QUINN'S CRUSADERS

How a Girl Celebrates New Year's Eve

2012-01-01T08:05:00.004-06:00

Well Quinn was really celebrating last night. We went to Dave and Buster's and then home to watch movies. She decided this was the time to torment Belvedere, our beagle. I have never seen her so motivated and strong, trying to get to him and be by him despite Belvedere's lack of reciprocal interest in this interaction. It took both Riley and myself to play defense against her with Belvedere on my lap. Riley got his glasses ripped of and the brunt of Quinn's force. How in the world has Quinny gotten so strong? Gee - it is like she is a superhero or something. One with more flexibility than any other (she can do splits over the enemy). One that is obsessed with beagle dogs and being by them. Don't let her fool you with her cuteness. She is one tough cookie. Happy New Year everyone!

-Karyn

Goodbye 2011

2011-12-31T07:46:00.002-06:00

2011 was a rough year in many respects, but thankfully not in the way of Quinn. She really grew and developed this year. Her latest thing is talking nonstop (sometimes words you can recognize and sometimes not) and playing with toys. May seem like little things to some, but it is huge to us. She says "bye ma" when I go out and about to work. To me, that is music to my ears. Last night she was looking at a book sitting RIGHT NEXT TO NEAL (0% space in between), with her socks off, and her legs crossed. She is just so cute. I am so thankful that 2011 was a good year for her. Every day I think about how lucky we are as a family to have Quinn in our lives. She is just beautiful. I hope 2012 is another great year for her.

For me, I hope that 2012 is less stressful. I am making it my goal to work on stress management. I also hope to post more next year - 2011 stunk on that front, primarily because of time management with everything going on. But writing helps me, so I have to try to start out strong next year.

Hope everyone has a great 2012!

-Karyn

What is Achievement Anyway?

2011-09-19T22:04:00.001-05:00

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

2011-09-18T17:06:00.002-05:00

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

You Say No to Her, and You Get a Hug and a Kiss

2011-09-06T21:55:00.004-05:00

I have decided that everyone needs to be like Quinn. Well, not exactly like her (we do need diversity), but like her in the following way...You tell her no. Maybe she is patting the dog a little too hard. Or maybe she is pounding her toy against the window. No matter, the point is you tell her no. She stops what she is doing. And in return to this redirection which may anger some, what does my girl do, she comes to you and gives you a big hug and the sweetest kiss. My girl is perfect. Everyone else, including me, has the disability.

-Karyn

Did You See Me in There?

2011-09-05T09:48:00.002-05:00

This summer we went on a weekend trip to Door County. Neal and I were reminiscing during the trip that the last time we were in Door County was when I was pregnant with Riley. So we were talking with the kids that the only one of them that were there before was Riley and he was in mommy in the time. To which, Aidan turns to Riley and says, "Did you see me in there when you were in there?" That guy cracks me up.

-Karyn

Up Syndrome

2011-08-31T06:09:00.002-05:00

-Karyn

The Joy of Picture Taking

2011-08-31T05:55:00.004-05:00

I would like to get a photo of all three kids together, but this is what has been happening...Quinn takes off, Aidan gets annoyed, and Riley, well he is by far the most cooperative of the bunch. Memories...

-Karyn

What's the Rush?

2011-08-30T19:47:00.003-05:00

Yes, I know it has been a while since I posted. It has been much too long. I have experienced a big adjustment period in my life this summer. I started my new job in April and then this summer I had to take vacation time at that job to work my other part-time jobs. A very long story and not the best summer of my life. But step by step things are getting better. Maybe now I can get back to blogging. At least for now. I really hope.

I was having a conversation with Aidan about the things Quinn can and cannot do. He asked about when she will be able to ride that tricycle in the garage. I said to him, "What is the rush?" Then at the meet and greet tonight at Riley's and Aidan's elementary school, one teacher asks me when Quinn will start Kindergarten and I say "Not for a while, what is the rush?"

That is my new mantra...WHAT IS THE RUSH?

People (including me) often push to do things quicker and faster and now I am wondering why does that matter? Really, what is the rush? Why can't we take a hint from DBT and be mindful and appreciative of the moment, whether it be good or not so good.

Why should I rush my daughter? She is my baby girl after all, my last born. She will hit developmental milestones whenever she is ready. I don't need to rush. I am going to be 40 this year. Turning 40 isn't bothering me, but it does make me realize I don't need to rush my little girl. I should just watch in wonder that the most beautiful girl came from me.

This also translates to other areas of my life. If I am still grieving the loss of my old job working with kids that I loved working with, what is the rush to move away from that grief? I was there 13 years after all and I was great at my job. It is ok to grieve that loss as long as I am functioning and doing what I need to in terms of my new job. I am not going to rush off of that.

If I want validation in a relationship in my life, what is the rush getting over it? Why can't I just work through my feelings at my pace?

Just why do we rush through life so much anyway? Are we rushing to something? Or away from something?

I am reminding myself it is ok not to rush. Even this adjustment this summer teaches me something. I shouldn't rush, I should try to figure out the meaning of this for me.

-Karyn

My Girl

2011-06-18T07:23:00.004-05:00

They told me that my girl had Down syndrome. I cried.
They told me that my girl had Infantile spasms. I cried.
They told me that my girl had Autism. Actually I think that was a lie, but I still cried.
Now I see all that my girl has accomplished.
Now I see my girl loving life.
Now I see my girl strutting her stuff.
Now I see my girl making jokes and chuckling like things are so funny.
Now I see my girl running to the door to greet me when I come home. She has a huge smile on her face.
All those tears just made me love her all the more.

The Creed of Babies with Down Syndrome

2011-02-27T07:36:00.001-06:00

Deep Thought

2011-02-26T17:01:00.005-06:00

What would the world be like if more people in power knew of what it was like to have a child with special needs? I am assuming our governor has two typical sons, and maybe I am wrong....but I doubt he would leave the door open in his budget repair bill to have the benefits for individuals with disabilities be able to be cut for years down the road if he knew what it was like to have a child with a disability. I read his bio online just a moment ago and nothing struck to say that he knew what it was like to have to fight for his child to get services, equal treatment, stop having seizures, be accepted in this world, all the things that one might have to do. I don't even care about the union stuff as much as I care about this issue - this impacts my daughter and how I see our society as valuing her. And this to top it all off, this topic isn't even talked about very much in the media. Talking about disabilities doesn't seem to be sexy enough for the media. Long story short, I will do what it takes to give my baby girl what she needs. Now is not the time to be a state employee, so I am leaving state service. Call that a contribution to the budget repair bill. One less person for our governor to lay off.

-Karyn

My Baby Girl

2011-01-22T07:23:00.005-06:00

My baby girl isn't a baby anymore and I regretfully admit that we have been treating her as such. We slipped into that because she doesn't do the same things as a typical three-year-old. She is behind her peers with DS too. It is what it is when it comes to her development (I accept that), but we slipped into not thinking about her as growing up. And for that I feel guilty. There is no reason she should be in a crib or a high chair anymore. Even in this photo you can tell she doesn't look like a baby, but we have been treating her as such. Time for some changes....

-Karyn

Depraved Indifference

2010-12-31T20:57:00.002-06:00

I have been away from the blog for a while. Too long. I had a hard semester in a lot of ways - teaching too many classes, taking on a lot (too much), and worried about the status of my full time job. I became just so burned out. But now I am feeling a renewal. Well sort of. I started working on some advocacy again about my full time job and issues there. I am starting to get my spirit back. I keep going back to that if the kids there were my kids, I would want someone to stand up and speak out to allow them to continue to receive the services they have been.

This clip, although it has been around a while, really speaks to me. The statement of "I suffer from depraved indifference" really fits me given that I have done little for social justice the last few months. When we hear about things, we tend to not let things affect us. That has been going on with me and I feel shame about it. I look around at my work and see so many people leaving and moving on because they don't know what will happen. I can't do that. I need to speak out. So it is time to get going on some things again. "Heroes are made because they are moved - not in their head, but in their heart." I am thankful for all the heroes that were moved when it came to disability rights. My beautiful daughter will benefit from their caring about her and others like her. I have to be moved about things too. May 2011 be a year that more of us become moved.

-Karyn

Just the Way You Are

2010-11-12T06:44:00.001-06:00

I love you Quinn, just the way you are!

-Karyn

IEPs Should Not Be Like Buying a Car

2010-10-30T20:12:00.002-05:00

Quinn has started early childhood classes. And she LOVES it!!!

The whole process setting this up sucked. We are happy that we finally got what we did; she is going to four half-days per week and then we are supplementing with private therapies, including music therapy - my girl will be a rock star - ha ha. BUT that being said, the whole process was well...I'd better not say. Let's just say I would insert a bad word greater then sucked back there. As many of you who visit here know, things have been complicated in the last year with additional diagnoses which have greatly impacted Quinn's development. This was minimized and the OFFER from the school district was two half-days a week of school. It was said that they don't do more. When we didn't immediately agree, then they still only offered three half-days a week. What is this back and forth crap, am I shopping for a new car? Then we walked out the room without signing the IEP. After I informed them that I would be getting an advocate to just make sure because her placement should be based on her individual needs and not what they tend to do in our school district, their tune completely changed. We could get whatever we wanted. Crazy, huh? I didn't even get the advocate, I just said I was going to. Kind of makes a person believe they weren't doing what they were supposed to. Anyway, we settled on four days a week versus five because then Quinn could go to just one school for all four days (if it was five, she would have to go to one school for three days and another for two).

-Karyn

Happiness and Sadness

2010-10-24T06:14:00.004-05:00

My baby girl turned three on Wednesday. Her development has been just taking off. Two weeks ago she started saying Mama, dog and all done (all done is a little joke she says a lot, when she isn't all done she says it and then smiles when we tell her she isn't all done). She has been coming up to her brothers so much more that her brother Aidan now complains that she is getting into his toys too much - ha ha. She makes more eye contact and will thread her fingers through yours. I feel like things are better and she is just so beautiful (see her three year old photos) and then on Thursday we received the results of the neuropsychological eval that claims she has autism. I say claims because the two times I witnessed Quinn crawl right up to the neuropsychologist are not mentioned in the eval. Down syndrome is referred to as Down's Syndrome throughout the eval. And I was the one who had to tell them about George Capone, who we are now going to try to see when my life calms down enough for me to pursue that. All the neuropsychologist did after I told her about George Capone is look his photo up on the web (she actually admitted that to me). Maybe I am just not accepting the inevitable, but I don't understand this. The neuropsychologist told us TWICE that she knew how we felt. The last time she said it I basically went off on her that, as a helping professional myself, I can tell her that statements like that do not help. Now I have to contact her again to tell her that I want an addendum to the report mentioning that Down's Syndrome should be Down syndrome and mentioning the crawling up to her, and correct another error in the report. There is always something... But I do have my beautiful girl and it is so great that she is more interactive. I can't believe she is becoming more interactive just now when we receive such a diagnosis. Maybe someday I will write Autistic Disorder on the side of this blog, but for right now, I cannot stomach it.

