Challenges?

[Mommybostic]

OhElizabeth--he's actually a good speller, and now that we have started WWTW, he seems to be improving, and he likes the Mystery Spelling, where he tries to apply the stems he's learning. As far as reading, when he does read something, he can TELL me a very good narration and answer any question I ask. But when he has to write a narration, look out.

 

So, in short, I don't think his vision is an issue, though I will be on the watch. However, the muscle thing, now that I don't know about. Since he will never read this, I will go on record and say with all love that he is rather klutzy, and his hand-eye coordination is quite poor. Only this very fall has he finally started to "grow iinto his body," as my grandmother says, and he gaining speed, strength and accuracy in his physical acitivities. I see some kids his age, and they fascinate me! The way they can practically climb right up the side of a building is so impressive! My son tends to have self-esteem issues about physical things--he says, "I'm the slowest," or "I'm not very strong!" He's very tall and thin for his age, though now the girls are catching him, as they tend to do in middle school.

 

I do notice he is what I would consider behind with fine motor stuff. He prefers velcro tennis shoes because he finds tying shoes to be tedious. What is writing but a fine motor skill? I don't think it's the content of writing, but the actual act of writing itself. I know a few OT's because of my daughter, and I know LOTS of fine motor exercises that I could slip in on him. Since he seems to be physically maturing finally, maybe some of the fine motor stuff will develop more in the coming several months as well, and as aggravating as it may be, I think practice, good posture, and more practice will certainly help.

 

It's funny to me that he is so physically immature and yet so emotionally mature. He can easily converse on an adult level and yet is very patient with small children. All of the little kids among our family and friends love him. His teachers have always commented on his kind and sympathetic nature, and I would say it is one of, if not his best, quality. Frankly, it's one of the reason I want him out of there--sometimes kids with that kind nature are the ones most easily crushed. We've been very fortunate so far that he's done okay, but you never know.

 

Thanks again. I absolutely have some things to think about and watch for with him. Because of all of my daughter's issues, I never really thought of him from that perspective! Sort of ironic, isn't it?

[PeterPan]

Yeah, the klutzy "Bambi" thing is how we thought of my dd. Then we realized it had words: apraxia, poor focusing and convergence, low tone. Didn't you say your one dd has issues? No reason to think your ds wouldn't, though possibly milder. Tone issues can be genetic. Strength and tone are two different things. Not every OT is keyed into these things. I drive an hour to get to one who does a lot of sensory stuff. Maybe your ds has none of that. In any case, if you're going to get him evaluated, I would do it with someone who is more experienced in those things, someone who comes with a recommendation. If you work with him yourself you can end up with what are called splinter skills. In other words he'll become really strong at the things you work on and not on the things you miss. That's why I'd go ahead and get a proper evaluation. No 5th grader should feel weak or klutzy for his age. No 5th grader should have his hand hurts when he writes. There are even programs like Callirobics and Interactive Metronome to help organize the brain and make the motor control part work right. But without a thorough evaluation (by someone who does a lot of sensory, apraxia, and tone stuff in kids, not just treating stroke victims all day), you won't know what all you're dealing with.

 

So yeah, I'd go ahead and pursue an OT evaluation. Ours turned up stuff I hadn't been seeing clearly and connected dots on things I did NOT realize were connected. If he does have issues with tone, there can even be genetic reasons for it (mitochondrial problems, low carnitine levels, etc.), as in things that could be treated. The tying shoes thing could be finger strength or bilateral issues or... You just don't know till you get him evaluated. If he has bilateral brain function issues, an OT can work on that too. I had to go back and have my dd crawl. She would literally fall on her face when we started. It took EXTREME effort for her to do it properly, with cross body motion. She didn't start tying her laces for ice skating until this past year, and it was only in the last year or so that she got confident at riding a bike. Now each of these practitioners (VT, OT, etc.) will say it was their aspect that was at play with such and such, hehe. Point is, I wrote off a lot for a lot of years saying she was just Bambi. She's 99th percentile on height for her age, so it seemed sort of reasonable, kwim? But she wasn't. Get evaluated, that's my hindsite. The OT evaluation alone was liquid gold for us, totally changed my perspective on her, how to teach her, etc.

