Friday, July 29, 2011

The cost of therapists for kids with special needs: Let's compare!


I try not to think too much about how much we shell out for Max's therapy, because obviously that is the most financially responsible thing to do. Right. Really, we don't have much choice. He needs extra speech and occupational therapy sessions at home, besides the ones he gets at school, especially while he is still young. An so that's priority spending in our house.

The insurance company pays 70 percent for speech therapy, but has been bouncing back all of the occupational therapy bills because supposedly it's not covered under our plan. (Which means we're in the process of trying to figure out which diagnosis codes will work.) I've never bothered trying to get reimbursed for music therapy because for sure we would get back an Explanation of Benefits that read "You've got to be kidding."

What we pay for Max's therapists (we're in the metropolitan NY area):

Speech therapist #1: $110 for 45 minutes
Speech therapist #2: $110 for 1 hour
Ooccupational therapist #1: $100 for 1 hour
Occupational therapist #2 (who's part of a practice): $155 for 1 hour
Music therapist: $100 for 1 hour
Art therapist (more on her another time, just found her!): $100 for 1 hour

A few weeks ago, we met with an occupational therapist who works for herself and who charges $155 an hour. Sigh. But then again, good OTs and STs who come to your home are at a premium and because I work, we have no choice but to use them.

Hey, I've got an idea! We should start charging the kids for all the therapy we do for them! Max, you owe me millions.

OK, what do your child's therapists charge?


Flickr/Brockney52

Thursday, July 28, 2011

We need more boat rides and hibachi in our lives


Finding new stuff to do with Max that doesn't involve spaghetti and car washes (neither obsession shows any sign of dwindling) can be a challenge. He's often wary and resistant, but Dave and I keep exposing him to new activities and places, because we want to help him push past his fear and open his mind. Also, we get bored.

What I'm realizing, though (special needs parent epiphany #28,716) is that what works best for Max is a mix of the familiar and the new. And so, we come to boat rides and hibachi.

This weekend, we took the kids on a boat on the Delaware River, the same one we we were on last summer. Actually, let me correct that: Max decided to take US on the boat. He remembered exactly where it was in New Hope, PA and scooted right down the path to the dock. His visual memory is just beyond; it's one of his special strengths.

The kids enjoyed feeding the ducks corn when they weren't wrestling each other to get the damn cups of corn. At one point, Sabrina grabbed Max's cup and dumped it into hers. At which point he tried to grab it back. At which point I was PSYCHED to see him using his hands like that, as dexterity is definitely not a special strength. Grab, Max, grab! Don't tell anyone I said that.

Max was a little dubious at first.

But he quickly warmed up...

...and decided to drive the boat. He just ambled up to the captain and, without a word, held onto part of the wheel. Like he'd been driving boats all his life. Said captain was very nice.

The next thing you know, Max was practically sitting in the guy's lap. Pretty soon, he was helping to turn the boat around. Then he spied some kids on Jet Skis and decided he wanted one. We just sort of nodded. Then he did not want to get off the boat. Unlike the car wash, though, we weren't paying for a second ride. Because we are cheap killjoys like that.

For dinner, we tried hibachi. This entailed going to a restaurant Max had never been to before, which is always tricky territory as he's been known to run out of them, screeching, as if someone just served him spaghetti and slugs or something. We've learned to go to dinner really early, before normal humans eat. Like, 4:30 early. We were, of course, the only people there. Max was calm.

I had a feeling it was going to be a hit. A table with FIRE! And sure enough...

...he had a blast. Bonus feat of fine motor skills: He grasped tongs! Max loved cooking the chicken. He kept dumping rice into the dish, and the scorch-y smell wasn't entirely appetizing, but he sat through an entire meal. And did not catch fire, once. He didn't even try to get Sabrina to catch fire.

My conclusion is that we need more boat rides and hibachi in our life. Maybe you do too?

Wednesday, July 27, 2011

Equal fun at the playground for kids with special needs


A Boundless Playground in Greenville, South Carolina opened on Monday. If you've never heard of it, Boundless Playgrounds is a nonprofit that works with communities to develop playgrounds accessible to all kids, including ones with disabilities. There are more than 200 of them now, including ones in two Canadian provinces.

Is it awful to say that I am a leeetle bit jealous?

I am.

We do not have an accessible playground in our area. The adapting has been done solely by me and Dave—going down slides with Max, climbing jungle gyms with Max, holding Max up to reach things, helping him settle into a swing. Max doesn't know any better; he's just having a good time. Me, I ache for one of these playgrounds because they encourage independence. Fun and feeling like you can do it: an unbeatable combo.

Even if our 'hood lacks one, I'm grateful to the CVS Caremark All Kids Can program for supporting Boundless Playgrounds throughout the country. They've donated more than $4 million to projects since 2006—that's 60 Boundless Playgrounds. Soon they're going to be pitching in with the building of the 250th playground.

You can see if there is a Boundless Playground in your 'hood here, find out how to get the wheels in motion here, and register a playground project here.

