Wheaties Will not Turn Emma Into a Gymnastics Star, but Perhaps a Prize-Winning Boxer. And I Don’t Mean the Dog.

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Too much time has passed to adequately fill you in on the last year+ of life with Emma. There has been change, and much has stayed the same too. We still have: -Challenges, -Ups and Downs, -Good Days, -Bad Days, -Times we Laugh, -Times we Cry, -Late Nights, -Tired Eyes, -Broke Backs, -Happy Hearts, -Screaming Tirades, -Loving Hugs, and Autism.

I’ve been wondering exactly how to ease the upcoming subject into my post without alerting any autism-ma’s and pa’s about the material. Why? Because a year ago, I would have started reading one of my favorite blogs, and gotten to a certain point where the dreaded initials are typed, and started to fade out. “Crap,” I might have thought, “there goes the neighborhood!” I would have likely been annoyed at losing a blog that I thought was maybe going to remain sane, down-to-earth, and not jump on the Autism Bandwagon that I detest so much.

The subject? The material? The DREADED initials?

GFCF.

(Phew. Okay. I said it. Are you still here? Still reading? I hope so ~ Because it’s become a part of our lives, and I’d like to tell you my little story about it.)

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Emma has ongoing digestive issues, like many children with autism. She also had many stomach aches. We went in to see a GI specialist about a year ago, and he took an x-ray. He said she was so full of poop, and impacted/etc, that it was causing her ‘leaking’ and tummy aches. He told us to do this GI cleanse, and then put her on a daily dose of Miralax.

“What the hell else?” I thought to myself during and after the appointment. I tend to be pretty honest and straightforward. I told the GI guy that I just didn’t see myself being able to implement this for at least several weeks, but that I’d give it a shot when I could. He thought that was incredibly rude of me, but I didn’t care. School, Driving, Autism, Not potty trained at the time, and all the other stuff going on led to constant overwhelm and an inability for me to take on anything new, especially a committed regime like daily Miralax. Let alone the cleanse he recommended. So, time went on… And in the end, Emma was ‘going’ every day. I felt that things were probably moving along just fine, as she didn’t seem constipated any more. We solved potty training (mostly, more about that another day). Whatever.

Stomach aches ensued, we ended up going back to him in February of this year. He did an x-ray. Showed her “backed up like a freight train,” (his words, not mine) and he then got very irritated with me for not having taken his advice. He said that he would not see Emma again unless we did the GI cleanse. >SIGH<

So. GI Cleanse. It involved putting my daughter on 48 hours of clear liquids only, and on something like 8+ cap-fulls of Miralax. Oh, By the way, did I mention that her behavior had gone completely out of control? She had become increasingly violent, angry, aggressive, you name it. She was screaming horrible things at us that we had no idea where she got in her head, like, “I’m going to BURN YOU!!!!!!” and “I want you to go get SHOT!!!!” and etc. She was attacking us physically, and …life was hard. So. I anticipated 48 hours of physical abuse. I went and spent over $200 I didn’t have at WalMart buying games, toys, new playdough, etc. I figured I’d better be ready to take on anything and keep her very, very happy.

We started the cleanse. The cleanse went on. She ate about a million popsicles, and I got her every kind of soda and juice imaginable. She only asked for food 3 times.

(Do you want me to repeat that?!?!?!)

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She never broke down. In fact, she was nicer and better than she had been for a long time. There was no violence, minimal tantrums, no heavy meltdowns with head banging. I didn’t get kicked or hit. I only opened 2 of the toys I bought.

And I wondered first, Who replaced my child with this new and improved unit? Was there a recall I missed? And I wondered second, What in the world is my daughter eating that would cause such a sudden change?

That’s when I knew we’d better go ahead and give the GFCF diet a try. It wasn’t sugar or food dye affecting her, that’s pretty much all she’d been consuming for 48 hours straight. My husby and I decided we’d test one full month and check in with everyone at school and home about if it was worth continuing.

– – – – – – – – – – – – –

Now. My daughter was in no way cured of autism. At all. She is still and does still have a developmental delay, a diagnosis of autism. However, she stopped being so violent and angry. The irate meltdowns disappeared, and the regular meltdowns seemed to lessen. That is what we saw at home. Less screaming, no hitting and kicking.

