Monday, October 31, 2011

The gift of Max: how my child changed my perspective on disabilities


Dave and I are walking into a local diner to grab a bite; our babysitter is staying late, and we're enjoying a rare weekday night out.

"Hello! It's cold outside, isn't it?" says a man standing by the front door. He's a tall, portly guy with a friendly smile.

"Yes," I agree, "it is."

Dave and I sit down at a table.

"That's a good table!" the man says. "Yes!" I respond, smiling back at him.

Dave and I get the menus, order dinner, talk. The man is by the countertop now, speaking to the waitresses about the weather. He says goodbye to them and then he stops by our table.

"It's getting chilly outside," he says to me.

"Yes, it really is," I say.

"But we had some beautiful days in October!" he says.

"That we did," I say.

"October is my favorite month," he tells me. "Also, June, July, August and September. And October."

"Those are good months!" I say. "September and October are my favorites."

"It never sleets in September," he says.

"No, but it just might in October—I heard it's going to get very cold," I say.

"November is usually cold and December is even colder and January is colder," he tells me.

We keep talking for a minute or two about the weather. Everyone at the tables around us, mostly older guys sitting alone, are looking down or away, anywhere but at us.

The man tells me goodbye, starts walking to the door, turns and comes back.

"I'm sorry for talking with you," he says.

"Please don't be sorry!" I tell him. "We like to meet new people!"

"OK!" he says.

He heads to the door, turns and comes back.

"That's good that you like to meet new people," he says.

"We do," Dave tells him.

And then he leaves.

The waitress stops by with our salads. She knows our family, knows that we have a kid with special powers. "He's a great guy," I tell her. "Is he a regular?"

"Yes," she says, "Elliot has been coming here for years. He's awesome."

And then, I can't help it: I want to know about him. Whenever I see adults with disabilities, I am overly curious about their lives; someday Max will be one of them, and I am inspired by adults who are independent. So I ask: Does he drive himself around? Does he live alone or in a home? Where does he work?

He drives, she tells us; he lives by himself, he works as a teacher's assistant at a school, he has autism.

As Dave and I eat, we talk about Elliot and how great it is that he is so self-sufficient. But something is bothering me. Really, really bothering me. Finally, I speak up.

"If we didn't have Max," I say, slowly, "how do you think we would have acted with that guy?"

Dave looks at me. "We probably would have been less open to speaking with him," he admits.

And that is exactly what is bugging me. I was glad, genuinely glad, to make conversation with Elliot. But if I didn't have a kid with special needs, I most likely would have been wary. Not unfriendly, because I'm friendly to everyone, but more hesitant to engage in conversation. I might have considered him "odd." And it's disturbing to think of how close-minded I might have been if I didn't have Max.

My friend Hallie recently shared a story on my Parents.com blog about standing up to a teen who used the word "retard." In her post, she admitted that she and her husband freely used the word before they had a child with Down syndrome. She got a few sharp comments from people who wondered how she could be so "righteous" and "hypocritical" about the word "retard," given that she herself used to use it.

Hallie was being very candid. It took having a child with special needs to change her view of people with special needs, and how they are treated. Same goes for me and many other parents of kids with special needs, I am sure...even if it's hard to admit.

What scares me is that these are the perspectives Max will face for the rest of his life. So many people out there don't know what I now do: That kids and adults with disabilities aren't to be pitied. Their personalities are not defined by their disabilities. They may speak, move and act in a unique way but they are more similar to others than they are different. Their lives can be as good as anyone's. And, really, what is typical, anyway?

Thanks to Max, I've met wonderful kids and adults I might have never met, or been hesitant to meet. I've come to understand and embrace a world I might have never known. My mind has been opened and enhanced.

That is the gift of Max...just one of many.

Saturday, October 29, 2011

It's my third blogoversary, and all I got was this lousy snowstorm


In honor of my third blogoversary, I got me a snowstorm! It's beautiful here but a little scary—tree limbs are coming down everywhere because of the combined weight of the leaves and the snow. Every so often you hear a "craaaaaaack" sound, and then you see another branch fall. I lived dangerously and went outside with my Pen E-PM1 camera.




It's nice to be stuck inside. We're going to do an art project and roast pumpkin seeds. Max is playing with his new app toy, Spin Art; not only is it very cool, it's motivating him to use his finger to "spin" a design. He is dressed in his Lightning McQueen costume. Thursday his school had a Halloween event and he has not taken it off since then. Yes, he slept in it.


This being my blogoversary, I wanted to say thanks to all of you for your company here. It wouldn't be a blog, a conversation or a community without you.

xo

Ellen

Friday, October 28, 2011

Want your kid to test a toy for a holiday guide?


I'm planning on putting together another toy guide for kids with special needs, and I'm looking for kids to test out toys, crafts, scooters. (Sorry, this isn't for cats; I just couldn't resist that photo).

If you're interested in having your child try out a toy, leave your email below and I'll send you a form to fill in. (If you aren't comfortable leaving your email here, then just get in touch with me at lovethatmax@gmail.com.) This is going to be a first come, first serve basis and will also be based on matching up available toys to kids' needs; it is for U.S. residents only.

Once I've got a group of testers, I'll have the company send each of you the item to test. You will be responsible for having your child try it within a week or so of receiving it, emailing me about your experiences (I'll send you questions to answer) and (if possible) sending a photo of your child playing with the toy. The toy is yours to keep.

Also! If you have recommendations for toys your kids love that have helped them developmentally, in some way, please email lovethatmax@gmail.com and let me know why the toy rocks. And why your kid rocks, too, because that I always love to hear.

UPDATE: The call for testers is now closed; thank you all for signing up! If you are chosen to be a tester, you will receive an email from me within the next two weeks. Unfortunately, I will not be able to include everyone as there are more testers than there are toys. But there will be gift card giveaways along with the gift guide.


Photo/PeoplePets

Thursday, October 27, 2011

Top Special Needs Mom fantasies


* How awesome would it be if we had a physical/occupational/speech therapist who lived with us?

