Happy Belated New Year!

Thank you for being a reader of Thoroughly Modern Messy and sharing our journey. If you are new to the site, welcome, and please come back and visit often! (You can click “Follow” in the bottom right corner so you don’t miss any posts — we’ve got some good ones in store).  Become a fan of the this blog on Facebook (look to the right) and you’ll learn about all kinds of interesting and fun things related to parenting in general and children with special needs.

Playing to Their Strengths: Teaching Children with Down Syndrome

Below is a short tutorial directed at my son’s teachers; a love letter of sorts, if you will. He is 3, and in a preschool for exceptional children within our local elementary school. I think these ideas apply broadly though, to all professionals and all parents whose children have Down syndrome or other cognitive disorders. I hope there are takeaways in here that apply to children of any age. Let me know what you think!

To My Son’s Teachers: Research-Based Strategies for Learning

Some notes from a conference presented in Charlotte, N.C., last fall by Down Syndrome Education International, a UK-based research and training organization that has been using clinical trials to study how people with Down syndrome learn for 30 years. Professor Sue Buckley is the lead scientist at DownsEd and was the featured speaker at the conference along with some of her colleagues. For more information: www.downsed.org.

Memory

You may have heard that children with Down syndrome are “visual learners,” meaning that they learn better when information is presented visually rather than just spoken to them. The reason for this is that they have specific impairments in their auditory short-term memory and relatively strong visual memories.

What this means is they may need visual prompts like pictures or signs in order to learn language, follow directions, or answer questions. For a one-step direction or word, no visual prompt may be needed, but if you are asking the child to complete a two-step direction or say two or more words, a visual aid may be necessary until the child has mastered this skill.

(Visual aides like pictures are also great for a child who has difficulty with transitions so he knows what to expect next.)

For instance, when trying to increase the length of your child’s spoken phrases, holding up a card with two dots (or three dots, etc., depending on the child’s level) and pointing to each dot as you say each word can help serve as a visual reminder to compensate for the child’s weaker auditory memory. This is known as a pacing board.  If your child looks at his toy and says “ball,” try to get him to add the color also by using a pacing board with two dots and saying “Ball. Red ball,” and pointing to each dot as you say “Red…ball.” For more information about this, please see the fascinating book by Libby Kumin, PhD., CCC-SLP, “Early Communication Skills for Children With Down Syndrome: A Guide for Parents and Professionals.”

Language Learning

About a half dozen studies have shown that reading progress is often above the mental age for language and verbal skills, and in many cases children with Down syndrome can read at age level! The researchers at DownsEd, as the organization is called, learned that many 3-year-olds could remember a visual word easier than a spoken word.

(Mathematical skills are more difficult, and often lag 2 years behind reading skills. More on that another time.)

Reading can be fostered in the classroom and at home with the use of letter cards or letter books — pages with a letter written in big type and accompanied by a picture of something that starts with that letter. Show the card, then say the letter sound to the child, then say the word and see if the child repeats it. Over time, you can ask the child to categorize by putting all the “b” words in one pile, the “d” words in another, etc.

Studies of children naming picture cards showed that speech production was clearer when imitating (watching closely as the adult spoke the word slowly). This showed that another problem was storage and retrieval from memory, not a motor skill or vocabulary issue, although some children with Down syndrome also have oral-motor weakness that impedes their speech.

Children with Down syndrome are good at matching games, so you could have a group of pictures with the word written underneath, and have the child match the corresponding picture with the word underneath. Over time, you can gradually progress to having the child match only a word to the correct picture, and then match word to word, with no pictures at all.

Once children with Down syndrome acquire a basic vocabulary through signs and spoken words, introducing the printed word will help them increase their vocabularies and also begin to learn grammar. In fact, once a child is putting 3 or 4 words together, reading will be the best way to learn grammar (for instance “Mommy is driving the car,” rather than “Mommy drive car.”)

Reading, Word Recognition

Preschool children can start whole word/sight reading when they have a vocabulary of 50-100 words and are able to match pictures (find the one the same) and select pictures (Where is the dog?).

Phonics instruction should not begin until the child has a sight vocabulary of 30-40 words, or with the rest of the class in school. Many of the early phonics skills will overlap with speech and language activities that teach letter sounds and initial consonants.

The computer plays to the visual strengths of children with Down syndrome, said Professor Buckley. She said the iPad is going to revolutionize education of our children. So please keep encouraging them to use the computer and don’t hesitate to play letter and number recognition games.

