Inspiring Healthy Living in Special Needs Families
I felt out of place chatting with moms on a playground at a museum in Denver, Colorado. It was 2013, and we had just temporarily moved out West for my husband's job. I was still reeling from my son Andrew's autism diagnosis that week. I had just reached into my bag for Goldfish when the mom next to me pulled out bananas and sliced green peppers. At the time, a banana and raw peppers seemed like a strange snack to me. I had never packed a whole food for a snack. I never remember whole fruits or vegetables in my own lunch box growing up.
I grew up in the 1980s in a rural area where a typical packed lunch was a diet soda, a bologna sandwich, a pack of "nabs" crackers and a a Little Debbie cake. Sitting at the museum that day, I was carrying an excess of 250 pounds on my 5-feet-1-inch frame. I had high blood pressure, obstructive sleep apnea, reflex sympathetic dystrophy, and at times, needed a wheelchair.
When I moved to Colorado, I was struck by how healthy the vast majority of people around me seemed. Moms actively climbed alongside kids on the equipment, while I stayed lonely on the bench. I was usually the heaviest woman of those around me. I remember a conversation about my son's recent diagnosis with one mother at the zoo who was eyeing me while I crunched on Doritos and M&Ms.
"Have you thought about going gluten free? Because, I feel like that has helped my daughter's Tourette's. She hasn't had an outburst in two years. I got rid of all gluten and processed food." She went on to explain that she milled her own grain for bread and homeschooled her five children. I thought she was pushy!
But, if I had to be really honest with myself, those homemade granola bites that mama had offered me were delicious and I was intrigued by her story. Later, in the bathroom, my son was practically clawing at my eyeballs to get out because there was an accelerator hand dryer, and my tears welled up and poured. It had been so hard to walk the inclines of that mountainside zoo in the baking hot sun. I was out of breath, my feet were swollen and my head was swimming with fears over my son's new diagnosis. I didn't understand what occupational therapy was, or gluten for that matter. I didn't know why my child would lay on the sidewalk, refusing to walk through a door if someone was holding it open or bawl for an hour if we took the "wrong street" home. Why did he spin circles in loud restaurants? Why did he walk straight up to kids and spout facts about train model numbers and their corresponding connecting rods instead of just saying hi?
What I did know, is that I was going to have to change much about our lifestyle, including our eating habits. I could feel it. I knew I needed to change, for myself and for my son. At the time, I just didn't know how yet.
Six years later and my husband, Keith, and I have each lost more than 100 pounds. At last check, my blood pressure was lower than my preschooler's. I have become a certified personal trainer and a certified health coach. I eat a completely plant-based, gluten-free diet and I wouldn't have it any other way. Women and their families that have many different ways of eating come to me for help with healthy-habit formation. Despite our healthy changes, my husband and I still struggle at times to motivate our sons (and ourselves) to choose healthy foods, but we are always open to learning new skills.
I have one very picky eater, but, surprise, it's not my autistic kid! Andrew's little brother, Jacob, is 4. Jacob has two rare disorders: Hemophilia Factor VIII deficiency, a bleeding disorder; and Marcus Gunn Jaw Winking Syndrome, a disorder that affects the eye and jaw when eating and drinking. He also suffered kidney failure from Hemolytic Uremic Syndrome, which was caused by the e.Coli strain 0157:H7. Jacob knows that it was beef that likely caused his nearly fatal illness and that food sensitivities potentially cause some of his ongoing symptoms. He also contracted e.Coli two summers in a row; the last one coinciding perfectly with a major beef recall. This is a long story for another post, suffice it to say, we are concerned about food for many different reasons. Partly because of his medical history, Jacob falls more in line with a typical 4-year-old, in love with broccoli one day and spitting it out the next.
On the other hand, Andrew has developed a mature and adventurous palate to which I credit our parallel growth through various therapies. Andrew is now 9 and has since been dual diagnosed with ADD like his dad. Through my own therapy, I learned that I, too, have Asperger's syndrome, which I should have known from having been diagnosed with synesthesia, a neurological condition associated with autism, as a young adult.
