Thursday, March 31, 2016

Heads up, Hollywood, this isn't funny

There's an ad out today featuring Donald Trump and Robert Downey Jr., and it's got nothing to do with politics and everything to do with respect.

You might be familiar with Tropic Thunder, the 2008 comedy starring Ben Stiller, Jack Black and Robert Downey Jr; Stiller co-wrote the screenplay, too. It follows a group of actors making a movie about the Vietnam War. In it, the character Kirk (played by Downey Jr.) gives Chuck (Stiller) advice about a film he was in, Simple Jack, which centers around a character with intellectual disability (ID). Chuck usually plays action heroes, but decided to stretch his range and portray a man with ID in hopes it would be award-winning material. The movie was a flop; as Kirk explains it, he overdid the acting. 

The scene sparked, you guessed it, the catchphrase "Never go full retard" and a meme that won't die. There are any number of t-shirts you can get emblazoned with the phrase.

Hollywood, comedians and a whole lot of people on Twitter thinks the word "retard" is funny. It crops up in movies on occasion—Ted, The Change-Up, The Descendants, Napoleon Dynamite. The people cringing in the movie theater, the people who speak out, include those who have loved ones with ID, disability advocates and the Special Olympics, which started the Spread the Word to End The Word campaign.

Stiller's never apologized. He defended the Tropic Thunder scene by saying that disability groups that called for a boycott of the film missed the point. "It's sort of edgy territory, but we felt that as long as the focus was on the actors who were trying to do something to be taken seriously that's gone too far or wrong, that was where the humor would come from," he told MTV News.

In related news, last fall Donald Trump came under fire for seemingly mocking a reporter with a disability. At a rally in South Carolina, he looked to be mimicking New York Times reporter Serge Kovaleski, who has a condition that affects his joint movements.

The incident made headlines and appalled many. Trump appeared to be stooping to a new low in making fun of someone with a physical disability—going, as ABC News put it, "where no presidential candidate has gone before." Trump later denied it, claiming he had never met the reporter, which Kovaleski has disputed. At a subsequent rally Trump noted that he was merely being "very expressive" when he was talking.

The reaction to Trump left an impression on Hannah Jacobs, the mother of a young woman with intellectual disability, an advocate and president and founder of the nonprofit Family Member (I'm on their advisory board). "It struck me as hypocritical that people became so incensed by Trump mocking the reporter, yet never spoke out when people with disabilities were mocked and marginalized in films or comedy routines," she says.

People are often quick to note they would never call someone with intellectual disability a "retard"  but see nothing wrong when the word is used in as a synonym for stupid, pathetic and loser—perpetuating the idea that those with ID are stupid, pathetic losers. It's a distinction that is lost on a whole lot of people, including Hollywood powers-that-be.

And so when Family Member landed a grant, Hannah made an ad. As of today, it's going to be running in the Hollywood Reporter for five weeks. Hannah seeks to engage screenwriters, actors, comedians and members of the entertainment community. Hopefully, it will help them better understand that mocking disability in any form is no joke. 

There are infinite ways to be funny on film, as Ben Stiller has shown us throughout his career—but there's no reason to do it at the expense of people with intellectual disability.

More on this:

Would you call my child a retard?

If you ask people not to use the word retard

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

20 reasons to respect my child with special needs

Do you get why this word hurts so much?

Wednesday, March 30, 2016

Why I love this dirty bowl

I love this dirty bowl.


Because Max put it on the counter with his own two hands.


Because last night at around 7:00, Ben was hungry and Max was tired but before he could go to sleep, he needed his anti-seizure medicine. So as I held Ben I spooned some chocolate yogurt into a bowl, put a square of Dycem on the table (tacky stuff that helps keep bowls from moving around as Max eats), placed the bowl on it, opened the packet of compounded medicine and sprinkled it in, settled Max into his chair, put a bib on him to catch dribbles then went off to the living room with Ben to give him a bottle.

"I'm done!" Max announced from the kitchen a few minutes later. That was good, since sometimes he has trouble spooning up the last of the yogurt on his own.

"Honey, I can't help you right now so just hang on a few minutes," I said.
Usually, I would remove the bib, clean Max's face and bring the bowl to the sink. He otherwise uses plastic or melamine bowls—including adaptive ones with deep concave sides that enable him to better spoon up food— but I find that the yogurt melts faster in them and gets harder to spoon up, so we use a porcelain bowl for it.

A couple of minutes later, I heard water running in the kitchen. Hmmm, I thought. Wonder what he's up to.

Then Max walked in, and his face was mostly clean except for some yogurt on his chin, which I pointed out to him. Max walked into the bathroom and again, I heard the water run. When he came back, his face was fully clean.

Wow. Just, wow. He'd never done that before.

Maybe I need to leave him to his own devices more often, I thought.

I figured Ben would have a good influence on Max (and vice versa). But I hadn't realized that because I'd sometimes have to focus my attention on Ben instead of Max, it could and would force Max to be more independent.

I also realized that I needed to get off Max auto-pilot. I am too used to doing things for him, and need to step back where I can. Max has made some advances in fine-motor skills in recent months. Last year around this time, I was unnerved one night when he couldn't open the knob of his bedroom door. And now, he can. He continues to open the back door for me and Dave when we get home.

Then I walked into the kitchen, and found the bowl sitting on our counter, with the bib and piece of Dycem in the sink. Picking up a porcelain bowl with two hands is a big deal for Max and he figured he might not be able to safely transfer it into the sink, so he wisely left it on the counter.

And that's why I love that dirty bowl.

Tuesday, March 29, 2016

Don't underestimate the humor of a child with special needs

The photographer who will be shooting Max's bar mitzvah stopped by the other day to go over stuff.

"Should I take pictures of Daddy?" she asked.

"Yes!" said Max.

"Mommy?" she asked

"Yes!" Max acknowledged.


