Love That Max

Do I know how to party or what?

noreply@blogger.com (Ellen) — Mon, 30 Jan 2012 11:45:00 +0000

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

Share your child's can-do creativity!

noreply@blogger.com (Ellen) — Fri, 27 Jan 2012 12:00:00 +0000

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!

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

noreply@blogger.com (Ellen) — Thu, 26 Jan 2012 11:40:00 +0000

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.

The chewed slice of cheese and other special needs scores

noreply@blogger.com (Ellen) — Wed, 25 Jan 2012 11:55:00 +0000

The highlight of my day yesterday was a chewed piece of American cheese.

Specifically: Max chewed a piece of American cheese. And it was awesome.

At night, after I get Max into bed and turn out the light, he inevitably says "eeese!" ["cheese!"] I can't decide if he's extra hungry lately because he's going through a growth spurt or he just wants to delay bedtime, but either way, I go downstairs and get him the cheese. The unnaturally orange kind that comes in squares, just like I had as a kid. Max likes his cheese orange, and his women purple. Or something like that.

I have a specific way of giving Max the cheese. First I divide it into thirds, then I'll fold each of those pieces in half to give him something more substantial to bite into and make chewing easier. I hold the pieces for him because cheese is flimsy and hard for Max to grasp. I'll place it on his back molars, let him bite, then slide more in. I always tuck a paper towel into his pajama top because inevitably, little pieces of cheese fall out of his mouth.

Max's challenges with eating took me by surprise when he was a baby. I knew we were in for serious developmental delays, but nobody had told me that Max would have trouble retaining food and drink in his mouth. Breastfeeding could take 45 minutes to an hour a pop; Max had issues with latching on and swallowing, issues we later found out were from the cerebral palsy. When he started taking a bottle, I'd soak through several burp cloths every feeding because so much dribbled out. Getting through a jar of baby food took forever; I'd spoon some into Max's mouth, most of it would dribble out, and I'd spoon it back in again.

Slowly but surely, Max's eating has improved. He's keeping a lot more food in his mouth these days, particularly foods that aren't too liquidy (he makes a glorious mess with chocolate ice-cream and milkshakes). Max still mostly eats soft foods; he's not proficient enough at chewing to have crunchy stuff, but hopefully that'll come soon enough. We practice with Cheez Doodles (when I'm not stealing them from him).

The bedtime American cheese snack is usually a bit of a mess. But last night, Max asked for his slice. I got it for him. I fed it to him. And he ate every single bit of it. There wasn't one orange speck on that paper towel.

S-C-O-R-E-!

It was a small thing, but it was a big thing.

It was not unexpected but it still seemed astonishing.

It was one more FU to the cerebral palsy.

It was the sustenance that feeds my hopes for Max.

What scores has your child had lately? Share, so we can all celebrate!

Photo/free-extras

You didn't have to say that

noreply@blogger.com (Ellen) — Tue, 24 Jan 2012 11:50:00 +0000

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.

Sibling rivalry is an excellent motivator

noreply@blogger.com (Ellen) — Mon, 23 Jan 2012 11:45:00 +0000

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!"

"Ine!"

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.

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

noreply@blogger.com (Ellen) — Sat, 21 Jan 2012 11:49:00 +0000

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!

Stuff Special Needs Moms Say

noreply@blogger.com (Ellen) — Thu, 19 Jan 2012 12:00:00 +0000

"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!"

"DON'T THROW THAT BREAD ROLL!"

"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."

Today was a good day for me

noreply@blogger.com (Ellen) — Wed, 18 Jan 2012 11:45:00 +0000

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?

Balancing therapy, life and fun for our kids

noreply@blogger.com (Ellen) — Tue, 17 Jan 2012 11:45:00 +0000

"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.

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

noreply@blogger.com (Ellen) — Sun, 15 Jan 2012 20:15:00 +0000

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."

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

noreply@blogger.com (Ellen) — Sat, 14 Jan 2012 01:05:00 +0000

This is Amelia. She is 2 years old, almost 3. Her mom, Chrissy, 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.

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 change.org 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.

Love That Max Rerun: Spaghetti As A Fashion Statement

noreply@blogger.com (Ellen) — Fri, 13 Jan 2012 11:45:00 +0000

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

Our kids' secret strength

noreply@blogger.com (Ellen) — Thu, 12 Jan 2012 11:50:00 +0000

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.

Great sites for therapy ideas for kids with special needs

noreply@blogger.com (Ellen) — Wed, 11 Jan 2012 11:30:00 +0000

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.

Max and Sabrina have got talent

noreply@blogger.com (Ellen) — Tue, 10 Jan 2012 11:50:00 +0000

There's been lots of dancing at our house lately, which is a wonderful thing because the kids look so cute, it's amazing to see Max rock out and also, it's hard to whine and dance. Max gets glued to the scenes from Cars 2 on his iPad here, but you can still get a sense of his dance techniques. And, yep, I do think Simon Cowell would be impressed.

And now, here's Sabrina demonstrating what she's been learning in hip-hop class. She has moves that I am quite sure I will never master in this lifetime. (That laugh at the start is mine, after Dave whispered "I hope she doesn't want to set up a pole in the living room.") Caution: You may get tired just watching this video.

Helping kids with special needs make friends

noreply@blogger.com (Ellen) — Mon, 09 Jan 2012 11:55:00 +0000

It's late afternoon on a ridiculously warm winter day, and Max is riding his beloved green tractor around our neighborhood. We pass by the front yard with the gigantic trampoline; two kids are bouncing on it. Max has never paid much attention to it before but today, he stops and stares.

"You want to go see the trampoline?" I ask.

"Eeee-yah!" says Max ["YEAH!"].

So he gets off his tractor and we walk over to the trampoline. There's a 12-year-old there who knows Max and a 7-year-old who doesn't.

"Hi!" says Max.

