Tuesday, April 30, 2013

A guy with Down syndrome becomes a web victim, and his parents sue


How horrified would you be if your child's photo spread around the web with a derogatory caption?

How horrified would you be if your child had Down syndrome and the caption was a slur against people with special needs?

It's happened, and you don't need to be those parents to feel their horror. Now, they're suing in what's said to be the first case of its kind.

It's about time some haters got their due.

Pamela and Bernard Holland are parents to Adam, who has DS; they live in Nashville. At 17, Adam took an art workshop in which he made a sketch that read "Go Titans One." A photo of him holding it went online (you can see it here). And then, it got swiped and people started writing nasty captions. It ended up on the website of Sarasota, Florida radio station WHPT-FM, with the sign Adam holding Photoshopped to read "Retarded News."

"Retarded News" is a segment on The Cowhead Show, one of the radio station's programs. It's designed, court papers say, "to highlight odd stories that are seemingly always in the news. These stories are NOT about disabled individuals."

That may be true, but a radio segment labeled "Retarded News" is offensive to anyone with intellectual disability—it's equating them with weird, stupid stuff. (If you are new here and don't totally get why the word "retard" demeans, read this.) The Cowhead Show still has a YouTube video up called "Retarded News Theater" with a voiceover by a man speaking in a slow, slurred voice. You'd have to be a pretty pathetic human being to find that amusing.

The Hollands are suing the parent company of the radio station, Cox Media Group, along with the Sign Generator website and a Flickr user for featuring images of their son with derogatory captions. Sadly, I've seen photos of Adam online with these captions; I never knew who he was until now. I've seen it happen to other children and young adults with Down syndrome, too. You might recall that something similar happened to Heidi Crowter, a young woman with Down syndrome. A photo of her as a child was stolen online and, for years, used in a nasty photo meme, often with the words "I can count to potato." Heidi's mother put up a Facebook page begging sites to take down the photo.

The Hollands' lawsuit won't stop the slurs, of course. Perhaps the case will establish legal precedents, however, for misappropriating images online. Meanwhile, these parents are sending a message: You can't make people with special needs the victims of defamation and cruelty online without consequences, legal or moral. And they're raising more awareness about an awful word that's no joke if you are a person who's intellectually disabled, or you love someone who is.

Image: Flickr/Hryck.

Monday, April 29, 2013

Really fun therapy for kids with special needs: It's called "pinball"


I haven't yet been to a therapy center that offers pinball therapy. Max's occupational therapists have yet to recommend it, though I feel certain they would endorse it. Insurance surely would not pay for it. But it's awesome, and a good reminder that therapy comes in all shapes and forms.

We'd road tripped to Asbury Park, NJ, our first time down at the shore since Sandy; the boardwalk reopened just last month. Wandering around we came upon the Silverball Museum Arcade, home to 150-plus pinball machines, some of which date back to the 1930s. We paid a flat fee to hang out for an hour.

We found Max a tall chair to sit on, and he played using both hands—always a big deal, since he tends to mostly want to use his left hand, the stronger one. Dave helped him out.


When Max was a tot, the thing that used to most stress me out—well, other than the what-will-he-be-like stress—was whether I was doing enough therapy for him. I never felt like I was, especially because each of his therapists (the occupational therapist, the physical therapist, the speech therapist, the vision therapist) gave me exercises I could do with him. 

There was no possible way I could have done all of them, unless I performed therapy on Max while he slept, but that didn't stop me from freaking out. I so badly wanted Max to walk, to babble, to be able to  grasp toys and spoons. I felt like not doing all of the exercises was impeding his progress. Then I'd despair that I just wanted to enjoy my child and I wouldn't do any exercises all weekend long. It was a vicious cycle.

Some things were a natural part of our days, which of course is the best kind of therapy there is. I'd bicycle Max's legs and massage them while he was on the changing table. I'd stretch out his arms when I dressed him or when I got him to do "How big is Max? SO big!" In the bath, I'd massage his face and jaw with a washcloth to loosen him up. We'd crash toy cars as I helped him grasp.

I always wanted therapy to be fun for Max, and the best therapists knew how to make it so. I learned to ask them to refrain from saying it was "time to work." I figured Max had a lifetime of therapy ahead of him, and I didn't want him to consider it work. But, yes, there were exercises that were just...exercises. And there were times when getting Max to play with toys was exhausting.

Max has come a long, long way. Therapy has most definitely helped, as has Max's determination and good old luck. There are still plenty of therapy to-dos (massaging his feet and arms, practicing walking downstairs and grasping pencils and articulating consonants), and that's the way life is. Max is more into playing games, which helps; one super-creative OT recently came up with"Word Twister. She taped words over the circles on the mat and when she says one, Max has to bend down to it and stay in that pose.

Max is also more open to experiences and places that flex his muscles and brain power. At the zoo, we name animals and mimic sounds they make, get a good sensory experience in the petting area, stretch his legs and core on a pony ride. On an errand at Target, Max can push around a shopping cart with both hands, place items in there, help figure out the right amount of money to give the cashier. Playing T-ball, going to a museum or the playground, holding an ice-cream cone, dance party at our house—check, check, check, check.  

Just his concentration alone at the pinball arcade was an amazing feat, this despite the pling-pling-plings of the many machines and kids running around.

 Bowling therapy was also excellent.

And Sabrina got to meet Elvis.

I still get flashes of I'm-not-doing-enough guilt; it comes with the job of being a special needs parent. There are still exercises that I dread, like getting Max to bite on a small rubber tube to loosen up his jaw before he eats so he can more easily chew. I do it as often as I can. Sometimes, I slack. Sometimes, Max refuses and I let it slide.

I do what I can.

But pinball therapy? Ah, there's a therapy we can all embrace.

Friday, April 26, 2013

Special Needs Blogger Weekend Link-Up: Post it!


Welcome to another Special Needs Blogger Weekend Link-Up, the next best thing to having a publicist.

The idea

Link to 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 Sexy And I Know It.

