Ohanna

A special “Thank you!” to Ohanna’s mom Alma for doing this interview. Her desire is that by sharing the hardest parts of their family’s life, others can know they are not alone.

by Sara Raynor

Ohanna and Isabella are 10 year old twins. They have a 5 year old brother, Isaiah. They all live in Sutherlin with their parents, Alma and Christopher. Their aunt, Martina, lives with them and is also their DSP. 

The twins started showing some delays just after they reached 1 year old. By 3 they were in Early Intervention for speech and other services. They both started Head Start when they were 4, but then Ohanna started showing more symptoms. Sometimes she would leave her class, and frequently wouldn’t interact with other children. By the time she was 5, Ohanna was diagnosed with Autism and Intellectual Disability. She was held back a year in Kindergarten and placed in special education classes. Her sister Isabella also has some delays, but she is able to attend a mainstream classroom, and doesn’t experience as many challenges as Ohanna.

Ohanna has made progress in some areas, but last year she had so many unwanted behaviors in the classroom that she faced suspension. The school opted for Home Instruction due to concerns about the safety of the other students, and for Ohanna’s comfort and to help meet her sensory needs. The learning is condensed, but she was getting one-on-one instruction after school hours. This was easier for her because the noise of other students in the special education classes really upset her and distracted her from learning. 

The lockdown has been hard for the family. It has been almost a year since Ohanna has been in a class, and it is proving challenging for her and her mom. Ohanna struggles with sensory sensitivities and anxiety, to the point that when she surpasses her limit she will self-harm. Alma tries to protect the other children from the biggest meltdowns. Her triggers are noise and confusion, as well as being asked to do “school work”.  In recent months her self-harm has escalated from hitting herself in the legs, to hitting her own face. Alma does her best to keep her from hurting herself, and frequently ends up getting hurt in the struggle.  

Because noise and school work are a bad combination for Ohanna, the family has been working with the Sutherlin School District on other options. She was offered a place in the High School special education classes as soon as they open again, so Ohanna will be attending classes in smaller groups, with older, quieter children. Alma is optimistic that these classes will be a better fit. They will miss Ohanna’s teacher, Laura, who has been with her through her elementary years.

Ohanna loves drawing and painting. She doesn’t like the heat or being stuck indoors much, and finds cool water soothing, so her mom is glad that the rains are back. She also loves to ride her bicycle. When she grows up she wants to be a baker or a hairdresser, and Alma is committed to supporting her education as long as she needs to. 

When Alma went back to work, her sister, Martina, quit her job to work for RISE and be Ohanna’s DSP. Otherwise it has been hard for the family to find respite care. For many years they felt alone and isolated. They joined FEATT about three years ago. Alma said it is a huge relief to be able to go on a family outing with FEATT and not have to worry about Ohanna having a public meltdown. We may not spend a lot of time talking about all of our individual stories, but there is an understanding between parents. When you are at a FEATT event, you know that everyone has a story, and we don’t have the parents’ equivalent of “rose colored glasses” on. 

As Ohanna’s outbursts have gotten more intense, the family has learned from their primary doctor that the best thing to do when an older child has a violent meltdown is to take them to the Emergency Room. That is the only way to get them into a 72 hour psychiatric hold. Calling the police is not useful because they cannot arrest someone for self-harm. The Sutherlin Police were called one time and it wasn’t a particularly positive or useful experience, even though the officers did their best and called for Compass to come and help. 

Ohanna also finds it hard to express her emotions. Her mom says that when she was younger, she never cried. Fortunately, she has made some progress in that area. When she feels sad, she plays the video for the Katy Perry song, “Wide Awake” and it makes her cry. She seeks it out specifically to release that emotion. After an outburst, Ohanna does come and apologise to her parents. Alma assures Ohanna that mom isn’t mad, mom just wants her to be safe, and she is proud of Ohanna for learning to recognize and acknowledge her emotions.

Ohanna is a sweet child who seeks out hugs from people and loves to make them laugh. She doesn’t always know how to interact with other children, but she does want to. She likes to feel included, and she knows it when she is not. Alma wants her children to know that it’s ok to be different and that being unique is special. To Alma, one of the things that makes special needs children unique is that they don’t know how to put on a mask and fit in. If the rest of us can learn to put down our masks and live as openly as they do, we can help create a more inclusive world.