Bah Humbug: Santa Denies Meeting Local Girl with Autism, Blames Service Dog

“I can’t believe Tommy got an iPad to use at school, for free! That family is so entitled. I don’t care that he uses it to talk; that’s just an excuse. My son should get one too!”

“Jesse’s family is so lucky! They have that handicap parking placard and can park anywhere they want to! They don’t have to search forever to find a spot like we do.”

“I’m so happy that Disneyland finally taught parents with disabled kids a lesson and got rid of those stupid front of the line passes. I’m so sick and tired of these people getting what they want, whenever they want it. If they don’t like it, they should just build their own park and go there.

Those ret@#ds always get everything they want while the rest of us have to earn it.”

These comments are all too familiar for families with special needs loved ones. Backlash such as this is unfortunately commonplace, and the latest example has come on the heels of  a story about a local girl with autism who was denied the opportunity to meet Santa at The Shops in Mission Viejo over the weekend.  Abcde Santos, age 7, waited in line for 30 minutes on Sunday with her service animal, a pitbull named Pup-Cake. According to family friend Julie Miller, Santa – upon seeing the breed of the service dog – refused to allow the child near him. Abcde’s parents informed staff repeatedly that the animal was a trained and licensed service dog, but apparently Santa wasn’t feeling very holly jolly that day and the little girl was denied a visit.

santa edit

I just wonder what must have been swirling in this little girl’s heart as she realized she would not get to greet the great St. Nick after all. Few things crush the spirit of a child as brutally as being denied the opportunity to meet Santa by Santa himself.

Predictably, social media ensured the story spread like wildfire, and in no time, the asinine comments filled my newsfeed:

“Some people are so spoiled. This family needs to get over themselves.”

“Who do they think they are, bringing a pit bull into the mall?”

“If it were me, I’d just leave and come back another time. Clearly they think they are better than everybody else.”

Logic, objectivity, empathy, compassion and educated opinions are no match for irrational envy, misinformation and ignorance.

Many of us raising children with special needs have been on the receiving end of such flagrant judgment and disrespect; even if nothing is said outright, the looks and stares and eye rolls stay with us long after we’ve returned home and tried in vain to excuse the ugliness and replace it with dejected acceptance that this is just the way things are.

Usually, these comments and assumptions occur within our immediate community: our child’s school, place of worship, local businesses and attractions. We stifle the urge to unravel in public and wonder if it will always be this way; if there will ever come a day when we won’t feel it necessary to justify and explain every accommodation our child may receive.; a day when the jackasses of this world will somehow finally get it and shut the bleep up.

Over and over again, stories in the media about individuals with special needs being denied proper access or appropriate accommodations – the kind that are clear violations of the Americans with Disabilities Act and The Individuals with Disabilities Education Act  – are punctuated with accusations that entitled and spoiled rotten parents are once again throwing tantrums to get their way.

Let me tell you something. Our wish list regarding the treatment of our loved ones with special needs is short:

1. Presume competence.

2. Treat them with respect.

3. Provide them with the means to successfully and safely navigate society.

4. Move over a little and quit hogging all the space. There’s plenty of room for all of us.

There is nothing entitled about wanting your child to thrive; to experience life on terms that address and support their specific impairments and challenges. The things we ask of society, the accommodations afforded through federal laws and regulations, are what most everyone else in this country take for granted on a daily basis.

Service animals aren’t just glorified pets. They provide protection, safety, evidence-based therapeutic benefits, and accessibility to surroundings and environments that may otherwise be out of reach for those they serve. They are, in a word, a lifeline.

This particular situation with Abcde and Pup-Cake highlights the need for more education and training regarding the rights of individuals who use service animals. It also highlights the fact that the internet brings out the very worst in humanity and people will literally say anything behind the comfort of their computer screens. If ignorance was harnessed as the new energy source we’d never have to worry about a power shortage.

I will tell you this. There’s no joy in bringing this kind of discrimination to light; families who choose to voice their experiences often become the targets of malicious assumptions and mud-slinging, yet they do it anyway, knowing it may spare those who come after them the same heartbreak and ridicule.  Did you know this wasn’t the first time the Santos family has encountered discrimination due to their daughter’s service animal?  In 2013, Mrs. Santos and Abcde were asked to leave Tom’s Farms by an assistant manager, despite Pup-cake wearing his service vest and Mrs. Santos providing paperwork indicating the animal was a service dog. Since the Santos family made their experience public, Tom’s Farms has committed to updating their policies and training their employees properly regarding the rights of individuals who use service animals. Very often change begins the hard way. It shouldn’t have to, but it does.

