Tuesday, November 29, 2011


I'm ambivalent about the backlash I knew my article in "Bay State Parent Magazine" and my blog could create, and I am angry at myself for being sensitive to the criticism. I thought I was tougher than that!  I'm surprised by how much it's bothered me and mad I feel the need to defend myself.  Please see the letter below...
  "As a parent of a young man who is on the autism spectrum and is very severely disabled I was interested in reading this article.  I was unable to finish because of the vulgar language. I am referring to the four letter word that begins with "f".  This is supposed to be a magazine for families and this language is inappropriate.  As a magazine that is supposed to be the best parenting magazine I fail to understand how you could not ask Kathleen Quinn to use more appropriate language.  I have been advocating successfully for my son for 18 years and even taken a course to become an advocate. One of the lessons that we learned from an attorney who works for the premier law firm in Massachusetts representing the rights of the disabled is that parents must always stick to the "high ground".  If we are to be taken seriously when we advocate for our children we must be professional at all times.  Kathleen fails and you have failed by allowing her to use such language. It is possible to use strong language without being vulgar. My husband and I once wrote an article that was published in "Exceptional Parent Magazine", a national publication.   We successfully conveyed to the public the difficulties of having an autistic child without using vulgar language."

Smackdown! That lady was MAD! Let me clarify people, my blog is mostly INSIDE THOUGHTS.  It's my stream of consciousness reaction to "the diagnosis" (dum dum dummmmmm) and that part of my life ever after.  HOWEVER, on the outside, I look like a walking talking typical person who has a couple jobs and raises their kids and resembles a completely reasonable and responsible human.  I am a whole person, many sides, and this blog is a reflection of a PART of me, but certainly not all of me.  My son is not defined by his diagnosis and neither am I.  There is PLENTY I don't write about here.  Also, I'm not walking throughout my day spouting f-bombs at any random sailor who crosses my path!!!  Fer christ sakes who the fuck do these people think I fucking am???  My friend Stacey, who also has a son affected by Fragile X, responded to this when I posted the email and my sad feelings about it in our private facebook forum.
 "It's wonderful her article was published in "Exeptional Parent Magazine", a national publication and s*#t!!! I need REAL F*&&*g parents with real F*(&^*g feelings. You can't tell me this Martha Stewart b(*&h has NEVER had a day when she just asked "WHY F(&*^%G ME!!!" Whatevs......"

I edited that so I wouldn't offend anyone.
You can see why I really like my new Fragile X mom friends ( and THEY all liked my article).  I guess I won't be winning any awards to "Wicked Super Awesome Parents Magazine" nor "Employee of the Year" or "Student of the Week."   My instinct is to buck the trend, fight for the underdog, and speak up for what I believe in, even if that isn't what people don't want to hear.  Truth hurts and I do it myyyyyyy wayyyyyy. (I've reverted to cliches, you know I'm upset when...).   I won't post the many emails I've gotten from women and other mothers who have all said variations on the same thing "You said how I feel."   All living with the same rotten internal guilt, and the anguish that they have somehow ruined their family.
I felt bad, and 'wrong' because I felt scolded - "You took the low road.  You didn't grieve appropriately. You're a bad person."  Oh sure, that's not what she SAID, it's what I HEARD.   And from people who have been through it! I thought they would be older and wiser, I would have hoped for identification, understanding, empathy.... I'm barely two years into this, but me a break.  It's easy to look back on twenty years and see the 'meaning and purpose' of it all, but I'm not a damn pyschic and I have no idea what is my role to play in the docu-comedic-drama except mom, wife, social worker. This blog wasn't initially public and it was never meant to be, but now that it has - become - something - I have to take a breath and let it go.  All I know is what is right NOW, and what is NOW is telling me that my voice matters, it  has a purpose, and it resonates with others who are fighting internal battles because of external ones.   Those people are what motivate me to continue to say the unthinkable.  All day I tell people "Be real. Assert yourself.  Take care of yourself.  Stand up for yourself.  Do what you need for you."  I gotta practice what I preach.  My high road is honesty, however brutal. 

