Monday, 27 April 2015

Autism...Three Years Later

Two years ago, PG spearheaded some autism fundraising in Montreal. He is doing it again. On May 9, the Captain of the Buffalo Sabres, Brian Gionta, will be at PG’s office at 318 Ridge Rd. in Ridgeway, Ont. He will sign autographs from 11 am to 1 pm, for everyone who provides a donation toward autism programming at Bethesda. 

Please come out to support this initiative and feel free to share this blog to spread the word. :)

Wow. It has been two years since I last wrote about autism and our family. Time really does fly. At that time, we were one year into Leo’s diagnosis of being on the spectrum and finding our way through any challenges. We lived in Quebec and had a great support system in place.

Two years ago, around this time, PG and I were fundraising for Autism Speaks, doing our part to help promote autism research, awareness and compassion. Soon after the Montreal walk, where we helped raise just under $10,000, PG’s contract was not renewed with the Canadiens and it took us exactly six days to pack up the house we were renting and leave Quebec.

Our destination was our cottage in the sleepy beach town of Crystal Beach, Ont. Moving provinces can be tricky. Everything from our vehicle registrations, to our health cards to our driver’s licenses had to be changed. But understanding how the new province helps children on the spectrum proved especially difficult.

Eventually, I found my way, thanks in part to another parent at my kids’ school, who also has an autistic son and had already woven her way through the system. First we had to go through an organization called Contact Niagara, which acts as a central referral access point, for those 18 and under in the region who have emotional, behavioural and/or developmental concerns.

After going through the process with Contact Niagara, we were referred to Bethesda, an organization that provides a variety of services for children and youth who are on the autism spectrum.

In Quebec, Leo was due to start 10 hours a week of therapy at the preschool he was set to attend in September. In Ontario, we found things work differently. Leo would not qualify for the 10 hours of therapy a week here. This was only for kids at a very different place on the spectrum than Leo. 

I was frustrated. I felt like Leo was not autistic enough to get any help, but we still had challenges that we faced. Begrudgingly, I agreed to have his name put on the waiting lists for the things he did qualify for at Bethesda.

Then something amazing happened…Leo started school. He started junior kindergarten in the fall of 2013. PG and I were worried. Would this make his aggressiveness with other kids worse? Would this improve his communication skills or set him back? How would having his Daddy living in Europe three quarters of the time effect him during his first school year?

So many questions. But I dropped the twins off at their tiny school, with their backpacks dwarfing them on that first day, and hoped for the best.

Leo and Eli on their first day of junior kindergarten.

What we got was better than we ever hoped for. I am not going to totally sugar coat it…sure there were plenty of times when Leo got “hands on” at school. Still does from time to time. Initially, he could not make it through a school assembly. Too loud. Too many people. Too hard to focus. And I did get quickly acquainted with the school principal, constantly trying to ensure that Leo was getting the support that he needed.

There was one day when I found out that Leo’s EA (educational assistant) had been changed without my knowledge and I was walking, rather heatedly, toward the principal’s office. When I got within 10 feet of the office, the fire alarm rang. I still joke with PG that the principal must have been watching a video of me walking towards his office and pulled the alarm. 

Over time, the development we saw in Leo (as well as his gorgeous twin brother) blew our minds. His communication improved so much that by the time his name came up on the wait list and he was evaluated by a speech therapist that spring, he no longer needed any speech therapy. He developed a great interest in art and music through that school year.

Our hearts soared with pride when he was named Student of the Month. He loves learning. He loves friends. He loves using his imagination. School was one of the best things that ever happened to Leo. Part of me thinks Leo would have done well at whatever school he was at. But another part of me knows that this particular school experience was perfect for him.

So proud of this mini! Leo was Student of the Month in his third month of school.

The twins go to a school, in a tight-knit community, that has a little more than 100 students. They are lucky enough to have three amazing women in their classroom with them for the past two years — a wonderful teacher and an ECE, and an EA who is always there to help Leo. The principal has been fantastic and we find that all of the teachers in the school know our sons by name...which is amazing.

During his first year of school, he would start his day by doing his “exercises” with his EA, things like walking like a crab and superman stretches, little techniques that would help him get his “beans” out and keep his hands to himself. In the early days, Leo would often have a weighted cat that would sit on his lap, or over his shoulders, at assemblies to help him get through. He no longer needs this.

Just after the twins’ started their senior kindergarten year, I got a call from Bethesda. Leo had reached the top of the list for one of the services for which he qualified. It was for respite services.

I took down the information but I already knew how I felt about it. I was all set to turn down the service. I didn’t need a respite from my child…that’s how I felt. I talked to PG about it and he felt the same way. No breaks needed for us. So I emailed my contact at Bethesda and told her that I thought there were other families that likely needed the spot more than us. 