* A nap. I want a nap.

* Wouldn't it be amazing if he woke up tomorrow and just did that?

* That pediatric neurologist/pediatric orthopedist/pediatric ophthalmologist/developmental pediatrician sure is sexy.

* "Have you heard? We've done away with IEPs! Just let us know what your child needs and we'll take care of it, no problem."

* How cool: an app that dresses and feeds kids! And books all their doctor/therapy appointments!

* Well, if I won the lottery, we could have a therapist move in with us.

* "CNN Special Report: A new study finds that having a child with special needs makes you look 10 years younger"

* Yes, of course, my child would be happy to play with your child. Let me just see when we can squeeze in a playdate, he's so overbooked.

* And, yes, my child is thrilled to be Time Magazine's Person of the Year.

* George Clooney has decided to become a pediatric neurologist? Woo hoo!

* "Sorry, insurance company claims person, your claim to enter heaven is denied; purgatory is right this way."

Wednesday, October 26, 2011

Objects of affection: the stuff Max won't leave home without


Max never had a blankie when he was little, or a stuffed animal he particularly adored, or any of those comfort objects tots cling to. This used to worry me; I wasn't sure what it indicated, but I thought it was troublesome. Back then, I used to see so many things as signs that something wasn't right. Poor Max could have burped and I would have been concerned.

It was the anxiety about the effects of his stroke, and the doctors who'd made me think that so much was going to be "wrong" with him. It took me a long time to look for what was right—and there was much of that. It took me even longer to stop looking for "wrong" and "right" and just accept Max as he was.

These days, Max is making up for lost time in the comfort object department. Most recently, he has been going everywhere with a purple Halloween pail. He "borrowed" it from my friend's kid last year, then pulled it out a few weeks ago. It comes out with us a lot.

The purple pail, though, pales in comparison to Max's other current object of affection: a gigantic purple pasta bowl. We took the kids to one of those paint-your-own-pottery places a few weeks ago, and helped him paint an entire bowl in purple. Things got a little touchy because he only likes royal purple, and the paint went on too light for his taste even though it was going to turn royal purple in the kiln. He was dubious until the day we went to get the finished plate, and it was gloriously purple. It's sat on our table ever since. He doesn't want to eat out of it—nooooo, he just likes to gaze upon its purple glory.

Last Sunday, Max insisted on taking it everywhere. It rode around in the car with us, along with a white cup he had colored purple. When we took a hike, the cup and bowl accompanied us, too. Max wouldn't have it any other way.


I am sure hoping he gets past the purple bowl before winter vacation, when we will probably be flying somewhere.

What objects are your kids attached to these days?


Tuesday, October 25, 2011

My name is not Rio


Some days, I am hungry like the wolf to go back to that pre-parent period of my life, when I had time to go to concerts. Although I have never been a girl on film or experienced a union of the snake or had Big Hair of the above variety (nor have I ever been a man), I would like to know if there is anyone out there who feels the same? Please, please tell me now—is there something I should know?

OK, peoples: One guess as to which concert I am seeing tonight.

Ding-ding-ding! Yep, I've been gifted some Duran Duran tickets. (And if you said "Wham!" you sniffed way too much hairspray back in the day.) The group is on their All You Need Is Now North American tour through October. Tonight, Dave and I are going to the Madison Square Garden concert, and I am psyched.

The Notorious boys (the original ones)

Duran Duran is one of my all-time favorite groups from my teen years. They were MTV, back when MTV used to only run music videos (as in, when it used to be good). The group's 13th album, All You Need Is Now, came out last December. Check out the lead single: It's their original sound, the one that made them big. (Dave, stop reading now.) My Simon Le Bon crush has returned.

Dave and I have seen a few good concerts in recent years—The Who, The Dead, John Fogerty, Norah Jones—but we don't go to ones anywhere near as often as we used to. You can bet I'll be singing my head off tonight. (Don't say a prayer for me now, save it 'til the morning after.)

I must stop now or one of you might reflex me to death.

Got fond memories of Duran Duran? What music most reminds you of your teen years?


Monday, October 24, 2011

On the variety of joys your kids bring you


Like many people, I have a few dreams in life I have yet to fulfill, such as learning to speak French, playing violin, visiting the Fiji Islands and weighing 110 pounds. Someday, I might get around to them (although the weighing 110 pounds one isn't gonna happen unless carbs and cheese go out of business). These days, I'm living vicariously through Sabrina's violin playing.

She started a few months ago and with each screech-screech-screech she makes during practice, my heart soars. She has played violin for every person who stops by our house, except for the mailman. "Listen, Mommy!" she'll say, and she'll eek out Twinkle, Twinkle, Little Star. The only hazard so far has been that she practices rhythm by repeatedly chanting "El-e-va-tor op-e-ra-tor" and those words run through my mind at random times, like work meetings or as I'm trying to fall asleep.

Overall, her playing has brought me much bliss. It's made me realize the different kinds of joys you can get out of your children; this is the first time one of the kids is doing something I've wanted to do. [El-e-va-tor op-e-ra-tor] Sabrina's learning by the Suzuki method, which in the early years emphasizes learning music by ear over reading notes. That's how I learned to play piano as a kid, and the CD she listens to at night has many of the same pieces that were on the first Suzuki 33 album I ever played.


Today was her first violin recital. Max had been invited to go pumpkin picking on a farm, and Dave and I decided he would have a better time doing that then hanging at the recital. Dave went with Max, I hung with Sabrina. I was bummed that Dave wasn't there to enjoy this, so I took eleventy thousand pictures for him. I just got an Olympus Pen E-PM1, part of the Pen Ready project, and I've been having a blast with it. [El-e-va-tor op-e-ra-tor]

Sabrina seemed maybe a little nervous. She dragged me out into the hallway during intermission for an impromptu practice, and she did a nice job.

She waxed her bow like a pro.

