Christmas in July

We've had a lot going on lately, but much of which we can not yet share with you.



So in the mean time I thought I'd share a few moments from Christmas 2006.


ENJOY!

Happy 4th of July!

As Kyle and I sit on the front porch this evening, swinging, watching daddy leave for Atlanta and the fireworks above, I can't help but feel very thankful for our forefathers and our military!


Thank you to them all!


We send our love and warm wishes for a safe return to all those who are away from home and your loved ones this Independence Day.


Here's to more family, friends, food, fireworks & Freedom!!!

US Congress designates July 22 as National Fragile X Awareness Day

The following is very tragic and am very sorry that this is how the public has to become aware of genetic disorders. I also found this article regarding the Benoit family murders and their dealings with Fragile X on ESPN.I do hope that people will become more aware of how serious Fragile X is on those affected by it!



PRESS RELEASE June 28, 2007

The National Fragile X Foundation shares in the sorrow surrounding the death of wrestler Chris Benoit and his wife and son. Early reports indicate that the son had fragile X syndrome, the world’s leading cause of inherited intellectual disability, and that Mr. Benoit may have been depressed over that fact. While the parents and professionals who make up the National Fragile X Foundation fully understand and appreciate the difficulties associated with raising a child with fragile X syndrome, we urge all citizens to learn more about the condition and about how, with the proper diagnosis and intervention, those boys and girls, men and women, can be active participants and contributing members of their families, schools and communities.

The U.S. Congress has designated July 22 as “National Fragile X Awareness Day.” The National Fragile X Foundation uses this opportunity to help spread awareness about the condition as well as to educate professionals about the best forms of treatment and intervention. This year, on July 20, the National Fragile X Foundation has organized a three-hour, international audio/video webcast featuring many of the nation’s leading fragile X syndrome clinicians. This free event is an excellent opportunity to learn about what can be done to provide the maximum opportunities for children affected by the syndrome.

Throughout the world, scientists, doctors, teachers, therapists and counselors are working hard to provide better forms of treatment and intervention. The National Fragile X Foundation has been organizing those professionals and disseminating information to the worldwide Fragile X community since 1984. Unfortunately, it sometimes takes a tragedy, such as that involving Chris Benoit and his family, to bring attention to so-called “rare” conditions.

To learn more about fragile X syndrome, as well as the upcoming webcast, please visit www.FragileX.org.

The National Fragile X Foundation

__________________
Deborah A. Kwan

Welcome Home......NOT!

After spending all week, in Columbia learning about how to better protect vulnerable adults (ie: bored out my...), staying in an old renovated hotel that used to have pay phones in the bathroom??, and looking forward to coming home to hugs and kisses from our monkey and Gator....all I got was rejection from Kyle (okay Gator did greet me with welcome arms...and an unclean bathroom, but at least he didn't pitch a fit like someone else did).

When I got to mama's to pick him up, Kyle had not had a nap and was ill as a hornet! Make that a whole hornet's nest. I sat in the middle of mama's kitchen floor, waiting and hoping for just a little sign that he was glad to see me..........but nothing except for screams and stomping of the feet.

Now with FXS and autism you have to be very patient.......something I have never been....and allow them to come to you. You can not force them to do anything, because it will most definitely backfire on you. So, while my heart was breaking and mama was trying to reassure me that it was because he had not had a nap and probably this was his way of expressing his being upset with me for not being there all week, I just sat there telling him I loved and missed him and let him continue his tantrum.


Today, Gator suggested that we go to Spartanburg for dinner and a movie because he had to go by the office and Verizon anyway. We decided on Red Lobster, where Kyle ate every shrimp on his plate and part of his applesauce (rare moment for him to eat a good meal), and Disney's new movie Ratatouille.

When we got to the theater, we had to hurry Kyle past the concession stands and into the restrooms before he could pitch a fit for popcorn...which is one of his most favorite foods! Of course, Gator later went back and rewarded his good behavior with a bag of the buttery goodness, which he hoarded and ate almost every kernel.


Anyway, the movie is about rat that can cook. Now this sounds very unappetizing, but of course its Disney and they always have a way of seeing the "humorous" side of the story. Kyle loves to cook and tries every chance he gets to "help" us in the kitchen. He loves to watch Paula Deen, too.....so maybe we have another "Emeril" on our hands. He may not be verbal, but he will try anything and learns very fast..........including the bad habits!


