Therapies

As a teacher by profession, I always knew early intervention such as exposing kids to lots of books, exploring, talking, touching stuff... all the things typical kids take to naturally was very important. I can say it has now taken on a whole new level of importance. I love our therapists and even though I am a fairly experienced mom with 3 older kids and a special education teacher by training, I depend on them for so much.

Let's start with physical therapy. Our PT is the BEST out there. She is amazing at what she does and she loves Ayden Jane. Honestly, we have become very good friends as we have kids in the same schools.... AJ started PT late compared to most, at about 5-6 months. When she started in PT she could do next to nothing. I remember the early days where we were just trying to get her to reach for a toy. Each week Jen (our PT) would come and work with AJ and we were amazed. It was if she knew where all these secret buttons were on AJ to make her do new tricks. She would give us homework which was great for Ayden Jane and also gave me a mission. It was wonderful to have something to do that actually showed some results. Jen helped to guide us through all the skills AJ needed gain and she was always so positive. We didn't worry about where we were compared to typical kids, just made sure we were moving forward as quickly as possible while laying constant foundations for the next skill.

Most kids also have occupational therapy. In our case, our PT kept an eye on the OT and worked on that as well. I told you Jen is amazing.

Speech therapy is started very young for most kids with Prader-Willi Syndrome. In the begining it is more about feeding skills and mouth stimulation than speech. Ayden Jane saw speech therapists in the children's hospital at MUSC which gave us exercises... and we came home feeding by bottle. We did not start private speech until Ayden Jane was 15 months. At that time her evaluation showed a significant delay in expressive language. She was on target for receptive language. Exciting to say that 10 months later, she has caught up to within normal limits for expressive language as well. Although, I must add that her articulation is quite poor.

Therapeutic horseback riding. Yep. Ayden Jane rides horses. She started at 18 months and rides once a week. It is great and I believe has really helped with her core strength. Besides, she LOVES it.

There are other options out there for therapy including accupunture, sensory integration and others. I will talk about sensory integration in another post, as it has been our biggest mystery.

Janet