Why your house can never be too protected from fire

Max and I have both learned a whole lot about fire safety in the year since we became ambassadors for Kidde. Key tips include: Every bedroom needs a working smoke alarm. Closing your bedroom doors at night is the safest way to sleep (it can help keep a fire from quickly spreading throughout a house). There needs to be a three-foot clear radius around your furnace, so clean the clutter. Regularly suck lint out of your dryer vent with a vacuum. When addressing your child, call him Fireman Max (oh, wait, that's just me).

It's been good to know that we've helped other families, including one close friend's. In my post on fire safety during cold weather, I'd noted that people should blow out candles when they leave an area. My friend's daughters read the post, and reminded her on the night they lit a Chanukah menorah made out of wooden spools that they shouldn't leave it unattended. But then my friend walked out of the kitchen, got busy and forgot about the menorah. When one of her kids went to check on it, she found that the spools had caught on fire. "If she hadn't gone in to check because of your blog," my friend wrote, "we could have had a fire."

It was quite the happy ending. And then, the other week, I headed off a potential problem in our house. We'd had an expert inspect our home in the fall to make sure it was well insulated, as our electric bills are high. As part of his audit, he suggested we put explosive gas alarms in the basement and kitchen. I hadn't even known that they existed. Kidde sent a few of their Nighthawk AC Plug-in Operated Carbon Monixide Explosive Gas Alarms. The second I plugged one into an outlet in the unfinished part of our basement, it went off. Eeep. Then I went over to the playroom (aka the nice part of our basement) and plugged it in there. It went off again. Double eeep! That's when I zoomed over to the phone and called our utility company.

A technician showed up within a half hour, and walked around the basement with a gas detector. He found a very small gas leak coming from a gasket on the water heater we'd installed last winter. It wasn't dangerous—it wouldn't have caused an explosion—but as he noted, you don't want gas leaks in your basement. The plumber who had installed the water heater replaced the gasket at no charge. When I reinstalled the gas explosion alarm, it didn't go off.

I think the biggest lesson I've learned from being a Kidde ambassador is that there's no such thing as a house that's too protected from fire. You owe it to your family to do everything within your power to make sure they're protected, and it's actually pretty simple to do. Once the smoke and carbon monoxide and gas alarms are in place, once you have fire extinguishers on hand (including a dedicated kitchen one, once you have a fire escape plan (practice with your family!) and once you know the key safety to-dos, there's not much more maintenance involved. You'll sleep better at night knowing your family is more secure.

Cool contest!

Kidde just launched Step Up and Stand Out, a campaign to recognize and recruit volunteer firefighters. A whopping 87 percent of this country's fire departments are either fully or partially staffed by volunteers. Know a volunteer firefighter or support volunteer? Submit a video no more than two minutes at Firehouse.com explaining how your nominee has gone above and beyond to serve the community; entries will be accepted from now through May 21, 2016. There will be five finalists, and then a grand prize winner who will receive a $1000 training grant and more. Read the full details here.

More from the fire safety series from me and Fireman Max:

Family fire safety during cold weather: 25 key tips

Making a family fire escape plan for kids with special needs

9 summer fire safety tips for outdoor fun

What we learned from our home fire safety inspection

Protecting your family from a home fire

For additional info, check out: 

Kidde on Facebook
@KiddeSafety on Twitter
@kiddefiresafety on Instagram

This post is one in a series sponsored by Kidde, for whom I am a compensated ambassador. 

Image of fire: Free Clip Art 

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5 things I learned about people with disability watching new movies

This guest post is from my friend Bari Nan Cohen. She's a mom of two, entertainment editor and writer, and one of the funniest, liveliest, most goodhearted women I've ever known.

I’m in a pretty great club called FOE—Friends of Ellen. We worked together at YM, where I was entertainment editor, helping our teenage-girl readers decode the mysteries of teenage life (i.e., boys). It’s only fitting that we had our first babies (boys, of course!) within six months of each other, albeit by then I was living 2500 miles away in Park City, Utah, and taking full advantage of the fact that Hollywood comes to my backyard for the Sundance Film Festival every year.

Despite the distance, and the differences in our respective families, we have learned from each other as parents. I like to think in our friendship that I give Ellen the “He’s still just a boy” reminders and she offers me the gift of Max—an amazing kid, with an awesome personality, incredible interests, a wickedly contagious laugh and specific needs that have shaped his parents’ world view. She's shown me that there’s no more staunch and determined advocate than a caregiver of a special needs child. (That's true of parents of typical children, but in parents of kids with special needs, it’s more like a superpower.)

What I have learned about special needs people from Ellen informs the way I do things. And, so, it informed the way I viewed three films I recently saw at Sundance 2016.

Owen Suskind, Disney fan

Life, Animated is a documentary based on the book by Ron Suskind, father of Owen, now 23. This coming-of-age story is framed around Owen’s affinity for Disney films. Over time, his family realized that they could leverage that love into improving his verbal communication and his understanding of the world around him. The film documents the year he graduates from a residential school and moves into an assisted living complex.

Taron Egerton and Hugh Jackman in Eddie the Eagle

Eddie the Eagle, which opens Friday, Feb 26th, is a fictionalized biopic directed by the inimitable and hilarious Dexter Fletcher. It follows the improbable journey of Eddie “The Eagle” Edwards (Taron Egerton) from a child who spent a year in hospitals for a disability that isn’t named, wore a leg brace for a period of time and grows up feeling determined to be an Olympian, to an adult athlete who realizes his dream as Britain’s sole ski jumping athlete at the 1988 Olympic Winter Games under the guidance of a reluctant American ex-pro (Hugh Jackman).

