An Unexpected Motherhood – the story of a woman with Down syndrome who has a child of her own

*This story was originally published in Voice The Journal of Down Syndrome Australia, Issue 1 2016 and republished with permission. I am the author of the original article* Times are changing rapidly for people with Down syndrome as every year more … Continue reading

How do children learn about difference?

I want to tell you a funny story about what happens when two kids who are incredibly advanced for their age interact with a kid who is developmentally delayed. I want to tell you this story because,

A) it was absolutely hilarious.
B) it’s a story of what happens when competition, ego and status don’t influence relationships.

First a little bit of background.

My sister and I are an interesting pair. Basically we are the same person but we couldn’t be more different. What I mean is, at our core, we hold the same values, same ethics and same outlook on life but we have always been a bit opposite in how we ended up there.

Growing up we fought like cat and dog. Only 18 months apart in age I was never quite older enough to assert full dominance of my superior age all over her and we were fiercely competitive in every mundane aspect of our lives. Who got to sit in front seat of the car, who got to push the trolley, who did our parents love more….(yes, I actually asked them that once)

I was the one who found school work easy and didn’t have to try too hard to get good marks whereas Sammy found it more difficult. Yet, she was the one who had a million friends by lunchtime and I was still working out how to keep the two or three I’d had for years.

She was short, blonde haired, blue-eyed and adorable and I was tall, lanky, and well….I guess my neighbour summed it up when she said to us...”Sammy will always be pretty, but one day, you will be beautiful”.

Thanks…
I think?

(I spent many years wondering if that “one day” had arrived yet!)

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We didn’t become friends until I moved out of home. As we moved into our separate lives as adults, married and became parents, we became incredibly close. Basically…we grew up…and now we understand who the other one is. I don’t talk to anyone like I talk to Sammy, both in a good way and a bad way! We still drive each other batshit crazy in the way we do things but deep down there is respect and an unbreakable bond.

She often gets the faltering voice on the end of the line saying “Have you got a minute to talk?” And I also answer the phone to hear “I just need to vent!” She is the one who tells me to get a grip when I’m losing rational thought and acting like a crazy person and I am the one who tells her that yes…on this particular occasion, I think you were wrong and you might need to suck it up.
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I’m not going to force him to be nice to people….and there’s a reason for that.

(A big thanks to Nykie of Mistral Photography for these beautiful photos of Wade!)

Recently Wade’s communication has been really taking off, and with it has come a new sense of independence and knowledge about what he likes and doesn’t like. He is more opinionated and his sense of humour is really coming alive! Now that there is a bit of to and fro to our conversations, it’s like he has more ownership in a conversation which is beautiful to watch.

We had a wonderful exchange this morning after he turned on the telly with the remote. It came on to a kids channel showing “Play School”. Wade loves pushing buttons so even though he is watching the show he likes or listening to a song he loves, he will still push buttons to turn it off or change the channel. He played with the remote and the channel changed so he came over to me, handed me the remote, pointed to the telly and said, “School”.
“You want me to put Play School back on?”
“Yeah”

This sounds like nothing but these kinds of exchanges are so remarkable when you think about it. A few months ago, he was just starting to speak, now he is not just copying what I say to him, he is using his words to initiate a conversation and get across how he feels about something. He has gone from the odd word here and there to hundreds of words, relentless attempts to copy full sentences, speaking in two and three word sentences and being so much clearer that people other than his nearest and dearest can actually understand what he is saying (or at least trying to say).

Photo by Nykie Grove-Eades of Mistral Photography

Photo by Nykie Grove-Eades of Mistral Photography

One “fun” aspect of his slowly developing language is the realisation that all those swear words I drop carelessly a into conversation have been softly landing in his memory bank. I discovered this through a recent bout of road rage as I heard coming from the back seat “Ah…SHT”. Now, this is a remarkable achievement for him and I should be celebrating because after three years of teaching him the word “Sheep”, we are no closer to him saying it. I have shown him flash cards, innumerable repeats of “Where is the Green Sheep”, soft toys, songs…all sheep related, all with me repeating the word “sheep” over and over but every time I say “What’s this?” I am told “Baaaaa”
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It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.
It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.
It’s not like that anymore. Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

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When parents are told prenatally their child has or may have Down syndrome, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.
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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….

