Archive for the ‘ Diagnosing ADHD ’ Category

Helping Family Understand Autism

Wednesday, March 19th, 2014

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

I didn’t know anything about autism when my son, Norrin, was first diagnosed. Many friends and family dismissed my concerns and tried to assure me that Norrin was “just fine.” Autism is an invisible disability and it’s hard trying to make sense of something you can’t see. For a long time time after Norrin’s autism diagnosis, I had a tough time trying to get my loved ones to understand – including my mother. Over the years my mom has learned to understand autism and become one of Norrin’s fiercest advocates.

The April issue of Parents magazine is dedicated to Life in a Special Needs World. And family plays a huge part in the life of a special needs child and their parents.

While there are some in my family who still don’t understand Norrin’s autism, there are many that do. And I realized that in order for my family to truly understand autism, they needed to be involved. Here are 3 ways to include family and friends to help them better understand your child:

Bring them to an IEP meeting. No one should have to attend an IEP alone. The IEP meeting is open to anyone who knows and loves your child. Invite a friend or family member – they don’t have to say anything or even be familiar with special education. They just have to be there next to you. Let them experience a moment in your special needs life.

Let them sit in on a therapy session. The next time your child has an therapy session, have your friend or family come over. They don’t have to participate or assist – they just have to observe. Let them see what your child is like, how hard they work and what they are capable of doing.

Be completely honest. As special needs parents, we celebrate every achievement. Every milestone matters and we want to brag about our kids. But if you want your family to really understand, you need to go beyond the highlight reel. You need to share the tough stuff too.

From my other blog:

For more ways to help friends understand Autism, download Autism Speaks Family Support Tool Kit.

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

Add a Comment

How Autism Moms Parent Differently

Thursday, February 27th, 2014

Moms who have kids with autism are less likely to set rules than other parents, says a study published in the March issue of the Journal of Autism and Developmental Disorders. These moms more frequently rely on positive reinforcement, encouraging good behavior rather than focusing on the bad.

Researchers asked 1000 mothers of kids ages 6 to 18 in Belgium and the Netherlands to complete a questionnaire about parenting tactics; 552 of them had a child with autism. Moms of kids with autism were more likely to adjust their approach to suit their children’s needs. They were also less controlling than other parents—yet more involved in problem-solving for their kids.

The results may come as no surprise to autism moms or to mothers of kids with other special needs. My son, Max, has cerebral palsy, and I’ve had to experiment to find the right discipline tactics. For years, Max didn’t yet cognitively understand a lot, and so threatening a punishment had no effect. Often the best approaches I found was to praise him for behaving well. When he said “No” instead of screeching in frustration, for example, I’d say “That’s great that you are using your words!” (Positive parenting also works well on feisty “typical” 9-year-olds who may or may not be my daughter.) What’s also worked for us in terms of setting rules is having a reward system in place. Max knows that if he finishes his homework, he is allowed to watch one YouTube video of fire trucks, one of his fascinations. Fellow blogger Lisa Quinones-Fontanez of Autism Wonderland finds it helpful to have a list of house rules (including “Walk nicely—no running” and “Listen to Mommy and Daddy”) that she can point to and go over with her son.

Recently, when Max refused to stop stomping his legs against the floor as he watched TV—a habit he developed months ago that showed no signs of abating—I decided to let him deal with the consequences. One framed photo had already fallen off the wall and broken, as a result. Then it happened again. This time, Max wailed for a long time.  ”I’m sorry!” he said, again and again. And you know what? He’s stopped stomping.

Parenting and disciplining kids with special needs has its special challenges. And yet, in many ways, it’s like parenting any kid: You have to adapt your approach to suit your child.

From my other blog:

The question I shouldn’t have asked about my child with special needs

7 ways to encourage play for kids with special needs

On giving in to your kid’s quirks

Photo of boy sitting in field via Shutterstock

Take our super-quick quiz and find out what your parenting style is.

Early Signs of Autism
Early Signs of Autism
Early Signs of Autism

Add a Comment

Hooray For Cheerleaders With Special Needs

Thursday, February 6th, 2014

There’s a trend out there worth cheering for: more teens with special needs are becoming cheerleaders. I’ve been reading articles about girls with special needs joining squads, as Rachel Massingale above did at Centennial High School in Boise, Idaho, this year.

Cheerleader Megan Squire, of Verrado High School in Buckeye, Arizona (above), made headlines last year after starring in a video for a Katy Perry music contest. In November, Katy took her to the American Music Awards.

The Sparkle Effect is a nonprofit that encourages teens to include students with special needs—including Down syndrome, autism, and cerebral palsy—in high-school cheerleading programs. To date, there are 122 Sparkle Effect inclusive dance and cheer teams around the country. Unfortunately, schools aren’t always so open-minded. Last fall, the parents of high school freshman Brittany Davila, who lives in Deer Park, Texas and has Down syndrome (that’s her in the center, above), had to put in a special request so she could do her cheer thing; officials wanted to keep her in the stands, citing safety concerns.

Inclusive cheerleading squads are awesome, but I also love the ones out there comprised entirely of people with disabilities. There are the Shining Diamonds (above), a cheerleading team in Helena, Alabama made up of people ages 4 to 31 with special needs who travel to competitions throughout the Southeast (here’s their Go Fund Me page). And the Dakota Spirit Sparklers, an adaptive cheerleading team in Sioux Falls, South Dakota.

