New Year's Resolution

We completed our New Year's Resolution - Neal and I signed our will and created the special needs trust today. That is a relief that is now done - especially given that even Michael Jacksom might not have completed a will. Get on it people!

Time Flies

Where did the time go today? I looked at the clock and it is already almost 11:30pm!!! Just a bit of what I did today...

I woke up and worked on a manuscript I am reviewing for a journal (didn't finish it though)

Went to church. This was the first time we left Quinn in the nursery. She has never been left anywhere like that since she stays home with Neal. She did great though!

Then went to a baseball game which involved tailgating, eating, buying a racing sausage for Aidan, carting snacks back and forth to our seat, watching drunk people who thought they were sexy and were so not, and watching the team not perform too well. VERY TIRING - but we do this once a year, and the kids love it. Now we are done with that until 2010.

Then spent cuddle time with Quinn, as Neal did some outside work.

And worked on one massive powerpoint for class this week which was not as fun as the powerpoint comedy. The boys were jumping all around me as I worked until they crashed for the night right next to me.

I was going to finish the manuscript, but I am thinking I better wake up early tomorrow for that. Being out in the sun was too much. This was the second Sunday in a row we were in the sun. Here are photos of when we went to the waterpark on Father's Day -





You realize that this posting is basically an indication that I don't have any deep thoughts tonight - LOL. Oh well at least I had something for my massive readership - another LOL.

-Karyn

A Moment with Riley

Tonight Riley told me something upsetting. Throughout last school year he was educating his peers on Down syndrome. He shared with them about the Buddy Walk, told them his sister had DS, and related this to another student with DS that they know. Well he just told me that some weeks back a friend of his told him that this older girl with DS is a "r-word." He said it in a disgusted way. To Riley's credit, he immediately said "That is not right," but he kept this in for weeks because he didn't know what else to do. He didn't want to tell on his friend and get him into trouble. Is this his fate that he has to deal with these microaggressions? We had a nice talk about it and talked about giving people another chance to see if they change, but if this friend still doesn't get it, why be friends with someone like that? I am always struck with what a mature soul Riley has - I am just so sad that he has to go through this because of the way the world is.

-Karyn

Self-Care

The other night I woke up in the middle of the night and there was one thought on my mind. Any idea what worry might have been woken me out of my sleep? My self-care. Not what I would have expected either. It is kind of ironic to WAKE up worrying about your self-care (i.e., self-care would be sleeping soundly through the night), but I did indeed wake up and worry about this. I think it just hit me right then the importance of taking care of myself - I am not getting any younger, you know. And I have a lot of upcoming added responsibilities, so this is all imperative. I responded by getting out of bed (I couldn't sleep anyway) and in the middle of the night I went down to my computer and started typing out my self-care plan. It is far from completion, but a big part of that is TIME OFF! I mapped out all my time-off from my full-time job until the end of the year. I also started to think about little things that will relax me more. For instance, my home office was a complete and absolute MESS. Every time I set foot in here, I would tense up and think, "How on earth did it get like this?!" Last night I cleaned it, put a nice lamp on my desk so I don't have bright overhead lights, and breathed a sigh of relief. It is so nice now even as I type this to know that I am no longer working in so much chaos. I also reset some of my satellite music stations in my car. Now I include the spa station, which I will try to listen to at some point of every day. I still have a lot more to plan, but now I have a start. I am going to write a little every day, read a little, and try to work on working out more.

Why is this self-care important?

Wellness and balance are critical to who you are - your home life, your family, you, and your career. Balance doesn't always mean an equal ratio of what you do - like 50% home and 50% work, but that appropriate combination for you and your family. I work a lot, so for me spacing out time off at my full-time job is essential. I am returning from one vacation on Tuesday and I need to know when the next one will be. I have to take time off every other month. That is just what is best for me.

Some important steps to self-care from Russell-Chapin & Ivey (2004):

Rule #1: Clarify Your Values & Personal Expectations:
It is essential you purposefully understand the why, how, and impact of the personal choices you make. This also involves understanding these choices will make you a healthier person. I have to start thinking more about this when those Oreos are calling.