Of course, it would be so lovely if parents didn't have to take the initiative and accessible playgrounds were a de facto part of our lives. There are approximately 7 million kids with disabilities in this country, and I think it's safe to say the vast majority of them enjoy outdoor play—and want to have just as much fun as their peers.

Do you have an accessible playground in your area? How do you help your child enjoy playgrounds?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a more than $25 million commitment to making life better for children with disabilities. Please "Like" them on Facebook—they deserve it.

Tuesday, July 26, 2011

Lessons in overcoming adversity from the poorest parts of the world


This is ONE Week, a social media event following 10 U.S. bloggers who are in Kenya to see what life is like for moms in the developing world. ONE is the grassroots campaign committed to fighting against extreme poverty and preventable diseases (Bono is famously on its board of directors). The ONE Moms initiative hopes to get many more moms to support life-saving programs in Africa. Take a sec and Sign the Senate petition to urge Congress not to cut back on them, then read this moving guest post by Morgana Wingard, ONE's resident photographer.

One of my favorite quotes comes from a cofounder of ONE, Bob Geldof. He likes to say, and I'm paraphrasing, that the only reason we are not living in poverty—the difference between "us" and "them"—is we happened to be born on the lucky side of the world.

And yet, I think there are huge lessons for those of us here in the lucky side of the world that we can learn from people living in poverty, people who face extreme challenges—high maternal and child mortality, lack of access to education and clean water, high rates of HIV infection passed from mother to child, death of children from preventable causes, and extreme hunger.

The first lesson is perspective. Every one of us needs it once in a while. Though you can probably attest to the problems with the US health care system, and despite personal challenges you may face, we are still lucky. Most of us don't have to worry about our kids if, say, they get diarrhea. Most of us had good healthcare during delivery to ensure that both you and your baby were healthy. Most of us know where our next meal will come from. The U.S. is not perfect—believe it or not, we still have one of the higest mortality rates in the world, and millions of people living in poverty. But for most of us, our problems pale in comparison to those living in the developing world and the poorest places on earth. Consider the challenges a mom of a child with special needs there faces.


Women like Jackline inspire me. Five days a week, for $20 a day, she walks from house to house in villages in rural Kenya to test men, women and children for HIV and counsel them. She educates them about why it spreads, how to prevent transmission and how to get treatment. After only one day of following her around, I was exhausted. But she continued, unphased by the long walks up and down hills. My job, as a ONE photographer, is to convince and petition lawmakers to continue funding programs that keep her employed. But she is on the frontlines of the battle of HIV.

The other lesson I've learned in Africa is resilience. No matter how bad it gets in places I've visited, people always have hope. It's what carries them through situations most of us can't even imagine.


Take Harriet, a 24-year-old who weeks ago found out she was pregnant with her first baby—and that she is HIV positive. She bravely traveled alone for two hours in an overcrowded matatu for an appointment at Mbagath hospital in Nairobi. A doctor explained the effects of the drugs that are the only chance for her child to be born HIV free.


She'll likely vomit daily, but if too much she must rush to the hospital. She can also expect nausea, yellow eyes, rashes and perhaps fever. Despite all of that, she was only concerned about the fate of her child. And she had hope for that child. Like many people there, she will continue to get through her days in the face of some of the biggest obstacles—and, hopefully, have a healthy child.

Monday, July 25, 2011

Inclusion camps for kids with special needs


After the success of Max's week at sleepaway camp, I've been looking into options for next summer. He might return there but I also want to find out about day programs that mix kids with special needs and kids without. An inclusionary program. A couple of comments on my "Should he stay or should he go?" post had gotten me thinking (a rare occurrence): Why should Max always do special needs programs? It would be good for him to be around so-called typical kids. (I always say "so-called" because, really, what's typical?)

It's been a sobering search. First I asked on my mom e-loop to find out which camps in our area host kids with special needs. The first one I called said that I would have to hire a person to "shadow" Max. A possibility, but I wasn't that gung-ho about finding someone given that I like to lie around all day doing nothing except asking the kids to feed grapes to me. The next camp I called wouldn't let Max come for less than three weeks, even though I explained that Max is in a year-round school program and only has off for two weeks at a time. Another camp was more geared toward children with cognitive disabilities. Another said that they do hire shadows for kids, but the fact that Max wasn't potty trained was a deal breaker. I told them how disappointed I was.

I am honestly not sure whether Max's resistance to potty training is because of his disability or because he is mentally unwilling. Probably both. Kids with cerebral palsy, who have issues with muscle control, may not always feel that gotta-go urge. We think Max does, although the other night, he was wandering around in his birthday suit before bathtime and he let out some poop on the floor.

I sighed loudly, and Max said something to me. I thought it was "I'm sorry" and perked up. Good! He realized it was gross.

"Nooooo," he said, shaking his head. Then he said it again. That's when I realized he was saying, "It's funny!"

"No, Max, it's not funny!" I said.

