What Parents Wish People Understood About Kids With Autism

Tuesday, April 2nd, 2013

In honor of World Autism Awareness Day (and month!), I asked the good people of MyAutismTeam—a social network of some 41,000 parents—to share the following question. Here’s what moms and dads had to say:

I wish people understood that children with autism…

“Just want to be accepted like everyone else.”—Rebecca W.

“Just because you know a child with autism doesn’t mean you know what autism is like for every child with it. There can be some similarities but they have different strengths, challenges, fears and requirements.”—Kathy R.

“Our kids cling to what makes them feel safe. Routine is key.”—Alicia K.

“My son is a child first. Please don’t ever refer to children as so-and-so’s ‘special needs kid.’ Start with his name first. Invite them to parties or a get-together once in a while. Be brave and show friendship. We will love you for the effort!”—Tonya C.

“Just because they process differently, or it takes a few more times for an explanation to sink in, they’re not stupid.”—Jill B.

“That they are not misbehaved kids. Their senses are different…. You don’t know how many times I’ve wanted to tell someone off for staring when Shophia has an episode in public.”—Tiffany C.

“Their disability is not always physically obvious, but they have special needs just the same.”–Jennifer R.

“They don’t ‘suffer’ from autism. They suffer from people’s ignorance, hate, intolerance and judgment.”—Jada W.

“Be literal with them, they don’t understand hints.”—Teresa T.

“It is not contagious.”—Sandi B.

“Our children are not spoiled! We do things differently to accommodate their needs because that’s what works for them to be able to function!”—Maria R.

“I don’t want my son to be treated differently, I want him to be accepted like everyone else—with the understanding that he is a little slower than other kids his age. And he doesn’t understand sarcasm.”—Rande L.T.

“They are not stubborn, willful or oppositional. They lack coping skills and are anxious, fearful and afraid.”—Linda O.

“Staring, bullying and isolating someone with this condition is a sin! My Aspie told me he doesn’t feel like going out in public because he feels as though he’s in the way! Try swallowing that when your firstborn, most beautiful child says this to you!”—Toni H.

“They are smart and creative people with much to offer this world.”—Traci D.

“They have hopes and aspirations for a full, useful and independent life…and they can achieve it with community support and acceptance.”—Nancy J.

“They go to college too! So proud of my 21-year-old son who is getting A’s in Japanese and loving it!”—Kim R.

“My autistic grandson is not ‘retarded.’ I hate that word. He is a handsome, very intelligent boy. He just handles some things differently.”—Nancy M.

“Not all kids or adults are like Rain Man.”—Dannie M.

“My son’s condition is not caused by bad parenting.”—Lisa A.

“They are capable of falling in love and even getting married when they grow up.”—Anna V.

“How much more capable than what you may realize. Don’t sell them short or count them out.”—Lisa C.

“They are a gift like any other child. And they are some of the strongest people in the world.”—Shayla A.

Image of Autism Awareness Day note via Shutterstock

Why Doesn’t The Government Care About Curing Cerebral Palsy?

Monday, March 25th, 2013

Today is National Cerebral Palsy Awareness Day, part of a month-long campaign. And there is a whole lot of awareness to be raised, because there is a shocking lack of funding for CP research. (Warning: If you have a kid with CP, the following might make your blood pressure rise.)

More than 800,000 Americans have cerebral palsy, notes the non-profit Reaching For The Stars (RFTS). It’s the most common motor disability in children, and has a higher rate of occurrence than muscular dystrophy, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome and cystic fibrosis. There is no known cure, or means of preventing it. In more than 80 percent of cases of CP, the cause is unknown. As RFTS notes, “We still do not know much more about the underlying causes for prevention of CP than we did half a century ago.”

More troubling facts:

• Cerebral palsy receives no dedicated federal funding for research at the National Institutes of Health or the Centers for Disease Control. Data indicates that, in recent years, up to four times more NIH funding was dedicated toward research and surveillance of disorders that affect less than half as many people as those living with CP.

• Despite advances in prenatal and neonatal care, one study indicates the prevalence of CP is now as high as 3.7 per 1000 8-year-olds.

