New Post by Our President - She Sauna'd!

Our President, Kim Mack Rosenberg, had the opportunity recently to try out the full-spectrum saunas made by Sunlighten, a sponsor of our national parent, the National Autism Association.  She blogged about it at her own blog - check it out!  Look for information about Sunlighten at the NAA Conference next week in St. Pete's Beach, Florida. The Conference is a great place to learn news on treatment options and other important information for those with autism.  Saunas are one option to help people detox and the full-spectrum saunas offer some unique benefits.  As an NAA sponsor, Sunlighten has special deals for NAA members too!  For those in the NY area, the Beach Bum Tanning locations in Chelsea, Forest Hills and Saddle Brook now have Sunlighten's full spectrum saunas that anyone 18+ can enjoy.  Kim shares her personal experience as well as information on the potential benefits of full-spectrum saunas for people with autism and generally for those looking to adopt healthier lifestyle choices.

NAA New York Metro Chapter Sponsors a Training Session for NYPD Officers

By Khalid Rehman, MD, Chairperson of the NAA NY Metro Advocacy Committee

For the first time in our 5 year history, NAA NY Metro has connected with the New York Police Department (NYPD) to help train police officers in Autism Recognition and Response.

Thanks to your generous donations, the training session - which was organized and paid for by the NAA NY Metro Chapter -was held on 25 January 2013 at the NYPD Academy. The audience included more than 300 police sergeants (command level officers) who will in turn train the rank & file police officers in every precinct of New York City. The attendees were provided with videos (DVD) and written material to be used in training the police officers. This was a successful culmination of an effort started by us few years ago.

As the number of individuals on the autism spectrum continues to rise, the likelihood that any one of them will encounter contact with law enforcement officials has increased. In a study published in 1993, it was reported that the people with autism (as well as those with developmental disabilities) were approximately seven times more likely to come in contact with police than the general public.

Since many individuals on the spectrum have difficulty obeying commands, making eye contact, are often non-verbal, resist being touched or man-handled and have other sensory and behavioral issues, it creates a challenge for the law enforcement officials to handle them. If the police officers and other first responders know how to recognize someone with autism and how to handle them, their job can be easier and safe.

The training was conducted by Dennis Debbaudt, an internationally recognized specialist in this field. Mr. Debbaudt, the father of a young man with autism, runs the Autism Risk & Safety Management Company. He is an author and public speaker and has conducted training of the first responders all over the United States, as well as in other countries.  He taught the attendees how to recognize someone with autism and made them aware of physical, emotional and cognitive issues that many people with autism face. With the use of videos, slides and his own body language, he taught them how to interview, investigate and apprehend (if necessary) in a safe and effective way.  He also talked about wandering and effective search and rescue efforts.

The NYPD also has developed its own video on autism, which was also shown at the training session. This video is available to the commanding officers for training purpose. It was also interesting to note that by show of hands, at least 15-20% of the audience indicated that they know of someone with autism among their family, friends or neighborhood.

 

The NY Metro Chapter is planning to enhance this experience of the NYPD officers by organizing a community day on 2 April 2013, the National and World Wide Autism Awareness day.  We are working with NYPD and its Community Affairs Division to host individuals with autism and their families at their respective police precincts on that day. This will allow the individuals on the spectrum to see and meet police officers in uniform while at the same time provide opportunity for the officers to get to know these individuals in their community.

The NY Metro Chapter is also considering asking the police academy to make this educational material a permanent part of the curriculum of the police cadets and also to sponsor such a training session every few years.

My Interview with Louise Weadock of WeeZee, The World of "Yes, I Can"

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Parents of young children with autism are often looking for ways to get their kids moving more. So many children on the autism spectrum don’t get enough physical activity, but it can also be challenging for parents to find appropriate physical activities that are sensitive to their children’s various sensory needs or that help integrate the senses of children with sensory integration disorder (SID).  As many of our families know from experience, children on the autism spectrum often have sensory integration challenges.  Moreover, many typically developing children also have sensory issues – ranging from mild to very severe. Particularly for families living in or near Chappaqua, NY – or those looking for a fun day out of the city – there is a new option for sensory appropriate fun and physical activity.

