What is the next step?

[Loowit]

I am pretty sure that my 10 year old (almost 11) has dyslexia.  I have tried to get him testing, but so far I haven't had much success finding an affordable option.  The doctor said that it isn't a medical issue so the insurance won't pay.  She suggested we go through the schools or pay out of pocket for an evaluation.  When I talked to the schools they will evaluate for a learning deficiency but not for specific things like dyslexia.  We can't afford to pay out of pocket for testing.  He has had several evaluation with Autism clinics and they said that he doesn't meet enough the of qualifications for autism, but he was diagnosed with developmental coordination disorder, executive function delays, speech delays, and he has sensory integration disorder.  He is also slow at coding, whatever that means, and his biggest struggle right now is his spelling and ability to write sentences let alone stories, paragraphs, etc.

 

He is a very bright child.  He is able to work around his difficulties so far and I have been using Apples & Pears at home, along with some other things that are supposed to work well with children with dyslexia.  He just finished his last tests with the public school today.  I will meet with the IEP team in two weeks to discuss their decision, but it is looking like he will not be delayed enough to qualify for services.  I guess I have done enough at home to help him to overcome his shortfalls, but I am reaching a point that I am not sure what else to do.  His spelling has stalled out.  His handwriting is bad, no matter how much we work on it.  He hates writing, and has fine motor delays.  We have tried typing but he is lacking the ability to write proper sentences.  A couple examples of a sentences that he has written:

 

“most people just watch sports†   but people should play them for. being able to run faster, exercise, and FUN!!!.+ catching.

 

today a police box came and went with out a trace some people think it is doctor who fans.

 

He is a very creative thinker.  When he is doing his schoolwork it is usually accompanied by a lot of drawings.  In his spelling book he will draw a picture after each word.  If I would let him I think he would turn in all of his assignments as a drawing.

 

I am just feeling so alone in how to work with him and I am not sure where to go from here.  We are supposed to go back for a follow-up evaluation with the developmental pediatrician this year, but I am not sure how much more they can tell us.  One of the pediatricians we saw lately is pretty sure he has Asperger's.  Could that be the problem I am seeing?  I just don't know anymore.  I am worried that if he doesn't learn writing and spelling he isn't going to be able to go on to college.  His dream is to be a robotics engineer, and I want to help him achieve this by making sure he has the best education possible. 

[PeterPan]

Has he had a speech eval and ST?  ST would be medical, so your insurance might cover it?  An SLP can work on expressive language.  Given the dcd label (which involves praxis, yes?), he might have praxis affecting his speech as well.  Might give you another way to look that helps get you coverage anyway.  Also, Super Duper, Linguisystems, and Great Ideas for Teaching all sell ST and other types of therapy things to the public.  You might find some books in there to target some of your expressive language concerns.  Our SLP just suggested to us some by DeGaetano that GIT sells.  They have good samples there, so something might jump out at you.  

 

Surely when they did all that testing they also ran a phonemic awareness test like CTOPP and eliminated dyslexia?  It will look like dyslexia, yes.  Read and do the things that fit with dyslexia or dyslexic patterns, yes.  He just might not get that label.  You also might try kind of a different direction though, considering how extremely VSL he's turning out to be.  Freed, in his book Right-Brained Children in a Left-Brained World , suggests visualization and backwards oral spelling of the word using the visualized image.  Might be a really fabulous method for him.  Your library might have the book.  It will have other teaching techniques for VSLs as well.  That might get you farther.

 

Adding: they won't do OT for the handwriting?  Has he had an OT eval?  Even if you have to do that privately, he might benefit from the eval and whatever you can afford, say once a month.  They could work on the handwriting and a lot of living stuff (transitions, sensory, etc.).  Or maybe he has already done that?  How is typing going?  Did they put typing in his list of accommodations?  My dd's handwriting has only really gotten decent in the last 6 months or so.  Typing was a mess, so we switched to Dvorak, an alternate keyboard layout.  It would be interesting to see if the output method affects what comes out...  (typed vs. handwriting vs. him dictating to the computer/ipad vs. him using a pool of magnet words to where he's neither using speech nor fine motor)

 

You're not flopping.  It's just hard stuff to sort through...

[Loowit]

The insurance would cover ST, but locally we only have one speech person (private) and he said that DS is not near delayed enough for him to work with him.  He said he only works with really bad cases.  The speech person we saw at the school today said that he is still not getting a few sounds but thinks that he is not delayed enough to get services at the school.  She hasn't officially scored his tests, but she was pretty sure that he didn't qualify.  She did give us a few things to work on and told me to correct him on words when he says them wrong.

 

The autism evaluation didn't really talk about phonemic awareness that I recall, but they did so many different tests it is hard to remember.  The book sounds like a good thing to check into, I will see if our library has a copy.

