Mautistic. Journal Of A Single ASD Mom: O PUMPKIN MY PUMPKIN

Transcription

1 Mautistic Journal Of A Single ASD Mom: O PUMPKIN MY PUMPKIN

2 Halloween This word has been the scariest word in my vocabulary since 2004.

3 Shortly after Owen (Aspie) turned three, he began having the most bizarre anxiety when it came to Halloween. The costumes frightened him, some with good cause, but others did not have any rhyme or reason. At least, no obvious rhyme or reason. Until Christmas, when Santa suddenly made him flip, flap and flop a la the meltdown mambo. Then hockey masks joined the list. It wasn't too long before my super mommy powers kicked in and I figured out that not being able to see someone's face caused my little guy to go into an extreme panic attack. Trick or treating was a nightmare. He refused to surrender the adventure of dressing up and walking the neighbourhood with his cousins. In fact, he starts preparing his costume plans for Halloween every year on November 1st and is a 365 day event, including the inevitable two or three costume changes throughout the day and last minute inspirations to be yet again... something else for Halloween this year. Having to re-negotiate my entire life around avoiding Halloween decorations and displays for the months of September and October, was challenging but not un-do-able. I could even deal with the grabbing me so hard he nearly took me to the sidewalk whenever he saw something orange or black and the other people in costumes that required me to become MOTHER: THE HUMAN SHIELD AND INVISIBILITY CLOAK. It was the actual getting to the door. Taking those scandalous five to twenty steps required to get the candy. Painful and distressing. Besides the obvious 'hey kid I am not hauling my cookies all over the neighbour to NOT get candy!!' I firmly believe that if we made him challenge his threshold we could expand it. He MUST do things that make him uncomfortable and he will not grow. As human beings we do this every day and have mild, moderate and severe anxiety, whether we have a diagnosis or not. The difference with Owen is the intensity and LOUDNESS of his reaction. Today I can tell you with confidence that I actually stopped caring about what other people thought of my parenting a long time ago. However, it took an awful lot of stares, mutterings, dirty looks, passing commentary and outright interference during my child management duties that built up the skin thickness to it's current pachyderm consistency.

4 Yes, I pushed him. Yes, he kicked up HOLY HELL. Yes, it would have been easier to just buy a flipping bag of candy the next day when it went on sale. But giving up and giving in would do absolutely nothing to help make Owen better at handling himself in public and challenging fear. And little candy isn't better tasting then large candy...having candy was not the point. GETTING CANDY WAS!!!! The reward had to be bigger than the anxiety. The benefit had to outweigh the agitation. Which is why I always got the most candy anyway. My aggravation pay. With Owen, the reward is never a consideration to overcome the fear. The anxiety penetrates so deeply that he will turn down every bribe under the sun to avoid doing something that causes him discomfort. In fact, recently we went through one of the worst depressions and social withdrawals he has ever gone through. He let me pack up the XBOX, the GAMECUBE and the CABLE to try and give him nothing interesting to do at home. Nothing given and nothing taken could induce him to leave the house for any reason. So, because we had successfully negotiated the Halloween into a successful part of our life. We eventually did figure this out too. Desensitization. If I can't buy it away and I can't sell it away, maybe I have to make it stop hurting to make it go away. That's what we did. So, I fought in the street and every year we made it up

5 a few more doorsteps. I did a clinical explanation of the history of masques in general and the specific ones belonging to horror movie characters. For the horror movie characters I taught him the reasons why people liked to be scared. How this was achieved with costume. Each fear I deconstructed to it's fundamental core and addressed it from a non passionate and rational point of view. When he was afraid, I agreed with him and explained what made him afraid and why it was supposed to make him feel that way which, oddly enough, reduced the fear to a more manageable level. Every year, we would work harder at getting into the stores that had orange and black and the other traditional decor. We eventually were able to buy things from aisles near the costumes, and then get into the aisles themselves. Last year, not only did he do Halloween like a Neuro-typical kid, he did it with gusto. He raced ahead of me and gave me the first real October 31 st workout of my mommyhood. And, with sincere pride, he asked to go to the house that always has the scary decorations, the dry ice, light show and the loud music playing. You know that house. Looking forward to what this year brings. I know what it won't bring. It won't bring Kelly out to trick-or-treat. The same mom-gut feeling that made me push Owen made me retreat with Kelly (Classic Autism/Severe delay). As with everything in our lives my children are polar opposites. Opposite on the spectrum and opposite in disposition. Miss Kelly-Rose is a fistful of dynamite on her quiet days. It's not just that she hates dressing in regular clothes and costumes are even less desirable. It's not just that because she is a runner and a ground flopper when we go out in public so she requires being in a transport chair for her safety so we are extremely limited to the houses we can go to. The last year we went out I tried to let her out of her chair to go to the door with the other kids. She was

6 kicking up a big fuss to go. Before I describe what happened next. I would like to explain that she was very young, and in the early stages of her therapy. She had no language and her cognitive function was about that of a 12month old in most areas. Her delay is extremely severe and her behaviour has always been challenging. As I attempt to coach her to hold her bag open and as the person reaches out to drop a handful of goodies, she bolts through the small opening between the person and the door frame. She runs into the front living room. THE SHOW ROOM. The red velvet rope not a single fibre of carpet has been damaged or out of place room. The immaculate and beautiful room that was now covered in muddy boot prints while Kelly runs in circles giggling like a lunatic and everyone but her is now flipping out. I go to get her and she drops like a lead balloon to the floor and starts screaming. So, I had no choice but to, with the most unimaginably worst excuse for safe body mechanics you can imagine, bend down, haul her over my shoulder, stand up and exit while being kicked and punched and screamed at hoping that the family could here me repeat sorry a gagillion times and praying that they couldn't see the tears streaming down my face. THIS, happened too early in my skin thickness development. I was beyond humiliated. I know that it wasn't her fault. She was just being herself. Her lack of impulse control is one of those things that is hard to deal with and was still hard to explain in my early years of mautism. In fact, just recently, despite all the improvements she has made and as far as she has come, earlier this year on a walk by the lake she took a notion to bolt for the cliff in an attempt to go down to the water. If I had not literally chased her and tackled her to the ground she would have gone over and fallen easily 100ft into rock and gravel. My reaction to both were very much the same. She, cannot control herself enough to be safe doing this activity. So, we must find and alternative. Kelly enjoys structured indoor fun for Halloween, and we choose our outdoor activity with low ground on all sides.

7 Their needs are so radically different that as their mom, I need to be bi-polar, if you will, in my parenting philosophy. They each need a different set of standards. It seems unfair on the outset. But when you really look close, isn't what finding what is the best for each as an individual the best justice I can offer them as a parent? Yes, I do believe it is. Rose Marie (MAUTISTIC) is the parent of Owen and Kelly both on the Autism Spectrum. She is the author of Kelly's Special Friend, Community Producer and Co-Host of the TV series MAUTISTIC and the 2011 Mother Of Distinction Award recipient. She is also the creator and editor of Dif'rent Drumm her project to help bring Special Needs Lifestyle and Culture to the community and make exceptionality a visible part of mainstream culture.