Sadly, the train broke down halfway around the baseball field.
This past Saturday was the Bash and Dash at Billy's school, the annual fundraiser for the school. (Let's save for another day discussion of the topic of WHY a public school finds itself in a position of having to hold multiple fundraisers.)
Bash and Dash was great: well-organized, fun, and amazingly well-attended. There were pony rides and train rides and bounce houses and carnival games. That's the "Bash" part of the day.
But we started with the "Dash." There was a race for each age group, including pre-Kindergarten, Billy's group.
We had been practicing "racing" for weeks. I'd shout, "Ready, set, GO!" in the back yard and we'd run from one fence to the other. During his ABA therapy, Billy would race Ms. Elyse, I would race Billy; sometimes Ms. Elyse and I would race each other. We talked non-stop about the race.
I still wasn't sure how it was going to work out. Despite all our rehearsal, whenever he hears "Go!" Billy is just as likely to run towards the closest available toy as he is to run towards the finish line. As usual, I debated with myself: about whether introducing him to the idea of competition at this stage was even healthy; about whether the crowds would upset him; about whether he might actually fall and get hurt.
I was ready to pull out of the whole thing. Then I got a package in the mail.
When I opened it, I pulled out a trophy. It was about 18 inches tall and engraved like this:
My mom and dad.
I called them, and sure enough, my mom owned up. "I wanted Billy to know," she said, "that no matter what, he's a winner."
And she was right. Plus, I couldn't back out now that they had invested in what Billy lovingly referred to as "The Statue of Liberty."
Race day dawned bright and beautiful, and we arrived at the starting line with several minutes to spare. Several of Billy's friends turned up, including one beautiful girl who marched right up to him and grabbed his hand in hers, as though she sensed he needed a little reassurance.
As we had practiced, Dave stood with Billy at the starting line, and Willow and I went to the finish. When a volunteer tried to move me out of the way, I explained that my autistic son was planning to run toward me, and if I wasn't standing there, he was very likely to head for that little circle of unattended ponies (the pony rides hadn't started yet). I was allowed to stay.
The boys lined up (girls raced separately). When their little legs started pumping, I couldn't believe how excited I was. I was screaming and crying and shouting for Billy.
Even from a distance, I could see he was beaming with happiness. He was looking from side to side at the crowds lining the race path. Crowds. That was something we hadn't worked into rehearsal.
Billy's in the red shirt!
Rather than run flat-out, he kind of loped along, half-galloping, watching the other kids run in front of him. He likes to chase.
They all crossed the finish line in front of him and I could see Billy laughing with joy. He was happy for them. And he was inches from the finish line.
And then he turned around and headed the other direction.
He was out there on his own, the race was over for everyone else, and he was running the wrong way. I started shouting for him: "Billy, this way! Come this way, baby!"
At that moment, I just wanted him to finish. The other racers in his group were already getting their trophies and medals, and the older kids were already lining up for the next race, but I so wanted Billy to cross that finish line.
No one raised an eyebrow when Billy got the biggest trophy.
Then something beautiful happened. Everyone started joining in. On both sides of the race path, kids and adults were shouting, "Come on, Billy! This way!" And waving him toward the finish line.
Laughing, he turned around. He saw me and Willow. And he started running toward us. As he crossed the finish line and leaped into my arms, there were cheers all around us.
Of course, everyone was proud of the kids who ran the fastest. I would never want to take away from their winning moments.
But at the moment Billy crossed that finish line, we all felt like winners.
Reader Comments
I was reminded recently of some words I wrote almost two years ago. Without looking up the exact sentence, I believe it was something along the lines of “I have no doubt that by the time he starts kindergarten, Billy will have caught up with his peers.”
Well, we're facing down the last semester of pre-K now and starting to think about Kindergarten. Is Billy “caught up?”
I don't even know what that means any more. Academically, he's pretty much learning at age level or slightly ahead. Anything that can be memorized, he nails immediately – whether it's his work on not. Sight words, songs, and even all the names of the United States are no problem He has even memorized all the other kids' social stories (as well as his own), so that if someone gets in trouble in class for not following directions, for instance, Billy immediately starts reciting the “Following Directions Book.”
In some areas, he's developmentally still lagging. Socially he has more in common with his (neurotypical) two-year-old sister than his normally developing 4- and 5-year-old classmates.
