Monday, February 23, 2009

A Maroon Thing that Made John Talk

I've been trying to write this and trying to not write it for days. I have conceptual paresis. I've been chewing some information about John for some time and I can't swallow it. It's against my nature, but what I would like to do is just give up, take the chewed up mouthful outside to some well-prepared soil (never mind that good soil has to be imported in this time and place), and put it in the bottom of a little hole and plant a little flower plant in the hole. Then in about two months, when the flower blooms, I will come back and instead of ever chewing this whole thing anymore, I am just going to sniff it, only for a second.

I know why John gained speech. There are three reasons and this one of them is the biggest. It's a little maroon colored gelcap called coenzyme Q10. And it's kicking my butt.

The fact that John is talking is good. The fact that John is talking from CoQ10 probably indicates that he has a progressive disease.

I was the one who came up with the mitochondrial disease idea, 11 months ago. John's doctors, as far as I know, had him in the "he has X except for a few funny things which don't match but which we never think about except every 6-12 months for 30 minutes" category. But it bothered me. He had these symptoms that were not supposed to be found with his diagnosis. One day, 11 months ago, someone I distantly know posted a note that her somewhat-similar-to-mine son was just diagnosed with an unknown mitochondrial disorder. Because of the somewhat-similarness, I immediately went and looked up this thing that I had never heard of. And I spent about two months in a state of oh boy (after which, by the way, I thought I was fully adjusted). I wrote John's pedi but things happened and we didn't get to meet about it. He referred us to the neurologist, but the wait to get in was so long that John had had his summer weird falling down into the hospital by the time we would have seen him. At the time there was no metabolic doctor in our area for him to see and I didn't even know what that was anyway. But that's all past.

Fast forward to the end of summer, when the city had just acquired a nice new metabolic doctor, and it was almost like we met coming down the bottom of two slides. I always like making a good impression by meeting someone for the first time at 3 PM when I have slept the night before in my clothes, am tired from a day of being blown off by good old boys and praying during weird tests, and am sitting in a kid hospital bed with the rails up nursing my three-year-old. As it should be, though, this doctor met us as gracefully as if we had invited him for tea presented by a full serving staff. And it went normally from there, except that unlike normal doctors, I could understand almost none of what he said the first two hours, and I still haven't gained enough experience with this topic that I can guess what he is going to suggest or even how he will structure our visits. I am very slow to adjust. I had been complaining to other folks for about two years that John had lost a few skills and such, but now that we have a doctor who gets out a pen and says, "Okay, since we last saw you, what skills has he gained and lost?"- when he says that, I can only stammer while my mind goes completely blank.

So, this doctor's quest is to try to figure out if something metabolic is going on with John. We started with a huge quantity of blood tests and detailed interviews and exams. If certain of the tests don't lead anywhere, a next step is a muscle biopsy. They take a big piece of muscle out of his leg, flash freeze it, and hopefully keep it frozen and send it to all sorts of places and do things to it to look at the mitochondria and some other little tiny things.

Last time we met, I was prepared to explain why I had changed my mind and didn't want the muscle biopsy done then. Instead, our doctor suggested the same thing when I was only in the first sentence of my argument. He suggested that we do a trial of CoQ10, which is one of the main medications prescribed for mitochondrial disease. I am not going to explain CoQ10 here. I'll write about it when I am feeling cheerier.

There was one catch to the three month trial, which was important. I couldn't tell John's therapists anything about it. There is a good reason, and that too belongs elsewhere. It sounded pretty easy, and I went out right away and got the stuff.

It is supposed to take some time to get the level built up in your blood. John had only been on it for five days when he had his first therapy session. It was PT. He was acting so strange. He was agreeing to try a large number of new things and enjoying them. This was not my kid.

Two days later he got a bad cold that erased a lot of therapies from our calendar. But you know what happened after that. It started with the molasses cookies and went up where it is now, a beautiful, improbable point that I am tired of trying to describe.

We kept going to therapies and he would do things, like say the therapist's name, or meet his goals, do something he wasn't supposed to be able to do, talk in sentences.... At first it was kind of fun to just smile when the therapists commented on how well he was doing. Then it became outrageous, and finally ridiculous. I was feeling like an idiot, not being able to say anything to them. It was impacting his treatment. For a couple of weeks I told them there was something I couldn't tell them, and finally, I told one.

There was something part of me liked about the blind trial. It was a little like pretending it wasn't happening. I could just be ignorantly happy along with the therapists at how well he was doing. But in another way, I didn't like it, because by four weeks in I knew: his strong positive response to CoQ10, an important ingredient in multiple ministeps of the respiratory chain, pointed to what was wrong. And it was hard to be the one tasked with temporarily hiding our new hint of what was wrong, because, dammit, I'm the mom.

