Tuesday, March 31, 2009

Blessed

Today I advocated on behalf of my daughter. I could not stand by, do nothing, and let March 31 go by without at least trying to have some impact. Quinn is depending upon me. Quinn is depending upon all of us. I think I was successful in getting some individuals to think about what the r-word means and how it can hurt people. People listened. They shared experiences. At one point of the day, someone told me that Quinn was blessed. He/she said that Quinn was blessed because she has me, her father, and her brothers. If you knew this person, you would know what a huge beautiful compliment this was. I could tell it was sincere. I was moved and touched. I told this person thank you, but it is really I who am blessed. Quinn is exactly what I needed in my life. I am astounded at how I was going along in my life without a clue of what I was missing. I want to make this perfectly clear – I am not a special parent or a person with special abilities in parenting a child with special needs. I still struggle. I still get sad. This will continue. But, overall, I have been moved by this little girl’s impact in my life. I hope everyone is blessed in some way by having someone who has Down syndrome or another disability in their lives. It could be a friend, family member, Godchild, acquaintance, anyone – don’t just live your life without really looking at these wonderful people and the unconditional love they possess. We can learn many lessons about ourselves, others, and the world around us through these experiences. Without Quinn I would have never have done what I did today. She has inspired me to make a difference in this world. Thank you my darling Quinn. I am blessed to be your mommy.

-Karyn

Wonder by Natalie Merchant

On Natalie Merchant’s 1995 Tigerlily album is a song entitled, Wonder. Some have connected this song to Down syndrome, although my research on the subject hasn’t uncovered any specific connection between Merchant and Down syndrome (if you have found something that differs from this, please let me know). The reason, however, that this connection has been made is because the music video includes a young woman with Down syndrome along with other diverse women.

The song mentions the term gifted, and as someone who used to work with gifted children, I think that Merchant is not necessarily using the term to describe those with high IQs, but to describe the way unique women can have impact upon others. She uses a variety of women in her video to demonstrate the gifts of different women from different races, generations, backgrounds, and ability. We all have something to offer the world, especially individuals with Down syndrome. We should also think positively about our future and what we have to offer the world. I am touched by this song when it comes to Quinn. I really love the chorus and how at one point in the video Merchant speaks directly to the young woman with Down syndrome. I have also included another YouTube clip below which has a moving performance of Merchant singing the song while playing the piano. I always loved hearing Wonder, it inspires me personally as an individual, a mother, and a woman. Let’s all think about the wonder we have to offer the world.

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

Monday, March 30, 2009

March 31 is Here At Last!



Tuesday, March 31 is here!! Sometime during this day please remember the end the r-word campaign. Tell someone about this campaign and how the r-word can hurt. I have included a number of clips with this posting. There are just so many awesome public service announcements out there – it is just so difficult to select just one. If you don’t watch all of them, please be sure to at least watch the last one if you haven’t already seen it. It is from a documentary called Offense Taken. Note to self: oh great now another documentary that I have to find (oh I love documentaries)! I stumbled upon this trailer on youtube tonight and found this documentary so interesting. It is about a community’s efforts to combat use of the r-word by raising awareness of how it hurts those who know individuals with cognitive disabilities. The most important thing about March 31st is don’t just remember the end the r-word campaign on this day – please remember it every day! Thanks!











The Scrapbook - Photo 3

My story continues...if you haven't read part 1 and part 2, click to get connected to those entries.


Part 3:

The next photo in the scrapbook comes from my awkward middle school days. In this photo we see me as a young girl feeling unsure about my appearance. I look around the crowd and see other students, 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 encountering in trying to feel comfortable with themselves and their bodies at this difficult time. 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 hanging out together with no one from regular education talking to them. 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, unfortunately including me. 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 another thing that I regret – I had that horrible stereotype myself; it won’t be until almost another 25 years that I let some of it go. And unfortunately, I still struggle with it to some extent. 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. 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 counter those stereotypes so Quinn has the best chance she can during those awkward years.


-Karyn

Sunday, March 29, 2009

Road Map to Holland by Jennifer Graf Groneberg

For those of you who are not familiar with this book, Road Map to Holland by Jennifer Graf Groneberg is an excellent book that gives one mother's experience of having a child with Down syndrome. I read the book awhile back, but recently picked it up again to thumb through some sections that I felt drawn to. I would like to share two of them with you.

The first one talks about Emily Perl Kingsley's essay Welcome to Holland (something I shared before). This essay was part of the inspiration for Groneberg's book, although Groneberg wanted more information on what to expect in the experience, hence the title of the book. In addition to writing her essay, Kingsley was a writer for Sesame Street. She became an advocate for people with disabilities after the birth of her son, Jason. This advocacy included having individuals with disabilities on the cast of Sesame Street. If you watched this show when you were a child (or now with some little one you know), you totally can see Kingsley's influence. I am drawn to this quote because of my reflection on my memories from the past involving experiences with individuals with disabilities. This excerpt is from page 220 of Groneberg's book. It follows after Groneberg realizes that a Sesame Street video she has seen many times has a child in it, named Michael, who has Down syndrome. She then does some research on Emily Perl Kingsley. The excerpt is as follows:

"A vivid childhood memory comes to me. I'm four years old. The bright morning sun shines through the windows behind the television. I can see dust motes in the shafts of light; to me, they look like sparkles. The brightness makes the television screen seem dark. I have to concentrate to see the images. I'm so filled with happiness I can barely contain myself; it's my favorite shoe. There's Ernie and Bert, Big Bird and Grover. But the best is the Count. I love to count with the Count.

I've grown up with this show; these images of people all ages and colors and abilities living and working and playing together. It's possible that I simply didn't need to remember that Michael had Down syndrome, until now. My mind, and heart, is used to the idea of acceptance and inclusion. For this, in part, I have Emily Perl Kingsley to thank.

Once again, she's given me hope. I feel a great sense of relief. It's as if my previous indiscretions - not thinking about the mother or the family of the man at the secondhand store; not knowing what to say to the man gathering shopping carts in the grocery store parking lot - now have a counterpoint. At least there's this; I watched a Sesame Street video hundreds of times without focusing on the child with Down syndrome. Before I even knew it mattered, I accepted him without a second thought. If it happened to me, maybe it's happened to other people, too."

I can really relate to Groneberg. I had totally forgotten about the experience of watching Sesame Street and it's impact on my early development until I read Groneberg's account of this for herself. Thanks for including this in your book.

The second passage is on page 237. While at a picnic, Groneberg reflects on how her experience at this event would have differed without her twin sons, one of which has Down syndrome. She would have had just one child then, named Carter, and never would have had this experience with Down syndrome and the clarity it can bring. I think about that a lot too. She also talks about the 90% of individuals who decide to terminate when they receive a prenatal diagnosis of Down syndrome. As a person in the 10% group, I think about this a lot - I did have a choice, and I am so happy that I choose Quinn. I feel honored that Groneberg mentions people like me in her book. The excerpt is as follows:

"For a brief moment, I wonder who I might have been, if Carter was my only child. I probably would be worrying about the food, or my clothes. I'd be thinking small thoughts, little unimportant ones, and I'd miss the big picture. I feel it anew, in every cell of my body: the voices, the laughter. I see it: the beauty of the faces of the children holding sparklers. Fathers and mothers bent over them from behind, supporting them, guiding them. Everyone lustrous and shining.

I think again on the nine-out-of-ten statistic, only this time, I also think about the women who might choose a child like Avery. I see them all around me: these are the women I pin my hopes on. These are mothers of our future, if the future is to include children like Avery."

Down syndrome has added so much to my life. I would never have read Groneberg's book if it wasn't in my life. I would never have had this blog. I would never have learned as much as I have. Once again, I owe all of this to my Quinn.

If you haven't seen the clip below, please do - it is of Groneberg reading another excerpt from her book. Groneberg gives me hope. I really appreciate her book. You can also go to her blog too, called Pinwheels. It is in the blogs that I follow.



