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When Kirsty Pellow’s son said his first word at a few months old, she assumed he was just incredibly bright, but as he got older and struggled with everyday situations, she feared something was amiss.

But it took a huge fight over the next five years to get a diagnosis, not only for autism, but for sensory processing disorder, dyslexia and pathological demand avoidance (PDA) and he also has some ADHD traits.

Reuben, who turns nine this month, is high functioning, but is academically two years behind his peers.

The various conditions means that he struggles socially, suffers anxiety over daily tasks, is highly sensitive to sights, sounds, textures, flavours and smells, has a low attention span, struggles to write because of his fine motor skills and needs physio daily as well as a myriad of other things.

(Image: Greg Martin)

His brother Leo, six, is showing some signs of some of these conditions, including dyslexia and sensory processing, but Kirsty said she worries about that and question herself.

“Am I creating it by immersing them in that world?” she said.

Kirsty, 30, who has been a single mum for three years, said it has been tough, but she has always “stood up and fought” for her son and encourages other parents to do the same.

“I know there are parents out there that haven’t got the same confidence and I want them to know they can advocate for their children,” she said. “Mums know their children, they have to stand up to professionals, go into schools and stand up to them. My son taught me not to be afraid of authority.”

She said she first thought autism when he was two. “Initially I was told by family it was a phase and don’t worry. There I was thinking these terrible things about my child. You do feel like you are going kind of crazy.

“Between the age of three and five he saw three paediatricians who said he didn’t have autism because he was a bright child and would make eye contact, although he wouldn’t hold gaze for long.

“He learned his alphabet in a day, while children were counting to ten he was working with cubes. At four months he said his first word, ball. That myth of language delay is wrong."

(Image: Greg Martin)

“He was fussy with his food, my husband said it was a phase. When my younger son was born Reuben completely ignored him for a month, like he didn’t exist. This was not okay! He would lick table legs,

“It is an interesting life. He is high functioning, not your classic autistic. However the myth of Rain Man is just that as he really struggles with maths.”

She said children are not often put on the diagnosis pathway until they are seven as it could just be a developmental delay.

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“I got told I would have to go on the waiting list, which is two years to be seen for the initial assessment,” she said. “I said I am not having this and turned into a bit of a Mumzilla. I probably annoyed the team, but he was assessed and diagnosed within eight months.

“Once we started to accept it, I didn’t care what the diagnosis was, I wanted to know so I could figure out how to help him and understand him better."

(Image: Greg Martin)

“I went into fight mode, detached my emotion. When the diagnosis came a year ago this month I burst in tears. For a good month I spiralled into depression. I had kept all that emotion in for so long. Now it’s real.”

She said she still gets day which are hard, but she refers back to two A3 pieces of paper. One which lists all his conditions and what that means, and another with his name and all the things that are brilliant about him.

"I am a geek, I read up on everything I could. When I realised it may be autism I studying it. I explored it all. He was licking table legs, chewing cuffs and I ended up in hospital with him when he swallowed ball bearings – this is not normal.

“I thought he was just non-compliant but his educational psychologist mentioned PDA two years ago. He wouldn’t flush toilet as he thought it would flood, he wouldn’t go outside if there were clouds as he through the wind would blow him away.

“Unless he is in control of something he doesn’t want to do it, because he is not sure it is safe.

“Last year he has five or six different diagnosis. How am I as parent supposed to deal with that? Does something I do for one, conflict with another? So I got a piece of paper and wrote down all diagnosis and how it linked, and thought that’s a lot. So I took another and wrote down his name and all the brilliant things about him. Then I put them away.”

“I don’t like the term disabled,” she said. “I like to say differently abled. Every parent worries for their children, but nothing is certain for my son. I want to get him through his education mentally well.”

Reuben only started full time education aged six, having been home educated and then flexi-schooled by Kirsty, because he found school distressing.

“He is bright, but social awkward, he doesn’t really have many friends in his peer group, preferring younger children or adults."

Kirsty is currently half way through the process of getting an education, care and health plan – a process which involves a huge amount of work.

The boys both attend Trannack Primary School in their home town of Helston, who, Kirsty said, have been fantastic – paying for a part time teaching assistant in year three and working with her to help Reuben.

(Image: Greg Martin)

“I am aware he is one child in a class and I feel it’s my job to provide what he needs,” she said. “He is doing okay, but life is a huge deal.

“Autism is his heaviest diagnosis. The SPD is also huge as he is sensory seeking. He spends most of his lessons standing. He needs to move to process information. He has physiotherapy every morning before he can settle.

