I never planned on going viral

5 Jan

A long, long time ago…okay, not quite two weeks…I wrote a blog post.  And posted it like I do all my other blog posts, on Facebook and Twitter.  Which maybe, on a good day, would garner me 50 hits.  100 if I’d been quite witty.

But this time, I hit what I guess was blogging gold.  I struck a nerve with many, many people.  Sharing, tech-savvy people, who shared this blog post with many, many others.

So now, not quite two weeks after the blog post being posted?  I suddenly have more cats to herd, in the form of readers and comments.

I am overwhelmed.

Most reactions have been positive.  Many of them have been able to relate, as they walk the walk, and deal with the talk.  Some have decided to play devil’s advocate – which I can actually appreciate.  A few have been rude – which proved that my years of therapy has worked, as I didn’t take it personally.

But I feel like I have to explain a few things.

1 – I never planned on going viral.  That blog post?  Was just a thought in my head one evening, after seeing someone use the word “retarded” inappropriately yet again.  I wasn’t feeling angry or bitter when I wrote it.  Just explaining our side of things.  I never expected it to be read 90+ thousand times within a few days, especially considering before that post, my blog had less than 25,000 views total in its existence.  So forgive any discrepancies – I never imagined it would be so critiqued!   I wasn’t calling for a ban on the word – the word does have a proper definition and usage rights – I was just asking for people to think before speaking.  Which isn’t too much to ask, is it?

2 – my daughter is actually mentally retarded.  There is no shame in that.  There is nothing offensive about that, except how you perceive it. Mental retardation is an actual medical diagnosis still – it’s just not used as much anymore as medical science has been able to put specific labels on conditions.  For instance, thirty years ago or so, many autism cases were diagnosed as MR. Now they know better.  Sadly, medical science is still not advanced enough to explain why my daughter has her issues (cognitive and physical delays, epilepsy, apraxia, hypotonia, strabismus, etc.) despite the extensive testing we’ve done.

3 – I posted how my child doesn’t understand the hurtful use of the word “retarded”.  I was posting this from our own point of view.  However, many people who have developmental disabilities DO understand the hurtful nature of the word “retarded”.  And if they don’t – well, their loved ones sure do.  My three older children are completely aware of any insults hurled at their sister, and it angers and hurts them.  As a parent, there is nothing more hurtful than someone making fun of your child in front of you except watching one of your other kids come off the bus angry and upset because someone made fun of their little sister at school.

4 – I’ve gotten a giggle over some comments saying to the effect that I need to not mourn my loss, that I should accept my daughter for who she is, not let things keep me down, be more positive.  It makes me giggle because if I ever was in any of those places, I left them behind years ago.  Yes, there is a mourning process when your child is first being diagnosed.  In a way, you’re always haunted by the child they could have been. And there will always be a certain degree of worry.

But my daughter is the most amazing creature!  She basically goes through life spreading joy, happiness, hugs, sparkles, rainbows and unicorns.  All while being awesome.  I feel quite lucky that I get to share life with her.

4 – This blog isn’t just about special needs – it’s about our life.  Which includes special needs.  It also includes adjusting to living abroad, trying not to screw up our four kids too much, music, and general babbling.  Which I hope you’ll enjoy!

Finally – at the end of the day, I’m just a woman who’s a wife and mother, who wrote about something that was on her mind one night, and is still amazed at how one little blog post that took me about ten minutes to write has taken off.  I am sincerely grateful to each person who felt it was good enough to share, and thrilled for every new follower.  Thank you!

 

About these ads

167 Responses to “I never planned on going viral”

  1. Kelly January 5, 2012 at 6:54 am #

    I didn’t read any of the comments but I am amazed that anyone could read that post and come away with the idea you were doing anything but celebrating who your daughter is. I loved your post for that very reason.

    • phoebz4 January 5, 2012 at 6:58 am #

      well, I do appreciate those wanting to spread positivity, and who tell me “It’s okay.”, even though I know it’s okay. What I’ve learned about the internet is that written words can be misinterpreted, and reading one blog post only gives you one view of a person. I know what I’m trying to say – but that doesn’t mean another person does, lol! And I know that there are times I’m not perfectly clear. Because Spongebob is playing in the background, slowly chipping away at any credibility my degree in English gives me.

    • Karlene January 6, 2012 at 4:29 pm #

      Thoroughly amazing! I applaud you and your daughter and your family for the happiness and understanding that you have for the word “retarded”…Beautiful Blog…beautiful young woman. Thank you for the post.

    • Nyomi Braniff Madison January 8, 2012 at 11:44 am #

      My sister is a developmentally disabled adult. In the 70’s when i was a child, there was pretty much NO awareness at all. When I say i have heard it all; I have; and the abuse was on me at the time as well. My children are forbidden to utter that word in my presence. I applaud you.

  2. Christine January 5, 2012 at 6:58 am #

    It needed to be said. And you said it well, as you generally do.

    • phoebz4 January 5, 2012 at 6:59 am #

      Thanks Christine!

  3. B08 January 5, 2012 at 7:06 am #

    Good luck and might as well talk about your publishing aspirations while everyone is reading because if you can blog that effectively and that quickly ( wrote that in ten minutes!!) then get lots more fun thoughts posted and shared! We don’t mind if some of the ideas are not fully formed and polished, start sharing them anyway! Food for thought for the people who do enjoy your writing!!

    I think spongebob likely explains why everyone can relate to you– English majors are fewer and far between, spongebob is basic slang lingo

  4. Jenny Deputy January 5, 2012 at 7:06 am #

    “But my daughter is the most amazing creature! She basically goes through life spreading joy, happiness, hugs, sparkles, rainbows and unicorns. All while being awesome. I feel quite lucky that I get to share life with her.” May I steal this quote about your daughter as it so aptly describes my daughter who has Down syndrome?

    • phoebz4 January 5, 2012 at 7:25 am #

      LOL! Sure!

      • Jennifer January 8, 2012 at 7:17 am #

        You described my son to perfection. I tell people that he lives in the perfect world, the way it should be. He is kind to everyone, trusts everyone, and loves unconditional. If we could all live this way, imagine what the world could be like. I thank God, that he chose me to be the mother of such a remarkable human being. How lucky I am.
        Thanks for expressing the feelings of a lot of mothers with special children. People don’t realize how much the misuse of words hurt.

    • yvette January 7, 2012 at 10:06 pm #

      yes, well said ! I say that about my developmentally delayed daughter all the time. She brings us much joy as well and I wouldn’t be who I am today if it were not for her :)

  5. Michelle Mallon January 5, 2012 at 7:12 am #

    I started reading your blog because of your post on the word retarded. I have a son who has autism and dyslexia, his friend is also autistic and some children where we live called my son and his friend the name. He didn’t understand what it meant but was still hurt because he thought it meant that he was stupid and he already has a very low opinion of his abilities. I love reading your blogs, the one about Dora the Explorer was great. You said what you felt and this is why you have people reading your blog, you are maybe saying things that other people don’t have the strength to say. Keep going. I love reading them.

  6. Caroline E. Pollock January 5, 2012 at 7:20 am #

    Awesome job!

  7. Eileen Hegarty (@allovus) January 5, 2012 at 7:29 am #

    Good on you!! With you all the way…

  8. Cindyckbryl January 5, 2012 at 7:42 am #

    Anyone who would critique your beautiful post and who could not see the love you have for your family needs some serious perspective. I am sure this will only continue to grow and I applaud you for your honesty and openness….with the WORLD!!!!

  9. Maddox January 5, 2012 at 7:43 am #

    Yesterday I stumbled across your blog about “Being Retarded’ on FB. This blog was shared on some of my friends walls. So I decided to read it because the “title” stood out to me. When I read it I understood 100% what you was trying to say and all 36 of my friends on FB which were parents of children with disabilities agreed with what you had to say. I’m actually a “Special Education Teacher” and 2 of my stepchildren have disabilities. My stepson has Fetal Alcohol Syndrome and MR and my stepdaughter has Multiple disabilities and she is MR(Mentally Retarded”. I didn’t view your blog as anything negative I saw it for what it was and what I gathered was “A person addressing a worth that is consistently used INCORRECTLY”. As well as your opinion on the word “Retarded” in your household. One thing that children that are mentally retarded have going for themselves is “They can read a persons character very well and they typically are friendly to everyone and forgive others meaning the people that mistreat them” we as typical(normal people) can’t even forgive others for the simple things nor read a persons character as soon as a person enter our lives for the 1st time. I love your Blog keep up the good work.

  10. Carrie capes January 5, 2012 at 8:02 am #

    Your blog was spot on and described my feelings about throwing around the r-word. Its a k ife thru my heart and i often speak up at parties and to kids about its use. I once did not speak to my best friend for over a month b/c she felt i was over to top at her home with one of her friends ( a teacher who called herself retarded about 7 times throughout the evening). I was like, can’t u give me credit for letting the first six go? Anyway, i shared it and was proud to do so. Your blog is my first!

  11. mary b January 5, 2012 at 8:15 am #

    Phoebe,
    If anyone has ever celebrated their children, it is most certainly you, and you have out-tolerated the general public daily. Hugs from the U.S. We miss you!
    Mary

    • phoebz4 January 5, 2012 at 8:24 am #

      Thanks Mary!

      • phoebz4 January 5, 2012 at 8:38 am #

        fyi world – Mary B did those fab photos of my kids all dressed up on the sidebar. Seriously, if you’re in her area, go to her for your family photos!