By the way, how old do you think it gets being told to leave establishments everyone else can access without restriction? How many ways are there to tell your child with special needs that her accommodation – the one that allows her to connect with the world in a safe and meaningful way - is unwelcome? How many times does society have to keep getting it wrong before we finally start getting it right? And more importantly, how many people calling the Santos family entitled and spoiled are the same jackholes who bully their way through the school pick up line every day because the only child that matters is theirs?

Entitled? Spoiled rotten?

Hardly.

More like devoted and dedicated advocates who aren’t afraid to tell anyone - even Santa – that the special needs community matters, that the rights of individuals with disabilities matter, and that accessibility isn’t just a suggestion, it’s the law.

 

I Spoke to Neel Kashkari about Seclusion and Restraint

*Disclaimer: This post is not an endorsement of Neel Kashkari, nor is it a post denouncing him.*

It’s time to vote for a California governor again and the candidates, Jerry Brown and Neel Kashkari, have a lot of opinions on a lot of issues. As a parent of a child with special needs, I have some opinions of my own, and I recently got the opportunity to meet with Neel Kashkari and talk to him about ending restraint and seclusion in California, as well as the importance of educators and administrators presuming competence in our students with special needs.

Did you know that 1 in 10 students in California receive some form of special education? That’s a lot of students that need strong advocates making sure they’re not only safe, but educated in a free and appropriate environment.

From Kara-Noel Lawson, Neel Kashkari, Jo Ashline, Julie Collier

From Kara-Noel Lawson, Neel Kashkari, Jo Ashline, Julie Collier


The coffee and cupcake meeting we had was a great starting off point for me, as I don’t have a lot of personal experience with politicans (but watch out Sacramento, I’m coming for you!). Neel was a total gentleman and it was a pleasure speaking with him for the hour or so we sat together, but truth be told, he knew virtually nothing about the plight of parents raising children with special needs, nor did he seem knowledgeable regarding special education law in our beautiful state. Which just meant I had a lot of educating to do on the issues that matter to our families the most!!

Below is a short, 5 minute video showing a portion of our conversation. My goal in all of this? To get in front of anyone who will listen and tell them that restraint and seclusion in schools needs to be outlawed, and that our children DESERVE BETTER. So Democrat, Republican, Libertarian…I don’t care who they are or the political party they are affiliated with. Line them up so I can tell them exactly what I think.

iPad Giveaway for Local Non-verbal Child, Thanks to Generous Donation by Reader

Last Friday I opened my Facebook page – as I do on way too many occasions throughout the day – and noticed I had a private message from a reader:

“Jo, I enjoy your writing about the special needs community. You are able to uniquely show a compassionate and caring viewpoint to those with special needs. It is my understanding that iPad minis are a great help to those on the autism spectrum. I would like to donate 1 iPad mini to a local family that would put it to good use. ” – R.O.

By this point my eyes were blurry from the tears. What a kind and generous gesture! The only requests he made were that his identity remain anonymous, and that the iPad go to a local child. Since we live in the same city, we agreed to meet in front of our local Target (I brought my husband along). We walked up and he was already there, waiting for us. He handed me the iPad mini, a case, and a receipt (“I didn’t want you to think I was passing along stolen merchandise,” he told me), and I was overcome with emotion. But it was what he said next that really touched my heart.

His mother had passed away the previous month at the age of 88. She was an avid reader of The Orange County Register, a publication I have been freelancing for for several years now. He told me that his mother loved my work so much that she would cut out my articles and pass them along to him. I know that my articles get shared via Facebook, email, and Twitter, and I’m always grateful for the exposure,  but something about an elderly woman taking the time to cut out my work because she deemed it valuable enough to pass along to others humbled me beyond words.

Through tears, I promised to give the iPad to a local special needs child who would greatly benefit from it. I explained to him that for my son Andrew, the iPad has truly been a miracle on so many levels. We hugged and parted ways, and my husband and I walked back to our car speechless as the generosity of this stranger (though he no longer felt like a stranger after our encounter).

