Sibling Rivalry

Our first two children are 15 months apart and our next two are 17 months apart. Lately they fight more often than they get along and it breaks my heart. There is a lot of name calling, hitting, crying and competition. Anyone have ideas for building sibling relationships?

Congrats Brittany Recalde!

Utah - Walk Now for Autism Speaks
November Newsletter


Let's gear up for 2010!

The 2010 Walk Now for Autism Speaks website is officially up and running!

Register your team now and start fundraising TODAY!

www.walknowforautismspeaks.org/utah

With the holidays quickly approaching and the 2009 walk season coming to an end, we are reminded that autism never takes a break and neither can we. We must continue to fundraise for critical research, advocacy, family services and awareness. As you participate in your holiday gatherings and send out greeting cards, encourage others to help us reach the ultimate goal of finding out why autism is now affecting 1 in 91 children. Each new 2010 team that can raise $91.00 by Dec. 15th will be entered into a drawing for a gift basket of prizes! Thank you for your dedication to this important cause. With every dollar we are moving forward with your help!

The #1 reason people donate is because they are ASKED!

Click here to see how your fundraising dollars are being used to combat Autism!


December Committee Meeting - JOIN US!

Come join us as we work as a community to raise awareness in our neighborhoods, advocate with our local legislators, hear about others experiences, share current events and continue to plan and fundraise for our 2010 Walk Now for Autism Speaks! Everyone is welcome! This is a great opportunity to meet family members and friends of people living with Autism joining together for a common goal. See you there!

Tuesday, Dec. 8th @ 7-9 p.m.
Sanderson Center
5709 S. 1500 W.
Taylorsville, UT


We still need your help in 2009!


Committee openings: We have a place for everyone!

o Publicity: Do you like informing people of what the “happenings” are in their community? Are you talented at writing press releases and connecting with people about the AS mission? We are looking for someone that can help with spreading the word about Autism Speaks and our local walk. If you are interested please contact us!

o Sponsorship: Helping to secure donations from local area business both monetary and in-kind donations. We are looking for someone that is comfortable speaking with decision-makers and influencing them to partner with Utah Walk Now for Autism Speaks.

o Community Outreach: We are looking for someone that can reach out to our local schools to get them involved in our efforts to make our 2010 walk successful.

o Food & Beverage: Help to bring forward local area restaurants and vendors to provide food and beverage for the day of the event.

o If these committee positions aren’t what you are looking for please contact us to see what other ways you can help make the 2010 walk a success!!!

Sponsorship Spotlight: American United C.U. & Credit Union One

A big "THANKS" to everyone who participated in the American United FCU and Credit Union One Golf Tournament, raising over $8,000.00! Proceed from the tournament went to benefit Autism Speaks and 100% for Kids. A special thank you to Phil Patten who brought this opportunity to Autism Speaks!
The golf course has been scheduled and arrangements have been made to ensure that next year's event is even bigger and better! Contact us if you are interested in participating!

Congratulations to Brittany Recalde!

Brittany Recalde completed 26.2 miles in the NYC marathon to raise funds and awareness for Autism Speaks. Here are a few thoughts about her journey.


"Autism was so devastating to our family just three years ago. While I still find myself in tears that Mira is crippled by this disease, I have become a new person through this journey. I believe that Mira was sent to John and me for a reason. I’m sure that I don’t recognize every reason. But, I do believe that one of them was for me. A few years ago I learned that when someone died, the ancient Greeks used to talk about that persons passion in life. If that person had no passion, then they were not remembered. I remember when I heard that, I thought to myself that I didn’t really have passion for anything. That thought stayed with me for years. I worried that there would be nothing in this world that I would become passionate about. I never expected my passion to come from a disease that I have grown to hate. But it has. I have passion now.

Running a marathon in New York City was an experience that I could never ever put into words. I’ll try, but I will never do it justice. Never in my life have I heard my name yelled out in cheers constantly for hours. I heard “looking good Brittany” “keep going Brittany, you’re doing awesome” “let’s go Brittany”…. I heard it shouted from thousands of people that lined the streets. I heard it from loud speakers, I heard it from crowds on top of buildings and on balconies. I also had people yell to me that Autism Speaks was a great cause. I heard them thank me for fighting for our kids. I heard them say Mira’s name, and remind me to keep running for her (I had her picture and name on my back). I was brought to tears so many times when I saw the huge amount of support that was coming from perfect strangers.

I was inspired by so many that were also racing. I passed a member of our military with his full gear on. He was struggling just to stand after 15 miles. I passed so many grandparents in their 80s that were still running at the half way point. I passed a man that had no legs, only a prosthetic running leg and arm crutches. I passed multiple stroke victims. I was reminded how blessed we truly are. I have to give credit to my heavenly father for giving me the strength, mentally and physically, to be able to train for and finish this marathon. I don’t know where I would be in this life without my faith. I don’t believe that I could be so strong through these trials that I have faced without the Lord on my side.

The last four months have been an amazing experience for me. I have talked about Autism and Autism Speaks to more people than I think I have in the last three years. I was amazed at how little so many knew about autism. It was so interesting to me how many people were more interested in autism once they found out that I was willing to run a marathon to raise money for it. I am amazed at the generous donations that I received from so many. I’m so thankful for everyone who has shown such love for Mira and for our family. I feel so lucky and so blessed."

THANK YOU, Brittany by bringing much needed funds and awareness to so many through your journey!


We want to hear from YOU!

We would like to hear your feedback! If you have great fundraising ideas or would like to share your experience with autism and how it affects you or someone you love, please email utah@autismspeaks.org!

IEP Tomorrow

We have our son's IEP tomorrow to renew his goals for kindergarten and to be quite honest I am a little nervous. I really don't enjoy these and they never get any easier, no matter how many we go to! What are some suggestions you moms have? What are some good goals and activities to incorporate for an Asperger's child? Can we write the GFCF and sensory diet into his IEP?

Sure Sign Of Change

Today marked a huge step for us. We had five different families over to our house for play dates...ones that we did not arrange. Sure it was not perfect or without little tiffs but I could not be happier. I remember a time not so long ago when our children only played amongst themselves. I would arrange play dates and story groups hoping to integrate them and have positive social interactions. Inevitably someone would start hitting, tantrums or go on overload. So, today is a happy day!

Same Day Surgery at PCMC

After our last trip up to Primary Children's Hospital I thought it might be helpful to show other parents what to expect when going for same day surgery. I have documented most of our surgeries with photos over the years.

First you check into the Same Day surgery reception area where they give you a pager. Your children can play at a play area while you wait to check in at the registration. They take all of your personal and financial information as well as accept a co payment. Then you are given a wrist band and sticker with your childs' name on it. After checking with reception you wait to be seen by a pre-op nurse.

Your child's height and weight are measured, blood pressure and temperature taken, pulse, ears and chest checked. Your little one is changed into hospital backless gown and little booties. Then they determine if he or she is well enough to receive the procedure and you meet with anesthesiology.

You are transferred to another waiting area where you can meet with a child life specialist. They give you little doll to practice surgery on with an oxygen mask and syringe. Your child can also smell and choose their flavor of asnesthetic gas. Sometimes if they have separation anxiety the nurses will give your child some versed in the waiting area to relax them.

When it is your turn they wheel your baby back in a wagon and the anestheisologist disappears with your child behind closed doors. This is always the hardest part for me.

After they go into surgery, you go to the same day surgery waiting room. Where you wait (usually an hour in our case) before the doctor comes to talk to you about how things went. They take you into a private room to discuss the surgery and after care step by step.

Then one parent is allowed into the PICU, after surgery room. The child wakes up and may be very upset and crying. After about 20 minutes the other parent is let back into the after care room.

Your child is monitored to see if they can hold down fluids and not get sick. They also want to make sure they are not lethargic and wake up from anesthetic okay. The staff monitors vitals, gives pain medications and go over checking out. They may send you the the pharmacy to pick up a prescription and you sign discharge paper work. When the nurses feel it is okay they wheel your child in wagon or you can carry them out to the circle and you load into your car. I usually ist with my child in the back seat to make sure their head does not tip forward or they don't get car sick. PCMC will call you after a cpouple of days to make sure everything is okay and then you will see your surgeon in a couple of weeks to check the surgery site.

