Thursday, July 31, 2014

I don't mean to hurt people with disabilities even though I call them stupid, people say

"My comment was in no way intended to slight them in any way," said a candidate running for county commissioner in Tullahoma, Tennessee. W.D. Smith (R) had called someone a "wondertard" on a local politician's Facebook page, in the course of a discussion about candidates. Smith went on to explain, reports say, that a "wondertard" is "someone who is so damned stupid they make regular retardation look like genius." (The comment was subsequently removed).

When the Manchester Times asked Smith about his choice of words, he defended himself in a Facebook message noting, "If you read the context of that conversation, the lady it was addressed to was being very rude and annoying. Now, I don't play the politically correct bull**** games that you people at the Manchester Times play. Let's get that straight right off the bat."

He then continued: "Now, yes, I shouldn't have said that. It was a stupid statement and if anyone got upset with me, I apologize. My heart goes out to people who have disabilities. My comment was in no way intended to slight them in any way."

This is the jackpot: It's basically everything wrong with people who don't get what's wrong with using the word retard, with unfortunate perceptions of people with disabilities tossed in.

There are people who are quick to tell you that even though they use the word "retard" or its equally offensive offspring "wondertard" or "celebutard" or "f***tard" they of course do NOT mean it toward actual people with disabilities, nosireebob.

There are people who think that parents like me who bristle at the use of the word "retard" are being politically correct word police. That we need to get a thicker skin. That we should focus on stuff that will really help our kids.

There are people who think people with disabilities like my son are inferior human beings because of their IQs. That they are worthy only of pity.

Mr. Smith and company, I'll fill you in:

• If you use the word "retard" to describe someone you think is acting stupid, then you are equating stupidity with an entire population of people once considered to have "mental retardation" and perpetuating stereotypes—the kind that haunt people with intellectual disability. The term "mental retardation" is outdated, because the word retard has become pejorative. Most states no longer use the wording in their legislation. A lot of educated and aware people avoid using it. It's insulting. It's demeaning. It's hurtful. When you use it, you essentially are calling people with intellectual disability stupid, even if you're not saying it to their faces.

• My son may have intellectual disability but his IQ tells you nothing at all about his abilities. So don't equate intellectual disability with ignorance. It's people who toss the word "retard" around who are ignorant.

• My son does not need your heart to go out to him. He lives a good life. He's happy with himself. I'm happy and proud of him. Countless parents of kids with special needs stand in awe of their children and do not consider them the least bit pitiful. Quit treating them like tragedies.

• Parents like me want the world to better respect our children, and others like them. Speaking out against a word that casts a negative light on people with disabilities is just one thing we can do. And so, we do.

I am so, so tired of hearing "Oh, I didn't mean to slight people with disabilities."

I am so not tired of speaking out about it.

Here's a story for you. Two families go to a fair with carnival rides; each has a child with special needs. They try to go on a ride and are told by the guy manning it, "We don't let those kind of people ride this ride." As their children stood there.

This just happened in Davenport, Iowa. On Special Needs Day at the annual Mississippi Valley Fair, where some employees didn't seem to have gotten the memo...about being decent human beings.

Unless you have a child with special needs in your family or are a person with disability, it's hard to know of the discrimination—blatant or otherwise—that they face. The everyday uphill battles parents fight to get our kids included and help people see see them as people, not pathetic.

Our kids need every speck of respect they can get.


Photos: Flickr/Sebastiano Pitruzzello

Wednesday, July 30, 2014

Why am I so good at taking care of everyone but myself?

"I wish I could take my left arm off," I thought when I woke up yesterday. My shoulder was hurting, badly, as it has every morning (and most of the day) for the past few months.

Given that I do not have Mrs. Potato Head parts, removing the arm was not an option. So I went downstairs, grabbed the ice-pack wrap from the freezer and put it on. The cold numbed the area and for a few minutes, it felt better.

My left shoulder started hurting several months ago, seemingly out of the blue. At first, it felt a little strained when I reached behind my back to hook my bra. Then it got harder to make a ponytail. Then I could no longer even reach behind my back.

For weeks, I did what I typically do with myself in these sorts of situations: ignore it. Remember that old commercial lyric "I haven't got time for the pain?" That's me.

I am totally (er, mostly) on top of everything and anything having to do with the kids—their activities, school and event forms, homework, clothing needs, food needs, whatever it is that will make their existence healthier, happier or just plain better. I am downright masterful at organizing and juggling Max's doctor visits. I make sure Dave has a steady supply of clean clothes and a good stash of almonds (his fave snack), and that we make plans with his friends. And I'm on top of his doctor appointments, too. I clean and declutter the house, hire people to fix stuff as necessary, pay bills, coordinate the kids' birthday parties, buy presents for other kids' parties, plan vacations, and, like any mom, do approximately eleventy billion other things.

Oh, yes, I AM ON IT. "It" being everything but me. I don't work out enough. I eat fine, but not as well as I should be. I try to ignore discomfort over dealing with it. Caring for myself is usually last on my to-do list.

When my arm started aching even when I wasn't doing anything with it, I dragged myself to an orthopedist. An X-ray revealed...nothing. But given my limited range of motion, the doctor said I was on my way to a frozen shoulder if I didn't deal with it. She advised me to get physical therapy, and recommended several PTs she knew.

