Monday, January 30, 2012

The Santorum Effect: What Rick's showing the world about special needs parenting

Today, Rick Santorum returned to the campaign trail after taking a weekend absence to be with his 3-year-old, Bella, who had pneumonia. She made what he called a "miraculous turnaround." Still, Bella's health is a constant concern for the former Pennsylvania senator and his family. Bella has Trisomy 18, a genetic disorder that can cause abnormalities in the heart, brain, stomach and other organs.

Rick Santorum has come under fire for campaigning with a daughter who has such significant issues. "Her life is measured in days and weeks," he said at a dinner speech in October, going on to acknowledge how often he'd been on the road. "I feel like I wouldn't be a good dad if I wasn't out here fighting for a country that would see the dignity in her and every other child," he added. Santorum is opposed to health-care reform legislation, which he considers a threat to kids like Bella, even though the law's supporters note that it would help children with disabilities or illness because insurance companies will no longer be able to impose annual or lifetime limits on coverage.

Last month, when Christiane Amanpour interviewed him, she asked how he can justify continuing his campaign, given his low poll ratings and his daughter's situation. "Well, I don't worry about the polls," he told her. "I worry about what I'm trying to do to be the best father and best husband I can be."

Sarah Palin came under fire in 2008 for running for office with young kids, including Trig, who has Down syndrome. Nasties called Trig a "prop," and the same has been said of Bella. Yet Rick Santorum has zoomed the spotlight onto something many of us grapple with: having a work life and caring for a child with special needs.

The family/work conflict Santorum is facing is extreme, to be sure. He has a child with a rare and serious condition, and his job is trying to be our next president. And yet, his situation is common to many of us who work and have kids with special needs. Like Santorum, you are often torn between the two—and sometimes criticized for your choices.

I returned to my job as a magazine editor when Max was three and a half months old, with the agreement that I could work from home on Fridays. We hired a wonderful nanny. Of course I had major reservations about leaving Max; he'd had a stroke at birth, and he was at risk for all sorts of delays and problems. But I had a lineup of therapy sessions in place, including ones on Friday and Saturday. I thought it would be healthy for me to not be home all the time, given the extreme anxiety I had. I welcomed the distraction of work and the potential to feel in control of something, because I felt so helpless about making Max "better." Also, I liked my work. I had always planned to be back in the office after my maternity leave, and I didn't let Max's special needs derail me.

My parents were blatantly dubious about my decision. "Don't you want to take off more time to be with him and help him?" a close friend asked, her disapproval implicit. I was thrown. Yes, I wanted to help my son. Desperately. No, I did not think I had to be at home with him every weekday to do that. "I think I'll be a better mother if I work," I told her, and left it at that.

I worked full-time until Max was almost 7, when I got laid off. It was a welcome severance and I've stuck with freelance ever since. But I do not regret having worked when Max was younger. It was the right thing for me to do.

Rick Santorum feels that the right thing for him to do is campaign for the presidency. While I don't agree with his politics, I respect his decision. Santorum is showing the world that parents of kids with special needs are like any parents: We don't always sacrifice our work lives for the sake of our children, nor should we be expected to. Contrary to popular belief, we are not saints. Holding us to a higher standard of morality only makes us more likely to be denounced for making real-world choices.

As parents of kids with special needs, we sometimes face tougher predicaments than other moms and dads. Still, that doesn't give people the right to question our decisions—or our love for our children.

Photo: Campaign ad screen shot

Do I know how to party or what?

Saturday night, we went to a party at my friend Sarah's house. Every year, she has a New Year's bash the last weekend in January, and it's a great thing to look forward to; there's always a great mix of guest and hors d'ouevres.

Sarah is a parent advocate and special education advisor and is a special needs parent, too; her company is New York Special Needs Support. It was a crowded party but inevitably, I found the other special needs moms. Like heat-seeking missiles, we always make contact.

In the course of the party I told a mom about Max having a stroke at birth; empathized with another mom about the challenges of finding time for yourself; listened to a mom's story about her son, who has heart issues and who was hospitalized for two years; traded notes on NICUs and therapists; and learned about an excellent neuropsychologist in our area, David Salsberg at the Rusk Institute of Rehabilitative Medicine at New York University. I am thinking it would be good to take Max to visit him, to help us better understand how he learns and what we can do to encourage him.

Also: Wine. White wine.

I left feeling relaxed, content and really glad to have met these moms and spent a Saturday night with them.

En route home, we passed by a bar I used to go to a lot when I was single. I stared at it, remembering how much fun it was to hang out there, drink beers, mingle.

It felt like another lifetime.

I've gotta say, I did not miss it.

Flickr/Sifu Renka

Friday, January 27, 2012

Share your child's can-do creativity!

Before I had Max, I had a defined sense of what "coloring" meant for a kid. Like many things, it was based on my experiences as a child. Coloring was drawing in a coloring book or freehandedly making pictures of stuff—flowers, a house, a robot, whatever. Random scribbling was for toddlers.