"NO!" said Max, with a big smile on his face. I had to laugh. He was joking—OK, half-joking since Sabrina is obnoxious to him lately. Sometimes, after she's been bugging him, he'll walk around the house and say "New sister!" As in, he would like a replacement.

Max has a great sense of humor. This will not come as a surprise to other parents of children with special needs. But I know it often astounds people who aren't familiar with kids who have special needs. I used to be one of them. 

Before I had Max, I didn't have any children with special needs in my life. When I saw them in public, what I mostly noticed was the disability, and what I mostly felt was pity. Obviously, having Max wholly changed my perspective, one reason I share about him here—I hope others can see what it took me too long to know. Sometimes, people who don't know Max well remark, "Wow, he has a sense of humor!" I get why they this is surprising to them. I wish it weren't.

It isn't just Sabrina that Max laughingly teases. I misplace my iPhone approximately every five minutes, much to the amusement of everyone in my family. "Max, do you know where my phone is?" I asked the other day. He pointed to it. It was in my hand, along with some papers I was carrying. "Ha ha ha!" he announced, with perfect comical timing.

I can tease Max and he knows I'm being funny. When Dave got Max a chocolate milkshake the other day and left it in the fridge, I grabbed it and said, "Max! Thank you so much for the milkshake!" and he cracked up as he said "Noooooo!" When he is being stubborn about using his iPad to communicate and insists on repeatedly articulating a phrase, even though we can't understand it, he laughs when we purposefully make ridiculous guesses (see: "Want to buy a monkey?")

These days, Max appreciates the ridiculous, the silly and the gross. My Facebook friend Stacy J. and I were exchanging notes about this the other day. She mentioned that her son, who is severely disabled and doesn't see well, likes to kick his baby sister lightly and crack up at fart noises, as Max does.

Max doesn't yet do sarcasm. Although Sabrina has enough of it lately for the two of them, I hope he someday has a handle on that. He is, however a master of OMG!, and knows just when to say it for laughs:

Me: "Dave, your mom is coming over soon and I haven't even taken a shower yet!"
Max: "Oh m geeee!"

Back to Sabrina's presence in our family photos, and why I knew Max really was joking. Later that day, he did a practice session with the music teacher for his bar mitzvah. They got to the last song, which he's singing with Sabrina only she was nowhere to be found. Max walked around shouting for her and eventually she emerged from the basement, her preferred hiding spot. They sang it together loudly, Max grinning the whole time. 

Monday, March 28, 2016

Do parents have the right to stunt the growth of children with severe disabilities?

"I can't imagine the emotion, physical, and spiritual strength of the families [who] have to make these choices," read the comment. That was one reaction to the article in this week's New York Times Magazine about parents who chemically stunt the growth of children with severe disabilities. Selfish, abusive, barbaric, sickening: Those were other reactions, words that came from parents of children with disabilities. Meanwhile, adults with disability were outraged. "The humanity of disabled people is apparently secondary to the convenience of those around us," tweeted Lei Wiley-Mydske.

The article, Small Comfort, is by Genevieve Field, a colleague from my days as an editor at Glamour magazine. It's a complex topic, and I found her piece to be lucidly written, thought-provoking and disturbing. Adults in the disability community rightfully noted that people with disability should have been quoted; it seemed like the editors wished to focus more on families who supported the treatment than on philosophical discussions (per an author Q&A on Digg).

I'll attempt a summary: A small but growing number of parents of kids with severe disabilities are opting for growth-attenuation therapy. It consists of administering estrogen estradiol (done via injection, I believe), which speeds up the rate of skeletal maturation and drastically reduces a child's adult height. The younger a kid is when treatment starts—typically between ages 3 and 6—the shorter they'll end up. The children it is being done on are nonambulatory, with considerable intellectual disability.

Parents who have done the therapy said they didn't know how they would hold, lift, bathe and otherwise handle their children once they grew older. Additionally, they believed that keeping their children's height in check would allow them to continue to participate in family activities, outings and daily life as they get older.

The treatment first came to public attention in 2006, when JAMA Pediatrics published a case study  about a six-year-old girl who got GAD, along with a hysterectomy; her breast nodules were also removed. The parents of Ashley X, as she became known, started the website Pillow Angel to bring attention to the topic and offer parents a private forum for discussion. Now a teen, Ashley still has the cognition of an infant, her dad told The Guardian, along with the height and weight of a 9-year-old.

Adults with disability, advocates and others are horrified by the violation of the rights and freedom of persons with disability (PWD), and unnecessary bodily manipulation by a guardian. They note that laws were fought for, by families and the disability community alike, to stop the mistreatment and abuse of PWD. Alice Wong of the Disability Visibility Project tweeted, among other critiques, the need for more services and supports so parents wouldn't feel alone in raising a child with severe disability (although you can understand why the possibility of that down the road wouldn't matter much to a parent grappling with the decision now). The Director of Policy Rights at The Arc wrote, in response to the piece, "The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of a child with disability." Also troubling: There is no research on long-term effects of the treatment, and whether a smaller person receives better care.

Some point out that while the thought of caring for an older child with disabilities may seem seem overwhelming, circumstances can change. Genevieve interviewed Eva Kittay, a professor of philosophy who has a fortysomething child with cognitive and physical disabilities. Kittay spoke of the balance they now have, with her daughter in a residential school during the weekdays and at home on weekends. "You cannot halt things, keep them children," Kittay said. "You have to think about your family changing. You will have other needs. They will have other needs."

As the parent of a child with spastic cerebral palsy, I do understand the anxiety about caregiving. Lifting Max into our minivan, dressing him and helping him up when he trips and falls is real physical work—and his CP is considered mild. I can only imagine the challenges faced by parents of children with more severe physical disabilities. I am also not one to cast judgment on other special needs families. We may have commonalities but, ultimately, none of us have walked in the others' shoes. The scathing comments left by some people were disturbing. Most of the families I know do their best to make decisions they feel are right for their families. 

