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IM not a cure

Submitted by an LD OnLine user on

Hi everyone,
Our discussion below was getting kind of long….

I just wanted to say, and I totally agree w/socks here, none of these programs will cure our children of their disability. Interactive metronome (IM) has some solid evidence and research behind it. It certainly has been shown to help.

I know my husband is incredibly worried about me right now. He thinks I think that everything will be perfect after IM. I do pray for miracles, but things must be kept in perspective.

That being said….I rememeber a post some time back where the dad had listed therapies the child underwent: tonsils and adenoids removed for sleep apnea, FFW for auditory processing, IM for attention and motor, LindamoodBell V/V for expressive language, etc. A few years later the child was doing extremely well at a vey good school that never even suspected a problem.

Another post just recently on the NLD BB….gave similar advice: early diagnosis and interventions along the way and her 22 year old son just graduated from a good University w/ a degree in communications and history. Not that a degree defines success—but sounds very encouraging. Alot of us here fully expect and hope our children can go to college.

I guess we have to be careful not to overload w/lots of therapies….but there are so many good ones out there and I think there is a sequence to when they should be done.

Well, you probably all already know this….just wanted to share my thoughts.
Ciao,
Margo

Beth–have you noticed any of the stuff the learning specialist mentioned (see post below) in your son? Too soon to tell?

Submitted by Anonymous on Thu, 05/30/2002 - 11:59 PM

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As a parent who has done a lot of therapy with my son, I agree that there is no magic cure. I think for some kids with a single problem a single therapy can do a tremendous amount of good. For those of us with the fortune to have kids with more complicated profiles, we just keep picking away at the deficits. I do think there is an optimal sequence, although sometimes it is just dumb luck when we do things right. My son has made tremendous strides in the IM program, much more than the therapist ever dreamed, and I have no doubt it is because he had done other therapy first. In fact, he pretested a year and a half ago so poorly (he was in the worst category IM had) that the recommendation was to do other therapy first. It was then that we did Neuronet.

Still, to answer your question Margo, I am waiting to see if/how the results carry over to every day life. The only thing I have seen thus far (we are finishing week 4/5) is a sudden competence using silverware.

Beth

Submitted by Anonymous on Fri, 05/31/2002 - 12:53 AM

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The silverware thing is definitely a goal of ours. I hope you see lots more as time passes.

Submitted by Anonymous on Fri, 05/31/2002 - 2:44 AM

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MargoS wrote:
>
> The silverware thing is definitely a goal of ours. I hope you
> see lots more as time passes.

Gee, funny Beth mentioned it… and you responded- are we having the same simple wishes for our children?

Submitted by Anonymous on Fri, 05/31/2002 - 11:04 AM

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Margo,

It’s funny that would post this. This has been bugging me for a while.

Why do we always look at our children as defective? So much emphasis is put on what they can’t do.
I know soo many people who are ld with gifts only others wish they had,but yet no time in the day is left to allow a kid to build on these gifts.

Do not misunderstand me,I have done it,programs that at least were within my price range. I do not believe it is a bad thing,but…

Are we doing our kids a favor by allowing the school not to educate them,while we drive them around for hours after they have sat in school all day,just to try and remediate their deficits?

Priority has to be set. But what should our priority be? We don’t have time to do both.

I just want to know in myself when this ride is all over with,that I allowed my kid’s a chance to be a kid.

I know it is impossible to force the school to give my kid one on one remediation,I know it is. I know it is probably unfair to expect this to happen.
But how fair is it of me to make my kid sit there too?

I have little wishes for my children,using silverware would be helpful,gee,if I could learn to use them it would be helpful:-)
I guess in all this rambling I suppose I feel like being normal is over rated,and the quest for normalcy can be very expensive and unattainable.

When my kid looked at me one day and said,I want a break,no more OT,no more programs,I want to go home after school and ride my bike. It made me wonder….

Maybe homescooling isn’t such a bad idea. I don’t know the answers,I just know from my perspective having a life,means enjoying it.

