An Inconvenient Truth
It’s time for me to accept the truth: my son cannot go to the Real Canadian Superstore anymore. Every single visit ends with him screaming at the top of his lungs at the checkout, flailing his body to the ground and refusing to leave for some reason or another. I just can’t do it anymore.
Jack used to be great in the grocery store. We’ve always done the bulk of our shopping as a family, so he’s had years of experience. The only fear I ever had while shopping with him was the bathrooms at Target – they were horribly loud, and he would scream and grab at the doors to leave any time a toilet flushed or someone came over the loudspeaker. Considering I spent a great deal of his early life pregnant with his brothers and using the bathroom every ten minutes or so, this was a pretty big issue. Our amazing ABA Christine spent several Sundays at Target with us, helping him overcome his fear of the dreaded bathrooms. He’s still skittish, but more often than not he soldiers through.
Past that, though, we’ve never really had a problem with him in stores. I mean, more than any other young child (we’ve all had that shopping trip from hell with the screeching, flailing, unhappy kid).
Enter the Real Canadian Superstore, and the beginning of the trying times.
At first, we attributed Jack’s outbursts to the free cookies they give away in the bakery. We assumed there were artificial colors or flavors or another nefarious ingredient causing his sudden decline. When we put a stop to the cookie train, we figured the tantrums would end, too. We were quite wrong. We tried everything: we went before the park, after the park, in the morning, in the evening, on a full stomach, by himself, with his brothers, in the cart and letting him run free. Every trip has ended the same way, with him completely falling apart at the register.
Sometimes it’s because I didn’t purchase something he thought we were going to buy (craft supplies last week, charcoal the other day). Sometimes it’s because he wants to put the money into the machine at the U-Scan. Sometimes it’s just a day that ends in “y”. There is no pattern.
So today, after an especially difficult time getting Jack out to the car and into his seat (he had been screaming at the top of his lungs inside the store and wouldn’t calm down, so David had to take him out), I gave up. I sat in my seat, looked at my husband, and gave up.
I want it known that I don’t give up easily. I fight on a daily basis so that my child can and will do “normal” things like go to the grocery store with his family without losing his mind. I fight so other people will not judge him or give him a label that locks him in a little box. I fight out loud so that people will stare at me, not him. I want him stared at because of the joy he radiates, not the anxiety and frustration his mind causes him sometimes.
But I just can’t deal with the Superstore anymore. At least not until I can find a Canadian version of Christine to help figure out what bugs him so much about that particular establishment. It’s a puzzle we’ll solve in time, I know, but today I need a break. I think Jack needs a break, too. We’ll find a new store he can tolerate, or I’ll do all of the shopping while he stays in the car with his Daddy.
I’m giving up today, so I can fight again tomorrow.
"No Kids"? No Thanks.
I read an article today about a “movement” that’s gaining momentum: no kids allowed. No kids in restaurants. Adults-only shopping hours at grocery stores. Children not allowed on airlines, in movie theatres, in certain outdoor parks. The comments below the article all seemed to agree, adding other locations a “no kids allowed” policy might be implemented (Disneyland???). When I finished reading, I sat down and had a good, old-fashioned anxiety attack.
It took me a bit to understand why I was having such a visceral reaction. After all, I don’t want my movie or meal ruined by a screaming child, either. I went over the article and comments in my head, and found the root of my dis-ease. The underlying message is not that adults would like to enjoy a quiet evening once in a while, it’s that children, by their very essence, are annoying and should be either controlled or kept at home.
I admit, I enjoy the “everyone pays the same price policy” at the Arclight Cinema in Los Angeles, where if you want to take your infant to the movies, you pay full price. It makes for a consistently nicer movie-going experience than most theatres. They even have 21+ shows where they sell alcohol for those who want a truly child-free experience (or just want to have some drinks with their movie). I also have no problem with restaurants that do not offer a separate child menu. Having worked in high-end restaurants for years, I know that families who enjoy finer dining experiences with their children know how to order for them without inconveniencing the kitchen (or they learn quickly). We have always taken our children to nice restaurants, and rarely order “kid meals.”
