Autism used to be a scary word to me. A four letter word, with three extras. That was until I got Hilo's diagnosis. Now autism isn't anything but an adjective. Descriptive but not the entire noun. Hilo isn't autism only. And my first born son isn't scary. Truly he's been the most happy, quirky, loving child I could have ever wished for. His diagnosis hasn't consumed the child he was before the "A-word" was said. Hilo is Hilo, with a small side of autism along with many other words I'd use to describe him.
What Autism is to our familyOur days are filled with much sensory input. His mornings for four days a week is at preschool with other kids diagnosed with ASD in a special controlled classroom to make his brain learn in the way that it does best. So after a long day of working on actives promoting independence and basic skills, Hilo is ready to decompress. He eats lunch at his own will. A movie or our superheros occupy his relaxation while he also manages to run around, bounce off the walls and literally bounce on the couch. That is relaxing to his mind. Hard impact sensory input like jumping, wrestling, deep compression on his joints, and squeezing. Some days are better than others. There are days where I have to drag him down the stairs to wait for the bus to come, and some he jumps down on his own with a big smile. Kicks are thrown on the hard days. Kisses and hugs are given on the good ones. Just like any other child his age. It isn't something rare to see in a toddler. One thing I know Hilo is without a doubt is a hard worker. He tries so hard. Always eager, in his own way, to try to do what you ask while still doing it the way only Hilo can. On the days that he tries hard but it doesn't work out, I have to look away from his eyes that can cut through my heart. To see anyone almost break because of their efforts not being enough is just an awful feeling but when it is your own son who battles things everyday, it can be especially heartbreaking. But he's not there to give up. I always remind myself that he isn't giving up. He asks for help when he needs it the most. Some times I must remind him to that not everything has to be done alone. So every day is about give and take. Learning, loving and taking it ONE step at a time. What Hilo has taught mePeople with autism see the world in a different light. Like blind to some colors yet other colors are just so vibrant and indescribable. By getting down on my knees making myself on his level, I'm able to get just a tiny view of what he finds so fascinating about the things he loves. I've learned so much about autism itself that I changed my vision of how I see things like the movies, or the circus, or simply a day in the park. Now that I understand why Hilo runs off to be by himself for a few minutes, I'm able to accommodate his needs more than just simply ignoring them. Education is another thing, too. Though his school has been excellent at handling Hilo's "special needs" and thus placing him in an appropriate setting, I'd still let his teachers know what excites, distracts, averts him so that he can be taught in a way that benefits him. He's a visual learner. Autism does that to the brain. So I'll have to end up telling almost every single teacher he ever has that visual and pictures are important for understanding in Hilo's mind. Everyday is a new adventure with Hilo. The roller coaster of up and down, not knowing what comes next. I've learned the surf the waves and crash land safely, because the crashes do happen. Learn to get back on your board and surf again! What to expect with autismIf you are a parent who is preparing for, or has just gotten an ASD diagnosis, there are so many things that you must know for your child to grow. You must do sensory play. You must learn coping mechanisms. You must assimilate from NT to the not. And learn all the handy abbreviations too. It is all a surprising amount for just one parent to know. And boy, are you going to find millions and millions of things on the internet and in books about what you need to know about autism, and how to be the perfect parent, and what to do in any case of emergency. Life, however, isn't always so urgent. It can be laid back, go-with-the-flow kind of stuff. Hilo is extremely low-key, and not a handful at all. We lucked out. But still, there are universal things that I believe every parent should know about living with autism in your family, in your house and in your heart. 1. Boundaries. Know when you push just enough, when to pull away and realize they will never realize your sense of personal space; just their own. 2. Non-verbal doesn't mean silent. Trust me, my son has been non-verbal until recently. My house hasn't ever been quiet. He's the loudest, noisiest kid I know. 3. Picky eating doesn't always mean picky eater. Visuals are everything. Sometimes if you arrange the same foods they refuse to eat in a different way, they'll eat it. No rhyme or reason. 4. Animation. Get used to it. Anime and other animated shows are favorites because there aren't actual humans. Connecting with others is difficult, but cartoons are much easier to understand and connect with. 5. Outbursts aren't anger. Don't take it personally when they yell and scream. They aren't angry when they flip out or have meltdowns. The brain is trying to calm down. 6. They love you. No matter how severe or mild of autism, they love. They're people. And people with autism love deeper. Love your face, your presence, the ways you try to make things easier for them. Autism impairs their ability to express emotion but that doesn't mean they still don't have those feelings. Don't doubt their attachment. Just know it's there. Learn more on life with autism
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AuthorGabrielle Rae is a special needs, stay at home mommy of two boys. She enjoys reading and writing novels in her spare time. @onbothfrontsArchives
August 2018
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