Being a parent means dong what you think is best for the
child during all phases of their journey into adulthood.
Being a parent of a special needs person means hoping that
you are doing what’s best for your child even when they are an adult.
When Scott and I began our journey into Asperger’s Syndrome
we were told by countless doctors and therapists and friends that we should try
to make her act and be as much as society’s definition of normal is. So we started working with her and drilling
it into her head to be normal:
Don’t flap your hands Courtney – normal people don’t do
that.
She now cracks her knuckles so bad that I am positive she is
going to have arthritis by the time she is 30.
Don’t dress in jeans and t-shirts Courtney – normal girls
wear dresses, boots, sweaters – girlie things.
She now will not wear a dress if you paid her cold hard
cash.
Learn to drive Courtney – all the people your age have their
licenses.
She has tried. She is
scared. She cannot do it.
And so it has been for all of her life. Do this.
Don’t do that.
And we wonder why the child is so frustrated, has low self-esteem
and can’t move forward in life.
We were just trying to follow doctor’s orders.
Today, I read a blog from a mom of a boy with Asperger’s
Syndrome, who is an adult now. She wrote
that while he was growing up they let him be different. If for his birthday, he wanted to tour the
Microsoft office, they found a way to make it happen – even if all the other
kids his age were having birthday parties at skateboard parks.
That blog made me mad.
Not at the mom who wrote it.
At myself.
Why didn’t I do that?
Why didn’t I just let her be who she is?
Would she be more confident today?
Would her self-esteem be so high that nothing could hold her back?
I was really good at fighting for her. At making sure she was treated fairly. At telling her that just because you have
Asperger’s Syndrome doesn’t mean you can’t do anything you want to do.
I guess I just wasn’t good at letting her be her.
And I know that she is going to accomplish great things,
just at a slower pace. And I know that I
did the best I could with the resources we had.
And I know that hind sight is 20/20.
But today…
Today I Am Mad
Melissa, you are a great mom. All parenting is groping around in the dark, I think, and there's even less light when you're parenting a special needs child. I met you the day before Courtney started school and I was so taken with how open you were about your fears and anxieties, but also with the energy and determination you were putting into making sure that every avenue was open to her. And you sustained that energy and that determination through more obstacles -- emotional, institutional, social -- than I'm sure you ever dreamed you'd have to face.
ReplyDeleteBeing best friends with an elementary school teacher for decades has afforded me countless opportunities to see parents who either would not or could not push back against the system to make sure their special needs kids were getting what they needed. Not academically, not medically, not socially, not practically. Never once, in all the time that I've known you, have you ever stopped fighting on Courtney's behalf, in all arenas. You are the rarity, the exception, the unicorn.
I didn't really start becoming an adult until I was in my late 20s because it took me that long to figure out who the heck I was. I had to figure out my own path spiritually, not walk the path other people in my family had walked or planned for me. I had to choose a career based on what sustained my soul, not a career that would make other people smile and nod and applaud my maturity and level-headedness. I had to come to acknowledge and embrace the fact that I'm gay, despite how at-odds that puts me with so many of the people I grew up and love so deeply. I really only started living -- like really *living* in the last seven or eight years.
Some people figure out their deal with they're like six years old. Some people figure it out when they're in their 80s. I figured mine out when I was about 27. That's when I finally felt free to be who I was.
Courtney's only just beginning. She has so much life and so much love and so many experiences before her. She'll figure out how to be who she is in her own time, and she will know in the deepest places of her heart that you are going to embrace her truth, whatever that is.
All parents fuck up their kids; it's just the facts of life. Winning as a parent is about staying in the ring no matter how bloody the fight gets and letting your kid no that no matter what happens, your love is for real and forever. That's you, Melissa. That's exactly who you are.
It's OK to be mad, of course. I think it's actually really important in life to let yourself be mad. But the world is hard enough on us. Don't beat on yourself; you're a light in the darkness and you burn so hard and so bright.
Thank you Heather. You are someone I admire immensely. For you to write this msde me cry! Thank you
ReplyDelete