Tuesday, June 30, 2009

Welcome to a mommy blogger carnival!



Step right up and try to knock down a mom blogger with a squirt gun!

Ha, ha, this isn't that type of carnival. This is a blogging event that happens every two weeks; the host blogger collects posts from other mom bloggers, the favorite ones they've written in the last four weeks (one apiece). Then she compiles them all into one handy post and, well, here we are! I first found out about the Best of The Mommy Bloggers carnival on A Modern Mother, and thought it would be an interesting thing to do.

As the saying goes, it's my carnival and I'll post if I want to (or something like that), so I'll start with my proudest moment in the last few weeks: A Bill of Rights For Parents of Kids With Special Needs. Now, onto all of you:

• Chloe over at Son Time Now: A Boys Toys Blog has lots of helpful ideas for getting rid of unwanted toys.
• I dare you not to relate to this sweet post about missing the sound of silence from Sam at Mum's the Boss.
• This rambling, rambunctious post by Laura at Wife of Bold has a moment of "I can't believe my child said that" you will never forget.
• Need ideas for toys to take on long trips? Victoria's got great ones!
• Kate writes honestly and movingly about her fears for her son's future.
• Sandy recalls loving memories of Elvis and Johnny Cash at Baby Baby.
Do you love what you do? That's the provocative question Antonia Chitty raises at Family Friendly Working.
• Carol at New Mummy gushes about her seven-month-old's accomplishments.
• Mom-to-be Lyla from Globetrotting Bride has absolutely adorable photos of her wedding rings perched on random outdoor objects—my favorite is them atop a cactus.
• And over at Elizabeth Ann, Angi has a powerful post about refusing to accept there is no cure for her daughter's physical disabilities.


Photo by Erica Dorian

Monday, June 29, 2009

Monday Morning Confessional



It's been awhile since I've done one of these—you know, because I've been so good. But I've got a few things to get off my chest:

* On Sunday, Max's diet consisted of: one jelly donut, one mini chocolate donut, chocolate ice-cream, one half of a pickle, apple juice, a baked potato with sour cream and one half of a jelly donut. This sounds like The Very Hungry Caterpillar, doesn't it?

* My diet wasn't that much better.

* This week I told the kids I couldn't find the Madagascar DVD because I couldn't bear to watch that damn movie one more time.

* Max has been saying "Daddy" for a while now. I've been happy about that...and jealous. When he finally came out with a really clear "Mommy" the other week, I was ecstatic.

* My sister's having a baby in September (a girl!); my good friend Lyla's baby (another girl!) is due soon after. Whenever I see either one of them, I desperately miss being pregnant. Is that strange? I loved pregnancy.

* I often eavesdrop when Sabrina has conversations with other kids because I am so continuously fascinated by her ability to talk.

* I still haven't gotten around to getting prints of our Disney cruise photos made for the kids. Ah, photo guilt.

* I shot the sheriff, but I did not shoot the deputy.

Got anything you'd like to confess?

Update: A few months ago, I signed up to host a Best of the Mommy Bloggers carnival. Well, it's tomorrow! Send me a favorite post you've written in the last four weeks—zap it to LoveThatMax@gmail.com. I'll gather them and run them tomorrow. Bring 'em on!


Photo by Gregory Pleau

Saturday, June 27, 2009

Helping other kids understand your child



An old friend from high school told me about this video, "Take A Walk In Someone Else's Shoes." It's a sweet song about teaching kids acceptance. Her friend Marlowe is one of the moms in the Swingset Mamas; her daughter has autism.

Spread the love!

Friday, June 26, 2009

Random things that did Max good this week

What a strange day yesterday—first poor Farrah, then Michael Jackson. I grew up listening to his music, and have felt sad about his death. I feel awful for his three kids, too. (Though maybe they can change their names now?)

Max has been having a great week. He goes to school year-round but he's on break now and has been having all sorts of fun. I discovered a few new things this week that were helpful to him:

1. This book


Max has had a few of the "Snappy" series of pop-up books for years and still likes to look at them from time to time. The other night, we were reading Snappy Little Dinosaurs and he grabbed the book and started flapping the covers back and forth to make the pop-ups go up and down. Awesome use of his hands! Last year at this time, I don't think he could have done that.

2. This televangelist

Tuesday morning, I turned on the TV for Max to watch so I could take a shower (Sabrina was downstairs with Dave). The TV was tuned to a channel where "Changing Your World" was playing, with Creflo A. Dollar preaching to a crowd. (I'd never heard of the guy before, had to look him up.) I went to switch channels to Mickey Mouse Clubhouse. "Nooooooooooo," said Max, and grabbed the remote. Max was fascinated by this guy, most likely because he is so amazingly animated. Max has watched "Changing Your World" every morning since. I figure this is a fine thing, maybe he'll pick up some words. Though I'll have to put my foot down if Max wants to send him money.

