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Every Moment Counts: A Book Giveaway

8 Oct

We are Luddites here at Modern Messy, at least according to our kids. We don’t have any iPads for them to play with and they are very rarely allowed to play with our phones. Nevertheless, they still have managed to learn how to navigate a computer and they do quite well on our laptops and PCs.

And even though we try to limit their screen time on these devices and on TVs too, the lure of putting them into “electronic zombie mode” as I like to call it, is often too hard to resist. It’s the only way to keep them quiet! But resist we must, and into this terrifying void comes a book that is perfect for our time.

Just released today, it is called “The Teachable Minute: The Secret to Raising Smart & Appreciative Kids,” by Dr. Connie Hebert. Its premise is simple: throughout our daily routines and outings with our kids, there are hundreds of little moments we can grasp in order to share knowledge, teach a lesson or just have fun. She said we need to minimize our use of devices when kids are around and use the time to show, ask and teach. Technology is not the most important thing, she says, THEY are. She recounts a sad story about a little boy at lunch with his mom.  He was trying to show her what he was drawing and engage her in conversation. The entire time, she never looked up from her phone — not once. This makes my heart hurt, especially for all the times I probably tuned my kids out in favor of the computer. I think we all can use some help in this area.

The book is a quick read and even if you just pick the parts you like and try to do one or two things she recommends, you will feel like a better, calmer parent. (Keep reading for how you can win a copy in my Book Giveaway!)

The book is divided into sections based on the places people typically go with kids — the gas station, the grocery store, the post office, a baseball game, the dentist’s office, the zoo, the rest room (a great place for teaching kids the words “men” and “women” or “family”)  — or the parts of your house that are meaningful to them — the kitchen, the yard, the the dinner table, the bathtub. She has these really fun and simple ideas for relating an idea to the activity in question and her suggestions are labeled for both little kids and older kids. For instance, in the bathroom you can teach the littles the concepts of Hot and Cold and think of other words that start with the same letters. And you can teach them how to scrub the tub, she says! Awesome, sign me up. For older kids, she suggests getting them thinking about how the water reaches the bathroom faucet or what they would do if the toilet overflowed or the sink clogged. (I guess “Run and get your father” is not the answer she was going for?)

More poignantly, she also has suggestions for teaching them about what happens at a hospital in case they ever have to go there (our twins did) and what to say at a funeral to those grieving a loved one (we’ve been in that situation too). The ideas are very straightforward and would be helpful to any kid in that situation. The key is just making the foreign accessible and practicing what to say or do.

I personally learned some very practical information, such as in the section on taking your kids to visit a college campus. What an interesting idea for a day out, by the way. And it’s free! She gave a tip for teaching older kids to stay safe in parking lots or dark streets, especially if they feel someone is following them. Start walking fast in the direction of your car or dormitory and call out “Hey, I’m coming! How are you?” This will make the follower think there are people around. Now that’s news you can use. I hadn’t thought of that before, but that’s a good tip for anyone.

Dr. Hebert is someone I met in my online travels and interviewed for a great post about encouraging a love of reading in your kids. After that, she kindly sent me her book and asked me to write a little blurb for the cover, which I enjoyed doing.  I think my readers would enjoy the book too, so I have a little treat for you. Anyone who responds to this question with a comment below will be entered into a drawing for a copy of the book. I’ll keep the contest open until Thursday night and announce the winner on Friday morning.

Here’s the question: what is your best tip for turning a boring or stressful part of your day with the kids into a fun moment?

No judgments here. If your answer is “Stuff ’em full of jelly doughnuts,” or, “Throw a smartphone in every grubby hand,” so be it! My two favorite things to do are turn on some singalong music (and that could be anything from Mother Goose to the Beach Boys to the Ramones) and talk in silly voices. I have this super goofy persona named Franz that I bring out when the kids aren’t listening to me. My oldest is tiring of this, so for her I often will try to think of some absurdity that begins with “Imagine if…” She’s very good at it too. She likes to imagine what it would be like if we had 100 copies of our twins. Or what it would be like if birds were wearing hats made out of newspaper and betting on horse races. (Actually, it is me who wonders that, but who’s keeping track?)

