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what to google? September 28, 2010

Posted by caizooka in autism, autism parenting.
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So, I’m having a devil of a time with E (2 1/2) who picks up every bad (and good!) thing that O or J says and does. I’ve slacked off a lot more than I would like with O because I try and give him space to get himself out of situations on his own and with assistance and try not to focus on the peripheral. When he loses control, he really doesn’t know what he is doing. In those times, he uses words like, ‘shut up’ ‘stupid’. Great. He normally doesn’t use them in everyday context. Only when he can’t handle himself. Quite frankly, I’m doing what I said that I would never do…different rules for different kids! Yep, I’ve become a massive hypocrite!

E (aka Mr. SmartPants) picks up absolutely everything that O and his 13 year old brother, J say. And, because his wheels are churning at such a rate and in such the right direction for him, he uses everything in perfect context, perfect tone, and looks us right in the eye when uttering these words. Yep, told me, while looking me in the eye and squinted at me with the devil in his eye, ‘shut your face, Mom!’. Seriously, that was such a shocker. The first time. Now it’s become our new normal. Just lowering the bar, day by day, by day.

Oh, yes, we have tried the ignoring phase. Tried the ‘oh, lets use nicer words, pal’ phase. Tried the time out. Been thru my entire, well versed parenting repertoire and have come to the conclusion that I don’t know squat! Oh, I have recently gone hoarse on a day or two because of the ‘shouting’ phase. That, also, didn’t work. DARNIT!!!!! And, I did the lemon squirt bottle in the mouth phase. Of course, that morphed into the ‘shut your face, Mom!’ followed by an immediate ‘can I have lemon juice in my mouth now? It’s spicy, Mom!’ phase. Delightful! Not to mention the looks of people wondering why I am carrying around a lemon juice bottle with me.

I’ve googled and googled. But, what to google?  ‘discipline toddler who will not listen’ ‘how to discipline toddler of autistic older brother’ ‘how to discipline toddler of autistic brother and teenager brother’ ‘how to discipline toddler of 5 year old autistic OCD brother and teenager who thinks it’s hysterical to get a rise out of his parents by making his brothers say inappropriate things’. Okay…tried all of that…and I must say that I must scoff at the suggestions of what to do for our situation. ‘simply tell your child that you don’t like their words’, ‘ignore this behavior, it’ll go away’, etc, etc…

I’m thinking to get the tabasco out. Bad word = a little squirt O’tabasco. Is that really bad?!!! J said one bad word when he was 3. I washed his mouth out with soap. Never again. Situation over. Done. He also responded well to time out and saying, ‘No thank you!’.

I know that E is going to be extremely successful in whatever he decides to do and set his sight on, but he is sure a tough nugget to raise.

Over the weekend we went to Minneapolis to my sister’s wedding. The wedding was lovely. The city and all of the events of the wedding were marvelous. Yet, E elevated to a whole nuther level of cuckoo. I think that we enter situations carefully anticipating how O is going to do. What we can do to help him get through situations. What do we need? What GF foods do we need to prepare? What kind of situation is it? Who is going to be there? Are we going to have the right coverage for 1:1 attention for him. J had an awesome time because his cousins as well as my sister’s husband’s nephews, and their new cousins had a fantastic time together. E is the one that always catches me off guard. He is the one that I guess that I expect will go with the flow as he is boy #3. In my family, girl #3 was the most pleasant and always came along to everyone else’s events gladly and was always so easy to be around and take places. This is not what I expected. Everyone says that their 3rd child is always so chill and go with the flow. Hmmm….not quite seeing that yet. Maybe soon?

Can I just say that The Mall of America is a nutty place. Loved it and hated it all in the same breath of recirculated, temperature controlled air. Just to paint the picture for ya…we walk in and went immediately to the Nickelodeon Universe. Holy cow! In the middle of the mall is the LOUDEST, funnest, LOUDEST, craziest, LOUDEST place on earth. It was insane. The older kids had the most fab time ever. They got unlimited ride wrist bracelets and were gone, gone, gone…not even breaking for lunch. My sister took them smoothies to get them some nutrients, knowing that they weren’t going to sacrifice the time to sit down for a real meal. Good call! I looked at O thinking that he might be about to wig out, but for some odd reason, he was just bee bopping along, skipping to his own tune, enjoying life. E was in the stroller, screaming and yelling that he wanted to get out. Uggg…this mommy’s brain simply could not filter out all of the sounds. The layers of noise were too darned much. Finally, after a couple of hours of walking around the MoA, Peter took E back to the hotel to get him to sleep. Then I could focus on O. We had a great time after that.

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‘gluten-four’ makes my tummy hurt April 20, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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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! April 20, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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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.