1 in 100

A study published today in the Journal of Pediatrics reports that autism prevalence is now 1 in 100, 1% of children ages 3-17. That's up from 1 in 150 reported in 2007.

You can read more about it in the Deseret News, Salt Lake Tribune, and CNN.

Please consider writing a letter to the editor of the Deseret News and/or Salt Lake Tribune. They need to hear from us and how this affects our families in Utah. Most legislators read the paper everyday. This is a fantastic way to reach them and let them know how important this issue is to our families. If you'd like, sign your name, then underneath write, "Utah Autism Coalition member."

Please also consider sending a copy to your legislators. If you're unsure of who they are, please visit Vote Smart.

Many thanks for all your help, support and passion. Let's stand together to ensure our voice is heard.

Best,

Leeann Whiffen
Brittany Recalde
Steve Michalski
Allan Wrubell

------------------------------------------

IN THE NEWS:

Matt McGhie, our tech chair, oversaw the design of our new logo! HUGE THANKS TO MATT! He's just about finished with our website, and we'll be unveiling that soon as well.

Spotlight on Autism Conference featuring speaker, Scott Bellini, PhD October 9-11 at the U of U Olpin Union Center. Sat. Tracks will include Financial Issues for Children and in Adulthood, Upcoming Legislation, Dealing with Law Enforcement, Research, Classroom Strategies, Spotlight on Therapies and More. For more information, please call Kim Moody at 801-661-9610

Utah FEAT presents "Introduction to Behavior Management" by Jeff Skibitsky, Clinical Director of Autism Behavior Treatment Center October 29, 7-8 p.m. located in the Carmen B. Pingree Center; Kiva Auditorium; 780 S. Guardsman Way; SLC.

Job Opening at Utah Parent Center:
TITLE: Parent Consultant Serving Parents of Children with Disabilities in Canyons School District.
LOCATION: Office in Canyons School District and/or Utah Parent Center Salt Lake Office (See address for UPC below)
JOB STATUS: Permanent, Part-time; 20 hours per week/40 per pay period with additional hours as needed
PAY RATE: $17.49/hour - includes benefit allotment
OPENING DATE: Wednesday, September 30, 2009
CLOSING DATE: Wednesday, October 14, 2009 or When Filled
For more information, please contact Jenny Gibson.

New gluten free grocery store in Layton

The Utah Autism Coalition is a parent-driven, grass roots advocacy group dedicated to supporting initiatives and other programs that enhance the lives of individuals with autism and their families.

GFCF at Costco

This week we went to Costco in an attempt to lower our grocery bill since going on a Gluten free Casein Free diet. The first thing we picked up was a 12 pack of Organic Soy milk. We go through so much milk around here that I am hoping this will last a little longer. Now that two of our children are school aged we are having troubled with them getting things at school that are not part of the diet. So, I am on a quest to find easily packable snack items.

We bought

• Peach and mandarin orange cups


• Craisins


• Veggie Crisps in the big bag (the little snack bags have wheat in them)


• Rice crackers by Rice Works


• Fruit leather by Stretch Island


• Fruit nuggets


• Edamame soy beans


• Organic apple slices


• Organic mini carrot bags


• Vitamin Juice Boxes

What do you pack in your kids lunches? How do you get the message to the teachers to PLEASE not feed them foods they can't have -Arrrg!

Hydrocele Surgery

On Tuesday we will be going into Primary Chidlren's for surgery on our sixteen month old little boy. I really am not ready to do this again, because he jsut had surgery about seven months ago, but I know it has to be done. About four months ago we noticed some swelling in his diaper area and took him to the pediatrician. He has what is called a hydrocele and his testivle has not dropped on one side.

Here is the Wikipedia definition for more information on his condition. A hydrocele denotes a pathological accumulation of serous fluid in a bodily cavity.

A hydrocele testis is the accumulation of fluids around a testicle, and is fairly common. A hydrocele testis is due to fluid secreted from a remnant piece of peritoneum wrapped around the testis, called the tunica vaginalis. It can be the result of cancer, trauma (such as a hernia), or orchitis, and can also occur in infants undergoing peritoneal dialysis. It may be treated surgically. Hydroceles are usually not painful (neither are testicular tumors) and a common way of diagnosing them is by attempting to shine a strong light through the enlarged testicle. A hydrocele will usually pass light, where a tumor will not, but the diagnosis should be made by a physician. It can also be noted as a minor malformation of newborns due to an increased maternal blood lead level during pregnancy.

Pray for us :)

Starting B-12 Injections

Yesterday we started B-12 injections with our son.  For the past few months he has been on supplements as prescribed by Dr. Humphreys of Pediatric Healing Solutions.  His supplements have included zinc, folacal, Child Essence multi-vitamin, a probiotic, and Omega-3 oil.  We are injecting 24 mg/ml every three days.  I am very curious ad excited to see how it goes.  He really hates shots and always have so we let him go to the dollar store and pick a small toy for each shot he gets.  It takes two people to restrain him and luckily we have a friend and nurse down the street to help administer them.  I have been researching today online and found this article most helpful in explaining how B-12 helps treat autism spectrum disorders.

TACA http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm

Compression Clothing Option

My son Caleb found an old wet suit today in his closet and he has been wearing it around all day. Wet suits are a great form of compression and proprioceptive input for sensory needs. I have a feeling now that he has discovered he loves it, we will see him in his shorty suit every day!

Major Break Throughs

Last night my son came in and gave me a kiss and said "Love you mommy." I feel like we have made some major progress since starting a gluten free casein free diet. We switched to GFCF back in March as well as supplements from our DAN doctor. While it hasn't been easy, it has been worth it. Our children re not as hyper, they are better able to focus and there is much less stimming. Yesterday our five year old son had a soccer game and he was able to track the ball and play at the same level as his peers YIPEEE!!!! Blessings!

Health-E Connections Newsletter

Financing a Wheelchair Accessible Van "101
"There are many things to consider when making your first purchase of a wheelchair accessible van. There are also thousands of different vendors out there from Florida to California. Read about some great pointers from a mother who has done all her homework on accessible vehicles and how to get one. Read more on page 1…

Pfizer Begins to Work on Drugs to Treat Autism
Reuters, July 10, 2009.
Pfizer, Inc., the world's largest drug maker, has begin developing treatments for autism. The company has formed a new, 14-member research group called the "Autism Spectrum Disorders" unit. Read more on page 2 …

Communication is Important for Children and Youth with Special Health Care Needs
This month's issue features some exciting articles about possibilities for communication for kids with disabilities. These devices could be used for children will all kinds of communication needs, even if it says they are for one specific disability. Utah Family Voices is dedicated to helping kids to communicate their needs, but Utah Family Voices does not recommend any one device or company. Family members are encouraged to get educated, ask lots of questions, and feel comfortable with their choices. Read more on page 3 …

DynaVox Device Provides a Voice for Area Boys with Autism
Lincoln Star Journal.
Holly Bailey dreamed of the day her son Kyle would say the words "I love you." So when therapists recommended Kyle use a touch-screen computer to communicate, his mother was heartbroken. In the year since Kyle, 9, starting using the DynaVox communication system, he is saying more than he ever has before, not only through the computer, but with his voice! Read more on page 3 …

iPods May Help Kids with Asperger's Navigate Life
Star Tribune.
A Minneapolis center is experimenting with the devices, and parents are hopeful. The iPod may have started out as a form of entertainment, but professionals believe that this kind of technology is turning into an "unexpected boon" for children and teenagers with special needs. The devices, it turns out, can be crammed with the kind of information they need to get through the day. Read more on page 5 …

Free Copy of Special Education Law and Children Who Stutter
Rocklin Today, Memphis, Tennessee.
At a time of spiraling health care costs, speech therapy is one free benefit many parents can appreciate. If your child stutters, they may be eligible for free speech therapy in school. Under federal law, public and private schools must provide special education services, such as speech therapy, to children. Read more on page 6 …

Making the Difficult Task of Transporting a Child with Special Needs Safer
Indianapolis.
Riley Hospital for Children and Indiana University School of Medicine study finds parents are doing well, but need help in using car seats correctly. The study offers advice on making transport safe for the child and less stressful for both the child and the parent. Read more on page 7 …

Check Out These Links!
Each month, Utah Family Voices provides families with a list of helpful web links that can assist in gathering useful and important information. Examples of this month's links include: Utah Clicks, Legislative Coalition for People with Disabilities, Open for Questions, and more! Read more on page 8 …

Autism ABCs
The Children's Center is pleased announce this family education series for families of children newly diagnosed with an Autism Spectrum Disorder. This six-week series will offer information about: caring for your family, understanding the autism diagnosis, dealing with behavioral challenges, communication issues, sensory issues, interventions, and resources and services. Classes begin on September 1, so register today! Read more on page 8 …

Current and Upcoming Events
The Utah Parent Center website has a lot of information on events that are happening in the disability community every week! New events are added all the time! Check out the list today! Visit www.utahparentcenter.org.