The kids say hi. I ask if it's OK if Max joins them, and when they agree I lift him onto it and hold his hand. Max's balance is excellent on solid ground but he's unsteady on trampolines; jumping isn't yet in his repertoire of movements.

"Max, tell them your name," I say.

"Ax!" says Max.

The younger kid eyes Max warily. "Doesn't he know how to talk?" he asks me.

"Max is talking—he does it in his own way," I say, evenly.

"How old is he?" the kid asks.

"Ask him," I say. "He's right here, he can hear you, and he'd love to talk with you."

"How old are you?" the kid asks Max.

"Eine!" says Max.

"He's nine?" the kids says, dubiously. "He doesn't look nine!"

"Max, you're nine, right?" I ask.

"Eee-yah!" Max says, nodding.

"Some kids don't always look their age," I tell the kid. "You look older than 7!"

"Right," says the older boy. "You do."

"Why does he have stuff coming out of his mouth?" the kid asks. "Why is his mouth always open?"

Max can't answer this one, even if his iPad and speech app were around, so I do.

"It's just the way his mouth is, and because it's open a lot, drool can come out," I say.

I pause. "Hey, Max, tell them what your favorite movie is!" I say.

"Arrrs Oooh!" ["Cars 2!"] he answers.

"I love that movie!" says the older kid.

As the kids bounce silently and Max rides their vibrations, my mind is whirling. I still get unnerved by kids who talk about Max as if he isn't there, and how kids can be taken aback by meeting Max, who happens to be among the more uber-friendly children of the world.

It used to make my heart ache. By this point in Max's life, though, I know that kids are mostly just curious. The younger ones have no filters; they say what they think. But when they're wary, I have to try to move them past their discomfort. I've learned to answer their questions straight up, and to keep roping Max into the discussion. It's a balance of helping them understand why he's different than they are—but also helping them see what's alike, too.

The older kid flops down on his butt then rebounds to his feet. Max and I both crack up.

"Max, if you want him to do it again say 'Again, please!'" I tell him.

Max says something like that, the boy repeats the move, Max giggles and both kids smile.

Max's laugh is the great equalizer—no matter who you are, it's hard to resist. When Max laughs, kids start to see his personality, not his disability. And once you get a laugh out of Max, you want more. The FDA has not yet labeled it an addictive substance, but someday they just might.

Now the little kid falls on his butt and jumps up, looking at Max. "You like that?" he asks.

"Eeee-yah!" Max says, happily.

And then the kids are bouncing up a storm and Max is laughing and we are all there in the twilight, enjoying each other's company and a spring-like winter's day.

What it takes to inspire yourself to lose the weight

noreply@blogger.com (Ellen) — Fri, 06 Jan 2012 12:50:00 +0000

When you're invited to a National Weigh-In Day, dedicated to inspiring people to shed or maintain their weight, and your first thought is "Wonder if they'll be serving food?" this is a sure sign that you need to confront your weight issues.

I've still got the pounds I put on when I had my kids; Max is 9, Sabrina is turning 7 next month. I am a master of procrastination: I'll start eating healthier and exercising more on Monday. Or Friday. Or when I finish this big project. Or after that big party. Or when it gets a little warmer. Or colder. Or when it's a lunar eclipse! Really, any excuse will do.

The Special K people, who sponsored the event and this post, want to help women focus on what will motivate them to take off pounds. I love the question they're asking: "What will you gain when you lose weight?" They're offering personalized plans to get people to reach their weight goals. While none of the plans involve machines that exercise you as you sleep, alas, they do involve eating the cereal, a childhood favorite of mine, and lots of fruit and veggies. There's also a My Special K app to help you shop and plan menus.

At the event, I stepped up to the "Weigh-In." Mercifully, my weight did not pop up on a screen in the middle of Grand Central Station (dying of embarrassment is not a recommended way to solve your weight problem). Instead, a motivating word appeared: energy. Thing is, I already have plenty of that, though I sure wish someone would buy me a speedier metabolism.

One helpful way to appear slimmer: blurry photos.

The top three emotional reasons women want to lose weight are happiness, confidence, and a sense of achievement, according to a Special K survey of women ages 25 to 54 around the country. Other inspirations: fitting into old clothes, healthier eating habits and living a more active lifestyle.

Nope, nope, nope. Nada. Negative. Nyet. None of those are major motivations for me. All week, I kept pondering what might spur me to shed pounds. Then last night, as I was reading Max a bedtime story, I absentmindedly ran my finger over his foot and he giggled. "Mooooore!" he said. So I tickled his neck, and he cracked up. And then I reached under his Cars 2 pajama shirt and tickled his belly, and he made his joyous Max squeal that I can't describe except to say, nothing can be wrong in the world when I hear that sound.

As we lay there, both of us laughing, I realized my motivation has been staring me in the face all along: Max. I need to be at my healthiest so I'll be around to care for him for a long time. Sabrina too, of course. But Max is the one who's going to need me most.

The next time I reach for the chips at 11:00 p.m. or feel like skipping the gym, I am going to think back to our ticklefest. I want to hear that squeal of his for many years to come. Maybe I'll tape some photos of the kids to the inside of our pantry door; it would be hard to snarf down a Yodel with Max and Sabrina staring me in the face.

The first question you get when you choose the "Achieve a Goal Weight" plan at Special K is: "What positive change are you hoping for, besides slimming down?"

What I typed: "I want to be healthier so I'll be there for my son for as long as is humanly possible."

How about you: If you've had success losing weight, what's motivated you? Or if you've struggled to find your motivation, what do you think might help?

istock/webphotographeer

Raising kids with special needs: Sit back, relax and enjoy the ride

noreply@blogger.com (Ellen) — Thu, 05 Jan 2012 11:52:00 +0000

Among the many glorious sites we enjoyed during our visit to Park City, Utah:

Park City, Utah's free transit system; above, Max on a bus.

