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.
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).
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.
I’ve never been much of a Systemic Follower, most often preferring the tune of my own drum. But whatever inclination I had in me to listen to what The System Said about my daughter pretty much dissolved after The Placenta Incident and my breastfeeding issues. I learned right then that listening to my own gut was more important than checking off a list of what some other people with titles behind their name were saying I “should” or “shouldn’t” do.
“They” said, THERAPY! “They” called for it, talked about it, paraded it all around like a fluffy white dog in a show. Skeptical about what “early intervention” could do for a 4-month old – I mean, come on! A baby!Lying there and gooing about!, but still susceptible to that thing called “special needs parenting guilt”(which is, wondering if at a later point, I’d wonder if I could have/should have done more? Made a real difference with my child? Was it me that stunted her growth?) I signed us up for a few samplings the Regional Center offered. We had a home-lady (“development specialist”) come around and ask me a lot of questions then tell me that everything I was doing was fabulous. I like being told I’m fabulous and she was very nice, but it didn’t seem (in any way, shape or form) more productive than what I was doing on my own, so after a while, we quit.
What was I doing at home, you wonder? Oh, I just set up the playmat and different play areas for Moxie with various shapes, sounds, textures and introduced her to everything. Tried to get her to roll over, look up, listen and so forth, Nothing very out of the ordinary. Regular “play with your baby” kinds of things.
the “fabulous”, “highly engaging activities”….
We started Physical Therapy first at Kaiser with the most marvelous Physical Therapist, a lovely woman by the name of Sharon White. If you are in the Bay Area, look her up. I love Sharon and think of her as the Michael Jordan of Physical Therapy – there is something just *different* about the way she moves her hands, manipulates limbs and does her job that is the hallmark of someone who really knows her stuff. Who is truly talented. I loved PT with her right off the bat – she was clearly doing things with Moxie that I knew nothing of, and I learned a lot from watching her and from following her advice.
Moxie working with Sharon
Kaiser eventually denied us services (this is common, by the way, Kaiser will deny services and then you petition for more and basically just go with the Regional Center services from there on out) and the Regional Center picked us up and we had a PT come to our home every week. We liked her very much – she was not Sharon, no, but she was also very talented, caring and supportive. When I told her that I felt isolated (this time last year?) she referred me to the Oakland Children’s Hospital Parent Infant Program (“PIP”), and after a few months, we started there, going just once a week even though it’s a twice/week program.
In the meantime, Kaiser suddenly contacted me and said that they would accept Moxie after all. This was a big shock for everyone – Kaiser evidently never does that. Kaiser was going to take us back and then wanted to refer us out to Easter Seals (that is, they were going to pay Easter Seals to provide PT services in their stead). I adamantly refused – if we were going back to Kaiser, I wanted to go back to Sharon! No way did I want to start up with the Easter Seals – or anyone else – if I could have Sharon again!
So we went back to Sharon. And Moxie had her 1st birthday.
I’m terribly bad at tracking what my child can or cannot “do” by way of milestones and age, but by her first birthday, Moxie was on the verge of crawling. She would get on all fours, rocking back and forth, basically trying to push herself forward by rocking (it was hilarious!). She had a lot of teeth, not all. She was feeding herself. She wasn’t saying much beyond a couple of words. She liked to eat paper, transfer objects, play and of course, she adored music (I had her career as a dancer with AXIS all set).
After Moxie turned one, we started with PIP in addition to seeing Sharon (our outstanding PT) once a week.
I had mixed feelings about PIP from the get-go. On one hand, the staff is committed, enthusiastic and oh, they’ve been doing this longer than I’ve been alive. I liked many of the other families – the kids in the program represented the full disability spectrum, with only Moxie and another child having Down syndrome. I liked the diversity of disability present. I liked most of the other parents and appreciated learning what it is like for many parents at the beginning of their “disability career”. Parents of kids on the Autism Spectrum, kids with William’s, kids with Cerebral Palsy, with unknown and undiagnosed disabilities. It’s rougher in many ways for them than it is for me: they haven’t been a part of an active and thriving disability culture and community; they don’t know with the certainty that I do that their kids will be just fine.
There was a high turnover rate in this program and with each turnover, I wondered how good it really was for Moxie, whom I was learning is a strong imitator, to be around kids that were by-and-large just as nonverbal as she? That weren’t really signing either? Around kids that often weren’t more developed than she was either in the gross motor area. I wondered how good it was for me to go as I often came home profoundly depressed by the sadness of the other parents.
