Wednesday, September 4, 2013

My Boy "Gluten Fwee"

Some of you have heard parts of this before, but for those that haven't...

When Cam was 4 years old he got Mono. My once sweet, cuddly, though kind of quirky kid turned into a emotionally unstable, obsessive compulsive, ticking time bomb. Things that had bugged him before: his socks, clothes...Foods he had loved: everything...Done...Gone. The light I once saw in his eyes was replaced by what I can only describe as fear. He couldn’t tell me what was wrong, I couldn’t figure out what had changed and I arrived at our Pediatricians office convinced he had a brain tumor or some sort of psychological disorder. When we found out that he had Mono it was a relief for sure but getting Mono had aggravated tendencies that were there all along. This is where our story began.

Over a year later we had been going once a week to Vision Therapy for 12 months and Occupational Therapy for 18 months and we were at a road block. Not sure what set it off but after months of progress, we were seeing not necessarily regression but almost a sidestep, like we were running along the bottom. Symptoms and reactions weren’t worsening, they were changing almost like he had become so accustomed to every one adapting things for him, that he was comfortable with that and expected it. Now we were faced with this question, was he acting like this consciously or what?! It felt like he had formed a bad habit and as much as I wanted to shout “SNAP OUT OF IT!” When I looked at his eyes I knew...He was NOT in control.

By last October, I was getting phone calls from our school every day. Cam was spending a good chunk of his day in the office. It wasn’t that they were punishing him but he was a distraction to his peers and too much for his teacher. The school was MORE then willing to accommodate him. If he was having a fit over a paper he was working on (this led to screaming, crying, yelling at the kids around him to stop looking at him, and more fun antics) They would let him sit in the office peacefully and finish. I would get calls that he had spilled on his shirt and I needed to bring a spare for the spare he had already changed into. He wouldn’t like the library book he got because  he “didn’t have enough time to find the right one!” He would throw full on tantrums in the hallway. Sometimes becoming so upset he would bang his head against the wall and scream "I HATE MYSELF!" All the kids in our Pre-K through 8th grade school were noticing now.

At the lowest point he started being physical with others. Somewhere around Halloween he began lashing out at anyone who looked at him funny. He was painfully aware of how he was feeling and when it was acknowledged by anyone around him he went nuclear. Hitting or pushing. I received a text from his Kindergarten Teacher from the year before saying Cam was in the office again! Was there anything she could do to help. He was spending more and more time in the office... I knew that, but hearing from her made it real. The wheels in my head started turning.

In November we again went to our Pediatrician. She knew Cam and what we had been dealing with. We had always said meds weren’t out, but they were last on our list of options. So when I sat in the exam room crying I knew what was coming. We had been trying everything. I had almost convinced myself to pull him out of school and Home School him, knowing that was the last thing I should do (he needed socialization skills) but not thinking I could handle one more phone call from school. In that appointment we went over a lot of things. I got the name of a psychologist, a psychiatrist, she said we could talk to our school district to see if he applied for any help. There was also the mention of going Gluten Free and of course Medication options. While imagining going Gluten Free for Cam was overwhelming, the alternative of medicating him was heart wrenching. All I could imagine was a shadow of the child I loved so much. I had heard stories of kids going from dynamic and full of life to almost a zombie status on meds. If that was the route we eventually had to go then fine, but I wanted to feel like I had exhausted EVERY option first. I was already feeling at the end of my rope. I left the appointment my head now spinning.

To make matters worse, my husband and I were a little at odds about how to deal with this. He saw how Cam was and he knew my frustration but he was at work all day, while I dealt with it head on all day at home. He wasn’t getting the phone calls from school, doing the walk of shame down the school hallway to go either deal with him or pick him up depending how bad it was, or managing the tantrums except when he was home. He walked a fine line of really wondering if Cam was just being naughty. He knew better but he was of the school of thinking that things like this were “in our heads” and we needed to just NOT do them anymore. The thousands of dollars, countless hours of discussing and the hundreds of miles we had logged back and forth to school and therapy, was all too much for him. He knew I was going to do what I thought was best and frankly I think it made him feel better. He wasn’t sure WHAT to do. I walked a fine line of wanting his help but not wanting his help. We were treading water. This was affecting our ENTIRE family. Our WHOLE life. So what to do?!?!

