Vision development

[mamamoose]

I posted a while back in the special needs forum (by accident--meant to post here) about my son, and I've posted here but here is background and then an update. The thread in the special needs forum is called "Bound to Happen."

 

He is 9, and technically in 3rd grade. I suspected dyslexia by 1st grade but could get nowhere with the school as far as testing because he was still "passing" and tested in national tests as "average." My oldest was reading at a 3rd-4th grade level by the end of 1st grade and he seemed just as bright so it seemed odd that reading would be such a struggle. He HATED it--his eyes hurt, he read words backwards, he skipped words, he lost his place, he could NOT write a sentence to save his life and all his letters were different sizes. He couldn't remember what a letter even looked like without some kind of visual reference in front of him. BUT, he memorizes Bible stories and his comprehension for stories read to him is very high (higher than either of his sisters). The school kept telling me it was his eyes and I agreed but also felt like there was something more to the story. I had his eyes checked 4 different times by 4 different doctors and he got reading glasses but half of the docs said he really didn't need them. I noticed that one of his eyes would flutter when he was tired but they told me that should not affect him. 

 

I got him checked by an outside party for dyslexia and he was diagnosed as severely dyslexic and dysgraphic. I went back to the school asking for accommodations and offering to hire an outside tutor to come to the school, and was denied. They told me he would have to receive tutoring after school. We already had an add/adhd diagnosis, but the school refused both an IEP and a 504, so we pulled him out of school. My physician referred us to a neuropsychologist specifically for neurofeedback, which we did last summer and he was diagnoses with a slow processing speed (I'm sure there is a more scientific term for that but I don't know it). He had a very good response (60%) better on his processing and his behavior improved dramatically but this past month he has had a decline. 

 

Okay so that's mostly background. In my other thread, It was recommended we find a COVD optometrist and have his vision checked. Then, he started archery and said he was seeing double when focused on the target. He has always complained of words moving on the page, seeing double while reading, and his eyes itching/burning/aching while reading. Anyway, it seemed like a good thing to get checked off the list. Except, I couldn't check it off the list, because he has convergence problems another problem I will have to look up. She thinks he could benefit greatly from vision therapy. Here's the really hard part...last summer we spent $4000 on neurofeedback, a weekly 240 mile trip with an overnight stay (not counted in the $4000). I feel like we are chasing rainbows--what if this doesn't "fix" things for him. He's resistant to anything more--he's frustrated and tired of being poked and prodded, and he's depressed. A second opinion is an expensive option with a 1000 mile round trip. And what do I expect with vision therapy?

[Lecka]

Google convergence insufficiency.

 

When I was looking into it, that was one of the non-controversial parts of visions therapy.

 

You might not have to drive so far to find someone who doesn't do everything that a COVD does, but would address convergence insufficiency.

 

I am pretty confident you could get a second opinion on that without driving so far, too.

 

I found that the COVD designation is not popular in my area, but I got recommendations for (iirc) developmental optometrists that had a good reputation. This was from OT bc they wanted me to rule out convergence insufficiency.

 

I ended up being told my son had tracking problems that could be addressed by OT or by a vision therapist; neither thought one was better than the other.

 

I went with OT as it was going to be cheaper and the OT was better with kids, and he needed OT anyway. And we could try the other after a few months if needed. Then OT was helpful.

 

Good luck.

[mamamoose]

Google convergence insufficiency.

 

When I was looking into it, that was one of the non-controversial parts of visions therapy.

 

You might not have to drive so far to find someone who doesn't do everything that a COVD does, but would address convergence insufficiency.

 

I am pretty confident you could get a second opinion on that without driving so far, too.

 

I found that the COVD designation is not popular in my area, but I got recommendations for (iirc) developmental optometrists that had a good reputation. This was from OT bc they wanted me to rule out convergence insufficiency.

 

I ended up being told my son had tracking problems that could be addressed by OT or by a vision therapist; neither thought one was better than the other.

 

I went with OT as it was going to be cheaper and the OT was better with kids, and he needed OT anyway. And we could try the other after a few months if needed. Then OT was helpful.

 

Good luck.

I had a hard time even finding optometrists--I saw 6 different optometrists who all said there was no issue before we found this one, even though I have suspected something was up for several years. I am not sure there is even OT within 70 miles of us...and if that's the case I am looking at 120 for the next city. I am in remote Montana...for reference.

[Lecka]

That makes more sense on the remote part. I got names for people 90 minutes away and I thought that was a long way ;)

[mamamoose]

I'm not at all opposed to traveling any distance--we have an RV and could possible even stay somewhere longer term--if I knew it was going to be of benefit to him!

[Heathermomster]

There are a ton of people with kiddos who benefited from VT for convergence insufficiency. If you find a VT, they should be able to assign homework so that you are not driving as much.

 

Developmental motor issues can adversely affect developmental vision as well. If you are unable to locate an OT, look for a ped PT. If you can find one, ask if they can evaulate your child's motor issues. The eval takes about one hour. Be sure to mention the dysgraphia diagnosis. My kids have both used an OT and ped PT and were assigned specific physical exercises as homework that took about 20 minutes daily.

