Archive for the ‘ Children With Special Needs ’ Category

What Kids Want To Be When They Grow Up: A Fascinating Poll

Tuesday, September 30th, 2014

The number-one job kids would like to have they grow up: superhero. That’s per a new poll of 3910 adults who are parents to children under age 10. Other career aspirations that top kids’ lists (in descending order): celebrity, doctor, President of the United States, teacher, prince/princess, astronaut, chef, police officer and Santa. (Apologies, Santa.)

The majority of parents, 65 percent, said they would like their children to someday follow in their career footsteps. Parents noted that the top things they believe are influencing their kids’ ambitions are TV shows and movies.

Both my kids think they know what they want to be when they grow up. Actually, with my son, it’s more like an obsession. We are not sure how or why Max decided on a career as a firefighter, but he talks about it all the time—and wears a plastic Fire Chief hat as often as he can (school and bathtime excluded). Max may have disabilities, but who am I to discourage him? Perhaps, someday, there will be a position for him in a fire department. For now, he is content to visit our local fire station every weekend. This past weekend, we took him to the FASNY Museum of Firefighting in Hudson, New York, and it was like he had reached nirvana, so blissful was he.

If I had answered that poll, conducted by Coupon Codes Pro, I would have said that parents are most likely shape their children’s career aspirations. My daughter wants to be a writer and editor when she grows up, just like Mommy. She’s started her own blog, and posts when she feels like it. I have to admit, I love it. I saw it coming: Back when she was little, one of her favorite games was for me to write out sentences that had spelling errors, and then she’d fix them with a pencil.

Whatever my kids do when they grow up is going to be fine with me, because it’s not something I can control. I do not know what the future holds for Max, both in terms of his development and the kind of work options that will exist for people with disabilities years from now. I do not know what my children’s interests will be when the time comes for them to choose jobs. Right now, I’m glad they’re taking an interest in work. Whatever career they ultimately choose, I just want them to be happy. 

From my other blog:

Special needs families: Not so different from other families

Those moments when you feel the weight of special needs parenting

What it’s like to live with a hidden disability

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A Happy Ending For The Sick Baby Facebook Dissed

Tuesday, September 23rd, 2014

Yesterday, a miracle happened: Hudson Bond, 9 weeks old, received a new heart. He and his parents have been through a lot in his short life—including some emotional turmoil wrought by Facebook.

When Hudson was born in July with cardiomyopathy, a type of heart disease, doctors told his parents that he’d need a transplant. So his father, Kevin Bond, did what many parents of sick kids do: He created a Facebook page. Kevin hoped that Hudson’s Heart would spread the word about his son’s need for a new heart and raise funds for expenses. One day, he decided to pay Facebook $20 to “boost” a photo of his son lying in the Pediatric Cardiac ICU at Duke Children’s Hospital. Only Facebook rejected the photo.

As Bond wrote on Hudson’s Facebook page, “Facebook thinks my son is offensive.” He went on to share the message he’d received: “Reason(s): Your ad wasn’t approved because the image or video thumbnail is scary, gory, or sensational and evokes a negative response. Images including accidents, car crashes, dead and dismembered bodies, ghosts, zombies, ghouls, and vampires are not allowed.”

Bond was shocked. Attempts to appeal the decision didn’t work, he said. “Facebook, you should be ashamed of yourself,” he wrote. “Of all the garbage you endlessly pedal all over the Internet, a picture of my son is where you draw the line? Disgusting.”

As word began to spread, a Facebook spokesperson issued a seemingly heartless statement: “This was a mistake on our part, and the ad has been re-approved. We apologize for any inconvenience this caused the family.”

The response wasn’t enough for Kevin Bond. As he said, “Inconvenience was never an issue. Having my beautiful son compared to dismembered bodies, vampires, zombies, etc. hurt me, and my family.” Facebook eventually called and explained that an “automated system” blocked the image, then offered $10,000 in free ads.

