We raised $3335 for the Down Syndrome Association of Wisconsin and had a great day! Thanks Wendy for the awesome photos! Thank you everyone who helped us!
-Karyn
What day is it, even?
5 years ago
Sunday, September 27, 2009
Walk the Walk
We raised $3335 for the Down Syndrome Association of Wisconsin and had a great day! Thanks Wendy for the awesome photos! Thank you everyone who helped us!
-Karyn
Robert Pio Hajjar
This video is so inspiring and educational for all of us. It came into my life at such an important time for me and lifted my spirits at a time I needed it. Robert Pio Hajjar is such a beautiful, loving person. A leader who asks all of us about what is our vision, our purpose. Do something positive, like him! He looks at the positive, not negative. He is the founder of IDEAL-WAY, which believes every person should be included, deserving, equal, appreciated and loved. So true. So important. He builds us up instead of tearing us down and he taps into the philosophy of positive psychology, building on the strengths. I can't express how much hearing his message meant to me. He is the voice of my daughter. I cried tears of joy. Please watch. You won't regret it.
-Karyn
-Karyn
Friday, September 25, 2009
Support
Support.
What is it not?
Giving advice when one just wants a hug.
Demonstrating your need to show you have some special knowledge on the subject.
Letting politics get in the way.
Challenging or confronting someone when the person is not psychologically ready.
Focusing on yourself.
Not being there.
Holding people up to the standard of perfection.
Talking more than you listen.
Thinking you know how someone feels.
Making assumptions or judgments.
Support.
What is it?
Listen with no judgement.
Give advice only when asked for the advice.
Understand that two people can go through the same general problem, but that each experience can be quite unique.
Leave your personal or political agenda at the door.
Recognize that there is an appropriate time and place for caring confrontation. Sometimes the person isn’t ready for it. Other times they may need some nudging. There is a very fine line that you should try your best not to cross.
Self-disclose only for the person you are supporting's benefit, not for your own. And when you self-disclose listen more than you talk.
Step up and just help. Don’t wait or sit in silence.
Recognize there is a learning curve to this journey – when you are new to this, you have raw emotion. Sometimes you need to grieve. Sometimes you will be contradictory in how you feel. It doesn't mean you are lying.
Always remember we are all human.
Sometimes I receive great support, sometimes not.
Sometimes I witness others giving great support, sometimes not.
Sometimes I myself give great support, and sometimes I sadly do not.
But it is my opinion that what we really need to do as a community of individuals who love someone with Down syndrome is to set aside our personal agendas, learn from the example of our children’s love, and try to improve in the support we give to one another. As stated above, we are human, but we can at least try.
-Karyn
What is it not?
Giving advice when one just wants a hug.
Demonstrating your need to show you have some special knowledge on the subject.
Letting politics get in the way.
Challenging or confronting someone when the person is not psychologically ready.
Focusing on yourself.
Not being there.
Holding people up to the standard of perfection.
Talking more than you listen.
Thinking you know how someone feels.
Making assumptions or judgments.
Support.
What is it?
Listen with no judgement.
Give advice only when asked for the advice.
Understand that two people can go through the same general problem, but that each experience can be quite unique.
Leave your personal or political agenda at the door.
Recognize that there is an appropriate time and place for caring confrontation. Sometimes the person isn’t ready for it. Other times they may need some nudging. There is a very fine line that you should try your best not to cross.
Self-disclose only for the person you are supporting's benefit, not for your own. And when you self-disclose listen more than you talk.
Step up and just help. Don’t wait or sit in silence.
Recognize there is a learning curve to this journey – when you are new to this, you have raw emotion. Sometimes you need to grieve. Sometimes you will be contradictory in how you feel. It doesn't mean you are lying.
Always remember we are all human.
Sometimes I receive great support, sometimes not.
Sometimes I witness others giving great support, sometimes not.
Sometimes I myself give great support, and sometimes I sadly do not.
But it is my opinion that what we really need to do as a community of individuals who love someone with Down syndrome is to set aside our personal agendas, learn from the example of our children’s love, and try to improve in the support we give to one another. As stated above, we are human, but we can at least try.