Back to the drawing board April 10, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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On Easter Sunday we started to let Oliver eat gluten again. And some dairy. Not huge quantities of either. It’s been a disaster. We are shocked. He is spending a lot of time spacing out, freaks out over seemingly nothing, has reverted to grunting and pointing rather than using words, is unglued…I could go on. Basically, it seems like we have taken 10 steps backwards. We went to Leavenworth for the week and he had a really difficult time adjusting. He hid under the covers, in small corners when we first got there. Refusing to join in. Wanted to go home to the brown house (that’s what he calls our house). He then realized that I was willing to give in more than usual and he started demanding lollipops. Lots, and lots of lollipops. And he became compulsively obsessive about it, too.  ‘I want a lollipop!’ ‘Lollipop!’ ‘Mommy, lollipop!’ This did not end until I gave him a lollipop. It was almost humorous. Thank goodness my mom, dad, and sister were there to help with their great senses of humor. It made a bad situation not so bad. Such a gift to be able to laugh!

Okay, so what do we do now? The diet was hard, but not being on it was way more difficult. I said just last week that if it were worth it, I’d go back on it in a heartbeat. Well, my heart has beat, skipped beats, and beat again. I wanted to see if it was something else that was causing that behavior, but my instinct is pretty clearly telling me that it’s time to go back. I’m just wondering in which capacity though. We are thinking to trying going no-gluten, but having moderate amounts of casein (dairy). Honestly, all of those soy products as cheese/dairy replacements was really bothering me. I think that we’ll give this a go and see what the outcome is.

day one of GFCF February 17, 2010

Posted by caizooka in autism, autism parenting, gfcf.
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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!

all chirped out January 9, 2010

Posted by caizooka in autism parenting.
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It’s just been one of those days. Kids have been super demanding. O has been really into ‘chirping’ like a bird. A really high pitched sound that has been expressed in a very enthusiastic chirpy way when happy, but also in a very angry chirped-off way, too. Only a mom could tell the difference between the different chirps. This mom is done deciphering the chirps for the day. All chirped out, indeed.

In PEPS we did this great activity in the first few minutes of our meetings of everyone going around the circle and stating their ‘highs and lows’.  It’s a good exercise because it really helped me to focus on the positive, yet acknowledge the negative to grow. Today my mom and I had a great time chuckling over E in his hysterical-ness. He is such a funny guy. He thrives on attention and was soaking up every single ounce of it when he had our undivided attention. So cute!!! One high of the day. O and I made gluten-free cupcakes and frosting, complete with sprinkles, together. It was a fun experience. Another high of the day. (thanks to our friend, S, who gave us a bunch of gluten-free products and the inspiration behind it, too).  J has been so happy this week. Being back around his friends at school is good for him. He has reconnected with a dear friend of his from elementary school and I think that it completes his soul. They are life long friends. That would be one high for each kid.

The lows……….the chirps, the punching in the stomach by O when he didn’t get what he wanted from me. One friend suggested that I work on my abs to buck up for those punches, but the fact is that they come when you just plain don’t expect it. They occur so randomly that there is no way to possibly flex in time to absorb the impact of the punch or the kick or the whop. I’ll work on my abs anyways 😉 E was a screamer today and that didn’t help anything.

Today was just one of those days. We rallied the kids to go the the indoor playpark. They love it there. I think that maybe it was too crowded today or they were too tired. Maybe a little of both. They had fun playing but tired easily and wanted to eat. Mom and I got their lunches out in the lunch room. ALL of the other kids were sitting down, eating their lunches. Not my kids. E would not sit down and insisted upon running around with a sandwich in his one hand and a baggie of chips in the other. You can imagine that the chips were flying everywhere. O actually did pretty well but he was grumpy and very difficult to get out the door. I think that I was just super emotional and was very aware of the looks of  ‘what did you do to make your kids like that?’. I know the look because I used to be the one on the other side of that look with everyone else. So I get it. I understand that it’s not as much judgment as it is a combination of concern, curiosity, and a splash of judgment.

I think that I need to post cheerful, inspirational sayings on the ceiling in various locations in my house and car. When I am doing my counting to 10 to calm down in those special moments of crisis, I am looking up anyways, so atleast I could get a piece of inspiration from above.

I am saying a prayer for less chirping tomorrow and more smiles 😉

From here to there January 5, 2010

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Well, its a new year. I never get caught up in the hubbub of new years resolutions or even of new years for the matter. I love the idea of cleaning and cooking on new years eve to sit, relax, and enjoy new years day with family. I usually try and do some sort of Japanese feast, but this year Peter’s parents were here and we made a grand Egyptian feast. Actually, I was just sous chef to the event. Learned alot though.

