Spinning The Wheel

Even at this physical distance, I am still trying to process what happened in Toronto this week.

As the mother of two sons who have diagnoses on the autism spectrum, and equally the mother of a daughter, and a grandmother of a lovely, sharp female toddler; I may well be stumped for the right words, too.

Marc Lepine. Elliot Rodger. Alek Minassian. The misappropriation of the term incel.

At the risk of overstating the obvious, Western culture really hasn’t learned a damned thing or made the tamping down of misogyny a priority. Who, or what, can we blame? This is a world that welcomed a perverted parasite to the Oval Office with open arms, and everyone else who can see the emperor for the naked criminal he is are no closer to evicting him, try as they might. He’s all about his base, and it continues to be a dispiritingly strong one.

I also think parents still aren’t talking to their children about consent and entitlement in personal and romantic relationships. Look: it’s never a bad time to do it. And a child’s level of ability, or disability, shouldn’t even play into it. I am signed on to take a workshop next week on the topic of sex and disability, to help me bring my younger son up to speed, in a way he will hopefully understand, but I know there will be a need for remediation based on his personality, if only to remind him to keep his hands away from the front of his pants in public.

It is also incredibly important to keep top of mind that autism did not rent a cargo van and mount a sidewalk this week. Autism is not facing ten counts of first-degree murder and thirteen fourteen counts of attempted murder. Autism does not leave a breadcrumb trail of YouTube videos and a lengthy manifesto rife with vitriol towards the women who turn it down for sex. Autism does not radicalize itself.

We need to start with that, and prioritize conversations about mental health, generally, at home, at school, and in the workplace. Places where people gather, as a matter of course, on a daily basis.

And, since the personal is also political, we must reclaim the base. I am surprising myself by agreeing with Kanye West: self victimization is a disease. No one’s interests are served when it’s the practice to mollycoddle people who routinely behave badly and have learned that there is no real, lasting consequence for it.

If it is my job to teach my children how to get along in the world, why are so many others not out there doing the same? It’s time to get real.

It’s time to replace blame with basic human kindness. It’s time to turn the wheel.

A Mighty Fine Night Out


Sometimes the best things in life come to a person simply by being in the right place, at the right time.

For me, that happened to be while I was sitting in the cafeteria at work at noon-hour yesterday, checking my smartypants phone for messages while sipping my cream of broccoli soup. (This detail is important, because I want to assure myself as well as anyone else who may read this that not everything I have eaten lately has been pure crap. Ha.) Lo and behold, a charitable organization I have supported in various ways in the past, Children At Risk, was given a batch of tickets to last night’s Roger Daltrey concert at Scotiabank Place to distribute to its members. There were some left over, which were offered to other families of autistic kids through the autismsupportOttawa Yahoo! group. It did not concern me in the slightest where the seats were located. All I could think about was my 13-year-old Asper-dude, and how much an opportunity like this would completely rock his world in all the best possible ways. Something my ex-husband and I were successful at achieving together as parents, was keeping our children exposed to a wide variety of music. That, my friends, is the only explanation for a 13-year-old whose musical palate ranges from The Beatles to Culture Club to Metallica, and many esoteric points in between.

As it turned out, I was able to get four tickets for, get this, floor level seats. All we had to do was show up at the venue at a certain time, and look for a very tall man holding a sheaf of printed e-mails. Well, that, and I promised the Executive Director that I would renew my membership with Children At Risk, because the work they do is wonderful and necessary for local families of children who present all across the autism spectrum.

Guilty though I may be for openly mocking The Who for their endless run of “farewell concerts” in the ’80s and ’90s, I still kept a place for them near the top of my concert bucket-list. (A full Genesis reunion, anybody? Peter Gabriel says he’s up for it….) Pete Townshend no longer tours due to his hearing-related problems, and Keith Moon and John Entwistle have both long since left this earth, but Townshend’s younger brother Simon fills the guitarist’s role quite nicely and there is a definite physical resemblance between the two.

Anyway, last night DH, DD, DS13 and I were witness to a performance of the rock opera Tommy from start to finish, with oodles of psychedelic images, beginning with storks and fetuses, streaming on a video screen behind the band – and you know what? It worked seamlessly with the music. I tip my hat to whoever was responsible for the design. The audience was smaller than what I would have expected, given that Roger Daltrey is a rock n’ roll deity who provided the likes of Robert Plant with any real competition; at a reported 2,500 people, with most of them at floor level or in the 100-level seats. I don’t think anybody kept to their assigned seating last night, as even I (shy as I am) got as close as I could to the stage and stayed (swayed? Yeah, I danced, and I know Daltrey was watching) there; and I am told by DH, who heard it from one of the security guards, that Daltrey absolutely wanted it that way.

The show moved from Tommy to a random smattering of Who classics, including “Behind Blue Eyes” and a neat re-imagining of “Baba O’Riley” (familiar to the current generation as the opening theme song to “CSI: NY”). Daltrey told the audience that his throat surgeon wanted him to “sing something low” during his concert run, so we were also treated to a medley of Johnny Cash classics.

