Last week the world celebrated World Autism Awareness Day (WAAD), a day that aimed to put a spotlight on the hurdles that people with autism, and others living with autism, face every day.
It seems like each day there are new discoveries and advancements in the world of autism, but for those living it, it can be challenging, discouraging, exciting, and beautiful.
As a growing global health issue owing to its increasing exposure in the press and common knowledge, autism is an issue that is only gaining more understanding, and WAAD activities are planned every year to further increase and develop world knowledge of those who have autism spectrum disorder (ASD).
People with autism tend to get the bulk of the attention on WAAD, but there are heroes in this cause that are walking around in plain clothes that most of us don’t realize.
These people are parents and caretakers to those with ASD.
Krista Wenzel, a Silver Valley resident, is one of those heroes.
Krista’s 5-year-old daughter, Ellie, has autism, but it hasn’t defeated her or her mom. In fact it has strengthened the bond between mother and daughter while giving Krista an even higher purpose than just being a mother.
Ellie’s diagnosis came a little over two years ago, changing the trajectory of their lives forever, but their powerful story began before Ellie was even born.
“I didn't think I would ever get the chance to be a mother,” Krista said. “I found out I was pregnant with Ellie when I went in to get surgery done for my leg when I had cancer. It was like my 33rd surgery with this surgeon, so I knew him really well and I thought he was joking when he said, ‘no we can't do your surgery today because you are pregnant.’ It was April 6th, so I thought he was April fooling me. They had told me I couldn't have kids due to how much chemo and everything I went through so I wrote off having kids.”
Ellie is what is considered a level 3 on the autism spectrum.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM), those with level 3 autism are classified as suffering from severe deficits in verbal and nonverbal social communication skills that cause impairments in functioning, very limited initiation of social interactions and minimal response to social overtures from others.
For example, this would be a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres.
While that can seem frightening to just about anyone, Krista has approached her new reality with a sense of grace and realism.
“Yes sometimes Ellie has meltdowns and they can be horrific and embarrassing out in public,” Wenzel said. “But I know I have also seen some completely healthy atypical people act the same way, so if a situation like that occurs with an autistic adult or a child, just give them space and move along or ask them if they need help.”
Krista has brought a voice to her daughter that she wouldn’t have otherwise, both figuratively and quite literally.
“Some people with autism don't have a voice, they are nonverbal like Ellie and I have to be that voice, that advocate for her so she can have a equal education and equal opportunities as any other child her age,” Krista said. “People tend to leave kids like her or even adults out of things or conversations because they just don't have the patience to hear what they have to say. But it the most amazing thing to see a child or adult with autism open up and let people in. It takes compassion and patience, love and understanding, and sometimes lots of tears but for me as a parent of an autistic daughter, it is the most benefiting thing to see her communicate with people and seeing their acceptance and giving her time and space so she has that chance to have a voice in all things she does.”
Krista and Ellie spend a lot of their time in various therapies and support groups, each one serving an important role in what has become the new normal for both of them.
Speech, occupational therapy, habilitative therapy and various support groups with other parents allow for Krista and Ellie to learn new ways to overcome obstacles and also network with like-minded people.
For the parents who devote their lives to making a life for their dependant children, these meetings can serve as a way to find out just what helps keep those parents going.
“Everyday is a learning experience since they don't have a pamphlet on how to's for raising a child with severe autism,” Krista said. “Most parents with kids like Ellie have to use some kind of sleep aid or depend on coffee to keep us going during the night when we can’t get them to sleep. We sometimes have to use natural supplements or even medication on occasion for the nights when we are up until 4 a.m., which sounds pretty normal as a parent but I'm talking long-term. Here she's five years old and this is almost a day-to-day basis, so that newborn, never getting any sleep thing where you feel like a zombie … multiply that by 10 for a parent of a child or adult with autism.”
Those are all just parts of the sacrifice Krista has, and will continue to endure, for the sake of her child. But it can be more than just a few sleepless nights, sometimes it means sacrificing things that you wouldn’t think would be an obstacle.
“Sometimes it gets rough and it feels hopeless and you wish you could go to that family barbecue or an Easter egg hunt at a friend's house, but you just have to do what's best for your child,” Krista said. “Sometimes that's taking them just to swing at a park so you can feel that split second of peace that they are happy and you can see the joy that in the world of autism is few and far between. The world wasn’t made for a person with autism, so families like mine have to adapt and do the best we can to make it the best life we can for our kids.”
Each day brings a new adventure for Krista and Ellie, but Krista embraces her daughter as the miracle that she is and wouldn’t trade any of it for the world.
“Ellie was my chance to be a mother, so I took my chance and said, ‘here it goes.’ Just being Ellie’s mom gave me a higher purpose in life, because I didn't think I could ever have a family — and yes, she is different than your atypical 5-year-old, but she is my whole world and for some reason I got lucky enough to be her mom.”