Who World Autism Awareness Day Is Really For

Tuesday, April 2nd, 2013

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

It’s been almost five years since my son, Norrin, was diagnosed with autism. Before the diagnosis, I had no idea what autism was. What it really was. Growing up, I didn’t know anyone who had autism. And out of all my friends, I was the only one whose child had any kind of disability. I was scared and alone and no one could answer my questions. There was no one to offer any words of hope.

When Norrin was diagnosed in 2008, every 1 in 110 children had autism, a recent survey reveals that 1 in 50 school-age children have autism. In the last five years I’ve guided friends through the steps of having their children evaluated and diagnosed – giving them the insight I wish I had when we were going through the process.

I’ve learned that Autism Awareness goes beyond parents raising kids with autism. With autism becoming so prevalent – I don’t think anyone can afford to not be aware. This month is for you.

We live in a need to know society. I needed to know what autism was months before Norrin’s first evaluation.

If you’re the parent of a typical kid. You need to know what autism is because it can prevent bullying. Jill of Yeah. Good Times explains why in her recent post Everybody thinks it won’t be their kid.

Tell your kid that my kid likes to flap his hands, run back and forth, and talk to himself. Tell your kid that they might see this happening and feel uncomfortable because they don’t know what’s going on, and tell them that it’s okay to feel uncomfortable, and they can ask questions, but it’s not okay to make fun of him. It’s not okay to call him names, or point and laugh, even if their friends are doing it. Tell your kid that my kid does these things because it makes him feel good, and while that might seem weird, it’s totally okay.

If you’re in customer service, you need to know that some individuals need a little more understanding, patience and compassion – especially when they are on school outing. Because as Sunday of Adventures in Extreme Parenthood writes it is “during these instructional trips [that] our children are making strides to claim their rightful place among society.”

If you work in education – teachers, principals, psychologists or social workers, you especially need to understand autism because so many school-age children are undiagnosed and in general education classes. You need to know the signs so that you can help that child get the help he/she needs to be successful in the classroom.

If you’re in law enforcement, you need to know how individuals with autism communicate, you need to be able to read their body language.

Even if you’re not a parent of a typical kid, in customer service or law enforcement – you still need to know about autism. Leigh of Flappiness Is wants shoppers to stop staring at her son a because  ”every autistic child who has it, is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.”

And if you’re a new parent – you especially need to know about autism. Because if you know the signs and have a concern. You can have your concerns addressed by a professional as soon you suspect your child has a delay.

Today is World Autism Awareness Day and April is Autism Awareness Month. Whoever you are, whatever you do – you need to know about autism. This is the day, the month to learn. And you can start by asking questions.

Join me – along with developmental-behavioral pediatrician Georgina Peacock, M.D., MPH, and board certified behavior analyst Patricia Wright, Ph.D., MPH - tomorrow for a Parents Magazine’s Facebook chat. We’ll talk about the early signs of autism, treatment options and services, and I’ll share my own personal experiences parenting an autistic child. Readers can participate in the chat by asking questions.

When: Wednesday, April 3

Time: 1 pm est

Where: Parents Facebook page

For more information please click HERE.

Check some of my other posts to raise Autism Awareness:

• What To Say to an Autism Parent
• “He Doesn’t Look Autistic” and Other Misconceptions
• How to be Friends with an Autism Parent
• 5 Things You Don’t Know About an Autism Parent
• No Need to be Sorry and Other Things You Shouldn’t Say to an Autism Parent

How To Be A Minimalist Parent

Thursday, March 28th, 2013

How can you enjoy life more and do less if you’re a parent? It seems like mission impossible. But a new book, Minimalist Parenting, written by Christine Koh of Boston Mamas and Asha Dornfest of Parenthacks, tells moms and dads exactly how to do that so your schedule, home, and brain don’t always feel like they’re bursting at the seams.

The authors

With smart, reality-checked strategies for divvying up more responsibilities with your partner, dealing with chores (who knew bill paying could be so Zen?), de-cluttering, streamlining the school year, managing meal planning and more, the book isn’t about being a crappier parent—it’s about rethinking and tweaking your parenting habits. There’s also a free online workshop—MinCamp—a series of 14 daily tasks to help you do less and get more out of life.

And how, you might wonder, does this apply to parenting a child with special needs? I wrote an essay for the book, and I’m sharing a portion of it here with the authors’ permission.

1. Let go of over-therapying your child.

Max gets a lot of therapy. So for his downtime, I don’t load it up with classes, reading time or intellectually-stimulating anything. As much as I’m tempted to, I let go—and let my son explored what he’d like. Going through a car wash twice? Sure! Sitting near an airport to watch planes take off? You betcha. I step back and let Max tells me what he wants to do and explore. It’s all good for his brain. It’s stimulating, in one way or another. (Well, we do draw the line at letting him watch “Cars 2″ five times in a row.) Max has a lot he can’t control in his life, from the stiffness in his arms to his challenges with speech; letting Max control as much of his free time as possible empowers him.

