I love her eyes in this photo.
-Karyn
What day is it, even?
3 years ago
Saturday, April 25, 2009
Friday, April 24, 2009
Leper, Plague, & Acceptance
What is normal? How do we identify what is abnormal or deviant? Why does difference and deviance make some in society so dang uncomfortable? In The Short Bus: The Journey Beyond Normal, Jonathan Mooney explains his view of how deviance is dealt with in our society: “I believe there are two fundamental paradigms for controlling deviance in our culture. In the model of the leper, the deviant is exiled from the community. But the second, the truly defining model for our culture, is the model of the plague. In the plague model the sick are constantly being watched” (p. 81).
Mooney’s model of the leper is apparent in the use of institutions. In the nineteenth century, French educators of the deaf and blind, established training schools. Initially the goal was to assist these individuals and then reintegrate them back to society, but the latter part of this was lost along the way. Mooney states: “In the mid-1900s it was common for people of all political stripes to talk about the ‘menace of the feeble mind.’ Cognitive minorities were no longer gentle fools. They were dangerous and in need of ‘total institutionalization’” (p. 153). Enter the time of the leper.
But in the 1970s there was a paradigm shift. More and more individuals with cognitive disabilities were kept at home and in the community. This was an improvement from the time of the leper, but in entered the plague. People with disabilities were noticed, stared at, watched, monitored, assessed, evaluated, diagnosed, labeled, etc. This still happens, and I do all these things too. But with Quinn, I see the importance of not just putting people in boxes. I am learning more about true acceptance and expanding what I view as being normal, for as Mooney states: “Disability and normalcy are ideas we create as a culture and society and something we can transform” (p.259).
Will there be a third paradigm of acceptance? That is what we are working towards – one step at a time. We can transform how we see disability in our society.
-Karyn
Mooney’s model of the leper is apparent in the use of institutions. In the nineteenth century, French educators of the deaf and blind, established training schools. Initially the goal was to assist these individuals and then reintegrate them back to society, but the latter part of this was lost along the way. Mooney states: “In the mid-1900s it was common for people of all political stripes to talk about the ‘menace of the feeble mind.’ Cognitive minorities were no longer gentle fools. They were dangerous and in need of ‘total institutionalization’” (p. 153). Enter the time of the leper.
But in the 1970s there was a paradigm shift. More and more individuals with cognitive disabilities were kept at home and in the community. This was an improvement from the time of the leper, but in entered the plague. People with disabilities were noticed, stared at, watched, monitored, assessed, evaluated, diagnosed, labeled, etc. This still happens, and I do all these things too. But with Quinn, I see the importance of not just putting people in boxes. I am learning more about true acceptance and expanding what I view as being normal, for as Mooney states: “Disability and normalcy are ideas we create as a culture and society and something we can transform” (p.259).
Will there be a third paradigm of acceptance? That is what we are working towards – one step at a time. We can transform how we see disability in our society.
-Karyn
Autism: The Musical
An excellent documentary is Autism: The Musical. What better time to mention this film than Autism Awareness Month? This film follows five children, all with a diagnosis somewhere on the autism spectrum. These five children, along with other local children, are working with the Miracle Project, a musical theater program led by Elaine Hall (mother of one of the children featured in the documentary). The most powerful parts of the film are the narratives from these five families. These perspectives enrich your understanding of not only autism, but what it is like to parent a child with a disability, which is a personal interest of mine.
Every single time I watch this film, I am drawn to the story of Lexi, a middle school girl with autism. Lexi has a beautiful singing voice and a gorgeous smile. Her mother, Hillary, is open and honest about her own struggle accepting the diagnosis of autism. I am brought to tears by her story because I can see elements of myself in her story. At one point in the film, Hillary talks about how Lexi's father once told her, "It's not up to us to judge the quality of [Lexi's] life." To that, Hillary readily admits "I find that a challenge." I know this struggle. My adult life has focused on the concepts of accomplishment and excelling. It is very difficult for me to think about what Quinn's future may hold and how her life may be radically different. I try to either stay in denial or think positively about this subject, but doubts still seep in. Even when I have expressed these feelings to other parents of children with special needs, I have at times felt judged. But I have to go back to Hillary to remind myself that there is nothing wrong with these feelings. Everyone who is on this journey is unique and goes at their own pace, just like our children. Hillary's bravery in openly discussing her feelings brings comfort to me. Thank you, Hillary!
Other powerful moments in the film exist in the portions showing the experiences of these five children. Wyatt, a young boy who is often troubled by bullies, talks about what it is like to go into his "own world." This gives us an unique perspective that isn't often shared. Another powerful moment again involves Lexi. Hillary asks Lexi what is autism. Lexi, who at the time is using the computer to help express herself, types: "Autism is something that is damaged." Imagine having this view about yourself. Imagine the look on Hillary's face when Lexi said this. This is pain like no other. Considering the societal messages we receive about what is acceptable and "normal," this is not surprising. Sad, but not surprising.
Listen to Lexi yourself. This is her message to the viewers (found in the companion guide of the dvd): "My favorite subject at school is reading, math, science, and lunch. How are you doing? I had a wonderful time in the Miracle Project. I sang 'Miracles.' I like to dance. I like to sing. I like to go to the coffee store, the beach and I like to go to Ronnie's to drink Sprite, eat a jack and cheddar omelet, black beans, side of chips, toast and then I'm full. When I am a grown-up, in the future, I will be a teenager, I would become a woman and I would be like Britney Spears."
While Lexi's mother tells me that it is ok to sometimes have difficult feelings about Quinn's diagnosis, Lexi shows me that I have to accept Quinn for who she is and see the beauty she possesses. Both are ok.
-Karyn
Thursday, April 23, 2009
Living With a Sibling with Down Syndrome
This is a very interesting interview with Dr. Brian Skotko and 16-year-old Lizzy Myshrall on being a sibling of an individual with Down syndrome. Go here to connect to the interview.
