Thursday, August 28, 2014

Ignore and Celebrate

School started last week. We are now a two kids in school family. We have been a two kids in school practice family for a few years, while our youngest was in preschool. Turns out, just as I had suspected, preschool was not so much a trial run for the real thing. Turns out, the real thing is much, much harder. So we have a two weeks under our belts.  Two weeks of packing two lunches, signing two homework folders, reviewing behavior charts and reminding two boys to put those backpacks away. I swear, between the shoes, the dog and the backpack, I am going to break my ankle.

And while it has been two weeks of school schedules and strict bedtimes and balancing football practice and homework, it has also been a week of utter emotional chaos. People, I have cried every day. Every single school day has brought me to tears. And to cheers, as I work hard to find the good and to celebrate even the tiniest of victories. We are midway through week two of the school year and I am ready to stop.the.rollercoaster. Please. I just want off.

But I can't hop off. I can't just raise the bar that is holding me in, hop out, and run over to the calmer merry go round my oldest son is riding through life. I watch him, with awe and jealousy, as he rides his horse up to the highs and down to the lows. Lows that aren't really all that low and that have a safety net- a floor between his horse and rock bottom. He hangs on to his horse as he travels around his world, going up and down, smiling. Sometimes I get to ride on that fun and peaceful ride with him, and I love it. I know sometimes it may seem tame to him, but I would love to ride the merry go round with him forever, until the day he hops off and runs for that rollercoaster of his own. Sigh.

Parents of kids with special needs have the added burden of educating yet another round of teachers and administrators about their child's specific brand of specialness. A by product of this is something I refer to as the "alphabet algorithm". SPD, RAD, PTSD, FAS... oh my goodness my son has an alphabet soup of diagnosis. You would think that all of those letters would mean that we would know exactly what is going on with my son. But I haven't a clue. It's a huge mathmatical equation. Is this (insert odd behavior here), casued by the RAD? Is it a sensory issue? Is it a flashback induced PTSD problem? Is he just being a typical five year old? Is it the color of the kitchen walls? Does he hate his socks? Does he hate me? Does he hate America? My head is going to explode.

I can't think of my son as an alphabet. He is a boy. He does not like changes to his routine. He does not like to go to bed when the rest of the family is still up. He does like to sing and dance, but only when he is alone with his immediate family. He loves to cook and clean and he is extremely attached to a stuffed dog. When in the right mood he can be funny, sweet, and thoughtful. Not that anyone else gets to see any of that. He has this deep yearning in him that I can't seem to fill. He can't seem to get enough of me, so much so that when I am with him I am torn between intense love and feeling as though I have been kidnapped, Is it love? Is it a need he has that has yet to be filled? Is is a RAD behavior? Is he trying to control me? Ack!

So as we wrap up week two of school I am ready to roll up my sleeves and get to work. Again. And I know this is only the beginning. I am staring down the barrel of 12 plus years of educating new teachers, advocating for my son, restraining myself, and, I hope, occasionally being totally amazed at the kind heartedness of others. I know along the way we will pick up other members of my son's village- a therapist here, a new friend with an understanding mom there. (Yes, I saw my son lick your doorknob. Nope, don't know why. I was hoping you didn't notice that he just jumped off your beautiful sofa and landed in the middle of your living room so hard that your sweet family photo tipped over on the side table over there...)

Near the door of our home that we use most often we have a white board hanging on the wall. This board proudly displays the words "We can do hard things". I have listed things like showing compassion, math, keeping our hands to ourselves. I think there is one more thing to add-  life. I can do this hard thing called life. And so can you. We can advocate. We can let go. We can forget the alphabet soup of diagnosis. We can meet with teachers, state, restate, and then, calmly, state again the needs of our child. We can weigh one school over the other. We can ignore behavior and we can celebrate awesomeness. You and me, we can do hard things.  I am not so sure that I believed this last week, but this week, I get it. I can do this- not alone, of course. My husband, family, church, teachers, friends... God- we've all got this.

So to all you special needs parents out there, the ones who have been fighting for their child for years and the ones, like me, who are just stepping into this world, cheers to you. I am in awe of you. Go on, you amazing people- make it a great school year!

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