It has been fifteen years since the diagnosis – the day life changed on June 7, 2005. I pulled this blog out of the archives 5 years ago and it seems a good time to do so again. Hard to believe 15 years have passed, but the memory is as fresh as it ever was. Am grateful for these memories, as they serve to show me how far we have come.
This is a blog entry I wrote in May 2006. The frustration and obstacles still exist for families in Ontario. But at least there is more hope than there once was.
We did it! Our house has been purchased as of Tuesday night and we will soon be the proud owners of a gorgeous home in Calgary. What a long journey this has been. When I think back to the experience of the past year, I cannot believe how far we have come. If you had told me last May that I would be leaving everything and everyone I know in Ontario to move to a new province, just so we could access services for our boys, I would have laughed in your face.
Last May I knew in my gut that something wasn’t ‘right’ with Owen. In fact, I think I knew something wasn’t right when he was 11 months old. There wasn’t the typical gesturing and mimicking that typical children would engage in. He was absolutely indifferent to his surroundings much of the time and had ZERO connection or acknowledgement of his twin. He could spend hours just staring at his twirling, fidgeting fingers. He would push me away at my every opportunity to hug him or cuddle. Grandparents, other family members and friends would come through the front door with a “hey there Owen” and he wouldn’t even give them a glance to acknowledge that they were there. I think back to Owen and Will’s first birthday party and there was NO interest in the wrapping paper or gift boxes. Not even a second was spent with a new toy. The cupcakes with their inviting chocolate icing was barely even tolerated and I remember thinking back to Jake’s 1st birthday party and how alert and involved he was compared to Owen. Hindsight is 20/20 and looking back, I could recite a list as long as my arm of all the things that made me suspicious.
June 7th, 2005 was a day we will never forget. Jonathan and I brought Owen to Grandview Children’s Centre, where he was first assessed by an audiologist. I remember sitting in the little booth with Owen on my lap and the technician was flicking the buttons that would trigger different sounds to burst from Owen’s left, then his right. When he wouldn’t respond to the sounds that I myself could hear, I remember thinking “okay, this is good. He’s just deaf! We can deal with a hearing impairment.” Then the tech asked me to direct Owen’s attention to the little bird decal that was pasted on the wall straight ahead in our line of vision. She wanted to be sure that Owen did not have his head turned in favour of one side over the other. No matter what I did; I pointed to the sticker, I tried to verbally instruct him to look, I physically turned his head to direct his gaze to that little bird and I remember thinking, “Why doesn’t he understand what I’m asking of him. He’s two years old and he doesn’t get it”. I knew he wasn’t deaf. The technician confirmed it.
Next we went into another little room with the speech therapist. She just wanted to try to play with Ow and see how he communicated. He did not even acknowledge her. She took out the bubbles and Owen just let them pop off his nose. No attempts at popping them with his finger or between clapping hands. When she placed the wand in his hand, he just let it fall. He ended up laying on the floor and bawling, with his hands over his ears.
Next we sat with the developmental pediatrician. When her office door closed behind us as we entered the room, we automatically positioned our chairs to block the exit. We knew we were in for a bumpy ride because Owen couldn’t handle being closed up in that little room. Two year olds typically tantrum, but Owen could be relentless when trying to escape a door he doesn’t want to be shut behind. The doctor produced a mass of toys to occupy him while we answered her questions. It was quickly apparent that Owen had no interest in toys. He pushed them to the side like they were brussels sprouts. Nothing would appease him. I think we finally gave him a bottle of milk and he laid on his back with his feet in the air while he guzzled it back. This is what he still does.
The doctor proceeded to ask us her questions:
Does he have any words? –not anymore.
How does he communicate his needs? –he doesn’t.
Does he mimic you when you’re doing things about the house? –no.
What toys does he play with? –none.
What foods does he like? –he is missing entire food groups.
Does he do things to please you? Does he give hugs and kisses? –no and no.
Does he respond to his name? –no.
If you asked him to pick something up from the floor, would he do it? –no.
I started to feel the panic rising as I realized that none of our answers sounded good. She asked us to list anything that we thought might be of concern: he licks bricks. he jumps up and down while flapping his hands all the time. all he does is cry. he curls himself into a little ball and squishes himself in tight places. he climbs the furniture. he used to eat lots of foods, now he only eats about 5 things. he’s obsessed with his hands. he likes to line things up.
