Thursday, February 28, 2013

On proving your child's worth to the world

One of the most Sisyphean roles of parenting a kid with disabilities is helping people see their abilities. If your child has challenges with speech or physical disability, as Max and other kids with cerebral palsy do, it can be even more of an uphill battle as others may take their differences to mean they lack smarts and comprehension.

That's a running theme of Certain Proof: A Question of Worth, a powerful documentary directed by Ray Ellis and produced by Susan Ellis, his wife. The couple followed three mothers and their children with severe cerebral palsy for two and a half years, detailing their experiences in public school as they "proved" they were capable of learning, just like any other kid. The results are eye-opening, thought-provoking, moving and deeply disturbing.

The national television premiere is this Sunday, March 3 at 8:00 PM ET on STARZ Kids and Family Channel. Here's a trailer:

As you watch Josh, 6; Colin, 10; and Kayla, 12 in their classrooms, the challenges they face quickly become clear. "It's hard when people around us don't think he's in there," says Dawn Werner, Josh's mom. "The world assumes he can't learn, that's the danger. Why not assume he can understand everything?" The mothers are relatable on so many levels. You ache for them because you are them, that mom so hungry to enable her child and help him achieve his best.

It's distressing, too, to watch teachers and therapists trying but failing to engage the kids. ("Whenever I start at a new school, they look like a bomb hit them," notes Kayla.) You come to realize that the children are bored. They are not being mentally stimulated. They are frustrated.

Certain Proof raises major questions about the education of children with special needs, and makes the case for inclusionary classrooms for the sake of the kids and society, too. "Moving as many kids into regular education benefits the total population so much better," says Kayla's mom. "We have to find a way to promote them and make them as self-sufficient as possible." Notes Karen Erickson, an expert who studies children with disabilities, literacy and communication at University North Carolina, "If these children with severe disabilities are educated in a completely separate environment, they will never have opportunities in the community when they leave and they will have to have systems of separate service delivery for the rest of their lives."

Max's IEP is coming up next month. First, though, I am going to be sharing my copy of the DVD with our district coordinator, and again broaching the topic of placing Max in an inclusionary setting. But there are variables to consider with these decisions, which the film doesn't get into. For us, they include the quality of therapists and aides in our local schools (a couple of years ago, they fired the longtime aides and hired hourly-rate staffers of dubious quality). Also: We adore Max's school, and he's doing really well there.

Ray Ellis was gracious enough to offer four copies of the documentary to give away. If you'd like to enter to win one, you can privately submit your name and email via the form below. I will randomly choose four winners by 3/8 at midnight, announce them here and alert you by email. The DVD can be also purchased here for $19.95, plus shipping and handling.

I asked Ellis how making the film changed his perceptions of kids with disabilities. "I did not understand how trapped they were in their bodies," he says, "and that they are being held to a different set of standards and being asked to prove themselves over and over again. We almost named the film 'The Least Dangerous Assumption'—assume all children understand you and can learn. That is the only way not to limit their potential." 


The DVD winners, chosen via, are Tara D (#75), Elizabeth B (#18), Brandi H (#94) and Amanda L (#63).

Wednesday, February 27, 2013

And then, Max re-gifted me a present

"Honey! Max has something for you!" Dave shouted from downstairs.

I was in our room switching from work clothes into sweats. It had been a looong day, and I was zonked. But this sounded interesting.

Max was waiting for me at the bottom of stairs, one hand behind his back, a huge smile on his face. He handed me a cute little plastic purple creature.

"This is for me?" I said, incredulously.

"Eee-yah!" said Max, happily.

Sabrina zoomed over. "It's from the stuff he got at Valentine's Day at school!" she reported. Max had come home with a red construction paper heart stuffed with cards, candy and little treats that had sat on a table in the playroom ever since.

Max, it seems, was re-gifting. Maybe he picked that up from me, I can't be sure. (FYI: If you are a real-life friend of mine or related to me, rest assured, I have never re-gifted to you.)

But still: He was giving me something purple. He never parts with anything purple. So this meant that:

a) He loves me—he really, really loves me
b) He is maybe getting a little over purple
c) He is trying to butter me up in hopes of going on another Disney Cruise
d) All of the above

Tuesday, February 26, 2013

8 surprising FYIs about special needs planning

Financial planning for your child with special needs is one of those things you may not have time to deal with—but you know you should, for your child's financial future and yours, too. And so, Dave and I bit the bullet and have been tackling it for the past half year with the help of Massachusetts Mutual Life Insurance Company (MassMutual) and SpecialCare financial planners Sal Salvo and Michael MacDougal, in a series of sponsored posts. These are the surprising things we learned along the way, and some of the excellent nuggets of info we picked up:

First off: Planning takes time
Trust me, I know this isn't something you want to hear (as if you have all that free time on your hands!) but it's the reality. Dave and I have sat through multiple meetings with the planners, more than expected. While Sal and Michael were clear from the get-go about the planning steps involved (at the first meeting, ask how the rest will play out), at one point I was feeling a little meetinged-out and so I asked to condense two meetings into one, which we did. If you are feeling overwhelmed, or not sure about info you've received, it's important that you speak up.

