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.

Tuesday, October 31, 2006

Noah's Genetic Results

You all know that we've been doing biomedical treatment for Noah since he was 19 months old - but he is such a slow responder and we just couldn't figure out why. I mean, it seems we have tried everything and he just doesn't seem to respond as well as other kids.

Well, almost three months ago, we sent off for a Nutrigenomic test which takes Noah's DNA and lets us know how his methylation cycle works - which is basically his body's ability to detox. It's actually a bit more scientific than that, but I have a hard time getting my head around it all, so that's the easiest way for me to understand it. Anyway, we got the results back last week: 1 page of results and 78 pages of explanation. Now you know what I've been doing this past week.

I still don't understand it all, but basically the methylation cycle has a long way route and if it's compromised, then you take a short cut. Well, Noah's long way is compromised and so is the shortcut - which means he has problems in both of those areas. There's also a bunch of other things, too, but I'm only on page 21 and I've had to read the first 21 over and over just to finally get it all to soak in. But what it means is that we can give supplements to help overcome these mutations, but it's going to be a long and tricky and hard road. It could take several years - but we should be able to get his body working again. But one problem is that some of his mutations counteract each other. For example: he has a mutation that means he needs B12 more than anyone else, but he also has a mutation that fights against B12. So, his body is in desperate need of it, but if he gets it, his body also fights against it and causes all sorts of problems. So we have to go low and slow. We're talking uber baby steps here, but it is possible for him to get better.

It's heartbreaking, but it could be worse. I know of other kids who have worse mutations than Noah does. On a plus side - it does give us a blueprint to follow and steps to follow and lets us know that Noah's not going to wake up tomorrow and be fully recovered. This is a long process and he'll get better over time, but there is no magic bullet for Noah. And finally realizing that - after 3 1/2 years - is such a relief. It just takes off so much pressure - in a weird way. We'll just continue to live our lives and do therapies with Noah and supplement him so that he can get his body back together and start to detox - but knowing that genetically it's going to take years is helping us to relax a bit.

I was trying so hard for Noah to be recovered before he starts kindergarten next year. And, by the grace of God, I know it can happen - but without God's hand in that, he won't be recovered by next year. But a year from now, he'll be a year closer to recovery - and that's how we're trying to shape our mindset. It's no longer... "He HAS to be mainstreamed by Kindergarten". It's more of "Where is Noah going to be a year from now? 5 years from now? 10 years from now? 20?"

You know, I stopped doing some of Noah's educational therapies b/c I kept hoping we'd find the "magic pill" and he'd start talking and start learning. So, now, knowing that it's going to take years and years, we're introducing the PECS picture system of communication again. We're working on some life skills - like getting dressed and feeding with a spoon and fork. Noah can't do these things - so we're actively embracing it and making it a top priority. Instead of me doing everything for him, we're making him be accountable for things (as much as we can - which isn't much right now). He's not liking it one bit, but he is starting to do some things on his own now.

I'll keep you all updated on this genetics thing. Like I said, we're going low and slow. Financially and emotionally, we have to. Plus, Noah's body is still pretty messed up. He can't handle a lot at once. We are going to his Autism doctor today in Plano (who we haven't seen in about 7 months) and we're going to do do a CBC blood work-up, urine & fecal metals test, urine amino acids, urine essential elements, fecal analysis (for bacteria and parasites - yuck), and a urine Organic Acids Test. That should cover all the basics - it's been almost 3 years since we did some of these tests. I'm also looking for a new dermatologist b/c Noah's skin is NOT getting bed. Sigh.

Oh! I also have to go to Whole Foods in Dallas tody to buy... get this... organic maxi pads! We can't take a urine sample on Noah to save our lives, so someone suggested getting a cotton organic maxi pad and sticking it in Noah's diaper before bedtime. In the morning, we have to stick a syringe to the pad and syringe Noah's pee out of it. Gross!!! I have NO idea if this is going to work. I guess organic maxi pads don't have those "triple layers of protection" if you can actually syringe pee out of it. Who'd want to use it then? Give me the Walmart brand anyday and I'll concentrate on saving the planet by buying organic apples. :-)

