Support vital for carers like Karen

CARERS WEEK ....  Karen Taylor-Russell and Daughter Georgia
CARERS WEEK .... Karen Taylor-Russell and Daughter Georgia

WHEN Karen Taylor-Russell left the hospital after finally getting a diagnosis for her autistic daughter, she felt far from relieved.

Instead, a “horrible feeling of abandonment” set in as she wondered what would happen next.

The 45-year-old, from Roman Road, Jarrow, admits she felt like “a bad mam” before 11-year-old Georgia was found to have Asperger’s Syndrome, an autism spectrum disorder (ASD), two years ago.

She struggled to make friends and her behaviour could be difficult, but things came to a head when she started harming herself and others.

Like many autistic children, Georgia found it hard to express herself, and in frustration would pull at her hair and lash out.

Karen, who is her daughter’s full-time carer, said: “It is very difficult to diagnose autism in girls because it is mainly a boy thing for some reason.

“Georgia was born with hip dysplasia, which meant she had no hip sockets, and she was very late walking and talking.

“Initially, we put it down to her hips and the trauma of all that.

“When she was quiet and withdrawn around others, we started making excuses, thinking she was just a shy child.

“It wasn’t really until she hit six did I realise she wasn’t progressing like all the other children.

“She was diagnosed at nine, but it took a year of counselling and tests to find out exactly what it was.

“I couldn’t cope any more. I got to the point where I thought ‘am I a bad mother here, because nothing I am doing is helping’.”

Karen, who is married to Dave, 47, and also mum to A-level student Callum, 17, and step-daughter Jasmine, 20, who has a five-month-old son, Cole, said her daughter’s condition “affects her hugely”.

“She has problems with friendships because she can’t understand facial expressions,” she said.

“She’s got no empathy with people, she doesn’t understand if people are upset or sad.

“She has processing difficulties, so with games she doesn’t understand the complexities of how the game’s structured.

“She has sensory problems. She doesn’t like noise – the sound of people running around upsets her.”

She added: “Everything has to be just the way she sees it in her head.

“If Georgia came in and I’d changed the sitting room around, it would really upset her, because it wouldn’t feel safe to her any more.

“We have done her bedroom from top to bottom to make her feel more grown up. Going into senior school, and even the smell of the furniture upset her.”

Karen has been told by friends not to “pander” to her daughter, a pupil at Fellgate Autistic Unit, and even family members don’t fully understand her condition.

But she has found the help and support she craved in those early days by speaking to other parents in her situation.

“The first time I went to the Parent ASD Support Group, I felt like I belonged somewhere,” she said.

“We have problems with Georgia, but when you listen to other people’s problems, we are lucky in a way really.

“Things can be a lot worse and you don’t realise. It does make you feel humble.”

Karen has already joined the parents’ group at the post-11 autistic unit at Jarrow School, which her daughter will join in September.

She said: “I like getting involved because the more involved you are in different groups, the more information you find out and the more support you receive.”

Twitter: @shieldsgazedu

KAREN hopes others will be spared the isolation she first felt with the introduction of a new Carers’ Pack.

It has been produced by South Tyneside Council and the Carers’ Association in South Tyneside (Cast).

They have worked jointly with other voluntary sector organisations and carers in developing the information.

The pack will make it easier for professionals to identify and support carers and provide them with clearer details to help access the full range of support available in the borough.

The information is available for all carers, but its main aim is to support wider engagement and identification of ‘hidden’ carers.

Karen said: “My first port of call would have been Cast, if I’d known it was there.

“When a child gets diagnosed, you walk out the door and it’s like ‘you’ve got what you want, you’ve had your child tagged, now get on with it’.

“I remember when it happened to me. I didn’t cry when they told me, I started crying when we got outside.

“It was that horrible abandonment as we walked out, thinking ‘what do we do next?’

“There was no support at all.”

Karen, who has been getting involved in carers’ strategy meetings, has praised the dedication of the people behind Carers Week celebrations in the borough this week.

As well as looking after her daughter, she also cares for her parents and has had counselling herself for depression.

She said: “My mam’s poorly and dad is in a nursing home with Alzheimer’s. Sometimes it gets to the point with my health when I can’t get out of bed.

“Some days I just want to cry and I can’t. Georgia doesn’t like anyone showing any emotion.

“But whatever happens, she comes first. Her autism is what makes her the unique and special person she is.

“Every day you wake up and something else could present itself with her behaviour, but you just take it day-to-day.”

A full list of Carers Week events can be found at Cast can be contacted on 454 3346.