He laughed and again told me it was funny. Boys and poop, what can I say.

Today I printed out a bunch of color photos of an electric Lightning McQueen car and I am posting those suckers all over the house. If he potty trains, he gets the car.

Anyway, back to camp. Last Friday, I visited the a camp that has a dedicated program to including kids with special needs. Why it's the only one in our state, I don't know. They find the shadow, although he or she is officially considered a "counselor" and the other kids don't know that he or she is there to specifically watch your child.

I am telling you, I almost had tears in my eyes as I did the tour. The program director pointed out the shadows as we walked around, who blended right in with the rest of the counselors. No kids seemed to be outsiders or "special." There were just hordes of kids mingling and having a great time. I think we're going to try Max there next summer for a couple of weeks, and I am psyched.

Meanwhile, today a reader (thanks, Sara!) emailed me about Camp Bennett, a camp in California for childhood stroke survivors. It's a three-week intensive therapy program for kids with intensive brain damage. Bennett is the son of the camp's founder, Audrey Vernick; when he started having seizures at five months old, doctors discovered he'd had a stroke in utero.

Camp Bennett sounds incredible, even though it might not be Max's idea of a good time. There's a big focus on constraint-induced movement therapy, in which a child's stronger arm is restrained in a cast, forcing the brain to recognize the weaker arm and get it moving. Max's challenges lie more in his hands than his arms. Even though his left hand is the better-working one, nobody would consider it "good." There's also a similar program in our neck of the woods, Helping Hands. I'm not ruling it out.

Maybe Max will just spend next summer camp hopping. Maybe I will open Camp Spaghetti With Sauce. We shall see.

Have your kids been doing camp this summer? Found any good inclusionary activities in your area lately?

Sablog: a "blog" by Sabrina, age 6


Sabrina and I finally had a talk about this blog, in the organic way I'd hoped it would come up. She saw it open on my computer, read "Love That Max" out loud and asked "Is it called that because he has special needs?" She is so amazingly intuitive. I explained to her that the blog is for other moms and dads who have kids with special needs. Then I showed her posts with photos of her, and she was really excited. Then she wanted to write a post. She chose the colors.

Honey, what have you been doing at camp that you've really enjoyed?
"I wanted to do hockey and I really loved hockey. And I love swimming. And the sno cones! We got to eat sno cones! And they had water rides on Friday! And I, um, loved that I lost my tooth there. I pulled it out!"

How many teeth have you lost so far?
"Three."

And what do you think of the tooth fairy?
"Well, I got a lot of money for my first tooth and I was very happy. Oh, I want to get the tooth fairy money in coins next time!"

That will be a lot of money under your pillow.
"That's good!"

Where does the tooth fairy live, do you think?
"In the sky."

Good thought! OK, what kind of stuff do you want to do this weekend?
"I want to go to gymnastics. And I would like to on Sunday have movie night and popcorn! And ice-cream!"

That can be arranged! And what does Max like to do for fun?
"He likes to go to camp and play with friends. He likes to eat spaghetti sauce."

Is he your favorite brother?
"Yes, silly Mommy, because he is my only brother."

Wasn't Max being so funny last night? Remember what he was doing?
"He was walking around sticking his belly out and pretending he was pregnant! He was just pretending because boys can't have babies. Only girls can have babies. And frogs."

Let's have that discussion another time! So, are you a good little sister?
"Yes!"

Always?
"Of course! That's all the questions. We're done!"

Saturday, July 23, 2011

In which Max wears spaghetti on his head


I try to help Max fit in with other kids, the reason I didn't get him those Purple Crocs back in April.

This weekend, he discovered the "I Am Spaghetti" card in the Hedbanz game. (There is no sign of his obsession letting up; I wouldn't be surprised if he requested spaghetti ice-cream one of these days.) Max's new head gear has made him so happy that we've let him go everywhere with it on—for a walk around town, to stores and on other errands. He wore it in his bath tonight.

Some people smile and some stare. Max is just psyched. For once, he doesn't have to go around calling himself Spaghetti Sauce Max because you can see, clear as day, that he IS spaghetti.

I am glad that so far, we haven't bumped into any of the neighborhood kids as I suspect this wouldn't do much for his image. Meanwhile, though, Max is having a spaghetti-tastic time.

What sort of stuff are you letting your kids get away with this weekend?!

Thursday, July 21, 2011

Slams against people with special needs...and one bit of awesome


I've been simmering all week over slams against people with special needs. As in, I need an exorcism or something to get them out of my head.

First I saw something despicable on a news aggregator site: A commenter had posted a photo of a smiling little girl with Down syndrome imprinted with the words: "I can count to potato."

Blood.

BOILING.

You could have imposed those words on a picture of some clueless politico or celeb, and it would have been funny. But a little girl with Down syndrome? That's cruel, not to mention vile.

