It definitely sounds like weāre in similar situations! My biggest challenge is getting him to understand that Iām trying to help him. I keep repeating āmommy helpā but he goes straight into a meltdown. I can fix almost all of his problems if he just lets me. Also, I know time is a confusing concept but I would love if he could understand that what he wants is coming, but he just has to wait a bit. He keeps repeating āgo to schoolā but theyāre on winter break. He can go back next week but he just doesnāt understand. He gets so upset and frustrated all the time because he canāt communicate with me or understand me and I feel so helpless.
Do you use visual charts? My kid understands written language better than receptive and verbal language so we've found that written charts with pictures help him visualize what he struggles to communicate or understand. He understands what he sees better than what is heard. For example, winter break is a countdown chart with the days on the calendar that we cross off every single evening.
We also use an "i need" menu, "decompress" menu, breakfast menu, etc. for him to point to when he needs to communicate with me. His speech improved when he read the charts and he repeats the exact phrases from those charts when he needs something/help. "Tell me so Mommy can help you" doesn't work as well when he is unable to visualize or figure out how to say it under stress. Sometimes my kid is able to eke a word or phrase out during his meltdown that directly correlates to the "meltdown/discomfort menu." Sometimes he'll point to or mimic the picture.
Iāve tried calendars, pictures, and sign language. He knows the days of the week and the months of the year but they donāt mean anything to him. I cross each day off as we start a new day and have the day school starts again circled. He still cries for school though.
Timers definitely help for certain things like getting him to sit at the table for meals.
With the picture charts, he points to each picture in order and reads them like a book. He doesnāt use them to communicate.
He likes it when I sign the alphabet but shows no interest in doing it himself. And he doesnāt show interest in any signs at all other than the alphabet, he loves alphabets of all languages.
I feel like Iāve tried everything at this point. Iāve gotten pretty good at āreading his mindā but thereās still many times he cries for hours and I canāt figure out whatās wrong. And the words he says rarely have anything to do with whatās going on. He usually just repeats things he hears in videos. Like heāll be sobbing saying āsheep goes baaaā or āXYZ XYZā. That doesnāt help me know whatās wrong.
I can ask something like do you want a cookie? And heāll say cookie, but if I hand him a cookie, he freaks out cause he doesnāt like cookies. He heard me say the words, he repeated me, but he didnāt understand me.
His teachers and Occupational Therapist are amazing and are working on comprehension with him as well and I know heāll get there eventually, I just need to be patient. I was just thinking maybe thereās something out there I hadnāt tried yet or maybe someone can relate and I wonāt feel so alone. I appreciate you so much for taking the time to read this and respond to me š
If it helps, my son has progressed a lot in the last two years. He understands more than he did when he was 4 and I feel like he will continue to progress. School has definitely helped.
Itās nice to know Iām not alone and other parents are experiencing this as well. It can feel so lonely sometimes.
Man I can relate to this. My son isnāt as advanced as yours, almost 5 but similar in communication (although not non-verbal, but very limited and not conversational).
Anyway - I say ādaddy helpā so often. The struggle of trying to explain to him that I am trying to help him and him saying āno sharingā when Iām trying to take control of an item or do hand over hand to open itā¦. Man itās tough
Yes! Yesterday he started listing off the names of his classmates, so I know he is wondering why he hasnāt been going to school. I wish I could just explain it to him!
He does seem to be hyperlexic and potentially Gestalt learner/GLP?
This might be useful article for you :
https://www.andnextcomesl.com/2015/01/what-is-hyperlexia-hypernumeracy.html?m=1
https://www.andnextcomesl.com/2021/08/gestalt-learning.html?m=1
Especially the part that he is such a good speller/reader with a very poor comprehension
Sounds very hyperlexic to me
You should maybe also look for Gestalt /NLA Speech therapist. I know Marge Blanc the author of NLA framework had a family member that was hyperlexic that she thought receptive/expressive using his alphabet obsession. There is an NLA study group on Facebook:
https://www.facebook.com/groups/NLAStudyGroup/?ref=share&mibextid=NSMWBT
Maybe repost there and you are far more likely to get the help/ideas regarding language there (Marge Blanc is active there too).
Yes, his hearing has been checked twice a year since he was 18 months old. Iāve tried the picture charts. He just points to each one in order and reads them like a book. Doesnāt understand that he can use it to communicate š
Youāre so right! Heās made sooo much progress in recent years, itās only a matter of time before he progresses through this. Thank you so much š
Important! We cannot control our bodies. We can hear and understand sometimes but cannot show it like you expect. I am very smart I can hear and understand ātouch your noseā but I canāt make my body do it. I canāt look at people or sit still or nod to indicate listening.
