Friday, July 31, 2009

Getting past the grief



Last night, I went to dinner with my friend Karen's husband. Karen, some of you may recall, is the friend of mine who passed away suddenly at age 40 in April.

Her husband is doing relatively well, trying to stay strong for their three young kids even as he grieves. I almost lost it when he told me that sometimes he spritzes her perfume in the air because the kids associate that scent with her.

He talked a lot about not wanting to feel sorry for himself. I said he needed to give himself permission to do that. I told him how in the months after Max was born, I wallowed. I wallowed with abandon. I even had a wallowing ritual: I'd go to the car, put on the heater, slip in Nora Jones' Come Away With Me CD (it had debuted that year) and sob in the driveway. It was what I needed to get the grief out.

I think he heard me, but I also think that men handle grief very differently than women do. After Max's two weeks in the NICU, Dave never cried about what had happened to him, except for the two times Max had seizures. Dave also wouldn't get emotional after big-deal doctor visits where words like "microcephaly" and "cerebral palsy" were first mentioned, unlike me.

It felt good to offer my friend's husband some perspective tonight. I want to help him so, so much.

I'm curious, how did your husbands deal when your child was born or when you first found out about his or her special needs?


Photo by Crowt59

Thursday, July 30, 2009

Breaking news: discount at Gap, Banana Republic and Old Navy

Since I love a bargain, and I'm assuming you guys love a bargain, I had to share this with you.

From today through Sunday, Aug 2, you can get 30 percent off at Gap, Banana Republic and Old Navy.

Get the coupon here, hit the stores and save the economy!!! Or at least get a pair of butt-flattering jeans.

Before you shop, read all about my insurance win below. Because I'm excited. Very excited.

Fighting the insurance company: na-na-na-na-na, I won!



It's been almost two years since I launched a war against our insurance company to get them to pay for speech treatment/dysphagia therapy for Max (it's a condition in which someone has difficulty swallowing). I've spent countless hours writing letters, making phone calls, photocopying, writing more letters and getting Max's therapists and doctors to write letters explaining why he needed therapy.

I was never going to give up. But when the insurance company denied our second appeal on the grounds, they said, that Max did not have dysphagia, I erupted like Mount Vesuvius.

Max has issues swallowing food that's not soft or mashed up. He chokes on water sometimes. He's in danger of aspirating, if we're not careful.

And so, I got the neurologist to write a letter stating that Max had dysphagia and explaining why it was a life-threatening condition. The two speech therapists did the same. The pediatrician's office sent growth charts showing how Max had fallen off them because of the eating issues he has. Sobering letters, but the proof we needed. Oh, and then I sent a strongly-worded letter pointing out that their statement that Max did not have dysphagia was patently wrong. And yeah, I used the "l" word: lawyer. As in, I would get one.

The insurance company sent the appeal for external review.

WE WON. They will pay for past dysphagia therapies and new ones going forward.

A few things I learned along the way:
• If you or your child have any sort of ongoing condition, ask to be assigned to one bill processor or rep who you can dial directly. This is so much easier (and eminently less frustrating) than getting caught up in the "IF YOU ARE HUMAN, PRESS 1 NOW!" automated phone system every time you call.
• Also find a manager at the company you can reach out to as necessary.
• Keep notes on every single phone call you make; ask for the person's name, department and any other identifying info.
• If you're getting nowhere—or getting the run-around—ask someone in your benefits department to reach out to your company's insurance rep.
• Ask your child's therapists for clues. They know what's helped other parents fight insurance companies, they know what therapy codes make it through and what don't and they can suggest wording to use in a letter.
• Insurance companies might count on you to give up/go away/expire of natural causes. But as a nice bill processor once told me, "The squeaky wheel gets oiled."

Keep squeaking!

Photo by Pewari Naan

Wednesday, July 29, 2009

I think this blog has multiple personality disorder



One day, I'm telling all of you that I don't feel like what happened to Max is a tragedy and how much he—and Britney Spears— amaze me. The next, I'm talking about sobbing at the train station over him. Which is what happened tonight.

I had a jam-packed day at work, stayed late and by the time I headed home, the kids were already asleep. So, yeah, I wasn't in the most cheerful of moods. As I got off the train, I heard a kid yell, "DAAAADDDDY!" and then I saw a little boy, Max's age, dash into his father's arms and hug him.

I just lost it right there. Literally burst into tears, covered my face with a hand and walked briskly to the car.

It was a deep-rooted pang of despair that Max isn't that little boy who can so clearly say "Daddy," that Max isn't that little boy who can so easily run to his father, that Max isn't that little boy who can throw his arms wide open for a hug.

The feeling passed in a couple of minutes; by the time I was driving home, I was fine. Things just hit me sometimes. And then I go back to being my usual upbeat self.

I guess it's part of the deal of having a kid with special needs. You know?

Coming up tomorrow: How I won my battle with the insurance company and got them to pay for a hot tub!

* OK, I didn't get the hot tub. This blog may also suffer from delusional disorder.

** Please direct any complaints about making fun of people with multiple personality or delusional disorder to Sabrina.

Tuesday, July 28, 2009

Just a babe with a kid who has special needs



I've had one thing on my mind since BlogHer, and it's not BRITNEY SPEARS (if you're wondering what the heck I'm talking about, you clearly didn't read my BlogHer opus yesterday). I'm talking about a question that any mom of a kid with special needs has to grapple with at some point:

How do I want people to react when they hear that I have a kid with disabilities?

You'd think that having been Max's mom for six and a half years now, I would have come to terms with how I'd like people to respond. I hadn't, but then I had to contend with the conversation so many times in a row at the BlogHer conference that it really got me thinking (I've been known to do that on occasion).

When I talked with other mom bloggers, sometimes it came up that Max has special needs/cerebral palsy. Or I brought it up. Either way, the typical response was for the other person to look at me with mournful eyes and said, "I'm sorry."

Now, granted, this wouldn't be half as bad if they said, "I am sorry, but he is lucky to have a babe of a mom like yourself, who does your hair?" or "I am sorry, you deserve a $500 gift certificate to a spa, I just happen to have one here in my purse, it's yours!"

No, more often than not I'd get The Sympathy Stare.

It bothers me because, though I understand that people mean well and some don't know how to respond, they're treating the fact that Max has special needs like it's some tragedy. It bothers me because it instantly creates a divide between me and the mom I'm talking with. Her: Mom of typical kid. Me: Not. And then, suddenly, I am feeling just a little sorry for myself. And I don't want to. Why should I? Max is doing amazingly well. And, I'm a babe.

I have decided that the reaction I like best is NO reaction. No sympathy. No "I'm sorry." No sad eyes. Let's just keep talking. You can definitely ask how Max is doing. You can definitely join me in musing over the fact that, yes, it's bizarre that a baby had a stroke. You can definitely comment on how handsome he is.

And you can definitely, of course, acknowledge that I'm a babe.

Photo by Southgater

Monday, July 27, 2009

Adventures at BlogHer, part 2



Word on the street was, BlogHer can get pretty wild. As always, I am considerate of your time, so let me just say right here that I did not get wasted, party naked, do karaoke, post naked pictures of myself online or anything like that. I did type a portion of this post naked. Does that count?

Yes, I was an utter and complete failure in the hedonism department. I didn’t even take a single nap, despite the fact that having the king-size bed all to myself was one of my favorite things about the conference (maid service was a close second). Mostly, I crammed in sessions and chatted with lots of web experts and (duh) bloggers. Cue “It’s A Small World After All”: I bumped into one ex coworker (hi, Cathy—check out her helpful family fitness blog, Mayberry Mom), one woman I went to high school with who’s now a web genius (hi, Deb), one woman I went to college with (Missy, who writes the supersmart Women and Hollywood), and one friend of a friend, Melissa of Single Gal In The City who is lovely, anyone know a nice single guy in NYC?

I also met some influential people.



I really wanted to meet other moms of kids with special needs, but unfortunately, when I checked in nobody told me that I'd have a chance to find some at a "Birds of a Feather" lunch, so I missed the opportunity. That's the one complaint I had about the event: I felt like I wasn't filled in enough at registration on navigating it.

Overall, the conference was incredibly interesting, a lot to absorb. I didn’t make it to “Vaginally Challenged Bloggers: The Men of BlogHer” session and I wimped out on scary-sounding ones like “Hacking, Mash-Ups and Other Rebel Coding” (what the heck is a mash-up?). But I did go to a bunch, including “MommyBlogging: Have You Found Your MommyBlogging Tribe?” (that would be you people), “Make Your Blog More Accessible” and “Dying is Easy, ROTFLMAO Comedy is Hard,” with a panel of humor bloggers who actually were funny in person, too. I sat next to Marinka of Motherhood in NYC, who made me laugh.

Here’s what a panel looks like.



Note, none of them were naked.

There was a good group of speakers and participants, including the brilliant Tina Brown of The Daily Beast, Paula Deen, if she's your type of cook, and Tim Gunn, if he's your type of guy (women were lining up/hyperventilating). My favorite thing was the awesome keynote address, where 20 select bloggers read from their posts. It was held in a humongous ballroom that almost made me feel like I was attending a fancy wedding except people were speaking about things like tampons and sperm.



Some posts were funny, some made me bawl, and all were really inspiring. Tanis from Redneck Mommy had strong words to say about the stigma attached to having a disability; Melissa from Stirrup Queens and Sperm Palace Jesters recalled the day she and her husband were at the infertility clinic and he had to make a “donation"; Danielle from Knotty Yarn wrote about a tampon she thought had gone AWOL...inside her; Wendi of Wendi Aarons ranted and raved about Diet Coke's identity crisis; and Catherine of Her Bad Mother revealed a shocking family secret.

Random list of things I learned at the conference:
• This may fall into the “duh!” category for some of you, but Twitter’s key for getting people to know about your blog. Having a TweetDeck is evidently helpful. I’m going to get me one as soon as I find out what it is.
Adwordskeywords tells you how popular words are in search engines, helpful for growing your traffic. However, it is not wise to put words like, say, Britney Spears into a post or in the HTML if you are writing about, say, your child's physical therapy session or the passing of your great aunt. Readers and Google will be onto you.
StumbleUpon and Kirtsy are your friends (they’re Internet communities with user-contributed web content). It’s better not to put up your own posts (so feel free to Kirtsy and Stumble any posts of mine that you like by clicking the "bookmark" button below, this concludes the shameless plug portion of this post).
• WordPress has more plug-ins and other bells and whistles than Blogger. I have been considering switching, but like a lot of things, all I’ve had time to do is think about it. Same goes for solving world peace. And figuring out what BRITNEY SPEARS should do next.
• If, say, a hotel named The Sheraton is supposed to give you a wakeup call and, say, said hotel somehow forgets TWO mornings in a row to give you a wakeup call, it is OK to ask said hotel for a deduction off your bill (but not truly really mind the extra sleep in the very comfy bed I was unfortunately not able to stow away in my luggage, though I really would have liked to).
• It's a good idea to set up a Facebook page for your blog. You know, in your spare time. Unless you are BRITNEY SPEARS and you have a lot of assistants who could help you do that.
• If you are linking to another post don’t just link one word—for example, I love this). Link a phrase: I love this post about a bill of rights for parents of kids with special needs. (Uh, I guess I am not done with the shameless self promotion.) It's easier on readers' eyes and easier for Google to pick up the key words.
• It is not a good idea to eat, like, 12 bags of free potato chips before you go to sleep as you listen to BRITNEY SPEARS.
• If you call home and your husband says that your four-year-old keeps asking for you, you may feel a tiny twinge of satisfaction.
Picapp has lots of great free photos. And you can find free celebrity images at celebutopia so you no longer have to illegally post them and worry that the web photo police will show up at your home in the middle of the night and arrest you. Even if you have been hanging with BRITNEY SPEARS.
• Bonus travel hint: If you have two carry-on bags (you are only allowed one), you should position one bag so it is basically resting upon your back, then place the other bag in front of it so it looks like you are only carrying one bag even though your shoulder may feel like it is about to fall off, then try to distract the flight attendant who is taking boarding passes by saying something random like, “Hey, I heard they are serving Slurpees on the flight tonight!" or "Hey, is that BRITNEY SPEARS over there?"

In my two days there, I met a lot of fab women including Melissa of Mindless Mommy who's mom to two kids with special needs; bubbly Amy of Pretty Babies; the very wise Annie of PhD in Parenting; charming Caroline, who does animal rescue and who told me she's raised $20,000 for the cause at Romeo The Cat; and Amy, a cool English teacher who writes Teach Mama, a blog about finding learning opportunities in the every day. Oh, shout out to the supercool Nancy Martira, a media specialist at Ketchum who offered to give me a tutorial on Twitter. You are a brave woman. Oh, and shout out to BRITNEY SPEARS as well.

I am not counting the twenty or so women who came up to me and said, "You look familiar!" This happens whenever I'm in a situation where I'm meeting a lot of new people. I don't know what it is about me. I usually say, "Yes, I'm BRITNEY SPEARS" or "Yes, I was recently on America's Most Wanted."

All in all, it was an exhilarating experience. And a wakeup call. Sometimes, I feel a little overwhelmed by the blogosphere—all that I could be doing, all the great stuff out there I don’t have time to get to, all the stuff I have yet to learn, the fact that I have never read BRITNEY SPEARS' blog. I'll leave you with something a panelist said about the blogsphere that was so reassuring: “We’re kind of in the Wild West right now. We’re all making this up as we go along.”

Amen, sister!

Next year, the conference is in New York, my neck of the woods. I was bummed to hear that—no trip. I think I'm going to tell Dave it's in Tahiti and try to sneak away for a week. Nobody tell him.

P.S., the day after I got home, there was a hailstorm. Do you think I have incurred the wrath of God for not getting all crazy at BlogHer? Or for taking the name of BRITNEY SPEARS in vain?

Saturday, July 25, 2009

A Little Leaguer with cerebral palsy gets to hang with the Yankees



I just got home from BlogHer, will post about it by Monday, lots to tell! First, I had to tell you about this. A few years ago a friend introduced me to Richard Ellenson, the guy who created the Tango, a groundbreaking communication device. He has a wonderful kid, Tom, who has cerebral palsy. Richard, who at first knew nothing about augmentative communication, created the device to help his son interact with the world.

I was just roaming around Twitter and saw a few people had linked to a story about a Little Leaguer with cerebral palsy who got to hang out with the Yankees this week. I go to check it out and, holy cow, it's Tom! It made me cry, from happiness.

The Yankees also made a $10,000 donation to United Cerebral Palsy in Tom's name.

Richard and Tom, you amaze me.

Friday, July 24, 2009

Adventures at BlogHer, part 1

OK, I actually haven't yet had any adventures at the BlogHer conference because it's midnight and I just got here. My flight was delayed four, count them, four hours.

When you have four hours to kill at the airport, you start noticing things like: Women wear some really cheesy clothes. And why would you choose to wear five inch heels to walk around an airport? And...


...for $14.99, you can purchase the world's most ginormous size bag of M&M's. But then you might exceed the plane's weight limit.

So, after a long haul, I arrived at the Sheraton Twin Towers. One thing I've learned over the years from Dave, who's a seasoned business travel and a world-class mooch, is to ask for an upgrade. So I did. And I got one!


How excited am I to sleep in a king-size bed tonight with NO kids kicking me or waking up in the middle of the night to ask for water?!

Very.

I'll keep you posted on what goes down here!

Thursday, July 23, 2009

8 questions for...a music therapist

video

Here are Max and Sabrina during a recent music therapy session (Sabrina regularly joins in). If you ask me, Max has a lot more potential to end up as a drummer in a heavy-metal band; Sabrina is rather, uh, blase about the whole thing.


This is Joanne, the music therapist who's been coming to the house weekly for the last couple of years. She is a supremely sweet person with a magical voice who just happens to resemble a Disney princess. I thought I'd share some of her wisdom with all of you:

Joanne, can you explain exactly what a music therapist does?
"A music therapist is a certified professional who uses music to address physical, emotional, cognitive and social needs of a person or group of people. As a music therapist who works with children, I often reinforce the goals of the speech, physical and occupational therapists through singing, instrument playing and movement to music. You can check out musictherapy.org for more information." [Note from me: to find a music therapist in your area, send an email to findMT@musictherapy.org, mention your area and include your address.]

When did you first decide to go into music therapy?
"I knew I wanted to be a music therapist the first time I ever heard the term—my junior year in high school at a clarinet workshop. To have such a passion for music and to be able to share with others such a wonderful experience...to be able to have that as a career and use it to help others grow is a blessing!"

Please share some of your favorite CDs for kids to groove to.
"Are You Ready? Here We Go! By Mr. Steve & Miss Katie, a great husband and wife team who write original children's music. Also, Music Together: Family Favorites. Music Together has a great curriculum for children and has compiled some of their best songs on this CD. And African Playground & Latin Playground by Putumayo, a compilation of great songs from around the world for both adults and children."

Explain what kind of progress you've seen Max making in the two or so years he's had music therapy with you.
"Most notable is that Max is now using both hands more often during instrument play. Initially, he wouldn't even attempt it and often refused trying something that required two hands. If he knew it was going to be difficult he often tried to choose something else. He is much more confident now, he has such determination to play the instruments that he wants, that if it requires two hands, he practices until he gets it. If he drops the drum, he picks it up and tries again....he is unstoppable! Max's confidence also rings out in his singing. When Max, Sabrina and I sing to "Part of Your World" Max takes big breathes to hold out long phrases, gets louder and softer at the appropriate parts of the song, he uses inflection...it is quite possibly one of the most beautiful things I have ever heard. I am still trying to get a complete video of him singing this...Max prefers to be using the camera instead of performing for it...but I will keep trying because this needs to be captured on film!"

Got another success story you'd like to share?
"I had the opportunity to work with a seven-year-old girl who was selectively mute. She would talk, sing and giggle all day at home, but was stricken with such fear and anxiety when at school. She didn't utter a word for months and months, but her mother insisted that she loved music so I invited her to come to choir. For a while she sat there with her arms folded across her chest trying her hardest to look disinterested and annoyed. I did my very best to ignore this behavior and continued to share my excitement for the songs and my enjoyment of singing them. Soon she started tapping her toes to the beat and instead of crossing her arms she was clapping her hands. I desperately wanted to hug her and share my excitement over this, but I was so afraid to scare her off that I held myself back. One day while rehearsing for the concert I heard the most gorgeous harmony coming from the back row...from this girl!!!!! From that day on she came in and sang her heart out, soon that transferred into talking in class too. At her graduation ceremony she even sang a solo!!!!!!! Of course, I was crying the whole time while wearing a grin from ear to ear and conducting!"

What are some music things parents can do at home with their kids to encourage them to sing?
"I think being a role model is the best thing a parent can do to encourage their child to sing. I find the more you want to push them into singing the less they want to! But the more you enjoy it and you want to do it, the more they want to join in. It's contagious! Not being afraid to be silly and sing at the top of your lungs to a tune is key. The kids don't care what your voice sounds like so you shouldn't either."

Any suggestions for a good musical-instrument activity to do with kids?
"Good ol' pots, pans and wooden spoons never fail. Since it is out of the ordinary, it makes it that much more fun and special.
I also like making shakers out of paper towel/toilet paper roles and beans or pasta. Just put the beans inside, tape up the ends and you have an instant percussion instrument. This also works with a water bottle. For more creative ideas on how to make instruments out of household items go to ehow."

So, are Max and Sabrina your cutest clients ever?
"As Sabrina would say to me....uh, yeah!!!!!!!"

One more video, for your viewing pleasure. Sabrina starts off doing a solo, since Max wanted to get behind the camera, but he joins in at the end.

video

Wednesday, July 22, 2009

Attention Jon Gosselin: Hello, you are still a father!



OK, breakups happen. Even when you have eight kids. Even when you have to do it in front of America.

OK, affairs happen. Even when you have eight kids. Even with (OK, especially with) 22-year-old party girls. Even when you know America is watching.

But let me just say, what the heck was Jon Gosselin doing spending all that time with his new gal pal in the South of France? How could he rent a bachelor pad in New York City, a two-hour plus drive from Berks County, Pennsylvania, where the family home is?

In the People article that just came out, Hailey Glassman spoke about how the two of them love watching movies, playing pool and ping pong.

Word to Jon: These are things dads typically do with kids, too.

Unlike other people, I don't take issue with the fact that the guy is moving on so quickly from his marriage. But he is still a father. When's he going to start acting like a dad again instead of just playing one on TV?

Photo by Robin Bobby

Wordless Wednesday: dance party in the driveway!





Tuesday, July 21, 2009

Totally mortifying Mommy moments



The pool we go to has pretty decent showers, a great thing if you have little kids. Saturdays and Sundays during the summer, we spend the afternoon swimming and splashing and whining about sharing our pool toys (the kids, not me), and then we herd them into the showers, put them into their pj's and they're good for the evening.

Sunday, I was at the pool with the kids by myself, Dave's on a business trip. We're in the locker room, just showered. I'm getting Sabrina dressed; Max has decided to zoom around naked and I'm letting him have his fun. We have the place all to ourselves...or so I thought.

Suddenly, I don't hear him and I'm all, uh-oh.

I look around the lockers. No Max.

I head to the showers. He's there. He giggles and trots away from me and over to one of the stalls.

"Maaa-aaax, come on!" I say, and walk over. Only to turn and find myself facing a completely nude, hefty, glaring woman in her sixties with what can only be described as humongous bosoms.

"Um, sorry!" I stammer, trying very hard not to stare at said bosoms as I scoop up Max and dash away. He starts cracking up.

I have never speed-dressed the kids so fast in my entire life.

OK, I've shared mine, share your recent mortifying Mommy moment! I know you've got one.


Border from Total Wallcovering

Monday, July 20, 2009

Max's new favorite food in the whole wide world



Max's official new food of choice is pasta. He likes any kind, but has a special fondness for Barilla Piccolini Mini Wheels with tomato sauce. Tasty, easy to chew, easy to spoon up, fun to look at.

He can down two bowlfuls, and asks for it by name: "As-ta! As-ta!"

We dump on a ton of Parmesan cheese to add calories (Max is a skinny boy).

I was just waiting for the gene to kick in with Max—for me, pasta is a veritable food group. My favorite dish is farfalle (bow-tie pasta) with salmon sauce, which I've loved ever since I studied in Florence, Italy during my junior year abroad. My other favorite foods: pizza, pickles, sushi and coconut ice-cream.

What are your top 5 favorite foods?

Photo by Amitai Gat

Saturday, July 18, 2009

Weekend update

OK, I am not sure what this means, but everyone who won an All The Bunnies book is a Jenn! (I decided to give away my own copy, so there's an extra one). The winners are:

Jenn from We Prayed For One...Blessed With Two

Jenn from Updates on Lewis Jack

Jenn from Jude: The Diary of a Baby and a Stroke

E-mail me your address at Love ThatMax@gmail.com, and I'll get them mailed. Note, I sent out all of your questions to the special needs planner, and will post the responses soon.

We've had a great weekend so far. I'd been sick all week (I didn't tell you but I got the damn flu, it wasn't the worst but it sure wasn't fun) and it was good to get out of the house. We went to the zoo and to the pool. Dave and I also saw Bruno. It was both incredibly offensive and hysterically funny. Be warned, do not see it if you tend to be easily offended. Or even not-so-easily offended!

This Thursday night, I'm going to the Blogher conference in Chicago! I'm excited to meet some other bloggers, pick up some blogging tips and, most of all, have an ENTIRE bed to myself. I'm just so easy to please.

Friday, July 17, 2009

Stem cell transplant update!



We have a date: Tuesday, August 25. We'll be flying to Raleigh on Sunday, getting Max checked out on Monday at Duke, then the infusion will happen Tuesday, with a followup with a neurologist on Wednesday.

The amazing Jenn, Jude's mom, recently mentioned stem cell therapy research from Stanford School of Medicine on her blog that shows how promising it can be, check it out. Still, as you know, I am not getting my hopes up too high, a defense mechanism I've learned over the years.

I haven't yet started talking about this with Max or Sabrina, but I'm going to be straight up: I'll tell Max he's going on a trip to the doctor, and I'll tell Sabrina that she's going to stay with our friends while Max is there. My friend Hedy pointed out that Sabrina shouldn't be too disappointed missing a trip to the doctor, but you just never know with her—she gets jealous when we give Max any extra attention. Yesterday I was showing Max in the mirror that he'd lost another tooth and she kept shoving her face in front of it to look at herself. She is so four.

I'm not getting my hopes up too high about the stem cell transplant. But I am getting awfully excited.

Here's to a weekend filled with good things for all of us!


iStock graphic/Paul Rosado

Thursday, July 16, 2009

Mama vs. Mom vs. Mommy vs. "Yo!"



Max calls me "Ohmmy." Whatever he calls me, I'll take it! It's just plain amazing that he is able to speak my name.

Sabrina has recently started calling me "Mama," which is weird because I'm not a "Mama" type of person—"Mom" is more my style. She must have picked it up from another kid. Mostly, she uses it when she wants something. As in, "Mama, can I get a new doll?" or "Mama, can I have an ice pop?" Last night she said "Good night, sweetieheart!" when I put her to sleep.

I call my own mother "Mom," and "Mommy" when I'm feeling sentimental.

What do your kids call you—or what do you hope they'll call you?

Wednesday, July 15, 2009

Got any questions for a lawyer who does special needs planning?



A woman who represents The Academy of Special Needs Planners recently sent me a book they had put together, All The Bunnies. In it, lawyers who've had family members with special needs share their stories and discuss special needs planning on a personal level. It was very moving.

Lawyers who are special needs planners help families plan for their children's future. They can give guidance on special needs trusts, establishing guardianships, estate planning, Medicaid and Social Security Disability Insurance.

I asked her if one of the lawyers would be willing to answer some questions, and she said yes. So, post your q's and I will run answers in the near future.

Also, I have two All The Bunnies books to give away! Post either a question or comment below by the end of the day on Friday and I'll randomly select two winners.

Update: You can buy the book ($9.95) or download it ($1.95) here.

Tuesday, July 14, 2009

Who wears the pants in your family?



The scene: Saturday at 1:00 p.m. Max is wailing. He's just had a jelly donut. He wants another.
Me: "Honey, one jelly donut is enough. Let's give him something nutritious."
Mushball (aka my husband, Dave): "Awww, he looooves jelly donuts, let's give him another."
Me: "But so far all he's had today is chocolate ice-cream and chocolate milk!"
Mushball: "Awwww, let's give it to him."
[Mushball proceeds to start stuffing jelly donut into Max's mouth.]

The scene: Sunday evening. Sabrina is pacing in front of the TV.
Sabrina: "I waaaaant to watch Monsters!"
Me: "She's already watched a video in the car before, that's enough TV today."
Dave: "Awwww, let's let her watch a little bit."
Me [shooting Dave evil eye]: "Sabrina, you can watch for JUST 10 minutes."
Sabrina: "Yaaaaaaaaaaay!"

I guess I wear the pants in our family, or I try to. But Mushball Dave is always caving on the little stuff.

What goes down in your house?


Photo by mmlander

Monday, July 13, 2009

Go, Max, goooooooooooooo

video

Here's Max burning rubber on his new tractor, which was recommended to us by his physical therapist at school.

Steering is a new skill for Max, and he's gotten a lot better at it even in the course of a week. (Nobody get their panties in a twist, I got the helmet on him right after I shot the video.)

I am amazed by the sight of this. It put me on a high all weekend; I kept thinking, "Max is steering! Max is steering!" and "Maybe now he can learn to drive himself to therapy!" Ha, ha.

It's not just that steering shows he's getting better with arm-muscle control—it's another step toward independence.

When Max was little-little, there were a lot more accomplishments—big and small—to celebrate. As he's gotten older, the accomplishments are more spaced apart, but they tend to be pretty significant and awe-inspiring.

Max. Is. Speed.

Friday, July 10, 2009

A senseless tragedy: parents who adopted kids with disabilities shot to death



I just found out that Byrd and Melanie Billings, parents of 16 in Beulah, Florida, were shot to death in their home. They had 12 adopted kids, several of whom had developmental disabilities. Others had been sexually abused or were born to drug-addicted moms. Evidently, eight of the kids were in the home when the couple was killed tonight. At this point, police are saying it was a home invasion by three men in a red van.

These weren't just good people—they were the supergood people of the world. Here's a story on them written back in 2005.

It just doesn't make sense. It doesn't make any sense at all.

Tonight, my heart goes out to the family and those poor kids.


Photo from Pensacoloa News Journal

Tapping into my inner Mother Teresa


Sometimes, I look like her when I haven't had enough sleep

Before I had kids, I did a lot of volunteer work. It was something instilled in me by my do-good mom and my high school, where you needed 160 hours of community service hours to graduate. I used to go grocery shopping on Saturday for a woman who had multiple sclerosis, we became good friends. In college, I ran a toddler playgroup for local kids in need. Post-college, I volunteered at a pediatric playroom in a hospital that treats cancer.

I haven't done much volunteer work since Max was born. Part of me feels like Max should be my only project because he needs as much help as he can get. But then, I want to help other people in need. And I want to teach the same to the kids. (One good thing about this crappy economy, I've read, is that it's been a boon for volunteerism; more people out of work, more time on their hands.)

I'm starting something with the kids this month: I'm going to sit down with them in front of the computer, ask them to help pick a charity and make a donation to it. Charity Navigator has lots of good options. But giving money is one thing; I really, really want to find a way to do some hands-on help.

Any of you do volunteer work?

Thursday, July 9, 2009

What makes you cry?



During the first months after Max was born, I cried daily. Even hourly. Even half-hourly. I cried about my newborn baby who'd had a stroke at birth. A baby? Having a stroke? I cried for myself; I'd had a nightmare birth instead of the blissful, soft-focus experience I'd envisioned. I cried for Dave, the most happy-go-lucky guy I'd ever met who now had a tragedy to cope with. I cried some more for Max. How disabled would he be?

These days, it takes a lot to make me cry over what happened to Max. But once in a while, things get to me. Especially when I hear someone on TV or in the movies talking about a stroke. The other night, Dave and I were watching a Tivo'd episode of Nurse Jackie, our new favorite program. Edie Falco rocks. Suddenly, she was dealing with this middle-aged man who'd had a stroke, trying to get him to utter words and lift his arms.

The tears started coming. For a minute, it seemed horribly, awfully, terribly unfair that I have a little boy dealing with the after-effects of a stroke. Then the wave of grief passed and I was back to my usual self.

The trauma I went through when Max was born lies buried deep inside me. It surfaces from time to time, then recedes. But so much less frequently than it used to.

Max's progress, his determination and the joy he brings heal me.




Photo by Tapio Hurme

Wednesday, July 8, 2009

Max is getting stem cell therapy (and other news on slithery stuff)



So, a brief recap on where things stood with stem cell therapy: Weeks ago, I contacted the people at Duke University doing the trial. The place where we'd stored Max's cord blood sent a sample over to Duke. Then we had to get a few vials of blood drawn from Max and mail those, so they could make sure that it all matched.

I got word today: Everything is good to go. The infusion could happen in the next couple of months, I'll know by the end of this week.

I can't believe it. I can't believe it. I can't believe it.

Like I've said, I'm not hoping for miracles here. I'd be grateful for even a little improvement. But, bottom line, I am not expecting anything, this is all still so experimental.

In other news, I walked in from work tonight to find this on the kitchen counter:



In case you can't tell, that's a bunch of caterpillars crawling in a glass jar. We bought the kids a Live Butterfly Garden; you send away a pre-addressed postcard that comes with the kit to order the caterpillars. Once they develop into chrysalides (within seven to ten days), you move them into the mini habitat.

Sounds like a good learning experience, right? It is. Only thing, I forgot how much I HATE caterpillars. When I was a kid, we spent our summers in the country. One year, I must have been ten or so, there was a gypsy moth caterpillar infestation. I still remember seeing the bulging nests in the trees filled with ominous blackness—ultimately, they killed the trees—and then, eventually, caterpillars underfoot everywhere.

Creepy.

I am definitely going to have to find a new place for them besides the kitchen counter.

Tuesday, July 7, 2009

Dealing with other kids' mean comments about your child



Max's mouth is typically open. It's a position that comes naturally to him; his oral-motor control is still coming along. And so, he drools a lot, something Sabrina's asked about. And gives the most wonderful big, slurpy kisses (here he is on the Disney cruise, planting one on Donald).

I'm used to the drool; other kids, not so much. It's the one thing that sets Max apart from them, aesthetically (I never was able to use those Transderm Scop patches we got for him, I'm just unwilling to put Max on any more medication). When we were at the pool over the weekend, a little boy from down the block, Finn, bounded up to Max and said an enthusiastic "Hello, Max!" Finn was with another neighborhood kid who doesn't know Max. Max was so excited to see Finn he leaned in to kiss him, mouth open wide, and drooled.

"Ewwwwww," said the other kid. "That's gross."

"Sometimes he does that," I said, simply. Then both boys bounded off into the pool.

Afterward, I wondered whether I should have also said, straight up, "You know, it's not nice to say that." This kid is about five, and unaware of the effect of his words—a good time to teach him. But here's the thing: It's going to be hard enough for Max to befriend typical kids; I don't want to further handicap him by being a preachy mom. I wondered if I should have found this kid's mother (I know who she is) and said something. Then I had the thought, as I was lying in bed last night, that I should have drooled a little myself and said, brightly, "It runs in the family!" (I often have moments of clarity like this late at night.) Now I'm sanely thinking I should set up a playdate with Finn and this other child to help them better understand Max and see what a cool kid he is, drool and all.

I'm just making this up as I go along, you know?

Monday, July 6, 2009

Nice strangers vs. jerk strangers



We're back from our mini beach getaway, a glorious few days filled with sun, ice-cream, yet more ice-cream and...


...one superfun bicycle ride consisting of Dave and me pedaling like maniacs and the kids giggling hysterically.

The only bad part of the entire four-day weekend was when Dave let Sabrina watch an episode of Hannah Montana. Now Sabrina is saying that is her "favorite" show. Crap.

One night, we took the kids to a local boardwalk where they have really great kiddie rides. Max looooved this one ride that was basically a merry go round, except with cars and trucks. The line was long and crowded, Max wasn't going to tolerate it. So Dave walked up to the attendant at the exit, explained that Max had special needs and asked if Max could slip in that way. She said OK. Only thing was, Max did not want to get off when the ride stopped. In the end, she let Max stay on for something like 20 rides; he had this big grin on his face the entire time. She wouldn't let us pay for any of the rides. Dave tried to give her a tip, she wouldn't accept that, either.

I am always bowled over when people are this kind. In general, most strangers are. Most—there was an oustandingly jerky dad at the pool yesterday who asked Max to give back the watering can he'd found floating around. The guy packed it away with the rest of his daughter's toys (which she wasn't playing with) and they sat there, unused, for the rest of the afternoon. Grrrrrr! I was tempted to take a photo of him and post it here. And to water him with the watering can.

Got any kind gestures or jerk-like gestures from strangers to share here?

Friday, July 3, 2009

Thinking ahead—and trying not to



We're on a mini beach vacay, so I roped in Debbie over at Finding Normal to guest post. I absolutely love her honesty, humor, determination and strong grasp on reality.

As a special needs mama, a Warrior Mama, I try not to think too far ahead. I try not to worry about when Addison will eat by mouth, or when she'll walk, or where she'll be placed for Kindergarten. Or how she'll be as an adult. A teenager. A seven year old.

I try not to consider the long-term effects the daily struggles will have on my other child. Or my marriage. Or my sanity. Or our finances.

I try not to worry about if she'll ever talk. Or what other surgeries she'll need. Or how many hospitalizations lie ahead.

I try really hard not to determine what developmental age they'll next classify her at, or when/if she'll be labeled "mentally retarded". I try not to worry about the mountain of paperwork that I'll complete as she ages out of Early Intervention. And then eventually the school system.

I try not to wonder about just how much she has left on her lifetime limit for our private insurance. Or what she'll need next that our insurance will refuse to cover.

I try not to think about potty training, or when diapers will be covered, or if she should get a Nissen. I try not to think about when she'll stop being failure to thrive. Or her lifespan. Or the seizures that will likely show up one of these days.

I try really hard not to worry about all of these things. Some days I do a better job than others. Tonight I rocked my girl and realized none of it is under my control anyway. And worrying really doesn't do any good, does it?

Debbie

Thursday, July 2, 2009

How do you make it through?




This guest post is from Mia, one of the first bloggers I met when I dipped my toe into the blogosphere. She writes over at General Hysteria about her humorous and sometimes heart-wrenching journey of raising three young children, one with special needs.


I donʼt know how I make it through sometimes. More accurately, I sometimes donʼt know if I will make it through. How do any of us?

I ask myself that almost each day that I wake to the playful screaming of a self-stimulating 6 year old boy at 5 am. Those days, I initially am thankful that itʼs not the dreaded, usual 1 am, latest of 3 am. Those days I take a deep breath and gauge his excitement, his unintelligible ramblings, count any words, listen for any wall banging. Those days, in the fog of a wakefulness I resist, I entertain the number of things that need to get done, decipher our schedule, determine what and how Iʼm going to make it through.

Ellen is finding herself on a much needed vacation, which of course got me wondering… for me, for families like ours where we canʼt seem to manage to get away for a number of reasons, how do we make our own mini-vacations? How do we manage to get ourselves through our days, weeks, years?

On a clear day, clouds erased from my mind, I am able to play mind games. No, Iʼm not going to list the usual of getting away, get a massage, make a break. The truth is, for most special needs families, thatʼs among the impossible recommendations of the most well-meaning of all of us. I play mind games. Revealing myself on a blog that I donʼt own, I want you to know that Iʼm constantly writing in my mind. The commentary doesnʼt end...that is my “thing." That is my strength, my weapon of choice to give me the push, the shoulder, the strength to live my life.

My life which I laughingly call Fear Factor. No partially hatched (or whatever it was) eggs, no pig slop; I wonʼt be lying in a pool of spiders nor find myself dangling from some ridiculously high platform wondering why I signed up for this. For me, my Fear Factor is in terms of commentary on my daily juggles, the constant writing of posts in my mind as if watching a video from behind my eyes, listening to my audienceʼs gasps, “awwws” and laughter. Nope, not crazy - just finding the humor.

Yes, humor is the main way we can make it through. Why not find the humor in how our children need to have their pancakes formulated to perfection? Why not help our children find the humor in their life situations, their spills that donʼt truly hurt? Why not remind ourselves that though we didnʼt ʻsign upʼ for it, no one could take our place and we wouldnʼt willing give up our part anyway. Use the self-talk that we all have in a positive, laughable way.

But guiding your inner speak towards humor can be extremely difficult. It took me close to 4 ½ years to be able to do this, and it doesnʼt occur each day. But when it does happen, it helps. When it doesnʼt, I turn to music. Music lifts the spirit and soothes the soul...or something like that. What I do know is that Iʼve started taking note of what songs unfold a part of my being without prompting; what music invokes a feeling I thought long gone, an uncontrollable, heart-aching happiness emerge from my depths. I note these tunes, the artists. I keep them in mind (okay, I canʼt remember anything, so I actually have to write them down...where is that sticky anyway) and find them. I listen to them, recall the feelings they invoke and bring
those lyrics, that tune, the movement, to the surface during times where I think my mind might be lost for good. And the kids love the change they see in me.

The change can come in other ways too Little steals of time that cost nothing. Long showers, buckling your kids up and taking a drive, talking with other parents of special needs kids. Take the 10 minutes to polish your toes in between tweets after the kids are down, Tivo your favorite shoes and give yourself a late night marathon, lose yourself in a good book.

Weʼd all love to get away. Gain access to the out of reach week away in a new place, a warm beach, sand between the toes, sweet reminiscent smells of coconut sun tan lotion. But if we canʼt, we have to find our own little secret ways of getting away, our own “thing” for finding the strength to make it to the next day. For in that next day, something special will happen, if weʼre ready.

So, what about you, what do you do?

Mia

Photo by Halighalie

Wednesday, July 1, 2009

Sorry, celebs: My child's cuter than your child



One of my favorite hobbies, aside from restoring antique vacuum cleaners and cultivating heirloom seeds in used egg cartons: I like to compare my kids to celebrities' kids. Make that, I like thinking that my kids are way cuter than theirs are.

It started when Max was a baby. In the months after he was born, I was inconsolable. The only thing, and I mean the only thing, that gave me joy was Max's cuteness. He had that smile, chubby cheeks and yummy baby thighs with rolls of fat.



Sarah Jessica Parker had given birth to her son, James, two months earlier. When I'd see paparazzi photos of the two of them, I'd inevitably think, "Max is cuter."

That started it. Since then, anytime I see photos of celeb kids, I can't help but compare them to Max or Sabrina. Granted, there are a few Hollywood tots that rate on the same level of cuteness—Suri Cruise, Levi McConaughey, Shiloh Jolie Pitt. Well, almost. But then there are ones I think Max and Sabrina totally out-cute, including Emme and Max Anthony (word to Jennifer and Marc: nice to steal my kid's name!).

Odd, aren't they, these little mind games that give you a lift.

We're off to the beach for a few days, I have great guest posters lined up for Thursday and Friday. Happy, happy 4th, everyone!


Photo: Pacific Coast News Online


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