We talked the entire way home about how wonderful it was that we would be able to gift the iPad to someone who could really use it, and that’s when we realized that so many children are in need of this amazing technology. How would we ever choose?

My husband came up with an idea to host an essay contest and after giving it some thought, we truly believe this is the fairest way to approach this situation. So, if you’re a local family, whose special needs child is non-verbal and does not already have an AAC device, this giveaway is for you!

To Enter:

Submit a 250 word essay on how the iPad mini would benefit your non-verbal child and how you plan to use it to support and facilitate their needs. Email your submission to specialneedsoc@gmail.com no later than Monday, December 23rd. Winner will be chosen by me and announced Tuesday, December 24th. Since this is going to a local Orange County child, arrangements may be made to pick the iPad up on the 24th, so that you can have it in time for Christmas.

Winner will receive:

One (1) iPad Mini

One (1) iPad Mini case

All I ask in return is that you find some small way to pass along a random act of kindness. I don’t expect you to buy an iPad for someone, but often the smallest gestures go the longest way. I am so moved by this man’s generosity, and I promised him that my husband and I would find a way to pay it forward.

On a side note, I so wish I had enough iPads to go around. If there’s one thing I know, it’s that everyone deserves a voice, no matter what form that voice comes in. The world has opened up in amazing ways for my own non-verbal son ever since he got an iPad, and it’s my dream to give other children the same opportunity to develop language and learn in ways that makes sense to them.

Thanks to the incredible generosity of one man, I’m honored to give at least one child a chance at a miracle.

 

andrew with ipad modern day miracle

 

 

Caring Santa for Special Needs Families Comes to Orange County – and Across the Nation

Once again Simon Property Group  is partnering with AbilityPath.org to provide special needs families the ability to visit and take a photo with Santa in a sensory and user-friendly environment on Sunday, December 8th.

From the CaringSanta.com website:

Caring Santa is an opportunity for children with special needs and their families to enjoy a photo session with Santa. Extra care has been taken to support the sensory, physical and other developmental needs of children so they can enjoy this wonderful holiday tradition. The program is owned by Simon Property Group, and is implemented with input from AbilityPath.org.

Caring Santa is Coming to Simon Malls across America on December 8th. Photo Courtesy Simon Malls

Caring Santa is Coming to Simon Malls across America on December 8th. Photo Courtesy Simon Malls

To check if a Caring Santa is coming to a Simon Mall location near you, visit the Caring Santa website.

For Orange County locals, Caring Santa will be located at the Westminster Mall, beginning at 8:30 am, at the entrance between Macy’s and Target.

To ensure your loved one with special needs will be able to visit with Santa, make sure to RSVP.

You can read about the positive impact the Caring Santa program had on local Orange County special needs families last year in an article written for The Orange County Register.

 

Orange County Details:

Caring Santa @ the Westminster Mall

1025 Westminster Mall, Westminster, CA 92683-4943

Sunday, December 8th, 8:30-11:00 a.m.

To RSVP, visit Caringsanta.com

 

 

 

 

 

 

 

 

Holiday Tips for Autism Families from Author Monica Holloway And Signed Book Giveaway!

The holiday season is upon us and that means one thing: It’s time to hide under the covers until it’s safe to come out again! Wait, that’s not right. Everyone deserves to enjoy this time of year, but if you’re an autism family, the holidays pose many challenges. Sensory overload, dietary restrictions, and unpredictable and overflowing schedules can all contribute to a stressful season for individuals with autism. Amazing parents, friends, and family members like you are determined to make the holidays a magical and safe time for your loved one on the spectrum, but if you’re anything like me, you often find yourself coming up short on ways you can ensure your loved one’s specific and unique needs are being met.

Monica Holloway, author of the bestselling memoir Cowboy and Wills - about her son with autism and the golden retriever who changed his life-  has created a list of tips to help you stay on track and make the holidays more successful for the entire family:

·      Use visuals. Social stories or calendars can help your child prepare for and understand the activities ahead.

·      Practice. Role-playing holiday routines can help your child to prepare for holiday traditions in advance.

·      Gradually decorate. If your child doesn’t like change, slowly decorate your home in stages.

·      Create a photo album of holiday guests. Prior to relatives and guests visiting, make and look through a photo album with your child to familiarize him or her with expected    visitors.

