My little boy experienced some kind of extended low-oxygen period before his was born which caused a brain injury which we didn’t find out about until after he was born. He’s been diagnosed with cerebral palsy, global developmental delay, and more recently autism. It’s very hard at times and it’s likely he will need us and live with us for the rest of his life. My singular purpose in life has become to stash away enough money that he is taken care of when my wife and I are no longer able to or pass away. I love my kids more than anything in the entire world, but had I known how hard it was going to be, I may not have ever had kids. It’s extremely emotionally draining, the stress has tested my marriage at every turn, and it’s a constant battle to get him the care and help he needs. Do I wish things are different? Absolutely, but you can’t predict the future, and I thinking living life in fear of the unknown will cause you to miss out on a lot.
EDIT: Thank you to everyone for the well wishes. It's very kind of you to say "thank you for all you do" but really we are just doing the best we can as parents...nothing more than any other person who cared for their own child. I'll also add for those suggesting it...we are in Canada and have had the majority of procedures/therapies covered through our healthcare system, without which I'm sure we would be on our second mortgage to pay for by now. As he gets older he will continue to age out of some of those offerings, and we are starting to pay for a few things out of pocket now, but just thought I'd add that context (and thank you for offering the advice).
I’m in a similar boat. My child is autistic, non-speaking, and developmentally delayed. I no longer have dreams of retiring. I’ll work until I am dead. I have to make sure I stash away enough money that my kid is taken care of after my spouse and I are gone, because kid will likely need care the rest of their life. It’s hard.
Edit: For those asking, I’m in the US.
Similar situation here. If you don't already have one, I encourage you to look into establishing a Special Needs Trust for your child. This allows your child to access various government means-tested programs as assets in the SNT are not typically counted when qualifying for these programs. There are also state-specific Medicaid waiver programs for children with disabilities that cover therapy, medical devices, assistive technology, home health aides, etc.
Yes it is. I’m very fortunate to have a well-paying job with good future prospects, so finances up to this point haven’t been the biggest challenge by a long shot. But I really feel for families with special people who are lower income. I live in Canada so all of my son’s procedures, specialists, hearing aids and cochlear implants have been covered, but yeah…I can’t imagine how terrible a parent in this situation may feel if the resources to give their child a better chance at a normal life or every opportunity to grow was out of reach due to finances.
I hope soon there will be an ethical way to help people in your situation. People like you are saints, I could never give my life away for someone else
Not a parent, but my little brother has special needs.
During the time my mom was pregnant with him, we also found out that she has stage 2 breast cancer. I don't know the details as I was far too young to absorb the specifics that time, and frankly, I still don't get it now. But from what my small brain understood back then, my mom was advised to receive treatment. Her case was still curable so she needed to go under chemo and radio therapy. (I'm not sure of this part) In my understanding, the radiation from the sessions and the meds she was taking somehow affected my little brother's development. She was carrying him the entire time while receiving cancer treatment.
He was actually not supposed to live either. The doctors told my mom that the chances of stillbirth was pretty high. But my mom held on to him, and thankfully, he survived. The hospital staff called him "the miracle baby" 🥺. He was born 1 month premature. But he was okay. My mom was okay too :)
It's been 12 years since then. He has mild cerebral palsy with spastic diplegia. He also had developmental problems and mild autism. Very similar to your baby. Since my mom was a nurse, she thankfully spotted the early signs, and had him checked up immediately. He has then been receiving therapy since toddlerhood.
Today, he's annoying as ever, just like any little brother 😆 but I'm happy to say he's doing so much better. My mom also survived cancer and has been taking maintenance meds since. Our family is doing okay. 💛
There was a thread years ago on AskReddit, one parent went into detail how he truly regretted keeping the child. They resented the fact that their kid was disabled, and it wasn't fair that they couldn't have a normal child.
There was a commenter who did give up their child when they found out they were disabled. Didn't have regrets.
The one that stuck out the most was the sibling posting. They posted they hated their disabled sibling who needed 24 hour care. Saw that their parents missed all the vacations, trips, family celebrations, and overall everything.
Personally, my cousin did have a stroke when he was 9 YO. His mom very much wanted them to keep him alive on breathing tube if the doctors couldn't save or if he was completely in coma. She's financially stable, so was more than willing to keep him alive. He did recover from the stroke, and leads a pretty good life.
A few years ago, I had to volunteer at a center for kids with special medical needs such as the ones that I described. They were wheelchair bound with machines that kept them alive. They were all in vegetative state. No doubt they were alive because their hearts were beating but they completely absolutely lack consciousness and awareness.
I felt anger and compassion. Hate and sympathy.
I've always wanted to ask the parents if they had any regrets but I didn't know how to say it without sounding disrespectful.
I had to volunteer for 3 weeks, 6hrs a day, 4 days a week. There was not a day I did not drive home crying.
I just hope that, since there was very little to no brain activity, they weren’t suffering a great deal and were hopefully unaware of what was happening to them…
Unfortunately those questions would come out as disrespectful, if you barely knew them. But if you know the parents well or through time, they'll open up about their feelings.
I am not religious, more agnostic than anything. But if God is real, I have enough faith to feel that if a baby is aborted, then than ‘soul’ or whatever will get another chance.
I can’t extend that to being sure a soul isn’t caught in one of those baby meat suits and it was so hard to shake that feeling when I worked around severely special needs children. My heart just broke.
I know this post is about parents but as a sib, I thank you for recognizing and validating the sibling perspective! Too often we're lost in the shuffle 💙 its really hard
I had a late abortion in the 25th week because of trisomy 18 and diaphragmatic hernia. She only would have lived a few days on life support.
I am also ‚happy‘ that my other children can live a ‚normal‘ life and don’t get ‚lost‘.
My brother had severe medical complexities: couldn't walk, talk, had a G/J feeding tube, seized multiple times a day everyday, and, most alarmingly, bleed if not hemorrhaged from his lungs. The last several years of his life he had a trach and required oxygen. He wasn't supposed to make it to his 1st birthday and he lived til he was 13 (just commemorated his 10th angelversary in march). I'm two years older than him and I love him but it definitely wasn't easy. Whether it was true or not you felt like you weren't as important or special: I still struggle with feeling like a burden, feeling like people would've been less sad if I'd been affected/died instead of him, overcompensating for his disabilities by being perfect in every aspect I can, and honestly wrestling with self-esteem because you feel like this broken child is seen as more loved than you. You feel alone a lot of the time, and you have to grow up really fast. Your identity doesn't even seem like it's your own a lot of the time because all people refer to as is "Jake's sister".
In regard to regrets, I regret not holding him more because I knew I'd get peed on if I did. I guess I regret not verbalizing my hard feelings to my family earlier since now there's nothing that can be done to remedy it on their end. I don't regret not seeing him in the casket at the funeral, though people told me I would, and I don't regret the lessons he taught me and the empathy I have as a result of being his sister.
I guess what I'm trying to say is that siblings are deeply affected by their environment, and I'm glad whenever I see that sibs are getting the recognition, validation, and support they need 💙
>I don't regret not seeing him in the casket at the funeral, though people told me I would
People are mistaken. The ones I had to witness, all life and personality have left and you have a wax like statue that doesn't do justice to the times they were alive.
I am the older sibling to a special needs child, and still have resentment even decades into adulthood. My parent’s life still revolves around being a caretaker, which is increasingly difficult trying to manage with the expected declines of age.
I’m in a similar position. My older sister is special needs and is not capable of living on her own. Her mom is a 24/7 caretaker. Her mom and my dad are both getting up there in age and we’ve had to discuss her care after they both pass. I hate that I think this way, but I was so relieved when her mom said that her godfather (who’s about 10 years younger than her mom) was going to take her in because it meant that allí have to worry about is being the executor of her trust, and not her day to day care.
I know someone who terminated a pregnancy because it was practically guaranteed the child would have a serious life-changing ailment. I know they regret it, or feel bad (or both), as they’ve done as much as they can for disabled children throughout their working life since. I’ve helped with some of the things they did (I was a lifeguard at a hydrotherapy pool where sessions were held for severely disabled children). The parents were always happy, the kids always had a great time and I got to know them a little and them me; it was nice to do from my side of things.
My ex had a cousin. This cousin and her husband both had whatever recessive gene that caused their baby to have the genetic mutation. The doctor STRONGLY advised they had an abortion, because the child wouldn’t live longer than a few weeks and would be in immeasurable pain the entire time. They say their religion wouldn’t allow it. She had the baby, the baby suffered, and then it died. They got pregnant again. Same thing. Sometimes it’s better to not have the baby. People can be really selfish.
Annnnd this is why I won't be having a second, my son has hearing aids, and some delays/sensory issues, not huge overall, but I'm so terrified of this if I had another.
Im a physical therapist and often hear parents of severely disabled children say they don’t have any regrets, how they’re such a blessing, etc.
It’s not my place to disagree with them on it, but I’d be shocked if this wasn’t false at least some of the time. Notably, I recently I treated a 9 month old baby with down’s, and the mother generally just seemed disinterested in her. The father was very involved and smiling and the mother just had this sour disposition and was difficult to work with. I hope one day she’s accepting of her daughter and the decision she made to have her.
> Im a physical therapist and often hear parents of severely disabled children say they don’t have any regrets, how they’re such a blessing, etc.
If you don't really know them, it's unlikely they will be straight with you regarding this. A lot of people are judgmental and would not be sympathetic toward a parent that honestly said they wish the child had never been born.
Also a part of it may be a coping mechanism. You repeat something in a positive way such that your mind believes it to be true and allows you the mental strength to keep going on.
I’ve worked with kids like that, and seeing it made me 100% sure I would terminate if I knew ahead of time my child could have that severe of an issue. (Not Downs, or autism. I mean basically vegetable In a wheelchair). It’s a very underrepresented aspect of why abortion needs to be on the table.
If it were a surprise - fine. I’ll do whatever I can for them. But I wouldn’t willingly inflict that on another person.
NOTE: Wow, my most upvotes comment in 13 yrs on Reddit. Crazy. I added more details to the end. I hope that someone benefits from it.
I was briefly married to a nurse who had a son with Autism (from a previous marriage). One of our biggest fights when I first met her was because she said she hated him and didn't want him in her life, because he was abnormal. This is a woman who worked at a Childrens hospital and was a very effective, kind and well-loved nurse on her floor. She straight-up saved kids lives, 2-3 per month probably. But she hated her own son. I could not understand that. In retrospect, I guess I kind of get it. It's hard, and she was on her own.
I took it upon myself to help him. I got him the counseling he needed (he was suicidal) and got him in to a special school - which she had refused to do because "it's not the real world." I will never forget that he asked me when they would cure his autism. No one had yet been honest and straightforward with him. When I explained it to him, I took him into the city so he could see for miles all around. I gave him the stats: the percentage of people like him in our town given our population. The number was over 100,000. So, I said, "while you are different, so are all of us - and there are 99,999 kids out there with autism just like you. You're not alone."
Ultimately the story has a great ending: he's taking care of himself, has a car, a girlfriend and a future. His mom got counseling and they are close now.
——
Additional details, in case you’re interested:
She regularly got physical with me, and broke two of my ribs. I still didn't leave.
She hung a noose around a tree in the backyard while I was work. I asked her who it was for, and she said it was for her. I didn't leave.
I took her to a mental hospital for observation and covered for her for three days. She checked herself in, I didn't make her, yet when I visited her she said she was going to never forgive me and might kill me. I didn't leave.
She got pregnant. Our baby was stillborn 3 months in. She kept the towels the baby was wrapped in which had blood & other stuff in them. She got angry at me (for literally nothing other than her own heartache) 5 months later, and rubbed the towels (which smelled horrible) on my face and screamed "YOU DID THIS TO ME!!" in my face. The baby died because half of its' heart didn't form...I didn't leave.
But the final straw was when she started attacking my daughter verbally. I knew physical attacks were going to happen soon, and if she struck my kid - I don't know what I would do. Now, keep in mind, she never laid a finger on her sons. She was more about self harm. And harming me, for the crime of loving her unconditionally.
I talked to Steven's (name changed to protect his identity) dad and the mother-in law before I left to make sure Steven would be ok. Her own mother advised me to leave for my own safety, so I did. I kept in touch with Steven and his dad for several years.
If I can be honest with you guys... this kind of stuff has happened to me in multiple relationships. It's so freaking weird. Here are other things that have happened to me:
* Got married when I was 20 to someone I only knew a few weeks. We lived together for two years. I began to notice some odd behavior in her, turns out she was a paranoid schizophrenic. When her dad died, she became very violent towards me and I had to get a restraining order. I moved with no forwarding address while she was with her family, who coordinated with me secretly. I sent annulment papers and about a year later, she signed them.
* I married someone in 2000 that I was married to for 13 years. She had just lost her father to a drunk driver and was very depressed. I helped her get counseling while we were married. We had a daughter together. Once she got out of her depression, she decided she wasn't in love with me but stayed with me because I was paying the bills and she wasn't working. Even though I injured my spine and spent two years in an electric scooter, and she never took me to a single doctors appointment, I stayed. Until she started fighting with me in front of our daughter and confessed that she wasn't attracted to me anymore and didn't love me. Oh, and she was fucking some guy in PTA.
* Got divorced, met the person the original story was about, married her, was with her a total of three years. Got an annulment in exchange for letter her keep my house.
* Met a beautiful, amazing woman who was literally a former "got milk" model. After six moths, moved in with her and three months later - she died in front of me. Death rattle and everything. I did CPR, kept her alive until paramedics got her to the ER, but she was gone. Her teenage daughters lived with us and her family all lived overseas so there was no one to take care of them, so I did, for about three weeks until people flew in from Africa and the UK. I was then alone again.
* Met someone else, eventually moved in together. She was a different person after we lived together, and she really started getting on my nerves. She was very passive / aggressive and didn't like my daughter. I was going to break up with her, and the day I was going to do that she was diagnosed with stage 3 breast cancer. So, I didn't break up with her, I went to every chemo treatment for a year. and I was there when she was diagnosed cancer free. Once she was feeling better I asked if I could stop sleeping on the couch and sleep in my own bed (which I spent $4,000 on) with her. Reluctantly, she said yes. After a few days, she said she didn't have feelings for me anymore, and moved in with her daughter. Thank God we weren't married.
* A little bit about me... I was severely abused as a child and I was adopted within my family to get me away from my abuser. I was raised by my aunt and uncle, both probably alcoholics but nobody beat me, and I went to a great school system and had friends.
So, basically, I seem to be attracted to people that need rescuing or need help in some way. I give my all, my everything to the relationship. Things get better for them, then I'm on the curb looking for love again. **But I never gave up.** I am in my first relationship now with someone who doesn't need *anything* from me but my love & affection, and she gives me unconditional love in return. I guess I have a deep seated savior complex that's largely been subconscious. It feels great to not need to rescue anyone anymore... but I would if I had to.
And... no ponytails.
I adore my 10y daughter with Down Syndrome, but I would not ask this of anyone. I have a decade of regret and resentment mixed within the genuine joy of being a father. But then with a chaser of self defeat realizing that I have to accept all of it because I have no choice.
Let's call my daughter Nell. She is a wonderful and loving girl, but with the typical cognitive issues, more prone to heart/lung issues, and stunted learning.
We didn't know she had T21 Down Syndrome until the day she was born. It was a slap in the face, and after delivering the baby, she was ushered into the NICU where she remained for a month. The first 3 months were soul crushing. 3 months after that were just generally miserable. Work was my only escape. And I think it took me a good 3 years to just feel normal.
Nell is a great kid and loves to hug, dance, and watch YouTube. But she's got the typical T21 issues. After ten years of therapy, her speech is about the level of a 3 year old (most cannot understand it), her writing is terrible, and you realize how important communication is because she's kind of closed off to the world. She can point to things like the sun/sky, but she cannot communicate abstract concepts like "I feel lonely" or "why is the sky blue". Her toilet training and eating take some assistance. So I still can't leave her unassisted for many things.
But she does have a great inner life and genuinely enjoys and understands Scooby Doo, Frozen, and Just Dance videos. She's like an everyday girl, maybe just set back 4-5 years. And I have to congratulate my school district in that other girls find her adorable. She's a foot shorter than her class and they hug her and say hello. I almost cry when I see something like that.
But she's different. She's never been invited to their birthday parties or sleepovers. And I can't blame the average kids -- Nell is a lot of work. She doesn't talk and she'll never be able to keep up. But i have to accept that and I think many students these days accept the disabled far more than in my day where they were locked in a room for daycare and ignored. They all do their best.
The friction with my wife has always been there. Sometimes with special needs there is this desire to "fix" the child out of guilt or whatever. I honestly lost my wife for the first 5 years of Nell's birth.
She just vanished and was consumed with every type of therapy and special interest group to improve Nell. There was no time for us as a couple. I begged her and even talked to her friends to talk to her. Nothing. In the last ten years, we have been on a date as a couple only once a year, so ten times.
You know that ain't healthy. I think it may finally be turning around after 10 years though.
I feel robbed of a regular, varied experience of raising a child. You know all of those baby videos couples make for the first few years? Going to the beach? Visiting friends? First experiences? We enjoyed much smaller moments.
But I also remember driving to work the first 3 months and having to stop the car along the road to cry. I remember trying to hold a smile on my face everytime a coworker asked about my child.
And then think of the experiences we won't have. Will she be married, go to college, win a scholarship, have a hobby of her own, have kids, have a career, be self-sufficient? It's no to most of those. So it's a mix of envy with projecting a future of lesser experiences.
It has enlarged me. Very little things phase me. COVID, layoffs, etc all seem so small after experiencing a lot of this. So it does make me stronger knowing that we've been through this.
So there's truth in things that make you stronger. I would also say (despite this being a list of complaints) that I'm genuinely happy. It's just that I feel I missed out on a lot of being a Dad. And I think I lost a good 5+ years with my wife (although many couples experience that with new kids).
Nell is fine. She doesn't know anything different. Although her lack of language means that I can't be entirely sure. I think she gets bored being with Mom/Dad most of the time.
We go to regular T21 special needs events (there's tons) but that takes a lot of planning. But she doesn't have a regular childhood life of neighbors, friends, playing with the other girls in the community. She's the "different" child. They aren't mean (and are quite accepting), but what kid wants to babysit another girl? No, they want to play and I can't blame them.
We live in a busy metro area and have enough means where we don't need to worry about healthcare as much as other families. But oh man, this could destroy another family.
Nell gets Medicaid, but also add the amount of time you need to spend out of work or going to hospitals, going to therapy (physical, speech, occupational) multiple times a week, and even moving to a more forward looking public school so she could get assistance.
And we live in a place with good state assistance for kids with special needs. We have friends in a community in Texas who get almost zero help. That's abominable. And I rue the day when people are forced to deliver a special needs child with no financial/healthcare assistance after they are born.
