Tuesday, March 31, 2015

Every child illuminates the world in his own way

Every child is unique. Essentially, people know that. But welcoming those unique traits when they belong to a kid with special needs is sometimes a whole other matter. Too often, kids and adults don't realize just how amazing "different" can be. Which is why it was heartening to sit in a room with hundreds of people the other night and applaud those differences, especially since Max (in his full Fireman Max glory) was in a video that opened the evening. There he is the big screen, above, with two volunteers including the very adoring June on the right.

Max has been a part of The Friendship Circle since he was a little guy. This nonprofit offer programs for kids with special needs, as well as Friends at Home in which teen volunteers visit. What can you say about a group whose motto is "Do Amazing Things"? Exactly. They believe in our children. Sunday night's banquet was to honor people who've made significant contributions to The Friendship Circle, and to raise excitement and funding for the building of a new Lifetown. The original, which exists in West Bloomfield, Michigan, has a Life Village where kids can practice skills for the real world in authentic settings, including going to the dentist and doctor, buying tickets at a movie theater and even navigating traffic signals.

"Every person has their G-d-given talents," Executive Director Rabbi Zalman Grossbaum told the crowd. Every person, he said, illuminates the world in their own way. My heart beamed as I heard the words. And ached a little, too. Because if only more people saw our children that way, life wouldn't be such an uphill for them—or parents like us who are paving (and on occasion bulldozing) a road for them to travel on. Oh, there are so many ways to embrace the uniqueness of a kid with special needs, none of which involve much effort or understanding of any magnitude. Really, it's mostly common sense.

It starts with not feeling flustered or pity-flooded by the wheelchair, the walker, the atypical speech, the flapping, the [fill in the blank]. To the child in front of your eyes, his special needs are an organic part of who he is. He doesn't sit around feeling sorry for himself. In fact, if you ask Max if he has cerebral palsy, he'll readily say "Yes!" and then he'll want to know what you have. 

Once you can get past the pity and see the actual child in front of your eyes, the not-big secret is this: Follow the lead of the kid you're interacting with. You know, as you would with any kid. Say "hello." Make small talk. Tell about yourself. Joke. Ask questions, simple ones requiring only a "yes" or "no" answer if necessary. If a child isn't comfortable with eye contact, don't make eye contact. If a child seems adverse to touch, hands off. When in doubt, ask the parent about what to do.

Teach your children to do the same, ideally discussions you have at home so that when they do meet a kid with special needs, they are not unsure or unnerved. Make it an ongoing conversation, same as you discuss race, sharing your toys, treating others well or any number of chats you have with kids over the years with the goal of raising Good People. Happy beginnings like this one, in which a little girl approaches a boy with autism at a pool and plays with him, are all too rare.

That's for starters. Because then, hopefully, you—and your kids—try to get to know this child you see in the park, at the playground, at parties or in school. And you realize this kid has a great sense of humor. Or he's really smart. Or he's amazingly cheerful, because that's his natural disposition. Or he's very knowledgeable about, say, fire trucks or Minecraft or Lego or street lamps or the galaxy or whatever. Or he loves to sing and dance in his own way, because hey, every kid does that stuff in his own way and it's fascinating to hear and watch the variety that is child-kind.

And you get to know the kid. And you see that he's unique not because he's got a disability but because, like every child, he brings something unique—a whole bunch of unique things, in fact—to this world.

Monday, March 30, 2015

Why shouldn't students with special needs earn varsity letters?

It seems like it ought to be a given: Athletes with special needs should have the same chance to earn school varsity letters as other athletes, celebrating their own unique achievements. If a school doesn't allow that, it's discriminatory. Yet that's exactly what's been going on at East High in Wichita, Kansas, as the world discovered last week when the story of Michael Kelley—a teen with Down syndrome and autism—went viral. Today, a classmate will be presenting her Change.org petition at a Board of Ed meeting, it's already racked up close to 43,000 signatures in support of allowing students with special needs to earn varsity letters.

Michael participates in an extra-curricular basketball team for kids with special needs, reported ksn.com. To encourage her son his mom, Jolinda, bought him an East High varsity jacket and official letter. Only it seems another parent wasn't pleased that Michael was wearing that jacket. While at school, Michael was told to remove it and gave him a sweatshirt to wear instead.

How mortifying that must have been for Michael, for starters. Couldn't they have just waited till the end of the school day, if they had to ask him to remove it at all?

According to East High Principal Ken Thiessen, the school was following policy: Only athletes on varsity teams can wear a varsity letter. When asked by a reporter if the school would ever consider giving kids with special needs a varsity letter, he said, "We have considered it, and our decision was no. We decided that it is not appropriate in our situation because it is not a varsity level competition."

For sure, the students in the special needs athletic programming aren't competing at the standard "varsity level." But there is no comparison. They are competing at their level. The school should establish requirements for students with special needs to earn varsity letters. This isn't about giving these teens a free pass—it's giving them the recognition they deserve.

There's no district policy on this in Wichita. In fact, the district Athletic Director noted that when he worked for another high school, they did allow students with special needs to earn letters.

Of course, this raises big questions about what's going on at schools across the country, where I'll bet situations are similar to this one: It depends on the individual school policy. Happily, a growing number of schools now have sports programs for kids with special needs, thanks in part to efforts by nonprofits like Special Olympics Project UNIFY. Whether or not these athletes are treated as equals is a whole other question. Really, one our kids have to contend with in every facet of their lives.

Why there's even a question about this is mind-boggling, like the one posted on the Facebook page of this Kansas City TV station: "Do you think special needs athletes should be eligible for varsity letters?" Why not? Assuming they meet the established criteria for getting a letter, they have every right to that honor.

Libby Hastings, the classmate of Michael's who started the change.org petition, summed it up best when she wrote, "My passion is soccer and I wear my varsity letter with pride. It's a symbol of all my hard work and the love I have for my school.... Michael works just as hard as I do, shows just as much passion, and loves our school deeply. He deserves to be awarded a varsity letter just as much I do."