Still, I share some concerns touched on in the piece. As I read, I kept flashing back to Max's early years. At age three, he had started walking but had serious cognitive delays. We could not have known—nor could any expert have known—how that brain of his could and would flourish, scary MRI scans be damned. Raising Max has taught me to presume competence, a tenet that growth attenuation violates. 

Who's to say that a child with low cognitive function—the kind who this treatment is recommended for—won't progress? Who's to say what thoughts, wishes and desires circulate in the mind of a child who can't yet communicate them, yet being the operative word? Who's to say whether such a child could end up feeling like a prisoner in a body forced on her, much as people with intellectual disability may have felt decades ago when they were institutionalized?

I considered how this treatment could affect the way others view a person with disability. As it is, people often talk down to people with disability; I regularly see this with Max. It frustrates me when others address him in a baby-ish tone. Worse is when they talk about him as if he isn't even there. A person with disability who is made to always resemble a child will likely always be treated like one, no matter how they mature inside.

I thought, too, about the possibilities that technology may bring in assisting with caregiving for a person with severe disability. I've been amazed at the augmentative communication options that have cropped up in recent years; coming up, an app that will translate impaired speech. True, it's one thing to create a speech app and another to create a robot who could assist with dressing, carrying and lifting a person, but I'll bet that will happen. I've read, for instance, about robots being tested to do tasks including shaving and folding the laundry for people with disabilities. 

And then, I wondered and worried about the variety of parents considering the treatment. Over the years, I've encountered parents with a pretty old-school mindset about children with special needs. Why should a person who considers a child with disability to be someone who can't make contributions to the world, someone they consider a defective human being, be allowed to decide that child's fate? In who's best interest is this treatment, then?

Screen shot: Twitter/@nytimes

Friday, March 25, 2016

The Special Needs Blogger Weekend Link-up: Post, she said

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: Hey, ABC, about that new special needs family sitcom

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 24, 2016

Now I see what's amazing, not what's different

"Sabrina! Look at Max!"

We were at our temple last night for Purim, a holiday that commemorates the defeat of a plot by Haman to massacre Jews in 4th Century BCE Persia. The story is recorded in the book of Esther and every time Haman's name is read, people stomp and rattle clappers and graggers (noisemakers) to block out his name. It's also traditional for people to send each other food gifts, and wear costumes.

Sabrina dressed up as a referee, Max was YOU KNOW, Ben had his peapod costume but I didn't get a chance to stuff him into it since he fell asleep, and I went as a tired mom. Sabrina did not appreciate my "costume."

Ben as a peapod back in October. Yum.
Max had decided to walk down the long aisle in the sanctuary to the podium, where he stood and stared in fascination at the rabbi, who was dressed like Elvis . I was in awe of Max. The room was noisy, but he didn't care. There were a ton of people there, but he didn't care.

Some adults and kids were staring at him curiously, and I didn't care. 

Used to be that in settings like this, where there were a lot of other kids around, I would mainly notice how Max stood out from the other kids. Especially during his early years, when he wasn't yet walking or talking and the other kids his age at the temple, park, party, mall or wherever. As the years went by, I stopped comparing him to other kids and appreciated Max for who he was: Max

Last night, I watched Max in action. He wasn't into making a craft; instead, he wheeled Ben around and introduced him to people. When people said "Hi, Max!" he corrected them: "Fireman Max!" He downed pizza, with some help from me, and ice-cream cake. While Sabrina was off with her friends, Max, Ben and I took a tour of the preschool where Sabrina had gone. We met a couple with a baby and Max wanted to know when her birthday was, and also if she cried a lot like Ben does. In the sanctuary, Max giggled when people made noise as Haman's name was called, although he didn't want to rattle a gragger himself.

Max was charming. He was social. He was curious. He was all over the place, doing his own thing. A pack of boys his age ran by us as we walked around. I didn't get that old he's-not-one-of-them pang. All I saw was Max, having a great time.

Wednesday, March 23, 2016

This scary thing happened in my local moms Facebook group: A cautionary tale

"Did you hear about what happened to that mother in our Facebook group?" my friend asked me. She had stopped by to give me baby gear, and we were standing in the kitchen chatting.

"No, what happened?" I asked, never once suspecting what she would say.

A woman had joined our local mother's group. She'd also friended some mothers in it, including my pal. Some moms had friended her back, thinking that either she was new in town and looking to make connections or not quite remembering whether they knew her from someplace in real life.

When my friend saw her introductory note, photo and profile, she thought something seemed wrong. Her message was full of typos and bad grammar, and yet her picture was of a professional looking woman and her profile said she was some higher-up at a big company.

After she joined our group, this woman posted that she knew a great babysitter. She got a number of responses, and a mother hired that babysitter. That mother eventually realized the sitter had stolen a blank check, writen out a large sum to herself and cashed it.

It remains unclear whether the woman who posted in the Facebook group is the so-called sitter, or whether the sitter was an accomplice. In any case, it seemed like she had created a fake profile with the intent of getting jobs and infiltrating homes to steal. The incident was reported to the police.

The moms who moderate the group were profusely apologetic; they do their best to make sure people in it are legit. The group has been a lifeline—I've crowdsourced everything from Ben's gastric distress to sleep training, and gotten really helpful advice. And it will continue to be a vital community go-to for me. If you belong to a local Facebook group, you can understand how easy it is to instantly feel a sense of camaraderie with the people there and trust them. Especially when it's a parent group.

But this story is a sobering reminder that as awesome as local groups on Facebook can be, you have to use the same judgment you would in real life about interacting with people—even if a person has shared connections. This mom is lucky that stolen money is the worst thing that happened.

Tuesday, March 22, 2016

The words I don't understand, the words I do

I was working in our bedroom when Max got home from school yesterday. He came upstairs and told me something. I had no idea what he was saying. I asked him to say it again, then again. No luck. His iPad with the speech app was downstairs in his school bag, but Max didn't want to get it—he wanted me to understand what he was articulating.