Search the Internet - Help the UPC and Utah Family Voices!What if the Utah Parent Center (UPC) earned a penny every time you searched the Internet or a percentage of your purchase at certain online vendors? Well, now we can!

GoodSearch.com is a new search engine that donates half its revenue - approximately a penny per search - to the charities its users designate. You use it just as you would any other search engine - and it's powered by Yahoo!, so you get great results! Just visit www.goodsearch.com to start searching and download their toolbar. Be sure to enter the Utah Parent Center as the charity you want to support! Just 500 of us searching four times a day will raise about $7,300 in a year without anyone spending a dime! Be sure to spread the word!

Utah Family Voices, the Utah Parent Center and CityDeals.comSpread the News! Help us raise money while you save!

What is CityDeals.Com? You can get gift cards, gift certificates, and vouchers for restaurants, stores, family recreation, and much more for a fraction of the cost! It's as easy as 1...2...3!!
Shop. Go to CityDeals.com and view over 300 restaurants, entertainment venues, travel destinations, and more. You will save up to 50% off retail prices! For example: You can purchase a $25 gift card to Chili's restaurant for only $22.51! Your transactions are completely secure and they offer a 100% money-back guarantee on every product they sell.
Enter. Before you check out, enter our special promotion code - UTPARENT - into the designated area in your shopping cart. You will receive your order by mail within 3 - 5 working days or you can pick up your order at one of multiple convenient locations.
Save. Save up to 50% on your purchase and our organization will receive 2% of all revenues generated from orders with our special code.

2290 East 4500 South, Suite 170, Salt Lake City, UT 84117 Phone: 801.272.1051 * Fax: 801.272.8907Toll Free: 800.468.1160 * Español: 801.272.1067

Autism Speaks Golf For Charity

Autism ABC's

Autism ABCs
A Family Education Series
for families of children newly diagnosed with an
Autism Spectrum Disorder

This six-week series will offer information about
· caring for your family
· understanding the autism spectrum diagnosis
· dealing with behavioral challenges
· communication issues
· sensory issues
· interventions
· resources and services

Participants will meet for two hours, once a week for six consecutive weeks Tuesdays, 09/01/09 – 10/06/09 from 5:30-7:30 P.M..
Cost is $25 (online registration, or $30 at the door).
Child care will be available; space is limited.

The series begins Tuesday, September 1 and space is limited. To register, please go to the Parent Resources tab at:
www.tccslc.org

The Children’s Center
350 South 400 East
Salt Lake City, UT 84111
(801) 582-5534

Toe Walking

I noticed my five year old son walking on his tip toes around the kitchen today. It's been quite a while since I have seen him do it and it broke me a little. It is so hard to see the subtle reminders every once in a while that fall within spectrum. I have never researched why children in the autism spectrum do it I just know they do. So I googled toe walking and found some info.

Here was the most concise explanation that I found
March 10, 2009 by Galen Gregory

Toe-walking is a behavior frequently displayed by people with autism spectrum disorders (ASD). No definite cause for this behavior has been determined, but several possible explanations have been proposed. Several treatment options have likewise suggested to address the various theoretical bases for toe-walking.A popular explanation for toe-walking behavior is that it is a sign of tactile hypersensitivity, which is common in folks with ASD. Finding tactile input to the sole of the foot aversive, the person reacts by trying to avoid contact with the walking surface as much as possible. It should be noted that toe-walking is more often observed when the person is barefoot. Treatment based on this theory is aimed at reducing the sensory hypersensitivity, usually by therapeutic brushing and graded desensitization to tactile input.A second theory is that toe-walking is an attempt to self-provide proprioceptive input. Proprioception is the unconscious awareness of body position in space, provided by receptors in muscles, tendons, and connective tissue when they are compressed or distracted. Since persons with ASD often have poor awareness of where their body is in space, the theory is that, by contracting the muscles and changing the position of the foot, the body receives extra proprioceptive input. In sensory integration theory, proprioception is also credited with being modulating, calming input, so people who toe-walk when excited may be attempting on an unconscious level to calm themselves. Treatment based on this theory would concentrate on providing the individual with proprioceptive input in other ways, such as jumping on a trampoline, stomping feet, walking in sand, providing traction, and other activities involving compression and traction.

Here is another intersting article http://www.autism.com/autism/physical/toewalk.htm

Utah Autism Coalition Seeks Committee Members

Dear Utah Autism Coalition members,

We keep growing in numbers, which means we're hopefully growing in impact for the benefit of families throughout Utah. Since the Utah Autism Coalition is run entirely by volunteers, its success will depend on the kind contributions made by so many of you. Our vision for the Utah Autism Coalition goes beyond Clay's Law, as we're currently looking into some special projects. Since the coalition is parent-driven with professional advisers, we're hoping to create an organization which will provide for an ongoing, seamless transfer of leadership. Many thanks to Scott Olsen, a grandparent and corporate attorney, who is helping us get organized.In an effort to organize the coalition, we've created committees, named committee chairs and established a professional advisory board. Thank you for all the notes to volunteer and recommendations for people to serve in these capacities. Please see below for brief descriptions.We're currently looking for committee members, and we could really use your help. Please email me if you see a good fit. (if you've sent me an email and you haven't heard back, take a look at the committees, and please email me again!) We need your help!
Best,
Leeann Whiffenleeannwhiffen@gmail.com

Mission Statement: initiating and supporting legislation and other programs that enhance the lives of individuals with autism and their families.

Leadership TeamLeeann Whiffen
Brittany Recalde
Steve Michalski
Allan Wrubell
Susan Selim

Recruitment Team Chair - Marla Valdez Finds opportunities to recruit more members of the UAC. Finds and registers for conferences and ensures staffing of booths. Contacts groups around the state that may offer more recruitment opportunities, i.e. PTA, Preschools, playgroups etc.

RESEARCH TEAM Chair - Geri Bohn Researches personal information about legislators. i.e: political contributions, kinds of bills legislators support, any family members with disabilities. Also researches other autism legislation around the country or any other needed information.

TECH TEAMChair - Matt McGhie Builds and maintains website. Currently working on logo and web launch.

DISTRICT CAPTAINChair - Allan WrubellCoordinates efforts of district captains and ensures there is a district captain for each senate and house district.

PUBLIC RELATIONSChair - Leeann Whiffen (LeeannWhiffen@gmail.com) I'm a temporary filler for this position. Please email me if you have PR experience.Maintains a relationship with media outlets. Ensures that they are well aware of any news regarding the UAC. Sends out press releases, etc.

FUNDRAISINGChair - Lisa Morrell Writes grants and seeks donations from companies and individuals to further the UAC's mission and funding for special projects.

SPECIAL PROJECTSChair - Shanda RossCurrently working on Project Lifesaver. Project Lifesaver is a program that supplies sheriff's departments with tracking devices and bracelets. It is given to those with autism and other cognitive disabilities who tend to wander and get lost. Collaborative effort with the National Autism Association (NAA).