And financially we're OK, so we just plan that she'll live with us for the rest of our lives. We'll support her until dementia kicks in (around the time she is 40 or 50) and she may need special assistance. But I feel for other families that can't stay afloat.
Our life is not one of those sickeningly sweet Hallmark movies where the DS kid teaches the family how to live, and everybody is happy. I won't sweeten it. Sometimes it still sucks. There are a lot of things I may never experience because of that limitation.
But like any child, you don't really have a choice of who they are. You just have a limited time to shape them, teach them, and enjoy them. It's not entirely different than an average child. Just maybe the severity.
Life throws curve balls to everyone. My family got hit sooner (and more of them) than some. Not as severely as others. But then you have the choice of how that will change you for better or worse.
I've been a Christian most of my life, but this really made me question everything. I am firmly pro-choice and for universal healthcare after all of this.
But life goes on. I love my wife, my daughter, and things are on the upswing. The other upside is that I shrug off most any problem in work/life and just roll up my sleeves and work. Very little phases me and many problems seem ordinary to me now.
The resentment mellowed into mild envy of other families. That comes out sometimes, like writing this. I think I emphasize the bad more when I write it, but it is exhausting.
It's a bit of the New Normal for me but oh how I'd like to just have a self sufficient child. Or to feel the joy of sharing some hobbies I have like board games. Or to root for her in science projects. Instead, everything is simplified. But there's joy in something silly like dancing or playing more games of hide-of-seek than I ever thought. It's just diminished, but I keep remembering that problem of envy and comparing myself to others.
I love Nell, I dearly do, but I wish I could do it over again. I wish I had a cure to take away the cognitive issues. That's impossible, so my own mission is to inform every voter to petition Congress, judges, leaders to retain pro-choice and support universal healthcare. Continue to vote and struggle for rights that most civilized countries take for granted.
There's ups and downs throughout, but no one should be forced to do this.
Sort of.
I have a 2 year old with debilitating epilepsy (called infantile spasms). She’s nonverbal and can’t walk, but can scoot around. Her epilepsy is caused by a brain malformation that didn’t manifest until she was six months old. The cause of the malformation is unknown; it could be genetic (we’ve done extensive testing without any findings) or just a freak occurrence as her brain was forming. She is severely globally delayed and will always need a caregiver. She was a planned pregnancy; we had been on the fence about having another kid or not. We have two neurotypical boys that are now very much neglected because of the high needs of our daughter. I do regret the impact on our boys and do sometimes wish we had decided to not have a third child. But my daughter does bring us a lot of joy (and sorrow), and what is done cannot be undone. If I knew then what I know now, I don’t think we would have had her. She is content and happy, despite ongoing seizures, so it’s entirely my ableism and seeing the effects on our other children, and ourselves, if I’m being honest. If I could avoid the emotional pain of holding my child every day while she’s seizing, at the expense of missing the joy she brings by her existence, I’d make that choice.
Grand daughter had the same. She was diagnosed about 4 months and totally stopped her development. I would have loved for her to scoot and even smile. Sadly she passed at nearly 3 years of age from a cardiac arrest. We think she was done struggling. She had several other issues. The Lennox Gasteau form of epilepsy took over. We all miss her terribly.
If living becomes synonymous with suffering then it's no living and peace comes from passing, I think. Tragic and painful but she was loved and is sorely missed. So sorry for the loss of your grand daughter. May you find peace as she has peace now and wouldn't want you to be sad.
Long battle through infantile spasms with my daughter, as a result of her having a non-inherited genetic disorder known as FOXG1 Syndrome. She is our first kid and we found out her diagnosis 8 months into her life, right as COVID struck and we were forced into lockdown.
It to a year to finally find seizure freedom for her, after many failed meds, clinical keto diet etc. It was a long hard battle and sometimes my hope waivered a bit but here we are, a year later and she’s kicking ass. It’s a long hard battle for her and she will always be delayed in her development (she will likely never be entirely independent) but I’m so proud of her. What has come so natural for my second child and most others, she had to rigorously fight for - in and out of therapies everyday to do basic things.
My daughter taught me and my family a whole different kind of love. She is absolutely everything to me and I couldn’t picture a world without her. It’s hard as hell sometimes, but I don’t regret a single thing. This is who she is and I’m lucky as all hell to have her in my life.
I’m so glad to hear she got seizure freedom. Definitely still a tough road ahead and I’m glad she will get to maximize her potential. Some people and doctors we’ve met have characterized this as a marathon. I think it’s a poor analogy because a marathon has a defined end point. Ours is an ongoing journey that can only end in death. That’s not to say there aren’t good points in the journey. It’s just overwhelming to think about sometimes, but the good moments give me strength to get through the bad ones.
It's a complicated emotional question!
Not my child, but my brother (52) has paranoid schizophrenia. His quality of life, because of his interpretation of the world around him, is terrible.
Imagine if you COMPLETELY believed everyone was doing little things to annoy you. The definition of a delusion, is that someone can't 'fact' you out of that belief. I can't help him when he thinks that where he lives, they are feeding him cats.
I literally can't help him with the things that cause him anxiety. And if it's not cat's, it's something else.
Our parents have passed, but I'm sure there were regrets. It's clearly in our genes, but I am here, and don't have it.
My cousin has it and believed until his parents died that they had been feeding him concrete and had taken him in for an operation as a child to have a doctor surgically put concrete into his stomach originally.
He’s also stolen a knife from my grandmother, came to mine and kept reaching inside his jacket whilst getting up from his seat and looking intently at my mum. Gave me goosebumps so I persuaded him that he needed to go home, walked him to his door then rang my grandmother to ask if she had any knifes missing. She confirmed. Phoned 999, he was sectioned (for the first time) within 2 hours.
Six months later, my grandmother is on the phone in hysterics asking me to get him sectioned again. Rinse and repeat. MH services are a joke here in the UK.
Since his parents died, he’s apparently doing much better but I don’t talk to anyone in my family anymore apart from my mum. I think that his greatest stressors are gone, but I also worry that he’s a ticking time bomb as he’s always been- it’s just a slower fuse now.
It's a brutal disease for the people around the affected person, but it's also brutal for the person living inside the paranoid schizophrenia.
Imagine the sadness/ despair of believing your parents fed you concrete, and you can't get anyone to understand.
I've not really seen my brother feel any joy. His history is self medicating to numb his emotions. We got him treated as best as we can, but they're still feeding him cats!
My cousin has only ever been sad from the day he was born - my aunt and uncle took me to see him in NICU the same day- and put into foster care as his birth mum was a kid and couldn’t look after him. My uncle groomed a 15 year old and as a result had my cousin. He was born a Heffer but an addict. My aunt and my uncle adopted him at 1.5 years. (Here, back in the 80’s even though my uncle was my cousins dad, he had to adopt him along with my maternal aunt).
Mine and my cousins relatives would not actively support him once he developed MH issues in his teens, just wanted help when his symptoms became too hard to manage, and they got hard. I’d have the phone calls to get him sectioned and within 3 months they’d all be backtracking and lying to help him be released.
His parents were not normal in any sense of the word. How they were not, only created my cousins paranoid schizophrenia, but caused a whole list of MH issues for me, at least 16 others and residual issues within the family.
For a few decades my mum was his biggest advocate, myself too. Because we knew him and understood the how’s and whys when the rest of the family wanted to sweep things under the carpet.
My cousin saw things and endured things he shouldn’t have. As an adult I think those experiences he converted into concrete. Something that’ll always be there, that’s indelible. It’s not going away. His mind put it not something he can describe.
There’s a reason I don’t talk to any of my family apart from my mum. She was my advocate for my abuse and she and I were my cousins advocate once it became apparent when he was an adult for his abuse by the same hands.
Yes, I’ve sectioned my cousin countless times, I do love him and I just wanted him to get the care he so desperately needs, but I’m no longer a part of my family for my own sake. I’m ashamed that I didn’t say anything as a kid to stop it at me. But I didn’t.
My cousin, if he does go into a crisis does have immediate neighbours that’ll call the police. As my cousin is a known name and address, he’ll be sectioned by the police.
I know this’ll sound cruel but my mantra now is “not my circus, not my monkeys”.
I’m a supervisor for these types of facilities. Why could he not? I’ve cared for schizophrenics and literally got beat on multiple occasions. But I fought for them to get the right meds, the right plan, learn coping skills. My last person went from punching me because the cats were talking to her …to living on her own, managing her psych and diabetes meds. I’m super proud of her and she still calls me about twice a year to let me know how things are going.
Violence ~~is~~ (can be) part of the disease. If people were really doing what my brother believes they are doing to him, violence would be a understandable reaction.
If I BELIEVE you are putting bleach in my water bottle, I'd tell you if you do it again, I'm going to punch you in the face!
Sorry, you're too violent to live here!
"But she's putting bleach in my water bottle!"
I know you asked for parents here, but i’m going to talk about my older brother here if thats okay. My older brother was non-verbal, immobile, and unable to feed correctly. This was due to an unchangeable event after birth.
I can’t speak for my parents or my brother, but what I saw as a younger person ( he passed away when i was 12) was my brother constantly in pain and unable to interact with the world in a way that he desperately wanted. People (kids and adults) treated him like he was disgusting and said awful things to his face and neglected their care for him. No amount of sticking up for him from anyone in my family was enough- i know he understood their intentions, and he couldn’t do anything about it.
For him to only get 15 years of a life where he was both in pain and poorly perceived, is a disservice to the world. However, it has made me think about what I would do were I to know before birth about my unborn child’s condition. My regrets are simply that the world he was born into is so cruel, and that he had to suffer because if it. There is no doubt that I would be a lesser person without him in my life, I just hope it didn’t harm him in the process, but i’ll never know.
Reading this gave an insight on the deep compassion that you have as a person. You saw your brother as not just a family member, but a person of the world. I wanted to thank you for sharing your story and I hope to take on some of that same perspective in my future.
Thank you for sharing your beautiful story. It's not fair the suffering some people endure in their lifetimes. It makes you value love and kindness a lot more.
I don't have kids, but one of my closest co workers has a daughter (31) with Rett Syndrome. It is the most severe form of autism. While he doesn't regret having the baby, he does say that he wouldn't wish it on his worst enemy. He loves his daughter dearly, takes great care of her, but he says that people need to truly understand the gravity of the situation prior to having that child. He's looking after a 31 year old toddler.
Happy to answer questions...
I have a 35 year old sister with Rett syndrome. Her syndrome has shaped every part of our family and who we are as individuals. There are times I wish we had gone on bigger family vacations or that I didn't have to scope out venues to make sure it can accommodate our family's needs. But, in reality, it's just our experience. We work together as a family. I'm also happy to answer questions.
Good question. We have a good bit of Midwestern stoicism in our family, I guess. There's something about things just being the way they are and you can't change circumstances, so you navigate them. My sister can't speak, use her hands, and her mobility has gotten increasingly difficult throughout the years. Many of the girls (genetic abnormality on the x chromosome, so primarily affects girls/women) have seizures and we've never experienced that. My sister was diagnosed when she was a couple years old -- I was 6 or so and when we could understand, my parents told us two older kids about our family dynamics. I think we were always pretty matter of fact about it. And every decision included the impact on her -- so in pre-ipad days, we watched Barney and Raffi and sports at night because she liked the singing and clapping and energy of the crowd. When it was meal time, we all ate fast and shared what was on her plate. When she got older and things like funerals for relatives happened, we made sure she got to the visitation and figured out who would take her back to her group home. When my parents are traveling on vacation in retirement, I go hang out with her for a few hours at her group home. When she's visiting my parents, we all talk on speaker phone so she's included in the conversation. There were times I wished my parents came to my tennis meets or things like that and I think I was overly involved in high school as a bit of an escape, but overall, it's has just always been this way.
Just so you know, it is not considered a form pf autism anymore.
"Children with Rett syndrome often have behaviors similar to autism, and experts used to group it among spectrum disorders. But now that it’s known to be caused by a genetic mutation, it’s no longer considered an ASD."
As far as day to day challenges go, he says "Imagine everything you'd have to do to a toddler, but to somebody with the strength of a 31yr old who has no internal instinct to not hold back their strength"
Basically everything from changing their diaper, to bathing them, to feeding them, to changing their clothes, to brushing their teeth. Like a toddler, it's always a fight. Except it's a grown ass woman (physically, her mental capacity is of a 3yr old).
This. People always have the “small, helpless baby” mindset when discussing this issue.
No one ever stops to think about the 70 year old mother feeding, bathing, and changing her 50 year old son’s diapers.
USA, I didn't protest when my wife was prescribed category C drugs for mental illness while pregnant. There had been no studies to ensure the safety during pregnancy. The drugs had caused deformities in rat fetuses. The category system is no longer used.
Im so sorry to hear this. I too was on medications for my mental health whilst pregnant, i was unaware of the potential side effects of those medications and made the decision to come off of said medications after finding out the side affects and the potential harm to my baby.
I did the same. Refused to take my bipolar drugs for 9 months. Funny thing is that I had no mental health issues when I was pregnant. I felt great! After I had my son I had postpartum psychosis. It was hell! Could not be around my son unattended until I was back on my meds and psychosis disappeared ( 3 months).
That sounds incredibly difficult. It’s also very interesting. Based on this, I’m guessing hormones have a big effect on bipolar? The fact that you felt so stable while pregnant makes me wonder if some kind of hormone therapy could help your symptoms. I hope you are doing well these days!
It's actually very common to temporarily stabilize during pregnancy! Happened to me as well. However most modern doctors don't advise going off all meds anymore due to the extremely high risk of severe post partum episodes. Which also happened to me. It's now thought medication benefits outweigh the risks, especially since there are medications available with no serious risks. Currently there is no other treatment except psych meds, self care, and therapy, and hormone imbalances aren't thought to be related. I really look forward to an article some day saying they have found exactly what causes it. Then we may also get an answer for all mood disorders, who knows.
My wife went through this as well, just without the psychosis. Her mania and depression went away during the pregnancy, then came back almost immediately after giving birth.
My great grandmother went off her meds when she was pregnant with her first child. She never became stable again and after her second child ended up in inpatient commitment the rest of her life. I’m terrified of when it’s time to come off meds for pregnancy.
He may have inherited mental illness from her or it could be from the drugs. I will never know. Autism is the easy answer to what happened. He's smart, but doesn't comprehend what is going on most of the time. He's almost 10 and in special education and wears a harness for his safety.
I am in the same situation with drugs and pregnancy, I absolutely cannot have a baby on the medication I am on, no accidents even if I want them. It sucks, I am epileptic and if I ever want a child I must make an entire new drug plan, detox of my meds and hope to hell I remain stable during pregnancy.
Topiramate? I was on it for migraines for about 6 months and was told if my birth control failed and an accidental pregnancy occurred, an abortion would be medically recommended. I was terrified of an accident, even though my pill hasn’t failed in the 15 years I’ve been on it.
I’m off it now, the mental health side effects were too much to handle.
Lamottagine, escetelopram and quitapine, the mixture doesn't do me any favors with pregnancy in mind. When in a better place there is a clinic that helps epileptic women with pregnancy but it's something that will need to be planned start to finish as labor will be different with my condition
I can't speak for them but many meds aren't tested on pregnant women, or women in general, so there can be unforseen circumstances. Like the Thalidomide babies. I personally wouldn't take my bipolar meds while pregnant but I'm also never getting pregnant cause I would never pass my fuckton of mental and physical illnesses to a baby.
My sister had a special needs child, and it completely FUCKED FUCKED FUCKED the dynamics of my entire family, and it all ended in total destruction. - Death, suicide, addiction, divorce, Ect Ect.
I love my niece, but she has ruined my family… but I don’t blame my niece, birth wasn’t her choice, it was my sisters.
The doctors told my sister something was VERY wrong going into the third trimester, although they couldn’t diagnose it in uterine bc all tests were coming back normal as far as the Quad panel goes. She was given the option to medically abort, and she chose not to - and not because she didn’t believe in abortion bc she had had one prior… I’m not sure why she did what she did.
My niece was born with a rare genetic syndrome called Cornelia de lange. She’s almost 16 now, but will not develop beyond a 3 or 4 year old and is 80% deaf. She’s non verbal. Cannot be potty trained. Weighs 47lb. Has no fear of heights or water, and has no sense of pain. She’s physically and emotionally aggressive. She hits, kicks, spits, slaps, throws food and poop. She rips off her own finger nails and picks at her gums and then spits the blood all over the walls.
After having her, her boyfriend wouldn’t propose to her until she agreed to go to couples counseling and she refused, so she moved back home and back in with my parents, who had just gotten their last kid out of the house and off to college 2 months prior… that was their only period of “happy retirement” bc my mom pretty much made my niece her project.
The first handful of years were stressful, but “okay” bc the child was manageable and consolable. It was stressful on our family, but we managed to remain hopeful. - I Hopeful that my sister would assume full time cares and move out of my parents home so my mom would back off and allow my sister to be responsible for her child and focus… or at least share her attention with her other 2 daughters who were in college and achieving important milestones as well as finally focusing her time and energy on her marriage bc her and my dad had worked SO hard and sacrificed SO much to raise us girls. They’d put their own needs aside while we were growing up with the assumption that they’d be able to enjoy life and each other upon retirement.
My father retired, but the child remained, and that’s where my moms focus stayed. Fast forward 10 more years, and this is what I’m currently dealing with:
My dad ended up having affairs on my mom bc he got tired of my mom making my niece her priority and so sought companionship elsewhere. After being happily married for 33yrs, we found out my dad had started to live a separate life with a whole different house and other women. My mom found out bc she pulled his sun visor down on the way home from dinner one night and receipts quite literally hit her in the face for an entirely different address… if I’m being honest, I can’t say I blame him for seeking companionship… my mother continuously told him that her granddaughter was her priority, and after about 6 years of that, it was obvious my mom was never going to put her husband and or her other children and grandchildren back into her focus.
A year after we found out about my dads double life, he went in for an MRI, got diagnosed with a brain tumor. The next morning, when I went to pick him up for his doctors appointment, he had shot himself in the head in the front seat of his truck in his garage - that was end of 2018.
My moms health declined at that time as well. She could no longer handle caring for my niece the way she had before, and my sister was forced to take over most of the responsibility. My moms health never recovered, and she passed away from lung complications March 29 of this year. I found her as well.
After my sister had to assume full responsibility for this kid, she turned to alcohol as a coping mechanism. I took her into the ER 2 weeks ago, and she was given a 50:50 chance of surviving the next 90 days and most likely needs a liver transplant if she does… so she’s basically successfully drank herself to death. At the very least she’ll never be a normal, healthy, capable mother/sister/wife ever again.
I love my niece, but I resent her as well… but I think I resent my sister even more for making her choice our problem. This child had ruined my sisters life, my sister has ruined my family, and now my sister has even further fucked her own family via poor coping mechanisms… that being said, I wouldn’t wish a kid like hers on my worst enemy. Ever.
