Monday, 22 January 2018

Leo Has Autism Spectrum Disorder. No Asterisk

It has been six years since Leo was diagnosed with autism spectrum disorder.

Long gone are the days where he would bite instead of use words. (His brother is super thankful for this.) Long gone are the days where toilet-training seemed like a losing battle. (I am super thankful for this.) Long gone are the days where we would have to worry about him trying to physically pick up anyone smaller than him. (Be thankful tiny rugrats in our neighbourhood!)

I can read through my blogs about Leo and autism and see the different ways our family has been challenged by ASD through the years.

We have left a number of challenges behind us. But one of our current challenges is probably more in line with what most people think of when they hear the word autism. It involves social graces.

I used to love watching The Golden Girls. Who am I kidding? I still love watching The Golden Girls when it is on TV. Do you remember the character of Sophia Petrillo? The little old lady who suffered a stroke and was left with a condition that made her unable to censor her comments?

That is Leo. He is a tiny little Italian woman who will cut you with his words. I joke. But also, I don’t joke. I am living with a mini Sophia Petrillo.

“Mommy, thank you for making this meal for me, but it is the worst thing I have ever tasted.” Boom. (I prepare a vegan meal once a week. Leo loves it.)

“Mommy, those overalls make you look like Mario or Luigi.” Um…

“Mommy, this supper is not as disgusting as I thought it would be.” Thanks, I think. (Vegan for the win!)

Whenever he starts a sentence with “No offence, but…” I brace for it.

During the holidays, he opened a present and said to the present-giver, "Thank you very much for these jelly beans. Even though I really do not like jelly beans and I will never eat them."

These examples are quite amusing, I know. Here is one that is not so funny:

“Sure you can, grand-maman! If you are not dead by then.” 

Leo actually said this when talking with his brother about living together as adults, with their future dogs named Bowser and Yoshi, and his grand-maman asked if she could visit them. Ouch.

Leo has always been a polite boy. Please and thank-yous? Check. Asks to be excused from the dinner table? Check. Does his chores? Check. 

However, this dude continues to surprise me with his bluntness and his commitment to always, always telling the truth.

Telling the truth is usually seen as a good thing, isn’t it? 

It has some pluses. For instance, if Leo is ever in an argument with a friend (or his bro) over a he said, he said type of thing, I find that Leo’s version of what happened is the truth most of the time. Between his strong memory, and his inability to lie, I find myself relying on his account. Where Leo might run into problems with a friend (or his bro) is that he can often misjudge or misunderstand the intent of someone’s actions or words. That is usually what will upset Leo in a scenario. But he generally nails the “what happened” part.

But telling the truth can have a negative side. Most people know instinctively what not to say. Like not mentioning that grandparents might not be around for future events. Most people know how to fake their way through a meal, without delivering the message “I don’t really like it” with such fervour as Leo does. But it is as if Leo is not equipped to know how, or when, to soften the message.

We have known that Leo has been on the spectrum most of his life. But I have always placed him there with an asterisk next to him. He has ASD, but he is highly-communicative. He has ASD, but he can be affectionate. He has ASD, but he does quite well socially.

Having trouble navigating social skills has never really been Leo’s main challenge before. 

But here we are.

Leo has ASD. No asterisk.

Leo. Telling it like it is.
Leo’s teacher was telling me a story recently about her prepping his class for Ontario’s Education Quality and Accountability Office (EQAO) assessments that Leo’s grade will take later this school year. 

She presented a practice multiple choice question that talked about sentence structure. The question asked the students to identify the option that had a more complete sentence.

This particular exercise caused a fight with Leo and his bestie. Leo loves this friend. The pair have play dates on the regular and the two minis are tight.

The argument happened because Leo started to rate his buddy’s sentence structure. He would say things like, “Oh dude. The sentence you wrote there *gestures toward friend’s classroom work* is clearly only a 2 on a scale to 10. It needs some work.” 

Obviously his friend took exception and the whole thing resulted in some hurt feelings. 

