Introduction
This is a story about my family and inclusion and diversity. I have changed the names
of my family members to protect their privacy. My wife and I have 2 adult daughters,
Rachel, the older daughter, and Ariel. Rachel is neurotypical and high achieving. Ariel
is neurodivergent – having developmental disabilities, bipolar disorder, attention deficit hyperactivity disorder, and is on the autism spectrum. I will first share Rachel’s life
experiences, followed by Ariel’s.
Rachel’s Relationship with Ariel
Rachel was 5 1/2 years old when her younger sister, Ariel was adopted as an infant. We chose to adopt a child who we knew would likely have disabilities. Rachel and Ariel’s relationship was challenging, due to Ariel’s developmental disabilities and their age difference. Their lives were quite separate. Rachel’s life was impacted by the amount of attention given to Ariel’s challenges. Rachel needed to retreat at times from Ariel, for safety reasons. Family activities inside the home, family outings, and vacations were the main times Rachel interacted with Ariel. Rachel’s experience with Ariel was a factor in why she was a summer camp counselor at a day camp for kids with special needs. Rachel wrote her college admission essay on her relationship with Ariel. In the essay, Rachel used the metaphor of our family’s photo hanging on the wall, as “crooked” – never to be straightened. She concluded that a “crooked” photo of her family is still a family that is complete and to be valued. My wife and I have set things up for Ariel’s future so that Rachel will not have to be responsible for her care.
Rachel’s Jewish Experience
Rachel went through mikvah conversion in preschool along with my wife. Rachel attended religious preschool, after-school religious classes, and had her Bat Mitzvah & Confirmation through Conservative Judaism.
Rachel’s International Experience
While my wife was focused on Ariel’s development, treatment and care, I was able to take Rachel on international trips throughout her life: Australia/New Zealand to visit my wife’s brother; several trips to New York City; touring South Africa, Uganda, Rwanda (including the Kigali Genocide Museum in Rwanda). However, we were able to take our entire family to visit our Jewish relatives in Argentina and Uruguay.
Rachel also travelled internationally on her own group trips: China, Europe during high school; Israel Birthright trip during undergraduate; helping developing countries in Central America on college spring breaks; study abroad trip to South Africa. Ultimately, Rachel moved permanently to South Africa in her early 20’s, and currently has a job as
an Environmental, Social, and Governance (ESG) consultant to developing countries predominantly in Africa. Rachel has been to over 40 countries and counting.
In her personal life, Rachel married a Black South African of Zulu ancestry – their wedding contained both Zulu and Jewish elements. She and her husband have a 15-month-old daughter and are currently expecting a second child. They have a robust multicultural friendship group where they reside in South Africa.
Ariel’s Relationship with Rachel
Ariel has always adored her older sister Rachel. But because of Ariel’s outbursts, it was difficult for them to be connected in a stable manner for many years. Now that Ariel is older and more stable in her behavior, they get along much better. Ariel misses seeing her sister and looks forward to visits. She successfully was able to travel to South Africa for her sister’s wedding and looks forward to having yearly trips there. Ariel also loves her niece and her brother-in-law.
Ariel’s Jewish Experience
Ariel went through mikvah conversion before 1 y.o. (she was adopted from a non-Jewish family). She attended several years of after school religious programming, with aides. However, it became too difficult to continue such religious programming with typical kids. Ariel did not have a Bat Mitzvah, as the process was too difficult, given her behavior.
There was one Jewish organization that fulfilled social and Jewish exposure for Ariel at an early age, continuing up until she was an adult: Friendship Circle, an international Chabad organization for neurodiverse children, pairing teens with these children to foster friendships. Friendship Circle gave Ariel a Jewish experience on her level. This organization helped us through Ariel’s most difficult years, providing daily time away from home in the summers, which gave my wife and I a needed break. Every year, Ariel, my wife and I participate in the Friendship Circle Walk.
Currently, Ariel celebrates Friday night shabbat blessings with my wife and me. Every other month at our synagogue, Ariel, my wife and I attend special shabbat services for neurodiverse people. There is a specially created siddur for this service, and Ariel and other neurodiverse Jewish young adults read both English and Jewish prayers at the bimah. Another service Ariel enjoys attending at our synagogue is a lively Kabbalat musical shabbat service with varied instruments.
Ariel attends the younger family services on Rosh Hashanah and Yom Kippur. At the regular Rosh Hashanah service, Ariel also goes up with my wife and me for an aliyah. Ariel likes to visit several Jewish cemeteries on a regular basis to see her relatives’ graves, and to see the plots where she and her living relatives will be buried. She strongly identifies as Jewish, and looks forward to celebrating the high holidays, Hanukkah, Purim, and Passover, both at the synagogue and with extended family.
Ariel’s Education
Ariel’s regular education – starting with preschool through high school – was always in special education classes, separate from typical students. Her school district was one of the stronger districts for special education.
Ariel’s Living Situation
After high school, Ariel began living in a condo that we purchased for her. She lived there for 8 years with support from us and aides. It was not sustainable long term because there were no social opportunities, and all maintenance and upkeep was provided by us. She couldn’t live there if my wife and I were no longer able to help her out, and given her sister is permanently settled in another country and also cannot help her out. After having searched for a “forever home” for Ariel since she was 3, we recently got Ariel moved into an innovative community for neurodiverse adults. She lives in her own home there, along with homes for other neurodiverse adults and a Clubhouse for various activities. The community is a solution for long term living, as at some point we will no longer be able to care for her. It provides social interaction, programming, and additional layers of support beyond aides and family (2 resident assistants, who live on site, plus a community director). It is conveniently located near the town’s community center, library, parks, and shopping center. It has been welcomed by the town’s government officials and residents.
Ariel’s Other Support Systems
Ariel attends a day program during the week which helps her with socialization and activities of daily living. She participates in sports programs designed for neurodiverse children and adults. The sports programs help her with physical fitness, sportsmanship, and socialization.
Some Short Stories About Ariel and Inclusion
Last summer, Ariel was swimming in a neighborhood pool and exhibiting difficult behavior. Two young girls, an older and younger sister around ages 10 and 6 saw her. The 6-year-old said to her older sister, “why is she acting like that?” The older sister responded, “every person is unique”, and proceeded to direct her younger sister’s attention elsewhere. This was a very touching moment, that a 10-year-old recognized someone who was having difficulty, and responded about it with a positive message for her younger sister.
Ariel has on many occasions reached out to other neurodiverse kids/young adults, helping them to feel comfortable playing new sports. She stays with them, explains the rules and shows them what to do. She verbally encourages them, and gives them opportunities to perform, such as by handing them the basketball to shoot.
Conclusion
As you can see, our family has been very fortunate to have found support systems for Ariel – both religious and nonreligious – that value inclusion and diversity. Our other daughter, Rachel, through her experiences of being an older sister to Ariel, and through her international travel, has also learned to value inclusion and diversity.
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