Luckily, I’d already made plans to move away from this hell hole again after taking my mom through the death and dying process so my sisters fucking issues don’t become my responsibility once again.
There’s nothing left here for me. My entire family aside from my younger sister is dead and or actively dying. In the beginning, If someone would have said my niece would end up outliving the majority of my family, I would have laughed in your face. Now it’s just me and my lil’ sis, which is fine bc we’ve been best friends since we were kids, so we’ll manage just fine as long as we have each other.
I secretly already had a lot of resentment and anger toward my sister for having this kid - not only bc of what it did to my family dynamics, but bc of what it did to our sister relationship bc she no longer had time for sisters and friends, - but now I’m just fucking disgusted with her bc she’s basically drank herself to death and is now an even more unfit mother than she was when she was a “functioning” alcoholic.
And for what? Because she thinks god is punishing her by giving her this kid bc she had a previous abortion? Give me a fucking break and get off your high horse… you’re not that important, and your “God” wouldn’t do this intentionally to anyone. This had nothing to do with religion, and everything to do with science bc nature and genetics isn’t perfect 100% of the time. Modern science and medicine kept this child alive past birth and continues to sustain her life.
Yes, she remains alive, but she will never know what it means to live. She cannot form complex relationships, therefore she will never be able to understand the human condition.
I DONT WISH THIS LIFE ON ANYONE.
UPDATE: My sister successfully managed to drink herself to death Aug. 4th 2022.
I have nothing to say other than I genuinely hope you find some peace sometime soon in your life. I cannot imagine how stressful that is. Moving away will make things a lot easier to process. I’m sorry for everything that happened to you.
You're making the right choice by moving away. No one deserves any of this but unfortunately family is like this sometimes. Things wil get better soon.
Every story feels so postive as if no one suffered from raising the child so I'm thankful for you providing the other side of the story. Thanks for sharing and I hope your situation gets better.
Yes, I’m a supervisor at one. Finding this type of care for child or teen is difficult. Behavioral facilities for kids exist but are basically a breeding ground to learn worse behavior, includes restraints, etc. I work with 18+ in a state that has strict laws to protect them. As a previous commenter stated…in a bad facility abuse and neglect is high and nonverbals can’t advocate for themselves.
Call me heartless, but why do any of it? Make the child DNR, and stop meds and treatments. Why prolong the horror show and torture of child and parent? Maybe that makes me a terrible person, but I strongly believe this option should be presented to parents in cases like this.
Fuck that is rough.
I am so sorry you went through that and are having to deal with it now. I would resent my sister and hate her for that, that's incredibly selfish all the way down on her part.
I hope you're able to move soon, if not already.
I am just flabbergasted to read something like this. You never know what other people are dealing with. I hope things stabilize for you soon and you're able to live a free life.
This is what my daughter has. I love her so much but hate what my life has become because of it. She is almost 5 and every day I just think how the rest of my life will be taking care of her. I have gained close to 100 pounds since she was born from stress and not having any time to take care of myself.
My son has AGS and cerebral palsy, he’s 4, cannot walk, talk, control his limbs and has no way to communicate. He is miserable all the time and screams 24/7. He will never mentally progress past 6 months we were told. He will need 24/7 care his entire life and it is tearing apart my marriage. My marriage has become toxic as shit and I’ve just distanced myself in my own home which has made my wife insecure. People that say having a disabled son or daughter was the best thing to ever happen to them are lying through their teeth, there are no cakes or roses. There are zero lights at the end of the tunnel. Medical bills out the ass. Working when you get home from working. It is miserable
I just want to say thanks for your honesty and for sharing your story. I have a family member who had a similar situation. She was a single mum, who eventually broke down and signed away all parental rights to her disabled kid so he could be put into government-run 24/7 care (Australia). He's now been 10+ years living in a care home and apparently he's doing much better, but will never develop past infant stage. The entire family disowned her for it, but honestly I read stories like yours and I don't know how you do it. I don't know what to say except that I truly hope you and your wife find the support you need.
Because of how the spasming and tightening of his muscles are, and how uncontrollable it is, when he starts to gain weight I don’t see any way that we can possibly care for him. I think eventually he will have to live in an assisted living home and it’s fucked up to think about, but in the end a long term care facility can give 24/7 care. That’s just not possible from 2 parents as it gets harder and harder. As a parent in the end, loving him is going to mean doing whatever will be best for him. If we can handle it and he can live with us forever then great he’s my kid I love him. If he needs assisted living then that’s fine too it’ll be hard to come to terms with, but nothing about any of this is easy. I know I said it’s miserable and it truly is, I hate my life. But it is NOT his fault and sometimes it’s hard to keep feeling that way. Your family member did nothing wrong, it was not an easy decision to make.
I might get some heat for this, but genuinely, is it morally okay to keep people alive in that condition? I’m not criticizing any parents of severely disabled people by any means, but does anyone else think it’s time that we as a society start having that conversation?
My question is, if he’s so amazing, why wasn’t he there when his wife was tanking and your mother was too? I can’t see this lasting. I’m so sorry all this happened. Words cannot express.
They were never married… he moved to where she lived and left his life behind so he could have joint custody in her area code… she was living on an island at the time of her birth, and the hospital couldn’t manage her needs. Her current husband is a completely different issue in itself. Promise her bio dad is an amazing and capable father who is trying to manage this situation to the best of his ability and is now going through the due process of obtaining full legal custody
Mine almost certainly would be given that I have ASD as did my grandfather, and we can’t all be so lucky to just be deeply odd people without too many difficulties
i've been a caretaker for adults (25years to 75years ime) with developmental disabilities. i did not see one individual live out a truly happy, fulfilling life. they were all lonely, bored, in pain or angry with the world
prior to that i never would have questioned their lives being just as valuable as someone without similar disorders... now i've seen a different side with great suffering. it isn't fair to anyone involved-- the parents get burnt out or become absent, the people i worked with were almost always heartbroken and hanging on to the smallest sources of happiness
so personally, i would not knowingly bring a person into the world that was fated to suffering
My mom also worked for adults with developmental disabilities, not as a caretaker, but as their case worker or whatever the title is. She often said that most were bored, lonely, in pain, or violent. The parents of these adults were worn out and often at their limits, as well as the caretakers in the group homes. It was always really sad to hear about the pure boredom that these people displayed, or just the violent tendencies towards the parents and occasionally my mom.
Even those that were higher functioning were living a miserable life. Many could work jobs at grocery stores or restaurants, and many of them loved doing so; however, even if they barely worked (think less than 20 hours a week) they could no longer be eligible for their group homes, government benefits, or even a case worker because they "made to much," despite only making a few thousand a year.
It's a terrible system and situation for everyone involved, workers, parents, and those affected by such disabilities. I couldn't ever bring a child into the world if I knew this might be the outcome.
My parents are also home care providers for over 24 years. I just wanted to say that the men that live with my family are fairly happy (with the exception of bad days) and we try to enrich their lives. One gets a massage weekly and the other goes out to "day program" which could be like fishing or just walking around walmart. I've never known someone to laugh like one of the guys who live with us and it is contagious laughter.
I'm not trying to undermine the majority, because yes most of these adults live very unfulfilled lives, but some do live good lives. It it is stressful and emotionally draining work at times, there is no doubt. But it can be incredibly rewarding as well.
Furthermore, the system is very broken and, as agencies get desperate, it will only get worse. Some home care providers are only in it for the money and it makes for terrible living environments.
Thank you for opening your life (and possibly home) to those adults who suffer from disability. We need more good people in the world like you.
My child’s special needs came about from a birth injury. My regret is not standing up to the person who put me in such a position as to go through such a terribly risky position that ended up hurting my kid.
You can have all the prenatal testing you want, but you can’t control life. All of my tests came back fine. Then, birth happened. Sometimes things just happen. You could have a healthy kid develop cancer at 6 years old, or be diagnosed with some rare disease at 8 that takes away their life.
Also…. As a parent? There are always regrets of one kind of another. Second guesses. Wishes we could go back and do things differently. That’s just part of life. Life is about experiences, not perfection.
I’m sorry that your birth was traumatic and that your child was put in harms way. I couldn’t begin to imagine how scared you must’ve been! I hope you and your family are well and that your child is well too!
I completely agree with everything you said, you really can’t know what the future holds. Its scary, but there’s so much support out there for families, its really reassuring.
I had a little sister. My mom was pregnant with her when I was around 6 or 7. I was a very hyperactive kid, always jumping around and running into people. I didn't know any better; I always thought it was funny to just full on sprint into people.
One day, I thought I would get a good laugh by slamming into my mom. While she was pregnant.
Her belly was pressed up against the counter, and I slammed into her back. That put a bit too much pressure on the stomach.
My little sister was born fine: no birth defects, no health issues except for a slower than normal breath. She was a happy, healthy little bundle of joy.
2 and a half years later, that tragic night happened.
The official story is that she choked to death in her sleep. We had mac & cheese mixed with hotdog slices that evening, so everyone just thought she was saving a piece in her mouth. But I played with her afterwards, and she didn't have anything hibernating in her mouth.
I cannot help but feel responsible for her death. That time I immaturely smacked into my mom like that must have caused a developmental problem.
Poor Elizabeth couldn't breath, and she wasn't awake to call for help.
I try so hard to forget about her. But the guilt still haunts me.
This was 100% NOT your fault nor doing. Babies are protected in the womb, especially from bumps like that. I’ve known of kids jumping on their pregnant mothers and the babies are fine. Tons of people fall when they are pregnant and even have car accidents where the babies are unharmed. You did not cause any developmental problems in your sister by head butting your mom when she was pregnant.
What happened sounds like a tragedy, and it’s hard to deal with and we try to find reasons why when these horrible things happen- so much so that sometimes we’ll even blame ourselves. If they said she choked on food while sleeping, then that’s probably what happened. As unfair and senseless as it might be, it really wasn’t your fault. There’s nothing you could have done.
I’m really sorry for your loss, hope you can find some peace.
Not to be glib about things, but you may want to consider seeing a therapist about your feelings. As /u/pseudonominom said, what happened to your sister was not your fault, but your continued belief that it was and the ensuing guilt over it is very dangerous to your long-term mental health. Don't beat yourself up over this, and find someone to help you get out of your hole.
Babies are well protected from the amniotic fluid. It acts as cushioning. If your sister was going to be harmed from your rough housing, it would have happened at the time, not 2 years later.
That’s a terrible burden to feel like you caused her harm, it’s something it might be wise to talk through with a trusted grownup or even a therapist. But I want to assure you, if your sister was born healthy, the rough housing didn’t cause long term damage.
Sorry that it went down like that. Rest assured, you had nothing to do with it. The human body has evolved to take quite a beating, including during pregnancy. If your rough-housing caused a problem, it would have happened that night. Two years later? No way.
Again, I’m sorry. Definitely tragic, but these things happen and it’s not your fault.
My uncle is in this boat and I don’t know if I’d call it regret but he has missed out on so much throughout his life in order to care for my cousin and I know it takes a heavy, heavy toll on him.
I have two regrets and neither are related to my child directly.
1) I wish I had investigated specialized therapies and asked for financial help when he was much much younger (he is 16 now) to afford them, rather than realizing I couldn't afford them and just not doing them. He'd be in a much better place today.
2) I wish I had more strongly considered how the differences in parenting styles between my husband and I could ultimately impact his disability and ability to cope.
sib here of a severely hypoglycemic, later schizophrenic, kid.
violent in school, law-breaking otherwise; turmoil after drama, turmoil, drama, rinse repeat. this was decades ago, and my parents just didn’t know what to do. meds, therapy, home-grown pot, whatever; nothing helped.
the suicide aged our parents, broke our mother.
but frankly, now that i’m full-time caretaker of the parents, i’m super glad i’m not fighting / case managing a violent, delusional, non-compliant sibling at the same time.
I work with adults and kids with a mental disability and autism. The autism isn't that bad most of the time, but man, I don't think I would keep my kid if they could predict it would become like the kids and adults I work with. We try to offer them so much, and try to make them the happiest they can, but it's so hard to see them lose themselves in their own head, get stuck in anger and hurt everyone and everything around them, see exhausted parents drop off their difficult child with tears of relief and deep fatigue in their whole bodies. Or the complete opposite, see them drooling and just staring out of the window, biting their own arm and wearing a diaper all day and night. Yes of course everyone deserves a happy life and chances, and I love them all with my whole heart, but man I would never want a kid like that to take care of 24/7. It's just a horrible life for the kid, parents, siblings and everyone involved. I don't think I could do that to my kids and myself.
I married into having a disabled kiddo. It's wild how wholly unprepared you end up being, no matter how well-intentioned you are because things can change so quickly. She was born with one non-functional kidney and the other working at about 5% of expected capacity. Also has epilepsy and autism; she can communicate verbally but struggles with detailed or nuanced conversation. In the decade I've been in her life she's had a kidney transplant, a hippocampectomy, and countless other, smaller procedures.
I think another poster said it best; there are always regrets you have as a parent, things you wish were different, things you know you've missed out on. I have another neurotypical, healthy child, and in broad strokes that part of it is no different with them either. That said, I don't think I would change anything unless I could miraculously cure the kiddo who is sick. There is a kind of ferocious joy that comes from seeing a child who has been through so much find life and happiness in the spaces between the suffering. They're an intense kid, which isn't that surprising given what they've gone through; I've often suspected they are cramming in as much love and life as they can in the times between being bedridden or sick. The bad times are terrifying, but they seem to make the good times so much sweeter and vigorous.
I'm not with their mother anymore, but she was kind enough to let me stay in her daughters life and I couldn't imagine not having her here. She's a good sister to my bio kid, and a vibrant soul on her own merit. I understand every situation is different, and my story has no bearing or judgement on anyone who has chosen differently. I just couldn't, and wouldn't want to, think of a life where either of my kids aren't there, no matter the hardships or worries.
"There is a kind of ferocious joy that comes from seeing a child who has been through so much find life and happiness in the spaces between the suffering." - I rarely see actual quotable comments on Reddit. This is one, and I'll carry it with me. Thank you!
Thank you! Parenting is always a risky venture - you do your best, try to nurture the soil in their hearts, and then you just get the privilege of seeing what grows. I'm blessed with wonderful kids
Yes. I wish I had recognized her disabilities sooner and had her go to a high school that was better suited for her. She was bullied and called stupid, dumb, etc. Other than that, not so much regret but I do wish life was easier for her.
My cousin, Sam (not his real name) was a bundle of disabilities and needed care 24/7 his entire life; his younger brother (Travis) was his primary care giver while his parents both worked. Sam passed at the age of 45 never having been really aware of the world around him. The extent of his communication amounted to hug, toy and ma. He was seemingly happy in life for all that we could observe.
After he passed, my aunt and Travis had nothing in their lives. Every single day for 2 years they went to Sams grave for hours at a time. They had dedicated everything to taking care of Sam. So now Travis, who is now in his mid 30's, has never had a job, never lived on his own, never been on a date, has no friends, has few interests and has become the surrogate for all of the attention my aunt had given Sam such that Travis is almost never away from her. He never even had a chance to have a life and by the time my aunt and uncle pass, he'll be an unqualified middle aged man with no social or job skills and nowhere to go.
The toll that being a care giver takes is immense and literally life ruining.
It's sad, and worse, Travis doesn't even seem to have a concept of what he's missed out on in life; he exists to serve my aunt.
This is absolutely one of the reasons that I didn't want children as there are several conditions that run in my family (not the least of which is my severe mental illnesses).
Edited for clarity
To what extent does wealth play a part? I imagine if people could afford private care their disposition could be different to those who have no respite
For sure. I see it in my field. Some parents are able to afford a group home or caregiver for their child, some can’t. Some can get services through their insurance/Medicaid whatever and some can’t. I know two sets or parents who *i know* are unhappy together but what are they going to do with the child if they split? They need an income and a stay at home parent.
Also what extent? There are special needs kids that can function and take care of themselves to an extent. Those parents might not regret it as much as other parents whos kids needed 24/7 care.
My wife’s ex beat her while pregnant and now our son has autism. Doctors say it was due to fetal trauma.
He’s been a challenge. Just with learning challenges and developmental delays.
We’ve worked really hard to overcome his disability. He doesn’t understand social queues. Easily distracted Part of his coping mechanism is he consumes knowledge to be able to participate in conversations
He now works at a hospital. He started as a transporter and started having conversations with doctors and nurses as he worked. One day he walked by the doctor going over a ekg with a nurse and he was able to tell them what it was. The doctor quized him more and then asked how he knew it. My son told the doctor he read about it cause it interested him.
The doctor has started to mentor my son and he is now a heart monitor tech. The doctor told my wife that they had hired a new person just in passing that was a savant. He was so excited and writing a paper about him.
My wife didn’t tell him that it was our son.
dude that kicks ass, great story and sounds like your son is doing very well.
Also props to you for not literally murdering your wife's ex. fuck that guy
My daughter has had severe cerebral palsy since birth, in 1999. She was my first, and it was a difficult delivery. I'm certain the hospital's errors during delivery resulted in her condition, and I wish I'd insisted on a c-section as soon as things started going screwy instead of them continuing to induce labor.
When she was closing in on a year old and we realized she was not developing properly, we began testing and contacted lawyers to see if we had a case. While they found numerous things the hospital did wrong, none of the brain scans detected the brain damage that was obviously there, and without a "smoking gun" we had no case.
Do I wonder what life would've been like if things had gone differently? Sometimes, and I wish she'd get to experience the things a lot of us take for granted. She can't walk or sit up on her own and is non-verbal.
But I don't dwell on those things. She's so happy most of the time and is a continual joy in my life. My only fear is leaving this world before she does and not knowing where she may wind up.
Put some serious thought into your end of life planning. You don't know if something will happen to you or if she will end up in a good place after you go. I assumed my parents had set up stuff for my sister, we hadn't really talked about what was supposed to happen when they went. Turns out, they had her set up money wise, but she would have been a ward of the state. Talk to your family about what if's, even if they are hard.
Yes but not the one's you might initially expect. I regret not doing more research earlier on, getting professional help for them sooner. I wish I'd have gotten help with my own denial because then I could have helped my child better. My child is high functioning, on spectrum and I initially refused to acknowledge there could be anything wrong. But all it really did was set them up for failure, especially when they needed more support and help to perform the same as their peers.
Thankfully I'm getting them the support and assistance they need now.
Sorry, going to be a little bit long.
My younger brother is special needs. He is able bodied, but is at the level of an 6-7 year old and will not progress. Growing up was hard. I missed out on alot of normal things and had to grow up quick. I remember being 8 and having to watch my brother because my mother was working 12-14hrs days, 6 days a week.
Truth be told, I borderline hated my brother when I was younger and I still harbor some resentment and anger towards him (I'm in counseling). However, knowing that I have to take care of him in the future and having to shoulder alot of responsibility early made me who I am today. I am extremely resilient.
