Monday, December 03, 2007

Goodbye to Self

(I came across this article while reading up on therapy. It disturbed - and challenged - me.)

Where is the child in all this? The unique individual who came into the world expecting a fanfare and champagne, only to find tears and disappointment?

For a disabled child the world can seem very strange indeed. Lots of adults paying attention to "something" of which the child is completely unaware. The child's sense of self always includes what others call their "impairment" as an integral part of their being. The only "them" they have ever known. If they are in pain, they probably want it to stop. But apart from that, the child is like any other, driven to learn and become itself - a whole, new person with a body, mind and soul.

A disabled child, even with major difficulties in moving, speaking or processing information, will seek to gain control over self and the environment according to their own inner motivation. Through endless interaction with others and the material world, through play and experiment, trial and error, laughter and tears, every child develops their personality, skills, and sense of belonging in the world. When other people assist the child to initiate interactions, the child learns to expect co-operation from others, and confidence in her/his self. Play and therapy are not the same thing. Play is about the child's goals, therapy is about the adult's goals. (emphasis added) The more impairments a child may have, or the greater degree of those impairments, the higher is the level of professional intervention, the less will the child "play" and the more they will be directed by others - and the less ability will they have to protest or get away!

Many "programmes" for young children involve forced manipulation of the child's limbs for several hours a day, by adults the child may not even know. It is difficult to know how the child can cope with this without "shutting off", going numb, or giving up in some way. The "medical" model of disability attacks ones' relationship with oneself because the assumption is made that the impairment is the enemy, but in reality the impairment is part of the person, and only the person can themselves choose to separate them without feeling torn apart. So uninvited intervention, however well meaning, is a form of violence to the inner being.

Micheline Mason


Elbog said...

I haven't said much, because, well, I haven't said much about this topic. We were doing therapies 3-4 times a week for quite some time. There's what works and is right for your child, and there's what - as this article points out - those activities that satisfy a clinical model and not your child. Emma never "combat crawled" on her way to walking, and various therapists' efforts to force her to do so actually had Vicky and I laughing out loud during one session, at the therapist. . . we finally stopped some of it, and at 3 most of it became part of her public schooling. No one will know your child better than you will. One of the real issues for me became a quality of life issue for our family as a unit - it had to stop revolving around appointments. You're developing a sense, and you need to trust that sense, beyond what any of us , doctor, therapist, activist, in-laws, ad nauseum - tell you. Watch Ian. Know Ian. You'll do what's best for him.

bella said...

"The "medical" model of disability attacks ones' relationship with oneself because the assumption is made that the impairment is the enemy, but in reality the impairment is part of the person, and only the person can themselves choose to separate them without feeling torn apart."


amber said...

Thanks for sharing that with us, Tom. Obviously, a lot to consider. Sometimes as parents we must go against the grain in order give our kids what they need….sometimes we don’t. Luke and I just had a conversation last night about a similar topic, childhood vaccines.

Tricia said...

This does challenge a lot and brings up a lot of good points. That very first paragraph had me imagining a birthday scene with people waiting behind a door ready to shout, "Surprise, congratulations!" only to look let down and sad when the birthday boy or girl walked through the door. Imagine how you would feel if you were the one who's b-day it was! So sad. "Oh. It's just me."

But besides all that. I think there is a difference between militaristic (for lack of a better word) intervention and having someone come into the home with whom you & your child have built a relationship with who helps them with new tasks.

Think about it, if you broke your leg and needed help relearning how to walk, you would likely want a PT to come in and help you with that. Now, I don't mean to connote breaking a leg and an innate difference/disability. It's not always just about fitting in when it comes to therapy, but, for us anyway, helping our child learn how to do things more efficiently so that she can participate more freely in the world.

That said, if a therapist came in (especially if they were new and had not yet formed a relationship with us) and simply said "She has to do this or that" just because "that's what babies do!" I would put a halt to it.

We have been lucky enough to have therapists who keep Georgia's abilities in perspective at all times. Our therapies truly are about baby steps. We deal in very small increments which I think keeps some pressure off. And sometimes that means SKIPPING steps because Georgia has grown past them.

Anyhow...thoughtful stuff.

Tom said...

Elbog: I was reading in one journal about physical therapy where someone said they can always spot those who don't undergo any PT because of their walk. Kind of freaks me out a bit.

I know what you're saying about appointments... it's starting to get that way with visits to the Dr.

Appreciate the encouragement to trust myself... if only I could pay someone to make all the right decisions for me.

Isabel: I thought so too.

Amber: I know; every time Silvi or Ian gets a shot I wonder.. "Did they absolutely need that shot?"

Man, forget about learning why E=Mc2... teach me how to make these decisions in school. :)

Tricia: Thanks, Tricia, for taking a few minutes away from your walk to the P.O. to write down some good thoughts... I don't know if you clicked on the link of the author that I quoted, but she's writing from her experiences with some pretty limiting disabilities.

