Caregiving, Disability, StaceyFH

February 24, 2021

Autism Fatigue and Making Memories

I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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I wrote this piece for the Huffington Post on November 4, 2016.

I have some new thoughts to add at the end..

This Halloween, we drove to a neighbourhood where I knew it would be filled with young families who lived at houses with short driveways; two prerequisites for successful trick-or-treating with two boys with short attention spans.

I wasn’t taking any risks and a lot of math went into my decision: 13 years of Halloweens with about a 70% success rate (cut that in half if you consider that usually one boy out of two never made it past the first house); two hours of preparation and coaching before each outing; five pounds showing on Mom’s scale every year after devouring all the collected candy that the boys didn’t eat; one year of regret for giving up on the holiday and realizing it was a mistake.

My thirteen-year old boys, ‘O’ and ‘W’, are twins and they both have autism. To be completely honest, the best way to sum up how Halloweens have gone for my boys each year is that it’s been a whole lot of fuss for a photo op and a checkmark on the good parenting checklist for my effort.

And each November 1st, as I scrolled through Facebook and clicked ‘Like’ on fellow parents’ photos of their costumed kiddos and watch the ‘Likes’ rack up for my own, I felt more and more guilty that I put the boys through all that angst for something they just didn’t really seem to care about.

Fighting O to keep his costume on and to take off his iPad headphones and trying to motivate them both to go through the motions of walking to people’s doors to collect candy they don’t even eat just started to seem pretty pointless.

So a few years ago, Halloween started turning into one of those holidays that we just didn’t pay too much attention to. Costumes were still purchased, pumpkins still came home from school, but I never even mentioned the word Halloween until the day of, and I was indifferent to walking out our door to trick and treat our way up the street.

But instead of feeling like I had honoured my boys’ (silent/non-verbal) wishes to forego this silly holiday tradition, I felt that nagging Mama guilt that seems to follow me every step of the way of my journey as I parent these kids.

Because recently, I have become aware that something seems to be happening in our little autism family bubble. I’ll name it Autism Fatigue. After 13 years of nothing coming easy, 13 years of aforementioned preparation and coaching, and teaching and coping and surviving and striving and advocating and fighting and praying.. I got tired.

So having two non-verbal boys who appear pretty indifferent themselves to all things holiday-related, it was easy to just let it go. But when I took stock of how many other things I had just let go, I realized that my Autism Fatigue might be more of a catalyst than the boys’ lack of enthusiasm.

I had dropped the effort to continue Christmas traditions like decorating gingerbread houses and getting their pictures taken with Santa, I didn’t even bother to wrap gifts anymore because they didn’t seem to care about unwrapping them.

With all the unpleasant stinky, hormonal changes that come with puberty and the teenage years, a new maturity and understanding also seems to have arrived with my boys. With ‘W’, I don’t seem to have to spoon-feed him information like I used to have to; he seems to be putting things together all by himself.

About a month ago, he was pestering for something he saw on the Internet that he wanted me to buy for him. I told him that he would have to wait until Christmas. Next thing you know, he shows up in the kitchen dressed head to toe in a full Santa costume he had found in the crawl-space, booming “Merry Christmas everyone!” By golly, he gets it! Time to shake the sleep out of my eyes and get these guys back into the game — and for me to get back into making memories.

So we rounded up one avocado and one banana costume; we painted one pumpkin and carved a couple more at school; we counted down the days on the calendar until we hit October 31st. With our loot bags in hand, we wove through the throngs of miniature superheroes and princesses and I shadowed my boys and prompted their “trick-or-treats” and “thank-you’s” on Halloween Night.

My 5″2 boys (and their 5″4 Mama) have taken 13 years to figure out what Halloween is all about and appreciate each treat that lands itself in that loot bag. I am grateful to every homeowner who greeted my boys with a smile and compassion and who seemed to understand that their age and size didn’t represent kids who were milking Halloween’s freebie candy beyond the appropriate age limit.

I really believe that we are all just catching on to what the boys have been trying to tell me along — that Halloween is worth the effort.

Reading this back, nearly five years later, I realize how far my boys and I have come. When I wrote that, it had only been less than two years since their dad left and I was doing so much on my own. Outings had always had both Mom and Dad so we could each take a boy. Two of us meant less exhaustion and more security when we wanted to try new things.

It took a LOT of self-talk and deep breaths, a lot of planning and risk evaluation for me to start trying to create new memories out in the community on my own. I remember writing this that Halloween and I truly made the commitment to myself to keep on trying to attempt outings with the boys and it changed us! I had a lot of wins. Our world opened up, I felt my confidence grow and I could feel the boys flourish in their growing pride and maturity.

One of my many worries as we begin to have some hope that this pandemic might be lessening its grip on our lives and we see our freedom in sight, is that all of the setbacks that the boys have experienced in the past year, may have caused permanent damage.

An example of what I’m talking about is sleep. I don’t know how to break this down for it to make sense, especially since I can’t make sense of it myself, but with students returning back to the routine of school, Owen and Will should be loving that routine as well. But since last September, Will has not attended more than three out of five days a week and he averages only two. Anxiety is the prime reason, but sleep is the second. We never seem to get a full night sleep anymore. Someone wakes up at 1am and wakes the rest of us and we’re up until 6am. Sending them to school that sleep deprived is a guarantee that there will be behavioural meltdowns or runaways that will happen, so I have them stay home instead to catch another couple of hours of rest. If there wasn’t COVID, we (as in myself and the school staff) would have a lot more flexibility and willingness to work through the behaviours, but it’s just not safe right now.

But the biggest setback has been all the setbacks I’ve had with Will on any outings we were able to do before the more strict stay-at-home orders. With his anxiety through the roof, his urge to run away, run into people’s homes or just break out to do anything at all, means that we can’t even walk around the block on our own anymore. If he makes a run for it and I have Owen, who refuses to run after him with me, or if I can’t catch him quick enough – it’s not safe.

It means that our world has shrunk so small again. I’ve lost my confidence in my ability to take on the challenges of adventuring with the boys and I pray that it comes back when the pandemic eases its grip. That, or that I can find a way to hire a full-time aide to be my partner in making memories for the boys. I don’t want that autism fatigue to be part of our new normal.

Spring is around the corner. We’ll get through this.

Stacey aka WillowjakMama

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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