Meanwhile, the principal and athletic director of nearby Santana High School, Mark Calvin, sent Michael an official varsity letter along with a note: "You can be a part of something anywhere you want to."

If only.

Also see:
8 ways to include kids with special needs in sports and other activities

Image: ksn.com video

Friday, March 27, 2015

The Special Needs Blogger Weekend Link-up: Share your best

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Win an awesome new mobility device for kids: the Scoot

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, March 26, 2015

There is no Wikipedia page to explain God's plan

In the days since seven children from a Brooklyn, New York, family perished in a home fire caused by a faulty hot plate, like many people, I have not stopped thinking about them, their parents or the surviving daughter, Tzipora. The faces of those beautiful children are in my head and in my heart. I say prayers, asking God to give the Sassoons strength—even as I ruminate over God's intent.

Tragedies are always hard to comprehend, but this one is as unfathomable as it is horrific. Seven children, ages 5 to 16, gone. The father, Gabriel Sassoon, has shown unbelievable endurance, flying to Israel for the burial of his children and speaking at their funeral. He later told an Israeli TV station that he didn't know for what the death of his children were a "kapara" (an atonement) for, but that one day he would find out and rejoice. As he noted at the funeral, "We cannot understand the master plan."

I know that. And yet, I can't stop thinking about why this could have happened. It's human nature to want to make sense of the most seemingly senseless incident. As a creature of modern day life, you somehow think there is an answer out there, given all the knowledge at our fingertips. You want the Google search results, the Wikipedia page, the PowerPoint presentation to explain it.

As I cast around online, I found an excerpt from When Bad Things Happen To Good People, the bestseller by conservative rabbi Harold Kushner. His son, Aaron, died at 14 from progeria. In the book, Kushner writes of a God limited in his ability to control the random hazards of life. As he notes about misfortunes,

Some are caused by bad luck, some are caused by bad people and some are simply an inevitable consequence of our being human and being mortal, living in a world of inflexible natural laws…. We can turn to Him for help in overcoming [tragedy], precisely because we can tell ourselves that God is as outraged by it as we are…. 

This didn't speak to me. While I am not Orthodox, I believe in an omnipotent God. I kept searching for meaning. The mom, Gayle Sassoon, went to my high school and was in my sister's class, and I've become part of a private Facebook group that shares information.

I found out that in my old high school, students have created a memorial, posting pledges they have taken to improve the world and their behaviors, including doing more mitzvot (good deeds). People around the world are also doing mitzvot in honor of the Sassoon children. There will be more good in our universe. Is that why this happened?

No. Seven children could not have died for that. 

At the eulogy, Gabriel Sassoon told the gathered crowds, "Please, everybody, love your child, love your children, love others' children. That's all that counts." Like many parents, I'm sure, I have given my children extra hugs and kisses since the fire, tip-toeing into their rooms at night to gaze at them and feel grateful that they are there and safe and still mine. At the site Matzav, a woman commented that—keeping in mind the father's urging to love our children—she was taking it upon herself "to keep my smartphone in my pocket when playing and spending time with the kids, giving them the undivided attention they need and deserve." People will lavish even more love and focus on their children in the wake of this tragedy. Is that why it happened?

No. Seven children could not have died for that.

At a press conference Monday night, Borough President Eric Adams spoke about the need for re-educating New Yorkers on fire safety. On Tuesday, there was a community fire safety training and free smoke detector giveaway in Brooklyn. Other lives will now be spared. Is that why this happened?

No. Seven children could not have died for that. 

The family has requested that donations go to the Sassoon Children Memorial Fund, and will be used for educational scholarships for those in need. Students will have opportunities that they didn't before. Is that why this happened?

No. Seven children could not have died for that.

Individually or in sum, the above did not add up to any sense. There were no answers, of course. The most meaningful message I found lay in this piece on Chabad.org, written by a rabbi:

You are bothered by the fact that people suffer undeservedly. As you should be. Any person with an ounce of moral sensitivity is outraged by the injustices of our world…. But what if we found the answer? What if someone came along and gave us a satisfying explanation? What if the mystery were finally solved? What if we asked why, and actually got an answer? If this ultimate question were answered, then we would be able to make peace with the suffering of innocents. And that is unthinkable. Worse than innocent people suffering is others watching their suffering unmoved. And that's exactly what would happen if we were to understand why innocents suffer. We would no longer be bothered by their cry, we would no longer feel their pain, because we would understand why it is happening.

Gabriel Sassoon has asked for people to pray for his wife and his daughter. This, we are doing. A sister-in-law of Gayle's put up a post on Facebook noting that Gayle regularly had her children say berachot (blessings) out loud. Many times, she would add the name of someone deceased and ask G-d to elevate their soul. She wrote, "Let's have the names of these precious souls in our minds when we say our berachot, and let's try to say berachot out loud." That, too, we can do.








Wednesday, March 25, 2015

What this teen with cerebral palsy did to fix a bad situation is genius

Archer Hadley had a problem with his high school: It wasn't accessible to him. The 18-year-old, who has cerebral palsy and attends Austin High School in Austin, TX, couldn't yank open the front doors from his wheelchair. Foul weather made the situation particularly miserable. This is his story, told in a mini documentary, one of 15 recently honored at The 2015 White House Student Film Festival. This year's theme: The impact of giving back.

So here's what struck me about this story, particularly today on National Cerebral Palsy Awareness Day. Archer and his parents could likely have sued the school to make it more accessible. Per the Americans with Disabilities Act, last revised in 2010, school buildings must be designed to provide students and staff with disabilities an equal opportunity to benefit from services; exclusionary design is prohibited. Buildings constructed prior to the ADA (1990) are not exempt, and school districts are supposed to retrofit facilities. That said, districts are not required to take action that could result in undue financial and administrative burdens.

So there's that. And then there's the let's-do-this spirit that Archer had, raising the $5000-plus needed to install each automatic doorway—and enabling his classmates to ride a mile in his shoes.