 

In the mean time, use audio books and scribe. Good luck!

[prairiewindmomma]

My kid is one who had convergence insufficiency.  We did one round of COVD therapy when he was 5, which gave him enough vision to read and do stuff but did not help his handwriting.  We did a second round of OT not COVD full body work for six months this past year and he is back to being fully integrated AND he has functional (but very very slow) handwriting.

 

The idea with both the COVD and OT work is that you are building the magnocellular pathway through body movement in conjunction with eye movement.

 

The OT work did loads for ds's self-esteem.  If you've been failing for a long time and you know that you're failing and falling further behind your peers, it sucks a bit, you know? The OT work did not fix processing speed (and we didn't expect it to), but sometimes taking some of the heavy rocks out of a kid's mental backpack is helpful, you know?

[mamamoose]

I have thought about OT for him already, but it's hard to make anything work with our current location, and without it taking over our lives and thus making him even angrier at his circumstance. Would it be possible to do VT and OT on the same day? Guessing that would be an awful lot.

[Heathermomster]

I have thought about OT for him already, but it's hard to make anything work with our current location, and without it taking over our lives and thus making him even angrier at his circumstance. Would it be possible to do VT and OT on the same day? Guessing that would be an awful lot.

Yes, you can.  

 

OT work for developmental motor involves balance and crossbody work.  There might be some stretchy band and core exercises using an exercise ball.  Our difficulty was finding a therapist that could squeeze us in.  You may have to wait, but maybe waiting and deflecting the costs might be better for your family.  The kids had homework/exercise schedule that we followed 5 days per week.  Therapies lasted about 6 weeks, so the experience wasn't an open ended endeavor.  Deficiencies were noted, an exercise plan was put into place, and then tested after 4 weeks.

 

You may want to look at S'Cool Moves for targeted work at home. 

 

As far as dealing with anger..First of all, these issues don't resolve themselves and your boy is not alone.  He needs to understand that.  Make the experience fun and add incentives.  If you have other children, include them with the homework.  My DD loved working with her brother.  

 

Here's the thing too.  You are on step 1.2 of a tremendous path with a very intelligent son.  Throughout his life, your son will be facing challenges.  The slow processing speed is a pain and affects the way he takes in information.  Dysgraphia is a challenge as well.  The quicker he adjusts to the team mentality the better; otherwise, he is never going to satisfied.  These difficulties do not define him.  The way he responds is the most important part.

 

Good luck and I hope everything works out for you.

Edited January 27, 2017 by Heathermomster

[mamamoose]

Yes, you can.

 

OT work for developmental motor involves balance and crossbody work. There might be some stretchy band and core exercises using an exercise ball. Our difficulty was finding a therapist that could squeeze us in. You may have to wait, but maybe waiting and deflecting the costs might be better for your family. The kids had homework/exercise schedule that we followed 5 days per week. Therapies lasted about 6 weeks, so the experience wasn't an open ended endeavor. Deficiencies were noted, an exercise plan was put into place, and then tested after 4 weeks.

 

You may want to look at S'Cool Moves for targeted work at home.

 

As far as dealing with anger..First of all, these issues don't resolve themselves and your boy is not alone. He needs to understand that. Make the experience fun and add incentives. If you have other children, include them with the homework. My DD loved working with her brother.

 

Here's the thing too. You are on step 1.2 of a tremendous path with a very intelligent son. Throughout his life, your son will be facing challenges. The slow processing speed is a pain and affects the way he takes in information. Dysgraphia is a challenge as well. The quicker he adjusts to the team mentality the better; otherwise, he is never going to satisfied. These difficulties do not define him. The way he responds is the most important part.

 

Good luck and I hope everything works out for you.

This is good advice--it's sometimes easy to get caught up in "fixing" what can't and won't be fixed. His processing speed and concentration improved dramatically following neurofeedback. But I forget that is huge for him. And he's a big picture kid for sure so that makes some things--like math facts--troublesome, even though he gets concepts much more quickly than my other two. I need to think in terms of the marathon and not a sprint...

 

There is a (supposedly) great OT in the same town as the VT. I may check it out.

[mamamoose]

What can I expect, physically, etc, for him while engaged in therapy? He gets terrible headaches 2-4 times per week on a good week. He is also non compliant with me a lot of the time, with school things so I anticipate the same with any home treatment. We usually work through it but I anticipate that will cause stress for us both.

[kbutton]

This is good advice--it's sometimes easy to get caught up in "fixing" what can't and won't be fixed. His processing speed and concentration improved dramatically following neurofeedback. But I forget that is huge for him. And he's a big picture kid for sure so that makes some things--like math facts--troublesome, even though he gets concepts much more quickly than my other two. I need to think in terms of the marathon and not a sprint...

 

There is a (supposedly) great OT in the same town as the VT. I may check it out.

 

If the OT "believes in" VT, they might be a good resource for knowing if it's "good" VT or not so great (or good for specific issues).