Then I had Max. And soon enough I realized that 1) The mere act of grasping a crayon could be considered a feat and 2) Random scribbling could be a means of expression for a child of any age.

For years, Max wasn't into coloring. More specifically, he wasn't into using his hands to do anything that required extended grasping. Therapists often recommended bulb-like "finger crayons" as well as adapted crayon holders. In the last couple of years, Max has gotten pretty good at holding onto the chunky kind of crayons. We have amassed quite the collection of purple ones.

Max's purple period, I call it—similar to Picasso's blue one. And just like that world-renowned painter, Max chooses to paint monochromatically on a white medium. Which is to say, the kid only wants to color in purple on white paper. I can't begin to express the delight he takes in coloring in every single millimeter of the page purple.

Once Max has finished his purple masterwork, he will inspect it and if there is even a teensy speck of white peeking through, he will color it in. The above piece of artwork is rare in that he decided to leave some white space, and it will surely someday go for a very high bidding price when it gets auctioned off.

Purple inspires Max.

Sabrina, meanwhile, is all over the rainbow. She never colors the same thing twice.

To me, their drawings are equally awesome.

I submitted both pieces of artwork to the 2012 All Kids Can CREATE campaign, sponsored by CVS Caremark All Kids Can. It's done in partnership with VSA, The International Organization on Arts and Disability. The purpose is to showcase the positive impact the arts can have on all kids. It's open to kids with and without disabilities, ages 5 to 15, who live within the U.S. This year's theme: "What inspires me."

Max's painting is entitled "Purple No. 1,000,000."

Sabrina's painting is "Under The Sea." She's inspired by creatures in the ocean, she said, because "they are free and have fun and it's so beautiful there."

You have until Sunday, April 8 to submit the kids' artwork here. It's super-easy: just snap a picture and upload. All submissions will be featured in an online gallery and considered for display in a national exhibit. It'll go on view in Washington D.C. this August, and will feature two pieces of artwork from every state and the Distric of Columbia. A group of young artists will be invited to a reception in Washington, D.C. Note: Art teachers who submit their students' artwork are eligible to receive $1500 for use in their classroom.

Please join Max and Sabrina and enter your kids' creations!

What kind of stuff is your child into creating these days?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to making life better for children with disabilities. "Like" them on Facebook!

Thursday, January 26, 2012

Help A Mom Out: What's your best advice for a new mother?

Every week, I get emails from new moms who read this blog. They often say they're heartened to see how well Max is doing, which is heartening to me. But they're anxious about their babies. They write about struggling to come to terms with what happened, how isolated they feel from friends and family (and even their husbands), how overwhelmed they are. They want information on what they can do to help their babies. They want comfort.

Yesterday I heard from Jewel, a mom of three. Her youngest, Jemma, is 13 weeks old; she had a brain bleed in utero. Jemma has some weakness in her right arm and hand and isn't lifting her head up yet on her tummy. She's on seizure medication. "She now smiles and coos and loves to interact with people and be talked to. You can tell she wants to laugh," wrote her mom. "Any advice with what to do with Jemma, watch for, bring up to doctors/neurologists, tests to ask for and how to better interact with her, I'd love. It's taken me 13 weeks to reach out and look for people/information. I realize it's much better to relate and talk with people who have experienced the same things than to try to conquer/live it alone."

I shared some thoughts with her, and then I said I'd reach out to all of you to see what you wanted to say. Some of the stuff I think is key during that first year (and afterward) when you're a new mom to a child with special needs:

• Get your baby lots of therapy (aka therapy up the wazoo). We had Early Intervention come and do an assessment on Max a couple of weeks after he was home for the NICU, and before that kicked in I was taking him to private therapy. Doctors couldn't tell us what Max's future held, but they were unanimous on one thing: getting babies therapy during the early years of their life, prime time for development, is key.
• Get yourself help. Take up friend's and family's offers to babysit or do things around the house. If you can swing it, hire a sitter once a week or more. You've been through a trauma; you need time to process, heal and get your favorite kind of frozen yogurt, if that's what makes you feel good.
• Find ways to enjoy your child and block out the worries. I've written before about dressing Max up in super-cute outfits and doing photo shoots with him. Going to the mall where ladies in stores would coo over Max helped, too. It focused me on his baby deliciousness and distracted me from the medical hell.
• Don't O.D. on doctor visits. When Max was an infant I made the mistake of making appointments with doctor after doctor, searching for answers about what the future held for him. Nobody could say for sure. Then I met a doctor who did give me his opinion. He said Max's future looked "ominous." I cried hysterically. After that, I mainly stuck with our kind, encouraging, realistic yet optimistic pediatric neurologist. He gave me hope. That's what I needed most in that first year with Max.

What information and/or words of encouragement do you have for this mom? I know she'll appreciate hearing from you.

Tuesday, January 24, 2012

You didn't have to say that

Dear Mom I Recently Met,

So, there was something I didn't bring up when we were chatting the other day. Because I was honestly stumped. Our conversation was going great until you mentioned your child had some issues. "It's mostly sensory stuff," you noted. "But compared to your son, he's normal!"

