LIFE IS A SPECTRUM
INT. BILLY'S BEDROOM – NIGHT.
I open the door to find Billy lying on the floor, arms at his sides, legs together, toes pointed. There is an intense look of concentration on his face.
ME: Billy, what are you doing?
BILLY: (without hesitation) I'm playing luge.
A beat.
ME: You mean the sled thing that goes down the ice chute?
Another beat.
BILLY: Mama, will you play luge with me?
CUT TO
A few moments later …
Both of us are now lying on the floor, side-by-side, with our toes pointed.
BILLY: Mama! Are you winning?!
Yes. Yes, I am.
Billy has become really interested in feelings lately. "Mama, how do you FEEL?" is a frequent question.
And he squints his big blue eyes and seems to really concentrate as I give my answer.
He seems dubious of simple emotions lately: happy, sad, silly and tired no longer cut it.
So I've tried to introduce slightly more complex emotions like frustrated, peaceful, confused, etc.
Which brings us to ...
INT. BILLY'S ROOM - NIGHT
It's bedtime. We've just tucked in, had a final story and he has said his prayers.
BILLY: Mama, what are you feeling please?
ME: (thinking about it) I feel peaceful. That's a quiet kind of happy that's good for bedtime.
He squints his eyes as though he doesn't believe me.
ME: And hungry. I have to go have my dinner now. How do YOU feel?
He considers this for a moment, staring thoughtfully at the ceiling. Then his eyes return to mine.
BILLY: I'm concerned.
ME: Concerned? That's a big word. Do you have a problem?
BILLY: Yes.
ME: Tell me about it. What are you concerned about?
BILLY: (emphatically) Mascara.
A beat.
ME: Mascara? Why are you concerned about mascara? Do you not know what it is? Do you not understand what it's for?
Another beat. He considers.
BILLY: Yes.
ME: Well. Mascara. It goes on ladies' eyelashes to make them ... um, darker and longer ... it's kind of like ... paint?
Billy's look has evolved from concerned to what I would call "alarmed."
ME: It's dress-up. Let's just leave it at that. No cause for concern, OK? Absolutely nothing to worry about with mascara.
Then I kiss him on the head and turn out the light.
BILLY: (in the dark) Mama? Are you peaceful?
ME: Yes I am.
What a Sweetie!
Billy sounds like he's doing great! You must be so proud!
So funny and sweet
What a cutie-pie! I can't imagine having to explain mascara. So many things we do sound pretty ridiculous when you try to describe them :)
Feelings
Aw, that is so cute he put so much thought into mascara! It's great he's learning so much about feelings. I swear, half the kids in my son's 3rd grade class were never taught a lesson in feelings!
Mascara
Mascara concerns me too. But not as much as the drug that makes your eyelashes grow like weeds.
That is so sweet. They really keep us on our toes! I never know what might come out of their mouths next. =)
Snippets 'N Stuff
Mascara? I wonder what brought that on? Such interesting minds our children have!
Total 6 comments
Both my kids have stomach flu again ... which reminded me of the last time this perfect storm of illness hit our family. Because everything in this post pretty much still applies, because my kids have probably passed this on to any number of other unwary children in their classes, and because I'm just this lazy, I'm going to repost my thoughts on ...
Sickness and Autism
Originally posted: 02/19/2010 10:55 am
I'm starting to think our family is being targeted by some insidious form of biological warfare. Their weapon of choice: stomach flu. Brilliant when you think about it: no one suspects foul play and you slowly sap your targets of their will to dress themselves.
I'm not sure what the goal is of this particular terrorist cell, considering we have most of our assets tied up in our extensive collection of Thomas the Train engines. [update: We have diversified into solar system toys and iPad apps.] And we don't have time for any political activism. Heck, we don't even have time for physical activism.
But we're sick again. And when Billy is sick, it's like living with a dozen sick children. Everything is so much worse, so much more terrifying for him. For a child sensitive to the slightest changes in his sensory input -- vestibular (balance/gravity) and olfactory (smells) being some of our particular bugbears -- having a stuffed up head and upset stomach is his idea of living hell.
