May is almost over and I promised myself that I wanted to squeeze in this anniversary post about our visit to the Angelman Syndrome Clinic at Chapel Hill. The clinic is part of the University of North Carolina Chapel Hill – Carolina Institute for Developmental Disabilities. We were there in May of 2013 and I have yet to put anything in writing about our awesome experience.
At the time of our visit, only one place existed in this country as a complete facility to address the needs of those with Angelman’s Syndrome. In the fall of 2012 a second Angelman’s clinic was opened in Boston. It took us nearly a year to get an appointment to the clinic, but the wait was well worth it. The doctors were knowledgeable and engaged. It was so nice not having to explain Angelman’s Syndrome to the doctors and therapists. And it was even better meeting with a team of experts who knew a lot about what we were experiencing. Oh, how I wish every visit to a health care provider could be like this.
There are a few things to be aware of before embarking on a visit—first, there is a waiting list; second it is necessary to take care of pre-authorization with your insurance provider; and third, the appointment is an all-day endeavor. Even with those caveats, the visit was well worth it. The day included testing and then visits with each of the following specialists: Genetics, Neurology, Psychiatry, Psychology, Physical Therapy and Speech Therapy. It was really good stuff.
When we left, we received a complete record of Juliana’s evaluations along with recommendations that we could incorporate into her daily and school routine. I set up meetings with Juliana’s teacher and therapists and a lot of those recommendations are still in place today. While the clinic is not yet set up for follow-up visits, we gained a lot of valuable information and I now have this available at my fingertips for future reference.
If you are a parent of an Angel, I highly recommend considering a visit to the clinic. For other special needs parents of rare disorders, it’s worth it to see if such a facility or service exists. A few years ago, I had not heard of the Angelman Syndrome clinic. We were very fortunate that one of Juliana’s therapists was a part-time staff member. She assumed I knew about the clinic, so she mentioned it briefly one day. I’m so glad she planted that quick seed. I hope this post will serve as that catalyst for someone else.
Oh, and there is one last thing that I have to mention about the trip. My girls are both officially winged. This was a first flight for both Jessa and Juliana. They did better than I imagined (a post for another time) so it was icing on the cake for our trip to Chapel Hill.