The Medical Journey

23 May

I have to say, although services aren’t the best where we live, we are close to some of the leading researchers and university programs in the world.

Autism has not been a largely medical journey for us. We have not had major gut issues or secondary issues. We are extremely blessed in that way. But with the recent revisions scheduled to come out for the definition of autism in the DSM-V, we though it best to get a medical diagnosis of autism for Shelby to ensure that services she receives through Medicaid would continue. Once the diagnosis PDD-NOS becomes “unofficial” all bets are off.

I asked around about the programs at two leading universities in our area. Parent reactions were, understandably, mixed. Ultimately I chose Duke’s new autism program which is housed in their pediatric neurology unit. I chose them for several reasons but chief among them was that Duke’s approach to autism is a neurological one not a mental health one.

We brought Shelby early in the morning to the Pediatric Neurology department. When we walked in, we were greeted by a huge salt water aquarium that immediately enticed The Princess. After riding in a glass elevator, we exited into the waiting area that was decorated with painted skateboards. I’m the type of person who in a new situation or a nervous one looks for signs. Those skateboards were all the sign I needed.

The Princess was pleasantly tricked into believing she was not in a doctor’s office. When the nurse called us back there were brief tears about her temperature and blood pressure being taken. Nothing too dramatic. She stayed happy for the entire visit with the exception of a very quick physical examination where she mildly protested. We saw Dr Jeff Baker who was very respectful of my place on “the team.” He took everything I said seriously and took copious notes. He brought in a speech therapist who was very excited to hear of all the interventions The Princess had in place already.

Less than a week after our visit, I had The Princess’s written evaluation in hand. Extremely impressive considering most specialists have given me a six to eight week time frame and typically use every second of it.

I walked out with everything I had asked for going in. The Princess is now diagnosed “autism with global delays.” It is very easy for medical professionals to act holier than thou and to act like they know a child they are seeing for the first time better than the parents that  have raised them, I did not feel that way at all. In fact, I was deferred to on many things, as her parent. That was incredibly refreshing.

I have to say, I would recommend this program to anyone seeking assistance or needing a diagnosis. It was worth taking The Princess out of school for a day and a half and the cost of gas and the travel time. And that’s not just because I left with what I needed. I look forward to more opportunities to utilize Duke’s Pediatric Autism Program in the future if the need should arise.

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One Response to “The Medical Journey”

  1. LoCo_Mommy May 24, 2012 at 9:36 am #

    We go to the developmental pediatrician for B’s six month appointment – and that is one of the things on my mind. So thank you for this timely post!

    For us to go to Children’s, I do have to take a day off in order to fight traffic, go to the appointment, and then come back. B is out of his ECSE class that day as well. But it’s all worth it.

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