Wednesday, March 30, 2011

Special needs parenting: When your kid bugs people

A scene from our flight to Florida (picture a completely filled plane):

Max is in the window seat, Dave is next to him, then Sabrina; I am in the row across from them. Suddenly, I notice that Max is repeatedly and rhythmically kicking the seat in front of him. Hard. Kick, kick, kick, kick. Kick, kick, kick, kick.

Max likes to do this sort of thing when given the right kicking opportunity. He has this little table in his room and one of his favorite activities is to sit there, lift his knees and bang it up and down. I think he just likes the the feel of it. "It's totally normal," said our ├╝ber-sane pediatric neurologist, when I asked. "Haven't you ever seen a boy sitting on a bench and jiggling his foot?" I suspect that Max also gets a kick out of being naughty; as I've noted, he is no angel, like any other kid his age.

Only now we're on a plane. The three people in the row in front have all turned around to see what is going on; they don't notice me observing them. The elderly guy in the end seat is glaring at him.

Dave is sitting there, earplugs in, staring at the TV screen. Oblivious.

Kick, kick, kick, kick.

"Dave," I say.

No response.

"Sabrina, can you poke Daddy for me?" I ask.

She does and when Dave looks up from his TV coma I whisper, "Dave, Max is kicking the seat and it's annoying the people in front of him. Can you get him to stop?!"

Dave shrugs his shoulders. Meaning, what's so wrong (see: Mushball Dave), I'm not sure how to help, and I don't particularly care if it's bugging them.

But I care. Because I'm one of those people who minds having her seat kicked—on planes, in movie theaters, when I'm attending the Academy Awards (OK, not that)—and I know how irksome it feels. I also don't think Max should get away with it. I wouldn't let Sabrina disturb people like that; why should I let Max? I want him to understand what it means to behave yourself in public.

"Talk with him," I tell Dave.

Kick, kick, kick, kick.

"Try holding his legs down," I say.

Max wails.

The elderly guy summons the flight attendant. He gestures at Max and says something to her; she nods and walks way. I'm not sure what her plan is; maybe she falls into the "What's the big deal?" camp.

Kick, kick, kick, kick.

"DAVE!" I hiss-whisper. "Do something! Distract him!"

Dave gives Max his iPhone.


Kick, kick, kick, kick.

I am tempted to take Max for a walk only I've learned that can be a dangerous thing, as Max then refuses to sit down again and also has a tendency of barreling into first class where, alas, they do not treat me to a glass to champagne as I scurry after him.

The woman in front of Max turns around. "Here," she says, kindly, and hands back a pad of paper and a pencil.

That helps.

[Repeat scene during return flight home, except nobody reports him and he finally falls asleep.]

Obviously, Dave and I need to do a better job of packing stuff that will better occupy Max (and making sure the iPad is charged, as it ran out of juice). We also need to do a better job of agreeing about Max's public behavior.

Have you been in recent situations in which your child has annoyed others? How have you dealt with it? How has your significant other dealt with it?!


Tuesday, March 29, 2011

A little slice of fantasy life

I don't spend much time fantasizing about the high life—I'm way too busy with real life—although I do have some go-to basics: a fancy home, my own chef, cruising down a highway in a convertible (while my hair still manages to look good).

Despite my minivan lifestyle, I was able to get a taste of them all at Nissan's Murano CrossCabriolet event, where they put us up in the beautiful Omphoy Ocean Resort in Palm Beach and didn't kick me out for not using words like "265 horsepower" in conversation.

This is how a boutique hotel room looks before your children get to it.

This is how I look in a convertible. Like I was born in one, right? RIGHT?! There's just one hitch to my thing for convertibles: I'm actually wary of them because I worry about flipping over. I mean, it's not as if I were running with the bulls before I had kids or anything, but parenthood has a way of putting a damper on things.

The CrossCabriolet feels solid, though, and handles easily. It's an all-wheel drive, convertible SUV with steel roll bars that pop up in the rear in case of a flip over. It's posh, too: There's a keyless ignition/entry, a heated steering wheel and seats (leather), a Bose audio system, a navigation system and plenty of room in the front, back and trunk. The top comes down with a push of a button (in 25 seconds) and it's easy to get into the back seat, not awkward. One feature it lacks is babysitting.

I loved the turquoise color (Caribbean), which would considerably perk up our driveway during snowstorms but might require a move to California.

I rode with Elizabeth from Busy Mom, who is very chill in person. We drove by breathtaking mansions, put on Radio Margaritaville and for a couple of hours, I was living the good life. People shot us admiring looks and asked what kind of car it was. Nobody ever gawks when I'm in the minivan, except for the time I started riding out of the supermarket parking lot with the trunk still open.

The kids fell for the CrossCabriolet too, although I'm not sure where Sabrina learned to steer that way.

This is the part where Max informed Dave he wanted to keep the car. Only problem was, we weren't sure how we'd get it through security.

Later, superstar chef Michelle Bernstein, who's appeared on America's Top Chef, did a cooking demo as we dined on white gazpacho, roasted chicken and untraditional lime pie with dark chocolate; I had to force myself not to plant my face into it.

I would have liked to take Michelle home with us, as getting her through security wouldn't have been an issue, but I suspect she'd soon tire of my requests for tuna melts.

So, when you have time to think about a fantasy lifestyle, what springs to mind?

Florida's best entertainment (take that, Disney)!

Florida was quite the escape. And not just because my spirits needed lifting and it was pleasantly warm and sunny and we did a lot of great activities (more on that later this week).

The actual best form of entertainment—and distraction—were the kids.

Max toted around this Denny's menu for most of the trip because it pictured spaghetti, which he ate for breakfast, lunch and dinner. For real. Extra credit: Spot the "Max" and "Caleb" he asked me to write on it.

Max also had ice-cream every single night because we found a Stone Cold Creamery and he was so psyched it looked exactly like the one by our house. Halfway through dinner, Max would inevitably look up from his spaghetti and say "Ice-cream!" just to make sure we'd remember to take him there.