Ooomph. My heart lurched, my mouth kept talking. "It's all relative!" I responded. And I went right on conversing with you, even as my head processed and reprocessed what you'd said.

I am not a shy person. I hesitated to tell you how unnerving your words were because I didn't know what to say, and I also didn't want to sound defensive. I sometimes get a little paranoid that moms of so-called typical kids think they have to treat me differently because I have a kid with special needs.

Now that I've thought it over, though, I don't think I was being overly sensitive. That was a pretty shocking thing to hear.

Listen, I know you didn't mean it in a hurtful way. In your mind, I'm guessing, you didn't want to come off as if you were making light of Max's challenges. Sensory issues vs. cerebral palsy may very well seem like a cold vs. cancer to you.

But in my mind, your words made it seem as if Max were the farthest thing from normal. And that was painful to hear.

What's often hard for parents to understand is that Max isn't totally different from other kids. He may not speak like many kids do and his hands may not work as theirs do but if you can look past his disabilities, you'd find a kid like many others—a kid with a great sense of humor, a love for cars, trains and all things that go fast, a whole lot charm and all sorts of other awesome.

Perhaps, too, there was some denial going on here—as if you wanted to connect about your son's issues yet at the same time confirm that, unlike me and my child, the two you do not inhabit Planet Special Needs. I understand. I know denial well. Sometimes, it comes in handy.

Still, there's no point in speaking those words.

Next time we meet up, I'd love to talk like any moms do. No comparing our kids' issues, no thinking about them as "normal" or not. Let's just connect as two moms, doing the best we can.

Monday, January 23, 2012

Sibling rivalry is an excellent motivator

Yesterday, Sabrina had her 7th birthday party at a local cooking school. Kids made pizza, smoothies and ice-cream sundaes. And then, they taught them how to cook beef tenderloin for their parents! OK, I wish.

Sabrina's been counting down to the party for three months on a calendar in her room, and she was pretty out of her head with excitement.

Max kept insisting it was his birthday, and that he wanted a Cars 2 ice-cream cake.

"No, Max, today is Sabrina's birthday," I'd tell him.

"No! Ine!" ["Mine!"] he'd say.

"Max, its Sabrina's birthday," I'd say. "When it's your birthday you can have a Cars 2 party again!"


Repeat, repeat, repeat.

But he behaved admirably at the party.

First the kids colored

Then they pounded out dough, spread on sauce and sprinkled on cheese

Writing "Cars 2" in pizza sauce isn't that easy

My sis and my niece

Making strawberry-banana smoothies

And then, it was time to sing "Happy Birthday." After Max's meltdown at his party when everyone sang it to him, we were prepared. My brother-in-law took Max out of the room before we turned off the lights, and we all sang to Sabrina.

"I'm not smiling any more for you!" Birthday Girl told me, charmingly.

My kids have some serious birthday party issues.

Anyway, the kids all got ice-cream and whatever toppings they want, including gummy worms, which always gross me out because they remind me of drinking tequila in college.

Max requested his traditional three bowls of chocolate ice-cream.

Dave helped Max out as I made sure everyone got their chocolate or vanilla or both and tried to coax another smile for the camera out of Birthday Girl.

All of a sudden, I looked over to the corner where Max and Dave were seated. Max had a marshmallow on top of his ice-cream with a lit candle in it. He saw me and motioned toward the ceiling lights. I went over to him.

"You want to turn off the lights?" I asked, incredulously.

"Eeeyah!" said Max.

I could see where this was headed.

"You want us to sing 'Happy Birthday?!'" I asked, even more incredulously.

"EEEYAH!" said Max.

I didn't want to make a big deal out of this—it was Sabrina's party, after all. So I asked a staffer to just dim the lights. And then Dave and I sang "Happy Birthday" to Max. Actually, we sang "Happy Birthday to Cars 2," which is the name Max prefers to go by these days.

I really need to think of how I can better put this sibling rivalry thing to good use.

Saturday, January 21, 2012

L.L. Bean goodies, awesome new iced coffee, a helpful hotline and other Stuff Worth Knowing About

L.L. Bean celebrates their 100th b-day with gifts for everyone: Here's my friend Anne and the 13-foot-tall Bootmobile, which will be making its way around the U.S. I have the exact same boot, in a slightly smaller size; it's about 20 years old, which tells you something about their durability and/or my hoarding tendencies. To celebrate their 100th birthday, L.L. Bean is giving away free outdoor gear every single day; just visit the L.L. Bean page on Facebook and tell them what you need (a canoe, perhaps?). The company also just launched the Million Mission Moment; for every Facebook "like" and story, photo, or tweet shared about an outdoor experience, they'll donate to the National Park Foundation—up to a million dollars.

Awesome socks for kids who wear AFOs: I recently ordered from AFO Socks for the first time. Designed by an orthotist, the socks are the most comfy, well made and reasonably priced ones I've found yet. Max is hoping they'll come out with a Cars 2 pair.

