This weeks Faces For Autism post is close to our Founder James Baker, as it was sent in by his cousin. This story is basically what started Bikes For Autism!
"I'm sure you have heard all you can about our family as you are a big part of it! But in our house there are three faces of autism. Every time another diagnosis was revealed, it was a devastating set back. Our son Jude who is now turning ten was diagnosed at age three. After a years of trying to have assessments and referrals we finally got his diagnosis of high functioning autism. It was bitter sweet to finally have an answer. There was a huge shame in hearing this, immediately I thought how can I fix him, what did I do? The tremendous amount of guilt you can feel as a mother never goes away, it may get better, but to me it will always be there. He was our first baby, we didn't know signs and friends and family would hint he was not the same... but really we all did not know.
Time after time he received toys he didn't know how to play with, he missed markers in development, speech was delayed, flapping, spinning, obsessions, dangerous behaviours, meltdowns you name it we went through it. My heart was ripped out of my chest every time he screamed for me when I left him at intervention or preschool, we all knew it was the right thing to do and now I am glad I was strong enough to do that. My heart sunk every time he was picked on at the playground and every time his cousins surpassed him that were the same age. Just as we figured out a way intervention would work for us and him our second son Nohl who is now 8, was also diagnosed with PDDNOS (pervasive development disorder not otherwise specified.) To talk about the day he was diagnosed is very hard, talk about denial! I just took him to his assessment because they were tracking his development due to Jude's diagnosis so I was alone and figured no big deal in and out. When they came back to tell me he was on spectrum, I was so confused.
I kept asking "So he has autism? How is that possible?"
I called my husband and told him, I was sobbing.
"What are we going to do
Dear god I can't handle this?
How can I work?
How can we afford it?"
It took a couple of hours to calm down enough to drive home, and another three days of crying, more guilt more, blame on myself... But what else can you do but pick up and move on... Hence Bikers For Autism and Osoyoos Autism Behavioural Centre. With your help we opened a little intervention room and remained open for five years. My kids got the best treatment and we could remain right here in town.
The last story of autism in our household was not too shocking... Going through all this intervention, learning the behaviours, recognizing the signs I began to really question myself.
"Wow I did that,"
"Wow I struggled with this,"
"Hmmm that looks very familiar."
I really had to look at myself and take the time I needed to deal with everything. Having two boys with autism and running their intervention programs while working was very hard on me. It wasn't until I finally broke down and said "I need some help," that I was able to take the time and find some. I saw a counsellor and psychiatrist for about a year and still do. It was a little embarrassing at first because I didn't know what diagnosis I would come out with. Due to the stress of my children I developed anxiety and panic attacks, these were just some behaviours that I have been coping with for 39 years.
In the end I was diagnosed with Aspergers Syndrome.
The news was again bitter sweet, I knew something was there, finally I was was right. But then it hit me, all of those memories of when I was little, how I struggled, why I was different, how I found it hard to make friends, school work, it was a flood of emotion. I could not handle, I sat in the shower one morning and could not get out. I cried for three hours. I did not take my kids to school that day. I began telling my family and some friends. To my surprise, the only person it really mattered to was me. They loved me just the same, some thought it's been 39 years it's too late, what did it really matter to know. Some questioned the diagnosis as I have learned to cope so well they didn't really understand it. How can someone raise kids, have a job, drive a car ... ? I get it, I didn't understand either and still don't really understand myself. But all I can say is, we love each other. My family loves us, my husband and I have been through so much, we are so thankful for everything. Happiness and health is all we need for now.
This year I have decided to take a break from autism and just focus on being a family! Because in the end autism does not define us, it's just a part of us.
This is our story... I hope it helps another family know we understand what they are going through.
Love yah cuzzy
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