Well, I'm pretty sure Kyle is going to miss this dog cage more than he'll miss Lilly! We gave her away a very nice family on Saturday. Life is crazy enough without a pet.
Tuesday, June 19, 2007
Caged
Well, I'm pretty sure Kyle is going to miss this dog cage more than he'll miss Lilly! We gave her away a very nice family on Saturday. Life is crazy enough without a pet.
Tuesday, June 12, 2007
Update on the GFCF diet
Jana and I have felt that the GFCF diet has done Kyle absolutely no good, as well as the MB12 shots. The shots make Kyle SUPER hyper for a day and a half. He can't even focus on anything for a minute....babbles like a monkey and runs around like a chicken with his head cut off. It also takes him an hour and a half to fall asleep at night. And naps? Forget it! So, the MB12 shots are out. Can't even talk me back into it. No way, no how. We are experimenting with the GFCF diet. I've analyzed behavior patterns and stool for the last three days. Today, I removed the "CF" portion of the diet, and gave him milk, etc. Now, I will watch his behavior for the next few days and see if anything changes. If I see a major change in behavior, attitude, and stool, he will become casein free again. Then, in another two months, I will remove the "GF" and give him gluten. Same experiment there. I'm predicting nothing will change over the next few days, although it's possible he will get loose stools. So I'm trying to limit him to only milk to avoid too much dairy after being free for two months.
--
~Nate.
--
~Nate.
Update on Kyle
Well, we've all had quite a busy week. Between this and that, we don't have time for that. :) Kyle had an appointment at the Child Developmental Center last Friday. That was awesome...and the team he'll be working with seems very professional and competent. He'll be receiving 12 hours of therapy per week, or three hours per day for four days a week. Personally, between that and speech/sensory integration therapies at Kadlec, that's enough for me. I couldn't handle any more...and neither could Kyle. We go to the park to play everyday after therapy because he and Isaac LOVES to play outside! Plus, it gives me a great chance to play with Kyle one-on-one. Isaac runs off and finds another kid to play with..he's very social.
My feelings about speech therapy at Kadlec are on a mediocre level. They seem like a big "machine," processing kids through all day to rack up the bank account. His therapist is VERY good at what she does, but only sees him for 30 min. twice a week. That is barely enough time for me to learn about what strategies I can use at home. Audrey (speech therapist) is currently using PECS (Picture Exchange Communication System) with Kyle. That's a fancy word for Kyle handing us a picture of an object he wants. In order to train him, we force his hand to pick up the picture when he reaches for the object. Then he puts the picture in our hand and we say "I want ball," or whatever it is he wants. I expressed some concern to her about him replacing speech with PECS, because as kids get good at PECS they form sentences with pictures, but she assured me it actually helps them begin speaking. I trust her...as she's seen MANY kids come through in the last 20 years, including Vicki's son Justin, who's a well-spoken teen now. So, we'll use PECS....hopefully it will work well with what the Child Dev. Ctr. is using, because they don't use PECS. One reservation I have about it, is that Kyle gets very frustrated and cries and screams persistently in the therapy room.....
As a parent travelling this journey called autism, I've discovered that I tend to be a bit conservative when it comes to "treating" my son. What I actually want is to help him. I want to help him discover who he is. So I'm not in the camp of parents who believe my son is diseased and sick (although I have stated that before) and needs to be FIXED NOW! If I believed that, I'd poke him, prod him, make him scream, shove everything known to man down his throat, drag him to 60 hours per week of excruciatingly painful therapy, and fly him to Denver, Texas, and Mississippi too. But I'm not that dad. But I am not giving up either. I don't know why my son has "autistic" like tendencies. Nobody does. That's why everybody's arguing about it. I am not the dad who says I want to just "accept" him the way he is and do nothing for him. I DO want Kyle to speak. I DO want Kyle to be able to express himself. I think God does too. That's why he gave us a voice and a language, to speak to one another. So I am not sitting back waiting for him to just speak, although he could very well do that on his own. I'm doing things to help him. I don't believe in forcing these kids. That's why PECS is about as far as I would go. I only do it because I see instant results, and Kyle catches on very quickly.
I also want my son to include others in his own little world. I believe this social aspect of life is God inspired as well. God intends for us to socialize and contribute to society. So, I believe my son will! And, I'm going to help him by relating to him. Eventually, he'll relate back and share that relationship with others. So in short, I'm taking a little here, a little there, and mostly subscribing to the relational based therapies for "treating" my son's autism, although it's not treating at all. Maybe he'll be slower developing than other kids. WHO CARES!?! Why do we put so much emphasis in society on hitting the mark? You graduated from high school, you graduted from college, landed your first job, you got married, you had a kid, you got that raise....etc. etc. What is wrong when a child decides he won't talk until he is 8 years old? And then asks a million and one questions, as if he was trying to catch up for lost time. Albert Einstein did it...Richard Feynman, Edward Teller did it....all nuclear physicists. Will my son be a nuclear physicist? Probably not...but he will if he wants to. Does he seem like a genius to me at this point? No. He doesn't display any EXTRA-ordinary qualities at this point...except for his almost obsessive desire to color paper and draw on the fridge. When he sees the crayons, it's over folks. That's what he's doing for the next hour or two. Most of the time he refuses to color on a coloring book page...he needs a blank canvas. I like that. He thinks out of the box.
Anyways....that's my thoughts for this week. I know there will be people who disagree....there always are. Oh well. I'm doing what I feel is Biblical based. I've thought and prayed about this for a LONG LONG time. Thanks for reading..
--
~Kyle's Daddy.