“Based on my observations of Owen today and what you both have told me, I think that I can say with certainty, that Owen has Autism. Here’s a checklist of what you need to do. Call this number and get him on the waiting list for IBI. Call this number and get him on the waiting list for speech therapy. Fill out these forms to register Owen as a disabled person for income tax. When he’s three, you might get a diaper grant from Easter Seals. I would strongly suggest you register him for a nursery school programme to get him socialized.”
Shock. I stayed calm. I remember feeling like I was out of my body. Part of me felt relief. Finally, someone believes me that something isn’t right. I wasn’t a paranoid, over-reacting mom for pointing out all that he can’t do. I’m not a failure just because I can’t get my kid to eat carrots or fruit juice, there’s a reason for it. My other part felt like I was drowning. It wasn’t really happening. She could be wrong. We’ll get a second opinion. I looked at Jonathan and couldn’t read him. I looked at Owen and I felt heartsick. I knew she was right. I think I always knew. I heard Jonathan ask her more questions but I can’t remember what they were. I remember being led down a hallway to meet again with the speech therapist. I thought I was going to collapse. I think I did. I couldn’t control my sobbing and I was embarrassed at my outburst. The rest of the day was a blur. Everytime I looked at Owen, I cried.
The week that followed was agony. My emotions were uncontrollable and I suffered through moments of clarity then crashed to absolute despair. I felt so sorry for Owen and imagined every worst case scenario for him. He would never have friends. He would never get married. He would be bullied. He would never let us love him. He may never speak. He would feel alone. Would he someday end up in an institution or group home? I can’t speak for Jonathan’s experience of accepting the news, but I think it was harder for him. I, at least, had believed something was wrong. For me, the diagnosis was a confirmation of my worst fear and I resented that I was right on this one.
Jonathan and I rationalized the diagnosis by saying, “okay. I can see it. This is why Owen does these weird things that Will doesn’t. Owen always has been a pickier eater than Will. Owen is more withdrawn than Will. Owen flaps and Will doesn’t”. At the time, I guess I chose to ignore the fact that Will ate rocks. That he had obsessive behaviours. That he picked every loose thread out of our couch until it had to be thrown out. That he had no words. That he walked around with his hands covering his ears all the time. That he wouldn’t let me hold him. That he didn’t know how to play with toys. Having twins meant that we could use Will as a baseline of “normal” to explain Owen’s autistic “quirks”.
That is why, when we head back to the Children’s Centre on June 14th – one week later – we were not prepared for the devastating news.
“I am convinced that Will has autism”.
It is almost too painful to go back in my head to the weeks that followed. All I can say is that somehow we made it through. Once the realization set in, we went into pure adrenaline mode. I needed to read everything I could on the subject. I made all the necessary phone calls and booked all the necessary appointments for in-take and assessments with various agencies. During that time, our families, our girls- Bronwyn and Emma, and Jenny and Ian were who got us through the emotional pain of it all and we are grateful for them. Once we had a grasp of what we needed to do to move forward, Jonathan did something that I never expected. He wrote an email to everyone we knew. He told everyone about the diagnosis that we had received and he made a plea for anyone who had any resources or contacts to please pass them to us. That action of exposing our personal pain to everyone, is what helped us the most. A huge lesson was learned. When you allow yourself to be vulnerable and you ask for help, the world helps you out.
From our church, our fairy godmother, Beth, stepped forward and opened up possibilities for us that we didn’t know existed. We enrolled the boys in a nursery school with Beth’s help, which was housed in our own church. Jonathan attended his annual high-school rugby alumni game and his former coaches, Red, Jake and Rod, made a collection for the boys. It blew us away that people could be so generous and it provided us with the suggestion that fundraising might be an option to access the services that the boys needed.
We soon learned that once you receive a diagnosis for Autism, there are no doctors to set you up with follow-up appointments to tell you where to go next. There’s a sense of urgency, a time-bomb is ticking away because the experts tell you that there is hope for your child if you can intervene with therapies during the critical time period between ages 2 to 6. Our developmental pediatrician offered that if we found them some help, maybe the boys could eventually be integrated into a classroom setting with their same-aged peers.
The urgency is there, but the services are not. Every phone call that I made, and I can say that I made hundreds in those first few months, reinforced the reality that no treatment would be available for the boys. We would have to wait. Talking with other parents going through the same thing, we learned that some had been waiting for YEARS for service, only to reach the age of 6 and be kicked off the waiting list because that was the cut-off in Ontario.
