On Thursday night I asked Aidan what he learned in preschool that day. With a very serious face, he said, "About butt cracks." OH MY. Who is this guy? Then he said, "No it was about vegatables." This kid makes me laugh so much!
I love you so much. You have changed me in so many ways. Usually it is the parent who wants to influence their child's development, but our journey is the complete opposite. No price can be put on what you have given me in my life. I was introduced to you before I could even see your face. It was difficult at times, but out of that came the best thing possible - unconditional love. And when I finally saw your face, there was no way to describe the feeling. It shook me more than you know and made a difference in my life. I have realized that sometimes difficulty and struggle can bring only greater love. For this I owe you so much. I will always love you. You will be my one and only daughter. There will be no other daughter in my life other than you because no one can come close to you. But I have to admit, I don't always like that little extra chromosome that tags along with us on our journey. However, I recognize that it has given me something something essential in my life - you. Therefore, I will try to learn to accept that chromosome the best I can. I found this song by Carbon Leaf that totally describes our journey. I love you.
love,
Mommy
"Life Less Ordinary" by Carbon Leaf
Live a life less ordinary Live a life extraordinary with me Live a life less sedentary Live a life evolutionary with me Well I hate to be a bother, But it's you and there's no other, I do believe You can call me naive but... I know me very well (at least as far as I can tell) And I know what I need
The night you came into my life Well it took the bones of me, took the bones of me You blew away my storm and strife And shook the bones of me, shook the bones of me By the way, I do know why you stayed away... I will keep tongue-tied next time
Live a life less ordinary Live a life extraordinary with me My face had said too much Before our hands could even touch To greet a 'hello' (So much for going slow...) A little later on that year I told you that I loved you dear What do you know? This you weren't prepared to hear I'm a saddened man, I'm a broken boy I'm a toddler with a complex toy I've fallen apart, since the ambush of your heart
The night you came into my life Well it took the bones of me, took the bones of me You blew away my storm and strife And shook the bones of me, shook the bones of me. By the way, I do know why you stayed away I will keep tongue-tied but...
Honey understand, honey understand I won't make demands Honey understand, honey understand We could walk without a plan. Honey understand (honey), honey understand I won't rest in stone all alone Honey understand, honey understand I'm all ready to go But you already know...
Live a life less ordinary Live a life extraordinary with me. If I could name you in this song Would it make you smile and sing along? This is the goal: to get into your soul If I could make you dance for joy Could that be the second-chance decoy? The bird-in-hand I would need To help you understand?
The night you came into my life well it took the bones of me, took the bones of me You blew away my storm and strife And shook the bones of me, shook the bones of me By the way, I do know why you stayed away I will keep tongue-tied next time
Over the weekend Riley discovered the Boxcar Children series and he is obsessed! I remember loving those books when I was his age. It is so cool seeing your kid become interested in the same type of things you used to find so much joy in as a kid. I hope Quinn and Aidan love them just as much as Riley and I do! Now I will have to buy more books from the series!
When times seem too hard to bear & I l feel like giving up I vision your beautiful face, the twinkle of your eyes and things of such The bond we created from my womb to the day you were born Is a mother and daughter bind that can never be torn With the strength and guidance of God and the blessings he pours down from above I want to be the best mom I can be to you and embrace you with all my love You are as precious as a flower and as gorgeous as a rose You have been specially made to the very tip of your nose You are as sweet as honey; such an innocent young child You are brighter than any star in the sky every time you smile I want you to be proud of who you are and strive to be the best Put forth your efforts to achieve your goals and let God do the rest I will always be your mother first, but I'm also your friend Your are the most precious gift, that I've ever been given
Unconditional love means loving someone no matter what may be his/her actions and beliefs. It is something that is talked about in psychology, literature, movies, and music. We can love the person no matter what, but not always his/her actions. The theoretical approach person-centered therapy in psychology is built upon this idea. It purports that every person needs unconditional positive regard to develop. This allows the individual to develop to his/her potential. If love is conditional, problems ensue. It is through the therapist’s unconditional positive regard for his/her client that the client may be able to work through some past difficulties. I think unconditional love isn’t just about love someone despite his/her choices – it is also about fully loving who he/she is even when a disability is present. Our love should not be conditional on certain things – for instance, that our child is free of a disability. It is not like I should be able to toss my child aside because she doesn’t live up to the image set in my mind. It is easy to go around talking about the concept of unconditional love when you haven’t been tested. It is when you are tested that you truly know what you are talking about. With my boys I felt I understood this concept, but it wasn’t until Quinn that I TRULY felt it. Yes, I have been tested. Some days I perform better on this than others. Today is an A+ day! This weekend I have been thinking a lot about this, and for some reason, Billy Joel’s song Just the Way You Are stands out in my mind. Here are some of the lyrics that illustrate this concept of unconditional love:
Don't go changing, to try and please me, You never let me down before, Don't imagine, you're too familiar, And I don't see you anymore.
