Thursday, August 27, 2009

Disability is Natural: Discussion No. 4

Chapter 9 - Therapy: Beneficial Remedy or Toxic Antidote?

Although the issue of inclusion has been heavy on my mind lately, a bigger issue for me is therapy, because unlike school and inclusion, therapy is actually a big part of our reality now.

In a nutshell, I want to quit therapy. I have been ambivalent about therapy forever, and lately have become downright opposed to it, at least in our case. I'm not trying to make a case for everyone, and I'm sure that a lot of parents who read this might be horrified that I want to take Finn out of the very services that so many parents see as a lifeline. Just for the record, it's not the book that's making me question the value of therapy; I've been questioning it for a long time. Reading this book is only validating a lot of the thoughts and feelings I've already had.

There are so many parts of this chapter I could quote here, but instead I'll just say that basically it outlines, very articulately, these points:
  • Children with disabilities deserve to have and enjoy typical childhoods just like every other child, and filling their schedule up with various therapies can be detrimental to their self-esteem (sending the message that "There is something wrong with you and you need to be fixed"); it intrudes on the entire family's schedule and therefore everyone deals with the stress of it; and it emphasizes the child's differences and deficits even to his or her siblings.
  • Nobody - nobody - can say for sure that therapy actually does any good. Therapy is an inexact science at best, and there is no way to truly measure outcomes. Just because a child progresses does not mean it's thanks to therapy.
That last one, that's where I'm at. I have felt in my heart and my gut for a long time that all the things Finn has learned to do, he has done because he is him, and not because of therapy. I don't believe for a second that he is able to sit up and transition and crawl and pull up and eat crackers because his therapists taught him how to do these things. I know that he is doing these things because he's just ready to do them.

So I am having a really tough time justifying therapy at this point.

And again, I'm not trying to sell everyone on this thinking. I'm sure there are kids who are helped to varying degrees by therapy. I'm just saying that in our house, the results have been so negligible in my mind that it hardly seems worth it.

However, the matter is not settled, not by a long shot. See, Michael is not convinced. And so I have a case to make with him. Which isn't easy because I get all emotional and he argues for a living and so can pretty much talk circles around me which drives me freaking insane, and . . . well, I'll spare everyone the rest. But he's agreed to at least read this chapter, which makes me glad because Kathie Snow articulates it all far better than I can.

Stay tuned.


Megan said...

While I get the idea of not over therapizing a kid..and there's a time when therapy should be stopped..I do think that there are benefits. Try google searching early intervention therapy and down syndrome. There's data to back up that 0-3 does make a difference in the development of kids with Ds.

Mel said...

I think there is therapy, and then there is therapy. I have to be honest, and say that when you posted the video of Finn being made to walk with weights on his ankles by the therapist, I was shocked. We have therapy every week and it does not look like that. If Finn came to our centre, the therapist would be working with him and you together to give you simple ideas to incorporate into his play, to help him learn the things he wants to do a littl faster, and making sure he is doing them in the correct way. So by the looks of Finn, it would be teaching him to pull himself to stand first, then to cruise along the couch. Just like your other kids would have done, and like he will do anyway, but a bit sooner. And for Luke, it has helped. I know for sure because I did not get this type of therapy for him for his first year, and have been going weekly for 7 months. It has made a huge difference and lessened his frustration and as importantly my anxiety for him. I agree that there is absolutely ZERO point in making him do the walking thing once a week or however often- he's not ready, it makes him sad, and it won't make any difference. But showing you how to teach him to pull himself up will. Have you got the book 'Developing Gross Motor Skills in Children with Down Syndrome'? I would recommend it, especially if you're going to go it alone. You can pick an choose from heaps of things which ones you want to do- lots of ways to do it. Can you research other providers. I believe that therapy IS valuable, but that all therapies are not created equal. Sorry for going on, and good luck :)

Brandie said...

"Children with disabilities deserve to have and enjoy typical childhoods just like every other child"

I think this is important. We just cut Goldie's services in half because they were getting in the way of activities with her sisters and Dad. We also decided that when Goldie turns 3 we will not be sending her to school 4-5 days a week. She deserves to have a childhood and will go 2 mornings a week just like any other kid. That also means we are not sending her in March when she turns 3, but will wait until the fall. I don't think she should spend her preschool years in a classroom just becuase the system says she quailifies for it. I'm glad to see I'm not alone in my thinking.

Beth said...

i am struggling with the exact same issue at the moment, and I have no idea how to bring this up when on eof them is here. We want to keep only our ECSE teache, because Lauren IS actually learning from her, but the PT and OT we could do without I think. And speech, well, we still havent met her, so she can probably go too.

I am so proud of what Lauren has accomplished (mostly on her own) and Finn too!

Hector and Jennifer Varanini Sanchez said...

This is a really interesting topic and I'm curious what others think. What I find most interesting is that so many people claim that early intervention services are what has changed the "face" of DS. But perhaps early intervention coincided with babies and children with DS being included in the family and treated like any other child and not institutionalized. So interesting to think about it. It's funny, the Institutes program that we continue to work with believes the parents are the best therapists and they actually asked us to discontinue all services...hmmmm....maybe they are on to something. They also believe that every child is capable of great things no matter what the disability and it's just a matter of giving them the opportunity to learn and to express themselves.