One of the physical therapists was conveniently located around the corner from where I work. The office looked neat and clean, and the PT seemed knowledgeable and nice; he showed me some exercises to do. On my next visit, an assistant said she'd watch me do the exercises. No thanks, I said—I wanted the physical therapist there with me. But as I soon learned from observing his practice, this guy was having his unaccredited assistants do his work. I didn't feel comfortable with that. When I called Cigna to ask about it, the staffer basically said they didn't care who did the therapy.

I hit another PT center, which looked run down. The physical therapist sat me down in the middle of the exercise room for our initial consult. When I asked for privacy, she explained that she had to stay there because she needed to keep an eye on a client working on a machine behind me. I walked out. I do have pretty high standards for physical therapists, given the awesome ones I have met over the years who have helped Max, but finding one who'd give me his or her full attention didn't seem like too much to ask for.

Back to: ignoring my shoulder.

Things got worse. A lot worse. Reaching up or to the side became a challenge, too.

Sabrina's ball rolled under the car while she was playing in the driveway and I tried to grab it, using my left arm. OUCH!

I slipped a dress on. OUCH!

I pulled Max's pants up when I got him dressed in the morning. OUCH!

I shampooed my hair. OUCH!

I grabbed a jar of pickles from the refrigerator. OUCH!

I got smushed into a subway car like a proverbial sardine and couldn't reach a pole with my right hand, so I held on with my left. OUCH!

I started to rake some leaves. OUCH!

I handed my cell phone to Max in the back seat of the car. OUCH!

I helped Max up the stairs. OUCH!

I pulled open a drawer at work. OUCH!

I rolled over in bed. OUCH!

I sneezed. OMG. OMG. OMG. Really? @$&!!!

Now my arm didn't just ache all the time, it hurt. I started putting my bra on with the clasp over my stomach, then gently twisting it around back. I popped a lot of ibuprofen and tried to use my left arm as little as I could. The injury came in handy for excuses like "Dave, can you give Max a bath? My arm is hurting." But it actually was.

A coworker recommended a chiropractor. He noted that my neck was completely out of whack, most likely due to years spent hunched over computers. That may have contributed to my shoulder problem. So did the work shoulder tote I've lugged around for years, which the chiropractor lifted and said, "This isn't a bag, it's a weapon!" In talking with him, I also realized that the two hours I spent hacking away at forsythia bushes in May could have strained my shoulder. 

After three sessions, the chiropractor said he couldn't help me, and referred me to the PT department in his office.

Meanwhile, desperate and in pain, I tried acupuncture. Yes, that therapy in which a practitioner pokes needles in you. Very skinny needles, and you usually do not feel them going in. It did help alleviate pain for a few hours after the session. Until, say, I'd sneeze. OMG. OMG. OMG. @$&!!!

Yesterday, I had a session with the new PT. He stretched and manipulated my arm for a good thirty minutes, and by the time I left it felt less stiff and I was able to raise it higher than I had in weeks.

Maybe, just maybe, I'm going to get my left shoulder back.

But I'm going to have to carve out time to do the at-home stretches. And keep applying the ice-pack. And make it to the PT appointments. And I have to put myself first because that left shoulder and arm really do come in handy, and if I don't take care of them nobody is going to do it for me, not even if I hire someone off Craig's List.

Me, me, me. This is all about me. 

Tuesday, July 29, 2014

In trying to save their child, these parents will save others

What would you do if your child had the only known case of a genetic disorder? Anything and everything you could within your powers. For Matt and Cristina Might, that meant meeting with a stream of specialists—and taking it upon themselves to find other children with the same rare genetic disorder their six-year-old has, N-glycanase deficiency. The result of mutations of the NGLY1 gene, it causes global developmental delays and movement disorder, among other issues. Without other known cases, doctors could not pinpoint the cause of Bertrand's disorder. No pharmaceutical company would be willing to look into the disorder or trial drugs.

Bertrand with his sister, Victoria, and new baby brother, Winston

I met Cristina several years ago through the blogosphere, two moms doing our best to help our boys. She and Matt, who live in Salt Lake City, Utah, went on to accomplish what the medical world could not. Matt wrote a long post about Bertrand's medical history, Hunting Down My Son's Killer. It went viral—and led to finding more children with the disorder.

The couple teamed up with another family to create a coalition to educate people, locate more patients and fund the science for treatment and a cure. The New Yorker just ran a story on the Mights, One Of A Kind, by Seth Mnookin; if you read no other article this week, read this. Then share their story. As of this month, there are just 16 known cases of N-glycanase deficiency, and the families are seeking more.

Genetic sequencing promises to be a big part of our medical future. It enables researchers to compare the genetic material (genome) of people who have disorders to see what mutations they have in common. It used to be prohibitively expensive, but the cost has dropped and more companies offer it. I've been reading a lot about 23AndMe, a company created by Anne Wojicki; New York magazine recently profiled them in The Google of Spit (she used to be married to Google cofounder Sergey Brin).

For years, 23AndMe customers could just spit into a tube, mail it off then get results by email. The $99 report would give ancestry information along with the likelihood of a person getting various diseases. You could find out if you had the BRCA1 mutations (linked to a higher incidence of breast cancer), the genetic variant linked to cystic fibrosis, the gene strongly associated with Parkinson's. But your information wouldn't be just for you—it was fed into a gigantic database where scientists could do all sorts of genetic-based disease and drug research. That data is being put to good use; yesterday, a National Institute on Aging study came out that identified new genetic risk for Parkinson's; it's the largest Parkinson's genome one done to date, with 50 scientists (including ones from 23AndMe) contributing data.