  12. Erika January 5, 2012 at 8:21 am #

    Phoebe, I always enjoy reading your posts. It helps me to still feel connected with you and your family whom I do miss very much (especially when I go into the coffee shop). It does not surprise me that a post of yours went “viral”. ~Erika

    • phoebz4 January 5, 2012 at 8:25 am #

      Thanks Erika! I miss my coffee shop girls – thank goodness we can all stay connected still thanks to the internet.

  13. Carrie-Fellow Illinoisan January 5, 2012 at 8:33 am #

    I am so glad that God made you Maura’s mom. It’s a match literally made in heaven. I think all of your children are exceptionally blessed to have you walk them through all of the ups and downs of life, regardless of the “labels” we give those peek and valleys. I’m glad you’re confident enough to share your thoughts. Keep it up! (Props to Josh for marrying so well!)

    Oh and BTW, for those of us who know you, Phoebe, you’ve always been viral, it’s only now that technology has caught up with you.

    • phoebz4 January 5, 2012 at 8:36 am #

      Carrie – I am eternally grateful we were chosen to be Maura’s parents and family! And for all my lovely friends who say such nice things about me ;) (And yeah, Josh did do well, didn’t he? LOL!)

      • Shelley January 7, 2012 at 7:35 pm #

        I too have a 27 year old daughter who is MR! After loosing a son @ birth and having a miscarriage 1 year later, I have always felt God gave us Angel (my daughters name) because HE knew we would love, protect and take care of her regardless of her “not being normal”. Having her lead my life in a direction it never would have taken without her!
        Also, as a Special Needs teacher & co-worker once said to me, “What is normal anyway, Angel or Joe Blow walking down the school hall over there picking his nose!”

  14. Jennifer Miller January 5, 2012 at 9:00 am #

    You said something I’ve been trying to put into words for years now. Thank you from the bottom of my heart!

  15. Cindy Ferreri January 5, 2012 at 9:44 am #

    I am just so glad you went viral. I have enjoyed reading your blog and had you never gone viral I would never have found you. If only I could blog like you do about our life which includes adoption and “sound off” on some of the insentive comments hurled our way. I love that you share about living overseas…my sister and her husband live abroad. I have been reading trying to figure out why or what took you over seas. Moving over seas for any reason tells me you and your family are strong and daring. THANK YOU for bloggin and providing some laughs for this stay at home mom of 5!

  16. Olivia January 5, 2012 at 9:51 am #

    Some places to have what you are looking for btw that can explain what is actually going on for her and can help her. Check out NACD.org
    My son is doing this program and his issues are not at severe, but they diagnosed him with Pervasive Developmental Disorder-Non specific=something is up with him and we are not quite sure. NACD taught me that he just has processing issues to where he only processed information visually and not auditorally. Besides the fact that he was processing information inefficiently when it came to reading and writing. He is on a program now that is helping him with these issues. :) Check them out.
    Lov
    Liv

  17. Lisa January 5, 2012 at 9:53 am #

    I stumbled on your blog by following your link on Facebook. Your writing is so clever and witty! I applaud you for taking a stand on this issue. Just wanted to leave you a note to say it touched me and I love looking at all your posts on your blog.

  18. Kelly Cote January 5, 2012 at 10:12 am #

    My 28 year old daughter has down syndrome. I was 19 when she was born and we grew up together basically. She is very bright. She has perfect manners, loves her ipod, her pets, scary movies and the Olive Garden (always spaghetti and meatballs). She will always live with me. And when people use that word it hurts me to my soul. Thank you for your blog

  19. nancy January 5, 2012 at 10:27 am #

    I used your story on my blog at prematuritywithlove.blogspot.com where I was recently verbally assaulted by someone using that term over and over. While I have never actually come out and said my kid is considered “retarded” he is developmentally delayed. He is very smart but with EVERY single sense effected by brain damage and cerebral palsy. I thought your post was just what I wanted all of them to hear.

  20. Tory Zellick January 5, 2012 at 10:32 am #

    I think you totally kick butt…and it was that particular post that led me here. I was hoping to send you a private email, as I have a book coming out soon (3/20/2012) that I believe would help several of your readers. If you are willing to talk further, please contact me at the email below. I read that you also have a book in the works. If it is a witty as your blogs, I would be happy to send my publisher a sample.

    Thanks!

    Tory

  21. Chris Crane January 5, 2012 at 10:39 am #

    Loved the post, love your attitude ! My sons ( on the spectrum) are not like us , To ask them to act, feel and go thru life ( acting) just like us is disrespectful of who they are, wonderful unique people with amazing gifts ! The Crane family

  22. Dianna Chaloupka January 5, 2012 at 10:42 am #

    I commend you on your post concerning the word retard!!! I also have a child with several issues similar to your daughter plus more. Who cares about the people who are judgmental about your postings….they are the ones who probably need to be educated in this area anyway.

    I originally found your blog because it was forwarded to me by one of my MOCK mom’s. MOCK is a group of moms, who all have special needs children and have gotten together to help each other “cope.” We go out with and without our children. We laugh, cry, have fun and support each other. Most of us are greatful for the support we have found with each other.

    You blog is a joy for our MOCK moms to read. It encourages us, makes us laugh and provides yet another bond. I know I look forward to reading it every time it hits my inbox!!! I especially like the one on Dora and am shocked that our group had not thought of that before.

    In the “viral” society we have become, our lives have become open to many we never thought we would “meet.” Unfortunately, many of those people are negative, uptight and biased. Continue to blog without giving a care to those and focus on the ones whose lives you and your family are enriching. I wish you and your family all the best in your “new” home and pray that God will continue to support and bless your family immensely!!

  23. kellie6307 January 5, 2012 at 10:44 am #

    I’m proud of you Phoebe! That is just way awesome! :) It’s posts like what you made that take us a step closer to changing the world.

  24. Cherie Poyner January 5, 2012 at 11:29 am #

    Our daughter (who has Down Syndrome -something she HAS, not WHO she is) is 30 years old and lives independently in an apartment downstairs from us. When she was young, we would be told that she is retarded and I related it to the musical term “ritard” which means to slow the tempo of the music. I realized that she had the potential to learn anything that others could learn…it would just be learned at a slower rate. She has amazed us in the many things she has learned and is able to do!

  25. Elizabeth Vermilyea January 5, 2012 at 11:39 am #

    Phoebe, Having just spent two weeks with Rhonda’s 31 y.o. nephew with autism, i can only echo your sentiments. he spreads love everywhere he goes and is beautifully unaware of people who are rude. He is quite clear about what love is. One of the favorite quotes from this visit…we were on a long drive home from picking him up in Reno and were nearing Bakersfield CA on the I-5 when we were stopped for an hour. Rhonda and i got progressively more bitchy, but Dane was happy just to be in the car with us. when we reached the reason for the delay it was the final clean up of a 6 car pile up. Dane said, “You know, some people just don’t have common courtesy on the road.” Classic!

  26. Alison January 5, 2012 at 12:02 pm #

    I’m a random new follower, so I thought I’d say hi. I thought your post was thoughtful, insightful, and well written. But I decided to follow you because I love your blog title and thought, “she has one more kid than I do, and she seems to have her stuff together…I bet I could learn a lot from this lady!”

    • phoebz4 January 5, 2012 at 12:46 pm #

      I soooooo don’t have my stuff together – it’s all spread out on the floor – LOL! But welcome!

  27. Matthew's Mom January 5, 2012 at 12:08 pm #

    Phoebe,

    I am so glad your blog went viral! My six year old son has moderate MR, Hypotonia, Sensory Processing Disorder, Apraxia of Speech, and Autonomic Dysfunction, and probably other things he hasn’t been diagnosed with yet, so your words resonated deeply within me!

    I was 35 when my son was born; he was my miracle baby since I was told all my life that I could never have children. I had a normal pregnancy, and other than gestational diabetes and hypertension, all looked fine. When Matthew didn’t start reaching his milestones, we started early intervention. He received physical therapy, speech therapy, occupational and developmental therapy from the age of 18 months to now. We’ve had him poked and proded every which way to Sunday. I’ve filled out so much paperwork that I’ve probably cut down a small forest. The doctors, therapists and geneticists all say his blood work is normal, MRI is normal, growth is normal, except he is not “normal”. They don’t know why he is the way he is, but I’ve accepted it as God’s will.

    Matthew has opened my eyes to a whole different world; one where compassion truly lives. I have met so many wonderful people through our unique challenges, and have forged strong relationships with people that truly “get it”. I’m glad Matthew has so many people in his life that care for him and look out for him. He brings a smile and joy to every single person he meets!

    I look forward to reading your previous blogs! Keep it up, and again, thank you!!!

    Nicky – Matthew’s mom and strongest advocate

  28. Renee Anne January 5, 2012 at 12:48 pm #

    Oh honey, you hit gold with the entire special education system (and most of the general education system) with that post. A fiend of mine from high school shared the article on FB…she’s a teacher…she got it from one of our other friends, who is also a teacher.

    I plan to share it via FB and maybe hit people that aren’t teachers but who have children of their own (disability or not).

    Expect that one to keep going and going for awhile.

  29. Kelly January 5, 2012 at 1:37 pm #

    All I can say is thank you, thank you, thank you. For the life of me I do not understand why people use that word in a derogatory way. Maybe they don’t love someone who is mentally retarded. Too bad for them, because once you do, you’ve been given a very special blessing to know a person who has a unique kindness, a heart of gold, and not a mean bone in their body. We can learn so much from them. THANK YOU!