My feelings about speech therapy at Kadlec are on a mediocre level. They seem like a big "machine," processing kids through all day to rack up the bank account. His therapist is VERY good at what she does, but only sees him for 30 min. twice a week. That is barely enough time for me to learn about what strategies I can use at home. Audrey (speech therapist) is currently using PECS (Picture Exchange Communication System) with Kyle. That's a fancy word for Kyle handing us a picture of an object he wants. In order to train him, we force his hand to pick up the picture when he reaches for the object. Then he puts the picture in our hand and we say "I want ball," or whatever it is he wants. I expressed some concern to her about him replacing speech with PECS, because as kids get good at PECS they form sentences with pictures, but she assured me it actually helps them begin speaking. I trust her...as she's seen MANY kids come through in the last 20 years, including Vicki's son Justin, who's a well-spoken teen now. So, we'll use PECS....hopefully it will work well with what the Child Dev. Ctr. is using, because they don't use PECS. One reservation I have about it, is that Kyle gets very frustrated and cries and screams persistently in the therapy room.....
As a parent travelling this journey called autism, I've discovered that I tend to be a bit conservative when it comes to "treating" my son. What I actually want is to help him. I want to help him discover who he is. So I'm not in the camp of parents who believe my son is diseased and sick (although I have stated that before) and needs to be FIXED NOW! If I believed that, I'd poke him, prod him, make him scream, shove everything known to man down his throat, drag him to 60 hours per week of excruciatingly painful therapy, and fly him to Denver, Texas, and Mississippi too. But I'm not that dad. But I am not giving up either. I don't know why my son has "autistic" like tendencies. Nobody does. That's why everybody's arguing about it. I am not the dad who says I want to just "accept" him the way he is and do nothing for him. I DO want Kyle to speak. I DO want Kyle to be able to express himself. I think God does too. That's why he gave us a voice and a language, to speak to one another. So I am not sitting back waiting for him to just speak, although he could very well do that on his own. I'm doing things to help him. I don't believe in forcing these kids. That's why PECS is about as far as I would go. I only do it because I see instant results, and Kyle catches on very quickly.
I also want my son to include others in his own little world. I believe this social aspect of life is God inspired as well. God intends for us to socialize and contribute to society. So, I believe my son will! And, I'm going to help him by relating to him. Eventually, he'll relate back and share that relationship with others. So in short, I'm taking a little here, a little there, and mostly subscribing to the relational based therapies for "treating" my son's autism, although it's not treating at all. Maybe he'll be slower developing than other kids. WHO CARES!?! Why do we put so much emphasis in society on hitting the mark? You graduated from high school, you graduted from college, landed your first job, you got married, you had a kid, you got that raise....etc. etc. What is wrong when a child decides he won't talk until he is 8 years old? And then asks a million and one questions, as if he was trying to catch up for lost time. Albert Einstein did it...Richard Feynman, Edward Teller did it....all nuclear physicists. Will my son be a nuclear physicist? Probably not...but he will if he wants to. Does he seem like a genius to me at this point? No. He doesn't display any EXTRA-ordinary qualities at this point...except for his almost obsessive desire to color paper and draw on the fridge. When he sees the crayons, it's over folks. That's what he's doing for the next hour or two. Most of the time he refuses to color on a coloring book page...he needs a blank canvas. I like that. He thinks out of the box.
Anyways....that's my thoughts for this week. I know there will be people who disagree....there always are. Oh well. I'm doing what I feel is Biblical based. I've thought and prayed about this for a LONG LONG time. Thanks for reading..
--
~Kyle's Daddy.
Wednesday, June 6, 2007
Monday, June 4, 2007
Vaccine Test Case Reaches Federal Court
I'M REALLY EXCITED TO LISTEN IN ON THIS TRIAL IN A WEEK. THIS IS THE MOST ORGANIZED LEGAL HEARING LOOKING INTO THE POSSIBILITY OF A VACCINE/AUTISM CONNECTION. IT WILL BE INTERESTING TO SEE WHAT EVIDENCE IS BROUGHT FORWARD BY BOTH SIDES. I THINK IT WILL BE A TOUGH BATTLE FOR THE 4800 PARENTS, SINCE THE DRUG COMPANIES HAVE SO MUCH POWER AND INFLUENCE. IT WILL DEFINITELY BE INTERESTING THOUGH.
Vaccine Test Case Reaches Federal Court
For years, parents of autistic children have claimed mercury in vaccines is
at fault. Now it’s time to prove it.
By Tony Mauro for Legal Times. http://tinyurl.com/3ab2dr
The family stories are remarkably, painfully, similar.
They begin begin with toddlers developing well, and happily. Then they
are taken to the doctor’s office for routine vaccines which, in the early
1990s, often were bundled together.
A week after the shots, the devastation begins: loss of speech and eye
contact, high fever, constant pain, screaming, bowel problems, no sleep. The
children no longer respond to their names; later, they are diagnosed with
autism or related disorders.
“Words alone cannot explain the trauma of watching your only child’s
health deteriorate to such a degree before your eyes,” Theresa Cedillo of
Arizona writes in an e-mail to Legal Times.
On June 11, the case of Michelle Cedillo, Theresa’s daughter, goes
before an extraordinary tribunal assembled by the U.S. Court of Federal
Claims. Its goal is to determine, for the first time in a judicial
proceeding, whether the combination of certain vaccines and thimerosal, a
mercury-based vaccine preservative, can cause autism — a set of disorders
that is gaining attention as more and more children are diagnosed, as many
as one in 150 children born in the United States. The government has long
denied such a link exists.
In her first comments to the media since her case began in 1998,
Theresa Cedillo tells Legal Times, “The profound downward change in
Michelle’s health began seven days following the MMR [measles, mumps, and
rubella vaccine]."
Of her daughter, now 12, she adds, “Her childhood has passed right
before our eyes spent in hospitals and doctors’ offices, not in parks and
with little friends. The trauma of the sheer human suffering she endures
every day is beyond explanation and understanding, filling us with
overwhelming anguish."
Michelle, her mother says, “will require a very highly skilled and
involved level of daily care as she continues to age . . . It is our hope
that she can gain some type of communication skills in the future."
Cedillo v. Secretary of Health and Human Services was picked as a test
case from more than 4,800 autism claims that have been filed with the
little-known court, which sits anonymously overlooking Lafayette Square near
the White House. The outcome of the case, the court hopes, will guide the
disposition of other claims and prevent the need for repetitive discovery
and expert witness testimony.
The determination also could shake — or bolster — public confidence in
the vaccine system and affect autism litigation worldwide.