I stood up for my son today and it felt good.

As a blogger, sometimes I feel like I talk the talk rather than walk the walk. It’s one thing to tell the world from the safety and comfort of my couch about respect for people with disabilities and it’s another thing entirely to tell it to someone’s face. I’ve written before about my difficulty in finding the right words when people use inappropriate language but I’m bigger and uglier now. Today I decided to step up.

I took Wade to the park to feed the ducks, today. I’ve been so proud of him lately. His communication and comprehension has been coming along in leaps and bounds since I’ve been home more and we have started using more sign language. We got out of the car and wandered over to the lake with our bread in hand. I was telling him about the ducks and he his signing “duck” all the way along the path as well as waving to every passer-by. After watching the ducks peck around his feet and listening to the sweet sounds of him trying to say “quack quack!”, we headed over to the play equipment. It’s such a great park because the designers have included many features for kids with disabilities. There are sensory areas and sign posts with the names of objects including the sign language and Braille. The swing area has a bucket swing for babies but it also has a full body chair swing with a harness for kids who need support of their whole body to enjoy it. I particularly like the slides as there is no ladder to climb. The slides go down a steep hill and the kids climb the hill to get to top.

Brimming over with pride I spent ages watching Wade scramble and scrabble up the hill to the top of the slide then get himself up to the top and sit down. He couldn’t quite work out how to shuffle his little bum off the edge so I helped him and then he went down the slide all by himself. He got to the bottom and signed “more” so I turned him around and told him to climb up. Up again he went then wandered off when he got to the top. He walked over to a guy to say hi and look at his shoes then stood next to a bush and experimented with stepping into the shade, then in to the light, then into the shade again. He let the bush brush past his hands to see what it felt like then wandered back to the top of the slide again. I was lost in the moment as I watched him looking out at all the people in the park and wondering what he was thinking about….

….then from behind me I hear “That’s the retarded swing for people like you!!” Continue reading

Words and Worth

Is there ever a time when the word “retard” or “retarded” is used without being offensive? Short answer…No.

We can have a linguistic argument about using it in its strict definition when referring to the delayed growth or development of something, but let’s be honest here….

That’s not how it is used…you know it and I know it.

The word retard is used as an insult. It is used to explain how useless and worthless something is. It is used to put someone down, belittle and denigrate them. This word has been used as an insult so comprehensively and for so long that the phrase “mental retardation” has been removed from medical use. Using the word means comparing something of no worth to a person with an intellectual disability. It means insulting someone by comparing them to someone with an intellectual disability.

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He’s no Super Hero

There is an odd little “Frankenword” getting around the disability community blogosphere.

Inspiraporn

It’s short for Inspiration Pornography. This (mostly derogatory) term refers to the concept that, in an effort to turn the tables on negative stereotypes around disability, proud, advocating parents thrust their kids forward as being somehow other-wordly, divine or more special than the average kid because of their disability. Think: memes about our kids or “feel good” stories about people with Down syndrome doing things like getting married and so on. It’s a concept that comes from a place of love but critics claim that this stuff sells our kids short and that stories of people with Down syndrome doing things that everyone else does should not warrant a spot on the nightly news.

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I have umm-ed and ah-ed about weighing in on this debate for the best part of a year.
Partly because I’m not great at drawing a line in the sand on any issue. I am always ready to throw out a working hypothesis in the face of new evidence to the contrary.
Partly because I do not like holding up another writer/parent’s opinion or work and encouraging others to pick holes in it and publicly berating them for their approach.
But mostly because I am certain that any stance I take will probably be proven to be totally hypocritical in more than one of my future or past posts! Lets face it, I’m sure there are several critics out there who would consider my entire blog to be Inspiraporn.
As a result, I have always opted for the vague, non-committal approach to controversial topics. I find it really hard to have a definite opinion on any issue. I can always see the pros and cons to both sides and I don’t like having to pick sides!! I always reserve the right to pick a little from column A and a little from column B.

However I can’t really let this one go through to the keeper….. Continue reading