  30. Melissa Russell January 5, 2012 at 1:47 pm #

    I found your blog through a Facebook post. I love it! I have shared your blog on the word “retarded” with my 10th and 12th grade English students and so many of them have told me that their view of that word has changed greatly. I would love to create a lesson plan that included that blog post if you will allow me to.
    Your positivity is infectious – keep it up ;)

    • phoebz4 January 5, 2012 at 2:35 pm #

      That would be fine – just make sure I get the credit ;)

      • Melissa Russell January 6, 2012 at 7:58 am #

        Definitely :)

  31. Carisa January 5, 2012 at 3:13 pm #

    I havent had a chance to read comments on the other post but I have to laugh at the thought of someone saying things like “don’t mourn your loss, that you should accept my daughter for who she is, don’t let things keep you down, be more positive” to you! Maybe because I “know” you but that just really cracks me up. I’ve always found your outlook on the challenges that you’ve been faced with inspiring. You’re the last person I’d ever think of “not accepting your kid for who she is”.

  32. natsera January 5, 2012 at 3:46 pm #

    I have worked with a variety of developmentally disabled (?) intellectually delayed (?) cognitively impaired (?) (think of more euphemisms) children and young adults, and yes, I think the major issue of importance is for all of us to recognize what wonderful human beings they are, and how they function within their limitations. I remember large 17-year-old Annie getting hysterical because we were trying to get her out of the pool — it was time to get dressed and go back to school, and she simply couldn’t understand what time meant — all she knew was that she loved being in the pool. She wasn’t being a bad girl; she was just protesting that she didn’t want to stop doing what she loved.
    As far as myself, I have zeroed in on the areas where I actually AM challenged — I can’t find places, even when I have been there many times, so I tell my friends I am geographically challenged — and they are very good about taking me places so I don’t get frustratingly lost over and over again. I’ve also been folk-dancing for years, but can’t remember a step 2 seconds after I’ve done it, although I follow very well. So I just tell them I have a poor kinesthetic memory, although I have extremely good visual and auditory memory! They are all very understanding, and always whispering to me what comes next. :-)
    So it doesn’t bother me that I have limitations (I actually consider it a good humility lesson), and little Maura and sweet Annie are just somewhere on that same spectrum — I just think that we need to recognize that all of us have gifts AND limitations. And it fills my heart with joy that you recognize Maura’s gifts! :-)

  33. Jessie January 5, 2012 at 3:50 pm #

    I read that post and nearly cried, I would say that daily and not think twice about it is just what people around me have always said. I just never even thought twice about it. I feel like such a jerk now!! I will never use the word “retarded” like that again, I honestly feel like a terrible person. It is kinda like when someone says “gay” when they mean “stupid” you could say…
    Again, thank you so much!!!!!

  34. Jessie January 5, 2012 at 3:51 pm #

    I read that post and nearly cried, I would say that daily and not think twice about it is just what people around me have always said. I just never even thought twice about it. I feel like such a jerk now!! I will never use the word “retarded” like that again, I honestly feel like a terrible person. It is kinda like when someone says “gay” when they mean “stupid” you could say…
    Again, thank you so much!!!!!

  35. QuakerDave January 5, 2012 at 4:35 pm #

    I teach 7th graders, who use this term waaaaaay too often, and I always call them on it because, amongst other reasons, my niece is autistic. I was wondering if you would mind me sharing your post with them. I think it might reach a few.

    • phoebz4 January 5, 2012 at 5:39 pm #

      That would be fine! Make sure you include how even if she doesn’t understand the hurt, her siblings are offended for her. Actually, my 11 year old daughter was offended when her friend’s disabled brother was made fun of by one of her classmates as well. There’s a whole trickle-down effect that isn’t always seen.

  36. Marianne January 5, 2012 at 5:29 pm #

    I, like everyone else, read your post on Facebook. It brought tears to my eyes, in fact, reading this post brought tears to my eyes. I have an 11 year old daughter with “intellectual disabilities”, Mary, is my 4th child. I felt as though I was reading about my own life! I know exactly where you are coming from!.

  37. Laura Smith January 5, 2012 at 5:57 pm #

    Beautiful family! Your post reminded me of something that happened last school year… I am a Special Education teacher and after a conversation with one class of mostly 9th grade boys who frequently use the “R” word, we brainstormed about coming up with a new word to say what we mean. After putting a graphic organizer of our ideas on the board, the awesome kiddos decided that from now on they would use a new word to describe something as stupid or silly: “RIDICULAME”- a clever combination of ridiculous and lame! I was so proud of them and assigned them the homework of spreading the new word. Thank you for your wonderful blog!

    • JoyRobbins January 6, 2012 at 10:57 am #

      I commend you for brainstorming with your ninth graders on finding another more suitable word.. I’m just not sure “ridiculame” was the right choice.

  38. Michelle January 5, 2012 at 7:33 pm #

    Hi – I too came here from facebook for your ‘retarded’ post. Awesome work. Also, just in case someone else hasnt already poined it out – you are already a published writer :)

  39. valmg @ Mom Knows It All January 5, 2012 at 7:41 pm #

    You deserve for it to have gone viral.
    And it deserved to be viral.
    May it play on and on and on.
    You can count me as another new follower.

  40. Aimee January 5, 2012 at 8:21 pm #

    Thank you. Thank you. Thank You for your beautifully written post about the word Retarded. Our daughter is 11 years old and we have been searching for help for over 7 years, last year after an extensive stay in a pediatric Neuro-pychiatric hospital we FINALLY got her diaganosis of Mental Retardation- Not ADD, Not obstinate, Not suffering from a mental illness and NOT BAD.. Our sweet girl suffered for so long that by the time of her hospitalization she was causing cutting herself, had become almost totally non verbal and was “hearing a bad brain” telling her what to do. Al because she could not make sense of the world as it was being presented her. Since last January with proper placement in an amazing school and support for her and our family she is doing so much better. As a woman and a mother I have felt so isolated and alone with so many not understanding our journey. I have suscribed to your blog and am so thankful someone posted your post on Facebook. Thank you again for sharing your gifts.

    • phoebz4 January 5, 2012 at 8:25 pm #

      you’re welcome! I am so glad you’ve een able to find a great school! Good schools are such a blessing!

  41. Dramamambo January 5, 2012 at 8:23 pm #

    First, Maura is beautiful. I can tell by your writing that she brings joy to all around her. That’s her gift. Second, you have inspiried my daughter to use this as a lesson in her 6th grade classroom. This very important message will be shared, hopefully, around the world. Bless you.

    • phoebz4 January 5, 2012 at 8:32 pm #

      oh, thank your daughter for me! That is so awesome of her!

  42. Jacquie Jackson January 5, 2012 at 8:29 pm #

    Amen sister. I was glad to read the original post and was guilty of sharing it with anyone I could. My son has apraxia and the more understanding there is in the world the better this world will be.

    Thank you.

  43. Amanda January 5, 2012 at 8:30 pm #

    This was beautifully written. I have two cousins who are special needs. They are both in their 50s but have retained the innocence and sparkle of a child. There is nothing like the smile that spreads across their faces when they see a loved one…and that smile is infectious, as I’m sure is your daughter’s. Thanks for writing such a thoughtful post. I, too, have shared it on my FB page and am thrilled that it has gone viral. God bless you, your beautiful daughter and your entire family. :)

  44. melissa January 5, 2012 at 8:57 pm #

    As a special education teacher…I take offense to the word “retarded”. I seriously correct people when they use that word and make them choose a word that describes how they feel. Until people work with or have the privelege of knowing a person with a disability…they will never know the true children that make me smile everyday!

    • Kathy Dettwyler January 6, 2012 at 8:28 pm #

      As the mother of an adult young man with Down syndrome, I DON’T take offense at the word “retarded.” He son is mentally retarded. So what? If you call him “cognitively challenged” or “intellectually impaired” it doesn’t change a damn thing. And he certainly doesn’t care what you call him as long as it’s not late for dinner. It the *misuse* of the term “retarded” or “retard” to mean forgetful, inconsiderate, clumsy, etc. that is offensive. If one more person tells me that it’s not appropriate for me to describe my own son as “mentally retarded,” I’m going to pinch their head off.

      • Kathy Dettwyler January 6, 2012 at 8:29 pm #

        That would be “my son” not “he son.” Wasn’t paying attention and didn’t proofread.

  45. corrie January 5, 2012 at 8:58 pm #

    it was a great post! I just found it via one of my friends. I don’t use the word and hate the other word that people use – starts with s and with c because it’s just a mean word too!
    You have a gorgeous family and I just found your blog. I have 4 kids too but am expecting number 5 this year:)

    corrie:)

  46. maureentb January 5, 2012 at 9:49 pm #

    After reading what you posted on the “closed” FB page it prompted me to read your blog. This FUS alum is hooked and a big fan!

  47. Traci January 5, 2012 at 10:12 pm #

    I absolutely loved your blog post. I shared it on facebook and would love to share it on my blog if you don’t mind the link. You summed up my thoughts perfectly. The “r” word is not spoken in our house unless it is used for what it means. I was a special education teacher before becoming a SAHM and it is unacceptable to use that word around me. Our friends quickly learned. ;)

    • phoebz4 January 6, 2012 at 5:01 am #

      You can totally share it! Just two things – make sure there’s a link back to my blog, and don’t copy my daughter’s picture :)

  48. Lindsey January 5, 2012 at 10:15 pm #

    My daughter was just diagnosed with Williams Syndrome and we are still in the mourning phase. Your words are so meaningfulto me. Our Ruby sounds a lot like your daughter. They even have similar facial features which are incredibly beautiful might I add.

  49. Sonya January 5, 2012 at 10:15 pm #

    I saw your previous post via a friend on facebook, and I just wanted to say a huge thank you. My sister is MR with cognitive disabilities, because she has fragile-x syndrome. Though she’s 23, in many respects she’s mentally around 5-6. I have always hated the r-word used as slang, and generally speak up against it. A bit of awareness never hurt anyone. My family has been pretty active and vocal in the disabled community, so it’s nice to know we’re not fighting alone.

