Saturday, August 30, 2008

The R-Word, According to Maria Shriver

A great article, thought I'd share it :)

The 'R-word' is no joke
For the intellectually disabled and their families, it's just as bad as the "N"-word.
By Maria Shriver August 22, 2008

This has been a year filled with teachable political moments. Racism, sexism, ageism and "change" have been debated at kitchen tables and water coolers across America. But this last week, those gathered around my kitchen table have been consumed with another discussion, one that is not Democratic or Republican -- it's the "R-word" debate.

The "R-word" stands for "retard." For the 6 million to 8 million Americans with intellectual disabilities and their families, this word and its hurtful use is equal to the impact of the "N-word" on an African American.

The reason it's kitchen-table fodder is because of the Dreamworks film "Tropic Thunder," which topped the box-office charts when it opened last weekend and which will attract many more moviegoers this weekend. In the R-rated film, which I've seen, a character named Simple Jack is a caricature of a person with a developmental disability. In one of the scenes, the character played by Robert Downey Jr. chastises Ben Stiller's character for "going full retard," and the "R-word" is repeated many times.

As a journalist, I respect the right to freedom of speech, and my kids will tell you I laugh the loudest when we see a comedy. But as the niece of someone who had a developmental disability, and as a member of the board of directors of Special Olympics International, I know how hurtful the "R-word" is to someone with a disability. I know why "Tropic Thunder's" opening was met by protests on behalf of the intellectually disabled.

Listen to actor Eddie Barbanell, who serves on the Special Olympics board with me, and he will tell you in very emotional terms how the use of that word has made him feel rejected, stupid, demeaned.

Or you can talk to Special Olympics athlete Loretta Claiborne, who speaks on behalf of millions when she describes how the "R-word" has been used to mock and degrade her. She asks all of us to stop using this word without regard to its effect on the hearts and minds of people with disabilities.

There is an old saying: "Sticks and stones will break my bones but names will never hurt me." Even when I chanted it as a child, I never believed it. Words do hurt -- they break people's spirits, they break people's dreams, they break people's hearts.

Kids will see "Tropic Thunder," no matter the rating, and when they leave the theater and go out to their schools, their homes and their communities, they'll call each other the "R-word" because they think it's funny. They'll do it without any idea or regard to how it makes a person with a disability feel.

Too many in the intellectually disabled movement cannot speak out for themselves. It is up to their families and those of us who advocate on their behalf to explain that calling someone by the "R-word" is no longer acceptable and is anything but funny.It's not acceptable in a movie theater; it's not acceptable on a playground.

It's not acceptable that college coaches use it to chastise athletes. It's not OK to use it in a classroom or a boardroom.

"Tropic Thunder" is giving Claiborne, Barbanell and many other individuals and organizations that serve those with special needs -- the Special Olympics, the National Down Syndrome Society, the Arc, the American Assn. of People with Disabilities, Parent to Parent-USA -- a teachable moment. They are ready to join with the entertainment industry to change minds. Dreamworks' decision to include a public service announcement with DVDs of "Tropic Thunder" is an important first step, but far more needs to be done.

Just as important, parents must talk to kids at our kitchen tables about how we have felt when someone called us stupid, idiotic or lame. Because once we put ourselves in someone else's shoes, certain names just aren't that funny any more.

I often quote the Hopi prayer that tells us not to look outside ourselves for a leader. It tells us that we are the ones we have been waiting for. We can exchange one "R-word" for another: respect. We can teach our children that name-calling hurts.

Let's makes the "R-word" as unacceptable as the "N-word." Think of all we can accomplish if we work together.It's one thing in this political season that shouldn't require a water-cooler debate.

Maria Shriver is the first lady of California.

Saturday, August 23, 2008

Lazy Weekend at the Cottage

Last weekend we made a spur of the moment trip to Phyllis and Roy's cottage and we're so happy we did...a great time was had by all! The weather was perfect, Jason and I got to sleep in a bit (thanks Grandma Phyllis!) and we ate fantastic food. Poor Joey got attacked by a mosquito that was trapped in his room for the night, but the bites bothered us more than him I think. Of course we have pictures from the weekend:

The summer has flown by so fast! We're gearing up for a busy fall: Joey will be going to swimming lessons on Mondays with Mommy, Kindermusik with Grandma Phyllis on Fridays and of course nursery school on Thursdays starting in October. We also have a visit from Grandmere in September and Jason and I are taking a 4-night trip back to Vegas over Thanksgiving in October to look forward to. And as if all of that wasn't enough we now have another trip to Florida booked in April 2009. This time Joey will have a 3-month-old cousin joining him :)
- P, J & J

Sunday, August 10, 2008

Joey Gets "Accepted" to Nursery School!

