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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Lately I’ve been thinking a lot about self-care, mainly, the preservation of my own sanity. The second we decided to have a third child, heck the second we decided to have our first child, I willingly signed away my mental health. I’m ok with that, I accept that mothers need at least a modicum of insanity to survive the toddler years.
(I’m assuming the same goes for the pre-teen, teen, young adult and older adult years as well, but I’m not there yet. I’m sure I’ll let you know as it happens).
Autism has, of course, added its own extra spice to my life. Any stressful situation involving keeping multiple small children alive and unharmed is that much more intense if the sensory overload beast raises its ugly head.
On top of everything, I have had a horrible spate of computer tragedies. My laptop got a nasty virus, and while I was uploading the entire contents of my hard drive to Carbonite* (an online storage service I have since built an altar to in my home), it imploded. Indeed, the drive looked more like a bad rotor from my minivan than a computer component. I moved everything to my geriatric PC… which lasted about two weeks before the motherboard blew out.
My suicidal hard drive. Or a brake rotor. I’m not exactly sure.
I’m not sure what I did to drive my computers to depression and suicide, but I hope they’re at peace now.
I have been trying to find my Happy Place to compensate. I have joined several amazing Facebook pages that bring me Zen straight to my news feed**. I am making a concerted effort to take time for listening to music, which always makes me feel human again (yes, I watched the Lady Gaga concert on HBO by myself. And yes, I sang and danced along). I’m going to find a drop-in yoga class.
But mostly, I’m going to take some time to heal myself. I believe in the amazing powers of the human brain. How can I not? I have Jack, who every single day shows me how magical brain power can be. Somewhere along the line I got caught up in the mire of my life and forgot that I have the ability to create my own happy.
The other day Jack came home from school with his usual gusto. “I’m back! Hey everyone, I’m home!” he shouted as he charged in the door. He rushed into my arms for a hug, and as he looked into my eyes, I remembered. My child is happy, even though his days are a challenge. My child finds joy in returning home, returning to me. My child is, so often, my teacher.
“I love you, baby,” I told him. “You’re awesome.”
“But, mama,” he said. “I’m not a hero.”
I beg to differ.
My hero
Special Needs Mama
There was a convention in Texas not too long ago for mothers of special needs children. More than a support group, rather, encouragement for “special needs moms” to find solace and healing and strength to continue in their everyday lives. I was shocked that I hadn’t thought of it before.
I am a mother of a special needs child. I am not a hero, I am not special, I am just a mom. I have two neurotypical children, and I have one child with high-functioning autism. I often wonder which of them is more demanding of my resources.
Autism is a roller-coaster, but so is parenting in general. My days are filled with laughter and tantrums, and sometimes the laughter is manic and the tantrums are epic. I plan my life around my children, as all moms do.
As I looked at the website for the event, though, I took a step outside my life and saw it with a more objective eye. What I saw exhausted me.
I have accepted the constant stress and anxiousness and hectic aspects of my everyday life as par for the course. Who wouldn’t expect to be beaten down a little with three kids under the age of five? Children, especially very young children, require constant care. They are needy and want love and attention and games and Mama at all times. It’s a tough job that is unrelenting.
What I was missing, though, is the fact that there is someone who is not being taken care of in this equation. Me.
I don’t expect to coddled or supported, other than the emotional (and occasional housework) support I get from my husband. I am a stay-at-home-mom (sahm), and I feel like I’m constantly having to justify that by being busy every second of every day, as if I weren’t already. I don’t want to be seen as a slacker in pajama pants, even if that’s my go-to uniform.
(They’re comfy and I’m in my own home. If you come over, I’ll put on real pants. Promise.)
My point is, I think I need help. Not help cleaning my house (although a little more effort from my husband wouldn’t hurt). Not help raising my children (hubby does a bang-up job in that department). Not help seeing my own self-worth.
I need help admitting that the day-to-day effort of raising a special needs child, in addition to two quite “normal” children, is a herculean task. It’s hard, and I need to give myself a break before I have to take a time-out.
I have been so ensconced in making sure my children are cared for and loved and nurtured and encouraged that I forgot about me.
That’s a lie. I didn’t forget, I just thought it would be selfish for me to think about myself. I believe that once you have children, they come first. Always. I have no problem taking a back seat to the needs of my children.
But to be frank, autism has worn me out. Autism wants to fight every day. It wants to make mealtimes and bedtimes hard. It wants to be rigid in routine, yet throw seemingly trivial situations into complete chaos in the blink of an eye. Autism wants to wear me down.
My child needs me to be strong and fight back. All of my boys need me to be the calm in the eye of the storm that never really goes away.
So I’m learning to take the moments when I can. Right now, for example, I’m sitting in my quiet house while my husband has the kids out at a playground. I could be baking or catching up on taped shows or exercising or cleaning or any number of things on my endless to-do list, but I’m not. It’s silent in my home. The cacophony will resume soon enough, but in this moment I can almost feel my soul healing. My brain is resting. I’m recharging.
I would really like to go to one of those conventions for special needs moms someday. Until then, I’m going to find my happy place in bits and pieces along the way.
A little bit of happy.
Changes and Progress
Hello again! I’ve been busy working on some changes and updates to the site.
You’ll see a new page, “All Natural,” where I’ve compiled a bunch of links and resources to help you and your family ditch the chemicals in your food. I’ve also added a whole bunch of new items to the store, from all natural candies and cake/cookie decorations, music and books to sensory integration tools and yoga books and dvds for both neurotypical and ASD kids.
I’m working on a humor page, with links to autism and aspie humor. There isn’t a lot out there (yet), but what’s there is pretty wonderful and really funny.
I’m also considering adding a forum, so we can open the discussion wider. Please let me know if you’d be interested in that, and if there’s anything else you’d like to see here.
Most importantly, I have some new stories coming featuring our hero Jack. He’s been a very busy boy.
Enjoy!
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