-Karyn

Evaluation Part 1

2010-09-20T06:18:00.002-05:00

The evaluation of my daughter to find out whether she has a fourth diagnosis (i.e., Autistic Disorder) – Part 1: The parent interview:

1. It would have been nice to not have to worry for an extended period of time while waiting for the appointment to start. The apology for being late was nice, but we could tell you weren’t prepared for us.

2. It is recommended to actually read the file prior to starting an evaluation, especially if you proudly note that you have collected and received the information. Knowing that Quinn is actually a girl, not a boy, would have been a nice touch when it comes to the development of rapport and showing us you actually reviewed the file material.

3. Your reaction to my profession was priceless. Yes, I am a psychologist. We do sometimes have children with special needs after all. Sorry but I don’t think I will be following through with your request for my business card so you can refer to me, for I am not comfortable with that.

4. Knowing the expert on co-occurring disorders of Down syndrome and Autistic Disorder would have been a nice touch, especially given that if you find that my daughter has Autistic Disorder I am going to double-check with this expert. I liked how you tried to be very calm with my words on this subject.

5. Don’t tell me inaccurate information on what has been “found” related to psychological testing. I doubt if there is any research to suggest what you said to me. In our field I know we prefer to give tests individually to the child without the parent in the room, but a tendency towards increased performance under these circumstances is not often the reason.

6. NEVER EVER SAY TO A CLIENT THAT YOU KNOW HOW WE FEEL. If you do indeed have a child with special needs and maybe have a hint of how I might feel, perhaps you should have self-disclosed that. However, given 1-5 above I am thinking that you do not (although I will ask that at the feedback, along with nicely telling you all the above – one psychologist to another). I don’t think you have any idea what it is like to be on the other side of the evaluation. It is actually a blessing and the most education you could possibly receive in the area of psychological evaluation. But this hasn’t been an easy road, for I am an individual who has always performed at the top of her class and then my world changed, I found out that I am an overachiever who is the mother of a child with a disability (DS). I ultimately found out though that DS, and this first diagnosis, was a blessing. It made my world a better place. Then, unfortunately, entered diagnoses 2 (IS) and 3 (Stereotypic Movement Disorder) and the possibly of 4 (Autistic Disorder) and I find with these additional three diagnoses that I only wanted my daughter to have a diagnosis of Down syndrome. I repeatedly feel robbed of the “typical” Down syndrome experience, if there is even one. I don’t think you know how that exactly feels.

But for now, I wait for part 2 of the evaluation and our results and feedback. Then I will speak my mind.

-Karyn

Another One

2010-08-27T14:25:00.001-05:00

Another insurance company said they would not insure Quinn and they know nothing more than that she has Down syndrome. Unbelievable. I just hope to God my job doesn't close or I am in deep trouble.

-Karyn

Discrimination

2010-08-27T06:27:00.003-05:00

It is quite something to look into the face of discrimination and realize that it is pointed squarely at your daughter, your love, your one and only little girl who lights up your life.

We are investigating what it would involve to take on our own health insurance in case their are changes in the future.

What we found out thus far is pitiful and shameful. Our current carrier would insure us all - minus Quinn - at a huge price. But because of changes in the law, we are lucky that in a few weeks they will begrudgedly insure our daughter at an even higher rate. Oh that is reform. AND all this is even before they know the details about her previous bill for a medication for $120,000 for the treatment of infantile spasms, so can we anticipate that the price would increase even more. It isn't much better with the other companies we looked at - and you want to bet when they see the medical concerns she has had, the price will only go up.

And I personally don't understand this health care reform because I have been to busy dealing with possible closure of my main job, Down syndrome, seizures, stereotypic movement disorder, and now a looming evaluation for pervasive developmental disorder. Plus a million and one other things.

Neal posed this question, "Well what did these insurance companies think would happen to Quinn when she became an adult, didn't they think she should be insured?" I responded, "Don't you know the answer is no. They think she should have inadequate health care because they expect she will die at an early age." It is nice to know people have such optimism for your child - the sarcasm is dripping from my finger tips.

-Karyn

Empathy

2010-08-27T06:23:00.002-05:00

The other day Aidan was having a crying fit about something that is now inconsequential. The cutest thing then happened, Quinn looked over at him and did a frownie face. At first I thought it was empathy, she was feeling for her big brother and everything - but maybe it was because his crying was bothering her. :>)

-Karyn

Local People

2010-08-25T19:54:00.004-05:00

HERE may be something of interest if you want to sign it. No pressure.

-Karyn

The Lifeguard

2010-08-25T18:23:00.003-05:00

I studied psychopathology in graduate school. Now I teach the course and regularly look to my DSM-IV-TR as I complete psychological evaluations for my private practice. I will be completely honest with myself and say that one diagnosis that I never really thought much about pre-Quinn's own diagnosis with it was 307.3 Stereotypic Movement Disorder. Now I just can't look at certain things the same way. Every time I page through my DSM I stop for a moment and look at that page. That never happened before. And then there was yesterday when I saw a lifeguard at an indoor water park that we were staying at. I know that this lifeguard in all likelihood does not have a diagnosis of Stereotypic Movement Disorder, but I couldn't help but to think of this disorder as I watched her stretch her neck back and forth in the same way that Quinn does when she is doing these movements. No other lifeguard did it quite the way she did it and it looked just like Quinn stuck in her movements. Back and forth. Stretching the neck from side to side. Over and over again. Now the lifeguard was trying to look by the side of the pool and make sure no one was needing assistance, but my daughter does these things not for a job, not for any purpose really except to perhaps stimulate herself. Some days she does this a lot, other days not so much. But I will never look at certain things the same way. I now notice things that other people do not. I think Neal and I were the only two people in that huge waterpark that looked at that lifeguard that way, thinking of our daughter. Stereotypic Movement Disorder is just one thing that has changed my life.

-Karyn

Standing by the Window

2010-08-13T06:03:00.004-05:00

When I drove up to our house last night after my typical 12 hour workday, I noticed something, or rather somebody standing by our window and looking out over the neighborhood. And this little person was not so little anymore. Miss Quinny was standing there watching the cars and people walk by and, more importantly, waiting for her mother to get the heck back home. If it wasn't for that pesky desire of wanting to avoid an accident, there would have been no way I would have turned away from watching her watching me and standing by the window. I parked the car and then like a stalker walked to the front of my house to watch her some more. I don't know why, but it just warmed my heart so much seeing her stand there watching over her universe.

-Karyn

Family Photos

2010-08-10T06:45:00.003-05:00

Happy Birthday Aidie

2010-08-02T06:02:00.004-05:00

My baby boy is turning six today. I remember his birth just like yesterday. It had all the drama consistent with Aidie - ha ha. I was watching him sleep this morning thinking where did my baby go? Here is a photo signifying just how grown up he has gotten (ha ha). Happy birthday my sweet.

-Karyn

The Couch Potato

2010-08-01T10:32:00.002-05:00

It may seem like a small thing to some, but WAY COOL is that Quinn climbs up on the couch or recliner and likes to sit back and relax. I don't know why, but that makes me feel WAY GOOD!

By the way, I would like to make a formal announcement to the world that she is NOT walking on her own yet and please REFRAIN from asking me this repeatedly. I don't know how many times I have to have the talk with people that it is best to ask a vague question like, "Is Quinn doing anything new?" versus specific skills like that and then looking shocked when you have to answer in the negative.

-Karyn

Helmut Hair & Others

2010-07-03T07:24:00.002-05:00

I have been neglecting my blog. My last post tells you why. Anyway, I wanted to share these photos of our vacation that we went on in June. Quinn and the boys are getting so big.

-Karyn

Advocacy

2010-07-02T23:07:00.003-05:00

I don't tend to talk about my work, but here it goes...

I feel honored to be able to work within the field of juvenile corrections. I truly love my profession and the population I work with. If you would have told me when I was younger that this would be the population that I would be destined to work with, I would have never ever believed you. Now after doing this line of work for almost 13 years, I simply cannot imagine ever wanting to work with any other population or in any other institution. I am just one of many people who feel this way, and I work at Ethan Allen School. Ethan Allen School (EAS) is an institution that is in jeopardy of closing all because of politics. Facts like diversity of staff, close proximity to the homes of youth, the value of face-to-face visits, and access to mental health services have all been discounted by the Administrator of the Division of Juvenile Corrections and the Juvenile Corrections Review Committee. I hope that the Governor doesn’t discount these same things, but I am unsure about this given that he appointed these individuals to their positions. I just cannot believe that we have come to the place of actually talking about closing EAS and moving all the youth to an institution a much farther distance away from their homes and the communities where the vast majority of the youth come from.

This morning I walked to one of the cottages on my way to see one of my kids. I do consider the youth placed at EAS my kids. Not the same as my children at home, but the youth at EAS are in my care during their time with us, and I take this all very seriously. They all made bad choices in order to come to EAS, but they are still boys and young men who are very capable of changing. I have spent the last 13 years studying what it takes to change, talking to the youth at EAS about this concept, hearing about their lives, and helping them through unbelievable difficulties. I have experienced tears, loss, anger, guilt, pain, happiness, and laughter. I walk to the cottage thinking about how much I actually love this place. I know it is hard to imagine loving a correctional institution, but this institution is filled full of almost 13 years of memories, people that I loved working with – both youth and staff. I walk by Draper Hall and remember so many kids I worked with over the years, there are so many that I remember what their face looks like or the sound of their voice yelling hello to me through their window. I love working with every one of them. Some are thankfully successful adults in the community. Some were lost to the streets and maybe prison. Some had a slip up as an adult and then turned themselves around. And some are now deceased, but I loved working with every single one – even the challenging ones. It was an honor, not only did I teach them, but they taught me. They made me a better person. I give it my all with every single kid to help them consider change in their lives, but I recognize that they ultimately have the power to decide their destiny. That is the way it should be.

I arrive at the cottage to talk to my youth. Every time I talk to one of my youth I just know that I am in the right line of work. I feel this is the place I am meant to be. There is nothing like seeing the look in their eyes and the turn of their heads when I ask a question that challenges them. I can see it clearly over and over – this is the population that I am meant to serve. They also know they can rely on me when they are at EAS. I will always have their best interests in mind even if they don’t agree with my response. I have a gift in creating a strong therapeutic relationship with these youth. They see I care, but they also know that I will challenge them to think about things they never considered before. I recognize that I use more challenge with the youth I work with now than ever before, and they surprisingly take it well – they want to know what I think. I do not lie to them. They know that I will do what I say I will do. They know that they are safe.

Later in the day I am honored to see the family of one of my kids. So many people make assumptions about the families of the kids I work with. I can’t read postings online anymore without anger at some of these assumptions. Not all families of kids placed in corrections are one way. There are a multitude of stories. There are, however, times when unfortunately some of these assumptions are true, but this is not always the case. People from the outside who don’t know these kids often don’t have any idea of what really exists. They see these kids as “monsters” and criminals and their families as permissive or absent. Why not place them far away, they say. They really have no empathy for this population. But I know otherwise. The family of my kid is stable, loving, sets limits and boundaries, and is highly involved in their child’s life at EAS. I witness a powerful interaction. I see tears. I see hugs. The kid hears about how his previous behavior in the community impacted his family. I ask him to turn and look at his family and see their reaction to him coming home and to forever remember this moment. I see it in his eyes that he is taking in what I am saying to him. Looking back now as I type this, I see very clearly that all of this would not have been possible if EAS was closed. His family would probably have not come to the review which would have been a substantial distance away. If they were present via teleconferencing (an option discussed by the administrator and the committee) this interaction would not have been as powerful. I have studied people who change and recognize that defining moments like these can have a lasting impact. This kid, who has great potential, may be lost to the system or the streets without this moment. I am so thankful that we had this moment because there may be countless people impacted if we did not.