The St. Regis funicular, a posh tram with leather seating that takes you up to the hotel.

The lift to Canyons ski resort.

Deer Valley Resort's fleet of 30 Cadillac Escalades, used to transport guests. We all loved the automatic "assist steps" that popped out when you stepped in.

Not pictured: Deer Valley Resort's shuttles. Or the Range Rover we rode in when we visited the Montage hotel. Or the airport train we did a loop on before we went through the security line, even though we were already in the right terminal.

Yes, it's true: I spent part of my vacation riding around in various modes of transportation, and often we weren't headed anywhere in particular—Max just wanted to ride. The day we visited Canyons, riding the lift is pretty much all we did, outside of a hot chocolate stop. Another afternoon, Max and I made several loops on a Deer Valley shuttle.

And one afternoon, we repeatedly rode up and down the funicular. A couple who'd gotten off returned 20 minutes later to find Max and me still on it, looking like permanent fixtures.

Years ago, I would have resisted letting Max ride around aimlessly. Way to waste a good (and not cheap!) trip, I would have thought. How boring. I am not going to give in. Or maybe I would have given in and just sat there, feeling bummed that this is what my life had come to: riding around shuttles on vacation with a kid who only wanted to sit in the back seat and peer out the window at the passing scenery.

But that was then. Now we make this part of our vacation, and either Dave or I ride around with Max on the local forms of transportation (and around and around and around). I'll talk about stuff we pass by, check my email on my iPhone, relax. We do this within reason: If we're taking up seats on a crowded shuttle, we get off. Or if Max had, say, wanted to eat dinner in the funicular, I wouldn't have let him, because I'm a tough-ass that way. Although we did have a leetle snack.

Letting go of perceptions of the way things "should" be with Max, on vacation and otherwise, has taken me a long time. I so wanted him to enjoy life the way the rest of us did. But being on things that go is Max's idea of fun, more so than tubing or visiting a museum, and I've come to realize that.

Sometimes, I still impose my own ideas of happiness on Max and my spirits crash and burn when things don't pan out, which is what happened at his birthday party this year. But mostly, I've accepted Max's quirky sense of a good time. It's helped me stress less, let go of sadness and sit back, relax and enjoy the ride.

Adaptive skiing at the National Ability Center: score!

noreply@blogger.com (Ellen) — Wed, 04 Jan 2012 11:50:00 +0000

The main event of our Park City, Utah visit: Max got to do adaptive skiing via The National Ability Center. I only found out about the NAC a few months ago, and as I read through the website and its many offerings, I was floored... and wishing we had a center like that near us.

The NAC offers sports programs and outdoor activities for people of all ages and all abilities, 17 different programs in all. It's based at the Bronfman Family Recreation Center & Ranch on 26 acres of donated land. Gotta love the address: 1000 Ability Way. The activities are year round: adaptive alpine and cross-counry skiing, snowboarding, aquatics, archery, cycling, equestrian programs, sled hockey and water skiing. There's also an Alpine Ski Team—which snagged 11 medals at this year's U.S. Disabled Nationals in Idaho—and a hockey team. And rafting and camping trips. And summer camps.

Suddenly, New York seemed like such a boring place to live.

On this trip, we were all about adaptive skiing. Max has tried it several times; the last time he liked it but bailed the minute he saw Dave, and didn't want to go back. I didn't know what to expect, and I had extreme meltdown dread, but I wanted Max to give it a go again. Sports help build confidence in any kids, but for kids with physical challenges, I think they can be extra ego-boosting. Also, I figured that if anyplace could coax Max into skiing, a place called the National Ability Center could.

Before our trip, I sent in a participant packet. It included questions about physical and sensory concerns, behavioral tendencies, level of cognition and processing, medical info, favorite activities, fears/dislikes and Family Dos and Dont's. I will not bore you with the details except to say that I repeatedly mentioned Lightning McQueen, Cars 2 and purple. I requested a guy for an instructor; I thought a dude would inspire him. Though I did not write "dude."

There are a variety of lesson options; we booked three afternoon lessons for Max, from 1 to 4, at $100 each (if you know the cost of ski lessons, you know that is a real bargain). The first one was at Park City Mountain Resort and the other two, at Deer Valley Resort's Snow Lodge

Let's start with the happy fact that Max did not wig out when we walked into the NAC's ski center at Park City Mountain Resort. We'd already gotten ski and boot rentals at Deer Valley Resort. The instructor, Kevin, met us in the ski shop, and Max gave him a big smile hello. In his second season with the NAC, Kevin was like the Pied Piper on skis. He helped put on Max's boots, and charmed him by showing him a purple rope thingie he'd use to guide him (note, not its official name).

After we headed outside, Kevin explained about putting on skis and helped Max into them. Kevin was a middle school science teacher for three years, and he has a highly evolved level of patience. Next he gave Max a big rubber wheel and told him to steer it right for going right, and left for going left—which would help him automatically move his skis in those directions. And then? He told Max that he was Lightning McQueen in a race.

Look! A blissed-out, skiing Lightning McQueen!

Kevin put clips on the front of Max's skis to help keep them parallel.

A little pep talk

Riding the magic carpet. This part was a bit tricky for Max; he fell a couple of times and once, he dropped straight backward—you know, like people do in trust falls. Kevin was right behind him, of course. Max thought this was really funny, even though I almost had a heart attack.

Kevin guided Max downhill with the purple rope thingie.

Soon enough, Max was pointing to the lift and telling us he wanted to go on it. "Not yet," said Kevin. The two of them hung out alone for Max's second and third lessons and Max did get to go on a lift, daredevil that he is.

Skiing is generally an exhilarating sport: there's that feeling of lightness and freedom you experience when you zoom downhill, that head rush of speed. But let me tell you, nothing compares to the exhilaration of seeing your child with cerebral palsy skiing. "MAX!!! YOU'RE SKIING!!!" I must have shouted a dozen times. Gleeful, I was.

