Article By Ethan Nahté
Photos by Ariel Varner
A little over two years ago, I met a gangly, quiet and shy girl about to turn 8, and her little sister, who was somewhere between a toddler and preschooler and has seemingly never met a stranger. Daisy is the younger of the two, and Soni (pronounced Sunny) Propst is her sister.
Daisy stood a very big chance of being an only-child. There is a laundry list of health issues Soni had been diagnosed with.
Her mother, Ariel Varner, said, “Autism is the first one, ADHD, sensory integration disorder, eczema, asthma allergies as in food and kitties. She’s got 38 foods she’s allergic to and 29 elements that she’s allergic to. She is deaf in her left ear from all of the ear infections. She’s had three sets of tubes (in her ear). She’s had her tonsils and adenoids taken out.”
Sensory integration disorder (SID – not to be confused with SIDS) is where your senses are hyper-sensitive: ears, skin, light, smells, sound and taste. She has food aversions if certain foods have certain textures. If a food is the wrong texture, “it’s instant puke,” in her mom’s words.
“Soni also has sensitivity issues such as clothing. If it is not the right texture, she will literally have a heart attack,” Varner said. “If it pulls on her skin… she has severe uncontrolled eczema. This is not [the type] you put lotion on and it goes away. She is on steroids every day of her life. She has to put steroid cream on her body every single day because her skin peels and it actually bleeds. If her clothing hangs on her eczema skin, she can’t handle it. With her sensory integration disorder, if something is not correct with her senses, she cannot pay attention to you. So that, on top of the ADHD, she’s very squirrelly. Everything is a distraction because everything has sensory overload. She wears protective ear gear. We call them her ‘ears’ and say ‘let me put your ears on.'”
Soni will wear the ears during loud events such as watching fireworks from a distance while sitting in a vehicle with the windows up, but there are days she’ll be in a room coloring, drawing or creating one of her books and have the ears on to block out extraneous sounds, even when her surroundings are not that noisy.
She is high-functioning autistic, but she is socially challenged. At one time, when a person had difficulty relating to others socially, showed repetitive behavior, and had a narrow range of interest, they may have been diagnosed with Asperger’s Syndrome. The name has officially changed and is now included in a condition called Autism Spectrum Disorder (ASD).
Unlocking the brain
What does being on the spectrum mean?
“You’re on a scale, and she is on a higher scale of functioning because she speaks,” Varner said. “She didn’t speak until she was 6. She’s intellectually behind with her autism. She does everything quite a few years behind. Right now, she is in the fourth grade but she’s performing at a second-grade level.
“At the age of 6, she was diagnosed with ADHD, which we didn’t know because autism and ADHD look a lot alike in girls, not boys. When we found out she had ADHD, they put her on a newer drug (at that time) called Focalin.”
The medication is a stimulant that works by changing the amounts of certain natural substances in the brain. Focalin can, in part, help increase the ability to stay focused, pay attention, and control behavioral problems.
“When they put Soni on the Focalin, she started speaking in full sentences almost instantly. It wasn’t like she didn’t know how to talk. It was there in her mind, but it wouldn’t come out. The doctor told me when we found out she had ADHD it was like the movie, the classic cartoon “Alice in Wonderland.” When Alice is looking at herself through the keyhole, she can see herself and she’s beating on the door, and saying ‘Alice, wake up, wake up.’
“That’s what happened, and the Focalin unlocked her speech, which is very rare because most kids have to learn how to speak at that age if they hadn’t been speaking. Within two weeks of taking the Focalin, she began speaking in complete sentences. That unlocked whatever was blocking her from speaking.
“The ADHD actually came in really handy in that we found out that she had that and not just the autism, because it solved a lot of the problems. We could figure things out after that.
ASD testing
Varner said, “Soni was one of the youngest female children to be deemed autistic in Arkansas. She was 3 years old when they told her that she was autistic. That’s very young for a girl — for any kid.”
Trying to determine what is wrong with your child, especially one who was not speaking, can be difficult. There’s worrying, but some parents also have difficulty accepting that their child may be seriously ill, and the child cannot give a clue as to what is wrong.
“She would do a whole bunch of noises. She would point and [make] noise, point and noise. She did a lot of rocking. She held her ears. She didn’t want to walk on her two feet. She would run like a horse on all fours, and then she would make noises like animals — perfect noises, perfect horse, bird, dog and cat noises, but she would not speak. Those were the signs that we found out that she had autism.”