Attention iced-coffee addicts! I run on the stuff, and I just found me a new fix: International Delight Iced Coffee, which comes in Original, Mocha and Vanilla. I got to try it at a MomTrends event and it is really, really good—creamy and not too sweet. It's made with skim milk, a glass is 150 calories, and a half-gallon is $3.99. Pour me a tall one!

A hotline for travelers with special needs: The Transportation Security Administration has a new toll-free hotline, TSA Cares, dedicated to passengers with disabilities and special medical needs. Call before you leave and a rep can make necessary arrangements with your local airport security. It's open 9 a.m. to 9 p.m. EST at 855-787-2227.

Props to Toys "R" Us: During its 8th annual fundraising campaign to benefit the Marine Toys for Tots foundation, they raised $4 million and collected more than 400,000 toys for kids in need.

List your favorite books, help a kid in need: Scholastic recently kicked off the One Million Bookprints for One Million Books campaign, an initiative to donate one million books in need through the nonprofit Reach Out and Read. When you join You Are What You Read, you make a "Bookprint"—a list of 5 books that have shaped your life. Both kids and adults can do it. For every Bookprint, Scholastic Book Clubs donates a book to kids in need, distributed through pediatrician offices around the country. On top of my list: If Life Is A Bowl Of Cherries, What Am I Doing In The Pits? I started reading Erma Bombeck in the fourth grade; she was damn funny, and she's the author who inspired me to write.

Enjoy the weekend!

Thursday, January 19, 2012

Stuff Special Needs Moms Say

"I know the doctor's booked, any chance you can squeeze us in?"

"Here, honey, look at this/try this/hold this/eat this/step on this/move this!"

"I'm going to ask for more PT, OT and ST at the IEP."

"What do you mean you can't give him any more PT, OT and ST?"

"You DID IT, honey!!!"

"What do you mean our insurance doesn't cover any more therapies?"

"Oh. My. God. My head is going to explode."

"He's delayed, but he's coming along!"

"We need a corner table in a quiet part of the restaurant, please."

"Please stop kicking the table with your knees!"

"Please stop whacking the table!"


"Yes, I did most of the therapy exercises you recommended!"

"He's pretty easy to babysit!"

"There was a significant infarct but it did not affect the basal ganglia, it was mostly in the parietal, occipital and parietal lobes. The brain stem was spared."

"NICE TRY, honey!!!"

"What kind of toy/therapy/app is that? Does it work?"

"Did he just say that word? I think he said that word. Didn't he?"

"Let me speak with your supervisor."

"They're real, and they're spectacular."

"I know an amazing pediatric neurologist!"

"Of course he's bright."

"TRY IT AGAIN, honey!!!"

"I'm calling about a refill for my child's prescription."

"I know you can do that, and I'm not doing it for you!"

"I need an aspirin."

"I need Xanax."

"I need a nap."

"A sensory gym's opening up near us? Psych!"

"Oops! Forgot to fill out that form."

"You are supposed to be using the iPad for the speech app, not YouTube!"

"Is it possible to die from filling out too many forms?"

"I can't find any shoes that fit his braces!"

"GOOD JOB, honey!!!"

"He gets a little wigged out by noise."

"Don't be sorry, he's a great kid."

Wednesday, January 18, 2012

Today was a good day for me

I walked in the door last night feeling like my head was about to fall off. I'd worked all day, hadn't spoken to the kids, had a pileup of emails, had a headache, had to get going on these new oral-motor exercises a therapist recommended for Max to help control the drooling that I've put off for weeks, had a phone call from Sabrina on the ride home in which she sobbed "I NEED YOU TO BE HERE NOW TO DO MY HOMEWORK WITH ME!" and then the train went into a tunnel and she got cut off and I thought, man, she is going to someday require therapy for that.

Deep breathing never helps when I feel like this at the end of a day. Pinot Grigio, somewhat. Going to sleep early is usually the best remedy. But I couldn't, I had work to do and laundry, too (in case you missed the video, I am the only person in my marriage on intimate terms with our washer and dryer).

The kids were upstairs with the babysitter, and I had a few minutes to regroup. A Post-it note I'd stuck up on a kitchen cabinet the other week caught my eye.

Sabrina had written it, I didn't even remember why. It said:

"Today was a good day for me."

And I thought, well, today was actually kind of crappy for me BUT if I could just think like a kid, maybe it wouldn't seem so bad. Kids don't think about the not-so-good stuff that happens during their day and recount it for you when you come home. No, they are psyched to share the awesome—the thermometer or purple painting they made in class, playing with their best friend at recess, the birthday kid who brought in ice-cream for everyone, a cool new website.

So I made myself think about the good parts of the day: cuddling with Max in bed this morning as he kept saying "NO OOOOL! NO OOOOL!" ["NO SCHOOL!"], Sabrina letting me choose her top to wear to school (seriously, she considers it an honor), doing a crossword puzzle on my commute, catching up with a friend from my last job, sushi for lunch (you may not know this about me but I am part woman, part tuna), a green light for a blog project I'd been hoping would happen.

