Do you ever wonder, why you?
Do you ever wish life had turned out different?
You love your child, accept them completely, but sometimes it’s all too much?
Today my friend Claire Hayes, of AutismparentSupport shares her story:
I had been on the path of personal self development since my early twenties and I had turned 40 by the time we had the diagnosis of autism for my second daughter. Surely, having a special needs child would be child’s play to someone who had taught personal transformation, who understood the relationship of mind to body, of limiting beliefs to behaviour?
Talk about a curve ball…
Once upon a time…
Once upon a time there was a young woman who had a lovely husband and adorable 2 year old daughter. They had moved up to the far North out of the Big City. It was all going to be perfect: fresh air, sea and mountains, good food and a like minded community. What could go wrong?
Well nothing actually. For as we know, in fairy stories as in life, there is always a moral to the story, so the test becomes the transformation.
A girl was born…
Actually, it wasn’t quite like that. For a start, I had a lovely husband and adorable daughter but the move changed everything. I became lost and disorientated. From being a Londoner with a professional track record and loads of friends and a lifetime of connections, I was cast off. I knew no-one. I was an incomer. Everyone was too busy to pick up on the loneliness of this new arrival. I sank quickly into depression.
I dwell on this, because my autistic daughter was conceived into this depression and despair.
Good fuel for the “It’s all my fault” mindtalk that caught me later….
A girl grew…
She was always strange, right from the moment she came out. She was born at home, at about 4.30am. My husband (and there is no blame here) went to bed to rest. I was still wide awake from the euphoria of giving birth, but even I couldn’t get my first born to playgroup! So I called my friend and went downstairs to the kitchen to help with breakfast. My friend obviously wanted to see the newborn, so she went upstairs to see my daughter whom I had left swaddled on our bed. “She’s not there!” my friend cried….”She must be, she’s only just been born! She can’t have gone anywhere!” I replied. I went upstairs and there she was, swaddled in white against the white sheets, and curiously “invisible”. I don’t know why my friend didn’t see her. I had left her in a really safe place far away from any overhanging covers. I even have the photos to prove it! Yet on some level she was invisible to my friend.
That’s why I know she came out autistic…
The mother couldn’t understand…
My daughter’s behaviour was strange, but only having one model of childhood (I had never really been around children before I became a mother) I wasn’t unduly worried. Because my daughter’s “strangeness” was not picked up and diagnosed by the professionals whose job it was, we labelled her a slow developer and waited …and waited….
These were pre-internet days. No Google. No putting in the symptoms and getting something back! Although it was very clear that something was “wrong”, we didn’t actually get a diagnosis until she was 8. In a way, it would have been easier if she had been more “severe”, as we would have had an earlier diagnosis.
But no diagnosis, no help.
No help inside ignorance is a pretty scary place to be.
Beginning to see the picture…
Gradually it all started getting into shape. The turning point came when I was working one summer in Greece and a fellow member of the teaching team had an autistic son. He was there with her, and there were so many parallels with my darling’s behaviour that the light bulb went on.
Back home, I asked for a test for autism and ta..da…easy as pie..Yes!
On the road…
Then I had something to get my teeth into. I did my best with research pre-internet and finally found a programme I could relate to. I ran a Son-Rise programme for 4 years, and the journey for my daughter to learn her new communication skills and flexibility and imagination and empathy was accompanied by my struggles with all sorts of issues of self-esteem, leadership, finances and so forth.
A baptism of self-growth demanded, (and gave back), so much.
But in all this my daughter was the sweetest girl imaginable.
She really turned into a violent, unpredictable creature from hell.
Two years of destruction, physical and emotional. It had all been going so well.
Well, they never said it was going to be easy…
The other side…
We got there, with help from everyone from therapists (for me) and doctors and acupuncturists (for my daughter).
We settled down. We found a beautiful Care Home for her. Places like gold dust. Funding? I used every means at my disposal to get that place for her, with funding. It worked.
For me, so far, that was the ultimate “test”. For it needed everything to be in place not only on the physical, but also, I believe, on the mental and emotional levels. Mindset and heartset.
Everything became very clear and focused, but also, as happens with life, the biggest obstacles came up.
It was like treading a tight rope, at any time I could fall, but I knew I had to get to the other side. I had to choose to see the obstacles as opportunities. A cliche I know, but cliches are born of truth and this was true for me. My daughter’s path was my path too.
Happily ever after?
Let’s see. At the moment it’s all good. But I have been on this path long enough to know it is never straightforward. At least for now it is a “breathing out” period…
So why am I telling you this?
Hope. That’s it. If you are feeling down, or confused, or overwhelmed, or isolated, there is hope.
We cannot predict the future for our children but we have every choice about how we tackle the present.
Claire Hayes 2011
Do you have a story to share?
I’ll be asking for submissions soon. Stay tuned!