Local story of how the Feingold plan (removing additives in food) helped change the life of one boy with Aspergers

Kaelin’s Story I remember the day I told my husband I was pregnant with our third child. “ It’s a boy!” I said. “Oh wow!…another Kaelin on the way!!” my husband exclaimed. We both held a silent gaze with each other. It was filled with a mixture of joy and anticipation, but also worry. Our son Kaelin was 4 years old at this time in our lives. He had a very chatty and sometimes overly helpful older sister Ashlee, who was 5 and a half. We had spent the last few years, realizing and understanding, that Kaelin’s development, was very different from his older sisters. When Ashlee was 4, she was fully potty trained, speaking full sentences, laughing and making full eye contact. Kaelin, at 4, was able to speak one word at a time, no where near being potty trained, not smiling and laughing very often, not making direct eye contact and constantly twirled his wrists. However, I remember that what gave me solace when Kaelin was so young, was the fact that he could always understand us. He was always able to follow directions. He was also very independent and could entertain himself. This always reassured us that Kaelin was “fine”, as we knew all kids developed at different ages, but we were also worried about why Kaelin was developing so differently than our daughter. Kaelin was born on August 10, 2001. 18 months after his sister. His delivery was “text book” perfect. As on my first pregnancy, I didn’t use any pain meds and had a completely natural birth (believe me, this would change on my third pregnancy, I couldn’t say “epidural” fast enough! But that is for another story:). Kaelin weighed 7lbs. 8oz and scored a perfect Apgar score. We took him home the next day. Out of our three children, Kaelin was the most docile and calm baby. He would sleep when we put him down and very rarely made a fuss. He was so good that he spent plenty of time in his baby chair, sitting calmly and contently. This position led to Kaelin getting what is called “positional plagiocephaly”, or more commonly known as “flat head”. We didn’t realize this was happening until taking him to our paediatrician for a check up. Our paediatrician explained that Kaelin’s skull was still very soft, and that the back of his head was slightly flat. He assured us that positional plagiocephaly has NO impact of developmental/cognitive stages in babies. He gave us the option to do nothing, as his hair would grow in eventually and cover the flat spot, or to obtain a specially made helmet. We opted for the helmet as we thought all our children should start life with a perfectly shaped head (and we could foresee parent “guilt” years later...”Mom, why does Ashlee have a round head and I don’t?? You guys are the worst parents ever!”). So we made an appointment at the children’s hospital, and had a specially molded helmet made for Kaelin. He had to wear it 24 hours for the next few months. The helmet was cumbersome (especially in the hot summer months when his head was sweaty), but it served its purpose, and in a few months, Kaelin’s head was back to a perfect “round” shape. I mention this entire phase in Kaelin’s life, only to chronical Kaelin’s life. We absolutely do not think positional plagiocephaly had anything to do with Kaelin’s developmental delays. It was before we noticed the “flat head” that we would also notice certain atypical behaviours with Kaelin. Many times we would watch him from a distance in his crib. He would laugh out loud for no reason when by himself and he would extent both his arms away from his body and continually twirl his wrists. I remember thinking...”that is strange”. These atypical behaviours and movements would continue into the first decade of Kaelin’s life. As mentioned earlier, Kaelin was a late developer for all milestones, including walking, potty training and talking. However, Kaelins speech development also began to regress around the age of 3. He no longer said two word phrases such as “go mom” or “out now”. This is the point in Kaelins life, that we really began to worry. We were ok with late development, but scared about losing development. Kaelin continued to twirl both wrists continually throughout the day. He did not socialize with other kids (besides his sister) and my husband and I really worried about his ability to socialize and communicate. Kaelin was very defiant when trying to discipline him and he also demonstrated tactile (touch) and motion issues. He was also very specific to which types of foods he would eat. He would get upset if he was in motion (ie. on a swing), and loud noises really upset him. We discussed our concerns with our pediatrician. As Kaelin was normal and healthy in every other physical aspect, he suggested getting Kaelin tested for developmental delays. We learned that “testing” a 3 year old was not so clear cut. He required several home visitors from various clinicians to complete an assessment. Assessment results were not too surprising...Kaelin had developmental delays and it was recommended that Kaelin attend a daily school focusing on children with developmental delays. The school was called Renfrew Education and was truly a blessing in so many ways. Renfrew is a designated special education school in Alberta. The school (and bus) was completely funded. Kaelin was picked up everyday on a special bus right from our house. He received specialized therapy (Occupational and Speech). I should mention that I am an Occupational Therapist, however I had absolutely no experience working with paediatrics, so we truly appreciated the specialized treatments Kaelin was receiving. Kaelin also had some fine motor delays and holding a pencil or utensils was