Every year we are reminded of the perspective that Alex has brought to our lives. What do I mean by perspective? Often times it is a way of looking at things that is very different from how we would normally look at things and in a way that reminds us of what is really important.

Earlier this year Alex said “Good morning mom – I feel like a thousand bucks today”. “Don’t you mean a million bucks Alex?” I said. “No a thousand is more than enough” he replied. I thought about his perspective on the value of how we feel, relative to how we measure things. A thousand bucks is actually pretty good.

We often have discussions about the weather and Alex’s perspective is interesting in that he relates smells to feelings. When I have asked him if it’s cold outside on a fall morning he has said “Yes, as cold as dead leaves”. On a hot summer day he remarks “It’s sauna rock steam hot today”. I think he has only been in a sauna twice but clearly it made an impression.

Alex is also always planning for the next occasion or trip while the current one is barely underway. From his perspective, he needs to know what is happening, when, how and why. This is often to avoid a repeat of what we are doing – due to his discontent with it – or to ensure we will do it again soon if he is enjoying himself. This year while boarding a plane to head south, Alex explained to me “Mom, next year I think we should avoid a beach and stick with a City with good WIFI. The sun and sand is nice and all but I’d like to have more technology – maybe Tokyo or Kobe in Japan?”  On the bus headed to the hotel, he repeated this request to seek confirmation of his future travel planning. “Mom, what do you think for next year Tokyo or Kobe? Or what about Miami? That is my compromise.” “I don’t think so Alex, let’s just enjoy this vacation and we can discuss the next vacation later” I responded. “Well okay, probably too far anyway but please write my ideas down and we can have a family meeting about it later”. Not five minutes passed when he asked “Mom, Dad, I have decided anywhere in Florida would be okay and it could be in 2020”. “Okay Alex we can discuss it later”, we replied. “Or maybe Egypt” Alex says “it has history and WIFI – I know we’ll see, we’ll see”. “Yes Alex we will see, now let’s just enjoy today” I said. Not 10 minutes passed when Alex asked “Hey mom, when will you next be headed to Niagara Falls? That is really close and has good WIFI”. Now this question has importance and I replied “Yes we can plan a trip there” promptly and for a good reason.

Alex has always loved Niagara Falls. From the time he was old enough to remember, there are things he associates with Niagara Falls that he really enjoys. He loves to walk up and down Clifton Hill and see all the museums and haunted houses (he can name all of them and their “scare” ratings). He of course loves the arcade and the Skywheel. I think he has been through Ripley’s Believe It Or Not museum more than any other person and literally has memorized every exhibit and fact inside. Of course, a visit to Niagara Falls requires planning and whether it is with us by car or with his worker by bus, it’s important to plan ahead and set expectations with Alex – when we are going, how long we will be there and the itinerary. Any mention of heading there brings up an important lesson for us and Alex.

About three years ago I was headed to the Niagara Falls area for work. As we were leaving at the end of the day, we were slowly passing a bus stop, the last one before you get on the highway to head back towards Toronto. I said to myself, wow that guy with the shorts looks like… Alex…wait that is Alex! To my shock and disbelief there was Alex full out dancing at the bus stop, head phones in, wearing shorts (it was October) and we locked eyes. The look on his face was also one of shock and disbelief.  I hit the button to roll down the passenger window. Something my work colleague was confused by. “Get in!” I yelled. “Uh oh!” was the response. As Alex got in the back seat, my work colleague looked at me with shock and disbelief. “What is going on?” she said. “Nothing anyone needs to know about” said Alex from the back seat. “Please do not tell anyone about this!” said Alex. “About what?” said my work colleague, “can someone please tell me what is happening?”

Alex then proceeded to explain, based on his perspective, what was happening. “Well, hello by the way, my name is Alex and I am in quite some trouble it appears from the tone in my mother’s voice. I have done something independent that was not discussed or approved at a family meeting. And, I probably should be wearing pants. Please promise what happens in Niagara Falls stays in Niagara Falls.” With a look of complete confusion my colleague turned to me and said, “Is this your son Alex?” Before I could respond, still trying to process how Alex got to where he was on his own, and focus on driving as we were now entering the highway, Alex responded, “Perhaps not for long as I may be up for adoption.”

