Bad choices make good stories

Sometimes I can’t see the forest for the trees. When I watch Jess too closely, I often miss the big picture. I hate it when other people do this and I abhor it when I catch myself falling into this same trap.

A couple of weeks ago, Jess had a day where she did not utter a word on her iPad. I gave her grief about her not making an effort. As it turns out, she wasn’t feeling well. Of course, no one wants to talk when they feel poorly. What annoys me most is that I didn’t allow her this option and I jumped to conclusions. I let fear take a front seat, allowing it to drive my emotions.

That’s the thing about hindsight, it’s 20/20. Can’t tell you how many times I’ve assumed too much and needed to apologize to Jess. More often than not, I say,  “Mommy was wrong”. How frustrating it must be for her to be misunderstood. How fortunate I am that she always forgives me. Thank goodness she doesn’t hold a grudge.

Maybe I need to add the phrase “oh Mother” or my favorite “oh the humanity” so she can express the feeling of injustice? (I will ask her, maybe she will want to say both).

Sometimes, Jess uses non-verbal ways when frustrated. Over the summer, as we were finishing breakfast, she reached over and made a grab for a plate of bacon. As she was lunging across the table for the food (Angelman parent’s, I know you know what I mean), our host caught her by the wrist. Before I could say anything, he turned to me and sternly said,  “don’t say a word”.  

The first thing that swirled through my brain was disappointment. We didn’t make it through our visit without a scene. I never excuse bad behavior, however, I did try to make light of it and was shut down. In hindsight, no one asked Jess if she wanted seconds (this is where I failed). Unfortunately, it was painfully obvious that there was no tolerance at the table. 

This was a humiliating experience. I felt bullied because I know that the host would not have spoken to my husband this way. I felt bad for Jess because she acted out of frustration. After we left, I reminded Jess that she could have asked and then told her that we were all partly to blame. Regardless, this was not handled well. There is no excuse for bad manners/ bad behavior. 

Last night we had more non-verbal drama. Dinner was a two-course meal. We started with chili and then would have Chef salad. Jess saw the salad and objected to the chili. She smacked the table and left the room. So much for family unity.

Within minutes, Jess returned and asked for salad on her Talker and all was well again.  When she cleaned her plate, she asked for more salad. I’m not happy with how she expressed herself in the beginning, however, she pulled it together and we were all able to enjoy our meal.

At dinner’s end, she said, “afterwards anybody want ice cream…eat remarkable ice cream…sprinkles”?  We’ve been on a strict Whole30 diet for the last few weeks, so there has been no dessert. However, I was not going to refuse her after she made such a nice request.

There wasn’t any ice cream in our freezer, one cone at our local drive-in costs as much as a half-gallon at the market, so we went to Shop-rite. 

Not only did I buy ice cream (which was on sale) but I picked up a bottle of sprinkles because Jess had been specific. When I was in line, I changed my mind, returned the sprinkles and purchased M&M’s instead.

Back at home, I told Jess I didn’t get sprinkles. I bought M&M’s. Asked her if she was okay with this. The answer was an enthusiastic yes! Then I added the word “substituted” in her Talker.

This is a typical day in our life.  This is part of our Angelman journey. We are far from perfect, but we are trying to do the best we can. 

Honestly, I don’t know who is the grasshopper and who is the master. 

Learning never ends.

especially when you learn from them.

 

One thought on “Bad choices make good stories

Leave a Reply

Your email address will not be published. Required fields are marked *