 

BTW, if you research Interactive Metronome and find an OT near you who does it, that would be a good way to find an OT. It will put you in the strain of someone who is evaluating a lot of kids like this. That's how I found mine, and then it turned out she was also recommended at my VT office, confirming I was on the right track. And sometimes an OT like that will send you to a VT if they see things. The OT will look at how their eyes function when the body is moved, etc. (saccades and other fancy words), and they can see if there are issues. The eyes get worked on both from the vestibular end (what OT's do) and the eyeball to brain end (what VT does). Even if you don't think you need Interactive Metronome, it's a good way to find a lead on an experienced OT.

Edited November 29, 2010 by OhElizabeth

[Mommybostic]

My daughter has severe issues, and low tone is a major one, but also cognitive stuff that puts her on the opposite end of the spectrum from her brother. That's why I never really thought of it. Here's a little tidbit that makes one say hmmm......my dad and I both were just like my son is now. Klutzy, not really very good athletes, but very bright in school, good comprehension. To be perfeclty honest, I can't remember if I liked writing or not. As an adult, I can type upwards of 90-100 wpm and I play the piano, but of course practice was the answer to that. I can only remember my grandfather making me sit and write connected loops inside the lines over and over and over and over......I don't think my hand hurt, but it sure was boring. I prefer typing now because I can type much faster than I write, which makes it easier to keep up with my thought processes (a little, anyway.)

 

Thanks for the info and I plan on looking into all of these things. We live in a very rural area and good OTs are hard to find. Even in the school system they are hard to find and keep. The ones that see my daughter seem nice enough, but as far as expertise, that remains to be seen!

 

If I pull him out of school, though, does the school system wash its hands of having to provide services? That's an interesting question. He also has a gifted IEP, and I know guidelines for following those are allegedly pretty strict, though our school system has quite a knack for finding the loopholes.

 

Time will tell, and I can just say I wish Christmas break would go ahead and get here.

[PeterPan]

Tone issues can be hereditary, so you might have a nice little lineage. People all find their coping mechanisms, and sometimes things express in different ways or to further degrees than others. The eyes operate with muscles, so often people with low tone will have vision issues too. COVD has a list of developmental docs you can sift through to find one for an evaluation.

 

I wouldn't rush the process too much. This one month gap is here for a reason. If you had him out today and didn't have your ducks in a row, you'd be floundering. Better to use this time to get appointments, sift through things, see what you're doing. It will all come together, soon enough. Good OT's take time to get into. Getting into that developmental optometrist evaluation wouldn't take as long.

 

I have no clue what the school will do for you. I wasn't willing to settle for whomever they picked, since I wanted this particular OT who specializes in it, does it all day, and is the most knowledgeable on it. Same with speech for my ds. I could have gotten an evaluation through EI, but the person would have had no clue about apraxia, no experience. But who knows, maybe you'd have a gem of an OT through your system?

 

When we went back to our ped to get the referral to the OT to have it count toward our insurance deductible, the ped said she wanted us to see a neurologist. Turns out there are metabolic and genetic causes of low tone. A neurologist will measure the extent of the tone issues and then pursue that genetic testing. There can be low carnitine levels, and carnitine is essential for fat metabolism, energy (ATP production), heart health, etc. So that whole issue of mitochondrial disease, etc. might be something interesting for you to pursue. We decided to approach it a different way and not do the neurologist thing, but that's just where they wanted us to go. Sometimes as you start to unravel things you get these aha moments of oh that's why he does such and such...

[Tiramisu]

Tone issues can be hereditary, so you might have a nice little lineage. People all find their coping mechanisms, and sometimes things express in different ways or to further degrees than others. The eyes operate with muscles, so often people with low tone will have vision issues too. COVD has a list of developmental docs you can sift through to find one for an evaluation.

