New Autism Numbers 1 in 68

This news is heartbreaking and enlightening BECAUSE there is still nothing being done and the general public needs to know this. Autism is the fastest growing disability there is, across the board there is a lack of services for these children they are getting diagnosed faster than individuals can get a degree to work with them.

Autism changed our life FOREVER nothing is ever gonna be as it should be.  Looking at my beautiful baby boy when he was born NEVER did I think for 1 minute there was anything wrong with him.....and that spilled over as he aged I was the REASON Noah was not diagnosed early on and it is guilt that I live with EVERYDAY.   With the increase of 29% in two years that in itself is frightening!! I hate it when people ask me what do I think causes autism, if you are an autism parent you have been asked.  This is strictly my opinion only. I think autism comes from the vaccines AND the environment AND our faulty genes we pass to our kids due to the environment.  This is NOT the world that God created for us WE (human race) have destroyed that planet and now we are paying the price.

I posted this to Facebook earlier:
I am in a pessimistic frame of mind right now after the release of the new autism numbers from the CDC I have given it some thought, so here is what I think.  Anyone that knows me knows I was the biggest advocate for Light it up Blue campaign there is but after 4 years NOTHING has changed!!!  SO whether we Light it up Blue or whatever color our community is arguing about does it matter I mean really.  My porch light is blue year around do I think it made a difference I DOUBT IT!!  With 1 in 68 kids being diagnosed with autism the only ones who seem to care are those directly affected by it.  So those of you that are not affected GUESS WHAT you will be with autism prevalence increasing 29% in two years eventually everyone in this country will be touched by autism in some way.  Maybe then that will foster acceptance and understanding along with support for those individuals and their families!!

I'm Back.....to Blogging!

WOW I have not written in a while, things went from WILD to WILDER in our world in May when the STX209 study was cancelled, our miracle pill was GONE!  We have been through a lot since that day in Mid-May, BUT we are now on another regimen of meds and it seems to be working, for now anyway.

We are still home schooling him & his sister this year, I have 2 more semesters (if all goes well) before I graduate with my Psychology degree YIPEE!!!   I am gonna do my best to post at least weekly to recap the craziness for you all!!

Noah & I were working on time the other day and the clocks hands were both on 12 so the answer should have been 12:00  his response was 00:00  LOL!!  I just love there is NEVER a dull moment in our lives!  Today he is "pretending" the thing that measures the electricity we are using (don't know the name of that) is his Time Machine!  Alrighty then!!

Have a great day & weekend!!

Noah's Urine Sample...He Peed in WHAT??

Yesterday we are at Vanderbilt for Noah's appointment, so we get to the hospital and get up to the right floor, we are getting settled and Noah needs to use the restroom. So he goes into the bathroom. So I waited for a minute and decided maybe I should go in there and see what going on.

I walk into the bathroom and Noah is peeing in the lid of an aerosol can. OMG he says, "here give this to them" I said, "no and poured it into the toilet and said they will get you a cup if they need your pee." Noah responds, "go get the cup". I said, "they will give us a cup if you need to do that."

So I go to throw away the lid that had been peed in he screams, "NO!" I stop "What's wrong??" He grabs it from me and says, "don't throw it away" and puts it back on the aerosol can that it came off of! I just left it there. LOL never a dull moment!

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 Elvis.com. 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!!!












                                   
                         

Official "Graceland Lighting it up Blue" Announcement

Autism Speaks Blog Post Graceland

Graceland Goes Blue!!!  Autism Speaks is sending two individuals from New York on April 4, 2012 to cover the story!!  How exciting!!

This is a picture from the announcement, I will take pictures the evening of April 2nd and post!!!

Making the Light up Puzzle Piece

I used a foam board from the Dollar Tree and cut out the puzzle piece. I used spray adhesive Elmaer's spray on glue and put blue and silver glitter on it. I bought 100 "fairy" lights on eBay (blue). Then poked holes in puzzle piece about 1 1/2 inches apart and put the lights in. I taped the excess wiring down on back.  Good Luck!!

My Puzzle Piece for Light It Up Blue!!!!!

Our Clinical Trial is Coming to a Close

Our participation in the clinical trial for STX-209 is almost complete. Noah just took his last dose of medicine & we go back on Monday for the last visit in the trial. We get the option of putting hi on the medicine THE OPTION?? It's a requirement (for me) there is not one doubt in my mind that we were on the medicine and not the placebo. Everything changed for the better communication appetite, cognitive skills, interacting with the environment, age appropriate toys, social skills improved, ability to educate him & retention of what we had covered. Are there still areas for improvement OF COURSE but as far as I am concerned I think WE ALL have areas of improvement don't we?

