Parenting Partner

educational ipad and iphone apps

2011-12-11T16:45:00.000-08:00

Lately our kiddos have really latched on to the ipad and as much as they love playing Angry Birds I'd rather have them playing something that is educational and caters to their needs. We downloaded Starfall today and they are eating it up. Someone also suggested BrainPop and proloquo2go to us. Does anyone out there have any other programs they like? I'd love something that helps teach handwriting, social skills, values, or basic academics.

Helpful Items to Bring To Church for Children

2011-11-02T15:28:00.000-07:00

As a mother of four children I often have to pack a huge church bag to keep all of my kiddos occupied and in their seats for the one hour block where we take the sacrament. Listed below are some of the items we've used over the years that cater to autism and sensory processing disorder:

Scratch and sniff books

Touch and Feel books- I really like Usborne and Bright Baby board books

Crayola Color Wonder markers and soft paint sticks-mess free and magical

A weighted vest

a disk cushion to sit on

a ziploc bag with homemade goo tightly sealed with duct tape on top

finger puppets

a picture of your family small enough to take to class or a small photo laminated

theraputty with small things hidden inside

wikki sticks

lacing cards- great for fine motor skills

magnets to stick on metal folding chairs

colorforms

sticker scenes- we get ours at Oriental Trading Company

bubbles for nursery

fidgets- the dollar store or OTC is a great place to look

theraband

PVC tubing to chew on- hook to a piece of yarn

Grabber XT for oral motor stimming

Crayola Model Magic- it's not messy, this too could go in a Ziploc bag to squish

Seek and find bean bag- we made our own with poly pellets and small items

Social Stories

Gluten free diary free snacks- pretzels and gum are great for chewing input

small candies to reward quiet behavior- we use tic tacs

printed coloring sheets- free online

an oil/water or sand counter

a toothbrush

a sensory brush- we do the Wilbarger technique and joint compressions in church

seek and find books

taggy blankets and sensory baby toys

koosh or gertie balls

Check Southpaw Enterprises , Abilitations or Etsy for lots more product ideas

What do you bring? I'd love to hear your ideas!

Helping Autism at Church

2011-11-02T14:44:00.000-07:00

Author Danyelle Ferguson and I had a great time today on the set of Good Things Utah, the hosts were great! What a wonderful opportunity. Unfortunately, we only had about 7 minutes to cover a WHOLE lot of material. So she and I will be sharing what we couldn't get to today on our websites soon. For now, here is the official transcript from our appearance today with tips on helping children with autism at church. This material is taken from ABC 4 News Utah website and can be viewed in its entirety here.

"Kids with autism have a trained support system at school and in the community with organizations like "Special Olympics. But what do they have at church?Most church leaders and teachers are volunteers, who aren't trained to help children with special needs. They want to do their best but they don't know how.Author Danyelle Ferguson just wrote a book to help people.. and she came on Good Things Utah to share a few tips.

Heather Gardner is a mother to three kids with special needs, two of her children have autism. She says being prepared and careful planning can really make a difference.

Here are Ferguson's tips:
1. Start with communication- meet somewhere that's comfortable for the family.- only ask about things that are directly related to church- keep information confidential.

2. Sensory issues at church...issues such as the lights or echoes from speakers- sunglasses reduce glare from florescent lights- earmuffs help kids sensitive to noises

Calming techniques include:- sensory brush- fidgets- gum to chew- distractions- frequent breaks (walks in hall)

3. Transitions & Routines- adapt successful school techniques for church.- visual Schedule- narrative stories- "fade out" techniques as kids get older

4. Creating friendships- find out what the person's special interests are, research them, then have conversations about the special interest. - think outside of the box - incorporate special interest into lessons.- be an example of how to be a good friend to the child with special needs so his peers will feel more comfortable doing so too.

Ferguson also says a diagnosis doesn't define the person. Children with autism are very different from each other. My son has a friend in our congregation who also has autism. They are the same age. My son is rambunctious, very into sports, loves to eat, and a huggy kids. The other boy is very calm, has texture issues so is very picky about what he'll eat, and doesn't like to be touched or grabbed. Together, they make a great team. When my son is getting excited, the other boy will reach over and tap his knee and my son will calm down. On the other hand, the other boy tolerates my son giving him big hugs each time they meet up. They're two very different kids, but both have autism.

She suggests to find the strengths in each special needs child. Kids with autism, ADD or ADHD may like to be given jobs that are physically active. She says "my son set up the chairs and table in his Sunday School class each week. He loved that! Other kids may like gathering scriptures from the library, holding pictures, or choosing a class song to sing each week. Find something the child would enjoy being responsible for each week. It helps them feel important and needed at church."

She suggests activities to teach kids and youth about disabilities - but also that even though a friend has a "disability", they also have things in common with each other.
For more information, go to:http://www.danyelleferguson.com/ and: http://www.parentingpartner.blogspot.com/. "

Copyright 2011 Newport Television LLC All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

I've embedded our full video segment since many of you live out of state or were unable to get to it today. Thanks so much to those who cheered us on and dialed in to watch. I'll be sharing lots of tips we didn't have time to share on channel 4... stay tuned!

Good Things Utah Today at 10 AM

2011-11-02T05:13:00.000-07:00

This morning, co-author of (dis)Abilities and the Gospel, Danyelle Ferguson and I will be on Good Things Uta h! So, all my Utah friends, tune in today, Wednesday, November 2nd at 10 am on ABC Channel 4. Danyelle and I will be talking about how to help kids with autism and other cognitive disabilities at church.

To learn more about The Book (dis)Abilities and the Gospel and to read my review on Fire and Ice click here. Hope you can watch!

Autism Awareness Giveaway Hop Winner

2011-04-15T07:29:00.000-07:00

Congratulations to Laura La Tulipe who won our Autism Awareness Blog Hop. Please email me within 48 hours to claim your prize. And a special hello to all of our new followers!

Autism Awareness Giveaway Hop

2011-04-11T00:01:00.000-07:00

April 11th to 14th
Hosted by:
Lindsay @ Just Another Book Addict
Heather @ Fire and Ice
Pixie @ Page Turners
Kathy @ I Am A Reader, Not A Writer

April is Autism Awareness Month. To help spread the word about Autism we are hosting a giveaway hop. Each participating blog has their own giveaway so be sure to visit them all.

For More Information about Autism check these sites:
http://www.autismspeaks.org/index.php
http://www.autism-society.org/
http://autism-resources.com/

We are giving away a sensory ball as well as a copy of the book "A Child's Journey Through Autism" by Leeann Whiffen.

Leeann and her book changed our family's life and our approach to autism. She's a friend, an unfailing support and an amazing autism activist. To join her email list for the Utah Autism Coalition click here.

Summary: "Told with the intensity of a medical thriller, the extraordinary story of how Clay Whiffen and his family conquered 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
The therapy costs $30,000. We'd be mortgaging our lives and our savings on something we're not even sure could help our son. But the clock is ticking: the longer we wait, the harder it will be to pull him out of this shell. How are we going to afford it? How can we not afford it?

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. In this extraordinary story of one family's struggle with autism, Leeann Whiffen gives voice to the fear of losing a child and the fight to reclaim him, exploring what treatments eased her son Clay's symptoms, where the Whiffens found support, and how the family conquered one of the toughest challenges a child can face.

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.

To enter click and fill out this form. Giveaway is open to US residents and ends April 14, 2011. And be sure to stop by our sister site Fire and Ice as well as all the other participants below for more giveaways.

Books For Children On Grief

2011-02-27T08:03:00.000-08:00

What's Heaven by Maria Shriver

What Happens When People Die by Timothy Robinson

The Fall Of Freddie the Leaf by Leo Buscaglia

PDD

2011-02-24T09:36:00.000-08:00

PDD or Pervasive Developmental Delay. Another way of saying..."Congratulations, you have another child on the autism spectrum." There is a lot of work to be done. Work we've done before. Now we just need to step up the plate and do it again. The only way out of autism is through. And even then, it's a lifetime process of discovery and change.

My Gift

2011-01-25T07:26:00.000-08:00

by Rebecca Talley, author of The Upside of Down

You may not agree with her politics, but Sarah Palin and her son, Trig, have raised awareness about Down syndrome, the most common chromosomal abnormality named after Dr. John Langdon Down who first recognized common characteristics and termed it as a condition. Will Sarah Palin’s public life combat some of the common misconceptions about Down syndrome? Will it help people to better empathize with the 350,000 Americans diagnosed with it, and their families? Time will tell.