 

Our VT said it's fine to overlap VT and OT, but you might want to start VT first a bit and ease into OT. I think we got more out of OT from doing VT first, but it probably depends on a child's specific issues. 

 

If retained primitive reflexes are behind the VT issues (they almost always are), you want those addressed as early as possible by the person who will do the best job with it--it might be VT, OT, or PT. And the VT person might address the ones thought to disrupt visual stuff and not the whole package, unless they are more aware of what they can do and more aware of your child's specific issues. Our VT did not claim to address reflexes as a whole, but they feel strongly about Moro being the lynchpin issue for vision, and they definitely work on and check that. However, we came to them with a list of reflex issues that my son had (which, oddly, showed Moro as being okay and it wasn't), and she took that into consideration when assigning a therapist for VT. That therapist did a ton of body work!  

 

(Our son's reflexes has been tested, at my request, by school OT/PT together. While they couldn't service those or put them in the IEP, they were kind enough to go ahead and test. I have not yet seen two tests for reflexes, two therapies for reflexes, or two delineations of reflexes that match, so YMMV on what works and what doesn't.)

[mamamoose]

I googled retained primitive reflexes and he doesn't seem to fit that at all.

1. When you were pregnant did you have any medical problems? No
2. Was your child delivered at term or early/late? Term
3. Was the birth process unusual in any way? (forceps, suction, C-section, induction, long, short) Induction
4. Was your child small for term? No
5. Were there any unusual physical signs? (jaundice, bruising, distorted skull) No
6. Was there any difficulty feeding or keeping it down? Did your child easily feed off both breasts? Trouble keeping it down but that diminished
7. Between 6 to 18 months was your child very active or demanding? Or particularly quiet and unresponsive? Demanding but all my kids were.
8. Did your child develop a violent rocking motion when standing or sitting? No
9. Was your child a ‘head-banger’? No
10. Did your child start walking before 10 months or after 16 months? No
11. Did your child bum shuffle or skip the cross crawling stage? No
12. Was your child late when learning to talk (2-3 words by 2 years)? No (very early actually)
13. Did your child experience any serious illness or seizures in the first 18 months of life? No
14. Was there any sign of eczema, asthma or allergies? No
15. Did your child have any adverse reactions to childhood vaccinations? Didn't have vaccinations
16. Did your child have difficulty learning to dress his / herself? No
17. Did your child suck their thumb past the age of 5? No
18. Did your child wet the bed regularly past the age of 5? No--potty learned by 2, even at night, no accidents
19. Does your child suffer from travel / motion sickness? No
20. Did your child have trouble establishing hand dominance or crossing the midline with objects? He is ambidextrous. 

At school

1. Did your child have problems learning to read and / or write in the early years at school? Yes
2. Did your child have difficulty telling the time on an analogue clock? No
3. Did they have difficulty riding a bicycle? No
4. Did they suffer from recurrent sinus or ear infections or headaches? No
5. Did they have difficulty catching a ball? No
6. Did your child have ‘ants in the pants’? Not sure what this means
7. Did your child make numerous mistakes when copying from the board? Yes
8. Does your child occasionally miss letters or write them backwards? Yes
9. Does your child have an awkward pencil grip? No
10. Has your child ever been diagnosed with any conditions such as Low Muscle Tone or ADHD? ADHD
11. If there is sudden noise would your child over-react? No

That's the results. It doesn't seem to tip the scale for me that it could be RPR, but maybe I'm overlooking it? He has an issue with very fine motor skills, but I'm undecided if its because of the vision issue or an actual problem--that's why I want to see an OT to determine that outcome.

 

[mamamoose]

I don't know if this is pertinent but he is extremely athletic. He's a competitive skier, state champion wrestler, and participates in swim team and dance/gymnastics. He is very coordinated with gross motor skills and is very competitive. 

[PeterPan]

What can I expect, physically, etc, for him while engaged in therapy? He gets terrible headaches 2-4 times per week on a good week. He is also non compliant with me a lot of the time, with school things so I anticipate the same with any home treatment. We usually work through it but I anticipate that will cause stress for us both.

 

You don't checklist for retained primitive reflexes, mercy. There are tests for every reflex, the actual reflexes. If you go to someone who's really, really good with them, they'll even score them with numbers for degree of retention. You can look on youtube for the tests.

 

Basically, you'd *like* to find an OT or PT who's really good with retained reflexes, get those checked and then do the VT. That's your ideal world. Sometimes chiropractors have training in retained reflexes. Or try youtube. Or use youtube and just do all the exercises. My ds is extremely athletic (team gymnastics, swim team, soccer, tennis, etc.) and he had retained reflexes. Your ds very well might. So just do all the exercises for a month, see what happens. Costs you nothing. Just look on youtube and work through the lists, being very attentive to form. If something is really irritating, that reflex is probably retained. The exercise will be less uncomfortable as the reflex integrates.