After creating one of the world's biggest genetic data banks, 23AndMe had to stop offering health-related reports tracks last November. That's when the Food and Drug Administration warned that they were doing medical testing without its approval or the oversight of doctors. The company has to prove the tests will inflict no harm. Until then, it's only offering ancestry-related genetic reports and uninterpreted raw genetic data.

I've wondered whether I'd want our family's genetic report. Although Max's cerebral palsy comes from a stroke at birth, there is a growing body of evidence that the majority of cases of CP may be caused by genetic abnormalities. Yes, I'd like to know our chances of getting heart disease and Type 2 diabetes, which can be preventable through lifestyle changes, but I would not want to know about diseases for which there is no cure. My father had Parkinson's, and I am at increased risk (though not as much as if I had multiple family members who had the disease). It would do me no good to get a more specific risk factor—I would live in dread.

For children like Bertrand, advanced genetic testing and sequencing offer hope. So does the social media community, as the Mights' story also shows. There's much comfort and inspiration in this space, but also the possibility of changing the course of medical history—and saving children's lives.

Photos courtesy of Cristina Might

Monday, July 28, 2014

As long as he's happy

"As long as he's happy, that's all that matters," people like to tell me about Max. A man said it to me at the fair we were at yesterday.

And Max was happy, as he often is. There were fire trucks there, and a chance to use an actual fire hose.

There were train rides and car rides. A mini roller coaster he liked to just watch.

There was a talking robot named Max who said "Hi, Fireman Max" in his robo-voice and I think Max may have accidentally touched his robo-privates, but I'm not sure.

There were animals to feed. (Hot tip: Donkeys vastly prefer the grass you can rip up outside the tent, free, over the cup o' feed you pay for.)

There were games to play and yellow, pink and blue (blue!) lemonade and ice-cream. Heck, most kids at the fair seemed happy. Max was no different.

People only mean well when they say all that matters is that Max is happy. I know that. And yet, it gives me pause, and a twinge of sadness. Because it implies that Max may not be capable of much of anything beyond bliss. Oh, but he is, and those who are close to him know it. And I hope the future holds a lot more than happiness for Max, as I've said here before: a relationship, a job he loves, experiencing all that life has to offer.

Yesterday, after the guy manning the ride said "As long as he's happy, that's all that matters!" I nodded, as I usually do. I kept thinking about what he'd said as I watched Max stand in front of a band that was playing on a stage, grinning. A few minutes later, he said he was thirsty and I helped him drink blue lemonade and he said "Ahhh." 

And I thought, standing there in the heat as the boppy music played and kids danced: Max is happy. And while it's not all that matters to me, it's what's important for him. 

I often do that, as his mom—I project my wishes and dreams onto him. And probably that will never stop, but it would do my heart good to be glad for his happiness alone, and not consider it something that needs to be topped. Max will be so, so lucky if he always has that happiness, whatever else the future holds for him.  

Just another step forward in my development as a parent.

Friday, July 25, 2014

The Special Needs Blogger Weekend Link-up: Here for your reading pleasure

It's the Special Needs Blogger Weekend Link-up. You know what to do.

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Better Than It Used To Be

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, July 24, 2014

What I think when I watch him sleep

If I turn on the hall light outside the kids' rooms, it sheds enough light to let me stand in their rooms beside their beds and watch them sleeping. Stalker Mom (me) does this every once in a while, especially after long, hard days when I need an infusion of peace in my brain. Not to mention, cuteness.

There is something magical about watching the kids sleep. Mine look pretty much like they did when they were babies. Max has always stuck out his lower lip, Sabrina likes to keep her mouth open. She also does this sprawl, taking up most of the crib as a baby and now, her bed. She definitely inherited the bed hog gene from Dave. 

I see Max doing stuff in his sleep that he doesn't do when he's wake. For one, his mouth is closed. It's often open in real life, because of weak oral-motor muscles. It's the opposite with his hands, which are often clenched during the daytime and relaxed at night. His muscles used to be fisted all the time when he was a baby. We knew that Max was at risk for cerebral palsy, and that tightness was one of the signs. When Dave and I walked around the mall with Baby Max, we'd check out the other babies' hands to see if they were clenched. 

Sometimes, I'll snap photos of the kids. Always, I steal kisses. With Max, I'll sit down on the edge of his bed and hold one of his hands, marveling at how loose it feels and that it's still deliciously chubby, with dimples where knuckles should be. I'll ponder his lashes; why is it that boys always get those impossibly long, lush kind? I'll wonder what he's dreaming of—fire trucks, perhaps, or gigantic bowls of chocolate ice-cream with hot fudge. Does he speak words in his dreams that he can't yet say in real life? His breathing is slow and regular, and I always feel so grateful for that. Whatever his physical challenges may be, he sleeps deep, as kids do. 

I know the kids' sleep faces all too well: For years, both of them have slept in our bed on and off. When Max was a newborn, it was for safety reasons. We were so scared he was going to have more seizures when we brought him home from NICU, and so he slept between us, with me regularly waking up and putting a hand on his chest to make sure he was breathing OK. 

Dave and I felt justified keeping Max in our bed because he needed our eyes on him, as verified when he had a grand mal seizure at one and a half years old. He woke up burning hot, then a leg twitched, and then suddenly his entire body was convulsing. I've wondered what would have happened to Max if he were in his crib, alone, and we hadn't seen the seizure, although it's not a question I ever want an answer to.