Then I heard about the GQ slam. The magazine named Boston its top worst-dressed city and said it "suffers from a kind of style Down syndrome." Brian Skotko, a doctor at Children's Hospital in Boston who has a sister with Down syndrome, wrote a post lambasting the reference. As he said, "My 40,000 fellow Americans with Down syndrome have been cheapened, and I will not take it." The magazine subsequently removed the reference from its website. To date, there's been no public apology.

Ignorant people who are so pitiful they stoop to making fun of kids with special needs are one thing...seemingly. The fact that editors at a respected magazine like GQ let that phrase fly just goes to show that ignorance exists in every stratosphere of society. Even well-educated people (as I assume the editors there are) see nothing wrong with demeaning people with special needs.

So I had that stuff on the brain this week, accompanied by some other crapola that unexpectedly came at me. And then, I discovered this bit of awesome in the Nordstrom Anniversary Catalog, courtesy of Noah's Dad:

And suddenly, I felt a little better.

Wednesday, July 20, 2011

iPad giveaways for kids with special needs


Months ago, I said I'd give away an iPad here, paid for with a fee I'd received for attending a salon on social media for social good. This seems like a fine time to give away an iPad 2 to a kid with special needs, along with a Proloquo2Go speech app. The folks at Care.com—a place for finding caregivers for kids, parents, pets—have generously donated another iPad and Proloquo2Go app (I've done work for them). So we will have two iPad winners.

The iPad and Proloquo2Go have opened up Max's world; he's been able to communicate in ways that he never could before. Right now, I'm working with his speech therapist at school to add sentences. Here's Max using the app for his favorite topic of conversation, spaghetti (what else?), and what his best bud likes to eat:


Each winner will receive:

• One iPad 2 16GB with Wi-Fi in your choice of black or white (valued at $499).


• One Proloquo2Go speech app (valued at $189.99).

• One iPad Smart Cover in a color of your child's choice, based on available colors ($39).


To enter to win an iPad, leave a comment below about how you believe an iPad and Proloquo2Go speech app could benefit your child. No need to get into detail, just share what you want.

Each winner will be asked to provide a letter of need from a speech therapist or doctor in their child's life. The letter from the therapist or doctor must include her qualifications and contact information so that he or she can be called to verify that, indeed, the recipient is a child in need of an iPad and speech app.

This giveaway is open until Tuesday, Aug 9, 2011 at 11:59 ET. It is open to U.S. and Canadian residents 18 and older.

RULES OF ENTRY

• Valid email address required. I need that so I can reach you if you win, as my ESP is not up to speed. So if your email is not visible on your blog, you will need to leave it wth your comment. If there is no email, your entry is disqualified.
• One entry per family, please.
• No entries accepted past the deadline.
• Other blogs and sites are doing iPad giveaways for children with special needs, including a4cwsn and Mission iPossible. If you happen to win an iPad both here and elsewhere, I respectfully request that you voluntarily bow out of one so another child in need can get an iPad. Think: karma.

WINNER DETERMINATION

• I will choose two winners via the website random.org within 24 hours after the giveaway is closed, and this post will be updated to include screenshots from random.org of the winning comment numbers. I will email the winners at that time.
• If I do not hear back from a winner within seven days, another winner will be chosen.
• If a winner does not produce a letter from their child's speech therapist or doctor within two weeks of being informed of the win, another winner will be selected.

GETTING THE IPAD/APP/SMART COVER

• Each winner's iPad and Smart Cover will be ordered within one business day after I confirm information with the child's therapist or doctor. The iPad and Smart Cover will be shipped directly to the winner. The arrival dates will be based on Apple's estimated arrival time.
• I will email the iTunes code for the Proloquo2Go app directly to the winners.

Word, the IRS requires that you report winnings from sweepstakes.

Good iLuck!

UPDATE: THE WINNERS

After narrowing down the qualified entries and counting them, I selected the winning comment numbers via random.org. The winners of an iPad, Proloquo2Go and Smart Cover are Sandra (#117) and Kristine (#41).


The winners have been notified by email, and have two weeks to send in a letter of need from a doctor or therapist.

This couldn't have been a merit-based give away because all of our children deserve iPads and speech apps. The comments here are so moving; I've read and reread them. I wish I were Oprah and I could say, "Everyone, look beneath your seats!" For now, I hope you will enter the iPad giveaways on other sites, and encourage your school districts (if your child is school-age) to consider getting your child an iPad and speech app. I also hope that others who read this blog now understand just how much of a need there is for iPads for kids with special needs—and can find ways to help. I will be thinking on more ways to get iPads into the hands of kids who could use them. Thanks again to Care.com for their generous donation.

Tuesday, July 19, 2011

How to annoy your child with special needs (and do him good)


Step 1: Decide that you are going to help your child overcome his fear of ____. Sure, your child may have never gone to, say, a movie theater because the booming sound and dark scare the heck out of him, but hmmm... How about a DRIVE-IN movie theater? Perhaps that could do the trick. Experience has shown that once you find a way to push past the fear, your child usually realizes how enjoyable things are.

