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.

Friday, September 24, 2010

Noah's Autism Therapy Part 2 - Dr Rosenthal (One of the Key Players)

We've used TONS of practitioners in the past - not only locally, but all over the U.S. But we never did manage to use a doctor living in Hawaii. Darn!



Anyway, over the years we've weeded down Noah's therapies significantly. I'll be blogging about each one over the next few days. Each one is a therapist that we've been using for at least a year or so and they're the ones that I consider essential to Noah's daily life. In other words, they're the ones I go to bed praying about each night and begging God to please let them each live to be 150 and not retire early. Thank you so much, amen.


Today, we'll start with Noah's chiropractor.

1. Dr. Rosenthal




This is Dr. Rosenthal. He's Noah's chiropractor. And he's really good. (And, no, I didn't take that picture. Come on, now! I swiped it off his website.)


I love chiropractors. They do so much more than just back adjustments. And, honestly, this is just my opinion, I think they're really picking up where a lot of medical doctors leave off - especially in the field of autism. They work with allergies, sensory issues, balance issues. I find the whole field just really fascinating.


Anyway, we've been seeing Dr. R for about the last 16 months. Last summer (2009), we really hit it hard and all three kids saw him twice a week for for about 2 months. We saw enormous changes in Eli that summer. He learned to ride a bike. His balance became stellar (he started walking on ropes tied between two trees. Uh huh, he did!). This was soooo big for a kid who'd been diagnosed by an OT with a coordination disorder 9 months earlier.


Last year, we stopped going as much - mainly because our insurance changed and also because we were trying to save gas by not driving to Dallas so much. But this past summer, at the beginning of June, Noah started having huge meltdowns and started banging and hitting his head over and over again. So we experimented a bit and realized that if we go more than one week without Noah getting adjusted, then he'd start screaming and headbanging.


I don't really understand the science there, but he loves going to see Dr R. He loves getting stretched out and twisted like a pretzel. And it keeps him happy. So we do it.


Anyway, Dr. R adjusts Noah and does certain exercises with him each week and then gives us homework. I love that part! No, really, I do. I love being a part of Noah's therapy and seeing small bits of progress here and there.


Now, honestly, I can't really - in a medical type way - explain exactly what Dr R does. It involves phrases like "firing up neutrons" and "getting both sides of the brain to communicate" and other stuff that just flies straight over my head.


What I can tell you is that it involves cranial sacral therapy (which is on top of my "I really really recommend this therapy" list, body adjustments, stretching, balance games, and exercises.


And while I'll go over the exercises and equipment used in another post... just to give you an idea though, at home, we follow Dr R's exercises for Noah by using a large stability ball, a bosu ball, and a massage table. Most of the stretching is done with Noah on a massage table (that we bought at a garage sale) while I sit on a stability ball. I do a lot of foot stretching and massaging (remember, Noah also has cerebral palsy), midline crossing... cross crawl patterns, body brushing, massaging, etc. Noah stands on the bosu ball and does Captain Morgans against the wall to open up his chest (he leans forward while he walks and this has really helped his posture). We sit him on the stability ball and play "bucking bronco" while holding onto his feet. He looooves this! We'll put the stability ball in a corner and hold Noah's hands while he hops up and down on it. We'll put him in a swivel chair and spin him around and around. Things like that.


It looks really easy.... all these things that Dr R does in his office. And, I admit, there was a time when I thought to myself... "This is really nothing. I can get all of this at OT. I don't understand. How is this helping? Am I wasting my time? Am I wasting my money?" And, truthfully, if our insurance hadn't changed (again!) and allowed us to see him for less than we had been paying before, I might have stopped. It's only because our insurance changed that we can afford to see him once a week.


However, after going for a year and seeing the difference in Noah from going once a month to once a week and then seeing the change from Noah only going once a week without me working at home with him to seeing the improvements from me working at home with him... (wow, is that a long sentence or what?) I can honestly say that it's a therapy we recommend.


The plus side is that he does accept insurance. Yay! Most people who work with children with autism DON'T take insurance. After we pay our deductible, it only costs us $12.80 a session. Yee haw!


Another plus side is that we only go once a week for 30 minutes and then I get exercises to do at home for the rest of the week. I'm not dragging him here and there and everywhere all week long. I get to spend time with him at home while doing his exercises. I do see progress being made.... it's terribly, painfully slow, but it's happening. And he loves it!


The downside is that it is in Dallas.... so we drive 3 hours RT once a week for a 30 minute appointment. He also has a lot of clients and gets booked up fast. The initial consultation is also a little expensive. But if he takes your insurance and your deductible is met, it can be a really cost effective therapy. Don't expect instant results (although we saw near instant results with Eli), but if you want a slower, non-invasive therapy that your child will probably like and that you can maintain at home, then you'll definitely want to check him out.


Also, if you just strictly want Cranial Sacral Therapy, Dr Adele Kestner works in the same building. We saw her for 3 years and she is amazing. She doesn't take insurance and I think (unless her prices have gone up), she charges $50 for 30 minutes. I will say, though, that cranial sacral therapy is one of my favorite therapies. Noah had really bad headaches and sleep patterns at one time... screaming and screeching and crying all the time. Cranial Sacral Therapy helped relieve that head pressure. In the beginning, we went 3x a week, then 2x, then 1x, then once every 2 weeks, then once every month.

