Wednesday, September 05, 2007

Helping Isaac

I took my son in for an evaluation with the local school district today, to see whether he would qualify for special services to help him with his Sensory Integration Disorder. In addition to causing some severe eating issues, Isaac's SID has interfered significantly with his motor skills development.

During the testing, Isaac scored a full two standard deviations below average in gross motor skill development, a clear deficit. This score puts him in the bottom ten percent of kids his age for gross motor skills. Mind you, this is how he scored even AFTER a year and a half of occupational therapy.

I honestly wasn't unduly upset by this score. I expected this type of score. My son didn't walk until fifteen months, and didn't run frequently until he was almost two. He didn't start jumping, or standing on one foot, until just a couple of months ago, and that was with the intervention of his occupational therapist.

He is terrified of heights. He won't climb ladders. He clings to the rail when he goes up and down stairs. He refuses to go down the slide at the playground, even if we lift him up so he doesn't have to climb-- even if I go down with him. Whenever he does any activity that challenges his sense of balance, he becomes utterly terrified that he is going to fall.

Isaac's OT calls this issue a "motor planning deficit" heightened by "gravitational insecurity."

I personally call this issue: "Sweet merciful heavens, if we can't at least teach this child how to go at least down a slide without screaming in terror by the time he turns five, he is SO getting his ass kicked at the playground on the first day of school. Not to mention the fact that if I can't teach him to kick properly, jump properly, or hop on one foot, he will never learn to enjoy sports, and will spend the rest of his youth getting picked last for every sports team and constantly trying to duck out of PE with forged doctor's notes. And all of this is really starting to sound disturbingly familiar in relation to my own clumsy childhood. So, if it's at all humanly possible, I would really, really like to get this child a little more professional de-klutz-ification help, mkay?"

More help than my health insurance company is willing to provide even grudgingly, no matter how many letters from doctors I send them.

So, to tell you the truth, I was maybe even a teensy bit relieved that my son scored so low on this gross motor skills test. Getting a score as low as he did on this motor skills test is the statistical equivalent of scoring a 70 on an IQ test. If a kid scored a 70 on an IQ test, you would expect the school district to offer him some extra help, right? So, if a kid scores a 70 on a motor skills test, one might imagine that the school district would be willing to provide some help there, as well, right?


On the verbal development test, my three-year-old scored as a five-year-old.

He knew what day of the week it was.
He knew the names of the seasons.
He knew not only the word for telescope, but also what a telescope is for.
("He knew what a telescope was!" exclaimed the smitten speech therapist. "Would you like to give me the test, Isaac?")

And, well, there's also the fact that . . . he can read. About 40 or so words, last I counted.

Now I have a test for you: What does gifted plus delayed equal, in the eyes of special school district funding?


We were denied physical therapy assistance from the district.

I'd like to see my son eat words for lunch.

I'd like to see him read his way up a ladder, and down a slide.

I'd like to see him overcome his fear of fingerpaints with the definition of the word "telescope."

But, for now, I'll keep taking him to the library each week, and I'll keep watching proudly as he reads board books to the other preschoolers at story time.

And I'll keep taking him to the playground, and I'll keep praying each time that this will be the day he'll make it down the slide.


Awesome Mom said...

That stinks so much!!!!!

Nap Queen said...

That blows. I'm sorry :( I had about 3-4 kids with varying forms of SID in my preschool classes, and I know how frustrating the lack of help must be.
I do think it's pretty rad that he's so smart.

the mad momma said...

oh my God... this is such bittersweet news that I don't know how to react. God bless the bright little boy. I am sorry he doesnt get state help but if the trade off is a little genuis child, take it with open arms and thank God. Hugs to the two of you. I am sure the sensory issues will only last a little while more - but his brilliance is for a lifetime... chin up and face the sunshine.

Jaelithe said...

Indeed, Mad Momma, I need to always keep in mind that I have been blessed with the child I have. And I hope it isn't too obvious that I am thrilled he is so smart, hehe.

But it just seems so backward to me that his gifts in one area are actually preventing him from getting help for a real delay in a completely unrelated area. If he had scored normally on the verbal test, he would have qualified for physical therapy help from the local public preschool. It was only his advanced score in the verbal section that made him ineligible for help in a totally different area.

