Welcome to
those of you joining me from The Disney FAITHful and those of you just hopping
aboard. I am the 2nd stop on
our Magical Blogorail. This month's
topic is Celebrations in Disney.
Choosing a celebration
for this themed post was a piece of cake – birthday cake, that is! Take a look at the countdown on the upper
right-hand corner of the page. As you see, there are only three days until my weekend trip to Walt Disney World! (Can I get a Woot! Woot!?) This trip is ultra-special for me, not only
because it will it be my first-ever SOLO trip to the World, but because it will
be the first time I will visit on our birthday.
That’s
right! I happen to share my birthday –
October 1st – with Walt Disney World, which we all know is
celebrating its 40th birthday this year. What a fun coincidence! Okay, okay, so I admit
I’m a few years older than the Magic
Kingdom, but it’s the same birthday,
nonetheless.
Like most
women my age I’m constantly juggling important demands on my time – kids,
husband, job, housework, errands… yadda-yadda-yadda…the
busy life of the working mother; the stress of special needs parenting – you’ve
heard it all before. But balancing work and play is important for
my mental health. If it weren’t for my
hobbies surrounding Walt Disney World – reading, chatting, blogging, and
tweeting about it – most days would be all work and no play. My Disney time is me-time!
You’ve got to keep your life in
balance!
Earlier in
the year, when the Disney online community started buzzing about the Magic
Kingdom’s 40th birthday coinciding with the inaugural weekend of
Epcot’s International Food & Wine Festival, the wheels in my brain began
turning – very slowly at first – and continued to pick up speed as the months
progressed. So many people I knew from the blogosphere and Twitter were going
to be there, including my new “real life” friend and fellow Spectrum Mom,
Tracy. (See Spectrum Moms Take on theWorld!)
The clincher
came when my favorite podcaster, Lou Mongello from WDW Radio, announced that his show would be broadcasting LIVE from
Walt Disney World for forty hours straight. I knew I had
to be there! Luckily my husband agreed,
reasoning that there couldn’t be a better birthday present for his
Disney-loving wife!
So, as the Birthday Girl, what special treats can
I look forward to at Walt Disney World?
One of the
first things I’ll do after checking into my room the night before is dial “0”
on the phone so I can request the special “birthday message” for my wakeup call
at the start of the big day. I wonder who
will call -- Mickey? Goofy? Cinderella?
I can’t wait to find out!
Photo courtesy oldphoneworks.com
When I
arrive at the Magic Kingdom, my first stop will be Guest Relations, where I will pick up my Happy Birthday button. While wearing this badge of honor, I’ll be
sure to hear “Happy Birthday” wishes from both guests and Cast Members all day
long!
And who
knows what other little surprises may be in store for me? Cast Members have
been known to bestow all kinds of little gifts on the bearers of Birthday
buttons – everything from cards signed by characters to surprise “Happy
Birthday” cupcakes at the end of a meal.
Photo courtesy of DisneyFoodBlog
Stick a
candle in this little beauty and I’m good to go!
Speaking of
cake, I won’t be planning on a custom birthday cake because of traveling solo, but they
are available to order. If you’re
interested, here’s an excellent article from Disney Food Blog on How to Order a Cake at Walt Disney World.
I’ve never
been given a surprise party, but I think
I may be in for one this year! Disney
Parks recently tweeted that “guests at
Magic Kingdom can expect special surprises on Oct 1st” It’skilling me not knowing what these are,
but rumor has it the surprises may involve rare character meet ‘n greets and
perhaps a collectible pin that will
only be available that day.
And while we’re
on the subject of pins, you can be sure that I’ll want to pick up a little birthday
bling to add to my collection!
Of course,
the celebration won’t end on Oct 1st. The party continues the following evening – at
Mickey’s Not So Scary Halloween Party! I’ve got lots of meets lined up, not the
least of which will include spending time with my friend Tracy, another friend
from the DISboards and their kids. Will I be dressing up in costume??
Photo courtesy of villadirect.com
Of course I will! I can’t go to the Halloween
party and not dress up! What will my
costume be?
Well… I’m
saving that for another post!
Thank you
for joining me today. Your next stop on the Magical Blogorail Loop is CapturingMagical Memories.
Here is the
map of our Magical Blogorail should you happen to have to make a stop along the
way and want to re-board:
Welcome to
the second post in this series! I’m marking the ten-year anniversary of my
son’s autism by comparing what I learned in these past ten years to that which is discussed in the classic book, Ten Things Every Child With Autism Wishes
You Knew.
Chapter Two: My Sensory Perceptions
are Disordered
This means that the
ordinary sights, sounds, smells, tastes and touches of every day that you may
not even notice can be downright painful for me. The very environment in which
I have to live often seems hostile. I may appear withdrawn or belligerent to
you but I am really just trying to defend myself.