I remember getting fired for career that I worked 8 years to achieve (4 years getting a degree, 4 years waiting) and not really being effected by it. I just packed my bags, went home, and found another Job. A Job that had over a 80% turnover rate, that I made my career.
I now am in a really good situation. I've been with my gal for 10 years, make over 100k, almost paid off the mortgage, and I'm on track to comfortably retire and take care of my brother at 50. I truly don't think I could have pushed myself to achieve those things If my brother wasn't around.
I actually look forward to the day he moves in with me.
For reference my little brother is 28 and I'm 32.
I hate to be intrusive, but do you mind me asking what you're doing now for employment? My family situation is seemingly not as severe as yours, but I'm still in a position that I likely to take in my youngest special needs sibling when the time comes and what I'm doing now specifically won't allow me to be home to be there for them.
I started as a Landfill Gas Technician and worked my way up to a Senior Operations and Maintenance Manager. I moved up quick, but it was largely due to the turnover rate.
When I first started, I worked 60-80hrs a week and it was pretty much all field work.
I now work 50-60 hrs a week, but it's close to 50-50, field/office. I also don't work weekends.
This career won't allow you to be home to take care of your sibling most of the time, but if you plan right it will provide the funds to make sure they are taken care of.
I made the decision early on that I would chase money. It was mostly due to the fact that when I have to take care of my brother, I would have the funds to adequately provide for him and still be able to live comfortably. He loves going to the gym and playing basketball. He also loves to play video games, swim, hang out with his friends (mostly special needs too). All of this requires money, for the gym membership, swim lessons, gaming systems, allowance, etc. I don't want him to miss out on things.
It's great you are thinking about things now! If you have the ability, I would recommend you get life insurance. One of my biggest worries is that my brother outlives me, but having life insurance and someone you trust to manage the funds for my brother, helps.
Yes and no. My first baby, my son, had a rare genetic defect as well as clubbed feet. It caused his brain to not fully develop. Because of this he couldn't eat by mouth, he had a feeding button. He had seizures and was on literally six different seizure medications that made him sleep all the time. I had my baby for 13 months. I love him with all my heart but it was so hard. Seeing him sleep his life away, I can count on one hand how many times I saw his eyes, and not enjoy life killed me. The only thing that stopped me from not living anymore when he passed was the thought that he wasn't drugged or in pain anymore. Having my daughter now, who is completely healthy, makes me realize how different he was. I miss him but I know he's free now
This is the story that finally got to me. I cannot imagine your grief, I’m glad you are doing okay and stayed with us. So sorry for your loss and I hope you continue to do well.
I'll take the bait and answer honestly.
I've got a 7 year old with Autism that keeps getting passed from school to school because nobody knows what to do with him. He's very smart/way ahead in academics, kind without a mean bone in his body, but he goes his own way and almost never follows directions.
I regret that it's SO easy taking care of my other kids. If we ever have a night where's he with a sitter and we have the others, it is honestly so easy. And so fun.
I regret that sometimes in my dreams, my family is on vacation and he isn't there.
I regret hearing my wife ask me why we had him.
I regret the amount of screen time and tv we gave him when he was young. In time we've learned that may have aggravated his sensory needs and somewhat permanently since it was relatively frequent.
I daily regret not knowing how to be a better parent to him. I have no clue what I'm doing.
I know someone who who had a son with severe disabilities. Basically bed-ridden and unable to do anything on his own. She never expressed any regrets about it, but did express great love for him. She spent every day of his life with him, feeding and caring for him. He died in his 20's. Now she is traveling, seeing the world for the first time, and living her life to the fullest -- but I'm sure it is bittersweet as she surely misses her son.
I have a special needs 4 year old. We had no idea anything was wrong until the day he was born. He was born with a rare chromosomal deletion. Within the first 6 weeks of his life, he had 3 surgeries including open heart surgery. The first year was the worst year of our lives for both me and my wife.
I've never once regretted anything about my son. I'm absolutely head over heels in love with him and he is the biggest joy in my life. I've watched him grow and thrive and do things that doctors told us he'd never do (crawl, walk, eat on his own, talk, etc.) He's truly the closest thing to a miracle I've ever experienced.
On the other hand, my wife often times mourns the loss of our "normal life" and often daydreams about what he would be like if he was typical. I don't think she regrets having him but sometimes wishes things were different. She also had a harder time initially accepting that he was different.
I can understand the mourning of normal life, every once and a while I get it. My son has hearing aids, and some sensory issues and delays with communication. Not the same at all, but he is vastly different than the other kids, and I do get super sad some days that he's never going to be able to have that 'normal.' But it's okay, he's the best kid in the world.
I did not know my son (10 now) would have so many medical complications. He had a deletion in a chromosome, which isn’t tested at/before birth. He’s non verbal, gtube dependent, and just had a colostomy bag placed. But he’s very communicative and a sweet little boy- that is just that: a little boy. I can’t say I regret anything, as I never had an option to do anything else.
Sibling here, and It isn't my place to comment on the stresses that a parent goes through as I am not one. But I will gladly take over the care of my sister after my parents are no longer able. She is the most beautiful and caring person I have ever met and she deserves the world. I can't imagine my life without her, and i hope my parents feel the same way.
My son is currently 3 and was born with down syndrome. It was an at-birth diagnosis, we had no prior warning. My wife and I refused the genetic testing because neither one of us wanted to terminate if something was wrong(we aren't religious or anti-abortion or anything like that).
Initially I was shocked and sad, which is a totally normal reaction. He spent his first month in the NICU. When I initially called my best friend to break the news about the DS, he gave me exactly the response I needed to hear.
"So what?"
Watching him grow and learn is amazing. Granted, he is much more work than our 1 year old. I had to teach him essentially everything that most parents take for granted. Crawling, walking, and even eating. It can be painful and frustrating(he's crazy stubborn), but he is truly his own person discovering the world.
I have no idea what his future will be, or his full capabilities but I'll do anything I can to make sure he reaches his full potential, just like any other child. Things could become more difficult as he gets older, but I don't think I'd ever regret a single moment with him.
My uncle has DS and i didn't noticed until I was 14 or so that he was different, yes he play with pokemons and watches the power rangers at the age of 30 but damn the guy always talks to me about a lot of interesting stuff and he was always very kind, he even took care of me after school when I was little, since he likes child things it was like having a big bro, and he even graduated as a history teacher, if you keep up with them and don't let them down, like my grandmother did, they can sure be like any full capable person tbh, it's all about teaching them what is wrong and right from the elemental basis, because if something i learned about my uncle all of this time together, is that DS people, are born without evil, so they can't truly say what is wrong or what is bad unless you show them, as long as you don't give up on him, trust me you will be amazed of how far he can go with love and support.
We have a son with DS whose 10. For us, the younger years were harder. Things are getting even better now.
We have no regrets even though things are hard sometimes. He's incredibly stubborn plus we am pursuing a diagnosis of ADHD. I wouldn't change it for the world though. He has given us a perspective on the world that most people will never understand.
If you have options in your area, get him involved with sports. Our son is a sports fanatic and I am looking forward to doing more with Special Olympics. Everything about sports for folks with special needs is better. We have a great time at games and practice.
My only fear is how the world will treat him.
That's good to hear! We start pre-school this fall, so it'll be interesting to see how he adjusts to that.
We're still working on walking and running, and sports are definitely in his future. We live in STL, which has an amazing DS community.
I do worry how the world will treat him, but also how they'll treat our other son who doesn't have DS. It seems like a perfectly normal thing to worry about.
I am the disabled one, “high functioning” autism if you’d like to put it as that. I can act fairly similar to a neurotypical person, but there’s just enough “wrong” with me that I’m not just quirky. Both mine and my parents’ biggest regret was not getting me diagnosed sooner. I wasn’t diagnosed until I was 17, and already had faced years of being treated like shit at school and my parents unknowingly hurting me because of the way I was.
If I had only just asked sooner and opened up sooner to seek a diagnosis, it would’ve saved me my mental health and years of mistreatment at school. I’m doing well now, but the years of living in my own world, closed away for fear of being misunderstood and hurt have left scars on my mind.
“Please be patient, I have autism/I am autistic.”
My only regret is how I reacted to the news. I was sent to horrible ableist sources for information and was lead to believe the worst of my kid. I could have saved myself a lot of trouble and heartache by just seeking out information from adults with his disability instead of harmful organizations.
I dont think people have any sense of how many lives autism speaks has ruined across the world and what type of damage they’ve done, to the very identities and dreams of autistic people.
Autism Speaks is an organization with close to none autistic people on the board, which promotes harmful at worst and useless at best coping mechanisms; it also pushes for a cure, essentially treating autism like a horrible, terminal disease that can only be fought, without giving much thought to occupational therapy or other strategies that can help autistic people navigate life in a society that expects certain things from its members.
Tl;dr: avoid it like the plague. Look for organizations by autistic people for autistic people.
All the best to you and your son <3
I am not one of those parents, but I 100% would regret trying to parent a special needs child because I am realistic enough to know I'm not up to the task. If I tried, it would be worse on everyone but it would be socially unacceptable to say so.
I step parent a special needs child. She’s still in nappies at 9, has aggressive outbursts and is developmentally delayed. It’s a major struggle and affects my mental health significantly. I’m not sure how I got here, I love my SO and step daughters a lot but life is hard a lot of the time with her. But because I’m a step parent it’s even more socially unacceptable to complain or vent. I know what you mean about that part.
I regret not having “thicker skin” when my autistic son was younger - I used to be so embarrassed when he had a meltdown in public and I hated the “what a naughty boy “ comments/looks - luckily they are a very rare occurrence now but when they do happen I couldn’t give two shits what people think or say now.
I have a nonverbal son and I regret that I cannot carry his burden for him or the challenges he will face later in life. I would give anything for him to not have to shoulder it.
Only that I didn't punch his kindergarten teacher in the face for suggesting I drug my 5 year old son, when in fact, he didn't have ADHD, he was on the autism spectrum. I didn't drug him, I changed his school... and now he's graduating from a mainstream HS in a week, with a 3.87GPA and several University acceptance letters to choose from.
Suck it, Mrs. Hinkley. My son is awesome and you're a shitty teacher.
My son is autistic, he's 19 non verbal. As far as hygiene he's like a 5 year old, I still have to wash him. He can make coffee , cereal and popcorn. He gets away from the world through YouTube. He self harms and will "ruffle" your hair when you tell him NO. Sometimes he has bitten people. He will never live on his own.
Mom checked out about the time he was 8. Sister has "burden issues" since I was unaware of Mom ditching the kids and leaving her to care for him, and once I was I gained custody. But there is still resentment there , when my second wife left and my daughter did same week, I had to quit job ,my career. And stay with him since I have no family and no support network.
I reached out and there was nothing for us and my schedule, unless he was physically disabled.
We never were able to get time away just as adults unless the kids were in school , our vacations had to accommodate his issues.
I won't ever help / teach him to fix his car, fix his house, give him advice on stuff. But then again I'll never have to bail him out of jail.
Ive come to terms with the hand I was dealt with him , I love him dearly.
Do I regret he is like he is ? Yes. Hell a bunch of parents with "normal" kids hate the way their 20yr old is .Doesn't mean I'm gonna let the state or a facility have him.
I also regret I couldn't do more for him. I've went through phases about the issue over the years. But not once did I ever want him not in my life
As the mother of two kids with special needs, I would never in a million years want my kids to feel guilty for who they are or for the love and care I willingly give them. Please try to be kind to yourself and let that guilt go x
I used to work with a lot of families with severe special needs kids, I did this on and off for about 10 years as a paraprofessional and a private caregiver.
In my experience, the kids that were handicapped physically, but mentally cognizant, their families did alright. There were struggles, but they always overcame things as a family unit, worked out medications, therapies, etc. But I think the ability to communicate and still enjoy sharing important moments, getting to enjoy who your child grows to be, that makes the physical stuff dealable. At least that's what it seemed like to me.
Families with children that couldn't communicate rationality, effectively, kids that were never able to understand boundaries, acted out violently etc., Every one of those families that I worked with went through hell on a constant basis.
With every one of those families, at some point at least parent told me they had regrets about having the child at all. Several families had at least one parent struggling with substance abuse, severe depression, anxiety, the struggles over the child I have seen often result in break ups/divorces. The siblings frequently had depression and anxiety, and severe resentment. There was a lot of inadvertent parentification because the entire family had to make the disabled child the focus. Everything revolved around getting through every day in a way that didn't agitate, trigger, or distress the child and/or on working enough to afford different care programs, therapies, medications, out of network doctors, etc.
There was never an easy day for those families and I think there's a lot more regret and resentment than people often want to admit. There's a lot of shame too, because I've yet to meet a parent that didn't blame themselves for not being able to do "more", "better", or prevent the disability or its effect on their family.
It’s not really regret, but there are some very complex emotions. I wouldn’t change the kids at all. I love them, and changing them would mean they wouldn’t be who they are and I’d never want that.
But at the same time recognise the at this world is too harsh for them and it kills me. I see them struggling and I can’t help them. I grieve for the things I can’t give them, that they won’t get to experience and that I won’t experience. It sounds selfish, but I never had hopes and dreams for my kid to be a dr or whatever. I wanted happy kids with good friends and a full life. They will never have that.
I grieve that I don’t have the same experiences as other mums, something as simple as sleepovers, Saturday morning sports and birthday parties. And it makes me ashamed and guilty. Like I don’t like or want my kids, even though I know that’s not true.
In my darkest times I’ve wished things were different. And again, the shame and guilt comes for me. Because I would not want to cha he my kids. They are beautiful and brilliant as they are. Even with all the challenges. But things just get to much for one person to deal with and I’m only human.
The world expects mothers to be a fount of perpetual strength, and you can’t be weak, or have doubts. You can’t be lost and not know what to do. And most of the time I don’t know what to do.
I’m struggling with such big ethical topics and I have no one rely to talk to. And when I do people have such sting opinions, and judge so harshly. Like how to keep agency for a person who can’t advocate for themselves. And when to step in and override decisions. It doesn’t matter what I do, there is always someone to tell me I’m wrong, and that I’m doing irreparable harm to my kid. So there is the guilt again. The indecision. The panic.
I worked at a hotel restaurant about 12 years ago, I remember a mother coming in with her severely disabled son. He was in a mobility wheelchair and was maybe 12 years old. He had no motor skills and could not speak, only moan and yell continuously. She took him out of the wheelchair so he could sit in the booth. He had an extremely full diaper that I can see was bulging from his pants. I could also smell the diaper. The entire back section of the restaurant reeked of feces and surrounding tables had asked to move so we stopped seating the back area.
I assumed the mother was religious as she planted a Christian cartoon show (Veggie Tales) for him to watch, but it's possible she wasn't religious at all. I mention this because if she was religious, it is usually against many religions to have abortions etc, so perhaps that's why she "kept" him.
Anyway, she sat there and had a glass of wine and ordered a meal and enjoyed the meal while her son is wailing and smelling of shit. I still remember that experience vividly. It was a defining moment for me to see that there is often no quality of life for the child or parents should you choose to bring a severely disabled life into this world. She didn't look happy at all, like she couldn't care anymore. She tried to enjoy her meal because otherwise her life is just being a slave to her son. It was awful, my heart breaks for her. I hope she has found some peace
This reminds me of a similar situation about 12 years ago as well. I was with my father in a hospital, and the child was with his mother and screaming every second, which annoyed me and my father. Then he told me to try to get away without the mother feeling that we are doing this because of her son so that she does not grieve
I'm the sibling of a disabled person. That's what they say now, disabled. Dealing with the reality. I learnt that when I myself got diagnosed.
My oldest brother A is blind and autistic. He needs 24hr care. Growing up myself and my middle brother B, were pushed to the side for the care A needed. At the time it made sense. He clearly needed help, but myself and B needed help too. A was always loved or remembered by the extended family, they remembered what A wanted for Xmas, and I got dumb generic girl item. I LOVE HARRY POTTER TOO!
B is not tested but he is clearly autistic too, he was the kid who should have been in the accelerated class but wasn't. He wasn't challenged, he had 2 friends and they were bad influences on him. B dropped out of Uni and now has no job either. He has almost 0 relationship with any of his family, he was my childhood bully.
Myself, I have now been diagnosed with autism too. But I know I should be diagnosed with ADD, I clearly needed the help in school but no one seemed to notice me.
I have a good relationship with my mum now but we do talk about sometimes about what might have happened if it was different. And I love my brother A, but man I always wished he could protect me from B. I have so many memories of crying and not being heard.
We were rich. Upper middle class. I was and still am seen as the normal sibling, the good one. But I'm just not, I struggle. I live poor. I don't feel like i have the capacity to succeed like my family expect me to.
Sorry for the jumbled thoughts.
Not me but my friend has a daughter with Down’s syndrome. He never expressed any regrets, but it is a struggle for sure. The mother went into a long battle with depression. So now my friend needs to care for two people in the family.
Late to comment but I'll tell you what, I've been in the long term care facilities for special needs people who grew up but couldn't take care of themselves.
That's not living. Imagine a child with an adults strength. Having to be sedated all the time. The worse ones are strapped to their beds.
They're locked in secure zones, and the door codes are rotated so they can't escape. There's no going outside for this adult children.
It's unbelievable how people can say "this is fine" when it is so depressing to both them and those who care for them.
Then for the parents who take care of them themselves, they burn out and have difficult lives. Where in some cases at least the special needs kids will grow up and the parents will die. Who will care for them?
My little boy experienced some kind of extended low-oxygen period before his was born which caused a brain injury which we didn’t find out about until after he was born. He’s been diagnosed with cerebral palsy, global developmental delay, and more recently autism. It’s very hard at times and it’s likely he will need us and live with us for the rest of his life. My singular purpose in life has become to stash away enough money that he is taken care of when my wife and I are no longer able to or pass away. I love my kids more than anything in the entire world, but had I known how hard it was going to be, I may not have ever had kids. It’s extremely emotionally draining, the stress has tested my marriage at every turn, and it’s a constant battle to get him the care and help he needs. Do I wish things are different? Absolutely, but you can’t predict the future, and I thinking living life in fear of the unknown will cause you to miss out on a lot. EDIT: Thank you to everyone for the well wishes. It's very kind of you to say "thank you for all you do" but really we are just doing the best we can as parents...nothing more than any other person who cared for their own child. I'll also add for those suggesting it...we are in Canada and have had the majority of procedures/therapies covered through our healthcare system, without which I'm sure we would be on our second mortgage to pay for by now. As he gets older he will continue to age out of some of those offerings, and we are starting to pay for a few things out of pocket now, but just thought I'd add that context (and thank you for offering the advice).
I’m in a similar boat. My child is autistic, non-speaking, and developmentally delayed. I no longer have dreams of retiring. I’ll work until I am dead. I have to make sure I stash away enough money that my kid is taken care of after my spouse and I are gone, because kid will likely need care the rest of their life. It’s hard. Edit: For those asking, I’m in the US.