2. Let go of helping too much.

For many years, my husband and I had to spoon-feed Max. He had trouble grasping utensils and getting the food to his mouth. One day, when Max was six, I went to his school to fill out some forms. I stopped by his class at lunchtime. There sat Max at his desk, peacefully feeding himself. “He feeds himself?”! I asked his teacher, astounded. “Yes, of course!” she said. Hel-lo, codependency! Max was so used to us feeding him that he didn’t bother to try at home. When we finally started insisting he do so he resisted, but eventually he came around. It’s tempting to step in when Max’s physical challenges prevent him from doing things; I so desperately want to help. But in order for him to succeed, I have to help him less.

3. Let go of a timelines.

Back when Max was a tot, I tortured myself by reading books and newsletters about child development and milestones. Baby Max wasn’t hitting most of them, and I would despair. I finally gave the books away and unsubscribed from the newsletters. I accepted that Max was going to do things in his own time. I am grateful that they happen—not when they happen. This, I think, is good advice for any parent. Every childish unique. Every child does things when they are ready to, be it picking up a ball or potty training. Comparing your child to other kids does them (and you) no good. Let go.

Images courtesy of Christine Koh

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

How To Entertain A Kid Who’s Home Sick

Friday, February 22nd, 2013

It’s hard to know who’s feeling worse: your sick child or you, because it’s so sad to see them in discomfort (and, let’s admit, it’s no fun when they start the “Mommy-I’m-boooored” whining). Here, parent-proven ways to amuse a child who’s not feeling well.

FOR TODDLERS

If they’re stuck in bed…

Play “Capture the bunny.” Games don’t get much easier than this: Put your hand beneath your child’s blanket or comforter, hop it all around and tell him to try and “capture” the bunny. Bound to induce giggles in even the mopiest child.

And if they’re not stuck in bed…

Have a critter picnic. Spread out a blanket on the floor, gather a bunch of stuffed animals and teddy bears and some play dishes and cups, and have a little picnic. This is also a way to get your little one to down some soup or other food, if she hasn’t been so into eating. And if it just so happens that one of the animals is also ailing, your tot can give him some pretend medicine.

FOR PRESCHOOLERS

If they’re stuck in bed…

Do a shadow-puppet show. Just close the curtains, aim a lamp at a wall and use your fingers to create different animal shapes. Enlist your child’s imagination to  figure out what the shadow is—especially helpful if you have absolutely no clue what you’re doing, and her guess is as good as yours.

And if they’re not stuck in bed…

Make a feel-better story. Ask your child to put together a story about a kid who got sick and then got all better (and then hope she takes the hint). She can color pictures on construction paper, and you can help write captions. Use a hole puncher to make holes on the left sides of the papers, then tie them together with pipe cleaners.

FOR YOUNG SCHOOL-AGE KIDS

If they’re stuck in bed…

Play a bedroom game of I Spy. Give hints like “I spy with my little eye something blue” and have your child try to guess what you are talking about. Then, her turn!

And if they’re not stuck in bed…

Put together a cool craft box. Cover a shoe box with glued-on construction paper. Then let your child decorate it with crayons, markers, glitter, stickers, pom-pons or whatever you have on hand. She can use the box to store craft supplies or special treasures.

This post is sponsored by Little Remedies, makers of children’s medication without artificial colors, artificial flavors or alcohol.

When You Know One Special Needs Mom…

Wednesday, February 20th, 2013

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

A few weeks ago I went to a party. Now, it’s not often that I get to go out to a party on a Saturday night. And it’s certainly not often that I attend a party where I know no one other than the host. And as friendly as I am – I can be quite shy. I’m not good at walking up to strangers at a party and striking up a conversation. I can very easily hold up any wall.

But I really like the woman (another special needs mom who has been so helpful in my journey) who invited me and it was an opportunity to get out. When my husband dropped me off, I assured him I wouldn’t be home late. “I’ll be home before before eleven.”

I entered the apartment and kissed the host hello. I scanned the room even though I knew I wouldn’t recognize anyone. There were couples and clusters of friends in almost every corner. I poured myself a glass of wine and pretended to examine the art on the walls. (Thank goodness, my host had a beautiful collection to keep me occupied.)

A few awkward smiles and hellos to strangers later – I was ready to call it a night and be home in time to kiss my son Norrin goodnight.

Then my host started handing out stickers to some of the guests – on the stickers were 3 letters, “SNB” (Special Needs Board). It was a way for guests to identify other special needs parents. (Brilliant!)

Within minutes I was chatting with a couple whose son attended the same school as my son. Then I started talking to another  couple. By the time the party was in full swing – I was laughing with a group of women. All special needs moms. We shared our stories, exchanged advice, complained about the NYC school bus strike.

The thing I love about meeting another special needs mom for the first time is that automatic comfort level. The ability to have a conversation without having to stop and explain a term or acronym. That feeling that someone understands.

I had such a good time, I didn’t leave until close to midnight.

So the next time you’re invited to a party hosted by a special needs mom and you’re on the fence about going because you think you won’t know anyone. GO! Because if you know one special needs mom – you know a network of special needs moms.  And it feels good connecting with a network who gets you.