thespecialparent.comSpecial People Parenting Special Kids

This article was submitted to me and unfortunately I have been sidetracked. That seems to happen alot these days. Life has a way of doing that to so many of us.  While this article talks specifically about Down Syndrome research, there is room to be concerned about funding for many issues regarding special needs children. Hopefully this will get all of us thinking about reaching out and speaking out about prioritizing spending in Washington so those who cannot speak for themselves.

I recently went to a talk by Dr. William Mobley, a Stanford Down syndrome researcher, and became aware of the recent breakthroughs in Down syndrome research that could lead to treatments to improve cognition, memory, speech and learning and reduce the effects of Alzheimer’s disease. I was very excited about the research, but was saddened to learn about the reduction in funds that the federal government is putting towards this research. In 2004, the National Institutes of Health (NIH) funded $23 million in Down syndrome research, whereas by 2008, NIH funding had decreased to $17 million, a decrease of more than 25%. The $17 million in NIH funding for Down syndrome research in 2008 translated to approximately $42 per person with Down syndrome. Other conditions receive significantly more. See www.dsrtf.org — The Down Syndrome Research and Treatment Foundation (DSRTF) — for more information about Down syndrome research and to sign up (lower right-hand corner) to receive newsletters and keep up with new research developments and breakthroughs.

Having been amazed at how close Dr. Mobley is to turning his research into a potential treatment for our loved ones (he’s found 2 drugs that work in mouse models of Down syndrome – one that improves cognition and one that reduces the effects of Alzheimer’s), I wanted to do all I could to move his and others’ research forward. Dr. Mobley said we could do 2 things to help. One is to donate to DSRTF (www.dsrtf.org), which is where he gets much of his funding, with more than $3 million in DSRTF research funding given to Stanford since 2004. The other is to write to our Congress people to ask them to join the Down Syndrome Caucus and to fund Down syndrome research at a higher level. Since then, I’ve done both. Here’s a generic form of the letter I wrote to my Congress people that my friends sent to their Congress people. Please feel free to use any or all of this letter to write to your Congress people and add a personal touch by talking about your loved one with Down syndrome. Go to votesmart.org and type in your zip code to find them. If you click on their name, you can find a link to their web mail address, click on it, and then cut and paste your letter into the form. You can also write directly to President Obama by going to the following website: www.whitehouse.gov/contact.

If we all work together, we can be part of the breakthrough.

<date>

Your name

Your address line 1

Your address line 2

Senator Dianne Feinstein

331 Hart Senate Office Building
Washington, DC 20510

Dear Senator Feinstein,

As the <parents/aunt/uncle/friend> of a child with Down syndrome, we respectfully ask that the government fund Down syndrome research at a higher level. Due to recent breakthroughs in genetics and Down syndrome research at facilities such as Stanford University, a treatment appears imminent. If individuals with Down syndrome can live more independent lives, the government could save much of the 6 billion dollars spent annually for people with Down syndrome, and these people could become tax-paying citizens. The long-term benefit to our society is huge. The initial, up-front cost of the research could, in the end, save taxpayer dollars.

My name is <name> and I am the <mother/father/aunt/uncle/friend> of < person’s name>, < info about the person – for ex., a sweet, playful, happy 2-year-old boy with Down syndrome.> <mention specifics about the person – for ex., His older brother and sister are so proud of him whenever he accomplishes something that comes naturally to others. They cheered him when he signed his first word, learned to crawl and took his first steps. We are all better people for having him in our lives.>

However, <my husband and I> worry about what his future will be like. Will he be able to live independently, or, will he need to live on government aid all of his life? We’re learning about new research developments in the field of Down syndrome and are very hopeful that a treatment will become available to our son within his lifetime. <My husband and I> thank you for the opportunity that early education programs and mainstreaming has given and will continue to give to our son. If the new research developments can be turned into drug treatments, and his cognition improves by a mere 10-20% beyond what it would have been, he could support himself financially when he grows up and he won’t need to live on government assistance as an adult.

People with Down syndrome are living longer lives, many into their 60s and 70s, but nearly all will develop Alzheimer like symptoms by the time they are in their 40s. A link has been made between a gene associated with Down syndrome cognitive issues and the cognitive issues associated with Alzheimer’s disease. The research being developed for Down syndrome has the potential to delay the onset of Alzheimer’s, not only in people with Down syndrome, but in the general population as well.