Each year about 5000 babies are born with an extra 21st chromosome. Shortly after fertilization, an egg begins to divide and change. Normally, each person has 23 pairs of chromosomes resulting in a total of 46. Individuals receive one chromosome per pair from the father and one from the mother. In the case of Trisomy 21, or Down syndrome, a developing egg may have divided incorrectly or something else caused it to receive extra genetic material on the 21st chromosome. The result is 47 chromosomes instead of the normal 46. This extra genetic material affects individuals in various ways and much is still unknown about which genes are actually replicated. The chance of it happening increases with maternal age. However, most births are to women under age 35.

An article, “Prenatal Test Puts Down Syndrome in Hard Focus,” by Amy Harmon in the New York Times, May 9, 2007, cites research that 90 percent of all women who receive a pre-natal diagnosis of Down syndrome choose to terminate the pregnancy. 90 percent. Why? I believe it’s because there are still so many misconceptions about Down syndrome. After the announcement of Sarah Palin’s candidacy in 2008, a commenter on a blog blamed Palin for causing her son’s Down syndrome because she didn’t receive adequate pre-natal care. DS is a genetic condition and has nothing to do with pre-natal care, yet this misconception survives.

People still erroneously believe that children with Down syndrome cannot be educated. I personally know a student with DS who was on the honor roll at our middle school. Another misconception is that people with DS all function similarly and can only do certain things. People like to place them in a “box” and only have certain expectations for them. Again, I know of a woman with DS who works on the Olympic Committee and speaks three languages and Chris Burke starred in the television series Life Goes On. People with DS play instruments, act in plays, sing, swim, and have talents like everyone else.

I’m hoping that Palin’s public life will help shed light on the truth about Down syndrome and discredit some of the long-held beliefs. I know I was completely ignorant when my son was diagnosed shortly after his birth. I expected him to be a blob. Was I ever wrong. He is most certainly not a blob. He constantly keeps me chasing after him and trying to stay a step ahead of him, though I always seem to be two steps behind him. He has his own distinct personality and has definite likes and dislikes. Though he’s generally happy, he can throw a tantrum just like any other four-year-old old when he doesn’t get his way. He’s a tease and loves to torture his older sister. He loves to “play” the piano and as soon as he hears the pianist begin at church, he raises his hand to “lead” the music. He performs for anyone who will watch. His favorite song is Head, Shoulders, Knees and Toes and he will do the actions, always making sure he has an audience. He can set the DVR to record his favorite TV shows, get on the internet and find his favorite websites, and unlock cell phones to place calls (most recently to 911).

Does he have challenges? Yes. But, in a sense, don’t we all have challenges? He may have to work harder to learn to read, but I don’t always understand, nor can I recall, what I’ve read in my scriptures and need to constantly reread and supplement my scripture study. He may have challenges expressing his feelings, but after all these years, I express my feelings far too frequently because I still haven’t learned to be patient. He doesn’t say many words, but I sure have to work hard to bridle my tongue especially when I think someone deserves a good tongue-lashing. He might not understand his own needs at times or the needs of someone else, but I rarely think about others’ feelings because I’m not very compassionate. He may never marry nor have children of his own, but I have yet to become the kind of wife and mother I should be. We all have our struggles, his are just more apparent.

I often wonder why God chose me to raise such a son. I feel so unworthy to be his mother. He inspires me to be a better person and to see beyond physical limitations. He teaches me that life is to be savored, not rushed. The little things I’ve taken for granted with my other children are now so much sweeter with him because he’s worked so hard to achieve them. I’ve learned that the journey is as important as the destination.

It’s like Christmas every day with him; he’s a gift I can enjoy repeatedly. Of course, all children are gifts, but the world seems to shun that gift when it’s wrapped a little differently.

Has Sarah Palin changed attitudes? I hope so. The world needs to realize that every life matters, every person deserves a right to live, and every child deserves respect even if he or she has an extra chromosome. After all, under the wrapping, we’re all the same to God.

To learn more about author Rebecca Talley visit her website at http://www.rebeccatalleywrites.blogspot.com/ and be sure to enter to win a copy of her book The Upside of Down at http://fireandicephoto.blogspot.com/.

Speech Therapy

2011-01-23T10:10:00.000-08:00

Our little one has been in Early Childhood Programs since August and is making great progress. Currently an early intervention worker comes to visit him twice a month. One for speech therapy and another for social intervention. He loves the visits. As well, we just started a music group last week to try to introduce him to structured settings with other children. This week the speech therapist worked on finger plays with him.We are working on his expressive language and articulation skills, as well trying to limit what is in his environment and slowing down his pace. Here's some of the songs they gave us to work with.

Recently

2010-08-16T13:59:00.000-07:00

Our seven year old daughter had some language delays as a pre-schooler and now that my son is two I decided I'd better have him screened. He had his first tubes surgery at 6 months after multiple ear infections and a failed hearing test. Just last May he had another set placed at Primary Children's Hospital since he failed both a tympanogram and hearing booth sound test. As well his adenoids were taken out. This poor little one never has time to recover from surgery before we are back in. So far he's also had two hydrocele hernia surgeries making a total of four procedures in two years. And at the end of this month we go in to get his teeth worked on. They estimate the surgery will be an hour and a half long and cost us around $4000.00 My husband is self-employed and our current health insurance has no dental coverage. So we applied for different health insurance this month and were denied.

We are currently fighting the underwriters but in the mean time, we are paying out of pocket and filling out Medicaid-D paperwork for our youngest two children. Our oldest two qualified and I pray things will fall into place.

Today I took our 27 month old to an Early Intervention screening recommended by our Pediatrician. He was put on a watch list a year ago after struggling in social/ emotional areas. This time he scored at 27 months cognitive, 24 months gross motor skills. 24 months fine motor, 28 months social emotional (yay) 21 months (slight delay) in self help, and here some the part where mom shed a couple tears. His language expressive is at 1 year 10 months a mild delay and Receptive language is a 1 year 8 months which is a moderate delay. We qualify for services. And we are offically the parents of another special needs child.

It's always a double edged word to hear that. Hooray, we are getting the help he needs, hooray, mom trusts her mom gutt and took him in again. But it is so sad to see him miss things on his tests and struggle. One thing that kid has going for him is that he is a joy in my life. He is smart and adorable and I love him with all my heart. Sometimes I wonder why these children were sent to me, because if there is one are I feel inadequate in, it is my parenting. But, hey I will try my best to make sure they make it back home the best little people they can be. I pray Their Father in Heaven will keep prompting me and gently nudging me along the way to trust my instincts and realize they need more help than most.

We will have an IFSP next week and set up services. Here are some of the resources the County screener recommended for our family since she has worked with all of my four children now doing tests:

A Mind At A Time by Mel Levine http://www.allkindsofminds.org/
Driven To Distraction book on ADHD
No Mind Left Behind on regulation
Smart But Scattered book on executive functioning and getting the frontal lobe to function
The Listening Program Does anyone here in Utah know of any providers for this? I'd like to try it with our children since they all struggle in listening comprehension.

Enduring Well

2010-07-11T18:42:00.000-07:00

My husband found this really good article today in the March 2010 Ensign magazine. It is written by the mother of an autistic son about the trials and lessons learned. LDS.org - Ensign Article - Enduring Well

Project Lifesaver

2010-05-27T11:40:00.001-07:00

Utah Autism Coalition, in coordination with the Salt Lake County Sheriff's Department, Sheriff James Winder and Captain Teri Sommers, is pleased to announce the launch of Project Lifesaver! Project Lifesaver was made possible in large part by a grant from the National Autism Association for law enforcement equipment and training.

The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children who wander due to Alzheimer's, autism, and other related conditions or disorders.

We hope this will be a great resource to our autism community. There have been so many media reports lately and over the years of individuals with autism who have wandered and become lost. Many have been found safe, but others were less fortunate. We hope Project Lifesaver can be a useful tool and bring peace of mind to many of you who worry your child may become lost.

How it works:

Citizens enrolled in Project Lifesaver wear a small LoJack SafetyNet personal transmitter around the wrist or ankle that emits an individualized tracking signal. If an enrolled client goes missing, the caregiver notifies their locally trained agency, and a trained emergency team responds to the wanderer's area. Recovery times for PLI clients average 30 minutes - 95% less time than standard operations.

The LoJack SafetyNet system also includes a database of key information about the client such as a recent photo and insight as to where the person might have wandered if he or she goes missing, and a caregiver support organization that is available by phone and e-mail 24x7 for emergencies.

How to enroll:

There is a $99 initial enrollment fee and a recurring $30 monthly service charge for clients. Families and caregivers can enroll their loved ones by calling 1-877-4-FINDTHEM (877-434-6384). For those families or caregivers who cannot afford the service, they are encouraged to check with their local agency for available options.

