tag:blogger.com,1999:blog-80246989048282959312023-11-16T00:14:52.478-06:00QUINN'S CRUSADERSThis blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome, and this blog is for awareness and advocacy for families with children with special needs.Karynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.comBlogger343125tag:blogger.com,1999:blog-8024698904828295931.post-85468131202187038152012-01-01T08:05:00.004-06:002012-01-01T08:15:25.175-06:00How a Girl Celebrates New Year's Eve<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilTosqjwaLxxa-RNxKlYQmIPUTPsznfQIlyvCYJ6DWv9WFUrX3usH-FzXJTVNnzSG-WxmoLyS78Wn1oOiw4WaGQ16O7RGkiEhAwyxeXtExTYouet-AMjyqX9whLW1oJ9soaUdGCwvvqrRi/s1600/Picture+374.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilTosqjwaLxxa-RNxKlYQmIPUTPsznfQIlyvCYJ6DWv9WFUrX3usH-FzXJTVNnzSG-WxmoLyS78Wn1oOiw4WaGQ16O7RGkiEhAwyxeXtExTYouet-AMjyqX9whLW1oJ9soaUdGCwvvqrRi/s400/Picture+374.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5692666974668154770" /></a><br />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!<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com13tag:blogger.com,1999:blog-8024698904828295931.post-59279493745000772672011-12-31T07:46:00.002-06:002011-12-31T07:53:10.784-06:00Goodbye 20112011 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. <br /><br />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.<br /><br />Hope everyone has a great 2012!<br /><br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com3tag:blogger.com,1999:blog-8024698904828295931.post-21999925209611490152011-09-19T22:04:00.001-05:002011-09-19T22:04:26.428-05:00What is Achievement Anyway?This is just my thoughts...my opinions...this is in no way meant to translate to others...we are all on a journey...an individual journey and this is where I am right here and now...<br /><br />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.<br /><br />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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com3tag:blogger.com,1999:blog-8024698904828295931.post-7896142737036192162011-09-18T17:06:00.002-05:002011-09-18T17:07:21.971-05:00The Blessing of DSThis is something I posted on an online forum. The question was about if you see DS as a blessing. <br /><br />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?<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com2tag:blogger.com,1999:blog-8024698904828295931.post-42668757936209426972011-09-06T21:55:00.004-05:002011-09-06T22:01:54.079-05:00You Say No to Her, and You Get a Hug and a KissI 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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-76954584788408694372011-09-05T09:48:00.002-05:002011-09-05T09:50:55.211-05:00Did You See Me in There?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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-42603921811832859722011-08-31T06:09:00.002-05:002011-09-02T05:29:50.871-05:00Up Syndrome<iframe width="560" height="345" src="http://www.youtube.com/embed/FXWaVubBSwg" frameborder="0" allowfullscreen></iframe>
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<br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com0tag:blogger.com,1999:blog-8024698904828295931.post-82785650328238400242011-08-31T05:55:00.004-05:002011-08-31T05:59:47.380-05:00The Joy of Picture Taking<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimTXlRZG4qxDK-VlN759RLGsyHl1TgUo6yxSM2If4uJI_uko-cOIV9g0eWjt6ljGR7MzOzm7RVnOGED3wq2Mj7wCVGrtnCXmDqtu3vpIXfDUTTYKENCC-e49mIDmOjOqat2DInWbx_lctx/s1600/Picture+058.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimTXlRZG4qxDK-VlN759RLGsyHl1TgUo6yxSM2If4uJI_uko-cOIV9g0eWjt6ljGR7MzOzm7RVnOGED3wq2Mj7wCVGrtnCXmDqtu3vpIXfDUTTYKENCC-e49mIDmOjOqat2DInWbx_lctx/s400/Picture+058.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5646973031728819106" /></a>
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<br />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...
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<br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-50806449230585400582011-08-30T19:47:00.003-05:002011-08-30T20:05:39.747-05:00What's the Rush?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.
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<br />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?"
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<br />That is my new mantra...WHAT IS THE RUSH?
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<br />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.
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<br />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.
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<br />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.
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<br />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?
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<br />Just why do we rush through life so much anyway? Are we rushing to something? Or away from something?
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<br />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.
