see the person, not the disability

I remember clearly going in for my 12 week ultrasound with all 3 of my children, nervously waiting (which not only seemed forever, but was forever, what is it with OBGYN’s and running late? Oh yes, I guess they may have babies to deliver at all hours of the day!) I remember climbing up onto the scanning bed, my nervous looking husband pacing the floor, waiting for our OBGYN to come in the room. My palms were sweaty, I glanced around the familiar room, I had already had several scans by this stage due to previous miscarriages. I knew there had been a heartbeat in my other ultrasounds, but I had lost a baby at 12 weeks before.

The 12 week scan is often for many women the first time they see their tiny little person on the screen, hear the fast pitter patter of a heartbeat, but it is also the scan where we have the first opportunity to check for any congenital defects in our unborn baby, a scary thought, and a nerve racking time.

The 12 week ultrasound can be a very exciting experience, and is always memorable, hopefully for a good reason, the scan will confirm the baby (foetus, some prefer), is alive and has a healthy heartbeat, check for multiples, (now that would be memorable I’m sure), assess the baby’s size to confirm dates are correct, and measure the amount of fluid in the skin at the back of the neck, (nuchal translucency). Your baby will also be checked for any other obvious abnormalities. There is nothing quite like the relief of hearing that heartbeat, it is like a release of all the built up nervous tension you’ve been carrying around for weeks, and hearing your baby is a healthy size, and has no signs of abnormalities is like the cherry on the cake, or a big dollop of cream with a chocolate flake in it!

In a perfect world this is what we would wish for all new parents, unfortunately we don’t all hear that news. So often we don’t wish for average, we want our children to shoot for the stars, but when we hear those words, that our unborn baby is the average size, and has the average heartbeat, it is exactly what we want to hear.

It is difficult for many parents to imagine what it would be like to hear the words “your child has a disability”, whether it is during pregnancy, or after a child is born, these five words change the life of thousands of parents in Australia every year, leading to feelings of grief, despair, desperation, and confusion. What most would never expect is that they can also lead to a life of unexpected highs, and more joy and love than they ever believed possible!

Disabilities range from minor limitations to severe limitations. The financial strain on the family can be huge, with one parent usually having to give up work in order to become a full time carer. But it is not just the financial difficulties that these families face, the physical and emotional costs of years of ongoing full time care can lead to devastating impacts on the relationship between parents and other children in the household. Over a third of primary caregivers report that their marriages are strained, and many other families break up due to couples having limited alone time together, (if we find alone time hard with children without disabilities, I can only imagine how hard it would be in these cases).

When Caroline’s son was diagnosed at 2 with autism she went into a state of disbelief, she searched high and low for cures and new ideas to help her son Christopher. “I denied it before I could accept that this was happening to my beautiful boy, to my family”, she describes how she had to grieve the loss of the son she thought she would be raising, “we already had a six year old son who was healthy, I knew Christopher would be different to his brother, but I thought they would be good mates, I thought we would be a family with two boys playing cricket, fighting, and being there for each other when the going got tough. When we found out we were expecting another boy we planned camping trips and fishing, but life didn’t turn out that way”. Caroline’s life was thrown into turmoil and the once working mum became a full time carer to her son, her day filled with treatments and therapies for Christopher.

One of the hardest things for a parent of a child with a disability is the judgement and stares from other people. Most of us have had our toddler throw an almighty tantrum in a shopping centre and felt the unwanted stares or judgement of other parents. For some parents of disabled children the looks can be difficult. Sarah, mother to 7 year old daughter Ella who has down syndrome says she finds it offensive when people actively avoid her, “people don’t know where to look, or what to say to me, I have been at parties where people avoid making eye contact with me, it’s like they are afraid of saying the wrong thing so they say nothing. Yes Ella has a disability, but she is still a little girl who loves to play, can laugh and dance, and also get cranky like any other 7 year old girl. And I am just a mum like any other mum, I would rather people ask me if they have questions, anything is better than being avoided”.

Being a mum comes with ups and downs, every single day, and mums of children with disabilities are no exception, as there are lows, there are also highs. Although a third of marriages are strained due to having a child with a disability, a third are also brought closer together due to their new caring role. Caroline says, “after we accepted the diagnoses and learnt ways to help Christopher, we began to find comfort in having each other. We had to adjust and find new ways of spending time together. We actually stopped watching TV as much and started spending quality family time as a couple, and with our sons”. Sarah admits that there has been some strain on her marriage, but also says that Ella has brought them more joy than they ever knew possible, “at times I feel really lonely, almost isolated”, says Sarah, “but then Ella does something delightful and I can’t stop laughing, my husband looks at me and I just know we are both feeling so lucky to have her”.

Remember that we can make a difference to these children and their families by educating ourselves and our children too. People with disabilities can go on to achieve amazing things, things that most of us without disabilities would dream of achieving ourselves. Just look at the Paralympians! Beethoven was deaf, Stephen Hawking has Motor Neuron Disease and is one of the smartest people alive, and Marla Runyan is blind, but hasn’t let that stop her from breaking records and winning several gold and silver Paralympic medals!

If you would like to learn more about the paralympics go to http://www.paralympic.org.au/sports

If you would like to know more about autism spectrum go to http://www.autismspectrum.org.au/

To find out more on down syndrome go to http://www.downsyndrome.org.au/

Thanks for joining me, love Mackenzie xx

I would love to hear your thoughts and stories, feel free to leave a comment below, please share this blog to help support those with disabilities.