 

I'm very concerned about your statement about his non-compliance. This is not a small issue. It *is* possible or even common for 2E and homeschooled autism to get missed. You don't necessarily have a lot of other people seeing the behaviors, so the forms don't get filled out to get you the diagnosis. The dc is getting such high level of one on one, it gets missed. They present a little atypically you might say. If the psych is just glossing, it can get missed. In these kinds of kids, a later diagnosis is COMMON. The non-compliance you're discussing is huge to me so I'd be tackling that. You can google compliance drills. Is he on meds for the ADHD? If he's not, it's probably time to put that on the list. And you could consider bringing in help to get you a break and get him complying with more people. That will get you more people to fill out observation forms. Make sure you're using a lot of structure.

 

Vision therapy *can* be done with less frequent visits and more homework. It's definitely worth doing, and Lecka is right that convergence insufficiency is a strong point for VT. I would do the reflex work THEN do the VT. And yes, you'll probably see behavior and attitude changes with the VT. There's usually some EF work built in. You can do Heather's metronome work. 

[Heathermomster]

Don't go crazy trying to discern what may or may not be. You know he is dyslexic/dysgraphic with vision and some behavior. At this point, it is a matter of checking off and eliminating possible causes.

 

A competent OT can check reflexes in under 10 minutes and settle the matter. Issues with copying from the board are sometimes attributed to visual accommodation. Developmental motor affects visual accommodation, or so I was told.

 

Eta: Not that it matters, but I see positives in your situation. If your child requires OT, you can incorporate the exercises into his regular activity plan. Maybe get his coaches to incoporate the movements.

Edited January 31, 2017 by Heathermomster

[PeterPan]

Hahaha, took about 40 minutes with my ds, and we got through like 3 of the reflexes. But my ds was having a really off the charts hyper kind of morning, lol.

[mamamoose]

You don't checklist for retained primitive reflexes, mercy. There are tests for every reflex, the actual reflexes. If you go to someone who's really, really good with them, they'll even score them with numbers for degree of retention. You can look on youtube for the tests.

 

Basically, you'd *like* to find an OT or PT who's really good with retained reflexes, get those checked and then do the VT. That's your ideal world. Sometimes chiropractors have training in retained reflexes. Or try youtube. Or use youtube and just do all the exercises. My ds is extremely athletic (team gymnastics, swim team, soccer, tennis, etc.) and he had retained reflexes. Your ds very well might. So just do all the exercises for a month, see what happens. Costs you nothing. Just look on youtube and work through the lists, being very attentive to form. If something is really irritating, that reflex is probably retained. The exercise will be less uncomfortable as the reflex integrates.

 

I'm very concerned about your statement about his non-compliance. This is not a small issue. It *is* possible or even common for 2E and homeschooled autism to get missed. You don't necessarily have a lot of other people seeing the behaviors, so the forms don't get filled out to get you the diagnosis. The dc is getting such high level of one on one, it gets missed. They present a little atypically you might say. If the psych is just glossing, it can get missed. In these kinds of kids, a later diagnosis is COMMON. The non-compliance you're discussing is huge to me so I'd be tackling that. You can google compliance drills. Is he on meds for the ADHD? If he's not, it's probably time to put that on the list. And you could consider bringing in help to get you a break and get him complying with more people. That will get you more people to fill out observation forms. Make sure you're using a lot of structure.

 

Vision therapy *can* be done with less frequent visits and more homework. It's definitely worth doing, and Lecka is right that convergence insufficiency is a strong point for VT. I would do the reflex work THEN do the VT. And yes, you'll probably see behavior and attitude changes with the VT. There's usually some EF work built in. You can do Heather's metronome work.

Well goodness, my apologies! The checklist came up first or second so I assumed it may very well be a good way to determine whether there was significant reason to assume there might be retained reflexes. We took similar tests to determine whether further dyslexia testing might be beneficial.

 

He has been seen by two neuropsychologists, and my aunt is a neuropsychologist--neither think he could be autistic. He has also been in public school.

 

He is not on meds for ADHD, and all of his doctors and his psych (as well as my aunt) think learning is causing the ADHD. He is reacting to difficulty in his surrounding rather than vice versa. Now, they could all be wrong, I'm not suggesting that's not possible. But there again, my resources are very limited living where I live.

 

The suggestion for bringing in more people is almost laughable. I live in a community with 60 other people. The next nearest community is 70 miles away and has a small clinic, an ER, and a grocery store. There is no medical care there at all for anything but the basics. The next care is 200 miles away.

 

What is 2E? What how would that get tested?

 

It would be helpful to know which YouTube videos to check out. There is so much to shuffle through.

Edited January 31, 2017 by mamamoose

[PeterPan]

Your sig says 2E. 2e=twice exceptional. Could be gifted with disabilities or other combinations. 

 

That's sorta weird to diagnose ADHD if it's not ADHD. I mean, doesn't that seem strange to you? If they just mean he's depressed or anxious because he has SLDs, well then fine let them put that on the paper. I've had my kids to lots of psychs and other kinds of practitioners, and there's actually a big movement away from meds. For all the talk of oh everyone pushes meds, actually it's JUST THE OPPOSITE!! With both of my kids I had the "Oh, they're doing fine, don't do meds" thing. Got that from psychs, etc. etc. And really, if you can avoid meds, fine, great, dandy. Like I'm really ALL FOR going as far as you can without meds!

