Wednesday, April 30, 2008

I was actually asked my opinion by a Dr he wanted to know what i think really works with a child who has Autism since Mav is doing well he has changed since the first time the Dr saw him a year ago.Me ? Mandy Koeppen you want my opinion wow never been asked that one before but I had an answer.want to hear my answer? Living everyday life, teaching everyday skills, Get into the world of Autism everyone always wants to bring the child into this world and if ya really think about it is this world really normal? Try going into their world it does get you somewhere. Don't label the child Autistic refer to them as this is so and so my child with Autism you don't go around saying oh this is my cancer child instead you say this is my child who has cancer same goes with Autism I think.I think it's hard for alot of people to understand the label thing but for me He is still Mav not Autistic Mav he is Mav who has Autism, The Autism doesn't come first Mav does.Treat them real they are someone too, they are not dumb heck most are smarter then you and me,treat them like you treat your "A" typical child(I know you can't do this with everything but alot of things you can) and Love I can't express this enough love them and they will love you back they may not show it the same way you or I do most of the time it's in their own way. Can you believe the Dr agreed with me this is a man that has a sentence of this and that's after his name and me I have nothing special, I never stepped a foot into college, I have no fancy degree hanging in a frame on the wall, I am just your average (I hope average) momma that loves her child and wants to make a difference.It really made me feel good if you couldn't tell lol. The Dr also told me what a good job I am doing with Mav and how wonderful and beautiful my child is. Love that! Thanks for reading this and letting me ramble I hope I made sense.

The month has come to an end but I will still be posting on this blog so please come back and check to see what's happening with Mav, Autism, and raising awareness. I am still on a mission raising Autism Awareness one person at a time. I will make a difference for Mav!
I thank you all so much for your support! Much love Mandy Koeppen

Tuesday, April 29, 2008

The month is almost over

It's kinda sad to see the month of April end. One more day to go and this years Autism Awareness month will be over. Have you done your part to raise awareness and help solve the puzzle known as Autism? I hope you have and I want to thank you!!
THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU !!!!
Have you enjoyed this blog? Please let me know if you have I think I am going to continue with it I think one day Mav will read this and have an ahha moment wow my crazy mom loved me so much she really did do her part to make this a better world for me!(at least that is what I am hoping for).
Most of you reading this blog know that I am a scrapbooker and that I turned to scrapbooking when Mav was diagnosed my hobby released my stress and got me through some of our most difficult times. I have only scrapped one of mav's baby pictures since Autism has come into our lives,it is still too hard and emotional for me too look at his baby pictures. I think back to that time when everything was fine and there was no life with Autism he was a perfect little baby and it's too much (yes he still is perfect to me)In some ways I have had to let the child in those many baby pictures and the life I thought that child would have go. I know it's hard to understand and it is hard for me to explain it's like we lost that baby Mav but hey we have our Mav and he has Autism we live it and we love him. Anyhoo back to the scrapping here are a couple layouts(scrapbook pages) i worked on yesterday afternoon.


Monday, April 28, 2008

The dude is sick again. Has a headcold/sinus thing going on that effecting his whole system. He was home from school today.Hopefully he's back to the norm soon i hate it when he gets sick.

Sunday, April 27, 2008

A good cry

I read my blog entry from last year (you can also read it if you haven't already it is the link at the side that says "Our Story")and had a good cry thought I would share this with you all.



"He is an awesome child that I love more then words can express and I am blessed by him and his autism. You are probably thinking how can she be blessed by autism well let me tell you since Mav has been diagnosed life is now seen through a different set of eyes I don’t take the little things in life for granted anymore since those little things are what mean the most.3 of my favorite words are live, laugh, and love.Those affected by Autism will know why these are my favorite word but for those who are out there wondering why ... You need to Live- Live life to the fullest you can't dwell on the fact that your child has Autism. You need to Laugh and Smile- we do this all the time because of those little moments the smiles, the smooches,the giggles,and the Mavness. You need to Love- there is so much love in my heart for this child and the love that he gives me is amazing! I know I am missing bits and pieces of our story but this will give you the idea of what we went through to get to where we are now and make you aware of Autism. There is no known cause or cure for Autism right now so please spread the word it’s time to solve the puzzle!!"

