Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.

John and Owen - photo provided by John

John and Owen – photo provided by John

I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.

Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.
Continue reading

Learning to be resourceful….and brave.

I’m not into New Years resolutions but this year I decided to make one. Not so much a quit this or start that type…more of a quiet mantra that I will return to as the year goes on. This year I want to be resourceful and brave. Because this year I will need to be. There’s a reason I haven’t written for months and I guess I just didn’t know where to start. You see, Mick and I have decided to separate.

It’s mutual, amicable and will be for the best in the long run but here’s the thing…it’s not particularly something that I want to write about because it’s personal and private but it will change how I do everything from now on….including my writing, my parenting and my ability to support myself and Wade. So even though it’s private, it’s kind of relevant to this blog and I’ve been at a loss to work out how to write from now on and still keep some of me for me if you know what I mean. I will answer the obvious question though….it’s not because Wade has Down syndrome. If anything, I think that is helping us stay good to each other during this process.

So, while the details of why we are separating are irrelevant here, I think the range of emotions and feelings I have been experiencing as I go through it reminds me of the feelings I was going through when I was pregnant with Wade. The similarities are so strong that it has given me a new perspective and a new understanding of what it means to face challenges and how useful sad and overwhelming emotions can actually be. Continue reading

It’s their loss….

There’s sometimes a big difference between how Wade acts when he is at home and when he is out in public. I’m certain this is not unique, in fact I’m sure this is true for children everywhere. I understand why….he is comfortable at home. Home is familiar and it is where he is safe and happy. Same for all kids I imagine.

The problem is, being out and about is the perfect opportunity to change some attitudes about what Down syndrome is. Don’t get me wrong, I don’t run up to unsuspecting people and dangle my child in front of their eyeballs saying “Look! Isn’t he amazing???” I don’t set out of my house on a “hearts and minds” mission every time I go shopping but if the opportunity arises, I like to take advantage of it.

So, even though I know I shouldn’t, I can’t help feeling a little disappointed when Wade doesn’t act like Wade when I want him to. It’s always the way….I find myself with someone who is looking at Wade as though they need convincing of his worth in this world. I sit there hoping that he will turn on the charm offensive transforming this skeptical onlooker with a bout of impromptu giggles and waves. Maybe dazzle them with series of signs and gestures extolling the wonders of the world around him. Instead, he often sits silently ignoring me…and them…. throws something on the floor or something else that confirms every stereotype this onlooker suspects about us.

I shouldn’t feel this way and I’m not proud of it. It’s not up to Wade to prove his place in this world. He can act like a brat if he wants to or stare out the window without worrying if he is going to undermine the entire global Down syndrome advocacy movement but I would be lying if I said it doesn’t annoy me just a little bit.

The first thought that comes to mind after an encounter like this is a sort of self-appeasing mantra that I say a lot.

“Oh well…their loss”

I say it because deep down I know he is awesome and they just missed out on seeing it. I thought it was just Murphy’s Law but something happened this week that made me realise Wade knows more about people than I do sometimes.

….and maybe, there might be more to it than I thought. Continue reading

What’s the point of personal stories?

A couple of weeks ago I asked the question whether posting my story online is useful to my readers or just mere entertainment. I asked it for a couple of reasons, not least being that I had seen another blogger do something similar and I thought it would be a really interesting exercise. I was curious to see what my readers are taking away with them and if the reality of their experience differs greatly from my expectation. I was particularly interested in inviting readers from outside the disability world to contribute and see if my story has an impact on those with little to no experience of Down syndrome.

I already suspected that publishing personal stories does have a positive impact on the people who read them (or else I wouldn’t publish mine!) but it was interesting to read why from other people’s perspective. I was thrilled to receive comments from a wide range of perspectives. You can read the comments at the bottom of the post here. https://embracingwade.wordpress.com/2014/06/24/is-my-story-just-a-story-or-is-it-useful/

A common thread that came through the responses was about finding stories that speak to us. A personal story can move us in a way that facts and figures just can’t.
We can read all the stats we like about improved quality of life and health outcomes for people with Down syndrome or how encouraging meaningful work options makes good economic sense for everyone but nothing gets a message across like reading about the reality of a situation through the eyes of someone who is living it. No matter how different our lives may feel, reading a personal story can make us find common ground we didn’t think existed but it can also help rationalise overwhelming thoughts when we read about others walking the same path as us. Continue reading

Is my story just a story…or is it useful?

