is at Hopeful Parents.
Please visit over there to read about one of John's many new accomplishments!
Monday, September 6, 2010
Thursday, August 5, 2010
Thursday, May 20, 2010
Saturday, May 2, 2009
What we did during the weeks of blogging silence
I waited for John's appointment with Dr. Sidewalk. Waited with a boy now talking from maroon gelcaps, and hoped that Dr. Sidewalk would come in and say that this all meant something significant (of course talking Is Significant and if I could only choose one, I would choose talking over a diagnosis). Instead a resident came in and said she supported John getting a power wheelchair and that she supported something called flexible homebound schooling. She even talked about being proactive and taking measures to prevent stool impaction. Oh, and she declined to examine John because she said she wanted to help conserve his energy. Energy conservation seems to be the primary management tool of mitochondrial and related disorders (I guessed that from looking around; no one stopped me on the corner and outright told me.)
While I was listening and smiling, I was really saying inside and still am: "A power chair? You mean those things that weigh 250 pounds and you have to get a special van for? Homebound schooling? Don't you know that school is to get them OUT of the house? Everyone says John is doing great; are you sure you are in the right room? [You know, all those people who say he is doing great and nothing else, the ones who I want to yell at.] Why do you have to come in here and say all those things that I know are totally APPROPRIATE for the first time like that? You trying to put me in shock?"
John's diagnosis hadn't changed one bit, but the underlying discussion had changed.
Dr. Sidewalk for his part said that we should expect that John will continue to just stop eating when ill, as he does, and just start again when better, as he does. At least, he said when I asked about that phenomenon, which has previously been discussed, "And that will be his pattern." He also said that he still hopes John will get to walking at some point.
Since the diagnosis of "possible mitochondrial disorder" hadn't changed, I had to look up and find out how they rate these things. I found something called the Modified Walker Criteria. I can't paste it here because I'm sitting in the woods with no internet access to grab it. There are other ways of rating and diagnosing mito, but this is one. It has three levels: definite, probable, and possible. Which level you are at depends somewhat on your symptoms, and mostly on what tests you have had and what the results were. Unfortunately, a great deal of the testing requires that you be put under general anesthesia and have a piece of your leg muscle cut out, and that they flash freeze it and send it to two different states and do a bunch of things with it. Unfortunately, this frozen type biopsy sometimes does not find what they are looking for, even when it is really there. And then there are the little mistakes, like when they don't freeze it right or it thaws before it gets to Buffalo or wherever they are sending it. So kids end up having gone under anyway (which can be really bad for them and cause regression which they may or may not come out of), their insurance paying a lot of money, and then they may wait years with an unclear diagnosis and end up having to do it again, sometimes more than once. I have a bad feeling about that. There are some people who have had a diagnosis accomplished with frozen biopsy, but it's only supposed to be 65-70% accurate and at this moment it doesn't justify the risk for us.
Over these weeks, I've tried to understand what we are to do, or not do. I've read about energy conservation and tried to wrap my mind around it. I've tried to read about other management, too, and that's unclear enough to not write about yet. And those darn full text articles that you have to pay for, keep getting in my path. And I read a little about prognosis. Guess what? Very unclear. I know two things. Make that three. One, prognosis for someone who starts out with birth defects and global delays, is different than for those who start out appearing totally normal (and those folks run the whole scale). Two, John is an exception to some rules because of the alternative therapies that have worked for him so far. Three, there are disorders, like some genetic syndromes, that affect respiratory chain function greatly, that aren't the standard "primary" mitochondrial disorder.
One doctor I have spoken with, not John's doctor, made this short comment: "You know, mitochondria are funny things...."
On May 15, we're making our first trip out of town to see a big city doctor. This is a doctor who does mitochondrial and neuro-metabolic stuff. I've heard mixed, but mostly glowing reviews, though there's no guarantee she will like our odd beliefs and lifestyle. I'm kind of hoping she will be more bold in her speech than we have yet experienced. I should plan to tell her, "I just want you to know something. If you say he's doing great with no other comment, I am going to scream." I hate to say it, but I have a little hope that she might help in some way. Other than waiting for that?....
I'm almost ready to take a deep breath.
Actually, I took one, and one wasn't enough. But it was nice.