Where to start? There was SO much info and which did I try first. If I have learned anything in the past it is that I don’t do well with overwhelming, so I decided to start crossing things off the list. Starting with the Psychologist since she was already connected to his Occupational Therapy center to see what her thoughts were. Had this evolved into a behavioral issue? I just couldn’t convince myself that he was just being naughty. Next I met with his teacher (again!) I wanted to know how she saw Cam’s behavior and did she think he would qualify for any help from the public school district. She didn’t think so but encouraged me to go that route if I felt we needed to. In that meeting we decided to make a time when Cam wasn’t at school to discuss with his classmates why Cam acted the way he did. She had gone through a local School District Library System and found a book about a child with a Sensory Disorder. It was so like Cam. I read it to Cam. Reading a story about a kid like him. His eyes lit up. "That's like me!" He couldn't believe it.

I came to the class one Wednesday morning while Cam was attending his weekly therapy sessions and talked with the class. I told the kids I knew they had noticed that Cam got easily upset. I told them it was ok to wonder about it and that is why I was there. We read the story. I brought tools he uses to do his Vision Therapy and Occupational Therapy. I even brought in a piece of sand paper and a t-shirt he hates because “it’s scratchy.” I explained that to them or I the shirt feels fine (though not the softest) but to Cam it felt like the sand paper on his skin. We had them try his vision exercises and answered any questions they had. I left hoping we had sparked at least some understanding for Cam. I couldn’t stomach the thought of him being labeled a “weird-o” or just a “bad kid.”

The next day I got an email from his teacher, telling me some observations she had made in the class that first morning he came back. A couple of the kids entered the class before Cam and immediately started a conversation about how they could make the day better for Cam...then when Cam came in a few more kids started talking to him about how they didn’t like when the tags on their shirts rubbed on their necks and one didn’t like wearing a coat over a sweatshirt because it was too bumpy. Mission Accomplished...Empathy! Success!!

So now besides medication, Gluten was the last thing to try. We love to cook in our house. We have no other allergies in our family so the thought of changing his diet was DAUNTING! Since having Mono he had become so picky. In fact he had become what I called “a Carb-o-holic.” Our doctor had said that a lot of times, the things we are intolerant to, are the things we crave the most. This would be very telling because in Cam’s case he CRAVED bread and frozen waffles more then any other food. He had become famous for sneaking into the freezer, stealing frozen waffles until the package was empty. Because I was so overwhelmed I started there. Bread and waffles, that’s it. I bought Gluten Free bread and Gluten Free toaster waffles. That was at the end of last November.

Within 3 weeks we had noticed a HUGE change. The tantrums were less and less, he was even willing to try wearing different clothes then the standard shorts and one t-shirt he usually insisted on wearing. His teacher was blown away. She herself is Gluten Free and even so she couldn’t believe the amount of patience he was exhibiting already. I held my breath. As with so many other things we had tried over the past couple years, there was always a honeymoon stage. Was this it? I was cautiously optimistic.

We had decided to be upfront with Cam. Explaining about the Gluten and why he wasn’t eating it. He took it great. He felt special. I made sure to write on his stuff “Cam only” which he thought was cool. We branched out buying Gluten Free cereals and other products. I probably spent 3 times my average grocery budget that first month. Just looking for the products that tasted good. If I knew anything, it was that Cam was going to get sick of this really fast if he wasn’t able to eat goodies like his friends. We don’t actually eat a lot of processed stuff regularly but I wanted to keep Cam interested so I sought out the best tasting of the Gluten Free. I went to friends that had been Gluten Free for years and piggy backed on their trial and error buying to find out what tasted good.

