LIFE IS A SPECTRUM

Diz0711_PopFountains_Billster

Billy had a week off from Camp Escape last week, so we decided to take a family vacation. Last year, at this time, we chickened out of family vacation, because we just didn't think he would sleep in a strange bed. We had visions of long, screaming sleepless nights that scared us into opting for a STAYCATION. Which turned out great.

We've taken vacations with extended family, so that my mom could sleep with Billy – like our New Year's trip to Disney. But we've never managed to pull off an overnighter with just the four Broadfeet.

But this year, we pulled up our big-boy pants, took a deep breath and headed for Disney World: me, Dave, Billy and Willow.

At first, I wasn't sure how much it sunk in with Billy when I told him we were going to Disney World again. I showed him some pictures and explained that we were going on Tuesday: “Today is Wednesday. On Thursday and Friday, we go to camp. On Saturday, we go to gymnastics. On Sunday we go to church. Monday we will stay home and relax. And Tuesday we go to Disney World!”

Each day, I would tell him what day it was, and he would update this mantra to himself: “On Friday we go to camp, on Saturday we go to gymnastics, On Sunday …” and so on.

Diz0711_Teacups

Still lovin' those Teacups!

For many autistic people, mastering the concept of time can be difficult. This was the very first time I'd seen Billy show real anticipation about an upcoming event. And demonstrate a grasp of days of the week!

He also showed that he had memories of his previous trips, because he talked about the things he wanted to ride – in his own way: “The Teacups, the Crazy Train, The Smaller World, The Dumbo...”

We got an awesome deal on this three-day getaway. First of all, our tickets were comped, thanks to the nice people at Disney. And then Travelocity suggested a hotel deal for us: a two-bedroom villa at Orange Lake Resort (part of the Holiday Inn Vacation Club) for about $120/night (there were some taxes and a $9/day resort fee as well). The catch: we had to go on Tuesday and Wednesday night, but that worked fine for us.

Orange Lake Resort has a huge kids Splash Pool complex, a water slide, an enormous one-foot-deep baby pool with sprinklers, pop fountains, a lazy river ride, a putt-putt course, and a bowling alley.

Diz_PopFountain2

We didn't actually visit the golf or bowling, because our kids would have spent the rest of their lives at the pop fountains, given the chance.

 

But Billy did conquer his fear and ride the water slide, which he didn't stop talking about, in wide-eyes wonder, the whole trip: “It goes over your hair!” (His way of saying he got dunked under the water briefly at the end.)

 

We spent all day Wednesday at Magic Kingdom, mostly in the Fantasyland section, and both kids had an absolute ball. They loved It's a Small World, of course (a friend suggested that this ride is much more fun for adults if you imagine you have a shotgun) and Dumbo.

 

With our Guest Assistance Pass (available to kids and adults with all kinds of disabilities), we were able to scoot through lines pretty quickly and get to every ride they wanted to ride on that one day. We only had one Cast Member demand to see our Guest Assistance Pass (which he called the “handicapped pass” in a rare moment of Disney non-political correctness) because I guess he couldn't believe our child had any problems. But I have learned – especially after our last fighty trip to Disney – to take this as the compliment it was not intended to be and just get on the bleedin' train.

 

diz_castleshot

The obligatory "castle in the background" shot. The excitement is palpable!

I didn't take that many photos this trip, because I really wanted to be in the moment with my kids. Too often on any excursion, we spend so much time setting up photo ops that we ruin the fun. And by “we,” I mean, of course, “me.”

We had FUN. The kids were good company. Billy listened, communicated, and didn't tantrum once. He handled all the stimulation with a pretty good humor, only losing it once, on the Pirates of the Caribbean, which I had tried, in vain, to convince my husband was a BAD IDEA. I wish I could feel more triumphant about being right.

One of the most touching things that happened was the way the kids bonded with each other. At ages two and (nearly) five, they don't really run in the same circles, but in many ways, developmentally, they're about at the same level. And in some ways, like communication, Willow is ahead of her brother.