Recently, I had the pleasure of speaking with Louise Weadock, the Founder & CEO of WeeZee,the World of “Yes, I Can,” an 18,000 square foot health/fitness facility for children ages 12 months to 12 years and their families which opened in mid-2012 in Chappaqua, to learn more about her unique program and how she developed WeeZee.  NAA NYM is always excited to share new information with families and to give families a chance to see if a program might be a good fit for them and so I am excited to share what Louise and I chatted about right before the holidays.

At WeeZee, Louise and her staff offer a unique opportunity to families for play that incorporates learning, sensory sensitivity, and safety management.  She shared with me that children, both typical and special needs, participating at WeeZee are seeing improvements in social skills, athletic coordination and academics.  Moreover, while children with sensory issues in particular may benefit from the environment at WeeZee, typical children, including siblings can come enjoy the fun as well – creating an experience that siblings can share and in which they can relate with one another while just having fun.  Finding those experiences can be a difficult for families of children with autism or other challenges – creating such an environment is another added bonus of WeeZee.

WeeZee is Louise’s brainchild and she drew upon decades of personal and professional experience concerning the sensory needs of children in developing the facility.  She is a registered Child Psychiatric Nurse, graduate of Johns Hopkins School of Public Health and the owner of a well-established nursing and healthcare services company also located in Chappaqua.  In addition to her own knowledge and research, Louise worked with other professionals to help determine what “worked” and what didn’t in developing a facility for children to integrate their senses, to be active, and to play. 

With personal experiences as well, she recognizes how important sensory integration is to children – both typical and special needs.  We discussed that if a child’s sensory needs go unmet, a child may be prevented from meeting his full potential.  As she told me, if a child’s senses are not working well, she cannot store and appropriately apply the information that she is taking in from her environment, let alone to generalize that information to other environments and experiences.  As a parent of a child with sensory issues, her words rang true to me – meeting my son’s various sensory needs is very important to his academic and social/emotional progress and even he is recognizing those needs and working to self-regulate.  Louise also recognizes the importance of physical activity for all children as well as the basic, though often forgotten, fact that kids need to have fun and just be kids!  WeeZee was designed to address all these needs.  Too often even very young children today are sedentary.  They don’t think creatively as much as they should and they don’t move.  They lose muscle tone and flexibility.

WeeZee fills a niche largely unmet for today’s young children, especially children with sensory integration issues. WeeZee is not a therapeutic center and it is not meant to replace occupational therapy.   Instead, it offers a supportive fun environment that is complementary to therapeutic work done elsewhere. 

WeeZee is a fun spacious facility with room for children to move around while receiving the benefits of a sensory-friendly environment.  Equipment and spaces are coded (color and symbol, helpful for even the youngest visitors!) for different senses:  touch, sight, smell, taste, hearing, and self.  For gym members (which now comprise approximately 300 children – about half of whom are children with IEPs), WeeZee staff members develop an individualized sensory circuit of activities – sort of like circuit training but not just on a physical level.  Staff works with the parents to develop a sensory profile of each child, including using an objective sensory assessment as part of the profile, and then match equipment/exercises with the child’s sensory needs and physical abilities.  WeeZee staff seeks to balance challenging children in areas needing support as well as gaining cooperation and furthering self-confidence in areas in which the children have strengths.  Children can try out different pieces of equipment to see what they prefer, further fine-tuning their personalized circuit.  Moreover, children move at a pace that is comfortable for them.  WeeZee recognizes that children with autism and SID may need time to adapt to the new environment and new equipment and are sensitive to those needs.

