Friday, August 28, 2009

More on Therapy

I don't doubt that there are parents who are horrified that I would want to deprive Finn of therapy. Don't I want him to be the best he can be? Don't I want to help him reach his maximum potential?

Of course I do.

A big part of what bothers me about early intervention is the one-size-fits-all philosophy behind it. Yes, I know services are supposed to be individualized, although I can't say our services are really individualized. We're offered PT at birth, OT around 12 months, and ST around 18 months; when the child with DS/Finn is walking, he is expected to give up at-home therapy and receive "global" therapy (20 minutes each, once a week, of PT, OT and ST) in a "therapeutic" preschool. That seems pretty cookie-cutter to me. Any additional services or variances from the usual protocol require a battle with Regional Center.

Anyway, let's say for the sake of argument that all the services are specifically tailored to the individual child (as implied by the IFSP). The mere fact that services/therapy are recommended for ALL babies/children with Down syndrome takes on that one-size-fits-all feel. I was told when Finn was a mere few days old, after he had been diagnosed with Ds, that he needs therapy because he has Down syndrome. They all do. They benefit from it. Early intervention makes a huge difference for them.

Gosh, I am so sick of the whole them and they. Where does Finn, my son, the individual fit in to this scenario? How does anyone know that Finn needs therapy? How does anyone know that therapy is benefitting Finn? All these assumptions that they need therapy, that they benefit from therapy - that's addressing the diagnosis, not the person. And Finn is a person, not a diagnosis.

Maybe therapy will help him walk a month or two or three sooner than he would without it. So what? Why is that better? Is this a race to the finish line? Will walking at 18 months instead of 22 months make the quality of his life, and our family life, better? Can any therapist guarantee that with therapy, he will in fact walk a month or two or three sooner than he would without?

Interestingly, three of my other kids were "late" walkers. Joey and Daisy both walked after they turned 15 months, and Annabelle was over 14 months old when she walked. I believe that I was over 15 months old before I walked. There's nothing wrong with any of them or me (and my twins were not premature, so there was no adjusted age to take into consideration). They just, for whatever reason, were not interested or motivated to walk before they walked. I wonder if therapy could have helped them walk sooner. Maybe. But so what? Would it have changed the outcome of anything except the dates I could write down in their baby books (you know, assuming I had baby books for them . . .)?

Another thing I don't like about early intervention is the assumption that my kid is so fraught with problems that surely our family is not competent to raise him without the help of experts and professionals. Experts and professionals who, by the way, do not have children with Down syndrome of their own. Who probably have never even had a personal relationship with a child with Down syndrome. All their knowledge comes from classes and books and workshops. How much do they really get it? And why can't I be trusted to competently raise my own child?

I'm not saying that Finn doesn't need help and encouragement. But what child doesn't? None of my kids came out of the womb crawling or talking or walking or anything. Eventually, they all figured out how to do the things that babies and kids do. Through the experiences of typical childhood activities. Playing. Interacting. Being touched and hugged and loved and talked to. Who is anyone to say that isn't enough for Finn?

10 comments:

Tara Marie said...

Wonderful post Lisa [as always......I so love reading what you have to say, and watch as you and Finn travel on this path less traveled].

The one thing that really makes me laugh to this day is this comment that I get all the time.

"Wow, isn't it amazing what they can do with kids like your daugther?"

First, I ask, "Who is this 'they'" and then I politely tell them that she never received EI, so she is actually exactly who she was destined to be by the pure fact that her development blossomed with love, nurturing, encouragment and a Momma who read every book she could to make sure that I could provided extra care in areas that she might need them in.

and you know, I firmly believe that EI is an important program and should be available for every child that needs assistance if the parents so choose to take that route, but this 'one-size-fits-all' and your are going to 'deprive' your child if you don't subscribe to the system is what I disagree with.

Khourt said...

