A Miracle

This is absolutely beautiful. Be thankful for what you have because it will forever change you and fill you full of love.



-Karyn

Superstar

After I calmed down a bit from the initial shock of the prenatal diagnosis of DS, I began to think about what it would be like to have a child with DS who was one of those superstars. You know, the ones that are higher functioning, at the top of the DS bell curve? The ones you see doing some amazing things or who become self-advocates. This was for sure going to happen to me because, let's face it, I am an overachiever and my children would be too. Nothing else could possibly happen. Right? Yeah isn't that always the way it goes when something unexpected happens to you?

I am beginning to realize that this was the initial way I coped with the diagnosis - the fantasy of a superstar. I don't blame myself for this, I think it is only natural. We have to work on our grief and change in reality in stages and I was indeed grieving the loss of the child that I thought I would have. The superstar was just the next step to help me get along. An important step actually.

I can't predict the future. Who knows if Quinny will indeed become a superstar in her own way, but let's just say she hasn't been performing on the top of that DS bell curve as of yet. For the longest period of time I didn't want to really see that, but I knew it in my heart. I would see the other beautiful superstars out there around the age of Quinny and I would look at wonder at what they were doing and then go back into denial as to where Quinny was at in comparison. Look, turn your head, and then get distracted by something else was the name of the game.

Oh the comparison game, why does it keep happening when we should know better?

But EXCITINGLY I am beginning to see that I will be ok with the idea that Quinny may not be a superstar by society's standards. I am beginning to see that it doesn't matter. I can't control that and I am thankful for what I have. She has started to do a lot more lately, which is great! And in this journey, even with (and I'd hate to admit but probably because of) the crap crap crappy IS I have learned that I love her no matter what. I wouldn't trade her with anyone, not even the cream of the crop of superstars because she is my love, my daughter, my mini me.

I salute the superstars that I see. And I salute those who wouldn't be considered superstars by society, but are superstars in the hearts and minds of their mommys and daddys. All of our children are beautiful and such gifts - all are superstars to someone. And Quinny is my love, my superstar, my everything. I love you baby girl. You always show me the way.

-Karyn

Music of Opportunity & Sound of Potential

Here is the story of Patrick Henry Hughes. It is very inspiring and shows that in what some people may see as disability, there is actually great ability and love.



-Karyn

Elizabeth Torres

Happiness

I have been thinking a lot about happiness since I watched the documentary Including Samuel last week. There is a part in the film (I apologize because I don't have it 100% correct here) in which a parent (maybe it was Samuel's mother - oh man, my memory this week is shot) says that the biggest thing that they had to learn about acceptance of their child who has a disability is the importance of just being grateful that they are happy, whatever that may mean. What makes your child happy can be completely different than what makes you happy.

I have my own interpretation of what happiness means to me. It also varies depending upon the moment. Right now happiness may mean a day of which I don't have to do work like grade papers, write reports, etc. Ten years ago happiness might have meant doing these things because I was just starting out in my career and wanted to be successful. I am struck by the idea that my interpretation of what happiness means - basically marriage, children, career, education, perfectionism, etc - isn't necessarily what Quinn's interpretation may be. Let's say she is lower-functioning on the DS spectrum (often a worry of mine) - maybe I have to realize that if right now happiness to her is playing with her bell and not learning to walk across the room - that is ok. Quinn's happiness doesn't have to equal mine. It is more important that she is happy and that I love her unconditionally.

On this journey I have struggled with this because let's face it, I am an overachiever, a workaholic, and a perfectionist. To me I love excelling - getting the top grade, seeing the most clients, having four jobs, doing things that others may not be able to do. Just right now I would like to take a break from reading papers and reports (oh man). I am not saying that I am better than anyone - there are plenty of things that other people do that I could not do (being a stay-at-home mom for one - I just think that would be VERY difficult for me - it would not be a pretty picture and I would suck at it). It is just that Quinn is teaching me to re-think what I think happiness is and be open to different interpretations.

By the way, I recommend Including Samuel - it is a great film!

