Sunday, February 1, 2009

"I'm Walking"

When John was 12 months old, the age when many babies learn to walk, he was just getting stable in sitting but still needed a mat in case he fell over backward. It was before we began the BMC work, or I wouldn't have put him into a sitting position when he couldn't get into or out of it himself.

At 13 months, John started working with his teacher Bonnie and he learned to kneel-sit and go on all fours briefly. At 14 months, he learned how to push himself up from the floor into sitting. At 18 months, we were trying to teach him to crawl. Soon he got his wheelchair. And at 24 months, we were back to see Bonnie in another New England winter and he was learning how to pull to standing. It was very difficult. Bonnie later said "He had tremendous resistance to standing."

Back in Texas, he was 26 months old and we tried a new private (as opposed to Birth to Three home visit) physical therapist at a place that I now think of as the torture clinic. On one of our first visits, I saw a little boy of about 3, sobbing and pretty much screaming as he tried his new walker. I didn't know him well, and I was no doubt supposed to pretend that he wasn't there because of privacy, but it was memorable. I felt unsure. The therapist examined John and said, "This kid really needs to be walking." I know, I know, he is 26 months old. I know that kids usually walk at 12 months. I know.

At the time I already had some beliefs in place against force-motivation, and we had taken three trips for an entirely different, miraculously effective system of motor therapy, but those things weren't enough to stop me from pushing through the unsure feeling (and warning from a family member) and trying the clinic. I had a kid with moderate/mild, atypical CP, which the doctors weren't ready to write on paper because of his other brain anomaly diagnosis. We were still in the period when I saw the other children at the park who were his age, and compared. I didn't know who he was going to be. In a stiff, remote way, I could describe the range of possibilities for people with his condition, and the neurologist even wrote in his report that the mother had realistic expectations-- but given John at 26 months and that just-words information, I couldn't touch the real John with one hand and any hypothetical future with the other hand.

We went to the clinic about three times and it was mixed. In attempting to communicate with his therapist, I wasn't expanding our common ground as much as slowly feeling the contours of our two very different worlds. It is awkward when you are a parent and you know one person a thousand miles deep, and the professional has known hundreds of children, a lesser unknown number of miles deep...and the professional is acting like an authority. It is awkward when they are filled with expertise and you are paying them and you want it to work.

I didn't know I was going to write about this when I started to write about John walking with his walker.

John was sometimes unwilling to interact with the therapist in the way she wanted. It sure seemed to me that she wasn't reading many of his communication cues, and asking a mix of good challenges and too-hard challenges from him. I now feel pretty clear that when my kids don't want to interact with something or someone, it is because certain parameters of appropriateness aren't there. But I might still make the same mistake again. This goes back to the tree I hit on my sled and didn't know I could jump off to avoid. So he was acting like he didn't want to do things, and the next time we went to therapy, I decided to sit far away in case I was having negative maternal influence.

I sat far away, and an old friend of John's happened to be there and she started to help the physical therapist. I watched. They enticed him to pull to stand on a huge container full of toys and he started looking at the toys and touching them. The therapist worked with his legs. So far, so good. He started to cry. His old friend tried to distract him. Time began to stretch on. He was standing there for an awfully long time. He was uncomfortable. Then his old friend was asking if he was stuck. I realized that he was stuck by his armpits over the edge of the container and he couldn't get down. I realized that the therapist knew he was stuck and had no intention of getting him down. This was before the suspicion of possible mitochondrial disorder - with mitochondrial disease in the muscle you never push a patient like this. He was standing up there for so long, because "This kid needs to walk." He cried more and more. Was it possible that whatever she was doing with his legs was so crucial that it meant he needed to cry like this? I was both outraged and frozen. Finally the time was up and the therapist unhooked him and let him down. I came from far across the room, sat several feet from him, and spoke, so that he could crawl to me and I could hold him. He turned toward me, still crying, but instead of crawling, he fell onto the mat. He physically couldn't move. I went to him and picked him up.

The therapist cheerfully tidied up and told me she thought children cried like that just to experiment with emotion and that he had done great.

We had screwed him. I knew that more and more after minutes and hours. And days, because it took a long time to really know how wrong that had been. He became clingy. He developed a new fear of any office of any sort. He did not want to pull to stand. And for some reason, he became very afraid of the back of my car, where I changed his diaper on outings. He didn't want to be put into any vulnerable position. I called and terminated him as a patient. His old friend met us another day and with relief I listened to her tell me it was killing her when she was in the session with him. We had been assholes, all three of us. (I use that term for what we become in the inevitable times in life when we brace and absorb shock to avoid pain and then it hurts us more because we stop living.)

We did what we did because none of us were up to feeling the pain of seeing a 26-month-old who can't walk. (And this could have been anyone, with any disability, at any age, I now know.) We wanted the problem to be solved, quickly, easily. We wanted him to just walk without ourselves stopping, waiting to see what was really there and who was really there. Got atypical cerebral palsy? Can be put into a standing position? Here, let us force you to start acting in a way that we think is normal so this can all go away. But force, by definition, cannot solve. Now I had a little boy who still couldn't walk and who was daily reminding me of the extra pain that I put him through because I wasn't able to face the first pain.

I might have shared the view that his session was a success, and he might have been walking sooner. Or, with the physical stress, he might have gotten sick earlier, allowing them to suspect mitochondrial disease sooner. It's not unusual in this culture to expect that children will cry and be resistant in physical therapy. A wise older friend who has been in the therapy business explained to me that several of the alternative approaches to motor therapy also use a lot of pushing, they allow the children cry as they work, and they do end up with children who can move better. Having seen for certain that a way existed for John without that, though, I chose to stop. It's hard for me to imagine enjoying having proficient use of your body when you have gained that use by being forced to move against your active and continued protests, especially if you are nonverbal and can't explain the reasons for being upset, or if you are emotionally immature and don't have established ways to cope with great stress. I would guess that moving might possibly always hold some transparent tie to that force and discomfort.