I felt the same way with all of my kids.. except Alo.. I really pushed therapy for Alo.. but thats kind of different. Doctors pushed therapy for Kaia but I never budged. He didnt need it. Being a little delayed is nothing to freak out over.

Before Aybra was even "delayed" they suggested therapy or *gasp* sending her to a special needs daycare! I dont even have Alo in a special needs daycare!!

Now I understand the whole "early intervention" idea and that its designed to intervene early, but I think its way overused. They dont even give kids a chance these days.

Loren Stow said...

Your posts definitely get me thinking! Malakai has been receiving therapy since he was 3/4 months old, and in my country this isn't a benefit we receive - I spend one third of my salary on a medical aid to ensure that therapies are covered.
I didn't know what Kai was going to be able to do and what he would need help with - and he's doing great! Is it the therapy? Sometimes I agree that I think he'd be doing what he's doing regardless, with or without his weekly PT, bi-weekly OT and monthly ST visits.
What I can say is that therapy helped ME to understand more about development, so that I understand what are age and ability apporpriate activities for Malakai and me to do together. Could I have read this all in books, probably, and if financially I could not longer afford my medical aid, I wouldn't want to lie down and die.
Ultimately I know that Malakai will be Malakai, perfect whole and complete.
You go forward and do what you know is best for you and your children - you really cannot fail, because you know what is best for each of your children every step of the way!

Catherine Just said...

great thoughts on this topic. We weren't automatically given services. Max had to PROVE he had a 33% delay in order to receive them and he only had a 10-15% delay so he isn't getting OT and just barely got the OK to receive PT. SO for us in LA it does seem to be more individual based on need rather than everyone just gets it. Also - I think it really does not matter when Max starts walking but I do want people to help him walk that are professionals because there may be a tendency to walk with legs in a position that isn't as helpful to him because of the muscle tone issues. Luckily Max is strong and doesn't have much of a muscle tone issue so that all might not be necessary.
I don't want him to have 2 PT per week, 2 OT per week, infant stim, and all of that. It seems OVER THE TOP for me. And he doesn't qualify for it so we don't have to deal with saying no to all of that.
But I really like that you say Finn isn't his diagnosis. That is SO true of all of our kids.

heather said...

I struggled with this with Morgan too. Utah only offers therapy once a month (and it was a 'newborn specialist' not PT, OT or ST) for the first year. I felt panicked because everything I read contradicted such minimal therapy. Why were families in Florida getting therapy 1-2x/week and not me? Apparently there aren't as many babies in FL. compared to Utah and the tax dollars stretch further there. I even signed her up for private PT thinking it would help her walk sooner. Looking back I think therapy (remember only once a month) was helpful to me because it was a cute girl that engaged Morgan and played with these really fun toys that were new to her. She loved it and it was a break from all the guilt for me for a minute. But I was never good at following through with the exercises they left me. I think I could have done just as good of a job with using the book about gross motor development in Down syndrome. The main thing is just to make sure your child is doing things correctly and not learning bad habits that will cause hip and knee problems as an adult. That said, I think speech therapy after 2 years old is worth fighting for. I saw a big improvement in Morgan's speech once we started speech with her. Good luck with your decision. Once again, like everything with our children, there is not one right way to do this. That's what makes decisions so tough!

MaggieMae said...

You make a good point. However, our personal experience with EI was absolutely individualized to the extent that we got what we wanted when we wanted it, more of it, less of it... whatever I thought the boys needed. It was a great experiece with mostly phenomenal and forward-thinking therapists. (Our CPSE experience has been much more cookie-cutter and I'm not liking it... very "they" and "them" thinking.) And, I do believe EI and even CPSE (much as I wish they weren't already in preschool 6 hours/day) has helped the boys development stay on course and follow a more typical trajectory. Is that better for them or even good? I guess so in the sense that they are more like their typical peers than not... and that makes inclusion and acceptance easier for everyone -- for my boys (they will feel less different) and their peers. I think that's a good thing. Should it be necessary for them to be more like everyone else? No! Is the world perfect? Not! So, for now, I'm going to say therapy is and has been very beneficial for us.

