Skip to main content

Autism- The Unexpected Guest

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.


Popular posts from this blog

Before Autism.....

Before Autism touched my life, I considered myself the kind of mother who pretty much had it together. Before Autism, I worked a full-time executive position, where my obsessive and control freak tendencies served me well. My three children were used to the daily routine of full-time school or daycare. Weaning, potty-training, bedtime issues, discipline, those were things OTHER mothers struggled with, for me it never seemed like a huge deal. I managed to sail through the first 9 years of motherhood without wrinkling my designer clothes, mussing my perfectly relaxed hair, or chipping a french manicured nail. I could never understand what other parents complained about. I was so smug and arrogant. I could not imagine what must go on in the houses of the lady behind me in the check out line with the screaming, rebelling children. I would think to my myself "home girl needs to get it together".

I thought I was done having kids, so my fourth pregnancy was a huge surprise in the m…

The Giving Tree.... Gives Me A Much Needed Lesson

"The Giving Tree" is one of my favorite children's books. I must have read it a million times to my three older kids over the years, but Spike is just getting into story time so we never read it.

I had mixed feelings when Spike's school announced that the school would be putting on a production of The Giving Tree as a musical. Happy because I love that story and I would get to share it with another one of my children and surprised and worried because his school hasn't had anything like this before and I wondered what it would be like. Let me explain.

While Spike is very verbal and pretty high functioning, at least half of his school's student body is not. He attends a PK-3 all the way through 12th grade special education school. The student's disabilities range from mild learning disorders to kids on the spectrum to blind or deaf and severely physically and mentally disabled children. Please don't get me wrong, the school has been AMAZING for Spike. H…

My Soapy Past...Ode to Soaps

Tonight's premiere of the new Dallas has me nostalgic for my soaps, All My Children, One Life To Live, Dynasty, Knots Landing. Televisions line up is chock full of talk shows and reality shows. They can be entertaining, but it can get tiresome. I miss the days of scripted dramas, with twists and turns and ball gowns with shoulder pads. In honor of tonight's Dallas comeback. I am re-blogging a post I wrote a while ago about my soap love.

   An Ode to Classic Television Soaps and 41 Years of “All My Children”
So, in addition to my many varied entertainment addictions, is my sometimes secret shame.... Daytime Soaps. Yes that's right, I said it. Most people who know me, would call me a TV snob. I'd like to say I'm a connoisseur of sorts. I respect the art of good storytelling and cannot be convinced to watch a show because it's popular, if it's just not there.
This is why I've always found it hard to defend my 30 year love affair with Pine Valley. I mean I…