For more information, please contact Project Lifesaver at 1-877-580-LIFE (5433) or click here, or LoJack SafetyNet at 1-877-4-FINDTHEM (877-434-6384) or visit here.

A special thanks:
Shanda Ross, the UAC special projects chair, has done an incredible job in overseeing and organizing this project. She made us promise we wouldn't bring attention to her or recognize her in any way. (Whoops, had our fingers crossed). Shanda is an incredible autism advocate, and we appreciate her many efforts in behalf of our community

Sheriff James Winder, Leeann Whiffen, Capt Teri Sommers, Shanda Ross (running somewhere far, far away)

Sincerely,
The Utah Autism Coalition Board

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.

2010 Utah Walk Now For Autism Speaks

2010-05-01T13:13:00.001-07:00

All photos copyright Heather Gardner Photography http://heathergardnerphotography.blogspot.com/

Gluten Free Casein Free Pantry

2010-04-25T17:53:00.000-07:00

I though this might help some of you to get ideas for ready made, pantry items...

Rice Chips

Puffed Corn

Funky Monkey Freeze Dried Fruit

Puffins Cereal

Rice Cereal

Betty Crocker Gluten Free Yellow Cake Mix

Blue Chip Group Food Storage

Tings

Veggie Pirates Booty

Annie's Organics Fruit Snacks

Gluten Free Pantry Corn Bread

Rice

Veggie Straws from Whole Foods Market

Thai Kitchen bowls

Kettle Baked Potato Chips

Cherrybrook Kitchen mixes

Sunflower Seeds

Red Mill Mixes

DeBoles pasta

White Rice Flour

Rice Chex

365 by Whole Foods Gluten Free Pizza Crust Mix

Agave Nectar

Rice

Beans

Cous Cous

Gluten Free Crumbs

Plain Popcorn

Quinoa Noodles

Chile Relief SPD Book Giveaway

2010-03-08T13:21:00.001-08:00

Any of you who follow me on twitter or Facebook know that I am trying to raise money for the people in Chile who were effected by the earthquake. As a result I am posting giveaways on my blogs, with incentive for donating to Chile. 100% of the proceeds donated go directly to families I know there who are in need. This book is today's giveaway!

What would you do if your child suffered with something so severe it affected every aspect of her life?

And what if your cries for help fell on deaf ears at every turn? You'd follow your gut and fight until someone listened. And that's what Chynna Laird did. When she was just three months old, Jaimie's reactions to people and situations seemed odd. She refused any form of touch, she gagged at smells, she was clutzy and threw herself around and spent most of her day screaming with her hands over her ears and eyes.

By the time she turned two, Jaimie was so fearful of her world they spent most days inside. What was wrong with Chynna's miracle girl? Why wouldn't anyone help her figure it out? Jaimie wasn't "just spirited" as her physician suggested nor did she lack discipline at home. When Jaimie was diagnosed with Sensory Processing Disorder (SPD) at two-and-a-half, Chynna thought she had "the answer," but that was just the start of a three-year quest for the right treatments to bring the Jaimie she loved so much out for others to see. With the right diagnosis and treatment suited to Jaimie, this family finally felt hope. Not Just Spirited is one mother's journey to finding peace for her daughter, Jaimie. As Chynna says often, "Knowledge breeds understanding. And that's so powerful."

Parents and Therapists Praise Not Just Spirited

"Chynna's memoir is sure to encourage other parents to advocate with the same determination for their own sensational children."
--Carol Kranowitz, author The Out-of-Sync Child

"I only wish I had this book earlier. Even though my daughter and I live with this every day, I learned a lot from this book, and will return to my family with renewed hope and energy!"
--Nancy Pfortmiller

"Chynna's words touched my heart. Her memoir validated the overwhelming feelings I went through myself with my own daughter's struggles with her SPD. Raising and loving a child with severe SPD is draining for both your mind and your physical body. However, with a strong faith in God and the instincts only a mother can have, there is hope. Not Just Spirited will fill your soul with spirit and give you the strength needed to endure your own child's challenging behaviors, leading you on an enlightening journey of acceptance, strength, hope, and healing."
--Diane M. Renna, author Meghan's World: The Story of One Girl's Triumph over SPD

Learn more at www.LilyWolfWords.ca

Another empowering book for parents from Loving Healing Press www.LovingHealing.com
-------------------------------------------------------------------------------
Product Details
Paperback: 174 pages
Publisher: Loving Healing Press (November 1, 2009)
Language: English
ISBN-10: 1615990089
ISBN-13: 978-1615990085

To Enter To win the Book "Not Just Spirited" :

Leave your name and email address below

+3 additional entries for each dollar donated to teh Chile earthquake fund via yellow button on right sidebar

+3 for tweeting or posting this on FB, leave the link

+3 for following this blog

Add up your entires and post your total below

Contest ends March 31st and is open internationally

Check my other blog http://fireandicephoto.blogspot.com for handmade ETSY giveaways!

Yipppeee!

2010-02-25T17:58:00.000-08:00

Found this on the shelf by the regular cake mixes!!! :)

Line Em Up

2010-02-24T15:23:00.000-08:00

This is what it looks like when my son and his other kindergarten best friend get together to "play" cars.

Support HB 184!

2010-02-11T12:58:00.000-08:00

Now is the time to please call and email your state House representative in support of the Medicaid Autism Waiver bill, HB 184! If you need help finding your representative, please click here.

There are many other states that have medicaid autism waivers in place. An autism medicaid waiver bases eligibility for services on diagnosis, not income. As with other types of medicaid waivers, the federal government matches monies contributed by the state.

If passed, HB 184 would require a committee (comprised of autism professionals and parents, and medicaid professionals) to come up with how the waiver would be structured (i.e. early intense behavior therapy, respite, etc.). Their report would be submitted to Health and Human Services appropriations committee in September 2010 for approval and any further budget planning. There is NO fiscal note for HB 184.

Last year, even though Clay's Law didn't ultimately pass, our grass-roots lobbying effort caused heads to turn and a sense of urgency. Our unity and collaborative effort in the Utah autism community will cause positive change as we work together to let our voices be heard. Let's push forward and keep the momentum.

Best,
Leeann Whiffen

NEWS AND EVENTS:

*Autism Speaks Utah Walk meeting Thursday, Feb. 11 at 7 p.m. at the Sanderson Center 5709 S 1550 W in Taylorsville. Bring your friends and family - all those who would like to volunteer and show their support!

*Registration is now open for the Family Links 2010 Statewide Conference. Click here for more information.

2010 Walk Now For Autism

2010-01-19T11:26:00.000-08:00

Registration is now OPEN for the 3rd Annual Walk Now for Autism Speaks to be held on Saturday, May 1, 2010 at This Is The Place Heritage Park.

We hope you plan to participate in this year's Walk. Please visit the website at http://walknowforautism.org/utahand register your Walk team TODAY!!

Everyone who registers by January 31st will be entered into a drawing for a free dinner, just by registering your team!

Thanks again & please contact me with any questions.

Amanda Patten
Walk Co-Chair / Family Services
Utah Walk Now for Autism Speaks 5/1/2010
www.autismspeaks.org

Infant Choking CPR

2010-01-14T09:49:00.000-08:00

Allergaroo

2010-01-07T10:54:00.000-08:00

We discovered these cool little packets this week at Target! Hooray for easy microwavable GFCF meals!!! Here is the website if you are interested.. http://www.allergaroo.com/our_products.cfm

Our Favorite Christmas Present

2009-12-30T09:39:00.001-08:00

Twilight Ladybug projects a starry night sky onto bedroom ceilings and walls. Use it every night, to lessen fear of the dark and help your child sleep easier.

Twilight Ladybug offers three different colors of illumination for the stars: Sapphire Blue, Emerald Green and Ruby Red. The shell illuminates as well, for a calming nightlight effect.

The night light shuts off automatically after 45 minutes, so it's easy for you to use. Just "set it and forget it".

Our kiddos have been sleeping in their own room ever since we got this. They LOVE it!

Ultrasound and Blood Draw

2009-12-29T17:44:00.001-08:00

We just got back from Primary Children's and I felt compelled to write. I think sometimes this little white square is therapeutic for me. Last week when we went to the ER we were sent with express orders from our pediatrician to get an ultrasound right away for our 19 month old. It never happened and I left mad. When we went for our follow up appointment the next day so was our Doctor. He ordered a test right away, but it was the day before Christmas so we scheduled for today.

Little guy panicked when I sat him on the white sheeted bed. I don;t blame him. But luckily, they had a crib toy that played music and flashed lights which he loved. They took and ultrasound and when I saw on the screen the red parts my heart broke a little. She called the doctor in and he confirmed it. Lots of fluid in his other testicle. Surgery again, this time on the other side for another hydrocele. They referred us on to a radiologist and we headed to our next stop at the hospital which I had been procrastinating.

