I was reminded today of how Alex’s perspective on some things is actually truly insightful.

Don’t get me wrong, people on the spectrum struggle with many challenges in many different ways and on many different levels.  A reminder that is echoed all too often by someone asking me “what the hell is wrong with him?” when Alex has yelled out at the top of his lungs in public “then I will just have to let it go!” This is usually when he is fixated on something that cannot happen or when his schedule is disrupted. For years we have worked on helping him deal with sudden changes in schedules or disruptions due to things or people you can’t control. He has learned to deal with this himself through a LOT of work but there are still times were he reaches a critical point and needs help to deescalate. Over the years he has developed a lot of visual cues to help.

It seems lately that everyone is so angry. There is a lot of venomous hate and anger out there and it now seems somewhat acceptable to post it on social media – almost making it acceptable. The very thing we have worked on with Alex – how to stay calm, how to breath, how to avoid that melt down point, now seems unfortunately labelled as “funny” and “entertaining”. There is nothing entertaining about anyone having a meltdown.  Yet we seem consumed by this in the media. Of course there is no lack of angry “Karen” references now to these types of incidents. Even Alex has said to me “hey mom, don’t be a Karen” when I have yelled in the car over someone cutting me off while driving”.

Alex and I were talking about this recently as we witnessed a man screaming at a store clerk because they lost his order. Once the man left the store Alex told me “he’s not a Karen, he just needs to get out of the mud”. I asked him what he meant. He replied “people get stuck in the mud – just muddy people. They look bad but they can’t help it once they are in it all they know is mud – so they sit in it and throw it at others. It’s not healthy. Better to stay out of the mud”.

As I thought about his analogy, it occurred to me how insightful that was – on so many levels – likely a visual someone gave him maybe in school or in his behaviour therapy to deal with his own challenges of not reaching that boiling point. Even not getting stuck or fixated on negative stuff or negative media.

So my advice from Alex for 2023, stay positive and stay out of the mud. There are better places to be and go.

Happy New Year!

It has been almost a year since my last post. I thought I would share a few “funny” moments and a reality check.

Several years ago when Alex would have been about 10, we looked after someone’s dog over the Christmas break while they went on vacation. At that time we had a large unfinished basement area where the kids would play. The visiting dog had been down there and had an “accident” which I cleaned up and said “well, he must be nervous”. With the second accident I recall saying (jokingly) “well little buddy, one more of these and you need to start packing your bags”.  Alex of course must have heard this and took note – literally of course.

A few years later we were preparing to move and going through things stored in the basement. I came across a large tin of Lincoln Logs which the kids used to play with when they were younger. For those who don’t know what they are, they are basically a set of wooden building blocks but shaped so you can built little log cabins (very cool). I remember my husband saying “hey the neighbours little kids would love those – leave them to the side and I will take them over”. About a week later, just before taking them over, I thought I would double check to see if all the pieces were in the bin and proceeded to open the lid. I think I got knocked back a few feet from the smell. As I emptied the contents on the floor – let’s just say there were a few decomposing “logs” of a very different colour and a lot of dried up paper towel. I could not figure out how “poop” ever made its way into the bin? I proceeded to ask Alex and his sister if they had any idea how on earth what appeared to be “poop” got into the Lincoln Log bin. Alex was very calm and methodical with his response. “Well mom, I realized that the little dog would not make it back to his house alive if you sent him ‘packing’ and I decided to save his life by hiding his poop. You should be proud of me”.  “Yes Alex that was very thoughtful but why hide them in the Lincoln Log tin – why did you not throw them in the garbage or for that matter flush them away?” I asked. “Oh well, I figured you might hear or see that so I was discreet” replied Alex. “You always tell me to be ‘discreet’ because it means to be careful with one’s speech or actions to avoid causing more problems”. “Yes it does Alex, thank you” I said knowing this concept of discreetness would continue to be a challenge.