I am getting a little braver. Even though I can get a rep for being argumentative, controlling, or even when advocating (this is a quote from one professional to another) "scary," I am actually shy and not the greatest communicator. I started a dialogue with John's pediatrician about diagnosis, prognosis, and management, on the day of my last blog entry. I hope we will move to a new level of care. We really need to get beyond spending 15 minutes talking about specialist visits that were inconclusive, and into the more important things like "Listen, after John rejected his dinner X hundred times, I just gave up, and I'm feeding him banana slices at dinner every night and I'm concerned that his weakness is greater than it needs to be due to poor nutrition."
Recently we had a bad time with a good ending. John had a long cold and hadn't been eating enough. I had it too and on a particular Friday afternoon I felt too sick to take him to the doctor. This happened to be the same Friday afternoon that he also started complaining of ear pain, then had two hours of difficulty exhaling (cured with simple rest) for the first time ever. The next morning he had one of his muscle tone collapses and vomited bile. I quickly packed a suitcase for the hospital and told my daughter that her birthday party would probably be cancelled. It was also raining and flooding. As a last minute thing, I called the homeopath. She agreed that we should go to the hospital but said, just give him this one thing before you go.
I gave it to him. He instantly sat up (SAT UP from a collapse) and said, "Ohhhh, I drank too much milk." Which wasn't really true because it was a teeny sip that had caused the vomiting to start, but it was very sweet. Then he said, "I want a bottle of MILK!" And he drank the whole thing and didn't vomit or fall over again. This was one of those moments that makes believers out of homeopathy doubters, but only when you experience it firsthand.
And thanks to Grandma and her friend, the birthday party was on anyway and John improved so much in 5 hours that he attended it (I had planned to either be at the hospital or in the bedroom with him with the door closed holding him). The sun came out and four little girls held our baby chicks and painted one of the 3000 gallon rainwater tanks.
I've never been in such a changeable situation. I'm 39 and I wonder if I will ever get used to the fact that the things that happen in life, are mostly unrehearsed.
While I was listening and smiling, I was really saying inside and still am: "A power chair? You mean those things that weigh 250 pounds and you have to get a special van for? Homebound schooling? Don't you know that school is to get them OUT of the house? Everyone says John is doing great; are you sure you are in the right room? [You know, all those people who say he is doing great and nothing else, the ones who I want to yell at.] Why do you have to come in here and say all those things that I know are totally APPROPRIATE for the first time like that? You trying to put me in shock?"
John's diagnosis hadn't changed one bit, but the underlying discussion had changed.
Dr. Sidewalk for his part said that we should expect that John will continue to just stop eating when ill, as he does, and just start again when better, as he does. At least, he said when I asked about that phenomenon, which has previously been discussed, "And that will be his pattern." He also said that he still hopes John will get to walking at some point.
Since the diagnosis of "possible mitochondrial disorder" hadn't changed, I had to look up and find out how they rate these things. I found something called the Modified Walker Criteria. I can't paste it here because I'm sitting in the woods with no internet access to grab it. There are other ways of rating and diagnosing mito, but this is one. It has three levels: definite, probable, and possible. Which level you are at depends somewhat on your symptoms, and mostly on what tests you have had and what the results were. Unfortunately, a great deal of the testing requires that you be put under general anesthesia and have a piece of your leg muscle cut out, and that they flash freeze it and send it to two different states and do a bunch of things with it. Unfortunately, this frozen type biopsy sometimes does not find what they are looking for, even when it is really there. And then there are the little mistakes, like when they don't freeze it right or it thaws before it gets to Buffalo or wherever they are sending it. So kids end up having gone under anyway (which can be really bad for them and cause regression which they may or may not come out of), their insurance paying a lot of money, and then they may wait years with an unclear diagnosis and end up having to do it again, sometimes more than once. I have a bad feeling about that. There are some people who have had a diagnosis accomplished with frozen biopsy, but it's only supposed to be 65-70% accurate and at this moment it doesn't justify the risk for us.
Over these weeks, I've tried to understand what we are to do, or not do. I've read about energy conservation and tried to wrap my mind around it. I've tried to read about other management, too, and that's unclear enough to not write about yet. And those darn full text articles that you have to pay for, keep getting in my path. And I read a little about prognosis. Guess what? Very unclear. I know two things. Make that three. One, prognosis for someone who starts out with birth defects and global delays, is different than for those who start out appearing totally normal (and those folks run the whole scale). Two, John is an exception to some rules because of the alternative therapies that have worked for him so far. Three, there are disorders, like some genetic syndromes, that affect respiratory chain function greatly, that aren't the standard "primary" mitochondrial disorder.
