Thirteen years ago, I spent Yom Kippur breathing heavily, eating ice chips, and causing intense drama by needing to push ten hours earlier than the on-call hospital staff had predicted. All privacy was lost when my husband received my phone call, ran out of shul and abandoned his gabbai post to witness the birth of our son. Few who were there have forgotten the moment’s melodrama, and the fact that I was a week early surprised everyone we called once the fast was over. The complications of a Sukkot bris over a three-day Yom Tov were intense, but the joy overrode the stress (for the most part) as we celebrated Josh’s entrance into the covenant with family.
Two years later I re-entered shul with Josh in my arms and his recently pronounced autism diagnosis in my mind. I’d gone because that’s what I’d always done on Yom Kippur; it was a mistake.
People approached us with choruses of “Happy Birthday!” wanting to reminisce about his birth which seemed like yesterday to them, but a lifetime ago for me. I was in shock, pain, disbelief, and not yet ready to inform others of Josh’s recent developmental update. As soon as I saw my husband, I pulled him aside and burst into tears. “I can’t be here,” I said, and he understood. I wasn’t ready to come out of the autism closet, nor was I emotionally in a place to reflect on or atone for any past indiscretions. I quickly left and hoped that anyone who saw my sad countenance assumed it was due to the day’s solemnity.
Since Josh’s diagnosis I’ve played synagogue attendance during the High Holidays year by year. My husband can blow the shofar and bought one after this incident so I wouldn’t be forced to make a decision as to whether or not to go until the actual day arrived. In order to save myself any undue aggravation I continued to pay for my seat in the women’s section to allow myself flexibility.
As Josh grew older and his deficits became more obvious and tougher to manage, the possibility of bringing him to shul disappeared.
As Josh grew older and his deficits became more obvious and tougher to manage, the possibility of bringing him to shul disappeared. My husband came home to relieve me so that I could attend at first, but it became too hard. Sitting alone in the women’s section and seeing families increase and advance yearly became a tough pill to swallow. The phone call from the shul’s seating committee every few years asking me to move from my assigned place to accommodate another family’s growth made me feel insignificant, despite the fact that I knew the request to be reasonable and always agreed. But reason doesn’t mitigate pain, and in pain I was. If in order to cope I needed to be alone as opposed en masse, so be it.
As Josh’s thirteenth birthday approached a new layer of complexity was added. We’d already decided not to put Josh through any attempt at a traditional Bar Mitzvah. My husband and I didn’t feel comfortable forcing a child with limited verbal capacity to recite rote Hebrew words that didn’t have real meaning for him. Instead we had intended to throw him a Bar Mitzvah birthday party in school with a personalized book about turning thirteen, what that meant in terms of reaching a new stage of responsibility, and our newfound expectations of him. Just as we had fully come to accept and look forward to the atypical celebration we’d been planning, COVID-19 hit hard. A virtual Bar Mitzvah birthday party would be too abstract and confusing for Josh, so we’ve decided to wait until it’s safe enough for him to return to school and it can be celebrated by his classmates at full capacity.
But all of this drama of Yom Kippur 2020 has given me new perspective. This year when the synagogue’s seating forms arrived in the mail my husband asked if I wanted to buy a seat. For the first time I said, “No. I want to let it go.” COVID-19, Josh’s thirteenth birthday and dealing with his autism during lockdown has actually brought me to a level of acceptance that I couldn’t have anticipated, despite all of the challenges that it entails. It's taught me to live in the moment, to focus on the things I can control, to let go of what I can’t, and to accept that if I must deal with the unknown, it’s far easier to do so without stressing about it.
I don’t believe I belong in shul in a socially distanced prayer service this year. I belong at home with my son who is exempt from performing mitzvot, and thereby unrequired to keep them. What better way to honor the day than to spend it fasting and reflecting while caring for Josh, who is consistently honest, authentic and deemed incapable of sin? His behaviors may not give off spirituality, but he was born on the holiest day of the Jewish calendar when many are reflecting on how they can better themselves and the lives of others. And since Josh is automatically granted God’s forgiveness for his deficits, maybe God can grant me the same grace for my dedication to my son, and forgive my transgressions so that I can continue to better serve myself, my family, and the world at large.
I can’t think of a more meaningful or appropriate way to spend my son’s thirteenth Yom Kippur birthday than that.
(14) Alison Lynch, September 28, 2020 8:02 PM
beautiful sentiments Jennifer, thank you.
Hi Jennifer, While I am not orthodox and high holiday tickets are included in my synagogue membership, I have not attended holiday services regularly and my presence or absence is not so easily noticed in a more relaxed Jewish community. However, I can relate to the alienation you came to feel as you stayed home year after year with your son. While his diagnosis and behavior is not under your control, the reasons I have not attended services are also not so well known or "controlled" as a result of some early childhood experiences that have affected my attention span, my motivation, even my willingness to "obey" or attend to my God given faith as a Jew.
