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.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Thursday, October 27, 2011
Tuesday, October 25, 2011
Stacylee's Story
Stacylee is a gorgeous, spunky, red-headed 4.5 year old that was diagnosed with autism (low to moderate level autism) when she was three. She has speech delays but is verbal. She has some motor planning issues and is a sensory seeker. Her strength is her physical coordination and strong will. Her other strength is an exceptionally committed and loving mother, Kelly, who keeps Stacylee's recovery a priority even though the dietary commitment is extremely rigorous. Kelly is a single mom who works full time and is involved in a local leadership program. Kelly reminds me of the saying, "If you want something done, ask a busy person."
In late June, Kelly did what she calls "SCD bootcamp" where she broke Stacylee down and built her back up. Prior to SCD, Stacylee was in constant motion and had very little attention span. Attention boosting drugs were suggested but mom thought she would give one more dietary intervention a try (Stacylee was already GFCF prior to going on SCD) first. The die off was tremendous.
Poor Stacylee was sick, lethargic, and vomiting off and on for the first four days. Kelly was very scared for her and tempted her with all kinds of wonderful SCD intro foods, but Stacylee just needed time for her belly to heal. Her body's intuitive wisdom told her not to eat. On day five Stacylee was no longer vomiting but was still not eating foods. On day six Kelly was very, very worried and took Stacylee to a local pediatric emergency group and happily discovered a very supportive doctor. Kelly explained that the food was being made available but Stacylee seemed to be starving herself.
The doctor told her she was doing a great job and to stick with it. He also told her (and I now repeat this advice to parents with a sick kid on intro, almost as a mantra) that as long as Stacylee remained well hydrated, most kids can go a couple of weeks without food before it becomes an emergency. Not that any of us ever wants to see a child refuse food for a couple of weeks, but it is good to know there is some leeway in the beginning of this diet when the kids refuse to eat! With his words alleviating her worry and some extra encouragement Kelly doubled-down and forced Stacylee to eat. She used Applied Behavior Analysis (ABA) therapy techniques to coax her into eating broth, chicken, and butternut squash.
Despite Stacylee's all-time low when she did not have the strength to physically walk to bathroom and had to be carried, the words began pouring out with remarkable clarity. Somewhere around day six or eight she said, "I want to fly the octopus kite" when she walked past her favorite kite in the garage. Prior to SCD intro she simply said, "Octopus, octupus!" Kelly counted up the words in the sentence and wrote it in a diary. To see the language skills increase even while Stacylee was physically weak gave Kelly strength to continue.
Applegate Farms nitrate-free bacon (less than 2% sugar) was the transition object that Kelly used for Stacylee. [Just to point this out, it is *not* an SCD legal food] Bacon was used to get Stacylee to eat broth and was a staple for the first two months. Kelly put bacon grease in meatballs and provided a bacon "chaser" for vegetables and fish. She used it only as a reward and eventually switched to an SCD "legal" bacon from the farmer's market.
Once Stacylee got used to the taste of broth her body craved it. She was eating 8-10 bowls a day. Kelly's biggest fear about going back to work was that Stacylee would not be able to self-feed the broth because of the fine motor skills needed. This was a big deal because Stacylee is in a special program with other kids and was not going to have the one-on-one attention her mother could give her during those first two weeks. Because of her motor skills and motor planning issues Kelly fed her like a newborn for 15 days, but Stacylee figured it out once her mom let her. One day Kelly turned her back to reheat more soup and took too long to come back and feed Stacylee. When she turned around, Stacylee was feeding herself.
Today Stacylee's language skills continue to progress. Kelly considers SCD the most important intervention she has tried for her daughter. Kelly reports that Stacylee is more present, clearer in communication, and more verbal overall. Stacylee has always been a happy child, but now is more at ease in social situations and seeks out interaction and affection. She is able to sit still and play her iPad, choosing games and navigating choices without requesting help.
Kelly also reports that Stacylee's speech therapist and occupational therapist both noticed the difference immediately after two weeks of SCD intro. They noticed and commented on the "light in her eyes" and her increased ability to sit still for learning activities. Stacylee is more open to learning now because she can physically sit for longer periods of time and her increased verbal ability allows her to also make more choices and process faster. For example, when her OT says, "Do you want to play on purple swing or the trampoline?" she immediately gives an answer and says "purple swing." Those choices previously were painfully slow and often did not materialize.
Stacylee's physical appearance has also undergone a transformation. She has gained another 3 lbs since late June and for the first time in her life has pink in her cheeks, meat on her bones, and the purple circles under eyes are gone. Kelly's mother recently visited them for first time since Christmas and broke into tears when she saw her. She said, "OMG, look how healthy she looks!" Today Stacylee still receives occupational therapy, speech therapy, music therapy, and some basic nutritional supplements to aid her recovery but Kelly credits SCD with the biggest change for Stacylee.
These days Stacylee has also developed a sense of humor. Prior to SCD she was so literal that her mother could not joke. But now she initiates jokes of her own, telling her mom, "Bianca is a baby!" and waiting for a reaction. Bianca is their dog so Kelly says, "Noooooo, Bianca is a dog, silly!" And to that Stacylee giggles with pleasure.
