Yesterday I started to think about something very important. The importance of rests in music. Our pastor helped me get this idea into my head and apply it to Quinn. Rests are the intervals of silence when it comes to music. They are very very important because without them, the song wouldn't be the same. We need rests; we need to recognize them and cherish them, otherwise the song would not be the masterpiece it is. I experience rests with Quinn all the time. These are the intervals of sameness before she acquires some new skill. I need to recognize that these rests are important and cherish them, not trying to rush to the next skill or part of the song.
I haven't posted for a while - It has been crazy busy. I have been thinking about a lot though and just haven't had the time to write it down. Things like - why are there politics even in the world of DS (why can't we just come together)? What is real support? How DS can change some relationships. Stuff like that. Maybe someday there will be posts on those subjects.
Quinn has been doing great. She is more active - not crawling, but getting closer. She is scooting around. She will see a neurologist next month because her head periodically drops. Hard to explain, easier to demonstrate but obviously can't in this format. I am really proud of myself that I am not worrying about that right now. Not much you can do about it now and we just have to wait to see what they say. One day at a time....
I am also proud of how I reacted to a situation over the weekend. We were at a picnic and there was a little girl there who was born a few days before Quinn. She is doing all this stuff - walking, talking, getting herself a drink of water - she was a little spit-fire. Normally there would be this pain in my heart at those time - grieving the loss of my dream of a typical daughter. But this time, I had none of that. I noticed all this little girl could do and found it interesting the difference between Quinn and her, but the pain wasn't there. That was kind of cool. I know the pain may come back some time (it can be like that sometimes, just relapsing out of nowhere), but for now I am celebrating.
I finished teaching my multicultural counseling class. As I mentioned before, I just wanted to comment on disabilities as being an area of diversity, like race, age, sexual orientation, religion, and gender. Expanding on the minority model of disabilities that I mentioned before, here are some thoughts I have on that topic…
There is diversity within the area of disability as well, including in the area of Down syndrome. Quinn has some of the same experiences and different experiences as other children with Down syndrome her age. This also applies to typical children too – she has had some of the same and different experiences to typical children her age. The problem comes in when certain assumptions are made.
Some problematic reactions to those with disabilities range from ignorance to lack of understanding to being overprotective to being overly sympathetic. There are reactions of support and love too. The main issue with the problematic reactions is often not the disability or the person with the disability, but the person who is reacting – their own attitude, bias, and personal fears/baggage related to disability. We must look at ourselves and grow. Especially when we are having a strong reaction! I know this was the case for me. Just read my scrapbook post.
Because society likes to categorize, some individuals may assume that a disability in one area impacts other areas. This can be very frustrating because a person could have a talent in another area. If a person accomplishes something (like Karen Gaffney or Christopher Burke) others may think these accomplishments in certain areas (swimming or acting) are superhuman. They are just individuals with talents, not superhuman. Or there may be the other extreme – individuals with disabilities may be seen as being afflicted or the victim of the disability. Quinn does not suffer and she is not a victim.
There is a need to recognize they are a person first – pay attention to person first language. Quinn is first and foremost Quinn, a person. She is not a DS kid. She is Quinn, an individual, so much more than just DS.
Look at each individual, but also learn about the disability. If you don’t know something, don’t assume – just ask and admit you don’t know. Do not solely focus on the disability. Sometimes the problems isn’t mostly the disability, it is more of the environmental contributions to problems.
There may be two types of errors made: errors of omission and errors of commission. Errors of omission involve failing to ask about certain areas because of assumptions about the disability (e.g., relationships and that they may not have romantic interest). Errors of commission involve bringing up certain issues because of the disability. Personal problems are assumed to be result of disability. Not all experiences are because of the disability – there are individual and universal factors too.
Olkin (1999) talked about three models of disability, each impacting how the disability is perceived. They are...
Moral Model - This focuses on the disability resulting from some sin or moral lapse. The effect - shame.