The interesting thing about this was the timing. We had just had a visit from some family from out of town. We found that when family who don't get to see the twins often visit, a whole lot of attention is placed on the child who is on the spectrum. PG and I understand this. In so many situations, Leo has required additional attention. It is natural to want to focus this attention on him. But it often results in a twin who feels left out. And that sucks.

Eli is often the one who has to sacrifice or give in to his brother on the spectrum, just to calm a situation. He is often treated as the older, wiser child who is expected to behave a certain way to appease his younger, more demanding brother. Younger by one minute. It is not right. I know that is Eli’s reality, and is helping to shape him into the sweet, caring, helpful and sensitive young boy he is. But some days it doesn’t feel fair to me. That is how I had been feeling when I got the call from Bethesda.

Within half an hour of sending that email turning down the service, I got a call back from my contact. She took the time to call me and explain a few things. “Do you have any other children?” she asked. Yes. She said that this respite playgroup time, which was a few hours on Saturday mornings, for four weeks, was designed to allow parents time to focus on the other child. It wasn’t to be looked at as “needing a break” from your child on the spectrum. But instead, it was time where you know he is in an environment where he is developing his social skills, under the care of people who understand autism and his behaviour, while me and PG can focus on Eli.

My eyes welled up with tears as she spoke. Focus on Eli. Well-deserved and much-needed focus on Eli. I was so impressed by Bethesda that day. They could have very easily just accepted my email and taken Leo’s name off the list. Instead, they took the time to make a call to me. They took the time to explain what the respite service was all about. By the end of the conversation, Leo was all signed up for his first service from Bethesda. 

It was a fantastic experience. Leo loved his Saturday morning “Befesda” play groups and he still asks when he can go back. As for Eli, it was amazing to spend that time with him. We did a variety of activities with him, including taking him up the Skylon Tower and to an indoor water park. He loved the attention from Mommy and Daddy and Leo loved his playgroup. And to think I nearly turned the service down.

Around the same time, I got notification from Bethesda that I qualified to attend their Triple P parenting course. It was Thursday mornings for a couple of months. I agreed. At this point, I was not going to turn down any service they provided.

It was an excellent course. If anyone ever gets a chance to take a Triple P parenting course, I advise you to take it. It helped me as much with my typical child as it did with my child on the spectrum. It is so interesting when you take the time to fully examine the function of your child’s behaviour that you would like to change. Many times, their behaviour can be changed when you make a point to change the way you react to a situation or alter your own behaviour. Like I said, it would be positive for any parent. It should be a parenting prerequisite.

One of Leo’s biggest challenges right now is his inclination to hug. Any child. Anywhere. That sweet little girl in his class…hugs her. The little sister of a boy at swim lessons…calls her “cute as a button” and hugs her. It is something that he can get away with now because he is 6 and charming. But what about when he is 10? Or 16? Or 25? 

It is a behaviour we recognize that we need to change. The people running the Triple P Parenting workshop helped me create a game for Leo that involve putting people he knows in different “circles” that symbolize what kind of contact he can have with them.

For example, his family are in the green circle and he can feel free to give full-on hugs when ever he so desires. His classmates and his teachers are in the yellow circle, where he is encouraged to give high-fives instead of hugs. And then strangers are in the red…no contact, dude. No contact. It has been a helpful tool in dealing with Mr. Hugs-a-Lot.

In addition, the other parents who attended the course all exchanged numbers. It is such a relief when you have other parents who understand your specific challenges. It is great to build a network like that full of people you can turn to when you are facing a specific dilemma.

Those have been the two experiences with Bethesda we have had up-to-date, although I just got a call last week from Bethesda and we are about to qualify for another service. Leo is in amazing place right now. He is such a charming, hilarious and bright little boy. When I go back and read my initial blog about him being diagnosed on the spectrum, I am taken back by how far he has come in such a short amount of time.

Leo dancing to music at a parade...something he could not have done just a year or two earlier.

While I was discouraged when I first moved to Ontario and found that the system was different from Quebec, I have come to immensely appreciate the services provided by Bethesda and to understand how they are beneficial to my family.

Once again, I will say that PG and I know our situation is not the same as other families who have a child on the spectrum. The spectrum is so vast and we know others face so many more challenges than we do.

Speaking of challenges, this past year has been a challenging one for our family. It has been full of many changes and lots of questions. We are so grateful that autism and its challenges, have played such a minor role in our lives this year. And we are thankful for the services we have received from Bethesda.

We want to give back to Bethesda and help them in providing their services to all of the families in the Niagara region. That is why PG has arranged a fundraiser at his office in Ridgeway.

On May 9th, PG has asked his friend, Brian Gionta, to come to the office and sign autographs and meet anyone who provides a donation toward the autism programming at Bethesda. We thank Brian for taking the time to do this, and we hope to see our community come out to help us support the services provided to those families who face autism challenges.