These last few weeks have been difficult. Jess has been grinding her teeth. Like nails on a chalkboard, this sound makes me cringe. As it became increasingly constant, it felt like Chinese water torture. When she started grinding her teeth at the dinner table, I couldn’t take it anymore, she pushed me over the edge and I asked her to leave. [Read more…] about There IS a reason for everything
Angelman Syndome
Dentist drama
Today, Jess had a six-month dental checkup. This time she was given a new doctor.
With my full support, the team wrapped her in Velcro bands. This has a calming effect, as well as, prevents her from flailing her arms, a knee jerk reaction, but with arms…
The dentist then placed a mouth prop in to prevent her from biting down. As he was inspecting each tooth, he started singing the ABC’s. Jess started to object and tried to move her head. He then began singing “the Wheels on the Bus”.*
Before he could finish the first verse, I said:
“Excuse me, but that song is not appropriate, Jess is a young adult”.
him: “uhhh….. what should I sing? what music does she like?”
me: “well, what music do you listen to?”
him: pause….. “oh”.
* I was so annoyed at that moment, I can’t remember the whole conversation verbatim, but this was the gist.
From there, I (nicely) went off telling him that you can’t define a person solely on their outward appearance and you should not assume what someone comprehends based on their diagnosis. Labels tend to share information with a broad stroke. To his credit, he had read about Angelman Syndrome before her appointment, but most likely he read the Wikipedia version. **
As I was “educating” the young doctor, I caught Jess’s eye and she proceeded to calm down. I hate talking about her in front of her, but this was one of those moments I couldn’t take it and he struck a nerve.
This was awkward. Jess couldn’t speak for herself, (remember she was wrapped in Velcro and did not have access to her Talker) so I had to be her voice. It’s not unusual to not be able to answer the dentist’s questions. Why do they always ask questions that require more than a yes or no when they are in your mouth?
Unfortunately, Jess has a cavity that needs attention so we will be returning next week. While scheduling the appointment, I made it with another doctor who Jess had seen before. I’m confident that the dentist she saw today would have given her proper care, but I think he needs to sit this one out.
….
The day before Jess asked to go to the ice cream shop. She does this often. I informed her that now she’s a young adult, it’s important for her to watch her figure and that she can’t have ice cream unless she works out. Jess responded by calling me opinionated. After today’s drama, she is probably happy that I am.
**It should also be noted that this primarily a pediatric dental office. Most of the patients are little ones, but they also support the special needs community. I would not hesitate to recommend them to another family.
The Angel life…
We are in the middle of summer. It’s hot and thick. The only escape is a friend’s pool and a tall glass of iced tea. Oh yeah, and a Golden who wants to play.
Summer has been uneventful and this is a good thing.
For Jess to use her talker, it isn’t as novel as it once was. I don’t share everything she says because it is no longer new. She chats with me all the time, tells me what is on her mind, and shares her opinion.
Over the weekend, we had a family reunion. I wasn’t all that surprised when Jess chose not to use her talker. I’m not sure if it was the pressure of having 30 people here, or if she just didn’t want to talk to people that aren’t familiar with someone using an AAC voice. It would have been great for her to expose others, but I don’t blame her for wanting to take a day off. In hindsight, it would have been better if I shared with the family (we don’t see very often) how to have a successful conversation with someone who uses a speech device.
Thank goodness we were outside and under the trees. It was the only place to find a breeze. When I finally sat down for dinner, I was amused when Jess got up and took her plate to another table. She’s a social butterfly.
It was nice to observe her in her element. This is how she operates;
If you smile, she smiles.
He who talks less hears more.
When I think I’m raising her awareness, she raises mine.
This is the Angel life…
I don’t know how you do it…
The phrase many special needs parents get annoyed hearing is “I don’t know how you do it”. We take this as a personal affront. When said, I felt as if they are looking at my child as less. However, deep down, I know that if the situation were reversed, the onlooker would take care of those that need support. I don’t care if it is a child, partner, parent, pet, or a fortunate friend, but when someone needs help, there’s no hesitation. When you see someone fall within arms reach, instinctively you try to catch them.
