Tag Archives: children with Autism

A Road Paved with Never


“Based on these test results, Cailyn is extremely delayed…based strictly on what we’ve observed, I can’t say that I would expect her to communicate verbally; certainly not in sentences.”

We quickly learned that the depths and complexities of Cailyn’s capabilities couldn’t be so easily summarized by anyone. Just months after hearing that Cailyn wouldn’t speak to us, her first repeated word (“bubbles”) was triggered as an incentive to play with bubbles. Her second, third, fourth, fifth, etc. all followed within minutes. She could suddenly say ANYTHING and it was as simple as a switch “on.”

This was no anomaly, but the beginning of an emerging pattern: Cailyn was only a single connection away from an exponential jump in progress. One day, while playing with a Christmas gift, we captured another amazing moment on camera as Cailyn spontaneously used a sentence. As she began to place a car sideways to go down a ramp, she realized it wasn’t going to work. She turned it around, made sure she could see the headlights and said “Car goes like this.”

The search was on. If incentives and toys could flip the light on, we were going to try anything and everything to jumpstart another achievement. Unfortunately, Cailyn wasn’t exactly able to communicate the things she loved. We began a painfully long and expensive cycle of trial and error, where we would buy anything if she showed interest. We’d give families gift ideas for birthdays and Christmas, only to get the same response.

“All done.” Cailyn would say, pushing away the item.

While she has made progress using the word “yes,” Cailyn doesn’t understand the abstract concept of “no.” Negatives are actually quite complex. The word “not” makes an entire statement into the opposite. We learned that Cailyn wouldn’t respond when we asked her not to do things, so we had to give her positive reenforcement to perform another task, instead. So, as opposed to asking her not to hit herself, we’d instruct her to put “hands down.” Cailyn can’t even tell us when there is a problem, she only knows solutions. Instead of telling us when she doesn’t feel good, she asks for “medicine.”

Over time, we’ve slowly happened into items and incentives that have led to miraculous gains. Equine therapy sparked her ability to follow multiple-step instructions and resulted in tear-free fine motor gains. Cailyn’s therapists had worked with her fruitlessly on tracing, when we discovered she responded to an iPad tracing game using stars as points. When her teachers used stars, she excelled. Now, we’re using numbered points and she’s connecting the dots. Her love for suckers have even led to her beginning to spontaneously and independently use the restroom.

Progress is rarely overnight. To get Cailyn to ask for things she wants, we started by letting her pick a picture on a set of cards. We moved on to labeling these items in the house, so she’d take us to them. Then we took off the labels. When she learned to repeat words, the labels became vocal. Then we began making her use the name of the item, even when she couldn’t see it. Now, we make her use sentences, ask her to be polite, and are pushing adjectives. It’s a beautiful thing to hear the toilet flush, see Cailyn run in without pants, and then hear her speak…

“Mommy, I want sucker, please. Pink. Yes.”

Cailyn should not talk; She’d never use sentences. She can not go to Kindergarten and could not keep up in a typical class. Cailyn is not fit for a job, can not meet a boy, and will not live independently. These are the things we read, see, and are told every day…even by our subconscious, in dreams. In a moment of vulnerability, I might admit to having believed every one of them.

Cailyn’s journey is littered with impossibilities, riding a road paved with “never.” She’s surpassed each of these expectations; relegating unrealistic milestones to her rear-view. Step-by-step, and sometimes in leaps, Cailyn is defying every one of us and becoming the girl I was afraid we’d never see. She doesn’t know your limitations…

…because Cailyn has never been good with negatives.
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Autism Awareness


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:

  1. 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.
  2. Staying informed of Autism-related legislation and taking the time to write or call in support.
  3. Donate your time and resources to local special needs organizations or reputable research and advocacy foundations.
  4. 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.
  5. 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.

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