Sabrina kept calling sunscreen "sunscream." I decided not to correct her for the pure entertainment value, though I will certainly do so before she goes to college.

"Come here, Max, I need to put on your sunscream," she said every morning. And she did.

During car rides, she entertained us by reciting commercials, thereby confirming my suspicion the child has been watching way too much TV:

"Nationwide is on your side."

"Subway. Eat fresh!"

"They are happy, Happy Nappers, and they love to play with you!"

Max, meanwhile, was both entertained and terrified of the daily Mass Sliming at Nickelodeon Suites Resort, in which a gigantic bucket hanging above the pool area dumped a massive amount of green stuff onto a crowd (yes, I have photos). Max ran back to our room right before it tipped over and watched it unfold from the window, which faced the courtyard. Then he kept talking about it.

"LIME!" he'd say. ["SLIME!"]

"Was there a little or a lot?" I'd ask.

"ALAH!" he'd say. ["A LOT!"]

"What color was it?" I'd ask.

"EEEN!" ["GREEN!"]

He even slept with a little tube of it.

Even at her most obnoxious, Sabrina never failed to amuse. One day, as we were driving, she started begging us to let her see Ringo while we were in Florida. Dave told Sabrina it could wait till we got home.

"Daddy, can I borrow your phone?" she asked, sweetly. A minute later she asked, "Mommy, how do you spell don't?" Then she handed me back the phone:

Maybe I shouldn't have, but I laughed and laughed. Dave wasn't quite as amused.

Sabrina asked for the phone again.

Now Dave was amused, and I laughed so hard I cried. And it felt really good.

Share: How have your kids entertained you lately? What have they done that's made you smile or crack up?

Monday, March 28, 2011

Sabrina sings Thomas to Max

I mentioned recently that Sabrina's been doing this impression of Sir Topham Hatt that cracks us up, especially Max. She did it all vacation and here she is, caught on tape. I love how she has no clue whatsoever what the song's actual words are.

She was exceptionally nice to Max last week; clearly, there is something in the Florida water.

Friday, March 25, 2011

Cerebral palsy is not my child: In honor of Cerebral Palsy Awareness Day 2011

My child with cerebral palsy is not the same as another child with cerebral palsy; the condition isn't one size fits all. There are various types. Even within the same type, it affects every kid (and adult) differently.

My child with cerebral palsy is not defined by his disability. He is a cheerful, outgoing, spaghetti-eating, purple-loving kid who happens to have CP. He is not A Kid With CP. Please do not refer to him that way (although he'd be psyched if you called him Purple Max).

My child with cerebral palsy is not someone to be pitied. That should be reserved for children who truly exist in sad circumstances.

My child with cerebral palsy is not an angel just because he has a disability. He can be naughty and bratty and everything-y any typical kid can be. Just ask his sister.

My child with cerebral palsy is not someone I go the extra mile for because I am an angel. He is my child. You do what you can do to help your children succeed in life.

My child with cerebral palsy is not hard of hearing. When you talk about him as if he is not there, hello, he can hear you.

My child with cerebral palsy is not meant to be ignored at the playground, at the gym, or anywhere else physicality rules. He may move more slowly than other kids but he is just as gung-ho to have fun. Include him.

My child with cerebral palsy is not a "cutie pie." He is not "so sweet." He is not necessarily any of those belittling words well-meaning people use to describe children with special needs. He is "smart." He is "funny." He is any personality trait any kid can have.

My child with cerebral palsy is not someone to be openly gawked at. So what if he drools; your child eats his boogers. Kids have their quirks. (You may, however feel free to gawk at his gorgeous mom.)

My child with cerebral palsy does not have something catchy, although from the way some parents hover nervously when their child is around him, you might very well think he does.

My child with cerebral palsy is not someone or something I "have to live with." He brings me joy that may not be possible to understand...unless you have a child with cerebral palsy.

How are you helping Japan?

I'm wide awake in the middle of the night (insomnia) reading up on Japan, and it's horrifying. The official death toll has exceeded 10,000, and who knows how much higher it will go. Meanwhile, Tokyo is saying that levels of radioactive iodine in the tap water are more than twice the safe level for infants, and that bottled water is in short supply. Radiation levels above safety norms have also been found in milk and vegetables in the area around Fukushima, where the nuclear plant is located.

Before we left for vacation, I checked out charities involved in Japan relief efforts on Charity Navigator (the site has good tips about making donations and avoiding scams, as does this MSN Money article). I gave to Save The Children, which has established a Japan Earthquake Tsunami Children in Emergency Fund. I just wish I could do more; I'm worried about the babies and children. I'm going to look into whether there might be a way to organize bottled water donations, and see where I can send children's clothing.

Where have you given to? Is there a place in your area organizing relief efforts? I'd love more ideas.

Photo/Recorded Pictures

Wednesday, March 23, 2011

Clothes for kids with special needs: What are you waiting for, Prada?

This guest post is from Joanna Dreifus, who writes My Mom Shops. She lives in NYC with her two kids and is on the Board of YAI's New York League for Early Learning. She is all kinds of awesome.

One recent afternoon, I showed my 7-year-old daughter a couple of dresses and jackets that I had worn at her age. For the most part, these clothes are loud, psychedelic (I grew up in the 70s, after all), and not very attractive. They're made from cheap itchy fabrics and they boast tricky buttons, rusty zippers, and scratchy tags. No wonder my daughter said, "Blech." Of course, "Blech" is also her response to any dress that isn't made of jersey cotton and doesn't slip easily over her head. When it comes to clothing, both she and her four-year-old brother are "tactile defensive."

In each child's case, I noticed this trait during toddlerhood. It was particularly apparent with my son. Diagnosed with apraxia (a motor-speech disorder), he could not yet speak. But he screamed each time I attempted to dress him in a shirt with a tag inside it, or, for that matter, in any fabric that wasn't plain, soft cotton. No wool blends for my kids. They'd scratch their skin off—or mine.