Submitted by Anonymous on Fri, 05/31/2002 - 1:40 PM

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You know socks—you are right. Do you know what my son said to me during his exercises?–it was nearly dinner and we had just one more thing to go–I just wanted to finish—he wanted to eat-

“Mom” he said “it’s more important to live than to live perfectly”

I always wonder if what we are doing is right. I mean we found a very nice small private non ld school (15 kids per class) where probably 15% of the kids are LD. He is doing great there—but—the question is, is he keeping up, is he handling it? Now we are moving again–Looking for a new school in another new country. I visited 7 schools— and I kept thinking he could never go here, he couldn’t keep up, he’ll drown….Finally I realized my perspective was wrong. It is not what he cannot do, but what can the school do for him.

We found another small private 15 kids max school–not given the ld label–but the PARENT who started the school believes that every child should be on an IEP. Again, there is none of the extras —no OT, no Speech, all that on our own time…but at least they give very little homework! Still, wouldn’t it just be better if he could do it all there.We spent 2 summers at the Lab school — if only we could get transfered to DC. They loved him there, waiting list a mile long and they offered us a place on the spot — he is an incredible kiddo, if I do say so myself–his smile could melt an iceberg—but it would have meant no dad—job is not in DC.

We did spend about a year w/no therapy (time for a break) and he really slipped—became hypoactive, really uncoordinated, not very happy. We went back to OT and he was his happy self again. So, I just do not know!

I know there are things he needs, I know the school cannot provide and I know one day I will be gone and he will have to get by w/out me—It is my job to ensure he is equipped to handle life on his own. How do we get there?
I do not know, but we will figure it out.

Still–high hopes for IM.

Ciao cyberfriend,
Margo

Submitted by Anonymous on Fri, 05/31/2002 - 1:58 PM

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You raise a really good question Socks and I am not sure I have an answer. My son this morning said he wants school to be over. I told him only nine more days. Yeah, he said but then I have to do school in the summer. I told him his “school” wasn’t going to be nearly as long as regular school. He is going to be tutored by a Lindamood trained tutor three days a week for an hour and I am going to do some math and keyboarding with him. I understand where he is coming from but there are no simple answers when you have a child who struggles in school. I have been told by his teacher that he needs constant review-that I can’t let the summer go without him doing math and the reading is a given. I am trying to let him be a kid—I have never sent him to summer school even though he has been elgible because I could do more in less time. I took care to find him a daycamp he would love but would allow him to be tutored before he went. But he has had a lot of therapy and I wish it wasn’t so.

I don’t know if I want my child to be “normal” as much as I want life to be easier for him. I have seen two friends with LD children really struggle as they hit high school. Both kids ended up in counseling and on antidepressants and barely graduated from high school. I guess it is what it keeps doing “programs”—I feel like it is pay the piper now or later. Kids who seriously lack skills have a major disadvantage coping with school. And until he get through high school at least, school is not a big option.

I can’t say that my goals even necessarily include college for my son anymore. It’s not that I wouldn’t want him to go if he wants to or don’t hold high expectations for him. It is just that education may not be the route for success for him. At this point, I just want him to make it through high school emotionally intact–and I think that is pretty hard to do if you can’t do the work. And so we keep on trudging and struggle to keep some balance.

Beth

Submitted by Anonymous on Fri, 05/31/2002 - 2:32 PM

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socks wrote:
>
> Margo,
>
> It’s funny that would post this. This has been bugging me for
> a while.
>
> Why do we always look at our children as defective? So much
> emphasis is put on what they can’t do.
> I know soo many people who are ld with gifts only others wish
> they had,but yet no time in the day is left to allow a kid to
> build on these gifts.
>

My understanding of this dilemma is such that we do not really make choices- they have been made by the school system/society (?) to educate children in a particular way using particular methods that do not work for our children. We are just “patching” our children so they can survive in this setting. Had they be given option to learn by discovering without reading from books, I would not mind that our son does not read well. Unfortunately, the reality is that he is required to learn through reading and the only option given to us is to remediate his weaknesses so he can survive another school year, hoping we will not hear next year: “mom why am I getting stupider and stupider every year?”…What I am wondering/worring about is- would I have enough strength/time/money to build on his gifts (which we successfully did before he started school)…?