The good news and the bad news. I am sitting on my fingers to keep myself from apologizing for being dramatic. I can apologize later, and maybe later I will even be able to write and say I was all wrong about this. You know, I went to read family stories on the MDA website today and the first one I read was about a boy who was misdiagnosed with a more serious disease than he had. On the other hand, I've suspected this for a year with that mommy gut feeling and have just been waiting around for some doctor to get on board.

But back to being the mom. It's possible, though not certain, that this little experiment could help a large number of patients, and I don't regret trying it in this way. My personality is perfectly suited to extending denial by 9-10 weeks. It was hard because when John was doing the great new things, if I was really completely honest I would have said, "This is killing me. I'm watching him do so well and knowing it means he is going to go downhill."

Things were complicated by the fact that about 7-8 weeks into the trial, we told another doctor about the sudden speech. Through a flurry of excited running about and doctor to doctor talk, I got some secondhand instructions that didn't make sense about the trial, and to get it worked out, I called the metabolic doctor's office three times and never got a return call.

I held out on the original plan for two more weeks (but still not to the end of the 3 month silence period) before telling a second therapist. I was starting to get the explanation into a package that was easier to say. When I got home I felt like I had been punched in the stomach. That made either two-thirds or three-quarters of John's therapists knew now. It had suddenly become real. Fortunately I didn't have to face any more professionals for 72 hours. When the 72 hours was up, I kept practicing and told five people in one day. That night we had instant pizza for dinner.

It had suddenly become real, but it is going to suddenly become real 100 more times before I will know how to sit with the possibility that John is much more vulnerable than we realized, that his ups and downs are a fact of life that won't go away and could get much worse.

I am not so good at pacing myself, even though someone mentioned the concept once when John was 15 months old. I thought for a long time that we were just remediating a static, stable condition with John, until now. That's officially true, but also, I was starting to see signs of something else going on before I was even settled with the static condition (settled never happened, by the way).

The stupid 12 weeks are still not over and as you can see, I've given up and am broadcasting this now. I have been mentioning it in some settings, since before this blog started (it started in the middle of the trial). I was mentioning it, to try to get situated with it. It sort of works (that means it doesn't work, well, a little). I have some other ideas about getting comfortable with this that I'll write about if and when they happen.

I wish I could step out of the administrator's position for a while. I wish I could blow off all the therapy homework and halt all the helpful processes I initiated and now have to keep up with, fight for, or make decisions about. I wish I knew how to just clean my house and play with my kids and that's all (though we have rented two Eddie Murphy movies so far during the med trial and I have never, ever rented a comedy and only a few non-kids movies in my life, so that's a step). I wish that when John has a cold, is slurring his newly acquired speech, and his muscle tone is like Raggedy Andy, that I could just enjoy snuggling instead of enjoying snuggling while being scared and sad. But that wouldn't be complete.

John has a great attitude: he's been low energy for a week and feels like a gummy worm to me but he still constantly asks me to find a new toy for him to play that's fun-fun-fun. Tonight when we were about to go to sleep, he did something new again. You could tell it was a huge effort, and he did it with his Baby Bop doll bouncing on his knee. He recited the entire chorus of Baby Bop's song that is repeated through more than one Barney video: Look at me, me, me. I'm three, three, three. I'm as happy as can be, be be. Can you tell? Can you see? I'm a very very very happy me!

He's four, not three, but that doesn't take away from the performance at all. He really embodies the song.

I know all that stuff I wished is possible. Well, maybe not stepping out of the administrator's position, at least for long. But it is the way we do things, not the what we do. I know there is a way of being (that I don't have to attain perfectly) that will allow all this to exist at the same time, where there is no right answer, where as long as we keep showing up we are doing just fine. The impossible-looking easy paradoxical magic is getting from that knowing to the actual being.

Friday, February 20, 2009


Tuesday, February 17. I unpacked our suitcases. The ones from the last week of July.

Tuesday is the morning I've started to use for paperwork, because the house is empty for three hours. This Tuesday, both kids were home with a fever and there was no chance of the house being empty. I was disappointed. I've had this kind of half-success, half-false-hope thing going where on Tuesday mornings I would take a cup of 50 pennies and a quickly improvised plastic tip container, and put a penny through the lid slot of the container each time I got rid of a piece of paper on my desk. If things were going well, I could get through the 50 pennies more than once, especially if I gave myself 5 for phone calls. Last week the practice resulted in a clear space on my desk the size of three sheets of paper.

That wasn't going to happen today. I walked around the house and a big chunk of sludge was following me, composed of expectations, conflicting beliefs, and cement of mope. It was when I was walking into the house and kicking my shoes against a board to try to get the mud off them that I thought: as long as everything already seems impossible, I should think of something harder to do than the desk. The kids had fevers, but besides John running slow and sister hoping to watch lots of movies, they were okay. What is harder than the desk? I know, our taxes! No, that is paperwork. Okay, the suitcases.

