Friday, February 28, 2014

Special Needs Blogger Weekend Link-up: Back, by popular demand


It's the Special Needs Blogger Weekend Link-up. Share a post! Heck, share two.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Wake Me Up When It's Spring

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

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

Happy linking!

Thursday, February 27, 2014

Moms of kids with disabilities: Are we the world's toughest moms?


There's a new commercial out from Olympic sponsor P&G in honor of the upcoming Paralympics (the opening ceremony is March 7). Part of their Thank you, Mom campaign, it shows a variety of athletes, and applauds the moms who enable and encourage them.



The end of the commercial states, "The world's toughest moms raise the world's toughest kids."

Raising tough kids: Yes, that's what we do. But I got to thinking about whether moms like me really deserve the honor of being the toughest moms on the planet.

Realities I'm sure many of you can relate to: I have been through a certain trauma with Max's birth, and I've become stronger for it. I have learned to be pit-bullish when necessary about getting Max the therapies he needs—and getting the insurance company to pay for them. I work; juggle medical and therapy appointments; and tend to Max's basic needs including dressing, feeding and bathing while teaching and encouraging him to help himself. I expend serious psychic and emotional energy getting people to understand Max and see him for the awesome kid he is, and lifting myself up when I'm dejected. And I am able to leap over tall buildings in a single bound! OK, not, though plenty of days I do feel like this:


At times, it is really, really hard. Still, I do not think of myself as particularly tough. Because I'm surrounded by a cushion of support—from my husband, sitters, and the therapists and medical specialists on Team Max. Because I have resources, from the amazing school Max attends to the fact that insurance does cover therapies (in theory, at least). Because Dave and I both work and we have means. (For the record, he's one tough dad.)

Sometimes, I think about moms of children with disabilities in developing nations; they face mountains I never will. Unicef's 2013 Children With Disability report noted that in many countries, children with disabilities (there are an estimated 93 million of them worldwide) are largely institutionalized, abandoned or neglected. Perceptions of them are rooted, as the report notes, "in negative or paternalistic assumptions of incapacity, dependency and difference that are perpetuated by ignorance." These kids are often cut off from public services and resources.

Imagine having to be an advocate for your child in one of those countries. Imagine having no Early Intervention or insurance coverage or people in your life who see your child's potential. When you consider that, it seems like those women are the world's toughest moms. (One way to help: the UNICEF fund for kids with disabilities in developing countries created by Lucy Meyer, 14, who has CP; she's raised $120,300 so far.)

This isn't a competition, though. So, OK, I'll take the props: I'm one of the world's toughest moms. But make no mistake, I am also one of the lucky ones.

Images: Screen grab/P&G Thank You, Mom Sochi 2014 video; Lynda Carter, Wikimedia Commons

Wednesday, February 26, 2014

What it's like to get a home backup generator


We've been talking about getting a generator for years, but Superstorm Sandy clinched it. We ended up in a hotel for a week, until the power came back on in our neighborhood. Many of our neighbors stuck it out in the 45-degree weather, but Max's muscles get tight because of his cerebral palsy and we didn't want him to be uncomfortable. The electricity in our area is generally not very reliable—it has a lovely habit of going out for a few hours during storms. And we need to make sure our sump pumps work; flooding from Hurricane Irene destroyed our basement. Generators can be even more critical for families with medically-fragile kids who use machines that require electricity, like ventilators.

We looked into standby generators, aka the kind that hook into your natural gas line. During Sandy we'd seen the people at gas stations—gas cans in hand, waiting in line for hours to fuel up their portable generators—and a home backup generator seemed worth it. We decided on a Kohler. From the research I'd done online and reviews I'd read, it was clear they're the best, most highly-rated kind of generators. Friends who have them only have good things to say.

ConsumerReports magazine (I subscribe, because I am geeky that way) gives Kohler home generators top ratings for ease of use, power delivery, power quality and noise. I'd met up with some Kohler staffers at the BlogHer conference; I got in touch and we received a discounted generator so I could share our experiences. It arrived this fall and sat on our driveway, all 535 glorious pounds of it.

Neighbors joked (half-joked) they'd be at our house during the next storm. As long as they bring chips and dip, we'll let 'em in. (Half-joke.)

We got the Kohler 20kw, a fully automatic generator powerful enough to rev up the entire house within 10 seconds after the power goes out—all appliances, the heat or AC and Sabrina's hair dryer because it's a basic life necessity, of course. It has a commercial-grade engine; a corrosion-proof enclosure; and a five-year, 2000-hour warranty. (If we ever run it for more than 2000 hours, I may just consider a move to Mars.) The suggested retail price starts at $4197. We spent about half that on a hotel stay. So we figured it would pay for itself in the upcoming years (global warming: it's real). Remodeling magazine estimates that you recoup 68 percent of the cost of a standby generator if you sell your home.

Getting a generator installed is a process. Not a hard one, but it's not insta-gratification. First up: Finding an authorized Kohler dealer to do the job. Super-nice Kenny Halligan of Halligan Electric Co. was our man. If you're getting a portable generator, give it a test-run before you're dealing with a storm situation. More portable pointers: They're for outdoor use only—not for enclosed spaces, like a garage, and need to be kept away from windows and doors. Don't operate them on a combustible surface, either, like a wooden deck; place them somewhere level, with the exhaust directed away from building. Also, note: You most definitely do not want to connect one to your barbecue, as a Kohler rep said she'd seen. Eep. 

Our utility company had to determine that the flow of gas into the house was enough to fuel our home and the generator. Check! Then we needed to decide where to put it. Our local building code requires generators be placed a minimum of 5 feet away from a house, plus a 2-foot setback from your property line. (I know I sound like an expert but sorry, I am not for hire.) Our generator ended up in the narrow yard on one side of the house; there was just enough room. Kenny filled out the permit paperwork, we dropped it off at our town's building department, and two weeks later we had it in hand.

Kenny and his crew spent the better part of the day at our house, installing the generator on a concrete pad and doing a massive amount of wiring. They turned off the electricity for a few hours, which was no biggie given that we aren't going to be without power ever again.  

