Caregiving, Disability, StaceyFH

October 16, 2020

Here’s to the Ones We’ll Call Team Primrose

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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There is an element of my life where I live in two worlds. One has me with pom poms and cheering, snapping photos of an exuberant child as he opens a package that has arrived in the mail. The other has me gritting my teeth in frustration, when I am hearing Will ask me for the 157th time that day for “xxx plush – yes” or “xxx VHS – coming in the mail” or “Primrose – yes”.

This story is not unique. There will be many families who live with a person with autism who will know exactly of what I’m going to talk about.

From the moment Will had control of his own limbs and could demonstrate his strong will (pardon the pun), he started demonstrating strong obsessive interests and behaviours. It started with his bottle. He carried that thing in his teeth – everywhere – and we were forever having to buy new rubber nipples because he’d chew holes in them. Then it was his fuzzy Winnie the Pooh blanket – that he still has to this day and can’t sleep without. Back in the beginning, I saw it as a cute, security blanket à la Linus from Peanuts gang type of thing. When the diagnosis of autism came at two and a half and as time went on and I learned more about Applied Behavioural Analysis (ABA), I started to understand that underneath these behaviours, there was a function.

In applied behaviour analysis, it is believed that all behaviour occurs for a reason. Technically speaking, behaviour analysts look at this idea with the behavioural principle that behaviour is maintained by a function. In the ABA field, there are four commonly accepted functions of behaviour:

Escape: The individual behaves in order to get out of or avoid doing something he/she does not want to do.

Attention: The individual behaves to get focused attention from parents, teachers, siblings, peers, or other people that are around them.

Access to Tangibles: The individual behaves in a certain way to get a preferred item or participate in an enjoyable activity.

Automatic Reinforcement: The individual behaves in a specific way because it feels good to them. This is sometimes referred to as sensory behaviours.

It took a while for it to become clear, but we began to understand that Will had a rolodex of special interests that could have been overlooked as ‘stuff he liked’, but because he overdosed on them to the point that it impeded his ability to learn or get on with his day, we started to view them as sensory behaviours (see Automatic Reinforcement above). I won’t turn this into a scientific article, but I should say that as time went on, together with Will’s therapy teams, we had to do a lot of heavy analysis to try to determine if these weren’t actual behaviours, but that he might truly also have a co-morbid diagnosis of Obsessive Compulsive Disorder. We have never ultimately figured it out, but we do now treat Will as if it is OCD. I think after all of this time, the diagnosis doesn’t really matter because now I see that Will’s anxiety drives all of it. Whether it is just “an autism thing” or if it’s a true “OCD thing” or if it’s just Will being a shit, we just try to keep his anxiety at a manageable threshold so that these behaviours and fixations don’t run his and our lives.

Floyd Pepper/Electric Mayhem Collectible Plush Doll (2003), Rock Music with the Muppets 1985 VHS tape, Scar/Lion King plush WITH the original Disney tag from 1994, Uniqua plush from the Backyardigans, specific Sesame Street episodes in Hebrew, real life troika wooden nesting cup dolls that appear briefly in an animated scene in Toy Story.. the list goes on of the elusive items we have had to search the whole world for, to keep this kid calm and happy.

Will’s dad and I have spent more money than I care to think about and more time scouring eBay, Kijiji and Amazon for the most obscure things, than I want to admit to.

This challenge is due to the Internet. It’s a blessing and a curse. Because the day that Will learned to spell and type his interests into that Google search window, was the day the dollar signs started haunting our dreams. He is a smart kid – his brain works in brilliant ways. He can find anything online… but that’s the problem. The internet produces images of things that existed in the past or things that belong to someone else or things that are merely shared photos. It doesn’t mean they’re for sale, it doesn’t mean it’s available, it doesn’t mean it’s affordable and it doesn’t mean it’s accessible. Try explaining that to Will when he can see it right there on his screen!!

Take for example, his longest obsession – Monster Clubhouse colouring book. Sesame Street produced an Elmo’s World VHS cassette series in 2001 and only a handful of episodes featured a vignette of a few random muppets that were called Monster Clubhouse. Naturally, Narf, Phoebe, Mel and Googel became Will’s favourite characters. Will wasn’t even born in 2001 so by the time his interest was piqued, the show had already cancelled the segment and besides a mere book and CD-ROM, nothing was ever made to sell featuring these characters. Except for a random colouring book.

Monster Clubhouse Muppets

That stupid thing came into our life via a dollar store purchase and then once he knew it existed, he wanted new ones as soon as he had crinkled or coloured its pages. It didn’t matter that we had photocopied and pdf’d the whole thing. It wasn’t the same. He wanted the properly bound, actual book. We had copies shipped from all over the US, from book-sellers who charged disgusting amounts, one came in from Asia and my sister managed to snag one from her local dollar store as well. It was a nightmare because over the course of a few years, we literally bought up every known copy in the world, just to keep our sanity. He still asks for it to this day, and when we hear it spoken aloud, we know it’s one of the first markers on his anxiety scale that is leading towards a meltdown.

Now – I know there will be people out there who have something to say about this. This will bring out the ABA experts, the autism mamas who like to school the other mamas who they think haven’t got it right. I promise you that after seventeen years, while I am always open to learning new ways of doing things to make life better for my guys, I’m also very aware of the consequences of my decisions. I have learned to choose my battles and I have also learned the balance of tempering expectations and rewarding good effort. I am broke ALL THE TIME. This cost his dad and I a fortune. But we space these ‘treats’ out throughout the year, set aside a lot of things for Christmas and birthdays and for every other minute of the year, we master the art of distraction, deferral and diverting disaster.