Soni remembers making the noises and running around on all fours. She still does those on occasion, such as her 10th birthday party as she, her family and friends were having fun.
When it comes to the period of not being able to talk or being frustrated about it, Soni said, “No, I do not remember that.”
“I remember her pointing and screaming because she couldn’t get the words out,” her mother said.
There are still times Soni will go into a quiet mode. She said, “Sometimes I don’t want to talk at all. I’m just nervous or shy or tired.”
For instance, there was a time when the first week of school began and she did not communicate. The teacher did not know if Soni was comprehending what she was being told. Her mother received a call and was asked if Soni was from another country and English was her second language.
“That just how it is sometimes,” Soni said. “I just don’t like to talk.
“A lot of times when I don’t talk, I am usually daydreaming. I like to daydream a lot. If there is a book I’m reading, sometimes I daydream about that. It’s actually really good, because it looks real.”
At other times, she still finds it difficult to concentrate, missing some of the information or directions her teachers may be talking about. According to Soni, she especially zones out when she’s bored, the result being she resorts to daydreaming again. Then again, who of us hasn’t done that in either a class or meeting?
Creative side
Many times, when the children visit the Pulse office, Soni and Daisy are always coloring and drawing. Soni will create her own images or make up stories using recycled office paper, complete with art, and turn it into a miniature book. She seemingly does that more often than working in a traditional coloring book like her sister.
“I just think of something then I just write it down without thinking about it, and I really do like art.”
She doesn’t believe when she gets older that she’d like pursuing art in school. She currently would like to work with her papaw Rod Varner, who has Rodo’s Cycle Center in Mena.
“If I don’t do that, I’ll probably be making my own history about me being an animal rescuer. I’ve always wanted to be one. People rescue animals and help find them a home and a happy life. I’ve always wanted to do that.”
Despite some of her allergies, her animal rescue list includes dogs, cats, big cats, big dogs and wolves, tigers… maybe even a cheetah.
As Soni sneezes multiple times, her mom said, “Anytime in the morning when you want to know when Soni’s awake, every single morning she sneezes six times. It’s been that way ever since she was an infant.”
Other things she enjoys includes, Varner said, “She likes video games, she writes actual books, and she illustrates every single one of them on her own.”
She really loves dragons, but she’s now into the bigger cats such as clouded leopards.
“She was more into mythical animals at first, but it’s more of the real animals now. Even her stuffed animals have to be real. They can’t be pink and green or things like that. If there’s one, there has to be a mom, dad and babies. It has to be a family. She’s very into real animals and their families.”
Her newest literary creation is “Foxy, Will You Be My Valentine.” She gives a reading of the story and shows me the pictures after the interview concludes.
Autism days
“We have what we call autism days, where she has days that she just can’t,” Varner said. “It doesn’t happen very often. Maybe about once a month she has these days and she’ll just wake up and cry and cry. She’ll say, ‘Mom, I just can’t today.’ She’ll stay home, and she’s covered with that with her 504 Plan.”
A 504 Plan is a federal civil rights law that protects individuals with disabilities from discrimination. A 504 Plan can help students with learning issues, attention issues, and other disabilities who meet certain criteria access the general education classroom without any barriers. The process requires a lot of information, referrals, evaluation, eligibility, review and reevaluation to determine if an individual qualifies.
If so, then a plan is developed to ensure what the school provides as compared to students without disabilities. Then they target supports to the student’s needs, notify and train persons with implementation responsibilities and provide the parents a copy of the plan and a Notice of Rights.
Varner continued, “If she has an unexcused absence, it’s okay, because they expect that with autism and ADHD. She’s always telling me, ‘My legs hurt.'”
“It’s my legs, my arms — everything,” Soni said.
“She’ll have days where she just hurts all over,” Varner said.
“A lot of times it’s my feet,” Soni said. “They hurt and I don’t want to walk.” She describes the pain as if there is a lot of weight on top of her feet.
“She’ll tell me some days that she can’t walk. On those days, we try not to leave the house. Or, if she has to come to work with me, she won’t wear shoes. She will actually limp all day long.”
Soni is tall for her age. According to the CDC calculator, she is around the 96th percentile for American females at an even 5 feet, and the 89th percentile for weight at 100 pounds. She falls into the 80th percentile for her BMI, putting her at a healthy weight. She and her mother are told a lot that it’s growing pains.
“I also think your mind has a lot to deal with how your body feels,” Varner said. “Sometimes, you know, her mind is not minding right now.”