I would not leave you, in times of trouble, We never could have come this far, I took the good times, I'll take the bad times, I'll take you just the way you are.
Don't go trying, some new fashion, Don't change the colour of your hair, You always have my, unspoken passion, Although I might not seem to care.
I don't want clever, conversation, I never want to work that hard, I just want someone, that I can talk to, I want you just the way you are.
I need to know that you will always be The same old someone that I knew, What will it take till you believe in me, The way that I believe in you?
I said I love you, and that's forever, And this I promise from the heart, I couldn't love you, any better, I love you just the way you are.
I don't want clever, conversation, I never want to work that hard, I just want someone, that I can talk to, I want you just the way you are.
Quinn, my baby girl – I love you for who you are. Let’s share this song together, you and I.
When you get to the end of your rope, tie a knot and hang on. Franklin D. Roosevelt
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. Christopher Reeve
Life is very interesting... in the end, some of your greatest pains, become your greatest strengths. Drew Barrymore
Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength. Arnold Schwarzenegger
Quinn is the luckiest little girl in the world. She has two brothers, Riley (age 8) and Aidan (age 4), and they rock her world. They are so different from one another, which is why Quinn is so lucky - she can see that there is no one way you have to be. Riley is the caretaker, the caring, loving, and sensitive one. Aidan is the boy's boy - the one who is outgoing, active, and isn't afraid to show how he feels. Step into Quinn's world and see what she sees when it comes to her brothers...
As can be seen in my last post, a person can start getting paranoid as to why people are doing certain things. Here is a funny example from the Carol Burnette Show...
Well it happened…or at least I think it did…I am not sure, maybe I perceived this all wrong, but the important part is that I think it happened…It was bound to happen given the sort of week I was having.
So here it is, yesterday I felt ostracized because I have a child with a disability. I was in the cry room with Quinn at church. When I walk in, there was another person there with his/her child (around the same age as Quinn). I speak to this person about the volume of the sound, adjust it, and then recheck with them that the adjustment was ok. I was friendly, but this person didn’t really say much. He/she minimally talked to me and kept looking at Quinn. Another person comes in with a baby. The first person proceeds to start talking to this new person non-stop. They are discussing their children’s temperaments, developmental milestones, where they live, etc – all while the sermon is going on. The first person initiates all this discussion. I thought to myself, it was like pulling teeth to have him/her talk to me, but now he/she is just chatting away with someone he/she obviously doesn't know. All I can hear in my mind is that “I don’t belong,”” I am on the outside,” “They don’t think I matter“– it isn’t like they want to know anything about Quinn. Just ignore the lady right next you who has the child with a disability. Pretend she doesn’t exist. We don’t want to know or think anything about that. That would be just way to intense for us to even see, think, feel...Mind you, all of this was going on while we should have been listening to the sermon (which I am betting had an entirely different message), but the volume I had set was drowned out by their chatting and the hurt thoughts circling around in my head.
So in this situation, I am already on the outside, what can I do? I decide to go with it – why not emphasize that I am on the outside? I work with Quinn on her signing. Might as well make some use of this time. I can feel eyes on me across the room. So be it.
Remember SNL’s Deep Thoughts by Jack Handy? These were thoughts like:
“If God dwells inside us like some people say, I sure hope He likes enchiladas, because that's what He's getting”
“It takes a big man to cry, but it takes a bigger man to laugh at that man.”
"I believe in making the world safe for our children, but not our children's children, because I don't think children should be having sex."
My college roommate, Wendy, and I loved Deep Thoughts by Jack Handy. We would just crack up when hearing these. Here is a shout-out to Wendy if you are reading this! Anyway, there is a concrete truth to these thoughts. That is why they are so funny. We all have deep thoughts and sometimes they can seem odd or strange to others, like these Jack Handy ones. I started having some deep thoughts of my own after my moment the other night when I wrote my letter to the 21st chromosome. Here are four of my thoughts…
#1 Some things are backward. Like I am really the weak one, and Quinn is really the strong one. She is the one who comforts me. I may have physical and cognitive advantages, but she has more wisdom and power than I ever will. It is all ironic if you think about it. My 18 month daughter also has more strength and character than I, a 37-year-old woman, can ever dream of having. She is the one that is caring for and guiding me, so to speak. I am the one with the disability - she is the one with the ability.