OTHER Heather Gardner - photographer (www.heathergardnerphotography.blogspot.com)

Professional Advisory Board Paul Carbone, MDUniversity of UtahAssistant Professor of Pediatrics Pediatrician
Julien Smith, Ph.D Neuropsychologist Children's Neurodevelopmental Services, Inc.
Scott Olson, JD Attorney at Law
Judith Zimmerman, Ph.D Director Utah Registry Of Autism And Developmental Disabilities (URADD)University of Utah
Fraser Bullock Sorenson Capital, Managing Director Former CEO of the 2002 Olympic Winter Games

DAN Doctor Results

A couple of months ago we started a Gluten free Casein free diet and decided to go see Dr. Humphreys ND at Healing Solutions Pediatric Centers. A DAN! Dr. He saw both of our oldest and we only have money right now for the full testing on our son. The first test we did was a Metabolic Analysis Profile. The results showed low lactic acid, an elevated FlGLU or Formiminoglutamic Acid, and high glutaric acid. I am not a doctor so I am just trying to start researching what this all means and going over the lab results here are some explanations:

Low Lactic Acid or lactate: usually a result of reduced pyruvic acid
FlGlu: dietary deficiency of folic acid, severe oxidant stress, vitamin b12 deficient. Children with folate and or b12 deficiencies may be associated with autism, mental retardation, growth failure and seizure. This deficiency can be secondary to gastrointestinal disorders.
Glutaric Acid: associated with general neurological deterioration, spasicity and mental retardation, can lead to hypoglycemia, hypotonia, nausea, poor weight gain, poor weight gain.

The second test we did was a blood test. He ordered a comprehensive metabolic panel, iron binding, TSH CBC panel, strep test, copper serum, lead serum, zinc serum and DNASE. The potassium came back high, CO2 high, low ALT, high hemoglobin and hematocrit, and out of balance zinc. These lab results did not have an explanation attached but the Dr. explained that he may have an acidic gastrointestinal environment and an abnormality in the use of B12 which can lead to anemia. The copper to zinc ration in our system should be 1:1 and he is low on zinc which we will supplement with 30 mg. for 2- 3 months.

The regime to fix it all?
1) Diflucan or fluconazole for 10 days as well as a pro biotic called Maximum GI Health
2) Folic Acid- his need was a nine out of ten right now
3) Child Essence multi-vitamin one capsule a day for 1 week then go to two capsules a day
4) Omega 3's with super EFA (not Omegas 6 or 9)
5) Zinc 30 mg.
6) Go back in one month for B12 injections

In a nutshell...we have real results on paper. Something solid to look at which links with behaviors of autism and sensory integration. The methylation systemis not working properly, the GI has a bacterial issue and the folinic acid B12 is not converting the way it should to be available in his body. I am hopeful we will see results after treatment. We are open for ideas and thoughts...This is all new to me. I wish we had money to get our other chidlren tested. One step at a time.

Upcoming Utah Autism Events

Autism Acceleration Act

This week, Autism Speaks is launching a major ad campaign supporting federal autism insurance reform!

Our goal is to be the loudest group on Capitol Hill this week. To accomplish this, we have launched this ad campaign in various publications to raise awareness about the need for Congress to act on federal autism insurance reform and for members of Congress to become cosponsors of the Autism Treatment Acceleration Act (ATAA). A key provision of the ATAA requires insurance companies from coast to coast to provide coverage of medically necessary autism treatments, such as Applied Behavior Analysis (ABA) therapy.

We need your help to make sure this ad hits home for your federal legislators! Help us make sure that they see this ad over and over again and hear from families and friends of families affected by autism each day this week!

Here is How YOU Can Help:1. Please download and print out a copy of the Autism Speaks ATAA ad HERE!2. Fax a copy of the ad to your federal Senators and House representative!After printing out a copy of our ad, find a good spot on the ad itself, or on a separate sheet of paper, to write a short personal message asking your Senators and House Representative to cosponsor this bill, be sure to include the bill number - S.819 in the Senate and H.R. 2413 in the House.Fax to our federal legislators at the fax numbers below:Sen. Orrin Hatch - (202) 224-6331Sen. Robert Bennett - (202) 228-1168Rep. Jim Matheson - (202) 225-5638 District MapRep. Rob Bishop - (202) 225-5857 District MapRep. Jason Chaffetz - (202) 225-5629 District Map3. Follow up with a phone call to our federal legislators!Sen. Orrin Hatch Phone: (202) 224-5251Sen. Robert Bennett Phone: (202) 224-5444Rep. Jim Matheson Phone: (202) 225-3011 District MapRep. Rob Bishop Phone: (202) 225-0453 District MapRep. Jason Chaffetz Phone: (202) 225-7751 District Map

If you aren't sure of what to say when you call, say this:"Hi. My name is ________________. I am your constituent and live in (City, STATE). I am calling to be sure that you received a copy of the advertisement that I faxed to your office regarding the Autism Treatment Acceleration Act. I would like Senator/Congressman (Name) to cosponsor this important piece of legislation. The bill number is S. 819 (if you are calling a Senator) or H.R. 2413 (if you are calling a House Representative). Thank you so much. I will keep checking back to see if he/she has signed on because this is very important to me."4. Forward this to 20 people and ask them to do the same thing! They do not have to have a child with autism. Post on message boards in your state or forward to coworkers, neighbors, friends and family and ask them to help you help your child by pressing for appropriate insurance coverage for the premiums you pay! Spread the word, get people involved and watch your politicians really start to sign up to help!For more information on the Autism Treatment Acceleration Act, visit www.autismvotes.org/ATAA.

To continue receiving alerts about this issue and other pertinent issues in your state, register at www.autismvotes.org! Working together they will hear our community. Working together, we make autism insurance discrimination a thing of the past!

oH

That we could have one of these in our backyard! Every spinners dreams. I could not get my kiddos off of it yesterday. And as for occupational therapy...enroll your kiddos in gymnastics. They are loving it! The jumping, the obstacle courses, the foam pit, the crash pads and learning to sit on their star. Wish we would have started a couple of years ago. But here's for long hours at the gym and on a merry-go-round!

Lessons of the Last Few Weeks

We have learned and re-learned some very important things over the past couple of weeks. First and foremost, a lot of you have asked about how the GFCF diet is going and if we think it works. Most definitely! I have seen a significant decrease in stimming and hyperactivity in all of my children.

Last weekend they had some lactose free (which are not casein free foods) and MAN oh MAN did we have a rough next few days. Out of control children with gassy tummies. I have also noticed that artificial colorings in their Popsicles and Trix cereal seem to be the culprit of hyper behaviors as well. I think I will try to cut out all artificial colors and sweeteners to see what happens.

We have hit some hard time since the routine of school let out. I am thinking I should have requested extended school year services or ESY.

Two of our children went to see the EMT to get their tubes checked. He though he would attempt to remove the tubes sitting in the canal ready to fall out. BAD PLAN. We will never try that again. It sounded like a murder scene in his office. Our youngest daughter failed her hearing screen and tympanogram so we check back in three months and I am predicting her third surgery.

Yesterday I sent my husband to do our son's blood draw for the DAN doctor at Primary Children's Hospital. I think it is the best place to go for everything if you have special needs children in Utah. It took four of them to hold him, but he also had a child life specialist and social worker there as well as a toy treasure chest when he was done. We are looking for metals in his system as well as deficiecies and allergies. We know he was exposed to lead for sure...we shall see!

That's our world in a nut shell. I am looking for other moms here in our State to meet and swap ideas with. We want to get hooked up with more summer activities and a hippo therapy program. Let us know if you know of any good summer programs or scholaships. So far so good on swimming and gymnastics! The local puppet shows at the library, not so good...Mr. Puppeteer got a couple of hits on the head and the crowd is too much. You live and you learn!

Free School Lunch

Summer time is here and many of the school districts will offer a sumer lunch program.  We went today to our local elementary and it was a big sack of food. They served a corn dog, raisins, chips, milk, cookie, and apple slices.  Granted for our GFCF children we had to make few accomodations but all in all it was well worth it.  I think we will go back every day.  Adults were $2.70 and you have to eat the whole lunch on site.  If you live in Davis County here are the locations. Check for a program near you!

Crestview Elementary

South Park Bowery

Fremont Elementary

Wasatch Elementary

Washington Elementary

Whitesides Elementary

North Davis Jr High

Lunch is served Monday through Friday from 11:30-12:30.  Enjoy saving a little time and money this summer!

