In the News

Autistic children are immune to contagious yawns: The BPS Research Digest reports that children with autism are seemingly 'immune' to contagious yawning - perhaps as a result of their reduced social awareness.

Little Piece of Cute

You Can Have ALL The Cookies!

Today, Kyle started to say the word, "Come." When pulling on my hand, he actually repeated "Ka" after I prompted him with "Come." He did it when he wanted to go to the swing, and he did it when he wanted another Oreo. After already giving him a cookie, I said "Mmmore" when we approached the blue bag of goodness. He stared down that pretty little package and said "mmmow." So I gave him the cookie....all the darn cookies! He repeated that process a couple times. I was excited!

"I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble." - Helen Keller

~Kyle's Daddy.

He Talked!!

Okay, well maybe he didn't recite the Pledge of Allegiance, but I've been working on this one for three weeks! :

 

I've been trying to get Kyle to say "Go" when I find a motivating activity which is appropriate to the command, such as swinging. Apparently swinging, what I thought was his favorite thing to do, wasn't good enough to do the trick. I tried everything: using one of his favorite movie character's voice (Boz the big green Bear: yes, people would pay money to hear me talking like a big dumb bear), I tried not letting him swing unless he said it (that wasn't any fun Dad), I tried prompting him by pushing him once and requiring him to say it. NOTHING! Nothing worked...and I knew he could say "Go!"     

 

One thing he does like to do is watch me mow the lawn. This evening, he was following me around the yard with interest and enthusiasm. He seemed to get extra excited when I was about to start the mower. So I said "Here we......(and paused)" He know's that a prompt for, and he said, "GO!" I was so excited I probably looked like a crazy man dancing up and down, but WHO CARES!!! :) He was proud of himself. He said it everytime I was about to start the mower. Yey for Kyle! He also said "byebye" and "gbye" when I left to take the grass to the backyard.

 

Another Victory!

 

Kyle's Daddy.

General Improvements!

Kyle has made some quite remarkable improvements, ironically, in the last two weeks. I say ironically, because he's been on a break away from the Child Developmental Center. More likely resulting in a coincidence rather than my superb skills of training (haha), Kyle has improved in meaningful speech and general response to commands. Kyle says "byebye" at appropriate times, even without prompting (or playback, aka echolalia). However, he does this on his own time, when he decides the person is worthy of saying "byebye" to. So far only his mother and his Grandpa Jim have been able to conjure up the friendly gesture. Secondly, Kyle has greatly improved in responding to the command, "Kyle come here." He immediately responds to the command with eye contact, and a sastisfying success rate of obedience (I would say 7/10 times). We look forward to many happy days ahead. Not very many parents get to celebrate as many milestones as we do. For that, I am thankful. 

 

 

Sincerely Yours,

 

 

Kyle's Daddy.     

Dads Fall From the Sky!

Uh-Oh

Doctor Charged in Autistic Boy's Death

Aug 22 02:49 PM US/EasternBy JOE MANDAKAssociated Press Writer
PITTSBURGH (AP) - A doctor was charged with involuntary manslaughter Wednesday for administering a chemical treatment that state police say killed a 5- year-old autistic boy.
The child, Abubakar Tariq Nadama, went into cardiac arrest at Dr. Roy E. Kerry's office immediately after undergoing chelation therapy on Aug. 23, 2005.
Chelation removes heavy metals from the body and is approved by the Food and Drug Administration for treating acute heavy metal poisoning, but not for treating autism. Some people who believe autism is caused by a mercury-containing preservative once used in vaccines say chelation may also help autistic children.
The boy's parents had moved from England to the Pittsburgh area to seek treatment for his autism. They have filed a wrongful death suit against Kerry, and the Department of State is trying to revoke his license.
The Department of State has alleged that Kerry prescribed an IV push—meaning the drugs are administered in one dose intravenously—despite warnings that the method could be lethal.
Slippery Rock District Judge Clifford Woessner's staff confirmed that an arrest warrant was issued for Kerry. It wasn't immediately clear if police planned to arrest Kerry or mail a summons.
Kerry's Advanced Integrative Medicine has offices in Greenville and Potersville. The receptionist at the Greenville office said Kerry was treating patients and was not immediately available for comment Wednesday.
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

GFCF Diet, Take (2...3...4? I don't know!)

After listening to an absolutely captivating and remarkable nutritionist at the Autism Conference named Elizabeth Strickland, we decided to try the GFCF for a second round. She explained some things to us that made sense, and convinced us we need to give it an honest try. Kyle displays some symptoms of an allergy to at least milk. This time around, we have to be soy free. Some kids react to soy just like they do gluten. It all made sense when she explained it. And we'll give it a full three months, as that is the most recommended length (although I'm not convinced it needs to be that long).

 

I'm not expecting a miracle. I'm pretty sure Kyle won't be cured. But if it makes his Gastro-Intestinal issues improve, then that will be good.

We took him off milk today. So now he's drinking calcium fortified chocolate rice milk. He never drinks milk unless it's chocolate...haha. We let him, b/c it's one of the things in life he really enjoys. The nutritionist gave us the A-ok! 

 

We'll let you know how it goes this time around.  
 

~Kyle's Daddy.

