"English Idol"

Tonight I was playing with my lovely 4 year old, Ashton (Little angel in pink). We were sitting outside swinging, when she started to talk about what life will be like when she grows up. She informed me that she wants to be a Mommy, she would like three children, two girls and one boy (hmmm, I have two girls, one boy). This prompted me to ask other questions, "Well do you just want to be a mommy, or would you like to do other things as well?" At this point she informed me that she will work at my job (I don't blame her, it's a great job!). I then asked if she will be married and what her husband will be like, at which time she stated "well, he'll be handsome and kinda bald" (she just described her dashing father- James dashing man in back). At this point I turned to her and exclaimed "Do you want to be me when you grow up?" "Yes," was her reply, "but my name will be Ashton!"

This conversation brought about memories of similar conversations with my son (Tyler, handsome young man on right), who used to say that I was the most beautiful woman on the planet and he would marry me when he grew up. He was of course very young, when he got old enough get the whole "Oedipus" thing, he would then say that when he got married, he and his wife would have to live right next door to me, and when he flew to the moon I would have to go with him as he couldn't bear to be too far away from me! Those days are long gone, he now refuses to be seen in public with me and proclaims to the world that his mom is the "biggest nerd ever!"

While I want all my children to be their own person, I realized this evening how precious it is to be "idolized" so. I will never be famous or have a fan club, yet have been (however temporary) an idol to the three most important people in the world to me. What a big job that is! But what a delightful responsibility. I realized tonight that while this type of adoration may be fleeting it is so precious, and I would like to believe indicative of the great relationship I enjoy with each of my kids. No, it's not always a day at the park, but they always know they are loved, they always have someone to play with or talk to, they always have a support system and are never belittled or humiliated. They get to see and hear me stand up for what I believe in, work hard, place value on education and most importantly in other human beings. So while they may not want to be me or want to be with me forever, I am so glad that for even an instant my kids can look at me and think "she's an OK lady" or "that's the kind of mom I want to be." I'm also pretty happy that my kids can look at my life and their own and see it's blessings.

This job did not come with a manual, and it's always hard, but tonight I am patting myself on the back and giving thanks to God and my husband and my mom, who have helped me to cherish and support my kids, to keep them safe and lift them up. So, I celebrate being an "English Idol" (I'm not originally from the U.S. so can't say American), and I celebrate the most amazing three gifts I have ever had!

*I chose to post a picture of my gorgeous family today (I've been hesitant to do so in the past) Don't pay attention to the date on the picture, we never reset it. By the way, little girl on left is my sweet Savannah.

"One Person"

One of my favorite quotes is "You may only be one person in the world but you can be the world to one person." I often say I hope to have some part in making a difference for at least one person, but you know I think the person affected most is...me.

Through my job, my family, all my big mouthed attempts at teaching people about human rights violations, the person most impacted is myself. Each time I meet someone new, whether it's a consultation at work or someone in my personal life, I walk away with so much from that contact than I ever give to the other person. I guess in that respect what I once thought was an honest pursuit of "saving the world" has always really been about me. I don't do it to be selfish, I rarely think about what I have to gain from the things I do (although I do beam when someone shares their appreciation- it does feel good!) I don't brag about it (except in those cases when someone has called me helpful, then I want everyone to know), I do love it though!

So many people have impacted my life, every day I walk away having learned something or having a richer life because of every experience. I do think I am lucky because I recognize these changes in my life, I am open to them, so many aren't and my heart breaks for them. What a fortunate person I am! I take away so much every day just from living! Maybe it's selfish, I don't know (really I do call myself FAB so there has to be something going on with my ego right?), but I don't want to ever stop.

So, I guess I 'm writing today to thank all of "one person" (s), who have made a world of difference in my life, and I'm writing in anticipation of the "one person" who will come along tomorrow, and the next day, and the day after that and...you get my drift. Maybe one day I will make a difference, but in the interim I think I'll keep doing what I'm doing because it sure works well for me!

Stealing a page from Mr. Hingsburger

Armed with an e-mail address and phone number for Ben Stiller, I have stolen a page from Dave and have written a letter which I already sent.

