Autism Moms Know!

“Once you learn to appreciate the small victories there is no need for a finish line.”

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The symbol for Autism is the Puzzle Piece. There’s some debate about changing it, but to be to honest, the puzzle piece always seemed perfect to me. My son isn’t missing a piece. Hell no! But there are just so many unanswered questions about Autism – exact causes, why one therapy works for one child but not for another, how best to manage behaviors, etc. There are so many unanswered questions – which for me, makes Autism one big puzzle piece. Also, just about every day I learn something new about my son. He’s not a puzzle; he’s just THAT impressive that it’s taking me longer to truly understand him. I mean, he is my son after all.

I can tell you one thing that we do know- we know each other. Autism Moms and Dads – we can recognize the tired eyes, the inability to truly relax, the amazingness of every small accomplishment, the wonder in our gaze as we look at our kiddos. We can see that in each other.

Recognition…

Last year, I wrote on Facebook about one of my experiences traveling. Anyone who is a parent knows traveling with kids can be a challenge. I always figured that as my son got older, it would get easier. But that’s not really the case, is it? I have to plan our trip like a Commander in the Army. Flight time can’t be too long. Layovers help to burn energy, but they will add to frustration if the airport is super packed or if the layover lasts more than three hours. I pray the airport staff has had some sort of sensitization training so they understand not all disabilities are visible and if I go in the handicap lane, I won’t get in trouble. I need to figure out what food options are available for a super picky eater – and always, always travel with backup. Backup snacks, clothes, extra wipes, lots of reinforcers, battery charger for the iPad, blanket or big sheet in case he needs to block out the world, noise reducing headphones, extra medication, because you never know what might happen… Well, you get the idea.

The Unexpected…

But even with that planning, there’s always something unexpected. This particular trip, I was traveling through the Panama airport and at the time I wasn’t very familiar with it. To make matters worse, it was under construction. After we got off the plane, I was in a rush for a bathroom. I can’t go to the bathroom on the plane if Mateo doesn’t nap because I won’t leave Mateo alone. I can’t bring him in such a small space, because- well, hello, claustrophobia- but also if I squeeze him in, he’ll just open the door and run out. Yes, laugh if you must, but I know this from experience. Don’t worry, I won’t go into any more details about THAT story because yeah, TMI. Anyways, I’m rushing now because I really need the bathroom and the family bathroom I find is out of order. We walk almost the whole terminal and I can’t find another. By this time Mateo is hungry and has spotted the Dominoes Pizza sign so he is trying to pull me in another direction. But yeah, when a girl’s gotta go- he’s gotta wait.

So I finally decide to go to the Women’s bathroom. I’m always super hesitant about this because I have had run-ins with people who complain about why I’m bringing such a big boy in the girl’s bathroom. Honestly, I can’t leave him alone. While he can go potty on his own, I won’t send him into a Men’s bathroom by himself either. He’s nonverbal, doesn’t yet quite understand personal space, and he loves water. I wouldn’t put it past him to turn on all the faucets and just stay there playing in water. There’s no choice; we gotta stick together.

Tired and anxious and carrying a bag that weighs a ton, I practically drag my starving kid for a mile. I finally decide to enter the Women’s bathroom. Thank goodness there is only one person in front of me and she’s typing on her phone like her life depended on it. Then it happens. I remember it like yesterday. Out of the stall walks an older lady. She’s holding tightly to a young man – about 6ft and probably at least 18 years old, maybe older. She looks at me clinging to Mateo who is bouncing like Tigger. We smile at each other. She looks as anxious and as tired as I do. We recognize each other. We know the struggles we face. In that one moment, that smile, that shared emotion, gave me enough of a boost to face the remaining hours of travel.

Living it…

As autism moms and dads, and in some cases grandparents and godparents, we go to doctors, therapists, specialists to try and get help. And they help! I credit the majority of Mateo’s development and journey to the amazing teams that have worked with him throughout the various countries. But even recognizing that, I am comfortable enough to say that if you don’t live it – day in and day out- no amount of schooling or work experience can really make you ‘get it’.

You KNOW the constant worry. You KNOW to appreciate and celebrate the smallest of victories. You KNOW your child is way more about his abilities than his diagnosis. You KNOW that sleepless nights can continue for years and years. You KNOW the constant self-doubt that weighs on you. Are you doing enough; is this the right way; are you making the best choices for you child? You KNOW that so much of the world has no clue how to enter his or her world; but you can! You KNOW that world is amazing. You KNOW your road will be different and more challenging, but the rewards will be even more than you can imagine. You KNOW what it means to be an Autism Mom and Dad and that most days it can be freaking great. A roller coaster ride that you take everyday- but great nonetheless.

And yes, without even knowing it, we do have a secret club and our secret handshake? For us, it’s all in that smile.