As I've learned from raising Max, having cerebral palsy regularly means figuring out alterna-ways of doing things: holding a spoon, holding a crayon, brushing teeth, pulling up pants, going up and down stairs, pushing a button, even just getting into bed. Often, therapists have shown Max adaptive techniques. Sometimes, Max just figures it out, knuckling an overly firm button in an elevator or doing a little wiggle dance to manipulate his pants. This is not surprising to me—it's a basic human drive to work around challenges—but as his mom, it's plenty awesome to see.

Archer Hadley also figured out another path, raising both money and awareness. Props to him for showing everyone the way.

Image: Screen grab, The Archer Hadley Story

Tuesday, March 24, 2015

The trouble with social media birthday celebrations for kids with special needs

Yesterday, I read yet another story about social media coming to the aid of a kid with special needs who needed birthday love.

Odin Camus, 13, of Ontario, Canada, has Asperger's. He sent out about 15 invites for his birthday party on Friday, but none of the kids responded, per his mother, Melissa. So she went online to a local community group and wrote, reports CTV News, "I want his thirteenth birthday to feel special and like people care about him. I'm really struggling with finding a way to make today awesome for him, when it will just be us celebrating." She asked people to text his cell phone and wish him a Happy Birthday, and said she'd be open to other suggestions. People suggested she host a public event and invite people. So she planned a bowling night and opened the event to anyone who wished to attend.

Hundreds of people showed up, many of them strangers, bearing cards, balloons and gifts for Odin. The seventh grader got some 4000 text messages, along with many Happy Birthday messages on Facebook. The tag #odinbirthday was the top Twitter trend in Canada Friday night, and a whole lot of tweets poured in including ones from Canadian Liberal Party leader Justin Trudeau and Carrie Underwood.

Odin was gleeful. So was his mom. "Honestly, Odin and I have been pretty much crying all day," she told The Peterborough Examiner. "People are here because everyone knows a kid who struggles to fit in." She hoped what happened told the world, "You don't have to be bummed out—no matter how down you feel, there's always someone there. Always."

These days, a growing number of parents are putting up requests on Facebook for people to extend birthday wishes to their kids with special needs. Chad, a 9-year-old with autism in Frisco, Texas, ended up getting cards and packages from around the world after his Dad asked Facebook friends to make his son's birthday memorable. Last year, the Facebook page a Michigan mom created in honor of her son Colin's 11th birthday—a boy who, she noted, eats lunch alone at school daily and has a disorder similar to Asperger's—racked up millions of followers and good wishes.

These stories warm the hearts of many, to be sure. I'd like to say these stories warm my heart, too, except there's one thing nagging at me: What about the rest of the year? What changes for these children when the crowds go away? What difference does this make for them in their usual life, in which isolation is the norm?

Over on Colin's Friends page, he and his mom now do videos answering questions from people and raise awareness about autism and differences, a Good Thing. He's participated in an anti-bullying campaign and gotten to hang with cool people, including the Harlem Globetrotters. I can only imagine how exciting this has been for him. But when I scanned posts and photos from the past year on the Facebook page, I didn't see any that indicated much has changed for him socially off-screen. And that bummed me out.

I am not saying these children don't deserve the outpouring of support and good wishes—of course they do. But it's Facebook and Twitter, not the real world. What I'm saying is, these kids deserve so much more.

As happymaking as it may for a child to see all the "likes" and to have a blowout birthday party with hordes of people, what would make the most difference for kids like Odin, Colin and Chad are for other kids to get to know them offline. For other parents to reach out to the parents of kids with special needs and make playdates and hangouts. For other parents to make sure these kids are invited to their children's birthday parties. And, of course, for parents to make sure their children RSVP to the birthday party of a kid with autism or other special needs.

Stories like these give a false impression of a happy ending to the masses. Birthdays happen one day annually; life is meant to be lived 365 days a year. The greatest gift people can give to a kid or teen with special needs isn't birthday cards, birthday presents or social media birthday wishes. It's true inclusion. 

Image source: Twitter/@Cwalker1015

Monday, March 23, 2015

Those times when your special needs mom patience runs out

It was just four words—Frozen Fever, Take Two?—the title of the article Max had chosen for his weekly current events. He needed to type them into his speech app for his class presentation. But, no. It wasn't happening.

As a special needs parent, you tend to develop super-human patience. Really, what choice do you have? Our kids are on their own timelines for development. You can't make them walk, talk, use their hands, gain cognition or do any number of other things any sooner than they themselves are ready to (if they, in fact, have it in them), no matter how much therapy they get.  So even as you ache for them to just do it, you hold back your hopes and wait it out.

Then there's the daily patience you develop. So much can take longer: eating, bathing, dressing, getting out the door to go somewhere, making crafts, exploring a museum, understanding schoolwork. If your child happens to have certain, er, interests (read: obsessions), then wow, does your patience go into overdrive. I have developed an amazing tolerance for listening to fire truck videos on YouTube (my brother-in-law recently expressed hope that maybe Max's next obsession will be something a little quieter—say, monarch butterflies).

So there we were doing Max's weekly current events. I left Max to type in the name of the article (part one of the assignment), and went off to brush my teeth. When I returned five minutes later, he was still sitting in front of a black screen.

Max's mind tends to work the way an iPhone or Mac does when it's "thinking." Like that little whirring wheel, his brain sometimes takes time to process information. But typing the title of an article isn't typically challenging for him—he just needed to focus.

"Max, please, type in the name of the article!" I said.

He stared blankly at the screen. He stared at me.

"Max, I'm going to leave again and when I come back, the title should be there," I said. I didn't want him to feel pressured by my presence. When I walked in a few minutes later, though, he still hadn't typed it. He just looked at me.

I felt the patience seeping out.

"Max, if you don't type the title, we can't finish your current events," I said.

He gestured at me. As in, you do it.

"Nope," I said. "It's your homework. You have to do it."