Saturday, April 26, 2008

Wednesday, April 23, 2008

DUDE

We had a funny thing happen lastnight during our nightly outdoor adventure time. Mav decided that it would be the perfect time to try aim his "junk" (aka his peepee) and see where the stream would go. He grabbed hold for the first time and whoosh the stream hit dad's muck boots the perfect target woohooo!He stood there proud with a big ol grin on his face I wish I knew what he was thinking at that moment. I started clapping and jumping up and down yelling for daddy to come see then the 2 of us told mav how awesome he was and what a big boy he was. We were so excited wish I would of had the camera to get the memory on film.The Dude was all happy with himself too it was funny. Yes we are a bit crazy but this was a total big deal for us because Mav isn't potty trained has showed no interest he didn't even want to touch or have any one help him aim his "junk" before. I think Avery starting to potty train and seeing what a big girl she is made Mav think hmmm maybe I could try that too. We have 4 weeks left of school after that Mav will be wearin some big boys or just being happy with nature for the summer unless we are out and about and he can't have the junk hanging or in case of accidents he will have the pull up on.Even if he isn't potty trained for awhile I am still so happy that he is trying the aim action. We have gotten some pretty cool ideas on new targets to use instead of dads boots too like cheerios, changing toilet water colors, and bullseyes in a bucket. I will be taking requests for those who would like him to personally write his name on the barn or a tree nah just kidding. So excited about this new adventure and his new discovery.
Have a great night!

Mav had a good day at school we used a safety harness going to a from the car so I know he is safe it worked out good not too much of a change for him to have a prob with it.

Tuesday, April 22, 2008

My Biggest Fear

My biggest fear became a sort of reality today for me and Mav. I am scared to death of him running out of the building at school and that is what he did. Mav said his goodbyes to Mrs M and Mrs W and then Mrs M again she asked if he was gonna go outside and play today and I think the thought stuck with him because when we were going out of the class a grandma came to pick up another child I had Mav's backpack and was carrying Avery when as the granny was coming in I was left with shutting the door and that is when it happened me trying to multitask and didn't have a firm grip on Mav's hand he bolted and was on a dead run for the doors and guess what they were open yep propped open and they are not suppose to be open they are suppose to be shut and locked after 8 am when students are in the buildings. Scared to death I was on a run with A in my arms down the halls he got out the doors and to a swing I caught him but just as I got his arm he was thinking of running further. It scared the holy crap out of me so I took him back to the room and asked Mrs M to come out to talk I broke down had a mini panic attack crying couldn't catch my breath heart racing shaking the whole bit I was scared what if's kept running through my head.Thank goodness Mrs. M understands my fear we have talked about this many times she said she would talk to the principal/office to let them know and would find out who had the door propped open because the staff has been told that the doors are to be shut. mav's running has been my biggest fear everyday when i drop him off I get that yuck feeling in my tummy thinking could today be the day I get that call that something has happened God I hope not but it is a reality children with Autism are runners (most are) and since most have no sense of danger and alot of children on the spectrum are non verbal so there are no screams for help or I'm over here the worst can happen. I can remember getting an email last year asking for prayers for a family whose child with Autism wandered off and was lost I got an email a week later telling me what happened and that yes they had found the little boy but not soon enough I will never forget that family or the email. I am having some problems getting the safety issue through to the school big wigs for next years school year since Mav is changing classes I feel like I am running into a brick wall head first it's like they just don't understand since it's not their child and they don't have to live with the worries of Autism everyday.I actually called after the incident today thinking maybe there would possibly be something in place for next year since I have been asking for something since our IEP in the beginning of March well nope there isn't know what I heard "hopefully we'll have something this summer I will let you know when we do" It's almost like something really bad has to happen before something will be done.I actually felt worse after making the call I feel like crap a bad mom maybe I'm not doing this right I don't know. I just want my child to be safe that is all. I felt better after chatting with my mom and Louis they told me we'll do what we have to do and our little man will be safe and not to let anyone especially the person I talked to on the phone make me feel worse or that I'm not doing this right cause I am look at Mav. Then this became a thought in my head :I am a pain in alot of peoples butt because of the safety issues when it comes to Mav all I can tell them is get use to this hemorrhoid she ain't going nowhere because I will not let my son become an Autism wanderer/runner statistic. We are looking into more safety devices to use here at home and when we go places we are really interested in purchasing a unit that we have been researching for the last few weeks it has a tracking device with GPS in it. Hopefully we will be able to get it mid-late May my mom has offered to help us get it. Thanks for reading and letting me vent.