·      Ensure allergy/diet-friendly foods are available. If your loved one has a dietary or allergy restriction, make sure to bring or have food at holiday events that he or she can eat.

·      Arrive early. Allowing the noise and crowd to gradually build up may help your child better acclimate to the surroundings.

·      Have a quiet room. In case the noise or crowds become overwhelming, have a calm, quiet place for your loved one to retreat to.

·      Help others understand autism. Prepare family and friends on your child’s strengths and challenges, and invite them to be a part of the support team.

Visuals are imperative for my son Andrew, who relies on social stories that I create using Pictello, a wonderful app by AssisitveWare. I also love Monica’s suggestion for a quiet room. We always make sure to have somewhere for Andrew to go where he feels safe and has a chance to decompress from the noise and crowds. And of course, using the holidays as an opportunity to educate extended family members and friends is a wonderful way to spread awareness and encourage everyone to be part of your loved one’s successful holiday season!

Alright, now that we’ve covered the tips, let’s get down to the giveaway! ONE winner will receive a signed copy of Cowboy and Wills by Monica Holloway! Save if for yourself or gift if to that special autism parent in your life!

Cowboy&Wills_Large_paperbackcover 3

 

To Enter:

Leave a comment on this post letting me know the biggest challenge your loved one with autism faces during the holiday season. (1 entry)

Additional Entries:

Like Special Needs Orange County on Facebook and leave a comment on this post telling me you’ve done so (1 additional entry)

Share this giveaway on Facebook. Leave a comment on this post telling me  you’ve done so.  (1 additional entry)

Share this giveaway on Twitter. Leave a comment on this post telling me you’ve done so. Include a link of your post. (1 additional entry)

Giveaway ends on Wednesday, November 27th at 6:00 p.m. Winner will be contacted via email and announced on our Facebook Fan Page. Good Luck!

Why I Won’t Be at the Autism Speaks Walk this Saturday

Her words still haunt me to this day:

“He was my favorite student. I worked so hard on him all year. By the time he left my class, you couldn’t even tell….”

She was a special education teacher at a local school.

He was her student. He also had autism.  And what she meant when she said “you couldn’t even tell….” was that you couldn’t even tell he had autism.And what she meant when she said he was her favorite, was that he left her class having been “fixed” by her.

But in order to “fix” someone, you first have to believe he was broken to begin with.

I don’t know about you, but that kind of perspective about people with autism scares the hell out of me.

My son has autism.

But my son is not broken.

My son faces many challenges in his life.

But my son is not a tragedy.

My son deserves compassion and respect, and access to reasonable supports and resources.

But my son does not deserve to be considered a national emergency.

And yet, Autism Speaks, an organization which claims to speak on his behalf (they don’t), continues to portray him and others who share the autism diagnosis as a crisis. Co-founder Suzanne Wright wrote a post this week that sent chills down my spine. She claims families like mine aren’t living. That our country isn’t ready for the impending disaster because we haven’t built a city to contain the 500,000 kids with autism that will be adults in the next decade. She wants you to picture my son and others like him and she wants you to be very, very afraid:

“Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.”

Is raising my child with autism difficult? Yes. Yes it is.

Is it also beautiful and humbling and incredible and joyous and fulfilling in ways I never ever thought possible?

You bet your sweet ass.

I’m so tired of the fear-mongering. It does nothing to serve our community. It only undermines the efforts of those of us who want to teach the world to look at our children as the valuable human beings they are.

Have you ever gone somewhere in public and had your child looked upon with pity? Or disgust? Or anger? Or judgement?

I have.

Trust me when I tell you witnessing tangible contempt from a stranger for the very person you would give your life for pains you to your very bones.

So when an organization such as Autism Speaks takes to screaming from the mountain tops that the world is in imminent danger because autism is here, I think of all the people that have ever looked at my son with disdain and fear and intolerance, and I multiply them by millions and millions and I wonder if I’ll ever feel comfortable and safe leaving the house with my autistic son again.

Does it frighten anyone else that the teacher’s pet ends up being the kid that has ceased to flap and learned to script obediently and politely?

Well, it should.

Because the message behind that sentiment is a very scary one: you are only as valuable as you are repairable.

Sure, my kid needs help. He needs therapy and good insurance and teachers that see him as the whole human being he is and not some fragmented puzzle to forcefully piece back together until it fits some predetermined, prehistoric social norms.