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<br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com2tag:blogger.com,1999:blog-8024698904828295931.post-87599908014072468382011-06-18T07:23:00.004-05:002011-06-18T07:28:46.732-05:00My Girl<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlBThH8hWUg1Ur_qcn8fHGoPS3N55nAkNiymmiFcBbZPMCjZR_zhKkyGv8C7DdFW_GcUTwg0cpLEf_L1hYfVnUecob7r5XQtM3ZdskkqKVD6bC5SPLFbnMZRiud5G1n7UXy0FOLtYTNUQe/s1600/IMG_6685.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlBThH8hWUg1Ur_qcn8fHGoPS3N55nAkNiymmiFcBbZPMCjZR_zhKkyGv8C7DdFW_GcUTwg0cpLEf_L1hYfVnUecob7r5XQtM3ZdskkqKVD6bC5SPLFbnMZRiud5G1n7UXy0FOLtYTNUQe/s400/IMG_6685.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5619535695657371874" /></a><br />They told me that my girl had Down syndrome. I cried.<br />They told me that my girl had Infantile spasms. I cried.<br />They told me that my girl had Autism. Actually I think that was a lie, but I still cried.<br />Now I see all that my girl has accomplished.<br />Now I see my girl loving life. <br />Now I see my girl strutting her stuff.<br />Now I see my girl making jokes and chuckling like things are so funny.<br />Now I see my girl running to the door to greet me when I come home. She has a huge smile on her face.<br />All those tears just made me love her all the more.Karynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com6tag:blogger.com,1999:blog-8024698904828295931.post-48616591958819133032011-02-27T07:36:00.001-06:002011-02-27T07:36:36.863-06:00The Creed of Babies with Down Syndrome<iframe title="YouTube video player" width="480" height="390" src="http://www.youtube.com/embed/KmtURAmAkg0" frameborder="0" allowfullscreen></iframe>Karynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com6tag:blogger.com,1999:blog-8024698904828295931.post-28963864857804074842011-02-26T17:01:00.005-06:002011-02-26T17:17:44.236-06:00Deep ThoughtWhat 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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.comtag:blogger.com,1999:blog-8024698904828295931.post-63714123491052361452011-01-22T07:23:00.005-06:002011-01-22T07:35:56.470-06:00My Baby Girl<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMwPKRZA4qWwjR_OtKhXQE-748zVqd2_jEE240LXqpvij9SVuO4ryY2-Bf3uVIzl1jIFPtjewzQPyyIk-DQYYqRRQpp2CwGXWuxyNFG3aVoUciHYZ2A4P_qT-VTNgwIMHwqJpW5EG1pz6N/s1600/Picture+330.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMwPKRZA4qWwjR_OtKhXQE-748zVqd2_jEE240LXqpvij9SVuO4ryY2-Bf3uVIzl1jIFPtjewzQPyyIk-DQYYqRRQpp2CwGXWuxyNFG3aVoUciHYZ2A4P_qT-VTNgwIMHwqJpW5EG1pz6N/s400/Picture+330.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5565000762371353666" /></a><br /><br />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....<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com4tag:blogger.com,1999:blog-8024698904828295931.post-8331850281423588612010-12-31T20:57:00.002-06:002010-12-31T21:06:50.880-06:00Depraved IndifferenceI 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.<br /><br />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.<br /><br /><object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/UWHJ6-YhSYQ?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/UWHJ6-YhSYQ?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object><br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com2tag:blogger.com,1999:blog-8024698904828295931.post-52457194167094507402010-11-12T06:44:00.001-06:002010-11-12T06:45:36.438-06:00Just the Way You AreI love you Quinn, just the way you are!<br /><br /><object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/9b7y9UYt_fM?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/9b7y9UYt_fM?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object><br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com6tag:blogger.com,1999:blog-8024698904828295931.post-75572212491233083362010-10-30T20:12:00.002-05:002010-10-30T20:21:47.984-05:00IEPs Should Not Be Like Buying a CarQuinn has started early childhood classes. And she LOVES it!!! <br /><br />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). <br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-55582666511272202672010-10-24T06:14:00.004-05:002010-10-24T06:19:45.689-05:00Happiness and Sadness<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0sihuT0ssvMCYHK6Ko1RHLx9KRa2Mbu0mW55XfWE7J-YJNNliUTx7E7sRpN2cn6QJ3p9Hl-2ap8l4lLW-xt9TYnIEkeIcAn9C4JCZqCO2tHEZXU2FtiZukKv8lodLdf7U73Xq7Q_daK3A/s1600/Quinn+3+Years.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 288px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0sihuT0ssvMCYHK6Ko1RHLx9KRa2Mbu0mW55XfWE7J-YJNNliUTx7E7sRpN2cn6QJ3p9Hl-2ap8l4lLW-xt9TYnIEkeIcAn9C4JCZqCO2tHEZXU2FtiZukKv8lodLdf7U73Xq7Q_daK3A/s400/Quinn+3+Years.