Give us a break!

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Holidays and short breaks offer huge benefits for children with SEN and their parents

What are the benefits of holidays to us – a chance to recharge our batteries, to gain a new perspective on life or a break from the old routine? For most of us, they are all these things.

For families with a child or family member with SEN, though, a short break can mean even more than this. For many of these families, time off can be very difficult to come by. Often, people with learning disabilities needs specialist care, which is expensive, and which can place a huge daily burden on family members. Mencap’s 2012 report, Short Breaks Support is Failing Family Carers, highlighted the insufficient level of support that  people who care for family members with severe or profound learning disabilities receive. The authors spoke to families about how short breaks, or the lack of them, affect them.

One mother described how a lack of respite affected her: “Without short breaks, I am consumed by disability, lose friends, lose my identity, become isolated and unable to provide the care my children need”, she said.

A father revealed the difference that a short break made to his own and his wife’s life: “It allowed us just to do the simple things – shopping together, visiting people or just sitting down and watching a film on TV without being interrupted. The lie-ins we have we really look forward to, as this gives us chance to recharge our batteries and just spend a few hours together as a couple.”

Down time

Surely, of all those who need a holiday the most, families that are constantly caring for loved ones should be near the top of the list. How difficult, though, are such holidays to come by for families of those with SEN? Clearly, this depends on the amount of support the person being cared for requires; mobility and cognitive capacity are clearly factors that can determine the cost and choice of holidays. Once that has been assessed, the family is reliant on information available on supported holiday providers.

Mary, the mother of two children with Down syndrome, found an organisation which could give her children a supported holiday and provide separate accommodation for her to have her own holiday. “I have never had a holiday without the children until now”, says Mary. “They have been away a couple of times for two or three nights, but I have always had to be around in case I was needed, so I couldn’t go away.”

But what about short break care? How often does Mary receive this? “Both Emily and Andrew get Direct Payments from Social Services. That means that they have money to pay for buddies/carers that I employ. This covers days when they are not at college, and is particularly useful in the holidays. They do not, however, get overnight respite”, she says.

When Mary finally went on holiday on her own for the first time in 20 years in 2012, she clearly felt the benefit: “I loved being able to get up and go to bed when I wanted to”, she says. “Being able to relax and read a book was wonderful. Usually, when Emily and Andrew are around, I have to be constantly aware of where they are and what they are doing to make sure they are safe. They can also be very demanding of my attention and so to do what I wanted to do – or not do if the fancy took me – was a joy. I came home feeling that my batteries had been well and truly recharged and I was better able to face the next few months.”

The experience has also done a lot to prepare Emily and Andrew for later life. “One of the reasons I wanted them to come on this holiday was for them to realise that life continues without me having to be there”, says Mary. “Neither of them like to spend time away from me and they can be anxious – especially Andrew. I am looking towards the future and them being able to go into independent living, and so they both need to experience more time away from me; this they could do on a holiday. Emily has definitely seen the positives of a holiday. That is the main benefit Andrew and Emily had, as well as realising that an organised holiday didn’t mean getting up early every day, being out and about doing something all the time – they could still have a restful holiday.”

So, for the family, a break from each other can mean many things: it can introduce children with SEN to a taste of independence and a glimpse of what life could be like without parents or guardians. It can also be a chance for the carer to have some free time to rest and recuperate.

Looking out for the whole family

Parents and carers can also find that respite time is an opportunity to give undivided attention to other members of the family, such as their other children. Mrs White, who has a son with Angelmann’s syndrome, had a week’s holiday in the Canary Islands with her husband and daughter. In the meantime, her son enjoyed a supported holiday near the Mediterranean. “It was the first time we had ever been apart from Scott, so it really felt strange. But it did mean we were able to spend some quality time with Alana, which was great for us all”, says Mrs White.

“Scott is epileptic and cannot speak, but is always smiling and loves music and dancing. He had an amazing time on the holiday and was able to make new friendships, while strengthening his bonds with his support workers.”

The idea of “strengthening bonds with support workers” is very important for the person being cared for. This can help to reduce the complete dependence of someone with SEN on one support body, such as the family, which can occur because of a lack of short breaks. Once links are made to support structures outside the family unit, through short breaks and supported holiday organisations, the dependence, that can sometimes feel like a burden, especially for people who are isolated, can be shared and lightened.

Tracy Date has seen many children benefit from short breaks at the organisation she works for, The Brandon Trust, which organises holidays and breaks for children with different support needs in Cornwall and Devon. “All the children had been referred to us from the local health authority as having significant support needs, including behaviours that challenge, autism and mental health issues”, she says. “This is the first time any of the children would have experienced the same type of holiday as their siblings, independent of family members. This holiday, provided through a specialist holiday company, enabled them to build a timetable for the holiday around the children, taking account of their individual disabilities and support requirements.

“During the course of the holiday, it became apparent that the children were growing in confidence, trying new activities, like kayaking, and interacting with the other children in a way that we had not experienced previously. We noticed that the children were developing skills in sharing, team work, patience, negotiating time and support and empathy if others were struggling.

“For all of the children there has been a marked difference in confidence and the ability to deal with situations that would otherwise have been difficult since their return from France. This has been shared by family members, schools and other professionals.

“Some of the children had previously been excluded or were struggling with school. Since the holiday, all the children have consistently remained in school, even if things became difficult. One child has been through transition and now has an individual young adult package of support that his family commissions for him, based on their acknowledgement of his growing independence.

“One of the children has been much more accepting of a number of new people in his support team, although he had previously been quite anxious about meeting new people.”

The mother of one of these children believes that all concerned have really benefitted from her son’s holiday and the short break she received as a result: “He’s only eight, so still has a way to go, but I am definitely noticing a change in social behaviour (on good days) so that I can just about manage a small trip to the supermarket to get something he wants, or learning that when a ride finishes he has to get off, or learning to say sorry after an outburst without any prompting.

“The break gave me time to get things done that are very hard to dowith Alex around, or for me to spend some time with friends, as this is impossible when I have Alex as he just wants my attention and doesn’tlike me talking to anyone else; this includes talking on the phone. Italso meant I was able to spend time with Katie doing fun things orattending school things or watching her with her horses, and being able to give her the attention she deserves, or also just spending some time with Paul and actually being able to talk to each other”.

Feel the benefit

The advantages of short breaks and holidays for children and young people with SEN are clear. They can introduce some to independence away from the family unit. They provide a time for the young person with SEN to grow accustomed to spending time with others outside of the family unit and learn new social skills. The benefits for the family are also many and various: they are an opportunity for parents to have some time with others or to be alone and give themselves time to develop their own identity. They can give families hope that the person they care for is working towards a more independent life or getting used to being with others more regularly. They also provide the opportunity for families to feel refreshed and recharged.

The author Paulo Coelho poetically describes the benefits of travel in his book The Pilgrimage. He discusses the “rebirth” we feel as we experience new things and new situations, and how we become more accessible to those around us. “Since all things are new, you see only the beauty in them, and you feel happy to be alive”, he says.

We all need more of this philosophy in our lives, and perhaps parents and carers of those with SEN need it more than most.

Further information

Ian Callen is Director of Go Provence Supported Holidays, based in the South of France, which provides supported holidays for people with learning disabilities:
www.goprovence.co.uk

Mencap’s report, Short Breaks Support is Failing Family Carers, can be found on the charity’s website:
www.mencap.org.uk

 

Respite/holidays
Director Go Provence Supported Holidays

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