When 10-year-old Holly Salmon was diagnosed with severe autism the effect on her family was dramatic.
It pulled the family apart – dad Rob and mum Jo split up and after a three-and-a-half year break are they back together, having worked to rebuild their family and their lives.
The moving story of the Salmon family is proof of just how difficult family life can be when autism goes undiagnosed.
Jo, 39, from Caerphilly, admits her family went through “dark times” when her daughter Holly, now 14, was diagnosed with Asperger’s Syndrome some four years ago.
The strain of the diagnosis saw Rob, 46, leave after feeling he could not cope.
“He could not get his head around the diagnosis. He really struggled to understand Holly and her condition,” said Jo.
The mum-of-two first noticed symptoms such as obsessive behaviour when Holly was a baby.
“She had a milk bottle and she always had to hold it with her fingers covering certain letters, which I thought was odd,” said Jo.
“She was a very unsettled baby and she used to cry all the time, but I did not realise it was autism,” she added.
Jo also observed her daughter had sensory issues from a young age when she was unable to wear certain fabrics.
“Holly feels sensations acutely and some clothes are painful for her to wear. At one stage, she could only wear one T-shirt and one pair of joggers and we had to buy her five identical sets. School uniform was a nightmare,” added Jo.
Her daughter also struggled with the social side of school.
“Like many children with autism, she is shy and introverted and she was bullied at school for being different. She was vulnerable and could not even tell me about it, because she found it difficult to talk about her feelings. She became a shell of a person and had to miss three months of school.”
The diagnosis came late for Holly, after a specialist told the family there was nothing wrong with the six-year-old and described her as a “manipulative drama queen.”
“I was absolutely furious that my daughter had been denied the help she so evidently needed,” said Jo, who was prompted to research the condition herself following the visit.
She had compared Holly’s behaviour to her brother Ben, who is a year younger than his sister.
“Ben could always play with other children, but if Holly met someone new, she would always have to ask me what to say to them,” said Jo.
When Holly was finally diagnosed with Asperger’s Syndrome in 2009, her mum wished she could turn back the clock.
“When I had the diagnosis in my hands, I wished that she was just naughty,” said Jo.
Holly said: “When my mum told me I had autism, I didn’t want to know. I didn’t want to have a disability, or to know what was wrong with me.”
But four years on, Holly and her family are doing well.
“Rob and I split up for three-and-a-half years, but we remained good friends and now we’re giving it another chance. The family unit is much happier with him around,” said Jo.
She added she now has a better understanding of Holly’s condition.
“Initially, I knew she experienced emotions differently and I was worried she could not love us, but now I realise she loves us unconditionally, even though her thought processes are different,” said Jo.
With the help of a special educational needs coordinator, Holly, who is now in Year 8, is thriving at school and hopes to become a make-up artist for hit TV show Doctor Who.
“Between the ages of seven and nine, I thought she would never let me get a brush through her hair, but now she wants to be a make-up artist,” said Jo.
“A few years ago, I thought she would never be able to sit her GCSEs. It just goes to show with the right support, children with autism can achieve anything.”
She added: “Holly does have some very dark days, but she also has some very bright days and I am so proud of her.
“I would love to be in her head for a day, but no longer than that. It is a brilliant mind, but a very tormented mind.”
Holly said: “I would really like for people to know that even though kids like me have autism, we are human, we’re not weird and we’re not freaks. We’re just different. I think being different and thinking differently is cool.”
Jo and Holly work hard to promote awareness of autism and this week, launched Wales’ first Autism Heroes Awards to coincide with World Autism Awareness Day.
* To find out more, visit www.autismheroesawards.co.uk
I met Jo Salmon on Facebook. On World Autism Day Holly gave a speech and I asked if I could share it with everyone and here it is:
So….. why is it important for mainstream schools to understand Autism?
Well…in my humble opinion, Autism is complicated and we’re all
different!! Life is so much easier when you’re in a school that can meet
your needs and who understands you as a person. This is where
special schools have the edge.
A Teaching Assistant once said to my mum, “I don’t need to understand
Autism, I just need to understand Holly” Well I think she was
wrong…and that you need to understand both me as a person and my
autism and how it affects me.
A school will need to understand what my triggers for a meltdown are.
They need to help me when I’m in meltdown mode. The SENco at my
school has sat down with my mum and they’ve looked at ways to make
my school day easier for me. They looked at the areas where I struggle
and have put strategies in place. So for example leaving the lesson a
few minutes earlier to avoid the crowds, leaving a little earlier from the
lesson just before lunch and having a pass so that I didn’t need to queue
for lunch. I’m also let out a little earlier at the end of the school day to
escape the stampede. I’ve been given a room that I can use at break
and lunch time where I can go with my friends. This is also good as I
used to get bullied if I spent lunchtime on the yard. I now take
sandwiches and eat these in the room that they’ve given me to avoid the
canteen as it was such a sensory overload for me after a morning in
lessons. It’s not rocket science is it? So why do some mainstream
schools get it so wrong? Many schools get it spot on and work so hard
provide the learning environment that a child with ASD needs and the
Extra Mile Award category just goes to show how many amazing
Teachers, teaching assistants, head teachers and schools there are
here in Wales.
A school day for me is so intense and it always overloads me and I
always get a headache at the end of the day. My school understand this
and when I feel myself getting stressed I’m allowed to leave class and
take my work to a dedicated room. All this makes it possible for me to
stay in school. My PE lessons got too much for me. I couldn’t keep up
with the rest of the class and often felt humiliated. My SENco has now
arranged for me to do a PE lesson with a TA in the gym which is so
much easier. Pressure off.
My school understand that I will need time out and have made
arrangements for this. My teachers are aware of my condition and most
of them are amazing with me and will often ask the SENco things about
me or if I would be able to cope with a certain piece of work.
We can’t flex guys, so you need to do that bit for us in schools. If you
want to include us in mainstream school then you need to be equipped
to deal with me. Simples!
Like I say, it’s not rocket science, Lots and lots of schools are doing it
and are listening to parents for guidance…time for the others who aren’t
doing it to catch up eh?
It doesn’t take long to hand out a sheet of information listing my
strengths, weaknesses, difficulties, triggers and calming strategies to
hand to staff. Small inexpensive things like this can make the world of
difference to how we feel in school.