yet another acronym

Well, it seems like I can add another acronym to my balancing act…PTSD. We’ve barreled through ADD, ASD, IEPs, OCD, TBI, CT Scans, MRIs, EKG, CBC, CUTE (Crazy-Unpredictable-Toddler-Exhaustion…just made that one up!), ABA, SPD, DRI, PICU, GFCF…

…but coming home from the hospital with J from his last brain surgery, was such a relief that I let down my emotional guard down long enough to take a deep breath of fresh air but it was met with extreme resistance. Shaking, crying, sweating, screaming, and more shaking. These fits passed through me for no apparent reason. Sure, there are some obvious triggers, but it came on like waves. Violent waves met with a strong, sand bagged levy. The first two weeks were miserable. One constant panic attack. Then I thought it was over. I was proven wrong as now it comes and goes intermittently.

I am going with this. If I fight it, I feel like it’s going to be worse. So, I’ve eliminated any outside contaminants…no alcohol, no fingernail biting. I need clarity. Pure, raw thoughts and reactions and feelings.

Resisting my strong desire to numb these emotions and uncontrollable feelings with a delicious glass of chardonnay, I’m left to face the demons on my own. The emotions that I wasn’t able to deal with when I was in survival mode during those first few months. Unable to let down my guard enough to sleep. Holding it together. Barely holding it together yet at the same time wound tight enough to repel any other emotions that might seep into the stature that I was trying to keep. That was necessary to keep.

Now that I’m at the 6 month mark, I’m able to process this. I’m able to finish this post that I started 3 months ago. Fits of panic that rush through me at any given time without warning have diminished some. They still do come in waves. There is no warning. The middle of Costco, playing at the park with the little guys, or making dinner. I am completely powerless to them. I’m thankful that I’ve been able to barrel through this. They will decrease in time. I’m sure of that.

Prior to this change in our world 6 months ago, anxiety was not something that I had experienced. I had some serious anxiety about time. Interestingly, now that has completely disappeared. Time is a whole different concept. Yes, I’d love to get places on time, but the obsession with being on time has been replaced with an anxiety of just being there.

‘gluten-four’ makes my tummy hurt

Oh, Oliver and his sayings. I love him. Today he had a very heartfelt conversation with my sister, Malia, on the phone about going to Trader Joe’s. He said that he bought ‘gluten-free’ because gluten-free made his tummy feel better and had the purple signs (the signs that they use at Trader Joe’s to signify that an item is gluten-free is a purple sign). Then he said that orange juice also protects his tummy and makes him feel better. He then told her that ‘gluten-four’ made his tummy feel bad. I gather that he has interpreted ‘gluten-free’ to be ‘gluten-three’. What a nut. I haven’t had too many conversations with him about this so a lot of this has really been about him picking up on the conversations that I have about gluten-free diets with my mom, sisters, and friends. He is incredibly literal. He makes me chuckle 😉

shoestring potatoes are gluten-free!

Yes! Hallelujah! Shoestring potatoes are gluten-free! What a joy. Trying to remain optimistic, because I am a true optimist, but honestly, life can be sad and depressing whilst also being happy and lovely. Finding a balance in this world raising these 3 boys is a challenge right now. I do know that in sad there is happy, and in happy there is sad. Ugg…I need a balance. I feel that it fluctuates between super happy and super sad in a moments notice, if even that. I don’t want to complain. I hate complainers. I want to tell them to buck up and live life. I want to tell myself that. I tell myself that. I hear myself saying that. I am doing that. And with that I feel hope and love and pure joy. The utter pain of autism in our lives and the utter joy of it is a lot to bear sometimes. I don’t want to say ‘I’m overwhelmed’, but I am. If it were just autism, maybe I would be fine. If it were just a teenager, maybe I would be fine. If it were just a feisty toddler, maybe I would be fine. But the combination of trying to anticipate the needs of all three of these beings in addition to a marriage and a home is a lot. Thank God for Glee. The happiness in my week has been the return of this show. How crazy is that! It is something that I can count on. The rest is not as reliable.