Actually, I should say that it's one step removed from his living hell: True Hades would be sickness and a visit to the doctor. He has an absolute terror of the pediatrician's office, or any office that looks like it might be harboring a pediatrician somewhere. He had a complete meltdown the first time we visited daycare, because they had a window at the front much like the doctor's office.
We don't go to the doctor unless absolutely necessary. He does get vaccinated -- we have that to look forward to again on his fourth birthday. [Note: we survived that visit amazingly well in the end.] And he's had stitches and antibiotics at various times in his life. But finding a doctor with the patience and bedside manner to deal with what some people see as histrionics is rare. Our hometown doctor, Dr. Greg Sloan, was always amazingly patient with Billy, even though pediatrics and certainly autism were not his specialties.
We've adopted a certain routine when it comes to the doctor, which doesn't eliminate the problem, but does seem to minimize it to a degree:
1. We make sure the doctor's office is well informed about Billy's autism and how autism manifests itself in Billy. Every autistic child is different, so they should know ahead of time that he's strong, likely to be very scared, and may scream. We also warn them not to touch his head unless absolutely necessary.
2. We start talking to Billy about visiting the "Nice doctor" early in the day. We get out his toy medical kit, give his bear "Tah-Tah" a quick check-up, read a few books about visiting the doctor, and let him give us a checkup, checking our heart with the stethoscope, checking our temperature, etc. Then we let him take his doctor kit to the pediatrician.
3. Whenever possible, get the last available appointment of the day. If he does get upset, then we don't have to worry about upsetting quite so many children in the lobby. Also, it means that it we have to wait, the lobby isn't crowded with other new people, which can upset him when he's sick.
4. Weather permitting, one of us strolls him around outside, while the other waits indoors to hear his name called.
5. We insist on the thermometer that can be gently run across his forehead. He still doesn't like it, but it beats the pants off the one they have to stick in his ear.
6. If the doctor is wearing a white coat, ask them to please remove it before coming in the room. And we give them the warning about touching his head again.
7. Whenever possible, we touch Billy for the doctor, such as holding the stethoscope against his chest, using the thermometer, etc. We obviously can't vaccinate him, but the less he gets touched by a stranger, the better.
8. Hold on tight and keep telling him we love him.
With any luck, we won't have to go to the doctor with this round of flu. But I've been reading "The Berenstain Bears Visit the Doctor" just to be on the safe side.
Awwww...Hope everyone is feeling better soon. Sending virtual popsicles for the kids and vodka for mommy. =)
I hope the kids are feeling better soon, and that no visit to the doctor is necessary...
Hugs,
Wendy
I hope everyone is feeling well soon!
Total 3 comments
As I reported last week, Dave was out of town for nearly a week. Upon his return, this smiling child greeted him ...
(Billy was there too, but he ran past so quickly there wasn't time for a photo.) Almost immediately *I* had to leave and go out of town overnight. The last time I left, BILLY MADE A CAKE. This trip, I returned after less than 24 hours to find ...
OK! Daddy says I'm ready for church!
So you can just imagine what the rest of the house looks like. Check back later if you'd like to find out if I survived the aftermath -- and to hear which of you won the Scentsy Giveaway!
I remember those days of children dressing themselves while Dad looks after them...I also recall coming home one night from work to find that two-year-old Kaylee had "rearranged" my carefully organized and labelled photos in a photo album while her father dozed on the couch!
Welcome home!
Wendy
Hey, I just met you over at SITS so decided to drop by for a visit. Thanks for sharing with us about your Billy, he is adorable. I have a beautiful special needs child who has had symptoms similar to Billy's, she has FAE. With medication and lots of therapy, we get by. I have *so* been in public with the meltdowns and the angry glares - if I see you out and about, I'll catch Billy and give you a big hug. Love ya!
Snippets 'N Stuff
Hahahahaha. Oh my goodness! I want to go to YOUR church :)
Total 3 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 ...”
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 ...
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.
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.
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.
Are these the "captains" that have so terrified Billy? Possibly. |
|
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.
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.
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.
Great list
This is a great list! Looks like a great time :)
I'll remind you that a year can make a HUGE difference, if you promise to remind me, too!