-Karyn
-Karyn
Tuesday, April 21, 2009
Monday, April 20, 2009
Carrie Buck: Someone Who Matters
One of the stories that Jonathan Mooney tells in his book, The Short Bus: A Journey Beyond Normal, is that of Carrie Buck. Buck is not someone that he talks to, but a significant figure in history. While Mooney is traveling through Virginia, he attempts to find the state memorial to Buck, but finds out that it is not included in the guidebook of state monuments and that the staff at the historical information center have no clue about its location. This is not surprising; I don’t think very many people know about her. I know I didn’t. Another important lesson rarely included in history class.
Remember our unfortunate history related to how we treated those with cognitive disabilities? We had the sad unfortunate mistreatment at places like Willowbrook, but Buck depicts another, related, but slightly different area of our history – eugenics. This movement sought to eliminate people who were considered “defective.” Think this only happened in other countries and not here? Wrong. This movement was founded in Darwinism and sought to eliminate reproduction of such individuals, including those with developmental disabilities. Mooney points out that at one time there were eugenics departments at many US universities. In addition, at one point 28 states had involuntary sterilization laws for those in state-run institutions for the “insane, epileptic, and feebleminded.”
Carrie Buck was placed in a state-run institution. It was unclear what her disability was or if she even had one – although it was noted by those who interviewed her later in her life that she appeared to be of average intelligence. Buck was raped and became pregnant, and the institution – the Virginia Epileptic Colony – wanted to have her sterilized. In the meantime, Buck gave birth to a daughter. In 1927 her case reached the US Supreme Court. Here is what Mooney says about Buck’s case: “Evidence was presented that not only Carrie and her mother were feebleminded, but also her one-year-old daughter. Chief Justice Oliver Wendell Holmes wrote the majority decision that Carrie’s sterilization was constitutional because, according to Holmes, ‘three generations of imbeciles are enough.’ It was later shown that Carrie’s daughter had an average or above-average IQ. To this day, fifteen states still have laws permitting the involuntary sterilization of ‘defectives,’ although they are rarely put into practice” (p. 126).
Buck’s ability to have more children was taken from her given this law. Ironically she probably didn’t even have a cognitive disability. In addition, our definition of cognitive disability has changed since this time. In 1973, the criterion changed from those with an IQ less than one standard deviation below the mean (85) to those with IQs less than two standard deviations below the mean (70). This is a huge difference. Mooney states: “In plain English, thousands of people earlier classified as mentally retarded woke up one day and were no longer retarded” (p. 153). Think about how some of them might have been sterilized under the previous criteria.
After Mooney’s unsuccessful attempt to find Buck’s monument, he says the following: “I thought about the trip to find this invisible testimony to what was an invisible past. Eugenics was an ambitious attempt to normalize the population, to dehumanize the other: the defective, the abnormal, the person with a disability. In the disability rights movement there is a concept called ableism – the idea that our culture’s treatment of people with different cognitive and physical experiences is a form of discrimination. Inherent in the idea of ableism is that the marginalization of people who are different is a civil rights issue. Eugenics embodies one of the greatest assaults on the civil rights of people with disabilities. Ableism draws a line between acceptable and unacceptable human experience. Ableism is normalcy’s enforcer. As I left the office, I thought about what the first lobotomy patient had said after her frontal lobes were cut. This woman was hardly insane; she was reported to be moody and difficult. After the procedure, the lobotomist, Walter Freeman, looked at her and asked if she remembered what had bothered her before the operation. ‘I don’t know,’ she replied. ‘I don’t remember. It doesn’t seem to matter anymore.’ The operation was considered an unequivocal success” (p 128-129).
We should not forget Carrie Buck. This does matter.
Sunday, April 19, 2009
My Scrapbook: A Gift From Quinn
I look back on my life and feel there are snapshots of moments predicting the entry of Quinn into my life. It is like looking at a scrapbook and seeing events captured in isolated photos all leading up to some ultimate life altering experience, such as school photos leading to a graduation, dating photos leading to a marriage, or pregnancy photos leading to a birth of a child. In reality there was no way to accurately predict that I would have a child with Down syndrome. It is only that these events are coincidence, but I still nonetheless feel drawn to reflect on these moments given Quinn’s entry into my life.
Two events stand out even prior to my birth. When I was inside my mother, there were three potential generations all together within one body. In the small part that would ultimately become Quinn, there was an extra 21st chromosome. Little did my mother know that she would set into motion a whole series of events that would have such an impact. Quinn was there with me way back when I entered this world; she just waited until 2007 to make her grand entrance. This is the story about how she guided me and led me to greater awareness and acceptance of those with disabilities.
I learned about the second prenatal event when I was entering young adulthood. At that time, my mother shared with me a story dating back to when she was pregnant and eagerly waiting for the arrival of my birth, her youngest child. She was no longer in her 20s at the time of the pregnancy. This joyful time was unfortunately clouded by an intense social relationship, more specifically, a person who said some hurtful things about me, my mother’s unborn child. This person was talking about my mother having a child at such an "old" age and stated that my mother's child would probably be "the r-word." My mother told me that she always thought this person was jealous, for this individual wanted another child. My mother's purpose in telling me this story was to tell me how one should treat others in less hurtful ways, but now I think back to this story and reflect upon something all together different. Was my mother relieved that she didn't have a child with a cognitive disability? Did she feel she dodged a bullet? I realize that most likely she felt this way, and I don't blame her. I probably would have felt the same. I was her only child who attended and graduated college, ultimately completing a Ph.D. - so maybe my mother saw some irony in this situation. The one who excelled academically was the same one that was wished to be cognitively disabled. What does this say about that social group at the time? If you are jealous of someone having a child, perhaps you might wish them to have a child with a disability? Would it be seen as the ultimate punishment? Maybe it is all fitting that out of my mother's four children, it is I who was the one who would go on to have a child with a disability, the one that someone wished would be cognitively disabled. It seemed like fate that Quinn would enter my life. When I was waiting to enter the world I was called "the r-word," and I am now the one fighting against that same word because of my own daughter.
