Thursday, May 31, 2007

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 WRITER
losby@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!

Thursday, May 17, 2007

Our First Marathon

Things have been really crazy around here. I started this new post last week and am just now getting back to finishing it....sorry for the delay.


The Union Public Safety Department held its first annual Torch Run to benefit Special Olympics on Saturday, May 12th.



They began with a marathon for anyone that wanted to participate, held special events for the kids and ended with a mini-marathon for the special needs children...including an awards ceremony.






Hope you enjoy these photos of Kyle....but especially our little man as he completed his first marathon...all the while playing politician along the way!


Wednesday, May 16, 2007

Who's the child here?

As much as I love the fact that Gator wants to teach Kyle everything, some things have to be thought all the way through!!!

I ended up having to work late today due to a case regarding an adult an two children who may end up in DSS custody.
Anyway, Gator proceeded to call me several times about going to pick up Kyle, supper and lastly to say that he had emailed me these pictures. Now what do you think I was more concerned about at the time.........the safety of that adult and those two children!

The pictures are the big problem! I am so thankful that while Kyle may not yet be verbal, he is very mechanical and fast learner BUT he has a VERY GOOD MEMORY! Now, with my present job at DSS, I think of all the dangers in situations more than ever.
And what problem does learning how to fish off of our front porch cause???? Try heading to the water pond every time the front door opens. Try leaning in to get sticks or leaves out of the water pond every time the front door opens. Try trying to fish out the goldfish out of the water pond every time the front door opens. Try possibly leaning too far off the front porch trying to fish in the water pond every time the front door opens. Get the picture?!?

What shocks me even more is that when Gator called to tell my mother that Kyle was learning how to fish, is that my own mother did not think any of the above scenarios could be possible. My mother who I though I got all of the situational thinking from, thought it was cute. Let's hope that it stays just CUTE!

P.S. Mommy is very proud of you today despite the dangers that lurk around the corner of the house!

Thursday, May 10, 2007

Everyone has a "Dummy" in their life!

For those of you who know me, knows that "Dummy" is my grandmother. For those of you who don't, let me explain. I was born saying "Grandmother"....not Grandma, Granny, etc. I was Dummy's first grandchild and eventually gave her her first great-grandchild. (Please note that Dummy held Kyle before Gator did - and he knew better than to argue with her!.) Gator also had to worry more about telling Dummy than my parents that he had proposed.

Anyway, she and other Dummy (Granddaddy Butch) always took me shopping, out to eat, or just to ride wherever. I was ALWAYS at their house and they have always been a very BIG part of my life. One day, when I was little, Mama and I went out to their house to get something......don't know what.........but they were not at home and Mama sent me in with her key to their house. I left them a note and in it spelled the word dummy wrong - DUMBY! After that it became a running joke and I was able to get away with calling Grandmother something else - albeit Dummy.

And to this day, I receive very weird and sometimes wrongful looks at people who hear me cal
l her this - like at the hospital Monday when she had to be admitted for low blood pressure and dehydration. Yes, the last couple of weeks have been hectic to say the least. First, I had a bad stomach virus that left me nauseous for 10 days - and wondering if we were pregnant (because of this and a very light period, but we have taken 4 p-tests and 2 said "see leaflet" and the other 2 said "not pregnant"). The pregnancy would have opened a whole 'nother can of worms due to the higher risk of another child having Fragile X Syndrome!

Grandmother ended up getting the stomach virus and ended up in the hospital - and guess who ended up having to put her foot down and insist on following doctor's orders - yep ME! Do you know how hard it was to fuss at Dummy! However, dealing with Kyle's autism and FXS has helped me better cope with situations and I was able to keep her laughing all during her admission, tests, blood work, pokes, prods, x-rays, IV hook up, etc. I even promised her M&Ms if she pee peed and poop pooped in the potty.........you have to understand that she does not like chocolate and she was hooked up to the IV, which my mother was holding, while I was holding her very couture hospital gown! (And she will kill me - if my mother doesn't first - if she finds out about this!!!) But it's funny to Mama and me since we are trying to potty train Kyle!

But it was nice to be able to take care of her for a change - you know we all can't live to be 39 (and yes she is still 39 for those of you who know that running joke - if I want to live) Mama is 29 and I am 19. I even climbed in the bed with her to help warm her up because the sheet, 3 blankets and heat on 75 were not doing it.