The journey to get healthy and manage all of our sensory and medical issues has caused my family to be vigilant regarding food and movement. After all, it's through diet and exercise that each person in my family manages our individual conditions and symptoms, from pain and inflammation, to autism-induced constipation, from attention deficits and sensory overload, to addictions and mental health factors. Through hundreds of hours of therapy for each of us in various modalities, training in positive-parenting techniques, trauma recovery and many growing pains, my family has transitioned from a fixed mindset on health to a growth one. We are in a constant state of learning flux and feel called to share what has worked for us. Here are just a few unconventional healthy pathways that may help other families.
Don't Stop Eating Out
My husband used to travel for work, so I challenged myself, whenever possible and within budget, to expose Andrew to "fancier" or even exotic restaurants. Waiters were sometimes nervous to see a stroller or small child coming, but we came anyway. Nicer restaurants had the benefit of being quiet, which gave me a chance to focus on connecting with Andrew and practicing social skills. Rarely did they have hand dryers and never toys or screens, so it was less distracting for us.
I never will forget dining in a fine restaurant with a friend and her children shortly after moving to Charlotte. We had waltzed in dirty, sweaty and smelling like animal feed from a hot day spent at Lazy 5 Ranch. We were obviously out of place in our play clothes. The children may have hidden under the table a time or two, but we were able to expose them to new, fresh-from-the-farm vegetables they would've pushed away at home. It is still one of my most memorable meals.
The atmosphere in nicer restaurants encourages children to act differently. Jacob may attempt to climb the walls, but if I never take him, he will never learn to sit at the table. Slower paced dining restaurants also encourage slower eating, which is excellent for digestion. When we chew until no lumps remain, this increases blood flow to the stomach and gut and also assists with metabolism. Eating slowly also enables us to pay attention to our hunger cues, of which most special needs children require specific, demonstrated awareness.
Many children on the spectrum have a disconnection of body and mind, or a feeling of being lost in space. I recognize that feeling from my childhood now that I understand I have autism, and it played a role in my previous obesity. I never thought of food as affecting me internally, or externally for that matter. Being mindful during eating helps us connect to what the food is doing within the body, as well as gives us time to think and plan for how it will affect our skin, eyes, face, etc. Will this food make us feel puffy? Will it give us energizing fuel or will it slow us down? How does this food impact my functioning?
Slowing down and savoring our food helps us calm the nervous system, prevent cortisol build up and discourages fight or flight, which is conducive to introducing kids to healthy foods. To encourage Jacob to learn to sit at the table until we have completed a meal, I give him the task of blowing out a candle in the middle of the table when we are done. This has helped him sit for longer at the table, and my oldest gets to have "moon lighting" as he calls the soothing glow.
For those of us on the spectrum or in the special-needs community with misophonia, being in a quieter space allows us to focus on reading facial expressions where needed and keep from going into sensory tunnel vision. There are so many benefits to a low-sensory eating atmosphere. That doesn't, however, mean we shouldn't have to be introduced to loud, bustling environments. It's important to be able to adapt to any environment. Avoiding non-preferred environments strengthens our preference and worsens apprehension. Dr. Carol Armstrong of Cornelius, North Carolina puts it well: "With each time you practice something, your brain becomes faster and better at it." What we practice now is what we are becoming, and this applies so perfectly to eating.
Get Flexible with Screens
One of our biggest problems with unhealthy eating was the television. I realized we would lounge in front of it, zone out and munch mindlessly. So when I decided to get healthy, I moved the television out of the house and into my husband's office above the garage. I reasoned we could still have the occasional movie night with popcorn; the TV just wouldn't be where we could see it from our kitchen. We also claimed more space to exercise in the living room and we replaced TV with this new nightly hobby. This was not a popular decision in my home. Andrew had many meltdowns on this for months, but I persisted.
We eventually learned new ways to get Andrew to engage with us at the table. We told stories, prayed together and strengthened our connection. We used conversation prompts. We also learned to identify true hunger this way, which is something we have to continually relearn and practice as life gets ever busier and more stressful. I credit this time without television as one of the major contributors to our new health as a family. If you cannot move it out of the house, just hide the remote until you build that basic skeleton of what life is like without it.
Now, the TV is back in the main house and we are more flexible now that the children are older. We still try to leave our phones and iPads off the table. One thing we tried for a time of transition, which worked well, was a rule of snacking in front of the TV being reserved only for fresh fruits and vegetables — no simple carbohydrates. I also learned that TV time is a great time to get my kiddos to guzzle water, because they do it mindlessly.
