Sunday, April 22, 2012

fundraiser for mateo - autism from a mother's perspective.

Max at his 2nd birthday party (a week before his sister Cameron came into the world and changed his life forever)
This afternoon I had the opportunity to speak at a fundraiser for a little boy named Mateo who was recently diagnosed with autism. As much as I hate "welcoming" new families into the autism community (wouldn't wish it on anyone except our PM, Stephen Harper), it felt important to share Max's story with Matteo's parents and their friends and family. While it has been over three years since Max received his diagnosis, those raw, overwhelming feelings of initial shock and sadness are still easily accessible. I found myself transported back in time, and felt blessed to truly be able to speak from a place of empathy for this family.

Autism from a mother’s perspective.

My son Max, who is turning 6 years old tomorrow, has autism. He was diagnosed at the age of 32 months, but our journey into autism actually started at the age of 14 months when we really started to take notice that Max was not hitting milestones that one would expect. He didn’t respond to his name, or wave goodbye. He didn’t point and most upsetting, he had no words, just a stream of babbling “dadadadada”. Because he was our first child, our doctor told us to relax and brushed our concerns off as those of nervous first time parents.

Max continued to stall and miss milestone after milestone. He had problems sleeping, got terribly upset at the smallest transition. It was only at his 2 and a half year check up, when he sat on the doctor’s examining table and repeatedly banged his head on the wall for the entire appointment, that my concerns were taken seriously. 2 months later we had a diagnosis.
I have documented our journey with Max since the day he was born on my website, ficklefeline.ca. The hardest post I have ever written was on the day we finally had our biggest fear confirmed, that Max has autism. I was unable to speak about it, so instead I wrote about it.

...

And that has been my attitude ever since. We immediately started Max in IBI therapy. He also had Occupational therapy to address his sensory needs, Speech and Music therapy to work towards helping him learn how to speak. Anything that we could do to help him, we did. And it was expensive. The first year of Max’s therapy cost over $50,000. Each year that cost has increased as his therapy has become more focussed and intensive. This year it topped $70,000. We have remortgaged our home, maxed out credit lines and credit cards and relied heavily on the generosity of our families. Funding for autism is in high demand and we waited two and a half years on the ErinOak waitlist before Max was picked up. This funding only covers half of the cost, but it does provide some relief.

I am outlining the costs up front to help you understand what it takes to provide a child with autism the therapy he will need to be truly successful. It is mandatory that this therapy be provided as early as possibly and intensively. My attitude has always been the more therapy the better. Max receives treatment 7 days a week. We don’t take breaks from therapy during holidays - if anything, we snap up extra hours. And it has paid off.

When Max started therapy, he was unable to make eye contact, speak, imitate, follow simple instructions, or play with toys appropriately. He had to wear a helmet on the playground because he would get so upset during transitions in and outside that he would throw himself on the cement ground and bang his head. It took him six months of treatment to “learn how to learn”, and by that I mean, to be able to sit and pay attention long enough to complete a simple activity or task.

Our home was chaos. Sleep was scarce, I had gone back to work full-time after being off on mat leave with our daughter, and it became clear that having both parents working full-time in downtown Toronto was not going to work. There are only so many times you can tell your boss you have to leave work because your son is throwing a tantrum and is inconsolable. Something had to give.

So, I left my full-time job and started working part-time from home. Days are filled with daycare drop-offs, therapy, consultations, meetings about Max, and trying to hold it all together. I realized that if I was truly going to get Max everything he needed to be as successful as he can be, I needed to make that my number one focus. And it has been worth it. Max’s progress continued. I call it the “two steps forward one step back dance of autism”. Little wins, little setbacks, add them all up and you hit huge home runs - like the first time Max said “Momma” on August 20, 2009 after participating in 2 weeks of a Music and Speech therapy camp. We actually celebrate August 20th every year just like it’s a birthday.

Luckily, it is the wins that rise to the top of your memory bank. I keep a bottle of champagne chilled and ready to go at all times. You have to, because the hard days, they are also plentiful and will break you if you don’t celebrate when your child uses a spoon or fork for the first time, hums a song from daycare, looks at you when you say his name, and the ultimate party time, successfully uses the toilet. By the way, we have been working on toileting for 3 years now, and we are still not completely there. I recommend on stocking up on wine when you start toilet training, because that is one of the toughest battles we have fought. But I know that it isn’t a matter of if Max will successfully meet a milestone, it’s only a matter of when. That’s the way you have to approach it. Patience, a sense of humor, and all of the love in your heart. My mentor, the late Kim Pace, told me “Katrina, if you believe in Max, that he can do anything, then that is the truth, that is what will happen”. And I have stood by that advice to this day.

When we fast forward to where Max is today, he is integrated in Senior Kindergarten and attends school in the mornings with a dedicated Educational Assistent. He is the best reader in his class, participates in morning circle, has a favourite girlfriend “Maggie”, requests for his sister Cammie to come play with him at home, is taking gymnastics, and will not only happily tell you what he wants and doesn’t want, but has recently started telling us what he feels with phrases like “Max is sad”, “tummy hurt”, and “I love you”. He is also my grocery shopping buddy and we have a standing weekly lunch date at the local burrito place.

Two things I stand by when it comes to Max are that it is my job as his mom to help him learn how to share his light with the world and that we will all be attending his university graduation.

This deep belief gets me through. That and a tonne of support from my family and friends and the smile of my son. It is the hardest and most rewarding journey of my life. Being Max’s mom has taught me more in the last 6 years than the 30 years combined before I had him. He has changed me profoundly and made me a stronger, more patient and more loving person. I could not have done this alone though. Just as Max counts on me, I count on the support of my friends, family, autism community and Max’s therapists and teachers. My number one advice to parents of children with autism is to make sure you ask for help, people want to help, they just don’t always know what you need. And friends and family, if your offer of help is turned down, ignore that and come over with a bottle of wine and do some dishes or fold some laundry. And buy some raffle tickets! This therapy doesn’t pay for itself!

4 comments:

  1. Nicolette Cullen7:17 PM

    I am honoured to have met you and heard your story! thanks so much for coming out to our event for Mateo and for sharing your story so freely and lovingly! My world is changed because of Mateo, your journey and all the new information I have learned about Autism! THANK YOU!

    ReplyDelete
  2. Nicolette - it was my pleasure to share Max's story yesterday. Mateo is a lucky little guy to have so many people in his corner and I looked forward to all of his progress :-)

    ReplyDelete
  3. Hi Kat, I was trully impressed reading your story, I got your website throught the workshop and Erinoak, and I feel like you speak for myself in your story as well. To find down that Iam not alone really relief but......Im still nothing compare with you or what you have done to Max...I wish I could do more thing for my son earlier, but have to comfor myself that never too late........wish you , Max and your family all the best, I will email you with ton of questions later. Happy 6th birthday to Max!

    ReplyDelete
  4. Karen K11:05 PM

    Kat, thanks for being so sharing and open. I look forward to reading about how Max and your family is doing. It's wonderful how much progress Max has made!! I have this strong belief that he will not only graduate from university but, will lead a happy life and find someone special he will share his life with. He's an amazing boy that will go far in life, especially with amazing parents like both of you.

    ReplyDelete