During three weeks of testimony, the hotly contested issue of
causation will be advanced and picked apart by expert witnesses. A sign of
the emotions infused into the case: The court sealed the names of the
witnesses, for fear they would be harassed.
The trial before three special masters will take place in a 400-seat
courtroom that may be filled with parents and their lawyers, as well as
lawyers and lobbyists for the pharmaceutical industry, which has a huge but
indirect stake in the case. Special arrangements have been made to enable
out-of-town parents to listen to the trial by phone, and transcripts and
audio of the trial will be made available online.
“There’s never been another case like this,” says Kevin Conway of
Boston’s Conway, Homer & Chin-Caplan, one of Cedillo’s lawyers.
Vaccine Test Case Reaches Federal Court
For years, parents of autistic children have claimed mercury in vaccines is
at fault. Now it’s time to prove it.
By Tony Mauro for Legal Times. http://tinyurl.com/3ab2dr
The family stories are remarkably, painfully, similar.
They begin begin with toddlers developing well, and happily. Then they
are taken to the doctor’s office for routine vaccines which, in the early
1990s, often were bundled together.
A week after the shots, the devastation begins: loss of speech and eye
contact, high fever, constant pain, screaming, bowel problems, no sleep. The
children no longer respond to their names; later, they are diagnosed with
autism or related disorders.
“Words alone cannot explain the trauma of watching your only child’s
health deteriorate to such a degree before your eyes,” Theresa Cedillo of
Arizona writes in an e-mail to Legal Times.
On June 11, the case of Michelle Cedillo, Theresa’s daughter, goes
before an extraordinary tribunal assembled by the U.S. Court of Federal
Claims. Its goal is to determine, for the first time in a judicial
proceeding, whether the combination of certain vaccines and thimerosal, a
mercury-based vaccine preservative, can cause autism — a set of disorders
that is gaining attention as more and more children are diagnosed, as many
as one in 150 children born in the United States. The government has long
denied such a link exists.
In her first comments to the media since her case began in 1998,
Theresa Cedillo tells Legal Times, “The profound downward change in
Michelle’s health began seven days following the MMR [measles, mumps, and
rubella vaccine]."
Of her daughter, now 12, she adds, “Her childhood has passed right
before our eyes spent in hospitals and doctors’ offices, not in parks and
with little friends. The trauma of the sheer human suffering she endures
every day is beyond explanation and understanding, filling us with
overwhelming anguish."
Michelle, her mother says, “will require a very highly skilled and
involved level of daily care as she continues to age . . . It is our hope
that she can gain some type of communication skills in the future."
Cedillo v. Secretary of Health and Human Services was picked as a test
case from more than 4,800 autism claims that have been filed with the
little-known court, which sits anonymously overlooking Lafayette Square near
the White House. The outcome of the case, the court hopes, will guide the
disposition of other claims and prevent the need for repetitive discovery
and expert witness testimony.
The determination also could shake — or bolster — public confidence in
the vaccine system and affect autism litigation worldwide.
During three weeks of testimony, the hotly contested issue of
causation will be advanced and picked apart by expert witnesses. A sign of
the emotions infused into the case: The court sealed the names of the
witnesses, for fear they would be harassed.
The trial before three special masters will take place in a 400-seat
courtroom that may be filled with parents and their lawyers, as well as
lawyers and lobbyists for the pharmaceutical industry, which has a huge but
indirect stake in the case. Special arrangements have been made to enable
out-of-town parents to listen to the trial by phone, and transcripts and
audio of the trial will be made available online.
“There’s never been another case like this,” says Kevin Conway of
Boston’s Conway, Homer & Chin-Caplan, one of Cedillo’s lawyers.
Sunday, June 3, 2007
Kyle, Week of May 27th
This has been a really tough week. This battle called autism seems to be a perpetual roller coaster of emotion. Things change day by day. One day we're all doing great, the next day is a nightmare. One day Kyle is eating everything, the next day nothing. We're being heavily tested. I never thought life would be this hard. I never thought so much would weigh on my shoulders. Maybe we shouldn't bear the burden. Maybe we should surrender it to God. That would be wise....but it's not easy. He's my baby. He's my son. He's a life held in my care. I have a responsibility....to succeed...to win...to overcome...to triumph evil.....to help him fight his battle....this is war.....Kyle vs. Autism. Most kids see it that way you know.....They fight....they win battles.....they fight the war....They hate what they don't understand.....They WANT to talk.....but they can't.....they WANT to look at you....but they can't....
I cry when I think of my son, who once played with his big brother, but for the most part no longer acknowledges he exists. This week I want more than anything for him to have a friend.....but that might not happen for a while. Hope......I hope......Jesus, you are my hope. You have to be. Only YOU can cure my son. Nothing else works.
I Love you Kyle. I hope you can actually understand that someday.......I hope we can read this together and laugh someday....laugh with joy.....laugh with peace and understanding....
High school graduations were this week. It got me thinking....I want to walk my son down the isle of his own graduation......I want to hold him in the sky and proclaim HE DID IT!!!!!! HALLELUJAH! I dream for that day....
There's nothing wrong with you Kyle....You are perfect. You are just sick........you will get better...other kids have, you will too. Just have FAITH.
You are so happy, and I'm so thankful for it. Your life is filled with joy. You find joy in the simplest of things. I thank God every day that he gave me such a happy little boy.
Matthew 14:36 and begged Him that they might only touch the hem of His garment. And as many as touched it were made perfectly well.
Job 4:3-6
Surely you have instructed many,
And you have strengthened weak hands.
4 Your words have upheld him who was stumbling,
And you have strengthened the feeble knees;
5 But now it comes upon you, and you are weary;
It touches you, and you are troubled.
6 Is not your reverence your confidence?
And the integrity of your ways your hope?
--
~Nate.
Sunday, May 27, 2007
Kyle's Progress This Week
Hi Everyone!
