tag:blogger.com,1999:blog-27329860297340643762024-02-19T02:10:58.632-05:00My son's a 'retard'!**Is the name of my blog offensive to you? I hope so, because it sure as hell offends me. And it's what I would like to scream in the face of the many clueless people who casually use 'the r-word' when talking to me - it's become such a part of the American lexicon I hear it on a daily basis. Do you GET that it is my son you are talking about? My BABY? STOP IT!
Spread the word to end the word...Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.comBlogger67125tag:blogger.com,1999:blog-2732986029734064376.post-48430932152607957832013-06-07T01:15:00.003-04:002013-06-07T09:13:11.500-04:00Dear John....Dear Blog - I laughed, I cried, you were better than "Cats."<br />
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I really really really want to keep writing, but when I show up here to do so, you're just not right for me anymore. I see what you've gone through, and how you've suffered, and how you have supported me, but it's just not right for me anymore. It's not you, it's me. No, actually, it's you. <br />
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Don't get me wrong. I'm proud of what we have been through. You've been published, you have had a lot of good to say, and you changed my life - for the better. You really did. You listened and were there for me when no one else was. You were my only outlet for my devastation and grief. <br />
AND you also caused a SHITLOAD of drama. DRA-MA! You didn't just change my life, you threw a grenade on it and exploded it into millions of insane pieces. Totes cray cray. <br />
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You gave me lots of good stories to tell my friends. Book material, frankly. But we have reached the end of our relationship. I'll still send people here, don't worry. (However I won't miss seeing the disgusting and creepy search terms that have brought some perverts to this site.) But I hope that my real followers - my true friends - follow me to my new blog, my new life, and my new happiness. I'll always have a special place in my heart for you. I may even miss you, just a little. And truly, I can't thank you enough for what you've done for me. <br />
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Follow me, follow into the next chapter, and let's leave the bitterness behind (but the sarcasm is coming with me). <br />
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<a href="http://afragilelifexamined.wordpress.com/2013/06/07/when-its-time-to-change-youve-got-to-rearrange/" target="_blank">http://afragilelifexamined.wordpress.com</a><br />
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<br />Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-16056049894553505782013-02-14T11:42:00.003-05:002013-02-15T00:35:57.176-05:00Heart's Content - This is a New Year. <span style="font-family: inherit;">Happy Valentine's Day everyone! It's a day that strikes both fear and expectations into the heart of many, whether you have a Valentine, want a Valentine, want to stab an ex-Valentine, or are greatly dreading buying for your Valentine. Or, as my friend Delia said succintly on her Facebook status today "<span style="background-color: white; color: #333333; line-height: 18px; text-align: left;">Please do not hold back on posting pictures of flowers/chocolates received today as dateless fucks such as</span><span style="background-color: white; color: #333333; line-height: 18px; text-align: left;"> myself seriously cannot get enough of them xoxo." </span></span><br />
<span style="background-color: white; color: #333333; line-height: 18px; text-align: left;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 18px; text-align: left;">After a busy and insane week, I now lazily in bed, drinking coffee, websurfing, twittering, facebooking and OD'ing on social networking, and I feel content. <u>Happy even</u>. It was a slightly over a year ago when I published the blog <a href="http://mysonsaretard.blogspot.com/2012/02/happiness.html" target="_blank">"Happiness"</a> - which to date has been my most popular blog EVER. E-V-E-R!!!! In it I wrote "</span>I have to work this whole 'happiness' thing - can't wait for the damn bluebird, have to hunt the thing down and capture it. I have to make a conscious effort to make decisions that will make me happy." (Isn't it <u>totally</u> pretentious to quote one's self? I'm such a douche.) Then I proceeded to go through 6 of the hardest months of my life while making those decisions. </span><br />
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<span style="font-family: inherit;">I chased down the fucking bluebird of happiness, though the route took me straight through zip-a-dee-do-da hell. Those things don't fly straight paths, ya know! And now, one year later, having come emerged to other side....Whew. Sigh. Relief. BLOOM! I think of the many people who supported me, loved me and encouraged me through it all...and how LUCKY I was to have such a great support system. I still truly feel so very, very lucky and blessed for the great peeps in my life. And now, this next month, a repeat to last year's - a month that looks much the same yet life is so very different. </span><br />
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<span style="font-family: inherit;">Another - our 2nd annual! - Fragile X Moms' Weekend Away this weekend! It's gonna be EPIC!!! I'm SOOOO looking forward to it - and we are no longer <a href="http://mysonsaretard.blogspot.com/2012/02/seven-strangers.html" target="_blank">"Seven Strangers"</a>, but 7 (8, 9, 10 and counting, as our group continues to grow) FRIENDS. <u>Close</u> friends who communicate and support each other daily - crying together, confiding in each other, giving each other shit. In the past year, we have continued our FXMNO (Fragile X Moms' Night Out, for those slackers who don't keep up with my blog) punctuated by more get-togethers, and as the onion layers of our personalities peel back, we have continued to get to know each other. It has been truly awesome to have these ladies become such a huge part of my life. They're my soul sisters. </span><br />
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<span style="font-family: inherit;">And in a few more weeks, I'll be heading back down to Washington DC for <a href="http://mysonsaretard.blogspot.com/2012/03/ive-joined-cult-of-fragile-x.html" target="_blank">Advocacy Day.</a> I suppose it's 'my' 2nd annual AD! Getting to see all my beloved 'national' friends, I'll also be getting the chance to meet all my 'new' virtual friends, and I'm sure I will get a chance to expand my ever-growing "Fragile X Family" with more strangers who will become family. </span><br />
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<span style="font-family: inherit;">Advocacy Day was one of the best things I did for MYSELF last year. Did I originally do it for Owen? Yes. But it became the highlight and a significant turning point of last year. While I was there, I realized I was capable, likable, accepted and that I was NOT alone. That the tentacles of Fragile X spread throughout the state and throughout the country. I had felt alone and isolated in my grief and sadness, feeling 'that no one would ever understand,' and always feeling worthless. Now, I am <u>never</u> alone, even in physical solitude, and I realize I <u>AM</u> pretty fucking awesome. </span><br />
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<span style="font-family: inherit;">So I lay here, having no idea what the future will bring. Having no 'great life plan' other than getting to summer, wearing bare feet and sundresses. (Oh, and also that whole "changing the world" thing too. But I do that daily.) </span>For now, I'm just looking forward to spending time with the people who I love, and who love me.<br />
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<span style="font-family: inherit;">I'm content in my 'now' - and I'm <u>HAPPY</u> in my now. I don't need all the answers - I don't need ANY answers - because life does not come with written guarantees. <u> This moment </u>- this moment right <b>HERE</b> - is a great one. </span><br />
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<span style="font-family: inherit;">I finally followed my gut and somehow became the person I always wanted to be- strong, independent, shameless, lovable, brutally honest and competent. My path will not always be easy, and the not-so-distant past was suck-ass, but as Emerson said "What lies behind us and what lies before us are tiny matters compared to what lies within us." </span><br />
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<span style="font-family: inherit;">I saw this song on "Glee" a few weeks ago - and it spoke to me. Watch it. Now. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">I will give the world to them. </td></tr>
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Another year you made a promise<br />
Another chance to turn it all around<br />
And do not save this for tomorrow<br />
Embrace the past and you can live for now<br />
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And I will give the world to you<br />
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<b>Speak louder than the words before you<br />And give them meaning no one else has found<br />The role we play is so important<br />We are the voices of the underground</b><br />
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And I will give the world to you<br />
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<b>Say everything you've always wanted<br />Be not afraid of who you really are<br />'Cause in the end we have each other<br />And that's at least one thing worth living for</b><br />
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And I would give the world to you<br />
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A million suns that shine upon me<br />
A million eyes you are the brightest blue<br />
Let's tear the walls down that divide us<br />
And build a statue strong enough for two<br />
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And pass it back to you<br />
And I will wait for you<br />
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'Cause I would give the world<br />
And I would give the world<br />
And I would give the world to you<br />
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This is a New Year<br />
A new beginning<br />
You made a promise<br />
You are the brightest<br />
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We are the voices<br />
This is a New Year<br />
We are the voices<br />
This is a New Year<br />
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Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-60345984720096692022013-01-28T23:14:00.001-05:002013-01-29T15:31:46.189-05:00Just Open Your Eyes. To understand that life is beautiful, you must have experience pain, seismic events, catastrophe and struggle. Then, you must go through the pain, feel it, and emerge on the other side. Forever scarred but wiser and clearer. It is then, and only then, you see true beauty.<br />
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Beauty in the love between siblings. The kindness of Bridget making a bed on the floor for Owen, because he was out of his bed, and "he likes to lay on the floor Mumma." There's a Spongebob pillow, a blanket for the base, and another blanket she had carefully laid on top of him, and he lays calmly in his floor bed that she has made for him, contentedly sucking his thumb.<br />
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Before bed, after baths and teeth brushing, wrestling the Ipad from Owen's hands, he prepares to flop on the floor and kick and scream and thrash in the detox of Ipad from his system, and I grab him, and hop into bed with Bridget. His back to my front, laying on top of me, one arm around him, his belly, and the other around B. My babies. He breathing stabilizes and slows quickly and I can feel all 50 pounds of him get heavier as he relaxes on me. My touch, relaxing, calming, my breath as his, just as we were 5 years ago when he was still inside me. My baby boy full of life changing surprises. <br />
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And my other baby, my baby girl, underneath my arm, and I'm running my fingers through her hair, fingernails against her scalp, as I slow to a stop she grabs my hand and puts it back on her head. And the three of us lay there, in a little twin bed, our breaths and bodies intertwined, as only a mother and children could be, the plastic starry sky shining above us. And there is beauty in this, this fleeting moment of childhood and love and routine. The quick deterrent of flops and meltdowns, the gathering of my childrens' bodies in my arms, as I gather the pieces of their lives, hold them together, put them back together, make them feel safe and loved and protected, as only a mother can. <br />
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The confession of loss, of love, of sadness. The admittance of wrong and the vulnerability of truth and grief. The beauty of someone baring their soul, full of amends and regrets. The glimpse of what could have been. The slow, painful grinding noise of gates closing on an old life. To know I'm not loved by some, but hated, and the beauty of truly accepting of that. The skin, once thin, is stronger through the scars, and to feel the truth hit me, and yet ricochet off instead of embedding under my skin....There is beauty in pain, because there is beauty in truth and raw emotion and acceptance.<br />
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There is beauty in watching your child struggle and make mistakes. Watching her flippant reaction and as her consequences increase, watching the burden of her decisions begin to weigh more heavily on her until she breaks, and cries, and then accepts her mistakes and learns to embrace herself, not as perfect or broken but merely as <u>herself</u>. <br />
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There is beauty when she looks at me with her eyes shining from tears and says "I don't want you to be disappointed in me Mumma. I want you to be proud." It is beautiful to watch her learn and grow in front of my eyes, in one mere day, as she realizes how her choices can impact her life and her relationships. And through this humanness, she also opens herself to ask questions about her life and her future. <br />
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She learns not to condemn herself for something that is merely a part of her - her personality, her liveliness, her openness, her confidence and lack of fear. Just as Fragile X is a part of us, and Owen, it's not wrong or bad, it just...is. And it is beauty to see that I can teach her. Teach her that 'we are who we are', and our perceived 'defects' are often nothing but our true strengths. To be 'chatty' is to be outgoing, friendly, fun, spunky and confident - now let's learn when to harness it and learn where we can let loose. And understand that regardless, she will be accepted and loved. <br />
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And it dawns on her that her consequence was a not a result of 'who she is' but her behavior. And we discuss ways to use her strengths for good, 'not evil,' and I see her grow. I see her learn, right in front of me, so <u>many</u> life lessons in a short time, and I see beauty. Beauty in my children, what I have created, and beauty in me. In what I can do, and how I respond, and how I can be both a firm and loving parent. I can see the beauty and strength in me, never more apparent than in the hard times, the difficult times, the pain-so-searing-it-will-break-you-times - and then the 'show 'em what you're made of' times. <br />
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And we lay in bed, under the stars, we three, she whispers "I love you so much Mumma. I love you as much as you love me." And we talk about the sign for infinity, a "Number 8 laying on its side," going around and around and around, never ending, and I tell her I love her more than she knows. I hug them close, and we breathe, and I recognize the beauty of this moment - a finite moment in an infinite love. Life is not easy, it is cruel and unfair and unkind, and even that is beautiful, because it reminds us of our humanity. And it rewards us with these moments, and we know amidst the pain - because of the pain -there is beauty. <br />
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Everyday. <br />
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<br />Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com6tag:blogger.com,1999:blog-2732986029734064376.post-39835449622754949692013-01-26T18:41:00.001-05:002013-01-27T14:08:59.808-05:00Post Traumatic Growth. See, told ya I'd be back soon.<br />
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I was reading the February edition of <a href="http://www.marieclaire.com/" target="_blank">Marie Claire magazine </a>and when I got to the article about <a href="http://www.marieclaire.com/world-reports/inspirational-women/falling-toward-grace" target="_blank">Karina Hollekim</a>, I started to cry. Crying in recognition of myself. Karina was a lover of extreme sports - skydiving, paragliding, BASE jumping (that's not the part where I saw myself, I don't even like standing at the top of the stairs) - and she shattered both legs during a skydiving accident. What struck me was this part of the article....<br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>"T<span style="line-height: 14px; text-align: left;">he realization and the dramatic changes that followed are hallmarks of a remarkably common psychological change called <u>post-traumatic growth</u>. The term was coined in the early '90s by psychologists Richard Tedeschi and Lawrence Calhoun, a pair of clinicians and researchers at the University of North Carolina, Charlotte, who began by surveying hundreds of people who had survived severe injuries or lost a spouse. Over and over again, the researchers heard how those terrible events had sparked changes in the victims, who reported experiencing feelings like a renewed appreciation for life, new possibilities for themselves, enhanced personal strength, improved relationships, and spiritual change. Understanding why some people experience this kind of growth has become something of a hot field in psychology. (The U.S. Army, for example, is currently conducting a large study of post-traumatic growth in combat veterans.) </span><span style="line-height: 14px; text-align: left;">The kind of personal growth Hollekim experienced requires what researchers call a "seismic event" so devastating that it compels a re-evaluation of one's core beliefs. And, in doing so, the survivor reconstructs his or her sense of self, becoming a better, wiser person in the process. You hear human-interest stories like it all the time on TV (the battle-scarred soldier who decides to devote his life to helping others, for example) and in pop culture (if he had never witnessed the death of his parents, Bruce Wayne would never have become the defender of Gotham). Growth is the archetypal hero's journey. <u>There's still pain and suffering</u>, of course — studies show that those with the worst cases of PTSD report the most growth — but it usually results in a hard-won sense of wisdom, a fuller life lived with more meaning."</span></i></span><br />
(Jim Rendon, author)<br />
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Ho-ly crap. As I therapist, I know about Post-Traumatic-Stress-Disorder - as a matter of fact, I specialize in it. But I have never, ever heard of post-traumatic growth as terminology. Sure, I was aware that it could occur, that 'what doesn't kill you makes you stronger' and all that other bullshit - I have seen clients struggle and emerge stronger - but to read that it's something REAL, it's being studied, it exists - and I suddenly realized it's happened to me. IT HAPPENED TO ME. Tears. <br />
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I like answers. I like Google. I like to understand why I do what I do and why my brain works a certain way - I like insight into behavior. This has always helped me function and survive in life, to be able to understand the people around me - it started when I was a child. Learning about behavior helps a child survive in an unpredictable environment. Gaining insight into people helps foster understanding and forgiveness. Looking into myself helps me be aware of my interactions with others, with my clients, and improves my ability to help others (a very important lesson for me has been learning when to SHUT THE FUCK UP. Still working on that one). <br />
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Seismic event - I'm pretty sure that Owen being diagnosed with Fragile X when he was just a baby, my little baby boy, qualifies. There is a blankness to the next year - a gray foggy haze of memory - of tears and grief, of suicidal thoughts, of barely being able to function. And then...I slowly started to outreach for help. One simple sentence in the Fragile X facebook room - "I don't think I can do this." Starting to write my tiny little blog, just for friends and family, but mostly it was for myself. <br />
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And then the event that turned my world upside down - my blog being published in <a href="http://www.baystateparent.com/" target="_blank">BayState Parent Magazine</a>. <br />