But then, in a lot of ways, he's just different. Not behind or ahead. Definitely not less. Just different.
His singing is one example. He loves to belt out “If I Only Had Brain,” from the Wizard of Oz (a current favorite), throughout nap time. Left to his own devices, he would add a soundtrack to every moment of his day.
And he has absolutely no desire to please anyone. He doesn't want his teachers or his parents to be unhappy with him – and will, in fact, shout, “Happy!” and point at us, as though he can command emotion – but the idea of “If I finish this worksheet, my teacher will be really pleased,” doesn't mean a hill of beans to him. He's more motivated by “The dry erase board is more fun than this worksheet,” and is, therefore, going to leave his seat and go color on the dry erase board the moment his aide's guard is down.
So Kindergarten is coming up. And his wonderful pre-K teacher, Ms. Jade, has begun discussing some of the possibilities for next year.
One popular option, she told me, is a “varying exceptionalities” classroom, where Billy could get one-on-one attention for his academic work. Then he would, when it was practical, go into his mainstream Kindergarten classroom.
When it first dawned on me that we were discussing putting him in the special education class for most of the day, I felt like I'd been punched. Currently, Billy's in an “inclusion” pre-K class, where half the 3- to 5-year-old kids are normally developing and half have a special need of one kind or another. He has one teacher and two full-time aides, with other specialists who come and go on different days.
But the varying exceptionalities – or VE – classroom may end up including just Billy and one other kid his age. Of course, he would have a mainstream class for part of the day, but would he be considered one of them? Would the other kids treat him as an outsider because he didn't spend most of his day with them? I thought about the recent birthday party where almost the whole class attended; would he still get invited to those?
The practical side of me realizes that Billy still needs much more attention than he can get in a mainstream kindergarten class. He will progress academically much faster if someone can keep him at his desk and away from the dry erase board. And I hear them when they say it's very hard to teach when one child is singing “Ding-Dong the Witch Is Dead” throughout math.
I'm so used to being in “fight” mode for my child, but this time, I don't even know what to fight for. Or if I should, for once, just chill and see what happens.
I question every inclination I have. If I pushed, like many parents have successfully done, to have him mainstreamed full-time, would I be setting him up to fail? And if he spends most of his day in the VE class, will he fail to make friends? Will there be any part of his day when it's OK to follow his “yellow brick road?”
It makes me kind of sad to think that we'll be teaching Billy, “As soon as you can stop singing all day long, you can join the 'regular' kids.'” I love that he feels the urge to sing all day – but I'd also like him to be able to know how to add.
So many of you have faced this dilemma. Some of you, I know, have opted for special schools. Some have opted for homeschooling (You.Are.Saints.). And some of you have had great success with the public school system.
I would love to hear your thoughts about how you made these decisions for your child(ren). Have you ever had to change directions? Have you ever regretted any of your decisions? If you could give me (and other parents) one piece of advice on this subject, what would it be?
As always, thanks for being there and chiming in.
Reader Comments
I don't have any answers, but I am anxiously awaiting the replies. We have always homeschooled, but are enrolling GL at the local high school in the fall as a transition (we don't know how many years from now) to some sort of vocational program. We're waiting for a callback from the school for testing. I don't know what placement they'll recommend or what services they'll offer, but I am SO tired of him being denied services he's entitled to just because he's not in the public school.
I'm in the same boat as you. We don't have a different word for the "special ed" class. It's just that, special ed. We checked out their pre-K SE and it had children with physical as well as neurological disabilities but I had the same questions in my head as you. Ultimately, we chose to pursue our ABA and integration but this is just at pre-K level.
I, too am eager to hear other responses because my son is almost 5 (in May) and we will have to make the same decision, I'm sure. But I don't (selfish here) really care how hard it is on the teacher to teach with my son in the class. I want him to integrate with NTs. It sounds like Billy and my son are both cognitively able to grasp the material (more like above K level) but socially it is not so. Right now, from my gut, I say I will probably Demand an ABA trained aide in a NT classroom because the social behavior can be and should be (IMO) trained during regular classes. If it appears to disruptive, go back and have a meeting about it. Until then, go for NT, still IMO with the same questions as you. I think I just figured out what I want...through you. Thanks. (Also if they try to deny ABA aide for K class tell them this will be a free and appropriate education to which you are entitled ).
