Flo & Kay

Last night I watched a documentary on TLC called Flo and Kay: Twin Savants. I am kind of drawn to such programming given the combination of my love of documentaries and now my love about learning about disabilities. Flo and Kay Lyman are identical twins who are autistic and have special savant abilities (i.e., able to calculate the day of week for any date; memory of artists of songs from the 1960s-1980s; tell you the weather on any date; and memory for details related to their obsession Dick Clark). Flo and Kay’s abilities are very rare – it is estimated that this would occur in only 10% of those with autism. The part of the documentary that I was drawn to was their family and how they related with Flo and Kay. Flo and Kay’s mother had great difficulty accepting her daughters. The girls were born in 1956, so this was a time of isolation and silence about having a child with special needs. In addition, Flo and Kay’s mother also had some mental health difficulties of her own. Shockingly, at one point she even tried to commit suicide and end the twin’s lives by having all three of them put their head in the oven. This was stopped by Flo and Kay’s younger sister, Jane, who eventually became their caregiver. Flo and Kay’s father coped through withdrawing and isolation from the family. He kept his distance. After their parent’s death, Jane and her family gave Flo and Kay a great life for many years – and Flo and Kay just loved living with them in Florida. But then tragedy struck, and Jane died suddenly from a heart attack. Jane’s husband contacted Flo and Kay’s brother in New Jersey to take them, as he believed that they should be with their family. This brother and his wife were not very thrilled about having Flo and Kay live with them. Actually while I was watching this it was more my perception that it was the sister-in-law of Flo and Kay who was the most upset about them living there. This really emphasized what a beautiful, giving person Jane was. I really hope my boys are like this. I did begin to think about how there is something I can’t control – the reaction of who my boys choose to spend their lives with – how will they see Quinn. I really hope, however, that through teaching my boys about the importance of respecting and loving those with disabilities that they will only choose to be with someone who would also do the same thing.

If you are interested in this documentary, you can watch a clip here.

Phillip's Egg

I found this on downsyn.com (posted by Vonda - thanks, Vonda!) Happy Easter everyone! Hope you enjoy this story!

Phillip was born with Down Syndrome. He was a pleasant child....happy it seemed, but increasingly aware of the difference between himself and other children. Phillip went to Sunday school faithfully every week. He was in the third grade class with nine other 8-year olds. And Phillip, with his differences, was not readily accepted. But his teacher was sensitive to Phillip and he helped this group of eight-year olds to love each other as best they could, under the circumstances. They learned, they laughed, they played together. And they really care about one another even though eight-year olds don't say they cared about one another out loud.

But don't forget. There was an exception to all of this. Phillip was not really a part of the group. Phillip did not choose, nor did he want to be different. He just was. And that was the way things were.

His teacher had an idea for his class the Sunday after Easter. You know those things that pantyhose come in? The containers that look like great big eggs? The teacher collected ten of them. The children loved it when he brought them into the room and gave one to each child. It was a beautiful spring day, and the assignment was for each child to go outside, find a symbol for new life, put it into the egg, and bring it back to the classroom. They would then open and share their new life symbols and surprises, one by one.

It was glorious. It was confusing. It was wild. They ran all around the grounds, gathering their symbols, and returned to the classroom.

They put all the eggs on a table, and then the teacher began to open them. All the children gathered around the table. He opened one and there was a flower, and they ooh-ed and aah-ed. He opened another and there was a little butterfly. "Beautiful!" the girls all said, since it is hard for eight-year old boys to say "beautiful." He opened another and there was a rock. And as third graders will, some laughed and some said, "That's crazy! How's a rock supposed to be like new life?" But the smart little boy who put it in there spoke up: "That's mine. And I knew all of you would get flowers and buds and leaves and butterflies and stuff like that, so I got a rock because I wanted to be different. And, for me, that's new life." They all laughed.