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5531569843181128498" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_lkeAwLxMk3IDfb6Dlv8gxO7-x1NiuKbKdlgZpfUD8yWNxECrtKp0HpnytrqDEZ8lX0dFdy0Eej8M7xt4Q_bFjqhnABxYFjym_tmPJ_W2Id7G7kglxmwHtmuo_2NJ0ofHGWVvADbmZiWx/s1600/Quinn+3+Years+(1).JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 285px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_lkeAwLxMk3IDfb6Dlv8gxO7-x1NiuKbKdlgZpfUD8yWNxECrtKp0HpnytrqDEZ8lX0dFdy0Eej8M7xt4Q_bFjqhnABxYFjym_tmPJ_W2Id7G7kglxmwHtmuo_2NJ0ofHGWVvADbmZiWx/s400/Quinn+3+Years+(1).JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5531569831014115666" /></a><br />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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com4tag:blogger.com,1999:blog-8024698904828295931.post-3302104486031085502010-09-20T06:18:00.002-05:002010-09-20T06:24:03.214-05:00Evaluation Part 1The evaluation of my daughter to find out whether she has a fourth diagnosis (i.e., Autistic Disorder) – Part 1: The parent interview:<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />But for now, I wait for part 2 of the evaluation and our results and feedback. Then I will speak my mind.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com4tag:blogger.com,1999:blog-8024698904828295931.post-33893877051277380112010-08-27T14:25:00.001-05:002010-08-27T14:26:52.059-05:00Another OneAnother 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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-19960510396388647742010-08-27T06:27:00.003-05:002010-08-27T06:42:16.596-05:00DiscriminationIt 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.<br /><br />We are investigating what it would involve to take on our own health insurance in case their are changes in the future.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-47154473338404088192010-08-27T06:23:00.002-05:002010-08-27T06:26:51.477-05:00EmpathyThe 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. :>)<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com0tag:blogger.com,1999:blog-8024698904828295931.post-30337372896826506482010-08-25T19:54:00.004-05:002010-08-25T19:56:29.320-05:00Local People<a href="http://www.saveethanallen.com/">HERE</a> may be something of interest if you want to sign it. No pressure.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com0tag:blogger.com,1999:blog-8024698904828295931.post-79789123320999002822010-08-25T18:23:00.003-05:002010-08-25T18:36:08.424-05:00The LifeguardI 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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com0tag:blogger.com,1999:blog-8024698904828295931.post-44654046321321600102010-08-13T06:03:00.004-05:002010-08-13T06:11:46.505-05:00Standing by the WindowWhen 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.<br /><br />-KarynKarynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com1tag:blogger.com,1999:blog-8024698904828295931.post-59110541750108392402010-08-10T06:45:00.003-05:002010-08-10T06:47:05.378-05:00Family Photos<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZzir5lJ7Uj5WX4Nj_7naAH9BJqNxSgwg12AWZDEjKh4RUHSRWbKqIg7omGgCSXAeBNteQrY9i5sFs8SxKPYFw2hs79YheL9fpzC2xFKBO9goMQDY9gdZkbpxIn9iBXkVtQSCBeV34gfdg/s1600/DSAW+Quinn.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 286px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZzir5lJ7Uj5WX4Nj_7naAH9BJqNxSgwg12AWZDEjKh4RUHSRWbKqIg7omGgCSXAeBNteQrY9i5sFs8SxKPYFw2hs79YheL9fpzC2xFKBO9goMQDY9gdZkbpxIn9iBXkVtQSCBeV34gfdg/s400/DSAW+Quinn.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5503746402079895186" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQXioG887XLzVZ4V_wVlydUSNb-7uOVoPKmTVeXxSnGLxppktpVhbP-K0kNwx3VAEIxgUTTtHMF5Du65UgXSK9t0ew6iQLIlJMQ2c9qefU6DopG0iCTPWUzHXtjHGu0aOnBAELVN70SzL1/s1600/DSAW+Kids.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 286px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQXioG887XLzVZ4V_wVlydUSNb-7uOVoPKmTVeXxSnGLxppktpVhbP-K0kNwx3VAEIxgUTTtHMF5Du65UgXSK9t0ew6iQLIlJMQ2c9qefU6DopG0iCTPWUzHXtjHGu0aOnBAELVN70SzL1/s400/DSAW+Kids.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5503746392580944434" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2POaT91hxqvmjhdqg9ZZKlMMQGXf_fz4mkD-W-91rloMOqWrELHzkeiBM2p0xnxodQJJaP0YbpOZSV6WyzvzQCeUgWka5H_G3EQLMdjvsvz68mwqbRDRX56rEjrekvehVVKMKnTe4CloK/s1600/DSAW+Family.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 285px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2POaT91hxqvmjhdqg9ZZKlMMQGXf_fz4mkD-W-91rloMOqWrELHzkeiBM2p0xnxodQJJaP0YbpOZSV6WyzvzQCeUgWka5H_G3EQLMdjvsvz68mwqbRDRX56rEjrekvehVVKMKnTe4CloK/s400/DSAW+Family.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5503746388749446066" /></a>Karynhttp://www.blogger.com/profile/15059392602990523961noreply@blogger.com2