What is Achievement Anyway?

This is just my thoughts...my opinions...this is in no way meant to translate to others...we are all on a journey...an individual journey and this is where I am right here and now...

In Jonathan Mooney's book The Short Bus he interviews a mother of a young woman with DS (Katie). I love this book. It opened to my eyes to that disability is another area of diversity. This is a point that I needed to look at because it challenged my values. Anyway, Katie's mom stated, "Katie revealed my dark side. She was a little crack of light that go in there and revealed my dark side. It is a dark side that most of us have." I had a dark side. I am not ashamed to say that. Quinn revealed it. She continues to reveal it.

What I hope beyond anything is that my children do something great in this world. I used to believe it had to do with what they achieve. I have a Ph.D. I was a gifted student. I had a 4.0 all through college - undergraduate and graduate. It is all about achievement in my life. Achievement, achievement, achievement.... Now I know that achievement isn't everything. Quinn, just at three years old, has shown more purpose and impact on others than I ever have and I work in a helping profession. What is worth anyway? Jonathan Mooney examined this for himself in the Short Bus. I examine it through Quinn. Right now I realize that Quinn has more worth than me. I don't care about what society values, I care about what I value in my heart. Society didn't value various races in the past. They were wrong. Maybe there will be a new way of looking at cognitive disabilities in the future - who knows. I can hope, can't I? Quinn has the DSM-IV-TR diagnosis of Mental Retardation. So be it. I say that now fully recognizing that I still struggle with this periodically. I am on a journey. But right now I feel in my heart that one's IQ does not determine their value. I give IQ tests for a living, they are just a number. What you leave behind on this earth is what matters and Quinn will touch so many people. She will leave behind a legacy that surpasses my legacy. That is truly achievement. She will be proud. That is what it is about. I know this because I see how she already touched her brothers.

-Karyn

The Blessing of DS

This is something I posted on an online forum. The question was about if you see DS as a blessing.

To me, DS is not the worrisome thing with Quinn. I would welcome only DS, but this is not to say that someone else might not have a totally different view. She had seizures which set back her development and were much more scary to me. Although we are moving forward now, I know that these seizures have impacted her. I hate Infantile Spasms, but I don't hate DS. I love Quinn and if she has that extra chromosome in every cell of her body, so be it. But I cannot stand for seizures running through her brain. This is why it gets confusing...Quinn was at a higher risk to get Infantile Spasms because of DS. But then DS helped her treatment for Infantile Spasms become more effective. So many kids who are typical who have Infantile Spasms do not get their seizures under control. It is just so sad to hear what these kids and their parents have to go through. DS was our friend here. It helped her so much and her neurologist would talk about DS in a positive manner for her. Jeez, how is someone supposed to feel about all this? It is confusing. It put her at-risk, but then saved her. But today I went to church and I am not going to get preachy but I so understood the sermon because of all this. The sermon was about grace - sometimes grace comes in ways that aren't exactly what we wanted or expected. To me, if Quinn had to have Infantile Spasms, I am just thankful she had DS. Maybe the DS was a blessing to us. Who knows?

-Karyn

Up Syndrome

-Karyn

The Great Story

If you have a story, consider doing this...it sounds cool.

I Have a Voice

"Sometimes the perfect person for you is the one you least expect" -Unknown

My Short Bus

I have been posting off and on about Jonathan Mooney’s book “The Short Bus.” I probably have two postings (this and another one) left in me. It really was a very interesting book.

There are certain symbols that exist in our society that have certain connotations. Almost everyone recognizes these things, like the short school bus and the features of Down syndrome. They convey certain emotions. Jokes are even made about these things, like both the short bus and r-word jokes. This brings pain to some, including me. Mooney decided to drive around the US in a short bus hearing individuals’ stories because it was such a symbol. It was an important part of the experience – encountering the difficulties of the short bus again. He was yelled at during the journey – people yelled out the “r-word” because of how slow he could drive in it. He witnessed fear during the journey – a young man with Down syndrome saw Mooney’s short bus and was fearful that Mooney was going to take him away in it. While on the journey, he thought of all the ways he would destroy or abandon the short bus on the end of the journey – demonstrating his power over this representation of all the difficulties he faced during his placement in special education. All the pain, all the jokes, all the hurt. All the social stigma. But in the end, Mooney decides he can’t destroy or abandon the short bus. It started to represent all the beautiful people he met and the great experiences he had on this journey. It no longer represented pain and hurt; it represented love and acceptance amongst this group of people he met and for himself. It became a part of him.