I wanted to address your concern about your son not being included if he is in the ve class. All during school there were two kids with whom I shared many classes through elementary and middle school. Both of them were always included fully in every aspect of class and its social flows. One of the students became a very good friend of mine. The two of us still keep in contact to this day. I hope that their experience is what Billy has as well.
Similar Situation
We're in a similar situation with Mikey, but he's only going to be in Pre-K3 in the fall. He didn't qualify for the program Billy is in. We have opted for a private three-day-a-week Pre-K3 where his sister will also go in the fall in Pre-K4. We're hoping that with the advice of a CARD representative, the teacher will be able to help him with his social deficits. He's also really bright, so I'm not so worried about whether or not he'll pick up whatever concepts they teach. I'm more interested in getting him integrated with NT kids who will model typical social behaviors. He's such a good imitator of his sister and cousins, that I'm hoping he'll jump right in with the other kids. I too am concerned about how his behavior will affect the teacher and the class, especially since the teacher is not an expert with kids on the spectrum. Right now I'm hoping and praying for the best. If things don't feel right once we're there, there's nothing stopping us from changing our approach. And we may have to change approaches from year to year. I'll be following how things work out for Billy since we're in the same town, it's helpful to know how the system works here. Thank you for being such a great resource!
Completely Unqualified
We have had incredible luck with the public school system. Over the years we have toured dozens of private schools but keep coming back to the public. Griffin has been in VE and SVE classes since pre-pre-school with varying degrees of mainstreaming. Right now Griffin is in a VE class in the local Middle School. He goes into General Ed for Lunch and PE. He is having the best year of his life. Who knows what next year will bring or how our life may have been different if we chose to home school or send him to a special school. Right now it looks like what we've done has worked out really well.
I'm so glad you're asking this question! It sounds like Caleb and Billy are in identical classrooms and are on very similar educational paths right now so I'm dying to hear people's input. As of now, we're considering using the McKay Scholarship for CCS. We visited during their open house and met one of the kindergarten teachers. She has around 20 years' experience working in the public schools and her specialty was students with autism. They have a half-day option for kindergarten, which is really tempting. The only part of the day Caleb would miss is lunch and naptime. I like him eating lunch with his class, but he doesn't sleep and gets pretty disruptive during naptime. Wizard of Oz is also a big favorite here!! But then again, I start to second guess myself and wonder if they can (or be willing to) handle Caleb's quirks. I'd hate to get kicked out of kindergarten. ;o)
I think you're in the best position to know what's right for your son. In my case, they were initially going to offer my daughter to be in a regular classroom with minimal support (45 minutes of a resource specialist a month) or the special ed classroom, but mainstreamed for academics. Neither of these choices made sense to me. During the IEP, things changed and we were able to get what we wanted--a typical classroom with a behaviorist. This has worked great for us. My daughter got to keep her behaviorist for first grade. She's doing pretty well, so I'm not sure she'll get the behaviorist for next year.
Before my daughter started kindergarten, the Assistant Principal did express concern about my daughter being in a typical classroom if there wasn't going to be an aide. The demands in these classroom can be a lot and not every child on the spectrum can handle it. We took the plunge and the AP later agreed that this was absolutely the right choice for my daughter.
You can always try one thing and change it during the year if you don't think it suits your son.
Good luck!
For my wife and i, we knew "something was up" with S when he was in preschool, but we struggled with getting a diagnosis until he had already entered the school system. Since then we have had an IEP and worked on updating it each year. While he is "mainstreamed" he has to have an aide with him at all times. Even though his IEP states he is to have a one on one aide, his aides have often been assigned several students at once.
So, for us, we sort of stumbled into a mainstreaming situation and been going with it since.
If duct tape was an option, my six-year-old gypsy would spend her day crab walking around the classroom with a chair affixed to her butt. I know that a teacher would love to tape her to a seat, but I seriously doubt that it would do much more than present the girl with a challenge that she would be more than happy to overcome. She is six, and in kindergarten. She should be in first grade, but we held her back a year to help her acquire basic skills. Academically, my daughter is now ready to move on to the first grade. Emotionally, she is ready to enter kindergarten. She has no children her age that she considers friends. In my daughter’s mind, her best friend is my wife’s 30-year-old, married, co-worker and girl friend. We know that in order to function in a main-streamed classroom, my daughter would need a para by her side every minute of the day. It is the only way she would have a chance at remaining focused on her work, as well as the only defense against having her disrupt learning for every other student in her class. We agree with our behaviorist doctor that the biggest thing our daughter needs is to learn how to work independently, without the constant, direct supervision of an adult. The best program that we developed, in conjunction with our daughter’s speech therapist, occupational therapist, school counselor, and an extremely caring preschool teacher, is to have us homeschool the core subjects. We send her to the local school for 90 minutes each day. She receives her speech and occupational therapy, and attends “extras”: art, music, computer, and PE classes. This was the best way to meet her interesting mix of needs. She does not interrupt her homeschooling brothers in the manner that she does a classroom full of children her own age. After a semester with children her own age, she has yet to learn any of their names. This socialization situation does not bother me. My daughter is a happy, energetic, care-free girl. When she desires friends her age, she’ll make them.