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, April 25, 2013

Free bikes and bike lessons for kids with special needs


AN AMAZING BIKE GIVEAWAY FOR KIDS WITH SPECIAL NEEDS

For the second year in a row, the Friendship Circle is hosting a Great Bike Giveaway for kids with special needs, and they've partnered with major adaptive bike companies. You choose which of the five bikes you'd like to enter to win for your child, from now through May 12, then get 50 friends and family members to nominate you. Five runner-ups will each receive a $500 Gift Registry from Tadpole Adaptive towards an adaptive bike. Awesome-ness!

BIKE LESSONS FOR KIDS WITH SPECIAL NEEDS

iCan Bike programs (formerly known as Lose The Training Wheels) are geared toward helping people with disabilities ages 8 and up learn to ride a two-wheeler. Kids can do bike camps, after-school programs and in-school programs around the U.S.

And in case you don't win a bike...
PROGRAMS THAT PROVIDE ADAPTIVE BIKES TO KIDS WITH SPECIAL NEEDS

National

Variety Kids on the Go! funds durable medical equipment for kids with physical challenges and financial need, including bikes along with wheelchairs, walkers, van lifts, house ramps, adaptive car seats and strollers. You apply through your local chapter of Variety The Children's Charity.

Athletes Helping Athletes has provided handcycles to more than 625 children with special needs since 2000; you can apply here.

By state

Connecticut 

The Freedom Program provides bikes to kids with special needs—145 to date!

Florida

Project Ride, through the Jewish Community Center in Boca Raton, Florida, gives new, modified adaptive bikes to kids ages 6 to 17.

Idaho

Bike For Kids is an Idaho fundraiser whose proceeds go toward providing adaptive bikes to kids with special needs; contact info for applying for a bike is here

Michigan

On Bike Day at Beaumont Children's Hospital in Michigan, 50 kids with special needs get custom-adapted bikes. 

Pennsylvania

The My Bike program by Variety the Children's Charity provides adaptive bikes to children with disabilities who live in the Southwest, Pennsylvania region.

GOOD ADAPTIVE BIKES FOR KIDS WITH SPECIAL NEEDS

For an outstanding list, see 20 Bikes, Trikes and Tandems For Children With Special Needs.

Wednesday, April 24, 2013

Grief, life, love, hope, healing, special powers, blessings, rainbows and gratitude


Grief

A visitation for family and friends and funeral mass for Gavin took place yesterday morning at the church were he was baptized and Kate and Ed got married. Gavin: age 5 1/2, a kid with a saintly smile who'd just started walking and had beaten many odds. Kate: a beautiful person and stellar mom contending with the unimaginable.

I stood in the church's lobby and pored over the many keepsakes and photo boards set out on tables, Kate's labor of love. Gavin giggling, playing in water, doing therapy, loving his family, looking so handsome, being a kid. His birth announcement. The paper Valentine's heart he made. I tried to compose myself, went into the chapel, stood on the receiving line, gave Ed a hug hello, hugged Kate, hugged her some more, sat down in an empty row, wept.

Life

I spotted Miss Sara, Gavin's amazing aide, and Gavin's little brother and walked over. After Sara and I hugged, I stooped down to chat with Brian who was munching on organic bunny fruit snacks. We got to talking about his love for Angry Birds Star Wars, which I hadn't even known was A Thing. "Have you seen the Stars Wars movies yet, or are you too little?" I asked. "No, I'm too big!" he told me. I laughed. We high-fived. He gave me the empty bunny snack wrapper.

Love, hope, healing

Kate wrote an absolutely beautiful eulogy and read it with quiet strength, barely faltering. She acknowledged the sadness in the room, then said, "Ed and I feel strongly that we want people to leave here feeling mostly inspired....by Gavin and his journey. If we've ever been sure of anything, it is this: Gavin was sent here on this Earth to work through us to inspire others. To change people. To open people's hearts to endless possibilities. To inspire hope and healing."

Kate noted that she was aware that many people have been inspired to do wonderful acts to honor Gavin. "If people all over the world are feeling even a fraction of what we have felt over these 5 1/2 years as Gavin's Mommy and Daddy—inspired, lucky, blessed, hopeful—then my heart is full," she said. "Gavin is continuing to change people. Help people. Heal people's hearts...including ours."

Special powers

Miss Sara read a favorite book of Kate and Gavin's, On The Night You Were Born.

Gavin, on the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered
"Life will never be the same."
Because there had never been anyone like you...
ever in the world.
•••••
For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again.

Blessings

Ed wrote a homily, Prayers of the Faithful.

He asked that God provide people suffering injustice and tragic events, like those recently in Boston, with mercy and comfort.

He asked that God bless the teachers and therapists who care for and nurture our children.

He asked that God give hope to those who have recently lost a loved one or who are praying for organ donations for loved ones.

And he asked,

For all our children, that our love for them may keep the safe throughout their life on earth, and that God grant them eternal peace and happiness when they are with Him.

Rainbows

"People are fascinated with rainbows," said Father Kelly. He spoke of the first mention of rainbows in the bible, in Genesis:9. He spoke of classical composer Frédéric Chopin and his Fantaisie-Impromptu, part of whose melody is in the song "I'm Always Chasing Rainbows." He spoke of Judy Garland singing about rainbows. And he spoke of Kate's blog, Chasing Rainbows, and how she's shared so much there, and inspired so many.

Gratitude

Every one of Gavin's therapists and teachers, from birth on, came to the service, except for a nurse who was with a family in need. One of Gavin's former aides even flew in from Turkey. They participated in the Presentation of Gifts. One by one, each walked up to the podium and placed a stem of blue hydrangea in a clear glass vase. A sign below read "A superhero sleeps here."

Life

The final song of the service was You Are Mine, by David Haas. The last lines rang in my ears the whole drive home:

I am the word that leads all to freedom
I am the peace the world cannot give
I will call your name, embracing all your pain
Stand up, now, walk and live.

Hope

More words from Kate's eulogy that I will never forget: "Never let anyone tell you that you can't chase rainbows," she said. "As I look out on this sea of faces, I know that each of you have been inspired by Gavin's story. Gavin, really, was everyone's child and I was happy to share him with all of you. But you can find hope and inspiration and important life lessons in your own lives. In your children's lives, young or old. In your journeys, even when the path seems impossible to walk, like this one for us. Everything is an opportunity to learn... to help others... to grow. Gavin taught me that. I am just the messenger today."

