This is part of a series of essays in honor of Jewish Disability Awareness, Acceptance and Inclusion Month.
When we choose to become parents, we choose to be challenged. Sometimes more, sometimes less, we mothers and fathers are always navigating between the loving closeness we want with our children and the distance or discipline we may need to impose to teach a life lesson. We can feel torn between empathy for our child’s emotions or situation, while also realizing that we must step back and allow them the opportunity to learn and gain experience that will benefit them as they move forward into their future without us.
If our child has special needs, however, we may become confused about what our key job as parent actually is. Depending on the extent or nature of our child’s disability, we may shift out of our accepting, relationship-based guidance and modeling roles, perhaps delegating those responsibilities almost completely to therapists, educators or health professionals, and move more into a protective and hyper-controlling “Mama Grizzly” mode. Painfully aware and worried that we live in a world that is often unkind to people who are different and vulnerable, we parents often compensate by going into a “Cure my kid, fix this situation, change what is” fear mindset. We can feel like it is a matter of life and death for our special needs children to appear and to behave like “normal” and compliant kids according to a rigid set of rules and assumptions. We are desperate to feel like we are doing this parenting thing the “right” way.
My younger son, Ethan, has severe autism. He is minimally verbal and has unregulated behaviors, such as meltdowns, when he faces an unexpected transition or otherwise becomes overwhelmed. He is now 14, and yet his demeanor is that of a much younger child. On the surface, Ethan often seems like he is not paying attention to the people around him or to his surroundings. He does not appear to understand much of what is said to him, and it would be easy to conclude that he is cognitively impaired. However, through some special assistive communication techniques, Ethan has found his voice. He has exhibited a profound intellect as well as an extraordinary connection and appreciation of God: “God is in my heart and will always protect me”. During one particularly powerful conversation in which he typed his responses to my spoken questions, Ethan told me that he had chosen to come into this life with many challenges. “Why?” I asked. “I will be greatly rewarded in eternity.” I asked him my most pressing question about how to parent him: “What can we do to help you on this journey?” He replied, “I have to fulfill my journey as prescribed by God.” Still not satisfied, I asked my “How” question again: “But what can we do to help you?” Ethan’s response: “You just have to love me and that is your job. The rest is my job to do.”
“You just have to love me….” Not change him, not turn him into someone he’s not, not take away his ability to be master over his own life—just love and accept him for the amazing, perfectly imperfect human being he is. Of course, we parents must guide and teach and protect our children—but we cannot live their lives for them. We must model unconditional love for ourselves and for others, recognizing that every person walks their own individual soul-path. Our special children must know that we are here for them, through the best and the hardest of challenges and circumstances, for all eternity (just as God reminded us through his Name that He is always here for us—“I am that I am”). In that loving purpose and intention to help our sons and daughters fulfill their potential to the best of their ability, no matter what that looks like, we can know in our deepest hearts that we are being the parents our kids need us to be. When acting from love, there are no mistakes—only learning. Parents, you have your job.