Craig Roberts and Paul Rudd in The Fundamentals of Caring

The Fundamentals of Caring stars Paul Rudd (based on the novel The Revised Fundamentals of Caregiving by Jonathan Evison) as Ben, a father who has suffered a great loss. He takes on the caregiving of Trevor, a twentysomething with muscular dystrophy who uses a wheelchair and whose single mother has designed a routinized, nearly-housebound life for her son as an act of survival (spoiler alert: hers, not his). They wind up on a wacky road trip, with a runaway (Selena Gomez) and a pregnant military wife that forces everyone involved to push the limits of their expectations of themselves. 

Some of my takeaways:

Hope is the secret sauce. 
We build on hope in everyday circumstances, regardless of our situation. But in the special needs world, hope is like a sixth sense, the thing that makes figuring out life’s puzzles possible. In Eddie the Eagle, the child who seemed relegated to living on the sideline tells his mom he’s training for the Olympics, and in spite of his dad’s discouragement (based on worries the kid will get his hopes dashed), Mom provides a biscuit tin to 9-year-old Eddie—“to hold your medals," she tells him. And, so, empowered with hope, he tries his hand at dozens of sports.

Treat people with disability like...any other people.
Ellen has often written about how she wishes people would address Max directly in conversation  rather than behave like he’s not right there. So the moment at beginning of The Fundamentals of Caring when Ben talks about Trevor in the third person, as if he isn't in the room, I cringed. But as Trevor calls Ben out, revealing a biting wit and hilarious potty mouth, it's clear who's got the sharper mind of the two—and that while Trevor has special needs he doesn't always require special handling.
 
People with autism are just people with different challenges. 
That's a line Owen delivers at a conference on autism where he is the only person with autism to present. It seems true of people with various disabilities. I’ve never met a human—special needs or otherwise—who isn’t capable of rising to meet a challenge. As Paul Rudd said after the premiere of Fundamentals, "We are more than our apparent limitations."

From Left: Ethan Suskind, Cornelia Suskind, Owen Suskind, Ron Suskind, director Roger Ross Williams and actor Jonathan Freeman (who played Jafar in Aladdin and appears in the film, having become friends with Owen) take audience questions. Owen put in a plug for the qualities he’s looking for in his next girlfriend; "loves Disney" topped the list.

Success isn’t one big thing, it’s lots of little moments.  
For Trevor, independence is earned, mile by mile, on a trip to visit the roadside attractions that he’d seen on TV. Owen’s successes range from knowing to ask for help when he can’t figure out how to open a mailbox to landing a job at a movie theater—the “inchstones” Ellen often writes about. Disney movies help Owen navigate almost every life circumstance. And I do mean almost. One of the film's funniest scenes is when Owen’s brother Ethan tries to have a frank chat with him about sex—only to find that without a Disney context, he has little basis for a meaningful conversation. “I mean, could we find some Disney porn?” Ethan asked rhetorically during an interview, with amused exasperation.

At The Fundamentals of Caring premiere party, I got to meet (from left) Jonathan Evison, the author of the book on which the movie is based, and Case Levenson and his mom, Ruel, whose family inspired the book. 

Inclusion isn't as effortless as it should be.
When caregiver Ben bumps up against a lack of ADA accommodations for Trevor at one of the attractions, it seems like a cheap laugh when they make the out-of-shape proprietors of a giant bovine exhibit haul Trevor, in his wheelchair, up the rickety barn-loft stairs. Except that it’s making a real point: Inclusion doesn’t come naturally to everyone and every situation, but the more we demand it, the less effort it will take in the long run. It reminded me of the point that my husband’s cousin and his wife, who are hearing-impaired, have made to friends and family: “If we ask you to repeat a missed lip-reading cue, don’t say, ‘It’s not important.’ It is. We want to be part of the conversation.”

Movie stills: Life, Animated,IMDB; Eddie the Eagle, 20th Century Fox; The Fundamentals of Caring, IMDB. All other photos courtesy of Bari Nan Cohen.

Boys will be boys

Max is bending over Ben in this photo to tell him one important thing: "Good job!" That's because Ben let out a burp likely heard in Kathmandu, and Max thought it was rather stellar. He even tried to give him a high five, so impressed was he.

If you don't have a child with disability in your life, I'm here to once again fill you in on just how much like other kids they can be—in this case, the burp, fart and poop obsessions. Max is very amused by Ben's output, as is Dave. Yes, the menfolk in my life are all members of the Bodily Functions Celebrations Club, in which no burp goes unnoticed and no toot unmentioned. As you can imagine, this makes for one seriously elevated level of conversation around our home. 

When Dave is changing Ben's diaper, Max will find me to report on the size of the poop. "It's big!" he'll say, delightedly, throwing up his arms. "It stinks!" He regularly asks if, when he was a baby, he made big doodies because he knows the answer is a big "Yes!" He giggles when Ben belches. When Ben passes wind, Max says "Ewwww!" with a huge grin on his face. Sometimes I'm similarly surprised by the decibel of sound emanating from one little guy but there comes a point where you just don't want to talk about it again and again...unless you're Max and Dave.

