Geraldo Rivera Tonight

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Posted by Kyron | Posted in News, Resources, Services, Television | Posted on 28-12-2008

Geraldo Rivera

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.

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Twas the night before the night before Christmas

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Posted by Kyron | Posted in Advocacy, General, Resources, Services | Posted on 23-12-2008

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! :) 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 ;) 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.

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Glasses for Children with Down Syndrome

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Posted by Kyron | Posted in Diagnoses, Medical, Resources, Services | Posted on 20-06-2008

I came across this on one of my listserv’s and thought it was useful information for some of you.Specs 4 Us logo

Hello, my name is Maria Dellapina and I am writing to inform you about an opportunity to enhance the lives of the children we spend our lives advocating for.

I am a mother of an nine-year-old daughter with Down Syndrome and have
struggled through out her life to fit her properly in eyewear. Being an
optician for over 25 years, I was constantly searching for frames that fit
her unique needs. After realizing early on that I was fighting a losing
battle, I took it upon myself and my experience as an optician, to design
and create a special line of frames that dramatically enhances her abilities
to function in eyeglasses.

I am proud to say that recently I was able to partner with a manufacturer
who has developed my design into a workable frame for children with DS and
other special needs. SPECS4US Inc., Superior Precision Eyewear for Children
who are Special, is my vision to bring specially formated frames to enhance
the life of not only my daughter, but the lives of all the special children
struggling with this problem every day.

I have fitted a dozens of children in the frames, and have seen tremendous
improvement in the lives of all of them. Parents are e-mailing and calling
me to express their gratitude for enhancing the quality of their children’s
vision and ultimately their day-to-day lives.

As I am only one mother attempting to advocate for such a large community, I
would appreciate your help in spreading the word to those I might not be
able to reach. If your organization produces a newsletter or maintains a
website, I would like to ask your support in publishing the following
information below to reach your community.

If you would like to speak with me directly, have any further questions or
would like a sample article ready for print, please feel free to call me at
1-800-586-1885 or email me at info@specs4us.com. Please check out my webpage
www.specs4us.com, to learn more about my cause. Thank you in advance for
your time and support.

Sincerely,

Maria Dellapina

Founder SPECS4US Inc.

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Good things come to those who wait….

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Posted by Kyron | Posted in General, Medical, Resources, Services, Strategies | Posted on 02-05-2008

Well ain’t that the truth! We’re in the clear on the kidney. Apparently what was seen on thekidneys ultrasound was some kind of shadow or something and her kidneys are FINE. The past week has been pretty amazing. The thought that there could be something really wrong rocked me to my core.

It made me think about what I would do if it were really bad, what if it were finally something we couldn’t defeat and put in it’s place. There are some special parents who have to face that reality. I think they are probably the most amazing of special parents. The strength it would take to get through something like that…..I don’t think I’d have that in me.

It made me think of an article my husband had pointed out on MSNBC a couple of months ago that kind of ties today with yesterday in terms of posts. It’s a tearjerker so if you’re at all inclined to tears I recommend a box of tissues before you set out to read it (I needed a few). It tells the story of Robbie and his strong parents Jeanne and Steve. Jeanne and Steve found out during the pregnancy that baby Robbie had Trisomy 18 and would not likely live much past birth. While I loved the story of Jeanne and Steve, I believe that what they experienced is not different than what most people will experience during their pregnancy when the medical establishment discover disability in a fetus. I won’t belabor the point but it’s critical that there be a change in attitude and more than one group is trying to do just that for these special parents who are parents for far too short a time.

PerinatalHospice.com is a good example of the movement to support parents in what must be the most heartwrenching of decisions ever needing to be made. What I like about this is it gives parents a choice. It’s all well and good to say there is a choice, but to say there is a choice which is to terminate or continue the pregnancy with little or no support. No one should have to go through that alone.

There is also an author, Amy Kuebelbeck, who has a book out called Waiting for Gabriel which discusses cherishing whatever life your child has. And isn’t that really the point? Isn’t that what each of us try to do whether our child has 1 minute, 2 hours or 75 years? We want our special kids to make the most of their time here on this earth and with us. These parents don’t have any choice but to make the most of every minute, every second they have with their small, precious bundles.

Thinking there could be something ticking like a time bomb, growing on Katherine’s kidney made me think about things like that – had I made the most of the time we had together? Had I made the most of her life and maximized what she could have done, experienced, loved? I like to think I’ve done a fairly good job….I also think like just about everyone else I could do better. I’ve been given a real gift, one that so many others would kill to have. I want to make sure I don’t waste it. I just hope I remember that feeling. I hope that it doesn’t take something like a potential tumor to make me remember that and be faithful to that.

My hope for those reading this is that they can take this experience and live life as it should be lived – as every moment is precious and should be given it’s all because none of us know when it could all be gone. Today I was blessed. Today I got another moment. I hope you all get many more moments.

