I originally started this blog a few years ago to chronicle Noah's daily struggles with autism. It was a dark time in my life - a time when I felt that things would never get better. It was a time when I felt that all my hopes and dreams for my son and for our family had died. In my efforts to help Noah recover from autism, I began a journey that inadvertently led me to rediscover myself. I learned how to laugh again. How to dream again. How to live again. How to love again.

Autism Schmaustism. He's still our son.

This is a blog celebrating our family. Our kids. Our life.

Thursday, August 24, 2006

A brief update of Noah

Lots of people have asked how Noah's doing here in TN, so I thought I'd post a brief update. As most of you know, Noah's been doing a lot of squealing and shrieking and stimming these last 5 weeks. It's the exact same behavior that he had when he was on DMPS (a sulfur based chelator that he was on for 10 months when he was 3). And I couldn't quite understand why he has acting that way again. He hasn't been on DMPS for 14 months now. I do think that some of it is due to the high EMF's in our apartment, but he still just doesn't seem quite right. He's started toe-walking again and spinning in circles. And I sometimes think he's going to start flying up in the air with all the hand flapping he's doing now. Anyway, we've been looking a lot into genetics because I think that may hold the missing piece to Noah's autism puzzle. What we're doing out here in TN is great and loads of kids out here are getting better. I'm seeing it with my own eyes. But Noah has always been such a toughnut. And he's improving, but it just seems like we always hit a wall. Anyway, there's a genetics test that has been formulated to find mutations in the methylation pathway - which is an area that a lot of kids with autism have problems with. I really think that Noah has mutations that affect his transulfation pathway. He's always had problems with sulfur and his reaction to the DMPS basically proved it. He's been eating a lot of protein as well - which I think is putting a strain on his kidneys. If my memory serves correct, I think the protein is broken down into ammonia and the body protects itself (b/c ammonia is toxic) by turning it into urea. But Noah has small kidneys according to some scans done at Children's Hospital in Dallas - so we really have to be careful with overloading his kidneys.. .and, of course, the kidneys flush out toxins so naturally they're going to be overloaded with all the gunk Noah stores up. Plus, we've been feeding him high sulfur foods like onions and garlic, etc. Anyway, I know I'm not making a lot of sense here... but we sent off the nutrigenomics test last week and we'll get the results back in about 9 weeks. But I mentioned my theory to Tamara and Dr. Foley and sure enough Noah has a build up of sulfur in his body. We weren't able to test for ammonia, but we suspect that he has high ammonia, too. Sim picked up a Urine Amino Acids test kit today from Dr. Rao and he's going to bring that with him when he comes to visit next month. That test will confirm on paper Noah's ammonia status.
The point is, even though we don't have the actual genetics test back yet - which will do so much in confirming Noah's mutations and basically letting us know what we're truly up against, we can go ahead and start treating Noah for his sulfur and ammonia issues... which means we should start seeing a drastic decrease in his squealing and stimming and finally start to see some of the benefit from all the therapies and supplements that he's been receiving for the last 5 weeks. Yea!!!

Actually, just tonight, I held Noah's index finger and asked him "Eyes?" and he touched my eye. "Ear?" and he touched my eye - so that doesn't count. "Nose" and he touched my nose and "Mouth?" and he touched my mouth. 3 out of 4's not bad! That's the most he's ever gotten.

Seems like such a small thing for an almost 5 year old, but I'm quite proud of it!
:-)

Well, off to put the boys to bed. Well, more like off to put Eli to bed and then yawn for the next 4 hours until Noah finally falls asleep. But I did give him so melatonin tonight, so maybe that'll help. Cross your fingers!

Noah's Mom

Monday, August 21, 2006

We're back in TN

Hey, just wanted to post a quick update...

We arrived back in TN on Saturday. It was the first time that I've driven all the way through. 12 hours - woo hoo! I feel like a pro now. :-)

Eli survived his first day back at daycare. He cried and cried when I had to leave him - which meant that I cried and cried. But he was all smiles by the time I picked him up. He was busy playing with blue playdoh. If he ends up having green poo tonight then I know where it came from!

Noah has done really good since being back. He's sleeping pretty well and right now he's eating white basmati stir fry with... get this... cabbage, broccoli, and carrots. Can you believe it???? I ended up buying the shredded veggies in a pack. I think it's called shredded coleslaw. I've seen an organic kind at Target or Walmart, but just got the regular because I'm tired of spending mucho money on organic things that he doesn't eat. Wouldn't ya know that he's chowing it done. So, now we know the answer.... it's those pesticides that make the food taste so yummy! (Just kidding - hee hee).

