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This post is about how to tell if your child with Down syndrome needs therapy. It is written from my perspective as a mother of a child with Down syndrome. That I am deaf and come from a disability-advocate standpoint, I am sure also affect the perspective from which I write.

How to Tell if Your Child with Down Syndrome Needs Therapy

Does your child need therapy? 

That’s such a loaded question in some ways, with the stacks filled with arguments that are culturally and socially based. From the moment our kids with Down syndrome are born, they are assessed, probed, weighed, measured and held up to the Medical Model of disability to see what they are lacking in.

The Medical Model of disability is really important in understanding where the medical system and our culture are coming from with regard to our children with Down syndrome.

The Medical Model of Disability

The Medical Model links the diagnosis to the body, with a clear call that disability needs to be cured. In other words, the Medical Model says that the person with the disability is the problem and needs to be fixed.

The Medical Model sees us with disabilities as fundamentally broken. 

The Social Model of Disability

In stark contrast to the Medical Model, the Social Model  views disability as culture, and sees value in disability.

The Social Model says that the body isn’t the problem, it’s the environment. If you make an environment accessible, if you remove barriers (both physical and attitudinal), the disability is not the lodestone that the medical model makes it out to be. 

Those of us with disabilities usually prefer the social model, because:

  1. it’s true: if you remove barriers and make the world accessible, disability really isn’t such a big deal and
  2. it’s a hell of a lot more empowering to view yourself as whole and as who you should be as opposed to some broken machine that needs fixing

Does the Social Model Say “No” to Therapy?

The social model says that disability in and of itself is fine. It’s the environment that needs fixing. But that doesn’t mean that tools shouldn’t be used to improve life!

Take myself for example: I am proud of being deaf.

I firmly believe that while being deaf can definitely be challenging in a hearing world, I like being deaf. I like my perspective and enjoy my world.

I use all the tools that I can: I use hearing aids, I use ASL. I lip read.

My subscription to the social model of disability does not preclude the use of hearing aids. I can be deaf-proud AND STILL use hearing aids and lip read. 

Down Syndrome, The Social Model and the Medical Models of Disability

Down syndrome has typically been included in the Medical Model of disability. It has been something viewed as needing to change, that people with Down syndrome should be more like people without Down syndrome.

The goal with Down syndrome is to make people with Down syndrome “realize their full potential” which is often code-speak for “as highly functioning as possible.”

This means the goal from the moment our kids are born is to make them more like typically-developing people.

From my perspective as a deaf woman, there are clear analogies here with the deaf community – the goal, after all, with most deaf babies born to hearing parents is to make us more like the hearing than the deaf. We are fitted with hearing aids or cochlear implants; we go through years of speech therapy, lipreading and are drilled and trained to be ‘high functioning’ deaf in an oral, hearing world.

The ASL movement is relatively young. We are now seeing value in striving to be less like the hearing and more like ourselves. We are deaf and no matter what type of hear-ware we might use (if any), at the end of the day, we take them out and our world is silent. It makes more sense to embrace that and to move forward from that platform of pride and honoring who we are, than it ever did to bend over backwards and try to be more like hearing people.

Because we won’t ever be hearing.

People with Down syndrome Will Always Have Down syndrome

No matter how much therapy a person with Down syndrome engages in, they will always have Down syndrome. This is a fact. That extra chromosome that causes Down syndrome can not be removed.

So you can use therapy as a tool – like us deaf might use hearing aids or cochlear implants – but it won’t ever change the fundamentals of the person.

Rather than trying to change that, it makes more sense to lean into and embrace the Social Model of disability by using the tools that therapy provides while learning more about Down syndrome itself, appreciating what what the syndrome brings to our world. and finding ways to accommodate it so that individuals with Down syndrome can be full accepted, contributing and included members of our society.

Our Story: Moxie, Early Intervention, Physical & Speech Therapy

I want to talk about our story for a bit, because all of these truths that I’ve just written about are actually hard-won.