• CP is costly. Most children and adults who have it need long-term medical care. The average lifetime additional cost for the care of a person with CP versus one who doesn’t have it is $1.5 million.

What can you do?

Contact your U.S. Representative and Senators and urge them to support funding for cerebral palsy research. You can find your elected officials here.

What World Down Syndrome Day Means To Savannah Guthrie

Thursday, March 21st, 2013

In honor of World Down Syndrome Day 2013, TODAY co-anchor Savannah Guthrie has written a post about her Uncle Pierce. Please share it! It’s not just about a beautiful relationship—it’s about all the awesome people with Down syndrome bring to the world. 

On March 21, we mark World Down Syndrome Day — an opportunity to draw much deserved attention to a group of wonderful people that are contributing to their communities in exciting ways. For me, this day is personal; it’s a chance to remember and reflect on an individual who has had a huge impact on my life, my Uncle Pierce.

Pierce Franklin Long, Jr. was born on July 5, 1933. He was my mother’s older brother, my grandparents’ first child, their only son. Because he was born so close to the Fourth of July, my grandmother used to call him, “my little firecracker.” And it’s true that Pierce always sparkled with life and personality, with humor and charm.

Pierce was born with Down syndrome, but back then, the doctors didn’t really use that name for this condition. Attitudes were different, medical knowledge woefully incomplete. My grandparents were told he would never walk or talk, or be like any other little boy. They were told he likely would not live into adulthood. It was common practice then to put a child like Pierce in an institution.

My grandparents had a different idea.

Because of their vision and determination, Pierce grew up the center of love, attention and devotion in a warm and loving family. When his two little sisters came along (my mother one of them), they adored him, protected him, learned from him and taught him. He flourished. My mother says she can remember the elation the family felt when Pierce first learned to tie his shoes, to tell time, and later to read and write. These were milestones then. Today, I marvel at all that people with Down syndrome are able to achieve. I wish my grandparents were alive to see it.

When I was in high school and college, my grandparents and Pierce came to live with our family. I feel so lucky to have spent those years with him. He had many interests and passions. He was a devoted basketball fan – prone to wear his favorite basketball uniform day after day. He was affectionate, always ready for a hug and a kiss. Full of impish humor, he enjoyed teasing my sister and me, by asking us repeatedly how old we were, then guessing wildly inaccurate ages just to make us laugh. (“Are you 36?” he would ask us little girls with a mischievous smile.)

His nickname for me was “Vinny,” and he had a way of charming everyone around him. When I was a self-absorbed teenager, breezing past him or constantly on the phone, he would call out, “oh Vinny, your darling Uncle Pierce is talking to you!”

He was sensitive and emotionally wise. When my father died suddenly, our family was shattered. Sometimes, it was only Pierce’s simple kindness that could soften our grief. “I remember Charlie,” he would say. “I’ll say a prayer for him.”

Pierce reminded me every day what matters in life: goodness, gratitude, enthusiasm, warmth. He lived to a ripe old age with many friends and admirers. This day is close to my heart because he is close to my heart, and always will be. I hope people will take the opportunity to get to know those with Down syndrome who are living, working and like my uncle did, flourishing in their families and communities.

Photo courtesy of Savannah Guthrie

12 Times You’re Most Likely To Lose It As A Mom

Thursday, March 21st, 2013

1. Any time your child says “Whatever!” or “Really?!” or (the worst!) rolls her eyes.

2. When you’re trying to get out the door to go to work or take the kids to an event and you’ve asked them to put on their sneakers and coat approximately eleventy billion times and still, there they sit serenely on the couch, watching SpongeBob Squarepants.

3. Reading the book to your child for the 298th time. (But who’s counting.)

4. Kiddie meltdowns in the airport security line.

5. When you’ve just washed the floor and the kids/husband traipse in with the muddiest shoes known to mankind since The Age of Dinosaurs.

6. Watching your darlings bicker over who got the bigger slice of cake, and being this close to screeching, “WOULD YOU PLEASE GET A GRIP?”

7. The seventh time your child asks for a drink of water/something to eat/to check under the bed for monsters/to have more water/to make it cooler or hotter in the room after you’ve put him to bed. (Although the extra hugs, you sure don’t mind even if they are delay tactics.)