We were approached by our friends, Ian & Jenny, Andrew & Patty and learned that they had started plans to hold a fundraiser for our family to happen in September at the Farm. It would be a Pig Roast & BBQ. Maybe it would raise a thousand or two to help fund some of the therapy costs. Never in our wildest dreams could we imagine that hundreds of people would show up and we would raise over $15,000!! We were able to commit the boys to a therapy programme that would take us into the Christmas holidays. The “Willowjak” name was formed and several fundraising efforts followed. Dances, rummage sales, Emily’s Beading Buddies, an Autism Awareness event at the Farm, collections at our church. Virtual strangers called us up with donations and offers to put together their own fundraiser for the boys. It was overwhelming and it has forever reinforced our opinion that humanity and kindess do exist and that small-town communities are full of good-hearted people.
In January, we switched therapy agencies for the boys. We now had a bill that loomed at the beginning of every month that was over $7000 for 20 hours of therapy a week. This did not include what we paid for respite care in the form of Diane, who had become the heart of our “team” that would help bring Owen and Will out of their shells and into a world of learning, socializing and communicating. It was worth every penny.
The change in both of the boys was astounding. Owen has come alive and participates in play and sing-songs. Will has learned how to play with toys appropriately and shows an interest in interacting with his peers and Jake. Both boys have acquired so many skills in their therapy and can put together a puzzle, hang up their own jackets, respond to their names and some verbal requests.
Now that we knew that what we were doing was working, we were realizing that we couldn’t afford to keep it up. Looking into the future, how could we afford to maintain this way of life? At home, we were bursting at the seams in our tiny house. We lived in chaos and the twins’ shared bedroom situation was becoming a nightmare. Our ongoing efforts to organize fundraising events was killing us and putting a strain on our relationships with friends and family. We wanted to increase the hours of therapy to 40 a week for each of the boys, as suggested, but how could we do that at a price of $160,000 a year, then with respite on top of it! How is it possible?? How could we even put any other money aside for Jake’s future? How could we have any semblance of a normal family life if every second was devoted to autism, to fundraising, to therapy..
I can’t express how helpless it makes you feel as a parent to know that you can’t provide for your children. We are the rabbits and there is a dangling carrot hanging in front of our faces in the form of a therapy that we know is working to improve the life of our boys, but we can’t reach it. We get little nibbles on the carrot, but it doesn’t satisfy the appetite because we know the carrot has to continue to feed us for the next decade or so.
We know that we have done the best that we can in Ontario. We have fought. We have begged for help. We have exhausted our resources. We have advocated at Queen’s Park and Parliament Hill. We have put our story out in the media and spent money on purchasing Autism Awareness items that we have handed out for free, just to spread the word in the hopes of garnering some interest in the issue. We have done all we can and it’s not enough. It could have been so easy to despair and give up. Just to accept the life that was dealt to us. We could learn to cope. We could learn to accept the fact that the boys might never get to go to a normal school or have a normal job or a normal opportunity at a normal life. But I think that God chose Jonathan and I to be Will, Owen and Jake’s parents because He knew that we would do everything in our power to provide them with every opportunity to live to their fullest potential.
It has come in the form of a province that sits on the other side of the country. One where I only knew ONE family. A three day’s drive from the home that we have lived in our whole lives. Away from the family and friends who have supported us and formed a community that we could safely raise our boys in, with the knowledge that they are loved and watched over by more than just their parents. We are Alberta-bound and we are excited to start this new chapter in our life. We know we’ll be okay. We believe that the boys’ needs will be provided for. We will form new friendships and we will keep ties with the friends and family we leave behind. We will be happy. Most importantly, we will do our best to show our thanks to everyone who has ever supported us, by living a full life and never taking one day of it for granted. We will celebrate each one of our boys’ achievements. Be it Jake’s new drawings or the words he has learned to spell, or Owen’s new signing of the word “music”, or Will’s learning to sit in a chair when watching tv without tantruming. We will continue to advocate for the families who are left behind in Ontario. Those who do not have the means, the where-with-all to pick up and move so far away. Those who do not have the strength to fight or the funds to provide their children with therapy. We will work to promote autism awareness and inclusion in our schools, our churches and our communities. We will show our thanks by just enjoying being a family. By walking each night after dinner and enjoying each other’s company. We will form a new life in Calgary and our door will always be open to everyone who has ever entered our lives in Ontario.
I started writing this post to simply relay our happiness in finding a new home. But it’s more than just a house. It’s a symbol of how far we have come in a year and it represents the hope we have for our future. We are about to start a new life and we will miss everyone who has been a part of the life we had until now. From every one of us and from the bottom of our hearts, thank you.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.