Errorless Learning

One fascinating tip presented at the conference is that children with Down syndrome are very sensitive to failure. If they sense they will not be able to do something correctly, they may simply refuse to do it. You may present a task to them, and they may start smiling at you or otherwise getting distracted. This may be just a behavior, but it may also be their way of trying to “get out of” doing the task.

A way around this is to use errorless learning. In other words, do not let the child get something “wrong.” Assist him in getting the answers right until he learns to do it himself. For instance, if you are asking the child to point to the dog and he points to the duck, keep prompting for the right answer. Avoid saying the word “no” or “that’s not right,” or similar language.

Instead, say something like, “That’s the duck, do you see the dog?” Prompt a few times and if the child doesn’t get it, take his finger and point to the dog, saying “There’s the dog!” Similarly, if you are asking the child to choose from among a group of cards and he is not finding the right one, gently push the correct one forward to encourage him to choose it. Praise him for making the correct choice and try another activity. Over time, you will slowly decrease the amount of support and prompts you are giving to the child.

  Ending on a High Note

Perhaps the most striking yet simple idea presented at the conference by Professor Buckley is that we all should treat our children according to their chronological age as much as possible, not their developmental age.

As an example, she told us about her own daughter, who is now an adult and has never had a strong spoken vocabulary. They always treated her very protectively, and she took a special bus to either school or day service until the age of 22. Around that age, she joined the “real world,” moving to a supported living situation and beginning a relationship with a young man.

Finally, she came into herself, Professor Buckley said. Her daughter learned more between the ages of 20 and 30 than in the previous 20 years, she said.

I love this story! Let’s all work for full inclusion for our children and have the ultimate goal of letting our adult children be adults when the time comes. I anticipate this will be harder than it sounds. Thank you for helping us get there!

Wish I May, Wish I Might

When you have a child with Down syndrome, you have lots of dreams and goals for your little one. Some of them are simple — or I should say, they sound simple to most people — dreaming of the day he will walk, or say your name, or sleep in a bed instead of a crib, or sit at a table in school and complete a project instead of abandoning it in frustration.

Our son is 3 now, and all of the mini-dreams I mentioned have come true for him. In each case, it was a time for much rejoicing and the marking of a true turning point in his life, and in ours. I often feel like special needs parents have been given a great gift, because we appreciate the simplest things so fully. These little victories come in brilliant starbursts, unexpected and awesome to behold.

Some dreams are vaster. When you are still at the beginning of your journey like my family is, these big dreams often seem as out of reach as the next galaxy. The wish for full inclusion in a regular classroom; for a college education, a driver’s license, a job and a life of his own, hopefully with a partner by his side.

I hold these big ideas for my son close to my heart. I do. Like any parent, I want them all. But if I had to paint a picture of my fondest wish for him, it would look like this:

It is raining, and the day is gray, but warm. There is a playing field with short green grass and a mist hovering close to the ground, giving everything an ethereal quality. A group of teenage boys have finished their pick-up game and are walking off the field, water dripping from their hair and their shorts, mud clinging to their soles of their shoes. They have played football, or soccer or baseball, or maybe they’ve just completed a run.

Despite the sogginess, they are not rushing, not desperate to get out of the rain. They embrace it, because they will soon be men and men do not trouble themselves over a little rain.

They have everything going for them, and people take notice of this because it shows in their eyes. They have found a place in this world and it is called self-assurance, tenuous though it is at this tender age. Here is their secret: they walk separately but together, a temporary tribe. Some of them have matching gaits, step by step, but they don’t notice that. Maybe they are laughing, but maybe they don’t look at each other at all. They don’t need to. They are friends.

Among this group is my son. Walking as tall as everyone else, smiling but quiet. Thinking, like everyone else, about his victories and mistakes on the field, and the pizza and soda that awaits. He doesn’t notice me, because I am not there. He doesn’t need me to shepherd his every move now. But when this happens, I will know it, somehow I will know about this eternally simple day that nonetheless shook the sky in my little corner of the world.

The door to our house will open, and he’ll say “Hey Mom, I’m home.” I’ll want to look slightly annoyed because he has forgotten to wipe his feet and now there is mud on the floor. But this time, I’ll probably let it go. And that night, I’ll stay up late imagining a new dream for us.