I suspect that that many of you can relate. Lots of kids with special needs demonstrate sensitivity to certain clothing, even if they haven't been officially diagnosed with Sensory Processing Disorder (SPD). Which makes getting (them) dressed a constant, major concern.

As someone who blogs about products for children, I've found it perplexing that although many companies tout the softness and gentleness of their clothing for newborns and infants, these same businesses don't seem to recognize that significant numbers of those babies are growing up with sensory issues. These days, more and more children are unable to wear the same "big kid" outfits—replete with tags, zippers, and buttons—as their peers can (or their parents once did).

Here's the good news: In the past year or so, some smart designers have stepped in to meet our children's needs. These (mainly small) companies produce clothing that will not only feel good to your kids, but will also look stylish.

The first one I'd like to share is Soft Clothing. I've met founder/designer Jessica Ralli several times, and she conveys a keen, compassionate awareness of what tactile-defensive kids require with their clothing. Soft Clothing not only features flat seaming, tagless necks, encased elastic waistbands (and an absence of zippers, buttons, or itchy trims), but also maintains a collection that spans stylish outfits and everyday "mix 'n match" basics.

At the ENK Children's Show (an apparel trade show) recently, Soft's upcoming offerings included these sweet dropped-waist dresses (I love the one with the Peter-Pan collar, below). Available on Soft's website right now, my personal favorites are the Parisian-inspired Shift Dress with Bow ($28) and Long Sleeve Moped Tee ($18.50). Bonus: Sizes run all the way up to 12 years, recognizing the clothing needs of older kids.

Next is Teres Kids, a newer company which offers a smaller selection of "happy active clothing" for children with tactile sensitivities. Each piece is 100% organic cotton (which means the items cost a bit more, too).

I liked the new designs I saw at ENK Children's Show, too (especially that black long-sleeved tee and ruffled skirt above). Sizes run from 18 months to 8 years. On Teres Kid's website right now, my top picks are the girly ruffled shorts ($32) and the sporty unisex hoodie ($40).

Finally, I've only recently discovered By Kids Only!, a really cool site where kids themselves can draw and submit clothing designs. Each season, readers can vote online for the best designs, and the company then produces the winning outfits and makes them available for sale. Every finished product is guaranteed seamless and tagless. And shirts, for example, are designed with organic cotton spandex blend to give kids close-fitting, all-day sensory input. A great idea! My picks: Boys' Airplane Shirt ($16.99, below), Boys' Paratrooper Pants ($32.50) and Girls' Candy Dresses ($39.50).

Of course, a few big-name companies have done an admirable job of making comfortable clothing for sensory-sensitive kids. One that comes to mind is Hanna Andersson, where I buy organic underwear and PJs for my kids (again, you pay a premium). I'd love to hear what other brands or websites all of you have found helpful for your children's clothing sensitivities or needs!

Tuesday, March 22, 2011

Meet a therapy dog (and feel free to pet him)

This guest post is from a local pal, Kristen Ryan. She is The Official Vacation Pet Sitter of Puppy, our fish, and even made a house call to pick him up when I couldn't find a minute to drop him off. She is a Good Person. She blogs about her adventures as a volunteer therapy-dog handler at Therapy Dogs Heal. What she had to say:

Every time my certified therapy dog, Ace, and I pass through the revolving door at the hospital we get strange looks. Though he wears a vest when we visit the cardiac and intensive-care units, some still question why an 80-pound dog is hanging out there.

We are there to bring levity to a place that’s usually serious or sad. We’re there to break up the tedium of daytime TV, boredom, loneliness and pain. We’re there to comfort and distract and laugh with the patients, families and staff – and believe me, we serve all three groups equally. Every single visit makes me laugh, even when we do hospice and bereavement work.

Ace’s vest reads, “Therapy Dog – Please Pet Me.” Though it’s not mandated that we use a vest, it gives us a little bit of credibility when we’re asking to ride the elevator with people who aren’t so sure about big, hairy dogs.

It can be confusing because most people know that they should never interrupt a working service dog, yet here’s this golden retriever in a vest, smiling and wagging his tail, begging to be petted.

Ace and I would never misrepresent ourselves as a service-dog team. Service dogs are specially trained companions for people with disabilities. A service dog can guide the blind, open doors, alert to sounds, pick up objects or warn its handler of an impending seizure.

As part of the Americans With Disabilities Act, service dogs are permitted in any public place including restaurants and taxicabs. Though therapy dogs are tested, certified and insured for their visits, they are still considered pets that must obey “no pets” policies and health-code restrictions.

I wish more pet owners respected the “no pets” policies of stores and restaurants. People with disabilities have enough trouble getting their service dogs access without women pitching a fit because their handbag Yorkies aren’t welcome in Starbucks. Please remember that service dogs are trained to curl up under the table and wait quietly. Their impact is minimal and their right to be there is protected by law.

This week the federal government redefined the ADA’s rules for service dogs. The new restrictions crack down on people who misrepresent their pet dogs as service dogs.

“Service animal means any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability.”

The crime deterrent effects of an animal´s presence and the provision of emotional support, well-being, comfort, or companionship do not constitute work or tasks for the purposes of this definition.

The new definitions also restrict service-animal status to dogs and miniature horses (really!) and do not allow the same protection for other animals like cats, ferrets and chinchillas. I anxiously await the headline-grabbing lawsuit from someone who insists that his water buffalo is a service animal.

When a service dog comes your way, keep moving and don’t distract him, but when you come across a therapy dog at the library’s reading program or the hospital’s pediatric unit, ask his handler’s permission then proceed to love him up. That’s why we’re there. 

Monday, March 21, 2011

An interview with the author of Welcome To Holland

A few months ago, I asked if you had any questions for Emily Perl Kingsley, the author of Welcome To Holland. That's the essay she wrote in 1987—the one that so many parents of kids with special needs have read, the one that's given so much inspiration. Emily's son has Down syndrome; she has served on various boards and committees over the years to raise awareness about people with disabilities and encourage inclusion.