The drive home was a very long one. Alex continued to repeat, “Please do not tell Dad”. And I kept repeating “Alex, you cannot just get on a bus and go places by yourself without telling us. Anything can happen and we won’t know where you are. You could run out of money or your phone battery could die or you could get lost or worse. We can talk about it further when we get home but you cannot go far distances by yourself or without a plan – never again. We have to discuss these things.” Alex replied “Mom, clearly this has upset you. So just to be clear, you are not angry that I wore shorts? It seemed like summer weather when I left, no quite sauna rock but close, I even checked the forecast. ” After reflecting that Alex was safe and luckily nothing bad had happened, I responded. “No Alex, I am not angry that you wore shorts. “

It remains, all about perspective.

I think it has actually been close to 6 months since my last blog post but a lot has happened and things are slowly getting back to “normal” (whatever that is – remembering that this is a blog about the lighter side of autism). Earlier this year I lost my mom, Alex’s grandmother, to cancer. It was and has been very difficult. Alex dealt with things remarkably well and reminded me several times to “just let it out”, “it’s normal to be sad and to cry and get it all out it”. I am sure those expressions by him were somewhat rote learned but they were actually very helpful and he is right it is good to get it all out.

The last few days my mom was in the hospital Alex did something that made me realize that people with autism can and do have deep affection. When he came into the room my mom was sleeping and he quietly held her hand and started singing the “I’ll love you forever” song from the Robert Munsch book. For anyone who has read that book you will know that it created a remarkable moment. Not a dry eye to be found. At the funeral he also spent a long time just kneeling by my mom and telling her that he had heard “heaven is a really nice place and everything is free so you won’t have to carry your purse around”. He also always finds a way to make us smile.

Alex of course had his “moments” at the funeral visitations. He asked one friend if he was related to Alfred Hitchcock. Of course my good friend, being a good sport, just smiled and said “not that I know of Alex”. He also told another good friend, whom he had not seen in a while, “you sure have gained a lot of weight. I am not sure she was impressed. And while I was saying goodbye to some friends, he casually came up and asked “Mom, is now a good time to talk about my inheritance?” Of course they all know Alex and one of them simply said “No, Alex it is not a good time”.

Early in the new year Alex also got laid off from his job since the store was closing. That was really tough because it was his first part time job and he really enjoyed it. He has been working hard to try to find another job but it is one of the most difficult things for him as his behaviour can become challenging even with employers who are willing to accommodate him for a position. He recently had a great interview set up and we must have practiced the questions for days. He even agreed to get a haircut and beard trim the day before. I asked him how the interview went and he said “fantastic, I told them everything they wanted to hear”. It turned out he did not get the job and when the agency followed up the employer said it was very strange as Alex had checked off he could work part time but when asked what days he could work he said at the interview “well actually, I don’t really want to work all that much, maybe just Wednesday morning since my schedule is pretty full most days and I have a lot of stuff I have to do, working too much would not be ‘normal’ for me, thanks for asking though”.

Recently, he went to another interview and this time I went with him, if only for moral support and to remind him what part-time means. I sat within ear shot and almost burst out laughing when I heard the interviewer ask, “So Alex, have you ever seen anyone at work put themselves in a dangerous position or done something against the rules – what did you do?” “Well yes, “said Alex, “at my last job this one girl smoked cigarettes on her break. I told her several times that is was extremely dangerous as she could be prone to cancer and her teeth would turn yellow and fall out and it was highly unlikely she would ever get married because her clothes would smell.” All I could see was the interviewer’s shoulders shrugging up and down in what must have been greatly suppressed laughter. The job search continues.

In the last two weeks, we have welcomed a new puppy to the house. Interestingly, instead of joy, it has caused significant stress for Alex. Much of the stress comes from a disruption to his routine. His otherwise ‘normal’ daily routine now has added responsibility of feeding and taking the dog out. We worked out a schedule which Alex could put in his phone with reminder alerts but like clockwork I would get a call before and after the “feed dog and put her out to go pee” alert. “Mom, it is 2:30 and it says to put the dog out. Just letting you know that is what I am now doing”. At 2:35 pm I would get a second call, “Hey Mom it’s me, Alex, I have let the dog out and she went pee and I gave her a treat. When you get home I also want to show you the dog boarding kennels I found. I think we need to send her away to boarding school and she can come back when she is older and fully trained. Bye.” Of course Alex had done some extensive research finding a number of local kennels and training schools with dates and costs. He has now asked me at least 12 times when will things will be back to ‘normal’. I have replied that I don’t know and maybe they never will be and in fact never were.

Alex has replied “You are right Mom, normal is overrated.”

Words of wisdom for 2017

Empathy and compassion are complex emotions which some would argue are emotions that people with autism struggle with at times. Our values and opinions are formed by our experience and our upbringing and the values instilled in us from our parents as well as our social interactions. As a parent of someone with autism, I worry that the media and social media has now become a very powerful influence on shaping Alex’s opinions – perhaps that is true with many young adults on the spectrum.