He's still shrieking a bit, but I think it's getting a bit better. We started giving him probiotics again, so I think that's helping.

Anyway, just wanted to post an update. Will write more when I can.

Noah's Mom

Wednesday, August 16, 2006

Eli's Surgery

We made it back to Texas a few days ago because Eli had dental surgery scheduled at Children's in Dallas. It was soooooooo good to cross over that Texas line! All of us - the kids and me - were really happy to get back home. Sim and my parents met us at Craig & Stephanie's in Mt. Pleasant and Sim drove back home the rest of the way. Eli honestly did not shut up for the entire 2 1/2 drive. He was such a chatterbox. He was really excited to see Sim. And when we turned on our road, Noah actually started smiling and clapping his hands. Ahhhhhh. It really makes me want to not go back to TN. I don't want to take them back to that dreary apartment. I mean, I will, don't worry - we are totally committed to Noah's treatments, but it is so good to see both boys as happy as they are now that we're back. And me, too!!! I love me some Texas! :-)

Well, Eli had his surgery today. 3 crowns and 5 fillings!! Needless to say, the poor kid feels absolutely miserable. First of all, they gave him the "kiddie margarita" to get him good and loosened up before the sedation. He was quite the happy camper for a little bit. About 1 1/2 hours later, they called us back to recovery and we while were waiting, Dad and I heard something that sounded like a caged wild animal. Yep. It was our Eli. He did NOT wake up from the sedation in a good mood. They said he would go through delirium before he fell into a deep sleep. He was making the most awful noises ever - just really deep and gutteral and primal. And he would get really still and then all of a sudden he'd throw his back and arch his body and start flailing about. He honestly looked possessed. I was certain that his head was going to start spinning around.

Right now, it's been about 10 hours since he came to and he's still really groggy. He's complaining that his mouth hurts and he wants us to kiss all of his teeth to make him feel better. As you can imagine, we've done plenty of "air" kisses today.

Noah seems to be doing a lot better since we returned home. It's good to know that the therapy in TN is working - although it did take us having to return home to see the benefits. I think Noah's just much more comfortable here. I hate to take him back, but I think the final 2 months of therapy will really help him out and then we should see some really good stuff once we return home. His eye contact has been stellar and he's just so darn happy. He is still screeching loads and has been doing so ever since we first set foot in that apartment a month ago. His cranial sacral therapist (CST) says that his nervous system is really charged up. We think there's just so much energy in the apartment and that it's overloaded him. He can't calm down. Tamara has a stetzer meter, so we're going to check out the electricity that's coming through each of the plugs in the apartment when we get back and figure out if we need more stetzer filters. We go back to Dr. Kestner on Friday (she's our CST) and she always does great work with him. If any of you are in need of a good chiropracter, I highly recommend Dr. Kestner - who's on Forest Lane in Dallas. She's awesome!

So much has happened this week. I'll try to write more soon!

Noah's Mom

Tuesday, August 08, 2006

Expect a Miracle

Today, we were at a red light waiting to pull into the post office - and the car in front of us was bright yellow. The owner had taken yellow and white and orange shoe polish and wrote "Expect a Miracle" on the back of it and was just driving it around town. She pulled in next to us and I told her that I really liked her slogan. And she said that she gets a lot of compliments on it and that it's usually from people who really needed that message in their lives.

So, then, I came home and opened my email. I subscribe to Children of Destiny - which is run by parents of a child with autism and they send out dail prayers every weekday that are specific to special needs. Anyway, this was today's message...

Tuesday, August 8, 2006

“Blessed is she who has believed that what the Lord has said to her will be accomplished!”
(Luke 1:45, NIV)

PARENT’S PRAYER:

Dear Heavenly Father,
We thank you for the wonderful promises of abundant life you have given us. Lord, we pray that you would help us to believe for miracles in our lives. Lord, we boldly ask that you would bring _______ to new levels of functioning. We especially ask that you would touch him/her with your miraculous power for (name a few areas your child struggles with such as digestion, communication, OCD, hyperactivity, etc.). We ask that you would redeem those areas that are not fully functioning, and that you would begin a new cycle of healing and advancement. We thank you that you will accomplish great things in his/her life in days and years to come.
In Jesus’ Name,
Amen

Soooooooo.... I'm wondering if God's trying to tell me something. Maybe I need to change my attitude and not get so depressed if Noah's having a bad day or I'm starting to doubt that Noah will ever get better. Everyone has a bad day, right? You just get through it and start another day tomorrow. And don't carry yesterday's worries into today.