Outpatient labs for our five year old. He has been on supplements and B-12 injections for about four months so it was time for a blood draw to test for anemia and folic acid deficiency. I warned the staff that the last visit it took three of us to hold him down.

They were so good with him. They showed him the blue noodles "veins" in his arms and the tounercit. They spent a good 20 minutes explaining everything to him step by step all the while tears spilled over and his lip quivered. He knew. He stopped talking altogether. Finally we had to restrain him and they picked him up, put him in my lap straddling me. Three of us held him and some how he managed to get a hand out and slap me across the face. I realized how long it has been since I have been hit by one of my children like that.

I counted my blessings that our older two have improved so much over the years. But I will admit it hurt, just as much as it hurt to see him panic. Sometimes Autism and anxiety is hard. I knew I had to hold it together in front of my kiddos until I got home.

here i sit, this time tears streaming down my face. I am so grateful we have KLOVE Christian radio in our car, it gave me a little bit of peace on the icy ride home. Tomorrow we will call another specialist for Spencer's third surgery this year. Say a little prayer that we can all be strong and that business picks up so we can pay our medical bills.

Lessons Learned at PCMC E.R.

2009-12-22T07:46:00.000-08:00

It has been an interesting last few weeks for our family. Our children all caught some funky upper respiratory virus that causes coughing, high fevers, croup like symptoms and two of our children got open sores on their mouths. The pharmacy recommended a topical ointment for the cold sores, but then one night about two weeks ago our 6 year old started screaming. Her mouth sore had spread down both of her legs. Within 24 hours they had transformed form tiny little pink dots into open sores that were spreading fast. She was in a lot of pain and it was after hours. So we went up the ER for the first time in years. Primary Children's is right in the middle of renovating their ER waiting room so it is not kid friendly right now. She couldn't comfortably sit down at all so I was glad we got into a room with a bed quickly.

Our first obstacle was one we have learned with our other children during their same day surgeries...the child ID tag which they attach to a wrist or foot. She kept trying to rip it off. this time we found a really good solution thanks to our nurse. Tagaderm, which is a clear second skin sticker. They took off the band and attached her ID info onto her shoulder directly with the tagaderm. It really is no use making things worse than they need to be with children who have sensory issues.

Our oldest daughter has anxiety so the exam was really frightening for her and she became almost completely non-verbal. I really wish they had child life specialists and nurses to explainn things to her like they do before surgery. The nurses were concerned about what exactly the infection was , so I was glad it came back as Strep from the lab a few days later. She was prescribed keflex and another strong antibiotic to be taken every six hours.

Fast forward a week and the cough is still around. We call after hours physicians for our five year old son who can't breathe very well. The on-call doc identifies the cough as croup because it sounds more like a bark and advises us to wrap him up warmly and take him outside into the cold air every few hours.

Then Thursday of last week our 19 month old got fevers around 102 degrees. We administered alternating Tylenol and ibuprofen as well as toweled him off with a cold wash cloth. Up starts the cough. We push cold liquids through a bottle and start breathing treatments with the nebulizer on our two oldest. They improve with treatment but our baby does not. Yesterday he started alternating between lethargic and non-stop crying so we took him into the pediatrician.

By the time I got to his office our little one was flailing, throwing things and seemed disoriented. Our pediatrician found no sign of ear infection, strep throat or other obvious symptoms. At one point he pushed his chair away and based his head and closed his eyes as if seeking an answer. He excused himself for a second opinion and we were referred up to Primary Children's Emergency Room. Dr. J was concerned about Spencer's hydrocele surgery site or viral meningitis.

The hardest part of our check in was getting our little guy hooked up to an I.V. because he was pale and dehydrated from fighting the fever. He is a fighter and I felt so bad having to hold him down. He pulled off all of his leads and oxygen monitor on his toe. Todd called half of our ward/church directory and all of our family looking for someone to watch our other three children, but we couldn't find anyone home. Once again found myself wishing the ER waiting room was as cool as the other PCMC rooms with toys and distractions to keep us busy.

the good news was that the blood and urine work came back normal and they decided not to do a spinal tap after he started calming down with IV fluids. The bad news...they only treat the immediate risk symptoms at the ER. He got fevers again last night after they sent us home. We have been referred on to a urologist and radiologist. We are all hoping all of this is just an upper respiratory virus that will go away soon.

I am just happy as a mom that he is up and walking again, oriented and that he is semi-happy. I am grateful for a praying pediatrician, PCMC slushes and gatorade. Here's to a speedy recovery for our whole family and no more air warnings in our area.

Plan on at least 2-4 hours when you go to the E.R.
Bring some toys or activities for other children
Only two people are allowed back in the room at a time
An i pod or phone with a movie is a great small distraction
Plan on lots of alone waiting time in your room
Plan on making a co payment upon admission
Bring your own food or money for a vending machine

Winter Cough

2009-12-16T15:03:00.000-08:00

Every winter at least one of our children gets this horrible hacking cough that sounds like a cross between croup and asthma. This week our son was having a really hard time breathing with his cough so we got some ideas from friends, they were really good ones I though I should share...

Kat you're doing the right things. And of course plenty of rest & fluids.

Brittany If its croup, bundle them up and let the beathe the cold air outside.

Heidi Keep a close eye on how fast they breathing. If they are over 45 breaths per minute and retracting in the upper chest go to the doctor!

Alisa Last year I bought a Vicks warm steam humidifier and I use it with Vicks VapoSteam at night. I wish I had discovered this sooner! Don't use the store brand of VapoSteam--not as good. It is kind of expensive but SOOOO worth a cough-free good night's sleep!

Allie Vicks vapor rub, cold water, sit outside for a couple minutes when you're like almost dead, prop up your head as much as possible. sleep without your comforter on top of you, try to curl up a little these are just a few of the things that work. sleep on your side, with your head propped up major. i know it sounds weird to have your neck in that position

Marci Mucinex to bring up all the phlegm from his lungs!

Aprilyn Vicks makes a chest rub for kids. Do you guys have a nebulizer?

Kara Oh, I had such awful croup when I was a child -went to the hospital once or twice. Here is what my parents did: 1) put me in a steam bath; 2) if steam didn't work they would bundle me up and take me into the cold for a few minutes; 3) vicks rub and humidifiers. They would repeat this process all night long. There are heat humidifiers that have vicks drops that I may help. Good luck!

Alacia Put VICK'S on her feet and then put socks on!! It sounds weird but it totally helps them breathe better and not cough!!

Jeannie Alacia is absolutely right ... we've been using this method for years ... I know it sound weird ... but IT WORKS! :-)

Mikel I use it. It DOES work.

We took our son into the doctor after two days and were prescribed Dexamehasone and a nebulizer with pulmacort. He is breathing much better, but we have noticed the known side effect of being extra emotional and sad. Here's to breathing better! Thanks for all of the advice!

Best Toy Ever

2009-12-13T13:34:00.001-08:00

By far the best money we have ever spent on a toy. Fisher Price Rock Roll and Ride. Our little eighteen month old goes in circles inside all day lone and started a long time ago as soon as his little legs touched the floor. We don't get a lot of use out of your toys around here, but this is a keeper!

GFCF Groceries at Smith's

2009-12-12T08:31:00.001-08:00

Here are some of our groceries from Smith's Marketplace. They have a natural, gluten free section with all kinds of choices. Our favorites are hte "Tings" chips that taste just like Cheetos!

Flu Fighters

2009-11-29T09:27:00.000-08:00

Okay spectrum and other parents. We are on a probiotic and Child Essence multi-vitamins. We are on a GFCF diet. Now, how to we combat the flu and ear infections? We aren't going to do the H1N1 vaccine, and I have caught a lot of flack from family members about it. What are your thoughts?

Also, my son did not have all of his kindergarten vaccinations (by our choice) and now the school is saying we need a letter from the health department. Do we...if so, how do we go about this? Do I contact the DAN doctor?

Sibling Rivalry

2009-11-26T07:43:00.000-08:00

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!

2009-11-17T07:43:00.000-08:00

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

2009-11-04T09:00:00.000-08:00

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

2009-10-21T15:20:00.000-07:00

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

2009-10-19T09:33:00.000-07:00

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

2009-10-05T11:42:00.000-07:00

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

2009-10-04T15:30:00.000-07:00

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

2009-10-04T15:26:00.000-07:00

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

2009-09-20T09:45:00.000-07:00

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

2009-09-17T19:38:00.001-07:00

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

2009-09-03T08:03:00.000-07:00

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

2009-08-18T09:44:00.000-07:00

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 ABC's

2009-08-13T17:37:00.000-07:00

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

2009-07-05T14:24:00.001-07:00

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

2009-06-29T14:50:00.000-07:00

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

2009-06-28T09:57:00.000-07:00

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.

