Special People Parenting Special Kids

Geraldo Rivera Tonight

Dec 28, 2008 Author: Kyron | Filed under: News, Resources, Services, Television

geraldo Geraldo Rivera Tonight

on the issue of waivers… the Geraldo Rivera Live on the Fox News Channel is going to be doing a show on this tonight at 10pm eastern. Sorry for the short notice but hopefully you can catch it on DVR at the very least. It promises to be a good episode with people like Chris Burke (Life Goes On) and Timothy Shriver (Special Olympics) and Clay Aiken (American Idol) weighing in on this issue. For more information read Patricia Bauer’s excellent coverage on this episode.

and all thru the house the only quiet was that one little mouse! And that’s because he couldn’t get a word in edge wise for all the ruckus from excited children! icon smile Twas the night before the night before Christmas It’s pretty amusing actually – It’s the first year that our youngest actually gets it and Katherine is quick to show her vast knowledge of everything Christmas – be in decorating trees, making presents, wrapping or the tradition of feeding Santa. She’s quick to remind him she’s the authority on all things Christmas.

It’s also interesting the difference in the two Katherine’s that I see. Katherine is quick to succumb to her innate desire to be a child and the center of all attention. Just envision the shining star over a manger in Bethlehem…..kinda like that icon wink Twas the night before the night before Christmas But when given the opportunity to rise to the occasion she can really surprise. Maybe that is the key – being given OPPORTUNITY.

I’m the first to admit – I find it hard to believe my kid is 17. She’s still my babygirl! LOL I do however TRY to give her opportunities to act her age wherever possible. Not that I’m perfect about that. We’re blessed however to have a woman who comes in to help us – because of Katherine’s behaviors in large measure in addition to working with Katherine on her behaviors and helping us handle her when she’s out of control, she helps Katherine with all types of things. Getting her behaviors under control, activities of daily living and life skills – things she will need to be a productive member of society and to hopefully have an opportunity to live on her own.

Katherine’s helper/worker/support person is paid for by a medicaid waiver. For those of you who have one for your loved one you know what a blessing it can be. For those of you who have someone on a waiting list you know how important it could be. For those of you who do not have or know about medicaid waivers let me give you the basics in a nutshell. A waiver as described in the Merriam-Webster’s dictionary as “the act of intentionally relinquishing or abandoning a known right, claim, or privilege ; also : the legal instrument evidencing such an act”. In this case it means that in certain defined circumstances medicaid will allow individual states to abandon certain rules for granting medicaid payments for things it wouldn’t otherwise pay for or waive certain requirements (such as financial ones) to give states flexibility to allow medicaid coverage. The waivers differ from state to state. You can find out more about waivers that may be available to you in your state by checking here.

The waiver would be a wonderful thing *IF* people who needed one could get one without waiting on a list for YEARS. The other major problem is that while waivers are federally funded – they are managed by the state and are not transferrable so once you have one you either stay put or – and it’s a big or – you start the whole process over. When I tell you that starting over is not desirable – just trust me on that.

Waivers are actually a pretty cost effective measure too – keeping Katherine at home costs the state FAR less than if the state needed to pay for her to be institutionalized.

Its for this reason I’m hoping some of you will be willing to go over to change.org and support an intiative for waivers being fully funded. You can get directly to this initiative by clicking here. Some of you may have seen the widget I place on the page the other day.

I hope that you all have the best of holidays – whatever it may be that you celebrate. Holidays are for families and bringing out the best in people. Waivers are like a present you get to have everyday – it gives those of us blessed enough to have one for our loved one the ability to have them living at home or other settings our loved ones approve of -  giving them opportunities that you and I just assume we will always have. For us, Katherine’s waiver means everyday is a blessing and an opportunity for her to grow and rise to that occasion.

Sense of Humor

Dec 16, 2008 Author: Kyron | Filed under: Inspiration

tree05 Sense of Humor

I don’t know about you but this year has left me with less sense of humor than I typically possess which according to my husband was close to nil to begin with. icon wink Sense of Humor I did however get a giggle out of Terri Mauro’s take on holiday carols  – Special Needs Christmas Carols! Couldn’t resist the opportunity to give you all a moment to take a break and have a good laugh! Now that we seem to have Katherine back home instead of the revolving door plan at CHOA Egleston I hope to start posting more regularly again!