Isn’t this what Down syndrome can be like too? At first, it is so difficult to recognize the eyebrows that touch in the middle, the crease across the hand, the flat feet, etc. You want to do away with it, and have just your child there. You experience things like hurtful words from others and feelings of fear. You hope people don’t recognize the Down syndrome, kind of like you hope no one sees you exiting the short bus. Comments like, "she doesn’t look like she has Down syndrome," can actually make you happy. You want the Down syndrome, but not your child, to go away like Mooney’s short bus. Somewhere on this journey things change. You begin to see the true beauty of it all. You look and look at that beautiful face and see the beauty in the eyebrows. And then you meet truly beautiful people you would never have known before. These are the best people you ever met in your life – they are caring, loving, accepting, and they don’t take things for granted like others you know. Then you learn so much about yourself. You are becoming more sensitive to differences, you are thinking of things in a whole different way, and you love more than you ever imagined you would love. You come to cherish what you were given. Like Mooney’s short bus, you begin to see that this is something that you can’t do without.

-Karyn

Phillip's Egg

I found this on downsyn.com (posted by Vonda - thanks, Vonda!) Happy Easter everyone! Hope you enjoy this story!

Phillip was born with Down Syndrome. He was a pleasant child....happy it seemed, but increasingly aware of the difference between himself and other children. Phillip went to Sunday school faithfully every week. He was in the third grade class with nine other 8-year olds. And Phillip, with his differences, was not readily accepted. But his teacher was sensitive to Phillip and he helped this group of eight-year olds to love each other as best they could, under the circumstances. They learned, they laughed, they played together. And they really care about one another even though eight-year olds don't say they cared about one another out loud.

But don't forget. There was an exception to all of this. Phillip was not really a part of the group. Phillip did not choose, nor did he want to be different. He just was. And that was the way things were.

His teacher had an idea for his class the Sunday after Easter. You know those things that pantyhose come in? The containers that look like great big eggs? The teacher collected ten of them. The children loved it when he brought them into the room and gave one to each child. It was a beautiful spring day, and the assignment was for each child to go outside, find a symbol for new life, put it into the egg, and bring it back to the classroom. They would then open and share their new life symbols and surprises, one by one.

It was glorious. It was confusing. It was wild. They ran all around the grounds, gathering their symbols, and returned to the classroom.

They put all the eggs on a table, and then the teacher began to open them. All the children gathered around the table. He opened one and there was a flower, and they ooh-ed and aah-ed. He opened another and there was a little butterfly. "Beautiful!" the girls all said, since it is hard for eight-year old boys to say "beautiful." He opened another and there was a rock. And as third graders will, some laughed and some said, "That's crazy! How's a rock supposed to be like new life?" But the smart little boy who put it in there spoke up: "That's mine. And I knew all of you would get flowers and buds and leaves and butterflies and stuff like that, so I got a rock because I wanted to be different. And, for me, that's new life." They all laughed.

The teacher said something about the wisdom of eight-year olds and opened the next one. There was nothing inside. The children, as eight-year olds will, said "That's not fair. That's stupid! Somebody didn't do it right."

Then the teacher felt a tug on his shirt, and he looked down. "It's mine," Phillip said. "It's mine." And the children said, "You don't ever do things right, Phillip. There's nothing there!"

"I did so do it right!" Phillip said. "I did do it right. The tomb is empty!"

There was silence, a very full silence. And for you people who don't believe in miracles, I want to tell you that one happened that day. From that time on, it was different. Phillip suddenly became a part of that group of eight-year old children. They took him in. He was set free from the tomb of his differentness.

Phillip died last summer. His family had known since the time he was born that he wouldn't live out a full life span. Many other things were wrong with his little body. And so, late last July, with an infection that most normal children could have quickly shrugged off, Phillip died.

At his memorial service, nine eight-year olds marched up to the altar, not with flowers to cover over the stark reality of death....but nine eight-year olds, along with their Sunday school teacher, marched right up to that altar, and laid on it an empty egg....an empty, old discarded pantyhose egg.

And the tomb is empty!

Will You Be Like Johnny Today?

Last night I attended a spring concert at Riley's school. Looking around the room at the little girls it got me thinking about what Quinn might be like when she is Riley's age and then older as an adult. What will she do with her life? I was feeling a little sad and uneasy - because of the uncertainty, so I went back to this video that I saw a while ago. It made me feel better. You never know what impact a person may have - and it isn't always connected to their job title, it is more connected to their character and what type of person they are. We should all inspire to be like Johnny in this story.

Use Your Voice Too

These people are using their voice, how about you?

Did You Assume?

Do you have any assumptions about Down syndrome? Maybe. Or maybe not.

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

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.

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

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.

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

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"