Happily for me, Max enjoys blotting Ben's spit-up (not as copious as it once was but still regularly dribbling out of him). Just when I'm drowning in exasperation about having to change Ben's outfit once again and clean spit up off the couch/floor/rug, there's Max leaning over to dab Ben's face with a burp cloth and saying, "There you go!"

Meanwhile, we're still working on the whole "Excuse me" thing (with Max, that is). Because when he belches or farts and I prompt him "Max, what do you say?" he responds "Thank you!" then cracks up. He knows full well what's right, but he just wants to be a wise guy. Because boys will be boys, disability or not.

Tommy Hilfiger makes clothes for kids with disabilities, thanks to a mom's dream

Say you have a child with a disability who has challenges using his fingers and hands. It's been a long haul helping him learn to feed himself, hold a cup, maneuver a toothbrush, grasp toys, turn lights on and off, use a TV remote control and twist doorknobs, among other manual tasks. Thanks to lots of practice and even more determination, your child can now do these things. Not with ease, but he manages. And yet, there is one key life skill that eludes him: dressing himself.

When your fingers don't do what you want them to do, buttons, snaps and even zippers can be tough to manipulate. Your child is frustrated by this lack of independence. Therapists at his school put fabric loops on sweatpants so he can pull them up and down, but have no suggestions for how he can put on his own shirts.

That child is my Max, who has cerebral palsy. And as of this week, he's gained some dressing independence because Tommy Hilfiger has launched a line of adaptive clothing, available on Tommy.com. It's the first designer adaptive clothing, and it's due to the efforts of fashion designer Mindy Scheier, founder of the nonprofit Runway of Dreams. Her muse: Her 11-year-old son, Oliver, who has a rare form of muscular dystrophy. Mindy and I have a connection through a program our children attend, Friendship Circle, and she brought over samples for Max to try.

Styles from the Tommy Hilfiger Adaptive Clothing collection

This is a Big Deal for children like Oliver and Max, their parents and the fashion industry in general. It's the first time a major clothing line, let alone a designer one, has created clothing for people with different abilities. The collection includes 22 pieces for boys (sizes 4-20) and girls (sizes 4-18); the tops, pants, jeans and dresses are adaptations of other styles on Tommy.com. They have magnetic closures instead of buttons, adjustable pant legs to fit foot braces and adjustable sleeves.

Based in Livingston, NJ, Mindy's designed for Bloomingdale's and Saks Fifth Avenue. Over the years, she's adapted clothing for Oliver. Her aha! moment came came when Oliver wanted to wear jeans to school like his friends were. Problem was, they wouldn't fit over his leg braces, plus the button and zipper wouldn't have been possible for him to manipulate by himself during bathroom breaks. "I didn't even have the words to tell him he couldn't wear jeans to school," she recalls. "It was very upsetting to me." But she did have the sewing skills. She altered jeans to fit his leg braces, then stopped at school during lunch hour to help him use the bathroom.

Mindy and Oliver Scheier

That's when Mindy decided there was no reason Oliver and kids like him couldn't wear whatever they wanted. She started Runway of Dreams in 2013, with the mission of working with the fashion industry to adapt mainstream clothing for the differently-abled. She spent her first year doing surveys and focus groups with parents and kids to assess the needs of the community. Besides cerebral palsy, having Down syndrome and autism can also affect fine-motor skills and the ability to fasten clothing.

Using clothes from Kohl's, Target and Wal-Mart, Mindy had samples made up with MagnaReady magnets as closures (founder Maura Horton has a husband with Parkinson's disease). She showed the clothes to Global Brands Group, which makes children's wear for Izod, Calvin Klein and Tommy Hilfiger. And that's how Runway of Dreams became a reality.

Mindy and Oliver on The View in May 2015

Given that nearly one in five people in the U.S. have a disability, according to the most recent U.S. Census Bureau data, it may be hard to believe that until now no big manufacturers have created adaptive clothing. But the truth is, often people just don't get it unless they know someone with a disability. "I've been in design my whole career and only after I had Oliver was I privy to issues I never knew existed," says Mindy. "It takes a big mouth to help the industry understand this is a community that has not been served." Perhaps Tommy Hilfiger gets that more than other designers would, given that both he and his second wife, Dee, each have children with autism, and Tommy has done a PSA for Autism Speaks.

The time is ripe, she continues: "With Lego coming out with a figure in a wheelchair to models with disability walking down the runway, our culture is ready for this to happen." Mindy even trained the Tommy Hilfiger customer service team, explaining how to talk about children with different abilities. "Everyone there is saying they've never been more proud to work with their company," she says.

Oliver participated in the shoot for the Tommy Hilfiger website, along with six other differently-abled kids. "He's just so excited to have other people wearing what he's been able to wear," she says. "When we were in the middle of the shoot, Oliver looks at me and says, 'You see, Mom—if I didn't have muscular dystrophy, we wouldn't be here!' I said, 'You're right!'"

Mindy's already designed two more collections for Tommy Hilfiger, who made a donation to Runway of Dreams. They're in discussion about expanding the clothing to retail stores, and creating a line for adults.

Tommy Hilfiger Adaptive Clothing is the same price as the brand's standard children's styles, something Scheier pushed for. "I didn't feel our community should have to pay more," she says.  "It's a huge testament to Tommy, he absorbed the extra costs—the cost of a magnet is significantly more than a button." Some parents won't be up for paying designer price tags (the cost of the red shirt is $29.50). But Mindy's just getting started, and is in talks with other brands and retailers. "My dream is that there's adaptive mainstream clothing for every person out there whether you're shopping at Walmart or Saks Fifth Avenue," she says. 

