One of the most important and useful pieces of information that I was given after my son’s diagnosis of Autism, came from a mother who been through it all herself. She worked for the local branch of a charity that helped families cope with Autism. She told me to expect to go through a grieving process, and to expect it to take a year.
And it is a grieving process: As an adult (and even as a child) you contemplate what it will be like to one day have a child of your own. You have hopes and expectations for what they will be like and do. You find the partner you think will be a good parent one day, you marry, get pregnant, give birth, and through each step the hopes only intensify and become clearer, more real.
And then you find out what you wanted for them – even the simplest things such as being able to have a conversation with you, to have a job, to have kids of their own – may never happen. You also find out that they might never leave home, that until the day you die you will be responsible for someone who may never be able to say “thank you” or “I love you”. That most of your days you’ll be dealing with often violent tantrums, and will be unable to go out to places like zoos or restaurants, as a family. You grieve the loss of your future-life, you grieve the loss of the child you thought you had when it was born.
That might sound politically incorrect; to say you’re grieving the loss of a child when you find out it’s disabled. But it’s true, and at times like that what a parent needs to hear more than anything else, is the truth.
It was also vital that she had told me it would last a year. Months after the diagnosis I was telling myself to get over it – it could be worse, it might all turn out OK – all the platitudes I was hearing from those around me who hadn’t been through this (which I will expand on a later post; “Get Over It” Part Two: The Platitudes). But I wasn’t getting over it, and those words and thoughts were making things worse. It wasn’t until I was told to expect a year-long grieving process that I stopped beating up on myself for how dreadful I was feeling about my son and my life. I realised I had to give it time, I had to live my new life in order to eventually accept and enjoy it again. I had to feel whatever I was feeling each day, each week, each month, knowing that it was all part of a long and necessary process.
I passed this wisdom – about a year-long grieving process after the diagnosis – on to a new friend one day at the Autism Playgroup for preschoolers. She had only recently received the diagnosis about her son, and was struggling – as we all do – to come to terms with what it meant for her son and her life. After I told her what she was going through was OK – there was nothing wrong with admitting that it hurt like hell – she broke into tears. I let her say what she needed to say, share what she was going through, instead of interrupting with the same things I’d been hearing from well-meaning family and strangers for the past many months about how she should instead be grateful and happy and hopeful. We became good friends.
Autism is a bitch. Parenting an Autistic child is hard and exhausting and isolating. That’s the truth, though it may be cruel, it is even crueller to deny it and make a parent feel guilt for feeling what they feel as they come to terms with it.