 

I didn't talk to the school about his handwriting, I guess I didn't think of it at the time.  They did have him do some writing today at his testing, so it is likely to be part of what they are looking at as far as delays.  He has gone to OT in the past.  It was mostly to help him with coordination and to help him get centered when doing work so he could concentrate.  We went for about 6 month twice a month, and it was helpful on the whole, but after a while the OT felt she had shown us all the exercises that she had to help him.  She didn't work much with his fine motor skills, mostly gross motor.

 

He seems to do okay with typing.  He much prefers it to writing.  If he could dictate I think that is would change what he is able to do, but he can't talk clearly enough for the computer to understand what he is saying.  There are times that I have him dictate to me and I type or write it for him, but it is very time consuming and I have two other kids at home.  My youngest has other special needs and needs a lot of my time also.  I am trying to work on a routine that will allow me one-on-one with both boys during the day, but so far it hasn't met with mixed success.

[SandyKC]

he was diagnosed with developmental coordination disorder, executive function delays, speech delays, and he has sensory integration disorder. 

 

With these diagnoses, you should be able to get him into Occupational Therapy (OT) and Speech-Language (SLP) therapy and medical insurance DOES cover OT and SLP.  The OT will help with the developmental coordination disorder and sensory integration issues. OT also commonly works on handwriting when the child has fine motor delays.  The SLP can work on the speech delays and.. if you find an SLP who uses it, might be able to provide the LiPS program from Lindamood-Bell, which will also help with the dyslexia issues.

 

He is also slow at coding, whatever that means, and his biggest struggle right now is his spelling and ability to write sentences let alone stories, paragraphs, etc.

 

The "slow coding" skills can indicate a slow processing speed and/or visual-motor integration issues.  If your son has dyslexia, spelling and writing ARE going to be difficult.. reading requires recognition skills, but writing (and spelling) requires much more involved mental processes because the child has to hold a LOT of information in his head (the sentence he wants to write with each word in the right order), and he has to figure out how to spell each word while still holding the sentence in his brain, and then he has to physically go through the process of recalling how to write each letter and write the word, letter-by-letter, and the sentence word-by-word, and the paragraph sentence-by-sentence while holding it all in his head. 

 

IF a child has working memory deficits, then writing can be a very arduous and difficult task!  That is why you'd end up with piece-meal sentences.  Words, phrases, or thoughts are lost while your son is trying to hold everything in his head long enough to write things down.

 

One way to really help is to separate handwriting from written composition.  Let your child dictate what he wants to write to you (who becomes his scribe) OR use dictation software (speech-to-text, which can be more difficult to use with speech issues).  By letting a bright child dictate as a way of getting his thoughts on paper, it will bring out his creative mind and ability to compose great papers.  This will not impair your child as he gets older.. it's just that he needs to learn the phonemes, how to spell, and how to physically write before trying to integrate it all together.

 

Therefore, it is often helpful to teach each piece totally separately from the other pieces.  For example, for handwriting, use a method of copying from a book so your DS can FOCUS on handwriting as the only skill he is trying to master at that moment.  When he's working on learning the phonemes, he is working on hearing the sound and recognizing the letters that go with that sound. 

 

Does that make sense?  It's basically breaking all of the elements in your instruction apart so that a task (writing) is not so overwhelmingly complex that your DS isn't able to simultaneously manage all of the pieces that go into writing.

 

With Asperger's, that often involves all of the elements you've described for your son, including being very BRIGHT! .. And, there is NO REASON your son can't be taught along the way so he can become the robotics engineer he'd like to be. (Read our story for encouragement).  If you can meet his needs in creative ways throughout his schooling, he's smart enough to succeed academically, ESPECIALLY if you equip him with the ability to use assistive technology to his benefit so he's skilled at it by time he gets to college.. Like using text-to-speech software for writing papers, using a calculator for math, and using audiobooks for reading.

 

I will tell you though.. if he wants to go to college... you need to keep all documentation of his disabilities, therapies, etc. as documentation of a disability.  You will have to have proof in order for him to get accommodations in college, but the good news is that colleges are generally pretty good about granting accommodations when a child has a documented disability.  What you don't want to do is have no documentation, work really hard to get him college-ready, have him go into college with no accommodations and then be faced with having to learn a foreign language, have no extra time for testing, etc.  

 

He is a very bright child.  He is able to work around his difficulties so far and I have been using Apples & Pears at home, along with some other things that are supposed to work well with children with dyslexia.  He just finished his last tests with the public school today.  I will meet with the IEP team in two weeks to discuss their decision, but it is looking like he will not be delayed enough to qualify for services.  I guess I have done enough at home to help him to overcome his shortfalls, but I am reaching a point that I am not sure what else to do.  His spelling has stalled out.  His handwriting is bad, no matter how much we work on it.  He hates writing, and has fine motor delays.  We have tried typing but he is lacking the ability to write proper sentences.  A couple examples of a sentences that he has written:

 

“most people just watch sports†   but people should play them for. being able to run faster, exercise, and FUN!!!.+ catching.