He stared at the screen some more. My last bit of patience left me. What in the world was up? Why was he not doing this? What was so difficult?

Really, it wasn't just the title. It was everything, one of those times when I wished that stuff didn't have to be so hard. I had a lot more of these moments when Max was a tot, but sometimes, they still hit. There's no "easy" button when you're the parent of a kid with special needs.

"Max!" I said, more sharply than I would have liked. "Type. The. Title!"

Well, that startled him into action. He typed one letter and looked at me.

"Good!" I said. "Finish up!"

Slowly but surely, he pecked out the rest of the title. It took him maybe 30 seconds once he got going.

I sighed a deep sigh. Max gave me a "What's wrong with you?" look. And then, we could at last get started on explaining the article, which he more or less did without drama.

File under: "only human."

Friday, March 20, 2015

The Special Needs Blogger Weekend Link-up: Share the love

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Win an awesome new mobility device for kids: the Scoot

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, March 19, 2015

What I wish others understood about my son with Down syndrome

This guest post is by Kari Wagner-Peck, author of the blog A Typical Son. She is mom to Thorin, an 8-year-old with Down syndrome. You might know her as the blogger who got the New York Times' Ethicist columnist Chuck Klosterman to apologize for his use of the word "retard."

This post is in support of World Down Syndrome Day on March 21, which is a day of global awareness of people with Down syndrome. While I believe awareness is necessary, I think acceptance and inclusion are vital. What gets in the way of that happening is often true ignorance about children with disabilities, along with misplaced pity and fear. This is my wish list of understanding that would make a difference in my son's life.

My Son is a Multi-faceted Child

The two most common descriptors of children with Down syndrome I hear are "happy" and "stubborn." Sure, my son can be both of these as I can and really every human being on earth. I don’t find him to be more of those things over anything else.

If anything his humor—albeit child-like and boy-centric—is the hallmark of his personality. He’s eight so I will cut him some slack. He likes to walk around the house strumming his ukulele and composing songs organically. His most recent composition was titled "Everybody Farts." The lyrics were an enumeration of everyone by name or title who farted: Mommy farts, daddy farts, Coco farts, etc. Did I wish he would have stopped singing it when the landlord came over to check on a leak? Yes, I did desperately wish that to no avail. Was I eternally grateful he did not incorporate the line "The landlord farts"? Yes, I was.

He is curious and bright. This year we began homeschool. He has surpassed even my elevated assumptions about what he was capable of. My son is reading, learning math, handwriting, spelling and all the things other children learn.

He is a gifted photographer but like all artists he doesn’t want to hear about any of his mother’s "ideas" of what to take photos of.

Thorin is probably a lot like your son. He loves baseball, The Avengers, playing UNO, talking about farting, taking pictures, learning and having friends.

Photo by Thorin
My Son Needs More Time

When most people see Thorin they think he is slow, dependent and not capable of complexity. We are a society that values doing everything fast. That world is a hard place for my son who needs more time to process almost everything. He takes in the information but registering it and integrating it takes time. If he is nervous or upset it takes even longer. If people could be a little more patient they would get to see who Thorin really is.

Thorin has speech apraxia which means he has fully formed thoughts in his head but has difficulty communicating them. If he wants to see his best friend Ella he will say to me: "Ella!" I'll ask, "Give me the sentence—what about Ella?" He'll respond, "I want Ella play."

If I try to encourage him to elongate a thought with others often I hear: "Oh, that’s okay he doesn’t have to" or "What did he say?" My son invariably crumples.

We could all benefit form just taking things a little less fast and making sure everyone is part of the conversation.

My Son Does Not Enjoy Mascot Status

I was terrified about him being bullied when he started kindergarten a couple years ago. I was happy to discover he was literally embraced—as in, hugged by his classmates. One day he was late to class. When I walked in with him we were actually mobbed by the entire class so thrill to see him. I thought that was endearing and sweet. What I came to understand from my son is that he found it frightening, overwhelming and babyish. As his mother I was so happy he was not being bullied that I was negligent to the fact he was being killed by kindness.

My son is constantly reminding me he is a "Big boy." He is quite aware of when he is being treated as less than his chronical age and doesn’t like it.

I cannot afford to have a mascot around the house, anyway; I need help. So he is expected to clean his room, put his clothes away, do dishes (not just his), walk the dog, make his breakfast, help with all other meals and basically whatever he can to help this household.

There Will Be No Extra Credit for Helping My Son

Aside from being picked up and hugged, the thing my son likes least is being helped when he doesn’t want it or when he didn’t ask for it. I was with Thorin on the playground convincing him it was time to go into the school. Three children took it upon themselves to help: one grabbed Thorin by the arm dragging him, while one yelled, "You have to go now!" and the third was trying to put his backpack on him. I stepped in: "Stop, please! I’m the mother. This is not your job."

Two different parents reached out to my husband and I at the school to let us know their children wanted to help Thorin. This extending of "friendship" felt more like outreach and it was accompanied by a lot of smiling and exuberance—"Isn’t great! They really like him!" I got this feeling I was going to be asked to write college references for these kids someday.

Thorin and I did a class presentation together where he told his classmates how he felt about everything: the hugging and the helping.

Inclusion Means Everywhere

I often see my child ignored in group settings. Whether we are at the park, beach, library, a party or anyplace there are other children who may or may not know each other. He constantly tries to reach out by saying: "Hi!" or "Hey boy!" He is mostly not reciprocated to. I have had parents not meet my eyes when I beseech them with mine to do something. This is different than "mascot status" or the "helping friend." This wish is about the social contract all of us benefit from being included as an equal.

When I was kid if we were somewhere and a kid was on the sidelines one of my parents would inevitably come over to say this: "Hey, see that kid? Go include him (or her)."

"But, he’s weird!" I would exclaim.

"You’re weird, too, to somebody. Go. Now." Or "How do you know what he is? Go. Now."

And, I did. And, it was fine.

Including everyone is an important ideal. It is one I work to instill in our son.

