As wonderfully fulfilling as parenting might be, the truth is that sometimes it's just plain hard. And if you have a child with special needs, that truth can be even harder.
From the moment we bring that perfect baby into the world, we’re watching her every breath, counting her fingers and toes, waiting for her every squirm and wiggle, anticipating first steps and first words and first-firsts.
No one is more finely attuned to that baby than we are.
No one knows her better or loves her more.
And no one is more acutely aware if something isn’t quite right.
Oh, we hope we’re wrong. We hope we’re being paranoid. We hope against hope that we’re worrying too much over nothing. When our perfect baby girl is content to lay in her crib for hours, watching her stuffed animals, it’s because she’s just a good baby, and we’re incredibly lucky. When she doesn’t roll over until she’s a year old or walk until she’s 18 months old, it’s because she’s just developing slower than her sisters did. When she doesn’t babble or practice her sounds like other babies her age, but then her first word is ‘chocolate’ at age 13 months, she’s just precocious...and on it goes.
In truth, the comparisons are endless. Developmentally, she begins to catch up to her peers, but we can’t help but notice that she doesn’t quite fit in with them. Others begin to notice her ‘differentness’. In a preschool playgroup, she refuses to participate in group activities, preferring to play on her own. In kindergarten, she has trouble following instructions. In grade one, you begin getting calls from the teacher about small infractions, and you find yourself having to systematically explain to your child even the simplest of rules. In grade two, she begins to fall behind, and you can no longer brush aside the comparisons you’ve tried to ignore: she’s diagnosed with a learning disability at age nine; Asperger’s at age 14; high-functioning autism at age 18.
But while the comparisons made by the outside world continue, you resist. Not just because you want to shield her from them, but because, instinctively, you know they will serve no purpose. She is who she is. She isn’t a case study in a book. She isn’t your friend’s daughter. She isn’t one of her sisters. She’s her, and while it may have taken her longer than ‘normal’ to make it this far, she has made it, and that's all that matters.
Slowly, you learn to look back rather than forward. Where she should be according to the experts or in comparison to her peers becomes how far has she come? You look back five years to when you were spelling out loud almost every single word to her when she wanted to write something...and now you see her correcting her friends’ spelling and grammar online. You look back four years, to when you had to build an extra hour into departure times—even for something she wanted to do—because the slightest hint of pressure to get out the door meant a total meltdown...and now you see her getting herself up and showered and dressed and out the door to catch the bus on time. You look back three years, to when a meltdown meant hours or days of recovery time...and now you see her come out of her room after just a few minutes, able to communicate to you what set her off in the first place. You look back two years, to when she was unable to read a bus schedule or coordinate a meeting with a friend without your help...and now you see her after six months of living five hours away from home, getting lost on the subway but managing to rescue herself.
Life, however, is filled with setbacks. And when you look at her now, as she sits wrapped in anxiety, trying so hard to rebuild her confidence and find her place in the world while your friends’ children are off exploring the globe and going to university and moving out on their own...your panic sets in and your heart hurts and yes, you do catch your breath a little.
But then you remember to look back. To see how far she’s come. To see how far you’ve come. You remember that this is a dance. That there is no choreography. That sometimes one step forward and two steps back or to the side is just fine. It's just her.
You remember to repeat the mantra you created for yourself in the midst of the years of uncertainty: a generally forward direction. It makes you smile, because you know it to be true...not just for your daughter, but for life in general. Experience has taught you that.
And, for a little while, you remember to breathe again.