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, who is a newly practicing realtor in the area (part of those major changes I spoke of!), has arranged a fundraiser at his Royal Lepage 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.

video


Here is a video of Leo doing his "bum dance" for your viewing pleasure.


Friday, 29 March 2013

Leo the Lion and Our First Year Living With Autism


With World Autism Awareness Day approaching on April 2, and Montreal’s Walk Now with Autism Speaks coming up on May 26, I thought it was time to write a follow-up blog entry about Leo and autism. And to ask you for money (keep reading). :)

A lot has happened since I wrote about Leo being diagnosed with Autism Spectrum Disorder 14 months ago. Hurdles have been leaped and new challenges have appeared. But, above all, the last year has shown me that there is nothing Leo can’t do.  

First, let me tell you about birthday parties. Leo and his twin brother Eli, just celebrated their 4th birthday in March. They had never had a birthday party. It sounds terrible when I type it. I know I sound like an evil mother who has denied her children a basic right of childhood. But it was scary. Scary for us to put Leo in that position. And scary for P and I to put ourselves in that position. I had always been too nervous about Leo’s unpredictable behaviour when in a noisy, full-of-kids environment. But the decision to skip parties meant that Eli also missed out on birthday parties. Which just sucks. A lot.

We took them to their first birthday party in November. We left after an hour and a half...before cake was served, but just before Leo was about to have a major meltdown. It was a major step for us. And major wine was drank that night.

Since learning of and completely accepting Leo’s autism diagnosis, Pierre and I have spent the past year learning about autism on a daily basis. I never stop researching, reading and “Googling” after the kids go to bed. Leo (and Pierre and I) receive help from his government-appointed therapist Sarah-Ève, and we found the right person to work with Leo privately (we love you, Christina!) All of this work by Leo, Sarah-Ève and Christina, and Pierre and I, has paid off for us, with Leo growing up so much and learning how to handle different situations and us learning how to teach, talk to and give a high-functioning autistic child what he needs to thrive.

I am delighted and proud, and a little bit choked up, to say that Leo and Eli just had their very first birthday party last weekend. It was a big, big deal for our family. We had 8 kids in total and had the party on a pirate ship in a pet store. The kids got to hold and pet animals and the twins had the best time. Eli will tell you the best part was the presents. Leo will tell you the best part was the cake. :) Yep...we made it to the cake this time.





He had to take a few breaks from the group when things got too loud and hard for him to handle. Despite a run-in with a squawking parrot, Leo was a champ and made it through. We couldn’t have been prouder. And we couldn’t have been more exhausted when it was over. Bring on the wine. 

I know it may seem like a small thing to people who have typical children - having a birthday party for your child. For us, it was huge. It felt like we had overcome a huge hurdle and I can’t even tell you how amazing it makes me feel to hear Leo talking about his party and how “awesome” it was.

Now I am going to tell you about potty training. Shit. It was bad. A year ago at this time, I was reading so much information on potty training autistic children...things like children still in diapers at 12-years-old. In the beginning of working with Leo, I am not going to lie, I definitely feared the worst. There was one time, at our cottage in the summer, that I had Leo sitting on the potty for two hours. TWO HOURS. I had given him drink after drink, put a movie on for him on a portable DVD player, sat on the ground next to him, and was determined that this was going to be the time that I got a drop of pee out of him, into the potty. After the two hour mark, the phone rang. I got up to answer it (a huge mistake) and when I turned back around, he had stood up and peed all over the floor. I told him it was okay (although he wasn’t really that upset about it). I went into the laundry room, closed the door, and cried my eyes out. 

It seems ridiculous to type that now.  That it was pee on the floor that broke me. But it did that day. It broke me. After that, I gave up for a bit, for sanity’s sake. He was back to pull-ups and I figured I would regroup and try again in the fall. Then we met Sarah-Ève. (Cue the light shining down on us and dramatic music.) She was assigned to help us from the Quebec government and she changed everything. Through her, we learned the importance of social stories for autistic children. Social stories are descriptions, from a child’s perspective, of an everyday situation that helps the child prepare for upcoming experiences.

She started creating social stories for Leo. The first one was called “I can go to the toilet” and it had a cartoon picture of a little boy on the cover wearing a super hero cape. It sounds so simple, right? Creating a book, specific for the child, that details how to go pee in the toilet. It totally worked. Within a week of receiving that magic little book, Leo was peeing in the potty on a regular basis. Once he got, he got it.

Pooping required another book altogether. It was a bit of a harder road that involved a LOT of shit. It involved an obscene amount of toilet paper, ridiculous amounts of laundry and me washing my hands about 300 times a day, with them still somehow, at the end of the day, smelling like shit. It was gross. But, here is where the importance of having the right people around you when you have an autistic child and a husband who travels a lot, comes into play. Sarah-Ève and Christina convinced me, all the time, not to give up. Christina would come over for therapy with Leo and just give me a break. She’d be the one who would take a turn in the bathroom with Leo, reading the book over and over again, sitting on the floor while he was on the toilet, for 45 minutes at a time. There were definitely days I would have given up if she hadn’t pumped me full of encouragement.