I found myself obsessed with the complaint emails, so I did what I have learned to do, which is to turn to someone experienced and who could offer some tried and true experienced advice.  I turned to the self dubbed "Queen of Hate Mail" local columnist and role model, Janice Harvey,  of Worcester Magazine,  who was so kind as to reassure that her hate mail bag overfloweth and remarked "I always say I'd rather provoke than soothe."  Now that is my kind of lady.  There is no yin without yang, comedy without tragedy, and opinion without an assho....oh wait, wrong cliche - opinion without an opposing one.  You know you've made it when you've affected someone to the point they take the time out of their busy day to sit, formulate and type a complaint.  I've provoked.  My ambivalence kicks in because I'm also sad when it appears someone misses the message of what I's trying to say, but I should know that comes with the territory.  Next up,  I'll ask Madonna or Lady Gaga what it's like to be persecuted for their art.  

I'll fight for my kids, plan, schedule and attend all meetings and appointments, be presentable and reasonable but probably have a a slight gleam of crazy in my eye that I can not control. I'll go to work, do my job(s), and parent my kids without breaking into hysterics.  HOWEVER, it is my prerogative to write how I feel and what I think, and this forum gives me a place to do so, the place where I say all the things I strangely never say out loud.   I've found the only way to get off the hamster wheel in my head is here - I let it out, am relieved, and go about my business like a regular lady.  You'd be surprised how quickly I forget my posts after I write them, it's part of the coping called 'compartmentalizing.'  I vent here, feel better, and it's gone.  

I received a message on facebook from a casual high school friend I have seen regularly for the past year and a half, both coincidentally and while planning our high school reunion.
 "I recently read your article in the Baystate Parent. It was very powerful. I never realized the angst and distress you were going through. You did it all with GRACE. I give you and your husband the utmost credit in raising such a happy family. You have given so many people the words that they were and are afraid to say, at least out loud."

That message has been one of my greatest compliments, a testament that I somehow appeared to keep it together at a time I was so internally shredded that I barely remember parts of the past few years.

One of my biggest concerns was how my clients would feel, if the article would change their opinion of me and therefore our therapeutic relationship.  Surprisingly, I've only had a few mention it to me.  One of my teens told me it "validated me" as a therapist, and an adult said "Well, you don't go to a priest for marriage counseling!"  They felt reassured to know that the person helping them was also a person who had dealt with their own life struggles and pain. 
It was amazing to me how clients, even when they have known you for years, think that your life is perfect.  Another client had worked with me for years said, surprise in her voice, "I had no idea you were going through that!"  Good, then I had been doing my job, which is not about my issues, but theirs. 

Another f-bomb complaint....
 "I loved the story "In the wrong chair". It was a genuine, heartfelt story. I could do without the profanity. Although you put a small disclaimer, I did not see it until after reading the story and commenting to colleagues, who all agree the profanity could have been edited out. 

 As my husband said, "There's no way you can hear a diagnosis like that and not think 'FUCK'." Or as my mother said, "...at least 'SHIT' or 'OH NO' or 'PLEASE GOD NO.'"   By the way, I was VERY relieved when even my mother said she loved the article, and told me a coworker of hers who had undergone breast cancer also related to it.  But no, I get it, seriously, some people are offended by my language and it's understandable. It's comparable to reading facebook status posts about running 'marathons' and 'triathlons' and all those other overachieving athletes.  Ugh, disgusting.

Finally, my blog had a recent comment posted on it from another unhappy reader...
 "I have a 22 year old special needs daughter. I have learned more about myself and life than I ever dreamed possible. I would not have been able to type the letters you've chosen for the name of your blog. My son came home from private school one day and proceeded to have a total meltdown that required my having to sit on his legs in order to get him to tell me what was wrong. He finally gave in and said that kids at his school used the words retard and retarded all the time and that he never wants any of them to ever come to our house because they would make fun of his sister. She is our family's gift. She keeps us real." 

I can create an ideal world inside my house, where all is love and puppies and unicorns, literally (the unicorns aren't REAL but we do have millions of them in here).   But outside this house is a real and cruel world, and my kids need to have both the internal strength to face it and the ability to deal with it once they are out there, and part of that is the awareness of what could happen.  What WILL my daughter say if - WHEN - her friends says something like "Oh my gawd, that outfit is so retarded."  Will she suppress it in anger, internalize it, hate herself, hate her brother, hate us? I can't be in denial of what may happen, that won't help.  We can't have ideals without reality, and kids need to learn both. I need to teach her of what may happen outside our house, of ways she can react, or not react.  She needs just as much time and attention at O, she will be as affected by this more than us, in many ways.  We had 37 years without Fragile X, she had 3. 