We had breakfast and got the entire kitchen table set up for a large-scale tempera paint experiment with fingerpainting paper, involving a muffin tin and brushes for John, and various tools and license to directly squeeze paint from the bottles for sister. I only had to go back into the kitchen to help them every few minutes, which didn't matter because I knew I would be walking through the house a lot to put things away.

The two suitcases were on an extra bed in the bedroom. I got the cup of pennies and tip jar ready.

The first couple of hours were spent in clearing a path to the extra bed, because of the popcorn popper, ice shaver, food scale, Barbie roller skates, bag of used shoes that didn't fit the foot braces, last year's swim diapers, dollhouse basement, and all that stuff people usually keep in their master bedroom. I thought I might be defeated without having ever reached the suitcases, but we stopped and ate lunch and the kids moved on to other things besides paint. They were doing so well. They were expanding into the completely free time. There was a rough moment where John was sooo frustrated about a difficult flip-top squeeze cap combined with necessity of a diaper change, but after butting heads we stopped and snuggled in the recliner and then it was okay. He got back down on the floor. The kids quietly, recuperatively played more. The bedroom floor was swept and I was almost to the suitcases, having removed many of the things on top of them. I had lost count of the pennies around 108.

In the last week of June I had packed the borrowed suitcases, for our sixth trip to Massachusetts. They were full for the three-day train trip and month of therapy and classes. It was a good trip, but as you probably know, the morning we woke up to get back on the train to Texas, we didn't, because John just fell over and ended up in the hospital. So many new threads were begun then. As though displayed in a shallow, beautiful wooden bowl, the richness of all the therapy and classes now sat with hospital interviews, lab tests, insurance snafus, Google searches, and the notebook where I wrote all the grams of John's in/out food and liquid.

The suitcases were waiting in the guest room of our infinitely patient host family, being lived out of again while we waited for a handicapped sleeper car to open up on the totally booked Amtrak. (Due to a physical defect, I can't travel by air.) Once Amtrak was resolved, it came down to the subtraction of the numbers in the notebook. John was too dry: he wasn't drinking, and it was shown in his output. The hospital, falsely reassured by a non-drinking boy artificially plumped up with lots of IV fluids, had discharged him, but now he was dry.

There were a lot of phone calls and emails. I learned for the first time the fact that liquids are harder than solids to swallow, and thinner liquids are the hardest, which makes it hard for someone who only likes water. In the end, one of the doctors who called me back from Texas forbade him to travel until his urine output rose up to a certain number. What's more, she did the forbidding and instructing all in under 6 minutes. She had a busy, tired, but ferocious and brilliantly competent manner and she told me to stop trying to get him to drink. Instead I had to superhydrate his purees. Mix water into his applesauce and pureed spaghetti. I listened politely, and inside I was thinking: never heard of it. Could a few spoonfuls of water really help?

It worked, and we could travel. After one last set of labs, we got on the train. We still didn't know what had happened to him, if he would fall over again, and really what to do about it. I was nervous. I was thankful that I had recently acquired my first cell phone.

We made it to Texas.

When we got home, on the extra bed was some clean laundry from while we were away. The suitcases were put there, with crucial items pulled out. The small one quickly got used for a new hospital stay, then put back on the bed. I proactively stuck some good hospital toys in there for the seemingly inevitable next trip. And even though there were a few times when I cleared much of that space, it kept attracting items. It was starting to get embarrassing.

My attention was just not on the bed. It was on hanging on while whole new chapters of my kid unfolded slightly faster than I could comprehend. It was again on weighing everything that went in him and came out of him. It was on seeing him not get the predicted g-tube and being relieved, but still watching as though he was a stack of bent, full boxes that had just fallen down and would surely fall again. It was on writing down when he laid down and couldn't get up, how long he laid down, what happened before he got like that. It was on reading stories from other people working on some of the same things. It was on going to see four therapists and six doctors. On being given license to figure something out, figuring out The Resting Protocol, and it working.

It was on one day realizing that four months had passed, and he had gotten back to his old normal. Then, just as I started to stand up from my long-term crouching, box-stack-watching position, something came out of the sky: John started talking. That was a freak weather event, like an unprecedented 10-week storm of coins or candies, something good, that nevertheless surprises the crap out of you and knocks you down. For 10 weeks the storm kept coming and I laid on the ground beneath all the coins and candies while all the therapists said, "This is wonderful! Aren't you excited for all this talking!" Um, absolutely, but could someone shovel a few bushels of these treats off of me so that I can get up and go get a turkey sandwich?