It'll take yet more time to review the advice you get
What helped me and Dave was setting up biweekly dates at night to go over things. We scheduled a running Tuesday get-together on our calendars and stuck to it, more or less. Helpful hint: Breaking out a nice bottle of wine sure can help.

Investment reminder: a diversified portfolio is really, really key
Dave and I also learned about managing our assets, including the importance of having a diversified portfolio. It's always important to talk openly with the financial team about your risk tolerance and ultimate needs as you shape your strategy.

Insurance FYI: one policy tweak to make
One great (and non-costly!) recommendation we got was to increase the umbrella policy on our home insurance. As Michael said, "It's the cheapest liability coverage in the world, and often people don't have enough of it."

Also: Beware putting too much money into 529 plans
Like many parents, we immediately signed our kids up for 529 plans after they were born. I did one for Max because I was determined to have that hope for him; he would go to college, no matter what the doctors had told us about cognitive impairment. It was an emotional decision, rather than a logical one. We later decided to end the plan and instead invest in other options. That's because 529 money is limited to educational use only; funds cannot be used for other important things like, say, medical care. In other words, putting all our eggs into one 529 basket was not a good idea.  

You'll  have to deal with wills, too
In addition to your financial team, it's important to also work with a qualified estate planning attorney. After an examination of our wills (which had been set up before both kids were born), the estate attorney found some glaring problems. Issues ranged from language that could disqualify Max for government assistance to tax issues that could arise upon the death of first spouse. And that, my friends, is an excellent reason not to use a Rent-A-Lawyer type to set up the wills through your job's legal plan. We got specific guidance on what needs to be fixed, and we'll be having new wills drawn up by a lawyer who specializes in planning for kids with special needs (that is very, very KEY).

As with everything in life, it's good to do research of your own. 
There's a good chance a financial planner you will cover topics you know little about. When you look into the recommendations—assuming you go to reputable sites—you can further assess pros and cons, ask more informed questions, and make the best decisions for your family.

Get the scoop on Medicaid
Sal was particularly experienced with navigating Medicaid benefits for a child with special needs, because he has a daughter with Rett syndrome. What he told us was sobering: In our state alone, there are 8000 people with developmental disabilities on the waiting list for adequate housing. Gulp. Knowing the realities of Medicaid in your state can better help you plan for the future (and maybe strike the fear of God into you, too). (See above suggestion, re, bottle of wine.) For more info on benefits provided by Medicare or Medicaid (Medi-Cal in California), check out the Centers for Medicare & Medicaid Services. Medicaid guidelines vary by state; contact your local office for details.

Related posts:

Myths and realities about financial planning for kids with special needs

Trusts for kids with special needs: what to know, what to do

How your money personality affects planning for your child's future

This is the last in a series of posts sponsored by MassMutual, for which I received compensation. SpecialCare is an exclusive MassMutual program that provides access to information, specialists, and financial products and services. 

Monday, February 25, 2013

Serial casting returns, times two

Max got the serial casts on Friday. It took about an hour, and he was calm the entire time. (Thank you, DVD player and Cars movie.) I was so worried about how he'd get around with casts on both feet. He's a little wobbly, as you might expect when you're walking around with a couple of extra pounds glommed onto each leg, but it didn't stop him. Max was as happy and intrepid as ever. 

As it turns out, the so-called "shoes" are the real trouble. It took us about eleventy billion hours to get a pair of Dave's socks on over the casts, or maybe it was ten minutes, and then once we Velcroed the "shoes" on, Max couldn't get a lot of traction and walking wasn't as easy. We may have to send him to school with open toes, perhaps Max could set a new trend in footwear.

My friend Wendy says that someone could make a killing if they invented actual shoes that fit over the casts. Heads up, Prada!

Max is still deciding what he wants me to write on the casts—it's either going to be "Max loves Cars 2" or "Max loves mac 'n cheese with ketchup" or both. Tough decisions like this take time.  

I knew the casts didn't hurt but at bedtime last night, I asked anyway. "Nooooo," said Max. And then he gestured toward one foot, then pointed to the other and said "Nooooo." I knew exactly what he was saying. "You want to have a cast just on one foot, right?" I said. "Essss," he told me. And I hugged him tight and tried not to get upset and made myself think, This is good for him. This is good for him. But it was definitely one of those times when I hated the cerebral palsy.