I had an interesting experience a while ago when a person who knew my story very well and was completely on board with my philosophy about raising a child with Down syndrome enthusiastically told me that she was pregnant and all of her tests had come back ‘normal’ which was a huge relief to her…. I was happy for her, of course, but I couldn’t stop myself from thinking…

Do I achieve anything by sharing my story?
Or do people just grab a bucket of popcorn, read it and think quietly to themselves…
“Thank goodness that’s not me”?

Is the reader leaving with a different perspective or do people just like reading stories about other people’s lives as entertainment then move on?

There’s two main reasons why I choose to make my writing public rather than a private journal of my thoughts. The first is to provide another voice to the parents out there who have just entered our little club. There are a lot of stories out there but I guess I wanted to provide the type of voice that sang to me in those early days. I needed to hear from parents who could explain to me in minute detail EXACTLY how I was going to wrap my head around this thing. I wanted positivity that wasn’t wrapped in a sugar coating and a reality check of the challenges with practical advice, not wallowing in the depths of despair. I’m not a religious person so unfortunately trusting in God was not going to help me much either. It was also very helpful to hear from parents who admitted their faults and swore a bit…..!! I believe that a variety of voices are really important and no one gets all their information from one source but I hoped that my story and my style might connect with some new parents at a time when their heads were swimming after diagnosis and provide them with a port in the storm.

Being told prenatally that your child may have Down syndrome is a shock. It’s an even bigger shock if the only thing you know about Down syndrome are outdated stereotypes and the cold, hard medical information falling unemotionally out of the mouth of the doctor standing in front of you. (This was not my experience and I am forever grateful to my midwives for their compassionate professionalism with us but it is the norm for most parents, unfortunately…). I hoped, that if people found themselves in a similar situation, they might have a lot more up to date and positive information available to them after reading my story so that a diagnosis of Down syndrome did not have to be a bad thing….just a different thing. I hoped that people might be more empowered to make their own minds up about how they feel rather than feeling pressured by the medical world to see their pregnancy as a long list of ‘complications’.

The other reason I write publicly is pure self interest…. I want to make the world an easier place for Wade to live in. I am realistic enough to know that unless society’s attitude toward disability changes, it doesn’t matter how much work we do to give Wade the life skills he needs to exist in this world, he will never be truly accepted. I want to show that people with Down syndrome are more capable than people might think. To dispel some myths and remove some barriers so that with more understanding comes more acceptance and Wade stands a better chance of leading a life he deserves.

I wanted to join the revolution of new parents who are joining together to tell the world that raising a child with Down syndrome is not the end of the world and has its own unique rewards and benefits as well as the challenges.

One trap that you can fall into when you write in the disability world is remaining within that world….preaching to the choir. It’s wonderful to write amongst like minded people with everyone nodding in furious agreement about the topics we raise but I am really interested to find out what effect my story has had on people with little to no previous experience of Down syndrome in their lives.

So…I am crazily bravely going to ask you to tell me….

Has my story changed the way you view Down syndrome?
If you were to meet a person with Down syndrome now, would you treat them differently than you might have before?
Do you have a different view on the inclusion of people with a disability into schools/workplaces etc?
Have you changed the language you use to speak about people with a disability?

This one is very personal, but….
Has my story changed how you feel about potentially having a child with Down syndrome?
Would you feel better informed when dealing with doctors during a pregnancy now?

I guess I just want to know if personal stories can affect change or if they are just a good read…..

A few important points about this…. This isn’t a fishing exercise for compliments, (although I’ll gladly accept them…!) I am comfortable accepting difficult and challenging responses too and I will approve all respectful responses on the post. If you would like to contribute without your comment being published then say so at the bottom of your comment or you can email it to me instead. I will probably write a follow up piece at some stage discussing the range of responses (assuming I get some!) but I won’t identify anyone who wishes to remain anonymous.

If I receive any trolling or hate speech which is obviously intended to offend it will not see the light of day and I will spend as much time thinking about it as it takes me to push “delete” so don’t bother wasting your time…

I got this idea from a wonderful blogger Jen Jacob over at Blessings Beyond the Ordinary who does amazing work supporting new parents by co-writing a book “Unexpected”and co-establishing an online resource “Down Syndrome Diagnosis Network” in America. Thanks Jen….