According to Stanford Down syndrome researcher, Dr. William Mobley, “brain function can be modified, in both children and adults, and we are learning how such changes occur. Therefore, today, we can boldly predict that Down syndrome is not too complex to understand, it is not too difficult to treat, and it is not too late to treat.” Dr. Mobley is testing a couple of new drugs on mice. These drugs sound very promising, but he needs funds so he can turn his research into treatments for people with Down syndrome and other cognitive disabilities as well as people with Alzheimer’s.

I think Dr. Mobley said it best when he said, “During times of tight budgets, it may be tempting to de-emphasize research. And yet, research – particularly medical research – is the best investment we can make in health care for our country. If we are concerned about cutting future health care costs, we must look for ways to prevent those costs from occurring.”

Please help by joining the Congressional Down Syndrome Caucus and funding the research.

Sincerely,

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…that would be as wonderful as the article I have to share with you today. I feel honored to “know” the woman who expressed everything I thought when I heard about this gaffe that President Obama made. Honestly, right now I couldn’t have begun to do it the justice Johanna has. I feel blessed to count her among my “friends” – someone I’ve never met but know in a heartbeat I could reach out to. It’s what makes us special parents even more special. An extended family as it were. I’d like to share this small piece by one of our own, our extended family. Johanna Mattern Allen.

Rethink your outlook on the disabled

By Johanna Mattern Allen

Posted: Mar. 23, 2009

Words cannot begin to express how disappointing it was to hear President Barack Obama’s Special Olympics gaffe on “The Tonight Show with Jay Leno” on Thursday.

But it’s not just Obama who needs to take a hard look at this. His remark on one of the most popular television shows in America is indicative of a culture that is all too comfortable disparaging individuals with a disability – I might add, individuals who never would disparage him or anyone.

Since he so decidedly put his foot in his mouth, here’s my four-point plan for the president to make reparations for the cultural damage he caused last week:
* Pony up beaucoup bucks for the Special Olympics cause.

* Create a cabinet position for disability now. There currently isn’t even a policy adviser for disability since Kareem Dale moved to an arts leadership position. With a disability population in the United States of 50 million-plus, and growing especially as our population ages, we need disability experts to work alongside our president.

* Create positions for self-advocates in the White House so the president and the world never forget about people who have to work harder than he ever can dream of working to achieve what they do.

* Urge every college, university and high school in America to teach disability history/cultural competency.

Obama isn’t the only smart (read: well-rounded intellectual) person I know who knows jack about disability. And not all of us are as lucky as me to have my son, Jack (who has Down syndrome), for a teacher.

It’s totally cool to not know, but do something about it instead of getting defensive, making excuses or ignoring it. Here’s my simple, pain-free, four-point plan for the rest of us:

* Read some disability history. Read Paul K. Longmore.

* When interacting with an individual with a disability, presume competence. Always. Just because someone moves, communicates, sits, eats, breathes, walks, hears, sees, thinks or problem-solves differently, or doesn’t do any of these things, he or she still experiences life, contributes to the world, has feelings and thrives and depends on relationships with others.

* Don’t defend offensive language. Just because it comfortably rolls off one’s tongue in mixed company or it’s self-deprecating or we’ve always said it, that doesn’t mean it’s right. The next time you think “we’re being too sensitive,” think about how you sound clinging to an outdated term and defending it after the minority group being maligned has asked you to stop. If you need to be self-deprecating, use a thesaurus. Find the word or phrase you like and practice it before you need it – that’s how habits get broken. Language influences culture, culture influences policy and, in my son’s case, he can hear you (and so can I).

* Give us a break. No really. Take the time to be with a parent of a child with a disability or an individual with a disability. Encourage your children to have a play date with a child with a disability. Challenge the idea of why you might not have a friend with a disability. Reach out in friendship to those of us who are most marginalized. The great secret about disability is that each one of us is only a heartbeat away from it at all times.

The great tragedy of past generations is that there have been unspoken divides between the cultures of the disabled and those who are not. In the culture of disability, we’re accustomed to cheering on individuals with great challenges to help them overcome great obstacles and odds.

We in the disability community know those of you who aren’t disabled are able to learn more and know you are capable of using inclusive language and joining us in a 21st-century way of thinking.