    I also wanted to recommend you to a program that might help your daughter. You mentioned in your previous post that she’d never be able to ride a bike. We thought so too, about my sister, until we found out about this program: http://www.losethetrainingwheels.org/ I don’t know how the do it, but they really do get kids to lose the training wheels on bikes. I hate to sound like I’m shilling out or selling something (genuinely I’m not); but it’s so hard to find really good programs that cater to people with special needs that I want to promote the ones that are super awesome. Good luck to you and your family!

    • phoebz4 January 6, 2012 at 4:33 am #

      Thanks for the link! I will definitely check that out. You’re right, it is hard to find good programs, thankfully, the special needs community is great on sharing info :)

  50. Sylvia January 5, 2012 at 10:19 pm #

    thrilled to have stumbled across your blog post and counted among the 90+ thousand times it has been read!

    I do not follow blogs, or should I say that I haven’t in the past, but look forward
    to reading more of your insights.

  51. tadd maffucci January 5, 2012 at 10:31 pm #

    I so appreciate your comments on the use of that word in society. I work with “disabled” adults for a career and have been railing against the misuse of this word for quite a while. I am planning to read your blog post to my church youth group which has discussed this topic in the past. Thank you for your honesty.

    • Lis January 6, 2012 at 10:03 pm #

      I just wanted to say, I love how you put quotes around “disabled”. I work with a young adult with special needs – a mental disability – she’s quite able. Often, I completely forget that she has a “disability”.

  52. Kevin Ayres January 5, 2012 at 10:34 pm #

    Phoebe
    I ma sure you get more comments than you can read, but I am a professor to trains teachers to work with individuals with disabilities and I am hoping to use what you have written here to help my students see that parents of children with disabilities are in fact real people with lots of stuff going on in their lives. Some of it involves a child with disabilities, some of it their other children, some of it nothing at all but they are real live people. Your blog captures this in an amazing (and obviously authentic way), thank you. One of my students linked to your blog off of FB for your, now viral post, and I immediately saw value to share with my other students. Thank you for your frank, open sharing of your experience.

    • phoebz4 January 6, 2012 at 6:03 am #

      I will be emailing you :)

  53. Shawna January 5, 2012 at 11:26 pm #

    I just want to tell you that I was moved by your blog about your beautiful daughter!! I am a targeted case manager for adults and children with disABILITIES!!!!! I love my job and even when I am having the crappiest day dealing with the politics of my job all I have to do it look at the pictures of the people that I help smiling back at me and I realize this is why i do what I do. you have a beautiful family and I love your blog

  54. lyn January 5, 2012 at 11:27 pm #

    Thank you so much for your posts – the original and your response to feedback. I did not read any negativity in your original post. I think people who commented about negativity exposed their own feelings, not yours!

    I teach middle school and I work with special needs students, and the R-word makes me crazy! It would be wonderful for your children to do a guest post about how they feel about the word, so that I could use it to help explain to my 7th graders why their word choice is so critical. I can say it until I’m blue in the face, but in the end, I am just one more adult telling them what to do.

  55. child with lissencephaly January 6, 2012 at 2:57 am #

    I just was able to find your wonderful blog, which like most others have found the word offensive. I appreciate the eloquent words that I have tried to say so many times, but cannot ever find the right ones at the right time. I have a child that I can truely say is ‘one of a kind’ he has such a rare brain ‘malformation’ that he is the only one in the world. Sadly, we do not have any research or data to follow to know anything about his condition. And like you said, in the very beginning you may grieve the child you were hoping for, because you never want your child to suffer in this very increasingly cruel world we live in, but once you can put those feelings aside, you can truely embrace the child God has blessed you with. My little guy has changed my life so profoundly and he is only 2 1/2 years old. And in those 2 1/2 years, he knows the meaning of life that so many try for years and sometimes never discover. I believe that children with ‘disabilities’ are the ‘normal’ ones. They are exactly what God wants for us all: to love unconditionally, to be niave in spirit, to never judge, the list goes on… I know what your post was about, it’s not a mother trying to say that she is the all-knowing because her daughter has a condition, it’s not trying to ban a word from anyone’s language, it is simply a plea from a mother that has a perfect child for others to see that same perfection. If we were all just like the special children of this world, we would never have wars to fight, we would never feel insecure, we would just be happy and loving and PERFECT! Thank you for your post and I hope it continues to go around the world, people should be more aware of this issue and be considerate of one another’s feelings.

  56. Dee January 6, 2012 at 3:02 am #

    WAy to go. I loved your post especially as I
    Could Absolutely relate to it as a mom of a daughter with an intellectual disability. Thank you for taking those ten minutes to put your, most articulate, words on your blog

  57. Janice January 6, 2012 at 7:37 am #

    My daughter is also mentally retarded, and I thoroughly enjoyed your post. I hate to hear people use that word. I’ve had to learn to deal with it over the last ten years of her life, but it still gets to me some times.

    You expressed yourself wonderully! I just found your blog, and all of it is great–not just the viral content! It’s always nice to hear from a parent who has a special-needs kid–kind of makes you realize you’re not alone in the world. I blog about my daughter some, too, but like you said, the blog is about my life. Great work, and I’m now following!

  58. Heidi Deane January 6, 2012 at 8:23 am #

    I am guilty of using that word. Usually along with a high degree of righteous indignation about something that is not well thought out, or doesn’t make any sense, I use it when something is stupid, or when it is clear that someone who can use their brain hasn’t. I believe your daughter’s precious face will stay in my head and I will try hard to catch myself. I am sorry and thank you for sharing in a way that made listening easy.

    • Sue2 January 6, 2012 at 4:55 pm #

      We, special needs parents, used that word loosely all the time before our lives included a special needs child. My son has autism and my daughter has bi-polar. I used to wonder why parents never discipline their children when they are acting out in stores and restaurants. Now that I have been in their shoes, I pray for them instead of complain about them. We quickly stopped using the word loosely because we have a constant reminder every minute of every day. I am sooo glad this issue went viral. Kudos to Phoebz4 for using her families life to teach others.

  59. Kate Lynch Dansereau January 6, 2012 at 8:29 am #

    One of my favorite quotes from Tim Shriver, chairman and CEO of Special Olympics:

    “I don’t want to be a cop I want to be a teacher. You’re allowed to be humiliating, degrading and hurtful. I’m allowed to petition you to at least recognize what you say and be aware of the option you have to stop.”
    – Tim Shriver

    Thank you for both articles, it’s something I have struggled with my whole life as I have a twin sister with Autism. Well done.

  60. bethany January 6, 2012 at 8:43 am #

    Thank you for your entry. I am sharing it with my high school students today.

  61. maryct70 January 6, 2012 at 8:44 am #

    I read both of your posts and I believe you really hit the nail on the head. Your daughter sounds like a wonderful little lady, full of spunk and a love of life.
    So glad I came across your blog!

  62. AJ January 6, 2012 at 9:25 am #

    I read your blog after my wife shared the link on Facebook and totally understand where you are coming from. I am employed by the Ohio State Board of Developmental Disabilities and I am proud to say that our ex-governor Strickland a couple of years back changed the name from Ohio State Board of Mental Retardation & Developmental Disabilities to just Developmental Disabilities. This was put into place from some great advocates through self-determination that have a developmental disability. I too correct people when they use the word retarded as saying ‘stupid’. Your blog post sent out 90,000 reminders. Great work.

  63. Laura January 6, 2012 at 9:33 am #

    Your awesome exactly for all the reasons you listed. You didn’t plan to make some big social statement, you’re just a mom of kids, one who happens to have special needs, doing your thing. You spoke the words many other parents have been unable to articulate, and as a result are helping to educate friends, family and complete strangers about being mindful of the words they choose to say. Kuddos, and thanks!

  64. Amy January 6, 2012 at 10:11 am #

    http://chicagoparent.com/magazines/chicago-parent/2011-november/features/r-word

    Love your blog. Here is an article from Chicago Parent magazine you might like.
    Also check out YouTube.com/watch?v=CoqaNGOOzqc
    That is Soeren Palumbo’s speech on the R word should be the new N word — going worldwide!

  65. Alli January 6, 2012 at 10:23 am #

    I am surprised that anyone could send you anything negative about your post. I guess there are always going to be negative people. I thought it was beautifully written. It has always bothered me when people use the word retarded instead of stupid, even though I have no personal connection to anyone with the diagnosis. The people I know that say it are genuine, good people too! I don’t think they’ve ever really thought about it. They would never hurt anyone intentionally so that’s why I am always surprised when they say it. It’s also one of the reasons I didn’t like the first Hangover movie (didn’t go see the 2nd one). I shared your post on my facebook page and hopefully now a few more people will change their wording & be more considerate. Best wishes to you and your beautiful family. :)

  66. Courtney Swift January 6, 2012 at 10:52 am #

    I just want to say thank you even if you didn’t expect to be the voice of so many…as a mom of 6 year old twins with autism that word makes me go into a panic. I just imagine my daughter being called that in a negative way. I never thought I would still be changing diapers on a 6 year old or wondering how I will take care of them when I am 60. I love being a mom and I love my kids. I also suffer from psoriasis and hate mayo.You are good read looking forward to reading more.(I have a blog also but don’t keep up with it.)