3. This hat

Our babysitter took Max to the local firehouse on Thursday morning, where Max got a grand tour and a "Fire Chief" hat. Max was beyond excited. As you know, he loves trucks, particularly fire engines. It reminded me that it's often the simple pleasures that kids enjoy most.

What made your child happy this week?

Thursday, June 25, 2009

Were we really meant to have kids with special needs?



The other day, Live to Love and Laugh (sorry, I only know your screen name!) wrote, in response to my post about Max running over my begonias, "God only gives 'special' children to special parents He knows will love them. He trusts you!"

This is something I heard a fair amount of times after Max was born. That and, "Ellen, if anyone can handle this, you can." I was both despondent and angry that my baby had a stroke, and felt that people were saying these things just to make me feel better. Eventually, I started having raging debates inside my head on the topic. They went something like this:

Me: I'm a person who's always loved children. Why am I the one who ends up with a child who will probably have significant disabilities?
Me: That's right—I love children. I will love this child no matter what. He needs me. And I have lots and lots of experience with kids. Maybe this is why I got a child who is going to have special needs.
Me: But I am not a person with vast amounts of patience. I am, however, a person who likes to control things. This situation is out of my control. Nothing makes sense. I am not cut out to do this.
Me: OMG, he is so delicious. I don't care about why this happened. I am just going to focus on helping him however I can.
Me: Why did this happen?

And so on and so on.

As I got to know more parents of kids with special needs, I was not convinced that all of them were meant to have their children. As "Anonymous" said in her comment on the begonias post:

"Having 18 years experience as a parent of special needs children, I respectfully have to disagree with the statement that God only gives special children to special parents who will love them. I wish it was true, just as we all wish ALL children were given just to parents that will love them. I've seen many special needs children who are neglected or you can not get their parents involved or even attending IEP meetings. Children go further with involved parents! I know of many people with disabilities that have appointed guardians because their parent stole what little funds they got monthly, from them. Sometimes I think special children should be given to smart parents. Then we could figure out all the medical terminology or abbreviations thrown at us, work with the professionals and always know what is best for our child!"

Here's where I stand: I am a good mom to Max. That much, I know. But I do not feel that I am special, in particular. I know so many amazing moms. I believe I was meant to have my Max whether or not he was destined to have disabilities.

I have a feeling a lot of you have thought about this topic. Share your thoughts?

Wednesday, June 24, 2009

Swine flu: Is it happening near you?



A friend recently forwarded me this photo with the message, "To avoid the swine flu, don't do this!"

Funny. Not so funny: I know a couple of people who've had it. When Max had a sore throat and fever the other week, they wouldn't let him back into school without a note confirming that he didn't have swine flu. Our pediatrician isn't doing the test, so we had to take Max to a Quest lab, who managed to mess up the blood draw (ARGH!). Next day, we took him to a walk-in clinic at a local drugstore, where they confirmed he was flu-free.

Any flu you get now is going to be swine flu. In case you're wondering, one friend who had it told me that her symptoms were bad headache, feeling like she was hung over, moderate favor, sniffles, runny nose. Here's a helpful video from the Centers for Disease Control.

Friends have asked me if Max is more susceptible to swine flu. He's not; he may have CP, but he has no immune system issues. I hope none of your kids do, either.

What's the word in your area? Do you know anyone who's had swine flu?

Tuesday, June 23, 2009

The great begonia massacre of 2009 and other theories of chaos


Max ran over my pink begonias with his Push Around Buggy. Every. Single. Last. One.

OK, I do not mean to sound like the most mind-boggling ingrate on the planet. It is amazing—no, miraculous—that my little boy with cerebral palsy is able navigate a car around. It's true, too, that Max isn't yet cognitively aware enough to realize that you shouldn't roll over Mommy's flowers with your Step 2 Buggy (not that any kid with a brat streak couldn't have done the same). And, relax, I'm not going to revoke Max's driving privileges or anything.

But: I loved that row of bright little flowers that lined the walkway to our front door. Every morning, I'd wake up and stare at them out the window before I hit the shower. When I came home from work at night, I looked forward to seeing them.

I'll do anything for Max. I'm not selfless, though. Just because I have a child with special needs doesn't mean that I have to stop caring about my own needs and the little things that make me happy.

Sometimes, I feel like people think parents of kids with handicaps are saints or something.

For the record, I am no saint.

Now, anyone know how to revive begonias?


Drive with caution

Monday, June 22, 2009

Fun times and adaptive parenting



First off, the five winners of the $20 Subway vouchers are:

Colleen, Kiera Beth, Erin, Anonymous (commenter #6) and KathsMom. Congrats, and happy sub-ing! E-mail me at LoveThatMax@gmail.com and I will forward your info on to the lovely Subway Lady, who will be in touch.

This weekend, we road-tripped to The Crayola Factory in Easton, Pennsylvania. We'd been meaning to go for a long time, and when it rained on Saturday, off we went.

