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.

I Found a Monster Inside Me, And I Put Her to Work

18 Nov

What will they remember about their childhood?

Will they remember those happy, sunny days that didn’t end well, because Mommy could only hold it together so long, and then broke down at the very end, when we were almost at the finish line? Going to bed is supposed to be the peaceful, gentle end to days overflowing with activity. And usually it is.

But then there are some days – a few of them occurring lately – where the end is a crescendo of frustration, where tired Mommy, thin of patience, loses it. Why? Because I have already held it together and smoothed things over 535 times that day with a smile on my face. The time for smiles is over.

The girls are bickering, again. Our 4-year-old son with Down syndrome, in the early stages of potty training, has saved his daily “deposit” for his clean pull-up and fresh pajamas even though we just sat him on the potty, where he happily read for 15 minutes. I start to talk harshly, bark orders: “Put on your pants!” “Get in bed!” “Be quiet!” And so on. I hear a few sniffles, can feel the guilt creeping in. I apologize, give everyone sweet goodnight kisses, but I’m still furious, and I’m sure they know that. My husband comes in to see what is the matter because he hears me stomping around. I express my frustration with our son. “He’s not doing it on purpose,” he says. “Yes he is!” I retort, like a school child.

Something about having three children has brought out the worst in me. I cannot figure out if it’s our son’s special needs and stubbornness, the twins (he has a typically developing and equally stubborn sister) or just the combination of my hotheaded Italian genes and too many small kids at once.

ME, THEN: WITH ONE CHILD

© Shazeen Samad, 2005

 

With our first daughter, now 7, I felt like the proverbial good mom, or at least good enough. She had a nice routine and got to bed on time. I worked full time but weekends were ours. Our bond was – and is – incredibly strong and raising her was pleasant, especially once we got through the first year of sleepless nights. Both of us (toddler her and mommy me) had a few memorable temper tantrums where I thought the world was coming to an end, but for the most part, she did not need much discipline. When you told her something, she usually listened, and we were consistent about enforcing the rules of the house. Congratulations to us!

But we had to try for a sibling for our precious one. Instead, we got two – a blessing for sure. And now – wow!! Monster mommy best describes how I feel most days. Exhausted, haggard, yelling in anger, always trying to find a way to carve out space for myself, to shave some minutes off bedtime so I can enjoy a quiet house. I clung to my firstborn, but now it’s more like “Don’t let the door hit you on the way out!”

Don’t get me wrong; these adorable kids are my life, literally. My days are filled with wonderment and laughter. I also know all the “right” ways to discipline children and control myself, having read many books and been trained and counseled by the coterie of therapists that have been in and out of our lives since our son’s birth. But here’s a confession: sometimes I am just too tired to do the right thing.

I am the stay-at-home parent – a great privilege — and even if I hadn’t quit my job in New York because we had to relocate to another state, I would have been fired for taking too many days off. One or other of the twins was sick constantly the first two and a half years of life. There were hospital stays for pneumonia and asthma attacks. Our pharmacist knows all of us by first name because we were there so often to pick up medicines. We know practically every nurse at our busy pediatric practice. I still jump every time someone coughs because I dread the outcome. What I’m trying to say is, my nerves are fried! I have burnt the candle at both ends and now there is no more candle.

I’ve realized something important, though. I’m actually not the nice person I thought I was. Having been raised by strict Catholic parents, I had always prided myself at the very least on being a “good” person. Not in the sense of following every commandment, but of being well-mannered, kind, generous, moral and civic-minded. You know, the type of person who would whole-heartedly embrace my disabled child.

ME, NOW: WITH THREE KIDS

© Brett Wilde, 2007

Only it did not come to pass that way. These four years have been the most challenging of my life emotionally. Do you know what it’s like to feel that maybe you don’t truly love your own child? I do. It’s perhaps the worst feeling I have ever experienced, like a vast darkness that swallows everything inside you. I don’t feel that way now (most days), but the road to accepting him and identifying my own flawed parent-self has been a long, winding one. We are not yet finished walking this path, nor I imagine will we ever be.

