Little Dougie – autistic, unmissable, adorable

That’s certainly true for Sarah Lynch. She has her hands full being a mother to Mason, 16, Jude, 14, Peyton, 12, and three-year-old Dougie.

But day to day life is made more challenging as her youngest son was recently diagnosed with autism.

Dougie is a loving and lively boy, who like many children his age, loves animals, dinosaurs and running around outside.

But this lifelong developmental disability affects how he sees, hears and feels the world and how he interacts with others.

It can lead to unpredictable behaviour for Sarah and her partner Phil to handle.

“With Dougie I’ve had to learn to be a mum all over again as I need to be more of a carer than a mum with him to manage his behaviours and moods,” says 35-year-old Sarah.

At moment Dougie cannot talk, instead communicating using The Picture Exchange Communication System (PECS) and has learnt to exchange single pictures for items or activities he wants.

“The stress and worry that comes with being a parent is already immense but when you have a child with additional needs it’s even more so.

“We’re constantly living in the world of the unknown because we don’t know what the future holds for him and that causes a lot of stress and worry.

“At the moment he’s non-verbal - he has no words and we don’t know if he ever will have. No one knows and that’s very hard,” Sarah.

Getting a diagnosis of autism involved 18 months of tests and observations with NHS experts. “It’s all about labels these days and without a label you can’t access support or therapies.

“It’s gruelling and intense,” says Sarah. “It starts to make you doubt yourself and think have I not taught him properly?

“But I knew really that if I’m saying to him ‘say mama’ and it’s not that he’s just not listening, he doesn’t even know I’m talking to him, something else is going on,” says Sarah, who works at health and wellbeing charity The Kaleidoscope Plus Group in West Bromwich.

Dougie also has sensory processing disorder, which is where the brain has trouble receiving and responding to information that comes in through the senses.

“Dougie’s senses aren’t at the level they should be. Some people think he’s just hyperactive but he’s not getting the sensory feedback he needs.

“If I sit in a chair, I know I’m sat in a chair from how it feels but Dougie wouldn’t. He would be constantly moving around and wriggling about to feel it. He will often throw himself against the wall to get that sensory feedback.

“For him to calm down enough to fall asleep is really hard. He can be up at 4am or 5am and on the go all day.”

Going out can also involve a lot of planning.

“Dougie doesn’t like people interacting with him so someone saying ‘hello’ or ‘look at him’ to him in a supermarket can upset him,” continues Sarah.

“I’ve had people say ‘why do you take him out, he obviously doesn’t like it?’.

I got him some badges that say things like ‘Yes, I have autism. No I’m not Rain Man’ and people ask me why I am drawing attention to it but it’s just to raise awareness.

“My partner Phil is a lot less self-conscious than me. For him, Dougie is Dougie and if people have a problem with that they need to leave.”

“Where as I’ll be the one saying we need to leave,” she says.

The family is able to take advantage of activities specifically tailored for children like Dougie such as relaxed viewings at cinemas and soft-play sessions for children with autism.

Sarah says it can sometimes be a bit of a juggling act as she has to balance her three-year-old’s needs with those of her other three children.

“Dougie doesn’t like swimming but my other children do so sometimes I have to be cruel to be kind and take him to places that he may not like,” she says.

But despite the challenges and uncertainties that come with Dougie’s autism, Sarah says she wouldn’t want him to be any different.

“I would never have chosen this life for him but I wouldn’t change him now,” she adds. “His personality is so quirky and funny and even though he can’t speak, you know he’s in the room. If you were to take a lot of his difficulties away, you would take his personality away too.

“He’s the glue that holds our family together. Some days this is a bad thing because our life revolves around this three-year-old monster who requires so much attention but other days it’s amazing as we all get excited that’s he’s learnt to point his finger or blow a bubble.”

It’s been a difficult journey for Sarah but she has now set up her own support group for other parents of children with additional needs so they can share their experiences and offer advice.

“Being a mum is hard but when you are a mum to a child that requires a lot of care, whether that be physically care or emotional care, it’s even harder and it can be isolating.”

“I used to pull back from going to places and seeing friends. I wanted to talk to my friends about my hard day but their hard day was that their child wouldn’t finish his dinner, my hard day was that my child didn’t want to go outside wearing shoes.

“They couldn’t understand why I couldn’t just tell him he had to wear them,” says Sarah.

The first few meetings have already been held and she has been pleased with the response so far but is keen to encourage other parents to join in.

“What has been really good is that we’ve got what I call veteran mums whose children are in their 20s.

“They’ve seen it all and have been through every stage of school - they are a wealth of knowledge.

“Talking to someone whose child was diagnosed at the age of three and is now going to college gives you hope.

“It’s also sharing things like ‘my child clapped for the first time’ which may not seem like a big thing as children clap all the time but for a child with additional needs it’s huge,” says Sarah.

Her group which is being supported by The Kaleidoscope Plus Group will meet every Wednesday, between 10am and 11.30am .at West Bromwich Town Hall from May 8.

* Contact Sarah or Kirstie Barnes for more information on 0121 565 5605.