I forgot to add that while she is in school, my daughter does have a para. She is supposed to be using the para less by 25% each quarter. First quarter, 100% para help. Second quarter, 75% para help. And so on. The school isn’t being as cooperative with that goal as I would like them to be, but they are trying.
I'm sorry you're facing such tough questions, Amanda. But if there's one thing I know about you, it's that you'll think think this through, and you'll absolutely make the right decision for Billy, whatever that may be. Just let your love and instinct guide you. This will work out, because you know him better than anyone.
I don't have any direct experience with autistic kids, Amanda, but Hope has learning disabilities that require her to have a "Special Education Plan." While I appreciate the extra help she receives, I think she experiences a certain amount of stigma from her middle school classmates.
I agree with Maura...you're the best one to make a decision about your own child!
Hugs,
Wendy
Just found your blog through the link on Thinking Person's Guide to Autism and had to chime in on this post, in part because when my Elliot was pre-K he used to sing ALL the time, often belting out, "I go to the hills when my heart is lonely" from the highest point on the playground and reading about your son so reminded me of that :)
Also wanted to encourage you regarding the kindergarten question, not to tell you what you should do but just to say what worked for Elliot. For 2.5 years he had early intervention in a small school run but the county's Board of Developmental Disabilities...and then it was time for kindergarten...and Elliot had to move on and out of that school because his intellectual abilities were too high to stay which is a GOOD thing, but also presented a major challenge.
Elliot was terrified for awhile of the big school (kindergarten orientation was an overload/anxiety disaster), and I was terribly worried, and we had some rough days early on...BUT he is now doing really, really well, so well that volunteers have remarked about how much he has grown since the beginning of the year. Elliot doesn't have a full-time aide, but his speech teacher watches out for him and steps in whenever there are difficulties in regular classroom (and she and I keep in very close contact via notebook and email about how he's doing), he has a special place in the classroom just for him where he can go to to calm himself down or just "take a break" when he needs it, and he has access to OT and speech and other special services throughout the week.
The lunch room can be overwhelming, but he has headphones he wears to block out the noise, and he's the odd kid who kicks around in the mulch looking for treasures at recess, but sometimes kids join him and help him look, and sometimes he has good give-and-take interactions with them. He's not teased or bullied, just still trying to figure out how he fits. Elliot's speech teacher has done an AMAZING job not only with him but in reading books to the rest of the class about kids with sensory challenges that can result in strange or disruptive behaviors at moments, and she intentionally engages him in playing with other kids, either during speech or (now that the weather is starting to warm) at recess.
So for our family, I am now glad we let Elliot be in a place to try these new things and to have constant support (from his classroom teacher, speech teacher, specials teachers, bus driver and aide--he rides a special ed. bus). It IS a hard call making that decision--there are so many worries for you and for Billy. But IF you can trust the people who will be working with Billy (and this was key for me--I TOTALLY trust his team--his speech teacher is amazing at knowing what he needs and problem-solving to get through roadblocks that sometimes get thrown up), then they can be flexible and adapt to his needs, make whatever changes are necessary along the way.
Good luck to you as you work through your options to find the best one for Billy!
Inclusion or not
I am a special education teacher, but first I am the mother of a son with a disability. My son was born three months prematurely. He is grown now and in college. His main problem was attention issues and slow processing issues. He also had a hearing loss in one ear.