Tuesday, April 23, 2013

Remembering Gavin, today and forever


This morning, I'm driving to Pennsylvania for a memorial service and funeral for Gavin. I know many of you wanted to be there, and I will give Kate an extra hug for you. I've never been to anything like this so I'm not sure what to expect, other than that Kate put together beautiful photo boards of Gavin.

Kate being Kate, she wrote a post reassuring people who are attending that she realizes they might not know what to say, and said that is OK. She also gave us permission for not worrying about holding it together, which I was grateful to read because I do not think I'll be able to. I just don't want to sob in front of her, or do anything to add to her grief.

I've been thinking and thinking about what to wear. I'm not a person who devotes much brain power to outfits, but all black doesn't seem right for a child's funeral. I don't want to look morbid, for Kate's sake. So I'm mixing black and white. Kate also asked that people not wear perfume, cologne or anything scented as they used to trigger skin flare-ups for Gavin; she thought that a whiff could make memories come flooding back of protecting Gavin. So I'm borrowing Dave's unscented deodorant. I'm a big ball of nerves, sadness and pain for Kate.

I desperately wanted to bring something. Last week I got in touch with Melanie, Daniel's mom, from Better Than Normal. Melanie makes the most amazing crowns and capes for kids at her online shop Let 'em Be Little. I thought of Superhero Gavin's effect on people, and asked her to make him this Super G.

Kate's requested that donations in lieu of flowers be made to the following non-profits:

The Child Life Program at Nemours/Alfred I duPont Hospital for Children. If you did not read Kate's post about how it helped her younger son, check it out, and see the specifics of where to donate.

Gift of Life Family House, which provides support programs and temporary lodging for organ transplant patients and their families.

CaringBridge, a free site for people to create personal pages where they can update friends and family on health issues. Kate originally started writing about Gavin there.

So many people have honored Kate's birthday wish to do someone good; today would be a great day to  fulfill that wish, then share it on her Facebook page.

Monday, April 22, 2013

A great new way to describe kids with special needs


Saturday, Max and I raided the library for books about cars, took a walk in the park and had lunch at his favorite Italian place. The meal morphed into something truly amazing.

Max got ziti with butter, every last inch covered in ketchup, and after a brief stand-off in which he tried to get me to feed him (I refused, unlike some other parents I know named Dave) he chowed down with gusto. "Hi, Ellen!" I heard. I looked up; a nice woman I know from around town had sat down at the next table with her son. A. is 12, and has never met Max. We all talked as Max concentrated on eating; he stopped chewing only to say "I'm Max!"

When Max finished, he told me a few things, including that he wanted to go check out the train station afterward.

"Why's he mumbling like that?" A. asked.

I do not mind questions like these, not at all, especially because fielding them is far better than noticing the kids who just blatantly stare at Max, as a couple did when we walked into the restaurant.

"He has cerebral palsy," I explained, "and that means your muscles don't always do what your brain wants them to do. Your tongue is a major muscle, so he has issues with moving it and that's why his speech sounds like that."

A. paused. "Ohhhhh," he said. "He has rebel muscles!"

I smiled. "That is the best description of cerebral palsy I have ever heard!" I told him.

Max hadn't been listening, so I filled him in. "Max, I told him you have cerebral palsy," I said, "and he said you have rebel muscles!"

Max seemed to like that, too.

So often our kids' challenges are described in terms of impairment (disability, special needs), words that encompass their entire beings. But "rebel" makes it clear it's just a part of them that's acting up. It doesn't let their challenges define who they are.

A child with Down syndrome has a rebel chromosome.

A child with autism has rebel senses.

A child with a genetic condition has rebel genes.

A child with hearing issues has rebel ears.

A child with vision issues has rebel eyes.

A child with developmental delays has rebel timing.

Yeah.

Friday, April 19, 2013

Blogger Weekend Link-Up: In Honor Of Gavin Leong


This is a special edition of the Blogger Weekend Link-Up, for my friend Kate. Last week she lost her beautiful son Gavin, a five-year-old with cerebral palsy and many special powers. The outpouring of prayers, love and support on her blog, Chasing Rainbows, and Facebook page has been remarkable.

Kate was asking me about posts that have been written about Gavin; she knows there are many. It will be really helpful for her to have a list of them assembled in one spot. So please, if you've written a post about Gavin and Kate, link it here. If you've read a post about Gavin and Kate, link it here.

This link-up is only for posts about Kate and Gavin.

What to do

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

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

Click "Enter," leave a comment if you want to say more, then go read some powerful posts.

What else to do

Keep honoring Gavin with Kate's pay-it-forward birthday wish for people to do a good deed for someone, and share it on her Facebook page.

Thursday, April 18, 2013

How to ace an IEP: Tips from a parent pro


Max's annual IEP (Individualized Education Program, for the uninitiated) meeting happened yesterday. It's our seventh one, which I guess makes me a veteran, though a very young-looking one. I took the day off from work, not because it takes so long (about an hour and a half) but because I always have a lot to process afterward. These are some of the tactics that have helped me get the most out of IEPs over the years, and helped me to best help Max

Try to discuss goals ahead of time with the team
Max's teacher and therapists have emailed in recent weeks to share their thoughts on goals for Max, and find out what mine were. It is incredibly helpful walking into the IEP knowing them, and being prepared to discuss them. If you have assessments from experts, share them ahead of time, especially if you're going to pushing for additional therapies or other support. You can also request a draft of the IEP ahead of time; it's a good thing to do if you have concerns and you want a specialist to weigh in on it.

Make a list
Basic, yes, but key: Bring a list of questions. I type mine out so they're easy to read at a glance and because it looks I-mean-business official. My wish list is also on that paper—an extra session of occupational therapy, a way for Max to do homework on his iPad or computer.  

Sneak a peek at your kid before the meeting
When I popped into Max's classroom, I got one of his I'm-so-happy-all-I-can-do-is-giggle reactions, just the fuel I needed to go on. Also: During the conference, I opened a photo of Max on my iPhone, and left it facing up on the table. Just in case, you know, I forgot why I was there...or anyone did.

