Families come in all shapes and sizes. At the heart of family life is love and when things go wrong it is the unconditional love which makes it bearable. Unconditional doesn’t mean soft!
The importance of a families support is never more critical than when new parents face the reality that they have a child with a long term disability or when an illness or accident change things for ever. I know because my family has experienced both.
My nephews were diagnosed with a life limiting disorder which gradually affected their mobility, speech, physical and cognitive function. I had a serious ski accident in 1984 and have had lots of other health problems. I’ve used a wheelchair since 1989 and for several years I was completely wheelchair bound.
In both instances what made all the difference is the support and care of family and friends. The support and care came in so many forms. At times it was just offering unconditional love, at others it was providing practical help, sometimes giving confidence “Of course you can do it” and at others the encouragement or challenge to do something new or keep going.
My parents would often go to stay with the boys whilst my sister and her husband had a much needed break. My Mum was great at noticing when to offer practical help with housework or washing and when to give them space. Just as important was being there, ready to listen, not offering an opinion or telling them what they should do but asking what they could do that would be helpful.
As a Head Teacher I was very aware of the danger of wrapping the disabled child in cotton wool. It is very tempting to try to keep the person safe and to limit any challenge. For me it is all about finding a way to help people feel empowered, to reach their potential and to challenge.
Getting the balance is important but too often people with disabilities are doubly disadvantaged in that they have to overcome their disability AND the low expectations of those around them. At times like this it is more about helping them find the way to succeed. There will be disappointments but surely that is better than not trying at all.