I know he will shine with his gifts when he will enter “adult life” but I do not want him to lose himself before that when he is failing in high school…

Submitted by Anonymous on Fri, 05/31/2002 - 2:57 PM

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Beth,

I think you put it really well. It is not so much that I want my son to be normal, I just don’t want life to be so difficult for him.

I am sure he depends on me much more than the average 10 year old – I cannot honestly trust that he will not get run over by a car if he crosses the street alone. If I tell him to watch, he forgets by the time he gets to the end of the driveway. I guess I could go on.

It is 11pm at night for me.
Goodnight Ladies,
Margo

Submitted by Anonymous on Fri, 05/31/2002 - 3:02 PM

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As I struggle to put together a summer plan for my son, and a different fall plan for when school starts again, I am constantly thinking about all of the issues you have all raised. But he doesn’t belong in a special school right now, so I also feel that we have to help him adapt to his uneven abilities so he can survive, learn and enjoy the regular school he is in. I absolutely will not have him in therapy/remediation every day and I am trying to find ways to consolidate services (ie, a psychologist that can do reading remediation) and prioritize. Our new psychiatrist just told us that social skills support is important, and yet that was the one activitiy we are terminating (for now) to make room for other things. One of my frustrations is that everyone who sees my son finds him very difficult to diagnose - leaving the burden of deciding which intervention we should do now to us. We just have to all do the best we can.

I find all of your posts, and input very helpful in determining the course of action. Antecdotal evidence from other mothers who have been there is sometimes more valuable than what the experts have to say.

On the husband side, mine also thinks I am too anxious about his (I am!) and that creates a whole other set of problems.

Everyone hang in there.

Submitted by Anonymous on Fri, 05/31/2002 - 4:48 PM

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Socks,

I’m glad you brought this up. I was beginning to think I was the only one to have those exact thoughts.

Defective or not? Maybe GOD planned us that way. If you really get to know someone, most people have strengths and weaknesses. Some are more noticable than others ,but if you look hard enough at yourself I bet you can find a few. For those of you that don’t believe in a higher person than on earth. Try looking at it as though we are all part of a big picture. We just can’t see what that big picture is yet.

After school or in school? I often think whether or not is it an injustice to have all the extra programs after school or during. If I were a kid I know I would say give me a break. As a parent I also say I need my breaks after work or after taking care of the kids all day. I believe the body and soul needs a break.
Do we actually know how hard our kids have to work during a school day just to try and keep up?

Submitted by Anonymous on Fri, 05/31/2002 - 6:37 PM

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This is a great thread! So many of you have pointed out the concerns, fears and hopes we have for our kids. How we really don’t want them to change (I adore my son the way he is!). But I want his life to not be soo difficult, or to “destory” him. And I want him to be safe (and even be able to cross the street without me freaking that he’ll be hit by a car — because he sees a catepillar in the road!).

And gosh! we’re all in this same boat — researching, buying, trying and frantically searching for “something” that’s going to fix it. This is exactly what I’m doing….and worrying. Will my son have enough time for swim team and soccer this summer?

Thanks everyone for sharing your thoughts here. I don’t feel so alone or “crazed.”

Submitted by Anonymous on Fri, 05/31/2002 - 7:05 PM

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My child works very hard in school. He loves OT and sees it as a break. He does mazes and form drawings with the OT. If you ask him it is his favorite subject.
I think he gets much more benefit from his time with her than he does sitting in class fidgeting bored out of his mind.

