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
mtruitt@mail.nih.gov

Barbara Biesecker
Primary Investigator, JHU/NHGRI Genetic Counseling Training Program
(301) 496-3979
barbarab@mail.nih.gov

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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!

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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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I grew up blessed to have a fairly extensive family network. As with any family some were closer than other for a variety of reasons usually having to do with geography. One of my fonder early memories was visiting cousins in Ayer, Massachusetts - especially Cousin Edith. I was pretty young, I kind of knew something was “different” but I couldn’t put my finger on it and to be honest - she was fun….I just didn’t care! She always was happy and always interested in what *I* had to say or show off. I was always incredibly impressed that I had an olympic athelete in the family - one who had medaled in swimming no less! I thought she was amazingly cool! It was only years later that I understood that Edith was different because she had “Down Syndrome” and that the olympics she had competed in was Special Olympics. It didn’t make Edith any less cool however - in some ways it was more cool that despite any disability she lived this totally cool life and had such success and accomplishment.

Today, I received a note from Edith’s sister Ruth telling me that Edith had passed. I haven’t seen Edith or Ruth in years but I remember visits there with such fondness and joy that I wanted to share the wonderful eulogy that Ruth has written which made me even more happy to be able to say she touched my life and happier to know my Aunt Harriet and Uncle Richard were such groundbreakers - which I guess I should have known but in my family the fact that Edith stayed at home just never seemed anything other than normal to me. I like to think that this early exposure to Edith and my families treatment and incorporation of Edith into our lives gave me a better ability to make the decisions I have about Katherine. For this and so many other things I can’t begin to enumerate I am so grateful to Edith, for letting me just love her for her, to Aunt Harriet for having worked so hard to make sure that Edith had as “normal” a life as Ruth or Frank and to Ruth and Frank for being caring siblings to continued to care for Edith long after Aunt Harriet and Uncle Richard were gone. I hope to one day speak to you so that I can take lessons from you to help Katherine’s siblings long term.

EDITH LOUISE MAXANT

August 12, 1944  - July 24, 2008

On August 12th 1944, a daughter, Edith Louise Maxant was born to Capt. Richard C. Maxant and Harriett (Henn) Maxant.  After taking her to several specialists, they followed the best advice, “Just take her home and love her.”   So, Edith Maxant became one of the few Down Syndrome babies to grow up at home and one of the even fewer children that became part of the community. Her Mom, Harriett, also became an advocate for children with disabilities. She took Edith to parents of special needs children and encouraged them to let their children live at home and be active in the community.

Edith had all the opportunities to do everything a “normal” child could do. She took swimming lessons at Sandy Pond and eventually overcame her fear of deep water and would swim across the pond and back!  Edith took ballet, tap and baton twirling lessons from Mrs. Desmond, participating in the recitals and never missing a step.

Edith was upset that her younger sibling got to go to school because it was “My Turn!” after her older sibling started school. Ayer had no special needs classes, so her Mother found Rollstone School in Fitchburg and drove her over every morning and picked her up every afternoon. The teachers at Rollstone School all loved Edith. She organized the kids on the playground and taught them how to swing a jump rope, how to play hopscotch and other games which she had played at home with her friends and siblings.  Harriett soon discovered Edith could take the train to Fitchburg every morning. The conductors all watched out for her and loved her cheerful personality. A taxi picked her up at the train station and took her to school and Harriett picked her up in the afternoon.  When Ayer started its special education classes at Page-Hilltop, Edith was one of the first students.

Edith had an infectious personality and a beautiful smile.  She always loved everyone, she seldom forgot a name or face. She did not take offense when people shied away from her, but tried to win them over with her gracious comments and sweet personality. Even as a child she did not let unkind remarks faze her. She would say, “It’s OK, they don’t know better.”

As programs for the handicapped grew, Edith grew right along with them.  She loved to jitterbug and wanted to attend every single sock hop put on by the Association of Retarded Citizens. (ARC)  She also loved to bowl and her Mom would take her every week to bowling at Mason’s bowling alley in Fitchburg.  Edith participated in the Special Olympics and won medals in both bowling and swimming. She would walk downtown Ayer to show her medals to everyone.

Edith was a member of the Federated Church and attended Sunday School and Vacation Bible School. She had perfect attendance medals for almost every year. Edith learned how to read and write and was never as happy as when reading her Bible. She often attended the services at other churches when people were willing to give her rides.

Everyone who knew Edith was touched by her life. She taught people how normal it is to love and interact with others regardless of handicaps. Edith stayed young, and as her playmates outgrew playing with her, she took to riding her bike and walking around town. People in Ayer grew accustomed to seeing her and would often offer her a ride home.  People learned that Edith was just…Edith…and they accepted her for herself; a loving, kind, gracious person who would not forget you and who would always try to help others

Donations can be made to: the ARC, (Fitchburg); the Special Olympics; or the Gideons.

Edith leaves behind: her brother, Frank Maxant, and her sister, Ruth Maxant-Schulz, both of Ayer; niece, Diana Simon of Bethesda MD and her two boys, Jeremy and Gabriel; niece, Christina Andres of McKinney Tx;, her daughter, Payten; niece,  Amanda Schulz of Ayer; nephews, Curtis Schulz of Ayer, and David Schulz of Columbus Ohio; and many cousins.

God Bless and God Rest Edith.

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