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, April 20, 2007

Noah's Hospital Stay

Oh, wow. These last two weeks have been unreal. A few days before Easter, we noticed that Noah was having trouble walking on his right leg. Now, this is his good leg, so we were concerned - but he didn't cry or wimper or act like anything was wrong. It was just really stiff. When I picked up him, his leg was straight as a board. We just kept rubbing it and thinking that maybe it was stiff because he puts most of his weight on that leg or maybe he jumped too hard on the trampoline or something. Well, on April 7th, I was changing him and noticed that his knee was swollen and really hot. So we went straight to ER. Normally, I might have waited until Monday and just taken him into the doctor, but I was already feeling guilty that Noah'd had strep and an ear infection and I didn't know it because he never cried or acted like anything was wrong. So, we went to the ER and my parents met us up there and the doctor took X-rays of Noah's leg - and they came back fine. He thought we needed to rule out a bloodclot and sent us to Children's Hospital in Dallas............. by ambulance!! Apparantely, there's some technical thing that if are recommending a transfer from one hospital to another for further treatment you can't release them and let them travel on their own. Or something like that. Anyway, Noah had his first (and hopefully last!) ambulance ride. It was a bit embarrassing because there was absolutely no reason I couldn't just drive him, but he seemed to really enjoy it and he fell alseep halway to Dallas. The picture above is of him in the ambulance. (No, I didn't get a picture of the cute EMT driver). :-)

So, we get to the ER at Children's and they take us straight in. The Ortho Doctor comes in and says Noah needs to be sedated to have fluid drawn from his knee. And then they come in and put an IV in and then give him a popsicle for being a good boy. The problem is that we all forgot that you have to go SIX hours without food or water before you can be sedated. It was 11:30 pm by this time. So, they said we had to stay the night and he'd have his sedation at 5:30 in the morning. Well, 5:30 turned into 9:30 on Easter morning and he finally got sedated and the fluid draw came back fine. Back to the drawing board.

At this point, they scheduled an MRI of his leg and also of his brain (to see if it could be neurological) - but they don't do them on weekends. So, we got admitted to the hospital and waited around until Monday morning for the MRI. They ended up doing only the leg MRI b/c they couldn't keep him under sedation long enough to do the brain. It ended up showing that Noah had inflammation of the muscle. Well, around this same time, some abcesses popped up on the back of his leg and they lanced own of them (oh.my.gosh. I about passed out. It was like Mt. Vesuvius erupting. It was beyond gross. It was very fascinating, but sooooo nasty. Shudder). Anyway, they cultured it and it came back as MRSA Staph. Brilliant. Leave it to Noah to have a staph infection that is resistant to most antibiotics....

Okay, to be continued. Noah's teacher is on her way and I need to get Noah's medicals ready. Will write more later....

Noah's Mom

Friday, April 06, 2007

Pictures (and a bit of a clarification)




Finally! I'm posting some pictures. Two of them were taken at the zoo (where we practically live) and one was at the library's Easter egg hunt from earlier this week. You can tell that Noah's in his "Shirt Chewing" phase. It comes and goes... and makes us grateful for garage sales. My mom bought him some new shirts for his birthday last October and they are ALL chewed up. Eeewww. We think he's detoxing when he does it, as one urine test confirmed elevated metals during a huge chewing phase. But we can't afford to run the tests all the time, so we're viewing it as a good thing and taking it in stride.


We got our Listening Program today. Yea!!! I am so excited. I can't wait. I really hope this helps improve Noah's receptive understanding and maybe, just maybe, we'll be able to get some words out of him. In preparation, we've been playing classical music in his room and he really seems to like it. So, you can imagine how happy I was when I found the BabyRock CD's at our local Walmart. I was able to buy U2 and Pink Floyd CD's, which I thought I could play in the car and it wouldn't drive me crazy. W.R.O.N.G. I guess I didn't quite understand the whole "baby rock lullaby" part b/c they are all played with the xylophone. Just imagine Pink Floyd being played with a xylophone. A tad bit clangy for my taste. So those CD's are being wrapped up and shipped to England where a friend of ours just had a baby boy. :-)


We also checked out our library's copy of the Cat in the Hat book on tape and we've been playing that in Noah's room. And we're also going to make a CD of us singing Noah's favorite songs and reading his favorite books and play that for him. Hopefully, he'll really like it. The hardest part of all is getting him to wear the headphones for The Listening Program, so we're really hoping if we play some of his favorite CD's, he'll get used to it over time. We're shooting for a 4-6 week timeframe on adjusting to the headphones and then we'll start the program as soon as school's out.