-Karyn

Saturday, March 28, 2009

Extreme Blog & Quinn Makeovers!


As you can see, my blog received a beautiful makeover done by Lu from the Poppies’ Blog and Poppies Blooming. This is what I love about Down syndrome! I meet a beautiful woman from the U.K. through an online support group that I go on, downsyn.com, and she just offers to help me makeover this blog. What a great heart and immense talent Lu has! Thank you so much, Lu! Down syndrome has enriched my life in so many ways – I have met such wonderful people because of it and am so grateful to have you all in my life.

While Lu was making over my blog, Quinny was getting her first makeover herself. Today was her first haircut! We are growing her hair long, but she did get it trimmed, received some "whispy” bangs, and had it styled by her wonderful hair stylist Mr. Tim (Aidan’s hair stylist too). Above are some photos of my beauty queen. While we were there getting Quinn and Aidan’s haircuts, we saw another couple who were just looking and looking and smiling at Quinn. Their little guy looked like he had Down syndrome too. We never mentioned the Down syndrome, but instead felt a connection and smiled and commented back and forth to each other.

Down syndrome connects people all over the world!
-Karyn

Thursday, March 26, 2009

The Scrapbook - Photo 2

Here is the next part of the story. If you haven't read the beginning, it starts here.

Part 2:

Turning the page of the scrapbook and continuing on towards the arrival of Quinn, 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 watching this woman and these youth. I feel uncomfortable, yet intrigued. Did I know deep down that someday this would be my fate? 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.

-Karyn

Wednesday, March 25, 2009

The Scrapbook - Photo 1

This is a story I have been thinking about doing for a long time. It keeps running through my head when I am walking somewhere or driving in the car - figures, at times when I am nowhere near a computer. And on top of that, when I am actually at the computer I never seem to have the time to write this all down at once, so I am going to do this one in installments. It will help me make sure I actually get this story down - no longer floating around in my head, plus I will have multiple blog entries. Two purposes fulfilled all at once - ha ha.

Part 1:

I look back on my life and feel there are snapshots of moments that appear to predict the entry of Quinn into my life. It is like looking at a scrapbook and seeing events captured in isolated photos that appear to lead up to some ultimate life altering experience, like school photos leading to graduation, dating photos leading to a marriage, or pregnancy photos leading to the birth of a child. In reality there was no way to accurately predict that I would have a child with Down syndrome and it is only that these events are of coincidence, but I still nonetheless feel drawn to reflect on these moments in time.

Two events stand out even prior to my birth. When I was inside my mother, there were three potential generations all together in one - my mother, me, and Quinn. In that egg that would ultimately become Quinn 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 on our family. Quinn was there with me way back when I entered this world; she just waited until 2007 to make her grand entrance.

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 with me. She was no longer in her 20s at the time of the pregnancy. It was a difficult time for her given some intense social relationships because of a person who said some hurtful things about her and the baby. This person was talking about my mother having a child at such an "old" age (note: I was 35 when Quinn was born) and stated that my mother's child would probably be "the r-word." My mother told me that she always thought this person said this because of jealousy over my mother being pregnant, for this individual wanted another child. My mother's purpose in telling me this story was to demonstrate the character of this individual and 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 that way, and I don't blame her. I probably would have felt the same. I was her only child that graduated from 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 now I am the one fighting against that same word because of my daughter.

-Karyn

Monday, March 23, 2009

Happy Tears

I was familiar with Karen Gaffney before, but today I was compelled to see her story again. It was just one of those days that I wanted to feel some hope. Rather, I should say that I NEEDED to feel some hope. Quinn was giggling to herself today and I so loved seeing her do this - it melted my heart. I was just thinking about how beautiful she is, and then it got me thinking about her future (drat I hate those fears that come in at the most inappropriate moment). I just was drawn to Karen's story. I needed to see the positive today. Karen gave me that.

I unfortunately missed seeing Karen in person recently; she came to our area for a number of presentations. I hope one day I do have the honor of meeting her. I cried such happy tears watching these clips. Hopefully someday Quinn will bring other parents a similar hope that I feel from Karen's story. God bless you, Karen. You don't have any idea how much you helped me today.



Sunday, March 22, 2009

Reflection on the R-Word


There are three reasons why I don’t like the r-word. First, it is a deviation from the official diagnostic terms in professional arenas. The official terms tend to be cognitive disability, intellectual disability, developmental disability, or in the American Psychiatric Association’s Diagnostic and Statistical Manual-Fourth Edition Text Revision (DSM-IV-TR), mental retardation. The r-word is not the appropriate term even for the DSM-IV-TR, since that would be MR. The r-word just isn’t the correct term to use.

Secondly, the r-word for me is rooted in a very disturbing and hurtful history. I have already talked previously about this in earlier posts. In the 1950s mainstream society viewed individuals with cognitive disabilities as individuals who should not be a part of society, perhaps a sign of something that was deficient with the parents. There were some very strong families out there who did not do this, but there was a strong influence to institutionalize children with cognitive disabilities. If you watch many documentaries on this subject, the use of the r-word is prevalent. If one observes the look on the individual’s face as he/she is using this term, it often can say a lot about attitudes and comfort level about being around those with a cognitive disability. It was this attitude that allowed the mistreatment of individuals institutionalized at Willowbrook State School in New York. This included purposefully giving individuals hepatitis in order to experiment with treatment methods, not giving them clothing, feeding them in less than five minutes, and allowing them to sit hours and hours with no stimulation. As in classical conditioning, I believe that the r-word has been paired with all these negative images and feelings so much that just the use of the word brings forth all of these negative feelings and connotations.

Lastly, today the r-word is used as a joke, slang, and a put down and still reflects our society’s overall value placed on those with a cognitive disability. The term again attempts to dehumanize those with a cognitive disability, but all in the name of lighthearted fun. We are told to get over it, it is only a word – oh it is just a joke. I suppose I could try to get over it and lighten up, but I don’t think I ever will because this is my daughter they are talking about. How would you like your daughter to be the butt of someone’s joke? This is a more subtle form of discrimination that other minority groups have felt too. I personally think that if it is clear that certain terminology is not appropriate to use in portraying other minority groups, then this same reasoning should apply to the r-word and its use with those with cognitive disabilities. Just a reminder, don’t forget about March 31st!

-Karyn

The Last Ones by Matthew West

Matthew West’s album History includes a song called The Last Ones. West met a young girl named Taylor, who happens to have Down syndrome, when he was performing in Kansas City. Taylor’s father was assisting at West’s concert, so she was present during his rehearsals and sound checks. In various interviews, West admits that when he first met Taylor he felt sorry for her. Unfortunately I remember that feeling before I had Quinn in my life. I am ashamed to admit that now, but yes I was once like that. I appreciate that Quinn became part of my life to help me. Going back to West, the more West came to know Taylor, he began to see that God has a real purpose for her life and began to personally experience the impact she can have upon others. The Last One became a part of his album History because the concept of the album was that history makers come in all shapes and sizes, including those like Taylor with Down syndrome. Let’s also celebrate Quinn’s place in history and the impact she has on others, starting with her mommy.