awkward. The therapists would focus on specific deficits such as his tactile dysfunction, fine motor issues and his regression in speech. My husband and I were also very happy to meet other children and parents that had similar behaviours and struggles. We were very relieved when Kaelins speech eventually began to slowly return and Kaelin was speaking full sentences by the time he finished Renfrew (age 5). He had also made huge gains with his sensory stimulation and could tolerate some movements (such as going on swings). He continued to demonstrate poor social/eating skills, wrist twirling and atypical/irrational and defiant behaviours. Kaelin attended Renfrew for 2 years, until he was expected to attend “regular” school kindergarten. We were worried (again), as Kaelin had been in a “safe” environment for the past two years, and we didn’t know how he would fit into the mainstream school system. Kaelin was enrolled into our local elementary school for kindergarten that fall. My husband I and I nervously brought him to daily half classes that year. As expected, Kaelin didn’t make much social contact with the other students, however he was very happy and content while at school. Kaelin played by himself at the various stations and he had a wonderful imagination that kept himself occupied. This is also the age that we attempted to start Kaelin into group sports. Soccer being the first sport we enrolled him in (a long list would follow through out the years, with limited success including individual sports such as karate and taekwondo. We have always been advocates of physical exercise and would incorporate some kind of physical exercise into Kaelins daily life.). My husband coached Kaelin in soccer. He found that Kaelin enjoyed some of the individual drills, but absolutely hated playing in actual games. Kaelin preferred to literally stop and smell the flowers on the field, or wander off on his own when games started. The following year, grade one began. This would mean full day classes for Kaelin. Again, worried ensued as we were not sure how Kaelin would handle full days being away from home. Grade one began, and very quickly, phone calls home from the school also began. The phone calls informed us that Kaelin was not participating in class and exhibited “behavioural “ problems. For the next 6 years, we would make several trips a year to see Kaelins teachers. The common theme was always, “Kaelin cannot concentrate on tasks, Kaelin cannot sit still, Kaelin demonstrates behaviour issues, Kaelin is easily distracted”. We would attempt to come up with solutions/plans to handle each issue, however, the solutions never seemed to last long term, and the issues would return. At home, we struggled with Kaelins atypical and irrational behaviours. They included episodes like: Kaelin would scream and cry if his sister went down the stairs before him, he would panic and scream if he saw stickers, he continued to walk spinning his wrists, he would sometimes scream and yell at us when attempting to discipline him and he was a very difficult eater with poor table manners. We would spend countless hours trying to get Kaelin to eat many foods and simply repeating/reinforcing proper eating etiquette with Kaelin. However, I want to include that Kaelin had many moments of joy and happiness. Kaelin was a kind and content child. He had a wonderful imagination and he would get excited for outings, trips, games and family members visits. He would play with his familiar cousins and he was also usually able to find one friend that has similar mannerisms and interests to him. When Kaelin was in grade 3, the principle called us to discuss the possibility of Kaelin receiving something called a Psychological Social assessment. She believed this assessment may benefit Kaelin as he displayed so many “behavioural issues”. We had often felt like “bad” or insufficient parents as the schools calls would make us feel as if we were not disciplining or teaching Kaelin at home. We wanted to do everything possible to help Kaelin, so we researched this assessment, and eventually agreed with the principle. However, we found out that the school would not actually fund this assessment, it was private pay. (The test was around $1500 at the time). We arranged and paid for the assessment. The test results confirmed that Kaelin was on the Autisum spectrum and was diagnosed with Aspergers (* Aspergers is no longer used as a clinical diagnosis and is now currently merged with the Autism Spectrum Disorder). Having a diagnosis for Kaelin gave us feelings of relief, but also apprehension. We were worried that Kaelin would be stigmatized by others for having a “label”, and honestly, as parents, we worried about how this diagnosis would affect Kaelin throughout his life. As parents of young children, we can protect, shelter, and defend our children. We can essentially control our child’s environment and who they interact with. However, our parenting goals were the same for all our children, to eventually become happy and independent adults. We thought about Kaelin’s future…would a child with Aspergers ever be able to go to university? Would he ever have a girlfriend? Will he be happy? Would he be independent? These were questions we would continue to ask ourselves throughout the years. However, we also realized that having a diagnosis had benefits. Kaelin was provided with a private aid throughout the remainder of elementary school. Although Kaelin was still not socially interacting with his peers, the one on one assistance really helped him to redirect him to tasks. We also gained connections to the Autism society and gained valuable resources about Aspergers. As previously mentioned, throughout elementary school, Kaelin continued to