When Alex was a bit older, I think 13 or 14, he was fortunate to attend a great program in the summer for young people on the spectrum that offered a weekly summer camp that included overnight camping.  The program was run out of a Conservation Area north of where we used to live. I remember he really loved it and if we ever were driving by the area on our way to visit family he would see it and say “hey that’s where I went to camp”. One time, however, he said “hey that is where there was a bear”. My husband and I both paused and looked at each other and said “Bear?” I then said “Alex you have never mentioned a bear before – are you sure? I think the councillors would have mentioned that”. This is when it took an unexpected turn. “Well they thought it was a bear” said Alex. “We went for a hike in the morning and came across a really big poop and I said hey look at that – it’s from a bear. Everyone gathered around it and started poking it with sticks” The counsellors told us not to poke it and to just keep walking. I said I really thought it was from a bear because it was big and we should not hike in the woods where there are bears. The counsellors said there were no bears and to keep going.”

Then Alex started to laugh a lot. “Alex what is so funny?” “Well it was me” he said laughing even louder now, “I pooped on the trail. It was so funny, they were so scared.” “What?” I exclaimed. “Why would you do that outside? Were there not washrooms or outhouses?” “Yes there were mom, but I got up in the night with my flashlight and walked a few steps into to the woods to go – it was a lot closer and avoided waking anyone up. So when they started poking it I just went along with it – I used my discretion” he said still laughing. At this point my only response was “well Alex please don’t do that again – please use the restroom – no discretion there”.

Alex loves to walk and we often head out on long walks to get in his “steps”. He sticks to the same route most times and sometimes he stops to grab a snack or a drink. A few years ago we were on a walk and passing a local church when Alex said “hi John!” to a man coming out of the side building. “Hello” said the man. I said “Alex how you know that person?” He replied “oh he is the janitor, John. He’s a Blue Jays fan and has a son like me”. It never ceases to amaze me how Alex can remember things about people. “What? When did you meet him?” I asked. “Oh one day I was coming back from a walk and I had a really bad feeling in my stomach. There was no way I would make it home.” Now I kind of knew what was coming – the discretion talk – or at least I was thought it would be. “So what did you do?” I said. “Well, I went into the church and asked if I could use the washroom. John was mopping the floor and said yes be quick and don’t bother anyone”. After I was done I had a flushing problem, I didn’t want to bother anyone so I went out to find a plunger on my own. I passed a room full of people and stopped to ask them if they knew where the plungers were because I had plugged up the toilet. They laughed – well not all of them – some looked angry. So I just decided to leave and on the way out I apologized to John. That is when he said ‘it’s okay young man I understand. I have a son like you – maybe not as talkative but I understand’. He then smiled and said ‘see you soon’. I thought he was nice and if I see him I always say hi and he says hi to me – that is when I found out he’s a Blue Jays fan”. I reflected on that to realize how fortunate we were in that situation that someone like John understood Alex.

I was thinking back on some of the things Alex has said or done that have made us or others laugh or cry and also reflected on how, in the wrong context, those statements or actions could have resulted in a very different situation. We have experienced many situations where people have not been understanding which has led to some really unfortunate circumstances. Alex has been removed from places and in some cases banned and not permitted to return. It seems what we believe were harmless actions or words, albeit inappropriate and for which he has apologized, have been seen as highly offensive and unacceptable to others.

I do understand peoples’ reactions – we are all human – but still wonder how it benefits anyone to marginalize people on the spectrum and not look to ways to make changes and improvements to be more inclusive and understanding.  Recently I was appalled to read about a young man with autism tazered by police as he sat in his underwear playing in the leaves in someone’s yard. I thought to myself how Alex could easily again end up in a situation where his actions were not seen as funny or even unusual and the fear that people just don’t understand or know what to do. Nothing, however is an excuse for the excessive use of force in a non-threatening situation and there needs to be far better training by police and better awareness by everyone to avoid such terrible actions.

My hope is that people will take the time to be more aware, more tolerant, more understanding. Maybe shake their heads and say “okay?” instead of responding with anger and intolerance. As Alex always tells me when he hears the phrase “killing me with kindness”. “Mom, kindness never really killed anyone, right?” Right.

It has been awhile since I last posted a blog. I would use the “I have been too busy” excuse but that would simply imply that other things are more important and that is not the case. The main reason is deciding which story to tell – there have been a few! I have chosen to highlight the importance of having good neighbours when you have an adult son with autism. We have truly been blessed with great neighbours over the years who have taken the time to get to know and understand Alex. In some past blogs, I have highlighted some funny storeys involving some great neighbours. The comedic drama continues!