When I first had my daughter, I knew nothing about Down syndrome and was bumbling about following what the doctors and the system were telling me. They said, “therapy!” and I jumped to it.

Early Intervention and Down syndrome

“Therapy for a child with Down syndrome is critical!” they told me, and that “early intervention” and Down syndrome were super-important for my daughter to reach her “full potential.”

You know, like, if I didn’t have a specialist come to my house 3 times a week and watch my kid have some tummy-time, she’d be sitting in a corner helpless and non-functional for the rest of her life.

I think that’s where the medical establishment gets us to buy into the Medical Model: we are so scared that our kid will somehow miss the boat and it will be all our fault. We didn’t do enough therapy; we let our child miss their tiny, narrow, sliver of an opportunity to reach their “full potential” and be more like us – without an intellectual disability – than not.

I bought into it too:

Down syndrome and early intervention

My daughter started early intervention at around 4 months old.

It was stressful for me having the therapists come over with their clipboards and notepads and observe and note everything my child was – or was NOT – doing. I was confused as to what or how any of what was going on was any different from what general good parenting was, because it sure looked the same to me.

I felt like there was so much focus on what my daughter could not do that it was depressing for me.

I ended up going to a different group, one in which there was also counseling for all of us depressed parents.

Meanwhile, my daughter started physical therapy.

Down syndrome and Physical Therapy

People with Down syndrome have low tone so physical therapy usually starts very young.

Down syndrome and physical therapy

When we first started physical therapy, I was adding up all of what was going with early intervention (- the assessments, stress, the depression from the negative assessments, confusion over what was actually being worked on or strengthened) and was finding it lacking. I was starting to lean on the side of quitting everything just so we could be happy.

Down syndrome and physical therapy seemed like a real joke, given that my daughter couldn’t even stand up!

But just going there was a blessing in disguise because our physical therapist had a niece with Down syndrome, and was very much aligned with the Social Model of disability.

Our physical therapist was only trying to provide my daughter Moxie with tools by which she could enjoy her world more. She was encouraging and motivating, always noting and highlighting Moxie’s accomplishments and positives. That felt awesome.

Right around this time, we started driving down to Mexico and camping for extended periods of time on the beaches there.

down syndrome and physical therapy

Moxie was crawling up and down sand dunes, crawling to the water, playing for hours in all that sand.  It was also in Mexico that she started cruising, standing up and walking while holding supports.

When we came back to the US, our physical therapist said that we were doing the best thing we possibly could for her development, that crawling up and down sand tunes and cruising in sand was helping to strengthen her pronation and ankles than the exercises she was getting in physical therapy.

I was encouraged with this, and started to ease off on following everything that the establishment was telling me to do with my daughter; I started listening to my own gut a lot more, and doing what I felt to be true and good for her as opposed to what someone else was just telling me I “should” do.

We continued with a modified physical therapy schedule for a year, then stopped completely when we left the San Francisco Bay Area.

Down syndrome and Speech Therapy

I have taught Moxie ASL all along, but I have been concerned about Down syndrome and Speech Therapy. When an individual with Down syndrome cannot be understood, it can be an actual life-threatening risk, as we have all learned.

With regard to Down syndrome and speech and therapy, I’ve been laser-focused on Moxie’s articulation and ability to convey her thoughts with speech, using ASL as back-up.

We lived off the grid (in a yurt to boot) for 4 years after we left the San Francisco Bay Area.

Down syndrome and speech therapy

Now, the off the grid and yurt-living piece had nothing to do with this, but maybe it does. I know that living and thinking so far outside the box has had an effect on her, just as the fact that we lived in a very rural, wild-west type of community on the Lost Coast of California.

The community itself helped Moxie – our 40-year old neighbor had Down syndrome. He was an intrinsic part of the community; a yogi, ASL teacher, school janitor, and respected artist. The fact that the community was used to people with Down syndrome being successful was huge for my daughter – huge! 

Added to that, an excellent speech therapist drove the 4 hours (round trip) to work with her, twice a month, as her IEP set up.

This, along with horse therapy had both her core and articulation being strengthened.