She was released from the hospital today and Kyle got to ride in her lap down to the car - and everyone in between the room and the front door heard about how he was her first great-grandchild and I was her first grandchild. So, you all may not have a "bad" name to call your grandmother, but make sure you call her.......because one day I won't be able to call her, but she will ALWAYS BE MY DUMMY! And a very beautiful one at that!!!

Tuesday, May 01, 2007

Easter Pics

I wanted to get these Easter photos posted weeks ago; however, a certain Cuz of mine inadvertently downloaded all of the pics on our memory card instead of copying them! So I have been waiting on her to email them to me and I finally received them today.


Due to a migraine that I have had since Saturday night, I'll leave this post short-n-sweet with several photos. I'll do my best to do another post within the next day or so to update you on the latest doctors' appointments. Until then....enjoy!

Wednesday, April 18, 2007

Hello? Poison Control?.......

The very words I thought that I would never say....I said late Saturday afternoon! Remember me saying that we have to give Kyle Clonodine every day for a nap and every night, along with Melatonin, to go bed? Well, I had his medicine, just the Clonodine, in a daily pill box, in my center console of my car, when we were going to Georgia Easter weekend. I saw the pills earlier Saturday, but didn't put them in my purse 'cause Kyle has a tendency to ramble for the car keys and/or cell phone.....how ironic...right?

Anyway, I was standing in front of the car talking to a couple of friends of ours.....all three of us watching Kyle get in and out of my car trying to crank it and unlock the trunk. I realized that he opened the center console and remembered that Gator had left 3 Snickers bars in there and that they had probably melted by now and I did not want chocolate all over the inside of my car. I took the Snickers out and proceeded to the trash can, with my back to Kyle for a split second, and I guess he went back in to the console. (See Lee stopped me from throwing them away, saying he would make Snickers popsicles, and had my back turned for two seconds.) I got Kyle out of the car for him to tell Lee and Brian bye and Lee then proceeded to the passenger side of the car to make sure Kyle did not escape....it was then that my heart stopped! My child was foaming at the mouth! There was a flash before my eyes and I quickly realized that he could not have rabies....our dog, Hershey, and Lee's dogs, Jazz and Amos, have all had there shots and are fine, plus Kyle has not been bitten by anything.....and then it hit me like a ton of bricks.....Kyle had taken all of the Clonodine in the travel pill box!!!!! And I knew that there had to have been at least four, if not five, pills in that box!
Lee, Brian and I rushed Kyle into the house and proceeded to try to rinse his mouth out over the sink with the spray nozzle. I then called the after-hours number to our pediatrician (Dr. T we will be there on Friday and all is well, except for this little fever of 101+ that showed up today...but he's still bouncing around as normal!)...the answering service transferred me to Poison Control who then called ahead to the nearest hospital.....Wallace Thompson aka: death trap. I was not happy about any of this, but our son's life was at risk, though since he has been taking Clonodine for over a year, thought he might sleep a little longer...seriously - very concerned!

Because we had not had to go to WTH and I didn't know anyone that worked there really, I called my DSS Mama, Lynne Crocker...who I woke up and lives 10 minutes away....to ask who was there that I might know or who would take care of us. Lynne said that she and her husband Joe were on their way...and they made it to WTH right on my heals and I was only one mile away! With Lynne's connections and the fact that I too worked at DSS, we were taken very good care of and luckily the doctor in the ER was from CMC out of Charlotte, NC who now owns WTH.

They first did the initial questioning and tried to get Kyle to drink the "charcoal"...yeah right. And we tried keeping him asleep, then letting him rest, then waking him up, and then came the fun part...the IV! Now, we warned the nurses of how strong our monkey is, but they did not believe it until they attempted to put an IV in his left foot and failed twice all the while 5 adults are holding a 4 year old down who is practically zonked out! The finally got the IV in his right foot, finished hooking him up to all the monitors....heart, breathing, blood pressure, etc.....and did an EKG.

While this was happening, the nurses called Lynne over because they had a new report on an adult, so Lynne ended up working most of the night anyway while Joe sat with Gator, me and the monkey. (He also ran to the house to get Elmo....have you not met our Elmo....the poor Blind, Demented, Gingivitis Elmo.....but he is LOVED!!! and Joe thought he was Hershey's doggie chew toy....boy how wrong he way!) Anyway, Lynne later told me that the doctor asked her if I really worked at DSS and should he think that this was anything other than an accident? Of course, Lynne set him straight very fast and said No and that I was the best mama on the planet....don't know about that, but thanks for having my back! Of course, Dawn, the CPS worker on call, would have just laughed at the nurses when she found out it was me had they called. Gator just kept saying he was glad it wasn't' on his watch, because I would not have let him off the hook and he's probably right!

