Archive for the ‘ Disability ’ Category

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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From Special Education Teacher to Autism Mom Blogger

Wednesday, August 20th, 2014

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

When Norrin was first diagnosed with autism, I didn’t know anything about the diagnosis or navigating the special needs system. I was able to talk to friend of a friend who was a speech therapist. She provided the emotional support I needed and helped me better understand the process. A few years later, her son was diagnosed with autism. She called me up crying and I gave her the support she needed.

Being a special education professional doesn’t always make the diagnosis easier to accept or understand.

No one knows that better than Mama Fry who writes the blog Autism with a Side of Fries.Written with honesty and humor, Mama Fry doesn’t pretend she knows all the answers – even though she once worked in special education. She even wrote a post about her experience sitting on the other side of the IEP table.

Earlier this month, I got to ask Mama Fry a few questions:

What did you know/think about autism when you were a special education teacher?

Not nearly enough. I haven’t been in a classroom for about 9 years now and much has changed. Back then it was more about getting kids to be all the same or “normal” rather than celebrating and tapping into their skill sets.

How did you advise autism/special needs parents?

My area was vocational training. I was thinking past school. Getting them ready for what real life job situations might happen. Most of my conversations with parents then was problem solving behaviors or trying to figure out accommodations that would suit their kid best.

What was it like when your son was diagnosed?

Surreal. It absolutely never occurred to me that he might have autism. I thought it was a speech delay and that’s it.  I was truly gobsmacked. I had recently stopped working outside the home because working with autism was burning me out. Surprise! It came to live with me instead.

How have you changed since? 

I understand how each kid is just so different. My son is not just a name on a page to me. He’s my heart.  I can’t punch out at the end of a shift. Behaviors are communication not just non compliance.

What advice would you give to special ed teachers who don’t have special needs kids?

Ask about what’s going on at home. Sleep is a huge factor. Eating too. Realize the student you have, their behaviors could be based on those two things a lot.  Ask what concerns the parents the most. Share what’s working in class.

Catch up with my last post: A Little Girl Gets a Second Chance at Childhood

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

And from my other blog:

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A Rodeo Queen Whose Cerebral Palsy Doesn’t Matter

Tuesday, August 19th, 2014

The bio for 2014 Eastern Colorado Roundup Queen Skyler Baker reads like one for any teen who’s a ring master: Skyler Baker has been rodeo-ing since age three. The 16-year-old enjoys traveling to shows and meeting new people. She’s learning how to rope. She has a 3.6 GPA. She’s enjoyed representing Colorado as Queen; she’s learned that children look up to her, and that it’s important to be the best she can be to set a positive example.

What her bio doesn’t mention: that she has cerebral palsy. And I loved that, more so than reading about how her town says there’s no one better to represent their “grit.”

Too often, the press plays up the accomplishments of people with disability as inspirational or who, as the caption on a video about Skyler notes, “show what tough really is.” To be sure, parents like me who have children with cerebral palsy admire the accomplishments of adults with CP because we hope our children grow up to achieve their own maximum potential. To be sure, kids like Max have to work harder at doing stuff. Yet in general, the portrayal of people with disabilities as being exceptional because of their abilities does them an injustice. They may have challenges to overcome, but like anyone they have their own special talents and, as in Skyler’s case, athletic abilities. Skyler is an amazing equestrian, period, cerebral palsy or not.

As Skyler says, “I don’t feel different. I’m unique, just like everyone else.”

This cowgirl’s cerebral palsy does not define her. If only more people thought of kids and adults with disabilities that way.

Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs

From my other blog:

The paradox of disability inspiration and may I admire you, please?

On letting kids with special needs learn how to do things their own way

That sad you feel when you think about your pregnancy

Image: Screen grab, KMGH video

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Can We Change The Way Society Thinks About Disability?

Thursday, August 14th, 2014

Yesterday, I read an article about a PhD candidate in New Zealand who will be looking into changing the way society thinks about disability. Titled “Reimagining Disability,” the research will explore disability pride and ableism (discrimination in favor of  ”able-bodied” people) through a group of intellectually disabled adults.

“Having a disability is largely viewed as having a problem, when it shouldn’t be,” says Ingrid Jones. “It’s just part of the diversity of humanity. The reason we have disability oppression is because society views disability as a problem. Being ‘able’ is seen as the norm, when society is more diverse than that.”

All I could think was, AMEN. 

To me, it didn’t matter that her research is taking place across the world, because the challenges people with disability face seem to be similar everywhere. It’s more intense in some places, of course; there are developing nations where children with special needs are kept hidden away in homes, and may be considered a “curse.” But the commonality all countries share, sadly, is that people with disabilities are often seen as defective, lesser human beings.

I know this firsthand from raising Max. He’s a super-cute kid (if I do say so myself), and a charming, happy one at that. Bright, too. But there have been many times in his life when people have expressed pity about him, because of his cerebral palsy. Or excluded him from programs. Or have only been able to see his disabilities, not his abilities (or possibilities).

Max’s biggest challenges aren’t the ones caused by his cerebral palsy—they’re the perceptions people have of him.

As disheartening as this can be, I have hope. Through blogging and social media, many parents are showing the world just how much our kids rock. We’re asking for people to respect our children, both in their language and in their attitudes. We’re pushing for inclusion, in school and out, as a growing number of programs and events crop up that offer the same. More and more nonprofits are spreading the good word, like AbilityPath and Easter Seals.Many states, along with the Supreme Court, have chosen to use the term “intellectual disability” in laws over the now defunct term “mental retardation.” Meanwhile, technology like speech apps are enabling our kids to better interact with the world.

It’s going to be a long haul. But research bit by bit, program by program, idea by idea, people can find ways to help society welcome and include those with disability. Person by person, parents can change minds, and help give our kids a better chance at being seen as equals in society.

It takes a village to raise a child, yes—but it also takes a village to cultivate respect for a child with special needs.

From my other blog:

Would you call my child a retard?

My kid with special needs understands you so don’t ask me, ask him

Max takes a walk I will never forget

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