He Came Bearing Whimsy

In this season of tallying up, starting fresh and counting one’s blessings, I am grateful for many things: my loyal readers, a healthy family, a funny husband, loving parents and friends, a comfortable house and Carolina sunshine.

But in particular, I am also grateful for my son’s outlook on life. You see, he is a 3-year-old with Down syndrome, and among the many things this means is that he takes things literally and doesn’t interpret things the way the rest of us do, often to comic effect.

One recent ordinary Sunday, I was making lunch and our daughters — ages 6 and 3, our son’s twin — were coloring. Our son was flitting around from thing to thing as he is wont to do, and my husband was putting up shelving in the garage using a drill. From inside the house, the sound of the drill was amplified and each time it hit the wall, it made a high-pitched buzzing/trumpeting noise that sort of sounded like a large animal pushing against the wall, noisily wanting in.

To our son, who loves animals, this sounded exactly like an elephant. He animatedly made the sign for elephant and said “El-phant!” Each time the drill made the sound, he would run over and pull at me, saying “Mommy! El-phant!” I would smile sweetly and say “Yes, it sounds like an elephant, doesn’t it?” How cute, I thought.

But it didn’t stop there. Pretty soon, his excitement reached a fever pitch and he was standing on a chair, emphatically saying “EL-PHANT!” Not just once, but multiple times. And he was looking at the rest of us going blithely about our business, totally unenthused about the angry elephant sound. How boring were we, he seemed to be thinking, how unmovable. Humph, was his expression.

Well, enough of this elephant business, I thought. It’s time for lunch. “Go wash your hands,” I told my son, pointing to the bathroom, which was right on the other side of the wall from the elephant sound. “But…” the look on his face said, wordlessly, as his expression turned into a pitiful little pout. He pointed to the bathroom and said softly “El-phant?” Mommy, you seriously want me to go in there WITH THE ELEPHANT?

Boom, it finally hit thick-headed Mommy. He did not think it SOUNDED like an elephant. He thought it WAS an elephant! I nearly melted away at the comedy and pathos of that thought. Poor kid! No wonder he was looking at us like we had lost our minds. I laughed delightedly, we all did, as I explained what he was thinking and had my older daughter accompany him to the bathroom to show him there was no great beast waiting its turn at the sink. (“El-phant; all gone,” he said matter-of-factly.)

Then we all gladly took him into the garage to show him what was really making that noise. But he was not swayed. Every time the drill buzzed, he still said “El-phant!” Exclamation mark his.

And I felt slightly jealous. After all, wouldn’t a world where pachyderms stopped by for PB&J be infinitely more exciting than one where toddlers took naps while moms swept crumbs from the floor?

Trumpet Trumpet. Stomp Stomp.

Away She Goes

Now that I’ve had a little time to think about it, I’ve figured out what bothers me most about the First Day of School. It’s the doors. The doors to the classrooms. They are so narrow, and there are no windows on the walls either. You take your oldest child, whom you have raised for years in the cocoon of your home, and you walk her quickly to the door of an unfamiliar room — Kindergarten.

And then in she goes, whoosh. Into a void. Sucked from the wide world into this suddenly tiny room. She walks in ahead of you to greet her teachers, and you try to squeeze in, but you can’t because other children have come in right behind. So there you are in the hallway, craning and stretching your neck to see inside, desperate for a peek.

Finally you get a look, and you know you will have to say goodbye soon. But first, you want to see what she is doing, your child. But she isn’t doing anything. She just got there! She is trying to put away her lunch bag, or looking for someone to tell her what to do, or maybe sitting in a chair. Or simply walking silently in the opposite direction from you, and this is a weird feeling. Before this day, you knew almost exactly what she was going to do at any given minute, whether at home being Little Mommy to her younger brother with Down syndrome and his twin sister, or in preschool. From now on, eight hours of her day will be a Big Mystery.

Sure, they’ll eventually send home a schedule and there will be curriculum nights where you can find out more about how and what they are learning.But because the day is so long and so full, you cannot possibly keep a grasp on what has gone on in each class, every day. Not that you need to. No one needs to, but you want to, you really really want to know. Because you’re the parent and you know exactly how she likes her oatmeal and which teddy bear she keeps closest to her pillow and what shape the constellation of bruises makes on her right knee. But this school thing is much more her business than yours.

Though you know you will be an involved parent and will visit the classroom and keep up with assignments and field trips, this does not change the fact that those doors and those walls divulge no information at the very moment you crave it most.