Noah's Mom

Noah's First Week at School

I cannot believe Noah's first week of school already came and went. Okay, so it wasn't as bad as I thought. He didn't scream or cry and I didn't have to hold him up by one arm and drag him into the building. Oh no. Just the opposite. He practically broke free from the amazingly tight grip I had on his little hand and ran down the halls. He LOVES school - and I'm not quite sure how I feel about it. On his second day, he actually broke free from me and ran to his teacher and started shrieking with delight... leaving poor Mommy standing in the wings like a 12 year old girl at her first middle school dance. And on Friday, I finally got the nerve up to drop him off at the front of the school and let his teacher's aide walk him in to school while I sat in the car all teary-eyed and hyperventilating. (Okay, so that's a slight embellishment, but I did feel like my heart was going to come out of my chest). He was soooooo excited. He was practically dancing on the sidewalk with excitement. He does this little shuffle thing with his feet and hops up and down when he's excited and let me tell you, he was really going at it. I'm surprised he didn't burn a hole in the pavement with all his shuffling and hopping.

Currently, he's only going 1/2 a day but they want to make him go full day next semester. I think I'm going to keep him in for 1/2 day only. The afternoon is nap time and we all know how that'll go. Instead, I'm actually getting myself pretty darn organized (yes, I can hear jaws dropping all over the U.S. at that statement), but I have finally gotten myself on a schedule and I'm a whole new person. In the afternoons, I'm doing ABA with Noah and circle time and working on getting him to do the PECS system. I just think it'll be more productive for him to go to school in the morning and then come home in the afternoon for some in-home therapy.

The important thing is that I can go on record and say that the school is not as bad as I thought and that he does seem to really like it.

On another note, Leveta, I got your blog messages but for the life of me can't figure out how to reply to a blog message. So, I just wanted to thank you for your messages and thoughts and prayers. It means a lot. :-)

Noah's Mom

Monday, October 23, 2006

Not Sleeping Again

I know I should wait to write a blog entry... I'm so tired and feel very depressed and so I'm sure I'm just going to moan and lament - but I haven't updated in a week, so thought I'd better write.

Noah is not sleeping again. I don't understand what's going on. For two weeks he slept 12-14 hours a day and his shrieking decreased by 90%. But for the last week, he's getting worse and worse. Thursday night, he did not go to bed until 6:30 am. Yeah - you read right. 6:30!! And he went to bed last night at 9:00 and has been up since 2:30 - shrieking. He shrieked for 3 1/2 hours straight. I'm about to pull my hair out. And he starts school today. We have to leave in a little over an hour and guess what? Oh yeah. He went back to sleep about 10 minutes ago.

This is just nuts. I am trying so hard to figure out what is causing this. This is just back to where we were in TN. So.. .we did pull the carpet up and put down new floor. We got the lock-in, no-glue wood floor to keep it all as chemical free as possible. We did have some people come out and clean our air ducts and they sprayed some nasty medicine-y smelly type of concoction in our air vents. But I can't smell it anymore. Is this what it is?

My word. Just put that boy in a bubble. What's a mom to do?

So, I'm all upset about him starting school anyway. I just don't see how any school or any teacher is equipped to deal with Noah's needs. Teachers are overworked as it is and have several different students with several different special needs - how can one teacher and an aide do any 1:1 and actually teach the kids to learn? It's impossible. I mean, I have faith in teachers. But I think teaching special ed must be the hardest job in the world. I have a hard enough time with one Noah. Can you imagine having 10 of them?

Anyway, I'm trying to organize myself so that maybe we can homeschool starting in January. I'm still researching it. I know I can do it - but Noah has got to start sleeping first. And his diet and supplements and therapies would be so much easier to manage if he were home. I'm just scared to death to send him off. It makes me sick just to think of it. Okay, I can't even write about it anymore because it's making my stomach hurt. And this isn't even kindergarten, folks! This is PPCD - a preschool for kids with special needs. Can you imagine what the first day of kindergarten would be like??

By the way, Noah turned 5 last week. It was bittersweet. We started autism interventions when he was 19 months old and we had such big dreams. We just knew he'd recover by the time he was 3. Then it was 4. Then it was 5. We had no idea he'd still be in diapers - that'd he still be silent and not talking. And all of the other kids who started back when we did - they're getting better. And better. And better. And we are at such a slow pace. I'm not even sure you could call it a snail's pace. Where slower than that!