Still, they found delightful ways to play together. With no cousins, grandparents or other adults (other than us, and we're old news) to coddle them, they stuck together like glue. They goofed in the back seat together on the way down to Orlando (when they weren't fighting as violently as is humanly possible when strapped into car seats at arm's length from one another). Once we were at our hotel, there were games involving chasing and hiding and bouncing on the new beds in “their” room (note: Willow did NOT actually end up sleeping in that room with Billy, but it was “theirs” during daylight hours). None of these games did we remotely understand. And all of them were infused with gales of laughter.

We had "circle time" each night as a family, just like we do when we're at home. We thought it would help Billy transition to sleep more easily if he had the same routine on the road -- to the extent possible. And maybe it worked -- he slept through the night both nights in his own room.

And after they went to bed, Dave and I cooked dinner in the condo, which had a full kitchen, sat together on the screened-in balcony to eat it and actually talked to each other. Mostly, we talked about what an awesome vacation we were having, and in hushed tones, used terms like "just like a normal family."

After we'd been home a couple of days, I went into Billy's room one night to tuck him in and found him playing an involved game on his own. He had upturned Willow's doll walker and was placing his dominoes (he LOVES dominoes) in the little trough created by the upside-down plastic toy.

At first, I was irritated. I didn't know why he had taken Willow's toy or why he was jamming in his dominoes inside of it. But before I started cleaning up the “mess,” something stopped me, and I asked him, “Billy, what are you doing?”

diz_billyplaysslide

Can you spot the "yayers?" FYI, down below is The Dumbo, The Smaller World and The Crazy Train.

Billy stared at his little project for a minute before picking up one of the dominoes and pushing it down the little trough. “He's having a water slide,” he informed me matter-of-factly.

And by God, on second look, it DID look like a water slide! He was imagining his trip and using his dominoes to act it out!

One little line of dominoes was separate from the slide. Out of curiosity, I asked him again, “What are these guys over here doing?”

Billy stared at the line of dominoes for a couple of seconds. “They're ...” it was clear he was searching for a word. Finally, he finished, “They're YAYING.” And went back to his game.

They're “yaying,” cheering for the domino going down the water slide, just like he did for each of the kids that went down the slide ahead of him. He was actually acting out a little drama of his own, with characters that had roles, and it wasn't a script he had learned but a story that came out of his own imagination, based on his own memories.

This is me yaying.

Reader Comments

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What a Fantastic Vacation!

I'm so glad you took advantage of the comped tickets! It sounds like you had an absolute blast! Yay!

Snippets 'N Stuff

I'm glad you had a good time. LOVE the dominoes story. Yay for Billy! :)

Awww, what a wonderful story! I'm so glad it worked out so well.

YAY to you guys for giving Disney another try! So happy to hear it was such a success! And I love the water-slide-acting-out-at-home story. Awesome! We're considering a day at Disney later this year. It's so good to hear some tips about making it a great experience.

Yaying Here, Too!

That's one of the best feelings in the world when you realize they're using their imaginations! Yay, yay, yay! Sounds like you guys had a wonderful vacation! I want to take our kids to Disney so badly now that we know about the golden ticket. I love seeing our kids bond and I can't wait to make some fun family memories! =)

Total 5 comments

I've been out of touch again because we've been on Spring Break. It wasn't that we didn't have Internet access; the condo where we stayed had wireless high-speed Internet. It wasn't that I purposely took a break from electronics in an effort to reconnect on a more personal level with my family – as much as I'd like to claim that as the reason. In fact, the reason I have not been blogging is #1 on my list of “A few things Mama learned during Spring Break 2011 ...”

SB_BillySmiles_beach

1. You have to be able to hear yourself think in order to write.

Who would have thought? I had all these wild and crazy ideas about our vacation at the beach ... before we actually left. As I packed swimsuits and running shoes and sunblock, I imagined myself starting each day with a meditative walk on the beach, followed by a trip to the spa downstairs where I would work out for a full hour before hitting the sauna. In my mind's eye, I topped off this indulgence in self-care with a full body massage and pedicure. Which brings us to ...

2. After 24 hours with my kids at the beach, I want to work out like a hole in the head.

And as for the sauna: HA! I was lucky to have time for a shower. The closest I got to a pedicure was rubbing my feet on the bottom of the pool while carrying a child on my back.

But it was phenomenal week. Last year at this time, we had a “stay-cation” for Spring Break. We just didn't feel that Billy was ready for sleeping overnight in a strange place. That was a great holiday too; we just stayed in town and “played tourists” in our own city.