I think I managed to get the metaphorical turkey sandwich a few times in that period, but the bedroom is beyond the kitchen, so the bed was still unaddressed.

Back to Tuesday: the cleaning had been going on way too many hours, with scores of kid assistance visits, and the suitcases were still there on an impressively clear bed, emanating some unknown substance that makes people leave their suitcases out.

No way, you guys. You are going in the closet. Now I was talking to suitcases. The kids were closing in on me, sister sitting on the main bed, John demanding to be entertained with random contents of the suitcases while I tried to put away the last 30 or so items. This was the last chance. Feeling like David Banner, I lifted up one suitcase at a time and forced my way to the back of the closet. The sheets, long unused except by the rabbit, were put in the washer.

It was clear.

Wow. The bed, and blenderless floor, looked really good. I kept popping in to look at the empty space. I was ready for the next new thing.

Well, after I got over being exhausted. The next new thing came Wednesday, blessedly insignificant, in the form of two crate-sized cardboard boxes of wrong diapers that a truck dropped off and someone put on the clear bed.

That space was awful for six months, and beautiful for 20 hours.

There is nowhere else to put the cardboard boxes right now. Oh, that bed looked so good empty. I might have to clean the closet.

But I couldn't clean it Wednesday, because that was the day we had to dive into juniper trees to catch 22 ducks.

Monday, February 16, 2009

Two bedtime stories

I am at the computer. It's almost bedtime. John crawls into the room.

"Mama, mama."

"What is it?"

"I need someting dat's fun-fun-fun. I need a toy to pway wit."

"Oh. Well, how about if I carry you in to Daddy and put you on the bed and you can wrestle!"

"No! I need a toy dat's fun-fun-fun fo me to pway wit."


I let him play with this little unknown object on the side of my computer. If you push it, a stick thing pops out. If you push the stick thing, it goes back in. Then I try again.

"I know. I'm going to Carry you in to Daddy, and you're going to see his Newspaper, and you're going to Go up to that newspaper and KNOCK it down!"

-pause- "O-KAY!"

We make a big deal of stomping across the house to find Daddy to knock the newspaper down (the universal sign for bedtime wrestling). Then I get the beds ready and check on sister, who has a fever. I feel helpless and guilty. I give her what I can think of, but I'd rather make it all better. I wonder if she has a fever because today was her day off from school, and all we did was let her go to grandma's house while John went to appointments. No, she had a sore throat for two days. No. Maybe.

I lie with the kids while they fall asleep. John goes right out. Sister is mostly asleep. She tosses and turns.


John has a new project of talking himself to sleep. He tells little bedtime stories that he makes up, and repeats them over and over. Sometimes he drifts off, wakes up and repeats them a little more. The first one ever was a summary of a Barney story about a strange noise heard at bedtime that turns out to be a squirrel outside the window, eating a nut.

The second story is mysterious to me. It starts, "Dirt, is hard." You have to pronounce dirt with no r to get it right. "Mommy, is dirt. Dirt, goes in the eh-uh-fa-do."

There is one last crucial sentence in the story, but it is completely unintelligible.

At this point I would say, "John, did you say dirt?"


"Did you say dirt goes in the elevator?"

"No! Dat's not what I said. I said someting ewse."

"Oh. I'm sorry."

Then he would tell the story again.

We went through the question about did you say dirt goes in the elevator, so many times, that he has changed his story. After "Dirt, goes in the eh-uh-fa-do" he now says, "I'm sowwy. Dat's okay. I said someting ewse" and then the final sentence.

Last night's was about a duck. "I heard a noise," he begins. "I heard a duck, going ring, ring, ring. It was a quacky duck. I heard a quacky duck going ring, ring, ring. I heard a quacky duck going quack, quack, quack."

I'm glad I could keep myself from asking for clarification with the duck story. And it's kind of nice to have someone tell me a bedtime story, even if he's mostly telling himself. Cause I'm going to have several bedtimes tonight, one for every time I wake up to check on sister.

Sunday, February 15, 2009

It's Always There

I have discovered an endless natural resource. It's a fuel from the meaning contained in my child, and it is used for a special kind of traveling.

Sometimes I think of the endless in terms of the overwhelming and mundane. The piles on my desk are endless. The housecleaning is definitely endless. And, as far as my child goes, it's possible at times to see the administrative tasks, the sheer volume of things he needs help with, the medical issues, the Unknown, as endless. But this is a richer endless.

The force and depth of what we go through gives a soft, penetrative quality to any aspect of my vantage of Us. It makes it possible to access myself, through that field of Us.

"You have pushed so much away that now it seems impossible to make room for it all, but that is your [child's] legacy to you."
Stephen Levine, Meetings at the Edge, p. 2

Through that initial push of: baby joy, worry, disappointment, shock, anger, exhaustion, pride, acceptance, sorrow, and humor, all in one relationship, I was invited to a place of cleansing, treasure, and peace. Again and again.

