Saturday, May 30, 2009

Great free stuff for kids with disabilities

I came upon these recently, and wanted to share.

Free music! Songs of Love is a foundation that provides personalized songs for kids and teens facing medical or emotional challenges. You fill out an online profile of your child, and about a month or so later a CD arrives in the mail with the finished song. We just got one for Max that's very boppy and all about his love of transportation; we play it in the car and he loves it.

Free professional photos! The Littlest Heroes Project is a group of good-willed photographers who offer free photo sessions to kids with disabilities and serious illnesses. I filled out an online application, got approved and now I just have to choose a local affiliated photographer and pick a date. Hard to resist—professional photos of Max make me giddy.

If you've found any good services for kids with challenges, let the rest of us know!

Friday, May 29, 2009

The reality checks you get about your special needs kid

As you know from the photo extravaganza I've subjected you to this week, we had a spectacular time on the cruise. Going on vacation with the kids is generally amazing. When you're a working mom, as I am, you experience the pleasures of being a full-time mom (with the perks of prepared meals and maid service). Being in a new setting, though, also means I get lots of little reality checks about having a kid with disabilities.

When we're at home, I rarely sit around thinking about Max's challenges. If you'd told me I'd ever reach this place years ago, I never would have believed it; when Max was very young, I so feared for his future that all I could see were the things he had trouble doing. Now, when I hear him trying his best to say words, I hear communicating. When I hold his hand, I feel the warmth and pleasure of his touch, not muscle tightness. When I look at him, I see a beautiful little boy with floppy hair and a smile that's like sunshine.

But when we leave our routines and comfort zones and the cocoon of our home, neighborhood and places we know, suddenly I have all these "Oh, I have a kid with handicaps" moments.

On the Disney cruise, the kids' club was willing to accommodate him, even though he wasn't potty trained like the other kids, but we had to be on call to come and change his diaper.


We couldn't go for family dinners at the restaurants or go to shows as a foursome, because the noise made Max wig out.


I'd notice people staring at him, oftentimes with a sympathetic look on their faces.


Once, a mother asked about Max's condition, and when I said he had cerebral palsy she asked, "When is he going to get braces?", clearly not realizing that he walks pretty damn well and that cerebral palsy comes in many different forms.


There were all sorts of little "Oh" moments like these. They didn't bum me out. Well, OK, maybe a little, but it's impossible to stay bummed in the bubble you exist in on a Disney cruise. Besides, I knew there's much to celebrate and be grateful for. Because this is a child who amazes me, impresses me and melts my heart every, single day.

Thursday, May 28, 2009

"Mommy, can I wear my princess outfit? Please?"

On day two of the cruise, Sabrina cleverly lured Dave into the gift shop, where he bought her a $65 Aurora princess outfit (did you know that was Sleeping Beauty's name?) and a $15 plastic crown. "Can I just call you 'Suck-errr' from now on?" I asked Dave when I found out.

But that outfit paid for itself. Because Sabrina basically wore it every second possible, except when she went swimming. I could have saved myself a lot of packing, if only I'd known. She wore it... breakfast... the kids club... play shuffleboard... bed, for a nap... dinner... a girls' night out... the arcade...

...and to all of her important meetings, like these.

Astoundingly, she did not ask to wear it to preschool when she got home. Though I would have let her. That princess outfit has cast a spell over me.

Wednesday, May 27, 2009

Max and the Disney gang on the cruise

Mickey and Minnie, Max adores without hesitation. But when any of the other Disney characers are around, it takes a while for him to warm up to them.

First, he has to scope them out.

He'll touch them, poke them, prod them, pat them down to make sure they're not carrying any weapons or contraband.

Once he warms up a bit, he likes to check out the nose. Those guys do have some big noses.

Maybe he'll slap their hands or give a high-five.

And then he gets all bold and smart-alecky and starts doing imitations.

Next thing you know, he's cuddling up to them.

Last, a big fat smooch.

I think he's just playing hard to get.

Tomorrow, yet more photos: Sabrinarella, the lost princess.

Sunday, May 24, 2009

Our Disney Cruise to the Western Caribbean: heavenly!

We're back from the Disney Cruise on The Magic, slightly tan, slightly pudgier and very, very happy. Our trip was stellar, from the moment we stepped foot into the cruise terminal. Max was wigged out by the sight of the gigantic ship and the hustle and bustle, so I found a nice Disney staffer (OK, they are ALL exceptionally nice) to escort us through the lines and find a quiet place for us to hang out before we boarded. Then Max spotted Mickey and made a beeline for him.

This is our cabin, #8580.

And here's Max on the balcony, his favorite place to be. I think he would have slept out there if we let him. Actually, we had high hopes the kids might sleep in their own beds, and they did. At least on the first night.


The kids adored the Oceaneers Kids Club. It's for ages 3 to 4, but I thought it would be best to keep Max and Sabrina together. She watched out for him (she's gotten very motherly lately, when she's not trying to maim him). The staffers gave Max plenty of extra attention, and were fine with feeding him at mealtime when he was there. Which worked out well, since Max hated the din of the restaurants.

Otherwise, we fed the kids in the cabin. Max is now totally accustomed to room service. His meal of choice: tortilla soup, lasagna and chocolate ice-cream.

In general, the food on the cruise was great. I had salmon most nights, with the occasional steak or fancy pasta dish; Dave got his fill of seafood. And almost everything else.

With our wonderful waiters, Hemant and Aswald. (Hi, Hemant, if you're reading this!) You rotate between the three restaurants on board during the cruise, and your waiters travel with you.