Good news!! Mav's Dr called tonight to let us know that Mav's blood work came back and he doesn't have Diabetes. Thank goodness that made me happy! Mav did have a good day at school today before the incident above he was chatting up a storm Mrs. M said. Today was the big rally at the capitol of Michigan for the Autism Insurance Bill I really wanted to go but after discussing it with Louis lastnight he didn't think it was a good idea to go by myself and I had everyday life here to hold down Teagan and Mav both in school and needing pick up and it's hard to get a babysitter that can do all that with the 3 monsters so I said ok. I tried to help by contacting the rep from Hastings which didn't do much good he is another that I don't think really understands Autism but hopefully the other reps and big shots up in Lansing will and the voices of Autism will be heard and the big shots will sign the bill and do something to help all those affected by Autism.
Long post thanks for reading and I promise tomorrow will be a cheery post.

PS: Mrs. M thanks for letting me cry and helping me in the hall @ school today.

Monday, April 21, 2008

6 months

As the Dude and I were on our way to Grand Rapids for his blood draw today I got to thinking about what he has had to go through in the last 6 months health wise and the tears welled up he has been through so much. A new diet, blood work for this and that, MRI, Dr visit after DR visit with this kind of Dr and that kind of DR, urine tests which is not fun he has to have a bag stuck to him since he's not potty trained, he's been put under anesthesia, fasting, finger pokes,IV's, new medicine,and X-Rays. He has had the following things ruled out Cerebral Palsy, fluid on the brain and/or spinal cord, fragile X syndrome, metabolic disorders and celiac disease.We did learn one thing that he has a deformity in his feet.We are now waiting for a test to come back on diabetes then we got a phone call last week and he will more then likely be going to have testing done to rule out nervous system damage after we meet with the Orthopedic specialist again in May.Reading all that you are probably saying pardon my french but holy shit yes (that is what I thought too). My poor little man has went through all this. He has been a trooper he crys a little but he comes out with a smile on his face.You might be saying what does all this have to do with Autism? The more I read and experience with Mav it seems that children with Autism have alot of other health issues and seem to get sick easier(just my opinion).It's so hard to watch your child go through the everyday struggles and then put this stuff on top of that it gets you to your breaking point. Hearing well Mrs. Koeppen Mavrick will need this or that done..... I think we should try this.....we're going to send you to this Dr for an opinion... It's all hard for this momma I am a young mom that never thought for a moment that I would be raising a special needs child, watching him go through what he has went through, never thought I would know what I know right now, never thought I would be experiencing the life that I am, never thought I would worry and cry so much,never thought I would watch hopes and dreams get chucked out the window because they just won't happen.Peering down at that baby on November 18th, 2003 I never thought for a minute that this would be us living a life with Autism Don't take this the wrong way I love Mavrick more then I love myself I would not change him for anything I just wish I could flip the switch and everything be fine for him.

Please don't have a pity party I am not asking for that I am just venting on here and letting you know that even though most of my posts on here have been happy cheerful ones everyday is not a happy go lucky day I mean it's life you know from your own personal life that it's not all happy.
Thanks have a great day!

Sunday, April 20, 2008

Lots of chatter this weekend. Mav was repeating and copying everyone. Good weekend!