To be truthful, there have been times where I didn’t jump up immediately but took time to muster the energy because I was so worn out. Of course, in an urgent situation, I make a mad dash. Unfortunately, more times than I care to remember, “just when I’m out, they pull me back in”.
Parents do things for their children that they probably wouldn’t do for anyone else. For example, when Jess was eleven, we had taken her to a routine EEG at her neurologist’s office. From there, we decided to go out to dinner rather than deal with commuter traffic. We enjoyed a wonderful Italian meal. Jess ordered baked Ziti which was her favorite. At the time we had no idea this would turn into a memorable evening and that all hell was about to break loose.
As we headed for home, we stopped to walk around the Home Depot Expo so we could work off dinner. Just as we neared a $700 toilet, suddenly Jess was not acting right, she turned pale and I could see that she was about to throw up. She was wearing an oversized t-shirt which I pulled out to catch “dinner”. Of course, we were at the opposite end of the store from the bathroom. We ran down the aisle parting it like the Red Sea. People gawked in horror as I effortlessly caught buckets of upchuck in her shirt. Once in the bathroom, after the third wave of nausea, I realized we would have to make a break for home. While my husband drove, I sat in the backseat with my sick little puppy. I had removed her shirt and put my windbreaker over her (thank goodness it was a rainy day) and held the bag making catches like an all-star outfielder. Seriously, I doubt this is something I would do for someone other than my child. Sorry husband, I don’t think I’d do this for you either.
After a month of sleep disturbance, last night was the second in a row where Jess slept through the night. Now I’m going to say “I don’t know how you do it” to the Angelman parents whose kids have long periods where their kids aren’t sleeping. Even though we did experience sleepless nights In the early years, I thought all-nighters were behind me. I’m too old for this. I don’t have the moves like I once did and definitely, don’t have the endurance or stamina. This is why we should have children when we are young.
For you nighttime warrior parents, I say this with the utmost respect. Please realize that this is a badge of honor and you are being recognized for the great job you are doing. It is not meant to be patronizing.
Finally, the biggest mystery is how Jess can go weeks without much sleep and not be worse for wear the next day while I look like 10 miles of bad road?
Jessie, I don’t know how you do it!
When a boy calls…
He’s been trying for some time to reach her. Private messaging had not been successful, so he had to find another way.
Cody didn’t have her number, but he found mine on his Mom’s iPad. When I answered the phone, I knew it wasn’t meant for me. Jess did not play it cool, but giggled with glee. Exciting to have a boy call her for the first time!
They have been corresponding by mail. I don’t recall when it started, but it began by his sending her a holiday card with photos and little gifts. She replied in kind.
For the most part, their communication has been supported by the Moms. Two years ago, we met at a dinner for Angelman parents at a Closing the Gap conference. I never dreamed that Jess would make a new friend in the process. We don’t know many Angelman families so this is rather special for us.
Cody’s Mom* thinks his calling is random, but I beg to differ. If this happened once, or maybe twice, I could be a happy coincidence. Just like Jess, if he sees an unlocked device, he will use it. He has PM’d us nearly half a dozen times and this is the third time he has used Facetime. His efforts are purposeful.
When Cody and Jess said good-bye, I realized she didn’t know how to use this feature. I then added four people to her address book; myself, her father, Cody and her therapist. Don’t we all need a therapist? lol… actually, she wears two hats because she is a friend and they have a lot to talk about.
I tried to show Jess how to access Facetime, but she didn’t want my help. She preferred to figure it out herself. The first FT call was to her Dad. The day is getting close where I will fade out of her social life. She will not need me and that is how it should be.
*Claire, you made the photo. Next time they speak, we will get another pic of the two of them 🙂 Thank you for being a willing partner fostering communication! Cody has been a wonderful pen-pal. Someday they shall meet!
I wish someone had told me…
I wish someone had told me to throw out the book “What to Expect the First Year”. When Jess was nine-months, she wasn’t meeting her milestones. Realizing that this book was not written for us was disturbing. Milestones are important to recognize, however, not all children walk and talk at the same time. If they are Angels, then there is no specific timeline. Jess may have waited 10-20 years to accomplish some things, but as far as I’m concerned, it doesn’t matter when you cross the finish line.