The First Day is about to begin, and the seconds until your departure are ticking by. You still can’t really see anything because other small bodies and big backpacks keep getting in the way. A zillion questions run through your mind. Is she happy? Is her hair getting in her eyes again? Will she be shy or friendly today? Will she choose puzzles or blocks? None of this matters a whit, yet the answers to these questions seem the most crucial of your life, simply because they are so impossible to obtain.

And then you leave. End of story. No fireworks, no confetti, no gong to mark the transition. (I’m dating myself, but remember the Gong Show? They knew how to send someone packing with style.) There is no warm, matronly woman handing you sympathy tissues — or, more my style, sympathy coffee and pastries — and saying with great enthusiasm “Thank you for leaving your beautiful, amazing and sometimes enervating child with us for the next 12 years!” No one pats you on the back. They are all too busy. As they should be. But still.

As Peggy Lee sang, Is that all there is? All the getting her excited for school, reading lots of books, buying new clothes, ceaselessly hunting for bags full of supplies, packing the lunch with care, waking up in the dark, actually making it out of the house on time — ends with a quick kiss good bye in a room full of strangers. Have a nice day, dear.

Don’t get me wrong, I’m THRILLED that she handled it well, that she was happy to be there even if she looked a little stunned. But I guess I thought there would be more pageantry about the whole thing. It just seemed too much like the rest of life — all business, no magic. And everything important associated with our precious ones is supposed to be magic, right? Right?

Yet I know the magic is there, past those walls you can’t see through and those doors you can barely fit into. Behind those blockades, all kinds of secret things happen that parents mustn’t witness. If they did, they might disrupt the alchemy that turns a little 5-year-old into a confident schoolgirl, possessed with the golden knowledge that she can indeed do great things.

A Special Homecoming Awaits

A while back I posted about the Maddex family, who are active in the Down syndrome community here in Charlotte and are in the process of adopting a boy with Down syndrome from the Ukraine, their fourth child (and second with Down syndrome). Well, they have made it to the grand finale in their adoption journey, and have been in the Ukraine for about two weeks, since early August 2011, visiting with Danil, or as his family and caregivers call him, Danila. He is so so sweet and their story just gets better every day. Please take a moment to read about their journey at www.addingtothemaddness.blogspot.com.

I know I am late to the party in terms of posting about this, but try to read from the beginning. There are a whirlwind of emotions involved on all sides, and some great tales to be told. It is very engaging reading, whether you have kids or not. So stop Twittering your  life away and read it — fascinating stuff!

Up, Down and All Around

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!

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.

What’s So Hard About That?

Sometimes having a child with special needs means doing things the hard way. By that I mean the painstaking way.

Our son with Down syndrome is two and a half, and I don’t bring the stroller anymore when we leave the house. I stopped probably right when he began learning to walk, shortly after his second birthday. Why is this hard, you ask? If you have to ask, you have never had the pleasure of looking after a crazed toddler. Or in my case, two crazed toddlers. My son has a twin sister, who does not have Down syndrome but does have a great propensity for throwing her body around in dangerous ways and running without caring what she runs into. I loved the time when I could strap them both securely in their twin stroller. Even then, I knew our days with it were numbered. Oh, Inglesina Twin Swift, we hardly knew ye.

I want our son to have as much practice walking, holding hands and following directions as possible. And the only way to do this is to not bring the stroller. Plus, it’s obviously good exercise for both twins. I’ve gotten used to not having it, but sometimes I question my sanity. Like the time I had to bring all three kids to the shoe store to get measured for new shoes. Did I forget to mention the twins have a 5-year-old big sister? At least that child is cautious by nature and usually listens in public.

Right after I finished explaining how we all had to stay together, they ran in three different directions. Big sis oohed and ahhed over the rainbow light-up sneakers that look as though a unicorn threw up on them; little sis got busy trying on all the display models and saying “I want THIS one!” And dear boy started taking down all the price stickers and playing with the high heels. (I’d bet he’d make a cute future drag queen.)

Another mother walked by, very empathetic woman, and said I was brave not to bring the stroller. More often than not, “brave” is a euphemism for “out of your mind.” She left not only the stroller but her actual kids at home. She said she makes two trips, one to measure their feet, and another, without them, to pick out the shoes. Smart lady.

