Mary Ellen Hyers-Huegel

2018 Autism Beach Bash

Support Me

Our story begins when my husband and saw our sweet baby James at Monmouth Medical Center in Long Branch, NJ on July 22, 1997. It brought me to tears as the nurse handed me this beautiful little boy. I looked into his eyes and knew we belonged together. I rocked him for a little while trying to take it all in, this baby seemed so natural like we were fated to be together. As the years went by we noticed some quirks in his behavior and everyone seemed to think these were of no concern. We knew better but didn't know what they meant. It took years of asking questions and persistent research to finally realize our little boy had Autism. Autism was not a well known word back then and awareness was just at its beginning stages. We were lost we had no idea what to do or where to go. No one we knew had ever had experience in this field. Today we know that his lining up of toys, watching Barney forward and in reverse all day everyday, his obsession with everything Pokemon, his uncomfortable reaction to sitting on grass, not liking the sand on his legs, inability to cross midline when drawing, only coloring with a single color, not making eye contact, and flapping his hands all meant and mean something. Our sweet sweet baby had Autism. I guess we were greatful  to have a name  for it but terrified too. We were in uncharted territory. James was 6 before we got his diagnosis. He had no former education, no services, no therapy. What will we do now?  Will we ever be able to bring our boy to where he needed to be, Why didn't anyone help us, why didn't anyone listen to us? There were so many questions and no answers we were literally on our own. Muddling through we got him in school and got a formal diagnosis. James was "high functioning" I want to laugh every time I hear that phrase. He could walk and talk and met all his milestones on time. Almost felt dismissive like hey it could be worse. Not to minimize the children who are non verbal and can not walk by any means I pray for them always. But because of his "high function" he was unremarkable, unnoticed and had no problems, must be something wrong with those parents. I'm sure many have faced the issue of knowing when something is wrong with your child and Drs have not been able to see or test for it so you were sent home knowing in your heart they are wrong. Today James is 19 and just graduated high school. He is one of the most sincere, friendly and loving people  you will ever meet. He may not ever drive a car, make change of a dollar, or have concept of time. He may have fears of balloons, fire, and open stairwells. But he will always be my best friend, make me smile when I'm down, be my personal secretary, remind me of things we have to do (relentlessly reminding, lol) and surprise me everyday of new things he learns. He is everything I could ask for in a son and that's why he has always been "my sunshine" and our sweet sweet baby James. Because of James and our experiences with him it made it much easier to identify 3 other family members also on the spectrum. He was meant to be here and obviously was part of a bigger plan. After all these years we have found support from groups called  "NJ Austism Warriors" and "POAC'" these organizations supply outreach, support, resources and education. Family is important and enclusion is key. They run so many events to make sure families participate together so no one person feels left out or more important then the next. We as a family have benefited greatly and have enjoyed so many of these events. Because of these free events we have been able to network, share  our experiences and receive support of other families who live our lives. We want to give back to these organizations who give so much to many so today James is starting his  first fund raising, his goal is set very low because We wanted to guarantee his success, however, please feel free to donate as much as you would like its for an awesome organization. Thank you for your support. The Huegel's

 

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