Bound to Succeed: Building Parent-Professional Collaboration
Receiving these calls on a regular basis from religious and public school teachers was predictable. The calls were never about something positive. They almost always focused on his classroom behavior. Jacob was never out of control. In fact, he used to read quietly during the first five minutes of class. Teachers always commented on this behavior. It just wasn’t acceptable. And as always, I would talk with Jacob about this and beg him not to read during class. Nonetheless, I always felt responsible for his behavior.
When Jacob was eight, he was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). The diagnosis changed when the DSM-IV included Asperger syndrome, a cousin of autism which causes sensory and social skills difficulties.
As parents we may acknowledge that having a disability isn’t fair. We grieve the child we hoped we’d raise, and somewhere within our behavior reflects the loss of control of our child’s life. Some parents lash out at professionals; others are passive; some seek answers wherever they can find them.
One Mrs. Christensen call was my epiphany. The middle school assistant principal called to tell me that they were going to punish Jacob for poking a hole in a concrete wall with a pencil. The school wanted to send Jacob to the bus garage in a taxi to clean buses with a toothbrush. (The absurdity of this still astounds me!)
I unleashed a barrage of angry words and insults, questioning how this punishment was going to provide Jacob with a free appropriate public education in the least restrictive environment, an entitlement under the Individuals with Disabilities Education Act, the law of the land for special education.
When I stopped yelling and hung up the phone, my office colleagues stood and applauded.
I felt no pride. I realized that my job as Jake’s parent was to work with school staff to understand how his disability impacted his educational life and to collaborate with them to achieve positive outcomes. Clearly, getting angry was not going to help Jacob succeed in school.
I turned my attention to learning what drives parents of children with disabilities to become so angry and frustrated. I wanted to understand my behavior. I discovered that many parents react in similar ways when they raise a child with special needs. Parents have their own needs on this journey. Once I understood my needs, the Mrs. Christensen calls stopped.
When a child is diagnosed with a disability, parents are thrust into a reality that is unexpected and uncertain. Dreams of a bar or bat mitzvah, college and standing under the chuppah one day play significantly into hopes and dreams for a child.
When a child does not fit that plan, parents experience the loss of those dreams. The sense of isolation, sadness, and uncertainty can be devastating. Many parents feel that control over the child’s life has been shifted to doctors, special educators and social workers, creating feelings of powerlessness.
The impact of professional partnership with parents on this journey is significant. The cornerstone of support you can provide is based on two things: understanding the needs that parents have when a child is diagnosed with a disability, and building a trusting relationship with them.
Ask parents to tell you their story. Building a strong trusting relationship is ultimately based on effective communication. Simply asking a parent about his or her child is very important. Your interest shows parents that you know there is more to the child than the disability and that you care. Understand the issues that many parents face. Those include:
Loss of dreams. Parents experience myriad emotions when a child is diagnosed. These emotions return at various transitions in the child’s life. Feelings of guilt, denial, anger and fear often keep a parent stuck on an emotional roller coaster. When we are stuck, we lash out at anyone who we can blame whether it is realistic or not. The loss of dreams, the loss of control and the uncertainty of the future underlie negative or difficult behavior. When parents ultimately understand that they can create new dreams based on the reality of their child, these feelings subside.
Immediate concerns. When Jacob was first diagnosed I worried about what I had done during my pregnancy that caused ADHD. We know now that genetic factors play an enormous role. After he was diagnosed I was unsure what I was supposed to do next. My roadmap was planned for a neurotypical Jacob, not a boy with a disability. I did not know where to turn even with a great sense of urgency to do something. We have not yet become experts in navigating the systems for special education, medical and insurance needs. We don’t even know what we don’t even know!
Parents’ Four Needs. While parents are consumed with caring for their child with a disability and their siblings, their own needs may go unrecognized. Identifying the need for information, social support, emotional support and making meaning are the very things that help parents navigate their journey with success. When parents recognize that caring for their own needs throughout the parenting years is vital, they begin to emerge from the unknown and learn to adapt to their new role.
