Where I draw the line on therapy

The Down syndrome community is full of different parents all trying to help their child ‘meet their full potential’, but often they are at odds philosophically – so it can feel like a minefield trying to choose the right path for your child. Add in the Mummy Guilt over all the things you ‘should do’ or ‘should do better’ and this can create a hornet’s nest of passion, paranoia and panic. We know that kids with Down syndrome benefit from some therapy or interventions in the first few years of life…

But which therapies? And when? How much therapy, for how long and who from?

And does it actually have to be ‘therapy’?

Somewhere in the middle of the raging differences of opinion, I have to work out when to intervene in the health, development and education of Wade and when I have to step back and just let him be who is. How much of what I am trying to do for Wade is what all parents do for their children and how much of it is trying to change him to be more ‘acceptable’ in an ableist world?

By working out where my philosophical line is, I can stop the Guilt Train crashing through my life every time a new therapy fad appears.

What is ‘full potential’?

I see this phrase everywhere and it sounds pretty good. Who wouldn’t want ‘full potential’ for their kids? But what is it?

Trying to define it feels like trying to chase a rainbow. However, this phrase is used to justify the use of lots of different therapies.

Here’s the way I look at it…

My muscles have the potential to be five times their current size or larger (for argument’s sake). By not achieving this goal, I am not reaching my muscles’ ‘full potential’. That sounds bad and feels like I am walking away from some great peak of achievement.

But if I look at it another way, what would it take to make my muscles five times larger?

I would probably need to hire lots of professionals (like personal trainers and dieticians) and spend hours and hours a day in the gym. I would have to change my diet dramatically and that might involve giving up chocolate and wine (this argument alone is enough to make my point but I’ll press on!) I might also see a product online promising to increase my bulk and muscle mass by taking enormous quantities of protein or vitamin supplements. This product might not be available in Australia or been tested scientifically for safety and efficacy – but if other people are using it and it helps me reach my ‘full potential’ then I should take it, right? Because if I don’t, then I’m not doing all I could…

I don’t want my muscles to be five times larger. Sure, there are people bigger and stronger than me but does that matter? I go to the gym and keep myself fit but I draw the line on world body building domination because that is not a world I want to spend my time in. It’s not me and I’ve got better things to do with my life than tick that ‘full potential’ box.

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What is the cost?

Therapies are expensive but not just in terms of money…although that is definitely a huge factor. Therapies take time and they take energy and I know that I don’t have an endless supply of those. So, if I spend time, money and energy on therapies, that is time, money and energy unavailable for other things.

While the label on the packet of any brand of therapy will suggest that Wade’s life could be improved by using it, what the label doesn’t talk about is all the OTHER things I could have spent my time, money and energy on.

If there is no money for holidays or birthday parties or food for the week, that is something Wade misses out on. If I have to re-mortgage my house to pay for a program then that is financial security and time with mum he misses out on, because I will need to get two jobs to pay for it.  If I have seven appointments booked every week and I’m running to different therapists, that is time Wade doesn’t get to spend making friends at the park or investigating the fairies at the bottom of the garden, or learning to cook in the kitchen, counting the glow-in-the-dark stars on his bedroom roof, or any of  the other ways learning and development can be incorporated into his everyday life.

If I spend day and night buried in forums, groups and study papers trying to get to the bottom of the value in the latest therapy sweeping through the community that makes me tired; stressed and anxious; and not present in mind, body or spirit for Wade.

The other factor I take into account is whether the therapy stops me from being an instinctive parent. Programs that are too structured and regimented limit my ability to think on my feet and keep my eyes open for the ways that Wade develops in his own way, according to his own interests. There is no point in turning off the music that Wade loves, to spend time doing an intensive speech therapy program that he hates, when he could learn the same thing from his favourite songs if I make a few adjustments.