The install involved digging a major hole to connect gas pipes to the generator. If your kids like dirt, they will really enjoy this part.

The automatic transfer switch (aka the brains of the generator), which connects to the electric box in our basement. 

A plumber came by on another day to run the gas piping from the basement to the generator (all in all, the install cost us about $4000). Then we had to have the electric/gas company install a larger meter, to accommodate a bigger flow of gas should we use the generator. Happily, that was free, probably because they'd be glad to have us using vast amounts of gas. Last, four different town inspectors stopped by at various points—the building inspector, fire inspector, plumbing inspector and electric inspector. (Did I mention this was a process?) Everything passed with flying colors.

Our generator kicks on for 20 minutes once a week, every Friday, to make sure it's humming along. It's reassuring to hear it come on. I've heard portable generators and they are loud. At 69 decibels, the Kohler 20kw sounds like how the air-conditioning HVAC does when it starts. (As a comparison, leaf-blowers range between 95 and 102 decibels). Honestly, even if it sounded like a combination of a techno concert, a construction site and an erupting volcano, I wouldn't have cared. I just want our house powered up when the next storm hits. 

We received the OnCue Generator Management System ($262), which is Windows compatible (you can have your Mac piggyback onto Windows). It basically connects your generator with Kohler's servers in Wisconsin, though sadly it does not import cheese from there. With OnCue you can see real-time power operation, make sure that all components are working and even turn the generator on and off via your computer. Once a week the OnCue system sends a "Generator is running" update to my email, which is very reassuring to read if you are at work and a major snowstorm is happening.

There's an OnCue Plus app, so you can check your system on your iPhone in between rounds of Candy Crush.

We're considering an annual service contract with a local Kohler dealer, who will help with monitoring and do an annual check-up. Most important, if our generator ever needs a tune-up in the midst of a storm, we'll be on a priority list. Otherwise, maintenance during a power outage is pretty straightforward: You check the oil with a dipstick, just like a car, after the generator has been on for about 8 hours, and change it after 100 hours of every use. (If you can't get to the generator because the wind will blow you away, at the very least check the oil after 24 hours of running). The tank holds three quarts of oil—ideally, 5W-30 Full Synthetic Oil.

Kenny makes sure Dave knows how to check the oil, because I'll be hiding under our comforter if we ever have another superstorm.

You can get a quote for a Kohler generator from a local dealer with this form. I'm glad we haven't had reason to use ours yet, but I have no worries—just peace of mind. And, sure, come on over during the next storm...as long as you bring chips and dip. 

We received a discounted Kohler 20kw generator and OnCue, but the opinions and peace of mind expressed here are solely my own. 

Tuesday, February 25, 2014

I shouldn't have asked that


Commuting home a couple of weeks ago, our train passed one that had derailed. One of my neighbors was sitting across from me, and we talked about it. I wondered out loud: Could a train derail while it was on an overpass and fall? When the ticket taker walked by, I asked. "Most times when trains derail it's on ground but yes, it could derail on an overpass," he said. I grimaced, and he grinned at me and said, "It's like my mother used to say: If you don't want to know, don't ask."

I definitely have that problem, especially when it comes to Max. From the second we knew something was wrong, I asked doctors and nurses a million questions including ones that didn't do Max or me any good. "He's arching his back, is that normal?" (No.) "He's thrusting his tongue, is that normal?" (No.) Have you ever seen a baby who had a bilateral stroke?" (No.) "Is it worse to have a stroke or be a preemie? (Can't answer that.) 

Over time, I learned to quit torturing myself like that, although it's not possible to control information people share. Like the neonatologist who informed me that the only moms he'd ever met who had babies with strokes, as Max did, were crack moms. Or the recent form I got, attached to a poster Max had drawn at camp that won an award. It stated that his level of function is "mid," which I assume means mid-range.


It was a shock to see. I never think of Max that way. 

The best piece of advice I ever got about raising a child with special needs was to look at how he's doing, not at his medical records or the X-rays of his brain with all the grayish-white blobs where the damage occurred. The film and paperwork are tucked away in a closet. What I see is a sunny kid making progress as best as he can, a kid who's defied the doomsaying doctors. Cerebral palsy is just one part of who Max is; it doesn't define him.

When we go to annual visits to the pediatrician, neurologist and physiatrist, I bring a long list of questions about Max's care and treatment. I am constantly emailing his teacher and therapists about stuff that will help him. But I don't ask about things that will only distress me.

Given this, I am really perplexed about why I did the following. While we were having lunch at home recently, Sabrina glanced at Max and said, "Why are his eyes so big?" She meant his pupils. Sure enough, his were dilated. And it wasn't just the lighting we were in because after that I noticed that his pupils were always in that state. It wasn't something I'd ever picked up on before.

I emailed the neurologist. Was it the seizure meds, I wondered? No, he wrote back: "It's his baseline neurological tone, as a consequence of the strokes."

My heart sank. I started thinking about the brain damage, and whether neurons had formed new connections and networks around the damaged areas. What would his brain look like if we took X-rays now? Dave and I have never wanted to, and the neurologist hasn't thought it necessary. If Max's brain didn't show improvement, we'd get upset. And if it did, well, that wouldn't tell us anything we didn't already know about his functioning—or give us clues into his future. But there I was, sadly pondering how Max would be different if the damage had happened in different parts of his brain, or if the stroke hadn't been so large.

The sad, dispiriting, freakout thoughts I try to avoid.

I was annoyed with myself for asking. I'd had a feeling what the answer would be, and I didn't need to know. The information tells me nothing about Max, his abilities and who he is. 

I haven't been thinking too much about it since, nor have I been staring into Max's eyes to check on them. Well, maybe just a little bit. Soon enough, I hope, I will bury that piece of information in my brain, like the medical records and X-rays lying in the depths of the closet. And once again, all I'll see is Max.