~ Ellen Notnohm
It was
easily discernable, even at an early age, that certain sounds, smells, touches,
etc., had either the power to set Billy off -- or to shut him down. Haircuts make him scream. The whistling of a
tea kettle sends him running out of the room. Unfamiliar foods make him gag. His
mood and behavior are often unsettled long after the offending sensation has
been removed.
In my
opinion it is imperative that we parents of children on The Spectrum understand
that sensory hypersensitivity will result in “acting out” behavior. It is not, admittedly, the easiest concept to
grasp – or to integrate into our parenting. We are responsible for setting limits and for
disciplining our children. We are charged with teaching our children to follow
rules so they can function in society. Actions have consequences and all children need to learn that.
What I still
struggle with – especially now that my son is an adolescent – is how to tell the
difference between the typical behaviors of a teenager testing limits and those
that are completely beyond his control because of sensory irritation.
It reminds
me of something that Temple Grandin, a well-known author and speaker who has
Asperger Syndrome, has often been quoted as saying: “You can’t punish a child
who is acting out because of sensory overload.
I posed the
question to Billy’s psychiatrist while my 13 year-old son sat there, pretending
to be a dragon breathing fire on me. (He obviously didn’t want to be there.) “Is he doing this as a form of normal teenage
rebellion or is he doing this because of his autism?” I asked. The doctor had no simple answer.
“He’s doing this because he’s a teenager who has autism.”
Um, thanks.
I guess the
best advice I can give to both myself and to you is to:
1) Set
reasonable limits -- without them it will be impossible for a child to navigate
the world. (Don’t expect too much from
your child; but don’t expect too little.)
2) Make
consequences known and follow through with them. (If you keep screaming we will
leave the store – without the thing you are screaming for.)
3) Give
alternative, more acceptable behaviors that will help to diffuse tension. (Don’t
rip the wallpaper off the wall; tear these newspapers instead.)
4) Pick your
battles. (Pretending you’re a fire-breathing
dragon toasting one’s mother like a marshmallow is one thing -- hitting and
biting her is another.)
* * * * * *
In November
Billy and I will be traveling to Walt Disney World without my husband and
daughter, so as a result I’ll be solo-parenting Billy for the week. Parenting a
child who has ASD is a challenging enough role for two parents let alone one –
and it will be even more so for me because we’ll be in a highly stimulating
environment. Let’s face it; a day in a
theme park can be over-stimulating for anyone.
I anticipate that there will be many times I will miss having my steadfast husband there
to share the parenting duties.
One of the
interventions I’m planning in the event that Billy becomes overwhelmed and
begins acting out is the use of Social Stories.
Carol Gray
first defined Social Stories early in 1991.
A Social Story is a
short story – defined by specific characteristics – that describes a situation,
concept, or social skill using a format that is meaningful for people with ASD.
(*Visual as opposed
to verbal.) Social Stories are often
written in response to a troubling situation, in an effort to provide a person
with ASD with the social information he may be lacking. The result is often… an
improvement in the response of the person with ASD.
We used
Social Stories a lot more when Billy was younger and less verbal. In
fact, back in 2006 I submitted a tip involving the use of Social Stories and
kids with ASD and it ended up being included in the book PassPorter’s Open Mouse for Walt Disney World and the Disney Cruise
Lineby Deb Wills and Debra Martin Koma.
Currently I’m
working with Billy’s behaviorist to develop these social stories. (The school
he attends uses a program called Board Maker, which I don't have.) I will be sure to post them here. In the
meantime, my good friend Amy, who has two boys on the spectrum, has
graciously agreed to share pictures of just a few of the social story cards she made
for her upcoming Disney trip:
As you may or may not know, I have a regular column on a Disney fan site, WDW Fan Zone, entitled Faces in the Queue. Typically I do interviews with Disney fans who have special needs or challenges.
This month I was all set to write my usual blog when I realized it was scheduled to be published on 9/11/11, the ten-year anniversary of the terrorist attacks on our country that claimed the lives of thousands. I began thinking about Fear -- how in many ways Fear could be considered an invisible disability, one that could seriously affect a person's quality of life.
I decided to interview someone who had overcome Fear and opted not to cancel her post-9/11 trip to Walt Disney World, despite pleas from family and friends to do so. That person is my sister, Eileen, and you can read the rest of her story HERE.
Hello, and welcome to Something About Me Saturday!
Something you may not know about me is that I've recently been a guest or guest host on several Disney Podcasts. A podcast is a digital or audio recording, usually part of a themed series, that can be downloaded from a Web site to a media player or computer. Disney podcasts are excellent sources of news, information, and entertainment for us Disney fans!
