Angels in Action
Shea teaches himself to read! By Carol Pulver of Florida Angel Mom to Shea 22 years old, AS Del +
Shea( pronounced Shay), our youngest, weighed a whopping 6 ½ lbs at birth. The largest of our 4 sons; his delivery followed an unremarkable pregnancy and he was born close to my due date. Shea’ s Apgar scores( the tests done shortly after birth) were all normal / high. He had all his fingers and toes and everything was wonderful. Problems began in the next couple of days when Shea had difficulty nursing. He continued to have problems feeding and was back in the hospital at 6 weeks with“ failure to thrive”( the catch all phrase). While in the hospital, a visit from a speech therapist alerted us to the low muscle tone in Shea’ s cheeks and his tongue thrust causing the inability for him to sustain a suck for more than a few seconds. At home, as we worked to make sure Shea received the nourishment he needed, we began to notice some sensory issues. Moderately loud noises were very upsetting to him, he seemed to startle easily and he wasn’ t meeting the milestones we were expecting in his development. The pediatrician told me I was worrying needlessly, that Shea was just a little behind in his development. Seeking a second opinion from another pediatrician, I was told to immediately schedule a neurology consultation, get an EEG and do blood work to check for abnormalities. Up until this point, though my mother’ s intuition was telling me something was not right, I still trusted our family pediatrician to know more than I did. I was wrong. I learned to listen to that intuition; to act on it. Through the visit with the neurologist and the blood work, we received some answers.
I remember the day we got our diagnosis of Angelman Syndrome( Shea is deletion +). Shea was about 2 years old. The neurologist gave us copies of articles from an early‘ 80s medical textbook, describing Angelman Syndrome. He told us that our son would never be able to walk, to talk or to function as our other children and that we might as well“ find a place for him”. The doctor painted a very bleak picture of the future. After leaving the office, my husband and I sat together in our car( as we cried) wondering what to tell our families; feeling quite hopeless. We knew Shea’ s“ place” would be with us, as long as we can take care of him. We decided that we would do everything in our power, provide every opportunity, for Shea to be all he can be. Our journey has not been trial free, but the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear.
I want to share some of the things we’ ve learned along this journey: 1. Always trust your intuition. No one knows your Angel( s) as well as you do. 2. Never put a limit on your Angel’ s abilities.
23
WWW. ANGELMANTODAY. COM JULY / AUGUST 2013 | Angelman Today