Can you see how this happened? Leo is asked to judge sentence structure for school work, but when he carries on the activity, he ends up hurting feelings. It is confusing for his brain. 

My brain would tell me not to say it out loud (even if I think it) because it might hurt someone’s feelings. But mini Sophia Petrillo’s brain wants to point out some poor sentence structure when it sees some.

My point is that Leo can’t go around correcting or insulting his friends’ work. It seems like a surefire way to lose a friend. Fast. 

But Leo does not, and cannot, fake it. 

As a mom to a mini with ASD, who has faced a lot of challenges and will face more, here is my new mission:  I have to teach him to fake it. At least a little bit.

I have to find a way to teach him there are certain things that will be upsetting for others to hear.

I want to try because I want him to be able to sustain lifelong friendships. I want to try because I want him to be able to go on dates one day. I want to try because I want him to be able to nail a job interview in the future. If he can figure this out now, it will make life a lot easier for him going forward.

We all practice thinking before talking (or at least we all should) but could you imagine having to think about things that just seem to come naturally to you? To have to second-guess most of your thoughts? 

He has to consider whether what he is about to say, about any everyday topic, could potentially be upsetting for someone. It seems like a big mountain to climb, but I am determined to climb it with him.

We’ll start slowly. When I hear some blunt Sophia Petrillo truths coming out of his mouth, we will stop the conversation and I will ask him some questions. Things like, “How do you think that makes person-on-the-receiving-end feel?” “How would that make you feel if it was said to you?” “Can you think of another way to say that?” “Did it need to be said?” “Why did you feel the need to say that?”

Maybe, just maybe, we can identify some sort of pattern to his bluntness. Maybe he is more apt to Sophia Petrillo the shit out of someone when he his tired. Maybe when he is hungry. Maybe when he is hangry. 

Damn, I know that I can say things that are best-not-said when I am hangry. And maybe there won’t be an identifiable pattern to it at all. But it is worth a shot to find out.

Leo is seriously one of the funniest, brightest, and sweetest little boys. He is a great dancer and a snappy dresser to boot! I want all people, from this second forward, to see him for all of those things. I don’t want friends, family and future people in his life to be deterred by any straight-up bluntness.

But there is going to be one exception to all of this. He never, ever has to filter anything he wants to say to me. I want him to know that. And I mean it.

My dinner sucks? Tell me. I am dressed like an old Italian man? I can take it. I totally look like I am turning 40 this year? Easy there, kid. Ha! Just kidding. Yep, I know.

There has to be one person with whom he never feels like he has to censor himself. One person with whom he can just be Leo at all times. I will be that person for him.

There is also secondary motivation behind me being his one exception to thinking before speaking. The twins will be teenagers one day. I spend a lot of time considering how his always-telling-the-truth will work for our family at that time.

Here is an example that I can’t get out of my head: One day, I picture the twins as teenagers who don’t want to get into a car with a buddy who is driving, but who has also been drinking. I can’t have Leo in this scenario second guessing himself, wondering if this is one of those times that he shouldn’t tell me the truth. Wondering if he will get in trouble. Wondering if I will be disappointed.

No sir. Call me. I don’t care if you are not where you are supposed to be. I don’t care what was happening at the party. I don’t care. Call me. I can’t have him second guessing that instinct, in that type of moment, ever. So the think-over-everything-you-say rule will never apply to me. I can take whatever you can dish, Sophia.

These social issues, and continuing to work on having reactions that are in line with the size of challenge that Leo is facing, are what we are currently working on in our family. 

It is a really good period for us. Leo is doing fantastic at piano and drama class. He loves school. He has recovered like a champ from his second eye surgery. And despite him being in a different class than his brother for the first time ever, and the twins naturally drifting in different directions a little bit this year, he is doing so well.

We couldn’t be more proud of Leo. But today I feel like ending this blog with a story about Eli. 

Leo and Eli - Twin Love
When I read some of my earlier blogs, I express concern over how autism will impact Eli’s life. I note that he grew up, in a lot of ways, faster than his brother. I write about how he had to give in a lot as a young child in order for us to accommodate Leo and autism. And I always, always wondered if we were doing enough for Eli while constantly dealing with Leo and autism.