A couple days later, I headed to the NAC campus with my pal Bari Nan—my pilgrimage to a special needs mecca. (OK, really, it was about 10 minutes away from where we were staying.)

Our tour guide: Allie, a super-friendly staffer who's worked there for five years.

The tree in the lobby

The indoor climbing wall, a popular activity for birthday parties.

The accessible playground (not so popular in winter)

The commons area in the Lodge at the Ranch, on the NAC grounds. It's a glorious 20,000 square feet, with 26 fully-accessible guest rooms open to NAC participants and their families. There's a big kitchen/dining room area, too.

Back view of the lodge

The heated, 17,000-square-foot equestrian arena and barn. The NAC offers three forms of equine-assisted therapies and activities: therapeutic riding, hippoterhapy, and equine- facilitated learning. Lessons take place six days a week, year round, and are typically lead by occupational therapists.

My new friend Sarah, who has a two-year-old with cerebral palsy, recently started bringing him here for hippotherapy. At first, Charlie was scared. Max also used to do therapeutic riding at his age, and we'd been through the same thing. But like Max, the horse soon won Charlie over, as you can see. Go, Charlie!

"I feel so fortunate to have the National Ability Center in our 'backyard,'" says Sarah. "From the moment I met the therapists, handlers and staff, I knew I could trust them implicitly with Charlie's care. I look forward to sharing my passion for the outdoors with Charlie with the continued assistance and resources of this renowned facility."

Last year, the National Ability Center gave some 20,000 lessons.

Rock on, NAC.

Rock on, Max, and all kids with special powers who show the world that, yes, they can participate in sports—and enjoy them just as much as any kids out there.

Max came home with a new word: "iiing!" ["skiing!"]. And he'd really like to go again.

Any of you live near centers like this? Have your kids tried adaptive sports?

A visit to Park City, Utah—family friendly, fun and moose-tastic

noreply@blogger.com (Ellen) — Tue, 03 Jan 2012 11:50:00 +0000

Our trip to Park City, Utah, last week was one of the best family trips we've ever taken. It's also a particularly great place to visit if you have a child with special needs. All of us skied, played, and ate ourselves silly. Which is to say, we are all very happy plump people. The scenery is gorgeous; one local I met says that every day, on her drive to work past the mountain range, she reminds herself to take a look. The air is so clean, my lungs were confused.

Where to stay in Park City, Utah

Deer Valley Resort

We stayed at The Silver Baron Lodge in Deer Valley, part of Deer Valley Resort along with the Lodges at Deer Valley. The resort is 45 minutes away from Salt Lake City International Airport. Both lodges are a one-minute ride from Snow Lodge, where we skied. We didn't rent a car; free shuttles are on hand to transport guests around the area, as are the free city buses. Otherwise, there are plenty of taxis; we used Ace Transportation and occasionally hopped on the random moose who ambled by. OK, we didn't. But we all couldn't wait to spot our first moose.

We stayed in room 6101, on the first floor, a spacious one bedroom with two fireplaces, a kitchen and a whirlpool tub that fits a family of four if you squish in (just in case you're wondering). The lovely lodge manager, Mary Ann, took good care to make sure we had a great stay. The Silver Baron had an included continental breakfast every morning, and the kids loved making waffles (with chocolate syrup). There was also hot chocolate, cider and cookies served every afternoon in the lobby. And, yes, the kids were on a sugar high for most of their time there.

Max loved this chair so much he wanted to bring it home, but we explained that we didn't think it would count as a carry-on baggage. We let him watch Cars 2 every single night as we fed him chocolate ice-cream, his idea of heaven.

On a wall at The Silver Baron Lodge. "Wow, look at those tennis racquets!" said Sabrina, and I explained they were old snowshoes. "You mean they didn't have Uggs?" she asked.

The hot tub in the back of Silver Baron. There was also a nice size heated swimming pool. Because it's dry there, the cold never felt as cold as it does back home in the Northeast.

The Deer Valley Children's Center is a state-licensed facility for kids ages two months to 12 years old. Max referred to it as "ski school" and couldn't wait to be there. I'd let them know about his needs ahead of time, and they couldn't have been more accomodating. The staff was amazingly warm, attentive and just plain fun. Max spent several mornings there and had a blast making crafts, riding various bikes around and playing with kids. There was a girl his age there who had special needs, and the two became fast friends.

The Lodges at Deer Valley. And, yes, I wish I were there too.

Other excellent hotels in Park City, Utah

There are numerous hotel and condo offerings in the area. We checked out two other great resorts: the Montage Deer Valley and Stein Eriksen Lodge, where I had a Scott Wolf sighting. That's a good thing because if it were George Clooney, I might have embarrassed myself.

At the Stein Eriksen, named after the 1952 Olympic Giant Slalom gold medalist. The hotel ranks among the top mountain resorts in the world, and is Utah's only Forbes five-star hotel.

The yummy-smelling gingerbread house at Stein Eriksen was larger than some apartments I've seen in New York City.

The Montage Deer Valley, just a year old, is an acclaimed hot spot. It recently scored Best Family Program by Virtuoso, clearly evident in the children's program, the in-house bowling alley, the stuffed animals little guests get at check in (mini moose, anyone?), and Jonas and Monty, the resident Bernese Mountain Dogs who hold court in the lobby for kids to pet.

Indoor pool at the Montage; there's a large outdoor heated one, too. The spa is the largest one in Utah.

Sabrina at the Paintbox children's club. There's a different theme every day, with indoor and outdoor play. The kids got to enjoy Weird Science Wednesday, which included making snow volcanos out of Mentos and Coke. Sabrina hopes to recreate the effect in our bathtub.

