Let's Talk: Therapy and Down syndrome

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.

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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.

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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.

 

Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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20 Comments

  • Love this, and I agree. I feel like we have swung way too far in the other direction – in our attempt to get away from institutions, we've simply set up different ones. Our kids aren't strapped to beds or medicated into oblivion, but they're still segregated through therapies and special ed classrooms, and we're still trying to "cure" Ds.

    I agree that pre-institution society was in some ways better for people with disabilities. (from a social standpoint – I am eternally grateful that we have medical interventions in the current century!) A man with cerebral palsy SIGNED the Declaration of Independence. Today, it's nearly impossible to get a wheelchair into the congressional building. In some ways we've come so far, but in others we've forgotten too much.

  • I've never been a therapy mom….like the moms who take every therapy available because that's what we're supposed to do…instead, I've picked and choosed what I feel Brooke has needed at the time…

    After heart surgery, I felt it important for PT because I wanted someone to show me how to strengthen her core and get her moving so she wouldn't be so frustrated…so once a week someone came over and worked with Brooke and me showing what we can do…and then when it was apparent Brooke was a rock star, we stopped.  When I noticed Brooke refused to chew food, I brought in a feeding therapist for 3 months (once a week) to help me teach her how to chew, and then we were done…

    My ped told me to do OT, but after 2 months of doing that it became apparent it was a waste of my time and we stopped.  Brooke does do speech, but honestly? It's because my 4 year old really needs the therapy and since we're already there I have Brooke go back too so as not to have her bored out of her skull in the waiting room..ha! But she likes it so whatever…but would I drive all the way there just for Brooke right now? No….

    I've always felt Brooke learns what she does and is so amazing because of her brothers and sisters and being around other kids…

    Sure, some of the therapy I've chosen may have given her a boost, but I've never done it to "fix" her,  just to maybe prod her along and help ease her frustrations….

  • Nava has had so little Therapy. But we've done lots of therapeutic things like always helping her do it herself, having a rocking playroom, taking her to the park, playgroup, and now a montessori pre-school. School is definitely OT all the way with a lot of opportunity for PT thrown in. I would have said not ST except last week I found out they will do sounds for 30 min each day with a newly hired caucasian teacher b/c none of the teachers are native speakers and the other parents worry about their kids language development.

    I think if she had an older sibling model starting pre-school wouldn't have been such a thing for us. I used to always think we'd end up back in the US for educational reasons but now, I doubt that more and more. In a way, village life in Laos would be an awesome world to live in for Nava. 

  • I absolutely love this post, Meriah.  This is exactly where I stand on Early Intervention; I believe so much in LIFE as therapy.  We did all the EI therapies with Finn for a while when he was a baby, and I was so conflicted about it the entire time, and I finally allowed myself to acknowledge that WE, his family, are his best "therapists," and that he will thrive by being included and valued and loved and given opportunities to explore and nurture his great sense of curiosity.

  • What a great post.  You are providing so much better therapy than I imagine she could get in a structured setting.  And it's so meaningful which is really hard to do in structured medical therapy.  It's funny timing, though, since I am just now setting up real live PT and speech therapy for Cora, after not having anything but minimal EI (that hasn't consisted of anything but OT and her teacher.  But I guess I need to find out if there will be something benefician that I can learn to work with her on.  I'm really going for tools and we'll see what we get out of it.  But I felt like I had to try it out for myself, so we'll see. 

  • we have therapy three times a week. The usual collection of PT, OT, and ST. All of which I feel Liddy needs and all of which are helpful to US as her parents…giving us skills with which to do what we do best…our own version of play therapy. We are NOT the type of parents who do thousands of hours of structured therapy with Liddy. We PLAY with her. We talk to her. We encourage her to do the things that we know she can do and show her how to do those that she doesn't. The therapy itself is a means to an end, yes. But the end itself isn't to speed up her development or to make her "normal" or to hit milestones faster. Not even two years in and I have already realized that no amount of therapy will make her hit those milestones any faster. She has to have her own motivation FOR doing things and sometimes (most of the time, who am I trying to kid? haha) nothing you or I or any therapist does will give her that push. It comes from inside her. However, the three hours a week we spend concentrating solely on those skills ensures us that when the motivation hits, she has the skills, the strength and the knowledge to accomplish whatever it is she is setting out to do.

    However, with that all being said, I'm not the type of person who believes that my way is always the right way. I'm learning as I go, just like all of us are. Our kids are such individuals that what works for us may not be what works for anyone else. Not all parents have the personality types to be all "Whatever happens, happens, whenever it happens." And that's perfectly okay too!

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    OOOOOH!!! Good one, M! Me and Melissa M. were talking about this just the other night. I have found for some, in their effort to be the perfect parent to their perfect child with Down syndrome they go WAY overboard, and I think they are missing the very point of Down syndrome: To slow down. To enjoy every stage as it lasts longer, to see that happiness isn't about what your child CAN DO it's about WHO THEY ARE.

    Some are in such a rush to prove that their child can do everything that a typical child can do that they are missing the point. Maybe they shouldn't. Maybe it's okay to be a year or two behind in walking and talking. We'll get there on our own time.