Earlier this school year, Eli’s teacher gave me a gift when she told me a story about Eli. She said everyone likes him. He is in a split class, where he is in the younger grade. She said that the older kids like him as much as the kids in his own grade. She said that even students that have some challenges seem to be drawn to Eli and he is so kind and patient with everyone.

I spoke to Eli about these compliments. I told him I was proud of him and how kind he was to everyone. And he said this to me, about one of the students that seems to have a bit of a harder time in his class, “I like being his friend and I think that if other kids see me being his friend, maybe they will want to be his friend, too.”

I told him I thought that was an amazing way to look at it. And then I went into my bathroom and I cried my eyes out. Seriously, who is that kind and thinks about that on his own at 8-years-old? He is growing into such an amazing little dude and I could not be more proud. Here I was, afraid of autism in our family impacting Eli’s life in a negative way. It never occurred to me it would have a positive impact.

This is autism in our family at age 8.

Friday, 31 March 2017

Autism and Optimism - Now He Knows

With World Autism Awareness Day approaching on April 2nd, I thought this would be a good time for an update on autism in our house. Also, if you are wondering how you can pledge some support to Team Ottawa Senators, the team we have created for the upcoming Autism Speaks walk in Ottawa, keep reading to find out. :)

It has been five years since Leo has been diagnosed with Autism Spectrum Disorder (ASD). This is the first blog entry I have written since Leo has learned he has autism.

The night that I told Leo he is on the spectrum was not planned. I had no idea I was going to do it until I did it. I had spent a lot of time thinking about telling him. But the actual monumental moment in the Groulx household — at the dinner table with Leo’s twin brother Eli — was unexpected.

The boys were telling me about their school, explaining how some children need to take body breaks. This got my attention and I listened attentively as my kids explained to me that sometimes kids at school take breaks in order to, as we call it in our house, get the beans out. To get them moving so that when they return to class, they are able to focus.

I quickly sensed that this was my opportunity. It was the perfect time to talk about how everyone has different strengths and weaknesses. And how everyone has different needs.

Before I could talk myself out of it, I told the twins about autism. I told them it was a developmental brain disorder that impacts people in different ways. I listed a few of the attributes that Leo demonstrates. I said that it could mean that some people jump up and down and flap their arms. It could mean that some people are bothered by loud noises. It could mean that some people have trouble fitting in with their friends when they can’t find the right words to use. I asked if that sounded like anyone they know.

Just as Eli said it sounded like Leo, Leo said, “Hey! That sounds like me!”

I said, “That’s because you, Leo, have Autism Spectrum Disorder.” 

And there it was. I said the words out loud. There was no going back now.

We talked for a few minutes about how ASD means Leo’s brain works a little differently than others — not worse, not better. Just differently. 

I pointed out to him that is why the noise of a hockey game, or an assembly at school, or an overly aggressive bird at a zoo (Leo and swans DO NOT get along), seem to bother him more than others. I pointed out to him that is why joining in with a group of friends can be a bit tricky for him. I pointed out to him that is why he is so bothered by some smells that the rest of the family has to eat certain foods in a Leo-less room.

The Family Groulx, at a zoo, avoiding any squawking birds.

A lot of good came from that conversation. I think it has given him some understanding as to why he feels the way that he does at certain times. It has also given PG and I the freedom to ask questions that we wouldn’t have asked before.

Now when we see him jumping up and down, we feel it is okay to ask him what he is thinking about it. We say, “Leo, we see you are jumping. That is from the autism and that must mean you are thinking something exciting or something is bothering you. Will you tell us about it?” Sometimes he happily tells us what he is thinking. Other times he says it is something he would like to keep private, which is just his polite way of telling us to mind our own business. We don’t pry but are thankful for the opportunity to ask the question now.

Leo is attending his third elementary school (he is in grade two) and living in his sixth house. Considering that most people with ASD thrive on routine and consistency, this kid is adjusting like a champion. He likes his teachers, he is doing well in school, and he has made friends. We are pleased and proud.