Alex appears to be in a good place these days. He is happy, less anxious, and less stressed. He is still working on appropriate behaviours in public and his independence skills. He has had some great opportunities to volunteer this past year which he seems to enjoy and at which he appears to do a good job. He has also shown a heightened interest in all things Comicon, Con Bravo, Fan Expo and Toy Con. He looks forward to these events for months before hand.

Now costume decisions prior to these events can become quite a dilemma. Alex creates hybrid characters, or for that matter, just makes up characters, which combine any number of features: army fatigues, a WWE t-shirt and a Pokémon or anime hat. The latest costume involved knee pads, elbow pads, a Che Guevara hat, a black vest, and face make-up to resemble a zombie. According to Alex, “people will know who I am Mom – it’s all about originality”. I just smile and work on my zombie scar creations (I may have missed my calling as a make-up artist).

The latest costume also involved a police sheriff’s badge and handcuffs. Alex insisted on getting the more “authentic” looking ones from the costume store. With ConBravo approaching on Sunday, Friday night became Alex’s dress rehearsal. I had just left for a surprise party when I got a call. “Mom, it’s me Alex. Don’t get mad but I have done something kind of dumb”. “What is kind of dumb Alex?” I replied. “Well, I thought I would check out my new handcuffs, you know, make sure they work, and I accidentally handcuffed myself.  Can you please come home immediately?” “Well not immediately Alex, I am in a room full of people about to yell surprise – give me five minutes. I will call you back”. “Okay – maybe I will make my way over to the neighbours – they can get me out of this pickle. “

Well, that’s what they did and none too soon as Alex claimed that his blood supply was close to cutting off. According to Alex “they saved my life”. As my neighbour replied afterwards, after I profusely thanked him, “Yes we were a bit surprised when he showed up in handcuffs. We told him he’s no Houdini! Always happy to help.”

Fast forward to the next Sunday, when Vern and I were headed out to a soccer match and Alex asked “hey can I get pizza for dinner?” “No Alex, we have lots of leftovers for dinner that you can heat up. You don’t need to get pizza.” “Okay – well enjoy your match”. We were gone about an hour when we got a phone call from our neighbour. “Hey guys, no big deal, but just wanted to let you know that Alex just called me – did not want me to tell you guys – that he had to get to the mall by 6 pm because he had a date.” “A date?” I said with astonishment. I looked at Vern and said “do you know anything about Alex having a date?” Vern’s response was just as surprising “a date? No”. Our neighbour explained “I just thought I should let you guys know, as it seemed a bit sketchy. He was really upset that he was going to be late if he walked so asked me if I could drop him off. I said no problem but that he should let you guys know and he said he would. I am just calling to check. “ “Well he has not called us yet. This should be interesting. Thanks we really appreciate the call” we replied.

On the way home from the match we called Alex. He said everything was fine. We asked him about his “date”. He said he didn’t want to talk about it – it was a long story. I said we could chat when we got home. Then we got a second call from our neighbour. “Hi again guys, just wanted to let you know Alex called me back about ½ an hour after I dropped him off. Told me he was really upset that his date stood him up and he was stuck all alone with the pizza he ordered for them. He was about to walk home and wondered if I could pick him up because he was pretty upset. I told him I wouldn’t mind. I mean, I felt so bad for him he seemed pretty sad.” “Thanks we appreciate it – we will talk to Alex when we get home” I said.

Then the real story came to light. It seems Alex loves pizza more than love itself. You see after I told him he should not be calling the neighbours to drive him around and he should be letting us know about “dates” since that is a big deal, he admitted there was no “date”. He just really wanted a pizza and knew we had said no. He figured he would make up a date, then pretend he got stood up, buy his pizza and get a ride home.  “It seemed like a good plan at the time Mom, too bad I got busted. Maybe I should think about going into acting. Seems I was very believable to the neighbours. I will apologize to them.”

Never a dull day, never a dull character – even one who will fake a date for the love of pizza! Thank you to all the great neighbours who have shared in the lighter side of autism.