-Karyn
Tired
Sorry I haven't been posting much lately. I am not even sure if I have many readers anyway, but nonetheless I look at my own blog and see the limited postings. My life has been hectic lately to say the least. I have been thinking about a lot lately, but haven't had much time to write about things or follow on the things I need to do. It seems like every other minute there is something new I need to attend to. But I need to set that aside tonight and take a little time for me.
Anyway, I do want to take a moment and talk about some great things - I can't go on and on about how very tired I am. I must state the following - I am so grateful to everyone for receiving such wonderful donations and support for our DS Awareness Walk. Janelle if you read this, you rock. Quinn is blessed to have you in her life. You have raised more money than anyone on our team and you are someone who gives so much to others. Thanks Wendy for being a great cheerleader to me and putting up with my stressed out rants. Wow the donations from so many beautiful people we know (you know who you are) - some of you I see all the time and some I don't get to see that much anymore - your gesture just lifts my spirit on how accepted and loved my beautiful daughter will be someday. THANK YOU!
-Karyn
Anyway, I do want to take a moment and talk about some great things - I can't go on and on about how very tired I am. I must state the following - I am so grateful to everyone for receiving such wonderful donations and support for our DS Awareness Walk. Janelle if you read this, you rock. Quinn is blessed to have you in her life. You have raised more money than anyone on our team and you are someone who gives so much to others. Thanks Wendy for being a great cheerleader to me and putting up with my stressed out rants. Wow the donations from so many beautiful people we know (you know who you are) - some of you I see all the time and some I don't get to see that much anymore - your gesture just lifts my spirit on how accepted and loved my beautiful daughter will be someday. THANK YOU!
-Karyn
Tuesday, September 22, 2009
Kelly Fitzgerald
I have seen this a few places now, but I know that some people who read my blog don't necessarily read other DS blogs - so I wanted to share this with all. Kelly Fitzgerald is an inspiration, but more importantly her mother is an inspiration to me. What a great family and what a great story. If you haven't seen this story, please watch it.
Saturday, September 19, 2009
Tuesday, September 15, 2009
Breaking the Silence
I haven't posted for a while - It has been crazy busy. I have been thinking about a lot though and just haven't had the time to write it down. Things like - why are there politics even in the world of DS (why can't we just come together)? What is real support? How DS can change some relationships. Stuff like that. Maybe someday there will be posts on those subjects.
Quinn has been doing great. She is more active - not crawling, but getting closer. She is scooting around. She will see a neurologist next month because her head periodically drops. Hard to explain, easier to demonstrate but obviously can't in this format. I am really proud of myself that I am not worrying about that right now. Not much you can do about it now and we just have to wait to see what they say. One day at a time....
I am also proud of how I reacted to a situation over the weekend. We were at a picnic and there was a little girl there who was born a few days before Quinn. She is doing all this stuff - walking, talking, getting herself a drink of water - she was a little spit-fire. Normally there would be this pain in my heart at those time - grieving the loss of my dream of a typical daughter. But this time, I had none of that. I noticed all this little girl could do and found it interesting the difference between Quinn and her, but the pain wasn't there. That was kind of cool. I know the pain may come back some time (it can be like that sometimes, just relapsing out of nowhere), but for now I am celebrating.
-Karyn
Quinn has been doing great. She is more active - not crawling, but getting closer. She is scooting around. She will see a neurologist next month because her head periodically drops. Hard to explain, easier to demonstrate but obviously can't in this format. I am really proud of myself that I am not worrying about that right now. Not much you can do about it now and we just have to wait to see what they say. One day at a time....
I am also proud of how I reacted to a situation over the weekend. We were at a picnic and there was a little girl there who was born a few days before Quinn. She is doing all this stuff - walking, talking, getting herself a drink of water - she was a little spit-fire. Normally there would be this pain in my heart at those time - grieving the loss of my dream of a typical daughter. But this time, I had none of that. I noticed all this little girl could do and found it interesting the difference between Quinn and her, but the pain wasn't there. That was kind of cool. I know the pain may come back some time (it can be like that sometimes, just relapsing out of nowhere), but for now I am celebrating.