They finally let us go home about 1:00 am after the doctor jokingly said we may have found a cure for Kyle's insomnia..........WRONG!!!!! Kyle was up at 8:00 am! and was bouncing off the couches, running around the house and jumping on the bed while playing pirates. Now does anybody doubt that I birthed the Energy Bunny! Not even an adult blood pressure medicine overdose, that could have gone severely in the wrong direction and been very bad, could be this hyper 7 hours after leaving the hospital? Maybe I should have taken them instead....at least I would get a little rest for once! What is it like to have a toddler go to bed at a reasonable hour? I guess I may never know.

Wednesday, April 11, 2007

Genetically Speaking.....II

What are the odds? Well I no longer like that question! After hearing last Thursday that there would be a 50/50 chance of passing Fragile X to another baby and then that those odds go up another 30% if it is a boy..........the odds of us having another child may be slim to none. As much as that hurt to hear, it would hurt even more to hinder another human being. Now, don't get me wrong, I know that this is not my fault and that Kyle was a gift from God and meant to be, but we are just so unsure of the future now.

The genetics staff did take my blood and are doing DNA testing on me. The test results should be back in a couple of weeks and then
they want to test my mom, dad and grandmother. It would be very unusual for the FXS to be passed down from my dad and they want to make sure where the FXS is in our family history before making any further recommendations. Of course, now Scott and Jessica are very concerned that Little Miss "Pistol M&M" may be affected too. The genetics staff has assured me that there would be a very slim chance that she would have FXS because Scott would have had to of shown some of the characteristics of it, but we still need to wait for the other DNA tests to come back. And I pray that it Scott is not a carrier!

What are the odds that Kyle will...? "grow out of this"? be able to live independently on his own? be able to go to regular school? talk? marry? have children of his own? be able to enjoy Walt Disney World?

Wouldn't I love to be able to answer these questions! The genetics doctors would too. They can not guarantee that he will not end up in a group home one day or be able to fully live independently on his own. They hope that they are wrong, but they do not want to give us false hope. Everything depends on his attitude, therapies, agencies and assistance that he is able to receive.

We already have him in an early intervention class in school, public and private therapy (occupational and speech), Medicaid, and have the ball rolling at the Department of Disabilities and Special Needs (DDSN) and the Piedmont Autism Chapter. We have bought (or have been given) books, toys, computer software, online websites, and therapy items. I also went to my first support group meeting last night.

I guess now its up to God and Kyle to see where this goes from here. All we can do is our best and try to give him the best....and PRAY! And of course LOVE HIM WITH ALL OUR MIGHT even when he's pitching a fit!

Wednesday, April 04, 2007

Calling the Easter Bunny.....

If you need help this weekend, just call us because we have your partner in crime...........the Energizer Monkey! This one keeps going and going and going....you get the picture. And for proof, I've included just a few photos of the Monkey in action last week at the park and then at home.

Now when you look at our Monkey, do you see MENTAL RETARDATION?!? I think not, but what do you do when you read all of this bad stuff about Fragile X Syndrome and Autism? I know Cuz I'm not suppose to be reading anymore until the genetics appointment tomorrow, but I've only read a little (haha).

He's smart, responsive (non-verbally of course), understands everything you say, and has more energy than our USA Olympic Athletes combined! He is quickly picking up sign language and knows how to work the DVD players and crank my car! Yes, I alerted another police officer (one that is kin to you Mama Patti) today of the possible 4 year grand theft in our household!

Now how could a mother in her right mind (no comments from any of the peanut galleries out there) let someone call her child mentally retarded when they know they are NOT! I'm done with the guilt and ready for a fight 'cause our Monkey is not and I will not allow him to be labeled that either.........so just try and stop me. And Lord be with the doctors and brace them for Hurricane Betsy 'cause she's on the war path!

Now I know that he has to overcome and catch up on a lot of developmental issues and we are dealing with each of them, but I refuse to believe that our beautiful, little tease, full of energy, loving, smart, non-verbal child will end up in a group home. If I have anything to do with it, and I will!, he will grow out of this and be a normal, fully functioning young man in no time!
Any objections............deal with it or Hurricane Betsy!

