Worries and More Worries

August 13, 2017

I thought I would rest for a couple of days while my husband and my daughter traveled with Robert to New York City.  But I became anxious yesterday evening when I learned that after 5 hours long trip, my family still decided to drive for hour and a half  to Staten Island to meet with relatives in the restaurant. I suspected,  it would be too much for Robert.  Long trip along interstate 95, stop at the Tapas restaurant Robert, unlike his father,  really doesn’t like, coming to grandma apartment and then drive to Staten Island and meeting with people he didn’t expect, that is a lot for him.

I became very worried this morning when I called New York and heard loud screaming noises clearly indicating that Robert was mad.  He was mad because Amanda didn’t want to finish her food. The reason he wanted her to finish was that he believed that if she did then they would all go home.  He was mad because in other room of the apartment was his cousin instead of his grandmother. He was mad because it was already noon and they were still in the apartment instead of somewhere else.  Possibly,  on the way home.  From his perspective everything was not as it was supposed to be. He was mad because nobody discussed anything with him and prepared him for the sequence of events.  He was mad, because nobody understood the message in his frustration despite the fact that it was expressed with the loudest possible sounds and the most dramatic pitch.

I was far away.  I couldn’t help.  I only worried about what that all meant.

Robert cannot handle too many changes to his routine.  He never acquired tools to help him deal with that.  I should have taught him more about rules and how they need to be adjusted to the changing environment. But this is something I couldn’t do without help of others.

Robert still doesn’t have tools to communicate his wishes with appropriate signals. And nobody expects him to communicate with words, so nobody takes seriously his preferences.

The people around him, even the closest ones,  don’t understand him and don’t even try to adjust their decisions to what Robert wants.

I realized that Robert wouldn’t  have really anybody he could rely on to give him some clear directions,  when I am not there. Nothing I have done has been working for Robert to make his life easier, smoother, more pleasant in the future or even now, when I am not around.

Moreover, as I deal with so many new, difficult behaviors, I also notice dwindling number of people able to treat him like a human being, empathize with him, and lead him.

I am getting older and weaker.  I don’t have much time to address those new behaviors and arm Robert in tools enabling him to regulate his behaviors to fit changing circumstances.

So I have to start now.