This has been happening a lot lately. Max used to repeat a lot of the same phrases (like "I love purple!" and "Take me to the car wash!" and "Bowling is my favorite sport!" and "I want to be a fireman when I grow up!") But these days he's got a whole lot more to say, which means new words and new phrases, ones I can't always understand.

Still, Max has been making progress with speech. After last year's IEP, where his speech therapist noted—much to my alarm—that she didn't feel articulation should be a focus since she hadn't seen much improvement, it was very satisfying to read "Max demonstrates some improvement with the intelligibility of his speech over the past year" in this year's IEP draft. She noted that his sound inventory now included h, g, m, d and n, although inconsistently. Other people have been noticing that Max is sounding clearer, too.

Happily, Max's ability to communicate by typing has also been improving. When he realizes that Dave, me or Sabrina aren't getting what he's trying to tell us, and his iPad isn't around, he'll type out what he's saying on one of our phones. If he doesn't know how to spell a word, he'll approximate it. 

As it turns out, Max was informing me that he'd be cooking stuffed shells at school this week, his favorite dish. Over the weekend, we took a special trip to the supermarket to buy the pasta, which he promptly put in his book bag when we got home. He found a recipe online and sent it to his teacher. They do cooking in his class, but I am not entirely convinced Max didn't cook up a stuffed shells fantasy and drop some pretty big hints.

Sometimes, Max surprises us with his speech. This weekend I was taking a video of Ben loving his bouncer when Max did a videobomb and pronounced Ben's full name really clearly, the best we've heard yet. It was one of the only times I've ever heard him spontaneously say a "b."

Speech is one of Max's biggest challenges, and articulation advances are hard won—exactly why we get so giddy when they happen. Max is on his own timeline. He may be getting older, but he has as much potential as ever. We'll take every sound, every consonant, every phrase and every sentence as they come.

Monday, March 21, 2016

Hey, ABC, about that new special needs family sitcom: Don't let us down

Hey, ABC, people are buzzing about Speechless, your pilot centered around a family with a child who has special needs. The so-called comedy from writer Scott Silveri stars Minnie Driver as Maya, an "overbearing mother who moves her family from town to town in an effort to find the right school for her non-verbal son, JJ," according to TVLine

Deadline says that the family "is good at dealing with the challenges it faces and excellent at creating new ones." It also notes that Maya's "single-minded fight for her family can rub people the wrong way—sometimes people in the family itself—but it all stems from a loving intention."

Well, now. While it's breakthrough to have a sitcom about a special needs family, this isn't sounding like a very positive portrayal, ABC. Still, I'm willing to give you the benefit of the doubt. I speak for a lot of parents of kids with special needs when I express my hopes for this potential series.

We hope you don't make special needs moms out to be obnoxious crazy ladies.

Like any parents, we want the best for our children. But we often have to be pushy—because of old-school viewpoints about kids with special needs, because of budget concerns, because of prejudice, because of ignorance or because sometimes only we see our child's potential. Even in settings where you wouldn't think we have to go into overdrive, such as education meetings that determine our children's education goals, we have to be pushy. As a mom noted on a thread on the Facebook page of my friend Hallie, who has a daughter with Down syndrome: "That overbearing mom/dad persona exists, and a comedy may be exactly what we need to help it be understood." We hope you make it clear why special needs parents behave the way they do.

We hope you accurately depict the mountains we must climb, small and large.

Entertainment website The Wrap describes a scene in which a school groundskeeper and Maya have a run-in when she "throws a fit because the wheelchair ramp doubles as as a ramp for the garbage dumpster." I hope you make it totally clear that this is no small thing; why should a child share an entryway with trash?! Sometimes we have to stand up for our children's most basic dignity. Michele Shusterman, founder of the CP Now Foundation, pulled her daughter out of a school that would not install a bathroom grab bar for her. No joke.

We hope you show the abilities.

OK, so you went clever with the title Speechless, a play on the extreme frustration this mom experiences and her child's lack of articulation. But JJ surely isn't voiceless; there are many ways a child with verbal challenges can communicate—with speech apps and augmentative devices, with gestures, expressions, with their eyes. Our children make their needs known. Please show how competent JJ can be.

We hope you help people understand we're not so different.

As parents of kids with special needs, we are acutely aware that sometimes people pity us and our kids, and think that we are a wholly different species. Yes, we face unique challenges, but our families can be like any out there: We enjoy each other's company, we go places, we have fun, we get on each others' nerves, the whole family shebang. We don't want people to feel sad for us—we want them to include us.

Maya and her family may be fictional, but they'll be the first special needs family a lot of viewers will be exposed to, and they'll likely accept them as reality.

Don't let us down, ABC.

Friday, March 18, 2016

The Special Needs Blogger Weekend Link-up: Get your group on!

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: What makes an IEP easier for me

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 17, 2016

Taking back Raffi and all that grief

The other day, I started a Raffi station on Pandora for Ben. Not a big deal, seemingly, except it was. I associate the singer's music with Max's newborn days, when I was in a dark place.

I'd gotten it into my head that if I played perky children's music for Max, it would help him. It wasn't like I'd found research that songs could boost his brain development, but somehow I figured they could. Looking back, I think part of me also yearned for some semblance of normalcy, and hearing the upbeat lyrics, catchy tunes and accompanying children's voices gave me hope.

And so, the Baby Beluga and Songs for the Very Young CDs were in constant rotation at our house during that cold, snowy winter. I could sing you any of the songs from the albums because they are imprinted in my heart (but I will spare you).

Oh, Baby Beluga from the deep blue sea, you swim so wild and you swim so free....

Oh Mr. Sun, Sun, Mr. Golden Sun, please shine down on me.....

The more we get together, the happier we'll be....

We didn't play much Raffi for Sabrina, because Dave and I decided we were going to do mostly everything different with her. We wanted the opposite experience we'd had with Max's birth. The music of Laurie Berkner defined her infancy.

I'm an older, more developed parent now. I've been able to replace some sad memories of Max's babyhood with happy ones. Like last year, when I took Max for a doctor's appointment at the hospital where he was born and I exorcised that demon.