It’s perfectly possible to present the realities of autism without undermining the respect of the individuals who are diagnosed with it. Autism is a spectrum. Not everyone requires or needs the same level of supports and not everyone is impacted cognitively, physically, or medically in the same way. Regardless of the unique needs of autistic individuals, there is one thing they all share: A basic fundamental right to coexist safely in a society that respects and values them rather then perceives them as being broken and dangerous.

And that lack of humanity on the part of Autism Speaks is why I nor my site – Special Needs Orange County – will  be participating in the Autism Speaks Walk this Saturday in Orange County, California.

Our logo will still be on the shirts and the posters and the flyers; those were printed well in advance of Suzanne Wright’s post and it’s too late to do anything about that.

But our booth will stand empty, and I needed you to know why.

So if you were planning on stopping by to introduce yourself and say hi, or you’re a new parent who just started out on this journey, here’s what I would have said to you this weekend:

“Your child with autism is beautiful. Your child is not scary. Or a tragedy. Your child is not a mistake. Your child does not need to live in a segregated city and your child is worthy of love and respect and appropriate supports without being made to sound like a crisis. Most importantly, your child deserves to be the teacher’s pet not because he doesn’t flap, but because when he does, his face lights up in a way that steals her heart.”

 

Hey Suzanne Wright and Autism Speaks: This is my son Andrew. He has autism and he makes my life worth living.

Hey Suzanne Wright and Autism Speaks: This is my son Andrew. He has autism and he makes my life worth living.

Epilepsy Support Group Comes to Orange County

At first, my husband and I thought our son Andrew – two at the time – was merely falling asleep in his highchair during meals. We marveled at how adorable he looked as his eyes fluttered and we giggled when his head fell forward.

The laughs ended abruptly one week later, when our son collapsed in our front yard, his body giving out beneath him, his muscles rendered useless as we rushed to his aid.

The diagnosis came quickly: Epilepsy. Atonic seizures and Absence seizures to be specific.

My husband and I were still reeling from our son’s autism diagnosis, which we had received just two weeks prior. Needless to say, we were overwhelmed and scared to death, knowing we had an entirely new world to navigate.

Medications were administered, and we finally began finding the combination that worked the best, allowing Andrew to once again play at our local parks and be active, though the “what if’s” were beginning to pile on, threatening to scare us back into the safe cocoon of our home.

Diagnoses such as autism and epilepsy can be incredibly isolating for families. Luckily, the autism support community continues to grow and a wide range of resources are available to parents, children and adults on the spectrum. In Orange County alone, families can turn to TACA Center for Autism at CSUF, Autism Speaks,  Autism Society, and The Center for Autism  just to name a few. But families facing an epilepsy diagnoses, or a dual diagnosis of epilepsy and autism continue to struggle to find resources geared toward parenting their medically fragile child.

After the passing of Jill Cabanillas, founder of Epilepsy Alliance OC, last March, a void was left in Orange County as Epilepsy Alliance merged with a larger group in Los Angeles. Simran Mangat-Garcia, whose son Akshay has both autism and epilepsy, knows all too well the level of support that’s needed for families like hers living in the Orange County area:

“There is a great need as autism and epilepsy dual diagnosis is over 40%. Seizures are linked with increased mortality and morbidity in individuals with ASD and the leading cause of mortality in adults in ASD. While only 1-2% of children in the general population will develop epilepsy, we also know that seizure disorder can affect speech, fine and gross motor function.”

Wanting to find a way to help fulfill the need for more support and resources for patients and families facing a dual diagnosis of autism and seizures, Mangat-Garcia has teamed up with Kelly Gotus, Neurologist Dr. Stein, Brad Levy of FullSpectrum EEG and the local Orange County chapter of TACA to form E2, a new and comprehensive support group that Magnat-Garcia hopes will target all areas of needs for this unique community:

“We will be providing educational meetings and support.  Dr.Stein and Brad Levy will be our advisory panel and Kelly Gottus and I will be coordinating meetings and the group. Our first meeting is Epilepsy 101 and Autism.  Personally for me the autism and epilepsy journey has been a difficult one.  When you have a kiddo who can’t verbalize that he had a seizure or how he feels post seizure, it’s tough. Seizures are what first affected Akshay before we had an autism diagnosis.  It’s my research into seizures that led me to suspecting that Akshay had autism.  TACA has always been a great resource and support and it’s great that we can join with them to form E2.”

