He doesn’t need to be fixed; he’s not a broken toy.
I didn’t have the sparkly, glowing pregnancy everyone talks about. The weight wasn’t just in my tummy, nausea dominated my life 24/7, and all I could think about was getting the baby out.
Throughout my nine-month journey of torture (and yes, I’m aware it’s a gift to be pregnant, but that doesn’t mean I have to ENJOY it), I was told all sorts of cliche advice.
“Oh, just wait until the baby is here.”
“You think you’re sick now? Wait until you have a baby to take care of.”
I shrugged it off as well-meaning friends and family trying to help, all the while I had to bite my hormonal tongue.
When it was finally time to deliver my son, it was traumatic. He was whisked off to NICU and I wasn’t allowed to see him for 24 hours due to a critically high fever.
The only thought I had was that I wanted him to be healthy. And after the initial 24 hours of his life, he was: 10 adorable toes, 10 kissable fingers and a gorgeous head of hair. I thought I was home free.
His first year was mostly him meeting his milestones early or on time, with celebratory dancing and singing to show him how much I really appreciated and loved him. Then, the milestones slowed down or just stopped altogether. Concerned, my husband and I sought the help of several doctors who told us that we may be dealing with autism.
I’m ashamed to say that I was one of those “not my kid” parents. I had no idea what autism really was, and I figured my son just had a delay in his developmental growth. Autism was the new ADD and everyone had it. What I failed to see was that he did, in fact, have autistic behaviors and that it wasn’t the death sentence I imagined it to be.
Completely naive, I never realized that I had committed so many faux pas when speaking with parents of other special needs children. Everything people were saying to ME annoyed me in one way or another, yet, I had said those very same things before I was a special needs parent.
After a few years of research, learning, and understanding, I no longer feel insulted or annoyed by people’s comments. And I truly have my son to thank for that, because he has taught me how to have patience, something I severely lacked before he entered my life.
If you happen to have a friend or relative who has a child with special needs, here are a few things I’d try to avoid saying:
1. "I’m so sorry."
When someone dies, you say you’re sorry. When you spill hot coffee on your boss, you say you’re sorry. Please don’t say you’re sorry when you hear my son has autism. It’s not worthy of an apology.
You might think it’s this horrible condition, and at times, it can be, but saying you’re sorry makes me feel like my son is about to die, which he’s not. He has a disorder, much like the rest of America. Did you know that 1 in 68 children have autism? Furthermore, 1 in 25 adults in the U.S. has a mental disorder in any given year, so being “normal” is really not the norm anymore.
2. "I don’t know how you do it."
This is a tough one. I want to think it’s a compliment and you’re commenting on how strong I am, but really, I have no other choice. When you’re put into a situation where the human being you pushed out needs you, everything else goes by the wayside and mama bear mode turns on. This tiny little person has no other advocate but you; I can’t imagine my life now any other way.
3. "You should get a second opinion."
*Screams into pillow* Thank you for your concern, but anyone who has gone through the autism ring, or any other special needs road, has been to more than one doctor and/or specialist. In fact, just to get my son into school, we had to see a handful of doctors and therapists. We’ve had second, third, fourth, and fifth opinions. He has autism.
4. "My aunt’s neighbor’s second cousin went to school with a guy who knows someone with autism. If you have any questions, let me know."
I feel guilty even putting this one here because it may make me sound like a brat, but unless you’ve handled autistic children personally, there’s NO way you can possibly relate to anything I’ve gone through. Not only that, but autism doesn’t fit into one perfect little classification. There’s an entire spectrum, and every single child is different.
5. "I have a chiropractor/holistic doctor/witch/car mechanic that can fix him."
He doesn’t need to be fixed; he’s not a broken toy. He’s my baby. I love him. He has taught me more in the five years he’s been alive than I’ve learned in the 30 some-odd years I’ve been around.
6. "But he doesn't LOOK autistic!"
Say what?! How is he supposed to look? I get that there's a preconceived vision of how certain disorders should appear, but every child is different. Every child has a different FORM of autism. There isn't just one specific look. And if I can be honest, my child is adorable, with or without autism.
7. "I read an article that said if you did X, Y, Z when you were pregnant, it raises your chance of autism. Did you do that?"
Wow, thanks for the second-hand information. And I appreciate your curiosity, but I already have a tough time with blaming myself. As a friend, you should curtail your need of information out of respect for the parent. I already feel like sh*t, so I don't need a reminder that my son is the way he is because of something I possibly did or didn't do during pregnancy.