Here are the lyrics to West’s song:

My friend Taylor she's an angel
Ten years old and beautiful
She's a living, breathing miracle
And she proves it everyday '
Cause the odds were stacked against her from the day that she arrived here
And the doctors told her mom and dad she'd always be that way
And I confess when I first met her I was thinking life's not fair
But then she wrapped her arms around my neck And it all became so clear

God bless the last ones

One day Taylor sent me a picture from her Special Olympics race
And I could tell just by the looks of it she was coming in last place
But she crossed that finish line with a smile upon her face as if to say

God bless the last ones

Maybe the last ones are the lucky ones
The ones who got this whole thing figured out
'Cause when they go looking for something beautiful
They start looking from the inside out

On our way into the restaurant we passed a homeless man
He was half drunk and half asleep with a paper cup in his hand
And I confess when I first saw him I was thinking life's not fair
But then Taylor reached out and wrapped her arms around his neck
And it all became so clear

God bless the last ones

I wish we could all be the lucky ones
The ones who've got this whole thing figured out
Maybe the next time we go looking for beautiful we'll try looking from the inside out

God bless the last ones

The song is a really beautiful one, and I am so happy I stumbled upon it. It made me think that given the recent comments made by the President and how society in general portrays those with disabilities and in the Special Olympics, maybe we should really contemplate the meaning of what West is saying to us here. I do think there is great wisdom in individuals with Down syndrome in how they love and care for others. We all could learn a thing or two from having Down syndrome in our lives. Thanks for reading,

-Karyn

Life is Grand



I actually won an award from Renee at My Life With My Special K's!

I guess this means that people are actually reading my blog – ha ha.

Anyway, thank you very much Renee! I really appreciate it!

The award is called the Life is Grand Award. And for this award I must give five reasons why I think life is grand and then tag five more people. My reasons life is grand are:

1. My kids, Riley, Aidan and Quinn – the smile they put on my face and love in my heart!
2. My husband who helps out so much by taking such great care of our kids and our home. Thanks, Neal.
3. Learning so much because DS entered my life.
4. My friends and family and the great support they bring to my life.
5. My career – the wonderful people I get to meet and learn from.

I also would like to award all of the following. Thank you for your blogs. You have no idea how much comfort and support they bring me! It is also because of you that life is grand!

1. Mutterings and Musings
2. The Zoromski Chronicles
3. Believing in Miracles
4. ReJenerationS
5. My Holland, My Italy

-Karyn

Saturday, March 21, 2009

Brittany's Song by Jonathan White

Happy World Down Syndrome Day!

It was a Labor Day to remember when she came into this world
it was the day we had waited for so long.
Then the Doctor came and said to us with worry on his brow,
we’ll have to take her down the hall with us for now.

The word came back the very next day, your girl will be just fine,
but she will have some special needs unlike yours and mine,
but she will give you lots of love the kind that’s seldom seen,
and now I know she’s the child of my dreams.

She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

Now she’s growing up oh so fast I can scarce believe my eyes,
it seems like only yesterday when I’d hear her cry,
now I know the day will come when she’ll go away,
till then she’s down right beautiful to stay.

She’s down right beautiful, she’s my little girl,
she’s down right beautiful, and she fills my world,
with lots of love, lots of smiles, and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

She fills my world with lots of smiles and she’s happy can’t you see.
Yeah she’s down right beautiful to me.

Friday, March 20, 2009

21 Things for World Down Syndrome Day


Given that it is World Down Syndrome Day, I would like to share 21 things that I have learned because of Down syndrome. I hope you join me in spending some time today also reflecting upon about what you have learned.

1. My life was made better by having Down syndrome in it. I have grown so much as a person and have met such beautiful people because of it.
2. My family’s life is better because of Down syndrome. My boys are more sensitive and caring. My husband has become such a loving primary caregiver to Quinn. She is Daddy’s Little Girl. It is really beautiful to be able to observe this.
3. Language can be hurtful. The r-word is used entirely too much. I never noticed it before. I was truly ignorant about how often it is used and how hurtful it is. Please stop the use of this word. Say something when someone uses it. Person-first language is also so important. My daughter has Down syndrome, but she isn’t Down syndrome. In addition, the term Downs in front of the individual (like with Downs baby) is not preferred (at least by me).
4. Sometimes something that you thought would cause you so much pain is actually the thing that makes you stronger.
5. My daughter with 47 chromosomes will be more loving and appreciative of others than some people with 46 chromosomes. Who really has the disability here? I really don’t have any patience anymore with mean, typical (meaning 46 chromosome) people. I am becoming more and more assertive because of this.
6. You learn a lot about the character of those in your life when you go through something like this. There are some people who have been so supportive, and I am blessed to have these people in my life. Unfortunately this isn’t the case with everyone, but you can’t dwell on that. At least you get some clarity in your life because of Down syndrome.
7. Low muscle tone isn’t entirely a bad thing. It means that Quinny just melts right into you when you hold her.
8. There are some truly remarkable people who happen to have Down syndrome. For instance, Karen Gaffney swam across Lake Tahoe. Christopher Burke is a famous actor and musician. In fact, quite a few people with Down syndrome have musical ability. Riley may have another member in his rock band. As authors Jason Kingsley and Michael Levitz (who also have Down syndrome) demonstrate in their book, don’t count people with Down syndrome out!
9. Babies with Down syndrome are so darn cute! I certainly can’t resist them. Riley agrees.
10. It has been estimated that something like 90% of those who receive a prenatal diagnosis of Down syndrome terminate their pregnancies. It is hard to believe that I am in the minority here. Although I am not pro-life, this still hurts. The idea that a wanted, planned baby would be terminated for nothing more than not being “perfect” is a sad reflection on the values in today’s society.
11. Some countries treat those with Down syndrome like we did in the USA years and years ago. They are given up and placed in orphanages and institutions. This is truly sad considering my point with Number 8. Like some talented people who end up in prison, there are some talented people who end up in mental institutions because of Down syndrome. Only with the Down syndrome side of things, this is because of an extra chromosome, not by any bad choice that they made or because others felt they deserved it through their behavior.
12. Although Down syndrome was named after Langdon Down, it was actually Jerome Lejeune who identified the true cause, that is, three chromosomes being present on what should be the 21st pair.
13. Down syndrome is a syndrome – that means that everyone with Down syndrome does not have the same functioning and/or presenting problems. For example, it is possible to have Down syndrome and not have a heart defect. It is a syndrome, so there are a set of areas that can be affected and which areas vary depending upon the individual.
14. A person who has a child with Down syndrome starts to get excited when they see someone else with Down syndrome. It is a bond like no other. We gravitate towards other families with children with Down syndrome.
15. You come up with strange ways to cope. Sometimes when Neal and I feel down because Quinn isn’t progressing as fast as other kids her age we start out a conversation with “You want to be depressed…” It is just a weird little way that we show our bond on this journey. It isn’t bad to become depressed every now and again. It is only natural. It is nice having Neal along with me on this journey.
16. Quinn likely has Down syndrome because of my egg having an extra 21st chromosome. It was either that or because of Neal’s sperm, but it is more likely because of my egg. Think about that, it just happened by chance. It was by complete chance that this little girl would come into our lives and impact us so much. Isn’t that awesome when you really think about it? Sometimes things have a funny way of working out.
17. Having a child with developmental disabilities isn’t necessarily a bad thing. Your baby is a baby for a longer period of time. Since Quinn may be the last baby I have, that way I get to keep that feeling of having a baby for a longer period of time.
18. Down syndrome, because of identifiable physical features, is the face of cognitive disabilities. Unfortunately this creates some problems in the assumptions others make about people with Down syndrome just based upon their appearance. I am learning what discrimination truly is. As a Caucasian American, I was pretty naive about discrimination before having Quinn, but now I have a better understanding about the more hateful aspects of our society. When you have a child with a disability, you see both the extreme good and the extreme bad in the world.
19. Blogs are actually fun. I would never have started to blog if I did not have Quinn. I joined an online support group in which a lot of members had blogs. I became intrigued and started to explore them. Then I started thinking maybe I could create a blog for my family and friends, my past students, others on this journey, and anyone else who is interested in learning a bit more about what it is like for families who have a child with Down syndrome. This has been pretty fun and therapeutic all at the same time.
20. I have learned so much from Soren Palumbo, Emily Perl Kingsley, Jennifer Graf Groneberg, Kathryn Lynard Soper, and all the authors of the essays in the book Gifts. Because of Down syndrome I continue to learn on a daily basis and am receiving one of the best educations possible.
21. I really understand the concept of unconditional love. It is one thing to study it in psychology class. It is another thing to feel it while you are parenting your typical children. However, it is really truly the best thing to fully experience it when you parent a child who has a disability. This is what parenting is all about. Unconditional love is beautiful.
-Karyn

Some Additional Responses to the President

Check out this blog - it is awesome!
http://sarahely8989.blogspot.com/2009/03/late-breaking-news-letter-to-president.html

Also Riley sent a response to President Obama. Here it is...