Autism Acceleration Act

2009-06-23T11:35:00.000-07:00

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

2009-06-19T07:14:00.000-07:00

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

2009-06-17T08:25:00.000-07:00

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

2009-06-11T11:14:00.000-07:00

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

2009-05-31T09:59:00.001-07:00

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

2009-05-22T21:20:00.000-07:00

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

2009-05-12T08:27:00.000-07:00

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

2009-05-02T12:11:00.000-07:00

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

2009-05-01T07:45:00.001-07:00

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

2009-04-28T07:59:00.000-07:00

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

2009-04-25T16:06:00.001-07:00

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

2009-04-25T14:40:00.000-07:00

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

2009-04-22T14:08:00.000-07:00

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.org www.walknowforautism.org/utah

Team Miles 4 Maia

From the Association for Behavioral Analysis International

2009-04-22T14:05:00.000-07:00

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

2009-04-18T06:13:00.000-07:00

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

2009-04-14T09:49:00.000-07:00

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!

2009-04-02T10:23:00.000-07:00

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

2009-04-01T15:34:00.001-07:00

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

2009-03-29T18:24:00.000-07:00

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

2009-03-20T08:45:00.001-07:00

GFCF (gluten free casein free) Week Two

2009-03-18T07:43:00.000-07:00

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

2009-03-13T14:12:00.000-07:00

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

2009-03-12T07:26:00.001-07:00

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

2009-03-11T08:09:00.000-07:00

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!

2009-03-10T18:07:00.000-07:00

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

2009-03-10T17:19:00.000-07:00

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

2009-03-09T12:19:00.000-07:00

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.

Caleb's Walk Now For Autism

2009-03-07T10:03:00.000-08:00

Please help us by donating to a cause near and dear to our hearts. Our son Caleb was diagnosed with an autism spectrum disorder a year ago, in March of 2008. Join our team by walking with Gardner Therapy Services or make a cash donation. Even a little bit helps. Thanks you so much! http://www.walknowforautism.org/utah/heathergardner

If you or someone you love has a child with autism join in the cause. Visit today!http://www.walknowforautism.org/

Occupational Therapy

2009-03-04T07:27:00.000-08:00

We first started occupational therapy when Meg was in early intervention. Our "OT" Joel later came into our home to work with both Meg and Caleb on sensory integration. We suspected problems after they refused to be strapped into their car seats, didn't tolerate socks or shoes, mouthed and licked everything and complained that noises were too loud. The OT and our children would bounce on thera balls, play with putty, use cause and effect noisemakers and pounding toys. He taught us about the Wilbarger technique, brushing with a medical brush as well as joint compressions. Time with these activities has always been the time when our children are the happiest.

We bought the book "the Out of Sync Child Has Fun" and began doing all sorts of messy projects like sloppy spaghetti and shaving cream raceways. Caleb and I then started attending a sensory class with early intervention. His favorite part was the drinking fountain and the toilet....the fascination with water has never gone away! Today we let our children get in the tub a couple times a day and they help me wash dishes. He couldn't tolerate the rustling of the parachute or being swung back and forth in a blanket.

Later as both Meg and Caleb moved on to pre-school and kindergarten we were referred to Primary Children's Rehab. It has been a big blessing in our lives.
This is Meghan yesterday with her therapist Julia. She worked on an obstacle course of barrels, the ball pit, crab walks and jumping into hoops. Meghan's all time favorite is the trapeze swing. She is the happiest she can be when at OT. We are hoping to earn enough money to finish our attic into a gym for all of them with therapy swings, crash mats and toys. The lighting is in! :)

Julia and I noticed yesterday that Meghan flaps her arms up and down when she gets excited and makes grunting noises to communicate what she wants. We are trying to teach her new ways to communicate what she wants rather than pointing. "Using her words" is something Meg has really improved on. Julia has also helped us to learn that Meg gets visually distracted easily. We try to keep her on task instead of moving quickly from place to place and toy to toy.

Our other goals include integrating new colors and textures into Meghan's diet. This week we are going to try dried fruits and vegetables because they are crunchy and different. We are also going to use chewies, whistles and functional things in her mouth rather than pursing, and licking her lips all the time.

Julia introduced the idea of a kitchen timer to help Meghan with transitions and basic time concepts. We will give a visual cue of the timer and a five minute warning before it's time to go places.

I am excited for Caleb's appointment next week because we haven't been for about a month. It's always interesting to get an outside perspective on things and try new concepts at home. It breaks my heart to see the constant spinning, jumping, covering ears, and turning upside down over and over. We are still looking for answers...

Parent Support Group

2009-03-04T07:16:00.000-08:00

Parent Support Group

Being the parent of a child with an autism spectrum disorder presents special challenges and unique stressors. This group brings caregivers together in order to process what it is like to parent a child with an autism spectrum disorder and provide much needed support.

Next Parent Support Group starts March 18th 2009.

Please Contact Dr. Leanne Beale at 386-8059 to register for this group.

see their website at http://autismutah.com/ for more services

SIBS Day

2009-03-04T07:13:00.000-08:00

SIBS Day

March 7th 10:00am - 2:00 pm

Primary Children's Medical Center 3rd Floor North End Salt Lake City
$5.00 per child

This workshop is for brothers and sisters 5 -18 years old who have a sibling with chronic medical conditions or disabilities.

The workshop will create opportunities, through games and activities, to interact with others in similar situations.

Lunch will be provided. Space is limited and pre-registration is required.

Family Support Services 801-662-3701

Call Your Legislator

2009-03-02T21:32:00.000-08:00

Lets Give It One Last Push!

The Legislative session ends on March 12th. That is less than two weeks away. So don't give up on us now!

Today Senate Bill 43 - Clay's Law, was read into the House of Representatives. It is our understanding that we may not have to have another committee hearing in the House because there is so little time left in the session. Our bill could go for a vote on the House floor this week. We need to make sure that we all speak to our representatives ASAP. Please call them, even if you just leave a message. Send them an email with your child's picture attached to it. We need to make sure that they are hearing our personal stories of autism before they vote on Clay's Law. Once we know the date of the vote, we will let you know as soon as possible.

If you don't know who your Representative is, you can find out by entering your address at www.votesmart.org.
Contact information for each Representative can be found here:http://www.le.state.ut.us/house/members/membertable1add.asp

Thank you for all your help and support so far. We could not do this with out each and every one of you.

Redwood Learning Center

2009-03-02T09:42:00.000-08:00

Steven Michalski, founder and the Director of Redwood Learning Center, has been working with children with ASD and their families since 1990. He received his training at the UCLA Clinic for the Behavioral Treatment of Children (renamed the Lovaas Institute for Early Intervention) and was mentored by O. Ivar Lovaas, Ph.D. and Tristram Smith, Ph.D. from May 1990 to December 1994. During Steve's 18 years in practice, he has worked with individuals with ASD (ranging from 13 months to 18 years old) at all levels of functioning. Currently, Steve is completing the coursework for an M.S. degree in Applied Behavior Analysis from St. Cloud State University in Minnesota.

Dara Michalski, the Assistant Director of Redwood, received an M.S. degree in Applied Behavior Analysis from St. Cloud State University in Minnesota. Dara began working for Redwood in May 1998 and, prior to that, was the Assistant Director of The Early Childhood Intervention Center (ECIC) from June 1995 to May 1998. Dara worked for a family, under the direction of the UCLA Clinic for the Behavioral Treatment of Children, in Vancouver, B.C., Canada from September 1994 to May 1995.

Finding Local Resources

2009-03-02T09:06:00.000-08:00

When our son was diagnosed on the Autism spectrum after ADOS testing and several different evaluations I started my ongoing search for local resources. One day after an exasperating tantrum I typed in the words "Utah " and "autism" into the search bar on Facebook. That is how I found the Utah Autism Coalition as well as many other special needs friends. These people I had never met linked us to places we never would have found on our own. Though right now we don't have the money for ABA therapists to come into our home, I am pleased to link my fellow blog readers to people we have discovered.

We pray as a family each day that our opportunities may continue to increase and that our children will get the healing they need to deal with anxiety, Asperger's, Sensory, occupational, adaptive, social and feeding issues. Here is the latest resource we've found...