En route, we stopped at a diner. Max was grouchy and didn't want to eat lunch. We were in the back in a corner booth, with nobody around us, so I let him sit on the table—he could look out the window and watch cars going by— and fed him that way.

It got me thinking about adaptive parenting. When you have a kid with disabilities, you end up getting lots of adaptive equipment. Over the years we've had adaptive toys, an adaptive stroller, adaptive tricycle equipment, adaptive spoons, you name it. But perhaps the most helpful thing has been adaptive parenting.

Adaptive parenting means forgetting about the normal or typical way of doing things and adapting your parenting—and mindset— to the realities of your child. It's like going on a trip where you hit major traffic so you keep punching the navigator's "detour" button to find alternate routes. Same goes with parenting a kid with special needs: you're always finding other ways.

Our day at Crayola was all about adapting. Max started wailing when we walked into the lobby because of the din, so I asked a woman at the counter if she could let us pay for our tickets a.s.a.p. and whisk him inside. She did.

There were a ton of coloring and craft stations set up everywhere. Sabrina was in heaven.



I wished Max would sit down and make something, but that's not his cup of tea. Adapt!

I grabbed him and we went to The Canal Museum, an exhibit on the third floor, where Max floated boats through canals. He was fascinated.



Eventually, he got bolder and wandered around. He and Sabrina watched a model train.



He crawled through a tunnel.



Then he asked to go back to the canals.



He was also enchanted by the room-size elevator, and so we rode up and down that a bunch. He had a great day.

It's all about adapting, isn't it?

Saturday, June 20, 2009

Dear Daddy



Dear Daddy,

This is Max and Sabrina. Yipppeee! We have finally figured out how to work the computer, and we hope you don't mind but we just ordered all of the toys at ToysRUs.com, it is a good thing you have your credit card information saved!

Will you help us unpack them when they arrive and hide them from Mommy?

We think you are the best daddy on the planet, and not just because we have you wrapped around our little fingers.

Since the day we were born, you have been there for us.

You let us sleep in your bed.

You taught us how to snore. Or maybe we just inherited that, we're not sure.

You let us climb all over you in bed in the morning.

You let us watch TV in bed and we don't mind that you are really just doing that so you can sleep a little more.

You dress us. Sometimes backwards, but hey, we don't care, and Mommy is silly because she does.

You make us pancakes with lots of syrup.

You play with us.

You teach us how to play tennis, baseball and lots of stuff we never knew before.

You drive us to gym class and Little League on weekends.

You show us how you can burp many times in a row. Mommy says that's not a good thing, but Mommy is silly!

You swing us on the swing.

You toss us around in the pool.

You find cool DVDs for us to watch.

You let us pretend to drive the car.

You take us to fun places for kids, like aquariums and amusement parks.

You let us eat ice-cream before dinner. Mommy doesn't like that, but Mommy is silly!

You give us lots of kisses.

You carry us when we get tired.

You let us have another ice-cream after dinner.

You give us great baths and make tsunamis arise over the tub and cascade onto the bathroom floor. Mommy says we are going to flood the living room someday, but Mommy is silly!

You give us lots of kisses at bedtime.

You will do anything in the world to keep us safe and happy.

We looooooooooooooooooooooooooooooooooooooooooooooooove you.

Your favorite kids,

Max and Sabrina

Thursday, June 18, 2009

Woo hoo, another giveaway! Want some mayo with that?



I am not still not sure how she found me, but a lovely lady who does work for the Subway peeps got in touch about a new program to prevent childhood obesity they're doing in conjunction with the National Institute of Health's We Can! program. There are some scary stats out there: Almost one in five American four-year-olds is obese, according to a study by the National Center for Education Statistics. And one out of three kids ages 2 to 19 is overweight or at the risk of becoming overweight, according to the Centers for Disease Control.

Granted, you and I have a lot more pressing issues than chubbiness to worry about when it comes to our kids. Max actually needs to gain weight, which is why he has been on the Dunkin' Donuts diet. But I know that his slimness has been a boon to his mobility; heft doesn't do kids with physical challenges much good. At four, Sabrina is a little too young to be watching her figure, though she is big for her age. At her annual the doctor told us to put her on skim milk, lay off the snacks and consider liposuction. Kid-ding!

Subway has a YouTube video on childhood obesity that features boxer Laila Ali and Jared, that guy who lost serious weight by eating subs. One of the anti-obesity tips is to reduce screen time on computers, so for the love of God, make sure your kids are not reading this blog. Here's the video, FYI.



I have five $20 Subway vouchers up for grabs—so if you're one of the five winners, you get $20 worth of free Subway eats! To enter, just leave a comment below about your favorite meal to make for your kids. It doesn't have to be admirably healthy, I just want some ideas! I'll choose five winners at random on Sunday evening and announce them on Monday (then you can send me your e-mail so Subway Lady can get in touch about where to mail the vouchers). Alternatively, if you don't have any great meal suggestions, just let me know the time and day you'd be willing to come over to my house and bring some good takeout.

xo

Wednesday, June 17, 2009

A Bill of Rights For Parents of Kids With Special Needs


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.

