As we continue to weather the “shelter in place” order, I am reminded that my attitude has determined how I confronted past adversity and now the challenges that we are faced with today.
My self-isolation has given me space to reflect on the things I am grateful for by writing in my gratitude journal, but also this journal has given me the opportunity to write about things that make me angry, sad, worried or fearful.
I am grateful that I can write about what I perceive as being positive as well as negative. Writing down the negative has been almost more important than writing the positive because I am able to release those negative feelings, which have made room for more positive moments to come in my life.
One of my most positive moments recently has been a chance to interview Evangeline Iyemura. Evangeline is the mother of two children. Marlene is 25 years of age, and Evan is 15 and a sophomore in high school.
Evangeline’s journey began over a decade ago, when she discovered that her 2 1/2-year-old son was not progressing in his speech, exhibiting repetitive movements or not making eye contact. Was he deaf? No, testing ruled that out. And so Evangeline and her husband discovered that they had an autistic child.
Being Filipino and married to a Japanese man, Evangeline faced both judgment from the Japanese community and the Filipino community. People wondered if she vaccinated or failed to vaccinate Evan, and that caused his autism.
Then, people from the religious community wondered if this was God’s way of punishing her and the family for some wrongdoing. Finally, there were thoughts that ran through her mind such as … “I must have not taken care of myself or took something that caused this condition. Ironically, I had lost over 100 pounds before I had gotten pregnant, so I was in the best health at that time.”
But could that weight loss have affected her pregnancy? It seemed like everyone had an opinion, and this threw this mother into a minidepression. For many years, she did not talk about Evan’s autism. Now, Evangeline and Evan talk to large groups and share their story to hundreds.
Evangeline wisely turned to therapy to help her navigate this unknown path. She also said that there was a preschool teacher who cared about her son and showed him an immense amount of compassion.
Kindness coming from others often brings hope to us who feel judged. Evangeline found organizations that provided support and resources for autism. She also eventually discovered Autism Speaks, and with her family, participated in a walk with Evan when he was 5 years old.
The following year, she became a co-chair for the walk and has continued to chair this event since then.
Autism has a large spectrum. Evangeline remembers a college professor who was so smart, but rather quirky. He wore the same outfit every day. Some autistic individuals are highly functioning like her professor. Others struggle to care for themselves, and then there is everything in between.
I learned this can affect your child socially, physically, verbally and in many other ways. An autistic child can react to bright light and loud noises. People with autism also like routine and structure. They can become violent because they are overwhelmed by the world and its unpredictability.
Evangeline shares that autistic individuals and their families often feel like “community outcasts as people do not understand how to give compassion to those that are different.”
Evan can communicate in full sentences. He has the comprehension of about a 10- to 11-year-old. He can make his lunch, do his laundry, and Evangeline’s goal is that he can live as a functioning adult and hold down a job.
Fortunately, Evan has learned to cope with different emotions like anger. Evangeline says that “he is trying to control triggers that might spark frustration or be interpreted as anger.” And at 5’11,” his mother calls him a “gentle giant.”
When I asked Evangeline how she is doing during this Covid-19 crisis, she replied it has been hard. She and her husband still work. She is a hospital administrator. Evan told her that he was scared she would get sick and so would he. She has had to calm his fears, even as he struggles with routine and structure disappearing with school closed down.
Truthfully, when autistic children are in school, it is a mental break for the parents and caregivers, plus the structure and routine makes the children feel safe. In addition, Evangeline has an 84-year-old mother who she spends a great deal of time helping.
Fortunately, Evan’s older sister and her domestic partner, Chelsea, were down to visit from Canada and got caught up in the “shelter-in-place” order. Unable to return home, Marlene and Chelsea are helping to watch over Evan and keep him busy with dance parties, art projects (they are both in the art field) and supervising homework.
I asked Evangeline what she would like people to know. Her words resonated with me as the mother of a transgender son.
“You can’t judge a book by its cover,” she said. “Unless you have walked this road and know what it is like to be different, you just don’t know the daily fight Evan faces. Please just try to understand, have empathy and be kind. My son is not weak because he has autism, he must be stronger than other kids.”
As we closed our interview, I felt so honored to hear this mother’s story. Evangeline has embraced not only an autistic child and a queer child but also a child by domestic partnership who happens to have cerebral palsy. She looks at all of it as a blessing and a way that the world has helped her to understand what unconditional love truly is and can be. I applaud this mother and am so in awe of her vulnerability, her generosity and her unwavering love.
What the world needs now, is love sweet love,
It’s the only thing that there’s just too little of,
What the world needs now, is love sweet love,
No, not just for some but for everyone …
— Burt Bacharach
Marsha Aizumi is an advocate in the LGBT community and author of the book “Two Spirits, One Heart: A Mother, Her Transgender Son and Their Journey to Love and Acceptance.”