First of all, I would like to say CONGRATULATIONS TO MY LITTLE SISTER NATALIE for being accepted into her architecture program at WSU. She has worked very hard for two years to get her grades up, after being denied admission once, to nearly 4.0 avg to be accepted. WSU's program is the toughest in the state to get into because of its reputation and the limited number of slots. So GOOD JOB NATALIE!!
Kyle's week has been pretty good. He's practically made a 100% turnaround on his diet, thanks to the tenacity of his mother. She just won't accept his 'no' for an answer. She will sit in front of him with a cold bite of mashed potatoes for an hour, shoving it in front of his mouth, until he finally decides he'll eat it. I, personally dont have the patience for it...so I'm thankful Jana does. We bought a bunch of Gerber pureed vegetables, and he will eat those better than he will eat the vegetables in their original form. So, we're thankful he's eating SOMETHING green. I have made some pretty good meals this week, offering Kyle no excuse not to eat. Although stubborn as usual, but with his mothers persistence, Kyle will eat almost all of my GFCF meals.
Jana has started Kyle on his Methyl B12 injections this week. Her first shot was a "miss" and produced a little bubble under the skin, which most likely absorbed over night. But her second shot was a flying success. Kyle didn't even cry! The side affects appear to be mild, so we are thankful. We've heard of some crazy side affects to these injections. I would describe Kyle's behavior to be not hyperactive, but more like over active, and constantly busy. He walks around more, babbles more, jumps more, plays more....I suppose I consider hyperactive to be out of control....of which he is not.
I have to get ready for church!
--
~Kyle's Daddy.
~Kyle's Daddy.
What a Beautiful Story
Adopting Disabled Child Brings Callous Reaction: 'Why?'
"Why would anyone adopt a badly abused, autistic 6-year-old from foster
care?"
By Ralph James Savarese. http://tinyurl.com/34xtn7
So my wife and I were asked at the outset of our
adoption-as-a-first-resort adventure. It was a reasonable question in this
age of narrow self-concern - far more reasonable, or at least more
reasonably put, than many of the other questions we fielded.
For example, "Why don't you have your own children?" a wealthy
relative inquired, as if natural family-making were a kind of gated
community it was best never to abandon. "You two have such good genes. Why
waste them?"
A colleague at work confronted me in the mailroom with this memorable
gem: "Have you tried in vitro?" She feared that we hadn't availed ourselves
of the many wondrous technologies that rescue infertile couples. "Wouldn't
that be better than adopting a child with a disability?"
"We're not infertile," I barked. "We have a relationship with the
boy."
My wife, an autism expert, had offered his mother services, but as the
woman found it increasingly difficult to care for her son and then dropped
out of the picture altogether, we had started spending time with him. His
first communicative act with language, at age 3 - the sign for "more" - we
had taught him while tickling his belly.
He later made that sign in the emergency room of a hospital where he
was brought after being beaten in foster care. Upon seeing us - we had been
called in to try to calm him - he stopped in his tracks, paused and demanded
obsessively to be tickled. I remember searching on his chest for unbruised
patches among the purple, blue and black. He was that frantic in his quest
for the familiar and, dare I say, for love.
To this day, I can't believe how callous people were - the strange
anxiety that adopting a child with a disability provoked. And the anxiety
just kept coming. "Healthy white infants must be tough to get," a neighbor
commented. We were appalled by the idea that we'd do anything to avoid
adopting, say, a black child or a Latino one.
As offensive was the assumption that we must be devout Christians:
hyperbolic, designated do-gooders with a joint eye firmly on some final
prize. "God's reserving a special place for you," we heard on more than one
occasion. Adam Pertman, in his otherwise excellent book, Adoption Nation,
reproduces this logic exactly when he speaks of "children so challenging
that only the most saintly among us would think of tackling their behavioral
and physical problems."
Despite the stigma attached to "special-needs children," people do
adopt these kids. And yet, many more Americans spend gobs of money on
fertility treatments or travel to foreign countries to find their perfect
little bundles.
I'm haunted by something my son wrote after we taught him how to read
and type on a computer: "I want you to be proud of me. I dream of that
because in foster care I had no one." How many kids lie in bed at night and
think something similar?
The physical and behavioral problems have been significant, at times
even crushing. The last eight years have been devoted almost exclusively to
my son's welfare: literacy training, occupational therapy,
relationship-building, counseling for post-traumatic stress. But what
strides he has made.
The boy who was still in diapers and said to be retarded when he came
to live with us is now a straight-A student at our local middle school. He
is rewriting the common scripts of autism and "attachment disorder." These
are hopeless scripts, unforgiving scripts in which the child can't give
back.
My son does, and others can as well. Recently, in response to my hip
replacement, he typed on his computer, "I'm nervous because Dad has not
brought me braces" - his word for crutches. I was just home from the
hospital - wobbly, a bit depressed, in pain. To my question, "Why do you
need crutches?" he responded endearingly, "You know how I like to be just
like you." My son was trying to make me feel better, taking on my
impairment, limping with me.
Ralph James Savarese is the author of the new book "Reasonable People:
A Memoir of Autism & Adoption."
--
~Nate.
"Why would anyone adopt a badly abused, autistic 6-year-old from foster
care?"
By Ralph James Savarese. http://tinyurl.com/34xtn7
So my wife and I were asked at the outset of our
adoption-as-a-first-resort adventure. It was a reasonable question in this
age of narrow self-concern - far more reasonable, or at least more
reasonably put, than many of the other questions we fielded.
For example, "Why don't you have your own children?" a wealthy
relative inquired, as if natural family-making were a kind of gated
community it was best never to abandon. "You two have such good genes. Why
waste them?"
A colleague at work confronted me in the mailroom with this memorable
gem: "Have you tried in vitro?" She feared that we hadn't availed ourselves
of the many wondrous technologies that rescue infertile couples. "Wouldn't
that be better than adopting a child with a disability?"
"We're not infertile," I barked. "We have a relationship with the
boy."
My wife, an autism expert, had offered his mother services, but as the
woman found it increasingly difficult to care for her son and then dropped
out of the picture altogether, we had started spending time with him. His
first communicative act with language, at age 3 - the sign for "more" - we
had taught him while tickling his belly.
