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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 Down Syndrome Blog Hop: One Truth, One Tip, One Photo

24 Jul

I love blog hops, because they are a chance to read a lot of people’s thoughts on the same topic, and everything is neatly gathered in one place.

This one, begun on July 21, is a community hop hosted by a Down syndrome writers’ group that I belong to. It’s really the brainchild of Meriah at With a Little Moxie, so be sure to check out her site.

The theme of the hop is (3) on the 21st  — One truth, one tip, and one photo.

(You can also host the hop on your own blog, by grabbing the code at the bottom. Wish me luck as I try it).

ONE TRUTH

 I’m really bad about working on academic skills with my son

I try, I do, just not that hard. Why?  It’s too frustrating, because he either doesn’t want to listen to me or just isn’t ready to do the task. And frankly, I don’t want to listen to myself either. I am impatient and easily frustrated, and the amount of repetition that needs to occur in order for the lesson to be successful is mind numbingly high. So I mostly leave that to the schools and the therapists and the summer camps and I focus on it for about 80 seconds a day. Instead, we work on behavior (“No potty words!”), social skills (“Don’t bite your sister!”) and self-help (“Your pants are on backwards and your shoes are on the wrong feet, but great job!” And I really mean this; I think it’s awesome that he can dress himself at age 4 1/2).

He is doing fabulous; I am happy and the days have a poetry all their own.

ONE TIP

Sometimes helpmates are where you find them, not where you look for them. Open your mind.

Some of my favorite memories are created when my son really connects with someone who hasn’t been vetted, recommended, researched or background-checked. He has some wonderful teachers and therapists in his life, but the ordinary people (or other creatures) he encounters at ordinary moments have a magic all their own.

One of the first people who got him to count 1, 2, 3, 4, 5, when he was younger was my nattily dressed hair stylist, who owns a salon in the city and would let me drag all my kids with me from the suburbs — he really had an affinity for my son. I couldn’t believe it when I heard him prompting my son to count while I stepped into the restroom.

The list of delightful encounters goes on: the fellow mom in the waiting room who shares her iPad; the 6-year-old girl at our daughter’s gymnastics center who befriended our son for no reason in particular other than that she likes him, and now he runs into her arms immediately upon seeing her; the tiny toddler who brings out our son’s protective instincts and tells him “no” when his naughty side starts to show; the neighborhood dads who toss him a ball and whom he consistently badgers to pick him up (“Daddy – up, UP!!”); the neighborhood dog who guards him like a sentry while he wails after getting scolded for yet another dangerous infraction. Perhaps his most important helpmate besides his twin has been his big sister. Though still only 7, she has taught him how to swim, how to eat his food properly and how to play countless games. Throughout his life, she has succeeded where I have failed, stepping in effortlessly without being asked and making things better.

Trust other children to be your child’s most remarkable teachers. Watch for the few, or even the one, who clicks with your child and just enjoy the ride.

ONE PHOTO

Nino beach web edit

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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/

What Exactly Is Going on Here?

7 Apr

Many powerful and heartbreaking blog posts have been written in recent weeks about Robert Ethan Saylor, a young man with Down syndrome who died at the hands of the police in Maryland after he refused to leave a movie theater following a showing of Zero Dark Thirty.

Like a steady drumbeat growing ever louder, these posts from parent activists have served as poignant calls for justice. They call for awareness of the supreme tragedy of the case but also for action — many are pressing for an independent investigation into his death, which seems like it could have been prevented so many times along the way. After Mr. Saylor apparently resisted an attempt by one officer to remove him from the theater, two other offers joined in, and Mr. Saylor ended up wearing three sets of handcuffs and lying face down on the floor. He had trouble breathing and later died; his death was ruled a homicide, and the cause of death was asphyxiation. All this simply because his health aide had told him to stay in his seat after the showing while she went to get the car.

