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.
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…
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.
Other red flags are practitioners that claim that their therapy is the only one that will work, that their protocol must be followed to the letter and that I can never stop. This feels more like a cult than a therapy to me…
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.