Sunday, December 9, 2007

Kyle


"I am overcoming autism! And I love chocolate milk!"
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Tuesday, November 27, 2007

More Blessings!

Great news from Dr. Grewe.....
He and several other doctors in the area with different specialties, including Kyle's teacher at the development center, are going to start doing assessments of kids as a team.
After seeing us for the initial consultation (Kyle was not there), the doctor said that Kyle would be a perfect patient to practice the new "team assessing" on, so that they can get a feel for working all together.  So basically, Kyle will be able to get a very good assessment, buy a whole group of doctors, much sooner than expected, for Free!  That will satisfy the school district, so that he will get all the services he needs.  It's a real blessing.

Kyle keeps on doing terrific.  It has been really exciting to see him start to initiate talking more.  He's been saying short two or three word sentences, and definitely recognizes the meaning of most words he says. Just yesterday, he walked up to me with a teddy bear and showed it to me and said "Bear!"  Not only did he say it without prompting, but he also wanted to show it to me, which is a great step in the social interacting and relationship building stuff.  Sharing interests with others does not come naturally for him, but it's really important.  After all, we don't just want him to be able to talk, we want him to be able to have relationships with people.

And another big step for Kyle.....he no longer sleeps in a crib!  Isaac and Kyle got bunk beds for Christmas (and birthday :) ).  He used to always roll around a lot at night and end up with his feet on his pillow and his head under his bead, or some other odd position, but he has been more normal lately, and last night he slept with his head on his pillow, under his blanket, in the middle of his new bed.  It was pretty cute (I just had to peek in and see!).

Thursday, November 15, 2007

Jason McElwain (a must see)

This video tells a lot about the love of a community for their kids...especially their autistic ones.

Saturday, November 3, 2007

The Good Doctor

Jana and I have an appt. with Dr. Scott Grewe this November 19th. He will have an initial consultation with us regarding Kyle and make a determination of whether he needs to evaluate Kyle in order to obtain an "official" diagnosis. This first appt. is more or less a screening, to make sure we aren't wasting $1500 on an evaluation. Yes, he is expensive!! But, he's the best there is. And the school district needs a diagnosis from a neuropsychologist. I was going to take Kyle to Spokane, but I'm working out a deal with my insurance company to see Dr. Grewe.

However, things are going to get tricky. Jana is most likely going to take a new job next week. That means different insurance companies...yadda yadda..so we'll see.



 

Monday, October 29, 2007

Now I know my ABC's!

Kyle has been doing great!!
Just this week he has started singing quite a bit, including "Twinkle Twinkle Little Star".
And a big surprise (since no one had been trying to teach him this) Kyle suddenly sang the Alphabet! He's been doing it over and over again! Sometimes just "ABCDEFG", or "LMNOP" or the whole thing.
And if that wasn't enough...he counts to 10 too! This was another talent we didn't know he had. Almost every day he surprises us with what he can do and say.

It is really amazing how much progress he has made in the last 6 months. From his latest Personal/Social development assessment, his teacher reported that he can use one word phrases and gestures to make his needs known, imitate gestures in a song, orient to his name, follow the command "come here", imitate simple motor actions, drink from a cup and eat with a fork or spoon with minimal spilling, and more. He will repeat almost anything we say when we have his attention. And a huge step is that he is starting to label things he recognizes on his own. Like, when he sits down to breakfast, he says "eggs" without us saying it first. Today, he even played the little "where's your nose?" game and pointed to all his face parts and said them. I've been trying to get him to do that since he was 1. It is hard to believe it was only a few months ago that Kyle wouldn't say a single word, wouldn't respond to his name or obey any instruction.

He is still doing well with the gluten free, casein free diet. We have been slowly adding more things to his diet that he will accept. Unfortunately one of those things is suckers....he LOVES them. That's the only Halloween candy he wants. We took him to a little trick or treating thing at the child development center today, and whenever someone gave him anything that wasn't a sucker, he just threw it over his shoulder! That's ok, Isaac won't mind eating the rest.

~Kyle's Mommy.

Trick or Treat!

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Wednesday, October 3, 2007

What a Great Idea!

