Monday, April 30, 2012

HOPE is Huge That's what we have!!

Well our trip last week to Vanderbilt went well, it had been 6 weeks since our last appointment. We got there late Wednesday night so it was basically melatonin, a story, then sleep, of course I can't sleep that night I hate that!  So we get up, eat breakfast, and head to the hospital. We are pulling in the garage and looking for a spot and Noah starts throwing up YES puking in the hospital garage, like that's never happened before right.... Thank goodness he rolled down his window and held out his head it was all over the car but not on him!  So I use a coke to clean off the side of the car, and we head in, he doesn't look like he feels well at all.  But we get up there and tell them what happened. They did the usual weight, height, BP, pulse and he was great. Our doctor comes in Dr S he is awesome!!  So he asks what we have been seeing well he has only been at the full dose for a few days but we are seeing some changes, behavior is improving, communication too, he talks non stop, you can understand a lot more as well. I also reported that his cognitive skills are improving, he is making connections to the world around him BIG TIME!!  He is reading billboards and street signs. He is more aware of his feelings and the feelings of others that is something that has been very difficult. This may sound weird but he gets dizzy now, he NEVER got dizzy before, he is also aware of the temperature, he went on a walk with meme the other day (that is new too she could have never done that by herself before) and he said he wanted to go home he was hot!! So Dr S tells us that we should continue to see more improvements in these areas over the next few months as it builds up in his system.  The Dr also told us that this was the first drug to help "manage" autism. It works with the GABA receptors in the brain, the name of the clinical trial drug is STX-209 it is Baclofen-R.  Baclofen is prescribed now and doctors tried it for autism but did not see the same results as baclofen-R.  He also told us to take into consideration that Noah has seen the world "his way" for so long that it will take time for that to change as well. I am SO excited about what's to come, I have not thought that way in a long time there is hope, and you guys know as the parents or family members of children with autism HOPE is huge.   The side effects if this drug are minimal, Noah has experienced some head aches, not sure if was related to medicine or just allergies.  So Dr S is getting ready to leave and Noah looks up at him and says,"you forgot to take my blood.".  Dr S said no Noah we didn't have to do that this time. How many kids (or grown-ups) remind the doctor that they forgot to get blood!! LOL. Will keep you posted on new developments. 

Sunday, April 22, 2012

20 Questions?? Wait no there are more than that....

What is a shadow? Do I have a shadow? How is a shadow made? What is a robot? Can I be a robot? What does "classic" mean? Who is "doodle-bob? Are you happy??Be happy!! Don't be mad. Are you mad, or frustrated? What's frustrated?

What does regular mean? What does weird mean?  What’s an appointment?  What is fog?  Why do we have clouds?  When I die and see God I want to come back.  When am I going to die?  Do we all die?  Do we all go to heaven?  Sherlock is in heaven right: (she is our dog that died a few years ago) Are there really bank robbers in real life??  Are snakes icky?  Can I have a snake??

What is a man? Am I a man? I think I am a young man. Am I a young man? Will I be a man? When will I be a man? I don’t want to grow up; do I have to grow up? I will give him half my sandwich; he will ask are you full? Can I eat this now?

Can I have your computer now? No Noah mommy is working right now you can play on the iPad, ok mommy. Two minutes later, mommy can I play on your computer now? No Noah not right now, ok mommy.

Noah asks, "when are we going back to Nashville?” I reply, "Next week." Noah, "are they going to steal my blood?” My reply, "No they are not going to "steal your blood!". Noah, "are they taking my blood?” I reply "yes". Noah, "are they going to give it back?” I said no. Noah replied, "Then they are stealing my blood!!"

Does your kid ask you question after question, Noah is FULL of questions, and I am not always full of answers LOL!!!

He still has not asked the hardest question yet…what is autism??  And why do I have autism?  I am still thinking about the answer to both those questions!!!

Friday, April 13, 2012

Obsessions, Compulsions (whatever you want to call it) Past & Present....

As we know from experience our kids with autism tend to get "obsessed" with different things, Noah's obsessions have ranged from standing in his head ALL THE TIME to waiting for the water to come back up in the toilet weird huh?? If he's in a hurry he just doesn't flush it takes too long LOL!!  In a public restroom it's not too cool either. BUT I would rather have stranger look at me like I am crazy rather than start a meltdown with my 9 year old.