-Karyn
Sunday, September 6, 2009
Confessions
I promised Riley I wouldn't go into all the details on my blog, but every other day lately he has come along with a confession about himself for either myself or his daddy. Not sure what inspired all of this - especially since some of these confessions date back to the age of three (he is eight now). But as a parent, one could look at this in a positive manner - it means he is honest and will have guilt if he does something someday that is wrong. In addition, it also means that he is responsible and I know he will watch over Quinn (and not spend up her money) if we aren't around. That is all reassuring.
Anyway, Riley's ongoing confessions made me think about how when one becomes honest about something, it can be all so freeing. After the first confession (which was quite interesting), he felt that he could tell us anything. And so he has continued. And continued. He has even started sharing his current dreams for possible dream interpretation. I have seen this trend at work too. When a client starts opening up and trusting that they can share certain things with me, pretty soon they share all kind of things. It is a release. It becomes therapeutic to not only be open with others, but mainly yourself.
Quinn has done this for me. Before Quinn I would never have admitted certain things about myself - my life. I would under most circumstances and places have portrayed my life as near-perfection. I certainly wouldn't have talked so openly about difficult feelings or even have had a blog like this. But the reality of this situation is that it was not perfection back then - even with two typical children, things were certainly not perfection. But Quinn helped me become honest about this. I wonder how many people with typical families don't share their fears, concerns, feelings because of the drive for perfection. I know people like this. Once I "confessed" having a child with DS, it was all so freeing and the honesty flooded out like with Riley's multiple confessions. I wish this for others and am thankful for this experience. Once again the power of Quinn is apparent in my life.
-Karyn
Anyway, Riley's ongoing confessions made me think about how when one becomes honest about something, it can be all so freeing. After the first confession (which was quite interesting), he felt that he could tell us anything. And so he has continued. And continued. He has even started sharing his current dreams for possible dream interpretation. I have seen this trend at work too. When a client starts opening up and trusting that they can share certain things with me, pretty soon they share all kind of things. It is a release. It becomes therapeutic to not only be open with others, but mainly yourself.
Quinn has done this for me. Before Quinn I would never have admitted certain things about myself - my life. I would under most circumstances and places have portrayed my life as near-perfection. I certainly wouldn't have talked so openly about difficult feelings or even have had a blog like this. But the reality of this situation is that it was not perfection back then - even with two typical children, things were certainly not perfection. But Quinn helped me become honest about this. I wonder how many people with typical families don't share their fears, concerns, feelings because of the drive for perfection. I know people like this. Once I "confessed" having a child with DS, it was all so freeing and the honesty flooded out like with Riley's multiple confessions. I wish this for others and am thankful for this experience. Once again the power of Quinn is apparent in my life.
-Karyn
Saturday, September 5, 2009
Including Samuel
I love documentaries. I am always on the look-out for them – especially ones that have to do with psychology, disorders, prison, or disabilities because of my professional and personal interests. My post-doc intern gave me a head’s up on this one, Including Samuel by Dan Habib. Here is the summary of the film:
“Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib's award-winning documentary film, Including Samuel, honestly chronicles the Habib family's efforts to include Samuel in every facet of their lives. The film also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts.
Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.
Including Samuel has been featured on NPR’s All Things Considered, Good Morning
American NOW and in the Washington Post and the Boston Globe. Exceptional Parent magazine said “Including Samuel is a must see film.” The film won the Positive Images in Media award from TASH, an international group committed to the full inclusion of people with disabilities. The film was also screened at the Sprout Film Festival at the Metropolitan Museum of Art (NYC) and named “Best Documentary” at the Somewhat= North of Boston Film Festival. The global aid group Mercy Corps is using the film to support the Iraqi disability rights movement.”
The film will be broadcast at different PBS stations throughout the country. In the Milwaukee area it will be on Saturday, September 12th. If you would like to see when and where it will be broadcast you can here.
