Therapy, Ableism, and Why We Do What We Do

Rowenna has started a period of transition and I’ve been thinking quite a bit about the choices we’ve made for her so far and the choices we will need to make in the next few months. As part of my thought process, I’ve been having discussions with other moms in the Down syndrome community. We decided to explore some of the Big Questions through our blogs and a blog hop. Please visit Lisa’s blog and check out what other parents are saying about ableism, achievement, and therapy.

So, what’s our take on therapy? Why do we do it?

Before I start, I want to be clear that I absolutely support therapies. My daughter had a feeding tube for 6 months and I am convinced that without the support of our speech therapist, Rowenna would have used the tube even longer and may not be the successful eater she is today. I think therapy has a use and a place and we still participate in Birth to Three therapies, but we do it for a much different reason today than we did two years ago. I cannot say what each family needs or what each child needs and for that reason I will always defend the right to access therapy.

I also want to say that I love our therapy team. They have been very accepting of this momma radically changing her mind about therapy and open to adjusting therapies as Rowenna needs it.

That being said, I do have mixed feelings about therapy and the way it’s pushed as some sort of panacea in the Down syndrome community.

In the Down syndrome community, I see a great deal of ableism – and I’m not sure most people even realize it. Even our battle cry “more alike than different” is a form of ableism. When we are “alike,” aren’t we really saying “normal,” “on time,” or “typical”? We strive, from birth, to prove how normal our kids and our lives are. We praise each other when our kids meet milestones on time, and we distance ourselves from members of our own community whose children aren’t as “normal” as we claim kids with Ds to be. We never hear from our fellow Ds moms who have 8 year olds yet to be potty trained, moms of school age children who do not use spoken communication, moms of kids for whom school is a true struggle and full inclusion is simply not happening. There does not seem to be a lot of room for their stories in the picture we paint of “more alike than different.” I’ve even been told by a few moms of older kids that they are afraid to share their stories, unsure how they will be received by the rest of us.

That is heart breaking.

We push therapy and push it hard. I can’t tell you the number of times I’ve heard the following advice: “Get all the therapy you can get – then push for more! If it hadn’t been for therapy, my kid never would have walked ‘on time’!”

Why this focus on doing things “on time”? And at what cost are we striving for our kids to be “on time”? Is it worth the time given up as a family, the people coming into our homes, the constant focus on milestones and ability? What’s the difference between walking at 20 months or 26 months? There are no studies that I know of that show any connection between meeting milestones on time and future ability.

When our kids are past “time” to achieve something, does that mean therapy failed? Or us parents? Or is it a simple matter that kids with Down syndrome often experience delays, and this is just a natural manifestation of that?

Is it possible that instead of “more alike than different,” a more accurate rallying cry would be “different is ok”? We can support our children and have high expectations while still celebrating who they are and what they can do. Delays are going to happen, and that’s ok. Different is ok.

I started to question the purpose of therapy when Rowenna was 18 months old. Until that point, Rowenna had hours of therapy each week, starting at 6 weeks old. She was in full heart failure and no one ever questioned whether or not she should be taxed through physical therapy. Not once. It was just what you do. Down syndrome? Insert one quarter into the Birth to Three machine. Receive services until age three. Simple. Easy. No muss, no fuss.

No one ever explained what the heck we were doing in physical therapy, and I didn’t think to ask. All I heard from the Down syndrome community was that it was important and the key to her success. She had to reach her full potential. Well, I wasn’t going to stand in the way of that.

But what was so damn important that I was putting a child in heart failure through physical therapy? I guess we had to help her meet those milestones on time, we had to help her be as normal as possible.

After her surgery she was pink and perky, ready to move. So we continued therapies and developmental assessments and I still never asked what we were doing or why. Again, it’s just “what you do” and was always presented as such. I feel lucky that we have a team of therapists who guided us along the way by asking gentle questions like “how can we help Rowenna participate in family activities?” It’s never been about milestones or exercises for her therapists, and I think that’s why it took me so long to even stop and consider what we were doing, and the reason we continue therapy today. So even before I started questioning what we were doing, our team was already modeling the approach we would later strive for.