He has gotten better at certain things with remediation. I only wish I started the process sooner.
He isn’t broke. He is brilliant. I just want to remove the barriers that will alow him to express his brilliance to the world.

wind wrote:
>
> Socks,
>
> I’m glad you brought this up. I was beginning to think I was
> the only one to have those exact thoughts.
>
> Defective or not? Maybe GOD planned us that way. If you
> really get to know someone, most people have strengths and
> weaknesses. Some are more noticable than others ,but if you
> look hard enough at yourself I bet you can find a few. For
> those of you that don’t believe in a higher person than on
> earth. Try looking at it as though we are all part of a big
> picture. We just can’t see what that big picture is yet.
>
> After school or in school? I often think whether or not is it
> an injustice to have all the extra programs after school or
> during. If I were a kid I know I would say give me a break.
> As a parent I also say I need my breaks after work or after
> taking care of the kids all day. I believe the body and soul
> needs a break.
> Do we actually know how hard our kids have to work during a
> school day just to try and keep up?

Submitted by Anonymous on Sat, 06/01/2002 - 3:51 AM

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I agree, Socks. There has to be a limit when trying to force our children to fit a mold (public education) that they just may not fit. Our state has this awful high stakes testing, and we will face the first gateway at the end of third grade, then fifth, then eighth, then an exit exam in 11th grade. Even though my child is not severely delayed, I wonder if it is realistic or possible for her to pass all these tests. Of course, it is too soon to tell.

But I want to make one thing clear. The moment they start killing her self-esteem, I will take her out and happily homeschool until she graduates from our specially designed high school program…one in which her gifts and talents can be developed. And if she grows up and is a florist or a hairdresser (she’s good at visual motor things), then that is just great with me. But I am not going to kill her spirit by forcing her to remain in a system that will cause her to feel she is a failure. I’ve seen too many kids drop out in high school because one day they figured out they just weren’t going to make it. It makes me sick.

Janis

Submitted by Anonymous on Sat, 06/01/2002 - 12:58 PM

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The big question though..

Once it is all said and done,and your kid is having emotional problems in high school,despite your proactive remedial efforts,then what??

Children want to please,they want to please more then anything else they do.Will my children one day blame me for my efforts?

I guess the thing that I wonder about,I often thought that we could hurry up and do these programs,and it would be all over,they would be happy,”normal”,and well adjusted.

Well they are 12 and 13,the quest is still going strong,and they have a mom who is ld,and damn it you just can’t pick it up at the store and be done with it. It is a life long thing,it is a part of who they are,and adjusting to who you are is sometimes the most important part.

This is my only point. Being LD,is being LD. You will always be LD,I don’t care how much remediation and improvements you make for the classroom teacher or the kid. They will always be LD,and THAT fact isn’t so bad.

Submitted by Anonymous on Sat, 06/01/2002 - 1:17 PM

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Everybody has an opinion. I sometimes think my husband has a built in denial gene. Stop thinking about it ,and it will go away….

I do want to ask you,when is a child ready for a “special” school? And if they aren’t ready yet,when will they be? Do you wait until the school has failed him miserably? Do you gauge how defective they are and finally decide to give up and send them to a “special” school? Is going to a special school a bad thing,or a failure thing? I am just curious,have heard this comment before,of course I am defensive about it,I send my kids to a “special” school. It was without a doubt the very best thing I ever did. My kids are happier,they are learning and their self esteem improved dramaticly. I am a strong advocate for “special” schools,and would not want anyone to think it is a warehouse for all who are defective,because this”special” school isn’t. Now there are “special” schools,and there are “special” schools. I was appalled to find this out. I did a presentation at one of those”special” schools. Niavely I thought all the”special” schools,were like my kids school was,not true.In a conversation with the director of one such school,the comment was made by her,stating we both knew these kids would never go onto college. What! I smiled and told her she better never tell MY kids that.Of course she would never get the chance,and I stopped ever reccomending this school to anyone,so she wouldn’t get the chance with any other kid,as far as I was concerned. Just like any other program,remedial tactic,counseling,or accomodations,even “special” schools are dependent on the type of people who run them.