Tuesday, June 16, 2009

So, what are you doing for Father's Day?



This is what I bought for Dave over the weekend—a customized Sigg water bottle, for $31. Not exactly a bargain but I know he'll use it, it's healthy and it'll last! (Enter the coupon code CBB2009 at checkout for $3 off, it expires 6/22.) I'm also going to paint some pictures for him with the kids.

In prior years, I've gotten Dave a personalized photo calendar from Kodak Gallery, that's been a big hit. I just checked and calendars are $19.99 minus 25 percent with the coupon DADDYO (through June 22), so I may have to do that, too!

What are you guys planning on doing for the dads in your life?

BTW, tomorrow I will post the completed Bill of Rights for Parents of Kids With Special Needs. I included everyone's suggestions, just edited out some overlap. I am so proud we did this!

Monday, June 15, 2009

Can we talk?



This week's contest over at I Heart Faces is sepia toned, once again I couldn't resist an entry. Here's my little blabbermouth, Sabrina, mid-sentence. She asks a million questions every day. She makes a million observations. She provides running commentary on our lives, every second she is awake. She's been known to occasionally murmur in her sleep.

Nothing escapes her attention. Sample recent conversation:

Me: "I'm going out later, I have to go to the dentist."
Sabrina: "The same dentist Max and me went to?"
Me: "Yes."
Sabrina: "Will you get a Tinkerbell sticker, too?"
Me: "They don't give stickers to grownups."
Sabrina: "Will you get a new toothbrush?"
Me: "Yes!"
Sabrina: "Your teeth are yellow."
Me: [Silence]

I adore her patter, no matter what she is saying, both because it's usually amusing and because it's miraculous to hear her speech developing, given the significant challenges her big brother faces. I think she's been a major influence in getting Max to say more words, including key ones such as "ice-cream" and "doo doo." It's no coincidence that when we were on the Disney Cruise, the kids club gave her the "Best Big Sister" award, even though she is really the little sister.

Sabrina helps Max in all sorts of ways. Tonight, the kids were drinking water and Sabrina taught Max to blow bubbles into his cup. That may not seem like a big deal—um, actually, that may seem like something you do not want your kids to learn to do—but Max has issues breathing out (something that is critical to master for speech), and so that was great to see. When she said "Blow!", Max repeated "Woah!" He's still working on those consonants.

Talk, Sabrina. Talk.

A world of possibilities

video

This weekend, the future seemed filled with possibilities.

Here's Max, playing with his new tennis racket, and Sabrina, showing off her mastery of hissy fits.

Lately, Max is into all sorts of new things—baseball, tennis, swimming. As he's become more sure-footed and has gained better trunk control, he's more willing to try sports. Grasping things is still a major challenge, even with his left hand (the more functional one) but hopefully, better hand control will also come along. One thing I have learned over the years is that, when it comes to Max, there is no time limit for accomplishments. In toddlerhood, when everything seemed laser-focused on developmental this and developmental that, it was a hard thing to accept. But now, I know that we have time.

Last week, I told you there's a possibility we might be able to get Max a stem-cell infusion. Here's what Max's pediatric neurologist e-mailed me when I asked him about the program at Duke University:

"I am quite aware of the program and have had some kids go down to participate. I have not recommended it to anyone yet because I am waiting for results in the kids I treat. I have not seen anything bad, and perhaps a bit of good. So, if they judge his cord blood 'eligible' there would not appear to be any harm in trying it, but there are not any clear parameters that I have seen to judge the effectiveness of the treatment."

Of course, I e-mailed back right away to ask what he meant by "a bit of good," and this is what he said:

"As for the good, a bit more attention and focus, and a slight improvement in motor capacity, but perhaps it is too early. If you look at the cases that have been reviewed in the media, perhaps there is more to be expected with time. The numbers are not sufficient yet, however."

No matter, we are ready and willing to try this. This week, Duke is mailing us a kit to get some blood samples from Max, they need to make sure it's still a good match with the cord blood we've banked.

In case you are wondering, the procedure would cost around $10,000. I haven't yet called the insurance company, I highly doubt they will cover this as it is experimental and, as you know, I have battled them to get them to pay just for speech therapy (and still am).

Dave remembered that when he called the cord blood bank after Max was born, he was told that the sample they had gotten was excellent, filled with viable stem cells.

Yes, the world seemed filled with possibilities this weekend. What possibilities have you been dreaming of for your own child lately?

Saturday, June 13, 2009

Sabrina sees her first movie, Up



Yesterday, I had the day off from work. I accomplished my goal, sleeping late (I know, I have such lofty ambitions). Dave took the afternoon off, and the three of us went to see Up.