It wasn’t until we had an absolutely horrible experience with a developmental assessment that we really started to examine what we were doing with Rowenna and why. What was all of this therapy for? Do these experts know more about our child than we do? Is Rowenna benefiting from therapies?

So we sat down and thought about it. We saw that Rowenna wasn’t necessarily learning new skills through therapy, but she was clearly benefiting from having other adults in her life invest time and energy and ask her to rise up to a challenge. We also realized that we were no longer consumed by the idea of being “on time.” Rowenna had proven enough times that she is just going to do things when she’s ready, and not a second earlier, and therapy wouldn’t change that. We wanted to help Rowenna integrate into home life – work with us as we did normal things like sweep the floor, dig in the garden. Our therapists had been asking us about this all along, but now we were being very intentional about it and our therapy plan reflected it. Gone were milestones, in were a tiny broom, a stool to help her reach, a small shovel for the dirt.

We also saw that she would give her all to include herself in activities when she was surrounded by peers. She would challenge herself and try new skills if she saw others doing the same. We cut back on therapy and instead started putting her in activities for typical kids and she blossomed.

As I said, I think therapy can be a great thing for kids, even a life-changing thing. What I object to is the attitude that all kids with disabilities need therapy, and they all need it from the start, and they all need as much as they can get. We started physical therapy at 6 weeks. Not because she was already delayed at 6 weeks, but because she has Down syndrome and it’s what you do. No one (including myself) was looking at Rowenna as an individual with distinct abilities and needs, we were all seeing a diagnosis and “treating” accordingly – and no one was talking about ways to help Rowenna that involved being out in the community.

All over Down syndrome support boards I see moms posting that their lives are consumed by therapy or the schedule is straining their relationships…and what is the reply I often read and hear? Advice to keep at it, piling on that special needs mom guilt that tells us we don’t ever want to look back and wonder “could I have done more?” Even we mommas rarely advise each other to step out of therapy world, so how can we expect our therapists to do the same – recommend cutting back on therapy, or eliminating certain therapies altogether when they cease to be useful?

At what cost do we advise each other to take all we can get? How could therapy ever be more important than a happy, healthy family unit? Are there no alternatives to traditional therapy? Are there no alternatives to so much therapy? And again: is being “normal” and “on time” worth it?

And while I agree that therapies have been helpful for children with disabilities, I think that greater acceptance in their families, peer groups, and communities has done a world of good, too. People with disabilities are more and more welcome in “typical” activities – they are increasingly integral members of their communities, no longer automatically relegated to sheltered workshops and group homes. I don’t know if there’s a study out there that proves it, but my gut tells me that knowing you are welcome and loved has tremendous impact on your abilities and your willingness to try new things.

To me, that is also therapy. Being in the world, interacting with your neighbors, going to school, going to work, being welcome and appreciated.

But no one tells you that. They tell you that you need traditional therapies, in your home, and these will help your child achieve milestones. You ask about a swim class, they recommend aqua therapy. You ask about a playgroup, they recommend a developmental playgroup run by Birth to Three. Where an activity with kids of all abilities would be good, helpful, and fun, you are told a therapy would be better.

I would love to see a culture in which a child is born with a disability and we say to that mom: “You know what to do. Raise this child like any other, make friends within your diagnosis community and without, and when you need a little extra help, we’re here with therapies to support you. Your kid may be on a different timetable than others you know, but different is ok.”

In a few months, Rowenna will turn three and we will have a big decision to make: do we continue therapy? That’s a conversation we will have with her potential future therapists. Are they on board with our beliefs about disability? About therapy? Will they support an IEP that has intangibles like social skills rather than concrete, measurable-but-arbitrary tasks? Will they help us to continue supporting Rowenna’s integration into the world?

Only time will tell. Until then, we won’t worry about “on time.” We won’t worry about how alike she is. We will simply celebrate the bright spark we have in Rowenna and let her lead the way.Apron

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12 responses to this post.

