Since I began writing openly about our family and specifically my eldest son’s diagnosis, I find myself being asked the same questions, over and over again.
In an effort to proactively provide information, and possibly infuse a little humor into what can be awkward moments, I have composed the following –
Frequently Asked Questions of Mommas with Children that have Aspergers
1. Is it really like Parenthood?
I love this question and the answer is yes and no.
We watched Parenthood before we received my son’s High Functioning Autism (Aspergers) diagnosis. Every single scene that involved Max, looked an awful lot like our life. My husband and I would look at each other and freak out every single episode. So yes, the writers do a very good job of keeping it real.
And no, because you never get a sense of how constant all of this is for us, and for my son. Max’s scenes total maybe 12 minutes of the entire program. There are often times where Max’s parents are snuggling together in bed and having long talks (and even intimate moments, whaaa? Apparently Max doesn’t have the sleep issues so many of us face). When they are at their family’s house, they have conversations, play games, interact loudly and sing. There are commercial breaks. You actually get to hear about other family member’s stories.
The constant that is autism in our lives is just not able to be accurately presented in a prime time show. And that’s OK. If they were somehow able to capture that, it would be too stressful to watch anyway. I love Parenthood and I love watching all of it – not just the character that reminds me of my son.
2. Well, Asperger’s is much better than “actual autism” isn’t it?
Every time I am asked this, I am completely at a loss. At times I have tried to explain that Asperger’s and High Functioning Autism are the same thing. But then I feel bad, like maybe I am making more of this than I should. So, the next time it’s asked, I try to stress how difficult I am sure it is for families that have children with autism diagnoses at the less functional end of the spectrum. But then I feel like I am contributing to misinformation about the autism spectrum in general.
My new answer is, I can’t speak to any experience other than my own. Every single child is different and every family is different. That’s the best I got.
3. He looks totally normal. Are you sure about his diagnosis?
I am happy to send you the doctor bills and the therapists assessments if you really need proof, but let me say this – no momma I have ever met with a child on the spectrum would have described herself or any of the doctors as overzealous. I know there are many people who believe over-diagnosis is a problem. That certainly was not our experience. Most of the stories I have heard involve families trying to get resources, attention, and diagnosis for their children for years, and still not getting the help and medical attention they need.
So yes, I am sure. And while we are at it, please be careful. In your rush to judge a child (or adult for that matter) by what you see on the outside, you are doing a vast disservice to what is happening on the inside.
That, and it’s hard enough without feeling like we need to somehow prove our son’s medical history.
4. If you keep __________, you know he is going to ____________, right? OR If you would just __________, you know he’d stop ___________ right?
I can fill in these blanks any number of ways. For example, “If you keep swaddling him, you know he is not going to sleep well when he is a toddler, right?” Or, “If you would just force him to wear socks, you know he would stop melting down every morning when it’s time to put on socks, right?”
There is a fine line between appropriate accommodation and spoiling. No autism momma I know has this one figured out. Even my son’s therapist isn’t always sure, but she has taught me this – error on the side of grace. We have no idea how difficult and painful it can be to live in our children’s sensory overstimulated bodies. There is something to be said for respecting their limits.
If this were fixable by modifying behavior, trust me when I say, it would already be fixed. It’s safe to assume that for most parents in this situation, the battle began by focusing on behavior and discipline. And no matter how much we forced and set limits and removed privileges and let them cry and enforced the boundaries, it didn’t work.
That’s why we have a diagnosis.
5. Well at least your insurance will cover it all, right?
Bwahahahahahahahahahaha. Bless your heart.
No. It doesn’t. Not even a little.
6. Why is he wearing shorts in the winter?/What’s with the crocs?/Why is his hair so long?
Please see #4 (above) and then read this article on sensory processing disorder for more information.
7. How do you do it?
This one is the grand daddy of them all. The only answer is, we just do. We do it because we have to and because we want to. We do it because what other choice do we have? We do it because we love our children as fiercely as you do yours, and they need us to. We do it because it’s what we have been called to do.
The truth is, although I am having some fun with it, I’m glad you ask any question. I’m glad you seek to understand and have a dialog.
And there is one thing you will probably never think to ask us autism mommas, but we are learning everyday just the same. That question?
What are the best parts? Because although there is the hard stuff and the grief and the messiness and the crazy, there is also more beauty and joy and love than we ever thought possible. They go together – the good and the bad.
In that respect, we are not different at all. We love our children. We want the best for them. We struggle to know what that is sometimes, but we don’t give up.
And that is always the answer.