Kristi Campbell, author of yesterday's popular 10 Things Autism Parents Wish You Knew post, is a semi-lapsed career woman with about 18 years of marketing experience in a variety of national and global technology companies. While she does work part-time, her passion is writing and drawing stupid-looking pictures for her blog Finding Ninee, focused on finding humor and support for her special needs son.
The first time that the word autism came up in an official capacity, at an Early Intervention evaluation, the only thing that kept me from falling to my knees was the fact that my 2 ½ year old son Tucker was watching me.
I didn’t want him to see that the word autism hurt.
While I wasn’t exactly surprised that an expert brought up the term that had been swimming in my stomach for months, I was busily telling myself that Tucker’s behavior was at its worst during that evaluation. While I, too, had noticed that he refused to imitate the act of building of a train using blocks, that he’d hidden under a chair when asked to interact, and spent a good 15 minutes staring at a spot on a window blind, I comforted myself with the reassurance that, at home, he was much more “normal.” I told myself that his behavior during his intervention was due to a new environment, new scary people, and highly uninteresting games.
Months later, when teachers from the Preschool Autism Classroom (PAC) came for an in-home visit to discuss special education placement, I maintained that Tucker likely “only had a speech and language delay.” They kindly explained that while that may be the case, they thought that he’d still benefit from ABA therapy, and recommended a 26 ½ hour/week preschool program.
I agreed, even though it meant that gone were my pregnancy dreams of the little boy who would attend a co-op Montessori school with me three mornings a week, keeping with the advice from a trusted mom that “the number of school hours per day is equal to a child’s age.”
Gone were a lot of dreams. I still grieve for the little boy I thought I’d have. Sometimes, I even catch a glimpse of him.
But. The boy I do have?
He’s amazing, and my favorite person in the world.
I can tell you this. The let-go-of dreams made room for new ones. Ones just as beautiful, magical, and important.
I am grateful beyond all of the thankfuls to be raising this little boy that I’m raising. I’m in awe of the fact that one day, he’ll be a man and that my actions today mean something. And today, on World Autism Awareness day, and on all of the days, your actions mean something, too.
Every child deserves empathy, understanding, and acceptance.
I promise that there are enough magical moments, and enough love, to make you thankful, every single day, for the chance to know this special person in your life. Will there also be moments of pain, tears, frustration and a desire to hide in the bathroom with a box of wine and copious amounts of toilet paper shoved in your ears? Yes. There will be. But the moments… the moments, mamas and papas…I’m telling you. The moments are worth it.
Today, let’s focus on the hope and on the magic. Let’s focus on helping mamas and papas who hear the word autism for the first time know that it’s okay. That while life will be different from the expected, it will be full. It will be more than enough.
The following is what I wish I knew and why I’m asking you to spread autism awareness, and light it up blue in April.
8 things about autism that I wish I knew before:
- There will be a night, likely too late in the evening, when you’re lying in bed with your son, annoyed that he’s not asleep yet. There will be a moment when your son nuzzles into you, looks at you, or touches your cheek, and you’ll know. You’ll know that you’re parenting exactly the little person you were meant to. That nobody else would do but you.
- Milestones are still met. It doesn’t matter when, really. Every achievement is worth celebrating, and celebrating big. With cake, even.
- Your child with autism is the same child that you knew before you heard the word autism.
- Words and labels don’t define. Everybody is here on purpose.
- Early intervention matters. It works. We all need help. Early intervention is just a different type of help than you may have expected having to ask for. Ask for it. There are amazing people out there who will love and guide your child. Who will love and guide you, too.
- One day, you may stumble upon your son singing. Alone. While your own childhood may dictate that this act is sad or lonely does not mean that his does.
- Every single person on the planet is unique. Autism is just but one tiny piece of a mold with an infinite number of pieces. Just one.
- This kid – right here and right now – has the power to change the world. As do all of them. As do all of us.
Give my kid, and all kids, the chance to change the world.