Letter from the Editor

Summer Ends and the School Year Begins

Summer is over and the kids are going back to school.  Nathan (our Angel and youngest boy) is ready to enter kindergarten.  We had our first IEP (Individual Education Plan) meeting with the school district and a separate meeting with the school.  It has been very interesting to say the least… Now, we have experienced the heart-racing frustration that so many parents speak of.  So, I have included some helpful links that have been given to me as I prepared for the meetings. We are parents and the best advocates for our children and young adults. I wish you all the very best as you plan the upcoming school year for your kids.

Over the summer I also had the privilege of attending the Angelman Syndrome Foundations Biennial Conference and Scientific Symposium here in my own backyard of Orlando, Florida. There were so many fantastic speakers, many times I wished I had been able to sit in two conference rooms at the same time. The chosen topics were exactly what I wanted to learn about from communication, dietary therapy, LGIT, potty training and so much more.  It was great to get information on actions I can take today and start helping my son.

With all the information I received, I was quickly reminded of all that I don’t know and have not yet implemented for Nathan.  Intellectually I understand the quote “The more you learn, the less you know”, but this time I felt it and it really hit home. I experienced how difficult it can be to try and use a communication technique that I don’t understand or may not even like.  I must admit it was heartbreaking and overwhelming. I am so grateful for the many options I have been made aware of by the families that have come before me and shared their experiences with certain devices or services.

Now the journey continues as we find what Nathan likes and will be able to learn to use.  Thanks to the support of my family, I was reminded to just take one day at a time. So I would like to pass that message on to you, as we learn and share ideas let’s take it one day at a time.

Lizzie Sordia

Editor in Chief