Watch out, Yo-Yo Ma! [El-e-va-tor op-e-ra-tor]

I had, truth, wondered whether Sabrina would get up there and not do anything, which is what happened with her ballet recital at age 3. She stood onstage as all the other girls danced around her, stared serenely into the crowd and did not move a muscle except to blink (other than when she took a bow). "How come you didn't move?" I asked her afterward. "Because I didn't dance," she said, wisely.


But when her teacher, Miss Chelsea, called her name, Sabrina bounded up on stage...and somehow coaxed Miss Chelsea into coming along with her. [El-e-va-tor op-e-ra-tor] And then she did a great job, serene and self possessed.

I am not a stage mom; if Sabrina ends up quitting, so be it. Meanwhile, I am loving it and living violin through her. I take pride in—and get joy from—Max in other ways, everything from his hard-won victories to his surplus of charm. His giggles are so enchanting they could be the solution to world peace.

Really, though, there's no comparing. I have two children who both have special gifts—and who both bring me special joys.

[El-e-va-tor op-e-ra-tor]


Saturday, October 22, 2011

Ricky Gervais slams kids with Down syndrome, October good deeds, and other stuff worth knowing about


• There is a new word floating around Twitter: "mong." As in, "mongoloid," a derogatory term that once referred to those with Down syndrome. Comedian Ricky Gervais is freely using it as a synonym for "misguided," "foolish" or "wrong." (Even more charmingly, he's posted photos of himself doing his impression of what he calls "monged-up poses.") Gervais has refused to apologize; his excuse is that he is not speaking to people with Down syndrome. Which is the same argument clueless/insensitive people use about the word retard. October is Down Syndrome Awareness Month; in honor of it, please tweet @rickygervais and share your thoughts. Update: Gervais spoke with British blogger Nicky Clark and apologized to those hurt by his tweets, although I'm unconvinced he really understood what was so wrong—and of course, there's no explaining the photos he posted.

• October is also National Breast Cancer Awareness month, and lots of stores are offering discounts and donating a portion of sales to raise money for b.c. research. Retail Me Not has a good listing of merchants. Oh, and I love this Swarovski Cystrallized bracelet, $58; a chunk of proceeds go to the American Breast Cancer Foundation.


• Next week is the cleverly named National Lead Poisoning Prevention week. OK, seriously, lead poisoning is a real problem; nearly a quarter of a million children living in the U.S. have blood levels high enough to cause serious damage to their health. Major sources of exposure include lead-based paint and lead-contimainted dust. If your home was built before 1978, assume that the paint has lead. On the upside, lead poisoning is preventable; check out these tips from the Centers For Disease Control and Prevention.

• October is also Spina Bifida Awareness Month (what is it with October?!), and the Spina Bifida Association (SBA) is holding a Celebrate SB Photo Contest, created to acknowledge accomplishments of people in the community. The winner will receive a $100 American Express gift card and have their photo and story featured in the SBA's national mag.

A girl aims high at SBA Kids!Camp

• Duo Games will donate $1 to the Make-A-Wish Foundation for every "Like" on their Facebook page all throughout October, up to $10,000, and their also giving away prizes for every 500th "like."

• I am planning to feature moms who sell handmade stuff to pay for their children's therapies. Email me if you're interested in being included, or tell moms you know who fit the bill to get in touch.

• A few tips on trick-or-treating with kids who have autism or other sensitivity issues, from The ELIJA foundation, a nonprofit serving parents and professionals who work with kids with autism spectrum disorders (if you're in Long Island, NY, they're having a Halloween Spooktacular fundraiser at the Carltun in Eisenhower Park on October 28, from 7:00 to 11:00 pm):
Prepare kids early on to help them get comfortable with Halloween. Take them to a Halloween store and let them dress up, or create a picture story and read it together to help feel them out for what's on their mind.
* Practice dressing up and trick-or-treating around the house. Act out scenarios, like if someone asks "What are you dressed up as?"
* Do a dress rehearsal. Walk around the neighborhood and choose the homes you are going to visit; tell neighbor what to expect and approach your child. Give a wide berth to homes with too-spooky decorations or blinking lights.

Word: Try not be disappointed if your child refuses to dress up, as I learned one year. Whatever makes Halloween fun for your child is a good Halloween.

Friday, October 21, 2011

Max attends his first Cub Scout meeting. Kinda sorta.


Thursday night, Dave and Max headed off to the cub scout meeting, held at a local church.

How's it going?, I texted Dave about 20 minutes later.

Dave: So far too scared to go inside

Me: Tell him they will be coloring with purple!

Dave: Will they?

Me: Prob not, but maybe it will coax him to go inside. I know, evil.

Dave: OK, will try

Dave: He's not having any, but will try another time

Me: Don't leave!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dave: Will try not to

Dave: OK, he is a bit interested now

Me: What is he doing?

Me: Maybe give him a shot of vodka?

Me: Kidding

Dave: Walking around

Dave: I need one

Me: Is he inside or outside?

Me: What are the cub scouts doing? Could the leader maybe come out and meet Max?

Dave: Inside

Dave: OK, going home

And that was that.

I wasn't disappointed, not at all. Because I knew there was a good chance Max would be intimidated, and because I've learned not to set my hopes high for things like this. I was excited Max hung around a little bit, testing the waters. I was psyched that he did not screech at the top of his lungs and run out of there like demons had possessed him, as he has done in similar situations. This is progress.

Turns out the cub scout leader had told us to come to the pack meeting, which had dozens of kids, instead of the regular den meeting (which is just going to be 8 to 10 kids). So we'll try the smaller, kinder get-together next week. Though it would not be appropriate to send Dave along with a flask of vodka.

Thursday, October 20, 2011

Those moments as a special needs mom when you feel helpless


Max has been limping when he's gotten off the bus at his school in the morning. His teacher mentioned it a couple of weeks ago.

I thought that maybe we weren't putting his braces on correctly, which has happened a couple of times—his heel hasn't been all the way in. So we've made sure they're on right but still, he was limping on occasion. We have a visit to the orthopedist scheduled for next week, and I was going to discuss it with him.