He was in inclusion classes through middle school then when he got to high school they offered resource classes - small classes for each subject for students with special needs. Inclusion was a nightmare for us. The students with the ability to ask for help or the most behavior issues got the help. My son was very shy and wouldn't ask for help. He did great in the smaller classes and felt so much more comfortable. He didn't seem to care about the social stigma because there clearly is one - he wanted to be taught in a place where he was comfortable. I teach in a resource - small class - now at the middle school level. I have the flexibility to give special attention where it is needed. I have also taught in inclusion classes at pre-k, elementary 1st and 2nd grades and high school all grades. For my own child, I preferred the smaller resource class - but it does depend on the teacher too. There are so many factors that come into play. Your child personality plays a big part. Are they really social? My son was not. Will they be really ashamed to be separated from their peers because the other children will notice and some of them are very mean others are really sweet and will be lifelong friends. I advise that you get all of the facts about your school. Go see the classes, meet the teachers, and see where you think your child will feel the most comfortable.
Total 14 comments
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
Yes!!
Hallelujah! I am so, so glad you stayed on top of Disney about this. I only wish those *&^hole kids had been escorted out, but this is great news.
Yay, Amanda!!! This is what should have been done from the first moment they heard back from you!! So glad they made it right! Now, when you go back, you are armed with the policy and the name of the employee to talk to!! And I'm feeling that you probably won't be headed back on any holidays again? ;)
Sounds like WDW finally handled their employee not handling the situation right, right. Hope all cast members get the message.
Well, my child has never been bullied at a Disney property, but the thought of it possibly happening is very upsetting to me! Do you think Disney Corp. will be kind enough to give us free tickets for one of their cruises to the Bahamas?
Just wondering!
On a more serious note, while it's good Disney has owned up to what THEY handled wrong, I think that not only do they need to train the restaurant manager, but clearly the customer service rep you initially spoke with needs to be trained as well. I'm guessing he was fired for handling your complaint so poorly!
Good job, Amanda! Also, yay to the power of the blog!
Outstanding... i am very glad to hear of this response... and that it was in person, and NOT just some form letter, etc.
from yur cmment about Dr oz article-LJ Rudy on 2-15-11
very interesting what yu wrote...i had a sibling brother that survived 21 yrs of rare cancer...i'm 51 and he was 10 yrs my jr... i grew up most all my life wondering if i would be next...especially when my dad died of cancer shortly after my brother died. i was in my prime...35 yrs old. seems to me that ther's many ways God can take you frome this world...now my daughter age 9, was diagnosed of aspergers' at age 4. she has night terrors and has asthma. my 7 yr old sn on the other hand is perfectly normal. i have no wise words to give or share other than that everyne must always leave life's decisions and choices into another's hand(mine is the Holy Spirit). if do what yur heart tells you to do, nine times out of ten, it'll be right. i live life as if every day is going to be the first day of the rest of my life. and when things get me down, i always say to myself that ther's someone out ther that has it a lot worse.
Thanks so much for the update! While I'm so glad someone finally took the time to understand the issue and problem -- it's too bad that the problem had to happen in the first place. Those bullies should have been punished then and there.
Yay so glad you finally got the response you deserved- huge kudos to you for sticking with it and making them understand how serious the situation was!
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!
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!
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! :)
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
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.
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? =)
Well done! I hope you enjoy your return trip to the park!
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!
Total 16 comments
First of all, I want to say thank you to everyone who took the time to express their opinion and support here -- as well as those of you who took the time to contact Disney.
I'm playing phone tag with someone in their offices now, but I feel much more confident that our concerns about bullying within the park are being taken seriously. I promise you that I will report back here after I've managed to connect with my new contact there. Your support means the world to my whole family!
You may have noticed a few new changes we've been making around LifeIsASpectrum. For a while, I've wanted a way to share blog posts from some of my favorite writers, websites with great learning tools, and significant resources for parents of kids on the spectrum.
I've started a new sidebar where I can highlight a few of those recommendations from time to time. If you have a suggestion, please feel free to shoot me an email or post a link in the comments section of this blog. I love finding new blogs, education sites and special needs resources.
I've updated "Billy's Story," to include the progress we've made over the last year since I started this blog. There probably isn't much that's new for those of you who kindly stop by here regularly, but I know that that link is the first start for a lot of folks finding me for the first time, and I wanted them to see how far we've come. It was uplifting, actually, to summarize all the breakthroughs. Looking at it in black and white helped me realize how much we have to celebrate!
Also, I have a new Life is A Spectrum page on Facebook. Now you no longer have to "friend" me and get inundated with my family photos in order to get updates about the blog and share stories about from the spectrum ... though if you're already my Facebook friend, you aren't allowed to un-friend me. I'm too fragile for that.