display atypical mannerisms and behavioural issues that included angry outbursts with defiant behaviours. We could not rationally discipline or have discipline discussions with Kaelin. He would often be angry and opposing. One time, I remember Kaelin took a knife from the kitchen and cut open his screen in his room window to jump out. We had to constantly watch Kaelin as he would wonder in public places and other peoples homes when visiting. He was unaware of social boundaries and would often not follow our house rules. He continued to have food dislikes (gagging when trying new foods), and poor eating etiquette. He also continued to twirl his wrists. However, what we found fascinating, was that when Kaelin was old enough to articulate on why he twirled his wrists, he told us “it felt good” and “it was relaxing”. I think that is a powerful message to parents, knowing that although we might find this behaviour “odd”, it really was a perfectly normal and calming movement for our son. What was very strange to us, was that Kaelin would occasionally have “good” days where he was very focused, content and calm. I mentioned these days to my paediatrician, however we were not given any rationale. Our pediatrician was well aware of Kaelins history, and suggested that Kaelin try medication for ADHD that may help him focus. We really thought long and hard on medicating Kaelin, as we were not huge advocates of long term medication. However, after a few more months of irrational and defiant behaviours, we decided to fill the prescription. Kaelin was around 7 years old at this time. We gave Kaelin one dose, and within the hour, Kaelin told us he was feeling “strange” and “spaced out”. So that was the end of using medication for us. We didn’t think the benefits/pros outweighed the cons (not being in control of your body). When Kaelin was around 6 years old, we had read about the benefits of essential fats for brain development, and started giving Kaelin cod liver oil daily. Around the age of 8 years old, we enrolled Kaelin in social skills classes for kids with similar diagnosis. The class would role play social situations with the kids. Kaelin enjoyed going to classes, however even with our constant reinforcement of social norms to Kaelin, we did not see any carry over of these skills into his daily interactions with his peers in group situations. Also around Kaelin’s age of 8, we really began to wonder more and more about why Kaelin had very occasionally “good” days. I began to do some research on kids with Aspergers and ADHD. We initially thought that maybe something environmentally was affecting Kaelin, however, after much research…I came across a diet plan for kids with ADHD called the Feingold plan. This diet plan had also shown benefits for kids with Aspergers. We decided to try it. We personally believe, that this diet change, was the catalyst that changed the direction of Kaelin’s life. The Feingold plan was based on research from the 1970s that found removing certain additives in food, can decrease hyperactivity. The research also showed that certain additives could not be broken down at a cellular level for kids with Aspergers. In essence, the synthetic additives were continually circulating in their bodies, affecting neurological and physical responses. The plan was initially extremely daunting to follow. Having three young kids, Eggo waffles with Aunt Jamima syrup, Kraft dinner and Ichiban noodles were examples of convenient staples in our house. We essentially gave away all groceries in our home, and started from scratch. We eliminated all food colourings, preservatives, artificial sweeteners and certain fruits/vegetables that are the body does not process well. I say this was a daunting task, because pretty much everything we had in our house contained one of those ingredients. We also had no idea that food coloring was also in toothpaste, ground beef, skin care products and so many other items! The plan gives plenty of examples of “approved” and acceptable foods. I would follow the website for food ideas for years. One of the things we had learned with Kaelin over the years, as mentioned, was that he was a very particular eater. He would really only tolerate a few foods. We realized that we had to pick and choose our “battles” with Kaelin. We decided that continuing to try and get Kaelin to eat a variety of foods that he didn’t like, was a waste of everyone’s energy. Instead, we focused on the foods that he would eat, and followed the Feingold plan. Kaelin would eat three main foods…chicken fingers, macaroni and cheese and noodles. He did also love snacks such as candy, chips, waffles, cookies and limited fruit/vegetables. We did spend more money on groceries as we went to specialty health food stores to find unprocessed, non artificial ingredient chicken fingers and other foods. We purchased plain chips, candy without food coloring (no more koolaide or red licorice!) and non preservative bread. I began baking weekly so that our baking also didn’t contain preservatives. Annies brand became a staple in our house for macaroni and cheese as well as other foods. **Currently, regular grocery stores now have much more options for non preservative/non food coloring foods than they did 13 years ago. The entire family switched over, as it didn’t make much sense from a health minded perspective, for any of us to be eating synthetic, processed foods with preservatives either. Within two weeks of starting this plan, we saw serious improvements in Kaelins behaviours. It actually wasn’t so much us that noticed initially, but others that had daily interactions with Kaelin. The school bus driver, his teachers, his grand parents and others all started to make comments to us like “ what is happening to Kaelin? He seems so changed!”, or “what is different with Kaelin? He is so much more relaxed! He is so much more focused!”