E2 will be holding its first meeting this Tuesday, November 12th, at 6:30 p.m. at TACA’s National Office, located at 2222 Martin Street, Suite 140
Irvine, CA 92612. The evening’s speaker will be Dr. Stein, whose Pediatric Neurology practice is located in Irvine.
For additional information, please contact Simran Garcia at Simran.Garcia@tacanow.org.
e2 logo 1

 

6 Places I’ll Be Taking My Special Needs Kid Instead of Disneyland

Okay Disney.

My family hears you loud and clear.

We know when we’re not wanted.

Actions speak louder than words and right now, your actions are clearly telling us to GO AWAY and STAY AWAY.

So away we go!

Below, a list of places I’ll happily take my special needs son and the rest of my family, instead of to any one of your parks (that is, until  Mickey gets his head out of his butt and realizes what an @## he’s being):

1. Escalators: They’re everywhere! And you don’t need a Guest Assistance Card to get on one! There are rarely any lines and my son Andrew loves them. Maybe not as much as he loves going on Big Thunder Mountain with his daddy, but we’ll make it work.

2. Elevators: At the mall. At the hospital. At the fancy hotels near our home or the parking structures by the local courthouse. It doesn’t matter where they are as long as they’re going up and down, over and over and over again.

3. Irvine Park Railroad in Orange, Ca.: The staff is amazing and guess what? Yep! No GAC necessary here either! Last week Andrew wanted to ride one of their John Deere tractor cars they put out for their pumpkin patch season, but he couldn’t operate it on his own. So the two guys running the attraction made it their mission to keep him safe and accommodate him in a way that made sense for his particular needs, instead of forcing him to use an asinine policy that would leave him overlooked and frustrated. Imagine that.

4. The Beach: The ocean may have nothing on Radiator Springs at Disney California Adventure, but for our kid, it’s a close second and last I checked, enjoying the ocean didn’t require checking into a kiosk to obtain a return time on a card while we try to keep our overstimulated and disappointed kid calm and comfortable long enough to watch a few waves. We can enjoy the same view all damn day if we want to while our kid flaps his arms to his heart’s content. Nature for the win!

5. Our neighborhood streets every Monday: It’s Trash Day and that means garbage and recycling trucks are coming through! I know it’s not as glamorous as a Disney parade, but there’s something about watching ginormous trash bins getting lifted into the air that makes Andrew truly happy, which is definitely NOT what he would be if he were at one of your parks right now. Plus, you totally get used to the smell. Sort of.

6. Truck Stops: Sure, they’re creepy and no place for children, but it’s where all the big rigs are and if you know anything about special needs parents, it’s that we’re determined to put a smile on our children’s faces! Which means this mama will soon be hanging out with guys who go by names like Overflow and Thunder and gals who embrace their facial hair. But no matter. We will make do. We’ll just make sure to leave before it gets dark.

Listen Disney. I liked you. I really did. You made this very tired, busy, overwhelmed family happy for a really long time, which is why we were willing to spend our hard-earned money on you.

But until you see the error of your ways, until you realize that this new program you’ve implemented is excluding a significant portion of special needs families like my own, until you figure out a way to DO IT BETTER because you’re DISNEY after all, well, we’re gonna have to break up.

So please stop sending me letters in the mail proclaiming your love for us. Save your postage.

photo(8)

Because actions speak louder than words, and based on your actions Disney, you couldn’t give a crap about our special needs kid or the thousands of kids and adults like him.

But if you ever have a change of heart, look us up.

Now if you’ll excuse me, I have to Google some local truck stops.

10-4 Mickey.

Over and out.