Now, if we were still in New York City, I’d have to have the stroller with me, because traffic and subways and overly caffeinated New Yorkers do not mix well with misbehaving little leprechauns. A father recently wrote a smart ode to strollers for The New York Times, and I wholeheartedly agree with everything he said; I love immobilizing ornery toddlers. (Read the full piece here).

The lack of stroller is only one thing that we do the hard way. It is starting to finally dawn on me that when it comes to toddlers, there are no shortcuts to teaching and discipline, double that for a toddler with special needs. For instance, when it is time for our son to clean up a toy he has pulled out — which, due to his attention span is roughly 1.9 minutes after he has pulled out said toy — he would rather run around the house licking everything than listen to an adult telling him what to do. Oh I’ve tried cajoling and demonstrating and punishing and giving time outs and repeating and repeating the request to clean up and refocusing him. But about the only thing that has a shot at working is to make a song out of it. So here’s me, a very disgruntled Mary Poppins, giving it my best shot:

(Hum to the tune of “Clean up the House,” from “Bear in the Big Blue House,” number 14 at this link right here):

“Clean up the blocks, clean up the blocks, ev-ree-bod-dee clean up the blocks. Let’s clean up the blocks, let’s clean up the BLOCKS, please would you JUST CLEAN UP THE BLOCKS. Let’s do it right now, let’s clean up the blocks, oh-my-good-ness clean UP those gosh-darn blocks.”

By this point my blood is about to boil over from being so darn fake-cheery. But every once in a great while, the singing works and my son looks at me like a switch just clicked in his brain. He smiles, and starts cleaning up, his sisters usually pitching it to help if they’re not busy making each other cry in frustration.

It’s hard enough to teach a typical toddler to clean up, but that much more so when your toddler has sensory issues to boot. Meaning that his desire to run around and lick and/or touch everything is due to a neurological need for input into his sensory system, a situation common in children with Down syndrome and low muscle tone. We’re working on that, having recently focused more attention on figuring out how to meet some of these needs with activities like heavy lifting, wearing a backpack, jumping on a trampoline or swinging on our swing. We also recently added a behavioral therapist to our repertoire, and we really like her.

She is attempting to teach me more things that must be done the hard way. I told her I’d prefer the “magic wand” package, where you just say or do the exact right thing and children listen immediately. Isn’t there something like that? Maybe in the bottom of your bag? Look again, please. No, no there isn’t, I’m afraid.

 

It’s nice to know that some labor-intensive things will pay off — for instance, she suggested spending just 10 minutes a day with each child separately playing on the floor so they can get the attention they crave, which over time will build a better relationship and make discipline easier. I love that suggestion.

But it would be great to have something to quickly extinguish some of the extremely undesirable repeat behaviors. For instance, are those of you without children aware that some little kids enjoy LICKING SHOES?? Especially dirty ones. And not just one time, but EVERY TIME THEY GET THE CHANCE! I’m talking the soles of the shoes, people, things that are dirtier than even your toilet seat is after chili night. These two twins will put the most disgusting things in their mouths, especially our curious son.

Ah well, at least we have a bigger house now that we live in the suburbs, and that means more room to play with appropriate toys and not dig around in dirty corners, which would have been more abundant, and dirtier, had we stayed in New York. I miss the culture of the big city and its myriad pockets of creative weirdness, but I have to say this is a nice place to do things the hard way.

Fields of Dreams

I came across this amazing headline online the other day:

“Down syndrome football player scores touchdown in Washington game.”

Wow! Was all I could think.  That is truly news. I have to read that story and watch the video. But it wasn’t exactly what I thought.

It’s still lovely and amazing, but….for me it raised so many interesting questions, none of which I really have the answers for. You can, and should, read the whole story from Yahoo! Sports here.

It wasn’t a real touchdown. Players from the young man’s high school varsity team, as well as the opposing team, put on a show so he would feel like he had achieved a touchdown. The opposing players pretended to try and tackle him. Players from his school’s team ran beside him to ensure he got to the right place. It’s all so incredibly sweet and uplifting — you can see that his teammates genuinely feel proud of him and happy for him, and he himself is over the moon with excitement. So why did I feel let down?

The simple answer is that I was directed to the story by way of an article on Yahoo! News about an autistic high school track star, one of the top long-distance runners in the Ottowa region. Within that Yahoo! article was a sentence about how other athletes with  developmental disabilities had recently risen to “inspire others with momentous touchdowns.” So I assumed that like the autistic athlete, these other athletes had achieved success on their own.