While all of that was awesome, nothing got Moxie talking like her younger brother learning to speak.

The Role of Siblings and Down syndrome

Siblings play a crucial role with regard to the development of an individual with Down syndrome.

siblings and down syndrome
down syndrome and therapy

In Moxie’s case, she is highly competitive, and always has been.

When she sees someone who is comparable to herself doing something that she – up until then – couldn’t do, she revs up and DOES IT.

When her little brother started talking, Moxie – who, up until that point, had been a kind of relaxed learner – started cranking up her words and sentences. She went from a few words to speaking full sentences shortly after her brother did.

Her speech therapist said that her brother and peers in school were going to be the best things for her in terms of motivation, and I know he’s right.

After this shift, we another shift: our family split up with divorce and we moved first back on the grid, to town. A few months later, we moved back to Hawai’i.

Where is 8-year Old Moxie Now, Developmentally-Speaking?

Moxie is in an inclusive 2nd grade class. She is reading and writing, completing math and science with modified lessons. That means that they make it a little simpler for her, and she might need to accomplish less work to be considered “on task.” She has an assistant and received occupational therapy once a week at school and speech therapy twice a week.

She just started Special Olympics.

down syndrome and therapy

Moxie is what I call a “Sporty Spice.”

She likes sports and has always been my more athletically-gifted child. She’s coordinated, has stamina, and enthusiasm for pretty much anything, physically-related. She’s a great swimmer and boogie-boarder.

down syndrome and therapy
down syndrome and therapy

She enjoys a close and loving relationship with both of her brothers.

A lot of people think that Moxie is “high functioning” – but I don’t think that’s necessarily the case. I think it’s pretty clear that Moxie has Down syndrome and my goal has never been to make her more like us without intellectual disabilities.

Rather, my goal has been to figure out what tools will help her live the life she finds most pleasing, and which will also help keep her safe.

I feel that all too often, the medical establishment and we in the Down syndrome community are quick to look at one aspect or another in a child’s development, and don’t look enough at the whole picture that makes up the “nurture” part of the package.

Factors that I think that are important to consider in my daughter’s life – factors that I think contribute to her development are:

Health:

  • No health issues
  • No hearing issues
  • No visual issues
  • breast fed for 2 years
  • home birth
  • no supplements or drugs of any sort
  • healthy food for the most part (but not organic)
  • co-sleeping

Family:

  • Brothers older and younger than her, close in age
  • Single parent household
  • Educated mom, middle-class, white privilege
  • Non-traditional environments (- off the grid, rural communities, lots of travel)

Other:

  • Good looking
  • Artistic
  • Physically coordinated

I firmly believe that her good looks and physical coordination have a role in how people treat her, and thus, in her overall development, so had to mention that (even though it felt a little weird).

I also believe that things like being breast fed, co-sleeping, eating healthy food have something to do with development (how much, I’m not sure, but I know it’s something).

Health issues are an integral part of the equation.

Does Your Child with Down syndrome Need Therapy?

We’ve covered the Medical and Social Models of disability. I’ve told you some of our own story. I’ve included the things that I think are important considerations in how a child (with or without Down syndrome) develops.

I think it’s time to get to the question that drew you to this post in the first place: how do you tell if your child with Down syndrome needs therapy? And what type of therapy makes sense for your child?

First of all, I think it makes sense to really think about where you are coming from in this: are you being pushed by anyone to engage in therapy? Are you wanting to make your child more like someone without an intellectual disability, or are you wanting to give your child tools?

There is no judgement in asking these questions.

There is, however, a need for us all to be honest with ourselves – to ourselves – in our answering of the questions, because the honest answers will tell us a lot about about what type of therapy makes sense, if any, for our children.

Also, closely examining the “nurture” aspects of what is going on with our children will also help us.