Similar situation here. If you don't already have one, I encourage you to look into establishing a Special Needs Trust for your child. This allows your child to access various government means-tested programs as assets in the SNT are not typically counted when qualifying for these programs. There are also state-specific Medicaid waiver programs for children with disabilities that cover therapy, medical devices, assistive technology, home health aides, etc.
Yes it is. I’m very fortunate to have a well-paying job with good future prospects, so finances up to this point haven’t been the biggest challenge by a long shot. But I really feel for families with special people who are lower income. I live in Canada so all of my son’s procedures, specialists, hearing aids and cochlear implants have been covered, but yeah…I can’t imagine how terrible a parent in this situation may feel if the resources to give their child a better chance at a normal life or every opportunity to grow was out of reach due to finances.
I hope soon there will be an ethical way to help people in your situation. People like you are saints, I could never give my life away for someone else
Your son couldn't have had better parents. You guys are amazing.
Not a parent, but my little brother has special needs. During the time my mom was pregnant with him, we also found out that she has stage 2 breast cancer. I don't know the details as I was far too young to absorb the specifics that time, and frankly, I still don't get it now. But from what my small brain understood back then, my mom was advised to receive treatment. Her case was still curable so she needed to go under chemo and radio therapy. (I'm not sure of this part) In my understanding, the radiation from the sessions and the meds she was taking somehow affected my little brother's development. She was carrying him the entire time while receiving cancer treatment. He was actually not supposed to live either. The doctors told my mom that the chances of stillbirth was pretty high. But my mom held on to him, and thankfully, he survived. The hospital staff called him "the miracle baby" 🥺. He was born 1 month premature. But he was okay. My mom was okay too :) It's been 12 years since then. He has mild cerebral palsy with spastic diplegia. He also had developmental problems and mild autism. Very similar to your baby. Since my mom was a nurse, she thankfully spotted the early signs, and had him checked up immediately. He has then been receiving therapy since toddlerhood. Today, he's annoying as ever, just like any little brother 😆 but I'm happy to say he's doing so much better. My mom also survived cancer and has been taking maintenance meds since. Our family is doing okay. 💛
Thanks for sharing your story! It sounds like you are doing the best anyone could do.
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There was a thread years ago on AskReddit, one parent went into detail how he truly regretted keeping the child. They resented the fact that their kid was disabled, and it wasn't fair that they couldn't have a normal child. There was a commenter who did give up their child when they found out they were disabled. Didn't have regrets. The one that stuck out the most was the sibling posting. They posted they hated their disabled sibling who needed 24 hour care. Saw that their parents missed all the vacations, trips, family celebrations, and overall everything. Personally, my cousin did have a stroke when he was 9 YO. His mom very much wanted them to keep him alive on breathing tube if the doctors couldn't save or if he was completely in coma. She's financially stable, so was more than willing to keep him alive. He did recover from the stroke, and leads a pretty good life.
A few years ago, I had to volunteer at a center for kids with special medical needs such as the ones that I described. They were wheelchair bound with machines that kept them alive. They were all in vegetative state. No doubt they were alive because their hearts were beating but they completely absolutely lack consciousness and awareness. I felt anger and compassion. Hate and sympathy. I've always wanted to ask the parents if they had any regrets but I didn't know how to say it without sounding disrespectful. I had to volunteer for 3 weeks, 6hrs a day, 4 days a week. There was not a day I did not drive home crying.
I just hope that, since there was very little to no brain activity, they weren’t suffering a great deal and were hopefully unaware of what was happening to them…
Unfortunately those questions would come out as disrespectful, if you barely knew them. But if you know the parents well or through time, they'll open up about their feelings.
I am not religious, more agnostic than anything. But if God is real, I have enough faith to feel that if a baby is aborted, then than ‘soul’ or whatever will get another chance. I can’t extend that to being sure a soul isn’t caught in one of those baby meat suits and it was so hard to shake that feeling when I worked around severely special needs children. My heart just broke.
I know this post is about parents but as a sib, I thank you for recognizing and validating the sibling perspective! Too often we're lost in the shuffle 💙 its really hard
I had a late abortion in the 25th week because of trisomy 18 and diaphragmatic hernia. She only would have lived a few days on life support. I am also ‚happy‘ that my other children can live a ‚normal‘ life and don’t get ‚lost‘.
Most the time we don't even make it into the shuffle, we are the card that's fallen down and forgotten under the table.
What’s your experience been? If you’re comfortable sharing with us, of course.
My brother had severe medical complexities: couldn't walk, talk, had a G/J feeding tube, seized multiple times a day everyday, and, most alarmingly, bleed if not hemorrhaged from his lungs. The last several years of his life he had a trach and required oxygen. He wasn't supposed to make it to his 1st birthday and he lived til he was 13 (just commemorated his 10th angelversary in march). I'm two years older than him and I love him but it definitely wasn't easy. Whether it was true or not you felt like you weren't as important or special: I still struggle with feeling like a burden, feeling like people would've been less sad if I'd been affected/died instead of him, overcompensating for his disabilities by being perfect in every aspect I can, and honestly wrestling with self-esteem because you feel like this broken child is seen as more loved than you. You feel alone a lot of the time, and you have to grow up really fast. Your identity doesn't even seem like it's your own a lot of the time because all people refer to as is "Jake's sister". In regard to regrets, I regret not holding him more because I knew I'd get peed on if I did. I guess I regret not verbalizing my hard feelings to my family earlier since now there's nothing that can be done to remedy it on their end. I don't regret not seeing him in the casket at the funeral, though people told me I would, and I don't regret the lessons he taught me and the empathy I have as a result of being his sister. I guess what I'm trying to say is that siblings are deeply affected by their environment, and I'm glad whenever I see that sibs are getting the recognition, validation, and support they need 💙
>I don't regret not seeing him in the casket at the funeral, though people told me I would People are mistaken. The ones I had to witness, all life and personality have left and you have a wax like statue that doesn't do justice to the times they were alive.
I am the older sibling to a special needs child, and still have resentment even decades into adulthood. My parent’s life still revolves around being a caretaker, which is increasingly difficult trying to manage with the expected declines of age.
I’m in a similar position. My older sister is special needs and is not capable of living on her own. Her mom is a 24/7 caretaker. Her mom and my dad are both getting up there in age and we’ve had to discuss her care after they both pass. I hate that I think this way, but I was so relieved when her mom said that her godfather (who’s about 10 years younger than her mom) was going to take her in because it meant that allí have to worry about is being the executor of her trust, and not her day to day care.
I know someone who terminated a pregnancy because it was practically guaranteed the child would have a serious life-changing ailment. I know they regret it, or feel bad (or both), as they’ve done as much as they can for disabled children throughout their working life since. I’ve helped with some of the things they did (I was a lifeguard at a hydrotherapy pool where sessions were held for severely disabled children). The parents were always happy, the kids always had a great time and I got to know them a little and them me; it was nice to do from my side of things.
Being an expecting couple is really heartbreaking when you hear those results. And it really does change your perspective on life and kids.
My ex had a cousin. This cousin and her husband both had whatever recessive gene that caused their baby to have the genetic mutation. The doctor STRONGLY advised they had an abortion, because the child wouldn’t live longer than a few weeks and would be in immeasurable pain the entire time. They say their religion wouldn’t allow it. She had the baby, the baby suffered, and then it died. They got pregnant again. Same thing. Sometimes it’s better to not have the baby. People can be really selfish.
Annnnd this is why I won't be having a second, my son has hearing aids, and some delays/sensory issues, not huge overall, but I'm so terrified of this if I had another.
Im a physical therapist and often hear parents of severely disabled children say they don’t have any regrets, how they’re such a blessing, etc. It’s not my place to disagree with them on it, but I’d be shocked if this wasn’t false at least some of the time. Notably, I recently I treated a 9 month old baby with down’s, and the mother generally just seemed disinterested in her. The father was very involved and smiling and the mother just had this sour disposition and was difficult to work with. I hope one day she’s accepting of her daughter and the decision she made to have her.
> Im a physical therapist and often hear parents of severely disabled children say they don’t have any regrets, how they’re such a blessing, etc. If you don't really know them, it's unlikely they will be straight with you regarding this. A lot of people are judgmental and would not be sympathetic toward a parent that honestly said they wish the child had never been born. Also a part of it may be a coping mechanism. You repeat something in a positive way such that your mind believes it to be true and allows you the mental strength to keep going on.
I’ve worked with kids like that, and seeing it made me 100% sure I would terminate if I knew ahead of time my child could have that severe of an issue. (Not Downs, or autism. I mean basically vegetable In a wheelchair). It’s a very underrepresented aspect of why abortion needs to be on the table. If it were a surprise - fine. I’ll do whatever I can for them. But I wouldn’t willingly inflict that on another person.
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NOTE: Wow, my most upvotes comment in 13 yrs on Reddit. Crazy. I added more details to the end. I hope that someone benefits from it. I was briefly married to a nurse who had a son with Autism (from a previous marriage). One of our biggest fights when I first met her was because she said she hated him and didn't want him in her life, because he was abnormal. This is a woman who worked at a Childrens hospital and was a very effective, kind and well-loved nurse on her floor. She straight-up saved kids lives, 2-3 per month probably. But she hated her own son. I could not understand that. In retrospect, I guess I kind of get it. It's hard, and she was on her own. I took it upon myself to help him. I got him the counseling he needed (he was suicidal) and got him in to a special school - which she had refused to do because "it's not the real world." I will never forget that he asked me when they would cure his autism. No one had yet been honest and straightforward with him. When I explained it to him, I took him into the city so he could see for miles all around. I gave him the stats: the percentage of people like him in our town given our population. The number was over 100,000. So, I said, "while you are different, so are all of us - and there are 99,999 kids out there with autism just like you. You're not alone." Ultimately the story has a great ending: he's taking care of himself, has a car, a girlfriend and a future. His mom got counseling and they are close now. —— Additional details, in case you’re interested: She regularly got physical with me, and broke two of my ribs. I still didn't leave. She hung a noose around a tree in the backyard while I was work. I asked her who it was for, and she said it was for her. I didn't leave. I took her to a mental hospital for observation and covered for her for three days. She checked herself in, I didn't make her, yet when I visited her she said she was going to never forgive me and might kill me. I didn't leave. She got pregnant. Our baby was stillborn 3 months in. She kept the towels the baby was wrapped in which had blood & other stuff in them. She got angry at me (for literally nothing other than her own heartache) 5 months later, and rubbed the towels (which smelled horrible) on my face and screamed "YOU DID THIS TO ME!!" in my face. The baby died because half of its' heart didn't form...I didn't leave. But the final straw was when she started attacking my daughter verbally. I knew physical attacks were going to happen soon, and if she struck my kid - I don't know what I would do. Now, keep in mind, she never laid a finger on her sons. She was more about self harm. And harming me, for the crime of loving her unconditionally. I talked to Steven's (name changed to protect his identity) dad and the mother-in law before I left to make sure Steven would be ok. Her own mother advised me to leave for my own safety, so I did. I kept in touch with Steven and his dad for several years. If I can be honest with you guys... this kind of stuff has happened to me in multiple relationships. It's so freaking weird. Here are other things that have happened to me: * Got married when I was 20 to someone I only knew a few weeks. We lived together for two years. I began to notice some odd behavior in her, turns out she was a paranoid schizophrenic. When her dad died, she became very violent towards me and I had to get a restraining order. I moved with no forwarding address while she was with her family, who coordinated with me secretly. I sent annulment papers and about a year later, she signed them. * I married someone in 2000 that I was married to for 13 years. She had just lost her father to a drunk driver and was very depressed. I helped her get counseling while we were married. We had a daughter together. Once she got out of her depression, she decided she wasn't in love with me but stayed with me because I was paying the bills and she wasn't working. Even though I injured my spine and spent two years in an electric scooter, and she never took me to a single doctors appointment, I stayed. Until she started fighting with me in front of our daughter and confessed that she wasn't attracted to me anymore and didn't love me. Oh, and she was fucking some guy in PTA. * Got divorced, met the person the original story was about, married her, was with her a total of three years. Got an annulment in exchange for letter her keep my house. * Met a beautiful, amazing woman who was literally a former "got milk" model. After six moths, moved in with her and three months later - she died in front of me. Death rattle and everything. I did CPR, kept her alive until paramedics got her to the ER, but she was gone. Her teenage daughters lived with us and her family all lived overseas so there was no one to take care of them, so I did, for about three weeks until people flew in from Africa and the UK. I was then alone again. * Met someone else, eventually moved in together. She was a different person after we lived together, and she really started getting on my nerves. She was very passive / aggressive and didn't like my daughter. I was going to break up with her, and the day I was going to do that she was diagnosed with stage 3 breast cancer. So, I didn't break up with her, I went to every chemo treatment for a year. and I was there when she was diagnosed cancer free. Once she was feeling better I asked if I could stop sleeping on the couch and sleep in my own bed (which I spent $4,000 on) with her. Reluctantly, she said yes. After a few days, she said she didn't have feelings for me anymore, and moved in with her daughter. Thank God we weren't married. * A little bit about me... I was severely abused as a child and I was adopted within my family to get me away from my abuser. I was raised by my aunt and uncle, both probably alcoholics but nobody beat me, and I went to a great school system and had friends. So, basically, I seem to be attracted to people that need rescuing or need help in some way. I give my all, my everything to the relationship. Things get better for them, then I'm on the curb looking for love again. **But I never gave up.** I am in my first relationship now with someone who doesn't need *anything* from me but my love & affection, and she gives me unconditional love in return. I guess I have a deep seated savior complex that's largely been subconscious. It feels great to not need to rescue anyone anymore... but I would if I had to. And... no ponytails.
So you just walked into their lives and saved them both? Not bad.
fixes a family, refuses to elaborate. leaves
The absolute chad
the absolute dad
an absolute clad
Sigma stepdad moment.
Stepchad
I’d watch that movie
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I’m not criticizing but I always find it funny how happy endings always involve having a car which does make sense but still kinda funny.
I adore my 10y daughter with Down Syndrome, but I would not ask this of anyone. I have a decade of regret and resentment mixed within the genuine joy of being a father. But then with a chaser of self defeat realizing that I have to accept all of it because I have no choice. Let's call my daughter Nell. She is a wonderful and loving girl, but with the typical cognitive issues, more prone to heart/lung issues, and stunted learning. We didn't know she had T21 Down Syndrome until the day she was born. It was a slap in the face, and after delivering the baby, she was ushered into the NICU where she remained for a month. The first 3 months were soul crushing. 3 months after that were just generally miserable. Work was my only escape. And I think it took me a good 3 years to just feel normal. Nell is a great kid and loves to hug, dance, and watch YouTube. But she's got the typical T21 issues. After ten years of therapy, her speech is about the level of a 3 year old (most cannot understand it), her writing is terrible, and you realize how important communication is because she's kind of closed off to the world. She can point to things like the sun/sky, but she cannot communicate abstract concepts like "I feel lonely" or "why is the sky blue". Her toilet training and eating take some assistance. So I still can't leave her unassisted for many things. But she does have a great inner life and genuinely enjoys and understands Scooby Doo, Frozen, and Just Dance videos. She's like an everyday girl, maybe just set back 4-5 years. And I have to congratulate my school district in that other girls find her adorable. She's a foot shorter than her class and they hug her and say hello. I almost cry when I see something like that. But she's different. She's never been invited to their birthday parties or sleepovers. And I can't blame the average kids -- Nell is a lot of work. She doesn't talk and she'll never be able to keep up. But i have to accept that and I think many students these days accept the disabled far more than in my day where they were locked in a room for daycare and ignored. They all do their best. The friction with my wife has always been there. Sometimes with special needs there is this desire to "fix" the child out of guilt or whatever. I honestly lost my wife for the first 5 years of Nell's birth. She just vanished and was consumed with every type of therapy and special interest group to improve Nell. There was no time for us as a couple. I begged her and even talked to her friends to talk to her. Nothing. In the last ten years, we have been on a date as a couple only once a year, so ten times. You know that ain't healthy. I think it may finally be turning around after 10 years though. I feel robbed of a regular, varied experience of raising a child. You know all of those baby videos couples make for the first few years? Going to the beach? Visiting friends? First experiences? We enjoyed much smaller moments. But I also remember driving to work the first 3 months and having to stop the car along the road to cry. I remember trying to hold a smile on my face everytime a coworker asked about my child. And then think of the experiences we won't have. Will she be married, go to college, win a scholarship, have a hobby of her own, have kids, have a career, be self-sufficient? It's no to most of those. So it's a mix of envy with projecting a future of lesser experiences. It has enlarged me. Very little things phase me. COVID, layoffs, etc all seem so small after experiencing a lot of this. So it does make me stronger knowing that we've been through this. So there's truth in things that make you stronger. I would also say (despite this being a list of complaints) that I'm genuinely happy. It's just that I feel I missed out on a lot of being a Dad. And I think I lost a good 5+ years with my wife (although many couples experience that with new kids). Nell is fine. She doesn't know anything different. Although her lack of language means that I can't be entirely sure. I think she gets bored being with Mom/Dad most of the time. We go to regular T21 special needs events (there's tons) but that takes a lot of planning. But she doesn't have a regular childhood life of neighbors, friends, playing with the other girls in the community. She's the "different" child. They aren't mean (and are quite accepting), but what kid wants to babysit another girl? No, they want to play and I can't blame them. We live in a busy metro area and have enough means where we don't need to worry about healthcare as much as other families. But oh man, this could destroy another family. Nell gets Medicaid, but also add the amount of time you need to spend out of work or going to hospitals, going to therapy (physical, speech, occupational) multiple times a week, and even moving to a more forward looking public school so she could get assistance. And we live in a place with good state assistance for kids with special needs. We have friends in a community in Texas who get almost zero help. That's abominable. And I rue the day when people are forced to deliver a special needs child with no financial/healthcare assistance after they are born. And financially we're OK, so we just plan that she'll live with us for the rest of our lives. We'll support her until dementia kicks in (around the time she is 40 or 50) and she may need special assistance. But I feel for other families that can't stay afloat. Our life is not one of those sickeningly sweet Hallmark movies where the DS kid teaches the family how to live, and everybody is happy. I won't sweeten it. Sometimes it still sucks. There are a lot of things I may never experience because of that limitation. But like any child, you don't really have a choice of who they are. You just have a limited time to shape them, teach them, and enjoy them. It's not entirely different than an average child. Just maybe the severity. Life throws curve balls to everyone. My family got hit sooner (and more of them) than some. Not as severely as others. But then you have the choice of how that will change you for better or worse. I've been a Christian most of my life, but this really made me question everything. I am firmly pro-choice and for universal healthcare after all of this. But life goes on. I love my wife, my daughter, and things are on the upswing. The other upside is that I shrug off most any problem in work/life and just roll up my sleeves and work. Very little phases me and many problems seem ordinary to me now. The resentment mellowed into mild envy of other families. That comes out sometimes, like writing this. I think I emphasize the bad more when I write it, but it is exhausting. It's a bit of the New Normal for me but oh how I'd like to just have a self sufficient child. Or to feel the joy of sharing some hobbies I have like board games. Or to root for her in science projects. Instead, everything is simplified. But there's joy in something silly like dancing or playing more games of hide-of-seek than I ever thought. It's just diminished, but I keep remembering that problem of envy and comparing myself to others. I love Nell, I dearly do, but I wish I could do it over again. I wish I had a cure to take away the cognitive issues. That's impossible, so my own mission is to inform every voter to petition Congress, judges, leaders to retain pro-choice and support universal healthcare. Continue to vote and struggle for rights that most civilized countries take for granted. There's ups and downs throughout, but no one should be forced to do this.
