Discouraged...

Some of you are aware of the Medicaid waiver program in Kentucky and how I have fought and fought for Levi to be approved. It is a long, crazy story that I am too frustrated to get into, but he was assessed last June approved for minimal services in August. We didn't even find out he was approved until October. The funds couldn't be put to use until months later, and in March I applied for a budget exception to get Levi approved for more. His increase was granted just two months ago. Every year, we have to do a new assessment and reapply. The assessment was done this month, and the new start date was Aug. 18.

I got a letter Monday stating that he has been denied ANY SERVICES AT ALL. Nothing.

I am sick over it all. I spent the week working on my letter of reconsideration and gathering letters from the pediatrician and Levi's therapists. I normally have the strength to press forward for Levi and fight for him, but I have had a few, "I did not sign up for this" moments this week. I have hardly been able to eat (and anyone that knows me understands how unusual THAT is).

And, oh...Remember that new physical therapist I am so fond of? She got a new job and will only see Levi one more time before we move onto our third physical therapist this year.

We could hear something about the Medicaid waiver as early as next Friday, but I am not holding my breath. I am still waiting for the new physical therapist that has been lined up to call me.

I just want to do what is best for this little guy. Why does it have to be so difficult?

Using the curtains for a game of peek-a-boo

Blogger Photo Storage Solutions, Some Scrapbook Pages & Wayne Brady's Apology

So, I hit my photo storage limit with blogger. It was a total shock to even realize there WAS a storage limit. But thanks to the world wide web. I found an easy solution and now use Photobucket to upload photos. (Click here for the website that taught me how.)

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In other news, Wayne Brady has posted an apology on his Facebook page.
Here is what he wrote (see my last post if you aren't sure what I'm referring to).
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This letter has taken me a few days to compose because of the conflicting emotions that I've experienced since the day of the Roast and it's subsequent airing. The environment of the Roast is a comedic (hopefully), tasteless (mostly always), affair that encourages everyone to out-filth each other. Not normally what I'm known for, right? But, when I was invited, I jumped at the chance to play outsi
de of my perceived "norm" and have fun. The Jeff joke was written for me and at the end of the day I take full responsibility for saying it. It wasn't meant as a slam to Trig and at the time I didn't see it that way.

I could defend it as a performer, but I would rather apologize from the bottom of my heart as a father. I understand how a parent, who loves their child, who tries to nurture and shield them when they cannot defend themselves, would take offense.. I have many times experienced this feeling. I've had awful things said about my daughter.. Violent and most times racial stabs. Being in the spotlight I have built a thick skin to these sorts of things. My daughter ( who's now old enough to understand ) is another story. That being said I write this letter with sensitivity and a strong stance of responsibility for my actions.

I thank everyone who's expressed their opinion for reminding me that my voice is heard... It's easy to forget sometimes in front of cameras and lights.

To the Palins, please know that no malice or harm was meant. To the other families who were touched negatively, I hope you'll be able to accept this apology as well.

I've always said that people in the public eye should be held responsible for what you say and I'm no hypocrite. Thanks for reading and letting me express my side.

Take care all,
Wayne
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A Note to Wayne Brady RE: Down Syndrome

Dear Wayne Brady,

I'm sure you've heard, "Any publicity is good publicity." I don't care much for Rosanne Barr and don't even have cable television, so it is unlikely I would have ever heard your words at her roast. I had never heard of Jeff Ross either, but I did see a video of your performance.

And I do know who Trig Palin is. He and my son have something in common. They both are little boys with Down syndrome.

In the video, you looked at Jeff Ross who had disheveled hair and was wearing an outfit that made him look childish. (Click here to see a photo. I am having problems uploading one.) You told him that Sarah Palin hates him because he reminds her "of what Trig is going to look like when he's 40."

I watched the video a second time after letting a little of the sting wear off and was surprised to notice that your words actually seemed to be thought out ahead of time. It didn't sound like a joke that just popped in your head and made it's way into audible words without forethought. Then it got even worse! What really struck me was how you then defended yourself by saying, "F*** ya'll" to the audience after they booed you! Apparently, you got roasted yourself earlier in the show and were upset about being booed. You looked seriously upset that people didn't like your joke. Here's the thing: You were at a roast! You chose to be there, and I am assuming you were getting paid to be there. Trig Palin is four-years-old! Come on!

You must not have thought about how those of us that have children with Down syndrome worry about how our kids will be treated. Just the thought of them being made fun of brings many of us to tears. We spend sleepless nights by their hospital beds and hours upon hours of our time watching them struggle through therapies. We hurt because even after all of our efforts, they are still at a developmental disadvantage.

And then we have to worry about people who think all of their disadvantages are funny.

If any publicity is good publicity, what  do you think about all the publicity for Down syndrome that is now on your Facebook page? I wondered if you'd come out and apologize, but that takes a man, and your recent actions aren't too manly to me. I hope your heart will be changed and that you will become sensitive to people with special needs. It is just unfortunate that if it happens, it will happen the hard way, and I am sad about all the mean comments you are receiving. I do not think hateful comments are an effective way to respond, but a lot of people were hurt by your words, and a lot of Mama Bears want to fight for their children.

Sincerely,
Someone that used to be a fan
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Click here to see Wayne Brady's Facebook page and all the comments from the Down syndrome community. Feel free to add your own. I posted a photo of Levi and said, "Actually my son with Down syndrome is much more attractive than Jeff Ross. Boo to you, Wayne Brady." And I am putting a link to this post there, too.

Click here to read a great article from February about Trig and how he greets each day with applause. 

Earlier today there was a post on Wayne Brady's Facebook encouraging fans to see his performance at Rosanne's roast with a link to the video. The video is no longer available on YouTube, and the post on his Facebook page has been removed.

Levi, the Big Boy

Picnic!

There are some important people in my life that don't have facebook, so I apologize to those of you that have already seen these pictures from Saturday's picnic for the Down Syndrome Association of Central Kentucky. We had a blast.