Special People Parenting Special Kids

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:

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 icon sad Tropic Thunder producers fail to act   Boycott called for

Hate Speech and ‘Tropic Thunder’

Aug 9, 2008 Author: Kyron | Filed under: Advocacy, Disability Groups, General

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:

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.

Edith Maxant – beloved cousin

Jul 30, 2008 Author: Kyron | Filed under: General

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.rip3 Edith Maxant   beloved cousin

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.

Just In Case

Jul 21, 2008 Author: Kyron | Filed under: General, Medical, Strategies

I just spent the past week at Childrens Healthcare of Atlanta – Egleston on 5West (big shoutout to the great staff there!!) Katherine developed what we believe to be acute (rather than chronic) pancreatitis. And if that wasn’t enough to cause this poor kid enough insane pain to break my heart she also had a greaCHOA 2 Just In Caset case of fecal impaction. Well I guess the good thing is that we got a two for one stay – got completely cleaned out while we dealt with the pancreatitis.

It was the second time I’ve really had to deal with hospitalization for Katherine since Donovan was born. It hasn’t gotten easier. As awful as it was I know full well I’m really lucky. I have both sets of grandparents who live within 10 or so miles of us and are

  1. retired (or mostly so)
  2. available (with rare exception)
  3. very involved with their grandchildren

My father and stepmother were with me as we took Katherine to the Emergency Room. Philip’s parents took over picking Donovan up from school. Of course that was only the first obstacle – we had a full week of obstacles while we juggled getting my husband to work, Donovan to and from school all while trying to maintain some sense of normalcy for him and someone to come up and relieve me once a day for an hour or so in an effort to make sure I wasn’t headed for a rubber room by the time this whole week was over. All things considered the week went pretty smoothly but it could have easily been disastrous!

At age 16 my parents left me at night when I was in the hospital. My mom was there all day with me but leaving me at 8pm and returning at 9am or so the following morning really wasn’t a problem. This is not even a consideration with Katherine. Katherine got freaked out every time I walked across the hall to the family kitchen to grab a cup of coffee let alone what would have happened if I had left her overnight and yet without my family I’m not sure what the heck would I have done!

We were in the best possible place, not only for Katherine’s medical care (a top rated children’s hospital in smack-dab in the middle of Emory University) but a children’s hospital is only dealing with children and is set up to give a lot of support to parents and the small patients alike. That being said I’m certain (because I read the handbook) that Donovan would not have been welcome to spend the night although he was welcome to visit during visiting hours. Realistically with all that was going on with Katherine physically however (and trust me when I tell you I’m doing you a favor by sparing you the gory details) having a toddler (who is making up for lost time with regards to the terrible twos) in the middle of all that was going on there was not going to be in any way desirable. I consider myself pretty good at handling both kids at the same time but even I didn’t want any part of that action!

About 2 days in as I was figuring out how Donovan was going to be picked up by one set of grandparents and transferred to the other because of various scheduling issues it suddenly occurred to me that there had been a time in my life where this whole thing would have been impossible. How do parents who have no family support or are single parents do it all under these circumstances? It suddenly dawned on me that eventually I wasn’t going to be so lucky. My parents as well as Philip’s are getting older and at some point I could very well be on my own in having to handle a situation just like we had this past week. Of course I hope it’s not going to be for a very long time, but I can’t really count on that. Because of this I need to figure out some basic kind of plan to have in place just in case. Realistically it’s probably not quite as important as all the legal plans, financial plans and the life plan or letter of intent….but it could go a long way to increasing my peace of mind to have something written out – Just In Case.

I went to therapy several years ago – things had just gotten catastrophic in my mind – work, home, everything. I couldn’t function except in the most basic of ways. My therapist – who I wish I could clone for the world he’s just that good – said ok so what’s the absolutely worst case scenario? I described it in vivid detail. He said ok. So now we’re going to write down what you’re going to do in that worst case scenario. He and I came up with the plan and it brought me some real comfort. I carried that plan around with me for quite some time. I was certain I would need to call on it at any moment. While I haven’t carried it around for the past year, it still sits in my jewelry box – Just In Case

Let’s just hope the Just In Case never is. Meanwhile I’ll continue to get my plan in place icon smile Just In Case

What right to flight?

Jun 26, 2008 Author: Kyron | Filed under: Advocacy, Autism, General, Television

As Good Morning America played in the background of our morning chaos yesterday, I quickly hit the record button on the TiVo. A parent and her toddler who is autistic were forced off an American Airlines flight. The mother took a train up to New York City to appear on the show.ameagle What right to flight?