WeeZee Staff is screened and well trained (taught about behavior management, neurophysical principles and other relevant areas).  Louise challenges the WeeZee staff to share ideas and think outside the box to continue to improve WeeZee and children’s experiences there but she says that a really special thing that each employee must bring to working with children at WeeZee is that you “have to have a heart to begin with.”  Staff is made up primarily of college graduates with group experience working with children and interests in fields such as healthcare, social work and education.

In addition to memberships, WeeZee also offers afterschool programs, birthday parties, classes and other activities.

In part to try to establish more formal data about the kinds of play activities that WeeZee offers, they have also launched a nonprofit called Sensory Bullets.  Sensory Bullets will aim to provide research grants, to provide training and education to families, caregivers and professionals working with children with ASD and SID, to provide academic, service or program scholarships to IEP students.  

Thanks to Louise for a great interview!

Kim Mack Rosenberg

Small Victories by Lena Rivkin, MFA

 NAA NY Metro is pleased to bring you "Small Victories," another piece by Lena Rivkin, sister to Phillip, an adult with autism.  In "Small Victories" Lena shares the healing power of art and shares with us some of the wonderful, supportive people surrounding Phillip.  Enjoy!

“Phillip made that!” I proudly exclaimed. Then I instantly wondered who exactly I had become. A friend had come over with her 5-month-old baby. After we cooed over her baby’s latest accomplishments, I suddenly pointed to a neon pink, incredibly long legged creation with green ears, round black eyes and a glittering necktie, taped to my refrigerator door.  I instantly worried aloud if I had just sounded too parental.  My friend reassured me. “You’re not just Phillip’s sister. You’re his parent as well. So why not be proud of his accomplishments!”  She’s right. I am proud. As an adult with severe autism, my brother Phillip doesn’t use words.  He speaks with his art.

My brother and I were equally lucky in different ways to have an artist for a mother.  Everything our mother did, she did with creativity and her own personal flair. Termed severely retarded at the age of three, my parents were told to expect nothing of Phillip, advised to put him in a mental hospital and to move on with their lives. Even though Phillip was born long before autism was considered common, my parents instinctively saw their son as more than just a dire diagnosis.  So they did just the opposite.

My mother and father were very involved and dedicated parents. They fully immersed him in their fun and busy lives. They were proud of everything he accomplished. After I was born, my parents skillfully raised me to know that my older brother was special and he was my family.

And throughout our childhoods, as entwined and yet indelibly different as they were, our common language was creativity. I grew up to be an artist and an art educator. Phillip grew up to be his best self, free to explore his creative voice in a secure and nurturing community. Every one of Phillip’s personal victories, however small, has been lauded and loved.

As Phillip grew, our parents not only were actively shaping Phillip’s life, they were also advocates for him and other children with special needs.  When it came time for our parents to seek additional outside help for Phillip they were lucky to discover New Horizons, a school and group home in North Hills, California, where Phillip could live his adult life with the utmost care and attention.

Far from being content with just that, our parents sought creative ways to raise funds and awareness for New Horizons.  They vibrantly applied their creativity and volunteering spirits to help New Horizons in any way they could. They were uncommon parents for their time.

New Horizons has been instrumental in Phillip’s adult victories. Due to his excellently performed job of crossing out every day on the calendar at New Horizons, we made sure he had plenty of colored pencils to fulfill what became an obsession. My family also learned he adored receiving mail so we made an extra effort to send him postcards, it didn’t matter where from.  When my parents passed away, I kept up the postcard sending.  Recently, I’ve been overwhelmed by the kindness of friends who send Phillip postcards.  Bierta, who lives in Japan, sent him a large box of teas and chocolates for the holidays last year as well as postcards from all her travels. Terry and Lee Gopadze inundated Phillip with postcards from their trip to Maui last year.  None of these people have even met Phillip, but they richly contribute to his life.