Max and I were both excited for him to put on the clothes. The jeans size we got was small at the waist for him, so he tried the snaps with the jeans off and could open and close them with some fiddling.

I knew Max wouldn't be able to slip his arms into the polo by himself, even though the fit and material were nice and loose, because he's not yet able to move his arms that way. But the magnets made it feasible for him to close the front. They're powerful, and are drawn to each other with just a nudge; as they connected, they made an encouraging "click!"



Maybe some people watching this will see a boy struggling to put on a shirt. Me, I see only success. This is the first time in Max's life he has closed a top by himself, and it was only his third attempt. I love how the adaptive shirt enabled him to do a task that's previously been impossible. It was one little click of a magnet, one big move toward independence.

Clothes like these will be a game-changer for our kids. Not only will they have more autonomy, they'll better fit in with their peers, given that the clothes have the usual cool, crisp Tommy style. As Mindy says, "When you put on something that you feel good in, it affects your confidence and self-esteem."

What Max had to say: "It works! Yeah!"

Images from Tommy.com: Richard Corman. Image of Mindy and son: Runway of Dreams

He's going to show little kids a thing or two

In a couple of weeks, Max will be making a presentation at his school about fire safety. It's his good deed project for his bar mitzvah; I crowdsourced ideas for it here last April, and that was the winner. (So many thanks, Anonymous, whoever you are!)

Max's school speech therapist made a suggestion: He could string sentences together on his speech app, and then I could put help them into a PowerPoint that would run simultaneously. In the last couple of weeks, we've been working on that and shooting photos and videos, too. Max is so excited.

At first, he was going to present it to his classmates, but another teacher at school suggested doing it for kindergartners. Max's peers have heard firefighters make these presentations, but not the little kids. A firefighter from a local station, Mike, will be in attendance; the guys there regularly do presentations at school. I am sending Mike the PowerPoint ahead of time to make sure it's OK.

Max and I had a little debate about introducing himself as Fireman Max. I wanted him to write, "My name is Max and I like to called Fireman Max." He wants the presentation to read, "My name is Fireman Max." I explained to him that little kids might get confused and think he was a real fireman, at which point he gave me a get-a-grip look and noted that he is a fireman. Really, there is just no arguing with that p.o.v. We'll see if it flies with Fireman Mike.

Max is psyched about this because: fire! Smoke! Firefighters! Safety! But it's also clear to me that he is eager to share what he knows with the kids. It's a real confidence booster. Who knows, maybe this could lead to him doing presentations in other schools or settings.

Meanwhile, I will be watching Fireman Max's Fire Safety Rules several times a day for the indefinite future and hearing "Stop, drop and roll!" in my dreams.

The Special Needs Blogger Weekend Link-up has arrived, once again

What to do if you're new here

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Like this: A mother with intellectual disability has her baby taken away

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Idea not for Shark Tank: Chocolate-flavored breast milk

Max is watching me pour milk I've just pumped into a bottle, as I often do right after he gets home from school. He is fascinated by this whole nursing thing. Sabrina asks about it on occasion, but generally has a bit of a know-it-all attitude. Max, he's just really curious.

This is a boy who once didn't know to ask questions. Now, they pour out of him.

Did he drink a lot of milk when he was a baby?
Does Ben mind that he only drinks and can't eat?
Is it cold or hot?
Does it taste like a milkshake? 
Does it stop when I sleep?
Did I drink that when I was a baby?
Can you buy boob milk at the supermarket? (This he asked by pointing to my boobs and then showing me a carton of milk in the fridge.)
When can Ben eat baby food?

The wheels, they are spinning.

Yesterday afternoon, Max pointed to his cup of chocolate milk on the kitchen table, then he pointed to the bottle of breast milk.

"You think breast milk should come in chocolate?" I asked.

"YES!" he said, excitedly.

He is so looking out for his baby bro.

Bar mitzvah practice makes who-cares-if-it's perfect

Yesterday, Max and I headed to the temple where he's having his bar mitzvah. We met up with the music teacher he's been working with, and Max stood at the podium as she played guitar and they and ran through the songs.

Slowly but surely, we are inching our way toward his big day in April. And I do mean slowly, because juggling a bar mitzvah and a new baby is—how shall I put this—insane. Watching Max practice gave me some peace of mind, not to mention pride.

Last year at this time, Max refused to even walk into the sanctuary. Now, he dashed in there, made a beeline for the podium and adjusted the mic. Why say "Testing, testing" when you can say, ""I'm Fireman Max!"

He had the melodies down pat. He had the rhythm. He sang with enthusiasm and joy. The enunciation of the words: a work in progress, to some extent. That's never been Max's specialty and really, the words seemed secondary to the feeling and there was much there. Max sounded great to me. If I've learned one thing from raising him, it's that perfection is overrated.

The Shema is perhaps one of the most famous prayers in Judaism. In it, we ask God to hear our prayers.

As I watched Max singing it, it was clear God has heard mine.

A mother with intellectual disability has her baby taken away

Mothers with a disability can have their parental rights terminated. Sounds like something in a far away, backwards country, right? Actually, it's a law on the books in 37 states in this country, as I discovered when I caught up on magazine reading this weekend. New York's Who Knows Best told the story of Sara, a young woman in Massachusetts with an intellectual disability whose baby girl was taken away from her.