He later made that sign in the emergency room of a hospital where he
was brought after being beaten in foster care. Upon seeing us - we had been
called in to try to calm him - he stopped in his tracks, paused and demanded
obsessively to be tickled. I remember searching on his chest for unbruised
patches among the purple, blue and black. He was that frantic in his quest
for the familiar and, dare I say, for love.
To this day, I can't believe how callous people were - the strange
anxiety that adopting a child with a disability provoked. And the anxiety
just kept coming. "Healthy white infants must be tough to get," a neighbor
commented. We were appalled by the idea that we'd do anything to avoid
adopting, say, a black child or a Latino one.
As offensive was the assumption that we must be devout Christians:
hyperbolic, designated do-gooders with a joint eye firmly on some final
prize. "God's reserving a special place for you," we heard on more than one
occasion. Adam Pertman, in his otherwise excellent book, Adoption Nation,
reproduces this logic exactly when he speaks of "children so challenging
that only the most saintly among us would think of tackling their behavioral
and physical problems."
Despite the stigma attached to "special-needs children," people do
adopt these kids. And yet, many more Americans spend gobs of money on
fertility treatments or travel to foreign countries to find their perfect
little bundles.
I'm haunted by something my son wrote after we taught him how to read
and type on a computer: "I want you to be proud of me. I dream of that
because in foster care I had no one." How many kids lie in bed at night and
think something similar?
The physical and behavioral problems have been significant, at times
even crushing. The last eight years have been devoted almost exclusively to
my son's welfare: literacy training, occupational therapy,
relationship-building, counseling for post-traumatic stress. But what
strides he has made.
The boy who was still in diapers and said to be retarded when he came
to live with us is now a straight-A student at our local middle school. He
is rewriting the common scripts of autism and "attachment disorder." These
are hopeless scripts, unforgiving scripts in which the child can't give
back.
My son does, and others can as well. Recently, in response to my hip
replacement, he typed on his computer, "I'm nervous because Dad has not
brought me braces" - his word for crutches. I was just home from the
hospital - wobbly, a bit depressed, in pain. To my question, "Why do you
need crutches?" he responded endearingly, "You know how I like to be just
like you." My son was trying to make me feel better, taking on my
impairment, limping with me.
Ralph James Savarese is the author of the new book "Reasonable People:
A Memoir of Autism & Adoption."
--
~Nate.
Early Infancy Recognition
From the Schafer Report:
Research on identifying early clues of autism and other disorders and
testing treatments is booming. Here are some of the doctors and researchers
involved:
Dr. Fred Volkmar at Yale University is studying potential ways to
diagnose autism in the first months of life, including whether looking at
objects rather than people is a sign. "I think we're on the verge of being
able to do a much better job" of diagnosing autism in infancy, Volkmar said.
Researcher Stephen Porges at the University of Illinois at Chicago is
starting a five-year study of whether excessive crying past 6 months of age
might be an early sign of autism, attention deficit or other behavioral
problems.
Dr. Stanley Greenspan, a psychiatry professor at George Washington
University, is launching a multimillion-dollar study involving parents and
babies at risk for autism or attention deficit disorder. One group will
receive intensive behavior training, the other will not; both will be
compared through age 5.
--
~Nate.
testing treatments is booming. Here are some of the doctors and researchers
involved:
Dr. Fred Volkmar at Yale University is studying potential ways to
diagnose autism in the first months of life, including whether looking at
objects rather than people is a sign. "I think we're on the verge of being
able to do a much better job" of diagnosing autism in infancy, Volkmar said.
Researcher Stephen Porges at the University of Illinois at Chicago is
starting a five-year study of whether excessive crying past 6 months of age
might be an early sign of autism, attention deficit or other behavioral
problems.
Dr. Stanley Greenspan, a psychiatry professor at George Washington
University, is launching a multimillion-dollar study involving parents and
babies at risk for autism or attention deficit disorder. One group will
receive intensive behavior training, the other will not; both will be
compared through age 5.
--
~Nate.
Thursday, May 24, 2007
Interesting
Autistic Man Speaks For First Time In Over 50 Years
By Kay Quinn for Healthbeat.
http://tinyurl.com/3ye2pl
(KSDK) - Imagine not speaking for more than 50 years.
That was the case for Danny Will, a local man with autism. Will will
turn 60 in August and hadn't spoken for nearly 55 years.
Will functioned normally during his first few years of life. Around
the age of five he was diagnosed with autism. His father died when he was
seven.
By the time he was 13 and his mother had to institutionalize him at
Fulton State Hospital.
"He didn't speak the entire time he was in that institution," said
Mary Vanderklok, a training specialist at the Judevine Center for Autism.
In 1993, at the age of 43, Will came to live at Calverton House, a
home for people with autism run by the Judevine Center. Like many people
with autism, he works and does chores, but also gestures and engages in
repetitive behavior.
"Receptively, he understands directives," said Vanderklok. "He
understands what you're saying to him, what's expected of him but a deficit
for most people with autism spectrum disorder is that expressive language."
In all of his time at Calverton House, Will still wouldn't speak --
until last summer. He was taken to a local hospital for a test on his heart
and he spoke his first words in more than 50 years.
"And that was, 'I don't want that -- get away,' which was amazing,"
said Vanderklok.
Will still only speaks occasionally and only to those caregivers he
knows well.
"That's a remarkable man. There's just no other way to put it," says
DeVona Miner, a caregiver at Calverton House.
In spite of his silence, those who know him said Will is happy. They
also said he is living proof that we should all keep high expectations for
people with autism.
"We really didn't think Danny would ever speak. He surprised us in
that, so I think our motto is never give up," said Vanderklok.
--
~Nate.
Wednesday, May 23, 2007
Ramblings from a Daddy
I've been sort of a ghost lately, as I've just been stressed out and busy busy busy. Last week was aweful. Between the kids not eating ANYTHING I made and not having enough time time for ANYTHING, I was totally burned out by the end of the week. Kyle's appointment with the Child Developmental Center with Kristine was cancelled b/c she was sick. So they rescheduled me for ANOTHER month. So we'll go in on June 8th. I wasn't too happy about that. But, Kristine is the best in the Tri-Cities from what I'm told, as far as rehabilitation goes. There will be a team of therapists there to evaluate Kyle.