Max wears two long blue plastic sleeves at bath time to keep water out. Thursday night, we have to take them both off; basically, you just unravel them. Sabrina actually did the job two years ago, the last time he had one, and we might ask her to do it again—assuming she still charges reasonable rates. 

Max is supposed to wear the casts for six weeks but there's a good chance the left one may come off a couple of weeks before the right one. His grand prize: a new night cast in purple.

Friday, February 22, 2013

Special Needs Blogger Weekend Link-Up: Your happy place

Welcome to another Special Needs Blogger Weekend Link-Up. So glad you came!

The idea

Share a favorite post of the week—yours or someone else's.

What to do

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

Like this: Love That Max: I'm Changing My Name To Lightning McQueen

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

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

Happy linking!

Thursday, February 21, 2013

Sweet potato love to help end world hunger

Today is Sweet Potato Day, dedicated to increasing awareness about world hunger. It's the brainchild of ONE, a movement that's all about fighting extreme poverty (yep, Bono co-founded it). I had to join in, given the cause and Max's devotion to sweet potatoes; that's my mom feeding Max, circa age 6.

It may seem like a humble potato, but it has the power to save lives. Every year, 3.5 million children die from poor nutrition. Right now, there are an estimated 25 million chronically malnourished children around the world. Investing in agriculture is one of the best ways to fight poverty and malnutrition—which is where the sweet potato comes in. Sweet potatoes are easy to grow. They pack a lot of Vitamin A, which promotes growth and development and healthy skin, eyes and immune responses. And they're tasty, too.

I was happy to give Max plenty of them when he was a baby, because he needed all the vitamin boosts he could get. At one check-up, the pediatrician questioned whether Max liked sweet potatoes. I asked how he could tell. "His skin has an orange tint," he noted. I was tempted to tell him it was self-tanner.

As it became clear that the cerebral palsy was causing issues with chewing, mashed sweet potatoes were a blessing, easy for Max to munch on. I'd drizzle in a teaspoon of Omega-3 oil (said to help with brain development), and mix in a load of butter to make sure he was getting enough calories.

To this day, sweet potatoes are one of Max's favorite foods. Last Thanksgiving, I decided I was going to make the most decadent sweet potato pie for him. I am not good at concocting my own recipes, but I excel at asking for suggestions—and I got a ton of great ones from Facebook friends.

I settled on this sweet potato pie from All Recipes. I can't tell you exactly why I went with it, it just seemed simply good. I made two. Max ate the better part of one. My family is still talking about the pie. My husband is sad that nobody remembered the turkey he cooked.

So consider the mighty sweet potato: A staple on our tables, yes, but also a spud that can sustain children's lives. Enjoy the recipes below from bloggers far more cook-tastic than I am. And please, take twenty seconds to sign this petition asking world leaders to make serious commitments to reducing chronic malnutrition for children around the world.

• Sweet Potato & Black Bean Burritos from This Week for Dinner
• Truffle Sweet Potato Frites from Savory Sweet Life
• Sweet Potato & Chicken Sausage Stew from Chefdruck
• Honey Sweet Potato Biscuits from Food for My Family
• Sweet Potato Burgers from Cutie Booty Cakes
• What's Gaby Cooking and Sweet Potato Day
• The Mission List and Sweet Potato Day
• World Moms Blog and Sweet Potato Day
• Go Graham Go and Sweet Potato Day
• Cranberry Sweet Potato Crumb Cake from Barbara Bakes
• Bourbon and Marshmallow Sweet Potatoes from Boston Mamas
• Documama and Sweet Potato Day
• Sweet Potato Bread Pudding from Eat the Love
• Lamb Shanks with Sweet Potatoes and Sausage from Kitchen Gadget Girl
• Celebrating Sweet Potato Day with Mom Trends
• Sweet Potato Chili from Righteous Bacon
• Cooking Sweet Potatoes for Picky Eaters from Rookie Moms
• Sweet Potatoes and Global Health from Third Eye Mom
• Indian Spiced Sweet Potato Kielbasa ONE Skillet Bake from Tickled Red
• Sweet, Dude, Sweet Potato Breakfast Hash from Helen Jane
• Oh My Sweet Potato Apple Bake from Bowl Licker
• Sweet Potato and Peanut Gratin from Non-Reactive Pan
• Sweet Potato Fries from When You Wake Up a Mother (also found on Million Moms Challenge)

Wednesday, February 20, 2013

Max aces ice shuffling, a new winter sport

Max has been getting gutsy about trying new things. Maybe it's the confidence that comes with getting older, or that he's getting more in control of his body. Whatever the reason, it's awesome.