Rule #2: Understand Your Personal Locus of Control:
Rotter (1973) talked about our Locus of Control (LOC) as the ability and belief about how much control we have over the events around us. External LOC means you believe others’ opinions and influence, chance, and fate determine your destiny. Internal LOC means your own choices mainly determine your life and actions. Rotter believed that we need both internal and external LOC. He felt we need to have a ratio of three to one internal control to external control in order to have the skills necessary for healthy decision making. The more internally controlled you are, the easier responsible living will be. But remember you need some external control - some things are beyond our control. I am working on this as well - evaluating is this something I can do anything about, and sometimes letting certain things GO.

Rule #3: Seek Understanding of These Personal Choices for Yourself:
Examine the needed dimensions of wellness and your choices within each category:
Physical Health – Good or optimistic perceptions about physical health correlate positively with greater levels of actual physical activity. If you don’t have your physical health, overall wellness is often more difficult to obtain. But this is not the biggest predictor of overall wellness. This is an area I need to work on. I will be buying more healthy meals for when I am away from home and trying to walk up those stairs more.
Emotional Well-Being – Being secure with who you are, the emotions you allow yourself to have, and your stated values are essential elements in overall wellness. Two major elements are important, strong self-esteem and positive regard for who you are. Positive self-esteem is correlated to internal locus of control, physical activity, and a principle centeredness. I am usually pretty solid on this one.
Intellectual Enrichment – Your perception of just the right amount (not too much/too little) of intellectually stimulating information. I have this one down.
Life Work Satisfaction –
Passion and satisfaction for all your life entails. Got this one.
Social Effectiveness –
Is one of the two areas that holds the highest predictive weight for overall wellness! Social support is positively correlated with physical and psychological well-being. It is the need for a strong social network of friends and family. It is so important to have and provide support to yourself and others. I have a good support network. Sometimes I just have to work on reaching out to them more.
Spiritual Awareness –
This is the other area that holds the highest predictive weight for overall wellness! A healthy spiritual life is associated with better physical and psychological health outcomes and overall well-being. This involves the positive perception and belief that every life has purpose, meaning, and significance. I am growing in this area, but I can do more.

Rule #4: Repeat and Share These Same Steps and Processes with Those Significant Others in Your Social System:
We learn and use things more successfully when we share with others. This also provides us with a feedback loop - we get feedback on how are we doing. This is what I am doing here - I need to keep myself accountable for self-care and revisit it periodically which is why I am posting about it. But really everyone could use improved self-care, so maybe this gets others thinking about it.

-Karyn

Powerpoint Comedy

I found this on youtube. He cracks me up. I wish my powerpoints in class were as fun.



-Karyn

Microaggressions

Last night in class we talked about microaggressions. These are brief, everyday exchanges that send a denigrating message to a target group. They can be against any minority group such as one related to race, gender, religion, and/or sexual orientation - but I am going to relate microaggressions to the area of disability given that is my focus of this blog. So in terms of my discussion, these would be exchanges that give a denigrating message against people with a disability. You think these ever happen? You bet.

Sue and Sue (2008) indicate that microaggressions are often subtle in nature and can be manifested in verbal, nonverbal, visual, or behavioral ways. Most often they are automatic and unconscious (like use of the r-word with some individuals when the word just slips out and they are unaware of their use of it), but microaggressions can also be delivered intentionally (like with some purposeful message of hate meant to directly hurt those with a disability or their families).

There are three basic types of microaggressions. A microassault is a blatant verbal, nonverbal, or environmental attack intended to convey discriminatory and biased sentiment. There are three ways this can manifest. First, the use of a microassault could be overt when some anonymity can be ensured (I think this often seen on the internet in how some individuals talk about those with a disability). Secondly, it can be used when in presence of others who the messenger thinks will tolerate the microassault. I liken this area to Ben Stiller's movie Tropic Thunder. He probably saw the characterization of Simple Jack as something people would tolerate, and he was probably quite surprised by the strong reaction from advocacy groups. Lastly, a microassult can occur when people lose control of feelings and actions - maybe out of anger or because of the use of some substance, they lash out.

The second type of microaggression are microinsults. These are unintentional behaviors or verbal comments that convey rudeness or insensitivity or demean a person’s identity. They are characterized by some insulting hidden message. Use of the r-word and using it to describe someone or something would be an example. Until tonight I never realized that Charlie and the Chocolate Factory has the r-word in it. Riley approached me earlier to tell me the guy who gets teeny-tiny and goes inside the TV says the r-word at one point about something being so easy...you get the point. That would be a microinsult.