Does Your Child:
  • Have siblings? And if so, are the siblings close in age? Typically-developing?
  • Live in a household that access to resources?
  • Are you/your partner able to implement things that are typically regarded as helpful in child development on your own?
  • Does your child have health issues? Hearing/visual issues?
  • What type of environment is your child in? Creative, supportive of risk-taking, able to move, explore?
  • What is your child’s personality like?
  • How does your child learn best? Through imitation or hands-on; visual? Aural?
  • How well-regarded are the therapists and the services in your area? Have you met them? Observed them at work? What did you think?

These are questions to ask yourself with regard to therapy and your child. I think the most important question is that of health: if  your child  has health issues – heart, respiratory, seizures, or any other significant health issues – they are focusing on their HEALTH. Therapy doesn’t have a prominent place on the table when the survival of the child is at stake.

Milestones

You cannot compare children who have experienced health issues with children who have not.

So, throw out the charts when you have a child with health issues. Just don’t even go there. It’s not worth it, unless you want to add what YOUR child has gone through to the lists of the typically developing or kids without health issues but who have disabilities (read: having a disability does not make you unhealthy).

Even when a child is healthy, it remains unclear to me what use milestones have, other than to freak parents out and create a system of panic and comparison. I mean, are we using them to “get” our kids to reach mainstream goals that our kids will actually only reach when they are truly ready to anyway?

What’s the point?

So, Does Your Child Need Therapy?

My advice to parents just starting out and who are trying to answer that question of “does my child need therapy???” is to get to know your child.

Spend time really watching your child, figuring out what their learning style is.

Think hard on some of the questions that I’ve asked here, think about your own personal prejudices and stereotypes regarding intellectual and development disabilities.

Then try and meet your child in that happy space where they can progress.

I think establishing a strong support team is important – people to give advice on the pieces you are not familiar with (in my case, the physical/speech aspects), but I’d caution against anyone that does not truly care for your child or anyone who comes from the Medical Model – I think in their lack of care, or in their philosophy regarding disability, they have the potential to cause more harm than good.

And even if something looks and sounds great, if it doesn’t feel great and if your child (or you) don’t enjoy it, it’s just not worth it.

ther·a·py

[theruh-pee] – noun, plural ther·a·pies.

1. the treatment of disease or disorders, as by some remedial, rehabilitating, or curative process: speech therapy.
2. a curative power or quality.
4. any act, hobby, task, program, etc., that relieves tension.

*****

That's what dictoionary.com has to say about it. In the context of our kids with special needs, I suppose that #1 and #2 fit the best, don't they? Treatment of disease or disorder; curative power or quality.

 

Within the context of Down syndrome – that is, the presence of an extra chromosome – therapy as defined in #2 seems ridiculous. We know that the there is no "cure" for an extra chromosome. We know that a person with Down syndrome is born a person with Down syndrome and will die a person with Down syndrome. There is no "cure".

 

The question becomes really, what are we trying to do? Make a person with Down syndrome more like people without Down syndrome?

 

That is it, isn't it?

 

So then you start to wonder, why. Why encourage someone with Down syndrome to be more like people without Down syndrome?

 

And the answer seems to lie in the the perceived happiness of one with Down syndrome – that, with therapy, s/he will be able to communicate more efficiently, happily. That s/he will be stronger, better able to physically do what s/he wants. That life for the person with Down syndrome will be better somehow.

 

"Full potential" gets brought up a lot in Down syndrome circles.

****

The question then shifts to, well, what exactly is therapy – in action? It seems for many to be the presence of therapists, trained professionals who manipulate a person's body, mind, senses, spirit or speech to gradually achieve desired outcomes.

 

Right? That's it, isn't it?

 

Having quit almost all therapy that is available to us, I find myself wondering about this a great deal. Meaning no disrespect in any way, shape, or form to those that are solid-gold advocates of the "therapy" that takes the form of a trained professional – and no disrespect to the trained professionals themselves – isn't therapy, in the case of children with Down syndrome – simply full and intense inclusion, with guidance, in every aspect of daily life?

 

Isn't it working on gross and fine motor skills, eye/hand coordination through the manipulation of eating utensils?

Being provided a model?