“He is exceptional reader, but struggles writing because of his fine motor skills. He has a mental block with maths and that sends his stress through the roof. I would say 90 % of lessons he is taken out, because there are too many sensory things around him. It is Incredible challenging.”

Kirsty has a mini gym set up in her living room, with swing and trampoline and other equipment so he can get his energy out after a day at school. “He comes home to his own environmental and it’s on his own terms. He knows he is safe.”

She said although many children with autism can struggle with transitions, she has found a way to make them easier Visual charts at home, time tables at school and pre-warning him of any changes.

“His school life has already been hard and in a minute he will be going from primary to secondary school. I don’t know how he will cope, will he get lost or failed by education?”

She said there is also a “constant guilt” she is giving him more attention that Leo. If Leo gets an invite to a party she had to work out the logistics as Reuben cannot cope with them.

She said their dad Justin Hendy is still involved in their lives and is very supportive, but works full time. “It can be very hard, juggling everything,” she said.

“I feel I have done the best I can with what has been some incredibly difficult circumstances. In Reuben’s journey and mine. Overwhelming thing is there shouldn’t have been this fight, there shouldn’t be a waiting list of two years.

“In year two and three at school I lost him. He became someone I didn’t recognise. He was sensitive and gentle and became incredibly stressed and anxious. It was heart-breaking. Towards the end of year three he got one-to-one funding from school and the difference in him was massive.”

She said despite the diagnosis, she does not want that to be all they are. “It is important to remember they are still children and don’t want to put labels on so they become just that thing.”

The fight she had getting answers for Reuben has led to Kirsty working with other parents of children with special needs and setting up her own Facebook page to help families.

“The fight I had put fire in my belly,” she said.

Last year Justin sent her details from Cornwall Council looking for volunteers to work with parents of children with additional needs and said she would be perfect for it.

As a result she now works for the Supporting Change in Partnership, which works with individual families for 16 weeks at a time helping them reach goals relating to things like helping with the child’s behaviour, helping with communication, assistance with benefits and solutions for sensory needs.

“To see their faces when you arrive and they are so overwhelmed and them to see them brighter when you leave it wonderful. As parents you can get passed between people. It can quite frustrating, particularly when it’s on a daily basis and your children are struggling.

“The professionals are up against a lot – under-staffed and under-funded. Sometimes they cannot be specific, like why is my child doing this particular behaviour?. As you go along your own journey you are living day to day, but speaking to others you realise just how far you have come.”

And this year she set up a Facebook page ExtraOrdinary Cornwall, which she hopes will become a community hub, bringing together all the services out there for children with disabilities with families and individuals who have vast knowledge and experience in the field to help others.

She said: “My aim for this page is to have it become a font of local knowledge, to establish a cohesive community and ultimately, to save parents precious time by collating crucial information about local professional services and advice, support and top tips from parents in the know.



“I have a real passion for being a proactive, positive advocate for my children and hope to empower other parents to achieve that too. It's not an easy journey by any means.

“People don’t always know where to get services. These things can have a big impact on your life and your health. I want to create a one stop shop. I hope to write articles about how I did the ECHP too and want to set up a PDA support group.”

ExtraOrdinary Cornwall is organising a family friendly 5k night walk for autism awareness week and raise money for the Cornwall branch of the National Autistic Society.

The walk on March 30 starts at Penzance Wharfside car park (6pm for 6.15pm start) goes down the length of the promenade and back to the start.

Everyone is welcome and participants are invited to wear bright clothing.

To sponsor please visit: https://www.justgiving.com/crowdfunding/extraordinarycornwall

What is autism?

Autism is a developmental disability that affects how people perceive the world and interact with others -they see, hear and feel the world differently to other people.

It is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning difficulties, mental health issues and other conditions, meaning people need different levels of support.

What is PDA?

It is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in relation to social communication difficulties; social interaction difficulties; restrictive and repetitive patterns of behaviour.

In addition, the central difficulty for people with PDA is their “anxiety-driven need to be in control and avoid other people’s demands and expectations.”

What is sensory processing disorder?

Children with sensory processing issues can be oversensitive to sights, sounds, textures, flavours, smells and other sensory input.

This can make a trip to a toy store or trying a new dish at a restaurant an overwhelming experience for them.

Other children with sensory processing issues are under-sensitive to information they receive through the senses. This can lead to other problems.

Sensory processing issues can impact a child’s social skills. It can also cause difficulties in the classroom.