A Letter To Moms Who Fake Disabled Family Members To Cut Lines At Disney World

Thursday, May 16th, 2013

Dear Moms Who Fake Disabled Family Members At Disney World,

I couldn’t believe it when I read the newspaper story. “This is a new level of low,” I emailed the friend who had sent me the link.

It seems that, according to social anthropologist Wednesday Martin who interviewed you for her book Primates of Park Avenue, you have been paying big bucks to a company that hires out tour guides with disabilities so you can pretend they are part of your family. That’s enabled you to skip lines to attractions at Disney World and slip in via alternate entrances reserved for people who use wheelchairs or motorized scooters, or who have other special needs.

This is wrong on so many levels.

Perhaps you think it’s a victim-less thing to do. But the exposé will surely have an impact, in some way or other. Disney World is known for being wonderfully hospitable to people with special needs. When our family visited the park a few years ago, the staff could not have been more accommodating. Yes, we were given a special pass that enabled us to bypass most lines. This is because my son, Max, isn’t able to stand for long periods of time (he has cerebral palsy) and because large crowds freak him out. Getting this pass was a pretty straightforward process; who knows what new regulations might be put in place. This is good because it could help keep out fakers like you, but it may make things more difficult for those families who legitimately need and deserve these passes.

It’s also disturbing that people with disabilities are allowing themselves to be hired out for this purpose. Perhaps they need the work, but it demeans them as human beings. I am ALL for parks hiring people with disabilities to be actual tour guides. But when a company is supposedly hiring out tour guides with disabilities for the sole purpose of beating lines, that is shameful all around.

Last, have you considered what you are teaching your children by doing this? I’ll just remind you of one of the fundamental laws of parenting: Children learn not from what parents say, but from their actions. You are giving your children a spectacular lesson in how to be deceitful. You are showing them how to sneakily get around rules. You are teaching them to use people for their own selfish gains.

Please, sprinkle some of that Disney magical pixie dust on your souls and quit this.

Sincerely,

A mom of a kid with special needs

From my other blog:

Please, spare kids with special needs the pity

Should people who steal handicap parking spots be shamed on Facebook? 

How did you tell friends and family your child had special needs? 

Image: Flickr/Loren Javier

Five Years After An Autism Diagnosis (part 1)

Wednesday, May 15th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

In a few days we will celebrate our five year autism anniversary. I say celebrate because when I think of Norrin five years ago and I look at him now – I see a completely different kid. I have a lot to be grateful for. I have so much to hope for. But on the day Norrin was diagnosed with autism – May 19, 2008 – I couldn’t see any of that. Many people have read my blog posts and written to me asking how I came to be “okay” with autism. But I wasn’t always okay with it. Acceptance was a process for me. Any parent who has heard the words, “your child has autism” remembers everything they felt that day. Today I’m sharing that day with you and next week I’ll share what it took for me to be okay with autism.

On the day Norrin was diagnosed with Autistic Disorder and Global Development Developmental Delay, I felt my heart break. My husband, Joseph, had been so optimistic, so certain that it could not be autism. And I knew by the way Joseph squeezed my hand that his heart was breaking too. Joseph had all the dreams that a father has for a son and within seconds I could feel Joseph’s dreams crumbling. I could feel his leg shaking next to mine.

Even though I tried to prepare myself, there was that small big part of me that wanted to hear that Norrin was “typical” and that there was no need to worry.

On the day Norrin was diagnosed, I put my arm around Joseph in an attempt to comfort him and I thought of our wedding day. Everyone told us that we were perfect together. And then I remembered the moments after Norrin was first born: I immediately looked his wrinkled little body over, counted his fingers and toes and thinking that he was absolutely perfect. And there we were, this  seemingly perfect couple being told that our child was not.

We were handed a twenty-page evaluation, detailing all the things Norrin couldn’t do, all the milestones he had yet to reach.  At two years and three months old, Norrin had the cognitive level of a fourteen-month old and the language level of a seven-month old. I hated reading the evaluations: on paper Norrin sounded horrible. Nowhere in the evaluation did it talk about his dimpled smile or the sound of his laugh. Nowhere did it describe how his big brown eyes sparkled when he was happy. Or that he loved to read and was fascinated by letters and numbers.

Joseph and I cried in the car, neither one of us really able to comfort the other. Both of us thinking of all the things we could’ve done to prevent autism.

