My father warned me just after Kenzie was born that now that I had a child of my own, time would fly by - and it has.

On Sunday, Mackenzie will turn sixteen.   Even with the warning, the years have flown by faster than I thought possible.

In the past few weeks my heart has been flooded with memories.  In my minds eye I can see a little girl, skin speckled with mosquito bites making mud pies in the backyard.  Kenzie always had dirt under her fingernails, and her had was forever a tangled mass.  I remember brushing hair, the back so curly and fine that it was impossible to get the tangles out without hurting her - and I tried so hard not to hurt her. 

I also remember how cautious she was when she attempted a new skill, like her first time crossing the street by herself.  We had given her instructions to make sure she looked both directions.  Kenzie looked to the left, she looked to the right - no cars, she looked to the left, she looked to the right - no cars she did this over and over until she was confident that it was safe to cross.  And then a car passed by.  So she had to start the process all over again.  The poor thing stood on that corner a long time that day.  But she didn't give up, she didn't ask for help.

Another time Kenzie showed determination was when she taught herself to ride a bike.  At seven, John and I could see that she was no where near ready for the training wheels to come off, she just didn't have the balance.  But when she asked her Dad to take off her training wheels, John decided to give her a chance.  Kenzie tried for weeks to get the hang of it.  Over and over she would peddle a few strokes, then loose her balance and have to steady herself with her feet.  The neighbourhood all watched her try and fail, try and fail.  One neighbour came to me and suggested that we just put the wheels back on.  I didn't want to do that to her.  Because even though it was hard, she wasn't giving up and I wasn't about to give up on her either.  When she eventually did ride, I couldn't have been prouder.  It didn't come easy for her and she didn't give up.

Witnessing my daughter grow up has been one of the great gifts in my life.  Kenzie has a strength that I admire.  Because of her I want to be a better woman myself.   

Sixteen.  It's a big year.  She has been studying her driver's handbook, and has her first job.  At sixteen, she could meet the love of her life (I did) or have her heart broken for the first time.  This week, she brought home paper work for a SHSM (Specialized High School Major) in Health and Wellness.  Kenzie is planning long term goals that aren't so long term anymore.  I feel like she is on the cusp of something great and this will be the year she will soar.

I think that Kenzie believes this herself.  She has choosen One Little Word for 2012 as well.  FORWARD.  Seems appropiate.

Happy Birthday Kiddo, love you. xoxo

Slowly The Story Will Be Told

It's been a long time since I've posted.  Part of the problem is that for the last few months the only thing I was capable of was living life, rather than writing about it.  The other problem for me, was that I felt like I wrote myself into a corner.

When I started writing about Josh and our autism journey, I thought that one post, maybe two would tell our story.  I was wrong.  To tell our story, I need to use so many more words than will fit neatly into one or two posts.  To tell our story, I need to be open in a way that is a little scary.  And then I got stuck. 

Keep checking back, because slowly, the rest of the story will be told.  But for today, for right now, I'm not quite ready.

Through the Spectrum.

Chapter Two - getting help.

I didn't cry for long. Even if Josh wasn't aware of what was going on, my daughter Kenzie who was almost five at the time was very in tune to my emotions. Besides trying to be sensitive to Kenzie - I'm not a sit down and cry kind of girl. I'm a fixer and a fighter. Even if the situation wasn't fixable, I could learn and research about the beast who was taking over my son.

Information regarding autism was difficult for me to find. I had the newspaper article, and the few lines from my What to Expect - The Toddler Years book. Medical books had little more than what I had already read. Also, money was tight, so I didn't have access to a computer or the Internet. My father who lived on the east coast sent me a package of papers that he had printed out. I read everything I could get my hands on over and over again.

I made made a phone call to our local chapter of the Autism society. Twelve years ago, when I called the society, autism wasn't on the radar like it is today. The Autism Society was a small group of parents who had come together to help their children. Cathy, the president of the society ran the chapter out of her home. Speaking with another mom both comforted me and terrified me. She threw around so many acronyms that I felt like I was being served a bowl of alphabet soup - EA, SERT, ABA my head was spinning. Cathy was a wealth of knowledge, her son was school aged so she had experience working with the regions preschool services and the school board. But the best advice that Cathy gave me was in order to be the best advocate for my son, I needed to get real about Josh's needs. Our natural inclination as parents is to brag about our kids accomplishments. She told me that when advocating, yes be proud of Josh's milestones, but put more emphasis on where he still needed growth. She also warned me that the wait list for services was long.