So I asked Alex his thoughts on a few things thinking I would get a different perspective given his unique and often unconventional way of perceiving things. I thought the responses were worthy of posting and sharing – perhaps some words of wisdom as we head into 2017.

How does it make you feel when you hear someone making fun of someone with a disability?

“A bit angry because they are not very smart to do that. They don’t understand that everyone has a layer – underneath we are all the same. We are just all wearing different coats and that’s okay. I have a big puffy coat that keeps me warm but sometimes I take it off on the bus because I get too hot.”

What can we do to make people better understand what it is like for people with disability or what it’s like to have autism?

“Just let them know it’s okay. I was at swimming one day at the YMCA and there was a kid screaming in the change room. I told him to stop and be quiet – he was really bugging me. His friend came over and told me he couldn’t help it because he had autism. I told him I had autism too but I didn’t yell and scream like that. His friend said he couldn’t control his voice like me and that I was lucky. I saw him later on in the pool and he was laughing and smiling so I introduced myself to him. I told him I had autism too. When I finished my swim that day I saw him outside with his mom getting in the car. I went over and said hi and told his mom that I had autism too. She just smiled. I told her he looked like he had a lot of potential. She said I was an angel. That was strange because angels have wings and I don’t have wings. My dad explained what she meant.”

What was your favourite memory of 2016?

“There are lots of memories. I did like going to the drive-in with you. Next time I want to stay for both movies. I am also glad Zoe is home. I sure did miss her. Christmas was good but I sure do hope Nanny gets better.”

What are your thoughts on 2017 – a new year?

“Well I have a list of things I need to do. I am not sure. I know I will keep being the best person I can possibly be. I think that all people should do that. I hope I get to go to Fan Expo again. I really like going there. Mom, are we done now? I don’t want to answer any more questions – can I go now?”

Yes – thanks Alex. Happy New Year!

Over the last year and a half we have really struggled with trying to find supports and services for Alex to enter the job force. We know he still wants to learn more and heading back to school one day may still be an option. We also know he wants to start his own business someday and he assures us it will be amazing! “Mom, you and Dad can work out of my Toronto office and Zoe can work with me in New York City” Alex regularly tells us. His focus for now though has been trying to find his first part-time job. As Alex says, “I need a job now so I can have my own money for stuff and stop using the bank of mom and dad.” One thing we know for certain is that Alex wants to have independence – sometimes a little too much – but he wants to be self-sufficient. Just last week he stopped while helping his Dad in the yard to say “you know they pay people to do this type of work” To which his Dad said “yes they do”. Alex replied “so are you hiring?”

Through a referral from the Autism Job Club, Alex finished a training course at our local YMCA which helps connect young adults with work. We were told he was “entertaining” in the classes, especially when describing his top strengths as “excellent memory, superior dancing skills and food connoisseur”. There was also the need to intervene with an audit of his resume. We had to have a long discussion about how “being involved in the Pan Am Games” had to be more than just watching the event. Still he persevered and finished the 60 hour program which was an accomplishment in itself.

Then he began the job search. I can’t imagine the reaction from some store or shop owners when confronted with “Hi, excuse me; I was wondering if you are hiring? I’m autistic and I am looking for a job. I have a resume.” From all accounts, Alex told us most people were pleasantly surprised and gladly accepted his resume. Some seemed a little confused. He said one man told him he would hire someone with special needs as they “only call in sick if they are really sick”. To which Alex said, “Oh I would only call in sick if it was FanExpo weekend”.

Alex returned earlier this week from a day of “job hunting” to tell us about an impromptu interview he had at a local restaurant. The owner asked him about his qualifications. He said he paid attention to details. The owner asked him if he could provide an example to which Alex said “you know, like if I see someone putting salt on their food – I need to warn them about heart disease. It’s a killer these days.” He also was quite clear on letting potential employers know he couldn’t work on Saturday mornings because he had “YU GI OH”. An older store owner remarked “that sounds interesting, is that a martial arts type class?” To which Alex replied “no it’s a card game, I would invite you but it’s not really for old people like you.”

Fast forward to this past week when I received the best call. “Mom, guess what?” “What?” I replied. “I got it. I got a job!” The joy in Alex’s voice spoke volumes. While it may be a small, part-time job, it is a job for him. A responsibility and a positive step forward towards independence. It also reinforces why we need to ensure ongoing support for children with autism as they grow up and move into adulthood. Thank you to the restaurant that is willing to support young adults with autism! Now pass the salt!