Eating rice with words on a moving sidewalk

I got to eat my old words a couple of weeks ago. The aug comm representative whose product line we don't plan to use sent a nice email to check in and see if he could be of service. By hitting reply, he happened to include the text of my very first email to him (to any aug comm rep), where I had described John and asked a lot of questions.

On October 24, 2008, I had written:

If I was to guess I would guess that within 18 months he would be able to 

combine words and that eventually he would have sentence ability and more.

If we assume that the 18 months would begin after acquiring a device (and we haven't acquired one yet, so perhaps they would begin around May 7, 2009), that would put him at combining words into phrases on November 7, 2010.

So why John? Why did he get a miracle talking cure?

Or is it a miracle talking cure, if the public can't understand him and I am still translating half of what he says to several intelligent people who he loves?

Communication with the public is undetermined for now. A mommy's translation is high- quality but not omnipresent, including across time. But to me, the team leader, and the vessel of mommy love poured in from some universal source, this talking is substantial and miraculous.

Some people's efforts did set my estimate straight, -er along the way. Just days after I wrote that guess email, a new speech therapist who specialized in aug comm took over John's case. Being both experienced and judgmental, I don't expect too much from younger professionals who don't have kids. But she sat John down with his 9-button talking machine that he had back then, played for a few minutes, and said that he was too smart for the 9-button device and that she would like him to trial a more advanced device that I had coincidentally been reading about the night before. I perked up, like someone who has been camping for days on a nonfunctioning moving sidewalk at the moment when the power comes back on.

The next time we walked in, there was the device, a Vantage Plus, and in three weeks with about nine practice sessions, John was saying some single words. They were the words from the Vantage, by the way. We stayed with this sprinkling of words until a doctor came along and started up another broken moving sidewalk, and soon the words were a torrent.

I was frustrated the past couple of weeks, about not being able to reach Dr. Sidewalk, about the nonanswer I got when I did reach his office, and for a little while, about the 9 months that passed waiting for this amazing treatment. I mentioned it to a mom I know who works in the medical field, and who has no doubt seen a lot of both healing and death. She calmly pointed out, "At least you found it sometime." Oh yeah. 9 months, as opposed to never.

That little sentence was so well delivered that I even got completely out of my progressive disease funk for the time being.

We have found so many answers that have taken John so far. Why us? Is this related to some future assignment for me? I hope so. Or, is the present assignment enough --stop, and accept it honorably.-- ?

I sat down at the computer this morning to order more of the magic maroon gelcaps. John wanted something fun to do, so I gave him his large container full of rice, with scoops, a Jeep and some tiny people to play with. It took a long time to check the products and place the order, but it was okay because John was being so good in the other room with his rice. When I was done I got up and came into the living room. The container was empty. Rice was everywhere: the living room, the kitchen, the bathroom, in every toy, on the piano. A thin layer of white rice was evenly distributed over the entire play area.

I made the involuntary noise that moms make when they discover this sort of thing.

"Who made this mess?"

"Djon!"

"And who is going to clean it up?"

"Mommy!"

"Um, I think you are going to clean it up."

"No. I am gonna make another, big, mess!"

Yeah. Let's make another mess while the sidewalk is still moving.

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."

"Ohhh."

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.

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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?"

"Okay."

"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.

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?

Sentences

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.

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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.

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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.

Diapers?

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.

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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.

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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."

Who Did That?

Last night John tooted four times in succession.

"Oh! Who did that?"

"Dohn." There was a pause as he became thoughtful, then declared, "MEEE!"

I was so surprised and excited, I felt like I sprouted enormous yellow petals all over my body during the split-second in which my jaw dropped.

"John! You used a pronoun! Yay!"

"MEEE!" (Of course, I should know by now that when I get excited about something he's going to want to say it again.)

I practically sang, "Me! I tooted" and John compliantly copied, "Mee! I doo-dih!" over and over. Meanwhile, big sister was patiently waiting for the boring toot-talk to be over so that the lights could go out. It wasn't exactly that John used a pronoun, it was that he referred to himself with a pronoun and he did it spontaneously. Are you sensing how hard it is for me to restrain myself from typing "himself" and "spontaneously" in all caps?

I still can't believe it even as I write this.

Just last week, John's PT and I were listening to his new words and we agreed acceptingly that it would be a long time before he referred to himself as me or I. What caused this jump to happen? Acceptance? Coincidence? Coenzyme Q10? Barney?

