Would You Rather?

The last few days I have been on a scrapbooking retreat - a nice way to relax and catch up on capturing memories for the kiddos. My friend Wendy brought a "Would You Rather" book along to the retreat and periodically posed questions to the group. This sparked some interesting conversation to say the least.

At the time of the retreat and Wendy's questions, I never really made this connection, but just right now a memory of something comes flooding back.

It was right after I came back to work following maternity leave. Quinn was just a itty bitty baby. I had a client who out of the blue posed this question to me, "Would you rather have a child who was (insert the r-word) or incarcerated for life?" You see, this client was incarcerated and had disappointed his mother. He was concerned about which direction he would go in the future. Furthermore, another one of his family members had a child who passed away who had some difficulties that got him thinking about the other half of that scenario. So this was something on his mind. It made sense to him to pose this question to the woman he started opening up to.

Here was a person who was asking a question just as a hypothetical situation with no idea that I, the person sitting on the other side of the desk, was actually encountering half of this scenario. It was one of the most powerful moments of my career. I took a deep breath and informed him that I prefer the term cognitive disability and explained that for me personally, it would be more difficult to have a child who was incarcerated for life. We went back to talking about his personal situation. This is why I love what I do - it really challenges me and makes me learn, think, and grow.

But to elaborate more on this situation now (in homage to the wonderful analyses of Wendy's Would You Rather questions), my personal opinion is that it would be more hurtful that the cause of your child's difficulties would be because of their own self and choices. I know there are generally other factors that may coexist with delinquency/criminal behavior- like socioeconomic ones - but in my Would You Rather scenario I think it would be because my child decided to do some illegal behavior without any conceivable justification. This would hurt more than the situation being because of outside forces - like a random event where there is an extra 21st chromosome.

But I think in both situations the parent may feel responsible. Even when it is random like that 21st chromosome, why do we feel guilt when there was absolutely nothing we could have done? I know from personal experience that we do, and there are times that those who have a child who engages in illegal behavior also have no ability to do anything about that either.

What philosophical discoveries we can have from "Would You Rather" questions!

This Would You Rather question is more realistic than some from Wendy's book - let's face it, I will not be given the option of sleeping with Superman or Batman any time soon... But this has all got me thinking about my values, what I see as being important, why I make the decisions I do or why I don't make the decisions that I need to make.

I think if you have the ability to make certain choices, to obtain certain accomplishments, to live your life in a meaningful, giving, loving way, you should. Maybe this is why the incarceration part of the question would be worse to me - the child had the assumed ability and didn't live up to that ability. However, I don't sit on my high "princess" (inside joke) horse and claim to know the answers and live up to these standards. I need to look in the mirror and consider if I am making the choices I need to and living the way that I want to. I know there are changes I need to make for myself personally now - they aren't easy but I have to do them. Wow this occurs at the best time of the year - the new year - time to reflect and work on oneself. What are the chances of this?

-Karyn

To Those With a Prenatal Diagnosis

I now have just over two years in. I feel like I should attend some meeting and announce to the group, “Hi, my name is Karyn and I have had Down syndrome in my life for the last two years.” This occasion must be commemorated somehow – hence this posting. I couldn’t miss my anniversary, June 11 – I was thinking about it all that day (although I was too busy preparing for vacation to post about it then; sorry for the delay).

June 11, 2007 was the day that I received that telephone call with the amniocentesis results. I remember it vividly, “I’m so sorry to tell you that the baby has trisomy 21.” I never thought it would happen to me. But it did. It has.

So what did I do with that time while I was pregnant? I read books like Gifts, I cried many tears, I looked at beautiful photos on downsyn.com, I prayed, I cried more tears, I met beautiful families, and I grieved the loss of what I envisioned my daughter to be.

And now, where am I two years later? I am in absolute love with my daughter. I just held Quinny in my arms moments ago. Her toothy grin, her beautiful skin, she is absolute perfection – just glowing. She is the most beautiful daughter I could have asked for. I call her “little me,” I sing a silly little made-up song to her about her being “little me” and that is exactly what she is – she is me, but most importantly she is the best of me. Better than me. She is the best parts of me times two on that 21st chromosome. That dreaded chromosome that actually made my life better. Every time I look at her she is a reminder of something – she is a reminder that when a difficultly and an uncertainty came knocking at my door, I handled it in the best way possible. I kept strong, listened to my heart, and loved my little girl. She is alive today because of it.