-Karyn

Anita

-Karyn

Placing Politics Aside

I didn't get a chance to watch the Sarah Palin interview on 20/20 on Friday night. I came home from work and just crashed because of the very long work week. I did get to watch it on youtube though. You can check it out there if you didn't see the interview. Out of protest for the repeated violation of person-first language, I am not going to link it here. Check it out if you want, it was pretty easy to find. I would just think that professional people in the television industry would be more conscientious about using person-first language. Oops I forgot that individuals with disabilities are discriminated against every day and they don't often get the same press and voice as other minority groups do - silly me, just how could I forget (sarcasm dripping from my fingertips as I write this).

I have mixed feelings about Palin. Even though we aren't on the same side of the fence politically, she is a kindred spirit on this journey. I always have to see whatever she has going related to her son, Trig. She is another mother who received a prenatal diagnosis just like me and because of that there is some connection or interest there. I don't expect those who don't have a child with DS to get it - how can I be drawn in this way to someone who is so politically different than me? It is just that you gravitate towards the stories of those who have something in common with your experience. This tells you that you are not alone - something I battle all the time.

Anyway, I found the article (link is below) very interesting. This story - the story of her son's diagnosis and birth was very interesting. Check it out HERE...

Here is a quote from the story and her book:

"God knew me: I was busy. Got to go-go-go. I’d always yapped about how lucky I was that my kids were all healthy over-achievers, self-sufficient. Now, I thought, I’ve got a tough job and other kids who need me. I just couldn’t imagine how I could add a baby with special needs and make it all work.

Unless He knows me better than I know myself, I thought a bit dismissively, God won’t give me a special-needs child."

Drat...she had to ruin it at the end with the violation of person-first language. But I forgive that because the message here in this part is something I can SOOOOOOOOO relate to.

Ok politically I am different from Palin, but I recognize that she is like me in this significant way. She has found strength from having a child with a disability. And for this, I honor her today.

-Karyn

Confessions

I promised Riley I wouldn't go into all the details on my blog, but every other day lately he has come along with a confession about himself for either myself or his daddy. Not sure what inspired all of this - especially since some of these confessions date back to the age of three (he is eight now). But as a parent, one could look at this in a positive manner - it means he is honest and will have guilt if he does something someday that is wrong. In addition, it also means that he is responsible and I know he will watch over Quinn (and not spend up her money) if we aren't around. That is all reassuring.

Anyway, Riley's ongoing confessions made me think about how when one becomes honest about something, it can be all so freeing. After the first confession (which was quite interesting), he felt that he could tell us anything. And so he has continued. And continued. He has even started sharing his current dreams for possible dream interpretation. I have seen this trend at work too. When a client starts opening up and trusting that they can share certain things with me, pretty soon they share all kind of things. It is a release. It becomes therapeutic to not only be open with others, but mainly yourself.

Quinn has done this for me. Before Quinn I would never have admitted certain things about myself - my life. I would under most circumstances and places have portrayed my life as near-perfection. I certainly wouldn't have talked so openly about difficult feelings or even have had a blog like this. But the reality of this situation is that it was not perfection back then - even with two typical children, things were certainly not perfection. But Quinn helped me become honest about this. I wonder how many people with typical families don't share their fears, concerns, feelings because of the drive for perfection. I know people like this. Once I "confessed" having a child with DS, it was all so freeing and the honesty flooded out like with Riley's multiple confessions. I wish this for others and am thankful for this experience. Once again the power of Quinn is apparent in my life.

-Karyn

Really Not So Funny

When the movie was released, I had of course heard about the protests and controversy surrounding Ben Stiller's Tropic Thunder. I eagerly read reviews from individuals from my online support group and often wondered what I would think about the film. I wasn't about to spend money on the movie and couldn't bring myself to sneak in there at the time, but I wanted to see for myself what this was all about - the best scenario for me was to watch it without a crowd and not pay anything directly to the movie. Well finally the film came on HBO, which we already have. I ended up watching the end first and then catching the beginning later because of scheduling and poor planning on my part. And quite honestly, it would have been torture for me to watch that movie in one sitting. Obviously I have bias about the Simple Jack stuff, but all and all I must say in my opinion I thought the film was very poor. I get that it was a satire - I just didn't find it very funny.