But at least I have some vague sense that we know where we are going. My son and me, both of us as human as human can be. Something interesting about the genetic anomaly of Down syndrome is that it manifests as humanity, writ large. My child with Down syndrome has stumbled more often than danced, resisted more than complied, been misunderstood more often than comprehended, and failed more often than succeeded.

This same description applies perfectly to me, and maybe to you too. Only for us, the fault would be our own, while my son is blameless. But let me ask this: have you let the beauty that is also your human birthright overtake you the way my son has let it overtake him? He has laughed more heartily than he has cried, felt and spread joy a thousand times more than sadness, let curiosity rather than fear rule his day and greeted every person who has crossed his path with a hearty embrace.

So no, I am not a good person and don’t say that I am. I am not quiet, gentle, patient and wise. I am angry, stormy, impatient and impulsive – just like my son! But I’m also strong, feisty, smart and tough. I will fight tooth and nail for what my kids need most. I will be hard on them if I have to for their own good and the good of society. I will not raise entitled children who think the world revolves around them, but neither will I tolerate people who try to pigeonhole my son into expecting less from himself because he has Down syndrome. My girls will learn manners of course, but I hope what they learn most of all is confidence. I want them to push back at the world in ways I was unable to do when I was younger, because I thought being nice meant being meek.

So the next time you get angry with your kids over small things, remember to apologize for the anger (not the consequences). Then remind yourself that it sometimes takes an angry woman to raise strong children.

Reading: It’s Not Just for the Kids

21 Aug

You often run into some great people online. I happened to meet a fellow WordPress blogger, Dr. Connie Hebert, who is a nationally renowned reading specialist, teacher of teachers and motivational speaker. Her special focus is on helping struggling readers. We got to emailing and she agreed to talk to me for a blog post about helping all children – typically developing and those with special needs — transition back into school mode now that summer is slipping away (sad). Keep in mind that my son with Down syndrome and his twin sister are almost 4 and far from being readers, but good habits must start early. And our oldest is 6 1/2 and loves to read, but could always use a little nudge to keep her going.

My main question for Dr. Hebert was this: how do you motivate kids to read without resorting to nagging? Like most parents I know, our house has many books, we read to our kids every day (sometimes only for about 30 seconds, it seems!) and we visit the library often and let them choose their own books. But that still doesn’t seem like enough sometimes. How many of you have wonderful, unread library books sitting forgotten on the shelf for various reasons, like because the kids would rather watch TV… guilty confession. Maybe it’s just us…

Dr. Hebert had a great answer to my question, and maybe you’ve heard the answer before, but when she explained it sounded like a revelation — have each child create a Book Box of his or her own. “With young children and elderly people,” Dr. Hebert said, “what do they want? They want choices. They need to feel they are in control.” So have your child create a Book Box. “It can be a Tide box with a handle,” she said, “or some strong cereal box, or big plastic tubs.” Basically, any deep container will work.

Then you and your child both fill it up with many different types of reading materials, in addition to books that the child enjoys reading. These might include maps, cookbooks, menus, phone books, dictionaries, catalogs, newspapers, magazines, comic books, or AAA tour books. For pre-readers, especially kids with special needs who are often strong visual learners, wordless picture books are a great choice to help with vocabulary development and word retrieval. You can make your own wordless books, or find them with a quick Internet search. Dr. Hebert likes wordless books by Mercer Meyer, Alexandra Day and David Wiesner.

Parents choose some things for the box and the child chooses some things — the control freak in me likes that I can choose too! (Someone has to make sure the puppy book they begged for at the library actually gets read).

Here’s how it works:

Set Aside a Quiet Time: In teacher parlance, it is called “DEAR” time — which stands for Drop Everything And Read. Apparently, you have to set aside an actual time for this every day and make it sound really cool. Oops! I usually make the kids sit down and read when they are getting on my nerves. Is that wrong?

Your Child Can Sit Wherever She Wants: In the kitchen, on the floor, at a table, or better yet, under the table! Try outside in a playhouse or in a big appliance box that’s been converted into a hiding place. “Now it becomes fun,” said Dr. Hebert.