When we picked Norrin up from the babysitter, it was then that autism became painfully real.  Norrin was sitting in a playpen spinning the wheels of a car while the other children were playing. It was too easy to imagine how isolating and sad his life – our life – would be. This was not the life we were supposed to have, I thought.

Nothing I read prepared me for the pain, anger and sadness that I felt. On the day Norrin was diagnosed, I went into our bedroom, closed the door and buried my face in my pillow screaming as loud as could. Punching and kicking like a three year old having a tantrum. Why Norrin? Why Me?

Everyone kept telling me, “God doesn’t give us anything we can’t handle.” But autism and raising a child with a disability wasn’t something I wanted to handle.

On the day Norrin was diagnosed, I called up my best friend to tell her the news. After a few minutes, I asked how she was doing. She was seven months pregnant and excited about her baby shower. While I was happy for her, I couldn’t feel happy with her. Her pregnancy, her happiness and hope only reminded me of my loss.

On the day Norrin was diagnosed with autism, I cried myself to sleep. And I cried for many nights after that.

Part 2 to come: Wednesday May 22, 2013

Restaurants That Discriminate Against Kids With Special Needs: Watch Out!

Tuesday, May 14th, 2013

The Golden Corral restaurant in Westland, Michigan will be paying $50,000 to a family with kids who have a genetic condition, plus $10,000 in civil penalties—all because a manager flat-out refused to serve them.

Danielle Duford has four daughters; three of them have epidermolysis bullosa, a skin disorder that triggers blisters due to temperature changes or minor injuries (and results in scabbing). According to the Justice Department’s lawsuit, even though Duford informed the restaurant manager about her children’s condition and emphasized that they did not have a contagious disease, the manager asked the family to leave the restaurant. He claimed he’d received complaints from other customers.

The incident is in clear violation of Title III of the Americans with Disabilities Act, which prohibits public accommodations—including restaurants—from discriminating against people on the basis of disability. Imagine how horrified the mother must have felt and how ashamed her girls must have been, as if they don’t already have so much to contend with.

As the parent of a kid with special needs, it is heartening to see justice served for blatant discrimination like this. Restaurants can be tricky territory when you have a child with disabilities, especially if you happen to be seated next to ignorant idiots. Back in January, a Houston waiter made headlines for refusing to serve a man who asked that his family be moved away from one who had a five-year-old with Down syndrome and who is said to have commented, “Special needs children need to be special somewhere else.” That incident was tried in the court of public morals, and that man condemned.

I hope this settlement attracts a whole lot of attention, and sends a clear-cut message to restaurants: Discrimination against people with special needs will not be tolerated. As Eve Hill, Senior Counselor to the Assistant Attorney General for the Civil Rights Division said, “No one should be excluded from participating in the basic activities of daily living on account of fears of their disability, nor should children be shamed from going out in public.”

From my other blog:

A waiter stands up for a kid with Down syndrome: Props!

Congrulations: You’re Mom of the Year!

Sometimes we are THAT special needs family

Image of girl eating baguette via Shutterstock

What Special Needs Moms Really Want For Mother’s Day

Thursday, May 9th, 2013

All I want for Mother’s Day is to sleep in, till about 10:00 a.m. or so. No breakfast in bed, please! I just want to be served straight up, uninterrupted, really deep sleep.

Don’t get me wrong: Flowers would be lovely and all, but sleep is what I dream of. When I’m able to get quality sleep, that is. I’m usually up till midnight or so working or doing chores. Max usually wakes up in the middle of the night and tries to crash in our bed. On weekends, the kids are up and at ‘em around 7 a.m. or so, but lately Max has had this lovely habit of rising at 5:30 in the morning.

Earlier this week, I asked Facebook friends what they’d like for Mother’s Day, and I’m in excellent sleep-deprived company: sleeping in, “a nap” and “uninterrupted sleep” were the most popular contenders (with a few chocolate-covered strawberries thrown in). Looks like moms of kids with autism have the same thing in mind! I’d also like a few hours in the house alone, but I think that’s maybe illegal to suggest to the kids as a MOTHER’S day activity, and could result in years of therapy, so I won’t be mentioning that.

Actually, the majority of things on mom’s wish lists cost no money whatsoever—see how easy it is to please us, Dads and Significant Others?! Here are some things moms of kids with special needs want most this Sunday.

All I Want for Mother’s Day Is….