I would have loved to bring Max, except last month Dave took the kids to see Earth and Max literally ran screeching from the theater. He's into TV and DVDs, but anything on a giant screen is sensory overload.

So, it was just the three of us. Up is about an elderly widower/balloon salesman who hitches helium balloons to his home and takes a trip to South America, along with an unexpected 8-year-old stowaway. It's available in 3D, but not at the theater we were at.

Sabrina was mildly excited, most of all when Dave bought her a hot dog. Sitting in a theater for two hours is a lot to ask of a four-year-old (although if the movie had involved princesses, I'll bet she would have been fine). Plus, the movie is kind of involved for a little kid, especially in the second half. Me, I loved every single second. Pixar films—Toy Story, Monsters, Inc., Finding Nemo—are among my favorites. This one, I think, is the funniest of them all, and beautifully done.

When we got home, Max was in speech therapy. After the therapist left, we broke out the bubbles and the four of us enjoyed the rest of the afternoon together.

It was a Good Day.

Friday, June 12, 2009

A word from a seventh-grader with cerebral palsy



Happy Friday! I have a guest post today from Christine over at The Power of Housewife Word of Mouth. She's mom to Regan, 13, a very cool seventh grader who has cerebral palsy. Christine did a q&a with her daughter, I'm sure you'll find it as inspirational as I did.

Christine: In your own words, how does cerebral palsy affect you?
Regan: It is cool and scary at the same time. Cool because it sets me apart from other kids and scary because I just don't know what the future has for me.

Christine: What is your favorite part of having CP?
Regan: Camp definitely. It is my favorite place in the world. I go to three of them and I want to go to more.

Christine: How is your life different from other teens?
Regan: It really isn't that much different. It is sometimes because I can't play all the sports like softball because of my walker. But I do other things like track, cheerleading, tap and ballet.

Christine: When is it cool to have CP?
Regan: Well, I kind of get special attention and treatment and stuff. Like at the cheer competition when a stranger bought me stuff just for cheering with CP. And at Disney and Fiesta Texas they let us cut all the lines, and ride the rides two times. On the Disney Cruise I got to be a pin trader with the crew.

Chrisinte: Do you like sharing with others about your disability?
Regan: It doesn't come up much, but I am not shy about it.

Christine: Is there anything scary about the future?
Regan: I just don't know if I'll ever get married or have kids because I don't think I can do all the stuff I would need to do.

Christine: What do you want to be when you grow up?
Regan: I would like to teach ballet to disabled children, I would like to be a web designer and have my own site, I would love to work at summer camps for the disabled andI also love to travel a lot and want to see the world.

Christine: Do you have any bad habits?
Regan: I crack my knuckles, and I really need to stop that. I am bad about finishing my homework on time. [Looking Sheepish] and ummmmmm, I'm also good at acting helpless around people who don't know me very well so they can do stuff for me.

Christine: What are your good points?
Regan: I am really friendly and make friends easily. I am a great cuddler and really affectionate, and I am nice to almost everyone.

Christine: Why almost everyone?
Regan: Ummmm, sometimes I am not real nice to Rebecca [sister, age 10].

Christine: How do you feel about being a big sister?
Regan: It is hard because Rebecca is kind of a second mom so I don't take care of her as much as she takes care of me. But, I do let her sleep with me when she wants to or is scared. Even if she is a cover stealer.

Christine

Thursday, June 11, 2009

Stem cell therapy for cerebral palsy: Max might get it!



After hearing from Kate (THANK YOU, KATE!) that Duke University has a stem-cell injection clinical trial, I got in touch with them. Today, I learned that they would be willing to consider Max as a candidate.

Back when I was pregnant, my lovable worrywort of a friend, Wendy, told me she'd done cord-blood banking for her baby. I figured if Wendy did it, I should, as I am also a worrywort (and just as lovable, I hope). So I signed up with Cryo-cell, one of a handful of cord-blood banks out there. There was an initial fee (can't recall how much); storage costs us $95 a year per kid (we did it for Sabrina, too).

I never imagined that we might actually need the cord blood. Never imagined that my baby could have a stroke at birth. Yet that's what happened, and I have a beautiful little boy with cerebral palsy. There are no miracle cures, but there is this possibility.

In a nutshell, Duke isn't sure cord blood is helping out kids with CP but, based on work they've done in general with genetic diseases of the brain and also animal studies, they believe it can help. The injections of cord blood are not risky, and while Max might not like getting an IV, he will deal. I've been Googling around, and it seems that some kids with CP who've gotten the cord blood injections have shown improvement.

I plan to run all of this by our pediatric neurologist. To me, this seems to fall into the camp of treatments that can't hurt and might help, and Dave and I fall firmly in that camp. Here's an article from Duke on what they've been doing.

The next steps are to get a copy of the report on Max's cord blood from Cryo-cell for Duke to review, to make sure there are enough cells and that the unit was frozen properly. If this works out, we'll have Max's blood drawn to make sure it matches up well with the banked cord blood. Then that would get shipped to Duke, and then we'll have to ship ourselves to Duke.