I’ll just have an apple and peanut butter

Since diving into the gluten free casein free diet for O 6 weeks ago, I don’t know what to think. Behaviorally speaking, I see no change. This is where I had really expected to see significant change. Where I do notice change is in his focus and also language acquisition. Quite significant actually. I am really going to have to consider how much of a difference it has made because the food situation with O has gotten out of hand. I honestly don’t think that it is because the restricted aspect of this diet. We have done a very careful job of allowing him to eat the foods that he wants. Peter’s new trick is to take a gluten free hamburger bun to Dick’s and swap them out in the front seat before O catches wind of it. I took his lead and have been carrying gluten free hot dog buns in my bag when we go to the Museum of Flight or to the Children’s Museum.

We’re figuring out that trying to get O to eat a proper meal is kinda out of the question at this point. So…I’m trying to pack calories and nutrients into him during snacks. And earlier in the day he will eat more. Come dinner, forget it. It’s enough of a struggle just getting him to sit in his chair, furthermore putting food into his mouth, chew, swallow and digest. There are days when I think that the only thing that he will eat is apples and peanut butter. Not any apple and not any peanut butter of course. The apple must be fresh from the fridge, cut into wedges, peeled. The peanut butter must be the extra country JIF that has the blue cap from Costco. Just writing this makes me cringe. I have learned that one should not ever try and substitute a different, perhaps better quality, organic peanut butter, nor should one even consider leaving the peels on the apples. On the upside, the calorie content is good and there is iron and protein in the peanut butter. The apple is 80 calories. The peanut butter is about 190 calories/2T. Over the course of a day he’ll probably eat 3 apples (240 calories) and more than a half a cup of peanut butter (760 calories). That’s 1000 calories. In a web search, I found that a child of his age and activity level should consume approximately 1400 calories. So, that’s not bad. I’ve been telling myself over the past couple weeks that Temple Grandin would ONLY eat pudding and jello for the longest time and she’s now over 60 and a functioning member of society.

I spoke to our doctor about this and she said that we should have seen the benefits by now. This is food for thought as we decide what to do moving forward. If we were seeing huge differences, I would stick to this diet like glue. I just don’t know if it’s worth it. The time, energy, cost, brain space. I’m know that there is going to be a happy medium for us, but I don’t know exactly what that is going to look like.
Continue reading “I’ll just have an apple and peanut butter”

what’s the deal here?

okay, we’ve been doing this whole gluten free casein free diet for 3 weeks now. I am stopping to ask myself at what cost? What am I expecting to accomplish? I thought that I was seeing improvements at first. Was I imagining that? It’s not like autism is quantifiable. Perhaps if he was a number on a scale, say a 34, and by doing this diet for 3 months would bump us up to 38 or a 40, it would be worth it. I’m not seeing that. Initially, I thought that we were seeing improvements in focus and fewer tantrums. Yes, there should be data collection involved in this but believe me, at the end of one of these tantrums the very last thing that I am thinking is, ‘let me record this on a whiteboard’. What I am usually doing at that moment is praying to heaven above that I can gather enough information and perhaps some insight from that moment to make the next time better. Lets see how much time and effort went into this diet today. Spent time finding a gluten free hamburger bun recipe. Bought the ingredients at PCC while Oliver was at school and my mom was watching E. Spent a fortune. Came home and put the 14 obscure ingredients in a bowl, mixed, waited while they were rising. Cleaned the mess up. Baked them. About 2 hours elapsed. Oh, did I mention that I did this one handed as I had surgery on my left wrist? (can you sense my irritation?) All in all, they were okay. It was nice to have a home baked item as a part of dinner. I do know that everyone appreciated them as well. But the bigger question is…is this worth the effort that I’m putting forth? What else could I have accomplished with that time and money? I could have done a fun activity with my mom and the boys. Also, is this worth the sacrifice of the rest of the family? The nearly unpalatable breads, sending Julian and his friends to the garage to eat girl scout cookies so as not to upset O, the tantrums over food. We will persevere until Easter and then revaluate. There is just no well researched data that is making me stick to this for our family beyond what we allotted for. If you have any concrete information to make me stick to this further, PLEASE let me know. I would also love feedback on if I decide to reintroduce gluten or casein back, which it should be?

On a different note, I feel fantastic! Less general inflammation, more energy, less bogged down.

What am I missing?

Just when I think that everything’s better, out of nowhere, there are plates hurled again at breakfast. Thank you, Peter, for catching that one before the carefully peeled potatoes made their way across the kitchen.

