Beyond It

It occurred to me that I never wrote about our orientation night at Noah's summer camp from a couple weeks ago. Perhaps I initially decided that it was a boring topic that no one cared about. Perhaps I was more than likely right. But camp starts on Monday and I JUST finished filling out all the case history forms and permission slips and assorted release forms this morning, so needless to say, I've got Occupational Therapy Camp on the brain in a big way.

The camp is nice. The camp will be nice. There are three motor skills gyms, a 1:1 ratio between therapists and children and two field trips to a therapeutic pony farm. Every Friday is Water Day, with inflatable pools and sprinkler toys. Noah will have a blast, and hopefully we'll see some real steps forward. Jason was thrilled and pronounced the expense officially more than worth it -- a fucking bargain, were his exact words, I think. I agree. 

Of course, me being the big fat stupid pessimist who wore the wrong shoes and had a headache that was totally probably brain cancer had to go and get overly sensitive and philosophical as we wandered the halls of the facility -- a facility that is primarily used as a special needs elementary and high school for children with high-functioning autism and other speech/motor/sensory problems. I wondered if these students had been through Early Intervention. If they'd gone to special summer camps and exhausted the district's offerings. I wondered if they had, and if this was still the result, costly non-mainstream tuition, worries about college and afterwards, a label that stuck. Our goal had once been "regular" preschool; now we're pinning our hopes on kindergarten. I wondered if these families had similar goals once, and still ended up here.

It looked like any school, complete with lockers and bulletin boards and posters documenting the students' activities and achievements. The photos on these posters were mostly boys, much older than Noah, and...I guess because I KNEW, I couldn't just look at the photos. I saw it. You know? I saw the eyes looking at the camera but not quite focusing. The bodies standing next to each other but without any touching, without any arms slung around each other's shoulders, without the natural ease that comes from knowing the boundaries of your own body and how it relates to the person next to you. I saw slumped shoulders, defensive posture, splayed fingers, low muscle tone, protruding tongues, an endless checklist of stuff I've read about and occasionally witnessed myself.

I was deeply ashamed to realize that I saw all that stuff before I saw the boys, the children, the other people's precious chubby-cheeked babies.

Jason chided me the other day for interpreting almost everything Noah does these days through the filter of his sensory problems. He couldn't just be scared of the flying house in Up. He couldn't just be worried that all the balloons would pop and the house would crash. No, I fretted over his rigid thinking, his terror over the slightest change in routine and things Not Being Exactly Just So All The Time, and the force of his reaction and the volume of his shrieks and on and on it went and I went until Jason suggested that I take a break from all that reading and researching and compulsion to know more! and fix more! and advocate and educate and on and on and etc!

At our IEP meeting, when Jason and I started talking about all the different tactics we've tried to help strengthen Noah's skills in certain areas, the occupational therapist suggested that we could maaaaybe start relaxing now. We could let the experts handle things and get back to the business of simply enjoying our child. I just stifled a snort because LEAVE SHIT TO THE EXPERTS? AS IF THERE ARE ANY EXPERTS. HA HA. EXPERTS. THAT'S A GOOD ONE. The importance of being part of your child's therapy is undeniable -- YOU know your child best, YOU are there day in and day out, YOU have more of an impact than 45 minutes of therapy a week. YOU. YOU YOUYOUYOU. Don't forget that, don't slack off. And don't fuck it up.

This is..a tremendous amount of pressure, particularly when you're talking about your firstborn, when you feel like such a goddamn ROOKIE about even the simplest thing. Noah has completely shattered my expectations of what motherhood would be like. He has both humbled and enriched me. He has given me a greater sense of purpose but also the occasional feeling of drowning in my own inadequacy.

(And a tendency towards overwrought metaphor, apparently. Yeesh.)

One of the things I am guilty of is keeping a List. It's in my head, though I've occasionally rattled off a few choice items to Jason and my mom and in imaginary blog postings that I compose while brushing my teeth, before I have coffee and think better of it. The List is the answer to a question that no one has ever asked me.

Do you think Ezra is...you know...the same?

The List is evidence that no, I don't think so. From his early back-and-forth conversational coos and strong preference for me, to his fascination with Baby Faces books and joyful interest in other people. He babbled at people instead of inanimate objects. Ezra loved the feel of grass beneath his legs and between his fingers -- Noah simply raised his legs up away from it until he toppled over. Ezra eats anything and everything -- Noah's textural issues were already becoming apparent by this age. Ezra does not appear to be as sensitive to music and sounds, but does complain when his diaper is wet or when he is cold. Ezra waves and claps and mimics certain noises and facial expressions -- the very first official warning flags we saw at Noah's 12-month appointment when he couldn't do any of that. The List is long, very precise, with dozens of little moments that I've filed away for reassurance later.

But again, Jason has (rightly) pointed out, it's not fair to suddenly look back and sweep every memory of Noah's babyhood -- every personality trait and preference for different books, everything that we once celebrated as being part of our "exceptional" baby -- under the rug of SID/SPD and the looming Spectrum. It's not very fair to Ezra, either, to observe him strictly through that lens, hovering over him with a checklist in hand, breathing a sigh of relief every time he acts "normal" or "typical," instead of just viewing the differences as just that: Two. Freaking. Different. Children. My. God.

It was a bad night, that orientation night, because I realized that more and more, I only saw it. I was losing sight of my own baby, my child, my amazingly smart, sweet Noah, and letting his quirks and issues and my worries and fears for his future cloud over the son.

***

This week there was no school, no camp, no playdates or birthday parties or anything we had to do. We rarely got dressed, Noah watched TV whenever he asked nicely, dragged as many toys into the living room as he wanted, and ate macaroni & cheese for lunch pretty much every day. If he asked for white milk in a red cup and the red cup was dirty, I rinsed out the red cup rather than engage him in an argument about the blue cup. We cuddled and tickled and roughhoused. We made a big happy birthday banner for Jason using fingerpaints. He asked for a napkin after every other paint streak, and I gave him as many napkins as he wanted. When we were all done, we hung it on the front door. 

It remains pretty much the only thing we accomplished all week. And I feel pretty good about that. Camp starts on Monday; this week was a week to enjoy being with my boys, my beautifully different, equally essential boys, a brief vacation from it.