An old friend called me this weekend to check on our family. The discussion turned to the past. When Emily was a toddler, she was easily overstimulated by sounds or crowds. We were spending Easter at their home and at some point Emily “lost it”. She was crying and inconsolable. The only thing that worked was to drive her around and play a Wiggles CD in my car until she calmed down. I missed most of that evening. A few weeks later Emily got upset when I was covering dinner with aluminum foil. Todd and I realized that was the sound that had upset her on Easter.
As I was discussing the last year, I mentioned that I feel like Emily has lost 18 years of progress this year. I know this is just a thought, but I also know she is not the same woman she was a year ago. A year ago, she was out in the community daily. She would ride the bus and go out to eat. She went on overnight trips and was able to sit through a movie at the theatre. She had a social life. She has never acclimated to large, noisy crowds, but the progress was amazing.
What a difference a COVID year makes. Now just the sight of a person walking by gets her excited. Her voice gets loud and you can hear her a block away. She gets overstimulated easily. She is not easily redirected or easy to console. Her ability to tolerate wearing a mask is short and her agitation is long. She has become attached to the family. She gets upset when separated from us. Her anxiety is high and her transitional walking low. I cannot think of one area where she is doing “better” than before.
This week Emily is scheduled to go back to school for a few hours a day. She has not been to class in fourteen months. There have been meetings and calls to help prepare parents and students for the new protocols. We found out Emily’s regular teacher will not be returning this year and is out on medical leave. I had a call with the school nurse on Friday and we discussed her behaviors and ability to keep a mask on. We discussed the mask exemption form, which I completed. The nurse mentioned concerns the substitute teacher had about working with students not wearing a mask or shield. The thoughts I had around this conversation were not good. I am working on them.
The cost of the last year is high. We have all suffered loss and are grieving. The loss of loved ones, jobs, family, connection, stability, income, careers, mental wellness…and the list could continue. As I reflect on the challenges and difficulties, I know this is just the first part of the challenge. For Emily, the next part is integrating back into the world. It is learning new ways of doing things. It is adapting to the new structure. For each of us, we will have to adapt. I get it. For those with intellectual disabilities, adapting will take longer. The road will have more bumps and curves. All we can do as a family is buckle up our seatbelts and prepare for the turbulence ahead. We will land safely but for now I better stock up on Dramamine.
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