Why I Was Secretly Pleased When My Daughter With Angelman Syndrome Called 911
The first time the police came to our door, it was just about dinner time.
“Ma’am, is everything OK?”
“Yes, officer, why do you ask?”
“Someone dialed 911 from your address.”
At that moment, I realized I had left the cordless house phone on the picnic table in the backyard. My daughter Jessie had been playing with her dog while I was inside making dinner. The backyard was fenced and I could keep an eye on them from the kitchen window; however, I didn’t think anything of the phone being outside.
According to Jessie’s communication book that goes back and forth from school, the lesson that day had been “what to do in an emergency.”
The officers were pleasant but not amused as I shared my guess as to how this happened. Then I asked if they would please explain to my then-5-year-old daughter that she should only dial 911 if there is a real emergency. At least what was a false alarm had now turned into a teachable moment.
As serious as this was, secretly I was pleased because my daughter had applied what she learned at school. She was always the kid at the bottom of her class. The teachers didn’t know what to do with her because she didn’t talk, didn’t follow along with the lesson plan, nor would she repeat a drill 10 times to prove she understood the concept. It didn’t help that she was very distractible which made it even more difficult for the teachers to determine what Jessie was learning, if anything. For Jessie to tap 911 on the phone just validated what I had believed all along: she comprehends much more than anyone realized.
At this point in time, Jess had a diagnosis of cerebral palsy. It wasn’t until years later when she turned 13 did we learn her correct diagnosis was Angelman syndrome, a rare genetic neurological disorder. This explained a lot: her ataxic gait, happy demeanor, late milestones, non-verbal and seizure disorder. Most of what I read was not very encouraging; however, there were two bits of information that I clung to: “Angels” comprehend much more than they can verbalize, and they can outgrow their seizures. Jessie had a spark in her eye that made me believe the first was true and before she turned 20, we had weaned off all seizure medication.
We have many theories about why Jessie was so distractible. At first we thought it was the seizures, but it wasn’t until she turned 21 and we found the AAC (augmentative and alternative communication) iPad app called Speak for Yourself that we truly understood what her issues were. Because her eye/hand coordination was so poor, she never learned to isolate a finger. So it was assumed that an AAC device was beyond her grasp. What was not taken into consideration was, what was her motivation?
After she tapped her first words on the iPad, over a period of six to nine months, she was able to recalibrate her eye and her accuracy improved to the point where she no longer needed a keyguard. Not only did she have access to the vocabulary that she was learning (this system works because it relies on motor planning and the words stay in one place, and you can find any word in two taps instead of going through layers) but she also could open the 5,000 pre-programmed words. It was these fringe words that motivated her. The first word she discovered was “exceptional.” Her “talker” also gave her immediate verbal feedback and this allowed her to self-correct. She was no longer frustrated when attempting new things because she found success. We also learned that when she was in a new environment, she needed to scan the whole room first and memorize where things were. This reduced anxiety and allowed her to focus. Most people look at one thing at a time but her brain doesn’t work that way.
For Jess, what looks like distractibility is really how she takes information in. In all her years at school, no one thought she would know what “exceptional” meant, much less use it appropriately. Quickly we realized that she had a very good vocabulary. Though I didn’t read to her as much as I would have liked (because she couldn’t sit still), I did talk to her about anything and everything that was appropriate to her age.
Before Jessie found her AAC voice, we could only guess as to what she was thinking. Now, she’s able to be more specific. It’s important to realize that it’s difficult for anyone using an AAC device to keep up with a typical conversation which is between 100-130 words per minute. This is why Jess has learned to tap the words that best sum up the conversation, to show that she had been listening. For example, a few weeks ago over dinner, I was lamenting about my job and was thinking about quitting. Jessie’s response was, “Don’t let the door hit you on the way out.” She doesn’t have many pre-programmed phrases on her Talker, but we try to add some that give her conversation color. Later that same evening, her father was admiring the carpentry work he had just completed in the kitchen. Jessie said, “Remarkable.” She prefers to be succinct when she wants to get a word in edgewise. When we are driving in the car, the sky’s the limit. Conversations that are slower allow her to say whatever is on her mind.
Jessie is now 27 and still likes to pick up my phone when I’m not looking. If she’s quick, she will get to it before it locks, and then scroll through photos, find a movie on Netflix, or even use FaceTime. I’ve learned not to underestimate her abilities or slyness. For years she had me question “does she or doesn’t she,” and now, the more she talks, the more I realize that she was listening all along. She just had no way to tell me.