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It started small - I won a contest. They were giving away name stickers, about 5 different names, one of which was "Bridget" - I quickly emailed the editor and 'won' them. We messaged back and forth about them - they were reusable, adorable, and hard to find (YOU try finding things with the name "Bridget" on them). Then, within a week, I see a post on Facebook that they were looking for a kid with special needs to be a cover model. I had JUST had <a href="http://shawnashenette.com/" target="_blank">Shawna</a> take our family photos, and I figured, hey, what the heck. I TOOK A RISK. It's what I tell everyone to do - clients, friends - just take a risk. Put yourself out there. I sent the editor our family pix, a link to my blog, and a link to the <a href="http://www.fragilex.org/" target="_blank">National Fragile X Foundation. </a> Within days she called and said "Kathleen - we want to put Owen on the cover. And....we want to publish your blog." And I took another risk, and said yes. Put my whole life out there, to be seen and judged. It wasn't easy, folks, and we all know I was pretty upset when the <a href="http://mysonsaretard.blogspot.com/2011/11/backlash.html" target="_blank">negative letters to the editor</a> came rolling in. But I was weaker then, more insecure, more scared. More thin-skinned. <br />
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I took a risk, and the risk paid off. Becoming published and then becoming a regular freelance writer for BayState Parent. Joining the DCF board. Posting in the FX facebook group and becoming part of a group of local FX Moms. Going to DC and advocating for Owen - and then becoming part of a national group of FX friends. Going to the International Conference in Miami, gaining INTERNATIONAL friends, being interviewed on camera for the Foundation. Going to California and meeting with world renowned experts in Fragile X. Quitting my job, leaving my marriage. Risk after risk after risk. Much of that wasn't easy, and I often fucked it up. Twas not a 'smooth transition' shall we say. Some parts were excruciatingly painful, and others were beyond stressful. Obviously, some both, and much of it sucked - big time. But they paid off. It all paid off. <br />
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I love writing, and I love interviewing for my articles. I'm probably the chattiest interviewer EVAH. I was at Wheelock College Theater on Friday for my next article, meeting with professors of education and the producer of the theater. We talked for two hours about disabilities, 'abilities,' education, theater - and at the end of the interview the producer said to me "I've been interviewed many times through my years at the theater. But this interview was like one I've never experienced." And then they asked me to come back and speak to their classes. <br />
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With Owen's diagnosis, I saw nothing but doors closing and my life ending. And yet, since then, <u>so many more doors</u> - vital ones, important ones, ONES THAT MATTER - opened. And I realize "THERE IS MORE FOR ME OUT THERE." I can FEEL it. Feel it in my bones. There is more for me.<br />
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Yes, there is a part of me that feels very guilty. Feels guilty that my little boy had to have Fragile X so that <u>my</u> life could become better. It sometimes feels as if *someone* was saying "Fine, if you won't change your life, I will." I'm not sure if life is pre-determined, but it can feel that if you don't bend to its will, it will <u>make</u> you bend. And you can bend until you break, or you can be like a birch tree -<br />
<span style="font-family: Times, Times New Roman, serif;"><span style="line-height: 14px; text-align: left;"><i>"T</i></span></span><i><span style="font-family: Arial, Verdana, sans-serif; font-size: 14px;">he birch is highly adaptive and able to sustain harsh conditions with casual indifference. Proof of this adaptability is seen in its easy and eager ability to repopulate areas damaged by forest fires or clearings. Bright and beautiful, the birch is a pioneer, </span><b style="font-family: Arial, Verdana, sans-serif; font-size: 14px;">courageously taking root</b><span style="font-family: Arial, Verdana, sans-serif; font-size: 14px;"> </span><span style="font-family: Arial, Verdana, sans-serif; font-size: 14px;">and starting anew to revive the landscape where no other would before."</span></i><br />
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The kids' godfather said to me a few weeks ago "You're so much more competent than you were 3 years ago." Post traumatic gr<span style="font-family: Times, Times New Roman, serif;">owth. "<b>R</b><span style="line-height: 14px; text-align: left;"><b>enewed appreciation for life, new possibilities for themselves, enhanced personal strength, improved relationships, and spiritual change.</b>"</span><span style="line-height: 14px; text-align: left;"> </span></span><br />
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TAKE RISKS. TAKE THEM. It's ok to be afraid, it's <u>normal</u> to be afraid, and sometimes, yes, you will fall flat on your face. <u>But without risks there is no growth.</u> I always say to my clients that love is a risk. Fine, don't take the risk, and you won't get hurt. But without risk - and without love - there are no rewards, either. Take risks, be like the birch tree, and allow your life to grow from trauma - it will, I promise you, it will. <br />
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<span style="border: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; line-height: 14px; outline: 0px; text-align: left; vertical-align: baseline;"><br /></span><span style="border: 0px; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px; line-height: 14px; outline: 0px; text-align: left; vertical-align: baseline;"><br /></span>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com2tag:blogger.com,1999:blog-2732986029734064376.post-35012660793828524432013-01-21T14:34:00.000-05:002013-01-23T09:32:41.918-05:00Stop with you and all that fucking procrastinating. Yes, I know, I know. I'm a horrible blogger. I'm a bad girl. Please, hit me in the nose with a newspaper. I have been TOTALLY (one of my favorite words, not to mention favorite to emphasize as if 14 year old girl) neglecting this blog. It's one of those things that languishes on my 'to-do' list, and runs on the hamster wheel of 'shoulds' in my brain...should write more, should be better, should clean, should walk the dogs, should write thank you notes and return those calls and should....be more perfect-er. (Hey, it's MY neglected blog, I can make up all the fake words I want OHHHKAY?). <br />
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Something significant and momentous has changed in my life - I. Have. WIFI. WIFI!! Oh my lordie it is the best thing EVAHHH and I love it more than my kids. Kidding! I love wifi equally to my kids. I love to lounge in bed after throwing the kids in the bus, browsing my laptop and drinking coffee. Frankly, I've thought many times about bringing the coffee machine upstairs to put on my bedside table BECAUSE THEN I WON'T HAVE TO MOVE FROM BED. Ahhhh, that is my idea of heaven. So thank you BJ Hill and your amazing technological skills, because in your purely nerdy IT way you have improved my life. Watching Netflix, surfing the web, reading books and magazines, on-line porn, sighhh. Heaven. So now, NOW - I really have no reason not to write. Except I'm a busy single mom of two kids and a business owner, with about 17 volunteer jobs and I'm...well...lazy. THAT'S RIGHT I SAID IT. I procrastinate writing, perhaps because I expect or need it to be some deep philosophical bullshit that makes my peeps both laugh and cry. I LOVE when people tell me it makes them cry. So I think I procrastinate because I worry it won't be stellar and emotional, I laughed, I cried, it was better than 'Cats.' Procrastinators are perfectionists. Like right now - my kids are hungry and I'm procrastinating cooking them breakfast. Oh wait, that's lazy. Well that and I neeeed moooore cofffffeeee. Bring the pot UP!<br />
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An update about the fam...Owen is doing well. Much better, actually. What I did NOT disclose in the blog was that he was increasing aggressive in the fall. Fragile X is characterized by symptoms of 'hyperarousal' and 'overstimulation.' It's comparable to when you go to Chuck-E-Cheese and within an hour (or less) have a huge headache due to all the sounds, kids running and screaming, and gunfights. That is how <u>every day</u> is for a kid with Fragile X. Anything that is transitional or out of schedule - even the TV or his sister being loud - can overwhelm Owen. Getting on the bus. Walking through a doorway. He reacts with the 'fight or flight' mechanism - escape or flailing or flopping (falls to the ground, stays on ground rag-doll style). So if the TV is on really high AND Bridget is non-stop talking, and she gets too close to him, he would 'swipe' (like an off-the-mark slap) or hit her. <br />
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I was starting to see it more and more, and she was his main target. I can deal with a lot, but I have NEVER ever been a fan of violence or aggression, including in my counseling work. I've always told parents to <u>never </u>allow it, including from young 2 or 3 year olds. Nip it in the bud, folks. So when he started to hit her, often, I was upset. Very upset. Devastated even. And it felt like 'nothing worked.' Addressing negative behaviors often reinforces them, so I was struggling with how to decrease it. He was swiping at his bus driver in the morning, or other kids on the bus, or his teachers and friends at school-ugh. Not just upsetting, but scary as his mom - how would this bode for the future?<br />
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I called <a href="http://www.childrenshospital.org/" target="_blank">Boston Children's Hospital</a> and insisted on an appointment with his developmental pediatrician. They attempted to blow me off for another month because that is when his typical 6 month appointment would be, but you know me. So within a week we were in there, and I knew exactly what I wanted. Zoloft. Noooo, not for me silly (I have beer) but for Owen. Anxiety is one of the main reasons for the hyperarousal and overstimulation symptoms (which are technically more complicated and related to scientific stuff, like lack of production of a the FMRP protein myself). Many kids with Fragile X are on an SSRI (otherwise know as anti-depressants) like Zoloft or Prozac; they also help reduce anxiety. There is a study going on right now at the <a href="http://www.ucdmc.ucdavis.edu/mindinstitute/" target="_blank">MIND Institute</a> by <a href="http://www.ucdmc.ucdavis.edu/mindinstitute/research/fragilex/index.html" target="_blank">Dr. Randi Hagerman about the usefulness of Zoloft,</a> so that is the drug I wanted him on. <br />
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Thankfully, our developmental pediatrician, <a href="http://www.childrenshospital.org/cfapps/research/data_admin/Site120/mainpageS120P0.html" target="_blank">Dr. Rappaport</a>, loves me. He's told me many times I am a 'great advocate' for Owen, and he somehow even trusts my judgment. <u>Even though</u> I have been known to argue with him at times, which has been pointed out to me by the kids' dad "You will even argue with the HEAD and CHIEF of developmental medicine at CHILDREN'S HOSPITAL" (what, I'm smarter than EVERYONE!!). I asked Dr. R during this visit if I was a pain in his ass - and he looked at me surprisingly and said "Have I ever said that to you? No, I think you are a phenomenal advocate for him!" (Did you hear that beep? That was me tooting my own horn). Plus Dr. R knows I'm smarter.<br />
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We started O on the Zoloft. First a tiny little bit at first, .05 mls. I don't even know what that it - 10 micrograms I think? Then, after a month, we went up to 1 ml. It. Has. Been. Fabulous. Transisiton are soooo much smoother, aggression/swiping has significantly decreased, his behavior has improved. It's been awesome. Throw in our new Ipad and I can take the kid anywhere now. Even grocery shopping with them both has been easy - the magical formula is a car cart, iPad, and stolen apple (stolen because by the time we get to the checkout it's allll gone. Sorry Price Chopper, we are thieves.)<br />
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Another very exciting update is POTTY TRAINING. If you've every had to change the diaper of a 50 pound boy, you'll feel me on this one. It ain't pretty. He's been FULLY potty trained at school for about 2 plus months, but at home, naaah, he's got a sucker of a mother to take care of that for him. At our monthly clinic meeting in December his teachers yelled at me (or questioned and encouraged me) to get on the ball. Finally, over winter break I used the Ipad as a reward and BOOM. That was it. Potty trained all day long. Course, he's naked all day long, as anyone who visits my house or even sees my pix on facebook can attest to, but hey, whatever. As long as he's peeing in the toilet and not the linoleum I don't care WHAT he's wearing. Or not wearing.<br />
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We also just finished up our MIND study this month. After 5 months of Cali visits, we had 3 months of follow-up Skyping and ongoing monitoring. I thought I would be happy when it ended - it's been so very very helpful, has taught me so many skills to help his language and behavior, but was also a part time job - but I was soooo sad when it ended. These people, our 'girls' - Ashley, Monica, and the head researcher Andy - have been in our lives for 9 months. They have seen us at our worst. They have guided me through tough times, not judged, and been supportive and caring. I KNOW they genuinely care about us. So at the end of our last Skype session, saying goodbye, trying to express to them how they have helped us - I choked up. Welled with tears even, dammit. The Fragile X community - both families and professionals - is so small, and also so supportive. They GET it like no one else does. Losing my research peeps was a loss. They reassured me that they are ALWAYS there for us, in anything we may need, ever (I sound like a Taylor Swift song at times, with all my always, nevers, and never evers) and I believe them. THAT is the beauty of our Fragile X community - you are a call, keystroke or text away from people who are there to help you, both friends and professionals. <br />
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The <a href="http://www.fragilex.org/" target="_blank">National Fragile X Foundation</a> is releasing a series of videos called "Forward Thinking."And yep, I have my 'own' video coming out in February (fame whore), but please, please check out this compilation video, which includes myself and many of the great friends I have made along the way. <br />
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It reflects the closeness of our community, our commitment to progress, and our positive thinking. <br />
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<span style="background-color: white; color: #333333; font-family: arial, sans-serif; font-size: 13px; line-height: 17px;">From the NFXF - "Forward Thinking is a video series of interviews with parents and others that we conducted at last summer's International Fragile X Conference. Members of the Fragile X community all over the world have found them deeply moving and inspirational, so we are pleased to present to you our 2013 video series with this compilation of the faces and voices you will see and hear as the year progresses." </span><br />
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I hope all my friends and readers had a fantastic holiday season, and I have made the 'resolution' to myself to WRITE MORE. Recommit to myself, my blog and my writing. So I promise to check in more, update more, and BE HERE MORE in 2013. Life is good, kids are good, and I am good. All I need is to read <a href="http://mysonsaretard.blogspot.com/2012/01/january-icy-tundra-of-frozen-emotional.html" target="_blank">last year's January blog</a> to appreciate how far I have come and how much my life has improved. <br />
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Last year I printed out this quote, hung it on my bedroom mirror, and held desperately to it....<br />
<b>"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." </b><br />
(Elizabeth Edwards)<br />
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This year my dear OLD friend Earle Collins quoted to me <b>'There are years that ask questions, and years that answer them." </b><br />
(Zora Neale Hurston, from "Their eyes were watching God") <br />
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I've adjusted my sails, and this year, I'm looking for answers. <br />
Thanks for staying tuned and bearing with me, folks. I'll see you around the blogosphere. xoxoxo<br />
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<tr><td class="tr-caption" style="text-align: center;">Shawna Shenette Photography</td></tr>
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<br />Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com8tag:blogger.com,1999:blog-2732986029734064376.post-41812496452001470282012-12-17T15:18:00.000-05:002012-12-17T16:30:49.500-05:00Searching for Meaning, Where There is None. Why. The question everyone wants answered is "Why did this happen? HOW did this happen?" We all want someone or something to blame - we want answers. As humans, we crave answers to make us feel safe in our world. Somehow, if we can understand something, we feel like we can also prevent it. Do we need stricter gun control? Should we arm our teachers? Is this a failure on the part of the mental health system? Or parents? Is it the media for sensationalizing violence while also densensitizing us to it? WHO is to blame? We need to point fingers. We need explanations. We need understanding.<br />
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Through it all, I have understood. I have understood that I will never understand. As a therapist who specializes in the areas of grief, trauma and abuse, I learned a long time ago that evil exists. Evil exists inside people, people who you know, people who you see everyday, people who are related to you and are supposed to love you and care for you. I have looked into the faces of innocent children, and seen in their eyes the harm of evil. I have met face to face with abusers and pedophiles.<br />
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I have held my clients as they wept in my arms. A 5 year old, raped by a gun, by people her drug abusing parents allowed in the house. A teenager, raped by a friend. An adult, raped for years by her father, and sacrificing herself to protect her younger sister. I have heard stories of children being sexually abused and raped by their own parents. Being prostituted, being 'shared' by their parents' friends. Stories of clients being raped while hearing their siblings raped in other rooms in the house at the same time. Stories of physical abuse, emotional abuse....I used to specialize in sexual abuse of preschoolers. Tiny little children used in sex games by their day care providers. They would draw pictures of their abusers in cages, in rocket ships, and we would send them to the moon, and rip up the pictures of them. Recently a man in Wakefield Massachusetts was charged on a hundred counts of sexual assault and rape. A hundred. One of the many, an 8 day old baby, raped. Yes, I have seen evil. I know evil. It is part of my job, every day. <br />
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So I thought I would be prepared to walk into my daughter's school today for my weekly library duty. My library class is a 2nd grade, not my daughter's class, but a class filled with her friends who I have known since kindergarten. They were running late and I walked down the hall to check on them - had they forgotten me? Was there a change in schedule? It's pajama day, and all the kids and teachers were in their 'jamas. The teacher was reading a chapter book to the kids, and said "Thanks for checking in on us! We will be right there!" I walked back to the library to wait for them, and was holding back tears, which is surprising for a stone-cold-Irish-bitch like myself. The hallways echoed with the sound of children's voices and laughter, kids in the cafeteria eating, my own daughter in her gym class. I saw teachers walk by each other and touch - a shoulder, a hand - I saw my daughter's teacher give a quick pat to the school secretary as she walked by. The kids were the same, but I could see it in the teachers. I held back my tears. <br />
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After my class left the library, and I was re-shelving books, I thought 'What would I do? What if I was here and that happened? Would I run to my daughter? Stay put? What if we then both died and left my son without either of us?' I think of the beautiful 27 year old teacher, Victoria Soto - and I have thought of her often - cramming her kids into cabinets and closets - and I think of my daughter's class - they don't have cabinets or closets. That beautiful young girl - thinking of her students, putting them first - having the wherewithal in a crisis to hide her kids and then lie and say they were in gym, only to be gunned down. Sacrificed herself for her sweet students. What would I do?<br />