Image: Flickr/SarahSphar

Monday, February 24, 2014

On giving in to your kid's quirks


Max has this habit of stomping his feet when he's hanging out in the family room, watching TV. He also does it when he's at his desk in his room. For years, he's loved kicking up a storm in the bath for years, but the floor stomping started last fall. "Max, stop stomping!" is a common refrain heard around our house.

I know does it because he likes the sensory feel of it. "He stomps to the music!" Sabrina has noted, which is true—when a movie has a theme song, Max's stomping is right on time, which means he might someday be a great candidate for that off-Broadway show STOMP.

All that aside, the stomping is seriously annoying. It reverberates throughout the house. We have a glass ornament on our bedroom window and the vibrations make it tinkle, along with the chandelier. We've tried to put a pillow beneath Max's feet, but he just kicks it aside. Nothing but foot-to-floor contact will do. Ideally, in the living room; he doesn't like to do this anywhere else. 

"Max, one of these days something will fall and break," I've warned him. Max has just shaken his head. I've let it pass; it's one of his quirks, and it comforts him. I mean, this habit's more intrusive than ones of the past, like when he used to make us write "Max eats spaghetti sauce!" on every picture he drew or when he insisted on sleeping next to a set of plastic purple tableware. Still, I thought, what's the big deal.

Broken stuff, that's the big deal. 

A few weekends ago I was sleeping in or, rather, I was lying there wishing I could sleep because Max was stomping away in the dining room. I heard a crash, and ran downstairs. A framed photo had fallen off the wall, and the glass broke. Max was in tears. "Sorry!" he kept saying. "Sorry!"

"Max, when you stomp it makes stuff shake—that's why it fell off the wall," I pointed out. He wailed louder. He promised he wouldn't stomp anymore.

But the next morning: STOMP STOMP STOMP STOMP STOMP. STOMP!!!!!!!

"Max, you promised you wouldn't stomp!" I reminded him.

"NO!" he announced.

"It's not OK to say 'No,'" I told him. "You are going to keep breaking things."

He got more cautious. A couple of times, after he'd been going at it in the living room, I watched him get up and adjust the two framed pictures that stand on a Singer sewing machine I inherited from my dad. Max was making sure they weren't going to topple over.


But responsible stomping is still stomping, and I figured he was surely going to break something else. Continuous reminders weren't helping. Punishment didn't seem fair: Stomping fulfills a particular need he has. There's a fine line between accommodating your kid with special needs and catering to him, and this behavior fell on the boundary between the two. I can't and won't ever completely understand what it feels like to have cerebral palsy. While I've tried massaging Max's legs in the morning to see if looser muscles make him skip the stomping it hasn't worked, but still: The impact might help his legs, always a bit stiff, feel better.

I sure wasn't going to secure or move every breakable piece in our living areas. I was not up for seeing a behavior therapists just yet, because Max has enough therapists in his life, thankyouverymuch. So I decided to once again let him deal with the consequences (though I did move expensive vases to a secure location at Ft. Knox).

Sure enough, as Max stomped in the living room Saturday morning, I once again heard a crash and a wail. The photo of Sabrina on the sewing machine had fallen to the floor. The glass was intact, but the wooden frame had come apart.

Max was inconsolable for a long time. "I'm sorry!" he said, again and again. He kissed me. He hugged.

"Max, if you keep stomping you are going to keep breaking things," I said. "Are you going to stop stomping?"

"Yes," he promised, between tears.

I super-glued the frame back together. (So much cheaper then a therapy session!) (Not that I'm ruling that out.) (I could probably use some sessions, too.) So far, no more stomping.

Now, if someone has any ideas on how to get Max to quit repeatedly watching the Taco-dile scene in Cloudy With A Chance of Meatballs 2, I am all ears.


Friday, February 21, 2014

Special Needs Blogger Weekend Link-up: it's post-tastic


It's the Special Needs Blogger Weekend Link-up, and you know what to do: Call our insurance company and demand that they pay Max's therapy bills. Oh, wait. I meant, this is where you should share a favorite post.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Why I Changed My Speech App Voice To Bad Guy

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

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

Happy linking!

Thursday, February 20, 2014

The wheelchair icon gets a makeover and museum fame


The International Symbol of Access is one of the world's most familiar images. But it represents old perceptions of people with disabilities and badly needed a new look. At least that's what artist Sara Hendren, a mother of three including a son with Down syndrome, and Brian Glenney, Ph.D, an assistant professor of philosophy at Gordon College (and sometime graffiti artist), decided back in 2009. And that's how an updated version was born.

BEFORE


AFTER


The two launched the Accessible Icon Project and began tacking up transparent stickers with the new design over old icons throughout Boston. Technically, it wasn't legal to do, but they were on a mission. Soon they were sending stickers to people around the country. People started using stencils to paint the icon on surfaces.

The revamped icon recently became part of the Museum of Modern Art's permanent collection (major honor!) and is on display in the A Collection Of Ideas exhibit for a year.

This summer, New York City started replacing the old icons with the new one. The cities of Austin, Texas and Burlington, Massachusetts, have adopted it, along with a bunch of universities. The project's co-founders have heard from people around the world who are changing the old signage. The hope is the new icon will become the standard (it's compliant with the Americans with Disabilities Act).

The grass-roots campaign has its critics. "We've certainly had people who say, 'It's just an image, and I'd rather you spend your time lobbying for other kinds of concrete change,'" Hendren has said. For her and Glenney, though, this is so much more than an image update. They hope it will, in their words, "provoke discussion on how we view disabilities and people with disabilities in our culture."

I asked Brian Glenney exactly how the new icon could help change mindsets. "The symbol is a call to action, much like the symbols of other movements—the pink triangle used by ActUp! or the raised fist employed by many political groups," he explains. "The more active and independent figure in the accessible icon says 'access now!'

"When Sara and I started this project, we saw it as a needed intervention, an editing not only of signage but of the preconceptions society has of people with disabilities. If the icon does anything to help society re-imagine the more engaged role that people with disabilities might play in society, then it will help pave the way for their inclusion in education, the job market and society in general."