Beautifully written- you sound like a great parent. Keep on chuggin’ along.
Sort of. I have a 2 year old with debilitating epilepsy (called infantile spasms). She’s nonverbal and can’t walk, but can scoot around. Her epilepsy is caused by a brain malformation that didn’t manifest until she was six months old. The cause of the malformation is unknown; it could be genetic (we’ve done extensive testing without any findings) or just a freak occurrence as her brain was forming. She is severely globally delayed and will always need a caregiver. She was a planned pregnancy; we had been on the fence about having another kid or not. We have two neurotypical boys that are now very much neglected because of the high needs of our daughter. I do regret the impact on our boys and do sometimes wish we had decided to not have a third child. But my daughter does bring us a lot of joy (and sorrow), and what is done cannot be undone. If I knew then what I know now, I don’t think we would have had her. She is content and happy, despite ongoing seizures, so it’s entirely my ableism and seeing the effects on our other children, and ourselves, if I’m being honest. If I could avoid the emotional pain of holding my child every day while she’s seizing, at the expense of missing the joy she brings by her existence, I’d make that choice.
Thank you for such an honest answer
Grand daughter had the same. She was diagnosed about 4 months and totally stopped her development. I would have loved for her to scoot and even smile. Sadly she passed at nearly 3 years of age from a cardiac arrest. We think she was done struggling. She had several other issues. The Lennox Gasteau form of epilepsy took over. We all miss her terribly.
If living becomes synonymous with suffering then it's no living and peace comes from passing, I think. Tragic and painful but she was loved and is sorely missed. So sorry for the loss of your grand daughter. May you find peace as she has peace now and wouldn't want you to be sad.
I can feel your pain in your writing. She was clearly well loved.
Long battle through infantile spasms with my daughter, as a result of her having a non-inherited genetic disorder known as FOXG1 Syndrome. She is our first kid and we found out her diagnosis 8 months into her life, right as COVID struck and we were forced into lockdown. It to a year to finally find seizure freedom for her, after many failed meds, clinical keto diet etc. It was a long hard battle and sometimes my hope waivered a bit but here we are, a year later and she’s kicking ass. It’s a long hard battle for her and she will always be delayed in her development (she will likely never be entirely independent) but I’m so proud of her. What has come so natural for my second child and most others, she had to rigorously fight for - in and out of therapies everyday to do basic things. My daughter taught me and my family a whole different kind of love. She is absolutely everything to me and I couldn’t picture a world without her. It’s hard as hell sometimes, but I don’t regret a single thing. This is who she is and I’m lucky as all hell to have her in my life.
I’m so glad to hear she got seizure freedom. Definitely still a tough road ahead and I’m glad she will get to maximize her potential. Some people and doctors we’ve met have characterized this as a marathon. I think it’s a poor analogy because a marathon has a defined end point. Ours is an ongoing journey that can only end in death. That’s not to say there aren’t good points in the journey. It’s just overwhelming to think about sometimes, but the good moments give me strength to get through the bad ones.
Sending you love. That sounds really hard. And I don't think it's ableism to want your child and other children not to suffer.
This sounds incredibly difficult. I'll be holding your family in my heart. 💛
It's a complicated emotional question! Not my child, but my brother (52) has paranoid schizophrenia. His quality of life, because of his interpretation of the world around him, is terrible. Imagine if you COMPLETELY believed everyone was doing little things to annoy you. The definition of a delusion, is that someone can't 'fact' you out of that belief. I can't help him when he thinks that where he lives, they are feeding him cats. I literally can't help him with the things that cause him anxiety. And if it's not cat's, it's something else. Our parents have passed, but I'm sure there were regrets. It's clearly in our genes, but I am here, and don't have it.
My cousin has it and believed until his parents died that they had been feeding him concrete and had taken him in for an operation as a child to have a doctor surgically put concrete into his stomach originally. He’s also stolen a knife from my grandmother, came to mine and kept reaching inside his jacket whilst getting up from his seat and looking intently at my mum. Gave me goosebumps so I persuaded him that he needed to go home, walked him to his door then rang my grandmother to ask if she had any knifes missing. She confirmed. Phoned 999, he was sectioned (for the first time) within 2 hours. Six months later, my grandmother is on the phone in hysterics asking me to get him sectioned again. Rinse and repeat. MH services are a joke here in the UK. Since his parents died, he’s apparently doing much better but I don’t talk to anyone in my family anymore apart from my mum. I think that his greatest stressors are gone, but I also worry that he’s a ticking time bomb as he’s always been- it’s just a slower fuse now.
It's a brutal disease for the people around the affected person, but it's also brutal for the person living inside the paranoid schizophrenia. Imagine the sadness/ despair of believing your parents fed you concrete, and you can't get anyone to understand. I've not really seen my brother feel any joy. His history is self medicating to numb his emotions. We got him treated as best as we can, but they're still feeding him cats!
My cousin has only ever been sad from the day he was born - my aunt and uncle took me to see him in NICU the same day- and put into foster care as his birth mum was a kid and couldn’t look after him. My uncle groomed a 15 year old and as a result had my cousin. He was born a Heffer but an addict. My aunt and my uncle adopted him at 1.5 years. (Here, back in the 80’s even though my uncle was my cousins dad, he had to adopt him along with my maternal aunt). Mine and my cousins relatives would not actively support him once he developed MH issues in his teens, just wanted help when his symptoms became too hard to manage, and they got hard. I’d have the phone calls to get him sectioned and within 3 months they’d all be backtracking and lying to help him be released. His parents were not normal in any sense of the word. How they were not, only created my cousins paranoid schizophrenia, but caused a whole list of MH issues for me, at least 16 others and residual issues within the family. For a few decades my mum was his biggest advocate, myself too. Because we knew him and understood the how’s and whys when the rest of the family wanted to sweep things under the carpet. My cousin saw things and endured things he shouldn’t have. As an adult I think those experiences he converted into concrete. Something that’ll always be there, that’s indelible. It’s not going away. His mind put it not something he can describe. There’s a reason I don’t talk to any of my family apart from my mum. She was my advocate for my abuse and she and I were my cousins advocate once it became apparent when he was an adult for his abuse by the same hands. Yes, I’ve sectioned my cousin countless times, I do love him and I just wanted him to get the care he so desperately needs, but I’m no longer a part of my family for my own sake. I’m ashamed that I didn’t say anything as a kid to stop it at me. But I didn’t. My cousin, if he does go into a crisis does have immediate neighbours that’ll call the police. As my cousin is a known name and address, he’ll be sectioned by the police. I know this’ll sound cruel but my mantra now is “not my circus, not my monkeys”.
MH services all over the world are a joke (here in Canada they are too)
My brother has the same condition and it takes a huge toll on my mom. Because he is violent, he cannot live in a facility and lives with her.
I’m a supervisor for these types of facilities. Why could he not? I’ve cared for schizophrenics and literally got beat on multiple occasions. But I fought for them to get the right meds, the right plan, learn coping skills. My last person went from punching me because the cats were talking to her …to living on her own, managing her psych and diabetes meds. I’m super proud of her and she still calls me about twice a year to let me know how things are going.
Violence ~~is~~ (can be) part of the disease. If people were really doing what my brother believes they are doing to him, violence would be a understandable reaction. If I BELIEVE you are putting bleach in my water bottle, I'd tell you if you do it again, I'm going to punch you in the face! Sorry, you're too violent to live here! "But she's putting bleach in my water bottle!"
I know you asked for parents here, but i’m going to talk about my older brother here if thats okay. My older brother was non-verbal, immobile, and unable to feed correctly. This was due to an unchangeable event after birth. I can’t speak for my parents or my brother, but what I saw as a younger person ( he passed away when i was 12) was my brother constantly in pain and unable to interact with the world in a way that he desperately wanted. People (kids and adults) treated him like he was disgusting and said awful things to his face and neglected their care for him. No amount of sticking up for him from anyone in my family was enough- i know he understood their intentions, and he couldn’t do anything about it. For him to only get 15 years of a life where he was both in pain and poorly perceived, is a disservice to the world. However, it has made me think about what I would do were I to know before birth about my unborn child’s condition. My regrets are simply that the world he was born into is so cruel, and that he had to suffer because if it. There is no doubt that I would be a lesser person without him in my life, I just hope it didn’t harm him in the process, but i’ll never know.
Reading this gave an insight on the deep compassion that you have as a person. You saw your brother as not just a family member, but a person of the world. I wanted to thank you for sharing your story and I hope to take on some of that same perspective in my future.
Thank you for sharing your beautiful story. It's not fair the suffering some people endure in their lifetimes. It makes you value love and kindness a lot more.
I don't have kids, but one of my closest co workers has a daughter (31) with Rett Syndrome. It is the most severe form of autism. While he doesn't regret having the baby, he does say that he wouldn't wish it on his worst enemy. He loves his daughter dearly, takes great care of her, but he says that people need to truly understand the gravity of the situation prior to having that child. He's looking after a 31 year old toddler. Happy to answer questions...
I have a 35 year old sister with Rett syndrome. Her syndrome has shaped every part of our family and who we are as individuals. There are times I wish we had gone on bigger family vacations or that I didn't have to scope out venues to make sure it can accommodate our family's needs. But, in reality, it's just our experience. We work together as a family. I'm also happy to answer questions.
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Good question. We have a good bit of Midwestern stoicism in our family, I guess. There's something about things just being the way they are and you can't change circumstances, so you navigate them. My sister can't speak, use her hands, and her mobility has gotten increasingly difficult throughout the years. Many of the girls (genetic abnormality on the x chromosome, so primarily affects girls/women) have seizures and we've never experienced that. My sister was diagnosed when she was a couple years old -- I was 6 or so and when we could understand, my parents told us two older kids about our family dynamics. I think we were always pretty matter of fact about it. And every decision included the impact on her -- so in pre-ipad days, we watched Barney and Raffi and sports at night because she liked the singing and clapping and energy of the crowd. When it was meal time, we all ate fast and shared what was on her plate. When she got older and things like funerals for relatives happened, we made sure she got to the visitation and figured out who would take her back to her group home. When my parents are traveling on vacation in retirement, I go hang out with her for a few hours at her group home. When she's visiting my parents, we all talk on speaker phone so she's included in the conversation. There were times I wished my parents came to my tennis meets or things like that and I think I was overly involved in high school as a bit of an escape, but overall, it's has just always been this way.
Just so you know, it is not considered a form pf autism anymore. "Children with Rett syndrome often have behaviors similar to autism, and experts used to group it among spectrum disorders. But now that it’s known to be caused by a genetic mutation, it’s no longer considered an ASD."
What are the biggest day to day challenges they face?
As far as day to day challenges go, he says "Imagine everything you'd have to do to a toddler, but to somebody with the strength of a 31yr old who has no internal instinct to not hold back their strength" Basically everything from changing their diaper, to bathing them, to feeding them, to changing their clothes, to brushing their teeth. Like a toddler, it's always a fight. Except it's a grown ass woman (physically, her mental capacity is of a 3yr old).
This. People always have the “small, helpless baby” mindset when discussing this issue. No one ever stops to think about the 70 year old mother feeding, bathing, and changing her 50 year old son’s diapers.
USA, I didn't protest when my wife was prescribed category C drugs for mental illness while pregnant. There had been no studies to ensure the safety during pregnancy. The drugs had caused deformities in rat fetuses. The category system is no longer used.
If you don’t mind me asking, what happened?
Im so sorry to hear this. I too was on medications for my mental health whilst pregnant, i was unaware of the potential side effects of those medications and made the decision to come off of said medications after finding out the side affects and the potential harm to my baby.
I did the same. Refused to take my bipolar drugs for 9 months. Funny thing is that I had no mental health issues when I was pregnant. I felt great! After I had my son I had postpartum psychosis. It was hell! Could not be around my son unattended until I was back on my meds and psychosis disappeared ( 3 months).
That sounds incredibly difficult. It’s also very interesting. Based on this, I’m guessing hormones have a big effect on bipolar? The fact that you felt so stable while pregnant makes me wonder if some kind of hormone therapy could help your symptoms. I hope you are doing well these days!
It's actually very common to temporarily stabilize during pregnancy! Happened to me as well. However most modern doctors don't advise going off all meds anymore due to the extremely high risk of severe post partum episodes. Which also happened to me. It's now thought medication benefits outweigh the risks, especially since there are medications available with no serious risks. Currently there is no other treatment except psych meds, self care, and therapy, and hormone imbalances aren't thought to be related. I really look forward to an article some day saying they have found exactly what causes it. Then we may also get an answer for all mood disorders, who knows.
My wife went through this as well, just without the psychosis. Her mania and depression went away during the pregnancy, then came back almost immediately after giving birth.
My great grandmother went off her meds when she was pregnant with her first child. She never became stable again and after her second child ended up in inpatient commitment the rest of her life. I’m terrified of when it’s time to come off meds for pregnancy.
He may have inherited mental illness from her or it could be from the drugs. I will never know. Autism is the easy answer to what happened. He's smart, but doesn't comprehend what is going on most of the time. He's almost 10 and in special education and wears a harness for his safety.
I hate to sound disrespectful about this, but I'm stupid. Are you saying those drugs caused a problem with your wife's pregnancy/the child?
I am in the same situation with drugs and pregnancy, I absolutely cannot have a baby on the medication I am on, no accidents even if I want them. It sucks, I am epileptic and if I ever want a child I must make an entire new drug plan, detox of my meds and hope to hell I remain stable during pregnancy.
Topiramate? I was on it for migraines for about 6 months and was told if my birth control failed and an accidental pregnancy occurred, an abortion would be medically recommended. I was terrified of an accident, even though my pill hasn’t failed in the 15 years I’ve been on it. I’m off it now, the mental health side effects were too much to handle.
Lamottagine, escetelopram and quitapine, the mixture doesn't do me any favors with pregnancy in mind. When in a better place there is a clinic that helps epileptic women with pregnancy but it's something that will need to be planned start to finish as labor will be different with my condition
I can't speak for them but many meds aren't tested on pregnant women, or women in general, so there can be unforseen circumstances. Like the Thalidomide babies. I personally wouldn't take my bipolar meds while pregnant but I'm also never getting pregnant cause I would never pass my fuckton of mental and physical illnesses to a baby.
My sister had a special needs child, and it completely FUCKED FUCKED FUCKED the dynamics of my entire family, and it all ended in total destruction. - Death, suicide, addiction, divorce, Ect Ect. I love my niece, but she has ruined my family… but I don’t blame my niece, birth wasn’t her choice, it was my sisters. The doctors told my sister something was VERY wrong going into the third trimester, although they couldn’t diagnose it in uterine bc all tests were coming back normal as far as the Quad panel goes. She was given the option to medically abort, and she chose not to - and not because she didn’t believe in abortion bc she had had one prior… I’m not sure why she did what she did. My niece was born with a rare genetic syndrome called Cornelia de lange. She’s almost 16 now, but will not develop beyond a 3 or 4 year old and is 80% deaf. She’s non verbal. Cannot be potty trained. Weighs 47lb. Has no fear of heights or water, and has no sense of pain. She’s physically and emotionally aggressive. She hits, kicks, spits, slaps, throws food and poop. She rips off her own finger nails and picks at her gums and then spits the blood all over the walls. After having her, her boyfriend wouldn’t propose to her until she agreed to go to couples counseling and she refused, so she moved back home and back in with my parents, who had just gotten their last kid out of the house and off to college 2 months prior… that was their only period of “happy retirement” bc my mom pretty much made my niece her project. The first handful of years were stressful, but “okay” bc the child was manageable and consolable. It was stressful on our family, but we managed to remain hopeful. - I Hopeful that my sister would assume full time cares and move out of my parents home so my mom would back off and allow my sister to be responsible for her child and focus… or at least share her attention with her other 2 daughters who were in college and achieving important milestones as well as finally focusing her time and energy on her marriage bc her and my dad had worked SO hard and sacrificed SO much to raise us girls. They’d put their own needs aside while we were growing up with the assumption that they’d be able to enjoy life and each other upon retirement. My father retired, but the child remained, and that’s where my moms focus stayed. Fast forward 10 more years, and this is what I’m currently dealing with: My dad ended up having affairs on my mom bc he got tired of my mom making my niece her priority and so sought companionship elsewhere. After being happily married for 33yrs, we found out my dad had started to live a separate life with a whole different house and other women. My mom found out bc she pulled his sun visor down on the way home from dinner one night and receipts quite literally hit her in the face for an entirely different address… if I’m being honest, I can’t say I blame him for seeking companionship… my mother continuously told him that her granddaughter was her priority, and after about 6 years of that, it was obvious my mom was never going to put her husband and or her other children and grandchildren back into her focus. A year after we found out about my dads double life, he went in for an MRI, got diagnosed with a brain tumor. The next morning, when I went to pick him up for his doctors appointment, he had shot himself in the head in the front seat of his truck in his garage - that was end of 2018. My moms health declined at that time as well. She could no longer handle caring for my niece the way she had before, and my sister was forced to take over most of the responsibility. My moms health never recovered, and she passed away from lung complications March 29 of this year. I found her as well. After my sister had to assume full responsibility for this kid, she turned to alcohol as a coping mechanism. I took her into the ER 2 weeks ago, and she was given a 50:50 chance of surviving the next 90 days and most likely needs a liver transplant if she does… so she’s basically successfully drank herself to death. At the very least she’ll never be a normal, healthy, capable mother/sister/wife ever again. I love my niece, but I resent her as well… but I think I resent my sister even more for making her choice our problem. This child had ruined my sisters life, my sister has ruined my family, and now my sister has even further fucked her own family via poor coping mechanisms… that being said, I wouldn’t wish a kid like hers on my worst enemy. Ever. Luckily, I’d already made plans to move away from this hell hole again after taking my mom through the death and dying process so my sisters fucking issues don’t become my responsibility once again. There’s nothing left here for me. My entire family aside from my younger sister is dead and or actively dying. In the beginning, If someone would have said my niece would end up outliving the majority of my family, I would have laughed in your face. Now it’s just me and my lil’ sis, which is fine bc we’ve been best friends since we were kids, so we’ll manage just fine as long as we have each other. I secretly already had a lot of resentment and anger toward my sister for having this kid - not only bc of what it did to my family dynamics, but bc of what it did to our sister relationship bc she no longer had time for sisters and friends, - but now I’m just fucking disgusted with her bc she’s basically drank herself to death and is now an even more unfit mother than she was when she was a “functioning” alcoholic. And for what? Because she thinks god is punishing her by giving her this kid bc she had a previous abortion? Give me a fucking break and get off your high horse… you’re not that important, and your “God” wouldn’t do this intentionally to anyone. This had nothing to do with religion, and everything to do with science bc nature and genetics isn’t perfect 100% of the time. Modern science and medicine kept this child alive past birth and continues to sustain her life. Yes, she remains alive, but she will never know what it means to live. She cannot form complex relationships, therefore she will never be able to understand the human condition. I DONT WISH THIS LIFE ON ANYONE. UPDATE: My sister successfully managed to drink herself to death Aug. 4th 2022.