The headache was still there, but as I stood in the kitchen zoning out in front of Sabrina's Post-it, I felt better. I saw the glass as half full—half full of Pinot Grigio, because you can bet I had some after the kids were asleep. I may have the occasional flash of self-help awareness but Tony Robbins, I'm not.

Meanwhile, I'm thinking today will be a good day for me.

What helps you on those crappy days?

Tuesday, January 17, 2012

Balancing therapy, life and fun for our kids

"Get him as much therapy as possible. Over-therapy him."

Those are the words of a renowned pediatric neurologist, spoken to Dave and me the week after Max was born. The doctor been called in for a consult; physicians at our hospital had never before treated a baby who had a bilateral stroke at birth.

I remember this doctor staring kindly at me as I scribbled his words. "You remind me of my wife, she's always taking notes," he said. He didn't give us false hope, but he did talk to us about the "plasticity" of baby's brains and how malleable they are.

I took his "over-therapy" words to heart. As a baby, Max had 12 to 15 sessions of therapy every week, seven days a week. Once he aged out of Early Intervention and went to school, we supplemented with private therapies at home; I regularly did battle with the insurance company to cover them.

Therapy has made a world of difference in Max's abilities. He wouldn't be doing as well as he is if it weren't for the smart, resourceful, dedicated, caring and just plain saint-like therapists who have guided both him and me over the years. We've used their suggestions to make therapy a natural part of Max's life, whether it's getting him to reach for a toy to stretch his arms or making a game out of massaging his mouth, to help relax it and encourage the flow of words.

These days, Max gets daily therapy at home after school. He doesn't have much time for other activities, and lately this has weighed on my mind. As Max has gotten older he's been increasingly receptive to trying new things, and I think he needs more balance—a little less formal therapy, a little more other activities. This goes against my instincts and the "over-therapy" mandate seared into my head in the NICU, and I've struggled with it.

This week, I made a move: I signed Max up for three January/February cooking lessons through a local group, and I cancelled three occupational therapy sessions. He'll grasp a spoon or whisk, stir, pick stuff up, and otherwise work his fine-motor skills. And then, of course, there are the social aspects—giving Max the chance to hang with other kids and have fun.

It would also be so awesome if he learned how to cook because I suck at it.

There's a bigger decision I've been mulling over. Last summer, I checked out a day camp with an amazing inclusionary program. Max would be given a "shadow"—his own counselor—and he'd be in a group with so-called typical kids.

Max is in school throughout the summer, and I'd have to pull him out for two weeks for this camp. That's been a huge "Hmmmmmm...." Missing therapy is one thing, but classes are another. Max is making good progress with grasping math concepts and reading. I know two weeks isn't that long, yet he's worked so hard for what he's learned and I'd hate to see him regress.

I emailed the camp director and asked if parents sometimes pull their kids out of school for camp.

"It all depends on their goals," he wrote back.

Dave and I spoke at length.

Our goals are for Max to achieve and succeed to the best of his abilities.

We'd also very much like him to be part of an inclusionary program; he's never tried one before. It could do a lot for his confidence and his sense of place in this world.

But we've also prioritized a new goal for Max: To have fun.

We're going to speak with his school about pulling Max out for camp. Hopefully, they'll agree it's A Good Thing.

Sunday, January 15, 2012

Help for husbands who don't do laundry (plus, win a Sears gift card)

So, the Kenmore people are having a Bloggers Summit in Chicago next weekend, and I somehow got invited and I'm going because I would much rather be caressing innovative appliances than actually using the ones I have at home.

They gave us a video challenge: Share your most unusual, yet practical, use of a common household appliance. And, wow, was I inspired:

If you create your own video demonstrating an unusual use of a common household appliance, you could win a $100, $50 or $25 Sears gift card. You can feature any appliance, from a toaster oven or blender to your fridge.

Email videos to lovethatmax[at]gmail[dot]com.

Submissions are due by Wednesday, January 18 by 5 p.m. CT; I'll send them along to Kenmore. This contest is open to U.S. residents only. Because the Kenmore people like Kenmore stuff, they ask that you cover any other brand names with tape. Uncompressed files are best, and the bigger the video format, the better.

Meanwhile, feel free to share the video with anyone in your household who might not be familiar with those big machines known as a "washer" and "dryer."

Friday, January 13, 2012

Should kids with disabilities be denied transplants? Some doctors think so

This is Amelia. She is 2 years old, almost 3. Her mom, Chrissy Rivera, describes her as "a happy child whose perfect day involves swinging in the Pooh swing, batting her favorite toy bug under her toy mat, and rolling around on the living room floor to bang her leg on the dog's head. In her eyes, her life is perfect. And after two years of having her in my life, in my eyes her life is perfect."

She sounds like any little kid, full of life and joy. Amelia's doctor, however, does not think she deserves to live.

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic condition that causes cognitive impairment. Other problems can include heart defects, cleft lip, hearing impairment, eye problems and seizures. Amelia has kidney failure. She needs a transplant within six months to a year.