One doctor I have spoken with, not John's doctor, made this short comment: "You know, mitochondria are funny things...."
On May 15, we're making our first trip out of town to see a big city doctor. This is a doctor who does mitochondrial and neuro-metabolic stuff. I've heard mixed, but mostly glowing reviews, though there's no guarantee she will like our odd beliefs and lifestyle. I'm kind of hoping she will be more bold in her speech than we have yet experienced. I should plan to tell her, "I just want you to know something. If you say he's doing great with no other comment, I am going to scream." I hate to say it, but I have a little hope that she might help in some way. Other than waiting for that?....
I'm almost ready to take a deep breath.
Actually, I took one, and one wasn't enough. But it was nice.
I am getting a little braver. Even though I can get a rep for being argumentative, controlling, or even when advocating (this is a quote from one professional to another) "scary," I am actually shy and not the greatest communicator. I started a dialogue with John's pediatrician about diagnosis, prognosis, and management, on the day of my last blog entry. I hope we will move to a new level of care. We really need to get beyond spending 15 minutes talking about specialist visits that were inconclusive, and into the more important things like "Listen, after John rejected his dinner X hundred times, I just gave up, and I'm feeding him banana slices at dinner every night and I'm concerned that his weakness is greater than it needs to be due to poor nutrition."
Recently we had a bad time with a good ending. John had a long cold and hadn't been eating enough. I had it too and on a particular Friday afternoon I felt too sick to take him to the doctor. This happened to be the same Friday afternoon that he also started complaining of ear pain, then had two hours of difficulty exhaling (cured with simple rest) for the first time ever. The next morning he had one of his muscle tone collapses and vomited bile. I quickly packed a suitcase for the hospital and told my daughter that her birthday party would probably be cancelled. It was also raining and flooding. As a last minute thing, I called the homeopath. She agreed that we should go to the hospital but said, just give him this one thing before you go.
I gave it to him. He instantly sat up (SAT UP from a collapse) and said, "Ohhhh, I drank too much milk." Which wasn't really true because it was a teeny sip that had caused the vomiting to start, but it was very sweet. Then he said, "I want a bottle of MILK!" And he drank the whole thing and didn't vomit or fall over again. This was one of those moments that makes believers out of homeopathy doubters, but only when you experience it firsthand.
And thanks to Grandma and her friend, the birthday party was on anyway and John improved so much in 5 hours that he attended it (I had planned to either be at the hospital or in the bedroom with him with the door closed holding him). The sun came out and four little girls held our baby chicks and painted one of the 3000 gallon rainwater tanks.
I've never been in such a changeable situation. I'm 39 and I wonder if I will ever get used to the fact that the things that happen in life, are mostly unrehearsed.
Sunday, March 15, 2009
Cleaning Sister's room
Sometimes mothers blog about cleaning their houses. I'll admit to feeling perplexed and slightly jealous when I read these entries. We have lived in three houses since we started farming, none particularly tidy (except maybe the one we were borrowing and could only bring a few boxes' worth of possessions to). Though putting away our suitcases last month was a triumph, it didn't result in that room actually being clean for more than a day. I can't blame the special needs parenting, because farming and other things come into it too.
I have a grandma who makes it sound like cleaning your house is the most noble, enjoyable thing in the world. In her eighties she was still telling me how good she felt because she still scrubbed her kitchen floor on her knees every time (I do too, for the record). At her house, the dishes are always done. Mealtimes are the framework for the rest of the schedule. She knows everything that needs to be cleaned, organized, and erranded. She watched neighbor babies or children when needed for 60 years. All the kids around there would come and knock on her door for a cookie. And she seemed, as far as I could tell, absolutely proud and satisfied of her work in a way that I have never seen in someone without wrinkles. Most times when I talk to her by phone, I still hear something about her housekeeping and how it is going with her current health. I hold up her stories and sniff them, hoping that the essence will go into me and make a slight internal change. It does.