This also reminds me rather uncomfortably of when I first started asking doctors whether my son's eating problem might be related to some sort of neurological disorder or developmental delay, and the first three I talked to all said, "But, how could he possibly have any neurological disorders or developmental delays? He talks so well!"

This prevented us from getting a proper diagnosis for a whole six months. I can't help but think if my son had not been able to speak so well at an early age, he would have gotten much better medical help with his eating problem much sooner.

Farrell said...

that was an awesome post i.e. well written and also i've only very recently heard of SID.
it doesn't make sense though, like you said, because the two areas are completely unrelated.
but omig your son is 3 and can READ? holy sh*t. how'd that happen?
hang in there.

Farrell said...

PS: my favorite part is:
I'd like to see my son eat words for lunch.

I'd like to see him read his way up a ladder, and down a slide.

I'd like to see him overcome his fear of fingerpaints with the definition of the word "telescope."

Bea said...

So stupid and frustrating. And weird, too - because an advanced vocabulary combined with poor motor skills is a classic recipe for Asperger's - a disorder which DOES require intervention. I don't get the impression that Isaac fits the profile for Asperger's, but any child who did would fall through the cracks in precisely the same way.

Unknown said...

I am so sorry you all didn't qualify, it just doesn't make any sense to rank things as a whole. We went through something a little bit similiar, when my son went to the SSD for speech issues. He did all of the physical tests so well, and the math and letter recognition skills were so far above average that it apparently didn't mean anything that no one understood (except for us) what the heck he was saying and that he still drooled and wouldn't eat solids at 3.5 years old. He was considered delayed in speech but since everything else was fine we were out of luck. They said to bring him back every 6 months until he was able to be labeled as significantly delayed. Did they tell you to do this? Good luck and just keep doing what you are doing!!!

JessiTRON said...

gravitational insecurity!

Why, why, does the public school system have to quantify every child down to just one number?

Jaelithe said...

I thought of that too, Mrs. Bub and Pie. If Isaac didn't have such good social skills, he'd definitely be a candidate for Asperger's screening. I wonder how many Asperger's kids in my school district have failed to qualify for treatment?

The people in charge of the test completely believed that my son had sensory issues, too (it's not that difficult for an experienced professional to deduce after spending a little time with him). But they told me they had to abide by the district guidelines, under which children with a composite test score above a certain level simply cannot qualify.

Anonymous said...

What frustrating red tape! I hope a better situation presents itself. Leave it to a beaurocracy to lump everything down to one number and try to fit the round pegs into square holes.

Isaac is a special little boy, and he has pretty special parents, too. I for one am not surprised by his smarts given his genetics, and I have a feeling that you guys will find a way.

Lisa said...

You know, Seth is 5 and he still doesn't move his arms when he runs. He looks so dorky. He's in soccer and can run faster than most of the kids but he still can't coordinate his arms to move WITH his body. And he gets tired of running sooner than the others. And yes, even though we worked on alot of stuff (his is more fine motor and we work on that almost daily.) there are still "tells" here and there regarding his SI.

You know, Seth was scared of EVERYTHING at that age too. Now, we're looking into an indoor swim facility so Seth can swim year round... So he learns to coordinate all of those muscles with different swim strokes...

But I understand how frustrating it can be when you aren't getting any help. At least they could direct you to a support group or SOMETHING.

R said...

Wow. Jaelithe, can I just apologize for the sorry state of our public schools? Although, I worked at an elem. school last year. . . and what you just had happen would have been unacceptable to them. It is such an uphill battle when you are the ONLY advocate your child has, when you have to battle against the school district that is supposed to be working with you, is supposed to be on your child's side, is supposed to be there to help in his success. And yes, you're right, if Isaac could just start to be a little less socially aware and get a dx for asperger's, all the services in the world would be yours. That blows.

Linlee said...

I just don't get it. You would think the schools would help!!! That's what they are SUPPOSED to do! I'm sorry your going through this.
A friend of mine has a child with severe food allergies and the school is not helping her at all either.

Anonymous said...