Max's teacher emailed me again yesterday to say he limped after he got off the bus. She suggested that his physical therapist at school take a look at his bus seating. Usually, I just help him up the stairs of the bus, and the aide walks him back and seats him.

The PT called me this morning. "Max's legs are squished like a frog's on the bus," were her exact words. Somehow, he was sitting with his legs on either side of the booster seat (which was too small for him), knees raised, feet on the actual bus seat. What his PT said next was even more upsetting: Max wasn't seated safely. There was a five-point harness that wasn't clicked on its lower half, because it was too tight. The aide had also placed two different seat belts over him, in an "X." If there were ever an accident and Max was thrown forward on impact, his PT said, his throat and chest area might have hit the place where the straps met and gotten hurt.

I was distraught. Both because Max had been in discomfort all these weeks, and because I'd never thought to see exactly how he was strapped in. Max is not a kid who would speak up and say, "This is not comfortable." He just tolerated it.

We have generally been lucky, and happy, with this bus company. The driver is competent, unlike some of the creepy ones I wrote about over the summer who did stuff like leave kids on boiling-hot buses. But this situation was unacceptable. Max? In discomfort? And unsafe on the road? Whoa.

I called our school district coordinator, the transportation coordinator, and the bus company. They were all duly horrified. Max will be getting a bigger booster seat; he needs some support because if he were to just have a seatbelt strapped over him, he would slump to one side. I expressed concern about the judgment of the aide on the bus. She is totally sweet, but clearly not totally with it. The bus company supervisor is at fault, too, for not being more on top of training aides about safe seating procedures or doing occasional checks, which I don't think is too much to ask for.

This is a lesson to anyone who puts a child on a bus: Check to make sure they are properly strapped in. Although I don't think I would have known that the double seat-belting was unsafe if the PT hadn't mentioned it.

OK, the situation has been dealt with. Max is fine, and the only thing bugging him is that he'd much prefer to ride an "ih us" [big bus] instead of the mini one he's on. But right now, I feel so helpless. Of course, I do my best to watch over Max, and I know it. I'm generally adept at heading off problems and quickly handling ones that crop up. Yet clearly there are things that can escape my attention, and tonight I am feeling the weight of those unknowns.

UPDATE: Ok, now I am LIVID: The bus company DID NOT CHANGE HIS SEAT. When I called over there, a woman said "Why are you upset?" Um, lady? My son was seated in a way that was both unsafe and uncomfortable for weeks, without my knowing. Perhaps you too would be A LITTLE UPSET? Our district coordinator is on it.

UPDATE 2: New booster seat installed for his ride home and inspected by head of PT department at his school. Max is comfortable and secure. Phew. On to the next drama!

Wednesday, October 19, 2011

The one totally typical thing in our family...of course


It's 4:30 Tuesday afternoon, and I call home from work to tell our babysitter which train I'll be taking. Sabrina picks up.

"Hi, babycakes!" I say. "Are you having a good day?"

"Yes," she says, sullenly. I sense a temper tantrum coming on, and those are impossible to deal with by phone (where's the app for that?!), so I sidestep it.

"Great!" I say. "Can I speak with Linnette?"

Linnette is our babysitter/resident saint.

"Linnette's not talking to me," says Sabrina.

Wha?

"Sabrina, why is Linnette not talking to you?" I ask.

"I'm being bad," Sabrina says.

And then she unleashes a torrent of words about how Max was playing on his keyboard and Sabrina tried to "help" him only Max got mad and then Linnette told her to step away from him only, Sabrina exclaims, "I wasn't doing anything!"

And so it goes. Lately, the sibling rivalry is out of control. When I walk in the front door, Sabrina dashes up to me and says Max has been pulling her hair. "Eeee-yah!" says Max, gleefully, and proceeds to grab a handful of her hair in a death grip. I have to pry his fingers off one by one.

"Waaaaaaaah," wails Sabrina, and collapses on the couch.

A few minutes later:

"Maaaa-aaaax doesn't like purple!"

"Maaaa-aaaax doesn't like Cars 2!"

"Maaaa-aaaax doesn't like C!" [His best bud at school.]

Max roars. Literally. He runs over to Sabrina's violin case on the coffee table and pushes it off.

"Waaaaaaah!" wails Sabrina.

[Repeat, repeat, repeat]

I am not sure why the intensity of the sibling rivalry surprises me.

Pray that they do not maim each other.

Tuesday, October 18, 2011

Raising kids with special needs: The place where everyone knows your kid's name


Max has this thing about his chocolate milkshakes: He wants three of them, every single time. Long before we get to the ice-cream store, he's reminding us that he wants three milkshakes. Chocolate. At home, when we whip one up in the blender, same thing: "Eeeee!" says Max ("Three!"). I don't see this as a problem, though someday when Max is in his martini phase and Dave and I accompany him to happy hour, downing three martinis at once might be a bit excessive.

We usually hit the Cold Stone Creamery near us at around 6:00 at night. The store's pretty empty then, which is Max nirvana. Max dashes right up to the counter. The guy there says hello. "You want three chocolate milkshakes, right, Max?" he asks, rhetorically, and Max nods happily. He makes one shake and splits it into three cups. Max polishes them all off.

It's not very eco-correct to use three cups, so hopefully this phase won't last forever. Still, we have to hold the cups for Max to drink out of (he has trouble grasping them but insists on them) and it helps that they're not filled to the top. Most important, Max feels totally comfortable at this place and there's never any drama. I'm comforted, too—it's great to have someone behind the counter who knows Max's milkshake habit and who doesn't give me a strange look (or turn me down) about divvying up the milkshake. And the Oreo Creme Filling ice-cream doesn't suck, either.

Do you have a go-to place like this in your neighborhood where your child and family are welcome...and comfortable?

Oh, and if you are a person who takes issue with Max's milkshake habit, refer to The Spaghetti Manifesto and substitute "milkshake" for "spaghetti."