Saturday, April 19, 2008

Friday, April 18, 2008

Momma's Birthday Present

Today I got the best Birthday present ever and I am so serious wait till you read on to see why...

Waking up this morning with all the kiddies in the bedroom Teagan on the floor, Mav leaning on the bed (first awake of course)and Avery all snugged in by me. When Mav saw me open my eyes he smiled and jumped in bed with Avery and I we started the following conversation while waiting for Teagan to get up

Me: Guess what today is Dude, Momma's Birthday
Mav: Appy Birday
Avery: Oppy Irfday
Me: Thank you!
Mav: Welcome
Me: I love you!
Mav: I Yuv OOh!

I swear right there life couldn't get any better. Having a conversation with the Dude and Avery like that has been the best gift I have been given. I can't forget the used green play doh I got from Teagan that was pretty cool too! Totally AWESOME Day! Mav has continued to sing or tell me Appy Birday all day long I LOVE IT!! A good ending to a not so great week.

Thursday, April 17, 2008

Just a reminder about Chevy

Kiddies are sick with a virus so not much happening here except sickness so I thought I would post this reminder for those who haven't done so already or to those of you that may have missed this post earlier in the month.
Click here Help Chevy Help Autism
Chevrolet and Autism Speaks Team Up to Drive Autism Awareness Spread the word: Chevrolet has teamed up with Autism Speaks to drive home the message of autism awareness. During April – Autism Awareness Month – visitors to the Autism Speaks website, can click on the “Help Chevy Help Autism” icon and take a virtual test drive of the 2008 North American Car of the Year – the all-new Chevy Malibu. Chevrolet has committed to a minimum contribution of $500,000, but every virtual test drive taken gets Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fund autism research. Those who complete the virtual test drive will receive a free 30-day online trial of XM Satellite Radio.

Wednesday, April 16, 2008

CHALLENGE

Are you reading this blog? Have you told someone else about Mav, Autism, or the Blog? Let me know either by posting a comment or emailing me at MAD4MAV As a thank you Mav will send or personally deliver you something special seriously you want what he has for you.(smiling)
Thank you so much for doing your part to raise Autism Awareness!

Happy Birthday

"Appy Birday ooh you" is what Mavrick sang to Jess yesterday. April 15th 1994 a taxday baby was born into our family Jessie Marie. Mavrick loves Jess she makes him smile, giggle, and the girl totally gets him.They have a crazy bond that no one can explain.When most teenagers would push away a child or be embarassed of him because he has Autism,he's different, the acting out, the tantrums, or the jibber talk Jess isn't, she is Proud to be Mav's cousin she tells her friends and teachers about him and how he Autism and how cool he is. It's awesome how she has embrassed the blessing of Mav. Even on the worst days when she thinks the world hates her (as most teens sometimes think) she knows that there will always be a little boy with dark brown eyes and a big smile waiting to love on her. So when he sang Happy Birthday to her she lit up I think it was one of the best gifts she got yesterday she had a grin ear to ear. mav was all about the cake yesterday when he thought no one was looking he decided to ram his spoon right in the middle for a taste we all laughed. He had chocolate everywhere but hey if he's enjoyoing then we were too.
Here is a scrapbook layout I did of Mav and Jess.

I do have the Birthday song on video and as soon as my computer at home cooperates i will upload it here for all to hear.

Monday, April 14, 2008

How cool was this Night of Too Many Stars: An Overbooked Concert for Autism Education

Mav and I made a trip to the DR's today. Mav's blood sugar was high so I was concerned took him to the DR and he now has to fast and go for another blood draw ooh what fun it should be. The Dr also confirmed that Mav has a virus and Avery has it now too. We had a very long day full of bad luck not only do we have to get blood drawn our suburban broke down leaving me and the dude stranded in Grand Rapids till Louis came to our rescue.Mav hated being in the car most of the day but so did I, I totally understand his frustration momma had it too.