Emily is a longtime writer for Sesame Street and has also written children's books, videos and songs that appear on Sesame Street albums. The woman has receive 17 Emmy Awards and 14 Emmy nominations for her work on the program, along with the Secretary's Highest Recognition Award from the U.S. Department of Health and Human Services.

To sum it up: she rocks. And she was kind enough to answer lots of questions:

When and why did you write Welcome To Holland? Was it for yourself or a publication?
I was counseling a new mom who had just had a baby with Down syndrome and it just came out of me as we chatted. I was counseling lots of new moms in those days. When I got home it occurred to me that the metaphor seemed to help her and rather "made sense" so I jotted it down. In the days following I found myself referring to it several times. Before I knew it, I had sent it to a few people and before long it "took wing" and got a life of its own. Ultimately I used it as the final scene in my CBS TV Movie Kids Like These and since then it has been all over the world. It's been translated into dozens of languages and has been reprinted in scores of books, magazines, etc. It has been used as the theme of many conventions, has been set to music in many different formats, has been printed on t-shirts, aprons, greeting cards, calendars, posters, dolls, stained glass, you name it. It's quite overwhelming!

Did you ever imagine it would be this popular?
No, I never imagined it would take off in the way it has! It is quite amazing and humbling. I am incredibly gratified that it seems to have helped so many people.

Do you feel the same way now about the trip to Holland as you did when you originally wrote it? Has anything changed?
It still seems to work. I am reminded of its applicability frequently as different phases of life come and go. I'm gratified, also, when I'm told that it is helpful to other people who deal with other challenges than Down syndrome. It seems to be useful to people meeting many different kinds of situations, in fact almost any type of "change of plans." That was a surprise indeed—and a very pleasant one.

I know you must have gotten such a great response to the piece, over the years. Can you share a couple of particularly memorable responses that were meaningful to you?
I have received so much response to WTH it's hard to enumerate. I think the most incredible outcome is that I know of four actual children in the United States who have been named "Holland" as a result of parents’ response to this little essay and the help or inspiration they felt as a response to it. There is a Daniel Holland, a Paige Holland, an Abigail Holland and a Holland James that I know of. That just blows my mind!!! There is also a theme park in Georgia which plans to have a Welcome To Holland section which celebrates children with special needs. Amazing!!

How old is your son now, where is he living, what does he do?
Jason is now 36. He lives in a small group home in Hartsdale, New York with two roommates who also have Down syndrome. They have part-time staff who help them with activities of daily living (food preparation, shopping, cleaning, etc.). He works in the mail room of our local ARC, participates in Special Olympics and takes classes in music and filmmaking. He loves classical music and Broadway shows, baseball and anything Disney.

Has your son read this essay, or have you read it to him? If so, what has he thought of it?
Jason is familiar with WTH and is proud to be the inspiration for it. He has done a huge amount of public speaking, has been on television shows (Good Morning America, Donahue, many other interview shows) and is a wonderful spokesperson for self-advocacy.

Does life with a child who has special needs ever get easier? As one mom said, "Being three years into this, every day still feels hard and I'm still sad. Does having a child with special needs every feel normal (not to society, but as the mom of the child)?"
It is important to recognize that there are certain painful parts that never go away. That is a part that I emphasize in WTH—that the loss of the dream ("the trip to Italy") is a loss which you will never forget. That never goes away. That is why, when people ask to reprint Welcome To Holland, I make them promise to reprint the whole thing without cutting any parts out. They must reprint it in its entirety, including the part about the pain. But... and this is important too... there are also certain gratifications that are unique to parenting a child with special needs. It is a very mixed experience—different from parenting a "typical" child. Some aspects are easier, some harder. It cannot be boiled down into a simple equation.

What advice do you have on helping transition children with disabilities into adulthood?
The most important thing is to see each child as an individual with individual abilities, tastes, interests, deficits, needs. Children should not be cubby-holed into a one-size-fits-all direction or track because of the label they carry or the diagnosis they bear. They should be part of the planning process and their personal and human rights should be taken into consideration. All people are entitled to live with a certain amount of free choice and fulfillment and personal space and happiness. They should have choices about where to live and work and recreation. This is, sadly, often wishful thinking—but more resources should be put into giving adults with disabilities more opportunities for real life fulfillment.

Some in the special needs community embrace your essay, some do not. What are your feelings about that?
When I wrote WTH, I basically had Down syndrome in mind. The fact that it has been "adopted," if you will, by people with other challenging conditions is very gratifying to me and I'm so very happy about that. That some people feel it doesn't apply to them cannot be my problem or my responsibility. I didn't write it intending it to fit everybody. Some Autism people are upset with me because they feel I didn't make it awful enough. Well... I didn't write it with Autism in mind... and if it doesn't fit, then don't use it. Write something else. I'm grateful that it works as well as it does for as many people as it does.

About your work on Sesame Street, when you were pivotal in introducing kids with special needs onto the program: Were people on the program scared? Unwilling? Were you met with resistance?
The people at Sesame Street have been wonderfully supportive of my efforts to include individuals with disabilities at every step of the way. Nobody was ever scared or unwilling. Occasionally a film would be made by an outside filmmaker who was not as aware of our mandate to be inclusive and the film would be delivered to us without having included any kids with disabilities and I would be disappointed in that particular film. We would contact that filmmaker and instruct them to be more inclusive in future projects. Anything taped in our Sesame studios was always done with our own casting people and they have been fabulous through the years in utilizing kids with a wonderfully wide range of conditions on the show. In addition we have cast celebrity adults like Christopher Reeve, Itzhak Perlman, Ray Charles, Andrea Bocelli and many others through the years. I think that Sesame Street has a better record of inclusion than any other television show in history!

