Wednesday, January 28, 2009

Notes from Food Aversions Webinar

I spent two hours on Tuesday, Jan 27, 2009 listening in on a Teleseminar thru Moms Fighting Autism that was moderated by Chantal Sicile-Kira. The speaker who responded to questions posed beforehand and during the Webinar was Dr. Lori Ensperger.

The topic Autism, Food Aversions, and Eating Challenges: Effective Answers that Help

I spent the time typing my notes on twitter, basically I tweeted them instead of handwriting in a notebook like I had planned to do. On twitter you use 140 characters, so these will be brief tips I typed out while listening. The following are those tweets:

At the start of the webinar Dr. Ensperger mentioned her book, Just Take A Bite.

Dr says there is no scientific evidence on gfcf diet helping kids with autism. she follows evidence based method.

statististics for typical child to acquire a new food - introduce peaches or broccoli - can take several months based on research.

can take up to ten-fifteen times for the 1-2 yr old to take to a new food - accept it, ones with dev disabilities - put food on plate.

an offer of food is not the same as forcing a child to eat, it means just putting it on the plate.

offer new gfcf food to pair it with another food they are eating, use in systematic way, small portion of item that might have gluten.

when trying new foods have foods that we are comfortable with, feel safe with the food, 3 months not long time to do diet 4 yr old.

does not want to see a 4 yr old getting hungry since not into the gfcf, do not take all foods away at one time from child, explore new food.

another question on gfcf. she is reminding about her position that relies heavily on science for the gfcf diet, mentioning the cost now.

check with Ped for an allergy, many have not mentioned age of their child in their questions, talk about food jags now, we have those.

food jag - same food, same cup, same way the food is on plate, certain brand name only, maybe even music in background all the time.

food jags are normal typical behavior - a 2 yr old might eat peanut butter every day for a month, those with ASD do food jags for yrs.

my son used to have bacon breakfast, hotdog for lunch, nuggets for dinner, now none of those,she says ASD kids do not go back to food jags.

happens to me where I stock up on item,then food jag stops, left with lots food serious issue she cautions parents dont support food jags.

keep exposing them with changes, if always chicken nuggets to turkey nuggets, change brand of nuggets, add sauce, change fork.

if we keep their food jags in tact and no changes, they will eventually stop and never go back to that food again, need to change it up.

parental responsibility, how to change mac & cheese, put food coloring in it, does not change taste, add texture, make slight gentle changes.

do not hide or sneak foods into another food doesn not work guess I will not be buying Jerry Seinfelds wife book.

she is talking about sensory issues and the temp of the foods and how they work for or against trying a new food.

just becasuse you gag does not mean you have low muscle tone. Book covers signals in low muscle tone - Just take a bite (book)

practice chewing with chewy tubes - wont work for my kids she recommends Thera Pro website, always adult supervision.

put knot in chewy tube, have kid play tug and war to practice swallowing techniques, use baby safe feeder from target.

gagging can be a learned behavior that kids use to get food away from them. If I gag mom takes food away.

kiss the food goodbye, do not over react to gagging, be calm, leave it there, maybe tomorrow we will try again.

food meal phobia - real thing - fearful of putting food in our mouth, fear of new foods, a true fear (yes I have that with seafood)

Chantal Sicile-Kira wants to know how cultural the foods of kids with autism is, doesnt think kids in France eat mac/ch,, fries & nuggets.

food jags, list of foods kids eat is prevalent in other countries too, Lorna Wing did study at her clinic, 70% of kids in UK had aversions.

question about school OTs not working on feeding since it is not educational, an issue heard often that public schools are responsible.

school OTs and SLPS are not taught on feeding aversions, need to be highly trained, can do more damage if not trained, oral motor dev

I heard that yrs ago from two diff OTs, she says put it in writing, do ltr to school by registered mail, been denied OT svcs, kid not eating

child with low weight, going all day without eating, school does need to address this as it is impacting their education/learning, advocate

listening to the teleseminar now, typically ASD kids eat mac/cheese, hot dogs, fries and chicken nuggets, that is what they stated, google?

talking about window of opportunity = question reading now

one of the myths is that children are not going to starve themselves, not true among ASD kids

Ellen Satter - she says she is a role model for mothers, a registered Dietitian, how to get your kid to eat but not too much.

