January 30, 2017
Finally, a chance to breathe.
I know. It snuck up on you, didn’t it? It came to call after you’d gone through the eight million Early Intervention appointments and put his program into place, or through the six thousand evaluations that led to services at a school you hope is more than just “appropriate” for your daughter. You know about the “A” in FAPE because while not doing therapy, laundry, or taking your child to yet one more evaluation you’ve scanned the internet horizon like an eager addict, hoping for that next great hit that might somehow help your kid.
The diagnosis was difficult but at the same time energizing- the differences in your son have a name, and now you can do something, which cut through that insipid dread that’s been following you around like a remorseful ex. She’s on the “autism diet”, you’re giving her supplements, you’ve explored safe alternative treatments and made a plan to try a few. Her therapists and teachers are in place, you’ve even found a sitter you like so you can get the hell out once in a while. You’ve dotted your “I”s and crossed your “T”s, and today you find yourself for the first time in a very long time with a couple of hours to yourself. And it hits you, how you’ve put wanting to know your child’s future on a shelf so you can function. You know that ironically all your efforts haven’t been the hardest part- that’s still to come.
Now, it’s time to wait.
You may or may not be like me, a planner extraordinaire, which served me well as a former educator and even better as an autism mom. I admit I struggle sometimes to remain in the present, am always thinking a few steps ahead. You’re realizing you can’t really look that far down the road because he’s changing every day, making progress, sometimes taking two steps back. It’s too early to know if your eighteen-month-old son or four-year-old daughter will ever drive, fall in love, live safely and independently apart from you.
But still, you want to know.
Some people will tell you what you want to hear. They will compare your beautiful two-year-old boy to their second cousin’s boyfriend’s neighbor’s son who was non-verbal and is now at MIT. They will tell you about their other clients who present just like your daughter who are now fully mainstreamed, talking, and have friends. They may not be so positive, as in the case of my eldest son’s former therapist who laughed when I suggested he’d one day read. At the time, he was two years old.
He was reading complete sentences by four. And yup, still severely autistic.
There is no crystal ball you can look into for these answers, although you’d bargain your life for one. There will probably not be a single, defining moment like that one at the doctor’s office with the annoying florescent light bulb that will change your life, where you will know what the future holds for your child. You won’t know for years if your child will ever speak because sometimes it just happens as a teenager, along with all those changes typical kids go through too. If your child is in a self-contained class in kindergarten you won’t know if he’ll keep that placement forever, or one day shed his IEP. You won’t know if he’ll ever eat a vegetable.
Fortunately, some things aren’t as difficult to wait for as others.
You won’t know the answers to the big questions now, but I promise you someday you will. It may come gradually over time as it did for me with my oldest, realizing after years of intense therapy that despite his inherent intelligence he’d always need care. It might come in a watershed moment like with my youngest son, where his beloved pre-school teacher suggested he’d benefit from a partial day mainstreaming in kindergarten without an aide, citing the astounding progress he’d made in two years at such a young age.
And for the record, my sons are two of the happiest kids I have ever met.
No, for now you have to wait, and it’s hard, so hard. Waiting will lurk in the corner with you like that person you should really unfriend on Facebook, relentless in its tenacity. If you let it it will consume you, rob you of the gift of the present, insinuate itself into every corner and crevice of your life until the waiting, the not knowing, is all-encompassing.
Don’t let it. Don’t let the waiting, the worry, the anxiety envelope you if you can help it. Revel in what he’s accomplished, hell revel in what you’ve accomplished for him. Relegate the future to a back shelf, somewhere cluttered enough that you can’t spot it easily, and take everything day by day. So much will change over these next few years- struggles will be conquered, new challenges will present themselves. A goal you never thought she’d attain will eventually be met. Others you thought were so important will go by the wayside, and it will be okay.
You have the power, with how you choose to perceive things, to view this life as okay.
Know you never have to wait to share in this vibrant, caring community.
You are not alone.
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