Bring backup
And by this I do not mean a flask of mojitos, not that there's anything wrong with that. Say you want the district to pay for a speech app for your child. Gather your ammo, whether it's copies of letters from private speech therapists or the neurologist or copies of progress reports from the last two years that show your child hasn't made great progress in communication. Discuss your request ahead of time with your district coordinator so she can (hopefully) back you up at the meeting. If you know you are going to be in for a battle over a device, service or support you want, you have a right to bring an advocate, psychologist, behaviorist, attorney, psychic. And if you do not agree with the IEP, you do not have to sign it right then and there. Truth is, sometimes administrators don't necessarily have your child's best interests in mind—they might have the budget's best interests in mind, something I learned the hard way years ago at another school when I first asked about getting Max a communication device and was told "no." If you choose, you can put your concerns in writing and request another IEP meeting. Also: If you've had clashes with your school over services, you have a right to record the IEP meeting if you give 24 hours notice; that tape could come in handy should the school not completely follow the IEP.

But keep an open mind 
Max has come a ways in terms of using both hands (his left one is the stronger one); he's instinctively picking up toys and objects with both of them and I no longer endlessly plead "Use both hands, Max! Use both hands!" But Max completely lacks supination—the ability to turn your arms so they face wrist-sides up (think soup-ination, like you're holding a bowl of soup). I don't know when this will kick in. Max receives two sessions a week of OT at school, and I got it into my head that an additional group session would be good for him; he's so social, and I figured watching other kids using their hands and arms in therapy might encourage him. What went down at the meeting: The head of the OT department explained that he does basically get group OT when the OTs are in the classrooms. Another pointed out that it wouldn't be great to pull him out of class for yet another therapy session. I listened, truly listened, and ultimately agreed with them. 

Feel the love  
During the meeting I'll look around the room and think about what each person has contributed to Max's progress; it makes me feel good, and helps lighten the intensity of what we're doing. And if someone's making me anxious, I picture them in their underwear! OK, I don't really. I just get them in a headlock. 

Anticipate the downer moments
There was lots of Good Stuff to talk about. I had to restrain myself from giving a standing ovation when the nurse announced "Max is potty-trained!" Math skills are coming along. Max is reading sentences, and typing them out on his iPad. He is increasingly using his iPad in conversation to ask questions, including ones like "What is your favorite kind of party?" (Which evidently stumped the guy who recently measured Max for foot braces; Max's answer is "Cars 2 party!" and when he gets around to asking me I will unhesitatingly respond "toga party!") But then we discussed Max and his understanding of time and money. And his wonderful teacher gently said she's not sure he is truly getting what they mean. Even though hearing her acknowledge that was hard, I'd figured it would come up and that helped temper the sadness. Max learns best from repetition, so we agreed Dave and I need to work more on helping him with those concepts at home. Heck, we don't even own an analog clock; one old-fashioned, non-digital Cars 2 clock, coming up.

Follow up
It's too easy to go home and get sucked into your bazillion to-dos. But take a moment to make a list of things you need to follow up on. Mine included talking more with Max's OT about a solution to helping him pull up his pants when he uses the bathroom, and being in touch with the school in September about getting Max a laptop with a touch-screen to do homework that way. 

I put all the paperwork aside until the next day, so I could read it with a clear head. Then I went and got myself an IP: Individualized Pedicure, my reward for surviving yet another IEP.  

Wednesday, April 17, 2013

3 ways to calm a distressed mind


I go on an organizing binge

I've been de-cluttering for days, an organizing frenzy unseen in our house since my dad died two years ago. I started with the kitchen junk drawer, which has been a black hole since we moved into our house. I'm not sure why I've held on to 23 key chains and dozens of green twisty ties, but now they're gone. Then I moved on to our coat closet, where I unearthed a sweater Sabrina hadn't worn since she was 3 and one of Max's baby blankets. Last up: The towering pile in our attic of the kids' artwork. I saved a bunch of it. I (GASP) tossed some.

Organizing gives me a sense of control when life feels unsteady, as it has since Gavin passed and Monday's Boston Marathon bombing. The zen of focusing on putting things in their place is calming, the act of donating stuff or tossing it into the trash cathartic, the thrill of seeing a clean space hope-renewing. Being offline and quiet is also a time to process things. Weirdly, I rarely sit around and just think. Or maybe that's every mother.

I go for a drive

"Dave, I'm going out, keep an eye on the kids," I'll say. Without waiting for him to respond, I grab the car keys and flee. Car therapy first started after I had Max. He was a fussy baby, and sometimes the only way to lull him to sleep was to drive around. I'd wander through the roads of suburbia as he dozed and weep about what had happened to him, pulling over if I cried too hard. Today, cruising around still soothes me. I put on a jazz station and find a nice neighborhood to roam. And cry a bit. And try to avoid passing by the ice-cream store, but resistance is futile and I'll have one scoop in a sugar cone, please. Butter-pecan therapy works, too.

I call an old friend

I hardly ever have long phone conversations with friends anymore. Either I'm at work, I'm doing something with the kids or I'm zoning out on the couch, my brain capable only of watching Love It or List It. But last night, I longed for the comfort of an old friend. J is one of my freshman college roommates; we haven't connected since Superstorm Sandy, and even then it was by text, to make sure the other was OK. And so, I call. J's been following what happened to Gavin, and we speak some about that. We talk about her life as a speech therapist in a public school (yes, one of my bff's is an SLP), her boys, Max's progress, our husbands, a sleepover in June and blueberry picking. We talk for two hours. And when I hang up, I feel better.

Image: Flickr/gnarburger

Tuesday, April 16, 2013

The gift of everyday gratitude: On counting your blessings, even as your heart is breaking


Sunday afternoon, the kids were on my last nerve. We'd taken a little road trip and en route home, the two of them fought mightily. Sabrina kept putting her bare feet in Max's face and saying "Smell my stinky feet!" Max would screech and grab Sabrina's hair, and then she'd wail. At one point, Sabrina announced she was doing yoga to tune Max out except her meditative chant consisted of "Max isn't going to have a Cars 2 birthday party!" which only made Max rage more.

