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The Opposite of Boring

22 Mar

This post is part of a blog hop in honor of World Down Syndrome Day on March 21 — the date is 3/21 for the three copies of the 21st chromosome that cause Down syndrome. (It will surprise no one who knows me that I am a day late on this).

The other day I was sitting around with my three kids talking about opposites. Our little kids, boy/girl twins who are 5, are in preschool. So they think in terms of pretty basic opposites like in and out or up and down. Our oldest daughter, who is 8, likes to play around with ideas a little more and she was trying to figure out the opposite of things not normally known for having antonyms, like rainbows and dogs. (“Well,” she said, “isn’t cat the opposite of dog?”)

Soon we were cracking up because I was asking, “What’s the opposite of nose?” and her little sister would say “No nose,” and so forth, with all of the body parts. The conversation came around to ourselves. The opposite of little sister was “not crazy” and the opposite of big sister was “not weird,” and the opposite of me was probably something like “nice.” Then the girls asked me what would be the opposite of their brother, who has Down syndrome. I thought for just a few seconds when it hit me: boring.

My son is many things: full of energy, willful, persistent, hard to motivate, uproariously funny, frustrating, defiant, loving, silly, curious and strong. But he is anything but boring. He has never been boring. Not when he was learning to crawl and would lie on his belly and shake his legs in the air furiously behind him for a happy dance. Not when he lights up like a Christmas tree at the sight of a dog. Not when he says “No, mine’s!” about every toy that enters the house that someone else tries to play with. Not when he puts on a “show” by using a blanket as a cape and pretends to be his latest favorite hero/princess/super pig. Not when he shrugs his shoulders at an important question (“Where did you put the remote control?”) and says “I… don’t… know.” There is something particularly enchanting about hearing my language-delayed son learn the correct use of a phrase that rolls so easily off the tongue for most of us.

A typical day for him starts with me rousing him from bed and him grumping about getting up, possibly calling me “meanie,” before laughing and digging his head into my neck as I pick him up and carry him downstairs. (I still carry all the kids down in the morning if they don’t come down on their own, just because I can and it reminds me they are still my babies.) He goes to the bathroom then runs for his robe and then if he sees that his big sister awake, he tells her to “Stop it,” with a hurt face, even though she hasn’t done anything to him at all – retribution for all the times during the previous day that she’s pestered him. He’ll get to the breakfast table and act all surly because I won’t let him dump ALL the milk in his cereal like he wants to. Later, he’ll get dressed and put his shoes on the wrong feet no matter how much I remind him not to and despite the fact that I have written R and L on them (correctly) and he knows how to read R and L and what they stand for.

In the car on the way to school, he’ll say over and over “Put Frozen song on” until I put on the Frozen soundtrack so he and his twin sister can sing every last word and even act out “Let it Go.” (I won’t torture you with a video of that.)

The most interesting part of his day probably happens at school, which I am not privy to. But I can tell you that his school is an incredible place, where teachers have great respect for their little charges and where the children often direct their own learning. My son has become quite taken by the camera this year, and his teachers tell me that he’d rather stay behind the camera than in front of it. They send me some of his work once in a while.

Here is a picture of one of his best gals being hugged by a teacher.

PreK 1

This shot shows my son multitasking. He’s talking on the phone, “Calling Mommy,” as he told his teacher, while asking a friend to pose for a picture.

PreK2

Here are a few still-life shot from his classroom environment, including his shoes — placed correctly.

PreK4

PreK5

Image 7

I love photography, and it would be incredible if he made it part of his life. This thrills me so much!

After I pick the twins up from school, a typical day might include a visit to his speech therapist, or a trip to visit his occupational therapist at the horse farm, where he practices fine motor skills on horseback. Going there is like therapy for me because I get to enjoy the uncluttered outdoors and the quietude of nature and feel the sun on my face without kids pulling me in a million different directions. Other days, his twin sister goes to gymnastics – she loves it – or we just go home, eat lunch and take naps until it is time to pick up big sister from school. (Now that, my friends, is the kind of boring that I like.)

When we get finished with those things, it is time to make dinner. Of all the kids, my son is the one who asks most often to help in the kitchen. I usually cringe because I don’t feel like dealing with the extra effort it takes to instruct a child in the culinary ways,  especially a child that likes to lick and touch everything, and I mean everything. So we just wash our hands many times because I am trying hard not to shoo him away when he states matter-of-factly, “I gonna help.”

The other day I had him chopping mushrooms for vegetable soup with this super cool kid knife that cuts food but won’t cut skin. That was his only task, and then he was whisked away by his sisters to play outside in our backyard. I was proud of him for doing a good job — and proud of myself for having the patience to let him help – so I was eager to show us off to my husband when he came home from work.