#2 After even earning a doctorate, I have felt the need to "return to school," and I have been tested by this experience. Sometimes I pass these tests, and sometimes I fail. But even when I receive that F on my report card, I still learn more than I ever could have with all A grades.
#3 You can have both a friend and an enemy in something like Down syndrome. That strong hate makes you closer to it because it knows your weaknesses and vulnerabilities. If someone or something sees you at your most vulnerable moment, you undoubtedly feel more connected to it.
#4 And finally, you need humor regularly on this journey. I added this Deep Thoughts by Jack Handy to side of my blog because it is totally true for me on this journey: “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.”
Sometimes it is OK to be weak and a coward. I have learned to be proud of this. Yes, Mr. Brave Man and Ms. Brave Woman, I am a coward.
I am just going to come right out and say it. Sometimes I hate you. Sometimes my heart aches all because of you, especially when I think about all that Quinn can’t do compared to her typical peers. She is so behind in her motor development. She is even behind some of her peers who have Down syndrome. And there is absolutely NOTHING I can do about this. I am helpless and feel ineffective as a mother. I just have to stand by and watch. This is all because of you. I hate you when I think about all the jokes that will be made about my beautiful daughter. I hate you because I know other people talk about “Poor Karyn” who has that child with the disability. I don’t want pity. I don’t want my daughter be the butt of someone’s jokes. I don’t want to see my daughter struggle. I don’t want to have a HUGE question mark in my head when I think of Quinn’s future. Why did this have to happen?
Now I take a deep breath, look at my beautiful daughter who fell asleep in my arms just a moment ago and know the answer to the last question I asked you. Before Quinn, I was on the superficial path in life. You came into my life to teach me very important things. You came to teach me that true love for your child involves loving them no matter what – loving them no matter what others say about them, loving them for both what they can and can’t do, and loving them despite the pain in your heart you sometimes feel. I didn’t get this before. Quite honestly, I don’t think many people get this. Is this why you decided to run through every cell of my daughter’s beautiful little body? You came into my life to give me perspective, to make me care about things I didn’t even see before, to educate me, and to introduce me to a whole other world with such beautiful people in it.
Right now I have a love-hate relationship with you. I just can’t let go of that hate right now, but I know you made my life better in some ways. This is where I am, and it is an acceptable place to be - I am entitled to feel as I do about you. You will just have to accept that I have these feelings about you, for we are going to be together for a long time.
Tonight Riley and Aidan were crushed about the loss of Danny Gokey. There goes Riley's possible connection to the next American Idol (Mrs. Gokey - Danny's sister-in-law - was his Kindergarten teacher afterall). Riley said something interesting at the beginning of the show. Right away he recognized Ben Stiller, who made the unfortunate film Tropic Thunder, which unfortunately pokes fun at individuals with cognitive disabilities. Riley wanted him off of American Idol pronto. He told Aidan, "That is that guy who made a movie that makes fun of people like Quinn. We won't watch anything he does anymore. What he did was wrong." Bravo Riley!
This weekend we went to the indoor waterpark for Mother's Day. It is kind of a tradition for us. Not that I love waterparks (as someone who wears contact lens it is not the best place to be with water splashing in your eyes), but I love seeing the boys have fun - so it is a great place to be in that respect. Quinn and I spent a lot of time together (and we forgot the camera of course)! Once we sat next to the lazy river. I was holding Quinn across my shoulder and I kept seeing these people floating by waving and smiling. I thought maybe they thought Quinn was cute or someone was behind us. Then when we got home last night, Quinn started to show her Miss America wave to me while sitting across the room. Up to this point, she tends to look at her hands a lot (so aggravating to try to break this behavior), but doesn't really use them to communicate other than signing more. She was really waving! I guess this was what she was doing to the people floating on the lazy river. And her clueless mom didn't realize - lol.
My final posting about Jonathan Mooney’s book involves the chapter “How to Curse in Sign Language.” It tells the story of a divorced mother, Deborah, and her decision to adopt a little girl, Ashley. Mooney said the following about Ashley’s needs: “Ashley had been born to an alcoholic, anorexic mother fourteen weeks prematurely. She weighed just over one and a half pounds, and her medical birth records state that she smelled of alcohol when she was delivered. A liver biopsy was performed right after her birth, and it showed that a tumor was present. She also had a ‘brain bleed.’ Even more threatening to Ashley’s health was a rare condition she had called Juvenile Xanthogranulomas, which causes tumors to form all over the body. These tumors, according to Deborah, ‘formed on Ashley’s skin, under her skin, on her eyes and ears, on other vital organs, and on her brain’” (p. 109). In addition to the above, Ashley has a seizure disorder and is blind and deaf, among having other medical difficulties.