I asked/begged them to stop. Finally, I turned around in my car seat and hissed, "I can't wait to get home and be away from you!"

I instantly felt awful. How could I say such a thing? Kate had just lost her little boy. I still had my kids. I needed to appreciate them more, even if they were acting out. I needed to thank God for their very existence. And then, another wave of guilt hit me: How could I selfishly be thinking about how lucky I was to have my children when Kate was going through hell and Gavin was gone?

As I've tried to process Gavin's passing, a thought keeps occurring to me, as I know it has for other parents: We do not sufficiently appreciate this life that we have. When I lay in bed Friday night next to the kids and I kissed them as they slept and breathed them in and dripped tears onto them, I wondered why it often takes tragedy to make us reflect on our blessings.

It's human nature, I tell myself. Today, in the wake of the Boston Marathon bombings, surely many people are holding their loved ones more closely.

It's crappy, I myself. It isn't right to feel a big rush of love for your kids because a child has died.

It's human nature, I remind myself. And so it goes.

I know what Kate would say: Of course you should go love on Max and Sabrina. Don't feel badly about that.

The truth I've had to face is this: I do not feel enough gratitude for my family. Most days, I am not marveling over their existence. No, more likely I'm wondering how I'll get through everything I have to do for them, be a good-enough mom and hold it all together. I get sucked into daily drudgery, appreciative only when I cross off another task on the to-do list.

Yes, of course, I think my kids are super-cute, delicious and all sorts of fascinating. I'm in awe of their smarts and achievements. I get a happiness high when Max makes progress of any kind. I have been known to lean over registers at the supermarket and Target and show the cashier photos of the kids I carry in my wallet.

But ordinarily, I take the kids for granted. I dash out the door in the morning to make the train to work after giving them quick pecks on their cheeks, unconsciously assuming that they will be waiting there for me when I arrive home. The weekdays and weekends pass quickly, a blur of activities, schoolwork, bath time, bedtime.

And when the emotional wear and tear of raising a kid with special needs gets to me, well, let's just say I'm not giving God a big high-five. There have been times when I am decidedly ungrateful for the hardships I've encountered along this journey, ones that now seem so relatively small.

Gavin's passing has made me grapple with another hard truth, and that is the medical fragility of our kids. Max had a stroke at birth due, in part, to two blood-clotting mutations. I don't think about it that much anymore, except in recent days: What if Max suddenly had another stroke? I've wondered. What if he were suddenly gone? Which has only made me feel nauseous and kiss him more. And think about Kate having to say goodbye to Gavin forever and heave sobs and get angry about the unfairness of it all.

As I grieve for Gavin, this gratefulness I've felt for my children has weighed heavily on me. My gut is saying I need to accept and embrace it as yet another gift from Gavin, this reminder to flex my gratitude muscle more regularly. Take a few moments from life's hustle and bustle to ponder the miracle of my kids, appreciate them, savor them. Maybe even when they fight, a whole new perspective on sibling drama. Thank God to have them every day. And thank Superhero Gavin for showing me the way.

Monday, April 15, 2013

For the love of a child who's gone—but who will keep on changing the world


God, it is said, works in mysterious ways. People, less so: When a child dies, we grieve deeply. We feel pain for the parents. We want to do something.

Kate's son, Gavin, has passed. It happened shockingly quickly; last week, he was a five-year-old boy with special powers who had just started dancing. On Wednesday he stopped breathing and went into cardiac arrest. On Friday Kate and her husband, Ed, made the decision to donate his organs. Last night, he was officially pronounced dead.

All weekend, I felt like I was moving in slow-mo. Kate is a vital part of my Sisterhood of Special Needs Parents. Gavin was a kid with special needs who kicked major butt. This is a child who'd gotten so much love, therapy, attention, everything. His mom is one of the very wonderful people of this world. Why, why, WHY?  

Kate has written about being comforted by the many thoughts and prayers streaming her way. Hearing about the impact Gavin has had also helps, she's said: "Gavin healed people. He helped people. We loved to call him our little 'Buddha Baby' for how he changed people with his quiet presence. Sharing parts of him is like spreading good karma and knowing that he can continue to help and heal people after his death is so very comforting to us."

And in another post she wrote: "People have been inspired by him over the years—and continue to be inspired by him now—and I know in my heart that, even in his death, that won't change."

This boy Gavin-ized people.

I often saw Max in Gavin, especially in the determination he had to push past his challenges and the way he charmed others. When Gavin helped people better understand children with special needs, it lifted me. When Kate did alternative treatments for him, it made me think harder about what I could be doing for Max. I swear, every single time I looked at that child's smile I thought he had found the meaning of life, so content did he seem. In recent days, what I've witnessed has reignited spirituality I have not felt in a long time.

Kate being Kate, on Facebook yesterday—her 43rd birthday—she asked people to participate in a project of doing something to help someone, to share Gavin's story and to ask that person to pay it forward. She and Ed will soon be announcing where donations can be made in Gavin's honor.

Gavin will live on—not just by giving life with organ donation, but because of the good he'll continue to bring to the world and the indelible impact he's had on our spirits and souls.

If you'd like, share a message here about how Gavin touched or inspired you. I will print them and others from Facebook, collect them in some meaningful way and bring them to Kate.

Rest in peace, Superhero Gavin. Much strength and love to you, Kate and Ed.

Friday, April 12, 2013

Special Needs Blogger Weekend Link-Up


Welcome to another Special Needs Blogger Weekend Link-Up—just as fascinating as watching reality TV, if not more so. Does it get any more real than this?

The idea

Link to 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: Dear Daddy: Are You Ready For Mother's Day?

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, April 11, 2013

The power of pixels and prayers: For Gavin and Kate, with love


"Gavin went into cardiac arrest and is being choppered to DuPont. It's very grave. Please pray."

I was devastated to read Kate's Facebook update yesterday.

I have never met Kate in person. And yet, I know her. Mom to Gavin and Brian, she blogs at Chasing Rainbows; we've exchanged comments and emails for years. She is the one who let me know Duke University was doing stem cell infusions, where Max got his. Gavin's diagnosed with cerebral palsy, but Kate's never been totally convinced that's what he has. She's done everything within her powers to help him, from making special nutrition-packed purees to setting up a hyperbaric oxygen tent in her basement. Gavin, who's 5, recently started walking independently.

