Thank you to my wonderful friend Sarah Kushner for writing this very personal guest post for Glass of Win while I’m away at the hospital. – Rachael
It was only a couple months ago that I sat at this desk I am at right now, when my heart hit the floor and my life… my very being… changed. It was only a couple months ago that I got the results back from the child psychologist. My oldest child was diagnosed with Autism.
My little rock star, my Emily, had been given a label… one that she will carry with her throughout her life. I hung up with the doctor and cried. My first thoughts were dark, I thought about the battles… with programs… with teachers… with bullies…
She has always been “different” and though I suspected something could be wrong, I admit I had some heavy denial. “I was a quirky kid… her daddy was quirky… we’re just a big quirky bunch!” It was quirky that she would pull out everything from the fridge and line everything up on the floor… It was quirky that she took longer to talk ( so did her daddy after all )… It was quirky that she was so independent and didn’t cuddle… Complete lack of fear? Quirky!… Wouldn’t touch sticky things? Quirky!… Wouldn’t let anyone touch her head? BAH… she’s just quirky!
But Autism? No… couldn’t be.
What I have discovered in the few months since is that I’m becoming a much tougher person. I also feel like I’m flying through the air on a rocket. Life is moving faster… things are on timelines and deadlines and tight schedules.
There are things I’m learning day by day. It’s the old adage “one day at a time.” But here are some things that I would give as advice to other parents, should they find themselves hearing the diagnoses that their child has autism.
Get Over Yourself: This is a time when your child needs you to be solid. Take a brief time to soak things in, and get to work. You need to start setting up appointments with school districts, counselors, therapists… You need to keep your head clear for the barrage of questions about your child. You will feel on the spot… guaranteed. Stop pitying yourself. Stop blaming yourself. This is not about you, and its not your fault. Your child doesn’t need tears right now… your child needs action. So, cry… feel fear… but move on quickly. Time is ticking…
Resist Your Urge to Kill: Inevitably all parents go through the moment where a stranger gives some glare at you while your child is acting up. Some stranger will give unwanted advice… When your child has autism, a trip to the grocery store becomes over stimulating fast… You will soon discover that certain odd behaviors are how your child deals with these situations. For Em it tends to involve yelling, nothing in particular, just yelling. She also wants EVERYTHING… and that leads to meltdowns. She gets frantic… she sounds like she’s hyperventilating… Then some old lady walks by me and gives me the “Control your brat” look. Or, there are the nuclear meltdowns… Em’s last one got me the unwanted advice from a cashier “Just ignore her. I have two kids, you just ignore them they stop.” I lowered my gaze… I controlled my temper… and calmly said “NO, actually she wont. She will get worse and worse until she throws up.” Which was why I was in the checkout, trying to get the hell out of there. The point is though, EVERY DAY you will want to cave someone’s teeth in with your fist. Getting into brawls and landing in jail won’t do anyone any good.
Fight for What You Need: Not with fists… But, you may need to yell a bit. The sad truth is… paperwork and bureaucracy goes slow… funding is low… there are a LOT of kids that need help other than yours… You may need to call people every day… You may need to call them 5 or 6 times a day… You may need to be the naggy-est most annoying parent on the planet. You need to do whatever it takes.
Research: Without overdoing it, learn everything you can about autism. Use common sense when you read… Try to read up on actual science and not a random theory with no science backing it up. Just learn, be educated. Learn proper terms and vocabulary so you know what people are talking about.
Support: You need support… no matter how much you think you don’t. Find other parents. One thing you will find out quickly, parents of autistic children stick together and are super supportive.
Be prepared!: You know how I was saying you would feel on the spot. You may feel a little nervous… and forget basic info. Bring notes with you about your child. Write down all the info you can about what they do. When did your child first sit up? Walk? Talk? Do they mix up pronouns? Do they ask to play with kids they know when they aren’t with them? Can they draw shapes? Write it down, write it ALL down.
Get a planner: I’ve never been the hardcore date-book toting professional… I jot down things on Post-Its and put it by my computer and I’m done. But now? I have what appears to be the worlds largest calendar by my desk, a planner in my bag and my ical app is set to chime an alarm several times before an appointment… There are now so many appointments (and I’m only getting started) that I can’t keep them all straight… and it really would be too many Post-Its.
Honestly though, the most important rule… the most important thing you need to remember for the rest of your child’s life… don’t pity them, don’t coddle them, don’t treat them like frail little birds… Because your child is amazing and you know it. They are the same awesome kid that they were before they got that “label”. It’s just now you know some details about things that are holding them back. Imagine how awesome they will be once you get some behaviors under control. They don’t need pity, they rock. They are stronger than you can ever imagine… and you may need to hold their hand now… but you won’t always… so don’t hold them back. Love them like you always have and always will.