I don't think it is very funny to laugh at people with disabilities. It is very wrong to do that.
Riley, age 8

I love this kid - he has a great heart and fabulous morals! You rock Riley! Be like Riley and do something!

-Karyn

Dear President Obama,



Dear President Obama,

I would like to first state that I am a supporter of yours. I am, however, very disappointed about the recent joke you made about the Special Olympics during your appearance on the Jay Leno Show. I am most concerned about what this joke says about your integrity and the integrity of our country as a whole. As you know, Congress passed the Americans with Disabilities Act in 1990 to address the need for equity in the treatment of U.S. citizens who have a disability. Issues that precipitated this legislation included the following: a history founded in the institutionalization, mistreatment, and victimization of individuals with cognitive disabilities; the continued discrimination experienced by those with disabilities in educational, community, and workplace environments; and society’s perpetuation of a belief that those with disabilities are inferior through the use of hurtful slang and jokes that are viewed as humorous and acceptable by the mainstream culture. Individuals with disabilities are a minority group within our society that has a similar history as other minority groups in the mistreatment by the majority culture.

I appreciate that a formal statement was made about the joke. I also appreciate that you immediately contacted Tim Shriver of the Special Olympics, even before the show aired, to directly apologize to him. But what you do now is most important and will have the greatest impact on how you are seen as a President in terms of issues involving equality and discrimination of individuals with disabilities. The saddest part of the entire situation was the laughter after your joke. This demonstrates the continued attitude our society has about those with disabilities. This is the same attitude that allowed individuals to be mistreated and victimized at Willowbrook State School in the 1960s and 1970s. Individuals with disabilities are seen as an acceptable target. Why did the audience laugh at this hurtful joke when another joke about another minority group may have been immediately deemed as taboo? Why didn’t anyone stand up in the audience or studio, including Jay Leno, and tell you that this was wrong? Why did it take refection before the cry of outrage about this joke? Why do we continue to believe that it is appropriate to joke about those in our society that most need our support? You must take action to show that you are directly advocating for those with disabilities. You need to make this an important, visible part of your administration. You need to show you have integrity to do something about this issue. Anything less will be disappointing to me, my family, my friends, and especially my daughter, who will someday proudly participate in the Special Olympics. This is the Civil Rights Movement of today – please be the leader in this cause.

Thank you for your time and consideration of this matter.

Sincerely,
Karyn

Please be a Quinn's Crusader and send a statement to President Obama at: http://www.whitehouse.gov/contact/

Thank you for all of your support!

-Karyn

Wednesday, March 18, 2009

Quinn is a Gift

For those of you who are not as familiar with Down syndrome, I would like to share with all of you one of the best books out there that was such a comfort to me when I was pregnant with Quinn. The book is called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. This book is a collection of essays written by many different mothers, and it centers on their experiences in having a child with Down syndrome. It reflects upon their reactions to the diagnosis and the meaning they have since attached to this event in their lives. If you are interested in this topic or just gaining a better understanding of the experience, I highly recommend this book. Up to the point of publication of Gifts, it was difficult for many expectant or new parents to Down syndrome to see published positive portrayals of the experience of having a child with this diagnosis. This book was instrumental in my ability to see Quinn as a gift in our lives. I am also attaching two clips - one shows a news interview with some of the mothers featured in the book and the second clip involves beautiful photos of the families set to music. I hope you enjoy this beautiful book.



Sometimes Miracles Hide by Bruce Carroll

They were so excited it was coming to be
Two people so in love, now soon there would be three
For many years they'd planned it
Now it would soon be true
She was picking out the pink clothes
He was looking at the blue

The call came unexpected
The doctor had bad news
Some tests came back and things weren't right
He said, You're going to have to choose
I'll wait a week for your decision
Then the words cut like a knife
I'm sure everyone will understand
If you want to take its life

Though they were badly shaken
They just had no choice
They knew God creates no accidents
And they were sure they had His voice saying

Sometimes miracles hide
God will wrap some blessings in disguise
You may have to wait a lifetime
To see the reasons with your eyes
'Cause sometimes miracles hide

It seemed before they knew it
The appointed day arrived
With eager apprehension
They could hardly hold inside
The first time they laid eyes on her
Confirmed the doctor's fears
But they held on to God's promises
'Cause they were sure they both could hear

Sometimes miracles hide
God will wrap some blessings in disguise
You may have to wait a lifetime
To see the reasons with your eyes
'Cause sometimes miracles hide

Though she was not like the other girls
They thought she was the best
And through all the years of struggle
Neither whispered one regret
On the first day that she started school
And took her first bus ride
They remembered the words that God had spoke
And they both broke down and cried

See, to them it did not matter
Why some things in life take place
They just knew the joy they felt
When they looked into her face

Sometimes miracles hide
They say, "God has wrapped our blessing in disguise
We may have to wait this lifetime
To see the reasons with our eyes
But we know sometimes miracles hide"

Tuesday, March 17, 2009

Quinn's Story

For St. Patrick's Day, in Quinn's honor I would like to tell her story. This is a story I wrote about the pregnancy and her first two months of her life (it was written December 2007)...

I wanted to experience a pregnancy one last time – go through all the events and think of it as my last hurrah when it comes to having a baby. It would be my final time. I already had two little boys, Riley and Aidan, and was ready to have our third and final baby to complete our family. However, this time was not so easy. I had two miscarriages before I became pregnant with Quinn. I never experienced this before. During both miscarriages, they could not see the heart beat on the 8th week – so I became obsessed with the heart – please lord let there be a heartbeat, and thankfully with Quinn there clearly was. I was so happy that I didn’t give up and that I persevered to have my perfect little one. This time everything would work out and I will get to experience things one last time like I planned.

We called the baby Quinn from Day 1 – boy or girl, this would be the name, my little Quinn. Things were going along as they should with the pregnancy and then WHAM – first problem, my husband was laid off of his job at the end of April. No problem, I work two jobs, it will be more stress, but we will survive. Then the exciting day for the ultrasound came, June 11, 2007. I was focused on knowing that the heart was ok (miscarriage one and two made me obsessed with the heart), and finding out if Quinn was a boy or girl. I wasn’t really focused on much else. I really didn’t take the meeting with the genetic counselor seriously; it was just formality because I was 35 years-old. Nothing that big ever happens to me anyway. The ultrasound was going fine – heart looks great, it is a girl!!!! Then WHAM – “we see some mild ventricularomegaly,” “might not be anything,” “would recommend an amnio.” I went ahead with the amnio, nothing that big ever happens to me anyway, so what would it hurt? The next day a telephone call wakes me up from a nap. The genetic counselor says “I’m sorry to tell you that the baby has Trisomy 21.” The FISH results came back and I guess everyone, including Quinn, didn’t realize that nothing that big ever happens to me. I felt so stupid, here I was focusing on the heart when there is so much more to worry about – how could I be so foolish?