 

Your sig says he's ADHD with SLDs and 2E and you're saying he's non-compliant. Have you thought about trying caffeine? In teeny tiny doses it would give you a *partial* sense of what benefit the ADHD meds would give. Sometimes the meds slow down the impulsivity and bring behavioral control more into reach. It's also common, even with an "only ADHD" diagnosis, to benefit from some Social Thinking work. You can go to the SocialThinking website and get some materials to use with him. They're age-appropriate, fully scripted, colorful, and engaging. They'll work through ideas like group plan, people having feelings about our actions, etc. It will give you common language to work on some of the thought processes underlying the non-compliance.

 

What do you mean "learning is causing the ADHD"? You mean the way you are schooling him is causing the ADHD? That his environment is not structured enough? That he's stressed or anxious and responding with hyperactive or dysregulated behaviors? That's just such an odd thing to say. ADHD isn't diagnosed for behaviors in one setting. It occurs across settings. It typically involves significant executive function delays. There should be stuff there for you to work on.

[mamamoose]

Your sig says 2E. 2e=twice exceptional. Could be gifted with disabilities or other combinations. 

 

That's sorta weird to diagnose ADHD if it's not ADHD. I mean, doesn't that seem strange to you? If they just mean he's depressed or anxious because he has SLDs, well then fine let them put that on the paper. I've had my kids to lots of psychs and other kinds of practitioners, and there's actually a big movement away from meds. For all the talk of oh everyone pushes meds, actually it's JUST THE OPPOSITE!! With both of my kids I had the "Oh, they're doing fine, don't do meds" thing. Got that from psychs, etc. etc. And really, if you can avoid meds, fine, great, dandy. Like I'm really ALL FOR going as far as you can without meds!

 

Your sig says he's ADHD with SLDs and 2E and you're saying he's non-compliant. Have you thought about trying caffeine? In teeny tiny doses it would give you a *partial* sense of what benefit the ADHD meds would give. Sometimes the meds slow down the impulsivity and bring behavioral control more into reach. It's also common, even with an "only ADHD" diagnosis, to benefit from some Social Thinking work. You can go to the SocialThinking website and get some materials to use with him. They're age-appropriate, fully scripted, colorful, and engaging. They'll work through ideas like group plan, people having feelings about our actions, etc. It will give you common language to work on some of the thought processes underlying the non-compliance.

 

What do you mean "learning is causing the ADHD"? You mean the way you are schooling him is causing the ADHD? That his environment is not structured enough? That he's stressed or anxious and responding with hyperactive or dysregulated behaviors? That's just such an odd thing to say. ADHD isn't diagnosed for behaviors in one setting. It occurs across settings. It typically involves significant executive function delays. There should be stuff there for you to work on.

Goodness! That's what I get for typing on my phone and trying to teach school at the same time! I was in and out trying to edit that post and it got pretty messed up. 

 

So, I was told that his ADHD is a *reaction* to learning issues, in much the same way anxiety could be, or in much the same way vision can affect an ADHD response, as in they are co-morbid but its hard to discern which is the cause and which is the effect. Now, I have no idea, maybe his doctors and therapists have missed the boat and I'm just naive enough to believe it, but I understood it to be like the chicken or the egg, kwim? And I was told by the psych he was gifted, in that he has a really high IQ (which is actually in line with my family, including me), but because he has executive function issues, he can't use that gift to the best of his ability. So, the psych told me he was 2E...I meant to ask how could that be missed at home and how would we actually test for that. I'm not sure what you mean by "homeschooled autism" either. 

 

As an aside, and this came to mind this afternoon while on our drive for groceries and to the eye doctor, my grandfather was a very strange man. He had an IQ in the 145-160 range, but of course in those days testing was much different. He was an entrepreneur and taught him self how to play the violin and the piano by ear. He was sociable but strangely so and could not read other's emotional cues. He appeared very self centered but if you pointed out your feelings and he had hurt them, he was sorry and empathetic. I don't know that he had Asperger's and don't know for sure what that looks like, but that would be my "couch psychologist" diagnosis of him. No one, ever, considered my grandfather normal, by any stretch of the imagination. My son appears normal to most people, and he had his teachers completely convinced he was reading words he wasn't reading at all, because he hears a book one time and has it memorized. I'm not sure why I think this information is valid except to say that he's nothing like my grandfather. He can be very...callous...though, and I do frequently wonder why he doesn't recognize that he has hurt his sister's feelings. He even acted out at the psychologist's visits and clammed up and refused to comply but it didn't seem to catch the attention of the doctor in those instances any more than it caught mine. Maybe i need to ask him point blank???

 

I am also really against medicating. I know at least 10kids with add who were on medication and became drug addicts early in their adult life. Maybe its because I live in the "meth" zone in Montana, or maybe its the meds, but I surely don't want him taking any unnecessary medications. I don't know many kids who were medicated who became successful adults...so maybe my bias is rubbing off on the people surrounding me. However, I emailed my aunt asking if I was making a mistake by not medicating and feeling like I was ready and she said, "It makes drug addicts out of kids, and adds the extra burden of them figuring out how to 'come down' from their medications mid-day." So...I am very very leery.

