Thursday, October 27, 2011

Maddie's Story

Maddie is a beautiful young girl who has stolen my heart. Maddie's mom, Janice, is a friend of friends and now a friend of mine too. We initially connected via our mutual friends because they knew what I was doing to help recover ZiZi and couldn't help but wonder if it might help Maddie as well.

Maddie is almost five years old and has been diagnosed with autism. She is non-verbal and usually when she is at my house she wanders around, mouths on things, sometimes eats chalk, and does not interact much with the other kids. My oldest daughter, Ani, tries pretty hard to get Maddie's attention and I remember an early visit when Janice was surprised that by the end of the visit they were seated together. Apparently Maddie usually shied away from that sort of thing. But Ani has a way with people and like her mama doesn't always take "No" for an answer.

I met Maddie and Janice when we were in the "biomed" portion of our recovery. We were on a ton of supplements and spending a lot of money on labwork, but we were getting some noticeable results. I passed along anything I learned to Janice. At that time I talked to Janice about a gluten-free, casein-free diet and the importance of giving kids real food, not prepackaged snacks. That first step was a lot of work and Janice has three other children and a husband who need time from her as well.

Then our family started SCD / GAPS. It was a wonderful change for ZiZi and her communication skills skyrocketed. I started talking to Janice about this dietary option. I couldn't help but think that Maddie was "in there" in her brain and all we needed to do was unlock her so she could tell us what she was thinking. I said this out loud to Janice once when they were over and Maddie stopped her random bumping around. She turned and looked at me and stared into my eyes in a way that gives me goosebumps even now when I think about it. It was like she reached right out and grabbed my soul. I felt bonded to her after that day.

So I called Janice every now and then and checked in. I would not let go of the idea of Maddie on this diet. I was probably the crazy small, cartoonish dog hanging onto the back of her pants. Her life was intense and she had a lot of people who needed her. Her mom had a surgery. Her father passed away. Life was really tough. I felt so trapped in my own kitchen that I couldn't offer much. All I could really do was just let her know I cared about her and her daughter.

This summer, when all the dust had settled, I told Janice we needed to give it a shot. She told me that some professionals she trusted had told her that diet wouldn't do anything. I countered that there was no down-side to feeding her daughter really healthy food for a few weeks to see if it would help. The wonderful thing about this diet is that there is not much "risk" or down-side to giving it a shot. Particularly if you begin with the full foods menu rather than starting with the dreaded intro.

So around August Janice made the switch. It has been almost three months and although Maddie occcasionally gets some foods that are not allowed on the diet her mother is working like a maniac, trying to make sure she has what she needs.

In the past three months Maddie has begun to pay more attention to people and to her program (her school and therapy exercises to help her learn). She has even become more aware of her surroundings to the point that her feelings are occasionally getting hurt now, for the first time in her life. This emotional capacity is a very big milestone.

Maddie is also no longer pulling hair. This had developed into a big problem over the summer and her mother had to leave the park more than once because of it. Maddie is much less agitated and aggressive. She is now more affectionate and seeks hugs and kisses. She wants to play with her younger sister and they are able to laugh together.

Maddie is listening to the requests from her parents. When they say, "Come here" or "Sit down" she is focused on what they say and able to react appropriately. Janice called me a few weeks ago thrilled that she had told Maddie her burger was hot and to blow on it. She said Maddie looked her in the eye (like, "Got it, Mom!"), turned to the burger, and blew on it. This may sound like a small thing but it was a big change.

Maddie is also initiating communication via sign-language with her family members. She is able to communicate her wants and needs which is a massive breakthrough. And last, but not least, yesterday she used the potty for the first time.

Maddie's improvements are noticed not just by her family but also by friends and her therapists. The only thing that has shifted in her routine is her foods. Her body craves the healing broths. She happily eats sauerkraut and meatballs. Her mom, like many of us, can barely make it out of the kitchen long enough to take care of all the other things that need to happen in a busy household. But somehow she holds it together and dares to hope for what the next 6-12 months can bring for Maddie. Janice is my kind of hero. She may not be honored at some charity gala this year but one day she will have the sweetest reward of all. One day, I dare to dream, Maddie will tell her mom that she loves her. Out loud.


  1. Hi Kati!

    We are on the same journey, but living and working in Central Africa. I have this same hope for many of our friends dealing with severe food allergies or autism. We've been on SCD/GAPS for 5 months. Thanks for putting more info. out there!

  2. Oh Kati this makes my heart so glad!!! I have loved Janice and her whole family since before Maddie was born, and have loved Maddie and hoped fervently for breakthroughs just like you have described. I know the next several months will bring more tremendous changes, and I look forward to witnessing Maddie emerge more and more. Thank you for believing in Maddie. She is indeed a special girl who most certainly is "in there" and is on the cusp of even greater triumphs, I just know it.