I hope we get to continue with the same staff members on our follow up visits. They are incredible we went from visit 1 with a TOTAL meltdown after the blood draw. I mean laying in the floor kicking and screaming you know the kind. Now when he has blood drawn he watches and says "ow" and it's over. He loves going to Vanderbilt we always get pizza for him from the Pizza Hut downstairs. He loves his own little pizza. Of course we have to keep the box, he is such a little hoarder we walk through the parking garage and he is picking up pieces of paper and shoving them in my purse.

When we started this part of our journey I had no idea where it would end up God works in mysterious ways, I was at a point where we didn't know where to turn. We were on waiting list all over the city but his behaviors were escalating. I am talking biting, hitting, kicking, stomping on me If he knocked me down. This was constant, I had considered anti psychotic drugs but the side effects concerned me. I got the email from Vanderbilt about the trial I immediately called and the next week we were there. God has truly blessed us and once again pointed us in the right direction to continue to help Noah and our family through our journey with autism.

Age Appropriate Toys

It's really amazing but Noah has come SO far the past few months, he is playing with toys that are appropriate for his age, he is into Lego Ninjagos, expensive (their Lego) & tiny.  But worth every penny to see him playing with them like your suppose to.  I am so hopeful of his development it has been coming quickly, more so than in the past.  He & Savannah are playing together more and not quite as rough as they used to.  They have watched a couple movies together this week.  Noah has been much more explosive and prone to meltdowns at the drop of a hat.  We knew this would happen we are in our final weeks of the clinical trail and he is being weened off the medication. IT SUCKS!!  There is hope...we go back on 3-26 and get back on the medicine YEAH!!

His Cognitive Development

I am truly amazed at Noah's progression of his cognitive development, we are withdrawing from the medicine form the clinical trial right now.  We were outside playing the other day and two of our dogs CP & Astro were playing, they are really rambunctious dogs, Noah looked at me and said CP & Astro are brothers right??  and they are Comet our other dog is their "mom".  Then a couple of days later he heard the name Paul on TV and he said your brothers name is Paul.  Now we do not see my sister or brother often at all, they live in North Carolina, Noah has not seen them in several years.

Things have just started to "click" in that fascinating brain of his, its time like this when I have SO much hope, we just have to keep on working everyday to continue this awesome progress!!!

Re-Post of What Are M-E-L-T-D-O-W-N-S

M-E-L-T-D-O-W-N-S 

* Massive

* Exasperated

* Loud

* Tiresome

* Destructive

* Oversensitive

* Worn out

* Noisy

* Spontaneous 


 Cynthia

Facebook Page

Here is the link to the WiLd WoRld oF AuTism Facebook Page!!
WiLd-WoRld-oF-AuTism on Facebook

Check it out!!!

Hasn't been a week yet...

It's already a nightmare!!!  We are at the point in the clinical trial where we are "coming off" the medicine.  Hubby is still not convinced that he wasn't on the placebo.  After the 30 minute meltdown at dinner because of seating issues.  We were playing musical chairs at dinner.  He is having sleep issues again, he got up at 5:30 am this morning AHHH.  That's suppose to be my "quiet time" well not today.  He has been difficult all morning, I wonder how he feels, he can't really tell me how he feels.  I am just counting the days until March 22, 2012 that's when we go back to Vanderbilt and we can "for sure" get on the medicine.  It helped him SO much in alot of different areas communication, behavior, interactions with others, eating new foods, reading I know that when we get on the medicine he is going to continue to excel.

What are M-E-L-T-D-O-W-N-S???

M E L T D O W N S 

* Massive

* Exasperated

* Loud

* Tiresome

* Destructive

* Oversensitive

* Worn out

* Noisy

* Spontaneous 


 Cynthia

The Fun has Already Started & Proud Moment

Well we went to Vanderbilt and it's time to come off the medicine OMG he is already starting some of the old behaviors already. After he got up this morning it was about 5 minutes later I hear him crying I get back upstairs to see what's wrong and he screams, hits me and says my DS turned off. Then he started crying again because I didn't understand what he was trying to tell me he got REALLY upset and started screaming at me. I guess this is the way it is going to be the next month this SUCKS! But knowing that after this month we can get on the medicine will hopefully help me get through it.

He has been a WILD CHILD today, surely this isn't what  to expect for the next month.  A have been like a crazy person today too, may be that's what wrong he is sensing that I am out of sync today.   Other times he is the sweetest thing, come to me and tells me how much he loves me!!!