As is the story of my life, I didn’t have time to deal with this. I had to go to my second job. I had to help people deal with their problems. I didn’t have time for problems of my own, didn’t everyone realize this? Didn’t Quinn realize this? Didn’t my husband’s boss realize this when he laid him off? Come on now everyone, you aren’t giving me any break here. Later that week we went on vacation; it was already scheduled. We had to go, get on with the normalcy of our lives. There were emotional moments on that trip, but there was also a moment of clarity. We met our first person named Quinn, a tour guide on our sightseeing expedition. I was so excited to actually meet someone with the name! Then at the same place, we stumbled upon an adult woman with Down syndrome. She was there sightseeing on her own. She looked independent. I almost felt like a stalker as I watched her. Would Quinn be like this? But she wasn’t that stylish. You see, I have this image from my high school days in my mind. 1980s photos of people with Down syndrome. Students in my high school with Down syndrome. The clothes, the glasses, the haircut. It sounds bad, but that was etched in my mind. I remember learning about Down syndrome in high school. I remember thinking how sad to have a child like that, as my teacher was lecturing about the topic. Fast forward in time…that’s karma, and now it is me. I can’t believe this.

The best thing about a prenatal diagnosis is that you have time to educate yourself without having a baby demanding attention. So I began educating myself. Attending trainings on developmental disabilities. Reading books – eventually learning stay away from the medical what ifs and just sticking to the positive stories. Meeting families – oh can I say lovely families with beautiful, beautiful children. My boys were so taken with these kids and would talk about them, such things as “that guy was really active” “that girl was so cute.” I started to think that maybe things would be ok after all. My moment of clarity was when I was holding my then three-year-old, Aidan, something that didn’t happen all that often – he is so “on the move.” He fell asleep in my arms. I was looking at him and then it hit me, I would love him no matter what. That is the same for Quinn. Day by day things started to get a little better.

As for the pregnancy, things progressed. Appointment after appointment – specialist after specialist – hey this wasn’t at all like my other two, wasn’t that the point – my last hurrah and now everything is so different. But the perinatologist was positive. He wasn’t the most empathetic person in the world, but as these appointments progressed, I could see a change in him – an excitement. He would talk about how great that it is that Quinn doesn’t have any birth defects, how great it is that she is growing all so so big, how great it is that there are no markers (the mild ventricularomegaly went away!). He would actually look excited. My ob/gyn was excited and supportive. Maybe things would be ok after all.

Then we moved to having to do the non-stress tests and biophysical profiles. Hey, this wasn’t like my other two pregnancies, where is my last hurrah? These tests are making me stressed. The final week (Week 35) I had a breakdown when I failed a biophysical profile and had to do a non-stress test and had to cancel my lunch plans – a lunch I was looking forward to as I was still working nonstop supporting my family. I started crying in front of the nurse. She said, “Oh your baby will be ok.” I told her I KNOW Quinn will be fine, I, myself, am who I am worried about. That started my next mantra, Quinn would be ok, and I just know it.

Well that little girl came on this earth shaking my life up, as she has done since her conception. On the first day of the 36th Week I did not feel her move. The doctor made it clear that I should go in when that happens, so it being a Saturday, I paged the doctor on call. She told me to come in to the hospital to get checked out. I told my husband and two sons not to worry because I would only be a little while and drove myself to the hospital. Nothing that big ever happens to me anyway. Remember that, I foolishly still believed it. I got checked out, things looked fine, only that I had to do a non-stress test (yippee given my breakdown a few days earlier) and then I could go home. I called my husband to say I would be home by 10pm. I was all set up for the test and laying there by myself when my water broke. Oh that girl – won’t she give me a break – doesn’t she know that things like this don’t happen to me? She is more difficult than the boys after all. What is up with that? Then there is more, she is breech and now my third pregnancy, the one I want to have to experience things ONE LAST TIME means that FOR THE FIRST TIME I have to have a C-Section!!!!! A flurry of calls, activity, and then she is born 10:34 pm on October 20th – four weeks early, 7 pounds 9 ounces 18.5 inches long and COMPLETELY HEALTHY. Her mother on the other hand, was stressed and dazed. A few days after delivering her, Quinn struck again – now mommy had Bell ’s palsy. Nothing with this pregnancy was as expected. I can’t assume nothing ever happens to me anymore!

Fast forward in time, Quinn is now over two months old. Just looking at her, this calm comes over me. She will be fine. I know it. And this I KNOW is not some foolish assumption about my life like the “nothing like that ever happens to me” idea. Quinn is something – she is not what I expected, but she is what I needed. You see I know she will teach me all sorts of things. I am already learning. You can’t assume anything. People told us our first few weeks with her would be hectic – all the appointments. We had none, she had no health problems. We only had the well baby check-ups. People told us about the low muscle tone. Her muscle tone isn’t that low. But now her daddy’s unemployment is seen as a blessing, as he works with her daily on her physical therapy. Quinn is always reminding me that you never really know how things will go – that is her biggest lesson to me. She tells me that we just have to be able to adapt to what happens.
Quinn is always telling me that things will be ok. Her first smile was at her baptism at 8 weeks old. She was just baptized and we returned to our seats to sing the hymn “I was There for Your Borning Cry.”I was looking at her thinking about what her future might hold and she SMILED. She will be ok. She just tells me that. She started sleeping through the night at 8 weeks old too – just like her brothers. She will be ok. She watches her brothers wrestle around on the floor, before you know it she will be in the mix. I just know it.

I have moments still. Like when I saw a mother and her adult daughter with Down syndrome at the grocery store. Fears swept in. Fears taking me back to my assumptions about Down syndrome that I made in high school. What it must be like to have a child with Down syndrome, the clothes, the haircut, the glasses, just like those 1980s photos in my high school textbook and those students in special education at my school. But I am getting better at coping with these fears. Quinn just shows me that she is unique. I can’t assume anything except that she will be ok – this I KNOW. I owe so much to my girl Quinn. She is mighty, strong, miraculous, and wise. She is exactly what I needed in my life, even though I didn’t recognize it at the time.

Monday, March 16, 2009

The Secret of Success

So all this talk of how Ferguson (2003) characterizes the predominant views professionals have of us parents of children with disabilities, may seem like it is all doom and gloom. But Ferguson gives us hope and talks about the importance of looking at how parents succeed in their journey raising their child with a disability. Let’s not just focus on the negative aspects, let’s look at the positive things, the success stories – what it takes to be able to look back and recognize that you succeeded in this journey. I don’t know about you, but this is my ultimate goal.

One model he looks at involves two important factors worth noting – what resources does the family have (remember the importance of that) AND how does the family define the diagnosis. On the last point, I am still working on creating my path, but I do think that Quinn having Down syndrome is making our family stronger, more sensitive, and closer. I doubt we would be where we are today without her in our lives. The biggest change I see in all of this is in the sensitivity in our boys. Yes, even my wild guy Aidan is more open to differences. He was talking today about how Quinny may become a ballerina. Very cool given her sure-steps and everything! And with Riley, let’s just say that his heart is just so beautiful.

Ferguson also talks about the importance of three characteristics families must have to succeed – they must be adapting, evolving, and active. You must be able to adapt to change. The stress level will go up and down over time and then back up again. It is very important to be able to adapt and not be rigid in how you approach things. Remember my discussion about grief and loss – things can go back and forth, so you must be able to adapt. In addition, your concerns change over time. I am still very early on in this journey. Later we will be experiencing different transitions and struggles. This not only relates to adaptation, but the evolution of your child’s development and needs, and there are changes that take place in what you must face. Your needs evolve. Finally, you must be active. Have routines, go out, connect with others – this counters those views from the 1950s that lean towards isolation. People must see us out in the world – this will only aid awareness and sensitivity over time.

The last positive part that Ferguson notes is all the positive outcomes of having a child with a disability. If you play your cards right and become one of the success stories, these can include improvement in the following: coping skills, family harmony, spiritual growth and shared values, shared parenting, and communication. I cannot emphasize how much Quinn has changed my life and the life of our family. I just have to keep going back to these important components and secrets of success. We should look at these on a regular basis and think about what we need to do in order to continue to develop – how do we define the diagnosis; do we have our resource; and are we adapting, evolving, and being active? It should be about positive growth and success, not pathology. I challenge all of you who are in the helping professions to think about this in your work with clients, students, families, etc. So ends my Ferguson discussion….He definitely gives us a lot to think about, and I am happy to have found his work.