 

Thank you for this post. We will be taking dd10 for an eye exam because of some little things we've been seeing lately. She's has mild hypotonia, but I wouldn't have thought about the connection or mentioning to the doctor it if it weren't for your comments here.

:grouphug:

[PeterPan]

Kelli, just so you know, a regular optometrist may TOTALLY MISS anything beyond basic 20/20 stuff. You have to go to a developmental optometrist (which you can find through COVD) to get a more detailed exam. The regular doc just said my dd's reflexive focusing was slow and offered reading glasses. The reading glasses so exacerbated the convergence and focusing issues that we went from some problems and headaches to through the roof problems and headaches. Of course at that point we were willing to do anything the more detailed doc would say, lol. 6 months of therapy later, we're finally almost done.

 

Yeah, it's lots of little things. The main thing is, take her to a developmental optometrist if you think it's anything beyond 20/20. My dd could pass a 20/20 test with flying colors. Thing was, she saw fuzz all the time and had to CHOSE to what to strain and bring into focus. Ouch. She never realized that wasn't normal. (Actually, they say it's normal, but not to the DEGREE to which she had to pull things into focus and not the amount of strain it created.)

 

BTW, I read an article online somewhere saying that by mid-20's the majority of people with mitochondrial problems (low carnitine, low tone) would have some sort of opthamalogic issue. I suspect if I were thoroughly checked that my peripheral vision isn't right, since my dh says I have to turn way too far when driving to see the blind spots. So sometimes things are there and it's a matter of degrees. We don't even realize what we see isn't normal until someone compares us to a standard. And back to the heredity, you might look back and find a trail of strange eye issues. My grandmother had a retina detach. My aunt has NO peripheral vision. Stuff like that. You just start to notice curious patterns.

Edited December 1, 2010 by OhElizabeth

[wapiti]

Kelli, just so you know, a regular optometrist may TOTALLY MISS anything beyond basic 20/20 stuff. You have to go to a developmental optometrist (which you can find through COVD) to get a more detailed exam.

:iagree: That's what happened to us (ped opthamologist missed it completely; two months later we saw the developmental optometrist, who found dd's tracking issue and fixed it via vision therapy; also, FWIW, dd has mild hypotonia, which I had forgotten about)

[PeterPan]

Bingo. Even an opthamologist is different. It's a developmental optometrist through COVD that you want. They're golden.

[Tiramisu]

Bingo. Even an opthamologist is different. It's a developmental optometrist through COVD that you want. They're golden.

 

I contacted an FCOVD's office (The F means he's a FELLOW)--right in our town!!!--and made some inquiries. I was told that people don't go him directly, but first to an optometrist. (They don't recommend opthamologists.) I wanted to know the name of someone they would recommend, and said we usually go to so-and-so. They said so-and-so is excellent and they get a ton of referrals from him. And, he's part of our insurance plan.

 

I don't know if this is an issue or not because before this soccer season, I never noticed anything unusual about this dd's vision. Perhaps this is nothing or something that I never picked up on because of more serious issues getting my attention. Reading all the posts about vision therapy got me thinking...mild disgraphia (that seems to be improving since her spinal surgery ???), a disinclination to read books with small text in an otherwise voracious reader, low tone & thick glasses in dh's family, who knows.

[PeterPan]

Sounds awesome! Yes, the VT at our office told me the best way to find a good doc in another town was to look for a fellow in COVD. Well keep us posted on what they say! Dysgraphia, such an interesting thing. We're doing OT as well. The VT made a TREMENDOUS difference in her handwriting. Frankly we haven't been doing enough formal schoolwork this semester to know what change it will make on her actual output. We've lost 2-3 days a week driving to therapies! It will be really nice to be down to 1 1/2 next term and actually have some time to work together and see what her new eyeballs can do. :)

 

Guess I wasn't very clear there. I'm saying I don't know what connection eye function and processing have on the output. My hope is what I'm going to find, as we ramp things back up, is that her output is much easier now that her actual vision and processing has improved.