Upcoming Therapy

After becoming ever-increasingly frustrated by the lack of resources for autistic kids in the state of WA, I have decided to take this bull called "autism" by the horns. I will not sit by and let my son become a social vegetable, stimming and spinning wheels to a mindless rhythm in addition to his many other redundant behaviors. I will not sit back and let Kyle grow up in a world, knowing only the language of babble and echolalia. I won't. I refuse. As much as I love his sense of humor, the way he laughs at the silliest things, I won't let them rob him of true joy and potential. If this society does not want to help my child, I will help him myself. I can't wait on standby until resources come. I don't have the time to stir for them. I don't have time to battle insurance companies. I don't have time to work three jobs to pay for the best therapist money can buy. Every second, minute, hour is time lost. I will fight until I don't have any fight left.  I will become the therapist. I will treat my son. That is my decision. That is my direction, and this is OUR future. This is autism. God willing, my son will speak. He will write. He will laugh when everybody else laughs. He will cry when everybody else cries. He will have friends and, yes, he will walk down next to his brother and receive his diploma.     

 

I have more books to read than I read in four years of college. I have recently taught myself how to speed read so I am not wasting precious time. I'm considering two options and here they are: 

 

1) ABA Therapy. I know I said I didn't like it in the past, but I'm reconsidering now. Why? It's time tested and reliable. That is what I need. Reliability. It's a little more structured than I would like, and more than you would know, but it's still worth considering. I'm currently reading "Let Me Hear Your Voice" by Catherine Maurice. It's a mother's account of ABA and autism for her daughter.

 

2) Pivotal Response Treatment. This is a spin off of ABA therapy, and uses natural environments to teach children ABA type principals, instead of the structured and regimented style of ABA itself. Children are the implementers of their interests, instead of therapists defining what they get to interact with. The rewards are internal ( i.e. getting to continue play), rather than external like ABA (i.e. cookie, cracker). 

 

So far, those are the ONLY two I'm considering. I've read tons of materials on other therapies and am researching these for now. I'll let you know what I decide to do. Then I'll go into more detail about it.  

 

 

--
~Nate.

2007 Southeastern Washington Autism Conference

Hi Everyone! It's been a while since I've written anything on this blog....probably because we've been so busy. I'll try to keep you more up to date, especially since there will be more happening with Kyle in the near future...

 

Last week, my mom, Jana, and I attended the 2007 Southeastern Washington Autism Conference. The boys were cared for at Vista Elementary for 8 hours+, for two days and they did excellent! Isaac thought he was going to school. He loves the idea of school and can't wait until he gets to go. He was so proud to carry his little backpack into Vista.. 

 

There were many fabulous speakers at the conference; we were lucky to have them all here. The first was Dr. Dawson, the female director of the Autism Center at University of Washington. She spoke on recent research in Autism, as well as promising therapies such as Pivotal Response Treatment (PRT) and the Denver Model. The most engaging and insightful speaker of them all was Elizabeth Strickland, a nutritionist with over 30 years experience specialized in autistic feeding behaviors and nutrition. We basically left that presentation understanding why Kyle doesn't eat more than a few foods and what we can do to get his nutrition needs up to par.

 

There were many breakout sessions, and the three of us parted ways to cover them all for both days. The first day, Jana attended the nutritionist. I attended the Applied Behavior Analysis session presented by Sarah Haws, a consultant and behavior analyst. She did a good job convincing me that ABA isn't that bad after all. I like her approach: she uses positive reinforcement most of the time....and does a dang good job with it. I actually paid to attend one of her presentations on Saturday on how to teach children social play. I was very interested in this, as Kyle is always around other kids at church and home group. 

 

I also attended Politics and Advocacy the first day. I learned about how to get involved politically for my child. I am interested in advocacy because I believe the state of WA should cover therapy for the recommended 35-40 hours per week just like Wisconsin, Hawaii, and a couple states already do. Interest groups are advocating to push insurance companies to cover the therapy and I think that's the toughest approach. I believe, as rates went from 1:10,000 in 1987 to 1:150 in 2006, we have a huge problem on our hands and we have to take care of it as a society. The taxpayers, you and I, should take the burden because if we don't, it will cost more money in the long run (ie. school system care, welfare for adult autistics, etc.).        

 

Mom attended a session on HANDLE therapy. At first, she went because she thought it looked ridiculous and wanted to get a few laughs. HANDLE is a holistic approach to the treatment of austism. Some of the methods sounded absurd, but it turns out mom was quite impressed and so was just about everyone walking out of there. The session was taught by a 50 yr old autistic woman, who is mostly neuro-typical now. She sounded pretty good...I'm sorry I missed her lecture, but I'm reading her book....

 

That was about it for the conference....Mom and I both attended a couple of non-mentionable sessions, which were pretty much a dissapointment, but other than that, the two days was awesome!   

 

I'll have some more for you soon.........

--
~Kyle's Daddy.

At the Beach

 

Update

Kyle is starting his first week at the Child Development Center in Kennewick. There, they work on speech therapy, integration, and social skills with other children. He is doing great so far. He cried at the beginning and the end of his first day, but only cried at the beginning of his second. He attends four days per week, for three hours per day. We're looking forward to his progress there.

 

Kyle was going to speech therapy at Kadlec, but my insurance wouldn't cover their services. According to the company, he needed to physically have something wrong with him to receive speech. I suppose we'll just count on what he gets now at the CDC.    

--
~Nate.

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.

Kyle's Castle

 

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.

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.

Isaac and me

 

A picture from our camping trip....I just liked it

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.

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.

Isaac & Kyle