I am actually pro-choice and don’t want to make this a pro-life/pro-choice debate, but I write this post more to say that it is possible to have a prenatal diagnosis and find love in your heart for your little one. Even though roughly 80-90% terminate, it doesn’t always have to be that way. You can make the choice to have this little child. She/he will change your world, make you a better person, teach you what is important in life, and much much more. I don't know it all because I am only two years in on this journey, but I know that little girl is essential in my life.

Unfortunately there are so many articles published about the other side. Recently I read an article about a couple who filed a lawsuit because prenatal testing failed to indicate that their child had Down syndrome when the child in fact did. They say they would have terminated if only they had known. They want money now. But very little is said about the other side, those of us who have the testing and who have their child and are happy they did – so this is what I share on my anniversary. Just know that you can get through this.

For me, Quinn’s day is October 20, 2007. The day of her birth. However, my day will forever be June 11, 2007 – the day I was tested and had to examine what I was made of. Now this is not to say that everything is all sunshine and roses for me right now. I still have difficult times and struggles that I face (if you read my blog you know this), but overall I know I made the right decision.

So I write this to all of you with a prenatal diagnosis right now – stay strong and know that someday your child will look at you with that toothy grin and you will find peace in your decision. It may be hard right now all the tears you are crying, but beautiful moments are to come. God bless you and I hope your pregnancy goes well.

-Karyn

Deep Thoughts

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.

-Karyn

The Scrapbook - Photo 7

Here is the last part. By the way, I have some more to add to the parts that I already completed (a couple of things I just remembered), and I will be editing the entire story. Once I do this, I will put the entire scrapbook story together as a posting(hopefully this week). In the meantime, if you want to see the other parts, here they are - photo 1, photo 2, photo 3, photo 4, photo 5, and photo 6.

The last section of the scrapbook involves my adult life prior to Quinn’s arrival. We see a photo of a wedding day. The photo shows the wide smiles of a newly married couple, but I now know that the smiles would be far wider had we really known the three beautiful children that we would someday have – including the one that we would chose to have despite the scare of a prenatal diagnosis. We see photos of the birth of our two sons, who are blessed to have the beautiful sister that they now have. They will become better men because of her. I now realize that during pregnancy and childbirth I was naïve and took having a healthy baby for granted. Another lesson that I learned from Quinn, for it wasn’t until my third child that I truly realized that having a child is truly a miracle – especially when you have one that has 47 chromosomes. In this section of the scrapbook we see photos of my work with adolescents, some of whom had mild cognitive disabilities or learning disabilities. We can see the passion I have for my career in these photos, but I sometimes missed important things that I now clearly see today – especially the hurtful use of the r-word. There is no more ignoring it for me. In addition, at this time depicted in the scrapbook, I would talk with these young people about what their experiences mean to them, including the experience of having a disability. However, I now know that I was not as fully connected to these discussions as I could have been in my heart and soul, like I am today. For example, recently I spoke with a young man who called himself the r-word and with tears in his eyes, he asked for my opinion of him. This was one of the most significant moments of my career. I felt Quinn’s presence with me and guiding me.

Having Quinn in my life has brought more insight and reflection than I ever imagined. Some people have told me that it is their belief that I was selected to be a mother of a child with special needs given my experiences and personality. I really don’t think this is the case. I am just like everyone else and it was the roll of the dice that Quinn became my daughter. 47 chromosomes just came with the roll. However, I do think there were significant moments in my life that led me to this point and how I would cope once Quinn entered my life. I think everyone has these moments, whether they want to see them or not. If you ask anyone to reflect upon their life after some significant event, I think they could come up with a similar tale as I have. To me, it is truly remarkable how throughout my life Quinn was with me even though I did not know it. She was there, guiding me through good moments and bad. This scrapbook of sorts – even if it is just my memories – really demonstrates my little girl’s presence throughout my life. I love you, Quinn; thank you for going on this journey with me. Thank you for this beautiful scrapbook that you have given me. I will treasure it always. I am honored to be your mommy.