Leo, all smiles, after getting through a hair cut with no tears. We celebrate the small victories.
But that does not mean we haven’t hit some bumps along the way. In an emotional moment for me earlier this year, I looked at Leo one night at Applied Behaviour Analysis (ABA) therapy, sitting amongst a group of children who were also on the spectrum, and for the first time ever, I saw that he truly belonged in that group. It hit me like a ton of bricks.

I have only come to fully realize recently, that no matter how hard Leo works, no matter how hard I work to help him, Leo will always be on the spectrum. There is nothing I can do to change that. It is something that I thought I understood the moment he was diagnosed. But I found the moment that it truly sunk in - five years after the diagnosis - to be an emotional one. It felt like a punch in the gut.

The latest challenge for Leo definitely falls under the social interaction category. He feels attacked when something appears to be done to him. Any little thing. He gets bumped in the hallway — they did it on purpose. Someone takes a sheet of paper that Leo thinks is his — how dare they? Someone beats him in a game — how could they do this to him? Things are blown wildly out of proportion and result in Leo crying and sometimes refusing to take part in an activity.

When this happens at school, it can be distracting for the class and a disruption for the teacher. 

When I get word from Leo’s teacher that one of these incidents has occurred, then Leo and I review information we have collected from ABA, or read some social stories we have at home, that address the current issue.

We have material we regularly review on how to be a good friend. We have a book we read, that Leo's Grandma bought him, that talks about what to do with a problem. We have material we regularly review on determining the size of a problem. This is a big one for Leo right now. We are trying to get him to understand the difference between small, medium and large-sized problems and how his reaction to the problem should be in relation to the size of the problem. (“No, Leo, that person accidentally bumping you while putting on their coat next to you is not a gigantic problem.”)

Another tool his teachers use at school, and we use at home as well, is Kelso’s Choice. This tool is part of some elementary school curriculums and aims to give students the power to do their own conflict management. It is also a great tool for any child on the spectrum. Leo has a little laminated circle that he can carry around with him, depicting Kelso the frog choosing different ways to solve a problem. The goal is to get children to review their choices and then choose an appropriate response to their current conflict.  Responses include “Wait and Cool Off”, “Walk Away”, “Apologize”, “Share and Take Turns."

Leo was recognized by his teacher a few weeks ago for using Kelso’s Choice — he was so proud. Speaking of teachers, we have a couple of great ones this year. As I have said, I know that Leo’s behaviour can be distracting for others and it is so important how a teacher handles the situation.

His homeroom teacher, who instructs him in English (he has French classes in the afternoon) told me a story that I love. It not only provides a snapshot of Leo’s brain and how literally he is taking words right now (we have been learning about figures of speech at home) but it also speaks to what a fantastic teacher he has.

In December, the boys’ teacher gave the twins’ class a writing assignment. They were to write about why they would like to be a gingerbread cookie. While the rest of the class started their assignment, Leo refused. His teacher sat with him and tried to encourage him to brainstorm some ideas for the assignment but he remained steadfast in his refusal. Then his teacher recalled a conversation she previously had with me, where I told her that he is taking things literally. We try to avoid phrases like “in a minute” or “just a second” in our house.

So his teacher had an idea. She asked Leo if he would like to write about NOT wanting to be a gingerbread cookie.  He said yes and picked up his pencil and started writing. I love this story. I can picture Leo, confused, and not wanting to write about being something that ultimately gets eaten.

But what really stands out to me in this story is the teacher. She took a minute. She sat down with him. She recalled information I had told her. She understood how he felt about the assignment and by changing the instructions, she ultimately got him to do the assignment. With another teacher, he might have been seen as misbehaving. I am so thankful that she is his teacher and has found a way to reach Leo more often than not.

I can’t really say enough about the twins’ school this year. Both of Leo’s teachers do not let him use autism as an excuse. PG and I are so thankful for that. When there is indoor recess, the noise regularly causes Leo to make his way to the office, where he eats his lunch. He is welcomed, and made to feel safe, by the office administrator, principal and vice-principal. PG and I are so thankful for that.

