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

2012-12-22 15.52.55

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.)

2011-12-24 19.13.18

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?!?!?!)

2013-01-29 18.12.46

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.)

– – – – – – – – – – – –

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

LoveABLE News, and really loveable kids…

THERE. I did it. I edited, created, worked over and otherwise single-handedly brought the A-Teams newsletter to life. There are some great women in the group that came up with a number of the to-be-regular columns. I really enjoy how each person’s character comes through in the writing, it really was a joy to work on. It was also challenging; I have never worked with Adobe InDesign, and also felt hindered by the CS edition limitations. Regardless, it’s a beautiful thing, and it moves me closer to my personal goals of transformation.

The newsletter is at: www.dalethmccoy.com/loveable_news .  I hope you will take the time to read through the articles, and I also hope you will ignore my ridiculous error in my “letter from the editor”.  Isn’t it amazing what missing one little word can do?

And on to my extremely loveable kids. R took his “alive at 25″ class, and now we just need to get him in to take the test for his driver’s permit. I find that tremendously exciting. Terrifying, yes, he has some real challenges. But how could I possibly let his enthusiasm go unappreciated? I think that we will have fun with this.  He wants to join the Cross Country running team this fall. I’m impressed, it’s the first time he’s shown interest in any school sport. I’m hoping that he really explores and benefits from it.

He’s 5’10”, a full 2 inches taller than me. Taller than his biological father, and it makes me wonder just how tall he is going to get! His step-dad’s genes must be rubbing off on him a little bit. 

And Emma, little [huge-47lbs] Emma.  She’s really taken off this summer. Her teachers and therapists will be so impressed when she starts working with them again. Her language ability has jumped tremendously. She is a little more interactive verbally than she was in the spring. Her mega-meltdowns have decreased a bit, and she is becoming a little better able to express what she wants/needs/etc. before escalating to tantrum. How wonderful!

But as natural as the human condition is, you can’t expect it all to be good. The potty training is getting downright depressing. I thought that it was going well, but it ends up that there are times where she just doesn’t care. She’ll pee on me, the couch, floor, bed, bean-bag, whatever. She just doesn’t notice or care. She has also been developing a strange dislike for using the toilet (big or small) and will hold it in. I have to force/bribe her to go to the bathroom (and that’s on a good day). Other days, it’s just one accident after another.  Needless to say, we are using pull-ups more regularly now than 3 months ago. Maybe when she goes back to school she’ll get into a better mindset about it.

One thing that drives me crazy about myself, is this “ROAMING STATUS” that I seem to have set up for myself. It’s a never-ending mental status search to figure out exactly how high-low functioning she really is. Emma is such a little anomaly. And I know that this quest is meaningless, but I just can’t seem to stop.  She does many things that “Low” (termed by their parents) functioning children do not do. And yet, there are things that “High” (termed by their parents) functioning children do that she has no interest in.

It’s just me. I just want to KNOW. I want to be able to gauge her capacity, like I am my thyroid. It’s at 3.9, therefore, ingest 75 mcg. every morning.  You know what to expect. I hate getting my hopes up about how normal/typical she might be becoming, only to have her turn around and be a complete-total-pissing-weirdo. (said with love, folks) And yet, I will not sell her short – she might have amazing capabilities that we just haven’t tapped into yet. I WANT to give her the chance to be typical in every way she can/wants to be.

All I can do is love her, and try to tune out my Roaming Status as much as possible. It’s expensive, and wastes brain-power. 😉

Anyway, back to the mundane. I’m cleaning my house, getting ready for my in-laws to come visit with us and then take care of the kids while DH and I take our belated honeymoon in Monterey, California. OH, yes, and it’s also for my super-amazing art seminar I am going to, “Weekend With the Masters”. School starts in 5 days. And I would love to just sit here and write……….

 

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.  ❤