So many of us, when asked what we wish for our children’s future, reply: “I just want them to be happy”.  Money, a good job, academic success – all these things are secondary, really.  As long as our children are happy, that’s all that matters.

I agree with this, and have always said the same.  But since becoming the parent of a disabled child, I add an extra wish for my children.  I would like them to achieve a degree of independence.

It’s not something that would have occurred to me before; we assume that our dependent children will turn into independent adults.  But now I see that independence is not a given.  And a lack of independence makes people vulnerable.

Toby, aged six, doesn’t speak.  He couldn’t tell us if someone was abusing him.  Yet he requires adult help with the most intimate aspects of his care – changing his nappy, getting him dressed and undressed, bathing him and helping him to brush his teeth.  He is gentle and sweet-natured and doesn’t fight back.  He is extremely vulnerable.

At the moment, this is not an immediate worry for us.  Toby attends an excellent school, with extremely rigorous safeguarding procedures, and we know all the teachers and staff involved in his care.  Toby comes out of school happy and relaxed.  We are confident that he is being well looked after and should we have any concerns, we can act swiftly to ensure they are dealt with in a way we are happy with.

The worry is that in the future, unless we outlive our son, we are going to have to hand over our entire parental responsibility to someone else, or perhaps a collection of people, in a care home of some sort.

We don’t know how Toby will develop.  Aged six, he has the cognitive abilities of, perhaps, a one-year-old, so by the time he is an adult, this may have developed to a five, six, seven or eight year old.  Handing complete parental responsibility of a five, six, seven or eight-year-old to a stranger, or a collection of strangers, is a terrifying thought.  Toby may look like an adult by then, but he will be as vulnerable as a primary-school-age child.  And would we ever give complete responsibility of our primary-school-aged child away to a complete stranger?

To protect Toby and make him less vulnerable, I want him to be as independent as possible.  By this, I mean that I want him to be able to care for himself as much as possible.  I want him to be able to shout, loudly, if someone isn’t treating him as well as they should be.  If he can’t shout with his own voice – well, then we need to teach him to shout with whatever communication aid he can use.

Of course, I hope there is no abuse of the vulnerable in care homes.  Our adult children who live in care homes deserve to be treated with the dignity and respect that they would command when they lived with their parents.  I have heard of many positive stories of adult children happily settled in homes where they are treated extremely well, so I am optimistic about the future.

But now, if anyone asks what I wish for my children, I always reply, “for them to be happy – and to achieve as great a degree of independence as possible.”  And whenever I take Toby’s socks off for him, or absent-mindedly get him changed for the bath, I tell myself off.  Toby must learn to do that for himself!  He isn’t best pleased, but he chuckles and gets on with it.  He is, after all, a very sweet-natured boy.

 

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