My deepest wish is that a stem-cell infusion could help bring along Max's speech. Although if it could also enable him to better use his hands then, well....

I don't want to fantasize too much here. Who knows, for one reason or another, Max may not be a candidate for an injection.

But, heck, I am going off to sleep now and letting myself dream.


Photo by nushuz

Wednesday, June 10, 2009

Parents of Kids With Special Needs: A Bill of Rights



This post is inspired by the comments I got on yesterday's guilt trip. In the wise words of Lisa, "You really shouldn't have to explain Max's story (unless you want to) any more than you should have to explain why he has brown hair."

Lisa got me thinking about a Bill of Rights we, as parents of kids with special needs, are entitled to. I'll start it—please add your "amendments" in comments, and I will put the whole thing together and re-post it. Then we can all print it out, stick it on the fridge and live by it! Or something like that.

A BILL OF RIGHTS FOR PARENTS OF KIDS WITH SPECIAL NEEDS

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

* 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 fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to blast Bruce Springsteen, 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 play aimlessly with our children—not for therapeutic or educational purposes. Just for fun.

* We have a right to insist that our kids are included in activities.

* We have a right to demand that our husbands bear equal responsibility. Or at least change diapers.

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

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

* 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 have a crush on Hugh Laurie.

* We have a right to cheer like crazy in public anytime our children amaze us.

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



Photo from istock

Tuesday, June 9, 2009

Another guilty confession, with a happy ending



This weekend was my college reunion, I'd been really looking forward to it. Only Max was under the weather, so he ended up staying home with Dave and Sabrina and I did the four-hour drive Saturday morning.

I can't lie: It was a relief. I knew Max wouldn't love the loud band that was going to play at the BBQ (I'd called ahead and asked about the noise level), the endless photo-taking, all the people milling around. Even Sabrina, usually unflappable, burst into tears when I spotted a long-lost friend and screeched, "OH MY GOD, IT'S ALYSSA!!!"

Also, full disclosure, I wasn't up for the stares. I just wasn't. I didn't want to explain about Max, I didn't want to recount what had happened to him, I didn't want to reassure everyone he's doing OK. I just wanted things to be carefree, like they were in college.

So, of course, driving up all I felt was guilt, guilt, guilt. Then I called Dave, and heard a lot of background noise. "Where are you?" I asked. He and Max were at an amusement park. "Isn't Max not feeling well?" I asked. "No, he's having the time of his life!" Dave said. I called again a few hours later. Again, lots of noise in the background. "Are you still at the park?" I asked. "No," said Dave, "we're at White Castle eating cheeseburgers." I called back a few hours later. This time I could barely hear Dave. "WE'RE AT OUR BLOCK PARTY!!!" he shouted into the phone. "MAX IS JUMPING AROUND IN THE BLOW-UP BOUNCY THING!"

My boys basically partied all day long. It's a wonder they didn't go to Hooters that night.

Meanwhile, Sabrina and I had a wonderful time: We had hot dogs and ice-cream sundaes, painted pictures and made sand sculptures, stayed at a good friend's house whose kids have maybe every toy ever created.

In the end, it was a happy weekend for everyone.

It's funny, you spend so much time trying to make sure your child with special needs is included in things. And then, you leave him out of something—because he won't like it, because it's the right thing to do, or both—and suddenly, you're ridden with guilt. Though I know leaving Max at home was the best possible decision, in the end.

A vaccine against the swine flu would be a wonderful, but someone really needs to create an anti-guilt vaccine. Sign me up!

Monday, June 8, 2009

The wow list: How has your child impressed you recently?



I'm headed back from my college reunion, will tell you about that tomorrow. In case you're wondering, I didn't get arrested or anything for bad behavior on campus, although Sabrina did. Meanwhile, thought I'd take a minute to celebrate—who else?—Max. And your kids!

Things Max recently did that wowed me:

• Held a Rice Krispies treat in the shape of Mickey Mouse and ate the whole darn thing. Cavities? Who cares! He grasped the stick for about 15 minutes; for a kid who has such challenges holding things, that was pretty amazing. I need to figure out other ways to use his sweet tooth to his advantage, methinks.
• Went for a haircut and didn't wig out, not one bit. Seemed excited, even.
• Said the words "pink lemonade" (that sweet tooth again)!
• Ran a base (I can't tell you how many times I've watched that video)
• Typed his name on a computer screen.

OK, your turn to boast about your kids!

Friday, June 5, 2009

Will she stick up for him?



Like many siblings, Sabrina and Max have a complex relationship.

She loves him fiercely. When we were on the Disney cruise and left the kids in the playroom, she'd stick around Max and make sure he was doing OK, sometimes keeping a protective hand on his back. At the beach recently, all she wanted to do was write "Max" in the sand over and over and over again. And today she asked if she could marry Max when she grew up. When I said no, because sisters and brothers don't marry, she said, "OK, you marry him."