My point is the people behind the “no kids” movement seem to want a child-free life. They don’t want to encounter children anywhere it’s not “acceptable,” and want the kids they do come across to be well-behaved. Many of the comments talked about children throwing tantrums in stores, acting out in restaurants and actually being on airplanes, and the unqualified parents who allow it to happen. In their eyes, any child who isn’t smiling and polite (or asleep) is an annoyance.
My children being annoying.
I’m certain there will be a backlash against this movement across the mommy blogosphere, and endless debate about where and when children should or should not be allowed. The idea I want discussed, though, and the reason for my anxiety attack, is how autism fits into this Utopian adults-only world.
As I calmed down, I realized I had the same gut-wrenching feeling I get when Jack throws himself on the ground screeching, blocking the entrance to the grocery store (this happens pretty much every time we go there lately, for any number of reasons). It’s the same shaking inside that happens when we go to a restaurant and there’s no seating that will keep my kids contained (we like small chairs and a highchair for Kieran, or a booth where we can sit on the ends and block them in). The same tightening in my chest, clenched jaw and wringing hands I get when I even contemplate air travel.
I don’t worry about being judged. If I cared about what other people thought of me or my children when something unexpected happened I would never leave the house (although the stares at the grocery store or in the park when we try to leave and Jack melts down are pretty penetrating). What I fear is a society that has become so self-involved that it has lost sight of the importance of children, and expects them to act like something they’re not, like adults. I fear for a community that would rather me keep my child behind closed doors than have him and his not-always-stellar behaviour sully their afternoon.
And what of the mother in the grocery store dealing with a screeching child? According to the article’s commenters, I should immediately remove him when he acts out, and come back when he’s better (or better yet, leave him at home). What does that say to my child ? I’ll tell you what – it tells him a whole host of things in one action. By removing my tantruming son he learns that he can leave any situation whenever he wants by screaming. It teaches him that I don’t care about why he’s upset, just that he’s making people uncomfortable, which is more important than his needs. My child understands that his value as a person is less than his elders.
He is not less than you.
There are also other factors that may be at play – a mother with a screaming child may not have another chance to buy groceries and needs to push through. She may have a child who simply hates being in a shopping cart (yet she cannot allow him to run for various reasons). Or, she may feel the same way I do, that lessons must be learned, and sometimes it’s inconvenient. She may also have a special needs child who simply cannot follow made-up rules.
I have three young children and I understand that they can be loud sometimes. They often run, get worked-up and refuse to settle down. For these reasons and more we don’t take them a lot of places we don’t have to, like restaurants during peak business hours and movies in the evening. The times that we have to go somewhere with them that we wouldn’t ordinarily go, I break out in cold sweats until it’s over. I do not like when I can’t anticipate Jack’s behaviour; forewarned is forearmed. My kids are normally very well-behaved in restaurants, but if they haven’t napped or Jack is in a mood (which the others will follow), it can be a trying experience.
I can’t even think about flying without my stomach turning. We flew a lot with Jack when he was a baby, and have flown several times with two or three children in tow. The last flight was over two years ago, though, and I don’t know when we’ll fly again, even though my family is on the other side of the continent from us. Things have changed in two years, both with the airlines and our family. Each child requires their own seat now, which means we have to split up into two rows (and some unfortunate soul gets to sit with us). I cannot envision a four-hour span of time when any of my boys would sit still in a seat, and a simple airplane seat belt won’t keep them restrained. Delays, overbooking, car rentals, time zone changes and unhappy seatmates all add to my newfound fear of flying.
It’s the thought of getting through security, though, that keeps me up at night. The security line is a nightmare for families already, a juggling act of shoes and folding strollers and backpacks and unrestrained children forced to go through alone. I don’t know when Jack will object to being touched or get spooked and run away or simply throw himself to the ground and object wholly to the process. I can’t be certain neither of my other children will follow suit. It’s enough to keep me home, as much as I miss my family and I know they miss us.