I need to be more positive.

I need to expect a miracle.

************************************************************************************
(Okay, on another note, I am completely aware that I'm probably going to sound like a crazy wacko with all my ramblings and stuff. But I'm sure I'm not alone. I know there are other parents out there who go through the same emotions - especially parents of children with autism. It's constantly up and down, up and down. It's a bit embarrassing to wear my heart on my sleeve and then post it on the internet for everyone to read, but bear with me. It'll get better). :-)

Noah's Mom

Monday, August 07, 2006

A Rough Week

It's been a week since I last posted. I know that I promised I wouldn't let so much time go by before updating the blog, but last week was pretty horrible. I'm sorry if you've emailed me privately and I haven't responded yet. I'm just really exhausted and feeling a bit down. I honestly didn't realize how much hard it would be here by myself. Major kudos to all you single mom and dads out there. I don't know how you do it!

Noah's still shrieking like a banshee. I wish I knew what was up with him. He's acting completely different than he has before. I'm pretty positive that he's moving metals out, but I sure hate the behaviors that go along with it. We did find out that the steroids that he's been taking were stuck in his stomach. Noah really just can't detox anything. We even need to do a rotation diet with him because if he has too much of any one thing, it builds up in his body and causes a reaction. That's what happened with the steroids. Noah started getting constipated and was doing a #2 every three days. I suspected that the steroids were stuck somewhere in his body and Dr. Foley found it in his stomach. He cleared it and wouldn't you know that Noah's done 11 - yes 11 - poos in the last three days. And they are sooooooooo gross. I'm surprised that the CDC hasn't been called out to our apartment due to the rank smell that's escaping under the doorway. Ugh.

Tamara's making us go super strict on his diet. It's my fault, really. I just hate the diet so much. And Noah is really aware of what other people are eating - which means we either have to eat away from him or we all eat the same thing. And I'm a chips & salsa kind of girl. That's the one food I reach for when I'm stressed (besides chocolate, of course - which Noah also can't have), but Noah's allergic to corn and tomatoes tear his stomach up. I've cheated a lot recently with wheat and gluten and would give him chicken nuggets and things like that if they were organic and if the wheat was organic. I guess I've finally realized that just because it's organic doesn't necessarily mean that it's good for you. So I actually broke down and cried in Wild Oats yesterday. I haven't cried in a grocery store since we first started the diet 3 years ago. But I was super vigilent about reading the ingredients and sooooooo many gluten free things have corn flour or potato flour in them. And he's allergic to both.

He has come around a bit to eating my cooking. Not loads of it, but some. I made some awesome sweet potato, kale, and walnut patties coated in rice flour - but he wouldn't touch them. He wouldn't eat my GF (gluten free) cookies, and it took him two days before he decided to try one of my GF pancakes. But he has decided he likes them - thank goodness. But he won't eat the parsnip or sweet potato fries. However, he ate almost an entire cauliflower sauteed in butter and rice crumbs tonight - yea!!. (Organic butter is the only dairy he can have).

I'm trying to think of what else has been going on. We found out that he's having problems with olive oil, so we've taken him off that. His skin is getting better, but it's finally starting to scab over - which makes it really itchy, so, of course, he's starting to scratch which makes it worse. It we could just get him past the scab part, I think we'd be okay. I think we've removed him from the environment that was causing the skin to get so bad, but we're having a rough time with his skin actually healing.

We're going home this Friday and will be back for a week. Eli has dental surgery, so we need to get his physical and then check him into Children's on Wednesday. I'm nervous about going home. I hope both boys do well, but I think it'll be harder on them once we have to leave and come back to TN. It'll be interesting, though, to see if anyone thinks that Noah's made progress while we've been gone. I can't really tell. I think I'm too tired and probably over-analyzing it all, etc. Anyway, it'll be good to be home for a few days and see Sim and my parents - and to maybe catch up on some much needed sleep!

We just completed our 10th session today and we've completed 9 BRT/NAET sessions. We're a 1/4 through! Can't wait to see what happens with the next 20.

Will keep you all posted!

Noah's Mom