Thursday, October 15, 2009

An Open Letter to Every Teacher of a Child with a Sensory Disorder

Trust me, I really, truly do want my kid to learn to follow the rules we adults set for children in school about sitting still, sitting up straight, being quiet, paying attention, waiting in line, waiting one's turn, following directions in order, focusing on the task at hand, putting things away in their proper place, etc., etc., etc.

In fact, before I became a parent to this particular child, I had very firm notions about how, through the application of strict (but not too strict), rational (but not too rigid), consistent, enlightened, loving discipline at home, I would produce a superior school citizen, who unfailingly said please and thank you, shared playdough equanimously, lettered his own name neatly in crayon at the top of each paper, bussed his own tray at lunchtime, and could pronounce words like equanimously on the first try.

Well, at least I succeeded with that last one.

You see, I am a good parent, with good intentions. I do believe in discipline and in hard work and respect. I understand that most, at least, of your classroom rules exist for a reason. And I sure would like for my child to be able to follow them.

My kid is smart. Really smart. Gifted-smart. He's playful. He's funny. He's kind to other people. He sure does look like a typical child. And heaven knows, I have prayed since the moment I first noticed there was something amiss in reactions to the world that he would just act like what he looks like. A normal kid.

But since his diagnosis, I've had to learn to accept that sometimes he literally can't.

It's not his fault his brain doesn't work in an ordinary way. It's not his fault that when he hears a vacuum cleaner start up in a distant hallway, his nervous system triggers the same alert response that a fire engine siren would cause in another child, and he suddenly can no longer concentrate on his writing lesson. It's not his fault that in a bustling room full of chattering children, he can't always filter signal from noise enough to hear your directions, and sometimes fails to follow them.

It's not his fault that when faulty messages from his vestibular sense leave him with a poor understanding of where his body is in space, he has difficulty figuring out how to hold a pair of scissors properly, or where to direct his crayon on the paper. It's not his fault that his nervous system gets confused and tells him he's off balance when he's climbing a ladder, causing him to freeze halfway up to the slide.

It's not his fault that after running around on the playground or in gym class, trying to keep up with children whose motor planning skills are literally years ahead of his, his compromised senses are so confused that he feels compelled to spin around or shake his head before he can sit still. It's not his fault that he fidgets when he does sit, because he can feel the rivets in the back of his school chair the entire time he is sitting.

It's not his fault that he can't eat well or quickly in a crowded lunchroom where he can't not hear every single conversation happening around him, and can't not smell every last ingredient in everyone else's food.

I know that people can't see, on the surface, just what is different about him when they first meet him. Not in the way you would see a difference of ability in a child who was wearing a hearing aid or sitting in a wheelchair. But that doesn't mean the difference isn't there.

And when you, as a teacher, fail to acknowledge that difference, you are failing him.

And the last thing I want is for a brilliant child to feel like there's no point in trying at school because, in your eyes, he can't do any of the little things right.

It's not that I want him to get some sort of extra-special consideration. I just want him to get the same consideration any child with a professionally diagnosed medical problem would get.

I put my child in a mainstream school despite the fact that I knew he would have difficulties in a typical classroom — despite the fact that I had been told by competent medical professionals that he would have difficulties in a typical classroom — precisely because I DON'T want to coddle him. Because I know that the world won't coddle him.

I want him to understand that if something is harder for him than it is for everyone else, that means he'll just have to try harder. He's a smart kid — really smart, gifted-smart — and I know he can do really well in school, eventually, if we all try.

But that's just it — we all have to try. He has to and I have to and you have to try, too. You have to try to see that he is trying. That he wants to learn. That he loves learning. That he wants to behave. That he wants to show respect. That he wants to get along well with you, and with the other children in his class.

That he knows he is different. That he wants, more than anything else in the world, to be able to act like a typical child. And the effort he expends, every day, to do just that — to do it for himself, for me, for you — is exhausting him.

I know your job is hard. But so is his.

