The isolation is horrendous

Two parent carers describe the lonely struggle they face over summer holidays -  with no childcare options for their disabled children.

Emma, from Great Yarmouth, loves being a mum to her daughter, Amber.

But as well as being a mother to Amber, Emma is also an unpaid family carer for her daughter.

Amber, now aged 20, was diagnosed with Autism when she was just three. She was later diagnosed with both ADHD and Gender Dysmorphia when she was still only eight. And she did not talk until she was seven and only started reading aged nine. She also has Sensory Perception Disorder and Specific Learning Difficulties.

As schools and colleges close for summer holidays, Emma is incredibly anxious about how she is going to cope looking after Amber over the summer without any prospect of a break. That’s because, with Amber’s support services at college now closed for the summer, Emma is facing long weeks of being Amber’s  peer supporter, mental health worker, entertainment organiser as well as nurse, 24/7. There will be no more extra support, or respite for Emma, until college reopens after the summer.

Up to now, Amber’s education has gone well. She is  in mainstream education, studying an IT course at Norwich City College. During term times she has a support worker to help her concentrate on her course, which is an effective strategy. Previously she attended a social, emotional and behavioural school which had very small classrooms and where she achieved several GCSE’s, as well as BTEC qualifications.

Eighteen months ago the family moved to Great Yarmouth from South Cambridgeshire to reduce their cost-of-living. The move has been a success in that they love living near the sea and are finding Great Yarmouth much less expensive.

The negative side to this is that they have lost their network of friends and family and feel very isolated.

In an effort to build up a work from home lifestyle, Emma has enrolled in a three-year Creative Arts and Well-Being degree course - to study, make friends and form an eventual career. But  none of this alters the loneliness and exhaustion she experiences by being a parent carer, when school and college are out for the summer.

Emma said: “Amber is now classed as an adult but the system does not seem to understand that she is actually a 12-year-old in a 20-year-old’s body. It is not healthy for her to be with us all the time. She has no routine.”

Ash Strawson is a parent carer in Cambridgeshire. She cares for her disabled seven-year- old son Max. And with no support available to them, summer holidays are really difficult.

Max, who is adopted, was traumatised before he was one, probably due to foetal alcohol. He was diagnosed with developmental trauma as well as developmental delay.

His behaviour is often extreme. He totally relies on Ash, so although school and the term time is the only respite she has, very often he cannot cope and has to be collected part way through the day.

“I knew, four days after bringing him home, that we had serious issues to face. He goes to mainstream school but he has severe separation anxiety. I struggle to cope. He literally does not feel safe when he is not with me.”

Ash struggles to get the right help for Max partly because a complete diagnosis is very difficult because he does not have easily diagnosed symptoms.

“My husband has been taking anti-depressants. His school is the only way we get a break but despite this burden, he is an amazing person.”

Both Emma and Ash are supported by Caring Together,  a charity which supports unpaid carers in Cambridgeshire, Peterborough and Norfolk. Caring Together is one of over 100 local carer charities that are part of national charity Carers Trust’s network.

Andy McGowan, Head of Engagement at Caring Together said: “Some unpaid carers have never heard of their carer helpline, which is there to offer support.

“We give parent carers the opportunity to have someone to speak to find out what support might be available to help them in their caring role.

“On some occasions we have been able to link people and their families into opportunities to improve their current situation, whereas for others it might be having a conversation about what they would do over the summer if there was an emergency affecting their cared for person.”

“We have also been able to try and help them source grants and bursaries which might relieve the pressure. Additionally, we run a variety of trips and activities over the summer holidays for young carers, so that siblings are able to have a break from their caring role and meet other young people in a similar situation.

“We continue to work closely with our local parent carer forums, local authorities and other organisations to ensure that parent carers are able to access assessments that they are entitled to and very much need, so that it can look at how their caring role impacts them and ultimately improve the lives for them and their families.”

To contact Caring Together please follow this link.