  67. spshltchr123 January 6, 2012 at 10:58 am #

    As a teacher of students with mild to moderate disabilities in 1st/2nd/3rd grades, I battle daily with the comments and views of others. Comments as to what my students ‘are’ or ‘act like’ based on stereotypes and assumptions irritate me and I oftentimes can not let the moment pass without clearing up some inaccuracies. Some of my students may not be able to learn at the same rate of their age-level peers, but that does not mean that they will never learn the content. Along with much of the core content that I teach, my students are being taught to be respectful of themselves and others, use good manners, use appropriate behavior, self-help skills, be self-advocates, and to believe in themselves and what they know. Some of my students may never live on their own, but that does not mean they will never graduate high school, go to college, hold a job, have relationships with others, and be productive, law-abiding citizens. Not every child is destined to become a brain surgeon or lawyer, whether they have special needs or not. Whether a child has a diagnosis or is considered ‘normal,’ they are still a child who needs to learn their place in and way through the crazy world around them. In my experience, my students with parents that have a grasp on their child’s individual reality, accept it, embrace it, and celebrate it are in a much better place, emotionally and behaviorally, then those parents that try to force their children into the mold of what others say their child should be based on their diagnosis. I applaud Phoebe for writing and posting the blogs that she has about being Maura’s mom. Celebrating her child and sharing the celebration with others is the ultimate way, in my personal and professional opinion, for many of the molds that others have created for children with special needs to be broken down and allowing them to forge their own destiny.

  68. Shana January 6, 2012 at 11:01 am #

    In your blog on the “r” word you expressed everything that a family members feel each time we hear that word. Thank you for this post. Sadly, my brother, a MR adult recently passed away. Without every saying a word, he taught us all the true meaning of compassion, patience, and unconditional love and in turn, we’ve passed those these traits to everyone we’ve met along the way. We will continue the crusade to end the use of the “r” word.

  69. Andrea Yenter January 6, 2012 at 11:12 am #

    Good morning! A friend shared your post with me and it struck me. I am a Camp Director at a camp that serves children and adults with disabilities and I’d like to share this with my summer staff – part of the training we do in June. A parent’s perspective is always good to learn from and this would fit into our training well. Thank you!

    • phoebz4 January 6, 2012 at 11:52 am #

      Yes, sharing is allowed as long as proper credit is given (see Creative Commons License at the bottom of the right column).

  70. Philippe Shils January 6, 2012 at 11:37 am #

    I’m the father of a six year old daughter with many of the same issues as your daughter’s. Lucia is non-verbal, has a right hemiplegia, and a diagnosis of pervasive developmental delay. She’s status post hemispherotomy secondary to refractory seizures and doing well in that regard. Thank you for both of these pieces. It isn’t being “pc” to object to the word “retarded” as a synonym for stupid. On a hopeful note…regularly I hear someone use the word inappropriately and then look my way, realize, and apologize. I don’t think it’s asking too much to expect some sensitivity from people. Not asking for hypersensitivity–just that people think a little bit. Please check out my blog…it’s poems mostly about my daughter. I think they would resonate with you. All the best.

  71. There January 6, 2012 at 11:39 am #

    My cousin’s wife literally just posted you viral post on her FB page…I clicked, I read, I adored. You have a gorgeous family, your writing is just as lovely. I absolutely adored visiting your little world…it brought smiles to my day. Especially the part about glitter, rainbows, and unicorns. I’m a sucker for unicorns. With that said, it’s no surprise to me that your post went platinum…you’re real, your kids are real, and you write what some of us don’t have the words for or the gift of…for this, I think you’re amazing. Thanks for sharing your corner of the internets with us! Cheers!

  72. kate garland January 6, 2012 at 11:54 am #

    hoo-ray for speaking out. hoo-ray for all those who speak out. I’m a widowed mother of a 23 yr old mentally & physically impaired child. At birth we were told he will never walk or talk. We had no explainations for his impairments, test after test, in the end it didn’t matter, he was my gift from God. To appreciate life, to love deeper and unconditionally, to learn from my son exactly how precious life is. Our miles stones are few and far between yet they reach as high as a mountain and as deep as the ocean. Today after continueing to never give up on him, he is happy, verbal, phyically active and loving life. My highest respect to any parent of a child with special needs…..as we are special parents !! God bless you and your child.

  73. Angie Valdez January 6, 2012 at 12:18 pm #

    Love, love, love it!! And I DO call a BAN on the word! Special Olympics has ran a campaign for the past 2-3 years to “ban the R-word”. Your blog was gracious, real and demonstrated your love for your daughter. I am a peds physical therapist and work primarily with children with more severe disabilities. I appreciate your honesty and commend you on being such a great advocate for your child!!!

  74. KyLee January 6, 2012 at 12:29 pm #

    Thank you for writing it. I am so grateful for your willingness to write it out. I heard so much of my own thoughts in there and it felt wonderful to hear that these are not just my feelings. Thats when I became a follower. I am the parent of an amazing 4 year old, PHOEBE, who has been diagnosised with SPD. She may not be what I had planned for, but she has been so much more. I am a smarter, better mom and person because of her. Please don’t hold back!

    • phoebz4 January 6, 2012 at 1:26 pm #

      Well, with such a cool name like Phoebe, your daughter’s bound to go far in life ;)

  75. Sandy Garrett January 6, 2012 at 1:00 pm #

    Wow. If I didn’t know better, I would think that I have somehow begun writing a blog in my sleep! My daughter also has MR, and I have no problem saying the “dreaded” words: mental retardation. It’s hers. It’s ours. We own it, and we accept it. LIke you daughter– my daughter rocks! While the word is ours to use, I agree with your post that retarded does not equate to stupid. It’s ironic that I read your post one day after having a heated “discussion” with a colleague who, while holding his dissertation for his doctorate in education, called himself retarded and continued to defend his right to be “non-politically correct”. I needed this blog today!

  76. Jolleen January 6, 2012 at 1:22 pm #

    You have said, what I have never been brave enough to say to strangers. When my friends, the people I work with, and others I know personally say the word ‘retarded’ I have no qualms about sharing my feelings of how it stings and hurts. In those cases, I feel like it’s important that they know how to be, at the very least, a better friend and an acquaintance to those who have mentrally retarded family members. Some have changed their choice of words because they see how dearly I love my sister, how I cherish her and don’t want to hurt my feelings. Others though, have changed their words because they see my sister for who she is, and knowing her has reshaped their idea of the word retarded and they no longer use it negatively. Your little Maura, in her beauty, joy, perseverance, and giggles, will help others reshape the word and the way they use it. Your courage, on her behalf, is helping so many others think twice when they wouldn’t have thought at all. Thank you very much.

  77. Denise January 6, 2012 at 1:42 pm #

    Thank you for putting a voice to most of our lives!! My feeling is that those of us who were blessed with the with the soul to succeed at it, ARE parents of special needs kids, and those who don’t have the fortitude to do it were blessed with ignorance!

  78. Lynn January 6, 2012 at 1:43 pm #

    Thank you for sharing this with the world. You have an wonderful talent! I just read the house rules you have posted, love them also! We have a lot of the same rules. We limit our time at petting zoos due to an inability to fully master rule one. Please keep writing!

  79. Katie Toth (@kat_toth) January 6, 2012 at 2:32 pm #

    I don’t think ‘retarded’ is acceptable, even as a medical diagnosis. It’s an archaic umbrella to drop all types of cognitive disability under like they’re the same, instead of actually describing symptoms/situations in a way that’s helpful to parents, friends, or care assistants.

    The only time I’m okay with hearing ‘retarded’ is from badass self-advocates who want to reclaim the word, like ‘queer’ or ‘fag.’ If you want to self-identify, or feel the label gives you power, props to that.

    But let’s all agree to hold our medical professionals to a higher standard than “um, your kid has a thing.”

    Aside from my disagreement on that issue, I appreciated and enjoyed the spirit of your post!

    • phoebz4 January 6, 2012 at 7:20 pm #

      Well, if it makes you feel better, I think they’re beginning to switch the MR diagnosis to cognitive disability. But until then, we have to deal with the MR diagnosis or one of the pseudonyms – cognitive disability, developmental disability, special needs. Which are all still umbrellas for children like mine who don’t fit into any other label.

      And yes, I’ve had a doctor tell me truthfully that we may never know what “thing” our daughter has, because medical science as a whole wasn’t really interested in cases like ours. They were more interested in studying the bigger, “sexier” things, like autism or the like. So until medical science takes an interest in our daughter and kids like her, we parents have to grasp at whatever straws we can get – because you have to have a specific diagnosis to qualify for certain things. Special education requires a label, even if it’s a generic umbrella one. The State of Michigan didn’t consider my daughter disabled in any way at the age of three because she didn’t have a “qualifying diagnosis” to be considered for their Children’s Special Health Care – despite her delays and low muscle tone. Etc, etc. Such is our life. And sorry, just ranted – lol!

      • pshils January 7, 2012 at 12:51 am #

        you do what you have to do to get services. we recognize that ‘autism’ is a catch-all, grab-bag diagnosis but the fact is, my daughter fits an autistic profile even as the etiology of her issues doesn’t neccessarily predict her as autistic. every single person is completely different–the medical field (and as a provider, i know) inclines towards pigeon-holing. only a bad thing when that predicates certain algorythms (sp?) in terms of treatment. the best docs recognize that the diagnosis is often more practical or useful than predictive, i think. and even as my daughter isn’t stereotypically autistic (whatever that means), the fact remains that certain therapies (aba, for example) traditionally reserved for autistic people, have proven very useful for her and getting that diagnosis was the best way to get her access. how are things in ireland re: special education?

  80. Ty's Adventures January 6, 2012 at 2:47 pm #

    Hi! I’m Ty! Nice to meetcha!