Caregiver Study at Kennedy Krieger

Sep 14, 2008 Author: Kyron | Filed under: General

Thanks to Johanna Mattern Allen for forwarding this information to me.

Kennedy Krieger has a special place in my heart. It’s a hospital in Baltimore, Maryland which is only for special kids like ours. They are located within the Johns Hopkins campus and have an incredible wealth of talent available to them. Because of this, not only are they able to do some amazingly wonderful things in treating our kids but they are at the forefront of doing some spectacular research as well. Johanna sent me the following notice that I felt compelled to share with all of you. As caregivers some of us special parents may qualify for this study and I know that by getting participants to answer these questions they are best able to help others. So if you have some time and you fit their requirements, please consider helping the wonderful people at KKI out.

National Institutes of Health and Johns Hopkins Research Project  – Share Your Experiences and Help Others

Dear Parents and Caregivers,

You are invited to participate in a study conducted by researchers at the National Institutes of Health and the Johns Hopkins University.

*Why is this study being done?*

To learn more about how caregivers adjust to having a child with Down syndrome (DS). We are interested in hearing from caregivers who may be learning to adjust and also from caregivers who feel well-adjusted.

*Who can take part in this study?*
You must be 18 years of age or older and must be the primary caregiver for a child with DS. Please fill out only one survey per household.

*What is involved in this study?*

There is one survey that takes approximately 20-30 minutes to complete. It asks about your thoughts and feelings about your experience as a caregiver to your child.

*What are the risks of the study?*
There are no known risks of taking part in this study. If taking the survey makes you feel upset, you can stop taking the survey at any time. If it causes you to become upset or worried about yourself or your child, you can also contact the researchers (see below) and they will help direct you to the appropriate resources.

*Are there benefits to taking part in the study?*

You will not personally receive any benefits from taking part in this study. We hope to learn more about how caregivers adjust to having a child with DS and pass that understanding on to help caregivers in the future.

*Do I have to participate?*
No, you do not have to take part in this study if you do not want to. Your decision to take the survey will not have an affect on your child’s healthcare. If you begin the survey, you can choose to skip any question that you don’t want to answer. You can also stop taking the survey at any time. If you finish the survey and then change your mind, we will not be able to delete it since the surveys are all anonymous.

*Who else will know that I am in the study?*

We do not ask for your name or contact information on this survey. If you provide us with your name by calling or writing to us, we will not link your name with your responses. This study will not be part of any medical record. When we report our research results, it will be done with no identifiable information from individual participants.

*How do I participate?*
The survey can be found online at www.downsyndromesurvey.com. If you prefer to complete a paper version of the survey, please contact Megan Truitt at (301) 443-2595 or mtruitt@mail.nih.gov to receive the survey and a pre-addressed and stamped return envelope. Any contact information you give to the researchers in order to mail the survey will be immediately destroyed after it is mailed. Also, if you are more comfortable completing the survey over the phone, please contact Megan Truitt (see contact information below) to arrange a time to do so.

Thank you for your interest and time! If you are taking this survey online, please print a copy of this consent form so that you have the researchers’ contact information.

Also, after the study is complete, we plan on giving out a short summary of the results through the recruitment sources as a way of saying thanks for participating. If interested, please check the Kennedy Krieger Institute website below for the study summary: www.kennedykrieger.org/kki_cp.jsp?pid=1399

Megan Truitt
Associate Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 443-2595

Barbara Biesecker
Primary Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 496-3979

Pancreatitis part 2

Aug 25, 2008 Author: Kyron | Filed under: General

Well Katherine spent another 5 days in the lovely 4West med/surg unit at Children’s Healthcare of Atlanta Egleston (hey ladies!!) with another bout with pancreatitis. Not that the accommodations are pretty darned nice (and the food is really darned good for a hospital) but I’m ok with that being our last stay for a while. She’s been home for 3 days and I’m still exhausted – and behind on everything. Because to top it off my youngest’s 3rd birthday was this past Friday. So it was pretty crazed week last week – but you all can relate – I know you can!