Monday afternoon at Keystone Resort, the awesome family resort we recently visited, Sabrina and Dave had plans to go ice-skating. I was going to ride a ski gondola with Max (a favorite activity) except he decided he wanted to try skating. Our condo looked out onto a beautiful frozen lake; Max had been watching skaters twirl around for days.

Thing was, I knew he wouldn't be able to hold himself up on ice-skates. Not because I doubted his determination (that, I have no doubts about) but because I knew he'd have issues with balance. But into the ice-skating center we went.

Max immediately spotted a red walker used to train kids to skate and pointed to it. I looked at the guy behind the counter and explained that Max wouldn't be able to balance on skates. "He can just walk across the ice with the walker," Ice Man said, matter-of-factly. I asked if that was safe. He told me Max would be OK if he shuffled his feet instead of lifting them. Me, too, because I was going to be walking beside him. I'm not coordinated enough to skate and manage Max, although I probably could chew gum and skate if I tried.

I showed Max how to shuffle. I helped him walk down the stairs to the ice. I stepped on first, situated the walker, then guided him to it. Max had a helmet on, but I was scared he'd fall and hurt himself.

Max grabbed the walker and started shuffling, like he'd been doing it his entire life. He kept going for a good hour and did not fall once, righting himself the few times he slipped. He was downright gleeful. Which makes sense because he loves to push things that move, like carts and strollers. 

When we were done, Max wanted to take the walker home. I promised him we'd visit a rink near us. I've never seen them before but I'm betting I can either find a place that has them or buy one.

And then Max is going to be a champion and I am going to be his official coach! Look for it: ice shuffling, a new Winter Olympics event!

Tuesday, February 19, 2013

Adaptive skiing for kids with disabilities: Max hits the slopes!

We've spent the holiday weekend at Keystone Resort in Colorado, a great place for families—especially ones with kids who have special needs, because there is an awesome adaptive skiing program for kids of all abilities. It's run by the Breckenridge Outdoor Education Center, with 25 staff members and about 350 awesome volunteers. They enable everyone to ski, whether independently mobile or not, and have worked with kids with various needs—cerebral palsy, autism, Down syndrome, you name it. 

Max had three lessons, each with the same staffer (thank you, Chris!) and a volunteer. It took him awhile to get into it, but once he did, he was very happy—and very proud of himself. If you've skied, you know how good it feels to get into a groove. For Max, the thrill is extra-awesome because it gives him added confidence about moving his body. By the end of his lessons, he was able to turn his skis and independently walk with them on.  

Check him out! (The wobbly spots are my camera-holding challenges, not Max's.) Then come back tomorrow to see the new sport Max invented. 

Monday, February 18, 2013

Best headphones for kids and teens with autism and sensory issues

This is one of my most popular posts of all time, and I update it regularly.

This is a portrait Sabrina once drew of Max wearing his headphones. They've become as essential to Max's wardrobe as shirts and shoes. As in, he won't leave home without 'em.

I get emails asking what kind of headphones Max wears. They're the noise-reducing Howard Leight Leightning Folding Earmuff. They run $17, with a Noise Reduction Rating of 28 (the highest rating for earmuffs is 31). But they're kind of priceless because they've been an incredible help to him and our family, too. He's more comfortable venturing to new places like museums and restaurants, and less likely to melt down. Like other headphones on this page, they're adjustable. There's also this $10 version, which has a Noise Reduction Rating of 25. They don't completely block out noise (none of the ones listed here do).

We've never gotten the noise-blocking kind of headphones, as we want Max to be able to hear some sounds. But all of the noise-reducing ones here are pretty effective, and if you're flying, they can block out engine noise.

Snug Safe n Sound Kids Earmuffs come in a wide variety of colors; at $15, they're a good deal. (Noise reduction rating: 25). They fold up really small, plus they have a five-year guarantee. They seem to best fit kids under age 6. Lots of wins here!

I know a bunch of parents who like Baby Banz Hearing Protection Earmuffs for kids ages 2 to 10 ($26; Noise Reduction Rating: 21). They look cool and muffle loud noise without shutting out all other sounds. Also available for kids ages 0 to 2: Baby Banz Infant Hearing Protecting Earmuffs.

The Califone Hearing Safe Hearing Protector earmuffs for toddlers to tweens (noise reduction rating: 25) may be a bit cheaply made, but at a mere $8, you can keep them as a spare in the car should you (gasp!) leave the house without your child's usual trusty pair.

HearTek Kids Earmuffs Hearing Protection, which come with a travel bag, also get props from parents. Noise reduction rating: 27; cost: $15. They're comfy, and fit well—although a wee bit on the tight side.