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I left the school, signing out, saying good bye to the principal and the secretary, who runs the school with an iron fist. Just last week she had yelled at me for not stopping in the office when I went to the nurse's office to grab my (faking) sick kid. I'll be back on Thursday, helping my daughter's class decorate their gingerbread houses. I'll be in her classroom. What would I do......<br />
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I've seen the face of evil. I've seen the aftermath of evil, everyday. I thought I was hardened, I thought that 'knowing' there are no answers, no easy answers, would somehow protect me. But walking through the elementary school today, grades K-5....I cracked. <br />
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It's Monday, and the ground is covered in ice. The blades of grass, branches of trees, walkways and stairs - all coated in a thin sheet of ice. 2 hour delay for students, and then the buses came, and took the children to school, driving carefully through the icy streets. <br />
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I have been thinking of the movie "Natural Born Killers" often this weekend - actually a favorite movie of mine. A serial killing couple become revered in our country, a statement of how the media sensationalizes violence. Thinking about 'Grand Theft Auto' video game, where you earn extra points by killing the prostitute. Thinking about my 7 year old neighbor, who spent Halloween watching rated R horror movies. Thinking about my own son, so prone to aggression since September, his main target being his loving sister. What would I do......<br />
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As much as we all want to feel safe in our homes, our schools, and our families, we need to acknowledge that there are no easy answers and there are no quick fixes. "God wasn't there, 'he' didn't prevent it" or the reverse "Everything happens for a reason, God has a plan." I don't buy either of those.<br />
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All I know is that there is something very, very wrong in our country. I'm just not sure what it is. <br />
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<tr><td class="tr-caption" style="text-align: center;">Photo, as always, by Shawna Shenette Photography</td></tr>
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<br />Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com2tag:blogger.com,1999:blog-2732986029734064376.post-18340213927332734672012-11-02T13:10:00.001-04:002012-11-02T13:12:34.835-04:00Love and Marriage<div class="separator" style="clear: both; text-align: center;">
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Included in this months <a href="http://www.baystateparent.com/find-a-copy/the-archives/November-2012-176780271.html" target="_blank">Bay State Parent Magazine</a> is an article by yours truly entitled "Marriage: A Casualty of Living with Special Needs - OR NOT?" It includes statistics, resources, and interviews with the fabulous Hamburger and Jackson families, both of whom are local families and ones I consider friends. I also briefly cover 'my own story' - it's a family magazine people, gotta keep it 'Rated G'. And to also respect the privacy of 'others' (cough cough). <br />
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Click on the link here <a href="http://issuu.com/baystateparent/docs/1112bsp" target="_blank">http://issuu.com/baystateparent/docs/1112bsp</a> to read. You must flip through the on-line magazine to get to it, it is on page 30!!!<br />
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Included is a family photo (the same as the one on my blog) by the always phenomenal, patient and talented photographer <a href="http://shawnashenette.com/" target="_blank">Shawna Shenette.</a> She is a freakin miracle worker. Owen was a NIGHTMARE during the shoot (really, I just scheduled it for Christmas cards and it bizarrely coincided with my editor's request for that article - she REQUESTED I write it, let me add, I didn't volunteer that topic!). He was crying, kicking, resisting - a total nightmare - and yet somehow he (sorta, barely) calmed down and of course Shawna got SEVERAL phenomenal shots! An hour after the shoot, we were out to dinner with his godparents, and Auntie Jenny pointed out he didn't look too hot - he was BURNING UP with fever! Within 48 hours he had been diagnosed with strep. NO WONDER he was such misery! So in that picture that is included - is my little boy burning up with fever, yet still smiling. Love him. And of course, my always outgoing and dramatic B- when I told her we would have another picture in BayState Parent she replied, "AGAIN?" Oh yes B, big sigh, fame, don't give me your false protestations! She's quite the little character. <br />
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And let me add I just love this photo of me and the kids - summarizes us perfectly - B's flair for the dramatic, Owen snuggling into me, me kissing him, and my arms wrapped protectively around both. My munchkins, my blessings, my everything. Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-83648624672907207912012-10-23T22:56:00.001-04:002012-10-23T23:26:00.644-04:00Tomorrow will be alright. It's an FX takeover week! This past weekend I spent in lovely Connecticut, watching the fabulous <a href="http://marciabraden.com/" target="_blank">Dr. Marcia Braden</a> speak at the <a href="http://www.fragilex.org/community/links-support-network/fragile-x-society-of-connecticut/" target="_blank">Fragile X Society of Connecticut</a> annual conference. Tomorrow, I am departing for our 5th and final trip to California at the MIND Institute of UC Davis to complete our 'Parent Mediated Language Study' - where they will be assessing and measuring us to see how well their pilot study 'worked.' While there, we will be meeting with the world famous <a href="http://www.ucdmc.ucdavis.edu/search/faculty/biodetail.asp?bioid=615" target="_blank">Dr. Randi Hagerman </a> for a little 'extra extra' evaluation (per this mom's request). I won't even mention how next month I have another article in <a href="http://www.baystateparent.com/" target="_blank">BayState Parent Magazine</a> about - of all issues - marriage and raising kids with special needs! My editor is HILARIOUS, isn't she! Including a tidbit of 'my own personal story' - along with interviews, research and resources, and including more picture of families - including one of my own by my own 'personal' photographer <a href="http://shawnashenette.com/tag/shawna-shenette-photography/" target="_blank">Shawna Shenette</a> (See our new family photo on my blog? Yep, Shawna. She is unbelievable. Call her.). So yeah - it has become a Fragile X takeover-my-life-week. I'm exhausted and I haven't even hit the airport yet. <br />
I realized today that we will have traveled to Cali a total of 5 times - two planes per day - which equalsa total of 20 planes we will have traveled on by Friday! WHEW! The flights are already starting to merge together in my brain - tomorrow is American Airlines - is that the one that has a movie? I can't remember. Two flights ago we almost missed our flight - literally boarded at 8:28am for an 8:30 departure - we've faced extended layovers, delays, broken planes, frost on wings, little creatures climbing on wings - I can barely remember one from the other at this point. <br />
So yes, Fragile X has taken over my life this week. I usually DO NOT like that. It's fine if it's PART of my life, but I'm not a huge fan of it BECOMING my life. Yes, I'm involved. I do advocacy and conferences and FXMoms' Nights Out. Oh and this blog. So YES, a big part, but not ALL.<br />
I text some of my FX moms daily, others message on Facebook daily, and still others post in our super uber private magnificent Facebook room daily. Take-over? No. A huge part? Yes. But I still have work, writing for BSP, my friends from high school, college, work friends, my dining club, the local restaurant near where I work - when I enter they yell "NORM!!!" I like to surround myself with all kinds of peeps. I like to have a big support system (it takes a village to raise a me.). I like to do all sorts of other 'stuff.' I like to not dwell on past issues (I know, maybe you wouldn't know it from this blog) but I want to live in TODAY and prepare for TOMORROW, not wallow in yesterday and what couldawouldashoulda. Focus on the positive. Yep, that's what I prefer to do.<br />
But this week? We have had the takeover. Conference, last Cali trip, even my article coming out next week - a little tiiiiiiny bit of the FX life takeover. It can annoy me, frustrate me - maybe because it makes me sad. Sad to go to a conference and hear about the struggles, watch videos of 'worst case' kids, fear 'will that be me?' Sad to watch the videos and how much the kids struggle to do things that 'typical' kids do so easily - like walk over thresholds, get off the bus, interact with other kids. Sad that I have to 'go' to California at all - that my son's speech - his development- is so delayed that I would - that I HAVE to - do ANYTHING to help. And sad that I wrote an article where I'm not the 'success story' but rather the 80-90 percent that 'failed' at marriage. And I also had his monthly school clinic this week. He's fully potty trained THERE, but they are concerned because 'it takes him so long to adapt to transitions (learned about that at the FX Conn conference) that he isn't getting much 'schoolwork' done - and very little pre-math skills. Sigh. <br />
Sad that it is a week of reminders of what we are up against. I don't like to dwell on the negative, or the past, but sometimes...sometimes when it's late at night, and I'm procrastinating packing, and I have to be up at 4:30am to leave on a 7:30 flight, to meet with a bunch of experts and be research guinea pigs, and then to fly home 36 hours later - I'm just drained. I'm already tired. I want to get back to my regular life, my regular schedule, and just be normal. I mean, I'm not normal (insert bad joke here funny friends!) and that's OK, but I want my abnormally normal life back. Arriving Friday night at 93pm into Logan, I will have it. But damn if tonight I'm not a little sad, and tired, and grumpy. <br />
So I'll drink a Blue Moon, eat a PopTart, and complain to you peeps. And next week I'll be back with my big girl panties on, and I'll tell you how pheeeeeeenomenal our visit was, and how they helped, and how I'll miss them. I'm also hooking up with the awesome Kay sistahhh Michelle - our rooms are next to each other (we DEMANDED that the researchers overlap our visits) so I'll get to see ANOTHER one of my 'national' FX mom friends! I'll also brag about my article and our awesome family photo in the November issue. <br />
But tonight dammit, I'll bitch, I'll whine - because I'm allowed. Because even the strongest get tired of fighting. And as I tell EVERYONE - you are allowed moments of weakness. You are allowed moments of grief. It's OK, it's normal, and it's necessary. I've gotta practice what I preach. A moment of sadness....and tomorrow - I'll do whatever I have to do for my kid, because that is what us moms do. Anything. And I can't stand wallowing in crap. It stinks in here. Can someone grab me a Yankee Candle?<br />
Plus - I'm procrastinating packing. Maybe I'll finish tomorrow after I throw on my big girl undies. Yawn.Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-60753194102937873862012-10-12T16:27:00.000-04:002012-10-12T16:50:38.255-04:00How I Confound You and Astound YouSo, I lied. Well, accidentally. I reported that Owen has about 30 signs and words. I was way, way, WAY wrong. The MIND Institute has yelled at me numerous times because as they watch us interact Owen will suddenly bust out with so many signs that he looks like a baseball player, while I stare confusedly at him. "You NEED to know what he is saying!" the MIND researchers reprimand. I KNOW, I KNOW. His school teachers sign a ton with him, and his inclusion teacher is a signing maniac. So at our last school clinic meeting, I asked them to keep a list of all his verbal words and signs. They sent this home a week ago....<br />
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Yeah, I'm the worst mom evahhhh. I was aware of about 20 of these signs, and 6-7 words. I also added "airplane and motorcycle" to the signs and "YEAH!" to the words. He knows WAY MORE than I thought he knew! Holy crapola!<br />
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I've been reading several posts in the Facebook Fragile X rooms lately from parents of newly diagnosed children, grieving and devastated. I feel for them - I WAS them not so long ago. And I have realized how living with the diagnosis is SO different than receiving it. You see your beautiful young baby and fear what they will 'turn into,' fear that they will become a 'monster,' fear what they will 'never be.' I know I did.<br />
But when you LIVE with the diagnosis, day after month after year, and watch them grow - they never fail to surprise you. Astound you. Charm the surliest of people. Do things you had no idea they were capable of. And absolutely, totally, crack you the hell up. <br />
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Bridget and I were talking about Fragile X this week, and people who have "drops" of it (me) and "more" of it (Owen). Bridget asked "Does Dad have it?" and I replied "B, it's kind of rare. I don't know anyone in our town or area who has it!" And she replied "WOW, we are LUCKY!" I repeated questioningly "Lucky?" And she said "Yes, Owen has A LOT! We are LUCKY!" <br />
We have Fragile X in my house. And we are lucky. <br />
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"Doctors have come from distant cities<br />
Just to see me<br />
Stand over my bed<br />
Disbelieving what they're seeing<br />
<br />
They say I must be one of the wonders<br />
Of god's own creation<br />
And as far as they can see they can offer<br />
No explanation<br />
<br />
Newspapers ask intimate questions<br />
Want confessions<br />
They reach into my head<br />
To steal the glory of my story<br />
<br />
They say I must be one of the wonders<br />
Of god's own creation<br />
And as far as they can see they can offer<br />
No explanation<br />
<br />
O, I believe<br />
Fate smiled and destiny<br />
Laughed as she came to my cradle<br />
Know this child will be able<br />
Laughed as my body she lifted<br />
Know this child will be gifted<br />
With love, with patience and with faith<br />
She'll make her way<br />
<br />
People see me<br />
I'm a challenge to your balance<br />
I'm over your heads<br />
How I confound you and astound you<br />
To know I must be one of the wonders<br />
Of god's own creation<br />
And as far as you can see you can offer me<br />
No explanation<br />
<br />
O, I believe<br />
Fate smiled and destiny<br />
Laughed as she came to my cradle<br />
Know this child will be able<br />
Laughed as she came to my mother<br />
Know this child will not suffer<br />
Laughed as my body she lifted<br />
Know this child will be gifted<br />
With love, with patience and with faith<br />
She'll make her way"</div>
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Natalie Merchant, "Wonder"<br />
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Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-46467596577044867732012-10-03T16:45:00.001-04:002012-10-21T22:03:34.862-04:00Welcome to the Hotel CaliforniaFINALLY! Here it is folks! The much anticipated blog about our trips to California and our research study.<br />
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<tr><td class="tr-caption" style="text-align: center;">DVD player + headphones = very necessary</td></tr>
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Ironically, my FX friends and myself often refer to the "World of Fragile X" AS the "Hotel California" - you can check in anytime you like, but you can NEVER LEAVE. However, while in California, we have been staying in a Marriot Courtyard Hotel on Y street, an actual 'Hotel Cali', a small hotel tucked away in the huge medical complex that the MIND Institute of UC Davis is nestled in. The medical complex contains not only schools of medicine and nursing, but a larger medical complex and Shriners' Hospital. Basically, we are in 'nowhere Sacramento' on an enormous medical complex - so no, we haven't seen any 'sights' or gone anywhere. Insert sad face here. <br />
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<tr><td class="tr-caption" style="text-align: center;">Cheezits+Elmo=Heaven</td></tr>
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We fly in on one day, spend the next day at the MIND Institute, and then fly home the next. By this point, 4 Cali trips under our belt, O is quite the traveler. And by trip 4 I had finally figured out a perfect packing system. A bag of snacks, a DVD player, and a bunch of Spongebob DVDs and we are good.to.go. He'll sign "airplane" and "swim" (as in "I want to go on an airplane and go swimming! "Yes O, we are going again soon.") Yes, it's a lot of traveling for a one day visit (we are only at the MIND for 3 hours per visit, actually). We spend the rest of our time at the pool swimming, which is O's favorite part of the trip.<br />
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">"<span class="Apple-style-span" style="line-height: 14px;">The UC Davis MIND Institute (</span><span class="Apple-style-span" style="line-height: 14px;"><em style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Medical Investigation of Neurodevelopmental Disorders</em></span><span class="Apple-style-span" style="line-height: 14px;">) is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cure of neurodevelopmental disorders." And their mission is "To find effective treatment and cures for autism and other neurodevelopmental disorders." </span></span></blockquote>
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<tr><td class="tr-caption" style="text-align: center;">Running around outside the MIND during a break.</td></tr>
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Owen and I are participating in the "Parent Mediated Language Study," which essentially means they are working with me to change the way I speak and interact with him, to enhance and improve his verbal skills<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif; line-height: 14px;">. Our first visit was 5 days long and we were both assessed - he for his language and play skills, </span>me for my cognition. (I don't KNOW which picture comes next in that pattern! Are these riddles? Huh? Is it possible for me to flunk this?) I have received training and coaching from the Fragile X staff on changing my language and behavioral interactions with him. My education has been built and enhanced with each trip. I am the 'lab rat,' the subject of the study, while Owen ('s verbal skills) are the measure of my 'success.' I send in a video 'routine' once a week that I receive written feedback on, and Skype with them an hour a week while I play with Owen and they again coach and give me feedback on our interactions. Participating in this study has improved my ability to parent him, and has fo sho improved his language and behavior. It's been a godsend.<br />
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<tr><td class="tr-caption" style="text-align: center;">Running the controls in the 'observation room' - we are usually on the other side of the big window. </td></tr>
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Owen is considered 'non verbal.' He has about 30-40 words and signs he uses to communicate. For example, this morning he responded verbally "Hi!" to my "Hi Owen!" Then he said 'Bob!" to watch Spongebob, then signed "Me" "Eat." When I asked him what he wanted for breakfast, he signed "Cheese" while also saying "Chzzzzz." While I was getting him dressed, he signed "All done" (as in "You may not be all done dressing me, but I AM all done with you dressing me!") and then said "NOOOOO" as I brushed his long luscious blonde hair. He also loves screaming "BUUUUUUUS" when the big yellow bus arrives to get the older kids (he does so because, well, they do it also). He'll say "Bye!" when getting on the bus and his new thing has then been signing 'Daddy' and 'swim' (asking to do swim with Dad). So he's 'non-verbal' but the kid still manages to get his point across. Like Monday, when I served him dinner of baked chicken, green beans and couscous and heard him utter, for the first time, "YUCK!" Oh well thank you buddy! Now eat your freaking dinner! (He didn't. He made some additional gagging noises and I gave him a slice of bread. Beat it kid.) <br />
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<tr><td class="tr-caption" style="text-align: center;">A drink outside the MIND, shown in background.</td></tr>
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Some of the what I has learned has included my often-used-life-saver called the <u>'First/Then.'</u> It's how I get him to do most of what he doesn't want to do. And it often involves Spongebob. I can't TELL you how sick I am of this Spongebob character. "FIRST you get dressed, THEN you watch Spongebob." "FIRST you take a bath, THEN you watch Spongebob." "FIRST you go in the house, THEN you watch Spongebob." He was obsessed with Jack's Big Music Show, then Blues Clues, now his sister has brainwashed him into loving Spongebob - it's the only show they <u>both</u> like. Though he is developing an affinity for "Victorious" - B says "Mom, O LOVES pretty teenager girls!" Nicely played B, nicely played. I recently heard her say "Owen, FIRST you get on the chair with me (pats spot next to her on recliner) THEN I'll turn on the TV." Use it for good B, not for evil. <br />