What are three of the most important things you want other parents to know about raising a child with special needs? What has made it easier for you?
(1) Take it one day at a time. If you have a terrible day today, tomorrow may be better. (2) Find support in friends, family and other parents who have been there and know the ropes. Find a parent support group. Go to meetings. If there isn't a parent support group, start one. Nothing helps like commiserating with other parents and sharing experiences, helpful hints, playgroups, support. (3) Don't let anybody talk you out of knowing what's best for your child. You know your child better than anybody. Become a fighter. Become your child's best advocate. Your child's success may ultimately depend on your fighting for his/her access to a good school program, doctor, recreation program, group home, whatever.

What's made it easier for me is the sweetness in the child himself who sends me a Valentine card that reads: "Roses are red, Violets are blue, Sugar is sweet and So do you!"

Gotta ask, have you actually been to Holland?
Actually I have been to Holland and it's lovely. I've been to Italy too and loved that too. I don't have any other birth children so I haven't had that metaphoric experience. Many people... in the Welcome To Holland sense... get to go to Italy and Holland. Lucky them!

My words: Savor whatever experience you are fortunate enough to have. Make the most of the hand you are dealt. Try to find beauty in each day if you can.

Saturday, March 19, 2011

Running away

Running away is typically not a good idea, but this time I made an exception.

I’d been invited to a couple of events in Florida (more on that when I’m back) and planned a vacation around them. The kids were super-excited.

Then my dad died. I was caught up in the logistics of his funeral and weighed down by the grief. Meanwhile, I hadn’t finished tying up all the details of our trip.

Cancel it, I thought.

Don’t cancel it, I thought. Do it for the kids. Dad would have told you to to go.

I am one of those people who can function under any circumstances. It’s something I inherited from my father, who was incredibly pragmatic. It got me through Max's time in the NICU. I was despondent but still I looked up all sorts of information, connected with Early Intervention, found a place for Max to get supplemental therapy, handled the insurance company, and dealt with paperwork. It's the way I was raised.

“Go to Florida,” said my friend Wendy, who has lost both her parents. “It’ll be good for the kids and for you, too.” She reminded me that she went to Florida shortly after her dad died, and while she wasn’t sure about it before she went, and she had bad moments while she was away, she said it was a good thing. “A trip should be a requirement for anyone whose parent has died,” she said.

So I got the trip planned. Today, we’re en route to Orlando; we're doing non-Disney activities. It’s beautiful in Florida and the kids are sunny, too. I’ve had my moments but I’ve been genuinely glad to see people I know and do some blog stuff.

Florida is the first place I ever traveled to, the first time I ever went on a plane. My dad planned it—he loved to travel. We went to DisneyWorld, and stayed in a city with a funny name. “Kissimmee, Daddy!” I’d say to him. We went to Busch Gardens, too. And ate lots of oranges.

We’re taking the kids to SeaWorld. The last time I was there was with my parents. I’m sure it will look different. I don’t know how it will feel.

Right now, though, we’re in a car cruising down a Florida highway, and I’m taking it one mile at a time.

Thursday, March 17, 2011

A boy and his real-imaginary friend

We never did get Max’s name legally changed to Purple Max, or Purple Car Wash Spaghetti Max, which is just as well because he has a new name:

Max and Caleb.

Caleb is a kid in Max’s class, some of you may recall. Like a longtime married couple, Max talks about the two of them as if they are one person (there they are above, at a Valentine's dance). Anytime you write Max’s name on a piece of paper, you have to write “Max and Caleb.” Even at the top of his homework sheets. When my shower steams up the bathroom window and Sabrina scribbles her name with a finger, she also writes “Max and Caleb.”

Max and Caleb go everywhere together, in Max’s imagination. We read a book about trucks the other day, and on every page Max would point to one truck and say “Ax!” and to another and say “Ayleh!” (aka Caleb). When I draw buses for him—he always wants me to draw buses—Max points out where he sits (he likes the last seat, as all cool kids do) and where Caleb sits (right in front of him).

We now have a permanent blue plate at the table, for Caleb, right next to Max’s purple one.

It’s been fascinating to watch Max's imagination at work. It’s also come in quite handy:

“Max, it’s time for you and Caleb to take a bath!”
“Max, Caleb wants to go to sleep NOW!”
“Max, can you and Caleb make dinner?” (As if.)

This morning when Max woke up I said, “Max, you’re going to Florida today!” It’s an escape I planned last month, before everything happened.

Max said, “Ax and Ayleh!” 

I said, “You want Caleb to come with us to Florida?

Max said, “Yeah!”

Although we neglected to buy Caleb a plane ticket, he was with us in spirit.“Ax and Ayleh!” Max said as he settled into his seat and pointed to the empty one next to him.

Max was extra psyched because I’d packed spaghetti, and he and Caleb fully enjoyed it.

What sort of imaginary activities has your child been into lately? Does he or she have an imaginary friend who’d like to come clean our house?


Tuesday, March 15, 2011

Kissing away the grief

I have been in kiss overdrive these last few days. All I want to do is kiss Max and Sabrina, hold them, and hug them. Dave, too, but even more so the kids. It's been the most comforting thing to me.

Whenever I've gotten sad over the years about whatever, Dave has given me a hug and said, "Endorphin rush!" I know that physical contact has real mood-boosting powers; there's something so very soothing about that mush of Max and Sabrina's cheeks against mine (and they've both got plenty of cheek to go around). 

At night, during bedtime, Sabrina and I trade all kinds of kisses—lash kisses, nose kisses, ear kisses, hair kisses, vacuum cleaner kisses that make us giggle. Max has been a little stingy about doling out kisses lately, but if I keep asking eventually he'll plant one on me. Kisses are something Max had to learn how to do, and I never take them for granted. 

What lifts your mood when you're sad? 


Monday, March 14, 2011

Max pays his respects

The weekend was filled with people coming to our house to pay their respects. Friends and family trickled in and out, and it was comforting to have them around.