This year, though, we took the next step: an actual week-long vacation. Number 3 on my list is something I've stated before ...

3. A year can make a world of difference in the life of a child, any child.

Please remember that -- and help me remember it -- when we get a bit down about the current situation.

We take so many things for granted now that were practically unthinkable a year ago: eating out in (certain) restaurants without meltdown, the kids (mostly) sleeping through the night, Billy being potty-trained, Billy enjoying the company of other children. It's important to look back and realize that, even if it seems slow sometimes, progress is being made. And speaking of other kids ...

SB_BillyPrances

Beach sand = yummy tactile input :-)

4. Sometimes when we back off for a little while, nudge our little birds out of the nest, they will make breakthroughs seemingly on their own.

I sat in rapt wonder at a playground this past week as Billy played for a good half-hour with another little boy. They threw a ball back and forth, kicked it (sort of) to one another, chattered away in their own little ways, laughed and had a big sporty little boy-time. He didn't need me to provide appropriate social prompts, encourage him to take turns or guide his behavior in any way.

Of course, this wasn't actually a miracle. It just looks that way sometimes. His devoted team of speech therapists, teachers, aides, behavior therapists, occupational therapists, and family members have been working towards this goal for YEARS.

So team, take a bow -- alongside Billy. Your hard work has resulted in one happy four-year-old enjoying a great day at the playground and making a new friend.

5. Vacation is no time for flashcards.

Willow_partyoutfit

Of course, that didn't stop me from packing them. I broke out the sequencing cards one morning (3-step cards to help him learn “first, second, last” storytelling), and asked Billy about one simple picture story depicting a boy getting a book off the shelf, “Billy, what does the boy want to do next?” Instead of picking out the picture of the little boy reading, Billy replied, “Go to the beach.” And I got the message.

As a mom, I have to work on “going with the flow” a little bit. It's tough. If you read this blog regularly (and thank you, if you do!), I'm a control freak. I readily admit it. I spend so much of my time trying to be three steps ahead of every meltdown that I forget to relax and let my kids be kids sometimes. I used to have “Every moment can be a learning moment,” as my mantra, but my new mantra is, “Every moment doesn't HAVE to be a learning moment.” Chill out, mom.

6. It's Willow's vacation too.

Wait a minute, I have another kid? Sometimes, it still kinda surprises me, because so much of our planning goes into giving Billy the support he needs in any situation that I forget that Willow has "special needs" too. Even her birthday party gets planned around Billy's schedule, challenges and preferences. She's NEVER managed to blow out her own birthday candles without him getting there first.

Condo_party

Cool digs, huh? Thanks, sis!

Willow's few needs are for a moment of individual attention each day, a handful of birthday cake, and then she's good to go. The rest of the time, she's happy to make it all about her “Bee-dah” too.

7. Billy is pretty funny.

This isn't a revelation, but I was constantly reminded over the past week. One day, he was passing a stone-shaped speaker by the condo pool, he stopped pointed, and said, “I think that's ROCK music!” Then he nearly fell in the pool he was laughing so hard at his own joke. It was a pretty good joke.

8. Autism can still surprise me. And hurt. And confuse us.

pirate_sloaniebear

Are these the "captains" that have so terrified Billy? Possibly.

pirate_booboo2

Out of nowhere, Billy became incredibly fearful in the middle of our vacation. He suddenly balled up in a corner, with his fingers in his ears, screaming, “I'm so scared!” He stayed that way, off and on, for most of the next 24 hours. When we coaxed him into talking to us, the most we could get out of him was, “I'm scared of captains.” He had seen some cartoon about pirates, and we had been to a restaurant called “Peg-legged Pete's,” neither of which seemed particularly scary.

All we could figure was, like his fear of kangaroos, the fear of “captains” really means something else, some mystery made up of sensory overload, unpredictable schedule and general weariness born of several days of non-stop activity. All we can do sometimes is sit close to them, talk softly and wait it out.

Or, in Dave's case, promise Billy that if we see any captains, we'll “kick them in the peg leg and laugh.” I don't know what sort of effect this is going to have on Billy's ability to empathize with disabled mariners, but as Dave pointed out, peg legs are a bit thin on the ground these days. And it did make Billy laugh.