Her warning proved to be true. It was a long wait. I think the first appointment was months later, at McMaster Children's Hospital for a hearing test. My sister in law drove us, and it was a surreal experience. The three of us were put in a sound proof room. I had never been in a room without sound before -the quiet was deafening. The way the test was carried out, speakers were in each of the corners of the room. The technicians in the sound booth would call out Josh's name from one of the four speakers. The natural response is to turn your head in the direction of the sound. They cautioned us not to move our heads so to be sure we were testing Josh's hearing, not his curiosity. Several times, in several ways they called out to Josh. Josh didn't respond at all, he didn't turn his head.

I looked at my sister in law. Oddly, I was happy that there was nothing from Josh. In my mind, his lack of response meant that he had a hearing problem. An easy fix with a hearing aid or worse case scenario, we could teach his sign language. A hearing problem seemed like a cake walk compared to autism.

Next, the technician chimed a series of bells in different tones. This time, there was a response from Josh. He looked up each and every time a bell rang. After the test was completed, I met with the technician. She explained to me that Josh had perfect hearing. How could that be? He never turned his head when they called his name. She explained to me that the chimes were all tones of the human voice. If Josh could hear the chimes, he could hear us.

Oh.

She suggested that we start speech and language services with the region. And if we were already on the wait list that we look into getting private speech and language services.

I didn't know how we were going to pay for it, but as soon as I got home I cracked open the yellow pages looked for a speech therapist. Preferably one who specialized in working with children with autism.

to be continued...

when our lives changed

October is Autism Awareness month in Ontario.  Today, I am sharing the beginning of our story...

It was at my nephew's birthday party that it became undeniable that Josh was somehow different.  At the time, terms like Aspergers, autism or nerotypical were foreign to me.  But seeing Josh - even at the age of two, almost three - with a group of his peers, I knew something wasn't right.  That day at the party, the other kids played and interacted with varying levels of success.  However Josh did not; and I could see that it wasn't that he wouldn't, it was that he COULD NOT.  Socially, even at this young age, I could see he was lost and terrified.  He cried and threw at fit, and neither John or I could comfort him.  Besides being embarrassed, I was heartbroken.  My sweet son was lost and afraid and there wasn't anything I could do to help him - he wouldn't, couldn't let us in.

There were clues before the party.  As they say hindsight is 20/20, and looking back there were signs right from babyhood.  He would scream and panic at bath time - trying to bath him was like bathing a cat.  He was happy to sit all by himself for hours at a time.  Just sitting - staring off into space.  When he finally started crawling, he would crawl off to the toy corner and look at the toys.  He didn't play with the toys, just looked at them - occasionally he would line them up.  And if someone would come to interact with him he would have a melt down.  Most of the time he was in his own world. 
 
After we arrived home from my nephew's party I was emotionally exhausted.  Once the kids were in bed, I turned to John and asked if he was feeling what I was feeling.
"Do you really think there isn't a problem?" my eyes were pleading with him to understand what I was saying.
"Maybe there is." he said.
That night we had a long talk.  John admitted that he was afraid.  Afraid of what might be wrong.  Afraid that if we went to professionals for help, that we would look like incompetent parents, and our kids would be taken away.  We agreed that we give Josh a little more time.  And if there still wasn't improvement, would start by taking Josh to our trusted family doctor.

The next morning, I woke up feeling refreshed, hopeful even.  I was not in this alone.  We could do this together.  Together, we could pull Josh out of his world and back to our family.  I convinced myself that maybe John was right - all Josh needed was a little more time.

It's odd how life unfolds.  During this wait and see period, the local newspaper wrote an article on Autism.  I read it and it struck a chord.  The article struck a chord with others as well.  Two ladies I worked with, my mother-in-law and my own mom all called and suggested I read it.

I didn't wait any longer.  I called our family doctor and got Josh an appointment.  At the appointment I answered questions about Josh's development thus far.  I explained that it wasn't just his development delay that I was concerned about.  I told him that I realized that all kids develop at their own pace, but what I saw with Josh was different.  Odd.  I asked if he thought it might be a hearing problem.  Our doctor agreed that we should have a hearing test done.  As well he was going to send us to a developmental pediatrician.   I glanced at the chicken scratch notes Dr.C was jotting down.  PDD?  Phew, I thought to myself - he doesn't think it's autism. 

When I got home, I looked up PDD in my What to Expect - The Toddler Years, my heart sank.  There wasn't an entry for PDD, but it was mentioned under the autism entry. 

Autism- What is it?  A syndrome (a group of symptoms) rather that a clinical disease or condition.  Autism is the most common form of Pervasive Developmental Disorder or PDD.

My head was spinning.  Is PDD autism?  Are there other PDD's?  I couldn't just sit around, waiting for appointments.  I needed answers.  I found myself on the phone with the region's  intake services.  When the intake worker on the other end asked how she could help I stammered, "umm, could you tell me the difference between autism and PDD?"

