The Chronicles of Autism, in which I decide it's ok to be sad
Today my first-born child, my adult daughter, has her birthday. As I reflect on the years that have passed us by, I’m drawn back to the hopes and dreams I had for her as I held her in my arms, as she toddled down the hallway on her way out to nursery, and later as she made her way through school and into the world of work.
We imagine the life our children will have, in our heads it’s often better than our own, more comfortable than our own, more adventurous than our own and yet, we can’t know the future.
My daughter is the proud mother of a profoundly autistic boy; I’ve written about him many times. And those who follow this series of articles will know that he is a funny, caring and very physical child who loves to be outside, to dress up, and to listen to his favourite stories. He is the love of my life, and I am his “Super Gran” but, when I think of my daughter, not as my grandson’s mother, but as my daughter, my little girl, and the life she has today, I can’t help but be a little sad.
Caring for a disabled child 24 hours a day, 7 days a week is a hard gig, it’s harder than you can possibly imagine if you haven’t done it yourself. It takes from you in ways you cannot imagine. Simple things like going to work, are harder. My daughter has somehow managed to hold down a part-time job, but how she has done it I will never know. Childcare for children like my grandson is non-existent, it’s a constant struggle, the stress is unimaginable. Attendance management processes no matter how understanding your employer may be, are only a short hop, skip and jump away, an ever-present worry.
Keeping on top of the household is impossible, she spends every minute of every day he is awake following him around to ensure he doesn’t hurt himself or destroy something she can’t afford to fix. The number of televisions broken and curtain poles he has pulled down, you simply wouldn’t believe. The cost of the destruction of her personal property is eye watering, but it’s the heart that breaks the most. Creating a home to see it broken, never being able to meet the standards you see in other homes, this stuff destroys your ambition and sense of worth.
And as for looking after yourself, how do you do that when you are lucky to get four hours of sleep each night? She is in a constant state of exhaustion, and yet, somehow finds the energy to take him to the swimming pool every day after school, because if she doesn’t do this, his energy is unleashed inside the home.
I sometimes hear the families and carers of people with autism say “oh I wouldn’t change their autism even if I could” – to those people, I say nonsense. This isn’t a life anyone would choose, not as a parent carer, and certainly not for the child. That said, there are wins and there is love everywhere. Together as an extended and blended family we are creating a world that tries to meet their needs, that is loving, and warm, and understanding, an environment that allows them to thrive as far as they can, but there are limits to this artificial world we have created. There’ll be no mountains climbed beyond the metaphorical, there’ll be no high-powered job beyond the high pressure she has today, there’ll be no home worthy of a Living North double page spread, no hobbies pursued of her own, there’s just no band-with for leisure pursuits.
And so, as I reflect on my daughter’s birthday, it may seem short of the life I hoped for her, but I think it’s ok for me to feel sad, as long as I also remember her resilience, her adaptability, and her determination to make the most beautiful life for her own child, and for that, well …… for that, the overwhelming feeling is one of pride.