Hector and Jennifer Varanini Sanchez said...

I meant to also add that we have not discontinued EI even though the Institutes recommended it. We decided that since the service was free that we should take advantage of more eyes, ears and hands working with Joaquin. However, with the budget cuts and the possibility of our services being taken away, I will see what happens. I think I'll become more and more picky about what I choose to do. I have already decided to privately pay for music therapy in our home. And as long as I see a benefit from it, I will continue to pay. I can honestly say that our PT too will be something I fight for. She assists me in figuring out ways (and correct ways) to further Joaquin's mobility and to correct errors in movement before they become a habit. OT and Speech...not sure about although I'm a big fan of Rosenfeld-Johnson and do her techniques on my own since our ST doesn't seem to want to do it.
Very, very interesting stuff Lisa! Thanks for sharing in depth the book and your thoughts. I've enjoyed it.

stephanie said...

Very interesting post. I don't think Emilia is doing what she's doing because of therapy either. Every kid is different as are the parents. You're on top if things, it shows in Finn. He's doing great.

Laurie said...

The way that I look at it is that yeah, one hour of PT once a week may not necessarily help Dylan learn to crawl more quickly, but what DOES help (IMO)is watching the PT work with Dylan and then using those strategies while D and I play on a daily basis. Same with OT - I dont think that he has all of a sudden learned how to drink from a straw necessarily bc of her, but rather bc of the tools she has given me to best work with Dylan every day. She also helps me to come up with ideas on what to feed Dylan and has kept me accountable with that. And speech - we have just started that, but I can see it's going to be the same deal - she has given me ideas on how I can play with Dylan while also incorporating speech stuff.
Ultimately, it is up to us to help our kids, I think. But, at least for me, EI has helped by giving me the tools and support to best work and play with Dylan.

Sonia said...

Very interesting topic Lisa! I think I can truly understand both sides of the topic...I think.

I look at the therapies Lillian is receiving as tools. So far, not one of her therapist has forced her to do anything that she was not ready to do. They always followed her lead, which maybe is why I don't mind her therapies. Also, we only have 2 a week and they both fit into our schedule and not theirs.

We do take breaks in therapy sessions. We have to! I sometimes need that feeling of normality...meaning having nothing on my plate that I have to get done. And her therapist don't complain about my breaks either.

But really, what is best for you and your family is your choice. In the end, we are the ones doing the therapies with our children and we are the ones who truly recognizes when they are ready for that next step.

These things, like walking, sitting up, crawling shouldn't be forced or they won't be enjoyable.

But I can also see those parents who can't see that these things will eventually come and maybe pressure their therapist for faster results, more work and more therapies. These are the parents I think make it hard for everyone else.

Susan Carson said...

Hi Lisa-
I just want to tell you I love your blog- it always makes me think, plus Finn is just so cute! I also read a lot of the blogs of the other commenters here- thank you all for sharing your experiences. My own cute boy, Anthony, just turned 6 months old. Here is our blog:
I have started reading "Disability is Natural" too and am having similar thoughts. My line of work happens to be "Evidence-based Medicine" so I am always looking for what the evidence is for the various therapies. It's disappointing that there really isn't a lot out there, especially when therapists say things like, "Early intervention makes a HUGE difference." I'm not sure the facts are there to back up those kinds of statements.
Anyway, for now we'll continue with physical therapy. Anthony has an appointment with oral motor/speech therapy next month. I'll be interested in what they recommend.
I hope you'll continue to share your thoughts on the book.

Tara Marie said...

"Children with disabilities deserve to have and enjoy typical childhoods just like every other child"

This is exactly why we, as a family, chose to opt out of EI.

Evelyn Parham said...

I ran across your blog doing a search. I recently had a blog for my daughter, but I have closed it. I will reopen my blog on another platform soon, but I'll sub to you via my reader.

When my daughter was 7 months old I pulled her out of the state funded Early Intervention program. I was afraid to do it, but I followed my heart. Before we opted out..the PT told me that my daughter would be slow at walking, have problems, and not walk like I want her to walk. She really made me feel bad, almost as if I had no other options, but I stood my ground with what I wanted to do. The PT was wrong in her predictions about my daughter. She's been walking on her own unassisted since she was 15 months I did a lot of referring to Gross Motor Skills for Children with Down Syndrome and I just went from there.

My daughter is now 3 years old. She's doing very well. We are looking into getting speech therapy for her, via a private route, but even with that I am working with her and using supplemental materials to help her with her speech.

Children with disabilities deserve to experience life, like any other child. I personally don't want my daughter growing up thinking she needs to be fixed or something is wrong with her, because she is who she is.

This is the path we chose to take, but I recommend others to always do what they feel is best for their child. If they feel the EI program is beneficial to them, then stick with it.

Sorry so long, but I wanted to share my experience with my daughter.

Blessings to you and your family.