Lastly, Sue and Sue describe a microinvalidation as verbal comments or behaviors that exclude, negate, or dismiss the psychological thoughts, feelings, or experiential reality of the target group. Again this is usually unintentional and outside awareness of the aggressor. It would be things like "oh it will be ok" or just not acknowledging the mother of a child with Down syndrome in the cry room (not that that ever happened to me or anything - LOL).

What are the problems these microaggressions cause for the target? They can feel negated and dismissed. It hurts them. However, if it is something that was only given in a verbal exchange, they may not have evidence, only a felt experience. They may begin to doubt themselves and what happened. And this microaggression can be explained away and disregarded by alternative explanations. So they are left wondering. Also others may discount the significance of the distress caused, but over time it can negatively impact well-being. Lastly, it puts the target in a difficult situation. They experience risk if confronting the aggressor, but also experience risks if they don’t confront. Ultimately for myself, I decide to risk confronting because all see in my mind is Quinn's face and feel the need to do something.

-Karyn

U2, Marriage, & DS – With or Without You

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





-Karyn

Aidan-antics

Tomorrow Aidan has his evaluation for speech/language services. The evaluation will be conducted at his preschool. Neal and I were talking to him about it and the need to cooperate with this woman who will be coming to talk him at his school (he sometimes gets an attitude about doing things, so we were hoping to prevent this). Aidan first asks Neal, "Is she a granny?" Neal says no (not sure how he knows how old she is). Then Aidan asks, "Is she hot?" Ok one could interpret this as being related to our hot humid weather here right now, but I KNOW that isn't what he meant. We had to have a bit of a talk with him following this statement. Now tonight I am praying that Aidan doesn't attempt to pick-up the speech language pathologist while she is doing the evaluation!!!!! By the way, you should have seen Riley's face (the look of shock and horror) as this conversation was happening. Let's just say Quinn will have an interesting life with her brothers around.

-Karyn

More Smiles

I got the word yesterday about another job too - I will be picking up some contract work! Crazy woman I am with four jobs now (one full-time and three part-time). I am a workaholic, I know this - I grew up on a farm and you certainly learn how to work when you come from a farming background. But believe it or not I do have time with my kids. I just start limiting my sleep and multitasking plus there isn't really a lot of new work involved when you already created a class and you go and teach it. I actually perform better with having so many things going on. Gee do I have a bit of mania? Seriously, I don't know how or why.

Plus I have to cut back hours at my full-time job because of furloughs so I do need to pick up some things to keep afloat financially. I am so excited about these new adventures (two of my part-time jobs are new). I feel so blessed to have these opportunities, especially right now when things are so rough. Neal was laid off when I was pregnant with Quinn, so maybe it is also my obsession with not having all my eggs in one basket so to speak with jobs and career.

Also just for fun, since I am in a smiling mood, here is another photo of the kiddos on our vacation...



-Karyn

Olmstead v. L.C. & E.W.

This week marks the 10 year anniversary of the Supreme Court’s decision on Olmstead v. L.C. and E.W. Once again I am completely struck by how little we learn in our educational system about disability issues. This case is the disability version of Brown v. the Board of Education. Now even though I know there is a long way to go with sensitivity towards race in our educational system, I want to note that at least when I was in college Brown v. the Board of Education was drilled into my head by my professors. Olmstead v. L.C. and E.W., however, I didn’t learn about until today. Granted I was just finishing up my graduate degree in the late 90s, but you still would have thought professionally I would have heard about this. Maybe it is now being taught, but I highly doubt it because the vast majority of the time that I bring up disability rights and/or disability history with my own graduate students they seemed unaware. And if the professors were not taught that this stuff was important when they were in school, that is only going to trickle down to the current students.