 

today a police box came and went with out a trace some people think it is doctor who fans.

 

He is a very creative thinker.  When he is doing his schoolwork it is usually accompanied by a lot of drawings.  In his spelling book he will draw a picture after each word.  If I would let him I think he would turn in all of his assignments as a drawing.

 

With this, it sounds like he's a visual kind of guy!! If he loves drawing, consider using audiovisual programs for a good bit of his learning.  That can help his learning a lot.  For example, Reflex Math or LexiaLearning for reading are two good choices.  He is much more likely to enjoy school and do well if he has visuals for all of the concepts he's learning.

 

Hope that helps!!

 

I am just feeling so alone in how to work with him and I am not sure where to go from here.  We are supposed to go back for a follow-up evaluation with the developmental pediatrician this year, but I am not sure how much more they can tell us.  One of the pediatricians we saw lately is pretty sure he has Asperger's.  Could that be the problem I am seeing?  I just don't know anymore.  I am worried that if he doesn't learn writing and spelling he isn't going to be able to go on to college.  His dream is to be a robotics engineer, and I want to help him achieve this by making sure he has the best education possible. 

 

[SandyKC]

As I was writing my other reply, you were typing this! Changes things a little bit, but hopefully you'll find some helpful tips in my response anyway.

Hugs!

The insurance would cover ST, but locally we only have one speech person (private) and he said that DS is not near delayed enough for him to work with him.  He said he only works with really bad cases.  The speech person we saw at the school today said that he is still not getting a few sounds but thinks that he is not delayed enough to get services at the school.  She hasn't officially scored his tests, but she was pretty sure that he didn't qualify.  She did give us a few things to work on and told me to correct him on words when he says them wrong.

 

The autism evaluation didn't really talk about phonemic awareness that I recall, but they did so many different tests it is hard to remember.  The book sounds like a good thing to check into, I will see if our library has a copy.

 

I didn't talk to the school about his handwriting, I guess I didn't think of it at the time.  They did have him do some writing today at his testing, so it is likely to be part of what they are looking at as far as delays.  He has gone to OT in the past.  It was mostly to help him with coordination and to help him get centered when doing work so he could concentrate.  We went for about 6 month twice a month, and it was helpful on the whole, but after a while the OT felt she had shown us all the exercises that she had to help him.  She didn't work much with his fine motor skills, mostly gross motor.

 

He seems to do okay with typing.  He much prefers it to writing.  If he could dictate I think that is would change what he is able to do, but he can't talk clearly enough for the computer to understand what he is saying.  There are times that I have him dictate to me and I type or write it for him, but it is very time consuming and I have two other kids at home.  My youngest has other special needs and needs a lot of my time also.  I am trying to work on a routine that will allow me one-on-one with both boys during the day, but so far it hasn't met with mixed success.

 

[PeterPan]

... but he can't talk clearly enough for the computer to understand what he is saying.

If his speech isn't clear and he's 10, you might want to look into PROMPT.  www.promptinstitute.com  

[ElizabethB]

:grouphug:

How far away is a large city with a university close enough to make a trip to where you might be able to get some better ideas for a reasonable cost? It might be worth a trip.

For his writing for now, what if he records himself a sentence or two at a time and then types after listening to that?

Which sounds does he have trouble with? I like this website:

http://www.uiowa.edu/~acadtech/phonetics/#

While not a goal to shoot for, I edited papers of male friends at the Air Force Academy in Computer Science and Engineering programs whose sentences looked like that. Hopefully they all have secretaries now, LOL. All of them that I have kept track of are doing fine and one actually is a co-owner of a multi million dollar company, I assume he has a secretary, I just talked to him for a few minutes at a reunion.

The conversation went like this:

Um, you seem to have a lot of sentences that don't have a verb.

I need a verb?

Never mind, I will fix it, it is going to take a while, you are going to have to help me a lot with my next computer program.

And, when working on my computer program, the conversation went like this:

No wonder it isn't working, you didn't call your subroutine.

Oh, right, how do you call a subroutine?

Nevermind, I'll fix it, just help me with my next paper.

[Pen]

Since speech to text did not work for my ds either, a relatively inexpensive digital recorder was helpful to get ideas recorded so that they could then be typed out later. And then from there expanded on, revised, edited and so on.

 

Spelling has tended to improve with increased reading, and getting things typed on computer helps since spellcheck will pick up at least some errors.  

 

Both spelling and grammar have started to improve as work on foreign language became possible. But having reading solid first worked better for my ds than working on spelling and grammar before that point.

 

Sometimes what schools give such as a writing or reading learning deficiency at least in part translates to ideas like dyslexia or dysgraphia and could at least help to cut down what needs to be done privately when you are able to do that, and might make your child eligible for things like bookshare or learning ally recorded books.

 

We have done a lot of learning with recorded books, films and so on.