So, I’m revisiting the morning and wondering what went wrong along the way to spur this behavior. What were the signs? What could I have seen but didn’t?

Oliver came downstairs smiling and prancing, seemingly happy to see Emil and I. He ran to the sofa and did a headstand. This is what he usually does. The pressure on his head seems to be soothing to him. I was making breakfast, Emil was playing with playdoh. Oliver was chirpy and grinning. I gave Emil some potatoes. He was eating them happily, minding his own business. I asked Oliver if he wanted some potatoes, too. He yelled, ‘I hate potatoes’. I ignored him. I then asked him if he might like some ketchup on them. He yelled, ‘I hate ketchup and potatoes’. I didn’t react and decided to switch from the topic of food to drink. Somewhere during this time frame, he asked if he could watch tv. I said, ‘maybe later’. I think that just added fuel to the fire.

Then Julian came downstairs and gave him a hug and said ‘good morning’. He didn’t revolt against that. Peter came downstairs and asked him if he’d like to join us at the table. He sat down but then stated that he wanted the potatoes peeled. He said, ‘sure, no problem’ and peeled his potatoes. Sometimes Oliver needs to get his way a little bit but then he’ll get on board with the plan after you give him a little control. Today that just further enraged him. I made some eggs for the other two boys with butter. Oliver never likes eggs, so I figured that it would be okay to cook them with butter for the other boys (Oliver’s not eating dairy/gluten). Then, he says that he wants eggs. I put a piece on his plate. He then started freaking out that he wanted a bigger piece before he even had any. Then we had a full fledged tantrum starting. Plates being flipped over, etc. Peter took him upstairs.

A couple hours later…he won’t eat more than two bites of food. He wanted a waffle. I made one. With chocolate chips and maple syrup. He ate two bites. Then he saw the left overs from breakfast and wanted the potatoes again, with no skin. Okay. Done. He ate two bites. He said he’s not hungry. My mom said to make him a milkshake. Good idea. Made him one (dairy/gluten free of course) with a banana in it. He drank about 1/2 cup.

Is it the gluten-free thing? Has he lost his appetite for food because of that? Is that causing him the tantrums? Is it that he was sick the past few days and he hasn’t eaten so he’s not hungry yet? Prior to this I was noticing how well he was doing. Fewer tantrums, better focus. More creativity and lots more laughter. He was bee-bopping around here last week in great spirits. He was also easier to talk into things and push the boundaries a bit. Now that he doesn’t seem to be feeling as well, he’s not at all flexible and is not easy to get along with. He simply cannot rebound well.

I wish that I had more answers for my questions. I feel like when we have a string of good days in a row I get closer to figuring this out. Then we’ll face a health set back and it seems like everything that we learned doesn’t work and the rules have been rewritten.

one week down

Well, after this evening, the gfcf diet doesn’t seem like such a big deal. We have the most delightful babysitter. She texted me that E had thrown up. After my autism support group meeting I headed home to help deal with the barf situation. E was fine and running around being absolutely darling. O was a disaster. Darnit. I guess that he was wondrous all evening until E threw up. I am beginning to see a trend when the shift in attention diverts from O, he (sometimes) loses it. Gosh, who knows! O basically lost it tonite because of no real apparent reasoning. Well, real and apparent in my world has a wholly different meaning in his. Screaming, crying. Then, intentional throwing of apple juice. Twice. Apparently we didn’t have the right color straws to suit his mood. What the heck. I so should have predicted this! He NEEDED purple AND black. I should have known! I clearly wasn’t thinking thru this well enough. After this, he zoned out for a long time. Then he came around sheepishly and was sorry. He said that he is so sorry for throwing the apple  juice on the floor two times. He then suggested that we should get some more straws the next time we go to the store. Wow. That’s progress. If we could just work on the meltdowns now.

The diet has been going well for us. To be selfish, I have to say that I feel great! No gluten, dairy for over a week. Don’t crave it either. It’s getting a little easier. The bread substitutes leave a lot to be desired. I found tapioca flour hot dog buns. Made them for J and he (Mr. Silver Palette himself) didn’t even know the difference. O liked them, too. There are some brands that are good, and some that are disgusting. After making homemade gfcf pizza last night, I’d like to venture into the bread baking. It was actually pretty good. I’m going to borrow a bread machine and see how it goes.