It can take a lot of days or months of beating my head against the wall on the way to get there. I get stuck on whether I am doing it right, on imaginary things I think I must do to be acceptable, on actual barriers, on judgments of others and myself. I can want to be in charge. Now everyone, listen! I am creating the universe today, and the first order of reality is removal of all Cheerios from the floor, and this is more important than the seasons, the elements, and life itself! (as an example) Or, okay, we are going to Fix this kid! I am imagining this all better, so that. . .um, I won't have to change diapers in ten years and I will be able to eat a meal putting the food into my mouth instead of someone else's. I refuse to. . .Whoa.

My child's meaning is a door for me. A door to me, a door to God.

Through surprise at deformity and pathology, I discover what is real in being alive and human. Having your eyes point a certain direction, having all the parts of your brain, being able to walk - these are definitely human, but they are not quite right on.

Through anger, I discover the very weight and fact of our existence. We have need, we are imperfect, and we turn to others for help, and they may be imperfect. In addition to anger, there is just the fact of all of us together, imperfect.

Through wrestling, giggling, and drifting to sleep, I discover comfort and timelessness.

Because my child is always around, I have so many points into that work, when I want it. If he dies first, they will still be there, because I will have grief, and his memory. If I die first, if I'm lucky, I will have enough warning to touch them through concern for his life and through potentially surrendering that concern. So the resource is pretty much inexhaustable for me, for my lifetime.

Eventually I come to believe that it's possible to go to that place without starting at a specific situation. The place doesn't exist because of the situations. They are an ideal way to get there, though, because they continually pop up for us. We don't really require permission to go there, but we somehow may need the situations' frequent pokes in the butt to go there. The place is what is endless. It can really take some struggle to touch it though. And I won't lie, it takes pointing out by other humans who are rich enough to share it with us.

Hmm, the place is endless, and the doors are endless.

Some traditions teach that we are half animal and half angel. We are so fortunate, because our nature thus always leaves the ladder down for us to touch, should we want to. It's always there.

So, I love my son, but I also love the fact of having been given this son in this way at this time. It is a lifeline back to love itself.

Tuesday, February 10, 2009

What do special needs moms do all day?

Which of these things did NOT happen in the actual day of one mom to a child with special needs?
Not all events in day are included.
You may mark more than one answer.

A. Meditate

B. Send children to school and Mother's Day Out.

C. Wash breakfast dishes.

D. Read new entry in Hopeful Parents blog and cry. Link to more entries, cry more. Realize that valuable paperwork time is being lost. Realize that crying is equally valuable. Oh well.

E. Go for short walk, contemplate carrying three year old abandoned chunk of moldy hay home.

F. Receive call from husband reporting that officials are attempting to conduct an armed raid of the business of a family friend and he is going there to provide moral support.

G. Remove bubble gum, three types of paper, four red trucks, dishes, cause and effect toy, crumbs, more art supplies and large pile of unfinished valentines from kitchen table in attempt to mentally transition between F and H.

H. Conduct a race to see how much paper can be cleared from desk in a responsible fashion. Score 20 pieces of paper, 3 phone calls regarding SN child, and 1 large unit of paperwork regarding SN child.

I. While driving, see husband driving his truck going the other way from you on highway, a normal part of his workday. Call husband to say hi. Listen to husband report that moments before, while he was inside a convenience store, his truck slipped out of gear, rolled down a hill, crossed both sides of a large state highway, went over an embankment, and landed in a hole in a golf course, soon to be swarmed by sheriffs and police. Listen to husband report that truck is fine and no one was hurt or arrested.

J. Pick up SN child from MDO. Drive home in peace. Remember yesterday telling speech therapist that child (who has "secondary" PDD) does not seem to grasp social concepts, use social language, or have interest in peers. Drive. Hear child from back seat suddenly say, "I like playing with Daniel."
Try not to have an accident while clapping and cheering. Not an accident like our kids have, well, that kind too, but you know, a driving one. Hear child say, "I wike pwaying with Daniel at schooow. Daniel, is NICE, toMEEEEEE!"

K. Hear SN child, same one who does not use social language, say IN CONTEXT in the span of one hour, both "Thank you" and "You're welcome."

L. Facilitate rest period for SN child. Deliberately sit down to be with typical child. To keep butt glued to chair, stay busy by cutting out a lot of paper hearts in the spirit of helping.

M. Moderate fighting, playing, feeding and bathing.

N. Wash dinner dishes.

O. Experience shock when SN child, upon being picked up to be carried to bed, gives you a huge hug, the first conventional one in memory, and says "Mommy Mommy!" with glee.

