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 It’s an even bigger shock if the only thing you know about Down syndrome are outdated stereotypes and the cold, hard medical information falling unemotionally out of the mouth of the doctor standing in front of you.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….

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14 thoughts on “Is my story just a story…or is it useful?

  1. Hey Teesh. As a person who doesn’t desire children as part of her life-plan, I don’t know that it has made any impact on a pregnancy decision for me. (To be honest, the idea of getting pregnant at all really frightens me.) I also don’t know that it has changed my personal opinion or view of the way people with Down syndrome engage in society, but I think this is more down to my very wonderful friends and classmates when I was a kid. However, I think your story is important for the 90ish% (making up a statistic there) of the population who don’t ever meet anybody outside the bell-curve. The fear instilled in so many women about pre-natal tests’ outcomes is outrageous. I hope your story and little blog enlightens many people to the richness that diversity in humankind brings. I haven’t met Wade since he was a tiny baby, but I look forward to getting to know the boy and man he will become with you guys for parents.

  2. I can only give you an “in the club” perspective, but as someone who found your blog shortly after receiving a prenatal diagnosis, I can tell you that it helped me quite a bit. My husband actually found it first. After the initial shock wore off a bit and he started seeking out information and support, and your blog was one of the first resources he connected with and it was really was instrumental in opening up a dialogue between us. I believe you sent him a thoughtful personal email and that meant the world to him. Until that point we had been doing our processing separately and we began to talk about the future like me maybe we can do this. I think first hand experiences and stories were the most helpful then and still are now. There are so many different perspectives out there within the Down syndrome community and it can be overwhelming. Your blog was a comforting find because I think your worldview is similar to ours and we had not found that yet. And I was so wary that all of these positive stories were just a facade or coping mechanism. When I read your blog, I believed it. And you seemed to like your life and love your son and that was what I needed to hear then. Now it has been great to read and see your perspective and benefit from your experience as you are a couple of years ahead of me.

    I have thought about a lot of these same things in thinking about when we share our story or even just post photos of Owen to facebook and instagram. I wonder if our friends are expanding their hearts and minds to disability or if we are just an interesting story. I will be interested to read the comments.

    • Thanks Danielle. I remember first receiving the comment from John and feeling excited that someone who I wrote for was actually reading! I thought about your family a lot during that time and hoped you were doing well. I think it is really important to find stories from people who speak the same language or have the same outlook or else it is hard to apply their advice or scenarios to your world and make it relevant. I’ve been surprised by the common experience across people who would otherwise have nothing in common but at the same time I am always drawn to opinions from similar folk.
      Say hi to both your boys for me…

  3. Hi. My amazing daughter who has DS is now 26 so pre- googling, blogs etc. when she was born the hospital had an ancient pamphlet and that was it. I had to phone from my landline to ask Down’s Syndrome Association to post (with stamp!) info to me. Duly arrived with black and white photos. I knew nothing about DS and knew no- one who had it.
    If I wanted support from other parents I had to go to a monthly coffee morning of the local DS group. Or phone landline to landline – but are they too busy etc?
    I am sure blogs like yours really help people to see families just getting on with living, just with an extra special family member. It’s so easy to get sucked into this therapist’s programme and that medical person’s monitoring and forget to just be a family. How great to be able to post a ? On Facebook and get answers instantly from those who have lived through what you want to know. Or to reach out on a bad day and know others will totally understand!
    Best of all to see the colourful positive images of our children/adults, living their lives and achieving ordinary things as well as the extraordinary.
    When Katherine was growing up there were no positive images in the media etc so it all became ‘expert led’ whereas now seeing/reading about day to day stuff as well S the challenges and milestones I think it’s easier to focus on aiming for happy living.

    • Great perspective thanks. The Internet can be a double edge sword with information overload and no guarantee that any of it is actually correct but you’re right, it’s much harder without it. Knowing what we know now about the array of horror stories parents receive from medical professionals everywhere, personal stories help to make sense of it all. The benefit for parents in the ‘club’ is undeniable. I guess I am interested whether the benefit to everyone else is as clear cut. I suspect it is, it will just be interesting to hear those insights.
      Thanks.

