Back to school kind of sucks for many special needs parents

Everyone sooo happy and relieved, and done whining about buying school supplies and what to wear for school pics!! Kids are back in school.

Meh. Back to school can be one of the hardest times of the year for parents with special needs kids. Let me illustrate this by telling you about my twosome.

Nick

Last week Nick and I sat together looking through baby photos. I told him aimless stories about his and Jesse’s infancies, about the ways they terrorized us, the tantrums and screaming fits and nasty diapers. Nick asked, “Did I have temper tantrums?”

“Sure,” I answered, and then it struck me:  I can’t remember the last time Nick had a tantrum. I recall some spectacular ones from his toddler years, but nothing after that. He’s just seven, and he hasn’t had a tantrum in years.

Nick is my neurotypical kid and then some. I’m learning not to say things like “well adjusted” or “normal” because I no longer know what that means. Better to say that he’s low-needs and exceptionally pulled together on any emotional scale that I can come up with, at least on the surface of things. He goes with the flow, naturally.

Preparing to go back to school with Nick basically amounts to doing nothing. A couple times during August he worried aloud about knowing how to count and add by fives. I told him, if you knew all that stuff you wouldn’t have to go to school; you’ll learn that in first grade. Lights dawned in his eyes, he realized I wasn’t going to make him practice, and he ran off to stick his fingers in our dog’s ears.  He was satisfied. My work was done.

* * * * *

Nick’s first grade teacher gave her students a little note to read the night before school.

IMG_2529

Awww, isn’t that sweet? Our teacher is a superstitious witch! Well, maybe a fairy. She made magic confetti!

This dime baggie was attached to the magic note:

IMG_2533

Let me just say from my very personal perspective: offering children a dime baggie of tiny confetti to sprinkle around their beds may not be the best move if you want to endear yourself to parents, especially those with cleanliness issues.

But the not-messed-up part of me gets it. So I gamely read the poem to Nick and handed him the confetti. He fingered the baggie gingerly, a slightly bemused look on his face. “So… I’m supposed to sprinkle these things under my pillow?”

“No,” I answered firmly, as I considered how many centuries it would take before I managed to round the confetti bits up. “But you could put the entire little baggie in your pillow, and your teacher says it will help you sleep better.”

Nick eyed the baggie suspiciously and thought for a moment, unimpressed. “Neeeh, I don’t think that will work.” He tossed it dismissively on the table and walked away, adding over his shoulder, “That will not help me.”

* * * * *

The first day of school, Nick woke up, went through his usual morning routine, and trotted downstairs for breakfast. He was relaxed and at ease.  A good 15 minutes into our morning, as I wandered about the kitchen making breakfast and school lunches, I made some passing comment and his eyes shot up. “WHAT? We have school today??”

He got over it. When I dropped Nick off at school, there were no tears shed, no demonstrations of anxiety. There rarely are with Nick. He didn’t demand excessive hugging and kissing. He plopped down at the back of the line where his teacher’s students were gathering in the gym, his body loose. I could tell he was a little nervous, but I walked away without a single backward glance. I don’t worry about Nick. Even if something goes wrong, I know he’ll handle it. He’ll make new friends or he won’t, and either way is fine because he’ll  get over it with a little help from his family.  He’ll go to speech therapy and be fine, because he’ll be glad people can understand him better. He’ll learn the academic stuff or he won’t, and either way is fine because if there’s a problem we’ll fix it together and he’ll get over it.

Nick came out of school completely happy on the first day of school.  As we sat down to dinner, he looked at me and nodded contentedly. “You know, mommy, my new teacher is actually pretty nice.”

Jesse

If both my kids were like Nick, I too would be singing praises about how awesome the first day of school is. My biggest worry would be where to find those odd items on school supply lists. But I also have Jesse, who is currently profoundly debilitated by her mental illnesses. Her tics, obsessions, and anxieties spiraled upward as the doom of school approached this year, reaching close to the peak levels we witnessed last summer before we put her on anti-anxiety meds.

So while Nick was gamboling about the house in late summer, playing make-believe with dragon figurines and forgetting to put on his shorts, Jesse was twitching tensely about the house spewing foul and offensive word-tics from her mouth, screeching about her fears, and terrorizing us with various tooth-gnashings, door slammings, violent bawlings, and extreme hand washings. I can’t fill those blessed foamy soap dispensers fast enough.

August was busy with managing Jesse’s mood swings, writing letters and outlines of issues and needs, preparing for meetings with school staff, returning to Rogers for additional intensive therapy, strategizing about tactics and resources needed to give Jesse a good shot at a healthy school year, figuring out medications (we started something new), making endless lists of possible accommodations and tools that will help Jesse possibly-maybe-hypothetically go to school full time this year, and engaging in a string of emails back and forth with school staff about how things are going to go down. Jesse also attended a couple summer camps, firmly establishing that her behaviors are going to require a tremendous amount of adult management at the start of things.