- Information. Parents must learn about the diagnosis and what that may mean for their child. They must learn about the disability, educational options, medical and therapeutic choices and services that are available to their child. Parents can become familiar with government services and special education law. There are an overwhelming number of resources that can provide information. Sometimes, it is helpful for a parent to speak to another parent whose child has a similar disability and can relay information from their own experiences.
- Social. Following a diagnosis, the sense of isolation can be enormous. Parents must find ways to connect to others with whom they can trust to share their fears and anxieties. Extended family members, traditionally a source of support, may not be nearby to provide comfort, or they may be experiencing their own grief. Friends who have children with typical development may not understand. Just the very presence of those friends may be too painful for a parent of a newly diagnosed child. The overwhelming sense of responsibility to care for the child does not leave much time or energy to connect with the outside world. Sharing with another parent who has similar experiences can help.
- Emotional. Many emotions manifest in behaviors such as anger, isolation, sadness and hopelessness. Parents inevitably bargain with a higher power to fix the disability. When that bargaining goes unnoticed, when emotions overwhelm, parents may feel cloaked in depression. If the emotions impair daily functioning, parents should seek professional help to learn to manage their emotions. This kind of support can help them sort out their own feelings and begin to feel hopeful for their child.
- Making Meaning. As parents seek to find ways to deal with this unplanned journey, they will often ask “why me, why my child?” When that question goes unanswered, many parents begin to change the nature of their thinking. Instead of looking outside of themselves for answers, they begin to reflect on what their role can be as parent of a child with a disability. Making meaning of the journey does not mean that one knows why this has happened. It means that parents can take each day as it comes, knowing that others have been down the same road. Parents begin to adapt to their role as “parent of a child with a disability.”
Parents’ new hopes and dreams. Raising a child with a disability is part of the fabric that makes families unique. The hopefulness that became buried under the fallout from the diagnosis reemerges based on the knowledge that whatever lies ahead, parents have the confidence to move forward, often taking one step at a time.
Parents need trusted partners in order for collaboration to exist. Trusted professionals have qualities such as empathy, commitment, and the ability to listen. They let parents know that they care about the child and are willing and able to collaborate with them. Together, parents and professionals form a team that works together. The team focus should be on the child.
Parents are the constant in a child’s life after the school year ends. They provide information about the child and share their hopes and dreams. They are your equal partners in the collaborative effort to provide a meaningful and successful education for the student.
Begin the journey together by asking parents what their preference is for communicating with you. By agreeing how to communicate, everyone understands that communication is a critical part of the relationship. Agreeing on the “how” of communication ensures that there will be an ongoing dialogue of people who care about the student.
You don’t have to “fix” the child or the situation. Many caring professionals wanted to “fix” Jacob. The only problem with this thinking is that there was nothing to fix! This thinking creates conflict and diminishes the effectiveness of the collaboration. Parents and professionals must agree that the child needs supports and assistance to level the playing field to be successful. They must also agree that everyone on this collaborative team has a role to play.
Celebrate the successes together. Each team has the opportunity to celebrate each little step along the way. Once Jacob’s team was established, we communicated regularly. Each communication started out with a successful step. We had built a powerful team that supported Jacob’s success in school.
Jacob never did have to clean buses with a toothbrush. He graduated from religious school in tenth grade and at the age of 25 is fulfilling his dream of attending the University of Minnesota. Jacob recently participated in a Taglit-Birthright program for young adults with Asperger syndrome and spent ten days in Israel. He is living life on his terms with the support of his family and people who care about him.
And me? I’m no longer angry. I’m proud of how I have evolved so that I became aware of my own needs. I worked hard to understand them and meet them. There is no feeling more rewarding than seeing your child become as an independent adult who has his own hopes and dreams to realize. I will always feel gratitude for the many caring professionals on our journey. ♦
Shelly Christensen is Program Manager of the Jewish Community Inclusion Program for People with Disabilities at Jewish Family and Children’s Service of Minneapolis, Minnesota. She can be reached at email@example.com.