Fill the Box With More Than Story Books: This was the revelation part to me. Book Boxes can and should include brochures from the car repair shop, restaurant menus, catalogs, comic books, maps, a kids’ magazine or section of the newspaper. Even, said Dr. Hebert, “recipe books you don’t use anymore, phone books and of course books or novels from the library that are easy and motivating for kids to practice reading with.” With all the story-type texts they are given to read, “kids begin to think reading is only for reading books,” said Dr. Hebert, “but the majority of things we read are informational: a map, or a brochure, for instance.” If your child gets too focused on reading catalogs and brochures, she advised, set aside a day once a week where they have to read a book first for a few minutes. If your child comes home with a leveled reader from school, put a special sticker on it indicating that it needs to be read first during DEAR time before moving on to other things, Dr. Hebert said.

Keep It Fresh: Also about once a week, work together with your child to trade out a few items and add new ones. Some children may want to clean out the entire thing, Dr. Hebert said, and some may want to hold onto things for a long time — whatever works for your child is fine.

It’s Great for Almost Any Age: Think about how much fun 2-year-olds have putting things into containers and chewing on magazines! Now you can call it literacy time and beam with pride when your husband comes through the door and you still smell like mashed peas 🙂

Unleash Your Child’s Creativity: Since it is your child’s Book Box, encourage him to decorate it as he wishes, or cover it, or put stickers on it. Old wads of gum are not as good, but since this is my house, I’m guessing my girls might include a piece or two.

Encourage Writing Too: Dr. Hebert says she likes to put a journal in the box too so that kids of all ages can write or scribble about the book, draw pictures of it, change the cover into their own creation, or write new words they’ve learned. “Never separate reading from writing,” she said. Part of being successful at reading is “feeling like a reader and writer,” she said.

Aim High: If he’s in kindergarten and wants to put a Harry Potter book in there, great, said Dr. Hebert. “Let him page through it, see the chapters, read the Table of Contents and find the pages, look at the front cover, the back cover.” He has the freedom to put whatever book he wants in there, even if it is well beyond his comprehension.

You’d Better DEAR Too: Motivate your child by doing some reading of your own — modeling is the best way to teach. Set a timer for 20 minutes, for instance, though even a few minutes is great to start. You can have your own Book Box. “I become the child,” Dr. Hebert said, “and I go through my own box and talk about all the great things I’m going to read.” For instance: “Oh, I’m having people over on Sunday, I think I’ll take out this recipe book and figure out what I’m going to make,” Dr. Hebert said. Always talk about what you are going to read and why you’re going to read it.

This sounded like so much fun I couldn’t wait to try it. My kids liked the idea right away. We used a big Tupperware-type box with a lid and some plastic storage bins from Ikea that are quite cheap and easy to replace. My oldest girl, age 6 ½ and going into first grade, wanted to decorate it before she started reading, while her younger sister, who as I said is almost 4, filled the whole thing to the tippy top and then started paging through all the books. Her twin brother, who has Down syndrome, joined us later, as he was still napping while all this was going on.

Soon, the oldest was finished decorating. She had adorned hers with stickers, including some letters spelling her name. In glitter glue, she wrote the word “Read,” and then in letter stickers next to it, she spelled out “Books.” Above that, she affixed a little sign saying, “Read it Lern It.”

The miracles didn’t stop there. Her little sister found a few books that had tables of contents with little pictures next to the titles, and she was looking up different chapters by page number. This is the stubborn girl who knows her entire alphabet but says “B” when you show her the letter K because she absolutely does not want us to figure out that she knows anything, lest we start asking too many questions while she’s playing.

For nearly two hours it went on like this. That’s right, I said two hours.

When our son woke up from his nap, he was not too impressed with his own Book Box. He seemed miffed that I was going to sit and read my own book rather than read to him, but soon he was sharing a book with his twin and cackling hysterically and all was right with the world again. Another day, he read through the books on his own, talking himself through the pictures. Mind you, I have no problem reading to the little ones at DEAR time for a few minutes, but I want to teach them independence – and I want to read too! For the first time in months, I finished an entire magazine article while the kids read in my vicinity. That’s right, an entire article! Of more than 3 pages too – I could not believe it. We are not able to work in DEAR time every day, but you can bet that’s what I’m aiming for.