Tuesday, April 03, 2007

Is this MY fault........

I know you have been wondering why I haven't updated Kyle's blog lately....well hold on to your hats 'cause we have added another "spoke to the wheel". After I returned from my three weeks training in Columbia, I had a lot of catching up to do at work, home and more importantly - playtime with Kyle....yeah spent time with Gator too (LOL).

Anyway, I received a call from the genetics lab and 3 of the 4 tests had been completed. Two of the tests showed no abnormalities, but the third showed a positive result for Fragile X Syndrome. Yes, we have something else to worry about and I don't like what I am reading on the internet. My cousin Kristi told me to stop reading and concentrate on our Monkey....just to wait and see what his genetics doctors say on Thursday.



I had a bout with guilt because I was the one that passed the "X" gene to Kyle that gave him the "fragile X syndrome". Now, I know logically that it was not anything that could be helped, but it was like I was going through a period of grief.....again....first autism and now this. I know that God is not going to give us more than we can handle.....but......????? With the help of wonderful friends, family and Kyle's doctors, I am getting over the "guilt" and focusing once again on Kyle. Just like Leigh Anne told me, take the internet with a grain of salt and listen to Kyle, my gut feelings and his doctors because every child is different and the internet usually has the worst cases on there.


I know you are wondering....what is Fragile X Syndrome.....it is "the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. " (according to www.fragilex.org)


Fragile X syndrome can cause a child to have autism or an Autism Spectrum Disorder (ASD) though not all children with fragile X syndrome have autism or an ASD.
FACT: For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation.
FACT: Approximately one-third of all children diagnosed with fragile X syndrome also have some degree of autism.
FACT: Fragile X syndrome is the most common known single gene cause of autism
For more information please click here: http://www.fragilex.org/html/autism.htm



So, is your head spinning like ours has been???? But you look at Kyle and you do not see "mental retardation". I can not imagine our precious Chunky Monkey in a group home....he's too smart and I will not allow it! As Gator said...."we will beat this and we'll show them all" that our Monkey will overcome whatever is thrown at him! And to prove that the last three pictures here are him signing "I Love You".....see one way or another....he will be able to communicate!

Thursday, March 15, 2007

Drum Roll Please.......

As a parent you don't want to believe that anything is wrong with your child. For me, I've been in a little state of denial and it's been really hard to admit that our Chunky Monkey is AUTISTIC! Yes, we did get the official diagnosis last Thursday.

I have been procrastinating writing/updating Kyle's blog because I still don't want to put it in black-n-white.....although we have been telling a few close family and friends.....writing it makes it even more real to me. (It may have been more real to me had I been able to be at the informing session instead of via conference call.) And yet we were given a 9 page report by one of his specialists, along with a packet of resources and information on autism...still unreal.

Now, don't get me wrong - I've been in a "sort of" reality mode and have known in the back of my mind that Kyle is autistic. BUT you hold out for that ever so slight chance that there's not enough to support the diagnosis and it is just something minor. I guess my very attitude toward dealing with the reality of our situation (and other parents in the same boat) is why they also include information on behavioral assistance for all of the family members...to help them cope.

On a positive note though, we are already doing most of their recommendations to assist Kyle in becoming more communicative.........
1. speech therapy at school
2. early intervention pre-school class
3. will resume private speech therapy at Spartanburg Regional Hospital
when another therapist returns from family leave
4. occupational therapy at Spartanburg Regional Hospital
5. learning sign language at school, therapy and soon at home

Now, we still have to contact some local and state agencies for further assistance, but we are on the right track.

Kyle is starting to respond to the various treatments.....though he may not be happy to participate all the time. He shocked me a couple of weeks ago by telling/signing "I LOVE YOU"! (I'll try to get some pictures of him signing this weekend.) And the look of pure joy on his face when I very excitedly responded verbally "I Love You TOO"!!!! He also verbally answered his occupational therapist on Monday with "more" and "no" -- slurred of course, but audible/understandable.

Sometimes I feel like we are being cheated by Kyle not doing and saying the typical things that 4 year olds do, but then we get that cute little smile or laugh and you forget about it. I know that we are blessed with a very special Chunky Monkey though!!!! And once we give him the tools (pointing, sign language, words, etc.) to more effectively communicate to us what he wants or needs, then his frustration level will decrease making him an even more funny, loving, smart, tease than he is today. He may not talk, but he sure is cute....and he's mine!