On Friday evening, January 19, I joined The Reform Temple of Forest Hills, NY, for their Sabbath service, with the focus on inclusion. I was invited by my friend Sue Izeman, who I met when she was director of the Greenwich Autism Program where my daughter was enrolled in a social skills group at age 8.
Here is my talk to the congregation:
Shabbat Shalom. Thank you to Rabbi Kaiserman and Susan Izeman for inviting me this evening to speak with you this evening.
I first want to tell you about our family temple experiences. And then I will share with you how I decided to address the issue inclusion for adults with autism.
Religious Life Inclusion
I grew up in the Newton, Massachusetts, a suburb of Boston where our family belonged to a synagogue. I went to Hebrew School and became a Bat Mitzvah. I joined B’nai Brith Girls and was active in the temple youth group.
Years later, when I moved to Manhattan, I wanted to connect with other Jewish young adults so I joined the UJA singles professional group and went on a mission to Israel. I attended services occasionally at a Greenwich Village synagogue and I joined the 92 Street Y.
Years later, my husband and I were married by a rabbi. When our daughter was a year old we had a baby naming ceremony with a rabbi at our apartment. So I assumed our next step in Jewish life would be to join a synagogue in our community.
But my attention was diverted. Our 15 month old our daughter, who had about 8 words, stopped talking. Although our pediatrician dismissed it, we pursued evaluations. We then moved to Westchester and sought out more evaluations and then services for her. At two and a quarter she started early intervention therapies. At age 2 and a half she was diagnosed with autism spectrum disorder.
The spectrum refers to the degree of challenges one has in various domains- communications, repetitive behaviors, rigidity, sensitivities, emotional regulation, and intellectual ability.
Our life was focused on helping her learn to talk and to connect with the world. She continued in various special education programs but by age 8, I felt she could benefit from observing, modeling and interacting with typical girls. I wanted her in an inclusion class in our home district of White Plains.
My daughter is an only child and we had no family or friends with neuro-typical children in the area. So, she did not benefit from the “tag along” opportunity from having a typically developing sibling or cousin.
Around this time our local Chabad invited us to join Friendship Circle, where they paired volunteers with kids with disabilities. The Chabad network was so welcoming and accepting.
Meanwhile, we had not yet joined a synagogue. In hindsight we should have as soon as we moved to Westchester; it would have been a great way to connect with people before we knew about Isabelle’s diagnosis. But it took me a while. I had a full time job and was a full time manager for my daughter’s therapies and education.
When Isabelle was 8, I discovered Matan, a special education religious school program, that held Sunday classes for kids with disabilities who were not being served by their synagogue. They borrowed classroom space at Solomon Schecter and then at the JCC. This was a great way for Izzie to learn about Judaism and develop friendships and for me and Paul to connect with other Jewish families in a similar situation.
When Izzie was about 11, I decided that I wanted her to be included in a temple’s Hebrew school class and prepare for her Bat Mitzvah. So we joined a reform temple, with the promise of inclusion for her. That was not to be. She was put in a self-contained class with 4 boys that met on Sundays and never was integrated with the other classes, other than to sit in the back of the sanctuary for 20 minutes on Sundays to sing songs. Izzie knew several girls from public school but they ignored her. When I asked the religious school principal if Isabelle could go with her age class on the Ellis Island trip, she said “that would not be appropriate.” The same for the tenement museum.
I am an extrovert and yet I found it difficult to connect with members and the few people I knew from public school or our neighborhood ignored our family. I was asked to join an Inclusion committee – but there was little interest from the congregation, the clergy and the leadership. And besides – how could I come up with a solution to being excluded? I was perfectly willing to be inclusive. I attended a conference on incisive synagogues but no one else from our temple participated.
My daughter came to Friday night services but one night when she sat next to some girls she knew from public school, they all got up and moved away. She refused to return after that.
I arranged to have her tutored for her Bat Mitzvah, which was actually a very good experience for her. The service was customized for her since she did not read Hebrew, but included lots of singing of prayers, which she loves. It was an amazing day and Izzie was thrilled with the experience.
When it came time to renew our membership later that year we declined.
Inclusion – preparing for adult life
By the time Isabelle was in 5th grade we realized that our school district was not committed to inclusion so with the help of a lawyer we had her enroll in the another school district where there was a successful inclusion program.
Our goal was always to have her become an independent adult and to have friends. To me that included having a job and feeling productive. I learned that this is not typical – 80% of adults with autism are not in the workforce. Let me say that again – 80 percent do not have a job. And only 53% have ever had a job after high school or college.
Intellect and academic achievement are not the key factor. People with intellectual disabilities are employed at a much higher rate.
The typical path after high school for teens with developmental disabilities is to go to a program akin to adult day care. It’s call day habilitation, or day hab. These programs run from 9 am to 3 pm 5 days a week. Participants go home after their program. Another sad statistic: 80% of adults with developmental disabilities live at home with their aging parents.