The teacher said something about the wisdom of eight-year olds and opened the next one. There was nothing inside. The children, as eight-year olds will, said "That's not fair. That's stupid! Somebody didn't do it right."

Then the teacher felt a tug on his shirt, and he looked down. "It's mine," Phillip said. "It's mine." And the children said, "You don't ever do things right, Phillip. There's nothing there!"

"I did so do it right!" Phillip said. "I did do it right. The tomb is empty!"

There was silence, a very full silence. And for you people who don't believe in miracles, I want to tell you that one happened that day. From that time on, it was different. Phillip suddenly became a part of that group of eight-year old children. They took him in. He was set free from the tomb of his differentness.

Phillip died last summer. His family had known since the time he was born that he wouldn't live out a full life span. Many other things were wrong with his little body. And so, late last July, with an infection that most normal children could have quickly shrugged off, Phillip died.

At his memorial service, nine eight-year olds marched up to the altar, not with flowers to cover over the stark reality of death....but nine eight-year olds, along with their Sunday school teacher, marched right up to that altar, and laid on it an empty egg....an empty, old discarded pantyhose egg.

And the tomb is empty!

The Scrapbook - Photo 5

Here is the next part. If you haven't read the beginning, here are the links - photo 1, photo 2, photo 3, and photo 4.

Part 5:

The next section in the scrapbook comes from my undergraduate college years. We see photos showing different, new experiences which expand my experiences and understanding of diversity. Having come from a pretty homogeneous background, I finally met new people who had different backgrounds and experiences. Little did I know that this would later impact me with Quinn, for disability is just another area of diversity, just like race, gender, age, and sexual orientation. In college I learn about special education law – that children ages 3-21 with disabilities are entitled to a free, appropriate education in the least restrictive environment. I in a cognitive sense understood that concept and set out to witness it firsthand in my fieldwork experience in education. This experience involved spending time in the special educational programs at a local high school. Unfortunately what I saw in my own personal experiences in middle and high school were apparent there – seclusion, limited contact with other students, and stigma. I was intrigued by the children in these programs, but my heart also felt some pain and I realized that I didn’t fully emotionally understand the experience that I was witnessing. I wanted to distance myself. How could I fully understand this? I was just an outsider and had the belief that parenting a child like this would bring only pain. Today I have a better understanding of the parenting piece, and I hope today things are different when it comes to the educational piece, for 15 years have passed since that experience. I think, though, that I see something in this photo now – I see the unfortunate difference between policy and reality. It is one thing to talk about the rights of individuals with disabilities and cite law while sitting in the classroom or removed from the experience – but it is entirely something different to witness the acceptance and inclusion in the eyes and hearts of students and faculty when it comes to how they look at your child. I hope I get to witness this for Quinn. I hope that when I look into the eyes of her classmates and teachers that I see love and acceptance. I hope that the school values her and learns from her as much as I have. And I hope that any fieldwork students in education who happen to be in her school can clearly see something different that I did not see when I was there.

-Karyn

A Must Read

Please go here and read this post. It is so important. Thank you!

-Karyn

It's Contagious

Will You Be Like Johnny Today?

Last night I attended a spring concert at Riley's school. Looking around the room at the little girls it got me thinking about what Quinn might be like when she is Riley's age and then older as an adult. What will she do with her life? I was feeling a little sad and uneasy - because of the uncertainty, so I went back to this video that I saw a while ago. It made me feel better. You never know what impact a person may have - and it isn't always connected to their job title, it is more connected to their character and what type of person they are. We should all inspire to be like Johnny in this story.

God Doesn't Make Mistakes - Steve Moser

The Scrapbook - Photo 4

This one took me a while to do. It was more difficult to go back to. If you haven't read the other parts, here are the links - photo 1, photo 2, and photo 3.

