Waiting Outside the School While The Typical Kids Pass
Some days are rougher than others. That’s always been true, but there’s some events that rub it in your face. For me, it happened last week during the first week of school with my son with autism.
We knew from the day that my son was born that he’d be different from the other kids. He was born at 25 weeks with severe IVH (level III on one side, level IV on the other). The doctor’s bedside manner was so positive that we didn’t realize that it basically guaranteed long term issues, the only question being the severity. It didn’t take long before we realized, to reference Emily Perl Kingsley’s poem popular among special needs parents, that we were in Holland.
It has now been 11 years. We’ve had bad days — like when he dumped a Costco sized bag of flour on the kitchen floor and mixed it with every single sauce in the fridge. Or when he throws his expensive seizure camera through the wall. Or every time he breaks his “unbreakable” glasses. And we’ve had good. For example, with support, our son spent almost his entire fifth grade in the traditional classroom, and we were even told by his teacher that he legitimately had all the right answers in science.
We get holes in the walls, trips to therapists, and calls from teachers. We get backslides and steps forwards.
I strongly believe that society should be so much better at accepting people with special needs. And that’s what I ultimately want for my son. But there’s also the small, guilty part of me that wishes that he could just be typical. When we get good reports from his teacher, it almost seems like that selfish part of me will get my wish.
Then we have weeks like last week.
New School, New Challenges
A few days before class started, parents (and, optionally, kids) were invited to a jump start meeting with the middle school administration. Most of it was practical information, but then the principal left us with these words:
“I know it’ll be hard for you parents, but you can do this. Just drop off your kids and leave. They’ll be in good hands.”
I laughed. If only that was an option.
On the first day of school, I walked with my son and his service-dog-in-training to the school. We got there before the doors opened and stood just outside the mass of nervous and excited sixth graders chatting and bouncing around, waiting impatiently for the doors to open.
My son had been insisting that he couldn’t go, but now he started begging in earnest. “I don’t want to go to school,” he said. “Can’t you home school me?”
When the doors opened, the tween horde streamed in. But not my son. He got even more agitated. He started pushing me away and cussing at me.
More kids swarmed by, giving us the side eye the hurrying on or turning to chat with their friends.
Then my son’s backpack came off and the hitting began. “I won’t go!” he insisted, lacing his words with others that would, if it were recorded and put on a show, either require a lot of beeping or be labeled with a hard TV-MA.
At this point, some of the administration finally realize they would have to intervene. They came over and told my son that school was going to be fun, that he’d have such a good time, that his teachers were amazing. And so on.
None of it worked. If I tried to step away, he would follow, with a death grip on on my arm.
For nearly ten minutes the group of us begged and promised and cajoled, all to the background of more kids streaming from parents’ cars or from bikes they had ridden independently from home into those open doors. Eventually, it was only the adults and my son. And, finally, one of the admin distracted him enough that I was able to sneak away.
I watched from a distance for a few more minutes. He still refused to budge. I left before he went inside.
(We later got a call from the attendance line saying he was marked absent from one or more classes. We called right away to make sure he hadn’t been kidnapped, since there’s zero chance he’d run off on his own. They confirmed that he was there.)
I drove home, turned off my car. And just broke down. For probably a good ten minutes.
It was supposed to be easy. The principal promised. Just drop off our kids, maybe take a picture, then walk away. Be sad that they’re growing up but proud that they’re becoming independent. Or something like that.
The Rituals Serve as a Reminder
So much of our life is filled with cultural rituals. Little milestones to mark children turning into adults.
For me, and likely many other parents with special needs children, instead they serve as a reminder that things are different. It doesn’t mean that things are bad. It doesn’t mean that you and your child aren’t living happy, fulfilling lives. It’s just not what you expected.
And that is real loss to be grieved.
It’s also a reminder of the other milestones looming in the distance, events that are a cause for celebration for so many that he may never hit.
Will he drive?
Will he go to college?
Will he have a full time job?
Will he live on his own?
Will he get married? Have kids?
Will he ever have a real friend?
I don’t know. We won’t know until we get there.
When we’re struggling through these rituals, especially to the beat of hundreds of typical kids streaming by without an outward problem, it’s just another reminder that we may never get to experience those huge Instagram smiles as he goes through the typical progression of society.
Be Patient with Those Struggling
Even sharing these difficulties can be a struggle, because it feels like I’m complaining. I might be a little bit, but I can also count all the wonderful times we’ve had together. All the little blessings that my son has brought into our lives that we likely wouldn’t have with a typical child.
I also know it’s a little unfair that our struggles are visible. It doesn’t make them easier, but it does mean it can’t hide or let fester out of the public eye.
Some aren’t so lucky. I try to remember that when there’s an interpersonal problem. Take a breath, try not to issue judgment. I have no idea what else they’re going through.
We’ve gotten plenty of “bad parent” looks and comments from strangers when what we really needed was a hand. I don’t want to be the one offering the side eye and the sly remark to those in need.
I’m so thankful that the administration was finally able to get my son in. And the days since have been— while not perfect — a little bit better.
Like I said, things to be thankful for. And all evidence points to everyone in administration knowing my son by name after one week. We’ve had so many of them already talk about his fun personality and unique ideas. Usually mixed with questions on how they can get him to do activity x, y, and z.
For those whose struggles aren’t so obvious, they may not get the same help. I try not to judge them, either. And I hope that some day — when my load is just a bit lighter — I’ll be the one lending a hand.
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