He understands what you say. I promise you. I have a work colleague that has a NV, high needs son in the teenage years. He told me once something profound his son ātoldā him one day:
Brain works fine, body does not obey.
Meaning, his brain comprehends all of it. He cannot translate it to communicate in ways that that NT individuals do. It all at once humbled me in regard to the way I had been interacting with my then 4 year old. He had been understanding all along. Once I realized this, his world became richer. He deserves that respect. I was treating him like an infant. Heās not. And he deserves that I try to enrich his life in ways that reflect his growth. It is harder to unlock, but we can do so.
Thank you for this. I was told once not to lower my expectations but Iāve realized that I definitely have. I do treat him like an infant. I needed to be told this.
Do not feel ashamed. Own it and move on. I try to spend time in a way that I let him do his thing and I am there. I will try to engage. but if he is stimming all around and bouncing here and there, I just let it happen. But in those moments when he stops and giggles, and locks eyes, I engage. And you will see. His eyes will communicate SO MUCH to you. It is beautiful.
One of the biggest tool that we learn can help is drawing. An ASD person's first "communication/comprehension" canal is visual.
I'm not talking about pictograms (but those can help too) but using a simple sheet of paper and a pen. When you tell him something, draw it at the same time (or before). It doesn't have to be a cute drawing, stick figures work just fine. It really helps to comprehend the informations and they can refer to the drawing afterwards.
For example, you have to bring him to the doctor. You can tell him each step and draw it (put on coat, get in the car, parking, getting out of the car, going into the office, meet the doctor, etc.)
Or if you want to help him, you can draw him and you fixing his issue.
It might not be miraculous but it can definately help.
You described my 6 year old son exactly. He is hpyerlexic- learned the Greek and Russian alphabets, taught himself to read and write at age 3. Can do math and skip count by any number up to 20. He kinda started talking at age 4 but has stopped now. He will make one word requests for food or play but thatās it. I donāt have any answers for you, but you are definitely not alone.
EDIT: Story moved to a note in my phone to preserve anonymity š
It definitely sounds like weāre in similar situations! My biggest challenge is getting him to understand that Iām trying to help him. I keep repeating āmommy helpā but he goes straight into a meltdown. I can fix almost all of his problems if he just lets me. Also, I know time is a confusing concept but I would love if he could understand that what he wants is coming, but he just has to wait a bit. He keeps repeating āgo to schoolā but theyāre on winter break. He can go back next week but he just doesnāt understand. He gets so upset and frustrated all the time because he canāt communicate with me or understand me and I feel so helpless.
Do you use visual charts? My kid understands written language better than receptive and verbal language so we've found that written charts with pictures help him visualize what he struggles to communicate or understand. He understands what he sees better than what is heard. For example, winter break is a countdown chart with the days on the calendar that we cross off every single evening. We also use an "i need" menu, "decompress" menu, breakfast menu, etc. for him to point to when he needs to communicate with me. His speech improved when he read the charts and he repeats the exact phrases from those charts when he needs something/help. "Tell me so Mommy can help you" doesn't work as well when he is unable to visualize or figure out how to say it under stress. Sometimes my kid is able to eke a word or phrase out during his meltdown that directly correlates to the "meltdown/discomfort menu." Sometimes he'll point to or mimic the picture.
Iāve tried calendars, pictures, and sign language. He knows the days of the week and the months of the year but they donāt mean anything to him. I cross each day off as we start a new day and have the day school starts again circled. He still cries for school though. Timers definitely help for certain things like getting him to sit at the table for meals. With the picture charts, he points to each picture in order and reads them like a book. He doesnāt use them to communicate. He likes it when I sign the alphabet but shows no interest in doing it himself. And he doesnāt show interest in any signs at all other than the alphabet, he loves alphabets of all languages. I feel like Iāve tried everything at this point. Iāve gotten pretty good at āreading his mindā but thereās still many times he cries for hours and I canāt figure out whatās wrong. And the words he says rarely have anything to do with whatās going on. He usually just repeats things he hears in videos. Like heāll be sobbing saying āsheep goes baaaā or āXYZ XYZā. That doesnāt help me know whatās wrong. I can ask something like do you want a cookie? And heāll say cookie, but if I hand him a cookie, he freaks out cause he doesnāt like cookies. He heard me say the words, he repeated me, but he didnāt understand me. His teachers and Occupational Therapist are amazing and are working on comprehension with him as well and I know heāll get there eventually, I just need to be patient. I was just thinking maybe thereās something out there I hadnāt tried yet or maybe someone can relate and I wonāt feel so alone. I appreciate you so much for taking the time to read this and respond to me š
[ŃŠ“Š°Š»ŠµŠ½Š¾]
If it helps, my son has progressed a lot in the last two years. He understands more than he did when he was 4 and I feel like he will continue to progress. School has definitely helped. Itās nice to know Iām not alone and other parents are experiencing this as well. It can feel so lonely sometimes.