However, as often is the case, this is not a sad story about a child with a disability – it is a story about love, acceptance, and ability. When Deborah first set eyes on Ashley she said “I thought she was beautiful. Her left eye, because of glaucoma, was about twice the size of her right eye. And although that skewed the symmetry of her face, she had a smile that lit up the room!” (p. 110). To tell the truth, prior to reading this, I used to think that I was someone who made a difficult, yet noble choice in having Quinn (given the prenatal diagnosis), but now I know that I am not such a person. The person who is noble is Deborah and people like her. She could have chosen any child or just to not adopt at all. She already had a son from her marriage. But she fell in calling in her heart to adopt and she fell in love with Ashley and Ashley alone. Ashley was the one. She saw Ashley for Ashley and did not fall into the trap that many of us do, seeing the disability first and then Ashley. I am ashamed to say that if this experience wasn’t placed upon me through the pregnancy, I would not be where I am today. I would never have read this book. I would never have looked at individuals with Down syndrome like I do today. I just adapted to what was given to me. It is people like Deborah who with love and faith make a true choice to bring a child with special needs. They are the heros and the noble ones. They are the ones with true love and faith in their hearts. In Mooney’s chapter, Deborah had many other salient things to say – like how the rejection is ten times worse than any of Ashley’s medical issues, that with love you can see beauty and ability, that we need to get beyond a view of fixing those who are not like others, and how having a sibling with a disability can enrich a child’s life.
If you are interested in this topic, check this inspiring story out. This is a family who experienced the same calling as Deborah.
In addition, please visit Reese’s Rainbow here, where there are many beautiful children with Down syndrome who need homes. They are now in countries around the world. These particular countries do not value individuals with Down syndrome and these children will be placed in a mental institution if not adopted. Almost every day I go and see Lera’s beautiful face here. I see she is on hold now – and I hope that is because she found a forever family. She deserves this just like Ashley does. You can also follow one family’s journey in adopting here. God bless all these beautiful people - Deborah, Ashley, and all these familiies and little ones who are or have experienced adoption.
I have been posting off and on about Jonathan Mooney’s book “The Short Bus.” I probably have two postings (this and another one) left in me. It really was a very interesting book.
There are certain symbols that exist in our society that have certain connotations. Almost everyone recognizes these things, like the short school bus and the features of Down syndrome. They convey certain emotions. Jokes are even made about these things, like both the short bus and r-word jokes. This brings pain to some, including me. Mooney decided to drive around the US in a short bus hearing individuals’ stories because it was such a symbol. It was an important part of the experience – encountering the difficulties of the short bus again. He was yelled at during the journey – people yelled out the “r-word” because of how slow he could drive in it. He witnessed fear during the journey – a young man with Down syndrome saw Mooney’s short bus and was fearful that Mooney was going to take him away in it. While on the journey, he thought of all the ways he would destroy or abandon the short bus on the end of the journey – demonstrating his power over this representation of all the difficulties he faced during his placement in special education. All the pain, all the jokes, all the hurt. All the social stigma. But in the end, Mooney decides he can’t destroy or abandon the short bus. It started to represent all the beautiful people he met and the great experiences he had on this journey. It no longer represented pain and hurt; it represented love and acceptance amongst this group of people he met and for himself. It became a part of him.
Isn’t this what Down syndrome can be like too? At first, it is so difficult to recognize the eyebrows that touch in the middle, the crease across the hand, the flat feet, etc. You want to do away with it, and have just your child there. You experience things like hurtful words from others and feelings of fear. You hope people don’t recognize the Down syndrome, kind of like you hope no one sees you exiting the short bus. Comments like, "she doesn’t look like she has Down syndrome," can actually make you happy. You want the Down syndrome, but not your child, to go away like Mooney’s short bus. Somewhere on this journey things change. You begin to see the true beauty of it all. You look and look at that beautiful face and see the beauty in the eyebrows. And then you meet truly beautiful people you would never have known before. These are the best people you ever met in your life – they are caring, loving, accepting, and they don’t take things for granted like others you know. Then you learn so much about yourself. You are becoming more sensitive to differences, you are thinking of things in a whole different way, and you love more than you ever imagined you would love. You come to cherish what you were given. Like Mooney’s short bus, you begin to see that this is something that you can’t do without.