How to get kid to eat, but not too much

we are responsible for where kids eat, how often they eat, the serving size, not following parent responsibiltiesi if allowing these

here are my articles for Feeding Teens, any suggestions let me know. - food pyramid for kids - says print and put on refrigerator

always a serving size of preferred food so kid can make transition to a new food

1 hr done, none of my questions yet, although she seemed to group many about trying new foods & mentioned older kids, refer to me maybe

she is talking about fight or flight over food, going over rules for parents, start a schedule for food, check for times to eat

4 yr old is too young to be picking out their own food, parents responsibility, appropriate and child friendly foods for 4 yr old New Vision - site to see Suzanne Evan morris, on oral motor stuff, OT, etc

talking about me right now, doing my links for my review of her book

talking about utensils from my question

kids only use fingers for food, goes back to sensory processing, body awareness, spatial awareness, proprioception, no body awareness

after trying several times can use fingers easier, have child eat in front of mirror, allow them to use visual system to over compensate

can see the fork in the mirror, motor planning will assist child in using the utensil. plastic ones instead of medal (yes) safe, coated one

weighted utensils, proprioceptive delay, use this instead, grasps similar to pencil grips, neat answers

lil dipper from Gerber is a good spoon with chunky grip, spoon part is small with a guard so child cannot get in too far, no gagging

Gerber LIL DIPPER spoon, baby safe feeder - recommended items for kids at any age

bowling with food, bop for kiwi or chicken legs, put music on, 5-10 mins daily, not forced and no pressure there, away from table

playing with food is separate from eating time, reason why not at table for play, use your imagination to create ways to introduce new foods

they are more willing to move along those 35 steps to tryng food, kiss it goodbye, get used to it gently

play guess the food, get shoe box, put hole in bottom, put food in there, they need to feel food in the mystery box, they might lick it too

try to stay calm and not react to their trying new food, do not need to call grandma and not over zealous, puts pressure on kid

do an obstacle course on foods,like to feel, - movement/motivating, pillows to crawl under box crawl over - our OT used to put food on swing

schools need to do ongoing assessment for preferred items, they dont like to use food as reinforcer at school

kid motivated by edibles, get sugar free gummie bears at the diabetic aisle for kids that are heavier, music is good motivator

tangible or activity based reinforcers at school, at home get kids to experience different things, like sports and music,books, etc tips for parents to introduce foods, fruit and veggie bingo game and talk tools is another company we have their stuff too

talking about kids seeing dentist, food issues can be related to issues in their mouth, yep my kid lost a tooth recently, go to CHLA

cavities affects if doing a feeding program, especially with textures, smells, she mentioned my name again about my review of her book

I think I have a review on amazon, if not willl get one there - her email with questions, can give you answers

her book is from future horizons, just take a bite that is Chantal Sicile-Kira email address, has son 20 with ASD

Webinar has finished.

Sunday, January 18, 2009

First Virtual Stop For In My Mind Tour

Welcome to the first stop of the Virtual Book Tour, 'Globe Trottin' for Autism In My Mind : The World Through the Eyes of Autism by Adonya Wong. Adonya's tour runs from January 19 to January 29.

January 6, 2009 marked the world-wide release of her children's book, In My Mind: The World Through the Eyes of Autism. This is available as an eBook and with the purchase of the book customers receive an audio version in Adonya's own voice. Check out the podcast Adonya did with Autism Hangout.

Adonya's son is named Nicholas, same as my older son. Besides both being on the autism spectrum, they share other similarities as both are not fond of dogs, schooled at home, have artistic talents in drawing, plus received their autism diagnoses from School Psychologists before their fourth birthdays.