This kind angel woman stayed on the line with me for over an hour.  She explained to me that PDD was an umbrella term.  All the developmental disorders stemmed off under the PDD umbrella.  Autism wasn't the only developmental disorder, PDD-NOS, Aspergers and Rhett's were some of the others.  She put me on wait lists for speech and language services, a behavioural screening, preschool  services and special services at home.  When I hung up the phone, I was drenched in sweat.  I looked at Josh, who was zoned out in his own little word.  He was oblivious to what was going on, but I wasn't.  I sat there and and cried.

Finding Our Groove :: an update

We are a couple of weeks into the school year, and dare I say that we are finding our groove. 

Charlie is now a full time student.  In our school board, junior kindergarten and senior kindergarten are full day, every other day programs.  Going every day without a break in between has been an adjustment for The Little Man and his class mates.  Seriously?  You've got to be kidding me?  And, Again?  Were some of the responses that the moms and I heard as we would wake our kids up in the morning.  I'm pretty sure that Charlie has accepted this as his new normal.  His only hope now, is for a snow day.  Yes, one and a half weeks into school and he is praying for snow. 

I fully expected a phone call from the high school on the first day about Josh.  Instead, it was Kenzie texting me from the office.  Apparently, she had chosen the wrong business course and had to make adjustments to her timetable.  Kenzie is not the kind of kid who likes being in the office for any reason even if it's only a timetable change.  Things worked out and she enrolled into another business course.  It's a much better fit - the course content focuses on how business works.  Speaking of The Kid and the business world, she is beginning to look for a part time job.  Another milestone - time keeps marching on, nothing stays the same. 

As for Josh, karma couldn't have been kinder to him on the first day.  True, he left the house alone.  But somewhere in between our house and the school, a few girls (the pretty, popular girls) called out to him and they all walked together.  SCORE one for the little guy.

Josh's favorite subject is drama.  In drama, his words and actions are scripted for him.  For a guy who gets tounge tied, and can't find the right words or actions in everyday life, drama is a safe place to be.   His first journal entry for drama made tears come to my eyes;

"Today is a beginning.  I'm trying to have fun and I think I will achieve it.  Drama is one of the apples of learning but this one is golden.  I went with drama because I hope to learn something, to face my fears and to make my start wonderful.  I would definitely go in tenth grade drama - honest truth."

I'm certain that there will be lots of bumps along the way to next June.  But we've begun.  And the start is always the hardest part.

First Day

I’m trying to tell you about my life,

My tongue is twisted, more dead than alive,

My feeling have always been betrayed

I was born a little damaged man

Look what they’ve made.

Don’t you find,

That it’s lonely.

The corridor - you walk there alone

Life is a game you tried.

If life is a game, you’re tired.



Velvet Morning by The Verve.



Josh left today for high school. My tears came in waves last night. I’ve spent the better part of the last year focusing on making Josh’s transition to high school smooth. Working with the school so that resources and support would be put in place for him. So much planning and preparing. The tears came last night when I realized that none of it would help him on the first day. I realized that he will have to walk alone. I could do nothing more to help him.

His tears came this morning. I gave him a hug, and told him it was okay, that crying now was good because it meant that he was getting it out here at home in a safe spot. He calmed down and went back to his morning routine.

Just before it was time for Josh to leave he and I went out back to take a picture for his scrapbook. After our mini photo shoot, he turned to me, sad and scared and said, “I have no one to walk with.” I don’t know where I found the strength, but I didn’t cry. Instead I told him he would be fine, that I believed in him and that he wouldn’t be alone. Everyone was nervous today.

Josh and I went back inside to say good bye to the rest of the family. Kenzie gave him her words of wisdom - you have to talk to someone, don’t wait for people to talk to you. John gave his fatherly pep talk - just remember, everyone feels a little anxious, everyone will be thinking the same thing as you.

What is Josh thinking about? Gravy. One of his favourite things. That is what will get him through today. Gravy. There is a good possibility he will blurt out gravy.
I don’t spend a lot of time playing the blame game. Josh is in the autism spectrum. There is nothing I can do about it, and I don’t even know if I would try. It is part of who he is.   Part of what makes him sweet, kind, trusting and truthful.

But today, I blame myself.   I can’t fix autism. I cant fix the way the world sees him. I can’t fix the education system. I can’t give him friends. I can’t make this better for him. Today, as his mother I feel like I’ve let him down. That I passed on a combination of DNA that makes his life, this day harder for him.

The best I can do today is wait.   And while I am waiting, I will make a roast beef dinner, complete with gravy.

a letter to my mother

This post is an excerpt from the love letter I gave my mom on her birthday:

Dear Mom, Today as we celebrate you I wanted to let you know how important you are in my life. Happy Birthday. Just like it is hard for me to believe that my kids are growing up, it's hard for me to believe that you have reached this milestone. You have traveled sixty five times around the sun, and with each passing you have learned a little bit more about yourself, with each time around you have grown more beautiful.

