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.
Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read MoreBecoming Aware
One of the things I wonder about is how Jack will be when he grows up. Will he be self-sufficient? Will he have an amazing job? Will he have a wife and children? And also, at what age will he “become aware” of how his brain is different?
All parents wonder and worry about their child’s future. Special needs parents worry on a different level, hoping the child will be able to cope and make their way without constant support. And for those children who cannot, we hope the safety net will always be strong.
Jack is only five and a half years old, so while I think about those long-term things, I’m focused on the “right now.” And right now, I’m thinking about grade one. How will he be in a class where he’s required to sit at a desk most of the day? What will he be like as the school structure tightens? At what point will Jack begin to realize that he’s slightly “different?”
We’ve never sheltered Jack. He’s always been in “inclusive” or “collaborative” classrooms, which are integrated with both special needs and neuro-typical children. He’s almost always had a Behavioural Interventionist (BI in the US) or Special Education Assistant (SEA in Canada), but the other children have merely treated those individuals as an additional teacher, not a thing that makes Jack different. Perhaps at this age children are just still blissfully ignorant of difference.
We have, however, noticed little signs that Jack is recognizing his quirks and needs. In the classroom, Jack knows when he is overwhelmed and needs to to take a “break” (he can go out into the hall or another room to escape the chaos). At home, he often spends hours building train tracks, or sometimes he sits and watches Treehouse. I know that sounds like every other five-year-old, but in Jack’s case, he seems pretty in tune with what activity suits his sensory needs at any given time.
It’s the wild card situations that still give me pause and worry – will Jack be ok in a new hotel on our vacation? Will he enjoy the various activities we have planned over spring break? Will Jack integrate well at a friend’s birthday party? In our five-and-a-half years together, I’ve gotten pretty good at anticipating Jack’s needs and acting accordingly, but as he gets older, I am surprised more and more with how much less I need to do. Of course I still need to manage our time (time spent at an activity, time spent away from routine, time until meals and bedtime, etc), but that is the endless job of a mother – Time Manager. Nowadays, if I do my job well, Jack is fine and thrives.
We took a short trip to Victoria, BC for spring break, and got to see and do a lot of wonderful things. We planned a visit to the Victoria Butterfly Gardens to spend some time with the butterflies. Jack was excited, but I wondered what he’d do once we got there. We had visited the Vancouver Aquarium the week before, and he had been overwhelmed by the Amazon exhibit that included butterflies. He swore this time would be different, and he was all in.
Due to perfect time management on my part, we arrived right in the middle of naptime. Peak problem time for not only Jack, but all three boys. Lennon whined to go home immediately, Kieran kept trying to get into the river that ran throughout the sanctuary, and Jack swatted at the beautiful Blue Morpho butterflies soaring past him. As much as he swore he loved them, every time they came near he jumped and batted at them.
We persevered, and eventually got what we had hoped for – a butterfly encounter, thanks to a box of brand-new baby butterflies who much more amenable to being touched and worn by little boys.
Jack had a great time, and loved every part of it. Hindsight saved the experience. Well, hindsight and some baby butterflies with a lot of patience.
So I guess the wild card situations are getting better, too. Perhaps it’s as much Jack getting to know himself as it is my awesome time management skills. At a birthday party recently, he said something that gave me a little glimpse of things to come. I was concerned about a party with a lot of children Jack didn’t know, right in the middle of the afternoon (again, naptime). The party was close to home, though, so I figured we could always leave if things got hairy for him.
As the children mingled and played before the party activities, Jack was buzzing around the house like a little bee checking everything out.
“There’s a lot of stuff to see here,” he told me.
“Yup.”
Jack went on. “It makes my motor go all weird.” He gave me a big smile and moved on to the next thing.
(I am always impressed with this home, let me add. They have three little boys about the same age as mine, yet manage to somehow make it look as if adults live there, too. I haven’t quite conquered the monkey to big people ratio and am infinitely jealous.)
Jack finished his tour of the home, and settled in to check out their toys, in a playroom separate from most of the other kids. He played every party game, he ate hot dogs and cake, and had a ball.
When we got home, I asked Jack what his favourite part of the party was. He told me he liked being able to go back and forth between the party and the toy room. Adaptation, realized.
I have fears and anticipation for Jack’s future, but I’m slowly recognizing that I am not in control – Jack is. And as Jack gets to know himself, he’ll take the reigns from me. I’m not sure I’ll be ready to turn them over when the time comes, but then, what mother ever is?
Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read MoreA Little Support
I am absolutely blown away at how quickly so many people jumped to help my friend in Michigan. It’s gotten me thinking about our history in special education, and I’ve realized something very important: we’ve made it this far not by relying on the professionals and agencies, but by seeking out other parents who have walked the same path. Every major question I’ve had has been answered by a mom in the preschool waiting room, a dad on the playground, or a complete stranger I’ve bonded with over vegetables and autism at the local grocery.
Autism is a social disease, but not always in a bad way. Autism has made me unafraid to approach a mom at a water park here in British Columbia and ask about how to get my son into the special education program. Autism made me bold enough to approach another mom of three boys at our local park. That particular encounter taught us how to get Jack into the French Immersion program here, and which school to try when the local school was full.
Autism has alternately made it hard for my child to be social, and made it easier for me.
So here’s my idea. I’m going to start a network of sorts here on the site of people who would like to be open to help others. If you’re interested (your commitment would be only to answer questions and guide others), let me know. If you need help, let me know and I’ll either put you in contact with someone in your area, or put the word out. We can help each other get the best results.
Let’s be social, shall we?
Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read MoreI Don't Know How, Mama
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.
Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read More