  1. I think you hit on a very important question about the actual value of therapy. So many of us go into it pretty mindlessly, I think because when we receive our child’s diagnosis, we feel so unmoored, so unqualified, that we naturally allow the “experts” to dictate what we need to do. I can’t address other disabilities, but with regard to Down syndrome, I really think there needs to be way more dialogue about this. Not every kid with Ds needs therapy, not every kid benefits from therapy – and frankly, often the perceived “benefits” – i.e., developmental progress – is a myth in that most of this progress would take place anyway, even in the absence of therapy. I wish parents were encouraged to trust themselves rather than relying so heavily on “experts,” and I wish Early Intervention was presented as an option, with the pros and cons and what can realistically be expected, openly presented, rather than EI being pushed as the key to every child’s success.

    Reply

    • One of the things that made me start questioning all of this was when occupational therapy was recommended for Rowenna after an assessment during which she showed no delay in OT-related categories. If she didn’t have Down syndrome, would anyone have said a word about OT? No, probably not.

      Fine motor has always been a strength of hers. OT once a month? Can anyone seriously argue that is the reason she continues to make gains in that area? I think it has more to do with her natural talents. Some kids are gross motor powerhouses. Some are chatterboxes. My kid loves fine motor activities.

      Reply

  2. Posted by linda on February 5, 2013 at 1:36 pm

    By therapy, are you discussing things like physiotherapy, occupational therapy and speech therapy or other things? As someone who reads this blog but is not part of the Ds community, I’m very interested in this discussion yet I’m not 100% sure what the therapy in question is.

    Reply

    • In the USA, children with disabilities or delays in certain areas are provided therapy through “Early Intervention” or “Birth to Three.” (name varies by state)

      Nearly all areas offer physical, occupational, and speech therapies. Some areas also offer other things like developmental therapy, music therapy, or aqua therapy.

      These therapies typically take place in the child’s home (or at daycare) and are provided either free of charge or for a small fee, the rest funded by a combination of state and federal funding. On the third birthday, these therapies stop being provided in the home and the local school district takes over.

      Reply

  3. Ah, so much to comment on, but so little time. Rather than just agreeing with a lot of what you’ve said (I, as well as the kid, like our 1 hr of OT per week and will continue for as long as the entire cost is not coming from our pocket and have never felt like therapies were too much), I thought I’ll throw in another angle. Recently I’ve been reading a lot of mainstream stuff focusing on Down syndrome and intellectual disability as well as a lot of advocacy directed towards the ‘common folk’, those who are in the dark about what it really means to have Down syndrome and/or an intellectual disability. Something that keeps coming up, time and time again, is that somehow EI – therapies – are credited, mostly without question, for a kind of ‘new generation of people with Ds’ to a point where oftentimes the starting point is that people with Ds can do so much more now than they could before because of EI. Granted, there is some credit given to integration to a normal family life as well, but it’s never just that, and no one ever questions whether people with Ds can really do a lot more now, or whether we have just gotten a whole lot more aware with our expectations and opportunities. To me it almost seems that for many people who do not themselves have a family member with Ds, it is easier to ‘accept’ that there is a new generation, more capable, than that we (the common folk) were just jerks before. Helps many to feel better about their inclusion, I guess.
    Nope, not entirely sure with where I’m going with this either.

    Reply

    • I agree. I’ve actually heard this from elected officials: “Oh, didn’t we already do something about that?” And usually they mean things like Birth to Three. It’s easier to just point to therapy than to continue to dig deeper.

      Reply

  4. We discovered the same thing–that the timing of reaching milestones or adding skills was less important than our child being welcomed and able to participate in family, neighborhood, school and community life. The trouble spot, for many parents, is here in this: “To me, that is also therapy. Being in the world, interacting with your neighbors, going to school, going to work, being welcome and appreciated.” Parents fear that their children won’t be welcomed, and appreciated if they aren’t “on time” and “typical”…hence, the therapy trap if we fall into it. What you have said in this post (and also what Lisa suggests above) is important–parents need to understand that therapies are available, but that each family should set its own priorities and determine the role of therapy in daily life. They also need to know that there is more than one way of going about it. Professional therapy is a choice, not a requirement. And as you made clear above, some of the very best “therapy” happens within the course of a regular day, in everyday life with family and friends.

