Letting Go

Most of us are from time to time aware of our own mortality but perhaps more so when our son or daughter has a disability; for who will care for them after we are gone?

My son Michael is now 28 and has Down's syndrome. For some years now I have been looking for a quality setting where he could enjoy semi-independent living which would enable him to experience life with a peer group doing activities young people would do as a matter of course.

My reasoning was twofold. By living away Michael would develop in many ways he could not do by staying at home (I would never expect his three siblings to be confined to life with Mum and Dad, so why Mike?). By making the transition now, I felt he would be able to adapt more easily and we as parents would hopefully be around for years to come to oversee his care and make sure it was of the best quality for his needs.

Secondly, by keeping Michael at home until we are infirm or we die I felt I would be doing him an enormous disservice as I would be leaving him to the mercies of whatever services were available, This, having experience of social care facilities over the years, has always been unthinkable. I simply could not bury my head in the sand and cross my fingers for his future after I'm gone.

Seven weeks ago I achieved my goal and Mike moved into a lovely house which recently opened. The staff are young and vibrant, the residents are well suited and the house itself is beautifully converted with en-suites and even a Jacuzzi. The transition has been amazingly easy and, most importantly, Mike is embracing it beyond our wildest dreams. He spends time with us each week but it seems happier time as he has things going in his "second home" so he is not reliant on us for all his entertainment.

For me as his primary carer, our time apart has given me the opportunity to do things denied for a long time and I am loving my new found freedom, secure in the knowledge that Mike is well cared for and happy but still very much part of our lives.

A weight has been lifted knowing that when we die (hopefully not for a long while yet) Mike will cope as it won't be the end of his world as he knows it, as he will have his own life just as his brother and sisters will, as it should be for all four.

In conclusion, to the professionals who always say parents/carers are the biggest obstacles in our youngster's lives, as we will not let go, perhaps if QUALITY provision was made more easily accessible and carers weren't forced to run the gauntlet of the authorities whose mandate appears to be to make services as difficult to obtain as possible, more of us could contemplate a future for our offspring without us always there.

To other parents I would say forget about preconceptions of institutions - we have moved on - although sadly not enough - there are decent places out there but do your own research because, after all, who knows your son/daughter's needs best?

Don't give up, you can achieve a future for your child but only if you continue to fight for it. Whilst we accept poor services we will continue to get them. I have no experience other than what I have gained over the 28 years of bringing Michael up, so if I can achieve it, why can't you?

Pat McDonald