Six and a half years ago when I took my toddler to a clinic and left with a diagnosis of severe non verbal autism , pica and global developmental delay my heart broke. It didn’t end there either. Six months later he was diagnosed with a progressive genetic condition. A year later he added vision impairment to his list. At seven he added an optic glioma, a form of brain tumour and at nine, epilepsy.
As I write this he is ten, with the developmental age of a one year old, the speech of a nine month old baby (he is non verbal), he isn’t yet potty trained and requires round the clock care. He has to be medicated twice daily to keep major seizures at bay. He needs six monthly MRI tests to monitor his brain tumours.
On paper his future doesn’t look good.
I have spent so much time breaking my heart for my son and all he will miss in life. He likely won’t fall in love, get married, have a family, have a job, learn to drive, attend college or university or live independently; all the things parents expect from their children as they grow. He can’t yet write his name, he’s never attended mainstream education and his care needs are so high I have been his full time carer since he was born.
So given all that information how can I possibly say my son has a bright future?
Quite simply this: Quality of life isn’t determined by what other people think.
I thought my child should find a partner, perhaps have a family of his own, get a job, drive, contribute to society in some way and make a difference. I thought he should go to school, perhaps onto college or university then find happiness and fulfilment in a career of his choice.
But who says any of this is a bright future? Who determines these things as quality of life?
In actual fact my son has an amazing future ahead of him, one very different to how I imagined, but even more incredible!
He’s never going to carry the burden of responsibility so he won’t stress about interest rates, taxes, mortgages or company shares.
He’s never going to become embroiled in complex relationships so won’t experience the heartache of divorce or family breakups.
He will remain blissfully sheltered from many of the awful things that life carries with it like murder, abuse, political turmoil, homelessness, drugs or wars.
His simple life will be the envy of many.
His needs will be met, either by carers or myself, for as long as I live. He has a sister who adores him and who I know will do all she can to make sure he is looked after too.
He will spend his future not in the drudgery and stress of daily commutes to work or long shifts but in doing what he loves most. He’ll be taken swimming, the cinema, cafes, shops, garden centres and day trips. It will be like he’s retired without ever having to have done the fifty plus years employment first.
Clothes and food will be provided for him. Other people will arrange whatever finances are required, drive him or support him in transport and make sure he is happy and well.
His future is, in fact, what so many of us would dream of. He will watch what he wants on TV, explore the world via google street map and see family often.
He will, as he already does, be surrounded by love, respect and support.
I’ll take him to as many lifts as he wants because his years of education will be complete.
I am not deluded. I am not just looking at life from rose tinted glasses. I am fully aware that my son will always need a huge level of care and that I may not always be around to give him that. I, more than anyone, understand how vulnerable and naive he is and always will be. I know i will fight budget cuts, endless complex forms to have control of his finances and health needs and that I will likely get little to no respite when he passes from children’s care teams to adult care teams.
This won’t be easy for ME but for HIM the future is bright.
We are so quick as a society to assume that anyone with learning disabilities, severe autism or complex needs is a burden. We see their quality of life as somehow less because it doesn’t follow the tradition path of higher education, work and raising the next generation. We see their inability to pay taxes as somehow awful and view them as beneath others.
My son, and thousands of others, walk a different path in life. They face a future quite different to that which we see as ‘normal’. Yet their future, their existence, their needs, are not in any way less or second class.
My severely autistic son’s future is full of life, love and fulfilment. That to me is the epitome of a bright future and quality of life.
I am looking forward to it and if he understood what the future was I know he would be excited too.