Willowbrook - A Sad History Lesson

I was a history major in my undergraduate education. I am always drawn to history and the stories of people at certain points in time. Now that I have Quinn in my life my history lessons have taken an interesting twist. I have started to study how our country has treated those with cognitive disabilities. I ordered an interesting documentary from Amazon (Unforgotten: Twenty-Five Years After Willowbrook) and I am admitting to the rest of the class that I have not fully watched it. But I have watched the special features which included a 1972 investigative report by Geraldo Rivera and did some research on the internet. I can't wait to learn more after watching the full documentary, but I have decided to share what I have learned thus far in order to make my history professor Dr. Cedar proud (always the A student I am).

Willowbrook State School was opened in 1947. It was a state-supported institution for children with cognitive disabilities. It was located in Staten Island, New York.

In the 1960s there were unethical medical studies conducted at Willowbrook on the population of patients there. Between 1963-1966 medical researcher Saul Krugman intentionally infected children placed at Willowbrook, either orally or by injection, with hepatitis in order to study what would be the most effective treatment. Yes, you read that right, he intentionally made these children who were cognitively disabled sick. Fellow history majors or history lovers, here is an alert - doesn't this sound somewhat similar to the Tuskegee Syphilis Study from 1932 to 1972, although in that situation African American males with syphilis were not treated when they could have been just because the researchers wanted to study the impact race had in the progression of the disease. In both of these situations we unfortunately learn that some researchers and others in society did not place much worth upon anyone of diversity, whether it be due to race or cognitive disability.

In the 1970s Geraldo Rivera (who at that time, pre-Al Capone's vault - remember that?, was an investigative reporter in New York) conducted a series of investigations at Willowbrook. This is what I watched on the special features of my dvd. Very very sad and difficult to watch. But I had to watch it. I can't help it. I need to see these things and know about them. The investigative report makes the institution where Molly Daly (from Where's Molly - discussed in a previous post) was placed look very mild. At Willowbrook, there were deplorable conditions such as children running around with no clothing, lying in their own feces for hours and hours, having no stimulation, overcrowding, and abuse. I never knew this about Geraldo that he did this wonderful thing of bringing this story to the public. Why didn't I know this about Geraldo? I kind of feel like I misjudged him all these years. After Geraldo's report, changes slowly followed. You know how bureaucracy is. There was a class-action lawsuit. The publicity of Willowbrook also contributed to the passing of the Civil Rights of Institutionalized Persons Act of 1980. Willowbrook ultimately closed in 1987. Now a college campus stands on a place that once was a state-sanctioned place for mistreatment of those with cognitive disabilities. I wonder if those college students really know what once went on where they walk and learn? I wonder if they are taught about awareness and advocacy for those with disabilities? Maybe...because there is the Institute for Basic Research in Developmental Disorders there by the campus. Maybe there is some regret for past wrongdoings.

And the biggest thing I wonder is why didn't I know this before? Does your average person know about Willowbrook and it's history? Have they seen Geraldo Rivera's report? No offense Dr. Cedar, but had I known about this maybe I could have studied this for my independent study senior year. Here I was born in 1971. While I was safe and sound - fully clothed and loved - in my home growing up, people were suffering at Willowbrook. People (who were very similar to my now daughter) were laying naked curled up in a ball with no care from staff for hours and hours and hours. They had to eat a full meal shoved in their face in five minutes or less because that is all the time that the staff had for them. And forget about teaching self-help or doing early intervention. And while I was growing up I was completely clueless about all this happening right here in my own country. Nothing like having a child with a disability to really kick start your education.

-Karyn

Smiles and Trials

In the short time we have been on our journey of being parents of a child with special needs, I have learned about the highs and lows of intervention services. Much to our disappointment our county offered us a very limited amount of service. In my personal opinion, this is disgraceful given that research has indicated the impact early intervention can have on the later functioning of individuals with Down syndrome. But I guess there are other more important areas for our county to spend money on than my little Quinny. This is a difficult realization to a parent.

Thankfully we have met wonderful individuals who could advise us and we were able to do some research and find out that we could go private for the majority of our services. So you do the comparison:


What the county wanted to give us: Once a month early educational service and once a month physical therapy (which I had to fight for by appearing to be a "difficult" and demanding mother).

What we get now: Once a week physical therapy, once a week speech therapy, once a week occupational therapy, and once a month early education service.

So what do you think, which one is better?

Luckily we found that our insurance would cover so many sessions and then a State program called Katie Beckett will pick up the rest.

Easy, right? Well, not exactly...

