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In His Own Words: A Day in Life, 2015

15 Mar

What is a day in the life of a person with Down syndrome like? That’s the question posed by the writer and advocate Meriah Nichols and the Down Syndrome Diagnosis Network, whose mission is to provide accurate, up-to-date information to parents receiving a prenatal or post-natal diagnosis of Down syndrome. The answers, in honor of World Down Syndrome Day 2015 (Saturday March 21) are a beautiful mosaic of life in all its interesting variations. And by and large, they look like anyone’s life, extra chromosome or not. (You can also find other great ideas from the National Down Syndrome Congress at this link.)

I wanted my son to participate this year, since he is the actual person with Down syndrome. He helped me choose the pictures and I helped him “edit” what he wanted to say. He is 6 after all. The whole time I was typing this, him and his twin sister (who does not have Down syndrome) and big sister, age 9, were buzzing around me, fighting, arguing, trying to press the buttons, getting their heads in the way of my work, looking to see if far-away friends had messaged them, answering my questions, playing with toys, begging to go outside, putting on shoes without the socks and basically being nuisances to each other and to me. In a nutshell, that is a typical day for us.

This is a picture of him receiving a participation medial at a cheer competition for the Angels, which is this fabulous cheer team where kids with disabilities are paired with a teenage volunteer to learn tumbling and aerial routines that they perform locally. In this place, with these people, he shines. That look on his face of pure pride and confidence? That’s real, so incredibly real.

Cheer Medal

Cheer Medal, © Thoroughly Modern Messy

Some of his best friends are here, and every Friday we get to see them. He is especially fond of his volunteer, who is something of a big brother to him. What do you think about Angels, I asked him?

“Angels, my friends. I look and I wave. I wave to you! Then I get some ice cream.” Apparently he has not forgotten the one time after a competition when myself and some other parents went for ice cream with the kids.

“How did you feel when you got your medal?” I asked him.

“Happy….eeeee….that’s e in the middle?” He said.

“That’s not e, it’s a y,” piped in his twin sister with her usual exasperated authority. Day in the life? You betcha.

And next is a picture of all three at Christmas time (in case you didn’t notice the giant tree). I asked my son to look at the picture and tell me what he wanted to say about his family:

“I kiss Eva (big sister). I want to kiss Nino (that’s himself).” What else do you want to say?  “Computers. Dinosaur Say Goodnight and Dinosaur Is Feeling Sick (two of his favorite books to read on the computer).”  And? “I want to be Elsa and Eva can be Anna. Veronica (his twin) is Kristoff and Nino can be Elsa.” Frozen, if not his favorite movie, is the one he’s most obsessed with. He strongly identifies with Elsa and her unusual power.

What else can you say about your family?

“My sisters are nice to me.”

Do you fight with them sometimes?

“No.” (A total lie).

Do you like school?

“Yup.”

What do you like best about school?

“I learn about Greek and computers too.” They go to a partial Greek-immersion charter school and all of them, to my surprise and delight, love learning Greek.

I also gave his sisters a chance to say something about him. First, big sister: “He can sometimes be annoying but he’s also really cute and funny. Also, whenever I cry or get sick, he always gives me a hug. And he always makes everyone laugh with his violent banana jokes.”

For example:

Him: “Knock Knock”

Us: Who’s there?

Him: “Banana.”

Us: Banana Who?

Him: “Banana Scratch Your Eye Out!”

And his twin sister’s opinion:

“He can sometimes be annoying, but he’s loving and funny. LIke when I get hurt, he cares about me. He helps me not feel sad anymore. And he can sometimes be mean. But you don’t want to write that. But even though he is mean, I still love him. He’s still funny. ”

Three Musketeers, Christmas

Three Musketeers, Christmas, © Thoroughly Modern Messy

Another way to celebrate this day is to read this wonderful blog post by Kelle Hampton and consider donating to fund college scholarships for people with disabilities.

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

 

See below to view all the other entries in the blog hop!!!

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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……

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.

One, Two, Three…Uh-Oh

23 Mar

falling from the sky, originally uploaded by monstertje77.

Pssst. Listen. You hear that? No, not THAT. THAT is the sound of a mother going crazy. Behind that sound, another — the manic musicality of three young children vying for top billing. Take a closer listen:

“Mommy, I want milk.”
“I want milk too.”
“Mama!”
“Mommy, can you read this?”
“Hey, I wanted to read that. I had it first.”
“No, I had it first”
“Stop copying me!’
“Maaama!” (Whining now)
“I want to sit down.”
“I’m sitting here.”
“Mommy, she said I can’t sit there. Humph!”
“TV, TV!”
“Elmo!”

That is a typical one-minute snippet from my mornings with the three bears — a 5-year-old who goes to preschool in the afternoon and her 2-year-old twin siblings, a girl and a boy, who happens to have Down syndrome.

