‘And That’s All I Have to Say About That!’

After writing this column for a year, quoting Forrest Gump sums up my state of mind: “And that’s all I have to say about that.”

I’ve come to a point where I don’t have much to share. Words do flow better when I’m annoyed, but my purpose has never been to complain about my family’s lot in life. Thank goodness emotionally charged struggles aren’t as common as they once had been, but the result is writer’s block.

We are now on a different plateau and everyday life is blissfully boring. Seizures are part of her history, negative behaviors are no longer a form of communication but rather fleeting moments of frustration, and AAC communication is a work in progress.

While most kids fight for their independence and demand to do things themselves, Jess chose the opposite path. Because she was aware and old enough to see the benefit, she fought to be dependent and treated as special. She preferred being served over performing everyday, common tasks. Even though we requested simple things, she didn’t want to struggle, especially when she could get to me to fix things in a jiffy.

Sometimes you don’t realize how far you’ve come until you stop and look back. I know Jessie’s skills have improved because I’m not stressed. When she was younger, I looked forward to her dad stepping in when he returned from work. I hate to admit it, but I preferred Mondays when she’d go back to school. Now, I anxiously await her return!

These days, Jess either keeps me company or entertains herself. She helps with the chores and her self-care abilities have greatly improved. Some days Jess requires more verbal prompting, but on many other days she takes initiative. I no longer lock our pantry cabinet and I don’t have to worry that she will help herself to ice cream that is kept in the garage freezer.

Even though Jessie is 20-something, I insist that she ask first before fixing herself something to eat. Of course, I don’t mind if she gets baby carrots to snack on, but I do object when she doesn’t use portion control and the bowl is overfilling with more than she can possibly eat. Sometimes I find her in another room snacking, to which I respond, “If you have to sneak, then you know the answer would be no!” Just as a chained dog will run away because it is suddenly free, we’ve had to give Jess her freedom to build trust. (This comparison is a mindset, I’m not comparing her to a dog.)

Unfortunately, for longer than I care to admit, I controlled every aspect of Jessie’s life. For several years, we have been in the process of relaxing the reins and giving her more freedom. Sometimes this means three steps forward and two steps back, but there is still a small gain made. Though it can be painfully slow, looking back, we can see her progress. Those hard-earned gains need to be recognized and celebrated.

Four and a half years ago, when I started writing my blog, we had been living in crisis mode. Jessie needed help in every aspect of her life and we didn’t know where to begin. We didn’t realize we had been enabling her. We had to be “retrained” in order to support her in a way that developed her independence. There was so much to write about then …

Jess is in control of this very large spider. (Photo by Mary Kay)

This morning, as she was getting ready for her day, I told her she needed her socks, which were in her room at the other end of the house. She came back with a remote-controlled spider. I guess she got distracted along the way. It happens. We laughed about her choice and then she went and got her socks so she could finish getting herself dressed. (On Halloween, she often would get a spider ring. She’d carry the spider carefully to show someone, but if they yelled “EW,” she would toss it as if it were going to bite.) For some reason, her dad gave her this large spider for Christmas. It helps her fine motor skills to work the controls, but at the sight of this, several family members’ skin would crawl.

Not long ago, Jess would get so distracted that she couldn’t perform simple requests. She’d be distracted by anything and everything, and it didn’t even have to be shiny! Oh well, I don’t consider this story about her spider as “must read” material but at the same time, I can appreciate how far she has come. That’s all I have to say about that!

P.S. No one can predict a child’s capabilities. Jess had a 10-year plateau and any expectations we had were extinguished by school and her doctors. It wasn’t until we went rogue and made our own path that we saw noticeable gains. When a person is not understood and has failed repeatedly, it’s easy to lose confidence. All I know is that you won’t get anywhere unless you try and try again. Maybe it will be fruitful, maybe not, but you won’t know if you don’t try.

To read more about our journey, visit my blog. We wouldn’t even have a story if Jess hadn’t found her AAC voice. Also, check Angelman Syndrome News on Fridays for my upcoming columns.

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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.