 

9. Sometimes autism's surprises are really good ones. For instance, even a naval air museum is fun, exciting and hilarious when viewed through Billy's eyes.

SB_Billy_Cockpit

Let's just say that on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation. The idea of spending an afternoon touring various types of aircraft is likely to send me to my bed with the vapors.

DSC_0420

Until I visited one with Billy. He went completely monkey-poop over the National Naval Aviation Museum. He danced around under the giant planes and literally trembled with excitement. He hugged the end of one plane or jet or whatever you call it and said, “I hug you! I love you, big jet!” Then he tried to insist that I close the ceiling bubbly thing over the driver's seat so that “Billy can fly. Billy can FLY!” Dear lord. I don't think so. The sight of an old bi-plane made him fall on the floor in hysterical giggles. Really?!

The museum was free and had an awesome kids play area with a kiddie aircraft carrier, complete with slides (Are there slides on an aircraft carrier? I'd like to think so.) and little helicopter that the kids could sit in. Willow quickly took command of the ship and bossed around children twice her age. I think she has a scary affinity for the military.

So it was a great Spring Break, despite the fact that I never darkened the doors of the spa or the gym and my toes still look like they've been mauled by beavers. As usual, I learned at least as much about myself and what I need to work on as what I learned about Billy. Which brings me to the end of this year's list ...

10. I should really stop making lists.

Who am I kidding? That's never gonna happen.

Reader Comments

Welcome back to Blogland, Amanda! It sounds like you guys had a fun vacation!

"on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation." Best. Line. Ever. I feel the same way! A couple of summers ago while visiting my brother, he decided it would be a good idea to tour the Diefenbunker, which was built during the Cold War to house the Canadian government if there were a nuclear attack...it is now a museum. Let's just say the kids faked interest as long as they could...

I'm a control freak too, but I almost never make lists...

Wendy

I like your lists!

Especially when they're like this! Loved this post - keep 'em coming!

So much better than our Spring break...

Sounds like a great vacation! I agree with your husband...I think peg-legged pirates should be the one prejudice that Billy is allowed. So awesome that Billy has made such great progress! That spontaneous play date is like a dream come true!

I needed to read this

#3 really hit me between the eyes. Right now I'm so wrapped up in the "what we can't do's" that I can't even fathom the future. Thanks for giving me hope!!!

Oh..and my little one has the weirdest fear of cows (cartoon and real). Makes every Ipad game with animals fun. And Chik fil A is on the banned list right now! ha! Glad we not alone in fears of things that have no rational explanation.

Sounds Like a Great Vacation!

It sounds like you had a great time! I'm so glad. Billy's progress is also fantastic!

Lists

A year can make a huge difference. Last year I couldn't stop making lists. This year - not so much.

All things considered, sounds like a great vacation was had by all.

Looks like a really great trip! Beautiful pictures. Have any tips/tricks for the car ride there and back? I think that's our big hang-up. Our kids (both of them) do not do well for after about 40 minutes. We do fine once we're there, but good grief it has to be a great place we're going to make it worth the hours in the car!

I enjoyed this post... I have a daughter who is a list maker and used to be a control freak. That has been adjusted since baby #1 came and she's the one that is due with baby #2 so her grip on control has slipped significantly. My favorite line in this is " toes still look like they've been mauled by beavers." LOL. I'm with you.

Total 9 comments

WW_BillyWes_throw

Reader Comments

Snippets 'N Stuff

Wordless Wednesday? Very clever. Love the pic!

So beautiful. What a shot. It captures the true essence of what every childhood should be: full of freedom, full of joy.

Linked over from Big Daddy Autism. Love the photo today, precious. Just looking around and checking things out. Lovely site!

No need for words

What a great shot!! Stick that in a frame!

Cool Pic!

I mean it! That's a really cool pic!

Total 5 comments

golden_castle

First thing this morning I received a call from Heather at Walt Disney World. In addition to being a WDW cast member (how the park refers to all employees), she is also a mother. She immediately apologized and said that the New Year's Eve bullying episode in the Commissary was not handled appropriately by the manager. "What should have happened," she told me, "is the bullies should have been asked to stop. If they didn't, she would then call Disney Security and they would be removed from the park." Because not only should bullies not have been tolerated within the restaurant, she assured me, but they shouldn't have been allowed to stay inside the park where any child should always feel safe, whether they have a special need or not.