Very little wakes Sabrina up. If she senses me kissing her, she just sighs and flops over. But once in a while Max will open an eye and give me a smile. I'll feel a little guilty for disturbing his sleep but, oh, that sleepy smile. He might murmur "ire-ahn" and I'll say, softly, "Yes, you're going to be a fireman when you grow up." Then I'll tuck the covers around him, kiss his cheek and slink out, Stalker Mom retreating. 

Years ago, writer Ayelet Waldman stirred up controversy with an essay in which she admitted she loved her husband more than her children. I never understood that piece, because I feel a wholly different kind of love for the children than I do for Dave. It pulsates through me as I'm in their darkened rooms, a fierce, protective love that makes me yearn to always keep them as safe as they are, snug in their beds.

Tuesday, July 22, 2014

Good summer fun: a reading under the stars party

Sunday night, to celebrate Sabrina's departure for camp and summer in general, we did a Reading Under The Stars party with the kids. It's the theme of this year's Scholastic Summer Reading Challenge; I'm one their sponsored bloggers. The evening was powered by the Eveready flashlight and battery people, books, fireflies and, of course, snacks.

The thing about nighttime reading at our house is that it's part of an ancient routine: snack, bath, read in bed. Same as with most families, right? It's never occurred to me to break out, but the second I told the kids we were going to read in the backyard, they got really excited.

There was a minor battle fought in the kitchen over what types of snacks to bring. Now, if I was a certain kind of mom I could have baked star-shaped cookies or made granola bars in the shape of the moon or something like that, but I am the kind of mom who just barely manages to get to the dollar store to pick up glow sticks. And so, an assortment of crackers it was!

Sabrina brought out Little House in the Big Woods; she's been making her way through The Little House on the Prairie series, and is really testing my knowledge about the workings of guns. "Mommy, what's a ramrod?" she'll ask. "Mommy, what's a cap?" I'm not too nervous about this fascination. Max, meanwhile, is all about books about firefighters. Sadly, he was not into My Mom Is A Firefighter, which I just got for him. This is because, I think, he is the only one in our family who is allowed to be a firefighter when he grows up.

The one thing that kept distracting the kids from reading: fireflies! It's one thing to sit on your deck and watch them, but it's a whole other story to lie on the grass in the gorgeous calm of the dusk and observe them in all their glowy glory. Or to get up and run around your yard screaming "I'M GOING TO GET ONE!" as Sabrina did. She shared her find with Max, except as it turns out he didn't love having a firefly crawl up his sleeve. Who knew.

The kids sat quietly and read for a while. We've lived in our house for eleven years, and I don't think we've ever sat on the lawn in the dark. It really did feel magical. And it was a reminder to break out of routine more often. So next week, at bedtime, we are all flying off to Tahiti! He he he. Seriously, anything that gets the kids psyched to read is awesome. Sabrina's come a long ways since that time years ago when she stopped my heart by asking, "What is the point of fiction?" Max's reading is coming along, and as long as there's a firefighter involved (other than a mom firefighter), he's into it.

The night would have not been complete without scary flashlight faces. And so, we did them, before we packed up and headed back inside to the familiar world of bedtime routines, feeling like we'd just been on some great adventure...right in our own backyard.

 You can still get the kids started on the Summer Reading Challenge—it goes through September 5, 2014.
 Check out the Summer Reading Challenge board on Pinterest
 Check out the Summer Reading Challenge playlist on YouTube
 Follow the hashtag #SummerReading on social media

Thanks again to Scholastic for including Love That Max in their sponsored campaign for the Summer Reading Challenge.

A not-sad goodbye

Sabrina's doing a stint at an overnight camp, and I've wondered if Max would miss her. I know how much I'm going to, so I sat down to write a little card for her to tuck in her backpack and open when she arrived. Max walked over and asked to use the pen. He wrote:

"Fireman Max"
One thing I'm loving about the firefighter phase is that he's now writing a longer name; "Max" is a measly three letters but "Fireman Max" gets him to write seven more. I thought it was very sweet that he was signing my note to Sabrina. 

"That's so nice, Fireman Max!" I gushed. 

Then he asked me to write:

"Max wants to be a fireman when he grows up."
Hmmm, interesting, I thought. Perhaps he's concerned that she is going to forget his job aspirations while she is away, and he wanted to make sure she remembered. Or perhaps he wanted her to show the note to her new friends, given how impressive it is to have a wannabe firefighter as a brother.

"Fireman Max, I love that you're giving Sabrina a card!" I said.

Max looked at me curiously. "No!" he said. "Mine!"

He grabbed the card and trotted off to his room.

He put the card on top of his firefighter book collection, next to his firefighter suit and hat

And that was that. I picked up another card and wrote Sabrina a note that was only slightly more filled with feeling. 

"Max, are you going to miss me?" Sabrina asked a little later, when the two of them were in her room.

"Ee-yah!" ["Yeah!"] he said, a little too enthusiastically.

I know exactly what he's thinking: MINE! MY PARENTS ARE GOING TO BE ALL MINE!

So amused by how typical the sibling rivalry is in this family.

Monday, July 21, 2014

Better than it used to be

"It's amazing—we had a family dinner and a movie night out," Dave said as we all drove home at 9:00 last night. We were both incredulous.