Edited February 1, 2017 by mamamoose

[Heathermomster]

Op,I'm on my phone.. Is your son hyper or primarily inattentive?

[PeterPan]

If you have time to look at the Social Thinking site, they have materials for what you're talking about. You can use them irrespective of label. The social thinking materials will benefit ADHD, ASD, gifted and just missing things, you name it. There's also a book, Bright Not Broken, that explores this who issue of the overlap of gifted, ASD, and ADHD. 

 

Did your psych run any pragmatics testing? There are actual tests for pragmatics, so you can quantify where he's at relative to his peers. He's 9. When kids are young, the results aren't so reliable because the scores have to be so minimal to hit "normal" range. But as you get into that age 10-12 range, tests like the Social Language Development Test (which an SLP can run for you) can be very useful. Google for the subtests and see what you think. Might be worth the effort on your part to find someone to get it done, since it would answer questions you have and give you concrete data on what areas to target. 

 

Or just get the Social Thinking materials and use them :)

 

ASD now has levels 1-3, so when you're looking at ASD 1, yes it's going to be pretty discrete. My ds is right on that line, ASD1, moving toward ASD2. A lot of people meet him and think no way, then they spend an hour with him and get on board. But really, you're totally correct that you DON'T have to push over to an ASD diagnosis to have benefit from social thinking help. Irrespective of the label, social thinking materials can be very useful. If you don't have ASD and a need for ABA and serious, serious help, it might be that the increased awareness through the social thinking work would be enough to help him come to the other side and have more perspective on his behaviors and how others feel about his behaviors.

 

If your psych didn't have you and others complete any actual ASD survey forms, then you haven't actually answered the question of ASD. There are forms that can distinguish ASD from other similar issues. For us, it took a separate eval with a psych specializing in ASD. There can be reasons to decide to do that or reasons you decide you don't want to at this time. Either way, it sounds like he would benefit from social thinking materials.

 

I'm a huge holdout on ADHD meds, so I'm not going to minimize or downplay your concerns. However as someone who IS extremely, extremely concerned about the meds myself, I will say it seems odd to blanket them all together. Some of the new pro-drugs, like Vyvanse, link the meds to break down only with enzymes. You can't get high off them, can't insufflate or abuse them. Even your friend's comments about coming down mid-day are just out of date. People are using extended release meds. There IS a lot of data about the dangers. I'm just saying this is something you could get data on for yourself. There are studies about drug abuse rates among these populations. We've linked some of the research in previous threads on the board. I'm ALL FOR social thinking instruction, but it's also true that sometimes when you put them on meds the kids just flat start noticing more. 

 

I mentioned caffeine. The amounts you need to use for that are teeny tiny. Caffeine reduces Attention Deficit Hyperactivity Disorder (ADHD) - DrClydeWilson's NUTRITION BLOG  This is the article I used when trying it with my dd. It's something like 10mg per kg of body weight. We're just talking *small* amounts here. And people gloss their caffeine addictions all the time, all while being upset over kids addicted to other drugs. But the amount of caffeine we're talking about here isn't addictive either, because it's so small. The caffeine won't be a *complete* effect, but it would be some, enough to let you say wow that's really a good effect here.

 

I'm just trying to let you see options. I know it's hard stuff. With my dc, my approach has been to do EVERYTHING else first. So like you're saying you have social thinking issues, and I'm saying do the social thinking materials, see if that helps. That kind of thing. I'm totally there with you that there's a LOT that can be done. And maybe while you're doing those things you can research the meds for yourself and learn about the dispensing mechanisms on some of the new drugs, since what you've been told is kind of out of date.

[mamamoose]

Op,I'm on my phone.. Is your son hyper or primarily inattentive?

Hyper--in fact I don't find his attention to be as much of a challenge as pinning him down for a subject. My first grader could be ADHD too, for all I know, but she seem less attentive than him. She does not struggle with school at all, though.

[mamamoose]

If you have time to look at the Social Thinking site, they have materials for what you're talking about. You can use them irrespective of label. The social thinking materials will benefit ADHD, ASD, gifted and just missing things, you name it. There's also a book, Bright Not Broken, that explores this who issue of the overlap of gifted, ASD, and ADHD.

I will definitely check out the website. This will be helpful for everyone I would think.

 

Did your psych run any pragmatics testing? There are actual tests for pragmatics, so you can quantify where he's at relative to his peers. He's 9. When kids are young, the results aren't so reliable because the scores have to be so minimal to hit "normal" range. But as you get into that age 10-12 range, tests like the Social Language Development Test (which an SLP can run for you) can be very useful. Google for the subtests and see what you think. Might be worth the effort on your part to find someone to get it done, since it would answer questions you have and give you concrete data on what areas to target.

I don't know but we have an appointment the 13th.