A-men. Anything we can to to raise awareness and portray disability in a more positive (and active!) way is A Good Thing.

You can buy a copy of the sticker, or get a free download, here.

Images: New accessible icon, The Accessible Icon Project, owned by Triangle; old accessible icon, Wikimedia Commons

Wednesday, February 19, 2014

7 ways to encourage play for kids with special needs


When Max was a tot, one of the biggest challenges I faced was helping him play. He wasn't able to easily grasp toys or push buttons, so I'd enable him as best I could. Playing with toys is a fundamental right of childhood, and no way did I want Max to miss out.

Max's occupational therapists have regularly recommended Melissa & Doug toys, particularly the puzzles; some have large, wooden knobs that are easy to grasp, others have super-chunky pieces. Their stuff is also great for pretend play and creative projects (our easel has lasted for years). In recent years, I've recommended their toys in gift guides, including this one with reviews from kids and last year's holiday wish list. The company recently came out out with a Toys for Special Needs catalog, based on input from a child psychologist and educational consultant and organized by therapeutic and skill criteria. So I'm glad to have them here, sponsoring content.

For advice on enabling play for kids with fine-motor challenges, I hit up occupational therapist Ellen Martino, a pediatric occupational therapist in Stratford, Connecticut, with 25-plus years of experience. These are her top tips.

First up: Make sure your child is in a stable position.
"This is really important for a child who has challenges with fine-motor skills," says Martino. "If a child has to exert energy to sit in position and work at keeping his trunk upright, it makes it difficult for him to use his hands to explore toys. You can have your child sit on the floor, positioned between your legs, or prop him up against a couch with rolled towels or cushions on either side." When Max was a tot, I'd seat him on the floor tucked into the nursing pillow. "Older kids do better sitting at a kid's table, with a chair that allows their feet to be flat on the floor," noes  Martino. "Some children may need an adaptive chair with arms to provide additional trunk support."

Give a little massage.
"Kids who have fine-motor-skill issues don't get all the sensory input other kids do when they're touching, grabbing, holding and crawling," says Martino. "So before play, it helps to 'wake up' their hands. An easy thing to do is hold your hand against your child's hand, palm to palm. Then give some deep pressure, moving from the base to the fingers."

Try a warm-up activity.
"Use something as simple as a small, soft squishy ball, squeaky rubber toy or even a bean bag to help get a child's hands ready for play," says Martino. "If a child's hand is fisted, gently help him open it so he can hold the object, then help him squish or squeeze it. For a child with low-tone, try helping him to use his hands to push into the toy while it is on the table or floor, providing some resistance and weight bearing." Another good get-going move: Take a medium-size ball, like the Froggy Kickball. Place the child's open palms against it and help them to bang on the ball or push it.

Place toys in a vertical position. 
This encourages visual attention and an upright posture and improves shoulder stability. "If you have a sturdy easel, you can put a puzzle on it. Or buy a little ledge, attach it to the wall of your playroom and rest puzzles or magnet boards on it," suggests Martino. You can also place toys on a slant board on a table, or make your own; Martino suggests using an extra-wide three ring binder, and putting a piece of rubber drawer liner beneath it to keep from slipping.

The Barnyard Animals Jumbo Knob Puzzle is Max's all-time favorite.

Think beyond a toy's "intended" use.
"It's the process of the play—and the fun!—that's key for all children, especially a child with fine-motor-skill challenges," says Martino." A child with limited fine-motor skills might get frustrated if, say, he can't yet roll a ball and knock down pins in a bowling play set. But he might very well enjoy holding onto a pin and banging it on a rug. "That can help build his confidence," says Martino. "He's enjoying making a toy do what he wants it to."

Remember, not all play has to be therapeutic.
"Parents of kids with special often feel pressure that play has to be somehow therapeutic," says Martino. "What's important to remember is that all types of play are important for children, no matter what they are doing. If a child is really into it, laughing and having fun, he may be moving around, exploring, gaining sensory input and working on balance and visual attention. Maybe he will use his affected hand more by trying to reach for, push against or lean on something. Play is a wonderful way to strengthen fine-motor skills, but most important is that a child is having fun and is successful."

Involve your kid in clean-up.
As Martino says, "It gives them fine-motor practice, teaches them to sort, fosters independence, helps kids see a clear beginning and ending—and teaches them to help clean up!"

To get 15 percent off at MelissaAndDoug.com from today through February 26, 2014, enter the code LOVETHATMAX15 at checkout.

This post has been sponsored by Melissa & Doug LLC. For more information, please visit MelissaAndDoug.com

Tuesday, February 18, 2014

Shared laughter is the best medicine


Max and Dave were reading a book of knock-knock jokes on a train the other day, and Max cracked up. I laughed, too, and so did a bunch of people sitting around us. (New Yorkers: not such a jaded bunch.) Later, Sabrina read to him, and we all started laughing again.


Even when I'm having a crappy day, or I'm not in the best of moods, laughing with the kids literally makes my heart feel lighter. Laughing with Max has the added bonus of sharing a connection that's both emotional and cognitive. 

During the first year of Max's life, I still cared about milestones (eventually, I stopped that self-torture). Smiling and laughing were the only milestones Max hit on time; he readily responded to my raspberries. It was as if God was finally giving me a break. I desperately needed to know he wasn't suffering from the stroke he'd had, even though doctors said he wasn't, and I desperately needed to feel some sense of normal parental happiness. Max's chortles were the only light moments in those dark months. (Also: Dave's catchy ditty "Max makes big DOOOOODIES!" sung to the tune of nothing at all.) The endorphin rush was healing.

Laughing at your mom doing something silly is one thing; sharing a laugh with her another. It says, "We are both acknowledging this is rather amusing." I remember one time, several years ago, when Sabrina was lying on the kitchen floor and having a meltdown of epic proportions, complete with flailing limbs and "YOU DON'T LOOOOOOOVE ME!" screeches. Max gave me a look and we both started giggling, yet more proof those wheels were turning in his head. He knew she was being ridiculous.