I'm most excited to tell you about my participation in a podcast series at The Best Magic entitled Autism & Walt Disney World: A Match Made in Heaven. Here I've been given the opportunity to chat with Webmaster Sal Tracanna and fellow guest Tricia Ballad (from Return to Disney) about my two favorite subjects: Walt Disney World and kids with Autism!
Because of the overwhelming response to the series, Sal has graciously invited Tricia and me to guest host a regular roundtable discussion series on Special Needs Kids and Walt Disney World. I'm hoping we can reach a wide audience and foster increased awareness and acceptance of people living with disabilities who love to visit Disney Parks just like we do!
If you'd like to listen to the shows we've recorded so far, kindly click on the following links. Enjoy!
I am first and foremost
a child. I have autism. I am not primarily “autistic.”
~ Ellen Notbohm (2005)
I have a
huge confession to make. When the pediatric neurologist changed Billy’s
diagnosis from the inherently vague PDD-NOS
(Pervasive Developmental Disorder-Not Otherwise Specified) to Autistic Disorder, I was secretly
relieved. For two years I had struggled trying to explain to family, and at
times complete strangers, the reason for Billy’s baffling behavior and lack of
language skills. Saying “My son has a pervasive developmental disorder” usually
resulted in blank stares and a flurry of questions I couldn’t answer; questions
that were salt on an open wound. “My son
is autistic” usually shut them up quick. Having that label made things a little
easier…for me.
For years I
used that term as a descriptive. “My son is autistic” meant no more to me than
“my son is tall.” Remember, too, that
I’m a Registered Nurse. We nurses are trained to treat patients in a holistic
way and I like to think that most of us do, yet we still use a diagnosis in a non-offensive
descriptive way. It is what it is. He’s diabetic. She’s asthmatic.
It imparts important information and clarifies
the patient’s special needs. Why would I not describe my son that way when the
situation called for it?
September,
2003: Our first visit to Walt Disney World.
Billy was 5 years old and, predictably,
was terrified of the characters. Even Tigger, who he adored on page and screen,
was too much for him sensory-wise when he bounced over to our table. “My son is
autistic,” I told the character handler. She whispered something to Tigger and
he immediately stretched out on the floor and held out his paw. Tentatively,
Billy reached over and held it from a safe distance.
"Cheeeese!"
Those four
little words -- my son is autistic -- completely changed
the experience for my son and in time I became quite comfortable using them to
communicate that Billy had some special needs, especially when in an
environment such as WDW.
Earlier this
year I received a Facebook message from a friend whose son has high-functioning
autism, or Asperger Syndrome. My friend suggested that I adopt the practice
of using “child first, with autism” instead of “autistic” when referring to
kids with Autism Spectrum Disorders. In
her book, Ten Things Every Child with
Autism Wishes You Knew, Ms. Notbohm, advocates the same:
My autism is only one aspect of my total character. It
does not define me as a person. Are you a person with thoughts, feelings, and
many talents, or are you individualized by one trait? Are you fat (overweight),
myopic (wear glasses), or klutzy (uncoordinated, not good at sports)? Those may
be the things that I see first when I meet you, but they are not necessarily
what you are all about.
As an adult, you have some control over how you define
yourself. If you want to single out a single characteristic, you can make that
known. As a child, I am still unfolding. Neither you nor I yet know what I may
be capable of. Defining me by one characteristic runs the danger of setting up
an expectation that is too low. And if I get the sense that you don’t think I
“can do it,” my natural response will be: Why try?
First off, I
think the author (herself a mother of a child with ASD) makes some good
points…the most obvious being the old adage “you can’t judge a book by its
cover.” I also believe, whether you apply it to parenting or supervising others
in the workplace, that if you set your expectations high, most people will rise
to meet them.
I suppose I
run into difficulty when it comes to the part when she says defining
me by one characteristic runs the danger of setting up an expectation that is
too low. Perhaps it’s
because I’ve never considered my son’s autism to be just another one of the
“characteristics” of his personality. I
have accepted his autism for what it is: a lifelong developmental disability.
His progress in school or social situations is not determined by whether I say
“autistic” or “with autism,” it’s a function of what he can or cannot perform
neurologically. (Again, this is the nurse talking.)
I’m going to
go way, way out on a limb here. I’m going to go so far out that I run the risk
of offending some readers. If I do, then I apologize.
But here’s
how I see it:
As most of
you know autism is a spectrum disorder,
meaning that there is a huge range of differences in both the number and
severity of challenges in the areas of language, behavior, and sensory
integration that each person with ASD can exhibit. When it comes to severity, people on the spectrum are
generally considered:
MILD >>>>MODERATE
>>>>SEVERE
Billy falls somewhere between moderate and severe "classic" autism. He
attends a school that specializes in teaching kids with developmental and
behavioral disabilities. In some areas his challenges/deficits are profound.
