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, June 29, 2007

Noah's New Tryke





As promised, here are some pictures of Noah's new adapted tricycle. He LOVES it. He immediately knew what to do and started pedaling with his hands (with help from Mom). He is definitely the coolest kid on the block. My parents set up at Canton each month, so we took the tryke out there so they could see... all the kids came up and wanted to try it out. Noah was looking at them like, "Get your hands of my bike, you punks". But he graciously let everyone have a go - while I nervously bit my lip and prayed that one of them wouldn't break it.

The people at Ambucs are awesome. We are so grateful for them.

Noah's Mom

Wednesday, June 27, 2007

Things are Looking Up

It's so wild how good things have been lately. We feel so at peace right now with Noah and his therapies. I keep watiting for some bomb to drop and disrupt it all. You know a few weeks ago I mentioned that someone (a stranger, at that!) sent us their old Maclaren Major special needs stroller for free. It saved us hundreds and hundred of dollars. Well, I also mentioned that our OT.... (and I'm going to give a shout-out. It's Therapy Works! in Kaufman and the OT, Melyn, is AWESOME)... applied for Noah to receive a free adaptive tricylce from Amubcs. (http://www.ambucs.com/). The Mesquite club gives out 1 tryke or bike a week and they chose Noah for tomorrow's meeting. Can you believe it????? I wasn't even sure if he'd get selected - and if so, I thought it'd be months from now, but we got the call yesterday. I'm so excited. They're having a lunch tomorrow and they're going to present the tryke to him. I'm sure I'll be sobbing. (Note to self: stick a travel pack of Kleenex in my purse. Nope. Better make it a box). I'll try to post a picture of Noah on his new tricycle tomorrow.

And then... we mailed off the deposit check for Noah's 4-day camp at HALO in October. We had a garage sale last weekend - actually, it was Th-S all day. In Denton, we had garage sales on Saturday from 8-12 and then we were done. Out here, it's like an all week event. And, man, is it exhausting. But I can't complain because after expenses (such as eating at Sonic all week b/c we were too tired to cook) we had EXACTLY the amount of money that was required for the HALO deposit. I didn't even know it was the exact amount until we received our deposit bill yesterday. Now, is that God at work or what?

But, for some reason, I can't help but feel anxious that the floor's gonna drop out from under us. Why is that a lot of people (and I'm including myself in this) can't accept that sometimes good things happen just to happen. Or maybe we feel we don't deserve it. Or maybe we've faced so much disappointment in our past that we're scared to fully embrace the good things in life. These last 4 1/2 years have been the most difficult of my entire life. There's a part of me that says, "It's about time things start looking up. After all we've gone through, we DESERVE it" and the other part of me says, "Don't you go walking around with that attidue or God will surely take it away as fast as He gave it to you". It is scary, though, how things are falling into place. And they are falling into place. Maybe it's just because I've stopped trying to be the Leader in all of this and am finally letting God lead - and trying to accept His will in it all.

So... what's changed? Is it really Noah that's changed and gotten better? Or is it me that's changed? Am I seeing him in a different light? Are the changes real - or is it just my perception? And where did these good people come from? Have they been there all along and I was just too focused on doing everything myself? Why did I carry the burden by myself for so long? Whatever is happening, I'm not going to fight it. I'm just thankful for how things are. It's still hard (such as Noah shrieking at the fluoresecent lights in Walmart today - and everyone glaring at us), but it's okay. It'll be okay. And things are looking up. And the view "up" is soooo much better than the view looking "down".

Noah's Mom

Sunday, June 24, 2007

Our FANTASTIC trip to HALO in Austin



I realized that I haven't posted about our trip to HALO yet. Oh my goodness, it was fantastic. I don't even know where to begin and I'm sure I'm not going to do it justice. I also tend to space out with anything that gets too scientific and technical, so everything I explain is in really simple layman's terms - because that's the only way I understand them. :-)