So please bear with us as we continue to make changes over the next few weeks. If you find any bugs, don't hesitate to let me know (Thank you, Wendy, for spotting the one with the sidebar!), and I'll pass them on to my in-house IT guy (Dave).
And now, for a scene through the eyes of the spectrum, because I couldn't just leave you after having done nothing but a bunch of housekeeping:
EXT. OUR STREET - MORNING (barely).
It's grey and very very foggy and damp outside. I'm holding Billy by his hand, walking him to school, which is just around the corner. I flat-ironed my hair the night before, and now I can feel the frizz creeping back in. I literally turn up my collar to the cold and damp, a la Simon & Garfunkel's "Sound of Silence." Yeah, I'm in that kind of mood.
Suddenly, Billy stops.
I turn to look at him. He's staring around him in wonder. He's waving his hands around him, like he's trying to grab the wisps of fog.
BILLY: Mama ... what a BEAUTIFUL day!
*
And then I look around me, and you know what? He's right. On the "beautiful day" spectrum, this one is right up there. Foggy and weird-lighted and grey and ... beautiful.
I hope your day is beautiful too.
Reader Comments
Sidebar
I love the way you are highlighting blogs on your sidebar. What a great idea and so much more personal than a blogroll.
Love it.
Glad to hear that you are not just being dismissed out of hand, even if you don't have a firm resolution with Disney yet. I have shared this story with several friends and (soon) via my own blog as well.
It is always good to connect with other parents who work with ASD children. Both our own and others. Thank you.
Thats OK change is good. Blogs will end up morphing and evolving into other things.
I saw someone on Twitter share a link to their blog where they angrily talk about what you posted. People sure love to get behind hating Disney!
Beautiful Day!
Thank you! I needed that reminder to see the beauty in the fog instead of always wishing it would clear away!
P.S. @ Cheryl re:hating Disney
It was probably me, a retweet of my tweets, or a tweet from my blog, that you saw on Twitter. I didn't intend it to sound that angry and I'm sorry if I came across that way. I don't HATE Disney. (I don't LOVE them either. I think they have slidden considerably downhill and Walt would be shocked!) It just happened to be Disney that was involved in this unfortunate incident and I felt that they needed to be made aware that people expect better from them. I also felt, and still do, that they owed Billy and his family more of an apology than they have yet been given. But I would have "kicked up a fuss" no matter where this had happened ... not just Disney. Beth
Hi Amanda,
I just wanted to drop you a note that i have linked to your blog from mine. While i do mentioned Autism from time to time, it is more of a journey journal than anything. But since i am linking to your blog i wanted to let you know.
I think you are doing a great thing blogging about your dealings and what you have learned/are learning. Thank you for taking the time to blog.
~ john
aka 'samurai'
Tooting my own Horn
http://findmyaddress.blogspot.com/2010/11/church-with-special-needs-child.html
http://findmyaddress.blogspot.com/2009/05/all-those-who-suffer-in-body-mind-or.html
Beautiful Day
You know what? Billy is right. It is a beautiful day.
I'm so glad you're making headway with Disney, Amanda. It's people like you who ensure Disney is a positive experience for everyone. Ever child deserves a happy and safe environment.
I love the updates on your blog! Nicely done, friend!
Hugs to your Billy and his talent for seeing the beauty around him. Happy weekend!
Thanks for featuring me in your sidebar, but I hope you know that you have to keep it there forever because my ego is also fragile.
I hope that it is cloudy and rainy when I get down there! I'm bad in the heat....
I've been out of the loop for a few days! I love the new sidebar and I'm so glad to hear the mouse is taking time to understand the root of the Disney issue.
Total 12 comments
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
****
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
Unbelievable
I am truly shocked at Disney's response or lack thereof, I am sad that this was the response you received. I think every one expected more from them than,
"thanks for telling us about your autistic child being tormented, we appreciate it."
This is really nothing more than a weak attempt to placate you and really it comes off as more of a slap in the face than anything else. I know I will certainly not being going to Disney with my son, why on earth would I spend a small fortune to have my child have anything less than a wonderful experience? Bullying should not be tolerated anywhere, at anytime by anyone. With so many stories of bullying in the news today, I am more than a little appalled that Disney would not empower their own employees to take the appropriate actions to protect a special needs child.