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.
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!
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.
Sounds Like a Great Vacation!
It sounds like you had a great time! I'm so glad. Billy's progress is also fantastic!
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.
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 like your lists!
Especially when they're like this! Loved this post - keep 'em coming!
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
Total 9 comments
Sometimes autism looks like this.
Over a year ago, I was sitting in the lobby of one of Billy's therapies when a well-meaning grandmother of another child remarked about Billy, “He's such a beautiful child. It must make it easier that he doesn't look disabled.”
At the time that she said that, Billy had his nose stuck down into the fake potting soil of the fake house plant in the lobby and was singing something to the plastic tree. I don't know what that looked like to her, but that's what autism looks like in our house.
But I get her point. Those of us with loved ones on the spectrum develop a finely tuned “A-dar,” as we call our ability to identify other kids on the spectrum. But I'll grant you that, especially these days, there are a lot of times when we are out in public when I suppose Billy can “pass” as “normal,” if that's how you want to look at it.
And sometimes, particularly after an exhausting day, it looks a bit like this.
And that used to be important to me. Not so much any more.
Very early on, it would embarrass me when Billy would crawl under the table of the booth at Beef O'Brady's and want to eat his grilled cheese there.
But eventually, I figured out that he likes sitting flush with the glass wall, his cheek pressed against the glass while he watches the lights of the cars in the parking lot. When I finally got down there with him and looked at it from his perspective, I thought, “You know, it is kind of beautiful.”
Also, I've had the opportunity to explain to the wait staff at the restaurant that he is autistic and why he likes to sit down there. At first, they were surprised to find out he's ASD. Then, they sort of shrugged and rolled with it. They always remember his favorite meal, give him a bright smile and never raise an eyebrow when he disappears under the table with his cheese sandwich.
Sometimes it looks like this.
There are times when I wish we had a sign. For instance, when there's a meltdown in a public place, I'd like a sign that reads, “Sensory overload in progress: Please don't touch me or talk to me.” And that would just be the sign that I wore.
In those instances, there are always a few people casting scowling glances, as though the problem is just one of discipline. Those are usually the same people that wish human beings would just spring from the womb already aged 30-ish, so that their dinners/shopping experiences/serenity are never interrupted by the sound of childish squeals.
Some people just stare. Maybe they want to help. Maybe they feel like they should do something. (FYI, if you meet me in the middle of a Billy meltdown, I'd appreciate it if you'd catch him if he runs toward you; otherwise, feel free to go about your day and ignore us completely.)
Autism looks like this less and less these days.
Thankfully, meltdowns are few and far between these days. We go out to eat as a family, take Billy to the grocery store, to Disney World, to the beach. Sure, we hit a few speed bumps along the way, but in most instances, our perspective has changed from “How can we make Billy more 'normal?'” to “How can we support him to succeed in a world that really isn't set up for autistic people?”
Is it easier for us because Billy doesn't exhibit a profound physical sign of his special need, as a child in a wheelchair or with Down's Syndrome does? I don't know. I haven't been the parent of a child with those challenges. I can only guess that there are days when, like me, they think every other parent has it easier. But even on those days, I'll bet when they look at their child, they know that they've never seen anything more beautiful.
What autism looks like is really immaterial. What's more important to me is what Billy sees when he looks at the rest of the world. Because from where I'm sitting, looking at him right now, things are looking pretty good.
What autism looks like
Amen. It doesn't matter what it looks like. Although, I have to admit, because it isn't obvious sometimes it makes it harder, you know?
I agree a MILLION times over. My mom tells me all the time she knows what autism looks like and she works with kids who have autism all the time. She has had one kid with Asperger's in her class a few years ago and that makes her qualified to tell me that our Chris is just spoiled and our Matthew should be spanked for having accidents at 5 years old. Autism looks different for everyone.
It Gets Even Easier
In my experience, being out in public gets easier and easier. Not only because Griffin continues to make progress, but also because, as time goes on, we care less and less what other people think. I mock the stares I get when my 13 year old is melting down because we told he won't be riging on the Macy's elevator today. It's not my fault, or problem, that there are close minded, judgmental people out there. That's their problem.