Especially with a learning style that is largely hands-on, exploratory-and emulation based?

Isn't it about developing strength?

About learning to interact?

Yes, this can be equally applied to "school" – I am simply having a hard time wrapping my mind around our current notion that true learning, development, growth or rehabilitation of any sort needs to happen within the square corners of a room; that people with letters after their name and framed slips of paper on walls need to be involved for it to have value, real and true.

 

Learning to care for a growing life – to me, this is education. It's also therapy – to dig, water, weed and nurture.

Cleaning, setting up and filling a tub with water, manipulating water through fine holes, object transferral in fluid – all of this in my mind is both therapeutic and constitutes "learning".

 

Developing teamwork skills. Watching, learning.

I watch these two, so busy with their play. I watch my Moxie, who is incredibly strong, capable, communicative – and she has Down syndrome!

 

I think about the fact that Down syndrome is the most common genetic "disability" on this planet. Something in the region of 1 in 700. It's always been around. We really ran into trouble when we started institutionalizing people with Down syndrome (remember this post?). But if we skip back more than a hundred years, how was it then? How was it when we were cave people even? Because Down syndrome just as surely existed in that time as it does now.

These two are growing together. They are very different individuals and as such it seems they are providing one another with learning. And therapy.

And sometimes I wonder – isn't this enough? Isn't this what it's supposed to be about?

 

And I wonder if every single thing that I am doing with Moxie – from her home birth, the relentless breastfeeding, the opportunities and full, guided inclusion offered to her – if all this is leading her to where she is headed, this smart, capable, energetic little girl? Or was it genetics all along? What is the piece that makes a difference, if there is one at all?

 

This isn't a post about answers. It's a post about questions.

I'd love to hear what you think.

 

ther·a·py

[theruh-pee] – noun, plural ther·a·pies.

1. the treatment of disease or disorders, as by some remedial, rehabilitating, or curative process: speech therapy.
2. a curative power or quality.
4. any act, hobby, task, program, etc., that relieves tension.

*****

That's what dictoionary.com has to say about it. In the context of our kids with special needs, I suppose that #1 and #2 fit the best, don't they? Treatment of disease or disorder; curative power or quality.

 

Within the context of Down syndrome – that is, the presence of an extra chromosome – therapy as defined in #2 seems ridiculous. We know that the there is no "cure" for an extra chromosome. We know that a person with Down syndrome is born a person with Down syndrome and will die a person with Down syndrome. There is no "cure".

 

The question becomes really, what are we trying to do? Make a person with Down syndrome more like people without Down syndrome?

 

That is it, isn't it?

 

So then you start to wonder, why. Why encourage someone with Down syndrome to be more like people without Down syndrome?

 

And the answer seems to lie in the the perceived happiness of one with Down syndrome – that, with therapy, s/he will be able to communicate more efficiently, happily. That s/he will be stronger, better able to physically do what s/he wants. That life for the person with Down syndrome will be better somehow.

 

"Full potential" gets brought up a lot in Down syndrome circles.

****

The question then shifts to, well, what exactly is therapy – in action? It seems for many to be the presence of therapists, trained professionals who manipulate a person's body, mind, senses, spirit or speech to gradually achieve desired outcomes.

 

Right? That's it, isn't it?

 

Having quit almost all therapy that is available to us, I find myself wondering about this a great deal. Meaning no disrespect in any way, shape, or form to those that are solid-gold advocates of the "therapy" that takes the form of a trained professional – and no disrespect to the trained professionals themselves – isn't therapy, in the case of children with Down syndrome – simply full and intense inclusion, with guidance, in every aspect of daily life?

 

Isn't it working on gross and fine motor skills, eye/hand coordination through the manipulation of eating utensils?

Being provided a model?

Especially with a learning style that is largely hands-on, exploratory-and emulation based?

Isn't it about developing strength?

About learning to interact?

Yes, this can be equally applied to "school" – I am simply having a hard time wrapping my mind around our current notion that true learning, development, growth or rehabilitation of any sort needs to happen within the square corners of a room; that people with letters after their name and framed slips of paper on walls need to be involved for it to have value, real and true.