He has started to "lie" I can't believe it,(what a proud moment) he doesn't want me to throw anything away, so he got some paper plates out of the trash.  I started to close it and noticed the plates were missing, i asked Noah if he has them, "No No I don't have them I didn't get them out of the trash."  I told him what he was doing was lying and he looked puzzled, so I said you have to tell Mommy what you did that's called the truth.  So he went and go them for me to throw away.  I hope we don't end up on that TV show Hoarders LOL!!!!!

Headed to Vanderbilt...

Dad is on his way home from work shortly and we are off to Vanderbilt!!  Tomorrow is the appointment we start to come off the medicine AHHHH!!!!  Of course we don't know if we are on the medicine, haha we know like I have said before too many POSITIVE changes not to be!!!  This month will be coming off, when we return next month, I think we find out if we were on the medicine and we get to continue on or be put on the medicine.  So the next four weeks will be definitely be the WILD WORLD OF AUTISM!!!  I need lots of prayers and happy thoughts!!!  And we are off  hope the rain stay away for our journey!!

He said what??

At the dinner table last night, Savannah & Noah were "talking"  about different colors, so Savannah asked Noah what's your favorite color??  Noah said. "Purple" (which we already knew) She then asked, "What's your second favorite color?"  (I wasn't sure he understood what that meant)  He thought for a second and then said, "Green."   WOW!

I had to prompt him but he asked, "What's your favorite color?"  Savannah said. "Blue."  So I thought great job, then Noah blurted out, "What's your second favorite color?" AWESOME, no prompting an appropriate response no help!!  I was SO PROUD of him & Savannah!!

I just feel that all success we have been experiencing lately is because of the "medicine" that we are on in the clinical trial.  We go back this week and we come off the medicine gradually over the next month.  I don't really know what to expect.   I pray the behaviors we were experiencing BEFORE do not come back full force!!  Praying daily about this!!

Roses for Autism

Here is a brief description of what they do, grow, cut, package ALL DONE by individuals with Autism!!!

 

 

Today the Roses for Autism Program is making Pinchbeck’s prized roses available to the community once again. The only difference in the roses offered today is that they are grown, cut and packaged in an integrated community with individuals on the autism spectrum.

We have 16 varieties of full blooming beautiful fragrant roses, three varieties of lilies and multiple colors of Gerbera Daisies…all grown locally here in Connecticut, year round in our heated greenhouses.

 

Link to the website Roses for Autism

 

Link to the Facebook Page Roses for Autism

 

Happy Valentines Day!!

A Moment I wanted to Last Forever

In my case as an autism mom I don't have many moments that I want to "last forever" unless it's the fact that he is sleeping!!  Had one yesterday WOO HOO!!  Noah & I went to the zoo yesterday, it was free afternoon at the Memphis zoo and it was packed, the weather has been unseasonably warm here.  So we go look at animals we went into the Creatures of the Night, I didn't think we were ever going to leave....you know how the get obsessed with things, well it was BATS, yes flying rodents GROSS, we watched those bats for at LEAST 30 minutes Noah was fascinated with them.

So the zoo got new playground equipment, YEAH!!  Noah wanted to go to the crowded playground so we did.  He made a friend, did you get that HE MADE A FRIEND!!!   Noah was just running and jumping, I am standing there on "pins & needles" just waiting to have to explain that he has autism to another parent that is usually giving us the eye in disapprovement, you know the parents I'm talking about.  I didn't have to do that yesterday.  A boy named Levi befriended Noah, and it was perfect.  That little boy didn't notice that there was something "wrong" or he just didn't care either way Noah had such a GREAT time, Levi had a younger sister and they played tag and chase and follow the leader.  I sat down on a bench and began to tear up; for a few moments in time it was like he was a "typical" child.  I never wanted to leave yesterday I wanted to preserve this moment for as long as I could.  It was beautiful=)

So far so good....

Well we, Noah & Mom, went to the store for only a few things, we have had a MAJOR role change in our home the past couple of months; dad used to be a stay at home dad until mom's fibromyalgia left her unable to work a couple of years ago.  Dad had a job then lost it when the economy took the downward, dad did all the shopping and cooking, now dad has a job for about a month now and mom is having to do some of this stuff and she is not used to it (Especially cooking) 

We have speech in a little while and then its off to the Memphis Zoo for a little while (hope it doesn't start to rain).  With dad working we only have one car, so we try to just keep the car one day a week for fuel conservation purposes!!!  It should be a full day for us.

Update on the Vanderbilt visit, we are still on the "placebo/medicine" until our next visit in Feb. then it's the coming off period.  YEAH we are on it for another month (too many GREAT changes not be on the medicine)  It is really difficult to try to make any plans for the next couple of months because we don't know how Noah is going to be, will the old behaviors come back (aggression, spitting, hitting, biting etc.)  There is a Autism Works Conference in St Louis in March I want to attend but will be unable too, since we committed to the clinical trial, we are not going to try to do anything else right now.