P. Watch more rain fall, third time in two days, during conditions of exceptional drought (D4).


Answer: Only two choices did not happen. They are letters in the name of a large cable news channel. (But I did all the dishes, yesterday.)
I still don't believe some of the others. What is going on around here?

Monday, February 9, 2009


Here is a list of sentences uttered by John this weekend, Friday through Sunday. Three really good ones were taken from earlier in the week. Yes, I kept a clipboard with me much of the weekend. Sometimes I had to request him to repeat multiple times before I could understand them, but not every time. Keep in mind that they sound like he is talking with a mouth full of potato. I am too lazy a transcriber to record the way they actually sounded. If you have never conversed with someone while sharing potatoes, then imagine that a machine has come along and magically removed 67% of the consonants in every word. Other important thing to remember: It was five weeks and two days ago that I was thrilled that he echoed the single phrase "goofing around" because that was such advanced speech for him.


The wind is blowing right through my hair.
I want both.
I only want crackers.
I went down, down on the ground.
Mo is getting all ricey! (Mo is a stuffed frog and John was having Mo sit on the edge of a tub of rice, feet in rice, for sensory play.)
I want some very very much.
I'm going to play with a washcloth.
I love Mo very very much.
I want Mo very very much. (Crying, because Mo belongs to John's visiting teacher and was no longer at our house)
I miss Sissy.
I like milk very very much. It's very very yummy.
I have naked toes and naked toes and a naked knee.
I heard a knocking.
Okay, I will see if it's hot or cold.
Cheerios. I want some in a dish.
Okay, I would like to do that.
I want a clean paper.
I want to make a road out of blocks.
We have to move the cart.
I put them right together.
I didn't know they were closed.
I'm down here with Pooh.
I put Pooh's nose right in my mouth.
It fees silly.
Pooh went under the strap,
It is me hiding. I was hiding in the cabinet.
I was doing great watching my bus movie. There was an elephant in it. It was walking. It was gray.
No, I'm not in the forest.
I had so much fun at the park.
I don't know how to put it in. I need help.
No, I want them there.

Mom's Favorites

No, I'm really really pooping.
Look what I made! A line!
I'm going to tell Mommy I went on the merry-go-round and the swing and on the merry-go-round again.
There's something I need that's fun fun fun. (says this when bored with available toys)
I'll show you what's in here. (in confidential tone)
Uh-oh, I have to turn the wheel.
I'm looking good!
I had a lot a lot of fun at the playground.


There are just four more things I want to say about this.

1. No, we were not expecting sentences to happen. Not now, not at all. Well, maybe hoping, but not expecting, and only in distant fantasy.

2. Honest, we do not use the popular adjective "a lot a lot" in our family!

3. John and I were given a great gift recently when he went to one of his many doctors. It was afternoon. The doctor asked if he could examine John. Slowly, John said, "That would be fine." (This was out of character because a) John spoke at all, and b) he hates being examined and used to scream the whole time.)
The doctor commented that it was the nicest that he had been spoken to all day. To me, that was a like a gold medal.

4. Any sentences containing pleading or convincing were learned from carefully observing older sister.

Sunday, February 8, 2009

Accessing Health Care - Part 1

Accessing Health Care - Part 1

Today's guest blogger is Christopher Sabine. He has an MA in social work and has optic nerve hypoplasia. I have been reading his posts to our septo-optic dysplasia listserv since the day I subscribed almost four years ago. Over time, his descriptions of his personal experience in overcoming some of the sensory and behavioral characteristics of ONH have been helpful to me in understanding what things might be like for John - not to mention inspiring in general. He has a knowledge of educational and health bureaucracy issues that have helped a large number of families. Another thing I like about his writing is that he's not reluctant to provide his opinion, which often includes elements I hadn't considered, and he clearly identifies it as such. His consulting service is ONH Consulting.


My name is Christopher Sabine, and I am an adult with Optic Nerve Hypoplasia. I am 35 years old and live with my parents. I have a Master's degree in Social Work and currently operate ONH Consulting, the only national firm dedicated to providing service coordination and other support services to families impacted by Optic Nerve Hypoplasia and Septo Optic Dysplasia. I am significantly visually impaired and use a cane and other blindness accommodations.

Recently The Boston Globe published an article concerning the reluctance of physicians in the adult health care arena to treat people with disabilities. Based on a newly released report from a state chapter of a prominent public interest group representing people with developmental disabilities, the article focused on the continued reliance of these patients on pediatric specialists well into adulthood. The results of this report come despite a long line of government and private initiatives to bridge the sometimes yawning gaps between child and adult-oriented health care in the United States.

