Waiting is the Hardest Part (Part 3)

Autism, it is. I proceeded to take control and devise our strategy.

We were going to get Cailyn to a pediatrician. She would have a development assessment and would be referred to a specialist for the diagnosis, which would allow us to get therapy and whip this Autism into shape. Since Cailyn wasn’t even two years old, we couldn’t be THAT far behind. We’d have it beat in a few months and be back to normal. Just in time for the baby we just learned would be on the way in May (Dalton gets his own post, later).

One of the few things as stressful as finding out your child has Autism, is to realize how helpless you are without a formal diagnosis. This can take months of waiting. We went through weeks of waiting to transfer doctors, then for an appointment. Finally, we were referred to Nationwide Childrens Hospital. In my limited experience with them, we’ve had endless trouble just getting the referral processed. I decided to get “creative” with my calls to speed her through the intake process. Finally, I was given an appointment for early March of 2011. That wasn’t going to do.

Not willing to sit around and waste time, we got involved with Ohio “Help Me Grow,” who would be able to provide some basic services. It was nice to talk to people who had been through the process but it wasn’t enough to make an impact. We needed a fast-forward button. I began the process of forming a telephonic relationship with the scheduler at Nationwide. I’d call on a weekly basis to ask about potential cancellations and to tell the receptionist about Cailyn. I wanted everyone in the department to know her name.

It was a cold and windy day in late October, when I received a call from one of my new buddies at Nationwide.
“Can Cailyn come on November 17th?” she asked.
“That will work. Keep us on the list in case there is an earlier cancellation, though.” I responded.

In the weeks leading up to Cailyn’s assessment, we did all we could with the limited resources we had. We began the process of labeling Cailyn’s favorite items around the house with homemade flash cards. A second, matching card was placed on a sticky board. The idea was that Cailyn would give us the card that corresponded to the item she wanted. Our primary goal had always been that she could communicate her needs, not that she would necessarily begin talking right away. Still, we had limited success and, in the process, Cailyn had acquired a new and very disturbing trait. She began biting herself when she was upset.

When the big day came, we were all a little under the weather. Not willing to give up our appointment, we limped along the road to Columbus with no real idea what to expect. I hoped to get a formal diagnosis immediately, so that we could get her additional services. Amber was less revealing with her thoughts about the process, so I decided to let it drop and just have a quiet trip.

So began the worst day (at the time) of our lives. Cailyn performed brutally. She had a series of different assessments, each one filled with more screaming, biting, and crying. At the end of the sessions, we were dumbfounded. We still didn’t have an accurate understanding of how bad things were.

We waited for what seemed like an eternity for the doctor to come back for the results. Cailyn was sleeping in my arms, at the time. The doctor asked what we thought was at the root of Cailyn’s problems. I immediately suggested that she had Autism, as Amber remained completely stoic. The doctor confirmed that Cailyn was on the Autism Spectrum. She then ordered a battery of additional tests and made additional referrals to get a more specific diagnosis. Amber barely spoke a word, until we walked out of the office.

“Stop.” she said, as she ran to the bathroom to throw up.


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3 thoughts on “Waiting is the Hardest Part (Part 3)

  1. Great to see you sharing your experiences! Good luck! We’re on the autism road as well – our twins were diagnosed with it a few years back. We got our diagnosis early like you did but since we started our blog, I’ve found friends who have kids in Jr high who are just now understanding their child is on the spectrum. Our blog is – itsawunderfullife.wordpress.com. Wish you well!

  2. I, thankfully, had a great experience with Nationwide Children’s in Columbus, but yes I agree that the waiting lists for any appointments can be insane. It took almost 6 months to get into the developmental pediatricians office, then thankfully only a few weeks to get speech and ot started, and another 6 months to get into the pediatric psychologist for the actual Autism testing and DX. I can say that 99% of the people I’ve come into contact with through Nationwide Children’s have been some of the most fantastic people I’ve ever had the pleasure to work with.

  3. Nate says:

    The Help Me Grow people are really great! We had Ezra tested around 2 1/2 – 3 years old because he wasn’t speaking very much. We obviously had different results from the tests. But I’m glad Ezzy’s mom called them and set up the initial meeting. It put our mind at ease. I can’t imagine how difficult things would be otherwise… But from your story, I’m starting to grasp the potential gravity.

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