Saturday, May 27, 2006

Queen's Park Press Conference Speech

What a day it was yesterday. Never did I think that doing someone a little favour could have turned into something so big!

I sent an email to Andrew Kavchuk, (www.canadaautism.com) who is the amazing gentleman who protests on Parliament Hill on his lunch hours and coordinates many rallies, press releases, etc. for the autism 'issue', saying thank you for all of his efforts and letting him know that we would be moving to Alberta. He replied immediately with a request that we bring our story to the media in an effort to bring more awareness to what is happening to Ontario families in their plight to get better service for their children who have autism. I seriously debated whether or not I was willing. This is not exactly a time in our lives where we can spare even an hour to devote to something like this. But after talking it over with many people, Jonathan and I both agreed that everything we have worked for in the past year would be for nothing if we couldn't do this one last thing on behalf of the boys. I admit that it is a very rewarding experience to know that we now say that we aren't just moaning and bitching from our couch about the politics of our country, we are actually trying to do something about it.

Julie Lavertue, who works with MPP Shelley Martel, contacted me to ask if we could participate in a press conference that would be held at Queen's Park. We said yes and it then meant that I had to write a speech that was only supposed to be 3 to 5 minutes long. It turned into this: (pardon any grammatical errors, it was written between midnight and 4am)

If you knew my life, you could appreciate how difficult it is for me to be doing something like this. The average day in my household is pure and utter chaos, where every moment is scheduled and there isn’t a second to spare. I have three boys under the age of five and my twin three year old sons both have autism. We are weeks away from a move across country and as you can imagine, there are a million things to do to prepare for it. The decision to tell our story was a pretty simple one however. This is the last gift we can give on behalf of our boys, in the hopes that when it’s decision making time in Ontario, when it comes to deciding on how to handle the ‘autism crisis’ in this province, someone might remember our family’s story and they will make decisions that will not force any other families to have to make the heartbreaking decision that we had to.

If someone had told me a year ago that I would find myself here today, I would have never believed it. Two years ago we were just a regular family of five. We struggled on a single income, my husband is a school teacher and I was unable to return to work from my maternity leave because my twins just weren’t “daycare material”. They were very fussy, they had funny quirks that none of us understood, they weren’t developing the way that their same-age peers were and they weren’t seeming to develop any speech, in fact, their only form of communication was to scream and cry. Neither of the boys were really connecting with anyone, they wouldn’t cuddle or even make eye contact with anyone. We have hundreds of toys and they wanted nothing to do with them. Will could spend hours and hours pulling loose threads out of our couches and Owen would be in his own little world, scrunched up in a ball, trying to squeeze himself into any crevice or small space he could find. They seemed to feel no pain and they had no sense of danger. The only activity that seemed to bring them any joy would be to jump and flap or obsess over opening and closing doors over and over again.

After voicing my concerns to our family doctor, we waited months before getting picked up for assessment at the Grandview Children’s Centre. On June 7th, 2005, Owen was diagnosed with Autism. If you are a parent, you can perhaps understand the anguish we felt at learning that our son would have to struggle with this complex disorder. There really are no words to describe how that news turned our world and our dreams upside down. One week later, we received the same diagnosis for Will.

Upon receiving the diagnosis, we were given a checklist of sorts by our developmental pediatrician. Number one on the list was to contact Kinark to get on the waiting list for IBI. It was explained to us that IBI therapies was critical for our children to have a chance to overcome some of their challenges. We were told that we were ‘lucky’ in some ways because we had received a diagnosis so early, because between the ages of two and six, it is the optimum time for a child to ‘rewire’ the brain so that he may learn how to learn, to socialize, to play, to communicate, etc. We were told that with hope and with therapy, maybe the boys might someday be able to go to school with their peers. We left the assessment feeling devastated, but still hopeful that there were treatments out there that might help.

We immediately started to research all that we could about Autism. It didn’t take a scholar to realize that IBI was what we needed for the boys and we needed it now if they had any chance at ever catching up to their peers. But when I started making the calls to all of the agencies that I was referred to for services, I soon understood that it wouldn’t be so easy. For IBI, we were put on a waiting list for in-take, then a waiting list for assessment to even get the boys ON TO the waiting list for service, and here we sit on the waiting list now. No closer to accessing the services the boys require. I won’t get into the how’s and why’s of funding in Ontario or the breakdown of costs or what determines a child’s ranking on the list. I’ll leave that to people like Bruce MacIntosh, who has put in the hard work to understand the system so he can advocate on behalf of all of us other families who don’t have the energy. All I can tell you is how it has affected my family and how it has FAILED my boys.