Her mom, Chrissy, put up a horrific and heartbreaking post the other day about a doctor's decision to recommend against a kidney transplant for Amelia. Please, read what Chrissy wrote and show your support. I'll sum up what happened: She and her husband bring Amelia for an exam, as usual, to The Children's Hospital of Philadelphia. As Amelia sits sleeping between them, they start a discussion with a doctor and a social worker that they think will be about the transplant process. The doctor places two papers on the table. One has the words "mentally retarded" highlighted; the other has "brain damage" highlighted.

The mom gets distracted by those words as the doctor speaks and suddenly, the awful reality dawns on her. The doctor is telling her Amelia can't have a transplant because she is "mentally retarded." In his words, as Chrissy recounts it: "She is not eligible because of her quality of life...because of her mental delays." And it didn't matter if Chrissy, her husband or someone in their family donate kidneys; the doctor claimed CHOP won't do the transplant.

Enraged, tears rolling down her face, Chrissy debates him. She tells him she will fight for her child's transplant. And he says, "I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote."

A. Doctor. Said. This.

As a human being, I am horrified. As a parent, I am distraught. And as the parent of a child with special needs, I am out of my head with anger. The thought that a doctor, an ethics committee or a hospital—an excellent, well-respected hospital that treats many, many children with disabilities—could consider a child with cognitive impairment less worthy of a transplant than a child without impairments is mind-boggling.  

I Googled around and found an article on the topic printed in the journal of Pediatric Transplantation in 2006. Before the '90s, transplants were considered inadvisable for those with cognitive impairments—a "contraindication." The common thinking was that people with cognitive disabilities lacked the capability to handle post-transplant regimens, but some doctors also "felt ethically obligated to allocate organs based on the individual's quality of life."

In 1995 Sandra Jensen, a 32-year-old with Down syndrome, was denied a heart-lung transplant at two California hospitals because of her cognitive impairments. Advocates fought for her rights and she received a transplant at Stanford. She died 18 months later when her body rejected the medication.

The case made headlines, but did not shift perceptions. Years later, in 2004, a questionnaire about access to transplant centers sent to members of The Arc (the country's largest organization for people with intellectual and developmental disabilities) revealed that 80 percent of people believed that those with cognitive disabilities are discriminated against when it comes to to organ transplant operations.

Chrissy notes this is a prevalent problem in medical centers around the country. It's clear that if a major hospital like CHOP still upholds that people with cognitive disabilities shouldn't be eligible for transplants, not much has changed in recent years. There are many factors that go into the transplant decision, but disability should not be one of them.

The words that doctor used to describe Amelia, mentally retarded, are a clear indication that deep-rooted prejudices are at work here. The thinking that the "mentally retarded"—an antiquated, derogatory term—are lesser human beings is a perception that dates back to times when those with cognitive impairment were locked away in institutions. How doctors can still think that way is beyond my understanding. That doctors can think they are God, qualified to decide who has the right to live and die, infuriates me.

A child with cognitive impairment deserves the same chance at life as any other child.

There is a petition up at asking CHOP to allow Amelia's kidney transplant, and reminding them that kids with special needs are worthy of life-saving transplants. Sunday of Extreme Parenthood, mom to two sons with special needs, started it. Please, sign it.

Sometimes, it helps to contact the people whose job it is to care about a hospital's reputation. That would be CHOP's public relations team, and you can find their names and emails here. Pick one, pick 'em all, and let them know that Amelia deserves a transplant. At this point, it's not even a question of whether or not she goes on an organ waiting list—her family is willing to donate them.

I hope CHOP reconsiders. It describes itself as "one of the leading pediatric hospitals and research centers in the world" but this survival-of-the-fittest approach is the opposite of progressive—it is downright barbaric. If CHOP continues to deny Amelia a transplant, I hope she can have it done at another hospital.

And I hope that any hospital or medical center out there that considers cognitive impairment a "contraindication" for organ transplants reexamines its ethics, its heart and its soul.

Update: CHOP issued a statement on its Facebook page in response to the outrage expressed there, on blogs and on Twitter about Amelia and her transplant. It notes, "CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status." This certainly does not explain: 1) why CHOP would even consider cognitive status a factor, even if it's one of many and 2) what this poor couple were told by that doctor the other day. If what he said reflected his own warped point of view, and not the hospital's, then an investigation of that doctor is in order.

Update #2: On Monday, January 16, Chrissy told USA Today that she and her husband had been invited back to CHOP to discuss a transplant.

Update #3: On Wednesday, February 15, CHOP issued an official apology to the Riveras. The statement noted, "As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience." Amelia is under consideration for a transplant.

Update #4: On August 6, 2012, Chrissy Rivera announced that Amelia is officially approved for receiving a kidney transplant—and that Chrissy would be the donor.

Update #5: Amelia Rivera got her transplant in July 2013, receiving a kidney from her mother. As per a USA Today article about her on October 2013, she is growing and thriving.