Medical Model - Disability is a problem in the individual. Action must be taken to cure or rehabilitate. The effect - pathology and treatment.
Minority Model - The environment fails to accommodate the needs of individuals with disabilities. There are negative social attitudes. The problem lies more in society's perception, than in the individual.
Things have a funny way of working out. I never dreamt that I would sit on the other side of IEPs. Being trained as a school psychologist, I always thought I would see them from that cushiony side - the professional side. But Quinn entered my life and the story then changes. In another interesting twist of fate, I am getting a warm-up to my experience as a parent with IEPs. Today we received the paperwork about Aidan's Speech/Language Evaluation. At his Kindergarten screening, the school decided they wanted to follow to see if he should have services. I kind of knew this would be coming along since sometimes people have a difficult time understanding him. Somehow I always know what he is saying though! Who would have thought big brother Aidan would pave the way for his little sister Quinny on educating his parents about the being on the other side of the process. Yes, things have a strange way of working out in my life.
15th Century: The court fool was a part of medieval society. Some jesters were disabled either physically or mentally.
1756: Patients at the Pennsylvania Hospital in Philadelphia were chained to the walls of the basement and put on display for a fee.
1841-1845: Dorothea Dix advocates for separation of disabled incarcerated in penitentiaries. The first asylum was built in New Jersey. She is able to convince several other stages to do the same.
1883: The term “eugenics” is coined by Sir Francis Galton.
1907: Indiana passes the first eugenic sterilization law.
1915: Dr. Harry Haisalden allows a newborn with a disability to die and promotes this as a way to reduce the disabled population.
1927: Buck v. Bell is heard by the Supreme Court. Chief Justice Oliver Wendell Holmes wrote the majority decision that Buck’s sterilization was constitutional because “three generations of imbeciles are enough.”
1941: Rosemary Kennedy is lobotomized and sent to the St. Coletta School in Jefferson, Wisconsin two years later in 1943. She spent 57 years at the school until she passed away at the age of 86.
1953: Medical experiments are conducted on 100 boys at the Fernald School in Waverly, Massachusetts. The boys were subjected to radioactive elements in their food to determine the effects.
1963-1966: Medical researcher Saul Krugman intentionally infected children placed at Willowbrook, either orally or by injection, with hepatitis in order to study what would be the most effective treatment.
1964: Civil Rights Act is passed outlawing discrimination based on race. Framework for disability rights legislation.
1965: Senator Robert F. Kennedy visits Willowbrook State School and labeled the deplorable conditions a “snake pit.”
1972: Geraldo Rivera does an expose on the Willowbrook State School that leads to a federal inquiry.
1973: Passage of the 1973 Rehabilitation Act. The discrimination of those with disabilities is addressed for the first time in Section 504. Qualified persons seeking employment could not be discriminated against based on their disability.
1975: “The Education for All Handicapped Children Act,” public law 94-142, was passed in 1975.
1986: Bernard Carabello founded the Self-Advocacy Association of New York State. He was formally at Willowbrook.
Yesterday I heard the term "normal kids." The gist of what I heard was that it is important for the kids I work with to see what "normal kids" do. Two years ago I wouldn't be phased by that comment. Now I keep going back to it - thinking about it. It is really about the little things that are said that reflect the values existing in our society. What does the word normal really mean? That if you aren't normal that you are broken, defected, and need to be fixed? Plus what is normal is difficult to define. I'm not normal, but according to whose definition? There is a judgment there - an evaluation. And I am drawn to all of this because my own daughter, Quinn, would certainly be considered abnormal by someone. I would certainly be considered abnormal because I choose to have her after having a prenatal diagnosis (80-90% of people in similar situations terminate). So I am not like the "normal" women because I choose to give birth and raise a child with Down syndrome - a child who has enriched my life more than anyone can know. I think about Jonathan Mooney's own story in the book, The Short Bus. He was told by his teachers to be "normal." Please be normal today, Jonathan - that is what they said. Can you imagine hearing over and over again that you are not normal? Jonathan and the other kids in special education also knew they weren't like the "normal" kids in school, having to ride the short bus and enduring that stigma associated with that. In addition, his mother was told that there were certain things she needed to learn, like parenting skills, to make Jonathan more "normal." Again the idea that something must be wrong with you to have a child with a disability. It can't just happen to anyone - there must be a reason. I do think that belief is all over the place. People look for a reason why someone has a child with a disability - out of fear that it could happen to them. Interestingly, Jonathan is now a great success because of his ability to see things differently and outside of the norm. About this pressure to be "normal," Mooney says: "The message you get is that you are broken; you have to change and fix yourself to be OK" (p. 47). But change comes from within - you can't force it on anyone. And it seems like a fair amount of time the "normal" people want the abnormal ones to change more for their own comfort than anything else.