    I just re-blogged your “Being Retarded” post…loved it!

    http://wp.me/pR1J1-ij

  81. Krishna January 6, 2012 at 3:24 pm #

    Phoebe! Your blog, which I just found this morning while exploringt the social media news, was a blunt wake up call for me. Here I was in the office in my fatigued state after the holiday illness, just reading up and I saw the title that someone else had shared, Being Retarded. My eyes opened wide and I thought, “what is this that one of my friends has shared?” Then I read it. Wow, thank you. I also saw that the Spread the Word to End the Word campaign has also shared it. And as I have now also.

    I appreciate your straightforward, and well-worded thoughts and I wish you nothing but more joy in your life.

    You see, “joy” is a word that is uttered around our office often, but perhaps it should be said everyday. I not only know the word, I have lived it.

    I work for one of the Special Olympics chapters in Canada and I also am the brother of one of our athletes.

    My brother is 26 years old, has Down syndrome, has completed high school, has held down jobs, has Boys Night Outs, has a beer with his brother every now and then, has gotten married, and has won two silver medals at the 2011 Special Olympics World Summer Games in Athens. And he lives the word “joy” everyday.

    Thank you, and I hope to share the stage with you one day. ;) I do miss the boards.

  82. Gail Davis Armstrong January 6, 2012 at 3:30 pm #

    I just read your original post and then followed it to this post. I thought you wrote a beautiful post and it was written in a gentle, loving manner. It came across as it was intended. Your daughter is lovely and I only wish I was blessed to know her. God bless and keep you and your beautiful family.

  83. Carol January 6, 2012 at 3:52 pm #

    I grew up practically living in my grandparents’ house. My “retarded” uncle lived with them until his death. Not only was he greatly loved by all in our large extended family, but he was my bellweather. He was an excellent judge of character and knew when people were being cruel to him. My friends visited with me often and if Albert liked them, I knew they were “keepers.”

  84. pshils January 6, 2012 at 4:09 pm #

    also: if you haven’t already read it, “the boy in the moon” by ian brown (same name but not the stone roses singer!) is a fantastic and thoughtful book about a father and his disabled son and introduced me to the work of jean vanier, founder of l’arche.
    i lived in dublin from 1987-1992. i was a street trader on the o’connell bridge. i’m envious!! i’ll toast you and your family with a pint of stout this evening. slainte!

  85. camillajoy January 6, 2012 at 4:33 pm #

    Congratulations on going viral! It’s a great post and a message many people need to hear and many can related to. I can’t help wondering, though, if “retarded” will end up going the way of “idiot” and “moron,” which began as medical diagnoses and ended up as pejoratives with no medical connotations. Many people are resisting the use of “retarded” as a medical and legal term, while others are thoughtlessly adopting it for themselves, as you pointed out. To me, this points to bigger issues–the trouble we have accepting people who are different and our simplistic ideas of how intelligence and cognition work. Many people assume, as you pointed out, that individuals with complicated cognitive issues are just on one end of an imaginary “smart/stupid” continuum. Posts like yours go a long way to helping solve this problem, and I hope you don’t let the inevitable negative comments and confused readers discourage you!

  86. Rebecca January 6, 2012 at 5:50 pm #

    I feel like people often use the word “retarded” like the use the word “gay.” They don’t realize that by saying it in a derogatory manner they are degrading whole groups of people who are just like them, with thoughts and feelings. I also feel like some people might react the same way to someone telling them their child is gay as people have reacted to you saying your daughter is retarded. It’s not a bad thing. It’s not a loss to be mourned, and luckily for children with parents like you, it’s actually something that can be celebrated. Diversity is what makes the world an interesting place to live in. So choose another word, people, and don’t degrade the diversity that surrounds us.

    Great blog! I think it’s really important for people to think about this and often we forget to do so unless we have a little reminder.

  87. Anna January 6, 2012 at 6:22 pm #

    WHoo Hoo For you! I have a grand total of 34 followers….. oh well…. I LOVE blogging. I have found a community of people that enjoy art, a community of knitters, how about families adopting, and the best one….. families with a loved one with Down Syndrome. We just joined the club a little over a year ago and our daughter Grace has taught us so much about grace. She amazes me and I feel so lucky to be a mommy again!! I am ashamed to admit that I used to use the R word as well. I never meant it maliciously. But when I realized how hurtful I cut it out of my vocabulary. Stupid works just as well……

  88. Cathryn McGuire January 6, 2012 at 6:45 pm #

    I heard that retard or even retarded means to hinder or hold back or even set back and we all kno how lives can be set back from certain situations in ones life . :)

  89. melissa January 6, 2012 at 8:52 pm #

    I am a special education teacher…and I take offense to this word. I correct everyone that uses that word. Until you get to know the amazing person behind the disability, you never will understand how much our children have to offer. My students bring a smile to my face everyday and I can only hope to have the determination they have someday! Thank you for your post.

  90. Sara January 6, 2012 at 9:06 pm #

    My uncle has Fragile X (a spectrum disorder which includes fairly significant developmental delay in his case) and is 71 years old. His parents are no longer alive, and I take care of him.
    One day I was hanging out with my 2 year old nephew, talking to him and watching him play. I had a thought: I want to come back in my next life as a perpetual two-year-old. Then it hit me! That is exactly what my uncle has. Always excited about snow, summer camp, and vacations Forever believing in Santa, the Easter Bunny, and the magic in things. He is the best part of my life and has taught me so much.

  91. Anne January 6, 2012 at 9:25 pm #

    I really appreciated your bravery in your original post. Most people aren’t willing to put themselves out there like that and speak up in defense of others! I am a school social worker working with a variety of students with a variety of abilities and intellectual capacities. Many of them have a diagnosis of Mental Retardation (or Intellectual Disability as we have just switched to in our district), but not a one of them is “retarded.” I think most of the negative commentators on your previous post are people who are not the family or support system of a person with a cognitive impairment, therefore it is beyond their realm of thought just how hurtful the word “retard/retarded” or “gay” can truly be! Some of the best things I’ve learned in my adult life have come from the children I might have least expected it to come from. I’m so blessed to have them in my life and they are the reason I am a better person!

    Some others brought it up and I also wanted to say, not specifically to you, but just to the blog-o-sphere in general and others who may read these posts and be inclined to use hurtful words:

    Terms like “retard,” “idiot,” “moron,” “stupid,” among others, were all once the proper clinical/medical term used to diagnose or describe a person with a cognitive impairment. Terms were changed over time because they came to be used in derogatory ways and hurled as insults. They were no longer fitting to describe the diagnosis. Whether the word is idiot, stupid, dumb, retard, etc we should all be a little more conscious of how we describe another’s actions or words. If someone has been forgetful, they are not “retarded” or even “dumb” they are just forgetful. As a society we not to stop using all insulting words to describe our own or others missteps and mistakes and use the real terms that describe the real behavior.

    I am forgetful, at times I have been (regrettably) thoughtless and insensitive. I have lost things. I have felt inadequate in answering a question or when speaking to others. I have been confused. I have been goofy and silly. I have not been “retarded,” “dumb,” “an idiot,” or “gay.”

    You sound like an amazing mother and all of your children are so blessed to have you!

  92. Anne January 6, 2012 at 9:29 pm #

    *As a society, we NEED to stop using…

    (grammar policing myself there, yikes can a typo really change what ya mean sometimes!)

  93. Mindy January 6, 2012 at 9:46 pm #

    Thank you for your amazing insight and the lovely tribute to your daughter. I discovered this website recently and made the pledge. I apologize if this link is already here in the many comments. http://www.r-word.org/

  94. Doug January 6, 2012 at 9:57 pm #

    Great job on the first post. And this one as well.

  95. csmcgraw January 6, 2012 at 10:16 pm #

    I felt like you were writing exactly what I have thought many times! I am a mom of three teenagers. My eighteen year-old daughter is my oldest child and is also on the autism spectrum (pervasive developmental disorder – not otherwise specified or PDD-NOS). My daughter spreads love and happiness wherever she goes too and I feel so blessed that she is my daughter because I have learned how to be a better person from being around her. I am so glad that one of her previous teachers shared this blog and that I actually read it! I’m sure it is overwhelming but I think you touched a tender place in many hearts so thank you very much for sharing your thoughts and your family with the rest of us! I too am hoping to start writing – I just really need to set aside the time and be disciplined about it. Best of luck to you with your writing and I’m really jealous that you live in Ireland. I’ve always wanted to visit there! :)

  96. Arlene Aninion January 6, 2012 at 10:20 pm #

    Hi, Phoebe. To this very day, I am still shocked that so many people use the “r” word as if it were part of every day vocabulary. I can “almost” understand it when a youth says the word because everyone else is using it, but when an older person uses it, I am so very shocked and angered. I am 51 years-old. My “special” brother is 53. I used to get upset when we were kids and other kids used to call him names, throw rocks at him, and were just down right hateful to him. I was his defender in many cases. I used to run after those kids and teach them a thing or two. That was 30-40 years ago. And for people to use this word in every day sentences just kills me. The one thing I remind my brother of daily is that God created him and God doesn’t make mistakes. God has a plan and purpose for everyone. We have no control over what people say or do, we only have control over ourselves. We must set a good example for others to follow. When people say something is retarded, respond by immediately replacing retarded with stupid. I have a co-worker who is almost my age and she uses this word daily. Every time she says the word, I just walk away. When a youth says the word, I immediately reply “do you know what retarded is?” If they don’t, I explain it. If they do, I ask them why they are using it in that sentence. They will either correct themselves immediately or walk away. If they reply negatively, I then walk away.

    God bless you for writing on this subject. I do hope and pray that one day this word will be removed from our society’s every day vocabulary.

