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.