The chair of the parent council asked me to help with an autism awareness bulletin board for autism awareness month (April) and connected me with another parent who also has a child on the spectrum. I am so thankful for that. 
Autism bulletin boards at the boys' school.

The school’s principal carefully considered what message he wants the students to hear when the school marks World Autism Awareness Day. (As of the writing of this blog, he was considering using this video to help educate the children.) PG and I are so thankful for that.

And the boys’ school is going to hold its own autism walk, donating some of the proceeds of that walk to the Ottawa Senators Team, as registered for the Ottawa area Autism Speaks walk. PG and I are so thankful for that.

This year’s Ottawa Autism Speaks walk will be held the morning on June 4, at the Bell Sensplex in Kanata. PG and I previously fundraised for the Montreal walk when he was with the Canadiens. Now that he is the goaltending coach for the Ottawa Senators, we would like to once again do our part to help promote autism research and encourage awareness and compassion.

Leo is a high-functioning, thriving boy. We are so thankful for how far he has come. We know we have current challenges, and we will face more in the future. But we consider ourselves fortunate. We know that families who have members who fall at different places on the autism spectrum, face many different kinds of challenges. We choose to walk for them. We choose to walk for Leo.

Please consider donating to help positively impact the autism community.

You can visit our Ottawa Senators Team page and you can make a donation by visiting this page: 

To any of our Ottawa-area friends, family, and neighbours, who would like to donate and/or walk with our family on June 4th, please visit the this page and click “Join Wendy's Team” in order to register for the walk. We would love to see you there!

Finally, please share this blog post, or the donation information, to encourage anyone who has the inclination and the means to pledge our walk for Autism Speaks. We really appreciate your support.

Here is my favourite story from the night I told Leo that he has ASD. I asked him if he had any questions as he was leaving the dinner table to go play. I will never forget his answer. He happily said, “Nope - I am good. My brain has optimism.”

I eventually got around to correcting him. But at that moment, I just smiled and said, “My brain has optimism too, Leo.”

Monday, 17 October 2016

“You are on the Autism Spectrum” — A trial run.

I am taking a break from reading a text entitled How to Talk To Your Child about a Diagnosis. I have read it several times over the last few months. I know the moment is coming to talk to Leo. It almost came in the spring. Then it almost came again last week.

I wrote about learning of my son’s Autism Spectrum Disorder diagnosis when he was two years old. I updated a year later, when our family was adjusting to living with autism. And here we are now, five years later, talking about telling my son he has a developmental brain disorder.

Leo is 7-years-old. Reading that, I feel like it is too young to tell him he has a disorder that will impact his choices and actions for the rest of his life. But is it really?

PG and I don’t want to ever give him an excuse to not want to try something new. To think he won’t be good at something. To hold him back. 

At the same time, sometimes I think that he is ready to hear it, and that knowing his brain works a bit differently, might help him comprehend situations where things have not felt quite right for him.

It also might be an “ah-ha” moment for his twin brother, Eli.

Last spring, one of Leo’s educators at his former school almost told him for us. In actual fact, she told her son that Leo was on the spectrum. Her son was in Leo’s class, and this boy started telling other children in the class. So, the son of one of Leo’s educators almost told him for us.

As Leo’s parents, our first reaction to hearing that children in the twins’ class knew of, and were talking about, Leo’s diagnosis, was to have an epic freakout. You know the kind. The kind of freakout where if we were cartoons, steam would be coming out of our ears. The kind of freakout that means you put the kids to bed early and then, maybe, swear a little (or a lot.) The kind of freakout that required our neighbours to come over — with wine.

In our experience, any differences amongst children our twins’ age (7), including a former classmate afflicted with Down syndrome, could, and should, be summed up with these words: everyone is different. Everyone has different strengths. Everyone has different limitations. Everyone needs a little bit of help in different ways. That was all that Leo and Eli ever needed to hear if they had any questions about a person’s behaviour that was different from their own.

