I look back on the last two years and wonder why I did not write more posts? So much has happened. Perhaps because of how crazy it has been? Then I thought that maybe we could all use a little more on the lighter side of autism for some perspective.

For people on the autism spectrum like Alex, the last two years have been extremely challenging. Navigating the world as we knew it before the COVID pandemic was tough enough let alone understanding all of the constant changes that affect everything we do. The year 2020 started off pretty good as Alex was spending a lot of time with his worker, his Papa and social groups and preparing to volunteer again. Then everything changed.

When the first lockdowns occurred it was really tough. You can only walk the dog so many times and the lack of social connections – especially for someone whose behaviour could regress without those connections – was worrisome to say the least. We tried to keep things positive. I was fortunate to be able to work from home and that by default meant I was able to spend a lot more time with Alex.

Alex’s New Year’s Resolution for 2020 had been to lose weight and become more active – not an easy task during a pandemic. I was amazed as I watched his focus and determination through the first year of the pandemic to lose close to 100 lbs. It was remarkable. As unbelievable as that seems – I believe it was the one thing that really motivated him to stay positive throughout that first year and likely got him through this last year. On a side note I think I gained 20 of those pounds by osmosis!

I know it was not easy for him and I recall on one of our winter walks (there were a lot) when we came to a sidewalk covered in plowed snow and Alex said “well Mom, now I know what they mean by bumps in the road, you just climb over or walk around – a little more effort but you still stay on the path”. A bit profound for me at the time but that image now sticks in my head and is my go to when things get tough.

During the last year weight and food have however become an obsession for Alex and this is where it gets tricky with someone on the spectrum. Alex will constantly (and I mean several times a day) turn to his side and say “do you think I have gained any weight? How many calories in this meal? Did I do enough exercise today?”  Reassuring him and trying to get him to focus on a healthy weight has been a struggle. He has however gained more independence around cooking and a better understanding of nutrition through supports which has helped. He has learned to follow recipes and he cooks meals a few times a week which has also helped him manage his anxiety around food and his weight. It is now him telling us to watch what we eat and constantly (and I mean several times a day) reminding us to be healthier. I am fine hearing “Mom that will go straight to your hips” as I reach for a biscuit with my tea. Of course Alex says he won’t charge us for his expert advice – for now.

Alex also adapted to Zoom calls quite well and was fortunate to keep in touch with his minmax group online on Thursday nights. One evening I overheard him say “just so everyone knows my Mom is in the other room – she does these calls all day long and told me she has zoom fatigue. Hopefully no one else catches it – I think it makes you tired and grumpy”. How true! I am just grateful to the volunteers who kept the minmax group going online. They managed to have a few in person connections late in 2021 and I know Alex looks forward to reconnecting in person in 2022 (fingers crossed).

During some of the “reprieve” times when things opened up – one of the best things was for Alex to be able to spend more time again with his Papa (my dad) and his worker. I remember the joy he had being able to go strawberry picking or hiking or going to the antique market with my Dad. It reminded me of the importance of doing small things that make you happy.

The end of 2020 and into 2021 was really tough as my Dad was diagnosed with cancer and sadly passed in November. Alex had dealt with the loss of my Mom a few years ago but Alex really struggled during this last year. Alex and my Dad were very close and spent a lot of time together. Alex visited my Dad almost every day during the last few weeks he was at the hospice and always said what he was thinking.  During my Dad’s last few days at the hospice I recall Alex telling him “hey Papa, it’s okay to go to heaven on Halloween – Harry Houdini did”. More than anything, my Dad’s passing invalidated every theory and perception that people on the spectrum don’t have emotions. Nothing could be further from the truth. After my Dad’s funeral, Alex said to me “Mom, I know I don’t have outside tears but I am really crying on the inside”.  He shared such a special bond with my Dad and will have incredible memories forever. Alex has also decided to carry on some of the things they did together so I am now looking forward to comic shopping at flea markets and the pursuit to find the best hidden trails!

Alex can however still be quite blunt about his feelings. He recently started up a conversation with a grocery clerk at the check out and asked him what his plans were for the holidays. The clerk said “oh I am going to visit my grandparents”. Alex asked “do they live far away?” to which the clerk said “no they are about an hour north”. The clerk asked Alex “how about you? What are your plans?” Alex said “well I don’t think visiting my grandparents is possible. They live really far away”. “How far?” asked the clerk. “Too far” said Alex., “they are dead and now up in heaven”. “Oh I am sorry” said the clerk. To which Alex said “Oh no problem – likely way better celebrations up there anyways”.

So in reflecting over these last two years, while it has been hard, Alex ironically has kept me positive and in many ways has been my strength to get through some tough times. He never ceases to open my eyes to a way of thinking that is truly unique and to learn how to better manage my impatience. When the path forward is not always easy – he has reminded me not to stop – but to persevere around or over the bumps – all will be okay.