      • I think of it all as a pebble dropping into a pond – the little ripple spreads outwards. If I post something – or perhaps more importantly, my other children, 21 & 17, post what they have done with Katherine – other people see these posts, comment etc then their contacts see etc. It’s such a different generation now among the 20 somethings and younger as they have had our children in their school, sport groups etc. When Katherine started her job at local hairdressers she was chatting and one of the stylists knew her boyfriend as she was at school with him. I had my hair cut other week and as I was having it washed I could overhear Katherine in conversation with others in staff room. If I hadn’t known it was her voice I really don’t think you could have picked out which person had DS as she was chatting about music, boyfriend, tv etc same as the other workers all her age.

  4. I can definitely relate to your intentions for the blog but wanted to say that regardless of what impact it has on society or people who have not had much to do with anyone with DS, as a parent who received a postnatal diagnosis of a child with DS, your stories continue to inspire and encourage me in so many ways. I share the same joys and concerns and it’s comforting to know I am not alone in this journey. Thank you for your honesty! I do look forward to reading more posts…

  5. As someone outside the club I find your story useful. I tripped over your blog from another one one day and I felt compelled to read back through your archives then realised our boys are about the same age.

    I probably haven’t changed my language about disability and certainly haven’t changed my opinion about the need for support to allow all areas of society to accessible to the diverse range of people that may choose to participate. This of course is mostly because my parents had a friend with a younger child with a range of physical disability that was increasingly severe over time. Maybe it’s just me or it might have been my age, at the time, but I don’t think I ever really made a distinction between physical and intellectual disability from the pov of limiting their potential to achieve what they personally wish to achieve.

    I don’t know at this point you have changed my view of Down syndrome as much as taken much of the chaotic blackhole of total unknown out of the idea of parenting a child with Down Syndrome. Although like your friend I would still probably be relieved the test came back neurotypically normal your writing means that having the test come back differently would simply be a sharp period of adjustment of what our daily normal might be like rather than outright fear, confusion and distress.

    I’m not sure if I would treat someone with Down Syndrome differently now. The few a fleeting brushes I have had suggest as a personality I don’t do well with the level of openness that is often exhibited but anyone would trigger that response DS or not so I am not really sure that’s what you mean. I may now attempt to hide my discomfort more but I certainly would still feel the discomfort of having those social boundaries crossed.

    Kind Regards
    Belinda

    • Wow! Thank you so much for your honest and detailed response. This is exactly the type of information I was interested in and I appreciate your willingness to share your thoughts.
      As much as I would love to launch sweeping ideological change across the globe every time I press “publish”, I guess I am realistic enough to know that isn’t going to happen! It is a hope of mine that my story takes a lot of the fear of the unknown out of the equation for people that we meet so I’m glad it has done that for you.
      We all have our triggers and social situations that make us less comfortable than others but from what you say, it seems that your feelings come from the behaviour itself not from the mere fact that someone has Down syndrome. I am hoping to change the minds of people who dismiss people with Down syndrome out of hand without knowing anything about what they might be like.

      Thanks again for your excellent contribution!

  6. Pingback: What’s the point of personal stories? | Embracing Wade

  7. I have read your article through a shared link re the Gammy issue. I haven’t changed any of my views since reading because you have nailed it! I hope many more people read your article and your blog especially expectant parents. I dispair that we are still hearing such outdated views and feel strongly that there is not enough information for parents facing a “desicion”. I have a cousin Matt 17 who is the 3rd child of my Aunt (we’re the same age and like sisters) she had him at 27 and his condition was unknown to her throughout her pregnancy. I have finally been lucky enough at 43 to have my own daughter now 20 months. I’d had 3 pregnancies miscarry so at the point we were due to have tests there was a lot of soul searching especially as I love someone with Down Syndrome so dearly but I only know what I know because of him. Clearly there is so little information out there, just statistics and even the well meaning shocked me with their ignorance when I discussed my feelings. Please keep writing as long as you feel you want to, your love for Wade, words and attitude can’t fail to “reach out” as they say, to people who are for most part well meaning but simply unaware.

    • Thank you Emma. I really hope so! It seems common that people don’t really understand until they know someone with DS. That’s why our message is so important.

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