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This week (19th -25th August) is Learning Disability Week promoted by Mencap, raising awareness of the lives, experiences and successes of people all over the country with a learning disability. The theme for this year’s Learning Disabilities Week is ‘Superheroes’ and people are encouraged to share their own nominations and stories about their ‘super’ families online.
This week, the website MumsNet launched their campaign ‘This is My Child’ in support of parents of children with special educational needs. This is in response to the numerous stories shared by members about the daily discrimination and misunderstandings suffered by parents of learning disabled children. It seeks to inform and advise the wider public about the ways we can all be more accepting and supportive of ‘different’ children.
I meet and speak with the families of people with learning disabilities every day and I am often in awe of the tenacity and strength they need to enable their sons and daughters to have ordinary and fulfilling lives. A work colleague is the mother of a child with Down’s Syndrome and although she regales us with funny stories about how her child deals with the challenges of mainstream school, I know she has a constant battle to get the basic things she needs in terms of equipment, funding and time out for her other kids.
As carers, we can sometimes find ourselves being critical of families of the people we support. Often we are at the sharp end of their comments about the quality of our care, which we can feel is unduly harsh. We may judge the frequency they visit or the time they spend with their loved one – I have even heard care staff suggest that a parent had ‘abandoned’ their son when it was found the family had holidayed without him.
I would urge you to think carefully before you judge the way parents of the people you support behave. Their lives have been different; they have had their expectations and dreams shifted by their experience. They have possibly been left with little alternative than to ask for your help, and that in itself can cause them to feel inadequate and vulnerable. Take the criticism on the chin and make it easier for them to approach you by being open and fair. Share the good news as well as the not-so good about their relative; assist the service user to have regular and positive communications with their family. Remember birthdays and support the service user to send cards.
Whatever your views, you have to walk a mile in the shoes of families like these to realise what makes them ‘Superheroes’.
Virginia Tyler, RNLD DipNHM MSc – QCS Expert Contributor on Learning Disabilities