I agree with The Domestic Goddess about it feeling harder because it's not obvious. Simply because people don't understand as easily, and I've had a lot of well-meaning 'help' over the years.
I often think a public meltdown is like being a soldier in battle (against autism's worst behaviors, not the child), and to have an inexperienced or misguided person try to help is like some random person walking in and trying to offer suggestions - to both sides. On the one hand you have to stay focused on the task at hand, but on the other hand you feel a sense of responsibility to get the civilians to safety!
With a child that 'seems normal' I think more people feel like they know what to do and feel as though they can just jump in and help. Of course, I don't know what it's like to have a child with a visible disability, but I'm sure they have their own unique challenges.
Thanks for the entry - it's a good reminder that life really does give us a little of everything!
A-dar, I love it
I've definitely developed pretty good a-dar. The kid walking on their toes, holding hands and fingers a little outstretched, talking to themselves (of course with Bluetooth cell phone mics I get that wrong more often these days :-)), different speech patterns...it goes on. I think that's why I get surprised when people say my son doesn't look autistic, or more often they just assume he's acting out as opposed to doing what he needs to do to express himself or get by in an overwhelming world.
I used to hate the pictures where he was so obviously autistic - usually when he's so excited that he raises on his toes and throws his hands out and flaps. Now I love those pictures - he's so genuine, the joy just shoots out of the paper at you. Of course, as with everything autism, your experience may vary based on levels and function. I'm not sure it's "easier", but it's real and honest and I love him so.
I adore this post - must follow your blog
This is so profound
"but in most instances, our perspective has changed from “How can we make Billy more 'normal?'” to “How can we support him to succeed in a world that really isn't set up for autistic people?”
Thank you for linking my post - its such an honor
Yes. My son does not 'look' like he has Aspergers. He also does not look like he's only 10 years which adds to people's misunderstanding him. Matt looks like he's 12- 15 years. He's 5'4" and 180 lbs. He's very gifted. But... he only really converses willingly and with animation on subjects of interest, like repairing/ rebuilding/ redesigning bicycles. Otherwise... well, Please don't bother him with inane drivel about other subjects. Although I have to admit he lets me babble on about whatever I am working on and says he likes to listen to me chatter!
Yes, he is absolutely gorgeous. No physical signs of the turmoil within.
Matthew lives in 'Matthewland", obviously an amazing place as he goes there often and returns refreshed and with new ideas for the rebuilding of something (usually bicycles). Sometimes I so wish he'd take me with him!!!
My husband and I have joked about getting our 4 year old a shirt that says something like, "I have autism". Of course we never would... but the judgmental stares used to hurt. I've become immune to the stares during her tantrums. Now I just feel badly for the well meaning people who come up to my cutie to say hi and experience her freak out instead of the expected smile.
Great article! That's how I feel about my boys, too. Sometimes, when I know that we'll be in a stressful situation in public, like going on a plane, I'll put my sons in their Autism Awareness t-shirts, just as a clue to people who might wonder about their behavior or our methods to forestall any meltdowns. BTW, your Billy is adorable!
Regarding Marissa's comments, I am so sorry that your Mom isn't getting it, and very worried about the kids in her class. If those are her views on autism and discipline as a grandparent, I'm concerned about how she treats her students.
You make me think by this post about overcoming obstacles, discrimination, prejudice and beauty. I want to focus on the beauty today. Billy is a beautiful child. Thanks for sharing this Amanda.
What does autism look like?
Beautiful post! You have it so right.
My son has Aspergers. I have often thought that it may be easier if there was a physical sign that showed that he isn't just being bad. There is a reason he is doing what he does. It doesn't help that he is the height (or taller) than friends 12-15yrs old and he just turned 10. People who do not know him, instantly think that he is much older & being a big discipline problem when in reality he is having a somewhat low-key meltdown. I am sure; however, that there may be times when parents of kiddos with Downs think it would be easier to be a parent of an Aspie. No matter the diagnosis, we all need to stick together and advocate for all of our special ones. We are their cheerleaders. :)
Snippets 'N Stuff
I don't think any one thing is "easier". My son is blind and has some very physical abnormities, but when it gets right down to it, his autism is more challenging to me than anything else.