Here is a little background on the case (and note that I don’t purport to be an expert since I just learned about this today). The respondents of the case were both women who had cognitive disabilities. L.C. also had a diagnosis of schizophrenia, and E.W. was diagnosed with a personality disorder. Both women were voluntarily admitted into a hospital in Georgia for treatment and were then confined to a psychiatric unit. Treatment professionals eventually stated that both woman could receive appropriate treatment in the community, but the women remained institutionalized because the State of Georgia did not act on placing them in the community. The state argued that it was all about money, but the respondents indicated that this was discriminatory. The court ruled that limiting services to institution settings was a violation of the Americans with Disabilities Act. They should receive treatment in whatever may be the most appropriate and least restrictive environment.

So what has happened in the ten years since this ruling? Here are some points from two articles that were forwarded to me via email (Thanks Johanna for this information) (http://www.propublica.org/feature/nursing-homes-get-old-for-many-with-disabilities-621 and http://jfactivist.typepad.com/jfactivist/2009/06/olmsteads-anniversary-and-disability-civil-rights.html):

“Nationally in 2007, more than 331,000 people were on waiting lists for community services. About two-thirds have developmental disabilities, and the rest have other disabilities or are elderly.”

“More than 140 lawsuits have been brought across the country. While many led to individuals leaving institutions, they haven't always changed state Medicaid programs.”

The status of this varies state to state. “In Tennessee, only 1 percent of Medicaid long-term funds for disabled and elderly adults went to community services in 2007. By contrast, Arizona spends 64 percent of Medicaid long-term care money on community services.”

”More than 313,000 people with disabilities in nursing homes (23% of the total) want to live in the community, and yet are denied their civil right to integration, primarily because of Medicaid's historical bias in favor of segregation.”

Steve Gold asks an important question in the second article: “What do we have to do to create the atmosphere of the 1960s for the disability civil rights struggle in 2009?” Something needs to be done related to disability rights today – part of the problem is that a lot of people don’t know what is going on, don’t want to know what is going on, and/or don’t really care. Disability rights is certainly one of the most salient multicultural concerns of today.

-Karyn

Race vs. Disability

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

What I Wonder

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



-Karyn

Follow-Up

Remember my post about changes (here), well I received the best news possible today. I will make a change in where I work for one of my part-time jobs!

During the last week I have been so nervous about if I got the job or not. I had to keep reminding myself that I have been through more difficult moments (like when we received Quinn's diagnosis). There is nothing like that to put things into perspective. It it was not for my darling daughter, I would never have tried to make such a change. I owe everything to her!

I am on the top of the world! You want to see where I will be working....



Happy, happy I am!!!

-Karyn

Devils Tower

Here is a photo of the kiddos at Devils Tower in Wyoming. Getting a photo of all three looking good was very difficult!



-Karyn

A Four-Year-Old Pick-Up Artist

I have a four-year-old pick-up artist living in my house. He just so happens to be my son, Aidan. About nine-months ago he started to talk about marrying me. It was kind of cute and may be every mother's dream that their little son would think they are the most beautiful woman in the world. But it has now gotten way out of control. He has been saying some more things like...

"Hey beautiful, how are you doing?"
"Mom, you are HOT."

Who says this stuff? Aidan, that is who. Plus he always has to sit next to me and always plays with my hair. This is an obsession like no other - an Oedipus Complex!

Oh well, soon enough he will not want to have anything to do with me, so I better enjoy this while it is happening. It probably is more of a prelude to when he will be a teenager and all those girls he will charm with his long eyelashes. Check out those eyes in this photo. Oh boy, we are in trouble...




-Karyn

Riley, Wisconsin

Riley is named after Riley, Wisconsin because that was where his grandfather was born. It is another very small town. Here is a photo of Riley outside of Riley, WI! We are now on a mission to find if an Aidan somewhere exists and then have Aidan's photo taken there. Then we will have the complete collection. If anyone knows of such a place, let us know.



-Karyn

Happy Father's Day, Neal

I know I don't write as much about Neal on my blog, but today I want to share something about him given that it is Father's Day.

Neal,

Thank you for everything you do for our family. You are a great father. The kids are truly blessed because you are so involved in their lives. Each time I see the boys playing baseball or soccer with you in the backyard I know that they will forever cherish these memories. I always remember the times when I did something like make a snowman with my father, but these moments were few and far between because of the limited time he had to spend with me. It is great to know that for our children, things are different - they get their father in their lives on a more regular basis. Thank you for doing a job that I know that I would have great difficulty with - being a stay-at-home parent and doing all the things necessary to run the household.