Step 2: Pick a movie your child will love, such as Cars 2. Find a drive-in movie theater and make a pilgrimage there. Cruise in to scope out the scene as your child wails-screeches in the back seat and vehemently shakes his head "NO."

Step 3: Leave the scene of the crime and go have dinner. Make it a complete drive-in evening and take the family to a drive-in eatery so you never, ever have to leave the comfort of your minivan! Realize that you have become extremely suburban. Not that there's anything wrong with that.


Step 4: Return to the drive-in movie theater as your child screams in the back seat. Worry that he may someday require therapy for this, a new form of child abuse.


Step 5: Stick fingers in ears.

Step 6: Grab a spot close to the screen. Put car DVD player on. As movie starts, be the only car in the lot, and perhaps in the history of drive-ins, to simultaneously have a movie playing on the DVD at the same time. Wonder what the people behind you are thinking. Decide that you do not give a crap.

Step 7: Watch with deep, deep satisfaction as child suddenly realizes that it's Cars 2 playing up on there on the screen, calms down and watches contentedly.

Step 8: Fall asleep from emotional exhaustion; wake up as movie credits roll and child says "MORE!"

Monday, July 18, 2011

8 ways to get a child with special needs into sports


Max spotted his baseball coach when he was at camp the other week, because she had a kid there too. She called to tell me that he ran right up to her with the biggest smile on his face, and pretended to swing a bat.

Max is excited about all things softball. He has mixed feelings, however, about the special-needs soccer programs we've taken him to. Once, he ran screaming out of a karate studio, so there's no black belt in his immediate future, although he can give a pretty strong karate chop to your arm if your name is Sabrina and you're his sister and you have ticked him off.

Now that he is a camp champ, taking him to the All Kids Can Baseball Camp next summer seems like a possibility. Sponsored by CVS Caremark, it's a one-day experience held at Fenway Park in Boston. Kids on Little League Challenger teams, Miracle League teams, and other inclusive teams get to hang with the Red Sox batting coach, sit in the dugout, get a VIP tour of Fenway park, watch a Red Sox batting practice, then see a game. OK, so what if we're Yankees fans—that camp would be all kinds of awesome.

Boston Red Sox hitting coach Dave Magadan helps a 9-year-old with her swing at batting camp.

Through work I'm going to be doing with All Kids Can, a fund that sponsors programs and efforts for kids with special needs, I got to speak with a coach whose team has been to the baseball camp. Brenda Hyland of Swansea, Massachusetts, started a Little League Challenger Division team five years ago because she wanted her grandson, who has autism, to play ball. She shared some tips for getting kids involved in any sport, and I'm sharing photos readers sent of their kids doing sports.

To find sports for kids with special needs, ask. "My grandson's developmental pediatrician recommends kids to our team all the time. Ask the doctors, teachers and other experts in your life. They hear about these programs. And contact local support groups. In our area, for instance, we have Community Autism Resources, who know all about our team."

Pacey, age 3 in this photo, is on a soccer team.

No worries, your child can do it. "One little boy in a walker this year decided he's not using the walker. He's wobbly and it takes him awhile to get to first, but he does it! Either way, the kids are having fun. That's what matters. Any child can play and have fun."

Danielle, 17, has developmental delays. This is her at The Long Island Show Series for Riders With Disabilities.

Ease them in. "If you have a child who's scared of new experiences, bring him or her to the field or wherever the sport is played ahead of time and let them see it. If a child loses it during a game, give him a break and let him sit with you or take a walk. It's not a good idea to leave—he'll think that if they don't want to be there next time, he just has to have a meltdown! You might also want to bring something he's comfortable with. One kid brought one of those big, fat bats to games and used that. After a few games, he used the regular bat."

Kenyon, 9, has cerebral palsy and epilepsy. He plays on a Miracle League and also does assisted rock climbing, "but his favorite is bowling," says Jen.

Keep at it. "Our grandson would sit around, watch TV and be on the computer all day long if we let him. He likes to say 'No baseball!' and we'll say 'Yes baseball!' Once he's there, he's thrilled."

Caleb, 5, "was born with spina bifida and hydrocephalus. He plays on a Miracle League team and loves it," says Cassie.

Talk about the friends your child will make. "When we went to the CVS baseball batting camp, two 12-year-old boys developed a friendship. They are both autistic, and don't have other friends. Boys don't want to hang with them because they do things younger kids do, like play with Ninja Turtle or Hot Wheels Cars. But these boys had baseball in common. It bonded them."

Sarah Kate, 8, has cerebral palsy. This year, says mom Andi, "she's done swim team, soccer and a fun run...so far!"

Start a fan club on the fridge. "For one of our kids, there was always a picture of his brother on the fridge in a baseball uniform. After we took the team photo, his mom put the photo of him in uniform on the fridge, too. He was so excited!"

Alvin, 4, has aspergers and does gymnastics for social and motor skills.

Ask parents about other activities. "From being on the team, we hear about other activities, like a basketball league and a bowling league for kids with special needs, and school programs, too. Parents have great resources."