I never expected to have, or dreamed of having, three children. I had always planned on having two. I thought people who actually wanted more than that in this day and age were crazy. I had solid evidence to back this up, you see. Like the city editor at the newspaper where I used to work — he had two kids himself, but I’ll never forget the day he told me about his friend who had just added a third child to the tight quarters of their New York City apartment.

“You can have two kids in New York,” he recalled his friend saying, “and it’s still manageable. You can get dinner on the table, do bedtime at a reasonable hour, and have the house in relative order on most days.” But add a third kid, and that’s the tipping point. Forget about having dinner parties or even getting out of the house. “And it really was true for him,” my colleague said. “We went over their house after the third one came and it was a whole different world — kids running around uncontrollable, the house a mess, the parents exhausted.” I never forgot that, he said, smiling contentedly at the thought of his two neat little packages at home. I never forgot that either. It scared the living daylights out of me.

So you might imagine how I felt when we got the great surprise of twins with our second pregnancy. I still remember the first ultrasound at 7 weeks, when not one, but two little gummy-bear shaped creatures stared out from that screen. They seemed to be — waving? — and saying “Hey, Mom and Dad! Get ready for the ride of your life.” My OB helpfully informed me after the fact that sometimes older (ahem) mommies, those over the ripe old age of 35, release two eggs per cycle instead of one. Thank you, body, for the egg party.

In any case, we have what I fondly call a brood. And since it has happened to me I can say with firm conviction: broods are the best! Life feels filled up with three — more fun, more energy, more work but more rewards. As my friend Sara once said, having three makes your family feel complete.

When we had our first daughter, it was of course a huge life change, but with one I felt able to preserve a lot of my former self. With three, my old self is pretty much pulverized. And as messy as she is, I have to say I like the new me much better. She knows what’s important and what isn’t (most of the time). She’s not very put together, but she’s got an attitude, and some confidence for once — having cubs brings out the bear in you. Watch out!

And broods are such a great way to raise a special needs child. My son’s siblings have been his greatest teachers, his biggest fans, his worst influences. Now I understand something about the dynamic of big families that I didn’t before: having children can be slightly addictive. It’s not just the magic of the birth experience or those pudgy sausage-like baby arms and legs. It’s seeing your children together and realizing that happiness multiplies the more siblings are experiencing it at the same time. This is not to say that one child cannot be deliriously happy too. But there is something about kid energy that seeks its likeness, and it’s just convenient to have it in the same household. As for three kids being the tipping point where a light hold on sanity turns to madness, I think my co-worker’s friend was right about that. But hey, we’re in Charlotte now, which means we at least have more space in which to be insane.

From conversations I’ve had, it seems that parents who have a child with Down syndrome struggle a little bit more than average with the decision of whether to have another child, especially if their special child is the first or second. All sorts of questions and worries abound: Will we be able to handle another, emotionally and financially? What if we have another child with special needs? If the Down syndrome child is their first, they wonder what is better: to devote all their resources to this one child’s extra needs, or to give him or her a sibling who can inspire and push. And what of that sibling — when she grows up, will she carry the burden of looking after her special brother or sister alone? Maybe we should have a third, they think (and often do), so that won’t be an issue. All of these thoughts would have crossed my mind too if the solution had not been provided for us.

When the twins were first born, I couldn’t help thinking that it was our daughter who was meant to be sibling number two, the “typical” kid, the little sister for our first daughter. Our son was the special blessing, the extra challenge. But now that I know them, and myself, better, I think I see what really happened. It was our son who was supposed to be kid number two. But then some wiseacre of an angel elbowed God in the side and said “Are you sure you want to give that lady a special needs child? She’s a little cuckoo, right?” And God thought for a minute. “Yes, you’re right, ” he replied. “I’ll send along a little helper. She’ll be good for her brother, mostly, but she’ll also give her mother solace when she’s at an impasse with her son’s special needs. And best of all, she’ll keep her brother smelling like a rose. She’s quite the handful, and in comparison the boy will be the easy twin.”

So for everyone thinking about starting or expanding their family, I wish you nothing but the best. I hope the universe gives you the answer you want, or better yet, the one you didn’t expect that turns out to be just fabulous.

 

Footnote: Here is Anna Quindlen writing about raising her brood of three. It’s a great piece, republished by Lisa Belkin on her Motherlode blog over at The New York Times. Reading it was a great relief to me, because Anna Quindlen talks about how things just keep getting better as the years pass. She even loved the teenage years! Please take a minute to read the essay and page through the blog to hear what these eloquent mother-writers have to say.

 

The Little Girl Saves the Day

6 Dec

Holding Hands, originally uploaded by Julian Oliver.