I remember the families over the years that I have worked with, one after another. I remember the honor of helping them through difficult moments and losses, seeing them become closer, witnessing vulnerable moments, and looking at the kids’ faces when they see their family walk up to our building for a meeting. I remember the pride of kids I worked with being able to introduce me to their families at visits or graduation. I remember the young men with children who wanted me to hold their son or daughter. I remember the joy of surprise visits on their birthday or some other occasion. How happy the youth were that there family was able to make it out to EAS last minute for this occasion.

I think about all the Serious Juvenile Offenders (SJOs) that I have worked with, one after another. They have a special place in my heart because this is the population that I have worked with the most over the years. There offenses tend to be the most serious and many would discount their ability to change, but I know they have potential if they choose to do something different with their lives. I simply know if institutions such of ours did not exist in the State of Wisconsin, one after another SJO would be waived into adult court. The advocates trying to get rid of all juvenile correctional institutions and move to the Missouri Model do not have any idea what they will be doing to this population. I think of so many SJOs who have had such potential – that this might have been their first offense, but it is serious enough that they have to come to corrections. I feel sad knowing that they may be lost to the adult system where they have less likelihood of receiving treatment and more likelihood of being drawn into additional negative activity and experiencing violence and assault.

I cannot believe that people are actually discussing closing EAS. I tried to have my voice heard in this process, but I feel that those who are “driving” this moment don’t want to hear from people like me. They discount the years and years of knowledge that I and others have on this subject. They want to portray our institution as a place where the staff just can’t get along and where the kids are unsafe. They are discounting any evidence that is to the contrary. They don’t want to see any good at EAS. They don’t want to see that there is support amongst staff. Maybe it isn’t 100%, but you tell me what work environment has 100% of the people getting along. If another correctional institution seems like 100% of the people get along, I would be very suspicious of this portrayal. My daughter’s two Godmothers have worked at Ethan Allen School, so this alone tells you what support there is amongst the staff. I admire so many of the staff. I know a youth counselor who the kids just respect, a man who can reach the kids who have an absent father like no other person can. They see hope for their future in him, as he comes from the same city as many of them do. He always treats everyone in the institution so fair and kind. I know a teacher that the kids just adore. One after another tells me know they would not have been able to get their HSED without him. He is a team player, and he always helps me out whenever I have a need or a question. I know a social worker who advocates for her kids’ needs. The kids respect what she has to say even if it isn’t exactly what they wanted to hear. She regularly reaches out to staff in need. She has even comforted me in my most difficult personal moments. I know a nurse who consistently follows through and communicates about the needs of the kids. He always has a smile on his face when I see him. I know a superintendent who cares about our opinion. No matter who you are, youth or staff, he treats you with respect. I walk around the institution thinking how is it possible that they portrayed us like this? What is the true agenda here? The above is just a sampling of the staff – there are so many others who I have been honored to work with. I could go on and on.

Ultimately, what I worry about are the kids, my kids. Since this horrible series of highly political events have commenced, I have advocated for them. I will continue to advocate for them. This is why I am telling my story even if it doesn’t change things. I just feel my voice needs to be heard. I am not speaking out for me. I am speaking out for them. I cannot see any justification to moving the vast majority of the kids, my kids, far from home to a county that demographically is so different than their own. This just isn’t right. I just hope that those in power to make these decisions will not close EAS for the kids who have been entrusted in my care. If you are from my state, please call the Governor and speak out about this (608) 266-1212.

-Karyn

Reality Bites

2010-06-15T21:02:00.002-05:00

One thing after another, so it seems.

I am trying to enjoy a vacation at the moment when my job (AKA my passion and life's work) is in the balance and depending on all things, politicians. Risky to say the least.

Kind of reminds me of a vacation three years ago when Quinn was in my belly, a diagnosis of DS was on my mind, and my husband's loss of his job was in my heart.

But we adjusted.

Then a new diagnosis of a seizure disorder came along.

Then we adjusted and completed a $120,000 treatment.

Then yet another new diagnosis came along (Stereotypic Movement Disorder).

But we adjusted yet again.

And now waitng for this decision and questions about what will happen....

I had the dream of going into private practice if my work closes. That way I could work with a smilar population, but then reality came here back to me....

Insurance...

Quinn's medical needs...

Oh things are complicated, aren't they?

But as always, we will adjust. I am just feeling trapped between a rock and a hard place at the moment.

-Karyn

Wisconsin Natives-Please Help

2010-06-06T18:07:00.005-05:00

If you are from Wisconsin, please help get the word out - Out of 437 youth in the Department of Juvenile Corrections, 325 are from the southern counties. That is a huge percentage of youth, families, and county workers to be inconvenienced by moving the location. Please write your governor, state senator, and state representative.

http://www.google.com/hostednews/ap/article/ALeqM5hSdbz67zNVY31vVu-FE-HzRP4n4gD9G5UQGO0

The Girl I Love

2010-05-30T09:17:00.005-05:00

First, can I just say that isn't this girl the cutest?

I could look at her all day.

Here we are with things - at least the diagnoses:
1. Down syndrome - no biggie.
2. Infantile Spasms - sucky. But the good news is that there hasn't been any more seizures and her med is supposed to help prevent them now.
3. Stereotypic Movement Disorder - the jury is out on how I feel about this one, but it is very stressful to see these when you fear seizures all the time.
4. Now the neuro wants an eval by a neuropsychologist. Why you ask? Well I don't know - I wasn't at the appointment and did not have the opportunity to ask, but I have my suspicions of what he may be thinking is there PDD (Pervasive Developmental Disorder). I am basing this on the questions he asked Neal. I just don't know about whether that is something with her though. The last few days she has been so interactive. The more I watch her, the less I am convinced.

But today all of the above doesn't matter because just consider how cute cute cute my girl is. She is the best daughter a mom could have and I am blessed. Oh the power of mighty Quinn.

-Karyn

Not Part of the Cool Kids Club

2010-05-21T05:31:00.004-05:00

I was in a meeting yesterday. I am realizing that these meetings are tense for me because usually something like this happens... The topic of the meeting turned to our kids and that our kids "need" to grow up and go out on their own versus us perpetually taking care of them (one person has kids who are young adults and pretty dependant on their parents). Discussion insinuated that this is the way of life and the only way things go. I was just struck with how many assumptions are out there - thinking that this will happen for 100% of the people in the room. I don't know what the future holds. Hopefully Quinn can be independent. But maybe not. Let's be realistic, Quinn is even behind her peers with Down syndrome. She has epilepsy which is impacting her development. How can I assume anything? I need to wait and see. But at the meeting I realize that I don't fit in with the supposed "cool kids." The cool kids who think they have it all figured out. I am an outsider who has a different experience. An experience that they really don't want to hear because it scares them. It challenges their assumptions and that is just not a place they want to go. Disability is diversity and when you really start looking around you see that you can feel different in a lot of places - assumptions are everywhere. However, in this case I actually would rather not be part of the cool kids club. If I was, I would have never have gained this new perspective and I would be blind to a whole segment of life.

-Karyn

Catch Amnesia

2010-05-18T05:27:00.004-05:00

Last night I was listening to my Black Eyed Peas CD. I know they have some songs with the r-word in it (arrgghh), but what I was enjoying last night was One Tribe. I love that song. It makes me smile and boy did I need to smile. My favorite line in there is about catching amnesia and forgetting about the evil. I decided that is what I need to do when it comes to the current state of things in seizure land. I need to catch amnesia and see this...

And not the evil of seizures.

My daughter is the most beautiful little girl in the world. She is so worth whatever we have to go through to have her. And her face when she smiles is the thing that mends my heart.

-Karyn

Another Final Exam

2010-05-16T08:02:00.003-05:00

I am so tired. Emotionally tired. In a short amount of time, it will be the anniversary of the day that I received the prenatal diagnosis of Down syndrome. If I had known then what I know now, I wouldn't have had that hard of a time with that diagnosis. Here I wasted all those tears on what - something I long for now. Something I just want to have, the Down syndrome experience without any other major issues. I thought it was the end of the world, but it so wasn't. For those of you who have a prenatal or recent diagnosis of Down syndrome, please don't read our story and have fear. Down syndrome didn't do this to us. Down syndrome was the blessing. It opened up our world to a new sensitivity and understanding of others. Sure, it isn't always reciprocal - others don't always have that sensitivity or understanding - but then at least you find out about the character of others. Down syndrome is not what I hate now. Down syndrome is beautiful to me now. And so many people have just the Down syndrome experience. I guess it just wasn't in our cards.

What gets me is epilepsy, of course. Surprised - huh? Not. I don't want to learn about different types of seizures or medication. I don't want to be asked questions over and over again about these topics. It is like being given another final exam after the semester has ended and all you want to do is live it up for the Summer. No, not live it up for the Summer, but at least get some respite, some calm - take a nap at least. And most of all, not have to complete another final exam because you are totally drained. But instead you get another final exam put in front of you on your desk and people just want to know this and that answer. They are screaming at me, "Come on, Karyn, finish up the exam!" Ok they are not literally screaming, but this is my analogy and it sure feels this way. So maybe you comply and although you are tired you get that one additional final exam done. You take a breath and look away for a spilt second only to find that another one has been slapped down on your desk. I get it that people just want to know and be helpful, but these conversations are so draining for me right now. I have decided that for my sanity I have to become a D student and not answer every question. Underachievement is now my friend because I don't have the energy or knowledge right now. This is hard for an A student to admit (I went through my college - undergraduate and graduate with a 4.0). I will do this for me - it doesn't mean that I don't appreciate others' attempts to be helpful. I just need to think about myself right now in some ways. Self-care. So to do this, I might answer questions if I feel like I can or walk away from the desk and take a breather for a while.

-Karyn

Helpless

2010-05-15T06:04:00.006-05:00

Want to feel helpless? Who would? Well, guess what, I do.

The premiere helpless experience thus far - watching your daughter seizure over and over again on and off during a 15-20 minute period of time. Calling her name even though you KNOW this isn't going to do a dang thing, but you desperately want to connect so much that you do this stupidly anyway. Your heart proceeds to break into two. You feel as if these pieces have fallen onto the floor and are at your feet.

This happened to me last night.

Yes, now we know she has developed another type of seizure. Unfortunately I don't know the name of it right now because - guess what, another helpless feeling - I didn't get this information directly to be able to ask this question. Because of the craziness in my life when it comes to work, Neal took care of these appointments. I really appreciate that because I was again helpless in this regard. He, himself, heard the confirmation of seizures at the end of the day. When he called me to tell me and I told him to call back to find out the name, they were of course closing. Another helpless experience - being asked over and over again by people what type of seizure she is having and looking like a mother who doesn't know anything because you have no information on that. The reason you have no information on that is because you didn't take care of that situation yourself. What kind of mother are you? You are a helpless one. How ironic that these seizures started on Mother's Day.

