Thursday, August 21, 2014

The Challenge for all of us is this:

Before I even begin to say what I want to say, let me say this.

ALS research and funding is very important, the people who live with it are indeed very deserving of this incredible and very simple campaign that has raised an astronomical 41.8 MILLION dollars as of today. Wow. Great job.

This young man lives with ALS in a very real way. His emotions are raw, and heartbreaking. It is a devastating disease that has taken so much from so many. And it needs to be funded.

The past few weeks on social media have been astonishingly full of this Ice Bucket Challenge. In fact, my own daughter will participate in one with her cheerleading squad this afternoon. I get it.

But I have a question for you?

Have you ever heard of a Challenge to raise funds for people living with Down syndrome?

Lets compare numbers:

NIH funding for ALS this year is projected to be $40 MILLION dollars. 40 million! That is a lot of money.
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert. Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year.

As many as 30,000 Americans may currently be affected by ALS.

NIH funding for Down syndrome this year is projected to be $19 million dollars. $19 million is also a lot of money. But it is less than half of what is spent on ALS. Why does that matter? Well, ALS is thought to affect as many as 30,000 Americans. People currently living with it.

Down syndrome? It affects some 400 THOUSAND people!

370,000 more than ALS. Half the funding.

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.
Where are our advocates? Why are we just sitting idly by and not doing something? Grassroots, creative, fun, social-media-based. We have GOT to stand up and demand to be heard. NIH isn't going to fund us.

Down syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in every 691 babies in the US is born with Down syndrome). The funding for research benefitting people with Down syndrome at the NIH started a continual and precipitous decline in the year 2001. Even compared to other intellectual and developmental disabilities or comorbidities, Down syndrome has been funded anywhere between 3x and 11x less on a per capita basis year on year. It is important to educate our representatives in DC, with the NIH and other federal and local organizations in terms of how basic, clinical, developmental and educational research benefits people with Down syndrome and their families. In order to reverse the lack of funding for people with Down syndrome we must advocate strongly but do so in a spirit of partnership and cooperation.

I have a challenge for those of us who love someone with Down syndrome. SHARE THIS POST! Talk about it. Be respectful, kind, and understanding. We aren't begrudging the folks with ALS and their incredible fund raising ideas. But we DO want to find a way to do this within our own community. We NEED to do this. And we need to raise our voices together and demand answers as to why the most commonly-occurring chromosomal condition receives the LEAST amount of funding.

Friday, January 24, 2014

What Ciarra sees

earlier this week, Ciarra told me about a student that used scripting to deal with her emotions at school. "Yesterday on the way to school, Ciarra and I were talking about how much she loves the class and teachers. She told me there's a girl in her class who hates it and is rude to the teachers often. Tells them to shut up, etc. Then she told me that the girl has autism and "really tries hard but the autism makes her mind work funny. Like SCRIPTING, she doesn't want to script, but autism makes her do things different" SCRIPTING. My kid not only understands the uniqueness of another kid with disabilities, she was able to tell me all about what scripting meant (her thinking is that scripting means the girl goes into character when she is naughty so it isn't HER being bad, its the characters words/actions:.and yes, she used the word character) Ciarra is SO smart and aware and thankfully has the ability to tell me what she thinks. But it surprised me how maturely she thought of the situation."

I was impressed by what MY child knew. But somewhere in the back of my mind, I wondered...WHERE did she learn this word? What has she seen, and heard? Then I read this.
What I saw I left the gym, I had to, because the music made me uncomfortable. I stood by the door. I waited. I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows. I know what they saw. They didn't see someone asking to be taken for a walk. They didn't see him begging to have some space. They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way. They saw someone who didn't understand the point of P.E. They saw a runner. He pulled away, and the aide pushed him back through the gym door, shouting "In we go! In we go! In we go," his hands pulling and pushing as the student dug his heels in. Everyone else "encouraged" from the sidelines. I saw too much happening. I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much. I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody's hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save! I saw dizzy and disoriented. I saw what he saw. I saw a classmate who couldn't respond to prompts because they were coming too fast, and who couldn't comply because everything was being thrown at him at once. He slumped against the gym wall and slammed his head back. The act was met with a sharp reprimand from a bystanding aide. And I know what they saw. They saw defiance. Headbanging behavior. A tantrum. I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly. I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate. I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise. I saw that nobody was asking themselves how he might feel. I didn't just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain. I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, "He's having a little fit." No. That's not what I saw. I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water. I saw a hasty and disjointed "rescue" that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them. They saw a fit. They didn't see what I saw. ***** I know, I mouthed across the aisle. It's ok. I know. He smiled back at me. I know. The bus engine rumbled, and we began to pull out of the lot. They were still talking about him, imputing motives based on their own experience. I knew that he could hear them. That they didn't really care. That it wasn't my place to correct them. To try and educate them. Not the student's place. I saw the look on his face, and I knew that nobody understood. He sat alone, leaning against the vinyl of his seat, his expression fraught with distress, his eyebrows knit. I knew that they were fine, and they could sit there and casually theorize about it, but that he was still coming down. I saw the look in his eyes. I didn't know what to say. I saw his hand, resting on the seat. Hesitating, I leaned into the aisle and placed mine next to it. I didn't know how else to say I support you. His thumb wrapped itself around two of my fingers, and for a moment it was like that. Then he lifted his hand and took mine in it. I squeezed. I know. We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his. They said I helped calm him down. Sometimes people underestimate what it means to acknowledge someone's humanity. To see it. I don't know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know. This is what I saw. Very different from what the teachers saw. I don’t know exactly what he saw. I believe that it was terrifying. But I hope . . . I hope . . . that after the terror . . . I hope that he saw a friend.
I wonder sometimes what its like for Ciarra, high functioning enough to be in the typical kid sphere, yet disabled enough to be in the disabled world. Ciarra might not be able to articulate EVERYTHING she sees and hears, but she thankfully can tell me a lot. I wonder what its like to be someone SO intuned to emotions and feelings and other peoples pain and see the things she surely sees? Sometimes the indignities of disability are harsh. I know Ciarra is TRULY beloved by her teachers and aides, I hear it often..she is funny, smart, engaging, the life of the classroom. One teacher told me that another kid says "she ROCKS!" often...and he smiled telling me that he agreed. Like Ciarra, I can read body language really well. I know these people love my child. But do they see what she sees? Do they feel her compassion and sadness for others who aren't blessed with her gift of gab? I wonder.