You can read more tips in Dr. Hebert’s books “Catch a Falling Reader” and “Catch a Falling Writer,” published by Corwin Press corwinpress.com Her books include timeless principles for catching struggling readers and writers in grades K – 4.

Check out her posting on how to recognize and correct 6 common habits of struggling readers, along with other useful tips on her blog: http://drconniehebert.wordpress.com/

A big thank you to Dr. Hebert for sharing her knowledge. Please check out her Web site: http://www.conniehebert.com. There is useful information for elementary kids of all developmental types.

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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Just Keep Going

15 Jul

Our oldest daughter, age 6, has been telling me lately “I love you more than you love me!” or “I love you googol times more than you love me.” (Since learning some mathematics, she has been fascinated with the concept of big numbers and infinity).  She’s not saying this to make me feel bad that I’m not loving her enough, though sometimes I worry that maybe I’m not! She’s expressing as literally as she can her deep love for her completely imperfect mother. I feel unworthy of such devotion even as I am thrilled and warmed to the core that she feels about me the way I feel about her. She is my life, my first baby love, my treasure of treasures, the most sensitive of our three children.

I let her down a while back, it was a small thing, but I felt it hard in the moment. Mostly I am happy with how we dole out attention to each of our little ones, her and her twin siblings, a boy and girl, age 3. We try to spend individual time with each of them, even if its only a few minutes. So I was thrilled that I was able to volunteer at her end-of-year class party, helping with face painting and snacks and planting little seedlings.

As I busied myself bustling about, she kept tugging at me, “Come outside Mommy, come outside and see me!” They were playing games out there, dancing and doing the limbo. “In a minute, honey, I’ll be right there,” I replied. She asked me again, maybe three times. “I’ll be right there,” I said, sucked back into the vortex of sugar-fueled Kindergarten madness. I meant to go out there — the door was inches from me. I meant to, I’m coming, I’ll be there…

When I finally got outside, the courtyard was empty. It was over; I missed it. “You missed me doing the limbo, Mommy. I wanted you to see me,” she sounded sad. My shoulders fell, I sank into the ground with disappointment. How simple her request, and I could not grant it; the one wish that requires no money, no sacrifice, barely even any time at all. Just attention. And I couldn’t give it. Too busy, yet again.

What are we so busy with that we cannot even be there to witness what is important to a small child? Too busy for the fleeting fun things that added together make for a good life. How can I expect her to always give me her infinite love if I can’t give her 5 minutes when she asks specifically for it?

She got over it and I’m not agonizing about it, truly. Life goes on and things have to get done and sometimes we do miss the golden moments, but there will always be others. As long as we are there for most of them, I think we’ll be judged successful in the end, whatever that means. I have been trying to banish the guilt that comes from fretting over small things, as I wrote about in my last post.

When I start to take stock of how I’m doing, I naturally think of my own Mom, who is the type of person who always feels she’s not doing enough of something, always wishing she could do better. (She’s also my blog’s biggest fan — hi Mom!) We live far from each other — she’s in my hometown outside of Philadelphia and we’re here in North Carolina. She has expressed to me in the past some regret that she has not been able to pass on any legacy to her grandchildren, has not taught them anything lasting. I’m not sure if she was thinking piano lessons or what — she can read music and played the cello in high school — but I know what she means. Even from far away, she wants to matter in their lives, have an impact.

A very good Mom

So I just wanted to tell her something from my fairly new perspective of a parent who is realizing it’s very hard to discern just what will make an impression on your kids. Of all the lessons you try to impart each day, in every little way, which ones will stick? I think it is these:

-A good mom will color a picture with you when you ask, even if you are still scribbling all outside the lines.

-A good mom will watch your favorite cartoon with you.

-A good mom will cook for you, especially when you are sick, when you get little star pastas in chicken broth to make you feel better.

-A good mom teaches you a love for books and songs and pretty little things in nature.

-A good mom brings your favorite breakfast on a tray in bed for your birthday — strawberries in cream.

-A good mom sits by your bed to comfort you when you are scared or nervous or not feeling well.

-A good mom serves as your “alarm clock” during the school year, waking you gently but firmly after you have silenced your real alarm clock too many times with your weary teenaged hand.