He's such a sweet kid, though. He's the love and joy of my life. Both my boys are. I just adore them both so much. It's just hard sometimes. It's so much better with a good night's sleep. It's the not sleeping and shrieking that do me in. I get a raging headache from it. It's just that I don't understand what we're doing wrong. We've done everything that everyone else has done - and more - and we just keep backsliding. What gives?

Okay, so take all of this with a grain of salt. I am seriously sleep deprived and nervous about sending him to school. I feel like I'm handing him over to an executioner or something.

On a plus note, I have used these last 4 hours to update Noah's PECS book. It's a picture system that we started 2 years ago, but stopped because we couldn't keep Eli out of them. He was a baby then and tried to eat all of the cards. Anyway, it should give Noah a means of communication and maybe - well, definitely - this will help him out loads. It's going to take sooooooooo much patience and time, but will be really worth it once he gets it down. Please pray that I have the patience to teach it to him and that he actually picks it up. That would mean a lot to us.

Happy Monday! (Good grief. Is it only Monday?)

Noah's Mom

Saturday, October 14, 2006

Noah loves Baby Alaina

Can you believe it? I'm actually posting two days in a row. That goes to show you what a good nights sleep will do for you! :-) Thank goodness Noah's sleep patterns have continued and he is now sleeping about 12 hours a night. I cannot begin to explain how wonderful that feels!

I think most of you know that my brother Mark and his wife Beth adopted a baby girl at the end of May. Her name is Alaina and she's 4 1/2 months old. Man, she is the most beautiful little baby girl in the world. She's gorgeous! Well, she was sitting in her infant carrier on the kitchen bar and Noah was perched on the bar, too, with me sitting in front of him and I said, "Noah, where's the baby?" and he actually turned around and looked at Alaina. Well, we were stunned! So we asked him again and again and each time he turned around and looked at Alaina. We didn't even know that he knew what a baby was! I mean, we didn't even know that concept even existed in his head. A few months ago - shoot, even just a few days ago - he only understood less than 5 verbal concepts. And know he nows what a baby is! And literally just a minute ago I walked into the living room and said, "Hey Noah, do you want some bacon?" And he turned around and followed me into the kitchen. I cannot believe he is starting to understand some things. His receptive language (what he understands) has always been so low. And now it's improving. And most kids don't start talking until they start understanding things.... so....... maybe he'll start talking in the next few months or next year. Yea!!!

Anyway, back to Alaina... Noah tried to give her high fives and kept touching her hand. He was so gentle with her. We did notice that they play with the same toys. I'm trying to focus on the positive and not dwell on the fact that my almost 5 year old (he'll be five on Monday!) is playing with the same toys as my four month old niece. But on the plus side, it was cute to watch them play side by side. Noah's Aunt Jane and Uncle James gave him a Little Tykes piano for his 1st birthday and he STILL plays it with all the time. Well, Alaina loved it. So they took turns spinning the spinner on the piano and Noah was so gentle with her. It was really sweet.

Oh, and another first! Noah walked into the kitchen holding a ball. Not only that, but he used both hands. There was a time when Noah couldn't even move his left hand. His stroke was on the right side of his brain and really affected his left side of the body. When he was really little he couldn't even open his hand. It stayed clenched all the time. But yesterday, he actually picked up a ball with both hands and carried it all the way from the living room to the kitchen. I think that's the farthest he's ever carried anything with two hands. And he hasn't even showed an interest in balls since he was about 22 months old. It seems like no big deal, but we all noticed it. We were like, "Did you see Noah??? He carried a ball. A ball!!" So we got down on the floor and rolled it back and forth. He wasn't too interested, but still. It was great family interaction.

So, we have had a great couple of days here. I know that there will be some rough roads ahead. We have stopped all therapies and supplements (except for daily mineral drops) and just giving him a break - which is obviously what his body needed. But we will have to pick up and start again.. which I'm sure will cause some regression. Ugh. But then, once he goes on a break, he seems to really progress. So there's definitely some sort of pattern going on. We are just enjoying things right now and really having lots of fun with Noah right now. We'll deal with all the other stuff when it happens.