YES!
Oh Amanda!!! This is just perfectly said. I could have written it if I had your talent. I'm going to force everyone I know to read it immediately. Lucky Billy. Lucky you! Thanks, so much!
Things Are Looking Good Indeed!
A friend (who also has a child with HFA) and I once had a discussion. She felt we had challenges to deal with because our kids had to function in the "normie" world while children with more severe autism had it easier because they lived in a segregated world. She brought up the example of soccer. Our kids were able to play in regular leagues while kids with severe autism had to play with other kids like them. While I agree that there are some challenges with helping a child on the high end of the spectrum integrate with "normie" peers, I found it to be a bit offensive as a comparison! I'll take these challenges TYVM and be thankful I don't have to deal with a more "obvious" disability. Not because it's more obvious, but because the challenges are much greater! To me, there really is no comparison!
This is a good reminder to we "Good Samaritans" that maybe we should ask the parents before offering our assistance...
Hugs,
Wendy
Nice conversation, but I have to admit that every time I read something about "high functioning" I cringe. It really is a spectrum and I don't think it makes sense to come up with some arbitrary dividing line. What exactly does high functioning mean? If we're talking about verbal and non-verbal and limited words let’s say that. If we’re talking about kids that are in inclusive education (with or without an aide) or separate classrooms or in a separate school, let’s say that. If we're talking academic achievement or whatever, let's just say it directly.
My son has very limited verbal abilities. He reads and does math very well. He goes to a mainstream school in a regular classroom with a one-on-one aide. He gets some academics in a special education classroom. He receives a lot of support through Maryland's Autism Waiver because he (easily) meets the definition of institutional level of disability (more definition here http://survivingthesystem.blogspot.com/2010/07/autism-waiver.html). I refuse to label him as "low functioning" but I will say he is significantly affected by autism.
I don't want to sound cranky, I just feel like every mention of "high functioning" is exclusionary and pushes our community apart.
I am so enjoying the follow-up comments to this blog! Nice to not be alone out here. Nice to know others have children who are amazing in some areas, but way behind in others. Now as I think of my Matthew who put together my rotary mower (I was 'allowed' to hold the directions!) at seven years old, but at 10 years still has accidents, I have more hope. I always knew he'd be fine~ Matt will someday have the corner office w/ a private bath and a maid to clean that office daily! But the rough road from here to there was looking scary. Thanks for being out there!!!!
PS
The second blog I listed is my Aspie's blog! He loves comments.
Words matter
Thank you all so very much for your wonderful feedback. I love to read your personal experiences about how autism "looks" and how the people you encounter look at autism.
I wanted to chime in on the "high functioning" vs. "low functioning" discussion.
In general, I try to stay out of the debate over labels and word usage. For instance, it doesn't really matter to me whether people call my son an "autistic child" or a "child with autism," but I know that is an important issue to some people in the community.
However, the conversations about "functioning" do bug me.
I was discussing this with my BFF JD recently, and she summed up my opinions perfectly: "When you discuss 'functioning,'" she said, "You're assuming a knowledge of a child or person's potential -- a knowledge you can't possibly have."
And it's true. Both of our sons would be considered "high functioning" if you want to use those kinds of labels. But let's say, for instance, that Billy had received no intervention while he was nonverbal and no one ever taught him how to brush his teeth, put on his clothes, say "Hello."
He might very well have continued to be nonverbal. At the very least, he probably wouldn't be potty trained. And he would have been labeled "low functioning" at this point. People would have assumed things about his potential that were entirely untrue.
There was a point early on when I asked someone, "Will he ever talk?" and I was told, honestly, "There is no way to know."
But he talks. In fact, he talks a blue streak. He learns at an incredible rate.
And yet, there are some things -- things that would be considered much easier than the things he CAN do -- which are next-to-impossible for him.
He can tell you the name of every satellite that has ever orbited every planet in our solar system. But he can't describe his day very well at all.
