Writing Disability?

[coastalfam]

Hey all. We HS though a local charter. I decided at the beginning of the school year to request a special education evaluation for my nearly 9yo. This kiddo is very bright, but asynchronous. He has a diagnosis of Generalized Anxiety Disorder, with a possible dx of OCD, but his therapist isn't sure just yet. He's not exactly open. What we do know is he has a high level of anxiety. He is bouncy, forgetful, terrible at being organized, and totally paralyzed by any request that involves having to plan (like what toys to pick-up first). ADHD runs in my family, and I am thinking this may be a part of his struggles based on the amount of time he spends in motion, his tendency to perseverate, and other issues I mentioned above, however these can also be OCD. But what is really dropping off lately is his writing ability. I guess I should say it just has never progressed beyond end of Kindergarten level. In fact, it seems to have gotten worse with each year--I think first grade was the pinnacle of his writing ability, to be honest. He is now in 3rd grade. When he writes we have epic issues. I am really good with him. I channel my best self every time we sit down to do writing. Right now, he is able to copy one sentence... with such drama and tears. He cannot independently write a sentence. He is able to dictate a paragraph to me, and then write the paragraph in portions spread out over two or three days. He balks at ALL writing. He loves math, and is able to do all his work in his head to avoid writing. We haggle over who will write the answers to what. I have always felt that fine motor is a challenge, and so have required him to learn knitting, work on an instrument, and take art classes--of course all these things are a nightmare to him, but less so than actual writing, so we just call it "exercise" for his hands. The writing itself looks like a Kindergarten students. It is large, unevenly spaced, lots of reversals, missing letters, and double or triple letters. We have use Handwriting Without Tears from the start, as well as Orton Gillingham method to learn reading--his instruction has been very explicit. My middle son had quite a time learning to write, so on one hand I keep thinking my 9yo will eventually "click" like my 11 year old did. My 11 yo does not have nice looking handwriting despite ongoing work, but loves to express himself through writing. He does not have anxiety, so that might factor in. My 9yo just has always had a lot going on. Super bright, yet super reluctant. Loves reading, loves math, loves science and history, totally shuts down if any other those things include filling in a blank, or writing a sentence, or drawing a diagram. He is also very rigid, very "rules" based. He does not do well with change or surprises (as simple as bumping into an acquaintance). I just don't know how to tease all this apart. I want to trust in the testing process we are in, but the whole reason we HS is due to distrust in public school due to my oldest son's disability, sooo...  What does this look like to you experienced parents? "Just" anxiety? Something more? Thanks for you ideas!

Edited October 7, 2019 by coastalfam

[PeterPan]

If you tell all this to the school, they should do an OT eval and add goals. 

Just so you know, you're skittering into autism land with your list. Your therapist might not be the right person to be doing the diagnosis. I would flat tell the school you suspect ASD (just make it up if you don't yet, you have enough symptoms listed here), and ask if they have an ADOS-trained team or if they refer out. Some schools these days have ADOS trained teams and some completely botch ASD evals. And schools that botch it aren't exactly who you want to trust for answers, which means either filing a dispute or getting someone qualified to do your private evals.

And while you're on it, make sure you mention pragmatics (social skills, how he problem solves issues with others, issues with personal space or realizing what others are feeling, etc. etc.). The theory of mind issues might also be showing up in his reading comprehension.

So no, don't trust the ps evals at all. Their goal is to save money and only identify what they absolutely would have to intervene and do service on. Your goal is to find out what's going on. Technically, you can have ASD or other disabilities and NOT get an IEP or even a 504 for them. The schools are very blunt on this. So if you want to know what his medical diagnosis is, get private evals. If you want to know what is affecting his ability to access his education to such an extent that they're finally willing to offer services or accommodations, ask the ps.

As far as the answer on the handwriting, my ds went through scads of OTs and for whatever reason they didn't bother over the years to update his VMI. Had a developmental optometrist do it, and boom it was in the toilet. We started drawing and doing things for VMI, and his writing is beginning to improve. So writing is not necessarily the way to improve writing.

[kbutton]

I think you need a thorough evaluation that really gets to the bottom of things--your list of symptoms is pretty extensive at this point. If you have access to a developmental optometrist, that should be something you work on as well. ADHD is comorbid with lots of things, and so is anxiety. With the other symptoms you have going, it might not be the full explanation. Having both of those things diagnosed and treated is certainly a layer of the onion that should be tackled, but I would also want to know if there is a broader diagnosis that explains all the symptoms. I have one kid with an overarching diagnosis, and one that just seems to collect diagnoses. 🙂 

We did a lot of remediation piecemeal by stumbling onto solutions ourselves, but having good evaluations is the best place to start.

OT can be such a frustrating thing--it can be visual or bodywork that fixes handwriting, or even a combination. 

[coastalfam]

Thank you kbutton and PeterPan for your perspectives. This is helping me think through all of this better.

7 hours ago, kbutton said:

I think you need a thorough evaluation that really gets to the bottom of things--your list of symptoms is pretty extensive at this point. If you have access to a developmental optometrist, that should be something you work on as well. ADHD is comorbid with lots of things, and so is anxiety. With the other symptoms you have going, it might not be the full explanation. Having both of those things diagnosed and treated is certainly a layer of the onion that should be tackled, but I would also want to know if there is a broader diagnosis that explains all the symptoms. I have one kid with an overarching diagnosis, and one that just seems to collect diagnoses. 🙂 

We did a lot of remediation piecemeal by stumbling onto solutions ourselves, but having good evaluations is the best place to start.

OT can be such a frustrating thing--it can be visual or bodywork that fixes handwriting, or even a combination. 

