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.

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!

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!

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!

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!

Kool Kyle

For the next three work weeks, I am in Columbia for DSS Child Protective Services training. While I'm here, my parents have "the Monkey" ....well mainly my mom! Gator has to leave very early each morning and its best to just let Kyle spend the night Monday-Thursday nights.....I'll be back Friday afternoons and go back on Monday mornings. He's in good hands, but those hands need your prayers for the ENERGY to keep up with the Energizer Bunny!

Anyway, as I was packing, Kyle decided he was ready to go too! Now, when his uncle Scott sees this....he's gonna flip! Oh well, mom's prerogative to take all the "good" pics of her child.

These are the things of which memories are made.........the funny ones that is. And I'm glad I caught this moment in time 'cause I'm really missing our little tease. It's really hard not being at home, especially since we find out on Thursday what the autism specialist has to say about Kyle. My mom is going with Gator and they are going to include me via conference call, but I still feel bad that I won't be there in person.

He may not be verbally communicative, but he definitely gets his point across. And guess what....no talking back...yet....just grunts.

Still, don't know where he gets the attitude/personality from?!?!?!?!?

Genetically Speaking.....

The latest in the quest for a diagnosis for Kyle involved Genetic Testing. We spent over two hours yesterday repeating (again) our family histories, stories, medical backgrounds, etc. I just whip out Kyle's 3 inch file folder with medical surveys, IEPs, therapy evaluations, school records, immunization records, etc. and hand them over to be copied into yet another doctor's file on our Chunky Monkey.


We won't have any test results for 4-6 weeks! So, again, we wait. I just want to know what we are dealing with in order to move forward. I feel like we are trapped in a time warp! I know that all of these specialists are working together to establish a formative diagnosis and that they don't want to rush it.........which is the right approach....but I am sick of spending my life in a doctor's office.........and believe you me Kyle is too!



Unless the want to take a picture of you and then we turn on the charm!

Just don't know where he gets this from?



Genetics?

You be the judge!

MRIs and EKGs.....we need a BREAK!

In order to rule out seizure activity and heart problems, Kyle's specialist ordered an MRI and EKG. There is nothing more heart breaking to a mother than to watch as her 4 year old is held down by his parents and nurses in order to inject an IV into his arm....then only to watch as he passes out in 6 seconds after receiving the "sleep" medicine. Kyle went so limp that he could not support his head.......just like an infant.........in 6 seconds flat! We then had to watch as he was put into the MRI machine and sit there just praying for it to be over. I almost rubbed a hole in Gator's hand worrying. After the MRI, they did the EKG. It took Kyle over an hour to fully wake up from the anesthesia and be able to support his head again.

What's worse it that we had to wait days for the results. The MRI came back negative, but the EKG showed signs of mild Arrhythmia. Kyle is now being referred to a Pediatric Cardiologist for further testing. See, there is a history of heart disease in both Gator's and my families, plus Gator has Wolf Parkinson White syndrome (he had surgery a couple of years ago that corrected it though). The specialist can not give Kyle any kind of medicine to slow him down, in order for him to learn, until he gets a clean bill of health....heart and head wise.

We have genetic testing on Tuesday and are suppose to get some form of diagnosis on March 8th from the specialists. Who knows, but I am ready to know exactly what we are dealing with so we can attack it head on.

Along those notes, after the MRI and EKG on 2-16-07 we took Kyle to Myrtle Beach for the weekend (after a trip to Wal-Mart for a much deserved toy). WE ALL NEEDED A BREAK! We had a great time.....just relaxing. Kyle had a blast at Ripley's Aquarium, swimming in the indoor pool & hot tubs, chasing waves on the beach and flying a kite for the first time. We also got to see my former youth director and very dear friend, Harry Tokunaga.

Thanks for all of your prayers and support! We love you!

Our Little Valentine

Boy how things have changed. I use to only see Valentine's Day as "gifts (jewelry) for me day". Of course that was before a husband and a chunky monkey! Now what my perfect Valentine's Day consisted of....starting the day off by giving kisses to the monkey, enjoying others get flowers and a little party at work, was having the monkey walk in with his daddy with ONE single red rose (and goodies from my mom - homemade truffles - I have the best mom!), Gator fixing supper (and cleaning up), watching Winthrop on TurnerSouth beat Charleston Southern, and seeing the pure look of joy on Kyle's face as he dug into his own little Valentine's Day cake! Not what I used to want for Valentine's Day........but MUCH, MUCH BETTER!

We hope you all had a wonderful Valentine's Day!

Rascal Flatts

You may recall me mentioning our favorite music group, Rascal Flatts in an earlier post. Well Gator and I had 5th row seats in Columbia Friday night (2-9-07)for their concert.......which was out of this world as usual! We are fan club and Flatt Dog Pound members with VIP ticket access and Meet & Greet opportunities. I was fast enough online to get my name on the list to go backstage Friday night, but Gator was not.......oh well!

Flatt Dog Pound members were asked to wear red t-shirts to the concert in Columbia decorated with Rascal Flatts.com and Flatt Dog Pound stuff. Of course we wore our red t-shirts! I had put a photo of RF with Kyle at a concert in Columbia October 2003 when he was 10 months old on the front of our shirts. {I had made him a onesie with "I was listening to Rascal Flatts before I was born" on the front and "Flatt Dog Pound" on the back. Gator had surprised me with fan club memberships for both of us and the meet and greet passes. You are allowed one M&G a year and one photograph and autograph per member at the M&G (which has now changed - no personalized autographs - just pre-printed ones). We chose to have one photo with all three of us and one with just Kyle. They signed Gator's cowboy hat and Kyle's onesie.}

Anyway, while I was backstage awaiting my turn for a M&G and photo-op, my shirt caught Gary's eye..........the lead singer for RF. He stopped the M&G and walked across the room to take a closer look......at the photograph of Kyle with them on my shirt. As he walked back, he joked to others in line to "take a look at that hair", meaning his 4 1/2 years ago. Of course the woman in front of me 'bout passed out because he walked over to look at my shirt. When it was my turn, Joe Don walked over to look at my shirt and asked "if that was our baby"? Well, of course Kyle was......just joking! I went on to explain that Kyle was 10 months old at the time of the photo and they recognized that it was the CMT tour. I told them that Kyle was now 4 and was being tested for autism. Gary took the recent photo of Kyle as I told them how much their music meant to us and that it was the only thing that would always calm Kyle down! (He knows them.........I even recorded them on the Grammys Sunday night and he knew them even though they were singing Eagles tunes!) They were stunned and caught their breath as I told them the story and they thanked me for telling them as they hugged me (okay.....eat your heart out). Anyway, as we were getting ready for the photo to be taken, Joe Don took the picture of Kyle from Gary and asked "if it was for him and could he keep it?"..........now do you think I am going to say no to a RF?!?!?!?!.........well, of course not. Now, I am also a realist and they may have just forgotten what I told them and Kyle's picture could have been thrown away, BUT nothing will take away the look I say in their eyes of amazement and wonder when I told them what they meant to Kyle!

So, when asked what are some of Kyle's favorite things........horses, airplanes, Disney movies and Rascal Flatts.........believe me he will one day M&G them too and hopefully tell them for himself what they mean to him. For now, "My Wish" for Kyle is that he grows happy, healthy, wise and someday will be able to tell everyone what his wishes and dreams are.