When Soni is hurting and it feels as if weights are putting pressure on her, not only her feet, but legs, hands and arms, water seems to help. Perhaps it’s the buoyancy and relief of pressure on the extremities.
“Water is the best thing. In the summertime we go swimming. If it’s not summertime, I put her in a shower and I tell everybody do not turn on the hot water anywhere else in the house, and she’ll take a shower for like an hour. She’ll just sit there and let the water just run over her. Water really helps.”
Soni’s severe uncontrolled eczema, aka severe uncontrolled atopic dermatitis, can have enduring quality of life impacts according to the National Center for Biotechnology Information (NCBI). It can affect daily functioning, academics, career, family and social life, and mental health. It can affect sleep, cause depression, anxiety and more. Early effects on sleep and school performance along with the impact on social connections, likely contribute to weaker career opportunities and further isolation with age.
“Water actually helps with her eczema, too,” Varner said. “After her skin gets wet, I can put her steroid cream on, and it holds it in better that way.”
With the relief water brings and the fact that eczema is not contagious, the family seeks out any kind of water therapy they can get: a hot tub, swimming pool or lake. What works the best is saltwater. They visit Florida at least twice per year.
“I let her just be in the ocean and that really helps her as well. We do Epsom salt every single time she takes a bath, but it’s not the same as ocean water. It just does the trick.”
There are times when Soni, like most children, doesn’t like being told what to do. Soni’s issue with authority is more than just a phase. Varner said, “When she’s rebellious, that’s something that we struggle with a lot. There’s something called oppositional defiant disorder that they deemed her with when she was younger. If someone tells you what to do, you will do exactly opposite of that.”
According to the Mayo Clinic, even the best-behaved children can be difficult and challenging at times. But oppositional defiant disorder (ODD) includes a frequent and ongoing pattern of anger, irritability, arguing and defiance toward parents and other authority figures. ODD also includes being spiteful and seeking revenge, a behavior called vindictiveness.
“I have always struggled with her — everybody — if she’s told what to do, she will do the opposite most of the time. She’s come out of that in her later years. but she’s still rebellious.
There are other problems that arise from her various conditions.
“She doesn’t like to do really long car rides. She gets antsy.
“She doesn’t like loud noises.”
Too many people at the same time is a lot, or if there is a lot going on it tends to overstimulate her senses. She’ll typically withdraw into her shell and not speak.
“Overall, she’s a pretty good kid,” her mom said. “She’s very much herself. I don’t ever try to stop her from being her. She’s very quirky, she’s different, she’s loud and she’s a lot of fun. I don’t try to make her anything that she’s not. We know she has autism, allergies, ADHD and eczema, and all these things, but she’s still Soni. That’s important.”
Social interaction
Due to some of her own social skills issues, and the fact other kids may not really understand all of the various things going on with Soni, friendship and the school environment can be a challenge at times. She’s particular about who she wants to befriend, but she still finds it difficult to interact and forge a friendship. Discussing how hard it is makes her a little sad as she attempts to answer the question.
At times, it results in being bullied or teased. “Sometimes they’re really mean to me.” She gives examples of students kicking things away from her or taking things away. Some taunt her with rude questions over and over.
When they are mean, Soni perceives that they really mean it and it’s not just playful teasing. As she puts it, they think she’s weird. Other times, she might want to be friends with someone, but they won’t talk to her.
Then there’s home life with her nana, grandmother, mom and her sister. The two girls get along like many siblings do with a hot/cold relationship. The example Soni gives to how they relate, “About as well as a bug and a spider get along.”
The two do argue as siblings tend to do. Daisy constantly pretends she is a Disney princess, loves unicorns and the color pink. Soni hates pink and she prefers realistic animals… and dragons.
“I like darker colors. Right now, my favorite color is black.”
But there are plenty of times the two get along, including Soni teaching Daisy how to ride a bicycle without training wheels. The joyful look on their faces in videos and photos says it all.
They have also fallen in love with raising chickens and rabbits. The 2023 Polk County Fair was their first year of entering their menagerie of poultry and rabbits. They each took home seven ribbons.
“The best thing that me and Daisy does is I get to boss her around,” Soni said.
“They go out together and let their chickens out every day,” their mom said. “They carry each one of them around like a purse, literally, and give each chicken attention. They put them in their arms, and they make sure every one of their chickens is told that they’re loved and that they’re pretty. My kids give the individual chickens attention every single day. When they open [the coops], they check for eggs. Soni has shown her how to take care of those chickens like they’re babies.”