Spectrum Hope

While searching for a GFCF meat loaf this morning I stumbled upon this blog site...http://spectrumhope.blogspot.com/

There are some great recipes there as well as the TACA site http://www.talkaboutcuringautism.org/faq-recipes/index.html

Enjoy!!! Man I wish we had a Trader Joe's grocery store here in Utah. We ran our of their pancake/ waffle mix today and they don't ship! :(

Great Website

I can't afford to buy the Boardmaker software and I find it VERY difficult to take Marshall to the Early Intervention Library so I have been scouring the internet for some pictures. I talked to his OT about social stories and she gave me some handouts. One of the websites on the list was called, Speaking of Speech. I printed a ton of stuff today. We're on to something here...

We're also very frustrated!! We were told that Marshall will no longer be in the Special Ed program. Apparently, he is great at school but a total nightmare at home.

Social Story and Schedule

I'm looking for advice on getting a schedule set up for Marshall, my 4 yr old son. I also need to do a social story for riding in the car. That's just my starting place. Any ideas for me?

Utah Walk Now For Autism

Congrats and thanks to all who participated despite the rain! What a great event. Welcome to all of the new providers we met today.

In-Home Program

The last two weeks our family has been working three hours three days a week with an in-home worker. There have been some rough times as we all try to adjust to new structure and rules. We spent about two hours in time out with my son scratching and hitting until he could calm down his body enough to not hurt someone, use his words and talk. The next day it was my oldest daughter's turn to test limits. So not fun, but it has been well worth it to see the improvements in their behaviors. We are also using charts to map good and bad choices as well as "better ways to handle" things.

Here are some of the sensory activities we have been doing:

• rubbing their backs and feet to wake them up


• pushing them to do more physical activity, if they would do five jumps on the trampoline, push them to do ten


• use the body sock


• bounce up and down on a theraball


• use varied textured sponges when bathing


• use the towel like a thera brush when drying them off


• wrap them and squeeze them in the towel


• lotion their arms and legs


• count while brushing their hair


• have them brush their tongue with their toothbrush back to front


• do joint compressions right before getting dressed


• when they get home from school stroke their arms with a sponge or wash cloth and repeat joint compressions


• introduce feathering on their skin, harder to lighter touch on their cheeks, arms but not their tummy

Some of the other tips we have gotten from our worker Lori: avoid artificial food colorings as they increase pulse and heart rate. Look into food allergies. (We are on a GFCF diet) Check out the National Abilities center, autism now and autism speaks websites.

Subtypes of Asperger's

My husband and I are reading the book "Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills".

It is very helpful to find a book that doesn't treat ALL kids with Asperger's the same. Kids are all unique and this book goes though Subtypes of Asperger's. After reading through the list of subtypes with examples, we have come to the conclusion that my husband is Logic Boy. The book says:

"Logic Boy (or girl) needs to know the reasons for the rules before he is okay. Blindy accepting your rules is not the way he operates. He wants to know the reasons behind your actions, why something is a certain way, and it has to make sense to him."

After the desription (which is longer than what I just posted), there is a section that says, "Recommended Approach". It gives you ideas on how to be able to teach that child appropriate behaviors. We learned that Marshall (who is 4 1/2) is an Emotion Boy.

"This is the most difficult type to deal with because rules and reasons mean much less to him or her. Many of the Asperger children fall into one of the emotion types. Their emotions control their behaviors. If you do not recognize and deal with their emotions, your success is diminished. This group has many more tantrums, is less available, easily disengages, or is more prone to acting out. Those dealing with Emotion Boy can often find themselves in a state of frustration at best and a crisis state at worst. "

We are in crisis mode now. Marshall can not be allowed to play outside now without complete adult supervision, even in our fenced in backyard. He disappears and we find him at the neighbor's house asking if the kids can play, when they are at school, or the younger ones are napping. Our downstairs neighbor has to keep her door locked at all times because he just walks in. He also took his brother's boat that he was building with Dad for Cub Scouts. I specifically told Marshall that he was NOT allowed inside the garage AT ALL. He took the boat while I was making dinner and lost it. Poor Nate (he is 10) was so upset. I asked Marshall where the boat is and all I get is a blank stare. As we were looking for it, he said, "Maybe it flew up to the mountain." Ugh! The biggest problem is that we are going out of town tomorrow and Nate and Daddy don't have time to make another Raingutter Regatta boat before our race. We get back from this trip next Wednesday and then my husband is going to Spain on Sunday and won't be back until after the race.

It was so interesting to read something that so clearly defined our boy. Under Emotion Boy, there are sub-categories. They are Paranoid Boy, Predominately ADHD, Predominately OCD, and Predominately Fantasy. Our Emotion Boy is Predoniately Fantasy. He talks about his computer or Playstation games ALL THE TIME! He is almost ALWAYS Batman or Spiderman. He wears his cape and mask almost all the time too. When he plays, it's always playing what his game was, whether it be Disney's Toontown Online, or Lego Star Wars, or Lego Batman.

I just wanted to share what I have just learned. It's so interesting. I can't wait to be able to finish reading this so we can learn to help Marshall. Hopefully then we won't be in crisis mode so much. The good news is: GRANDMA is coming and she is a great help with him. I need to be able to get ready for the trip so I'm grateful she is coming today.

Stemming

I'm sad today. I feel like I'm going crazy sometimes in my attempt to prove to the world that my son has Autism. I go back and forth between convinced he has Autism and really unsure. We still have no official diagnosis. When do I push for this? It drive me insane!!! I can't tell you how many times I hear, "He can't be autistic! He communicates so well!"

Over the last month or so, Marshall has been shaking his hands. He used to only do it when he was frustrated and couldn't remember what he wanted to say. Now he does it ALL the time! He holds his hands up at about shoulder height and shakes them out to the side of his body. He does it more while jumping or taking big steps around. I don't know why he does it. It must be a form of stimulation. His OT is trying to figure out what what he needs to compensate for. When my friend asked him why he does it, he said to get the itch off. She asked him where the itch is and he rubbed his hand over the back of his neck and shoulders and arms, and front as he showed her where it itches.

This week, 2 grown men have mimicked Marshall and I do not find it funny at all! Our downstairs neighbor did it right back at him as Marshall was saying that he had been waiting a billion hours for them to come outside. Then yesterday, Marshall was jumping and flapping his hands, and the guy whose kids I babysit shook his hands out exactly the way Marshall does. He said, "Hey Marshall!" and then flapped his hands. I don't find it funny. I don't know why they would do that. It just makes me sad.

One more thing... we have great news! The BEST NEWS IS: MARSHALL SLEPT THROUGH THE NIGHT FOR 2 WEEKS NOW!!!!!!!!! I'm so happy!

I'm new here

Hi! I am a new contributor on this blog. I have been following it for awhile now, but wanted to ask some questions... so here I am!

My oldest son just turned 7. He was diagnosed with autism right before he turned 4. He has been in therapy since he was 18 months old. He attended the Northern Utah Autism Program the year before Kindergarton. He attended Alternative Kindergarton at Canyon View Elementary and is currently at our home school, H. Guy Child in a Language Enhanced program. He has done remarkably well up until this past school year. We have been going downhill slowly all year, but the last couple months have just been frustrating. He has shown aggressive behaviors at school that he hadn't in the past, he has been having a really hard time staying on task and not completing his work. Next week is our meeting to determine his placement for next school year. I have this stong feeling they are going to want to mainstream him into a second grade class with some sort of support. What support they will suggest I have no idea. We live in Weber County and I am wondering if anyone else does, and if so... what options do you know about? We have to go in there with an idea of what we want, but as usual they don't tell us all our options. We always have to ask to be put into the special programs he is in. This year we don't know what there is out there besides putting him in a regular classroom with an aide. I don't think that is the right answer, he needs more time with a smaller class setting. So I am trying to get some ideas of what we can ask about. I would appreciate any help we can get!

Online Charity Auction

I want to share this opportunity with all my friends & family!!

PLEASE VISIT www.rally4riley.blogspot.com today!

Auction ends next Monday!!

Many teams participating in the Walk Now For Autism in Utah have recieved some fabulous donations that are now available to bid for in an online auction!

