Mother’s Day just passed which is always a wonderful day to celebrate and thank moms for all they do. For moms who have autistic children, their children are not always able to express their love in the same way as other children but we know they love us and they often show their love in amazing ways. Sometimes it is a big smile or a hug or simply a calm stare. There are ways Alex has chosen to show his affection, however, that have left me with a puzzled smile, often laughing but in the end, making me love Alex for who he is even more.

Back when credit card companies actually checked for large purchases, I received a call one afternoon from my bank inquiring about my credit card use. “Have you made any significant online purchases in the last 2 days?” was the question. “No” was my response. I then proceeded to check my purse and found the card in its usual spot. “Well madam, we have a number of online charges to Lego and before we authorize them we just want to be sure it was you.”

“How much Lego? “ I asked. “Well let’s see, there are two separate amounts, $1,249.78 and $2,342.38”. “Okay, that is a lot of Lego”, I replied with a very concerned voice. It turns out there were 4 tickets for two days and hotel accommodation in Billund, Legoland in Denmark, and about $1,200 worth of Lego, inclusive of the Death Star which at the time was well over $400. Of course it was Alex. The best response of course was when I asked him about it. “Oh, mom” his response began, “Now you have gone and ruined one of your surprise Christmas presents. I guess that means we won’t be going. Oh well”. I still don’t know if my Christmas present was the Death Star or the trip.

A few years later, I think it would have been around the time Alex was just starting high school, I received a letter in the mail from an American credit card company addressed to Jhonny Alex George. It read “IMPORTANT DOCUMENTS INSIDE”. Well the last time I checked there were no Jhonnys in our family. I was going to “return to sender” but I thought I would check with Vern, my husband, first.

As we were talking about it, Vern said “I have no idea what that is about”. Suddenly a voice said, “I do”. Alex then proceeded to tell us that he had spoken to a very nice woman on the phone who asked him some questions and then said something to the effect of “well Mr. George, we would be happy to send that off to you”. Both Vern and I looked at Alex and then I proceeded to open the envelope. It was a brand new MasterCard with a letter stating where Mr. Jhonny needed to call to activate his new card.

It seemed like hours but we finally connected with a manager at the credit card company in an attempt to explain that the card needed to be cancelled and somehow they had sent our 14-year-old autistic son a credit card. The manager was actually adamant that we let Alex keep the card which we found very irritating. He said, “ Well our records show he is a PhD student doing research and he has a significant grant”. I glared at Alex who was listening in on the call. “Yes, well that is what I will have when I get to university” Alex said. “When I start doing my research on theme parks, I will need a credit card. And I will have to fly you out to visit me in New York City when I open my business there”. Having heard this the manager apologized and agreed to cancel the card.

Alex never fails to “surprise” us and make us laugh and cry with his creative antics. I would never change that about him, it makes him who he is. One day we will go to Legoland. Perhaps on Mother’s Day after he finishes his PhD in theme parks and we can celebrate!

April 2^nd of every year is now World Autism Awareness Day. I don’t think when Alex was first diagnosed this day existed (that was over 20 years ago). Now every year it seems to get more and more recognition and media attention. That is a really good thing.

The more people know, the more they understand. Sometimes autism awareness is spread through a simple reply such as “sorry my son does not mean to be disrespectful but he is autistic and he does not have the same ‘filter’ we have when it comes to social situations. He states what he is thinking.” I cannot tell you how many times I have said that to people when Alex has loudly stated his observations. In some ways it gives me an opportunity to leap into my Autism 101 speech and people generally say, “Oh yes I have a friend whose cousin has autism” or “Oh, kind of like the kid on Parenthood?”

“Please someone put that baby in a box” is one of the harsher statements that Alex has come out with in a crowded restaurant when a baby was crying. He has sensory issues with certain sounds. I left out the Autism 101 speech in that scenario as those parents had enough stress with everyone staring. A few years earlier, Alex and I were at a crowded community centre and there was a rather big guy standing in front of a vending machine jiggling change in his pocket. Alex yelled “Mom, tell that big fat guy to stop that noise in his pocket!”

“Nice costume. How did you get wrinkles that deep in your mask?” is another classic stated to an older lady who lived on our street at Halloween, as we were trick-or-treating. She was a gem though as she just laughed and smiled and waved him off. “Those look like French baguettes!” was another interesting observation yelled out very loudly, which actually had us all laughing, as Alex pointed to a woman who was bending down to collect shells at the beach in Mexico (remembering that several woman choose not to wear tops on the beach there). Thankfully she just looked up and grinned and we all agreed she did not speak English.

Often times Alex’s literal observations are his way of clarifying what he believes is fact but something we would never do as it may “offend” someone. Alex once said to a young waiter who was Asian, and had his name displayed on his nametag, “Alfred is not a Chinese name. Why is that your name? There was an Alfred on Batman. Did your parents like Batman?” I was horrified at first and getting ready with my standard statement but the waiter just smiled and replied, “No I don’t think they did but actually I never asked them, maybe I should”.

There are countless times Alex has asked people “why?” or “what is that?” or made statements that are based on his association with visual images and stereotypes (if you haven’t already read the blog post about the bikers in the beer store please do). He once asked an older woman who was wearing a Germany t-shirt, “Did you meet Hitler during the war?” Unfortunately, many of these situations are not funny and definitely not the “lighter side of autism”. We also cannot always be there to respond or give the Autism 101 speech. As an adult now, Alex needs to work harder than ever on his social skills and behaviour and hope that he can self advocate if he gets himself into a difficult situation based on something he has said or done.

