WARRIOR MUM - WENDY HIRST'S JOURNEY

Autism, ADHD and Strokes. Loving our special needs child is easy, often it's getting the right support that's the uphill battle. Just imagine being Mum to three special needs children?
How does Wendy Hirst do it?
I'll let this amazing warrior mum tell you herself. 

Sovereign Mother of the year award

Wendy's Journey

"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

I had a baby brother, Wayne, who was 7 years younger than me, and life was great.           

Then, when I was 10, we went on holiday to Sicily to visit my maternal grandparents and my life changed forever. 

We were about 15 minutes from my nana’s village when out of nowhere a lorry appeared doing a u turn on the motorway. There were no central barriers and we hit that lorry head on. Our car was catapulted into a field at the side of the road. My brother, who was three years-old, was killed outright as he went straight through the wind screen, and so was my cousin and Granddad. My dad died two weeks later.

         

I woke up in a hospital that was very basically equipped. I saw my mum in the next bed but she wouldn’t speak to me. She blamed me for the accident because I changed my mind about a holiday I was going on and we all ended up going to Sicily.  

I looked around for the rest of my family.

Where were they? 

I was told my brother was in my nana’s village asleep, but of course that wasn’t true.  

Nobody would take me to find my dad and I couldn't understand the foreign language, so I went off alone through the hospital corridor to search for him. I could hardly walk with the pain from a fractured hip and I also had a head injury. It wasn’t a long corridor but it might as well have been 100 miles.

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 had my Italian nana and my English grandparents stayed with me most of the time. My brother was buried before I was out of hospital. My dad died just after I was sent home to recover at my Nana's house in the village. I found out my dad had died when my uncle came round early hours of the morning. I knew he had gone; I had a dream minutes before where he was sat in a tree looking down and said:

"I have to go now,

I will never leave you.

I always by your side." 

I was unable to attend my brother’s funeral, but my Father’s funeral was like something out of this world. My dad’s coffin was carried for a mile through the streets to the church as hundreds of Italians followed to pay their respects to someone they had never met.

After the funeral service his coffin was carried from the church to the cemetery with those same people following behind. I’d never witnessed anything like it. Once we reached the cemetery my dad was laid to rest in a grave next to my brother and Italian Granddad, who was also killed in the accident. A few years later my nana built a statue of Mary carrying Jesus over the three graves and put their photos in marble headstones. 

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. 

I was on sleeping tablets of some sort to try and stop the nightmares and the teachers were very understanding. However, my mother married within a year of my dad's passing and her new husband made it clear he did not want a ready-made family so I was shipped off to live with my grandparents. Shortly after I moved in with them we moved to a seaside town in Lincolnshire for a fresh start.

M. What kind of work did you do when you left school?

When I left school there weren’t that many job opportunities. I wanted to be a Nursery nurse and was a sunshine corner teacher (a church outreach) for a while. 

Me age 18

I love children and would play games and share bible stories with over a 100 of them on the beach during the summer. I also became a youth leader. Then I got the chance of going to a Bible school in Scotland and jumped at it. It was the first time I had ever left home and it was very daunting. I was the youngest there so they all used to look after me. While I was there I was picked to be a missionary in the Philippines but my Granddad thought I was too young and wouldn't let me go.

I left Bible College after a year. I worked in a local fruit shop for six months and met the owner of a care home who suggested I apply for a job with them. Little did I know I’d be a carer for the next 10 years, working with people with dementia and various mental dis-orders.

M. Was there any love on the horizon?  
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

  

I have four children. The three youngest have autism.   
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

Elyssia is 13 and your typical teen, full of attitude and teenage angst. She loves One Direction, especially Liam and Louis, and 80s music (It's not down to me listening to it all the time. Honest! LOL)
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. 

Jenna is 7 Jenna was a very routine orientated baby she didn't cope when things went wrong and would scream for hours on end. Luke and Jenna never slept and would be awake till 4am then suddenly go to sleep till 6 am and wake up full of beans.

  

Zak is three years-old. I knew as soon as Zak was born that something wasn't right. He likes routine, doesn't sleep and screams. He had a lot of problems when he was born. He was four weeks premature and couldn't maintain his body temperature. It was touch and go whether we would both survive as my blood pressure was extremely high and the medics couldn't control it. They couldn't get Zak warm until they put him skin to skin with me and he soon warmed up. 

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.

The afternoon was very interesting as we went through a questionnaire that delved into the children's behaviour and personality. It was something I have never sat down and thought about. I have always taken Luke and Jen for who they are, never judging them or looking down at them as society does. It certainly gave me food for thought and made me see the children’s quirks in a different light. It made me realize that Luke and Jen were so unique due to their quirks that this is what separates them for a neurotypical child. 

With Luke and Jen it’s not about hitting the major achievements and milestones that count; it’s the minor one’s. For instance how Jen is elated every time she writes a new letter. Or the fact that Luke loves the weather and sits for hours just watching the weather channel.   