Park City, Utah is home to the National Ability Center, a unique non-profit that offers numerous outdoor activities and sports programs to people with disabilities year round. The Lodge on the property has 26 fully accessible rooms, each with a private bath, and you're welcome to stay there is someone in your family is participating in NAC activities.

Rooms are booked on a first come, first served basis. At $70 a night during winter months, they're a sweet deal.

Stuff to do in Park City, Utah

Ski, ski, ski!

Sabrina and I both took lessons at Snow Park Lodge at Deer Valley Resort, ranked the #1 ski resort in North America by SKI magazine for five years in a row. Bonus: You can book lift tickets, ski rentals, child care and ski lessons in one call to Skier Services (888-754-8477).

We got our ski rentals there, and staffers in the shop were exceptionally friendly. The boot guy listened patiently as I told him about partially tearing my left ACL two years ago, then looked me in the eye and said "Time to get back in the saddle!" And off I went, skiing. Miraculously, my knee didn't give me any trouble.

Although so far the snow has been unusually light this year, it's still far fluffier than any kind I've fallen in before. Snowboarders aren't allowed at Deer Valley Resort (not that there's anything wrong with snowboarders) and they also limit the number of tickets sold, so it's never too crowded. There are 100 trails (that's 60 miles' worth), 27 percent of which are beginner ones. I followed in Sabrina's tracks and stayed on Success and Ontario, and also watched in awe as she flew down the mountain, pole-less. Loved the Wide West Race Course for little kids and weenie adults like me; check it out on this Deer Valley Blog post written by my friend Bari Nan, a pal from the days when we worked at YM Magazine.

Sabrina quickly progressed to Advanced Beginner, and I moved up to Intermediate Non-Klutz, the best I can say for me. I learned better control thanks to two lessons with the most amazing ski instructor, Peter Badewitz, a seasoned pro who cofounded The National Ability Center 26 years ago. I found out only after our lessons that he is is a former US Disabled Ski Team Member (a war vet, he has an amputated leg). "Everyone has a disability when they ski," he told me, which is so true, or at least made me feel less ridiculous for being so uncoordinated. Three control techniques we focused on: 1) finishing the turn 2) flexion and extension (dropping down as you turn, then straightening up) and 3) skidding. I still freak out a bit when my skis are pointed downhill on a slope, but I've gotten far better at stopping, which is kind of key. I think my hopes for becoming an Olympic champ depend on whether or not they institute a Speed Typing event.

Max was pretty bold, too. Here he is making like Bode Miller at Park City Mountain Resort, where the National Ability Center's adaptive ski program is based. Max had his first lesson there, then two more at Deer Valley Resort. And, holy wow, did he love it. More about Max's skiing and the NAC tomorrow.

One day Dave hit the Deer Valley slopes from the Montage ski shop; it's ski-in, ski-out, with three lifts outside the door. He thought the equipment was top-notch, and loved the ski valets who help skiers get on equipment (a super-helpful thing for families)—and the warmed boots. That's the 2002 U.S. Olympic team bobsled in the photo.

Utah Olympic Park

Salt Lake City was host to the 2002 Winter Olympics, but several ski events were held at this site in Park City. Today, it's a year-round training, competition and recreation venue. You can get on a bobsled ride with a professional driver, or try intro camps in ski jumping, luge, and snowboarding.

The 2002 Olympic bobsled and luge track. There's a staff of 10 people spritzing it with water, shaving the ice and generally keeping it up.

Hanging in the museum. I sort of look like I was born in a luge, right? I learned lots of interesting stuff there, including the reason for the area's super-fluffy snow: the lake effect. When clouds coming from the Sierra Nevada Mountains hit Utah's Wasatch Range, they pick up warmer vapor, which freezes up and comes down as super-fluffy power. I also learned about how the area sets off avalanches as a control (I have a morbid fascination with avalanches).

I particularly loved seeing these medals from the 2002 Winter Paralympics.

This is what it looks like to stand at the top of a 64 meter ski jump. One word: eeep.

And this is what it looks like when a moose decides to amble across your path as you are exploring Olympic Park. The moose tried to climb its way up the 64 meter jump, but didn't succeed. Still, he looked like he'd be a better skier than me.

Tubing and snowmobiling at Gorgoza Park

Located several miles away from Park City's center, this activity park is full of downhill thrills. There are seven tubing lanes and three lifts, plus a Fort Frosty area with a mini conveyor and a tubing carousel. "No skill needed," the website proclaims. Amen!

Max was dubious about tubing. In fact, he wailed the entire way down. Not his thang. The rest of us had a blast.

Max was more into the mini snowmobiles for kids ages 5 to 12. The controls were a little hard for him to handle but he really liked sitting on one and watching kids whiz by.

The Park City Museum

Centrally located on Main Street, the museum is full of Park City history and interactive stations. Max was into the old fire truck, even though it had nothing to do with Lightning McQueen.

Sabrina in a recreated Smith & Brim Grocery.

Sabrina particularly enjoyed the original territorial jail in the basement. I told her she'd end up there if she didn't quit having tantrums. (OK, I didn't really say that but I wanted to.)

Little visitors to the museum can also "connect" calls at the switchboard, detonate "dynamite," check out the two-story replica of the 19th century Mega Mine mill (Park City was once a major silver mining center) and climb into the world's only Skier Subway, a mining tram transformed into an underground ski lift in the sixties. But water dripped all over the place, and riders froze up the second they hit air. Fail!

Once you're done with the museum, you can amble up and down historic Main Street and explore shops, galleries and restaurants. Unless you're Max, in which case you only want to sit in Main Street Pizza and Noodle and eat pasta. Many of the buildings date back to The Great Fire of 1898, which destroyed more than 200 homes and businesses.

And if you just want to veg out...