But then, they fight and pull each others' hair. And Sabrina cannot stand it when Max touches any of her stuff. You may have heard a very loud scream the other day emanating from somewhere in the Northeast; that was Sabrina, losing it when Max innocently laid a hand on a Princess Ariel vanity table we got from a neighbor.

A few days ago, she had a playdate with another little girl. They were hanging in Sabrina's room, and Max and I walked in and he said "Hi!" to the girl. "I don't want to say hello to Max," she said. "I don't want to play with him. He drools."

A look of concern flickered across Sabrina's face.

"I don't want to play with Max, either," Sabrina said.

Pffffttt....

That's the sound my deflating heart made.

I didn't force the matter and simply said, "Let's be friendly, girls. Max just wanted to say hi!" They went about their business, Max and I left and hung out.

It's the first time anything like this has happened. Later, I said to Sabrina, "Max is your brother, and you should always be nice to him. So if another kid says she doesn't want to play with him, please don't say that, too. It could hurt his feelings."

She didn't respond, though as always, I knew those wheels inside her head were turning and she understood.

It's going to be hard for Sabrina navigating the realities of her social life and the realities of Max. I just hope that she sticks up for her big brother.

Thursday, June 4, 2009

What it's like to limp a mile in another person's shoes



These last few days, I've gotten a very, very tiny sense of what it's like to have a disability. Before I go on, I want to clarify that I am NOT claiming to understand what it is truly like to have a disability. I could never. But, like I said, I got a peek.

Sunday, I was walking down the stairs in our house, carrying Big Girl Sabrina, when I stumbled. I almost fell down the staircase but somehow I stopped myself and sat down hard on my butt, Sabrina on my lap. I figured I'd killed my back but when I stood up, the toe on my right foot next to the pinky was hurting. That's when I realized I pretty much fell on it.

Since then, I've been hobbling around (finally hauled myself to the doctor today, just sprained, no fracture). It's taken me twice as long to get places. People have sighed and hissed at me for walking up and down stairs slowly. People have stared—I've gotten some of those sympathy stares, too. It's been a long few days.

Max is not cognizant of people noticing him. This is a mixed blessing, as it means he lacks that intellectual awareness but at the same time, he is content in his world. I would prefer for him to reach that level of intellect. Is that so horrible? Even if he does become aware of people staring at him or noticing his challenges, I know I can empower him to get past it.

This weekend is my college reunion, we're all going. I hope the toes heal. So, do you think I can drop 20 pounds in two days?


Photo by Joey Harrison.

Wednesday, June 3, 2009

One inspirational dog



I recently found out about Frankie the dachsund, his human, Barbara Teichel, and their incredible story. It involves a freak accident, a disabled dog, an amazing invention and a wonderful woman who wrote an award-winning book, Frankie the Walk 'n Roll Dog.



Here's my q&a with Barbara, who's currently doing a virtual blog tour; I found it so easy to relate to what she's been through and what she's learned.

Please tell us a little bit about Frankie—where did you originally get her?
I brought Frankie home from a breeder about two hours from my home. She was three months old, and the last one of the litter. It was love at first sight when I saw her toddle down the gravel driveway. Frankie is the sweetest dog. She does have a bit of “German” attitude in her, being a dachshund, and at times can be stubborn if she does not want to do something. But overall she has a great temperament.

Why'd you name her Frankie?
I had Frankie’s name picked out before I got her. I love the movie Frankie and Johnny. For those who may not know, Frankie and Johnny are lovers in the movie. Frankie happens to be the girl character. I remember thinking what a fun and sporty name for a girl. So I knew that would be my dachshund’s name. Though when I first brought her home and introduced her to the neighborhood kids, one little boy told all his friends I named her Frankie after frankfurter. Ha!

Can you share what happened at the kennel and how you found out?
My husband and I were on vacation in Florida when we received the call Frankie was seriously hurt at the kennel where she was staying. I was told, from what the kennel owner could figure out, that Frankie had jumped up onto a container within the kennel she was housed in. When she jumped up, the container tipped over and Frankie fell onto the cement. The kennel owner had just checked on her an hour before. When she came back out to check on the dogs again, Frankie was sitting on her butt, but not really moving. If you know dachshunds, they are always up and wagging their tails when they see someone. The kennel owner realized something was very wrong. She called my sister-in-law who took her to my local vet, and that is when I received the call Frankie had likely ruptured a disk in her back and needed to get into surgery as soon as possible.


Frankie and a friend before the accident

When you were told that Frankie would not walk again, what was your first response?
I was absolutely devastated. I also felt so helpless, so many miles away from her. I had just lost my chocolate lab, Cassie Jo, to cancer nine months before, so the thought of losing another dog, my little Frankie, really had me scared. When the examining vet called, I was told at first Frankie had a 10% chance of walking again. At that point I thought I had no choice but to put her to sleep. Then the surgeon called and thought Frankie had about a 30% chance of walking again. Even though I was worried about how I would take care of a handicapped dog, I knew I had to give Frankie a chance. I love her so much and knew I had to try, so Frankie went into surgery at midnight on Easter Sunday.