But we took a breath (drank some wine), and came to a couple of conclusions. 

One, obviously this educator must have thought that Leo knew of his own diagnosis — that was our bad. He had always been young enough that we assumed that no one would think that we had that conversation with him yet. 

Two, we needed to get ahead of this so that Leo would not learn of his diagnosis from a 7-year-old classmate. He deserved to hear it from his parents, in a comfortable environment where he could ask questions and have alone-time if needed. But we were not ready, at that time, to tell him. It did not feel right and we did not want our hands to be forced in this matter. So our attention turned to stopping the children from talking about it.

I went to the school the next morning to talk to his teacher (who was not the educator that nearly outed the diagnosis.) I told her what had happened. She promised to be my eyes and ears at school. If there was any rumblings of the A-word, I would get a call and would be able to get Leo so I could have a talk privately with him. 

That call never came. We were able to make it through that last month of their former school without having to tell our sweet Leo, that he is, and always will be, on the autism spectrum.

Most of you know that our family has been through a lot of changes this summer. Another move (this is now the sixth house that our children have lived in.) PG back with another NHL team. Another school for the boys — their third. This time we weren’t going to make the same mistake about not communicating to the school that Leo does not know he is on the spectrum.

In classic Groulx family style, we made our presence known at the new school long before the school year even started. The accommodating principal took the boys on two tours of the school to make sure they felt comfortable before the first day arrived. We met with the new teachers before the first day, where I was able to sneak them both a sheet of paper, outlining any of Leo’s challenges and what autism-related behaviours they might come to see over the course of the year from L. We knew their school day schedules. We were ready for that first day of school.

When it arrived, and the boys were standing in a line ready to enter the building that first morning, the nerves crept in. They stood, hugging each other, until it was time to enter. I held back, watching them, feeling all of the feels, tears masked by my Ray Bans.

Brotherly love and first-day-of-school nerves.
I had prepared them as best as I could. We visited the school a number of times, meeting the principal and teachers, we talked about the daily schedule. I did what I could do. Now it was time for them to go inside, by themselves.

My eyes are welling up with tears as I am typing this, because I can’t help but draw a parallel to telling Leo about his diagnosis. We have prepared him as best as we can. We have given him tools. At some point, he has to learn of it, and make sense of it, on his own. 

We got a lot of early help for Leo when he was a toddler. I have taken several seminars on parenting children on the spectrum. We don’t let him give up on situations that are hard for him. 

For example, Leo has a sensitivity to sound. This was never more apparent to me than one time when we were having lunch at home together. It was a September afternoon, and Leo was home sick from school. I made him some soup and we were sitting at the dining room table in our cottage, with the window open slightly. He covered his ears with his hands. 

“Leo, what is the matter? Why are you covering your ears?” I asked him. 

“Because the birds are chirping so loudly, Mommy.” Were there birds chirping? Yes. If I stopped and listened, I could hear a bird or two chirping outside. But it barely registered as background noise to me. And here was this child, sitting at the table trying to drown out the incessant chirping. I closed the window and we finished our lunch together. I am forever grateful for that day because it provided me with a snapshot of what it is like to be Leo.

So do we always avoid noisy environments to help him? Hell no. There is not a chance that this kid is going to be able to stay out of uncomfortable, or loud, situations for the rest of his life. So we come up with ways for him to cope through. At family events, where it is loud and there are many people, he has a quiet area where he can go to regroup. I carry earplugs in my purse in case of pop-up marching bands or in case we ever find ourselves smack in the middle of a flashmob. (That, by the way, has never happened before but I kind of wish it would. Just sayin’.)

We are, of course, a hockey family. When I say that, people assume the boys play hockey. They don’t. Leo refuses to learn to skate. Ha! And PG and I have never forced the issue or pushed them to play a sport they are not interested in playing. What I mean by hockey family that is that we live where we live because my husband is a hockey goalie coach. The boys are citizens of two countries because of hockey. They have spent time in three European countries because of hockey. Hockey, and hockey games, are a part of our life.