Yet another helpless experience - you tell people the news and they try to say well meaning, encouraging words. I know they mean well, but statements like "things could be worse," "well at least she is starting on medication- that should take care of it," and "it is good that you caught this early" mean nothing to me. Thank you for caring, but truthfully these words are being said more for your benefit than mine. These words don't help me. They make me angry because news flash, they are yet another reminder that I am helpless. Let me elaborate, heck this is my blog, so I can. Who knows - things could get worse - I certainly didn't expect this and it is worse than before and who knows what horrible thing is around the corner. Sorry to be all doom and gloom, but none of us know what the future holds. I obviously want things to work out, but I don't KNOW that. Furthermore, starting the medication does not help stop the feeling of your heart breaking into two when you have to watch your beautiful girl have seizures, in fact it makes you feel worse. Sure, she just started on this medication, but here you are watching her have a seizure and you know she just took her medication and your inner voice screams "WHY?" in your head. With catching this early, how could we not catch this early? It is a bit noticeable that your child is doing something major when she is having a seizure like she is currently having. What we probably sucked in catching was in all types of absence seizures - just little zoning out ones - that she probably has been having. And identifying it doesn't mean you can do anything about it, hence my experience last night.

Instead of these words, I would rather you just cried with me. I would rather you just listen. I would rather just say how you feel about the situation. I would rather you just say that you don't know what to say if that is the case.

I will do what I need to do, don't worry about me. I always do what I need to do. But I just wanted to say that I feel helpless right now. I hope this treatment works. I hope I get more information. I hope in the short run the seizures stop. I am happy that I still have Quinn - that we have moments of clarity, but I fear what is around the corner. I have come to realize that Down syndrome is a blessing. That extra chromosome fills my heart full of love, compassion, and connection. It is because of Down syndrome that I have my Quinn and I would never ever change that. But epilepsy, on the other hand, is a horrific thing that is trying to take away my Quinny. It breaks my heart into two. I am trying to fight it, but deep down I know if it truly wanted to and was intent on winning, I am helpless. I long to be one of those people who has only Down syndrome in their life. But I know that is not my story. Enter stage right, epilepsy.

-Karyn

She Had One While I was Holding Her

2010-05-14T05:58:00.007-05:00

Sorry, I feel like venting this morning. AS USUAL, I have to go to work even though my world is shaken up and I am wondering what is going on. Why should this time be any different - I had to do that when we received the diagnosis of DS and when we received the diagnosis of IS. Now we are probably going to find out she is having another type of seizure. I am almost certain. I feel it in my heart. I also doubt we will get answers today, but will instead be tormented with this for a week at least. Then the "fun" part comes in and you get to watch these episodes and know that they aren't right and that right now there is absolutely nothing you can do about them. It is so painful and you feel so ineffective as a parent.

Why did these possible seizures have to start on all days, Mother's Day? I just don't get why when our world finally settles down something once again flares up. First my job situation flares up, then I get feeling a little better, and now this. I am in a why-why-why phase, sorry. I could also ask myself why I neglect my blog and then something crappy happens and I just come out of hiding. Oh well. I am a slacker.

Last night Quinn had what I believe and am almost certain must be a seizure while I was holding her. She turned her head. Her eye went strange. She was very tense. I said her name and she wasn't fully there. It is hard to describe, but I just felt like I knew it had to be another seizure. The whole thing was not right. I had this pain in my heart. This was the first time I was up close and personal with it. Otherwise the ones I have witnessed have been when she is playing or moving around.

I am sadly learning that the brain is everything. I was so foolish to worry about the heart, stomach, all these other areas. I can't believe that I neglected to think about the brain.

Please keep Quinn in your thoughts and prayers, hoping we get an answer and she can get some treatment soon.

-Karyn

If You Know About Seizures, PLEASE Read

2010-05-13T20:43:00.002-05:00

If you know about seizures, please read this in case you can answer my question...please leave a comment if you have any insight into this. I am in desperate need of information...

Quinn was dx with Infantile Spasms (IS) last year and had tx with ACTH (finished up around Christmas). Things were going well. In the last few days she has started to do something strange. It started just once a day (we noticed it on Mother's Day) and then today she did it three times in a 15 minute period. She turns her head and her eye turns and she seems dazed and stuck there for a bit. Then she is back to normal. She will be going to the doctor tomorrow, but does anyone know anything about this? Can this be another seizure disorder related to IS?

I just don't know what I will do if it is something serious again.

Thanks.

-Karyn

Motherhood

2010-05-09T06:00:00.003-05:00

I have been neglecting my blog. This semester has been hectic to say the least, but hopefully I will have more time in the Summer to post. I can really feel that I am not writing because I am feeling more stressed. Writing does help with my self care, so I better suck it up and find the time. Plus why have a blog if it is just gathering cyber dust.

As you know, today is Mother's Day. So I woke up this morning having thoughts about what it means to be a mother. I really don't know what I expected in becoming a mother going back to the time before I had that itty bitty dimple faced little baby boy named Riley. Ten years ago I was pregnant with him and didn't really realize how my life would change. I didn't occur to me to even consider what becoming a mother philosophically meant to me. Unfortunately as with most things in my life, I just kind of did it because it was the next thing to do. I had two other moments to think about what becoming a mother meant to me, but I neglected doing that as well when I was pregnant with strong feisty Aidan and my mini-me Quinny. I really didn't get the significance of all these moments and the journey I was embarking on. I kind of wish I could go back and look at this more, really think about what motherhood means to me before the moment of entering it.

Quinn has made me more philosophical. Especially the last year has made me philosophical. Sometimes you are given something unexpected and it alters how you look at the world. So maybe I needed to have Quinn, experience the unsettling feelings of an additional diagnosis of Infantile Spasms, and then I would get the idea to really look at what motherhood means to me. Maybe things come in the order that is best for us and at a time we are truly ready to look at them.

Well these are the things I know...I am not a "traditional" mother (if there is such a thing). But I will do whatever it takes to give my kids what they need. I will fight for treatment. I will sacrifice myself (working long hours when needed) to get them what they need. I cherish my moments with my kids. I have talks with the boys about what it means to be a responsible, loving person and the importance of understanding and embracing diversity. I have started taking care of myself more (yep I know I still work a lot, but I am losing weight) so I can be around longer for my kids. But I am not perfect. I am learning. I am always learning and most of the time I am learning from my kids, both at home and at work.

This past year has been a remarkable one. One of challenge with Quinn's health concerns and the development of Infantile Spasms. One of seeing more and more the reality that all children are not fortunate enough to have a mother who will protect them, guide them, and not hurt them. I have learned a lot through the stories of other people. I have also learned a lot through the story of my own little Quinny. When I was pregnant with her, I was expecting one thing and got another. Just before she turned two, I was expecting her life to progress one way and found out something different yet again. Motherhood is about learning as you go. Adapting. Learning what unconditional love really is. Sometimes embracing a difficult experience because you recognize that you forever changed because of it. Motherhood is about recognizing your need to grow and to learn and sometimes even your need to mother yourself. But it is mostly about the love you feel in your heart when you see your Riley, Aidan, and Quinn sitting side by side. You then realize that they are forever part of you and those little people have influenced you more than anyone else you know.

-Karyn

Quinn, Please Let Me Cuddle With You

2010-04-25T10:57:00.004-05:00

I get to spend some time with the kids today. Hopefully I get to hold and cuddle Miss Quinn before she rushes off, crawling around the house - that girl is on the move all the time now.

I have been thinking about just how blessed I am to have Quinn. God gave me the most precious gift possible, my Quinny. I didn't believe this when I was pregnant and we received the diagnosis, but I know this now. I know that Quinn is perfect just the way she is. I am blessed to have her as my daughter. I wish that all those with a prenatal diagnosis who are going through a scary time could know that someday your heart will overflow with love for your child.

A couple of days ago I was reading up on the blogs that I follow and I found out that a beautiful little girl, Carly, that I sometimes check in on through the cyber world had passed away. I don't know what were the circumstances, but Carly's family is in my thoughts and prayers, especially her mother because I have followed her blog postings about the love she has for her daughter. When I learned about the lost of Carly, I knew what I had to do. With tears in my eyes, I went upstairs and tried to hold Quinn, who of course only lasted about 30 seconds in my arms before she had to crawl off to her new adventure. But just that 30 seconds was worth so much. Beautiful beautiful Carly with her smile and her mother who loves her taught me so much in the beginning of my journey towards acceptance of my daughter and the thing she happens to have called Down syndrome. God bless you Carly.

I found this video today and it really shows how having a child with DS and just surround you with love. You want this feeling to last forever, but sadly it doesn't. I have to go try to cuddle with Quinn again.

-Karyn

What to Say

2010-04-10T07:48:00.002-05:00

So much to say, but then again I really have no details to give you.

For the next six weeks (probably more) I am in limbo of what will come of my career - if major changes will be made to my job which could change the direction of my work dramatically or even impact if I have a job. I really hope the "powers that be" make the right decision, but I am not confident. I could say so much more, an unbelievable amount of stuff, but yet I can't.

But on the upside I know from one of my "side jobs" that I will be ok. I could go there full-time if things don't work with this transition at work. That brings happiness in my heart - it is nice to have a plan B and to be wanted, but quite honestly even though there are a lot of politics that I don't like, I love what I do and really don't want this change thrust on me (I want to keep doing what I am doing and not have outsiders determine the direction of my career). If these changes happen, I will know that I will have to grieve a rather large loss and now I wait eternally for the word of what the decision will be. But I will adapt. Quinn has taught me to do that.

It is just a lot of pressure right now because I am the financial supporter of five people (plus one dog). I worry. I try to get my mind off of this. Then I worry again. Plus I have to perform at work and home, so I have to pull myself together in a reasonable fashion to do so. Another lesson I learned from Quinn, from when I received the diagnosis - the first one and then the second one. DS and IS consecutively.

On the up side, I have been successful in doing some things for myself. I am losing weight. A lot of it. Finally I feel healthy - well other than my aching feet from walking a lot the last few days to get some exercise in. Actually I lied, I am not REALLY doing this for myself, more for my family. People laugh when I tell them this, but I am losing weight to not die. Yeah I know that I can't totally fight death, but I can reduce the chances by not being obese. I am the financial supporter of the family, if I die where would that leave things? Plus if I died and then Neal died where would that leave the kids? More specifically where would it leave the boys in caring for Quinn and ultimately Quinn? I can't just assume that even when our kids are in adulthood, things will go fine. Things are just more complicated now than that. Oh on so many levels things are complicated. But in a world where I have very little control, I can control this aspect of my health and I will do so. Otherwise I hang on for a very emotional and tough ride which will take me who knows where. But Quinn taught me that I will be ok, so I will trust her on that.