I decided a long time ago that physios, OTs and speech therapists are there to teach me. I use them to get an understanding of what we are working towards and a list of activities I can use to help Wade get there. Then I take those ideas home and incorporate them into our everyday life. This way, Wade gets to experience life as it is supposed to look, not from the inside of a therapist’s waiting room.

Signing up for every product and therapy that comes my way makes me feel like I look at him as being fundamentally ‘deficient’ and only the therapy will make him capable. This is a tricky one for me to explain where I draw the line but I’ll give it a go…

Wade does have a disability. It takes longer for him to achieve milestones and he does require more support. That takes extra time and a different approach for a kid who doesn’t have a disability. He does require some intervention and I need some help to learn some strategies…

BUT…

If the therapy resembles a steady staircase that we can step up to the next level, at our own pace and in our own time, towards a goal he wants to reach – then I’m into it.

If the therapy resembles us juggling six chainsaws on day one that we can never put down – then no thanks.

Also, if the therapy involves taking him for traumatic blood draws every few months to check how well all my therapies are working… and I have to hold him down while he screams and begs me to stop…then no. Down syndrome on its own is not a disease so I am not going to treat him like he has one. If that kind of intervention is necessary for an added severe health problem then that’s what needs to be done, but if it’s just in the name of chasing the elusive ‘full potential’ rainbow, then no.

What is the therapy and who is the therapist?

They are endless really.  The big wide world of therapy options feels like it could swallow you whole sometimes. It is impossible to do them all because…time, money, sanity…so I have to make a choice.

Here’s some of the things I think about when considering a therapy option.

If I’m using a product or a program, I want to know if it is going to be safe and effective. Especially if I’m handing over fists full of dollars for it.  If Wade is going to eat it, I want to check the quality of the scientific research behind it or known short and long-term side effects.

Red flags for me are claims about a product that are not supported by good evidence or practitioners that claim a product is supported by evidence when it is not. I am also wary of practitioners who don’t know the difference between quality research and pseudoscience.  I understand that not everything in the world can be backed by water-tight science but when someone is selling me something I at least need them to understand the limitations of their product.

When have I achieved it?

This question is the clincher for me. Let’s say, that I decide to jump in boots-and-all with multiple therapy types. Let’s say that I invest in intensive movement programs, reading programs, speech programs, communication books, diet modifications and supplements and everything in between…

When does it end? Does a flag pop up one day signalling FULL POTENTIAL REACHED! You May Now Go Back to Your Life?

Do I get to put away the supplements and leave the online groups, cancel the appointments and sit down to a nice big bowl of gluten – or will this just be his life forever?

Does ‘reaching full potential’ mean not being able to exist as you are without endless interventions? And what does that do to his sense of self and worth?

This is the line for me.

Can it be achieved in another way?

One of the biggest things I have realised over the past six years is that Wade will learn things whether we have seen a therapist or not. He is learning all the time. He reaches milestones and gathers new skills during times of doing regular therapy and times when we don’t. The key for us when Wade was younger was not how many formal therapy hours we crammed into the week, it was how therapeutic I made his everyday activities. I realised that therapy and products don’t need to come in a box marked ‘special things for special people’ before they will work.

For some reason:

My kid needs ‘speech development exercises’ while others sing nursery rhymes.

While I’m focusing on his ‘spatial awareness development’ as a baby, other new mums just play peek-a-boo.

Kids with a disability use ‘brachiation ladders’ while those without play on the monkey bars at the park.

Plus, these interventions usually come with a huge price tag and a comprehensive program to learn how to use them.

I realised that so much of what all parents do for their children is therapeutic. That’s why nursery rhymes, peek-a-boo and playground equipment have been around for generations – because they are good for kids. All kids! Wade might just need more of them for longer. He also may need a specific therapy type if he is having trouble learning something in the traditional way

– but infinitely more formal therapy doesn’t equal infinitely better results.

