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!

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..

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.

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.