A grand jury in Frederick, Md., declined to indict the officers, who were working off-duty as mall security when they were called to assist with Mr. Saylor. According to a report from the State Attorney for Frederick County, Md., Down’s syndrome, obesity, and heart disease made him more susceptible to sudden death in stressful conditions which would compromise his breathing. It’s almost like they’re saying it’s his own fault for having some health conditions, and yet let’s parse that phrasing a bit further: “stressful conditions which would compromise his breathing.” I don’t know about you, but I don’t normally find myself just happening into situations that would compromise my breathing.

I don’t know what convinced the grand jury that charges against the officers were not warranted. Without having access to the testimony from the 17 witnesses mentioned in the state attorney’s report, it’s hard for me to see things through the jury’s eyes, but I know well there are at least two sides to every story. As the parent of a young boy with Down syndrome, I can see one side more clearly than the other — all I see is that a grave injustice occurred for no apparent reason, and I support calls for an independent investigation because I don’t know all the facts. I would also like to see a full journalistic airing of the story — The New York Times and The Washington Post have written a few great opinion pieces about the case, and the Post wrote a nice, news-oriented feature article with loving details about Mr. Saylor’s life, but a comprehensive investigative piece by a major news department is also warranted — any takers? Finally, daily action by little people with big hearts has the potential to tip the scales. That would be you and me. Tune into this Facebook page and website for updates about the case and to read more great blog postings like this one or this one. For one-stop shopping, check out this blog for simple, concrete suggestions about what you can do to help. If you have a blog, write a post. If you are on Facebook, share one of the links I’ve mentioned.

If you have neither, simply tell a friend about the case. Or sign this online petition. Above all, please please understand that people in the Down syndrome community are not here before you to ask for special treatment. On the contrary, we are asking that you treat our children, our loved ones, as you would like you and yours to be treated. As equals. As beings worthy of respect and dignity. Just because someone does not communicate the way that you do doesn’t mean they don’t understand, that they have no words. (In fact, Mr. Saylor had words — witnesses overheard him saying “I want my Mommy,” a primal call for help that went unheeded. His mother was on her way to him when he died, reports said.)

It does not mean that their wishes can be brushed aside because, hey, they probably won’t even remember anyway if they are mistreated. In another appalling example of how little people expect of those with Down syndrome, a young New Jersey couple ended up separated and humiliated after they sat in the wrong row (but the right seats) at a movie theater for a romantic night out. All because the people whose seats they had mistakenly taken could not be bothered to politely point out their mistake and had the theater staff called. The examples don’t end there. In at least two other documented cases in recent years, the police used a questionable amount of force in dealing with young men with Down syndrome.

I have said it before and I will say it again. People with an intellectual disability are not dumb. They simply learn and express things differently than others might expect. I didn’t quite understand that either before I had a son with Down syndrome. So I am trying to explain to you in words what I have been been processing with my heart, that disability does not mean flawed. That it often means different, but think for a minute and realize that we all are different. That people with Down syndrome and other genetic or medical conditions are special just as we all are special, and sometimes fragile. Sometimes we all need to be, as the saying goes, “handled with care.” Have you ever been pregnant, or had a limb in a cast, or lost your voice but still had to be out in public, or carried a heavy sick child in your arms — or two heavy sick twin babies in car seats? Have you ever been miserably ill but still had to soldier on, go to work, drive the car, run the errands? Have you ever been in a place where you did not speak the language and had an important question to ask? Have you been lost on a strange dark road and confused?

These are all relatively minor ways to be in need, but they have all happened to me, and millions of us. And in each of these cases, I needed to be treated differently — differently than I would normally be treated, as well as differently from others around me. I needed a seat, a door held open, things picked off the ground, a sympathetic ear, a pause, maybe many pauses, a helping hand. Understanding. That’s what I needed, and what I usually got. Mr. Saylor needed understanding too. And respect — lots of respect — many pauses, some common sense and a gentle heart or two. Now, what his grieving family needs is justice. Please do what you, in your small way, can to help. If you belong to a local or national Down syndrome association, ask them what they are doing in this regard and volunteer to help.

