It’s hard to believe the little boy who first made me a mommy will be four next week. There is not a day that goes by that he doesn’t bring a laugh or a smile to our world. The absolute best is when he lets loose his belly giggle. It’s magic and music, all little boy, and perfectly contagious.
He has such a fun sense of humor. If you give him the slightest indication you might just find him funny he will do anything to deliver for his audience. Whether it’s telling me “I’ve got my eye on you” at soccer practice or “Hey look, I’m an Easter egg” with his basket perched on his noggin, he’s just so fun and funny and I’m so glad he’s mine.
Like most parents of school age children, I’ve recently attended a year end conference at school to discuss his progress and what he still needs to work on. He’s had a great year and everyone at the table could see how far he’s come. We also know the challenges that still lay ahead. For the first time though, we used a word we had avoided in the past or kind of danced around because none of us were certain it fit. Autism. Through various correspondence, a year of observations and watching him grow, everyone on his team including his mother is now pretty sure he is on the high functioning end of the Autism spectrum. Because he is just turning four, there won’t be a formal evaluation until the end of the upcoming school year when there is a better chance for accurate results, but there are 70 collective years of special education experience on his team so I would be very surprised if the results are different than expected.
For about a year, we’ve used the words Autism Spectrum Disorder and Sensory Processing Disorder which is different than actual Autism. Sensory processing disorder which for a long time we thought he might have is on the autism spectrum but is not autism if that makes sense. SPD is something as adults people learn to manage but does not come with many of the challenges of autism.
Ethan, though very high functioning, can have trouble making eye contact, struggles at times to answer questions without quoting a memorized answer or something from a cartoon, and if certain things are out of order he can become distressed. For example, there was a picture on the wall at therapy. The picture had fallen on the floor and they propped it against the wall. He repeatedly kept going over to it asking when it would be replaced. He does better than many with Autism at regrouping and moving on but the distress is definitely there. He attends a special education preschool and has been in Speech Therapy and Occupational Therapy for a year so we knew something was going on. As a mom, I can see the little habits and quirks that are markers of Autism.
You might think with the consensus of an eventual Autism diagnosis and the elephant in the room finally being mentioned, our family would be upset or would grieve. The thing is we have already grieved. We grieved when we could see in his toddler class he wasn’t able to function like his peers, yet we didn’t know why. We grieved when even though his school (the one his sister now attends) did everything they could to help him, the school and I both knew it wasn’t the place for him. We grieved when even though we were referred for services and knew he needed help for something but not what, we were turned down. We grieved when we had to leave a play group because my sweet boy couldn’t keep his hands to himself and we no longer felt welcome. I get it- no one wants to go to playgroup worrying their child will be pushed or hit but it hurt just the same.
Yes, it’s not what I wanted to hear as a parent, but something my mother’s heart already knew and had already cried for. We had already grieved and picked ourselves up and dusted ourselves off and went about trying to get our boy the help he needed and got down to the business of living and being happy. In some ways, naming it is a bit of a relief as we can now know exactly how to approach teaching him, helping him, and getting him the resources he needs. Knowledge is power.
He is so excited about being four and a Hot Wheels party with his best friend and family next week. He loves cars, Angry Birds, food trucks (Yes, you read that right.), Applebees, outer space, ocean life, cooking, books, and (most of the time) his sister. He is so unbelievably smart and can read many words. I almost fainted when he brought me a spice jar when we were cooking recently and said “Here’s the cilantro!” And by golly it was! He has the kindest heart and he loves to laugh and to give and receive hugs. He’s a little love bug and sometimes when he asks for a hug I do hold on a little longer and hug a little harder than needed. I worry occasionally how the world may treat him as he grows and it’s almost as if I believe if this mama bear hugs hard enough now it will protect him from a world that I fear is losing it’s kindness.
Do I wish he didn’t have autism? Well, sure. Not because I want to change him or am disappointed but what parent wouldn’t want their child to have less challenges if they could make it so? However, Autism is part of who he is and I love all of this amazing, funny, kind, bright, rowdy gift from God.
Yes, I do worry for his future sometimes even though people with high functioning Autism or Apserger’s often go on to have careers and families. My God is good though and I believe he puts what we need to see in front of us when we need to see it. The same week I had the meeting and we said out loud that Ethan has autism and I really began to worry and wonder what his future might hold, God sent me a “Fear not” in an episode on The Food Network and on my son’s favorite Wheel of Fortune. (I promise I’m not crazy!) On America’s Best Cook on Food Network, there was a contestant who was a biochemist, a great cook, and happened to have Aspergers as did a contestant on Ethan’s beloved Wheel of Fortune. Yes, the two seemed a tad different than the other contestants, but they were each himself, doing what they loved, and they were happy. At the end of the day, that’s all I want for my boy out of this life.
I am sharing this to tell our story which I’ve been doing since we began this journey with Ethan and I wanted everyone to know where we are now, but also to shed light on life with Autism and the amazing people who have it and let other families touched by Autism to know we are in this together.