So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis for their "special" kids. Fascinating. If you enjoy useless information packaged in sensational totally misleading wrapping. The gist was that the isn't an actual increase, there is just a shift in privileged parents forcing diagnosis from doctors, and poverty stricken ones not. The later, not because they don't have the means to pay for medical bills, but because they don't have the brains and education to. To this is I just want to hold up my hands in the universal whatever sign and think about something else, like chocolate, but I can't seem to succeed. Especially today.
Today I brought the little lion man to school.
Today I took a "back to school" pic on my phone, well more like a "first time to school" pic. Today I pretended that I have a normal preschooler. Until I came to pick him up that is. He was sitting off to the side, in the shady part of the yard/ school pick up area, surrounded by adults. The other children were standing around their backpacks, joyfully jigging in place and full of noise.
My guy? Listless and over heated. Cranky and ready to go home. The adults milling around were his teacher, his aid, his PT and his OT.
Oh yeah I thought to myself, my little lion is of a different color.
Oh yeah, I remembered those little things that I am instinctively aware of and do automatically for and with Leo; for others, is different and out of the preschool norm. No it's not they did anything wrong, indeed they probably are doing everything better and with more care than me, just different. His therapists are totally great and his new teacher seems awesome. It's not anything about them or the school. It's more like the necessity of his experience versus the typical one.
I'm not really a control freak about Leo's care. Ask anyone who has babysat for us, there are no charts or diagrams, just a brief nod towards the drawer that contains his seizure drug and I'm out.
I didn't have any real nerves or fears about Leo going to school. In fact, I thought it would be awesome for him, and awesome for me to get a much needed break during the day.
However, walking up to get him today, my stomach clenched and I knew viscerally that my auto-pilot care of Leo hasn't done him any favors.
My downplaying Leo's needs, only in the end, serve to make them bigger and more noticeable. I felt proud of myself before how little I have been bothered by Leo's typical peers, how little I care that they are speaking in full sentences and have perfect oblivious control over their flying limbs. I didn't mind, honestly. Leo is his own kind of special x-man. But for his sake, today, I minded.
He's doing school, just like all the other little guys, but for him, it's different.
The fun-lets-trace-our-body shadows on crinkly newsprint game for him, is terrifying, because the paper looks and sounds like the paper covering the doctor's exam table, and lying down on it means pain is coming.
The playground swing, though totally super fun and one of his favorite things is right in the sun at the hottest part of the day and within minutes he's overheating. But to stop swinging and stand in the cool shade isn't super fun and so crying ensues. Again.
After three hours of preschool with the lion, I saw four exhausted adults.
Oh yeah, I thought to myself, he's my one in six.
Not because we are poor or rich or smart or not. But just because he is. And for me, he is one in a million, and I don't care. But I care for his sake. I grieve for his sake, that things which should be easy, are hard. Those times I just know what he needs, and others, of course do not, is hard.
He's easy! I say. A cake walk. Just throw him a bone now and then; a kiss and a snuggle and he's a happy man.
But it's not true.
I've gotten used to him being different, getting special treatment, singled out and marveled over. But it's not me that needs to get used to that. It's him. He wants what other kids want. He tries to do what they do. He has the same expectations and desires, but sometimes, it's just too hard.
But sometimes it's not.
And sometimes it just is.
It wasn't all bad today, no indeed, it was mostly good, but was it normal?
He had fun, played some games, did his thing, but I know it was hard.
Sometimes I forget just how hard it is for him.
But he's been through worse.
And the lion man? He doesn't quit.
So nether must I.
After eating his sister's birthday cake (she turned eight!) he went to bed in his new room in our new house early, tired but chipper and I know tomorrow will be better. If not, than the day after will be, until the hard becomes less hard and just normal.
|Leo chomping at the bit to go explore school, and dragging me and his PT along for the ride.|
I couldn't be prouder of this little guy. No matter what.
Is there anybody out there.... who's still reading this blog? Raise your hand and post "aye!" in the comments....
Thanks everyone who commented! It really is important for me to know on this blog-iversary that people are still reading! It keeps me motivated to keep posting. Writing, after all, is meant to be read.