Noah was PERFECT at his visit they had to do a blood draw he didn't even flinch but he did tell them, "Hey your stealing my blood"  We all died laughing!!!  We ate breakfast at the hotel restaurant again and he was great.  He ate EVERYTHING (like the Alaskan Bullworm in Spongebob)  4 sausage patties, bowl of cereal, 6 pieces of bacon, biscuit with jelly I had to quit feeding him, I thought he might explode!!  All is well for now, how quickly things change though....

Speech Therapy and Autism Compliments of Always Unique Totally Intelligent Sometimes Mysterious (On Facebook)

Always Unique Totally Intelligent Sometimes Mysterious Link to Facebook Page

Benefits of Speech Therapy for Autism

Autism may be linked with a wide range of traits. These include:

Repetitive activities

Extreme resistance to changes in daily routines

Unusual responses to things such as touch

People with autism may have major problems with both speech and nonverbal communication. They may also find it very hard to interact socially. For these reasons, speech therapy is a central part of treatment for autism. Speech therapy can address a wide range of communication problems for people with autism.

Each child with an autism spectrum disorder will have his or her own individual pattern of behavior. Sometimes, a child's development is delayed from birth. Other children with autism develop normally before suddenly losing social or language skills. In some children, a loss of language is the impairment. In others, unusual behaviors (like spending hours lining up toys) predominate. Parents are usually the first to notice something is wrong. Symptoms of autism include: Extreme difficulty...

What are the common speech and communication problems with autism?

Autism can affect speech, language development, and social communication in many ways.

Speech problems. A person with autism may:

Not talk at all

Utter grunts, cries, shrieks, or throaty, harsh sounds

Hum or talk in a musical way

Babble with word-like sounds

Use foreign-sounding "words" or robotic-like speech

Parrot or often repeat what another person says (called echolalia)

Use the right phrases and sentences, but with an unexpressive tone of voice

About one out of three people with autism has trouble producing speech sounds to effectively communicate with others. Their language is simply too hard to understand.

Communication problems. A person with autism may have one or more of these communication challenges:

Trouble with conversational skills, which includes eye contact and gestures

Trouble understanding the meaning of words outside the context where they were learned

Memorization of things heard without knowing what's been said

Reliance on echolalia as the main way to communicate

Little understanding of the meaning of words or symbols

Lack of creative language

Because of these challenges, a child with autism must do more than learn how to speak. The child also has to learn how to use language to communicate. This includes knowing how to hold a conversation. It also includes tuning into both verbal and nonverbal cues -- such as facial expressions, tone of voice, and body language -- from other people.

What role does speech therapy play in the treatment of autism?

Speech-language pathologists are therapists who specialize in treating language problems and speech disorders. They are a key part of the autism treatment team.

With early screening and detection of people at risk, speech therapists often lead the way in helping with the diagnosis of autism and in making referrals to other specialists.

Once autism is diagnosed, speech therapists assess the best ways to improve communication and enhance a person's quality of life. Throughout therapy, the speech-language pathologist also works closely with the family, school, and other professionals. If someone with autism is nonverbal or has major trouble with speech, the speech therapist may introduce alternatives to speech.

Speech therapy techniques might include:

Electronic "talkers"

Signing or typing

Using picture boards with words

Using sounds to which a person is over- or under-sensitive to expand and compress speech sounds

Improving articulation of speech by massaging or exercising lips or facial muscles
Having individuals sing songs composed to match the rhythm, stress, and flow of sentences

Some of these techniques are supported more by research than others. Be sure to discuss them thoroughly with the speech-language pathologist and pediatrician.

What are the benefits of speech therapy for autism?

Speech therapy can improve overall communication. This makes it possible for people with autism to improve their ability to form relationships and function in day-to-day life.

Specific goals of speech therapy include helping the individual with autism to:

Articulate words well

Communicate both verbally and nonverbally

Comprehend verbal and nonverbal communication, understanding others' intentions in a range of settings

Initiate communication without prompting from others

Know the appropriate time and place to communicate something, for example, when to say "good morning"

Develop conversational skills

Exchange ideas

Communicate in ways to develop relationships

Enjoy communicating, playing, and interacting with peers

Learn self-regulation

When is the best time to start speech therapy for autism?

The earlier, the better. Autism is usually evident before age 3. It is very important to start speech therapy as early as possible, when it can have the greatest impact. Intensive, individualized treatment can help lessen the disabling isolation that may result from this social communication disability.

With early identification and intervention, two out of three preschoolers with autism improve communication skills and their grasp of spoken language. Research shows those who improve the most are often those who receive the most speech therapy.