Soma is originally from India and has a son, Tito, who is nonverbal and considered severely autistic by most people. Anyway, she never gave up on him and eventually taught him how to read, write, and type. They've been featured on 60 minutes and the BBC did a huge program on them awhile back. Well, HALO (Helping Autism through Learning and Outreach) is based in Austin and Soma works with nonverbal kids and basically assesses their learning style and the way they best learn so that we (parents, teachers) can teach them. A lot of the kids she works with end up being mainstreamed in school with an aide trained in RPM (rapid prompting method) and do GRADE LEVEL coursework. So, we went on June 15th and in 15 minutes she had accomplished more with Noah than 3 school districts in the last 3 years. She realized that Noah needs visual and tactile stimulation to communicate. He can't see or process information that's laying flat on a table - like most kids do. The material has to be held up vertically in the air about 3 inches from his eyes. He also has to see your lips move - so he needs direct face to face instruction. When he starts to stim, she found that tapping his hand or putting a piece of tape on his hand will cause him to redirect his focus to the question you're asking and he chooses the RIGHT answer. I kid you not. Oh... and the reason his IEP has stated "Noah will stack 2 blocks on top of each other" for the last THREE years is because he never could do it. Turns out he has very poor motor planning. He can't hold a pencil... not because he's dumb... but because motor planning isn't a strength of his. Basically, Soma believes that all children with autism are actively learning and absorbing info everyday, but can't communicate or express it. Instead of forcing them to learn like everyone else -sitting quietly, hands on the table, eyes looking ahead, and being dead quiet, she recognizes their learning strengths and works with that. Right now, Noah is choosing between two choices. Ex: I'm thinking of an animal. Am I thinking of a r-o-c-k rock or a h-o-r-s-e horse? And she writes horse and rock on two separate pieces of paper, taps his wrists, holds up the papers 3 inches from his eyes and he chooses the right one. She does it with numbers, too. "23, 24, 25... what comes next? 26 or 21?" Well... Noah was counting all the way up to 70,naming animals, parts of the house, transportation methods, and fruits. Oh, and she had him counting by tens, too. But if you put the answers flat on a table, talk to him from behind or to the side of him, he can't answer the question. She is a genius at assessing the way each individual child learns. We go back for one day next month and then a 4 day camp in October. The prices are extremely reasonable - considering what most of us are used to paying for ABA.


We are also very lucky because they only take kids who are at least 7 years or older. Noah is one of the last kids to get in at the age of 5. They upped the age from 5 to 7 at the end of May, but we've been on the waiting list since February, so we were grandfathered in. Praise the Lord! I can't imagine having to wait another year and a half to see Soma. It was the most amazing thing I've ever witnessed and we all needed to see it unfold before us.


If you know someone who might benefit, their website is a WEALTH of information and gives tons of info, case studies, videos of instruction, lesson plans, etc. (http://www.halo-soma.org/). So it is entirely possible to start working with a child before you see her. We spent the last few months just reading to Noah and spelling words and asking questions to get him used to it. Eventually, over the next few years, Soma will help us teach Noah how to read and maybe write or type on a keyboard. They want us to teach him Kindergarten curriculum and talk to him like any other 5 year old.


Can you believe that? They want us to do Kindergarten level work with him!!!!


I mean, in the last three years Noah has mastered 5 IEP goals... and all were recess goals. People said he had severe MR. We (family) were even beginning to wonder. We would get so depressed because it seemed that we had tried everything and nothing really worked. It turns out that we just weren't trying it "the right way". Noah is "in there" in that little body of his and it's all been there this entire time. He is smart! He just can't get it out. Oh! I nearly forgot... for two of the questions, he actually SAID the answer. "Bird" and "car" for "Which one is an animal? B-I-R-D bird or R-E-D red" and "How did you get here? By T-R-A-I-N train or C-A-R car".


I really think we've found his learning style. Of course, it won't cure autism. We are still doing homeopathy and trying to heal his gut. We still do the Listening Program (which I LOVE) for his auditory training. We still see a cranial sacral therapist and now have an amazing OT out in Kaufman. We are inching along at a snail's pace... but I swear, I might be able to imagine the finish line. It's a looooooooooooooooooooong way away, but it's there. And last week.... and all the weeks and years before... Icouldn't see it. So, if any of you have been feeling down about your child or someone you know who has autism, I just wanted to say they are definitely aware and definitely with it. Seriously, Noah was counting by ten's! So that's proof right there.


Well, I just had to share our good news. We are so excited about this coming year. Like I said, it's not going to cure Noah's autism, but it does give him a "voice" and a way to communicate. Can you imagine that in a year or so that Noah might be telling us what he wants for his birthday? What his favorite color is? What he wants to be when he grows up? He might be doing first grade work? It's wild and wonderful to think about. It's watching a miracle unfold.


