Posts Tagged ‘ National Autism Awareness Month ’

Spreading Awareness, Acceptance and Making an Autism Fashion Statement

Wednesday, April 23rd, 2014

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

Over the weekend I attended an Art for Autism Fundraiser and I got to meet Nell Escalante for the very first time. Nell is an art/museum educator, DIY fashion redesigner, blogger and an autism mom. Both of Nell’s sons – ages 11 and 7 – have autism and are “on opposite ends of the spectrum.” Nell’s older son is “high-functioning practically Aspergers” while her younger son is “non-verbal, super active [and has] sensory issues.”

Nell and I have been on line friends for a few years and I wanted to support her as well as the other local Bronx artists. She donated three of her designs (see above) to the fundraiser. Nell’s “If They’re Gonna Stare” collection was inspired by her younger son. “I get a lot of stares when I’m with [him]…so I figure, if they’re going to stare might as well make it worth their while and look good,” she said.

But Nell didn’t always combine fashion with personal experience. When she initially set up her Etsy shop and blog back in 2008, she admitted to being “overwhelmed with autism talk and needed a space to be just Nellie.” While she never hid her sons autism, Nell knew she didn’t want autism to be “at the forefront of [her] blog.” Among her friends, Nell was known as “the Autism Mom” and felt like she was losing her identity.

“I wanted [my] blog and my shop to give me a voice. The voice of a woman, an activist, a lover of fashion, a creative being, a designer, a mom. But not an autism mom.”

After a few years, Nell realized that her journey was important and that being an autism mom was as much of her identity as everything else. It was through art and pursuing her own passions that Nell was able to come to this awakening. And now she encourages other mothers to continuing doing what they love to do because it will be thing that gets you through.

“When I went back to art…I became a better mom, a happier mom. Art saved my life. You don’t have to be a martyr to be a good mom. Autism is transformational, if you let it, it can make you better, not bitter.”

 

From my other blog:

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Best Kept Secret: When Kids With Autism Grow Up And Age Out

Wednesday, April 9th, 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, is eight years old and I try my best to focus on where he is now rather than worry about the future. But if it’s one thing I’ve learned about motherhood is that the years fly by. Eventually Norrin will age out and the special education “safety net” will be lifted. I feel lucky that Norrin’s school goes up to 21 years old but then what? Will he be able to get a job or live independently? Will he have the tools to face the world as an autistic young man?

Those are the questions the critically acclaimed documentary, Best Kept Secret tackles.

At JFK High School, located in the midst of a run-down area in Newark, New Jersey’s largest city, administrators answer the phone by saying, “You’ve reached John F. Kennedy High School, Newark’s Best Kept Secret.” And indeed, it is. JFK is a school for all types of students with special education needs, ranging from those on the autism spectrum to those with multiple disabilities.

Janet Mino has taught her class of six young autistic men for 4 years. They must graduate from JFK in the spring of 2012. The clock is ticking to find them a place in the adult world – a job or rare placement in a recreational center – so they do not end up where their predecessors have, sitting at home, institutionalized, or on the streets.

Last night I had the opportunity to hear Janet Mino speak at an autism parents support group. I was inspired by her devotion and wished that there were more educators with her mindset. One of the things she said that really resonated with me was about communication. Everyone can communicate, even if they are non-verbal – their behaviors are how they communicate. We have to take the time and figure out what they are trying to say. A tough love kind of teacher, Mino strives to teach her students to live without being prompt dependent, urging parents and caregivers to do the same. “It’s a harsh world. We must prepare our kids to face it.”

It’s autism awareness month and magazines and media share the stories of children with autism. Like any other kid, children with autism grow up. Services and resources are critical at every age but as autistic individuals grow up, the resources and services dwindle down; options are extremely limited. Those are the stories that need to be heard too.  In a interview with Kpana Kpoto, Mino advises, “Even after 21, still find ways to build them up. They need support. Plan early.  In order for parents to plan early, we need to be prepared and know what to plan for. Best Kept Secret sheds light on the things parents need to know. It’s a must see for any parent or caregiver of an autistic child and for teachers wanting to better communicate with their special needs students.

Have you seen Best Kept Secret yet? If not, it’s available for download on iTunes (for personal use) and on the Academic Video Store (for educational use).

