As I looked at the option “write” on my wordpress account my anxiety noted that it was present. How can I write when there are no immediate wins during this time? Folks including myself like feel-good stories especially during the holidays and especially when times are rough like, say during a pandemic. However writing is therapeutic for me so a-writin’ I will go. Spell check is my first non-fan of the post as it seems “uninspirational” is not a word and I got the dreaded red line. I will let you know my personality A-ish has a difficult time letting that bloody red line sit there. 🙂
Strangely these days I am reminded of a very difficult time in our autism journey. A time where Hannah was experiencing many wins in her (then) severe autism. Hannah was in elementary school and was equipped with top notch staff within her school and through St. Amant working with the ABA program. Hannah’s autism was such that she was unable to do simple tasks like sit at a desk, stand in line with her classmates (obviously if you cannot stand in line you cannot walk in line), and generally just “be” with others without behaviours. Her behaviours were atypical of autism HEY! I think we should win some sort of award – not typical for the typical and not typical for the atypical! Kind of an a.a.typical (?) She did not have angry tantrums but rather her behaviours came out in laughing fits and falling to the ground.
The laughing fits were extremely difficult to deal with in the earlier years of her life. They were weird, intense and long lasting (sometimes days). During these years we did not have access to the internet like we do now and relied on books, television shows and articles from newspapers or magazines. Autism in girls had not been studied and laughing fits were a symptom that was not highly recognized.
Hannah’s staff in the early years had an extremely difficult job in working with her. Her school EA’s and her home ABA tutors helped her overcome her autism barriers and her anxiety with lots of blood, sweat and tears (probably literally – except for the blood … but she did scratch my cornea once – a bloodless crime). During the holiday season in December the elementary school children worked on their programs, memorizing lines to poems and songs. Of course Hannah was unable to memorize lines and songs or even speak lines or sing songs. Her job during this time was to practice being. Being with her peers in a crowd, walking in a line without falling down or starting an autism laughing fit, sitting with her classmates without autism and anxiety behaviours, standing when her classmates stood. Really just existing while her peers performed.
At the beginning of school which coincided with her late autism diagnosis this would have seemed impossible. But the consistent work of her staff made it possible for Hannah to succeed. The weeks of practice, working through her tantrums, taking it step by step and bit by bit was working.
The day of the program came and I was focused in on Hannah’s accomplishments. Hannah was able to get up, stand in line, walk with her peers and sit in the gymnasium decorated for Christmas. She could sit in the bleachers with her EA by her side! All those who knew and loved her were extremely proud! But I was not prepared for was comparison. The blatant comparison of her peers and the performances of the children and seeing Hannah sit and cope. One wrong move would be a spectacle. Anything that would set Hannah off would mean autism behaviours, likely a huge laughing fit which the crowd would not understand and deem that Hannah was a really happy child. And likely laugh alongside her in ignorant delight.
Nothing happened and the children performed as Hannah sat. I could feel the pride of the parents and the grandparents as their children performed and sat. My heart broke into pieces as the minutes carried on. I was not prepared for this. As the concert ended and people filed out I sat in my chair and cried. While the work she and her staff were as great as all the work put into the Christmas program it looked piddly paired beside the Christmas extravaganza.
I soon decided to vet the amount of school functions I would attend knowing that the attendance comes at a cost. Hannah’s staff continued to work and expect things from Hannah throughout her growing up years.
Years later I forget about that emotional Christmas program. I forget that Hannah used to not be able to stand beside a person. I take for granted that I can call her name to start a conversation and she recognizes that. I forget that the skills she has came with hours and hours and hours and hours of work.
During this pandemic everyone’s issues are heightened. In our province we are at a Code Red which means no gathering of people and only essential products are available for in store purchase. In our small town our numbers have been high and we take the care of our vulnerable adult daughter very seriously. The virus is forcing us to lay low, to do less outside our safe bubbles and to spend more time with our safe bubbles. For us here it means our days are Hannah and myself at home with no supports. We are being brought back to 24/7 of no respite and now no friends or outings for her. Every day Hannah claims her mantra/demand on me “We’re going to have FUN today” to which I make up some lame ass event like driving to the post office which will BE TOTALLY RAD.
I have been struggling with feeling overwhelmed, depressed, hopeless, angry when our days have actually been going very well and fast. But then I remember something I read and believe. It is okay to feel overwhelmed and all the feels of that and know that you are doing it. It is okay to feel joyous yet anxious about the future. We have much to be thankful for among the feelings of much to be anxious about.
Hannah is enjoying the countdown to when Christmas is here. She enjoys opening her presents and really enjoys giving gifts. These are things that have not been taught but are possible due to the years of intense, hard work. We know this is not forever and soon(ish) the virus will be under (more) control and our lives will start to open up again.
“Inspiration” is defined as “something that makes one want to do something”. It does not say that “inspiration” has to be an extremely moving or over the top experience but rather “want to do something”. So am I inspired? Why yes – when I look back at her journey I definitely am inspired to keep going, to expect the unexpected even though that expectation may be low.
We wish you all safety during this holiday season. Please make good decisions to slow and stop the spread of Covid-19 and to remember the true meaning of Christmas during this time. The actof not being selfish and “do what I want when I want it” is actually very Christmassy. Know that even if you do not have a vulnerable person in your life they actually do exist. Celebrate safely now – our tables may be empty this year but then we can anticipate the filling of ALL chairs next year.