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

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

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

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

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?

These are the 10 states serving the highest number of families that have kids with disabilities; they include a mix of states with both big and small populations, along with richer and poorer states in terms of median family income (New Hampshire is the second richest, for instance, while Arizona is considered less affluent):

1. Alabama

2. Wisconsin

3. New Hampshire

4. Arizona

5. Montana

6. Louisiana

7. Minnesota

8. Vermont

9. New York

10. California

The states where Medicaid supports the lowers number of families that have kids with special needs: Idaho, Iowa, Arkansas, Illinois and Maine. Sadly, this may not be news if you live in one of those states.

In general, the states providing the best Medicaid services for people with intellectual and developmental disabilities are Arizona, New Hampshire, Oregon, Vermont and California; the lowest-ranking ones are  Virginia, Illinois, Texas, Arkansas and Mississippi.

The heartening news is that despite our continuously challenged economy, many states have made real improvements in the quality of services provided—although as the report notes, “There is still work to be in ensuring that kids and adults with intellectual and developmental disabilities can enjoy the same freedoms and quality of life as all Americans.”  Especially in terms of the care our children will need down the road; waiting lists for residential and community services remain high.

Support more quality Medicaid programming for those with disabilities by citing this report and contacting your Congressional rep (find contact info here).

From my other blog:

Another one of those unexpected milestones

How not to encourage your child’s obsession

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

Image of U.S. flag in heart shape via Shutterstock

Students with special needs nominated to be prom queens and king: It’s happened a lot in recent years. I’ve loved that trend, and whenever teens with different abilities are included in mainstream activities. Sometimes, though, it’s awesome to see kids with special needs banding together and doing their own thing. That’s what happened this Wednesday at Tahquitz High School in Hemet, California, which hosted the first prom for students with special needs in the district.

A special education teacher organized the event, as reported in The Press-Enterprise, which attracted 160 students. They arrived dressed up, posed for prom photos, danced a lot and generally had a great time (you know, like any teens). Not disclosed: Whether anyone spiked the drinks. You know, like any teens.

There were fifty general ed students on hand who’d volunteered for the event, and who surely picked up some valuable lessons.  As one told a reporter,  ”Don’t judge a book by its cover.” (see a gallery of photos here).

I’d love for Max to experience a prom someday. And if he dances up a storm with the friends he loves at school, well, that would be all sorts of amazing. Especially if he spikes the drinks.

From my other blog

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

How NOT to encourage your child’s obsession

A guy with Down syndrome becomes a web victim, and his parents sue

Photo credit: Stan Lim, The Press-Enterprise/PE.com

Yesterday was the last day of Autism Awareness Month. But for us autism awareness is year round. Over the last five years (since Norrin’s diagnosis) autism has become part of our normal and it’s been easy to take it for granted.

I expect to come home from work and find a therapist working with Norrin.

I expect Norrin to be in school twelve months out of the year.

I expect him to be a small class of six kids and three teachers.

I expect IEP meetings, evaluations and social workers showing up at our door.

I expect him to have difficulty transitioning from one routine to the next.

I expect him to have difficulty  with socialization.

I guess what I’m trying to say is: I’m used to autism by now. I’m used to way it has altered our lives.

But still there are moments when I forget.

Like this weekend when went to a kid friendly amusement park. And right before leaving, we walked into the gift shop. Norrin stood at the door, scanning the store before he saw what he wanted and made a beeline for it.

It’s a chunky yellow school bus. In big bold letters I see: 18 months – 4 years old.  A “baby” toy. (Norrin is seven.)

Norrin’s been eyeing this school bus the last three times we visited the park. And each time I’ve said no.

And I was ready to say again.

I know. I know. I know I shouldn’t care about these things. I know to look beyond time tables and milestones and age appropriate toys.

“He asks for it every time we come here. Who cares about the age,” my husband said. And I gave in.

But I refused to give Norrin the school bus in the car. He would have to earn it. I told him he could have the bus when we got home, after he cleaned his room.

As soon as we walked in, Norrin took off his shoes and socks and went to his room and moments later came back out. “I’m all finished,” he proudly proclaimed. He grabbed me by the hand and I followed him into his room.