P.S. Later on last night, Kyle climbed up in my lap on the couch and hugged my tight and kissed me. Gator said that when he put his head on my shoulder he was grinning from ear to ear....so thanks for a great welcoming home........better late than never.

Missing You!

As I sit here in Columbia (at my week-long training session), I am deeply missing our monkey. Since he's not verbal, our phone conversations usually end up with some garbled words, kissing sounds, and "bye" followed by the inevitable hang up that is soon to follow.....and the whole call lasts approximately 45 seconds!





Although, I am thoroughly enjoying "a break" from the everyday routine of chasing our monkey, cleaning up the house, cooking, reminding Gator about something, and of course work, I still miss it.


All it takes is one hug or laugh from Kyle to forget my troubles....even if it is only for a second!



Good night, sweet dreams, and mommy will see you soon! I love you!





P.S. I miss you too, Gator!

Forget Toys, I've found better things to PLAY with!

Ever wonder why we bother buying our children, even special needs children, any and everything to assist with their growth, development, and overall play skills?



Oh my gosh, I'm hearing my dad in my head again saying "I told you so" and "you shouldn't be wasting your money on that"!

Somehow you just don't want them to miss any opportunity to learn something new...or have the hippest toy.






All the while hoping that you know more than your parents do because this is YOUR child and YOU know them better than THEY do...right?




How is that with all the new technology and innovation in today's modern world........



from one generation to the next..........






a cardboard box or laundry basket is the best imaginative toy to date that has the power to capture a child's creative side more than a Leap Frog toy ever could?




(with the exception of our child who must also have a side of Disney or a DVD to watch at all times!)

Happy Father's Day!

As I look back on the last 4 1/2 years, I am still in awe of the wonderful husband and father to Kyle I found in this big, crazy world.

He constantly amazes me at the attention and love he provides for Kyle amongst all the everyday chaos....sorry I don't tell you enough!!!!

He didn't even mind that I couldn't find his Father's Day card today and just said he would get it whenever I found it...which I did this evening and he'll get when he returns tomorrow from his run to Kitty Hawk, NC with another load of telephone polls.

Gator is versatile, yet nerve wrenching at the same time....if he would only finish the projects he starts!

And all the while, he always has his heart in the right place even though I tend to always disagree with the route he takes.

I know all too well how much he misses his own father, Junebug, today, who died two weeks prior to Kyle's birth, of Leukemia.

I know Junebug is proud of how good a father Gator has turned out to be and watches down with love, as do Gator's grandfathers and mine.

So on this Father's Day, we send love to those who are with us and to those who are not.

All the same, you are with us in spirit and surround us with love, and we thank you for all the things you helped us through.

Lesson Learned....for ONE of Them

Remember the fishing lesson off the front porch? Well it did pay off at the annual Jake's Fishing event where Kyle caught his first fish!

However....Gator has yet to learn his lesson and I still am not sure if either of them is or will be an adult! You see Gator bought Kyle his first tackle box, Lightening McQueen of course, and proceeded to put our digital camera in it during the fishing expedition. Now, for those who have been around Kyle know that we have our little "fits" when we don't get our way......wait that's normal, right?

Anyway, guess who decided to throw his tackle box - with the digital camera - into Foster Park Lake (really a pond, but welcome to Union)!?!?!? Yep, our Chunky Monkey! Gator did think to take the memory card out, but alas the camera is no more. Now, wouldn't the logical thing have been to keep the camera in Gator's pocket in order to keep it safe? I try, but just can't think for both of us all the time, everyday, everywhere, together or separate.

I am glad Kyle learned how to fish, and we will be having his first one mounted...........but still don't think Gator learned how to think ahead!

See the Monkey in the Tree

My mother, JoJo to Kyle (MeMa to Jay, my nephew because although I researched names for grandmothers, none suited my mother and by the time Kyle started talking I gave in to JoJo of which my brother has not forgiven me)....anyway, keeps Kyle everyday....YES GOD BLESS HER!