The next photo is of me as a preschooler watching my absolute favorite television program, Sesame Street. I loved Grover, Ernie, and Bert. They were the best moment of my day and I adored watching them in the huge television set in the living room. My mother was always in the background telling me to move back, not sit too close to the screen, or take my feet off of the television set. Although I was unaware at the time, there is another figure way back in the shadows of this photo, Emily Perl Kingsley. Kingsley was a writer for Sesame Street, and had a son who had Down syndrome. She was an advocate of individuals with disabilities and helped influence others to cast children with disabilities, including Down syndrome, in the show. So here I was watching Emily Perl Kingsley’s work without knowing that she was there and what an impact she would have on me later in my life through her essay, Welcome to Holland. Thank you, Emily Perl Kingsley, for secretly being with me since I was a preschooler. Your essay gave me great comfort when I was pregnant with Quinn.
Continuing on with the story, we turn the page of the scrapbook. We see that the next photograph comes from my elementary school days. There is a photo of myself as a young girl attending the yearly Father’s Day family reunion picnic. I look around at the crowd and see a distant relative who cares for youth who are developmentally disabled. I have seen this woman before, but do not know her name. From this photograph it is obvious what I am thinking, I want to look, am drawn to look at them, but yet feel uncomfortable – like I shouldn’t be so interested. I wonder what it must be like to care for a child who has a disability. How would that feel? Why do people do it? Who is this woman, and why does she take care of these children? I try to concentrate on the conversation happening around me to distance myself from these thoughts, but I keep going back to watch this woman and these youth. I feel uncomfortable, yet intrigued. Did I know deep down that someday this would be me? Or is this just a normal reaction when noticing those who are “different?” There is another twist of fate in my story – I was once the person who could not stop staring, and now I will be the one that others stare at.
My awkward middle school days are the next section in the scrapbook. We see me as a young girl feeling unsure about my appearance. I look around the crowd and see other students my age, some appear more self-assured and look so beautiful; I envy those students. I also see other students just like me in the struggle they are experiencing. I feel a special bond with these students. Since I am all about my peers and what they are doing at this time in my life, I start noticing a group of students in school that I really don’t remember registering in my memory before – these are the students who are in special education, more specifically students who have cognitive disabilities. I notice them at various locations in the school hanging out together with no one from regular education talking to them. For example, although I see them in the lunch room sitting across the way, there seems to be a huge canyon separating us that no one tries to pass. Because appearance and my reduced self-esteem are at the forefront of my mind, I notice these students’ clothes, their hair, the glasses, and the way they look. The stereotype becomes sealed in my mind. This is something that I regret – I had that horrible stereotype, and it won’t be until almost another 25 years that I let some of it go. It is from this memory that I become obsessed with the idea that Quinn will have style. I know in the big scheme of things this may seem trivial, but this is built upon difficult feelings from my middle school years – the time I felt most unsure of myself. I also hope and pray that Quinn will have a totally different experience in middle school. I hope that the canyon no longer exists. I hope special education and regular education students will interact and enjoy each other’s company. Doesn’t almost everyone want their child to have a different experience than they did in middle school? I certainly do, and I will do everything I can to accomplish this; for me, the stakes are too high if I don’t.
In my school days, there was a student in my grade who had a physical disability. He is also present periodically throughout this scrapbook during this time period. I looked at him at the time as an outcast, as someone who was socially awkward, as different. I unfortunately felt that different equated bad. Now I look at these photos and realize that he really wasn’t this way – that was the way that we the other, supposedly more able-bodied students made him. He was just like us, but in a time where conformity was so important, we were overly judgmental and negative towards anyone who differed. My heart aches about this. No, actually I take that back – he wasn’t just like us; he was better than us. Now looking at his photo I see someone with such great strength, determination, and heart. I am ashamed that I didn’t possess these same qualities at this time of my life.
The next page is one that is worn. I regularly go 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 Down syndrome. Normally I am bored to tears, for I was an underachiever at that time – rarely interested in the subject at hand. However, 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 woman 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 how it relates to 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? 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 and effort 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, essential 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.
The next section in the scrapbook comes from my undergraduate college years. We see photos showing different, new experiences which expand my understanding of diversity. Having come from a pretty homogeneous background, I finally met new people who had different backgrounds. 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 with disabilities ages 3-21 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 at that school – 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 and wasn’t in my future anyway. Today I have a better understanding of the parenting piece, and I hope things are different when it comes to the educational piece in the 15 years that have passed since that experience. I think, though, that I see something else 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 the 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 they are looking 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 than I did when I was there.
Now the scrapbook moves on into my graduate school days. We see a photo of me sitting in class learning about intelligence tests, the diagnostic criteria of mental retardation, and other concepts associated with the field of school psychology. Little did I know that these things would someday serve me well in my role as Quinn’s mother. In one of my first classes, we watch the film Educating Peter, about Peter Gwazdauskas, a third grade student who has Down syndrome. The film is about his full inclusion in the classroom. It was an intense film to watch – we see the other children’s reactions to Peter, which were not always positive, Peter’s aggressive behavior towards the other children, but then his ultimate success in the classroom. This film created intense debate in the class as to whether full inclusion was an appropriate option or not. I remember sitting there all quiet and unsure about what I believed. Maybe I knew deep down that it would not be so easy and clear-cut for me. Maybe I knew what would be coming without being able to articulate this into words. I sat there during the discussion feeling uncomfortable, wondering why my professor showed this film to us and thinking about the difficulty Peter’s parents faced. Now looking back, I remember that my professor also had a daughter with a disability. Maybe she showed us this film to show us the complexity of the situation – her situation. Maybe give us an opportunity to see the parents’ side too. I missed an opportunity to ask her about her opinion, her experience. I regret this. I look at this section of the scrapbook and wish I could go back and do some things differently.