-Karyn

Cherish the Rests

2010-04-05T09:23:00.002-05:00

Yesterday I started to think about something very important. The importance of rests in music. Our pastor helped me get this idea into my head and apply it to Quinn. Rests are the intervals of silence when it comes to music. They are very very important because without them, the song wouldn't be the same. We need rests; we need to recognize them and cherish them, otherwise the song would not be the masterpiece it is. I experience rests with Quinn all the time. These are the intervals of sameness before she acquires some new skill. I need to recognize that these rests are important and cherish them, not trying to rush to the next skill or part of the song.

-Karyn

Attack of the R-Word

2010-04-05T06:22:00.003-05:00

It happened again last week. I was sitting in a meeting of all places. Then one of my colleagues, let's loose the r-word. I look around the room. People avert their eyes, no one speaks up, and they all know I hate that word, but not a single one is going to say anything. It is up to me. So for the one millionth time I have to bring this up. I am so tired of having to always be the only one. It just comes out of nowhere and attacks you and leaves you drained and tired.

-Karyn

World Down Syndrome Day

2010-03-21T07:30:00.004-05:00

In 2007 I learned that my baby girl would have Down syndrome. I was so unsure and scared about what this would involve. I cried many tears. The last almost three years have been full of highs and lows and another diagnosis on top of the Down syndrome (Infantile Spasms). It is today, however, that I think about the Down syndrome and remember how it entered my life because of a beautiful little girl named Quinn. Quinn is the best daughter I could have wanted or asked for - she is my everything. There are points of clarity and I know that Down syndrome has made me a better person. It has taught me so much and helped me meet such beautiful people that I would not have otherwise met in the world. Today I actually celebrate Down syndrome - something I was so unsure about in 2007.

-Karyn

Wiggling Toes

2010-03-15T06:19:00.001-05:00

Quinn does the cutest thing every single day. When her shoes and sure steps are taken off, she wiggles her toes like oh, what a relief, that feels so good on my tired feet! Her feet are the cutest little things. Although I swear they don't grow :>)

-Karyn

Delay

2010-03-12T06:01:00.004-06:00

Delays are everywhere. I delay when I am going to blog. Before you know it, it has been a month. I delay taking time to relax. Before you know it, my back and neck are all tight and knotted up. My life has become a serious of putting things off while I juggle a multitude of tasks. Delays are sprinkled everywhere.

And on top of it, every day I ironically notice more delays with my baby girl.

This is not meant to be a depressing blog entry. I love Quinn more than anything and I appreciate her accomplishments and having her in my life, but I just can't help but to notice how far behind she is to her peers with DS. Life is not meant to be a race, so this idea of "far behind" is a ridiculous one, I know that, but I still see it. It just comes and strikes me out of nowhere.

I guess I was hoping for something more after the ACTH was done. I guess I was deep down hoping for leaps and bounds, but there was a spurt and then another plateau. I am thankful for what I have, but I just have been thinking about this. It is hard to explain, I am not depressed, but aware. What is, just is.

My mind has been going to that there must be something more. I am just going to come out and say this. There must be something additional to DS and IS. My mind is now going to PDD. I am numb to this as well. If it is, it is. I am not going to seek out dx in this area yet, I am just going to watch it, but let's just say I wouldn't be surprised if someone working with Quinn mentions this soon. Last night the only interaction I had with Quinn was the frownie face. It is an adorable little face she makes when she is about to get upset. So so cute. Riley and I laugh and smile. I thank God for the frownie face, but a person would like to see more when they come home and spend time with their child. But this is just beyond my control. I just have to accept if the frownie face is given to me, at least it is something and it is Quinn so it is love.

I am learning to let things go. Just take what you have. If there is a delay, just accept it. Not much you can do about it anyway. I am sure there will be other feelings that I have about this on different days, but for right now, I am just feeling this...

-Karyn

Aimee Mullins

2010-02-28T11:59:00.002-06:00

I saw this on another blog and felt I just had to post it. Such an important message...

-Karyn

Living with a Gift

2010-02-28T08:07:00.002-06:00

I love so many parts of this....

I need Quinny more than she needs me.

-Karyn

Quinny versus Belvedere

2010-02-21T08:18:00.001-06:00

This is our dog Belvedere - he is a member of our family. Quinny started a new thing the past few weeks and she likes to go after Belvedere - touching him and tackling him. He has been good about jumping away, but the poor guy is being attacked by that little girl. Maybe he has to stay on the chair like in this photo because she can't get him there.

-Karyn

Shake Up Stereotypes

2010-02-20T15:39:00.000-06:00

This is the LOVE I am Talking About

2010-02-19T18:04:00.001-06:00

I Just Want LOVE, Not Politics

2010-02-19T17:42:00.003-06:00

I have been quiet lately. A lot is going on, but I just haven't had the energy to blog until now. I have to say this though...

All I want is LOVE and not stupid politics.

I hate politics. Not as much as I hate Infantile Spasms, but still I hate politics a lot. It just gets in the way and divides when people should come together.

And now more than ever politics are interfering with my life.

I get questions about how do I feel about certain people in politics talking about the r-word. Somehow I get connected to another mother who has another beautiful child with Down syndrome who lives in a far off state. I do feel a bond with anyone who is the parent of a child with special needs (only those who have been to "Holland" knows what it is like), but that doesn't mean we are all the same. That doesn't mean I want another person's opinions and actions to be taken as my own.

I don't want Down syndrome to be associated with all this crap. I want to see beautiful images of people with Down syndrome. I want to see uplifting messages and not fighting, bickering, and carrying on.

I do hate the r-word and other insults, but I try to learn from my child and not attack people but educate them. Quinn has educated me more than anyone else in my whole life and she has done it with love, acceptance, and pushing me out of my comfort zone and not with arguments, mean comments, and hate.

I also don't watch shows like the Family Guy (it never appealed to me), and I personally do not have interest in the much talked about episode. Watching a comedic song titled "Down Syndrome Girl" doesn't really appeal to me when I have a beautiful girl who happens to have Down syndrome. That doesn't mean that I am against the episode or anything because I haven't seen it and quite personally I don't think I am in a good place right now to see something like that. I do applaud the beautiful young woman who happens to have Down syndrome who was employed by the show. I want to learn more about real people like her and see her beautiful face.

The thing I am sick and tired of is how even in our own community we get wrapped up in politics. Sides. All that.

I just hate it.

I went back to this clip today. Listen to the very first part. I think everyone needs to learn to be a little more like our kids, even me.

-Karyn

Pervasiveness

2010-02-11T05:59:00.003-06:00

Want to know how pervasive the use of the r-word is? Check out this sampling...

Please support spread the word to end the word!

-Karyn

It Is About More Than American Idol

2010-02-09T20:22:00.005-06:00

I cried. I actually cried. Tears welled up in my eyes as I learned the fate of Maddy Curtis. I felt a pain deep down in the center of my heart. I suppose some may think that I went overboard in my reaction to this young, talented girl I don't even know, but tonight was about much more than just a television program. It was about much more than American Idol. It was about acceptance for my daughter. It was about hope for her future being free from discrimination and hate.

Let me tell you about another experience this week, it might help you understand where I am coming from. I went to Target with Aidan this week. We were going along with our cart down the aisle. I could tell up ahead there was a woman with DS pushing her cart. I could just tell from behind - you tend to look for these signs when you have a child with special needs. This was the second time this week alone that I saw someone with DS. Normally I sneak glances at the individual with DS, glancing and wondering will be Quinn's future if this person is an adult, but this time was different. Instead of looking at the woman, I looked around me and took in other people's reactions. I watched the crowd around me. I saw a child watching this woman. He was walking backwards, unable to turn away from her. He had a disgusted look on his face. I saw his mother look and ignore his reaction to this woman. I saw ignorance. I saw discrimination. I saw hate. I decided right then and there that I have been approaching these types of situations entirely wrong. I will no longer steal glances at the individual with DS, I will instead watch those who think that no one is watching them. I will watch them. And I will let them see how it feels. I began staring at the child with a disgusted look on my own face until this child looked at me, noticed, and turned away. Sure, it is a child. I am an adult. Maybe it isn't nice of me, but I am tired of hate, prejudice, and discrimination. I see that this starts early. And it grows. It festers. It turns into use of words that hurt. It causes pain.

I then turned to watching Aidan. Thankfully, he saw this woman, glanced at her, and then kept on talking and going about his business. I was so proud of my baby boy in that moment. I know that Quinn has touched our lives so much. I know that my boys will be better people for having Quinn. I get Maddy Curtis' message. I feel it in my heart.

So why do I care about Maddy Curtis? Because she represented hope for me....hope that others will see the beauty and love in the faces of individuals with DS and the faces of those who love them. Her brothers would have been cheering her on in the audience. DS would have been discussed. Maybe it would have been possible for others to see some positive images of DS instead of the multitude of negative ones. She represented my hope that one less person would stare and look like that at my daughter. I am so sorry Maddy that this didn't work out for you. You just don't know how sorry I am. Thanks for sharing your story and the beauty of having someone with DS in your life. I thank you. Quinn thanks you. We all thank you. It was about so much more than a television show for us.

-Karyn

The Power of Something

2010-02-04T21:45:00.004-06:00

Imagine being stuck in nothing.

Nothing happening.

A whole lot of NOTHING.

Why is nothing happening?

That isn't all.

You are constantly reminded that you are different from even those who are different.

You hear all about the happenings of others - the things they are learning and doing - and then all you have is nothing much happening.

Reminders all the time.

The others - those with DS and those who are typical. Story after story.

You begin to feel like an outcast.

You begin to wonder why you? Why your child? Why?

But I am lucky, I realize. Because now I have something. It is a miracle and a blessing.

The power of something.

Tonight it was unbelievable. Quinn recognized me, smiled a wide smile, and quickly crawled to me.

That is something. Your child recognizing you, moving, and loving you!

This might seem small to some, but it is huge when you were stuck in the muck of nothing.

There is a power to having something happen - especially when you felt that you were destined for a whole lot of nothing.

Thank you something.

I hate seizures. But once again I am struck with what they taught me.

So ironic.

-Karyn

Jamie Fox & His Sister

2010-02-01T18:56:00.000-06:00

I so love him!

-Karyn

Dance Like Nobody's Watching

2010-02-01T06:02:00.002-06:00

It is February! Wow, where does the time go?

I finally had a little time to explore for more documentaries related to DS. I found this little gem. Please watch. I am in totally agreement with Paul's mother, I am completely different because of having Quinny.

-Karyn

Out to Lunch

2010-01-31T10:25:00.004-06:00

Sorry I haven't been blogging lately. The last two weeks have been very very hectic. Right now I am the only surviving member of my family that hasn't become ill - a little flu bug is going around our house. It doesn't seem to be lasting long, so if I get it, it shouldn't be that much of a biggie.

We finally went to take Quinn's two year old photos on Friday (delayed a few months because of IS and ACTH). I cannot wait until we get them to hand out to people and hang on the wall! I have included a sample here. There are some even better ones too, but this just gives you a taste. My girl is so beautiful I cannot believe it. I am truly blessed to have her in my life.