On another note, Sim ripped out all of the carpet yesterday and bought the new flooring. I think Dad and Danny are putting it in next week, so we should be back in our new place in a week. Sim says the house still smells of cigarette smoke, so we need to crank the air purifiers up again and open all the windows. I think we're going to take down all the mini-blinds and give them a good scrub and maybe that will help. And Sim cleaned all the ceiling fan blades. We probably still need to wash all the windows and get the baseboards cleaned up... and if that doesn't get rid of the smoke smell then I don't know what will. We're trying to avoid painting because Noah can't be around fresh paint. So please say a little prayer that all this works. Noah's still scratching like crazy and I know staying here in Midlothian with all the pollution is not doing his skin any favors. We are so hoping his skin will eventually heal up. He's STILL on steroids. It's been almost 6 months now and that's not good for anybody.

Hope you all have a good and restful Saturday.

Take care,

Noah's Mom

Friday, October 13, 2006

New House Woes...

Okay, there's good news and bad news....

The good news is that Mom and Dad have let us temporarily move back in with them. The bad news is that we've had to temporarily move back in with Mom and Dad.

Oh, where to begin. Okay. First of all, we LOVE our new house. It is awesome and beautiful and so peaceful. The problem is that we had NO idea that the previous occupant was a smoker. And we're still racking our heads over how we missed that oh-so-important detail. I'm really sensitive to cigarette smoke and can usually detect it, but I didn't smell a thing when we viewed the house. There were no ashtrays, no cigarette butts, no smell. The lady who owned the house was always present at the viewing and sprayed it heavily with a citrus spray when we came. We thought she was just being conscientious or something. Well, when we opened the doors to move our furniture in (after the house had been empty and shut up for several days) the smell of cigarette smoke pretty much choked us. I mean, we were stunned. So, we spent days airing the place out. We placed air purifiers in all the rooms. We vacuumed over and over again with our Dyson Animal (which I'm going on record as saying is the best vacuum in the world!) We used natural odor thingamajigs. And we thought we'd gotten it all out. Noah was doing great. We didn't smell it anymore. But then, some friends came over and as soon as they walked into our house, they wrinkled up their nose and asked, "Who's been smoking?" And then.. we spent the night with Mom & Dad and when we took our clothes out of our backpack, we were hit with the smoke smell. All of our clothes smelled of smoke. It turns out we thought we'd gotten rid of the smell - but actually we had gotten used to it. Oh! And I forgot to mention that Noah started scratching his skin until it bled. (Sigh).

Soooo.... Sim is over at the house right now ripping up carpet. We're moving everything out of the house, ripping up the carpets and having to put wood floor down. We knew we'd eventually have to rip up the carpet anyway because of Noah's allergies, but we were hoping to wait a year or so. Now, we're staying with Mom and Dad until it all gets taken care of. Hopefully, we'll only have to stay here a few weeks. In the meantime, we're having to wash every item of clothing, all of the linens, ALL of my Ebay items, and we're praying we don't have to buy the kids new mattresses. The smell is in everything.

However, it's not as bad as it sounds. Noah is doing so good at M & D's house. He is becoming more and more aware. I mean, on a scale of 1 to 100, he's at a 15 - but still... he was at a 2 just a few months ago. He is becoming aware of Dad and will go up to him and reach his arms out to him. He will sometimes turn his head if we ask where Eli, Papa, Nonna, etc, are. He is responding more to us. The other day he was playing in the other room and I reached my arms out and said, "Hey, baby. Come here" and he put down his toy and walked out of the room and into my arms. He has NEVER done that. Never ever ever in this whole life. And Dad called him over and he put down his drink and came to Dad. That was a first, too. Just a few minutes ago, Eli gave Noah a toy and I said, "Oh, Noah. Eli loves you. He's such a good brother to Noah". And Noah turned his head and looked at Eli. Now, he's given him hi-5's before if Eli comes over and sticks his hand up and asks for one.. but he has NEVER looked in Eli in the eye before. He's never responded to Eli's name. But today he did. And that's a first!