Sabrina knew people were visiting because Zadie had died, and kept asking her questions about death ("Is Zadie still dead today?"). Max didn't get what was going on. His thoughts this weekend centered around one thing: the kiddie trailer that attaches to Dave's bike. We'd taken it out to see how it survived the winter in the damp garage, and Max only wanted to be driven around in it. Luckily, there were extra chauffeurs on hand. We tucked Max in with a Snuggie and Dave, my brother-in-law, and my sister-in-law took turns carting him around. Max would have spent the night in that trailer if we let him (although, hmmm, it might cure his co-sleeping habit).

Today, as Max whizzed around the neighborhood yet again, I was a little preoccupied with the fact that he didn't understand something had happened to Zadie. Is that weird? Grief does strange things to you. I wanted to honor my father this weekend by all of us remembering and commemorating him.

But that comprehension is not where Max is right now. There I was, once again imposing my hopes for Max's abilities onto his reality.

I had a sit-down with my heart. I said, in no uncertain terms, that Max honored my father by being his usual cheerful self and by lifting the spirits of everyone around him. That was his tribute.

I hope my father, wherever he is, knows that.


Friday, March 11, 2011

Questions kids ask about death

I wasn't sure what to say to Sabrina and Max about my dad's death; I didn't know what they would understand. So I kept it really simple.

I spoke with Sabrina first. "I'm sad today, honey," I said to her after dinner the other day. She wanted to know why. I told her Zadie had died.

"I feel bad," she said. And then, "What happens when you're dead?"

I told her it was like going to sleep and never waking up.

"Where is Zadie now?" she asked.

I said he was in a special place.

"Oh, I know where that place is," she said. "They put you in the ground."

I was kind of floored—I had no idea how she knew that.

"Why did he die?" she asked.

I told her his body wasn't working very well anymore, and that seemed to satisfy her.

Over the last few days, she's had lots more questions:

"Every year Zadie's going to be dead?"

"Lots of years he's going to be dead?"

"In a thousand years he'll still be dead?"

"Is everyone in New Jersey going to die?"

"How did he know he was dead?"

"Will everyone be dead in 1000 years?"

And the hardest question of all:

"How are you going to say goodbye?"

People say that the death of a parent often makes you think about your own mortality, but I hadn't considered that until the conversations with Sabrina. The one question she hasn't asked is whether I will someday die, though I know that's bubbling in her brain.

I told Max that Zadie had died and showed him photos. "He's not coming back," I said. Max just shook his head at me. I will try to keep explaining.

Hanging with the kids and hugging them incessantly has made this time easier, as have all the friends and family who have come by. Reading messages here and on Facebook have been comforting, too. Today, friends brought dinner and included spaghetti for Max, chopped up the way he can eat it; I was so touched. I have talked about my dad a lot, shared memories, and eaten my body weight in bakery cookies (my own death is probably the only thing that will ever suppress my appetite).

I veer back and forth. One minute, I am doing OK. The next minute, I am Googling how long it takes for a body to decompose in a grave (about a year), and wishing it were possible to open the casket and see my dad one more time.

Nighttime is hard. I lie in bed and picture my dad's apartment, dark and empty. I think of the rain falling on his grave and hope he's not wet and cold, even though I know full well he can no longer feel. I think back again and again to the last time I visited and try to remember whether I somehow sensed that it was the final time I'd ever see him.

"Which books shall we read to remember Zadie?" I asked Sabrina at bedtime tonight. She suggested Pinkalicious and Amelia Bedelia, which is exactly what you get when ask a 6-year-old for meaningful book suggestions. Then she fell asleep early in Max's bed, snuggled up beside her cousin Margo, who's 18 months old.

I snuck in and watched the two of them sleeping, their little chests rising and falling with every breath, their faces so sweet. And I felt some peace.

Photo/Bahman Farzad

Thursday, March 10, 2011

In memoriam: for my dad, who loved a good laugh

One of the things that makes it easier when someone you love dies is thinking about stuff you used to laugh over together. My dad had an excellent sense of the absurd.

Today, I was remembering when my Uncle Sidney passed years ago. As we left the funeral parlor, the guy who ran it said to my dad, "See you soon!"

Dad: "I sure hope not."

We laughed so hard as we drove away.

I'm re-posting "Nice hat, Dad!" today. He laughed when I'd told him what he was wearing, and kept right on wearing it.

* * * * *

I saw my dad on Sunday. He's 86 and a little out of it at times, but he's still plenty smart and generally not doing so bad. Especially considering the hat he was wearing.

"Um, is that a pot plant on my dad's hat?" I asked the woman who helps take care of him.

"Yes, it's ganja!" she said, cheerfully. She's from the islands, so she knows what she's talking about. Seems like she's been wheeling him everywhere in that cap. For a year now.

"Who got it for him?" I asked.

"Your mother," she said.


I called my mom.

She told me she had a pair of pants to return to some discount-type store; the place wouldn't give her cash, so she decided to pick up a few things instead. Including this bargain $1.50 ganja hat.

"Mom, what did you think that design was?" I asked.

"I thought it was a maple leaf, like on the Canadian flag," she said.

I pondered the hat. What the heck, I thought. I mean, I don't want anyone mistaking my dear old dad for a weed dealer, I wouldn't let my mom buy ones for the kids and I'm not condoning ganja or anything, but there's something to be said about being the hippest 86-year-old in the whole hood.

Tuesday, March 8, 2011

The call that you get at 4:45 a.m., the one about your dad

The phone rang at 4:45 a.m. this morning; I saw my mom's number on Caller ID and I knew. "Ellen, Daddy passed away in his sleep," she said. Max was in our bed; he heard my sobs, shook his head to say "Please don't be sad" and covered my face with kisses.

It was the call I knew would inevitably come, the one you're never prepared for.