Max has been planning to see Planes Fire And Rescue for months now. He had me write the opening date, July 18, on our kitchen wall calendar. He kept telling me he was going to see it at our local movie theater, the only indoor theater where he's ever seen movies (starting with Monsters University last July). Unfortunately, the movie isn't coming to our theater till later this month. Max said he'd wait.

The fact that Max is game to even see a movie in a theater is still a thrill. That's one of the awesome things about Max's maturity: Dave and I know how far he's come, and it makes even the most ordinary family activities that much more incredible.

Starting with dinner. Max is on a sushi kick. And he not only wants to go out and have sushi, he wants to try new restaurants. This from a kid who for years would only go to our local diner and only if he could have the booth in the back, by the bathroom. The waitresses used to save it for us.

So we went to a new sushi place. It was right next to an AMC. Max asked Dave if Planes Fire And Rescue was playing there and yes, it was, in a couple of hours. I asked Max if he wanted to go check out the theater. He asked if we had headphones, but no, we didn't. He went in, anyway. He posed in front of the big promotional sign. I asked the guy taking tickets if Max could just peek into the theater, number three, and he said OK.

Max poked his head in. Another movie was playing. He scoped the theater out and seemed satisfied; the noise level wasn't too loud. I asked if we should buy tickets. "YES!" he said. Dave got four (and asked if we could get a refund, if necessary).

We went off to have sushi. Max downed his avocado roll, dunked in miso soup, and kept asking if it was time to see the movie.

Even after Max started venturing into different restaurants, it was hard to keep him at the table once he'd finished eating. Last night, he finished and when he stood to leave we pointed out that the rest of us  weren't finished. He sat down again. Then asked if it was time yet to leave.

Finally, it was movie time. Max chose to sit in the last row of the theater. Because he's only ever seen indoor movies with me, he wanted me to sit next to him and asked Dave and Sabrina to sit somewhere else. That was fine with them.

So Max and I watched the movie, him with his Fireman Max hat on, as usual. He was mesmerized; the plot's about a plane that trains to become a firefighter, like it was written for him or something. Twice, he stood and looked way up at the projector, fascinated. A bunch of times, he'd turn to me and remind me that he was going to be a firefighter, too. I was a far more engaging companion than Dave, who took a nap during the movie, Sabrina reported en route home.

I sat in that theater and thought about those times when we tried to get Max to go to movies, and he'd screech if we even set foot inside the lobby. I thought about last summer, when he stood in the back of the theater the entire time, earphones firmly on, afraid to sit down. I held his hand, still plump with dimpled knuckles, and it was so relaxed. Max's muscles loosen up when he's really and truly immersed in something.

I watched Max watching the movie and felt glad that he's enjoying more activities than he used to. I felt happy that we're able to do more stuff as a family. It's all relative; life with Max is so much easier than it used to be. And knowing that makes our present that much more enjoyable.

I do this fairly often, reflecting on how much things have changed. I'll watch Max feeding himself and think of all the years when we fed him every meal. Max asks to go to the bathroom as we're running errands and I'll picture us changing his pull-up in the open trunk of the minivan. Max says a word or picks up something or walks up the stairs and I picture when he could not.

Who knows what the future will bring. I can't control that—not making the joys happen any sooner than they're meant to, or heading off the challenges. I'm celebrating that the past is just that. And I'm savoring the here and now, just like my Max.

Friday, July 18, 2014

The Special Needs Blogger Weekend Link-up: It's inclusive

It's the Special Needs Blogger Weekend Link-up, open to anyone who writes about disability, parent or not. Share a recent favorite post! Heck, share two.

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Have You Heard Me Sing Let It Go?

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, July 17, 2014

Let It Go, like you've never heard it sung

For months now, I've heard kids singing Let It Go: in the mall sitting area, at birthday parties, at Girl Scout events. The little girls always sound so adorable when they belt out "Can't hold it back anymore!" I never get tired of hearing them or, of course, Idina Menzel.

Max isn't a kid who bursts into spontaneous song; it's not in his repertoire of abilities. But for years now, he's gotten music therapy, and he's been known to sing words he can't yet speak. The therapists have put Max's obsessions to good use—they've created sing-along songs about Lightning McQueen, the color purple, a Disney Cruise we went on and his beloved Cars 2 piƱata.

Max's current music therapist, Amanda, has been trying new songs with him. I'm usually at the office when she's at the house, but she shares videos. When I got home from work one day and opened an email from her, holy wow, there was Max singing Let It Go. With feeling.

Some people might listen and think that Max is just "trying" to sing.

To them I'd say, change your definition of singing.

A few weeks ago, I was in my bedroom on a Saturday morning and heard singing coming from downstairs. It was Max, singing along to the YouTube video of Let It Go. That was the first time I ever heard him singing on his own, and if I were in a Disney movie there would have been a swirl of glitter surrounding me, in my ebullience, and perhaps bluebirds dancing around my head. Oh, wait, that's Snow White.

Then his teacher sent an email from school saying that Max was loving the Frozen karaoke app another student had on her iPad. I downloaded it. And, whoa: The singing floodgates have opened up.

Max now sits and sings along to all the songs from Frozen, as often as he can. Sometimes, both kids hang on the couch and sing together, then they play back the recordings and giggle.

Max loves to sit in his room and sing karaoke Let It Go. He's been singing for his teacher and therapists at school. If you visited our house, he'd ask you to sit next to him on the couch so he could sing Let It Go for you.

Can't hold him back anymore. 