Since art was always my passion. I received my MFA and became an exhibiting artist and art professor at a local college.  Years ago a  staff member at Phillip’s school helped Phillip discover his “MFA”. A teacher whose name I wish I knew taught Phillip how to needlepoint.  It truly was the biggest creative victory in Phillip’s life. Phillip became a devoted needle-pointer over night.

Drawing upon her deeply creative instincts, my mother started designing and coloring Phillip’s needlepoint canvasses. Phillip’s fingers eagerly responded to our mother’s graphic designs and vibrant color choices. When our mother passed away six years ago, I took over the design and coloring of his canvasses. And now, nearly 20 years and around 100 needlepoints later, our collaborative creations have deepened and enriched our relationship, far beyond words. We also bake cupcakes together.

Phillip now also attends a wonderfully nurturing school, Tierra del Sol Foundation in Sunland, California. Through the art programs at Tierra del Sol, Phillip’s art has been exhibited and he actually received a commission for one of his paintings. So he is a working artist as well!  Having my brother enveloped in two thriving environments where he can communicate with his hands and mind is one of the best victories of his life.

Recently, Gail Peters, the development officer at Tierra del Sol told me a story I never knew.  Years ago a staff member sent my father a photo of Phillip smiling.  My father was stunned, because he had never seen Phillip smile.  He wrote a note to Gail thanking her for his son’s smile, which in turn made him smile in a way he had never smiled.

On the weekends, Ardith Green, a creative and devoted New Horizons staff member regularly brings in craft-making projects for Phillip and his housemates.  Our mother would have loved Ardith for her take-charge spirit and her artistic impulses on behalf of the clients at New Horizons.

On my most recent visit with Phillip, I was instantly charmed by the witty, long-limbed neon pink man on display in the living room. When Ardith exclaimed that Phillip had made it, I was delighted.  The neon pink man gave me a thrilling insight into what else lurks inside my brother’s imagination.

My parents aren’t around to enjoy what Phillip has recently created, but I’m sure they’d be exceedingly proud of everything he’s done. And they would joyfully display his creations for all the world to see. When I taped the pink man to my refrigerator, I honored my parents and their son, and furthered their belief that it is far better to celebrate what people can accomplish instead of mourning the milestones they may never meet.

Small victories are still victories.

Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Learn About and Join NAA NYM's Free Sibling Support Group

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NOTE:  Dr. Selma Miller is the moderator of our sibling support group.  Below she shares her personal story and the successes of our first series of sibling support group sessions last winter/spring.  We hope that if your ASD child has a typical sibling ages 8-13, that you consider having them attend our new series of support group, meeting twice a month, starting October 3.  Visit NAA NYM's website for more details.

Siblings and the NAA NYM Sibling Support Group

By Dr. Selma Miller

I am the younger sibling of an adult sister, now in her mid-80s, with autism.  Many years ago, my sister was diagnosed as mentally retarded, and it was only years later that she received an autism diagnosis.  In my experiences both as Frances’s sister and as a mental health professional, I have found very little information that addresses the effect on “typical” siblings of growing up in a family that includes a child with developmental or physical challenges.   However, a great deal of literature describes the effect on the entire family of having a person with an illness, psychological or physical. Just a few weeks ago, the New York Times had a feature article in the Science section on the strains of being a caretaker. Although the article focused on being the elderly partner of a person with dementia or Alzheimer’s, it also addressed the strain of all illnesses on caretakers and families in general.

And just as the literature focuses on families and caretakers, support groups are plentiful for adult caretakers but few groups exist for typical children in the home of a child with a disability. This focus may exist because adults who live with or care for family members with physical or developmental challenges are so overwhelmed that they have little time left to address the needs of other children and are grateful for fact that these children have no apparent pressing needs. The needs of the typical child are frequently compatible with the needs of the family. Some healthy children become overachievers to make up for their sibling’s challenges, others become surrogate parents and take on parental responsibilities. Still others become defensive and feel they have a responsibility to defend their sibling. Regardless of the role they take, their need for help may not be obvious and thus they do not command the attention either in the literature or in supportive groups.