I spent an entire afternoon on a comfy sofa in front of the fireplace in the Montage's Vista Lounge. You can order cocoa from a server, read and (gasp!) even doze off without anyone shouting "MOMMMMY WHERE ARE MY SKI SOCKS?" or "ARRS OOO!!!" ["CARS 2!!!"]

Delicious places to eat in Park City, Utah

It would probably be easier to list where not to eat, because every restaurant we visited was outstanding. Mostly, we dined at Deer Valley Resort because if was convenient and had some of the best eateries in the area.

Fireside Dining at Empire Canyon Lodge

A dining experience unlike anything I've ever tried, the restaurant has expansive rooms and five stone fireplaces, with cooks preparing different foods—a la European Alps dining. It's a beautiful setting, dimly lit with flickering fireplaces and heavenly smells. Before or after, you can take a horse-drawn sleigh ride or a snowshoe trek. Sabrina and I did a twilight sleigh ride, cuddled beneath blankets.

With Fireside Dining, you fireplace-hop to get your fill. I melted over the warm Swiss raclette cheese, dished onto a plate and downed with small, round slices of homemade bread. A table with accompaniments included delicious homemade mustards, marinated baby pearl onions and cornichons.

Stations featured various stews, potato rosti, roasted leg of lamb, prime rib and several vegetarian offerings.

Max checks out the dessert fondue—chocolate, caramel and white chocolate Grand Marnier. A lavish spread of dippers included fruit (fresh and dried), cookies and cake. There's also a super-rich Bavarian chocolate pudding cake...if you have room.

J&G Grill at the St. Regis Deer Valley

We got a babysitter for our dinner at this elegant restaurant with absolutely exquisite food, which some consider the best in the area. To get there you take a funicular—a tram that rides up a major hill, which makes the evening even more memorable.

The restaurant has a select offering of favorites from acclaimed chef Jean-Georges, made with local produce, meat and fish.

We had the Sliced Hamachi appetizer, a farmed version of yellowtail in a soy-ginger dressing. Dave got the Black Pepper Octopus and Paisely Farm Pork Belly with apple cider and shallot confit and the man was licking his chops. Plus we sampled the black truffle pizza (OMG!). I got to chatting with the manager there, Scott, who insisted I try the Soy Miso Mustard sauce you can choose for your steak or seafood. Twist my arm! Tangy, with lemon and lime juice and soy sauce, you could eat this stuff on cardboard, I'm telling you. And now, I've got the recipe. For the main course, Dave went with the 14 oz. Snake River Wagyu Strip steak and I had the Slow Cooked Scottish Salmon with truffle dressing and mashed potatoes. And I am so sorry if I'm making you extremely hungry.

I happen to have two stomachs: My regular stomach, and my dessert stomach, and so I always have room for sweets. Our server recommended the Salted Caramel Sundae. I was a little dubious—a sundae at a fancy restaurant?—but it was scrumptious, caramel ice-cream served over roasted peanuts and candied popcorn. I wanted to take one home!

Skier's Buffet at Stein Eriksen Lodge

After you work up an appetite skiing, this elaborate lunch buffet at the Giltretind is a wonderful place to lunch. Stein Eriksen, the director of skiing at Deer Valley Resort, regularly has lunch in the bar area.

Among the offerings at the first spread: soups, chili, several kinds of salads, seafood (including crab legs and shrimp), and a major cheese selection. Then there's the hot food spread, which can include everything from duck breast to Mahi Mahi to Yukon Gold mashed potatoes, plus prime rib at a carving station.

I was a sucker for the risotto station, where you could have yours made to order with veggies, chicken and other ingredients.

David here is a chef doing his internship for the Culinary Institute of America, and he makes a mean mushroom-red-pepper risotto.

Hello, dessert bar! The carrot cake had my name all over it. So did the coconut cake and, oddly enough, so did the chocolate cupcakes and the cobbler and....

The Mariposa

Located at Silver Lake Lodge, this restaurant ranks #1 for food in Zagat's Park City, Utah, listings. The menu is New American, and the setting cozy ski chalet. You can do a tastings menu—there's a regular one and a vegetarian option—or order a la carte. Portions are large; come hungry!

We started with the Ahi Sashimi with rice crackers, the delectable Warm Vidalia Onion and Gruyere tart. and Fried Green Tomatoes with melted chèvre and crispy shallots. Bari Nan had recommended the Burrata, Fresh Basil and Heirloom Cherry Tomato Salad. It's a ball of cheese goodness that's smooth on the outside and creamy-stringy inside.

A mixed plate for the main course: Niman Ranch Prime Beef Tenderloin Filet, Bear Lake Lamb Loin and Veal Tenderloin Medallion. Dave went for Seared Natural Bison Filets topped with foie gras. Neither of us could stop saying "mmmm."

The restaurant's signature dessert: The snowball, a decadent dark chocolate confection topped with creme fraiche.

Deer Valley Grocery-Cafe

A place for a low-key meal with surprisingly gourmet cuisine, in Deer Valley Plaza. It offers soups, stews, salads, paninis, homemade breads and take-out entrees. Dave loved the resort's signature turkey chili, I had an amazing Asian salad with house-smoked salmon and sesame ginger vinaigrette, and we both enjoyed the Charcuterie Plate with a mix of cheeses, salami and pickled treats.

Daly's Pub & Rec

Located at the Montage, this is a casual spot all four of us enjoyed. Max can't stand crowds, so we went at 4:00 one day and practically had the place to ourselves.

First, we hit Daly's Pub & Rec bowling alley. Max went gaga for a purple bowling bowl; he insisted on keeping it on our table as a centerpiece during dinner.

The pub has brick-oven pizza, sandwiches, salads, posh pub fare like Montage Mountain Ale Battered Fish and Chips and kid favorites like Cheddar Mac 'n Cheese. Dave and I had a relaxed meal as the kids played on the Wii and downed their meals. The pub also has billiards, darts, shuffleboard and a row of seven old-fashioned video games including Pac-Man and Donkey Kong.