But what I have learned is that whether God is watching or other Jews are watching, we as women, as mother's as Jews are most accountable to ourselves and must "release" our shame, guilt, and "shoulds" before we can fully serve God the Father. It is in our Teshuva to self first, and then to God that we are free to be who we are called to be in God's sight. So, congratulations for doing what is right for you, for your son, for your community by living by what your higher or Godly self has known all along. It is in having inner, Godly driven confidence, that we can change our corners of the world, by intentional and focused decisions that are reflective of God's will for us and our loved ones. And Baruch Hashem for your supportive husband!
(13) Achina Sunday Alexander, September 28, 2020 2:54 AM
I need a Jews synagogue in Abakaliki here Biafra land
(12) Bernice Grant, September 27, 2020 7:11 PM
Thank you for your honesty in dealing with this most personal subject.
Retired teacher 87 years young ...taught Boys with learning disabilities......called the SLD CLASS ie SPECIFIC LEARNING DISABILITIES as one of my most treasured time /moments during my teaching years which also included autistic children .................Class size was 8 boys who were also at the same time being integrated in regular class in Phys Ed and Shop .All went well well till the BOARD decided to include girls...This was a disaster . Still keep in touch with some of the boys .....One of my boys just emailed me re of TP in the class who was taxied in from a farm who would get upset if shoe laces were left dangling as then the boy would be bound in the binder.
(11) Cheryl, September 27, 2020 6:42 PM
Even though Yom Kippur has special relevance to you and your family, you are wise to put the needs of your son above seasonal obligations to the Synagogue. Congregations will always do what Congregations do on the High Holidays, that will never change. But you son will offer you something different each year, and he will be a blessing to you and you husband, even though the family's celebration of Yom Kippur has been altered.
(10) Yaakova, September 27, 2020 2:07 PM
Gamar Chatima Tovah
May you be written and sealed for a good year. Your words and sentiment were absolutely beautiful. May HaShem bless you and your husband to feel much nachas from Josh, a most loved child, born on the holiest day of the year. You spoke from the heart that is inside you, which is a mother's heart. As the mother of a child with difficulties yes, I very much understand. Thank you for writing such an expressive piece. May HaShem bless you.
(9) David Fillingham, September 26, 2020 12:20 AM
havurah Shalom in Somerville, Massachusetts
i have a friend who works for the aspbergers (sic) association of massachusetts and I have the privilege of getting to know people variously on the spectrum, and to see people in my life also on the spectrum. There is a place for everyone in hashem's world.
(8) Anonymous, September 25, 2020 3:00 PM
Best Bar Mitzvah drasha ever
I used to drive carpool sometimes for my ASD son and his peers at an school for kids on the Austism Spectrum. One carpool kid was always VERY quiet. At his Bar Mitzvah, he actually spoke a few minutes and thanked his parents and relatives for coming. It was very moving and the most emotional drasha I ever heard. IY"H He will give your son the strength to amaze you too in the future.
(7) Martin Fuchsman, September 25, 2020 12:40 PM
Understanding
As a parent of an adult autistic man I completely understand the feelings expressed in the article. It was always difficult to watch other children of my son’s age as he grew up go onto Yeshiva, college, study in Israel and all life milestones
(6) DMAJTEXAS, September 25, 2020 12:15 PM
I totally understand. We have two boys with the same condition. We are Roman Catholic but struggle with the same types of issues. G-d be with you and your family!
(5) Sindee Karpel, September 25, 2020 12:06 PM
You are not alone
Thank you for sharing your story. We also have autism in our lives. Our twin boys both have autism and are now in their thirties. One is more affected than the other. Support groups, case management, a committed spouse and an understanding psychiatrist were the ingredients for our successfully navigating through the early years!
(4) Nancy, September 25, 2020 10:55 AM
As the mother of a child with autism, please contact me as well
I see that you live in Queens. I used to live there and my son attended Kindergarten and first grade in a public school in district 26. Please reach out to me as well: nancyperkins@gmx.us. Thank you for sharing your jpurney with all of us.
(3) Arthur Golden, September 25, 2020 10:42 AM
As the father of a 48 year-old son with autism, please contact me.
As the father of a 48 year-old son with autism, please contact me. Although my wife and I and our son Ben, who is completely nonspeaking and had challenging behaviors especially up to age 13-1/2, have lived together in Jerusalem Israel for over 20 years. I am quite familiar with the educational services available in the U.S. and as a retired lawyer on a voluntary basis I think I can provide some advice. Of course, contacting me until after Yom Kippur will be difficult because of the time difference. My email is golden.arthur@gmail.com
(2) MESA, September 24, 2020 9:35 PM
Thank you to my friend Jen for sharing this & for being a kindred spirit & inspiration to me & others.
(1) Shelly, September 24, 2020 12:42 PM
Beautiful piece
Beautifully written.