Friday, August 24, 2012

Looking Back.....

WOW I cannot believe that I am actually at a point where I could write those words it was less than a year ago Noah's behavior had gotten so out of control I was I at my wits end.  Love that STX209!

I remember when going to the grocery store with Noah was a dreaded trip...I couldn't stand the thought of it, Walmart, Target & the mall were totally out of the question.

I remember a trip to Blockbuster video store (when we had stores) he was 6 or 7-that was during the Scooby Doo obsession he wanted a specific video.  The DVD cases were in front of the copies of the movie, well there were none behind it...he opened the case and LOST IT!  He laid in the middle of the floor and had a huge MELTDOWN.  He could not comprehend why there would be a case with no movie~and it would not have done me any good to try to explain at this point.  I was running damage control; I was down on the floor with him to ensure his safety.

There was a kid about Noah's age that was witnessing the meltdown and he started to approach us, I was glad his mom got to him before he made it too us because I am not sure of Noah's reaction to him.  BUT I didn't like they way she went about it.  She looked at me with "the face" you know the one all disapproving and smirky looking and said, "his mother will deal with him"~I wanted to "deal" with her. But at that point I was only concerned for Noah and how his recovery would be from the meltdown.  Week before last we took him to Walmart & Target on a Saturday WOO HOO.

All you moms & dads, some of you have been there~and are passing that "stage" for now.  But to those who are experiencing these issues IT WILL GET BETTER...

Monday, August 20, 2012

Autism, Fibro, Home School & Getting My Degree

Sometimes I think I have taken on too much...after Noah's diagnosis and so much conflict with the school-we decided best course of action was to home school.  I was unable to continue my career in retail management because of the Fibromyalgia, so this would work out great right.....RIGHT in the midst of all this I decided I needed to return to school to finish my degree.

With that said I did it I enrolled at Liberty University Online and I am a year away from graduating with my Psychology degree.  If you know fibro there this this thing called the "fibro fog" memory impairment as well as cognitive issues, without all the work related stress and medication I am better but school has been difficult due to the memory issues I have BUT that will not stop me.

The plan going forward kids education, my education & Foundation's for the Future that is the goal.  God laid this dream on my heart last year to create a place for adolescents & adults with autism to learn independent living skills, work related skills & family counseling & support for transition process.  The incorporating paperwork should be complete with the fee next week.  The paperwork wasn't holding me up the $600 fee was LOL.  After this comes the IRS paperwork oh for  JOY!!

I am a mom on a mission~we lack so many services just as most communities do so I decided to create my own program this is so exciting for me!!

Look out world he we come..........(to be continued)

Saturday, August 18, 2012

My Tribute to Autism Speaks (I got your back)

OK we all have opinions (you know what opinions are like?) well I have one a very STRONG one about Autism Speaks....I hear repeatedly "Autism Speaks doesn't speak for me" or "they spend all the money on huge salaries and advertising" or "Autism Speaks is making $$ off back to school products at Walmart" OMG

Well guess what if you have autism then Autism Speaks has spoken for you!  The organization has been around about 7 years and in that time frame have brought more education and awareness to this developmental disability or disorder (which ever you prefer) than ANY other organization in history so they have spoken FOR ALL WHO HAVE AUTISM whether you like it or not. And Autism Speaks has funded more research for autism.  I am pretty sure the thought process behind the back to school marketing ploy was not to make a million dollars by selling a $2 notepad but that everyone that might see that puzzle piece notepad will ask what is that for~I think that's raising awareness not money.

I am SO grateful for Autism Speaks~I was thrilled when a representative came to my community three years ago.  I volunteered that day and have been devoting my spare time to promoting Autism Speaks and what they stand, compassion, research~ever since.

I had the pleasure of meeting two individuals from the Home Office of Autism Speaks, they came to Memphis and toured Graceland with us for the Light It Up Blue ceremony at Graceland.  One of the individuals was Kerry Magro an adult with autism, he is a tremendous advocate for all who have autism.

Let's talk insurance reform for autism therapies how many states NOW have insurance coverage 32 states....THIRTY-TWO states. Autism Votes an Autism Speaks initiative was responsible for most of those 32 states.

Our lives have been transformed by a drug STX209, that is still in the clinical trial phases, our child has had SO many positive changes since we have been on the medicine and who is funding the study for this medicine AUTISM SPEAKS!

So many people want to complain about what is not getting done, the services their family members don't have, the lack of family support services, the cost of therapies, but they still find time to complain about what Autism Speaks is not doing....well at least their doing SOMETHING!  If we wait on the federal government to handle this dilemma we will be waiting A LONG TIME.

RAISE YOUR HAND IF YOU DON'T WANT TO KNOW WHAT CAUSES AUTISM??  Research costs money and to get the TOP scientist in the country you are going to have to pay them.  They don't work for free.  Another point about what they spend on advertising how can you create awareness and understanding for autism if society knows nothing about it.

Autism Speaks 2010 Form 990 (IRS)

Autism Speaks does speak for our family...if not them then who is speaking for yours???

Friday, August 17, 2012

Noah & Mom at the Zoo

We went to the Memphis Zoo this week, we got there early right when they open to avoid the crowd~we were successful. We LOVE our zoo it is incredible; this is the Teton Trek it is one of our newer exihibits it is totally cool.

It has bears, wolves and some other fascinating animals we actually caught the bears at a great time, they we in the water.

We got some GREAT picture of the bears...

 The one to the left is kicking back and enjoying the water!!

          We caught this one swimming...he would stick his face in
  the water & blowing bubbles.              

This is Noah...just chilling out!!
The zoo also has a Birds & Bees Exhibit we got there before it opened so we went in right before we left and Noah (and Mom) were amazed, we purchased a "feeding stick" it was some kinda bird food on a stick with a clothespin~the birds would perch on the stick to eat....once we got a couple of birds on it the masses came.  There were birds on our feet, Noah was LOVING it, birds landed on my shoulder and walked down my arm.  The battery ran out in the camera after the bears, I got a picture of the birds before the exhibit opened beautiful birds....

We had a totally AU-some time, the dinosaurs exhibit was gone, he was a little confused about that but it didn't seem to bother him too much.


Wednesday, August 1, 2012

Mommy...the Slacker!!

I will admit it I have been a "Therapy Slacker" this summer.  We do not get ESY services since we home school & we have Tenn Care (TN Insurance for kids) so finding IN NETWORK providers is VERY difficult. We haven't done any therapy this summer other than a few days a week at camp for kids with different abilities.  That went very well.

So I got together the couple of providers that I wanted to use and I got busy today!  I called the insurance people because it covers ABA believe it or not but finding a provider is the hard part. I contacted the Speech & OT provider that I had in mind they forwarded the paperwork via email & I had it returned with in the hour. They are going to file out of network but both speech & OT are at the same location!! I got in contact with the ABA provider, since chairing the Autism Speaks event the past 2 years has provided me with some good contacts, working together we should be APPROVED for ABA services next week.  In conjunction with the new medicine (STX209) the therapies should be a lot more effective.

SLACKER no more!  We really enjoyed the summer just spending quality time together.  It's time to get back in the game and make things happen.  I am also signing Noah up for soccer through the Special Olympics, I can't wait I think he will really enjoy it!