Heard the ABC's song and with me today love hearing that he is so proud singing. He also loves that new Leona Lewis song "Keep Bleeding" we sing it in the car he smiles and sings too. Love it!

Sunday, April 13, 2008

The Dude is feeling better today. His tummy is rumbling lots but he's not vomiting thank goodness but he is still feverish. Laying around alot.He ate some jello and toast today his drink of choice Gatorade is coming in handy it's keeping him hydrated.We are keeping track of his blood sugar levels since the developmental specialist suggested to. His levels were low yesterday and high today. Gma(my Grandma) is a diabetic so she is giving advise on what to do and when to be concerned which we are this weekend with the numbers he has been having. it's a good thing Gma has a few different kinds of tester and gave us one so we didn't have to buy one (they are pricey). We are going to keep him home from school tomorrow and hopefully he will be up to going back on Tuesday when Teagan goes to school.
On a Awesome note even though Mav has been sick we have heard the following words :
wet,thank you, mine, please, welcome,what doin,the abc's, 123's,you ok?,sorry,boots,coat,bath
(he said these in his own way but we knew what he was saying the sound was similar to the above words)
we were so excited doing the happy dance hearing those words!
Thanks for reading.

Saturday, April 12, 2008

Sick LIttle Dude

HI sorry I didn't update the blog yesterday Mav is sick it started out with the poops on Thursday after school then yesterday he started vomiting. now has both. We were up all night long cause he was so sick and weak poor little guy.It's so hard when he gets sick because he can't tell you what is happening or what hurts and when he gets sick it really kicks his butt (he usually gets dehydrated) whether its a cold, the flu, a sinus infection or anything else it takes awhile for him to get back to himself. He looks better today and was able to hold some jello down this afternoon. He's catching up on some sleep now. Will update tomorrow on how he is doing.
Thanks till then~

Thursday, April 10, 2008


Mav had a better day today which was nice. He's repeating alot of words today. Just hanging out inside today it's gloomy and raining out. Mav and Avery had a pillow fight well maybe not a pillow fight since Avery was doing most of the pillow throwing and bashing and Mav was taking it all but he had a smile and kept giggling the whole time so he was having fun. Nothing like havin your 2 yr old sister kick your butt. He loves any attention she gives him. They are so funny together. When we arrived to pick him up at school today he had to run over and give his Baby (avery) a hug so sweet! Love this pic of the 2 of them this past fall.

Wednesday, April 9, 2008

Today I really learned just how good of a memory Mav has it's crazy the things he can remember most think because he is for the most part non verbal (only uses a few words on his own) that he just isn't there but he surely is he is a smarty and I remind people of that all the time. Anyways back to the memory today like usual on Wed we headed to my moms house my cousin and her son are staying with mom for a few days and the boy has a Game Cube I have no idea about it but sitting watching Mav play this game cube thing with my cousin was way cool he loved the thing(played a ATV and car game). Mav decided he needed a break so when he went to do his own thing my cousin put the gamer up and when Mav came out again he was looking all over for it he knew right where he left it and it wasn't there so we had a "Nice" meltdown AHHH! He eventually found it and they played it again so I had to explain how his world is pictures and how he has this photographic memory. Then we decided after dinner to take a walk well my Uncle lives next door to my mom we haven't been to his house in awhile since fall maybe anyways he hollered at Mav so of course the Dude took off running for Unc's made it up the drive, the stairs and into the house before I could get to the stairs he was on a mission so he gets inside and goes straight for the living room looks all around searching for something then it dawned on us the toys he knows there were toys in that exact spot the last time he was there and they aren't now so he throws off his coat and hat and begins searching till I told him come on time to go outside. There are plenty of adventures to be had at Unc's so Mav really likes it there and Unc treats him like his is "Big Man" not like he is a child with Autism or like he is any different then any of the other kids even though he knows you have to pay closer attention to Mav.
Today Mav didn't really have a good or bad day it just wasn't a day like it usually is he was a little "off" it seemed today. He was onery, emotional, and had quite a few meltdowns which were not fun at all they were the AHHH what is going on today kind. I think it may have something to do with the weather since it has been up and down lately and there is probably a full moon coming soon. I know it may sound crazy but the full moon and weather change can really mess that kid up kinda like PMS for a chick you can always tell when it's coming, while it's there, and when it has ended.
Smiles till tomorrow~

*I know that some teachers may be reading this so this is a note for you*
I am sorry for the run on sentences I know that they are bad and a big no no but I have to get thoughts down before I loose them so please ignore my mistakes and read on. Thanks!