Lately, Max is really going for laughs. He knows that his newfound ability to wink kills me, and so when I tell him it's time to turn off the iPad or put away his toys, he winks. And suddenly, I am helpless with giggles.

Last night, as I walked Max into his bedroom to get his pj's on, he informed me that I hadn't knocked on his door. So I went back out, shut the door and knocked. No answer. I knocked again. Still, no reply. I knocked and knocked. 

"Go away!" said Max.

I opened the door, and Max and I laughed and laughed until tears came out of my eyes.

It felt so good.

Friday, February 14, 2014

Special Needs Blogger Weekend Link-up: Valentine's edition


It's the Special Needs Blogger Weekend Link-up, your place to share a post you love (or at least really, really like) and find others to adore. And you don't even have to send cards or chocolates.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Lightning McQueen Is My True Love.

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

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

Happy linking!

Thursday, February 13, 2014

The best Valentine's card ever ever ever


Sabrina and I were at CVS this weekend, browsing the Valentine's Day cards. She was thinking of getting one for a friend. Suddenly she said, "Mommy, look!" She picked up a Lightning McQueen card.

Lightning McQueen is Max's Valentine. He has eyes for nobody but Lightning. Suzanne from Special Needs Mom told me about these printable Lighting McQueen Valentines, and we'll be doing those tomorrow (yet another snow day). (Our sixth.) (But who's counting.)

"Mommy, I'm giving this to Max!" Sabrina said.

She was so genuinely excited. And that made me seriously happy.

Something's changed between Sabrina and Max in recent months. They play together more. They laugh together more. He calls for her when he needs help. She goes out of her way to come to his aid—like if he's struggling to pick up something, she'll do it for him. At night, she wants to kiss him good night after I do and sometimes, she lies down next to him till he falls asleep. I've overheard her telling him, "Max, you're so cute!"




Maturity? Has she secretly been reading this blog? I don't know.

Of course, they are not totally copacetic, because they are siblings of the human variety. "Mommy! He's annoying me!" Sabrina will complain. Or, "Ewww, he got drool on me!" Max roars when she teases him. Half the time, I have no idea what the heck they're fighting about.

But they are mostly getting along. They're even in cahoots together. Last night, I plucked Max's iPad out of his hands because he needed to go to sleep. I plopped it behind a pillow in my room, then ducked into the bathroom. When I came out, the iPad was gone. Sabrina had given it back to Max. The two of them were snickering.

Max is going to squeal when she hands him this card.

Me, I'm already swooning.

Happy Valentine's Day to your sweeties.


Wednesday, February 12, 2014

How to respond when people ask what's wrong with your child

This post is part of the ongoing Group Therapy series. I post a question a reader sent, give some thoughts and ask you to share your own.

"I work in Early Intervention in California," the email read. "I work with a family who is exploring conversations to have with people who ask, 'What is wrong with ******?' They also want to begin to have simple conversations with their son about how he can explain his CP, and what his older brother might say to his friend when asking why little bro can't walk yet or why he uses a walker or Rifton. The child is going to enter preschool in an inclusive environment. He is very social and talks up a storm. Any recommendation would be helpful."

Like many parents, I could write a book on this. But, here goes. I'll break it down:

How to respond when others ask "What is wrong with your child?"

Let's put aside the use of the word "wrong" for a hot second. Obviously, it's a parent's personal preference whether or not to disclose their child's diagnosis. I've always been open about it: I'll usually say, straight up, "He has cerebral palsy." Depending on the situation, I might go on to explain that Max had a stroke at birth. Over the years, it's gotten easier to react to negative wording like "wrong" because I've learned that I can use the opportunity to help educate people about CP. So I'll add something like, "I just want you to know that to me, nothing is 'wrong' with Max. He's an awesome kid, once you get to know him."

When kids ask what's "wrong" with Max, I usually say that his muscles move a little differently than theirs do, but in many ways he is just like they are. And then I'll encourage them to say "hi" to Max or vice versa.

Then again, you do not have to explain anything at all.

How to explain a child's special needs to a sibling

Keep it age-appropriate and realize it's an ongoing, life-long conversation—so don't put too much pressure on yourself to give the "right" response. When Sabrina was young, for instance, I'd tell her Max had a "boo-boo" on his brain. As she got older, I explained his brain had gotten hurt when he was born. "Since your brain controls your muscle movement," I'd explain, "sometimes it's hard for Max to move certain parts of his body." Then I'd end on a positive like, "But he's doing really well!" or "He's made a lot of progress!" I always point out the stuff Max can do, and emphasize his abilities.

I just got Views From Our Shoes: Growing Up With A Brother or Sister With Special Needs, a book of essays, and plan to read it together with Sabrina. Ditto for Out of My Mind, a popular novel about a girl with cerebral palsy who refuses to let herself be defined by it. Note: There are Sibshops programs nationwide for kids who have siblings with special needs.

How to explain a child's special needs to him

It's been awhile since I've discussed the topic with Max. Last spring, we had a conversation about the term cerebral palsy, and he decided that Lightning McQueen has it, too. Max doesn't think of himself as talking or walking differently than other kids; he just thinks, this is the way I am. He hasn't asked questions about CP, and I'm going to follow his lead on this one. Good books we have read about CP include Ceana Has CP, Rolling Along and I Am Not Weird! (here's a dad reading it to his daughter):


What advice to you have to offer these parents? Please, share.

Have a question you want to crowdsource? Email lovethatmax[at]gmail.com

Tuesday, February 11, 2014

Knock knock, who's there?


Sabrina's been acting like a teenager since she was about two years old, so it's surprising it took this long for her to post a "Knock before entering" sign on her door. She's not that hardcore about it, and if I walk in and forget to knock it's no biggie. If I walk in and insist that she clean up her room, however, it is a biggie.

A couple of weeks after Sabrina put up her sign, Max decided he needed one and she made it for him. Sure, the sign looks all playful, but make no mistake: Max means business.


