TiVo® Alert Autism Every Day on Sundance Channel

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Posted by Kyron | Posted in Autism, Television | Posted on 31-03-2008

Autism Every Day on Sundance Channel:

The Sundance Channel will present the U.S. television premiere of Lauren Thierry’s documentary Autism Every Day on Wednesday, April 2 at 8 p.m. ET (which is World Autism Awareness Day). The film documents the day in the lives of eight families struggling to raise children with autism.

I hope that many people take the opportunity to see this

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The Sunday Paper for March 30, 2008…

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Posted by Kyron | Posted in Advocacy, Autism, Diagnoses, General, Sunday Paper, Television | Posted on 30-03-2008

…and a cup of coffee

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


Students with needs discover their talents

Program in Mamaroneck, NY helps teens with a variety of special needs plan for their futures to ensure they have the basic life skills they will need after leaving school

Students raising money to help Gilbert teacher
Students are fundraising to help special education teacher Juan Reyes offset the approximately $600-700 annually he goes out of pocket to provide for his students with special needs.

Synagogue to hold service for special needs children

Syangogue holds service for special needs children and their family. Serving West San Fernando and Conejo valleys

Disability Advocates want name change for Missouri state agency

Advocates lobbied at the Missouri state capital to have the words mental retardation dropped from the state agency name

US Airways helps special needs dogs

US Airways is helping to train service dogs with their puppies in flight program

Family shocked by MD’s speed over 11 year old
Muscular Dystrophy’s impact on an 11 year old boy and his family

Three documentaries put faces on autism

Realistic portrayals of autism hit the big screen with Autism Every Day, Autism: The Musical and Her name is Sabine

Little Horizons Produces Early Childhood Education DVDs for special needs children

Fun with the ABC’s allows special needs children and able bodied children to have fun side by side while learning their ABC’s

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Just a normal teenager who happens to have an extra chromosome

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Posted by Kyron | Posted in Disability Groups, Education, Inspiriation | Posted on 29-03-2008

It’s amazing that I got this article sent to me by my friend Johanna. It ties right into a conversation I was having with Katherine – ok well kinda. The conversation was had but since Katherine doesn’t have Down Syndrome it wasn’t exactly the same. What I loved about this article was it was so open and honest and from a teenagers perspective about how very much alike we all really are. Let’s face it – we’ve all felt that way. Heck half my teenage years were about struggling with the feeling of being different when in reality what was so different about me wasn’t different at all. Unfortunately, teens thrive on making what is a trivial difference and picking it apart till the victim bleeds. Metaphorically speaking of course.

It’s one of the things I am panicked by about sending Katherine to High School next year. Panicked that someone, in an effort to build their own self-esteem up, will feel compelled to do it by using my child’s as their stepping stool. Maybe if all teens were required to read what Melissa wrote they would learn her very poignant message:

Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

Please take time to read the whole article which I am both linking to as well as posting below
Melissa - National Geographic Kids

When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.

My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)

When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)

When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.

I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.

A Lot Like You

Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!

Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!

But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.

Dream Job: Singer

I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, And this singer my dad knows recorded some of my poems as singles.

Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.

It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.

See Me
But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.

Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.

I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you.

Listen to “The Ring”, the song that Melissa wrote!

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Outside of the comfort zone

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Posted by Kyron | Posted in Advocacy, Education, Strategies | Posted on 27-03-2008

Last night I finally got to watch my TIVO’d  recap and results show for Dancing with the Stars (have to make sure Marlee gets through to the next round) and found that what I took from the show wasn’t really anything to do with Marlee although I’m sure she could have said the same thing. It was from Monica Seles who beautiful and talented as she is – God has not gifted her with great abilities in dance. And hey – that’s ok.  She readily acknowledges that this experience has fallen well outside of her comfort zone on so many levels.

A good lesson for us all and one that Marlee has been teaching us with her stint and many of Monica’s fans have learned hopefully as well.

There are things that constantly stretch my comfort levels with Katherine as she grows into a young woman as opposed to the baby I am too often caught up in thinking of her as. Even so there are always things I have to tackle in the short term – things that most assuredly mean that I have to see her as the big girl she is – in the immediate, while remembering that I will still need to adapt big people things to a level at which she can comprehend and cope effectively with so many challenges I still wish I could protect her from for many years yet.

But as so often happens time is marching on. Honestly it’s marching faster than I’d care to see it go and faster than I can sometimes keep up with, especially on crutches (yes I am currently on crutches). Frankly we are so far outside of my comfort zone as I prepare to prepare Katherine for things that are likely outside of her comfort zone, I hope and pray I’m up to the challenge. While I am unlikely to make them all as palatable as dancing, the hope is  that I can make growing in to the extraordinary young woman I know she can be as exciting, enriching, and as smooth a process as humanly possible while minimizing the inevitable pain along the way.