Four parts bothered me - the clips/portrayal of Tugg Speedman (Ben Stiller) playing Simple Jack, Speedman and Kirk Lazarus (Robert Downey Jr.) discussing going "full r-word," and two scenes related to Speedman's agent Rick "Pecker" Peck (Matthew McConaughey). It is of these two scenes that I want to speak. Speedman wants to adopt a child. Peck says to him something to effect of "Well at least you can pick yours, I am stuck with mine." And then the camera cuts to a photo of his son who appears to have a developmental disability (not DS). The second scene is at the end of the film where you see Peck and his son on a plane. They are sitting across the aisle from one another, not interacting, and his son is wearing a bib to catch drool (or at least that is what it looks like since he doesn't appear to be eating). It is obvious he has some not so positive feelings about his son. I was very disappointed in these two parts. Granted they were a very small part of the film, but they just further perpetuate a stereotype that having a child with a disability is the worst possible thing that can happen to a parent. To this scene and that view, I do have to say that I did have a choice and I choose to have Quinn. I was never stuck with her. I am blessed having her, as she has changed me in so many ways.

Having a child with a disability is not just a burden or a horrible circumstance to endure, as portrayed in brief moments in this film. It can be a life changing, positive, self-actualizing experience. Just yesterday I saw an old student of mine that I hadn't seen since pre-Quinn days. It was so nice to catch up with her. I was talking to her about a psychopathology course that I was teaching this fall. I told her how I am having the students read The Short Bus by Jonathan Mooney because in addition to learning about diagnoses, I want them to learn about sensitivity. What good is one without the other? We need to include both in such a course. She looked at me and said something to the effect that she can see that Quinn has impacted me for the better. There was something beautiful in her eyes at that moment, like she really saw this in me and respected the blessing of that and of this little girl. I felt peace in my heart knowing that this little girl will have an impact on so many future clinicians in the field (that is, if the students listen to me). I am not stuck with her - I was made better by her.

The options in this journey is to either let the experience destroy you/turn you into someone you aren't proud of (Peck's option) OR use it to better yourself, to learn, to experience a whole new world. I choose Quinn and the latter.

-Karyn

Advanced Maternal Age

Advanced Maternal Age. Now that is a set of words that makes you feel like jumping for joy (sarcasm). The societal assumption of youth just seeps through. After Quinn’s birth, I received some paperwork from the perinatologist. I wanted the karotype and ended up getting some additional papers. In these papers I was “diagnosed” with Advanced Maternal Age. I was 35 years-old. I started to wonder that if little "young" me is advanced, what did they say a few years back about that pregnant woman in her 60s? Bet they said the same thing – it has to be the official term. 35 or 60 doesn't matter, you are still considered advanced. I am used to that kind of stuff in my profession, but Quinn has taught me to see the person not just the diagnosis. I guess I might have this all wrong – I should be thinking about how “advanced” could be a compliment; at least I am not some naive youngster. I love the age I am now.

The reason why I bring this up is that I had a visitor (World of Science) on my site here and the comment suggested I post the guidelines for eligibility of pregnant women for a prenatal diagnosis. I went and explored their site and if you are interested in this topic would suggest you go here. But it was the first point “Advanced Maternal Age” that stood out to me, taking me back to what I saw on my paperwork. Getting me thinking...

Advanced Maternal Age is why I received additional testing and eventually the diagnosis. This is usually seen as age 35, but could be as low at 31. Nice huh? Whether you are advanced depends upon where you go and how they define it. Wouldn’t that be like if someone has a certain IQ, one group may see them as having a cognitive disability and another group would see them as below average? Nothing has changed about that person, just others' perception. I was Advanced Maternal Age because of who I am – nothing I could change about that, but when I had the ultrasound I guess that is what then made them realize that there was a risk for a “chromosomally abnormal fetus” – aka Quinn. I am biased, but I don’t see her as being abnormal. She is absolutely beautiful. It is all a matter of perspective. I am not some Advanced Maternal Age mom with a chromosomally abnormal child – I am a wise mother who is blessed with a beautiful beautiful little girl who has made my life infinitely better.

-Karyn

Last Night

Do you ever feel that things are meant to be? Last night I was just holding and loving Quinn and felt the largest sense of peace in my heart. Here is a random photo of her - I love Riley's look here :>)

Seven

I told myself I wasn't going to get upset about these things. But I am upset, but then I am not. I am just in a whirlwind of contradictions, more like a tornado if you will. I am well aware that I am a hypocrite tonight, and I don't like it. But then I have to be a hypocrite - I feel that is where I need to be right in this moment.

Quinn was tested today. Neal told me that the results indicated that she appears to be functioning cognitively at the seven-month level. Seven? Really? Seven? Out of a possible 20, almost 21, months of life? Wow.