Then I looked at what we were eating as a family and figured out how to improvise our go to recipes in order to make it Gluten Free for everyone. Buying “normal” products that were Gluten Free as it was. Anything that markets itself as Gluten Free is going to cost more. I even spent $8 on Gluten Free Ketchup before realizing most ketchup is already Gluten Free...Lucky for us, being Gluten Free is very popular right now so there are tons of options even at the regular grocery stores in this area like; Safeway, Haggen’s, Fred Meyer, QFC, Albertson’s, and Central Market. We are also lucky to have several Co-op’s in the area as well as Janell’s Gluten Free Market for the hard to find items.

At one point we were asking ourselves the question, “Is this seriously what is helping him or is it just that he broke the habit, what?!?” It just seems crazy that his diet could be this involved. Flash to a weekend 6 months ago when we were out to eat with friends in Portland. It was the first time we had really ventured out since switching him and since we really went Gluten Free. We were all hungry and not sure where we were going, and we ended up in a neighborhood restaurant that was more of a Pub Style. Not a Gluten Free option to be found. This was our first time really out with a gluten free kid. We just figured what do we do? move 10 people to another location? We decided, “Well, what’s the worse that could happen. He isn’t deathly allergic...we’ll just order him pizza and hope for the best.” BIG MISTAKE! At this point Cam had not had ANY gluten in months. By that evening he was crying uncontrollably about EVERYTHING, he was back to screaming if any little thing didn’t go his way, like when the blanket fort he was building caved in, again and again. The next morning he woke up with black circles under his eyes. He cried most of the way home from Portland to Seattle. Low parenting moment. BUT an important one nonetheless because it made us aware that THIS IS WHAT WOULD HAPPEN. Another low parenting moment (months later) when I accidentally gave Cam his older brother’s lunchbox (they look identical, in hindsight a bad choice) He even realized the sandwich was a Gluten Sandwich and tried to tell his substitute teacher who replied “Why would your mom send you a Gluten sandwich if you are allergic (answer: Because his mom is sometimes sleep deprived and running around making lunch like a crazy person!"..."You need to eat 1/2” She thought he was just trying to get out of eating....Understandable but Not good! He had a rough one the next day.

What I think is interesting is that since switching Cam he eats less of the Carb items. Where he may have gone through (and snuck) 10 frozen waffles in a day, now he is maybe eating 2 at breakfast, if that? He has begun eating WAY more fruits and veggies. Because we talk about balanced nutrition he will ask things like if he should eat an egg for protein. I am also trying to be very understanding that sometimes it is really hard for him to be Gluten Free. Most days if there is something that looks yummy to him he will ask if it is "Gluten Fwee" and when told no he will opt out of it. In a rare case, he wanted a bite of a churro at a Mexican restaurant and we gave him the choice. You may eat that bite, but that doesn’t give you a “get out of jail free” card. If you end up feeling crummy from it, you don’t get to throw a tantrum. Lots of people get through their day not feeling great and not accosting those around them. He has had an AMAZING strength in withholding from things he knows he loves.

It is a work in progress. The cooking, lunch packing, etc. is getting easier. The traveling and locating Gluten Free friendly establishments WAY easier thanks to handy apps like Find Me Gluten Free. People hear more and more about Gluten Free so they are more understanding. And Cam keeps getting older and more mature and HE FEELS SO GOOD being Gluten Free he is willing to do whatever it takes. How he was, is very much at the front of his mind and he has no desire to go back.

Did going Gluten Free “cure him?” No! The things that bothered him before are still there. His Sensory Processing Disorder will ALWAYS be there. He will always tend to fall on the O.C.D. part of the spectrum BUT the Gluten that was aggravating his system is out and he can now HANDLE the things that bother him. “This is a marathon not a sprint”...”We have won the battle not the war” these are phrases I repeat weekly, sometimes daily, sometimes hourly...But since going Gluten Free Cam is nearing graduation from Vision Therapy, and he has gone from attending O.T. once a week to once a month.

My husband who once was skeptical is a Gluten Free Convert :) He touts the effects on Cam and our family all over town :) He said to me a month or so ago, that the light is back in Cam’s eyes. He was recalling how “blank” he looked merely months ago. I catch him shaking his head in disbelief when he watches Cam running the bases at baseball with a huge smile on his face. Interacting with kids he would have screamed at last baseball season. This has been LIFE-ALTERING! There is not a better way to explain it. Cam has a better relationship with us and with his 3 siblings. They look out for him. Being sure things he eats are Gluten Free. If he has a moment of frustration the first thing they ask is “Did you eat Gluten?” We have to remind ourselves that he is 6 and is bound to have a meltdown as ANY 6 year old might.