Part 4:

The next page is one that is worn. I keep going back to this time since Quinn entered my life. The photo is of me in high school, sitting in biology class. The teacher is talking about something interesting today, about this thing called Down syndrome. Normally I am bored to tears. Unfortunately, I was an underachiever at that time – rarely interested in what I was learning. Thankfully that changes in college. But this is a lesson from high school that I have kept will me for over 20 years. It was about something of interest to me, and although I didn’t know it at the time – of great significance. This topic of Down syndrome on that day in biology class makes me think about the extended family member at the Father’s Day reunion and the children in the cafeteria in middle school. It is rooted in my early experiences. It makes me think about the stereotypical haircut, glasses, and clothes. The teacher is telling us about what causes this – how it could happen to anyone. We learn about the dreaded mental retardation. I think how scary this must be given the fact that it can strike anywhere and at anytime, when you are just expecting a little one in your life – at a time when there should be happiness. Then the teacher continues and tells us that the life expectancy of individuals with Down syndrome is 25-years-old. This has stuck with me all these years – the life expectancy is only that long! Imagine only 25 years with your child. Then there is the thought that I have gone back to so much in the time Quinn has been with me – the reason why this page is so worn – “It must be sad to have a child like that.” Denial and egocentrism sets in, “Never mind, that won’t ever happen to me anyway.” I move on off that thought and into my own world again. How foolish I was. How many high school students today think the same way, only to fast forward in time and now learn that yes it will be you? Although this isn’t logical, I do believe that Quinn was my fate. But now looking back on this lesson in biology class, I know that times have changed. The teacher didn’t tell us that the reason why the life expectancy was so low was because the medical profession didn’t think it was worth their time to provide needed treatment to this population. They were mentally retarded after all, so why bother. Sad, but it was the thought of the time. The teacher didn’t tell us about institutionalization, forced experimental treatments, and other mistreatment that this population had to endure. No, the lesson was missing important information. But now I have a better teacher than I ever did in high school. I have a teacher that I am learning so much more from – the truth, the facts, the good, along with the bad. I have Quinn. And for this I am thankful. If all I ever knew about Down syndrome was from that biology class that day in high school, what kind of person would I be? I don’t even want to know.

-Karyn

Use Your Voice Too

These people are using their voice, how about you?

Touched

Last night I was feeling down after discovering the whole story of Hasbeeb Chishty and Denton State School (posted here). I just felt discouraged, like there is so much to fight against. So to escape these sad, frustrating thoughts, I was holding Quinn. I was looking at her beautiful skin, beautiful face, loving her, when I started thinking about how I saved her. I don't mean to sound narcissistic - please don't take it that way, what I am meaning is that with a prenatal diagnosis I could have terminated and didn't. So it was because of my decision, my choice, that she is here. This comes in my mind now and again, and may be the usual experience of those who had a prenatal diagnosis. I never contemplated termination at any time prenatally - I just knew that my girl had to be a part of my life. Thinking about the above made me realize that I have already done something to help - I have this little girl who exists and will bring awareness and advocacy to those who meet her. I didn't feel so hopeless.

Just as I was thinking about the above, Quinn looks up at me. It is hard to describe what it is like when she looks at you in the eyes. Both of your eyes meet, and it is a very intense feeling. I feel like she is looking into my soul. She then grabs my face with both hands and kisses me on the lips. She does this twice. In that moment, I felt peace, love, and the presence of something bigger than Quinn and I. I thought about how some people call individuals with Down syndrome angels. They believe they have a higher connection with God. I'm not sure if I necessarily believe that. But I do believe that what happened last night was for a purpose. It was to let me know that I did the right thing - I am doing the right thing. I was touched. I had tears in my eyes and it was a beautiful feeling.

