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.

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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.

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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

Summertime and Dinnertime

Hmmmmm…..

I’ve spent the last two weeks transporting Em and myself [and my momma, that was kind and valiant enough to join us!] to and from Denver for her intensive feeding clinic. It had its ups and downs – but I tell you – she ate! If any of you out there have a child with restricted diets and eating issues, and would be interested in learning some of what we did, please let me know. I’d be happy to share! 

We also got to take her to the Zoo.  She enjoyed the animals for the first 30 seconds, and was then in total and complete awe of the strollers, babies, and curbs/sitting benches to climb and jump off of. 🙂 I took lots of pictures though, because she did SEE the animals, and might be really happy to look back and talk about it later. She has a really great memory, so we’ll see.

I’ve been cleaning my house and trying to get some semblance of normalcy before my foot surgery in < two weeks. Emma has been having a BLAST lately, in absolute heaven. We go outside, she plays in the mud and the kiddie pool. She helps water the flowers and plant new ones. She changes her clothes every 5 minutes. She runs outside to pee in the grass. {Yeah, I know, not the greatest thing} There are underwear and pull-ups all over the house and property right now.  Ha ha ha ha! 

She’s continuing to broaden her vocabulary and language ability, which is wonderful, mostly. It’s when we’re having dinner [or whatever] and she starts screaming at us to “STOP TALKING, BE QUIET!!!” over and over, until we eventually DO shut up that I wonder.  😀

Her play and imagination skills are also vastly improving. No, they still aren’t anywhere close to ‘normal’ or typical… but they do exist, and are rapidly increasing. What more could I ask for? [besides a mute button]

Sunshine is here. We’re all pretty happy…

On a last and final note, food for thought… would you give up your child’s disability? The chance for the same ‘chances’ as any other child? For reaching expectations? For more peace and security????  BUT, would you be willing to give up the incredible uniqueness of your child? The poignant lessons they bring to others? The fact that your child is never forgotten, never leaving a person untouched and unchanged? What would you ‘lose’ if you lost the ISSUE? 

I dont know, I don’t have any answers. I just found myself in a very very strange and confusing place [emotionally] when trying to consider this question.  I couldn’t say one way or the other. Isn’t that WEIRD?????

Any other parents out there that have a non-typical child, how do you feel about this?

Big Changes

I can’t say that the road has been easy ladies and gentlemen, but I can say that SCHOOL IS OUT!!!!  This semester has been just a little too full for both Emma’s and my liking. She will miss her school and daycare, but it will sure be great to spend time at home together.

We took Emma to the dentist about 4 weeks ago [her first trip]. The dentist couldn’t get good xrays, and couldnt get a great look in her mouth, but found a ton of cavities. Of course, it’s all our fault. But we’ve been doing the best that we can with what we have and it will just have to do. Emma, who for the first 3 years of her life has refused to let me do more than just barely skim the front of her teeth with the brush, let the assistant do a full brushing on her mouth. I couldn’t believe it! I was just like, “Turn me into a big fat liar, why don’t you!” 

HERE IS SOME GOOD INFORMATION that would have been nice to know years ago. She told me that children with certain issues usually don’t like having their teeth brushed. She said to try laying her down on her bed, the floor, or in a recliner, with a cozy pillow and blanket. Then brush, and make sure that I use my finger to hold the corners of the mouth out so that the brush doesn’t pinch the edges when moving in/out.  Well, it hasn’t been perfect, but I have been getting much much much better results. My theory is that sitting or standing and having all this mouth stuff going on might make them feel like they are off balance or something [?] and perhaps laying down and being cozy helps with sensory issues too…

Who knows. Anyway, we are set up in July with surgery at The Childrens Hospital, where they will put her out and see what all they need to do. Maybe she’ll end up with a mouth of pretty, sparkly, silver “princess teeth”. 🙂  [everything sparkly is ‘princess’ around here].

The other good news x2.

One, Emma is starting to potty train. When at school, she uses their little toilet all the time. She went in underwear on her last day and didn’t have a single accident. The next day she went to my sister’s house to play, and didn’t have any accidents either. Yesterday [at home] there were two accidents, but honestly, it was totally my fault.  ACK.  I am not used to having to check in with her about having to go!  I totally forgot, and I guess she did too.

TWO. We have had two nights with no chocolate milk. No strawberry milk. No juice, milk, just a sippy cup full of water.  The first night sucked although not as much as it could have. She woke up at 1am and wanted her chocolate milk, and it took an hour+ for her to get back to sleep. Last night, she was a little upset at bedtime, but didn’t wake me up about it once. Yes! I know that I’m not really over the hurdle yet, but I’m feeling heartened and hopeful.

After Emma’s dentist appointment we went to visit one of my DH’s dear friends.  Emma and I took a walk outside, and she got to see her first worm. OH MY GOODNESS, it was the coolest thing she had ever laid eyes or hands on!!!  It was so cute and sooo funny how she acted with it.