I KNOW that early childhood assessments have the lowest reliability. I KNOW that these measures should never be used to predict IQ scores. I KNOW such measures should really only be used for screening purposes and to justify services. I KNOW that age-equivalent scores are very poor scores to give. Standard-scores are much better, but I KNOW that many of these early childhood measures are based on age-equivalents. I KNOW I KNOW I KNOW. Heck I teach the course on this subject. I also KNOW I said I wasn't going to let things like this get to me. But that was before I was introduced to the number seven in this context.

But then I say to myself, well at least it is seven. Seven is something. Seven is seven.

See the contradictions? Plus seven is only the rough estimate - some skills are 13 months and some skills are less. Seven is not etched in stone.

So maybe I should honor and not fight seven. Seven may not be the real number right now, but for me it signifies that this is not the first time I will be in this position. It is only the first time I will be hearing the results instead of giving the results. I might as well start getting used to this side of the table when it comes to feedback about your child's evaluation results.

So to honor the number seven, and all that I will learn about myself and others on this journey, I will share seven things I love about Quinn:

1. I love her toothy grin. She has one tooth that we call a snaggle tooth and it is the cutest thing EVER. There isn't anything like Quinn's smile.

2. I love that she is obsessed with the sign more. Obsessed. The boys knew the sign, but nobody does it as much as Quinn.

3. I love Quinn's blue eyes. I never thought I would have a beautiful girl with blue eyes. I have brown eyes.

4. I love Quinn's hair. It is long and wavy. So beautiful. She has the best hair in our whole entire family. She hates having it combed though. She fights and screams. Better get used to it girl because your hair WILL be long!

5. I love Quinn's laugh. It is the cutest little thing. The thing is though that she doesn't laugh for long, so you are always left with wanting more. Maybe that is the best part because Quinn hooks you in that way.

6. I love Quinn's wisdom. When I hold her and I worry about things, it is like she knows. She grabs my face and sometimes pulls me in and kisses me, looks into my eyes, or bites (whatever strikes her), but I always feel she is telling me something.

7. And most of all, I just LOVE QUINN. The total package. Even if it involves the number seven right now. Seven doesn't quite cut what Quinn means to me. It is infinite.

-Karyn

My Thoughts on Smile

I have been thinking a lot about the song I posted earlier, Smile (originally music by Charlie Chaplin and lyrics by John Turner and Geoffrey Parsons , recorded by Michael Jackson in the clip). If one looks at Chaplin and Jackson’s lives, one sees that things didn’t go always as planned. They had a lot of difficult moments. We all go through some kind of difficulties. And sometimes we think what we are going through is the worst possible thing. But if we persevere, we learn something about ourselves, our strength, our character, and find that things are indeed worthwhile and will be ok. I am getting better about doing this with Down syndrome. I can’t imagine not having Quinn here and if Down syndrome has to be part of my life because of Quinn, I will learn how to smile. Right now smiling is getting easier and easier.

-Karyn

For Today

At least five times this past week the topic of what Quinn is doing has come up in conversation. So what new things is Quinn doing? Is she walking? Crawling? Feeding herself? Etc. etc. etc. Ok there has been some new things - she, of course, has great posture (she loves to sit) and she doesn't just randomly fall over to lay on the floor - at least she eases herself down now. No crawling yet, but some stretching and forward sliding across the floor. She will stand by furniture if you place her there. But overall, I have very limited responses to this subject when asked because not a lot has happened.

Tonight I was thinking about this, and I vow at least for today that I don't care about these milestones. Quinn is Quinn. She is healthy. She is happy. She is here. Nothing like having a friend realize that their chid has leukemia to put these things into perspective. Isn't this what is really important? So at least today I will think this way, hopefully tomorrow and the next day I will too. But I will likely relapse in the milestone-itis. It is inevitable, but I will just go back to this post when I do. I will remind myself that Quinn will get there when she gets there. I love her no matter what. And she is happy, healthy, and here.

-Karyn

I Am Thankful

Today I am thankful for what I have. I am thankful that I have beautiful children, two handsome sons and a perfect daughter. Today I don't care that Quinn is falling behind in her motor skills - that is unimportant to me. All I care about is that she is healthy, happy, and alive. Here is a photo of my baby girl!




