Archive for the ‘ Must Read ’ Category

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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5 Key Tips For Finding A Camp For A Child With Special Needs

Tuesday, March 25th, 2014

With spring coming around, a lot of us are thinking about summer plans—and maybe, just maybe, finding a camp for our kids. It can seem like a daunting task if you have a child with special needs, but these days, having a developmental, medical, social, emotional or learning disability or even a severe food allergy is no longer a roadblock for a camp experience. In fact, according to the American Camping Association, each year more than a million special needs children head to summer camp.

“For children with special needs, summer camp is an incredible opportunity to build self-esteem, self-confidence, social skills, independence and lifelong friendships,” says Susan Kasnett. She’s founder of Summer 365, a free, year-round camp advisory service for parents and families that she runs with her daughter, Lauren. I tapped them for tips on finding the right camp for your child. Their advice applies whether you’re sending your child to sleepaway or day camp…or you’re just in the “maybe” stage.

1. Realize that one camp doesn’t fit all

“Many camps for kids with special needs tend to have a focus; some cater to children with cognitive conditions, others to those with more physical challenges. A quick search online will indicate the camp’s particular niche and expertise. There are also a growing number of mainstream camps that integrate campers with special needs depending on the nature of their need and the camp’s resources. For example, we worked with one mom whose son had ADHD and learning disabilities and required medication everyday. The school year was very regimented so she wanted the summer to be an opportunity to break away from academics and for him just to have fun and improve his social skills. Her son loved music, cooking and science so we found a sleepaway camp that had individualized programming, allowing him to focus on the activities he was interested in (and avoid sports) but in a structured environment. From the onset of your search, it is important to think about what you want your child to get out of the experience.”

2. Check it out

“It’s ideal to visit a camp while it is in session, the year before you plan to send your child. That way, you can see camp and the campers in action, tour the facilities, and speak to staff and ask questions in person. There is no better way to get a feel for the camp’s culture and philosophy. But rest assured, if you’re looking to send a child to a camp this summer, a call, home visit or video chat with the director or a staff member is a great alternative. Additionally, speaking to references is a valuable tool to learn about other children’s firsthand experiences. Camps happily connect prospective families with current families at the camp.”

3. Be totally open about your child

“It is important to have an honest conversation with a camp director about your child’s unique needs and background in order for both sides to make a well-informed decision. While you may hesitate to reveal that, say, your child has bedtime meltdowns where he screams and hits, you wouldn’t want your child to wind up at a camp that’s not equipped to handle him. To prevent heartache and set your child up for success, it’s best to be an open book.”

4.  Ask the right questions

Key ones you want to run by the camp directors:

  • What is your camper-to-counselor ratio
  • Is your camp licensed and accredited?
  • How are counselors selected and trained?
  • Who is on your medical staff and what are your medical facilities like?
  • What accommodations or equipment exist for special needs campers?
  • Is there any therapy programming offered?
  • How do you handle homesickness?
  • Have past campers been eligible for Extended School Year Funding or insurance reimbursement?

Equally as important as the questions you ask the camp are the questions they ask about your child. Many camps interview their prospective families to get a comprehensive understanding of each child to make sure their needs and interests are met. This may include parent and child input, school IEPs and medical records. This is a good indicator a camp is well versed in accommodating different child’s needs.

5.  Now, everyone enjoy!

You may feel more anxious than your child about sending him to camp but that’s completely normal. Think back to your own camp experiences, and consider the incredible gift you are giving him. Summer camp is a magical place where the pressures of the outside world are shelved and your child will be given the freedom to grow, learn and thrive in a safe environment. How great is that?

Summer 365 is also an online destination for information, tips and trends that prepare, educate and celebrate a range of child and teen summer experiences. 

From my other blog: 

Music therapy for kids with special needs

The shocking thing Max remembered

20 reasons to respect my child with special needs

Image of child on swing at camp via Shutterstock 

Find fun activities for your kids at home.

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

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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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