Monday, January 12, 2009

Getting started on the GF/CF diet

I'm sure you can tell by the amount of my posts dedicated to the subject that my mind is on starting the gluten-free/casein-free diet. Talk About Curing Autism has great information about how to get started. Here's the link:

Since one of the reasons I put this blog together is to put all the information I gather into one place for myself, I decided to paste the highlighted steps of how to get started here.

Week 1-2: Remove all milk-based products. This would include milk, butter, whey, cheese, yogurt, ice cream, Pediasure, milk-based formulas, and all sub-ingredients. To replace milk, use rice, almond or potato milk.

Week 3: Find five GFCF foods that your child will eat for breakfast and serve it. Some suggestions they offer that Joey might like are frozen GFCF Waffles and real maple syrup; bacon and eggs (check for a GFCF brand of bacon) and GFCF hash browns like Cascadian Farms brand or homemade; GFCF Envirokidz cereals with rice, potato or almond milk; GFCF pancakes made from a mix, serve with real maple syrup; and GFCF French Toast made from a GFCF bread.

Week 4: Find five GFCF foods your child will eat for lunch and serve it, maintaining the choices for breakfast. GFCF Hotdog (no bun)- we use Best Kosher, Hebrew National Reduced Fat, Shelton's Chicken or Turkey Hotdogs too; Fritos (yes, they are GFCF); Lays Potato Chips; Cascadian Farms French Fries with Heinz Ketchup (I use Westbrae fruit sweetened ketchup too); Boar's Head, Applegate or Shelton's Lunch Meats; Tostitos Tortilla Chips; Fresh Fruit; and Whole Foods Market Chicken Taquitos (The 365 brand). Most juice boxes are ok too.

Week 5: Find five foods your child will eat for dinner and serve it, maintaining your choices for breakfast and lunch.

Week 6: Replace all snack items with GFCF.

Week 7: Replace all soaps, shampoos, lotions, sunscreens, toothpaste and laundry detergent and over the counter medication with GFCF.

Week 8: Replace all classroom contaminants.

Week 9: Begin making GFCF goodies from mixes.

Week 10: Now move to making a GFCF meal from scratch.

GF/CF fast food options

It's not always easy to follow a meal plan when you are always on the run. Here is some information from Talk About Curing Autism. It lists the food that is available at your local fast food joints if you are following the GF/CF diet.

Here's the link:

Arby’s plain roast beef – no sauce/no bun
Burger King
Burger patties (no bun)
French Fries (Note: each individual Burger King has their own process of deep frying. It is best to make sure a separate fryer is used for cooking french fries.)
Waffle Potato Fries (Note: Confirm Ingredients they may vary in some restaurants; also verify with restaurant manager that individual deep fryer is used.)
El Pollo Loco (good healthy choice!)
Whole Chicken on the bone
Tomato-Based Salsas
Pinto Beans
In-n-Out Burger
Protein Burger (no bun, no sauces, no cheese) just meat, tomatoe and lettuce. WATCH for cross contamination here! Buns and cheese can occupy the same space as your plain hamburger. Ask the manager for assistance.
French fries
The following information must be verified by individual McDonald's Restaurants:
Apple Juice
Peppered Bacon / Bacon Bits
Beef Patties: regular and Quarter-Pounder NO BUN NO CHEESESauces ONLY or Honey, or Hot Mustard
French Fries – as of January 2006 – ARE NO LONGER GFCF!
Hash Browns (verify separate fryers are used)
Scrambled eggs – no biscuit / no cheese
Salad no croutons
Condiments and such:
Hot Cake Syrup
Orange Juice
Picante Sauce
Tartar Sauce

AZ Restaurants that offer GF/CF options

I need to give some attention to restaurants in the area that are focusing on providing Gluten-free menu options.

Pizza Fusion ( in Mesa offers gluten-free crust so people suffering from Celiac disease or children following a gluten-free diet can enjoy a slice now and then!

PF Changs ( offers gluten-free menu items such as their famous lettuce wraps, moo goo gai pan and even a flourless chocolate dome for dessert!

Other restaurants that offer gluten-free menus:
Carrabba's (
Claim Jumper (
Outback Steakhous (
Lone Star (
Kona Grill (

Constipation - An ongoing problem for the little guy

Joey has had digestive problems since he was a baby. It started with him having to be on special formula - Enfamil Nutramigen - for his 1st year. He was also on Zantac for most of his 1st two years of life. He had to sleep on his stomach or in an upright position and always had a problem with constipation. As he started on regular food, the constipation improved because he loved fruits and vegetables and it seemed to help keep him going. Then, as he turned 3, he became very selective with what he wanted to eat and his constipation increased. Ever since then, he's been on a prescription for Miralax, taking one dosage a day. If he gets really backed up, I've had to increase it to 3 times per day until he has an explosion. This is not healthy.

I am on a message board for improving autism and a lot of the Moms on there also talk about their childrens' constipation problems and being prescribed Miralax. Some are looking for a more natural way to go. I've heard options such as FiberSure to the old standard of Prune Juice to Gripe Water that can be found at British stores (?) and Sprouts.

