Tuesday, June 19, 2007



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.
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Kyle's Castle

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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.   


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.

Wednesday, June 6, 2007

Isaac and me


A picture from our camping trip....I just liked it
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Monday, June 4, 2007

Vaccine Test Case Reaches Federal Court


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?


Isaac & Kyle