There is also another photo that represents yet another lost opportunity. My first client was a mother questioning the diagnosis of mental retardation for her daughter, a young elementary-aged student. I conducted the assessment according to best practice – interview, observation, standardized testing, and informal assessment measures. All pointed to the diagnosis being correct. I sat with the mother and explained the results. I saw the pain in her face despite her strong exterior. I felt that I did right diagnostically in the case, but now know that I would have been much more compassionate in my discussion of the results. I would allow her to tell her story. I would allow her to speak more about her feelings. I would talk about strengths and support. I know now I am a much better psychologist because I have Quinn in my life, but I regret missing these opportunities to be better that were in the past.
The last section of the scrapbook involves my adult life after college, but prior to Quinn’s arrival. We see a photo of a wedding day. The photo shows the wide smiles of a newly married couple, but I now know that the smiles would be far wider had we really known the three beautiful children that we would someday have – including the one that we would chose to have despite the scare of a prenatal diagnosis. We see photos of the birth of our two sons, who are blessed to have their beautiful sister. They will become better men because of her. I now realize that during pregnancy and childbirth I was naïve and took having a healthy baby for granted. Another lesson that I learned from Quinn, for it wasn’t until my third child that I truly realized that having a child is truly a miracle – this becomes perfectly clear when you have one that has 47 chromosomes.
In this section of the scrapbook we also see photos of my work with adolescents, some of whom had mild cognitive disabilities or learning disabilities. We can see the passion I have for my career in these photos, but I sometimes missed important things, as I did in graduate school, that I now clearly see today. One area that I repeatedly miss is the hurtful use of the r-word. There is no more ignoring it for me, for I have Quinn counting on me to do the right thing. In addition, at this time, I would talk with these young people about what their experiences mean to them, including the experience of having a disability. I now know, however, that I was not as fully connected to these discussions as I could have been – in my heart and soul, like I am today. For example, recently I spoke with a young man who called himself the r-word and with tears in his eyes, asked for my opinion of him. This was one of the most significant moments of my career. I felt Quinn’s presence with me and guiding me.
Having Quinn in my life has brought more insight and reflection than I ever imagined. Some people have told me that it is their belief that I was selected to be a mother of a child with special needs. One could look at this scrapbook and think that given the moments I shared about my life. Maybe there are times when I agree with this thought – it was all meant to be. However, deep down I know this isn’t the case. It was just the roll of the die that Quinn became my daughter. It was just chance, just circumstance that 47 chromosomes came up with the roll. But I now know that I am far better off given Quinn’s entry into my life. I do think these significant moments, which are depicted in my scrapbook of sorts, impacted how I coped with becoming a parent of a child with special needs. I think everyone has these moments, whether they want to see them or not – moments that become clearer and more meaningful once some significant event happens to you. These are moments that are always with you, that shape you – that if you work through, can make you a better person. There are many tales out there that are similar to mine. I hope that all of them are told.
I love you, Quinn; thank you for going on this journey with me. Thank you for this beautiful scrapbook that you have given me. I would never have looked back on these events if it wasn’t for you. I will treasure the scrapbook you have given me always. I am honored to be your mommy.
Two events stand out even prior to my birth. When I was inside my mother, there were three potential generations all together within one body. In the small part that would ultimately become Quinn, there was an extra 21st chromosome. Little did my mother know that she would set into motion a whole series of events that would have such an impact. Quinn was there with me way back when I entered this world; she just waited until 2007 to make her grand entrance. This is the story about how she guided me and led me to greater awareness and acceptance of those with disabilities.
I learned about the second prenatal event when I was entering young adulthood. At that time, my mother shared with me a story dating back to when she was pregnant and eagerly waiting for the arrival of my birth, her youngest child. She was no longer in her 20s at the time of the pregnancy. This joyful time was unfortunately clouded by an intense social relationship, more specifically, a person who said some hurtful things about me, my mother’s unborn child. This person was talking about my mother having a child at such an "old" age and stated that my mother's child would probably be "the r-word." My mother told me that she always thought this person was jealous, for this individual wanted another child. My mother's purpose in telling me this story was to tell me how one should treat others in less hurtful ways, but now I think back to this story and reflect upon something all together different. Was my mother relieved that she didn't have a child with a cognitive disability? Did she feel she dodged a bullet? I realize that most likely she felt this way, and I don't blame her. I probably would have felt the same. I was her only child who attended and graduated college, ultimately completing a Ph.D. - so maybe my mother saw some irony in this situation. The one who excelled academically was the same one that was wished to be cognitively disabled. What does this say about that social group at the time? If you are jealous of someone having a child, perhaps you might wish them to have a child with a disability? Would it be seen as the ultimate punishment? Maybe it is all fitting that out of my mother's four children, it is I who was the one who would go on to have a child with a disability, the one that someone wished would be cognitively disabled. It seemed like fate that Quinn would enter my life. When I was waiting to enter the world I was called "the r-word," and I am now the one fighting against that same word because of my own daughter.
The next photo is of me as a preschooler watching my absolute favorite television program, Sesame Street. I loved Grover, Ernie, and Bert. They were the best moment of my day and I adored watching them in the huge television set in the living room. My mother was always in the background telling me to move back, not sit too close to the screen, or take my feet off of the television set. Although I was unaware at the time, there is another figure way back in the shadows of this photo, Emily Perl Kingsley. Kingsley was a writer for Sesame Street, and had a son who had Down syndrome. She was an advocate of individuals with disabilities and helped influence others to cast children with disabilities, including Down syndrome, in the show. So here I was watching Emily Perl Kingsley’s work without knowing that she was there and what an impact she would have on me later in my life through her essay, Welcome to Holland. Thank you, Emily Perl Kingsley, for secretly being with me since I was a preschooler. Your essay gave me great comfort when I was pregnant with Quinn.