Songs have a way of being inextricably linked to memories, both happy and sad. "It's Raining Sunshine" makes me really happy because Max used to love dancing to that. (He's requested it for his bar mitzvah.) Norah Jones' "Come Away With Me" makes me really sad. Her debut CD came out the year Max was born and every time I hear any of the songs from it, I picture myself driving Baby Max to therapies and crying in the car, and I choke up.

Raffi's Down by the Bay came on our kitchen Sonos speaker yesterday morning. I was doing dishes as Ben sat in his baby swing and the sun poured through the glass doors.

Down by the bay
Where the watermelons grow
Back to my home
I dare not go
For if I do
My mother will say
"Did you ever see a fly
Wearing a tie?"
Down by the bay
Down by the bay....

As I watched, Ben started gurgling happily.

And just like that, it wasn't a sad song anymore.

Wednesday, March 16, 2016

Fireman Max's good deed project: So proud of this guy

When I started planning for Max's bar mitzvah, it was a given that in honor of it he would do a good deed project, aka a mitzvah project. After I crowdsourced ideas here a year ago, Max opted for a fire safety presentation to nobody's surprise.

I consulted with a teacher at the school who's done fire safety programs, and we decided Max could present to her kindergarten class. That was cool with Max; I pointed out that he would be able to teach the little kids important stuff. The teacher put me in touch with a local fire department, and a firefighter committed to coming by.

Over the course of several weeks, Max put together sentences for the presentation on his Proloquo2Go speech app. Max had plenty of ideas for which fire safety facts he wanted to talk about. I made a PowerPoint with the sentences, Max chose photos and we and shot a couple of action videos for it. He'd run through the presentation on his speech app as the PowerPoint showed on the class's SmartBoard. Firefighter Michael gave it his seal of approval.

On the day of, Max wore his beloved Fire Chief hat and t-shirt from The Wildwood Fire Dept. at the Jersey shore. He brought his favorite Tonka fire truck (well, one of them) to school as a good luck charm.

Max lucked out—Firefighter Michael brought a pal, Kevin. The two of them stood in the class as Max did his thing. Max acted like he'd been making presentations his entire life, so cool and calm was he.

Here's Max's presentation:

Although his videos didn't work because the teacher's computer had no video player, Max gave impromptu live demonstrations of how to stop, drop and roll and crawl low in case of smoke. One of the videos:

The kids were really into it. Afterward, some practiced their stop, drop and roll. I asked this cute little guy whether he'd ever want to go to firefighter school. "No, I go to this school!" he pointed out. Then Max handed out Kidde Worry-Free Combination Smoke and CO Alarms, with 10-year batteries. He's been a Kidde Kid Ambassador this past year, and they generously sent 10 alarms for all the kids, along with fire hats, fire safety flyers and stickers.

When Michael and Kevin invited everyone outside to check out the fire truck, Max was psyched to show kids the various tools. Even the teachers were duly awed by the jaws of life.

This project was a win-win. The kids picked up key tips. And Max clearly felt empowered by what he'd done, because as we walked back toward his class he gave me a big high-five and asked if he could do the presentation again. A teacher standing outside her class overheard us and said that could work, and I just emailed to set it up. How awesome would it be if Max could regularly teach fire safety, perhaps even at other schools?

Oftentimes, kids participate in programs for children with special needs for a mitzvah project (ideally, they stay involved for years afterward). Max has been that kid, and over the years he's enjoyed the company of teens who have come to our house to hang with him. I've always tried to help his playmates see Max's abilities; he is not some poor, pathetic boy who needs to be anyone's "project." (For a related good read on the topic, see Pamela Rae Schuller's I'm Not Your Mitzvah Project op-ed.)

Last week, though, Max was the one doing a good deed. He planned, prepared and made it happen. He truly wanted to help those kindergartners learn to stay safe, intentions befitting a bar mitzvah boy. I was so proud of Max. And even better, Max was so proud of himself.

Tuesday, March 15, 2016

Crowdsourcing: Help get this baby to sleep!

Non-news flash: I am sleep deprived, and getting desperate. This is because I truly enjoy being awake, and it would also come in handy for finalizing plans for Max's bar mitzvah (a mere FOUR WEEKS AWAY). Plus it would enable me to quit doing fuzzy-brained things such as driving to Staples then coming to a dead stop in the middle of the store because I've momentarily forgotten what I came there go get.

Ben continues to be a non-napping baby by day. You'd think that would make him sleep through the night at this point but, nooooooo. He's five months old and sticking with the all-night buffet plan.

Yes, it's time to sleep train Ben, only Dave and I were wimpy about it with Sabrina and Max and nothing's changed.

Longtime readers might recall when Dave and I tricked out Max's room to get the kids out of our bed; we put blow-up beds on the floor and told them they were "camping out."
I asked about sleep training on a local Facebook mom group, and the main suggestions were put the baby to sleep early, consistency, wine and ear plugs. I am all for all of those, especially wine. But I need more help. So please, share your tips. The person with the winning advice gets a baby, for one night!

Monday, March 14, 2016

What makes an IEP easier for me

I'd rather get a cavity filled, take a freezing cold shower or walk barefoot on pine cones than go to an IEP meeting (Individualized Education Program, for the uninitiated—a written document that outlines education goals for a child with special needs that's revisited annually). Although I always hear lots of good about Max's progress, I find it anxiety-inducing to set the course of his schooling and therapies. But year after year, I make sure Max gets what he needs.

At Max's school, parents are handed a draft of the IEP at the meeting. After last year's, when I was shocked by the lack of articulation goals, I told our district case manager that I needed to have the IEP draft given to me ahead of time so I could absorb it, react to it and form my thoughts. Then I had Ben and sleep deprivation ate my brain. So I didn't realize until the morning of Max's IEP last week that: 1) It was the morning of his IEP and 2) I had no draft.

It turned out Max's school had only mailed our new case manager the draft IEP that morning, and she hadn't forwarded it to me. Argh.