-Karyn

Sunday, March 15, 2009

Parenting Isn't Just Parenting Anymore

For Ferguson (2003), there is also a third perspective in the professional literature viewing the ability to cope in parents of children with disabilities. The behavioral approach examines family reactions to the diagnosis of their child and subsequent changes in their behavior. This approach examines such things as role disruption, marital discord, and social difficulties. It is out of this perspective where we hear that parents who have a child with a disability may experience increased difficulties in their relationship with one another. This is another area that can assert pathology, as was the psychodynamic approach. What this approach has not accounted for is that parents of children with disabilities have a lot more to worry about given increased responsibilities and the increased need to advocate – and this is what may increase these difficulties in their life versus just the diagnosis of their child. For instance, in our family we thought we knew what this parenting thing was all about. This was our third child and we THOUGHT we knew what we were getting into. In came the diagnosis and, more importantly and of greater impact, a world of all new things to know and learn about, like…

Quinn’s financial assets have to be kept to a minimum. If she has too much money or too many assets, it will make her ineligible for services when she is an adult. I had a meltdown not too long ago because my mother purchased some savings bonds for Quinn that she didn’t tell us about – oh no, we must know and keep track of every little penny so it doesn’t go about a certain number. And what happens when we are no longer around, who will follow. Hopefully our sons will, but that is a lot to put on them.

Life insurance is hard to come by for children with Down syndrome. They are seen as “risky” to insure, even someone like Quinn who has absolutely no health problems. Imagine being told that your child is too risky to insure. That feels lovely. We finally found a company to insure her, but now we have to monitor this so it doesn’t impact the money situation noted above.

We have to set up a special needs trust so we have some money for her when we die, but this money cannnot be directly in her name. This was our New Year’s Resolution and it is already March and it isn’t done. Note to self to get on that.

We have to know about birth to three, early intervention, and special educational law and what services we have a right to. Plus we have to advocate and be pushy despite all the other things we have to do. And then add in that we have to do paperwork on other funding possibilities like Katie Beckett, which covers a lot of Quinn’s therapy because we are going private. Plus that relates to the whole thing about money too - she can't have too much or she won't get Katie Beckett. Getting a headache yet?

We have to learn and implement therapies and exercises at home. You can’t just chill with your child. And if you do like anyone one else would do and just let her sit there while you are doing other work, you start feeling guilty. Actually it is Neal who has really taken over the therapy thing. He has had to become a paraprofessional, feeling like he always has to be doing something to assist in her development. This is a full-time career for him. Parenting is not just parenting anymore.

The point is that of course there are behavioral changes in a family’s life, especially in the way of role disruption – there is just so much to do. Just when you thought things were going to go as expected, you enter in a whole new world. And you may tend to feel you have to anticipate what may be the next problem or thing you need to know. But support – emotional and in resources –is the key. Krauss and Seltzer (1993) noted that when given the appropriate resources, families with children with disabilities fare no better or worse that families without children with disabilities. That is what we really need. If we had more resources and support, our job as parents would be a whole lot easier. But I understand that is a view that many can have and our struggle is not an unique one at this time. But Quinn is all worth this - and she has taught me what unconditional love is really about.

-Karyn

The Meaning of Quinn's Name

A while ago, Quinn’s Godmother Janelle gave Quinn a picture that hangs just over her crib in her room. This picture gives me so much comfort, so I try to read it at least twice a week. This is what it says:

Quinn
Origin: German
Meaning: ‘queen’
Quick to give herself to a worthy cause
Her smile is most unforgettable
She helps others to achieve their goals
She treats her family tenderly
Quinn believes in striving for excellence
She’s admired for her contemporary style
She enjoys new and interesting experiences
She’s considered wise by all who know her

Quinn has helped us all become crusaders, and to learn, grow, and achieve. She is wise and loving. And she will take adventures and excel, while of course having her contemporary style. This picture has every wish I could possibly have for my daughter listed right there in black and white. I just have to keep reminding myself that she will just achieve all of them, maybe in a different way than others, but that is what makes Quinn the blessing that she is. Thanks Janelle for the picture - you have no idea how it has helped me.

-Karyn

Saturday, March 14, 2009

A Sign of the Society & Times

Continuing on from my previous discussion…Ferguson (2003) also talks about how a sociocultural view can impact how professionals view parents’ ability to cope with the diagnosis of their child. How they cope and respond is influenced by the time and society they live in. Looking at the history of the United States and what was the norm in the treatment of children with cognitive disabilities, we see that there was pressure in our society in the 1950s to institutionalize children with such needs. Documentaries that I have already discussed, Where’s Molly and Unforgotten: Twenty-Five Years After Willowbrook illustrate this. This doesn’t mean that every parent institutionalized their child with cognitive disabilities, but that was by far the norm. If you ever watch either one of these films, you also see the language that was used – the “r-word” and how uncomfortable people appeared in even mentioning or talking about this subject. Fast forward to the 1980s – this follows the passage of P.L. 94-142 in the 1970s, which gave children with disabilities, ages 3 to 21, right to a free, appropriate education in the least restrictive environment. We had greater acceptance of children with disabilities in the 1980s, but there were still stereotypes, difficult words, and jokes. Continue to fast forward to 2009. We have more advocacy and support groups which aid parents. We belong to such groups and they have been a great sense of support for us. We know that we are not alone, and there is not the code of silence that there once was. There is a preference now for person-first and politically-correct language, but as we well know the other does still occur, with jokes, movies, and slang making fun of individuals with cognitive disabilities. Don’t get me wrong, I am happy that I live in this time and in this country, but one can only hope that it just gets better and better.

But remember how parents may cope and how professionals work with these families is not only impacted by the time, but by the society too. Rosa Monckton wrote an article about how Bulgaria views disabilities. Monckton, the mother of a child with Down syndrome, traveled from the United Kingdom to Bulgaria to learn about such children placed in orphanages. Here is an excerpt from the article:

“In another institution I was taken around by a blonde Cruella de Vil: stiletto heels, heavily made-up, clutching a clipboard as we marched along a corridor. Stopping at each window, she consulted her list, took the pen from behind her ear and pointed: ‘This one cerebral palsy, this one very handicapped, this one Down's Syndrome, this one don't know....’

I asked to go into one of the rooms and picked up the nearest child, a living skeleton. And what was wrong with him? He was blind. Just blind. But now he was starving to death, rocking and banging his head against the side of his cot. On another visit, I asked the director, a paediatrician, about a child with Down's Syndrome. Why was she here? ‘She has Down's Syndrome, she will die.’ I told her that this was not true, that these children could live fulfilled lives. Angered, she asked: ‘Are you a doctor?’ No, I replied, but I was the mother of a child with Down's Syndrome. ‘But you are not a doctor, so you don't understand... these children have no use. They should never have been born.’”

If you would like to check out the whole article, you can do so at this link: http://www.timesonline.co.uk/tol/comment/columnists/article5720609.ece

In closing, I really am at a loss of what profound thing to say other than I am just saddened by how many beautiful children who just so happen to have Down syndrome have to suffer because of prejudice, ignorance, and our own failings as human beings. This not only occurred in the past in our own country, but is happening today in other places in our world. Please do your part to make sure that this doesn’t continue by spreading awareness to others. Thanks.

-Karyn

A Riley Moment

This morning Riley and I were cuddling with Quinny. He started to talk about her and said that having her is better than having any other sister. He said it was so great because he can help her learn, watch out for her, and help her become independent. Plus he can learn so much about Down syndrome and special needs along the way. He actually said that! I want to clone this kid! I am the luckiest mother in the world to have three beautiful children. Riley gives me comfort to know that even after Neal and I die, he will be around to make sure Miss. Quinn will have a good life.