 

 

 

Disney: Official Information Released Regarding Disability Access System Cards

Disney has officially released information regarding the Disability Access Service Card which will be replacing the current Guest Assistance Card program beginning October 9th (that’s next Wednesday by the way, so it’s coming up!) via its Disney Parks Blog:

  • Where do DAS Cardholders go to receive return times?
    At Disneyland Resort, guests will go to Guest Relations kiosks located throughout the parks to receive a return time. At Walt Disney World Resort, guests will go to the attraction to receive a return time.
  • Does a DAS Cardholder have to ride the attraction at the exact return time listed?
    No. Return times are valid until redeemed by the DAS Cardholder.
  • How long is a DAS Card valid?
    A DAS card is valid for up to 14 days depending on a guest’s ticket entitlement.
  • Is a DAS Card issued at one Disney theme park valid at other Disney theme parks?
    Yes, the card will be valid throughout the resort at which it was issued.
  • Why doesn’t Disney Parks ask for proof of disability, such as a doctor’s note?
    Disney Parks takes Guests at their word and there are legal restrictions around asking for proof.
  • Is this the only service available to Guests with disabilities?
    Disney Parks offer a variety of services to guests with disabilities, such as Disney’s Handheld Device that offers assistive listening, captioning and audio description. Additionally, Disney Parks has developed a “Guide for Guests with Cognitive Disabilities.” This serves as a tool on how best to experience its theme parks and is expected to be available online by mid-October.

For the complete FAQ visit the Disney Parks Blog.

I’m not sure how much of this is actually new information but it’s an official FAQ from Disney so it’s worth your while to look over it and see if it answers any immediate questions you may have.

I was also forwarded this statement from Disney:

On October 9, the process that provides access to attractions for guests with disabilities, known as the Guest Assistance Card, will be replaced with the new Disability Access Service (DAS) Card. Guests will request the new card at Guest Relations and DAS Cardholders will receive a return time for attractions based on the current wait time. The DAS Card is designed to provide the special experience guests have come to expect from Disney. It will also help control abuse that was, unfortunately, growing at an alarming rate.

For more information on this new card, please visit

We believe that the DAS card, with its virtual wait, will accommodate many of our guests with disabilities.

However, we also recognize that our guests with disabilities have varying needs, and we will continue to work individually with them to provide assistance that is responsive to their unique circumstances.

While each situation will be handled individually at Guest Relations, following are two examples of accommodations that could be offered based on a guest’s needs:

      For a Guest whose disability enables them to be in the park for only a limited time, the Guest might be offered an accommodation that enables them to use the DAS Card in conjunction with access to a number of attractions without having to obtain a return time.

       Another potential accommodation, based on a Guest’s unique needs, might include providing access to a favorite attraction multiple times in a row without having to obtain a return time.

If you need more information or have specific questions about an upcoming trip, please send an email to disability.services@disneyparks.com. If you are planning a vacation in the next few months, please include a contact phone number and the best time for us to reach you.

I emphasized the two statements above by underlining them and putting them in bold and italics because they are of particular interest to me, as they would directly affect my son and our potential future visits to the park (meaning, if they’re true, we may actually get to go back to Disneyland and Disney California Adventure Park).

Due to his specific needs and limitations, Andrew is unable to spend an entire day at the Disney parks, therefore our trips last only a few hours, and, thanks to the GAC, have always been incredibly efficient. I am crossing my fingers, toes, eyes, and any other body parts I can will into submission that this statement means what I think it means. Same goes for the ability to ride an attraction a few times in a row. There have been times we’ve literally gone to Disneyland just to ride one ride, two at the most.

I guess I can say with major hesitation that I have more hope today than I did just a few short weeks ago. I have no doubt that our voices have been and continue to be heard, and as I’ve said in previous statements, the frustration I’ve been feeling is because our family loves and treasures Disney and only wants to see it made accessible for ALL of us in a way that takes the unique needs of Disney’s diverse guests into consideration.

Basically, the program will either make sense or it won’t.

It will either provide ALL guests with appropriate and necessary accommodations and accessibility or it will fail to do so and break hearts in the process.

Like the rest of you, I’m hoping it’s the former and not the latter.

IMG_0903

 

Special Needs Parents: Why Taking Care of Yourself Should Be a Priority (Hint: The Statistics Are Scary!)

Hanging on the edge of the chair, suffering from a hangover I’ve seen it with my mother; she’s been caring diligently for my grandmother since she suffered a stroke in 2008.

I’ve seen it in the waiting room of Andrew’s physical therapist’s office, on Facebook posts, in the grocery store aisles.

Lately, I’ve seen an awful lot of it each time I have the misfortune of finding myself in front of a mirror. It’s a look that says, “I’m freaking exhausted, and there’s nothing I can do about it.”

Caring for someone else – someone who requires we go above and beyond standard-operating procedures such as the elderly, the sick, or those with special needs – means that there’s usually a visible veil of fatigue that surrounds us everywhere we go.