Does that make the kid who can't name all the satellites "low functioning" in science by comparison?
I've said it before and I'll say it again: Billy is a kid, not a washing machine. His functionality is as unknown, variable and full of potential as any child's.
I know these are just words. But words matter. Imperceptibly at times, the words we choose actually change our thoughts.
So many assumptions have been made about our remarkable children for so many decades. If I could make one wish for Autism Awareness Month, it would be to ask the world to stop making assumptions, and instead, get to know the autistic people all around them.
Chills
I loved when you said "once you saw it in his perspective, it WAS beautiful". I think we all need to remember to do that with our children every now and then. :)
My Awesome Son Austin
I loved your article so much! I remember the eating under the table and the stares that we always got, and I remember wanting so much for other people to just stop judging my baby and see him for the amazing person he is. Austin doesn't hide under tables or chairs anymore and he doesn't have meltdowns like he used to, but he still gets the stares because people see him and they watch him flap or pace back and forth and talk to himself under his breath and think what is with that kid, but I see the most amazing young man, who is self sufficient and confident in who he is and who loves Him! My Austin is 14 years old now and everything you have said about Billy was so true for my Austin, and even though I know we have alot more obstacles to over come, I know and Austin knows that we will face them together. It is so comforting to know that we are not alone in our fight to try and educate society about the wonderful people our children are!
I don't know if I can say what autism looks like for sure, but I do know autism in our house wears the same adorable green PJs. We haven't been in the loop for too long, but I have noticed my A-dar is pretty darn reliable. What's weird to me is when I'm around grown-ups I've known forever and start thinking, "Man they have GOT to be on the spectrum somewhere."
I love it when we find restaurants that are patient and understanding. That definitely makes me want to add Beef's to our list of kid-friendly choices. We recently went to the Hunt Club Subs and Grill. It wasn't crowded, kids ate free (Monday), they had basketball and fooseball games for free and an electric (no heat) fireplace that kept the kids entertained. They were very welcoming. It was great!
Our kids are constantly beautiful but I'm still glad that we are seeing less of the demeanor in the last picture and more of the first! Sounds like Billy is doing awesome! Is it me or is he your doppelganger?
Wonderful, Amanda. I'm sure you spoke for thousands of grateful parents today. Hugs to you, friend.
Wonderful, Amanda. I'm sure you spoke for thousands of grateful parents today. Hugs to you, friend.
Hunt Club Subs and Grill
@Ashley--Just wanted to tell you that the owners of Hunt Club Subs and Grill are our next door neighbors; a nicer, more compassionate and welcoming group of people you could not find in north TLH. We have been to Beef's in Midtown and Killearn and they have always been outstanding in terms of not freaking out when E insists on emptying the sugar packets on the table in order to sort and count them all.
face on the glass
Love the way you capture his heart and the wonder of that moment when you see the world through his eyes (or, rather, through the glass up against which your face is pressed!). It makes the crazy worth it when we "get" our kids. Love how much you do with your little man.
I get the "Oh, he looks so normal!" comment a lot. And now that M is becoming increasingly verbal, I get "oh, he can't be autistic, listen to him talk!" Like you, I don't really care that he can "pass," or whatever you want to call it, partially because it makes it so much more difficult for him, or us, to be taken seriously. All I want is for him to get whatever it is he needs to be able to function and grow.
Total 27 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.
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.
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
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
Billy has a fish named Eric. It's a homicidal maniac that killed its three tank-mates, but that's a Halloween story. Or maybe a Christmas story, since he got the tank and fish for Christmas.
But anyway, this is a heart-warming Valentine's Day tale.
Today, Billy had group therapy. A wonderful program at the FSU Speech and Hearing Clinic, group therapy allows him to get together with two other guys about his same age, and each of them have a grad student speech therapist assigned to them, and together they work on group interactions. They play games together, share snacks, complete projects.
Because Monday is the big V-day, they made Valentine's cards together. Great idea!
And this scene, worthy of a Hallmark movie, unfolds ...
INT. THERAPY WAITING ROOM – AFTERNOON.
