Parenting Podcast: Being a Parent of a Child with Special Needs – My Feelings and My Actions



Parenting Podcastby Shelly Christensen, MA

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.

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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.

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9 Responses to “Parenting Podcast: Being a Parent of a Child with Special Needs – My Feelings and My Actions”

  1. avatar

    Fortunately we had a very different experience in the Jewish community. Our son now 20 was in the JCC childcare p-rogram from 2 to when he became a FIT. Patient caring & supportive do not begin to describe the JCC & our rabbi. We did have our battles with the public schhol system. A bright quirky adhd bipolar leftist Jewish kid does not fit in with a one size fits all school system

  2. avatar

    What Shelly Cristensen and Bill said prompted my comment. There are federal educational laws that provide for children in school with a diagnosis of a disability. An IEP or Individual Education Plan in a conference with the principal of the school, a school psychologist and sometimes a teacher. It is brainstorming and then committing to writing upon the parent-advocate or her representative what is requested as part of the plan. Also, upon the parents’ request a pamphlet is provided by the school delineating the parents’ rights.
    I suggest that a parent never go alone to an IEP meeting, even if they bring a friend or advocat. Also, remember to set a followup appointment to determine the progress the child and school system has made in the interim, if any. There are ADHD resources for ADHD at http://www.CHADD.org and http://www.adhdcoaches.org.
    Warren Simonoff, ACG
    Professional ADHD Coach

  3. avatar

    Just wondering if Jacob found a place within the Jewish community?

  4. avatar

    Warren, the Federal laws generally do not apply in private schools. Jewish schools are private schools and provide help for kids with special needs at their whims…..without some of the alleged safeguards in the public schools.
    I have personally been told that alone, I outnumber any size school IEP team…..of course i am an Aspie, an attorney, damn stubborn, and a good researcher and writer, so maybe I do have an advantage…..but it is pretty hard to respond or require action, if , as the Jewish school in Minneapolis did, they fail to return your call.
    I have had a similar experience with my child who has a fruit salad of physical and other issues. In religious organizations it is often the parent who provides everything for their kid, and is viewed as disruptive to the status quo if they either don’t have the energy to do this or don’t want to….
    And, I have found that you have to be careful what advocate you bring, as a bad advocate is worse than none. Example: the “advocate” from PACER Center who told me “the school is only required to provide a free and appropriate education – not the best one for your child.” I pointed out that if *I* was part of the team then it stood to reason I would have to agree to the program….and that if that was her idea (that the school defined appropriateness) I’d be better off without her or her highly-paid-and-jointly-funded-at-times-with-school-districts agency, and have been going it alone ever since. Except when I go along with others to advocate for them.
    Jane – Apergerwoman, Attorney, Advocate, Parent, and Artist

  5. avatar

    Such a powerful story. I am grateful to you for sharing it.
    This experience has too often been the case across faith groups. But things are changing.
    I recently spoke at a Christian High school which for its entire existence, 20+ years, has not taken students with disabilities. Six years ago as an invited chapel speaker, I chided them about this oversight. But this Fall, they have the first special ed class! When these break throughs occur, we need to really go out of our way to point them out, praise those behind them, and support them in whatever way we can.
    Because of people like you and your work, Shelly, our communities are changing. Changing to be more obedient, I would argue, to our call as people of faith.

  6. avatar

    It’s so sad to hear stories like that–cases of insufficient support. I have a very different story–I have been the beneficiary (and victim) of over-zealous support. I had a rough early childhood because of various differences and difficulties surrounding NLD/AS. Soon after an official “asperger’s” diagnosis, I was flooded with support and an IEP. However, over the next few years I overcame many of the difficulties and did some serious maturing. By high school, I was outwardly neurotypical, but was suffocated with stifling “support” and condescending treatment from teachers and para-professionals who refused to speak to me as an intelligent adult. I was not the unfeeling, socially inappropriate robot described in the pages of the DSM-IV, but I was seen as my diagnosis rather than as an individual person. The Jewish community behaved similarly, and I had many embarrassing experiences of people talking to me in public as if I were some “problem child”. They just didn’t get it.
    I was not treated the way I feel I should be treated until starting college, and now, God-willing, I will take what I’ve learned by being “different” and apply it to the sacred task of pastoral care in the context of a Rabbinic vocation. I know that you have to assume that you can talk to people in a normal way until it is proven otherwise–you have to talk to people with recognition of their dignity and worth b’tzelem Elohim.

  7. avatar

    This is a deeply moving story, with terrible disappointment and sadness (lightened with a dash of humor), followed by determination and hope. Your resilience in the face of so much negativity and rejection speaks well of your character – and of the values you instilled in your son. May all Jewish parents feel embraced by their synagogues at this point, and forever more.

  8. avatar
    Shelly Christensen Reply October 12, 2011 at 12:11 pm

    Cyndi L. Jacob was embraced by our synagogue wholeheartedly. In fact, it was his kindergarten religious school teacher who told me that he was gifted. I was stunned, thinking only of the things we’d heard at his public school conference. But she was right–Jacob is gifted as is everyone we meet.
    Individual giftedness. Jake celebrated his Bar Mitzvah (in spite of the attempts to helicopter his tutoring lessons–I was expelled by his tutor!)He celebrated confirmation, attended the Religious Action Center L’Taken program and lobbied on Capitol Hill. He has spoken at the Religious Action Center as a self-advocate, and last December he joined other young adults with Asperger syndrome on a life-changing Birthright trip to Israel. He was also stranded at JFK for a bonus 5 days of his trip. So yes. Just like with educational settings, parents are consumers of synagogues and schools and it’s incumbent upon them to seek out alternatives with the hope that they will connect with kindred souls.

  9. avatar

    Dear Shelly,
    Thank you for the heartfelt personal sharing about your journey with your son, his schools and the Jewish community. I wonder what the response would be from the same day school today – things have changed for the better, though we have so much more to do…
    I am the step-mother of a son who was held back in Kindergarten. IEP’s and testing did not illuminate all of the challenges, and most teachers were not compliant in the public schools he attended in Baltimore County in the 80′s. Teachers passed him along until he hit a wall in 8th grade, and it looked like high school graduation was a remote dream. But here and there, special and very caring teachers and school leaders made a difference in his life, and my husband and I never gave up working with those we could, pushing and advocating for our son and his future against a system that served too many with too few resources.
    Perseverance and courage on his part won the day, and he is a college grad with a job and is soon to be married.
    Yes, many things have changed for the better, and we know a whole lot more about learning and special needs…
    AND we still have a long way to go.
    Thank you for your leadership and sharing.

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