If you walk into his room without knocking, he tells you to leave and knock. This includes therapists who come to the home, our babysitter and the handyman who recently came to fix a window. Max likes the whole routine; you knock, he says "Who is it?", you state your name and he says "Come in!" He never turns anyone away, except once after he'd had a school snow day and he wanted a second one and I knocked on his door in the morning, he said "NO!"

Max likes pointing out that all the letters in his sign are in capitals. He has this thing, for the past few months, that his name must only be written in capitals. I will see what the teacher has to say about this at the parent-teacher conference. Although it must be said that for a while in the 1990s, Prince chose to be known as this:

At least "MAX" is pronouncable.

This weekend, I heard both kids snickering and when I finally rolled out of bed, this sign was on our door. I am represented by a flower and Dave, by sushi.


Unfortunately, neither kid is taking it seriously. BUT we have a lock. He, he.

Monday, February 10, 2014

Family game night, Olympic style


Like most families, there are certain activities we love to do together. I take none of them for granted because for a long time, Max didn't have the attention span or interest in participating. Now
we have Wii night, movie night and dance party night (here's a vintage 2009 version).

Max doesn't do board games, even the Lightning McQueen version of Trouble—he's just not interested. So Dave and I play with Sabrina (Pengoloo is a fave). It's always bummed me out that we don't do this as a family, like I did as a kid. One of the pleasures of parenthood is enjoying stuff with your kids that you have fond memories of from childhood.

Growing up, our family watched the Olympics together. Saturday night, I got to relive that. I turned on the short ice-dancing program. Both kids were mesmerized; Max kept signaling "more" (he can say the word, but he gets lazy). Sabrina said "Whoa!" a lot and tried to replicate the moves. The kids' picked their favorite performance (Meryl Davis and Charlie White). Then slopeside snowboarding came on and Max squealed, he was so excited.

We talked about Sochi and Russia. We spoke about the different countries the snowboarders came from, and what it means to win gold, silver or medal. We discussed how much practice it takes to do what the snowboarders did. We laughed that Sage Kotsenburg was chewing gum during a run, and perplexed the kids when we called him Spicoli. We wondered what was up with the guy knitting at the start gate (it was Finland's coach, and his team decided he should to it because it was funny).

Max squealed when it was Max Parrot's turn; he's always so psyched to know of anyone named Max, or to see it on packages (DuraMax light bulbs!), our laundry machine detergent dispenser ("max load") and pools.


"Max, would you want to snowboard?" I asked.

"No! Scary!" he said. I had to agree. Watching someone do a Backside Double Cork 1620 Japan knocks the breath right out of you.

Both kids stayed up late, so we could see Sage Kotsenburg score gold. We sat on the couch, Max on my lap and Sabrina on Dave's, and cheered.

Win. 

Image: Flickr/jeffykabaruska

Friday, February 7, 2014

Special Needs Blogger Weekend Link-up: A very special place


It's the Special Needs Blogger Weekend Link-up, a special place to share special posts about special kids and special feelings and all things special. Isn't that special? And why does that word start looking so weird when you see it seven times in a row?

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Snow Days Are The Best Thing Ever But Maybe Not For My Mom

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

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

Happy linking!

Thursday, February 6, 2014

The paradox of disability inspiration and may I admire you, please?


En route home from work last night, and it was a particularly fun commute because of the snowy weather, I had plenty of time to catch up on Facebook. I read this update from a young woman with cerebral palsy:

"So I am at the grocery store doing my errands minding my own business & some random lady comes up to me & asks about my leg & back brace. I explain that I have cerebral palsy & few other conditions that require such tools. She then goes on to explain that her kids also have CP & I am inspiration to her that I have graduated from college & am independent. I am far from inspiration I am just doing what I need to do to live my life."

I knew what she meant. But I knew what that mom meant, too.

In the last year I've read several posts and articles about so-called "inspiration porn," a term coined by Stella Young, editor of the excellent Australian disability news site Ramp Up. In We're Not Here For Your Inspiration she describes the phrase as "an image of a person with a disability, often a kid, often doing something completely ordinary like playing, or talking, or running, or drawing a picture, or hitting a tennis ball—carrying a caption like 'Your excuse is invalid' or 'Before you quit, try.'"

A meme Young points to as an example of inspiration porn

It's not limited to people

The purpose, Young contends, is so that "non-disabled people can put their worries into perspective. So they can go, 'Oh well if that kid who doesn't have any legs can smile while having an awesome time, I should never, EVER feel bad about my life.' It's there so that non-disabled can look at us and think, 'Well, it could be worse...I could be that person.'" She goes on to note, "Using these images as feel-good tools, as 'inspiration,' is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them. For many of us, that just is not true."

One of the things I want most for Max is for others to see all of him, not just his disabilities. To see the person. Inspiration porn turns kids and adults with disabilities into fantasy heroes, further widening the gap between them and others. Another kind of inspiration porn: exalting kids with special needs for participating in sports teams or going to proms. As the woman who writes The Squeaky Wheelchair puts it, "Inspiration porn allows disabled people to become a commodity, shared, tweeted, emailed, and cooed about for the sake of a public that wants to be 'inspired' by them, to see their everyday accomplishments and participation in life as an uplifting exception and not a rule." (Cara Leibowitz of Crazy Crippled Chick also has an excellent post on this, Explaining Inspiration Porn To Non-Disabled People.)

And yet: Here on the blog, I am always gushing over Max's feats. Even the smallest accomplishments are a big deal to me, like when he poured something last weekend. I share because I am proud of Max, and because I write to inspire other parents. Years ago, when Max was born, there weren't many blogs around and all I could do was message other moms on an e-loop for parents of babies who had strokes to ask how their children were doing. When did their child crawl? Walk? Could their child talk? How was his cognition? I needed to hear there were kids doing these things and making progress, because doctors hadn't left us with much hope. Now, when I get emails from parents saying that Max is inspiring to them, it makes me seriously happy. I keep the messages in a Gmail folder.