Tuesday, April 8, 2008

Good day at school. Lots of chatting and smiles. Still watching This Little Robot today I think I have the theme song memorized now. Mav took a nice long nap at Mamma's today then played outside a bit.I called the orthopedic Dr back today since they called and left a messege yesterday saying the DR wants to reschedule Mav's appointment sooner then we already had because of the concerns that the Developmental Dr had about the walking, legs and feet issues Mav has been having.So we will be going back in May to see what he has to say and what is going to happen with all that.I'm trying not to think about it too much cause I get all stressed. It's so hard to see him go through what he goes through but he is such a trooper and keeps that smile which helps make it easier for me. He is just Awesome and we are lucky to share this journey with him.
till tomorrow~

Monday, April 7, 2008

Today was Mav's first day back to school since Spring Break he had a good day. Mrs.M said he was pretty chatty she is trying to get him to say "I want chips" He says "No!" Then says "chips" Slowly but surely we are getting there but hey at least he is using some words and he for sure knows the correct way to use the word NO.When I pulled up to pick him up Mrs. M had walked him outside since he was the last pickup and it is beautiful out today, when he saw me he came runnin with a smile saying "Momma, Momma, Momma" gave me a big ol hug.Love it! I missed you too buddy!

Found this very interesting. Another very important piece to solving the puzzle of Autism.
Autism Speaks Spearheads Collaborative Grant with the Allen Institute for Brain Science and Leading Autism Expert to Analyze Frontal Lobe Microstructure in Autism Research May Provide Insight into the Biological Causes of Autism
Read about it here

till tomorrow~

Sunday, April 6, 2008

Mav's Weekend Review

  • Friday: Dr appointments, Build A Bear,Dinner @ Mamma & Papa's house. Rented movies the Dude had to have a Robot movie has watched it about 20 times since we got it.
  • Saturday: Watched toons with Teagan, Avery and Dad. Took long ride to get groceries and shop a little, saw a fish hitch cover on a guys truck chased after it cause it moved was totally cool. Went to TSC with Dad when exiting the doors ran straight for the dirt bikes jumped on all by himself and pretended to be racing with sound effects and all dad was all smiles telling the story. While shopping Mav did great better then the sisters did. Got his new addiction Sour Cream and Cheddar chips mmm delish! Played outside till the bugs came out helped dad put up the trampoline and was all happy getting to do his favorite thing. Fell asleep watching a movie the fresh air wore him out.
  • Sunday: The Dude slept in till 10:55 which is crazy for him I kept having to check on him to make sure his was just sleeping and he was off in dreamland the whole time all snug as a bug in his mound of blankets. Got up and was ready to head outside again where he stayed most of the day running around, jumping on the trampoline and hanging out with Teagan. Teagan has been commenting on how much he has been saying she loves him so much it's awesome to watch them together before it was so hard for her. Watched a little more of the Robot movie today too. Had Mamma and Papa over for BBQ dinner today was fun. Took a nice little bath had some thought time in there and was ready to settle down for the night. Fell asleep early which is good since he heads back to school tomorrow morning. Hard to believe spring break is all over but at least there is only 7 weeks left of school till summer break.
  • Lots of chat this weekend with everyone even with the Dr's on Friday. Love hearing what ever he may say his big thing right now is Baybee(Baby), DVD, peezza(pizza), sorwee(sorry), I yuv oo (I love you),NO, and we are working on Please and thank you which most of the time I say with of those and he says '"welcome" which is great he is getting that those words are usually used together.He is doing really good I am so proud of him.