The show as a whole ran long (clocking in at over 2.5 hours), but only in terms of time – Daltrey could have gone on all night, it seemed, and anyone possessed of greater stamina than my DD would have more than happily obliged him.

#NoMoreBullies – Remembering Mitchell Wilson

("Supplied Photo" to The Toronto Star, Sep 25/11)

This is Mitchell Wilson.

At the age of 11, he had already borne the pain of losing his mother to cancer three years previously. He was living as fully and as courageously as he could despite a diagnosis of muscular dystrophy, a disease most of us never have to think twice about, except perhaps during Labor Day Weekend, when our local firefighters are out in the community on street corners collecting loose change in their helmets for a cure; and the annual Jerry Lewis telethon is aired on TV, preempting end-of-summer sitcom re-runs.

An encounter with a bully in November of 2010 changed everything, literally. To help keep him mobile and strong, Mitchell would take walks outdoors as often as 6 times per day. It was during one of these walks, armed with an iPhone belonging to his dad so that he could listen to music, that another 12-year-old child swarmed him single-handed, smashing Mitchell’s face into the pavement and breaking some of his teeth, all for the sake of acquiring that very iPhone. After that incident, and following further harassment from his attacker’s friends, Mitchell’s strength and will began to deteriorate dramatically, to the point that he stopped walking. In addition to dreading a return to school three weeks ago, he had also been served with a subpoena to go to court on the 28th of September to testify against the kid who’d attacked him for his father’s iPhone. Mitchell tied a plastic bag around his head in his bedroom, where his father found him on the first day of school, suffocated.

I read parts of this story several days ago, and I have been seething in anger ever since. The trigger point, apart from the fact that I am the mother of disabled children who have also withstood their share of bullying, was learning that the Crown plans to drop the charges against Mitchell’s attacker because Mitchell is unavailable to formally identify him in court.

I’m angry because in the fall of 1978, or thereabouts (my long-term memory falling far short of what it used to be), a boy named Anthony decided to act on the taunts of our Grade 1 classmates and shoved me face-first, from behind, into a stretch of rocks and other debris during lunch recess while we were all running to the playground. I was a kid who was sensitive, awkward, shy, and walked on my toes. In the school office, I remember being given a glass of lukewarm salt water with which to gargle and rinse out the blood that had seeped into my mouth. The physical scarring from that incident is still evident on my forehead and cheeks, and I can remember that my mother took down our bathroom mirror so that I wouldn’t have to see the damage to my face. I don’t remember anything of consequence happening to Anthony. I do recall that our teacher, Mrs. Fuder, asked me what I had done to cause him to trip me. I hadn’t much cared for her prior that incident, and liked her even less after that. In the years of cruel taunts and schoolyard scraps that followed, only the location of the school and names of the bullies would change. Small wonder then that by the time I reached high school, I was a shy, anxious mess who was more than happy to blend into the background after my parents allowed me to switch from the local Catholic school board to the public board. I won’t say that it did get better in high school, because in many ways it didn’t, but I did find some solace by becoming part of the group of other “misfits” my age. Certain aspects of the social anxiety that began in my childhood still linger to this day. I am 39 years old, with an adult diagnosis of generalized anxiety disorder, a stress-eater par excellence, and trust issues two miles long and 10 miles wide. I have spent far too many of the last 20 years living my life motivated purely out of fear. Fear of never being truly “accepted.” Fear of spending the rest of my life alone.

So, in a sense, I know all too well what Mitchell Wilson was going through. I look at his picture at the top of this post and I just want to reach in and tousle his hair to make him laugh, give him one more moment to feel like the wonderful, handsome boy he was, before all that was taken away from him by the selfish act of another child. Now that I am striving to become a person who no longer dwells on the past, it wrenches me to be writing about Mitchell in that very same tense. He should be here. People say that the bully didn’t take Mitchell’s life. While that may be technically true, since the bully didn’t physically enter Mitchell’s bedroom armed with that plastic bag, that bully should still be made to bear some responsibility for Mitchell’s death. As should the bully’s parents, since they created that monster, be it through indifference or sheer negligence.

I took this picture on Friday with my smartphone, after going out for a bite to eat with my sister and brother-in-law and the baby (a friend’s) they are caring for; and during the entire drive home I kept trying to piece together in my mind the various excuses for sorry-ass behaviour that have apparently created a world where the bar has been set (too) low for the accountabilities of parents and children.

Mitchell Wilson deserved far, far better than society’s lowered expectations. If it takes a village to raise a child, then every single one of us must learn to do better by our children, period. As a starting point, our current notions of what is acceptable, or who is expendable, must absolutely change.

Giving A Wormy Apple To The Teacher

Something refreshing that I have noticed about the Twitterverse and the Blogosphere, is the strong presence of other Special Needs Mamas. It makes me feel that in coming back, and being able to relate so closely to many of your stories, I’ve found my own personal Cheers.