The more we spread awareness, the more we spread understanding and the better things can be for the Alexes out there.

This story was a difficult one to write. I am not sure there is a “lighter” side to it but it is real and intended to reflect that there are things we can never “fix”. What we can do is learn how to best work with what is broken.

 

When Alex’s sister Zoe turned 10 she got a gecko for her birthday. Yes, a lizard. And yes, it had to eat live crickets. Even typing this I cringe, as I of course was the feeder of the gecko. Alex became fascinated with the gecko. He began to read all about geckos and would proudly tell us random facts about their habitats and lifecycles.

 

The gecko lived in a terrarium which was located on top of a desk in our spare room. Arizona, as he/she was named, really did not do much but lay on a piece of driftwood or sleep inside a plastic cave about the size of a tissue box. Zoe had drawn up a chart of when the gecko was to be fed, according to the “Facts about Gecko” book, and I would proceed to shake the live crickets into the terrarium on feeding day. Alex would often sit and stare at Arizona for hours. He would explain to it things like the evolution of its adhesive toe pads or that it was “okay to eat your skin when you shed”.

 

A few days had gone by and Arizona had not moved from out of the cave and no crickets had been consumed. Zoe asked me if I thought Arizona was okay. “Of course,” I said, “Arizona is just resting”. Alex piped up and said, “No mom, it is regenerating”. Of course I did not realize what he was talking about until I discovered Arizona’s tail wrapped in a tissue beside the terrarium. I then pulled a lifeless, tailless Arizona from the cave. “Alex,” I asked in a stern voice, “do you know how Arizona’s tail came off?” “Yes,” was the answer from Alex. Rather than go into all the details let’s just say as tragic as this was for Zoe, it became even more tragic for Alex. He could not understand why what he had done was wrong and why the book he read, “Facts about Geckos”, could be wrong. “Why did it not grow back Mom? Why did the book say it would and even had pictures showing how it would and it didn’t? The book said the tails come off all the time – like our toenails – and they just grow back and it doesn’t hurt them. Why did it not just grow back?” Of course, I didn’t know why. All I knew was that Zoe hated her brother at that moment, the gecko needed a pet funeral, and I had to deal with Alex continuing to question me about why “it” did not grow back. And of course, I had to tell Alex that what he did was wrong.

 

A few weeks later at Alex’s regular check in with his doctor (amazing woman who I will blog about later), she asked whether there was anything specific we wanted to discuss. Alex piped up and inquired, “Why did I get in trouble for removing Zoe’s gecko’s tail? The book I read said they lose their tails all the time and it doesn’t hurt. The book said it would regenerate after it came off but it didn’t and the gecko died. ” The doctor looked at me with a “can you help here mom?” look. I filled in the background details for context.

 

She then began to explain in some detail to Alex that while scientific facts are facts and they are true, there are always some differences in the genetic make-up of animals that predispose them to be different. Just like people, not everyone heals the same way or reacts the same way to situations and experiences both physical and emotional. She asked Alex if he was sorry for what he had done and did he understand what sorry meant? He replied, “ Yes, I am sorry I did it because the gecko couldn’t grow its tail back. I think you want me to say I shouldn’t have done it. I know it made my sister sad because she was crying. That is what people do when they are sad. Maybe my sister can have a therapy session with you to make her feel better. They should put warning labels on geckos whose tails cannot grow back and then people will know not to remove the tails and then they won’t upset their sisters. Can we go now?”

 

Rest in peace Arizona.

 

For many years we have celebrated Thanksgiving dinner at our house. We have loved hosting everyone and it has always been easier for Alex to be in his own environment.

For no real reason that I can remember, it became somewhat of a tradition for Alex to say grace before dinner. I think because he seemed to like to do it and for many years he was quite good at it. It was a great way for him to express himself in a social setting. In the earlier years, when he was about 8 or 9, he would begin by thanking everyone for coming and then thank God for the dinner and that was about it. We would all say “Amen” and smile and be so proud that he was even at the table with us as this was always a struggle.

By the time Alex turned 12, his grace had turned into more of a speech. He would again begin by thanking everyone for coming and then begin thanking God for numerous things and often go off on a tangent saying things like “it is sad for the turkey that was killed by the farmer. I hope he didn’t suffer a long drawn out death and let us pray that God is taking care of the turkey’s family.” By this time, someone, usually my mother, would interrupt and sternly say, “Thank you Alex that’s enough. Amen.”

In the last few years, the trend has seemed to be to turn to me to say grace and I think I know why. When Alex was 16, he said his last grace, although he may have sneaked a Christmas grace in a few times since then. We had all sat down to enjoy dinner when my dad said “okay Alex can you say grace?” Much to my mom’s annoyed look and reminder to “be appropriate.” Well this was an invitation, as it often is, for Alex to become creative.

“Dear God”, he began. “Thank you for this nice dinner. I pray for all my family to be healthy and happy. And I pray that I you will help me meet the beautiful Asian girl in my dreams soon so that I can have s…” “THANK YOU ALEX THAT IS ENOUGH. AMEN,” said my mother. Most of us were trying very hard to conceal the laughter with our faces buried in our napkins. “Sorry,” said Alex. “It won’t happen again.”

Thank you God for Alex and, when it happens again, please forgive me for laughing, again.