Can you see why we ended up in so much debt? And this was the cheapest therapy we were doing at the time! (And let me tell you... if I had to do it over again, I would. In the beginning, it cost a ton, but I cannot begin to tell you how much cranial sacral helped.)

Both Dr Kestner and Dr R are Christians. They are also both very honest. They care about the patient - not the $$$. In fact, Dr Kestner referred us to Dr Rosenthal because he takes insurance. She knew we'd stop seeing her, but it didn't matter. She really cares about Noah.


You can find Dr Rosenthal's info HERE .


You can find Dr Kestner's info HERE.


Next time, I'll talk about Soma and RPM. We saw Soma last Saturday and Noah blew me away with his smarts!

Thursday, September 23, 2010

Noah's Therapy Part 1 - INTRODUCTION




I'm so overdue for a post on what therapies we do with Noah. Partly because I have it in my head exactly how I want it to look and it'll take a lot of time and partly because it'll involve posting pictures and I absolutely despise posting pictures on Blogger.


But if I don't sit down and do it then I'll never get around to it. So, I think it'd be easier to break it down into parts... .and who knows how often those parts will be posted... but it's a start.


Now, I want to issue a disclaimer on all of this. I don't have any medical evidence that it works. For all I know, we could be spending our money and doing exercise and giving such and such remedy and driving to Austin here and there and it might not be making a bit of difference. (Although I believe it is making a difference.) The point is, though, that it's not hurting Noah. There was a time, several years ago, when on the advice of medical doctors, we were holding Noah down each day and syringing disgusting tasting concoctions down his throat. We were holding him down while was being pumped full of chelation IV's and we were rubbing nasty "skunk cream" (it totally smelled like skunk) on him to help him detox.


And the thing is... that stuff actually works! It does. But not for Noah. Noah is what you'd call a tough nut. He's hard to crack. All these things that worked for other kids (and trust me... I've seen kids recover from autism!)... all the HBOT stuff and saunas and chelation and NAET, and vitamins, and B12 shots, skunk creams, and weird Chinese herbs, and foot baths, and QRS's, and RNA drops, and, well, you name it, it didn't work. Not for Noah. And I have a feeling there are a few of you out there who tried it all, too, and now you/re left bitter, disappointed, feeling hopeless, and pretty much broke.


Or maybe that's just me.


Anyway, I'm not saying all the above was a bunch of bunk. I do think some of the body clearings helped. Do I think they did $5,000 worth of good? Hmmmm..... And some of the diets did actually help. The Blood Type Diet gave Noah solid stools for the first time in ages. We learned a lot from the rotation diet, and I'd love to try and make coconut kefir again.


But for the most part... it didn't really help. And some things... like chelation... made it a whole lot worse.


About 4 years ago, after we'd exhausted all of our savings, our retirements, and maxed out our credit cards, and were living with my parents, we decided to give it a one-last shot and the kids and I moved to TN for 3 months on the promise that if we spent three months there at a certain clinic that Noah would recover.


Can you tell how desperate we were at that time??


When we got back - and Noah wasn't any better - and we didn't have two pennies to our name, we knew we had to stop. And that was a hard, hard decision. How do you give up on your child? We'd spent all our money and now we didn't have a dime left to try anything new.


I prayed and prayed and prayed and one day I heard God's voice and it said, "Just spend time with him."


So we stopped everything we were doing and we started noticing changes. He was sleeping through the night. He started smiling again. He seemed relaxed... and why shouldn't he be? He wasn't being held down and forced to take syringes that tasted like pig poo.


It took a lot of faith to just quit what we were doing. And, honestly, if we'd had any money at the time, I would have dived right back in to countless therapies. The only reason I listened to God was because I couldn't afford not to. Quite literally.


Over the last couple of years, though, we have introduced some new therapies into our household, but the rule is always...


1. Will it hurt Noah?

2. Can we afford it?

3. Is it a therapy that I can do at home? (i.e. Will it allow me to spend time with Noah?)


The main goal is for us to go to a therapy, learn the treatment, and continue to do it at home until we go back for new exercises or homework.


In my next post, I'll be talking about the Key Players in Noah's therapy "closet". And in further posts, I'll talk about the different exercises we do, what we consider to be essential supplements to give, what things we can't live without out, and whatever else I come up with. It's not a very good plan, but it's a plan nonetheless.


I know this might be a really boring couple of weeks here on "Recovering Noah". But, I don't know, I'm always fascinated by what other people do with their kids - especially if they have autism. So feel free to share what you do, too! I'd love to know.


So stay tuned for Part 2!

Sunday, September 19, 2010

I Told You He Was a Little Maharaja



At your service, little king...

Motherhood..... It's back breaking work!

