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

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”

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.

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?

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.

The first light of speech

I’m trying something new with this post. Click the links to see some videos posted on the Facebook page that go with this story

Watching Wade develop is a bit like watching the sun rise. If I sit and watch the sky, I can’t really tell if its getting lighter. Minutes tick by and the world seems pretty much as it was and then all of a sudden I can see it. The sky is different. It’s changing even though I’ve been here the whole time.

Something has shifted in him recently. His speech is starting to take shape and his ability to communicate is coming along. It’s been a long time coming and it has made me doubt myself on more than one occasion. Sometimes it feels as though months have gone by without anything new happening and then all of a sudden I catch myself and say… “When did he start doing that?”

I’d love to know what it is that spurs him on to the next stage. I have a theory about him only being able to work on one thing at a time. (The jury is still out on whether this is a Down syndrome thing or a male thing!). But once he masters one new thing, he very quickly learns two or three more.

I shouldn’t be so impatient but as I start to see the gradual changes that are inching him closer to full language, I am getting excited about the conversations we might have. Earlier today I tried to put him down for a nap but he obviously had something on his mind.

Life is therapy too…

I’d love to be that kind of mum you see online, who has shelves full of interesting things that enliven and inspire their kids….but I’m not. I gaze wistfully at photographs of clean children engaging with wide-eyed wonderment at the quaint, colour coordinated activities devised by their talented mothers. I have evil fantasies of the 1,647 other photos taken before they FINALLY got one that looks like the kid is…

a) actually using the activity and
b) enjoying themselves.
(Yes, I’m spiteful like that…)

Sensory buckets, cloud dough, button snakes, flash cards…..I’ve seen them all. I keep trying them every now and then but Wade just isn’t into structured games (that are my idea…)

Setting up an ‘invitation to play’ in our house is an invitation to walk right past it and play with the dog instead.

A sensory bucket would only evoke the sense of me swearing under my breath as I pick a thousand tiny pieces of lavender scented crap off the floor after Wade pushes it off the table and wanders off to see if there is an unattended butcher’s knife within arm’s reach on the bench.

Normally I wouldn’t care, but raising a child with developmental delay means I am an expert in Mother Guilt. The minute Wade was born, a small portion of my brain was set aside, devoted entirely to being preoccupied with ‘Therapy’. I can’t avoid it…it’s built in. The fact is, we know that kids with Down syndrome benefit enormously from regular physio, OT and speech therapy. We know that when we teach our kids things they learn and the earlier we start, the better the results. I know that with persistence, consistency and patience, Wade will develop all the skills he needs to be an independent, functioning member of society….it just takes more time.

It’s a common complaint from parents of a child with extra needs….they don’t feel as though they are getting enough therapy for their child. Either there are not enough services available or there never seems to be enough hours in the day to rush between physio appointments or speechie sessions especially if their child has extra health issues that mean doctors appointments as well. I used to send myself crazy worrying whether I was doing enough for Wade but I have come to a bit of a realisation.

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.

StepUp! For Down syndrome is on and my sister is going the extra mile(s)

I’m a bit of a stick in the mud when it comes to awareness campaigns.  There’s no denying the effectiveness of some of them for raising cold hard cash..ice-bucket challenges, no make-up selfies and odd socks campaigns spring to mind…but while the share-ability of them is useful, I am always wondering how much pouring a bucket of ice on your head translates into a real and effective understanding of the condition it is connected to. 

In the Down syndrome community in Australia and in other parts of the world, one of the biggest events for raising funds and awareness is the annual StepUp! walk.  Previously known in Australia as the Buddy Walk (as it is known overseas) this event is one that that we have really embraced in our family.  I like it because it actually gives people an opportunity to understand the positivity and connectedness of our community.  This year will be our third walk and I am really looking forward to it.  The money raised from these events help to fund the local Down syndrome organisations.  In our case it is Down Syndrome Victoria who were instrumental for me when I was pregnant with Wade and told he would almost certainly have Down syndrome.  The services they provide to new parents in the early days right through to schooling, entering the workforce, living independently and ageing is fundamental to health, wellbeing and resilience of people with Down syndrome and their families.

In the time since Wade was born I have stayed involved with DSV helping to support new families, co-presenting workshops and I am on the editorial committee for Voice, the national journal of Down Syndrome Australia, too.  I know how hard it is to provide the kind of support needed to families with little to no ongoing funding!

