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 other the 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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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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