-Karyn

Bernard Carabello: A Hero & A Cry For More Heros

Bernard Carabello is a hero. If you are unfamiliar with Carabello, let me tell you a little bit about his story. Carabello was placed at Willowbrook State School in 1953 at the age of three-years-old. He ultimately stayed there for over 18 years. He has cerebral palsy, and was misdiagnosed by doctors as cognitively disabled. This led to his placement at Willowbrook, a state school for individuals with cognitive disabilities. Carabello was neglected and abused while at Willowbrook. He met Geraldo Rivera in the early 1970s through an ex-Willowbrook physician who wanted to get the truth out to the public about the institution. Carabello snuck off-grounds to meet with Rivera, and was ultimately featured on Rivera’s investigative report about Willowbrook. Following this interview, Carabello was threatened by staff to tell them what he told Rivera, and he was instrumental in the school’s ultimate closure. Carabello has been called the father of the self-advocacy movement. He is a key-note speaker and consultant. I appreciate Carabello for what he did for “our” children, which includes those with Down syndrome. He spoke out and gave those placed at Willowbrook a voice. Thank you, Bernard Carabello. Please watch this great man’s story.


Funny videos

The unfortunate thing is that I can’t just leave this post on a good positive note, celebrating an inspirational figure. It kills me that I have to now say more. Why can’t Carabello’s work be enough? No, more still needs to be done. To illustrate this sad point, I share a very sad case. No, this did not happen, years and years ago. I am not going to talk about a time from the past or another country. The date starts in 2002 and spans for six years. And this occurred right here in the United States. In 2002 there was a violent incident by a staff, Kevin Miller, at Denton State School for the cognitively disabled in Texas. Miller brutally beat a resident who was placed at Denton. As a result of this assault, Hasbeeb Chishty, suffered extensive injuries and became physically disabled. In addition, Chishty almost died. It took two-and-a-half years before they found out that it was Miller who was responsible. He ultimately confessed. The school, however, spent considerable time maintaining that these injuries were because of a seat belt – consider this, Chishty was found in bed soaking in his own blood and urine. For six months, he was in intensive care with massive internal injuries, and a bruise in the shape of a footprint was found near Chishty's groin. Does this sound even remotely like an incident caused by a seat belt? Furthermore, the family had to leave Chishty in the same institution for six more years until the State of Texas agreed to pay for his care at home. Imagine the fear of leaving your child in a place where he almost died because you had no other options. His family didn’t have the resources they needed to care for him – especially now considering the injuries caused by Miller. Now Chishty is home, but problems continue because the State’s care within the home is considered by the family as inconsistent. Think maybe this is an isolated incident? The Dallas Observer reviewed more than 800 pages of disciplinary records covering 11 state schools in Texas and found that over the last five years there is a continued pattern of abuse and neglect. This is a story from Geraldo Rivera on Chishty’s situation prior to his move home.



Bottom line - we need all the Bernard Carabellos,the Hasbeeb Chishtys, and people who love them to speak up and out. This is just shameful. We can’t close our eyes to how individuals with cognitive disabilities are treated. Denial is not acceptable. I just look into the face of Quinn and I know that this isn’t an option for me anymore. Please do the same.

-Karyn

Laz-D: Rap Artist

Cam Lasley was born in 1982 with Down syndrome. He has a passion for music, and ultimately became interested in the rap genre. He has recorded his own album and if you go here you will see a documentary about him. Very inspiring and something I really needed to see today.

-Karyn

The Moment

Everyone seems to have at least one moment in their life where they are tested – where they have a choice in what they do, how they respond, and how they cope with something they believe is unfair that they were handed or dealt. It is through their actions at this point that they determine on which path their life will progress. It is also through this response to the stressor that they have the opportunity to show their character and level of integrity. These involve difficult moments in their life where they maybe want to give up, but can choose to still persevere. How you respond shows your power and your choice. I am lucky because the moment for me is clear. What is your moment?

Did You Assume?

Do you have any assumptions about Down syndrome? Maybe. Or maybe not.

Georgia's Smile by Phil Davidson

I love this one. It is from Phil Davidson's album Edge of it All. The best part to me is,

And you think you've been cursed
And you ask the big questions why
But I think I've been blessed
Georgia when you smile

Thank you Phil Davidson for this beautiful song!