His language is minimal. He does not
know that he has autism and has never given any indication that he is cognizant
of being “different” from his neuro-typical peers.
Over the
years I have come to accept that he will never live independently, not because
he was given the label of autism, but because he is functionally
incapable of doing so. Again, it is what
it is…and we’re working with it.
I’ve jumped
ahead a little in the book and in doing so I’ve learned that the author’s son is
most definitely not moderate-to-severe:
Bryce, who at thirteen has succeeded
at social interaction in settings ranging from team sports to school dances, is
a grand example of what a child with autism can achieve when a healthy
self-esteem leads the way… He has the jaw-dropping – for any kid – ability to
deflect teasing and cruelty with the perspective that the insulter “needs to
work on his manners” or “has some growing up to do.”
Last year
Billy had some trouble with a boy on his bus that would not stop making faces
at him. “Stop it, Daniel, stop it!” was the extent of his reaction. If Billy
ever verbalized that the other boy on the bus “had some growing up to do,” I believe
I would fall off my chair!
Okay, I’m
taking a deep breath now because here comes the part that some of you may not
like: I believe that the parents who most fear the negative connotations of the
“autistic label” are usually the ones whose children are on the high-functioning end of the autism
spectrum.
I’m going to
put this bluntly: I know that my child’s language and behavior are so obviously atypical that his “invisible”
disability is no longer invisible. It doesn’t matter if I introduce Billy as
“my autistic son” or “my son who has autism.” Anyone who spends ten seconds in
the presence of my thirteen year-old can see and hear for themselves that he is
not neuro-typical (read: normal.)
In many ways
I have it much easier than do parents of more highly-functioning children. I
don’t have to deal with the anxieties of mainstreaming my child. There are five
children in my son’s class, all with multiple … oh, shall we say… issues. None
of them think of him as “the weirdo kid” in class because they’re all weird (read: special).
Mrs. Bear:
They’re weirdos, Fozzie!
Fozzie Bear:
Yeah…
Mrs. Bear:
But, they’re nice weirdos.
Fozzie Bear:
Yeah!
I daresay
that the one special-ed teacher and three teacher aides assigned to my son’s
class will expect each child to work toward his or her full potential, no
matter what that child’s diagnosis/label/classification may be.
That said,
if you scan through previous posts you will notice that some time ago I did adopt
the child-first language so as not to alienate other parents. If it matters to them, I respect
that. But for me -- after ten years riding The Spectrum -- it’s all six of one,
half dozen of another.
Autism: it
is what it is.
*In 2013, the
American Psychiatric Association's new Diagnostic and Statistical Manual of
Mental Disorders (DSM-5) will be released. The diagnoses of PDD-NOS and
Asperger Syndrome will no longer be used.
New diagnoses such as Social Communication Disorder will be added.
It's been
ten years since my son Billy (13) was diagnosed with Autism and it's been quite
a ride.Just like Rock ‘n Roller Coaster
at Disney’s Hollywood Studios, the ride began by hurtling me into the darkness
and at first I kept my eyes shut and just prayed for it to be over. (It took
several years before I could relax and enjoy the ride.) The Spectrum’s had just
as many unexpected curves, inversions, and sudden drops. It’s made me laugh and scream at the same time
and has made my eyes water far too many times than I care to admit.
I'm not one
to throw my arms up on thrill rides; I keep a white-knuckled grip on the safety
bar at all times. While riding The Spectrum I’ve hung onto whatever knowledge
and insight I could gather -- from my son’s teachers and therapists, from
books, and most importantly from other parents -- to counteract the feeling
that I was going to fly out of my seat at any minute!
Now, you
might think that after ten years I would be somewhat of an expert on Autism.
Well, that's far from true! I'm always learning and growing as a parent, just
as my children are always learning and growing with each passing year. And so, I’ve
decided to pick a book that was written for parents new to this wild ride (Ten Things Every Child With Autism Wishes
You Knew.) I plan to read it and see how many of these lessons I’ve mastered -- and how many I may have forgotten.
So come join
me, starting tomorrow, for my weekly look at Ten Things I’ve Learned While
Riding The Spectrum. Until then, here’s a little something to get you in
the mood!
The Many Adventures of a Disney-Lovin’ Spectrum Mom is not affiliated with, authorized or endorsed by, or in any way officially connected with, The Walt Disney Company or Disney Enterprises, Inc., or any of their affiliates. All trademarks, service marks, and trade names are proprietary to Disney Enterprises, Inc., its subsidiary, affiliated and related companies, as the case may be. For the official Disney website, visit disneyparks.disney.go.com