Sara and her mother, Kim, planned to jointly care for the child. But when authorities from the Department of Children and Families (DCF) came to the hospital to watch Sara handling her infant, they observed that she didn't do a good swaddle with a receiving blanket. They learned that she'd missed a feeding because she didn't know how to tell time on a clock with hands. They thought she didn't hold her child safely. And so, the baby went to a foster home.

It's a troubling read, especially if you have a child with ID. Similarly disturbing is the report the article cites, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children, published by the National Council on Disability in 2012. "These parents are the only distinct community of Americans who must struggle to retain custody of their children," it states. The removal rate for parents with intellectual disability is 40 to 80 percent.

A DCF social worker who monitored Sara's visits with her child would time her feeding, diapering and soothing her. As is often the case with people who have an intellectual disability, Sara needs extra time to figure things out. "I can't learn in five minutes. It just doesn't fit in my book," she says. And then she notes, oh so astutely, "They judge even before they read the book—instead of reading the beginning, they go straight to the end." 

Sara filed a discrimination complaint against DCF with the U.S. Department of Justice. Ultimately, the presiding judge granted guardianship to her mother. It's a happy ending for her, but not for many other parents out there with ID or physical disabilities. In recent years, cases have made the news of authorities attempting to remove children from parents with cerebral palsy and quadriplegia.

With the right supports, as necessary, plenty of people with physical and intellectual disability can navigate the responsibilities of parenthood. Their hearts, however, need no enabling; they are as capable as any of us of loving a child. When you consider the headlines about abused children neglected by the system, it's mind-boggling to consider the scrutiny to which people with disabilities are subject to.

I don't know if Max will one day marry. I hope he does, if he wants to. I hope he has a baby, if he wants to. And I hope that nobody will interfere with his rights to live and love as he wants to.

But I wonder.

When it really is the thought that counts

It's not just that Max spent part of his occupational therapy session last Thursday making a Valentine's card, a fun way to get him to use his hands.

It's not just that he decided to make it for me, notable because earlier last week when his music therapist and he made up a song to sing to his true love, Max chose Firefighter Angelo. "But you were second," the therapist reassured me.

It's not just that Max so carefully patted down the hearts, a feat of fine motor skills.

It's not just that he was even able to manipulate itty-bitty pom poms.

It's not just that he told the therapist he wanted to do a pattern, and he did.

It's not just that he grudgingly agreed to a pink ribbon, for me, because he is all about red.

It's not just the gigantic grin on his face when he gave it to me.

It's not just that he said, "It's uh oooh, Ohmmy!" ["It's for you, Mommy!"]

It's all of the above, and more.

The Special Needs Blogger Weekend Link-up: Put 'em up

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 insurance companies to pay for children's therapies

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

Getting insurance companies to pay for children's therapies: 9 hacks

I've previously covered ways to get the insurance company to pay for your child's therapies, including these tips and the time I was just joking about cc-ing God. (Not to mention my fed-up-with-insurance-companies posts, like this.) I've got new hacks, inspired by some recent success with my insurance company, tips from Facebook readers and one seemingly genius hack shared by reader/parent Dale McCarthy (who just started Respect for All Abilities, which offers customized school disability awareness programs). Here's how to get reimbursed for a child's speech therapy, occupational therapy, physical therapy, ABA therapy and more. 

Find a point person
At our current insurance company, there are no case managers you can be assigned to. But I did find one truly competent and nice supervisor who I could reach out to for help with claims that weren't paid. The next time you're fighting a claim, ask for a supervisor; if he or she knows what they are talking about (not always the case), either get their phone number or ask if you can request them. And then, going forward, either call them when you have a claims issue or get a message to them to call you so you don't waste your time with clueless representatives. As reader Teresa Brown says, "Often the people who answer the phone are the least experienced and knowledgeable, or their authority is limited."

Do it their way
It's simple but something that's easy to forget amid the bazillion other things you have on your plate: Submit claims exactly the way the insurance company wants you to. "Follow the (exquisitely detailed) instructors to the letter—they're often in your statement of benefits or the insurance company's website," notes reader Amber Kay. "Physicians' authorizations must be signed in BLUE ink. Use paper clips NOT staples. Whatever."

Use a different code
The CPT (Current Procedural Terminology) code are the numbers speech, occupational and physical therapists (among others) put on bills for treatments done during a session. If you're getting denied for one code, talk with the therapist about trying a different one on subsequent bills. If that therapist doesn't know, see if she can ask colleagues. Recently, I asked therapists to change the ICD (International Classification of Diseases) code—aka diagnosis code—on our bills. They'd been using "stroke." When we changed it to "cerebral palsy, unspecified" the speech bills previously denied were put through.

Emphasize medical necessity
When speech sessions have been denied, I've had Max's neurologist and pediatrician write letters of medical necessity explaining that oral-motor therapy (part of speech sessions) are a medical necessity to help prevent choking. "For speech, we often use the idea that the child can't communicate hurt or illness as a medical necessity, especially if they have medical diagnoses that are relevant," says Evana Sandusky, a pediatric speech language pathologist and mom of a child with Down syndrome. "I have also used medical necessity if the child can't give basic info like name, age or parents name in case they get separated or lost."

Know your rights
The majority of states now have insurance mandates for autism, meaning they require certain insurers to provide coverage for autism spectrum disorder. Specifics vary between states. See the list of states here and what their plans entail.