And yet: There are times when people who don't know our family, or Max, marvel over him, and it's made me uncomfortable. This past summer, Max was splashing around in a pool and a mom standing nearby said, "I just wanted to tell you, your son is amazing." I mean, I know that years ago he was terrified of pools and he overcame his fears, and years ago he couldn't keep his balance but now he ambles around in the water, but she didn't know all that. She just saw a kid with disabilities splashing in a pool, seemingly qualifying him for an Olympic medal.

And yet: I find inspiration in teens and adults with cerebral palsy doing everyday things. Ones who write blogs, go to college, have jobs, live independently. If I saw an adult with CP in a pool swimming, I'd be psyched. I am inspired because of the hope they give me that Max will do the same when he is older.

A commenter on that Facebook post I read on the train noted, "What I find weird is stuff that runs something like, 'You should never complain about things that are hard for you again because this person with a disability climbed a mountain.' In other words, the person with a disability is being depersonalized and being made to stand in for ALL HARDSHIP EVER. In this case the person is directly seeing you as a successful person with a disability similar to her kids, meaning that she sees you as a person first, which is pretty rad." The woman who'd written the post responded, "That is a really good way of looking at it. Thanks for that perspective."

I hope the adults with disabilities out there who rightly rail against inspiration porn can cut parents of kids with special needs a little slack. I don't mean to objectify you when I gaze admiringly as you browse in the bookstore (although rest assured, I wouldn't come up to you and gush), or when I tweet to an adult blogger with CP that I find her inspiring. I don't see your life as an "exception"—actually, I want my boy to someday have your life, the kind where he does everyday things like grocery shopping. If I consider the ordinary extraordinary, it's only because I am looking at you and envisioning my son.

Image: Flickr/Lady-bug

Wednesday, February 5, 2014

Where are the zombies with disabilities?


Dave and I sometimes worry that the kids will walk in on us while we're doing it. I'm talking about watching The Walking Dead. We got into the hit AMC series last month, and have been catching up on episodes after Max and Sabrina go to sleep.

If you're not familiar with it, The Walking Dead is about a world taken over by zombies, aka walkers. It has incredibly gripping plots, a compelling cast of characters and the best-looking zombies in the history of zombies. We can't wait till the mid-season premiere this weekend.

So realistic is the series that it's made me reimagine the real world. I have wondered where in the house we would hide should zombies show up at the front door, and whether I'd ever have the guts to bash one's head in. At night, I've woken up startled because Dave's snores sound like the noises zombies make. I have pictured a herd of zombies walking along our street, including ones in wheelchairs and ones wearing the kind of foot braces Max has.

But that's not how it goes on the show: I haven't spotted any roaming zombies with disabilities. And that, I'd love to see. Zombie wheelchair users rolling around. Zombies using walkers or forearm crutches. Reality TV, this isn't—the producers could work them in. A couple of walkers have been found lying on the ground, cut in half, but they don't exactly count as amputees. Feasibly, many could have cerebral palsy; their limbs are stiff and they walk like Max does when he's trying to move quickly, side to side. So he can play a zombie with cerebral palsy on TV when he grows up, if he so desires. (Here's another candidate: this teen born with no arms and legs who's been pranking shoppers.)

There's been a human with a disability on the show, the very sane and strong Hershel, who loses part of a leg to a zombie. In a Q&A on the Walking Dead blog, the actor who plays Hershel noted, "When Glen [the showrunner] told me they were going to chop my leg off, of course my first thought was, 'Oh, there I go!' But just the opposite: He said he wanted someone with a disability and I understand that."

Awesome. But this is my fantasy. And I'd really like to see zombies with disabilities among the gloriously creepy crowds of 'em. 

Not a walker—a wheeler

As the parent of a kid with special needs, I spend a fair amount of time on inclusion: trying to get Max involved in local activities, programs and camp, encouraging so-called typical kids to play with him. Advocating for zombie inclusion actually isn't a high priority for me, shocking as that may be. It's part of a much bigger wish: For my son to grow up in a world in which people with disabilities are included in all aspects of society and pop culture. Even zombiehood.

Max has enough challenges fitting in. The fact that our entertainment and media rarely feature kids and adults with special needs contributes to his exclusion—and to people seeing him as an "other." That's how it feels when they stare. Max is a perfectly charming, handsome kid but he's gotten looks of horror when he's let out a bit of drool. It's as if people just saw a zombie.

Plenty of people aren't exposed to kids and adults like Max in their day-to-day life or pop culture. People with disabilities are largely missing from TV programs, movies, ads, music videos and magazines. Yet they all feature racial diversity (there are black zombies on The Walking Dead). The Disney Channel recently included a gay couple for the first time, on Good Luck Charlie. But disability? It's the last minority group that's virtually ignored.

There's been some improvement in recent years, including more kids with disabilities in ads and a increase in characters with them on TV. Later this month, NBC will debut Growing Up Fisher featuring a father who is blind (the actor playing him is not). The recently cancelled NBC crime series Ironside had a detective in a wheelchair. There's also Max in Parenthood (who has autism); Becky Jackson on Glee (Down syndrome) and Artie (who's in a wheelchair); The Michael J. Fox show (Parkinson's disease, which can cause disability); and Walt Jr on Breaking Bad (cerebral palsy).

Still, they're a minority. Out of 796 characters regularly appearing on 109 scripted shows on major networks in 2013, only eight had disabilities—up from four from the previous year, says GLAAD, the media advocacy group behind the report on characters representing minority groups. Because prime-time disability is such a rarity, it's often a distinguishing characteristic. As NBC's description of Growing Up Fisher notes, "Take Mel Fisher.... He's chopping down trees, showing his daughter how to drive, and then playing football with his son... except that Mel's blind." When Diesel hired hipster fashion blogger Jillian Mercado for an ad campaign, one attribute about her made headlines, and it wasn't her sense of style: Fierce Woman In A Wheelchair Stars in New Diesel Ad.

If wheelchair users in ads were common, if there were more characters who were blind, they wouldn't be news-making. They'd be normal. Which leads me back to The Walking Dead. Where are the zombies with disabilities? Not at school, day programs or the Special Olympics, that's for sure. 

