Posts Tagged ‘ autism ’

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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How To Help Your Child With Separation Anxiety

Wednesday, March 26th, 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).

My son, Norrin, is eight years old and has autism. When he was a baby, he had no problem when I left him with the babysitter so I could go to work. Even as a toddler, the first time I put him on the little yellow school bus – he didn’t cry. And while it hurt to think Norrin didn’t care leaving me, it would have felt so much worse if he had. But over the last year or so Norrin has had difficulty when we separate. That’s the mother and son phase we’re in now.

It’s tough seeing my son in distress every time I walk out the door or have to leave on a trip. Here are 8 things I’ve been doing to ease his anxiety.

Mark it on a calendar. We talk about the days of the week and the months on a daily basis. During the times when I travel, I print out a separate calendar and mark the day I leave and when I return. While I’m away, my husband, Joseph, goes over the calendar with Norrin. I also communicate with his teacher so they can do the same, if Norrin becomes upset during class.

Map it. Last year, I went to California and before I left, I picked up a puzzle map of the United States. I showed Norrin where we lived and then showed him where I was going. Not only does the map help Norrin with the States, but it gives him a sense of where we are.

Show them where you work. Norrin has been to my office several times and he likes being there. And I’ve also taken Norrin to his dad’s job. Norrin knows where we work – it’s not some imaginary place. When we tell Norrin that we’re at work, he knows exactly where we are. I think knowing creates a sense of security.

Create a visual schedule. Many children with autism respond well with visual schedules. They like to know what’s next. By creating a visual schedule, you can let your child know when they can anticipate seeing you again. AutisMate is a great app that allows you to create a personalized schedule.

Time. We talk about time a lot. While Norrin doesn’t understand the concept of telling time – we tell him what time we’re doing things. We show him the time on the clock. On nights when I work late, Joseph tells Norrin what time I will be home.

Make time for Face Time. Modern technology helps families stay connected. When I’m away, I schedule a time to Face Time with Norrin. He doesn’t stay on for long but he gets happy seeing me.

A pictures speaks a thousand words. In the digital age, photos feel like a thing of the past. But I keep family photos in Norrin’s room so that he sees us. Sometimes a picture in your child’s pocket can be the comfort that they need.

Promise a special treat. Whenever I travel, I always promise to bring a little gift back for Norrin. Nothing extravagant – even a peace of candy will make him happy.

Does your child experience separation anxiety? What do you do to help them work through it?

Plus: Find cool activities to keep your kiddo occupied while you’re away.

Living Life with Sensory Issues
Living Life with Sensory Issues
Living Life with Sensory Issues

From my other blog:

 

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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

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The Importance of Playdates and Kids with Autism

Wednesday, March 12th, 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).

My son, Norrin, playing with his friend, Dylan.

“Play is often talked about as if it were a relief from serious learning. But for children play is serious learning. Play is really the work of childhood.” -  Fred Rogers

When my son, Norrin, was first diagnosed with autism he had no appropriate play skills. He didn’t even have much interest in playing with other children. Norrin was content playing by himself. I never pushed playdates because our schedules consisted of work, school and therapy. Most of the other special needs parents I know juggle the same kind of schedule. So working on socialization and playdates with peers wasn’t a priority for us especially since we knew it was being done at school.

A few weeks ago, I hosted a party and invited a few moms with their children. It was our first party in years. And it was the first time I had other kids with autism in our home. Unsure of how to host while entertaining children, I asked our ABA therapist if she could help out for a few hours.

I’ve seen Norrin at the playground. Sometimes he’ll run around with another kid but it’s never for more than ten minutes. I’ve seen him in school sitting beside a classmate but not really engaging. Watching Norrin interact with kids  in his own environment was eye opening for me. Norrin was talking and sharing and wanting to play with the other kids. He even read his guests a story.

At eight years old, Norrin is finally ready for playdates. And since our little party, he’s been asking for all his friends to come over and play.

I’m no longer tied to mainstream dreams. I just want Norrin to be happy and be as independent as he can. I also want him to have at least one friend. A friendship will never form unless I start cultivating the value and meaning of a friend now.

A few weeks ago I shared that I was ready to start cutting back on our therapy. I’ve spent the last five years focusing on all the skills I thought were more important, always putting socialization on the back burner. It’s time to take play seriously.

Do your children have regular playdates?

 

Have you heard about my #EverydayAutism Photo-a-day Challenge - go check it out on Instagram!

 

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