Love you all for being so supportive, but you didn't need to corner Gov. Bush and harass him. To make him hide in a closet?! You guys must be a real force to be reckoned with! Let me guess who were the two that got tasered...I'm sure one was MrOrnery, but let's see...who was the other one? Pamela? Lucy? You guys are too much!

Actually, I'm kidding...I know it wasn't you guys, but I thought it was funny when I read about Jebby hiding in a closet at a subway station. Thought I would share.

~Leslie

P.S. Go Colts!!!

Hi Everyone!

I tried to log in to chat tonight, but the page just keeps coming up blank. Hmmm. I'm not the most technically-savvy person in the world, so I have no idea how to fix it. It's worked before, but not now. Oh well! I'll try again another day.

No updates on all the things that have been going on with the Medwaiver deal. I'm waiting for the calls to start coming in, but alas, none yet.

I do have something that happened that's pretty cool though. For the first time in a very long time, I smiled. I was proud of myself for standing up for what I believe in, no matter the strange looks I got. I went to the county health dept., and requested an exemption for my son so that he didn't have to have his booster vaccinations. I know many on here will disagree with that desicion, and as far as I'm concerned, it's not up for debate. I am an educated parent who knows the risks vs. the benefits of vaccinations, and at this time, I am choosing not to. If you are questioning my desicion, please go to one of the pharmaceutical company websites, and read the list of ingredients. If you have questions after that, then feel free to ask me. You can also visit a website called K.N.O.W.vaccines.org, and there are a list of facts on exemption rules. Anyway, I got the exemption form, based on my religious beliefs (religios beliefs are not defined by organization, and no one can question ones personal religious beliefs), and I dropped it off at the school. I don't think they were thrilled with me, but who cares?! I was thrilled with me!

My mother-in-law came up on Friday to have lunch with me for my birthday (I had to cancel on her last Friday, because I wasn't feeling well). So I spent 1/2 my day trying to clean up. We had a nice time, and her birthday gft to me was a one-of-a-kind necklace and earring set made from Czech glass. She actually made it for me. It's really pretty, I just don't get a chance to wear jewelry a whole lot.

My son is turning 13 in 10 days. Yikes! I remember what I was like when I was 13. Well, I wasn't THAT bad until I hit 14...then I drove my parents nuts. I can't believe I have a teenager. I thought I felt old on MY birthday . I got him a cell phone. I think I may have mentioned that before. He just came out here when I was typing that. It's like the kid has radar!

Other than that, the puppies are getting cuter than ever. They are starting to really play a lot, and wrestle around. My husband and I spent the day rotating naps. I can't believe we didn't get anything accmplished. But, at the same time, we needed today. Hubby is actually taking Wed, Thurs, and Fri off so we can spend some time at home just the 2 of us. Or at least that was the original plan. He has a dentist appointment an hour and a half away on Wed, and I just found out that the kids have off on Friday. So much for that idea. My luck, one of the kids will get sick on Thursday!

Anyway, that's all for now. I'll try going on to chat again, but I doubt it will work. Take care everyone, and I'll write more soon!

~Leslie

Hi all!

I wanted to give you an update on the whole Medwaiver situation.

I talked to our local rep for the APD (Agency for Persons w/ Disabilities), and asked her if I would be getting a denial in writing. She said that I would. She's not sure of what exactly my letter will say, but on her end, it clearly stated that I needed to seek "mental health options", AKA meds. I asked her if it would threaten her job if I elevated this, and made a big stink about it. She said it wouldn't affect her, and she thinks I should elevate it. Then I asked her the question that I thought I knew the answer to. I asked if there was an appeals process, and she said that there is. I was suprised by this, because I had been told in the past that there was not.

So, I made the nessesary phone calls today to get the ball rolling on the appeal, and to congressman Weldon's office. He is a huge supporter of holistic treatments, especially for autism. I will be working on my email with my husband (he wants to *tweak* it a little), and sending it out tomorrow. I have yet to hear back from APD or Con. Weldon's office, but as soon as I do, I will let you all know.

As I sit here typing this, I am observing Loni. He's walking around banging his head and then going over to hit his sister. Needless to say, I've had to stop typing about 100 times.

Oh, I did speak with his holistic pediatrician, and he agreed that it was ridiculous that they felt they could force this upon me, and he said he would back me in whatever I choose to do. He has a "parents know best" attitude, which I love. Loni' regular pediatrician is not very knowlegable about autism (yet acts as if he knows everything), and would be of no help to us. I only take him there when he's sick.

Not much else going on today. I have been very busy with the puppies. They're starting to wean, so I spend about 20 minutes 4 times a day preparing their food. As busy as I am, those 11 puppies are still far easier to keep up with than Loni.

Gotta go for now,
Leslie

P.S. I probably won't be blgging again until late tonight...I have to watch my shows (Earl, Office, Grey's Anatomy, & ER). I love Thursdays!!!

Hi everyone!

So sorry I haven't been very good lately about responding to your posts, but I do read each and every one of them, and I appreciate all the heartfelt comments you've left.

As it stands now, I have yet to email everyone. I have a list of names of the people that I want to include on this email, but first and foremost, I have to find out if I am going to be able to get their reason for my denial in writing. I have very little faith in "the system", so I know if I approach them blindly, they are going to deny the reason for the denial (if that even makes sense). I want to make sure I do this right, because it's not just my family that will be affected by this, but rather hundreds of others who happen to share the same beliefs that I do.

