Help me sort my muddled brain...

[Scoobymummy]

So I'm trying to decide next steps for my ds. Up to this point, I've been teaching him gently and working within his natural development, but now I feel like we've hit a wall and I need to investigate options for him. I believe he's dysgraphic - reading is excellent, but writing is almost non-existent. Writing more than 4 or 5 words is physically uncomfortable for him - he goes pale, gets a headache and circles under his eyes. What would be more valuable for him .... a vision assesment or an educational assesment? I've always been leery of ed assesments --- this area isn't very homeschool friendly and my fear is that it will be a long day of tasks he won't be able to manage and it will negatively impact his self-confidence (which is quite high - he is very open about his inability to write). I don't want to go through that only to be told I should put him in school, kwim? What would an ed assess get us? Will they just recommend accomodations or give practical advice for handling specific problems?

[Element]

So I'm trying to decide next steps for my ds. Up to this point, I've been teaching him gently and working within his natural development, but now I feel like we've hit a wall and I need to investigate options for him. I believe he's dysgraphic - reading is excellent, but writing is almost non-existent. Writing more than 4 or 5 words is physically uncomfortable for him - he goes pale, gets a headache and circles under his eyes. What would be more valuable for him .... a vision assesment or an educational assesment? I've always been leery of ed assesments --- this area isn't very homeschool friendly and my fear is that it will be a long day of tasks he won't be able to manage and it will negatively impact his self-confidence (which is quite high - he is very open about his inability to write). I don't want to go through that only to be told I should put him in school, kwim? What would an ed assess get us? Will they just recommend accomodations or give practical advice for handling specific problems?

 

How old is he? Does he have pain/sickness issues while writing numbers or letters too, or is this just a composition issue? I'm sure you will receive helpful advice from other moms of kids with dysgraphia and other similar issues, but I wanted to chime in and say the portion I bolded within your post sounds just like my daughter. She was recently diagnosed with a connective tissue disorder and is awaiting a pediatric ophthalmology appointment. We began by just speaking to our pediatrician, who sent us to a geneticist. I doubt this is the road you will take (I don't think most families need to see a geneticist for learning issues) but I do think that starting with your child's ped is always a good first step.

 

We have not had an educational assessment, so I'm sorry I can't answer that question for you.

[Scoobymummy]

He's 11. Numbers aren't as troublesome, but still lots of reversals. He can dictate beautifully, so getting his thoughts out isn't an issue, it's getting the words on paper - spelling and handwriting (and typing -we're working on that, but it's a long haul - after a month of daily practice he's still at 7 wpm and def can't produce anything typewritten independently). The pediatrician was helpful to a point - she's a DAN doc, so lots of advice on diet, supplements, etc. But where we live, any referals of this type aren't done through a doc, but through school - so they'd just give me a phone number to call. I've dropped off her list, so I'd have to get re-referred (not sure she'll take us as her focus is strictly autism now) and there really aren't any other peds in the area I'd trust. Only medical diagnosis we got was PANDAS (autoimmune).

[wapiti]

I would get an evaluation with both an OT and with a COVD optometrist. I would also schedule an eval with a neuropsych or ed psych who specializes in LDs. The COVD and OT might recommend some psych names.

[RamonaQ]

I would say an educational assessment because you would likely get information about how best to instruct in areas of weakness and harness his areas of strength. I would do a lot of calling around and seeking out referrals. After that I would discuss openly with the evaluator that you homeschool and are not looking to put your child in a school, but instead are looking for best practices to help teach him.

[Pen]

My ds looks like that when he is having a physical reaction to a substance--which can include ink, paper, etc. Given that you mention something autoimmune, I'd suggest looking for something like that as a possible issue, in addition to learning disorder problems. They can co-exist and worsen each other.

[Tiramisu]

How old is he? Does he have pain/sickness issues while writing numbers or letters too, or is this just a composition issue? I'm sure you will receive helpful advice from other moms of kids with dysgraphia and other similar issues, but I wanted to chime in and say the portion I bolded within your post sounds just like my daughter. She was recently diagnosed with a connective tissue disorder and is awaiting a pediatric ophthalmology appointment. We began by just speaking to our pediatrician, who sent us to a geneticist. I doubt this is the road you will take (I don't think most families need to see a geneticist for learning issues) but I do think that starting with your child's ped is always a good first step.

 

We have not had an educational assessment, so I'm sorry I can't answer that question for you.

 

 

Element, Did I know you get a new diagnosis from genetics (me, bubblehead) and did I miss it? Does your dd have trouble with reading or just writing?