There is a little girl who has taken upon her small shoulders the task of keeping her younger brother happy. She will run to comfort him when he cries and patiently explain to him how to feed himself with a spoon. When his mother is exasperated for lack of success, the little girl will succeed.

When her brother took some of his first steps, they were meant for her. The first person he looks for in the morning, after Mommy comes in to get him, is the little girl. She has always loved him with all her heart, and throughout the day will spontaneously run up to him and tell him he’s a “cutie cutie boy” or “the cutest baby in the world.” She says she wants to marry him when she grows up even though you’re not supposed to marry your brother.

This little girl, as you’ve probably guessed, is the big sister to our two-year-old twins. Her brother has Down syndrome and requires a coterie of four therapists (his girlfriends), who come to our house every week to help him learn to talk, use sign language, walk, develop social skills and improve the dexterity in his hands. His big sister is therapist number five. And what’s amazing about her is not that she wants to help teach him new signs or new words. Or that she brings him things that he needs, or feeds him his dinner, or gladly shares her Harris Teeter balloon after he pops his with his teeth.

It’s the pride she shows in his accomplishments. When he does something new, she is SO excited she cannot contain herself. The days when he first stood up by himself and tried to take a step, she said, in that funny high-pitched voice that adults use when talking to children, “I am SO proud of you! You stood up! Good job!” And then she immediately shared this news with me. And I find myself sharing news of his accomplishments with her first also. We often turn to each other to express our joy at an emerging new skill of his. She is 5, I might remind you. I am 39. The difference in wisdom between us is usually weighted in her favor. Her acceptance of him is total, cloaked in silent understanding.

I mention this by way of explaining why this school year has been an unexpected gift for us. The gift of her daily presence is one I almost missed, by my own doing no less. You see, we thought she might be in Kindergarten this year instead of home with me half the day and in preschool the other half.

She misses the public school cutoff for turning 5 by about a month and a half, but we went through this whole process to get her into Kindergarten early. Not because we thought she was a genius, but just because she seemed ready to make that step. Long boring story short, it didn’t work out because they thought she was too immature to start.

After a few days of feeling sort of turned upside down — we thought she’d be a shoo-in — we agreed that was totally, by far, the best thing ever. For one, it will delay what I am currently predicting will be the saddest day of my life, the day she goes off to college. Still, even though I eventually came around to the idea that the school was right, supremely right, I wanted to shout at them about that word — “immature.” This kid, immature? Perhaps a bit innocent and sensitive to be hanging out with children a year older than her, but not immature.

Just to be clear, I’m not proposing that she’s superhuman. She’s very much the typical 5-year-old. The other day, she looked flabbergasted when I told her to include her brother in the hide-and-seek game she was playing with her little sister. “But Mommy,” she said, “he doesn’t know how to play.” Ouch, that hurt a little. So I told her to do her best to include him.

In any case, the inevitable is often wearing different clothes than you thought it would. So it doesn’t really matter what that school thought, because the end result is that we are happier. The best has come to pass. We are together most days, the four of us, me and the three little headaches who are teaching me how to be a better…something.

One of our days entailed going to get a routine x-ray for her brother and then out to lunch. At the radiology center we pretty much took over half the waiting room, with kids climbing on and off all the chairs and throwing brochures on the floor. Big sis decided to take some brochures with her. She loves anything of the printed-word variety, much to my delight.

So at lunch I notice that she is copying words from one of the radiology brochures onto her paper menu. I’m so glad to see her practicing her letters! She goes about it diligently while the twins do their usual routine of screaming and babbling nonsense while licking everything they can get their mouths on. For good measure, my son throws everything gleefully to the ground until I turn his highchair into an island, at least two feet of empty air on every side of him. He still manages to bend over and lick the high chair bar. Anything I give him to chew or drink from he promptly pushes away or flings. Ahhhh!! I’m going to lose it. But finally, the food is here. Hallelujah!

As I busy myself with doling everything out, my oldest pushes her paper toward me.

“Mommy,” she says proudly, “look what I wrote!”

I look down at the carefully drawn crayon letters.

“Breast lumps,” it says, the “e” facing backward.

I can’t help it. I burst out laughing as I read the words aloud. Daughter giggles heartily upon hearing them. “This is what happens,” I say, the laughter rising even harder from my belly, “when we can’t read.”

The kid knows what breasts are — I nursed the twins for a short time — and I’m guessing she knows what lumps are but thankfully she didn’t ask for an explanation of breast + lumps. We just sat there laughing like both of us were 5, giggling with joy that the word “breasts” had been said in a public place. I had a smile on my face the rest of the day, happy that my beautiful daughter found a way to get a message to her harried mom. And the message was: relax, mama, life is funny, especially when you don’t expect it to be.