We use the wireless BuddyPhones Play, $40, for listening to videos and music, which block out much of the background noise. They're among the best headphones for the job out there because they're developed with SafeAudio, so they have an always-on circuit that caps the volume at levels recommended for children by the World Health Organization. They also have more than 14 hours of battery life and they are seriously durable.

Another good pair of headphones for listening to videos and music: Skullcandy headphones, $22. 

The first headphones Max ever got were these 3M Peltor Junior Earmuff (Noise Reduction Rating: 25). They worked well but over time the wire got bent out of shape so we decided to try other ones. They're from a dependable brand, come in three colors and are good for juniors ages 13 and up and young adults (Max, however, was wearing them when he was around 9 and he has a small head)!

Max still gets wary at the sight of crowds, but the noise-blocking earmuffs are amazingly comforting. It's not just that they block noise; he's comforted by the slight pressure on his ears. In fact, they've given him so much confidence that sometimes he takes them off when we're out.  

I've tried them on, and they really do block out a whole lot of noise—not all of it, but it's very muffled. Me, I wouldn't mind a pair of my own to block out whining.

Friday, February 15, 2013

Special Needs Blogger Weekend Link-Up: It's real, and it's spectacular

Welcome to another Special Needs Blogger Weekend Link-Up!

The idea

Share a favorite post of the week.

What to do

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

Like this: Love That Max: My Middle Name Is "Try, Try, Again"

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

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

Happy linking!

Thursday, February 14, 2013

Valentines for our kids' therapists: from parents, with love

Some of my favorite people of all time are the therapists in Max's life. Therapists past and therapists present: I have a huge debt of gratitude toward them. They have been key to teaching, enabling, encouraging and enriching Max, helping him achieve to the best of his abilities. They have shown me how to best help him. I am forever in awe of their smarts, patience, dedication, and just how much they care. As much as I've felt like throwing my arms around them and giving them a big old kiss, I have refrained, for which I am sure they are grateful.

This Valentine's Day, I'm spreading some love to Max's speech therapists, J&J.

J #1  has been in Max's life since he was a baby. She faithfully comes to our home every Saturday morning, and that alone is amazing because it's not common in our area to have visiting speech therapists. She brings along a bag of games and crafts, and works with Max at our kitchen table or in his room, depending on his mood. She's a big fan of Colorforms' Silly Faces Stick-On Games, which she plays with him to get him talking. She has shown me oral-motor exercises to help loosen up his tongue and jaw; he speaks so much more articulately when those areas aren't tense. Lately, thanks to her, we have Max biting on ChewyTubes in the morning to help loosen him up—placed on the back molar, 10 bites per side (we use the red one).

While she's with him I sit outside the room to listen in, and I hear J getting Max to say words I've never heard him clearly articulate before—"go" and "ketchup" and "monkey" and "down." She describes  "p" and "b" sounds to him as "lip poppers" and "d" "l" "n" and "t" sounds as "tongue tappers" (as in, your tongue is tapping the roof of your mouth). She gives me guidance on what to tell the other therapists in Max's life, like when I emailed last week to ask what the music therapist could focus on. She is savvy and practical, too. She does not hesitate to let me know she has a concern—but when Max says something great her face lights up, and then I know it is a Big Deal.

J #2 is Max's speech therapist at school. It was J who in May 2010 first asked whether I might be interested in trying out an iPad and Proloquo2Go speech app with Max. "YES!" I said, and Max's world opened up. J is incredibly enthusiastic and progressive. I appreciate how forward-thinking she is because while there are good speech therapists out there, not all are willing to embrace technology like she has.

She is full of good ideas for engaging Max; right now, Max and another kid in his class do a speech therapy session together once a week and J has them telling each other knock-knock jokes on their iPads. She is always coming up with ways to expand Max's use of his speech app. Of course, she also gets him working on verbalizing and articulating words. "Max impresses me every week," she recently emailed. "He is talking so much, combining sounds and then using the iPad. His approximations have increased and improved."


Which therapists are your special needs valentines?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Photo credit: Flickr/
nanny snowflake

Wednesday, February 13, 2013

Couples with disabilities: 5 love stories to celebrate

Reading about couples with disabilities who marry makes me happy, because I get a rush of hope for Max's romantic future. I can already tell he's going to be a ladies' man by the way he flirts with the waitress at the local diner who serves him mac 'n cheese. Although maybe it's the mac 'n cheese. Either way, I have dreams of Max someday finding happiness in love, as he's found happiness in so much in life. (And hopefully she'll know how to make great mac 'n cheese.)

These are a few great love stories about couples with disabilities I've read around the web. Check them out, and have some tissues handy.