Families With Autistic Children Get A Break At Israeli Vacation Spot
http://tinyurl.com/369438

     Upon first glance, Aluteva looks like another homey and quaint country
family resort in northern Israel, one of the country's most popular vacation
destinations. The campus is surrounded by forest trees at the edge of
Carmiel, families are lounging on plastic lounge chairs, and the green lawns
and playground are dotted with colorful picket fences. Only upon closer look
does it become apparent that Aluteva is highly different than any other
country resorts in the area.
     Aluteva is the only vacation spot in Israel, and possibly in the
world, designed to cater to families with autistic children. The clues
quickly become obvious; the campus is enclosed by fences and a security
gate, the pool is raised instead of at ground level, and a young boy paces
in a repeated pattern along the cement paths, clapping his hands.
     Aluteva doesn't have the funds or intention to offer five star
amenities, but it provides one amenity that makes some families feel like
it's a five star resort: sensitivity to the needs of children with autism.
     The concept was devised in 2003 by Alut, the Israeli Society for
Autistic Children, to provide an innovative, permanent year-round solution
for families for whom vacation is an essential need, but one that is often
out of reach.
     "We understand the complexity for families with autistic children to
go out on vacation," explained Aluteva's director Nechama Amidan. "Often
they don't take a vacation because it's difficult to go out on a vacation
with an autistic child given the behavior of the child and safety concerns.
The children are sometimes not aware of the dangers, and they can jump in a
pool, cross a red light. They require the parents' constant surveillance."
     Vacation is particularly difficult for families of children diagnosed
with low-functioning autism since at times these children can exhibit
behaviors that deviate from what is socially acceptable in public places. At
one point during this reporter's tour at Aluteva, a 15-year old boy named
Ron repeatedly came up to smell my hair, a behavior which would have likely
startled any vacationer at a regular hotel.
     "He seems to like certain smells, certain shampoo smells. You're not
the first one, but you can take it as a compliment," Ron's mother explained
on the lawns of Aluteva. Ron's parents and younger sister are regulars at
Aluteva. Ron cannot read, write, or speak, and smelling hair is likely a
form of self-stimulation and a means of social interaction.
     "My son needs constant activity; it's hard taking care of him. He
likes going places, but it's hard to take him places because of the way he
behaves. He doesn't enjoy himself, and we have to run around after him."
 
I thought this was such a great idea...I want to start one here!! or maybe a not-for-profit Chuck-E-Cheese type after school center for autistic kids with lots of stuff to stim and play with!! With plenty of volunteers to play with the kids so the parents can sit back and relax hahahaha..anybody have a few million bucks to loan me?

Tuesday, September 25, 2007

Update on Kyle

Kyle has been doing fantastic lately! He is really enjoying talking and tries his best to say anything. Yesterday, his therapist at the Dev. Center said he repeated over 30 words for her!! Some were well pronounced, most were not. But still- he's trying hard!! Jana and I are so proud of him...He's made this incredible improvement over the last week. Just two or three weeks ago he was tantruming whenever we wanted him to say "swing" before going.

Some things he's been saying:

Me
Me go
Cocoa (for choc. milk)
Me Cocoa
All Done
Up
Hello
Hello Hello
Hi
Car
House
Shoe
Switch
Light
Vroom Vroom
Choo Choo
Hot Dog
Swing
Cookie
Ball
Tickle
Ready, Set, Go
"Hi Ho Sliver, Away!" (His favorite Veggie Tales movie line)
Mama (the most important one)

Way to go Kyle!! Thank you Jesus

This Girl Is Cute


I just had to upload this just in case you haven't seen it yet...makes me want a daughter!

Friday, September 14, 2007

Autistic Man Singing National Anthem at Fenway Park



You'll have mixed emotions with this one: you'll laugh...but at the same time, you'll be proud of this guy and the crowd for supporting him! He did a great job..

Sunday, September 9, 2007

More Info

Funding for treatment in Wisconsin

The state of Wisconsin currently offers funding for in home autism treatment through a waiver system. Children under the age of eight with a diagnosis of an Autism Spectrum Disorder who demonstrate a medical need may be eligible to receive up to three years of funding for intensive autism treatment. Children older than eight may be eligible for reduced funding for a variety of services.

The waiver is offered state-wide and is administered by individual counties. County case managers work directly with families to complete the waiver application process. Some counties have chosen not to administer the waiver, and in these counties, the state has contracted with private agencies to assist families interested in securing funding.

Sometimes the Grass is Greener on the Other Side

Wisconsin services
Wisconsin Early Autism Project offers services to Wisconsin children through one of five clinics located in Madison, Brookfield (Milwaukee area), De Pere (Green Bay area), Onalaska (La Crosse area), and Eau Claire.