We’ve got this next week to get the house clean and the laundry done, and then were off to The Childrens Hospital for her 2 week feeding clinic. I’m excited to see what kind of results we get. Anyway, I’d love to post more, but hopefully you will understand that after the end of the term I’m just all-writed-out.  ❤

…no rest for the wicked

I kind of feel like I got hit by a truck and I’ve been laying by the side of the road for a few weeks.

While I was in the ditch, a few good events passed me by…  Finals for semester three came and went, leaving me with a 4.0 GPA.  My hard work and dedication will hopefully pay off, literally, when I appy for some scholarships next semester.

We were able to get in with the developmental specialists at Children’s Hospital on Jan. 5th.  With the short notice and our schedule demands, this was very unexpected.  We meet with the metabolic specialist on the 4th, and will hopefully get some more definite results on what is going on with Emma’s mitochondria/etc.  Having the developmental appointment the day after is great; if we have new information from the metabolic clinic, we can put it to good use.

Also, it appears that even though the pricipal so rudely told me that they “absolutely will NOT” pay for out of district placement for Emma in a preschool, they WILL.  Ha ha ha.  It’s called STATE LAW, and I’m so glad that we aren’t going to have to hire an attorney.  Emma starts preschool the week of January 10th… Let’s keep our fingers crossed for a happy transition!

On a not-so great note, last Friday Emma came down with a horrible flu.  She has spent the last 4 days/nights feverish, no food, little drink.  Sunday we ended up taking her to the ER due to a very sudden and aggressive cough with labored breathing.  The verdict was croup, to our dismay.  She hasn’t been sleeping hardly at all, and last night she had a HORRIBLE night-terror attack.  It took us hours to get her to snap out of it.

You know what’s weird?  It doesn’t matter what is going on – Emma is never lethargic.  In fact, she is nothing but uber-energetic all the time.  Here she is, not having eaten in four days, dehydrated, sick as a dog, and literally bouncing off the walls of the doctor’s office today.  Do you get it?  I DONT.  Now, please keep in mind friends, that I didn’t say she was happy all the time.  That hyperactivity can definitely be put to some very frustrating and ear-splitting use, my sweet little girl…   she’s such a handfull.  Her latest trick this weekend is telling me, “STOP IT, MOMMA!!!”  >>sigh<<

Have any of you readers out there dealt with this non-stop hyperactivity levels?  It’s not that she can’t sit on my lap and read a book with me, she can.  Sometimes.  If she really really wants to.  But I mean, she NEVER stops…   ??????????????????????

So – needless to say – momma hasn’t been sleeping at all either.  It’s finally caught up with me, as I am starting to have a sore throat and feel achy too.  Ugh!  Finals week running straight into sick toddler is no fun at all.  Now I’m worried that our plans for Christmas with my family might be cancelled…  keep a few fingers crossed for us.  🙂

The Saddest Violin in the Orchestra

I have to know, for those that have been dealing with a special needs child longer than me, does the grief ever go away? Or does it follow in some form or another as life’s milestones continue to pass by differently than you expected [before diagnosis]?

This week has been excruciating. I have no idea why, but Emma’s behavior has suddenly spiraled down into the pits of despair.  The last four days have been filled with anger and tears beyond belief.  She’s having these horrible meltdowns that turn into absolute insanity as she hits herself, slaps her face, pulls her hair, and bangs her head while screaming like she’s on fire.  They last for a looooong time, and happen multiple times a day.  That makes the horrible angry screaming fits seem like good behavior, and the times like now [happily watching sesame street as she plays with a straw] seem positively ANGELIC.

The last 20 minutes of the ride home today were filled with that.  She wanted the Elmo movie on.  I HAD it on.  She melted down, and under the screams I just had to listen to the sound of her slapping herself in the face and banging her head back on the car seat.  ???  I tell you what, it’s torture.  The last month has been mother abuse, but she’s only 2, and I wouldn’t press charges anyway.  But damn. I’m reaching a point where I feel like I’m stuck living in a nightmare.

The doctor on Monday said she probably has vocal cord damage [scar tissue?  Polyps or something] from screaming and yelling/crying so much, so loud, for so long.  Talk about breaking my heart. While we were there, we heard other kids throwing horrible fits in the other examination rooms; they sounded just like Emma.  Except, they were 8 or 9 or 10 years old.  It was overly sobering.  I try to be positive and think that things will improve for us – maybe these things are all just a phase.  But to be completely honest, the future is so vastly unknown that it’s absolutely terrifying.

The doctor also told us to try melatonin before bedtime.  I guess that it has extraordinarily positive effects on children with an ASD.  We bought some on our way home from Denver.  I was SOOOO excited to try it!  Last night was her first night, and it didn’t work.  She still woke up twice. I know that may not seem like a big deal – but I was disappointed anyway. I’m very ready to begin sleeping through the night.

Today Emma even threw her fits during therapy, which has never happened before.  She loves J & J so much that sessions are usually great, despite how bad of a day she’s having.

I’m also broke, heading into finals week, and had my last painting class today – none of which help with my feelings of discouragement.