Archive | Inclusion RSS feed for this section

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!!!

Powered by Linky Tools

Click here to enter your link and view this Linky Tools list…

Advertisements

On World Down Syndrome Day, Three Truths

21 Mar

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

FACT: Understanding comes in small moments. Pay attention.

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

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

FALLACY: People with Down syndrome are not smart.

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

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

PHOTO: Schoolboy, 2012

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

Schoolboy

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

Playing to Their Strengths: Teaching Children with Down Syndrome

19 Feb

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

25 Jan

may 13 - evidence

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.