    Reply

  5. This is my favorite quote: “You know what to do. Raise this child like any other, make friends within your diagnosis community and without, and when you need a little extra help, we’re here with therapies to support you. Your kid may be on a different timetable than others you know, but different is ok.”

    Exactly! This is the model that I have adopted over the last 18 months and I LOVE it. Therapy does not consume our lives. In fact, it is rarely a thought at all. We just do family stuff and kid stuff and when I have a question I ask the DS team. I could not be happier with this approach to ‘therapy’. I seriously think we need to get the word out there.

    Reply

  6. So glad to read this post. I have the exact same questions about therapy for my 17-month-old daughter, Pearl, who has Down syndrome. I’m not sure why we’re trying to fit her into this box of normalcy and milestones-hit-on-time. I think she’s very smart and capable on her own, and as you pointed out about your daughter, mine does things — learns new skills, gets herself up to the next level of mobility — when she’s good and ready. I have asked her ECI therapists several times about why Early Intervention is important; they all cite cognitive reasons — that a greater ability to access her environment, whether through improved fine or gross motor skills, will help develop Pearl’s intellectual development, as it will stimulate her curiosity, her reasoning skills (cause and effect, etc. etc.), and so on. I do understand that. But that answer still doesn’t quite allay my questions, since I guess I’m still not sure what the goal is, or whether I agree with it. My little chanting-song that I sing for Pearl is, “Not everybody has to be the f*in same.” In my opinion, she doesn’t need to be anyone other than who she is. I think she’s real cool as she is.

    I’m also so sorry to read about your baby losses. My husband and I lost our first child, our son August, at birth three years ago, quite unexpectedly. It’s such a terrible loss and, unfortunately, it just doesn’t really heal, at least for me, so far. He will always be gone, and that is so hard to live with. I’m sorry your two babies left, too, and I’m sending you love.

    Reply

    • Posted by Linda on February 9, 2013 at 12:11 pm

      “My little chanting-song that I sing for Pearl is, “Not everybody has to be the f*in same.””
      I love this. Every child needs a parent to chant this for them, because normal is just a setting on the tumble dryer.

      Reply

  7. Posted by Linda on February 10, 2013 at 1:05 pm

    A group in a UK dance competition on TV are being judged for their ability, dancing beautifully … and overturning people’s preconceptions of Ds: http://sky1.sky.com/got-to-dance-home/gtd-profiles-dance-for-joy

    Reply

  8. Great post!!! I’ve been thinking about this a lot because of my little guy, Noah – 6 years with Down syndrome, and I’ve seen some different rants going on about how people with Down syndrome and other “disabilities” should be treated. My son is “different,” there’s no doubt about it, and there is no way I ever, ever would want to cover that up. I do subscribe to the I don’t want to look back and think I could have done more, but that “more” includes a lot more than therapies. We do PROMPT speech therapy an hour a week and hippotherapy an hour a week, plus a special needs gym class 30 minutes a week. We homeschool and try to capture teachable moments, but the majority of Noah’s life is spent exploring and playing with his siblings, being a fully present member of our family. Noah enjoys the heck out of hippotherapy and gym. Speech not so much, but I think speech is his biggest weakness and it’s what I care about the most as far as long term goals, so I put him through the paces. I don’t want him treated like everybody else – I want people to recognize he needs special supports; he won’t be able to fully function in society without that. If we truly convince people our loved ones with DS are just like everybody else, they will lose the accomodation and opportunities that they need in order to be integrated. Can you imagine our kids with DS going to school and being treated “just like everybody else”? Forget aids, adaptations, AACs, life skills, special ed, anti-bullying protection, special slots on the athletic teams, job coaching; it would be all sink or swim.

    It takes courage to honestly examine the prevailing attitudes and slogans – thanks for being so brave. It’s good to know I’m not alone.

    Blessings,
    Alyson

    Reply

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