If you need or want anything from great books, CDs & DVDs, car washes, gift cards to restaraunts, massages, yoga classes, Caterpillar toys and memoribilia, even furnature & a cruise!! You can get some really killer deals and all proceeds go to various Walk Teams for Autism Speaks!! Please take just a minute to look at the things that are available and SHARE THIS WITH A FRIEND!!

Thank you so much for all your support!

Calleen KenneyCommunity Outreach Chair

Walk Now for Autism - Utah 2009

www.autismspeaks.orgwww.walknowforautism.org/utah

Team Miles 4 Maia

From the Association for Behavioral Analysis International

I thought you might find information related to autism provided by Association for Behavior Analysis International’s (ABAI) useful to your readers and/or yourself.

The Association for Behavior Analysis International (ABAI) is hosting its 35th Annual Convention from Friday, May 22 to Tuesday, May 26, in Phoenix. Of the numerous presentations throughout the convention, a large number of them will focus on autism, the fastest-growing developmental disability in the United States . Below is a brief overview of the components of the conference.

The convention, which will be held at the Phoenix Convention Center , is expected to attract approximately 4,000 attendees from across the globe. Hundreds of experts will present resources and information that parents, teachers and therapists can use to improve the lives of those living with Autism Spectrum Disorder. Presentations will focus on a variety of topics including:

Evaluating the interventions available for children with autism and the importance of evidenced based treatment.
Moving beyond imitation to observational learning for children with ASD
Combating common sources of stress among parents of children with ASD

I hope that you would be interested posting this information about the conference on your blog. I'd be happy to send you additional information about the speakers and the conference if you would like. Please feel free to visit https://host.mailbcc.com/exchweb/bin/redir.asp?URL=http://www.abainternational.org.

Thank you,

Lauren Cushing
The Association for Behavior Analysis International
abainternational.org
The McRae Agency
P: 619.291.1234

Kindergarten Round Up

My son and I went to the local elementary school today for kindergarten registration. He started attending the Children's Center therapeutic pre-school two years ago. After graduating from there he continued on to a local school on an IEP. He has experience with three different teachers and classrooms as well as riding the bus. I was interested to see how he would do.

When we first got there he had a piece of theraband to chew on and he sat through the little slide show. I took his hand and we went on a tour of the classrooms. The first is his sister's current teacher and room so I pointed to the pictures of her on the walls. I introduced him to the teacher and she was animated/ excited to meet him. He buried his head in my chest and wouldn't look at her. He didn't respond to any of her questions. So we moved on and I squeezed his hand a couple time to see if he would squeeze back. Sometimes I learn more from my children non-verbally. He gave me two tight squeezes and then after a sea of faces we knew from our neighborhood he said "home." He just kept repeating it a couple of time"home..." We left out the side door away from the crowd. I hope he will not fall through the cracks next year in a bigger class. A part of me was a little sad. He has an IEP in place so here's to hoping he opens up once he feels more comfortable.

We handed in our registration forms and I had the immunizations in hand. this is the first time we are marking "exempt" on the form. He has been on a regular immunization schedule up to this point but now that we know he is on the autism spectrum I am not continuing on. This is a new adventure for us. I expect we will get some nasty letters in the mail from the health department.

Does anyone out there have experience with this?

I hope he will have good friends and will work past the anxiety.

Social Communication Skills Workshop

The Autism Council of Utah and the Utah Parent Center would like you to know about this free seminar on Assessment and Intervention Strategies for Supporting Children’s Social Communication Skills. Anyone who is interested is welcome to attend. SLP’s can earn .5 credits for attending the full day on May 15, 2009. The Seminar will be presented by Dr. Geralyn R. Timler, Assistant Professor at the University of Buffalo, and will be sponsored by the BYU Department of Communication Disorders, The David O. McKay School of Education, and Brigham Young University. Please see the attached flyer and registration form for more information.

Please forward this information to anyone who might be interested.

Utah Parent Center Information DisclaimerUtah Parent Center - Celebrating OVER 25 years of service!!!

Utah Family Voices - Family to Family Health Information CenterAutism Information Resources at the Utah Parent CenterFamily to Family Network - A Program of the DHS/DSPDPhone: (801)272.1051 - Toll Free Utah: (800)468.1160 - Fax: (801)272.8907

Email: upcinfo@utahparentcenter.org -

Website: www.utahparentcenter.org

2290 East 4500 South Suite 110, Salt Lake City, UT 84117

Our Mission: To help parents help their children with disabilities to live included, productive lives as members of the community. We accomplish this through the provision of information, training, and peer support.

Today Is World Autism Awareness Day!

Dear Autism Advocates,
Today is World Autism Awareness Day. Please take a moment today to make legislators aware of our need for Autism Insurance Reform. President Obama drafted legislation before the election that would require health insurance coverage for autism treatments. Today, that legislation was introduced into the US Senate. I will be including a brief article below with more information about it. You can take action and contact your US legislators by going here to send your legislator an email asking for their support: http://www.autismvotes.org/c.frKNI3PCImE/b.5065905/k.BCED/Take_Action_on_the_ATAA_Bill/siteapps/advocacy/ActionItem.aspx

Also, below the article is an letter to you from your Autism Speaks Walk Chair - Tricia Nelson. Please support the Autism Speaks Walk by forming a team or joining a team. Autism Speaks is the main supporter of Autism Insurance Reform around the country. Funds raised at the walk help pay for the lobby efforts to gain insurance coverage for our children.

Happy Advocating!!!

Brittany Recalde
Leeann Whiffen
Steve Michalski
Utah Autism Coalition


Autism Treatment Acceleration Act of 2009 - Federal Autism Insurance Reform
In his Presidential campaign statement on Autism Spectrum Disorders, then-Senator Barack Obama committed to bringing autism insurance reform to our entire nation. His statement put forth that Obama and Biden "will mandate insurance coverage of autism treatment and will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD."

In an effort to put his words into action President Obama has asked Illinois Senate colleague Senator Richard Durbin (D-IL), along with Senator Robert Casey (D-PA) and Senator Robert Menendez (D-NJ) to introduce comprehensive autism legislation, including a section addressing broad based federal autism insurance reform. The legislation, entitled the “Autism Treatment Acceleration Act of 2009” (ATAA) contains a total of twelve sections, each putting forth a different program for autism. A key feature of the bill is Section 12, which contains the provisions for federal reform of autism insurance coverage. If passed, Section 12 will require all insurance companies across the country to provide coverage for evidence-based, medically-necessary autism treatments and therapies.
The Autism Treatment Acceleration Act

Dear Parents,
As you may know, autism is a serious developmental disability that affects 1 in 133 children in Utah, making it more common than pediatric cancer, diabetes, and AIDS combined. Autism is a spectrum disorder that can range from very mild to quite severe. If your child is diagnosed with autism, early intervention is critical to gain the maximum benefit from existing therapies.
Autism Speaks is a national non-profit organization that is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Utah is participating in the 2nd annual Walk Now for Autism in Utah on May 2nd at Utah Valley University in Orem. Autism Speaks’ Walk Now for Autism, the nation’s largest grassroots autism walk program, is our signature fundraising and awareness event.
Powered by volunteers and families with loved ones on the autism spectrum, this successful grassroots fundraising effort not only generates vital funds for autism research, but also raises awareness about the increasing prevalence of autism and the need for increased research funding to combat this complex disorder.

Bring your family, friends and neighbors and join us for this family-friendly event! We will have activities for children, bounce houses, clowns, entertainment and much more. Sign up atwww.walknowforautism.org/utah and create a team. Your team can not only raise vital funds for autism research, but gain much needed awareness in the community.

Please feel free to contact me with any questions!
Tricia Nelson or Becky Brady (801)224-5127
Walk Now for Autism – 2009 Chair School Outreach Chair
http://us.mc01g.mail.yahoo.com/mc/compose?to=jasonandtricia@hotmail.com
http://www.walknowforautism.org/utah
http://www.autismspeaks.org/

Fun With IEP's

I went to an IEP meeting today for one of our children and would love some suggestions.  My children are ages pre-school through K and are gifted in verbal skills and cognition. But, we need help with adaptive and social skills.  Any of you moms have good resources, websites, or books for this? We are specifically seeking information on interventions for hyperactivity, sensory seeking and anxiety as well.  THANKS!