Bill Ott, 38, and Shelley Belgard, 36, met at a local social club in Maryland when he was 12 and she was 15. He has Down syndrome and she has intellectual disability, as Ellen McCarthy tells it in her beautiful article for The Washington Post. "I didn't know what love was until I met her," Bill said. He took Shelley to his junior and senior prom, then they lost touch after high school. They reconnected when both signed up for a Caribbean cruise for people with disabilities. They married in September; for their first dance, they chose At Last.

As kids, Lindsey and Nick played together on a Little League Challengers team for kids with special needs; Lindsey has intellectual disability, Nick has Dubowitz syndrome, a rare genetic disorder. They started going out in 2005. "She is a caring, sweet young woman," her mother says. "She once told me, 'Mom, I don't want the same things out of life as you do. I just want to be loved.'" Last spring, Lindsey texted Nick and asked if he'd marry her; they wed last October. "As parents, we hope Lindsey and Nick will keep each other company," Linda wrote on her blog, Out One Ear. "Together, we hope they gain confidence, make wiser (and more independent) 'couple' decisions.... And when all this parental support is gone, they will still have each other. We hope they grow old together." Linda's asking people to send the couple valentines—find out more about her effort here.

A couple with cerebral palsy wed in Israel. If you haven't yet seen the video, you want to.

Nicole Brobeck, who has cerebral palsy, and Curtis Braxton, who has hydrocephalus and a seizure disorder, met at a living skills program in 2007 in Northern California. "I love Nicole because she's so happy and she doesn't let her disability get to her, get her down," he told Today. They got engaged last Valentine's Day, and planned to marry in May. After Nicole's dad died, however, her mother had major medical bills and not much money for a wedding. An organization that was going to throw them a wedding backed out. Then a florist spotted the couple shopping for centerpieces and roped in friends in the wedding industry, and they gave the couple a fabulous wedding. The bride wore a white satin gown decked out with lace, pearls and crystals—and matching white sneakers with lace and rhinestones. Said her mom, "There is no disabled love. There is only true love. And they have it."

And this, a seemingly different kind of story—yet at its heart, it's also about true love. Larissa and Ian Murphy had been dating for 10 months when he suffered a traumatic brain injury in a car accident. She never stopped loving him; they married in August 2010. As she writes, "Marrying Ian meant that I was signing on to things that I don't think I ever would've chosen for myself—working my whole life, having a husband who can't be left alone, managing his caregivers, remembering to get the oil changed, advocating for medical care, balancing checkbooks, and on.... But in light of all the practicals, and emotionals, it was so very simple: We love each other. And we love God."

Tuesday, February 12, 2013

One step forward, two casts

There's been progress. There's been a setback. And that's just the way it goes.

Max has been fascinated with words lately. In fact, he makes us tape little notes onto the kitchen cabinets with his food requests on them because 1) He likes to read them and 2) He is obsessed with mac and cheese and 3) He is obsessed with mac and cheese. The notes say things like "Make Max mac 'n cheese pie!" and "Max likes macaroni and cheese with ketchup." Max stands there and reads them to me, and I love it because he's making real progress with reading and because he is trying so extra-hard lately to articulate words.

And then, WHAM.

Last week, I took Max to visit his physiatrist. His school physical therapist had noted that his left foot was tight, and it looked like it was turning inward again. The pediatrician had mentioned that both heel chords were tight. Me, I've noticed that lately Max has been tripping a little more than usual. He's always been a bit of a tripper, but he's been taking some real spills and miraculously hasn't hurt himself. I kept hoping his feet would right themselves, wishful thinking and I knew it.

Max had been through serial casting in the summer of 2011 for his right foot, and it worked to straighten it out. (Max's right leg and arm have the most muscle issues because the brain damage from the stroke was worse on his left side—the opposite side of your body is weakened.) Ever since that cast came off, Max has been wearing a night cast (custom-made, in purple) and Dave and I have done our best to stretch both feet.

It turns out that both feet need serial casting. I knew it had to be, but my heart sunk.

Max's walking is the miracle of my life. Anytime anything's up with it, I get unhinged. Logically, I know that he'll keep on walking, and that the serial casting will only help. But this is not a logical response. This is from-the-gut distress that takes me right back to that conference room in the NICU where the world-famous neurologist told us that Max might never walk.

Ultimately, the long-term solution will be cord- or tendon-lengthening surgery; just typing those words makes me squirm. Meanwhile, we'll start six weeks' worth of serial casting at the end of February. Every Friday, Dave or I will take the afternoon off from work and get Max to the physiatrist after school. Every week, the old cast will come off and a new, differently-angled one will go on to keep improving range of motion and straightening his feet out.

The casting itself doesn't hurt, and the staffers at the hospital are great. I'm not quite yet clear on how Max is going to deal with getting around with a cast on each foot; it's actually good for him to walk as much as possible, because it stretches his feet. But I'm figuring Max will deal in his usual cheerful, indefatigable way.

