Guest Post #2 — feeding the Special Needs Child

This guest post is by my oldest and dearest friend, the sister god granted me.   We no longer admit how long we’ve been friends, but the only two people I have known longer are my parents.  The Mom Butler she speaks of was the dearest woman ever, and I am truly sorry she did not live long enough to see Pamela and I mother.

 

First allow me to introduce myself.  I am Pamela Pour one of Aimee’s first friends.  I am a mother of two darling children (M 7.5 G 3.5) and the hardest working husband ever (B).  I feel I should tell you a little about myself, but where to begin.  Having always had one foot “outside the box”, I have often found myself along the path less traveled.  My passions include (in no particular order) natural parenting, natural child birth, extended breastfeeding, co sleeping, Waldorf and Montessori inspired learning, organic lifestyle, art, photography, Jo Charles Foundation, and nourishing the body.  Oddly, one of the largest focuses in my life has indeed become “nourishing my children’s bodies”.

Having had an interest in cooking and baking since I stood on a small white chair in Mom Butlers’ kitchen learning to crack eggs at the tender age of 4, the topic of food comes easily into my world.  I was baking casseroles by age 13 and had dinner on the table for the whole family by age 15.   Having never been much of a soda drinker or fast food eater, I began to learn even more about healthier eating in college and became interested in Organic Produce.  In 2000 I lived in Japan and learned about the CSA (community supported agriculture) movement, and quickly joined Maple Creek Farm in Yale, MI when I moved back to the US.  This is where my education in the “food” arena quickly matured.  Growing up my sister had an allergy to milk, so I was used to seeing a little of food caution.  But she wasn’t strict about it by any means.  I met people with Celiac Disease and Food Allergies as well as people with other food concerns.  I met awesome Farmers with a passion for the best quality food.  When I became pregnant for the first time I started researching breastfeeding, baby food, vaccines, and alternative support for a healthy child.  I also met a spectacular child birth educator (Bradley teacher) who had children with food allergies.  Little did I know how valuable her information would become to me.

After the most spiritual and empowering natural birth of our first child (M) I quickly began pulling from resources I had discovered since living in Japan.  At about 10 weeks of age, I noticed a rash on M, and within a few days it grew to cover his whole body.  He looked like he had measles.  Remembering some of what my Bradley teacher had taught me about food allergies I quickly made changes to my diet (no eggs, no wheat, no milk, and no fish).  I saw some small differences in our son, but not enough.  After nearly 12 months of struggling with traditional western doctors (2 pediatricians, 3 dermatologists, 2 pediatric allergists, and even a chiropractor) our son still looked like a burn victim and still screamed till 4am, and still scratched himself until bloody every single night.  We changed sheets every morning, and stain removal became a morning routine for all of our pajamas.  M was covered in bloody oozy eczema; he was having a lot of diarrhea, and frequent vomiting.  He was starting to eat solids and I was at a loss as to how to nourish him (besides the breast milk).  Finally I called that Bradley instructor and she referred me to the best Pediatric Allergist ever.  He worked with me breastfeeding my 13 month old son, created a rotation diet for us both, recommended supplements like: zinc, acidophilus, evening primrose, fish oil, flax oil and more – recommended fragrance free soaps, lotions, laundry detergents etc.  Finally my son began to heal.  From the inside out!  From there we implemented some NAET treatments (and wow!). 

As M began to eat more and more food, beyond “baby food” it became more and more of a challenge to feed him food he would eat, but that retained some nutritional value. I lived in terror of him becoming that bloody oozing child all over again with each bite of something new.  I struggled everyday searching to find answers.  I  realized he liked some “brown gravy” once (made with cornstarch) so we began making “Green Gravy” where we made a gravy using chicken stock and broccoli etc for Mason to dip chips or GF bread into (now we are corn free so no chips and no cornstarch).  We made Sour cream and spinach dip with carrots.  We noticed he tended towards foods that crunched, but not raw carrots.  So we began making thinly sliced carrots, sweet potatoes, Yukon potatoes, even whole Kale leaves and baked them at a low temp brushed with olive oil, drying them but not baking out all the nutrients.  He loved them!  We dehydrated blue berries and apples, because he liked it better than fresh, and well it was healthier than chips and bacon!  Pizza for us was a slice of GF bread smeared with a pesto like sauce (Nut Free: Broccoli, butter, Olive Oil and basil) sprinkled with finely chopped turkey and cheese on top and baked.  Everyday presented a new challenge.  His tastes changed, his habits changed, his symptoms changed.  But he got better!