I am drawn to these stories of families trying to figure out the best way to raise their child and the best balance of services for their child our educational system. I am unsure how I exactly feel. I totally agree with the statement from the film that having a child with a disability brings the disability rights movement right inside your house and in your living room. It was an area that I was completely naïve to before Quinn. So many people are. In fact, too many people are. And that is the problem. I want Quinn to have the same rights as everyone else. I want to take away and erase the horrible history of how individuals with disabilities were treated. But I cannot. I have learned so much about how equal rights for those with disabilities is the final frontier of the civil rights movement – how sad that they have lagged so far behind in access and equal treatment. It is really shameful of our society to be this way. But on the other hand, I want Quinn to receive therapy and services, not just get 100% the same as everyone else – she needs an individual educational plan – one with the best fit for her. She needs to know that there are other beautiful girls and boys with DS. It is just so hard to balance.
“Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib's award-winning documentary film, Including Samuel, honestly chronicles the Habib family's efforts to include Samuel in every facet of their lives. The film also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts.
Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.
Including Samuel has been featured on NPR’s All Things Considered, Good Morning
American NOW and in the Washington Post and the Boston Globe. Exceptional Parent magazine said “Including Samuel is a must see film.” The film won the Positive Images in Media award from TASH, an international group committed to the full inclusion of people with disabilities. The film was also screened at the Sprout Film Festival at the Metropolitan Museum of Art (NYC) and named “Best Documentary” at the Somewhat= North of Boston Film Festival. The global aid group Mercy Corps is using the film to support the Iraqi disability rights movement.”
The film will be broadcast at different PBS stations throughout the country. In the Milwaukee area it will be on Saturday, September 12th. If you would like to see when and where it will be broadcast you can here.
I am drawn to these stories of families trying to figure out the best way to raise their child and the best balance of services for their child our educational system. I am unsure how I exactly feel. I totally agree with the statement from the film that having a child with a disability brings the disability rights movement right inside your house and in your living room. It was an area that I was completely naïve to before Quinn. So many people are. In fact, too many people are. And that is the problem. I want Quinn to have the same rights as everyone else. I want to take away and erase the horrible history of how individuals with disabilities were treated. But I cannot. I have learned so much about how equal rights for those with disabilities is the final frontier of the civil rights movement – how sad that they have lagged so far behind in access and equal treatment. It is really shameful of our society to be this way. But on the other hand, I want Quinn to receive therapy and services, not just get 100% the same as everyone else – she needs an individual educational plan – one with the best fit for her. She needs to know that there are other beautiful girls and boys with DS. It is just so hard to balance.
Friday, September 4, 2009
Monday, August 31, 2009
Fathers
I feel happy that my children have so much interaction and influence from their father (yes, Neal I am talking about you if you are reading this). I love these PSAs - maybe someday Neal will cheer with Quinny :>)
Sunday, August 30, 2009
Having a Moment
Our anniversary was nice. We went out for drinks and dinner. I felt like a grown-up for once - ha ha. Maybe we can be grown-up more often because we found out this week that we qualified for respite care, which is way cool. What it involves is that we will get reimbursement for child care for so many hours each month for us to go out or take a break. It is through an organization for families with children with disabilities. We applied for it right after Quinn was born, and our name finally came up on the waiting list. Now the true test will be actually taking the time to use the hours. It would be nice though - especially for Neal - since he spends so much time with the kids. I think that is a nice idea this respite care, to help families and parents. So many times we hear about the negative stuff - like the risk of divorce, but this counters that.
Now to the title of this post...Aidan just cracks me up. Last night after Neal and I came home, the boys were still up. Aidan came over and sat by me. He was kissing me (little pecks on the lips) and then when Neal asked me a question (interrupting the kiss), Aidan replies "Um we are having a moment here!" Where does this guy get this stuff?? Just two more days until he starts Kindergarten. I am getting my Kleenex ready.
Today he asked me if I would break up with his dad, so he can marry me. The day after our 11th year anniversary, he asks me this??? The guy has no shame - ha ha. I explained to him that the day will come when he won't want to marry his mother (gee I hope it does), so he will someday thank me for not breaking up with his dad. There is never a boring moment around here. Riley just laughs at such conversations and Quinn doesn't know what a goofy bunch she has joined into.