Last time he had a cast on, he was in his spaghetti phase and I had to write "Max eats spaghetti sauce!" on his cast. I'm betting this time he'll want me to inscribe "Max loves mac 'n cheese and ketchup!" or "Max loves Cars 2!"

I've got the purple Sharpie all ready. My spirits? Well, they'll get there.

Monday, February 11, 2013

Words of wisdom from a spelling bee champ with cerebral palsy and autism


Meghan McCarty, 9, was her mom's hero long before she won the Dogwood Elementary School Spelling Bee last week. Born premature, Meghan has mild cerebral palsy and autism. "When we were given each diagnosis, I had no idea what to expect," says her mom, Tiffiany. "It has been a long road to where we are, but she amazes me each and every day. She has such perseverance and determination—read, stubborn!—for a young girl. Each time they say she can't, won't or never, she usually does."

Last year, Meghan won the spelling bee for third graders and placed third in the one for her school, located in Knoxville, Tennessee. She's also won honor-roll awards.

The sign Meghan had her mom make for the spelling bee

"Nine is her favorite number—it's just luck that it came her way!" says Tiffiany.

Spelling out the winning word

I asked Tiffiany if I could send her questions to run by Meghan. Instead, Meghan decided to type all the answers herself! Of course, there wasn't a single typo.  

So, Meghan, how did you learn to be such a great speller?
"I learned words when I was two. I like to read."

What were you thinking during the spelling bee?
"'I'm happy be here' and 'I can spell these words.'"

Where did you put the trophy you won?
"Right now it's on the dining room table. I will probably put it in my bedroom with my other awards."

How are you going to get ready for the regional spelling bee in March?
"I'm doing the word club online. I practice words in the car with Mommy. I look at the dictionary."

What are your favorite books right now?
"I like to read Nancy Drew books lately and the Missing Book by Margaret Peterson Haddix, Cam Jansen. I also like to read magazines with drug ads. I also read about different drugs on my iPad."

What do you like to do for fun?
"I like going shopping and going to the library. I like to go to Dollywood. I like reading."

Why do you think kids with cerebral palsy and autism rock?
"Cause we are special and can do anything, just a little different. My autism gives me super powers like hyperlexia and makes me smart. Also you can wear call DAFOs braces with butterflies. You go to therapy and and get occupational therapy, physical therapy and speech therapy and the therapists are nice."

Is there anything else you'd like to share? 

"Always do your best and try and we are Americans not Americants!

My favorite singers are Taylor Swift, Justin Beiber, Lady Gaga and Katy Perry. 

I like to tell jokes. What did the lion say after eating the clown? 'That tasted funny.' HAHAHAHAHAHAHAHA!"

Friday, February 8, 2013

Special Needs Blogger Weekend Link-Up: Now with more posts!

Welcome to another Special Needs Blogger Weekend Link-Up. Still fat-free, preservative-free and full of fiber! (OK, OK, it hasn't got fiber.)

The idea

Share a favorite post of the week.

What to do

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

Like this: Love That Max: Daddy Still Owes Mommy A Birthday Present

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

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

Happy linking!

Thursday, February 7, 2013

Mac and cheese mania continues! What foods are your kids loving?

In other news, Max's obsession with mac 'n cheese continues. Although he has a limited diet because he's not yet able to down crispy, chewy or chunky stuff, I suspect that no matter what kind of eating skills he had he'd still only want mac 'n cheese. It's in his genes. Not to mention, my hips.

Max is still loving the butternut squash mac 'n cheese from the Food Network, but I recently went on a mac-hunt to find other nutritious versions—and discovered a bunch of tempting kinds that kids would never suspect are actually good for them. Here they are, 11 healthy mac and cheese recipes, for your family's eating pleasure.

Which food is your child obsessed with these days? What sort of nutritious softer foods are you making if your child has chewing challenges? Anyone care to drop off some mac 'n cheese?  

Wednesday, February 6, 2013

10 ways to help kids with disabilities write and draw

Reader Momttorney was asking about writing instruments that could help her four-year-old, who has challenges with fine-motor skills. I'm no expert though I play one in real life; over the years, I've found a bunch of stuff that's enabled Max to draw and write. I'm sharing here—please add your ideas, too!

First up: positioning paper so it's easy for your child to draw or write on. The Adapt-Ease Ergonomic Slant Writing Board above is durable and BPA-free. 

You can smoosh Crayola Model Magic around a pencil, pen, marker, crayon or piece of chalk to give it grip. 

One of Max's occupational therapists used to wind self-adhesive wrap around pencils and crayons to build them up and make them easier for Max to grasp.