Please let me know if you receive a more appropriate response from them in the future, until then, I know I won't be visiting the parks.
Sincerely,
Kathy Cook
Rosa Would Have Been Proud
Great job, Billy's mom. We did not ask for the role of advocate for a child with special needs, but we will take that on (and more) for our boys.
seriously?
why don't they just put you in a corner and poke you with a stick?
that is a weak-ass response that incurred no more work than scratching one's butt. As a previous poster said, "thanks for letting us know. Hope you come back." jerks.
Let's just keep giving credence to bullies, and eventually they'll run the show. That's how it has gotten over here at Universal Studios in LA. Ridiculous.
Keep makin' a stink, girl. The one thing Disney DOES understand is press & the media.
Snippets 'N Stuff
I think you had a brilliant idea to share your story with us. Your readers GET IT, and our heart's ache knowing you had to experience something so awful.
Oh, Amanda, I am just stunned about your experience and how WDW has made the whole thing that much worse. Our Disney trip is in three days, and I must say this adds to my anxiety a bit. I was really hoping they were going to be more supportive and possibly mention how they would fix this for the future...maybe even comp you some dinner vouchers or something! :) Instead they are adding insult to injury. I am hoping that they will still do right by you. Pray for us in the mean time!!!
Beyond Horrified!
I just hardly know what to say to this but Disney definitely needs to be held accountable! I have tweeted this article and shared it on FB. People need to know, and let their offense be heard, so it doesn't happen again!
Disney Can Suck My.....
I think the solution is that next time you cower in your car, hoping obnoxious teenagers don't follow you into the parking lot. Maybe the employees can use the safe haven locations?
You guys are the best
I can't tell you how much all the support has meant to me, to us.
I am really not comfortable in the position of "squeaky wheel." At least, I didn't used to be. Most of the time, we're just delighted to blend in and move with the flow -- if Billy's having a day in which that's possible. We don't go around looking for fights; we just want to get through a day with more joy than anything else.
Having said that, I'm willing to fight for my child. And being the mom of a child with special needs has given me a certain protectiveness towards all people facing more challenges than the rest of us.
My argument on Billy's behalf really ended on New Year's Eve. He's fine. Luckily, he was in no way permanently injured by the bullies, physically or emotionally.
But I keep thinking about the next child who has their trip to the "happiest place on earth" ruined by bullies ... the next family who blows their vacation budget on a Disney trip, only to spend it hiding in the first aid station.
All I want is for them to empower their employees to remove bullies who are targeting children. That doesn't seem like too much to ask.
Again, I appreciate all the kind comments and the support!
Awesome, Amanda! Awesome, awesome, awesome. I love how you're not backing down, and even better, I love your approach: "Listen, if you don't have a solution, I'll tell you mine. And by the way, mind who you're dealing with, Disney. I'm a woman of influence.
You're my hero, Amanda. Excellent work.
Reposting to Facebook...
Awesome letter, Amanda...I will be reposting a link to Facebook so that my 200 friends are aware of how you and your family were treated! I would suggest that other readers do the same...strength in numbers!
Please keep us up to date!
Hugs,
Wendy
Awesome job!
Thanks for taking a stand! A future trip to Disney may be a long way down the line for us, but I'd love to make it a reality for the kids at some point. Hopefully, by then, there will be new policies in place!
We will be there in 2 weeks...
I'm really surprised at their reaction and am curious to see how they respond to your last letter. I thought that they didn't serve liquor anywhere in their parks? I'm hoping that the bullies don't like princesses or It's a Small World...
Amanda~
I am appalled at the lack of concern at all levels. I am only one, but when I read about this on my daughter's blog (Beth, A Work In Progress), I decided I could do something. I have added it as a hyperlink Facebook post for all my friends to see. I believe I will write a personal message to WDW as well. I hope it helps pass the word and word gets back to WDW that we are not going to sit back and take it anymore.
M. Sue Moore
They should be ashamed
I linked over from Beth Zimmerman's blog. I am astonished about how you were treated and the letter they sent you. I've already sent them an email linking to your post telling them that they should be ashamed and to not be expecting any visits from the Bates family until they make a commitment to protect children inside the park.
Are you kidding me!?!?
I'm saddened by their response. It feels less than understanding. Perfect example of being too big to see what's important. I'm so sorry your family experienced this. Shame on WDW!