Love That Max Rerun: Spaghetti As A Fashion Statement

I've written a whole lot of posts these past three years, because I am compulsive like that. In the name of environmental good I'm going to start recycling them! Er, no, I'm going to re-share some because they were that awesome! Er, actually, I need a break today. Enjoy, this one's from 2/9/09.

So, this woman walks into her boss's office with spaghetti on her shirt...

That's not the start of a bad joke. It's what happened to me the other day.

It was a particularly crazy morning at my house. I rarely leave myself enough time to get ready for work, so it's always this mad rush-rush-rush of plopping the kids down to watch Jack's Big Music Show, showering, indulging my brow-tweezing obsession for a few minutes (I'd probably stop to do that if I were running out of a house on fire), throwing on clothes and makeup, passing the kids over to the babysitter and zooming off to make my train. But that morning, I had a couple of bills to pay. I needed to put away some clean laundry the kids were somehow using as skates. And I never take time to eat at home but I was ravenous, so I grabbed a container of leftover spaghetti from the fridge and shoveled down a few forkfuls.

I walked into the office of one of my bosses shortly after I got to work.

"You have a noodle on your shirt," she said, matter-of-factly.

I looked down. There it was, a random piece of spaghetti hanging out on my chest. Not the entire loop of it, but a definite piece of one. I was about to make a joke about the spaghetti brooch I'd inherited from my grandmother but instead just muttered something about my busy morning (and, now that I'm pondering this, what DID I do with that noodle? Did I flick it onto her carpet? That's even less wise than walking around with a noodle on your shirt).

Curse you, Ronzoni.

I really need to wake up a little earlier.

That's actually not me above. Photo from istock/Kuricheva Ekaterina

Thursday, January 12, 2012

Our kids' secret strength

Last weekend, Sabrina saw a commercial for Soul Surfer and kept asking to watch it. The movie's about Bethany Hamilton, a pro surfer who lost an arm to a shark attack at age 13. I thought Sabrina was maybe a little young to see it, but I got it from Netflix because the lessons of overcoming physical hardships and doing things to the best of your abilities are good ones for her. We watched the movie together (two thumbs up!) and afterward we talked about how someone with a disability can be a great athlete. "You mean Max can go surfing?" she asked. "Maybe he will," I said, "especially if they come out with a Cars 2 surfboard!"

As I watched people cheer on Bethany, it occurred to me—as it has many times over the years—just how critical determination can be for people with disabilities. Despite the physical challenges Max has, with determination he has sometimes overcome them or compensated for them or, more often, figured out ways around them.

Max is blessed with an abundance of determination, something I've known since he was a tot and his chubby little hands struggled to grasp a toy. But he'd keep right on trying, finally getting ahold of whatever it was and clinging to it for dear life. When Max decided he needed to get around, he did it in the only way he could: commando crawling like a soldier, pulling himself along on the ground using his arms and legs. And man, he was fast. "You training him for war?" people would joke. It was a wonder to see.

Max's arms and legs needed to get stronger for him to crawl on his hands and knees; that happened when he turned 2. Getting a walker helped him learn to walk, but it was his spirit that propelled him. Max took his first steps at 3, and he's been going, going, going ever since.

In recent years, Max has determinedly learned how to use an iPad, ride a bike, read words and torture his sister. The other day, when we ordered in Chinese food, Max decided to try chopsticks. They weren't even the kiddie kind, attached at the top. You know how hard it is to grasp chopsticks, even if you're a fully functioning adult. Now imagine a kid with cerebral palsy who has serious fine-motor-skill challenges trying to use them.

But Max tried, tried, then tried again.

And he did it.

Sabrina, of course, was not to be outdone.

What sort of stuff have your kids been determined to do lately? I'd love to hear.

Wednesday, January 11, 2012

Great sites for therapy ideas for kids with special needs

This guest post is by Heidi Kay, co-founder of PediaStaff, Inc, a staffing company with offices around the country specializing in the placement of pediatric and school-based speech-language pathologists, occupational therapists and physical therapists. Heidi also oversees the PediaStaff Blog, newsletter, and the PediaStaff Pinterest board. It's a parent favorite for all its amazing pediatric therapy ideas, including the one above about painting with an eye dropper and a popular recent one about applying Velcro beneath a desk to help a child with sensory processing disorder. Heidi's not a therapist but, as she says, "I'm passionate about helping children with special needs. I am delighted to go to work each day so I can contribute to therapist preparedness and education through PediaStaff’s publications.” Here, she shares some of the best therapy sites she's come across.

I will open this blog post with a proclamation: It is a great time to have a child with special needs. Now, before you reach your hands through your monitors and smartphones to shake some sense into me, let me explain: You, dear reader, are so very fortunate to be a Web 2.0 special-needs parent.

Fifteen-plus years ago, I alternately cried myself to sleep and pulled out my hair over my son’s explosive behavior, difficulty with transitions, and his complete lack of social skills. The only diagnosis we ever got was ADHD and ODD. I was told it was “definitely not” autism. Although medication was a godsend, it never made a dent in his social skills. And since he didn’t “have” anything else the doctors would label, no-one ever mentioned occupational or speech therapy. I didn’t even know what sensory integration was, and had no idea SLPs worked with social skills.