I know Kate. You do, too. Because she is any one of us, loving up her child, continuously finding new ways to help him and spreading the word about his greatness. And she does it with particular spirit and humor.

You know Gavin as well. He is one of ours, a child with a beautiful smile and fierce determination who doesn't know the meaning of "can't."

Yesterday, he stopped breathing and Kate rushed him to the ER. She shared an update a few hours later:

"Gavin is still very critical. He just crashed again and there are currently 8 people in the room. They may have to shock him soon if he doesn't come out of it. Please, please continue to pray. We have no idea if Gavin has brain function—that is the least of their concerns at the moment. Knowing you are all with us means so much to us. Please also pray for his little brother Brian."

And then, in the middle of the night, she posted about what was going on, Praying for a Miracle. Gavin went into cardiac arrest a second time, then a third. Doctors are not sure why a child would be having the abnormal heart rhythms that he is. They'll be running more tests.

As a community, we continuously draw courage and power from each other. Kate needs that strength right now, and the comfort of knowing we are thinking of her. Prayers have been pouring in through Facebook—which at times like these becomes Faithbook. Please, keep beaming prayers, thoughts and be-OK vibes at Gavin, along with ones for Kate and Brian.

We are with you, Kate, right here and in our hearts.

Wednesday, April 10, 2013

Happiness is not a purple light-up toothbrush


I never realized the fate that would befall me when I tossed Max's Crayola light-up purple toothbrush the other week. He'd had strep, and I always get the kids new toothbrushes after they start antibiotics because those evil bacteria can live on the bristles. 

Off I went to CVS to pick up a new purple light-up toothbrush. Only there were none to be found in any color. Hmm, I thought: weird. I went to another drugstore. Nope. Then I hit another. Nada. 

Total time spent driving to drugstores and cruising toothbrush aisles: 50 minutes.

Max's wants in life are pretty simple (um, other than repeated requests for Disney Cruises). He likes: 1) Cars 2 merchandise and 2) Anything purple. At this point, the kid owns more Cars 2 stuff than I've seen in some Disney Store sections. And purple? Yeah, that too, even though I am so tired of that color and never really liked it and DID I JUST WRITE THAT? 

I called a friend to chat and ended up complaining to her about the lack of purple light-up toothbrushes. I bemoaned the fact that I'd never thought to hoard them.  

Total time spent complaining about my toothbrush quest: 7 minutes

Still: Getting Max a light-up purple toothbrush is one small thing I can do to make him happy. Besides, this light-up one has its charms. Max does not like having his teeth brushed—it's a whole lot of oral-motor stimulation and he's got mouth sensitivity, no matter how gentle I am. We're at the point where we stand in the dark, the bathroom lit up only by the blinks of the brush, and I sing "Happy Birthday to Max" as I clean his teeth. See: You Do What You've Gotta Do.

When I get home from my drugstore rounds, I hit Amazon. I always assume you can find everything on Amazon, and one of these days when we commit to having a third kid I will most likely first check Amazon's "baby" department to see if one is there. Sure enough, I find an actual purple Toothbrush with Flashing Timer on Amazon. At $2.19 plus $1.99 shipping, I purchase two. Just in case there's a run on them. I write on the gift card (the only place where you can write a message): "Please note, we need PURPLE."

Total time spent browsing Amazon and purchasing two purple light-up toothbrushes: 4 minutes

Meanwhile, I use a substitute purple brush that does not light up. Max isn't pleased. He still wants to brush his teeth in the dark, which is a little tricky and once I think I accidentally brushed his nostrils. 

The package arrives from Amazon. I eagerly rip it open to find...two red light-up toothbrushes. 

Surely this is karma coming back to bite me in the butt for all those times I told my mom I brushed my teeth as a kid, but didn't.

Later that night, I jump on Amazon chat with a customer service rep. I point out to Siobhan that the image on the page is of a purple toothbrush, and so that's what I was expecting. She apologizes, offers a credit, says she would be glad to place another order.

Me: "But can you guarantee that I will get a purple toothbrush?"
Siobhan: "There's a chance you might not get that color again."
Me: "OK, then no need to place another order because I don't need any other color."
Siobhan: "I'm sorry you didn't get what you wanted, have a blessed day."
Me: "Oh, Siobhan, you have NO idea the lengths I have gone to to get my child purple stuff."
Siobhan: [silence]

Amazon reps are probably trained not to respond to people who act as if they are going to commit hara-kiri for lack of a purple light-up toothbrush. 

Time spent with Amazon rep describing The Situation and ascertaining that it was not possible to guarantee me a purple light-up toothbrush: 6 minutes. 

I Google around. The Crayola site still features the toothbrushes, only when I type in my zip code for "Find A Store" I get 0 results. When I click "BuyAtCrayolaStore.com" I get an error message. And suddenly, I get the distinct feeling these may be discontinued.

Time spent Googling and then compulsively eating a sleeve of Girl Scout Samoa cookies from the stress of it all: 12 minutes. 

Eventually, I find a bunch on eBay, but only one purple one. The seller does have "99.9% positive feedback" so I feel confident I will get that color. But it will cost me $5.35, plus $1.69 in shipping. 

$7.04 for a toothbrush. 

Also: I have just spent 79 minutes of my life looking for a purple light-up toothbrush. Seventy-nine minutes that I will never have back. Seventy-nine minutes that I could have spent reading or doing housework or discussing Cars 2 or purple stuff with Max.

And suddenly, three words flash on in my head: GET A GRIP.

As much as I want to keep this child happy, one purple toothbrush isn't going to make a real difference. If I'm being honest with myself, this is as much about my burning desires to keep Max content and make up for all that he's dealt with in life as it is about his passion for purple. 

He can certainly learn to find contentment in a red light-up toothbrush.

And he has.

Tuesday, April 9, 2013

Lightning McQueen has cerebral palsy


"Max, do you know that you have cerebral palsy?"