OK, so ready, set, go……

A Picture of Down Syndrome, in So Many Words

12 May

And here I present to you the first ever “Messy” awards. These awards are neither exclusive nor comprehensive, so please, take no offense if your writing is not listed here. In fact, feel free to drop me a note about your own or someone else’s writing that you think should be included. Who the heck am I to be presumptuous enough to bestow awards? I’m nobody, of course (so don’t go puttin’ this award on your resume just yet). Nobody but somebody who likes to read, write and share what I learn in my travels. And I’ve read many more great posts and articles than I could ever have the time to list here. So I picked mostly things that turned personal experience into something universal, or writing that challenged conventional wisdom or tackled a complicated topic. I hope to make this a permanent page, as soon as I figure out how to do that ☺

Despite the title, the awards have nothing to do with being a mess, or otherwise crazy like yours truly. This is simply a directory of some of my favorite writing about disability, usually Down syndrome in particular. Listed here, in no particular order, is writing that sang, that resonated long after I read it. Though I have shared many of these on my Thoroughly Modern Messy fan page on Facebook over time, I want to make sure that everyone knows about these wonderful, insightful writers who have made my days more interesting and my life richer. Please pick a few that appeal to you and start reading. Don’t forget to spend some time on these writers’ blogs too. You won’t be disappointed!

BEST HISTORICAL OVERVIEW OF DOWN SYNDROME:

Jen Logan of DownWitDat. Hers was one of the first blogs I found after my son was born in 2008 – she has twins, like I do, where the boy has Down syndrome. It is still among my top favorites for her informative and utterly clear writing style, and she tackles the hard issues with grace and chutzpah. My favorite among her “History” series is this post about famous figures that had a relative with Ds.
http://downwitdat.blogspot.ca/2012/05/brief-history-of-down-syndrome-part-3.html

MOST THOROUGH EXPLANATION OF A CONTROVERSIAL ISSUE:

Matthew Hennessey at First Things. A hard-hitting look at how the issue of abortion is presented (or not presented) in competing information booklets given to new parents by various Down syndrome organizations.
http://www.firstthings.com/onthesquare/2012/11/the-down-syndrome-communityrsquos-abortion-rift

BEST PERSONAL ESSAY MASQUERADING AS A BOOK REVIEW:

Cristina Nehring at Slate. I did not read Andrew Solomon’s book about families with exceptional (a.k.a. “different”) children, “Far From the Tree: Parents, Children, and the Search for Identity.” But Ms. Nehring did, and wrote a comprehensive and searing review. I cannot say whether I agree or disagree with the review; what has stayed with me is her beautiful writing, a meditation on a life she did not expect yet has poetically embraced, raising with a daughter with Down syndrome who had a medically complicated first year of life.

http://www.slate.com/articles/double_x/doublex/2012/11/andrew_solomon_s_far_from_the_tree_parents_children_and_the_search_for_identity.html

BEST EXPLOSIONS OF MYTHS ABOUT DOWN SYNDROME:
Deanna Smith of Everything and Nothing From Essex. Sometimes you feel like you can’t win when you start reading what people have to say about having a kid with Trisomy 21. Some say life with Ds is a burden. Others insist our kids are precious angels sent directly from heaven to bless us all. Ms. Smith writes for the rest of us, who are content with a happy medium.
http://www.deannajsmith.com/2013/01/down-syndrome-promise-of-happiness-or.html

Anna Theurer of The Chronicles of Ellie Bellie Bear has an interesting perspective on Down syndrome — her little girl has Ds, and so does her Aunt Peggy, who was born over 50 years ago. Much has changed in that time, but some fallacies are eternal. The first (hilarious) photograph of Ms. Theurer’s daughter says it all!!
http://ellietheurer.blogspot.com/2012/07/blog-hop-down-syndrome-stereotypes.html

BEST WRITING ABOUT THE ETHAN SAYLOR CASE:
A young man in Maryland with Down syndrome ended up dead early this year after he refused to leave a movie theater after a showing and some off-duty police officers working as mall security intervened. No charges were filed in the case, and parents all over the country are outraged. Much has been written, thank goodness, and hopefully further investigations are on the horizon. I have read many heartfelt posts, and all of them are valuable. Here are a few that I found especially comprehensive or graceful, including some articles in the media:

Louise Kinross of Bloom, Parenting Kids with Disabilities:
http://bloom-parentingkidswithdisabilities.blogspot.com/2013/04/stigma-and-ethan-saylor.html
Lawrence Downes of The New York Times:
http://www.nytimes.com/2013/03/19/opinion/ethan-saylors-death-and-a-cry-for-down-syndrome-understanding.html?_r=0
Little Bird’s Dad (an anonymous blog):
http://littlebirdsdad.com/category/justice-for-ethan-saylor/
Meriah Nichols of With a Little Moxie:
http://www.withalittlemoxie.com/2013/03/he-deserved-to-die-he-had-the-temerity-to-be-born-with-down-syndrome.html
Mariah M. of Suncoastmomma:
http://suncoastmomma.blogspot.com/2013/03/standing-in-solidarity-tragic-death-of.html
Rachel Douglas of Words Hurt or Heal:
http://wordshurtorheal.blogspot.com/2013/03/robert-ethan-saylor-death-march.html
Maureen Rich Wallace at SheKnows:
http://www.sheknows.com/parenting/articles/989639/down-syndrome-advocates-call-for-justice-training
Stephanie Holland of Walkersvillemom (a great exploration of the question “Where do we go from here?”):
http://walkersvillemom.weebly.com/1/post/2013/04/frustration-sets-in-or-focusing-on-the-bigger-picture-and-lessons-from-the-sixties.html

FUNNIEST POST ON HOW TO MAKE YOUR NEXT IEP MEETING AWESOME:
Lexi Sweatpants Magnusson, in collaboration with her autism-mom friends, at Mostly True Stuff. Ms. Sweatpants (best middle name for a blogger, btw) has a child with autism and another child with Down syndrome.
http://www.mostlytruestuff.com/2012/11/ways-to-make-your-next-iep-awesome.html

BEST ARGUMENT FOR GIVING YOUR KID AN IPAD FOR THE CLASSROOM:
Not sure how kid farts are related to having an epiphany in your child’s Kindergarten classroom? Then read this post by Kari Wagner-Peck at A Typical Son:
http://atypicalson.com/2013/03/11/on-being-typical-and-not-so-typical/

BEST POST ON THE GIFTS A CHILD WITH DOWN SYNDROME BRINGS TO THE CLASSROOM:
Sheyla Hirshon at allbornin.org turns thinking about inclusion on its head. Inclusive education is not beneficial only for children with disabilities, it’s good for all.
http://allbornin.org/down-syndrome-today-more-then-ever-you-need-our-kids/

BEST CONVERSATION ABOUT ABLEISM:
Hosted by Lisa Morguess at Life As I Know It.
Ableism is defined as discrimination against the disabled or in favor of the able-bodied. I must admit this is not a topic I had thought much about until I started reading this. I’m not sure I’d characterize any mom I know, including myself, as an ableist, but maybe that’s the point – we need to be careful. Fascinating reading.
http://www.lisamorguess.com/2013/02/05/achievement-acceptance-and-ableism-link-up-and-lets-talk-about-it/

BEST PROOF THAT PEOPLE WITH DOWN SYNDROME REALLY DO HAVE A LOT TO SAY, JUST LIKE THE REST OF US:
This short article was incredibly sad and incredibly uplifting at the same time. After being trapped for decades by his inability to communicate, a man with Down syndrome learned to say (and paint) what had been on his mind all those years.
http://www.frasercoastchronicle.com.au/news/creativity-breaking-down-barriers-disability/1537249/

BEST PROOF THAT PEOPLE WITH DOWN SYNDROME CAN BE JERKS, JUST LIKE THE REST OF US:
Kate Conway of XOJane (eye-opening, wrenching, hilarious):
http://www.xojane.com/family/down-syndrome-with-alzheimers

BEST POETS OF DISABILITY:
I’m sure there are others, but these writers have absolutely knocked me to the ground with their unceasing eloquence on the topic of Down syndrome specifically or disability in general:

Amy Julia Becker of Thin Places, hosted by Patheos.com:
http://www.patheos.com/blogs/thinplaces/2013/03/on-world-down-syndrome-day-what-penny-has-given-me/

Jennifer Johannesen of Yes and No:
She is one of the most powerful writers – on any subject – that I have ever read. I devour every word she writes. I particularly like this post, in which she recounts how she dismantled the therapy team for her son, who was born with multiple severe disabilities and passed away at age 12. His last two years were spent simply enjoying life.
http://johannesen.ca/2012/09/dismantling-team-owen/

The columnist Buzz Bissinger at The Daily Beast:
http://www.thedailybeast.com/newsweek/2012/04/29/you-re-21-not-6.html