 Max's school OT recently sent home this Bip Gear Pen Grip; it holds pencils, pens and crayons. Max prefers foam tubing (which you can see him using in this video). It also works well for utensils.

The Writing Claw helps kids grasp crayons, pencils, pens and skinny markers; Max isn't yet ready for it, but it looks helpful.

Alex Creamy Crayons are chunky-ish and glide really easily.

Max has used Finger Crayons (aka bulb crayons aka chubby crayons) for years. Especially purple ones.

Abilitations makes Egg Ohs Handwriting Grips that makes holding pencils easier. 

Add caption
Max likes the app game iWriteWords for tracing letters and numbers; abc PocketPhonics and Writing Wizard  are other good options.

OK, your turn: Please share strategies and suggestions for products, tools and apps that have helped your child draw and write. 

Tuesday, February 5, 2013

New video: Max's handwriting

Max has been writing his name for nearly a year now. Because he's been doing so well with the iPad and speech app, there hasn't seemed to be a strong focus at school on writing letters. At home, either, to be honest. But at his recent parent-teacher conference, we all agreed to get Max going on writing more.

Right now, we're working on the letter "L." For inspiration, I showed Max that Ernie and Bert La La La ode and he found it very amusing. Only now I can't get "la la la la...linoleum" out of my head.

The best writing instrument for Max is a pencil encased in foam tubing. His school OT recommends short, stubby pencils (unlike this one). I kept meaning to buy some until I stopped by IKEA on Sunday and there was an entire bin filled with little pencils for filling out shopping slips and it was like I was destined to go to IKEA and find them and I may or may not have grabbed a handful and shoved them into my purse. Hopefully, I will not have to flush them down the toilet if law officers show up at my house. Although I may or may not have grabbed them.

As you can see, Max refuses to fully wrap his fingers around the pencil—he likes to knuckle it. Not ideal, and I'm hoping we can break him out of that. But, wow, is he determined—and doing so well. And yes, he is seriously proud of himself, as he should be; this doesn't come easy for him. Rounded letters like "b" and "p" will be a lot more challenging, as they are for him in speech. But if I know anything, Max will figure out a way.

Monday, February 4, 2013

Shocking (and not-so-shocking) intolerance of kids with special needs

There's been an uproar this past week over horrific intolerance toward a child with Down syndrome. Lisa Morguess at Life As I Know It wrote about a blog written by a stepmother to an 11-year-old girl with Down syndrome whose posts are filled with frustration, disdain, disgust, anger and flat-out cruelty. The blog has since gone private, but not before Lisa captured screen grabs.

The woman talked of ignoring her stepdaughter. She called her a "full-blown nuisance." She said she got mad at her for no reason; as she herself questioned, "Where do the feelings of hatred and anger really come from?" She made fun of her behavior, at one point listing things that bothered her—everything from the way the child shovels snow to the fact that she does not think to request Chapstick for her dry lips.

The intolerance is extreme and the woman, despicable. Shocking, too. Yet if you have a kid with special needs you know that intolerance towards our kids is not unusual. It's typically not at this level, and it's certainly not always this blatant, but it's very much out there. And I do not think the world at large is aware of that.

Yes, people catches glimpses when the web and media bring stories to light, like the customer at the Houston restaurant who said "Special needs children need to be special somewhere else." Or the woman at the Missouri restaurant seated next to a child with autism who told the waiter, "Except for the retard in the next booth ruining things by making noise, everything is fine."

Max is surrounded by friends and family who are welcoming and inclusive; they have learned that in many ways he is just like any other kid, and they accept his differences. It makes intolerance that much more unnerving when we encounter it. A few months ago, Dave and Max were at a friend's apartment and as they were in a common play area a woman blurted, "Why don't his hands move normally?" And then, "Why is he drooling?!" Dave rehashed the scene for days afterward. He couldn't understand why that woman would have said those things.

Sometimes, intolerance has no words. I will never forget the mom in Barnes & Noble who grabbed her child and hustled him away when Max touched his arm and babbled at him, as if cerebral palsy were contagious. I cannot forget the stare-glares of other mothers; once, in our pediatrician's office, a mom gawked so blatantly at Max that I snapped, "Do you have a problem?"

Intolerance isn't just the wicked stepmother. It is all around, people without patience for those with different abilities, without understanding, without heart. It is what makes life that much harder for our children, people imposing yet one more handicap to overcome. It gives me deep anxiety as a parent, because I will not always be there to shield Max.

Someone alerted the authorities about this mom; she tells of being questioned by a police officer. In a follow-up post, Lisa notes that the local Down syndrome association is aware of the situation. You can only pray that this woman gets the help that she needs, though it's impossible to give anyone a conscience transfusion.

What incidents of intolerance have you dealt with?

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