His obsessions change right now we have the toilet, not closing ANY browsers on the computers (he will have 60 or more open), I try to explain it would be faster if he would close them.  But does he listen to me??  What do you think??  We are still on the Mario Brothers kick not quite as bad, he is starting to play with Lego Ninjago's which is age appropriate so that's great.  Question about Mario? if their the "Mario Brothers" is his name Mario Mario & Luigi Mario??  I don't get it!!!  Just a thought!

Some of our past "obsessions" include collecting empty cereal boxes, toilet paper world, every brand of tp we have had at the SAME TIME and could not use it.  When we would go to the store (he still does this) he is the ONLY kid I have ever seen that LOVES the paper products aisle, he  has to inspect them all and talk to the puppy on Cottonelle, the baby on Angel Soft & the bear on Charmin *** Bet you didn't know Cottonelle has an App for their puppy, we have it LOL***

And of course clothes, we still go through the phases of not wanting them on.  At least he wears his underwear, OH YEAH, he is totally OBSESSED with his "private"  it's like a built in toy!!  He has learned the correct term "penis"  and he runs around screaming "Penis, Penis"  so I tell him not to say it.  His response is, "Is it a bad word?" Well uhhh NO!  Noah, "why can't I say it?"  I said, "Do you hear anyone else walking around saying "penis"?"  Enough said!!  Share your kids current obsessions in our comments!!

Graceland Goes BLUE for Autism Awareness

Graceland was great, we (myself, committee members &family from 2011 walk) had a private tour of Graceland - we got a sneak peek at the new Lisa Marie exhibit. Our tour guide was marvelous, we took our time to look at everything she readily answered any questions that we had.
OMG I forgot the memory card for my camera & phone only had 20 %. BUMMER so I only have a few pictures of Graceland.
Here is a Couple of pictures of the "jungle room". Elvis trivia!!!! Did you know that he had a pet monkey, his name was Scatter. There was a monkey in every room, little ceramic monkey's, wooden monkey's!!

LOVE the green shag carpet, this was definitely a '70's house

This is a picture of the grounds, Elvis had horses and loved to ride. Did you know that Elvis sometimes road his horse to the front gates of Graceland to sign autographs for fans!!
This picture shows Elvis's Tupelo Mississippi home where he was born.

Here is a group photo they took before the tour. My two sweethearts (Dad & Noah) did not go on the tour. COULD YOU IMAGINE Noah in Elvis's house NO WAY!! They came for the " flip the switch" ceremony.

This photo is me, Kerry Magro & Christine Hart both from Autism Speaks, they were SO nice, Kerry is an adult with autism I really enjoyed their company and SO glad they came. Christine is a web designer for Autism Speaks, she made the LIUB site and app.  THANKS Christine!!
The lighting ceremony was too cool here is a picture of me, dad & Noah, he flipped the switch, I was SO glad he didn't do the on/off thing he likes LOL. My daughter Savannah said her face hurt from smiling so much for all the pictures.
the BIG switch!!
 In our company we had Miss Teen Dyersburg (Tennessee) miss Madison Butler, her sister Brittly was on the committee. Madison's platform is AUTISM!! Thanks Madison for helping raise awareness for autism.
Noah was Noah and I wouldn't have it any other way, I think the camera man could have done without him LOL. after all the picture taking, their was a huge fuzzy microphone, he could not resist.......he goes up to the microphone and screams "peanut butter jelly time" everybody lost it and started laughing. Too bad it didn't make the video on I was GREAT I think the people in front of Graceland heard him. Overall it went well here are some various pictures of the evening below!!!  Graceland is committed to Lighting it up Blue every year for Autism Awareness!!

More pics of us & the group!!

This is one of Elvis's Jumpsuits, the room that the jumpsuits were in was 20 degrees cooler than any other room.  

this wall was in the "jumpsuit" room COVERED in gold records!!!
Thanks Elvis Presley's Graceland for the wonderful experience and for LIGHTING IT UP BLUE!!!


Sunday, April 1, 2012

Happy Autism Awareness Month

Happy April, it's finally here.  Autism awareness means so much to me it's the one time a year for the community to come together and celebrate our loved ones as well as raise education & awareness for Autism Spectrum Disorder.  As a community we shouldn't quibble about our difference in opinion right now; focus on what REALLY matters AUTISM and the people that it effects.  Please help "shine a light on Autism" this April, remember it's not about us, it's about autism!!!
This is Noah he is the reason we Light it up Blue for Autism Awareness!!
He's one in a million!!!