Some thoughts and comments shared with us by parents/carers in individual sessions, focus groups and within the Older Carer’s Group

‘Shared experience’

Feelings of concern and anxiety about the future

“Who will care for him/her?”

“Will they care for him/her as well as I do?” 

“What will happen when I am gone?”

‘Natural separation’ 

Typically developing young people begin to want to separate emotionally and physically from their parents. This is a natural process that generally begins in adolescence as the child tends to identify more with other young people rather than their parents and family. It can be challenging for all involved but as most parents will have experienced it for themselves when they were younger it is generally understood that this is what is happening and that independence is a natural goal as children move into adulthood within Western society. 

Separation of parent and a disabled child doesn’t happen naturally. Most young people with learning disability are operating at a younger age and continue to need the reassurance and support of their parent(s).and in some cases family members who have a caring role.  Some young people may indeed want some form of independence but need a great deal of support to develop the skills and confidence to be away from their parent(s) because of their learning disability. 

I find it difficult to have to talk about people with Learning Disability in terms of deficits (what they lack) but the concern and anxiety that parents experience is rooted in our understanding of the impact of our child’s cognitive impairment on their – 

• decision-making

• assessment of risk

• capacity to focus

• awareness of surroundings etc

“Typical young people start to move away from you, they get their own friends and want a life outside of the home. Our young people may want some of that too but they can’t always imagine it or articulate it”

“For my son, it doesn’t seem to be a concept he can grasp – too abstract – what he knows is being with us. In fact he becomes quite agitated when this is discussed at all” 

“Sometimes we are called ‘over protective’, but can people not see how frightening it is to imagine her out in the world, trying to cope and possibly being taken advantage of?”

“It often feels ‘one step forward, two back’, we practice a task, a routine and he seems to have got it but thenwe’ll go out and it is as if he never did any of it before”

By first identifying the challenges for parents in supporting their child’s independence from them we can also see the areas that need to be developed. We can think about the young person’s strengths and the adult child’s abilities and build on these.

However, we need to understand that before we can do this we have to acknowledge the very real fears and anxieties that we have as parents and work on addressing these as well. It may seem overwhelming at times - so take a pause, but remember it is a positive step.

Facilitators

Support parents to -

• identify the strengths and abilities of their child (whatever their age) to be built on

• acknowledge  the challenges the child faces and how this makes the parents feel

• spend time on addressing their fears and anxieties

• take small steps to reduce the risk of becoming overwhelmed