Tips for Teaching and Parenting Special Needs

I helped teach and inservice to all of our church Primary instructors today and the other woman who presented gave a lot of wonderful suggestions.  She is a Special Ed teacher.  I found all of the suggestions very helpful to remember. Thanks to Jennifer Tanner, Woods Cross High School!

• use pictures, written or display options, don;t rely on the auditory sense
• provide cues in advance for important information
• provide cues for starting and ending a task
• provide movement
• set clear expectations
• limit steps to three at a time in instructions
• take crayons and distracting materials when finished using them
• provide lots of creativity and variation within a set structure
• use positive language
• provide think time
• pause to create suspense
• change your tone of voice, whisper
• provide second chances
• catch people doing good
• recognize signs of distress
• recognize need for fidgeting
• provide time for hands on activities
• emphasize and find the similarities between you and the child
• break tasks down to smaller steps

When you are losing them

• realize a child acts out because their needs are not being met, they are in distress
• change it up , do things differently
• re arrange the environment
• remove unnecessary requests
• move closer or father away
• use humor
• ask a simple question, one that is unrelated
• listen
• offer support
• use the words "I noticed..."

Inspiring Promotional Video

GFCF (gluten free casein free) Week Two

We have had lots of GFCF food questions this week. It's been a week of cravings for our children.

With two birthdays I really needed some good ideas on cake mixes and frosting that are GFCF. Here's what other moms who know sent me:

Cherrybrook.

http://www.cherrybrookkitchen.com/products/gf_choccake.php

Yahoo group: http://health.groups.yahoo.com/group/GFCFKids/

I will go there and just search to see if anyone has info about specific foods, ingredients or supplements.

Taca: http://gfcf-diet.talkaboutcuringautism.org/index.html

I think they have the most extensive, real world information about GFCF.....There are a lot of links on the left hand side that can help for many situations.

http://stewartdehart.stores.yahoo.net/item1.html

When I first started I ordered some of the packages from this website. They sent me a bunch of GFCF items to help out with finding out what is out there.

I go up to Blue Chip Group. They have a lot of premade mixes... plus you can get GF flour for the best price around. I just bought a few 25lb bags and canned it for my food storage. You have to check the ingredients for their mixes, because they aren't all CF. 

http://www.glutenfreebcg.com

I went to World Food Market (formerly Wild Oats) in Salt Lake City and found they had a huge GFCF cooking section. We settled for their generic brand cake mix and Cherrybrook icing. My kids and husband loved it and couldn't tell the difference.

My other question is about salad dressings. Does anyone know of any other GFCF dressings for salad or croutons that are GFCF? My son is going through cravings. One mom forwarded me this link

SaladDressing 

http://www.talkaboutcuringautism.org/faq-recipes/dressingssalad_1.html#06053661

And lastly, where is the GFCF candy and Chocolate?! 

One suggestion for Easter was sent to me by amazing mom Brittney...Check Kim Stagliano's blog linked to the right or the site  http://www.choclat.com/

 They have GFCF chocolate and candy for all major holidays. I just put in my Easter order for chocolate bunnies and all.

Any other candy ideas?

Thanks!

A Child's Journey Out Of Autism

This book is in my mind a must read for parents of children of the autism spectrum and others who love them. It is a deeply personal account of Leann and Clay's journey from diagnosis to recovery. It gives moms hope that one day their child will be healed. I found myself crying many times as I recognized the signs and symptoms we missed because we didn't know what to look for. And, I shed tears of joy as I realized that a normal life is possible for each autistic child. Leeann is amazing and has done much to further awareness of biomedical techniques for curing autism. She is the mother of three boys and an advocate for Utah mothers. Leanne is also one of the founders of the Utah Autism Coalition. I feel it is a blessing that our life's paths crossed. Read and enjoy!

The Age of Autism is doing a book giveaway this week. Check it out and win a free book.

From the publisher:

Told with the intensity of a medical thriller, the extraordinary story of how Clay Whiffen and his family conquered autism.

When Clay Whiffen was diagnosed on the autism spectrum, his parents didn't know where to turn. They refused to believe that he could not be cured, and began to try every therapy they could afford - and many they couldn't.

Frantically they worked, knowing that Clay slipped further away every day. When intensive medical testing revealed that Clay no longer fit the criteria for any condition on the autism spectrum, the Whiffens' wildest dreams were realized. Clay had conquered autism.

Written by Clay's mother, with a foreword by autism specialist Dr. Bryan Jepson, A Child's Journey out of Autism spells out what treatments worked, where the family found help, and how they made it through this crushing crisis. In a time of despair and confusion - when another child is diagnosed with autism every 20 minutes - this is a profound, proven message of hope for anyone whose life is touched by the disorder.

PRAISE FOR A CHILD'S JOURNEY OUT OF AUTISM

"Leeann Whiffen's fight for her son is a poignant, intimate story of perseverance and love - a reminder to all of us that a mother is the greatest ally a child with autism will ever have. A Child's Journey out of Autism shines a heartfelt light on a future of healing and hope."
Jenny McCarthy, author of Mother Warriors and Louder than Words

"I have heard so many stories like Clay's that I thought I could no longer be moved by them; I was wrong. This is an important book to read if your family has not been touched by autism, because it's important to understand the disorder that has affected so many all over the world. If someone you love is on the autism spectrum, read it because it will allow you to see that autism is treatable. While not all children make a complete recovery, improvements in their quality of life are possible at any age. I strongly recommend this moving and intelligent book."
Jane Johnson, Executive Director, Defeat Autism Now!

"This uplifting and positive book gives parents of newly-diagnosed children hope for the future. There is no easy fix or magic bullet for recovering a child from autism, but as Leeann so skillfully shows us, with perseverance and determination, the possibilities and rewards are endless. Thank you, Leeann, for sharing your story and empowering parents to make that journey to rediscover their child."
Chantal Sicile-Kira, author of Autism Life Skills, Adolescents on the Autism Spectrum, and Autism Spectrum Disorders.

"Leeann Whiffen takes the reader onto the rollercoaster ride that is autism from the first chapter to the last. A Child's Journey Out of Autism is field guide on how an average family can grow in love as they take on autism, refusing to accept the mainstream doom and gloom pronouncement that there is no hope or treatment. This is an important, really powerful book. If you know a child with autism, read this book for them."
Kim Stagliano, Managing Editor, Age of Autism, and mother of three girls with autism

"The journey from diagnosis to recovery is filled with obstacles and setbacks. The financial and emotional burdens families endure are heartbreaking. Yet, like the Whiffen family demonstrates, there is power in hope and determination. Parents like Leeann and Sean demonstrate that autism doesn't have to be a lifelong struggle… With effective treatments, a supportive network, and unwavering parents, recovery is indeed possible… Leeann's determination, drive, and hope are inspirational. Her story is unique, yet it mirrors what so many families encounter, the stress of inadequate funding options, the frustration of misdiagnosis, the confusion associated with learning about the best treatments. Her ability to tell her story with heart mixed with concrete information will no doubt help many families."
Doreen Granpeesheh, PhD, BCBA, founder and executive director, The Center for Autism & Related Disorders, Inc. (CARD)

"The Autism club is not one that we choose to join. Sadly, many of us are welcomed to this club by medical professionals who offer little hope for our children. But as the Whiffen family and thousands of others have discovered, our children can get better and in many cases, even recover from Autism. In A Child's Journey out of Autism, Leeann Whiffen welcomes us to the club with the gift of hope. This book is a must-read for parents with a newly diagnosed child with autism."
Wendy Fournier, president, National Autism Association

PRAISE FROM THE BOOK BLOGGING COMMUNITY:

A Child's Journey out of Autism is a story filled with hope… the Whiffen's story highlights what is possible with early diagnosis and consistent treatment.
http://ShhhImReading.blogpost.com/

It reinforces my idea that each family needs to make the decisions that are right for their child--find what works for him or her… [B]ooks like this, which both describe the symptoms of Autism and record the path to recovery, are desperately needed.http://CorrinesBookReviews.blogspot.com/