The last night, they served Baked Alaska.

One evening, we dined at Palo, an adults-only restaurant located on the top deck. Excellent view and very romantic, except for the part where we got beeped from the kids club. I nervously checked the Motorola pager they'd given us, concerned that something was up with Max. "Sabrina would like to know where you are," the message read. Yep.

The first port of call was Key West, we took a tram tour and hit the aquarium. Next up was Grand Cayman, we visited Botswain's Beach Adventure Park and Turtle Farm.

The kids loved the lagoon pool...

...and the turtles. They wouldn't pick one up, so I did. And, yeah, I wear a big floppy hat. You got a problem with that?

In Nassau, we cruised the shops and visited The Atlantis, which is quite the sprawling spectacle. The aquarium there was cool.

Here's a lovely eel.

Our last stop was Disney's private island, Castaway Cay. Leave it to Disney to have its own island.

It was gorgeous. We hung out on the beach, enjoyed a barbecue lunch, let the kids try their first rum punches. Kidding!

Max and Sabrina confer on sand castle architecture.

Then, back to our ship!

We didn't do a ton of activities on board, since Max couldn't stand the crowds. We played shuffleboard, walked/ran the decks and visited the characters. Dave and Sabrina went to a pirate party one night. Another time, we took a kite-making class. I didn't get to attend the napkin-folding seminar, something I will surely forever regret. Oh, and Dave developed a bingo addiction, but I am not worried, unless he starts looking for a bingo hall in our area tomorrow.

Sabrina and I also had tea with Alice in Wonderland.

Mostly, we hung out in the Mickey Mouse shaped pool on Deck 9.

Here's Max, swimming...

...and here's Sabrina, doing her best to look adorable.

At night there were spectacular, Broadway-quality shows, including Twice Charmed (the Cinderella story with an alternate ending) and Dreams (a show narrated by Peter Pan that featured scenes from The Little Mermaid and Cinderella and, yes, Sabrina was giddy).

Max liked hanging out in the video arcade with Daddy, who is teaching Max to drive like a crazy person.

They screened Disney films every day. I snuck out of the cabin at 10:30 one night to see Earth, a documentary about the planet that was both wondrous and sobering. (If you're thinking of taking the kids, note, it's rated G but there are some scary scenes involving animals chasing prey that had me covering my eyes.)

Our last night on the ship.

Coming up tomorrow: Max and his Disney posse.

A post about nothing that's really something

Hi! So, we're almost back from vacation, haven't had Internet access and I just realized that due to technological difficulties (er, I scheduled my guest posts for the wrong days), they didn't go up. Better late than never! Here today is Tiff from Three Ring Circus. She's an Aussie mom with an amazing spirit, a great sense of humor, a knack for taking photos and absolutely adorable kids.

I'm supposed to be writing a post to help the beautiful Ellen out while she takes a much needed break.

I wrote something when I was in a bad mood but it wasn't right.

I thought about warning you all that there was a much worse influenza out there, than swine flu, called male flu but in light of recent news headlines, it would probably have been in poor taste.

I just need you to know that Maddy (my very blonde daughter) thought that the reason everyone was wearing the surgical masks in all of the related news articles was to hide the snouts that had grown. You know, because they had swine flu.

Yeah, she's twelve

and either very vague or a great comedian.

I thought I could tell you about how the flu puts the fear of God into anyone with an immune deficient kid and how every fibre in my being wants to isolate all of our family for all of the Winter (we live in Australia) and not let them out of the house until every last virus infested person is better but then you might think I was totally weird and I want you all to like me (I'm needy like that).

I thought of showing you a photo of a couple of my kids', in a compromising position and discussing my husband's thoughts on our ever growing supply of toys but you don't know me that well and this is not my blog, so perhaps I should keep it very G rated.

This time, anyway.

It's 5am here and I promised I would have my article ready...oh, sometime last week.

I'm awake because my three year old twins have been up since 4am and I've just finished having a conversation about being proud.

I asked them to whisper, so as not to wake the whole house and Noah said;

"Don't be cross, be proud"

and Ivy started to cry...

"I thought you were proud".

"I am proud of you," I said, "I just want you to be quiet".

They were quiet for about two seconds and I'm still proud of them.

Actually, I'm proud of all of my kids. Each has overcome some terrible things and every single one of them have handled themselves with amazing grace.

Children are astonishing, don't you think?

Highly adaptable, forgiving, open and innocent, in a way that adults can't quite pull off, or lose along the way in the process of growing up.

I like to think that I am teaching them about life but the more I experience motherhood, the more I am of the mind that it is the other way around.

I am learning more from them than I have ever learned in school;



the ability to not just listen but really hear what a person is saying.

How to keep a sense of humour

and how to make lemonade when the world throws you lemons.

Pretty important life lessons, wouldn't you say?

So, my post is about my kids, which it mostly always is, because I'm in awe of them.

Plain and simple.


Friday, May 15, 2009

Brainless Friday

Seriously, that's how I feel today. I stayed up till midnight finishing work and just did a brain-numbing flurry of packing, our plane leaves in a few hours. I guess brainless is not a bad state of mind to be in when you're going on a Disney cruise. :) Happily, the black health cloud hanging over our house seems to have lifted.

Here, for your viewing pleasure, are shots from last year's Disney World trip. I'm guessing the kids will love the cruise just as much, especially since they could have cared less about the rides (well, except for the Go Cart track, which Max went on approximately 47 times). They were all about the characters. Max particularly enjoyed patting them on their butts.

Come visit next week, I have a bunch of great guest posters lined up!

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