Monday, October 17, 2011

Sneaking in therapy for kids with special needs


I've always got therapy on the brain. Not the kind I could use (though I am sure my worrywart tendencies would benefit from some shrink-age)—the kind Max needs. He gets assorted physical, occupational and speech sessions six days a week. Thing is, the sessions are just 45 minutes to an hour long, and it's the ways we put those therapy techniques into practice that matter most.

This used to overwhelm me when Max was younger. We had this one therapist who would leave me a full sheet of stuff to do with him. She meant well but I always felt guilty for not being able to do every single thing. Over time, I've learned to do what I can, and feel OK about that.

I get psyched when I figure out stuff that's both fun and beneficial for Max. And if it makes our house look cool? Jackpot! This weekend, we discovered the power of Halloween spider webs.


Max was totally into draping them over the bushes in front of our house and attaching the plastic spiders. They gave his fingers a good workout. I think Sabrina was slightly miffed to see Max in action because she assumed she'd be doing them herself.

Max also helped Dave put up a little ghost ornament for the lawn. Then we lined up some baby pumpkins on the front porch. Max was totally loving it. Too bad he wasn't into raking the lawn, which could especially come in handy.

Got any good ways to sneak in therapy? And how's the outside of your house looking these days? Max would be glad to put up some spider webs.

Saturday, October 15, 2011

Today my thoughts are with...


...Josh Bauman from Our Family of 4 and his wife, Annette. I just found out that their little boy, Kade, passed away in his sleep, most likely due to a seizure.

Some of you may remember Josh from Why Dads of Kids With Special Needs Rock; after he got his officemates to shave his head, his company donated $400 to the Make A Wish Foundation. Josh was an amazing advocate for Kade, and for all kids with special needs.

When I emailed Josh, he had this to say: "Just spread the word that life is fleeting and you never know what tomorrow holds."

Please send thoughts and prayers this family's way.

Thursday, October 13, 2011

An autism-friendly Lion King performance: May we come too?


Recently, I got maybe ten different emails from people about the "autism-friendly" performance of The Lion King in New York City, which took place earlier this month. The Lion King geniuses and a panel of autism experts—including ones from Autism Speaks—joined together to make the show appeal to kids with autism, featuring softened volumes, dimmed lighting and quiet areas.

The performance is part of a new program by the Theatre Development Fund called the Autism Theatre Initiative, geared toward making performances accessible to kids and adults on the autism spectrum. Tickets were also offered at reasonable prices, as compared to the usual mortgage-payment-level fees.

I went ahead and signed up to hear more about future autism-friendly performances. The online form said "Please check the ages of the theatregoers on the autism spectrum with whom you'd like to attend." I clicked on Max's age group. I felt weird; he has cerebral palsy, not autism.

I am sure there was no person standing at the door of the Lion King performance demanding to see medical records. Max could have passed. As if!!! I'd never crash something like that. But I hope that someday, the program could be expanded to kids with other kinds of special needs. Children like Max, whose brain damage makes him sensitive to noise. Kids who have Sensory Integration Disorder, ADHD, PDD-NOS.

The show was a success. It sold out, and got good coverage in the press—as it deserved. It is absolutely, positively, unbelievably amazing that a big-deal show on Broadway show figured out ways to accommodate kids with autism. Anytime something like this happens, it opens doors for other kids with special needs. Which is why I hope future performances are more inviting to kids with other kinds of special needs.

Mind you, I am not saying I envy children with autism, or that kids with autism (or their parents) have it easy.

This is not a disability compare-a-thon.

That said, I understand that there are many children out there with autism. About 1 in every 100 children has an autism spectrum disorder, the most recent government studies say; 1 in every 303 children has cerebral palsy, according to The Centers for Disease Control and Prevention. Autism has got its act together; it has powerful organizations behind it and renowned advocates like Temple Grandin. CP, not so much.

As a parent of a child with a disability that is not autism, I can't help but wish for attention like that for his special needs. I wonder if parents of kids with other diagnoses feel the same. "Autism is the new black!" a friend joked when we discussed the Lion King performance. She has a child with Asperger's, and feels it's "acceptable" to say her daughter has that—but her child also has mental illness, and if she mentions that to people, she said, "We're like lepers." She considers it normal to be both awed and wistful about the attention autism has been getting. As she said, "It reminds me of the debate about how much attention is focused on breast cancer versus other cancers. Again, it's not a competition—they're all good causes—but when you are living one of them, it's easy to envy the other."

It's easy to feel included, too. One playhouse in New Jersey recently offered a "sensory-friendly" performance for children, after being approached by two moms of kids with autism; it was open to all kids with developmental disabilities. AMC Theatres, in partnership with The Autism Society, have regular screenings also billed as "sensory-friendly" in theaters around the country. Oh, yes: Perhaps I should get off my blogging butt and make things happen in my neck of the woods. Advances for our kids rarely happen without advocacy, and it often starts with parents. But maybe, just maybe, The Lion King could bill the next performance for kids with special needs as "sensory friendly."

I've had inclusion on my mind in recent months; I want to get Max involved in activities with so-called "typical" kids, one reason we are trying Cub Scouts. But I think inclusion should apply within the special needs community as well. I have a child with cerebral palsy. You have a child with autism. Let's welcome them all to enjoy the pleasures life has to offer, oh Lion King.


Photo/stacibug

Wednesday, October 12, 2011

Tuesday, October 11, 2011

Insurance company calls: Where's the survival guide?


Several weeks ago, I tried our new insurance company's prescription by mail service. I've always found ordering Max's anti-seizure meds in bulk to be a better deal than getting indie bottles from our local pharmacy. Besides, anytime I can have anything delivered, I am all for it. Like, if we ever decide to have that third kid, I am getting him delivered to our home.

The other day, I got a cryptic letter in the mail that said to contact the mail order company's Member Services Department. I call. The rep looks up the notes in the file and says that the pharmaceutical company does not have the medicine, Trileptal, available. That makes no sense, as this is a major medication, one used by more than one child named Max. Ten minutes later, she decides to get a pharmacist on the line. This is where the fun really starts.