Over the past decade, with the push towards more inclusive public education more students have been able to earn a diploma. Some students even go on to college. But a diploma does not prepare a student with a disability for work.
Most high schools no longer offer vocational education. So to prepare students for work, high schools started arranging internships at local businesses with a teaching assistant serving as a job coach.
There are two problems with this “internship” approach: First, the business typically has no requirement to help the student develop skills that would lead to employment. They do, however, get free labor.
The second is that the teaching assistant typically doesn’t know anything about business, or the range of skills that are needed. So they just focus on helping the student complete a task that the manager assigned – like removing out of date vitamins from the shelves at Walgreens. Unless she wanted a career at a pharmacy or grocery, that is not a transferable skill.
I asked my daughter why she was doing that task, and she could not answer. No one explained what “out of date” meant; the implications to the business of selling out of date merchandise or the impact to the customer for buying old product. She was not engaged, and therefore not motivated.
What are the characteristics for success at work ? They are
• Motivation and ability to persevere
• Good social communication skills
• Good emotional regulation
• Problem solving skills
• Cognitive and emotional adaptability
• Flexibility and ability to shift attention and priorities
These are all challenging for people with autism.
No matter how simple or complex the tasks are at work there are universal skills that people need such as
• How to collaborate with peers
• How to problem solve – with incomplete information
• How to make a recommendation
• How to take responsibility and initiative
• How to accept someone elses priorities – like the manager’s or the customer’s
• When to ask for help – and
• Accepting critical feedback
Students in general education are developing these skills because they are inadvertently incorporated into their curriculum. Students in special education are not developing these skills.
I saw that my daughter’s internship program was falling short on skill building. I believed the way to engage and motivate her to learn a much broader range of skills was to focus on her passions. Besides Broadway, her passion has always been American Girl dolls. Her career goal has been to work at the American Girl store in Manhattan.
I thought about creating a business that replicated the experience of the city store. But I put the idea on hold. I still had a job at IBM that paid a salary and health benefits.
Fulfilling a need
Fast forward to 2013 when I unintentionally retired from my 30 –year career in corporate marketing. By then I realized that Isabelle, now 18, was not the only one who needed to learn transferrable job skills. So instead of starting a doll business for Izzie, I decided to start a job skills program for many young women like Izzie.
I incorporated Yes She Can and registered as a non-profit organization and then started the first venture: Girl AGain boutique, a resale shop for American Girl dolls. I began soliciting donations of used American Girl merchandise.
Through my network I identified young women who wanted to participate as trainees. I rented a 125 sq foot space inside a hair salon for little girls – the same customers we were targeting.
Because I wanted to focus on transferable skills, I developed a series of processes to prepare and sell the merchandise, with each task having a business rational and a transferable learning opportunity.
After 7 months in our start up location we moved to a larger space so that we can now have 4 trainees and one or two job coaches working at the same time.
We have more space to display the merchandise, and we can have a dozen customers in the store at the same time.
Our mission includes educating the public about autism and the potential for adults with autism to be part of the workforce and the community. Many people think of autism a childhood disorder. But children with autism grow up to be adults with autism. Our trainees interact with the public – parents, children, grandparents – and hopefully change their perception of autistic adults – they are not all Temple Grandin or Rain man.
Getting to employment.
I had assumed that the large established social service agencies responsible for helping people with disabilities find jobs – would be able to place our trainees in meaningful work.
From our experience, these agencies do not have the skills and business connections to place most people with autism.
Finding meaningful employment is still a challenge. Most of our trainees need to have part time jobs because it is exhausting for them to function in the neuro-typical world.
Most businesses are reluctant to hire people with autism. We need employers to be open to customized employment; to reorganizing job responsibilities so that they can benefit from employees who have unique attributes.
What is the future for my daughter? She is 21 and taking classes at Westchester Community College, with support through a program that provides peer mentors. She is a trainee at Girl AGain several hours a week and works independently at the store on Sundays. Her goal remains to work at American Girl.
Will she or any of our other trainees get jobs? Will they be fully accepted and included in society? I don’t know.
Us or Them?
On Thursday NPR aired a report on people with developmental disabilities being sexually assaulted at a rate of 7 times greater than the general population – and that there is little repercussion for the perpetrators. When a jury was asked why they acquitted one rapist, the jurors said it was because the victim was just “too weird”.
People with disabilities are the largest minority group in the country. 20% of the population has some type of disability. Chances are pretty high that you may become disabled. You are only all one fall away from a traumatic brain injury, a car crash and you are in a wheel chair for life, glaucoma can take away your vision overnight. An accident in the delivery room may cause your newborn child to have cerebral palsy. Or she might be born with autism.
We are all made in God’s image.
People with disabilities are not others, they are us.
And we must include us.