Johanna Mattern Allen lives in Milwaukee. March 31 is the Special Olympics’ “Spread the Word to End the Word Day,” a national day of awareness calling for America to stop and reconsider the use of the “r” word: retard/ed. Go to www.r-word.org

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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.

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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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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

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Oh it’s being covered everywhere but honestly my head has been buried in the sand dealing with the first week of school here. (yea – we end early too) so I’ve just been reading along and if you haven’t catch up by clicking on these links here:

• Tropic Thunder – Once Upon a Time…There was a Retard
• Sorry Mr. Stiller you’ve crossed the line
• Never go full Retard
• Disability groups organize
• Just the facts about Tropic Thunder

As of this writing my understanding is that the viewing Dreamworks promised isn’t going to happen until the 11th hour on Monday just before this movie premieres. I think Patricia Bauer has done an amazing job of covering this issue so I’m not going to add much more except that the statement below pretty well says what I’d like Ben Stiller, Jack Black and Robert Downey Jr to know. I want to believe these are good although misguided individuals who don’t get the greater harm they are doing to our loved ones. Hopefully they will read the following and reach out to learn more

THE R-WORD ISN’T JUST HURTFUL,
IT’S HATE SPEECH.

WHAT IS HATE SPEECH?

Hate speech occurs when a majority group freely makes jokes about a minority group including negative stereotypes and negative images, not just language. It is commonly seen as harmless by the majority, but it sets the stage for more severe outlets for prejudice, harm and abuse.

PEOPLE WITH DEVELOPMENTAL AND INTELLECTUAL DISABILITIES ARE AT GREATER RISK OF VIOLENCE.

- 1 in 3 children with disabilities are victims of some form of abuse, sexual abuse, or neglect. (Sullivan & Knutson, 2000).

- Individuals with developmental disabilities are 4 to 10 more times more likely to be victims of a crime than people without disabilities (Sobsey, et al., 1995).

- Children with developmental disabilities are at twice the risk of physical and sexual abuse compared to children without disabilities (Crosse et. al., 1993).

PEOPLE WITH DEVELOPMENTAL AND INTELLECTUAL DISABILITIES ARE DISENFRANCHISED FROM JUSTICE.

- Many people with intellectual disabilities are not able to articulate the abuse they’ve sustained.

- Many victims with intellectual disabilities are not perceived as credible witnesses.

- Abuse often occurs as part of name calling, bullying, hazing, or other targeted attacks based on disability status. THIS IS A HATE CRIME.

ENDING THE USE OF THE R-WORD IS MORE THAN A “POLITICALLY CORRECT” NOTION.

- “Retard” and “retarded” are derogatory and dehumanizing terms– on par with the N-word when used to describe African Americans, and various hateful terms used to describe members of the Jewish, gay and lesbian and other minority communities.

- Self-advocates with intellectual disability have clearly stated that negative language leads to harmful action, discrimination, abuse, negative stereotypes, disenfranchisement, and violence.

SHOULDN’T PEOPLE WITH INTELLECTUAL DISABILITY JUST LIGHTEN UP? IT’S A JOKE!

- NO! People with intellectual disabilities have a history of institutionalization, genocide, forced sterilization, segregation, and being regarded as ‘less than human.’

- More than any other group, they experience record unemployment, significant physical, mental and sexual abuse, and limited rights.

- This discrimination and victimization continues, in large part, due to antiquated, discriminatory portrayals in the media and pervasive prejudice.

WHAT’S FUNNY ABOUT THAT?

As my mom used to say – WORDS HAVE MEANING – BE SURE YOU MEAN WHAT YOU SAY.

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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!!

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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!

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…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.

‘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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I am SURE you are saying are you kidding me with the Miss USA Pageant as a TiVo alert! I however think all of you with little girls may be very happy to have your daughter see Miss Iowa – Abbey Nicole Curran.  She’s a beautiful, talented, intelligent, self-possessed, young lady who is competing for the Miss USA title tonight. Why am I so interested in Miss Iowa when I am a Georgia resident and  Jersey born well because Miss Iowa has cerebral palsy.Ms. Curran says she wants the judges to know that she is living her dream competing in the Miss USA pageant. She says she also feels she’s not doing it just for herself however but for all people with disabilities hopefully teaching others it’s ok to take risks and that you never know until you try.It’s being carried on NBC tonight so check your local listings. GO ABBEY! 

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