The avocado story might be the best way for you to imagine how difficult this is to manage. It started when we lived in Calgary and he was 7 or 8. Will developed his dad’s love for Pearl Jam (which also led to the purchase of every album they have ever put out on iTunes – but telling you the story of how he learned to rack up over $600 worth of charges to my credit card would take up another 2000 words here). Somehow along the way he became fixated on the avocado album.

Will wanted a real life avocado. We would draw them for him and he would carry it around with him everywhere. Don’t ask me why the actual album cover didn’t cut it, I haven’t been able to figure that part out. One day at school, one of Will’s teachers was very excited to tell me that she had brought in an avocado for Will because he had been talking about it so much. That was it. Now that he saw that they exist in real life (I had avoided it), it’s all he wanted. He won’t dare eat one though! Shortly after this, we moved across country and back to Ontario – important to note because it explains how this massive change might have caused a massive spike in Will’s anxiety. The demands for avocado was constant. We had friends who found us wooden avocados from a trip to Africa, some who found avocado ornaments from the US, someone suggested clay or other sculpting material so we made some homemade ones as well. They didn’t cut it. We bought him an avocado.

The avocado had to be cut in half so it could look like that one on the cover. The colours had to be perfect. Have you ever left out an avocado on the counter? The yellow and green turns brown pretty quick. Will would carry that half-cut avocado, he’d stare at it intently, then he’d scrape that brown stuff off with his finger and flick it all through the house. My house was literally starting to look like it was covered in snot. This might sound funny or you might be wondering why we put up with this, but at the same time that we were dealing with the avocado, Will was falling apart. He was aggressive to a level that we had never dealt with before and his meltdowns were happening all day long. We were just trying to cope and manage his anxiety as best we could. If it meant buying and replacing up to 4 avocados a day, that’s what we had to do.

But because we couldn’t get a handle on his anxiety things got worse. Will couldn’t participate in his school outings to the grocery store anymore because of the meltdowns and his effort to grab all the avocados. He couldn’t take the school bus/transit anymore, because he was melting down when the driver would pass the grocery store. We literally had to find new routes to drive, to avoid passing grocery stores because he tried to jump out of the car when we would pass one. It got to the point where we could only drive if there was a second adult sitting with him in the backseat to prevent him leaping from the moving vehicle. We were living a nightmare. It took over a year, but it wasn’t until we were able to create an environment for Will where he felt better (got him into the appropriate school setting), found a schedule filled with enriching activities and people to form connections with, gave him opportunities where he felt that he had control and choice, introduced a new medication.. that his anxiety went down and the need for the avocado diminished and we were able to wean him off of it. I’m exhausted just remembering it.

But here’s the best part of the story.

We are not alone as we navigate this with Will. While many people laugh at many of these stories – heck, of course it’s funny! — It’s actually a great idea for a children’s book if someone wants to illustrate it with me – the kid with the avocado obsession that lives in a house of snot. — Many people took the time to empathize with what we were dealing with. More times than I can count, I’ve turned to my network of people on Facebook and begged for them to search through their kids’ old toys and videos to see if they could find something that Will has discovered 15-20 years past its prime, to save me spending hundreds from vintage collectors. I have had friends and families all over the US, New Zealand and England find things unavailable to us here in Canada, who have shipped them to us to save the day (and my sanity). Even as recent as this past Thursday, Will’s dad (who is a teacher) asked his students if anyone had an old Uniqua stuffie (from the Backyardigans) and bless her heart, one of his 6th graders went home and she and her mom dug one up from storage and made our boy VERY happy.

Will with “Uniqua” and his Winnie the Pooh blanket

There is an underground network of helpers out there who don’t live this with us, but they take the time to imagine how difficult it must be and they step up. Our community is filled with the silent angels who volunteer behind the scenes to accomplish big things and get stuff done. But there’s another group out there of unsung empath-heroes and they’re my Facebook peeps. They read a post and hear my desperation (and that of other caregivers out there) and they go out of their way to scour the internet, put out the word to their own network of friends and facebook groups, search their crawlspaces for old VHS tapes, and they save the day. They literally, SAVE. THE. DAY.

I don’t know how else to repay them or to let them know how appreciative I am. I hope they know that even when Will moves on to the next obsession and he chucks aside that item that we searched so hard for, even when that happens he always comes back to it again and we always remember you for how you helped us.

I hope you remember that warm and fuzzy feeling you create when a package arrives in the mail. You’re not just making Will happy (or whatever other child, adult with a developmental or intellectual disability, or isolated seniors).. you are showing their caregivers that they are not alone. I hope this might inspire you to do something nice for someone else you might know who could use a pick-me-up. I might suggest making some cards and mailing them to some seniors in long-term-care. There is nothing like getting mail… Will will be the first to tell you that. And with the mention of mail, he might even tell you another story about a primrose marker (watch below).

Thank you to all of Team Primrose. We are grateful for you. Now if you happen to know someone who can hand-make some stuffies of the Monster Clubhouse characters… you know where to find me.

Stacey aka WillowjakMama

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  1. Harold & Lois Yellowlees says:

    Remember some of those events, but mostly the primrose marker! My kindergarten classroom had more markers than we would ever use in years—all boxes minus the primrose!
    In our minds you are the strongest “hero”

    • Stacey aka WillowjakMama says:

      Love you, Lois. You and Harold have always been such a wonderful support to my boys and I. We may not see you, but I always feel it. Thank you!

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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