It's twilight, my favorite time of day. I am lying next to Max in bed, and we are talking about important things—his next birthday party (which he started planning the day after the last one), summer vacation, his reluctance to return to school after spring break.

In recent months, Max has made all sorts of progress: potty training, handwriting letters, reading. At times, I can practically see his wheels spinning. Which for me has had the effect of making the elephant in the room, his cerebral palsy, even larger. I often wonder if Max understands what it is, or recognizes that he has special needs.

I have never had a full-blown discussion with him about the CP. Just little comments here and there like, "Max, that girl has cerebral palsy, like you do." I show him other blogs by parents of kids with CP. We've got a couple of books about characters and real-life kids who have CP, but he hasn't really been into them.

Sabrina knows that Max has cerebral palsy. Cognitively, I think, Max is able to understand. And I want him to own it. I'm not worried that it will make him doubt his abilities; Max only knows the word "can." When I watch him trying to keep up with other kids on the block, he just does his best. He's never put out that he can't pedal as fast. He's just happy to be cruising down the block on his bike.

And so, I ask: "Max, do you know that you have cerebral palsy?"

Max stares at me, sleepily. "Eeeyah!" he says. ["Yes!"]

And I go on, "Max, when you have cerebral palsy, it means your muscles don't always work the way you want them to. Like when it's hard to pick stuff up. But usually you figure out a way! Right?"

Max looks at me and sorts of nods. I'm not sure he's following.

"Max, does Sabrina have cerebral palsy?" I ask.

"Noooo," he says.

"Max, does C have cerebral palsy?" I ask [that's his best friend at school, who has Down syndrome].

"Noooo," he says.

"Max, does M have cerebral palsy?" I ask [that's another kid in his class, who does have CP].

Max doesn't answer.

And then, lightbulb! Lately, we've been putting Lightning McQueen to good use during speech therapy. Max doesn't like the oral-motor exercises, but he does worship at Lightning McQueen's altar. And so first the speech therapist does the exercises on Lightning's mouth before she does them on Max. Works like a charm.

"Max, does Lightning McQueen have cerebral palsy?" I ask, smiling.

"Eeeyah!" Max says, and he giggles.

This is just the start of many conversations, but I have my answer for now. Max is mature enough to get that he has cerebral palsy, and still young enough to think that Lightning McQueen can have it, too. And that's fine with me. Because if Max believes that super-cool Lightning McQueen has CP, then to him having CP must be utterly, perfectly OK.

Monday, April 8, 2013

The super-happy days of my life


My mom came to our house this weekend. She's getting older, and doesn't visit as much as she used to. My sister was here, too, with my cutie-pie niece.

The kids love it: Max has a special squeal for when Babba walks in the front door. Sabrina, who can be a bit blasé, gets very cuddly with her. Me? I just feel happy and...comforted. There is nothing like having my mommy around. And I do not feel the least bit too old to say that.

Nobody but my Mom asks me if I'd like a piece of fruit to eat (sure!) . Nobody but my mom asks if I'm overly stressed and whether I need a break from work (nope). Nobody but Mom tells me my skin looks as good as it ever did. "Now what did Marilyn call it? Porcelain!" she'll say, and I'll beam. (For the record, her eyesight is perfectly fine.) Nobody but Mom says "Do you have enough Tampax? Would you like me to buy you some? They are on sale this week!" I mean, who in the world cares enough about me to ask that? Mom.

Whenever she comes over, she usually brings some sort of memorabilia. This time, she had a birthday card I sent her in my early 20s whose cover said, "Mom, do you remember when I was a kid and I listened to you all the time?" And when you opened it the inside read, "Me, either." And we both cackled. 

My mom waters my plants. She cleans up the crumbs on the kitchen counter. She watches HGTV with me and marvels over the home renovations. She sits and gazes at me adoringly and tells me how awesome the kids are.

She sprinkles her magic Babba dust all over our house, and I am under her spell. And suddenly, I am a kid again without a care in the world.

Friday, April 5, 2013

Special Needs Blogger Weekend Link-Up: Share, Like Yo Momma Said


Welcome to another Special Needs Blogger Weekend Link-Up, where it's considered not just polite but awesome to share.

The idea

Link to 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: Should I Change 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, April 4, 2013

Dance party around the world: A cool activity to do with the kids

We have a new Sunday night tradition at our house: Dance Party Around The World. It helps shake off the Monday back-to-school blues, and it's a whole lot of fun. We start off dancing in Max's room (Cars 2 soundtrack), head over to Sabrina's abode (Katy Perry song), next my room (Springsteen!), then back to Max's room (Cars 2).

Yes, Max's serial casts are off! Five weeks did the trick of straightening out both feet. And now, he has his groove back. Pay close attention and you'll spot Max doing what Dave calls his "surfer dude" move. You do not need to pay close attention to see Sabrina hamming it up.

I love dancing and I don't get to do much of it anymore, so this is super-fun for me, too. (My dance moves: not caught on film.)

 

Wednesday, April 3, 2013

More fun museum visits for kids with special needs

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!

Visiting children's museums with Max is fun—once he pushes past his fears. He is usually wary of walking inside and once we've coaxed him in, it takes him awhile to get comfortable. But I am newly revved to go to one because I've met a museum fairy godmother: Nora Moynihan, Director of Education and Community Enrichment at Port Discovery Children's Museum in Baltimore. 

Port Discovery is a member of the Association of Children's Museums, one of 66 organizations recently awarded grants by the CVS Caremark Charitable Trust. The museum's also a partner of PACT: Helping Children with Special Needs. Nora's been at Port Discovery for nearly twenty years; she has a BS and MS in Early Childhood Education, and she had some game-changing tips. 

Go during quiet times.

"Weekday afternoons and specially designed days to limit attendance are good times to visit. Some museums now have designated days for children with special needs. Port Discovery offers Discovery Days, with lights and exhibit sounds lowered, group bookings just for special needs groups, and other visitors asked to engage in quieter, calmer play. Weekends, school breaks and holidays tend to be the most crowded times—mornings in particular, when there are school trips or camp groups."

Check the website for info.
"Sites often have a section with tips for your visit which can contain information about amenities for children with differing abilities, programs for kids with special needs and other helpful information."

