Archive for the ‘
SPD ’ Category
Wednesday, May 22nd, 2013
Something major has been happening in recent years: People are making major public reparations after they’ve offended people with special needs. Two cases involving kids have recently made headlines. First, after a Chevrolet car dealer in Pocatello, Idaho ran a radio ad that asked, “Are you driving a wimpy truck? Do your kids take the short bus so they won’t be seen in it?” and parents of kids with special needs voiced outrage over the derogatory reference to special ed, the dealer yanked the commercial off air—and is now working on promotions for the state’s Special Olympics.
Around the same time, the Disney Channel pulled an episode of Jessie that made a kid with a gluten allergy an object of ridicule (at one point, another character throws pancakes in his face and everyone laughs). It takes a lot for a major entity like Disney to admit they’ve done wrong, but after a mom of two kids with celiac disease started a change.org petition, Disney announced on Facebook “We are removing this particular episode from our regular programming schedule…. Please accept our apologies for the upset this episode caused.”
It is hardly progress that these offenses are still happening, and that people see nothing wrong with shaming kids who has special needs. It’s disheartening, that’s what it is, as the parent of a kid with special needs. It tells me that we still have a looong way to go for the world to accept kids like Max, who has cerebral palsy. At the same time, though, it is gratifying to hear the apologies. Perhaps the people responsible for these slams will learn their lessons—or maybe they’re just putting on a “sorry” face because social media has shamed them into it. (Or, as may be the case when celebrities use the word “retarded,” their publicists made them.) But no matter what, these stories are raising major public attention and making people more aware that our kids deserve respect.
From my other blog:
Please, spare kids with special needs the pity
How not to encourage your child’s obsession
How did you tell friends and family your child had special needs?
Image of “Mistakes Behind You” road sign via Shutterstock
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
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
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
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: Gift ideas for mother's day from moms, health, mother's day, sleep, Special needs, What moms want for mother's day
Tuesday, May 7th, 2013
Only fifteen states provide support services to a significant number of families with children who have disabilities, per United Cerebral Palsy’s The Case For Inclusion report. Recently released, it tracks the how well Medicaid programs in all 50 states and the District of Columbia serve those with developmental and intellectual disabilities.
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
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: Best states for kids with special needs, health, The Case For Inclusion 2013