From my other blog:

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Not So Different: A New Anthem for Autism

Wednesday, April 2nd, 2014

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

Today is World Autism Awareness Day and what better way to convey a powerful message of awareness and hope than through song. That is exactly what Cassandra Kubinski’s song, “Not So Different” does – a song written to “foster acceptance and understanding.” When Kubinski was approached by her friend, Vanessa Ticona – the mother of two autistic sons, and asked to write a song for an autism charity walk, Kubinski agreed “knowing it was a way to use the healing power of music to contribute to the cause.”

Unfamiliar with autism Kubinski drew inspiration for the lyrics from an aunt with whom she shared an emotional connection. Kubinski’s aunt had an intellectual disability. “My aunt had these interesting quirks,” said Kubinski. “As a writer, it was important that the words made sense to people within the community.” And so, in addition to writing from personal experience, Kubinski spoke at length with autism parents – including her friend, Vanessa. The more Kubinski learned, she was able to see the parallels between her aunt and autism. While each parents experience was different, “the common factor,” Kubinski learned was that each parent spoke of their child’s unique “way to express themselves.”

“Not So Different” will resonate with autism parents and educators. And it’s a song easy for enough for children with autism to sing and embrace as their own personal anthem.

However, “Not So Different” isn’t just a song exclusive to the autism community, Kubinski hopes the message will make a much bigger impact as “…it’s about understanding that everyone wants the same things: to love and be loved without being judged or changed.”

“Not So Different” is available for download here, sales will benefit autism organizations.

Cassandra Kubinski, singer/song writer “Not So Different”

For more on Cassandra Kubinski’s and my thoughts on “Not So Different” – check out the latest post on my blog: An Inspiring Song by Cassandra Kubinski to Raise Autism Awareness

 Find cool activities to beat boredom here.

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

Other autism related posts on Atypical Familia:

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Autism Chat with Experts (a recap)

Wednesday, April 10th, 2013

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

Last Wednesday Parents and Easter Seals hosted an autism-themed chat on the Parents Facebook page.

I was excited to be one of the hosts along with developmental-behavioral pediatrician Georgina Peacock, M.D., MPH of the  CDC and board certified behavior analyst Patricia Wright, Ph.D., MPH of Easter Seals. During our one-hour chat, we discussed the early signs of autism, treatment options and services, and I shared my own personal experiences parenting an autistic child. And readers participate by asking questions.
In case you missed the chat, I thought I’d give you a brief recap of commonly asked questions.
What was your first reaction when you received your son’s autism diagnosis?
I had prepared myself for Norrin to be diagnosed with autism. Throughout the evaluation process, I was reading and researching. But still hearing it from the doctor was still heartbreaking. It’s not the thing parents expect. But I knew I couldn’t allow myself to be sad for too long. Norrin needed me. (Lisa, AutismWonderland)
What are signs of autism?

Parents can use CDC’s “Learn the Signs. Act Early.” tools to check their child’s development - http://go.usa.gov/yVm.  Every child is different & develops at his/her own pace, but by learning the milestones, parents can recognize if their child has a developmental delay. If you have concerns talk to your child’s doctor.  (Dr. Peacock, CDC)

What is the first piece of advice you would give parents after their child is diagnosed with autism?

Build a community of support and gather quality information to inform your child’s treatment. Personally connect with those available to offer YOU support (family, friends, faith community). Share news of the diagnosis and let them support you. Gather information and immediately get your child enrolled in quality treatment. There is a lot of misinformation out there about autism – use quality sources for information gathering. The CDC (www.cdc.gov/ncbddd/autism/index.html), the Association for Science in Autism Treatment (www.asatonline.org/) and the American Academy of Pediatrics (www.aap.org) are great places to start learning about quality treatment for your child. (Dr. Wright, Easter Seals)

How do you explain autism on a child’s level?

Don’t make it complicated or over whelming. There’s a great book called “My friend with Autism” by Beverly Bishop – It’s perfect to help kids understand autism. (Lisa, AutismWonderland)

While the chat made me realize that people are aware of and curious about autism, there is still so much unknown. I was really inspired by many of the questions parents asked me – questions that deserve more than one or two line answers. Over the next few weeks, I plan on answering some questions (in greater detail) about our experiences with potty training, school advocacy and socialization. So please check back here or my Facebook page (AutismWonderland) and look for them.

And if you have a question about autism, that you’d like me to answer – please feel free to leave it in the comment section!

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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 chatWe’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:

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