-Karyn

U2, Marriage, & DS – With or Without You

Neal proposed to me at a U2 concert. It was actually his first concert and he planned to propose to the song “With or Without You,” my favorite U2 song of all time. This song is founded for me in the angst of high school, how you could love something and it still can cause you pain, and I always find listening to the song very moving. Well he became very nervous at the concert because they didn’t play it until the second encore. But he still did it, and we are together and have three beautiful children today all because of it. I also think marriage is a bit like this song – you have your up and down moments, but in the end it all comes down to what is in your heart and commitment. Also in a way, I could now say that Down syndrome relates to this song. I can’t live with or without it. It is still difficult at times, but then in other ways it has changed my life in such beautiful ways. Funny how a song that brought us together now applies to the diagnosis of our little girl. Anyway, I was searching around on YouTube and found these. Enjoy!





-Karyn

Race vs. Disability

I am teaching a multicultural counseling class the next six weeks, so brace yourself for multiple postings about my deep thoughts on this subject. Hopefully they are not quite like Jack Handy's deep thoughts - although I do like those, but not for my own postings - ha ha :>). Anyway, Sue & Sue (2008) in Counseling the Culturally Diverse: Theory and Practice talk about how when the topic of race comes up there can be a tendency to shift the topic away into another diversity area such as age, gender, sexual orientation, etc. They purported that this happens given the difficult emotions that come with the topic of race (based on our history) over all other areas of diversity (which would include disability). Some of my students did share that they noticed this for themselves in their lives, that when they bring up racial differences they notice others from a different race do shift the topic away from that into another diversity area. It demonstrates one's comfort, or rather discomfort, with the topic. I shared that it may just be my bias, but I do notice that same trend with disabilities. Most of the time, people just don't want to hear about it. Even then, they certainly don't want you to go on and on about it. I think it is built on a difficult history of eugenics, unethical experimentation, victimization, institutionalization, and now termination that most people don't want to consider the topic or get too deep into discussing it. Plus it could happen to anyone - anyone could have a child with a disability - we all our vulnerable. And we certainly don't like to be reminded about our vulnerabilities. Just my thoughts on the matter - AKA Jack Handy-ish they may be. LOL. Seriously, it just goes to show how important it is to have adequate support from other parents who have a child with a disability. They may be the ones who will truly listen.

What I Wonder

Here is a video I found on youtube. It is written by a father about his son who has autism. What I like about it is that it talks about how your perspective will change (what once seemed big is now small) and how you begin to wonder about certain things. I think having a child with special needs makes a person more philosophical. And the most important part, that you may begin to truly experience unconditional love - never giving up on your child.



-Karyn

Dear Little Girl at the Swimming Pool,

Dear Little Girl at the Swimming Pool,

You look about the same age as Quinn, and wow look at all you can do! You can walk, swim, and talk. You are truly lucky and look like a big girl. But please be aware that people can be lucky too even if they don't do these things. My little girl is lucky to be here on Earth. With a 80-90% termination rate, you don't see too many people like her around, at least as many as you should be able to see. In addition, my little girl is blessed to have two older brothers who love her more than anything in the world. They have learned to be more tolerant of differences. Her mommy and daddy have learned so much from her too. I will be honest, it is difficult to see all that you can do. Part of me wanted to cry. Despite my sadness, I do want you to know I congratulate you on your accomplishments. I have been there with my boys. It is great when things come so easy. I expected that this time around too, but I am on a different path, taking a different journey. I am learning that it is even greater when you really learn what life is about too. Things don't always go as expected, and that isn't necessarily bad. You can become a better person that way. Hopefully someday somebody will tell you about Down syndrome and you will get to know about one of these truly beautiful people. I hope you have a nice time with your family while on vacation.

Sincerely,

Quinn's Mom

Value What You Have

Yesterday I was talking to someone at work. The short of it was about not getting wrapped up in mourning what you don't have, but recognizing the things you do have. I used this excerpt from Barack Obama's book as an example:



My favorite part (written about his mother) - "I think sometimes had I known she would not survive her illness, I might have written a different book. Less a meditation on the absent parent; more a celebration of the one who was a single constant in my life."

I came home and then thought about this - It rings true for me. I need to focus on the daughter I have, and not get distracted by the idea of a daughter that I didn't have. Life is too short.

-Karyn