Taking all of this into consideration, it’s amazing parents of special needs children fly at all. Heck, it’s amazing parents fly at all. But you know what? They do, and they pay good money to do it, too. Nobody truly enjoys being cooped up in an airplane for an extended period of time, but a little civility goes a long way. Creating rules against children traveling by air is nothing short of ageism.
The idea that there are people out there who would impose rules on where my children are allowed to be is laughable to me. It’s infuriating and obscene. Yes, there are parents who exercise questionable judgment and take their toddlers to the evening showtimes. There are parents who don’t pay a lot of attention to their kids in busy restaurants. And yes, there are mothers who let their children scream in the grocery store when they really don’t have to. There are also adults who have either forgotten what small children are like or think they were well-behaved at all times as youngsters. There are adults who think money can buy them an insulated life. There are adults who have no empathy, sympathy or common decency.
Parents of special needs children make choices every day about where they can and cannot go, sometimes changing plans in the blink of an eye. They juggle the comfort of their children, themselves, and yes, others. Sometimes their children are angels, and sometimes they are not. Their lives are difficult enough without added, arbitrary restriction.
If we teach our kids now that to be a child is to be annoying, they will pay that forward. If we show them that the needs of an adult to be comfortable circumcedes their need to be understood, we will all pay in the end. If we hide autism behind closed doors, we lose the future.
And now, a moment of zen.
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Frustration and Strength
One year ago next week, we moved our family from Los Angeles to British Columbia, just South of Vancouver. We left our life behind – my husband’s job, our friends, our autism support network – in search of one more suited to raising both physically and mentally healthy children.*
From the moment Jack was born we understood that we’d eventually have to leave Los Angeles. We weren’t sure where or when, we just knew that ultimately we didn’t want to raise our children in the chaos of Hollywood.
My husband was born in Canada, and we had talked about the possibility of moving there one day. We realized that a move of that magnitude would have to be planned well in advance, so three years ago we made a big decision: we decided that we would be moved and settled in time for Jack to start Kindergarten. We wanted him to start his elementary school career where he would most likely end it, in British Columbia.
Everyone knows the old adage about best-laid plans, and it turned out no differently for us. We spent the better part of two years thinking about moving, and the last two months packing frantically. There wasn’t much we could do ahead of our landing; Jack couldn’t be registered for school until a week before it opened. We spent our summer moving, exploring and getting to know our new homeland, with the endless support of my husband’s Canadian relatives.
Nobody we knew had any experience with autism in Canada, however, so we were pretty much on our own. I was led to believe that all would be fine once Jack started school, and essentially, it was. Well, eventually. Unlike the California system, where most ASD interventions are handled through the school district (with a few social interventions serviced by regional centres), any at-home services in British Columbia are dealt with through the medical system. Coming from a country where the mere whisper of autism could exclude my child from medical coverage for life, having him embraced by the medical community is nothing short of a miracle.
A miracle with a pretty startling caveat, unfortunately.
Jack was welcomed into his new school with open arms and given an IEP as quickly as possible. It took about six weeks to get it together, but that’s not the fault of the school or his integration teacher – had we enrolled him the previous winter like most children, everything would have been handled well before his arrival in the classroom.
The first two months of kindergarten were a test both for Jack and his teacher, as he had no in-class support. He was overwhelmed by the class size, the structure and the language (he is in a French immersion program, where nothing but French is spoken in the classroom). He was barely learning, as he wasn’t able to focus or attend. He frequently ran around in the halls and posed a flight risk, and therefore spent a lot of the early days sitting in the Assistant Principal’s office (not for punishment, but for the good of both his teacher and himself). It was heartbreaking to see my brilliant boy stuck in an “autism stereotype”: the unruly, unteachable child.
Then one day he was assigned a full-time SEA, Mme W. (a special education assistant, like his Behaviour Interventionists Eric and Charlie and Geoff in LA), and the planets shifted back into alignment. Within days Jack was attending, learning, and settling into his skin. He has blossomed under her guidance, and has thrived in the classroom. I know his teacher will attest to this. I also know she deserves a vacation somewhere warm this summer, although I’ll probably just give her some cookies.
