There are literally hundreds, if not thousands of people who are involved in my child’s life. At the same time I think it’s really easy to feel isolated as the parent of a child with the type of special needs that my son, Little J, has. His over-arching diagnosis is Fetal Alcohol Spectrum Disorder, or FASD, which includes behaviors similar to ADHD and mood disorders – what some people, including me, consider to be “invisible” disabilities.
If you are parenting a child with an “invisible” disability, like I am, and you go out in public and your child has a tantrum or an outburst or rages or otherwise acts up, you are instantly judged as a bad parent. People just don’t understand a child who looks perfectly “normal”, yet whose brain-based disabilities impact behavior and emotional regulation. I cannot tell you the number of times I’ve been told that I just need to spank my child – by perfect strangers and acquaintances alike. Family and friends don’t get it, and although they may care about you and your child they can also be quick to judge – based on assumptions they’re making about your parenting, or about witnessing isolated incidents, or through caring for your child for a couple of hours when he was “perfectly fine for me.” Professionals – even those whose profession is helping a child like yours – need to be educated about your child. And support is hard to find. Add that to the exhaustion and unrelenting stress of trying to find answers to your child’s problems as well as the day-to-day management of your lives and it’s easy to become a hermit. A lonely, stressed-out hermit.
But it doesn’t have to be that way. There was a time in my life when I felt immensely isolated. Isolation is a self-fulfilling trap, but I’m happy to report that although I hit a low point about 2 years ago I don’t feel alone any more. Here’s how the isolation happened for me, and how I found my way out of it:
Sometimes I’d go out with my boy, and we’d get stared at and whispered about and some people would even say stuff to my face, and it would get embarrassing. So I’d dread going out. It was also hard to take my child anywhere and expect decent behavior. It’s different environment for him, and different causes anxiety and drama. So I stopped going out.
I’d hang out with my friends and they talk about how great their kids are doing in school or sports or whatever, and I’d just vent and I’d end up sounding like a big fat complainer. I’d feel jealous or angry or like a downer and so…I quit going out with my friends.
I’d talk to other people who were involved in my child’s life, at school, for example, and I’d get nowhere. It made me feel crazy.
I’d talk to my child’s doctors and half the time I’d end up educating them on the best way to handle my son. It got exhausting.
So alone, crazy, and exhausted. Plus having to deal with my baby. Not a good place.
But here’s how the isolation ended:
I found people who were JUST LIKE ME. People who GOT IT. Maybe they were on the Internet, where a lot of moms and dads of kids with invisible special needs hang out – on FB or this blog or the Easy to Love but Hard to Raise blog or people who send me emails because on something of mine that they read. Because of writing about my son’s issues I made connections locally, so now I have real-life mom friends of kids like mine as well. They’re there. You just have to look for them.
We switched schools. Thank goodness. We homeschooled for a year then found a great little school that really gets my child. In my son’s current school there are many kind teachers who acknowledge my son’s difficulties.
I also started leaning on my family more out of necessity. And I started talking to my friends again, because I figured if they were real friends they’d want to know about my troubles. And in doing so I realized that they wanted to listen to me.
And I think about the people reading this blog right now and know, without a doubt, that I AM NOT ALONE.
The isolation ends. Because we are truly not alone in this.
And from leaving isolation behind comes ACCEPTANCE. And you can move forward from there.
Which is basically what happened when we finally got a correct FASD diagnosis for our son.
It’s also what happened when we found the wonderful, tiny, outside-the-box special needs school that he goes to right now.
And it’s also what happened when I stopped isolating MYSELF, starting seeing my friends again, and started telling anyone who would listen that my child has special needs. He is developmentally delayed. That’s why he acts like that! (And yes, I say this to people in the grocery store, parents at track practice, and to anyone who raises an eyebrow at the way he – or I – am acting) And no, he doesn’t just need a spanking. So give him – and me – a break.
Adrienne Ehlert Bashista is the co-editor of and contributor to Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, and is also the author of two picture books about Russian adoption. She’s had stories, essays, and articles published in a variety of journals, both print and on-line. She is the owner of DRT Press. She was a school librarian for many years before giving it up to devote more time to the rest of her life. She chronicles her adventures raising her son, recently diagnosed with FASD in her blog, A Square Peg, a Round Hole. She also writes for the blog for Easy to Love but Hard to Raise and her writing/speaking website is adriennebashista.net. She lives in central North Carolina with her husband, two sons, two dogs, 21 chickens, and a lot of bees.