Continuing on with the story, we turn the page of the scrapbook. We see that the next photograph comes from my elementary school days. There is a photo of myself as a young girl attending the yearly Father’s Day family reunion picnic. I look around at the crowd and see a distant relative who cares for youth who are developmentally disabled. I have seen this woman before, but do not know her name. From this photograph it is obvious what I am thinking, I want to look, am drawn to look at them, but yet feel uncomfortable – like I shouldn’t be so interested. I wonder what it must be like to care for a child who has a disability. How would that feel? Why do people do it? Who is this woman, and why does she take care of these children? I try to concentrate on the conversation happening around me to distance myself from these thoughts, but I keep going back to watch this woman and these youth. I feel uncomfortable, yet intrigued. Did I know deep down that someday this would be me? Or is this just a normal reaction when noticing those who are “different?” There is another twist of fate in my story – I was once the person who could not stop staring, and now I will be the one that others stare at.
My awkward middle school days are the next section in the scrapbook. We see me as a young girl feeling unsure about my appearance. I look around the crowd and see other students my age, some appear more self-assured and look so beautiful; I envy those students. I also see other students just like me in the struggle they are experiencing. I feel a special bond with these students. Since I am all about my peers and what they are doing at this time in my life, I start noticing a group of students in school that I really don’t remember registering in my memory before – these are the students who are in special education, more specifically students who have cognitive disabilities. I notice them at various locations in the school hanging out together with no one from regular education talking to them. For example, although I see them in the lunch room sitting across the way, there seems to be a huge canyon separating us that no one tries to pass. Because appearance and my reduced self-esteem are at the forefront of my mind, I notice these students’ clothes, their hair, the glasses, and the way they look. The stereotype becomes sealed in my mind. This is something that I regret – I had that horrible stereotype, and it won’t be until almost another 25 years that I let some of it go. It is from this memory that I become obsessed with the idea that Quinn will have style. I know in the big scheme of things this may seem trivial, but this is built upon difficult feelings from my middle school years – the time I felt most unsure of myself. I also hope and pray that Quinn will have a totally different experience in middle school. I hope that the canyon no longer exists. I hope special education and regular education students will interact and enjoy each other’s company. Doesn’t almost everyone want their child to have a different experience than they did in middle school? I certainly do, and I will do everything I can to accomplish this; for me, the stakes are too high if I don’t.
In my school days, there was a student in my grade who had a physical disability. He is also present periodically throughout this scrapbook during this time period. I looked at him at the time as an outcast, as someone who was socially awkward, as different. I unfortunately felt that different equated bad. Now I look at these photos and realize that he really wasn’t this way – that was the way that we the other, supposedly more able-bodied students made him. He was just like us, but in a time where conformity was so important, we were overly judgmental and negative towards anyone who differed. My heart aches about this. No, actually I take that back – he wasn’t just like us; he was better than us. Now looking at his photo I see someone with such great strength, determination, and heart. I am ashamed that I didn’t possess these same qualities at this time of my life.
The next page is one that is worn. I regularly go 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 Down syndrome. Normally I am bored to tears, for I was an underachiever at that time – rarely interested in the subject at hand. However, 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 woman 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 how it relates to 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? 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 and effort 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, essential 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.
The next section in the scrapbook comes from my undergraduate college years. We see photos showing different, new experiences which expand my understanding of diversity. Having come from a pretty homogeneous background, I finally met new people who had different backgrounds. 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 with disabilities ages 3-21 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 at that school – 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 and wasn’t in my future anyway. Today I have a better understanding of the parenting piece, and I hope things are different when it comes to the educational piece in the 15 years that have passed since that experience. I think, though, that I see something else 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 the 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 they are looking 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 than I did when I was there.
Now the scrapbook moves on into my graduate school days. We see a photo of me sitting in class learning about intelligence tests, the diagnostic criteria of mental retardation, and other concepts associated with the field of school psychology. Little did I know that these things would someday serve me well in my role as Quinn’s mother. In one of my first classes, we watch the film Educating Peter, about Peter Gwazdauskas, a third grade student who has Down syndrome. The film is about his full inclusion in the classroom. It was an intense film to watch – we see the other children’s reactions to Peter, which were not always positive, Peter’s aggressive behavior towards the other children, but then his ultimate success in the classroom. This film created intense debate in the class as to whether full inclusion was an appropriate option or not. I remember sitting there all quiet and unsure about what I believed. Maybe I knew deep down that it would not be so easy and clear-cut for me. Maybe I knew what would be coming without being able to articulate this into words. I sat there during the discussion feeling uncomfortable, wondering why my professor showed this film to us and thinking about the difficulty Peter’s parents faced. Now looking back, I remember that my professor also had a daughter with a disability. Maybe she showed us this film to show us the complexity of the situation – her situation. Maybe give us an opportunity to see the parents’ side too. I missed an opportunity to ask her about her opinion, her experience. I regret this. I look at this section of the scrapbook and wish I could go back and do some things differently.
There is also another photo that represents yet another lost opportunity. My first client was a mother questioning the diagnosis of mental retardation for her daughter, a young elementary-aged student. I conducted the assessment according to best practice – interview, observation, standardized testing, and informal assessment measures. All pointed to the diagnosis being correct. I sat with the mother and explained the results. I saw the pain in her face despite her strong exterior. I felt that I did right diagnostically in the case, but now know that I would have been much more compassionate in my discussion of the results. I would allow her to tell her story. I would allow her to speak more about her feelings. I would talk about strengths and support. I know now I am a much better psychologist because I have Quinn in my life, but I regret missing these opportunities to be better that were in the past.
