The following story was shared with Alliance ABA Therapy. Names have been changed for privacy.
My name is Linda, and I’m 47 years old. I have a degree in human kinetics, and my husband John and I owned a gym for about 10 years, which we opened when we first got married. It took us a while to have kids.
When we had Brody, we had a really hard time adjusting to being new parents, and honestly, it was a surprise we had kept the gym open as long as we did because neither of us have ever been great businesspeople. We made the very easy decision to shut down the gym when Brody was diagnosed with autism spectrum disorder just after he turned two.
We got pregnant when he was a year and a half, so dealing with the emotions of his diagnosis and my second pregnancy was a major rollercoaster, let me tell you. John threw himself into work, and I found myself really managing a lot of Brody’s stuff all on my own – his appointments, his schedule, all of it. John wasn’t unkind, and I know he’s always done his best, but with one income and just kind of knowing, deep down, this was really emotionally tough for him, I forgave his physical absence. I figured he was where he needed to be, and so was I.
Brandon was diagnosed when he was a little older than two as well. It’s weird to say, but it wasn’t a surprise the second time around, because it was like we were expert at finding the signs. And hey, let me tell you, no one is ever expert at autism. No one. Yeah, there were many similarities, but they are so different from each other, and some of the things that worked well with Brody were just disastrous or completely ineffective with Brandon. Or things that we’d tried with Brody that never really worked were great with Brandon.
Billy is our youngest, and he’s four now. He has autism too. He was a lot different from the other boys, so this one was a surprise. He’s always been super affectionate, started babbling early (we figured that was just a thing with the baby – they hear so much and have all kinds of ‘teachers’ so it’s faster for the youngest to grasp everything). He makes eye contact. He’s pretty communicative, if not crazy hyper sometimes.
What’s similar in all of them is that they have a really hard time regulating themselves, and they get really hyper-focused on certain things, like specific toys or ideas. Like Brody is really into dinosaurs, almost obsessively. Billy will take one toy car and it goes everywhere, like the dinner table and the car and if he forgets it, we’re in for a ride. Brandon will watch the same movie over and over and over again.
I’m still trying to find myself in all of this, and sometimes I feel like I have no identity other than being a mom. Being a mom to autistic kids, no less. I haven’t heard anyone be condescending or unkind to my face, but I am sure people pity us, like “Oh, have you heard about Linda and her kids? That poor family.” But I wish I could say to all of those people, if they’re actually saying anything, don’t – don’t pity us. We’re happy. The kids are beautiful, healthy, wonderful people. So we have challenges. So our house looks a little different from yours. Nothing is wrong with my boys. It just means our adventure is different.
But yeah, if I can say something selfish, it’s that I know I have to rediscover a little bit of myself to be better for my kids, so I have more and more to give. My husband is more present now… he has to be. But from my perspective as a person, as a human all by myself, I would be lying if I didn’t say it wasn’t tough and there are days I want to throw in the towel and just have a day where I wasn’t second guessing everything. But is there any mom anywhere, a mom of any kind of child, who doesn’t feel that way some or all of the time?