thespecialparent.comSpecial People Parenting Special Kids

I was pleased to receive notice about a speech an amazing woman, Julie Beckett, gave recently to a group in Madison, WI (I am so going to have to get up there someday with the excuse of visiting my brother)

Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. The virus caused severe damage to her body, including her ability to breathe. She was placed on a ventilator and spent three years at a pediatric intensive care unit. Created in 1982, the home and community-based waiver program often called the Katie Beckett Waiver program, allows children who would otherwise be hospitalized or institutionalized to get treated at home and continue to maintain Medicaid eligibility. Katie was the first recipient of this waiver. Her mother, Julie Beckett, worked with Congress to obtain this waiver.

In her keynote, Julie shared the timeline for the national healthcare reform legislation:

May 20: bill will be introduced
Aug 22: they hope to pass it
Jan 2010: they hope to have it in place

Julie shared that they are moving very quickly to get this reform in place and that the current draft of the bill does NOT include provisions for individuals with disabilities; it basically treats everyone the same whether they have special needs or not.
She emphasized that her decades of advocacy work have taught her that even worse than being uninsured is being *under-insured*–and that we need to make sure that people with special health care needs are included in this bill.

Katie and Julie Beckett asked us to participate in the phone-calling efforts to change the bill to include provisions for individuals with special health care needs.  We can’t leave individuals with special health care needs behind as we “move forward.”
Tomorrow, May 13^th is the national call-in day for this issue
.   Please see the instructions below from the ARC & UCP on how to help tomorrow.

It’s easy to do and so important.  Please share this and thank you very much for your help!

The Arc and UCP Needed to Make Calls to Senators on May 13^th

Fixing the health care system is a top priority this year for Congress and the Obama Administration.   While there is commitment by some to include long-term supports and services in health care reform, there is no guarantee that this will happen without strong public support.

The Arc and UCP are working with several national disability and aging organizations in sponsoring national phone-in days to show public backing for including long-term supports and services in health care reform. We must establish this public support with Congress. We want this joint effort to generate at least 10,000 phone calls to the Senate on May 13^th.

Toll Free Number: 866-459-9232

What to say:

• Hello, my name is ____ and I live in ____.
• I believe that health care reform must include long term services and supports.
• I urge Senator ____ to support including long term services and support in health care reform.
• This issue is so important to me because ___________________
• Thank you.

The Coalition for Citizens with Disabilities is providing this toll-free number for constituents of member organizations to call their Senators.  We need to demonstrate a strong response from The Arc and UCP, your members, and your constituencies.

» Spread the word «

Dial the toll-free number between 8:00 AM and 6:00 PM Eastern and ask to be connected with your Senators. If the line is busy, try back later. Once you have completed the call, be sure to give feedback.

Background:
Why Include Long-Term Supports and Services
in Health Care Reform
While 48 million people lack insurance/coverage for their health care, 250 million people lack insurance/coverage for long-term services and supports. Ten million Americans daily need long-term services and supports with 40 percent of them under the age of 65. Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.

Virtually every American will face the need of a family member needing long-term services and supports. And yet, the nation lacks a comprehensive national system for financing and delivering long-term services and supports to individuals with disabilities of all ages.

While there is commitment by some Senators to include long-term supports and services in health care reform, there is no guarantee this will happen.

The Senate Finance and Health, Education, Labor and Pensions Committees are are scheduled to finalize their legislative proposals for health care reform within the next two to three weeks. The bills are expected to be merged on the Senate floor in June. The three House committees are also developing their own legislation, but are not as far along as the Senate.

We must call on the Senate to provide real health security by including long-term services and supports in health care reform legislation!

Thanks to Johanna Mattern Allen, the ARC and UCP for this information

© 2009 The Disability Policy Collaboration

New Year is a time when people are celebrating new beginnings, making resolutions and looking forward to the year that is coming. It is probably in this vein that the John Travolta/Kelly Preston family went to the Bahamas with family and friends this weekend. Which makes Friday’s events so devastatingly tragic. Parents should just never outlive their children. While there is no certainty to the cause there is a lot of talk about Kawasaki’s Syndrome (KS) which Jett had as a child. But there is also talk of Jett having a seizure in the shower and then being there for some time before being found. Of course it’s new and the details are incomplete. Apparently there is even a rumor that Jett was autistic but this has been denied by John Travolta (it should be noted that scientology, the religion practiced by the Travolta’s, does not recognize autism as a disorder).

All the speculation can be done by someone else at some other time. I think at a time like this we’re all special parents – because no matter what all our children are special. Jett Travolta is only a bit younger than my daughter Katherine. My daughter is sleeping, breathing in her bed tonight. Her younger brother is in the next room letting out some very cute baby noises while he sleeps.  Jett is not with his family. It is not natural, not normal, it’s not even fathomable.