Try, try again
If your child was denied a therapy session for lack of medical necessity, ask your child's therapist and doctors to write letters of medical necessity. Include notes from sessions as well. If your child gets therapies at a hospital, see if there is a social worker who works with patients on healthcare insurance and if so, get her to guide you. You can also reach out to the Patient Advocate Foundation, a nonprofit that handles health insurance appeals for free; reach them at 800-532-5274.

And then there's this
While I can't vouch for this strategy as I haven't tried it, it seems worth a shot if you have gotten nowhere.

Keep track
"Keep good notes: date and time of call, name of person, title/dept. and what you were told," says Teresa. "The devil really is in the details."

Doctor doesn't even accept insurance?
"Ask if the office if they are associated with a clinic or office that does accept insurance," recommends reader Shannon Luhrs. "That way, you can see the people you want to see and bill through the associated office."

"Wine. Maybe vodka."
That's the winning tactic reader Marla Huseman Grace recommends for dealing with insurance companies. Cheers!

Almost Wordless Wednesday: Max is going places

Personalized stamps, for Max's bar mitzvah invites. Mail doesn't get much happier than this.  

A house haunted by memories, a house blessed by memories

Is it possible for a house to be filled with memories both haunted and happy? Yes, it is, especially when you're raising a child with special needs.

Our front door is a good spot. I can still recall Max as a kid being just tall enough to peek out through the glass, and feeling lucky when I left for work that he was able to stand on his own. To this day, walking down the street toward our house and seeing his face smiling at me blisses me out, no matter what kind of day I've had.

 

Our dining room is a mixed bag. For years, it was the kids' playroom, packed with toys from corner to corner. There was a big round rug, light green with palm trees, where physical, occupational, speech and visual therapists would sit with Max as a tot and try to get him to move his limbs and hands; grasp toys, blocks and balls; utter sounds; and focus his eyes. Sometimes, I dreaded being with Max on that rug. I so wanted to just play with my boy instead of everything having to be therapeutic. But this is also an area where we celebrated Max's wins, like him being able to pull himself up and drop balls down this whirly tower he loved. 

Our living room is where I picture Max commando crawling. For months, he couldn't raise himself up on his arms and knees and so he'd propel himself forward by pulling his body along with his arms and pushing off with his legs. 

I was so proud of him, so impressed by his determination and so hopeful that one day he would do a quadruped crawl on all fours (an indication that his arms and legs were stronger) and then one day, he'd walk. Max got around really fast doing that commando crawl—not just in our house but in mall play areas and on grassy lawns of concerts we'd take him to and at friends' homes.

 

This is the rocking chair where I'd sit with Baby Max at night and rock him to sleep. I was a ball of anxiety back then, so worried about what the future held for him. But when I'd cuddle him as a Bedtime With the Beatles CD played, I felt some peace. Because I was a mom doing what any mom does, and he was a baby going to sleep the way babies do. The chair is now in Ben's room, and it still brings the calm.

This is our bedroom, with the Charles P. Rogers frame I spent so much time choosing and a bed wondrously free of piles of laundry. When Max was one and a half, he co-slept with us. He woke up burning hot on a June morning. Suddenly, one his legs started shaking. Then the other leg started shaking. Within seconds, his entire body was convulsing and his eyes had rolled back to his head. It was a seizure, a grand mal that couldn't be stopped until Max got to the hospital. I don't think about it very much anymore, but the memory of that morning will forever be part of that bed.

And this is Max's bedroom. The bed used to be on the right right side, and the area in the middle was empty. On his third birthday—literally, on his third birthday—Dave knelt by the window in the left corner and held Max by the waist as he stood. I knelt on the other side of the room. Up until then, Max had been walking only when he was using a walker or holding someone's hand. "Come to Mommy!" I said. Then Dave let go and Max toddled from his arms, across the floor and into my own. They were the happiest tears I have ever cried. 

Once in a while at night, as I'm sitting in bed and reading a book with Max, I'll picture him walking across the floor. This room will always be magical to me.

When do kids quit being crybabies?

As a baby, Ben has a good excuse for crying. But I thought that as Max and Sabrina got older, they would quit crying over stuff.

I was very wrong.

Usually daily, but at least several times weekly, one of them is crying over something. Sabrina will melt down if she doesn't want to go out with us to the grocery store or other places that do not have tween clothes. Or if Max is bugging her. Or that one time she didn't win the spelling bee. Max will cry when he doesn't feel like doing a therapy session because he's tired, or pretty much anytime he's sad.

Ben is a lot easier to console: I feed him, burp him, change his diaper or rock him to sleep. I keep wondering when Max and Sabrina will quit being crybabies. Yes, Max is still coming along developmentally which may be partly to blame for his tendency to tear up but still, there's a lot of crying—with both kids.

Saturday night, Max was very bummed. He'd gone to a Sabbath sleepover hosted by The Friendship Circle. The kids got to stay in a hotel, which is always Max's idea of a good time. Dave went to pick him up and called me, and I heard Max bawling in the background.

"He doesn't want to leave," Dave said. "He wants to sleep at a hotel again!"

Dave put him on the phone.

"Hi, Fireman Max, did you have a great time?" I asked.

"Yesssss......" Sob.

"And you want to go to another hotel?"

"Yesssss......" Sob.

I knew they had arrived home when I heard crying at the back door. Max walked in, wailing.