  97. Kelly January 6, 2012 at 10:30 pm #

    Thanks for your post. My son’s former speech therapist posted it on her FB page and I read it and loved it. My son has a neurological disorder called Tuberous Sclerosis and Autism. He was also diagnosed as MR. He has no speech and maybe cognitively about 2 and a half though he is almost 7. I have been there when someone makes fun of my son when he is making some of his noises. It makes me livid and I have to think before I act.

  98. Rebecca Boucher January 6, 2012 at 10:57 pm #

    Hi – just found your blog through a FB link to the post about “that word”. I was struck by our similaries. First – I also DETEST mayo. I’ve got 4 kids, 2 and 2. But my daughter with special needs – Down syndrome specifically – is my oldest. She is 11, going on 21. And we just moved across country from NJ to Salt Lake City, UT. Which might as well be another country (or even planet for that matter). So anyway, keep writing. And good luck with “The Book”.

  99. Joy January 6, 2012 at 11:24 pm #

    In your original post you said your daughter could never live on her own. I thought you may enjoy learning about a course of study at UNCG where students with intellectual disabilities are living on their own and going to college.

    http://www.beyondacademics.org/

  100. Kaddi k January 7, 2012 at 7:36 am #

    I just want to say you seem like an amazing momma! And while you are lucky and blessed to have her in your life, she is blessed to have you as well! The very best to you and your family… Thanks for your thoughts…

  101. Crystal January 7, 2012 at 8:29 am #

    Before Christmas, my 3-year-old daughter overheard the word “stupid” and started using it a lot. I did not realize just how often I use that word until then (because every time she corrected me, she got to eat my advent chocolate – and that happened a lot too!). It sounds horrible coming out of her mouth, far more horrible than (I think) it sounds coming out of mine. Your post about the use of the word “retarded” has reminded me, yet again, to beware what comes out of me so I can train my daughter to think conscientiously about the words she uses. Thank you for your honesty and this food for thought.

  102. Lynette January 7, 2012 at 11:29 am #

    Your original post and this one are amazing. I work for an agency that serves people with developmental disabilities and I have a soon-to-be 5 year old niece who is developmentally disabled. Your post brought me to tears! You said it perfectly! I often think that people who are developmentally disabled (or mentally retarded) are some of the most amazing people anyone will meet, and yet many won’t even get to know them enough to realize it. Many of these individuals have no desire to or no idea that they should “fit in” with society, which is something that I often envy. They are amazing, brilliant people. The use of the word “retarded” in typical society does not at all correlate to the truth behind the diagnosis of mental retardation. Thank you for your post.

  103. BBs January 7, 2012 at 11:54 am #

    Bless you. Bless you for the courage to blog about this important fact of your life. Bless you for spreading a message of unconditional love and acceptance. and, Thank you also for the above facts. Keep up the good work of being you.

  104. Michelle January 7, 2012 at 11:58 am #

    Fantastic post. I love how you simply boil it down to retarded does not equal stupid. It’s just that easy. Beautiful writing.

  105. Stacey January 7, 2012 at 12:01 pm #

    I see going viral as a good thing here. It is so incredibly important for families who are living your experience to be honest. That is a word that I would’ve had my mouth washed out with soap for saying with a negative connotation as a child. I am a grad student getting my MAT in Special Education. That blog post is important information for everyone. I really appreciated the message you wrote. Thank you.

  106. Karen January 7, 2012 at 2:40 pm #

    Thank you for your post on the word retarded. I have a mentally retarded son and have been told by people,” some in my own family” that I took it wrong. When I objected to the use of that word I needed to understand. I do understand that the use of that word is very hurtful and if other people have the right to use it, I also have the right ot object and will do so. Thanks again for writing your post and for letting me vent a little.

  107. Moira January 7, 2012 at 2:44 pm #

    I just read that post you are talking about, and wanted to thank you. While adults are likely to use the word self-deprecatingly, it used wholesale in the schoolyard. At one point my son, who has enough cognitive ability and is old enough to understand both the word and his limitations, started using the word so he could fit in.

    I still wince when I hear the word, almost NEVER do I hear retarded used in its appropriate context. I have always defined smart as using the knowledge available to make a decision, and stupid as making a decision despite the available knowledge.

    Like you, I continue to be blown away by my son who is now 16. He is one of the most insightful and observant people in my life. He can’t do division, but he makes most people who meet him laugh ot loud- with him, not at him. We need ALL the different kinds of people in this world, they all play a different role. I can’t imagine what Phd holder could do a better job teaching me to laugh at myself, to be aware, to have patience. Again, thanks for the post, it was well said!

  108. Carmen January 7, 2012 at 9:28 pm #

    I love your posts! I have always been upset by the use of that word. Growing up I constantly had people making fun of my aunt which has down syndrome. Now as a mother both my older children have ADHD and both need special IEP’s for school. My oldest has learned to say what ever when they make fun of him and is growing in to a loving young man. Now active in JROTC and Choir. My second child struggles a lot more and takes it very hard when they call him retarded. He comes home upset and in tears. This year he is in band playing the flute and it is the only class he looks forward to. There he only squeaks on a wrong note just like any other child in the class. There he is happy. I wish more people were aware of how the use of that word hurts. Thank you from one mother to another.

  109. Stacie January 7, 2012 at 10:38 pm #

    I have two children with Down Syndrome. They are the smartest, lovingest, most genuine people I know.

  110. Emily January 7, 2012 at 11:15 pm #

    I always have a difficult time explaining to people WHY using the word “retarded” is offensive, but you put it perfectly. Thank you for writing this.

  111. Anna Riley January 7, 2012 at 11:30 pm #

    Hello from Illinois! My older son, my lil peanut, was a NICU baby born 1 lb 6 oz and is my little super man. He is special needs both cognitively and medically but hands down he has the strongest spirit and will to survive more than any person I know. Thank you for your post and your follow up post. <3

  112. Shaunda Eppes January 8, 2012 at 12:54 am #

    Thank you so much for putting into words what we feel about our son. God bless!!!

  113. victoria988 January 8, 2012 at 1:38 am #

    Your post went viral as it deserved to. It was a good true message you were trying to get across and it seemed effective. I go through the same type of situations with people because of a family member of mine. It sucks dealing with people, but you clearly do it better than I ever could so for that I congratulate you.

  114. Karen M. Rozier January 8, 2012 at 8:11 am #

    You did an excellent job with your initial post and your follow-up post is as impressive. Thanks for sharing your talent with us.

  115. Denise January 8, 2012 at 11:24 am #

    I am a service coordinator and work with kids from birth to five years who are diagnosed with a developmental disability. You, your daughter and your family are the reason I love my job. I have been doing this for 16 years and it is the children and families that I love so much. Thank you for sharing your story with so many people! The kids I work with are anything but “stupid”.

  116. Polly Anderson January 9, 2012 at 11:34 am #

    Just saw your post on FB by someone who shared it. The word “retarded” was used as a medical dx but the use of it today is usually a slang term with a negative connatation. I don’t believe people mean to be hurtful everytime they use it -they do not realize the impact words can have. Words are very powerful. We need to learn to be more thoughtful about the words we use. “Retarded” implies “lesser than”, “stupid” and “defective”. It forms opinions about people who have developmental and cognitive disabilities. I believe it contributes to the problems people with disabilities have receiving appropriate and challenging education, healthcare and other services. By looking at someone as “lesser”, perceptions are made regarding what they can do and not do. Again, Words are VERY powerful and they shape societies viewpoints and policies. Every person has the right to be respected as they are and each person has a valuable way they can contribute to the family and community they are a part of. My daughter had Cerebral Palsy, Epilepsy, and was nonverbal. However, she spoke volumes to people through her smile, eyes, and sweet spirit. Many people became aware of the fact that people with disabities are the same as anyone else and should be valued for who they are rather than their medical dx by knowing Katy. She lived a full and joyful life for 17 years and was certainly her best advocate. Our misconceptions are what “retard” our ability to look beyond the surface and see and love the whole person. I know your child is a blessing to your family. My other children are adults now and all work in special education and mental health fields with children. I am thankful each day that God blessed me with Katy and opened my eyes to the value of each person.

    • Krishna January 9, 2012 at 6:05 pm #

      Thank you, Polly. Your message is so insightful.

  117. Laura Hamilton January 9, 2012 at 12:47 pm #

    Cripes. I don’t understand the people who just aren’t willing to let go of a word. A friend of mine has a daughter with developmental delays. Her daughter asked all of her friends and family to take the “r” word out of their vocabulary. That simple request was good enough for me so I stopped using that word. Since then I have found out more about the campaign to get rid of the “r” word. Even the organization formerly known as The Association for Retarded Citizens has changed it’s name to simply The Arc and taken the word out of their literature. They have a great explanation over on their web site. If one mom simply asking you not to use the word isn’t enough for you, then go there. Or go over to Special Olympics which supports the campaign to end use of the word. PEOPLE! It’s about sympathy, understanding and human kindness. But if you can’t scrape any of that together, if you are so hell bent on standing up for your rights to be “anti-pc,” then go ahead and use the “r” word and watch the rest of us turn away from you. And finally, language is changeable. Language evolves. It evolves of it’s own accord and it evolves to reflect the changing values of society. The word “retarded” is being left behind as the lexicon evolves. Suck it up and move on with the rest of us.

  118. Dana January 9, 2012 at 11:13 pm #

    I haven’t read through all the comments, but I’m sure I’m not alone here in saying bravo to you, both for putting it out there, and for your amazing attitude and for celebrating the things that make your daughter one in a million. I have a son who has an unexplained developmental delay. He is high functioning but he is very different from his peers. And yet, the amount of joy he generates in a day is amazing. I struggle every day with frustration and yet I know I do deeply appreciate the person he is. Anyway, thank you for putting this out there. I know the days of mean kids calling my son “Retard!” are coming and he won’t know it’s a bad thing.