Saturday, September 11, 2010

Nandi's Sweet New Ride

Nandi has been desperate to ride a bicycle ever since Ei learned to ride last summer. (His training wheels came off this past summer!) Anyway, Nandi tries and tries but she just can't keep her left leg on the pedal. A wonderful organization named AMBUCS donated a big wheel trike to Nandi last year that had foot plates with velco straps, but, unfortunately, it was too low to the ground for her to use her upper body to steer it. (Nandi has some balance issues, too, because her whole body is sort of thrown to her right side.)

But.... all that changed today when my parents stopped by a flea market in the little town next over and saw a Thistle Tri-lo. Oh my gosh.... these things are made in Glasgow. How it ended up in a small town in East Texas is beyond me. They brought it over this morning and Nandi LOVES it. It's perfect for her. And I'm going to get Noah on it during the day when she's in school and pedal with him hand over hand. He needs to build up the strength in his left hand.

Although they both have the same type of CP (left hemiplegia), it affects them differently. Noah walks kind of lopsided, but his foot is flat and he rarely uses his left hand and Nandi is completely on her toes (like a ballerina) but has good control of her hand. Sooooo cool that the bike will benefit both of them!

So here it is.... Nandi on her sweet new ride!


video

Tuesday, September 07, 2010

Be Careful What You Pray For....

Because God definitely has a sense of humor!

You know how I've been praying and praying and praying for Noah to get better? Specifically that his brain and body would start making connections - because if I've told you a 1,000 times then I'll tell you 1,001 that I truly believe Noah's brain is that of an 8 year old boy. It's just that his body won't obey his brain and it's more like that of a 12 month old.

Well, I am now excited to tell you that I'm the proud mother of an almost 9 year old child who is going through the Terrible Two's!

It sounds crazy to be elated over that, doesn't it? But I am so elated. Well, I'm tired, too, because two-year old's are exhausting and exasperating at most times, but it's this weird sort of euphoria that I'm going through. I wanna cry and laugh and dance all at the same time. It's kind of like those pictures you see of villagers who are out dancing in the streets in the middle of the rain... just really soaking it up and rejoicing. Most people would be indoors hiding, but some people embrace it and thank God for it. Does that make sense?

Anyway, something is definitely happening with Noah. He is LOVING having Eli and Nandi at school all day. It's a little funny, actually, because for the whole first week and a half of school, he'd get so mad when we had to pick them up. You know if he could talk that he'd be saying, " Ugh. Mommmmm! Why do we have to pick them up noooowww???"

I have to say, it's just been really nice having him home to myself. It's been 6 years since it was just the two of us and it's been awesome to just be with him and watch him and learn from him. I almost can't even formulate it into words except to say that he's really blossoming right now. I think he relishes in the quiet. It's like, our house was just one big sensory overload before school started and now we both have time to think. We can actually think now because our heads are not full of shouting and bickering and just noise all.the.time.

Sorry if this isn't making much sense. I'm trying to get all this out before the kids wake up...

Anyway, Noah is just so active right now. Before, little things didn't bother him. But now he's actually initiating potty-training (whoo hoo! He doesn't like the feel of wet or dirty clothes now.. so he's coming to get me when he needs to be changed) and if he spills something then he drags me over and shows me (that has never happened before!). He tipped yogurt all over himself and came and got me. He tried to turn the water hose on to fill up the little pool. He emptied our fridge and spilled everything... but at least he told me about it. He's taken out all of our CD's. Scratched a few of Sim's old Genesis records (his Peter Gabriel Genesis records) while trying to spin them.

He's constantly dragging me to the bathroom and pushing the little recordable picture frame that has a picture of a toilet on it and says, "I need the potty." He's realized that if he presses the button then I drop everything I'm doing and come running. Cheeky little thing. He has totally realized that it's the one sure-fire way that he has 110% of my attention... and I kid you not when I say that I spend a great deal of my day sitting on a little stool in the bathroom.

(Okay, am I just totally perverse or did anyone else find that sentence absolutely hysterical? I'm sleep-deprived. What can I say?)

Let's rephrase that. I spend most of my day sitting on a little 4-legged stepstool while Noah thinks it's the funniest thing ever to push the "I need to potty" button over and over again while laughing.

He's also letting me know that he wants to do his therapy exercises and he'll lead me over to the massage table and put my hand on whatever part of his body that needs to be worked on. Right now, he's enthralled with me popping the toes on his left foot. LOL. Don't ask. I don't know why he loves it, but his left foot is super tight and his toes are constantly curled under and I guess it just feels good. Plus, who wouldn't want a 24 hours masseuse at their beck and call?

I tell you.... I'm going to start calling him my little maharaja....

Okay, the whole house is up and I've got to cut this short. I just wanted to give you an idea of why this blog has been so quiet lately. It's because Noah has been so busy! PTL and do a little dance!

Just quickly, though, Nandi and Eli are loving public school this year. We've seen a massive change in Eli... oh my gosh, our life is full of some really great changes right now... and I am so at peace with the decision not to homeschool them this year.

Gotta run. Just wanted to give a quick update. Sim said he'll take some pics of me and Noah working together so you can see the type of things we're doing at home. Don't know about you, but I love to see what other families are doing with their children. I mean, exactly how do you homeschool a child with "severe" autism?? And I hope to also tell you the different therapies we're doing now. That post is oh... about a couple of years overdue??

Have a great week!