All the toys were picked up. His books were put away. I could tell he was trying so hard to stand still. He was smiling, his big brown eyes sparkled. And while his hands were at his sides, his fingers were wriggling. His eager anticipation made me smile.

“How do you feel?” he asked.

“You did a good job. I feel proud.”

When I handed Norrin the school bus, he quickly ripped it out from its box and gathered some of his toy figurines to place inside. I watched him as he held the school bus at eye level, his free hand flapping with excitement.

“How about we play like this,” I said.  Then I showed him how to spread out his figurines all over his room. And then I showed him how to drive the school bus around, picking up the figurines for school. While Norrin was wheeling the bus, we sang “Wheels on the bus.”

I watched as he played with this school bus appropriate for a child years younger than him and he still needed help. We still continue to work on Norrin’s imaginative play skills.

Suddenly, it was like a blue light bulb just went off. And autism had become very real for me. I needed a moment to be aware of it and accept it. I’ve had these moments before. And I suspect I’ll have them again.

I like to think that I am autism aware on a daily basis. But sometimes awareness catches me by surprise.

Does autism catch ever catch you by surprise? What are your moments of autism awareness?

I’ve watched this video of Jack Carroll auditioning for Britain’s Got Talent again and again. Throughout the routine the 14-year-old, who has cerebral palsy, poked fun at himself and the challenges he faces, opening with the line “Don’t worry, I know what you’re thinking: Harry Potter has had a nasty Quidditch accident.”

http://www.youtube.com/watch?v=taTSxDVEHRM

Jack is genuinely funny, and he’s got great timing, too. One of the judges called him “a comedy genius.” As I watched him perform, I kept thinking: I hope Max can someday make fun of his own cerebral palsy.

If that sounds weird, I can assure you, it’s not something I’d ever put down as one of Max’s therapy goals. But here’s the thing: Jack is able to own his disability. As he said, “A lot of times in comedy, your strengths are your weaknesses.” If you yourself  display “the elephant in the room” (as he called it) then it makes people more comfortable.

I think of the gapes and stares Max gets from other kids. And how, if he were able to be self-deprecating, it would make kids more cool with him. Right now, he’s at the stage where he’s becoming aware that he has cerebral palsy. I don’t know when and if he’ll have the awareness to joke about it, I just hope he does.

Yes, I do mind when comedians make people with disabilities the butt of their jokes. That may sound contradictory, but consider this: When a person with disabilities can poke fun at himself, it makes him less of a person to be pitied, less of a victim. He can bust clichés. He can shift the power.

And I want my son to have all the power he can to charge through life.

From my other blog:

Free bikes and bike lessons for kids with special needs

Really fun therapy for kids with special needs: It’s called “pinball”

And now, a word from Max’s sleep-deprived dad

Image: Screen grab/YouTube video

The stats are shocking and sad: 1 in 4 girls and 1 in 6 boys are sexually abused by their 18th birthday, according to data compiled on adult men and women by the Centers for Disease Control and Prevention.

We live in a time when parents are fully aware of the need to speak to their children about sexual abuse, and where there is excellent information on how to do so (like this Parents Magazine article, Protect Your Child from a Predator). Sometimes, a book is a helpful way to open a discussion—why I recently read Jill Starishevsky’s book My Body Belongs To Me with my daughter. The author is an Assistant District Attorney in New York City, where she’s prosecuted hundreds of sex offenders.

In these YouTube-centric times, video can be a great way to engage a kid on a subject. So I was glad to find out yesterday that Starishevsky’s created a four-minute animated film, based on the book, to educate kids and empower them to speak up should anything happen. It was created to be accessible and appropriate for children as young as 3-years-old, and meant for parents and educators to watch with kids and open a dialogue on the topic. I think it’s excellent, and my daughter and I will be watching it together this weekend.

http://www.youtube.com/watch?v=a-5mdt9YN6I

From my other blog:

Happiness is not a purple light-up toothbrush

A great new way to describe kids with special needs

How to ace an IEP: Tips from a parent pro

Image/still from My Body Belongs To Me video