“For someone to clean my house and fold all of the laundry.”—Deborah Walker

“A day of peace—with no agenda, fighting or selfishness. A day when my entire family can think about something other than themselves and time slows down to a calm & relaxing pace.”–Jennifer Lee Black

“Flowers, a meal made by someone besides myself, and a nap. In that order.”—Sunday Stilwell

“To one day hear my son call me Mama. Whether it be this Mother’s Day or in ten years from now. I’ll be patient.”—Nicole Bellefleur Valdron

“Acknowledgment.”—Rachel Maurer

“For my children to be healthy and happy!”—Jennifer Sellers Campbell

“A meal that I don’t have to cook or clean up from, and that I can actually eat without jumping up every 5 seconds to get someone something.”—Cindy Turner Detlefs

“To be able to spend a lot of time with my own mom.”—Jenny Saul-Avila

“For my kids to put something back from where they got it.”—Chrisa Hickey

“Positive attitudes all around me.”—Amanda Evangeline Cleland Maddox

“An afternoon snuggling on the couch with a movie.”—Amanda Guyton

“I am going all out with this one. I want a whole 24 hours to myself! That would include uninterrupted sleep, meals and at least one hot bath.”—Jessica Hamilton

“A housekeeper or a gardner. Either one would be great!”—Kate Anders

“An uninterrupted meal! Any meal!”—Sonia J. Lopez

“Honestly? Something—anything—that lets me know my kids still like having me as their mother. They’re 18 and 23, but I’d settle for a short note on lined paper.”—Laura Raymond

“For my kids to go one day without having a fight that turns into a major meltdown!”—Amy Benton Bradley-Hole

“A morning snuggling with the kids over books or The Wizard of Oz while my husband gets up and makes breakfast. And a Bloody Mary—or a Mimosa, I’m not picky.”—Helena H

“A massage!”—Rebecca Uccello

“Quiet.”—Jamie Ponder Prince

From my other blog:

Congratulations: You’re Mom of the Year!

Top 20 Reasons Moms Of Kids With Special Needs Rock

20 More Reasons Moms Of Kids With Special Needs Rock

Image of woman sleeping in bed via Shutterstock

A Mother’s Day Wish List For An Autism Mom

Wednesday, May 8th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

Sunday is Mother’s Day and when I was growing up, my mom used to say that all she wanted was peace and quiet. She never asked for anything or expected anything more than a card from us and/or my dad.  Now that I’m a mom, I feel the same way. Just this morning I told my husband not to buy me anything for Mother’s Day. Well I actually said, “Please don’t buy me clothes because if you buy something too small, I’ll feel bad.” (I’ve gained weight and my husband, though incredibly thoughtful, is known for buying me the clothes two sizes too small.)

Last night I posted a question to my Facebook page. I asked what autism moms what was on their wish list for Mother’s Day. I loved all the responses so much I’m sharing my favorites below:

A Day Free From Housework. Wouldn’t that be lovely! If I walked in and found someone else cleaning, I’d be one happy mom.

To Hear “I Love You.”  Kids with autism don’t often express themselves spontaneously. Norrin rarely says “I love you” on his own, I always say it first. And kids who are non-verbal, cannot say “I love you” at all.  If you know a mom with a non-verbal child, maybe you can help them make a special card to give as a gift. If a child is verbal, maybe you can prompt them to say “I love you.” (Typically, I’m not a fan of prompting “I love you” but in some cases – I’m okay with it.)

A Mani/Pedi. YES PLEASE! Autism moms rarely treat themselves. A mani/pedi would make her feel pretty and rejuvenated.

A Day Out with Girlfriends. Every mom needs girl time.  If your bestie is an autism mom, give her  a call and take her out for a cup of coffee, a walk or a mani/pedi (see above!).

Dinner & Dishes. Give an autism mom a break. Cook her a nice meal and do the dishes. Let mom kick back on the sofa.

A Movie. While mom is relaxing after that delicious meal you cooked, let her watch her favorite movie in total peace.

A Good Book. If movies aren’t her thing – give her some time to curl up with a glass of wine and a good book.

SLEEP. You want to make an autism mom happy on Mother’s Day? LET HER SLEEP. Seriously. Close the bedroom door, keep the kids busy and just let her sleep. Let her wake up on her own. It could be the best gift you give her.

I’d be happy with any of these things on Mother’s Day. What’s on your Mother’s Day Wish List?