    I'm on both sides of this game. I really think for children with autism, therapy is necessary, especially early on.  Casey was in intensive therapy to get him to talk- it was almost a race against time because the longer you wait, the harder it is to get them to talk- if ever.  With Down syndrome, I think it's good to get help WHEN NEEDED. For too long I've been doing every damn thing they told me to do. Some of it is such crap. I have three other kids. I know what I'm doing. So now I've decided that we'll see a physical therapist monthly, just so she can direct how I work with Abby anyways. I want Abby's muscles to develop right so that she's not in pain later. I think we're going to drop speech out until after we can get her hearing back. And then we'll see after.

    I'm done with OT. Done.

    Fantastic post.

     

  • Our therapy days are well behind us, but I am thankful for what we did have. For us it wasn't about trying to make him less like he had DS, but as preventative care to ensure that he grew to his full potential — intellectually and physically. He has SO much to say, and he is very, very funny. Thank god people can understand him, or all that hilarity would be missed! Learning to walk the way he did prevented him from getting a wide gait that could have led to hip problems later in life. All that OT meant that he could finally sit in a barber chair and go to the movies (he had sensory issues that made those impossible).

    The therapies did not preclude the other fun stuff. Not at all. And the therapists worked with us so we could include the good stuff throughout his day, not just for the one hour he saw them.

    Every parent has to take their own path, this is just my opinion and experience. Looks like you're doing just fine.

     

  •  I love your post!!

    I am a mommy of two; one who has DS. We put him in therapies (PT, OT, developmental, and speech) right after birth because that was what was "recommended". Right before he turned 2 I made the decision to pull him out of all therapies. I began feeling like most of the therapist weren't really tailoring the therapy to my son but rather to his diagnosis. I would ask "Why are we doing this?" and the response was similar to "Because this is what I do with ALL my DS kids". I'm sorry but wasn't I told EVERY child is different and isn't my son MORE then just a diagnosis? Not to mention, my son had become so overwhelmed he refused to particapate in therapy whatsoever. It just became a waste of everyone's time.

    Fast foward a year and I enrolled my son in the public school special education pre-k program because that was "expected". After two years, 200 minutes a week of therapies, and 5 IEP meetings my son and I had become exhausted! I began to toss around the idea of homeschooling and FINALLY, in August, I declared, "My son will be homeschooled this year!" (There are MANY other reasons I chose homeschooling.)

    I believe therapy does work for some people (I personally wouldn't give up his private speech therapist!) but for us the 3-4 different "recommended" therapies was just TOO much. Doesn't he get enough "physical therapy" when we go on our daily walk? or when we dance? or when we visit the park? Just as you stated there is no "cure" for DS so can't my son just be a kid? My child without DS couldn't handle all the therapies and doctor's appointments my son was having to.

    I guess I always end up taking the road less traveled but I definitely always try the "expected" way first. 😉

     

  • I've been saying this for years!  My daughter w/Ds is almost 18.  We have not participated in institutionalized schooling but let her learn in the real world.  She has grown into a lovely young lady who is social, happy and will never see herselt as someone who needs to be "fixed" through therapy.  She is perfect as she is.

  • Holy cow I couldn't agree more.  I have doubted the value of early intervention since the day my girl started it… at 12 days old.  I haven't seen them do anything magical that we and daycare don't already do with her.  

    The only thing I'm interested in is speech therapy (something I haven't been able to get to date, even after switching programs).  The rest seems like crap to me.

  • Bravo! As the mother of an amazing young man who is turning 28 next month I applaud you! My son was born at home, never went to therapy and was home-schooled along with his 2 older sisters.  Today, he is bright, funny and very creative.  He doesn't "fit the mold" that a more traditional path might have created.

  • I appreciate this posting so much! My daughter doesn't have DS, but instead she has OI like her mommy. We've been going to PT (same place as Moxie) for almost 4 months. It certainly lends me ideas on what I could be thinking about at home, but when my daughters therapist asked me what other types of things she should be doing with my daughter I was confused. Isn't she the therapist? I find that a lot of time just becasue my daughter and I have the same disability people expect me to know everything. What I question more than our PT routine is the Early Intervention program. I still haven't been able to wrap my brain around what that program is supposed to be doing to support my daughter? I work in the world of disability rights and I typically scream disablity pride. Whenever I meet a non-disabled provider (for my daughter) I always start by telling that what I do for a living and what the different between the medical model and social model is. I make sure that they know where my family stands, or sits in my case, on cures and fitting in or passing. 

  • Bravo!  Thanks for posting.  Like so many others have posted we have done therapies. But as our DD has graduated from one stage to the next and as things are perpetually changing with agencies/therapists we do less and less and soon to be none.  I have had more than one therapist say to me you do most of this all ready or I'm not telling you anything new which has lead me to the conclusion most mom's who have been given the desire to home educate their children instinctively know what to do most of the time.  We desire our children to be the best they can be so we do what makes sense to get them there.

    If only I could figure out the magical solution of developing speech I would be satisfied. Soon to turn 4 and primarily non-verbal (we have babble but not true words); to which I remind myself a year ago we didn't have as much babble as when she was receiving assistance from the professionals.  So there is progress!