On Sunday, it was 80 degrees, and the kids had the most wonderful afternoon. John and Sister painted with tempera paint on the porch. They painted on fingerpainting paper and cardboard boxes. Sister earned two dollars for helping John with the paint, while I worked in the kitchen just off the porch. Do you know how long a little non-walking kid can occupy themselves painting a cardboard box and then lifting it on and off of a bench and studying it from every angle, including crawling up and down the front ramp between each viewing? I didn't either.
After painting, we put last year's wading pool at the bottom of the ramp. With duct tape, we made it useable one more time. Sister had the honor of holding the running hose (and thus the power to annoy and startle John in infinite ways). They spent a long time in the pool, and suddenly I realized that John had missed his resting period. It was so nice to see them absorbed in playing outside.
On Monday, John had a fever again, just a little one. I couldn't take him out, but he was still playing. We started to work on Sister's room. I told John that we would look for the red ball, an important ball from his hammer-ball toy that has never been lost until last week. John watched as I separated trash from toys, going through the room with two big bags. We rotated slowly around the perimeter of the room. Layers of papers, markers, crayons, plastic pieces from toy sets, and clothes had settled geologically onto every surface, somehow all held in their inertia by five flattened pieces of (!) bubble gum that I finally discovered on the wood floor. The bubble gum must have exercised an unintentionally-evil, downward force, causing it to be impossible to pick anything up in that room. When I got three of the lumps up, the spell lifted and the room almost looked like a room again.
We had to stop for the day before we reached the red 40 gallon bucket by the closet.
The next day, John's teacher was sick, and he still felt hot, so back into Sister's room we went with fresh bags. I took anything that was not trash but not easy to put away, and put it in a bag to hide and tackle on another day. The bucket was emptied and shooed outside, and we cleared the closet floor. Outgrown clothes were hid in another bag, for me to wash and give away on another sisterless fever day. I washed the closet floor and John played hiding-in-the-closet.
In about two more days, the room could have be really clean, with a trip for plastic containers and a long book and toy weeding. Instead, with another plan cancellation the next day, we moved on to the living room. I took the Santa, snowman, and nativity scene down. Because the nativity scene is fun to play with, the windowsill where it sat had turned into a surface to coat with other small toys. We came up with more places to look for the red ball, and in doing so put away John's toys. I scrubbed the fly spots off the fan pulls. I took all the little taped cutout toy pictures off the windows that Sister had put up to show Santa, and washed the window where she had written in window marker: "It is almost Christmas! My Christmas spirit is so merry and light!" and more words to Santa. The only thing on the windowsill that would stay was a ceramic pot with a small semi-succulent trailing plant that I received at the baby shower before Sister was born. When she was two or so, I had told the giver by email that the plant was still doing well and the pot hadn't yet been broken. She replied: That the plant and [sister] are doing well is a testament to your loving care of them both. I was surprised. Almost six years later, I remember but don't know if I understand those words.
When Sister came home from school one of those days, she not only found her clean room, but a package from the mail with a few new clothes that actually fit. I turned John over to his dad and invited her to the coffee shop. She must have either been relieved that she was finally getting the right amount of attention, or wondered if her real mom had been abducted by aliens and replaced. We found that the coffee shop was out of business, probably because of the economy. We went to the downtown of our little farm town to find an alternative. The bookstore and ice cream shop had also closed, so we went to a beer-heavy corner grocery to buy a packaged ice cream and we went to the park. Sister played on all the equipment and even came when I told her it was time to go.
Everything was cancelled for three days, and I temporarily pretended to be a normal mother, to both kids. No therapies. No paperwork day. I just cleaned the house, changed John's diapers, fed him, and cooked dinners. I only made four or five bureaucratic phone calls the whole time.
It's funny, because on Sunday, while the kids were still at church and I was home, I called a friend who is a mix of angel and a firm procedure-and-paper support. Not only does she say a lot of funny stuff, she's nice enough to laugh at many of the stories I tell too. I said: "I need someone's permission to discharge John from OT." I explained the situation and why it would benefit our family to take John out of one more therapy, just for a few months. This would mean we would be down to three therapies per week, from six last fall. She listened and gave her blessing. I told her I was almost ready to consider the possibility that there was a way to get caught up with my life constructively, instead of being enraged and underwater about not being caught up. It's funny, because I thought going down to three therapies a week was going to be so good, but instead, the very next morning, I got a taste of what it would be to have no therapies. Don't get me wrong, I find therapy and development fascinating, and I was vigilant in trying to find the right therapists for John--but I'm sorry to say how much I loved it. I'm so tired of fucking fixing everything.