On the whole the most profound limitations people with Down syndrome have faced have come from others. In the not too distant past people like my son were institutionalized, refused adequate health care and not allowed in school. Changing those conditions has more than doubled people with Down syndrome’s life expectancy and has resulted in individuals who not only finish school but may go on to a post-secondary education, independent living and even marriage.

My plea—because that’s what mothers are want to do is "plea"—is that you take to heart my wish list and help the next generation understand that my son has the same need to belong as your child.

Selfie by Thorin
You can follow Kari Wagner-Peck on Twitter @atypicalson

Wednesday, March 18, 2015

I am now as smart as a fourth grader

As everyone knows, science fair projects can be very educational...for parents. Because in order for your child to grasp the material, you have to. There is no pretending you know about protons, neutrons and electrons when your child has a bazillion questions about them. Finally, all those times you spaced out in science class or crammed for an exam then promptly forgot the material return to bite you in the butt. And, why, yes: I did major in English in college.

Ah, science fair projects, three words every parent dreads. There's a reason this poster by a mom went viral last year:

Sabrina's project: static electricity. She had to come up with a hypothesis and research exactly what caused static electricity. She had to test out various materials (rubbing a balloon against each to see when it would stick for the longest), make a graph, draw a conclusion. My only previous knowledge of static electricity came from childhood, when my sister loved to torture me by shuffling toward me on the carpet and....ZAP!

Happily, Sabrina is fascinated by science; she goes to STEM club meetings during lunchtime. Max seems into it, too—both kids love doing science experiment kits or our own versions. Good one: Leave a hard-boiled egg in a cup of white vinegar for a couple of days, covered and out of sunlight, until the shell dissolves. Peel off remaining skin, rinse in cold water, bounce the egg on the countertop and your kids will think you are a goddess and oh, if your high school science teacher could see you now!

One thing I learned in the course of doing the experiment is that some science books for kids are terribly written. But bit by bit, with help from online videos, Sabrina came up with an explanation and it made perfect sense to me.

I really enjoy putting together presentations and had to restrain myself from telling Sabrina how to do her board. So the board is all Sabrina, and she's very proud. I'm even prouder! And, wowee, I am all sorts of savvy about static electricity! Tomorrow morning I'll head to her science fair, where Sabrina will explain her experiment and let people try their hand at determining whether wool, cotton, tin foil, silk or hair cause the most static. (Spoiler alert: It's wool.)

Here's another one for ya: Place an empty aluminum soda can on the floor. Have your child rub a balloon all over his hair or do it or him. Bend down, hold the balloon about an inch away from the can and watch the static electricity push the can. Your kids can even do can races.

Go on, be impressed.

Tuesday, March 17, 2015

Win an awesome new mobility device for kids: the Scooot

When Max was little and eager to get around, but not yet able to walk, I would have bought him jet-propelled wings if it would have helped. So I'm really excited about the Scooot, a clever and cute mobility device that gives kids support for flexing their muscles—and independence. It's from Firefly, the game-changing company that debuted the Upsee last year. Firefly also just came out with the Playpak, a portable bag filled with rolls, wedges and supports.

The Scooot is geared toward kids ages two to six years old, up to 48 pounds. There are two versions. The 3-in-1 Scooot offers three ways to use it:
Crawl Using just the cushion-covered seat, kids can move and explore on their stomachs, strengthening their upper bods and tummy muscles while lifting their heads and shoulders
Scoot With the support of a backrest and lap belt, a child can propel himself around using his fee. It stabilizes the trunk and pelvis, freeing up a kid's hands to explore. Bonus: The padded cushion and lap belt are both machine washable.
Ride Kids zoom around the floor by manuevering the wheels. This function can also help build upper body strength, and let kids further explore their surroundings and boost their spatial awareness. There's an adjustable footrest, too.

The 2-in-1 Scooot comes without the wheels—kids can crawl and scoot. Check out the video:


Enter below to win either a 3-in-1 Scooot (worth $595) or 2-in-1 Scooot (worth $395), whichever version is best for your child. The contest ends on Monday, March 30 at 12:00 AM. The Scooot should be sent to you within two weeks afterward. Check in with your child's physical therapist to make sure the Scooot is appropriate for him/her.

This giveaway is open to residents of the United States only. 

You must leave a comment below to enter; feel free to explain how the Scooot could help your child. You can score bonus entries, too—see the full rules in the Rafflecopter entry form. Good luck!
a Rafflecopter giveaway

Monday, March 16, 2015

A little nudge never hurt a kid with special needs

Max has been watching Disney Jr. for years now. I could care less that he's 12 and still loving Mickey Mouse Clubhouse and Doc McStuffins—what makes him happy makes him happy. Still, sometimes Max gets stuck in his ways and needs a nudge.

Sunday, we were having a lazy evening. OK, technically, I was the one who was lazy. The kids and I were lying in bed and watching Sofia the First. Technically, I'm also really bored with Disney Jr.

"Hey, Max, want to try the Disney Channel?" I asked. "A lot of kids like that."

"No!" he responded, because that's always his first instinct when I ask about trying something new.

"C'mon, Max, the shows are funny!" I said. They lean toward the vapid side, but Max likes Disney and I figured this would be a good next step; National Geographic Channel just wasn't going to cut it. He's occasionally watched Disney shows with Sabrina. Also, and maybe this is a sad truth, he doesn't have that much interaction with other kids his age and I thought it would be good for him to hear and see them in action. Disney-fied, but still.

And then he said, "Yeah!"

We tuned in to K.C. Undercover. I couldn't bear to watch (K.C. is 16 and has discovered her parents are spies!) so I read. Max giggled at parts. He found it particularly amusing when a boy on the show was pretending to be ill. "No ich!" said Max. ("Not sick!") Then some dippy made-for-TV movie, Bad Hair Day, came on, and Max was mesmerized. Sabrina felt compelled to narrate certain parts:

"Max! That's not really her daddy! There are cameras you can't see!"

