Okay. I’m going to vent here a little. And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse. A Facebook discussion really got this topic back on my mind. It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.
So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family. This phenomenon is not restricted to parents of Autistic kids. I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster. I think the meme below, created by and for parents of NTs, illustrates it beautifully.
The difference is, it happens a lot more often and more dramatically to parents of Autistic kids. And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment. …and setting your child up for more misery (!!!).
I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event. In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad. Poor mom and dad, who can’t even experience a proper birthday with their child. These parents will go on to repeat the whole fiasco next year. And they will grieve it. Again. And their child will suffer. Again. Folks, this is completely preventable. It’s not your day, it’s your child’s day! Stop singing Happy Birthday if your child hates it. Stop inviting all these people over. Figure out what works for your child to make it a special day and do that.
I see it with other stuff too. Trips to places the child is “supposed to” enjoy but doesn’t. Child doesn’t want to sit on Santa’s lap. He or she is screaming, self-injuring, melting down. Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa. But your child didn’t. Guess what mom? Stop taking your child places he/she cannot tolerate and this won’t happen. It’s that simple. There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses. Every day after work his Dad took him to ride his favorite bus lines for a few hours. That is what he loved, and so that is what they did together to connect and bond. In the end, shouldn’t it be about our kids? Stop making it all about you. Yes, it’s hard sometimes. You know what, parenting is hard. Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.
When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations. When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective. I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos. And it really makes all the difference. Don’t set yourself up for more grief, more disappointment. Don’t make your child suffer for your own rigidity (hah- do you see the irony?). Find a way to be flexible, to grow your parenting into something that fits with your kiddo. Welcome to Holland. It’s not Italy, but it can absolutely be great, if you would only give it a chance.
3 thoughts on “Dear autism parent…”
ugh.. kristina.. i feel like you’re talking to me here. guilty as charged, as far as often taking on that woe-is-to-me attitude. there have been so many times where i just feel like a disaster of a parent because my expectations were blown and then i got upset and then i feel stupid for feeling that way and for being selfish about xyz. so thank you for the reminder. as you said, this does not just apply to autistic children’s parents. none of my kids have labels, but they are extremely different from each other and two are socially challenged in different ways, so finding that “awesome family” sweet spot is so hard. i don’t consider myself great mom material now that i have kids, and i often feel like i’m an imposter and really bad at it. your message of just accepting your reality is one i need to internalize…
LikeLiked by 1 person
hugs I’m sure you are being way too hard on yourself! We all have our moments. It’s a learning process and we all make mistakes. Hugs