-Karyn

The Scrapbook - Photo 6

Here is the next part. If you haven't read them - these are the links for photo 1, photo 2, photo 3, photo 4, and photo 5.

Part 6:

Now the scrapbook moves on into my graduate school days. We see photos of me sitting in classrooms learning about intelligence tests, the diagnostic criteria of mental retardation, and other concepts associated with the field of school psychology. Little did I know that these things would someday serve me well in my role as Quinn’s mother. In one of my first classes, we watch the film Educating Peter, about Peter Gwazdauskas, a third grade student who has Down syndrome. The film is about his full inclusion in the classroom. It was an intense film to watch – we see the other children’s reactions to Peter – which were not always positive, Peter’s aggressive behavior towards the other children, but then his ultimate success in the classroom. This film created intense debate in the class as to whether inclusion was appropriate or not. I remember sitting there all quiet and unsure about what I believed. Maybe I knew deep down that it would not be so easy and clear-cut for me. Maybe I knew what would be coming without being able to articulate this into words. I sat there during the discussion uncomfortable, wondering why my professor showed this to us and thinking about the difficulty Peter’s parents faced. Now looking back, I remember that my professor also had a daughter with a disability. Maybe she showed us this film to show us the complexity of the situation – her situation. Maybe give us an opportunity to see the parents’ side too. I missed an opportunity to ask her about her opinion, her experience. I regret this. I look at this section of the scrapbook and wish I could go back and do some things differently. There is another photo that also represents a lost opportunity. My first client was a mother questioning the diagnosis of mental retardation for her daughter, a first grade student. I conducted the assessment by the book – interview, observation, standardized testing, and informal assessment measures. All pointed to the diagnosis being correct. I sat with the mother and explained the results. I saw the pain in her face despite her strong exterior. I felt that I did right diagnostically in the case, but now know that I would have been much more compassionate in my discussion of the results. I would allow her to tell her story. I would allow her to speak more about her feelings. I would talk about strengths and support. I know now am a much better psychologist because I have Quinn in my life, but I regret missing opportunities with past clients. However, at least I learned this lesson now instead at the end of my career or not at all.

The Scrapbook - Photo 5

Here is the next part. If you haven't read the beginning, here are the links - photo 1, photo 2, photo 3, and photo 4.

Part 5:

The next section in the scrapbook comes from my undergraduate college years. We see photos showing different, new experiences which expand my experiences and understanding of diversity. Having come from a pretty homogeneous background, I finally met new people who had different backgrounds and experiences. Little did I know that this would later impact me with Quinn, for disability is just another area of diversity, just like race, gender, age, and sexual orientation. In college I learn about special education law – that children ages 3-21 with disabilities are entitled to a free, appropriate education in the least restrictive environment. I in a cognitive sense understood that concept and set out to witness it firsthand in my fieldwork experience in education. This experience involved spending time in the special educational programs at a local high school. Unfortunately what I saw in my own personal experiences in middle and high school were apparent there – seclusion, limited contact with other students, and stigma. I was intrigued by the children in these programs, but my heart also felt some pain and I realized that I didn’t fully emotionally understand the experience that I was witnessing. I wanted to distance myself. How could I fully understand this? I was just an outsider and had the belief that parenting a child like this would bring only pain. Today I have a better understanding of the parenting piece, and I hope today things are different when it comes to the educational piece, for 15 years have passed since that experience. I think, though, that I see something in this photo now – I see the unfortunate difference between policy and reality. It is one thing to talk about the rights of individuals with disabilities and cite law while sitting in the classroom or removed from the experience – but it is entirely something different to witness the acceptance and inclusion in the eyes and hearts of students and faculty when it comes to how they look at your child. I hope I get to witness this for Quinn. I hope that when I look into the eyes of her classmates and teachers that I see love and acceptance. I hope that the school values her and learns from her as much as I have. And I hope that any fieldwork students in education who happen to be in her school can clearly see something different that I did not see when I was there.

-Karyn

The Scrapbook - Photo 4

This one took me a while to do. It was more difficult to go back to. If you haven't read the other parts, here are the links - photo 1, photo 2, and photo 3.