Before Easter, all she wanted was a picture of Kyle among her azaleas in the front yard...aren't they gorgeous?!? But instead, in return for all of the diaper changes, Disney Playhouse programs, runny noses, peas & viennas, potty training, chasing him down off of her bed (you know...10 little monkeys jumping on the bed).........he decided he would rather climb the sweet gum trees than to provide her with just a little satisfaction as having a memento of her beloved grandson among her very large, beautiful azaleas.

Didn't think it was too much to ask? BUT she didn't ask Kyle that! And this is all she got!

Oh, well...maybe next year JoJo.

For Autism's Sake.....

The following are articles from http://www.greenvilleonline.com/. Please read them and our plea below.


Autism insurance bill lands on governor's desk

Published: Friday, May 25, 2007 - 2:00 am
By Liv OsbyHEALTH WRITERlosby@greenvillenews.com
What's your view? Click here to add your comment to this story.
A bill that would require insurance coverage for children with autism passed the state House on Thursday and is on its way to the Governor's Office.
Intensive early intervention has been shown to have a remarkable impact on autistic children, helping many of them to become mainstreamed. But it's costly, often more than $50,000 a year, leaving many families unable to afford it, or going into debt to finance it.
If the bill is signed into law by the governor, insurance would pay for treatment for children up to age 16 up to a maximum of $50,000 a year beginning in July 2008.
"We could not be more thrilled and grateful," said Marcella Ridley, a Columbia mother who's been advocating for the measure. "This is landmark legislation."
Read online: http://www.greenvilleonline.com/apps/pbcs.dll/article?AID=2007705250344



Governor should support coverage for autistic children

Bill would provide needed therapy for young people up to $50,000 a year

Published: Tuesday, May 29, 2007 - 2:00 am
State lawmakers approved a bill that would require private insurance to cover treatment for autistic children. Gov. Sanford should sign the bill.
A spokesman for the governor on Friday said the bill had not yet reached Sanford for his review. In the past, however, Sanford has been reluctant to impose mandates on the insurance industry. The hope among advocates is that he will set aside his personal misgivings and approve this needed legislation.
In 2005, a similar situation arose: Sanford, despite his reservations, allowed a bill to become law that required many private health plans to provide greater coverage for serious mental illness. Sanford refused to sign the bill but neither did he veto it, and by his passive support it became law.
The current autism bill is equally worthwhile. Autism, a disease that can severely impair a young person's ability to communicate, form relationships and adapt to change, is the only neurological disorder not required to be covered by private insurance in South Carolina. The bill would require insurance to pay for treatment for children, age 16 and under, up to a maximum of $50,000 a year beginning in July 2008.

In South Carolina, about 2,000 children under 18 have autism. Advocates argue that early intensive therapy can do wonders for some autistic children. Advocates say that about half of children who get at least 40 hours of therapy a week can enter the first grade on time. Another 40 percent make considerable progress, they say.
But that therapy can cost up to $75,000 a year, putting it out of reach of many families with autistic children. Advocates say families across this state are forced to get second mortgages on their homes or face bankruptcy trying to provide the intervention their children need. Or they face the heart-wrenching experience of placing their children in group homes or institutions -- although there's often a 15-year waiting list for such institutions.
Even though therapy may be costly for insurers, it could save the state considerable sums in the future. An autistic child who receives insufficient treatment sometimes can end up being cared for in an institution at taxpayer expense. That can cost the state $4 million to $7 million for each patient.
Compassionate consideration for children suffering from autism helped persuade state lawmakers to follow the lead of at least 17 other states that require coverage. Early intervention for children also may save the state millions of dollars in the future. Gov. Sanford should sign the bill and give autistic children the opportunity to lead more productive and perhaps even more fulfilling lives.
Read online: http://www.greenvilleonline.com/apps/pbcs.dll/article?AID=2007705290336




Please help us by calling or emailing SC Governor Sanford's office and let them know you support the bill on his desk requiring private insurance companies to cover medical costs up to $50,000 per child/year with Autism. You can send to anyone and they can put in the comments section on the email on the Governor's website that they know a family in SC or know Kyle, etc. and support this bill....because this could help to set precedent in other states.

Phone number is 803-734-2100 or email at http://www.scgovernor.com/Contact.asp?sitecontentid=33

We need your help and thank you from the bottom of our hearts...............for our son Kyle!