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<tr><td class="tr-caption" style="text-align: center;">On our flight from San Fran to Sac - on a 30 person prop plane. O wisely reading emergency card. </td></tr>
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I am also working on other language skills - slowing down my speech ('You tend to talk really quickly, like a typical New Englander' she said gently. WhathefuckaretheytalkingaboutIdonttalkthatfast! Nowhurrythehellupandgetoutofmyway, I'mlate!), close face to face interactions, not asking questions (they don't enhance language, are frustrating to a child who can't respond, and can set up conflicts. "Do you want to go take a bath?" "No." "Ummmmm. K then.") <br />
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I'm working on 'Expectant waiting"- which is allowing him time to finish thoughts/sentences - "You want me to roll your window......." "DOWWWWN!" "Let's pull your pants....." "UUUUP!" The skills I am learning teach him to use and reinforce his vocabulary. It's been pretty fascinating and as his mom I am willing to do whatever it takes - even five trips to Cali - to help him however I can. Kids with improved verbal ability are less frustrated because they can express themselves and they feel understood. I try not to worry about the future, while at the same time keeping an eye on it...better language now leads to better language then, improved understanding now leads to better behavior then...don't worry about it, just work towards it. Improve now, improve the future.<br />
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<tr><td class="tr-caption" style="text-align: center;">Over somewhere USA, looking for a creature on the wing, per usual. </td></tr>
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One of the coolest parts of our trips have been our stays at the hotel. It's the only hotel close to the medical complex, so many of the guests are receiving medical services or have a loved one who is. The hotel staff is <u>always</u> warm and welcoming, and by now most know us "You're back! So good to see you! Blue Moon?" We have our favorite staff at the Bistro and our favorite concierge who attempts to help me with my research-study-lended-Mac and ribs us "Back AGAIN!???" We even know the housecleaning staff who always greet Owen. <br />
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<tr><td class="tr-caption" style="text-align: center;">I'M SO HUMILIATED! I LOOK LIKE FREAKING ALFALFA! </td></tr>
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We never fail to make friends by the pool. On my second visit I met an 8 year old boy named Romero. I'm that creepy lady who always talks to children. WHAT it's my job!!?? Plus they are more amusing and honest than grown ups. (Fine, I admit it, I talk to grown ups too, you got me.) He told me "I'm here for my 3rd eye surgery. My birthday is over the summer so I never have birthday parties. My older sister has a birthday over the summer but she always has parties. She has lots of friends who come to HER parties." Romero, was big for his age, both in height and weight, and I wondered the real reason why he didn't have parties. <br />
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<tr><td class="tr-caption" style="text-align: center;">Tough life in the hotel.</td></tr>
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At our last visit we met Shawna, her husband and her four kids. Her two sons were 2 and 4 years old, while her daughters were 7 and 10. I saw the kids staring at Owen, which I understand - he can be a little flappy, a little squeal-y. Often times kids 'notice' something is different about him before most adults do. I saw the 4 and 7 year old exchange glances and smirks in the hot tub while we shared it with them. Shawna and I chatted and explained to each other the reasons for our stays. I told her about Fragile X and our research study, while she disclosed to me that her dad, an electrician, had just been badly burned while on a job. She described the horrific noises in the burn unit, people screaming in pain as their dead skin was scrubbed from their bodies with SOS-like-looking pads. I could see the pain and worry and love in her eyes for her dad. The shock and disbelief are as familiar to me as my mirror reflection. She and her mom and her boys had stayed at the hotel for a week, while dad and the girls had visited and gone home to attend school. Her dad was doing OK, getting better, but they were waiting for his bandages to come off to view the damage to his body. <br />
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As Owen got out of the hot tub, her 4 year old son Cannon ran over with a towel for Owen. After that point, she told me her boys always asked for Owen while at the pool. We spent the rest of the afternoon with them, and both the morning and late afternoon the next day. They brought Owen ice cream and splashed in the hot tub with him, told me about their life in California, hunting with Daddy and their Grampy. They were kind to Owen, and I can't describe how happy that makes me. Often kids ARE kind and generous and thoughtful to Owen, and for some strange reason it always surprises me. I am prepared and ready for unkind words and looks, yet they rarely happen from children. Kids notice differences, but when explained, they readily accept. I thank Sesame Street, inclusion classes, and the tolerance that kids are now taught in school, as opposed to my youth, when the 'different kids' were stuck in that room in the basement, that was under the stairs and next to the cafeteria. Now when we are out in my town, or at local restaurants or the town pool, Owen is greeted <u>far </u>more than B or me. "Are you Owen's mom?" Why yes, yes. I. am. <br />
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<tr><td class="tr-caption" style="text-align: center;">Cheesing in the hot tub.</td></tr>
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During our last night in California at our September visit, Owen and I were eating dinner at the Bistro, like we always do. A woman entered with her husband, who was in a wheelchair and had a face that resembled melted wax, with most of his nose missing - a burn victim. I thought of Shawna, and her dad, and her worried eyes, and her family's kindness. I didn't know if I should greet him the man, or if he could even see me because I didn't know if he could see through his burned eyelids. The couple went to order at the Bistro, and the staff member greeted him "Good evening sir, how are you?" And he replied "Good." They placed their order, and the wife then wheeled her husband over to the big screen, she settling in next to him on the couch next to his wheelchair, while they waited for their food and watched football. He stretched out his arm and wrapped it protectively around her.<br />
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I am lucky, and I am thankful. Thankful for the opportunity to participate in a pilot research study. Thankful to have the opportunity to fly across country with my 4 year old and expose him to traveling, not once but 5 times. Lucky to meet world-renowned experts in the world of Fragile X. Thankful to meet all sorts of people, tell them about Fragile X, and have them share a piece of their life with me, many deep in their worst life moments. We have one more visit left, and I will miss them all - the gorgeous weather, the MIND researchers, the hotel staff, and the hotel guests - strangers who have become friends. <br />
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I'm thankful to stay at the Hotel California, a very special hotel with very special guests, and a staff that knows just how to greet very 'different' people, who are really - just.like.you. Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com1tag:blogger.com,1999:blog-2732986029734064376.post-49466727386873795952012-08-30T11:35:00.000-04:002012-08-30T15:50:30.306-04:00You're not awesome, and you don't suck. Summer is over, and although I am despondent about the weather change (under 65 degrees? FRIGID!) I'm happy to return to routine and finally have time during the day to write. It was impossible to write during the summer while juggling two jobs and full time single parenting - a girl needs a few SILENT hours to write and there certainly was no silence in my house this summer!<br />
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Life has continued to be crazy, and busy, and stressful. <br />
As my mother has said before "Kath-a-leen, you never make things easy on yourself. You always take the hard way." And (grudgingly admitting this) she is right. I tend to explode my life and then am left picking up the shards, as oppose to thoughtfully and 'appropriately' making changes. Example - the social service agency formally known as my job found out first on THIS BLOG that I was leaving after 13 years employment. Let's just say my boss, and her boss, were NOT HAPPY. Oops. And a duh. Perhaps I should have had a little chat with them first, that would have made sense. Sense, what IS that? Do they sell it at Walgreens? Is there a prescription for it?<br />
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Drama. Insanity. 50 Shades of FX. Psychotic stalkers. The summer has been full of weirdness and heartbreak and chaos, and I'm hoping that with fall, streamlining my life, and intensive therapy, there shall be more sense, healthy decisions, and agreements between my heart AND head (those two argue a lot). <br />
I know I'm heading in the right direction, I can feel it. Plus I REALLY want to paint the dining room purple, and I'm positive that will fix everything. <br />
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Our family had no formal vacations this summer, although O and I have had three trips to the MIND Institute in Sacramento ('Where IS the post about that anyway, Kathleen? We are still waiting to hear what the hell you are doing there!' No blog yet. Keep waiting people, I'll get to it.) <br />
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So I've had three Cali trips and also a quick 3 day visit to Miami for the National Fragile X Foundation's International Conference. <br />
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<tr><td class="tr-caption" style="text-align: center;">Intercontinental Miami, beautiful hotel host of the NFX Conference</td></tr>
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The NFX Conference was fabulous and completely necessary for me. I LOVE and NEED to spend time with my national FX family. It's a mutual love and understanding that goes beyond anything I've ever known or experienced. It's can also be totally overwhelming - the amount of information, hearing stories from more experienced parents, both horror stories and stories of hope - it's a highly emotional experience and there is much information to digest. <br />
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By day 3 I shut down and spent part of the morning in Eric and Lola's hotel room solo (I was leaving that day and had already checked out of my room). I'm not so great at hiding my emotions and didn't want anyone seeing the stunned look on my face - Eric only had to take one look at me and handed me his hotel key (see how awesome these people are?). I laid in their bed, cried a little, and slept for a few hours. I left the hotel that afternoon to hop on my plane without a 'goodbye' to anyone - except Mrs. Cindi Rogers who kept popping up all week like "Where's Waldo" - she was, and continues to be, a gift that I desperately needed. I can't thank her enough for the support she gives me.<br />
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<tr><td class="tr-caption" style="text-align: center;">Myself and FX celebrity Cindi Rogers. </td></tr>
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While at the conference, we watched a phenomenal video called "Fragile X Got Talent," highlighting the talents of kids and adults with FX. <a href="http://www.fragilex.org/2012/international-conference/fragile-x-got-talent-2/" target="_blank">Click HERE to watch it...seriously...PHENOMENAL.</a><br />
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We also watched a sometimes wrenching, sometimes hilarious but ultimately uplifting movie called "Mission to Lars" about two siblings, their brother with FX, and their adventurous attempts to meet Lars Ulrich from Metallica (Do they? Don't they? You'll have to see, you can friend them on Facebook here <a href="http://www.facebook.com/MissionToLars" target="_blank">http://www.facebook.com/MissionToLars</a>. )<br />
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As part of the conference, we also went to a Florida Marlins baseball game (INDOORS! Sacrilege!) that not only <u>promoted</u> FX awareness (<a href="http://www.youtube.com/watch?v=Y0AlEARUgaA&feature=youtu.be" target="_blank">Click HERE to watch the Marlins Fragile X PSA!</a>) and <u>paraded</u> our unbelievable LINKS group leaders on the big screen, but the highlight was when the first pitch of the game was thrown by <u>Glenn Sheldon,</u> a 12 year old boy with FX! We were all as proud as if he was our own - because really, he is. <br />
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<tr><td class="tr-caption" style="text-align: center;">Glenn and his parents</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Deep Thoughts with Ted</td></tr>
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During the game, multi- award-winner-and-friend Ted approached me and we had a 'deep conversation' - yes, during a baseball game! Who actually watches those things? Can you see the look of intensity in my face in the photo above? <br />
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He had been concerned about my well-being and wanted to know how I was doing (one of the many reasons why he wins the awards! Sweetest and most caring guy evahhhh!). We discussed the many recent changes in my life, and Ted could see I was clearly struggling - to figure out who I am, where I'm going, and what I want out of life. We discussed the pedestal that others put parents of special needs kids on - SO often hearing quotes like "You are so amazing/awesome/strong!" <br />
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The problem with being thought of as amazing or awesome or strong is that most of us parents (all of us?) don't FEEL awesome or amazing - we feel flawed and broken, struggling to get through our days, imperfect people and parents. We are only trying to do what's best for our kids, and that isn't so unusual! So when you hear "You're awesome! You're amazing!" - it doesn't ring true, doesn't FEEL true, and therefore is a lie, a facade that others put upon us. <br />
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Our lives are filled with IEPs, OTs, PTs, SLPs, potty training, repetition, frustration, sadness, aggression, grief, guilt, hope, inspiration, laughter, everlasting friendships, dripping sarcasm, love, pissed-offed-ness, judgement......so when someone says "You are AMAZING! You are AWESOME!" you think "Nope, <u>I. just. suck</u>. You have NO IDEA." <br />
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I'm not perfect, and as I've written before, it feels as if imperfect=suckiness. House, car, kids, body, jobs, decisions, <u>daily mistakes and fuck-ups </u>- if it's not perfect, then what IS it? It <u>blows!</u> Or at least that is what it feels like - what <u>I</u> feel like. I SUCK! (And I know this doesn't hold true for only parents of kids with special needs, but many of you 'regular people' also.) <br />
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And the best words of wisdom from Ted - that I have held onto ever since - "<u>You aren't awesome, AND you don't suck.</u> You just have to be good enough." <br />
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Good ENOUGH? Good ENOUGH? Really, that's it? Well THAT I can try! <br />
(Although even that can sound formidable - define 'enough.' Ted would yell at me for saying that though, shhhh.) <br />
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<b>Ted said "On your best day people will think you're amazing, and on your worst day people will think you suck. What you need to remember is you're actually aiming to be in the middle - just being good enough, every day." </b><br />
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So yeah, I'm not amazing, or even awesome. But I also don't suck. <br />
Lather, rinse, repeat.<br />
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<br />Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com8tag:blogger.com,1999:blog-2732986029734064376.post-58474352476325399492012-07-22T12:35:00.001-04:002012-07-22T13:04:27.578-04:00It's Fragile X Awareness Day!! And Sarah's birthday! WTF!?<div class="separator" style="clear: both; text-align: center;">
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Sandwiched between our Cali research visit last week, the International FX Conference I'm attending this week, and Owen's birthday on the 25th, is Fragile X Awareness Day. HOLY CRAP HAS THIS TAKEN OVER MY LIFE?!?! Yes. No. Kind of? <br />
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It was a year ago this month that I finally posted in the FX Facebook Group Room for the first time - just one line - "I don't think I can do this." I remember where I was when I posted it - at work on a weekend, doing paperwork, feeling completely overwhelmed and stressed at facing a life with a child with FX and all the unknowns that came along with it. Only a month later, I was at my first Fragile X function, a cookout with all the families. Then came FX Moms' Night Out dinners. Then, in November, O became a cover model and this blog was published. A FX Mom's weekend away in February, DC in March, Cali last month...see, it HAS taken over. And it has been one of the most healing and gratifying experiences of my life.<br />
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Today is my new, yet immediately dear, sweet friend <a href="http://xmarksmyheart.blogspot.com/" target="_blank">Sarah's </a> birthday. Her young son was only diagnosed 5 months ago, and she is swimming in the dark depths of grief right now. And FUCKING IRONICALLY her birthday falls on Fragile X Awareness day. I mean REALLY. If irony was a person I'd kick his ass for her (We all know irony is a man. Chicks don't play that.) I wish I could wrap Sarah in blankets of comfort and hope, and fast forward the next year for her, and reassure her completely that life WILL and CAN get better, just as <a href="http://mrsrogersfxneighborhood.blogspot.com/" target="_blank">Cindi Rogers </a>does for all of us.<br />
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Cindi has two sons in their 20's with FX (those two handsome men on the left above? Those are her gorgeous guys). And Cindi is sassy, beautiful, hilarious, <u>happy</u> and wears SPARKLES ON HER ASS. She tells all of 'youngsters' that 'it will be OK', and she repeatedly tells us that she LOVES her life, and we can and will too. She spends her days reassuring and encouraging all of us. We all want to grow up and be Cindi. And just as Cindi knows it will take us time to get to where she is, I know it will take Sarah her own time to get to where I am, which is only a <u>tiny</u> bit further down the road.<br />
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Becoming involved, advocating, going to DC, participating in Cali research - all that helps ME. Don't be fooled people, I'm no saint (as many of you know, cough cough), and often what seems like altruism has a selfish motivation. A diagnosis like FX makes you feel totally helpless. Defeated. Tragic, even. But becoming a part of the FX community - and really, we say FX <u>family</u> - has elevated my life in more ways I thought possible. Within just one year I have many new PHENOMENAL friends, friends with a depth of strength and courage that I didn't know possible - and many of them don't even recognize in themselves (LOLA!). They pave the way before me, and I join them in our journey. I know I will have them for life. <br />
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Asking for help, seeking support, taking some risks....the payoff has been immeasurable. One year ago I felt alone, isolated, and in the depths of self pity and 'no one understands.' I was where Sarah is right now. And today, all I have to do is text (Holly and Lola hate talking on the phone! They will if I insist though!), or message, and there is my family, just waiting to be there for me. I like to think if you go waaaaay back that we ARE all REALLY related - thanks to that one damn ape that carried the FX gene. <br />
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And even now, my friend count grows. I think of dear sweet Sarah, 'celebrating' her birthday on today of all days, and I already love her. She's gorgeous, her family's gorgeous, we both work with kids, both writers, a shared love for the same music, TV and beer (most importantly!). Our bond was immediate. She first messaged me how much she loved my blog on a day I most needed to hear encouragement and support. She was thanking ME, yet unknowingly helping me too. And that is how it is in the FX family - friends across the country, across the world (Kerry Page- I love you! And especially when you leave cool English sounding comments on my page! Blimey!). And I think that's how it works. Helping each other helps us. Being there for Sarah helps me. <br />