While this isn’t necessarily a task unique to parenting a special needs for me at least I feel like for a child with developmental delays it presents unique challenges and struggles. Obviously Katherine as a 16 year old doesn’t take in things like a 16 year old does and for me the challenge of interpreting those things into 6 year old speak is not always so easy especially when they are truly “grown up topics”. All of this is transitioning Katherine into the more adult world she will spend the remainder of her lifetime in and will need this information and the skills we will be building to cope in a world well beyond her in many ways and in other ways the world could use quite a few more Katherine’s.

So as Katherine and I travel outside our respective comfort zones over the next few weeks and months I’ll do my best to share the ups and downs and the things we’ve learned along the way.

On a side note:

I appreciate you bearing with me the past couple of days of absence. One of these many changes that I will have to be teaching Katherine is about the loss of people you love. I was dealing with my own personal feelings about this the past few days and how I’m going to help Katherine as well as myself through this journey and I appreciate your understanding of my unexpected absence.

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8 hour meals….(*apologies to Rachael Ray) Honey Mustard Pork Tenderloin

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Posted by Kyron | Posted in Recipes | Posted on 23-03-2008

As the parent of a special needs child I am frequently out and on the road at doctors appointments, IEP meetings and after school special activities. Rachael Ray may be the queen of the 30 minute meal – I’ve become the queen of the 8 hour meal! The crock pot isCrock Pot my hero! I throw a bunch of ingredients in the crockpot first thing in the morning, set the time I want it to cook (typically 8-10 hours) and off I go to only open it up in time to serve dinner to the hungry hordes. Weekly on Sundays I will share some of our family’s favorites.

Originally published by Diana Rattray Southernfood.about.com Honey Mustard Pork Tenderloin


INGREDIENTS:

  • 2 pork tenderloins, about 1 pound each
  • salt and pepper
  • 1 medium clove garlic, minced (original recipe calls for 1 small clove)
  • 4 tablespoons grainy Dijon mustard or country-style
  • 2 tablespoons honey
  • 2 tablespoons brown sugar
  • 1 tablespoon cider vinegar or balsamic vinegar (we prefer cider)
  • 1/2 teaspoon dried leaf thyme, crumbled
  • 1 tablespoon cornstarch
  • 1 tablespoon cold water

PREPARATION:

  • Grease the slow cooker with a little oil or use a cooking bag to make cleanup easier.
  • Wash and trim the pork and pat dry; sprinkle lightly with salt and pepper. Place pork in the slow cooker. Combine garlic, mustard, honey, brown sugar, vinegar, and thyme; pour over the pork. Turn pork to coat thoroughly.
  • Cover and cook on LOW for 7 to 9 hours, or on HIGH for 3 1/2 to 4 1/2 hours.
  • Remove pork to a plate, cover with foil, and keep warm. Pour the juices into a saucepan and bring to a boil over medium heat. Simmer for 8 to 10 minutes, or until reduced by about one-third. Combine the cornstarch and cold water; whisk into the reduced juices and cook for 1 minute longer. Serve pork sliced with the thickened juices.

Serves 6

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The Sunday Paper for March 23, 2008…

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Posted by Kyron | Posted in Advocacy, Articles, Disability Groups, Education, Inspiriation, Sunday Paper, Television | Posted on 23-03-2008

…and a cup of coffee

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


Trip planned to protest cuts to special needs program
An Alabama woman is planning a trip to the state capital on Wednesday to protest proposed cuts to the state’s Early Intervention Program.

Special needs music box artists share their gifts
Art Access is a place for people with differing abilities to come together and grow creatively by learning about art and each other.

Disability no barrier for Gaither Athlete

High School sophomore Casey Garber says he’s not trying to prove anything by competing in track and field just because he has cerebral palsy.

Program targets kids with special needs
Pennsylvania Parks and Recreation program has started two programs for children with special needs and their parents

Bid to turn Castlehyde Hotel into care centre for special needs kids
Bid to take a hotel closed in 2005 and turn it into a day care center for children with special needs.

Advocate brings disability awareness to students
Kokomo students learn about difficulties people with disabilities face in everyday life in an event that Russ Ragland has brought to the High School for the past eight years.

Prime Time Disability
While its becoming more common to see people with disabilities on primetime television, unfortunately it hasn’t broken it’s habit of using able-bodied actors to fill the roles.

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TiVo® Alert Extreme Makeover Home Edition – The Gaudet family

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

Ty Pennington | ABC | Extreme Makeover Home Edition

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

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

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Documentary of a Strong Love

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Posted by Kyron | Posted in General, Inspiriation | Posted on 22-03-2008

Strong Love | Jon Shapiro and Holly James

I wanted to let you know about Strong Love, a new film a woman named Bonnie Burt produced about a couple both born with Down syndrome who decide to marry. I thought it might be of interest to all of you. I thought it was particularly appropriate given that yesterday was World Down Syndrome Day.

A recent review from the Down Syndrome News:
“Some scenes will make you cry, others will make you laugh. All in all, it’s a picture of life full of surprises, challenges and joy.”

Bonnie has posted a short excerpt from the film of Holly and Jon practicing their wedding vows if you are interested in previewing it. Click here to view it on YouTube.