I haven't talked about my dad much here, out of respect for his privacy. He had Parkinson's that started eight years ago. It was a slow-progressing form that worsened in the last year, and particularly in the last few weeks. He grew fuzzy and unresponsive; I will forever be grateful that whenever I saw him, he knew who I was. Then suddenly, his legs could no longer hold him. Last week, he couldn't down solid foods, due to reduced control of his mouth and throat muscles. It's called dysphagia; Max has it, too.

It was one of the ironies of my life: I had a dad with weakening muscles who needed therapy to function, and I had a baby with weak muscles who needed therapy to function. My father had high hopes for Max. He was excited to see the progress he was making, especially because he understood the obstacles he had to overcome.

My father devoured newspapers, newsletters, news programs. In college and for years afterward, he'd send me interesting articles he'd clipped out—articles about Omega-3's and how they're good for the brain, articles about establishing a trust for Max. He knew about so many things before I did. I remember him telling me about something he'd found particularly fascinating. "It's called Google," he said. "You can look anything up on it. It's going to be revolutionary. Get the stock!"

He would have appreciated this blog and been fascinated by the powers of Facebook, Twitter and other technology that came along too late in his life. He would have been proud of my taking a stand on the r-word last week. "They're nincompoops, ignore 'em," he would have said of people who left jerk-y comments.

He was an incredibly devoted dad who was always showing us new things—places, puppet shows, museums, plays, ballets. He was the designated dad in high school who'd pick me and my friends up from parties at night and drive us home.

He instilled in me a love for reading, traveling, learning and butter pecan ice-cream—one of his only food weaknesses. He was into health food long before it was trendy; when I was a kid, he grew bean sprouts in a glass jar at home and made his own yogurt. Sunday mornings, he'd cook up the most foul concoction of oatmeal with wheat germ, bran, millet and sesame seeds, and we'd have big fights when I refused to eat it.

This morning, Dave sprinkled flax seed into his yogurt. "It's in memory of your dad," he said.

Last night, coming home from work, I bumped into a guy from my neighborhood who told me his dad had died a month ago. I told him my dad was ailing, and that I'd be seeing him today. "That's good you're going to see him," he said. "See him while you can."

I didn't get the chance, and I'm pretty torn up about that. But I am consoled by the fact that my father died in his sleep and that he was at home, where he wanted to be. And that he lived a long, good life.

If he were around right now, he'd tell me to go eat an apple and get some sleep. I think I will.

Let's hear it for strange!

For the last few months, Max has been sleeping with a bowl, a plate and a cup in his bed. Purple, of course. This is a kid who's never had an attachment to teddy bears, blankies or any of that stuff. No, my son likes to canoodle with tableware.

The purple obsession isn't showing any signs of dwindling, but still: dishes? And they need to be placed just so, the bowl evenly centered on the plate, the cup the "right" distance away. Max will spend minutes arranging them when he lies down at night and make sure they are appropriately set up before he leaves for school in the morning.

A few weeks ago, he decide to leave a purple bowl and plate at his place at the table. Now they are also there all the time, also placed just so. In case you are wondering how we happened to have amassed all of this glorious purple, environmentally toxic tableware (and there's more in the cupboards), we have traveled to distant lands to acquire our collection. Or, more specifically, anytime we've visited someone's house and they have a purple bowl and happen to show it to Max, he's basically begged to take him home. He is hard to turn down.

One plate came from Disney's Animal Kingdom hotel—a woman was setting out dishes for some craft activity by the pool, and Max refused to let go of the purple plate. The cups hail from the dollar store. "Oh, it's the purple cup lady!" the guy says when I show up to purchase another stash.

I've been wondering what Max's purple tableware thing is about. It's kind of...eccentric. And then I thought: pot calling the kettle black.

I've never told you about my little crystal animal problem, have I?

This my Swarovski menagerie, started when my sister and I were teens. I think the mouse came first, bought with some babysitting money. The bird followed and then the other creatures, one by one, like Noah's ark. Dave got the rattle and baby carriage when he was in Europe on business while I was pregnant with Sabrina.

I am completely and utterly weird about them. Every morning, even as I am running around like a headless chicken getting ready for work, I check to make sure they are in their place. The kids are not allowed to touch them.

Last fall, we hired a cleaning lady to come in every couple of weeks. One day, after she'd been there, I noticed one of the bird's wings had fallen off. I was crushed. Then, a few weeks later, one of the fish's fins was gone after she'd visited. Just, gone.

I started dreading the day she was coming to clean. Which animal would she maim?

The last straw was the panda's legs. Two of them, kaput.

I called and told her things weren't working out. And it was mostly because of the crystal animals.

For the last few weeks, I have been carrying around the maimed fish in my purse; I'm hoping to make it to a Swarovski store to get it fixed. I am sure they will charge me a bundle for one measly fin but I will pay it.

So, yeah, my attachment to itty bitty crystal animals is strange. Max's purple plate habit is kinda strange.

"Normal" is all relative, anyway, as we all know so well. And overrated.

Yay, strange!

What's "strange" about you? Share!

Monday, March 7, 2011

Fear of seizures: This time, the boogeyman laughed at me

Friday night, Max showed up at our bed in the middle of the night, as he's been doing for months now. We definitely need to do something about it, but my willpower is weak at 2:00 a.m. and Dave doesn't even wake up. What I'd like is a bouncer who can stand guard at our bedroom door and escort Max back to his room and, come to think of it, keep both kids out till 9 a.m. on weekend mornings. I'm sure I could find someone on Craigslist.

Max crashed in our bed. I woke up to the sound of him laughing in his sleep, a hearty chuckle that lasted for maybe 5 seconds.

My first thought was not, wonder what amusing thing he's dreaming about. It was, YIKES, IS HE HAVING A SEIZURE?

I thought I'd once kinda sorta read that laughing in your sleep is a sign of seizure activity.

It was 4:30 a.m. I jumped out of bed and sat down at the computer, my friend and my foe. When Max was a baby, I'd spend hours Googling info about seizures, which he was at risk for. I'd convince myself he was having them. These days, he's on good anti-seizure medication (Trileptal); he last had one less than two years ago.

I couldn't find anything relevant on Google. This was, of course, because I was being ridiculous.

I emailed our neurologist, who is always quick to respond. Sure enough, he did a few hours later, and the subject line didn't even read You Are Whacked. He wrote,

"There is such a thing as gelastic seizures, but that is not the same as laughing in your sleep. The chances of having a laughing seizure are near zero, and the chances of either being awake and happy with life or having a funny dream about cars or some other favorite topic is infinitely higher. Don't worry about it."

He is so very sane.

I am typically a drama-free person (well, depending on whether or not you ask Dave). But seizures are my boogeyman, one of the things I fear most in life. I get irrational about the possibility of them.

For the last month, before bedtime, Max and I have been watching a video of him performing at his school's holiday show. At one point, his arms and face completely tighten up then relax. Every single time I wonder: Is that a seizure? The doctor long ago reassured me that the movement is a tic exacerbated by the spasticity from the cerebral palsy. But as I watch Max and a crowd of adorable kids singing "Here Comes Suzy Snowflake," I dread the moment when it happens.

Much of my fear dates back to Max's birth. He seemed like any other healthy newborn; the next day, a doctor realized he was having seizures. I'm not sure I'll ever get past that feeling of thinking everything is OK only to get sucked into a nightmare. Things may not be fine, my mind says. Pay attention. Worry.

This time around, though, it was only a dream. And a funny one, at that. Maybe he was picturing us all purple?

I suspect I am not alone here. Got something that irrationally unnerves you when it comes to your child?

Saturday, March 5, 2011

If you tick off a lot of people by asking them not to use the word "retard"

Wednesday's post about the r-word got such a great response here (check out the comments if you haven't). And it triggered good discussions with friends, including one who said I'd emboldened her to request that people not use the word, along with a flood of emails from people who said they planned to talk about this with their kids, or who already had been doing so.

The post also made its way around the web, where it ticked off a lot of people. Woo hoo! Today, for your enlightenment, a collection of comments I gathered. I have taken great care to find a lovely flowery font for those comments that I thought demonstrated particular sensitivity, understanding and intelligence.

* * * * *

When anyone uses the r-word (I don't even like to spell it) in my presence, I politely and sometimes not so politely, explain that I am offended and that their use of the r-word confirms that they are of low intelligence. The r-word is just as bad, if not worse than using the n-word. I usually hear the r-word from immature teens to twenty/thirty year olds when trying the explain how stupid something or someone is. The r-word and stupid do not have the same meaning and the only stupid thing is the person who uses it.

Maybe I should start taking offense to the word cracker and start petitioning for those little white saltines to be referred to as a different name

People have no idea how offensive the r word can be unless it personally effects you. Its not about being politcally correct or taking away freedom of speech, its about being sensative to others. Its the same as using the n word in my opinion. I have young son that was born with downs and i will protect him any way i can from the ignorance of others. Its real tough to use a word or make fun of someone you think is less perfect then you...shame on you. Life is hard enough without obvious difficulties, put yourself in someones shoes to have to live with a disability they were born with they didn't ask for. Please consider how it would make you feel if it was your child...not good huh?

Your kidding I call my nieces retards and they love it. Retard is a term of endearment

I am amazed at how self-righteous people are in their defense of a term that they know, and have been repeatedly told, is hurtful. If you've ever seen a special needs kid have it hurled directly at him/her, I doubt many of you would continue to defend it so vociferously. Special needs kids are bullied at an astounding rate.

No one ever uses the word retard to harm a handicaped person. They simply use it as a term.

Saying that something dumb is "retarded" equals a particular handicap with being dumb. THAT is the point. Nobody would say anymore That's so Polish to mean That's so dumb—we know better than to make ignorant ethnic comments like that. So why is it not clear to people that "gay" and "retarded" as catch-all terms to slam something as being lame or stupid are also just plain ignorant? It makes me sigh that so many people don't and won't—or can't—understand.

If it offends you, then move to another country

Why get so angry about your right to use that word? Why not just be nice, and try to be sensitive to people who have so much going against them in their every day lives? Don't they have enough to deal with, without you getting up in arms about your right to use that word?
I have used that word many times and often feel, even as it slips from my mouth, I probably should find a better word. I've actually pretty much stopped using it because I agree, it's offensive even if you're using it about a thing. The context is of someone who is less than, and therefore not equal to me/you/us.

Jeez, what's next-a ban on midget tossing?

Free Speech, essentially, gives one the right to say whatever/whenever. Being an adult (maturing), is supposed to give one the ability to filter what they say. Apparently a lot of people with the ability to have Free Speech did not develop the ability to mature.

So if I'm working on an old V8 engine and I want to reatard the spark do I say I want to mentally challenge the spark? Just asking

One of my friends used to use "retard" almost all the time until finally one day she was at a restaurant telling a story to her friends at a large table. She has a loud voice that carries anyway, but she was speaking extra loud so people could hear her. She ended the story with, "Isn't that just RETARDED?!" and lo and behold, a table entirely made up of people with mental and physical disabilities was sitting right behind her. Luckily she has a sense of shame and felt SO badly that day that she's never used the word again. I applaud Ellen and the message she's trying to put out there! I hope it keeps catching on.

You are being a bad parent by attempting to protect your children from hurt feelings and instlling a sense of entitlement to not having their feelings hurt

I grew up with a brother that has cerebral palsy. When someone called him or anyone else that name, I cringed. It is not 'just another thing' not too say. It is rude, unthinking, unintelligent, and makes people with any limitation, physical or mental, feel insignificant. Where is compassion and care for others? If your loved one had limitations would you want their condition cause them to be called 'this term and then hear people use that term for others that they don't approve of? Believe me, you don't.

This lady must ride on the short bus

The Constitution doesn't give a person the right to be an ass! A community of people are telling you it's offensive. Stop using it. Respect is the only "R" word people need to remember.

Related Posts Plugin for WordPress, Blogger...