When you learn that your child has Down syndrome, you hear a whole laundry list of possible medical difficulties you may face. We have so far been blessed - but I tend to have the feeling that somewhere somehow this won't last - there will be something someday that we will face. Boy do I hope I am wrong.
Anyway, one of those potential difficulties is Alzheimer's disease. Individuals with Down syndrome have a higher prevalence (3-5 times greater than the general population) and the symptomology often begins earlier. This is one of the things that I tend to want to just not think about. Denial is my friend when it comes to this.
But tonight I found out that there will be a new series on HBO beginning Sunday, May 10. There is some new research out there and this program may give some hope and awareness to something that we, the Down syndrome community, may face someday. This may help us, for we have a higher stake than anyone in this. Check it out here and watch the clip below.
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.
I debated on posting this one. You may know that I am interested in learning about disability history and also hearing music that relates to Down syndrome. Music can really help express emotions and experiences and help us cope and heal. Having a child with a disability can be a journey consisting of many different emotions, so I am drawn to songs about parenting a child who happens to have special needs. Usually I look for happy songs or songs about the meaning behind having such a child. I came across Phil Coulter’s song, Scorn Not His Simplicity. Coulter’s first born son had Down syndrome. A few months after his birth, Coulter wrote this song. I did find something on the internet that said that his son died at the age of three, although I am not sure how accurate that is. Luke Kelly intially performed the song, but I have attached a clip of Sinead O’Connor (I loved her music growing up afterall). You can find Luke Kelly recordings on YouTube.
I don’t like all of the lyrics (like the ones about emptiness and despair), but I am still drawn to the song because it says a lot of things to me - it speaks honestly about guilt, fears, and helplessness. Sometimes we have to go with our feelings in these areas too and express them - it is only natural (especially when your child is little). It talks about the early raw emotion in finding out about your child’s disability - it isn't sugar coated. We do have fears and rough times and that is ok. I have to remind myself of this, and that is what this song does for me. In addition, it also says a lot about how parents are impacted by how society views their child. I hope that everyone looks at Quinn as the beautiful child that she is and will be, but I know that there will be some who will not view her this way. This song speaks to those fears.
See the child With the golden hair Yet eyes that show the emptiness inside Do you know Can we understand just how he feels Or have we really tried
See him now As he stands alone And watches children play a children's game Simple child He looks almost like the others Yet they know he's not the same
Scorn not his simplicity But rather try to love him all the more Scorn not his simplicity Oh no Oh no
See him stare Not recognizing the kind face That only yesterday he loved The loving face Of a mother who can't understand what she's been guilty of
How she cried tears of happiness The day the doctor told her it's a boy Now she cries tears of helplessness And thinks of all the things he can't enjoy
Scorn not his simplicity But rather try to love him all the more Scorn not his simplicity Oh no Oh no
Only he knows how to face the future hopefully Surrounded by despair He won't ask for your pity or your sympathy But surely you should care
Scorn not his simplicity But rather try to love him all the more Scorn not his simplicity Oh no Oh no Oh no
Today I just couldn't get enough of looking at Quinn. I just kept thinking about how beautiful and perfect she is. I call her "little one me" which is totally true - she is the best parts of me. I also thought about my previous posting about Katie's Book of Life. Quinn's purpose is to bring us all together and teach us what is really important in life. She has already succeeded more in life than I ever hope to. Thanks, baby girl. What a happy day today!!!
Riley, Aidan and I LOVE LOVE American Idol. At this time it is the biggest show on television in our house - other than the boys' obsession with Phinnaeus and Ferb. This year is especially exiting for us, as Riley's previous Kindergarten teacher, Mrs. Gokey, is Danny Gokey's sister-in-law. We are are practically celebrities ourselves just because of this connection! Can you guess who the boys are hoping will win? I, however, am all about Adam!
Last week was especially exciting because Jamie Foxx was the mentor to the Idol contestants. During the show, I told Riley how Jamie Foxx's sister has Down syndrome. She lives with him, he talked about her during his Oscar acceptance speech for Ray, and his sister is in one of his latest videos. Check it out here. The best part is the end where he points to her and mouths "That's my sister!" Riley didn't watch the video - the nightclub setting after all - but he found all this very very interesting. You should have seen the smile on Riley's face when I told him about this!
I hope someday my boys love their sister as much as Jamie Foxx loves his. Who knows, maybe Quinn will be in their rock band videos. She will be a cutie with style after all!
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.
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.”