That's Mav's weekend in a nutshell nothing much just hangin with the fam enjoying the journey!

Saturday, April 5, 2008

Recieved this today...

I knew about this since I have been following their blog since December and shared Mav's story with them too. Here is a link to the blog to read abou thte Bills

http://autisminsurancemichigan.blogspot.com/

Join us on Tuesday, April 22nd, 2008 from 11 AM to 2 PM in Lansing, MI for a RALLY ON THE CAPITOL STEPS in support of autism insurance reform bills!
HOW CAN YOU HELP?
Spread the word! - Our goal is to have 1,000 people or MORE join us at this rally. Pass the word and bring your friends, families, teachers and therapists. We need to show our legislators that WE MEAN BUSINESS with our physical presence supporting this legislation! It is time for insurance companies to stop discriminating against people with autism NOW!
HOW CAN YOU MAKE YOUR TIME IN LANSING MORE EFFECTIVE?
Set Appointments! - Plan to visit with your local Representative and Senator while you are in Lansing and set your appointments with them today!
NOT SURE WHAT TO DO OR HOW TO GET THERE?
Know Your Stuff! - For more info - including updates on the rally, maps, what to bring and more importantly, the legislation itself, visit these three sites: www.autisminsurancemi.blogspot.com, http://michiganaction.org or visit the Autism Votes Michigan page at www.autismvotes.org/michigan.
GET READY FOR THE BIG DAY:
On Monday, April 7th at 7pm, the Judson Center will host an advocacy workshop in preparation for the rally. The theme is “Taking it to Lansing.” Parents, providers and other interested attendees will learn from the experts how one person can truly make a difference.
Materials will be available this night to make rally signs or you can bring your own. We’ll be discussing how to effectively run a rally, what message we want to convey, discuss effective follow up correspondence and phone calls and do’s and don’ts for face to face meetings with your local representative or senator and much, much more!
Joining us will be JoAnn Murphy, graduate of the Parents in Policymaking class and autism advocate; local Autism Speaks chairperson, mother and autism advocate, Ann Breznai, and Justin Harlan, an 8 year old (soon to be 9) boy who took a day off school to learn what politics was all about on Dec. 13, 2007, when he testified about the need for autism insurance coverage in front of the Health Policy Committee at the Michigan House of Representatives.
To attend, please RSVP for this FREE EVENT by calling 248-837-2047 that you will be coming to this event so that we have enough materials.
Autism Votes – It’s time for lawmakers to listen!
Shelley HendrixDirector of State Advocacy RelationsAutism Speaks

Friday, April 4, 2008

Long Day

Today Mav and I spent most of the day in Grand Rapids starting out at the Devos Children's Hospital and finishing at Build A Bear. Mav had back to back appointments with specialists today first the Behavioral specialist the Pediatric Developmental specialist for a first time visit. Both went good. If you have any questions please feel free to email anytime I am happy to share anything with you. Email Me
Now to the fun part of the day the Dude and I went to Build A Bear Workshop since they donate proceeds to Autism Speaks you can read about this on their website. Mav loved the turtle he was too cute! Mav helped stuff him and love on him. Got a few pictures but it was hard trying to keep mav going with so many people in the store and the noise wow they were busy wrong time to go mom duh but we got through it with only a couple break downs but we did it and I came out with a happy little dude carrying his new best friend a turtle name Louder Then Words or as mav calls him "Baybeee". Yep I know it should have been "than" not "then" but we are different when it comes to things we do it our way instead of the way it should be or the way everyone else does it lol just kidding I screwed up while trying to type with mav in my ear screeching "bye go bye!" but hey that we do it diff stuff sounded pretty good.Lots of fun and a long day but it was ok I was with Mav.
the Dude and Loud