I tell the pharmacist that I am not clear what is going on as surely, he would have checked whether it might be possible to get the generic form of the brand.

"There is no generic form of the medication," he says.

I am not convinced—both because Max's neurologist and I have talked about generic vs. brand and also, because as I'm on the phone with him, I do a Google search and find out that the medication went off patent two years ago and became available as generic.

I say, "I believe there is a generic kind of this medication."

He says, "No, there is not."

This is the opposite of helpful; even if there is no generic, what am I supposed to do? When might the medication become available?

I ask what the next steps are. The pharmacist says that I need to tell the rep how I would like to proceed. I say that I have no idea what he means. "The bottom line is, my son needs his medication. The risk for seizures isn't just going to go away."

The pharmacist repeats, "You need to tell the rep on the line how you would like to proceed." I say, "How I would like to proceed is, my son gets his medication!" And he says "You need to tell the rep how you would like to proceed." By this point, I am wondering if he is actually a pre-pre-recorded voice and whether soon there will be a "BEEP!" that sounds at the end of his sentences.

At last, the silent rep speaks up. "I have no idea what you want the customer to tell me," she says to the pharmacist.

Oooooo-K.

The call takes twenty minutes. Toward the end of it, by which point I am anxiously bending and re-bending a large paper clip, I ask the rep why they hadn't called me sooner. If we were going to have an inane conversation, the sooner, the better!*

(*I did not say that.)

"We tried your phone number a few times, then sent a letter," she says.

"I didn't get any voicemails—what number do you have?" I ask.

She reads a number that is a) the wrong area code and b) the wrong number.

She takes down the right number.

[Hang up, rip hair out.]
So today, I have to order the medication from the local pharmacy. Perhaps I can pick up some sedatives for the next time I have to call the prescription-by-mail "people."

At times like this, I wish I had a fairy insurance godmother. I used to. Months ago, I was given a trial membership to a service called Off Your Desk, a health claims company that handled insurance claims for customers. It was quite the pleasure to mail off bills to a rep, who followed up on claims/calls and got us some money back. That company was sold to MedClaims Liason. The fees are hefty, but may be worth it to people who have serious medical expenses or who have a low level of time, tolerance, and patience for dealing with medical claims and/or maddening insurance company staffers.

For now, I will be forced to waste precious moments of my life dealing with insurance company crapola.

I suspect you, too, have wasted more than a few precious minutes of your own life on similar calls?

BEEP!!!!!!!!!!!!!!!


istock/alexskopje

Monday, October 10, 2011

On centering your life around your child (and not centering your life around your child)


We decide to go on a ferry ride
Last summer, we went on a car ferry ride and Max loved it. For weeks after, he asked whether we could once again drive our car onto a boat. Repeating activities that Max enjoyed are more of a sure thing in our life; when we try new stuff, there's always a chance he will get freaked out by crowds or noise or something. Sure enough, Max gets giddy when we pull into the ferry cue and squeals when he sees the ship pulling in. On the boat, he sits down long enough to enjoy some chocolate ice-cream, then does laps around the deck with Dave as Sabrina and I hang out in the lounge.
It's a good ride except toward the end, when the ferry is about to dock. Max and Dave are nowhere to be found and Sabrina and I are standing in a sea of cars, a little freaked. Finally Dave and Max show up. Turns out that Max and Dave had been hanging out on a bus. The driver had invited Max on, and Dave didn't realize it was time to go.

We go to a crafts fair
There's a little festival going on in the town where the ferry lets us off. We hit a crafts fair, but within five minutes Max books out of there. Dave goes with him; Sabrina and I finish walking around and meet up with them.

We hang out in front of a sign for 10 minutes
Max liked this "Open" sign in front of a store because of the purple flap. And because it spun.

We listen to music
We head over to the waterfront, and come upon a woman singing kids' songs standing next to a giant tadpole. It's not totally clear on why someone is dressed up as a humongous tadpole, but it's nice music and free. Sabrina settles down to listen. Max is cracking up at the tadpole and listening, and I am psyched. Five minutes later, he's done. I follow him out of the area and we go and explore a boat docked nearby as Dave stays with Sabrina. "I used to be a special ed teacher," some guy on the boat says to me. Very often when we're out, special ed teachers say hi to us.

We eat in the car
I'd like to go to a restaurant for lunch, but the day's been good so far and we are not up for the potential drama; Max is wary of restaurants he's never been to. We hit a drive-thru and down salads and burgers.

We visit an outlet center
Shopping is definitely not the kids' idea of a good time, and when they're with me, it usually isn't mine, either. But the siren call of the Crocs store is strong. Sabrina gets navy blue ones. I show Max some purple Crocs; I've previously vetoed them but now I decide that, heck, if Max wants them, he gets them. Inexplicably, he falls in love with a men's size 12 pair of white canvas shoes.
He wants to color them purple. The child size won't do, because there is so much less shoe to color on. He clomps around the store in them. People are amused. I am, too, until I lift him out of them and Max has a fit, which includes plopping himself down on the floor and crawling around it in protest. We haul him out of there screeching.

We go on kiddie rides
There's no choice but to conquer and divide, which is often where we end up. Dave and Sabrina head off to explore a few stores; I plop Max into a car ride and sit down a nearby bench. He's perfectly content. The afternoon sun feels nice on my face; I am tense from the Crocs store scene.

We go to a restaurant for dinner
We venture into an Italian place at around 4:30, before the crowds descend; Max looks dubious. The dining room is empty, but Max books through it and out the other side, to an area where people can pick up pizzas. It's chilly in there and not very nice-looking, but we settle in. I whip out Max's iPad from my bag and find some Cars videos, the Max equivalent of a sedative. It works, though it doesn't always. Max has spaghetti (shocker), Sabrina has mac and cheese, Dave and I devour an antipasto and a really good chicken and artichokes dish. We breathe a sigh of relief; dinner success!

