hmmm...I thought everybody had heard

apparently not, well Have you heard?

Oh well o bird bird bird. bird is the word

well bird bird bird, bird is the word

Don't you know about the bird,

everyone knows that the bird is the word!!!!!

I couldn't resist re-enacting a family guy scene that also includes

one of my kids favorite songs by the Ramones

Well the thing is;{say this next part like Oprah would}

It's Autism Awareness Month!!! {pause for applause here}

{Go on clap}

There are all sorts of things going on and things to get involved in even in lil ol Cedar City.

I chose to light it up BLUE and BLUE my house Friday night and it's staying all month long.

I also blue my lamp in my room, now I can't get rid of Kobe.

Since he's sick and sleeping in my room he has free range to come in and out as he pleases. So last night at about 3am he decided to take a bath. he filled the tub, took of his jammies, and his diaper. He soaked in the tub till he felt rejuvenated i guess, cause when I woke up this morning he was laying next to me completely naked. That is not how I left him and the bathroom had been vandalized and the vandals left the agua in the tub.

Some sites to find out more local info info are:

Southern Utah Autism

Autism Council of Utah

And for nationwide here are some

http://www.autismspeaks.org/

http://www.lightitupblue.org/

http://www.hollyrod.org/

Thanks for caring enough about autism just by reading this post, If you go further than that, I will make out with you ;)

Weekend Update With Kobe and Talia

Wow it's been a while, a lot has happened in Kobe's world of Autism.

We are now a single parent family, which is hard on therapy(time wise). I feel like a terrible mother for not having more time to spend one on one with Kobe doing his ABA and PRT therapies with him. I have a great family who helps me immensely, however when the other kids want me, what do you do?

I'm the only one in the house who knows how to do his therapies. I hope that soon we will have a therapist come to the house and help.

I know that we were getting a lot of hours of therapy time in AZ, plus the diets, and SARRC was a lot closer. I had zero time for myself. I know a lot of moms say that, but I really didn't. I had 3 kids in 3 years(not planned), the oldest has Autism(also not planned). My husband was in grad school and worked full time (plus had his social life, and girls on the side)(really not planned).

I was alone, not alone alone. I had my kids, and other than the therapists, I had nobody. All Kobe's success's and non success's fell on to me. I could only do so much and be so many places. I had almost no friends there, I didn't have time for them. I didn't have any sort of a support system. somewhere I lost who I was, I stopped going to church. it was too hard by myself. I was unhappy with everyone around me and mean and angry if everything didn't go as planned. I needed control over something.I decided it would be food. I only bought foods that were organic, all gluten/casein free, also no artificial colors or flavors or preservatives. No high fructose corn syrup, no corn, no carbs and no/low sugars. Everything had to be natural and fresh. My kids are picky eaters, wouldn't eat it. I would fight with them every single meal! It was exhausting, to say the least.

I hope someday I have it all. The wonderful support system I have here in Cedar, and the awesome therapists who work so hard with Kobe like we had in AZ.

Since May, when I finally left Jed, I have slacked off as far as Autism goes. I finally got myself to a place that I am now officially 100% happy. I hope now I can move on and get Kobe the help he needs. So far he has been doing great at preschool. He loves it so much. He has also learned to follow a simple task, and that is "throw away in the trash" You might think its an easy one to learn or teach, but you are mistaken. To say that he loves or oranges would be a bit of an understatement govnah! He peels oranges and throws them wherever he feels like it. I have to follow him around the house cleaning up. I finally got fed up and decided he needed to learn to peel them over the garbage. He has finally mastered it! WHOO HOO!

We are still in the drug study and were going to Phx once every month, but now we only have to go once every 3 months. I was going to ask to transfer to a place closer, but I love Dr. Melmed, Nurse Janet, Sharmin and Sarah so much! They have helped so so much with more than just the drug trial. I wish they would all just move to Cedar, but then I wouldn't have a reason to get out of town and into the city as often. I love Cedar so much, but sometimes this place seems so small