Submitted by Anonymous on Sat, 06/01/2002 - 1:27 PM

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Yes they will always be LD, but once you get to the point in your life where you can choose your own way, does it matter? we all have strengths, and in fact we look for adults to work in the areas that they have strenths ( I want my doctor, accountant, haridresser for example to be very specialized - I don’t care if they are well rounded!) part of the problem is that society wants kids to be well rounded, and our kids aren’t … so we have to support them. I also want my son to have options. 30 years ago he’d be an underachiever at school, and end up a computer programmer. (And I don’t mean that as an insult - I am a total techie !!) The difference is that I didn’t want him to be pigeon holed at the age of 5.

The bottom line is self esteem . That is my goal for both of my kids (LD and Non-LD) . This is what parents do - we just have to be more careful with our unique children.

Submitted by Anonymous on Sat, 06/01/2002 - 1:35 PM

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Hi socks, I’ve been thinking about special schools alot lately too. We live in an urban area where public schools are out of the question for my son. He is enrolled in a regular private school (like a prep school) which is very common here. Its a lovely school, but they provide no internal support. So far our team feels even the special schools for high IQ kids are “too special ” for him, so we find ourselves in this nervous place - compelled to make his current school work . He’s only in 2nd grade but the work gets increasingly rigorous, and by 4th grade if he can’t do it then we’ll have no choice but a special school . So by definition we have to see if he fails. There doesn’t seem to be a middle ground for us which is so frustrating. Obviously I don’t want him to fail, or to have to leave his friends - but sometimes I think a school made just for kids like him, where he doesn’t feel different b/c of the ways they accommodate him would be such a relief. You have nothing to be apologetic about - your kids are lucky you have been able to find the right place for them.

Submitted by Anonymous on Sat, 06/01/2002 - 1:45 PM

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Totally agree:-)

Do you know who Shannon Carter is? This is just a bit of trivia on the side.

Shannon Carter is a kid who’s mom,fought the school system and won:-)
She filed DP due to educational regression and won private school reimbursement. A big case that shaped special educational laws today. She,now a days is a beautician and owns her own beauty salon. Sorry,lot’s of coffee this morning,your hair stylist comment reminded me.

Submitted by Anonymous on Sat, 06/01/2002 - 1:48 PM

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My friend,your right. One day the rollercoaster ride will be done,and they will have the strength to go ahead and be whoever they want to be.

I just hope they don’t want to put me in an old folks home:-)

Submitted by Anonymous on Sat, 06/01/2002 - 2:06 PM

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Boy I agree with that.

You know I have a friend whose child I swear has an undiagnosed ld. I can tell she thinks I am nuts because my child is in “special” ed. Like this is some place they put the deviant losers of the world. Yet, her child won’t get the help he needs because she is wrapped up in that stigma.
I know she thinks my child doesn’t need it because he is verbally gifted and outside of school everyone thinks he is shall we say the dreaded word “normal”

I hate all these labels. I really do. I don’t think any of the labels that are used define my boy.

You can’t define a child. They are all unique. They all have strengths and weaknesses diagnosed or not. The lds are so complex. Apraxic, motor deficiencies, attention deficit, visual perceptive deficit. My son has a little of each. I find out more of what he “has” every day.
I think alot of people have these same things. There is another little boy on his baseball team who does exceptionally well at school. Yet, with his motor coordination deficits he makes my child with motor deficiencies look like Derek Jeter.

So this parent holds her son up as “normal” because he does well in school. As if there is such a thing as normal. God nows I was never diagnosed with an LD but I hardly consider myself “normal” or without deficits. I know I have them, I just have adequate coping strategies.

Ok, I will stop ranting now.