We head home
Max plays video games for most of the ride back, and downs two chocolate milkshakes. Sabrina has a vanilla one, and we color. When we all get back in the car at the end of the ride, Max says, "Nooooooo!" He'd like to sleep on the boat, and could he? We cruise off it to the sound of him saying "Nooooooo!" I tell him, "We'll go back on the boat soon, honey. We'll go back." And he calms down.

As much as we try not to center our lives around Max's needs, often, there's no getting around them. So we reconsider and let go and divide up and compromise and give in, on occasion. And that's just the way it is—for now, anyway.

Friday, October 7, 2011

Kids: even more entertaining than TV! Let's share the cuteness


The kids were totally amusing this week and making me laugh, when I wasn't haunted by dreams of being chased by a giant wedge of cheese I shoplifted from the grocery store.

• Max decided to toy with me last night. As we were talking about Halloween, all of a sudden he said "Car wash." And I was all, "We don't have that car wash anymore!" But then he flashed me a grin and said "CARS 2!" I already got the overpriced Lightning McQueen outfit for him and the headset.

• Sabrina is still loving her cast, and milking it for all its worth. She has decorated her room with the x-rays taken of her wrist. Yes, they are hanging on her walls.

• She has this habit of sticking out her tongue in photos. I have to say, it cracks me up (but I stifle my giggles and say, seriously, "Please don't do that" and then she'll stop).

• Max's favorite new sentence to say on his iPad: "Max eats chocolate ice-cream for breakfast!" Nice try there, buddy.


• You know how Max has had that habit of crashing in our bed in the middle of the night? For two years now? This week, he walked into my room at 1:30 a.m., woke me up, grabbed my hand and made me crash in his bed. Now I'm making housecalls.

• Sabrina has a new wall calendar and every morning, after she wakes up, she puts a big X through the day. The only activity she has noted down for entire month? "Pizza Day," at her school.

• The other night, as I was tucking Max in, I told him that I loved him. He shook his head.

"You don't love Mommy?" I asked.

"Nooooooo," he said.

"You don't love Daddy?"

"Nooooooo."

"You don't love Sabrina?"

"NOOOOOOO!!!"

"OK, who do you love?"

"AYE-LEH!" he said, triumphantly, his best friend at school.

I did not take it personally. I will not require therapy.

How have your kids recently amused you? Link up a post! Just type in the name of the post (not the name of your blog) and the direct URL to the post, click enter, and leave a comment if you'd like. Then we can all visit each other and relish all that cuteness.



Thursday, October 6, 2011

A thank you to Steve Jobs from a special needs mom


Dear Steve,

I am hoping you will read this on your iPad in The Great Beyond, assuming there is a good Internet connection there (and hopefully a Starbucks, too).

My son, Max, has cerebral palsy. Doctors told us he might never talk, and so we are very grateful for the words that he has. He has a lot more going on in his mind than his mouth can speak, however, and we knew early on in his life he would need a communication device. He was 4 when I first asked the speech therapist at his school about it. "He's not ready for one," she said.

I challenged her. We had an augmentative communication evaluation, paid for by our school district, in which a team of therapists determined that Max was, indeed, ready for a speech device. We got one. Only it was a total clunker, and I mean that in every which way. It was heavy to lift; my son, who has challenges using his hands, wasn't able to carry it himself. Programming it was a pain, and my husband and I detested the task. We rarely used it at home, preferring instead to guess what Max was trying to say or nodding even when we weren't quite sure we understood him. Sometimes, we all got frustrated.

Cut to the spring of 2010 and the iPad's debut. Around that time I heard about a speech app, the Proloquo2Go. I asked Max's speech therapist at his current school, an enthusiastic and dedicated woman open to trying new technology, about them. Turns out the school was buying four iPads with speech apps, and would we like to trial one with Max? YES YES YES, please, WE WOULD.

Max took to the iPad from the start. He was fascinated. Who wouldn't be? Here he is, the first weekend he had it:


I hadn't ever seen Max use his pointer finger like that, no small feat for a child with cerebral palsy whose hands and fingers tend to be stiff. The iPad motivated Max to isolate his finger and maneuver it. Soon enough, he'd learned to use a lighter touch on the screen and he'd zoom around the iPad. He also discovered YouTube and Lightning McQueen videos, another life-changing event for him.

We had somewhat of a challenge in our house when Max's little sister, insanely jealous of his iPad, started hiding it in her room. But then my husband got an iPad and now she hides my husband's in her room.

The iPad has enabled Max to share what's in his mind with the people around him. Some parents worry that a speech app will discourage verbal communication, but Max's has motivated him to communicate more. His current favorite button is the one that announces "That stinks." He enjoys telling people how much he loves spaghetti and the color purple. There is no button yet that says "Mom, leave me alone!" but I am sure he'll request one soon.

Max uses the iPad to draw, read stories, and play educational games, along with silly ones kids love. Apps made for fun, such as Talking Ben the Dog and Songify, motivate him to articulate sounds and words; ones like Cut the Rope help develop fine motor skills. He continues to watch too many Lightning McQueen videos and I hear "I. Am. Speed" in my dreams.

Other kids in our neighborhood consider Max's iPad and speech app cool—not something they would have ever thought with the previous communication clunker. It helps him fit in. I can't even imagine how many more social and educational doors it will open for him in the coming years.

Steve, you have been an inventor and innovator beyond compare, known for the Apple, Mac, iPod, iPad, even Pixar. Yet many are unaware of how much the iPad has been a game-changer for kids and adults with special needs. When I tell people that Max uses an iPad for speech communication, they are often surprised to hear that technology exists.

But this community knows.

This child knows.

This mom knows.

And I am eternally grateful to you for opening up my son's world.

So I'll say R.I.P., and by that I mean Refresh In Peace. Because I can only imagine that you will keep going, wherever you may be.

