When she was only a few weeks old, I discovered an inguinal hernia. I didn’t even know what a hernia was, but somehow, I was able to diagnose correctly.
Later on, we saw what could be a seizure and I told her neurologist. To the trained eye, Jess was obviously neurologically impaired, so this would not have been unexpected, yet this doctor tsk-tsked me. Not until we had a full blown event did the doctor listen.
After reading an article how a person presents when valporic acid levels are high, I asked the doctor if Jess was experiencing this side effect from the Depakote? Again, the doctor dismissed me. Shortly after that encounter, we changed neurologists. The new doctor ran a three-day EEG. The first thing I was told was Jess’s valporic acid levels were extremely high. (To clarify, we had blood levels checked every three-months, but apparently no one read the results.)
When Jess was 13, I had our (new) neurologist test Jess for Angelman Syndrome. Two weeks later, we finally had a correct diagnosis. Up until this time, Jess was labeled with cerebral palsy. Because this diagnosis didn’t quite fit, I had suspected that there was something more specific going on.
Thank goodness for technology, it’s been a game changer. Not only do children have access to systems that are powerful yet easy to use (for AAC and educational games), but parents have information at their finger tips. I wish I had been able to connect with other Angelman Syndrome families. It would have answered so much. Even though no one child is the same, I might have been more prepared with what to expect. I don’t know, maybe it was best just to discover this all on our own.
These were just some of the medical mysteries that needed to be solved. I’m not a doctor, I didn’t even finish college, but because I was her Mom, I knew when something wasn’t right and I wasn’t going to stop until I was satisfied with the answer. If I expected the professionals to provide answers, I’d still be waiting.
For the longest time, I felt like we were playing beat the clock. I’ve realized that my job has been to pave the way and remove the barriers as best I can. Then wait for Jess to do things in her own time. That is something I wish I knew then that I know now, to be patient, to not worry, to enjoy the moments and not worry about the future.
We didn’t just have medical issues, but Jess had complex learning needs. Jess is severely apraxic, she’s non-verbal. I knew she understood what we were saying. I could see the recognition in her eyes. She would take my hand and place it on an object so I could help her. Once when she was with my Mom, Jess turned on the TV and the satellite dish and then navigated to the channel that she wanted. The key word here is “once”. There are dozens of firsts for Jess, but most of the time, she was not able to repeat.
This was a huge issue with school. If she could not repeat a request, then as far as they were concerned, she didn’t understand what was being asked of her. For example, Jess would sort objects 2x, but school needed her to do this 10x before they would move her to the next level. Unfortunately, Jess could not do this, it put her in a forced limbo.
When Jess experience a tiny amount of success, sometimes we were able to build on this, but when the years her seizures were at their worst, she had difficulty connecting the dots, so, we had to wait. We were fortunate to find the right people to help her bridge the gaps when she was ready. It was up to me to find the right AAC app which gave Jess a voice. It’s hard to grow when you aren’t able to share information back and forth. Up until the age of 21, we had one-way conversations.
As her ability to communicate grew, her fine motor improved which allowed her to go from a full sized iPad with a key guard, to a mini without a key guard, to using my iPhone when I wasn’t looking.
Jess found things on my phone that I didn’t know how to access. She played music and found Podcasts. A couple of times I found her listening to a podcast teaching Japanese. If it didn’t interest her, she would have closed the app and move on to something else, but this intrigued her. Like Steve Martin said “the Japanese have a different word for everything!”
There are still mysteries that I have not been able to solve. Yesterday, Jess was playing movie previews on the iPad. Suddenly, she pushed the device away and her mood drastically changed. Only one thing has ever been the cause of this response and that is the movie E.T. It only takes a few seconds watching a scene or hearing the music for her to become unhinged. For whatever reason, this movie is frightening to her. What possessed her to play the preview to E.T., I don’t know. The end result is always the same. It’s been this way for years. Every now and then, we have played the movie just to see if she still reacts. I guess that would be like dangling a spider in front of someone who was petrified of them. Confession over. We no longer tease her in this way.
Some day Jess may be able to express what bothers her so much about E.T.. She has her secrets. Obviously, this isn’t something that is going to be a serious issue. As for all the other things that were resolved, they are not things that could be left alone. The doctors “should” have been able to diagnose Jess. The school “should” have been aware of different learning styles and not expect Jess to learn like everyone else. They “should” have recognized that there was a mystery to be solved. Of course there are many professionals that are worth their weight in gold, however, this is because they are either very intuitive or because they have gobs of experience. If you aren’t comfortable with what you are being told and if the answers you are being given don’t add up, then you have to just keep searching till you get an answer.
As a famous comedian once said, “Somewhere out there is the worlds worst Doctor”. And what’s worse is that someone has an appointment with them, tomorrow!