The State program is slow in approving things, like a walker for Quinn. Quinn's physical therapist really wants her to have one at home. Quinn has been doing an awesome job using the walker in therapy and it will help her learn to walk, but the State doesn't want to pay yet. They want to wait until she is MORE delayed and then maybe, yes maybe, they might pay. Again, who cares what the research suggests and that this may be of great benefit to my daughter. Going back again to the sad realization as a parent.


Well that is the trials part, but now the smiles...Quinn's physical therapist is a BEAUTIFUL person and she has taken it upon herself to help find Quinn a walker. She contacted families that she knew had one that they were no longer using, and it looks like we will be able to borrow one from a family she knows. Also another smile...a BEAUTIFUL family that we don't know who are helping us out because they know the struggle.

The things you learn having a child with the disability...

Sometimes the priorities of others unfortunately do not include your child. Like sometimes people are told to terminate a pregnancy because of a disability. And sometimes they don't want to give you services that will help your child long-term. Or sometimes you hear an insensitive joke or lyrics to a song. You just learn that there is still stigma, and although we have come a long way - we have some distance left to go.

You have to fight for services. This may make you seem as a difficult pain in the hind end to the all-knowing professionals. In an interesting twist of fate, however, I am one such professional (a psychologist) and I have become humbled by this experience. I am embarrassed to admit that there was so MUCH that I didn't realize until Quinn came to my life. This is again an example of Quinn's wisdom - to put me in my place. Anyway, my thought about all of this is that you have to constantly be learning, researching, and advocating to help your child. What are families who just can't do this left with? Hopefully they are not just left with the crumbs.

And - this is the light at the end of the tunnel - sometimes you meet the most wonderful people who go above and beyond what they need to do to help you. It is from these people that you do see that somebody values your child and you get some hope. You get a feeling that things may be ok after all. God bless Quinn's physical therapist - we were so blessed to get to know Sarah, a truly beautiful woman.

-Karyn

Quinn Island

I shared Welcome to Holland with all of you, but there is another analogy that I would like to make to describe my experience more fully. To me, having a very young child with a developmental disability is like being on an island. It is a beautiful, calm place of peace. When you are on the island, alone with your child, everything is so clear and calm. As you hold and look into the eyes of your child, it is just love that pours over you. It is the best feeling in the world. You just enjoy the beauty of the place where you are. You know your exerience is unique and you really value it. But, unfortunately, you are never allowed to stay that way. You have periodic outsiders from the mainland who come along who tell you all about the mainland – reminding you of what you are missing by being on this island. They keep reminding you that your experience will be different from others through their direct questioning of where your child is in developmental milestones. Your heart goes to the mainland – you really wish you could travel there and experience life there, see how it is different, but you fully know that you just can’t ever go there. It just isn't a possibility. You know your child will be different than the norm - there is no getting around that no matter what you try. Your heart aches, and you just want to go back to being alone on the island without a care for the mainland.

In addition, on this island you have periodic thoughts about the future. Worries about what it will be like as you stay on this island longer and longer. Worries about what your child will do in the future. What will her functioning be? What she can and can’t do? She probably won't be able to live the exact life I have. Certain things will probably just not be a possibility. It all depends upon her functioning which is just a big question-mark at this phase. Anything can trigger these thoughts, things that the average person would never even think about will send you in this tailspin. To you, it is like you just want to deny the future and only think about the moment you are in – this is the only thing that brings you comfort and peace. You desperately want to just stay on the island and the beautiful moment that you are in, but periodically all these forces just seem to work against you.

-Karyn

Meet Another Quinn's Crusader: Aidan, Age 4

Quinn has another big brother, Aidan, age four. He will be her protector; I can feel it. Anyway, with Aidan I notice something way cool - he doesn't really seem to think that Quinn is different than the rest of us - she is just his sister and someone that he loves. We have as a family started doing more with the Down syndrome community, so we are at a lot of events where there are people with special needs. Does Aidan notice anything different about them, no. To Aidan, they are people just like the rest of us. I think about this a lot and how this is EXACTLY what I want him to do. He does "know" that his sister has Down syndrome because the other day the term was mentioned and Aidan said, "Oh Quinny has that." He knows, but he treats her the same. That is my dream for my little girl and her big brother is already doing that for her. Another awesome thing that Aidan said about Quinn was that she is a pretty princess. He just knows how to get at my heart.