I have high expectations for him. I expect him to learn and grow and be a part of the world he lives in. But my role is not to change him so he can reach my idea of his ‘full potential’, my role is to make sure all the doors are open for him so he can go through the ones he wants to. For me it is the difference between the medical model and the social model of disability.

He is capable of learning and experiencing all the things he wants to just the way he is. His potential comes from his 47 chromosomes, not in spite of them. Nor are they something to be conquered, overcome or ameliorated.

This does not mean I’m giving up on him. It means the opposite. It means that I truly believe in him. Just the way he is.

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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.
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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 found true inclusion and now I don’t want anything less.

Rightly or wrongly I have decided that I want Wade to try mainstream activities first before we try disability specific ones. This is not a judgement on other parents choices, different kids need different things, it’s just the Plan A I have for Wade and then I’m prepared to go to Plan B if needed. But it’s hard to reconcile the high expectations I hold for him with the question that constantly rears it’s head in the back of my mind.

Are you doing this for him or for you?

It’s a challenge I constantly put to myself to try and keep myself in check when I plan a path for Wade. While it would be wonderful for me to high-five myself into next week for “achieving” full inclusion into 100% mainstream activities, it wouldn’t mean anything if Wade was struggling through them, constantly missing the message or just flat out not enjoying himself.

With all of that in mind however, I think it’s really important to ask “why not?” before I ask “can he?” when I’m choosing an activity. And so it was when I thought about swimming classes. I had thought about one-on-one hydrotherapy then I just thought…stick him in a class and see what happens.

When we first started, I was really apprehensive about it. Group classes…other parents and kids all much more physically capable than him. I wasn’t worried about how he compared to others…I know he has developmental delay and I don’t need him to be better than all the rest but I do need him to have the space and time to hear the instructions, and complete the movement in a way that doesn’t hold up the whole class. At the same time I need to give him the idea of what we are trying to do without rushing him.

We started at one class which was a disaster, the classes were disorganised and slap dash. Down syndrome had nothing to with it…I just hated the classes, so I decided to try Paul Sadler Swim School. Best decision I ever made. I went down for a tour and a chat and launched into the obvious about how Wade has Down syndrome and asked how much space would there be for him to learn at his own pace and blah blah blah….
It dawned on me quickly that I was the only one worried about Down syndrome here. It just wasn’t a problem. He was 18 months old but we would try him in with the youngest class and just see how he went.

His teacher, Alex was an absolute dream. We went at our own pace and I took my time with each element of the class and made sure that he was at least watching while I gave him a visual sign for each instruction. I constantly repeated the word for the movement at the same time as I was showing him. I was that crazy mother saying “Kick kick kick” over and over. There was this constant stream of noise coming from me as we did “monkey monkey monkey” then “swim swim swim”, “use your hands Wade use your hands”, but I really didn’t care. It was more important that Wade understood what we were doing and why. Each new milestone was met with huge celebrations and lots of cheering (from me mainly!).

Some days were easier than others and some days he loved more than others yet slowly but surely he started getting better. Alex would just appear to keep him on track and show him how each movement should look. Bit by bit over the last 12 months Alex and his other teacher Jacinda have helped me push Wade a bit further to test his skills and see what he can do.

When we first started we were given a big poster of all the levels that he had to reach before he could graduate to the kinder class. It seemed like a lot. Some of them he ticked off quickly and early, while others I started to wonder if he would ever do them. Every time he learnt a new skill we went home with a sticker to mark the occasion on the poster. I looked at the giant space that read “You have graduated to Kinder class” and wondered if he would ever get there. I couldn’t imagine him treading water, jumping off the edge safely or swimming without my help.

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He started getting more and more stickers and I realised that with constant reinforcement and a bit more willingness for me to let go, he was learning really well. I will admit to letting go a few happy tears the day I took my hands away from his body and realised that he was swimming….on his own…(with floaties and a belt)…and loving it!
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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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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

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.   Continue reading

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….

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……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. Continue reading