So things are looking up. We do, however, still have many many many years of hard work. It's like chipping away at a huge iceberg. And everyday, we chip away teeny tiny bits. And it can get so overwhelming and depressing because it sometimes seems that we chip away all day and the iceberg doesn't get any smaller. And sometimes, our equipment breaks and we have to spend all our money on new equipment. And, sometimes, we take long breaks because we're just so tried of chipping all the time. And, then, sometimes we look at the iceberg and see that we've actually come a long way. And even though that blasted iceberg is still huge and will take years and years of hard work, if we don't quit - if we don't give up - if we keep chipping away and away - it WILL get smaller and smaller. And so we pick up our equipment and we start again. Because we have to remember that in the end, all that matters is that the iceberg is getting smaller. And the smaller it gets, the better it gets.

Hope everyone has a good weekend,

Noah's Mom

Monday, October 02, 2006

Back in Texas... Catching Up

It's been soooo long since I last posted, hasn't it? So much has happened that I don't know where to begin.

Well, after posting about my greatest day ever a few weeks ago, Noah slept 3 hours that night and started shrieking nonstop from 3:00 am on. He basically reverted back to his old self where he just shrieked and stayed up constantly. Sim came on the 17th and after a few days we decided to give Noah a break and go back home. We tried everything we could to get the apartment straightened out. Honestly. We've been working on trying to figure out the problem from the moment we first stepped foot into it - b/c Noah was fine until we moved. So, Sim brought his EMF meter with him to TN and the apartment was so high in EMF's. We couldn't get them down. And then, during the last week we were there, Noah's foot baths started smelling of bleach. I mean, I got a splitting headache from the smell. So Sim talked to our neighbor (whose mom had lived in the apartment before us) and she said the place had really bad mold and they cleaned the place top to bottom with bleach. And the water had the strongest chlorine smell ever. And they chemically cleaned the carpets before we moved in. It was all just too much. Poor Noah couldn't handle it, so we left early. We still have 3 weeks left to complete and will try to go back 1 week at a time over the next year, whenever we can.

Anyway, the good news (and there is some!) is that we bought a house and we've been moving all week. Most of you know that we sold our house in Denton last year and we've been living with my parents for over a year now. It really helped us out financially, but the environment was just really bad. I mean, we had a power plant in our backyard! So, anyway, we've been looking since last October but we just couldn't find something that we could afford. (Well, God answered our prayers. Sim found the most amazing house in a town called Gun Barrel City. It's between Canton and Athens - near Mabank - and is part of Cedar Creek Lake. It's beautiful and just everything we could hope for. And the air there is amazing. We moved in on Thursday and Noah has slept like a log!! He slept a total of 15 hours last night. That's more than he's ever slept in his entire life!!! I think he's making up for 4 years of not sleeping. And Eli just loves it there. We've got squirrels and gorgeous bluejays and we feed them each morning. And Eli has a blast chasing frogs. It's just so quiet and beautiful and peaceful. We laid down on the trampoline yesterday and looked at the sky... and all we could see were big canopies of trees over us. It was heavenly. It's definitely taken every cent we have, so we literally cannot afford to do really any therapy anymore with Noah - except for whatever I make on Ebay, but we think the healthier environment is going to be one of the best things for Noah. It's been 3 days and we've already seen some postive changes. Yea!!!! The only bad thing is that we don't have internet yet. Yikes!!! I'm over at Mom's right now using hers - but hopefully it'll get connected in a week. I am SO suffering from internet withdrawal! :-)

So, hopefully that'll explain why I haven't written in so long. Many sleepless nights, then we packed up and moved back to Texas, then we moved to Gun Barrel City, and we don't have internet - yet. But things should be getting back on track in the next week or so. Noah starts school next week and I'm a nervous wreck. Oh, and did I forget to mention that Sim won't be living with us until he can get transferred?????? We don't know when that'll be. It could take a year! But the commute to Irving is too far. But it'll all work out. We are so confident that God led us to this house and this new town. I think out of everything that's happened over the last few months that I've realized that things work out so much better when I let God take over. I have such a tendency and urgency for Noah to get better that I often take charge without praying about whether it's the right decision. But we turned over the housing situation to God and he found us the most amazing house that is exactly what we needed and in the area we needed and that we could actually afford. We are still awe-struck that it worked out. But it did!

Hope everyone has a great week!

Noah's Mom