Noah's Mom

Wednesday, June 13, 2007

The Chronicles of Ben

If you are a parent of a child with autism and receive the Schafer Report, you've probably already read this. If not, it's worth checking out. It's the story of 12 year old Ben, who has autism, and the decisions that led his parents to place him in a residential treatment center. Frankly, it's my worst nightmare. http://tinyurl.com/39vux . I pray it never happens to us. I pray that Noah will recover and be able to live on his own or stay with us forever. I pray that we don't have to send him to a residential treatment center. And I pray for Ben and his family because I know it was the hardest decision they ever had to make.

Noah's Mom

Saturday, June 09, 2007

Welcome to Holland

Most of you who have children with special needs know about this short essay. It's a staple in the special needs community. But every once in awhile I need to reread it, and I thought it would be a great read for those of you who've never seen it before.

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Paying it Forward

We had the most wonderful thing happen to us on Thursday. There's an email group called Hemi-Kids (www.hemikids.org) and it's for parents of children who have hemiplegia- and Noah's stroke or inutero infection (we don't know) caused paralysis and weakness on the left side of his body. Anyway, it's a wonderful site chockful of information and resources. Well, I had posted a question on there about strollers and what kind people use for their kids. Even though Noah can walk, he has no sense of danger or awareness. You cannot let go of him, and we have to keep an iron grip on his hand whenever we walk through a parking lot. He still rides in the baskets at the store, but his legs are getting too long, and he's outgrown his stroller. We are a loooooooooooong way away from having him walk beside us at a store. We still have to put him in his too-small stroller just to go inside post office because he just wants to lay down on the floor and rock. Anyway, several parents responded with the names of special needs strollers that are used with older kids... but they range from $400 to $2000! Out of the blue, a mom in Va. read my email and sent a private email asking if I wanted her Maclaren Major stroller. http://www.adaptivemall.com/mainbug.html Her son hit 95 pounds and outgrew it. Noah's only 30 pounds, so he can be in it forever. So, she mailed it out yesterday and we just had to pay for the cost of shipping. I can't believe it. How did we get so lucky? I am beyond thrilled and so grateful. Also, Noah's occupational therapist in Kaufman is an angel and she's applied for a grant for Noah to receive an adapted bicycle that he can pedal with his hands. If he gets it, then he can start training for the Special Olympics when we turns 6 in October. He won't actually get to compete until he's 8, but training begins at 6. Right now, there's no way he can ride a bike. We took him to Toys R Us and literally had him try every bicycle. The pedals are to small, he's needs pedals that lock. He needs his feet strapped in and a high, rigid back that has a strap to support him around the stomach and push bar that Sim or I can can control while he's learning. My parents have bought several trykes at garage sales, but he really needs one made to fit his needs. So, knock on wood, in 5-6 months he might get one.

It's amazing, when things look so down something out of the blue pops up and makes you realize how lucky you are. Noah is a blessing. He really is. It's hard... harder than anything I thought I could ever do - financially, physically, emotionally. Whoa baby..... especially emotionally. I mean, I cry at Hallmark commercials. What was God thinking when he sent me Noah? I need to take stock in Kleenex. :-) But we are lucky. Not as lucky as a lot of people, but actually luckier than a lot of people. Our family of friends - the moms that all started out in this together.... well, their kids have soared. They're talking and doing so well. Coloring and writing and reading and TALKING. That's the biggie. And we all started out together. And Noah was actually higher functioning than most of them way back then. And somehow it all just passed us by. So, I do get down from time to time. I'm happy for everyone else. I really am, but I do wish we could have kept up with the group. But then I look around and realize that it could be so much more worse. It could be a lot worse. And I wouldn't trade Noah for anything. You know, recently at the CAN Autism Walk at the ballpark, there was a family of about 20 people or so. They were getting their picture made and a little girl, about 5, was in the front. And they were holding up a sign that read, "Would we love her anymore if she could talk? No. We already love here". I know exactly what they mean.

Noah's Mom

Thursday, June 07, 2007

Eli to the Rescue!

Oh my goodness, I don't know whether to be mad or proud at little Eli.