The last section of the scrapbook involves my adult life after college, but prior to Quinn’s arrival. We see a photo of a wedding day. The photo shows the wide smiles of a newly married couple, but I now know that the smiles would be far wider had we really known the three beautiful children that we would someday have – including the one that we would chose to have despite the scare of a prenatal diagnosis. We see photos of the birth of our two sons, who are blessed to have their beautiful sister. They will become better men because of her. I now realize that during pregnancy and childbirth I was naïve and took having a healthy baby for granted. Another lesson that I learned from Quinn, for it wasn’t until my third child that I truly realized that having a child is truly a miracle – this becomes perfectly clear when you have one that has 47 chromosomes.
In this section of the scrapbook we also see photos of my work with adolescents, some of whom had mild cognitive disabilities or learning disabilities. We can see the passion I have for my career in these photos, but I sometimes missed important things, as I did in graduate school, that I now clearly see today. One area that I repeatedly miss is the hurtful use of the r-word. There is no more ignoring it for me, for I have Quinn counting on me to do the right thing. In addition, at this time, I would talk with these young people about what their experiences mean to them, including the experience of having a disability. I now know, however, that I was not as fully connected to these discussions as I could have been – in my heart and soul, like I am today. For example, recently I spoke with a young man who called himself the r-word and with tears in his eyes, asked for my opinion of him. This was one of the most significant moments of my career. I felt Quinn’s presence with me and guiding me.
Having Quinn in my life has brought more insight and reflection than I ever imagined. Some people have told me that it is their belief that I was selected to be a mother of a child with special needs. One could look at this scrapbook and think that given the moments I shared about my life. Maybe there are times when I agree with this thought – it was all meant to be. However, deep down I know this isn’t the case. It was just the roll of the die that Quinn became my daughter. It was just chance, just circumstance that 47 chromosomes came up with the roll. But I now know that I am far better off given Quinn’s entry into my life. I do think these significant moments, which are depicted in my scrapbook of sorts, impacted how I coped with becoming a parent of a child with special needs. I think everyone has these moments, whether they want to see them or not – moments that become clearer and more meaningful once some significant event happens to you. These are moments that are always with you, that shape you – that if you work through, can make you a better person. There are many tales out there that are similar to mine. I hope that all of them are told.
I love you, Quinn; thank you for going on this journey with me. Thank you for this beautiful scrapbook that you have given me. I would never have looked back on these events if it wasn’t for you. I will treasure the scrapbook you have given me always. I am honored to be your mommy.
Friday, April 17, 2009
The Short Bus by Jonathan Mooney
I have been reading this wonderful book, The Short Bus by Jonathan Mooney. Mooney travels throughout the United States in a special education short bus named Bob Henry (named after someone he met early on in his journey). During this trip, Mooney meets a variety of adults and children with diverse abilities and disabilities. This journey not only involves learning about the diversity of others, but it also involves a journey of self-discovery for Mooney. He directly faces his own difficult personal experiences in special education through buying and traveling in the ultimate symbol of abnormality and stigma in public education, the short bus. The book is centered on something that Mooney is driven to study, the danger of the concept normality. How is it that we decide who is normal and abnormal? What is emotional impact on those with disabilities to this social pressure to “fix” them and view them as being abnormal? Why can’t we look past what society views as being “wrong” with these individuals, to see what is right?
I will have many postings centered on some parts of Mooney’s book. It is excellent book I highly recommend it; if you haven’t read it already and are interested in this topic, this is a must read. I have attached a few clips from YouTube about this book. Mooney visits many individuals in the book, but of course my heart was drawn to the story of Katie Basford in Seaman, Ohio, who is a young woman who happens to have Down syndrome. There will also be a documentary about Mooney’s short bus journey, but it appears that it hasn’t been released yet. There is a clip below of the documentary which includes part of Mooney’s visit with Basford.
Thank you, Jonathan Mooney for this wonderful book.
I would like to end this post with a quote that Mooney has at the beginning of his book.
“The judges of normality are present everywhere. We are in the society of the teacher-judge, the doctor-judge, the educator-judge, the social worker-judge; it is on them that the universal reign of the normative is based; and each individual, wherever he may find himself, subjects to it his body, his gestures, his behavior, his aptitudes, his achievements. “ – Michel Foucault
I will have many postings centered on some parts of Mooney’s book. It is excellent book I highly recommend it; if you haven’t read it already and are interested in this topic, this is a must read. I have attached a few clips from YouTube about this book. Mooney visits many individuals in the book, but of course my heart was drawn to the story of Katie Basford in Seaman, Ohio, who is a young woman who happens to have Down syndrome. There will also be a documentary about Mooney’s short bus journey, but it appears that it hasn’t been released yet. There is a clip below of the documentary which includes part of Mooney’s visit with Basford.
Thank you, Jonathan Mooney for this wonderful book.
I would like to end this post with a quote that Mooney has at the beginning of his book.
“The judges of normality are present everywhere. We are in the society of the teacher-judge, the doctor-judge, the educator-judge, the social worker-judge; it is on them that the universal reign of the normative is based; and each individual, wherever he may find himself, subjects to it his body, his gestures, his behavior, his aptitudes, his achievements. “ – Michel Foucault
Wednesday, April 15, 2009
I'll Come Running by Phil Davidson
I just have to say that I LOVE Phil Davidson's music. First, I found Georgia's Smile. If you haven't checked it out, you must go here! You won't regret it!
I have ordered his CD, Edge of it All, through Amazon.com. I am patiently waiting since it is on backorder, but I know it will be worth it. Here is another song of his called I'll Come Running. Quinn, I will come running when you need me and I won't rush so much through life so that I can enjoy this moment with you. Thanks again Phil Davidson for your beautiful work.