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The Sunday Paper for April 20, 2008…

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Posted by Kyron | Posted in Advocacy, Disability Groups, Education, Inspiriation, Resources, Services, Strategies, Sunday Paper | Posted on 20-04-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from theCoffee and the Sunday Paper past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

‘High School Musical’ production takes social inclusion to new level

One of the most successful Disney movies ever has been adapted to stage and performed by thousands of high schoolers across the nation but none possibly as inclusively as this one.

Stars shine at special needs talent show

Children at a local Ohio high school put together an amazing talent show ‘featuring’ Trace Adkins, Jerry Lee Lewis, Avril Lavigne and Soulja Boy.

Zambians pledge stronger voice in disability advocacy

A learning exchange between officials in Zambia and The ARC of the Twin Cities of St. Paul will increase advocacy for the disabled in Zambia.

Yoga’s appeal broadening to disability community

The ability to adapt this form of exercise to a multitude of disabilities makes its application almost universally beneficial.

Labour leader Gary Parent wins United Way Award

Gary Parent says he is humbled to receive this national award for doing “the right thing”

This prom is an enchanted evening

Everyone from parents to teachers to janitors kick in to make an ‘Enchanted’ evening for these special kids

U-46 holds first prom for special needs kids

Tuxedo rental: $150. Boutonierre: $10 Tickets for two: $50. The chance to attend a very special prom? Priceless.

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One Shoe Two Shoe Three Shoe Four…

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Posted by Kyron | Posted in General, Resources, Services, Strategies | Posted on 19-04-2008

…five shoe, six shoe, seven shoe – Heavens Sake NO MORE!!!

Sounds like a cute rhyme that preschoolers say to learn their numbers but for me it was a little ditty about buying shoes for Katherine yesterday.

Katherine has never been a shoe horse – when you wear an orthotic, fashion via shoes is never something you really consider. As a youngster it wasn’t so bad, sneakers are sneakers are sneakers – as long as Katherine could get the favorite color of the month it was fine. Then you become a teenager. And every girl has some sweet pair of wedges, espadrilles, pumps, flip-flops or some OTHER fashion must have that would have Katherine falling on her face, breaking an ankle along the way.

Just about a year ago now, Katherine went through a heel cord lengthening. It was a difficult decision but for us – but for Katherine it has been one of the best decisions we’ve made on her behalf. Her gait is greatly improved, her mobility far better than it has been in years. It is because of this that shoes have even become a part of the discussion again. At her checkup this past week she mentioned to the doctor that she wanted “party shoes” and after some discussions about type and length of wear party shoes it was!

So off we went. We needed summer shoes for her anyway. The boots she wears during the winter would soon become oppressive in the Atlanta heat. Katherine can burn through the sole in most sneakers in 2-3 months max. The doctor sent us to a shoe store called McMahan’s in Decatur, GA (which if you need shoes that fit well and are well fit for adults – sorry I don’t think they have children’s sizes, look no further). They were meticulous in their pursuit of the perfect solution for Katherine.

Let me mention at this point that we have known for some time now that Katherine’s feet are not the same size. They have not been for years. The foot that has been affected by her stroke has atrophied and has not grown at the same rate as her other one for many, many years. We have compensated for that by using inserts in her shoe to fill up the space.

This has worked pretty darned well – up until yesterday when the nice (and did I mention patient) man working with us was quick to comfort me in the knowledge that Katherine has stopped growing. (how comforting that is is up to interpretation but that’s a post for another day) He also explained to me that her feet have grown since she was measured in November and her feet are now officially 3 sizes and one width different from each other. We now have a size 6 medium foot and a size 9 wide foot.

If you are doing the math the little ditty I started this post out with is starting to become clear. I would for the record at this time to say what incredible respect I have for parents with 4 children who all need shoes at the same time. I thought I too would have a stroke. I thought when my husband saw the charge hit the card he’d give me whatever stroke I didn’t give myself. . .

Then I looked at Katherine walk in these properly fitted shoes. I literally cried. Not big heaving sobs but little silent tears that just roll down your cheek without notice when the love in your heart just starts to pump the water in your tear ducts. It was the single largest improvement I have seen in her since we made the decision to do the heel cord lengthening.Party Shoes

Last night my beautiful 16 year old baby young lady went to a school dance in her properly fitted party shoes that had been given a little extra help and a little extra stability by a talented man who lives in the basement at McMahan’s Shoes. My heart was pushing the water out of the tear ducts for a second time that day as I got yet another shot of how very quickly they grow up and relished the feelings I’m sure every “normal” parent feels when their kid goes off to a school dance for the first time.

While she dance the night away I just held on to the pair of shoes that would never know the joy of dancing with my daughter but were worth every dime we spent on them.