One issue that has gotten worse has been the biting, oral sensory issue. We’re on the waiting list at Rosemary White for Sensory Integration Therapy. O constantly has something in his mouth. Must be chewing at all times. Last night he was chewing so hard he actually bit his inner lip and he didn’t notice it. He has started to bite his fingernails and will chew on the skin on his hands until they are raw if he doesn’t have anything to chew on. He chews on his shirt, sleeves of his coat, his blanket, his stuffed dog, ‘Puff’. He did this when he was younger, but hasn’t been doing this for awhile. These sensory issues seem to come in waves. It is worrisome. Something must be off kilter with him sensory-wise. I could tell that he wanted to hug me this morning when he woke up, but instead he punched me. Then he shoved E over. It didn’t even phase him that he did something wrong. Just kept on walking down the stairs. He scares me when he gets like this. It seems that there is not much that we can do at that moment to help him or help the situation other than removing ourselves from the situation. E was crying saying that O hit him. I gave him attention and he felt better. I was really happy that he didn’t smack him back.

I’ve been thinking about how E’s life is going to be different because of O. I know that in the long run, he will be significantly enriched by having O as his older brother, but I am anticipating some hurdles. I see him overcompensate for O already and he’s not even two. One of my weaknesses is my anxiety involving time. Must be on time. I freak out if I’m late. O is always forcing me to be late and it makes me crazy/crazier. He either can’t focus at all or is entirely over-focused. There is very little middle ground. Trying to get socks, shoes, and a coat on him and get him into the car is a major feat. E goes and gets his own socks and shoes and coat, then he gets O his shoes and coat, too. I can see how he wants to help O and it is really sweet. They’ll be two years apart in school and I wonder how that will play out for each of them. I don’t worry as much about J because he’s so much older than O and E and he’s establishing himself well in his own groove. We’ll deal the issues as they present themselves or blow up in our faces. Either way 😉

I’d like to present my mom with the award for ‘The First One to Find Gluten-free Casein-Free Donuts’ Award. Woo Hoo! As a prize you get to have a GFCF donut with us tomorrow! Can’t wait.

give my son a donut

My God. Are there no GFCF donuts in all of Seattle? On Grocery? No………….. Boy, this mommy searched and searched yesterday but found nothing. My son wanted a donut. My dear, sweet, spacing out, completely adorable autistic son, Oliver who is 4 1/2, wanted a donut. I could not produce it for him. We went to several gluten free bakeries, PCC, Whole Foods, searched the internet, called local donut bakeries. I found some truly gross looking recipes. When Oliver gets a bee in his bonnet, watch out world, there is no letting up. He talked about it again and again and again. Woke up this morning asking for donuts. I made GFCF pancakes in the shape of donuts. I stacked them with pure maple syrup and dairy free chocolate chips. He did seem delighted with them. No doubt though, when I pick him up today from school he’ll be asking for the donuts again.

I am not a baker, but it looks like I may have to become one. If it means that it’ll bring a smile to my sweet Oliver’s face, then I might have to dive in.

flying (GFCF) fruit loops

The title says it all. My kids, when not gastronomically appeased, like to throw their food, forks, spoons, and plates at me. Why? This is a good question. O does it because he is O. E does it because O does it and it gets a rise out of me. Thank GOD that J and Peter don’t do it. That would be a problem! Seriously, after putting some energy and thought into this whole GFCF diet, preparing meals has been a challenge.  A rewarding one when they are being consumed, gratefully or not. But, when they are being hurled at me, I take offense.

I have pride in the fact that Julian is such a good eater. He eats a variety of well cultured, very diversified cuisines. He’s picky, but not in a bad way. He has good tastes in food and when he asks me to make him something above and beyond to appease his palette, I will gladly comply. Kinda makes me happy that he’s been paying attention all of these years to the extra effort to provide him a variety of foods and flavors. When I make a pretty well thought out, balanced meal for O that is wholly GFCF AND delicious looking and tasting, and he chucks it at me across the kitchen without even trying it first, followed by his fork, I’m not only sad, but, I’m worried. He demands a hot dog. Seriously?! I’ve made this lovely meal for you and you throw it at me, tell me that you hate me, hurl your fork at me and then demand the most disgusting food on the planet?!! This mom couldn’t say yes to that. Should I have? I have an issue about being a short order cook to my offspring. That is the lowest of the low in my world. Do I do it still? Yes, I do. Am I proud? No, it’s sad. Until our lovely O came into our family, I knew not of how some people are just born like this. I swear that I thought that given a lump of clay, I could form that very lump into whom I wanted. Woah, was I ever wrong. Never been more wrong. I’ve found and am finding each and every day that that was the stupidest assumption that I have ever made. But, tonight, I didn’t give into the hotdog craving of my dearest O. I’ve gotta be consistent. No short order cook here. Sorry, dudes.