We left Park City extremely well fed and happy. As is the custom, Max cried when the plane landed. Luckily, he did not ask to take a moose home.

Disclosure: I received some meals and services gratis, but the opinions expressed here are my own. So are the calories, alas.

The Love That Max Year In Review 2011 and a blog hop!

noreply@blogger.com (Ellen) — Mon, 02 Jan 2012 12:10:00 +0000

In January, Max learned to rhyme.

In February, he showed off some crazy dance moves.

In March, I said goodbye to my dad. I also tweeted at people who used the word "retard" and got all sorts of responses.

In April, I did not buy Max purple Crocs. In an unrelated incident, Max said "That stinks!"

In May, Max pointed out that he's not the one with problems, and I shared 20 More Reasons Moms of Kids With Special Needs Rocks.

In June, we had a great discussion on what moms of kids with special needs want other moms to know.

In July, Max aced his first time away at sleepaway camp, and I introduced the Mommy Is A Poopiehead speech program and The Spaghetti Manifesto.

In August, I shared ways to always have hope for your child.

In September, we revealed our special needs mom superpowers.

In October, I centered my life around Max—but I also tried not to. Then I disclosed the top special needs mom fantasies.

In November, I thanked Max for many things, confessed that I stole his Cheez Doodles and shared your reviews of the best toys for kids with special needs.

In December, Max made a knock-knock joke and rocked his school holiday concert.

What was memorable to you in 2011? Feel free to share links to one (or a few!) posts from your blog. In the first line, write the title of your post and in the second line, cut and paste the direct URL to the post.

Happy New Year, friends!

Support the Special Olympics by using coupons, a shoe club and other Stuff Worth Knowing About

noreply@blogger.com (Ellen) — Sat, 31 Dec 2011 13:33:00 +0000

Support the Special Olympics (and save $$$): You know that P&G brandSAVER coupon booklet you find in your newspaper every weekend? Tomorrow, Sunday, there's a Special Olympics edition. In honor of Special Olympics moms, P&G will make a donation to the Special Olympics for every BrandSAVER coupon redeemed. Oh, and for every new fan for P&G's Thank You, Mom Facebook page, P&G will donate one dollar to the Special Olympics—up to $100,000. Nice!

A shoe club! A shoe club! Sole Society is a new members-only club that sends you a pair of shoes—based on your style preferences—every month, for fees starting at $49.95. You get to pick your favorite heel, wedge, flat or bootie, styles available only through the society (you're free to defer months). I am a total flats girl; if I ever showed up in the booties at left, from the December collection, Dave would be all WHO ARE YOU AND WHAT HAVE YOU DONE WITH MY WIFE?! Perhaps I should surprise him. Although I received a pair of shoes at a Sole Society event and I chose... flats.

Worth seeing on the big screen: I tend to like movies about war; horses, eh. But War Horse is compelling on both fronts. I saw it in preview a few weeks ago through Moms and The City, and got sucked in. It's about a British boy—played by Jeremy Irvine—whose beloved horse gets sold off to soldiers at the start of World War 1. The film, which follows the two of them throughout many travails, is beautifully shot (hello, it's Steven Spielberg) and the war scenes, powerful. I'm a longtime fan of Emily Watson, who plays his mom. One particularly awesome line from the movie, spoken to her husband who has mentioned doing something unthinkable: "I may hate you more, but I'll never love you less." During the Q&A after the screening, Watson revealed there were actually 14 horses starring in the film (those horse unions are tough!) and shared tidbits about motherhood, like the fact that her kids—Juliet, 6 and Dylan, 2—don't watch TV, only DVDs, and the day her daughter projectile-vomited in business class on a plane. I asked who she found easier to work with: horses or actors. She smiled and said, "The horses."

Way to get kids to eat their veggies: Give them a choice, says food psychologist Brian Wansink, Ph.D., who's partnered with the Birds Eye people to get kids to down more of the green goodies. When kids were offered a choice of celery or carrots, they ate 18 percent more carrots than when carrots were the only option. Another good tip: give veggies funny names, like "x-ray vision carrots" or "broccoli bites." Create a virtual veggie plate on Birds Eye's Facebook page and they'll donate veggies for 10 meals to Share Our Strength, a nonprofit devoted to ending hunger among kids in this country.

Sign the petition: Earlier this month, a nine-year-old with autism in Mercer County, Kentucky, made headlines when his mom reported that his special ed aide had made him climb inside a gym bag for punishment to "control his autistic behavior." Now an 18-year-old college girl with autism, Lydia Brown, has created a petition on Change.org to end the abuse of students with autism in the area. You can sign the petition here.

Socially-responsible shopping: Deals site Treehouse Tykes sells high-end kid gear and clothes from brands including Le Petit Bateau, Nursery Works and Mod Mom Furniture at up to 70 percent off. Even better: Ten percent of each sale is donated to a charity or school of the buyer's choice.

Veggie face/Mirlande Jean-Gilles

This Is How I Do It: Katrina of Fickle Feline

noreply@blogger.com (Ellen) — Fri, 30 Dec 2011 12:00:00 +0000

This is the fifth guest post in the "This Is How I Do It" series, which features bloggers who have kids with special needs. They're explaining their tactics for special needs parenting, and other mysteries of the universe.

Blogger: Katrina Carefoot of Fickle Feline

Her kid: Max, 5, who has autism

My three biggest secrets to sanity are...

When I'm feeling overwhelmed, I do a mental check, asking myself if I'm hungry, angry, lonely or tired (HALT). If the answer is "yes" to any of them then I do my best to fix it, if not immediately, then as soon as possible. My husband and I also give each other time outs on the weekend so that we get breaks as needed. And, in a pinch, a glass of wine always works!

