Autism- The Unexpected Guest

3:08 PM

You spend 9 months expecting a baby and you are pretty much aware of what comes with it. You read the baby books or in my case you rely on the experiences you gained from your previous children.

You are pretty much ready and resigned to all that is coming, Sleepless nights, sore breasts, exploding diapers, teething toddlers. These are phases, though. Tough times with a tangible end in sight. You can always say I can't wait until he can sleep through the night, feed himself, use the potty.

8 years ago when I gave birth to my last child, he wasn't the only new addition to our family. He brought an uninvited guest. His guest was unannounced and took very little time before making his presence known.

In the beginning, the guest was very loud and obnoxious, he always made his presence known. In his phobia of strangers. His crankiness in bright lights or loud noisy areas. His aversion to certain textures. His inability to be soothed. As a toddler, he grew with you into your obsessiveness with that empty ketchup bottle. His inability to hold conversations but amazing talent for repeating an entire episode of Blue Clues verbatim. His refusal to swallow certain food and so he'd store them in his cheeks. His sheer terror of preschool.

These weren't the phases I had prepared for. These weren't the baby and toddler hurdles, I'd easily jumped before with the help of the knowledge that, it's just a phase. It'll be over soon. I had no idea if and when these things would change. I cried a lot. I raged a lot. I worried all the time. I spent so much time organizing the world around him to try and meet a need before he knew he'd need it.

Things have changed dramatically but your guest is still with us. After years of tears (his and mine) in therapy so much has changed. He still does better in a calm environment, but noise and bright lights no longer terrify him. While still are uneasy with textures, he walks on sand and fingerpaints. He still memorizes tv shows and watches movies on repeat . But it's no longer his only form of communication. This year he ate eggs! For the first time and not only did he not gag, he loved them and asks for them all the time now. He's left his special school and is in a regular class and academically ahead of your grade. Who would have imagined this when he sat in that first day of preschool, face covered by a blanket and screamed for hours until they called me to come back.

And I feel like I should be able to exhale now. I should have shed the worry. He's passed all those the phases. Maybe his guest will go home.

But I'm not exhaling. I'm still holding my breath, I'm still worried. I'm still terrified.  Because Autism never goes home, or goes on vacation or even takes a coffee break.

There is still so much I don't know. So many ways his guest shows up dressed a little differently today than yesterday. But he's always there. Always with him. I still spend an inordinate amount of time trying to preempt tantrums, meltdowns and fears he might have. I analyze and reanalyze every quirk. The anxiety before and then relief, then anger after every parent-teacher conference when they say he's doing well DESPITE his autism. The stress of constant doctors therapist and the rest it never stops. being a constant advocate for  him. It exhausts. Every emotion, action and fear is calculated to find out if this is his guest or just a child's behavior. Being a constant advocate for Spike and his guest with teachers, doctors, friends and family is non-stop. And no, there is not tangible end in sight. This isn't a phase.

I was tired. and resentful, yes I'm not perfect. I can admit it. I wished he would go away and just leave my baby boy to me. Even after all this time, I have come to the realization that it's never going to happen.

In the last few months, I've come to realize, autism isn't a guest, it isn't a separate entity. It's part of you. I can no longer fight autism and embrace you. It's a part of you always, no matter how it is manifesting at the time. I have to let go of the thought that "this isn't him, it's the autism" It's all him ....and his Autism, And I'm okay with that. Finally, I'm okay with it.

Because everything Spikey is, is amazing, is wonderful, is magical...not despite his autism, not even because of it. But because he is Spike.... with autism. And maybe it was unexpected, but all of the parts of him..are welcome.

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