Simon, 5, has cerebral palsy and epilepsy. He plays T-ball with League of Dreams.

Change your expectations. "We see parents pull their kids out of games because they're running around in the outfield instead of hitting the ball, and they think they are never going to play. I say give it a season! People are used to playing in a certain way. They expect an all-star—they just got a different kind. They're all all-stars to us."


This post is the first in a series of posts sponsored by CVS Caremark All Kids Can, a multimillion-dollar commitment to making life better for children with disabilities. "Like" them on Facebook!

Saturday, July 16, 2011

Mommy Is A Poopiehead: the speech program


Max and I are in the car, doing errands. I constantly talk to him when I drive, encouraging him to talk back and say more than "Noooo" and "Eeee-yah!" ["Yeah!"] and "Ah-eh-ee oss!" ["Spaghetti sauce!"]. Today, nothing seems to be working. So I decide to have some fun.

"Max, you're a poopiehead," I say.

He cracks up. Like a lot of boys, he tends to think anything involving the word "poop" is amusing.

"OK, Max, now tell Mommy that she's a poopiehead!" I say. "Poopiehead" would be a thrill to hear; I have yet to hear Max say a "p." The "hard" constants—b, d, g, k, p and t—are tough for him, because of the air control needed. "B" and "p" also require mouth closure, and that's not a natural position for Max. His jaw veers between lax and tight, thankyouverymuch cerebral palsy.

"Max, say 'Mommy is a poopiehead!'" I repeat, laughing. He giggles. Perhaps he thinks I'm whacked.

"Come on, Max!"

And then finally, he says "Ohmmy es oooeeeay." And I am psyched.

You will not find me touting the Poopiehead Speech Program on informercials or anything. It comes from the theory of "Whatever works, WORKS." I highly recommend it.

Thursday, July 14, 2011

Don't donate another cent online until you read this. Please.


I don't know about you but after all the murkiness and muck of what's been going on, I had questions about donating money online. Sandra Miniutti, the vice president of marketing and CFO for Charity Navigator, kindly answered some questions for me. The site is my go-to source for looking up charities, because it ranks them based on financial stability, and tells you how much of your $ goes to administrative costs—and how much actually goes to the people who need it. While Charity Navigator doesn’t touch on blogs, Miniutti—who’s been at CN since its launch in 2002—had good insights to offer. Take note, do-gooders: Your heart may be in the right place, you just want to make sure your money ends up in the right place, too. But you knew that.

What should people consider before making any donation online?
"I think you need to tread carefully, especially with issues that tug at the heartstings. Kids with special needs, sick children—those are the areas where we find the most unscrupulous behavior. And if you have a child like that, it’s a personal issue for you, and easy to get caught up. Be cautious, whether you’re sent emails with links to a cause, you see something on a blog, or you’re sent links on Facebook and Twitter. With the way technology is, it’s easy to set up a bogus website and solicit funds. There may not be a legit person or charity behind it."

How have things changed with online giving since you started at Charity Navigator?
"For one, the way scams operate has changed. For example, after Katrina, the FBI found 4000 bogus websites. When people entered their personal information, both their money and identity got stolen. Many were set up by people overseas. They created websites that look like real charity sites, with names like KatrinaHurricane that sounded legit."

For those of us who know so many families’ personal stories from the blogosphere, and who really want to help kids in need, what do you recommend?
"I first recommend investing in a charity that’s helping families or with research, unless you know the person firsthand. Less altruistically, you’re not eligible for a tax deduction if you give money to something that is not a public charity."

This is tricky territory. I “know” families online, even though I’ve never met them in person…at least I think I know them. What to do?
"It’s risky. Unless you know the person, I wouldn’t be giving through a blog. My son had a friend this year who got sick, his family put up a personal blog. I knew them in the real world and so I felt comfortable supporting them. I wouldn’t feel the same about someone I haven’t met. You have to weigh the risks. Will you feel burned if your money doesn’t go where it’s supposed to? It’s a personal choice."

There are bloggers in the special needs community who are well respected and who have helped raise money for people in need. What do you think about that?
"If someone is known in the community, is a thought leader, has a good following and has been around, that’s safer. I think the majority of people are trying to help each other. But you still have to be careful!"

Widgets like ChipIn! and tip jars have made it easy to donate money online.
"There’s a proliferation of them, and you need to make sure your personal information is secure if you donate through a widget. Look up how the widget works."

What are your thoughts on bloggers who do giveaways and simultaneously ask for donations?
"It’s not an area Charity Navigator focuses on—we’re looking at legitimate charities and what they’re filing. But if it doesn’t pass your smell test, beware. Also, regarding anonymous bosses who are supposed to be matching funds—I've never seen a corporation who didn’t want to shout from the rooftops about being charitable. Most companies want the public goodwill, and make sure everyone knows. It’s unusual for a corporation to remain anonymous when giving."