Submitted by Anonymous on Sat, 06/01/2002 - 5:26 PM

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if one more person says “learning disability - but he’s so bright..” or that their kid is in the “smart” reading group just because their child was fortunate enough to be an early reader. What does that my son - dumb? What they don’t realize is that even though my son can’t read at grade level, his conceptual skills are off the charts. I’ve got news for some of these parents - some of these early readers are also LD, they just don’t know it yet. I too feel like I can spot it a mile off … Interestingly, some of the really really early readers in my son’s have serious motor issues. Just an observation. These are all nice kids, I just wish other parents didn’t make assumptions about my son’s intelligence just because he has a learning disability.

Submitted by Anonymous on Sun, 06/02/2002 - 3:10 AM

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Karen, I know exactly what you mean!!! The other day there was one mom who was telling me how brillant her son is (in comparison to the rest of the class). She even had the nerve to say to me, “Well, you know. You help out in the class. You see what’s going on.” And I’m thinking. There’s one kid in particular who is at the “very bottom” of the class. He’s quiet, well-behaved and tries very hard in school. But sometimes he can’t finish his work because he doesn’t always “get it.” He doesn’t always hear the directions. He can’t always explain his answers as clearly or fully as the other students. Reading and writing are very slow and difficult for him. He is in the “lowest” reading group and it’s very obvious that he is the the slowest reader in the class. This is my son. And I’m thinking…why is she saying this to me? She helps in the classroom and very obviously knows my son’s abilites in the class (these parent helpers work most often with the kids who are struggling).

How dare she compare her son to mine! And how dare she compare him to these other really great kids in the class who struggle— but each have their own gifts or strengths. That makes me so angry!!! (the “momma bear” in me! ;-)

Submitted by Anonymous on Wed, 06/05/2002 - 1:24 PM

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I’m Grrrring right along with you sister mommabear. I hate that instant equation. Good at things schools value = smart. Good at things not on school roster = dumb, retard,future street cleaner… Again and Again I’ve seen in the real world that the kids with the academic honors don’t do well in the real world unless they’re actually good at learning. Because the Academic world and the real world have totally different criteria and the skills for getting good grades are different from the skills that drive the real world.
If I hear one more time. “Oh Jack’s dyslexic? Strange he seems so smart….”.
That said my son wet his pants this weekend because he asked a park attendant where the toilets where and the attendant just pointed him towards the sign which then pointed in the direction of the toilets and which he culdn’t read. Our kids need to reach a survival point and any remediation that gets them there faster leaves time and energy forfinding and developing talents.

Submitted by Anonymous on Wed, 06/05/2002 - 2:15 PM

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Laura does that description of your son hit home for me. My oldest son is exactly like that. Funny thing is his teachers this year told him they thought he would make a great teacher due to his postive qualities. I heard this and was floored. I could not believe I was standing there listening to such positive things said about my son. For years we heard such doom and gloom on how he would amount to nothing. They wanted him to know that they thought if he continued his hard work he would do well. His math teacher wrote him a very nice letter stating how proud she was of him for not quiting. She stated when he started in her class she was very worried because he just tried to hide. It was this that made him the “target” of her intervention. Although she “rode” him for the 2 years he was in her class she did it with fairness and kindness. When my son 1st started her class he hated her, now he comments on how it was the best thing to happen to him. She and her letter will always be looked upon by him. When they suggested going into teaching he thought it was a good idea and is seriously looking at it. He says he wishes he could change just 1 life the way his was. Every day I thank God that we had the opportunity to change school systems because it has made a huge diference.

Submitted by Anonymous on Thu, 06/06/2002 - 8:45 AM

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Sorrry Laura
Been thinking about yourpost. Firstjust angry along you, but wondering has your son been diagnosed with CAPD? If so shouldn’t he get some accommodations like getting more time to answer and somethng to help him hear. Good girl for going in to class with him and being able to standback and just help. Even at boy scouts I find that agonizing when i see he hasn’t understood the directions because my son hasn’t heard the leader. But isn’t that an accommodation with some kids -that they hav someone with them to help them ? Definitely not an expert here, but seems like your school should be doing more for him in the way of accommodation.

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