In less than three months, the little boy that I feared would still be in diapers at 12-years-old, was completely potty-trained and even wearing regular underwear to bed at night. He did it. We did it. A little more celebratory wine. :)

We also have social stories about what to do when Leo feels upset and for sharing toys. We have a “calm-down chair”, a “time-out corner” and a special calendar that Sarah-Ève made with pictures of Daddy’s head velcro-ed to all of the days of the month that we will see Daddy. This helps the kids deal with Daddy’s heavy travel schedule this year. We have stickers on the calendar identifying the days that are “school days” and toys have been packed away and put out of reach to encourage Leo (and Eli) to ask for things and to teach them to cleanup one toy before moving on to another.  Our house has been transformed to make things easier for Leo. In making things easier for Leo, it has also made things so much easier for our family.

Situations that he wouldn’t have been able to recover from last year at this time, he pulls through like a champ now. 

I remember, at the beginning of the summer at our cottage last year, thinking how amazing it would be if Leo could tell me what he wanted for breakfast every morning, like Eli did. Leo just didn’t communicate that much - he probably had less than 50 words at that time. Now, the kid doesn’t stop communicating. In fact, this morning he tried to make a case that he should be able to have Easter eggs for breakfast. :) (I let him have one before breakfast...shhhh...don’t tell Daddy!) And instead of reminding him to look in my eyes and say “good morning” to me when he wakes up, as I had to do last year, now Leo climbs into bed with me in the morning, looks directly into my eyes and says, “Hi Mom. I had a good sleep. I have to go pee.” Like clockwork. Things have changed.

That is not to say we haven’t encountered new challenges this year. We have. Sharing is a constant issue for us and that is what his therapy is centered around right now. We are working on his aggressiveness with other kids (when he changed daycares earlier this year he decided to bite other kids during the transition...ugh.) And he is stimming a lot more lately - arm flapping, jumping and he gets a bit of a shake when he is angry or frustrated. We are always dealing with new challenges because of autism. But my outlook on autism, and on Leo specifically, has really changed.

Instead of being full of anxiety about what the future may hold for Leo, as I was a year ago, I am more convinced than ever that he can do anything that a typical child, can do. He is amazing. So smart, musical, artistic, and a really, really good boy. Simply put, I adore him.

I also adore Eli. I know that Leo would not be as far along as he is today if it weren’t for his brother, who is older by a minute. Eli is a constant support, comfort and friend, for Leo. We “use” him for Leo’s sharing therapy and he is such a big part of Leo’s progress. He is prone these days to saying, “I am waiting for my brudder” and “I want to do it with my brudder”. He is Leo’s best friend and my best helper. 





Things are going well for us. Not one day goes by that I don’t think about, and appreciate, how lucky we are. We have a high-functioning autistic son. I think about how different things would be if Leo was at the other end of the autism spectrum. It is something that P and I think about all the time.

It is this appreciation of the family we have, and our desire to encourage parents who have autism concerns about their children to have them go through the evaluation process (early intervention is key), that led P to encourage the Montreal Canadiens' Children's Foundation to get involved with Autism Speaks this April. April 2nd is World Autism Awareness Day and P and I want to do our part to promote autism research, awareness and compassion. 

At the April 1, 2013 game at the Bell Centre, there will be a feature on autism on the scoreboard. You can see that presentation online at: http://video.canadiens.nhl.com/videocenter/console?id=232194

I will be at a kiosk during the first intermission to tell people about an online auction that will continue for the month of April, where items including signed sticks from Steven Stamkos, Patrice Bergeron, Claude Giroux and Vincent Lecavalier, signed jerseys from Carey Price, Tomas Plekanec and Craig Anderson and signed gloves from Stephen Weiss (just to name a few items) will be auctioned off. You can access the online auction at: http://auction.nhl.com/cgi-bin/ncommerce3/User?id=monNHL&wl=12717464&type=L
The proceeds of this auction will be donated, on behalf of Team Canadiens-Pierre Groulx, to Autism Speaks.

I am captain of Team Canadiens Pierre Groulx and the twins and I (and P, if he is not working - but let’s face it, we hope he is working! Go Habs Go!) will be participating in Walk Now for Autism Speaks on May 26, 2013. Please visit our team page at http://events.autismspeaks.ca/participant/LeoGroulx

Once again, money raised from the online auction will be donated to Autism Speaks, on behalf of Team Canadiens-Pierre Groulx, which of course, is the team created in honour of our wee Leo. Pierre and I would like to thank all of the players who donated items, and those who helped us acquire the items, that will be auctioned off and we would like to thank the Montreal Canadiens Children’s Foundation for their help in organizing the auction and putting a spotlight on Autism Awareness at the April 1 game.

