One night I was sitting at my computer, utterly exhausted and crying. It had been a long day with autism at our house. She was finally asleep, and I was doing what a lot of us do, frantically searching the Internet for anything that would shed some light on what on earth we were supposed to do to help this child. Grasping at straws. After a few hours of turning up nothing, I typed Autism sucks into the search engine and hit enter. The only thing to come up was a simple white page with a few paragraphs. It said something like:

“Yes, autism sucks. Some days are really hard, and you wish you were all dead, but other days are happy- your kid learns to tie their shoes, or use the bathroom, and you have a triumph. Good days will happen, treasure them.”

This page was not connected to anything else, it was a stand alone page. Even though I don’t remember exactly what it said, it was a beacon of hope to me that night, when we were passing through very dark days. I have never been able to find it again- it was like a special message just for me on the night when I really needed it. Whoever put that out there- thank you so much for hope. If you are a person who has typed autism sucks into the search engine I hope I can send you the same message. All is not lost, you will look back and see the successes and be amazed at the difference your perseverance has had for your child. Try to remember how much courage it takes for your child to do the smallest things. I have really been inspired by my daughter’s courage. When she went to kindergarten, she used to come home and lay on the floor, and cry and say Mommy, how can you send me there every day? I hate school! Now, she steels herself and plunges into a noisy, scary Junior high every day. Teachers and students do not understand her, and many are cruel, but she is brave and goes anyway. And she is successful. Her grades are high, and she has a group of kids who she sits with at lunch. She successfully invited a friend over, all by herself. For us, it doesn’t get much better than that!

Our little girl has Asperger’s, so she is higher functioning than some, but there was a time when she spent most of her life on the ground, screaming bloody murder. This week, she placed second in the county Spelling Bee, and tenth at the regional bee. She did this all by herself. She only forgot which way to go on the stage once, which was not that big of a deal, and she self corrected it during the next round. Will she be able to go to college? Will she be able to live on her own? I’m not sure. We will cross that bridge when we come to it. In the meantime, we are going to keep buffing up her shiny trophy and move on to her next big accomplishment.

Don’t give up. Never, never give up. It will be worth it.

Our local grocer is in the process of remodeling. Because of this, they have lost about 1/3 of their frozen foods section - eliminating less popular items like gluten free bread. So to get bread we either need to make a 1/2 hour drive or make it ourselves. While we have a lot of experience and success in GFCF baking, my bread always turns out horrid!

Well, no more! I have finally figured out a quick, easy, and (relatively) cheap way to keep my kids sandwiches supplied with a bread like substance that I can make without fail. What is the secret to my newfound success? Flatbread. It’s no-rise, it stays together, and my kids will eat it. However, it is definitely not wonder bread - your kids will have to be willing to have bread that looks and tastes a little different. Mine think it tastes better and have had not a single complaint. Cost-wise it all depends on how thin and big around you roll them out - I’m getting about a loaf’s worth out of a 22 oz bag of sorghum flour - making the cost a bit less than most prepared GFCF bread. It’s been a major convenience improvement for us!

We’ve been extremely busy this month, and have been missing the ability to have easy meals - like ordering a pizza. After a bit of work, we finally came up with an easy GFCF dinner we were able to buy at our neighborhood grocery store. (Disclaimer: it’s a ‘gourmet’ grocery store for all of the rich people on the other side of the tracks…. you won’t find this stuff at Super Wal-Mart.) So without further ado - our easy four course GFCF meal:

1) Course one: Ian’s Sweet Potato Fries or Alphatots. They are both GFCF. The Sweet Potatoes have soy oil, so you’ll want to watch out for them if you are soy sensitive.

2) Course two: Applegate Farms Uncured Turkey Hot Dogs. I believe most of their hot dogs are GFCF and SF, but their website doesn’t make nutritional information easily accessible - so read the label before buying them (like you don’t already spend hours reading labels at the store)

3) Course three: Frozen veggies. Usually broccoli, as it’s a cruciferous veggie, high in vitamin c and antioxidants. Sometimes green beans or peas - especially if the organic ones are on sale!

4) Course four: lacto-fermented foods. We make our own sauerkraut and pickles, using the recipes from “Nourishing Traditions“. The ‘good’ bacteria help keep our intestines healthy and happy. They are pretty darn easy to make, and when we keep them handy (having a small serving at dinner) the sensitive stomachs seem to perform much better.

While this is still a lot more work than ordering a pizza, in 15-20 min we can have a hot meal - and if you keep the hot dogs, veggies and fries in the freezer it’s an easy meal that can be kept around long term, “just in case”. We’ll have this meal when an experimental dinner recipe has bombed.

With some serious cardiovascular and psychiatric problems - including sudden death - related to these drugs, the FDA has mandated warning labels and patient guides. What a scary position for the parents who are using these drugs with their children. I am so glad that the strongest thing we have Dorothy on is Singular, which seems fairly safe. We have been so blessed to have found other very effective ways to deal with her issues, rather than to over-medicate her. My heart goes out to anyone who has to deal with the fear and/or heartache that these side effects cause.