“Can you tell Papi how you helped make dinner tonight?” I asked my son. He was stonewalling us, as per usual, babbling something incomprehensible rather than answering the question. Finally on my fourth or fifth try, he told his father:

“I put the poop in the soup.”

This kid is obsessed with poop, although just to reassure you, no poop was placed anywhere near the soup. It’s just a thing of his – and I guess a thing of ours, since we have spent the better part of two years training him to use the potty consistently and independently. At school, he and some of his best buddies make “poop soup” by stirring wood chips into puddles of water. And one day when I was making dinner, he came right up next to me, and out of the blue said “Whatcha makin’ Mommy, chicken poop soup?” (Um, no, son, I am not in fact making chicken poop soup, but thanks for asking.)

It’s fun to recount these tales about him, mostly because I just want people to know that raising a kid with Down syndrome is equally as wacky, frustrating, heartbreaking, uplifting and fun as raising any other kid.

I want to take this chance to thank some especially fascinating people who have made our son’s journey not just successful, but incredible. Everyone at school, most especially his two gifted teachers, has always done the utmost to encourage his confidence and boost him up as a full member of the community and as a student.

This is a typical preschool that happens to value all children, including those with special learning needs, and they have had much success in the past with children with Down syndrome, so my son is not the first. The wonderful parents in our class have told me that their children don’t notice anything different about our son and talk about him just as they would any other child in the class. When we go to school functions, he gleefully exchanges hugs like all the other kids and is just as quickly grabbed by the hand and led away to play. In these simple acts lies a wealth of happiness for this momma. Thank you all from the bottom of my heart.

These final shots reveal one big reason why he loves going to this school. Because he can be just like his twin, whom he admires above anyone else except his big sister. We put the twins in the same school but  separate classes because it gives them space to breathe and have their own identities. We feel they function best when they can do this little dance of being together and yet apart. When they separate and then come back into each other’s line of sight, a tiny spark is lit. And that spark ignites a million more, creating for all of us a life most interesting.

PreK 6

A teacher captured this sweet twin moment where he is watching her on the playground from inside his classroom.

Prek 7

 

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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……

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.

Up, Down and All Around

7 Aug

Joy and grief. Clarity and confusion. Ease and difficulty. Twin emotions that came with the birth of our beautiful, amazing twins nearly three years ago. One, a girl, snuggly and often crying, but simple to figure out. The other a boy, born with Down syndrome, squirmy and quiet, hard to hold, host to some odd little traits that needed sorting through – and still do. Now they will turn 3 in a few short months and start preschool programs, flying from the nest, half finished, into a bigger world. Their older sister will start Kindergarten, the first step along the road that only leads further and further away from hearth and home. What I get out of this deal is a little more time to myself, and a new routine for the kids that maybe, just maybe, will make them a little bit less crazy, more in control of their behavior. How do I feel? In a word, ACK!

Comedy and Tragedy

Courtesy of carolclarinet via Flickr

Elated and freaked out. Happy and so sad. Excited and nervous. Those twin emotions, back again. The children are gaining independence, a wonderful thing. Learning how to survive on their own, without their sometimes overwhelmed mother at their side. But they are so full of life, such fun kids, so innocent, and our lives feel unusually blessed most days. I know in my heart that school will be just what they need, but change is always unsettling. Will we be able to preserve our little cocoon? Will our sweet and sensitive big sis be OK in the rough-and-tumble world of public school? (I’m sure she will, actually). Where did this year go, the year I was supposed to be savoring every moment with the Three Bears and blogging about it?

I’ll tell you where it went: the fall, winter and early spring went by in a blur of sicknesses, hospitalizations and operations, minor ones. Snot and saline spray were my constant companions. It was not pretty. We were trapped inside and I was always on the phone with doctors or nurses or billing offices. I knew it was bad when my 5-year-old proudly showed me a drawing she had made on a big piece of poster board. It was an awesome piece of work, very detailed. The outline of a house, with a wreath outside for Christmas. In the living room, a sofa with three figures on it, big sis in the middle flanked by the twins on either side. They were watching TV. Off to the side, a woman in a dress, talking on a phone. Me, smiling at least.

“Oh,” I cringed as I spoke to her, “is that how you feel? That all you do is watch TV while I talk on the phone? That is so sad!”

“But Mommy,” she replied, pointing to the small square devices they each held in their stick-figure hands, “we each have our own remote controls and we’re watching our own shows! It’s not sad, it’s great!”

That drawing now has pride of place, taped to the wall of our living room. It’s a living reminder of all the twin emotions in our lives — frustration and laughter, getting stymied but making do, falling ill but getting better. Since late spring, we have been freer — less sickness, more time for playdates, strawberry picking, riding bikes, trips to the park or the pool, bowling, lots of ice cream and other treats. The other side of the coin is showing. I like this side. Please don’t flip back again come fall, please, I silently plead.