I feel like school is starting for me too. Tomorrow I go into work on a Monday for the first time in 10 years. I changed my schedule to make things more manageable. I will also start teaching at MU tomorrow night - I am way excited!!!
-Karyn
Now to the title of this post...Aidan just cracks me up. Last night after Neal and I came home, the boys were still up. Aidan came over and sat by me. He was kissing me (little pecks on the lips) and then when Neal asked me a question (interrupting the kiss), Aidan replies "Um we are having a moment here!" Where does this guy get this stuff?? Just two more days until he starts Kindergarten. I am getting my Kleenex ready.
Today he asked me if I would break up with his dad, so he can marry me. The day after our 11th year anniversary, he asks me this??? The guy has no shame - ha ha. I explained to him that the day will come when he won't want to marry his mother (gee I hope it does), so he will someday thank me for not breaking up with his dad. There is never a boring moment around here. Riley just laughs at such conversations and Quinn doesn't know what a goofy bunch she has joined into.
I feel like school is starting for me too. Tomorrow I go into work on a Monday for the first time in 10 years. I changed my schedule to make things more manageable. I will also start teaching at MU tomorrow night - I am way excited!!!
-Karyn
Saturday, August 29, 2009
11 Years
Eleven years ago, on a Saturday, Neal and I were married. It was the end to a crazy, crazy week which included Neal and friends moving our stuff to Evanston, my dissertation defense (note that your committee is nicer to you when they know you are getting married in like three days), my last day of my internship (the day before our wedding), and then all the usual wedding stuff on top of it - rehearsal dinner and actual wedding. All that should have been foreshadowing for how our life would be - always action packed, a lot going on, fast-paced, and never boring. I thank Neal for putting up with that part of me because I have a feeling it really originates from me and my tendency to over-extend myself.
Since our wedding 11 years ago, we have moved twice, bought our own house, had three beautiful kids, taken vacations, changed and left jobs, experienced losses, loved life and one another. I am not a mushy person (anyone who knows me, knows that), but I am taken by this 11 years thing. Maybe because this is the first time that our anniversary actually came up on a Saturday in all the 11 years. Maybe because I look at our beautiful children and think that they wouldn't exist if it wasn't for 11 years ago. Maybe because 11 years is a long time - longer than 10.
Thank you Neal for the past 11 years. I know I am not always an easy person to live with - with all my quirks and all. But thanks for the commitment. That commitment and partnership is so important in raising children, especially one with a disability. Looking forward to the next 11. Love, Karyn
Friday, August 28, 2009
Really Not So Funny
When the movie was released, I had of course heard about the protests and controversy surrounding Ben Stiller's Tropic Thunder. I eagerly read reviews from individuals from my online support group and often wondered what I would think about the film. I wasn't about to spend money on the movie and couldn't bring myself to sneak in there at the time, but I wanted to see for myself what this was all about - the best scenario for me was to watch it without a crowd and not pay anything directly to the movie. Well finally the film came on HBO, which we already have. I ended up watching the end first and then catching the beginning later because of scheduling and poor planning on my part. And quite honestly, it would have been torture for me to watch that movie in one sitting. Obviously I have bias about the Simple Jack stuff, but all and all I must say in my opinion I thought the film was very poor. I get that it was a satire - I just didn't find it very funny.
Four parts bothered me - the clips/portrayal of Tugg Speedman (Ben Stiller) playing Simple Jack, Speedman and Kirk Lazarus (Robert Downey Jr.) discussing going "full r-word," and two scenes related to Speedman's agent Rick "Pecker" Peck (Matthew McConaughey). It is of these two scenes that I want to speak. Speedman wants to adopt a child. Peck says to him something to effect of "Well at least you can pick yours, I am stuck with mine." And then the camera cuts to a photo of his son who appears to have a developmental disability (not DS). The second scene is at the end of the film where you see Peck and his son on a plane. They are sitting across the aisle from one another, not interacting, and his son is wearing a bib to catch drool (or at least that is what it looks like since he doesn't appear to be eating). It is obvious he has some not so positive feelings about his son. I was very disappointed in these two parts. Granted they were a very small part of the film, but they just further perpetuate a stereotype that having a child with a disability is the worst possible thing that can happen to a parent. To this scene and that view, I do have to say that I did have a choice and I choose to have Quinn. I was never stuck with her. I am blessed having her, as she has changed me in so many ways.
