God’s Faithfulness: Lesson from the Spectrum in Serving Courageously Close to Home

God’s Faithfulness: Lesson from the Spectrum in Serving Courageously Close to Home

Being part of a Christian university reminds us how God works in higher educational settings. We need to Serve Courageously (part of GEIST) to provide opportunities for all students—whether in our classrooms or our own families.  

I remember the day I noticed my daughter was not like other children. She didn’t run around the play yard with that endless energy God gives the young. She didn’t ramble about every topic that flew through her head. She never bombarded me with the endless “but why mommy?” questions. She never talked about friends, what they did that day in preschool, favorite toys or colors. I didn’t know she had friends until a strange child ran up to us in the mall and hugged my daughter while talking a mile a minute. The child was unphased by my daughter’s lack of response or return of embrace.

I was a new mother, anxious, concerned and fearful of the unknown challenges ahead. Full of self-doubt and self-blame, I became increasingly frustrated as doctors told me “nothing is wrong” and “she will grow out of it” when deep in my gut I knew this was not true. I had a praying mother, who taught me to always pray before, during and after the crisis, so that is what I did.

Asperger syndrome (AS) is a form of high-functioning autism. Autism is a condition related to brain development that affects how a person perceives and interacts socially with others, often causing problems in socialization and communication. Asperger is a less severe form of the condition and has since been removed from the spectrum with the release of 2013 Diagnostic and Statistical Manual of Mental Disorders. In 2002 my daughter was almost three when she was diagnosed with Asperger syndrome. But God said:

“For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

At the time of her diagnosis, the Lord gave me a dream that brought me to tears. I saw my daughter speaking at a podium to an auditorium full of people. My child, who only communicated through echolalia: repeating noises and phrases. I went through a period of grief and believed in God. The next couple of years contained many challenges in learning about her condition and finding resources. Fast forward a decade, we were at a loss for how to further help our daughter. I’d been praying, and I must confess I was a little bit angry with God. He had shown me the impossible, when was he going to do it?

Then came my last day of full-time work in the intensive care unit (ICU) before transitioning into becoming a full-time nurse educator and staying per diem in the ICU. They gave me a nurse to orient. I was not exactly thrilled about it, because I had the most complex patient in the unit: on max life support, ventilator, a heart and lung bypass machine, and continuous renal replacement therapy. The supervisor probably gave me the trainee so I would have help, but my reluctance almost made me miss my blessing.

The trainee told me about her son who has autism, and a book someone shared with her that eventually led her to move to Fresno so she could place her son in a program called Brain Balance. I soon read Disconnected Kids by Robert Mellilo, M.D., and had my daughter in the same program. I can only say my cup ran over when my daughter came home after two weeks and hugged me for the first time.I was finally meeting her, learning who she was and what she was interested in. Every moment was precious—watching her praise dance to Tasha Cobbs’ “Break Every Chain” with the youth at our church, hearing her sing in the school choir and belt out Travis Greene’s, “You Made A Way” as she led worship, then seeing her at 18, standing at a podium, speaking to an auditorium of people about her life. To God be the glory because he is good and faithful!

I don’t have room to share all the lessons God taught me through this process. Here are a few tidbits to help you engage learners on the spectrum:

  1. Find a way through the communication barrier. The Brain Balance program teaches that impulses do not take the shortest path when firing in the brain of people like my daughter, and the program helped her build new pathways. It’s like a sent message takes the scenic route, and sometimes gets lost in the woods. Communication may mean repeating the same instruction a different way, providing a demonstration, giving one instruction at a time or writing instructions down so they can refer to the steps.
  2. Create space for them to process information. Enter conversations knowing it may take them more time to process what you have said. Confirm that the message sent has been received and that they understand.
  3. Correct socially disruptive behavior directly to prevent escalation. My daughter adheres strictly to the rules, and when she observed others not doing so she would physically and verbally lash out. Some may not perceive personal space in a traditionally socially acceptable way. Students on the spectrum may have different triggers, but not perceive their behavior as disruptive.
  4. Provide grace for their soothing behaviors if they are not disruptive. My child rocks, as if in a rocking chair, and I asked her why. She told me it calmed her down. I have also known her to step away from the room to have a moment of quiet.
  5. Finally, be curious. Every person on and off the spectrum is unique. You will find one technique works for one person and doesn’t work for another. Ask your student about themselves and their condition. Ask how you can best meet their learning needs and tap into the resources at the university to create those safe spaces.

Alexis Ramirez, DNP

Assistant Professor of Nursing