Moms wait, purses in lap, staring at the clock as the final minutes of group therapy tick away. (Actually, we just barely made it back from Starbucks around the corner in time to pick up our kids before they locked the building.)
Beautiful Boy #1 – we'll call him CUPID – comes barreling into the room. He spots his mom and hands her his home-made card.
CUPID: I love you, Mom!
All the moms are choked up as she gives him a big hug and they admire his handiwork together. Heck, I want to hug Cupid.
CLOSE ON ME
Expectant grin on my face.
ANGLE ON WAITING ROOM DOOR
As Billy comes barreling in.
CUT TO:
CLOSE ON MY FACE
Expectant grin is wider. It's my turn. MY TURN!
ANGLE ON BILLY
As he drops his home-made card on the floor and heads for the water fountain.
CUT TO:
ME
Grin falters... but then I take a deep breath. It's OK. I've still got the card. I plaster the grin back on my face and reach for the card.
ANGLE ON THE CARD
As I pick it up and see this:
I swear to you I saw that evil fish laughing at me tonight.
LOL! Funny post! Trust me, those of us with a child on the spectrum have been there! But the homicidal fish? That's too funny!
LMAO!! Best. Valentine. EVER! (i'll be giggling about this all day)
Eric - Swoon
Most heartwarming Valentine's Day post so far. Can fish really laugh?
Too funny!
Oh girl, I know that moment! It's such a crazy place we live in - suspended between reality and what we wish to happen. I love how you see the humor in this. Tina Fey's got nothing on you :).
Cute!
Thanks for my morning giggle, Amanda!
Hugs,
Wendy
P.S. Just a heads-up that the text in your sidebar is doing weird things...font just keeps getting bigger and bigger as I scroll down the page...might want to get your personal technical advisor to work on that for you! WM
Oh My Goodness!
Oh Amanda! I feel your pain and I KNOW that had to hurt but ... I am literally laughing out loud! I'm glad you found some humor there! :)
Cute card! Nothin' says love like pipe cleaners.
I do hear the undercurrent of an "ouch," though. Chin up, friend. I'm sure Eric's one hell of a fish, but we all know you're Billy's girl.
(Tina Fey only comes in second.)
Agree with Maura
nobody can take the place of a boy's momma!
So funny!
I've just been catching up, and am laughing hysterically at Eric the fish and the Tina Fey story! So funny! The Disney story, however, is upsetting...even though I don't have a child on the spectrum, that bullying scene should have been stopped. I'm hoping the copious notes the rep on the phone took will actually be used to help Disney's policies!
Whose side are those therapists on?
Really? They couldn't have intervened on that? I'll give them the benefit of the doubt...maybe they thought that Billy's "mommy" was named Eric.
The Valentine's Day card I got from my husband was heartfelt. And the picture that my son Sam drew for me at daycare was sweet. But to be honest, this post is what kept me smiling all day long - and knowing that I wasn't alone. God bless Eric.
Total 11 comments
Sunday July 10 2011 05:22:09 pm
Rebecca C.
Love love love it! Are there reruns of the winter Olympics playing on some obscure channel or what? I love that he even knows what the luge is. Great creative play...by both of you! :)
Sunday July 10 2011 05:27:58 pm
Ashley
That is awesome! I never woulda thought luge, but now that I'm seeing it's really just like a huge marble run with people instead of marbles...I bet some YouTube videos of that could make Caleb's day! Thanks for the idea! =)
Sunday July 10 2011 07:30:38 pm
writerwoman61
I love watching the lugers, even though I think they're crazy to want to do it!
Wendy
That's Awesome!
Monday July 11 2011 02:35:24 am
Cheryl D.
What great imaginative play! You must a proud Mom!
Monday July 11 2011 07:49:24 am
Brenda (mamabegood)
We were just playing sled using a couch cushion down onto an air mattress! Luge would have been so much cooler.
Snippets 'N Stuff
Monday July 11 2011 05:58:41 pm
DeeAnn Lancaster
I can honestly say I have never heard of anyone pretending to luge. :)
Monday July 11 2011 09:58:06 pm
Shannon C
Its so cool to hear he is imagining!! I miss him and willow!
Total 7 comments