What is a Down Syndrome Clinic?
If you are newer to the world of Down Syndrome there is so much information to digest from recommended screenings, to alternate growth charts, early intervention and soooo many therapies. You may not even be aware of the availability of clinics to assess and help you navigate all the areas that your child is progressing in as well as areas that you may need to offer your child additional support. This is where a Down Syndrome clinic comes in and can be an invaluable tool to make sure that your child’s doctors and therapists are not missing anything. So, what is a Down Syndrome clinic?
A Down Syndrome Clinic is a cooperative collaboration of many different specialties all available to see your child in a team approach. These clinics typically offer a developmental pediatrician as well as physical therapists, occupational therapists, speech therapists and several other clinicians. The goal is to evaluate the child and see if any further supports can be put into place as well as to connect the family with local resources to aid in the progression and growth of the child who has Down Syndrome.
I had heard of these clinics but we had our first experience when Cedar was about 18 months old. I believe the recommendation is that when possible, a child is seen at a Down Syndrome clinic annually. We were advised for our appointment to allow for 2-3 hours and none of that was downtime. We were greeted by a team of specialists that included a dietician, speech therapist, occupational therapist, and physical therapist. We were taken to a room that looked more like a play area than a hospital exam room and Cedar was given toys, bools and other objects while the professionals in the room interacted with him in a playful manner. I observed that they were making notes as they observed him, but to Cedar, he just gained a roomful of new friends.
The NDSS has compiled an amazing map of Down Syndrome clinics in the United States so you can see just how close you may be to one of these fantastic resources.
We had been asked to bring some of the foods he regularly eats, and after playtime the therapists watched him have a snack and observed his feeding processes. The team exited and convened to discuss any recommendations they had for us prior to sending us on to the see the developmental pediatrician. Recommendations included some local resources for feeding therapy and orthotics as well as literature for other things we could work on.
I was prepared to not gain any new information as I feel we already have an amazing pediatrician who stays on top of all the latest recommendations for Cedar so I almost just went as a formality because we were “supposed” to. However, I did gain insights and I learned about some amazing new resources as well as learned some more about what will likely help Cedar progress in some of the areas we were still struggling with.
I can see this being so valuable to other families, especially if you use a pediatrician who is not overly well versed in Down Syndrome. We learned of an amazing resource called the United Healthcare Children’s Fund. Many families struggle with the out of pocket expense of private therapies when they feel that additional therapy beyond what is provided free of charge by their state is needed. This resource is amazing and is not for people specifically who have United Healthcare Insurance but is for families with private insurance and often high out of pocket deductibles. What it does is provides funding for therapies, durable medical equipment, and surgeries to help families when there are gaps in their insurance coverage.
After the appointment was over we were given some great advice and left feeling as though all aspects of Cedar’s development were well assessed and we had a clear plan of what we needed to do over the next year to support him in reaching his goals. We then received a detailed printout from each of the specialists a few days later and can use that as a benchmark for his development moving forward.
Our experience was with the Cincinnati, Ohio Children’s Hospital, have you been to a Down Syndrome clinic and if so, what was your experience?