I’ve blogged before about DS8 and his/our struggle with 22q11.2 Deletion Syndrome. From the summer of 2004 up until a year or so ago, DS8 was fed by G-tube. Knowing how to work a Kangaroo pump made learning how to use my smartphone this past summer seem almost, well, like child’s play.

We joined this special club after it was discovered that after multiple surgical interventions to repair a vascular ring, Tetralogy of Fallot with Pulmonary Atresia, and Pulmonary Stenosis, DS8 had lost the ability to swallow. And once the worst was over, so to speak, and his body recovered from the surgeries, he had zero interest in trying. There was no reason, physically, that he couldn’t take food by mouth and swallow it. Just no interest, whatsoever.

I argued against the tube placement. I thought more effort should have been made by the specialists to teach him how to eat again. In the brief period prior to what seemed like an endless cycle of surgeries, DS8 had been drinking from a baby bottle. (We won’t get into the medical mishandling of what was actually an allergy to penicillin and not an allergy to milk or soy proteins – that’s a blog post for another time.) But reality won out; DS8 weighed 12 pounds at 12 months of age. “Failure to thrive” – I hated that phrase, and still do.

So we learned how to use the feeding pump, and surprisingly it was not as gross or daunting as one might expect. It was just something we did, because it helped keep DS8 alive. We dealt with it all, including exploding MicKey buttons, without flinching. (And less than a year afterwards, in 2005, when DD was diagnosed with Type 1 Diabetes, doing the fingerpokes and injecting insulin similarly became something we do, because it keeps DD alive. Practicality overriding fear or discomfort, at least on the adults’ part.)

But you still worry, no matter how desensitized you think you are, especially when it comes time to send your special needs babies to school. The anxiety seemed to ramp up, at least for me, after DS8 graduated from the Special Ed. Systems program at his elementary school and was integrated into a Grade 2 classroom setting. Thankfully, we still had access to a nurse to assist with the tube feeds.

In the summer between Grades 2 and 3, DS8 began taking to the idea of eating by mouth, nothing fancy, no steaks or baked potatoes, but going from nothing to purées is still one helluva milestone to reach, especially for the boy who was not supposed to survive past his first birthday. We told him we would take him to Walt Disney World if he kept up his progress. Unfortunately, our travel budget has not yet caught up to DS8, but we’re still planning for it. (At 39, I  haven’t been to Orlando yet myself.)

Anyway, in Grades 2 and 3, and now Grade 4, DS8 was assigned to an E.A. whose attitude has always struck me as being just a bit too “casual” for a casual employee, and DS8 learned to manipulate her rather quickly. Snack and lunch-time became something of a battleground, with him refusing to eat and with her accepting it and choosing not to help us in breaking him of that habit, despite notes going back and forth in his communication book between our family and the school. It all came to a head this week, when my parents were finding unopened food containers in his schoolbag, and once again we sent a note. Someone from the school phoned my father at work in protest of our protest, if you will.

So this is what I sent directly to the school principal by email, this morning:

Dear (Ms. X):

I understand that someone from (the school) contacted my father (…) yesterday regarding DS8’s lunch and snacks.

Without putting too fine a point on it, DS8 must be encouraged to eat everything that is sent to school with him. As I am sure you are aware, DS8 no longer receives his nutrition through tube feedings. While the change from liquid tube feedings to solids (purées) is excellent news all-round, the fact still remains that he is “failure to thrive,” and every calorie counts. My parents offered sensible solutions for making the meal times less of a burden, such as adding the fruit purée to the main meal. It shouldn’t matter how appetizing it looks to us, or how “time-consuming” it is for an adult to have to sit there with him – DS8 must eat. As for documenting his food intake, it takes no time at all to do it, and it’s been done ever since he started school. His paediatrician and dietician both require this information on an ongoing basis. Moreover, with winter coming, DS8 needs to maintain his weight, ideally gaining pounds, to help his compromised immune system fight off the colds and flu bugs that the rest of us seldom think twice about.

Should the E.A. who has been assigned to him not wish to spend the 10-15 minutes it would normally take to ensure that DS8 eats his puddings and his lunches, even going so far as to actually put spoon-to-lips, might I suggest asking his twin sister (DD) to help out? They can eat together with minimal disruption to their daily program.

As his mother, I am more than aware that DS8 can be difficult to handle, despite his usual sunny disposition. I completely understand the need for the E.A. to have some time to herself at lunch-hour. I also wish I could say that it’s not that big a deal if DS8 misses all or part of a meal, as one might presume with a “normal” child. But it is, and he can’t. Therefore, I would appreciate the school’s full cooperation with this matter.

If you have any further questions or concerns, please contact me.

Regards,

Victoria Martin

Maybe I’m being a tad unreasonable, but I have been waiting for some sort of response over the last four hours, and so far? Nothing. Especially when it seemed to be such a matter of great importance yesterday.

I’d love to hear your thoughts, fellow Special Needs Mamas. You know where to find me.