I also know that Quinn is truly blessed to have you. You do so much for her and all her progress, her health, and the smile on her face are all because of you. I know you sometimes get discouraged like you should do more therapy exercises with her or because her motor skills aren't progressing as fast as you would like, but just remind yourself that this little girl is truly lucky to have a daddy like you. You will forever have a bond with your daughter unlike many other fathers and daughters. She loves you more than you know. You are the center of her world.

I hope you have a great Father's Day. Thank you again for all you do for us.

Love,

Karyn

Head over Heals - Literal Version

I was introduced to these literal version videos through downsyn.com. I found this one from the 80s that is pretty cool. I know for sure that at least Wendy will love it!



-Karyn

To Those With a Prenatal Diagnosis

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

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

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

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

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

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

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

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

-Karyn

Badlands

I LOVE this photo!!!!!


-Karyn

Mt. Rushmore

Here is another photo of Quinn's trip out to South Dakota. I was a bit nervous here with having her sit on the ledge - you can see from Aidan's face that he was too!

Quinn, South Dakota

Quinn went to Quinn, South Dakota - population 44! Ok she was sleeping at the time, but she still was there!

-Karyn

A Bruise

This Quinny of mine is a beast! I was laying down with my arms under my head and Neal and Riley asked me what is up with this huge bruise on my arm. Well I looked down and yikes!!! I put it together. Every night this week I have been taking Quinny to the pool. She loves to pinch me right in this certain place on my arm. Needless to say, tonight was some kind of pain when she did this! Is this some kind of therapy for her?

-Karyn

Thank You, Down Syndrome

I heard Alanis Morissette's song Thank You on the radio today. It has been a long time since I heard it (I was listening to the 90s station on my satellite radio). I thought about the lyrics of the song - the importance of being thankful for everything and its role in your life. I am actually thanking Down syndrome today. Here is the song and lyrics...

How about getting off of these antibiotics
How about stopping eating when I'm filled up
How about them transparent dangling carrots
How about that ever elusive kudo

Thank you India
Thank you terror
Thank you disillusionment
Thank you frailty
Thank you consequence
Thank you thank you silence

How about me not blaming you for everything
How about me enjoying the moment for once
How about how good it feels to finally forgive you
How about grieving it all one at a time

Thank you India
Thank you terror
Thank you disillusionment
Thank you frailty
Thank you consequence
Thank you thank you silence

The moment I let go of it was
The moment I got more than I could handle
The moment I jumped off of it was
The moment I touched down

How about no longer being masochistic
How about remembering your divinity
How about unabashedly bawling your eyes out
How about not equating death with stopping

Thank you India
Thank you providence
Thank you disillusionment
Thank you nothingness
Thank you clarity
Thank you thank you silence

yeah yeah
ahh ohhh
ahhh ho oh
ahhh ho ohhhhhh
yeaahhhh yeahh

Dear Little Girl at the Swimming Pool,

Dear Little Girl at the Swimming Pool,

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

Sincerely,

Quinn's Mom

Kissie Kissie

My girl, Quinny, and I were playing in the swimming pool today and she does the best thing ever! She puts both of her hands on my face and pulls me in. Then she gives me a big open mouth kiss right on the lips. Gotta love her!

Riley, on the other hand, has had a bad day. A bird flying overhead pooped and it landed on his hair and down the back of his shirt. Now he hates birds!

Aidan was afraid of a fly at McDonalds and then called a group of girls, "hot." I am in big trouble with that one!

-Karyn

Value What You Have

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



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

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

-Karyn

I Have a Voice

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

Changes

Today was a day of potential good changes for me. First I had a job interview for a job that I soooooooooo hope I get. It is for one of my part-time (workaholic - ha ha) jobs. I have been thinking about making a change for a while and so hope this one works out. I have been looking into my heart and thinking about what I really want, and I think I found the answer. It would be such an honor for me to get this position and a great change that would advance my career. FINGERS ARE CROSSED. If it wasn't for Quinn, I would never have considered applying for a job at this place before - but Quinn has pushed me to do things I never ever imagined before. I would never have felt that I was worthy of such a position, but now I know I have a lot to offer because of Quinn's teachings.