At about three months, it looked like Frankie would not walk again on her own. I had done physical therapy and massage for her, and had her on strict cage rest as the vet recommended, hoping she would walk again. I was told statistically if she were to walk again, it would happen in the first three months. I started to feel sorry for myself and for Frankie. The thought of having to express Frankie’s bladder and bowels for the rest of her life had me feeling very overwhelmed (because of her paralysis). I also wondered how people would react to her in a wheelchair, and would they think I was being cruel?

What rallied your spirits and your determination to help her?
One day, as I was doing physical therapy for Frankie while listening to the Oprah show, my whole attitude shifted. I heard Oprah announce that a dog had been born with only two legs, and she explained how her owner helped her to walk again. As I looked up at the TV, a dog named Faith came walking across the stage. It was such a release for me. I cried so hard. I knew in that moment I had no right to feel sorry for myself, and I had to look for the blessing in my situation.

What keeps me going is sharing Frankie’s message of hope and inspiration. When I first started to take her out in public in her wheelchair, I was most met with compassion. What was really inspiring was when children would run up to us and eagerly want to know why my dog was in a wheelchair. I realized I had a wonderful opportunity to give back to the world in a positive way by sharing Frankie’s story. I also realized I could help children overcome their own challenges through Frankie.

How did you first hear about a wheelchair/mobility cart for dogs?
When the surgeon was telling me Frankie’s prognosis I said, “What if she does not walk again?" That is when she told me about doggie wheelchairs. She said dogs do very well in wheelchairs and can lead a quality life. I was surprised it existed, and couldn’t picture what one would look like. But knowing this gave me a spark of hope that even if Frankie did not walk again, she could still live a wonderful life.


Way to go, Frankie!

What sort of response do you get to the cart when you are out with Frankie?
Taking Frankie out in public in her cart has been the greatest experience of my life. Most people are so compassionate and want to know why she is in the wheelchair, and how it happened. I often have people saying, “Bless your heart for taking care of her.” But to me, I am the one blessed, because of Frankie and all she has taught me. Most people think it is so awesome that dogs can live a pretty normal life in a wheelchair.

Do you ever have to deal with negative responses?
No. I do follow stories about disabled animals, and have only run across negative responses a few times when people have commented they think it is cruel to put an animal in a wheelchair. Some have even said it is selfish to keep a dog alive that can’t walk. I don’t agree. I know how happy Frankie is. She is still the same dog. She just walks with the help of a dog cart. That’s all. She is still Frankie. The way I look at it is you wouldn’t put a human being to sleep because they can’t use a limb. Knowing what I know now, I would have never forgiven myself if I had put Frankie down.

What are the most important lessons you've learned that might apply to parents?
The biggest lesson I have learned from Frankie is to look at my challenges as a way to learn and grow. I don’t believe we are given challenges to be punished. I believe if we look deep enough we can find the blessing to all things that happen in our lives. Frankie also taught me that I always have a choice. I can be mad or sad about a situation, or I can choose to be happy, no matter what. It is amazing when you decide to go through life with a positive attitude how much easier it is. I’m not saying I’m perfect at it, because I’m not. But Frankie reminds me every day that I can choose happiness. When I see her sweet little face each morning, I know what I was brought here to do.

To find out more about Barbara's book about Frankie or buy it, visit Joyful Paws. Oh, and if you check out the virtual tour blog and leave a comment, you'll be entered to win some cool gifts.

Tuesday, June 2, 2009

What a difference a year makes



Max's school had a Concert in the Park event over the weekend. They had singers performing on a stage, ice-cream and cotton candy stands, clown face-painting, raffles and all sorts of fun stuff.

Last year, Max couldn't stand to be anywhere near the music, or even outdoors at all; he just wanted to stay inside, in the rooms he was familiar with.

This year, he was into everything.

He ate the cotton candy. Wait, even better, he held onto the cotton candy cone, no mean feat for him.


He not only listened to the music, he tried to be a backup singer.


He gave me a tour of the school and his favorite wheels.


He hung out with his teacher, Erin.


He hung out with the event mascot.

He generally had an awesome time.

But wait, there's more! Last week his school had a concert. Max has NEVER in his life participated in one. Again, this is a kid who hates noise and crowds. But they coaxed him onto stage and he stayed. Max was a lion; a teacher even crocheted a mask just for him.

Seeing Max living, and loving, life like this makes me the happiest girl in the world.

All of you moms with very young kids, take heart and take note: Trust me, you have no idea what your child may someday achieve.

Believe.

Monday, June 1, 2009

Max plays ball!

video

Here, at last, captured on video. Watch out, Derek Jeter!