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I've been able to meet and consult with some of the biggest experts in the field
of FX. This past Cali visit, the head researcher of our study, Sandy,
used the word "amazing" <u>many</u> times in reference to Owen. Any idea how reassuring that is to hear as his mom? Everyone at the MIND Institute has been so warm, supporting and encouraging. They come down to meet us! To say bye! Even the professionals in FX rock! <br />
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It's Fragile X Awareness day and I could not be more thankful. Weird, huh? I am overwhelmed with love and gratitude that someone (Was it God, Liz?? Could you be right??) sent me these people. That is how it feels - that they were given to me as gifts. My new friends, my old friends, my dining club, my work friends, my AWESOME local FX Moms who are already my best friends, my family. These totally awesome people who love me and my kids, who support me, without reservation or conditions.<br />
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So today - on Fragile X Awareness Day, DO SOMETHING. Wear green to represent FX, pledge to learn more about FX, or just ask me and learn more about how it affects Owen. Pledge to NEVER say the 'r-word.' Pledge to bitch slap anyone who does. And if you are struggling with this diagnosis, and lurking in the FX rooms, just speak up. Ask for help. Message me, message any of us, I promise - we will be there. <br />
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Or just do me a favor buy Sarah a Blue Moon (keg) for her birthday. Sarah, I promise you that you won't always feel this way. You will survive the depths of grief, and this horrible hell that you are living in. I know it's no consolation now, because it didn't matter to me either a year ago, but you will emerge with strength and courage and love you didn't know was possible. You WILL be OK. I promise you, just like Cindi promises me. And we will all help in your journey, just as you have already helped in mine. Happy birthday sweet girl.Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com2tag:blogger.com,1999:blog-2732986029734064376.post-81009832553802222182012-07-06T10:58:00.003-04:002012-07-06T11:51:18.800-04:00Freedom's just another word for nothing left to lose...One of the best lines from one of the best songs evahhhhhh - and it's totally true - the more you lose, the more freedom you have, whether that's for good or bad. To live without your family, or money, or to have no ties and not give a fuck - you are free. Free of responsibility, or material obsessions, or free from caring what other people think. Nothing left to lose.<br />
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Most people are waiting for a blog about our trip to the MIND institute. <u>This is not it</u>. I'll say our trip was AWESOME and Owen did unbelievably well on the flights, in the hotel, and enjoyed his favorite stool at the hotel bistro where he could flirt with all the girls. More on that later.<br />
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What has happened is that Owen's diagnosis - the emotional fallout, and then the publication of this blog - has totally changed my life, for good AND for bad. Publishing this blog was an enormous stressor and at the same time it was a relief, to have it 'out there.' It has also been difficult living with the repercussions of many acquaintances and strangers (O's medical staff, school staff, local parents) knowing such an intense and vulnerable part of me.<br />
Almost two years since starting this blog, I wonder - is it still who I am? Does it still represent me and how I feel? Maybe not. (But yet here I am <u>again</u>, baring all on this fucking blog.) Can I live for the rest of my life with this blog title attached to my name? I don't know - because REGARDLESS of what it says under the blog title, people still continue to misconstrue it, misunderstand it, and even look at me like I'm a monster when they hear the title.<br />
I was recently accused of being a hypocrite when I took offense to someone who regularly uses the words "gay, fag, queer" - but it was OK because he used them "in context" and "has gay friends"! He said "Look at your blog, it's all in the CONTEXT!" What, huh? So this blog negates me being able to be offended by racial or homophobic slurs? Again, am I somehow misrepresenting myself and what I stand for? Or was he just a huge douche bag? (The latter is a definite). <br />
When I was in DC and met FX Dad and now friend Shannon, it took him some time to put 'me' together with 'my blog' - and when he finally did, he said "You are much nicer than I expected you would be!" Am I being represented here? But sure, ok, I'm not THAT nice. <br />
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I have spent the past year saying "Yes" to everything, only to become overwhelmed for taking on too much. I took a risk and allowed this blog to be published for all to see. It's always fun to admit to suicidal ideation in public.<br />
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I pushed myself to do more, be happier, not WAIT...and the fall-out from that has been both good and bad. Through it all I realized I WAS NOT HAPPY and not 'because of Fragile X' but because of a soft but powerful voice in my head, telling me, reminding me, "You aren't happy, you can't wait, not happy, don't wait...." over and over. I didn't know what to do or where to go about the nagging voice, so I just said "Yes" to everything I was asked to do, showed up, and tried to ignore the fucking thing as much as possible.<br />
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I started connecting with more people - FX friends - and expanding my circle of local friends, some old and some new. Through talking and BEING with other people, my unhappiness became clearer to me - I would hear how others talked about their lives and their marriages, with faith and hope and love, and I just felt a sense of hopelessness and negativity. I had lost my faith in a happier tomorrow. Through doing 'everything' I was just combating what I was trying to avoid - that my life wasn't working. I realized one huge part was my marriage. It has been one of the worst times of my life - worse in ways that are different from the FX diagnosis, which was pure grief - it's been a a complicated tangle of marital problems and separation that made me physically sick - I have lost almost 40 pounds since January and have had handfuls of hair falling out.<br />
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I would think repeatedly, over and over "This isn't what I wanted. This isn't what I wanted. This ISN'T WHAT I WANTED." 40 years old, two kids, one with special needs, and now to get divorced? I am quite the package!!! But I couldn't ignore the whisper in my head any longer, so we are now separated. The kids have done <u>amazingly</u> well with it, we are both very active co-parents, and we work hard to continue to provide a parental 'united front' against the monsters that are our children. I'm proud of their Dad, who has also been finally battling his own FX grief and demons and kicking ass at it. I can only hope that regardless of what happens to my family that we will always remain a 'family'- in whatever form we take. <br />
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Private practice, my non profit job, marital separation, our cat Mojo went missing, summer, full time single parenting, cobbled together child care, California trips - let's just say I've been "a little overwhelmed" lately. I'm feeling like I'm doing so much that I'm not doing anything well (sound familiar MOMS??). I need to streamline - keep streamlining and de-stressing my life - what can go? What can't?<br />
So I've decided to leave my non profit job and focus on expanding my private practice. I have worked for 13 years there, and it will kill me to leave - coworkers who have become family, who have seen me and supported me through the worst years of my life, and some of my clients I've known as long as I've been there and watched grow up - frankly I can barely get through writing that part without tears. You can't do my job (well) and not care - and those kids that you feel like you've known forever, they have a part of your heart, leaving them, losing them, I'm not prepared for that. At. All.<br />
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But...SOMETHING HAS GOT TO GIVE and seeing as the whole Fragile X thang isn't cured YET, I have to go with process of elimination. What can go? <br />
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Jump. Jump. Jump - Jump out of marriage, out of a job, jumping into the future and the unknown is absolutely fucking terrifying. I haven't really been looking where I am jumping, I've just been throwing myself off the cliff and hoping I don't smash my head (heart) on the way down...But you know what? It's kind of easy, too. Because there is a freedom with all this loss, and grief, and acceptance. When we sit in a restaurant, and O screeches and flaps and people look, I DON'T CARE - I don't. I only see him for his adorableness and smiles and being MY BABY. My blonde little baby boy. I enjoy him, so look at us, look how much I love him, look all you want because <u>I</u> <u>don't</u> <u>give</u> <u>a</u> <u>shit</u>.<br />
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Free - freedom from caring about other peoples' judgements, free to choose my own future, free to become whatever I want when I grow up. There is a freedom to being vulnerable and honest on this blog. Here's my truth, do with it what you will. <br />
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So I'll jump- again - keep your fingers crossed, let's hope I land on my feet...<br />
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Well hello! Good to see you. It's been a while. I was really, really REALLY sick of you. Tired of being enslaved to you, both externally and internally. Monitoring, checking stats, moderating comments, reading and replying to emails, updating design and photos - but also, and the more relevant reason, being vulnerable. Writing this blog, about a SMALL part of my life, is both utter self disclosure yet a mask. Raw and honest, I can't bullshit you - so if I can't be real, I can't write for you. I show you only what I want you to see, pry up a small corner of the band aid and let you see a tiny tip of the gaping wound. You might think this blog IS me, however it's about 3-5 percent of me on any given day. I have a whole <u>real</u> life to live that I don't commit to paper (just facebook). And sometimes, I have nothing to write 'as the parent of a child with special needs.' Oh sure, I have a WHOLE bunch of other drama I'm sure you'd LOVE to hear about, as it is the stuff Lifetime movies are made of, but you'll have to wait for the book. And yes, you WILL be in it. So be fucking afraid.<br />
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I will admit that even though recent problems aren't due to 'Fragile X', they are the reverberations and aftershocks of the diagnosis - not directly related to the explosion, but related to the eventual fallout. There is <u>no way</u> you can experience that and not be changed and effected, immediately and forever, and the real volcanic eruptions are years after, living with the changes within yourself and trying to figure out how the new you fits into a new future in the same life, and what needs to change for that to happen. Fix fix, make it fit, be happy again, move on, keep going...<br />
Or you could just wait until you turn 40 and then have a HUGE midlife crisis like me. Whatevs. <br />
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As the days and months have slipped by in the year and a half since I started writing this blog, so has the pain. Like any grief, time does help heal. Cliches are often true for a reason, people. Life changing events happen, we adjust, and then we eventually return to baseline. It's our biology as humans. Make lunches, go to work, eat meat, wash laundry. Repeat. My life has become less and less about 'the diagnosis' - well, you don't expect me to sit around and cry about it forever do you? I mean, yes, I will, AT TIMES, but I have big girl undies and I put them on EVERY DAY. Except for, well, ummmm...never mind. But that's a different topic, this isn't 50 Shades of FX! However that will be in the book too. <br />
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Owen and I will be leaving for the MIND Institute this Sunday, bright and early. JUST him and I on cross country flights, layovers included, on a 5 day trip to the great state of California - trip number 1 of 6 (yes, my insanity has officially been confirmed NUMEROUS times this year - and this is one of them). I am a mix of absolutely terrified combined with <u>totalllllllly</u> pumped. It's pretty much the life of a Fragile X mom - intense polarities - like absolute grief and devastation combined with a love so pure it can bring you to your knees, everyday, at a moment's notice. I see what he brings out in people - I just sit back and watch him, really. That's all you can do is but to live in HIS world. His neurological system, different than ours, prevents him from living in ours, and I don't expect him to. I go to where HE is at. And he loves this world. When he feels an emotion, it is experienced in every fiber of his being.
Joy, fear, excitement - they pulse through him and come flapping out his fingertips. He throws his arms around our yellow lab Daisy, and she leans into him. The elderly bus driver who never cracks a smile yet has taken to beeping
the horn AND waving to Owen every morning, which thrills him. He insists in driving with his window down, adores huge trucks and motorcycles, and gets pissed if you drive PAST the highway but don't get on it. He charms a neighborhood parent, who always makes an effort to say hi and engage Owen every morning, complimenting his smile and charm, who said to me this very morning "If Owen can't make you smile, nothing can."<br />
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The world is full of terrors, but Owen shows me the true kindness in people. He is charmed by the world, and in return, it is charmed by him.<br />
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<tr><td class="tr-caption" style="text-align: center;">B and O at FX Mother's Day brunch, 2012<br />
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<tr><td style="text-align: center;">And as if to reinforce my point, an hour after publishing this post Owen came home with this gift bag from his two primary aides at school.</td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td><td style="text-align: center;"><br /></td></tr>
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com2tag:blogger.com,1999:blog-2732986029734064376.post-30088530238212303962012-05-02T12:22:00.001-04:002012-05-02T15:26:08.923-04:00We're not gonna take it....40 came, 40 went, and overall it was a WONDERFUL night that reminded me how blessed I am to have such wonderful friends and family who love and support me.<br />
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A long time friend showed up, an old bff, and brought a huge hand made photo board and another small photo album assembled by her kids of notes and pictures for me. I was moved by her thoughtfulness. As we later talked she told me how my blog has inspired and moved her, and she wished she could do the same with her own recent struggles, which in the past few years had inadvertently caused a rift between us. <br />
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At the end of the night as we were all taking photos. Our posed group shot ended and and we continued to stand and chat in place, she said "and oh my god I couldn't believe how retarded that was..." I froze, standing feet away from her, swiveled my head to look at my other best friend, then turned back and asked "Did you just say what I thought you said?" She replied "Oh come on, you use it all the time! I don't know why people are so uptight and politically correct! Even my friend Kate gets upset when I slip up and say it...." I was stunned. My friend, OLD friend, after everything she had made for me and said to me and then....not just using the r-word but then DEFENDING IT???<br />
Occasionally, I've experienced a friend use it in conversation with me, then look at my with fear and wide eyes and a horrified "OMG I"M SO SORRY!" Those people are easier to forgive because I can see they are genuinely apologetic and appalled and fearful for their life. <u>And most only do it once. </u> But from her, that night, off all nights...<i>I just didn't understand. </i> DO!? YOU?! READ?! MY?! BLOG??!! And if so, is this somehow my fault, did I do something wrong - is the message so muddled by the title that the point doesn't come across EVEN TO MY BEST FRIENDS??!!! I don't know. I think my real friends would tell me right now to shut the hell up, they they 'get it', that they've worked to not say 'THAT WORD'.<br />
And to be honest, this person hasn't really been in my life much lately for various reason, so I have to also admit that maybe a real friend wouldn't do that to me.<br />
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Why do we do it? Why do we put up with people in our lives who treat us like shit? I see it all the time - in friends, in clients - sometimes pathologically so - when they are people who have abused you and continue to abuse you. You'd be shocked (or maybe, you wouldn't be) at how many known pedophiles attend family functions - even though the whole family is aware, they all just pretend for the dog and pony show.<br />
<br />
We all do it - maybe not to that extent - but we do. "But they are my mother...father....sister....blood relation...wife...husband....boss...best friend....oldest friend..." And this time, maybe it will be different. Maybe this time they'll be kind, or listen, or loving.<br />
Or really, maybe this time they won't be such a bitch. Maybe he'll talk to me more. Maybe she won't call me names. And every time - you're disappointed. Because really, those are YOUR expectation, so when they are dashed who's fault is it? Do you continue to bang your head up against the wall and wait for people to treat you differently - THIS TIME? We wait for people turn into who we WANT them to be, or who they USED to be, or someone who we KNOW that they can be, or maybe we are even still HOPING that they will <u>finally</u> become that person - who we need them to be...the person that we may sometime see a glimmer of, but who never fully materializes.<br />
<br />
Or do you learn to detach - walk away - and stop giving a shit. Not love, not hate, just apathy. "Lack ofs" - lack of expectation, lack of disappointment, lack of self abuse. Because if you continue to let people abuse you, aren't you just as much to blame? Why self abuse when you have others so willing to do it for you? "Change the voices in your head, make them like you instead..."<br />
<br />
Within seconds of the 'r-word' debacle at the party, my troops had rallied round and all types and kinds of my friends, including the 911 Team Honey Badger, were the on the scene to sooth, reassure, and most importantly make me open gifts and laugh uproariously. The party was still in full swing and I needed to get my dance on, so I got over it and proceeded to enjoy the rest of the long crazy fun evening.<br />
<br />
The next morning, I received a text from the friend thanking me for the evening. Although I had let it go the night before, that didn't mean I wasn't going to address it. So as a true mature adult, we had a text war. <br />
<pre> </pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>F- I had a great time last night. Thank you for inviting me.</i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>
Me- BTW I NEVER use the word 'retard' and find it highly offensive. </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>I'm not sure if you read my blog how you don't get that.</i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i> </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>F-It wasn't my intent to be offensive and I apologize.</i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>
Me- I was shocked.</i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i> </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>F- Words slip out sometimes. I'm sorry you're so upset. </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>
Me - Then you defended using it and said you didn't understand </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>why your friend Katie continues to get pissed at you for using it. </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>Clearly you're not 'getting it.'</i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i> </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>F-No I said Katie used to get mad at me for slipping all the time </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>saying it. Even the president slipped up and said it before. And </i></span></pre>
<pre style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>I do get it. I can't take it back.</i></span></pre>
<pre> <span style="font-family: Georgia,"Times New Roman",serif; font-size: small;"> </span></pre>
<div style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">
<br /></div>
<div style="font-family: Arial,Helvetica,sans-serif;">
<span style="font-size: small;">Annnnnnd there you have it. If the president did it, I guess it MUST be OK!