I have realized, by now, that saying things like "You are too old to cry over that!" does nothing. With Sabrina, I talk stuff through and she calms down. With Max, I employ distraction. This also can work with Ben, who will laugh through his tears when Sabrina makes a motion like she's drinking from a glass and says, "Glug, glug, glug!" How she figured this out, I don't know. It only works when she does it.

I had an idea.

"Welcome to Hotel Max!" I said.

Max paused. "Fireman Max!" he said, sniveling.

"OK, welcome to Hotel Fireman Max!" I said.

He gave a little smile, but looked dubious.

"I think you will enjoy staying at Hotel Fireman Max," I continued. "All of our rooms have views. We have a special room just for you, with a firefighter blanket and fire trucks."

Now he was really smiling.

"And we have a breakfast buffet, with chocolate yogurt!" I said. "OK, let's get your luggage up to your room."

Then I shouted, "Bellboy!" and nobody came since Dave only responds to "Honey!" and dire threats to take out the garbage, but Max giggled.

"OK, I shall take your luggage up to your room myself," I said. So I grabbed the Lightning McQueen suitcase and Max and I walked upstairs.

"This is your room, number 31!" I announced. (It's the number of his favorite fire truck.)

I threw open the door. There were clothes all over the floor and his bed was unmade. "Housekeeping has not yet been to your room to clean up," I noted, "but you need to get to sleep anyway." Max agreed.

So we got on PJ's. I said, "Room service is available, would you like a piece of cheese?" And he did, and I got him a slice presented on a fancy plate and he ate it.

Once his teeth were brushed, the tears came again because Fireman Max had to make sure I was fully aware that he needed to go to a hotel. For two nights and three days, he informed me.

"I promise, you will go to a hotel again!" I said, noncommitally.

Oh, he was onto me. "Next week?" asked Fireman Max, hopefully.

"No, not next week, but we will go," I promised.

He lay his head down on his pillow, calm, and I felt relieved. I kissed him good night and returned to my regular evening duties as Head of Operations.

The Special Needs Blogger Weekend Link-up wants 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: 10 Little Monkeys: Special Needs Mom Edition

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. 

A shopping cart for kids with disability, now at Target

Special needs parents everywhere have been psyched to hear that Caroline's Cart, a shopping cart with a large seat on the front for kids and adults with disability, is going to be in Target stores nationwide. And there are two great stories behind this.

The company's been testing the carts in stores since early 2015; starting March 19, the majority of Targets will have at least one Caroline's Cart, and some will have more. Says mom Brianne Fuller of Brighton, Michigan,  whose boy is pictured above, "It made our evening shopping trip a breeze...and my son LOVES it!"

The cart is named after the daughter of Drew Ann Long, who has Rett syndrome. When Caroline was seven years old, Ann realized she'd soon outgrow the typical shopping carts. Drew Ann designed the cart, applied for a patent and roped in pros to help it come to life. Today the cart can be found in supermarkets, shopping centers and malls around the country and in Canada.

Some more awesome: The idea to bring Caroline's Cart to Target came from a Target team member who has a child with special needs, and suggested it to Store Operations.  

Photo: Brianne Fuller

10 Little Monkeys: Special Needs Mom Edition

Ten little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
Oh, honey, sorry. Sad to say but the insurance company probably won't reimburse you for the doctor's bill, they denied us because they said it was an alternative treatment.

Nine little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
At what age did he start jumping on a bed?

Eight little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
You should try cutting gluten out of his diet. We tried EVERYTHING and it's the only thing that worked.

Seven little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
I saw these bed rails in the Enabling Devices catalog but they cost $17,000, I'll bet there's a way you can make them yourself. 
 
Six little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
Hope the little guy is OK!!! Our IEP is tomorrow. Do you have any advice?

Five little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
SQUEEEEEEE! He's jumping! So impressive! So happy for both of you!

Four little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
My little monkey does that, too, and I asked the PT and she gave me some exercises for him so he'd stay on the bed. So now there are even MORE exercises I won't get around to doing. #sigh #guilt

Three little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
Hi, this is your mother-in-law, it's like I'm always telling you: He'll grow out of it. You worry too much.

Two little monkeys jumping on the bed
One fell off and bumped his head
Mama asked the mom group and the mom group said:
Maybe music therapy will help? Or art therapy?

One little monkey jumping on the bed
He fell off and bumped his head
Mama asked the mom group and the mom group said:
Go have yourself a nice glass of wine.

No more monkeys jumping on the bed!

Requisite disclaimer: This book doesn't actually exist, but it's all real. Inspired by the 10 Little Monkeys parody on Reddit.  

What's your favorite baby part?

I pretty much love everything about babies, always have. But I am a sucker for their squishy, smoochy lips, especially right after they've eaten and when they are sleeping. I am a kissy mom in general, as I've previously confessed, but I cannot resist Ben's itty-bitty baby lips. That little indent above his top lip is also yummy.

Baby thighs are a close runner up for favorite baby part. Ben is still filling out, and it remains to be seen whether he will achieve Sabrina and Max's level of thigh pudge. Their rolls had rolls.

While I'm on the topic I also love baby lashes. Ben barely had any fringe when he was born and as the weeks went by, I saw them grow in. Boys always get the best lashes.

And, wait, I'm kind of obssesed with Ben's little button nose as well. When I first saw it in an ultrasound it looked abnormally wide and I said something to the technician who noted that it was both filled with fluid and smooshed and I should stop being a neurotic pregnant woman. (She didn't actually say that last part, but I know she was thinking it.)