I can't begin to thank you all enough for everything you've done for me. Here I am, this stranger to all of you, whom you just started reading about a couple of weeks ago, and you've banded together to help me out. What amazing people you all are! I'm so blessed that I found you all!

On the upside of things, I don't know if I mentioned this in my fit of rage last night...Loni said his first word in 3 years! It was the most amazing thing...He was standing on the couch (naked, of course), and I was walking by him, and I stopped and made eye contact with him. Not only did he reciprocate, but he began to look at me more intensely. Then he lowered his head a little bit (while maintaining eye contact), and said "uh-duh-whe"!!! I got so excited!!! I asked him if he said "underwear", and he did his happy dance (which consists of a huge smile while waving both hands in the air), and I asked him again. This time he reached for me, and gave me a HUGE hug, as if to say "you finally understood me lady!". So I took him to his room, got out underwear (all the while making a huge fuss over him and saying the word underwear as much as possible), and held them out for him to put them on. Not only did he put them on, but he KEPT them on until bathtime!! That NEVER happens!

So yesterday wasn't a total bust. I hold out one hope in this world, that is greater than anything I have ever wished/hoped for before. It's that Loni will be able to communicate with me in some way, shape, or form. I don't care if it's sign language, picture cards, or words. I just want his frustration and anxiety to be eased. I pray that we are on our way to that, and I believe strongly that everything happens for a reason. I was denied Medwaiver for a reason. Loni spoke for a reason. Maybe I needed to breathe in for a moment, and appreciate who he is and what he accomplished. It took me a day, but I was able to do that today. What a great kid!

Anyway, I will keep everyone posted, and let you know as soon as I hear back about if I am getting a denial letter. In the meantime, I am still going to work on this via other avenues (which I am able to pursue because of another blogger). I'll let you know how those work out as well. Again thank you all so much for reading and caring!

God Bless,
Leslie

Please give me your honest opinion on this letter to the Bush Bros. I am also sending this to my state Representatives, members of congress, the Lt. Gov, Dirsector for the Agency for Persons with Disabilities (the poeple who denied us), our holisitc doctor, and Florida senators. Am I missing anyone? Is it too long? Not long enough? Help! (Thank you!!!)

*I have replaced my son's real name with his nickname, and ommited our last name for this post, but obviously, I will be including it in the actual email I send*

To Whom it May Concern,

My name is Leslie _______, and I am a resident in ________ County, Florida. I am a stay-at-home mother to three wonderful children, and my husband works hard at his job, which is two hours away. My children are all disabled- my oldest, 13, has bipolar disorder and asthma. My middle child, *Loni* (5 years old), has severe autism (along with a variety of co-morbid disorders), and my daughter (age 4), also has autism.

We have been on the waiting list for Medwaiver since June 2004, and I knew when we applied that there was a long waiting list. I also knew that if things ever got bad, that I could apply for approval on a "crisis" basis. I thought that it had come to that last year when my son was stripping his clothes off, climbing on every piece of furniture in the house as well as countertops, and almost pulled a television off the entertainment center onto his little sister. We requested the crisis waiver, and were denied.

Fortunately, things got better for a brief period of time. We addressed his autism-related behaviors and symptoms with a holistic approach, and feel that it helped him quite a bit, although it was quite difficult to "sneak" the supplements into his foods, as his food intake is rather limited. We have sincere concerns that his autism may be mercury-induced, so we felt as though a medicinal approach could make things worse, with side-effects and harsh chemicals.

Since then, things have gotten much worse than they had ever been. We cannot afford the doctor visits to the holistic pediatrician, and actually had to refinance our home twice in the last year in order to make modifications to our home so it could be safe and liveable for our entire family. We are not able to turn our backs on our son for even a second, because he will get into the refrigerator and dump milk onto our floors, or climb on top of furniture, or bang his head, or even break a window. It is especially difficult to be an effective parent to my other children during the weekdays when they need my attention for homework and other things, because I am alone with them until 7 PM, when my husband finally arrives home.

Again, we felt as though we were in need of the crisis waiver, not for respite care or home modifications (both of which we are in desperate need of), but for behavioral services. *Loni's* teachers even agree that he needs constant supervision, which I cannot provide because of having two other children. My husband and I felt that if we could be taught how to redirect him, or ways to make our home even safer, it would make a difference in all our children's lives that is inexplicable. We, along with everyone who knew us, truly believed that there was no way the Agency for Persons with Disabilities could deny that we were in a crisis.

However, that is not at all what happened. We were denied services because we have not put our 5 year old son on psychotrophic drugs. I cannot for the life of me, understand why masking a child's behaviors, rather than addressing them, would even be an option, let alone a decision forced upon a parent. At this point, I have no idea what to do, as I contacted his Developmental pediatrician, and a visit there would be a minimum of $515.00, not to mention the cost of the drugs that I don't want my son to be on, and the follow-up visits. There's no way we can afford this, yet it seems to be a requirement to be eligible for the crisis waiver.

I don't want to medicate my son, but feel as though I am being forced to, so I would like to know how and why this is possible, and would like to get your feelings as to how this is being handled. I understand that usually a response is made by a member of your staff, but I would greatly appreciate it if you would take the time to personally read my story and respond, because sadly, it is an all to common story among the disability community.

Thank you in advance for your response and you time.

Sincerely,
Leslie