I think what we did was immoral. Can you imagine your grandmother perhaps, let's say nonverbal and nonambulatory, trying to recover from a stroke, being pushed in physical therapy, tricked into being hung in a position she couldn't leave, worked until she fell down on the floor sobbing and unable to move? Hopefully people would find that wrong to do to an intelligent person who could once speak. At the time, I felt that I was probably holding a minority view about therapy, but I was angry enough that I wished that would be the fate of this therapist when she got old. I wish that I had any hope that filing a complaint would make a difference; instead I just went back to John. We worked together all spring.

26 months.

At 31 months John worked with Bonnie again and it was the hardest time ever, for him in their work. They did cover a lot of things, but he wasn't as curious and eager as past and future times. I wonder if he was still coming back from that one very bad hour. It was harder for me, too: I was just starting to see that I, the team leader, had wanted it to all go away, and that it all going away was no answer. In our classes, I also felt what walking really is in my own body for the first time. It would be a year before I felt how important pulling to stand is to walking.

At 38 months we found a new physical therapist. She scheduled a time for us to come and just visit. John played with a train set. She watched him and talked to him. We chatted. She didn't try to mold him; in fact I don't think she touched him at all. He started seeing her for therapy, and over a few months I discovered that she wasn't going to force him. She understood his communication and treated him like a plain old person. They played a lot and John had a great time being engaged with so many silly activities and new physical games. I sat quietly watching, but underneath I was amazed that there was a place where he could be treated so well. After weeks of this, I was so happy for it that I would spend most of our long car trips home crying (though that only lasted about six months). When the new therapist only knew one way, she owned up to it. When John was sick and we didn't know what would happen, she handled it. She could change approaches, and make predictions that didn't work out, without freaking out. Basically, she seemed to be in touch with reality as it ever changes. I didn't know I needed to see what that looked like, put together with my child.

I used to mistakenly think that John's brilliant response to that brilliant therapy called BMC was somehow related to its being "alternative." But here he was with a regular physical therapist, progressing. I saw both the therapist and John being able to exist in dignity, authority, and agency. I saw those qualities existing separately from ideology and method. And, in the odd way that has been there every past time I've seen dignity, authority, and agency, it felt as though I saw them for the first time.

John is still working with his new physical therapist. By the way, he doesn't like his walker, and doesn't like his new foot braces, and we've been trying to hold that as part of reality. This week, he willingly put on his foot braces and new shoes, and agreed to use his walker. He crawled to the hallway of the clinic, announced, "I'm all ready to go!" and stood up in his walker. Then he started walking down the hall. For the first time. He said, "I'm walking!"

He and the walker walked to the end of the hall and around a corner, to the secretary to deliver some pretend bread to her (the walker was his pretend bread truck). They walked all the way back to the treatment room. We couldn't believe it. It was a happy moment. I wasn't sure what I was supposed to do; I was just surprised. I praised him and gave him a lot of hugs and kisses after the session. Within ninety minutes I developed nervous gastrointestinal symptoms and started crying and just wanted to go home and go to bed. That's okay, because at least I did give him hugs and kisses and there are tons of times when we cheer for his small accomplishments at home.

"I'm walking." 48 months. Not 12, not 26. I've read a few calm-sounding stories by parents recalling that their children first walked at age 4, or 7, or 12, and now I understand in what way the numbers don't matter. The numbers matter, because we keep trying, we keep working to help the kids do what they might be able to do, and we know how late it is; but they don't matter, because the right time happens at the right time. He wasn't even walking independently; it was just the first time he used his walker. But since he stated it himself? yes, he was walking.

The next day, he walked again with the walker, practicing crashing into the fridge for fun. The day after, no thank you, not interested, though the interest will almost certainly come back. And, in a spirit of variety, he did some other things that to us seemed remarkable. On the "not-interested" day he wore his foot braces to playgroup and crawled around his favorite playscape. When it grew dark, we stopped on the way home to get a smoothie for him and solid food for sister and me. As we began our drive home, I heard from the back seat a type of whining that has been common the past year. It goes: "Maaaa-aaa-muuuuuhh! Maaaa-aaa-muuuuuhh!" I don't really like it and I used to ask John to stop, but now that he can say a few things, I sometimes ask him to try to speak to me.

"John, what is it?"


"No, tell me what you want to say. Tell me what's wrong."

"I'm bored."

I didn't hear wrong. He said he was bored. This is a kid who has only been putting words together for about nine weeks.

The next day at bedtime, he surprised us again. Right when John was supposed to lie down on his pillow so I could turn off the light, he squatted and began trying to stand without holding on to anything. Repeating the instructions given to him by his physical therapist, he said in a babyish way: "Hands down. Put my butt up." (Yes, he's using pronouns correctly.) He got more than halfway up. His sister was cheering. He kept trying--anything to keep the lights from going out, I guess--and a few repetitions later, I put my hand behind him so that he could get up a little farther. With that support, he could make it all the way to standing for a couple of seconds, without touching anything with his hands. He was saying something over and over that I couldn't make out, so I listened as we did it again.

"Wuh, aa, mee!"

"Look at me! Look at me!"

I gave more kisses and hugs.

We're looking, John. You're great! (kiss)

And, we still have to go to bed.


  1. Wow, I'm crying. What a beautiful "ending". Go John!

  2. Thank you for sharing this story. I'm so glad to have read it. What an amazing little boy you have, and what an amazing mama you are.

  3. WOW, with tears falling. I just happened to stunble onto your site It is amazing how they go at thier own pace. It teaches us alot. thanks for sharing your story.