As if I wasn't surprised enough, today we made a quick stop at the library to return books. I reached to transfer John from carseat to wheelchair and--? he wouldn't let me touch him. He insisted upon getting down himself, though slowly and with help, and crawling all the way into the library while Pooh Bear rode alone in the wheelchair. He repeated this going back to the car, back out at Grandma's, back in after Grandma's, and back out to speech therapy at Dell Children's Medical Center. After a strenuous speech session he allowed me to wheel him back to the car, but by the time we finished our 30 minute drive home, with the requisite animal cookies and ice water, he was ready to do it himself one last time and crawled over the pea gravel into the house. I showed him how to say "All by myself."

When John was first diagnosed, I knew it was possible that he could be a baby forever. Carrying him, speaking for him, feeding him, diapering and dressing him, and scheduling him has been an exhausting, four-year-long infancy. Last week I gave John a big boy haircut for the first time. Right now, he is watching the movie Cars with his seven-year-old sister and bugging her.

I think he might become a big boy.

Molasses cookies

Something unexpected has happened to John. In November, he tried out a voice-output communication device for three weeks in a limited way and he started talking. Not with the device. With his mouth.

To reduce any unmet expectations, I had taken a break from thinking that he would ever be able to speak intelligibly. The break started sometime over a year ago when, after several attempted discussions with a speech therapist about exactly what his difficulties were and how we should approach them, including detailed information provided by me, said therapist concluded, "You know, I'm beginning to think this is more than a simple speech delay." I had other things to work on after the hair I tore out healed, and so I took the break, well except for two other speech therapists, but really it was a break, and when the year was up we focused solely on voice-output augmentative communication.

Before Christmas, he was sick with a cold. He wouldn't eat and I was worried about where that would take him. I now know that eating at 50% capacity for three weeks with five strenuous therapy sessions on the last week, can land him in the hospital and I know what the lab values looked like. (Well, hypothetically, since we don't really know that not eating caused the crash.) I wasn't sure what eating at 30% capacity for ten days but still drinking well, with resting protocol, would do. (Note: since this episode we got labs and came up with a new formula for just these occasions.) He had a sore throat and I was letting him eat ice cream and whatever else I could get in.

John was sitting in his highchair scribbling with markers, a super-favorite new pastime, and I had just made dough for my grandma Lucy's amazing molasses cookies, rolled the balls in sugar, and baked them, all in front of him. He showed no interest. I took the tray out of the oven and set it far away from him on the table while I went to get the spatula. That is, I wanted to get the spatula, but I was stopped by a sudden storm of protest from John. "Uhhhhnnnn! Uhhhhnnnn!" Maybe there was something wrong with his marker. I tried to step away again and got the same thing. Frustrated, I considered ignoring him but I stopped and paid attention. With little patience, I said, "John, what is it?"

"Cook-ee!" He actually wanted one of those brown things. Then I remembered that I had made them once, months before and he had loved them. These cookies are very soluble in your mouth, and that is John's favorite thing. Chewing for him ranges between challenging and impossible. The cookies are not pale colored and lightly vanilla flavored, though, like everything else he likes, and I can't explain that part.

He ate three that night, a caloric miracle. I was thinking about how adding some vitamin drops would probably make the cookies superior to the liquid nutritional supplements out there but as I started on the question of how you would increase the protein I had to stop and search for a tin to mail the cookies.

The next night he was sitting on the floor in the kitchen doorway. He ate one or two cookies. I gave him another. I was working in the kitchen again. He started breaking the cookie into bite-sized pieces. After a few minutes I looked and the cookie was in tiny pieces and he was intensely fingering and working the chunks with a combination of the enjoyments of ripping paper and squeezing Play-Doh.

"John!"

He looked up.

"What are you doing?"

"Cook-ee!"

"Are you going to eat that cookie?"

"Uh."

"You're not going to eat it, are you? You're just goofing around!"

Pause.

"Goo - ih a - RAO!"

"Did you just say goofing around?"

"Goo - ih a - RAO!" (cute smile)

"Hey everybody, John just said goofing around! Come here! Listen to him!"

He must have said goofing around ten more times that night, and twenty more times each day that week. Many of the times were with that cute, attention-loving smile. Two weeks later when his new speech therapist asked what he did for the holidays, he looked down with a new, shyer smile and diligently said, "Goo - ih a - rao!"

I get worried about him, of course. I was kind of thinking that his not eating would lead to us spending a day or two in the hospital just before Christmas and I made a half-neat pile of our clean clothes that could be scooped up easily later, in case we were at the doctor's office and they said that thing, "Well, I'd like to admit him," that I now know they just say sometimes.

I worry, and worry, and then he does something like this, and he just shines past it all. He is so . . . shiny.

About four days after the cookie-mushing incident, he started eating again. I know this may be normal for his system, and I have the comfort of having read stories from other families about many types of not eating, half much more severe than this. I don't know what John's comfort is when he doesn't feel good enough to eat, but I suspect that when he has the energy, that it is - goofing around.