From Chapter 7 - Your Life, Your Relationship with Autism

Guilt is an emotion you face when you parent a special needs child.  A friend admired Aidan’s thoughts and said that she loved how his mind worked.  I felt the complete opposite - I could not see his gifts, I was too busy managing his life.  You can start to resent the time, money and compromise.  Priorities shift when you have a special needs child to care for and that can undermine your relationships, with your spouse, your friends, your family.  

As a couple, you both need to take turns going to appointments. I felt that I was the only one chauffeuring, until my husband reminded me that is was he who attended all the early intervention programs.  You forget and you get wrapped up in your own schedule.  I have learned to communicate when I need a break, and my spouse is more aware of my mood and knowing when I need a rest.

You cannot let the “Autism” rule your life.  It has an undeniable impact, however, if you spend each waking moment obsessed with the next book, newest treatment, latest theory, you won’t have anything to offer your child.  Taking care of your own needs is critical, for any parent, special needs child or normal functioning.  A happy parent, does make for a happy family - it is as simple as that.

I have Autism

I communicate differently

Sometimes I need to be reminded to focus

Sometimes I wander, so keep an eye on my at recess.

I need help getting organized for home

I need someone to escort me to my bus

Aidan, grade 4, “Things about me” assignment

No Elephants Please!

Dear parents, followers and friends,

After a quick night away minus children and dogs with my partner, I did my "mom" duty and purchased Aidan a small gift from our trip.  Trying to wean him off preschool material and Winnie-the-Pooh literature, I picked a book (to add to his library) and my selection,  An Elephant in the Garden by Michael Morpurgo was not met with smiles, just screams, loud ones.  

So we talked about it today - we addressed the issue and our wonderful worker told a great social story about a gift she received once and didn't particularly like.  Thanks for the note Aidan and I hope the elephants make you smile one day!


Dear Mom,

I'm sorry for screaming after having mixed feelings about my new book.  Next time even if I don't like the present, I'll still think it's a great book.  I could say it's a good book, and say thank you.   

Love, Aidan

Toddlers and Trains

It was during Aidan’s three year old check-up that we really became concerned that there were some issues and milestones that he was not achieving, those suspicions came from both - parents and doctor.  We may overlook our importance, as parents and caregivers, but our daily interactions gives us more insight and knowledge than anyone else.  My husband and I were both suspicious something was up as Aidan neared three, but did not rush to books and the internet - we went to our doctor.  The current rate of Autism according to the Centre for Disease Control is estimated at 1 out of every 88 live births.  

http://www.cdc.gov/ncbddd/autism/data.html

ASD is five times more common in boys (1 in 54) and the rates for girls is (1 in 252).  

Those sheer numbers alone will create unnecessary reactions - so don’t become alarmed without a thorough examination by a professional - not an internet check-list.

As an emerging toddler, Aidan could do some remarkable things.  Reading from age two; he could recite signs, billboards, movie listings, preschool books, newspaper headlines - absolutely shocking.  One day in line at a local grocery store check-out, a mother marvelled at his ability, “How did you teach him to do that?” I shrugged and explained that both my husband and I are readers.  Yes, the first sign that something was not quite normal.  When Aidan was in grade four and had to complete a Social Studies project titled, “About Me.”  Under the heading, “My favourite things” he wrote, books.  We own a small library.  Attempts to edit his collection have been fruitless, as he would always return from an outing with a new copy of the exact same book we had lugged off to a donation bin.

We have always encouraged and fed his love of books.  A trip to the library or bookstore is always filled with excitement.  Road-trips are not complete, without a trip to the local bookseller, and Aidan often plans out where the best book store is, in any city, town, or village that we may visit.  The larger, urban, book stores, with play areas, provided Aidan with his introduction to “Thomas the Tank” and the wonders of Percy and Gordon.  I have no malice towards Thomas or the author, Reverend Awdry, however the connection of children on the spectrum and their love of this little train is indisputable.  

The trains are reliable, they go around the tracks, they do not challenge any sensory issues 
(not too loud or fast) - all the elements an Autistic child needs.  Aidan’s love for books and Thomas is simple to decipher, they never change.  Open a book, push a train along the track - it is not dynamic, nothing to going to pop out or create a loud noise.  Now, just because your toddler loves Thomas (as he or she should) does not make an argument to get them on the list for assessment.  

We continually, during those toddler years,  fed Aidan’s autistic tendencies, completely unaware of how we were tailoring our choices to suit his needs.  Our lives, with him, were not the easiest.  His sensitivity to crowds and noises would make it difficult in social situations, but we learned the signs when a tantrum or outburst would be surfacing.  He still came out to parties, to restaurants, to celebrations - not always successfully, but I think that he manages better now because of his early exposure to a healthy dose of social life.  We still didn’t know it was Autism, but we instinctively knew what he could and could not handle.

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.  

Lost in the Hundred Acre Wood

My son, Aidan, who is the subject of this blog and forth-coming book has always been fascinated, no, I would say obsessed by Winnie-the-Pooh and the entire cast of characters from the Hundred Acre Wood.

