Parents and unpaid carers

When our 3 boys were young, two of them were already diagnosed with severe autism.

My wife and I became their carers and for 10 years we had no help from Social Services because it was judged that we were coping, and we were too busy to challenge or even be aware of that.

As an unpaid carer, in order to cope with the challenges that life has presented to you, then your life shrinks to encompass just your children, mainly in order to cope with autistic behaviour and keep family life on an even keel.

But it is not doom and gloom…..just dealing with life as it is……and you can always find fun and enjoyment in caring for your children.

Caring is a lifelong role, to ensure the wellbeing of your loved ones.

One thing that can happen is that you are so focussed on coping that you become isolated within your own community…..tough if you are a couple…even tougher if you are a lone parent.

We were lucky in some respects because our middle son was and is a typical young boy so that meant we were involved at the school gate (many youngsters with autism are bussed away in the morning and brought back in the evening and you don’t meet other parents), so we were known in the community.

Our 2 autistic boys are now 27 and 20, the eldest being in Supported Living, the youngest lives at home with us. We have built a good fulfilled life for our youngest with us and caring for the eldest never ceases….even with him being in Supported Living it is always important to monitor their care, ensure their life is busy and fulfilled and communicate closely with the care provider and the local authority.

One has to accept and embrace the fact that in our case at least, and also in many instances, caring is a lifelong role, to ensure the wellbeing of your loved ones.

Apologies for the length of this but in the real world we hear similar tales constantly from parents and carers that find themselves at their wits end with nowhere else to go or nobody else to talk to. Our organisation and others like it may be able to listen, suggest other sources of support to pursue and frequently ‘steer’ carers to appropriate places but many more continue to live ‘under the radar’ – getting by in isolation and often ignorant of what help they can ask for.

Information is always the first thing carers talk about , not just the dry words on a page but what others have found works and have faith in.

My story

Like many people I never considered myself as a carer, just a parent with a disabled son

I have four children, all of whom are adults and as any parent will tell you, one never ceases to be a parent and there is often a situation where dad is called upon to offer a little help or support – that’s normal and I wouldn’t want it any other way!

I have a disabled adult son but he copes pretty well day to day and calls upon me only when he hits an obstacle that he finds confusing or difficult. This might be a bill that seems high, bogus callers to the home, spam emails that he has fallen prey to, help to find somewhere to live, lifts to hospital, finding a dental practice and so on. Until putting pen to paper I really hadn’t taken time to consider just how often and to what degree he needs my support and important my ‘carer’ role is.

Like most disabled people my son wants a paid job more than anything- he volunteers most days, has won awards and recognition locally and nationally for his efforts but when it comes to work the same old discrimination hits him. No he doesn’t have a good GCSE pass in   mathematics, no he doesn’t have a degree (nobody seems to care that he has proven himself in many voluntary roles, short term work placements etc).

Challenges

We cope day to day just like other people, finding out about things as we need to from friends, the internet and other media. This worked fine until we hit the spectre of disability related benefits being withdrawn. His benefits have allowed him to volunteer and even do occasional paid work (which is taxed and benefits reduced if sufficient hours worked), with the safety net of guaranteed income when hours are cut or jobs cease. Crass legislation placed this at risk.

After more than 30 years of encouraging our child to believe in himself and his abilities; like families across the land we found ourselves having to advocate, fight and challenge decisions made by ill informed and frankly, ignorant ‘experts’. Focussing upon his disabilities- not his strengths.

Thankfully, after seeking advice from a variety of services, including benefit specialists and even having to access a social worker to ‘assess’ his needs – (the first formal contact with social services in 30 years); we were able to get a reprieve!

He was assessed as having a learning disability with moderate level of needs- (not enough for any support now but when he moves into his own home he should get a few hours a day). This, along with other evidence, was enough for the bureaucrats to reinstate his independence. He was lucky, not every carer has the confidence or contacts to pursue the collection of such information. If he had been unsuccessful in his appeal we, the carers would have been called upon to prop him up.

The spectre of Universal Credits looms and who knows what that will bring?  Doubtless more time for mum and dad to state the obvious, challenge decisions, chase reports and gather evidence, proving that he is still (and will always be) impaired. All the time encouraging him, focussing upon what he can do and helping him flourish.

The future?

Lifelong carers of people with learning disabilities play a central role in their ‘childs’ life that extends through all aspects of life and from birth until they can no longer play a caring role.

Opportunities to learn about what support is available need to be available ‘on tap’ when and at a pace that meets the needs of the carer. While courses and information events are great ways to raise awareness we need a menu of training or information resources that can be accessed on a rolling basis. A parent of a twenty something may see employment and moving on as a priority while a parent of a fifty year old may have very different learning needs – having a menu that can be readily accessed and delivered at a pace and in a way that suits a variety of carers would be the ideal.

For some carers this will also serve as a means for them to gain accredited training that they can use to further their personal development and job prospects allowing us to tap into this unique and highly motivated resource at a time when recruiting and maintaining suitable competent care sector staff is getting very difficult!