O is who he is. J is who he is. E is who he is. I accept that I have some control in guiding them, hopefully showing them some manners. Hopefully they won’t throw plates of food at people that they love the rest of their lives. It’s my hope and prayer that they don’t.

day one of GFCF

Well, only two hours left of the first day of GFCF (gluten-free/casein(milk)-free) for us. I’d say that we did pretty well for our first day. We’ll definitely find our way in this. It’ll take some getting used to and we’ll endure some snags. This morning, I feel like I was ready for a gfcf breakfast smorgasbord. For those who aren’t related to me, you won’t know my obsession with smorgasbords. It’s not an obsession, rather a repulsion. All of that food laying out there. Half of it will go to waste because the Health Dept won’t let it sit out again so it’ll be thrown away. Wasteful. Mottainai. One of my favorite Japanese words that translates to English accd’g to Wikipedia as this: ‘a sense of regret concerning waste when the intrinsic value of an object or resource is not properly utilized’. Love that word. No better way to describe serious utter wastefulness.

So…I set out to meet every dietary need of every family member this morning, the GFCF way. I had GFCF pancakes, waffles, pancake and waffle mixes, bread with soy butter (you can start gagging now), a handful of cereals and granolas, soy yogurts (more gagging), juices, rice milk, almond milk. J has a cold and food is the last thing on his mind so he forgoes the yummy display of food. O ate the pancakes (Trader Joe’s GFCF version), with pure, organic maple syrup. E had the same. What I didn’t anticipate, but apparently should have, is the fact that the chocolate chips that Oliver sometimes gets on his pancakes (thanks, Grandma!!!) have milk in them hence the whole ‘milk chocolate chips’. So, after a bit of whining, I caved and decided that it wasn’t going to be the biggest thing if on the first day that’s the only flub up that we have.

Packed up the little guys lunches and made an executive decision to allow the other family members to eat whatever the want outside the house, but GFCF during the waking hours of O. Seems fair. So, I reached into the back of the deli box in the fridge and grabbed a string cheese for E’s lunch. Don’t tell O!

I communicated with one of his pre-k’s that this is our current route. They were more than receptive to this and very welcome to helping us with the change. I fully expect to provide all of his snacks, but they provided me with the Dept of Health licensing standard that requires that two food groups need be presented in a proper snack. Hence, a grain and a dairy. A protein and a fruit..etc, etc. And they also gave me their month long snack schedule so I can plan around that. Very helpful! I have to fill out some paper work so that they have it on hand for their licensing. I will also need to add this to his IEP for the Seattle School District. All very doable. Very, very fortunate to have such compassionate people on board with us. Apparently, there was only one slip up at lunch where O was offered rice milk and didn’t like it. (I’m sure that was the polite way of describing what he really said which usually involve the words ‘hate’, ‘gross’, ‘disgusting’) I guess that he poured himself a half a glass of real milk.  No big deal. Again, it was our first day.

In the past two days, I have combed Trader Joe’s, Costco, Safeway, and Whole Foods for their gluten free/casein free foods. I think that we could feed a small GFCF army.

I would like to ask the kind soul who invented rice cakes, ‘WHAT THE HELL WERE YOU THINKING?!!!’ That stuff is so disgusting. Makes me feel like I’m on weight watchers. God forbid. I’m NOT eating that and neither are my kids! I’d rather eat air.

O had a great attitude today. He did fantastic at school. Did super well at home. One of the teachers in one of the other classrooms offered him a graham cracker. I think that she must of felt like I was attacking her as I was yelling, ‘NO, NO WHEAT!!!’. I’m crazy. I guess that I’m committed to being crazy for at least the next 6 1/2 weeks.

Yep. Started off Lent praying for all of this to happen for us this morning at mass. I know that this is a good thing. As long as we don’t have to eat rice cakes!