People assume that when you get a diagnosis for something by a medical professional, naturally, you will be given a prescription of sorts or instructions on how you will proceed with treatment. In our experience, being a parent of children diagnosed is a very helpless and lonely experience, especially in those early months. Not only are you grieving the loss of a future you thought your children would have, but you are blindly left to figure out on your own, where to turn to access the services to help your children. Last June we understood that even IF our boys would ever get funded IBI, they would only receive it until the age of 6. I have met many parents of children who have autism at the many protests and rallies that I have participated in and I can’t count how many told me that their children never saw the day that IBI was provided to their children, because they were kicked off the list after turning six years old.

It has never been an option to my husband and I that we would just sit around and wait with crossed fingers, for our boys to get picked up. They are beautiful boys with obvious intelligence. It seemed to us that they just needed some help to remove the veil that separated them from connecting with everyone around them. We weren’t going to sit and watch our boys become more and more withdrawn, more and more frustrated and angry because they couldn’t communicate, more and more lost to us. This not only hurt us as parents, but it hurt our older son, Jake, as well. How do you answer a four year old when he asks you why his brothers don’t love him because they won’t let him hug them? He wonders why his brothers don’t talk like other little brothers do and he wonders why his life has to revolve around the needs of two very difficult little boys. Jake’s life will never be an easy one either. For our whole family, we knew that we had to do whatever was within our power to provide Owen and Will with every opportunity to succeed in life. Just as we would with Jake.

Against all instinct, our reaction was to open ourselves up and make our very private pain, very public. We told all of our friends and family what we were up against and we asked for help. The response was tremendous. Our community of Bowmanville, our church, our friends, co-workers and especially our family, rallied behind us. We created the name “Willowjak”, combining the names of all three of our boys. We created something called a “Circle of Support”, bringing together key people who wanted to commit to supporting us long-term. These people became our life preservers. Brainstorming led to fundraisers. We planned an event for nearly every month, from dances, to silent auctions, selling homemade jewelry, holding rummage sales, canvassing, having raffles… The compassion of strangers and friends alike kept us motivated to continue on. Anonymous donors, business owners, the Rotary Club, our church congregation – they all stepped forward and financially and emotionally supported us. We set up a website http://www.willowjak.com/ and we tried to provide some information about autism to inform people of what they were contributing to. Through fundraising, we saw that we were becoming advocates for the autism community. We spent hundreds of dollars on autism awareness items (car magnets, bracelets and t-shirts) and we handed them out, thinking that the more awareness we could raise, the more it would help our efforts. We started attending rallies and protests at Parliament Hill and Queen’s Park. We were very successful for six months and the money that we raised allowed us to put the boys into 20 hours a week of therapy and their enrolment into a nursery school program.

We immediately saw a change in the boys. Over the months that followed and hours and hours of repetitive teaching, the boys acquired simple skills that most people would take for granted. They learned to pull up their own pants, they learned to use our hands to guide us to what they wanted, instead of just screaming in frustration, they started to make eye contact with people if even but for a brief moment. All of this came at a price. The private therapy cost $7000 a month. Add the cost of supplies and therapeutic equipment, then the cost of respite care and it totaled $7500. As suggested by professionals, we really wanted to increase the hours of therapy to 40 a week, but there is no way we could afford a price tag of $15000 a month. The other cost was what it was doing to us.

The toll that fundraising takes on you is harsh. It’s a full-time job. It’s time away from being a “normal” family. It’s hours on the phone. It’s hours of begging and pleading. It starts to wear on your relationships with friends and family. People start to avoid your calls because they only anticipate your request for them to buy a ticket to another event. It’s sometimes humiliating, always humbling and something that no family should have to do. We did it because we had to. And we did it because our boys deserve it. And we did it because no one else would do it for us.

