When Special Needs Parents Can’t Be Defensive

Before my son was diagnosed with autism, people had a lot of opinions they wanted to share. A few were helpful. Some were interesting. Most felt like nails across a chalkboard by a diseased wildebeest spitting at me.

There’s a special level of frustration that comes with hearing that “perhaps you should talk to him more” when your child is struggling with speech. There were suggestions and points of view that got so deeply under my skin that I wanted to rip it off my body.

One relative even claimed that Lucas’s walking delay was because I picked him up to carry him too often. I had to calmly explain that I picked him up to carry him because, if I didn’t, he’d still be laying on the floor back at my house. The response to that was usually a somewhat embarrassed and non-threatening laugh. Ah. Ha ha. Yes. We are all having fun.

I think that’s why so many special needs parents are two ticks away from blowing the roof off whatever place they’re at. The amount of rude recommendations, whether accidental or otherwise, eats away at you until you’re ready to throw down over the smallest of indiscretions.

And then school starts.

It’s here where your offended-meter gets reset to zero. Now, rather than fair-weather relatives and fickle friends, my son was surrounded by professionals with knowledge and his best interests at heart. They offered comments and ideas based on the person he actually is rather than the person they assumed he was because they saw a kid with autism on an episode of Grey’s Anatomy three years ago.

“We were thinking that maybe you can start sending in some healthy snacks with his lunch.”

You read that comment in a communication notebook from school and your brain wants to take you to some self-centered places. Healthier snacks? What does that mean? They think I feed these kids garbage? How dare they? They aren’t in my home! You don’t know me, lady! Who do you think you are? His teacher? Oh wait…she is. She’s only saying it because she thinks it will help him.

Rather than write a long essay about how I do feed him well and try to do what’s best and how dare anyone… blah blah blah, I do what I’ve learned to do through the years. I write back, “Sure. Thanks!” I know that they’re suggesting it because they want the best for him. I do too.

It’s not about me. It’s about Lucas. It’s about making sure that he’s living his best life, learning the skills he needs, and progressing in the most physically, emotionally, and socially healthy way possible. If I’m doing something that needs correcting, I want to be corrected. I want to do what’s right for him.

Not only do you stop getting defensive about suggestions, but also about listing your child’s skills. You stop embellishing the achievements. Prior to his school years, I would overstate his progress in mixed company. I’ll never forget the day that ended.

We were sitting with his coordinator, planning his transition from in-home service to autism-friendly special needs preschool. As we did, they questioned what he could and couldn’t do. The entire meeting was depressing. Every other word out of my mouth was “no” or “not yet”. It felt like he wasn’t doing anything when it was all laid out like that.

By the time they reached language, I couldn’t take it anymore. They asked if he spoke any words. It felt like a punch. I needed to defend my boy. So I told them what I would have told anyone.

He said “Bye.”

The administrator looked shocked and put her pen down while our coordinator became instantly frazzled. I was used to getting a polite nod when overselling his milestones. I wasn’t used to getting an incredulous reaction like this one.

I could sense the confusion in the admin’s voice when she asked me to repeat what I said, as if we were talking about a completely different boy. I tried to explain, while digging myself an escape hatch.

He did though. The other day, I said “Bye” and he said like “Bah.”

Before I finished, our coordinator gave me a sympathetic stare.

I know what you’re doing. It’s OK. There are definitely times to highlight moments like that. This isn’t one of those times. This is the time to lay it all out there. To get him the services he needs,

My heart sank and my mouth shut. I didn’t say anything else for the rest of the meeting aside from shaking my head no to the laundry list of things he still needed to work on.

That meeting gets repeated in checklist form nearly every year. The school sends home a sheet that rips my heart out one question at a time. I get to view his struggles one by one with a succession of “never does” check boxes.

I want to tear it up. I want to scream. I want to write them long stories about how he “almost did that”, but I don’t. In the end, although it goes against my instincts as a parent, I simply agree. My son doesn’t do these things. I admit it. Please help me teach him how.

That’s why I do it. When it comes to helping my kids, I’ll endure anything. For those who have my child’s best interests at heart, I can’t be defensive or apprehensive. I can only be proactive. I want professionals around us to be able to say the same.