Prepare your child for the visit.
"It is particularly important for children with specialized needs to be prepared for new environments because oftentimes these environments cannot be controlled—there may be loud sounds, flashing lights and other things that may cause children discomfort. Some museum sites have scripted stories parents and children can use to prepare for the visit, with photos and descriptions of what children can expect to see. Port Discovery has downloadable Scripted Stories PDFs for exhibits including Tiny's Diner and Wonders of Water. If a museum does not have a scripted story, you can create your own with photos from online."

Talk about potential challenges.
"Letting a child know about things that may be uncomfortable is as important as how the trip itself is facilitated. For instance, you can say to the child who is afraid of noise: 'You might hear announcements over the loudspeaker when you are not expecting them. You will not be hurt—these are just to let everyone know when shows are happening.' If a child says they are not ready to try something—like going down the slide or touching animals—that is OK and maybe next time they will feel ready. I do however, recommend trying to observe—for a moment—the activity making them uncomfortable so they can see what it entails. No pushing or convincing is necessary, just a quiet observation. With this in mind, if a child is so terrified by something I do not recommend pushing the point: enrichment activities are supposed to be just that, enriching! I am very afraid of ziplines; no matter how many times I see them they still make me uncomfortable and no amount of looking is going to make me change my mind.  Often times we have to come to things on our own and sometimes never.  My life has been very rich without ziplines!"

Start at an area in the museum that relates to your child's interests.
"I always believe in offering kids of all abilities a taste of what they love/want first, something familiar to establish a point of reference and then bring them into the unknown. If they have a positive experience first they are willing to step out of comfortable confines and try something different. Children’s museums are known for having beautiful sensory areas such as water and sand play, arts and crafts to climbing exhibits. If your child enjoys water, spend time in that area and stay as long as your child wants. They are very capable of telling us what they need and want through their actions!"

Let kids linger.
"If a particular activity has your child actively engaged and he is enjoying the experience, let him stay in the area as long as they want. It’s not about quantity of activities—it is about quality of time with those activities."

Have a nice lunch.
"Most museums have a dining area, some with a child-friendly café. In my experience the happiest visitors are the ones who pack their children’s lunches and snacks—that way they're assured of having exactly what they need or want. Also: no long waits in line! For guests on vacation who cannot prepare ahead of time, it is best to do a little research before going: Does the museum have a restaurant? What eating establishments are nearby that may be more appropriate for their family? Also, often eating areas in museums are open spaces, like a lunchroom, which can be distracting, loud and encourage running away from caregivers. For those who’s children need to have a quieter or more confined seating environment like a booth, it is best to plan ahead and look for resources in or near the venue. Call the museum and ask!"

Be a regular!
"If you find a particular cultural institution to be of great interest to your child then a family membership might be a nice buy. Oftentimes if children have short attention spans or tire easily, it will be difficult to see everything in one visit. A family membership makes repeat visits very economical and often they have reciprocal benefits with other places. In the children’s museum world, we want kids to grow up with us—so we want to see families often!"

You can always call.
"Each museum functions differently. However if you ask for someone in the education or guest services offices, they should be poised to answer questions. You will find staff at the other end of the phone or e-mail very helpful and friendly. If you did not find certain information online—say, like where challenging spots such as noises or flashing lights might be—they can fill you in. And if they do not have an answer they will get you to the right person who does. In children’s museums our work is children’s play and we take it very seriously!"

Review the trip.
"After your visit, talk with your child. What did she like? What was hard for her? What do they want to remember  for the next time? One follow-up activity can be to create something about the memory of the trip—either place photographs of the trip in an album or make a collage and attach their words to the pictures. These can be used for planning and preparing the next visit."

Photo: Courtesy of Port Discovery 

Tuesday, April 2, 2013

Does he have autism?


"If you don't mind my asking, does he have autism?" people will say, looking at Max—if we're at a mall in a play area, if we're at a party and mingling with new people. "He has cerebral palsy, but he can definitely pass for a kid with autism!" I'll answer. "Thing is, you can't tell much just by looking."

People regularly assume that Max has autism because 1) He wears noise-blocking headphones 2) He has communication issues 3) He tends to obsess over certain things (purple, the movie Cars 2, purple, the movie Cars 2, purple...).

Whenever this happens, it makes me very aware of the stereotypes about children with autism. Max happens to fit some of them. If he were in a wheelchair, people would more readily realize he had cerebral palsy because that's a stereotype of having CP.

I totally get why people want to label Max. It makes them feel more comfortable to have a handle on what's up with him; there's a pervasive discomfort in our society with those who are different. I am not blaming, not at all—until I had a kid with special needs, I only felt pity for them.

But here's the thing about labels: They whitewash the uniqueness of the child. When people figure that Max has autism because he looks or acts a certain way, or when people think that kids with autism are like Dustin Hoffman in Rain Man, they presume to know what our children are like—which does our kids a major disservice. That's where we, their parents, come in. 

Today is World Autism Awareness Day, dedicated to raising awareness and funding. The disorder has become increasingly prevalent—1 in every 50 kids has an autism spectrum disorder, according to the latest stats released by the Centers for Disease Control. (In case you're wondering, approximately 1 in 303 kids in the U.S. has cerebral palsy, and one in every 691 babies is born with Down syndrome.) A sea of blue will wash over the world: The Empire State Building, the Sydney Opera House and the Pyramids of Giza will all be bathed in blue light (Everyone Matters posted an awesome 2012 compilation video on Facebook). Homes and stores will shine blue. World Autism Awareness Day flags will fly.

Even as parents out there open people's eyes and hold fundraisers throughout the month, there's one key part of awareness all of us can promote, throughout the year: Help people understand that kids with special needs are distinct individuals with definitive preferences, likes and dislikes. You know, like any kids. Help dismantle the stereotypes that accompany the labels. Help people see the ability in disability. 

Our kids may have autism, cerebral palsy or any number of other diagnoses. But ultimately, their special needs do not define who they are. Our kids kick butt. And, as their mamas, so do we. Let's keep right on spreading the word, today and every day.


Image: Flickr/techfun