Ohhhhhhhhhhhh!!!! Good to know. Where's that box of cigars? And anyway, this person is a REPUBLICAN!</span><span style="font-size: small;"> So technically it's an invalid statement. </span></div>
<div style="font-family: Arial,Helvetica,sans-serif;">
<span style="font-size: small;">Maybe I'm crazy. Or sensitive. Or
sending mixed messages. All I can say is - it's my blog, it's my party, and I'll bitch
if I want to. </span></div>
<div style="font-family: Arial,Helvetica,sans-serif;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: Arial,Helvetica,sans-serif;">
<span style="font-size: small;">But overall, a minor glitch in a great night. However that incident, and my daily work with women of all ages, reminded me that it's never ok to tolerate being treated inconsiderately, insignificantly, and abusively - regardless of what form that abuse takes. </span></div>
<div style="font-family: Arial,Helvetica,sans-serif;">
<span style="font-size: small;">My clients, both young and old, need someone's voice to support, protect and defend them, and then they need to learn to find their own voices to protect and defend themselves. I need to remember to <u>continue</u> to use my voice (writing, loud mouth, whatevs) and speak up -when ever, where ever, and to <u>who</u> <u>ever</u>. I have a hard time witnessing ignorance and injustice. I see so many people maintaining relationships with the same people who have caused them the most devastation. Why? Because 'this time will be different?' This time they will step up? The chances are if they don't respect you now, they never will. </span></div>
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<span style="font-size: small;">It's not OK to let some one make you feel 'less than.' Don't tolerate it. </span></div>
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com1tag:blogger.com,1999:blog-2732986029734064376.post-80923490904747241952012-04-24T10:50:00.000-04:002012-04-24T22:21:56.468-04:00I'm not ready to be 40.Many of my friends have turned and are turning 40 this year. It seems every day on Facebook another birthday churns by and I watch my cohorts celebrate their next decade. Girlfriends say to me "I feel better now then I did 10 years ago! I'm better than ever! I am loving it!" And believe me, I've had enough people say it to me in reply to my bitter resentment at what I consider an oh-so-evil-number that I have learned by now to nod my head, smile, and say "Yes! Yep. Good for you!" and then I throw in a "You go girl!"<br />
<br />
However, for me there is a feeling of having these last few years stolen from me. Having a part of my life that was supposed to be so meaningful, unforgettable, and rare and joyous - raising your babies into children. Watching your body and then your babies grow. Enjoying the first babbles, words, steps, and then proceeding to hilarious toddler comments and wondrous and terrifying feats of physical daring. The pure joy of watching your child unfold and develop.<br />
<br />
I know that joy. I get that. I had that. B was always developmentally ahead, bright, alert, huge vocab at a young age, well behaved, adorable - and I was a 'smug parent.' I'd see her so far ahead of kids her own age, or where she was at the same age of other children. And it's funny, just as I would smugly internally congratulate myself, an inner Irish Catholic guilt voice piped in and reminded me to be careful, be appreciative and that the wrong kind of pride can be dangerous.<br />
<br />
So as I watched Owen not develop, not be alert, not walk, not talk.....those moments were stolen from me. Those precious joyous moments instead became markers of fear and devastation, as the months ticked by and still....nothing.....and I knew something was wrong even in the first 8 months of his life- he was SO different than Bridget. That's why when SOMEONE finally identified it other than me, I was off searching for answers. I knew. Do you know what it's like to NOT want to fill out your child's baby book? Oh, what to include in it?? Their first 'Early Intervention' note? Neuropysch test? And for some of my friends, first date of ambulance ride or overnight hospital stay? First surgery? All those precious moments become an undefinable terror that you have to live to experience, and all those moments are stolen. Their babyhood, so rare, stolen from us. I've become lost and immersed in the grief and the anger - we
therapists call it 'surviving rather than thriving.' You're trying so
hard to get through each day you can't be the best 'you'. We
therapists call that 'self actualization'. (See, learn while reading
this blog too!) <br />
<br />
And now, facing the next decade of my life, I feel I know so much more about life and yet so much less about myself at the same time. I've worked hard to improve my life and make it better, search out support, take care of myself, write, take risks - and it's paid off. A contributing writer to Bay State Parent, eating better, my own business, still at my non profit with some unbelievably great clients and staff, became active in a whole other community/world/cult of Fragile X with inspirational people and emerged with new best friends, exercise, my dining club, becoming a member of the DCF advisory board, seeing lots of old friends again and making new ones, maybe even doing a tiny bit of spoken word poetry....<br />
But yet in the middle of all of my attempts to thrive and self actualize it seems I know even less about where I am going and what the next ten years will bring. The difference between my some of my cohorts and myself is that they feel settled. Their kids are growing, getting older, are healthy, their careers moving forward, homes solidified, money in the bank, and they are feeling that they can start to breath a little as thier kids become a little more self sufficient. Enjoying the precious moments of baseball games and parades and beaches and Disney - they are only young once!<br />
<br />
These moments will not all be for us. Not sure if and when O will be able to handle some of that (at least, the super noisy and crowded activities). But honestly, that doesn't bother me as much. I'm always going to make sure my kids get to do what they want, regardless of how it happens. If that means B and I go to the parade alone, then that is what will happen. And we'll have a good damn time. And I do believe that with work and help and patience and meds (for who I'm not sure) and insanity, O will be able to go to all those places too. I won't give up. My job has shown me that children can overcome and endure and are much smarter than we give them credit for, and my own kids continue to amaze me daily. I have to believe in my own kids' strengths. And I do. I'm pretty sure they are remarkable kids. <br />
<br />
Maybe it's me I don't believe in. Turning 40, sad and grieving some stolen years. Not ready to be a grown up yet. I feel like I still need to find me. Therefore, I dunnnnnnnoo about this 40 thing. Not really feeling it. Not really wanting to feel it. <br />
When you start to watch the decades pile
up and are able to use them referentially, that is a problem. Went to my 'twentieth high school reunion' a few years ago! My father has been dead for twenty years this year. Many of my friends I've know since high school and college - BOTH over 20 years ago!<br />
What happened to "Never trust
anyone over 30"? The cops don't even look at me suspiciously
anymore, yet I still feel guilty when I see them! "I didn't do it officer." Today the bus driver beeped and pointed at us and I was thinking "Oh shit I hope I'm not in trouble!" (It wasn't me. Cam forgot his sweatshirt on the bus yesterday. Whew.) <br />
Between
working with kids everyday and seeing high school friends every friggin
week, I'm pretty sure nothing has changed! (it's no wonder my favorite population to work with is teenage girls.) I still <u>feel</u> 20, still see the same people I was friends with
when I was 20 (and 15...and 5...) still visit the same places. How can I be 40? I've changed by not changing at all....<br />
Mid life crisis? Hell yeah. Big time. Thankfully, there are books on all sorts of topics so I just logged on and ordered some midlife crisis books to be delivered straight to my local library! Love C/W Mars. Turns out, I fell into several different categories, which bizarrely relieved me. I love putting a name to things! What the fuck is wrong in my head, let's look it up and label it! (What - it's my job OK, it makes ME feel better! To my therapist friends, they say an mid life crisis is due to an undiagnosed adjustment disorder. Innnteresting.)<br />
<br />
So in 3 days, gulp. I'm just not ready. I'm kinda scared. I don't wannnnnna. The minutes tick by, the days turn to night and to morning again, and soon the day will come and go like every other. Birthdays are overrated days, like New Year's, the prom, and Valentine's. Then BOOM it's over with and done with and I'll be super old. Next up, the calendar that is chock full of activities and appointments and parties and weddings and visits to California and Miami and then the months will continue to fly by....<br />
Yet I can't help feeling that there is a hell of a lot more coming at me that I can't even see yet....<br />
<br />
"Oh, mirror in the sky, what is love?<br />
Can the child within my heart rise above?<br />
And can I sail through the changing ocean tides<br />
Can I handle the seasons of my life?<br />
Oh oh... I don't know - oh I don't know<br />
I've been afraid of changing<br />
'Cause I, I've built my life around you<br />
But time makes you bolder<br />
Children get older<br />
I'm getting older too<br />
I'm getting older too...."<br />
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<tr><td class="tr-caption" style="text-align: center;">Photo Credit to Liz Smarra - friend since 1986....</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com2tag:blogger.com,1999:blog-2732986029734064376.post-52559638881323835552012-04-19T17:15:00.000-04:002012-04-19T17:16:47.836-04:00April "Bay State Parent" article by Yours Truly....<a href="http://www.baystateparent.com/find-a-copy/the-archives/April-2012-issue-of-baystateparent-Magazine-144695785.html" target="_blank">Click here for April's "Bay State Parent" article "It's OK to go shopping with Batman and other Words of Wisdom", page 58. </a><br />
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<br />Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-44414439166715624352012-04-11T12:26:00.000-04:002012-04-11T20:19:25.721-04:00The kids are alright.Two weeks ago was Owen's "2nd Annual IEP Meeting!" Woot! Ah, annual dates, usually torment. At his last IEP meeting in December we discussed and decided he would be moved to the "Orange Room" as his primary class. <br />
At that time he was struggling in his inclusion class and with "ongoing attention, hyperarousal and 'excitability' issues." Since he started the Orange room (ABA classroom) in January, he has new on- to-one aides who have received special trainging, and he is in absolute LOVE with his 'primary' aide Kayla! LOOOOVE. I will for now and evermore request all his aides be adorable women. Owen is so superficial that way.<br />
<br />
O continues to participate in both his inclusion class (Green Room) AND his 'old' special education room (Yellow Room). So yes, he visits 3 classes during the day (usually for circle times) and returns to the Orange room for school work. He's a social little guy and enjoys hanging out with all his friends and teachers throughout the day, in addition to going to his treatment services (and visiting all those hot ladies) and doing work in his cubby in the Orange room. <br />
He has binder that travels with him and his whole day is extensively detailed in it. We knew that he had been doing well, both because of the binder and monthly meetings with his Orange room lead teacher and other staff. In school speak, he had been 'coming along' and 'progressing nicely' - although he "continues to have ongoing issues at transitions times" (of course, he has a million transitions during during the day and is often leaving friends to go off and 'work' somewhere - so his 'issues' are more about his refusal to leave his friends. Can't blame him). I wasn't dreading this year's IEP - same staff, same school, same services, one more year to 'breathe' before I have to train his next staff at a new school.<br />
<br />
This was the first IEP meeting where I cried tears of joy. His inclusion teacher called him "the mayor of the classroom." He both likes and is liked by ALL the other kids in his inclusion class, and yes, even the typical kids! (Side note - Owen attended his first friend birthday party - a student from the inclusion room. At the party their were all 'kinds' of kids there, about 30 kids in total, and Owen was just treated...like Owen. Like normal. Except apparently his friend Liam INSISTED both parents come over and meet Owen. So, I'd say more like the rock star treatment. Per usual. You should see how he owns both our local coffee shop and the young cute girls that work there - he had one sitting with us at our table instead of working last time we were there). <br />
<br />
The school staff has noticed how well O does with 'peer role models' and want to increase his time in the inclusion class room - great news! He is meeting all his IEP goals - improving both fine and gross motor skills, but also learning 'school' stuff like counting and colors. As a kid with developmental delays, he is obviously 'overall delayed' in all areas - cognition, speech, motor skills. However, ongoing regular progress and goal achievement is music to a mom's ears.<br />
He still struggles with speech - I can compare his difficulty with motor production similar to a stroke victims - he knows what he wants to say, but he can't get his brain to move his mouth the ways it needs to move to make the right sounds. For most children that is automatic, for O, not so much. He has to learn. He does have a 'decent' vocab, particularly enjoying the words "DAD" "YES" "NO" and "BYE" frequently, loudly, and often. Which really, what more do you need? But he also has more words and tons of signs, so that is still a work in progress and hopefully our MIND visit research study will also help.<br />
<br />
<br />
As each staff member spoke during the meeting - his physical therapist, occupational therapist, speech therapist, ABA lead teacher - it was obvious their clear affection for Owen. As a professional working in a child focused field, I can tell when other professionals 'enjoy' their jobs, and I can tell that Owen has captured their hearts. Such a relief to know your child is with people who care.<br />
All of the kids and staff in both the inclusion class and special need classes also use a sign language signs for each of their names - and for O's, they use the letter O in a smile movement over the mouth. Perfect. : ) <br />
Exhale.<br />
<br />
<br />
Later that same week, Bridget won a school award for "Honesty" and when I talked to her teacher later that week, her teacher told me "Listen, I want you to know Bridget is doing GREAT. We are testing their reading levels right now and she tested off the charts, way beyond first grade."<br />
Yay!! Exhale again. <br />
<br />
<br />
AND....this Easter, O seemed excited as we described the bunny and candy and
gifts he would be receiving. Although almost 4, he still doesn't quite understand the whole concept of the Easter and the bunny deliveries. The concepts he does understand? CANDY AND PRESENTS!! His face opening up his Easter basket was priceless.<br />
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<tr><td class="tr-caption" style="text-align: center;">Elmo DVDS! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Socks! I love socks! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgbNptp0JqZuDLUq9J2rw7JLLTr7mQg8xmpiXixwclWlcRd5W5Qe7k4-nslmQTzIFE8zJ59luTkqbQr_WxrbUjAk10zH6vUHhhqqf8OrVNWOuPuJz1sCpo5S73Wdorq748BsZ_q9xkl1te/s1600/March+and+April+-+Lulus%252C+parade%252C+easter%252C+girl+scouts+dance+070+%25282%2529.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgbNptp0JqZuDLUq9J2rw7JLLTr7mQg8xmpiXixwclWlcRd5W5Qe7k4-nslmQTzIFE8zJ59luTkqbQr_WxrbUjAk10zH6vUHhhqqf8OrVNWOuPuJz1sCpo5S73Wdorq748BsZ_q9xkl1te/s320/March+and+April+-+Lulus%252C+parade%252C+easter%252C+girl+scouts+dance+070+%25282%2529.jpg" width="257" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet! Tub letters! I love bathing! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM1B96wXIJ-bOkTpNsSTL6XLXriwUrvm8aAM48XxbuUhrW6cpVvZVnWFMVvvZj0iyiJWb_0rRXS1UTkWM7WN9Fxh5rb4R8t-nfvn3y958x3kfs9Zdpymw2Y1ALo-x_rzpWsupuSqcIc7Tm/s1600/March+and+April+-+Lulus%252C+parade%252C+easter%252C+girl+scouts+dance+087+%25282%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM1B96wXIJ-bOkTpNsSTL6XLXriwUrvm8aAM48XxbuUhrW6cpVvZVnWFMVvvZj0iyiJWb_0rRXS1UTkWM7WN9Fxh5rb4R8t-nfvn3y958x3kfs9Zdpymw2Y1ALo-x_rzpWsupuSqcIc7Tm/s320/March+and+April+-+Lulus%252C+parade%252C+easter%252C+girl+scouts+dance+087+%25282%2529.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Future Project Runway Contestant</td></tr>
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<br />
Often (always?) Bridget is typically a 'third parent' to Owen - and to be completely honest, she's also his speech/ot/pt/teacher all rolled into one. She's constantly guiding, teaching, showing, having him 'repeat' what she says and what she does, and she can get him to do anything or go anywhere - "C'MON OWEN" she hollers and he will follow (this can be both a bad and good thing!). I've reluctantly accepted that is part of her nature and will probably always be a part of their relationship, at the same time I don't want her to feel RESPONSIBLE for him. I always say "It's not your job! Who's job is it to take care of Owen?"<br />
Easter morning as I was reminding O to go upstairs and use the potty, B jumps in "Yeah Owie, you can get a candyyyyy if you go in the pottttty! Go! Go ahead!" and talking over me loudly.<br />
We then had a discussion about the difference between a mommy and a sister. It's starting to be a tough thing to differentiate, believe it or not. She's a 'big kid' and he's still a 'baby' (toddler-ish). She changes the channel to a show he likes when they are watching tv together, she gets him a bowl of snacks along with herself, she'll pour him a drink and snuggle with him on the chair. She's a <u>great</u> big sister. But we talked about what my job is, and what her job is. At one point during our discussion, she looked at me and exclaimed with wide eyes "But Mommy, Owen is my BEST FRIEND!"<br />
It's funny how a heart can fill and break at the same time. So thrilled she feels that way about him, I hope she always does - I just fear for a day that she may start to look at him differently. Within months they will not be 6 and 3, but 7 and 4. Ugh. They are both still so young and innocent and loving, at these perfect ages. I just want to freeze and keep them this way forever, immune to the judging eyes of our society and the self consciousness that brings.<br />
But hey, at least the kids are doing great, right? That's what is most important. <br />
<br />
At least the kids are alright. <br />
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com5tag:blogger.com,1999:blog-2732986029734064376.post-5308006429895771282012-03-30T12:46:00.010-04:002013-01-25T21:26:19.294-05:00I've joined the cult of Fragile X.The National Fragile X Foundation (NFX) Annual Advocacy Day in Washington DC was a life changing experience for me. It's been hard to wrap my brain around what EXACTLY happened both there and afterward, and how it's affected me and impacted my life - and even the way I feel about myself.<br />