. The changes we saw, within only a few weeks on the Feingold plan, were seriously nothing short of amazing and life changing. We were seeing more and more “good” days with Kaelin! He was calmer and more receptive to input from us. We continued with the cod liver oil supplements, social skills reinforcement, and daily repetitions on social norms/etiquette. We really saw a pivotal change in Kaelin when he entered junior high school. All of the sudden, Kaelin wanted to try out for every school sports team (he didn’t make any of the teams as he had never played when he was younger), he tried out for every club and became very involved in volunteering at school. During parent teacher interviews that year, we were surprised to hear nothing but praise from Kaelins teachers on how attentive and helpful he was at school. I remember my husband and I leaving the school and looking at each other saying “What the heck? That is our Kaelin they are talking about?”. What was even more amazing during that year, was that Kaelin started eating more of a variety of foods AND the constant wrist twirling stopped! Kaelin also became more confident and able to make friends. At the end of Kaelins grade 7 year, we received a notice to attend the award ceremony as Kaelin would be receiving an award. We didn’t know what award, but were amazed that the last award of the day was given to Kaelin. He won student of the year. Tears came to our eyes during that award. Not so much because he had won the award, but because of everything he had gone through in his life to get to this award. Kaelin would receive many more awards throughout his junior high and high school years. Both for academic achievement and personal perseverance. Kaelin found his love of drama and acting/singing in Junior high and High school and starred in several productions. Kaelin made the high school volleyball team and played competitive lacrosse all through high school. Kaelin is now currently in his third year of Computer Science at the University of Calgary and continues to act in local theatre productions. Kaelin goes to the gym regularly and is a part time waiter/bartender at a local brewery. Kaelin has plans to move out of the house “as soon as possible”. We recently just celebrated Kaelins 21st birthday, with his cute girlfriend in attendance. We have learned so much from Kaelin, both as parents and as people. He has truly enriched our lives and we are excited for what the future continues to bring for him. A far cry from when we were young parents and had no idea what the future would look like for our son. And on a side note, Kaelin is now the most adventurous eater of all our kids! My husband I believe, purely from a personal viewpoint, that something “clicked” when Kaelin entered junior high. Possibly his hormone changes clicked into gear and everything that we had been reinforcing and repeating for years, became ingrained into his nervous system. The countless hours spent re directing his eating skills, tactile, movement and social skills became second nature. The ending of his twirling of wrists while walking and his atypical mannerisms disappeared. We also truly believe that early intervention and repetition are the key to success with any child that has developmental and social delays. We don’t think it was necessarily one “thing”that made the difference with our son. We think it was a combination of everything we did. The Renfrew school at age 3, social skills classes, a diagnosis resulting in a funded school aid, constant repetition of proper social/eating norms, cod liver oil supplements, being persistent with including daily exercise/activities, and the most significant, the change to his diet. We still notice today, that if Kaelin eats processed or synthetic foods, he becomes irritable and moody. The challenge as your child with Aspergers ages into a teenager and is out on their own, is getting them to understand the life changing benefits of eliminating non processed/synthetic foods . His diet, as all of our diets, is forever changed. Kaelins future looks bright. As parents, we will always worry about our kids, but we no longer have the same worries we had for Kaelin when he was a young child. We now know he can be happy and independent. The rest of Kaelins story, is up to him. **Writers note: We wanted to share our story with other parents who may be going through similar situations with their own children. We want to note that this is purely our own experience and our own opinions. We also want to note that we are not anti medication and know that medication has worked for many children. Again, this story is completely our own experience and journey. We found that there was not a lot of resources readily available to us when our son was young. We were very lucky to have an excellent Paediatrician, who was very supportive of all our ideas and endeavours. He was also integral in connecting us to the community for initial assessments and clinicians. We hope that our journey will help other parents navigate and advocate for their child and find the solutions that work for them. We really want to reinforce the fact that parents can guide and affect their child’s development in so many ways. We want parents to know that their small, seemingly insignificant daily efforts can have a huge, long lasting impact on their child. Know that as parents, we all make mistakes, and we all get frustrated (especially on those hard days), however keep in mind your precious child and the outcome. “It always seems impossible, until it’s done” Nelson Mandela Tammie and Mike Good September 2022 Calgary, AB