Posted by Liz Albuquerque, Bengaluru
During this unique time, when most of us find ourselves confined within the walls of our home, following routines that are not our normal everyday; I was asked to write a piece on how Ally is coping during the Lockdown.
Alyx loves a schedule, a structure in her day, and predictability. If she has these three, she is good to go. All through her life, we have used her love for routine to build skills, competence for her tasks in daily life, and growing her interests into what is now her vocation and workspace skills.
In the first few days of the Lockdown, everything in her life and ours changed. We had to reschedule and rework all areas of her day and ours. This included, working online, exercise, household chores, leisure time activities and learning new skills. With all the changes, the first week wasn’t easy for any of us, and the fact that we were all home, all the time, was another adjustment to make. By week two, things got more organised and there were fewer emotional flare ups all around. Alyx had a new routine and structure to her day and things were predictable once again.
The other aspect of the Lockdown that has hit hard and is a worry for us, and I suppose for all families with youngsters in the ASD space, for professionals who work with them, and the individuals themselves, is “social distancing “. For most of Alyx’s life, a big part of her learning and our concern as parents has been “socialisation” – inclusion in peer groups, participation in community spaces, and just being counted. None of this comes naturally to Alyx and has to be taught and facilitated. Simple things like eye contact, a hug, being able to go for a movie with friends or cousins, family gatherings, working in an inclusive environment, have all been hard for Alyx and she works at it constantly. She is now able, in her own way, to do all of the above and seems to enjoy it.
This last month has been a confusing time for all of us, and for Ally all the more. “Why am I not allowed to meet my friends, go to work, pat a neighbour’s dog, hug someone I like, see someone I want to, …”, are questions she asks all the time. Answers to these questions are at best nebulous to most of us, and are completely unsatisfying to her, and just get her asking more.
Under the Lockdown, each of us has coped differently. The narrative of Ally’s life, which she had been building in her own way, has suddenly changed and she has had to learn to make the adjustments. Alyx, more than us, lives in the moment and that probably is a better way to live life, more so at a time like this.
Someone mentioned that “The reality of this present moment is far more valuable than the promise of the future”. Ally’s future, like all of ours, is a breath away.
Alyx has created a PowerPoint to share (converted to a video here) … it shows you her new routine – how she spends her day/s during this Lockdown. Stay safe, stay positive.