I hate to keep Joey on something long term so I've stopped the Miralax and am going with Apples or Apple Juice everyday. He's not going everyday but he is going every 3 days. At this point, I may need to look into a stool softener as well.

This is my poop ramblings for now. I'll keep you posted.

Tuesday, January 6, 2009

Major Event...Pee in the Potty!!

The biggest hurdle after getting your child to walk and talk is to get them to potty train. My son was on the right track, using the toilet at daycare before he turned 2. Then, his father moved out. It was also around the time that the little speech he had actually disappeared so I'm not sure if that's when the PDD-NOS starting taking over.

Well, medical professionals say that when a child is on the Autism Spectrum, it takes them longer to potty train than others. What was weird for my son is that he would go in the toilet at pre-school and daycare but never at home.

Yesterday, we were at Wal-Mart and he said the magic words, "Mommy, I have to go potty." Usually, it's "Mommy, I need a diaper." That's how I knew this time was different. I got out of that store as fast as I could and rushed home (we live around the corner). He walked into the house and straight for the bathroom. When I peeked in to ask if he needed help, he said no and closed the door on me. He did this 4 more times throughout the day, each time telling me "I have to go to the potty again."

I am so proud of him. January 5th is definitely a big milestone in his life!

Saturday, January 3, 2009

Upcoming events at SARRC

SARRC (Southwest Autism Research & Resource Center) is holding some upcoming events at their facility. I'm excited because I've been waiting for this. Just as I'm leaving my job, these have become available. They say everything happens for a reason and now I believe it.

PARENT Program
PARENT Program
(Parenting Autism with Research and Evidence-based Naturalistic Teaching)
This eight-week program provides parents/caregivers of children with autism (under age 6) a basic understanding of how their children communicate and how to facilitate language development.
Participants learn and practice strategies for increasing and improving their child’s communication and social interactions while decreasing disruptive and/or self-stimulatory behaviors. Strategies include evidence-based interventions based on the principles of Applied Behavior Analysis (ABA), including Pivotal Response Treatment (PRT) and Positive Behavior Support (PBS). Practical tools gathered throughout the PARENT Program may be applied in any situation to empower parents/caregivers to maximize their child’s ability to communicate and engage in social interactions at home, in school and throughout the community. The series consists of pre- and post-program video assessments, four 2 1/2-hour group sessions and four one-hour individual coaching sessions.
The PARENT Program is facilitated by a SARRC clinical interventionist.
When: 12:30 - 3 p.m. - Tuesday Discussions, January 6 to February 24, 2009 or 9:30 a.m. - 12:00 p.m. - Wednesday Discussions, January 7 to February 25, 2009
Where: SARRC, 300 N. 18th StreetPhoenix, AZ 85006
Instructor: Kristen Treulich, BA Clinical Interventionist
To Register: If your child is at risk or has been diagnosed with autism and is under age 6, contact SARRC at (480) 603-3283 or email
Cost: $600
Topic Schedule
WEEK 1: Discussion: Introduction to Autism, Communication and PRT
WEEK 2: Individualized Coaching Session with your Child
WEEK 3: Discussion: PRT with Toys and Activities
WEEK 4: Individualized Coaching Session with your Child
WEEK 5: Discussion: Disruptive Behaviors and Functional Behavior Assessments
WEEK 6: Individualized Coaching Session with your Child
WEEK 7: Discussion: PRT in the Community
WEEK 8: Individualized Coaching Session with your Child

FRIEND Program
This training is recommended for educators, speech therapists, and parents. School administrators and psychologists and paraprofessionals are welcome.
The FRIEND program is an inclusive social skills curriculum that provides opportunities for students on the autism spectrum to improve social communication skills in a natural setting, supported by peers, parents, educators, and therapists. Participants will develop an understanding ASD social deficits and strengths, how to create inclusive experiences throughout the school day, and implementation of the FRIEND Program. Examples of successful implementation of the FRIEND Program will be presented, as well as multimedia activities, an educator’s guide, and tips with strategies designed to support peer sensitivity training and appropriate strategies for school age students.Time: 9:00 a.m. – 3:00 p.m.

Tucson Applied Behavior Analysis (ABA) 2-day Training (Spanish and English)
The Autism Society of American-Pima County Chapter and the Southwest Autism Research & Resource Center (SARRC) are collaborating to offer a 2-day training created specifically for those living and working with individuals with autism spectrum disorders (ASD’s), including parents, educators, habilitators and professionals. Participants will learn evidence-based strategies for supporting individuals with ASDs of all ages with varying levels of ability. This training will cover the basic components of ABA, including the ABC’s of behavior, reinforcement and prompting strategies, Discrete Trial Teaching (DTT), Pivotal Response Treatment (PRT), Picture Exchange Communication System (PECS) and Positive Behavior Support (PBS). Functional Behavior Assessments (FBAs) are essential to identifying the reasons behind difficult behaviors and the development of effective behavior support plans. This presentation will detail information regarding the use of structured interviews, observation techniques, and data collection procedures necessary for effective assessments. Practice exercises will also be conducted to assist participants in the development and implementation of behavior support strategies.
On Saturday, January 17, Fernando Armendariz, Ph.D., will provide a concurrent training in Spanish for Spanish-speaking families. This training will provide parents with teaching techniques that they can implement during their child's everyday activities. The goal is to have the most relevant people in the child's life (parents and teachers) help the child develop in the most natural, positive, and stress-free environment. This training will be located at the JW Marriott Starr Pass Resort in Tucson from 8:00 a.m. to 4:30 p.m. each day. The training will be presented in English both days and in Spanish on the second day.