 

My dd, who I suspect may have a (benign?) genetic connective tissue disorder, is fine with reading but has had issues with writing, though life has become much better with typing. I have another dd who is also on the hypermobile side and she does not have trouble writing, so the effects of hypermobility aren't very clear to me. Maybe it's just a matter of degree. But it couldn't hurt for the OP to check for bendy fingers and wrists.

 

The other things to consider that come to mind are SPD and working memory, which I suspect may be contributing to our issues.

 

Totally OT, but a different dd was just checked for Marfan's by a doctor who noticed how tall she was. After checking her eyes, hypermobility, finger length, palate height, arm span/height ratio, etc., she decided not to bother having an echocardiogram done. The doctor discovered she is only hypermobile in her ankles. Thankfully, she doesn't have to write with her feet. :001_huh:

Edited October 31, 2012 by NJKelli

[Element]

Element, Did I know you get a new diagnosis from genetics (me, bubblehead) and did I miss it? Does your dd have trouble with reading or just writing?

 

 

 

 

This is the same EDS from a little while back.

 

She's an advanced reader: She's in 2nd grade, currently reading middle school books (the Septimus Heap series) but really struggles to write more than a few (less than 10) words at a time. I think it has to do partially at least with the posture it requires to write. She can get cozy in a chair to read, but writing requires a much more rigid posture. She is works mostly by dictating to me, and sometimes she works by typing. We are planning on seeing an OT sometime after the new year.

[Tiramisu]

Sorry. No new dx, Kelli. This is the same EDS from a little while back. You're right: I guess she wasn't "just" diagnosed, as this dx happened a couple of months ago. It has taken this long just to get in to see the ped ophthalmologist though. She's an advanced reader: She's in 2nd grade, currently reading middle school books (the Septimus Heap series) but really struggles to write more than a few (less than 10) words at a time. I think it has to do partially at least with the posture it requires to write. She can get cozy in a chair to read, but writing requires a much more rigid posture. She is works mostly by dictating to me, and sometimes she works by typing. We are planning on seeing an OT sometime after the new year.

 

Okay, I was wondering if it was something newer.

 

The posture thing is a good point to consider. That brings to mind hypotonia. There have been many cool threads on low tone.

[PeterPan]

Didn't the DAN doc do *any* screening or give you *any* sense of what issues he has going on?? Any ped at all can check for low tone. I mean there are just BASIC things that doc could have eliminated for you or pointed you towards. The ped can give you the EF survey. You usually need a referral through your ped if you're trying to get insurance to cover it anyway, so it seems like that really needs to be your first step. You don't want to make a $300 or $500 or $2K step till you make the $60 one, kwim?

 

Then I would start sifting through things. I don't know what PANDAS is btw, so I could be missing something totally important to understanding what you're saying. If he hurts when he writes ANYTHING, no matter what the utensil or writing instrument, yup you're looking at ped and OT and whoever they think is the next step. If it only happens when he tries to write school work but it doesn't happen when he say colors, that would make me say head to np first. The headaches could be stress or vision or both. I think a vision eval (just a basic one with a doctor, preferably a developmental optometrist so you get extra screening) is a good thing.

 

BTW, not all neuropsychs are anti-homeschooling. Ours was just fine with it, said small group was BETTER for dd than large, that she'd fall through the cracks in school, to keep doing what we're doing (which has always been rather rogue and hack), keep the academics down and make lots of time for creativity, etc. So it just really varies.

 

It's going to take you longer to get into a np than some of these other options. I would figure out who's paying for this. If it's insurance, then they'll assuredly want that ped visit before anything else. So then I'd make your laundry list of concerns, go to the ped, and walk out with referrals for stuff. But tone and physical issues that need a referral to an OT the ped can screen for. They can screen for adhd, spectrum, and EF issues. Not all peds are horrible. I was dubious, but we actually have one we like now. We agree to disagree on a few things, and he helps me out with my worries on developmental stuff.

 

BTW, 11 is a REALLY common age for evals. It's when everything hits the walls and their gifts can't cover up their weaknesses anymore. So you're NOT the only one doing this. We were in the same position, nuts, exactly two years ago. Go back and read my posts, hehe. Dd was having headaches (for which we did VT, yes) and pain with writing (OT) and just some more bizarre things that we needed explained (finally got the np eval). We didn't do it all at once, and 2 years later life is a lot better! Well hmm, was that actually 3 years ago? Whatever, you get my point. :)

 

On the typing, it was awful with my dd too. We'd work and work, and it was like the faster she tried to go the less she was willing to touch type and the more she reverted (implacably) to pecking. It was HORRIBLE. I was in my (as usual) great depths of despair over this and started googling dyslexia and typing, figuring that might give me some clues. That was how I came across the Dvorak keyboard layout. It's an alternate keyboard layout, more efficient, and actually it's considered FASTER. All I know is she can touch type Dvorak and could hardly peck QWERTY. I think QWERTY had too much movement up and down. If you watch her type Dvorak, her fingers seem to stay in one place. So it might be something to look into to see if it would help.