-Karyn

A Special Olympian

2010-01-18T16:46:00.002-06:00

This weekend we went on a little get-away with the kids to Chicago! It was a great time. A cool experience happened when we stopped at Lambs Farm on the way home. Lambs Farm is a place outside of Chicago where some adults with developmental disabilities work. We were standing in line waiting to purchase some things from the bakery, when a woman working there saw Quinn in her stroller. She said to us, "oh we have a future special Olympian here" and smiled a wide smile. She told us how great the SO is. It was a pretty cool interaction and one I will always remember.

-Karyn

Normal

2010-01-15T18:28:00.003-06:00

Ok I know I have gone on and on about my dislike for the term normal, but for once I like this one...Quinn's EEG is normal. The nurse read us a line from the report that her response to ACTH has been remarkable. I am so thankful that it worked.

-Karyn

Our Favorite

2010-01-15T05:07:00.002-06:00

Here is who we are hoping gets through in American Idol!

Also, but the way of update - Still no phone call about the EEG.

-Karyn

The Waiting Game

2010-01-14T05:45:00.003-06:00

Quinn had her follow up EEG yesterday, but they were running so far behind that Neal didn't get to meet with the doctor to go over the results (he had to go pick up the boys at school). Now we wait for a call. Of course, they didn't call yesterday - so we wait and wait and get more and more nervous by the minute. How can it be bad news when she crawls so darn fast now, right?! I can't believe how fast she goes!

-Karyn

Find Yourself

2010-01-11T06:05:00.002-06:00

I love the song in this youtube video that I just found today, so much of it speaks to my feelings with Quinn.

Brad Paisley: Find Yourself

When you find yourself
In some far off place
And it causes you to rethink some things
You start to sense that slowly
You're becoming someone else
And then you find yourself

When you make new friends in a brand new town
And you start to think about settlin' down
The things that would have been lost on you
Are now clear as a bell
And you find yourself
Yeah that's when you find yourself

Where you go through life
So sure of where you’re headin'
And you wind up lost and it's
The best thing that could have happened
‘Cause sometimes when you lose your way it's really just as well
Because you find yourself
Yeah that’s when you find yourself

When you meet the one
That you've been waitin' for
And she's everything that you want and more
You look at her and you finally start to live for some one else
And then you find yourself
That’s when you find yourself

When we go through life
So sure of where we're headin'
And we wind up lost and it's
The best thing that could have happened
‘Cause sometimes when you lose your way it's really just as well
Because you find yourself
Yeah that's when you find yourself

What a beautiful video!

-Karyn

A Miracle

2010-01-10T08:14:00.001-06:00

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

-Karyn

Superstar

2010-01-09T22:26:00.004-06:00

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

Athlete Ximena

2010-01-09T19:35:00.001-06:00

-Karyn

Quinn, You Get OUT of Your Brother's Room!?

2010-01-09T19:13:00.003-06:00

So much has changed with Quinn since she stopped the ACTH it is just remarkable. Unbelievable. A blessing. Today she actually kept going into her brother Riley's room to hang out. My little girl would travel from way out in the living room, around the corner, through the doorway and then settle into Ri's room to beat her rattle up against various belongings of his. Oh yeah, she does take her rattle with her. She moves fast - a girl who knows what she wants. Riley just laughed at this. He knows this is happiness and a blessing. We told her to get out. We tried to be serious. We brought her back to the living room, and she would travel there again and again and again. Like I said, I have a beautiful little girl who knows what she wants.

Right now I have relaxation flowing over me and happiness in my heart.

Might seem small to some, but after so long of sitting and doing nothing, this is absolutely heaven.

-Karyn

Music of Opportunity & Sound of Potential

2010-01-09T07:53:00.002-06:00

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

Athlete Andy Miyares

2010-01-08T06:26:00.001-06:00

If you have not watched this, you really need to. It is a beautiful story.

-Karyn

Beauty of Friendship

2010-01-08T06:20:00.001-06:00

I would love to walk into one big hug. How about you?

Quinny Plays the Drum...Plays the Drum

2010-01-07T20:02:00.003-06:00

We have this drum from way back - way back when Riley was a little bitty guy. Now he is half the way to adulthood (he just turned nine). Someone told me that about Riley yesterday and I was like HOLY COW - HALF THE WAY TO ADULTHOOD!!! Sorry, I digress. Anyway, this drum was Riley's toy, Aidan's toy, and then was to be Quinn's.

Up to this point, Quinn hasn't really ever played with a toy other than just using her rattles (which she loves) and accidentally here and there hitting keys on the piano (just randomly and not purposefully).

I felt stuck like will my girl ever play with these toys of her's, even the hand-me-down ones from her big brothers.

Tonight I saw a beautiful thing - my little girl was playing with the drum.

She would purposefully hit her rattle against the drum and then the song would play "everyone play the drum...play the drum." She would pause during the song and then once it was over, hit the rattle against the drum. Over and over again she would do this on purpose.

Wow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With the boys, I just took things like this for granted - what it takes to do this, to think this through and make this decision and figure out the toy. Thank you Quinny for always showing me the way and teaching me to stop and consider the beauty of the "small" stuff. Small stuff can be HUGE and worth celebrating.

-Karyn

Athlete Charles Howard

2010-01-06T20:43:00.001-06:00

Bring on the positive stories for 2010!

-Karyn

The New Elite

2010-01-05T21:18:00.002-06:00

I was listening today to someone talking about how they did not feel like they are normal. A very powerful story this person had. You could just see the power of normal.

NORMAL. A word that I never had a second thought about before now has great significance to me.

Yesterday I was eating lunch with three other women and they start talking about their lives. It doesn’t take me long to realize that I cannot relate to one thing they are saying. I am abnormal. Nope, I am not a normal woman, mom, wife, etc – I don’t say a word, fearing my abnormal ways will stigmatize me. Then the conversation turns to talking about one person’s 10-month-old grandchild, who is starting to walk. How exiting! I have been there twice before with the typical development of the boys and how smooth that all goes. Ummm…inside I ask myself, what is Quinn doing now? Well, gee she just started crawling – let’s recap, she is two YEARS old. Yep, that is not normal. Ok I really need to be quiet now because these women certainly don’t want me to say anything and upset their normal little worlds. Later I tell someone how I didn’t appreciate how a professional person left me a voicemail with the r-word in it. The person said oh they were probably just quoting what the mother said. Yep, I am not normal. I am overly sensitive.

You know what, I have realized that I really don’t want to be normal. I don’t want my daughter to be normal. I want to learn AND grow AND become more sensitive to what other people go through. I don’t want to just assume that everyone walks the same line. That is hurtful. It happens FAR too often and even amongst some people who should know better. Normal is over-rated and desiring it can make some miserable or superficial. Atypical is where it is at. I am part of the elite!

-Karyn

The Perilous Journey

2010-01-04T04:52:00.004-06:00

If you think about it, movies and books are filled with adventures like the ones I have experienced, a perilous journey of which you encounter who knows what that takes you far from the reality of what you know. Think about Wizard of Oz, a story that involves such a journey. Dorothy survives with the help of three friends who thought that they didn't have everything that society valued. However, in the end these friends really did have their own version of it and there was such value there. Doesn't that sound familiar?

We have journeys in life. It is those journeys that teach us what is important. It is those journeys that lead us back to home, family, and our relationships - what is truly important. I am blessed to have experienced such a journey. That is the positive thought for today.

-Karyn

Way to Go Reece's Rainbow

2010-01-03T08:10:00.003-06:00

Grab This Button

Wow - look at all the children helped though Reece's Rainbow this holiday season! I am drawn to this website and tend to think about what would Quinn's life be like if she was born elsewhere to another mother. I smile when I see Quinn crawl across the room surrounded by love of a family - hopefully others through Reece's Rainbow can experience the same. It is truly a blessing to have Down syndrome in your life, for it teaches you what is really important. I am so glad we sponsored Ivy through Reece's Rainbow and we pray she finds a family this year. If you didn't participate in this project this year, please do so in 2010.

-Karyn

Andrea Friedman

2010-01-02T08:50:00.001-06:00

Watch this inspiring story...

Here

-Karyn

I'm Positive About 2010

2010-01-01T20:11:00.003-06:00

The past week I have thought a lot about negativity - how it can surround us, consume us, overtake us, and ultimately destroy us if we let it. This negativity can originate from our own negative thoughts within ourselves and/or amongst the negativity of some people we may know and associate with. I have a lot of things I would like to work on this year, but they all seem to fall within this area - the need to surround myself with more positive. Positive radiating from myself and the others I choose to have in my life. This is not only for myself, but for my children - they need more positive in their lives too since our world can be overly critical. So I am on the lookout for positive people to discuss and sharing positive thoughts - this doesn't mean that I won't complain (eliminating that may be difficulty depending upon the circumstances). But I am going to be more positive in 2010. Won't you join me?

-Karyn

Bye 2009

2009-12-31T13:52:00.002-06:00

Well 2009 is almost to a close. No exciting New Year's Eve plans here other than spending an evening with the family - which is very nice and the best way to bring in 2010. To tell you the truth, even when I used to go out on New Year's Eve I never had a good time. One time I was almost stuck waiting in line for the bathroom at midnight because there was just too many people. That would be a horrible way to bring in the New Year.

So today I am thinking back on 2009. Will this be the year that all I can remember are bad things like IS, relationships tested, tears, giving your daughter shots of a very expensive drug that made her look and feel miserable?

Well these will be stuck in my mind forever I am sure, but 2009 was full of good things too...

Great support by some people in our lives - some I have met in real life and others I have not. This year really showed me the beauty of support. I have learned that close relationships should be founded in support and if you don't have that, you have nothing.

Our family vacation to South Dakota - the kids loved it and looking back on the photos I see just how beautiful inside and out my husband and kids are. In fact, we had a lot of adventures this year and we are very lucky for these opportunities.

Participating in our second Down Syndrome Awareness Walk - the DS community is full of such wonderful people and we are blessed to become a part of it. My life is better with having DS in it.

Employment - I am so lucky to have two new part-time jobs that I can be proud of and not only help others but learn so much myself. I am also so lucky to have my full-time job and my other part-time job that both provide our family with stability and much needed money. I appreciate the relationships that I have developed through both of these places. All my employment opportunities are blessings given this economy.

There are probably a lot more that I am forgetting, and I recognize that 2009 wasn't all bad. I learned a lot. But given the last few months, I am happy to start a new year and hope for nothing but good things in 2010.

Happy New Year!

-Karyn

Albert Pujols

2009-12-30T09:18:00.001-06:00

I am always on a search for positive people who have been touched by DS. Here is one!

-Karyn

Would You Rather?

2009-12-29T18:44:00.006-06:00

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

Elizabeth Torres

2009-12-27T06:41:00.001-06:00

The Best Christmas Gift

2009-12-26T07:40:00.006-06:00

This year we received the best Christmas gift ever...

We moved past this...

To this...

And this...

The best possible gifts!

-Karyn

From Something Terrifying Comes Great Joy

2009-12-24T22:09:00.003-06:00

We went to my parents this afternoon for that side of the family's Christmas celebration. Then after a long drive back we went to church and opened up gifts here at home. We have to go to Neal's parents tomorrow (another long drive), so it was so nice have a quiet night home after church. Everyone put on their new PJs and we just all relaxed. Something I needed. Something we all needed. Quinny crawled around and played as we opened gifts. It was just so nice. What a Christmas blessing that is.