The gap between pediatric and adult health care for many with disabilities has been well recognized as far back as 1989, when then Surgeon General C. Everett Koop held the first national conference on health care and transition. Around that time, health care practitioners began realizing that increasing numbers of patients were living beyond their diagnoses. Medical treatment and technologies made it possible for many children with significant disabilities to live into adulthood. Special education curricula and community supports arising from the deinstitutionalization movement that began in the 1960's afforded these children access to employment opportunities, housing and leisure activities never conceived of before. The need for a coordinated approach to transition children with significant congenital health conditions to adult health care providers became all too apparent.

In 1996, The U.S. Department of Health and Human Services launched an initiative called Healthy and Ready to Work. A key goal of this initiative was to transition children with chronic health conditions and disabilities from pediatrics to the adult health care system. I can share this information with some expertise, because I worked from 1998 to 2001 as a service coordinator for one such program, where I worked with youth, families, schools and service providers to connect a caseload of primarily urban youth with various disabilities to employment, adult health care and recreational opportunities in the community. My work connected me with a variety of professionals in the arena of health care transition at the state and national level. I always had the sense that this experience would prove vital in my own life at some point in the future.

In 2001, the grant funding for our program expired, and my job for Healthy and Ready to Work ended. Two years later--after running into some difficulties at two other jobs--I began researching my own condition. What I found was that optic nerve hypoplasia was increasingly viewed as a neurological condition- not just another cause of visual impairment, as my parents and I were led to believe. I found that sensory integration and behavioral characteristics, which had dogged me all my life, are fairly common in children with ONH, and in fact, very little was known about ONH among professionals and families alike.

One thing I did find was that pituitary dysfunction is very prevalent among children and some adults with ONH, and I needed to begin seeing an endocrinologist. I've experienced bouts of persistent, low-grade fatigue all my life, and this can be related to hypoglycemia due to low growth hormone levels.

However, most of the endocrinologists working with patients with ONH work exclusively with children. There is almost no knowledge of ONH among endocrinologists who work with adults, and it is even uncommon to see a case of secondary or central hypopituitarism in an adult endocrinology practice.

I first contacted my local children's hospital- one of the best pediatric teaching hospitals in the country with an esteemed endocrinology program and active patients with ONH. Not surprisingly, I was told that no one could see me as an adult; the admissions coordinator also indicated that none of their endocrinologists had an adult practice. This is despite the fact that our children's hospital is university-affiliated and regularly shares resources with a large regional adult teaching hospital.

My primary care physician was no help. He could only give me a general phone number for admissions at the adult teaching hospital which, it turned out, primarily dealt with Medicaid patients. I could find only three endocrinologists in our entire metropolitan area that even served adults- none had heard of ONH.

Frustrated, I called a contact at our state's bureau for children with special health care needs (CSHCN). CSHCN is a federally mandated program that provides durable medical equipment and physicians' services to children with chronic health conditions. CSHCN programs are typically administered by county health districts and sometimes municipal health departments and are geared for children requiring specialized medical treatments or interventions. Some children with ONH have qualified for these services based on Pituitary deficiencies or other medical complications.

My contact forwarded my inquiry to the director of our CSHCN bureau, who received his medical degree from the same university where I completed my undergraduate work away from home.

The director referred me to one of his colleagues in a joint adult and pediatric practice affiliated with the university. He is the director of the department of endocrinology at the university's school of medicine. He has worked as an endocrinologist for nearly 25 years and has military privileges. While he has not had a patient with ONH, he did have one with central hypopituitarism.

Though I've been fairly satisfied with him as a doctor, barriers still remain. His office is an hour away, and so are all diagnostic labs affiliated with the university where he practices. This means that I can't even go for lab work locally and be sure that the results would be forwarded to his office. This became an issue when my insurance denied me coverage for growth hormone treatments as my levels were borderline.

At this point, my only source of transportation to his office is my mother, who works as a retail store manager and is sometimes called to work as needed due to limited and sometimes unreliable staffing. Even if I could find a local endocrinologist, transportation is still a potential obstacle. For example, though our pediatric and adult teaching hospitals are near public transportation, getting to medical appointments typically involves navigating complex, frequently changing campus environments. Literally learning the way to the doctor's office can mean paying out of pocket for specialized orientation and mobility instruction- from another old professional contact from the Healthy and Ready to Work initiative.

Saturday, February 7, 2009


Medical Supply Company A

Mom: Hello, I got a recommendation that your company is a great place to order diapers and other medical supplies through Medicaid.

Rep: That's wonderful.

Mom: I'd like to get some information about how to obtain diapers. I have a disabled child who is 4.

Rep: Diapers? Well, what are your other needs?

Mom: We only need diapers.

Rep: Ha ha ha! (wipes tears of laughter that are rolling down face) Don't you have other medical equipment?

