Off the Shelf: Guidance and love for those with special needs’ families

By Rabbi Rachel Esserman

“It is also to share our story... yours and mine... as I grew to appreciate that what I initially thought was a mistake on the part of our Creator, was, in fact, a gift, one that I did not fully appreciate, well, into far too long a time.” – Ahava Ehrenpreis writing about her son, Saadya. 

Sometimes I request a review copy of a book out of sheer curiosity. Sometimes that curiosity is connected to something personal, as was my request for “More Than Special: Perspective from the World of Special Needs” by Ahava Ehrenpreis (The Shaar Press). Ehrenpreis’ son, Saadya, and my younger brother, Lawrence (Larry), were born with Down Syndrome, although Saadya was much higher functioning than Larry. Since I also do chaplaincy for those with developmental disabilities, I was curious to read a work about how the contemporary Orthodox world approached those with special needs. 

What’s clear from Ehrenpreis’ work is that Orthodox Judaism – much like the secular world – has greatly changed from the days when those with special needs were not expected to live meaningful lives. Her book does not gloss over the hardships and problems families face, but her approach is to focus on the positive by offering encouragement and validation for the emotions many of these parents experience. Sections offer “Spiritual Guidance,” “Therapeutic Guidance” and “Legal Guidance,” in addition to the work’s conclusion that features tributes to Saadya who died of COVID-19 in 2020. The stories told in each section enlarge readers’ understanding of the joys and sorrows these families face. 

Families of children with special needs may want to copy and pass out the one-page listing called “Please Don’t / Please Do” with its two columns of what not to say and the words one should say instead. For example, don’t say “that God never gives you more than you can handle,” or “that you know exactly how I feel,” or “that God must love me to have given me this challenge.” For all of these, Ehrenpreis suggests people simply say, “Mazel tov on your new baby.” The other comments listed are also excellent.

“More Than Special” does raise the question about the sorrows parents feel when they realize their child may not be able to perform mitzvot in the traditional way. Those who believe God is behind everything that happens in this world are faced with determining why this happened to them. Rabbinic authorities are quoted as noting that having a special needs child is not a punishment and suggesting that these children can bring blessings to a family. Yet, parents have to adjust their expectations about what their child will be able to do, for example, whether they will be able to attend a Jewish school, or need the therapeutic offerings of a secular one. Will boys be able to have a bar mitzvah (this is still a culture when many girls do not have a formal bat mitzvah ceremony in a synagogue), and will either sex be able to marry and fulfil the commandments of having children?

The longest section of the book focuses on individual stories, including not only from parents and siblings, but those who have created programs/schools/camps for people with special needs or who worked in these programs. While the stories generally seek to be positive, it’s impossible to hide the pain some people feel, especially when their child is very young. The difficulty of finding appropriate education services is discussed, as are medical problems (some of which are extreme) and behavioral ones. (Ehrenpreis notes how her local police were familiar with Saadya because he often took off on his own and got lost.) There is a debate about inclusive education, something the writers generally support, and offering children the possibility of rising to their highest level of their ability. Some write of doctors who told them their children would never be able to perform general intellectual tasks. That was true for Saadya, but his mother notes the schools he attended and how his accomplishments were far beyond the specialists’ predictions.

“More Than Special” does make it clear that individuals with special needs cannot be treated as a monolithic group. Writers speak about the different options offered as their child grows older, including continuing to live at home, moving into group homes, or living in apartments with supervision. A few note that their children were able to marry, although this did not happen in the overwhelming majority of cases.

It’s clear that “More Than Special” is aimed at a specific audience. The writers use Hebrew terms in their essays, which are not translated, and the work does not contain a glossary since the assumption is that readers will be familiar with the terms. Some of the essays are very moving, especially for those whose families know these joys and sorrows personally. The tributes in the final section show how Saadya’s neshamah (soul) touched the many people who knew him. May his memory be for a blessing.