I posted about this on Facebook. A couple of other parents said they also get drafts, or did pre-meetings, so there were no surprises on the day of the IEP meeting. A teacher chimed in: "I always send home a draft of the IEP, I want the parents to read over it so they have time to digest it. Also, I do not want to sit and read the whole thing at the meeting. The only time I sent a partial draft home was when it was a contentious meeting and the child's sped placement was up for discussion. I did not want to predetermine anything."

The majority of parents who weighed in, though, noted that they do not get drafts ahead of time; they work on the document at the meeting and make adjustments as a team. "It can be daunting for parents to be handed what seems like a done deal," said Cate M. Someone linked to a Wrightslaw article that mentioned the Individuals With Disabilities Education Act (IDEA) discourages draft IEPs because they can make parents think their input isn't valued. Still, said Marj H., "They are SUPPOSED to develop it collaboratively at that meeting, and yet they never allot enough time for that."

It seems like there are different regulations around the country about providing parents with a working draft ahead of time, and different practices within school districts. I think there are pros and cons to getting a draft. For me, and for our circumstances, it's a good thing.

For one, Max's team has always been open to discussion at the meeting, and so there is no set-in-stone mindset about the working draft. Also, although I'm in pretty close contact with his teacher and therapists so I'm usually in the loop on goals, omissions can crop up. This happened last year with speech articulation and this year, too, when I realized a physical therapy goal I felt was important to Max wasn't in there. 

No matter what, parents do not have to sign off on an IEP at the meeting. "I never signed until all of my questions were answered and my suggestions heard," says Teresa B. "I stopped more than one meeting until people learned I could not be manipulated or intimidated." In our area (it may vary in others), parents have 15 days after the meeting to raise concerns/sign the IEP; after that, it goes into effect.

Max's therapists and teacher all did an excellent job talking about his progress and the goals in the IEP, but I didn't sign it. I wanted to take time to read the 17-page document, which I couldn't do in the throes of the meeting.

Whether you already get a draft IEP, decide to ask for one or stick with putting the IEP together at a meeting, the bottom line is, you know what works best for you and your child—and you are his best advocate and champion.

Image: Flickr/Emily Bean

Friday, March 11, 2016

The Special Needs Blogger Weekend Link-up: It's all for you

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: Getting your kid to eat: Why didn't I think of this sooner?

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 10, 2016

If your child needs all your attention all the time, here's hope

Last night, I needed Max to occupy himself while I was putting an overtired Ben to bed. I suggested that he do some IXL, a website that makes practicing math, science, language arts and social studies fun; he enjoys doing fractions on it. Twenty minutes later, I emerged from Ben's room and stood in Max's doorway. He didn't see me there, watching him. I stared as he tapped the answers on his iPad screen, and I felt so thankful.

This sort of thing happens from time to time: I am suddenly filled with gratitude about what Max can do, because I can vividly recall the time when he couldn't.

As a tot, Dave and I needed to constantly engage Max. He couldn't yet grasp toys, hold balls or press buttons; he wasn't yet able to engage in pretend play. He wasn't a child we could leave alone in a room to play, have him play on the floor as we prepared dinner or get him to occupy himself in his room when he woke up early in the morning. It was consuming, exhausting and draining, all hands on deck at all times. Relief arrived only with visits from my mom, sister and sitters.

When you are in the thick of caring for a young child with special needs, you somehow think life will always be that way. I am not here to give false hope; every child is on his own trajectory, special needs or not. Children progress on their own time, in their own way and not necessarily in every way—but they progress in ways you can't imagine. Oh, how I wish I could tell the mom that was me 11 years ago, sitting on the floor of our playroom and wrapping Max's chubby little fingers around balls and pressing them onto the keys of pop-up toys, to rest assured that he would develop and change and that parenthood wouldn't always be so intense.

And I have never, ever stopped marveling at how Max, and life with him, has changed.

When Max sits in his room alone and plays with a fire truck, I'm thankful. When he vegges on a couch in the living room and watches TV, alone, I appreciate it. And when is immersed in doing math on his iPad—FOCUSING! DOING MATH! VOLUNTARILY! ENJOYING IT! TAPPING BUTTONS BY HIMSELF!—I am not just looking at a boy doing work. I am looking at where this boy came from...and where he will go.

Wednesday, March 9, 2016

Getting your kid to eat: Why didn't I think of this sooner?

"Good evening, sir! Right this way to your table," I say.

Max's face lights up—he instantly gets this little charade of mine.

I pull back his chair at the kitchen table and Max sits down.

Max has taken off weight in the past year, and we're not exactly sure why. He had gotten a bit pudgy during his mac 'n cheese and chocolate milkshake phase of life, so it's possible his weight is correcting itself. (He now prefers stuffed shells and has them on occasion, along with a milkshake.) Some nights, come dinner, he claims he is still full from lunch. I even got his teacher and classmates to make a "Max, eat your dinner!" video to motivate him, but it doesn't always do the trick.

The doctor says Max's size is perfectly fine for his curve, and being on the lighter side when you have cerebral palsy is a good thing. Still, he could stand to have a little more meat on him.

So the other night when he said he didn't want snack because he was tired, I decided to sucker him into it.

"Tonight, sir, we are serving chocolate or strawberry yogurt," I inform him, knowing full well what he prefers. "Which would you prefer, sir?"

He giggles. Chocolate yogurt, it is.

"And would you like banana, too?" I ask.

"Yes!" he says.

"Coming right up, sir!" I chirp, and dash off to the fridge.

I mash some banana in a bowl, mix in the yogurt and present it to him with a dish towel over one arm.

"This is the chef's special!" I say. "I hope you enjoy it, sir!"

"Thank you!" Max says.

I love that I can still play this game with him, and that he gets a kick out of it. In some ways, I  feel like I am making up for lost time because when Max was little, he didn't do much pretend play.

I watch him shovel the food into his mouth. It's a relief to see him eating. 

