Wednesday, September 22, 2010 at 7:40pm EDT
Craig Holbrook updated his status.
Peace, be still.
This was the day; the moment that I knew that my life would never be the same. It was at this time that I KNEW that my daughter, Cailyn, had Autism. In an instant, I set out on a journey of ever increasing awareness for a cause which, just days earlier, didn’t even register in my consciousness. We all do it, to an extent. If our minds weren’t able to filter out the ever-present white noise of pain surrounding us, we’d all just stay in bed. That is why we have “awareness” days. It’s not to burden everyone with a cause, but to plant a seed of remembrance into your mind…so when the situation arises, you are equipped to bring a moment of peace into the life of someone in turmoil.
Sometimes, I feel like we all are guilty of glamorizing the journey. We sensationalize the miraculous woman with Autism, who has a doctorate and is wildly successful. We celebrate the news feature about the non-verbal girl, who writes novels. We watch American Idol, a national anthem, or an ESPN video of a person with Autism, root for them and shed a tear…so we’ve done our part for the day. We’re a nation of armchair advocates, living blissfully unaware of the real lives of others. The fact of the matter is that estimates now place one in every sixty-eight children on the Autism spectrum…and most of their parents will never see their child’s daily victories go “viral.”
“There is no true despair without hope.”
Many reading this blog have been privy to the wonderful things that Cailyn has done. She’s truly made progress beyond what we were told to ever expect. I feel blessed for that. I’m grateful to have been given the opportunity to guide her, love her, and protect her. What you haven’t seen, or haven’t been told, is the day-to-day fight of having a child with “moderate-to-severe” Autism. No one wants to hear the story about a five-year old child that can’t be left alone, because she’ll poop herself and smear it all over her room and eat it. No one wants to think about a child that can’t put herself back to sleep, so she wakes up in the middle of the night, every night, for months on end. It makes you uncomfortable to read about a girl hitting herself, banging her head against a wall, and scratching her face when we ask her to say her name or restrict her iPad time. We avoid going to homes of other people, because we’ll do nothing but try to keep Cailyn from hurting herself or breaking things. We can do very little as a full family, because Dalton’s presence alone often throws Cailyn into a spiral of screaming and crying. We limit trips to stores and almost never go to restaurants, because we get looks and comments from people, who don’t think Cailyn “looks Autistic”…whatever that means.
Maybe I’m too freaking sensitive. Then again, maybe you’d be on edge too, if you dealt with your child running off in public, knowing full-well that she couldn’t even call for you or tell someone her name. Maybe you’d get a little testy every time someone tried to suggest one of her challenges are similar to that of all children. Maybe you’d be paranoid if you had recurring dreams about having someone watch/teach/care for your demanding child, only to have the person you trust harm or neglect her…and she can’t even tell you. Maybe you’d hate yourself…just a little…if you felt jealous seeing another man having a good time, talking with his little girl.
I can only now bring all of this up, because many of these are ghosts of our past. We’ve found ways to cope with the challenges, Cailyn is making wonderful progress, and Amber and I act as each other’s therapists…each one strong, when the other is weak. We constantly see hope in Cailyn’s achievements and those of others in the community, for whom we sincerely rejoice. Simultaneously, we are humbled by our blessings, as we’re confronted daily with families, who have it far worse.
I know Cailyn. I love her. I see things that many of you could never see. That is why I can never go back to being an armchair advocate. I balance husband, father, employee, and many other roles, but I’ll count myself blessed to be known as Cailyn’s dad. There are millions of parents, grandparents, siblings, friends, and families of children with Autism, who feel the same way. They don’t buy a colorful light once a year and forget. They live a life where disappointment, frustration, and despair hit like the drip of a leaking faucet but the love for another overwhelms their desire to quit…so they limp to the next day.
You can make a difference in the lives of these people by:
- Knowing the signs of Autism and having difficult conversations with people you love when you suspect there may be an issue. Early intervention is the key.
- Staying informed of Autism-related legislation and taking the time to write or call in support.
- Donate your time and resources to local special needs organizations or reputable research and advocacy foundations.
- Support frustrated parents of children acting out in public, when you encounter them. Take a moment to empathize and make them feel human, instead of an annoyance.
- Sharing this information with your family and especially with your children, so that they have a foundation of treating those who are “different” with respect, love, and kindness. If there is one thing I’ve found, it’s that none of us will “defeat” Autism. With a little awareness, however, you may just be able to bring some hope to the day of an exhausted parent or frustrated child.