Children are eligible for our program if they are under the age of eight and have a diagnosis of an Autism Spectrum Disorder. Children without formal medical diagnosis may receive a diagnosis from our licensed Clinical Psychologists. All children must have an Initial Screening by one of our psychologists to ensure that our program is clinically appropriate for their needs.

All children in our program receive individualized treatment in their homes to meet their needs under the supervision of experienced clinical staff, including a licensed Clinical Psychologist, Clinical Director, Clinical Supervisor and Senior Therapist. This team of professionals trains the family and therapy team to implement curriculum using behavioral interventions which form the basis of Lovaas' approach: the use of discrete trials, positive reinforcement, extinction, prompting, shaping and programming for generalization. In addition, a variety of other treatment approaches and strategies may be used to teach specific skills when appropriate for individual children.

Children receiving our intensive services in the state of Wisconsin are able to receive up to 35 hours per week of treatment using funds from a children's waiver program that is administered by most counties on behalf of the state. Children in counties not participating in the waiver receive case management by a subcontracted private agency. These 35 hours include face-to-face treatment hours, a team meeting, supervision, and associated travel. In addition, each child sees a Clinical Psychologist on a regular basis to ensure program efficacy. Our Service Coordinators work closely with our clinical staff, county case managers and state personnel to ensure that each child receives therapy according to his or her own individual needs.

While we recognize the need to contain costs, we continue to be committed to providing therapy programs that are proven through scientific research to be the most effective treatment available today for children with autism. All children in our program get the most therapy they possibly can up to the limit of their state funding. In some cases, families choose to purchase additional hours of therapy in order to more closely match the model proven by research to be most effective. Purchasing additional hours is strictly optional and is not requirement for participation in our program.

It is important to remember that the window of opportunity for children to make significant outcome changes is limited. Each child gets on chance to change, grow and learn. The most critical choice that families will make in pursuing treatment is choosing a program with the expertise and staff to take their children to the best outcome they can achieve. These years cannot be recaptured. We remain committed to providing the highest quality therapy driven by scientific research that is currently available anywhere in the world, and will do our best to ensure that every child makes the best possible outcome.

Saturday, September 8, 2007

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.

Friday, September 7, 2007

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.

Sunday, September 2, 2007

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.

Wednesday, August 29, 2007

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.     

Wednesday, August 22, 2007

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.

Tuesday, August 21, 2007

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.

Sunday, August 5, 2007

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.

Tuesday, July 17, 2007

At the Beach

 
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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.

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.
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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.   

--
~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.

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

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.

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.

Isaac & Kyle

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.

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.

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.

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 Bowerman
What 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.

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.

Monday, May 7, 2007

Good Times

 


Pictures of the kiddos, and some GFCF mac n' cheese and yummy dessert Jana made.
Posted by Picasa

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.

Saturday, May 5, 2007

Thursday, May 3, 2007

Awesome Article!

Discover Magazine
Understanding Autism: The Answer May Lie in the Gut, Not in the Head
April 2007

For a copy of this article, click here. What a FANTASTIC article! Please read if you have 5 minutes.

~Kyle's Daddy.

Wednesday, May 2, 2007

Tickle & Sleep



I'm having way too much fun with this!

Jump!


This is a fun one!

A lil' video


Hope you like it!
~Kyle's Daddy.

My First Video

I'm experimenting with putting videos up...more coming soon!

Tuesday, May 1, 2007

GFCF Diet Info

There's been some curiosity about the gluten-free, casein-free (GFCF) diet. So, I'll tell you what it's all about and why our family is now on it.
 