In My Mind is how Adonya perceives Nicholas's thoughts on the world around him and based on his actions how the world views him. In My Mind is also a tool for him someday to learn more about himself and autism. I agree about utilizing books to help kids gain insights into their own diagnosis. We had numerous books to guide my son Nicholas into autism awareness. Now he is at the point where he will offer opinions on whether a child at autism daycamp is low, medium or high functioning.

I recall many years ago reading that yellow is a common favorite color of kids on the autism spectrum. I noticed on the pages of In My Mind that yellow stood out on his shirt, scarf, duck and shower curtain. The illustrator really captured the likeness of her son Nicholas within the pages of In My Mind, as noted in this Tulsa article.

In My Mind : The World Through the Eyes of Autism is a book for kids of all ages to see what makes a child happy and how those thoughts are brought to life through a Mother's vision. The dreams, fantasies and motions of one child on the autism spectrum will open the eyes and spark conversation among readers.

This is a great opportunity to start discussions on the autism spectrum within a classroom of students, at a support group with family members and parents. It is also appropriate for one on one with a therapist to initiate a dialogue on the illustrations within In My Mind where a child can share what their hopes and dreams are in the future.

My son Nicholas viewed the fifteen page ebook with me and shared his impression:

"It shows nice things that the boy is doing when really all he is doing is nothing but seemingly happy just the same." His favorite pages were nine - having fun on a roller coaster with animals and a cowboy along with page twelve inside the bathtub with the snorkel and his hand up in the air waving.

One lucky reader will win a gift basket containing an autographed copy of In My Mind, a copy of Ten Things Every Child with Autism Wish You Knew, packages of Enjoy Life™ and Namaste Foods™ goodies, and an eco-friendly cleaning starter kit (Whole Foods® 365™ brand), and (1) $50 gift card!! This prize is valued at $200. The winner will be announced 4 days after the tour ends (Adonya will revisit each blog to retrieve names).

**Simply comment about your relationship with autism, what you are doing to raise awareness, and how In My Mind has touched your life. Be sure to visit all of her stops to qualify for this amazing prize!**

In My Mind, I see many colors, bright like a rainbow, shooting about like comets in the night sky. [turn page] What you see is a child staring into nothing.

Monday, Jan 19 you are here - please comment
Tuesday, Jan 20
Wednesday, Jan 21 The Bon Bon Gazette
Thursday, Jan 22 The Queen’s Pen
Friday, Jan 23 Rawtism
Saturday, Jan 24 My Autism Insights
Sunday, Jan 25 Rainbow Project DFW
Monday, Jan 26 Tanner’s Dad’s Blog
Tuesday, Jan 27 Imperfect Clarity
Wednesday, Jan 28 Autism Learning Felt
Thursday, Jan 29 Healing Through The Eyes of Autism

To learn about her book, In My Mind, and living with autism, please visit her at Through the Eyes of Autism website and Blog!

A portion of the author’s proceeds benefit Autism Center of Tulsa (formerly Tulsa Autism Foundation).

Adonya's book is available at Amazon and a bookstore near you!

In My Mind: The World through the Eyes of Autism (Tate Publishing 2009)
Published: January 6, 2009
Genre: Children’s Fiction
ISBN 10: 1-60696-601-4
ISBN 13: 978-1-60696-601-3
28 Pages (full-color paperback)
$9.99 (includes audio book version)

I asked author, Adonya Wong, the following two questions. Her responses are in bold:

1. How would you describe your Nicholas in a few words - what sums him up?

What an excellent question. Trains are currently Nicholas's passion. He has an old timey electric train set, a train calendar (that he somehow managed to instantly locate in a store of hundreds of other themes), a train magazine... he's borderline obssessed. ;) So, summing him up is challenging, but I'll do my best. If he continues down this path, his claim to fame may be as the designer of a zero emissions locomotive.

