Just because my daughter has Angelman Syndrome does not mean I refer to her as an angel. It is a popular term used in the AS community, but not one I’m keen on. For those that don’t know, Dr. Harry Angelman identified children with similar symptoms thus the reference. I guess it could be worse, instead of angels AS was referred to as dancing puppets. AS children tend to be sweet-natured people, but this does not make them angels. As time goes on, I believe that underneath Jess’s AS diagnosis, there is a typical person. Someone who has a full array of emotions and someone who is clever. Jess can be strong-willed, restless and very sneaky too. I guess for some people, angel is a term of endearment, but long ago, I realized this did not fit her. Maybe this is because we didn’t get the AS diagnosis till she was 13. Hindsight makes me believe that not knowing was to our advantage, to not be defined by a list of traits. Just like when we read a horoscope, it uncannily resembles our day. The same goes for generalities associated with AS. There is truth here, but it is a matter of how much we accept this truth and how far along we are willing to go.
Take fascination with water. I don’t know many children that aren’t drawn to water. When I was little, my Mom told me not to go into the lake until she returned. Even though I’d been given explicit instructions, it didn’t stop me from putting my toes in the water. Soon I was up to my calves. By the time the water was at my waist, my Mom dashed out of the cottage, yanked me out of the water and swatted my behind. The point is, even typical children find water inviting.
Yes, Jess loved the water from her first toe-dip. In fact, it was hard to get her out of a pool. Since Jess puts a great deal of effort into walking, I wonder if she loves water because how it makes her feel, unencumbered? As she’s gotten older, she is more discerning. Only warm, in-ground pools will do. She can just look at water and assess the temperature. As much as she loves to swim, it isn’t the draw it once was.
Another issue AS children can have is not being able to sleep through the night. Since “we didn’t know any better”, we made a point of redirecting Jess back to bed and she was expected to stay there. This is when we learned how strong-willed she was. When Jess was five, we had just tucked her into bed. The husband and I had settled in our room with popcorn and a movie. The next thing we knew, a tiny, little hand poked through the crack of the door and waved the empty popcorn bag. Awe…how cute! How adorable! Why don’t you just come up on the bed Little Bird, share some popcorn, watch the movie and we will snuggle! Sounds like a wonderful moment doesn’t it? Unfortunately, for the next week, we paid the price. Jess tried to manipulate us trying everything she could to not stay in her room. She’d show me a picture, hand me a video and then when that failed, a book. One evening, it took me 21 times to put her back in bed before I won the game of wills. There is no reasoning with a wee one when it comes to staying in bed. All we had in our arsenal was to be consistent. Again, this is a real issue where an AS person cannot sleep and does not want to stay in bed. This can get pretty extreme. In Jess’s case, she is a master at wearing a parent down. Our success came from not giving in, but that was not an option.
Another time, I was having a restless night and like Goldilocks, went to a bedroom on the second floor to try a new bed. At some point, I heard a sound downstairs. Jess was up. I did not want to move because I was finally near elusive slumber. The next thing I knew, our Piper dog came upstairs and nudged me. I told him “I will be right there”. Still, I did not move. The next thing I heard was a sharp bark that rustled me out of a warm bed. I found Jess in the middle of the stairs with Piper sitting in front of her so she could not fall. He was concerned and didn’t know why I hadn’t gotten up sooner. Even though he was off duty, he was always on Jess patrol.
There were times over the years where Jess was more restless than others and was relentless. I know my limits. It’s five. If I wake up for the 6th time, I turn into a hideous, screaming troll. This is when the husband takes over. Jess is the kind of person that insists on her way and seeks out the chink in our armor. The nighttime routine is the one area where we held our ground. If we showed any weakness, she would systematically vie for control. This does not sound like an angel.
Sneaky is another word that describes Jess. Over the years, she has used her disability as her ace. Playing this card, everyone helped the poor little disabled girl. Jess definitely has her challenges, yet she takes advantage of any sucker than she can manipulate. The worst part about this is that she needed to work on her skills. She is the one that ultimately suffered. Hell, we all suffered because we never got a break. Shame on us for being taken advantage of by a little girl. Well played Jessie, well played. No, you are no angel.
We learned how clever Jess was while in Kindergarten. Jess, Piper and I were playing in the back yard. When the phone rang, I sat down and talked while those two played. He’d have a ball, she wanted it. Jess would throw another toy, he’d drop the ball and she’d pick it up. Since she didn’t have a sibling, this seemed like a natural way to play. As dinner time approached, I put the phone down and went inside. Jess followed me and brought the phone. The next thing I know, the police were at our door. They said “someone dialed 9-1-1”. Well, it wasn’t me and I turned to Jess. The next day, school had told me that they discussed what to do in an emergency. Not only did she listen, but she tested the theory. All I can say is the police officer didn’t think she was an angel either.