Back to the miracle with a catch. While Jack was accepted into his school and given support without question, we were unable to get him any interventions through his medical plan without an “official” diagnosis of autism. Not a problem, I thought, as I have a binder four inches thick with reports and documentation and IEP’s. I dutifully filled out a pile of paperwork, made endless copies and shipped a package off to Victoria for approval by the Ministry of Health. Once we got their go-ahead, Jack would be eligible for government funding and we’d be able to set up some ABA for him.
The Ministry set us straight pretty quickly. My big huge binder meant nothing to them. In order to qualify for funding, Jack must be diagnosed by a Canadian doctor, who you can only reach by first navigating an obstacle course of bureaucracy. The first step is the family doctor, who then referred us to a pediatrician (a six-week wait), who sent us for a blood test and put us on the waiting list for the ONE clinic where they do diagnoses.
That waiting list is currently 18 months long.
I don’t really know what else to say other than I am stunned and amazed by this. Once children are “in” the system in British Columbia they receive top-notch care, but the wait can be interminable if the child is in need of immediate attention. There is a private clinic that will diagnose children quicker (their wait list is only four months the last time I checked), but unless we can somehow come up with $1500, that’s not an option.
The real kicker is British Columbia provides generous funding for children up to age six. After age six there is still money available, but it’s less than one-third the amount for younger children. Jack turns six in October, so there’s just no way we’ll get full funding for him. Even if we’d gotten him on the list the second we landed in Canada he most likely wouldn’t have been seen in time.
I have learned a lot about myself and our family in the last few months as we’ve wound our way through the BC autism maze. I have realized that we are so, so very lucky. There are many children on the too-long list that are unable to communicate, and won’t be able to until their number is drawn and their funding approved.
I know now how strong our personal autism foundation is, and what it took to get us here. Every hour spent in occupational therapy and speech therapy and the inclusive infant program and collaborative preschool was worth it. Every minute shared with the multitude of amazing people who gave of themselves so Jack could be the person he was meant to be is sacred.** Every period of change that Jack’s gone through, every disruption and every tantrum was another chance for us to learn how to support him. It was worth every second.
Most importantly, as frustrated as I am, I know that even without funding Jack will be ok. We will be ok. We made it through last summer without any services, and we’ll make it through this summer, too. We are strong, and we have been given the tools to guide us no matter the situation. If I didn’t think we could do this alone, I might be screaming.
Instead, I’m wondering what I can do, as one person, to help the system here. I’m thinking about the children who don’t have the foundation we have, whose families don’t have the tools or the strength to make it 18 months, through no fault of their own. Maybe we can help in some small, simple way. I hope so.
What a difference a year makes.
*********************************
*I would like to point out that many, many dear friends of ours are successfully raising children in Southern California, and I in no way mean any disrespect to them. As much as we wanted it to be, SoCal just wasn’t a good fit for us as a family.
**Amelia, Deborah, Shelby, Jane, Amanda, Eric, Charlie, Geoff, Jesse, Mrs. Colbin, Christine, and everyone else I’m forgetting right now… you know who you are, and you know you are loved.
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We have recently weathered a great storm. A constant, unending barrage. An unpredictable maelstrom.
We have survived Jack’s first loose tooth.
Losing the first baby tooth is a glorious occasion, a milestone eagerly anticipated in the Kindergarten set. It has all the trappings of great drama: the excitement at realizing a tooth is coming loose, the giddy nonstop wiggling, the breathtaking suspense as it eventually hangs by the tiniest of threads, and the sleeplessness waiting for the Tooth Fairy’s inaugural visit.
Jack had all of those things, but he also had something else: nonstop sensory input. Somehow the idea that a loose tooth in his head would go relatively unnoticed escaped us. Silly, silly us.
We first noticed the tooth in question in a rather shocking manner. I was taking photos of the boys while we waited for the Easter Train, and something looked askew in Jack’s smile. David looked closer and called me over. I was not prepared for what I saw.
