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

Let’s Chat About Autism

Wednesday, March 27th, 2013

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

When this photo was posted on Parents Magazine’s Facebook Page, some wondered why I would even mention that my son has autism.

From the moment my son Norrin was diagnosed, I’ve been very open. I remember my mom first telling me that I didn’t need to tell everyone about Norrin. And when he was younger, it probably wasn’t necessary. But the older he gets, the more obvious it becomes. Rather than have people wonder, I’d rather educate.

There are so many misconceptions about autism. So many things that other parents and kids don’t know. And autism is unique to every individual.

There have been times when I’ve told people Norrin has autism and they’ll say something like, “Oh, I never would have guessed. I know someone with autism and they’re like ______.”

I talk about Norrin’s autism because I want people to know what our autism looks like.

I never fault anyone for not knowing about autism. But autism seems to become more prevalent, and the more I talk about autism the more I hear, I know someone with autism. I think autism is something everyone should know about – whether they have a personal connection or not.

Next Wednesday, April 3, Parents and Easter Seals will host an autism-themed chat on the Parents Facebook page from 1 to 2 p.m ET.

Join the Facebook event for the chat and remember to visit the Parents Facebook page on Wednesday, April 3 at 1 p.m. ET. We look forward to hearing your questions!

For more information please click HERE.

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.

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?”

Survey Says: 1 in 50 School-Age Kids Have Autism

Wednesday, March 20th, 2013

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

When I was growing up in the 1980s, I didn’t know anyone with autism. I didn’t even know what autism was –  all I knew about autism was Rain Man.

Norrin was diagnosed with autism in 2008. At that time, the statistics were 1 in 110 kids were diagnosed with autism. Then last year, the statistics increased to 1 in 88.  And now, new numbers reveal that every 1 in 5o school age children have an autism diagnosis.

Is autism an epidemic? Is it being over diagnosed by doctors? Is it like ADD? Are parents more aware? Or do parents just need to ‘get a grip?’ Almost everyone has an opinion.

(And let’s not even get started on what people think causes autism.) 

I don’t believe autism is an epidemic to freak out about. I don’t think it’s anything like ADD. And if someone told me to get a grip about my kid…I’d have some words for them.

But I do feel that in recent years, there has been a heightened sense of autism awareness – especially among new parents. Yesterday, I met a dad who said his son started Early Intervention services at sixteen months old. Norrin was around sixteen months old when I first suspected something was wrong. And I waited until Norrin turned two to start the evaluation process. I think if I were concerned today, I wouldn’t have waited.

The new statistic also found “that many children were being diagnosed with autism after age 7.” Autism is such a wide spectrum and I can understand how so many children fall between the cracks. And other studies have revealed that minority children are often diagnosed later than white children.

While the new numbers are important and raise many questions – I don’t think that’s  the conversation we should be having – not right now anyway. I think as parents, as citizens, our main concern is ensuring that kids with autism are getting the services and support they need. Because those are the numbers I’m really interested in seeing.

What are your thoughts/concerns on the latest autism numbers?