Thursday, August 28, 2008

"Double agent"

I have acquired a second job! My first job is awesome, and I think we are well compensated for our work-particularly as it is in human services, but no one will ever get rich in this field! With the economy the way that it is, our money just doesn't seem to stretch out quite enough, so I am now moonlighting as a waitress. I love it! The restaurant is amazing! The people are great! but this means I have less time for blogging. I will still post, and I have of course abandoned the blog for periods in the past. Keep your eyes peeled and I'll pop up at least a few times a week.

I'm attaching the link for the restaurant, you have to check it out, Chef Dato rocks! I highly recommend that if you are ever in the area you should stop by. You'll have the best meal ever!

Tuesday, August 26, 2008

"Make the most of yourself..."

Savannah, my daughter, just started 4th grade on Monday. She was given a homework folder and on the back are a list of great quotes. I'd like to share them with you, my favorites indicated in blue.

Make the most of yourself, for that is all there is of you-
Ralph Waldo Emerson

Good character consists of knowing the good, desiring the good, and doing the good-
Thomas Lickona

Hate is like acid.It can damage the vessel in which it is stored as well as destroy the object on which it is poured- Ann Landers

People need to respect each other's concerns and differences. And frankly, there's far more in common than divides us- David Dinkins

Parents can only give advice or put kids on the right path, but the final forming of a person's character lies in their own hands- Ann Frank

Words can destroy. What we call each other ultimately becomes what we think of each other, and it matters- Jeane Kirkpatrick

Although the world is full of suffering, it is full also of overcoming it-
Helen Keller

We must use our lives to make the world a better place, not just acquire things-
Delores Huerta

To do good in the world, first you must know who you are and what gives meaning in your life- Paula P. Brownlee

This above all: to thine own self be true-
William Shakespeare

Do you have a favorite quote? Please share any really good ones, or pick your favorite from this list.

Monday, August 25, 2008

8th Graders and Heroin?

That's right, did you know there are 8th grade students who use heroin? I'm sure somewhere in my mind I understood this, but never really thought it was true and certainly not present in the quaint suburban schools where I live. Well today I learned that 8th graders can not only use heroin, but also transport it to school via their backpacks!

How do I know this nugget of information? Because my son who is still restricted to PG movies is in class with someone who was busted with heroin in her backpack! Of course, it was planted there (according to her).

My rather sad blog on Saturday was in reference to the schools decision to place my son (supposedly temporarily) in an "alternate" setting. What it boils down to is that they don't know what else to do because of that oh so scary label he carries. Up until his transition to middle school last year he did very well, with some help from me and teachers. At the middle school level he no longer had only one teacher throughout the day and because my requests for support for him had fallen on deaf ears, it was a difficult transition. Academically he still fared pretty well, but if you review a much earlier blog(seen, not heard) you may note that I was suddenly getting calls because he "laughed and moved around" in the lunch room.

So, now my son is at school with heroin using 8th graders and students who have attacked teachers...Tyler did very well today and is keeping his goal in mind, to get back to regular school as soon as possible. I'm doing everything I can to support him, meanwhile contemplating staking out the school to ensure that no illegal activity comes close to my son! OK, so I won't stake out the school and I know that Tyler is well educated and above those influences, but I have to wonder...What the hell were they thinking???!!!!!!

Saturday, August 23, 2008

Not Today

Today I can not be a "warrior," not today.

My son is about to learn of the cruelty and hazy assumptions that sometimes rule our world, and there is nothing I can do about it. He has been characterized by a label and no matter what I say or how I say it I can not change their minds. He is going to have to be his own warrior and fight this battle for himself. I can not prove to them who he really is, only he can do that.

For the first time in his life I can not shield nor protect him from the view others have of mental illness. Right now, his school sees only THAT label, to them, at this moment he is nothing more and they are afraid of what they do not know. They have been blinded by their assumptions and no matter how much righteous indignation I can muster their assumptions, no matter how discriminatory, will not change. Only my precious son can do that.

Come tomorrow I have to explain to him what is happening, I will have to look at the hurt, disappointment and anger in his face and then will have to send him "out there" to conquer attitudes for himself. I have no choice but to be positive and strive to see the best in this, and somehow I have to show him the best in it too. I will have to stand behind him and cheer him forward but no longer can I wage on for him.

Today is a new day in my title as "mother," today will be a new day as my son is forced to be man. He can do this, I know he can...but how I wish he didn't have to, at least not today, not yet.

Thursday, August 21, 2008

Today I got a gift

Today I was a given a gift from one of my favorite people. To show gratitude, he had purchased a book, but not just any book. He took the time to really consider who I am, and gave me a book that fit with that. He made a perfect selection and I am so excited that someone took the time to REALLY consider who I am. It's not often that people do that. That wasn't the best part of the gift though...

As he presented me with this thoughtfully selected treasure he took the time to explain it. He talked about who I am, and I'm pretty sure I heard the term "Warrior princess". I like that! That's a moniker I can really sink my teeth into, maybe next week I won't be fab anymore! It was a wonderful gift from another person who could describe how they see me, who I am( He did say more than just warrior princess-but boy that stuck out). It was a great gift to know that someone looked so deeply. That wasn't the best part of the gift though...

Inside the book was a card. The card was a beautiful one expressing gratitude, again within this card some virtues were noted, sincere appreciation expressed. It was as thoughtful and carefully selected as the book, as was the inscription within. It takes real time to do this, to pick the perfect card, write the perfect words and not a lot of people take that time these days. I felt pretty nice to know that someone, who didn't have to, had really considered me, took time out of their hectic, demanding schedule to really express that in some way I am important to another human being. That wasn't the best part of the gift though...

The best part of the gift was a word written inside the card. It was the word "friend." That is the gift I am most grateful for from this person and anyone else who bestows that title upon me. To be called friend and to have people I can call friend, that's a true blessing. Especially to have the friends I have been blessed with. I have a friend I admire and respect, a friend with knowledge and compassion and dedication. A friend who takes the time, and who is just one of several others who would give me time should I need it. I am called "friend, " that's the true gift.

Wednesday, August 20, 2008

"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.

Friday, August 15, 2008

"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

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 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!

Wednesday, August 13, 2008

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
DreamWorks SKG Studio DreamWorks SKG 1000 Flower Street Glendale, CA 91201 Tel. (818)-695-5000

Take a look at the protests!

Monday, August 11, 2008

Saturday, August 9, 2008

Speak up against dysphobia!

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.


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.

Wednesday, August 6, 2008

"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!