I was asked on one of the forums to discuss our experiences with the Low Oxalate Diet (LOD) - and thought I would post them here as well. I have to start with a disclaimer that we don’t fully follow the low oxalate diet… When we were last at our DAN Dr. (Dr. Bradstreet in FL), he recommended cutting back on our oxalate consumption - challenging us to cut our intake in half. His common sense advise was to cut out all nuts and to avoid eating LOTS of the high oxalate foods. It’s actually been a fairly difficult thing to do - especially since my daughter has ~40 other food allergies that all seem to be low-oxalate foods!

We cut out nuts 100% (so no more yummy almond meal in our Ozma Mix), stopped using lemon and orange peal in our cooking (supposedly they are super high), and started cutting back on potatoes and parsley. The hardest thing has been trying to cut back on carrots and celery, which we put in the kid’s lunches and in soups, salads ans just about everything.

It’s been hard to tell how much of a difference keeping or breaking the LOD makes. I know when I go off it (ie: I eat a whole bag of potato chips in one sitting) I seem to be a bit more ‘foggy’ the next day - but it’s a more subtle reaction than when we have a GFCF breech.

The list I’ve been using to gauge how high or low different foods are is online at: http://patienteducation.upmc.com/Pdf/LowOxalateDiet.pdf

As we were refreshing our budget for this year, I tallied up our monthly supplement costs, so I could try and work it in. Here’s what we are currently giving her:

Now, that is a good chunk of change for us - over the holidays, we were watching TV at a relatives (we don’t watch much at home) and I saw an advertisement for a BMW with the same monthly payment…. so we now have the new joke that Dorthy is our “Beemer”. We’ve tried trials phasing some of these out, but they all seem to be be important - we’ll get regression without all of them working together. The good thing is, is that we know a lot of what we can do to help Dorthy, and we’re making progress every day.

The kind of sad thing is that she used to be on 5 different prescription medicines (asthma meds, paxil, etc.) that we have been able to wean her from through better diet (at significant cost also) and the supplements. The new end cost is lower than the prescription only regimen (at least before insurance), but the burden has gone from our insurance company to our pocket. We have made some progress - we are paying for most of our supplements on our medical “cafeteria plan” - meaning that we don’t pay federal taxes on them, but it would be nice if insurance covered more.

Sometimes it just seems that you need a little chocolate to get through the day - my DW is often quoted as saying “there isn’t enough chocolate in the whole world” after an especially trying day with Dorthy. When first going GFCF, chocolate was one of the things I missed the most - which is why these chocolate chips were truly a find. They are, of course loaded with sugar, and contain soy - so they are a sometimes treat for me and not an everyday staple. (GFCF soy free chips are available and I’ll review them soon, but they are a bit waxy compared to tropical Source). Sunspire has made Christmas and my birthday just a little bit nicer, with a GFCF chip that tastes even better than Hershey’s. They make candy bars as well, but I’ve only found them online by the dozen, and I don’t think I have enough willpower to ration them, so I haven’t tried them yet - once a bag of chips is opened it never lasts more than a day - even if the recipe only calls for 1/2 a cup…

We have enjoyed so many other Enjoy Life products that I thought I’d give their “granola” cereal a shot.My first surprise was that the cereal was black - they looked very much like crumbled asphalt. I didn’t expect that at all, but it wasn’t enough to throw me off my mission. (this may bee enough to make them a no-go for a child who judges food more by look than by taste).

After adding ricemilk, I took a bite. It felt as if I was eating crumbled asphalt - they were as hard as rocks. No problem, I thought - I’ll just let them soak a couple of minutes. Five minutes later I tried again. It was like eating crumbled asphalt with an 1/8″ layer of soggy cereal on it. The box could definitely claim “Stays crunchy in milk!”.

You might think from what I have written so far that these were a dud in my book. Quite the contrary - they were actually very tasty once you got over the hard texture! We ate the whole box in one sitting. After trying the Cranapple Crunch (it was much more like traditional granola), I decided that we just got a batch where the ‘clusters’ were way too big (each one was 1/2 - 3/4″ in diameter) their crusherator must have been on the fritz.

Dorothy had a big, overnight, school trip out of state recently, and one of the big challenges to her going was the food (of course!). She is on a strict GFCF diet, and is allergic to 40 other foods - making her ability to eat at the buffet or fast food non-existant. In order to allow her to go on the trip, we provoided all of her food for her. The lunch below is a great example of what we packed for her:

Everything was packed in small ziplock bags (we normally use Reynolds Cut-Rite Sandwich Bags as they are waxed paper and Dorothy is allergic to plastic - but for the sake of not spilling went with plastic bags for the trip).

Here you can see the contents:

We packed rice cakes (as our local store was out of GFCF bread…) with GFCF mayo in a squeeze, lunchmeat, and some lettuce for an instant sandwitch (that isn’t soggy), carrots, pumpkin seeds, a pear, and some chips. Not the paragon of nutrition, but way better than McRonad’s…..

This is how we get our kids to eat hard boiled eggs, even though they ‘hate’ them! Check out our GFCF Lunchbox Ideas page for more great ideas.