September 29, 2014
A Better Place
A few weeks ago I had the honor of speaking at the kickoff for the Autism Speaks Philadelphia walk, and I thought I’d share my words from that evening with all of you. It was a great night and I met many amazing families. Thanks and enjoy!
Good evening, my name is Kimberlee McCafferty and I’m so honored Autism Speaks invited me to talk to you tonight. As a teacher I’m used to speaking to classrooms of ten-year-olds, so if I seem a bit nervous, please bear with me.
My husband Jeff and I are parents to two beautiful boys, both of whom have autism. Our youngest, Zachary, is seven and has informed me he’d like to be president one day, so please vote for him around 2048. Our oldest, Justin, is eleven and has just started speaking his first words, and forgive me for bragging, but his is one of the most affectionate souls to ever grace this earth, plus he gives the best hugs ever. Jeff and I consider ourselves the luckiest parents on the planet.
Our autism odyssey officially began in Washington DC ten years ago when Justin was diagnosed at seventeen months, but I feel it truly began when he was half a year old and started spinning everything he could get his hands upon. We were initially told his language delays just mirrored those of his father and frankly every male relative he has on both sides of his family tree, but in my soul I knew there was more.
I knew he was different. Different, but never less.
Eventually my concerns were realized when our pediatrician informed me my child had a neurological disorder by thrusting several miscopied articles with “autism” in the title into my shaking hands, then ushered me out of the room with a grim “good luck” and a hastily scrawled phone number for a developmental pediatrician.
I went home, put my son in his exersaucer, called my husband and mother, and cried. Over the next few months I shelved my grief for the “typical life” I thought we’d lead and began to embrace the one we have today.
To say this was both the most difficult and most important choice of my life would be the understatement of the last century.
Even though I’d been a teacher for a dozen years I knew very little about autism, so I did what most parents do in our situation. I went on the internet.
The internet, and chat groups, told me a lot of things about autism. At the time, the concensus among many parents, professionals, and autism organizations was that if my son didn’t speak by age seven he never would. They told me my second son’s regressive autism would likely end up more severe than my first son’s type. The web told me my youngest might never regain the light in his eyes that seemed permanently extinguished following two back-to-back illnesses which seemed to claim his soul at twenty months. I was told I was only a good mother if I searched exhaustively for a cure. I was told I was only a good mother if I completely accepted my child for who he was and didn’t try to change a thing. The internet spoke of isolation, of the loss of friends. It regaled me with stories of tantrums and insomnia.
Okay, over the past decade we have battled with those last two.
Finally, stubborn woman that I am, I decided I no longer wanted to be told anything, that instead I wanted to learn.
And since ABA was not provided under Virginia’s Early Intervention program in 2004 I got trained to deliver thirty hours a week of therapy to my son for eighteen months.
By the way, I do not recommend being your child’s primary therapist if you want him to like you or you wish to retain any last vestiges of your sanity.
But far more than the dance of reward and demand of ABA, I learned how to reframe my life.
I learned, perhaps most importantly, to take care of myself and to thank God for Grandma’s babysitting stints which kept my marriage alive (hi honey!).
I learned the web was right about losing some friends; I also learned to shamelessly replace them by making friends with all of my sons’ therapists.
I learned to revel in the timbre of Justin’s “EEE” resounding throughout his school when he sees me on days I pick him up early.
I learned to overcome my kitchen phobia to make gluten-free chicken nuggets from scratch (and hated every minute of it).
I learned Zach’s bravery has no bounds, for when his dad and I told him he and a lot of very famous and bright people had autism he simply jumped up and down and was so proud to be autistic.
Then he asked for more Cheetos.
I learned that autistic people not feeling empathy is, well, crap, as evidenced by Zach wanting to save every bug no matter how small that lands in our pool.
I learned that not only were the professionals wrong about Justin not talking, but that my eldest, severely autistic son would be reading aloud his first words to me at eleven (and he’s so proud of himself).
I learned that my beautiful, brilliant often messy children shatter my expectations of them daily.
I learned never to give up trying to give them the best lives, of their own unique design, possible.
I learned, and this one was a big one for me, how to ask for help. Autism Speaks has personally played a huge role in assisting my family. They’ve helped get legislation passed in our state for autism services so Jeff and I wouldn’t go broke, and I’ve often turned to their wonderful tool kits in moments of semi or full desperation.
My two favorite ways they’ve assisted us are how we found a developmental pediatrician through the Autism Speaks/Autism Treatment Network at CHOP who could finally help us with medications, and my personal favorite, the nurse who made house calls in the study we enrolled in through the ATN to help quell Zach’s insomnia.
Did I mention that last one was my favorite?
My husband, and by extension my boys, are so grateful Autism Speaks exists. In an effort to give back tonight I’ll be donating 100% of the money raised from sales of my memoir, Raising Autism, a book about the boys and our life together. Even if you don’t want to buy the book, please stop by and say hi. We have bookmarks and they’re free.
Finally, our family, initially forged in fire, has come to a place of acceptance, and gratitude. We truly love our lives. I want to thank you for your time tonight, and wish all of you and yours happiness and peace, and a successful walk on November 2nd.
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