-Karyn

Friday, March 13, 2009

Neurotics Anonymous

I have started to do more public speaking about my experiences as a parent of a child with special needs. To me, it is all about awareness, if you couldn’t already tell this from this blog. Unfortunately there needs to be more awareness of what parents go through when receiving and coping with a diagnosis, especially when it comes to the world of helping professionals. As a helping professional, I can admit that I was clueless about all of this before I started this journey.

Recently to prepare for a presentation, I did a little research on the nature of the published professional literature on parents with children of disabilities. I am afterall one of the parents now, so I should know what is said about me, right? In the Handbook of Disability Studies, Phillip M. Ferguson (2003) gives a very nice overview of what has been published about parental reactions to their child’s disability. I will be discussing these in a number of postings. I really appreciate Ferguson’s work on summarizing the literature on this subject and hope you find this interesting as well.

Ferguson identifies the psychodynamic view of parental reactions as being most prominent in the published literature. He notes that this area is receiving less attention more recently, but that the single largest number of publications centers on this view. Psychodynamic (quick…think Sigmund Freud) looks at defense mechanisms and neurotic paths that parents can take in reaction to a diagnosis of a disability. Doesn’t this sound uplifting? So we see things like hostility, denial, grief, and guilt. These are viewed as problems. Pathology. But Ferguson raises a great point (and becomes my hero in the process) – he states that it may be possible that through viewing parents this way some professionals may avoid having to look at their own inadequacies in their performance with clients. Like did they give the diagnosis in the best way possible – or was it over the telephone and one parent having to tell the other like was in our case? Are strengths discussed? Or is it just centered on weaknesses? There are so many things that professionals should consider in talking to parents about the needs of their child. Just who might be the neurotic one here? The parent? The professional? Both? Neither? Let’s try to get more and more possibilities of it being neither! This can only be done through awareness and learning. Actually Ferguson also states that what was once seen as denial may actually be more of a denial of insensitive terminology used, like the r-word. Another area for awareness. So much to do, but so little time, right?

-Karyn

March 21

03/21 is World Down Syndrome Day. The date symbolizes Down syndrome because there are three copies of the 21st chromosome.

Down syndrome was first described in 1866 by Dr. John Langdon Down, hence the name Down syndrome. But it was not until 1959 that the cause of Down syndrome was known. This year is the 50th anniversary of the Professor Jerome Lejeune's publication indicating that an extra copy of chromosome 21 is the cause of Down syndrome. Both Lejeune and Down contributed their own time and money to advocate on behalf of families and individuals with Down syndrome.

For more information about World Down Syndrome Day, please visit www.worlddownsyndromeday.org

Please remember that March 21st is World Down Syndrome Day and please tell someone about it! Thanks!

-Karyn

Good Grief

In 1969 Psychiatrist Elisabeth Kübler-Ross wrote a book called “On Death and Dying.” This book outlines a five stage model of grieving that Kübler-Ross believed most individuals experience when faced with their own terminal illness and impending death. This model has been applied to grief and loss situations, including going through the loss of someone significant in one’s life. Interestingly, at the end of her own life Kübler-Ross was plagued with a series of health concerns and told others she was in the acceptance stage of her own death two years before she actually died.

This model of grieving can also be applied to having a child with special needs. As Emily Perl Kingsley stated in Welcome to Holland, the anticipation of a child is met with having so many dreams and expectations. When you find out that the experience will not go as planned, there is a loss there – a loss of a dream. I have a beautiful daughter, Quinn, and I love her with all my heart. But I am also experiencing a loss of what I envisioned life would be with a daughter in my life. I guess you could say that everyone experiences that to some extent because one’s children rarely live 100% up to one’s expectations, but there is a loss there when you learn that your child will face more challenges in her life than you expected and of course wanted. Nobody wants their child to have such challenges to overcome.

Kübler-Ross’ model is as follows:
Denial – “This can’t be happening to me!” Oh I remember that one. When I was awakened from a nap at 18 weeks of pregnancy and heard those words “Trisomy 21” I was in shock. I thought there was no way this was happening to me. I proceeded to go on the internet and look up how inaccurate amniocentesis tests are. I can smile at this now, but what I basically found was how ACCURATE they are – but that didn’t daunt me from still searching and searching away on the internet. I think it is safe to say that I am no longer at this stage. There really is no denying it anymore.

Anger – “How can this happen to me?!” Anger became directed at some of the reactions I received from people. It is generally not nice to say to someone “So are you going to terminate?” when they proceed to tell you the news that their unborn child has Down syndrome. I also was ANGRY at a doctor filling in for my regular physician. He obviously did not read my file. When I reminded him that the baby had Down syndrome, he slumped down in a chair and said “You know they are r-word, right?” and he looked depressed and bothered. I thought, “Gee I am sorry I brought you down with this news!” In my experience, my anger tended to be directed at the insensitivity of some individuals. Some parents may direct it at professionals in the system if they feel their child’s needs are not being met. It can also relate to transference of feelings from one insensitive person that you had to interact with to someone who reminds you of that person given their position or personality.

Bargaining – “Maybe if I …” I think I am still here to some extent. Well to tell the truth, I think a parent can go back and forth between all of these over time depending on the situation and what you are facing at the time, but a higher percentage of time can be spent on the higher levels as you work through some things for yourself. Getting back to bargaining, this is where I am in my obsession and quest to get Quinn all the services I possibly can. If I do that, maybe she will be higher functioning. Sometimes I feel so desperate for this. This could also come in the way of experimental treatments that may be out there. They may have some benefit, but parents may reach to them because of this hope things may be improved in their child’s life because of them.

Depression – “I’m so sad, why bother?” This also comes and goes for me. I don’t allow it to last long (quite frankly I am busy and distraction on other things I have to do helps me in this way). But the depression comes when I think about the future. I just get sad not knowing what things will be like. Sure I don’t know what things will be like for the boys either, but it is just more complicated with Quinn. Will she have someone looking out for her if we die before her? Will she find love? Will she be assaulted and victimized if we aren’t around – that is a huge fear for me – I just want her to be safe. Now that I am thinking about all of this, I guess I am still in denial on some things. To help guard against the depression, I have this thought that Quinn WILL marry either George or Cameron (two awesome little guys with Down syndrome). Now I know she probably won’t, but I can hope, right?

Acceptance – “Things will be ok.” I go back and forth into and out of this. Some days I feel that I am totally fine and other days are rough. I think this is common for parents with children with special needs. Like I said maybe in the future I will spend more time here and less time in the other areas. I can only hope. Acceptance also comes in finding the right balance between therapy and life. Getting your child services, but not letting services run your life.

If I had the power and choice, I can be honest with myself and know that I would have never have requested to go through this in my life. It is not something that I wished for. But now that I am experiencing this, I realize that I am learning so much throughout this process. Maybe this is a good kind of grief for me. Maybe it is something that will make me stronger, better, and more empathetic to others. Once again, Quinn is my wise one, and she knew just what her mommy needed in her life.

-Karyn

Tuesday, March 10, 2009

The Moral to the Story

I often wonder why having a child with Down syndrome happened to our family. I don't mean a "Woe is me, why me??" that kind of thing. That feeling has passed a while ago (let's hope it stays that way). I mean more of what is the meaning of this in my life? I work with a lot of individuals who go through some difficult and unexpected events in their lives, and they have difficulty understanding the meaning behind these events. You can get stuck in denial and/or despair and/or anger, or you find some meaning behind it all. I have always tried to be empathetic to my clients going through difficulty moments, but now it is a bit different for me - I think I can actually relate on some level. I just feel that Quinn is helping me in so many areas of my life. Some people call individuals with Down syndrome genetically enhanced - what I really think it is that they can enhance parents and others around them.

Sometimes an event that brings you so much pain can also bring you so much comfort and happiness. Sometimes you have to decide if you are going to be a victim or a survivor. Sometimes it is not a disability, but actually an ability. And sometimes you take four steps forward and then slide three steps back. But that is alright. This is a journey that I am learning from. I think it will be a journey that changes me more than any other one.