I keep track of my child’s therapy and medical appointments by…

I have a family calendar on the back of our front door. Before anyone leaves the house, they check the calendar to see what's on tap for the day. Max receives therapy seven days a week, so it is fairly static. The challenge is the rest of us!

One way I relax (actually really, really relax) is…

One of my best friends lives close by, and I like to go to her house for sleepovers. It's the only way that I can be truly off duty, and we get to chill out, catch up, and go out for breakfast the next morning.

When I get bummed out about something related to my child, one thing that gives me a lift is…

The truth about autism is that it is a constant two steps forward, one step back. It is important to keep perspective, which is why I chronicle Max's progress. On the hard days, I can look back and see how far he has come. I can also get helpful reminders, like the fact that his behaviour always goes sideways right before he gets sick. If it weren’t for my belief that everything will be okay, I am not sure I would be able to get through the day.

The way my husband and I split up responsibilities for caring for our child is...

I have changed my career, leaving my full-time position as a Marketing Manager so that I now work part-time from home and handle getting Max to and from school and therapy and all of the day to day consultations and meetings. My husband gets home quite late, and he puts Max to bed. On the weekends we split duties equally.

The way I deal if strangers stare at my kid or say things is…

I am always very kind and direct. I let them know that Max has autism, and that a year ago, he wasn't able to walk in a grocery store with me, or go to the bakery or the movies. I also give them a copy of my card and invite them to come read more about Max's progress and find out more about autism.

One great therapy technique I recently learned for my child from his therapist that I like doing with him is…

This isn't new, but it is an important thing to come back to. Max is a child who needs reinforcers. We are in the final steps of toilet training, and whenever progress stalls, we need to up the ante and find something more motivating to get him back on track. An example would be that when Max has a movement in the toilet, he used to get a marshmallow. We went through chocolate cookies, brownies, scones and more to keep him interested.

One great site I’ve found lots of good ideas on is...

The Happiness Project. I love this site because the challenge I face every day is not whether I am going to do what needs to be done, it's the manner in which I'm going to do it. I need reminders and aids on a daily basis to help keep my attitude positive and to give me perspective.

I rock because…

I'm Max's mom. He is the hardest working kid I've ever met and has taught me more in his five short years than I learned in the 31 years before I met him combined.

This Is How I Do It: Sunday of Extreme Parenthood

noreply@blogger.com (Ellen) — Thu, 29 Dec 2011 11:50:00 +0000

This is the fourth guest post in a series called "This Is How I Do It" that features stellar bloggers who have kids with special needs. They're giving the rest of us the scoop on how they keep it all together (and keep their sense of humor).

Blogger: Sunday Stilwell of Extreme Parenthood

Her kids: Sam, 8, and Noah, 6, who have autism

My three secrets to maintaining some semblance of sanity are...

First of all to remember that God has a plan for my my sons. At times I may feel like I can't see the forest through the trees but I know without a doubt that God can. On my toughest days I lean heavily on my faith and rest in God's promises. Secondly I try to always find a way to laugh about everything...the good and the bad. Life is way too serious on it's own to lower myself to it's level and get off track. And finally I'd be lying if I didn't tell you that some nights a couple glasses of red wine after the boys are asleep is just what this Mama needs to relax and unwind from the day.

One way I am able to relax (actually really, really relax) is...

Knowing that every other weekend the boys go to their dad's house. On those weekends my husband and I are able to reconnect as a couple, go out to dinner, and do the shopping and other errands we can't do with the boys. But my most favorite way to relax is to wrap up in a warm blanket and take a nap in the afternoon.

When I get bummed out about something related to the kids, one thing that gives me a lift is...

Venting my frustrations on Twitter. I know without a doubt that no matter how angry or sad I may be about a situation there are no less than a dozen other parents with special needs children who can empathize and relate to what I am feeling. The #autism and #specialneeds hashtags truly are my go-to support system.

If it weren’t for [fill in the blank], I am not sure I would be able to get through the day.

My husband, Mike. When I married for the second time I married for all the right reasons. I married a man who makes me go weak in the knees when he kisses me, at least once a day he makes me laugh so hard I snort my coffee, and most of all he loves my boys like they are his own. He and my younger son, Noah, have an especially close relationship and it warms my heart to see them play together.

The way my husband and I split up responsibilities for caring the boys is to just jump in when the other needs help. I am a stay at home mom and during the school year the boys are at school for 7 hours a day. During that time I recharge and do all the household duties while Mike is away at work. When Mike gets home he needs the time to unwind and decompress so I try to take care of the boys to give him that opportunity. After dinner we both do a bit of this and that to help each other out. If one of us feels stressed or overwhelmed the other is there to take over.

The way I deal if strangers stare at my boys or say something is...

To inform them that my boys have autism and that the behavior they are witnessing is normal for their diagnoses. However, I would be lying if there weren't times when someone has been especially ignorant and or rude that I haven't snapped, "My kids are autistic, what's your excuse?!"

One therapy technique I recently learned from my sons' occupational therapist is...

To buy a tabletop easel to help strengthen their arm and hand muscles. Both of my sons have very low muscle tone and therefore struggle with manipulating a writing utensil. Noah loves to write and color so a tabletop easel was right up his alley!

One great site I’ve found lots of good ideas on is...

Pinterest. Believe it or not Pinterest is not just for recipes, funny pictures, and do it yourself craft projects! One company in particular is Pedia Staff. Their Pinterest boards are full of therapy ideas, articles about special needs, and product recommendations. I especially like the PECS (picture exchange communication system) ideas.

I rock because...

Of my kids. Before I had my boys I was a doormat. I didn't know how to stand up for what I believed in and I just followed the crowd when it came time to make a decision. Today I am constantly pushing the envelope, fighting for what I believe in, and striving to make a difference for others. My boys gave me that power and that drive to never back down. I owe it to them to pay it forward.