Kate Dahle Andersen Autism Journeys serves individuals on the spectrum and those with related conditions. Our autism treatment center, located in Utah, offers autism therapy to children, teens, and adults, providing a foundation for the treatment of autism for a lifetime. Autism Journeys specializes in helping families maintain a comfortable and consistent family life through treatment, support, and education. We believe that empowering caregivers and individuals with autism is the most effective way to produce long-term improvements. Check out her website at http://www.autismjourneys.net/

We Have Winners

2009-03-01T18:00:00.001-08:00

Congratulations to Christie and Britt who have won a free family sitting! I am excited to meet your families and capture them on film. Let me know via e-mail what days and times will work for you.

Clay's Law Candle Light Vigil

2009-02-26T19:41:00.000-08:00

It's Crunch Time for Clay's Law

2009-02-25T11:23:00.001-08:00

Dear Autism Advocate,

Clay's Law really needs your help. This may be our last opportunity to show legislators the strength and will of the Utah Autism Coalition. We are a unified group that will not stop fighting for equal rights for individuals with autism.

1. We need phone lines to the Senators CLOGGED with calls from Autism Advocates all day Thursday and again Friday morning. Please have everyone you know calling in. It is a powerful point to be made to legislators that we can control the flood of phone calls. We need the phone calls to be ON tomorrow!

2. There will be a Candle Light Vigil on the Capitol steps tomorrow evening from 5pm-7pm. Please bring your whole family, friends and neighbors to the Capitol Rotunda and bring candles. We will walk outside and light our candles together at 6pm. Bring any signs that you have made in support of Clay's Law. We will be able to hold them high during our vigil. Let us be clear... We need a HUGE showing for this vigil. It needs to be the most powerful statement thus far. Our goal is to have 1000 people attend, so please gather your friends and family and let's make it happen. A large attendance will draw media coverage and help carry the momentum into Friday's vote.

When: Thursday, February 26th, 2009
5 p.m. - 7 p.m.

Where: Utah State Capitol (rotunda and south steps)

3. Clay's Law will have it's final Senate vote (3rd reading) on Friday morning between 9am-noon. Please plan to attend and wear red. Please watch the blog for any updated information. WWW.UTautismcoalition.blogspot.com

We have received many emails inquiring about Monday night's meeting. While we would love to answer all of these emails immediately, we simply don’t have time to respond to each one at this time. We want you to know that we are pressing forward with Clay's Law to require health insurance providers to stop discriminating against those with autism. We have decided to not pursue other funding sources that have been offered to us. However, there will be a few amendments to the bill in an effort to address the concerns raised by Senators who voted yes on the last vote. We are still working on those amendments.

Toys That Teach

2009-02-24T16:39:00.000-08:00

My daughter and I went to one of our very favorite stores today. Lakeshore Learning. They carry a lot of the supplies you could order online as fidgets in the small bins by the cash register. Here are our kid tested hits:

The Tangle

The Koosh

Bumpy Balls

For Fine Motor Skills development we like these:

Feed the Animals Game

Tri Write Crayons (are on clearance this week)

If nothing else order a free catalog for fun ideas. They have fun crafts and parties on location and they give discounts to educators. We really love their play dough because it is soft and smells yummy and there is a gluten free variety. We use the pencil grips as chewies and the wicky sticks, craft supplies and science experiments keep our kiddos busy for hours! The only set back is that they can be rather expensive. If you have your heart set on something there, shop around for a web coupon or watch for it to go on sale. Prepare to have fun at their store...

Bus Social Stories

2009-02-24T02:48:00.000-08:00

Many of our blog readers come here looking for social story about riding the bus. My oldest child has always had anxiety about getting onto her school bus. It was so hard for me as a mom to put her on the bus each day crying and clinging. She loved school and was always fine once she got there , but actually putting her on the bus was extremely difficult. Her anxiety has improved over the years thanks to the use of social stories. She does much better today than she did when she first started taking a bus to the therapeutic Pre-school three years ago.

I found this website which is amazing and the following post with a bus social story:

Taken from Child-Autism-Parent-Cafe

This social story to school and to home was written for our young loved one with autism to help teach him bus safety rules and what to expect before, during and after his ride to school.

MJ Rides the Bus Safely

Text: "I take the bus to school every day."
Photo: Bus

Text: " My daddy brings me to the bus and says “Have a good day in school.”
Photo: Daddy waving goodbye

Text : "I say “hi” to Anne and get on the bus."
Photo: Driver at wheel

Text : "Daddy helps me put on my seat belt."
Photo:: Daddy fastening seat belt

Text : "My seat belt helps me stay safe on the bus."
Photo:: MJ in harness

Text : "When my seat belt is on, Barbara gives me my special bus toy."
Photo:: MJ with special toy

Text : "I can also listen to music on the bus."
Photo: Picture of CD player

Text : "I can ride the bus to school safely, keeping my hands and voice quiet."
Photo: MJ riding bus safely

Text : "When I get to school, I get a star for riding the bus safely."
Photo: Star on card

Text : "An aide helps me get on and off the bus."
Photo: Aide at the bus

Text : "I show my teacher my star for being safe on the bus."
Photo: Teacher seeing card

Text : "My teachers are very proud of me."
Photo: Teacher giving MJ high five

Text : "I can play a special game or sing because I have earned a star for good bus behavior."
Photo: I am happy that I had a safe bus ride.

Here are some other bus social stories we found available online:

Autism PDD Message Board Compilation

Inclusive Learning Technologies

Columbia Public Schools

James is a Good Bus Rider

PECS Daily Chore Chart

2009-02-23T21:14:00.000-08:00

We are trying a new schedule chart. It's great for visual learners and fun to check things off in a way little children can actively do and understand.

We got the idea from the PECS system for autism. They use similar charts at the Children's Center and at sensory classes we took to transition from one activity to another. All of the kids had fun taking pictures of the things we need to accomplish every day. After printing and laminating the pictures I attached them to a giant poster board using sticky velcro strips. The idea is to remove the pictures from the velcro strip as you finish each task.

Later we re-sorted all the kids' toys into clear plastic bins. This time we labeled the bins with Velcro tabs so the kids can always remember where things go. I'm hoping the labels will make clean up a little easier.

I've found we just don't play with a variety of toys so I thought we'd pick a new picture each day and rotate. I was amazed after we laid everything out on the floor at how excited the three of them were to put things away. Sorting became a game.

Quality Of Life Autism Center

2009-02-23T20:54:00.000-08:00

We have been exploring options for treatment in Davis County, Utah and were referred by our friend Calleen of "Walk Now For Autism" to the

Quality Of Life Autism Center

Affordable, Exceptional Service...

The Quality of Life Autism Center, LLC offers a wide variety of services to help out families with children affected by Autism Spectrum Disorder.

We offer...* Autism Evaluations* The Listening Program / Sensory Integration * Floortime Therapy* RDI Strategies* Baby Sign Language* Educational Consulting* ADHD Assesment* Social Skills Consulting* Behavior Management* Anger Management* Reflexology / Foot Zoning

Although this is an Autism Center, I have worked in education for many years and have worked with children in every area from severely handicapped to highly gifted if you have an educational need that does not involve Autism, feel free to give us a call to see if we can help you out.

Karen Halterman
Psychologist & Autism Specialist

801-771-0848

karenhalterman@msn.com

Bouncin Off The Walls

2009-02-23T20:26:00.000-08:00

Big MAKs (Mothers of Autistic Kids) and their children go to Bouncin' Off the Walls to network and allow the kids to have some fun! (There is only one door out & we all sit right there and gaurd it!)

Bouncin' Off the Walls;

398 West 9400 South;

Sandy, Utah

$5 per kid

Make sure they wear socks! Questions? smithfam29@msn.com

Thanks Calleen for the info!

Clay's Law Meeting Tonight!

2009-02-23T11:14:00.001-08:00

Important Meeting Tonight! The bill is at a crossroads. Your input is essential to the direction in which it goes. The bill will need some necessary amendments. These decisions have to be made immediately. This is only opportunity to be able to discuss it with the whole body of parents that are supporting this bill. We apologize that this is coming with so little notice. Things have been changing hour by hour, but we don't want to make these decisions without your input. Please pass this on to anyone else that would be interested. We want to make sure that everyone knows about it.