8. Dance recitals where you have to watch 19 other classes perform before you get to your child’s modern-dance rendition of Fill Me Up Buttercup.

9. When you are lying in bed, very sick with the flu or maybe a deadly plague, and your child keeps wandering in to ask Really Important Things like, “When are you getting me that lamp for my desk?”

10. Anytime you have to deal with insurance companies about claims for the kids or the family. Like, how did they lose them again? Where do they go? Is this some sort of experiment to test the patience of moms everywhere.

11. Fruitlessly trying to convince your child that it’s not OK to wear pajamas in public and giving up and letting her walk around the mall in her flannels. At least it’s not a nightie.

12. Train delays or traffic on your ride home from work as your child repeatedly texts “I need help with homework!”, “Mommy, when are you coming home?”, “MOMMY I NEED TO DO MY HOMEWORK!”, and “Are you almost home?”

How Special Needs Parenting Compares To Typical Parenting

Tuesday, March 19th, 2013

The Pew Research Center just came out with a major poll, Modern Parenthood: Roles of Moms and Dads Converge as They Balance Work and Family. It’s based on a survey of 2511 adults around the country. I read the results with much curiosity about how other parents’ lives compare to mine. I have one child with special needs, who has cerebral palsy, and one child with an attitude (who is sometimes a lot more challenging than her brother).

While my life is similar to other moms’ in many ways (juggling work and family and trying my best to hold it all together), it’s very different, too—exactly what occurred to me as I read through the findings. These are some facts based on my own non-scientific-but-very-real experiences.

Poll stat: 53 percent of working moms and dads polled with kids under age 18 say it’s difficult to balance job and family responsibilities

Special-needs parent fact: Given the additional medical appointments and therapies moms have to manage, I’d say that work-family juggling challenges are significantly magnified for parents of kids with special needs. Not a day goes by when I don’t think “Wow, this is hard”—and marvel that I haven’t run screaming down the street because I’ve finally lost it.

Poll stat: Mothers spend an average of 12 hours a week on childcare 

Special-needs parent fact: Our kids need more hands-on help, even as they get older. Max is 10 now. He finally potty-trained this year (THANK YOU, potty-training gods!) but still needs help with his pants, as well as hands-on care with feeding, dressing, bathing, eating and even at play (fine-motor skills are a challenge for him).

Poll stat: 73% of moms say they are doing an “excellent” job as a parent

Special-needs parent fact: I’m a good parent and yet, I never think of myself as doing an “excellent” job with Max. This is because there is always something I feel like I could be doing with him—some therapeutic exercise, say, or trying a new app that could help improve his reading skills. With so many parenting resources these days, perhaps a lot of mothers feel this way—but when you’re the parent of a child with significant delays and challenges, you truly never feel like you are doing as much as you could. So if you ask me what kind of job I do as a parent, I’d say “Good enough.” Because that’s the best I can do, and I have learned to be satisfied with that.

Poll stat: 37% of employed parents say they “always” feel rushed

Special-needs parent fact: If you took a look at the to-do lists of parents of kids with special needs, you’d probably feel rushed 100% of the time.

Poll stat: 32% of working moms with kids under 18 say they’d prefer to work full time

Special-needs parent fact: My Catch 22 is one I think many parents of kids with special needs have to contend with. Since Max was a baby, I’ve done full-time work in an office. This is partly for my mental well-being; I love my work, and I need to have that life (not to mention the income). But I don’t know that I’d ever say I wholeheartedly prefer it. I know that my son needs me and I have at times felt amazingly guilty for not being there for him.

Poll stat: 43% of married moms say they are very happy with their lives

Special-needs parent fact: The world may perceive us as being unhappier than other parents. And yes, we may very well have more pressures and stress. But the truth is, we get just as much bliss in our children as other parents do from theirs. They may have special needs, but they are not “defective.” They are our children. In fact, our happiness can be that much greater because our kids work so hard for their achievements. The first steps my son took at age 3 weren’t just milestones—they were miracles.

From my other blog:

A different kind of special needs: Helping siblings of kids with special needs

Breaking news: Special needs mom’s head explodes!

A day of freedom

Image of mother and child holding hands via Shutterstock