-Karyn

A Short Film to Watch

If you go here, you will see an excellent short film, Be My Brother. It is very entertaining and relates to Down syndrome.

http://tropfest.ninemsn.com.au/?videoid=79896813-777c-4bfc-832a-5f94b692ef53&tab=1


-Karyn

Meet an Advocate: Riley, Age 8

My oldest son, Riley, has become an advocate for individuals with special needs. He first found out that his baby sister had Down syndrome while I was pregnant with her. For anyone who hasn't met Riley, you must know that he is a very sensitive, gifted child. He has a beautiful heart. Riley's response to hearing that his baby sister, Quinn, had Down syndrome was excitment and happiness. He said that then his sister would be like this little girl from our church, Grace, who also so happens to have Down syndrome. Riley always loved Grace and saw all of this as a good thing. He said we could learn a lot. See things a different way than most people. Doesn't Riley have a beautiful heart? Remember my post about Jeff Daly and his little sister Molly? Maybe we adults should take a lesson or two from the children. Sometimes they seem to have it more together than we do. While I was crying and thought my world was going to end, Riley was excited about this new possibility. He is my hero, and I have certainly learned a lot from him and will certainly continue to learn.

Recently I heard a very cool story about Riley. He has been all about educating his classmates about Down syndrome. He has talked to them about his little sister, the Buddy Walk, and even had his teacher read a book about Down syndrome for story time. One day I was talking to my friend Maria on the telephone and she told me wonderful news. Maria's daughter (who has only seen Riley a couple of times) was in her Sunday School class, where there just so happened to be a little girl who was from Riley's elementary school, Hallie. Hallie shared with her class that she wanted to pray for Riley and his little sister who has Down syndrome. Riley's message of love and acceptance went all the way to this new group of children he never met. Riley is indeed my hero and if he can advocate and get his message to people he never even met, I certainly can do that too. Maybe I am doing that right now? I hope.

-Karyn

Welcome to Holland

Emily Perl Kingsley, a mother of a son with Down syndrome, wrote a awesome essay describing the experience of having a child with special needs. This brought me a lot of comfort when I was pregnant with Quinn and still gives me a lot of comfort today. I also love love love the following You Tube video of the essay. Enjoy! Once one is in Holland for a while, you do see the beauty!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




-Karyn

Where's Quinny?

Where's Quinny? Well right now she is safe and sound in her crib up in her room - sleeping peacefully with her quilts from her Auntie Sharon and Grandma Shirley wrapped around her, providing her comfort. But let's say that Quinny lived in the United States at a different time, let's say in the 1950s, where would she be when she was 16 months old? I really really hope the answer would be the same - that she would be in her crib, but in our country in the 1950s the norm was radically different than it is today. Would I have been brave enough to do the same thing as today even if it meant going against the norm?

A great documentary to watch is Where's Molly (2007). This is where my original question, the title of this post comes in. In Where's Molly, Jeff Daly was a six-year-old boy who loved his little sister, Molly, more than anything. He was a fabulous big brother, like my boys Riley and Aidan. Well right before Molly turned three, her parents learned something about her from medical doctors. These doctors told Molly's mother and father that Molly was severely cognitively disabled and highly recommended that they place her in an institution and forget about her. They gave the family no other support, no other help (not much of support for such things existed in those days). Molly's mother did just that - tried to forget about Molly, but Molly's father tried to visit her for a while until he was told by the staff that it was better if he didn't come (it upset Molly too much when he had to leave and she turned to self-abuse). Well the saddest part of the whole story is that one day Jeff had a little sister, and the next day she was gone. How could a six-year-old cope with this? He was forbidden by his parents to talk about her. It was just like she vanished, even the memory of her. This was a prime example of denial.

This documentary is a powerful depiction of a very sad part of our history, a time when there was a great stigma on having a child with special needs, even a belief that having a cognitively disabled child somehow reflected a problem that existed in the parents. I don't think Quinn is any reflection upon my weaknesses, in fact she is the reflection of everything good in me and my family. But those were unfortunately the beliefs of that day. If you watch this documentary, and I highly recommend it, be sure to get out the tissues. There are scenes from the institution (an advertisement showing their "great" services) and these scenes are horrific. Little children just lying in their cribs, sitting doing nothing on a porch, supposedly getting the greatest "care" possible with no families to love them. There are a lot of little ones with Down syndrome in the footage (although Molly does not have Down syndrome) and this is the most heartbreaking part to me - for I see Quinny in their faces - in their lonely, neglected faces.

But it ends well for Molly and Jeff; despite the years that were stolen from them, this is a story of love and survival. After Jeff's parents died, he found information in their files on Molly's whereabouts and reconnected with her. She had since moved from the institution, which thankfully closed, and into a group home. His love for her is such a beautiful thing to see in the movie. Riley and Aidan will know the same love with Quinn, without having it ever stolen from them. And now Jeff and Molly advocate for others, showing the true strength of families of children with special needs.

But such a thing would never happen today, right?