You know how you read those fairy tales and there is a moral to the story? Won't it be interesting at the end of my life to know what was the moral to my story? I really hope it is a good one, and it centers on this journey as a family.

-Karyn

Monday, March 9, 2009

Update on Willowbrook

I finished the documentary that I was talking about earlier, the film Unforgotten: Twenty-Five Years After Willowbrook. I highly recommend the film for people who are interested in this topic. It follows at least four families of individuals who were placed at Willowbrook during the time of Geraldo Rivera's investigative reporting. It shows what their lives are like now and family members reflect on the experience of having their child, brother, or sister at Willowbrook. One family really stood out. Guess why? I know you are saying, "Um I guess it would have to do with someone having Down syndrome, right?" I know it is shocking that I would be focused on that! Anyway, it was such a powerful story. Patty, the child who was placed at Willowbrook, had sisters who talked about their experience. They mentioned how Patty was such a beautiful baby and how they just loved her. Then came the day that she was placed at Willowbrook. They never really knew why and it wasn't until they saw a photo of a "mongoloid" child in a collection canister on a store counter that they recognized that their sister was similar to this child. That is what they used to call people with Down syndrome and the term still slips out here and there, although it is no longer accepted. They also shared that they road a bus with other families to visit children at Willowbrook, but nobody talked to one another - everything was so disconnected and the support wasn't there. Another powerful comment from the documentary was how when they would walk up to Willowbrook, they always saw a child in the window upstairs looking out calling for mommy or daddy. That just breaks my heart. Remember how I said that stuff like this is still going on today? Why don't you visit the button I have to the left side of the blog? It is for Reece's Rainbow. On the connecting page go to the bottom and click on Russia. Look at the girls with Down syndrome who are in an orphanage in Russia. That could have been Quinn at one time in our own country. I am thankful that I live in this period of time. I am thankful that I feel that I can talk to others and share my experiences with all of you. I am thankful that I don't have the shame. I am thankful that I am learning and growing every day.

But I would be more thankful if all children with Down syndrome throughout the world were accepted and loved in families and homes of their own. I would be more thankful if there wasn't a stigma attached to disabilities. I would be more thankful if the dreaded r-word was gone, vanished into thin air. And I would be more thankful if my daughter had easy access to services, and I didn't have to fight fight fight for stuff (and seem like a five letter word that starts with B and ends with h). But for right now, tonight, I am thankful for what I have. A daughter that doesn't have to see the inside of an institution, who has brothers who love her, is healthy and medically cared for, and who has the safety and security of a home.

-Karyn

Sunday, March 8, 2009

The Power of Words

By now you might be wondering why I am obsessed about this r-word thing. You may be thinking, what is the big deal? Karyn, aren’t you being a bit sensitive? Okay, I admit that I am biased. I have a vested interest in this. But I do think use of the r-word needs to be taken more seriously. Even before I had Quinn, I had to occasionally use the diagnostic term from the DSM-IV-TR (used by psychologists and psychiatrists), which is diagnostically called Mental Retardation. Every time I said that term, I felt a twinge in my stomach. It is just a term that is centered and built on such a difficult history – something I talked about in previous posts related to past institutionalization and stigma of families with children with cognitive disabilities. In my profession, I always leaned to saying “MR” or saying Cognitive Disability (the term used in the school systems in my State). It is my opinion that the American Association of Psychiatry (who publishes the DSM-IV-TR) needs to change the diagnostic term Mental Retardation to something more appropriate in their next revision. The r-word has turned into a slang term, used in jokes, insults, etc. It is about time my profession does something about this issue and use a more sensitive term. The APA took homosexuality out of the previous editions DSM because of how society changed, and APA also changed the term Manic-Depressive to Bipolar Disorder, so why aren’t they doing anything about MR? That would be a nice first step, but more needs to be done.

I was at a meeting with the other clinical staff from work not so long ago. In the meeting, people started to use the r-word, or retarded, to talk about a client. It was like I was being stabbed in the chest over and over again. I looked around the room wondering why can’t we see how these words impact people? Why can’t my own profession get their act together? And then I mustered up the courage to speak out and say, “Can we please use the appropriate diagnostic term MR or Cognitive Disability?” One of the individuals who said the r-word in the meeting approached me after to say that he was sorry and he will be more aware of the words he uses. He didn’t do this to intentionally be hurtful; it was just out of ignorance or just not thinking at the moment. I am sure others felt uncomfortable during that discussion. How many times as people do we not say something because we don’t want to be bothered or stand out? Instead we just sit there and think in our minds that something isn’t right. We don’t want to rock the boat, so why speak out that this word isn’t appropriate? They will stop using it soon enough, so why say anything? Well I just can’t do that anymore. I have a little girl at home who is counting on me to do the right thing. Something has to change for her to have a better life. Do you know that the Special Olympics conducted research on how people see individuals with cognitive disabilities? In their Multi-National Public Opinion Study of Attitudes toward People with Intellectual Disabilities they actually found throughout the world that a large percentage of people still believe that people with cognitive disabilities should be segregated in the schools and workplace. This is my daughter they are talking about. Words reflect our society’s attitudes and I so hope that you don’t join a lot of people and just stand by and watch when a group of people who have not harmed a soul and have a heart as pure as gold get picked on, put down, or treated insensitively whether it is because of ignorance or hatred. Please please please say something the next time you hear the r-word used, whether it be by a group of professionals or a group of teens. Please start discussions about the use of the r-word and how it needs to change. Maybe show them some of the resources I have on here. Please.

Lastly, I must say that I love Soeren Palumbo. Every time I see him I think of how someday Riley and Aidan may be like him, giving such beautiful speeches and loving their sister so much. I have posted about him before. I came across another speech he made called the Power of Words (hence my title). I have the link below. Please go to this page and view this speech. It is similar, yet different, than the other one. He talks about an actual situation he has been in with his sister, being in a store and seeing others make fun of his sister, calling her the r-word. Think this doesn’t happen? Think again. One person actually said that they hate it when the “r-word“ are allowed in THEIR store. Sound like another hateful time in our history, doesn’t it? But the worst part was that nobody who heard this reacted. They just continued on doing their shopping like this is an everyday occurrence. Please don’t fall into this group of people who do nothing. By doing nothing you are making it okay to treat people in a hurtful manner.

http://www.specialolympics.org/video.aspx?id=6066

-Karyn

Saturday, March 7, 2009

What is Perfection?




What is perfection? Do we really even know? You look at the media and you see people like Angelina Jolie and Jennifer Lopez who are held up to be the standard of beauty and perfection, but is that really what it involves? Tonight I had the privilege of holding Quinn for quite a little while as she was dozing off to sleep. That is kind of rare for me given the combination between my schedule and her temperament. And I think I saw perfection. She was looking at me deep into my eyes as I was looking at her. She smiled and moved her foot to purposefully bump into my face (she must have been watching her brother Aidan who seems to like to do that too). Then she smiled HUGE – like “ha ha I got you mom.” I looked at her skin – I saw perfection. I looked at her eyes – I saw perfection. I looked at all those features of Down syndrome and I saw perfection. How do we know that we aren’t all meant to have three 21st chromosomes? Maybe it is the rest of us who are the ones who are missing something and because of this it is all the rest of us who are really the ones who are disabled. I was on my island today and LOVING it!

-Karyn

More on 3/31/09 - Plus John C. McGinley Rocks



I had already posted about March 31, 2009 and the eradicate the r-word campaign. Please remember this day and get the word out to others. We would be so honored if you too would be a Quinn's Crusader. Also please watch this awesome interview of John C. McGinley on the Bonnie Hunt Show. Try to get through it without any tears in your eyes; that was difficult one for me.



-Karyn

Thursday, March 5, 2009

Willowbrook - A Sad History Lesson

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

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

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

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

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

-Karyn