The way in which one day O can wake up and be so happy, then turn on a dime is such a huge mystery to me. We went to see Alvin and the Chipmunks The Squeakuel. A high quality movie. We went with my mother in law it was her first outside experience with O ‘flipping out’. He was really unsettled during the movie. Then after the movie he was spacing out. A lot. There was a water fountain at Bellevue Square and he was somewhat mesmerized by it and didn’t want to move from it. Finally, I coerced him to go to the bathroom as he was doing the potty dance. We found a restaurant for lunch and he wouldn’t have it. Almost kicked the table over. The waitress was so cooperative. As soon as the food came, I looked at her and said, ‘I don’t know how long we’re going to last here, so could you please bring the check and some take out plates in case we have to bolt’. Thank goodness she was very helpful and we ended up having to leave early. O was yelling and was physically escalating into a tantrum. I was in a ‘high alert’ parenting mode. I was contemplating which would be the safest route to the car…carrying him up two flights of stairs, and crossing the sky bridge, through the building, up an escalator, over another sky bridge, down an elevator to the car. Or, we could walk across two very busy crosswalks then down the elevator to the car.  I chose the latter because I didn’t have the physical strength to contain him for a long period of time. I was thinking, ‘which is worse, jumping over the sky bridge, or running out in the middle of the intersection’!! We made it to the parking garage. Holding on tight. But then I forgot where I parked the car!!! Went to P5, not there, P4, not there, P3, still not there. Everyone was losing it. Finally found it on P2. Then we got in the car and he would NOT wear his seat belt. I pulled out my book, read a page, and asked him if he was ready then. ‘Okay, I’m ready now’ was his answer. Don’t know what set him off, but I’m beginning to recognize some of the beginning signs of when he might have a tantrum. The covering of the ears is a big one. Even if something isn’t that loud, he covers his ears tightly with his hands. Like he wants to separate himself from the situation. From there he seems to start shouting more than usual. I think that at that point is when we should change venues. I think that my mother in law felt helpless as she watched this whole incident unfold. To understand that someone has autism in theory is very different from watching an autistic tantrum evolve before you and be powerless to it. He started to cover his ears during the movie a lot. I thought that it may have been too loud. That is probably partially true. Another piece to the puzzle.

There has been quite a bit on autism on the news in the past few weeks. It’s hard to decipher what is true and what studies were manipulated to prove a point of view. I’m very suspect about studies. The latest report out is that there is a lack of evidence that special diets work to help in autistic children. What I got out of the article is that there just isn’t enough information to say one way or the other. This is good, because it states that we need more information and more research in this area. Enterocolitis, or leaky gut, as it is called, is this kind of pain that O seems to suffer from. Random, IBS like pain. There are theories on ways to help. But, in researching these theories, I’m constantly looking at the sources of the information. Not very much of it is yet substantiated. I would love to meet someone for whom any of these therapies worked for.

I’ve started to substitute gluten products, like bread, etc, for gluten-free alternatives. Successfully so far!  Today he had gluten-free cereal for breakfast. For lunch, quinoa pasta (it was actually pretty good.  E and I ate it, too!) He even ate some gluten-free bread with his peanut butter and jam sandwich! For dinner gluten free bread, peas, and cheese. Then he saw Daddy eating a delicious macaroni with bechamel sauce that grandma made and he ate some of that.  But, that was the ONLY gluten food that he ate today. That was better than I thought that we’d do today. My goal is to gradually replace all gluten foods with a non-gluten version whenever possible at home.  The challenge is going to be the ‘if I see it, I want it’ way of eating that O (and most kids) have. I am sure that there will be other challenges in this that I haven’t even considered yet. That’s what makes this a challenge.

I don’t want to set a date for the diet, or for anything for that matter because I want to remove the pressure to go all or nothing. I don’t want to feel the sense of urgency to ‘heal’ my son of autism that I am receiving. I think that the last thing that O needs is me being anxious. I have enough anxiety as it is, no extra anxiety please.

What O does need is us to feel confident in our choices. Indeed, there are certain behaviors that we need to work on. The tantrums, the OCD, the eye contact, socialization, etc, etc, the list goes on. It is my belief at this very moment that there is no cure for autism. If there is, I’ll be thrilled, but prove it to me. I continue to look into secretin therapy. I hear so many mixed reviews of it. Some places (websites) state that 85% of the children on the therapy see very positive results. Great! That site states that they actually only take the secretin for 2 weeks, then continue the vitamin therapy. Our doctor researched it a bit and found that the therapy ran $200/month and had to continued indefinitely, and had only found one positive case study. Hmmm…you can tell that I have more to research here.