Cut him some slack.


Jen said...

Word. I totally hear you.

My oldest is 9, and she was diagnosed with SPD at age 8, and with Aspergers at age 9. She is very sensory defensive in particular, and her ability to moderate her reaction is almost not there. It is this invisible disability that we as parents really have to bust our butts to advocate for and educate others about. I am subscribing to your blog!

Glennia said...

He's so lucky to have you as his mom. This is a fantastic post. Brilliant.

Awesome Mom said...

Hang in there!

Maybe you can have him evaluated and get him some adaptive PE. Evan has issues with motor planning like your son and his adaptive PE teacher is teaching him ways to compensate for his issues so that he hopefully will be able to move in a crowded room with out being a danger to himself or his peers. That was one big reason I was so adamant about getting him a full time para. He has already had two accidents in school and that was with someone watching him and helping him.

Fairly Odd Mother said...

I'm so sorry his teachers don't know how to best work with him! The kids could learn so much about tolerance and how to get along with kids who are different if the teachers would model this for them.

My heart goes out to you and your son. I hope things improve for him soon.

And I hope this post finds it way into many school mailboxes.

Kathy G said...

So this isn't a diagnosed disability that will get him an IEP and the extra adaptations he needs? Would another teacher in his grade level be more accommodating?

Son #3 (who's now 21) had trouble his entire school career. He was evaluated three times, but they couldn't come up with anything.

Jaelithe said...

It IS diagnosed. Not only by our primary care physician and our occupational therapist, but actually by the school district as well-- a district special needs evaluation when he was three determined that he had serious sensory issues that would interfere with his work in a classroom setting.

The problem with getting an IEP, which I have been fighting for for years, is threefold: One, the state we live in does not have Sensory Processing Disorder on its list of medical diagnoses that automatically qualify a child for an IEP, so we have to qualify based on test scores or classroom issues. Two, my son's advanced verbal skills and high IQ (he is five years old, just started kindergarten, and reads at the third grade level can can add, subtract, and multiply single digit numbers) keep canceling out his low motor skills scores when they average his developmental test scores, so he comes out looking average if you only look at the composite score and don't check the individual numbers. Three, a district official could look at those scores in detail and see the discrepancy and override the average score rule and help us out, but giving him an IEP would mean giving him occupational therapy from a trained therapist in the classroom, which would cost them money, which they don't want to spend in a recession, so they are making getting one as hard as possible.

Also, getting an IEP in the first place at the kindergarten level requires the cooperation of the teacher. And getting an IEP followed requires the cooperation of the teacher (or a lawsuit, one of the two). And, if the teacher, ahem, let us say just theoretically here, does not seem to believe that your child's medically diagnosed disorder that has been confirmed by school district testing actually exists, well . . .

Then you might start writing vague frustrated blog posts and contacting the state Office of Civil Rights and reconsidering home school. If, you know, you happened to be a parent in that sort of situation. Which I may or may not be.

Jeannette E. Spaghetti said...

Wow. That's intense, Jaelithe. I don't even know what to say.

Farrell said...

I cannot think of a better mom for him to have.

I just want to give each of you a GREAT BIG HUG.

R said...

Now that's my Jae-- Isaac's perfect advocate!

Anonymous said...

So troubling that one uninformed/obstructionist teacher can make a child's school experience miserable. I'm at a loss as to understanding how she can ignore a pediatrician's diagnosis--as a human being, an education professional, and legally speaking.

If requesting a different teacher won't work, then the other options you cited (private school) will have to be exercised.

Me said...

I'm not saying that I know exactly what you're going through, but we are going through something similar. I kept my oldest at a school that was less rigid because he's a little boy and hadn't grown out of the little boy energy. In moving to his current school, he skipped a grade level. His expectation of what this school would be like was so built up in his head after three years. Then he got there and reality set in and third grade set in.

