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