Wednesday, April 6, 2011

Picky is an Understatement

We are going to try the "short" thing again and see if it works this time.  I just have a REALLY hard time telling a story without every detail.  (Left Brain)

Wyatt will be 6 in one week.  It is freaking me out.  I can't believe he is so old.  I can't believe we have been on this journey for 4 years now.  It seems like way longer because it is really the only way of life I know anymore.  I hope (know)  that it is all changing and soon.   That was totally off topic.  (Right Brain)

One Rule on this post.  You CANNOT watch the video until you read the post.  Okay - I will not really enforce that but I really want you to get the full picture of why this video is so amazing.  Otherwise I would not have spent 2 hours (with interruptions) writing it. 

In the beginning Wyatt was a good eater.  He drank his bottles, he ate his fruits and veggies (baby food) and even loved the Gerber meals with chicken, peas, carrots the works!  I was so excited because my Brody was a TERRIBLY picky eater.  Then, after environmental triggers mixed with a bad vaccine reaction (we will save that story for another time...)  It all stopped.  He started slowly but surely refusing the foods he usually loved.  He started throwing his mac and cheese on the floor, refusing his chicken dinners, etc. etc.  As a mom you get so worried when your child won't eat so you give them whatever you know they will eat.  We all do it.  He got to where he would only eat chicken nuggets and fries, drinkable yogurts were his obsession and he could down juice like nobody’s business.  Oh ya - and how could I forget Cheetos?  Great diet huh?  I tried everything under the sun but he refused or threw it so I just gave in and gave him what he would eat.  

It continued that way for a long time - from about age 18 months- 2 1/2 years until we decided to try going GFCF (Gluten free Casein free).  I had read that it was helping improve bowel problems and other symptoms for kids on the autism spectrum.  At first I wondered how in the world food could affect their brains but then I did my research and got the answers.  We can go into bowel disease, food and the autism connection another time - I am really trying to stay on task here.  When my husband and I found out that the foods Wyatt (and Brody) were eating could literally be toxic to their bodies, we decided we had no choice but to take them out of their diets.  I was scared to death.  Wyatt’s diet was entirely Gluten and Casein - so I knew he was going to starve.  At the time, he had become so picky that he would not only just eat chicken nuggets, but they had to be Dinosaur shaped chicken nuggets.  If you tried a different shape or size, it was a no go.  I went to a little natural food store near my town and found some gluten free chicken nuggets, some gluten free cookies and a few other foods for a mere $80.00 and headed home.  I thought for sure I could get him to eat some of this stuff.  Boy was I wrong. 

Six days went by and he ate almost nothing.  He lived on only juice and marshmallows - for real.  But I was not giving in.  I had read about the withdrawal symptoms he would have since those foods actually "drug" them (which is why they become obsessed and only want those foods. -Again - we can go into all that another time)  I watched him run to the fridge for one of his drinkable yogurts and  search everywhere.  It was so heartbreaking to see my little 2 year old frantically looking through drawers and on shelves and then falling on the floor crying and screaming.  This was so strange because Wyatt was always such a mellow kid and didn't act like that so I knew it was the food (lack thereof) that was causing it.

I searched everywhere online for ideas or things that I could get him to eat and one night I found it!  Gluten Free Chicken nuggets shaped like DINOSAURS!  They were an hour away from me, but I was going to get them the next day so my little boy could eat.  Wrong again.  I put them on his plate, he looked at them and even picked one up  and inspected it but then....... he put it down and wouldn't eat it.  :(  I was SO devastated.  I thought for sure he would finally eat.  Nope.  The next day I gave them to him again and they sat on the plate for an hour.  Finally he wandered over to them and grabbed one and ate it.  I was so happy my little boy was finally eating!  He still only ate gluten free nuggets (which we found out a year later and thousands of dollars later that they actually had trace amounts of gluten in them!!!), french fries and gluten free Oreos, etc.  Still not a great diet but we saw a lot of improvements in his behavior, eye contact,  and it especially helped with his terrible constipation problem.... 

Wow - I am NOT good at short stories.  I am going to try to cut a lot out here or you might all be here until the weekend reading this one post.

Over the past 4 years it has rotated slightly but essentially Wyatt has eaten only the following items:

From age 2-4 (Gluten Free Casein Free Diet)
    • Gluten free Dinosaur Nuggets
    • Gluten free cookies
    • Gluten free french fries
    • Fritos
    • Lays potato chips
    • Gluten free Waffles (but ONLY if they were the mini round ones - no other shape or size would do)
    • Juice, Juice and more Juice
    • That is really it I think.  Wouldn't touch gluten free cupcakes, Popsicles or any other item typical kids would like.  
    • He would not even look at, touch or get near anything else.  He would not eat anything off of a fork or spoon. 
After that we switched to the Specific Carbohydrate diet which is VERY limited.  He cannot have any carbohydrates.  No gluten/wheat, no corn, no rice, no potato or starches,  no sugar, etc.  He essentially can only have meats, fruits and vegetables and nuts.  He cannot have any pre-packaged foods at all - everything has to be made from scratch.   So we switched to Almond flour for baking and for 2 years we have baked and cooked all day long (totally not something I ever enjoyed or would have ever thought I would be doing)  We make pancakes, waffles, muffins, breads, crackers, etc.   The boys are both on this diet even though I have been talking mostly about Wyatt.   We saw HUGE improvements with this diet - especially when we took out all the juice and switched him to water and only water.  That was REALLY hard.  Anyways, this is when we FINALLY saw bowel improvements and a lot more language coming out of him.  This diet has been said to be the BEST diet for kids on the spectrum.  I truly wish I would have just started on this diet right away instead of going GFCF.  That diet costs SO much more money and even though they are eating gluten free, they are still just eating cookies, nuggets and unhealthy items.  That being said - I don't think I could have pulled off home-made dinosaur shaped nuggets :)