Now, we're barely through first quarter, and he wants to give up and go to a different school. His teacher basically told him that if the only reason he came to Kennard was because of friends that maybe he should find a different school and give his spot to someone who really wants it. He tested in so he's smart enough to be there and should be able to catch up and keep up despite skipping a grade. We have parent/teacher conferences on Friday. I'm hoping it will be productive, because after talking with him tonight for about an hour I'm feeling extremely frustrated myself.

Anyway, there's my frustrated rant. Good luck with the teacher. I think she picked the wrong lady to blow off. :D

Carmen said...

I'm so late to this post, but I feel your pain. We've had fantastic good luck with Riley's teacher this year, but I know that we could so be in your shoes.

If anyone can do it,I know it's you.

Jen said...

A to the MEN! The other Jen there at the top is spot on, it's a hidden disability. Thankfully A has gotten a lot better with OT and VT and diet and some ADHD meds, but it was hell there for awhile. I just want to send this to every teacher I know...

Boy Crazy (@claritychaos) said...

aelithe, I just read your last two posts, and I admire you so much. Your son's situation at school is heartwrenching, and as a mother I can only imagine how hard it must be on you to see him struggling, not getting the help he needs. I wish you the best, and I believe that with your articulate voice you will get somewhere with this. Your son is lucky to have such a strong mama.

{sue} said...

Wow. Great post. Isn't it a shame that a teacher wouldn't want the best possible environment for each of her student to learn and do their best. I don't blame you for considering homeschooling, but it seems ridiculous that parents should have to go to that extreme to provide a positive learning environment for their kids.

Bridget Murray Law said...

Wow, this post was a real eye opener for me. I have twins, just turning 4, and one of them is plenty smart but very easily distracted.
He's in preK and his teacher said he tends to wander off in the middle of activities. He does the same at home. Like we're playing Candyland (which he asked for in the first place) and suddenly poof, where he gone?
And when you ask, hey, don't you want to play any more? you can't get a straight answer.
My Q is, is this just normal kid behavior or something that warrants some sort of professional evaluation?

Jaelithe said...

Hi Bridget. Thanks for stopping by.

Nearly all kids at this age are impulsive and easily distracted compared with older children, and some kids ARE, of course, just daydreamers by nature, so I don't think I could tell you from the information you gave here whether I think your son has shown enough red flags to merit an evaluation. But I would invite and encourage you to look at previous posts on my blog about my son's sensory issues and see if any of my son's symptoms look familiar to you. You can click on the tags "Sensory Disorder" and "The Boy Who Would Not Eat" in my sidebar.

Also, I would recommend you check out this page:

It can give you an idea of common symptoms.

The correct medical professional to approach for a sensory evaluation would be an occupational therapist who specializes in pediatric care.

Sarah said...

I feel your pain. When we had my son tested for an IEP in first grade, the school district said he did not qualify. I found out that I could have him independently tested by a phsychologist and the district has to comply with the results. We did that and he was found to have a learning disability. We got the IEP and it was a tremendous help. This was some time ago (about 8 years) and I'm not very familiar with the St. Louis City district, but we were in Jefferson County, MO, so the state rules should be the same. I was also lucky in that my mother was pursuing a degree in that field at the time, so she did a lot of the research for me. I am sure your advocacy for your child will pay off!

Lisa said...

I've wondered how things are going for you and your little man.

I think it is harder for them at the younger ages. Not just because he's younger but because you've got a classroom full of young bodies constantly in motion. All of these other kids have a hard time sitting still and not making noise. And that just is hard to tune out for an adult let alone a young child.

Last year (first grade) was a bit easier. This year has been even better. The kids in his class are more orderly, have an easier time working independantly and sitting still. So I think that helps quite a bit. And I think that will help your kiddo too.

But yeah, the lunch thing. I cringe when I think about how little that child probably eats at school. They get 20 minutes to eat. That's from the time they get in line, get food, sit down, etc. And Seth can't seem to eat in noisy places so he comes home famished each day...

sugaredharpy said...

Thank you for sharing this!