I'm curious what will happen with this trend. Don't ask how much more there is to do around here. It is, or seems, about Mount Denali sized. Comparing supposed obligations to supposed resources, it seems like threading a mountain through the eye of a needle. Lots of people climb Denali and love it. Some don't make it. Would I climb that mountain voluntarily? No, absolutely not. Would I do it if I was set in the middle of it and there was no going down?
I think one of these days something is going to click, and the mountain is going to change. After all, first you see a mountain. Then you see there is no mountain. Then you see it really is just a mountain.
I have a grandma who makes it sound like cleaning your house is the most noble, enjoyable thing in the world. In her eighties she was still telling me how good she felt because she still scrubbed her kitchen floor on her knees every time (I do too, for the record). At her house, the dishes are always done. Mealtimes are the framework for the rest of the schedule. She knows everything that needs to be cleaned, organized, and erranded. She watched neighbor babies or children when needed for 60 years. All the kids around there would come and knock on her door for a cookie. And she seemed, as far as I could tell, absolutely proud and satisfied of her work in a way that I have never seen in someone without wrinkles. Most times when I talk to her by phone, I still hear something about her housekeeping and how it is going with her current health. I hold up her stories and sniff them, hoping that the essence will go into me and make a slight internal change. It does.
On Sunday, it was 80 degrees, and the kids had the most wonderful afternoon. John and Sister painted with tempera paint on the porch. They painted on fingerpainting paper and cardboard boxes. Sister earned two dollars for helping John with the paint, while I worked in the kitchen just off the porch. Do you know how long a little non-walking kid can occupy themselves painting a cardboard box and then lifting it on and off of a bench and studying it from every angle, including crawling up and down the front ramp between each viewing? I didn't either.
After painting, we put last year's wading pool at the bottom of the ramp. With duct tape, we made it useable one more time. Sister had the honor of holding the running hose (and thus the power to annoy and startle John in infinite ways). They spent a long time in the pool, and suddenly I realized that John had missed his resting period. It was so nice to see them absorbed in playing outside.
On Monday, John had a fever again, just a little one. I couldn't take him out, but he was still playing. We started to work on Sister's room. I told John that we would look for the red ball, an important ball from his hammer-ball toy that has never been lost until last week. John watched as I separated trash from toys, going through the room with two big bags. We rotated slowly around the perimeter of the room. Layers of papers, markers, crayons, plastic pieces from toy sets, and clothes had settled geologically onto every surface, somehow all held in their inertia by five flattened pieces of (!) bubble gum that I finally discovered on the wood floor. The bubble gum must have exercised an unintentionally-evil, downward force, causing it to be impossible to pick anything up in that room. When I got three of the lumps up, the spell lifted and the room almost looked like a room again.
We had to stop for the day before we reached the red 40 gallon bucket by the closet.
The next day, John's teacher was sick, and he still felt hot, so back into Sister's room we went with fresh bags. I took anything that was not trash but not easy to put away, and put it in a bag to hide and tackle on another day. The bucket was emptied and shooed outside, and we cleared the closet floor. Outgrown clothes were hid in another bag, for me to wash and give away on another sisterless fever day. I washed the closet floor and John played hiding-in-the-closet.
In about two more days, the room could have be really clean, with a trip for plastic containers and a long book and toy weeding. Instead, with another plan cancellation the next day, we moved on to the living room. I took the Santa, snowman, and nativity scene down. Because the nativity scene is fun to play with, the windowsill where it sat had turned into a surface to coat with other small toys. We came up with more places to look for the red ball, and in doing so put away John's toys. I scrubbed the fly spots off the fan pulls. I took all the little taped cutout toy pictures off the windows that Sister had put up to show Santa, and washed the window where she had written in window marker: "It is almost Christmas! My Christmas spirit is so merry and light!" and more words to Santa. The only thing on the windowsill that would stay was a ceramic pot with a small semi-succulent trailing plant that I received at the baby shower before Sister was born. When she was two or so, I had told the giver by email that the plant was still doing well and the pot hadn't yet been broken. She replied: That the plant and [sister] are doing well is a testament to your loving care of them both. I was surprised. Almost six years later, I remember but don't know if I understand those words.