Dear Mr. Stiller,

I am writing with the hope that reaching out to you will mean reaching many others. I am of course writing in response to your film “Tropic Thunder.” I do believe that the words you use in the film were not meant to hurt; I do believe that, as you say, you were poking fun at self absorbed actors. Here is the problem, just because you don’t use those words to hurt doesn’t mean they hurt any less. People with intellectual disabilities are the last group of openly oppressed people in our country. Part of the problem is that people don’t “think” about the words they use, the ways in which disability is characterized because they don’t give people with ID/DD a thought. The problem with this is that people with ID/DD can then become a target for people who would categorize them as somehow “less than human,” “less than us.”

Did you know that people with disabilities are abused at alarming rates? Some statistics reflect that 90% of the population of people with intellectual disabilities are abused. This is able to happen so frequently because of how disability is characterized across the globe. I am certain that with this information you would rather do something to stop it rather than inadvertently encourage it. Again, I know that hurt was not your intent however, you must be aware that now teenage boys will have new phrases to brandish as weapons against fellow man. “Full r****d” is already being used, and it will only get worse as more people see the film.

Furthermore, are you aware that about 75% of infants with Down syndrome are aborted before they even get a chance at life? I am sure you can see how this might make Mathew McConaughey’s statement in the film "Well, at least you still have a choice. I'm stuck with mine,” more than a little offensive. You see, there is a belief out there that people with ID/DD have less value than those of us who are typically developed. If you don’t believe me, read about Tracy Latimer, Brent Martin, or Danieal Kelly. Sometimes we are still not much better than the Nazi’s and their t-4 program, and we certainly have only come so far since the eugenics movement and forced sterilizations.

I write this letter to ask you to become educated and perhaps, in turn, educate others. I would also like to thank you in a way. Because of your movie, people are speaking out, self advocates are given the opportunity to stand up for themselves and say “enough!” Maybe, because of that, in a few more years we won’t have to have conversations like this any more.
************************************************************************************
If you would like to do the same, here is how:
You can call Ben Stiller and leave him a message at 323-602-5000 contact@dreamworksfansite.com.
DreamWorks SKG Studio DreamWorks SKG 1000 Flower Street Glendale, CA 91201 Tel. (818)-695-5000

Take a look at the protests! http://www.cnn.com/2008/SHOWBI...

Boycot Viacom

Viacom owns Paramount and Dreamworks, responsible for the film Tropic Thunder. I am personally going to boycot thier brands, and thought I would share the list if anyone is ineterested. You can also e-mail Viacom at http://www.viacom.com/contact/Pages/default.aspx
or sign a petition at ,http://www.ipetitions.com/petition/stopTropicThunder/.
Viacom Brands
MEDIA NETWORKS
BET NETWORKS
BET
BET J
MTV NETWORKS
ATOMFILMS
ADDICTINGGAMES
CMT
COMEDY CENTRAL
GAMETRAILERS
HARMONIX
LOGO
MTV
MTV2
MTVN INTERNATIONAL
MTVU
MTV TR3S
NEOPETS
NICKELODEON - NICK JR.
NICK AT NITE
NOGGIN
PARENTSCONNECT
QUIZILLA
RHAPSODY
SHOCKWAVE
SPIKE TV
THE N
TV LAND
VH1
VH1 CLASSIC
VH1 SOUL
VIRTUAL WORLDS
XFIRE
FILMED ENTERTAINMENT
PARAMOUNT PICTURES CORP
PARAMOUNT PICTURES
DREAMWORKS STUDIOS
PARAMOUNT VANTAGE
MTV FILMS
NICKELODEON MOVIES
HOME ENTERTAINMENT
GLOBAL REACH
BRAND INDEX

Please participate in any way you can, it only takes one voice to inspire change but imagine what can be done with thousands!

Speak up against dysphobia!

http://davehingsburger.blogspot.com/

Please visit Dave Hingsburger's blog today. He has written a letter to Ben Stiller regarding his movie "Tropic Thunder." I ask you all to get involved, I will be writing my share of letters and asking some of my friends to do the same. If you or someone you know has a developmental disability, please stand up and speak out. Words after all are only the beginning...that's how the holocaust started.