Where: Draper City Library. 12400 S. 1136 E. (Pioneer Road)
When: Tonight at 7:00pm (STRICT rule: We have to be out of the building by 8:45pm so the meeting has to end at 8:30)

Thanks!
Brittany Recalde
Leeann Whiffen
Steve Michalski

LDS Church Disability Resource Page

2009-02-22T04:20:00.000-08:00

Welcome to Disability Resources
This Web section on disabilities has been created to offer support, comfort, and an increased level of acceptance toward those with disabilities.
Those individuals who live with a disability, their caregivers, as well as leaders, teachers, and members may find within this site additional understanding of specific disabilities and some of the difficulties faced by those involved.
General Info
Leaders and Teachers
Family Resources
FAQ
Helps, Resources, and Disability List

Each of the categories below includes helps, resources and additional information about various disabilities.
Autism
Chronic Illness
Hearing Loss & Deafness
Intellectual Disability
Learning Disability
Memory Loss
Mental Illness
Physical Disability
Speech & Language Disorders
Vision Loss & Blindness

First Presidency Statement
"The Church of Jesus Christ of Latter-day Saints is working to provide easier access to its buildings and facilities for people with disabilities. We also are seeking more creative ways of providing religious training for those with physical, mental and emotional impairments. But there is an even greater need to reduce the barriers imposed by a lack of understanding and acceptance of those who have disabilities.

"We urge leaders, teachers, neighbors, friends and families to:

Help increase awareness and understanding of disabilities.
Accept those with disabilities as children of God and help them to feel respected, loved and understood.
Provide opportunities for members with disabilities to learn about the Savior and pattern their lives after Him.
Assist in the successful Church participation of people with disabilities and the appreciation of their unique gifts.
Provide meaningful opportunities for members with disabilities to serve, teach and lead others.

"It is our opportunity and our responsibility to follow the example of Jesus in loving our neighbors, and that includes those with disabilities" (Church News, Apr. 29, 1989, 7).

Utah Family Links Conference

2009-02-20T04:01:00.000-08:00

Utah's Family Links 2009 Conference
A statewide conference for parents of
individuals with disabilities and special needs

Registration is now available online for Utah’s Family Links 2009 Conference! This conference will also feature: an exhibitor fair, networking opportunities, and local professionals and specialists to help you get information and services to help your family member with a disability or special needs. Visit www.utahparentcenter.org today to get more information and to register!!!

March 13 – 14
Murray High School; 5440 South State Street
Parents can attend for as little as $20!
Certificates of attendance will be available and can be used for re-licensure points.
Early registration deadline: Friday, February 27

Featured Speakers

Robert Brooks, Ph.D., Faculty, Harvard Medical School
Dr. Brooks is one of today’s leading speakers on the themes of resilience, self-esteem, motivation, and family relationships. During the past 30 years, Dr. Brooks has presented nationally and internationally to thousands of parents, professionals, and business people with a message based on encouragement, hope, and resilience. He is renowned for the warmth and humor he uses to bring his insights and anecdotes to life.
Michael McLean
For 25 years Michael McLean has been changing lives with his tender songs and candid messages. He has shared the "hard stories" – those from his own life and those of others – and has sung us all the way to the light at the end of the tunnel. It wouldn’t be a stretch to say that for every person, twist, or turn along life’s path, Michael McLean has the perfect song. Join us as we enjoy a performance by this talented artist.
Allie Schneider
Allie was born and raised in Salt Lake City and is now twenty-two years old. She has been with the National Ability Center in Park City, Utah as a participant for eighteen years in programs such as snow skiing, horseback riding, water skiing, cycling, and bobsledding. As the Communications and Events Assistant, Allie has worked with national and local news organizations which have visited the National Ability Center, and she helps coordinate all major events at the Center. She also serves on the Utah Developmental Disabilities Council. Allie is an Ambassador for the “Power in You” program representing disabilities. Her favorite quote is "Don’t let what you cannot do interfere with what you can do."

Awards
Each year members of the community are invited to nominate an outstanding individual in their community for one of our annual awards. These individuals may have overcome challenges themselves, made excellent contributions toward the improvement of the lives of families of children and youth with disabilities, or made a difference in your life or the lives of others. Categories include: individual with special needs, parent, grandparent, friend, teacher, sibling, professional, volunteer, and advocate. Individuals that are chosen will be recognized during the opening session of the conference. Nominations are due on Friday, February 27 so turn yours in today!

Slide Show
Send us photographs that showcase individuals with disabilities – at work, at school, at play! All photographs will be featured in a slide show that will be shown during the conference. All photographs become property of Family Links and the Utah Parent Center. If you are sending a picture, please check the “slide show” box on your registration form. Please email all photos to: familylinks@utahparentcenter.org. All photos are due by Friday, February 27.

Hotels
A limited number of rooms have been reserved at the Sandy Hampton Inn located on 10690 South Holiday Park Drive in Sandy, Utah. Rooms are $90 per night. The hotel is right off of I-15 so you will have easy access to the freeway to get to the conference. Make sure to mention “Family Links” when you call for your reservation to get this great rate! Call (801) 571-0800 today!

Questions?
Please contact the Utah Parent Center
Call: (801) 272-1051 or (800) 468-1160; Email: familylinks@utahparentcenter.org; Online: www.utahparentcenter.org

Clay's Law Senate Vote - Wednesday at 2:00pm

2009-02-14T15:25:00.000-08:00

Clay's Law is on a roll! The supporters who turned out in droves Thursday to fight the good fight thrilled us and Senator Stephenson. As a result, Clay's Law passed out of the Senate Health and Human Services Committee! Congratulations Utah! We have to keep the momentum going!!!!

The next stop for Clay's Law is the Senate Floor and 2 more votes! The first critical vote will be this Wednesday, February 18 at 2:00pm. We need your help to ensure that every state senator votes YES on Clay's Law! Please continue to contact your Senators so they don't stop hearing about the importance of passing this bill. You can also help pass Clay's Law by participating in getting petitions signed in one of the districts where we are gaining signatures. The Senate districts that we currently gaining signatures in are: Liljenquist, Christensen, Jenkins, Dayton, Valentine, Killpack, Madsen, and Urquhart.

PLEASE SHOW UP FOR THE VOTE! We need to continue demonstrating how much the citizens of Utah want this bill to pass the Utah Senate by showing up en masse for the vote on Wednesday at 2:00 pm. We need at least 300 people gathered in support at the Capital Rotunda and Senate chambers. Please wear something red and come to the Capitol Rotunda starting at 10:00am. We will have special note cards for everyone to sign that we will then deliver to each Senator prior to the vote. There also may be opportunities to speak to your Senator in person about supporting Clay's Law. The Senators will also know their constituents are there watching them vote! You can write a short note on a half sheet of paper or 3x5 card that says that you are here in support of Clay's Law. Tell them that you will be watching their vote today. Sign it with your name and city. Have your friends and neighbors make these basic cards too. If they can't come, ask them write a note too, and send it with you. All notes must be collected by 1:00pm so we can hand deliver them to each Senator just before the vote. The more notes they get, the more pressure they will feel from their constituents to vote in favor of Clay's Law.

The Senate Gallery only seats about 100 people. They do not allow anyone to stand so Senator Stephenson is working hard to have video and audio pumped into the Capitol Rotunda. We want to make sure that everyone is involved.

In order to continue showing courtesy and respect for the legislative process, we ask that parents with energetic children please stay in the Rotunda area for the vote.

Senator Stephenson was extremely impressed with the conduct of our grassroots supporters at the committee hearing. Please continue to always be polite and respectful to the legislators, even if they do not agree with you. Clay's Law is a very emotional issue and it is very easy to get frustrated with a legislator when they do not share our views. However, we need respect their right to see this issue differently. If you start to feel upset or angry, please end the conversation.

Lastly, we are struggling to get strong support in the districts for Senator Urquhart and Senator Stowell. If you have family or friends that live in these counties: Beaver, Garfield, Iron, Kane, Millard or Washington, Please ask them to contact their Senator and encourage them to support Clay's Law. We need to get more letters and phone calls to those two legislators ASAP.

Thank you for your ongoing support!

Special Needs Photography Give Away

2009-02-13T14:07:00.000-08:00

Leave a comment on one of Parenting Partner's posts and you are automatically entered to win your choice of an 8x10 custom art print. Utah residents may also choose a free one hour sitting and photo CD of your special needs child from Heather Gardner Photography. Happy Valentine's Day! Contest ends March 1, 2009 and the winner will be notified via e-mail.

It's A YES!!!! At Clay's Law Committee Hearing

2009-02-12T10:00:00.001-08:00

Today was a huge step forward on the path to making Clay's Law legislation. We attended the Senate Sub Committee Hearing and it PASSED!!!!

It was emotional to see all of us parents of autistic spectrum children crammed in the small room. We were sitting next to a set of twins who were autistic and their parents gave up their seats for me with my four children. I watched as children all around me had fidget toys, chewies and tantrums. For once I didn't feel embarrassed when my son and daughter started kicking each other and hitting. The mother leaned over to me and whispered "you are the bravest woman in the whole United States." I was going to say the same about her. She offered Meghan her bracelet to play with and they signed the word "color" with me as we shared our paper and pen with the boy next to us.