Boy the onion analogy... you have no idea how apt. We also have stumbled on a lot of solutions with this kiddo. Our school skipped a student study and went straight for a full assessment on account of all of the various modifications, accommodations we already have in place in his daily homeschool. I am really hoping this process reveals some of those layers. I also have one kiddo with an overarching disability (Down syndrome), and to be honest, as big a deal as Down syndrome is, it feels easier than having such a tangled mess of symptoms and possible causes. 

17 hours ago, PeterPan said:

If you tell all this to the school, they should do an OT eval and add goals. 

Just so you know, you're skittering into autism land with your list. Your therapist might not be the right person to be doing the diagnosis. I would flat tell the school you suspect ASD (just make it up if you don't yet, you have enough symptoms listed here), and ask if they have an ADOS-trained team or if they refer out. Some schools these days have ADOS trained teams and some completely botch ASD evals. And schools that botch it aren't exactly who you want to trust for answers, which means either filing a dispute or getting someone qualified to do your private evals.

And while you're on it, make sure you mention pragmatics (social skills, how he problem solves issues with others, issues with personal space or realizing what others are feeling, etc. etc.). The theory of mind issues might also be showing up in his reading comprehension.

We have OT, Psych, and academic eval in the works. This info is really helpful. I do realize we are teetering on the edge of some autism related symptom set, and that is one thing we decided to have him tested for by the school psych. I had never heard of ADOS. Thank you very much! I will find out about that. 

17 hours ago, PeterPan said:

So no, don't trust the ps evals at all. Their goal is to save money and only identify what they absolutely would have to intervene and do service on. Your goal is to find out what's going on. Technically, you can have ASD or other disabilities and NOT get an IEP or even a 504 for them. The schools are very blunt on this. So if you want to know what his medical diagnosis is, get private evals. If you want to know what is affecting his ability to access his education to such an extent that they're finally willing to offer services or accommodations, ask the ps.

As far as the answer on the handwriting, my ds went through scads of OTs and for whatever reason they didn't bother over the years to update his VMI. Had a developmental optometrist do it, and boom it was in the toilet. We started drawing and doing things for VMI, and his writing is beginning to improve. So writing is not necessarily the way to improve writing.

Thank you so much for this reminder! It has helped immensely to remember that as homeschoolers (even though we are connected with the charter) my main goal is to find out what is going on so we can address it in our school, whether or not the school finds he is eligible for OT or resource, etc. I am well versed in IEP's, access, FAPE, etc. having a child with Down syndrome, but boy is it a different animal. We know unequivocally what his medical diagnosis is, and we have never had an issue getting appropriate services (LRE was a different story before we homeschooled), but with this kiddo, boy is it tricky. I am a fish out of water here. Also, I am adding VMI to my list to ask the OT to check for. Thanks.

[Storygirl]

I see red flags for possible autism in your OP as well, to be honest. You said you asked the school psych to test for ASD? I would follow up and ask them what tests they run.

I would think that with what you describe with his writing, that the school will probably find that he has a Specific Learning Disability in written expression. AKA dysgraphia. The tricky thing is that schools can often say, yes there is a disability, but they can't say WHY. It's not their mission to say why -- they just have to decide if there is a disability, make some goals (if there is an IEP) to work on, and decide if there should be accommodations.

You can google IEP accommodations for writing disability to see what ideas pop up. It may give you ideas about what you can do differently at home.

I would consider whether it is beneficial to have him rewrite/copy his paragraphs after he has dictated them to you. In school, being able to use speech to text technology (or a human scribe) is a possible accommodation. But then the school would not require the student to rewrite that material also by hand. You may want to separate composition, which he can do orally, from handwriting practice.

Teach typing.

Keep working on handwriting as a skill. You may want to consult with a private OT for some therapy. You can search old threads here about dysgraphia and writing disability. @exercise_guru for example, has written extensively about the things she has done to help her son.

[Storygirl]

Homeschooling multiple kiddos with disability is hard and often stressful. Take care of yourself, so that you don't burn out!! And find some time in the school day for things that your kids really enjoy, so that school is not always a slog.

Those are my general keep-it-positive tips. I was not great at those things, myself, when we were homeschooling.

You are doing a great job!!!

[coastalfam]

2 hours ago, Storygirl said:

I see red flags for possible autism in your OP as well, to be honest. You said you asked the school psych to test for ASD? I would follow up and ask them what tests they run.

I would think that with what you describe with his writing, that the school will probably find that he has a Specific Learning Disability in written expression. AKA dysgraphia. The tricky thing is that schools can often say, yes there is a disability, but they can't say WHY. It's not their mission to say why -- they just have to decide if there is a disability, make some goals (if there is an IEP) to work on, and decide if there should be accommodations.

You can google IEP accommodations for writing disability to see what ideas pop up. It may give you ideas about what you can do differently at home.

I would consider whether it is beneficial to have him rewrite/copy his paragraphs after he has dictated them to you. In school, being able to use speech to text technology (or a human scribe) is a possible accommodation. But then the school would not require the student to rewrite that material also by hand. You may want to separate composition, which he can do orally, from handwriting practice.

Teach typing.

Keep working on handwriting as a skill. You may want to consult with a private OT for some therapy. You can search old threads here about dysgraphia and writing disability. @exercise_guru for example, has written extensively about the things she has done to help her son.

Thank you for these ideas, and your kind words. They are very much appreciated. I've tended to separate his composition from his writing, as in having him do his dictation one day, then copy another, but I can see how, especially with this sensitive kiddo, that it's best to just give him the accommodation of voice to text, without requiring a later re-write, for composition pieces. Thank you.