That right there is Jack’s first adult tooth, already poking through behind the baby teeth still snug in his head. We just thought one of his front teeth looked crooked. It was, but that was only part of the story. Jack had what they call a “shark tooth.”
Jack had been acting out a lot around then, which we were chalking up to not feeling well or challenges at school or being out on a two-week Spring Break. All of these factors make for a disturbance in Jack’s force, causing problems with listening, paying attention, aggression and just generally being uncomfortable in his own skin. It wasn’t until someone on the Facebook page mentioned their child had an issue with loose teeth that the light bulb went off.
It made complete sense. Think about how much pain in your mouth bugs you. Now imagine you have a problem with sensory input, and turn that bug dial up to eleven. A loose tooth is no less than an electric current to the brain that won’t stop until it comes out.
Once I realized what was happening, I wanted that tooth out of his head. Unfortunately, Jack wasn’t on board with my plan. I told him to wiggle it and make it looser, and to try and pull it out. He wouldn’t have any part of it.
“The goo is holding it in,” he said. He said that eventually he would grow up and the “goo” would let go of his tooth and it would fall out on its own. I was curious as to what, exactly, the “goo” was.
According to Jack, we have bones and skin and goo that holds us all together. “When you break something in your body, you go to the hospital where the doctor layers bones and glues them together with goo until it’s all together again and you can leave.”
Of course.
Eventually the little tooth was hanging by the tiniest of threads, and still Jack wouldn’t touch it. I begged. I cajoled. I bribed. I feared he would swallow it while he slept. Alas, Jack held to his goo theory and went to bed. It fell out the next morning while he was getting dressed.
And there was much rejoicing… until Jack realized that the Tooth Fairy would be coming. While he slept. Jack was wholly convinced that TF would either a) touch him while trying to get the tooth and wake him up, or b) touch him and accidentally turn him into a present instead of the tooth. I have no idea where he came up with that one. Both options made him nervous.
Jack lay awake in his bed until close to midnight.
Jack finally fell asleep and The Tooth Fairy made his appearance (TF is a dude in this house, for some reason). He brought Jack a shiny Loon (a Canadian one dollar coin) and new toothbrushes for all the boys.
Wonder of wonders, miracle of miracles, the second that tooth fell out of Jack’s head he was back to “normal.” He was firing on all cylinders at school and sharp as a tack at home.
Then we realized that his other front tooth was loose, too.
Thankfully, Jack took stock of the situation and decided losing his tooth wasn’t the traumatic experience he had anticipated. He set upon making the second one come out post-haste, and tooth number two came out just a few days later.
Two down, eighteen more to go. I’m sure they’ll all come out as easily and drama-free as tooth number two.
Right?
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I am endlessly fortunate that Jack is an openly loving child. I am all too aware that autism often robs mothers of affectionate children, and I relish every hug and kiss and description.
Yes, description. Hugs from Jack come with an ongoing narrative, to make sure you’re aware of what’s happening.
“You feel my arm coming around you like a hug,” he’ll say. “You feel me hugging you.”
Indeed, I do, as his hugs make an impression. Jack hugs me like he’s either trying to strangle me or whisk me away to Inspiration Point. His hugs are intense.
I’m not sure, though, why Jack feels like he needs to explain what’s happening. Perhaps it’s a result of years spent in Occupational Therapy, where he’s learned how to process touch and feelings and delicate sensations. Lately, he’s been narrating emotional displays by others as well as his own.
When I ask if he’s happy about something, he says, “do you see my smile? I have a big smile.” He does, too.
The characters in his books who are surprised seem to flummox him: “What is he ‘o-ing’ about?”
Jack also seems to be thrown by sweat: “What is the water coming off of him for?” Try explaining anxiety to a child who is anxious at the drop of a hat. Easier said than done.
My child is loving and extremely verbal. It’s endearing to me, but I wonder if talking out every emotion will be a lifelong thing.
Jack’s future wife will be very patient, and very lucky.
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