Baby Hudson isn’t out of the woods yet; doctors are monitoring him to make sure his new heart is working well, and that no complications set in. But he is a lucky kid. As Kevin Wrote yesterday, “He’s a brave little boy, with a brave new hrart, from a brave family suffering an unspeakable loss. From our family to yours, wherever you are, we love you. Please join us in praying for comfort, light and healing.”

Despite Facebook’s major gaff, ultimately social media has done good: People have contributed $141,960 to date on Hudson’s Children’s Organ Transplant Association page alone, plus additional money through other fundraisers. The family plans to donate any extra money to families of children in need of organ transplants.

From my other blog:

A kid for just a little longer: The joys of parenting children with special needs

The best bike ride of my son’s life

Exactly how to deal if you think your kid has lice

 

Images: Facebook, Hudson’s Heart

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When People Named Kanye And Kim Can’t Include People With Disability

Thursday, September 18th, 2014

By now, you’ve probably heard about the recent Kanye West incident. On tour in Australia, he asked his audience to stand up—unless, he said, “You got a handicap pass and you get special parking and s**t.” When a couple of people in the audience didn’t get up, he singled them out until it was confirmed that they did, indeed, have disabilities and could not stand up and dance. Then the concert went on.

Much social media outrage ensued. Disability rights groups in Australia demanded an apology. Kanye’s response: He played the victim. “I’m a married Christian man with a family,” he proclaimed to an audience. “At my concerts, I make sure everybody has good of a time as possible, so all this demonizing me it ain’t going to work after a while.”

Not surprisingly, wife Kim Kardashian had an equally weak defense. She posted a video of his performance on Instagram and wrote, “What an amazing Australian tour! Its frustrating that something so awesome could be clouded by lies in the media. Kanye never asked anyone in a wheel chair to stand up & the audience videos show that. He asked for everyone to stand up & dance UNLESS they were in a wheel chair. #JustWantedEveryoneToHaveAFunNight #TheMediaTwistsThings”

This is hardly about Kanye mistakingly calling out people with disabilities in the audience. And clearly, this isn’t about some well-intentioned singer getting bashed for no reason. It’s about him publicly leaving out people with disabilities. Think about it: How would any one of us feel if we were one of thousands in an audience and everyone was asked to engage except us? Couldn’t he have at least said, “And if getting up’s not your thing, wave your hands in the air” or something like that?

Kanye and Kim are not exactly models of empathy and goodness, but still, their mindsets aren’t uncommon. I’ve seen this as the mom of a kid with cerebral palsy. Forget about people refusing to accommodate Max—they just don’t think to include him, whether it’s kids playing a game at a party or on the playground. It’s often up to me as his mom to pave the road for him. I am always standing by, but I ache for this sort of inclusion to happen naturally.

One good thing to come out of the Kanye kerfuffle: It’s getting people talking about how we treat people with disabilities.

From my other blog:

A kid for just a little longer: The joys of parenting children with special needs

On not hoping too hard that your child will develop

What’s that perfume I’m wearing? Eau de Pee

 

Image of Kanye West via Shutterstock

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Autism and Birthdays: 5 Ways Elf on the Shelf Can Help

Wednesday, September 17th, 2014

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

We adopted “Elfie” two Christmas’ ago. Our Elf on the Shelf really helped Norrin understand the magic of Christmas. Norrin knows it’s September and he’s already started giving me his Christmas list. I love that Elf on the Shelf has been a part of his understanding of the holiday season.

When I heard about Elf on the Shelf: A Birthday Tradition – I knew it was something I wanted to do with Norrin.

Tomorrow is actually my birthday. When I was talking to Norrin about it he immediately started reciting his birthday wish list. I explained to him that on my birthday, I get presents – not him.

Norrin will be nine in January and birthdays have always been tricky for us. We haven’t had a birthday party since he turned three. It’s easier to celebrate in school. And January is always a hard month to plan for since the weather in New York can be unpredictable. But we still want his birthday to be special and build anticipation to the day. I know Elf on the Shelf: A Birthday Tradition will help!

Now I know some parents are hesitant about Elf on the Shelf and feel the Pinterest pressure. But Birthday Elf is super easy and fun.

