Angels in Action – Shea’s Story
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.
Shea taught himself to read.
We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a word on the card. We think he learned to read by watching his Disney Sing-a-long songs videos (over and over again), with the little bouncing ball over each word as it is sung. He still enjoys watching them.
3. You are your child’s greatest advocate. It can be tiring; sometimes it feels like we’re always fighting for our kids. Remember that no one else cares as much as you do.
4. Our kids are smart. They want to learn and they want to show what they’ve learned. Give them choices. Sometimes they process a bit slower, so it takes them a little longer to follow through after a request is made. Make sure teachers and therapists are aware of this and are patient.
5. Diet makes a difference. Good nutrition along with supplements can help with sleep problems and may alleviate the severity of seizures.
6. There are moms and dads around the globe that are dealing with or have found the answer to many of the problems/concerns you are facing. Connect with them. If you can, attend a conference or get-together (and Walk-a-thon) where you have the opportunity to be meet other Angel families. We help our Angels as we help one another.
When Shea was about 8 or 9 years old, we had the opportunity to visit with the neurologist that gave us the diagnosis (and pronounced the dismal life ahead for Shea). The Doctor wanted to use Shea as an example of a neurological disorder to a group of doctors and nurses. He was quite surprised (and said as much) to see a young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand the directions he was given by his mom.
We also explained that though Shea might have some developmental delays, the doctor using the “R” word in his discussion was not appropriate and was offensive. We hope that doctor learned to never put a limit on an Angel’s abilities.