I can only say that, whether or not you or anyone you know has been affected by this tragic disorder, you will not regret reading this extraordinary, inspiring and moving book.
http://HarrietDevine.typepad.com/

This book… should be read by every parent, not only the ones with autistic children. It is a story of how to appreciate every little thing about our children, how to love them fully and unconditionally. It is a story of perseverance in the face of biggest despair, of determination to never give up, even if we are told that that’s precisely what we should do.
http://Lilly-ReadingExtravaganza.blogspot.com/

I think that any mother could enjoy this story of a mother's love and determination to help her child. For me personally, it also helped me to appreciate what I do have; a beautiful loving child who can communicate through some sign language and who loves to give everyone hugs and kisses.
http://GoodCleanReads.blogspot.com/

The determination that Leeann and her husband Sean put forth throughout this trying time is well documented and will be an inspiration for any parents, grandparents, caregivers and teachers who have an autistic child in their care. This story is not only inspiring for those who are caring for an autistic child but it would also be inspiring for anyone who has a loved one struggling with an illness of any sort by providing hope through means of determination. http://KatiesLiteratureLounge.com/

I was impressed with her openness in the book. How can we help to inspire and encourage others if we are not honest with our own emotions: the positive and negative. Whiffen does not appear to try and whitewash herself, which is why I think this book is so powerful.http://BookThoughtsByLisa.blogspot.com/

This was a touching memoir that worked for me on a lot of levels. Whether or not you have someone with autism in your family, know someone who has it or are just curious there is a lot of information that is presented in a way that is compelling and readily absorbed.http://LinussBlanket.blogspot.com/]

Compression Clothing for Autism and Sensory Needs

I had this forwarded to me this week by a fun friend...Check out Compression Clothing LLC

We're glad you're here! Nearly by accident, we recently discovered that children on the Autism Spectrum receive great benefit by wearing our specialized compression clothing. The results were amazing! This includes children at many different levels of the Spectrum, not just those with sensory or tactile problems. Our smooth, comfortable full-body compression suits are like nothing else on the market. Using our exclusive stitching methods, tagging and fabric we create custom-made clothing just for your child in several different choices, styles, and colors. They'll LOVE them! Our goal is to help all people on the autism spectrum receive peace, quiet and growth by wearing our clothing. We believe our clothing helps create more productive lives for them and their families.

Clay's Law As Of Today--Now SB 43

UTAH AUTISM COALITION WITHDRAWS SUPPORT FROM RECENTLY AMENDED SENATE BILL 43

SB 43 has been stripped of its effectiveness to stop autism insurance discriminationSALT LAKE CITY (March 10, 2009) – The Utah Autism Coalition, the largest autism advocacy group in Utah, announced today they are withdrawing their support for Senate Bill 43, formerly known as Clay’s Law. Senate Bill 43 was significantly altered to become an amendment to the HIP Act (Health Insurance Pool) that creates a limited insurance policy to cover the treatment of autism spectrum disorders, when obtained prior to a child’s birth. Senate Bill 43, formerly known as Clay’s Law, originated as an autism insurance mandate to require private insurance companies to cover diagnosis and treatment of autism spectrum disorders up to age 17. SB 43 was amended before the third senate reading to a mandate option, and has now been amended even further as a HIP offering.“Clay’s Law” no longer exists in this legislative session.

Our elected officials have failed to act upon the cries for help from their constituents to provide desperately needed treatment for their children, and the pleas of taxpayers for financial relief to the state,” said Leeann Whiffen, mother of Clay Whiffen, who requested that Clay’s name be removed from the bill. “Senate Bill 43 is now a far cry from the financially and morally responsible bill we created. The window of opportunity for optimal treatment will likely close for many children who currently have autism across our state while we agonizingly wait for lawmakers to do the right thing.” The latest version of SB43 will only benefit children who have yet to be born, and only if their parents purchase a policy before 3 months of age. Autism Speaks, the largest national autism organization, joins the Utah Autism Coalition in withdrawing support for SB 43. "It's the No. 1 thing we hear from parents - what's more difficult than knowing there's an effective treatment for your children, but you can't afford to offer it to them because it's not covered by insurance?" said Elizabeth Emken, the group's vice president of government relations. “Autism Speaks and the Utah Autism Coalition call on Utah’s legislators to join the growing number of states that have ended healthcare discrimination against children with autism.” The Utah Autism Coalition will continue advocating for autism insurance coverage in Utah until it eventually becomes law.

About Autism

Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 150 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.About Utah Autism Coalition The Utah Autism Coalition, founded in 2008, is an independent group of parents and professionals dedicated to increasing autism awareness and advocating for legislation to support the autism community in Utah.

To learn more about the Utah Autism Coalition, please visit www.utautismcoalition.blogspot.com.

GFCF One Week Down!

We have been on a gluten free casein free diet for one week today. I posted some new links on the side bar for GFCF sites and blogs. One of them, called Cooking GFCF was started by my friend Darci who is also embarking on this adventure. I am hoping that removing gluten and dairy will decrease the ear infections, excema, allergies, asthma, stomach aches, constipation and behavioral issues related to ADHD and autism. We got our first GFCF cook book in the mail called "The Kid Friendly Autism and ADHD Cookbook" and so far so good on these:

Would love any success stories, recipe and product ideas! I honestly think my kids are going through withdrawal based on their behaviors. They are actually eating better now that we eat a lot of fresh fruits and veggies! How do you handle the school and friends/relatives in trying keep the "no no" stuff away from your children?  What supplements do you use?  Where do you purchase your products?

OT Today

Caleb went to his bi-monthly OT appointment today and I thought I would start documenting what we do each time. We were taught another way to do the Wilbarger protocol and got a new brush since our other one is long since hammered and lost. You can buy brushes from Integrations or Discount School Supply online. Here is the handout describing the technique to use...
We also discussed having Caleb wear a weighted backpack or weights on his shoulders. He likes tight fitting clothes and deep compression. She suggested having him wear an under armor type lycra athletic or biking shirt and shorts underneath his regular clothes. He walks on his tiptoes a lot to get the most proprioceptive input and pressure onto the balls of his feet. He also seeks heavy lifting, pushing and pulling. The OT suggested having him help move furniture or lift heavy things through out the day and in the classroom. We are also going to set up a rope tied from point A to point B that he can pull himself along on a scooter board. The pulling and work help him integrate.

We set new goals to reduce oral motor sensory seeking, useless noise making and over active motor behavior or "stim"ming. He has made a lot of improvement on fine motor skills such as cutting with scissors and writing with a tripod grip instead of a palmar grip. We are going to try to find him a gymnastics class to help with the constant desire to be upside down and crash into things. His favorite OT activities today were the trapeze swing, ball pit, sensory pool with rice/ beach toys and the popomatic dice game where he had to use deep pressure to push the plastic bubble to get the dice to turn.

Just Playing

by Anita Wadley

When I'm building in the block room,
Please don't say I'm "Just playing."
For, you see, I'm learning as I play,
About balance, I may be an architect someday.

When I'm getting all dressed up,
Setting the table, caring for the babies,
Don't get the idea I'm "Just Playing."
I may be a mother or a father someday.

When you see me up to my elbows in paint,
Or standing at an easel, or molding and shaping clay,
Please don't let me hear you say, "He is Just Playing."
For, you see, I'm learning as I play.I just might be a teacher someday.

When you see me engrossed in a puzzle
Or some "playing" at my school,
Please don't feel the time is wasted in "play."
For you see, I'm learning as I play.
I'm learning to solve problems and concentrate.
I may be in business someday.

When you see me cooking or tasting foods,
Please don't think that because I enjoy it, it is "Just Play."
I'm learning to follow directions and see the differences.
I may be a cook someday.

When you see me learning to skip, hop, run, and move my body,
Please don't say I'm "Just Playing."
For, you see, I'm learning as I play.
I'm learning how my body works.I may be a doctor, nurse, or athlete someday.

When you ask me what I've done at school today,
And I say, "I just played."
Please don't misunderstand me.
For, you see, I'm learning as I play.
I'm learning to enjoy and be successful in my work.
I'm preparing for tomorrow.
Today, I am a child and my work is play.