The on-screen depictions of disability I sure don't want are ones like the so-called "cerebral palsy scene" in The Wolf of Wall Street. In the movie, Leonardo DiCaprio—a white-collar crook—ODs on Quaaludes and enters a stage of being high that he dubs the "cerebral palsy phase," in which he lies on the floor, writhing, crawls outside and tumbles down a bunch of steps. It's "perhaps the single funniest moment on screen this year," said one reviewer. Ellen DeGeneres called the Quaalude scene "genius" (here's a video clip, start at minute 3:08). "I'm gonna get cerebral palsy drunk now," noted a commenter on a site. People who didn't find the scene amusing include my friend Dawn, parent to a little girl with cerebral palsy. She sat there fuming in the movie theater as people around her cracked up.

Sad, isn't it, that the most memorable movie mention of disability in recent history is as the butt of a  joke.

Yes, I know: Casting disabilities in movies and on TV in a more positive light—and creating more characters with them—won't wholly change perceptions toward people with disabilities. As if. Disabled zombies sure as heck won't accomplish that, either, exactly why I won't be starting an "AMC: Include zombies with disabilities!" petition on change.org. But including people with disability in entertainment, media and zombie-ness would be one more way to make them a natural part of society. (As natural as zombies are.) (Assuming a post-apocalyptic world still counts as society.)

Walker with walker

I'd love a Pixar movie that features a main character with a disability—one that doesn't define him. Or in a movie directed by someone cool, like Quentin Tarantino or Wes Anderson. I'd like people with disabilities on Modern Family and Girls. I'd like them integrated into a plot on Victorious or any of the tween-y shows my kids enjoy. 

I want to see people like my son in all parts of life. And, er, death.

EXCITING UPDATE 

Alert reader Claire shared this zombie wheelchair user from Sean of the Dead. Inspiring!

Image of zombies from The Walking Dead: AMC Networks. First zombie composite: istock and Flickr/Grmisiti; second zombie composite: Flickr/cambodiatrust

Tuesday, February 4, 2014

Tracking devices for children with autism and other special needs


The front door to our house opened, and Max walked in. "Max, what were you doing outside?" I asked. He'd decided to stand on the porch and wait for some friends to show up; I hadn't heard him leave. Our house has an alarm, and I'd never bothered to put on the alert that tinkles whenever a door is opened. After that, I realized I should.

Max does not wander often, but he has been known to bolt when the mood hits. We had one heart-stopping moment at the airport last year when Dave and Max went to the bathroom while Sabrina and I hung in the sitting area at the gate. All of a sudden, I happened to see Max walking down a corridor alone. Dave had turned around for a few secs and just like that, Max was gone.

It's when I first got a sense of what some parents of kids with autism have to contend with. The tragic story of Avonte Oquendo—a 14-year-old with autism who wandered away from his Long Island, New York school in October and whose remains were found last month—fully brought the issue to the public eye. And now, the U.S. Justice Department will pay for voluntary-use GPS tracking devices for children through the Byrne grant program. The trackers cost about $85 each, and will be distributed via programs local police departments set up.

Children with autism are at particularly high risk for wandering, as many parents well know. It's estimated that half of children with autism are prone to wandering, according to a 2012 article in the journal Pediatrics. The majority of fatalities—60 since 2008—have involved drowning.

The press has largely referenced the Justice Dept. program as being for children with autism, though it is also for kids with other conditions and developmental disorders that put them at risk for flight. Devices can be worn on the wrist, clipped onto shoelaces or belt loops, kept in a wallet or sewn into clothing.

As is often the case, it took a tragedy for change to come about. Avonte's death was in vain, no matter what. But the bill created in his name surely save children's lives.

It seems like it will take some time before the tracker programs are in place. Police departments will be in charge of distributing the trackers, via schools and organizations who will have to apply for them. Make sure your child's school is aware of this.

Image/istock

Monday, February 3, 2014

Those special need parent OMG moments


"He likes purple, purple and purple." That's me responding to the lady at the art studio who asked which color Max would want to use. We were at Sabrina's birthday party yesterday, and Max wanted to paint.

Art birthday parties are always a good reality check about how much progress Max has made using his hands and fingers. When he was little he couldn't grasp the paintbrush independently, but now I watched him happily mzkinb purple strokes on the canvas. Come to think of it, when he was little birthday parties at places like that used to scare him and it took a lot of coaxing to get him in, let alone paint.

Dipping the brush: Another amazing feat of fine-motor skills

Then Max decided what he really wanted to do was fingerprint. Again, this was wow-worthy. I watched him isolate one finger, then spread all of them wide. It used to be that Max's hands only relaxed like that while he was sleeping but lately, I've seen him purposefully open them up.

Both kids' hands are yummy; I have been known to nibble on them. (Not when they are full of paint.) 

Sabrina was busy making Sculpty creations

The most surprising thing of all happened when Max decided to tap into his inner Picasso (or Rauschenberg or Monet or whoever painted in purple) and dump water onto the canvas, so he could play around. I have never seen him pour before. I had no idea he could do it. But, look:


He held onto that plastic container for dear life but he did not drop it. It took a lot of dexterity and control, and I was awed, proud and just plain thrilled. Yes, it might have been easier for him to use two hands but he doesn't always do that spontaneously. His right hand is weaker, and unless I prompt "Two hands, Max!" he likes to keep the right one resting on his stomach, a la Napoleon Bonaparte. Though Max is far cuter.



Who knows, Max may have already been pouring at school; I'll have to ask at this week's parent-teacher conference. I've sometimes found, over the years, that Max is a lot more independent at school than he is around me and Dave. Once, years ago, I came to visit his class during lunchtime and walked in to find Max sitting at his desk, contentedly spooning food into his mouth. "He feeds himself?!" I said to the teacher. At home, Max only wanted me or Dave to feed him. "Of course!" she answered, puzzled by my reaction.

I will forever remember the art studio as the place where I first saw Max pour. He can't be far off from learning how to whip up drinks. I'll have mine shaken, not stirred.




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