From age 4-6  (Specific Carbohydrate Diet)
    • SCD Waffles (we finally got him to slowly switch to square waffles...)
    • SCD pumpkin bread (this was a HUGE accomplishment)
    • SCD Chicken nuggets 
    • Ground turkey burgers (again - another HUGE accomplishment)
    • SCD crackers and cookies
    • SCD Cheese crackers (obsessed = bad)
    • We finally got him to use a fork (with help) for his turkey burger once in awhile
    • We finally got him to touch, lick and sometimes bite a few different foods after months and months of food programming in ABA therapy.  As I mentioned the other day, it took hours sometimes to get him to take a bite or try a new food and we only ever got him to try 3 or 4....
    • Still overall much improved over the previous 2 years but still slow, slow change.
Let's talk about Brain Balance!

Again, no time to go over it all right now but in a nutshell  (ha ha)... Kids with a brain imbalance have a lot of sensory issues. Their brain does not properly process sensory input among other things.  Smell is the only sense that has a direct path to the brain.  A lot of kids on the spectrum can't smell (Wyatt) and some have a heightened sense of smell (Brody).   If a child can't smell, they have to rely on the texture, color or look of a food to decide if they want to eat it.  If they haven't ever had the food or it is drastically different from the foods they usually eat, or if it has hurt their stomach before, then they are going to avoid those foods.  I had always noticed that everything Wyatt ate was tan/brown in color (with the exception of Cheetos which he obviously remembered from before the problems started).  If you look over the lists above you will see tan waffles, tan chips, brown breads, etc.  All of them are similar textures as well.  Either bread types or crunchy/chip types.  If you get a fruit or vegetable or something with a totally different texture close to him he will literally gag and sometimes throw up.  Also, I had never seen him smell.  Since he doesn't talk he had never said that he could or couldn't smell things and I had never really thought about trying to get him to smell anything.  So I recently tried to get him to smell and he really can't/doesn't sniff at all!  Crazy!  So, with Brain Balance they do things to stimulate the sense of smell plus they are working and changing the brain in other ways and they said that once the kids can smell then they will start to eat more and try more foods.  I have heard that before - many times - and I have never seen much improvement.  We have seen bits of improvement but nothing drastic and whatever it was, it took years.

So - now lets talk current.  Over the last few weeks we have tried a little more to offer foods to Wyatt.  He has been a lot less resistant to at least look at, touch or even let a food get close to his mouth.  It is still a fight and we haven't really tried a lot. 

This last weekend we tried getting him to take a bite of a carrot and he did (a tiny one) after some reinforcement.  He also licked a spoon a few times with some Chili on it as well as licked some applesauce off a spoon.  We were way excited!  However, I was NOT prepared for what happened today.

He wanted my phone really badly so I decided to take advantage and had Paige get some applesauce in a bowl.  At first he did his usual ticks of licking the spoon (mostly in parts where there was no applesauce...)  and trying to get me to eat it instead.  (Cute)  Also he takes one little lick and then says "yay!" for himself as if to say - "that was good of me so leave me alone."  So finally he got little bits in his mouth a few times and was not fighting it so bad.  Each time he got a small amount in his mouth I would let him play on my phone.  I had to take an important call so Paige continued the party in the kitchen.  She is awesome and doesn't give up - you are great Paige!  Then, she came into me and showed me the most amazing thing!  She had taken this video and I about DIED!

He is not only eating the applesauce - on a spoon, but he is eating it at his own will without anyone forcing him or handing him the spoon!  (He is also wearing his blocking glasses which are important for his proper visual stimulation).  It is quite a funny sight but a quite amazing one for us!  (You should have seen the fighting and screaming to get him to wear the glasses yesterday!)  Paige said she asked if he wanted more applesauce when the bowl was empty and he said yes so she got him more.  Granted they were very small bowls, but he ate 3!

So - without further ado- I give you the video!  What may seem like not a big deal to most of you is absolutely HUGE for us!  And - after trying for 4 years and getting it in just 3 weeks of Brain Balance is another confirmation to me that this program DOES work and will change our lives.  
Watch and enjoy my darling little (big) boy  He is amazing!


  1. AMAZING! It must feel so great to finally see so much progress! Praying that it all continues!

  2. p.s. I thought of you the other day when I was at wal-mart. They have these "cotton tails" in stock right now. They are white cheddar cheetos that are gluten free and they are SO good... but they do have corn and probably other ingredients your boys can't have. I don't know how you do it! I had to cut out the gluten and starches for a little while last year and I couldn't find anything to eat! again... you are amazing!

  3. just have to say that i enjoy following along your journey!;) Sounds like things are going great! YAY!

  4. That's so awesome! I wish I had the courage and motivation to change my kids' diets like that. I know they'd all benefit from it greatly, espcially my 5 year old, who I've always wondered if she has some sort of brain imbalance. I know she's not autistic and to most people she'd probably seem more "normal" than not. But she really has some behavioral issues and a lot of them seem to stem for different types of stimulation or over-stimulation.

    I really admire you and I'm glad your blog is public. Maybe you'll inspire me to finally change my ways! I know you're busy...I have NO idea how you manage to stay up so late every night and get up so early every morning and still function the way you do. You're awesome! But I would LOVE LOVE LOVE to have some of the recipes that you use. You can email me at whenever you have spare time (haha).

    BTW, more videos! I loved that!!!

  5. I teared up watching exciting, Tammy! I love your stories and explanations. I need to document more details on my blog...I think I'll be sorry if I don't...just been a little lazy I suppose.