Then this evening another change due to Quinn. I have started to speak to psychologists in the field or in training about sensitivity towards families with children with disabilities. And tonight was the first training I completed that was through a graduate program that I am not affiliated with. My message is branching out. I do think I made some people think tonight. Another blessing because of Quinn. My girl has inspired me to do things I would never have imagined. Thank you, Quinny. This is a personal goal of mine, to do more and more of these presentations.

-Karyn

A Warm-Up

Things have a funny way of working out. I never dreamt that I would sit on the other side of IEPs. Being trained as a school psychologist, I always thought I would see them from that cushiony side - the professional side. But Quinn entered my life and the story then changes. In another interesting twist of fate, I am getting a warm-up to my experience as a parent with IEPs. Today we received the paperwork about Aidan's Speech/Language Evaluation. At his Kindergarten screening, the school decided they wanted to follow to see if he should have services. I kind of knew this would be coming along since sometimes people have a difficult time understanding him. Somehow I always know what he is saying though! Who would have thought big brother Aidan would pave the way for his little sister Quinny on educating his parents about the being on the other side of the process. Yes, things have a strange way of working out in my life.

-Karyn

History Timeline

From the Museum of disABILITY History:

15th Century: The court fool was a part of medieval society. Some jesters were disabled either physically or mentally.

1756: Patients at the Pennsylvania Hospital in Philadelphia were chained to the walls of the basement and put on display for a fee.

1841-1845: Dorothea Dix advocates for separation of disabled incarcerated in penitentiaries. The first asylum was built in New Jersey. She is able to convince several other stages to do the same.

1883: The term “eugenics” is coined by Sir Francis Galton.

1907: Indiana passes the first eugenic sterilization law.

1915: Dr. Harry Haisalden allows a newborn with a disability to die and promotes this as a way to reduce the disabled population.

1927: Buck v. Bell is heard by the Supreme Court. Chief Justice Oliver Wendell Holmes wrote the majority decision that Buck’s sterilization was constitutional because “three generations of imbeciles are enough.”

1941: Rosemary Kennedy is lobotomized and sent to the St. Coletta School in Jefferson, Wisconsin two years later in 1943. She spent 57 years at the school until she passed away at the age of 86.

1953: Medical experiments are conducted on 100 boys at the Fernald School in Waverly, Massachusetts. The boys were subjected to radioactive elements in their food to determine the effects.

1963-1966: Medical researcher Saul Krugman intentionally infected children placed at Willowbrook, either orally or by injection, with hepatitis in order to study what would be the most effective treatment.

1964: Civil Rights Act is passed outlawing discrimination based on race. Framework for disability rights legislation.

1965: Senator Robert F. Kennedy visits Willowbrook State School and labeled the deplorable conditions a “snake pit.”

1972: Geraldo Rivera does an expose on the Willowbrook State School that leads to a federal inquiry.

1973: Passage of the 1973 Rehabilitation Act. The discrimination of those with disabilities is addressed for the first time in Section 504. Qualified persons seeking employment could not be discriminated against based on their disability.

1975: “The Education for All Handicapped Children Act,” public law 94-142, was passed in 1975.

1986: Bernard Carabello founded the Self-Advocacy Association of New York State. He was formally at Willowbrook.

1990: President George Bush signs the ADA.

Accepting Both the Good and the Bad

I have been blessed. Before Quinn I lived what might have seemed to others as the perfect life in a lot of respects. But I was missing so much - so so much. Of course, my beautiful daughter Quinn - but also much more too - also my faith. I was a Christian, but didn't in my heart understand how things work. I was going through the motions. It is kind of easy to say you believe in God when nothing that bad happens to you. Now I have been tested and I see that part of what God does (if you are lucky) is He gives you both good and bad things in your life. Even what we perceive as being the worst thing possible could ultimately be something that teaches us, makes us better, stronger, and brings us closer to God. I was blessed with this experience on so many levels. Now when I sit in church I totally understand the sermon - I feel it in my heart. I really do believe that unless you experience something that radically alters your world, you don't quite deep down at that emotional level understand what it is all about. This doesn't mean that I am not still coping with things and won't have difficult moments (and the Why Me questions), but for now I am basking in the glory of this side-effect of having a child with a disability.