-A good mom always believes in you, even at times when she may not agree with you. She is able to trust that sometimes, even kids know best for themselves.

In these scenarios, the good mom is her. She did all these things for me, her only child, when I was growing up. And her legacy will be that I will do these things for her grandchildren. I hope she realizes that is enough, more than enough, in fact. It is simply the best that can be done in this crazy world.

(And don’t forget, Mom, you taught them to play “Twinkle Twinkle Little Star” on the piano, and you always brought a craft for them to work on with you — and you had the patience to teach them how to do it.)

My Mom has been dealing with some tough health issues lately and spending more time than anyone would want to in the hospital; now she is in a nursing home and mostly confined to bed. All of it from the effects of dealing with breast cancer for more than 15 years. Even amidst all that, she has managed to stay upbeat and her voice is strong when I talk to her on the phone.

“What is your secret?” I asked her recently. “How do you manage to keep your spirits up?” I have felt inadequate to the task of helping her do so.

“I just keep thinking about you and kids,” was her reply. That’s it, nothing more. I think that’s enough. You did a good job, Mom, are still doing a good job. And so am I. And so are you out there, dear reader. Keep going.

Better Than Perfection? Try Reality

8 Jul

Do you get as annoyed as I do with that tired old mantra to just “Do your best”?

Do my best?

What if my best is a half-hearted, sleep deprived, muddled grasp at reality, at sanity, at getting the lunches packed? What if my best is cheese sticks and goldfish crackers, wrinkled clothes and mismatched socks, cereal for breakfast every day? What if my best means yelling at the kids when I should be teaching them? If it means I haven’t exercised in years? If it means I sometimes neglect friends, husband or family, because I’m too preoccupied, too tired, too busy with self-imposed business? What if it means I forget friends’ birthdays and make chicken nuggets for dinner even though I know perfectly well how to cook a decent meal?

I should just keep doing all that, then?

Really….’cause I was sort of hoping that could change someday, that maybe in the future, at some unforeseen and impossible day, I would do just a little better. Yes, better than this current mediocre mess some might call “my best.”

But what if this, as they say, is as good as it gets?

Here’s a revolutionary idea: let’s pause, and instead of taking stock of our flaws and the things we aren’t doing “right,” let’s remind ourselves of what we ARE doing well. On the days I’ve actually turned things around like this, I’ve felt pretty good about the “job I am doing,” a.k.a. mothering. For instance, the first day of summer was a mess of a day — the kids woke me up instead of the other way around (no time to get coffee first), the house was a disaster, with piles of unfolded laundry as yet untended. The kids were so bored while I put together shopping lists and returned phone calls that the oldest smashed her toes on a piece of furniture and limped around the house, and our son spent the better part of the day hitting his sisters and getting mad at various things, including a) me and b) nothing at all.  But for about four magical minutes, they danced around in the rain outside with their very own kid umbrellas and were happy. They actually got a bath that night too. I’m calling it a good day, so there.

© heinz6x57, 2007

It works on a larger scale too — banish your own guilt as you follow along:

-Our kids all love books, including our 3-year-old son with Down syndrome.

-Our kids all love each other. (Give it time, they are still young.)

-They go to bed each night with their comfy blankets and pillows and loveys and get up in the morning. In between, they mostly sleep.

-They eat food and grow and they have lots of clothes to wear.

-They liked school and made friends.

-They watch TV, sometimes a lot, and their heads have not exploded yet.

Most of us parents, especially mothers, are always trying to live up to an imagined ideal — I don’t think any of us are aiming to be perfect, but just to get to the point where we feel somewhat organized and in control of our lives, our kids, our home, our jobs; even that can be elusive. If we keep focusing on the minutiae, we’ll never realize how far we’ve come. Keep working on the small details, every day, but to see how you’re really doing, look at the big picture. By that measure, there is no need for perfection and nothing to control. Nothing is more perfect than having your little son with special needs wave at you proudly from across the room and say “Mommy” at his end-of-year party at his big bad public school (which we love, and his particular classroom is small and cozy).  He was so proud and his smile filled his face. We blew kisses back and forth for a few minutes, and time stood still for just a little while.