 

ASD now has levels 1-3, so when you're looking at ASD 1, yes it's going to be pretty discrete. My ds is right on that line, ASD1, moving toward ASD2. A lot of people meet him and think no way, then they spend an hour with him and get on board. But really, you're totally correct that you DON'T have to push over to an ASD diagnosis to have benefit from social thinking help. Irrespective of the label, social thinking materials can be very useful. If you don't have ASD and a need for ABA and serious, serious help, it might be that the increased awareness through the social thinking work would be enough to help him come to the other side and have more perspective on his behaviors and how others feel about his behaviors.

So what does it LOOK like at level 1?

 

I'm a huge holdout on ADHD meds, so I'm not going to minimize or downplay your concerns. However as someone who IS extremely, extremely concerned about the meds myself, I will say it seems odd to blanket them all together. Some of the new pro-drugs, like Vyvanse, link the meds to break down only with enzymes. You can't get high off them, can't insufflate or abuse them. Even your friend's comments about coming down mid-day are just out of date. People are using extended release meds. There IS a lot of data about the dangers. I'm just saying this is something you could get data on for yourself. There are studies about drug abuse rates among these populations. We've linked some of the research in previous threads on the board. I'm ALL FOR social thinking instruction, but it's also true that sometimes when you put them on meds the kids just flat start noticing more.

 

I mentioned caffeine. The amounts you need to use for that are teeny tiny. Caffeine reduces Attention Deficit Hyperactivity Disorder (ADHD) - DrClydeWilson's NUTRITION BLOG This is the article I used when trying it with my dd. It's something like 10mg per kg of body weight. We're just talking *small* amounts here. And people gloss their caffeine addictions all the time, all while being upset over kids addicted to other drugs. But the amount of caffeine we're talking about here isn't addictive either, because it's so small. The caffeine won't be a *complete* effect, but it would be some, enough to let you say wow that's really a good effect here.

 

I'm just trying to let you see options. I know it's hard stuff. With my dc, my approach has been to do EVERYTHING else first. So like you're saying you have social thinking issues, and I'm saying do the social thinking materials, see if that helps. That kind of thing. I'm totally there with you that there's a LOT that can be done. And maybe while you're doing those things you can research the meds for yourself and learn about the dispensing mechanisms on some of the new drugs, since what you've been told is kind of out of date.

I guess I should do some more research. Where do I start?

Edited February 1, 2017 by mamamoose

[mamamoose]

And my quotes got all messed up in that response. Slashes were the wrong direction--think I fixed it!

Edited February 1, 2017 by mamamoose

[mamamoose]

And it's just too much to process. Honestly, it feels overwhelming--like why isn't one diagnosis enough?!

[kbutton]

Some possible books (all informative, not all necessarily exciting, lol!):

 

https://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707677 (Warning that it's getting dated)

https://www.amazon.com/Smart-but-Scattered-Revolutionary-Executive/dp/1593854455  (Very, very highly regarded book)

https://www.amazon.com/Different-Minds-Children-Asperger-Syndrome/dp/1853029645  (Dry as dust, but VERY informative and helpful--it compares and contrasts ADHD, ASD, and combinations of issues in gifted kids. It's geared to the older diagnostic criteria from DSM IV, but Asperger Syndrome is now basically ASD 1.) 

 

The third book is really, really good. It has a lot of real-life examples to flesh out what different kinds of kids look like who are 2e with ASD, ADHD, NVLD, etc. 

[mamamoose]

So I watched some videos about reflex testing and he most definitely has retained palmar reflex, and it's pretty strongly retained (no clue if that terminology is even close to correct😅), as in he grabs much like an infant. This would most definitely inhibit his fine motor skills, right? As for the others, if he has them I tested incorrectly or he has them mildly because nothing was obvious. So I guess I try some stuff at home right? Or get him into an OT immediately? Or what?

 

Also, we tried coffee today. He drank a cup of coffee with cream. We don't have soda in the house and I am 60 miles from a store, so that was the best I could do for caffeine. I did notice some difference with his compliance. As in he was very non compliant and not going to do school and causing the entire house to have issues, and he had coffee and became tolerable and completed all his school in half the time of normal, but he was still impulsive and whistling and tapping. He went to my mom's for the afternoon and when I picked him up he was off the charts with his obnoxious behavior much like he had been prior to the coffee. I will try it again tomorrow I guess.

Thank you for the book recommendations.

[Julie of KY]

 

He is 9, and technically in 3rd grade. I suspected dyslexia by 1st grade but could get nowhere with the school as far as testing because he was still "passing" and tested in national tests as "average." My oldest was reading at a 3rd-4th grade level by the end of 1st grade and he seemed just as bright so it seemed odd that reading would be such a struggle. He HATED it--his eyes hurt, he read words backwards, he skipped words, he lost his place, he could NOT write a sentence to save his life and all his letters were different sizes. He couldn't remember what a letter even looked like without some kind of visual reference in front of him. BUT, he memorizes Bible stories and his comprehension for stories read to him is very high (higher than either of his sisters).