Part 4:

The next page is one that is worn. I keep going back to this time since Quinn entered my life. The photo is of me in high school, sitting in biology class. The teacher is talking about something interesting today, about this thing called Down syndrome. Normally I am bored to tears. Unfortunately, I was an underachiever at that time – rarely interested in what I was learning. Thankfully that changes in college. But this is a lesson from high school that I have kept will me for over 20 years. It was about something of interest to me, and although I didn’t know it at the time – of great significance. This topic of Down syndrome on that day in biology class makes me think about the extended family member at the Father’s Day reunion and the children in the cafeteria in middle school. It is rooted in my early experiences. It makes me think about the stereotypical haircut, glasses, and clothes. The teacher is telling us about what causes this – how it could happen to anyone. We learn about the dreaded mental retardation. I think how scary this must be given the fact that it can strike anywhere and at anytime, when you are just expecting a little one in your life – at a time when there should be happiness. Then the teacher continues and tells us that the life expectancy of individuals with Down syndrome is 25-years-old. This has stuck with me all these years – the life expectancy is only that long! Imagine only 25 years with your child. Then there is the thought that I have gone back to so much in the time Quinn has been with me – the reason why this page is so worn – “It must be sad to have a child like that.” Denial and egocentrism sets in, “Never mind, that won’t ever happen to me anyway.” I move on off that thought and into my own world again. How foolish I was. How many high school students today think the same way, only to fast forward in time and now learn that yes it will be you? Although this isn’t logical, I do believe that Quinn was my fate. But now looking back on this lesson in biology class, I know that times have changed. The teacher didn’t tell us that the reason why the life expectancy was so low was because the medical profession didn’t think it was worth their time to provide needed treatment to this population. They were mentally retarded after all, so why bother. Sad, but it was the thought of the time. The teacher didn’t tell us about institutionalization, forced experimental treatments, and other mistreatment that this population had to endure. No, the lesson was missing important information. But now I have a better teacher than I ever did in high school. I have a teacher that I am learning so much more from – the truth, the facts, the good, along with the bad. I have Quinn. And for this I am thankful. If all I ever knew about Down syndrome was from that biology class that day in high school, what kind of person would I be? I don’t even want to know.

-Karyn

Touched

Last night I was feeling down after discovering the whole story of Hasbeeb Chishty and Denton State School (posted here). I just felt discouraged, like there is so much to fight against. So to escape these sad, frustrating thoughts, I was holding Quinn. I was looking at her beautiful skin, beautiful face, loving her, when I started thinking about how I saved her. I don't mean to sound narcissistic - please don't take it that way, what I am meaning is that with a prenatal diagnosis I could have terminated and didn't. So it was because of my decision, my choice, that she is here. This comes in my mind now and again, and may be the usual experience of those who had a prenatal diagnosis. I never contemplated termination at any time prenatally - I just knew that my girl had to be a part of my life. Thinking about the above made me realize that I have already done something to help - I have this little girl who exists and will bring awareness and advocacy to those who meet her. I didn't feel so hopeless.

Just as I was thinking about the above, Quinn looks up at me. It is hard to describe what it is like when she looks at you in the eyes. Both of your eyes meet, and it is a very intense feeling. I feel like she is looking into my soul. She then grabs my face with both hands and kisses me on the lips. She does this twice. In that moment, I felt peace, love, and the presence of something bigger than Quinn and I. I thought about how some people call individuals with Down syndrome angels. They believe they have a higher connection with God. I'm not sure if I necessarily believe that. But I do believe that what happened last night was for a purpose. It was to let me know that I did the right thing - I am doing the right thing. I was touched. I had tears in my eyes and it was a beautiful feeling.

-Karyn

The Moment

Everyone seems to have at least one moment in their life where they are tested – where they have a choice in what they do, how they respond, and how they cope with something they believe is unfair that they were handed or dealt. It is through their actions at this point that they determine on which path their life will progress. It is also through this response to the stressor that they have the opportunity to show their character and level of integrity. These involve difficult moments in their life where they maybe want to give up, but can choose to still persevere. How you respond shows your power and your choice. I am lucky because the moment for me is clear. What is your moment?

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

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