How does Wendy Hirst do it?
I'll let this amazing warrior mum tell you herself.
Sovereign Mother of the year award
"This last 18 months I felt as if I had my life as I knew it, taken away from me. The strokes have robbed me so much of my previous life. Now after months of being in a very dark and dank place, I feel as though I am slowly clawing my life back. It’s going to be a very long journey but if I take it one day at a time I will get there."
M. Please tell us about where you were born and a bit about your childhood.
I was born in Nuneaton in Warwickshire and had a very happy childhood. I had an Italian mother and an English father.
|Me age 3 with Mum and Dad|
|Me age 9|
Then, when I was 10, we went on holiday to Sicily to visit my maternal grandparents and my life changed forever.
I looked around for the rest of my family.
I was told my brother was in my nana’s village asleep, but of course that wasn’t true.
|My brother Wayne|
I slowly opened a door the door and certainly wasn’t ready for what I was about to see. It was the most heart-breaking sight. My dad, who I loved so much, was laid there, unable to move. He looked like a neglected rag doll. I stood there and cried.
He couldn’t speak, hug, or even acknowledge me.
I remained beside him in complete shock, just staring. My dad now looked like a stranger, even though there was something familiar about those eyes, that at one time used to sparkle. Now those eyes were dull and virtually lifeless. I stayed with him as long as I could, then, I walked slowly back to my room, the pain in my hip getting worse with each step. I fell to the floor and was unable to get up. Someone came and carried me back to my bed.
"I have to go now,
M. That must have been a lonely journey back to England?
My dad’s parents returned to England before Christmas, having stayed as long as they possibly could and my mum, Italian nana and I, flew back home at the end of January 1980. It was snowing and the plane was diverted, so when we landed we had to get a coach back to the midlands. I was so glad to be home but very sad that my dad and brother weren't there with us. Walking into the house was a very emotional experience and for years I expected my dad and brother to be stood at the door.
My school teacher’s were fantastic when I returned to school a month later. It took me a while to adjust, not only because of losing Dad, my brother Wayne, Granddad and cousin, but also the amount of schooling I had missed.
M. What kind of work did you do when you left school?
|Me age 18|
I met someone and married but unfortunately that marriage didn't work out and we split up just after my beautiful daughter, Elyssia, was born, but fate is a wonderful thing and I met my second husband soon after and in an online chat-room of all places. We've just celebrated our 10th wedding anniversary.
|Our wedding 2003|
When I first embarked on this journey of autism I never realised it would change my whole way of thinking and life as I knew it. I learned not to take anything for granted; learned to think outside the box. You see the three youngest also have global delay development, hypermobility and gene 16p 11.2 microduplication. Only three people in every ten thousand have Gene 16p 11.2. I have the three children with it, which unfortunately has a knock on effect with our eldest, Elyssia.
|Luke, Elyssia, Zak and Jenna|
|Elyssia and Jenna|
She sits and reads for hours and loves the Harry Potter books and films. Her favourite author is J K Rowling and Jacqueline Wilson. She sometimes plays X-box, usually Harry Potter, Minecraft, and likes games on the computer, such at Temple Run and puzzle solving games.
Despite this she is unable to be a 'typical' teen because so much consideration has to be given to her three siblings varying complex needs. She is unable to have friends round, knows we can't go out on the spur of the moment. It takes weeks of planning ahead to go out for the day.
Luke is 8. I didn't realise that there was something wrong with Luke. I thought he was just being stubborn. But when he stopped talking at 18 months, alarm bells started ringing. He lived in a silent world just starting into space for hours unaware of the world around him. It wasn't until he was three years-old that he received a diagnosis of autism. This opened a whole new world to me.
Zak was diagnosed with autism when he was 18 months old. The specialist that saw Luke when he was first diagnosed also saw Zak and said that he was worst than Luke was at that age. They all know the family very well.
A couple of years ago Luke and Jen took part into research of Gene 16p 11.2 microduplication. We don’t know much about this Gene 16p 11.2 except that 3 people in every 10,000 have it and it affects the way they take information in, the sleep and eating patterns etc. Because I have three children with this gene, I was curious to know more about it.
I was nervous about meeting the researchers as I wasn’t sure how the kids would react because usually they don’t like strangers in the house. After a few minutes of meeting the two researchers S and J, all my worries vanished as the kids took a liking to them straight away.
M. Do the children go to a mainstream school and if so how do you feel their needs are being met?
At the moment this is playing a big part in our life. Luke goes to a special school and is doing extremely well due to smaller groups and one-to-one staff support. Jenna goes mainstream and not coping . We have tried to get her statement of educational needs since she was in reception. Her previous school helped as much as possible working with her in a small group, make social stories etc . She just moved up to middle school. In an ideal world I would have loved for her to have started at special school. Without a statement its not possible.
M. How much difference has internet access made to your life?
As the years passed my passion to learn more about autism/additional needs grew. I knew it wasn’t easy to go out, or attend the playgroups and it soon became very apparent that there wasn’t much support for families with children on the spectrum. We have a local group of special needs parents that meet up but due to transport and attending appointments I was unable to go.
Coming to terms with having three children with autism, though they are dearly loved, was devastating at first and what didn't help was watching people I considered friends or acquaintances withdraw from my life.
M. You've not been well, have you?
I have heard so many times that the human body can only cope with so much. What happens when you reach that point?
We have a lovely GP who is so pro-active with the family and has done so much for us. He has currently referred me to OT and Physio because of my mobility issues. I can't walk very far, manage the stairs or get into the bath. We live in a housing association town house so when I get this referral they will put a walk in shower for us. We were lucky to get this house, it was brand new and overlooks the sea love it.
M. What would YOU like for Christmas?
The one thing and my dearest wish that no money can buy, is for the kids to be accepted for who they are.
I want people to be more understanding; yes, that’s what I want for Christmas.
I live with autism each and everyday as my 3 siblings all have autism.
People that have autism in fact have a real gift, they can be intelligent in different topics.
I mean my little brother Luke who is only 8 years old already knows more about computers and aeroplanes, even more than I do or ever will.
My sister Jen is really good at history and can remember and recite facts of history she was told months ago.
Then there is Zak who is 3 years old he can use an ipad himself and know what he likes.
Autism means that their brain is wired differently and they see things from another perspective.
Autism and Camping