Parenting Podcast: Being a Parent of a Child with Special Needs – My Feelings and My Actions
In this week’s Jewish Parenting Podcast, Educational Consultant Lori Day touches on feelings parents have when their child is diagnosed with a special need and important actions parents can take to help their children. I wish I would have had a Lori on my team when my son was young!
Yesterday I was a guest speaker in the very same building where my journey as the parent of a child with a disability started. Identifying a brief rush of the feelings I had back then such as fear, anger and sadness helped me see how far we’ve come.
I saw the playground where Jacob was not allowed to go for recess. We learned this at our first conference. His teacher, a take-no-prisoners sort, decided to leave him alone in her classroom during recess as punishment for his behavior while the other kids went to play. The teacher seemed to relish reporting how bad our boy was acting in class. Not one positive comment crossed her stern and unforgiving lips.
After we left the conference I started to cry. If Jacob couldn’t cut it in kindergarten, then what would happen to him? Forget a college education; after the conference, my husband and I wondered if he’d make it to first grade!
The next day I called the Jewish day school in our community to inquire about admitting Jacob. I left them a voice message telling them about Jacob. Maybe I said too much. Twenty years later, I am still waiting for a call back. It seemed that the Jewish community didn’t want our son either.
Jacob remained in his public school. At my request the principal transferred him to a nurturing and caring teacher. Jacob was still undiagnosed with the ADHD and Asperger syndrome that have always been part of his life.
For a long time after the kindergarten fiasco, I was angry. I was angry at the teacher and at the Jewish day school. Mostly though, I was angry with God. I wondered why the God I knew as loving and compassionate would take away my child’s equal chance at life. While I was silently telling God what I thought about this, I also figured that there would be no place for Jacob in the Jewish community. I lost hope. I was devastated. I wanted to pack up my kid and go someplace where having a disability was unimportant and where children were cared for and loved just for who they are. Isn’t that what all parents want for their child?
I decided to take control of what I could. I learned about special education law and Jacob’s subsequent diagnoses. I talked with other parents who had children with disabilities. I evolved into Jacob’s advocate. I went from hopeless to hopeful when I saw Jacob succeeding on his own scale of success. Hope was based on the real kid, not the imagined child of my dreams. I wanted others to see what he could do, not what he couldn’t do.
Today, Jacob is a college senior attending a public university. He has held a part-time job for ten years, cares for his dogs, speaks his own mind and can take care of himself.
And me? I believe in Jacob with my whole heart. He’s just fine being Jacob.
Shelly Christensen, MA is a Co-Chair of the URJ Access to Lifelong Jewish Learning Task Force and CEO of Inclusion Innovations, LLC., Minnetonka, MN.