 

Learning to care for a growing life – to me, this is education. It's also therapy – to dig, water, weed and nurture.

Cleaning, setting up and filling a tub with water, manipulating water through fine holes, object transferral in fluid – all of this in my mind is both therapeutic and constitutes "learning".

 

Developing teamwork skills. Watching, learning.

I watch these two, so busy with their play. I watch my Moxie, who is incredibly strong, capable, communicative – and she has Down syndrome!

 

I think about the fact that Down syndrome is the most common genetic "disability" on this planet. Something in the region of 1 in 700. It's always been around. We really ran into trouble when we started institutionalizing people with Down syndrome (remember this post?). But if we skip back more than a hundred years, how was it then? How was it when we were cave people even? Because Down syndrome just as surely existed in that time as it does now.

These two are growing together. They are very different individuals and as such it seems they are providing one another with learning. And therapy.

And sometimes I wonder – isn't this enough? Isn't this what it's supposed to be about?

 

And I wonder if every single thing that I am doing with Moxie – from her home birth, the relentless breastfeeding, the opportunities and full, guided inclusion offered to her – if all this is leading her to where she is headed, this smart, capable, energetic little girl? Or was it genetics all along? What is the piece that makes a difference, if there is one at all?

 

This isn't a post about answers. It's a post about questions.

I'd love to hear what you think.

 

When I read Jennifer’s article in the Bloom Magazine (see below), I cried because it hit me so hard.

It was right at the time in which I was questioning all of the therapy that we were engaged in, the overall feeling that I was getting that we in the Down syndrome community were focusing so hard on “early intervention” as the end and the all. It was wonderful to hear Jennifer’s strong voice recounting her experiences and ultimately, her decision, which (not to be a spoiler) ran counter to popular opinion.

I am delighted that she consented to share her article here on this blog, so happy to introduce you to this fabulous writer, mother, advocate,  (and web designer – she helped me through some critical issues in transferring my blog, for which I will always be grateful).

Here is Jennifer.

*****************************************************************

Fake Work, by Jennifer Johannesen

Fake work: ‘No matter how much I did, I felt the abyss of the bottomless pit’

My son, Owen, passed away in October 2010 at the age of 12. He was born with multiple severe disabilities, some of which were anticipated in utero, and all of which remained undiagnosed, even in his death.

Recently I’ve taken stock and written a book—No Ordinary Boy—about life with Owen. Writing offered no relief from my grief, but it did allow me to see the full arc of the narrative of his and my life for that 12-year period—a story, with a beginning, middle and end.

I can now recall events and moments and place them in time, in context, knowing where our lives were ultimately headed. What was once ‘just’ hard work, worry and gut-wrenching decision-making now has a poignancy—it exists as a precursor to whatever happened next.

This reflection has led me to new perspectives, reinterpreting history with a dispassionate eye and sometimes heavy heart. A prevalent theme has emerged—one I call ‘fake work.’

I borrow the term fake work from a business book of the same title, which outlines how work that gives off a vibe of productivity—but does little to achieve the company’s goals—has permeated corporate culture. Fake work has other names too, like busywork or make-work. I like ‘fake’ because it has more grit. And it suggests a kind of collusion between all parties involved.

Fake work, as I think it applies to raising a child with complex disabilities, could include:

  • appointment summaries and paperwork that primarily serve to fill your child’s file and which no one will ever read
  • elaborate applications for funding—forms that require parents to exaggerate or lie to game the system, at which caseworkers apologize for the complexity and requirement to grovel
  • extreme measurement of goals, inputs and outputs, outlined in metrics that only an institution cares about and which in fact gets in the way of real parent engagement with the child
  • intake after intake after intake, to accommodate the constant turn-over of staff
  • spending as much time ‘cramming’ for follow-up appointments as doing the prescribed therapies (“We were supposed to be doing these exercises every day and now we have an appointment! In order to catch up, so the therapist doesn’t think she’s wasting her time, we have to do it three times a day for the next week!”).

