Chapter 3 - Some Things that Didn't Work

There is no sure thing or “one size fits all” strategy.  Dealing with any toddler is a challenge, double it when raising one on the Spectrum.  It is important to come to terms with the fact that some things are not going to be successful.  Thinking we were acting out in our son’s best interests, we enrolled Aidan at a  local Music Conservatory class, “Musical 2’s and 3’s.”  We were open about his issues, but even the warning that the music was going to start was too much and we dropped out.  I don’t consider it a failure, we tried, but he still has his book and understands the musical note symbols.  Soccer was the same, complete disaster and two years after our “team sport experiment, ” Aidan announced to us, “ I hate soccer.”  

Exposing your Autistic child to activities that the average normal functioning child enjoys is not always going to work, but it is critical for them to be out in society.  As they get older, it is expected that they will willingly participate in society,  so early participation will only help them. Compare it to learning to swim, you don’t immediately jump off the diving board into the deep end.  Manoeuvring through life and understanding social nuances is not instinctive for both children and adults with Autism.  

For many parents, this is difficult, and your stomach will do flip-flops, but for all the unsuccessful attempts, there will be one that will succeed, like our trip to Jamaica.  That trip was not perfect, but he did really well, on his terms in the children’s area.  We made sure to avoid the Sesame Street characters (theme of the resort) -  people in costumes, continue to be a trigger for Aidan.  When we encountered “Big Bird” heading back to our room from the beach, the more upset Aidan got, the more “Big Bird” tried to console him.  The yellowed feathered giant, as kind as he was trying to be, just made my son more hysterical - I had to say very plainly, “Get away, you are making things worse.”  To be honest, my language was much more colourful.  Oversized walking and talking cartoon characters don’t follow the expected norm, and he has always been very wary of any mascot-like characters, but he loves dressing up in his own costumes.  Welcome to the Spectrum!

A bit from Chapter 4 - Siblings

I am a lucky woman. I have had three healthy pregnancies, and three gorgeous boys, all blonde haired and blue eyed.  Looking at baby pictures, I forget who is who, as they were all similar with their wispy hair and toothless grins.  There is an age range,  I have ten year gap between first and second - the third came quickly after the second (about 20 months later).  The best thing I ever did for Aidan was giving him an older and younger brother.  His older brother is the protector and the younger challenges him.  

I feel for my other two boys, having an Autistic brother is not easy at times.  Samuel, the oldest, would have his friends over and Aidan would flop and flip all over a few of his friends.  For a teenager, this is awkward.  He has moved away for college, and we made the road-trip all together with the U-haul, and when we returned home, Aidan suddenly became obsessed with Sesame Street.  Locating older episodes online and talking about how Samuel (his oldest brother), as a toddler loved Sesame Street.  It is true, his big brother was “weaned” on the “Sunny day” theme song. It is obvious that Aidan misses his big brother, but cannot articulate his feelings.  He is connecting with his big brother by channelling Oscar the Grouch and, his ultimate favourite, Cookie Monster.  My hope for Aidan is that one day that he can tell his big brother how much he loves him and missed him when he went away for school.

Owen, the youngest, is only one year behind Aidan at school.  They ride the same bus, go to the same school and share a play area.  Aidan’s Autism definitely affects Owen’s life. He deals with Aidan like most siblings close in age, very similar to my own experiences having an older brother only eighteen months apart, the usual “he’s touching me, looking at me” echo from the back-seat.  We had concerns about Owen at school, and the principal commented that Owen would just ignore Aidan’s outbursts at school, but like most other kids with siblings in the same school, that was to be expected, Autism or not.  

When Owen leaves the house, he always finds Aidan to say good-bye. When Samuel calls, often asking for cash, he always asks how his little brothers are and is particularly interested in Aidan’s latest achievements.   Samuel and Owen are both proud to be Aidan’s brothers.

Aidan’s Autism, has made them more understanding and empathetic to all of those with special needs.  

Chapter 1 - The Need

I love books and all the places that stock them: libraries, bookstores, waiting

rooms - the smell of a freshly cracked book is pure bliss for me. I am not into the

technology of the e-reader. I need two firm covers in both hands. Every opportunity I

have to explore new shelves of neatly arranged spines staring down at me, I peruse

the “Parenting” section to inspect the “latest & greatest” in the Autism world.

I have bought many, many books, creating my own “Autism” reference library in my home. While many offer support and stories of triumph or a detailed check-list of early signs and intervention techniques, I never found one that filled the practical needs. How to travel, how to toilet train, how to deal with a tantrum, how to deal with the public, with your child on the Spectrum?

While the following chapters will tell you our story of Autism, they will also give you the knowledge of what has worked for us and what has failed.

The terms I will use regularly will be “Spectrum” and “Autism.” Someone on the

spectrum has a diagnosis of “Autism Spectrum Disorder” or ASD and it varies. For

simplicity and understanding, I will use the two terms. My son is verbal and has a “mild

to moderate” diagnosis, so this may give some clarity to parent’s dealing with the same.

Not all of our experiences and suggestions will necessarily work for you, but my hope is that we all finish this book with a better sense of our children on the Spectrum and what they are trying to tell us.

The singularly most important aspect of parenting a child on the spectrum is to listen to

them. Whether they have words or not, they communicate, and they can, if we listen

carefully enough, tell us their needs.  It can be  compared to unscrambling a puzzle, but the pieces will eventually fall into place.

“I know my autism bothers people,” Aidan, age 9

This quote, from my son, came written in his daily communication book, that he directed to the Educational Assistant. It floored me, his level of understanding was huge! I never anticipated that he was aware of how his disability  might affect  those around him. This sparked  the idea of encouraging him to write his observations, his feelings, his frustrations, and we purchased a purple notebook (his favourite colour). Aidan writes in it, and throughout this book, we will share his work with you. Some are whimsical stories, others are notes to myself or my husband while away on business trips - most importantly they help us to understand him. The notebook represents his needs and wants, it is his guide to us, his caregivers.

Aidan's Career Plan!

Aidan did this independently at school, it is full of dreams and aspirations, just like many of us at age ten.  I wanted to be a ballet dancer and an actress.  Autism doesn't stop our children from wondering what they will be when they, "grow up." I think it makes their job selections a little more interesting.

5,649!

Aidan's oral has inspired us all.  It motivates me to sit and write, when I really don't feel like it.
It gives me patience, when I feel that I have known left.
It allows me to reflect and try to understand my son, who has so many hurdles to face.

And it gives me hope.

Enjoy and let's continue sharing and beat the current 5,649 views!

http://www.youtube.com/watch?v=m2JilgXvvx8

Why I write

Why tackle a book project? The Purple Notebook, is a continuous and evolving project and this excerpt is my closing paragraph. Cannot wait to share the complete, finished version with all of you!

Growing up I always wanted to be a writer and as a teen would write silly, love struck epic poems.  I dabbled here and there, and managed to get some journalism assignments, but I stopped writing after I had my Autistic son.   My professional and voluntary career positions have always incorporated writing and I have earned a reputation as a good grant writer, I have the ability to tell the cause well, and usually get the money.  Adam’s story needs to be told, he is doing it through his notes to me.  He is helping me achieve my dreams, and I can only hope to help him to reach his.