School? Emma’s para summed it up by saying, “If it was my daughter, and I firsthand saw these results – I wouldn’t hesitate for a second to keep her on the diet.” So, despite the cost and added workload on the mother (me), we kept her on the diet.

I’ll be honest, in most ways it sucks. It’s more expensive, it takes way more time to come up with lunches and breakfasts to send to school that she will eat, and it’s just …more work. My son is not a fan of most of my GFCF treats, but hey, I guess that means he won’t eat them all, eh?

The strangest parts: Emma has lost a little weight (a good thing. She was not obese, but a bit overweight, which is a huge concern to doctor’s these days. I was tired of fielding the questions about her restricted eating patterns and what I’ve done to try to overcome them). She is eating a wider variety of food then before, definitely. Also, she is eating way less food. (She’d have these crazy hungry days where all she would want to do all day was eat – It was all I could do to keep the eating to some sort of minimum. Other days she could eat more than my teenaged son.)

Most strangely, she has totally and completely accepted her diet. My 5 year old daughter that hates change and only wants her way? She says, “Okay mommy, I can’t have that. It has (wheat/dairy).” We call it her Allergy Diet. She’s only broken down about not having a grilled cheese sandwich ONCE in the last 9+ weeks.

(Is this post long enough yet???? ha! I’m making up for lost time, folks. Hang in there.)

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Two days ago Bob and I decided that we needed to test this diet out a little bit, and see what some wheat would do. I let her have a hot dog with the bun. Then, I let her have two slices of bread, and then three pretzel crackers. She had been normal all day. About 45-60 minutes later she turned into the bride of satan. Bob kept looking for pea soup, and I literally sat in the front seat of the car plugging my ears and trying to smile to hide my ear-pain. She went ballistic; she screamed for hours, she repeatedly kicked us in the car while in her carseat, she banged her head back over and over again, and nothing was right. She sobbed and sobbed over nothing relevant. It went on and on… 4 hours later? A little bit better, but not much. The next day? A little iffy sometimes, but better than the previous evening. Today? Fine. Although she has asked for more bread about 10 times, which is more than the last 9 weeks. Hmpf.

-Gads-

No more wheat. Please, dear people, no more wheat.

Why did we do this? Because I feel it’s important to not blindly trust something, especially if it’s not easier and cheaper. I want proof. I also wanted to try to see if it’s both wheat and dairy, or just one that is more of a problem than the other. Obviously we figured a little something out this weekend. I am making her lunches and breakfasts with a renewed vigor. Also? I have a secret weapon I can use to get out of family functions… (Ha ha ha ha! Please know I’m joking!!!)

Stay tuned though, because next weekend we’re going to give dairy a try.

 – – – – – – – – – – – –

PS: I did one of my big research papers in my abnormal child psychology class on the subject of the efficacy of the GFCF Diet in treating children with Autism. The reports are that it is inconclusive; there is no proof of it curing or changing a child’s autism in any way. So. I used that to back up my stance that I was not going to put Emma on the diet. The results are still inconclusive, and so I don’t mean to tell anyone what to do. I can however say that our experience has been somewhat drastic and specific. The end. For now. xoxoxo

Photo on 2-10-13 at 12.34 PM #3

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What can I say?

I’ve been ignoring this blog, but it hasn’t felt good. There are so many times that I want to share the latest challenge or victory, and I feel like I just don’t have the time to give the posting what it deserves. So I don’t do anything.

Isn’t that just a gauzy-flakout?

I know, you all can see right through it…

I need to write anyway, because it helps me to process and it also helps others to understand. Instead of spending so much time surfing Facebook about the latest atrocity or victory, maybe I could dial it in a little more close to home.

Thanks for being here, everyone. I graduate with my BA in three weeks; I hope that part of my pre-graduate school life can include sharing in here and reading more of my favorites listed in my blogroll as well.

love*love*love

small circles

One thing I’ve recently absorbed, is that nearly everything really does change. With the exception of lack of sleep (which is a big deal), many of Emma’s challenges have morphed. Even slight change leads to new feelings of elation and at times desperation. But hey – at least its a new desperation.