In the Short Bus (Jonathan Mooney), the author notes that Down syndrome has been present throughout human history and has also been reported to exist in our closest primate relatives. Societies vary in how they view individuals with Down syndrome, from acceptance to rejection. In the United States, the average life span of children with Down syndrome was two years in 1968; in 1997 the average life span shot up fifty-years because of medical treatment. In the 1970s doctors often suggested that families institutionalize children with Down syndrome because of misconceptions about their ability to bond, learn, and develop. All of this speaks loudly to our history in the rejection of individuals with cognitive disabilities. Hopefully our society will continue be different in many respects as my Quinn ages.
Mooney provides some history about the term Down syndrome in his book. Down syndrome is named after a British physician, John Langdon Down (1828-1896). Down was appointed Medical Superintendent to the Earlswood Asylum for Idiots in 1958. He was horrified by the conditions he saw there and in other institutions and was driven to improve conditions. Many were surprised that he selected to work in this field, given the social stigma of this population at this time. In addition to working to improve conditions for individuals with cognitive disabilities placed in institutions, he also supported higher education for women. On the negative side, his paper “Observations of the Ethnic Classification of Idiots” theorized that different conditions could be classified by ethnic characteristics, and individuals with Down syndrome became referred to as “Mongoliods” because of some of their physical features. Mooney gives the following account of some of Down’s beliefs: “The title of his breakthrough paper on what would become known as Down syndrome was ‘Mongolian Type of Idiocy.’ His theory can be paraphrased as follows: Mental deficiency in white kids is a form of arrested evolutionary development. Down had all sorts of classification systems based on a hierarchical evolutionary ladder, but the one that made him famous was ‘Mongolism idiocy’” (p. 186). Another concern Mooney had about Down’s work was that his description of individuals with Down syndrome was infantilizing. This is not to say that he didn’t have compassion and caring for those he worked with, but that he saw them as “angels, perpetual children, and as almost impossibly kind” (p. 186). Mooney gives the following effect of this: “While this is better than most descriptions of people with disabilities, there was also a subtle form of dehumanization in this description of people with Down syndrome – it was as if they were in fact a different species” (p. 186). Mooney states that the most significant struggle of individuals with Down syndrome does not involve the extra chromosome, but rather how they are treated and the discrimination they experience. Maybe this relates to fear, for having a child with Down syndrome can happen to anyone, anywhere, and is something that you cannot control at the time of conception.
In his book, Mooney meets a young woman with Down syndrome named Katie Basford. I already had posted a clip from the documentary (which I believe has not been released yet). This clip shows some of Mooney’s visit with Katie, and I am reposting it below so you can meet Katie as well if you haven’t already. During his time with Katie, Mooney is tested. Although he has his own history in special education as a child, being with Katie tests many of Mooney’s beliefs and assumptions. For him, it was all about excelling and proving to others he didn’t belong in special education. With Katie, things are different. It is more about how similar she is to other girls, that she is a human and not some angel figure, and the impact she has on the lives of others. This makes him question many of his own prejudices surrounding what is ability and what is disability. This is what having someone with Down syndrome enter your life can do to you. I know because I have experienced it. Mooney states the following about Katie: “[her family] realized that she had changed, already, every single person in the family. She had made an impact on the ways that all her family members saw their lives and life itself. She changed how they looked at and thought of others. How do we value a life? Count all the fingers and toes. Look at the head and make sure it looks like every other kid’s head. Think about the brain, make sure it will work like everyone else’s. Is the value of a life just the sum of its parts?” (p. 191).