Give Yourself Permission to Go "Low and Slow"
I remind myself daily of this wise advice given to me years ago by our wonderful pediatrician. Normal tasks, including meals, would take longer and be more intense. I would need to plan more time for meals and expect to deal with sensory issues, perseveration (ruminating on a posted rule, for example) and meltdowns.
Andrew was prescribed a therapeutic sensory diet, including Wilbarger protocol brushing and massage. I would just need to "breathe through" my day, learning ways to increase my own patience with the dichotomy of his slower body pacing and lightning fast speech. You see, instead of the delay and regressions of speech that is typically accompanied with kids on the spectrum, Andrew experienced a delay and regressions of his motor skills. Along with his Asperger's, I was told that my son had low muscle tone, or hypotonia, and, though he was over three years old at the time of his diagnosis, had the motor skills of an eighteen month old baby. At the time of diagnosis, he had actually regressed to fisting his food like an infant, whereas just before his third birthday, he was using a knife and fork. However, his speech was that of a 12-year-old and had been advanced since he was less than 1. This asynchronous development made daily tasks, like just getting dressed or potty training, seem impossible.
Because of my Asperger's, I was forced to manage my own sensory symptoms at a time when I was trying to help Andrew navigate his own. I found that my diet markedly increased or decreased my symptoms. Gluten and sugar affected my mood, inflammation and sensitivity to noise and light. Caffeine affected my obsessive compulsive tendencies. Lack of citrus and protein affected my iron and level of fatigue. Lack of complex carbohydrates affected my tryptophan and therefore, my depressive tendencies. Certain food and medicines worsened my rigidity and black and white thinking. Exercise made me more flexible in my body and mind. I learned that eating gluten and sugar would actually physically cause my brain to swell, along with everything else in my body.
This was a life-changing analysis through self experiment that trickled to Andrew, then to the rest of my family. I become deeply interested in food and its function in the body. I actually never understood what it was like to be without daily severe sensory issues for the first 35 years of my life. They were so common, I thought they were symptoms of my physical diseases. What I hadn't known is that it was a lack of exercise and food that had actually triggered some of my diseases to begin with. After I changed my eating habits slightly, my RSD calmed. Going plant based almost eliminated it. Over time, my husband and I learned to release the intense feelings we felt, like guilt and overwhelm, in healthy ways, so that the atmosphere of the home was calm and conducive to other healthy habits.
Don't Make it Too Easy
To this day, the best advice I have received about encouraging healthy habits came from my child's diagnosing doctor in Colorado. She said it would fly in the face of most of the popular advice I would hear about autism, and it sure did! "Never keep anything the same. Don't make it easy for Andrew," she said. As I formed groups, connected with professionals and read literature on autism, the message of strict consistency was so loud, but when we moved to North Carolina, his amazing play therapist echoed his diagnosing doctor, saying, "If he wants a spoon, give him a fork. Let him figure it out." So my theme became: "The world can't adapt to my son. He will have to adapt to the world.
I credit this methodology with Andrew's advanced fluid reasoning skills. His fluid intelligence is strong, because he is used to critically think to solve problems.
There are so many other methods I have used to encourage our children to adopt healthy habits, from using apps to story prompts, to drumming up a series of extemporaneous ongoing stories like "Penguin Man" and "Cooking Train" to tracking down and purchasing specific postural supports for the table and restroom. We began using whole-plant concentrates, and enrolled the kids in karate and Cub Scouts.
Keith and I get the kids involved in cooking, let them decide their own recipes and meal plans, and use fun subscription services like Little Passports to spark their imaginations. We hold our breath (and sometimes our noses) and give up our need for cleanliness to allow them control and independence in the kitchen. We never give up on introducing more vegetables and fruits into their diets. We are always striving for progress, not perfection, and we still eat fast food, but I now pack bananas and peppers for lunch and make my own vegan, gluten-free snack cakes. ;)
If you would like to begin a journey to health with your family with special needs, know that you are not alone. E-mail me at firstname.lastname@example.org.
Jama Fleming, M.B.A., C.P.T., C.H.C. is the owner of a private practice that specializes in helping women and their families find freedom around food. She is a graduate of King University and has resided in Charlotte for six years. She serves in her spare time on the boards of several local organizations and is active at her church. Follow her on Instagram or Facebook.
For support and to make more connections within the Charlotte area, consider joining this private Facebook group Special Friends Connection - Charlotte Area.