I’m not a big “resolution” person per se…mostly because I used to have all these good intentions – but my follow-thru was fairly lacking…like many people My new years tends towards reflection rather than idol promises that I’ll inevitably bail on 2 weeks in. I had already had some thoughts about this past year. It was a rough one on so very many levels. Katherine’s bouts of pancreatitis, her behaviors, my own struggles with RSD – I wasn’t going to be weeping as 2008 left. Because of this I felt like I had lost some of the joy of my kids. No – I’m not meaning the rosy Carol Brady “I never cook, have a maid and my children are beautiful and annoyingly perfect in every way” kind of joy. I am talking about that every day joy of savoring your kids victories, the simple observations they can make which just make you belly laugh – unless you are too caught up in being overwhelmed in the every day. And then a news report like this catches me like an avalanche in snow country.

For the Travoltas there is an abyss they must struggle to pull themselves out for the sake of their other child, Ella, who will also be struggling to cope with the loss of her big brother. For the rest of us watching the news on this it could be a blip on the screen, a moment of silence as a fellow parent for those whose suffering that you can only imagine. I would emplore you to make it one more thing. I would ask you make it the impetus for taking time each and every day – even if it is only a few minutes to savor your children.

We all spend time with our kids each day – we feed them, clothe them, bathe them, get them to and from school, doctors, therapists etc. This isn’t the part I am talking about. I’m talking about making sure at each point you try to get to their level, to watch the world with the wonder your child has for it. To truly LISTEN to what they have to say – no matter how mundane you may think it will be. Sometimes its so crazy busy we get into a rote pattern with what has to be done – eating, bathing, for some of us medications, therapies and that’s only their stuff! Its times like this where some high profile individual loses a child that we need to make very sure that that death was not in vein. I think one of the best ways to honor the life of that child is to make sure that your child benefits from it. Let them benefit by having some truly special time each and every day with you.

Each day is precious and you never know when it will be the last one. Don’t make it a time of regret for all that could have been…take today to make memories that last a lifetime, and beyond.

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.

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.

Well I’m not surprised…..and I’m sorry about that. Apparently Dreamworks will make no effort at this time to rectify the use of the word “retard” or otherwise ameliorate the negative sterotype being proliferated in the movie Tropic Thunder.

A recent viewing left David Tolleson of the National Down Syndrome Congress feeling “like I had been assaulted” and calling for major action. Timothy Shriver is not only organizing a boycott for LA tomorrow but working to get a condemnation from Congress for the use of Hate Speech as well as calling for further support of the intellectually disabled.

You can read more by following these links:

• The New York Times – “Nationwide ‘Thunder’ Boycott in the Works”
• Washington Post – “What Tropic Thunder Thinks is Funny”
• Reuters – “Advocates for Disabled to Boycott Tropic Thunder”
• Special Olympics Press Release
• Patricia E. Bauer – Tim Shriver Op-Ed on Tropic Thunder

Those living in Georgia – According to Heidi J. Moore’s Advocacy Mailing List boycott rallies are being organized:

Jennifer Carroll- Former AADD- Partner’s and Policy Making Graduate wants to form a boycott here in Georgia. The movie is going to be released this week on Tuesday/Wednesday. We are looking at having rallies/boycotts at 5 metro Atlanta theaters, as well as, Macon and Augusta (where the movie is going to premier as well).

This is a VERY quick timeframe and need volunteers ASAP.

If you are interesting in getting involved in helping make a difference and educate the community on why this is so important for individuals with disabilities- Please contact Jennifer at jenniferofroswell@msn.com . There needs to be a team of volunteers at each theater location.

Please reach out to your local groups of the ARC, Special Olympics etc. to see how you can participate or otherwise support this boycott.

UPDATE: You might want to read this article on MTV where Ben Stiller and Ethan Coen (co-writer) and their defense of this movie. I think the defense makes me even more disturbed

I posted about Trig Paxon Van Palin the other day. He is the beautiful son of the Governor of Alaska and her husband. In their press statement on the birth of this their 5th child, the stated that:

We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.

It was with that thought in mind that I felt compelled to bring this article to your attention. The site, Beaconcast has a provoking article online about eugenics. It’s a word that very much stirs a myriad of emotions. There have been incredibly famous advocates of the philosophy, believing it was altruistic, and yet there are so very many who believed that it was immoral. Certainly it’s use as a justification in Nazi Germany would prove its immorality. Yet it’s not just regimes like Nazi Germany that have used it. US President Woodrow Wilson helped to have Indiana (the first of over 30 states) adopt legislation in the early 1900’s for compulsory sterilization of certain individuals (the mentally ill, mentally retarded). The law was overturned in Indiana in 1921 but there are laws still on the books that are rooted in the philiosophy of eugenics.