This is such exciting news! After our experience with the last nursery school we tried to register him with, I was a little on edge when exploring different options. I ended up calling one of the oldest nursery schools in our city and immediately I could tell this one was going to be different. When I spoke to the registrar her immediate attitude wasn't one of "I don't know if we can do this", it was more like "let's see how we CAN do this". She spoke to me at length about what Joey's needs are, and told me she'd speak to the head teacher and get back to me. Within a week it was all sorted out and I had the registration package in my hands! They are willing to do a bit of a trial...Joey will be 2.5 years old on October 1st and that is the youngest a child can be to attend nursery school. So, we're doing a one-month trial for October, with Joey going once a week. Grandma Phyllis will be his mediator, so he will have the one-on-one support he needs. If it all goes well he will attend twice a week starting in November. It's the perfect way to begin exposing him to larger groups of kids his own age, and perhaps it will stimulate him to want to "copy" his classmates.

I'm trying not to place unrealistic expectations on this new experience. Joey is definitely more comfortable around other kids now than he was a year ago but their squeals, babbling and other assorted noises still really bother him and cause him to cry. It's entirely possible that he is not quite ready for this and we may have to withdraw after October and try again in a few months, but I am so happy for the opportunity to at least try.

I'm adding a video clip of Joey playing with his little friend Ava, who is 11 months old. You can see his facial expression start to change once she starts to make noises. I didn't actually capture it in the video but he did start to cry after a little while of Ava babbling, and once that starts it doesn't really stop until I remove him from the situation. His tolerance has increased though; 6 months ago the crying would have started within 5 minutes, but this time he held off for about half an hour. But I'll also post a picture of the two of them when we first arrived, and they were smiling at each other and at one point Ava laughed and Joey laughed with her. HUGE improvement for him!

Tomorrow Joey is having what's called a Bayley Assessment. It's a testing tool used to determine where he is developmentally. Here's a description of it:

The full name of the test is Bayley Scales of Infant and Toddler Development,.The child is asked to do a number of activities to see if their thinking, language, and moving (sitting, walking) skills are similar to children their own age. The Bayley-III has three major parts that are tested with the child: Cognitive, Language, and Motor. The parent completes a Questionnaire that looks at the child's Social-Emotional and Adaptive Behavior development. The scores that come from the assessment indicate how well the child performed compared to a group of children within the same age range.

I'm a bit nervous...apparently it takes 2-3 hours to complete, and if Joey doesn't appear to be "in the mood" they will reschedule all or part of the testing. It's all done through play and other social interaction, so it should be fun for him, but the person coming to the house to do the test is someone Joey has never met, which could pose a bit of a challenge. I've already been warned that sometimes the results can be a bit emotional for parents. Some parents are shocked by the level at which their child is functioning and it can be a bit depressing to see it on paper. I can't imagine I'll be shocked, I already know he functions at a 6-9 month old level in most areas. I suppose it they told me he was at a 3-month-old level it would throw me for a loop, but I really can't imagine that would be the case. If all goes well tomorrow we should have a written report in about 2 weeks. I think having that report would be very helpful to the nursery school and anyone else involved in Joey's care. Since we don't have a definitive diagnosis it's really hard to describe Joey and his needs/abilities to other people, so I think this will be very useful. Wish us luck!

- P, J & J

Wednesday, August 6, 2008

New Name for the Blog

Thanks to a dear internet friend (Thanks B!) I now have a new name for the blog. The Angelman name doesn't seem appropriate anymore, and with the new name I think it's probably best to pick something that I will never need to change. It was fairly obvious once pointed out to me because I've already used it several times...Lessons From Joey. So in a few days I'll be changing the name. For those of you whose email address I have I will send you a new link, otherwise you can email me at

The new address will be:

An update on Joey's progress is coming soon, along with some new pictures and video!

-P, J & J