So now you know the main reason for my passion for food and nourishing children.  I pull from traditional recipes we all eat but I convert them to make them safe for my son.  I also pull from other allergy friendly recipes but make them taste better, or make them more nutritious.  I am a scientist, learning what can be combined and what cannot.  What makes it taste better, or makes it taste worse.  What makes it something my children would even consider tasting.  Each child is so different.  And each child has different nutritional needs.  Children with Celiac Disease must remain 100% gluten free, Children with Seizure Disorders are often put on Ketogenic Diets to reduce or eliminate chronic seizures, children with Autism are often put on Gluten free and Casine free diets to help them manage everyday life, children with ADD ADHD are often put on diets free of specific dyes, chemicals and natural occurring elements which have been increasing their hyper activity.  And children with extreme or multiple food allergies must follow a diet which best suits their body and helps them achieve overall wellness.

Now we are living in China for DH’s job.  It’s a new food and nutrition challenge that’s for sure.  The quality of food and lack of knowledge on “safe” food is a daily struggle.  There are no “truth in labeling” laws, restaurant servers lie about ingredient to make a sale, cross contamination is very common, and eating out as a family requires me to prepare an entire meal to pack for our son before we leave the house.  Although this is a practice I have become accustomed to since he was very young in the US.  But when I am lax, our son is sick.  So the extra time is well worth my efforts!

Yes packing lunches and dinners out are difficult and time consuming.  Yes making rotation diet menus are difficult.  Yes making special cupcakes to take to birthday parties is difficult.  Telling him he can’t eat something other kids are eating is extremely difficult.  Keeping track of symptoms (moodiness, sleep habits, rashes, athlete’s foot, red ears, crying, fevers, stomach cramps, constipation, diarrhea, etc) is also very difficult.  But the most difficult thing for me is the lack of understanding and support of supposed “loved ones” and family.  I have become numb to the “ohhh one bite won’t hurt him!” and the “Come to Grandma. Grandma give you a cookie sweetheart.”  Why is it that, a child unable to eat a “regular” sugar/hydrogenated oil/egg/gluten filled cookie provokes sadness and tears (from family not from the child!).  But the same child covered in a bleeding oozing rash, having diarrhea, crying and unable to sleep does not?  Sad but true.

This is a topic I could write about for hours and hours.  You would surely walk away exhausted (if you are not already).  But what I will leave you with is this:  No matter what your child’s likes and dislikes are, no matter their health condition – do your best to vary their food intake – help them learn to “step outside the kid food box”.  Do it now while they are young.  Teach them that Peanut Butter Sandwiches or Pizza everyday is boring and not healthy.  Engage them, involve them in the preparation of foods they can eat and in choosing today’s menu.  Take them to a farm; take them to a farmers market.  Teach them about other children’s special food needs – be it allergy or otherwise.  Teach them that we all have special food needs (one of them being trying new things!).   There is nothing worse than feeling like there is something wrong with you because you cannot eat what the other kids are eating at the school lunch table.

The foods I prepare for our son are: Wheat Free, Gluten Free, Egg Free, Nut Free, Corn Free, Soy Free, Peanut Free and often Yeast free (except the Pizza crust).  We keep tomato to a minimum because it causes inflammation. Most baked items are also Dairy Free as our daughter is allergic to Cow’s Milk.

Some of my son’s favorite menu items:

  • Banana muffins with Enjoy Life chocolate chips
  • Zucchini muffins with flax seeds
  • Carrot and cinnamon pancakes
  • Millet cakes with Yellow and Red Bell Pepper, Bok Choi (or spinach), garlic and yes Onion
  • GF pizza with green sauce (often spinach based) and a variety of pureed veggies
  • GF toasted cheese with ham and zucchini spread
  • GF Mac n cheese with Winter squash in the sauce
  • Lamb Cutlet (bone in) seasoned with thyme, olive oil and sea salt
  • Lamb burgers (with Monterey Jack and greens diced inside)
  • Fruit Bars (GF oats, prunes, pears, apples, sunflower seeds, pumpkin seeds)
  • Broiled Salmon and green rice
  • Avocado and Chocolate pudding
  • Chocolate smoothie with banana and greens (lettuce,  bok choi, spinach, you choose)
  • Egg Free mayo dip with puree’d greens – or Sour cream dip with puree’d zucchini

 Favorite cookbooks for kids:

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6 Comments

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6 responses to “Guest Post #2 — feeding the Special Needs Child

  1. carolyn bledsoe

    Amazing blog! I admire you Pamela, for all that you do for your family. You and Aimee are awesome mothers!

