His name is James

Usually when a woman finds herself with child, she, her family and her friends, begin to draw up pictures in their mind of what that child may be like. This is what I call, The Fairy Tale Stage. This is for many, the most beautiful part of pregnancy. The hours spent in quiet contemplation alone imagining the baby that you will soon hold in your arms and the others spent with others discussing names and making plans for the kind of parent you're going to be. For others, it can become devastating, which is the side of the coin that is rarely spoken of.

My Fairy Tale stage was slightly different than those of the 'normal' parent. While I too dreamed of the beautiful baby, with brown eyes like his father and blonde hair like his mother, having been a child with issues myself, I did not expect nor dream of perfection. I knew that having a child at the very least brought with it the 50/50 chance that my child would be born with the same incurable disease that I was; Osteogenesis Imperfecta, or Brittle Bones Disease. Despite this, I was not entirely prepared for what did in fact happen.

My son was born in 2015. I was a young mother, barely out of her teens. He was wanted, by me, not necessarily by his father who already had another child he had abandoned. I of course thought things with me would be different, because I was naive.

I knew that my son was autistic when he was six months old. His father, normally unattached and living with only one foot in anything close to the real world, was the first to see it clearly. It's the one and only thing I have continued to give him a modicum of credit for.

When he was two, the meltdowns began. Meltdowns are not what parents of children without autism call tantrums. A tantrum is difficult, but meltdowns when they begin can feel utterly unmanageable. My son wasn't talking. He wasn't hitting any of his developmental milestones and I felt like my life had become entirely centred around him. Of course, every parent feels that way, but I was unable to partake in anything that one would consider 'normal.' I couldn't take him to the park, to restaurants, to parties. He and I were alone together almost constantly, save for my mother. His father, though we were still together, was less than helpful and was by this stage very abusive. Asking him to help with a night feed had almost resulted in my death.

I didn't have the coping strategies then that I have now. I knew what autism was, I understood that things with my son and for my son would always be different but I could never have known just how hard this life was going to be.

The system is slow to help. You feel as though you go through an endless merry go round of meetings and questionnaires where you answer the same things over and over again without ever receiving anything you could call help or support. It is incredibly lonely.

I went through all the stages of grief for my son. I mourned the loss of my Fairy Tale and had to learn to adapt to the new life I had to lead. I went through a period of denial as well. Even though I knew he was autistic, I didn't want to know. Not for myself, but for him. Life is already hard and no parent wants their child's life to be harder than it has to be. I was angry that this was happening to him and to me. I felt like I had already been through so much that this was unfair, a selfish thought I know, but parents aren't perfect. Sometimes we have selfish thoughts. I bargained with God, made promises to him that I swore to keep if only he would make my son 'normal.' The depression stage hit like a train. I cried whenever I was alone. I would watch him sleep and weep for what seemed like hours. Acceptance came late, but it came.

When he was around three, I finally found a professional that could help me, help us. She came from Action for Children. She visited with us for 12 weeks and was the first person who helped me to put strategies into place to not only help my son but to help myself. She said something to me that has since been imprinted on my mind.

"When you introduce him to people, you don't need to tell them he has autism as if it's some sort of fail safe to excuse behaviour they find difficult to accept. Who cares if they don't accept him? You do. Do you want to spend the rest of his life saying, 'he has autism and his name is James?' Or do you want to say, 'this is my son James, he is autistic?' The person he is has to come before the label society has given him."

James is the most incredible, intelligent and loving child. He has taught me more than I will ever be able to teach him about the world. James has shown me that it is not an individuals responsibility to find some convoluted way to gain acceptance in the world, but it is their responsibility to demand it simply be being in it. Just because we are perceived as unworthy or different or even damage, by society, doesn't mean that we are. The world should be what we make of it and those who love us, respect us and want to be a part of our lives have to find a way to exist in our world and embrace what makes us different. The stranger on the street that tells me James is too old for a pram, doesn't matter. Nor does the man passing by with his dog that thinks he's simply badly behaved because he witnesses two minutes of James' meltdown.

I grieved for the fairy tale I built in my mind. This is not something I feel shame for, because it was a natural process for me and for many others. I have found however, that my reality with my son, with my James, is so much better than anything I ever could have imagined. James didn't speak until he was almost five, but every word he has spoken since, has been sweeter to me than any music in existence.