"Max! She's not really sad! She's just acting! You know, like pretending! It's not real!"

Oh, but Max wanted to narrate too. He pointed to the villain in the movie and said "Bad guy!" He clapped when he got caught. He exclaimed "Wow!" when the teen girl dressed up for prom. He watched the whole thing.

Success! Er, well, relative success—I have now succeeded in getting Max to like more TV. But he was clearly ready for it.

Sometimes, you have to push a little. Although I'm gonna really regret this if Max starts rolling his eyes or giving me any Disney tween attitude.

Image: YouTube

Friday, March 13, 2015

The Special Needs Blogger Weekend Link-up: Hey, babe, you come here often?

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: See the child behind the disability, says this video

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, March 12, 2015

The boy who really, really wanted to talk

Max is a master of his speech app—he quickly zooms around on it, tapping symbols that speak words for him or typing out words and sentences himself. At school, his iPad is his main form of communication, although he also tries to express himself verbally. At home, he tries even harder to speak up. I think he expects Dave and me to understand him, even though sometimes we don't—but mostly, I think, this boy really, really wants to talk.

Here's a recent video with him discussing his favorite topic.  First he tells me he's going to Chicago on March 27, 2015. Then I misunderstand when he says "fire chief truck" (we found a retired fire chief who does organized tours). The rest is self-explanatory.

When iPads and speech apps first came out, I remember that—like many parents—I wondered if Max would get so fond of the speech app, he wouldn't want to keep trying to talk. Well, that sure hasn't happened. If anything, he seems more determined than ever to speak. In fact, the only time I ever see this kid get frustrated is when I don't understand him. All this is why I was blindsided by what the speech therapist told me at his recent IEP.

Overall, the education and therapy news was good. Max's reading is improving. Math continues to be a challenge, but he's working hard, same with social studies and science; the teacher is doing her best to bring the concepts down to reality level using hands-on activities, and involving as much repetition as possible (which is how Max learns best). He's been spoon-feeding himself well, learning to manipulate his pants during toileting, going up and down stairs like a pro and playing sports enthusiastically.

The speech therapist—a lovely, experienced woman who truly cares about Max—talked a lot about Max's growing ability to generate longer sentences and express ideas using a variety of nouns, verbs and descriptive words. When she'd had her say, I asked what I thought was a key question: What was she doing to work on articulation?

What she basically said was: Max's primary means of communication is going to be his iPad, so she believed it makes the most sense to focus on that, along with expanding his command of language and his perception of how conversation works. 

"But he really wants to articulate words," I said.

She noted that she wasn't, of course, giving up. But she also made a point of saying that the school has provided years of speech therapy to him and she didn't see much improvement.

A mix of anger, frustration, sadness and pure dejection washed over me, and it took a lot of effort to keep it together for the rest of the IEP. 

I do not have blinders on. Hardly. Max likes to talk about a lot of the same stuff (Chicago, fire trucks, his firefighter friend Angelo, mac 'n cheese), which is the main way it's easy for me to discern what he's saying. His speech isn't clear; as the IEP correctly noted, "Overall intelligibility is significantly reduced to the unfamiliar listener." I also agree that a speech app (or whatever new technological marvel comes along in upcoming years) will be his main form of communication throughout life.

But Max is only 12 years old and I know—if I know anything—that his potential for speech is hardly tapped out. The speech therapist who sees him on weekends is able to coax out consonants (his biggest challenge), including g's and otherwise elusive "k's" and "d's" plus final "m" sounds like "Mom." I called her later, distraught. "I feel like he has a lot of room for improvement," she said. "Don't lose hope. He has many years ahead of him to grow."

She noted that now that iPads and apps were so prevalent, there were therapists who were choosing to quit focusing on speech. I'm not sure how generally true that is, but it certainly seemed to be happening with the therapist at school.

Like many families of kids with special needs, we have relied on therapists over the years for coaxing the best out of Max and helping us best help him. For the first time in his life, a therapist was saying no can do.

Max gets speech therapy three times a week at school and just once a week at home, so school is his main source of speech guidance. I'm either going to have to supplement more at home, or figure out a way to get the speech therapist to agree to focus perhaps on just one speech goal—say, more d's—or, likely, both.

My first plan of action is to get an independent assessment from an experienced speech therapist who hasn't yet before worked with him; that objectivity seems key. And then, I'll take it from there.

I'm usually pretty indefatigable about getting Max what he needs. Bu this one's bringing me down. It's not just that I'd like Max to be able to speak more clearly—it's that Max does.

Wednesday, March 11, 2015

My kid is doing a great job of raising me

I had a conversation the other day with a guy who works in the mailroom at the office. He has an intellectual disability. He no longer works in our area, but sometimes before he leaves at the end of the day he pops into my doorway to chat a bit. I'm always happy to see him.

When I first started working in the magazine business, there was another guy with ID who also worked in the mailroom. I spoke with him, too, but I always felt sorry for him.

I don't feel badly for the guy at my office now. I'm glad he is employed, and engaged in what he does. Talking with him is part of my office life—I mention it only because of the contrast in my attitude between then and now. 

It's because of Max, of course.

A few months ago, on Max's birthday, my wonderful friend Bari Nan wrote Max this message on Facebook: "Every minute you've been on this earth has been a gift to your family—and their friends. You are doing a GREAT job of raising your parents!"

I thought it was one of the truest things anyone's ever said. There's so much I've learned from parenting Max. About patience: Max is on his own timeline, and nobody else's. About focusing on what your child can do, rather than what he can't. About the balancing act of encouraging independence but also helping your kid. About being an advocate and a champion for the services he needs—and the inclusion he deserves. About trusting my gut no matter what experts say. About doing the best I can and not beating myself up for being unable to do every single thing.

Most of all, Max has opened my mind, transforming my perception of disability. I think until you have a child with special needs, or grow up with a a person in your family or close friend who has a disability, you don't fully perceive the ability. You don't get that people with disabilities aren't to be pitied. You don't get that they can have a full, rich, and happy life—just like any other human being.