On World Down Syndrome Day, Three Truths

21 Mar

Today is World Down Syndrome Day – 3/21, representing the three copies of the 21st chromosome that define Trisomy 21. With a Little Moxie is hosting a bite-sized blog hop (thanks for getting me writing, Meriah!).  She suggested posting three truths – one fact, one fallacy and one photo – in the spirit of promoting understanding and inclusion. So here I go.

FACT: Understanding comes in small moments. Pay attention.

This is hard to describe in words, but I remember the first time I felt some clarity about what it was like to be my son. Not to be his mother, but to be him.

I watched him play in the backyard with his sisters two summers ago. He had recently become a sturdy, independent walker and was a few months away from turning 3. Our nature-loving girls were flitting around, grabbing grass, leaves, worms and whatnot, pulling pieces of branch from our trees and collecting them in sand buckets. Being his sisters of course, they have never excluded him from their games, but nor have they often made special effort to include him; he must fend for himself, which is just as it should be. He followed them around like a puppy, picking up things and dropping them again, tripping sometimes but regaining his balance. Often he fell forward, but stood right back up. He oohed and aahed, not saying words exactly but mimicking their cadence, imitating their pretend play. He craned his neck to see inside their buckets, always a step behind but yearning to be right where they were. Yearning to be right where they were. It hit me in a flash. Here was a small boy, gentle-souled, wanting only to be a kid, and totally succeeding without ever noticing all the walls that had to be knocked down along the way.

FALLACY: People with Down syndrome are not smart.

Though they may not be intellectuals in the academic sense and often their skills cannot be measured accurately on standardized tests, people with Down syndrome can accomplish great things. Because they are good visual learners, many children can read at or above grade level. Most attend regular schools and do everything their typical peers do. These days, more young people with Down syndrome are going to college, learning to drive and getting married. Among the most impressive gifts people with Down syndrome posses is a finely tuned emotional intelligence. It is one of their top strengths – yes, strengths. We assume that people with disabilities are flawed and our thoughts about them stop there.

Well, all of us are flawed. And all of us, including people who have Down syndrome, or people who are totally nonverbal or immobile, possess unique talents. One of my son’s talents is a cleverness about how to manipulate people. If you don’t believe me, try sitting near him with your iPad or smartphone and see how readily he chatters to you about his favorite things like Mickey Mouse or animals, sidling up to you and nearly sitting on your lap like he is in love. What he really wants is for you to let him play a game on your device – he loves people, but he loves electronic things most of all. And you will let him play this game, because isn’t he just the sweetest thing? (No, no he isn’t.)  Don’t ever treat a person with a cognitive disability – or anyone, really – like they are dumb. Chances are they understand more than you can ever imagine and posses a profound relationship to their world.

PHOTO: Schoolboy, 2012

School has been such a blessing for him and for us. We love it!

Schoolboy

At the top of this post, I mentioned that World Down Syndrome Day is about understanding and inclusion. And it is. But after the recent tragic death of a young man with Down Syndrome at the hands of the police, it is also about action. Read more: a pitch perfect editorial from The New York Times and a very comprehensive article by Maureen Rich Wallace that explains it all.

Thankful for This Hot Mess, And for You, Dear Readers

3 Mar

Just writing a short post to extend some love to those who have made this blogging journey with me. The fourth anniversary of our move from New York City to North Carolina is approaching, and I figured now is a good time for a little reflection.

First of all, thank you to all my readers, made up of friends, family, colleagues, virtual friends and strangers who have stumbled across my blog. It is a great pleasure to write, knowing that I have responsive eyes on the other end. It is only by your grace that I continue to punctuate cyberspace with my keystrokes. Thank you!

Here is what else I am thankful for — the time to write. Sunday mornings are often when I get up early and sneak out to my local coffee shop for the space I need to think. (Thank you, Poppyseeds Bagels! Craving some real New York bagels? Check it out!) I’m thankful for my editor, Bob, a professional journalist who reads most of my posts and suggests ways to make them better. He always knows exactly the right things to say! Yes, I think it’s safe to say I am one of the few unpaid bloggers with an editor. Bob and his wife, Sherry, own Early Bird Developmental Services, my son’s main therapy provider when he was a baby. One fine day a few years ago, Sherry wisely and brightly suggested I start a blog, as she knew I often felt frustrated and needed some sort of outlet. “And Bob can edit it!” she said. And so it was born.

