Some people express surprise that I am so open about my children and their challenges. I often wonder, what does that mean?
I am open about my children, because this is my life. This is my reality. I have a choice: I can either accept it and move on, or resist and be stuck.
I try not to compare my circumstances to other people. It is very clear to me that I am on a different journey than the general population. I focus daily on being grateful to be a mother and for the blessing of children.
As my girls are growing up, coping with the challenges of raising them is changing too.
There is an expression: “small children, small problems, big children, big problems.”
I remember when Yaffa was a baby, her cardiologist quoted that proverb to me. It sent fear and trepidation into my heart.
When the girls were babies, Yaffa was so sick. Between the feeding tube, the heart surgery, the ear surgeries and frequent illnesses, we were “frequent flyers” at the hospital. I became a nurse because my experience taking care of Yaffa. I feel like her nurse all the time. The thought that these problems could become bigger did not make me happy.
I am not sure that their problems are getting bigger per se, but, they are becoming more complex.
I have always struggled to find the balance between meeting my daughters’ educational needs with their emotional and spiritual needs.
It is the norm in our community to educate children by sending children to a religious school or yeshiva. These schools are privately funded. The financial costs are high, but the spiritual benefits are incalculable It is seen as the best way to pass on the spiritual traditions of our faith and maintain a strong Jewish identity.
It is more difficult, for many reasons to educate Jewish children with special needs within a yeshiva. So, many Jewish children with special needs attend public schools.
Yaffa’s disabilities are visible and her developmental accomplishments are more predictable. Public school is the best place to address Yaffa’s complex medical and educational needs.
We supplement her Jewish education through summer camps, weekend social activities and a Sunday school program. The people in our community are also wonderful. We have many volunteers who come to the house to play with her which helps to connect her to the community. For the most part, it works, and we are happy with this arrangement.
Raizel however, is a different challenge. Raizel falls in the gray zone of “almost normal.” Her disabilities are invisible. They are much harder to address. Raizel also has the awareness that she is different, but does not understand why.
For children who have learning disabilities, and/or neurological deficits, it is difficult to understand the world. These children lack the skills to express themselves well, cope with change and be resilient. Coupled with impulsivity, lack of insight, lack of awareness of cause and effect and an inability to self soothe, growing up is hard, and functioning in the world is confusing.
Raizel wants nothing more than to be in yeshiva, participate in summer programs and follow the conventional path of the other children in the community. We are pained by our inability to find an affordable and appropriate yeshiva that will accept her for high school. For this reason, we recently made the difficult decision to withdraw her from yeshiva and put her back in public school. The summer camp, which has an inclusion program for children with special needs, is reluctant to take her back too. They are insisting that we participate in intensive therapy first. And, if the therapy is insufficient, then what?
As her mother, this is very painful. More than anything, I want my children to have a sense of place in this world. I want my daughters to feel connected and cared about by the community. If Raizel is socially ostracized, and unwelcome in the schools and camps, how can she have a solid identity and a sense of belonging? Is Raizel more likely to be accepted outside the community than from within? Are my wants unrealistic?
Other people’s children grow up and become more independent. The path of my children is different. Over time, I see that the gap between my children’s growth and development is getting wider compared to their neuro-typical peers. It is a daily disciple to readjust my expectations and increase my acceptance.
I want so much to prevent pain and suffering for my daughters. And yet, I cannot. Every day, I must remind myself that that God, in His infinite wisdom has a plan for my daughters that is good and better than anything I could imagine. I am not in charge. It is a daily process of letting go of expectations, surrendering to what is and trusting in a benevolent universe.