Wow.
Wow, Amanda. This is my first visit to your site, and it looks as if I've happened by in the midst of something big. To call Disney's response "shocking" and "disappointing" would be understatements. Good for you for advocating for your child and for speaking out against bullying.
Incidentally, I dropped by to introduce myself. I'm Sue, aka Wonder Twin Mama from Southern Momentum. I thought it would behoove me to get to know my fellow contributors. Love the angle that you bring to SoMo!
I'm so sorry to hear about this. While I doubt Disney will attempt to properly rectify this situation I am mostly sad about the fact that people exist who purposefully torture a four year old in such a manner.
I hope you will find some resolution to this. I wish I could tell you it gets easier, but I have found that no matter how old my son is and no matter how I explain it - the majority of society will never understand or be helpful. It's a sad truth.
Good luck.
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.
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.
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 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 ....
My hat is off to you for your polite, yet firm response. Well done.
Total 22 comments
Wonderful!
Tuesday March 01 2011 09:58:02 am
JDinTLH
I needed to read this today! Wonderful story!! Let's race during spring break!
Tuesday March 01 2011 10:34:54 am
Maura
I truly teared up at this post. Beautifully written, Amanda. It sounds like Billy is being raised in a wonderful community.
Your parents' trophy gift has to be one of the most thoughtful, insightful gifts I've ever seen. Kudos to them and to you for the love and confidence you share with your beautiful boy.
Tuesday March 01 2011 10:45:49 am
Beverly Lewis
I confess I teared up too. There are powerful lessons in this story. I like how you let them speak for themselves. So cool how you took a risk and won - talk about modeling for your children! Great pictures too. He's a beautiful child. Could he be loved more? I don't think so.
Wonderful
Tuesday March 01 2011 10:55:23 am
Erika
What a lovely and genuinely delightful post. I'm sorry we didn't see you there and that we missed Billy crossing the finish line!
Fast-twitch vs. slow-twitch fibers
Tuesday March 01 2011 11:13:24 am
Antonio
I think Billy realized that he's more of a long-distance runner versus a sprinter, and this was his way of saying "let's see how many of you can turn around and keep on running!". :-) Check under his bed for a copy of "the tortoise and the hare", I'm sure that's where he got the inspiration!
Hooray!
Tuesday March 01 2011 01:33:03 pm
Papa Bear
Hooray for Billy! And hooray that, if only for a moment, everyone else got it, too!
Tuesday March 01 2011 03:10:14 pm
Karen V.
Yay for Billy! And everyone that cheered him on! This is a great story about never giving up and receiving an award that is much more than a trophy (but the one from your parents is especially nice)! Thanks for sharing such a wonderful day.
Tuesday March 01 2011 04:41:26 pm
Ruth Creamer
Mandy, I love all your articles, but this one especially touched me today! You are such a special mommy and Billty is such an exceptional little boy. *I'm so glad he "won" - I n our eyes he is a winner every day. God gives special children to special people - I truly believe this.
Awesom
Tuesday March 01 2011 09:04:16 pm
Big Daddy
Awesome from so many perspectives. Hooray for Billy's grandparents. And the other kids in his class. Most of all, hooray for him.
Snippets 'N Stuff
Tuesday March 01 2011 09:05:13 pm
DeeAnn Lancaster
I LOVE this! He has awesome grandparents, doesn't he!? :)
Wednesday March 02 2011 06:22:15 pm
writerwoman61
I reposted this on Facebook, and this was my Aunt Connie's comment:
"Wendy, I read this and cried. I, too, cheered this little guy to the finish line. Your friend writes beautifully. You do, too. I love you. Thank you for sharing."
Wendy
Go Billy!
Wednesday March 02 2011 06:46:00 pm
Jennie B
I loved this! Definitely tearing at the end, and so happy he crossed that finish line with the support of a whole community behind him. And what awesome grandparents he has to think of that trophy.
Saturday March 12 2011 01:53:20 pm
Brenda (mamabegood)
Amanda, I wanted to tell you all a whole buncha lovely compliments, delightful insights, and inspiring poems ... But after I got through reading the 512 comments, my brain has been erased. Love your blog.
Friday April 01 2011 08:55:34 pm
Katybeth
What a gift Billy's parents gave the community that race day. Your boy ran the race but you put your heart on the line.
Billy I suspect with go far.
?
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Total 15 comments