I have ordered his CD, Edge of it All, through Amazon.com. I am patiently waiting since it is on backorder, but I know it will be worth it. Here is another song of his called I'll Come Running. Quinn, I will come running when you need me and I won't rush so much through life so that I can enjoy this moment with you. Thanks again Phil Davidson for your beautiful work.
Susan Boyle
Why does our society tend to judge a book by its cover? Why do we judge a person by their appearance or what we think is their ability or disability? We can get it so wrong that way. Perhaps you have already heard about Susan Boyle? She auditioned for Britain’s Got Talent. Boyle is 47-years-old and unemployed, and not the typical image when it comes to a recording artist. Her performance (which you can watch here) startled everyone. Turns out that Boyle has a learning disability and was ridiculed for this and for her appearance while she was growing up. Kids can be cruel. She told the hosts of Britain’s Got Talent that she never had a boyfriend and has never been kissed before. Her singing was limited to karaoke and the church choir. Here is someone extraordinary that people didn’t notice before – someone we should have been taking note of. Let’s learn from Boyle that talent doesn’t just come in the stereotyped package. Sometimes the best talent comes from those you underestimate.
-Karyn
The Scrapbook - Photo 7
Here is the last part. By the way, I have some more to add to the parts that I already completed (a couple of things I just remembered), and I will be editing the entire story. Once I do this, I will put the entire scrapbook story together as a posting(hopefully this week). In the meantime, if you want to see the other parts, here they are - photo 1, photo 2, photo 3, photo 4, photo 5, and photo 6.
The last section of the scrapbook involves my adult life prior to Quinn’s arrival. We see a photo of a wedding day. The photo shows the wide smiles of a newly married couple, but I now know that the smiles would be far wider had we really known the three beautiful children that we would someday have – including the one that we would chose to have despite the scare of a prenatal diagnosis. We see photos of the birth of our two sons, who are blessed to have the beautiful sister that they now have. They will become better men because of her. I now realize that during pregnancy and childbirth I was naïve and took having a healthy baby for granted. Another lesson that I learned from Quinn, for it wasn’t until my third child that I truly realized that having a child is truly a miracle – especially when you have one that has 47 chromosomes. In this section of the scrapbook we see photos of my work with adolescents, some of whom had mild cognitive disabilities or learning disabilities. We can see the passion I have for my career in these photos, but I sometimes missed important things that I now clearly see today – especially the hurtful use of the r-word. There is no more ignoring it for me. In addition, at this time depicted in the scrapbook, I would talk with these young people about what their experiences mean to them, including the experience of having a disability. However, I now know that I was not as fully connected to these discussions as I could have been in my heart and soul, like I am today. For example, recently I spoke with a young man who called himself the r-word and with tears in his eyes, he asked for my opinion of him. This was one of the most significant moments of my career. I felt Quinn’s presence with me and guiding me.
Having Quinn in my life has brought more insight and reflection than I ever imagined. Some people have told me that it is their belief that I was selected to be a mother of a child with special needs given my experiences and personality. I really don’t think this is the case. I am just like everyone else and it was the roll of the dice that Quinn became my daughter. 47 chromosomes just came with the roll. However, I do think there were significant moments in my life that led me to this point and how I would cope once Quinn entered my life. I think everyone has these moments, whether they want to see them or not. If you ask anyone to reflect upon their life after some significant event, I think they could come up with a similar tale as I have. To me, it is truly remarkable how throughout my life Quinn was with me even though I did not know it. She was there, guiding me through good moments and bad. This scrapbook of sorts – even if it is just my memories – really demonstrates my little girl’s presence throughout my life. I love you, Quinn; thank you for going on this journey with me. Thank you for this beautiful scrapbook that you have given me. I will treasure it always. I am honored to be your mommy.
-Karyn
The last section of the scrapbook involves my adult life prior to Quinn’s arrival. We see a photo of a wedding day. The photo shows the wide smiles of a newly married couple, but I now know that the smiles would be far wider had we really known the three beautiful children that we would someday have – including the one that we would chose to have despite the scare of a prenatal diagnosis. We see photos of the birth of our two sons, who are blessed to have the beautiful sister that they now have. They will become better men because of her. I now realize that during pregnancy and childbirth I was naïve and took having a healthy baby for granted. Another lesson that I learned from Quinn, for it wasn’t until my third child that I truly realized that having a child is truly a miracle – especially when you have one that has 47 chromosomes. In this section of the scrapbook we see photos of my work with adolescents, some of whom had mild cognitive disabilities or learning disabilities. We can see the passion I have for my career in these photos, but I sometimes missed important things that I now clearly see today – especially the hurtful use of the r-word. There is no more ignoring it for me. In addition, at this time depicted in the scrapbook, I would talk with these young people about what their experiences mean to them, including the experience of having a disability. However, I now know that I was not as fully connected to these discussions as I could have been in my heart and soul, like I am today. For example, recently I spoke with a young man who called himself the r-word and with tears in his eyes, he asked for my opinion of him. This was one of the most significant moments of my career. I felt Quinn’s presence with me and guiding me.
Having Quinn in my life has brought more insight and reflection than I ever imagined. Some people have told me that it is their belief that I was selected to be a mother of a child with special needs given my experiences and personality. I really don’t think this is the case. I am just like everyone else and it was the roll of the dice that Quinn became my daughter. 47 chromosomes just came with the roll. However, I do think there were significant moments in my life that led me to this point and how I would cope once Quinn entered my life. I think everyone has these moments, whether they want to see them or not. If you ask anyone to reflect upon their life after some significant event, I think they could come up with a similar tale as I have. To me, it is truly remarkable how throughout my life Quinn was with me even though I did not know it. She was there, guiding me through good moments and bad. This scrapbook of sorts – even if it is just my memories – really demonstrates my little girl’s presence throughout my life. I love you, Quinn; thank you for going on this journey with me. Thank you for this beautiful scrapbook that you have given me. I will treasure it always. I am honored to be your mommy.