When Sister came home from school one of those days, she not only found her clean room, but a package from the mail with a few new clothes that actually fit. I turned John over to his dad and invited her to the coffee shop. She must have either been relieved that she was finally getting the right amount of attention, or wondered if her real mom had been abducted by aliens and replaced. We found that the coffee shop was out of business, probably because of the economy. We went to the downtown of our little farm town to find an alternative. The bookstore and ice cream shop had also closed, so we went to a beer-heavy corner grocery to buy a packaged ice cream and we went to the park. Sister played on all the equipment and even came when I told her it was time to go.
Everything was cancelled for three days, and I temporarily pretended to be a normal mother, to both kids. No therapies. No paperwork day. I just cleaned the house, changed John's diapers, fed him, and cooked dinners. I only made four or five bureaucratic phone calls the whole time.
It's funny, because on Sunday, while the kids were still at church and I was home, I called a friend who is a mix of angel and a firm procedure-and-paper support. Not only does she say a lot of funny stuff, she's nice enough to laugh at many of the stories I tell too. I said: "I need someone's permission to discharge John from OT." I explained the situation and why it would benefit our family to take John out of one more therapy, just for a few months. This would mean we would be down to three therapies per week, from six last fall. She listened and gave her blessing. I told her I was almost ready to consider the possibility that there was a way to get caught up with my life constructively, instead of being enraged and underwater about not being caught up. It's funny, because I thought going down to three therapies a week was going to be so good, but instead, the very next morning, I got a taste of what it would be to have no therapies. Don't get me wrong, I find therapy and development fascinating, and I was vigilant in trying to find the right therapists for John--but I'm sorry to say how much I loved it. I'm so tired of fucking fixing everything.
I'm curious what will happen with this trend. Don't ask how much more there is to do around here. It is, or seems, about Mount Denali sized. Comparing supposed obligations to supposed resources, it seems like threading a mountain through the eye of a needle. Lots of people climb Denali and love it. Some don't make it. Would I climb that mountain voluntarily? No, absolutely not. Would I do it if I was set in the middle of it and there was no going down?
I think one of these days something is going to click, and the mountain is going to change. After all, first you see a mountain. Then you see there is no mountain. Then you see it really is just a mountain.
Sunday, March 8, 2009
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 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.
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.
Friday, March 6, 2009
Reading too much?
How do you know when you have been reading too much "special needs" material?
1. I was looking through the mail and saw a solicitation from an environmental organization:
Join now and get your FREE BIPOLAR TEEN!
2. This is what I thought I read in review of a book of collected literature by parents of special needs children, so not everyday advice, but literary-type stuff:
"It is a must buy book for anyone who [...] transports young people with disabilities."
I can only see a minority of bus drivers enjoying this type of book.
3. What I first saw in a professional-looking bio on a parent/community website:
"She enjoys watching people eat desserts."
Is that an unusual hobby, or am I out of style?
==================================================
The actual words
1. Free polar bear tote
2. Supports, not transports.
3. She enjoys people-watching and eating desserts.
===============================================
Only the first misread was due to information overload; the other errors were caused by plain old eyestrain.
If you don't find this sort of thing funny, then you haven't spent five minutes at 7:00 each morning for six weeks, with tears streaming down your face, trying not to make a sound so as not to wake up your hosts, while you are laughing so hard reading this book by Richard Lederer.
1. I was looking through the mail and saw a solicitation from an environmental organization:
Join now and get your FREE BIPOLAR TEEN!
2. This is what I thought I read in review of a book of collected literature by parents of special needs children, so not everyday advice, but literary-type stuff:
"It is a must buy book for anyone who [...] transports young people with disabilities."
I can only see a minority of bus drivers enjoying this type of book.
3. What I first saw in a professional-looking bio on a parent/community website:
"She enjoys watching people eat desserts."
Is that an unusual hobby, or am I out of style?
==================================================
The actual words
1. Free polar bear tote
2. Supports, not transports.
3. She enjoys people-watching and eating desserts.
===============================================
Only the first misread was due to information overload; the other errors were caused by plain old eyestrain.
If you don't find this sort of thing funny, then you haven't spent five minutes at 7:00 each morning for six weeks, with tears streaming down your face, trying not to make a sound so as not to wake up your hosts, while you are laughing so hard reading this book by Richard Lederer.
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