" Based on reports from caregivers, case studies, and observation of patients with schizophrenia and children with severe behavioral disorders, Dr. FC Dohan hypothesized, in 1960s and 70s, that gluten and dairy foods might worsen these behaviors. He noted that in many cases, a restricted diet could lead to significant improvement or recovery from these disorders. For several years, the biochemical explanation for this phenomenon remained unclear. However, several other studies seemed to bear out this observation, and in 1981, using more advanced laboratory technology, Dr. Karl Reichelt, Director of Clinical Chemistry for the Department of Pediatric Research at the Rikshospitalet (National Hospital) in Oslo, Norway, found and reported abnormal peptides in the urine of schizophrenics and autistics. Peptides are pieces of proteins that are not completely broken down into individual amino acids. Dr. Reichelt has observed that these peptides, which are 4 or 5 or 6 amino acids long, have sequences that match those of opioid peptides (casomorphin and gliadomorphin). The known dietary sources of these opiate peptides are casein (from milk) and gliadin or gluten (from cereal grains). He has since conducted several studies examining this finding, as have several other researchers, including Paul Shattock at the University of Sunderland in England, Dr. Robert Cade at the University of Florida, Gainesville, A. Vojdani at Immunosciences Laboratory, and H. Jyonouchi at the Dept. of Pediatrics/NJ Medical School. The best evidence for this correlation lies in the thousands of case reports of improvement or recovery of children with autism on this diet. However, responsible physicians who have taken the time to review these studies must agree that there is, indeed, significant scientific evidence to support a trial period of careful elimination of these proteins from the diet of children on the autistic spectrum.  " (Taken from http://www.autismndi.com/news/display.asp?content=Resources&shownews=20040721150209  )
 
FAQ:

What happens when they get these proteins?


Researchers in England, Norway, and at the University of Florida have found peptides (breakdown products of proteins) with opiate activity in the urine of a high percentage of autistic children. Opiates are drugs, like morphine, which affect brain function.

What are my child's nutritional needs?

There are six basic things a person needs from food: water, protein (and amino acids,) carbohydrates, fats, vitamins, minerals (including iron & calcium.) In addition, food contains certain phytochemical substances that seem to help with functions like disease prevention. It is helpful to consult a nutritionist about the use of supplements such as pycnogenol for any child on a limited diet.

Children who have gone for one year eating only chicken, canola oil, potato, rice, calcium-enriched beverages, and a liquid multivitamin supplement with minerals have had excellent results on nutritional blood tests. You'd be surprised to learn just how unnecessarily varied an American diet is, compared with the diets of other cultures!

So, if I can't give him milk or wheat, and if he has some other food allergies, what do I feed my child?


Most kids are okay with chicken, lamb, pork, fish, potato, rice, and egg whites. Parsnips, tapioca, arrowroot, honey, and maple syrup are usually okay too. French fries from McDonalds are currently gluten free (but may contain soy or corn.) Certain white nuts, like macadamia and hazelnuts, are also usually tolerated. Others kids may be okay with white corn, bacon, fruits such as white grapes or pears, beans, sesame seeds, or grains such as amaranth and teff (available at natural foods stores.) There's always something to feed them - even the most finicky kids seem to like sticky white chinese rice or french fries.

What else contains gluten?


Wheat, oats, rye, barley, kamut, spelt, semolina, malt, food starch, grain alcohol, and most packaged foods - even those that do not label as such. There is a lot of information on gluten intolerance because of a related disorder called Celiac Disease. The nearly complete list can be found at http://www.gfcfdiet.com/unacceptable.htm

Isn't milk necessary for children's health?


Americans have been raised to believe that this is true, largely due to the efforts of the American Dairy Association, and many parents seem to believe that it is their duty to feed their children as much cow's milk as possible.

However, lots of perfectly healthy children do very well without it. Cow's milk has been called "the world's most overrated nutrient" and "fit only for baby cows." There is even evidence that the cow hormone present in dairy actually blocks the absorption of calcium in humans.

Be careful. Removing dairy means ALL milk, butter, cheese, cream cheese, sour cream, etc. It also includes product ingredients such as "casein" and "whey," or even words containing the word "casein." Read labels - items like bread and tuna fish often contain milk products. Even soy and rice cheese usually containcaseinate.

For more information on dairy-free living, there's a very good book called "Raising Your Child Without Milk" by Jane Zukin. This can be ordered at Barnes & Noble and at Waldenbooks. There is also a very good little book called "Don't Drink Your Milk" by Frank Oski (the head of Pediatrics at Johns Hopkins and author of "Essential Pediatrics.") This book cites the results of several research studies which conclude that milk is an inappropriate food for human children. It is available for $4.95 from Park City Press, PO Box 25, Glenwood Landing, NY 11547, ISBN #0671228048.

But if I take away milk, what will my child do for calcium?

Children between the ages of one and ten require 800-1000 mg of calcium/day. If the child drinks three 8-oz glasses of fortified rice, soy or potato milk per day, he would meet that requirement. If he drank one cup per day, the remaining 500 mg of additional calcium could be supplied with one of the many supplements available. Kirkman Labs (800-245-8282) makes flavored and flavorless calcium supplements in various forms. Custom-made calcium liquids can also be mixed up by compounding pharmacies using a maple, sucrose syrup, stevia or water base.