 

Many kids with convergence insufficiency are diagnosed with reading disorders. Some actually are dyslexic, others just need their eyes to work together to take away the effort required to read. 

Vision issues can cause the eye pain, skipping words, losing the place as well as issues with letter size in writing.

 

The school kept telling me it was his eyes and I agreed but also felt like there was something more to the story. I had his eyes checked 4 different times by 4 different doctors and he got reading glasses but half of the docs said he really didn't need them. I noticed that one of his eyes would flutter when he was tired but they told me that should not affect him. 

 

So often other doctors will never pick up convergence issues as they are checking visual acuity.

 

 

Then, he started archery and said he was seeing double when focused on the target. He has always complained of words moving on the page, seeing double while reading, and his eyes itching/burning/aching while reading.

 

All of this sounds like convergence insufficiency problems.

 

And what do I expect with vision therapy? It's a lot of work but the end result was that my kids could read without tiring, more fluent readers, better handwriting, and overall much able to tolerate more schoolwork.

 

I've read your initial post and skimmed the rest. I just wanted to say that so many of the things that you describe sound like they could be helped with vision therapy. Anyone that is expending extra effort to "work" to make their eyes focus together will have less tolerance to be compliant. It does sound like you may be dealing with other issues as well, but I'd certainly pursue the vision therapy.

[mamamoose]

I agree...and I rarely ask him to read but today he offered. Three sentences in he was rubbing his eyes and squinting and closing one eye. We are definitely pursuing vision therapy.

[kbutton]

Palmar is often present because Moro is present. I have kind of heard informally that Moro is the lynchpin reflex, actually.

 

This page on Moro is interesting--I have never seen these particular tests for Moro: http://ilslearningcorner.com/2016-01-primitive-reflexes-a-child-in-constant-fight-or-flight-mode/

 

Half of the description on that page was my son prior to VT. It's interesting to me how many different combinations of things are attributed to Moro--that page is closer to describing my son's issues than other pages were. The page is rather new to me, but my son had a profoundly retained Moro. It showed up with some tests and not others. He could not duck or pigeon walk with his hands facing the proper way, but he had to be kind of fatigued for it to be noticeable--then he was falling apart. 

 

This is the first place I remember seeing background noise issues being something that goes with Moro. Prior to VT, my son could not hear anything in background noise. (He also has an auditory processing disorder diagnosis.) The VT said that some practices actually work on auditory processing along with vision.

 

Anyway, it's a field where there is not always consensus on the particulars. You might find that one site is much more helpful than another.

[PeterPan]

I agree that if you have Palmar, you probably have a lot more retained reflexes. You probably just aren't skillful at your testing. Your safest bet is to assume they're all there and pick 2-3 reflexes at a time to work on using exercises. Then, if/when you get an OT eval, they can screen to see which ones have integrated and which you still need to work on.

[mamamoose]

I agree my testing is obviously lacking. So do I find an OT? Is that the direction I go? How do I tell him? He feels like a guinea pig already. :)

[PeterPan]

Well I have yet to go to an OT who turned out to be REALLY good at reflexes. They either have no training or spartan little. I'm so cynical at this point, I'd recommend just looking them up on youtube and being really nitpicky thorough. Our current PT spends quite a bit of time on each one, asking about the symptoms they create or symptoms during the movement, really looking at how the movement is done and little details. Like say she does the cheek stroking and he doesn't totally flinch. Well fine, but I know he does other times, and when she asks he says it's very irritating. That to her is enough to say work on it. 

 

To this PT we're using now, there are degrees. Like we realized we had a reflex integrated on ONE side and not the other! She scales everything as 1-3. So that's why I'm saying better to just pick some, do the exercises, better safe. Won't hurt anything and you might catch some.

 

The more providers I use, the more cynical I get, unfortunately. :(

[PeterPan]

Pyramid Of Potential - The Solution For Learning Challenges - Primitive Reflexes The PT we're using likes this place. Haven't used it myself. They do have dvds.

[mamamoose]

I can't find any exercise--they all want money and I don't have any!

[mamamoose]

I will try exercises. Our insurance pays for OT and PT so that's a better option than fiddling around trying to find the right exercises.

[mamamoose]

By the way, would his neuropsychologist know about RPR? Can he test?

[kbutton]

I wouldn't have an NP do it. I have heard good things about E's link as well. I would try a PT first. 

 

The testing is tricky--it's not necessarily you or your method. An OT and PT working together from the school (using testing methods from Pof Potential materials) and our VT caught some of the same things and some different things.

[mamamoose]

The local school doesn't have any of that. Literally he would get 30 minutes of tutoring once a week...and if I pushed for more they would bus him 68 miles for school, and even that school has limitations.

[PeterPan]

Take the list and google each name and look on youtube. You can usually find instructions. They key is to slow down the exercises and be very attentive to form. They're hard for my ds, so he'll go into hyper mode and rush. :(

[mamamoose]

Take the list and google each name and look on youtube. You can usually find instructions. They key is to slow down the exercises and be very attentive to form. They're hard for my ds, so he'll go into hyper mode and rush. :(

What list?