Tuesday 24 April 2018

'He's a fantastically, beautiful special child... I just hope that he has a valuable future' - Mother-of-three struggles to get help she needs for severely autistic son (11)

Autism, kid looking far away without interesting
Autism, kid looking far away without interesting

Sasha Brady

An Irish mother-of-three has described the difficulties her family face in taking care of her severely autistic son (11) as they struggle to get the help they need.

Sarah Pitchford is a full-time carer for her non-verbal, severely autistic 11-year-old son Ian.

From the outside, she seems like a happy-go-lucky, fun and easy going person but according to her friend Adrienne, it's a different story at home.

"The Sarah at home is a very different Sarah," she told the Anton Savage Show on Today fm.

"As a friend from the outside looking in, every day the situation is getting worse. A lot of people we interact with every day don't know what's happening.  It's not just Ian's autism. It's everything that comes with it. I can see a family breaking down. And in my opinion, a relationship breaking apart," she said.

Since Ian was diagnosed with autism at two-years-old it has been a constant struggle to get him the help and care he needs from a service that is stretched to the limit.

"[The staff] are fantastic but they're so stretched. They have to spend so much time doing paperwork that they don't get enough time to see the kids. And they have so many kids on their books. It's hard," explained Sarah.

"My son is my world, his autism is a demon that causes the rest of us so much stress we end up taking it out on each other," she said.

"It's really hard to say something so negative about your own child because he's beautiful, sweet and gorgeous," she added.

Sarah described the temper tantrums her son suffers from which has resulted in him punching her, accidentally giving her whiplash and another tantrum which ended up with Ian getting a concussion.

"Normally he goes to school and he can have a good day or a tough day but he has been out of school as he struggles with his bowels. He's been [chronicaly] constipated since he was 12 weeks old so that's another challenge.

"It feels like as soon as we get something working, get something going, it's as if his body readjusts and we have to start all over again."

With Ian out of school it has become a huge struggle for Sarah and Nigel to help their profoundly autistic child achieve his full potential with little or no support from official agencies.

For most families, it's a big of a geography lottery and to a large extent, they're dependant on what's in their area.

"It's all very well that families with special needs [receive] respite grants but when you're in a rural area theres nowhere to spend that money," said her friend Adrienne.

Two years ago the family availed of respite services of four hours, spread out over two days, in a centre in Gaway.

"The first day was handy because we got the kids their school books but the second day, we had nothing to do in Galway so we just wandered around.

"I'd like to see a mixture between homecare respite and respite in centres with trained experts," she said.

"It's a constant struggle. I don't think [my daughters] see me cry but they do. It just affects us all and we take it out on each other.

"There are parts of autism that are gorgeous. He's a fantastically, beautiful special child. You'd melt for him, you really would," said Sarah.

Despite the difficulties she faces and the fear that the services she depends on will endure further cutbacks, Sarah is determined to see that her son will find his place in the world.

"I just hope that he has a valuable future... that he can become a valuable member of society."

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