Almost Finished

Kobe does so much better when we are Utah. I don't know if it's because of the altitude change and the thinner air, or the better oxygen from all the trees, or if it's the less toxins in the air. Maybe he just likes being around a lot of people. I think it's a combo of all of these things. A lot of parents of autistic kids say they notice a change when they go to the mtns. The movie The Horse Boy is that sort of thing. They took their son to Mongolia for a Shaman healing trek, they think it was the Shaman healing, I think it was the climate change. I wish we could move back. We would but the other services aren't even close to being as good there as they are in AZ. Especially in So. Utah. we would have to pay out of pocket for pretty much EVERYTHING! Last year AZ passed a law that mandated insurance companies to pay for autism services. Unfortunately it doesn't cover all the cost, but the state picks up the rest if you qualify. Luckily they don't go off of income, they go from how severe the child is. We only have a few weeks left on this phase of the study drug. Then we move on to phase 2 which is we know he will be getting the drug. We are not sure if he has the drug right now or not, the only difference we have noticed is that he goes #2 a lot more now. Before he went like once or twice a week. and he cried and cried from the pain. Now he goes almost everyday and doesn't cry at all. He does take the drug in applesauce 3 times a day. Sometimes we use yogurt and in his oatmeal at breakfast, but mostly applesauce. We don't know if its all the fruit or not. Before he ate a lot of fruit and still does he loves apple's grapes, bananas and oranges. He has been on a low sugar diet and doesn't eat candy or cookies or refined or high fructose sugars hardly ever. So fruit is his dessert and treats. Maybe the boost from extra fruit has made him loosen up. I don't know but, I will at the end of the month and maybe we won't have had the drug and just need even more fruit in his diet.We'll see.

Sensory

Yesterday Kobe had OT and it was not a good day for him at all. He was over stimulated by the sunlight and smells when he was outside, and he was distracted by the doors, ceiling fans and toilets, when he was inside. He cried and cried and cried all day long. I felt so helpless to see my baby boy like that. He kept his hands over his ears all day, and screamed and cried at the drop of a hat. I was bummed because it was our Peoria day and it was supposed to be fun.We met up with Aunt Kris after therapy and had a picnic at their house and went to the park to play. Maddox loves to play with Sydney, but we couldn't stay for very long because poor Kobe was having a terrible horrible no good very bad sensory day.

WEEK 3-4

Kobe has been sick and vomiting for 5 days, so he was unable to take the study drug. We had to move his Friday appt. to Monday. He is feeling a lot better and is back on the study drug. I definitely think that he has the drug. He has been more responsive towards Jed and I. Also he has showed improvement in his skills. He opened a bottle of H2O and poured it into a cup. He spilled only a little bit of it, but he grabbed a towel and cleaned it up. then he put the cap back on the water and drank from the cup. He has NEVER done anything like that before. I am excited to see what else he improves on.

WEEK 1 & 2

Well Kobe officially started the CM-AT. It is an odorless tasteless powder that we mix into a large snack or meal. It looks like dirt, or cinnamon. He has to have it 3 times a day. I usually give it to him mixed with applesauce or yogurt. I am 90% sure that he got the drug and not the placebo. He has had a bowel movement EVERYDAY since he started which is an odd occurrence for that kid.He even went in the hot tub at the hotel over Easter weekend, and they had to close it for a few hrs,(and yes he was wearing a swim diaper.) I haven't had to do another poop test yet, not until Thursday anyways, so yay for Thursday, can't wait.

Other than the poop thing I haven't noticed any other changes in him. To be honest, I was kinda hoping for a miraculous overnight change in his behaviors, but mostly really I wanted it to be a cure for autism. I know it wasn't going to happen, but I will probably always hope for something like that to happen. I have to take all sorts of data, every time he poops I have to examine it and use a number scale of what it looks like and the consistency. pretty gross. I also have to do a food journal of EVERYTHING that he eats including medicine, It's not as easy as I thought it would be. So hopefully at our next appt. they will be able to see some progress in him.

CM-AT

Autism is just more than a developmental disorder. It also comes with all sorts of medical stuff too. It ranges from kid to kid. Some of the stuff that we deal with is major digestive issues. He goes #2 about once a week and it is ginormous and the worst smell I have ever came across. He also gets candida and has a rash on his cheeks, I notice that he "stims" a whole lot more when this is flared up. Hopefully the CM-AT will help this, and Help to clear his head. A lot of D.A.N. Dr's think that the nutrients aren't getting to these kiddo's because of digestive problems and get into the bloodstream wrong and then into the brain. Yeah I know it sounds dumb the way I put it, so just read the book "Healing and preventing Autism" by Jenny McCarthy, and DR. Stan Kratiznel. It explains it a whole lot better than I do. Pretty much if the drug works then they won't have to be on the GFCF diet.