I’m sure you can think of more. Fake work could be any activity where parents (and the child) are required to spin their wheels or run in place or paddle like crazy in order to give the system what it needs to keep chugging.

“But isn’t some of it necessary?” you may ask? Yes, for sure. But only if the system is serving you well and is a place where you want, and choose, to be. Many times, I didn’t think that what was on offer was a choice. Instead, I just thought, “This is what one does when raising a child with complex disabilities.” It was as necessary and logical as putting one foot in front of another.

Granted, in order to see progress we have to measure it, document it, chart it, apply what we’ve learned. This makes logical sense (although I question just how much is actually needed). So rather than just complaining about the work itself, perhaps a more useful exercise is for us, parents and clinicians alike, to back up a step, and look at why we do what we do (not just at what we do).

What if we wondered why progress in our children is so important? Part of what creates fake work is our willingness not only to go along with rehab advice without challenging it, but our desire to see our children continually improve, to achieve milestones, to be closer to ‘normal.’ In many cases, our desperate desire.

It may be reasonable to assume that all parents want what’s best for their child. But ‘best’ is a slippery concept, like ‘quality of life.’ It’s hard to define, yet we assume that we all agree on what it means. Because often our goals for our children are so undefined, we might expand fake work to include:

  • working on something therapeutic that everyone, deep down, knows is futile
  • doing therapies prescribed by clinicians but not really understanding why. Or simply assuming the clinician knows best.

And for me, the ones that hit closest to home:

  • doing things that make my child appear as though he’s doing things similar to ‘normal’ kids, when we all know that he’s not
  • keeping myself busy so that I feel like a good and worthy parent.

Parents of children with disabilities put plenty of pressure on themselves to do everything possible to help their kids and rarely does anyone question their motivations. After all, there’s nothing worse than imagining a disabled child without access to therapy or ways to improve their lot. And there’s something noble and courageous about a parent who wants their child to be all they can be, rather than just be all they are. These are deeply ingrained values in our Canadian society.

And all of this works out just fine for institutions, who by their very nature demand inputs and outputs, measurable goals and documentation, status reports and metrics.

So many good intentions, and yet many parents, like me, find themselves swimming in paperwork, expectations, cheerful insistence and constant scheduling tensions—and feeling immensely exhausted and alone.

I have often wondered, “Why is it culturally acceptable that I be snowed under in this way? What other parents are expected to work this hard?” Granted, I was thrown a curveball—assigned the huge responsibility of caring for a child who was difficult to care for. Indeed, there was much to learn and much to do. But no matter how much I did, I felt the abyss of the bottomless pit. The applause and the praise and the compliments about how I had it all together—from professionals, family and friends—were almost depressing, because I felt like there was no way I could stop.

“You’re doing great!” they’d say, always with a kernel of hope that maybe the hard work will lead somewhere. The enthusiasm drew me in—who doesn’t want their child to walk, eat by mouth, select a shirt, or show they know something? The idea was always to try to maximize Owen’s potential. But I often thought it was all just to get closer to the Holy Grail: a ‘normal’ child. Or at least, a socially acceptable child.

And regardless of anyone’s hopes and expectations, realistic or not, the activity of therapy itself was never in question. Working hard was never in question. Working much, much harder than other parents of typical children wasn’t in question. And comparing the child with disabilities to the child without, as a means of goal-setting, wasn’t in question.

Do we dare dissect this a little? Is there any way to interpret this that doesn’t require us to assume our children are indeed ‘less than,’ and that it is up to the parents and the system to somehow bring them up to par? Or to die trying?

After many years of going along, I divested. Some might say I gave up. It was a life-threatening health crisis that landed Owen in dire straits in intensive care for many weeks that made me change how I was doing things. I whispered a promise to his unconscious self that if he made it out alive, I would make things better. And by better I meant meaningful – to him and to those around him. I promised that I would provide him with experiences and interactions and environments that would help him connect with others and the world around him—and we would scrap the rest.