In 1974 I wrote my doctoral dissertation, “Sibling Relationships in Families with a Retarded Child.”  I was unaware of the lack of resources, but knew that I was interested in finding out more about other families like mine.  Growing up, I had not known any other families with developmentally disabled children and was reluctant to ask my mother too many questions for fear I would upset her. I had been told that my sister Frances was a normal baby and only started to change when she was about two years old. It seemed natural to want to be a “big” girl and do things for myself, in fact I felt proud when I could do things Frances could not. All that changed, however, when my parents became old and more responsibility shifted to me. I felt overwhelmed and didn’t really have anyone to talk to. I realized only those who had had similar experiences could understand my challenges as the sibling of a developmentally disabled child. It was at that time that I learned the importance of having a “group.” The AHRC had helped me with my dissertation, and through them I met Kathryn, Marilyn and Bonnie. We got together and formed a sibling group. Little by little this group of four has grown and today consists of a thriving 30 registrants. They are now accepted by the AHRC and take trips and go to camp together.

The value of this experience for me many years ago and the apparent lack of other similar groups, inspired me to approach the New York Metro Chapter of the National Autism Association with the idea of forming such a group for children. When the announcement was sent out to NAA NYM’s mailing list, the response was immediate. People signed up to have their children – ages 8-13 – come to our group on a monthly basis from February through July 2012. It was now necessary to find a place where the group could meet. We were fortunate to obtain space with “Emerge and See,” an educational center serving children on the autism spectrum and their families. They were extremely welcoming, set aside a cabinet, and arranged one of several rooms in an appropriate way for the group to gather.

We started slow, so that the children felt comfortable in sharing their feelings, which they eventually did. The first week we each told a bit about ourselves, and our families. Nothing specific - things that we liked to do in spare time, our favorite T.V. programs, and things that we did as a family.  By the fourth week, many different feelings emerged. There were opportunities to learn more about the implications of their siblings’ special needs. The themes that came up in my group in 1974 are the same themes children in our NAA NYM group expressed, almost 40 years later. One constant theme reiterated by several of the program participants was the lack of a sibling to play with, another recurring concern for some children was the sense of embarrassment when their sibling acted up in public places.

As one child said, she is embarrassed when her family goes shopping and her sibling starts having a fit and making inappropriate noises. When people stare at them she doesn’t know what to do. Others shared their experiences. Another child in the group was curious as to whether I had ever experienced this behavior with Frances and asked what I did.

I said that yes, I had experienced similar embarrassing moments over the years. As I got older I learned to smile and walk away. I learned that people are frightened when they see unusual behavior, but it still bothers me that they look at me as if I should be able to do something about the outburst - or at least that is what I imagine they are thinking.

The goal of this group is for children to know other kids out there who have many of the same struggles and to learn ways in which they handle the different situations they face.

Each child has a different story and a different experience, but often knowing that there are some similar challenges involved and that they are not alone, helps make each day a little easier and a little less lonely.

It is my hope that other organizations will follow NAA NYM and start similar sibling groups. When children learn that they not alone, regardless of the challenges they face, they can grow up with a better sense of who they are and what they want for themselves.

The National Autism Association NY Metro at NASQAQ Opening Bell 2012

The NAA New York Metro Chapter was invited to ring the opening bell. Kim Mac Rosenberg spoke about Autism Awareness Month.

Living On Purpose by Lena Rivkin

Readers, we are excited to post what we hope will be the first in a long line of posts from Lena Rivkin. Lena is the sibling of an adult brother with autism. She provides a wonderful perspective on autism past the early years where many of us now find ourselves. Thank you Lena for this insightful essay!