I want both the boys to know what it is like for their Daddy to take them into the locker room of a professional sports team after a big win. I want them to see their Daddy after a tough loss, and watch him figure out how to regroup and start again the next day. I want them to experience what it is like to be a hockey family.

Of course, hockey is a LOUD part of our life. The easy thing would have been to always let Leo stay home from hockey games. But, instead, we looked for a solution. 

Ear plugs just didn’t cut it in the loud arena environment. I was going to buy noise cancelling headphones, but then a friend of mine posted a picture on social media of his daughter, who is the same age as the twins, at a concert. She is wearing an earmuff type headphone to protect her ears from the loud noise of the show. Bingo. That’s what we needed. I found a pair of ear protection headphones for a child up to age 10 and they did the trick. Leo happily sits through hockey games wearing those headphones.

E and L at a hockey game.
He has even come up with a couple of other ideas of where to wear them.

“Mommy, can I wear my headphones to the movies when the new Star Wars movie comes out?” Um, yeah. You can, dude.

That’s autism in our house. Challenges? Yes, we have them. But we are always trying to come up with solutions for him to get through anything he faces.

Now PG is with the Ottawa Senators. The two of us have been talking lately about trying to work with the team in order to do some fundraising and to increase autism awareness, like we did when we were in Montreal

We are so fortunate. Leo is high-functioning, communicative, affectionate, and one of the sweetest little boys I have ever met.* We know we have it so good. But we know that other families have children at different spots on the spectrum and their challenges can be difficult. We want to do all we can to increase autism awareness.

But if we do this again, with an NHL team, we have to think of Leo. He is now school-aged and has not asked for any extra attention that his Daddy’s job (or his Mommy's blog) might bring to him. We have to keep him in mind, and measure that with the fact that we are in a position to bring awareness and help fundraise for autism groups. 

That is one of the primary reasons we are thinking of telling Leo about his diagnosis. We will not let him hear from anyone but his parents. It almost happened before and that won’t happen again. I did a trial run the other day.

He came into our room while I was ironing and he was talking about Pokemon. When he stopped talking, I told him that I was at a seminar earlier that day. He asked me what a seminar was. I told him it is a presentation where you learn about something. He asked what I was learning about. I hesitated, and then said, “Autism.” 

I dipped my toe into the water.

Leo laid down on our bed at this point, not looking at me, and asked, “What is autism?”

Do I dip another toe in? Do I wade in slowly? Do I just say to hell with it and dive in head first?

“Autism is a developmental brain disorder. It can impact people — lots of people, both adults and kids — in many different ways. Some people hear noises a lot louder than other people. Some people have communication trouble, so they can get upset quickly if they feel like they are not understood. Some people do repetitive behaviours, called stimming, to help them deal with things, or noises, around them. Things like jumping up and down a lot. Or flapping their arms.” 

I waded into the water, holding my breath at this point.

“Does that sound like anyone you know, Leo?”

He waits for a few seconds and then tells me that he is going to trade one of his Pokemon cards at school the next day. Okay, Leo. You do that. I know he heard me. It did not upset him. It did not lead to any more questions. But I know it is percolating. 

Because we can’t let him hear it from anyone else. Because we want to be able to fundraise for autism while PG is in a position where he can raise some awareness and do some good. Because, every day, it is feeling more and more like it is time.

I have read a lot about it. The closer I get to actually telling him, the stronger I am feeling. He will not see sadness from me. He will only see pride. Leo’s ability to overcome his challenges leaves me in awe. His now-strong communication skills floor me. And PG and I always comment on his ability to self-regulate and take breaks when he is feeling frustrated or upset. If only everyone had that ability to take a quick 2 minute break when they are feeling angry!

My brain works this way. Leo’s works that way. Just like we have brown eyes and others have blue eyes. There will be no sympathy. Not from us. I only want him to see, and hear, strength from his parents. There is nothing wrong with him. Just like his brother, Leo is unique. Special. Our little lion.

This is autism in our family at age 7. 
Our Leo.

*I realize I am biased, but he really is!

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.