From the website:

Strong Love is the story of world-class weight lifter Jon Shapiro and his childhood sweetheart Holly James, both of whom were born with Down syndrome. This documentary follows the couple over the course of three years, starting with their decision to get married. Their challenges, their triumphs, and their complex, sometimes surprising relationships with family and friends are at the heart of this inspiring film.

“Strong Love” is next scheduled to play at the Sprout Film Festival in NYC on Saturday May 10, 2008, at 11 am. Click here for more information about this screening.

For more information and purchasing this video you can visit Bonnie Burt at her website.

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World Down Syndrome Day

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Posted by Kyron | Posted in Advocacy, Diagnoses, Disability Groups, News | Posted on 21-03-2008

Today is World Down Syndrome Day. Did you know that today was specifically chosen because Down Syndrome (trisomy 21) is caused by a triplication (3) of the 21st chromosome (21) hence 3/21. Brilliantly subtle if you ask me. I learned this by reading an article written by an Australian Senator Sue Boyce. As the mother of an adult daughter with Down Syndrome it’s understandable why this is an day of interest to her. It is a well written piece worth a read. Please check it out by clicking here.

Unfortunately it is true that for every well informed individual in power, there must be someone in another position of power who attempts to undo that goodness and intelligence with small mindedness. Apparently University of North Carolina’s Professor Albert Harris is that opposite force to Senator Boyce’s sound voice. I am guessing you are all wondering on this special occasion remembering Down Syndrome why I would include an article such as this. It’s just this very reason that I’m including it. You need to read it as much as you needed to read the one by Senator Boyce. Click here and read it.

We’ve come a long way. It’s not that many years ago where a World Down Syndrome Day would never have stood a chance. For all that progress, we have an incredibly long way to go. Make no mistake that just like Keith P. Jones said – Disability is the final frontier in civil rights, the last great struggle. Professor Albert Harris’ irresponsible statements in a science class prove that very point. Celebrating days like World Down Syndrome Day to me is summed up wonderfully by Senator Boyce:

The theme chosen for this year’s World Down Syndrome Day is “Aim High Enough”.

It’s from a piece of advice that an old villager gave Langdon Down and that he passed on to his medical students: “My lad, you take your aim; be sure you aim high enough. That’s the thing – aim high enough.”

As a society, we owe it to ourselves to ensure that we are never satisfied that we have aimed high enough in supporting people with Down syndrome into the mainstream.

For more information you can visit the National Down Syndrome Society

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What Marlee Matlin taught me by dancing

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Posted by Kyron | Posted in Deaf/Hearing Impaired, Education, Inspiriation, News, Television | Posted on 19-03-2008

I am something of a tv addict. One of the shows I love is Dancing with the Stars. Part of what draws me to it probably has something to do with the fact that for some reason my husband is willing to watch it with me. But I do get some Marlee Matlin and Fabian Sanchez | Dancing with the Starssatisfaction from watching people stretch outside their comfort zone because lets face it, most people do not have a comfort level with ballroom dancing.

Now we’ve had soap opera, movie and other tv actors and actresses, singers from 70’s music to country to R&B, olympic athletes, football players, comedians, broadway stars, race car drivers and on and on…..a truly diverse group of individuals. Differences aside, there is one thing they all had in common. They could hear the music.

This season Marlee Matlin, youngest woman to win an academy award in the best actress category and more recently seen on The West Wing, The L-Word, Nip/Tuck and Desperate Housewives is trying out her dancing shoes which is all the more amazing given the fact that Marlee is profoundly deaf. I watched last night in sheer astonishment and joy. Look at that girl dance!!! I am certain she feels the rhythm to some extent but she’s really at the mercy of her partner Fabian Sanchez. He must need to give her certain cues to make sure it comes together and there is no denying whatever they are doing is working.

This will be my example to Katherine of never saying “I can’t do that”. Sometimes Katherine is quick to say she doesn’t have the capability to do something.  I feel badly about it because maybe I’ve protected her too much. Yet I try with all my might to open her world to as many possibilities without telling her she can go to Harvard and be a neurosurgeon.

The point is this though. I doubt anyone told Marlee Matlin as a young girl that she could dance. Competition ballroom dancing just isn’t one of the things you typically do if you are profoundly deaf and yet – why the heck not??  I doubt anybody said “Oh honey absolutely you’ll be an academy award actress!”  What I love about Marlee Matlin most is that Marlee does what Marlee wants – not necessarily what she “should”.

What a great role model she is for her 4 children. What a great role model she can be for our children. Proof that if it’s something you want to do by all means you should try. I don’t know about you but it’s a good lesson for me too. Sometimes maybe out of a desire to protect my ‘baby’ (yea my 16 year old baby) I don’t allow Katherine to stretch as far as I should or she could. I think maybe I will be going out to get some dancing shoes. Thank you Ms. Matlin for allowing your actions to remind me of what Eunice Kennedy Shriver said at the first opening ceremony for the Special Olympics:

In ancient Rome, the gladiators went into the arena with these words on their lips: ‘Let me win, but if I cannot win, let me be brave in the attempt…’

Let me too be brave in the attempt.

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