When he came home from the hospital, I withdrew him from school, cancelled his therapies, and stopped the lessons. Life became fun, meaningful, interesting. Instead of focusing on what Owen could learn, we planned activities around what he could experience. Caregivers were instructed to enjoy themselves, do things they love and share their enthusiasm. I asked them to involve Owen as best they could without thinking about who’s watching, or letting ‘appropriateness’ ruin the fun. They learned to interpret his cues and let their plans unfold naturally.

Days were filled with nature walks, markets, coffee with friends, even tattoo parlours (where one caregiver sometimes worked). Owen swam with Mark, baked with Jamie, enjoying community outings with Marjorie, and became a regular at the local Starbucks with Sallyanne.

I asked myself almost every night, “If this were his last day, would it have been good enough?” The answer was almost always yes. And I had no idea that he would die unexpectedly, less than two years later.

Now, I live with few regrets. But sometimes I wonder how that would be different, if Owen had died in the midst of all that trying.

************

My review of Jennifer’s book, No Ordinary Boy – along with a giveway – will be shortly forthcoming. You would not be amiss in going straight over to Amazon to buy it right now though. Not to be a spoiler (again), but it’s that good.

For more on Jennifer Johannesen:

Blog, Yes No

Through her blog you can:

– connect with Jennifer on facebook, twitter and more

– subscribe to her newsletter (which I have) and

– order her book through her website

Website: No Ordinary Boy

 

I'm on the fence about therapy. I've heard all over the place that it makes a world of difference for our kids – then I see kids that have had years of therapy and are pretty significantly delayed. And kids that do not seem to have much in the way of delay who have also enjoyed years of therapy.

 

It seems like a which came first, the egg or the chicken? kind of question. Did the therapy really make the difference, or did the kid not really need it to begin with? In the case of the kid who received a lot of therapy and is quite delayed, was it because the therapist wasn't so good, or because not much would have made a difference anyway?

 

Sometimes it seems as a parent of a child with Down syndrome, I am left with far more questions than answers. The spectrum of delay is so broad. The range of health issues so vast. The difference in growth – from charts to teeth, from signing to talking – so great. I trip up on myself constantly, second-guessing what is happening. Oh, it looks like Moxie is teething! But no, she can't be – babies with Ds do not typically teethe until later, and they teethe differently – in a different order (not necessarily bottom two first).You ain't seeing nothing, girl! Fine. Then what are those two white nubby things under her bottom jaw?

 

I try to be on guard about that tripping up. I don't want my own expectations on what could or should be happening with her to create some version of a self-fulfilling prophecy.

 

I thank God all the time that my parents were so clueless about hearing. With my degree of loss, it's kind of unbelievable that I never went to a special school and more – that they sent me to Japan by myself when I was 15, did not speak Japanese, to attend a Japanese high school! And live with Japanese families that didn't speak English! In 1988 Tokyo, sans romanji!

 

That's not the only thing, of course. I've been working since, well, forever. My hearing never came into the equation, except for when I was fired because I couldn't hear. I never received accommodation in school. It was hella hard to focus and 'get it' but there was never really any choice but to get it. Failing was not an option.

 

While a lot really sucked at the time, I'm very grateful for the lack of boxing in my parents did with me around my hearing. I didn't have an IEP saying that I had to develop x, y and z by such and such a time; I didn't have someone telling me that I couldn't be a Japanese interpreter because by golly! You can barely hear English! I didn't have someone saying that work would be hard for me because I wouldn't be able to hear (um, I knew that already).

 

I was lucky. It was hard, but I was lucky. I don't want things to be so hard for Moxie, but I want her to be equally lucky in the way of opportunity – just like this guy is lucky in that he's breaking down some notions on what a Deaf guy from Finland can and cannot do:

 


Signmark – Smells Like Victory from Signmark on Vimeo.

Thumbs up. Smells like victory to me, too.

What are your thoughts on stereoptypes? Therapy for our kids?

p.s. I swear that looks like a tooth bud …

 

doesn't it?

 

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