How can you make sure a nonprofit is valid?
"You can see if they have an Employee Identification Number—a charity tax ID number. A lot of charities do display their EIN number. If one doesn’t, email and ask. You can also check Publication 78 on the IRS website to see if they have nonprofit status, although depending on when they filed, they might not yet be listed. That said, it’s very easy to get nonprofit status—there are a million charities in the US, and not a lot of barriers to entry. The IRS is not vetting them, they’re not checking on the ethics of a foundation or charity, or financial stability or results or any of that. There are not much checks and balances. It’s like the Wild West out there."

For more tips, check out "Evaluating charities not yet rated by CN."

istock/Stavklem

And this is how the cross-dressing started. Not that there's anything wrong with that.

Something interesting happened last night. For months now, Sabrina has been wearing only boy clothes. Mostly Max's, but also items she insisted I buy her from the boy's department at Target. She refuses to wear tanks, pretty shirts, or dresses, and when you ask her to put on a nice top because we're going to a restaurant, she will come downstairs in a SpongeBob SquarePants t-shirt that she may or may not have pulled from the clothes hamper. Once, in desperation, I offered her five bucks to wear a dress to an event. She turned me down. She does not do cute shoes. She does not like putting her hair into ponytails or braids or anything remotely girly.

And so tonight, when I came home from work, I was surprised to see she'd done pigtails.

Too bad they were on Max.


Come on over to parents.com today and check out the new blog I'm doing there a couple times a week, To The Max. Yep, that's the old name of this blog—recycling's a good thing, right? Today's post: The quirks you adore about your child—and the ones that drive ya nuts. Can you guess what I said? Bet you can.

Oh, and if you have photos of your child participating in any sports (whether in your backyard or on a team), and you would like him or her to be featured in an upcoming post on kids with special needs and sports, please email them to me with your child's name, age, and your blog name and link (if you have a blog). lovethatmax[at]gmail.com

Wednesday, July 13, 2011

Love, love, love that Sabrina


"How does Sabrina feel about your having a blog called Love That Max?" a blogger friend recently asked me. My heart lurched. Nobody had ever asked me that (not that I haven't thought about it). "Well, she isn't yet aware that I blog about Max," I said, and left it at that. And then I kept thinking about the question for the rest of the day.

Sabrina may not yet be clued into the blog, but she is very aware of the fact that Max gets extra attention, and she's always trying to get in on it. For one, she likes to crash his therapy sessions at home. I don't blame her—they're a blast! Max and the therapist hang, toss back a few brews, play air guitar. OK, that's not what happens at sessions. They drink wine. Anyway, usually it's fine for her to join in, although if Max really needs to concentrate we have to lure her to the basement playroom to get out of his way (he usually does his occupational and speech therapy sessions in his room).

Since we got Max's new purple night brace for his right foot, Sabrina's been coveting it. Like she needs to accessorize or something. Last night, I let her try it on and she clonked around in it and Max thought that was a laugh riot. She is also madly jealous of Max's iPad. She knows that he gets to have one because he uses it for speech purposes, but really, he uses it a lot to watch YouTube clips of car washes. "See?" she'll say. "He's just having fun! I waaaaant an iPad too!"

Sometimes, Sabrina helps care for him. She'll wash him in the bath and shampoo his hair, although she does charge him extra for pedicure services.

On days when they like each other, they do this for fun.

Last week, while Max was away, we gave Sabrina lots and lots of attention, including the all-day Fourth of July celebration. It was her first week at camp, and at night when she came home, we went out for ice-cream and talked about her day. It was a big week for her: For months now, she's been tugging at various teeth and telling me they were loose (they weren't), and then suddenly one really was. It hung in there for a few days and fell out at camp.


Sabrina still pronounces words with "th" as "f" so she keeps saying "MY TOOF FELL OUT! MY TOOF FELL OUT!" Which makes me want to hug her and never let go. Also, she gets these freckles during the summer that another mom described as looking as if someone has sprinkled cinnamon on her cheeks. Yum.


I'd gotten this adorable fabric tooth holder from my friend Megan, mom to Sadie Marie (her Etsy shop will be open again in a few weeks). Sabrina tucked it under her pillow. And then—parent nightmare!—Dave and I both conked out early, and Sabrina woke up earlier than usual. At 6:07 a.m., she marched into our room and said, "The toof fairy didn't come!" I kept my cool and said, "It's too early, she likes to sleep late on weekends." Then we tucked in some money as Sabrina hung out in our bed. She says she is saving up for a convertible. "Will you give Max rides in it?" I asked. "Yes," she said.

When I decide to explain this blog to Sabrina, and I probably will this year, I am hoping she'll understand why it's called Love That Max and mostly about raising him, even though I also write about her. It's tricky, because I've tried to help her see that Max is just like other kids, though he may do things in different ways or take longer to do them. But hel-lo, I have an entire blog dedicated to what it's like to raising a kid with special needs. Still thinking on that one.