"May I offer you water, sir?" I ask, and when he says yes I grab a pitcher, fill it up and pour him some.

When he's finished, I tell him the busboy is off for the night so I will clear the dishes. Then I write out a check and present it to him. "That'll be two dollars!" I announce. He giggles, again.

Max stands up and pushes his chair in (I appreciate that he always takes care to do that). Then he walks over to the garbage and throws the check away.

"Hey! That's against the law!" I say.

Max just smiles, and rubs his eyes. He's tired. I'm not concerned that he'll start dashing out of restaurants in real life without paying because he knows he has to. Often, we'll give him the credit card or cash to present to the cashier.

"OK, sir, I know you need to go so you can pay a little later!" I tell him. "Come back soon!"

And that's how CafĂ© Red—Max's choice of name—got its start.

Tuesday, March 8, 2016

A book from Zach Anner, the guy with the sexiest of palsies

March is Cerebral Palsy Awareness Month, and I can't think of a cooler person to raise awareness (and hell) than Zach Anner. I first spoke with the comedian and YouTube star back in 2011, after he'd won the Oprah Your Own Show contest and scored a travel show, Rollin' With Zach. Then I got to interview his mom.

Zach's memoir, If at Birth You Don't Succeed, came out yesterday to rave reviews; it's as engaging and amusing as he is on camera. Zach tells a good, wry anecdote, whether he's plotting to meet Cindy Crawford as a kid or taking a family jaunt to Pompeii, an ancient city wholly lacking in ADA accommodations. He's got great self-deprecating humor, describing his childhood physical therapists' attempt to figure out how he could undress himself as "Apollo 13 for basic life skills." And he can be heartfelt, too, as when he discusses hooking up with his girlfriend, Gillian ("My mistake had been to label my body a burden, rather than a tool.")

Although Zach notes he never expected to be a disability advocate, he's helped a lot of people understand to not feel sorry for him or people with disabilities, exactly what I want for Max. I particularly appreciated his take on the term "differently abled"—as he says, "Do we every talk about anybody being 'differently abled' when they are extraordinary at something, or does it always imply a disadvantage? We don't say Tiger Woods is a differently abled golfer because he's better than anybody else in the world. I've never seen a poster that says Differently Abled Cellist Yo-Yo Ma, Live at Carnegie Hall! It just never rang true for me."

Zach took a few minutes from his book tour to answer some questions.

What's the most common question you get about having CP and how do you usually respond?
"Can I help you with that?" and I respond with either "Sure" or "No, I can open this package of gummy bears by myself."

What do you think people often don't get about CP?
That CP is not the most interesting thing about the person who has it. If it is, they are a boring person.

One good thing about CP is...
There is nothing inherently good thing about CP except it gives you empathy for people struggling. It’s recognizing that all personal struggles large and small are cut from the same cloth.

One meh thing about CP is...

I think it’s a double-edged sword. CP has actually opened a lot doors for me because it sets me apart and I’m able to funnel my talents and humor through it. But I’m often either underestimated or over-praised simply because I’m doing what I’m doing with a physical disability.

Performing stand-up for "Rollin with Zach" at Caroline's prompted thousands of viewers to chuckle to themselves as they labeled me a "sit-down comic"—like they were the first ones to think of it.
What's your best response to people who only see the disability when they look at someone with CP, and not the ability?
My response is the life I live and not paying attention to that stuff. We can’t do our best if our lives are in response to those who expect the least from us.

Fill in the rest of this sentence: If Donald Trump had cerebral palsy, he would... a ramp instead of a wall.

What sort of therapies do you still get for CP?
I just got finished with my 16-week fitness program, Buff Buddies, that is on youtube and very not safe for work. I don’t get physical therapy anymore but I do get massages because they allow, and in fact encourage, more nudity.

Well, this one's pretty self-explanatory and doesn't need a caption. Clearly I'm just running on a treadmill, as anyone else might do.
What's a good wheelchair bumper sticker for someone with CP?
Bush Quail ’92. I’m assuming you could get them pretty cheap these days.

If you could invent one gadget to help people with CP, what would it be?
I’ll use this question not to come up with some fictional thing but let you in on a sexy gadget I use. It’s an electronic heated bidet toilet seat. I have pretty good mobility and dexterity and I don’t really need it but some people who have CP require assistance in the bathroom and there’s nothing that feels more infantilizing and these things can give people their privacy back, which I think is great. Plus it’s stupid that in the 21st Century we still use toilet paper.

What did your parents do right in terms of raising a kid with CP?
My parents always encouraged me to pursue my passions instead of being weighed down by my problems. When I wanted to move across the country to go to college, instead of saying “Gee, I don’t think that’s a good idea,” they said “If you get in, we’ll figure out a way to make it work.” I come from a very creative family and we’re all about making each other laugh and finding humor in struggles.

Me practicing my best Hannibal Lecter/Kanye West impression on a standing board
Can you share a tip or two for parents of children with CP?
Give your kid the freedom and the tools to become themselves. Don’t coddle them or keep them in a bubble. Don’t let your child’s identity or your identity be defined by the cerebral palsy. Sometimes even those of us who are living through it buy into the stigmas. Always ask yourself, am I letting my child reach his or her full potential?

Images: Zach Anner

Friday, March 4, 2016

The Special Needs Blogger Weekend Link-up awaits you

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: Last week, someone treated my child with disability normally

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 3, 2016

Not in the development books: Child will learn to tease you

Last night, Twinkle, Twinkle Little Star was playing on one of our Pandora baby channels and Max said, "Bar mitzvah!" 

I said, "Huh? You want that song at your bar mitzvah?" We've been making a list of music he'd like the DJ to play. 

Max said, "YEAH!" Then he cracked up. 

Gotcha, Mom! 

Max has learned how to tease me. It wasn't something I ever missed during his development, same way I have never once regretted that Max doesn't say "What-ever!" to me like SOME siblings I know. But now that he's teasing me, I am psyched. Because this is cognitive progress. Also, this is what teens do.