  119. nateisgreat January 10, 2012 at 6:59 am #

    Just say your viral post – holla for you writing it! My sweet boy is autistic and we have the same feelings about the word (we wrote about it last year at http://nateisgreat.wordpress.com/2011/04/07/rated-r/). I, too, am stunned when people use the word so casually AND defend their use of it. If you haven’t discovered it already, there’s an awesome organization called Life My Way in Illinois. They’ve created The Social Challenge, a website that tracks how often the R word is used on Twitter. Then it provides you with an anonymous way to tweet back (through Life My Way) to ask the tweeter to reconsider their vocabulary. Since 12AM (it’s now 6AM in Illinois), the word has been tweeted 656 times. This week (it’s Tuesday!), it has been tweeted 6,359. It’s a word that has to get out of the lexicon. Words have meaning and power and it is lazy to fall back on a word that doesn’t fully express how you feel. More power to you, Mama!

  120. Ashley ActionForce January 10, 2012 at 9:02 am #

    I think your words took off because they are powerful. I think you said something meaningful in a way that touched a lot of people. Before reading anything other than that post alone I posted it on the pages of a few friends of mine that I thought it would speak to. I am in the majority of people who appreciates your words :-) You seem to have a really beautiful family and I wish you all abundant happiness. I have special needs children myself (my children have extensive physical disabilities and cognitive delays). Each child/person is unique with their own struggles and treasures, just because our children’s struggles don’t fall within the spectrum of “average” that does not mean they are of any less quality. Personally I believe my family has become stronger and more powerful and world-changing for the hurdles we have had to overcome. I think it’s obvious that yours has too. I think you put it well. Kudos and have a fabulous day! :-)

  121. Mary January 10, 2012 at 3:02 pm #

    Thank You!!!! I have spent my years trying to help people understand the real meaning of “retarded”.

    My 50 year old brother (he’s the oldest of 3 -I mention that because you’d be amazed at how many people are shocked that my parents continued to have children after knowing his condition!) is diagnosed as “mentally retarded”. He was born this way and we’ve never known him any other way so therefore, NEVER associated the word – “retarded” with something negative. He is by far the most amazing person I know! My life – and those of my friends and family – have been simply enriched by his presence. He has taught my family, friends and even strangers, lessons that we could never learn from a book. He is kind, patient, happy, willing, accepting, excited, hard working, determined and compassionate. He has been a loyal and hard working employee for 34 years, has been awarded employee of the month, honored by the Lions Club, is a volunteer with Meals on Wheels, Community Shelter and many more non-profit organizations. He is probably one of the most recognizable figures in our community – everywhere we go someone knows him.

    When I tell folks my brother is “mentally retarded” I can see the gasp as though I’ve said something awful. I take that moment to educate those who think “retarded” is a bad word – I explain that it is NOT a negative word – it simply means his journey through life is slower than most….that his progress in life is delayed – which doesn’t mean it’s stopped or ended. Peter has NEVER stopped learning and growing…he has never hit limits….He embraces life with passion and joy…the life he has lived in these 50 years has defined what “retardation” is for me and I tell you – it is NOT a negative adjective. I would never use the word “retarded” to define a stupid act because I don’t have that association. The problem is, there are very few reasons to use this word, yet when used appropriately, people are still aghast. I refuse to cave to the “politically correct” crowd and change his diagnosis to “challenged or impaired”…those all mean different things – and he has never been re-diagnosed! His “official” diagnosis is “mentally retarded”….which if I ever was changed should be “mentally superior”!!!!

    • Ty's Adventures January 10, 2012 at 8:19 pm #

      Hi, Mary! I’m Ty!
      Thank you posting your comment…it’s sad not enough has changed to keep the same type of comments and looks from happening to my family. My 2 little brothers and I don’t notice them, but my Mom & Dad sure do. I’m the biggest brother in my family…I get to boss my 2 little bros around. Oh yeah, & I have Down syndrome. Big whoop. I wish more had changed with the way people think from then to now. Bummer.
      Oh well! Sticks & stones, right!?
      Tell your big bro I say HI!

  122. Gail Jones January 10, 2012 at 9:46 pm #

    That post was amazing….it was like you were reading my mind! I too have a special needs daughter and I hate when that word is not used correctly. My daughter is 17 and she has all (and I mean all) the things your daughter has and it wasnt until this last July someone was able to tell me why. 22Q13 Deletion Syndrome or Phelan-McDermid Syndrome. Its a rare genetic disorder. Check it out….you just never know. Thanks again for your post!!

    • phoebz4 January 11, 2012 at 5:30 am #

      I am actually familiar wtih Phelan-McDermid Syndrome – it seemed that it could be what my daughter has, but it’s been ruled out. Thanks for mentioning it though, maybe it’ll help someone else :)

  123. Amanda January 11, 2012 at 5:31 pm #

    I came across your blog, Being Retarded, when the director from my internship in Cincy shared it on Facebook. I was impressed. I shared it again, and my friends shared it after me. Your blog led me to another blog about living with a child with special needs. I just graduated from college with a BS in Developmental Disabilities and no idea of what I want to do in my life except for one thing- help people with disabilities and their families. Reading your blog and the ones after have been an insight into the lives of the people I want to help. I like your blog because it’s simply about your life and your children. Please keep writing- and don’t worry about what others have to say.

  124. Mandy January 12, 2012 at 2:19 am #

    Your daughter is beautiful and a precious gift. I would be lying if I said I never spoke thoughtlessly, but I will think before speaking now. Wise little Maura and her mommy taught me a valuable lesson, and for that I am grateful. Thank you! :)

  125. Jessica DesLongchamp January 13, 2012 at 4:14 am #

    Thank you, blessings on you and your beautiful family.

  126. eisnikki January 13, 2012 at 9:39 am #

    I actually just read the original post which I was going to comment on but I decided to follow the link to the “background information.” The background information doesn’t change my original thought, which was how well put the original post was, but only increases it. I love that you succeeded in not taking all of the advice and criticisms personally (which I personally have found darn near impossible not to do). It gives me hope that in a few years I will have developed the grace and comfort with the situation that you have exhibited. I have a son who was recently diagnosed with Fragile X (a syndrome that shares many of the characteristics you mentioned for Maura) and we are still in our grieving phase. I’m sure you’ve had her tested for it, but if not, I would definitely see a geneticist as it may provide your answer.

    • phoebz4 January 13, 2012 at 10:17 am #

      Good luck to you! Yes, we tested for Fragile X what seems like a long time ago now. And yes, I have grown a thicker skin. I figure that most people giving advice are doing it to truly be helpful. Those who criticize – well – judging a person by one blog post is a bit silly. I’ve always been under the belief that you shouldn’t judge a person until you know their story.

      It does get easier with time. There’s a period of mourning, and then a period of adjustment. And usually, when things start going smoothly, another wrench is thrown into the works, to keep you on your toes – or maybe that’s just our luck, lol!

  127. Lynette January 13, 2012 at 11:23 pm #

    Have you tested for Rett Syndrome? Many of the symptoms you listed are symptoms of Rett (of course, they are also common in many diagnoses). Many Rett girls are often misdiagnosed with things such as autism, PDD or cerebral palsy. Check it out. My niece is less severe than most cases and has not lost her ability to ambulate she also has the strabismus.

    • phoebz4 January 14, 2012 at 6:54 am #

      Yep – even impressed the geneticist when he started asking leading questions and I said “I know where you’re going with this, you’re thinking Rett’s Syndrome.” He did smile and said yes, and then (cause he was awesome) asked me what I thought. I said “Probably not.” Because she’s never had any regression. We went ahead and checked for both Rett’s and Atypical Rett’s (though he said that if she had the latter, it would be the most atypical version possible.) Both tests came back normal, which is the norm for her.

  128. Lynette January 14, 2012 at 12:42 pm #

    Interesting…my niece has atypical Rett. Not sure if it’s harder to have a seemingly devastating diagnosis or no diagnosis at all. Sometimes having a specific label can be good in order to obtain needed services, but not having a specific label could allow for people around her to think outside the box when interacting or working on skills with her. I’ve worked in the field for 9 years, it was supposed to be a stepping stone to some other type of career (I’m still not sure what that is…hahaha) but I now think I fell head first into working with this population for a reason and that reason is my beautiful niece! Best wishes to you and Maura and the rest of your family! Keep doing what you’re doing! :)

    • phoebz4 January 14, 2012 at 1:44 pm #

      Well, the geneticist did say that in a way, not having a diagnosis at this point was a good thing, b/c if it was really scary/life-threatening, we’d have figured it out by now. But it would be nice to have a name for it. I’ve jokingly called it Maura Syndrome in the past, but now I’m thinking we should go with Sherlock Syndrome (a play on our last name and “it’s a mystery!” – lol!)

  129. Linda February 6, 2012 at 4:30 pm #

    Thanks, Phoebe. My son, David, has autism and mild MR. It is like nails on a chalkboard to hear that word bandied about and I call people on it, but you did it much more eloquently than I ever could have. Your Maura is beautiful!!

  130. Shanna Lewis February 9, 2012 at 10:07 pm #

    Thank you for saying what I’ve wanted to say for 14years. I have two daughters whom both are disabled and we hear our own family members.use the “r” word all the time. It is a tough world.

Trackbacks/Pingbacks

  1. spread the word | life alphabetical - March 6, 2013

    [...] has a follow-up post, which she wrote after the post mentioned above went viral. It can be found here. She also created a page dedicated to providing some background and history on her daughter, Maura, [...]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 6,732 other followers

%d bloggers like this: