Wednesday, March 31, 2010

Our Disney trip 2010: the cruise



Before I went on a Disney cruise, I thought cruises were cheesy; too many years of watching The Love Boat will do that to you, I guess. Not Disney's. We were on The Wonder (last year we went on The Magic), and they're both almost identical and in beautiful shape. They're also meticulously clean, one thing you really want in a ship. The crew bent over backward for the four days we were onboard to make both kids happy and accommodate Max's needs.

We were chosen by the kids' club staff (a drop-off place to leave the kids and flee for the sun deck) to be the Family of The Cruise. I'd like to think it's because of my wit and good looks, but I have a feeling Max charmed them.


Every morning, they made a personalized card for the kids and posted it on our door. At the end of the cruise, they gave us a bag of goodies for them including sun hats, Disney pillowcases to color in and t-shirts. Sweet!

There were several times each day when you could meet up with the characters. Max was enchanted every time. He'd squeal, he was so excited. If the line was really long, sometimes they'd let us go right to the front. If things were on the quiet side, though, I'd have Max wait in line like every other kid. He has sensory issues about crowds but still, I don't want to spoil him.


He decided that he wanted to really impress Daisy. So he went right up to her and snorted. Max had a bit of a cold, and he's recently learned how to blow his nose, something he's quite proud of (he has issues with air control). Sure enough, a big glob of grossness came right out of his nose. Max looked very pleased with himself, Daisy keep her poise, I made quick use of tissues.


Goofy got down on the floor and rolled around for Max, who joined him. Oh, and yes, Max is wearing his pj's. He declared one day Pajama Day—not a bad idea, right?


Max thought Pluto was a laugh riot.


And, of course, he was in awe of Mickey.


Here he is with his future wife. I think he and Minnie were practicing a jitterbug for their wedding first dance, but I can't be sure.


"Hey, babe, want to see a snot bubble?"


Sabrina got a kick out of the characters, too. She liked to flash her cabin card at them because it had her name on it.


This is the only time she wore a dress; she still only wants to wear Max's stuff. I'm thinking it'll save me a bundle on spring clothes.


Sabrina had firmly told me, before we left the cruise, that she wasn't into princesses anymore—except for Tiana. Just in case, I brought the Snow White dress she wore for all seven days of our cruise last May, but true to her word she did not wear it.


She loved the pool. And pole dancing.


She wrote her first postcard and sent it to her pre-K class.

The ship stopped in Nassau the first day. It was pouring, and we'd been there before, so we just roamed around the port area, which is filled with jewelry shops. Dave is obsessed with watches and he had to try on one at every store. He also got a bargain cigar, just because (he doesn't smoke). On the second day of the cruise we hit Castaway Cay, Disney's private island. It's beautiful. We played on the beach, enjoyed a barbecue, took naps (OK, that was just me).


This was one particularly beautiful sight to see, let me tell you. It's the first time Max ever did any kind of floating by himself with a tube. And, yes, he is wearing Sabrina's suit because it has purple in it.


Sabrina, of course, had to wear his.

There were a ton of activities on board. You and the kids could go to a dance class, mini soccer, Disney movies—we got to see Alice in Wonderland, which was fantastic. There were also plenty of grownup activities, including cooking demonstrations, wine and beer tasting, Pilates and other exercise classes. Dave and I mostly vegged out, went swimming (hel-lo, hot tub), and roamed around the ship with the kids. They are big fans of shuffleboard. They are also big fans of eating their body weight in ice-cream.

True to form, Max preferred room service over going to the ship's restaurants. A couple of times, he and Sabrina stayed at the kids' club for dinner, and they fed him, no problem. Although they do not change diapers, they give you a pager so you can be on poop call. The staff really looked after Max, helping him do crafts and even changing his shirt when it got wet from drool. And best of all, they remembered to refer to him "Purple Max." I am thinking of getting his name legally changed.

One night, Dave and I dined at the Italian adults-only restaurant, Palo. It was excellent (the food is generally very good, and I have an extra three pounds to prove it). Dave, Sabrina and I also saw shows at night including Toy Story, the musical, and The Golden Mickeys. Max happily stayed in the kids' club, because performances wig him out.


Every night, our cabin steward would leave a towel animal; this was Max's favorite.


I know, I want to be there too.


Our four days flew by. The kids were bummed about getting off the ship, but they had Disney World to look forward to. Disney trip part 2, coming up. Off to make the towel animals!

Tuesday, March 30, 2010

Kid goodies giveaway: Win three great books!



Because I need to dedicate the rest of my life to wading through my 572 Disney photos, or at least the next day, I've got a nice giveaway to share in the meantime. Any of you familiar with the "If You Give A..." series of books by Laura Numeroff? Max and Sabrina are big fans of If You Give A Kid A Pancake, an adorable book.

Laura's partnered with Sleepy's and First Book, a non-profit organization that provides books to children in need, to promote bedtime reading. She's doing a series of readings of her latest book, The Jellybeans and the Big Book Bonanza, today in New York City at Sleepy's on East 86th, between 1-2. She'll also be in a Boston Sleepy's on 3/31 from 4-5 (727 Memorial Drive, Cambridge) and in a DC-area Sleepy's on 4/1 from 4-5 (401 Highway, Arlington, VA). You can visit Sleepy's Bedtime Stories for a chance to win lunch with Laura in New York City.

The Jellybean series is about a group of cute animals who call themselves The Jellybeans. In the new book, they take a trip to the library and find books on topics they love. Way to encourage reading! Laura's offered to give away a signed copy of The Jellybeans and the Big Book Bonanza, along with If You Give A Kid a Pancake and If You Give A Moose A Muffin to one winner, worth $50.

To enter, just leave a comment about your bedtime ritual with the kids. Ours can be a little erratic, but it usually consists of a bath, brushing teeth (sometimes we do Max's in the tub, he's less likely to mind it there), and then me sitting with the kids on the blowup beds in their rooms (yes, they're still sleeping on them!) and reading.

Note, you must leave your e-mail address if yours is not visible on your blog.

BONUS ENTRIES: After you leave your main comment, leave a separate comment for each of the following that you have done:
Follow LoveThatMax on Twitter.
Tweet about this giveaway and leave a comment with your tweet time stamp (translation for Twitter newbies: click on the time below the Tweet, which shows you the URL). You can use this tweet: Win three great books by a bestselling children's author worth $50 from @LoveThatMax. http://lovethatmax.blogspot.com
Subscribe to the To The Max feed; you can do that here, or another way, and leave a comment saying how you subscribed.
Follow this blog on Blogger.
• Join the To The Max fan page on Facebook.

This giveaway is open until Tuesday, April 6, 2010, 11:59 p.m. EST, and is for U.S. and Canadian residents. I'll pick the winner via randomizer.org, announce the winner the next day, and alert you by e-mail.

Update: The winner is SoDucky. Congrats, and happy reading!

Monday, March 29, 2010

Disney Cruise 2010: Max meets Minnie

video

Hello, Mouseketeers. We're back from our Disney Cruise/Disney World trip, our flight got in late and I'm wiped. I have lots of good stories, photos and tips to share, and yet more photos, but for now here's a video of Max hanging with Minnie Mouse on the cruise (hence her fabulous outfit). This scene is typical of our meet-'n-greets; every single one of the characters—I am not exaggerating—took extra time with Max, and other kids with special needs. Usually, Max would be awestruck at first. Then he'd want to make out with them. And then they'd just hang.

He really, really loved Minnie. It's Max's first crush! Given Disney's deep pockets, I have to assume they'd pay for the wedding.

Friday, March 26, 2010

It's Purple Day 2010!

Hi! Taking a break from Epcot to let you all know that today is Purple Day, created to raise awareness about epilepsy. You can read all about it at purpleday.org.

We are having a fantastic time at Disney; they are beyond accommodating to kids with special needs. Max introduces himself to everyone as Purple Max. His new favorite ride is...the monorail! He loves the characters, too. And Mickey Mouse ice-cream pops (my weakness as well).

Please go learn more about Purple Day, and have a purplelicious weekend!

Thursday, March 25, 2010

Really great online activities for our kids



Free storytime: At Storyline Online, actors including James Earl Jones, Melissa Gilbert, Elijah Wood and Amanda Bynes read out loud from kid books. James Earl Jones booming at you from your computer: how awesome is that?!

Free reading help: Starfall helps kids learn to read with phonics; over at Alphabet Printable Activity, you can have all sorts of A to Z fun.

Free occupational therapy (well, the next best thing): OTPlan is an absolutely amazing site with a wide variety of therapeutic activities for kids.

Free books: Enchanted Learning has short, printable books for kids on all sorts of topics. Sadly, they do not have one that teaches kids how to make their parents breakfast in bed.

Got any good ones to add?

Wednesday, March 24, 2010

7 Questions For...a twentysomething with cerebral palsy



I don't remember how I first connected with Sarah (that's her above, with some friends), but I do remember being wowed by her from the start. She writes the blog Stand Tall Through Everything, and she's smart, sensible, cool, funny, real. She has cerebral palsy and she's reminded me, on more than one occasion, not to be get too bummed about Max's disabilities. She always includes cool quotes at the end of her e-mails; I loved this one by Maya Angelou: "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." Read what Sarah has to say and you'll find her pretty unforgettable.

OK, tell everyone a little bit about yourself.
I’m 26. Right now I’m a supervisor for a polling institute, but I’ve been a nanny, office assistant, and missionary at different points in my life. I have a B.A. in drama and certificate in pastoral ministry. I tell people I have two degrees that ensure I’ll make no many for the rest of my life. Right now I’m living at home, but I have lived on my own in the past and don't plan on living at home long term. I went away for college and lived on the west coast for a year post college, I did a year of service in Washington State (my second home). I have friends all over the world, and a fair amount in convents, so my social life often consists of e-mails, text messages, calls, and snail mail. But it just makes things that much more special when I do get to see people. Plus I get to know who my friends really are since it takes more of an effort to stay in touch these days. I tend to keep things low key, like watching a movie or getting a pizza. Any “big” or “crazy” fun activity I take part in with friends is usually their idea, I’ll either agree to it or think of something better. When I’m alone I’ll usually watch a movie, read a book, or write. I’m an only child so I can pretty easily entertain myself. Right now my days are filled with post-op rehab and working. In September I had pins and plates put into my hips bilaterally and right ankle to correct bad alignment, which will hopefully delay the effects of arthritis and eliminate the need for future joint replacement.

Can you share a little bit about your cp, and what kind of therapy was most helpful for you growing up?
I have spastic diplegia cp. I was born prematurely at 32 weeks. I was diagnosed some time after my first birthday. It’s not something my parents and I have ever sat down and discussed. Growing up there weren’t as many therapies available as there are now, or at least they weren’t as well known. I would say “typical” physical therapy was most helpful since it’s the only thing I really went for. People would try to get me involved in different programs combining sports and pt for socialization and exercise, but I never really felt like I belonged there so nothing lasted longer than a day or two. I often did things “normal” kids did like play in the woods and take swim lessons. Those kinds of things were helpful, too; even though they weren’t used as therapy they did have their benefits. I could swim better than some of my friends growing up, and still can!

How has having cp affected your life, do you think?
I would like to say it's had no effect on my life but that would be horribly optimistic, and maybe delusional. Let me put it this way, as often as I find myself hating having cp, I know I wouldn’t be who I am without it, so it’s hard for me to say I wish I didn’t have it because it would make me a completely different person.

What's been your greatest success?
One of my biggest successes was being a missionary. But in the interest of full disclosure, I’m still waiting for my greatest success.

And what's been your biggest challenge?
That’s hard for me to say, once I think I’m met or overcome my biggest challenge another one comes my way. So I guess you could say life is my biggest challenge, but I think that’s true for most people, whether they realize it or not. It’s hard to say how I deal with physical challenges because I’m never really sure how I’ll deal with them until they’re already dealt with. You eventually know what you’ll have trouble with and you have two choices: (1) Stay away from it, or (2) Find a way to deal with it. When I’m in a new situation I usually have a friend or someone with me, because that’s just how I prefer new things. If I’m on my own, which has to happen now and again, I try to prepare for the worst and hope for the best. But there are going to be things I just won’t be able to do, that’s it.

What's your biggest aspiration?
As cheesy as this is going to sound, my biggest aspiration is to be happy, whatever that involves. Although getting my debt paid off and having insurance would be pretty great :)

What advice would you have for parents raising kids with cp?
If your kid has cp they’re no different than any other kid, at least from their perspective. They know nothing else other than life with cp, even if they have siblings. I don’t see myself as someone with cp, at least not at first, and even then it takes someone pointing it out to make me see it. One of the biggest things that bothers me about parents of cp kids is when I hear them say things like, “I wish you could be normal,” or “Now you can be a normal kid.” It really makes my skin crawl. Once, while I was watching something on Discovery Health—I’m a Discovery Health junkie—this kid who was maybe 4 and had cp was having tendon lengthenings. Having had tendon lengthenings myself, I was interested to see the actual procedure done. This kid wasn’t even discharged from the hospital and his mom was crying—I mean bawling—because now he could be like “every normal boy” and I’m thinking...well I won’t tell you exactly what I thought since I’m sure you’d like to keep this at least PG-13! But basically it was, “That’s a lot of pressure to put on a kid who is barely out of an OR” especially since his normal isn’t “everyone’s” normal. It’s like trying to put a round peg in a square hole. As hard as this is to hear (well, read), the best thing you can do for your child (and yourself) is let go of your perspective of how your child could be and focus on who your child is. Everyone has gifts, talents, faults, and failures, disability or not. The only difference is, if there is one, is the differences are more obvious. I’ll never be a marathon runner, that’s pretty darn clear, but not everyone is meant to be one either. I can guarantee you though that having a disability gives you gifts that the non-disabled don’t have and won’t ever have.

Tuesday, March 23, 2010

Post replay: A Bill of Rights For Parents of Kids With Special Needs

Hi, peeps. We're on the Disney Wonder right now, so I'm sharing one of my all-time favorite posts, A Bill of Rights For Parents of Kids With Special Needs. If you have any to add on, share!


We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

For a printable copy, e-mail LoveThatMax@gmail.com.

Monday, March 22, 2010

Wills for parents of kids with special needs



Kiera asked to write this guest post because she and her husband were getting their will done and thought it was something a lot of parents of kids with special needs struggle with. Kiera is one of the first mom bloggers I met; she's mom to Reichen (aka Little Dude), a handsome, happy and "sometimes-troublemaking-toddler" who happened to have a stroke before birth. He's getting his tonsils out today, so everyone send him get-well-soon vibes. Kiera blogs over at Ike Happens! I found what she wrote helpful and touching; I'm sure you will, too.

When my son was born we had initially decided it was the time to get things in writing. Then our son was diagnosed with an in-utero stroke. Our focus switched from “What would he do if something happened to us?” to “What do we need to do now that we know something happened to him?”

I am so proud to say that this month, after three years of procrastination, my husband and I finally sat down and met with a lawyer about getting a will in place. This was a LONG time coming and something that we really struggled with, especially knowing that our child had special needs. I am hoping that by writing up what we did, it might help others who are in the same position to see that it was not nearly as difficult as we thought it would be

Here is the process we followed:

• Custody: Who "gets" our Little Dude. This was by far and away the trickiest decision when planning our will, and most of the reason why it took us close to three years to get it done. I love my family and my husband’s family, but when it comes down to it, none of them are us. It is hard to imagine your child in another person’s life and you not being in their life. We had to move past that and decide what was non-negotiable for us for the people raising Little Dude.

Some of the factors we used to decide it were:
- Will he be located close to both families?
- Will he be in an area that has good schools with known special needs programs, to help with any individual education plan needs he has?
- Will the custodians be willing to take on the sheer volume of therapies, doctors appointments, specialists and annual check-ups that are required for any child who has had a stroke?
- Will they take him into the family and give him all of the love, hugs, kisses and cuddles that he deserves?

• Financial: Who gets to control Little Dude’s money? For us this was an opportunity to make sure that both families are still involved in Little Dude’s life. We specifically picked someone from the other side of the family to handle the financial side to ensure that there was a tie between the two sides.

We used a similar set of factors to decide who this would be:
- Who would work well with the custodial parents?
- Who do we know will always be on the lookout for the best interest of the Little Dude?
- Who will be willing to say “no” to the Little Dude if they felt it was not in his best interest? (Trust me, this person has a spine of steel and will be great at this if needed!)

• Confirming our picks: After we made out decisions on custodial and financial, we met with each of the people and asked them if they would be willing to take the responsibility. We explained why they had been picked, and asked them what they would need from us to make sure that they would be prepared to take on the duties if needed.

• Deciding on a Special Needs trust: We spent quite a bit of time talking about this. Ellen already addressed some of these points in an earlier post on estate planning, which helped to prepare me with questions to ask the lawyer. We ended up deciding not to use one, but that was based completely on our situation and it will differ from family to family.

• Finding the lawyer: Once we had a general idea of what we wanted to do with custody and financial considerations, we started asking friends of ours who they used to set up their wills. I called and interviewed the one that was most highly recommended. I asked her about her experience with special needs kids & with family wills. I found her easy to work with and very knowledgeable. She sent me a packet of information to fill out to ensure that we had all of the information we needed at our first meeting with her.

• Dealing with the emotions of making the will: Halfway through the first meeting with the lawyer, my husband stopped, looked me in the eye and told me that he never realized he was married to Stephen King. Yes, it is a very morbid experience to talk through the will. You need to go through scenarios that you have never thought about. For example “So, if I die, then he dies 36 hours later, whose will would take precedent? How is that different than if we die 12 hours apart?” (Yes, in our state there may be a different reading of the will depending on the time between deaths). The paperwork sent out ahead of time was hugely helpful to us in that meeting

• The cooling off period: After meeting with the lawyer the first time, she let us know that it would be a couple of weeks before she delivered the will. She purposely does that because the initial discussion always sparks things that families would like to have added. In our case, that did prove true. In between the initial meeting and the draft being delivered, my Nana passed away. In watching the activities that my family was going through, it reminded me of things that needed to be added and clarified. We ended up sending a couple of different modification

• After the will: As I write this, we are still in the process of getting the final draft of the will. We have already asked for multiple copies so that we can provide one to our financial advisor to put in his safe, one for each of the guardians and one for our files.

There was one additional activity that we did that was not included in the will in writing. We spoke to one of our favorite therapists and asked if we could give her name as the primary contact to the guardians in case something happened to us. She is a wonderful person and we know that if something should happen, she would be a great resource to introduce the guardians to Little Dude’s care team and get them up-to-date on the most recent treatments.

With all of this, I now have resorted back to hoping that we never need any of this since we will be around to watch the Little Dude grow into a Big Man.

Sunday, March 21, 2010

Changing people's mindsets about kids with special needs



I was sent a link to this beautiful video, and wanted to share. It's called "Mindsets" by The Friendship Circle program, and it's all about how kids and people with special needs could benefit if only people could toss out some of their preconceived ideas.

If only.

Saturday, March 20, 2010

It's Cerebral Palsy Awareness Day and hello, world, my child is not a tragedy



It's impossible to remember exactly what I thought of cerebral palsy before I had Max. I'm pretty sure I could only picture a person in a wheelchair, but I'm not sure. I didn't know anyone who had it. I had no idea it could be mild, and I certainly had no idea of the complications it could bring.

Then I had a child with cp.

The words "cerebral palsy" sound pretty awful, don't they? They literally mean weakness (palsy) having to do with the brain (cerebral). The condition is caused by an injury to the brain sometime around childbirth. Max lost oxygen during birth, which is what caused the brain damage and resulting cp. Here's a good description of what cerebral palsy means from The Centers for Disease Control, although geez, how old is the photo of that little girl?!

Having cp basically means your brain doesn't send the right signals to your muscles, so they can be messed up (to use the medical terminology). There are four kinds of cerebral palsy: spastic, athetoid, ataxic and mixed. Max has spastic four-quad cp (another lovely sounding term), so he has increased tightness in all four limbs, as well as his feet, torso and jaw.

I was shocked to discover just how much the cp messed with Max's ability to eat; the tongue, as it turns out, is one of the body's most hard-working muscles. Chewing and swallowing require all sorts of intricate movements that may not come easily to someone with cp. Max sure does love to eat, but food and liquid dribble out. The other main way cp affects him is that he has a fair amount of trouble using his hands. Manual dexterity is a challenge, particularly in his right hand (the brain damage is worse on the left side of his brain). His arms are tight, so swimming is not yet possible. And he cannot speak clearly, because of tongue challenges and because his brain isn't sending his mouth the right signals. He also has cognitive delays.

So there's all the crappy stuff, and then there's the reality of Max. He is a really bright kid who's well aware of what's happening in this world (and who never lets his little sister put one over on him). He likes to learn, and picks up things quickly. The cp hasn't prevented him from walking or riding a bike. The cp hasn't prevented him from playing with trucks, coloring, downing ice-cream or doing all the other stuff little kids love to do. The cp has not affected his incredible determination, his spirit, his sunny disposition, his sense of humor, his fantastic attitude. Max doesn't yet know he has cerebral palsy. Someday, he will, but I'm not concerned it will change his perspective on who he is.

If you don't have a child with disabilities, the cerebral palsy may seem like a tragedy to you. I'm here to say, it isn't. Do I wish he didn't have it? Of course I do. But do I wish that I didn't have a temper? Yes. Do I wish that Dave didn't have such trouble listening? Yeah. Do I wish that Sabrina was more patient? Yes. We all have our weaknesses, and while Max's may be more involved and more obvious, they're part of who he is.

Cerebral palsy has not defined his life.

Friday, March 19, 2010

Let's all enjoy our kids a little more, OK?



Today, I was looking through some old photos for a class project—Max's teacher is putting together a timeline of events in the kids' lives, to help them understand the passage of time—and I got all melancholy looking at Max's baby photos. I stared and stared at this one, and ached to go back in time and hold that chubster again. I did not appreciate Max's yumminess as much as I could have, because I was so caught up in my fears about his future. Would he walk? Would he talk? What would he be able to do?


I laughed when I saw this photo of Sabrina, at two and a half, because it is so hard to imagine she once let me dress her in getups like that. I obviously didn't worry about her the way I did about Max, but still, I feel like her toddlerhood passed all too quickly. I was caught up in a whirlwind of work and chores and a neverending to-do list.


I also found photos from our first trip to Disney Word two years ago. It is mind-boggling how much the kids have grown and changed since then.

As we head off tomorrow to Disney World for the second time, I am excited. For the fun, for the adventure, and because there is still plenty of cuteness left to savor.

I have some good stuff lined up for next week, including a really helpful (and moving) guest post by a mom who had to make some hard decisions planning for her son's future, a q & a with an inspiring twentysomething woman with cerebral palsy, and a roundup of great activities and printouts for kids I've recently found online. I tried to get Sabrina to do a guest post, but she refused, then told me to call her agent. George Clooney was also unavailable. Speaking of free, the winners of The Jimmies giveaway are Jennifer Thayer (DVD) and Mo and and Somer (CDs). I hope you and your kids enjoy!

Take care, everyone. And moms of little kids, promise me you'll try to worry less and savor your kids' cuteness more. Deal?

Thursday, March 18, 2010

Spring fever: What are you getting all excited about?



Major thanks for your candid responses to Monday's post about our having a third kid. Survey says, "Just do it!" Dave and I have a lot to talk about during our vacation next week. Given that we're going to Disney World, I am not sure how clearheaded our thinking will be. Today I asked Sabrina if she'd like a baby brother or sister. "I'd like a puppy," she said, definitively. Ooooooooo-kay, then.

It was gloriously beautiful outside today, total weather schizophrenia: There was a crazy storm this weekend and the unfinished part of our basement flooded. We spent most of Saturday night sopping up water with towels and exhausting our wet vac. (Do we know how to have a good time or what?) I let the kids have ice-cream twice today, I couldn't resist. Signs of spring are all around: the green shoots of daffodils sprouting in our backyard, the happy shouts of kids playing outside, Peeps (gotta get my hands on some purple ones), and the bright yellow flyer that arrived in the mail inviting us to opening day of the Little League Challenger Division, for kids with disabilities ages 5 to 18. There's contact info on the site, if you want to look into this.

Here's a video of Max in action last spring that some of you may recall; it made me so proud. And, no, Dave wasn't drunk when he shot it.

video


Photo by Metrix X

Wednesday, March 17, 2010

Wordless Wednesday




istock/carlush

Tuesday, March 16, 2010

Should we have a third kid?



OK, this may just be the post where you're going to think that I've lost it. Because I am opening this blog to a discussion about us having a third kid. For the record, this is not going to be like a reality show where you vote on what we should do and then we'll go and procreate...or not. OBVIOUSLY, this is a decision only we can make. But I'm throwing this out to the the wisdom of the web, and the thoughtful people who visit here, because I'm genuinely curious about your experiences and any deliberations you've already worked through. I'm interested to hear perspectives we may have not yet considered. As it is, I already grill every single mom I meet who has three kids.

We want to have a third child.
We're hesitant to.
We'll wait a few months.
No, we've already waited a few months.
But we're not quite ready.
But is anyone ever really ready?

I'll just lay out the main pros and cons in cold, hard type:

PROS
• Dave is an incredibly hands-on dad, so even though we'd be physically outnumbered we'd have two involved parents juggling three kids. Not such a bad ratio, considering.
• We can afford it, more or less. And if it ends up being "less," we'll deal. College, three square meals a day and clothes on your back are highly overrated.
• Another sibling to encourage Max. Sabrina's been a great influence: She's encouraged him to try to talk, to eat and drink on his own, to use the potty, to sing silly songs, to jump on the couch (that's something you welcome when your kid has physical challenges), to stand up for himself. I've written before about how when Sabrina annoyed Max when she was little, we'd be secretly pleased to see Max swat the pacifier right out of her mouth—an amazing display of dexterity for a kid who has such trouble using his hands.
• Another sibling to care for Max when Dave and I are not around. Sabrina already helps him a lot when she's not trying to maim him or put the blame on him for something. I feel this intense mix of joy and sorrow when I see her cover him with a blanket because he can't quite grasp it, or when he trips and she rushes over to pick him up, or when she talks for him, or when he gets upset and she pats his back and says the only three words that bring him comfort: "Max loves purple!" Seeing her with him is a reminder of the care that Max needs, a reminder that Sabrina is going to be there for him alone unless there's another sibling to help. Although who knows, said sibling could turn out to be a jerk or a free spirit who wants to backpack in Nepal and have nothing to do with Max. It's a crap shoot. I guess it all is.
• Another baby: yum. We've made some pretty cute kids so far. I am personally not looking forward to the teen years, but I am sure that by then there will be an app for managing teens.
• I don't want to be 70 years old and regret not having another child.

CONS
• Another child will mean less attention for each child...especially for Max. And he needs as much of our attention as he can get. As it is, I feel guilty about all the stuff that I could be doing for him but don't get to often enough. Another child will mean even less time for programming Max's speech device, doing therapeutic play with him, massaging his limbs, and the countless other responsibilities I have as a parent of a child with cerebral palsy.
• It's hard to imagine going back to the infant days (make that infant daze), although when I was recently talking with my ob/gyn about this she said to me, not unkindly, "You're not completely out of the baby stage." She's right. Max still requires certain help.
• I'm worried about handling three kids on my own. When I go to a busy place with Max and Sabrina, like Target or our town center, I need to hold Max's hand at all times; sometimes, he darts away and I have to run after him. How would I juggle him, Sabrina and a baby? I know, the baby would eventually grow more independent and hopefully Max will, too, but when I picture the four of us making our way down the street, it terrifies me. Even though the baby is really cute-looking.
• I like having a life, or at least some sliver of one. There, I said it. Another kid would mean less time to enjoy Dave, have a hobby (coming soon!), read, write, think, savor.
• Of course, we could adopt; there are so many children out there who need a home. The world is already overpopulated, and we're draining our natural resources. An environmental activist I know once described a third kid as a "Hummer," and I've never forgotten it.

Whew. Just getting that out has been helpful. But still, I want to hear: If you were us, would you have that third child?

Photo by Robin Keefe

Monday, March 15, 2010

Sablog: a "blog" by Sabrina, age 5



So, where did you go with Daddy the other week that was special?

Sabrina: "Um, go skiing."

And did you like it?

Sabrina: "I'm not talking about it."

Why not? Sabrina? Sabrina?

Sabrina: "My socks are falling down."

OK, I'll fix them.

Sabrina: "I want to talk about something else! Let's talk about Max."

OK, what do you want to say?

Sabrina: "Max likes purple!"

I know! And what else does Max like?

Sabrina: "Max's hat is purple! Max has purple shoes!"

Do you want purple shoes?

Sabrina: "I want blue!"

Who's your favorite brother?

Sabrina: "Max."

And why do you love him so much?

Sabrina: "Because he's my brother. I want to write!"

Ok, write!

[And these are the first words Sabrina's ever typed about her brother.]

i love max
max is 7
max is a happy boy
max go to school
max loves sabrina

Saturday, March 13, 2010

Dealing with insurance companies: share the good, the bad, the ugly



I recently learned about a mom of three, Brandy from Not So Average Mama, who is desperate to see a neurologist. She's been experiencing scary symptoms—stuttering, head jerks, pain—and cannot visit a doctor because she and her husband are self-employed with no medical coverage. Brandy's entered a slideshow of hers in an Intel contest where the winner gets $5000; here's the place where you can vote.

I get distressed when I hear these kinds of stories; our country sure can make it hell-ish to get insurance coverage, and I'm eager to see what happens with health care reform in the upcoming months. I feel lucky that we have good insurance. I'm also glad that I have a big mouth when it comes to getting things for Max, as it's come in handy for fighting the insurance company to pay for his therapies. I ended up in a deadlock with them over occupational therapy, but they finally gave in on speech. Here's my victory post, along with some tips on dealing with stubborn insurance companies (I guess that would be all insurance companies these days). Oh and can I just say, our co-pay has risen astronomically in the last couple of years?

What sort of experiences have you guys been having with insurance companies lately?

iStockphoto

Friday, March 12, 2010

Kid goodies giveaway: a DVD and CD that rock

video

Here's Max using cymbals in both hands for the very first time. His inspiration: The Trying Funny Stuff DVD by The Jimmies. That's them playing in the background (squealing sound effects provided by me). The Jimmies are geared toward kids but let me just say, their music is totally enjoyable for grownups—compelling, creative and a whole lot of fun. And their videos are a riot.

Ashley Albert, the lead singer, has kindly offered to give away one DVD and two CDs. So leave a comment below about what kind of stuff music moves your kids to do, and I'll randomly pick three winners by next Thursday, 3/18, and announce them the following day.

Max's fave Jimmies video is "Spanimals," I'm partial to "Bedhead" (and Ashley, doll, your bedhead is nothing compared to my bedhead in the morning). You can see both videos here.

Thursday, March 11, 2010

Morgan's Wonderland: why it's such a big deal



There's been a lot of buzz on the web about San Antonio's Morgan's Wonderland, the first large theme park to cater to kids with special needs. Dave e-mailed me about it from London. He's there on a business trip and had seen it on the news.

The story's amazing: A real estate developer with a daughter who has special needs raised some $30 million to open the park. It has wide ramps for wheelchairs, a carousel with adaptive seating, and a sensory village where kids can interact with lights, colors, sounds and textures. It's even going to limit the number of visitors so as not to overwhelm kids. Admission is free for those with disabilities and $5 for friends and family. The Grand Opening is April 10.

I was psyched to hear about Morgan's Wonderland, but all the hoopla has left me vaguely troubled. Because if adapting places to kids with special needs were more of a regular thing, a park like this wouldn't be making international headlines. Morgan's Wonderland is a big deal not just because its the first of its kind but because this concept seems so novel to people. Wow! Lots and lots of opportunities for kids with special needs to enjoy themselves, as opposed to the slim pickings available at mainstream parks.

The topic's totally on my mind. We're headed to Disney at the end of next week, a place that is considered exceptionally accommodating to kids with special needs. Last time we went, though, we were limited by the number of rides we could go on because they scared the hell out of Max. Make that, we were limited to the race track. Everything else was sensory overload. I made the mistake of dragging him onto It's A Small World since I thought he'd get into it only he wailed the entire time as the robo-children in adorable outfits sang their hearts out. Max will probably run screaming down the Disney streets at the mere sight of it.

Morgan's Wonderland deserves all of the attention it's receiving. I just wish that the Chuck E. Cheeses and Great Adventures and water parks and all the other mainstream kiddie fun places of this world did more to include kids with disabilities, you know?

Wednesday, March 10, 2010

Tales of an imposter cook. Plus, can you guess the celeb next to me?



I'm not sure if I've ever told you guys this but I am not big on cooking. I guess I could blame my mom, who was known to put cottage cheese and whole wheat bread on the table and consider it DIY dinner, but the truth is I'd rather spend my time doing other things with the kids. I do like baking, and on weekends I'll make the occasional stir fry, but I am not that mom who whips up dinner for the kids every single night. I am that mom who orders pizza or gets takeout or nukes frozen stuff. I am that mom who says, "Honey, wanna go out?"

So I got a little nervous when I was invited to a Ragu event in New York and they asked us to bring a recipe involving a Ragu product. Because my favorite recipe involving a Ragu product is boil pasta, dump on sauce. That didn't seem all that impressive, so I started searching the web and found an interesting turkey chili recipe from Cook's involving sauce but then I decided against plagiarism and instead begged our babysitter to come up with a recipe and she said, "How about pasta wheels with sauce?" at which point I gave up.

The afternoon was really fun and nobody made me hand over a recipe, phew. Any event where you get to eat lasagna for lunch is a good event, in my book. I learned that Ragu has a full serving of veggies in every half cup of sauce, which was heartening to hear because my kids down so much of Ragu Organic it probably runs in their veins.


Doesn't this column look cool? It might be a fun weekend project to make the kids redecorate our kitchen in pasta.

Then I got all nervous again because after lunch one activity was to cook with a Ragu test kitchen chef and I was all, "Uh-oh, they are for sure going to find out I can't cook and toss me out like a limp noodle." But here's the best part: We made No Boiling Lasagna. I know, it's not like lasagna is complicated but this one was ridiculously easy because you don't have to cook the noodles.

I partnered with the very sweet Nirasha from Mommy Niri. I mixed, she assembled. I am sure I impressed her with my mixing abilities. When the chef asked us to add the final layer sauce, I dumped almost the whole jar on and she said, "Oh, that's a lot of sauce!" but aside from that I think I pretty much convinced her that I just might be the next Rachael Ray.


The highlight of the day, aside from realizing I am amazingly talented at making lasagna for dummies, was getting to hear this celeb talk about feeding her kids healthy food. Can you guess who it is? I pretty much rendered her speechless with my culinary skills.

Word, Ragu is holding a Recipe for a Good Start contest now through March 31. Just submit an original, non-plagiarized recipe involving Ragu sauce and a little blurb with your tips for giving kids a good start in life; the grand prize winner gets a $5000 scholarship for his or her kid.

All in all, it was an interesting event and I loved that they donated the lasagnas we made to food pantries; hopefully mine and Niri's went to someone who likes extra sauce. I also enjoyed chatting with bona fide foodie Vanessa from Chefdruck Musings and the dynamic Colleen from Classy Mommy.

So, are you guys good cooks? And if so, do you deliver?

Requisite note: I received a bag from Ragu at the event with pasta, sauce and a cooking dish but no personal chef was in there, just so you know. All opinions here are my own. No pasta was harmed in the writing of this post.

Tuesday, March 9, 2010

Would it be wrong to offer up your five-year-old as a giveaway?



I'm leaving a message for a doctor's secretary: "Hi, this is Max's mom, I need to change his appointment, can you call me?"

As I hang up Sabrina, who's sitting nearby, says, "Why do you always say you're Max's mom and not Sabrina's mom?"

I explain to her it's because I'm calling about a doctor's appointment for Max, and she seems to understand. In the next few minutes, though, Sabrina starts going through my purse, finds my wallet, and notices that Max's photo is on top of the stack in the plastic sleeve. She rearranges them so her pic is first.

Then came the note above. She asked me how to spell it and wrote it out; you have to read it like one of those word-sort puzzles. It says, "Max not going in my room."

Sabrina seems to be more and more resentful lately of the extra attention Max gets. I go to great lengths to make sure I spend enough time with each of them. But Max needs help being fed, dressed and bathed. I have to explain certain things to him again and again. And approximately every five minute, when he looks at me with an expectant grin on his face, it's my duty to say, "You're Purple Max!" So, yes, he gets more attention.

I think this is why Sabrina's been acting rather obnoxiously. She's taken to crashing Max's therapy sessions, making it hard for him to concentrate.


She's also been snatching Max's clothes. Not that she's ever been the easiest kid about dressing. For her class photo, she insisted on wearing a shirt that says, in sequins (half of which have fallen off), "Black is the new pink." She definitely stands out in the photo, that much I'll say.

Sadly, she's also been kind of mean to Max. Today she got mad at him and said, "Max, you don't like PURPLE! You only like BLACK!" OK, I guess that's not the meanest thing you could hurl at someone, but it upset Max, who vehemently shook his head no and said, "Ur-ul Max! Ur-ul Max!"

Tomorrow Max has to go to the doctor to get his ears checked (there's some fluid in one) and tonight I overheard Sabrina telling him, "Max, you're going to get a shot at the doctor tomorrow! In your face!"

She has been rather obnoxious to me, too, dragging her heels on doing things that I ask. Once, she called me a "brat." And she used the police threat again this weekend; when I told her she could not have ice-cream she said, "If you don't let me have ice-cream, I am telling the police!" She didn't specify what charges she would press against me, though I don't think failure to provide ice-cream is a punishable offense.

I have decided to kill her with kindness.


I started a Sabrina wall above my desk featuring her artwork and photos.

I sometimes put her to bed before Max, so we can have time to read books alone.

Thursday, we're going to the circus together.

I know, I need patience and understanding. I don't really have any plans to offer up Sabrina as a giveaway, because I don't think that complies with the new FTC guidelines for bloggers. But sometimes, I sure am tempted.

Monday, March 8, 2010

Are you happy with your child's program/school?



Max's school had a benefit gala on Friday, Casino Night. I had an amazing time, and not just because it was in a beautiful place and Dave and I dressed up and there was an open bar (hello, whiskey sours) and I got two blackjacks and also won a mini DVD. I just felt really happy knowing Max was in a school that's able to get this sort of thing together.

Max was in our state's Early Intervention program until he was three, and it spoiled us because we had three experienced therapists (physical, occupational, speech) coming to the house, along with a teacher in his last year in EI. When he aged out our district wasn't able to support Max's needs, so they bused him to a private school about 20 minutes away. I had picked that school after touring several, and decided it was the right place for Max because it seemed like a nurturing environment, the teachers were good and there were kids there just like Max. It was important to me that Max be in a setting with kids who were more advanced than he was (to give him aspirations) and kids who were less advanced (you know, to give him a superiority complex).

But here's what happened with that school: It was nurturing, yes. But turns out it was so not progressive or proactive. It was located down the block from a place where Max used to get aquatic therapy, and when I asked about the possibility of including aquatic therapy in his school program I was told the principal did not believe in aquatic therapy. Then came the communication device showdown. Max was 4. I told his speech therapist (who was the head of the department) that I thought he was ready for one. She said he wasn't. I asked her how she knew he wasn't if she'd never even tried one with him. Then I found out that the United Cerebral Palsy in our area had a lending library of them. "Wow, that's great!" she said when I told her, which is exactly what you don't want to hear from the so-called expert. Finally, I threatened to pull him out of the school if they didn't get him tested for a communication device, but really, by then it was too late. I was fed up with their retro ways; it seemed like they were actually holding Max back.

The new school that we found for Max is farther away, but it is outstanding. The teachers are totally on top of everything and caring, the therapists are enthusiastic and full of great tips, and they have excellent activities for families throughout the year.

I'd say if there's one key thing I've learned from seven years of working with special needs programs, it's this: Ask for more. Me, I wanted to give Max more than just a chance to beat the odds—I wanted to give him a million chances. I wanted to get him all the help and tools and guidance I could humanly get. I wanted those naysaying doctors at the hospital where he was born to eat Max's dust. So when Max was in EI, I asked for more sessions and eventually, I got them. I asked the insurance company to pay for more therapies and I kept badgering them until they met me halfway. At school, I've asked for more feedback: I asked his therapists to e-mail me each week about what they've been working on with Max and what I could be doing at home. And I asked his teacher to send home a list of activities she does in class so I can reinforce them at home, and now she sends a weekly "Learning Links" memo to all parents. OK, I can't say I do everything, but I do what I can.

How about you—are you happy with your child's Early Intervention program or school experience? What frustrates you? What important thing have you learned along the way?

Sunday, March 7, 2010

Mom fantasy #9358: a good night's sleep


This photo is from The World's Biggest Bed Jump in May 2009. It was held in London (shown here) and in Shanghai, Paris and New York. This is pretty much how sleeping in our bed feels when the kids are there with us—like there are way too many people.

OK, the winners of the Cloud B Twilight Turtle are Casey, who will no longer have to leave the closet lights on for her kids, and Hippie4ever, whose son will maybe now be inclined to quit cosleeping.


I wish both you and your children a good night's sleep! Thanks again to Cloud B for this giveaway. You can still get 15 percent off Cloud B products through March 18 by using the code MAX-0210. Wow, Max is a discount code.

So, how much sleep do you guys get? I usually crash at around 12:30 (yes, I'm a night owl, but also because I just need time to get it all done) and wake up at around 7 with the kids, but what I really need is seven and a half hours. I get that on the weekends but mostly, I'm indebted to coffee.

And you?

Saturday, March 6, 2010

On alternatives to the r-word



The ever-wise Annie from PhD in Parenting had such a fantastic response to this week's post on Spread The Word To End The Word day that it deserves its own post. Annie was answering a commenter's question about how replacing the r-word with another would help (and if you haven't yet taken the r-word pledge, go to it). Here's what Annie had to say:

The reason we need to get rid of the word retarded is that it is habitually used to make a derogatory remark about a person with an intellectual disability or is used to compare someone without an intellectual disability to someone with an intellectual disability in a derogatory fashion. The entire derogatory connotation behind the way the word is used in almost all contexts is the reason we need to get rid of it.

But what to replace it with? I think that depends on the context:

1) If you are using it as a descriptor for a person with an intellectual disability but in a context where no such descriptor is necessary (e.g. "Johnny, get out of the way, it's the retarded kid's turn to go down the slide") it should be replaced with another descriptor that doesn't reference the child's disability at all (e.g. "Johnny, get out of the way, it's the kid in the blue jacket's turn to go down the slide").

2) If you are using it as a descriptor for a person with an intellectual disability in a context where such a descriptor is necessary (e.g. explaining to a teacher's aide that "Jenny gets an extra 30 minutes to do her exam because she's retarded"), you could replace it with a term that does not have the same derogatory connotation (e.g. "Jenny gets an extra 30 minutes to do her exam because she has [an intellectual disability, a learning disability, or the name of the actual disability if relevant - e.g. dislexia, down's syndrome]"). For this, the Canadian government has a great publication called "A Way With Words and Images" and it includes an annex with the appropriate terminology to use to describe people with disabilities:

3) If you are using the word to insult yourself ("I'm so retarded"), choose words that are more descriptive e.g. "I lost track of time" or "I'm so forgetful" or "It's my fault. I'm sorry."

4) If you are using it to attack someone else's ideas or actions (e.g. "That was a retarded thing to say/do") then be more specific. Say "That doesn't make sense" or "You are going to regret that" or "That was an uninformed statement" or "Your arrogant/ignorant/baseless/feeble arguments are making me ill."

5) If you are using it to insult someone (e.g. "You're such a retard") then don't. Period. What do you have to gain by insulting someone else? If you really feel like someone is deserving of an insult, then at least use a non-ableist, non-bigoted one. There is a list here.

Rather than using "retard/retarded" as a catch-all and dumping people with special needs into a pot with the true ignorant jerks of the world, I think it is worth taking some time to think about what you really want to say and how to best say it.

Bravo, Annie.

Thursday, March 4, 2010

Lost hugs, found kisses



It's 7 a.m. and I'm lying in bed, sleepy-eyed. Max is snuggled into the crook of my right arm, watching Mickey Mouse Clubhouse. It's become our little morning ritual, just the two of us. Dave is showering and Sabrina is downstairs watching Spongebob Squarepants because she thinks she is far too mature for Mickey Mouse Clubhouse.

I practically have to bribe Sabrina to get kisses, but Max is such a snugglebunny. Whenever I walk in the door after being away he lets out a squeal, runs to me and presses himself against my knees, wanting me to pick him up. Once I do, he nestles his head on my shoulder, opens his mouth and plants it onto my neck. Then he breathes in and out deeply, like he is trying to inhale me. It is the most heavenly feeling.

Max took a long time to learn how to kiss. He still can't do it with pursed lips; all of his kisses are of the open-mouthed, slurpy variety. They leave a big wet mark on my cheek that I don't always bother to wipe off.

As kissy as Max can be, he has never hugged me. It's just not in his repertoire of movements; the cerebral palsy keeps his arms close to his sides most of the time. Yet I don't feel like I'm missing out, or that I've been deprived of some primal parental right. I didn't even realize until recently that Max had never hugged me. Then one night, when I leaned down to kiss him good night, he flung one arm over my back and it occurred to me that was as close of a hug as I'd ever had from him.

If you'd told me when Max was a baby that he would not be able to hug me, I would have been despondent. A child? Who cannot hug his mother? But the lack of hugs are yet another thing I've never had regrets about because there has been so much else to take their place.

Our children love us up any way they can, whether or not they're able to wrap their arms around us or say the words "I love you."

I may not get hugs, but I do have squeals of joy when I walk in the door.

I have that light in Max's eyes when he sees me.

I have lots and lots and lots of slurpy kisses.

I have a little boy who loves to snuggle with me.

And that is all I need.

Wednesday, March 3, 2010

Max has a sophisticated new use for his speech device

video

So, Max's speech therapist at school programmed a fart sound into his Dynavox‚ just in case you couldn't tell what that noise was in this video. Max thinks farts are really funny...just like any other 7-year-old boy. The only troubling thing is how awed my husband is by this. I didn't manage to record the part where Dave said, "YEAH! MAX!", as if making your speech communication device spew gastrointestinal noises is some huge milestone.

Do men ever outgrow toilet humor?!

Tuesday, March 2, 2010

One of the most awful words on the planet



Tonight, I was on my TweetDeck (that thing is addictive) and I spotted this tweet from a random teen: "Video chatting with girl who should be tested for special needs is tiring." I twittered, "DUDE. I'm parent of a kid w/special needs. NOT funny." His next tweet: "Omg I have just been tweeted at by an angry parent of a special needs child for referring to regan as a retard. She isn't really retarded!"

Um, dude? That was even more offensive.

I told him that tomorrow is actually national anti r-word day. Specifically, it's the second annual "Spread The Word To End The Word" day, a national campaign created by kids who participated in the 2009 Special Olympics Global Youth Activation Summit. The goal: to get people to stop and think about the hurtful and disparaging use of the word "retard." People can take a pledge to not use the r-word anymore.

Clearly, if my exchange with Twitter boy is any indication, we have a ways to go.

I've had to make a definite effort to erase the r-word from my vocabulary, a word that was no big deal when I was growing up. I've written before about how some other kids and I would chant the word "Retard! Retard!" at a boy who was slow, something that haunts me to this day. As an adult, I've caught myself saying "That's retarded!" a few times, even after I had Max. Yet with the increasing awareness about banishing the r-word, I have become acutely aware of not using it. It is completely and utterly demeaning toward people with intellectual disabilities. As a mom of a kid with special needs, I can say with certainty that it would pain me if someone ever described Max as a "retard."

There's been a recent backlash against the word. Sarah Palin slammed White House Chief of Staff Rahm Emanuel for describing health care opposition as "retarded." On Twitter this past week (I know, I need to get a non-Twitter life) there was a round of retweets about some woman who was supposedly using the word "'tard" to describe kids with special needs. Nice, huh?!

Have you heard people using that word?

Stem cell therapy: Has it helped Max?



"If it couldn't hurt and it might help, we'll try it." That's pretty much been our motto since Max's birth, and it's why we did stem cell therapy back in August. As far as we could tell, it wasn't going to harm Max, and there was potential for it to do some good. So we got the infusion at Duke with with Dr. Joanne Kurtzberg, using stem cells from cord blood we'd banked at Max's birth. We only had enough for one shot.

Lately, some of you have been asking whether the progress we've seen in Max is from the stem cells. My answer is, I don't know. Nobody does. Duke didn't do an MRI before the infusion or request a comparative one after, since conventional MRIs aren't sensitive enough to show differences in the brain of a child with cp. However, I've heard Duke is going to be doing another study where they'll be trying out a new type of MRI that is more sensitive.

We've hit the six-month mark, the time when changes might kick in, although they can also show up before...or not at all. In recent months, I've seen small but marked improvements in Max. He is more spontaneously using both hands. He is trying to speak more words. His overall cognition seems improved—he's always been alert, but now he seems even more so. I have not found any data that stem cell therapy can trigger an obsession with the color purple.

As Dr. K says, "I'm glad Max continues to improve, for whatever the reason."

Exactly.

Here's a recent CBS video about a newborn who got an infusion at Duke University. I continue to have tremendous hopes for the potential of stem cell therapy to help our children, and the groundbreaking work Dr. Kurtzberg is doing.


Monday, March 1, 2010

Dubiously sane things I have done concerning Max...perhaps you can relate?



I was e-mailing with a mom over the weekend; her baby had a stroke at birth, like Max. Until recently, she had measured her baby's head every three days because she worried about microcephaly, a condition in which a head is abnormally small (it indicates the brain isn't developing properly). She joked about getting committed to the psych ward, and I knew just how she felt because I've done that.

For the first year of Max's life, I was obsessed with his head size. It was small, very small. Still is. I'd regularly measure it and dread visits to the neurologist. When Max needed winter hats, I'd buy two sizes: one in the age-appropriate size, one in infant size. Inevitably, only the infant hat would fit, even when he was three. But I kept buying the age-appropriate size hat, as if I could will his poor, sweet little head to fit into it. At some point I finally quit freaking about Max's head size—as long as he made good progress, I decided, that was all that mattered. And he has, thankyouGod, he has.

Over the years, I have done some wacky stuff related to Max, driven by anxiety, fear, terror, love. For the first few weeks after Max was home from the NICU, I slept on our living room couch with him resting on my chest. Literally. I felt I needed to be that close to him to make sure he was still breathing. I can still vividly recall the day my boss at the time called to check in on me. At some point, I mentioned that Max was sleeping on my chest every night. Awkward pause. "Oh! Is that safe?" she asked, logically. I must have seemed so strange.

I have also reached into Max's crib as he slept to massage his hands in the hopes of loosening them from the tight grip of cerebral palsy, stared obsessively at other kids' hands in the mall to see just how open/functional they were in comparison, spoken to Max in different accents to see if he'd notice and, once in a fit of desperation, ate an entire jar of baby food (bananas) to show him how to chew right. Dave has been my partner in special needs lunacy; when Max was little, he used to gargle water to distract Max while we were feeding him so I could get in some food.

OK, here it is, your chance to share the out-there things you've done. That way, they can haul us off all at once to the loony bin!

Hahahahahahahahahahahahahahahahahahahahahaha!!!!!!!!!!!!!!!!

istock/Dennis Cox


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