Let me put this out there - I DIDN'T HAVE A CHOICE to go. You may say I did, but I didn't. I have a big mouth, lots of opinions, I'm a social worker who has spent her career advocating for the rights of children and people with disabilities, sat on advisory boards, given presentations. And um, have you read my blog? I would be a hypocrite to NOT go. I've spent my career trying to help other people, and now it was my turn to go to Washington and ask them to help my son.<br />
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I wasn't scared to go by myself, I was approaching it as a 'vacation' - 4 days away by myself in DC! Woot! AND I'd be FINALLY getting to meet all those cool people who live in my computer, who are connected to me by a Fragile X and the internet. Virtual becomes live! Plus a hotel room by myself for 3 nights - that's luxury for a mom of small kids.<br />
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In attendance for NFX training and advocacy day were 150 advocates from 37 different states. I was constantly trying to put real faces to names, trying to connect names to states, and understanding the different roles rules and administration of a national agency. The week was a blur of dinners, taxis, breakfasts, training, tourist activities and of course the big day itself, Advocacy Day! Interestingly enough, it became apparent that people from other states are BIG huggers and kissers, and ALSO very close sitters/standers. It's weird for a cold hearted Masshole like me, but I allow it because to me, they are like aliens from other planets - they don't understand our ways, therefore it's some what forgivable. <br />
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Regardless of what activity was going on, I was always sitting next to someone just like me. Granted, sometimes they had a penis and were a father, and some were supporters of the FX community, and even an occasional professional from NFX (and even many of them were parents of kids with FX). <br />
But mostly, they were mothers, just like me, who had a broken and Fragile X and had passed it down to our children, down to our sons and some of our daughters. And then, after diagnosis, we could all trace Fragile X back up through our families trees. Women affected by infertility, ovarian insufficiency, and early menopause. Men misdiagnosed with Alzheimer's or other neurological disorders. Many of us are the first generation to live with the 'real' diagnosis, as it was only 'discovered' in 1989. Fragile X runs through their family trees like mine, a delicate genetic code repeating and repeating and repeating to rear it's ugly head with the select 'lottery winners.' We all have two good X's ya know, why did we have to pass on the BAD one! 50/50. Damn.<br />
We had all accidentally checked into the Hotel California, and you know how that place is. NEVER. LEAVE. NEVAHHHH!<br />
The bonds of an similarly experienced life can lead to personality quirks that are perhaps 'made' more than 'born' - lack of self consciousness, outspoken, assertive, fearless (at least on the outside). <u>Squeaky wheels</u>. Stories of "Hey, are you looking at my kid?? WHAT THE FUCK ARE YOU LOOKING AT??" (and that WASN'T EVEN ME!). Watch out for the Southern ladies!<br />
Don't mess with these mommas, don't mess with the honey badgers, don't mess with our kids. This FX thing creates mother and fathers and siblings who aren't afraid to stand up and react, educate, fight. Lots of big mouths at this place. And I LOVED EVERY MINUTE OF IT. These are my people. At dinners, in taxis, at tables, they were everywhere - my FX family. <br />
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Advocacy Day itself, March 6th, started with 7am buses to the Capitol Building. <br />
Walking through DC in the sunrise with the largest of group of advocates the NFX has ever had, I was suppressing tears of awe and happiness and pride. <br />
(I'm from Mass, we don't cry.) <br />
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<tr><td class="tr-caption" style="text-align: center;">Thanks to Shannon Gatewood for photo publication rights. </td></tr>
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The day was a flurry of big white buildings, endless walking, polished lonnnnnnnnnng hallways, secret tunnels and tiny fast trains a little too reminiscent of Willy Wonka. I felt like I was constantly asking "Which way? Where? Huh?" It all looked the same to me. Truly. <br />
<a href="http://www.aoc.gov/cc/images/ccm_map_2.jpg" target="_blank">Capitol Hill has 6 different buildings for the Representatives and Senators, </a> and we were scheduled for 5 meetings in 7 hours, but I attended an extra two (why not? what else to do?) so all told I ran to 7 meetings between the buildings, including a secret squirrel meeting in the US Capitol with a top Health Aide to the Speaker of the House!<br />
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And we were also invited to have coffee with Scott Brown for his monthly constituent breakfast. Yep, he asked the MA FX advocates to attend - quite the coup! Regardless of political party affiliation, it was exciting and fascinating to participate in the legislative process, and for the NFX foundation the invitation to this breakfast was unprecedented! We were very happy. <br />
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We also each met with our own state reps and senators - including the offices of Rep Richard Neal, Rep James McGovern, Senator John Kerry, Rep Barney Frank and Rep William Keating. <br />
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It was an amazing day. I loved being a part of the legislative process and advocating for children and adults with disabilities. The energy and passion in Capitol Hill is palpable, and I had much more fun than expected running around and telling my family's story and explaining our needs to their various aides, politicians and offices. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCQxW6C7d1tMxAhxwhbJuPL4hwLIANeyNOuVfNsJFd-sgh2DAa2QfDI4Pm-DHE6bqMo9C6lyjqbTMwxGLYRzz07MHIC0HoCofVIRE2aVhyo4EO_LGlZ9K0BVJHfrGfDXeUgEEdZO_701gR/s1600/Advocacy+Day+DC+march+2012+068.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCQxW6C7d1tMxAhxwhbJuPL4hwLIANeyNOuVfNsJFd-sgh2DAa2QfDI4Pm-DHE6bqMo9C6lyjqbTMwxGLYRzz07MHIC0HoCofVIRE2aVhyo4EO_LGlZ9K0BVJHfrGfDXeUgEEdZO_701gR/s400/Advocacy+Day+DC+march+2012+068.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rep James McGovern, who signed on to cosponsor the ABLE act that day! He rocks. </td></tr>
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I could try to go into detail about the different acts and cosponsors and support we were looking for, but <a href="http://timandmythreesons.blogspot.com/2012/03/dont-let-word-fragile-fool-you.html?spref=fb" target="_blank">Tim Geel's blog post </a>is a great summary. Please check it out.<br />
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<tr><td class="tr-caption" style="text-align: center;">National Fragile X Foundation Advocacy Day, March 6th 2012, Washington DC</td></tr>
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After a day of walking non-stop, we decided to cap the night off with - dinner and a 'walking tour' of the monuments!?? Huh?! These bitches are crazy! And it was worth every minute - only got one blister! Woot! The monuments, although always moving, seemed ghostly and even more devastatingly sad at night. We punctuated our walk looking for beverage stops, but it turns out there isn't many of those near all the big pointy things. Next time, BYOB. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikoAtzwk8N1aESKUeIILJiG2c5mboQR5w4YK90RQWP9dvQtkuPUvq5kM8KRnn8J7vJ8xe4icasPlcVDYZX3tqOqxdorANBW9P870u_dhIKbDLKlJ9A-IjuATENtXp6s3QTVcJyUhnVeKKt/s1600/Advocacy+Day+DC+march+2012+112+%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikoAtzwk8N1aESKUeIILJiG2c5mboQR5w4YK90RQWP9dvQtkuPUvq5kM8KRnn8J7vJ8xe4icasPlcVDYZX3tqOqxdorANBW9P870u_dhIKbDLKlJ9A-IjuATENtXp6s3QTVcJyUhnVeKKt/s640/Advocacy+Day+DC+march+2012+112+%25282%2529.jpg" width="480" /></a></div>
Holly had told me "I'm always so sad when I leave, I'm leaving all my friends." I wasn't really sure what she was talking about, I just met this people! AND I'm from MASS! How could I possibly actually miss these people, I barely knew them? Whatever, that Holly, she's kind of a softie. <br />
And then, the night before I left - I cried in my hotel room bed before I fell asleep. And then I cried the morning I was leaving, while hugging all my friends goodbye, my FX family peeps. I had to sniffle back tears walking through the hotel lobby. I DIDN'T cry in the airport or plane, because that was FAR too public.<br />
But I cried halfway down the Mass Pike, in the car. I miss my friends.<br />
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com0tag:blogger.com,1999:blog-2732986029734064376.post-70137175266778204332012-02-28T13:13:00.001-05:002012-02-28T22:07:52.471-05:00SchadenfreudeI was surprised how quickly I heard from people after temporarily closing down my blog. It was a good reminder that it this blog matters and that it needs to be written. I can only write this blog from a place of raw honesty and truth, and there are some weeks where I don't feel strong enough to be that vulnerable. Times when I feel like I need to hole up and hide and rest and recuperate. Because regardless of the positive readers, this blog still faces constant and ongoing criticism, and I need to feel strong enough to survive the verbal barbs. So know that if I'm not posting, it's most likely because I'm feeling like I can't. <br />
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When Whitney Houston died, the story of her death became the public's <u>reaction</u> to her death - mockery versus grief. Whitney was someone who was graced with unearthly gifts, but once she appeared on her own reality television show she demonstrated human weakness and we saw her future tragedies unfolding. We saw her fall from grace, a perfect woman gifted with 'everything' who later 'squandered' her gifts and paid the ultimate price, while we rejoiced in glee. <br />
There is a German word <b>"Schadenfreude" </b>that summarizes our society today - We derive pleasure from the misfortune of others. And the bigger they are, the bigger we love to watch them fall, right? Whitney? Britney? Lindsey? Charlie? We are a nation full of rubberneckers, enjoying the misfortune of others because it somehow reassures US that WE must be OK - we're not that bad - crack is WHACK, right Bobby? I ain't never done crack, I guess I ain't that bad! False ways of reassuring ourselves it can't happen to US, we'll be juusssst fiiiiine. And what no one seems to remember is that 'there but for the grace of God go I..." (Catholic education not a complete waste). It will never happen to you? Hmmm. <br />
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And MAN, at least <u>your</u> kids are OK, right? Healthy? Thank <u>god</u> you're not me! But it's fun to watch, right? AT LEAST I'M NOT HER! I think it's CRAZY that I could actually have people hate/jealous/schadenfreuding me these days, but I guess I'm a woman with an opinion and I suppose that's intimidating? Annoying? Whiny? I'm not sure. Because I'm hot? That makes more sense. <br />
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Celebrities, artists, musicians, writers, et al. put themselves in the spotlight to be judged. Many artists put their souls on the sheet, to the music, to the crowds, and await reactions. Holy exposure. But it's to be expected, right? Art is a sacrifice of oneself. Laying your body on the cutting board to be sniffed, poked, cut up and dissected. It's always easier to judge others than to risk putting your own opinions out there. I always prefer the souls with big hearts, big mouths and big voices.<br />
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It's easy for someone to say my blog title angers THEM, and I ALWAYS want to ask "Excuse me, do you correct EVERYONE you encounter that uses the 'r-word' in a conversation with you? Because if you do, you are <u>welcome</u> to criticize me. If not, then shut the fuck up." Don't bitch about, DO something about it. Or not, just sit back and judge and criticize and keep safe in your own world of no risks.<br />
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For me? I guess I can retreat, but I'll never give in. There will be weeks I just can't write here. I DO get tired of fighting all the time, for my happiness, my future, my sanity, but that doesn't mean I'll give up the fight - I promise I will not stop fighting, and I won't stop writing this blog. <br />
<a href="http://en.wikipedia.org/wiki/Schadenfreude" target="_blank"> </a><br />
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com2tag:blogger.com,1999:blog-2732986029734064376.post-26554736855359640342012-02-15T12:41:00.004-05:002012-02-15T14:53:03.197-05:00Seven strangers.......I just spent an entire weekend away with 6 women I didn't even know existed a year ago, and all we initially had in common was being carriers of FX and having children affected by it. Writing out a check at the end of the weekend I had to ask Roxanne "So, how DO you pronounce your last name exactly?"<br />
Because of my suspicious nature I didn't rule anyone out as a serial killer prior to the weekend (because COME ON, you never know, their neighbors always say "We had no idea! She was such a nice person!) but we all survived the weekend (at least this one) so I'm assuming a psychopath in our midst is mostly ruled out. (MOSTLY). However, we still managed to get some local stalking in. <br />
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Our first night, out for dinner, Lola promptly checks us <u>all</u> in on facebook. She immediately gets teased for possible 'safety and security' violations (celebs?), but we ARE two hours away from home and who could really be interested in a bunch of boring moms out for dinner?<br />
Within an hour we get a round of shots delivered to our table with this note....<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_3S_BLDcukxSOMMd9vTQ6JOxEkdqxZ81OyY1KvCa6vHYs7nUX0gI0q5FiTN3M_hV_BSJNgBmxLZ9YBklyh3M4R9478Kv5EpvAxMr7M0-Z03NNX6rn2eIxUc7FBbD8RBBfkbK5fnNxbNAO/s1600/grahams+higgins+FXMOMS+WEEKEND+away+127.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_3S_BLDcukxSOMMd9vTQ6JOxEkdqxZ81OyY1KvCa6vHYs7nUX0gI0q5FiTN3M_hV_BSJNgBmxLZ9YBklyh3M4R9478Kv5EpvAxMr7M0-Z03NNX6rn2eIxUc7FBbD8RBBfkbK5fnNxbNAO/s320/grahams+higgins+FXMOMS+WEEKEND+away+127.jpg" width="260" /></a></div>No one seemed to be particularly concerned at first (but paranoid me) and I'm wondering WHO THE HELL KNOWS WE ARE ALL FX MOMS? We couldn't figure out who it was or recognize anyone, until (finally) Lola got up off her ass and saw Ed Hanrahan hiding at the bar, a long time Fragile X advocate from Massachusetts! How bizahhhh! We hung out with Ed and 'enjoyed' the band playing 70's muzak. <br />
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Later that night we enjoyed the fruits of our newest addiction 'Pinterest' - gummy bears soaked in vodka. YUM! Only up until 2 am...maybe later...<br />
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Then of course I can't sleep and am up at 8am. <a href="http://www.cityofportsmouth.com/" target="_blank">Portsmouth</a> is a beautiful old New England seaside town, cobble stoned streets lined with tiny pricey storefronts. We parked at the hotel and walked all weekend. <br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgd2EE9YeDAy6q6VmPlZGgXl3mOIKe_4TTAoSVu-WvaWoEiClPXwSqv8_a-oHxYLkAD2ki2Tsf3aOwmEmr1wuIS6ZTgVXWXC-7wAQZoJqcPD3gv-KNcvPwsV1CdeiZFdK-IYYCb8TPFqrU/s1600/grahams+higgins+FXMOMS+WEEKEND+away+130.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgd2EE9YeDAy6q6VmPlZGgXl3mOIKe_4TTAoSVu-WvaWoEiClPXwSqv8_a-oHxYLkAD2ki2Tsf3aOwmEmr1wuIS6ZTgVXWXC-7wAQZoJqcPD3gv-KNcvPwsV1CdeiZFdK-IYYCb8TPFqrU/s400/grahams+higgins+FXMOMS+WEEKEND+away+130.jpg" width="400" /></a></div><br />
We ate breakfast at the <a href="http://www.thefriendlytoast.net/" target="_blank">coolest and funkiest breakfast joint</a> (the grease smell only lingered in our hair for half the day) and proceeded to walk, shop, talk and eat through the streets of Portsmouth for the entire weekend. <br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNjDvGa8bLK3Km2Mw6A8DQcMoDI7sIVMkasRvUPjSle8UnDJ7kNun6DRGVPUQvugTEnGmXULFzFPSpMKAntj_4YqR-EG6I89rEhZy86NMGaT1kWrpmHCgm9bF6YS7JSTkBdy-4MQndsISv/s1600/grahams+higgins+FXMOMS+WEEKEND+away+135.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNjDvGa8bLK3Km2Mw6A8DQcMoDI7sIVMkasRvUPjSle8UnDJ7kNun6DRGVPUQvugTEnGmXULFzFPSpMKAntj_4YqR-EG6I89rEhZy86NMGaT1kWrpmHCgm9bF6YS7JSTkBdy-4MQndsISv/s320/grahams+higgins+FXMOMS+WEEKEND+away+135.jpg" width="240" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizogrZPBasaXxncZnbxvWNGqvhyWsVUtNhx94xrk9LpynufDnz5p3KM0CB88me5Jd53UCuMsPIntDPIbsFBHdU7WlZXFtS-1sMkk7Wf10kkCo9oQVKtBpkWrkMaPup-MAu7v8lH3aOW4Oy/s1600/grahams+higgins+FXMOMS+WEEKEND+away+138.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizogrZPBasaXxncZnbxvWNGqvhyWsVUtNhx94xrk9LpynufDnz5p3KM0CB88me5Jd53UCuMsPIntDPIbsFBHdU7WlZXFtS-1sMkk7Wf10kkCo9oQVKtBpkWrkMaPup-MAu7v8lH3aOW4Oy/s400/grahams+higgins+FXMOMS+WEEKEND+away+138.jpg" width="400" /></a></div>The strange thing after hanging out with everyone for a while is it's tough to figure out who's the bigger bitch - I mean 'most assertive woman.' I found it interesting all the women are very opinionated and don't hesitate in direct requests. It must come with the territory - you have to speak up to get what you want for your kids, or else they won't get it. If you aren't an advocate, you'll have to become one.<br />
It's also strange because we only know the 'post FX' women, not the women we were 'before' this whole waved crashed on us. I'm always curious to know the women inside the moms. <br />
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Requisite bathroom shot with the flamingos, of course. I'm still 13 years old deep down. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYiFOuPHNCtrzssgDljREbVGuTEKCMa17M8n1GHZL6QYTab6aCEzRhaMsYo6hSVDmaKoIDy3ft97PedT6l9HBqshK1K9UmJJ5RsyoWRu1tfAVmMyGbc5sr7tE7ZG-4U1GgmLRjwuiQvE9g/s1600/grahams+higgins+FXMOMS+WEEKEND+away+146.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYiFOuPHNCtrzssgDljREbVGuTEKCMa17M8n1GHZL6QYTab6aCEzRhaMsYo6hSVDmaKoIDy3ft97PedT6l9HBqshK1K9UmJJ5RsyoWRu1tfAVmMyGbc5sr7tE7ZG-4U1GgmLRjwuiQvE9g/s400/grahams+higgins+FXMOMS+WEEKEND+away+146.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdMA_VwQ1aZ9qccok3N267DTy0PeZ9mPF2IXkw9XusvK1wh0kdryQcxtFLspETZix6v1MGMlWyWaYaL_lIg2K4w4w7l4Hjgzkq4J_CSx2SHe0MzfLfMAxzZ6XzW95wtBMuxR4-VgLRq6nS/s1600/grahams+higgins+FXMOMS+WEEKEND+away+145.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdMA_VwQ1aZ9qccok3N267DTy0PeZ9mPF2IXkw9XusvK1wh0kdryQcxtFLspETZix6v1MGMlWyWaYaL_lIg2K4w4w7l4Hjgzkq4J_CSx2SHe0MzfLfMAxzZ6XzW95wtBMuxR4-VgLRq6nS/s320/grahams+higgins+FXMOMS+WEEKEND+away+145.jpg" width="320" /></a></div><br />
