Monthly Archives: April 2014

Burn the Fleet

I’m anxiously pacing down the hallway with Cailyn’s hand firmly grasping mine. Sometimes she’s excited, prancing beside me and giggling uncontrollably. She may also be upset and need comfort, begging me to hold her in my arms and pat her back. Cailyn’s mood, however, is as fragile as it is pronounced…and her mood for the rest of the day may be dictated by the next few moments. It’s a regular trip that I anticipate and often dread…the moment when I discover who will be watching my daughter.

Sometimes, we’re blessed with individuals who have a passion for Autism and Cailyn. These people (you know who you are) have impacted our lives and brought us joy, that we can never fully express. Other times (especially in new places) we’re met with confusion as we try to summarize the complexities of Cailyn’s particular spin on Autism, into a 2 minute conversation…all while a dozen other children are racing around playing in the background.

“Ok…are you planning on any loud sessions? If so, she’s going to freak out and need to be away from the others.”

(Blank stare)

“Here is a brief summary of words that you may not understand from her, but may be the difference in her being manageable or screaming and hitting herself the entire time…Snacks are in her backpack with the diapers. Did we mention she isn’t potty trained?”

(Eyes widen)

“Here are some signs that she may be starting to melt down…If any of these begin, she might ask you to hold her. She uses closeness and touch to calm herself down. Are you by yourself, today?”

(Mouth now beginning to hang open)

“Please come get us if there are problems.”

It’s a “no win” situation. Cailyn naturally has a more difficult time with the unfamiliar. Unfamiliar kids, unfamiliar teacher, unfamiliar classroom, unfamiliar time…all can trigger extreme anxiety in her mind, which manifests itself in behavior that an unfamiliar teacher doesn’t often know how to manage in a five year old. It isn’t fair to any party in the transaction and the results are often very similar. I’ll walk back to the class and Cailyn will be in the corner all alone, while the other kids are engaged in activity with the teacher. She’ll already have her coat on (who knows for how long) and her diaper will be soaked almost through. She runs to me, wants to be held, and can only say a few words…

“Car Seat. Please. Bye Bye.”

We can’t maintain a lot of friendships. Most people grow tired of the overhead that comes with family time. We don’t do ANYTHING on a whim because the benefit of joy in any last-minute activity will be negated by the price we pay for a lack of preparation and forethought. Most houses aren’t Cailyn-proof, so going to other people’s homes can be a tedious exercise of head-swivel and saying “No. Don’t touch.” It’s just not worth it. Such is the life of a family with a young, special needs child. We’re separated from the norms of everyone else.

So, the next time we’re a little too quick to correct our children, it’s not that we’re “high strung.” When we don’t make an effort to get together, it’s not because we think we’re better than anyone else. If we get overwhelmed by the thought of last second plans and opt-out, it isn’t that we’re aloof or “no fun.” When we don’t go to events, whether private, charity, or church…it’s not a flippant decision to be separate. It’s a calculated sacrifice to hold onto the last beacon of sanity in our lives. What everyone else sees is nothing more than a fleeting glimpse into every moment of our new lives.

While you may be encouraged by gathering with others and singing a song, remember that I just dropped off a person I love (much, much more than myself) into the hands of people who don’t understand her; Into a place where she may be sad, scared, neglected, unwanted, and confused. Then, with that knowledge, I’m asked to stand, sing, and praise the God that permits it to be. Fellowship and community can be a supplement, but just as easily a barrier to faith.

I’m not targeting anyone, but speaking about our general state of mind and the existence of some families battling Autism. Over three years ago, our lives set out on an entirely different path. We’re no longer citizens of your land. We’ve embarked on a lifelong journey, the perils of which have no basis for explanation in your tongue. We wake under a different sky, fall asleep to a more ominous moon, and each moment in between somehow feels different because Autism can reach up and pull the rug out from any moment of serenity. In spite of this, we press forward because the love for our daughter overwhelmed our desire for normalcy. We set our sails ablaze…and here we will remain.



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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