All I wanted before I was a mom was a house with a picket fence, a couple of kids, and to drive a Suburban. Well I should been more specific in my wishes, because I got all of those things and was over the moon happy. Then autism invited itself to our lives and is a house guest from hell.
Seriously, I thought motherhood was going to be this amazing journey with my kids and I was going to get to run the PTA, run the sports activities, make sure my kids were social, and my house to be the Kool-Aid house (do people even know what the Kool Aid house is anymore?), where everyone wanted to play...... it was a plan easy to accomplish and achieve, I had this little June Cleaver dream going on in my head.
Then that fucking autism arrived, and I swear to God it cracked the parenthood foundation like nothing I could have ever imagined. The autism arrived and it took away every shred of a dream that I had of motherhood. I guess it's not appropriate to say, it took everything away, because I still am a mom - it EDITED my dream of motherhood.
Autism changed the plans that I would be the house everyone wanted to play at. How can anyone play at our house, when we have non talkers, and we haven't grown out of Sesame Street at 7 years old, and instead of boy scouts, sports, and play dates we are in therapy after our 30 hours a week at school, we go to therapy 10 - 15 more hours a week. It made the relationships we had very hard to keep up with. My friends with typical children, don't want to play here and watch the same episode of Sesame Street we've been watching for 5 years or Cars, they have moved on.
Autism did however, put me in the lives of some super amazing autism families that are so awesome to my kids, and we all just "get it". We went to a party or a gathering with them, and there is no need to "explain" our kid needs a moment, or why we can't sing "Happy Birthday" at a birthday party, or just figure out how to help each other out when we are trying to juggle all our stuff in addition to an over stimulated and anxious 6 year old that is ready to bounce himself off of the planet getting to the car. We just have this amazing connection and understanding that I'm so grateful for. I see the moms of typical kids and it's all a contest and gossip, and who made the better teacher gift, and just bullshit. So that dream of motherhood I had, would have in some respects could have been a useless nightmare. Autism altered my motherhood in an awesome way because of other autism moms that would walk through fire with me and show me how to get out of it.
I lost friends and people "got busy", I also walked away from friends, because I got sad and hurt when they would say stuff like "he doesn't play with my kid, he ignores him", "he looks so normal", "he's so cute, he'll just grow out of autism". I politely and silently died a little bit inside, because the reality was that my kids have autism, it's not curable there are things about them that will always be different even if we are struck with some level of recovery. One of my kids is severely impacted with autism and his needs are significant, parenting him gets more challenging each day, not easier like some typical kids as they get older. Some of our family and friends will never understand that, and have politely put us on their "B" list of friends. We don't get invited to parties, or we get invited an hour before parties start because they know we can't get a babysitter at such short notice.
There are days when I long for a life of easy parenting (which I know is not reality). Where I can just say "We're going to the movies", go and buy the ticket, some snacks and everyone sits down watches the movie laughs and or cries appropriately in the right places and we go home. But with autism, we have to start prepping the movie about a week before we go, talking about the theatre, the darkness, the seats may move, it will be loud, the screen will be way bigger than the TV at home, and basically tell them about the movie we are going to see, because you see autism doesn't like surprise or the unexpected. We may and have arrived at the movie theatre and the anxiety that comes with autism and had to leave before we could get autism under control to be courteous to the other paying customers.
After 3 years of desensitizing and working with therapists, and a ton of blood sweat and tears, and my kids finally go to the beach, and one of them goes into the ocean!! So we have victories in some areas, we have to basically go through a war zone to get these victories and I relish and love every single victory that we have.
As Autism designed our life, and continues to design our life I usually hate what it has to do to our life, but I adapt and work through it until we get to a place of comfort and acceptance with whatever the issue may be.
My son's new favorite song is "Fixer Upper" from Frozen, and I swear, it couldn't be more appropriate when he walks around the house and sings "You can fix the fixer upper with a little bit of Love"........ yes baby that is what mommy does all day everyday, tries to fix my fixer uppers with a little bit of love. And sometimes a few tears, some laughter, and some patience, and some frustration, and some gentle coaxing and a lot of LOVE.
For the most part, I do try and promote awareness and teach people about Autism so they are aware, informed and know, my kids are people too. There are days though, when Autism has just kicked my ass, stomped on my soul, and abused my kids, my family, my house and I have nothing good to say about it, so I have to elect to be quiet, because sometimes autism makes me not nice or patient or dignified.