The debate should heat up when you consider that disability advocates now state that 92% of fetuses diagnosed with down syndrome are aborted. Is this not eugenics – a “cleansing” of the human race of those considered genetically inferior? I think back to my pregnancy with Katherine.

My pregnancy was considered high risk because of my asthma and regular inability to control it. While I underwent test after test monitoring it’s effect on Katherine I was the willing guinea pig: bloodwork, ultrasounds, fetal monitoring. In and out of the doctors office and hospital week after week I went like a good little patient. Never once did I think about what would happen if they told me something was wrong. What the heck would I have done? Would I have continued the pregnancy? What if I had known that she had “something like” Down Syndrome? What if I had known what I know now about all the difficulties she would have? What would I have done? Would I have terminated the pregnancy? Would I have continued on and dealt with the outcome?

I can honestly say I don’t know what I would have done. I’d like to say with some certainty I wouldn’t have terminated the pregnancy because in general I’d like to think that’s me. But I was young (23) and in a new marriage spawned of that very pregnancy and without the support I depended on most (my mother had passed within a year of this). I was a mess quite frankly. And what would the doctors have said to me? Would they have encouraged me to terminate the pregnancy? Would they have presented me both sides of the equation? I didn’t have to worry about that because not a single test ever showed a problem, not a single test ever gave any of us an inkling of what was to come.

Even at her birth when we knew something was wrong – did anyone acknowledge it? When they had to acknowledge that ½ of her brain had been destroyed by a massive stroke, their advice was to put her away like a piece of broken luggage in an institution and move on – and that was in 1991. I didn’t take that advice but that’s just me.

Remember there’s a statistic that 92% of people who know there’s a difference in their child choose to terminate. Somehow I feel like the medical profession is failing 100% of their patients. It is hard, to be fair, and put yourself into someone else’s shoes however I don’t think that an unbiased picture of the pros and cons of having a child with a disability is being given.

Before you all bite my head off about how dare I say there are cons – there are CONS in parenting ANY child so its completely unfair to say there are no cons in parenting a special needs child. Anyone who has walked in our shoes can’t be honest with themselves if they don’t say this is the hardest job you’ll ever love. (sorry Army advertising team) Maybe it’s because they don’t know the joys of our special children, they really don’t talk about it. Obviously as physicians, they know of the potential medical pitfalls of many special needs children. They do not however know the joys, insights, and incredible love – and I’m not sure who’s educating them.

The current ignition point for this revitalized debate is David Tolleson. He is the executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody, GA as well as a local councilman. Mr. Tolleson says he is: “Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome.”

Mr. Tolleson is of course concerned specifically about the down syndrome population but it truly extends to anyone with a disability. What would a parent do if they knew their child would have epilepsy, cerebral palsy, tay-sachs, sickle cell anemia, juvenile diabetes, or knew that their child might be born missing a limb(s) or would likely develop autism. What would they do? What would you do?

Tolleson states:

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

He’s right on the mark you know. I am certain that given the challenges of raising just about any teen were disclosed more specifically in advance, the human race would have long since died out.

I guess my problem is that statistic of 92% stirs me in a place so deep I’m driven to revulsion. Who’s to say what will be the next trait determined to be socially unacceptable? Red hair? Green eyes? Deafness? Blindness? When does it move to segregating those considered inferior from the rest of society?

Tolleson makes an incredibly important point in his argument however – above and beyond the specific elimination of any population. With the decline and elimination of various disabled populations there too will go support for care, research, and increases will happen in exclusions from insurance policies.

There are supposed to be differences in our society, it’s what makes our culture rich. Who gets to decide the differences that are ok and those that should be eliminated or what’s acceptable and what’s not. Who is to say it won’t be your kid? Who is to say it won’t be mine?

I’m sure I’ll get messages that are less than thrilled about this post and that’s ok. It’s actually supposed to stir the debate. I know my child. I know many others with a variety of disabilities whose lives have touched mine and made me better for knowing them. I would hate to think that some shortsightedness on someone’s part made it so that someone else missed the incredible opportunity.

Oh no, not a bad joke just look at those kids!! They sure do look like they are having fun!! Your kids can have fun too and for a good cause!

Citrus lovers from around the world including the United States, Canada, China, Korea, Hong Kong, Japan, Singapore, Malaysia and Taiwan are invited to submit original photos of themselves with a creative “Sunkist Smile” (orange wedge in the mouth) to celebrate Sunkist’s 100th Anniversary. Now through May 15, 2008, consumers are encouraged to submit a photograph of their best Sunkist Smile and brief caption to www.sunkist.com/smiles.