Lena and Phillip

I never know when to stop saying Happy New Year. I strive to hold onto the feeling of renewal, hope and fresh starts that the New Year provides. But holidays quickly recede into the rear view mirror, since the business of living demands our full and present attention, until the next round of designated pre-programmed holiday landmarks sneak up on us. Of course we all endeavor to live as if every day were a holiday or the first day of the rest of our lives, but that eventually becomes exhausting- usually around mid-January.

However, for those of us with special needs children or siblings, we consistently struggle with how to make the every day more meaningful and resonant for them. My brother, Phillip, is a severely autistic adult and lives in a group home administered by New Horizons. I feel a certain amount of self-imposed pressure to make each visit with my brother intently unique: for his wellbeing, his development, to bring some joy into his quiet little world.

This year I’m resolving to invent cost effective yet special monthly ‘holidays’ for Phillip. And I believe this is an idea we can all build upon and re-invent with our particular families in mind. Each family has a favorite activity- whether our monthly ‘holiday’ is organized around a favorite sport or place to go, making food, music or art together; it is within all of us to find creative ways to make family time together vivid, fun and commemorative.

In my brother’s home we celebrate everyone’s birthday, even if it’s staff or a family member. This creates a loving and fun-filled family-style environment where any seemingly ordinary day is special to someone and worthy of attention. And exposing our special needs family member to variety, to change and the world outside them is as important for them as it is for us. New Horizons places a special emphasis on frequent group outings, which many of the clients anticipate with glee.

As a child I would veer from being overly protective of my brother to being embarrassed by him. Once, when our parents took us to a restaurant Phillip casually helped himself to another diner’s French fries while we were walking to our table. He was ten and figured that since he loved French fries he was welcome to them, no matter whom they belonged to. Our parents had a great sense of humor about Phillip but I was seven and wanted to crawl under the table. We both have grown up in our own ways- I’m no longer concerned about what the world thinks of my brother and he no longer helps himself to other people’s meals!

I know it’s crucial to take Phillip out into the community. Society needs to be exposed to every kind of person. We all need to swim together among our differences and commonalities. Hopefully bringing Phillip and his friends from New Horizons out shopping will promote education and understanding as to how other families cope with life’s challenges. Our special needs siblings and children have guided us to open our hearts to people with disabilities- and out in the world, Phillip sweetly wins the hearts and minds of people who once eyed him with apprehension.

One of the myths of individuals with special needs is that there is a lack of emotional sensitivity and limited interest in the outside world as compared to higher functioning people. When someone does not communicate verbally or with socially acceptable body language, it is easy to dismiss this person as being unworthy of our attention. Besides, we are all deeply consumed with making our lives tick like Swiss clocks; it’s increasingly difficult to make time we just don’t have for those of us with complicated needs.

A thoughtful and insightful friend recently asked if I shared information about my life with Phillip. I was stunned to consider the notion of my brother wanting to know about my life. I’ve usually been so consumed with caring for him, that the one person who has known me longer than anyone living- has a severely limited knowledge of me … because it never occurred to me that the details of my life would matter to him.

On my next visit I was taking Phillip to get his haircut. Phillip truly loves going anywhere but he especially loves getting his haircut because Catalina, his stylist, dotes on him and has one of his needlepoints framed on the wall of her Dominican Salon. It’s very moving to see people take time for Phillip and for them to create meaningful moments for him. Catalina is one of these people.

In the car ride over I knew Phillip was excited because he was humming. I decided to talk to him the way I would talk to a friend. I casually chatted to Phillip about my latest art project. As I was talking, my brother stopped humming, looked me straight in the eye and held my gaze. I could tell he was paying attention to me. This was a deeply teachable moment... for me.

Believing that my life is as important to my brother as his life is to me is one of the light bulb moments that make regular, ordinary days anything but.

The bar has been raised. Here’s to a new year of discovering what tiny gestures can contribute meaning and love to our deeply special families. Having a monthly celebratory goal can keep the feeling of a new year with new hopes alive longer than the resolutions that dissolve somewhere around January 15^th.

Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.