  2. Pammie K

    Thanks Carolyn! I’m not a very good writer, but my story is a common one that most people like me dont get to tell too often. And the people we cross everyday at school just see us as weird!

  3. wells

    Wow, Pam I always knew you were good, now I know you are great. I enjoyed reading you blog!

  4. Hi Pammie,

    Gosh I’m gonna have to have you email me some of your awesome recipes! We are trying to get Charlie off of gluten and casein to test if these are causing some of his behaviors w/ his autism. We’ve had a couple incidences at school already this year, where he’s becoming increasingly angry or violent in the classroom and has hurt a couple teachers and a classmate. And I myself am also trying it (as a dairy farmer I am annoyed to try milk-free anything) as I keep getting this strange rash under my arm that won’t go away… sound similar to what you describe on your son actually. Treated that with every ointment you can think of to no avail and it’s in a spot where my bra rubs it raw and bleeding. Horrible.

    We are newbies at this… like in the last 2 weeks or so. And because of sensory issues, Charlie is an extremely picky eater. (his usual diet is… chicken nugguts, corn dogs, fish sticks, chips (potato and tortilla), cheese pizza, ice cream, pancakes, waffles and an assortment of cakes, cookies and muffins. We have Jessica Sienfeld’s cookbook, a kiddie cookbook by Paula Deen, and I just borrowed “The Kid-Friendly ADHD & Autism Cookbook and The Everything Guide to Cooking for Children with Autism. We also got a groovy little kitchen device called a Corn Dog Maker (basically a corn dog shaped waffle iron…bloody awesome contraption… wish I’d thought of it and made a million on it!)

    So far we are okay with corn here. I just got some GF all purpose flour, soy flour (plan on very limited quantiies of that one, probably in cookies and such for protein, make them more “meal-worthy”), cornmeal and oat flour, tapicoa flour, arrowroot so far as the new pantry staples. I already do things like puree beets and hide them in cake and make goat cheese frosting instead of cream cheese frosting. Or pumkin pancakes or pumpkin pie etc.

    We are going to my in-laws for an early Thanksgiving a week before the actual holiday (my BIL works of UPS).
    MIL was a pain in the you know what when we were just dealing with an allergy to cow’s milk and bananas. I need some recipe help, especially in regards to traditional holiday stuff (I seriously think the kid would only eat the pumpkin pie and maybe the sweet potoatoes (if allowed to smother them in cool whip). I’m gonna be limited on ingredients working with my MIL’s pantry and whatever I can find at your average walmart, and maybe packing just a few really special ingredients. HELP!

  5. Pammie K

    Thanks Grand Pat! You’re awesome! and this isnt even half of my weird tricks!

    Rebecca wow that’s a huge task, traveling and cooking. I’ve done it for years and still havent mastered it. How far will you travel? Cooler possible? My advice:

    1. premake pancakes and waffles and corndogs and muffins – freeze – pack in cooler the day you leave and bring with you for some good staple foods.
    2. cooking a holiday meal for us is insane. In fact nearly impossible. turkey – be careful of seasonings and basting. Make sure no one bastes with margarine or butter (I prefer olive oil) and be sure there are no seasoning packets – everything should be seasoned one herb at a time. Mashed potatoes, again no butter, no margarine, no sour cream. We often use some truely casine free dairy free margarine (expensive and hard to find around here) and chicken stock – or in your case, turkey stock would also work! Right now M cant eat sweet potatoes or pumpkin. But LOVES pumpkin pie. we have always let him have milk products and at this time he is not casine free. We only do REAL fresh whipped cream with sugar that I prepare. Sweet potatoes, we either do mashed or baked but NO marshmellows, no butter, no margarine (except the kind that i found that is safe). He can no longer have cranberries but I also make a cranberry and apple compote with a gluten free topping (sort of like a crisp) served hot and YUM! Again just dont use unsafe margarine.

    It’s often about being SUPER strict and finding the hidden ingredients. Look at margarine. Most will say “whey powder” or something to that effect. even Lactose. etc. It’s a real pain.

    I’m glad to post recipes but most wont be for the holiday! We spent the last 7 out of 10 Easters in Asian countries eating Dim Sum or Teppanyaki on Easter Day for instance! so Thanksgiving in China…well….Last year it was pizza! this year I am going to make a turkey, mashed potatoes, millet burgers, and maybe roasted winter squash and other winter root vegetables. I think it will just be the four of us. I cant afford to share the 100 dollar turkey! ugh! Yes we have to buy imported turkey!

    OH Watch lunch meet. Often has casine in it – even the MSG all natural stuff still there is milk product more times than not! More soon!

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