There are so many moments in my life where I felt your love and pride. Moments where you made me feel like I was the most important person in the world. And today, I am wondering did I leave you with the same feeling? Do you know how much I love you, how proud I am of you?

I am proud that you let your emotions flow so freely. I am proud that you are the kind of lady who  laughs so hard she pees her pants.  When something sad touches your heart, you cry just as easily.  You live out loud.  Experiencing your life to its fullest.   

I admire how courageously adapted to the stages of your life.  Whether the changes of your life were new and exciting or challenging and difficult, you have met them with an open heart.  Always remaining optimistic about what the future may hold.

I am thirty seven years old.  An adult.  Gone is the mouthy child who thought she knew it all.  In her place stands a woman who still looks to her mother as a compass when making decisions.  A sail when she needs encouragement.  And an anchor when she needs comfort and stability.  Thank-you for these gifts.    I love you so much, xoxo.





Growing Into Himself.

We are in the home stretch.

The last days of school, before summer vacation.

I've been so busy that all of a sudden it hit me.  Every year summer breezes in, bringing  a flood of emotion for me.  I think about how much the kids have learned, how far they have come since September.  June is the time of year I am so proud my heart could burst. 

This year is a big one.  Kenzie is writing exams, finishing her first year of high school.  Charlie is finishing Kindergarten - moving on to Grade one and full time enrollment.  And Josh is graduating grade eight.

Josh is heading off to high school.

I remember years ago, getting Josh ready for school, and getting the school ready for Josh.   Our first meeting with the school was the June before he started Kindergarten.  John and I walked in the conference room, and were met with a room full of faces.  The principal, the vice principal,  the special education teacher, a representative from the Halton autism team, his nursery school teacher, and us.  The janitor wasn't able to make it.

I made it through that first meeting without having an emotional breakdown.  But rest assured, there have been a couple since.  Over the years, I have learned (the hard way) that regardless of how frustrated, angry or afraid I may be at these meetings, anything other than breaking out in mild sweat takes away from our credibility as Josh's advocates.   

Watching Josh grow up is like watching a child grow up in slow motion.  He needed speech therapy to learn how to talk.  A physical therapist came to the school to teach him balance and coordination, not that he would use these skills.  For a long time Josh was pulled out of gym class so that he could receive one on one time with the special education teacher learning literacy skills.  As he grew older, time was set aside for Josh to have basic social skills taught to him.  He learned and mastered the incredible five point scale.  A tool to help him identify his triggers and moods, so that his melt downs at school would almost disappear. 

Once Josh reached the middle school years, the stakes got higher.  Kids who tolerated, and were even friendly to him started to pull away as they fought for their own footing on the popularity ladder.  Josh struggled with feelings of depression as he tried so hard to learn how to fit in.  He calls this time in his life as "the blues." 

To help him gain the teen social skills he needed, I got to work, trying to teach the skills that the rest of us take for granted.  I made him a set of Pokemon social skills cards.  Each card had one of his favorite Pokemon characters with a social skill he could learn from that character.  For example the Charizard card: Charizard's fire burns hotter if he has experienced harsh battles.  Be like Charizard and remember - some days are harsh, but they will make you stronger.  And from the Jynx card: Jynx's cries sound like human speech, but no one can understand it. - sometimes people don't understand why you cry.  Try using your words to resolve your conflicts.  By the way, I recently found out the man who created Pokemon is on the autism spectrum. 

 Together we worked through The Social Success workbook for Teens.  We read  The Rules of Life and The Social Skill Picture Book for High School and Beyond.  He learned skills like how to start conversations, how to know when someone isn't interested in your story, how to call a friend,  and which urinal is the best to choose in a public washroom (not the one RIGHT beside the other dude.)

Every gain Josh has made he has worked for. Hard.  Over the years, he has had some awesome teachers and educational assistants that have worked along side of Josh and our family.  Thank you to the teachers who have made a difference in Josh's life.  Each teacher had a slightly different approach, each one sparking new paths of knowledge in Josh. 

I have hope and I am optimistic that in high school the teachers will see the same sweet boy who is struggling to fit in and understand.  I have hope that the teachers in his new school will also make a difference. 
Hope.  It's kind of a scary thing, because hope offers no guarantees.

I have seen how far he has come. I have watched him grow.  Like I said before, raising a child on the spectrum is like raising a child in slow motion.   So even without a guarantee, I know at the end of the next four years he will become a kind, capable, independent young man.  He may have to work harder than his peers, "the blues" may return, but I know he is on his way.  Growing into himself at his own pace.

Isn`t that all any of us as parents can hope for?

Happy Mother's Day ~ from You Tube