If you don’t necessarily want to bid on any items in the auction, please consider making a donation. Once again, you can access our team page at: http://events.autismspeaks.ca/participant/LeoGroulx

Thank you for your support - both your support of our participation in Walk Now with Autism Speaks and also, to our friends and family, for your love, kindness and the understanding that you have shown to our family over the past year - our first year living with autism. XOXO



Wednesday, 11 January 2012

The Day the Diagnosis Came



The day the diagnosis came I was a bit of a wreck. I had been preparing myself to hear it, as best I could, for close to two years. Yet, my eyes still welled up with tears as the doctor spoke and explained how she was about to formally diagnose Leo with mild autism. That was yesterday.

I have known since Leo was about 12-months-old that something wasn’t quite right. I had his twin, Eli, to constantly mark his progress, or lack thereof, and there was something about the way that Leo, as a baby, didn’t always respond to his name that made me know in my gut that something was wrong.


It has been a long, long journey to get to the formal diagnosis. I heard a lot of “he is just on his own schedule”, “he will get there” and “nothing is wrong with him” along the way. But I held fast in my suspicions that Leo, would in fact, need some extra help. Luckily, our son’s paediatrician has been an enormous help through this process. Although I am sure he regrets giving P and I his cell number (Ha!), he listened to every frantic phone call, to all of our concerns, and even made a housecall to see Leo in his own environment. He carried Leo’s file around with him for close to a year, and confessed to me that he found trying to locate the right specialist to diagnose a toddler to be a very frustrating process. So you can imagine how frustrating the process has been for Leo’s parents.


I won’t go through all the visits to the occupational therapists, the speech therapist, the tubes-in-the-ears, and the decision to have the assessment done privately, rather than through public healthcare with you, but just know that this has been a very long road. And here we are.


I went from “just knowing” that something was wrong with Leo when he was 12-months-old, to suspecting that it was autism for the past year. Every Google search I did that involved his arm flapping, his poor eye contact and his speech delay, all seemed to point me in one direction. (Side note: Doctors must hate Google, oui?) But to get someone to diagnosis a 1-year-old, or even a 2-year-old, is a difficult process. But I was determined to find out NOW what is wrong, and not wait until he is school-aged.


I gave myself yesterday to cry about it. I would just spontaneously break into tears at different points during the day. I gave myself yesterday to wallow in the fact that it sucks so bad that my son is autistic and I am powerless to just make it all better for him. I didn’t go to the hockey game last night so I could stay home, put on my pyjamas, and feel free to cry at will. I felt all the emotions you feel when you get this type of news. I felt sorry for Leo, as he is going to face some challenges in his life. Truthfully, I even felt upset for me because his challenges would mean challenges for me and I sometimes already feel overloaded with a husband who is gone a lot, and twin two-year-old boys. Then the next second, I would feel guilty for being so upset. It could always be worse. I could have been told that he was high on the autism spectrum or that he was fighting some sort of incurable disease. Then my guilt would subside, and I would feel sorry for Leo again.


Then I would feel terrible for Eli, Leo’s twin brother. While we have been on this adventure with Leo, we overlooked the fact that Eli needs a speech therapist to help with his delayed language. I am wracked with guilt that while dealing with Leo’s needs, I totally missed a huge one of Eli’s. He is currently on the wait list for a speech therapist at the Montreal Fluency Centre. I know he is only two, but if I had got him on the wait list sooner, then he would already be receiving speech therapy.


I am also feeling bad that Eli will miss out on certain activities because of his brother. But I do recognize that this is Eli’s cross to bear. He has a brother with autism. That is just the way things are. As a result, he has grown up very quickly and no longer seems like a two-year-old to me. I catch myself explaining things to him, like I would talk to an adult, and he listens quietly, nods and says “Yes, Mama.” Eli is a real sweetheart and a real help to me. He will be to his brother, too.


But, while I acknowledge my need for going through all of these emotions yesterday, I knew it had to end with going to bed last night. The difference in today from yesterday is now I know what is wrong. There is a label on it. Now I can start to find a way to help Leo. It is not going to be easy. We live in Quebec and figuring out how to access resources in a new province is hard enough, never mind doing it in a language you are not fluent in. But I will figure it out. I will try to be the best advocate I can possibly be for Leo. And, while doing that, I will try to best Mom I can be to Eli who needs me in different ways.


The doctor was quite certain that the right therapy will do wonders for Leo. She said there are no cognitive concerns with Leo. And with autism, cognitive ability will often be a factor in how well a child responds to therapy. And since a huge part of his problem is with language, once he is working with a speech therapist and can express himself, this will help very much. We will hold fast to her predictions of successful therapy and there are many reasons to be full of hope today.


I heard Leo call for me this morning and I went into his bedroom as he was waking up. I sat next to his bed and we started our morning the same way we do every morning. I said, “Good morning, Leo. Look at Mommy in the eyes and say ‘Good Morning, Mommy’.” He didn’t look at me or say good morning. I repeated myself several times but to no avail. Leo started to sing “Twinkle Twinkle Little Star” and I joined in. When we are finished, Leo yells, “Yay!” Then, just as I am about to stand up, he puts his little hand on my face, turns my face toward him, looks directly into my eyes, and says, “Mommy, again.”


I fought back tears as I sang “Twinkle Twinkle Little Star” a solid 10 more times. Like I said before, there are many reasons to be full of hope today - the day after the diagnosis.