Speaking of school.... the person who left the comment on my other post will be happy to know that Noah is going to school next year. We are still undecided about sending him for a full day or a 1/2 day, but we were told that he can remain with his PPCD teacher next year, which is amazing. He was meant to transfer to a whole new school with a new teacher and new surroundings and we didn't feel that would benefit him - especially as he's really bonded with his current teacher. So, we talked to the school district and they took everything into consideration and he gets to stay one more year in PPCD. Actually, he'll be considered as Kindergarten, but will be in the Special Ed preschool class and will have an aide who takes him to lunch, music, and PE with the Kindergarten class.


You know, I want to emphasize that we are not against school. However, this is Noah's third year in school and he still hasn't mastered 99% of his IEP goals. We are talking about a severely, severely delayed child here. If we decide to homeschool, it's so that we can provide him with the type of education that he's not getting in the school district. Texas is one of the worst states for autism services in the entire U.S. Most autism experts believe that ABA is the best educational training that a child with autism can have. It is not provided in Texas. Many states do offer ABA in schools, but not here. They also don't do Floortime, RDI, Son-Rise, NACD or other therapies that have been proven beneficial. So these therapies have to be provided by the parents because they are not being provided by the schools - despite what the law says. And, honestly, you can't blame the schools b/c they are overworked, underpaid. The classrooms are filled to capacity. It's not their fault. But someone has to do it - and that's what we'll be doing if we decide to homeschool Noah for 1/2 a day.


Also, I understand that there is some concern about Eli and if he's being left out in all of this. Please let me put any worries to rest. Anyone who knows us knows that Eli is a highly active child who demands every second of our attention. In fact, we have to actively make sure that we give Noah the attention he needs b/c Eli is constantly demanding ours... and Noah is quite happy to go into his closet or crawl under his bed and play on his own. I know I don't mention Eli a lot in this blog b/c this blog is about Noah and our efforts to help him recover from autism.... but there's a lot that goes on that doesn't get written about and I can assure you that Eli is receiving tons of attention. In the last two days, Eli's gone on two Easter egg hunts, story time at the library, spent a day going to garage sales, dyed and decorated Easter eggs, helped plant an herb garden, had "school" at the kitchen table where he works on a preschool workbook, gone on a scavenger hunt, helped recycle vegetables in our compost, made special bird feeders for the wild birds in our yard, made crafts out of empty egg cartons and gone on two nature walks. This doesn't include coloring and swinging and jumping on the trampoline and endless hours playing, "Run, Nemo! The dinosaur is going to eat you!".


Trust me, he's fine.


Hope you all have a great Easter weekend!


Noah's Mom

Oprah

Did anyone watch Oprah yesterday? Oh my gosh, it was amazing. For the first time ever, she did an episode on autism. I cried like a baby. It just really hit home, you know? To hear from families whose children regressed and all they're going through.... and to see that video of little Christian at 2 years and how well he was talking and how social and then to see him now (you can view him on Noah's website in the Autism Speaks video). It just broke my heart.

1 in 150 kids.

Can you believe it? They said autism is now more prevalent than breast cancer or AIDS. It's an epidemic. It truly is and I'm so glad that Oprah aired that b/c maybe more people will get an understanding of what's it like to be a family afflicted with autism. And, you know, it doesn't just affect the immediate family. It affects grandparents and aunts and uncles and cousins. It affects friendships, careers - every aspect of your life.

If you get a chance to watch it online, please do so. It's a real eye-opener.

Noah's Mom