George Estreich, author of the memoir “The Shape of the Eye,” about raising his second daughter, who has Down syndrome. I have this book at home, and hope someday to write a full review. I love it. Mr. Estreich literally is a poet, as well as an essayist, and it shows in his writing. Here is an interview that gives you a good idea of his sensibility. Definitely check out his book, which recently came out in paperback.
http://www.literarymama.com/profiles/archives/2012/06/an-interview-with-george-estreich.html

MOST POWERFUL POST ON HOW GROWING UP WITH A DISABILITY YOURSELF INFORMS YOUR VIEW OF YOUR UNBORN CHILD:
Meriah Nichols, in a guest post for Patheos.com. I cannot say enough about how this post affected me. Her beautifully written story is unique and gives the reader just an inkling of the incredible strength this mother must posses. It is also a harsh but necessary reminder of how society sometimes treats those it deems “other.”
http://www.patheos.com/blogs/thinplaces/2013/01/i-regretted-my-amnio-by-meriah-nichols/

BEST LOVE STORY: Ok, I know there are many great love stories about couples with special needs, but this one is sooo well done, and by a major newspaper no less. You have to read it! Ellen McCarthy of The Washington Post:
http://www.washingtonpost.com/blogs/liveblog/wp/2013/02/07/when-bill-met-shelley-no-disability-could-keep-them-apart/

MOST LOVING STORY ABOUT FINDING OUT YOUR CHILD HAS DOWN SYNDROME:
I know there are many versions of this too – the “When did you first find out” story; this is a recent favorite. Like many of the families I know (ours included), Tara McCallan of The Happy Soul Project was given a diagnosis of Down syndrome after her daughter was born. She has a buoyant spirit that shows in her writing. Lovely pictures too.
http://www.happysoulproject.com/2012/12/life-is-beautiful-because-reid-layne-is.html#.UY-IVyuDQXw

BEST EXPLORATION OF THE IDEA THAT EMOTIONS ABOUT DISABILITY DON’T FIT EASILY INTO ONE BOX OR ANOTHER:
Ellen Painter Dollar at Patheos.com:
http://www.patheos.com/blogs/ellenpainterdollar/2013/03/taboo-stories-disability/

BEST REMINDER THAT YOUR CHILD’S LIFE IS HERS, NOT YOURS:
If you are the parent of a young child with Down syndrome, make sure you follow this mom’s inspiring blog. Gary Hughes Bender writes about her adult daughter with warmth and grace at The Ordinary Life of an Extraordinary Girl:
http://www.theextraordinarygirl.com/2012/12/186-miles-of-tears.html

BEST INSPIRATION, PERIOD:
Karen Gaffney has Down syndrome. She is also an accomplished distance swimmer, advocate and public speaker. She recently added Honorary Doctorate to her list, from the University of Portland.

Here’s the YouTube video:

And here’s a brief biography of her (click the link and scroll down to her name):
http://www.up.edu/commencement/print.aspx?cid=8305&pid=3144

And this story, about a high school student with Down syndrome being inducted into the National Honor Society
http://www.westhartfordnews.com/articles/2013/04/12/news/doc516871b7db27b594585708.txt?viewmode=fullstory

MY MOST-READ POST
I hope you won’t mind that I include a little plug for my own post about educating children with Down syndrome based on their strengths. This is my most popular post, and is often found by teachers, which feels extremely gratifying. I hope you will find something useful too.

https://modernmessy.wordpress.com/2012/02/19/playing-to-their-strengths-teaching-children-with-down-syndrome/

The “R” Word: A Brief History

15 Aug

This is the best post I have read explaining why casual (and purposeful) uses of the word “retarded” hurt families of children with special needs. It also does a great job exploring the word’s evolution from clinical term to slur.

Life As I Know It

When Finn was but a wee newborn lying on a tiny bed in the NICU recovering from surgery, a blood test confirmed what my midwife had suspected: that he had Down syndrome.  I thought that empowering myself with information might be a good idea, because for the most part Down syndrome was a huge mystery to me.  Really all I knew was that people with Down syndrome looked different, they usually had bad haircuts and wore bad clothes, they were prone to heart defects and maybe some other vague medical issues, and most of all, that Down syndrome was definitely something awful that nobody wanted their kid to have.  Michael and I headed to Barnes & Noble to see if we could find some books on the subject (and I’ll never forget, we saw a young woman waiting in line to pay – a young woman who had Down…

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