You should absolutely do what you believe is best for Finn! And, they'll all grow up and learn everything they need to survive and thrive... either way! Love your POV, as always.

MaggieMae said...

OK, here's the only other thing I'm going to add... It has definitely been shown that people with Down syndrome benefit from interaction and inclusion and early intervention. The historical treatment of people with Down syndrome is a devastating story and proves, in my opinion, that early intervention, constant interaction and inclusion in the family and community results in individuals who live healthier, longer and more independently, who are integral parts of their families and communities and who make valuable contributions to our society (valuable from a societal standpoint b/c as we all know, every human being is valuable) as compared to those with DS who spent their lives institutionalized).

Now, I know you're not talking about institutionalizing Finn nor ignoring him or his development at home. You are a mother who will interact and teach to the degree that is necessary specifically for Finn to develop to his greatest potential... as you will do for each of your children. So, perhaps, for you, formal EI is not as necessary as it may be for someone with less direction, fortitude, faith and plain old ability to do so. Still, you can hardly say that intervention is not better than not intervening on behalf of the individual. Just depends on which manner of intervention you choose.

I think the whole thing is quite comparable to the homeschool or public school debate.

Lisa said...

Maggie, I appreciate your thoughts here. I guess my point is that "intervention" can take many forms, and it doesn't have to be in the form of formal therapy from a team of trained therapists.

I suspect that in years gone by when people with Ds were institutionalized, the biggest two factors that kept them at such a low level of functioning was that their medical needs were not addressed, and they received no stimulation or integration into community, no interaction or love. They merely languished, were provided shelter and food, until they died.

Playing with one's child, showing them affection, reading to them, talking to them, encouraging them, and providing them with opportunities to explore the world around them - that all counts as "therapy" or "intervention" if you will.

Ria said...

I find it interesting that the EI in your area has a set chronological age for when kids can receive certain services.

Here, we started PT and DT when Matthew was a month old. Then when I felt he was ready for more, we added OT when he was 3 months old. And ST when he was 8 or 9 months old. We currently have PT and DT every 2 weeks, OT and ST twice a month. I think that's relatively minimal. I believe that therapy helps but it's what we do as a family that will help more.

Anyway, I requested for these services based on what I thought he needed, where he was at with his development and not because the EI person said so. The therapists have also never guaranteed anything as far as when he would walk, etc. They always just gave me suggestions on what to work on next, step by step. So in this regard, I am grateful that our EI doesn't take the one-size-fits-all approach. And I've always told our therapists that I want the focus to be that Matthew does things correctly and I'm not concerned with how quickly he gets to a stage. I just want it done right. And whenever the therapists point out certain behaviors, etc, which I think could run in the family, I'm always quick to remind them about our background, etc. The therapists need that sometimes to put things into perspective and remember that the kid they are helping is an individual, not a "book definition of Down syndrome".

I hope your therapists are able to really see Finn for who he is. And whether you decide to cut back on services or increase should not be an indicator of what kind of mom you are. You know your kid best. The therapists are just there to provide professional input when needed.

Great post!

Sharon said...

I think it should be a decision made by each parent since our children and our situations all vary greatly. Our EI is also very cookie-cutter (set ages at which therapies are added) which seems so wrong. I met a mom recently whose 2 year old daughter has never had therapies and she is walking, signing, starting to talk, obviously learning and thriving....a definite endorsement to skipping therapies.

My Brennan has reeeaallly low tone, so I do worry about him picking up bad habits to compensate for this. I don't know about other therapies - but I've read that the goal of PT for kids with Ds is not to get them to do things sooner, but to make sure they do them correctly (http://www.ds-health.com/physther.htm) - but, again, only a concern for those with lower tone.

As always, follow your instinct. You know what's best for Finn, for you, for your family.