I keep disappearing, realizing summer was not the time to launch a blog. Action Jackson pulls me one way, Dyl Pickle another … and so on … and there’s so little of me left to go around. I am NOT giving up on my dream! Way too many signs from the universe, way too much love and way too much to share to walk away now.
Summer has been rough for Jackson. He thrives on the very established routine of the school day, and seems to sink when that very established routine disappears. “Well, then, keep it up,” the uninitiated might say, but for those of us living with Autism we know it’s not that simple. Turning your life into one big very established routine is my personal idea of hell. As it stands there’s far more rut to my life than I’d like because that’s what it feels like to ME. To Jackson, those routines and patterns make life make sense; they are the thread holding it all together for him. Of course, we try to stick to routines as much as we can because, truly, it helps keep the peace, but I can’t help but wonder if this morning’s change of schedule was the catalyst for meltdown after meltdown today.
The change stands to benefit Dylan and I after school begins — shifting therapy appointments to the early morning time slots to free up our days for more fun (and blogging!) while Jackson is in school. “How mean!” No, how practical. Dylan can have his therapies without constant interruption, and can relish in the activities he enjoys such as music and books (activities his older brother can often live without). Because, yes, two kiddos with special needs takes some juggling. Hell, having one takes juggling; having two takes SKILL. I don’t even know about three. Wizardry? Witchcraft?
It’s not the kids though sucking it out of you. At first, maybe you think it will be. Surely having a child with a disability will just be nothing but work. But caring for your child isn’t really work after all; it’s called parenting. Although breaks are appreciated! But the paperwork, the barrage of doctors’ appointments, the revolving door that replaces your front door, the waiting, the rearranging, the not knowing… those are the bits chipping away at you — or who you used to be — every day.
I feel like I woke up one morning in someone else’s life — someone else’s skin. Who’s this ragged woman with dark circles, baggy clothes and missing teeth (that’s another story)? Why does she do the same thing over and over each day? Why is she always at the flipping doctor’s office? Then it hit me in one of those shining slap-yourself-on-the-head moments.
SHE IS ME.
I am her. We are the Walrus. Having children with special needs isn’t a death sentence, and neither is the life that goes with it. I’m tired of the negativity! I want to celebrate and be happy and love every minute round this rock. And, with that, I’ve been slowly waking up. Realizing I don’t have to sacrifice everything I once loved (writing, art, puppetry, etc.). It simply looks different now like that woman in the mirror.
I’ve always stood by the statement that I simply cannot relate to parents who say they grieve a child they lost when they have an awesome kiddo right in front of them. I’m NOT invalidating parents who feel that way. I never felt that way away my children, but WOW have I felt that way about myself. Amazing things happen when you give yourself permission to change the rules. No, I’m not the mom I thought I was going to be. Turns out maybe soccer isn’t our thing, but we can rock a trampoline like nobody’s business. Perhaps I’m not the calmest mom I could always be, but my kiddos now enjoy a very large vocabulary. Yes, we often eat breakfast, lunch and dinner coated in chocolate, but it’s organic and fair trade.
At the end of the day what matters most is that you and your child are present. The devil is in the details. And so tonight I celebrate by going to my first ever Mom’s Night Out. Thankfully, they’re moms of children with special needs, too, so no one will even look at me funny when I start snoring.