I’ve watched it all now and let me tell you how much I hate these stories. Unless you’re there it’s always hard to judge in hindsight. However I still felt it was worth putting out there. I feel for this mother!! I have been on a plane with both my daughter who has some truly autistic behaviors (not that the paranoia from Katherine’s psychosis doesn’t make getting thru airport security bad enough). Quite frankly it became so difficult we stopped flying with her and at the time we made that decision she was flying once a month from Georgia to New Jersey to visit with her father. I know that this decision wound up working for us because her father came to recognize the real peril of her behaviors and the potential for real problems. Now he comes here instead.

I’ve also flown without my children but had other peoples children on the plane. Some of these children were without question disruptive, chaotic, trying. It was mayhem. Do I as a fellow passenger wish that the child would have been more quiet, more under control? Sure! Please – I don’t want 4-5 hours of my own child in chaos let alone one I don’t know. Reality though?? Please. The reality is that with airlines today I’d like to act like some of those kids were. The difference is my decades of additional experience and my brain’s ability to exhibit impulse control. Now take away the decades of experience and the fact that even the most “normal” child has impulse control issues because their brain is not fully formed.

What is it these days where adults are so self-absorbed that they can’t handle some chaos or turn it around and revel in a child who is only acting out like we wish we could? Where is a helping hand to assist a mom who has a child who’s boisterous or fidgety because you have all been waiting on that plane or in the terminal for what seems like forever?

I watched the mom – Janice Farrell calm her son on TV. It’s fairly obvious that she has the ability to control the child given the right environment. Certainly the one described by Ms. Farrell (which you can see by clicking here) was anything but the right environment for a child with any special needs, let alone autism. I am guessing that Ms. Farrell could have done as much to calm her son on this flight had she been met by understanding rather than judgement. The airline – American – released a statement saying

“The child had been crying and screaming uncontrollably, to the point where the child’s well being was in question,” American Airlines, the parent company of American Eagle, said in a statement. “Though, ultimately, the parent’s violation of FAA regulations was the cause for removal, both situations contributed to an uncomfortable and potentially unsafe atmosphere for our passengers and crew.”

Ms. Farrell says that she did comply and on that issue all I can say is who knows? I know she says she allowed them to stow the bag. Let me put on the record that I personally don’t believe for a minute that this was the issue. I’m guessing that like many others, that flight attendant wasn’t in the mood to deal with a challenging child. I am guessing that to top the poor attitude that the flight attendant exacerbated an already difficult situation by her lack of understanding how her tugging at the seatbelt and tone of voice were only adding fuel to the fire. I’m guessing that had she been given the opportunity she could have calmed her son just as she did on live tv…..without a bunch of nasty, judgmental people harping on her and her small child. No toddler will do well under those circumstances let alone one that has problems interpreting social signals and sensory input!

The reality is that the airline does need to make sure that it’s safe for everyone to travel however it just seems to me that these things just didn’t happen before 9/11 and now I seem to see them all over the place. Everyone had a little more patience because the whole airport thing was a whole lot less grueling. The reality is at worst I would guess that this child posed a nuisance and a headache factor for some employees and passengers who were either basically intolerant or in a particularly bad mood that day. I get needing to keep people safe from terrorists, not from terrorized 2 year olds. And face it – that child was terrorized. Even if I assume that Ms. Farrell’s view is biased – without question the manner in which we are now required to travel with increased security it torturous for even the most seasoned traveler.

Seems to me that human decency requires some patience with the youngest of us. We need to go back to viewing our world as a larger family of whom we need to be supportive and caring of. Let’s face it….turning the plane around, going back to the gate took as much time as allowing this mother the space to help her child calm down. I don’t know why this woman and her child chose to travel via air. I don’t even care. It seems that disabilities have to be accommodated – and American Airlines blew it on this call not once but twice. Their first opportunity was blown by the flight crew – pilot included. The second was from American corporate who decided than rather to suggest that a policy of Ancora Imparo (thank you Dr. Rick Rader of Exceptional Parent magazine for introducing me to that term) which means ‘I am still learning’ in which maybe they took some accountability for their employees behavior and remembered we all are continually learning and we need to allow new experiences to give us growth rather than duck behind the blame game. What an opportunity they missed by not acknowledging they had something they could learn from this rather than casting blame away from them and their employees.

Summertime Planning

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

idea Summertime Planning

I was checking in on some of my favorite blogs today in my spare time (yea right) and found this clever tip that I just had to share with all of you.

I thought this was a brilliant idea to give visual cues to our kids on changes in routine! Why didn’t I think of this!!?? Please take a moment to click here and read this short but clever idea!

Glasses for Children with Down Syndrome

Jun 20, 2008 Author: Kyron | Filed under: Diagnoses, Medical, Resources, Services

I came across this on one of my listserv’s and thought it was useful information for some of you.SpecsBanner Glasses for Children with Down Syndrome

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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