Hello!  I’m Holly

Hello! I’m Holly

 

Jo Salmon, left, set up the Autism Heroes Awards after her daughter Holly was diagnosed with the condition

 

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.

“It was like a grieving process. The worst thing for me was worrying that she could never love me as much as I loved her,” said Jo.

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

 

 

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Holly

 

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.

Holly

 

 

Back to Basics !!!

Back to Basics !!!

Austin Hughes Training and Advice  Officer for Anna  Kennedy online

 

 

What do I say?  How do I say it? What should I wear?!

As with all things in life there are so many questions to be asked about autism. Sometimes I think we are all guilty of getting carried away with everything going on and forgetting the very basics that can help us out. If we know nothing then we strive to find out everything we can all at once. If we know lots of things then we try to use them all at the same time often forgetting the simplest things.

‘What on earth is he going on about?’ I hear you all say. Well, daily like many other people I do what I can to give advice and information to those that need it. Some of those looking for advice are parents just entering into the world of ‘autism’ and needing help. On many occasions those looking for advice are parents/relatives that have actually been living and dealing with autism for some time. An event may have taken place that has caused their loved one to act in ways they have never seen before, a new behaviour may have surfaced or there may have been a rise in challenging behaviour for which they can see no reason. These people are often very upset and frustrated because they have ‘tried this and tried that’ or ‘implemented this new strategy…’ but to no avail. They think they have failed and have no hope of finding an answer.

Often the best answer is there right in front of us but we don’t always see it. We are so keen to actually do something we miss the subtle basics.

So, what are those basics?  When all the wonderful technology around us goes wrong we have this option to ‘reset to original settings’, what that basically does it put you gadget back to the state it was in when you first got it and it achieves this by removing all the extras/apps that we have added. In relationships we do the same. Where a problem or hard time is reached we start to strip back everything around us so that we get back to the point where we were comfortable. Within life as a whole often the best answer is to just get back to a basic level where everything was ok and from there build again.

Autism is no different to any of the things already mentioned because often the best action is to remove all the other influences around that person and this will help them.

To try and put this into perspective think about this. When we all walk to the shops how often do we stop and think about all the information that we are taking in and processing?  Very rarely! We might notice a smell because it reminds us of something or a colour because it stands out but on the whole everything that is happening around us is processed within us without us even noticing. It isn’t a case of it just passing us by but that all that information is being dealt with in such a way that we take it for granted. It builds a living picture of the world around us that we just accept. For many of those on the ‘spectrum’ the taking in and processing of information can be very different. Many have heightened sensory skills so everything is louder or brighter than it may appear to us. The biggest point of all is that in the way we just take all that information for granted they actually have to think about and take every single piece of it in. Stop and think about that for a moment……..think about everything your senses come into contact with on a short walk. Everything smells, everything has a texture, almost everything makes a different noise, every brick in a wall is very singular and different to the last one and the list could go on. Now just imagine if rather than it all being just accepted and taken for granted how you would feel if every single little thing you had to consciously think about and accept. It would be very tiring. Sometimes when we start pressing too many buttons and commands our computers freeze and take time to catch up. We all have a point where that would happen to us as well and we would all just stop to take a time out for a few minutes. But just imagine if you can’t do that…..if that conscious process of all information is constantly there with things having to be accepted and acknowledged. You would in time get use to it just as all the wonderful people we work/live with do but if you then start to throw in all the other anxieties, problems and fears that someone on the Spectrum can have to face you soon reach that breaking point again.

The point I’m trying to make here is that if we are faced with a new challenge or problem with someone that is Autistic and we don’t know the answer then rather than try to throw new ideas at them to solve it we should first go back to basics. Make use of a quiet room or area, remove distractions from the area and ensure that they have the things around them that we know they love. Even changing the way we ourselves act around that person can help dramatically. Panicking and charging around, because we mean well, is just added chaos which someone who is distraught and struggling to taking everything in doesn’t need. Rather than accept you being there to help and support they are likely to push you away, not because they don’t want you but because right at that moment they can’t deal with that extra ‘information’. No matter how worried we get it is always best to not let it show. Talk in short factual phrases, avoid direct eye contact and if possible lower yourself to a level that is below that of the person you are trying to help. In doing this you reduce the stress and often that helps the person to find a balance again. When someone has been returned to this balanced state……then you can start to tackle the problem!  These again are all things we kind of take for granted around us because we just accept that is what happens. If a 999 caller is hysterical the emergency services don’t just send everything straight away without knowing the problem, they wait and help that person to calm. Once that person has reached a calmer state then the emergency services can better collect the information they need which tells them what the problem is and how they can solve it.

It might seem like such a small thing to us but you will, as I have in my own experience, find it can really help as it is such a big issue to anyone on the Spectrum. Help to get that person back to a level state first……and then try to find the answer.

 

Austin Hughes

Could more to be done to stop autism bullying?

Could more to be done to stop autism bullying?

Anna Kennedy and Austin Hughes speak at House Of Commons

 

That’s the hope on World Autism Day, after a new survey found that 74% of parents of children with autism say their child finds break or lunch times difficult, or even frightening.

And 67% of children with aspergers report that they are taunted and bullied at lunch time.

Autism campaigner Anna Kennedy has teamed up with the Anti-Bullying Alliance for a campaign to highlight the problem.

Please click on ITV player to see Anna’s interview on ITV London Tonight:

 

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Dancer James Hobley stepping out across the globe again

Dancer James Hobley stepping out across the globe again

James Hobley

James Hobley

DANCING Teessider James Hobley will again perform on the world stage as he continues to spread the word about autism.

Redcar teenager James, who enchanted the country when reaching the Britain’s Got Talent final in 2011, will perform at the opening of the World Autism Conference in Spain.

His May trip to San Sebastian comes hot on the heels of a similarly prestigious invitation last year when he flew to New York to perform at the genius of Autism event.

In Spain, the 13-year-old, who has autism, will perform at The Kursaal Convention Centre with The Basque Symphony Orchestra in front of thousands of world delegates.

James will perform to Imagine by John Lennon after a video address from Yoko Ono, who is the first global autism ambassador. He will then perform to excerpts from Bizet’s Carmen.

Autism expert Dr Joaquin Fuentes offered to fly James over to Spain to perform after seeing his story and performances on Britain’s Got Talent.

James’ mum Sheila said: “James has never been to Spain before and is looking forward to it so much.

“This will also be his first time performing a classical ballet piece in public.

“It will be a great honour for him to open the conference and a marvellous opportunity to perform Carmen in Spain.”

James’ performances will be brought together by his freestyle dance teacher in Eston, Anita Brown, his ballet teachers at Guisbrough, Katrina and Thelma Thompson, and his ballet teacher at his vocational ballet school, The Hammond in Chester, Hana Goseling.

And as our pictures show, during a weekend visit home, he took the chance to meet up with his Teesside tutors and work on his routines.

Meanwhile, James has also become a junior patron of the Anna Kennedy Online charity for children on the autism spectrum and their parents.

He will be performing in London for Anna’s charity in May, after his appearance in Spain, at an event called Autism’s Got Talent.

Sheila added: “James has had so many opportunities since appearing on BGT in 2011 and making the final. It has been a wonderful platform for him to raise autism awareness and help inspire others.”

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Month: April 2013