Saturday, July 25, 2009
I Love, Love, Love my friends (OK, I watch too much RHONJ, I admit it)... But seriously, I do love my friends for many reasons -- mostly because they are a bunch of amazingly smart, fun and supportive women who are there for me when I need them. But I also love that we are always sharing ideas and resources. Many of my friends are also parents of special needs children and we are an inquisitive bunch, always looking for new biomedical, alternative, medical, educational and therapeutic treatments to help our kids. So many things that we have done with Henry, we have done because I learned about it from friends' successes -- seeing my friends' children blossom not only makes my heart sing but it also is a great advertisement for an intervention, of whatever sort. As with all things, not everything works for everyone, but if I have seen a friend have success with something I am much more inclined to try it. Of course, we also consult with our doctors, other specialists, and therapists about new interventions for Henry and it is always important to do your own homework on any treatment.
A big part of what we do with Henry is dietary intervention. This has been a critical part of his healing. Henry's GI system was in such bad shape a few years ago that he literally stopped eating because all food made him feel sick. I cannot even put into words how heartbreaking it is to have a 4 year old who absolutely refuses to eat for weeks. I heard from people, "oh, he will eat when he is hungry" and I knew, because I was living it, that this simply was not true. One night he sat for 4 hours at the table with my husband refusing to take a single bite of his favorite food (lamb chops). It stopped after 4 hours, not because Henry gave in, but because my husband could not take it any longer. We were close to hospitalizing him more than once through this process. Through work with a great nutritionist, Kelly Dorfman, an amazing feeding therapist, Tina Tan at NYU Rusk Pediatric Feeding and Swallowing Disorders Center, and a pediatric gastroenterologist, Arthur Krigsman, who is one of the few gastroenterologists in the world who really "gets" that many spectrum kids have very serious GI disease, we saved Henry (I know that sounds dramatic but he was such a sick little boy he needed to be saved). It was not easy, and it was not fun, but it was necessary.
We have done several of the "autism diets" (such as GFCF and SCD), or combinations thereof, and they have been critical to Henry's improved health. As a result, while his diet is restricted, and may always be, within those restrictions, Henry actually eats a huge variety of really healthy foods -- included many, many forms of protein and tons of vegetables (he is not a fan of sweets so he prefers veg. to fruit and has no interest in candy and cake).
Henry's diet is always in flux so we are trying new foods -- some work and some don't for him -- as we try to find the right combination for him. Sometimes things work for awhile, and then stop, which is frustrating for everyone, including Henry when we have to take away a food that previously did not cause GI problems. Lucky for us, he is a pretty flexible kid.
If you are interested in exploring dietary changes for your special needs child, there are many great diet and recipe books for parents of ASD kids but my favorite resource that brings a lot of it together is Nourishing Hope for Autism by Julie Matthews. Julie brings together critical information about all the top special needs diets. Nourishing Hope for Autism is an amazingly comprehensive book that provides an in-depth introduction to and overview of the latest information out there and helps parents understand why special diets can help children and helps parents to determine which diet/diets might work for their child.
Now we are back to where I started -- about loving my friends. Recently, I have gotten some great special-diets-friendly food sources from friends (thanks Melissa and Dara!). Henry absolutely loves the Italian dinner rolls from French Meadow Bakery (photo on the right, on a regular-sized dinner plate) and the bagels (dairy-free variety) from Joan's GF Great Bakes (photo on the left, also on a regular-sized dinner plate and that is Henry at the top, goofing off with a Joan's bagel!). I also have been making breakfast quesadillas (filling: eggs, veg, and some prosciutto (check ingredients carefully -- you need high quality prosciutto)) using French Meadow tortillas and these have been a hit. We have Joan's English muffins and pumpernickel raisin rolls in the freezer just waiting to be tried. The Joan's bagels have to be thawed either in the microwave (which I try to avoid) or on the counter and then baked and cooled, but they are worth the effort. They have a nice crisp and golden bagel exterior and a squishy interior - YUM. They even LOOK like bagels. As a real test, my husband tried one and really liked it.
One of my all-time favorite bread products is from Chebe. The Chebe products are made from manioc (a.k.a. cassava or tapioca flour/starch), which is a wonderful wheat substitute. We use the all-purpose mix, as well as the focaccia and pizza mixes. You can do a lot with these mixes -- rolls, flatbreads, pizza crusts, bread sticks, pocket sandwiches with hot fillings. The mixes are super easy to make, you add oil, eggs, and water (or a milk substitute) -- literally 2 or 3 minutes to mix and 20 minutes or so to bake. Even very young kids can help make this -- the social and educational aspects are an added bonus. Henry can pretty much make this himself now, which means I have at times come into the kitchen finding him having opened the packages and already mixing everything! This summer, because Henry cannot take his usual almond bread to his nut-free camp, I have been rolling out the all-purpose dough in a thin layer and cutting 3" diameter rounds with a big cookie cutter to make round sandwich breads. Henry takes pumpkin butter, apple butter and raw honey sandwiches to camp.
We also discovered, through the Body Ecology Diet website, some new products, including a snack that is a lot like potato chips but healthier. Arico Foods Sea Salt Mist Cassava Chips are awesome and they are available in health food stores and online (there is soy in here in the Vitamin E, Henry tolerates a small amount of soy in things like vitamin E so these are OK, in moderation, for him; the other flavors have ingredients we cannot use, but for those with less restrictive diets, they sound terrific). I also learned about Grindstone Bakery breads. My friend Dara and I ordered some together, to save on shipping. I ordered the quinoa and millet loaf with sprouted seeds. It is a heavy bread and I loved it but I think the seeds were off-putting to Henry. I am going to reorder the plain quinoa and millet loaf, since Henry was trying to pick out the seeds and eat the bread, suggesting to me the plain loaf might be fine for him. The Body Ecology Diet ("BED") is something I am learning about and incorporating some principles of into our diet, including fermented foods and beverages. I think that this way of eating could be very helpful to the whole family.
A note on all the sites discussed above, not everything is GFCFSF (gluten-free, casein-free, soy-free) so look carefully at ingredients before you order to make sure the products you choose meet your or your child's particular dietary restrictions and needs.
Another of my wonderful friends blogs at www.whattofeedyourkids.com about food issues, new products, and her own amazing recipes (and other wonderful and important things!). This site is always a "go-to" resource for me. I highly recommend that anyone facing food challenges check our her blog -- you will not be disappointed by the comprehensive, fun, and thoughtfully presented ideas and information.