I will never forget the day I was told there were problems with my beautiful little newborn son. It was almost thirteen years ago now, but I remember the emotion as though it were yesterday. In one instant it felt as though my whole world had come crashing down.
I felt confused – I had all the testing and scans available throughout my pregnancy. I went eagerly to all of my appointments. Nothing unusual had been picked up and I was expecting the perfectly healthy baby I had pictured so many times in my mind. How could it be that now I was being thrown words I’d never heard of and names and numbers of specialists we needed to see? I had no idea the extent of his disability or what it meant for his future.
I felt guilty – I racked my brain for anything I may have done to cause this. I felt I had failed him. It’s a mother’s job to protect her child and I felt I hadn’t done that. The truth is, even though I know in my heart I did nothing to cause this, almost thirteen years later I still feel pangs of guilt. They are less frequent, but they are there.
I felt sad. So incredibly sad. I remember sobbing as I held my beautiful baby boy, wondering how we would ever get through this. I loved him dearly, but I felt so sad for him it literally took my breath from me. I’d been told babies can pick up on emotions and that I shouldn’t cry around him. I knew I shouldn’t, but I couldn’t help it.
Back to feeling guilty again.
I was literally torturing myself, but above all these merry-go-round of emotions, the truth is, I was mostly scared.
Scared of the unknown.
What would his life be like? Would he make friends? Would this affect his health or would he still live a long and happy life? Would he get a job? Get married? Have a family of his own? Be happy? Suddenly, all the hopes and dreams I had for this beautiful boy as he grew inside me, were clouded with fear and doubt.
It took me a long time to get my head around what was happening. To this day I am forever grateful for the wonderful family and friends I had – and still have – around me whose love and support pulled us through. A lot of people ask “how do you do it?” That’s easy. At some point your mother instinct kicks in. You simply do what you have to do for your child. You pick yourself up and deal with what’s in front of you for the sake of your baby. It’s what any mother would do, even if you think you couldn’t, I guarantee, you would.
Having said that, it’s true, raising a child with special needs can be tough. We have great days and we have really tough days, like every family. My son’s disability is physical as well as intellectual so the stares and pointing are really hard; they never get easy. For a while I wanted to just hide him away, not because I was ashamed of him, because I wanted to protect him.
We all know kids can be cruel but something I’ve learned along the way is that, sadly, so can adults. The amount of times I’ve been asked “what’s wrong with him” or had to whisk him away from stares and sniggers is too many to count. I was so saddened once to see an adult use the word “potato” in reference to children with special needs.
I try not to bite in these situations – I remind myself it’s that person’s issue, not mine, but every now and then it still gets the better of me.
Gradually, over time, and I’m not even exactly sure when, I realised that my son’s disability was a bigger issue for me than it was for him. It was me who worried about people staring, commenting or pointing; he didn’t even notice. It was me who was sad for him; he was perfectly happy in his own little world. It was me who worried for his future; he happily took each day as it came. It gradually occurred to me that he was everything a mother wants her child to be – happy and content in himself.
I no longer like to talk about the things he is unable to do because there are so many things he does so well.
He can make a person smile a second after meeting them.
He is extremely musical and can sing every word to just about every song ever written.
He just loves to sing and dance and is even happier if you will sing and dance with him.
He loves people; all people. He doesn’t see the colour of your skin. He doesn’t care what religion you are or if you are gay or straight. He doesn’t see differences he just sees people; and he loves them no matter what shape or size.
He is kind, loving and caring. He has more empathy in his little finger than some adults have in their entire body. If you laugh, he will laugh with you. If you cry, he will wrap his arms around you and cry too.
He has a fabulous sense of humour and loves to play and laugh with others.
I have been asked how other mothers can help those of us with special little/big people and I can answer that question with just one word.
Teach it, live it.
If you see a child with special needs at the park or playground, don’t ask “what’s wrong” with them. Ask what their name is. How old are they. If you chat to mum/dad/carer chat about the same things you would if it were an able bodied child they had with them. I’m not saying ignore the disability altogether but don’t make it the focus. Chances are, if you are friendly and providing an ear, the adult present will open up to you anyway. If your curious child asks questions, don’t feel embarrassed and whisk them away. I can’t speak for everyone but if it were me, I’d rather answer the child’s questions and let the children play together, than have them whisked off because mum or dad were feeling awkward.
If your child is lucky enough to attend a school with a special ed unit within, find out if there are any kids in your child’s particular year group. Invite them to play days and parties. Get to know them and their families too. Buy books inclusive of children with special needs and read them with your kids from a young age. Children are naturally curious or fearful of things they don’t understand; help them understand.
I could talk about my gorgeous boy and all the wonderful things about him all day but I have to finish somewhere, so would like to finish by saying this.
He doesn’t see himself as different. He is completely happy and content in his own company and skin. He loves himself 100% the way he is, and so do we.
I cringe when I think of times I wished his disability away or longed for a “better life” for him. I don’t see my little man as flawed at all. If anything he has taught me about the kind of person I would like to be because, I truly believe if the whole world were like him, it would be a much better place.
Guest Contributor, Nikki Morris – Inner West Mum