While it’s not surprising that taking care of another human being who is unable to fend for him or herself is both physically rigorous and emotionally draining, it may shock you to learn just how detrimental it can be to your health.

Consider, if you will, some of these somewhat startling statistics:

• More than 65 million people, 29 percent of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. – National Alliance for Caregiving in collaboration with AARP, 2009

• 14 percent of family caregivers care for a special needs child with an estimated 16.8 million caring for special needs children under 18 years old. 55% of these caregivers are caring for their own children. – National Alliance for Caregiving in collaboration with AARP, 2009

• 72 percent of caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities. – Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One; National Alliance for Caregiving and Evercare. 2006

• Caregivers who are often under extreme stress have been shown to age faster than their counterparts of the same age. This level of stress can take as much as 10 years off a family caregiver’s life. – Elissa S. Epel, Dept of Psychiatry, Univ of Calif, SF, et al,
From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49

• Studies have found that 36 percent of women caregivers handle the most difficult caregiving tasks (i.e., bathing, toileting and dressing), when compared with 24 percent for their male counterparts, who are more likely to help with finances, arranging care, and other less burdensome tasks. – Family Caregiver Alliance, National Center on Caregiving

• 40 to 70 percent of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression – Family Caregiver Alliance, National Center on Caregiving

I’m not trying to freak you out here; I mean, I’ve completely freaked myself out, but that doesn’t take much these days. What I am trying to do is motivate all of us to start taking better care of ourselves and get proactive about our health – before we end up needing a caregiver too.

I know I need to eat better, get more sleep, and schedule some one-on-one time with my doctor. I also know that if I don’t make a total commitment to taking better care of myself, I won’t be able to provide my special needs son, Andrew, with the kind of support he needs and deserves.

It’s just that simple, right? So why does it feel so impossible to do?

For me, it can often be a lack of willpower. If I’m truly honest with myself, I can easily fit in a 30-minute workout each day and do a healthy meal prep the night before. But when push comes to shove, I’d much rather unwind with a bag of white cheddar cheese popcorn from Trader Joe’s and catch up on Law and Order: SVU episodes. That sounds infinitely better than a brisk walk around the neighborhood and a baggie of carrot sticks, doesn’t it?

Those statistics scare me though, and if I’m going to be in tip-top mental shape to take on those grueling IEP’s and physically strong enough to assist my special needs son Andrew in whatever capacity he may need down the road, I have to be willing to put that bag of popcorn down and stop using simple carbs as a means of dealing with the total mind/body burnout that comes over me at the end of each day.

I will say this: the smartest thing I’ve done to take care of myself been to secure a weekly appointment with a woman who is trained to listen to people like me. I have a standing appointment each Friday afternoon to sit on her couch and fall apart while she figures out how to put me back together again. Some sessions are harder than others, and some leave me feeling like I can overcome anything, but both are necessary to my well-being as a parent of a special needs child who requires the kind of care and vigilance that can leave me breathless.

Start small.

I know it’s hard. Find 10 minutes each day to decompress somehow. It can be a hot cup of tea, curling up with a book, starting a journal, deep-breathing exercises, or a hot bath by candlelight when everyone in the house is fast asleep (that last one’s a joke because of course no one is ever asleep at the same time! I just wanted to make sure you were paying attention!).

Social media makes it easier now than ever to connect with like-minded folks who are well-versed in the demands of being a caregiver. Find time to virtually meet with people who wear the same shoes as you for a few minutes each day, and watch as your feelings of hopelessness and isolation turn into a sense of community and support. I rely heavily on my incredible network of special needs parents who don’t judge me when I start speaking in tongues as a result of my everyday stress. They are my herd and I love them.

We have to make ourselves a priority, or we are doomed to reap the consequences. It may feel like a luxury and you may feel pangs of guilt at first, but it can mean the difference between a healthy vibrant you and someone who vaguely resembles the person you once were.

Our loved ones depend on us, and are counting on us to do right by them. This includes creating an environment that fosters our own vitality, both inside and out.

By making a commitment to take better care of ourselves, we avoid the risk of mental burnout and physical injury – and as caregivers to those in our lives who rely on our strength and compassion, it’s a risk we just can’t afford to take.

Switch to our mobile site