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What / when do I tell him?

Submitted by an LD OnLine user on

I have an 8 year old boy in regular ed 2nd grade. He has always struggled with mild, somewhat elusive delays in speech and OT and has received services through school. I had him evaluated privately and discovered, finally, that he has a severe Visual Processing Deficit and was diagnosed with something called Gerstmann’s Syndrome, which includes learning disabilities like dysgraphia and disorder of written expression.

My question is, do I sit down and explain to him that he has a learning disability? If so, how? Is he of the appropriate age that he can begin to understand this about himself? My feeling is that if he begins to understand and accept this, the sooner he can realize he just learns differently and can advocate for what he needs, but I don’t really know how to approach this. I would appreciate any advice. Also, how to handle this with his 10-year old brother (who is GATE) who is already questioning what’s going on with his brother? Thanks in advance!

Submitted by Mandi on Sat, 12/18/2010 - 10:22 AM

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You tell him immediately. You think he doesn’t get that something is going on? He may not know what. But he knows something isn’t normal. This is his life his responsibility and his cross to carry till he dies of old age. The sooner he learns about it the sooner he is empowered to learn and create strategies in his life to deal with it

Also if you are not the one that tells him other kids will tell him. They will notice too something isn’t normal. And he will pay for being abnormal cuz kids are cruel. Atleast by telling him he knows it is coming.

If you don’t tell him, he will probably never forgive you for keeping something that important to his life from him also. There will be a loss of trust and respect i should expect.

You don’t get to keep secrets from others that are about them. That is just not ok.

When you tell him, You sit him down, and you do NOT call it disability. You call it a “difference”. He has different learning needs than others. Assure him you will meet those different needs and that you will fight for his getting his needs met educationally no matter how long or how hard or how much it takes and costs. Tell him he is a really smart little boy and the school is just too stupid to know how to teach to him because he is so smart and his mind works differently, but that you are going to find something that will help him. You tell him this may be a challenge for him for life and you tell him he is equal to the challenge because you are raising him to be equal to any challenge. There is a big world out there and one day he will have to advocate for his own needs. But for now he needs to just watch you doing it and start to slowly learn how. You tell him too that you will always be there to help him with all that till he can do it all by himself. Then, you explain in small words to him just what his LD entails in as child friendly a way as possible so that he knows perhaps not in detail… but he has some idea of what is going on. Less scary if you know what is going on.

That is what you do.

Submitted by geodob2 on Sat, 12/18/2010 - 11:27 AM

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Hi Momtwoboys and welcome here,
I was very interested to read your post, as I run a forum for the maths disorder Dyscalculia. Where Dyscalculia shares many of the symptoms of Gerstmann’s Syndrome. Where both stem from Parietal Lobe problems. Though with Gerstmann’s, it is more often in the ‘associative region’, that connects the Parietal and Occipito-temporal lobe. So that it also effects verbal and written expression.
Where the ‘constructional apraxia’ difficulties, extend into speech.
Though I read your other post, where the school wont honor your outside evaluation, stating that it is a medical, not an educational report?
But, it might be a case of the report not providing them with information that they can understand?
Where it really needs to be explained at a more practical level for them. Which also needs to be able to be defined, under a number of boxes, to be ticked on their standard form?
But coming back to ‘telling him’?
It’s not so much about telling him that has a learning disability, or difference?
But with helping him to understand what this learning difference actually is, and how it effects his thinking and learning.
Where ‘constructional apraxia’ is a key term, in understanding its effect on, visual, spacial and auditory thinking.
Also with defining the types of help and support that he needs.

Submitted by momtwoboys on Sat, 12/18/2010 - 5:18 PM

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[quote=Mandi]
[i]If you don’t tell him, he will probably never forgive you for keeping something that important to his life from him also. There will be a loss of trust and respect i should expect.

You don’t get to keep secrets from others that are about them. That is just not ok.
[/i]

Hi Mandi,
thanks for your reply. I just want to point out that I’ve not been keeping anything from my son. We only found out about his diagnosis a week ago. I have every intention of speaking with him - that’s why I came on here, looking for advice (not judgment) on how to approach it. While I agree that the school system is simply not designed to address most kinds of learning differences and feel strongly that is a cruelty to our kids, as a teacher myself I do not agree with telling him the school is “too stupid” to help him. I don’t really feel that’s teaching him to advocate for himself as much as it’s teaching him to put somebody down the way he has been put down.

Anyway, I do appreciate your thoughts and suggestions and will take them into consideration. Thank you!

Submitted by Mandi on Sat, 12/18/2010 - 6:31 PM

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No i understand you need to find a way to tell him. But you do need to tell him and i should think you would not want to be in the know for too much more time than he is.

Just use age apropriate language for him words he knows and understands.

I strongly advise explaining he is different rather than teaching him he is disabled. Because the connotation is very different and it colors his life in totally different ways. Infact, i would forbid everyone and anyone from refering my child as learning disabled because i wouldn’t want them to take away the lesson that they are some how less than others. Or that they are broken. That was really what i was trying to push home to you.

I am with you it is a cruelty to our kids. But even more cruel is attaching words like “disabled” to them when these horrible words follow them for life. Different has a very different connotation. I am really glad you chose that one in your response post. Sorry if i seemed judgemental i wasn’t trying to be.

Please understand i come from a different time, before they had any sense at all in the industry that is the LD industry. And yes it is an industry. When i was little, the specialists would talk about me in large clinical words to my mother as if i was not in the room. It always ripped me apart because they were discussing the evidence that showed i had the vocabulary of a college educated 40 year old at age 5 yet they talked about me like i wasn’t there like i wouldn’t understand any of it. The fact was, i understood all of it with ease. I was brought up in a weird environment surrounded by harvard and MIT grad students and professors. Not a 1 of them knew or cared how they should talk to a child and so i learned adult language very very early. It was always very annoying to me to have this quack with the evidence in his hand stating i understood him perfectly talking over my head to my mother about me like i wasn’t there and responding with condecension to my questions about my dyslexia. I simply want to make sure, that your son is protected from such experiences and that he is treated like part of the team to get him through life as opposed to being treated like a dog in the dog bed in the corner of the dining room while his people were sitting at the table having a fancy dinner party. I am not saying youa re doing that or that you would do that. I just wanted to speak up to make sure your son doesn’t have this experience that i had when i was young. I am very sorry if i came across as judging you. Just trying to protect your kid.

Submitted by sara26 on Mon, 12/20/2010 - 8:22 PM

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it may be very difficult to tell your child but i am sure he knows that you love him! Kids understand more then we gave them credit for!!

Good luck!! And be strong!! :)

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