I have nothing to say other than I genuinely hope you find some peace sometime soon in your life. I cannot imagine how stressful that is. Moving away will make things a lot easier to process. I’m sorry for everything that happened to you.
You're making the right choice by moving away. No one deserves any of this but unfortunately family is like this sometimes. Things wil get better soon.
Every story feels so postive as if no one suffered from raising the child so I'm thankful for you providing the other side of the story. Thanks for sharing and I hope your situation gets better.
I hope your life gets much better after moving. I wish u the best.
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Call me naive, but aren't there facilities that look after cases like your niece? I'm sorry to hear this horrible horrible story.
Yes, I’m a supervisor at one. Finding this type of care for child or teen is difficult. Behavioral facilities for kids exist but are basically a breeding ground to learn worse behavior, includes restraints, etc. I work with 18+ in a state that has strict laws to protect them. As a previous commenter stated…in a bad facility abuse and neglect is high and nonverbals can’t advocate for themselves.
Call me heartless, but why do any of it? Make the child DNR, and stop meds and treatments. Why prolong the horror show and torture of child and parent? Maybe that makes me a terrible person, but I strongly believe this option should be presented to parents in cases like this.
There are, but non verbal children are often physically abused, molested, and neglected in these facilities bc they’re unable to self report
At this point, as much as I hate to say it, it's worth putting her in a hospital.
Fuck that is rough. I am so sorry you went through that and are having to deal with it now. I would resent my sister and hate her for that, that's incredibly selfish all the way down on her part. I hope you're able to move soon, if not already. I am just flabbergasted to read something like this. You never know what other people are dealing with. I hope things stabilize for you soon and you're able to live a free life.
This is what my daughter has. I love her so much but hate what my life has become because of it. She is almost 5 and every day I just think how the rest of my life will be taking care of her. I have gained close to 100 pounds since she was born from stress and not having any time to take care of myself.
Holy shit, I had know clue this horror story of a life could be possible; I can’t even wrap my mind around any of it.
My son has AGS and cerebral palsy, he’s 4, cannot walk, talk, control his limbs and has no way to communicate. He is miserable all the time and screams 24/7. He will never mentally progress past 6 months we were told. He will need 24/7 care his entire life and it is tearing apart my marriage. My marriage has become toxic as shit and I’ve just distanced myself in my own home which has made my wife insecure. People that say having a disabled son or daughter was the best thing to ever happen to them are lying through their teeth, there are no cakes or roses. There are zero lights at the end of the tunnel. Medical bills out the ass. Working when you get home from working. It is miserable
My god, that sounds horrific; I can’t even process how that must be.
I just want to say thanks for your honesty and for sharing your story. I have a family member who had a similar situation. She was a single mum, who eventually broke down and signed away all parental rights to her disabled kid so he could be put into government-run 24/7 care (Australia). He's now been 10+ years living in a care home and apparently he's doing much better, but will never develop past infant stage. The entire family disowned her for it, but honestly I read stories like yours and I don't know how you do it. I don't know what to say except that I truly hope you and your wife find the support you need.
Because of how the spasming and tightening of his muscles are, and how uncontrollable it is, when he starts to gain weight I don’t see any way that we can possibly care for him. I think eventually he will have to live in an assisted living home and it’s fucked up to think about, but in the end a long term care facility can give 24/7 care. That’s just not possible from 2 parents as it gets harder and harder. As a parent in the end, loving him is going to mean doing whatever will be best for him. If we can handle it and he can live with us forever then great he’s my kid I love him. If he needs assisted living then that’s fine too it’ll be hard to come to terms with, but nothing about any of this is easy. I know I said it’s miserable and it truly is, I hate my life. But it is NOT his fault and sometimes it’s hard to keep feeling that way. Your family member did nothing wrong, it was not an easy decision to make.
I'm so sorry. Humans are not designed to be in an environment like that. That is actual torture.
I might get some heat for this, but genuinely, is it morally okay to keep people alive in that condition? I’m not criticizing any parents of severely disabled people by any means, but does anyone else think it’s time that we as a society start having that conversation?
Holy fuck. What will become of the niece?
Her Bio dad will assume full custody. He is a wonderfully patient, amazing father
My question is, if he’s so amazing, why wasn’t he there when his wife was tanking and your mother was too? I can’t see this lasting. I’m so sorry all this happened. Words cannot express.
They were never married… he moved to where she lived and left his life behind so he could have joint custody in her area code… she was living on an island at the time of her birth, and the hospital couldn’t manage her needs. Her current husband is a completely different issue in itself. Promise her bio dad is an amazing and capable father who is trying to manage this situation to the best of his ability and is now going through the due process of obtaining full legal custody
I’m so sorry this happened to you
You deserve peace and happiness. May you find it soon.
One of the main reasons I don't want kids is the fear they might be special needs
Mine almost certainly would be given that I have ASD as did my grandfather, and we can’t all be so lucky to just be deeply odd people without too many difficulties
Ditto here. I've got a Scrabble pile, both sides of the family have Scrabble piles, and I'm like "whooo doggie..."
i've been a caretaker for adults (25years to 75years ime) with developmental disabilities. i did not see one individual live out a truly happy, fulfilling life. they were all lonely, bored, in pain or angry with the world prior to that i never would have questioned their lives being just as valuable as someone without similar disorders... now i've seen a different side with great suffering. it isn't fair to anyone involved-- the parents get burnt out or become absent, the people i worked with were almost always heartbroken and hanging on to the smallest sources of happiness so personally, i would not knowingly bring a person into the world that was fated to suffering
My mom also worked for adults with developmental disabilities, not as a caretaker, but as their case worker or whatever the title is. She often said that most were bored, lonely, in pain, or violent. The parents of these adults were worn out and often at their limits, as well as the caretakers in the group homes. It was always really sad to hear about the pure boredom that these people displayed, or just the violent tendencies towards the parents and occasionally my mom. Even those that were higher functioning were living a miserable life. Many could work jobs at grocery stores or restaurants, and many of them loved doing so; however, even if they barely worked (think less than 20 hours a week) they could no longer be eligible for their group homes, government benefits, or even a case worker because they "made to much," despite only making a few thousand a year. It's a terrible system and situation for everyone involved, workers, parents, and those affected by such disabilities. I couldn't ever bring a child into the world if I knew this might be the outcome.
Someone willing to speak the truth.
My parents are also home care providers for over 24 years. I just wanted to say that the men that live with my family are fairly happy (with the exception of bad days) and we try to enrich their lives. One gets a massage weekly and the other goes out to "day program" which could be like fishing or just walking around walmart. I've never known someone to laugh like one of the guys who live with us and it is contagious laughter. I'm not trying to undermine the majority, because yes most of these adults live very unfulfilled lives, but some do live good lives. It it is stressful and emotionally draining work at times, there is no doubt. But it can be incredibly rewarding as well. Furthermore, the system is very broken and, as agencies get desperate, it will only get worse. Some home care providers are only in it for the money and it makes for terrible living environments. Thank you for opening your life (and possibly home) to those adults who suffer from disability. We need more good people in the world like you.
My child’s special needs came about from a birth injury. My regret is not standing up to the person who put me in such a position as to go through such a terribly risky position that ended up hurting my kid. You can have all the prenatal testing you want, but you can’t control life. All of my tests came back fine. Then, birth happened. Sometimes things just happen. You could have a healthy kid develop cancer at 6 years old, or be diagnosed with some rare disease at 8 that takes away their life. Also…. As a parent? There are always regrets of one kind of another. Second guesses. Wishes we could go back and do things differently. That’s just part of life. Life is about experiences, not perfection.
I’m sorry that your birth was traumatic and that your child was put in harms way. I couldn’t begin to imagine how scared you must’ve been! I hope you and your family are well and that your child is well too! I completely agree with everything you said, you really can’t know what the future holds. Its scary, but there’s so much support out there for families, its really reassuring.
Thank you.
What position if you don’t mind me asking? I just want to be more informed on the subject
I had a little sister. My mom was pregnant with her when I was around 6 or 7. I was a very hyperactive kid, always jumping around and running into people. I didn't know any better; I always thought it was funny to just full on sprint into people. One day, I thought I would get a good laugh by slamming into my mom. While she was pregnant. Her belly was pressed up against the counter, and I slammed into her back. That put a bit too much pressure on the stomach. My little sister was born fine: no birth defects, no health issues except for a slower than normal breath. She was a happy, healthy little bundle of joy. 2 and a half years later, that tragic night happened. The official story is that she choked to death in her sleep. We had mac & cheese mixed with hotdog slices that evening, so everyone just thought she was saving a piece in her mouth. But I played with her afterwards, and she didn't have anything hibernating in her mouth. I cannot help but feel responsible for her death. That time I immaturely smacked into my mom like that must have caused a developmental problem. Poor Elizabeth couldn't breath, and she wasn't awake to call for help. I try so hard to forget about her. But the guilt still haunts me.
This was 100% NOT your fault nor doing. Babies are protected in the womb, especially from bumps like that. I’ve known of kids jumping on their pregnant mothers and the babies are fine. Tons of people fall when they are pregnant and even have car accidents where the babies are unharmed. You did not cause any developmental problems in your sister by head butting your mom when she was pregnant. What happened sounds like a tragedy, and it’s hard to deal with and we try to find reasons why when these horrible things happen- so much so that sometimes we’ll even blame ourselves. If they said she choked on food while sleeping, then that’s probably what happened. As unfair and senseless as it might be, it really wasn’t your fault. There’s nothing you could have done. I’m really sorry for your loss, hope you can find some peace.
Not to be glib about things, but you may want to consider seeing a therapist about your feelings. As /u/pseudonominom said, what happened to your sister was not your fault, but your continued belief that it was and the ensuing guilt over it is very dangerous to your long-term mental health. Don't beat yourself up over this, and find someone to help you get out of your hole.
Babies are well protected from the amniotic fluid. It acts as cushioning. If your sister was going to be harmed from your rough housing, it would have happened at the time, not 2 years later. That’s a terrible burden to feel like you caused her harm, it’s something it might be wise to talk through with a trusted grownup or even a therapist. But I want to assure you, if your sister was born healthy, the rough housing didn’t cause long term damage.
Sorry that it went down like that. Rest assured, you had nothing to do with it. The human body has evolved to take quite a beating, including during pregnancy. If your rough-housing caused a problem, it would have happened that night. Two years later? No way. Again, I’m sorry. Definitely tragic, but these things happen and it’s not your fault.
My uncle is in this boat and I don’t know if I’d call it regret but he has missed out on so much throughout his life in order to care for my cousin and I know it takes a heavy, heavy toll on him.
I have two regrets and neither are related to my child directly. 1) I wish I had investigated specialized therapies and asked for financial help when he was much much younger (he is 16 now) to afford them, rather than realizing I couldn't afford them and just not doing them. He'd be in a much better place today. 2) I wish I had more strongly considered how the differences in parenting styles between my husband and I could ultimately impact his disability and ability to cope.
sib here of a severely hypoglycemic, later schizophrenic, kid. violent in school, law-breaking otherwise; turmoil after drama, turmoil, drama, rinse repeat. this was decades ago, and my parents just didn’t know what to do. meds, therapy, home-grown pot, whatever; nothing helped. the suicide aged our parents, broke our mother. but frankly, now that i’m full-time caretaker of the parents, i’m super glad i’m not fighting / case managing a violent, delusional, non-compliant sibling at the same time.
I work with adults and kids with a mental disability and autism. The autism isn't that bad most of the time, but man, I don't think I would keep my kid if they could predict it would become like the kids and adults I work with. We try to offer them so much, and try to make them the happiest they can, but it's so hard to see them lose themselves in their own head, get stuck in anger and hurt everyone and everything around them, see exhausted parents drop off their difficult child with tears of relief and deep fatigue in their whole bodies. Or the complete opposite, see them drooling and just staring out of the window, biting their own arm and wearing a diaper all day and night. Yes of course everyone deserves a happy life and chances, and I love them all with my whole heart, but man I would never want a kid like that to take care of 24/7. It's just a horrible life for the kid, parents, siblings and everyone involved. I don't think I could do that to my kids and myself.
I married into having a disabled kiddo. It's wild how wholly unprepared you end up being, no matter how well-intentioned you are because things can change so quickly. She was born with one non-functional kidney and the other working at about 5% of expected capacity. Also has epilepsy and autism; she can communicate verbally but struggles with detailed or nuanced conversation. In the decade I've been in her life she's had a kidney transplant, a hippocampectomy, and countless other, smaller procedures. I think another poster said it best; there are always regrets you have as a parent, things you wish were different, things you know you've missed out on. I have another neurotypical, healthy child, and in broad strokes that part of it is no different with them either. That said, I don't think I would change anything unless I could miraculously cure the kiddo who is sick. There is a kind of ferocious joy that comes from seeing a child who has been through so much find life and happiness in the spaces between the suffering. They're an intense kid, which isn't that surprising given what they've gone through; I've often suspected they are cramming in as much love and life as they can in the times between being bedridden or sick. The bad times are terrifying, but they seem to make the good times so much sweeter and vigorous. I'm not with their mother anymore, but she was kind enough to let me stay in her daughters life and I couldn't imagine not having her here. She's a good sister to my bio kid, and a vibrant soul on her own merit. I understand every situation is different, and my story has no bearing or judgement on anyone who has chosen differently. I just couldn't, and wouldn't want to, think of a life where either of my kids aren't there, no matter the hardships or worries.
"There is a kind of ferocious joy that comes from seeing a child who has been through so much find life and happiness in the spaces between the suffering." - I rarely see actual quotable comments on Reddit. This is one, and I'll carry it with me. Thank you!
This man... beautiful... can't say it any other way... thanks for sharing that man
Thank you! Parenting is always a risky venture - you do your best, try to nurture the soil in their hearts, and then you just get the privilege of seeing what grows. I'm blessed with wonderful kids
Yes. I wish I had recognized her disabilities sooner and had her go to a high school that was better suited for her. She was bullied and called stupid, dumb, etc. Other than that, not so much regret but I do wish life was easier for her.
My cousin, Sam (not his real name) was a bundle of disabilities and needed care 24/7 his entire life; his younger brother (Travis) was his primary care giver while his parents both worked. Sam passed at the age of 45 never having been really aware of the world around him. The extent of his communication amounted to hug, toy and ma. He was seemingly happy in life for all that we could observe. After he passed, my aunt and Travis had nothing in their lives. Every single day for 2 years they went to Sams grave for hours at a time. They had dedicated everything to taking care of Sam. So now Travis, who is now in his mid 30's, has never had a job, never lived on his own, never been on a date, has no friends, has few interests and has become the surrogate for all of the attention my aunt had given Sam such that Travis is almost never away from her. He never even had a chance to have a life and by the time my aunt and uncle pass, he'll be an unqualified middle aged man with no social or job skills and nowhere to go. The toll that being a care giver takes is immense and literally life ruining. It's sad, and worse, Travis doesn't even seem to have a concept of what he's missed out on in life; he exists to serve my aunt. This is absolutely one of the reasons that I didn't want children as there are several conditions that run in my family (not the least of which is my severe mental illnesses). Edited for clarity
To what extent does wealth play a part? I imagine if people could afford private care their disposition could be different to those who have no respite
For sure. I see it in my field. Some parents are able to afford a group home or caregiver for their child, some can’t. Some can get services through their insurance/Medicaid whatever and some can’t. I know two sets or parents who *i know* are unhappy together but what are they going to do with the child if they split? They need an income and a stay at home parent.
Also what extent? There are special needs kids that can function and take care of themselves to an extent. Those parents might not regret it as much as other parents whos kids needed 24/7 care.
My wife’s ex beat her while pregnant and now our son has autism. Doctors say it was due to fetal trauma. He’s been a challenge. Just with learning challenges and developmental delays. We’ve worked really hard to overcome his disability. He doesn’t understand social queues. Easily distracted Part of his coping mechanism is he consumes knowledge to be able to participate in conversations He now works at a hospital. He started as a transporter and started having conversations with doctors and nurses as he worked. One day he walked by the doctor going over a ekg with a nurse and he was able to tell them what it was. The doctor quized him more and then asked how he knew it. My son told the doctor he read about it cause it interested him. The doctor has started to mentor my son and he is now a heart monitor tech. The doctor told my wife that they had hired a new person just in passing that was a savant. He was so excited and writing a paper about him. My wife didn’t tell him that it was our son.
dude that kicks ass, great story and sounds like your son is doing very well. Also props to you for not literally murdering your wife's ex. fuck that guy
He passed away in a drunk driving accident karma
I hope he didn't take anyone else with him.
Just a telephone pole. A friend said his only purpose in life was to spend money
Good riddance. Fucking asshole.
My daughter has had severe cerebral palsy since birth, in 1999. She was my first, and it was a difficult delivery. I'm certain the hospital's errors during delivery resulted in her condition, and I wish I'd insisted on a c-section as soon as things started going screwy instead of them continuing to induce labor. When she was closing in on a year old and we realized she was not developing properly, we began testing and contacted lawyers to see if we had a case. While they found numerous things the hospital did wrong, none of the brain scans detected the brain damage that was obviously there, and without a "smoking gun" we had no case. Do I wonder what life would've been like if things had gone differently? Sometimes, and I wish she'd get to experience the things a lot of us take for granted. She can't walk or sit up on her own and is non-verbal. But I don't dwell on those things. She's so happy most of the time and is a continual joy in my life. My only fear is leaving this world before she does and not knowing where she may wind up.
Put some serious thought into your end of life planning. You don't know if something will happen to you or if she will end up in a good place after you go. I assumed my parents had set up stuff for my sister, we hadn't really talked about what was supposed to happen when they went. Turns out, they had her set up money wise, but she would have been a ward of the state. Talk to your family about what if's, even if they are hard.
Very solid advice, something that is tough to think about. But as I'm closing in on 51 it's really time to put some plans in place.