 

Good luck sorting it out. Might not be a one step answer, honestly. Just take it one step at a time. As you say, when you get the names and know what's going on, then you can decide what to do about it.

[Scoobymummy]

My ds looks like that when he is having a physical reaction to a substance--which can include ink, paper, etc. Given that you mention something autoimmune, I'd suggest looking for something like that as a possible issue, in addition to learning disorder problems. They can co-exist and worsen each other.

 

There's definitely a health component that I've never quite been able to solve -- looks a lot like fibromyalgia - every weather change causes headaches, fatigue, achiness, tender points on the muscle. I have it as well - candida diet has helped a lot and I'm having both of us tested for allergies in the next few weeks.

[Scoobymummy]

Didn't the DAN doc do *any* screening or give you *any* sense of what issues he has going on?? Any ped at all can check for low tone. I mean there are just BASIC things that doc could have eliminated for you or pointed you towards. The ped can give you the EF survey. You usually need a referral through your ped if you're trying to get insurance to cover it anyway, so it seems like that really needs to be your first step. You don't want to make a $300 or $500 or $2K step till you make the $60 one, kwim?

 

Then I would start sifting through things. I don't know what PANDAS is btw, so I could be missing something totally important to understanding what you're saying. If he hurts when he writes ANYTHING, no matter what the utensil or writing instrument, yup you're looking at ped and OT and whoever they think is the next step. If it only happens when he tries to write school work but it doesn't happen when he say colors, that would make me say head to np first. The headaches could be stress or vision or both. I think a vision eval (just a basic one with a doctor, preferably a developmental optometrist so you get extra screening) is a good thing.

 

BTW, not all neuropsychs are anti-homeschooling. Ours was just fine with it, said small group was BETTER for dd than large, that she'd fall through the cracks in school, to keep doing what we're doing (which has always been rather rogue and hack), keep the academics down and make lots of time for creativity, etc. So it just really varies.

 

It's going to take you longer to get into a np than some of these other options. I would figure out who's paying for this. If it's insurance, then they'll assuredly want that ped visit before anything else. So then I'd make your laundry list of concerns, go to the ped, and walk out with referrals for stuff. But tone and physical issues that need a referral to an OT the ped can screen for. They can screen for adhd, spectrum, and EF issues. Not all peds are horrible. I was dubious, but we actually have one we like now. We agree to disagree on a few things, and he helps me out with my worries on developmental stuff.

 

BTW, 11 is a REALLY common age for evals. It's when everything hits the walls and their gifts can't cover up their weaknesses anymore. So you're NOT the only one doing this. We were in the same position, nuts, exactly two years ago. Go back and read my posts, hehe. Dd was having headaches (for which we did VT, yes) and pain with writing (OT) and just some more bizarre things that we needed explained (finally got the np eval). We didn't do it all at once, and 2 years later life is a lot better! Well hmm, was that actually 3 years ago? Whatever, you get my point. :)

 

On the typing, it was awful with my dd too. We'd work and work, and it was like the faster she tried to go the less she was willing to touch type and the more she reverted (implacably) to pecking. It was HORRIBLE. I was in my (as usual) great depths of despair over this and started googling dyslexia and typing, figuring that might give me some clues. That was how I came across the Dvorak keyboard layout. It's an alternate keyboard layout, more efficient, and actually it's considered FASTER. All I know is she can touch type Dvorak and could hardly peck QWERTY. I think QWERTY had too much movement up and down. If you watch her type Dvorak, her fingers seem to stay in one place. So it might be something to look into to see if it would help.

 

Good luck sorting it out. Might not be a one step answer, honestly. Just take it one step at a time. As you say, when you get the names and know what's going on, then you can decide what to do about it.

 

Thanks! lots to think about here. What is EF survey? np eval? Acronyms!! lol

 

Looks like I'm going back to the ped.

 

btw ... PANDAS is pediatric autoimmune disorder associated with strep :)

[PeterPan]

EF=executive function

np=neuropsychologist, neuropsychological eval