Judging criteria are based on Creativity (40%), Fun Factor (30%) and Quality of Image (30%). One grand prize winner from each country will win a trip to any country in Asia and have his or her photo prominently shown on the world-famous Reuters Sign in Times Square in the heart of New York City! Five runners up will each receive a digital camera and one month’s supply of Sunkist citrus!

Adding to the excitement of commemorating the 100th anniversary of the Sunkist brand, Sunkist will celebrate and honor consumer participation by making a donation of $50,000 to Special Olympics, another brand known for creating joy and helping families stay active and healthy. See www.sunkist.com/smiles for official contest rules.

Terri Mauro of Special Children at about.com summed it up best in her post about this contest when she said the contest:

sounds like a good opportunity to get silly with your kids and upload a photo for a good cause. Since children with special needs stand to benefit from the Special Olympics donation, it would be cool if they were well-represented in the photo gallery, too.

Why not take a bit of time this weekend and have some fun with the kids and maybe you could be the lucky winner!! Certainly all our children who compete in Special Olympics will be winners by building up that donation!

I’m new at this but I’ve set up a Flickr Group ‘The Special Kids’ so we can share pics of our beautiful kids. This way we can see all our kids who we submitted to the Sunkist contest!!

There are many children with a diagnosis of ADHD, some concurrent with other issues. A new study from the American Heart Association however is showing that a basic test should be done on our kids taking stimulants for their ADHD.

The American Heart Association believes that all of the estimated 2.5 million children taking ADHD medications should have an EKG to rule out problems. This test should be done on children both who have been taking the medication for some time as well as those who have just started. No one believes at this time that the medication is causing heart disease. It is believed that somewhere in the neighborhood of 1 in 50 of children being treated for ADHD may have a previously undiagnosed disease. For some reason children with ADHD are 3 times more likely to have heart problems.

This MSNBC/Today Show video is well worth watching if you have a child taking ADHD meds. Please take a minute to point it out to a friend who has a child who is taking these meds if yours isn’t. It’s information that should get out there. While it’s not reason for panic, it is most certainly reason to check with your pediatrician or prescribing physician. An EKG is an inexpensive, non-invasive procedure that takes only minutes but could absolutely save a life.

Governor Palin,

Congratulations to you and your husband and happy birth day to Trig Paxon Van Palin! With that, we take this opportunity to also welcome you to the amazing country of Holland. You’re very familiar with the Italy tour (having four older children) and I want to assure you that your time in our little part of the world will be very different than your tour of Italy but as your statement already seems to recognize it will be no less thrilling albeit with different challenges, milestones and achievements.

God has indeed entrusted you with this beautiful soul. It speaks volumes because it takes a truly special person to be a special parent. That’s not to say we’re a bunch of saints by any stretch. We all have our share of foiables. Just by way of example, as a rule special parents suffer from depression at a higher rate than parents as a general category. We won’t all have the same foiables but we all share one thing in common – a fierce love of our child and a determination to maximize their potential for success and independence in the future.

You’ll find that it’s not always so easy to achieve that. There is the medical labyrinth, the educational labyrinth and the governmental labyrinth. Oh and the stigma labyrinth, the hyperactive worry and oh never mind. In the end game it all pales in comparison to what joy you are having right now holding that precious bundle you gave birth to.

My mother often said to me – much is expected of those to whom great things are given. I certainly hope you’ll abide by that. Being the Governor of Alaska gives you an incredible opportunity to advocate for your son and the greater disability community. To often those in government really don’t understand why changes are required. You will be in that unique position to not only understand the needs of the disability community better than most but more importantly, you actually have a position that gives you the ability to affect change with your access so many of us could only hope for.

Of course it’s only conjecture at this point that Trig has down syndrome but your statement makes it clear he has some special needs.

Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed.

We certainly wish you all the best and hope you’ll lean on those of us who have already started on our journey in Holland for the love and support we will gladly give. Trig, you are already blessed, little angel, to have parents who recognize what a privilege they have in being your parents. I’m pretty sure your parents are right that you have great potential to make the world a better place. For now, just rest easy knowing you will be loved by not only your family but the greater family you’ve just become a part of and don’t even know it yet.

Much love to you and your family.

picture courtesy of KTUU TV Alaska

Thanks to Michelle to pointing out this beauty’s birth!

I was pointed to Pamela Wilson’s post at Bella Online. In this post on the passing of Melissa Riggio (daughter of Barnes and Noble CEO Steve Riggio) I mention this because I was moved by the idea and I think some of you might be interested in participating in the tribute as well…

Some family and affiliate groups are contacting their local Barnes and Noble stores to request space for a display of sympathy cards and notes in gratitude and sympathy for Melissa Riggio, daughter and sister in the family of the Barnes & Nobel CEO, Steve Riggio.  

 The article at Bella Online has links to other articles and the local obituaries for those who may want to express their condolences online.