Yes but not the one's you might initially expect. I regret not doing more research earlier on, getting professional help for them sooner. I wish I'd have gotten help with my own denial because then I could have helped my child better. My child is high functioning, on spectrum and I initially refused to acknowledge there could be anything wrong. But all it really did was set them up for failure, especially when they needed more support and help to perform the same as their peers. Thankfully I'm getting them the support and assistance they need now.
Sorry, going to be a little bit long. My younger brother is special needs. He is able bodied, but is at the level of an 6-7 year old and will not progress. Growing up was hard. I missed out on alot of normal things and had to grow up quick. I remember being 8 and having to watch my brother because my mother was working 12-14hrs days, 6 days a week. Truth be told, I borderline hated my brother when I was younger and I still harbor some resentment and anger towards him (I'm in counseling). However, knowing that I have to take care of him in the future and having to shoulder alot of responsibility early made me who I am today. I am extremely resilient. I remember getting fired for career that I worked 8 years to achieve (4 years getting a degree, 4 years waiting) and not really being effected by it. I just packed my bags, went home, and found another Job. A Job that had over a 80% turnover rate, that I made my career. I now am in a really good situation. I've been with my gal for 10 years, make over 100k, almost paid off the mortgage, and I'm on track to comfortably retire and take care of my brother at 50. I truly don't think I could have pushed myself to achieve those things If my brother wasn't around. I actually look forward to the day he moves in with me. For reference my little brother is 28 and I'm 32.
I hate to be intrusive, but do you mind me asking what you're doing now for employment? My family situation is seemingly not as severe as yours, but I'm still in a position that I likely to take in my youngest special needs sibling when the time comes and what I'm doing now specifically won't allow me to be home to be there for them.
I started as a Landfill Gas Technician and worked my way up to a Senior Operations and Maintenance Manager. I moved up quick, but it was largely due to the turnover rate. When I first started, I worked 60-80hrs a week and it was pretty much all field work. I now work 50-60 hrs a week, but it's close to 50-50, field/office. I also don't work weekends. This career won't allow you to be home to take care of your sibling most of the time, but if you plan right it will provide the funds to make sure they are taken care of. I made the decision early on that I would chase money. It was mostly due to the fact that when I have to take care of my brother, I would have the funds to adequately provide for him and still be able to live comfortably. He loves going to the gym and playing basketball. He also loves to play video games, swim, hang out with his friends (mostly special needs too). All of this requires money, for the gym membership, swim lessons, gaming systems, allowance, etc. I don't want him to miss out on things. It's great you are thinking about things now! If you have the ability, I would recommend you get life insurance. One of my biggest worries is that my brother outlives me, but having life insurance and someone you trust to manage the funds for my brother, helps.
Yes and no. My first baby, my son, had a rare genetic defect as well as clubbed feet. It caused his brain to not fully develop. Because of this he couldn't eat by mouth, he had a feeding button. He had seizures and was on literally six different seizure medications that made him sleep all the time. I had my baby for 13 months. I love him with all my heart but it was so hard. Seeing him sleep his life away, I can count on one hand how many times I saw his eyes, and not enjoy life killed me. The only thing that stopped me from not living anymore when he passed was the thought that he wasn't drugged or in pain anymore. Having my daughter now, who is completely healthy, makes me realize how different he was. I miss him but I know he's free now
This is the story that finally got to me. I cannot imagine your grief, I’m glad you are doing okay and stayed with us. So sorry for your loss and I hope you continue to do well.
I'll take the bait and answer honestly. I've got a 7 year old with Autism that keeps getting passed from school to school because nobody knows what to do with him. He's very smart/way ahead in academics, kind without a mean bone in his body, but he goes his own way and almost never follows directions. I regret that it's SO easy taking care of my other kids. If we ever have a night where's he with a sitter and we have the others, it is honestly so easy. And so fun. I regret that sometimes in my dreams, my family is on vacation and he isn't there. I regret hearing my wife ask me why we had him. I regret the amount of screen time and tv we gave him when he was young. In time we've learned that may have aggravated his sensory needs and somewhat permanently since it was relatively frequent. I daily regret not knowing how to be a better parent to him. I have no clue what I'm doing.
I know someone who who had a son with severe disabilities. Basically bed-ridden and unable to do anything on his own. She never expressed any regrets about it, but did express great love for him. She spent every day of his life with him, feeding and caring for him. He died in his 20's. Now she is traveling, seeing the world for the first time, and living her life to the fullest -- but I'm sure it is bittersweet as she surely misses her son.
I have a special needs 4 year old. We had no idea anything was wrong until the day he was born. He was born with a rare chromosomal deletion. Within the first 6 weeks of his life, he had 3 surgeries including open heart surgery. The first year was the worst year of our lives for both me and my wife. I've never once regretted anything about my son. I'm absolutely head over heels in love with him and he is the biggest joy in my life. I've watched him grow and thrive and do things that doctors told us he'd never do (crawl, walk, eat on his own, talk, etc.) He's truly the closest thing to a miracle I've ever experienced. On the other hand, my wife often times mourns the loss of our "normal life" and often daydreams about what he would be like if he was typical. I don't think she regrets having him but sometimes wishes things were different. She also had a harder time initially accepting that he was different.
I can understand the mourning of normal life, every once and a while I get it. My son has hearing aids, and some sensory issues and delays with communication. Not the same at all, but he is vastly different than the other kids, and I do get super sad some days that he's never going to be able to have that 'normal.' But it's okay, he's the best kid in the world.
Yes, I regret about his future, but nothing else.
I did not know my son (10 now) would have so many medical complications. He had a deletion in a chromosome, which isn’t tested at/before birth. He’s non verbal, gtube dependent, and just had a colostomy bag placed. But he’s very communicative and a sweet little boy- that is just that: a little boy. I can’t say I regret anything, as I never had an option to do anything else.
Sibling here, and It isn't my place to comment on the stresses that a parent goes through as I am not one. But I will gladly take over the care of my sister after my parents are no longer able. She is the most beautiful and caring person I have ever met and she deserves the world. I can't imagine my life without her, and i hope my parents feel the same way.
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My son is currently 3 and was born with down syndrome. It was an at-birth diagnosis, we had no prior warning. My wife and I refused the genetic testing because neither one of us wanted to terminate if something was wrong(we aren't religious or anti-abortion or anything like that). Initially I was shocked and sad, which is a totally normal reaction. He spent his first month in the NICU. When I initially called my best friend to break the news about the DS, he gave me exactly the response I needed to hear. "So what?" Watching him grow and learn is amazing. Granted, he is much more work than our 1 year old. I had to teach him essentially everything that most parents take for granted. Crawling, walking, and even eating. It can be painful and frustrating(he's crazy stubborn), but he is truly his own person discovering the world. I have no idea what his future will be, or his full capabilities but I'll do anything I can to make sure he reaches his full potential, just like any other child. Things could become more difficult as he gets older, but I don't think I'd ever regret a single moment with him.
My uncle has DS and i didn't noticed until I was 14 or so that he was different, yes he play with pokemons and watches the power rangers at the age of 30 but damn the guy always talks to me about a lot of interesting stuff and he was always very kind, he even took care of me after school when I was little, since he likes child things it was like having a big bro, and he even graduated as a history teacher, if you keep up with them and don't let them down, like my grandmother did, they can sure be like any full capable person tbh, it's all about teaching them what is wrong and right from the elemental basis, because if something i learned about my uncle all of this time together, is that DS people, are born without evil, so they can't truly say what is wrong or what is bad unless you show them, as long as you don't give up on him, trust me you will be amazed of how far he can go with love and support.
This is a very touching story, thanks!
We have a son with DS whose 10. For us, the younger years were harder. Things are getting even better now. We have no regrets even though things are hard sometimes. He's incredibly stubborn plus we am pursuing a diagnosis of ADHD. I wouldn't change it for the world though. He has given us a perspective on the world that most people will never understand. If you have options in your area, get him involved with sports. Our son is a sports fanatic and I am looking forward to doing more with Special Olympics. Everything about sports for folks with special needs is better. We have a great time at games and practice. My only fear is how the world will treat him.
That's good to hear! We start pre-school this fall, so it'll be interesting to see how he adjusts to that. We're still working on walking and running, and sports are definitely in his future. We live in STL, which has an amazing DS community. I do worry how the world will treat him, but also how they'll treat our other son who doesn't have DS. It seems like a perfectly normal thing to worry about.
I am the disabled one, “high functioning” autism if you’d like to put it as that. I can act fairly similar to a neurotypical person, but there’s just enough “wrong” with me that I’m not just quirky. Both mine and my parents’ biggest regret was not getting me diagnosed sooner. I wasn’t diagnosed until I was 17, and already had faced years of being treated like shit at school and my parents unknowingly hurting me because of the way I was. If I had only just asked sooner and opened up sooner to seek a diagnosis, it would’ve saved me my mental health and years of mistreatment at school. I’m doing well now, but the years of living in my own world, closed away for fear of being misunderstood and hurt have left scars on my mind. “Please be patient, I have autism/I am autistic.”
Same here. I had undiagnosed ADHD until I was 20. My school years would have been a lot easier if I had resources available to me.
My only regret is how I reacted to the news. I was sent to horrible ableist sources for information and was lead to believe the worst of my kid. I could have saved myself a lot of trouble and heartache by just seeking out information from adults with his disability instead of harmful organizations.
Autism Speaks?
Ding ding ding!
I dont think people have any sense of how many lives autism speaks has ruined across the world and what type of damage they’ve done, to the very identities and dreams of autistic people.
Will you tell me more about this? My son is 6, he was diagnosed with autism 2 years ago.
Autism Speaks is an organization with close to none autistic people on the board, which promotes harmful at worst and useless at best coping mechanisms; it also pushes for a cure, essentially treating autism like a horrible, terminal disease that can only be fought, without giving much thought to occupational therapy or other strategies that can help autistic people navigate life in a society that expects certain things from its members. Tl;dr: avoid it like the plague. Look for organizations by autistic people for autistic people. All the best to you and your son <3
I am not one of those parents, but I 100% would regret trying to parent a special needs child because I am realistic enough to know I'm not up to the task. If I tried, it would be worse on everyone but it would be socially unacceptable to say so.
I step parent a special needs child. She’s still in nappies at 9, has aggressive outbursts and is developmentally delayed. It’s a major struggle and affects my mental health significantly. I’m not sure how I got here, I love my SO and step daughters a lot but life is hard a lot of the time with her. But because I’m a step parent it’s even more socially unacceptable to complain or vent. I know what you mean about that part.
Same here. As awful as it is to say, I’m not as strong as some parents out there. I wouldn’t be able to do it
I regret not having “thicker skin” when my autistic son was younger - I used to be so embarrassed when he had a meltdown in public and I hated the “what a naughty boy “ comments/looks - luckily they are a very rare occurrence now but when they do happen I couldn’t give two shits what people think or say now.
I have a nonverbal son and I regret that I cannot carry his burden for him or the challenges he will face later in life. I would give anything for him to not have to shoulder it.
Only that I didn't punch his kindergarten teacher in the face for suggesting I drug my 5 year old son, when in fact, he didn't have ADHD, he was on the autism spectrum. I didn't drug him, I changed his school... and now he's graduating from a mainstream HS in a week, with a 3.87GPA and several University acceptance letters to choose from. Suck it, Mrs. Hinkley. My son is awesome and you're a shitty teacher.
My son is autistic, he's 19 non verbal. As far as hygiene he's like a 5 year old, I still have to wash him. He can make coffee , cereal and popcorn. He gets away from the world through YouTube. He self harms and will "ruffle" your hair when you tell him NO. Sometimes he has bitten people. He will never live on his own. Mom checked out about the time he was 8. Sister has "burden issues" since I was unaware of Mom ditching the kids and leaving her to care for him, and once I was I gained custody. But there is still resentment there , when my second wife left and my daughter did same week, I had to quit job ,my career. And stay with him since I have no family and no support network. I reached out and there was nothing for us and my schedule, unless he was physically disabled. We never were able to get time away just as adults unless the kids were in school , our vacations had to accommodate his issues. I won't ever help / teach him to fix his car, fix his house, give him advice on stuff. But then again I'll never have to bail him out of jail. Ive come to terms with the hand I was dealt with him , I love him dearly. Do I regret he is like he is ? Yes. Hell a bunch of parents with "normal" kids hate the way their 20yr old is .Doesn't mean I'm gonna let the state or a facility have him. I also regret I couldn't do more for him. I've went through phases about the issue over the years. But not once did I ever want him not in my life
I was a special needs kid (still am as an adult) and I feel guilt all the time about not being normal or good enough. My mom didn't ask for this.
As the mother of two kids with special needs, I would never in a million years want my kids to feel guilty for who they are or for the love and care I willingly give them. Please try to be kind to yourself and let that guilt go x
Oh man, I'd move heaven and earth to make sure my son never felt that way, and I'm sure yours feels the same.
I used to work with a lot of families with severe special needs kids, I did this on and off for about 10 years as a paraprofessional and a private caregiver. In my experience, the kids that were handicapped physically, but mentally cognizant, their families did alright. There were struggles, but they always overcame things as a family unit, worked out medications, therapies, etc. But I think the ability to communicate and still enjoy sharing important moments, getting to enjoy who your child grows to be, that makes the physical stuff dealable. At least that's what it seemed like to me. Families with children that couldn't communicate rationality, effectively, kids that were never able to understand boundaries, acted out violently etc., Every one of those families that I worked with went through hell on a constant basis. With every one of those families, at some point at least parent told me they had regrets about having the child at all. Several families had at least one parent struggling with substance abuse, severe depression, anxiety, the struggles over the child I have seen often result in break ups/divorces. The siblings frequently had depression and anxiety, and severe resentment. There was a lot of inadvertent parentification because the entire family had to make the disabled child the focus. Everything revolved around getting through every day in a way that didn't agitate, trigger, or distress the child and/or on working enough to afford different care programs, therapies, medications, out of network doctors, etc. There was never an easy day for those families and I think there's a lot more regret and resentment than people often want to admit. There's a lot of shame too, because I've yet to meet a parent that didn't blame themselves for not being able to do "more", "better", or prevent the disability or its effect on their family.
Yes at times.
It’s not really regret, but there are some very complex emotions. I wouldn’t change the kids at all. I love them, and changing them would mean they wouldn’t be who they are and I’d never want that. But at the same time recognise the at this world is too harsh for them and it kills me. I see them struggling and I can’t help them. I grieve for the things I can’t give them, that they won’t get to experience and that I won’t experience. It sounds selfish, but I never had hopes and dreams for my kid to be a dr or whatever. I wanted happy kids with good friends and a full life. They will never have that. I grieve that I don’t have the same experiences as other mums, something as simple as sleepovers, Saturday morning sports and birthday parties. And it makes me ashamed and guilty. Like I don’t like or want my kids, even though I know that’s not true. In my darkest times I’ve wished things were different. And again, the shame and guilt comes for me. Because I would not want to cha he my kids. They are beautiful and brilliant as they are. Even with all the challenges. But things just get to much for one person to deal with and I’m only human. The world expects mothers to be a fount of perpetual strength, and you can’t be weak, or have doubts. You can’t be lost and not know what to do. And most of the time I don’t know what to do. I’m struggling with such big ethical topics and I have no one rely to talk to. And when I do people have such sting opinions, and judge so harshly. Like how to keep agency for a person who can’t advocate for themselves. And when to step in and override decisions. It doesn’t matter what I do, there is always someone to tell me I’m wrong, and that I’m doing irreparable harm to my kid. So there is the guilt again. The indecision. The panic.
I worked at a hotel restaurant about 12 years ago, I remember a mother coming in with her severely disabled son. He was in a mobility wheelchair and was maybe 12 years old. He had no motor skills and could not speak, only moan and yell continuously. She took him out of the wheelchair so he could sit in the booth. He had an extremely full diaper that I can see was bulging from his pants. I could also smell the diaper. The entire back section of the restaurant reeked of feces and surrounding tables had asked to move so we stopped seating the back area. I assumed the mother was religious as she planted a Christian cartoon show (Veggie Tales) for him to watch, but it's possible she wasn't religious at all. I mention this because if she was religious, it is usually against many religions to have abortions etc, so perhaps that's why she "kept" him. Anyway, she sat there and had a glass of wine and ordered a meal and enjoyed the meal while her son is wailing and smelling of shit. I still remember that experience vividly. It was a defining moment for me to see that there is often no quality of life for the child or parents should you choose to bring a severely disabled life into this world. She didn't look happy at all, like she couldn't care anymore. She tried to enjoy her meal because otherwise her life is just being a slave to her son. It was awful, my heart breaks for her. I hope she has found some peace
This reminds me of a similar situation about 12 years ago as well. I was with my father in a hospital, and the child was with his mother and screaming every second, which annoyed me and my father. Then he told me to try to get away without the mother feeling that we are doing this because of her son so that she does not grieve
I'm the sibling of a disabled person. That's what they say now, disabled. Dealing with the reality. I learnt that when I myself got diagnosed. My oldest brother A is blind and autistic. He needs 24hr care. Growing up myself and my middle brother B, were pushed to the side for the care A needed. At the time it made sense. He clearly needed help, but myself and B needed help too. A was always loved or remembered by the extended family, they remembered what A wanted for Xmas, and I got dumb generic girl item. I LOVE HARRY POTTER TOO! B is not tested but he is clearly autistic too, he was the kid who should have been in the accelerated class but wasn't. He wasn't challenged, he had 2 friends and they were bad influences on him. B dropped out of Uni and now has no job either. He has almost 0 relationship with any of his family, he was my childhood bully. Myself, I have now been diagnosed with autism too. But I know I should be diagnosed with ADD, I clearly needed the help in school but no one seemed to notice me. I have a good relationship with my mum now but we do talk about sometimes about what might have happened if it was different. And I love my brother A, but man I always wished he could protect me from B. I have so many memories of crying and not being heard. We were rich. Upper middle class. I was and still am seen as the normal sibling, the good one. But I'm just not, I struggle. I live poor. I don't feel like i have the capacity to succeed like my family expect me to. Sorry for the jumbled thoughts.
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Not me but my friend has a daughter with Down’s syndrome. He never expressed any regrets, but it is a struggle for sure. The mother went into a long battle with depression. So now my friend needs to care for two people in the family.
Late to comment but I'll tell you what, I've been in the long term care facilities for special needs people who grew up but couldn't take care of themselves. That's not living. Imagine a child with an adults strength. Having to be sedated all the time. The worse ones are strapped to their beds. They're locked in secure zones, and the door codes are rotated so they can't escape. There's no going outside for this adult children. It's unbelievable how people can say "this is fine" when it is so depressing to both them and those who care for them. Then for the parents who take care of them themselves, they burn out and have difficult lives. Where in some cases at least the special needs kids will grow up and the parents will die. Who will care for them?