There's some gentle mocking happening, too. The other day, I pulled a box of crackers out of the snack drawer only I'd put them in upside down and a bunch spilled onto the floor. "Ha ha ha ha ha!" said Max, giving me his best you're-such-a-lovable-klutz grin.

Lately, he's also doing this funny thing that I am pretty sure he got from his teacher, Linda, who has a great sense of humor. I'll ask him a question—say, "Max, do you want to run to the supermarket with me?"—and he'll put one finger to his forehead, like he's thinking, then say, "Hmmmm...NO!"

I'm not just excited by all this, I'm delighted. As I've said before, I subscribe to the "What not to expect from your child with special needs" school of parenting. I have plenty of hopes for Max's development, but no expectations. Because he will do what is he capable of doing, on his own timeline.
And so: Yeah, teasing! I'm going to work on getting Max to say, "Kid-ding!" Not the least of which is, he needs to get better at articulating k's and d's.

Wednesday, March 2, 2016

Last week, someone treated my child with disability normally

Last week, someone treated my child with special needs normally.

It was so remarkable and unexpected that I posted about it on Facebook.

I'd asked the DJ who will be hosting Max's bar mitzvah if he would swing by our house to say hi. I wanted Max to feel comfortable with him, as I think he's going to be overwhelmed on his big day and the more familiar faces, the better.

Jay stopped by around 7:30, after his workday. By then Max was a little tired and not at his best, but it didn't matter to this guy.

He seemed comfortable around him right from the start.

He was friendly to Max, in a real way.

He didn't talk down to him or speak in a babyish voice.

He didn't look at him with sad eyes or give him a pity smile.

Jay engaged him in conversation and asked straightforward questions, assuming that Max would understand—as in, he presumed competence. He asked if Max had any requests and when my firefighter-obsessed boy said that he needed to be called Fireman Max, Jay said that was cool and didn't blink an eye. When Max informed him that he did not like loud music, Jay noted that a lot of kids didn't and promised him the music wouldn't be loud.

Jay spoke with him like he was talking with any child. Such a simple thing, yet it's everything.

"This made me happy—I wish it were a regular, everyday occurrence," remarked a mom who also has a child with disability, summing up the sentiments of many. "I love when people talk to my daughter, not at her or to me. I wish it happened more often."

"Sometimes it feels like that same act is like finding a unicorn," noted another commenter.

It's sad, but true: People frequently fail to treat kids with special needs like other kids.

Sometimes it's because they've had no personal experience with kids with disability, and just aren't sure what to say or how to behave. (Tip: Start with "Hello.")

Sometimes it's because people can only feel sympathy for kids with special needs; they assume their lives are inferior to the rest of ours, and they should therefore be treated as if they are tragic.

And sometimes, they assume that children with intellectual disability are incapable of communicating or interacting. Perhaps they consider them stupid—as is implied by the word "retard."

Today is the eighth annual day of awareness for Spread the Word to End The Word, a campaign started by the Special Olympics. For decades, the term "mental retardation" was the clinical diagnosis for people with intellectual disability. Then the words "retard" and "retarded" became slang for people doing ignorant, laughable or loser-like things—not words you want associated with your child with disability.

Six years ago, Rosa's Law replaced "mental retardation" in federal laws and literature with "intellectual disability." Many schools, doctors and hospitals, along with the Supreme Court, have also quit using the term because it's become derogatory, and the words "retard" and "retarded" slurs—including when they are used jokingly ("You're a retard for putting on your shirt inside out!")

When people call a friend a "retard" or a situation "retard" or "retarded" or refer to someone as a 'tard...

When people use the hashtag #retard or #retarded on Twitter...

When major Hollywood films like Tropic Thunder have entire scenes poking fun at "retards" and generate a popular meme "Never Go Full Retard"...

...they're spreading negative perceptions of people with intellectual disability. Why should my boy or any person with ID suffer the consequences of that? Don't they have enough challenges to overcome in life? 

Of course, people often unknowingly use these terms, not aware of their implications; even the president of the National Education Association referred to the "chronically tarded" in a speech last December. (She subsequently apologized.) And to be sure, these slurs are hardly the only reason people continue to treat children with special needs the way they do—yet it's one of them. Argue away but the reality is, perception matters in this world.

There are some heartening changes happening out there. Integrated education is enabling a new generation of students to  better view—and accept—children with special needs as peers, not pitiful creatures. There's inclusion in cheerleading. This year, a young woman with Down syndrome made headlines when she became an Alpha Sigma Alpha sorority sister at Murray State. There's also increased media and cultural mainstreaming of disability, including more people with disability in ads and catalogs; on runways; and trickling onto TV shows.

Teens are getting it, too—take a look at the #RWordStomp2016 video from the North Rockland High School Best Buddies Club.

Meanwhile, parents continue to raise awareness, forming nonprofits like Family Member (I'm on their board) and even creating comic books like Department of Ability. Siblings are speaking out as well. "Caroline is every bit as wonderfully flawed as any other teenager in this world," wrote Elon University student Michael Bodley about his sis, who has Down syndrome. "And she's really sick of you calling her retarded."

The solution involves changing perceptions about people with special needs, and it starts at home. Parents can help their children understand that even if kids with disability appear or act differently, at heart, they are still children. If you hear your child using the word "retard," if you see it in a book (the word "retard" appears in the bestsellers Wonder and Dork Diaries) or hear it on TV or in a movie, use it as a jumping-off point for discussion.

Avoiding the word "retard" is just one thing—one really simple thing—people can do to respect those with intellectual disability. Max deserves to be viewed as a person, period, not a defective one. People shouldn't decide who people with intellectual disability are before they've ever met them, exactly what the slur "retard" does.

I dream of the day when the Jays of this world, aka people who treat Max normally, are no longer a rarity.

And so, once again, this parent makes the ask: Please, use another word.

More on this:

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

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

Photo: Flickr/wallsdontlie

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