We went camping last weekend and it was awesome. We had so much fun....I'll have to get a new video up here. I have a couple to make...Jana wants me to make a slideshow with some pictures she dug up. I'll probably have that stuff up eventually. Things are so busy right now. I have two or three major house projects going right now too..there never seems to be enough time in the day for everything.
I'm rambling.
A Thanks to Jana's dad, Jim, for helping us with our electrical work in our house...converting an old panel and removing and re-routing two sub-panels. YEY! Our house won't burn down now :) That and I can start the dining room remodeling with the sub-panels out of the way. And thanks to Jim and Barb for watching Isaac during Kyle's appointments...he has a lot of them!! I really appreciate them....especially since they decided to live in the Tri-Cities :)
Kyle has an appointment with Kadlec Hospital's Speech Therapy professionals on Friday at 10:45. So pray that goes well and I get some good useful tools to take home with me. I'm also concerned about insurance coverage. They will cover 80% of our visits, but our yearly maximum is 30 visits. As anyone with autism knows Kyle can blow through 30 visits in two months EASILY. Sooooo I have to jump through some arbitration hoops so just pray everything goes well. The battles begin. The battles are everywhere.
I'm also pleading with the City of Richland to put in a couple road signs on my street that say either "Disabled Child at Play" or "Deaf Child at Play" Either will work for the purposes of making drivers aware. Currently, cars go about 40 MPH in our 25 MPH zone and I JUST WANT TO THROW ROCKS AT THEM!!!!!!!!!!!!!!!!!!! Kyle is fairly safe around the road but he does dart up and down the sidewalk. He knows the rule pretty well but STILL has no sense of danger. Zip Zilch. He smiles at the big cars as they drive by eight feet away from him.
Good news on the GFCF diet: I'm a better cook. Therefore, they are eating MORE of my food. Yey! It's getting easier......I made all kinds of goodies...I'll get some pictures up here soon. My favorite: Chicken nuggets....with actual gluten free breading...and they are yummy....at least Isaac thinks so....Kyle ate a few today....I bought some Gerber baby food vegetables to see if Kyle would eat them that way....Tried the SWEET POTATOS today....so far so good...he ate SOME of them..got tired of it real quick though.
ALSO, Kyle is eating his NASTY NASTY NASTY NASTY.......I can't say it enough NASTY liquid vitamins and minerals! Jana is giving them to him b/c I straight REFUSE. I wouldn't feed these to my dog....but at least Kyle's eating them so I'm happy. These things have like up to 15,000 times the amount of vitamins and minerals that are recommended for a daily dosage for an adult (depending on the vitamin/mineral)..THAT is why they taste so nasty... tastes like you're eating metal or something
We also started Kyle on his Methyl B-12 injections today....I opened the package and looked at the fluid in the syringe that has the APPEARANCE OF BLOOD and almost passed out...my knees got all wobbly...just the thought of giving that to my baby made me weak. Anyways...another Jana thing..I REFUSE to touch it..mess with it...or administer it....if it were up to me he wouldn't get it.... So I took his diaper up and lifted up his legs and she poked him in the butt and he gave me this VERY UNCOMFORTABLE LOOK.....Kinda like the "I just stubbed my toe" look. Anyways...turns out Jana poked him wrong....HOW do you poke a kid under the skin and not through the skin???? The odds of that....?? Anyways...a little Methyl-B12 bubble under the skin...I'm sure it will soak in over night. YUK. YUK YUK. Just keep me away from it all...But then again, as I've said, I'd rather get socked in the face than get a shot in the arm. I HATE NEEDLES!!!!!!!!!!!!!!!
ANyways....OVERALL....this week has been a great week!!!!!!!!
Thanks for your concerns and prayers.....
--
~Nate.
Interesting Article
I PULLED THIS OUT OF THE LA TIMES:
How to get kids to eat more vegetables
To many children, broccoli, beans and their ilk are just nasty. But a few clever strategies can turn that 'yuck' into 'yes.'
Susan BowermanWhat We Eat
May 21, 2007
The picky eating habits of children can drive parents to distraction. Foods that smell funny, or are too hot, too cold, too crunchy or too mushy: all are candidates for rejection.
And when it comes to trying to get kids to eat their vegetables, the task often seems insurmountable.
Youngsters naturally prefer tasty foods that are high in calories — a nod to their biology, which is designed to ensure adequate intake while they're growing rapidly. But these days, with kids eating more of these plentiful, palatable foods and exercising less and less, the most obvious rapid growth is in the size of their waistlines.
Numerous agencies, including the American Heart Assn. and the American Dietetic Assn., are calling for changes to our children's diets. They want kids to eat fewer high-fat, high-sugar foods in favor of foods with more vitamins, minerals and fiber — ones, in other words, that supply the most nutritional bang for their calorie buck.
No one would argue that one way to reduce calorie intake is to eat more nutrient-dense fruits and vegetables. But many kids have a food "neophobia" — literally, fear of the new — that reaches a peak between the ages of 2 and 6. And this, again, can partly be blamed on biology.
Avoiding the unfamiliar may be an evolutionarily adaptive mechanism — one that serves to protect us from eating potentially poisonous substances that existed in abundance in the plant-rich environment of our ancestors.
Still, studies suggest that with repeated exposure, dislikes can be transformed into desire.
In a report published in the journal Appetite in 2003, for example, researchers at University College London randomly assigned children ages 2 to 6 and their parents to one of three groups for a two-week study. In one group, parents offered their child a daily taste of a vegetable for which the child had indicated a low preference ranking.
In a second group, parents received only general nutrition information about how to increase fruits and vegetables in the diet. The third group served as a control — receiving neither dietary recommendations nor literature.
The kids who received daily exposure increased their liking and consumption of the food, and increased the ranking of the vegetable in question significantly more than children in the other two groups.