-Karyn
Tuesday, April 14, 2009
The Weight of Words
Some days I feel just like this clip. You walk along minding your own business and then you are subjected to words that hurt. To be fair, some individuals don't even know they are hurting you. They might not know that you have a daughter who has a cognitive disability. It could be not knowing about your personal situation or that they never thought about the history and connotation of this word and what it personally means to you. Quinn has opened my eyes to this - to be more sensitive in how I say things. In such situations you have to have the energy to say something, to teach, even though you are tired and weighed down by all of this. But I would rather have this any day of the week than the other reason why some people use such hateful words. Unfortunately, you have some people who want to hurt others and just don't care about your feelings. They use this word to purposely hurt you. They delight in it. At times going online can be hurtful because you see this firsthand. When I found this clip on YouTube I even saw some hurtful comments. What does it say about our society that now some people feel so good about being so hateful online? Does this make these people feel better about themselves picking on those who just want to help others and try to get a message out there about respect? Who really has the disability here? Some days you just feel so weighed down by all of this, but you can't give up. You have to keep on. I have Quinn cheering me on.
Monday, April 13, 2009
The Scrapbook - Photo 6
Here is the next part. If you haven't read them - these are the links for photo 1, photo 2, photo 3, photo 4, and photo 5.
Part 6:
Now the scrapbook moves on into my graduate school days. We see photos of me sitting in classrooms learning about intelligence tests, the diagnostic criteria of mental retardation, and other concepts associated with the field of school psychology. Little did I know that these things would someday serve me well in my role as Quinn’s mother. In one of my first classes, we watch the film Educating Peter, about Peter Gwazdauskas, a third grade student who has Down syndrome. The film is about his full inclusion in the classroom. It was an intense film to watch – we see the other children’s reactions to Peter – which were not always positive, Peter’s aggressive behavior towards the other children, but then his ultimate success in the classroom. This film created intense debate in the class as to whether inclusion was appropriate or not. I remember sitting there all quiet and unsure about what I believed. Maybe I knew deep down that it would not be so easy and clear-cut for me. Maybe I knew what would be coming without being able to articulate this into words. I sat there during the discussion uncomfortable, wondering why my professor showed this to us and thinking about the difficulty Peter’s parents faced. Now looking back, I remember that my professor also had a daughter with a disability. Maybe she showed us this film to show us the complexity of the situation – her situation. Maybe give us an opportunity to see the parents’ side too. I missed an opportunity to ask her about her opinion, her experience. I regret this. I look at this section of the scrapbook and wish I could go back and do some things differently. There is another photo that also represents a lost opportunity. My first client was a mother questioning the diagnosis of mental retardation for her daughter, a first grade student. I conducted the assessment by the book – interview, observation, standardized testing, and informal assessment measures. All pointed to the diagnosis being correct. I sat with the mother and explained the results. I saw the pain in her face despite her strong exterior. I felt that I did right diagnostically in the case, but now know that I would have been much more compassionate in my discussion of the results. I would allow her to tell her story. I would allow her to speak more about her feelings. I would talk about strengths and support. I know now am a much better psychologist because I have Quinn in my life, but I regret missing opportunities with past clients. However, at least I learned this lesson now instead at the end of my career or not at all.
Part 6:
Now the scrapbook moves on into my graduate school days. We see photos of me sitting in classrooms learning about intelligence tests, the diagnostic criteria of mental retardation, and other concepts associated with the field of school psychology. Little did I know that these things would someday serve me well in my role as Quinn’s mother. In one of my first classes, we watch the film Educating Peter, about Peter Gwazdauskas, a third grade student who has Down syndrome. The film is about his full inclusion in the classroom. It was an intense film to watch – we see the other children’s reactions to Peter – which were not always positive, Peter’s aggressive behavior towards the other children, but then his ultimate success in the classroom. This film created intense debate in the class as to whether inclusion was appropriate or not. I remember sitting there all quiet and unsure about what I believed. Maybe I knew deep down that it would not be so easy and clear-cut for me. Maybe I knew what would be coming without being able to articulate this into words. I sat there during the discussion uncomfortable, wondering why my professor showed this to us and thinking about the difficulty Peter’s parents faced. Now looking back, I remember that my professor also had a daughter with a disability. Maybe she showed us this film to show us the complexity of the situation – her situation. Maybe give us an opportunity to see the parents’ side too. I missed an opportunity to ask her about her opinion, her experience. I regret this. I look at this section of the scrapbook and wish I could go back and do some things differently. There is another photo that also represents a lost opportunity. My first client was a mother questioning the diagnosis of mental retardation for her daughter, a first grade student. I conducted the assessment by the book – interview, observation, standardized testing, and informal assessment measures. All pointed to the diagnosis being correct. I sat with the mother and explained the results. I saw the pain in her face despite her strong exterior. I felt that I did right diagnostically in the case, but now know that I would have been much more compassionate in my discussion of the results. I would allow her to tell her story. I would allow her to speak more about her feelings. I would talk about strengths and support. I know now am a much better psychologist because I have Quinn in my life, but I regret missing opportunities with past clients. However, at least I learned this lesson now instead at the end of my career or not at all.
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.
Sunday, April 12, 2009
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!
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!
Saturday, April 11, 2009
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
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
Friday, April 10, 2009
Wednesday, April 8, 2009
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.
Tuesday, April 7, 2009
Monday, April 6, 2009
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
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
Sunday, April 5, 2009
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
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
Saturday, April 4, 2009
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
-Karyn
Friday, April 3, 2009
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?
Wednesday, April 1, 2009
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!
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!
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