Oh, and let me not forget: I have also learned how to speak the language of doctors and therapists, talk my way into any kind of medical appointment, "persuade" (read: bulldoze) the insurance company to pay bills, fill out forms with amazing speed, get more done in a day than seems humanly possible and leap over tall buildings in a single bound.

Thanks, Max. 

Image source: Flickr/kennymatic

Tuesday, March 10, 2015

See the child behind the disability, says this video

I recently saw this video, The Eyes of a Child, and it's haunted me ever since. Because it's so telling and, in many ways, true to life.

It's produced by the Noémi Association, a nonprofit in France that hopes to change the way society views those with disabilities. The organization invited a group of parents and kids to play an "educational game," and taped the results.

To the children, the girl with special needs is just a kid making a funny face to imitate. The adults, however, don't join in. They appear uncomfortable, and clearly think it's wrong to mimic a child with special needs. One dad leans over to check on his child's reactions.

If you have a kid with special needs, you get what's going on. Often, adults view our kids as children to be pitied, ones wholly unlike other children—exactly why it seems so "wrong" to mimic them. Although the kids in this video engage, in real life they, too, sometimes keep their distance, unsure of what to make of a child who doesn't seem like them.

This video sends a clear message: Please, remember that kids with special needs are still children at heart. They like to play, have fun and enjoy life—just like any other child.

Also see:
Here's how to talk to your kids about ones with special needs.

Monday, March 9, 2015

Throw pillows are the secret of life

Yes, I have the answer: Throw pillows are the secret to life, or at least one of them. And no, I haven't lost it, nor has Martha Stewart broken into my blog. It's like this:

We bought the wooden front bench in our hallway when we moved into our house 12 years ago. I never noticed that it seemed kind of bare until recently, when I had a few rare quiet minutes and I was roaming our first floor. I decided it would look much better with a throw pillow.

This: Taking time to look at something old and see it in a different way. When does that ever happen? Never ever ever. Let alone thinking about home accessories; our latest additions are usually along the lines of a glass of vinegar sitting on our living room bookcase with an egg in it. (Sabrina science experiment.)

A couple days later, I jumped into the car on a day off work, with the sole mission of finding a throw pillow. I headed to Bed, Bath & Beyond, the store that some might mistake as being a secret to life but is most likely what heaven looks like. (With everything free, of course.) I hit the pillow area, browsed to my heart's content and found an oblong one with a cool green print. Green always makes me happy. Done!
This: Doing something solely for me. I hardly ever go shopping just for me anymore—it's almost always for the kids or Dave. True, this was for the house but a pillow is only something I'd notice or care about.

Then I wandered aimlessly around the store. I hovered in Bridal Registry and checked out china patterns. I ogled some nice-looking pots and pans (if my twentysomething self had known I would someday think pots and pans were sexy, she would have been very scared). I explored the bath area, redesigning the color scheme of our master bathroom in my head because I am wild and crazy that way.

This: Enjoying non-purposeful activity. It's something that's very, very hard for me. Even at home, on a day off or at night, I find it difficult to sit on the couch and just read because I am forever jumping up to do something—de-clutter, clean, get stuff ready for school for the next day, Mom job etc. etc. etc.

I brought the pillow home. Of course, nobody else even noticed it was there. But my eyes fall on it every time I walk through the front door and it makes me just a little happier. Yet another secret to life: Happiness doesn't often happen by the bulk load, but those little boosts really can mean a lot. 

Friday, March 6, 2015

The Special Needs Blogger Weekend Link-up: Jump in!

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: So, what do you say when someone uses the word "retard"? 

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Happy linking!

Thursday, March 5, 2015

The most depressing homework in the history of homework

It seemed like a great thing: Max had to read a page about Olympic gold medalist runner Wilma Rudolph and fill out a mini research report. We sat at the kitchen table, where we usually do homework, and I helped him read it, discussing points along the way so he could better understand and retain the information.

The page noted that she lived from 1940 to 1994. I wasn't sure Max understood the concept of death, and I'm still not quite sure why I decided to try to explain it to him in the midst of the Wilma Rudolph report, but I did.

I said, "Max, Wilma Rudolph died in 1994, which means she stopped living."

Max looked at me, curiously. He put one hand to his eye. "Eye?" he asked.

I was confused. Then I realized he meant: Did she cry when she died? He'd seen me crying when my dad died in 2011, and he was making that association.

"No, Max," I said. "When you die, your heart stops beating, you don't breathe and you aren't alive anymore. So you can't cry."

"Why?" he asked. As in: Why do people die?

"People often die when they are very old, or if they get sick," I said.

"Ick!" he said, pointing to me and making a coughing sound. I've had a pesky cough for three months now.

"No, I''m OK, Max!" I promised.

Sabrina walked into the kitchen. "It's like you go to sleep and you don't wake up," she said.

Then her face crumbled and she started to cry.

"Honey! What's wrong?" I asked.

"I don't want you to die," she sobbed. "I want you to always be here."

I grabbed her and said that Dave and I would be around for a very long time to take care of her. Then Max's bottom lip started trembling and I hugged him with my other arm.

Eventually we all calmed down, and I helped Max finish his report.

File under: Good intentions gone awry.

Wednesday, March 4, 2015

So, what do you say when someone uses the word "retard"?

"My name is Inigo Montoya, you used the word 'retard,' prepare to die!'" said no one ever. Still, many parents of kids with intellectual disability have strong reactions when people toss that word around, part of a deep desire to defend our children's honor.

Today is the seventh annual day of awareness for Spread The Word To End The Word, a campaign started by the Special Olympics. Why? The r-word has become a slur. When it's used casually in conversation as a synonym for stupid, loser, pathetic, weird or non-functional ("The new website design is so retarded!"), it perpetuates perceptions that people with intellectual disability (once medically described as "mentally retarded") are stupid/pathetic/losers/weirdos with lesser abilities.