This was your first post that I've ever read and it was beautifully written. You'veprobably looked into this, but does your county offer any services? Sometime that's another avenue.

Ruth Dynamite said...

Keep pushing for whatever services you think he needs, Jaelithe. He'll get there in due time, no doubt. You hang in there.

Debbie said...

Jaelithe, can I just tell you how amazed I remain every time you report what's happening with Isaac, both the genius-y bits and the frustrating, teeth-grinding parts? And how you manage it?

I've come to the following conclusion: You are made of patience. Made of it. Spun of soft gold and humor and love and tender patience.

Isaac could not do better for a mom.

Anonymous said...

Hi! I clicked over from Bub & Pie.

My firstborn was the same with his physical development (plus had speech delays and drooling), and then, like your son, got "kicked out" of the program for doing too well on mental tests. (They had us take him to a neurologist to test him for Asperger's first, because unlike your son, he also had social issues.)

After I PITCHED A FIT (I hope it's understood that the pitching was IN MY HEAD, and that outwardly I was all disgusting and meek), I found out this: it's that the school considers its job to be mental education. (They do teach PE and health and so on, true. But those are considered cut-able programs, unlike, say, math. And they don't, for example, do physical therapy in the classroom. THAT kind of thing.) And so if the physical is AFFECTING the mental, they help--because they have to make it so that all kids can learn, and so if physical problems are preventing learning, they have to fix the physical. But otherwise, it's not their job. I guess I can see that. It still SUCKKKKKKKKKKKKKED.

My firstborn is now a 3rd grader, though, and although he'll never be an athlete, I've been tremendously relieved to find that the kids don't seem to notice or to tease him (at least not yet). Also, he still doesn't LOVE touching fingerpaints etc., but he'll do it and even enjoy it, and certainly not scream and cry like he did as a preschooler when he'd get a teeny dot of ketchup on his hand. Same with things like heights and ladders and stairs: he used to shriek and shake with fear, and now he's insufficiently careful like a lot of kids his age. We didn't pay for continuing therapy (our insurance wouldn't cover it, either)--he just...outgrew it.

I LOVED what the OT calls the issue and what you call the issue! So funny.

Anonymous said...

I feel for you and understand your frustrations. My oldest has an auditory processing disorder but scored a few points above what the public school considers learning disabled. We have paid privately to get her services. I never thought about submitting it to insurance.

Anonymous said...

Check out The Miriam School in Webster Groves. It is for kids ages 4 (I think) thru 8th grade. They work with kids just like yours everyday. Don't let the cost scare you, they have very generous Scholarships (over half the kids are on some sort of scholarship). It has been a saving grace for my child.

R said...

Hi Jaelithe-- check your email for my invite :)

MrsFortune said...

Wow. What a situation to be in!!! Just BEAT down the doors of your school district. The squeaky wheel ALWAYS gets the grease. And the SQUEAKY PARENT ALWAYS gets the services!!! said...

AHHHHHHH! Ugh...yes, yes, yes. Delay plus gifted does NOT equal average. I know so many people who are trying to undo this equation in our own school district, even though the education code specifically says that you can be both.


Anyway, I hear you about the athletic thing. I was a complete clutz all my life when it came to sports, so the first time my daughter even rolled a ball, I was overjoyed. I will say, though, that I'm not sure schools still do that "pick last" humiliation thing. Some enlightenment is a good thing and I'll take it.

Jennefer said...

Clearly he got his great verbal skills from you. We have the opposite problem. I can't stop my daughter from climbing into my sons top bunkbed (even though we hid the ladder) and I can't understand hardly anything she says.

Shannon said...

It sounds like Isaac would benefit from physical therapy instead of just occupational therapy. It is my understanding from my husband, who just happens to be a physical therapist, that occupational therapists concentrate on just the body above the waist. But I also know that physical therapy is more expensive than occupational therapy. I would also search for programs through non-profits like Easter Seals. And just between you and me, you can do some therapy on your own. The information is out there although it may seem a little overwhelming. I'm not saying do away with the professional therapy sessions but don't be afraid to try some things on your own.
Also, read the education laws for your state very carefully. Sometimes there are ways to get the help you need when you push the right buttons. Good luck!!