There are some very good calcium-enriched milk substitutes on the market. Rice Dream, in the white box, is usually available at the supermarket.

Is this diet expensive?

There is no denying that many of the gluten-free ingredients you will need to keep on hand are more costly than the staples you are used to buying. However, when you order by the case, the above milk substitutes cost about the same as cow's milk. Some parents report that their autistic children were drinking over a gallon of cow's milk per day (about $60/month!) but these same parents were reluctant to switch to rice milk at $1.30/quart.

As with all foods, convenience products such as frozen rice waffles are expensive, but making these from scratch is easy and inexpensive. Bulk rice flour is about 45¢ a pound, and there are several good gluten-free cookbooks. You'll find yourself making rice and potatoes more often, instead of ordering out. You might even save money.

What percentage of children will respond to dietary intervention?


DAN! docs used to try to be conservative about this, and say at least a third, and then, after seeing more patients, they said two thirds. Now that they have seen hundreds or thousands of patients, most tell us that they believe that almost every ASD child will benefit from this diet. Many will need further modifications ( i.e. removing grains or sugar) before the full benefits are realized.

However, age plays a big part in how quickly results will be seen. We can probably say that the response will be dramatic in more than two thirds of the children under three, and perhaps more subtle, but still helpful, in at least two thirds of older children. We think those are pretty good odds.
 


--
~Nate.

Thank You Jesus For my Little Boys

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The Stare! :)


Notice the way Kyle is staring, compared to his brother. This is atypical "autism stare." He gets into his own little world, so focusedthat his cute little face relaxes.
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California Reports: Autism Epidemic Rages On - 886 New Children in 91 days

     From California autism advocate Rick Rollens.

     According to information released last week by California's Department
of Developmental Services (DDS), during the 91 day period that was the first
quarter of 2007 (Q 1), 886 new children with a professional diagnosis of
full syndrome DSM IV autism, NOT including PDD, NOS, Asperger's Syndrome or
any other autism spectrum disorder were added to California's developmental
services system.
     There were a total of 1570 total new intakes during Q 1 2007 which
included children with autism, cerebral palsy, mental retardation, epilepsy,
and a myriad of rare genetic conditions such as Fragile X, Down's Syndrome,
etc. Of the 1570 total new intakes, 886 or 56% were full syndrome autism
cases. The 886 new intakes during that 91 day period represents the second
highest number of new intakes for a quarter reporting period in the 38 year
history of California's developmental services system. On average,
California is currently adding 10 new children a day, seven days a week with
full syndrome autism to its system.  In 1971, California included autism as
a qualifying condition to it's developmental services system. During the 16
year period from 1971 through 1987, California had a total caseload of
roughly 2700 persons with autism.
     During the past nine months alone, from July 2006 to April 2007,
California added roughly 2700 new cases. What use to take 16 years in
caseload growth now takes 9 months!    Twenty years ago in 1987 there were
2700 persons with autism in the system, today 20 years later, there are
nearly 34,000....92% born after 1980, 84% under the age of 21, and 78% under
the age of 18.
     We are still waiting for the missing 14,000+ adults with autism that
should be in our system if there has not been a real increase in autism to
show up now that we know what autism looks like (HaHa). Still no sign of
them. The fact is, they do not exist. In California's system today, less
then 2 out of 10 persons with autism are 22 years of age or older, the
remaining 8 1/2 out of 10 are between the ages of 3 and 21.

--
~Nate.

Monday, April 30, 2007

Diet

Today we're starting Kyle on a gluten free, casein free diet (GFCF). We've tried to slowly introduce this diet to him, but found that it hasn't worked well that way. So we're going cold turkey, so to speak. It will be difficult, but I've heard once you get used to it, the food is great and you prefer it anyways. Our whole family is switching over to the GFCF diet. I am networked with a bunch of families on a yahoo group for GFCF recipes. It's pretty cool what they come up with.

Temper tantrums here we come!!!! I call this "HELL WEEK." They've started already...

~Kyle's Daddy.

Sunday, April 29, 2007

Our Beautiful Boys

"Whoever receives one little child like this in My name receives Me" (Matthew 18:5 NKJV).