We went to see Dr. Packwood, Noah's eye specialist today, and Eli went with us. After the fit he threw in November, I swore I wouldn't take him back with me. But I didn't have anyone to watch him and thought that maybe he'd matured a bit in the last six months.

So we get there and they have to put these drops in Noah's eyes to dilate them. I reminded them that Noah is the strongest child in the entire universe. I'm not kidding. I see his future as being one of those guys who goes to youth groups and high school assemblies and tears phone books apart with his hands and crushes boulders with his head and lifts a car over his head with one arm. He's got super human strength. So the doctor calls in extra people to help hold him down and Noah is just crying and kicking and screaming. He was hysterical. Well, Eli thought they were hurting him, so he ran up to the doctor and started kicking him in the shins.

Oh yeah. He really did.

The doctor yelled at Eli, which then caused Eli to break into hysterics... because how dare the man who is torturing his brother yell at him when he came to his defense. So both Noah and Eli are in hysterics and crying and wailing. People start coming in to check on us b/c they think something horrible is going on behind the closed door. Then, the doctor says, "This is the last time we can do this because he (Noah) is getting too strong". I am frazzled by that point and burst into tears because I think he means it's the last time he'll see Noah EVER -and I'm thinking, "What are we going to do, now?"

So, Noah, Eli, and I are bawling our heads off. Finally, the doctor explains that he just meant that we're going to have to sedate Noah from now on when he gets his eyes dilated. And honestly, it didn't make feel any better b/c then all I could think of was that we have to pay $1000 for Noah to be sedated for a 15 minute eye exam. And we haven't even begun to explore the dental issue yet. I have no idea how we'll ever get him to the dentist. I'm just praying that his pearly whites stay pearly and white.

So, like any good mother whose kids are throwing temper tantrums and embarrassing the crap out of her, I took the kids to McDonald's afterwards because frankly I was too exhausted to cook and didn't want to serve the family microwaved corny dogs and potato chips. (But somehow deep fried mystery nuggets and heart-attack inducing french fries fit the bill just fine). And that's it. That was our day.

I have to admit, I'm a bit proud of Eli - even though it was mucho embarrassing. He really came to Noah's rescue and it didn't matter one bit that he had to tackle a 6 foot 5 giant to do it. He really is a good brother.

Take care,

Noah and Eli's Mom

Tuesday, June 05, 2007

Pictures


Here's our latest family picture. It's just a snapshot... we can't ever get our act together to go to a studio. Plus, it's difficult to get Noah and Eli to look at the camera at the same time, so for now, the digital camera is our studio. :-)


Noah's Mom

Catching Up

Yikes! Someone left a comment on one of my posts and it made me remember that I haven't updated the blog since the end of April. What is it with me and blogging? Some people do it everyday. I really need to get in the habit of doing that b/c this also serves as a diary of how things are going with Noah.

So... where did I leave off? Okay, last time, I was talking about how Noah spent a week at Children's Hospital. It turns out he had an MRSA staph infection in his leg muscle. He had three abscesses pop up and one that had to be lanced. Oh yeah... seeing that whole lancing thing quickly vetoed any fancy idea I had in my head that I could be a doctor or nurse. It was gross with a capital G. Anyway, they said that Noah's skin is basically a breeding ground for staph infections. Everytime he scratches his skin, he risks getting a staph infection. They said it lives on his skin and then uses the open skin as a portal to infect his muscle and blood. And since it's MRSA, it's resistant to most antibiotics - and anytime he's in the hospital he'll have to be quarantines. So, that's what happened. We were stuck in a little room at the hospital for a week. And since Noah couldn't leave, I couldn't leave. Okay.... do you have any idea what it's like to keep a child with autism locked up in a strange room 24/7 for a week? Well... actually... Noah is unlike any autistic kid I've ever met and he was fine with it. But mama wasn't so happy. I felt like a caged bird and about drove myself crazy. This is why I'm such a law abiding citizen. Prison would drive me insane.

Well, back to the antibiotics. There's only a few that can deal with MRSA and they're all gross and nasty tasting - and you have to give them 4 times a day. Well, the pretty little 26 year old doctor didn't believe me when I said Noah won't take anything orally. Of course, she didn't try and give it to him - she had several nurses and a gal up from the Social Work department try and prove me wrong. I'm sure the doctor didn't want to risk Noah spitting Clandimyocin in her face. (Sidenote: .. why is it that most people think mom's are crazy? Don't I know my kid? If I say he won't take medicine, I mean HE WON'T TAKE MEDICINE. ) Anyway, guess what? That's right, he wouldn't take it. Which was vindication for me but also meant that he had to stay in the hospital on an IV drip for 5 days. So that wasn't really great. A big fat hospital bill because Noah is stubborn. Not so good.