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Caution - must love shopping to hang with this gang.....Store after store after store after store. Naps were needed by some...<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5_hF12pTqMQVd0JqM4IR2Ex_OWnu8KMeAi1KazULU5_jRD3hJa60Dvcv-lqmMbjQ_F7JxbNHTTYmFU3r5cVT0gEkDvcXXtWX1I4X0mSd2kJzqxrNwcx1Yav8Om6x-vPG3SJQQU_nQtPJb/s1600/grahams+higgins+FXMOMS+WEEKEND+away+149.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5_hF12pTqMQVd0JqM4IR2Ex_OWnu8KMeAi1KazULU5_jRD3hJa60Dvcv-lqmMbjQ_F7JxbNHTTYmFU3r5cVT0gEkDvcXXtWX1I4X0mSd2kJzqxrNwcx1Yav8Om6x-vPG3SJQQU_nQtPJb/s320/grahams+higgins+FXMOMS+WEEKEND+away+149.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrGh413H_lJZ1hvS_NKpG9EcktEQ6n6tpjop5ZV6fsIR-pPlJOOo8GadvOWpU8WybGd1P20OTTwIEaCPsPmWk50p9Awvhv2AR6x7k9tBqT1cq0oWm_3dyuvUmGCVF4fFTJClXVO59sLjIU/s1600/grahams+higgins+FXMOMS+WEEKEND+away+150.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrGh413H_lJZ1hvS_NKpG9EcktEQ6n6tpjop5ZV6fsIR-pPlJOOo8GadvOWpU8WybGd1P20OTTwIEaCPsPmWk50p9Awvhv2AR6x7k9tBqT1cq0oWm_3dyuvUmGCVF4fFTJClXVO59sLjIU/s320/grahams+higgins+FXMOMS+WEEKEND+away+150.jpg" width="320" /></a></div>Cecelia insisted on a palm reading and Aimee had hers read also. The rest of us listened intently in the waiting room as the 'pyschic' was <u>clearly</u> grasping at straws - or at least her ball was foggy that day - as she told them their 'children were academically advanced' and asked "Are your parents sick?" "No" "Well, they will be."<br />
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As we were departing and trying to not outright laugh in the charlatan's face, Cecelia rummaging through her purse for her wallet - Aimee quipped "I foresee your wallet getting lighter!" <br />
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At least I made it out the door before snorting. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHqcMsClF3aJGjrFlU6Y-OprAaMhbugits2NEq55VO_N7Xq5LCyPkLVr8XMgrtdxxfLBbfsSMAsDKxJkEVReUSHKQrZKrMajH_2KZeMCnqR66-uymex2D1DVbspnR6nOpCEqCgJtBwR36l/s1600/grahams+higgins+FXMOMS+WEEKEND+away+141.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHqcMsClF3aJGjrFlU6Y-OprAaMhbugits2NEq55VO_N7Xq5LCyPkLVr8XMgrtdxxfLBbfsSMAsDKxJkEVReUSHKQrZKrMajH_2KZeMCnqR66-uymex2D1DVbspnR6nOpCEqCgJtBwR36l/s200/grahams+higgins+FXMOMS+WEEKEND+away+141.jpg" width="133" /></a>Saturday afternoon I attempted to ban any talk of children or bodily functions/fluids (UNLESS it was your own)....so you know what we ended up talking about...political and religious debates....yeahhhhhhhh suuuuuuuuuuuuurre. Honestly, I can't disclose the subjects as to protect the guilty. <br />
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Good motto for us all...<br />
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Saturday night and dinner at the waterfront <a href="http://www.riverhouse53bow.com/" target="_blank">River House</a>....<br />
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"Mainly Blues" drinks.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbvkK63QQiRJ6ZiO3Flz_7NfajkOsjIB31xsRrMjae2LeT9Bc-2RZBGfKvzr0NhZj9ovs6FAv7MHXyl4xRDRKgzXwLEEsgu7wkUtt-uBxc_uqvMfq4KX5Ixi_iYgNMXpAbshD0NqS0zn_j/s1600/grahams+higgins+FXMOMS+WEEKEND+away+157.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="282" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbvkK63QQiRJ6ZiO3Flz_7NfajkOsjIB31xsRrMjae2LeT9Bc-2RZBGfKvzr0NhZj9ovs6FAv7MHXyl4xRDRKgzXwLEEsgu7wkUtt-uBxc_uqvMfq4KX5Ixi_iYgNMXpAbshD0NqS0zn_j/s320/grahams+higgins+FXMOMS+WEEKEND+away+157.jpg" width="320" /></a></div><br />
The view from our hotel rooms, overlooking downtown Portsmouth and Market Square...Only up until 2 am...or later...once again. So much for catching up on sleep! <br />
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Brunch our final morning at <a href="http://www.bluemermaid.com/" target="_blank">The Blue Mermaid Restaurant</a> - Can you feel the love? Husbands frantically texting "When are you coming home?" and NONE of us wanted to leave. We had a relaxing wonderful weekend, laughed our asses off, and completely enjoyed each others company. Strangers become friends.<br />
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If we ever all happen to 'coincidentally go missing' at the exact same time, we will NOT be living in a sister wives commune in NH. DO NOT look for us there (or anywhere tropical....).<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-3AYEgb0HFHmIeu-xQGw-SjlRqIkaq7n8rbD5j4zEq6asj3YWXWHi9JMUUTJKv3EFbATcynm8c9SXXT90v1kF8lmh-V4RTF2FfMwrKjCkn456U7-zjg2CGESdiYgImR7-I6qrjc4OwqST/s1600/grahams+higgins+FXMOMS+WEEKEND+away+169.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-3AYEgb0HFHmIeu-xQGw-SjlRqIkaq7n8rbD5j4zEq6asj3YWXWHi9JMUUTJKv3EFbATcynm8c9SXXT90v1kF8lmh-V4RTF2FfMwrKjCkn456U7-zjg2CGESdiYgImR7-I6qrjc4OwqST/s400/grahams+higgins+FXMOMS+WEEKEND+away+169.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love these ladies. </td><td class="tr-caption" style="text-align: center;"><br />
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com25tag:blogger.com,1999:blog-2732986029734064376.post-4278524664079139372012-02-07T22:37:00.009-05:002013-02-14T10:35:44.627-05:00Happiness.Sobbing hysterically in my therapist's office in September of 2010, I cried "I'm never going to be happy again." It was unfathomable to think I could ever experience joy again. She looked at me (a little too smugly if you ask) and said "Oh, yes, yes you will." I thought 'LADY you have no friggin idea - but if so what do you know, and can I get a written guarantee?' But she did know. The reason I was sitting in her office in particular was because when she called me back to possibly schedule an appointment, she said "I know what Fragile X is. My best friend's son has it and she wrote a book about it." That was all I needed to hear, and it turned out that reading that book was what started to help change and reframe my life.<br />
<a href="http://www.amazon.com/Spelling-Love-Mother-Gene-Binds/dp/B004JZWP0A/ref=sr_1_1?s=books&ie=UTF8&qid=1328634341&sr=1-1" target="_blank">"Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them, "</a> Claire Dunsford wrote about her struggles both scientifically and poetically, and I related to her need to express the depth of her grief and curiosity of genes and families. I started my blog soon after, just for me, then I sent the link little by little to a few friends and family. One year later, it became published publicly. Am I crazy to disclose my inner suffering pain and shame to the world? Why yes, yes I am. Here's why.<br />
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Before, I couldn't understand parents like the <a href="http://belikebrit.org/" target="_blank">Gengel's</a>, who had lost their beautiful daughter in the Haiti earthquake - how could they be so active so soon after her death, helping others and building orphanages? I would think "I would just lay in bed for <u>years</u> and cry." How do you survive the loss of a child? <br />
Now, I get it. Not completely as to the depth of their grief, <u>I wouldn't compare</u>, but to the similarity to a deep loss for your child and their future. The part of you that will forever be broken, the part you don't 'get over' but learn to live with. Everyone says, "As long as my kids are ok...." and when they're not - well, freedom's just a word for nothing left to lose. I can't change it, I have to live with it. So, life can't wait. There will be no, "Once the kids are a little older...graduate high school...go to college....get married." I can't wait for my life to begin so I have to live it now - and since Owen's diagnosis, I have been the house of Y.E.S. Yes, I'll be on the committee, become a member, go to your party.<br />
I notice this with my other FX mom friends - many are busy exploring a diversity of interests and also make time for themselves, nights out and soon, for us local moms, our FXMoms' weekend away (real woot!). We all make the time NOW - our kids may never sleep through the night, be able to be unsupervised, grow up, out and away - we can't wait. The time for fun is now. We easily, no guilt, ditch the kids and leave them at home with our husbands. I'd like to know how many moms could truly do that. NO. GUILT.<br />
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I have to work this whole 'happiness' thing - can't wait for the damn bluebird, have to hunt the thing down and capture it. I have to make a conscious effort to make decisions that will make me happy, including all the small yet important daily stuff, minor joys like a new scarf, lattes, sitcoms, library books and dancing with the music up.<br />
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I have to say yes, seize opportunities, why the hell not? SURE I'll open a business, join an advisory board, agree to public trainings? And why not sign us up for 6 monthly cross country trips for research? Start a dining club? Yes yes yes. Disclose the most painful part of my life to the entire world for scrutiny? Why not? <br />
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Really, you can't take any more from me then I've already lost. It's easy to take risks when you've lost big. All the cliches are true - life is short, life won't wait....life is fragile. You either let it stop you or push through it and fight, head down and with no fucking idea where you're going but always moving forward. No guarantees, no idea, but can't wait and today better be good. Will I ever be happy again? Trying.<br />
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I'm heading to Washington in early March for <a href="http://www.fragilex.org/public-policy-and-legislative-advocacy/advocacy-day/" target="_blank">Fragile X Advocacy Day</a> due to 'recruitment' by pushy/fantastic FX friends - and let's face it - how am I supposed to say 'no' to advocating to my son's future? That is the truly meaningful part. So yep, I'll do it, I'll show up, I'll write, I'll risk it, I'll go. Jump in, jump in NOW.<br />
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com28tag:blogger.com,1999:blog-2732986029734064376.post-91293847094374623042012-01-27T13:03:00.003-05:002012-01-27T15:17:36.272-05:00So I turned myself to face me.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYb4xiwc1hwT8IvMKko5SCR6MC1fNdh4XA5zJRJ1PmJqMi2bNwdmcbcsLGnMbExeM9UqwjioB323fJthNkIsGkdCSQ-v3iySBmw3covgHSho3jbu5tvmeM23y70Aj6_-knG6-NSQNO7tns/s1600/IMG-20120106-01082+%25284%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYb4xiwc1hwT8IvMKko5SCR6MC1fNdh4XA5zJRJ1PmJqMi2bNwdmcbcsLGnMbExeM9UqwjioB323fJthNkIsGkdCSQ-v3iySBmw3covgHSho3jbu5tvmeM23y70Aj6_-knG6-NSQNO7tns/s1600/IMG-20120106-01082+%25284%2529.jpg" /></a></div><br />
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This is a copy of what comes home with Owen every day since he has transitioned into the 'Orange Room' (or ABA room). My favorite part (and there is MUCH to like on it) is "He was invited to play basketball with friends and participated (happy face!)" Yay!! Not to mention love the aide's enthusiasm.<br />
O was originally in an inclusion class in the morning, and a different substantially separate class in the afternoon, and I was concerned what would happen to his friendships and routine by switching classrooms (the afternoon one, specifically) half way through the school year. His *awesome* school has adapted his schedule so he still has circle time with his friends in the afternoon, does all his school work in the Orange room, and is still in his inclusion class part of the morning. Whew! No wonder why he is asleep by 6pm! This transition has also meant he now has one aide all day (as opposed to one in am/different one in pm) and she has received extra training in behavior management as well knowing him well from being with him all day, every day (SHE will DEFINITELY get a gift!)<br />
The Orange room also means a schedule of full day/5 days, as opposed to now - he has been full day/4 days. Maybe it seems like only a small difference, but it <u>feels</u> like I'm sending my baby away early, when this is the time we are supposed to still have together! Mommies and babies! He's only 3! And I've been clinging to the fact that hey, at least we still had our Mondays together. But I know that in school he learns, receives treatment, has many friends, and <u>grows</u>. I KNOW it is really the right place for him for him to be - development during the younger years is crucial, the more stimulation and learning the better for the child.<br />
But as of Monday both my children will be in school full time - a year and a half too soon! How did that milestone happen? That is MY milestone!! It just kind of slid in there, unnoticed, like a letter from the IRS disguised as innocuous junk mail. I should have known better, it IS still January, bastard. Taunting me like Nelson, I'm still here, HA ha.<br />
<br />
I'm just sad that they get him early because <u>I'm</u> <u>not</u> <u>ready</u>. But look! Look how awesome he does there. It's what's best. Damn, this crap really DOES hurt me more than it hurts him. (I know. Give me a month and I'll be rejoicing full-time school. Or at least give me until 10 am Monday.)<br />
<br />
<br />
"Still don't know what I was waitin' for<br />
And my time was runnin' wild<br />
A million dead end streets and<br />
Every time I thought I'd got it made<br />
It seemed the taste was not so sweet<br />
So I turned myself to face me<br />
But I've never caught a glimpse of<br />
How the others must see the faker<br />
I'm much too fast to take that test<br />
<br />
Ch-ch-ch-ch-changes<br />
Turn and face the strange<br />
Ch-ch-changes<br />
Don't want to be a richer man<br />
Ch-ch-ch-ch-changes<br />
Turn and face the strange<br />
Ch-ch-changes<br />
Just gonna have to be a different man<br />
Time may change me<br />
But I can't trace time<br />
<br />
I watch the ripples change their size<br />
But never leave the stream<br />
Of warm impermanence<br />
So the days float through my eyes<br />
But still the days seem the same<br />
<b>And these children that you spit on</b><br />
<b>As they try to change their worlds</b><br />
<b>Are immune to your consultations</b><br />
<b>They're quite aware of what they're goin' through</b><br />
<br />
Ch-ch-ch-ch-changes<br />
Turn and face the strange<br />
Ch-ch-changes<br />
Don't tell them to grow up and out of it<br />
Ch-ch-ch-ch-changes<br />
Turn and face the strange<br />
Ch-ch-changes<br />
Where's your shame?<br />
You've left us up to our necks in it<br />
Time may change me<br />
But you can't trace time<br />
<br />
<b>Strange fascination, fascinatin'</b><br />
<b>Ah, changes are takin'</b><br />
<b>The pace I'm goin' through</b><br />
<br />
Ch-ch-ch-ch-changes<br />
Turn and face the strange<br />
Ch-ch-changes<br />
Oh, look out you rock 'n' rollers<br />
Ch-ch-ch-ch-changes<br />
Turn and face the strange<br />
Ch-ch-changes<br />
Pretty soon now you're gonna get older<br />
Time may change me<br />
But I can't trace time<br />
I said that time may change me<br />
But I can't trace time"<br />
D Bowie<br />
<br />
and one more quick one, this one has been stuck in my head for WEEKS...<span class="st"></span><br />
<i><span class="st">"But time makes bolder, children get older, I'm getting older too....yes I'm getting older, too..."</span></i><br />
<br />
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</script>Kathleen Quinnhttp://www.blogger.com/profile/02490775018332263049noreply@blogger.com13tag:blogger.com,1999:blog-2732986029734064376.post-75167444428492674892012-01-24T12:18:00.003-05:002012-01-25T08:46:09.592-05:00Could words change the world? (I like to aim high).<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVl5fWEZwHwpQgRCi3iXpz8K5DDYAg4OXRyHwpt1gtNUZBVNcV9Lyxgfz1z_o6iOLKpxFfLn2JevLj8fImqPCgTDFPGzniTrO_G2t2uI6PDqkQQ-NrrUsY027MHOubK_iMjtlNEu6s_xSc/s1600/Deb+photo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVl5fWEZwHwpQgRCi3iXpz8K5DDYAg4OXRyHwpt1gtNUZBVNcV9Lyxgfz1z_o6iOLKpxFfLn2JevLj8fImqPCgTDFPGzniTrO_G2t2uI6PDqkQQ-NrrUsY027MHOubK_iMjtlNEu6s_xSc/s320/Deb+photo.jpg" width="320" /></a></div><h6 class="uiStreamMessage" data-ft="{"type":1}" style="font-weight: normal;"><span style="font-size: small;"><span class="messageBody" data-ft="{"type":3}"><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">This is my friend Deb - we went to high school together a long, long, time ago. LONG time ago. Deb is awesome in many ways - she just turned 40 and </span><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif; font-size: small;"><b>rocked</b></span><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"> it (see above, hee hee, love you Deb!), she's raising three teen boys, one who just started college, and she herself is working towards her bachelors degree. Deb and I have recently reunited thanks to facebook and gulp, our 20th high school reunion (yep, that's right, I said it. We're talking decades people). She recently sent me this email - and </span><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif; font-size: small;"><u>this email</u></span><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">, people, is the reason why I keep doing writing this blog. I do it for me, I do it for the moms who feel less alone, and I do it for this, for the off chance that it may actually change someone's way of talking, or thinking, or even make a difference in someone life. </span></span></span></h6><h6 class="uiStreamMessage" data-ft="{"type":1}" style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody" data-ft="{"type":3}"> "Hey you rock for being a strong enough person to put that article out there and express your true emotions instead of being PC!! I have a lot of respect for you. Here's how what you did POSITIVELY affected me and my family. My kids commonly used the word retard or stupid when talking to each other or friends. I would do the normal mom thing and say "stop that, it's not nice" etc. And they would look at me like like 'whatever' and roll their eyes. After reading your article I thought about how commonly we all use those words without thinking about the impact they have, or how there are lots of people with learning/mental impairments and that it wa<span class="text_exposed_show">s disrespectful to them. I decided to take the "don't say that" a step further and had my kids read the <a href="http://www.baystateparent.com/find-a-copy/the-archives/November-2011-baystateparent-Magazine-132694293.html" target="_blank">article</a> in Bay State Parent. They came away with a better understanding of why they shouldn't talk like that and had an increased level of empathy for kids like Owen. Now that they were able to put a face to it all they don't use the word. My son Michael came home from school the other day and told me about kids teasing another kid for not being able to read very well. They used the word retard and all Mike said he thought about was Owen, and his story, and how the kid they were making fun of probably felt. He said he told the kids to knock it off and sat with the boy to try to help him! That Kathy is because of YOU and the wonderful article you wrote!!! And I'm sure there are lots more of that happening out there that you don't hear about because you raised awareness! Remember that next time someone rants about what you said or how you chose to express yourself!!!"</span></span></span></h6><h6 class="uiStreamMessage" data-ft="{"type":1}" style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody" data-ft="{"type":3}"><span class="text_exposed_show">Thank you Michael, thank you so much. You have no idea the hope that you put in the hearts of moms like me everywhere. You are strong to stand up and be heard when others say nothing. Keep being brave, your mom should be so unbelievably proud of you, and of herself for raising a young man like you. </span></span></span></h6><h6 class="uiStreamMessage" data-ft="{"type":1}" style="font-weight: normal;"><span style="font-size: small;"><span class="messageBody" data-ft="{"type":3}"><span class="text_exposed_show"><br />
</span></span></span></h6><br />
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