Wednesday, July 16, 2014

8 ways to include kids with disabilities in programs, events, classes, camps, wherever

As parents of kids with disabilities, we want our kids to enjoy the same activities that other kids do—but in reality, it doesn't always happen. My son has been turned away from programs and recreational activities, as have the children of many distressed parents I hear from. So I asked the CEO of Kids Included Together (KIT) Torrie Dunlap, to share a practical list with how-tos. This nonprofit teaches inclusive models to YMCAs, Boys & Girls Clubs, city recreation programs and preschools, among others. Serving more than 20,000 people a year, KIT has worked in 45 states and 10 countries. Clearly, they know what they are doing. 

If you are a children's program or event coordinator, camp director, coach or teacher, please, take a few minutes to read this—especially if you have hesitated to accommodate a child with disabilities. 

One recent afternoon I was scrolling through Instagram, hoping to find new photos of my niece and nephew. What I did see was a captivating 15-second video of a boy who looked to be about ten years old beatboxing like a boss. It was so good that I let it repeat several times. The third time I watched it, I realized this talented guy has Down syndrome. I looked at the comments and saw that he had learned to beatbox that day at summer theater camp. Fifteen years ago, KIT began providing inclusion training for this particular theater company, and they remain one of our local star programs. I grabbed my iPhone and ran around the KIT offices holding up the video and telling everyone, “What you do makes a difference!”

Glee star Lauren Potter with Torrie Dunlap, the CEO of KIT
Over the years, I have seen countless organizations and people grapple with the idea of including children with disabilities in their programs. There are attitudinal barriers like fear and lack of experience with people with disabilities. There are also institutional barriers like lack of staff training and lack of support from program leadership, and worries including cost, liability, safety and the concern that inclusion will diminish the quality of the experience for kids without disabilities.

It really isn’t as hard as you think. 

Sure, some kids have significant disabilities and major challenges in life, but in the context of programs, and with the right supports, most children do just fine. Kids are much more alike than they are different. They all come to a program or class to have fun, to make friends and to learn. Commit to inclusion not because it is the law, but because it makes your program better—for every kid. It’s true. The research shows that including kids with disabilities in your programs is good for them, but it also benefits the kids without disabilities.

Here are eight things to keep in mind for creating an environment where everyone is welcome:

Get into the inclusion mindset

Inclusion is first and foremost a philosophy that says that everyone belongs. Inclusion means that every child has value and has something to contribute. When you adopt an inclusive mindset, barriers are easier to overcome, solutions are more readily available, and the whole feeling of the program evolves to one of community. 

Create a partnership with the family

In the child’s parent or caregiver you have access to the absolute expert on the child. They know the child’s likes and dislikes, his special talents, what triggers challenging behavior and what can be done to calm him when necessary. In your job as a camp director, after-school program leader, ballet teacher or soccer coach you have the knowledge of your subject and you know how to teach groups of kids. When you put parents' knowledge together with yours, BAM! You have some serious super-powers. Although not every parent is going to be willing or able to give a lot of support, by being open and inviting a team approach, you create the possibility. Remember, the parent wants this to work too. They are often very eager and willing to help, because they know your program would be an awesome experience for their child.

Understand that small changes can have a big impact

Many accommodations are easy and inexpensive. One example is creating visual supports that work well for children with autism and other disabilities, like a program schedule that uses pictures instead of (or in addition to) words. Before each activity show the schedule, and point to the picture of what is happening next. You can also make a small choice board with photos or images of different options for snack or free play activities, which can work well for children without verbal language. Another small change that makes a big difference is working on the transitions in your program. Moving from one activity to another, or from one location to another (like outside play to inside for snack) can be very stressful for children. When children feel stress or anxiety they often show you through their behavior. If you can put some structure to the unstructured time, most of the children in a program will feel more relaxed. The big secret about inclusion is that what works for kids with disabilities works for kids without disabilities, and by practicing inclusion you make your whole program quality better.

Don't worry—it's OK for everyone to participate differently

At KIT we’ve worked with a wide variety of types of programs including museums, zoos, preschools and even a farm. Across the board we tell them, “It is OK if everyone participates differently.” In 2007 we were working with a children’s theater company in Maryland that came to us with the challenge of how to include a child who used a wheelchair in their dance classes. What could they do? We asked them to look through the lens of the child’s interest in the dance class. Why did she want to be there? In this case it was a child who loved music and was fascinated by movement, even if learning to pirouette wasn’t in the cards for her. They discovered that she could be the class “DJ” and play the music, could count off the four beats to start the dance and could use her arms to learn some of the moves when she wanted. This young girl got something valuable out of this experience, and it didn’t need to be what the other children got out of it. She was engaging with her love of dance, and everyone was happy.

Play to strengths

When a parent shares a child’s strengths, talents and interests, it’s the most helpful information you can have in your pocket. I had a student in my theater programs whose biggest love in life was SpongeBob. When I could find ways to include SpongeBob in the scenes we were doing, he was happy and engaged. SpongeBob making an appearance in Shakespeare’s A Midsummer Night's Dream? Sure, why not! Kids often have a special interest or talent that you can incorporate into the program. In a Boys & Girls Club that we worked with, they were struggling to serve a 9-year-old with autism. He was having trouble engaging with the other kids and there was nothing in the program that would hold his interest for very long. When we found out that his special interest was weather patterns (actually, his talking about weather all day was annoying the other kids), we found a way to use it. The club staff created a daily news program and Tommy became the weatherman. The news program became the most popular activity at the club, and now Tommy was seen in a new way by the kids; for his ability, and not his disability.

