The Isolation of an Autism Parent
Being an autism parent is extremely isolating. I can say that I don’t have a tribe. I don’t have a group of mom friends to hang out with, who will be there when I need to vent or to even vent about their struggles.
I don’t like to just wallow in our struggles. It is what it is, but it’s nice to hear what’s going on in other people’s lives, happy or sad. I want to give advice and listen to someone and celebrate their victories. I have a couple of friends that I get together with a few times a year. But no one that I can hang out with at any given time. No one to go out on the town with when I need a break.
My life consists of work, home, and therapy. The funny thing is, I’ve never been happier. I can say that in 37 years, I have never been happier than I am now. I’d just like that extra social life to incorporate into it.
I can count on one hand the number of birthday parties my daughter Lillian has been invited to in her ten years, besides family birthday parties. And when we did go to couple of birthday parties, we had to leave early because Lillian doesn’t like being in groups, or couldn’t manage the bouncy house because of her gross motor delay.
Two parties, I didn’t even attempt because they were rock climbing and gymnastics parties, and that was well above her level. I didn’t want her to struggle even more than she already would or get made fun of because she couldn’t do it.
Most people don’t understand why we do the things we do or the choices we make when it comes to Lillian. And I get it, why should you? But even with moms, the invites for coffee stopped coming. The invites for play dates stopped coming after having a couple with us and I suppose seeing that we are different..
My social life is work, where I spend my time catering to people I don’t even know. And I crave those times, because I get to talk to people. I get to talk to people about other things not concerning my family. I love my family and I would do anything for them, but sometimes you need a break.
I’ve been trying to branch out and meet people. I’d like to meet other autism moms, because they will understand if we have to cancel at the last minute because I can’t get Lillian out of the house without a meltdown. They will understand that we can only stay out for a little while so she doesn’t get overstimulated.
We recently took a five week class for parents with kids with autism. Every single parent there had boys with autism, except us. And it seems most people don’t realize girls with autism present differently than boys. We didn’t really get to connect with anyone because not everyone came every week.
There was one night though that we had a conversation with another mom about our kids and we laughed and laughed and Chuck and I were like, ‘Wow! Someone who gets it!’ We’ve never had that experience before and it was great. But she never showed up to class again.
Probably, because, autism. We get it.
Written by, Jenn Karboski
Jenn’s daughter Lillian was diagnosed at age four with Autism. She shares their journey on the Facebook page, Autism and Lillian: A Girl’s Journey and hopes to bring more awareness and acceptance to girls on the spectrum.
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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