The "safe havens," she explained, are provided in case a guest finds an experience like the parade too overwhelming, and he or she needs a quiet place to escape the noise for a little while. Clearly, they can't stop the parade, but they want there to be a noise-free environment where a guest can get away from it.

She also said that part of her team's job is to report back on our experiences, and let everyone know when there is a failure of communication. It appears that this restaurant manager failed to get the message about what her duties and responsibilities are in the face of bullies, but I've been assured that policy is going to be reiterated to all Disney cast members.

Then she said, "It sounds like your family didn't have a very relaxing experience here, and I'd like to invite you back to make that right." I assured her that wasn't necessary, that a simple understanding of Disney's bullying policy was all we ever needed. However, she insisted on sending tickets for our entire group -- 10 adults and 4 kids -- to come back to Walt Disney World and feel completely safe.

After thanking her for this response, I assured Heather that I would let all of you know that you can feel safe taking your kids to Walt Disney World as well. If your child -- whether they have a special need or not -- is the target of a bully, you can expect a cast member to intervene and ask them to stop. And if they do not comply, that manager should call Disney Security.

I'm not sure when we'll be heading back to the "happiest place on Earth," but I'll feel much more comfortable returning to WDW with my autistic child because Disney has a strong policy against bullying.

Reader Comments

Snippets 'N Stuff

Oh...that is so good to hear! As I began reading your post, I was hoping you'd say they invited you back!

Well done! I hope you enjoy your return trip to the park!

That's awesome! I'm glad they're stepping up! So does this mean you'll be joining up with Lynn and BD?? A new and hilarious version of The Three Musketeers? =)

I'd want more :)

I'm glad she validated your concerns, and I'm not surprised Disney has such a policy. The fact that it wasn't enforced was the real problem and I hope they really do reiterate the policy to their employees. I get so angry at this kind of thing that I'd want a signed letter of apology from the employee, or video of him being berated by Micky Mouse. Or something.

But, barring that, I think you did the best anyone could, and it's great that you didn't let it go.

You Did It! Hooray!

Congratulations, Amanda...glad you kept up the pressure! I'm sure the fact that your readers were doing our best to make sure the story went "viral" helped too! I'm glad WDW coughed up some more tickets for you, but I'm not sure I would want to go back if it were me...

You taking a stand has made things better for anyone who might have problems at WDW in the future!

Wendy

1 (small) brownie point for Disney

Girl, that is good to hear!! God help me if my kids grow up to be that insensitive!
Unfortunately, Disney attracts all kinds. Last time I was there, I felt like I was in a Jerry Springer episode. I hope Billy enjoyed himself the rest of the trip! :)

I'm new here! :-) Sounds like you handled the situation well and staying on top of corporations is the way to go. I'm really glad to hear they are compensating the entire group with another visit. It's the least they can do!

I'll be back!

Hooray!!

SO HAPPY, that WDW did the right thing!! What a relief to know that WDW isn't afraid to admit to their mistakes and try and make it right! I absolutely think you should take them up on the offter to return, if for no one else then for Billy... he deserves it! I'm so happy for you guys!

Total 16 comments

angry_letter_writers

I realize that yelling at Disney is a bit like this.

FROM WDW to ME:

Dear Ms. Broadfoot,

Thank you for speaking with me regarding your recent visit to the Walt Disney World Resort.

I am very sorry for the disappointment you experienced during your family's New Year's Eve celebration at Disney's Hollywood Studios Park.

I wanted to personally assure you that your feedback has been considered taken seriously. The safety and well-being of our guests are of the utmost importance to us in all aspects of our operation. Our Cast Members are instructed to assist Guests requiring assistance and their families to our First Aid stations located in each of our four theme parks. These locations are established areas where your family can seek comfort during experiences like the one you encountered from the actions of other Guests. I am sorry if you felt assistance was not promptly provided to you, and truly apologize for any inconvenience this may have caused you and your family. Please be assured that your comments have been shared with the appropriate Disney management.