Help facilitate relationships

As humans we are social creatures. We need and want to connect. This is the same for children with disabilities, even those who seem like they don’t. Tommy was having trouble engaging with the other kids, and it wasn’t because he didn’t want to, it was because he didn’t know how. The news program allowed him to work collaboratively, and not competitively, with other kids which was a great start. Then the program staff could teach him the skills to engage with the other kids. He learned how to approach them, and how to invite them to play a game. The other kids learned how to say, “Please stop. I don’t like that” when he tapped on their shoulders too strongly to get their attention. They learned how to help him take turns in games like Connect Four. In an after school program in Northern California, a 12 year-old with autism had been sitting at a table every afternoon coloring by himself. The program thought this is what he wanted to do, and they left him alone. After learning about inclusion they began to help him learn to connect with others in the program. When his mom came to pick him up one day and saw him playing four square with three other children on the playground, she told the program leader “This is the first time I have seen him play with other kids."

Know that everyone benefits from inclusion

In the beginning, you think it’s about the kids with disabilities. You think you are helping them or helping their families. But once you start practicing inclusion, you realize that everyone is getting something out of the experience. It’s not really about the kids with disabilities, or their families, it’s about the community as a whole. Your program becomes a place where everyone can thrive. Where everyone learns more about themselves, where they explore new talents and interests, where people who are different learn to get along, and where they learn that they have more in common with others than they thought they did. Parents report that the friendships their children are making with children with disabilities affect their other relationships in a positive way. They become more empathic, patient and accepting of differences. The benefits of inclusion extend out into the community. Our long-time partner the San Diego Zoo recently received a special commendation from the City Council for their efforts to ensure that children with disabilities are included in the education programs.

Celebrate successes!

I am not saying that meeting the needs of all kinds of kids is always easy. I know it’s not. I know how hard your job is to begin with, even without a child with autism, Down syndrome, cerebral palsy or other disability in your class. But not only is it worth it, it is necessary. Our world needs to be a place where everyone belongs. Kids need to know that everyone has value, and you show them that by treating everyone in your program equally, and with great compassion and love. Sometimes it will be hard, but you will have many successes. Share them with the child’s family and with your program team (“Guess what—Juan Carlos used words to ask for snack today!”). I had a mother come to me in tears once when she received the summer camp group photo we had taken. She told me, “It's the first time I have ever seen my son smile in a photo.” This is the opportunity we have. This is what we can create. So try not to worry, try not to be afraid. You probably got into this field because you love nurturing children and helping them grow. You can do this. And you have no idea what change you can create for the world by being open to the possibility of inclusion.

Kids Included Together stands ready to help! Click here for a free trial to our Online Learning Center with a ton of free tip sheets, instructional videos and a couple of free learning modules.  

Top and bottom photos courtesy of KIT/photo of Potter and Dunlap: David Manning

Tuesday, July 15, 2014

The shocking realities of raising children with disabilities, and why society needs to know

If you would have spotted me and the kids when we hit a sushi restaurant this weekend, this is what you would have seen. I sat next to Max, tucked two cloth napkins into his shirt collar and spread two on his lap. I crumbled his avocado rolls and plopped them into his miso soup, because they're easier for him to eat that way. Then Max did his best to hold the porcelain spoon. He insists on using it, rather than one of the adaptive spoons I tote in my purse, but he kept dropping it because the narrow handle is tricky to grasp. Meanwhile, the napkins got sopping wet. "Do you want help?" I asked, finally. "Yes!" he said. Then I fed Max the rest of his meal.

If I didn't have a child with cerebral palsy, I might glance curiously in a restaurant, too. It's unusual to see an 11-year-old kid being spoon fed by a parent. This partly explains the ongoing buzz about NPR's recent story on two aging parents carrying for their teen with cerebral palsy. Written by Katie Orr, Destined to be Caregivers did not hold back on the realities of parents James and Judy Lee and 16-year-old Justin: the diaper changes, the daily stretching of his muscles, the regular flow of therapists in and out of their home, him sleeping in their bed so they can keep an eye out for seizures.

What riled some people up was a photo of James carrying his son, naked except for a diaper. Photographer Andrew Nixon summed up the response on Twitter:

A lot of us, especially parents of children with disabilities, saw only love in the photo. Some noted these parents "unconditional" and "selfless" care for their son. As commenter Christine Hoang said on NPR's Facebook post, "Many people are focusing on the son's undergarment. When I saw the picture, my focus was on the father's face. He appears loving, gentle and even perhaps happy. He and his wife love their son, and in the midst of their hardships and sacrifice, they also find the blessing and the joy in behind is parents—and that is the essence of good parenting." 

Some suggested they would never "force" a child to keep living that way. This is a whole other story; people often fail to understand that these are our children, with their unique needs, and we love and care for them because we are their parents and that is what parents do. Judy Lee jumped into the comments on, noting that Justin is alert and happy, enjoys his friends, music, TV and swimming and many other parts of life. As for those people who thought they should "let him go," she said it "would be nothing short of neglect and murder. He's a healthy young man, for which we are eternally grateful. His life is cherished...."

And then, there were those who objected to that photo—a violation of Justin's privacy that compromised his respect and dignity, they said. They felt NPR could have chosen other photos. They wondered whether Justin would have wanted to run that photo. This from a society that is obsessed with reality TV, and all its invasive spectacles. 