And, a majority of parents in the "exposure" group felt that the intervention could have a lasting effect on their children. In some cases, foods their youngsters previously wouldn't touch had actually become their favorites. One parent commented that her child looked forward to the daily tasting, because it had "made food more fun."
If the concept of repeated vegetable exposure sounds too daunting, a group at Pennsylvania State University in University Park suggest another tactic for parents — more of a vegetable "sneak attack."
In a study presented at a scientific meeting last month, the researchers added puréed broccoli and cauliflower to pasta sauce, increasing the nutritional value and decreasing the caloric density of the meal. Children fed the doctored dish could not distinguish it from the conventionally prepared item.
The kids, ages 3 to 5, showed no clear preference for one dish over the other and ate consistent amounts of both. As a result, they ate significantly more vegetables — while reducing their calorie intake by nearly 20%.
Of course, "hiding" vegetables from kids won't necessarily help them acquire a taste for them, which is important for lifelong healthy habits. But there are other strategies to try. It's been shown that kids who help take part in planting, harvesting, purchasing and preparing vegetables generally consume more of these foods. It's also known that parents who offer new foods and set good examples with their own dietary habits are also on the right track.
Still, a little covert cookery may be a good strategy for adults, too — recent surveys indicate that only 40% of Americans eat five or more servings of fruits and vegetables per day, and the newest recommendations are that we consume even more than that.
If sneaking a few vegetables into a pasta sauce, soup, casserole or meat loaf will increase vegetable consumption and decrease calorie intake, the whole family wins.
--
~Nate.
Monday, May 14, 2007
Costco
We went to Costco tonight. While we were there, we had dinner. Yes, we cheated on our GFCF diet, but Kyle ate a hot dog without the bun so he was okay. Isaac was so happy to eat pizza! We sat right next to an 8 year old kid and his 2 year old brother and dad. The 8 year old had autism and I could tell within 10 seconds of them sitting down. He was doing a lot of hand flapping and rubbing and flapping the table and moving his eyes and head all funny. I just knew he had autism. So I striked up a conversation with his dad. I wasn't sure how to pop the A question, but I found the right opportunity. Isaac was really excited about his ice cream and he was being very vocal about it, as he was telling the guy (John). I said, "yes our older son here does all the talking and our younger son doesn't talk at all, because he has autism." And so of course he said "oh yeah my son Thomas has autism." So anyways, he was a very interesting child. Really neat to see an older kid with autism and how they act. So far now, I've met an 8 year old, and a 16 year old. Thomas' dad John was a really nice guy. Because Thomas has severe autism, John and his wife have been through EVERYTHING therapy, even Dr. Smith. I was really curious about Thomas' schooling, so John went into great detail about how he had to do battle with Pasco school district and his insurance companies to get Thomas the appropriate education. He has a ton of connections, and knows Kristie from the Child Developmental Center. He said she is probably the best person to see in the Tri-Cities, as she is very specialized with autistic kids. Kyle will be seeing her very soon. She is the one doing his evaluation for therapy. John takes his son to Spokane and Gonzaga a lot to work with different specialists. He is a neat kid though! His dad told him to say "bye" and although he didn't say it, he really looked focused and tried hard. You could tell he really wanted to say it. These kids are absolutely fascinating. I was fortunate to meet John. He gave me his card and said I could call him anytime, which I probably will. He works for a chemical company as a field biologist, and has his PhD in biology.
We were loading the stuff up in the trailer in the parking lot and John came by in his truck and gave kyle one of those spinning wind wheels on a stick that we used to play with when we were kids. I hadn't seen one of those in forever. Kyle absolutely loved it! He laughed really hard when momma blew on it and made it spin.
--
~Nate.
Friday, May 11, 2007
Autism-Genetic Link
Science Daily — Using an innovative statistical approach, a research
team from Washington University School of Medicine in St. Louis and the
University of California, Los Angeles, has identified two regions of DNA
linked to autism. They found the suspicious DNA with a much smaller sample
of people than has been used traditionally in searches for autism genes.
Autism -- a disorder that involves social deficits, language problems
and repetitive, stereotyped behaviors -- affects around one in 1,000
children. And the combined incidence of autism spectrum disorders, which
include Asperger syndrome and pervasive developmental disorder, brings the
total number of affected children to one in every 150 births. Boys are
affected three to four times more often than girls.
There's clearly a genetic component to autism, according to John N.
Constantino, M.D., associate professor of psychiatry and pediatrics at
Washington University School of Medicine and a co-principal investigator on
this latest study. If one child in a family is autistic, there's a 10
percent chance a sibling also will have autism. Past research has isolated a
few regions of DNA linked to autism, but very few of those studies have been
replicated, so no specific autism genes have yet been identified.
"Those older studies used what's called an 'affected sib pair' design
that looks for genetic markers in siblings with autism," says Constantino.
"That approach has worked well for single-gene disorders, but autism is a
complex disease that may involve many genes that each make very small
contributions. When that's the case, it's harder to find genetic markers."
So Constantino's group, in collaboration with the other co-principal
investigator, Daniel H. Geschwind, M.D., Ph.D ., and neuropsychiatric and
genetics researchers at UCLA, is using a different approach. They report
their findings in the April issue of the American Journal of Psychiatry.
"Although we once believed you either had this condition or you
didn't, we now know that there's a continuous distribution of autism
symptoms from very mild to very severe," Constantino says.
That means in families where a child is autistic, parents and
unaffected siblings may have very subtle communication impairments or
behavioral tendencies that would be considered autistic only in their most
severe forms. Those traits may indicate genetic tendencies that contribute
to autism and now can be measured with a diagnostic interview tool called
the Social Responsiveness Scale (SRS), which Constantino developed with his
colleague Richard D. Todd, Ph.D., M.D., at Washington University.
Using the SRS to gather data about both children with autism and their
unaffected parents and siblings allowed the researchers to take a more
quantitative approach to find subtle symptoms of autism that aggregate in
families. In all, they used the SRS to study members of 99 families who were
part of the Autism Genetic Resource Exchange (AGRE).