2300

I mentioned earlier this week that I was at a conference. It was the National Autism Conference to be exact. When this conference first began some 12 years ago, there were 300 people in attendance, this year there were 2300. It was a sea of expectant faces, some professionals, educators, parents, children and adults with autism and Behavior Analysts abounded. This year was the conferences largest to date, some people had come from across the globe to hear the latest and greatest in autism research, education and "behavior" techniques.

Care worn faces of parents were everywhere. I realized early on that I had stepped into an almost alternate universe, it is a culture in an of itself. Parents are surrounded by people who bow at the altar of Skinner, words like "shaping," "extinction," and "molding" have become a part of their daily vernacular. Appointments with OT, PT, speech and behavior have become a routine part of life. Gluten free diets, chelation therapy, gamma globulin injections and other medical approaches are offered up on the menu of "hopes." I marveled at the courage and determination within many families, particularly astonished by the children who are whisked into a world where others try to mold them into someone new. They patiently abide the rules of this alternate universe and I imagine hope for a day when no one wishes to "mold" them any longer.

There were some small whispers of "cure," but mostly I observed a crusade to understand. The sea of 2300 faces held the frustration, hopes and heartbreak of some, the "expertise" of others, and the bewildered. I'm still not sure what I have taken away from this experience. I picked up a few things, but overall it felt sad. Rather than working toward transforming a cold an misunderstanding world, it seems that instead many in this army of 2300 wished to transform these children. And I'm just not sure what I think about it. All week I heard about approaches and treatment aimed at transformation, but didn't hear about the feelings and needs of people with autism. I know that each parent there cares about their children's feelings, I'm not insinuating that they don't, it's just not something I heard about during all the conversations about "behavior."

If you're reading this and have some thoughts, please post them. I feel like I'm missing some piece of information which will transform this "mystery" universe (from my perspective) into something that I understand. Please know that this blog is not meant to offend, and I apologize if it has presented anyone with anger, but if you are offended please let me know. Perhaps through your anger I can glean a new understanding.

"I hope she dies before me"

Let me begin with an apology...I have not abandoned my blog, but am away at a conference, and the room I'm in does not have an internet connection (In today's age can you even believe it?). So today has been my first opportunity to make it to a "hot zone"

On Sunday morning I got up and turned on the TV as I sipped my coffee before heading to church. A movie I had not seen before was on, "Autism: The Musical." I have always meant to see it but never had the chance. I can't say I was really watching it as I had other things I needed to do, but paid attention to what people were saying in the film as I went about my business, fully intending to catch the movie in it's entirety another time. Then I heard a mother talk about her daughter. She spoke about how people don't see her value, about what needs to happen so that people will see her value, I was about to stand up and shout "Amen!" when her next sentence stopped me in my tracks. She said "I hope she dies before I do."

I have heard words like these before, I have actually seen elderly parents at their son's funeral grieving, but relieved because now they didn't have to worry. These used to be sentiments I could not understand. When I heard parents of the people I worked with say these things, in my mind it was monstrous. Oh how I have grown since then. Parents who say this don't do so because they don't respect their child or their right to live, they don't say It because they are tired and want a break, they don't say it because they are monsters. They say it because they see the world, cold, cruel and unforgiving and are gripped with the fear that after they are gone there will be no one else to support, protect, love, advocate...

Most parents can't picture a day when they might feel this way. I myself think of my children's future and am filled with hope. I speculate that after I am long gone they will carry on some family traditions, pass on some of my spunk, they will be successful and loved and live big lives full of love and adventure. Whatever challenges my kids face now or when I am gone, they are not living in a world that doesn't accept them, value them, or see them as full human beings. Yes, it is difficult for many of us to imagine wishing our children dead before us, it seems unnatural and out of the natural order. While the parents who do have these thoughts about their children with disabilities are loving parents too, the rest of the world doesn't facilitate ease of mind for these parents. I can not pretend to know this fear, I can not pretend to completely understand, but I have learned that I can not judge. I have also learned that I and others need to keep working to change the world, so that someday no parent has to wish their child's end might come before their own!