Mom: Yes, we have a wheelchair, a communication device, and a combination copy/printer/fax machine.

Rep: -silence-

Mom: No, we do not have a g-tube, breathing equipment, catheters, or any of the things you're thinking of. I realize that we are very lucky.

Rep: Well, that would be very challenging. Usually patients need more supplies than that.

Mom: Okay, well, thank you and I'll call you when we have more supply needs.


Medical Supply Company B

Mom: Hello, I got a recommendation that your company is a great place to order diapers and other medical supplies through Medicaid. But there's something else. I'm about to tell you what we need to obtain, so please don't laugh.

Rep: Huh?

Rep B told us that it was no problem to get diapers and that they are called "incontinent supplies." They took down the size and brand of diaper that we have used previously. As soon as they got approval, they shipped out a package with two types of diaper samples. The first one was almost big enough to fit me. The second one looked fine until we tried it. It gave our little patient a sort of chemical abrasion or debridement of the foreskin. I tried them two days and got the same result both times, and it disappeared when the old brand of diapers was resumed.

The rep called to ask how the diapers were.

Mom: One was too big, you know, the. . .oh, what were the brands called again?

Rep: Well, there were blue ones and white ones.

Mom: Oh! (mentally switching to convenient new naming system for diapers)

Mom: The blue ones fit, but they gave him aaaa, rash every time we tried them.

I was stricken with partial inability to communicate, just at that crucial moment. I think it was a pre-existing glitch triggered by the new diaper terminology. What I meant was "chemical abrasion."

Rep: Oh, no! Did you try the moisture barrier cream with the diapers?

Mom: Um, no, you didn't send any.

This is factually true, but what I meant to say was "The skin reaction was not on his buttocks, it was on his foreskin, and I don't want to use that product in that area. Also, you didn't send any."

Mom: Our local children's hospital uses Brand X and they work fine for him; do you think we could access those?

Rep: I'm going to speak with someone and see what we can do.

Mom: Thank you. (Hangs up phone.) Arrrrrrgh!! Abrasion! Foreskin! Why couldn't you say foreskin abrasion?


I admire the moms who matter-of-factly can state which types of IV adhesive cover their child can tolerate and not tolerate. I don't envy their need for it or any other medical supply. I know they came to their simply-stated knowledge by trial and error too.

There must be a term for what happens when we know exactly what needs to be conveyed, and we can't convey it at the right time. Maybe ICV, for inability to convey verbally. If you don't experience this, well, it's a cousin to the near-universal inability to make snappy comebacks when addressed rudely or absurdly. Anyway, it happens to me with doctors. (Also, unfortunately, with any person I like.) For me, it is kind of like intention tremor, because the more I would like to say something, the less able I am to say anything at all. The good news is that it prevents me from saying a lot of the odd things that are being uttered in my let's-cut-the-small-talk mind.

Or, if I get started speaking to doctors who we have known for a while and who welcome discussion in their exam rooms, then I notice that I can't stop properly for the other guy to speak. Of course, it takes time to get comfortable with someone, and time to allow the existence of the number of sentences that need to be said. This is an amount of time that today's medicine doesn't always have. So I will need to learn to not just speak truly and clearly, listen, process, and speak again; I will need to do all of that in brief summary form. All of our physicians have probably been carefully trained in how to make the most of their 15 or 30 minutes. We, on the other hand, have had no training and have the same number of minutes in which to interact regarding: somewhere between 1 and 50 things, which are all probably emotionally charged.

Last fall we saw one of John's specialists and much of the time was spent updating him on events and symptoms. I left there thinking, "Gosh, I would have liked to hear what that guy has to say. Next time I am going to ask him to talk and make a deliberate attempt to not interject while he is speaking." Three months later, we returned to that specialist, my resolution intact in memory. But...we didn't see him, we only saw his very nice, calm and smart nurse practitioner.

It didn't matter. I was just practicing.

I tried it on her anyway, but she had nothing big and new to say -- except, with sincerity, "Just let us know anything we can do for you."

Well, you can do a lot worse than that.

And the diapers? It's totally normal for things to not work out the first time with insurance. Insurance is like rain, snow, high heat, and wind. They oppose us at times. But it's often possible to make use of what they do provide.

Update: I had to reopen this post and update it to create a title, because just as I was putting it into the posting window, John burst into the room, kneel-walking, over his normal clothes wearing a black Spandex homemade scarf with silver polka dots, and a stunning turquoise straw hat with a hatband made of tiny white bead-flowers. The hat was covering his eyes.
"Wow! John! Look at your outfit! That hat is fabulous!"
"My, hat, is, nice."
I came over and kissed his hands. Kissing and exclamation points aren't the sole activities in our family, but he earned it with the hat.
"My, scarf, is nice, too."

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.