Just to give you a little feel for what we’re going for in therapy: one of Jesse’s main exposures is to stare at photos of her teacher and other school staff, and then not blurt weird nasty things about them.  It turns out everyone has a race, a gender, a size, and an age, and Jesse’s obsessive mind can settle on any insult associated with any of those traits and replay it a million times in her head, risking offensive blurts.

Anyway, a couple weeks ago, I had a pretty long meeting with most of the school staff Jesse will be working with. It wasn’t an IEP meeting (though she does in fact have one). It was more of a “what in the world are we gonna do?” kind of meeting.  We discussed Jesse’s status, her diagnosis and treatment, her needs, and all sorts of details. We made plans for as much as we could plan ahead for. I left the meeting feeling both optimistic and frightened.

And also I had to pick up those blessed school supplies, and I could not find a single yellow-covered spiral notebook, dammit, not in the whole of creation. Plus Jesse just told me yesterday that she doesn’t think I sent in the 6 pocket folders in 5 specific colors plus one extra in a color of your choice. Inconceivable.

* * * * *

That was the actual doing stuff. In the weeks before school started, many hours were also lost to purposeless extreme worrying, founded in years of experience.  Will the school actually come through? Will they actually do the things we agree to do? Will they have enough staff time? Will they remember everything? Will everyone who works with Jesse be informed this year, or will allied arts staff once again be kind of in the dark? Will substitutes actually bother to read the things teachers leave for them, so that they don’t mis-handle Jesse? Will anyone at our middle school be able to love and protect Jesse well enough, and will they build a massive cocoon around her like I do all summer long?

Or will Jesse wither and die a little emotional death each day, filled with self-loathing and an infinite sense of failure and suffering?  Will her classmates be tolerant and kind? Will they understand? Will there be mean girls who tease and exclude her? Will kids make fun of her on the playground again this year? Will they stare? Will she hurt any of her classmates with her behaviors? Will she be invited to any birthday parties, let alone make any friends? Will parents be mean about her? How badly will her self esteem be hit when all this goes down? Will she start hurting herself again?

How will I protect Jesse when she’s at school? How will I pick up the pieces when she comes home? How will I get past my own hurting to take care of hers?

* * * * *

Today, on the third day of school, I went into Jesse’s classroom to introduce her peers to what she’s going through. I spent hours beforehand updating and practicing my outline from last spring, when I spoke with her 4th grade classmates, to include a few new ideas that we’re working on.  I got Jesse’s permission to talk to her class, and I went over my outline with her.  She handled it with a stiff upper lip and agreed that it was a go.

In my mind, I call my presentation “What the F*$& is wrong with Jesse??” But that’s just between you and me.

I went into the classroom and saw a lot of new faces. I wrote on the board these things:

STIGMA

ANXIETY DISORDER

OBSESSIVE COMPULSIVE DISORDER

TOURETTE SYNDROME (TICS)

And we talked for a good half hour. I tried to impart to the kids the visceral sensations Jesse experiences because of these problems.  I asked them for compassion, understanding. I didn’t get a warm and fuzzy feeling, but the kids are older now, less apt to openly share. And they’re only three days into the school year and don’t know each other yet, any more than they know me.

I asked them to do Jesse’s competing response.  20-odd kids clasped their hands, clamped their lips shut, and crossed their legs.  We sat in silence for 20 seconds before several of them started twitching. I explained that Jesse’s basic drill involves two minutes, which I think is pretty impressive! But no one seemed especially agog about it.

I described intensive exposure therapy briefly — exposing Jesse to an anxiety-inducing trigger and then helping her learn to control and calm herself.  A good friend of hers chimed in, “So basically, you torture her every day at the hospital.”

Yes, I thought to myself, that’s accurate.  We go to Rogers and torture Jesse four days a week.  But out loud I said something like, “That’s one way to look at it, but I choose to think of it as vigorous exercise or physical therapy.”

And I think I mean it. I’m pretty sure anyway. Because intentions are everything, right?

I guess.

* * * * *

And I could go on and on. There’s no counting the nuts and bolts special needs parents deal with as we send our kids back to school. There’s no end to the worries as we watch our children step back into a hostile world after a summer in our protective bubble.

So let me send this shout out to myself and to all the other special needs parents gearing up for another punishing school year: We are relentless warriors, beasts, battering rams breaking down the paper walls and false doors that stand in the way of our children. We are the main reason our children, and the like-challenged children who follow them, have a chance at living in a world that enables them instead of disabling them.

We’ll drop balls, we’ll forget things, we’ll screw it all up. Then we’ll pick up the pieces, remember the forgotten things, and make it all right again. We’ll keep trying and we’ll keep going, because that’s all we can do for our kids. We don’t need to be thanked and applauded wildly, but we sure deserve to be.

And F*#% the school supplies.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s