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!