Kelly credits a few critical components for her success in implementing SCD: prayer, patience, and building a support network. To build her network she talked with others on SCD and communicated with everyone who would need to help implement the diet when Kelly was not present. An old African proverb says it takes a village to raise a child. Kelly has built this village for Stacylee and continues to make important choices for her daughter's recovery.
In late June, Kelly did what she calls "SCD bootcamp" where she broke Stacylee down and built her back up. Prior to SCD, Stacylee was in constant motion and had very little attention span. Attention boosting drugs were suggested but mom thought she would give one more dietary intervention a try (Stacylee was already GFCF prior to going on SCD) first. The die off was tremendous.
Poor Stacylee was sick, lethargic, and vomiting off and on for the first four days. Kelly was very scared for her and tempted her with all kinds of wonderful SCD intro foods, but Stacylee just needed time for her belly to heal. Her body's intuitive wisdom told her not to eat. On day five Stacylee was no longer vomiting but was still not eating foods. On day six Kelly was very, very worried and took Stacylee to a local pediatric emergency group and happily discovered a very supportive doctor. Kelly explained that the food was being made available but Stacylee seemed to be starving herself.
The doctor told her she was doing a great job and to stick with it. He also told her (and I now repeat this advice to parents with a sick kid on intro, almost as a mantra) that as long as Stacylee remained well hydrated, most kids can go a couple of weeks without food before it becomes an emergency. Not that any of us ever wants to see a child refuse food for a couple of weeks, but it is good to know there is some leeway in the beginning of this diet when the kids refuse to eat! With his words alleviating her worry and some extra encouragement Kelly doubled-down and forced Stacylee to eat. She used Applied Behavior Analysis (ABA) therapy techniques to coax her into eating broth, chicken, and butternut squash.
Despite Stacylee's all-time low when she did not have the strength to physically walk to bathroom and had to be carried, the words began pouring out with remarkable clarity. Somewhere around day six or eight she said, "I want to fly the octopus kite" when she walked past her favorite kite in the garage. Prior to SCD intro she simply said, "Octopus, octupus!" Kelly counted up the words in the sentence and wrote it in a diary. To see the language skills increase even while Stacylee was physically weak gave Kelly strength to continue.
Applegate Farms nitrate-free bacon (less than 2% sugar) was the transition object that Kelly used for Stacylee. [Just to point this out, it is *not* an SCD legal food] Bacon was used to get Stacylee to eat broth and was a staple for the first two months. Kelly put bacon grease in meatballs and provided a bacon "chaser" for vegetables and fish. She used it only as a reward and eventually switched to an SCD "legal" bacon from the farmer's market.
Once Stacylee got used to the taste of broth her body craved it. She was eating 8-10 bowls a day. Kelly's biggest fear about going back to work was that Stacylee would not be able to self-feed the broth because of the fine motor skills needed. This was a big deal because Stacylee is in a special program with other kids and was not going to have the one-on-one attention her mother could give her during those first two weeks. Because of her motor skills and motor planning issues Kelly fed her like a newborn for 15 days, but Stacylee figured it out once her mom let her. One day Kelly turned her back to reheat more soup and took too long to come back and feed Stacylee. When she turned around, Stacylee was feeding herself.
Today Stacylee's language skills continue to progress. Kelly considers SCD the most important intervention she has tried for her daughter. Kelly reports that Stacylee is more present, clearer in communication, and more verbal overall. Stacylee has always been a happy child, but now is more at ease in social situations and seeks out interaction and affection. She is able to sit still and play her iPad, choosing games and navigating choices without requesting help.
Kelly also reports that Stacylee's speech therapist and occupational therapist both noticed the difference immediately after two weeks of SCD intro. They noticed and commented on the "light in her eyes" and her increased ability to sit still for learning activities. Stacylee is more open to learning now because she can physically sit for longer periods of time and her increased verbal ability allows her to also make more choices and process faster. For example, when her OT says, "Do you want to play on purple swing or the trampoline?" she immediately gives an answer and says "purple swing." Those choices previously were painfully slow and often did not materialize.
Stacylee's physical appearance has also undergone a transformation. She has gained another 3 lbs since late June and for the first time in her life has pink in her cheeks, meat on her bones, and the purple circles under eyes are gone. Kelly's mother recently visited them for first time since Christmas and broke into tears when she saw her. She said, "OMG, look how healthy she looks!" Today Stacylee still receives occupational therapy, speech therapy, music therapy, and some basic nutritional supplements to aid her recovery but Kelly credits SCD with the biggest change for Stacylee.
These days Stacylee has also developed a sense of humor. Prior to SCD she was so literal that her mother could not joke. But now she initiates jokes of her own, telling her mom, "Bianca is a baby!" and waiting for a reaction. Bianca is their dog so Kelly says, "Noooooo, Bianca is a dog, silly!" And to that Stacylee giggles with pleasure.
Kelly credits a few critical components for her success in implementing SCD: prayer, patience, and building a support network. To build her network she talked with others on SCD and communicated with everyone who would need to help implement the diet when Kelly was not present. An old African proverb says it takes a village to raise a child. Kelly has built this village for Stacylee and continues to make important choices for her daughter's recovery.
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