Either way, it’s A Good Thing for the world to see that having special needs doesn’t make you any less capable of expressing enthusiasm and getting into the spirit of a game.

From my other blog:

Tracking devices for children with autism and other special needs 

Jobs for people with disabilities, and a flash of hope

Birthday love for my other special child

 

Sign up to get parenting tips and tricks sent right to you inbox!

Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?

 

Images: Rachel Massingale/screen-grab, KTBV video; Brittany Davila/screen-grab, KHOU video; Shining Diamonds, Go Fund Me

Add a Comment

A Bride Shares Her Wedding With Women With Special Needs

Thursday, January 30th, 2014

I try hard not to think too much about Max’s future. Long ago, I learned that it mostly made me anxious, which did me and Max no good whatsoever. And so I do my best to teach, enable and encourage him, and I hope for the best. Sometimes, though, I wonder about whether he will get married. Given that he’s 11 years old, he’s got plenty of time. (Once, I asked who he’d like to marry, and he answered “Lightning McQueen.”) Still, it’s one of those life happinesses you want for your children, and impossible to ignore.

I saw a video the other day that made me wistful. Vantrease Blair helps run a home for people with disabilities in Orlando. After getting engaged and planning her big day, Blair decided to include seven women from the home in her ceremony. “I wanted to give them the wedding of their dreams and, luckily enough, I married someone who was right on with that and said, ‘Okay, let’s do it!’” she said.

The women picked their white dresses, bouquets, flowers, cakes and wedding albums. Some wore tiaras during the ceremony and some, veils, as they watched Blair take her vows. They all glowed. Afterward, the newlyweds held two receptions: One for themselves, and one for the seven ladies.

Watching the women, you couldn’t help but feel happy for them. And yet, I also felt a bit sad. Were they truly incapable of getting married, even if not in the traditional way? In recent years, I’ve read amazing stories about people with special needs falling in love and marrying, including people with Down syndrome and intellectual disability. As the mother of one bride with cerebral palsy said, “There is no disabled love. There is only true love.”

Words to hope by.

From my other blog:

Couples with disabilities: 5 love stories to celebrate

How raising a child with special needs affects your marriage

Disciplining kids with special needs

 

Image: Screen grab, CNN video

Add a Comment

Defending Jenny McCarthy

Wednesday, January 8th, 2014

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

Last week, my Facebook feed blew up with several articles stating that Jenny McCarthy’s son may not have autism. A few of the articles were recent, citing articles that dated back to 2010.

Maybe I’m still feeling warm and fuzzy from the holidays or maybe it’s because one of my New Year Resolutions is to be more understanding. Whatever the reason, I found myself feeling a little sorry for McCarthy.

I am not a fan of Jenny McCarthy. I don’t agree with any of her views regarding vaccines as a cause nor do I strive to cure my son, Norrin, of autism. Norrin isn’t on a special diet and he’s never seen a Defeat Autism Now (DAN) doctor. And when I heard McCarthy was going to be on The View, I cringed because (I think) she is the last person who should have an open platform to discuss autism awareness.

Autism moms either love her or hate her. Many pediatricians wish she’d keep her opinions to herself. I think Jenny McCarthy’s views on autism create fear and guilt. So why should I care if someone writes that McCarthy’s son may not have autism?

We cannot expect people to accept autism and be aware if we continue to challenge what autism looks like. Autism is a broad spectrum disorder and it looks different for every individual. And an autism misdiagnosis is not out of the realm of possibility for anyone- especially since the criteria has recently changed.

Back in November I wrote This Is My Son. This is Autism describing what autism looks like for us. Someone questioned whether or not Norrin really had autism. And it bugged me. I felt judged. I felt as if I had to defend my son’s autism diagnosis to this person who never even met him. It wasn’t the first time someone questioned Norrin’s diagnosis. People often ask me if I’m sure because Norrin looks so “normal.”  After five years, I’m quite certain my son has autism.

In response to the articles, McCarthy took to Twitter to justify her son’s diagnosis:

Evan was diagnosed with autism by the Autism Evaluation Clinic at the UCLA Neuropsychiatric Hospital and was confirmed by the State of California (through their Regional Center). The implication that I have changed my position, that my child was not initially diagnosed with autism (and instead may suffer from Landau-Kleffner Syndrome), is both irresponsible and inaccurate. 

I’m not a doctor and I’ve never met Jenny McCarthy’s son. I can’t say whether or not McCarthy’s son has autism or if it’s something else. And I don’t think anyone else should either. Not unless it’s a doctor or medical professional who has spent time with McCarthy’s son and reviewed all of his medical history and evaluations.

I don’t agree with anything Jenny McCarthy believes when it comes to autism, but I believe that her son was diagnosed. And I believe that everything she has done – whether I agree with it or not – has been because she loves her son. And I believe that if there was a misdiagnosis, she’s bold enough to speak out on it. But it’s not for the internet to decide.

Because no mother should have to defend or justify their child’s autism diagnosis. Not even Jenny McCarthy.

Has your child’s diagnosis ever been questioned?

image via: Wikimedia Commons

Add a Comment