This isn't a matter of freedom of speech, unless you're the type to believe racial epithets are OK. This isn't about being overly sensitive, either, given that the word demeans an entire population of people. Many doctors, hospitals and schools have quit using "mental retardation" as a diagnosis since it has become pejorative. Heck, the Supreme Court ditched the term last year.

Of course, this isn't just about a word; significantly reducing its usage won't automatically transform people's attitudes toward people with disability. But asking people to reconsider the word and what it signifies is a way to spark conversation about how we view people with intellectual disability, and rack up more respect for them along the way.

So there's that. And then there's reality of how to deal when someone you know drops an r-bomb, a habit that dies hard; a lot of us grew up using that word. You don't want to seem preachy. Nobody wants to come off as Mr. or Ms. Word Warrior.

I've found that it helps to first acknowledge the person didn't intend to be offensive (as is usually the case), and then give an explanation if someone doesn't understand why the word is so hurtful. Once, I was walking home from the train station with a neighbor who mentioned how "retarded" something was. I said, "I totally know you didn't mean anything by it, but I find that word offensive," and she immediately got it and apologized and we moved on.

Sometimes, it's not possible to say something on the spot. I was out for lunch with a group of friends the other week, and as we chatted away one of them said, "That's retarded." I wasn't going to interrupt our gossipfest plus I thought she might be embarrassed if I said something, no matter how nicely. So that night, I emailed:

Hi. So, I wanted to share something with you, I hope you don't mind. I think you won't because you are one of the more caring and wonderful people of this world. At lunch, you used the phrase "That's retarded." I didn't bring it up then because we were all talking a mile a minute, but it's a word that's become offensive to parents of kids with special needs, because of its associations.... I KNOW of course you didn't mean anything by it! I used to use it too. 

She wrote back, "It's a word that I usually never use for good reason, and it flew out of my mouth.... I am so glad you said something." Usually, people get it, though some—including smart and otherwise open-minded people I know—staunchly defend it as a vital descriptive phrase, even as they note they'd never call a person with cognitive impairment "retarded." For them, there's karma.

I'm similarly straight up if a stranger says the word. At work is a whole other thing, though. A few years ago, I was at a new freelance gig and one of the people who'd hired me—again, someone intelligent and cool—regularly said "That's retarded!" It didn't seem appropriate to say anything until I knew her better (and vice versa) but in the end, a coworker who knew I cared spoke up.

Some naysayers insist this is a futile cause; come on, they say, aren't there more important stands to take? The reality is, parents of kids with disabilities are constantly trying—day in and day out—to get our kids the inclusion and equality they deserve. This is just one more thing we do help pave the way for our kids, who travel down the proverbial road of life bearing heavy stereotype baggage.

You never know where a discussion will lead. Yesterday, a writer I adore posted a Facebook update that started with her kid describing a character in a book as "retarded." I noted that I find the word offensive. She said she knew my take and "vehemently disagreed." One of her friends chimed in: "I strongly feel retarded should be reclaimed. I've never used it to describe the developmentally disabled in my life. But some people are just f-ing retarded, and there's no better word. Also, no one's using it anyway, and I hate to see a good word lie fallow."

So I said, "If either of you had a child with intellectual disability, you might feel differently. This isn't about name-calling, it's about perpetuating the idea of people with intellectual disability as being stupid/losers/weird when the word is used as a synonym for these descriptions. Consider this: Hey, that's such a bone-headed move, you're such an AVIVA."

The woman made a comment about more "tact" and "civility" and having conversations without "bullying." I responded that I was trying to make a point—and that it wasn't exactly tactful to talk about letting a "good word lie fallow" when I'd just said I had an issue with said word. And then, she noted that our kids had a light "so pure and lovely that has nothing to do with the cheap facility of IQ points, and cannot be extinguished." And I couldn't have agreed more.

Please, use another word. My son, kids and adults like him, the people who love them and Inigo Montoya would really appreciate it.

More on this:

Would you call my child a retard?

20 reasons to respect my child with special needs

Do you get why this word hurts so much?

If you ask people not to use the word retard

Tuesday, March 3, 2015

Lesson from Max: Throw your hands in the air and wave 'em like you just don't care

Max took to the dance floor at his little cousin's birthday party the other day. He was surrounded by little girls wearing fairy wings. He was wearing fairy wings. And he was having the time of his life.

I stayed home, sick, and Dave sent me the video. It's funny to see the contrast between the kids. There's Sabrina, being the blasé 10-year-old. And there's Max getting into it.

I consider Max's lack of self consciousness a great thing. He doesn't care that he's doing an activity for younger kids or that he's a lot older than the girls all around him. Same goes for when he hits rides for young children at amusement parks, or when we've done character meet-and-greets at Disney.

In general, Max doesn't think of himself as different from other kids, or consider it an issue. In fact, the other day when we were talking about his cerebral palsy (I showed him a video he's in), he wanted to know what Sabrina has. "An attitude," I offered.

Max also doesn't seem to care what people think of him; he is oblivious to the curious stares he gets from kids when he walks around in his bright red Fire Chief hat (which he miraculously left at home on the day of the party). He also doesn't notice the blatant gawking of rude adults.

Max just knows to be himself, to enjoy himself and to love life.

I think we could all learn from him.

Monday, March 2, 2015

Yes, cerebral palsy can: the video

"Wow!" said Max. That was his response this weekend when I showed him a new video of people with cerebral palsy discussing—and showing—their abilities. He's in the video, so I'm pretty sure that's one of the reasons he was impressed.

March is Cerebral Palsy Awareness Month. In honor of it, My Life Without Limits—part of United Cerebral Palsy—put together a video, #CerebralPalsyCan. Post your own videos on social media with the hashtag #CerebralPalsyCan so they can be shared on March 25, National CP Awareness Day.

"What do you think that video tells you?" I asked the kids.

"That people with cerebral palsy can do lots of stuff!" said Sabrina.


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