The sermon tonight was about Jesus' birth (of course). Our minister talked about how so much joy came out of such a terrifying time. The terrifying part was King Herod's threat to kill off all the newborn babies. I started to think about this journey that we are on. First we were terrified about the diagnosis of Down syndrome. But out of that came the great joy of Quinn. Had I known then what I know now, I wouldn't have been so afraid - but what can you do about that. Then came the terrifying journey of Infantile Spasms. But now we have the joy of seeing Quinny crawl and do new things every day. Since the treatment, something is now different with her, she is so much more active and purposeful in what she is trying to do. It is a joy to see.

Had it not been for these two things (DS and IS), I would have really not have understood the sermon tonight. So I do appreciate the better understanding I have, but for the record - I still hate IS. DS isn't that big of a deal to me and has actually become my friend.

-Karyn

Happy Birthday Neal!

2009-12-24T08:16:00.003-06:00

Neal, HAPPY BIRTHDAY! You deserve a great birthday for all you do. You are loved and we appreciate you!

Here is our version of a birthday song for you :>)

-Karyn

Nothing Like the Sound of Quinny in the Morning

2009-12-22T06:57:00.003-06:00

As I am typing this, I hear Quinny in her crib two floors up - clear as day. She is babbling. It is the cutest little sound to hear. She has been doing great. She is moving around so much lately - all around the living room and even into the kitchen. We actually have to shut the door to the stairway to the basement because she is so mobile. I honestly never thought this day would come. She is working on her crawling and getting stronger and closer to getting the hang of it each day. I saw her go a little ways to get her FAVORITE toy. Again, I honestly never thought this day would come. I am beginning to realize how much the seizures did impact her and now that they are gone how she is doing so much better. Things seem to be coming together for her lately. She loves it when we sing to her and when I start row-row-row your boat, she grabs my hands to do the back and forth thing - happiness!!!!!

The boys are gearing up for Christmas and I haven't even started my own shopping. Luckily Neal took care of the kids. This has been the most hectic year of my life. I am on vacation from my full-time job this and next week and wouldn't you know five of the ten days have gotten eaten up with work from two of my part-time jobs. Oh well, at least that is progress - I am not working the 70 hour week I usually do. I guess things aren't going so smooth for me because twice in the last week medical professions (my ob/gyn and chiropractor) tried to have a serious talk with me about when am I going to take some time for myself and slow down. I must not be a spring chicken anymore - ha ha - so I guess that is a sign that I have to maybe drop some weight and take better care of myself. That would help. Oh but to find the energy to get on the treadmill after working 14 hours - that is another thing.

-Karyn

My Girlfriend's Back

2009-12-19T08:40:00.004-06:00

You know that song My Boyfriend's Back. It has been playing in my head the last two days...

Because my girlfriend is back! She is back to herself minus the fog of seizures.

Knocking on wood that this stays because it is such a great feeling!

It has been such a long time since I saw the spark of my girlfriend.

She went away.

And she was gone for such a long time.

But now she is back and things will be fine.

She is strong.

It is time that seizures take a PERMANENT VACATION!

One more shot of ACTH and she is done!

-Karyn

Happy Birthday Ri Ri!

2009-12-13T07:54:00.003-06:00

Today Riley turns nine!! Happy birthday to my first baby boy. I know I can be strict and hard on you sometimes, but it is all because I want you to turn out to be the great man that you can be. Everyone always says what a great kid you are - so smart and caring. I am proud of you and the boy you are becoming. Have a great time at your roller skating party.

Here is a story that I wrote about you two years ago:
My Rock, Riley

The other day I wasn’t feeling well, something that is out of the ordinary since in the craziness that I call my life I have little time for such things. I was sitting on the recliner in the living room and Riley, my then seven year old son, came over, said nothing, but laid his hand across my back. This moment encapsulates what Riley is. He is a loving, caring child, who is sensitive to the needs of others. This is not to say that he is a saint, oh believe me, he has his moments, especially with his younger brother, Aidan, but overall he is the most loving child you will ever see. You see, Riley wanted me to write stories about our family. He loves these stories, but he wanted me to write Quinn’s and Aidan’s stories first. Riley wants to give to others. He is my rock. And now it is the time for me to tell him what he means to me, his mommy.

Riley entered my world on December 13, 2000 after my water broke at 5 in the morning. We weren’t prepared, running around the house, all because he came three weeks early. Riley is always looking out for me though, as he was by far my easiest birth experience. Imagine your first child being so easy. He came at 4:35pm 7 pounds, 7.5 ounces and 20 inches long. He had it all, including hair and a dimple. Neal was so proud to have a son – I was just proud to finally have my Riley here and to not have the nightmare of labor that everyone always talks about. Riley was a very good baby – again looking out for us. He slept through the night at eight weeks old. He was easy to get off of bottles, to potty train, to do anything. But there was one moment…I remember the day when Riley had to be around six months old. He had not slept all day. Around dinner time Neal and I started getting frantic – we would rock him, put him in the swing, even driving around town with him. Nothing worked. Then all of the sudden he let out the BIGGEST burp imaginable and immediately slumped over. A memory sealed in my mind. Looking at him now, I see that same little baby deep down inside of him.

Other memories of Riley. Around three years old he started talking a lot about his eyes. Something that he probably heard from the teachers at school – his big brown eyes, where did he get those? I had heard the same thing when I was a kid. We talked about how he got those eyes from me. And before me, his grandpa Robert. Later when he was four, he told me that after I die, all he has to do is look in the mirror and he will see me in his eyes. I cannot tell you how much that filled my heart with happiness. He gets it. He gets that I am always with him, even when I am not physically present.

At three is when Riley also learned he was going to be a big brother. So proud he was. He wanted a little brother. He was elated when the ultrasound showed it was a boy. He was so happy the day his little brother Aidan arrived. We have a photo of him proudly holding Aidan. The next day, he had to take that photo to preschool. He was the one who first called Aidan “Aidie.” Now Aidan refers to himself as that – Riley has had a big impact on our family. You can tell that Aidan really admires Riley when they aren’t fighting as boys do.

Speaking of photos, Riley loves photos. He loves memories; he loves history. He was the reason I started these stories. He would ask me to tell him this story and that, why not write them down? He loves looking at photo albums. He has used photos to show that he is proud (with Aidan’s birth) and to help him through rough times (carrying one of his dog, Festivus, when he died and then becoming upset when he lost it on a field trip). Riley loves history – he wants to know about this and that. I remember once when he asked about slavery. He talked about how that wasn’t right and how he is going to be better than that to people who are different from him. My Riley is going to be an awesome man some day!

When he was almost four, he started talking about getting a guitar and becoming a rock star – this is an aspiration that he holds even now, three years later. He started guitar lessons at age four, and has written over eight songs. He has recorded some of them with his guitar instructor. Riley is so creative. He loves to compose, write, and create art. He is a sensitive artist through and through.
I remember driving in the car and talking to Riley when he was four years old about the various ways to handle teasing or bullies. He would talk about what is right. At home when he would get upset, he would take his own break, or “time out.” He is a psychologist’s dream kid. I am so proud of him, although I must admit that some of his songs are about his mommy yelling (not very good for a psychologist is it?). Riley sometimes gives me a reality check. I had to cut back on the yelling. Now his songs are mostly about school.

In the first grade, we are told by Riley’s teacher that he is helpful, caring, and makes a good choice in friends. He will try to mediate disagreements between friends. He will share. He is a little shy at times, but watches and notes what others are up to. Riley sees everything, hears everything. Just when you think he isn’t listening, he is. He wants to know what is going on. He loves to learn. His reading is taking off, his writing is awesome, and he loves math (just counting his money alone is a joy for him). He saves things. He is very responsible.

When I was pregnant with Riley’s little sister, Quinn, he was so excited. He said he wanted a little sister because if he had another brother like Aidan, things would be too wild around the house. That made us smile. There is Riley, always looking out for us and the furniture. Well he once again got his wish. When I found out prenatally that Quinn had Down syndrome, Riley was once again my rock. He told me that it doesn’t matter, that she will go on to do great things, that everyone has things that are difficult, after all. When I would go on to the internet to look at photos of families with children with Down syndrome or when we would meet local families, Riley always talked about how the kids were so cute or would move around so fast. When Quinn arrived, Riley just LOVED HER. He would hold, hug, and kiss her over and over again. This hasn’t stopped. Riley talks about how he will help her, but not too much because she has to learn to do things on her own. He also talks about how he will help her when he is an adult, when we are gone. It is remarkable all that Riley understands. He knows we need him.

So when I say that Riley is my rock, I mean a lot of things. Riley has brought so much joy to my life. Riley illustrates the best of me. Riley has said the most remarkable things when I needed to hear them, or has laid his hand on me when I needed him the most. Riley is also my “rocker,” my rock musician. He often says that he wants to “rock.” Right now as I am writing this, I hear him on the keyboard. My heart is filled with pride. If Riley decides to become a rock musician someday, that would be great. If he doesn’t, he will forever have at least one number one fan that will enjoy his accomplishments no matter what they are, his mommy.

-Karyn

Four More Shots

2009-12-13T07:42:00.002-06:00

After today Quinn has four more shots! We are moving into the home stretch. I am so appreciative to be here right at this moment because, quite honestly, we were through hell and back.

The only problem now is that I am paranoid about seizures. I am on high lookout when with Quinn for anything that might be interpreted as a seizure. I haven't seen anything, but it is nerve wrecking to be watching and thinking about it. How long with this last? Hopefully not so long - at some point I would think that I can let go of this.

Oh and Quinn's poor legs. It makes me sad to see the state of her legs - the result of eight weeks of injections. I hope she heals fast, so that reminder is no longer.

But for anyone going through this horrible experience of IS and ACTH - just know that it can be over at some point. We are getting a fantastic present just before Christmas!

-Karyn

Happiness

2009-12-12T12:12:00.002-06:00

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

Santa's Karyotype

2009-12-09T06:02:00.002-06:00

My Reedemer

2009-12-08T06:07:00.002-06:00

This has been quite a journey with IS and Quinn. We are getting closer to the finish line (hopefully). Someone shared this clip on a forum that I go to. It is absolutely beautiful. It just goes to show that parents of children with disabilities know unconditional love and commitment so well. We go any distance for our children.

-Karyn

Quinny Girly Update

2009-12-07T21:47:00.003-06:00

Now she has an ear infection - so while she has been on ACTH she has had thrush, a bacterial infection, an ear infection, two high glucose urine tests, a positive blood in the poop test, a puffy face, a huge belly, disrupted sleep, and four weeks of being angry, crying and doing nothing. Maybe I should make a 12 days of Christmas song, but make it the 8 weeks of ACTH. It may become a number one hit - ha ha! That would be fun to do it I was feeling creative tonight and not so darn tired. If someone steals my idea, I want credit!

We will be GREATLY happy when she is done with it - TWO WEEKS FROM TODAY!!!!!!!!!!!