These are my beautiful boys, Isaac (left) & Kyle. Isaac was born on July 31, 2003 and Kyle on February 10, 2005.

I created this blog for friends and family to track Kyle's progress with his treatment for autism. I will post updates, autism research information, and health information. PLEASE comment, as this is a blog! :) May Kyle's walk with Autism be guided by the hands our Holy Father, crafting him according to His will.

God Loves You Kyle.. ~Daddy.

Understanding Kyle's Diagnosis

The following is a baseline rating for Kyle using the ATEC scoring system. As he responds to treatments, follow up scoring is done until the overall score is reduced. His current total score is 105. I hope you find this interesting.

Child's Name: Kyle Long***TOTAL AND SUBSCALE SCORES***Total Score: 105I. Speech/Language/Communication: 25II. Sociability: 31III. Sensory/Cognitive Awareness: 26IV. Health/Physical/Behavior: 23**I. Speech/Language/Communication1. Knows own name: Somewhat true2. Responds to `No' or `Stop': Somewhat true3. Can follow some commands: Somewhat true4. Can use one word at a time: Not true5. Can use 2 words at a time: Not true6. Can use 3 words at a time: Not true7. Knows 10 or more words: Not true8. Can use sentences with 4 or more words: Not true9. Explains what he/she wants: Not true10. Asks meaningful questions: Not true11. Speech tends to be meaningful/relevant: Not true12. Often uses several successive sentences: Not true13. Carries on fairly good conversation: Not true14. Has normal ability to com municate for his/her age: Not true**II. Sociability1. Seems to be in a shell - you cannot reach him/her: Very descriptive2. Ignores other people: Very descriptive3. Pays little or no attention when addressed: Very descriptive4. Uncooperative and resistant: Somewhat descriptive5. No eye contact: Very descriptive6. Prefers to be left alone: Very descriptive7. Shows no affection: Very descriptive8. Fails to greet parents: Very descriptive9. Avoids contact with others: Very descriptive10. Does not imitate: Somewhat descriptive11. Dislikes being held/cuddled: Somewhat descriptive12. Does not share or show: Very descriptive13. Does not wave `bye bye': Very descriptive14. Disagreeable/not compliant: Somewhat descriptive15. Temper tantrums: Somewhat descriptive16. Lacks friends/companions: Somewhat descriptive17. Rarely smiles: Very descriptive18. Insensitive to other's feelings: Somewhat descriptive19. Indifferent to being liked: Somewhat descriptive20. Indifferent if parent(s) leave: Somewhat descriptive**III. Sensory/Cognitive Awareness1. Responds to own name: Somewhat descriptive2. Responds to praise: Not descriptive3. Looks at people and animals: Somewhat descriptive4. Looks at pictures (and T.V.): Very descriptive5. Does drawing, coloring, art: Not descriptive6. Plays with toys appropriately: Somewhat descriptive7. Appropriate facial expression: Not descriptive8. Understands stories on T.V.: Not descriptive9. Understands explanations: Not descriptive10. Aware of environment: Somewhat descriptive11. Aware of danger: Somewhat descriptive12. Shows imagination: Somewhat descriptive13. Initiates activities: Not descriptive14. Dresses self: Not descriptive15. Curious, interested: Somewhat descriptive16. Venturesome - explores: Somewhat descriptive17. Tuned in - Not spacey: Not descriptive18. Looks where others are looking: Not descriptive**IV. Health/Physical/Behavior1. Bed-wetting: Not a Problem2. Wets pants/diapers: Not a Problem3. Soils pants/diapers: Not a Problem4. Diarrhea: Minor Problem5. Constipation: Minor Problem6. Sleep problems: Not a Problem7. Eats too much/too little: Minor Problem8. Extremely limited diet: Moderate Problem9. Hyperactive: Minor Problem10. Lethargic: Not a Problem11. Hits or injures self: Minor Problem12. Hits or injures others: Not a Problem13. Destructive: Minor Problem14. Sound-sensitive: Moderate Problem15. Anxious/fearful: Moderate Problem16. Unhappy/crying: Minor Problem17. Seizures: Not a Problem18. Obsessive speech: Minor Problem19. Rigid routines: Moderate Problem20. Shouts or screams: Minor Problem21. Demands sameness: Not a Problem22. Often agitated: Minor Problem23. Not sensitive to pain: Moderate Problem24. Hooked or fixated on certain objects/topics: Moderate Problem25. Repetitive movements: Minor Problem