Today, the Internet is an absolutely amazing (and sometimes overwhelming!) resource for learning and sharing about the joys and pains of parenting exceptional kiddos. In addition to large sites like Parents, there are a dizzying number of blogs out there that offer information, including wonderful ones by pediatric and school-based therapists geared toward parents.

As editor of the PediaStaff blog and newsletter, I have been privileged to work with a number of fantastic pediatric and school-based therapists who work during the day serving exceptional kiddos, then come home at night and share their knowledge as bloggers. As you might imagine, I tend to read every article we review through both a clinical lens for our readership and the personal lens of a special needs parent. So when Ellen asked me to compile a list of PediaStaff’s favorite therapy blogs written with parents in mind, I was more than eager to share! Here are just a few of your best bets:

Great Blogs For Physical and Occupational Therapy Ideas

· Kid PT Dr. Joni Redlich serves children in New Jersey in both clinic and community-based settings. Her blog, written for parents, focuses on therapy driven suggestions for children with mobility and sensory integration issues. Recent post: How Can Physical Therapy Affect Social Skills?

· Enabled Kids Written by the therapists at Health in Motion Rehabilitation in Toronto, Canada, this site is a wealth of information for parents. Their blog, written for parents, generally covers therapy topics for children with cerebral palsy, spinal cord and traumatic brain injury. Recent post: What Are The Risks Of Giving My Child A G-tube?

· PediatricOT Loren Shlaes is a school-based occupational therapist in NYC. She writes excellent, hard-hitting, spot-on articles about teaching and parenting kiddos, “from the trenches.” Topics are primarily behavioral and sensory issues, and handwriting. Recent post: 24 Reasons Why A Child Can't Sit Still.

· Starfish Therapies Stacy Menz, DPT, is a board-certified pediatric clinical specialist with an excellent blog. Active in research, Stacy and her team have excellent insight into strengthening and gross motor activities and also give great toy recommendations. They named their company after The Starthrower, that wonderful story about the boy who throws starfish back into the sea because he could make a difference in the world—one starfish at a time. Recent post: How To Make Therapy Fun—Ways To Move Past The "No!"

·Therapy Fun Zone. This colorful, easy-to-navigate site/blog is full of great OT activities and crafts; it's a great read for parents who have children with fine motor, gross motor and sensorimotor needs. Recent post: Connecta Straws For Fine-Motor and Visual Perception.

· Your Therapy Source's YouTube channel The Your Therapy Source site has a great collection of free activities and hand-outs and a terrific YouTube Channel full of video ideas for fine motor, gross motor and handwriting practice. Recent video: Pump It Up—Muscle Strengthening Shoulders And Arms.

Great Blogs for Speech-Language Therapy Ideas and Communication/Social Skills

· Child Talk Becca Jarzynski writes a wonderful speech and language therapy blog that should not be missed. Her articles, like this one on grocery shopping with toddlers, offer concrete ideas for parents to help their child communicate during “everyday life.” Recent post: Top 10 Tips For Late Talkers.

· Play on Words This blog is quite unique in that it focuses on toys, games and books that facilitate language development. Not only does Sherry Artemko write excellent book and product reviews, she offers up specific ways parents can sneak speech and language therapy practice into family fun time at home. Recent post: E-Books vs. Print Books For Children.

· Speech Room News Young and full of energy, Jenna Rayburn is one of the most creative therapists blogging in therapy circles. Several times a week, she posts a fresh, fun activity to promote speech and language goals. Speech Room News was just awarded First Runner-Up among new blogs in the Edublog 2011 awards. PediaStaff is proud to have made the initial nomination of SRN for this award. Recent post: iPad Ideas.

And 1 Great Blog For Special Needs Apps

TherapyApp 411 This new group blog, also an Edublog nominee, is a collaborative effort of several of my favorite therapy bloggers. The aim is to review smartphone and tablet apps that can be used through a therapy lens. So far the reviews have mostly been of speech-language and social skills apps, but just this week PediaStaff has recommended to them three physical therapists who will be writing software reviews of apps for children with special physical and adaptive needs. Recent post: Practicing Life Skills With Apps: The Shopping Cart Game.

Our rotation of PediaStaff guest bloggers features over 20 different therapy oriented blogs, so if you are hungry to read additional therapy blogs, please stop by. We also follow about 40 additional teacher blogs, and over 8000 teachers and therapist boards on our special needs Pinterest board.

My son is now 20. Because of my work in the special needs field, we now know that he is on the edge of the autism spectrum and is at least Aspergers-ish. He still has never been for OT but we’ve talked about it and he now knows that it is an option for him. Almost every day I read something on the Internet that resonates with our struggle to raise him. Oh, how I wish I had some these resources fifteen years ago! But how exciting that this new generation of Web 2.0 special-needs parents need not feel as lonely as we were.

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