There are other countries like Russia, Ukraine, and Bulgaria (and even more) where institutionalization of children with cognitive disabilities is still the norm. Check out this website, http://www.reecesrainbow.com/ where you will see wonderful people who are trying to find these children homes. Maybe they will move you to help in some way.

But we, in the United States, are too civilized for such a thing to happen, surely? We have come a long way in our tolerance of individuals with cognitive disabilities, right?

In the US there are more and more babies with Down syndrome who are now being prenatally diagnosed. We were one of them. A prenatal diagnosis isn't necessarily a bad thing. For us, it was a blessing. It allowed us to meet some awesome people and to prepare ourselves for this journey. But it is estimated that 92% of the babies who are prenatally diagnosed are terminated. How much this option is pushed really depends upon your medical care. Thankfully we had very open-minded doctors who didn't push this option. They were very positive and balanced in the information they provided us. But some other families can feel more pressure to terminate like Molly's parents felt in institutionalizing her. True, some of these babies may have significant health concerns. True, abortion is also legal at this time. But what gets me is this, Quinn is perfectly healthy and beautiful. She was a baby that we wanted to have and was planned. I also did not experience any life-threatening complications with her. But still Quinn could have been terminated for nothing more than having Down syndrome. This does happen. A lot. Now don't fear any liberal readers who personally know me out there, I am still my liberal self (and don't wish to get in a pro-life/pro-choice debate here), but I see this as becoming a different way people in the US have tried to deal with this supposed "problem." A different kind of denial - not the same as shipping them off to institutions, now instead we deal with the "situation" before they are born. Sounds horrible, doesn't it? But could it be true? Maybe. I hope that it is not, because that is so sad and what would that say about us?

Happily though I know where Quinny is and I am blessed to have her.

-Karyn

Global Day to Eradicate the R-Word

Mark your calendars because March 31, 2009 is the Global Day to Eradicate the R-Word! It is so important to use this day to spread awareness about how the r-word can be hurtful to families of children with cognitive disabilities. The awesome photo above is Soeren Palumbo. He was a brave high school student in 2007 and stood up and made a speech at his high school about the hurtful use of the r-word. Can you imagine standing up to talk about such a thing and possibly risking your social standing as a high schooler (remember all that pressure of high school)? Why did Soeren do it? Because of his love for his younger sister. I hope someday Riley and Aidan will do the same for Quinn if they feel they need to. That is what this is all about, trying to get the message out there. If you haven't seen this speech, you should watch it:



Soeren is teaming up with others to get the word out about March 31st. Please do your part and help with this too. This may mean telling others about this day, educating someone on how the r-word can be hurtful, maybe even sharing Soeren's speech.

This is important to me because tonight I had a thought while holding Quinn - how could anyone call this beautiful face the r-word?

But the fact of the matter is that somebody, somewhere will. To me that is so hurtful. Who wants their child to be the butt of someone's joke. This is a little girl who just wants to be loved and to love others. She is my beautiful baby girl that I just want to protect. So I must do something, and here it is...Now I recognize that there are some people who will never get it no matter what we say or do, but there are some who will. And maybe if I get the message out there, someone will become educated, will become more sensitive, and they will know the power of Quinn like I do. Every little bit helps...

Thanks,

-Karyn

Welcome

This blog is about my family and our journey with having a child with a diagnosis of Down syndrome. At 18 weeks during my pregnancy with our third child, Quinn, we received a prenatal diagnosis of Down syndrome after I had an amniocentesis. It was a very difficult time. Neal had been laid off of his job, and I was working two jobs. My career involves helping others through difficult times and here I found myself in one of the most difficult times in my life. There were many tears, relationships with some family and friends were tested, other already established relationships became closer, and new beautiful relationships with people I would never have met were formed. I found that if I allow people to help me, I can get so much from the generosity of others. Part of that help came from the internet of all places. Seeing the beautiful faces of children and families with children with Down syndrome and seeing the joy of their lives helped me so much. So the decision came that maybe just maybe I can help someone though this little blog. So it starts...

Sometimes it is the most important moments in your life that are the ones that you thought would be your worst nightmare. These are the times you dreaded, that you never ever wanted to happen to you. I remember distinctly being in high school and learning about Down syndrome. Of course things were different back then, positives were not as discussed like they are today and the life expectancy was a lot shorter due to reduced medical care. But I remember sitting in class thinking to myself, "That would be so sad to have a child like that." But here is a moment that I would never have sought out and it is one of the most salient moments of my life. I have learned an important lesson, sometimes it is the moments that were thrust upon you, that are the ones that make you a better and stronger person and bring the most joy in your life. Quinn is wise and she is just what I needed in my life. I hope you don't mind my sharing this with you...

-Karyn