    Personally happy to find a group of moms who think along the same lines!!!  Have a grand day ladies!!!

  • Comment: Wonderful post and thoughtful comments. I have the honor of seeing a lot of early intervention programs and find they are most effective when the family has lots of questions and doesn't know how to find the answers. The program becomes their resource. For active families with research-savvy members, much of what is being done in therapy can — and in my opinion SHOULD — be happening in the context of life. I loved the photos of food, mud,etc. That is learning happening as your children live life. 

    Sometimes a therapist can help with some specific things, like fitting prostehses or recommending for adaptive equipment, that our current systems require as part of the "treatment" choice. Sometimes there are many other children, or there are other family dynamics that make it necessary for someone to come in and assist the family in focusing on where their child is and what needs to be learned next. Much of the time, though, the approach you are taking has much better results than any other formal program because you are living with your children and assisting them day after day in whatever they reach out to do next.

     

  • WOW!  It's wonderful to see so many people engaging in a respectful discussion!

    I've been a pediatric physical therapist for 33 years and own a private practice offering OT, PT, and ST.  One factor that has effected the quality of an IEP is the number of ridiculous lawsuits that have been filed against school districts for not doing enough for kids.  One in my state requied a school district to send the child half way across the country to get a good education, at the school's expense! Unfortunately, not everyone is as reasonable as you folks are!!

    As for therapists themselves, a good, ethical, pediatric therapist should at the very beginning, determine what the goal of the parent/child is ("What is it that your child is not able to do (safely) now that you need him/her to do?").  Then we should together determine what the plan of care is.  Sometimes it's just for us to provide a piece of equipment or a new way to do something that might not look "pretty," but works just fine!  Sometimes there are lots of concrete things that we all need to work on. This plan should always include a home program so the family can put a reasonable amount of "therapy" into their daily routine 24/7.  That's where the real "therapy" happens, not in an outpatient clinic or a school. The plan of care should always include meaningful contact with others in the child's community (ie. school, coaches, Sunday school) to share ideas and be sure we're all doing the things that are in the child's best interest consistently.

     At the initial eval we tell our families that it is our goal to work our way out of a job with them and that "graduation" is a good thing!  If families are not feeling the value of therapy, then either the therapist is not doing a good job of explaining what's going on, the goals you developed together are unrealistic or need revising or it's time for discharge!  Therapy should be discontinued when the child meets his/her goals, or if therapy is not making a functional difference in the child's life, or if the therapist is not the most cost-effective person who can help you/your child do what needs to be done. We should come into and out of your life only as needed.  Anything else is over-use of health care dollars that might be needed in the future for something important, like the cardiac issues one of you mentioned. In all cases our therapists are encouraged to "go beyond therapy to help families find joy in their journey of raising children with disabilities."  

    You are absolutely correct when you talk about not trying to "fix" kids!  Each one has great value just as he or she is. Your kids have things to teach us that no amount of initials behind our names can give us. I know the full plates each of you have and I applaud you for all you do on behalf of your kids!

     

  • First up those pictures are awesome! My kids would love to play with yours in that big bucket of muddy water!I actually was having the same thoughts the other day When reading differentt blogs and their portrayal as such of disbaililties and underlying seemlingly accepting difference but then actually trying to portray normality as such to a point where it seemed they had not embraced differeence. It also goes along with my thoughts on the diffeerences between the child with the disability and the parents journey two totally different journeys. I guess i got to a point thinking why i am spending so much energy worrying when my child is more than happy with who he is! Sorry for the ramble but thanks for openly discussing this!

  • Comment  Ok, here is my take on therapy as a special education provider and specifically, at this time, as a "preschool" special education provider.  I/we know that children need to be educated in a the "least restrictive environment".  For a preschooler, especially, that means the home.  What you are doing with Moxie is brilliant, therapy is so much more effective if skills are learned and then used in daily life.  I can't think of a single thing that I would do with her than you are currently doing.  However, some parents work full time and some don't have the confidence to teach their children they way you teach yours.  We are their for those parents (I hope).  If you see your child growing and thriving and you are taking an active interest in his/her further growth, you are doing exactly what your child needs.

    Lisa

    • Marcia, I agree very much with your comment, Lisa, yours as well.

      I am a pediatric OT, and I know from reading all these comments, and from my experience, that OT isn't always the best understood or well represented/known of the "therapies". But as an OT, I do believe in the value of the profession, and the support that OTs, as a body, bring to persons with disability, across the lifespan and across needs. An overlying goal of OT is engagement in meaningful activity, as achieved through activity analysis and adaptations. A lot of it may seem to be common sense, or not anything special, but we are trained to look at situations though our "OT" eyes, as well as in methods of motor learning and sensory integration. We seek to support individuals in reaching or returning to independence. I hope that the profession can be a respected one for consumers,  even if you have had a "crap" experience with OT in the past, or feel it's not appropriate for where your child is right now, I think it's important that parents and consumers understand that the majority of therapists only want the best for their students, I know that I certainly am always thinking/working/dreaming about work and how I can help my students, and grow in my profession. 

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