Wednesday, October 5, 2011

One creepy trip to the supermarket, and why I'd be a lousy coupon blogger


It's 9:30 p.m., and I am running around a supermarket like a headless chicken. We're en route to a beach condo for a weekend getaway, it's way past the kids' bedtime, and I'm rushing to pick up some groceries. I pay the cashier and zoom out to the curb, where our minivan is parked.

"Ma'am, I need to speak with you."

A man has suddenly appeared beside me, just as I'm about to open the trunk. A hulk of a guy wearing an earpiece.

"Yes?" I say.

He whips out a metal badge from beneath his shirt and says he's with store security. It's dark, so I can barely see the badge. Meanwhile, he's saying stuff into the headset like "I'm talking with her now."

I am creeped out. Did I accidentally take something without paying for it? I didn't even buy that much. I scan the cart. No, I don't think so.

"I need to speak with you inside the store," he says.

My mind is reeling. But wait! On the checkout line, I accidentally gave the cashier a coupon for a carton of ice-cream I didn't end up buying. Really, accidentally! (I mean it, really!) Maybe there is a coupon task force cracking down on coupon scammers! You never know in this economy. Although if coupon scamming were a crime, moms all over America would be doing time in the slammer.

"I am not sure why you need to speak with me," I say.

"I need to talk with you about an incident that occurred in the store, can you come inside with me," he says, looking Very Serious.

Incident? Wha?! Now I am freaked and I rapidly start tossing groceries into the trunk. Because I am wondering whether he is a scammer himself or a crook who is about to grab my purse or whether a car is going to pull up and I'm going to get abducted. I've seen one too many bad late-night TV movies.

Meanwhile, the kids are sitting in the car glued to Toy Story 2 and Dave is pecking away on his iPhone, oblivious to the drama taking place outside. He may never see me again, but hey, at least he is catching up on email.

"You need to leave me alone, because I have no idea what you want from me," I blurt, toss in the last of the groceries, and literally run around to the front of the car, where Dave can see me.

Miraculously, Dave looks up from his iPhone and opens the door.

"What's going on?" he says.

"I have no idea!" I tell him. "This guy says he is from security and wants to speak with me."

"Is this your wife?" Mr. Creepy asks.

"Yes," says Dave, gallantly, and starts to step out of the car.

"I'm talking to your wife, get back in the car," Mr. Creepy says. And then, to me, "I need to speak with you inside, ma'am," in a tone usually reserved for judges in TV movies who are about to pass down death sentences.

Now I am ticked off. "I'm going inside," I tell Dave. And then I book it into the store, with Mr. Creepy trotting behind me, straight to customer service.

"Do you know this man?" I ask the woman in the booth.

She looks at him. "Yes," she says.

I turn to Mr. Creepy, who proceeds to tell me that he noticed a woman following me around the dairy aisle. And I am all, "I didn't notice anyone. Are you saying she might have been trying to pickpocket me?" and he sort of grunts and I check my purse and everything is in there.

"OK, we'll take care of it," he says. Pause. "I really scared you there, didn't I?"

No s**t, Sherlock. "Yeah, you scared the heck out of me," I agree. I tell him it's time for me to go, get out of there, and spend the rest of the evening and part of the next day deconstructing what happened with Dave. Monday, I call the grocery store and tell the regional security supervisor about Mr. Creepy. "I know this guy was doing his job, to some extent," I say, "but I assume you are not in the business of terrifying your customers."

"If that was my wife, I'd tell her never to go back to the store," he admits.

They're supposedly going to talk with Mr. Creepy about his customer relation skills.

Me, I might just be a little paranoid about using coupons for a while.

UPDATE! I got a call back from the supervisor. Security had noticed a woman in a black top shoplifting cheese in the dairy aisle. Mr. Creepy saw me at the register, in my black top, and decided it was me. !!! When I freaked out at the car, he thought I was being evasive—until I marched up to customer service and asked who the guy was. He then made up the story about someone following me because he thought he would get in trouble. "He made about 10 different mistakes," the supervisor said. "There's no excuse for what he did." They're going to "discipline him" (flog him with coupons? Suspension?). I get a $100 gift card. Which I will definitely not be spending at that store.

istock/RapidEye

Tuesday, October 4, 2011

On stealing time for yourself


I had to get up at 5:30 in the morning to do it.

I did it.

Know what this is?


One small step for me, one giant leap for sanity-kind.

What are you going to do for yourself today? Reminder: Showering still doesn't count.

Monday, October 3, 2011

Happiness is a $15 wooden duck bought at a crafts fair


Max is going to be 9 in two months. It is really, really hard to believe.

Like many moms, I don't want my baby to grow up. And yet, I do want Max to grow up, and forge ahead developmentally.

I know that Max is perfectly content with himself. I know, too, that progress happens at Max's pace. I can coax him along, get him lots of therapy, work with his teachers to best help Max learn. But you can't fast-forward a child.

So what I try to do is savor the sweet, little-kid stuff he's still got instead of worrying about why it's still there. I don't always succeed.

This weekend, we went to a crafts fair. Max wanted us to buy him a wooden duck you could wheel around, with rubber feet that went "Splat! Splat! Splat!" on the pavement. It was a pretty cool duck, as far as wooden ducks go.

So we got him the duck, and Max fell in love. He walked it around for hours. He even made sure the duck was fed.

Grass, not spaghetti.

He also made sure the duck "bit" Sabrina's foot.


Practically every person who walked by smiled at Max and his duck. Then I heard some woman say, "Why, isn't he the cutest thing!" and I had a flash of "Max is too old to be doing this." I thought about other kids Max's age, who probably wouldn't want to roll a duck around town. Even Sabrina, who's 6 and who typically wants everything Max has, didn't ask for a turn. I started wondering whether he might still be rolling that duck around years from now.

I took out my mental mallet and pounded those thoughts down. Bam! Bam! Bam! Bad thoughts! Because this was our reality: Max was having the best time with that duck. Me, I could choose to worry, or I could choose to savor his happiness.

I chose happiness.