At school, he has made some friends! He has not visited the office in MONTHS! His report card which sported about 10 minuses in the first trimester, went to all checks which means he is at standard and pluses meaning he is exceeding standards in other places. His teachers remarks on his report card this trimester said this:

“Cam is like a new student. He is working hard, cooperating more often and putting a lot of effort into his work. He is showing a lot less frustration with his abilities. He is tolerating activities which were SO difficult for him only a few months ago. I hope this continues and we can focus on academic progress now. Cam seems to be getting along well with others. He is proud of his accomplishments and so am I”

People keep saying “Cam is like a new kid!” But to me Cam is BACK! He is himself again! The kid who snuggled me so tight and wanted hugs years ago...The kid who had the sweetest laugh and the biggest smile...He has returned! While going through the darkest parts of all this I had blocked those things out as distant memories, not really thinking I would ever see them again. Yet, here we sit. Cam is dancing in the kitchen behind me as I type this. Laughing with his sister and asking me where his “Gluten Fwee” Pancakes are.

We’ll keep doing what we are doing. I know there are things that will arise as the years march on. Knowing we made it through this last year gives me a renewed sense of strength, that we can make it through anything.

UPDATE: So since I wrote this 2 months ago I already have changes to report. After a great Summer (albeit a very FAST Summer:) Cam hit a threshold I knew would at some point come. In the past few weeks he has started asking questions like "why do only I have to go to Thewapy?" And "why do I have to do extra homework?!" I hear "Is _________Gluten Fwee?!" a LOT more then usual. And on vacation after the 10th time a restaurant sweetly brought the bread basket, he hung his head cried and whispered "I just want a bite of bread" :( He has been sad and questioning all the adjustments he has had to make this past year and rightfully so. The fact is, he doesn't think its fair and sometimes I don't either. We have been doing a lot of talking about the fact that everyone is different and that everyone has their cross to bear. He is at an age that even without a sensory processing problem, gluten intolerance and visual weakness, he would be looking at the world differently then he did a year ago. His new teacher called it the Age of Reason, when we met the other day. Luckily for Cam and us, we are blessed with incredibly supportive family, friends, school, health professionals and community.
In this journey I have been so blown away by the kindness and empathy in the world. I am still just trying to give him the tools he needs and will continue to. Being on vacation and being less in control of what he ate, it is obvious we need to remain ever vigilant with his being "Gluten Fwee" :) He knows it and we know it.

He told me that his goal this year is to make good friends. He has friends but he says he wants his friends to be really real or "weally weel, like the kind that have play dates" :) I told him that was sure to happen if he kept working hard and being himself at school. I hugged him last night after letting him know he was going to be taking a break from "vision thewapy" for a while. I told him I was so proud of how hard he has worked every day to feel better. Having been working on my own dietary needs I know it isn't always easy and I marvel at his fortitude. I know this is a bump in the road and given that it is the 2nd day of school and no phone calls yet...Fingers crossed...I'm sending this out to the universe...a silent prayer...a wish...

...please, PLEASE, PLEASE make this his best year yet :)

For anyone dealing with living "Gluten Fwee" please feel free to contact me at
I am always looking for G.F. recipes and support. We need each other to not only survive but thrive! That is for sure!


Lucy Wall said...

This post made me cry! What a good mommy you are and what a great kid he is. You really are such a great example of patience and love for your child! Glad you are blogging again, i need all the tips I can get for healthy eating!!!

Helena said...

Ashley, oh my God this is absolutely full of love! You are a mother to admire...
Ian often talks about his friend Cam...I believe Cam has the most sweet smile...
Keep up the great work
P.S I just now have a chance to read your blog

Ashley said...

Thanks to all :) Support is what keeps me going! I have had so much positive feedback and it feeds my soul and my cause! In this life we are all in it together :)