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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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. 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

What do we Lose if we “Cure” Down Syndrome?

Yesterday morning I heard something that really made my blood boil for the first time since Wade was born. I got into the car to hear a local celebrity scientist on the radio discussing an item from the day’s news. Recent research has developed a technique for potentially shutting down the extra chromosome in the cells of a person with Down syndrome. The short term implication is the potential to develop new gene therapies to treat some of the health issues more commonly associated with DS such as hypothyroidism, leukaemia and early onset Alzheimer’s. The wider implication is that this technique may be used to ultimately turn off DS in the embryonic stage effectively “curing” it.

It wasn’t this in itself that made me angry, it was the description this scientist gave of Down syndrome. She called it a “devastating” condition. There was joy in her voice as she described how this discovery had the potential to eradicate DS all together. And I thought to myself…this is my son they are talking about here. Maybe I’m just an over protective mother ready to leap to the defence of my child (well, I was when I fired off my aggrieved text message into the station!!) but it also had me thinking about what is really at stake here.

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Continue reading

Milestone Junkie

As with every other aspect of my parenting story so far, Wade’s developmental delay has me swinging wildly from graciously understanding the reasons why everything takes longer to learn, to tearing my hair out over why he can do some things easily and not others.

Kids with Down Syndrome are usually characterised by some degree of developmental delay. When they are older, this is usually known as an Intellectual Disability. The reason for this is an Intellectual Disability is a specific, clinical term that is determined by an IQ test. When children are not old enough to be formally assessed this way, they are known to have developmental delay. Developmental delay means that our children can learn and can develop along the usual trajectory but everything takes longer to learn and often requires some specialist help along the way. This usually affects all aspect of development including the physical, the cognitive and the intellectual.

Before Wade was born, I remember being shocked at the approximate ages that children with DS achieve physical milestones. I couldn’t imagine a 9 month old unable to sit up or a 2-3year old unable to walk. It completely floored me. Like a lot of things I read during that time, this kind of information is general and each child develops completely differently. Wade, for example, came out of the gates racing. His gross motor skills were quite good. He has low muscle tone but he was quite strong and active. I would put him on his back and he would kick his legs about and wave his arms. It didn’t take that long for him to lift his head during tummy time and other DS parents and medical specialists were very encouraging about how well he was doing early on. This is when you get your first taste of that tempting, intoxicating parenting drug….praise. You get a high, you feel fantastic. Nothing gets better than this. Continue reading

The Cynic V The Anxious Wreck: a war story

From the day Wade was born, I have been waging an internal war about how to manage the competing feelings of wanting to do the best for him, yet not wanting to get sucked in to the heaving pile of guilt-laden extra “stuff” that society makes you feel utterly compelled to do for your child, whether they need it or not.

In the past, I have struggled with anxiety. Snowballing worries and being paralysed by indecision usually topped the list of how it manifested. The great paradoxical irony being that, before I met Mick and had Wade, the consequences of bad decisions were fairly minimal but the anxiety levels were pretty high. There was only me to worry about yet I found it extremely hard to move forward when there was no clear path or there were too many pros and cons to manage. Now, even though there is much more at stake, I find it much easier to manage the anxiety and make clear decisions. The turning point for me came well before Wade though, at the police academy, where I learned that when faced with an unfamiliar situation, you have to make a decision and do SOMETHING. Walking away is not an option because when you are standing there in the blue uniform, everyone is looking to you to fix the problem and even though you might not know the absolute best course of action to take, you have to back yourself and pick one.

It was the greatest lesson I ever learned. Continue reading