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.

Top Ten Ways to Maximize Reimbursements for Autism Therapies by Jodi Bouer, Esq.

Jodi Bouer, Esq. has a practice in Princeton, NJ dedicated to obtaining medical insurance reimbursement and coverage for autism related therapies and treatments. She spoke to our group on Thursday, January 26th at the Rebecca School.

Here is her top 10 list:
1. Get copy of your policy - the 150 pager, not the summary HR gives you!
2. Read it! (oy!)
3. Don't believe anything the insurance company says - check your policy
4. Know which law applies - which state law applies
5. Make claims on a timely basis
6. Support your claim - proper documents
7. Make your appeals timely and per the insurance contract (the policy)
8. Use the right codes
9. Make sure your providers are qualified - have the right licenses, degrees, etc.
10. Be organized and relentless - we autism warriors are all relentless!!!

Here is a link to her full Power Point presentation. Bouer Law Top Ten Ways to Maximize Reimbursements for Autism Therapy

Lots of good information here!

NAA-NY Metro Holiday Party - Honoring Our Friends and Supporters and Having Fun!

Last night the NAA - New York Metro Chapter hosted our annual holiday party. I think it is safe to say that a good time was had by all! The party is an opportunity for us to bring together the many people who, in so many ways, have helped NAA NY Metro throughout the year. I wish that the party could have lasted all night so that I could have had more time to chat with everyone!

A very special thanks to our friends and supporters whose dedication to our Chapter made 2011 a great year. We look forward to more great things in 2012!

As the Dalai Lama says, “When you practice gratefulness there is a sense of respect toward others.” In that spirit, I am so grateful for all those who work so hard to make NAA - NY Metro the success that it is and I respect and appreciate the time, energy, creativity, and giving of self that so many undertake to help this cause. This chapter would not be what it is without each of you – NAA-NYM is a true team effort.

Last night we did not get the chance to personally honor all our speakers and others who collaborated with us this past year and want to acknowledge each of you here. It humbles me that each of you gives so much of yourself to help our organization. I cannot thank you enough. Our 2011 luminaries attending last night included:

Mark Berger

Laura Brienza

Peta Cohen

Stuart Flaum

John Gilmore

Mary Holland

Jane Hsu

Darin Ingels

Arthur Krigsman

Nancy O’Hara

Shirael Pollack

Susan Roberts

Jayme Lewin Rich

Michael Sanders

Ken Siri

Lauren Tobing-Puente

Katie Wright

A special thanks to Jill Hopler of Your Personal Foodie for the amazing spread (and to Board Member Kirstin Boncher too!) – the food was incredible. Thanks too to Katz Gluten Free for their donation of yummy fruit pies and rugalech.

Thank you also to our many friends – both long-time friends and new ones - who came last night to share and celebrate with us. We so appreciate each one of you and we look forward to many exciting new collaborations in 2012.

I particularly want to thank the Officers and Board Members for a fabulous 2011. Last night was a chance to loosen up and have fun – and for each of you it is well-deserved. What a team - your dedication to NAA-NYM is inspiring. Thank you Peggy, Lisa, Sabeeha, Khalid, Stuart, Kirstin, Kathleen, Mary, Katie, Dara, Amy! Our committee members, volunteers and NAAvigators (parent mentors) are amazing – the work they do is critical to the success of NAA-NYM and, most importantly, to helping families and others whose lives have been touched by autism.

Thanks to our set up crew who made the room beautiful, set up the delicious buffet, and provided good company during the process – Janice, Dara, Lisa, Mark, Jill, Kirstin, Selma - and our clean up crew - including balloon poppers Albert and Mark!

Last night we recognized our former President (and current Officer-at-Large) Sabeeha Rehman and our Advocacy Chair, Khalid Rehman, for their dedication to NAA NY Metro. We have named a $1000 grant in their honor and Sabeeha and Khalid will direct us on how to apply the grant to further NAA NY Metro’s mission. Here is a video clip of the presentation:

SAFE AND HAPPY HOLIDAYS TO ALL!

Kim Mack Rosenberg
President, NAA - New York Metro Chapter

October 5, 2011: Vaccine Epidemic Book Talk and Discussion

On October 5, 2011, Mary Holland and Kim Mack Rosenberg, co-editor and contributing editor, respectively, of the book Vaccine Epidemic presented a number of key points from the book on law, science and issues in the debate surrounding vaccine choice and led a lively discussion. N. Chin, a parent who attended the Vaccine Epidemic talk, contributed her impressions:

I have continued to seek knowledge about root causes after my son regressed due to vaccines. The book Vaccine Epidemic contains many revelations about how vaccine safety remains a low priority by those who manufacture vaccines and control immunization policy. I welcomed the opportunity to meet with like-minded parents and professionals for a book discussion on Oct 5.

I will focus on the open discussions following the presentations and the goal of knocking down this 'house of cards' as Mary described. She said it has to be through the legal system and as a human rights issue. Others that evening mentioned how results of objective studies will change opinion.

I have to agree with Mary about affecting change through the legal system. Unless these studies receive air time equivalent to what teens see on MTV with HPV/Gardisil ads, or parents see in Parenting magazine, it is indeed extremely difficult to combat long-held beliefs that vaccines are as natural as “mother's milk.” It is clear that Big Pharma can outspend us and squash the most logical and compelling of studies.

We need to help find legal avenues and budget to knock down this house of cards.
One way is to support the Center for Personal Rights. They mentioned organizing with civil rights organizations as well. I plan to see if a couple of my contacts in DC can offer ideas. If we take the time to check our contacts and make some phone calls, we may just get there.

I wish to end on a hopeful note.

In the book, there is a letter by Dr. Francis Moore, who was a very prominent surgeon at Harvard Medical School. If someone as mainstream as Dr. Moore can be convinced of ill-conceived policy, then I remain hopeful that human reason will prevail.