It’s forcing me to come to new alignments with parenting, patience, positivity and hope. I mean – to really internally register that “XYZ” won’t be  in its exact same form forever is liberating. I know that there are certain actions that we, as parents of a child with autism, may have to deal with on a long-term basis. But I’m focusing on all of those other things…

I think the trick to “the allowing” is to do your best to SHHHHHH- fear responses. I’ve found that I try to protect myself from further disappointment by fearing the worst. That “XYZ” will NEVER change, that it will get worse, that it will be bigger and heavier and stronger than ever. This same protective fear doesn’t allow me to appreciate when things lighten in a certain area. I sometimes don’t even see my little reprieves, because I’m fearful of it changing back – or turning into something WORSE.

Here’s a funny example: Emma went from wearing only dresses and sometimes pants, to suddenly only wearing stretchpants (leggings). This has become very problematic. After about 6 months of this, I went ahead and got rid of a bunch of new jeans I’d gotten her. Why wait? Several weeks later, she suddenly wanted to wear JEANS. Of course, right?!?! I found myself just fearing that she’d go to ONLY wearing jeans, and not any of the 900 new pairs of leggings we’d gotten her. I saw $$$, I saw fits, I saw my daughter refusing to wear another pretty dress.

But this new little voice speaking let me know that it’s all right – – It’s okay to enjoy progress. It’s okay to celebrate her victories. It’s okay to take a big, HUGE  >>sigh<< of relief that a behavior might be going away, however momentary.  There are always new challenges. But I’m discovering that preparing myself for future challenges by NOT enjoying current victories is really short-changing and ineffective.

NOT that any of you ever do that, with your autistic child, typical child, or any other part of your life. Heh-heh!

Anyway. Enough introspection. Whatsup here????? Well, I’ve been very bad at posting, obviously. For those that don’t know, I’m working towards my bachelors degree at a local state college. This last semester I had to take 6 classes at once, four of them studio classes. Translation = CRAZYTOWN. I’ve also been working hard with some very impressive and dedicated women in Oregon on our new non-profit, The “A” Team Justice League, AKA “The A Team” (You can find this group on Facebook). Lots of details we are still working out, etc. I’d love for you all to check out and befriend our website at www.theateamtoday.org. I’ve also edited and produced our second publication of LoveABLE News. ‘Folks with autism in your lives (and those that don’t!) PLEASE check out this newsletter. It has so many hysterical articles, and some wonderful perspectives, reviews, etc. You don’t have to live in Oregon to enjoy and participate; I live in Colorado!

I was working a bit on the website, and decided to throw all of my blogroll on there. They’re all great, wonderful, articulate people dealing with autism in their own or kid’s lives. It suddenly made me SO homesick! I miss reading everyone’s words, and lives, and used to feel like I knew what was going on with the peeps. But it’s okay. I’ll be a loyal reader/commenter again, hopefully soon.

Emma is just growing like mint. 🙂 She’s cute, cuddly, and as non-negotiable as ever! She’s really making some great progress. She can write her name sometimes, and has started drawing some figures. She also made up her first song last week, it goes:

“Momma likes peanut butter, Emma doesn’t.” (refrain)

So cute. Two days ago she started switching Momma and Emma around, for humor effect, I was really impressed and have to tickle the stuffing out of her when she does it.

Her anxiety and OCD issues have increased drastically, but hey, that’s for another post. We’re sticking to the positive right now. Right???? Lots of love to my loyal readers. Love you all!

Because It’s True

I’m laid up. I had foot surgery last week. Everything went well, I’m in no pain, but I can only spend 15 minutes of every hour with my foot NOT elevated. And that 15 minutes includes no contact with the floor. It’s not easy to get around!

This whole time could have been an absolute nightmare, and it hasn’t been. My dear mother, who is ready at the drop of a hat to help her children whenever possible, came down to take me to the surgery and help with the ensuing chaos.

And believe me. My house is chaos. Between me being grumpy, Emma’s insistent nature and house-destroying abilities, and my incredibly messy house… I think we about did her in. 🙂 But she was here, with grace and [usually] patience, to ask me if I needed a drink or a kleenex, or a pill, or anything my heart desired.

If only everyone was so lucky!