Joey's Journey in Silence has been "published"

I took one of my first posts, "Joey's Journey in Silence" and transformed it into an article to be posted on Here's the link:

Joey's Journey in Silence

Mom Topics - Child Behavior
Written by Michelle Downie
Tuesday, 18 November 2008
Joseph was born in October 2004. He was by all means a pleasant baby. He was sleeping through the night at 6 weeks. He reached all his physical milestones early or at the appropriate time. He even had his full set of teeth in by his 1st birthday...yet he barely said a word. At his one year check up, his pediatrician asked how many words he spoke and he barely said ten.

During his second year, Joey was noticeably quiet. As friends' children who were the same age were advancing with their speech, Joey was not. He was more advanced than other children when it came to everything else so I wasn't worried. As his second birthday approached, my Mom voiced her concern that he wasn't repeating after us. I spoke to his pediatrician who ordered a hearing test and a consultation with an ENT. The audiologists were concerned and wanted to see him back for a retest when the middle ear fluid cleared up, while the ENT thought it was too soon to put tubes in his ears. The audiologists also hooked me up with a program through the state to get Joey started with speech therapy, which I started shortly after his 2nd birthday. I had Joey's hearing retested in March '07 and again I was told to bring him back when there was no middle ear fluid. He was prone to ear infections but was not having one at the time of the test so how was I to know when the middle ear fluid was present? I brought him back to the ENT, who finally agreed to place tubes in both ears. Joey had his surgery a few weeks later and on the very same day, he started repeating after us!

I urge parents who feel that there may be trouble with their children's hearing to have it tested right away. Pay attention to signs such as your child not answering you when you call their name or sitting too close to the television when it's on. The ENT said Joey had "glue ear" because the middle ear fluid was solidifying. He heard everything as if he were underwater. I can't imagine what that was like and feel terrible for not catching it sooner. When your children don't have a voice, parents need to be their voice and I failed my son by not being his soon enough.

I'm happy to say that today, with 2 years of speech therapy behind him, my son amazes us everyday with how many new words he picks up. I'm so glad he's not living in silence anymore.

It's Been A While...

It's been a while since I've written. Life has taken over...that's for sure. The Holidays went well, mainly because there was no disruption of my son seeing his father. Even though I am all for Joey seeing his Dad; it is hard to see how sad he gets when it is time to say goodbye and it definitely puts a damper on the rest of the day. I try not to plan any events or activities after he's had time with his Dad. You never know what his emotions are going to be like and it's nice to give him time to just relax.

Joey did get to take a big trip with his Dad the day after Christmas. It was harder for me this time than it was last year when he went away. I think last year, I was looking for a break. I was still a single parent and a few days off was relaxing to me. This time around, I live with my fiance and we co-parent. I still take care of the majority of parenting but he is there to help out, which I did not have before.

The good thing about this trip is that it gave Joey and his Dad some needed one on one time and it also showed his Dad what it is like to parent Joey day-to-day. Joey also got see snow, meet his new cousin and sit in a firetruck and the cockpit of the airplane. When he came back, Joey seemed a little more mature. He has been very talkative and has been using phrases that I've never heard him say before. When he saw my fiance for the 1st time after the trip, he said "It's good to see you." I'm wondering if the time away from Mommy made him grow up a little.

Even though it was hard to see him go away, I hope he has some great memories that he will keep for a lifetime. And I hope the next time his Dad takes him away, it's not when Oregon is getting an historical amount of snow.

The New Year is upon is and I'm excited about things to come. The one thing mainly on my mind is leaving my full time job so I can spend more time at home with my son. I worked part time when he was born but returned to full time hours when he turned 2 because that's when my husband left. I've missed my time with Joey and now he definitely needs more of my time. There are things I need to do for him that I can't do while working 10 hour days. It definitely seems like a coincidence that when I decide to leave my job that all these workshops open up at SARRC (see other post) and they haven't had anything for a while. People say that everything happens for a reason. I believe now is my time to be with him. Of course, as a Mom, you always wonder if you're doing the right thing. Then, I think about how sad he looks in daycare for all those hours, 3 days a week. The kids love him but he has a tendency to isolate himself. I think between being in his regular pre-school program 4 days per week, being with me and then being involved in some different activities may be great for him right now. He seems to do the best with variety and with adult interaction.

Ok...that's my rant for now.