Archive for the ‘ Children With Special Needs ’ Category

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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7 Things My Kid With Down Syndrome Does That I Never Could

Friday, March 21st, 2014

This guest post in honor of World Down Syndrome Day is from Kari Wagner-Peck, mom to Thorin. Keri is an awesome writer and advocate who blogs at Atypical Son, and her post It’s an amazing reminder about all the abilities children with special needs have. 

Kari and Thorin

I often say to my son “I could have never done that at your age!”

I’m not saying it to make him feel better about having Down syndrome. I am also not saying it because I can’t believe someone with Down syndrome can do those things. I am saying it because it’s true. Thorin is more advanced in many ways than I was at the same age. My 82 year-old mother a.k.a Bubba to our son can attest to my earlier life challenges.

In no particular order the following are skills my seven year old son possesses that I did not at his age:

1. He is comfortable in large groups.

Thorin attends our city’s recreation program at his elementary school after class three days a week. In attendance are upwards of 50 kids between 5 and 10 years of age. It is loud, chaotic—and, there are 50 kids! He loves it. At pick up he is mostly found in some melee of a game in the gym. He pleads to stay when either of us arrive. He is there to have fun and he does. I could not do that with 50 adults today.

2. He is an enthusiastic volunteer.

Thorin started dusting at three. I have no idea where he saw that particular behavior but he did see a job that needed to be done. He cleans his own room and takes his laundry to the hamper. My husband, on the other hand, leaves a trail of clothes throughout our apartment that starts at the front door.

Our son offers to help at the grocery store and puts away the groceries. He insists on holding Coco-the-mini-dachshund’s lease on walks. One of his most frequently used sentence, “I want to help!”

My mother has assured me I volunteered to do nothing that might have assisted her—a working mother in a household of six people.

3. He is an accomplished self-advocate.

Our son had to tell me to stop walking him into school at morning drop off. It took me longer than it should have to let go of that duty but he was patient with me. I was sort of a clingy kid.

Thorin had me tell the school he wanted to go to the bathroom alone. No standing outside the door waiting for him anymore. He has also made it clear at school to other students he does not like to be patted on the head, picked up, hugged without permission or helped unless he asks.

4. He possesses social grace.

Thorin’s eating habits at snack time in his classroom have been described by staff as sophisticated. He sets up his desk with his preferred menu of hummus, crackers and juice sitting with his legs crossed and eats with his pinky extended.  It can take upwards of 45 minutes to finish eating. The school had initially been “accommodating” him for what they perceived as a developmental delay in eating habits until they realized as we had at home he favors a leisurely European style of dining.

Thorin sets the table at home insisting on using matching place mats and cloth napkins. This includes the nights we sit in front of the TV to eat. Growing up we used cloth table settings three times a year and I had no idea where we kept them. They just appeared.

I still get a little nervous at “fancy” restaurants.

5. He is a committed student.

Our son works harder than any typically developing peer in his school period.  Aside from time in a regular classroom he sees a speech therapist, an occupational therapist and a physical therapist. He also attends speech therapy outside of school twice a week.

At night and in the morning before schools he does his assigned homework plus the additional writing, vocabulary, reading and math necessary to retain information. He is also learning a new augmented communication device that has been described by all staff as “cumbersome and difficult.” When I asked our son how it was going his eyes filled with tears.

What I remember best about first grade is how much I liked the word “cake.”

Sometimes I think even people who know him best do not realize how hard he works. Often he gets educational toys as birthday and Christmas gifts. It reminds me of the year one of my Valentine’s Day gifts from my husband was a steam iron. I had to break it to him that particular gift made him appear not very romantic, and the lack of an iron is not what got in the way of me ironing.

6. He is a gifted photographer.

Thorin started taking photographs without us knowing. We didn’t realize his iPad had a camera until I discovered about twenty selfies, a photo of a box of Life cereal (his favorite) and one of Walt-the-German-Shepherd. Since then he has taken hundreds of photos including three different self-portrait series.

A photo he took at a local county fair where we live in Maine

His photographs have a distinct point of view. These are intentional images. He takes a photograph and assesses it. If he is satisfied he moves on. If he does not like it he re-takes the image until he is. Some of his photos were displayed in an exhibit case in the front hall of his school. He also had three photos published in the school journal.

7. He has high self-esteem in spite of how he has been treated.

Thorin has been teased and mocked by other children. He has been treated not only in a shabby manner by a few staff members throughout his education so far but in a down right demeaning manner. He has been pitied, which he can discern uniformly by children and adults alike. He describes the looks he gets as “mean.”

In spite of how others perceive him, Thorin likes himself very much. He exudes confidence. How long can he be expected not to internalize the puny view some people have of his Down syndrome? The fear my husband and I have is that the world will extinguish that spark.

In reading over this I realized not only could I have not done these things our son takes for granted many of them I never had to even consider.

Follow Kari on Twitter @typicalson

 

From my other blog:

20 reasons to respect my child with special needs

 

Images courtesy of Kari Wagner-Peck

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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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