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.
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.
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*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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A month and a half of living in our new home and we’re still in boxes. I wasn’t kidding when I said we started over on this move; we have almost no furniture.
We have acquired a few random pieces through the charity of family and the adventure that is Craigslist (most notably a couch – a funky, slippery, bizarrely-shaped wonderful couch). Our dining room table, however, still sits in pieces after the hardware disappeared somewhere between Los Angeles and Vancouver. Several trips to IKEA have been fruitless as apparently they have changed the design of this very popular table and no longer carry the old hardware. Home Depot swears they don’t have what we need, but the friendly IKEA folks keep telling me the Home Depot folks are just being lazy. My table is an innocent victim of a retail war, so there it sits.
Our books, excess clothing, videos (yes, we still have some lonely VHS tapes), knick-knacks and what-nots have no home. They sit around the house in beautiful moving boxes, disturbed only by little people looking for something else to destroy. It’s enough to drive a stay-at-home mom bonkers.
Guess who isn’t bothered by the disarray? Yup, Jack. Jack thinks it’s awesome that we’re constantly unpacking boxes. For him, it’s a pasttime, a thing we do now. I’m guessing when the last box is eventually emptied he’s going to be wholly confused.
I was having a particularly bad evening recently after another trip to IKEA resulted in yet another set of worthless table screws. I was down, and somehow Jack knew it. He was hanging out with me while I cooked dinner, as is his wont.
“Your heart found us this house, mama. Your heart opened a door for us.”
Ok, seriously. Whose almost 5-year-old talks like that?
Mine does, and his heart is so big it carries me on my darkest days. He’s amazing, and that makes up for my screw-less table.
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We are finally at the end of our long summer’s journey, which means Jack has started school. And not just any school, kindergarten. Full day kindergarten. Big Boy School.
In case that wasn’t enough change and excitement, we have also decided that Jack (and all of our children) will be attending a French immersion school. Canada, a bilingual country, offers children the option of attending school in French, starting either in kindergarten (early immersion) or grade 6 (late immersion). Just as the name suggests, the children are immersed in French. No English until at least grade 3. Deep end all the way.
Why pile on the added stress of a foreign environment to an already new situation? Why not? Jack is a smart kid who needs to be stimulated constantly. He’s certainly getting that at his school. And while he frequently tells us, “I dont know how to learn how to speak French,” he’s learning. He greets his teacher with a hearty “bonjour!” in the morning. Of course his accent needs some polish, so it sounds more like “bojur.” We love it. We make him say it all the time. Someday he’ll get his pronounciation down, but until then hearing him speak French is as sweet as hearing my almost 2-year-old try to say, well, pretty much anything.
Jack loves school, and it shows. The special education program here is a breeze compared to the United States, and while he’s still going through the referral process, he has full support to help him be as mainstream as possible. He is settling in, and is excited each morning to get back to school.
I’m guessing the school day is taxing for Jack. It’s a much longer day than he’s used to, in a completely different language. How do I know it’s taxing? When Jack is done focusing on something, he lets loose. Like crazy, unbridled, nonstop motion loose. This is the cyclone I have dealt with each day upon his return from the halls of education. While I celebrate the fact that he’s loving school and it’s clearly exhausting his mind, his body is exhausting me.
As I’ve pointed out before, autism is contagious, and every afternoon now I have three small stimulation-seekers wreaking havok on my home and my mental stability. The other day, a rainy afternoon when I couldn’t send them outside and they were quite literally bouncing off the walls, I broke.
“Jack, you have to relax!”
“I don’t know how, mama.”
Truer words were never spoken. In a few weeks, life will even out again as it always does. In the meantime, if you need me in the afternoons, I’ll be the one hiding under the stairs.
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