-Karyn

Happy Holidays

2009-12-07T21:38:00.003-06:00

December 7, 2009

"How do we value life? Count all the fingers and toes. Look at the head and make sure it looks like every other kid's head. Think about the brain; make sure it will work like everyone else's. Is the value of life just the sum of its parts?" (Mooney, 2007, p. 191).

This year our letter is going to differ from the past. It is all about how we measure what is valuable in this world. Sometimes it is in the things that everyone else considers a nightmare that you find the most value. A lot typical stuff happened this year – vacation, work, play, volunteer activities, and laughter – but it just seems that we can only focus on the last few months, which teaches us this lesson.

Our world was turned upside down in October when Quinn received a diagnosis of Infantile Spasms (West Syndrome). Don’t let the term spasms fool you – this is a very serious seizure disorder. Lucky for Quinn she has Down syndrome! We bet many people in the world would be shocked that this is something to feel lucky about, but it truly is. Down syndrome can help Quinn’s prognosis and response to treatment. That extra 21st chromosome has helped us in a lot of ways, this being one of them. October was left with two hospital stays, learning how to inject our beautiful daughter with medication that costs $30,000 a vial, and a little hospital station being constructed in the corner of our living room. November was left with a child who would not take naps, who was screaming and crying in pain from the medication, who wouldn’t play, who wanted to be held constantly, and who started, slowly to get better! Once again we are thankful for these things. What? How can one be thankful for the bad? It is because it is through the bad that we truly realized how blessed we are. It isn’t until your child doesn’t smile or interact anymore that you see what an actual blessing even a smile is. Sadly, it sometimes takes things like that to make you realize just what you had. We are happy to say that Quinn’s smile has come back and we will never take it for granted again. For December, we are looking forward to witnessing Quinn get back to her old self as her medication tapers off. We optimistically hope that she stays seizure-free after her medication ceases on December 21; that would be the best Christmas present we could receive. Quinn has taught us so much, and we are lucky to have her in our lives. Going back to Mooney’s quote above, it is not through the sum of her parts that we find her true value; it is through Quinn in totality that we see the greatest value possible.

It was a blessing to hear our boys bicker and fight this year. What, fighting is a blessing? Yes! It shows that Riley and Aidan are healthy, opinionated, and strong. They have kept each other busy and occupied during the last few months. Sure, they don’t always get along – but they are brothers! They fight, get it over with, admit to what they did, are honest with one another, will forgive each other, and then welcome one another back with open arms. There is a lot to be learned from that series of events. They have handled the situation with Quinn with such grace, understanding, and love. They both love school (Riley is in the 3rd grade and Aidan is in Kindergarten). They love sports (soccer and baseball for Riley and t-ball for Aidan) and video games. Aidan still talks about marrying mom. Riley still loves to learn more than anything else. The boys made us laugh and smile so much this year! They also made us forget about things that were worrying us, especially when we had to break up a fight. We are blessed to have our beautiful sons in our lives. Again, their true value is not in the sum of their parts – it is much more than that, they give us so much.

It was a blessing that Neal was laid off of work a few years ago. Again, most people may think why would we consider this a blessing, but it is really Neal that helped Quinn get through all of this – he was in charge of the injections (every daddy’s dream, right?), he took her to the doctor countless times, still tried to carry on with therapy despite her mood, and, most importantly, held and loved her. He juggled all this with spending time with the boys, taking care of the house, and keeping his position as Head Trustee at church. Sure, everything wasn’t perfect – sometimes things were missed – but considering all that he had on his mind and on his plate, Neal did a pretty stellar job. Karyn helped as much as she could while juggling many things too, such as continuing to work four jobs (relax, only one is full-time). We both became experts in multitasking. Again, we didn’t do everything perfectly, but we did the best we could and appreciate the understanding, help, and encouragement from those who love us.

We aren’t saying that every time people can find something good in something bad – sometimes it may be very difficult and/or impossible; our hearts and prayers go out to those of you that have gone through something especially difficult this year. In addition, our story isn’t about hiding from your difficult moments and feelings of anger, sadness, and fear – our life is not picture perfect and we had our fair share of this in 2009 (not sure if you would want to read that letter). But the one thing you learn on this journey is the love and support you do have in your life. It will test some relationships and enrich some others, but in the end the important part is that you see the beauty in how some offer the greatest support to you. There is nothing like being built up and supported when times are tough. This support is what has gotten us through. Little things like a hug, a card, an email, or a favor. Support doesn’t have to be fancy; it just has to be present and full of love. We hope that everyone feels the blessings of support, love, and acceptance in 2010.

We wish you a very Merry Christmas and Happy New Year!

Peace,

Neal, Karyn, Riley, Aidan, and Quinn

Searching For...

2009-12-05T20:46:00.002-06:00

...Karyn.

...Quinny.

...(Insert - your name).

What would it be like if you went across the US on a quest to find out what were the lives of all the individuals with your name. This is what Angela Shelton does in Searching for Angela Shelton. She looks at women in the US named Angela Shelton.

It is a very powerful documentary.

One that speaks to the impact of violence. Angela Shelton found that 24 of the 40 Angela Sheltons she speaks to are the survivors of rape, childhood sexual abuse, and/or domestic violence.

Wow.

If you haven't seen this film, I highly recommend that you watch it. Get out the tissues and be ready for a very intense experience. Angela Shelton even tries to confront her abuser - her father - in the film. Wow.

But there is more that I want you to think about...I understand this may be an overload of information, but it is important to me (and since I mainly write this blog for myself anyway, I am going to say it)...

Individuals with disabilities are abused more than individuals without disabilities. What about the Angela Shelton's who have a disability - how would they fair? The clear percentage of risk of abuse for those with disabilities is not known given the difficulty studying this area - but it ranges from 22% to 70% will experience some form of maltreatment. One in three children with an identified disability for which they receive special education services are victims of some type of maltreatment compared to one in ten children who are non disabled. Individuals with developmental disabilities are 4 to 10 more times as likely to be victims of crime than others without disabilities.

Why do I share this? To freak myself out? Ok that is happening, but there is another reason. I want someone to be their voice. I want someone to be the Angela Shelton of them. I love to find out about advocates in this area - and if anyone knows of anyone who has talked about this issue or has made a film about it - please let me know!

In the meantime, here is the trailer for Angela Shelton. It is an excellent film.

-Karyn

Mr. Blue Sky

2009-12-05T20:09:00.004-06:00

Recently I ordered some movies on the internet. Mr. Blue Sky is a movie I have heard about some time ago, but finally purchased and watched. Tears flowed. Not sad tears, but the movie did impact me because it speaks about two worries I have -

1. How will Quinn be perceived by society? (AKA the fear about whether she experience a lot of discrimination)

2. And will she be able to find someone to love?

Women have made great strides in the world. There is still a ways to go, I know because I am an nontraditional woman myself. My friend Wendy started a blog about women's issues and I am proud of her (check it out - it is under my blogs). But imagine your daughter as not facing only bias because she is a woman, but also facing more hurtful discrimination surrounding a disability of which many others can see and have historically shown a great bias towards. It is the latter part that is on my mind - because let's face it, the world has been and is currently cruel in a lot of ways towards those who don't meet the standards of "normal." The fact remains that the majority of women in the US who receive a prenatal diagnosis of DS in their child go on to abort that child because of the diagnosis - so what does this say about the value others see in someone like my child? I am not talking about pro life or pro choice here - I am talking about the fact that planned pregnancies are terminated solely because of a diagnosis of DS and individuals not wanting to raise such a child. That is a difficult thing to swallow when you look at your little girl and know that is happening. Yes, I know it really shouldn't matter what society thinks when my family obviously sees infinite value in Quinn, but still it is something she has to deal with as she ages and ultimately becomes a young woman. And if it impacts her, it impacts me.

Back to Mr. Blue Sky - this film speaks about these issues in the story of a girl with DS struggling to find acceptance, love, and inclusion in society. It wasn't an Oscar performance of a movie, but it was an excellent film. Ashley Wolfe and all the actors with DS were beautiful. If you haven't seen it, check it out...

-Karyn

Disrupted Sleep

2009-12-04T06:01:00.002-06:00

Quinn has been interacting and playing more as the medication tappers, but the last three nights she has decided to have a party at night with her daddy as her main invited guest. She wakes up and then last night I heard her playing like crazy with her rattles. At 3 AM. Her daddy is awesome with going with the flow on this, as it is impacting him the most.

-Karyn

Anita

2009-12-04T06:00:00.000-06:00

-Karyn

Inspiration

2009-12-02T05:48:00.002-06:00

Here are two inspiring stories individuals with DS.

-Karyn

Girly Update

2009-11-29T21:55:00.002-06:00

Quinn is getting better with her mood, but today was a rough day. We think she was actually constipated and was very angry most of the day until she did the deed, so to speak. Then Neal did the poop test that we have to do (to see if there was blood in her stool), and it came back positive. She will be seeing the pediatrician tomorrow anyway, so the neurologist on call said just wait until then to get it sorted out.

She started smiling more this weekend. If I say "I love you" in a wacky way, she just starts smiling and cracking up. It is a miracle to see. She also loves it when we sing to her and that brings smiles (except when in a foul mood because of constipation). I also noticed something, if you touch her and she doesn't want to be touched, she takes your hands and move them back to you. It is kind of cool to see because it is showing her attitude. It is hard to think of her as a two-year-old because she isn't doing two-year-old things, but here it shows she has the spunky attitude of a two-year-old.

Hopefully things go well tomorrow and there are no additional concerns with her poop. What great things to update you on, but at least I had pictures of Quinn in her pig tails.

-Karyn

Please Sponsor an Angel

2009-11-29T21:35:00.005-06:00

Tonight Riley and I selected our little one from Reece's Rainbow that we are going to sponsor for the Christmas Angel Tree. I just got our donation ready to go out in the mail tomorrow. If you haven't checked out Reece's Rainbow, please go HERE or to the bauble on the left. Reece's Rainbow helps little ones with DS from other countries find their forever families and avoid placement in mental hospitals where they won't receive treatment and will likely die at a very young age.

Please, please check this out - and please consider making a donation or telling others about Reece's Rainbow.

I often think about what if Quinn was born in another country (funny thought I know since she would be born to me and I'm here, but just bear with me and my strange line of reasoning). BUT if she was born in one of these other countries, she probably wouldn't have received treatment for IS and she would have regressed and had a horrible life. She would probably be laying in her crib all day with nothing to do and nobody to love. It really saddens me that other little ones are going through this. It is really happening.

Just to tell you a little about our choice, Ivy. She is an at-risk girl. Hopefully she will find a family soon, otherwise she will be moved to a mental hospital where there is no turning back and leaving after that. Ivy was born September 16, 2005. She has sandy blonde hair and blue eyes. She is described as a favorite at her orphanage. She walks and does many things independently. She has several words and is very active. She is healthy, with no heart condition. She is facing the institution, and she needs to find a family soon. Riley was drawn to Ivy and thought she was very cute. We are praying that she finds her family - she deserves that.

Also check this story out - it also involves a little one found on Reece's Rainbow.

If this 11-year-old girl could do something, why can't you?

Thanks!

-Karyn