James and Judy Lee were fully aware that a photographer was documenting their family. As he noted in a post NPR put up about the photo, "We tried to get a wide range of experiences that the family went through. And part of that is bathing your son, because he can't do it himself. The Lees were very comfortable being photographed.... His parents demonstrated pretty thoroughly that they really have his best interests at heart.... I think the photo served the purpose of showing a father taking care of his son. If it was just Justin, I think that would have been disrespectful. It would have crossed that line."

The truth is, the realities of raising a child with physical challenges are often not pretty, however lovingly they are handled. They involve bodily functions and fluids that people typically associate with infants and the elderly: bed wetting, butt wiping, drooling, spoon feeding, sponge bathing. There are plenty of people who are already uncomfortable with people who are disabled; these details may make them really squirm, perhaps why some of them hyper-focused on that photo. If there was a shot of Justin being carried, say, on the beach in swim trunks, they probably still would have felt unnerved. 

Most of the online comments I read from parents of kids with special needs pointed out the same thing: People don't know what's it's like to care for a person with disabilities. As mom Ellie Lawrence noted on the Parenting Special Needs Magazine Facebook page, "I think some people...are afraid of knowing what we as parents have to do.... I was giving some water to my son through his g-tube in public one day and all you could see was his tube, his shirt covered the rest, and a woman said 'That should be done in the bathroom or at home' and before I could say anything the lady's own child said, 'Mom he's thirsty, I don't drink in the bathroom, why should he?' Out of the mouth of babes." 

In agreeing to participate in the NPR story, the Lees did what other parents of kids with special needs regularly do through blogging and social media: let people in on their lives. Although I can't speak to why these parents did this, I'm betting they believed that giving others a glimpse into their daily existence would be in the best interests of their son. Perhaps they want to raise awareness about the dearth of financial assistance and resources for people with disabilities. Judy Lee receives about $10 an hour to care for her son, as part of California's In-Home Supportive Services. This month, proposed budget cuts could slash the amount of hours for which she receives compensation in half.

Sharing our families' lives is one way to get a discussion going and bring about change. Revealing what goes on behind the doors of our homes is hardly disgraceful; what's disgraceful is for kids and adults with disabilities to remain a forgotten part of society.  

Image: Screen grab/YouTube video by James Lee

Monday, July 14, 2014

Tips to make outings easier for kids with autism (and other kids too)

Running errands or going on outings with a child who has autism or other special needs may result in tears (theirs and yours). Back when Max was little, a trip to the local diner was typically a total disaster, with him running out of there shrieking. I know how hard it can be, so I was glad to come upon this video with tips for errands and outings—grocery shopping, restaurants, the mall, the zoo—for kids with autism from psychologist Sharon Hollander, PsyD, at Children's Specialized Hospital. It's the largest provider of autism services in New Jersey, and a leader in early identification, research and effective treatments.

The video is part of the Real Life Tips for Kids With Autism series, which includes 26 short videos; you can browse them here. Shout out to Kohl's, for helping to fund the vidoes through Kohl's Autism Awareness, part of the Kohl's Cares program. Now I love that store even more.

Image: Flickr/meltsley

Friday, July 11, 2014

The Special Needs Blogger Weekend Link-up is right here

It's your Special Needs Blogger Weekend Link-up.

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: What's Up With All The Back-To-School Ads?

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, July 10, 2014

Two different foot sizes, one freakout, one happy ending

In an interesting turn of life events, Max now has two different size feet. As in, two whole sizes. Left, 4&1/2, right, 2&1/2. This, I know now, is not uncommon with children who have cerebral palsy. Because they don't already have enough to deal with and neither do their parents.

First, Max got new orthotics, purple. Then I had to find shoes to fit. Max has long worn Hatchbacks. I called the company and a rep said they might be able to sell me samples in two sizes, except it turns out they don't even make shoes for big kids.

Nordstrom is known for its customer service, and for being willing to sell two shoes in different sizes (and only charging for one pair). I took Max in for a fitting. The staffer helping us said we needed an Extra Extra Wide pair of sneakers, then clicked around on her phone and could not find a manufacturer that had them. Max had been amazingly patient but after twenty minutes, he wanted out. I didn't blame him. Who wants to sit around in a shoe department?

The woman said she'd call to follow up, and didn't. I got in touch with the store manager. The shoe department manager called, and told me she would get in some sneakers. When I asked if they would be extra extra wide, she didn't know what I was talking about, which is when I ripped my hair out suggested she speak with the woman who had measured Max's foot. Then I got off the phone and shouted into a pillow. (Vastly cheaper than therapy.) (Although what kind of therapy exists for parents of kids with different size feet?) (Please, God, don't let him ever let him like Ferragamos.)

I told my friend Peggy what was going on. "It's never easy, is it?" she said. Some days, it definitely feels that way.

In the end, it was New Balance to the rescue, model 990v3. Turns out Max only needs an Extra Wide. I took out the soles, and the orthotics easily fit in.

Next up, the fun part: Giving away the sneaks Max didn't need. Options include The National Odd Shoe Exchange and the CHASA Hemiplegic Cerebral Palsy Shoe Exchange on Facebook, where you find postings like this:

I posted, parents responded, I shipped the sneakers out. It felt good. If Max is going to have two different size feet, at least he can have sole mates to share them with.

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