The reason I like StepUp! over other awareness campaigns is it shows our community doing things that large parts of society still believes is impossible or unlikely for people with Down syndrome…living happy, valuable, productive lives surrounded by people who love and support them.  50 years ago parents who gave birth to a child with Down syndrome were routinely advised to abandon their children to an institution and ‘get on with their lives’.  Parents were told that their babies would amount to nothing, be unlikely to live very long, live a life of suffering and health problems. They were told they would never learn to walk or talk.  In the 1980s the life expectancy for people with down syndrome was 25.  Today it is over 60 and rising.  People with Down syndrome are not only living longer lives, they are living better lives too.  Advancements in health, therapies and education have removed a lot of unnecessary barriers for people with Down syndrome but there is still a huge one in the way…..the curse of low expectations from the people around them.

My family has always been an enormous support for us.  From the time we were given the first indication that our baby would have Down syndrome right up until today, I have known that they are 100% behind us.  Every year for StepUp! my sister Sammy, has found some incredible way to get people behind this wonderful event.  The first year, we engaged in a little round of sibling rivalry…..who could raise the most money for our team Wade’s Waddlers.  It got intense with one of us edging ahead of the other then falling behind at different times.  In the end sanity prevailed and I raised the most money!!  I think we raised about $200 all up and we were pretty chuffed.

The next year, she wrote personal limericks to everyone who donated as a bit of a laugh.  A bit of a Laugh??? she single handedly raised over $2,000 in three days and wrote over a hundred poems and posted them on Facebook as people donated to the team.  It was mind-blowing.  

This year though she is doing something wonderful and I couldn’t be prouder.  

What did I expect?

I’ve kind of missed the boat recently on some of the controversies swirling around in the media relating to Down syndrome. There has been no shortage of blogger fodder for me to sink my teeth into but we have been away on holidays and I haven’t been in the right frame of mind to weigh in heavily on the issues. I tried writing bits and pieces here and there but between intermittent wifi and holiday distractions I couldn’t get going. I did read the hoopla surrounding the comments made by Richard Dawkins and managed to fire off this tweet….

……but as I was trying to craft an intelligent and witty rebuttal to one of the biggest clangers a man of his intelligence could make, it dawned on me…. I was waaaay too busy having fun hanging out in New Zealand as a family, catching up with relatives, going on road trips, kayaking, sight seeing and sledding in the snow. You know….doing all the things that apparently shouldn’t be possible if we let ourselves be swayed by the opinions of people who have no idea what they are talking about. (In fact, according to Dawkins, I should have spared myself the “suffering” of this wonderful holiday and would have been much happier if I hadn’t been so “immoral” as to have given birth to Wade 2 and a half years ago. Gah!)

There have been so many things I wanted to expand on about these kinds of attitudes but the one concept I keep returning to is that of low expectations. The idea being that the biggest hurdle facing people with Down syndrome is the low expectations society has about them.

Because not doing it is harder.

My thoughts and emotions have been spiralling all over the place today. Today I read that an Australian couple chose to use a Thai surrogate to birth their baby conceived during IVF.  The surrogate was actually carrying twins, a boy and a girl and four months into the pregnancy, it was discovered that the baby boy had Down syndrome.  The Australian couple asked the surrogate to terminate the pregnancy but she refused.  After the twins were born the couple took the girl home to Australia leaving the boy behind with the surrogate.

Compounding the whole situation is the fact that the baby has a congenital heart defect.  Around half of all babies born with Down syndrome have a heart defect.  It is quite common and, in Australia, it is quite easy to fix.  The surgery, while major, is considered routine here with extremely good outcomes. 
In Thailand however, this surrogate is unable to afford the operation. A vulnerable woman tempted by a dodgy surrogate agent to make some money to pay off debt, is now left with a child that is not hers, a child she had no plan to raise without the resources to provide for him.  Without the operation, the baby will most likely die.  
There are so many horrendous issues surrounding this story not least of which is the practice of using impoverished and exploited women to birth a baby on the cheap… 
Telling the surrogate to abort the “unwanted” baby against her own religious and moral beliefs…
A dodgy surrogate agent refusing to pay the surrogate for the baby the couple didn’t take home…
The list of aspects to this story that breaks my heart goes on and on but the one part of this shitstorm that hits me the hardest is this…

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.