The value of life should not be just placed on how much that person can accomplish. Sometimes an individual accomplish a lot, more than anyone else, through what she teaches people just by existing and being present in their lives. This is what Quinn is doing for me. I am still struggling with this concept though. I go back to feelings of sadness thinking about her future and what she may or may not accomplish. I have to remind myself that this is not important. Jonathan Mooney’s visit with Katie reminds me of some important things – in Katie’s world, just like Quinn’s world, “there is no hierarchy of human worth” (p. 198). Isn’t that the way it should be? In addition, Quinn isn’t the one that needs to be fixed – it is all of us who need to be fixed in our perception of disabilities and diversity (p. 199). And lastly, life is about the relationships, not accomplishments. To illustrate this, I will share this account from Candee, Katie’s mother, in Mooney’s book: “Candee asked Katie what she could do to help her, to support her dreams. Katie responded, ‘You can teach me to dance.’ Candee was at a loss at first. She didn’t get it. ‘Teach you to dance? What good does that do?’ Katie smiled and said, ‘If you teach me to dance, then we can dance together.’ It wasn’t about helping Katie – it was about Katie helping us be connected. ‘I just think it’s a shame that we believe that we are individuals in the world. Someone’s presence can shape all of us,’ Candee said” (p. 200).
Alison Palmer-Smith made this short film about her son Danny's life. I agree with Danny's statement at the end of the film that I am ashamed that so many people won't allow children with Down syndrome to be born. They are missing out on one of the most beautiful gifts you could possibly have.
The last two weeks I have cut out of work early on Friday to spend some time with Neal. Both weeks we have gone out to lunch without the boys and only Quinn (it is much less hectic that way - oh don't get me started on how active those boys of mine are). For some time I have been thinking about how social situations are impacted by having a child with a disability. You have really high moments and really low moments.
On the high moment side - last week a waitress came over our table and said that Quinn was beautiful. She started up a conversation and just slipped it in that she has a niece with Down syndrome. I was struck with how she let us know that she knew in one of the smoothest ways possible. What an awesome woman!!! This was similar to a previous situation when we were sitting outside a store waiting. The boys were running around like they tend to do (remember my comment above), and Neal and I were sitting with Quinn. This man walks past us and then doubles back. He proceeds to say congratulations on your baby girl and how he wants to tell us about his brother who also has Down syndrome. He tells us what his brother has accomplished and how he is blessed for having a brother who happens to have Down syndrome in his life. Then just today a teenage girl who seemed a bit shy told us that Quinn was beautiful. She didn't appear to be the type of person who tends to strike up conversations with strangers. That was just one beautiful moment that she felt she had to tell us that. HAPPY HAPPY DAY! Oh the beautiful moments....
Then there are the other ones... the r-word being used to reference how a pair of shorts looked when trying them on at a store, being asked if Quinn is always so happy because of the Down syndrome - and then this person appearing shocked when I said HECK NO, and the always uncomfortable feeling when a conversation seems to be going well and then takes an unintentional ugly turn.
But for right now, I am living high on the high moments.
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.
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.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.
I am loving mom of three children, two boys and one girl. Riley is age twelve; Aidan is eight; and Quinn is five. I have been married to my husband, Neal, for 14 years.
Down Syndrome Awareness Month Blogging Challenge - I DID IT 2009
Deep Thought by Jack Handy
“If you define cowardice as running away at the first sign of danger, screaming and tripping and begging for mercy, then yes, Mr. Brave man, I guess I'm a coward.”