At the end of the day, when my husband and I would sit and try to take stock of where we were and where we were going, there was nothing but panic and fear in our future. Because we knew that fundraising was not sustainable. You can only ask so much of your community. We weren’t looking for a temporary solution either. We were looking at the need for funding for many years to come. No matter what we do for our boys, it would either cost us now in the form of IBI, or it would STILL cost us twenty years from now, in having to support two grown men who could not support themselves. This is not a temporary challenge. It’s one that we will have to face every day of our boys’ lives. It’s enough that we have to deal with the difficulties of our daily life, but it’s an absolute slap in the face to know that the province I love, Ontario, has failed us. Has failed our boys.

I saw a news story in February about a family that moved from Saskatchewan to Alberta, to access superior care and treatment for their autistic son. I booked a flight out to Calgary within the week to investigate it for myself and I knew within my first day out there that it was the ONLY decision that would be right for my family. I met with many families who had also made the move to Alberta from another family and it was unanimous: it might sound too good to be true, but it really was as good as it sounded. There is still obviously an assessment process, but the approach appears to be quite different than in Ontario. In Ontario, they seem to ask “how severe is your child’s disability?” and they determine your level of need based on that assessment. In Alberta, they ask “how does this disability affect your family?” They look at the big picture. And what a breath of fresh air that is. Waiting lists are minimal; a couple of months, maybe a bit more, just to get through the assessments and hiring of staff. IBI funding goes to the age of 18. Some families may even be granted respite funding. Nursery school is paid for with proper aides for special needs children.

It was a no-brainer. It’s not a question of should we go. It’s when do we go. As we all know, Calgary’s housing market is booming and the average selling price of a home is nearly triple the cost of our current one. But again, we’re in debt with no hope in Ontario, we would rather be in mortgage debt but with service in Alberta.

I am not at all pretending that this is not heart-wrenching for us. It is the biggest sacrifice we will ever have to make for our kids. My husband and I have lived in Ontario all of our lives. The community, the friends, the family members, all of our support that we have built around the boys will be left behind. We don’t know anyone in Calgary except for the people that we have met because of this decision. We are leaving grandparents, aunts and uncles, best friends, ill relatives.. all behind. My oldest son Jake has probably had the hardest time understanding why we have to leave. He realizes that he will no longer get his sleepovers at Granny’s or his special dates with his Auntie. He doesn’t understand why he won’t be able to have playdates with his Junior Kindergarten playmates. We know that Jake will adjust. And we know that we might finally be able to live a “normal” life, or at least as normal as it could be when you live with autism. But it will be a life without fundraising. Without fear of not knowing from one year to the next if the funding situation will change.

I "winged" the conclusion. Not sure what I said. I was too busy getting all teary-eyed like an idiot to remember much.

Julie and Shelley were soooo kind. I was very nervous and they both put me at ease. Mom came along to offer her support and she handed out Ellen Notbahm's "Ten Things Every Child With Autism Wishes You Knew" to all of the press. I felt that the press conference went really well, even though I didn't have any others to compare it with. Bruce McIntosh did a wonderful job, as did Shelley and they conferenced in Deborah Campbell, who is a parent who moved out to Alberta last year for the same reasons we will be. I think I made a connection with many of the newspeople and even saw many of them tear up from our story.

Immediately following the conference, we were each individually asked to participate in interviews for CBC, CTV, Global, CITY-TV and CBC Radio (French). After getting through the press conference, I wasn't nervous about doing the interviews but I was more terrified at the thought that Global and CTV wanted to meet me back at the house to do the interview there --- our house was such a mess!!! Fortunately, Diane had the boys at the house and she also ended up getting her 10 seconds of fame on Global's coverage. She was great.

I am proud that we did this. It has definitely given me a sense of closure to know that we have really done the best that we could in the short time that we have lived with this new journey that we are on. I have been feeling so guilty, as if we were 'bailing out' on all of the other families who have children with autism in Ontario, as if we were taking the easy way out. I hope that they see that we are just doing our best and I hope that they see that we have done our best to do something that is bigger than us, to help the other families who, for whatever reason, aren't able to be so public with their own stories. The feedback from the autism community has been tremendous and the stories were aired across the country.

Hopefully Mr. McGuinty took a moment to absorb the pain from the black eye he suffered yesterday. I can guarantee that his pain doesn't even compare to that of the families of Ontario, whose mere existence he seems to be denying...

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