I will stop now and not even gush about his cheeks, rubber-band wrists, toes, fingers, chins, pot belly or his little naked butt when I take him out of the bath. Oh, and the gigantic bald spot on the back of his head that makes him look like a little old man. And, almost forgot, the back of his neck. There are rolls there, too.

Now that I have mentioned my favorite baby parts, which is to say all the parts, what are yours?

It takes a village to plan a special bar mitzvah

Max's bar mitzvah is April 10. Am I calm? Kind of. The sleep deprivation has lulled me into a stupor. Thanks, Baby Ben! I'm also grateful for the people who've been lending a hand since we first started planning.

I knew I wanted to create a special ceremony for Max, but I wasn't sure where to start. Orlee Krass, director of education at Matan (a nonprofit geared toward educating Jewish children with special needs) met with us to brainstorm ideas.

I wanted to get Max a tallit (prayer shawl) from Israel. Paula, a longtime blog reader I've met in real life, was headed there on a trip and volunteered to go shopping. She and her cousin David hit a bunch of stores; we exchanged countless messages and emails until she found the perfect one. Her mother pitched in, too; Paula recently came home from work to find a voicemail message reminding her not to forget to mail Max his tallit.

My brother-in-law's sister bought a kiddush cup (a special cup for a blessing over wine) for Max in Israel.

Over the years, I've done work with the Tonka toy truck people. They generously sent Fireman Max eighteen fire trucks that will be used as table centerpieces (we'll tie red, black and silver balloons to the ladders). Afterward, Max is donating them to a local children's hospital. I think? Because right now, every time he looks at the giant box of them he says, "Mine!"

I needed someone to crochet Max a kippah with his Hebrew name on it for the ceremony. A friend from college, Monica, saw my request on Facebook—and offered to do it.

I also needed someone to make a "Fireman Max" kippah for the party. Max's art therapist, Diane—who used to work with him in his old school and re-found us through this blog—Googled and discovered the Etsy store Judaica Art by Molly. Molly made an incredible one for Max featuring his favorite fire truck, #31 (big reveal to come, Max wants to keep it a surprise—unless you happen to stop by our house, in which case Max will make me bring it out to show you).

My sister proofread the invite list, and my best friends Wendy and Hedy proofread the invite. My mushy brain could not be trusted.

After we got the invites, they sat on the floor of our living room for weeks because I couldn't find time to stuff them into envelopes. Hedy and Jill, another college pal, came over and did the job. Ben offered moral support from the comfort of his swing.

I may or may not have asked Sabrina and a couple of friends she had sleeping over to put stamps on the invites.  

I needed a photo of the logo for Max's bar mitzvah transformed into a vector (I am still not sure what that is) for a drawstring bag we're gifting kids. I crowdsourced on a local Facebook group. Some guy named Paul said he'd give it a shot. I emailed him the photo. Minutes later, he zapped me the vector image.

I needed to check out the suits Dave and Max had on hold at Lord & Taylor. My friend Paola—we studied together in Florence, Italy as juniors—came along. I hadn't planned to shop for a dress for myself. Actually, I've been dreading it (see: recently had a baby). Paola grabbed a dress off a rack and said it would be a good one for me. It was The Dress! Squeeeee! Now I just need to lose 10 pounds. Can I outsource that?

I requested recommendations for a good tailor on a local Facebook community group, and found a lovely woman who came to the house and helped alter Max's suit. My handsome boy.

Months ago I asked for ideas for a "mitzvah project" Max could do—a good deed in honor of his bar mitzvah. I got a lot of great suggestions, including one from Anony Mous who suggested that Max make a presentation at his school about fire safety. Max loved that idea. His speech therapist suggested he use both PowerPoint and his speech app, and we'll be working on that.

So thanks, all. We couldn't have done it without you.

And now: What should the baby wear to the bar mitzvah?!

Cerebral palsy news to know: You'll be glad you read this

There's a free Cerebral Palsy Tool Kit for parents.

The recently launched CP NOW Foundation publishes an 86-page guide for parents called The Cerebral Palsy Tool Kit: From Diagnosis to Understanding, the first of its kind for the CP community. It's comprehensive and very useful, with everything from an exploration of clinical diagnosis and treatment to advice from parents of kids with CP. I wish I'd had this back when Max was first diagnosed and I felt completely overwhelmed. The PDF version is free for signing up for the mailing list of CP NOW—or you can purchase the paperback on Amazon. Get it!

Botulinum toxin can help decrease spasticity.

Although doctors have been using the treatment for years for people with cerebral palsy, there haven't been significant studies to back it up. Max has gotten injections in his hands several times to loosen his thumbs, and it's worked. Researchers recently took a look at the effect of Dysport (one brand of botulinum toxin) in 226 children with lower limb spasticity. The toxin produced statistically significant improvement in muscle tone, per the study published in the February 2016 issue of Pediatrics.

Cerebral palsy with intellectual disability is decreasing.

Although birth prevalence of spastic cerebral palsy has been stable, there's been a significant decrease in co-occuring moderate to severe intellectual disability, according to a study published in the 2016 Pediatrics journal that used a population of children in Atlanta as a sample. The researchers say the evidence of stability of CP is encouraging, but note that the lack of overall decrease merits more research and prevention methods. Cerebral palsy occurs in 2.6 children per 1000 ages 2 to 17, according to a new review of data published in the Annals of Epidemiology.

Children with cerebral palsy kick butt.

OK, there's no actual study on this. That's because the proof is right there in front of our eyes.