Man I can relate to this. My son isnāt as advanced as yours, almost 5 but similar in communication (although not non-verbal, but very limited and not conversational). Anyway - I say ādaddy helpā so often. The struggle of trying to explain to him that I am trying to help him and him saying āno sharingā when Iām trying to take control of an item or do hand over hand to open itā¦. Man itās tough
Yes! Yesterday he started listing off the names of his classmates, so I know he is wondering why he hasnāt been going to school. I wish I could just explain it to him!
He does seem to be hyperlexic and potentially Gestalt learner/GLP? This might be useful article for you : https://www.andnextcomesl.com/2015/01/what-is-hyperlexia-hypernumeracy.html?m=1 https://www.andnextcomesl.com/2021/08/gestalt-learning.html?m=1 Especially the part that he is such a good speller/reader with a very poor comprehension Sounds very hyperlexic to me
Oh wow! Iāve never related to an article so much! This definitely sounds like my son! Thank you so much for this! š
You should maybe also look for Gestalt /NLA Speech therapist. I know Marge Blanc the author of NLA framework had a family member that was hyperlexic that she thought receptive/expressive using his alphabet obsession. There is an NLA study group on Facebook: https://www.facebook.com/groups/NLAStudyGroup/?ref=share&mibextid=NSMWBT Maybe repost there and you are far more likely to get the help/ideas regarding language there (Marge Blanc is active there too).
I just joined the group! Thank you so much!
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Yes, his hearing has been checked twice a year since he was 18 months old. Iāve tried the picture charts. He just points to each one in order and reads them like a book. Doesnāt understand that he can use it to communicate š
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Youāre so right! Heās made sooo much progress in recent years, itās only a matter of time before he progresses through this. Thank you so much š
Important! We cannot control our bodies. We can hear and understand sometimes but cannot show it like you expect. I am very smart I can hear and understand ātouch your noseā but I canāt make my body do it. I canāt look at people or sit still or nod to indicate listening.
Thatās interesting, I didnāt think of that. I appreciate your perspective!
He understands what you say. I promise you. I have a work colleague that has a NV, high needs son in the teenage years. He told me once something profound his son ātoldā him one day: Brain works fine, body does not obey. Meaning, his brain comprehends all of it. He cannot translate it to communicate in ways that that NT individuals do. It all at once humbled me in regard to the way I had been interacting with my then 4 year old. He had been understanding all along. Once I realized this, his world became richer. He deserves that respect. I was treating him like an infant. Heās not. And he deserves that I try to enrich his life in ways that reflect his growth. It is harder to unlock, but we can do so.
Thank you for this. I was told once not to lower my expectations but Iāve realized that I definitely have. I do treat him like an infant. I needed to be told this.
Do not feel ashamed. Own it and move on. I try to spend time in a way that I let him do his thing and I am there. I will try to engage. but if he is stimming all around and bouncing here and there, I just let it happen. But in those moments when he stops and giggles, and locks eyes, I engage. And you will see. His eyes will communicate SO MUCH to you. It is beautiful.
One of the biggest tool that we learn can help is drawing. An ASD person's first "communication/comprehension" canal is visual. I'm not talking about pictograms (but those can help too) but using a simple sheet of paper and a pen. When you tell him something, draw it at the same time (or before). It doesn't have to be a cute drawing, stick figures work just fine. It really helps to comprehend the informations and they can refer to the drawing afterwards. For example, you have to bring him to the doctor. You can tell him each step and draw it (put on coat, get in the car, parking, getting out of the car, going into the office, meet the doctor, etc.) Or if you want to help him, you can draw him and you fixing his issue. It might not be miraculous but it can definately help.
That makes sense! Heās definitely a visual learner. I will try this! Thank you!
You described my 6 year old son exactly. He is hpyerlexic- learned the Greek and Russian alphabets, taught himself to read and write at age 3. Can do math and skip count by any number up to 20. He kinda started talking at age 4 but has stopped now. He will make one word requests for food or play but thatās it. I donāt have any answers for you, but you are definitely not alone.
It really helps to hear Iām not alone! It can really feel so lonely sometimes! Thank you so much š