Having a child with a disability is not just a burden or a horrible circumstance to endure, as portrayed in brief moments in this film. It can be a life changing, positive, self-actualizing experience. Just yesterday I saw an old student of mine that I hadn't seen since pre-Quinn days. It was so nice to catch up with her. I was talking to her about a psychopathology course that I was teaching this fall. I told her how I am having the students read The Short Bus by Jonathan Mooney because in addition to learning about diagnoses, I want them to learn about sensitivity. What good is one without the other? We need to include both in such a course. She looked at me and said something to the effect that she can see that Quinn has impacted me for the better. There was something beautiful in her eyes at that moment, like she really saw this in me and respected the blessing of that and of this little girl. I felt peace in my heart knowing that this little girl will have an impact on so many future clinicians in the field (that is, if the students listen to me). I am not stuck with her - I was made better by her.
The options in this journey is to either let the experience destroy you/turn you into someone you aren't proud of (Peck's option) OR use it to better yourself, to learn, to experience a whole new world. I choose Quinn and the latter.
-Karyn
Four parts bothered me - the clips/portrayal of Tugg Speedman (Ben Stiller) playing Simple Jack, Speedman and Kirk Lazarus (Robert Downey Jr.) discussing going "full r-word," and two scenes related to Speedman's agent Rick "Pecker" Peck (Matthew McConaughey). It is of these two scenes that I want to speak. Speedman wants to adopt a child. Peck says to him something to effect of "Well at least you can pick yours, I am stuck with mine." And then the camera cuts to a photo of his son who appears to have a developmental disability (not DS). The second scene is at the end of the film where you see Peck and his son on a plane. They are sitting across the aisle from one another, not interacting, and his son is wearing a bib to catch drool (or at least that is what it looks like since he doesn't appear to be eating). It is obvious he has some not so positive feelings about his son. I was very disappointed in these two parts. Granted they were a very small part of the film, but they just further perpetuate a stereotype that having a child with a disability is the worst possible thing that can happen to a parent. To this scene and that view, I do have to say that I did have a choice and I choose to have Quinn. I was never stuck with her. I am blessed having her, as she has changed me in so many ways.
Having a child with a disability is not just a burden or a horrible circumstance to endure, as portrayed in brief moments in this film. It can be a life changing, positive, self-actualizing experience. Just yesterday I saw an old student of mine that I hadn't seen since pre-Quinn days. It was so nice to catch up with her. I was talking to her about a psychopathology course that I was teaching this fall. I told her how I am having the students read The Short Bus by Jonathan Mooney because in addition to learning about diagnoses, I want them to learn about sensitivity. What good is one without the other? We need to include both in such a course. She looked at me and said something to the effect that she can see that Quinn has impacted me for the better. There was something beautiful in her eyes at that moment, like she really saw this in me and respected the blessing of that and of this little girl. I felt peace in my heart knowing that this little girl will have an impact on so many future clinicians in the field (that is, if the students listen to me). I am not stuck with her - I was made better by her.
The options in this journey is to either let the experience destroy you/turn you into someone you aren't proud of (Peck's option) OR use it to better yourself, to learn, to experience a whole new world. I choose Quinn and the latter.
-Karyn
Future
The future is a big unknown for me when it comes to Quinn. Most of the time, I just try not to think about it. I try to stay in the here and now and avoid any thoughts about what will be her life in the future. I think it is in the future where most of the thoughts and assumptions that I had way back when about individuals with disabilities seep in. It is the point where I am most vulnerable to the stereotypes and assumptions.
But these are the things that I do know. In the future, Quinn will...
Have style!
Be happy!
And define herself!
Things like the following clip make me happy when I see the happiness on these young adults' faces.
But these are the things that I do know. In the future, Quinn will...
Have style!
Be happy!
And define herself!
Things like the following clip make me happy when I see the happiness on these young adults' faces.
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