2. His hands are always outstretched or doing something within the pages of In My Mind, except for the coloring page - is this based on your son doing the same movements?

Yes. Nicholas can often be observed flailing his arms about. It's almost as if he's conducting some music or directing a scene because the flailing is usually coordinated with a song he may be listening to or something he's watching. In my observations, I've learned that his flailing is like his own language because if you pay close attention, you can see when he's "drawing" something in the air or coordinating his hands in such a way that they form letters. It isn't ASL because we never took classes for that, but it sometimes looks like it is.

Please remember to ask your questions in the comments when sharing about your autism connection. Good luck in winning the prize. I look forward to following along the tour and seeing the comments.

Thursday, January 8, 2009

Responding to the Tough Questions

There are a few questions that no matter what will always be asked. As the parent to two kids on opposite ends of the autism spectrum they are inevitable, but still surprising.

My sons are now 12 and almost 14. When my youngest son was nine years old I attended training sessions through a clinic for Floortime. In order to get funding through the Regional Center families had to go through the training classes, which were held on a weekly basis during day and evening hours. The Regional Center is for those in the State of California.

I was able to answer all the questions that were posed to the class each week and gave examples of our experiences. Most of the other parents were there for their very young children. There were some professionals taking the class as well.

At the end of a class another Mom asked me one of these dreaded questions. She wanted to know why I was just starting Floortime for my 9 year-old-son. It really was none of her business, plus the answer is not an easy one to respond. Being in the same class for all those weeks she should have known that I am a single parent with two kids on the spectrum doing it all alone, no family in the same State.

I did not want to go into the explanation that a few years earlier we had a Floortime assessment in the home from another agency. I did not appreciate the way they portrayed me in their report or the way they handled being in my home. I am not about to have an agency bring their employees into my home who disrespect me or my children and will not be utilizing the pecs cards for my nonverbal child or appear irritated because my son needs a diaper change.

I am not about having people in and out of the house disrupting our lives and routines, no matter what the end result may be from the therapy. Pros and Cons of Assessments offers insights into our experiences. You might want to consider some House Rules for in home personnel. Here are our Rules for a Respite Worker.

A few summers ago I thought we were getting some behavior therapy, but it turned out to be parent training. The girl who came for the assessment looked like she signed on for a modeling assignment. The actual so called therapist was a singer in a punk rock band. The three months did not go fast enough. The clothes and attitude they brought into my home that summer was unreal. The supervisor girl who did the assessment wanted to do pecs with my son and DTT. She was to be supervising the punk rocker. The punk rocker's mission was to be the one to get my nonverbal son to talk. Just in case I forgot to mention - we live in Los Angeles.

Over the years I meet up with someone via email or in person that wants to be the one to turn my son into a verbal kid. They seem to forget that I am the parent here. I did not ask anyone to try to get my son to speak, especially those clearly not qualified to do whatever they think they can.

I really do not know how to respond to those who want to tell me about miracle stories of someone learning to talk through this or that therapy at the age of 9, 12, 15, whatever. I really want to say it is none of their business. If it happens, it happens, not the end of the world if my child cannot speak. Evidently it is something they cannot accept and need to get over it.

My son did turn 12 in June and is still wearing Huggies Goodnites. I do not particularly like the questions from people asking me why he is not toilet trained or when do I plan to do it. When we are both good and ready. Case closed, butt out.

So to recap the questions I find annoying and wish they would stop:

1. Why did you wait so long to try XXX therapy - or why did you not try XX therapy?
2. What have you done to get him to be verbal - have you tried XX, I know so and so tried and now talks after being nonverbal.

3. When do you plan on toilet training?

I can do without hearing these three questions. Every kid is different, nice that yours now does this and that and was trained in one hour, two days or whatever. Stop bugging me.

Thursday, January 1, 2009

My Podcast on Autism Hangout

Check out my Podcast of December 30, 2008 on Autism Hangout, where I discussed autism twitter day, autism articles at BellaOnline and a future autism twitter day in April of 2009.
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