Our Guests? feedback allows for our continual growth and the preservation of the magic Walt Disney dreamed about, and I thank you again for your feedback. I am available Wednesday through Sunday between 11 a.m. and 5:30 p.m. EST should you have any questions.

Thank you again for sharing your thoughts with us.

Best Regards,

Benjamin Bradley
Guest Communication Services
Walt Disney World Resort
407-560-2898

****

write-complaint-letter-elephants

If only it were this easy.

FROM ME to WDW:

Dear Mr. Bradley,
Thank you for taking the time to talk to me a week ago about my concerns and for your email below. However, I'm afraid I haven't made myself clear about the problem we encountered at the Commissary in Hollywood Studios.

When I first contacted you, I wasn't complaining about noise in the restaurant in which we dined. My son, who is 4 years old and autistic, was bullied. He was targeted by a group of aggressive, rude and possibly drunk teenagers who found it amusing to blow their noisemakers directly at him non-stop so that they could watch him hit himself in the head -- his reaction when he gets upset.

The teenagers were asked politely by my father to stop. They refused. In fact, they redoubled their efforts and blew the noisemakers almost constantly. When my brother-in-law told them, "You are tormenting an autistic child," their response was, AND I QUOTE, "That's not my problem."

At that point, my family asked for help from the manager. She also asked them nicely to stop. When they wouldn't, she said there was nothing she could do.

Surely Disney takes a stand against bullying. Surely it is not too much to ask to eject bullies from restaurants when they are targeting children, particularly those with special needs who are the least able to defend themselves. I am certain that restaurants like The Brown Derby or Cinderella's Castle wouldn't accept that kind of behavior. Is there a dollar value at which a family can expect a restaurant to provide a safe environment?

There were ten adults in our group and four children. We had paid quite a bit of money for our dinner, despite the fact that the Commissary is one of the lower-cost options, and should be entitled to eat it in peace. The idea that we should have to take our dinner to the first aid station, one of the "safe havens," in order to ensure our children weren't bullied, is nothing short of ridiculous.

I'm glad that Disney has designated certain areas as "safe havens" within the park. But every area of Disney should be a safe haven for any child.

I am going to suggest to my readers, who have been following my communications with WDW on my blog, that before they take their special needs child into any of your parks, they input the number for Disney Security into their cell phones. Then, should their child be bullied, they can call security for assistance, as it seems the cast members are not empowered to protect children.

If you have a better suggestion, I would welcome your input.

I will be posting this letter, as well as your email to me, on my blog at http://www.LifeIsASpectrum.com.

Best regards,

Amanda Broadfoot

Reader Comments

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My hat is off to you for your polite, yet firm response. Well done.

I am SO sorry!

That is so, so galling!!! I read Beth Zimmerman's post and had to follow through here to see it for myself ... because, of course, who could believe that such barbaric behavior is still possible??? And that the manager couldn't be bothered doing his job, or getting security??? I've always hated Disney World, and this just cements my case. I am so, so sorry your family had to go through this ....

I am new to the "Spectrum" via my son's diagnosis but am quickly learning what it means to advocate for my child. You'd think a Disney themepark would be one place you wouldn't have to advocate for a child. Disney's response truly is unacceptable. It makes me sad to know that people can be so obnoxious and hurtful towards a young child, and a huge "family friendly" company like Disney thinks telling you to go to a First Aid station is an acceptable response. I've tweeted about this too (@thankfulmomma) via Beth (Work in Progress)

I am deeply disappointed by the reaction you have had thus far from Disney. How is it fair, or providing a wonderful family experience, when the victim and his family are the ones that have to seek a "safe haven". Isn't the park as a whole supposed to be such?

My family also has an autistic son, and we have made two trips to Disney World... after reading this, i am inclined to not repeat a trip there.

I have just found your blog via the "share" tool from a friend on Facebook... i have done the same.

wow. I'm not sure how i found your blog but my heart just hurts when i think about what your family and little guy had to go thru and how WEAK the response from Disney has been. I hope that with all our support they can step up their policies in order to protect their guests in the future. Those teens should have definitely been kicked out (at the least! i would like to meet them in a dark alley and teach them a lesson or 3!) and I can only hope that KARMA comes around for them someday.

Total 25 comments

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