I was wrong, and I though I don’t appreciate the well-intentioned but misleading wording, I don’t mean this post to be a media critique. Something else about the young man’s experience on the football field caught my attention.

It seemed another example of what often bothers me about how the world views people with Down syndrome, like my son, who is 2. They are genuinely sympathetic, at least decent people are, and glad to assist and root for someone who has a disability that is usually obvious. But at the heart of that sympathy often lies a truth that is hard to take when you are on the other side: I should be nice to this person because he is weaker than me and by helping him I am truly doing a good deed. Much like a mother views her young child: precious but just about unable to function in the world without her.

People often get these puppy dog eyes when I talk about my son, like “Oh, how sweet; poor thing.” And I know they intend no harm. I mean, let’s face it, in a world as cruel as ours can be, these people are the good guys!!

But inside I’m saying “My son doesn’t need your sympathy! Your understanding, yes, your interest and curiosity, sure! But please don’t feel sorry for him, or me.” He has done things in his short time on earth that some people reach adulthood without doing. He rides horses. He can do a somersault. He has flown on a plane, more than once. He has been on a boat, on a subway, on amusement rides. He has been a lion for Halloween and roared at the sight of his costume. He has shown love for animals, bugs, babies and his sisters.

So when I hear a story like the one about that football player, my feelings get complicated. The primal parent in me feels slighted, and wants to think that my son will be different. That he will be able to achieve HIS goals without too many compromises. That somehow, we’ll find a way that he never has to rack up a pretend anything. If that means putting him in a few programs just for kids with special needs, so be it.

Then the journalist in me tries to analyze it objectively. For one thing, it should be noted that I know nothing about football, except that if played “for real,” it can be dangerous for children with Down syndrome because their ligaments are looser and neck muscles often weaker, and this can make spinal injuries more likely. But I do know that most parents of children with Down syndrome want their children to be part of inclusive environments, which means playing and learning alongside children of all types, especially typical children without special needs.

And this football experience was about as inclusive as it gets. The 17-year-old athlete with Down syndrome had attended all the junior-varsity team practices for three years, and was given the chance to make a run into the end zone at the close of each varsity practice. So he definitely trained for his moment in the sun.

This young man’s family probably could not have been more thrilled. Here was a kid who became enamored of football because his two older brothers played and he wanted to be like them. I have no idea if he knew that things were being modified so he could score a touchdown. Maybe he did, but was ecstatic anyway.

This story makes me realize that I am right in thinking hard about what inclusion really means. Is true inclusion achieving goals on a level playing field, meeting the same challenges as everyone else? Does it count if the child FEELS totally included but isn’t? Does it count if the child has to have everything tailored to him? What is my ultimate goal for my son — simple happiness or the traditional markers of success, like victory in a sport, a driver’s license, a college education? To borrow from the women’s movement, can’t he have it all?

Part of what bothers me about the football story is its presentation. I’m sure the sporting blog that published the piece had the best intentions, and indeed the fact that the editor cares enough to write good stories about athletes with disabilities is a great thing. But it’s that headline: “Scores Touchdown.” Maybe if it simply said “Realizes Dream,” I would have been content. (As a former headline writer myself, perhaps I am just being overly critical.) To me, though, proper use of language when talking about people with special needs makes the difference between sympathy and respect.

When you feel sympathy for someone, you are willing to airbrush the truth to make them feel better. When you have respect for someone, you trust that they can handle reality. Maybe you soften things a little, but you don’t pretend.

I have no idea what the future has in store. And I have no real idea what to think about fake touchdowns. When my son is a teenager, I would probably feel like the luckiest parent alive if my community would work together like these two football teams did to help my son realize a dream.

I do know that my son will always need caring, understanding people around him as he grows. This young football player is blessed to have that. Isn’t that enough?

I would love to know what you think, whether you be a parent, loved one or educator of someone with special needs, or just a curious reader. Please write and let me know. Leave a comment or email me at vilavicki@ymail.com.

Check Out My New Page!

I’ve added a new page to the Modern Messy blog. Called “Danil’s Page,” it is helping to spread the word about a family here in Charlotte who have a son with Down syndrome and are adopting another, Danil, from the Ukraine. He’s really cute and their cause is a very worthy one.

Love that face!

I will do my Messy best to keep the page updated with the latest developments. Check it out!