The program, you see, is divided into 4 parts: 1) small circle time 2) structured activity 3) snack time 4) parent therapy time (with the kids engaging in supervised free play in another room). During the parent therapy time, I’d hear of all the problems others faced, listen to their grief, their anxiety and more.
Still on the fence, we went to Mexico to camp for a month. While in Mexico, Moxie played hard, moved hard in the water, on the beach, in the sand and just glowed in the light from the attention she was receiving from all of us.
Her leg and ankle muscles, given to pronation, strengthened considerably.
Which was understandable, given how much she was exercising them daily.
Mexico was where Moxie really started to cruise.
When we returned,Sharon said that Mexico did more for Moxie’s development than therapy could have. I was watching how Moxie re-entered PIP, with all of its bountiful structure (structured play! structured song! structured games!) and well.. wasn’t too impressed. It’s just not playing on the beach in Mexico, let’s say. On the flip side, I had come to thoroughly enjoy the parent’s therapy piece! In fact, it had become the main reason why I wanted to continue to attend. Therapy for me, woo-hoo!
But while I delighted in the parent therapy, the point of going there twice a week for 3+ hours a time was Moxie, and while she liked the people and loved the attention she was receiving from the staff, she wasn’t learning new things like she did while simply engaging in unstructured play, especially with Micah. It made more sense to me to devote the time we were spending in the program simply to Moxie – to paint and play with her. Work one-on-one on signing. Let her create and be expressive and do and be.
This all on the heels of my being wretchedly, pregnantly sick, and also trying to raise the money and learn to run for Team in Training. It just wasn’t good timing. I couldn’t do everything and quitting the PIP Program seemed the smartest thing to do.
Moxie just turned two years old. She goes to PT twice a month, still with the marvelous Sharon. She will be starting Speech Therapy very soon and that will be once a week. Other than that, nothing.
And it feels right. It’s the right thing for us.
In terms of what she’s “doing” – (sigh – I’m always bad at recalling and noting these pieces) she’s walking, yes.
She signs probably around 30 signs. Says 5 words or so. Eats with spoon and fork and throws a fit like you wouldn’t believe if you try and help her. SHE CAN FEED HERSELF, thank you very much.
She likes to try most anything she sees us eating. We are pretty healthy eaters (I like writing that right after I show you a photo with her eating cake) and so she has a strong propensity for foods that are good for her.
tomato and edamame: favorite snacks
She loves climbing and can go to the top of any bookcase. I don’t have many photos of this as I always freak out and run to get her rather than reach for the camera. You’ll have to take my word on it: this girl is a climber.
I feel that therapy with children with Down syndrome is the same as tuning a digital hearing aid: one size does NOT fit all. Some personality types might benefit from more therapy than others. Not all children need it and not all need a whole lot.
Moxie imitates, she learns from watching. When she saw her friend Zia – a year younger but about the same size as her – walking, I saw her lips tighten and her eyes narrow in a set look of determination. I could almost see her thinking, by God, if he can do that, I can too. Sure enough, she was walking without support shortly after.
Moxie will see someone her age signing; she signs. She sees someone eating with a fork; she tries it. It makes no sense to me, given her personality type, to engage her (solely) in activities with kids that are on the same skill-level as she is. Also, her try-and-see approach coupled with her eagerness to explore and active energy do not mesh well with a repetitive, very structured environment or activities. She gets bored and starts tuning off – I know this, because I saw it happen with PIP.
It is my belief that kids with Down syndrome are the same as any other child – you simply have to get to know your child to understand what will most benefit him/her. Not everyone learns the same way and everyone has different strengths.
The other thing that I feel – more from my gut than from a Vulcan-like logical mind-space – is that milestones and things like that are not terribly useful. I mean, what purpose do they serve? To “get” our kids to reach mainstream goals that our kids will actually only reach when they are truly ready to anyway? Most 16 month old kids can walk; my daughter couldn’t at that age. Did I really need to know that against a standard litmus, she failed? No. What was actually useful was just being aware that her ankles were pronated and then taking her to the beach and playing with her.
My advice to parents just starting out is to get to know your child. Spend time really watching your child, figuring out what their learning style is. 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 – I think in their lack of care, 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.
What are your thoughts on therapy? What do you do for your child?