No one mentioned that clandimyocin causes clostridia, which is something that Noah had before and took over 2 years to get rid off. He started having diarrhea in the hospital and then continued to have it after he was discharged, but started throwing up as well. He wouldn't eat, wouldn't drink. The day after discharge, we were back in the hospital for dehydration and then back to the doctor's the next day. They put him back on antibiotics to stop the clostridia.

This is what gets me..... you give a kid antibiotics to stop a staph infection. Those antibiotics cause profuse diarrhea so you give more antibiotics to stop the diarrhea. What side effect will those antibiotics have? Is it just a cycle that continues on and on?

So we called Noah's homeopath.

He took down the symptoms and gave him the alcohol remedy. It stopped all his yeasty behaviors (spinning in circles, shrieking, hitting his head, uncontrollable laughter, waking up in the middle of the night) and his diarrhea within 3 days. Can you believe it???!! We had spent 2 years before trying to deal with it all and a little homeopathic remedy that cost $10 nipped it in the bud.

Well.. .the saga continues.... after that we noticed an abscess the size of an egg pop up on Noah's leg. I was so depressed thinking he'd end up in the hospital again, so we called Dr. Ullman, our homeopath, and he gave us the Pyrogren remedy. Within 3 days, the abscess was completely gone. Even though we've been doing homeopathy for several months, I've spent nearly 34 years with regular medicine ingrained in my brain and in the back of my head I always thought, "this homeopathy is a bit weird. I don't understand it". Well, I STILL don't understand it, but am totally believing it. I mean, I saw that "egg" disappear with my own eyes. The same thing that landed Noah in the hospital for a week and left us with a $25,000 hospital bill (don't worry, we're fighting insurance) went completely away with a $10 bottle of Pyrogen remedy.

Okay, so after the abscess, things are well for about 2 weeks, then we all come down with strep - AGAIN. I'm serious, we've all been sick since December. We're like a bunch of dominoes... one of us gets it and then the other and then the other. I called Dr Ullman who said that you don't mess around with strep b/c it can be serious and you don't have time to fool around trying to find the right remedy. So Noah went on Omnicef, which is the only antibiotic he'll actually take, and it cleared it up. But.... it caused yeasty behaviors and diarrhea AGAIN. I'll spare you all the grossness of posting the pictures of the mess I found in the closet. But... note to self... don't decide to start potty-training after Noah has a round of antibiotics. Another note to self... whoever said that potty-training is easiet by letting the child run around naked will get a big fat cleaning bill from me).

This brings up to today. The weekend was pretty bad. Noah was just sick to to his stomach all weekend and he was shrieking like a banshee. It was exactly how he acted when he was doing chelation. We did the alcohol remedy that worked so great after he was in the hospital, but it's taken a few days to work this time. He didn't shriek as much yesterday and actually slept through the night last night. He was still having diarrhea up until last night, so we'll see how it goes today. Once he starts to get back to his old self, we can start the sulphur remedy again. This is his "constitutional" remedy that is meant to help him improve over all. We did notice some great results when we started back in February, but then he got sick so we had to stop.
I really hope we can start in the next few weeks b/c I want him to floor his teachers when school starts again at the end of August. I think I'll save what happened at our last ARD meeting for later. Let's just say that I really want him to go in there and knock their socks off. There's one lady at the school who really gets my goat. She has the lowest expectations for Noah. I just want to shake her. Ugh. But I won't get into it now.

And that's basically what's been going on. We do have some exciting things on the horizon, though. We're on CD #4 of The Listening Program. It rocks!!! I really think Noah's receptive understanding is improving. We also start Pediatric Occupational Therapy tomorrow and our insurance is paying for 30 visits FREE. Yea! Praise God. And we go to Austin on the 15th for our first session with Soma at HALO. And, of course, we're hoping to start the sulphur remedy next week. So, we're really excited about this summer and hope to see some great things.

I'll keep you all in touch.

Take care,
Noah's Mom