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TiVo® Alert Extreme Makeover Home Edition – The Gaudet family

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Posted by Kyron | Posted in Inspiriation, Services, Television | Posted on 23-03-2008

Ty Pennington | ABC | Extreme Makeover Home Edition

A nice way to end Easter and what has turned into World Down Syndrome Weekend Extreme Makeover joins our celebration when Ty and the crew rebuild a home damaged by Hurricane Katrina and help a family whose son with Down Syndrome has inspired them to help adults with special needs.

Can’t wait to tune in – see ya there Ty!

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The Sunday Paper for February 24, 2008

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Posted by Kyron | Posted in Autism, Diagnoses, Disability Groups, Inspiriation, Legal, Medical, News, Services, Strategies, Sunday Paper | Posted on 24-02-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from theCoffee and the Sunday Paper past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

Gymnastics Classes Bring Learning, Fun To Those With Special Needs

Gymnastics and Exercise class for children age 3 to high school give children the opportunity to participate in classes the exercise their minds and their muscles.

Disability Awareness Week

Idaho State University organizes a week of events to build awareness and create better understanding of people on campus and within the community.

Families to hold toy swap for special-needs children

A group of parents wanting a setting to hold a toy exchange for families of special needs children may have a larger event than originally planned.

Madison County special needs students to participate in ‘Big Hearts’ Pageant
The Extra Special People organization hosts and pageant spotlighting the abilities of people with disabilities.

Homeland Security Funds Grant for Special Needs
A federal Homeland Security grant is making emergency planning for people with special needs possible in this county.

For teen star of ‘Breaking Bad’, real-life disability is no obstacle
RJ Mitte provides unique authenticity to the disabled character he plays on AMC’s edgy new series Breaking Bad (Sunday, 10ET/PT)

For some parents, the emotional strain is greater

Dr. Rachel Bryant discusses the stages of mourning in relation to parents of children with special needs.

A first for Noelle; Schools’ behavior specialist honored for her work
District behavior specialist Noelle Neault honored for her outstanding work with youngsters in the Hanover Public School District.

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The Sunday Paper for February 10, 2008…

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Posted by Kyron | Posted in Articles, Education, General, Inspiriation, Medical, News, Resources, Services, Sunday Paper | Posted on 10-02-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.Coffee and the Sunday Paper

Harry Potter to help some special needs muggles to achieve their dream
An autographed book by JK Rowling donated to be auctioned off to allow a group of special needs children to take dream trip

A disability is only a part of what makes me who I am
Wisconsin resident, Stacy Ellingen, does a commentary on not allowing disability to define her.

Hypocrisy of learning disability discrimination revealed
British poll reveals discriminatory attitude toward  those with disabilities.

NC’s Gonzalez refused to be pinned down by disability
Freshman born without part of an arm excels in wrestling at local high school

Gym helps special needs kids
Gym for special kids ages 2-5 in New Zealand provides early intervention and helps kids grow physically as well as socially

Company Receives Top Award to Help Work with Special Needs Children
Ireland Company James Leckey Design wins the 2007 Spark award for their work on adaptive equipment for children with special needs.

Thompson Middle School holds a very special dance
Prom held for special education middle school children at school in middle Georgia.

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The Sunday Paper for February 3, 2008…

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Posted by Kyron | Posted in Articles, Deaf/Hearing Impaired, Disability Groups, Education, Inspiriation, Legal, News, Political, Services, Sunday Paper | Posted on 03-02-2008

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community. Coffee and the Sunday Paper

Boo-Boo Helps Children in Unexpected Ways

A Putnam County NY teacher applies to have a therapy animal for her classroom with spectacular results

Parent Group Faces Tough Times

A parent group in Maine faces funding cuts from the state which may force this program that helps get special needs parents the help they need.

A Hidden Shame: Death in Georgia’s Mental Hospitals

Death of 14 year old Sarah Crider just one of 115 in the state’s care that might have lived if not for neglect

Woman Wins Round in Disability Case
A mother of a disabled son forced to resign as a legal secretary in 2005 after not being given the same flexibility as other staff with non-disabled children won the latest round in a legal battle that could bring new employment rights for millions in Britain.

Program Helps Special-Needs Students

Program in Salem, OR area address basic life skills and apartment-living needs for special students age 17 and older, including real life experience at independent living.

Vouchers Help GA Kids with Special Needs
A publicly funded scholarship program for special-needs children has almost 1000 students participating in it’s first year with parents calling for continued expansion of this program

Humane Society Seeks Home for Special-Needs Puppy

Kansas Humane society seeks experienced dog owner to nurture a special puppy “Silence” that is deaf and partially blind.

Their Rite of Passage
Boston area class gives special-needs students lessons on bar, bat mitzvahs.

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