Wednesday, August 25, 2010

Something to think about....

From one of my favorite blogs:
Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010Yesterday at 4:33pm http://davehingsburger.blogspot.com/2010/08/people-who-are.html?spref=fb
Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010 The People Who 'ARE' It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people. No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt. People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others? It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified. The people who 'ARE' what the 'R' word refers to have a long history. They have been torn from families and cast into institutions. They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized. They have been held captive, have been enslaved, have had their being given over to the state. They are the group in society most likely to be physically, sexually and financially abused. They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system. They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts. They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt. They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity. They are the least likely to ever be seen as equal, as equivalent and entirely whole. They are the victim of some of the most widespread and pervasive prejudices imaginable. They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats. They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out. They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship. That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world. That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future. That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat. They are a people. They ask for respect and receive pity. They ask for fair play and are offered charity. They ask for justice and wipe spittle off their face. They ask to silence words that brutalize them and their concerns are trivialized. They ask to walk safely through their communities and yet bullies go unpunished. They ask to participate fully and they are denied access and accommodation and acceptance. And this is NOW. This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice. It is a voice not yet heard. It is a voice not yet respected. It is a voice not yet understood. But it is speaking. And when it is finally heard. The world will change. The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.
Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010Yesterday at 4:33pm http://davehingsburger.blogspot.com/2010/08/people-who-are.html?spref=fb
Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010 The People Who 'ARE' It's in the press again.
Sent from my Verizon Wireless BlackBerry

Friday, August 20, 2010

I thought...

I thought I would have to teach my child about the world, but instead I have to teach the world about my child." ~Unknown
Sent from my Verizon Wireless BlackBerry

Friday, August 6, 2010

I am determined

The past two weeks in many ways have flown by like a blur. I've been habit training Sadie to go on the potty and it has truly been a tiresome experience. We (I) have spent countless hours sitting, saying, repeating, "Sadie, go potty." I even went so far as to paint the bathroom at the beginning of the week, with the thought that if I'm going to be in here this much, I might as well do something. We immediately had pee pee success and I have really felt that with a schedule and a routine that Sadie will be able to be habit/time trained.
For those of you that have no-idea what "that" means, habit/time training essentially is training the caregiver to put the child on the potty at routine times or after routine habits. For instance, immediately upon waking, eating, napping, etc. or time training meaning every hour putting her on the potty. I'm getting all this knowledge from Toilet Training for Individuals with Autism and Related Disorders by Maria Wheller. Now for all of you that think WOW I didn't realize Sadie had advanced so much or understood that she could go on the potty. My response to you is once again, Sadie sometimes gets it and sometimes she just doesn't get it, and I'm reminded of that because she just pee-ed all over the couch, not because it was an accident, not because she has even an understanding that that was the wrong place to pee, but because SHE JUST WENT. She had to go, and so she did, without any bit of conceiving that she should have gone on the potty. Now, once again, don't get me wrong, just this morning I was sitting in the kitchen and out of the clear blue, I hear her tinkling on the potty all by herself. Yes, she walked her little butt right on in the bathroom, sat down, and pee-ed. But that is the enigma with Sadie, just when you think she gets it, she shows that she doesn't, and then she shows that she does again. AND, that is why potty training, this habit/time training is going to be, without a doubt, an ongoing process and possibly be months in the making of forming the habit. They say something like 7-12 times make a habit (someone better fact check me on that), but that it takes hundreds of times for a child with an intellectual disability to learn something too (fact check that too). And so with that said, we are on at the end of our 15th day of naked habit/time potty training and I'm not about to stop now. We are going to push through this and we are going to do it, I don't care if it takes 1 year or 5 years.
I am determined.

Monday, August 2, 2010

Eating

Imagining there are people starving in the world ...Sadie has virtually every opportunity to eat always. Yet, she could truly care less about eating...WTH
Sent from my Verizon Wireless BlackBerry

Wednesday, July 21, 2010

Washington Post

We are in tomorrow's Washington Post. Our photos are online now... http://www.washingtonpost.com/wp-dyn/content/article/2010/07/21/AR2010072102651.html?sub=AR
Sent from my Verizon Wireless BlackBerry

85% divorce rate

http://supportforspecialneeds.com/2010/07/21/eighty-five/ by my favorite blogger Robbert Rummel-Hudson, Schyuler's Dad
Sent from my Verizon Wireless BlackBerry

Friday, July 16, 2010

Microarray SNP results

Hello everyone! Sadie had the Microarray SNP test and a CBC blood test. We found out today that she is anemic and will be taking iron supplements. The SNP test showed that her new karotype is deletion 8p23.2 extra xp 22.13 to the terminal deletion. In short, she is missing more chromo 8 than we originally thought an...d she has a larger band of extra xp than we previously thought too. What does all this really mean....???? Not to much, nothing has really changed....I wish I could say differently, but Sadie is Sadie and she will continue to show us her path.

Time is a Thief

I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...