Being an autism parent is something that only other autism parents can understand.
There are situations we encounter and issues we deal with that most people would never think about. The great thing about having fellow autism parents as friends is they can validate that some of your parenting choices are not absolutely crazy! One thing that every autism parent can agree on is we have the coolest kids on the planet. Here’s a list of 9 other things:
1. Always, no matter what, have the iPad charged and available… ESPECIALLY if you’re going out in public.
There’s one thing every single autistic kid I know have in common: they LOVE electronics, especially iPads and iPhones. Most of them can operate them better than an adult. Raelyn has been able to navigate her iPod touch since she was about 15 months old. When a child on the spectrum is overwhelmed, overstimulated, or close to a meltdown, an iPad or iPhone can usually calm them down.
2. Most of us have entertained the idea of getting a shock collar for our kids.
Ok, not really. Don’t go call DFACS, crazy!! But there are days where it seems like a logical idea! You see, people with autism have no sense of danger. So they will wander off into the street to get a better look at that yellow car driving right at them. Raelyn once walked right into a fish pond…on purpose. She just wanted to see the fish. We have to keep our eyes on them AT ALL TIMES because you could blink and find that they have climbed on top of the refrigerator.
3. Our houses are like Fort Knox.
If you need someone to help you baby proof your home, ask an autism parent. As soon as our kids are mobile, it’s GAME ON. Our kids pay attention to every little detail (even when they seem to be ignoring you) and they pick up on things really fast. Once they’re tall enough, they will start opening and unlocking doors. They know exactly where you store the stuff they shouldn’t have (like cleaning supplies) and will relentlessly try to get them. They are curious as hell, which is really dangerous for someone who has no sense of danger. Raelyn will literally put ANYTHING in her mouth, and despite my impressive baby proofing, I have still had to call poison control three times because she gets into everything.
4. Anytime we enter a room, we immediately assess it for potential dangers and can do it in 15 seconds flat.
It is always a bit scary when we go somewhere new with our kiddos, even other parents’ houses
for a play date. Most people don’t have to baby proof as extensively as we do, simply because their kids don’t get into stuff they shouldn’t. So when we go to other houses, the very first thing we do is look around for anything poisonous our kid may eat, an unlocked door leading to outside, a drink within reach, or a bath tub full of water from last night’s bath. Even after we determine the area is safe for our wild child, we still never take our eyes off of them. EVER. Because in a split second, they can get their hands on nail polish remover and drink a nice big gulp of it. (Yes, this actually happened with Raelyn).
5. We have some unorthodox parenting techniques. And don’t you dare question them.
The moment you hear those words, “Your child has autism,” you have to throw out every parenting handbook that is supposed to tell you how the hell to raise this tiny human. Children with autism don’t always respond to the “conventional” approach to situations. For example, everyone knows you shouldn’t let you child play with electronics right before bed because they are stimulating. Unless you have an autistic child. Every single parent I know with a child on the spectrum lets them play with the iPad or iPod for a little while before bed, because it helps them wind down. When it comes to meal times, our kids usually won’t sit still at a table and eat. If they will only eat standing up in front of the TV, then that’s how we do meal times.
6. Therapy is a huge part of our lives and therapists are part of our families.
Kids with autism typically receive anywhere from 2 hours a week to 20 hours a week of therapy. Raelyn gets about 6 hours a week, between her 3 therapies. That’s a lot of time to spend with a person, so you better make an effort to form a friendship with them. Raelyn’s therapists are the people who have set Raelyn up for success. They have taught me techniques, let me cry out my frustrations, and encouraged both Raelyn and myself when meeting a milestone seems so far out of reach. They know things about my daughter that my friends don’t even know. They love getting updates and videos of Raelyn doing or saying something new, and they celebrate her victories with us.
7. We are used to going to battle for our kids.
Unfortunately in the world we live in, kids with special needs don’t get services they need unless someone is willing to fight for them. Everything is a fight, from getting insurance to approve therapies to making sure their IEP is appropriate and actually followed. We fight for services, acceptance, inclusion, education, and understanding. And we all do it willingly, because when it comes to our kids, we do NOT take no for an answer.
8. We are more sleep deprived than most can imagine.
Every parent is sleep deprived. But autism parents know sleep deprivation on an entirely different level. Our kids barely sleep and are able to function on significantly less sleep than any human should be capable of. Once our kids finally fall asleep, we will lay awake researching the latest autism research and therapies, worrying about the future, finally finishing up household chores, or just doing something enjoyable since it’s the only time we can squeeze it in with our chaotic days. We may not fall asleep until 1 or 2am and then our rugrats are ready to start the day FULL FORCE at 6am. I am not exaggerating when I say that I literally can’t remember the last time I wasn’t tired.
9. We have to schedule play dates around therapy sessions and doctor appointments.
Raelyn has therapy 4 days a week and school two days a week. So when you want to set up a play date, we have a very select number of days and times. Please don’t get annoyed if we aren’t able to get together for another 3 weeks. We aren’t blowing you off. We are just busy as hell, doing everything we can to give our kids the best shot at a future.
10. We have the coolest kids on the planet.
People with autism are the most unique human beings you will ever meet. There is literally NO ONE in the world who is like our kid. Join our kids in their world, and you will see that the way they view the world is absolutely beautiful.
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To find out why being an autism parent is pretty badass, read my post 10 Reasons Why Being an Autism Parent is Absolutely Amazing