This post was discovered by my partner, Aidan's father, and perhaps we could all use some "Pooh" wisdom in our lives.  Enjoy!

http://www.huffingtonpost.com/2013/08/07/inspirational-quotes-winnie-the-pooh_n_3715089.html?ir=Parents&ref=topbar

Aidan's Apology

Hi, Mom!

I'm sorry for demanding and saying,"Now!" today. I promise never to demand again and I'll always ask nicely since I've been practicing

that with Margaret. Hope you forgive me!

Love, Aidan

Autism or not, summer break is hard on everyone!  The constant strains of, "I'm hungry, I'm thirsty, I'm bored" ring consistently.  A critical part of my forthcoming book, are Aidan's words.  He has graduated from writing pencil to paper in his "Purple Notebook" and sends me email messages now.  

This is his apology from yesterday.

Have a great day my Autism "partners-in-crime"

xo Lisa

End of Life

Last night, Aidan and I addressed a group of third year university students, along with a "fellow Autism Mom & Advocate."  It was great for these budding professionals to see and hear what Autism looks like up close.

Later, over wine (mom's need their vices) my Autism "partner-in-crime" stated that we never mentioned "End of Life" planning.  I nodded and agreed.

What happens to our Autistic offspring once we are gone.  It has given me sleepless nights on more than one occasion.  Is it fair to put that pressure on their siblings?  Aidan's oldest brother, my dear Samuel, never faltered and said, "I will always be his wing-man."  Wow.

The few glasses shared, on my back deck, in all appearances, just seemed like a regular chat among ladies. 

 We weren't discussing fashion trends, work or vacations - 

the focus was our children after we are gone.

In my first manuscript draft of my book, I never discussed this topic - well, time to add a chapter.

Autism Awesomeness!

Autism does not mean, "I can't."  Children on the spectrum, can achieve great things, and enjoy  simple pleasures.  Check out some of Aidan's adventures, and he has many more to share. 

As parents and caregivers, we must stay positive, we owe it to our kids dealing with this spectrum that has so many unknowns.

Bits of Wisdom Worth Sharing!

http://www.positivityblog.com/index.php/2010/02/15/the-very-simple-guide-to-chilling-out/

The Positivity Blog has a great bits of wisdom for all of us that have ASD in our lives - please check it out!

Lisa

Aidan's Story about Zoe

This week we lost our dear companion of 12 years, our yellow lab Zoe.  She loved us and we loved her and this is the story that Aidan wrote about Zoe in his "Purple Notebook."  Aidan is 10 years old and has Autism.  He amazes us everyday and Zoe would of liked the story.

Just Imagine - on Autism ON site!

Link to Just Imagine on Autism ON site!

http://www.autismontario.com/client/aso/ao.nsf/(photolookup)/BD5AEEE02CAAA39485257B65004C1770?OpenDocument

Happy Mother's Day all!

xo Lisa

Just Imagine

Just imagine, you feel the first kicks of the baby in your body and you feel immediate love and hope. Just imagine, he is born and is perfect - all fingers and toes to be kissed. Just imagine, that little person that you created just doesn’t seem quite right. Just imagine, you go through a battery of specialists and tests. Just imagine, you get an Autism diagnosis and you don`t know what that means or where to go.

Imagine

As parents of children on the `Spectrum`we have experienced that same sense of loss and hopelessness. We have no point of reference, there isn`t an instruction manual. One thing for certain is that as parents we are their advocates, their teachers, their guides.

Imagine

Working together with therapists, teachers, educational assistants to achieve what you never could imagine. A moment, where your child has a voice and creates awareness to his community and beyond. Aidan`s Speech - `What it`s Like to have Autism`began as an optional oral assignment and grew. As of May 7,2013 his youtube video has garnered 4,937 views.

Just imagine - that one moment, taped by a regular camera, at a school presentation, touched thousands. He spread his message further by hitting the `big time`on the front page of the local paper and was guest speaker at his city`s City Council meeting.

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

Instruction Manual Required

I received a phone call early this morning from a friend to ask a favour.  She received news from a friend concerning a mother who just received dual Autism diagnosis' for both of her sons, under the age of five.  This mother was, as we all are, shocked and looking for help.

Could they pass on my number?  Most certainly.  There needs to be a better process for parents to receive much needed and critical information upon initial diagnosis.  The Waterloo region in Ontario does it well.  Check out www.autismspectrumconnection.com  it includes a "check-list" for those parents and caregivers to guide them through the first phases of Autism and what services and supports are available. 

The world of ASD has created a community, and like all communities, we need to support each other to succeed. 

Be kind,
xo Lisa

The Need

The Purple Notebook is the title of a book that I am writing.  It relates my experiences parenting my son, Aidan who is Autistic.  The notebook represents Aidan's words, which are more insightful than any observations that I can share, about living with Autism.  I will share bits and pieces with you, while I draft my manuscript. 

Aidan shared this to his Educational Assistant, "I know my Autism bothers people," last year at age nine. 

This book will shed some practical light to the current foggy condition of this spectrum disorder, and give both caregivers, families and children hope.


More to come,

Lisa