Thursday, April 3, 2008

Latest Autism Statistics

  • AUTISM OCCURRENCE: One in every 150 children born in the US has autism (read CDC report). It is estimated approximately 1 million in the US have this disorder.
    U.S. FACTS:
    A new case of autism is diagnosed nearly every 20 minutes
    There are 24,000 new cases diagnosed in the U.S. per year GIRLS VS. BOYS: Autism often strikes boys more often than girls – roughly four times more common in boys. With statistics being 1 in every 150 children that makes it 1 in every 94 males.
    The economic impact of autism is more than $90 billion and expected to more than double in the next decade.
    Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
    There is no medical detection treatment, or cure for autism.
  • AUTISM COMPARED TO OTHER DISABILITIES: Autism is the fastest-growing developmental disability in the U.S. today.
  • FUNDING RESEARCH: In the late 1990s The National Institutes of Health (NIH) funded just $5 million in Autism Research. Today, the National Institutes of Health funds allocation:
    $29 billion Total NIH funding
    $5 billion Funding of relevant NIH departments: Child Health, Mental Health, Environmental Health, Neurological Disorders
    LESS THAN $100 million* Portion of the $5 billion allocation that directly or indirectly impacts autism research. *This represents 0.3% of total NIH funding.
    MUCH MORE FUNDING is needed.

  • HOW DOES FUNDING FOR AUTISM COMPARE TO OTHER CHILDHOOD DISORDERS & DISEASES?
    Leukemia 1 in 25,000 Funding: $300 million
    Muscular Dystrophy 1 in 20,000 Funding: $160 million
    Cystic Fibrosis 1 in 5,000 Funding: $75 million
    Juvenile Diabetes 1 in 500 Funding: $140 million
    Autism 1 in 150 Funding: $15 million

(Dollar amounts reflect approximate annual funds raised by major private advocacy groups.) Note: it is important to note that there is no suggestion to place an importance on one disease over another. This funding information above is only to demonstrate the disparity of funding towards autism

Info from the TACA website.

Wednesday, April 2, 2008

World Autism Day

Hung with the dude today. Mav and I headed out to see the sign that my Dad put up at his work this afternoon. I knew Dad did it but it really hit me just how impotant this was to me when we got there. He did this for Mav and so many people will be reading this sign it is really going to make a difference even though Dad didn't really think it was a big deal he was happily doing it for his little man but it is a huge deal really huge it's awesome he's awesome!Love you Dad!

Here's the Dude posing in the Mav fashion with the sign.He is too cool!

Tuesday, April 1, 2008

Hello April

Wanted to share this today I think it's pretty awesome!

Help Chevy Help Autism

Chevrolet and Autism Speaks Team Up to Drive Autism Awareness Spread the word: Chevrolet has teamed up with Autism Speaks to drive home the message of autism awareness. During April – Autism Awareness Month – visitors to the Autism Speaks website, can click on the “Help Chevy Help Autism” icon and take a virtual test drive of the 2008 North American Car of the Year – the all-new Chevy Malibu. Chevrolet has committed to a minimum contribution of $500,000, but every virtual test drive taken gets Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fund autism research. Those who complete the virtual test drive will receive a free 30-day online trial of XM Satellite Radio.

Also Autism Speaks encourages you to support its corporate partners during April including Toys"R"Us, Chevrolet, TJ Maxx, Modell's Sporting Goods, Barnes & Noble, The Bachman Company, and Build-a-Bear Workshop. Our corporate partners will help increase awareness about autism and greatly enhance the organization's fundraising efforts by hosting nationwide promotions in April.

Our family tradition is going to Build-a-Bear and ToysRUs. The Kiddies love going to BAB below is a picture of Mav and his first Bear "Pieces".Last year while donating at ToysRUs I got all emotional and shared our story with the clerk she was a very nice young lady who listened and told me she was glad to do her part to help in any way with raising Awareness she was proud to wear her Autism button. I thanked her because all it takes is one person to read that button and another person is aware. Awareness is key.



*Challenge* to anyone reading this blog tell someone or a whole lot of people about this blog or share something you know about Autism with them post that you have done so or email me and you will be entered into a prize drawing that I will hold at the end of the month.