Yep, it’s here again.
Autism Awareness Month.
And today is the Grandaddy of all days in the month of April. World Autism Awareness Day.
Through the efforts of Autism Speaks, landmarks around the world will illuminate blue tonight. From the Sydney Opera House to Christ the Redeemer statue to the Empire State Building to the “Welcome to Las Vegas” sign (a favorite). Locally, my ‘hood will once again show their support by switching out their front porch lights to nice blue incandescent glow.
Don’t get me wrong. I’m fully on board with raising awareness and educating others on autism by any means possible. Seriously, if it takes someone asking about a weird blue light bulb, then hey – all for it.
However, in our world, we live it every day. And that’s what I want to make anyone stopping by my blog aware of today. Autism is the invisible disability that is elusive to many people’s eyes. It’s a roller coaster ride that will never end. The Tilt-A-Whirl that just won’t stop.
Every day, there is always a potential meltdown around the corner. It lurks in the remote, the cereal he eats every day, or in the bathtub. One tiny slip and the progress from the day can be wiped out by a meltdown. So, you learn, you prepare, you try to ward off any small issue that can morph into a epic Meltdownpalooza of 2013.
You get tired of always diverting and dodging what comes your way. It’s exhausting to have Plan A, B, and C for every possible scenario that could happen just going to Target.
You listen to the professionals and the teachers. There are meetings, meetings, and more meetings. You try not to be the clueless parent, but golly, all the acronyms and therapies are confusing. You learn some new things, then you find out they don’t work and you try something else. Repeat ad nauseum.
You try to ignore the stares or the pity looks in public when a meltdown happens. You struggle to carry out your (suddenly strong) child out of a bad situation with tears sneaking out. The feeling that he is “not like the others” is paralyzing.
You wait until the kids are finally into bed after a long day so that you can unleash your feelings of anger, guilt and frustration. You want to protect him from every little thing that pops up but know you can’t.
You wonder some days what could have been. That the worst thing in your life is worrying who is going to shuttle which kid to which practice. No, you have to worry that your child is going to even have friends. Will he be made fun for not following the social cues of the other schoolkids? Will he be invited to parties or sleepovers?
Will he be able to take care of himself when he is an adult?
That’s usually when my anxiety kicks in. 🙂 So then I have to bring it back from the brink. I have to dial it back and try to breathe. To calm down because Lord knows that anxiety and panic don’t help the situation.
You remember that with the bad, comes the good. That you know you have worked hard to get a few steps ahead. And when you are always in the mouth of the beast, so to speak, you lose sight of the small things. Progress that can’t necessarily be measured on a chart, such as zippering his own jacket or buckling his seatbelt. Enjoying the pool now that he has gotten over his fear. Or how he now loves Chuck E Cheese which could have been a sensory meltdown a year ago.
Like how excited your child is about the newest fixation. How he will go on and on explaining every little quick to his obsession. He is extremely bright and can have a conversation about almost anything. I dare you to try and outtalk him. He can wear anyone down.
And for anyone who thinks that autistics cannot show love, you clearly have not met my son. He loves his little sister so much that he will literally bowl her over with his hugs. Everyone just adores the bright bundle of energy that will bust through just about any door. He yearns for the attention and love that anyone patient enough will give.
This is just a smidgen of my life in Autism Land. It’s not what defines me though. It’s just a piece of the puzzle.