Because the pancreatitis is an ongoing concern we are now having the exciting <rolling eyes> opportunity to change seizure medications. Oh let’s be fair its also one of her 2 mood stabilizers as well because if it’s got to be exciting we know how to do it RIGHT. <eyes rolling>

Those of you with kids who have seizures know how hard it can be to find the right medication and right dosage and certainly it’s no different for those of us with kids who have mental illness. Since the anti-epileptic medications are frequently used in mental illness as well we were fortunate that we could piggy back some of what Katherine needed for the bipolar treatment with what she was already on for the seizures. Unfortunately what is a blessing in one direction can be a real potential for peril in the other. We are going to another anti-epileptic which is also used in the treatment of bipolar disorder so I’m hopeful (but far from certain) that this transition will work. But as there is no choice, we’ll just take it one day at a time. At a minimum it’s a 4 week process so wish us luck! icon smile Pancreatitis part 2

A champion ahead of his time

Aug 14, 2008 Author: Kyron | Filed under: Disability Groups, Education, Inspiration, News

Obviously the whole Tropic Thunder thing has touched me. I’ve seen those looks. I’ve seen them used at my cousin Edith. I’ve seen them used at my daughter Katherine. I’ve seen them used at my friend Joey at the local Publix. I’ve heard the casual use of the word retard. I have to tell you I don’t consider myself the most PC individual in the world. I guarantee you however I wouldn’t walk up to my friend Debra and use the “N” word. I wouldn’t walk up to my father-in-law and call him a “S”. I can tell you for certain however that if I did I feel confident that both these individuals would feel well within their rights to defend themselves and WOULD defend themselves – whether verbally or physically.

I think generally speaking, people at least think twice before they use racial or gender biased terms. I am pretty certain (my personal observation) however that people don’t think twice about degrading the people in our society who cannot defend themselves. What is it?? Is it the easy shot? How can it be so un-PC to speak about gender, race, orientation but its devastatingly obvious to me that the issue of bias against intellectual disabilities is viewed as almost a joke. A fairly prevalent note I have seen is that it’s PC gone “too far”. UH HELLO?? Its gone too far?? HOW SO??? Seems to me that for all the “equality” speeches that you’ll ever hear no one seems to think it means for people who are intellectually disabled – THAT’S DIFFERENT. Please don’t ask me HOW it’s different. I sure as hell don’t get it.

That’s why I was so happy when I was looking at my facebook account to promote the R-Word site I found the R-word cause started from what I can tell by a young man Soeren Palumbo. I’ve added it as my featured cause on my facebook account. But then I found a real gem I wanted to share with all of you. It’s just shy of 10 minutes but it’s worth it!! IF this works I’ve embedded the video here. If not you can see it by clicking here.

Take the PLEDGE!!

Aug 13, 2008 Author: Kyron | Filed under: Disability Groups, Education

I saw Good Morning America this morning. I damn near lost my breakfast. I had to clean up the coffee I spit out. Ben Stiller said on NATIONAL TELEVISION that the people organizing protests (and I’m paraphrasing here) were raising a stink about stuff they had “heard” about the movie but had not seen it. Uh HELLO?!?!? Screening that your distributing studio arranged for numerous representatives of disability groups?? His argument that they are just “making fun” of the actors who “play disabled characters to earn awards” is completely disingenuous as well.  The argument we should have protested about Forrest Gump and Rain Man is as well. Both of those movies showed the worth of the individual with disabilities as well as the learning process those around them went through to gain acceptance for them and the positive force of love in maximizing their potential. Did I miss something???

Never mind – I agree with many who say this needs to be made a teaching moment and was thrilled to receive an email this morning with the following site being highlighted:

The R-Word – A Special Olympics Initiative

As the site itself says

Our choice of language frames how we think about others. It is time to ACT NOW and pledge your support to eliminate the demeaning use of the r-word.

Please take a moment to go over to the site and make your pledge and spread the word.

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