Phelan-McDermid Syndrome Teaches Family to Live in the Present

March 5, 2013

Author: Amy O’Donnell

Most of us take for granted the importance of basic simple communication. Families with children who have  Phelan-McDermid Syndrome (PMS) or any other communication disorder have one of the most difficult challenges to deal with every day: not being able to communicate or understand their child. With a cry, we wonder if they are in pain, or scared, or hungry?

We need patience, knowledge, love, understanding and a quest to learn everything we can about our children. Even if it means asking the same question one hundred times until we understand the answer. This can mean studying about genetics, or the function of the brain or attending a conference to meet doctors, scientists and families who understand you.

Raise awareness and educate yourself

We live each day as a book, only able to get through one page at a time. We can’t go back and erase the pages written, and we can’t skip ahead to a more desirable part of the story. We have to take it day by day and appreciate every moment as a gift–

And we have been given this wonderful gift of Jacob.

When he was diagnosed we all worried– he would have so much he needed to learn– but as it turns out, he became the teacher. Jacob has taught us so many things: patience, humor, acceptance, unconditional love and endurance.

We plan ahead and try not to look behind, and all along the way, when we find people that we can talk to, relate to or just become friends with, we try. Every day is an opportunity to educate someone new about Phelan-McDermid Syndrome.

We try to help others who have questions and may not know who to ask. We encourage people to get questions answered by any means available. If you are not satisfied with the answers you are given, you should ask another and another until you are satisfied knowing you have done your best to get help for your child.

Ready to learn more about PMS? Check out The Phelan-McDermid Foundation here.

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