I had some of the same thoughts you brought up, and assume that the
author was writing based on her experiences during another era.. I
know much has changed. I think I'll always wonder what Ian would say
(about all the decisions we're making for him) if he had the words... and maybe he will say something about it one day.

We have another assessment on Thursday with one of the PT's...
Decisions, decisions, decisions....

Later, and thanks again. And about getting a part-time j.o.b. ... my
wife works one day a week in a daycare (yikes!) where our kids can
play as well... works out well, although it takes Annie a few hours to recuperate afterwards. "No ... more... kids!"

Leah said...

Hmmmm I, for one, think this person has never experienced play-based therapy! HELLO! It sounds to me like this person didn't have a good experience with early intervention, something that is very sad, indeed. You have to make decisions based on what your child needs, as each child is an individual. But we do know some things about DS. We know where the delays USUALLY (but not always) are. The difficulty is predicting which child will have difficulties and which will not. What we DO know about DS is as infants and toddlers get older, where they're on target tends to slip further and further away. To be on target at 3 months old is very typical. To be on target at a year or 18 months old is NOT so typical. We also know with DS that WAITING for the delays to show up doesn't work. Instead the goal is to try to KEEP the child on target, because once they start falling behind, the gap widens quickly.

Angela was on target for everything until she was 18 months old. But you see, walking at 18 months is the END of "norm" on the spectrum. Angela didn't walk until she was 24 months. But with all other areas, she was still on target. Well, her language was all in sign, evenso, she had a vocabulary of over 600 signs at 2 1/2 years old. But that slippery slopes started at 18 months.

Therapy doesn't do the child much good. It does EVERYTHING for the parents. The child doesn't get much out of that hour or half our. But the PARENTS get tools! Tools and strategies to help keep their child on the right path. To learn that in order for the child to learn to do B&C, he must first do A...which the parent may not even realize there IS an A!

When you have a child who is typical, they just grown and develop in front of you. You really have no idea the work that went into each step, because it happened so fast. But then the child with a disability comes along and suddenly you realize what a miracle it is, and all the work that goes into something as simple as sitting unassisted, or swallowing without aspirating, or holding their head unsupported. You realize all the pieces that have to be in place for those things to happen, that you didn't even know were an issue!

THAT is what therapy is about. It's not about torturing a child, it's about helping your child be as successful as they can be, and knowing you did everything you could to get them there.

Ok...jumping down off my soapbox now.

Michelle said...

its interesting, because I really and genuinely respect the folks that make the "other choice" here. I know that for some kids, therapies are vital. And I know that we may not be the norm. But we did what worked best for our family, in large part because, as this lady says, constant therapies made Ciarra feel like a project to be fixed versus our daughter. Now, not everyone feels that way. But we felt it keenly.

I was reading in one journal about physical therapy where someone said they can always spot those who don't undergo any PT because of their walk. Oh, how I would love for that person to see my daughter walk, run, play baseball! she does not walk differently than the other kids, not a bit. And she had no pt. But thats MY kid, and we are discussing YOUR kid. And what it comes down to is this: YOU make these calls.

It seems like you are really looking for support in a feeling that you are not terribly interested in immersing him in therapy. You can find both sides of that support, and someone will always call you crazy. In the end, you make the call and live with the consequences, and always always remember that HE lives with the consequences of whatever choice you make.

I can tell you in our experience, we would not change a thing. Who knows why my daughter does as well as she does? is it because we chose to let her be a child whose life was dictated by her own wishes, or is she somehow the lesser for that? would she be any closer to "normal" if we had done massive amounts of therapy? Is normal all that important? For us, this has never been about wanting normal. It has been a lot like attachment parenting, child-led, parent-followed. And for us, it works.

We did the big disconnect from the great plan very early on, after much of the same debate and discussion you are having now. It might work for you, in large part because you are a researcher, a reader, a studier, and keenly observant. You will know if the time has come for therapies. You will study ways to play with him that revolve around PLAY and not around therapy. Maybe you will join Communicating Partners, as we did, and find true justification for taking control of your world back and recognizing that YOU are his best therapists. But only you can make that call, and it is a tough one to make. Wishing you luck, does that help?

Tom said...

Leah: No doubt the author had some pretty bad experiences. I'm just wanted to throw out her perspective since she can speak for herself as one who has a disability.

I'm glad that therapy has progressed as far as it has in modern days; we'll meet with the PT next week again to begin planning out some long terms goals. And I appreciate it when you get on your "soapbox;" it gives me things to think about.

Michelle: I'm so glad your daughter is doing so well, without therapy. I'm sure those first days when you had to make these decisions must have been as tough as they are for us. Like any parent, we just want the best for our kids....

Like I said to Leah, we're meeting with a PT next week to set some long term goals... I think we'll make more decisions from there. I'll write more as I know more :) Thanks for your impute... it helps.