I posted back to the blog commenter...
"I am sorry your son had to endure that, and I also fear my daughter will experience that also, maybe soon.   As ugly as the words in the title of the blog are, they are also the unfortunate "truth" of how the world may judge him. I hope by yelling back, talking back, confronting people on their use of 'the r-word' - they may stop. And those around us will know, and be educated, and instead of my daughter being afraid to bring her friends to her home, I want her to be proud and happy of her family, unafraid and unembarrassed, but also aware and educated. I want to apologize for hurting you, but I can't apologize for my blog - because it's MY truth - and to do so would be hypocritical. Owen makes my heart sing everyday, and I do not regret him. Ever."


  1. My Favorite Blog (Besides Yours) Is http://www.mattlogelin.com/ He lost his wife within 24 hours of giving birth of his beautiful daughter. He uses the F word A LOT. He is well respected, has done a lot of good work for young widows and has written a book about his experience. Check out his "warning" on his blog. As someone who knows you in "real life", I can speak to your ability to be a professional. Real people swear when things go wrong. Keep being REAL.

  2. so many other things to be outraged over in this world...it seems to me that the discomfort readers feel from reading the "F" word stems from the idea of a mom using it. Mothers don't swear, you know.
    I've worked with kids with Fragile X, that baffling little life-changer, that mysterious chromosonal dirty trick played on the loveliest of families. If my own child had been diagnosed with FX I can assure you, the F Bomb I'd drop in the MD's office would be heard from here to Peru and back again.
    "Retard" is far more offensive than the versatile little "F"...it's a verb! It's an adjective!It's a noun when preceded by "cluster" - "F'd" describes how a parent feels when given the diagnosis of Fragile X. You have my blessing to use it wherever and whenever you like, if it helps you cope in any way. Raw feelings elicit raw language. JANICE HARVEY

  3. Kathleen, We received 3 negative letters and about 10 positive ones. Most stories that we run never generate a single comment. People are just too busy and are not going to write in unless they are moved in some way.Two of the negative letters are from women who are uncomfortable with swearing. That's pretty easy to take. The last woman was so irrational saying that bsp promotes slurs by printing the words, "My son's a retard." She could not see past that line and view it in the context. It's frustrating when people want to express their viewpoint but are not open to others'. That conversation went nowhere.

  4. Kathleen, I just so happened upon your blog because of a comment you left on babycenter... I am a devout Christian, a mother, a wife, have a full time job and I try REALLY hard not to swear for fear my child will think I'm imperfect, and because it's the not so Chrisitan thing to do... BUT I am also human and the "F" word slips out of my mouth more often than I'd admit to. I find your blog delightfully humorous!! And it gives me the comfort of knowing that the stress I put myself through, or so it seems, every day, is normal. So, thank you! And keep writing, please.

  5. Thanks for the support ladies - and Carrie, you are 100% correct, unfortunately my ego gets bruised easily when it comes to this particular topic! I'm working on it...
    And Jennifer, wow, that is praise in the highest to me! Thank YOU for NOT being offended and 'getting' it!
    Laura, thanks for being my 'real' person in so many ways...
    And Janice, you ARE my hero!!

  6. WOW!!!!! I loved what you wrote, and I suspect that those who are too tight lipped/arsed to say, no, not say, shout, FUCK! when they are faced with the fears and struggles we live with on a daily basis, then I suspect that they are 'releasing' in other ways that may not be so healthy for them or their children. I think that I'm a much better parent to my FX'ers because I allow myself to verbally vent and fuck is one of the nicer words I use when I've been confronted with ignorant people who think it's ok to point and stare at my beautiful boys for behaving differently to what they see as 'the norm'.

    I never do it in public places and never in front of the children. I lost count of the times my daughter came home from her 'normal' school in tears because of things other children had said about children like her brothers.

    Good for you Kathleen, you are a breath of fresh air and I only wish there were more people out there who were brave enough to tell it like it is . . . You're a star, keep shining and KEEP UP THE GOOD WORK! ! The more people who are provoked into a reaction, the more people will be made aware of the hurt they cause

  7. I have twin boys, one of whom was diagnosed with FX at 4.5 months. Love your blog, love the article, love your snaps, love your pics of your beautiful son, love that I can hear myself in your words and that validates me and the very real struggle FX moms face, love it! So... fuck everyone else. What the hell do they know about our real lives, the one that isn't all made up and polished for the world? Fuck off and read something else. ...but you know, maybe that's just me.

    1. *HUGE SMILE*! Thank you! I wish I could think of something witty in return but I can't top you! Woo!


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