The Elf on the Shelf®: A Birthday Tradition tells the little-known story of how Santa’s finest helpers celebrate birthdays at the North Pole—and how you can invite your scout elf to share that tradition with YOU! Each kit includes special instructions for inviting your scout elf for a birthday visit, and a festive birthday outfit for your scout elf to slip into before the big day! Also available—the Birthday Countdown & Game and the Birthday Chair Decoration Kit.

5 ways Elf on the Shelf: A Birthday Tradition Can Help Your Child With Autism Feel the Birthday Magic

Build Anticipation. Unlike the holiday season, your Elf appears only on the day of your child’s birthday. You can use the Birthday Countdown & Game (or any other calendar) to count down the days until your child’s birthday and their Elf arrives. It gives kids something extra to look forward to.

Understand Birthdays. Many kids – including my own – have difficulty understanding that everyone has their own birthday. If you have more than one child in the home, the Elf – along with the Birthday Countdown & Game – can be your family’s way of distinguishing birthdays.

Sparks Imagination. Imaginative play doesn’t come naturally to Norrin. But he is getting so much better! Still birthdays can be such an abstract concept for him to understand.  We’ll read the book, talk about Elfee and birthdays. It all helps to connect the dots.

Communication & Storytelling. While counting down, talk about the days of week, talk about the months and other family member birthdays. Talk about your pregnancy and how excited you were the days leading up to your child’s birth. Talk to them about the day they were born – even if you think they won’t understand. Let them hear the story.

Feel Special on Their Day. I love the idea of the Birthday Chair Decorating Kit along with the Elf because it really makes a kid feel special. We don’t have big birthday parties for Norrin and I’m not the mom to go crazy with decorations. The Birthday Chair Decorating Kit is easy and fun. It’ll be nice that we can do something a little extra to celebrate.    

Catch up with last week’s post: Prompting Conversation and Communication With An Autistic Child

And from my other blog:

 

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Prompting Conversation And Communication With An Autistic Child

Thursday, August 28th, 2014

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

My son, Norrin, has been working with a speech therapist for the last six years – ever since his autism diagnosis. At the time he was diagnosed, he had no language or communication skills. Recently, Norrin saw a picture of me that prompted him to ask me 5 appropriate questions in a row. I was beyond excited! Since then, I’ve been finding ways to build on his conversation skills.

Linda M. Reinert, speech language pathologist and author of Talking Is Hard for Me! Encouraging Communication in Children with Speech-Language Difficulties, encourages parents, teachers and caregivers to “expect communication.”

Tempting as it might be, stop trying to read the child’s mind. Consider what the next level of communication might be and expect that…expect the child to respond in a way that just a bit more difficult than [his or] her current means of communication.

I always try to keep that in mind when I talk to Norrin. He’s been much more expressive and so now I expect a little more each time we talk.

Here are my 6 simple rules for prompting conversation with my son:

Set the mood. Make sure your child is relaxed and ready to talk. Turn off all distractions so they can focus on you. And give yourself at least 10 – 15 minutes to commit to giving them your full attention. Go for a walk in the neighborhood and talk about what you see. Sit at the table while they are having an afternoon snack. I like talking to Norrin right before bed. He’s had his bath, he’s winding down and open to talking.

Keep it simple and specific. Don’t go into a whole monologue and/or fire off a bunch of questions. Use simple language and ask them one specific question at a time.

Follow up. Conversations are all about the follow up question. Build your conversation based on the answers your child provides.

Be patient and wait for response. Some kids need a few minutes to digest the question and think about the answer. So wait a minute or two.

Repeat and/or rephrase the question. If you’ve asked a question and too much time has passed. Ask again. If you have to ask a third time, rephrase the question. If they need help, provide two choices or use pictures and have them point.

Look for inspiration. There is inspiration everywhere. Show them a picture of something fun you did together and ask your child about it. Sometimes I’ll point out something as we’re walking around the neighborhood and ask him to tell me about the specific object.

It really doesn’t matter what you talk to your child about. The important thing is to take the time to talk to your child and get them into a back and forth dialogue. And with each conversation, always expect a little bit more.

And from my other blog:

Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills

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