We finally made it out to the hall after sitting in the committee room for an hour. Caleb wanted to be upside down as did Emmalee. Both of them took to hanging on the stair banisters and chasing a laser beam light. We were not the only parents in the hall, stalling to find out the results. I saw the familiar exhausted faces and mother's trying to help calm their children. I felt at home and tears welled up for the first time in a long time. I don't need to feel guilty or ashamed of who I am as a mother. I try my best but it is still a battle. Every day is still hard.

I am, like all the other around me, hoping this legislation will open doors to get the help we need.

On the way out our children hit their usual spots, the drinking fountains, the handicapped buttons and the revolving doors...over and over again around and around. The giant fountain outside was hard to leave. When I saw Caleb covering his ears, flapping his hands and screaming, I knew it was okay. Understanding eyes instead of judgements or scrutinizing comparisons. I felt incredibly blessed with the challenges we have when I saw today what others face. They are truly everyday warriors and hero mothers and fathers.

Caleb and a new friend playing on the House building stairs

We all cried when the vote came in yes after hearing testimony from both sides.

Here's where it goes next:

2. Senate Vote - The whole Senate will be able to vote on Clay's Law.
3. House Sub Committee Hearing - Just like the Senate, it has to go through the sub committee first.
4. House Vote - The whole House of Representatives will be able to vote on Clay's Law
5. Appropriations Sub Committee - This sub committee decides if it's worth the money to pass
6. Governor - After passing all of that, Gov. Huntsman can still Veto the Law.

They will need as many people as possible to show up to all of the hearings and votes. Please continue to contact your legislators and ask them to support Clay's Law!!!

Clay's Mom, Leeann Whiffen and Brittany Recalde.... The Utah Autism Coalition Founders leaving the hearing victorious

News Media at the Hearing

Here is a link to the Law Itself http://le.utah.gov/~2009/bills/sbillint/sb0043.pdf

Bill Highlights:- Requires private health insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder- Coverage will be provided to individuals under the age of 17- Coverage under this bill is subject to an maximum benefit of $50,000 annually for a child who is less than 9 years old and a maximum benefit of $25,000 annually for a child who is between 9 and 17 years old- Coverage provided for treatment of autism spectrum disorders, defined as any treatment generally accepted by the medical community or the American Academy of Pediatrics as an effective treatment for children with autism- The bill includes coverage of the following treatments: Habilitative or rehabilitative care, Early intensive behavior therapy, Pharmacy care, Psychiatric care, Psychological care, Therapeutic care, Occupational therapy, and Speech therapy- The bill applies only to fully-funded health plans governed by state- If passed the bill will go into effect on July 1, 2010

Thanks to all of the amazing parents we met, Dr. Jolma from the Health Department, Leann and Brittany. It was nice to finally see you in person! See you at the next vote!

Related links:

Utah Autism Coalition

Support Autism Treatment

2009-02-11T16:26:00.001-08:00

101 Ways to Praise Your Child

2009-02-09T13:09:00.000-08:00

Clay's Law Hearing...Please Come!!!

2009-02-06T07:10:00.001-08:00

It's really happening this time!! Clear your schedule right now!

Who: Clay's Law hearing in front of the Health and Human Services Senate Sub Committee
When: Thursday, February 12th, 8am
Where: Utah State Capitol, Room 250
How Can You Help: BE THERE!! Bring your family, friends, neighbors, church friends, playgroup moms & kids, bring EVERYONE! We need to fill that room so that it's standing room only, and there are people spilling out into the hall. Bring signs that say "Vote Yes for Clay's Law" or "We support Clay's Law." If you are in Senator Bell or Senator Stephenson's districts, bring signs that say "Sen. (Bell's/Christensen's) district is for Clay's Law." We are having buttons made that say "Vote Yes!!! Clay's Law" we will only have a few hundred made, so if you take one, make sure you hold onto it and wear it again to other hearings in the future.

Please forward this on to everyone you know in Utah. Ask them to be there to support Clay's Law!

Just so you know where we are at in the legislative process... here is the breakdown. Clay's Law has to pass each step. If it fails in any one of these spots, it's dead. Then we will have to work even harder next year to get it passed. Let's just knock it out of the park NOW!!

1. Senate Sub Committee Hearing - this is the meeting that is on Thursday.
2. Senate Vote - The whole Senate will be able to vote on Clay's Law.
3. House Sub Committee Hearing - Just like the Senate, it has to go through the sub committee first.
4. House Vote - The whole House of Representatives will be able to vote on Clay's Law
5. Appropriations Sub Committee - This sub committee decides if it's worth the money to pass.
6. Governor - After passing all of that, Gov. Huntsman can still Veto the Law. So, we'll need to start writing him letters too.

There are only five weeks left in the legislative session. So this will all fly by really fast. We will need as many people as possible to show up to all of the hearings at votes. Please continue to contact your legislators and ask them to support Clay's Law!!!

Thank you for all of your hard work and support. We honestly can't get this bill passed without help from all of you. It's you guys that is making this all happen.

Brittany Recalde
Leeann Whiffen
Steve Michalski

Cookie Cutters

2009-01-31T13:16:00.000-08:00

I wanted to start posting about some of our life saver businesses that we could not do without. My two oldest children were both deathly afraid of getting haircuts. They would scream and cry every time. Just imagine it from a sensory stand point...the spray bottle of cold water, the scissors, the feel of the cut hair itching on your back and the sound of the blow dryer. None of my children like or tolerate getting their hair brushed or styled. Enter Cookie Cutters.

What a miracle!!!! They sit still in their own little car while watching a movie to distract them. There is a little slide and video games in the waiting area. And at the end they even get a sucker and balloon. To me it is worth a couple extra dollars and they love it!

The Bilibo

2009-01-29T08:08:00.000-08:00

I took these pictures yesterday at the Orthopedics office in Primary Children's Medical Center. Our children with sensory issues and autism spectrum children love these toys. They are called "Bilibo's". I included their awesome website link for you to browse. Children can sit and spin in the Bilibo or use it for imaginative play.

2009-01-27T17:29:00.000-08:00

Free Autism Speaks Lecture February 4th:

Researching the Basic Biology of AutismSophia A. Colamarino, Ph.D., Vice President of Research, Autism Speaks
And…
Learn about “Clay’s Law” and other legislation here in UtahHoward Stephenson, Utah State Senator, District 11

February 4, 2009 Utah Valley University, OremSorenson Student Center – Centre Stage6:30pm to 8:00pm

Sophia Colamarino, Ph.D., Vice President of Research, Autism SpeaksSophia graduated with dual degrees in Biological Sciences and Psychology from Stanford University. She received her Ph.D. in Neurosciences from University of California, San Francisco (UCSF), where she studied brain development with distinguished neuroscientist Marc Tessier-Lavigne, Ph.D. After receiving her Ph.D., Sophia conducted research on the genetic disorder Kallmann Syndrome at the Telethon Institute for Genetics and Medicine in Milan, Italy, led by human geneticist Andrea Ballabio, M.D. She then returned to the US to work at the Salk Institute in La Jolla, CA, studying adult neural stem cells and brain regeneration in the laboratory of well-known stem cell pioneer Fred H. Gage, Ph.D. Sophia's extensive research career has included publications in such prestigious journals as Cell, Nature and Nature Medicine.

Senator Stephenson is a Republican serving in the Utah State Senate (District 11) since 1992. He received his Bachelor's Degree in Psychology and Aerospace Studies, and a Master's Degree in Public Administration - both from Brigham Young University. He currently serves as President of the Utah Taxpayers Association, Chair of the National Taxpayers Conference, and is a Member of the United States Chamber of Commerce and the Legislative Coalition for People with Disabilities. In 2008, the Utah Association of Public Charter Schools gave him a grade of A+. He's been voted "Hero on the Hill" 4 times by the Coalition for People with Disabilities, was awarded Legislator of the Year by the Utah Health Insurance Association, Lawmaker of the year by the Restaurant Association, and Outstanding Legislator by the Food Industry Association. He and his wife, Julie, reside in Draper, Utah. They are the parents of 5 children.

Please RSVP: Utah@AutismSpeaks.org or 1888-8Autism, ext 17

CLAY'S LAW, Senate Bill 43

2009-01-25T13:47:00.001-08:00

Clay's Law has finished being written. It has now been filed and numbered and available for everyone to read. Check it out here: http://le.utah.gov/~2009/bills/sbillint/sb0043.pdf

We also have this very compelling video about Clay's Law. Please tell your legislators to watch it.

For more information check out UTautismcoalition.blogspot.com