Archive for the ‘ Down Syndrome ’ 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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Special Needs Families: Celebrate National Let’s Go Out Day

Thursday, March 27th, 2014

In honor of Developmental Disabilities Awareness Month, there is one key thing you can do: Take your family to the park. Or for fro-yo. Or to the zoo. Or to any public place! The Arc has planned its first Let’s Go Out! day for Saturday, March 29, to raise awareness about kids and adults with disabilities. As they say, “This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage people without disabilities to recognize that we’re not so different after all.”

The Arc is the leading and largest organization for people with intellectual and developmental disabilities (I/DD) in the U.S. Working through a national network of 700 chapters, The Arc advocates for and serves more than 1.4 million people with I/DD and their families with more than 100 different diagnoses and across their lifetimes. I got a chance to ask Laurie Edson, The Arc’s Director of Chapter Excellence, some questions.

How did The Arc come up with Let’s Go Out Day?

Each year, The Arc celebrates Developmental Disabilities Awareness Month. This year, the theme—“Let’s Go Out”—is a simple yet very powerful idea that one of our young professional staff members who has a sister with a developmental disability came up with.  The idea reflects the desires of most families—to just be out and about and experience life in their community! However, some families feel restricted because they have anxiety about what other people who don’t have any experience with people with I/DD will think.

What sort of misconceptions do people have about kids with developmental disabilities? 

In my opinion, the most common misconception is that kids (or adults) with DD are going to struggle throughout their lives, that they can’t necessarily enjoy the same things as kids without disabilities. Or, can’t understand what’s going on around them. People are uncomfortable with the unknown.  We are genetically wired that way, I think.

Many years ago at the age of 24, I had the life changing opportunity to walk in the shoes of parents who are raising kids with disabilities.  For five years, I lived and worked in a home where five young teenagers with Down syndrome and Fragile X syndrome made an impact on our neighbors and community.  Typical home, typical neighborhood and while we weren’t exactly typical—we sure lived life fully with our neighbors! Because we played outside with the other kids, because we attended neighborhood potluck suppers, and did what any other neighbors would do, those families came to embrace our novelty and yes… we knocked on each other’s doors to borrow a cup of sugar.

Obviously, one day alone won’t change mindsets, so please clarify what The Arc is hoping to accomplish with this day.

We want to plant a seed. We want to make people stop, think, and take notice of their neighbors. By encouraging people— families and individuals— to go out and do the things that make them happy and feel alive. We hope that fostering this active participation in our communities will start a chain reaction and shift attitudes… and change those misconceptions.

What specific challenges have you noticed that families of kids with DD face in terms of going out?  

I suppose it’s that having a child with a developmental disability can take a lot of spontaneity out of life.  It just seems to take more planning and more logistics to do even the simplest things like going to the grocery store or to go to a birthday party.  And while most families slide into a comfortable pattern once kids get to be around school age, it isn’t uncommon for families who have a child with a developmental disability to have to strain their eyes to see the light at the end of the tunnel.

In terms of going out, a specific challenge can be a situation arising, sometimes with no perceptible warning, which to a stranger’s eye might seem overblown and uncomfortable. My own children grew up around people with DD. Here’s an example of how creativity and flexibility saved the day on a routine trip to Target.  My teenage daughter and her friend (with I/DD) went with me to run errands. They went off on their own to try on fleece pajama bottoms and my daughter’s friend promptly decided she simply wasn’t going to take off the pants. After much prodding, my daughter realized she would need to be a little more creative to mitigate the situation. Knowing her friend as well as she did, she knew that she had a trump card—her friend’s undying love of footwear. “Well, we can’t go to the shoe section until you’ve put your own pants back on…” she said. Her friend hopped up, changed her pants, and they went on their merry way. Mission accomplished! It’s about having the patience to get to know someone well enough. It’s the same principle as coping with a disagreement or issue with a co-worker, a roommate, or any other friend or family member. It just gets a little more public attention sometimes.

Sometimes, it’s not even a specific situation, but the stares and sideways glances from uninformed people that can be intimidating. Those are some of the kinds of challenges that may make it difficult to go out and easier to just stay home.

What advice do you have for these families to make going out easier?

Go with a sense of adventure! Expect that it will take a bit more time and you will need to take a few breaks to accommodate for “moods” when everyone needs to regroup. And, most importantly, have fun and then when you know you’ve reached your limit… smile and head back home.

And what advice do you have about dealing with people’s stares? 

Smile back! There is a very real chance that they are curious in a genuine way and your smile might redirect the tension towards an opportunity for understanding. It works. And can I add that on the flip side, when I spot a parent with a child with an obvious developmental disability I make a point to make eye contact and share some friendly little comment like “your daughter’s smile is beautiful.” That small gesture can make a parent feel so good.

What other advice do you have for parents about educating strangers? It can be a real challenge.

When I have been in this situation, I assume that children innately want to understand the world around them. As the parent/adult you can be open and say something as simple as “Hi, this is my son Jeffrey and he uses a wheelchair because his legs are not strong enough for him to walk… but he loves to listen to music and sing.  What kind of music do you like?” Then you’ve started a dialogue… And, if the inquisitive kid’s parent seems horrified and tries to apologize, I think it’s best to continue on with “I understand that people are curious about my son, but I’d like them to know that he is a fun and loveable guy so it’s great to get the opportunity to introduce him.” Again, you’ve opened the door to create understanding.

The same goes for adults. They may not even realize they’re staring! But by being open and taking some time to engage them you may have opened that door. And then maybe they’ll pass that on to their children, their friends… It’s all cycles.

Are you recommending that parents make a point of explaining the day to their kids with I/DD, or should it just be a family outing?

We are putting the emphasis on being a family or being your own individual self if you are an adult going out without your family. Celebrate your family’s unique qualities and just go out and have fun. We think that just the presence of people with different challenges out doing the same things people without disabilities are doing on a particular Saturday will make people stop to think that maybe we’re all not so different from each other after all. Our hope is that without much fan fare and attention, people will just happen to notice and maybe appreciate all the diversity in our communities.

From my other blog:

 

Image of girl on street having fun via Shutterstock 

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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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