Also, I will be very grateful for the coming weekdays,  glorious in their ordinariness, when the kids are in school and everyone is back to a tried and true routine. We just don’t do as well without schedules – weekends and vacations are fun, but messy. Or maybe a better way of putting it is: I am naturally chaotic and unpredictable, and having too much free time just exacerbates this problem, which seems to be part of our DNA and gotten passed along to our kids. Children with special needs like my son don’t do well with too many unstructured blocks of time. They don’t get the input their disordered sensory systems desperately need and it often shows in their behavior.

Over the recent winter holiday breaks, I spent most of the time being sick, much like the rest of America. When I passed out for a two-hour nap one day, I awoke to find that my oldest daughter, age 7, had decorated the play area for “Mommy’s Love Party,” with hand-drawn pictures of her and me, and signs that read “I Love You Mommy.” Truly, you could not ask for better expressions of fondness. She is such a lovebug! I adore her, and I so treasure her eagerness to put her love on display. (I’m laminating those works of art so that during her teenage years, I can show her that she did in fact once love me.)

love mommy

Our son with Down syndrome, who is 4, spent much of those vacation days following me around like a puppy. One minute could not pass by without him yelling “Maaa-ME!” à la Marlon Brando in “A Streetcar Named Desire.” It was either “Maa-Me wook,” for me to look at his latest crayon stroke, or “Maa-Me elp me,” for me to assist him with some task he has completed on his own many times (or that he shouldn’t be doing in the first place.) Trust me, I love what this represents for his speech and cognitive abilities, but making dinner really needs to stop taking over two hours.

One time, before we even made it to 10 a.m., he had been charged with multiple counts of mischief. He shattered his beloved piggy bank, which he’s not supposed to touch without permission. Our corner joint saw his little face relegated there multiple times, once for hitting his sisters with the broom he was supposedly using to “cwean” the floor.  During an attempt at independent potty time, he put the gross end of the plunger up to his face to use as a bullhorn. Another time, he wet his pants and was told to put them in the bathroom sink so they could be washed. Well, he couldn’t wait for me to do it, so he did it himself. In the toilet. Yeah. Luckily, the water was clear and cleaning up the half-inch or so from the floor did not take too long.

One Saturday we decided to head out for breakfast at our favorite restaurant before doing a little shopping. We were seated at a table that was half booth, half chairs. Before I could tell him to climb into the (more stable) booth area, my son sat atop a chair and leaned on the table in front of him. The table proceeded to tip forward and spill all its contents (silverware, salt shakers, sugar packets), including him, onto the floor. No one was hurt in the making of that anecdote.

But we sure know how to make a grand entrance. Thank you, son, for keeping us on our toes. Sorry about passing along my crazy genes, but at least life is never dull. For this, I am truly thankful.

And for these hats, which we fell in love with during our shopping trip:

funny hats

Panda Bear: Gentle big sis

Angry Bird: Grumpy, feisty little sis

Sock Monkey: Goofy little brother

In case you missed my other latest work, I had the recent honor of being a guest blogger on the web site of Amy Julia Becker, a talented and respected book author who writes about faith, culture and disability. She has a daughter with Down syndrome and a blog called “Thin Places” at //www.patheos.com/blogs/thinplaces/ You can read my article here. Please also spend some time exploring her blog; she’s a truly graceful and grace-filled writer.

An Invitation to Click

24 Mar

I’ve updated the “Blogroll” on my homepage. It has some great resources for parents and educators of children with special needs, especially Down syndrome. Check it out! Let me know what other web sites you have found useful as a parent, loved one, or educator of a child with special needs.

Speaking of clicks, if you click on this link, you’ll find a list of blogs about Trisomy 21. Some of them I’ve read and enjoyed, and some I still want to explore. For more ideas, check it out. (Oh, and under “T” you might see the name of a blog you already know and like! I just asked, and they added me. Thanks to them!)

http://www.squidoo.com/downsyndromeblogs