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. 

I sometimes think the teachers sit down and say How can we make people’s lives difficult - even though life is difficult enough for them. Oh I know, let’s have a mid-week inset day. That will stir things up and make life stressful.

When my daughter’s school decided they would have an inset day, not at the end of the week, or the start of the week, which would have been more logical, but Right in the middle of the week, it made me realize how much routine controlled her. When she arrived home from school at 3.30 she was like a caged animal that suddenly went berserk and there was no calming her down. There was a constant barrage of screaming and throwing things and was so much more than a tantrum; it was a full blown meltdown. It was so upsetting to see this normally happy smiley girl snap and become this whirlwind of torment; so uncontrollable and inconsolable. It took five hours for her to eventually calm down. All this was due to the fact she didn’t go to school, have the usual routine of the day. 

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.

I started to write a blog to help me as a parent to children with autism/additional needs, just to help me get through the day. Some days autism and all its quirks seem to overwhelm me and take over my whole being and I feel I can’t cope. I noticed putting my feelings down helped me yet at the same time it was supporting others; people were commenting on my blog saying yes I know exactly how you feel.

My blog soon became not only a place to write my musings but support for other parents as well. It also became apparent that people who had never heard about autism were starting to read more about it.

My support, apart from my husband, is online. Through the media of Twitter, Facebook and blogging, I feel I am not alone. There are people in the cyber world who support me; are there with me every step of the way. They know - they understand what it is like. This is why I started #specialsaturday to help/support others in similar situations who know what it is like when you feel so stressed that your child has been screaming for hours on end and you can feel so isolated.

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.

I remember standing at the school gates and thinking

Why don’t the other parents talk to me anymore? 

Why do they stand so far away?

I saw them in their huddles all chatting away but they no longer included me in their conversations. 

What had changed? 

My son Luke used to make funny noises as I waited for my daughter to come out of school. I wasn’t sure why he made these noises but it explained why no one talked to me.

After incidents like that I can go home, switch on my computer and tell my friends around the world what happened. I’d immediately feel the love and support and most of all the understanding because many of my internet friends also have children on the spectrum and have had similar experiences. 

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? 

How much is too much?

They don’t tell you that bit do they? You have to find that out yourself.

I had my first stroke in April 2012. Everyone said that things would improve, that I would feel better and it was going to take time. It wasn’t until I had my MRI scan on my brain that the full extent of damage that the multiple mini strokes or TIA’s had caused as it showed part of my brain has died.

I recently had a heart operation to close a hole in my heart that I had since birth. It was only through talking to my cardioligist consultant that I realised the strokes were caused by this hole in the heart. I can’t walk very far as the strokes have robbed me of co-ordination and have left a significant weakness in my right side. So it has been suggested that I maybe have to think about getting a mobility scooter so I can get out and about. My husband has made adaptions where he can and has moved the outside decking as I couldn’t cope with the step down to the garden. So now I just walk straight on to the decking as it is right next to the door.

M. Do you have much support from the health service? 
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.

I feel at last people are listening to our pleas when we say we are not coping. We have also been referred for some more help and support; someone who is going to support the WHOLE family not just the children. I hope that as things change and I claw my life back that we will continue to go forward and have a good quality of life.

I am really looking forward to Christmas as last year was the first year in 7 years we were able to have a Christmas tree. Now for the first time ever we will be able to sit down and enjoy our Christmas meal as a family. It's things such as this I never take for granted. 

At the moment I am trying to get Zak, who has lots of sensory issues when it comes to food, to eat. At the moment he is living on special fortified milk but I want him to start trying new foods and textures. I think if he can sit with us while we are eating that he will join us for Christmas dinner.  

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.

No prejudice

No ignorance

That they could lead a perfectly happy life with no worries of how people will react to them.

I want them to lead as “normal” life as possible

Not to get upset and scream when the world around them becomes too much and they feel over powered.

For people to be more understanding and not Always think the kids are naughty when in fact they aren’t and unfortunately, can’t help the way they act.

I want people to be more understanding; yes, that’s what I want for Christmas.

M. Finally, tell us about Special Saturday

The idea behind this is to use Saturdays to spread awareness of the needs, feelings and accomplishments of children and adults with additional needs or autism. Members of Twitter are asked to make awareness posts on Saturdays using the tag #specialsaturday. It started because my daughter wasn't invited to a birthday party because she had special needs. The whole class was invited so it was ignorance at its worst. To highlight this kind of cruelty #specialsaturday was created to illustrate the need for awareness.

        The lovely Elyssia says – Give Autism a chance

I live with autism each and everyday as my 3 siblings all have autism.

People always run, back away when I or anyone else uses the word 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.

But, what people don’t realise is that they are the same as you and me. So next time you hear the word autism don’t back away. Remember how amazing they are despite the fact that they can’t cope in social situations. Give autism a chance you might learn something from it.

 
 

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