"We characterized everyone using the quantitative measures that the
Social Responsiveness Scale provides," Constantino explains. "With the SRS,
we looked not just at whether a person has autism but more systematically at
the degree of autistic impairment. Then we analyzed their genetic material
and found significant linkage to these symptoms on regions of chromosomes 11
and 17."
--
~Nate.
team from Washington University School of Medicine in St. Louis and the
University of California, Los Angeles, has identified two regions of DNA
linked to autism. They found the suspicious DNA with a much smaller sample
of people than has been used traditionally in searches for autism genes.
Autism -- a disorder that involves social deficits, language problems
and repetitive, stereotyped behaviors -- affects around one in 1,000
children. And the combined incidence of autism spectrum disorders, which
include Asperger syndrome and pervasive developmental disorder, brings the
total number of affected children to one in every 150 births. Boys are
affected three to four times more often than girls.
There's clearly a genetic component to autism, according to John N.
Constantino, M.D., associate professor of psychiatry and pediatrics at
Washington University School of Medicine and a co-principal investigator on
this latest study. If one child in a family is autistic, there's a 10
percent chance a sibling also will have autism. Past research has isolated a
few regions of DNA linked to autism, but very few of those studies have been
replicated, so no specific autism genes have yet been identified.
"Those older studies used what's called an 'affected sib pair' design
that looks for genetic markers in siblings with autism," says Constantino.
"That approach has worked well for single-gene disorders, but autism is a
complex disease that may involve many genes that each make very small
contributions. When that's the case, it's harder to find genetic markers."
So Constantino's group, in collaboration with the other co-principal
investigator, Daniel H. Geschwind, M.D., Ph.D ., and neuropsychiatric and
genetics researchers at UCLA, is using a different approach. They report
their findings in the April issue of the American Journal of Psychiatry.
"Although we once believed you either had this condition or you
didn't, we now know that there's a continuous distribution of autism
symptoms from very mild to very severe," Constantino says.
That means in families where a child is autistic, parents and
unaffected siblings may have very subtle communication impairments or
behavioral tendencies that would be considered autistic only in their most
severe forms. Those traits may indicate genetic tendencies that contribute
to autism and now can be measured with a diagnostic interview tool called
the Social Responsiveness Scale (SRS), which Constantino developed with his
colleague Richard D. Todd, Ph.D., M.D., at Washington University.
Using the SRS to gather data about both children with autism and their
unaffected parents and siblings allowed the researchers to take a more
quantitative approach to find subtle symptoms of autism that aggregate in
families. In all, they used the SRS to study members of 99 families who were
part of the Autism Genetic Resource Exchange (AGRE).
"We characterized everyone using the quantitative measures that the
Social Responsiveness Scale provides," Constantino explains. "With the SRS,
we looked not just at whether a person has autism but more systematically at
the degree of autistic impairment. Then we analyzed their genetic material
and found significant linkage to these symptoms on regions of chromosomes 11
and 17."
--
~Nate.
Thursday, May 10, 2007
INSANITY!!
Isaac, Jana, and I have been adjusting well to the GFCF diet. However, Kyle is still as picky of an eater as he was originally, before the diet. I am not sure what we're going to do. All he will really eat, without struggle, are hotdogs, eggs, fruit, and rice. That doesn't leave much room for other meats, and vegetable are out of the question. Unfortunately, he doesn't eat broccoli anymore like he did before the diet. We figured if we could get it down him a couple times per week we were doing fine, but now he won't even look at it.
I'm open to suggestions...torture? starvation? magic potions? more tickling?
--
~Nate.
--
~Nate.
Monday, May 7, 2007
Kyle's Doctor Appt.
Today Kyle had an appointment with Dr. Sierra in Kennewick, who originally diagnosed him with autism. She gave us the results from her CARS analysis, which tells us the severity to which he is autistic. It is a fairly simple analysis which asks a series of questions about the child and asks the reader to rate the child on a scale of 1-4, with increments of 0.5. Jana and I filled out the same report before we went to the appointment. Personally, I think parents, not physicians, should fill out the report. They know their children better than ANY doctor. The analysis mostly helps the parent know where to focus rehabilitation efforts. So Dr. Sierra gave Kyle a 36/60, which classifies him as moderately autistic. Jana and I both scored in the 40s when we filled it out separately. The higher the score, the more severe the diagnosis. But, like I said the score doesn't mean as much as the focus for treatment.
Dr. Sierra told us some interesting things we didn't know about autistic children. They are exclusively visual learners. Verbal communication works only for commands, orders, and obedience, not learning. Kyle will literally look at the world around him and take everything in! That is how he processes information and makes conclusions. I will have to get very creative with teaching him the things he needs to learn.
Secondly, Kyle takes everything literally. He can not separate make believe from reality. That does not mean he hallucinates or sees different things than we do, it just means he processes them differently. For example, if he sees mommy in the living room, he thinks mommy is in the living room (as you and I do). But, if he sees mommy on the TV, he will still think mommy is in the living room, even if she is not. It's really confusing and strange. No wonder he got really confused when he saw himself in my videos!! :)
I read today about a new study recently published which said that autistic kids can't tell the difference between frowns and smiles, and the meaning behind those emotions. That correlates with what Dr. Sierra said today about autistic kids not understanding emotions.
One thing she did say, which relieved me is that autistic kids love and obey rules!! Once they learn the rules, they absolutely obey them. It becomes part of their routine. And they love routines. Autistic kids who see other kids on the playground breaking the rules tend to "tattle" because they see a violation of the rules, not another person with their own personality. A great example of rules: Kyle knows he can not run into the road at MY house. He will frighten us as he runs towards the road but then makes a sharp turn to the right or the left and runs down the sidewalk. But, he knows the rule and I haven't seen him do it in a LONG time. BUT BUT BUT, Kyle WILL run into the road at Gramma's house. Why? I think it's because it's a new environment, so new rules. He hasn't established that that road is off limits too. I love digging into his little head. :) It helps me understand him better, which will only help us train him to be a good little boy.
That's all for now...
--
~Nate.
--
~Nate.
Saturday, May 5, 2007
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