Maybe you need to hear this today. Or yesterday, perhaps. Me? I need to hear it everyday.
I have a major pet peeve when I hear people say “I LOVE Autism!” “Autism is my PASSION!”. I’m a speech pathologist- I have a Master’s Degree based on my ability to utilize the English Language to convey specific meaning to my communication partners so yes- I get hung up on semantics. You do not love Autism. Maybe you love helping kids with Autism. Maybe helping families who just received a diagnosis is your passion. But you do not LOVE Autism. If you do, then you and Autism have never met. Cause Autism sucks.
My kid? Nah- he’s perfection on a silver platter. But my kid is not Autism. It’s just something he happens to have.
Back to the “Autism sucks” stuff. It does. And all the feelings we feel as parents of children with Autism? Those suck too. But let me let you in on a secret- having those feelings means you’re doing it right.
The punch to your gut that makes your stomach flip five ways to Sunday when you realize you can’t stop pretending “nothing’s wrong” or “he’ll come around”? That’s ok. It means you care about your child and the challenges he or she will face and the future that awaits them. You wouldn’t feel literally nauseous to your stomach, barely able to get dressed to go to your Developmental Pediatrics evaluation if you didn’t care what the future holds. I describe that so vividly because I lived it. Twice.
The exhaustion you feel that makes you feed your children tortilla chips for dinner and watch an extra episode of Clifford the Big Red Dog so you get an extra 23 minutes to “just be?” It’s because you have made a commitment to your child and took them to back to back speech and OT appointments, met the ABA therapist right after, and stopped every two hours to keep your child on their sensory diet. You’re exhausted because you’re putting every ounce of energy you have into making your child as successful as they can be. I tell people all the time that going to work is the easy part of my day. When I get home is when the real work begins. Parenting a child with Autism and making the right moves at the right time is the most challenging thing I’ve ever done.
The almost paralyzing frustration you sometimes feel that suffocates you and literally makes it hard to breathe when someone says the wrong thing or gives the wrong look at the wrong time in the grocery store? It’s because you love your child unconditionally and would walk through fire to never have to have them know how ignorant some people can be. Loving someone this much is exhausting. But incredibly rewarding.
This isn’t a negative post. It’s actually the opposite. It’s intent is to put a positive spin on all the feelings I described above. You feel those feelings because you’re doing this right. If you weren’t worried about your child, didn’t care if he reached his maximum potential, and didn’t want everyone to recognize how AMAZING of an individual your child is, then you’d never feel sick to your stomach, you’d always get a full night’s sleep, and you’d be oblivious to jerks in the cereal aisle at Costco.
Keep on keeping on, mamas. (And daddies, aunties, grannies, mammies, pappies, big bros, little sis’s- whoever you are, keep on trucking). I won’t tell you to “Keep Calm” because that’s impossible. Just keep on. If you need to cry or yell or curse along the way- that’s fine. Just. Keep. On. You’ve got this. Because you know there’s too much at stake if you don’t.
You’re doing a great job. I’m here for you. I believe in you.