Later this month, I'm taking Sabrina to her first workshop at The Sibling Support Project, a national network of programs geared toward brothers and sisters of people with special needs. I think it'll be great for her. Me, I'm planning to ask the workshop leader some questions about getting Sabrina to stick up for Max in front of other kids, something I've struggled with. The other day, Sabrina was at a friend's house and I brought Max to pick her up. Sabrina, her friend and the friend's little sister ran upstairs and locked themselves in a bedroom. "I don't like Max," I heard the friend's little sis say. Sabrina didn't say a word.

Also: I'd love to know how to get them to stop fighting/maiming each other in the back seat of the car, though I'm not sure they can help me there.

Tuesday, July 12, 2011

The Spaghetti Manifesto: On special needs parenting


The following was inspired by the commenters on last week's post who criticized my tendency to ask cooks at restaurants to cut up my son's spaghetti. If nothing else, I think we could all use a distraction right about now.

As the parent of a child with special needs, I am going to find ways to make life better for my child. And so, I am going to ask the chef to dice spaghetti, with one of his sharp cook's knife, because it will be easier for my son with cerebral palsy to chew it—and easier for him to feed himself. Chefs make accommodations for diners all the time. This is a small one. Sure, I could do this myself at the table. Except...

I am going to find ways to make life easier for myself, too. And so, I am going to politely ask to have the cook to chop the spaghetti when I'm at a restaurant because it's one less thing to do among the many, many things I do. This does not make me "entitled," as one commenter said. It makes me sane.

Do not judge me for such requests. Our kids may need adaptive equipment, but as parents we need adaptive strategies. Each of us have our own. Spaghetti served already chopped? Bring it on!

Spare me the I-am-a-better-parent-than-you attitude. Just because you choose to cut your child's spaghetti and I choose to ask the chef to do it does not make you a superior parent. No, for that you do not win The Nobel Prize for Parenting (although if you ever showed up at my door with a plate of pre-cut spaghetti, I would totally appreciate it).

Do not assume that you know what my child does or doesn't need. Our children may fall under the umbrellas of "cerebral palsy" or "autism" or "Down Syndrome" or "ADHD" or whatever but each of our kids has unique needs, wants and challenges. Your child with cerebral palsy may not have any trouble picking up a spoon and feeding himself. My child with cerebral palsy has a lot of trouble picking up a spoon, scooping up food and guiding it to his mouth. Finely chopped spaghetti is what my spaghetti-obsessed child needs. And you know what? I'm going to, wait for it, ask the chef to cut the spaghetti.

Do not assume that I am "lazy," either. If I want to spend most of my time at a restaurant enjoying the kids and/or trying to placate my son (who gets unnerved in public places at times) and/or trotting after my son when he decides that he wants to roam around, instead of spending any amount of time chopping spaghetti, I will.

Let's lose that "It's the Mom's job" way of thinking. It takes a village. It really, really does. Go Team Spaghetti Sauce Max!

As parents of kids with special needs, we should be supportive of each other. Like strands of spaghetti, our lives can be slippery and wiggly and hard to control. Let's encourage, not condemn, each other.

Monday, July 11, 2011

Camp for kids with special needs: SCORE!


So there I was, not knowing if Max would do OK at sleepaway camp last week, even though it's one completely geared toward kids with special needs. He's never been away from us; would he get homesick? He always gets up in the middle of the night and comes to our bed; would he freak out if he woke up? Would he get intimidated by all the kids at the activities, given his anti-crowd tendencies? Would they feed him OK? Give him plenty of spaghetti? Go along with his purple requests?

We dropped him off Sunday. Monday, the camp director called to tell us that Max had been dancing the night away at a party. Oh, and then? They sent photos. Max is a perpetual happy camper but I don't think I've ever seen him looking so ecstatic. The only time he got upset was when there were some fireworks on July 4th, although he calmed down once he went inside.

The camp hosts about 60 kids per week, close to 500 every summer. Some campers get their own counselor, some share one, depending on their needs. Kirsten rocked. She's from Scotland and super-nice. She said Max especially loved swimming. I know he enjoyed arts and crafts, because he came home with a bunch of (what else?) purple pictures.

From what I heard, Max slept through the night (of course, he reverted right back to his bed-crashing ways at home).

This is how he looked when we picked him up. His favorite mode of transportation, some of you may recall.

Max decided to give us a tour of the camp before we went home. There was a sing-a-long with counselors and campers, and he busted some moves.

One last time on the slide. And another. And another.

Oh, and one more time with Becca, a cool counselor from England who already knew Max because she happens to read this blog. (Cue "It's a small world after all!")

Yes, I had qualms about sending Max to camp. I appreciated all the encouragement I got here. I was ready to drive to camp and take him home if he couldn't handle it, only it turned out I was the only one who got unnerved. This week was great for Max, both because he had fun and because he flexed his independence. Meanwhile, Dave and I had extra time for Sabrina and some for ourselves, too.

I would do it again next summer and I know for sure Max would, too. I'm also looking into possibilities for integrated day camps.

Meanwhile, anyone got a golf cart we could maybe borrow?