Autism and Managing Change
Have I ever mentioned that Jess has supersonic hearing? It is ridiculous! Sometimes it seems she can hear us whispering from the opposite end of the house. She will open her door and say, “what are you talking about?” So, to try to slip something by her unnoticed is almost impossible. Even silently mouthing the words to someone will not work. She cannot see enough to see our mouths and know what we are saying, but apparently she can hear our lips moving. That is why today, when my parents came to pick Jess up to spend the night, while sitting right next to my mom, I texted her to let her know about a forgotten appointment.
‘Sometimes things change’ is a slogan we have used with Jess over the years to try to help her learn to cope with unexpected alterations in plans. Most families with autism understand what a major event it is when there are unexpected changes.
With the exception of a few chaotic years when I was in college and then when I started my nursing career, Jessica has been to annual and sometimes bi-annual visits to the Birth Defects Clinic to have her shunt checked. After last years appointment, I guess Jess got automatically booked for this year. If once upon a time I knew about it, I also forgot.
This afternoon, I got my reminder call that her appointment is tomorrow morning. Oops! I have done no pre-appointment talk and planning with Jess. Double oops!! She had overnight plans. Boo. I spent the rest of my afternoon working. I was neither strategizing nor preparing Jess, but in avoidance mode while she took a good nap and then got ready to go spend the night at her grandparents house.
There is always a delicate balance between telling something too soon and not soon enough. So many kinds of different factors play in to the picture it would be hard to mention them all. In this particular instance the main factors were:
- The appointment was not on her schedule (she keeps Siri busy scheduling appointments)
- Worry that it will interfere with plans with her Grandparents
- It will shorten her time at their house tomorrow
- It might interfere with her daily 9:00am phone call
- The appointment is doctor related
It is not just that it was not on her schedule for tomorrow. From her perspective, if this unexpected appointment pops up, then something else could pop up at any time. It introduces new ongoing uncertainty into her world. Also, it is not just that it might shorten her time with her Grandparents, but until they get here to pick her up and she is in the car and rolling, there would be a fear that she is not going to get to go at all. Finally, there is just fear; fear of the unknown of the appointment. And that fear would just multiply the more time she has to anticipate the appointment.
That last fear is an interesting one to me. Out of all of the years she has been going, these appointments have always gone just fine. She has always liked the staff and the doctors, and vice versa. However, she has almost always had anxiety about it also. Maybe, just maybe, it is a trick. For she knows that we will offer a bribe. A treat afterwards if she is good.
The secret back and forth text conversation with my mom continued after they left my house. From the backseat, Jess asked Nonnie several times whom she was texting with. A little later, when we decided the timing was right, I called and told Jess. She seemed to handle the news okay. Not happy, but not upset. She said hopefully after this year she will never have to go again. As she started tossing out a few negative comments, I reminded her that I would get her a treat if she were good. “Like what?” she said.
Hmmm… when we got off the phone, the first thing she asked her Nonnie was, “what are we going to do about breakfast?” knowing that she could probably score a fast food chicken biscuit.
A few minutes later I got a phone call back. Never fear, Jess has everyone’s best interest at heart. She has decided that she is going to tell them they don’t need to touch her because she has germs. Isn’t that so thoughtful of her?! I assured her everything is going to be fine, and reminded her to have a good attitude and be good.
Jess – “What treat did you say you were going to get me?”
Me – “What did I say?”
Jess – “An oreo blast.”