They currently have 10 chickens of various breeds. The rabbits are little more feral, but they take care of them as well.
The family has recently had a scare involving Daisy. After an emergency hospital trip and testing, she was diagnosed with Type 1 diabetes. It’s been a stressful time for the family, including upsetting regular routines. It’s a confusing time for Soni as she tries learning to cope with it, as well as trying to help her little sister.
“It’s like a crocodile came in the house,” Soni stated with her perplexing answer. “It was surprising. Like, who would know a crocodile would come in the house?” she asks, as Daisy normally had two speeds before the hospital — go and stop. Having something wrong enough that it put her in the hospital was as shocking as a crocodile. Soni admitted, “It makes me upset and sad. I’m upset because I don’t get as much attention.”
“Soni’s always been very attention seeking. Always has been,” her mom said. “She’s very jealous, even if it’s bad attention, she doesn’t care as long as she gets attention. A lot of kids with ADHD require a lot of attention and they don’t care if it’s good or bad.”
Varner added, “When Daisy has to get her blood sugar checked, Soni keeps Daisy very calm, which is very sweet and that doesn’t happen very often. She really is the big sister in that case.”
When fantasy becomes reality
Something relatively new for Soni is a problem with Alice in Wonderland. Not the stories or films, but a syndrome that has Soni possibly fighting her own jabberwocky of sorts.
She has something called Alice in Wonderland syndrome (AIWS). According NCBI, AIWS is a rare neurological manifestation. It describes a set of symptoms with alteration of body image. An alteration of visual perception is found in the way that the sizes of body parts or sizes of external objects are perceived incorrectly. The most common perceptions are at night. The causes for AIWS are still not known exactly. Typical migraine, temporal lobe epilepsy, brain tumors, psychoactive drugs to Epstein-barr-virus infections are causes of AIWS. AIWS has no proven, effective treatment. The treatment plan consists of migraine prophylaxis and migraine diet. Chronic cases of AIWS do exist.
Varner said, “It comes and goes, especially during stressful times in her life. She will go to sleep at night, like normal, but she wakes up and she’ll scream, ‘My hands are too big! My head’s too big! My feet are too big! Let’s go to war!’ She’ll run up and down the hallway and she’s going to war with I don’t know what.
“After the doctor told me, I thought he was crazy, and it was the weirdest thing ever. But if you look it up it says that you wake up, but you’re not really in reality, but you’re not really dreaming.”
Symptoms include the feeling that one’s head, hands, or feet are too big for one’s body. There is also the feeling like one is in fight or flight mode.
“You’re running from something. You’re running to something. With her, she goes to war. It interrupts her sleep, but she doesn’t know that she’s awake, either. AIWS is very disturbing.
“This is the thing I wonder about. She didn’t sleep through the night until she was 8. She did not sleep through the night as an infant, toddler, or in elementary school. We didn’t start having full night’s sleep until two years ago.
“When AIWS started a year ago, we had only had a year of sleeping through nights. This started up and she’s just never slept.
“Another thing with AIWS is things are either going really fast or they’re in slow motion. There’s no snapping out of it. It runs its course and then she goes back to sleep. The next day she doesn’t remember it.”
Soni also has short-term memory. Her family calls it Dory syndrome (not officially recognized by the medical community) as in the animated Disney character. Soni calls it her only weakness.
“I don’t know why she has short-term memory loss,” Varner said. “She’s been on allergy medicine since she was old enough to take liquid medication. Some of the doctors have told me that allergy medicine over long periods of time can cause short-term memory loss, but also it can come with autism or ADHD. It could come from being sleep-deprived. She has always had really bad short-term memory loss.”
She just recently found out she has astigmatism in both eyes. She had just got her new rainbow-colored frames and glasses the day of the interview and was enjoying the way they looked on her.
Defying the odds
“When I was 16 weeks pregnant, the doctor told me that Soni had holes in her brain and her heart. They said she’d never make it to birth. When I found out I was pregnant, she was a tubal baby.”
Also known as an ectopic pregnancy, the condition can lead to bleeding in the mother and is life-threatening, not to mention the dangers for the embryo. Generally, it requires surgery.
“They at five weeks straight up told me that she’d never live. Within two hours of them telling me that, she had moved from my tube to my uterus. I had to have surgery to remove a cyst the size of a softball. She lived through the surgery.”
At 16 weeks, in addition to the shocking news about the holes in the brain and heart, they also diagnosed her as positive with Down syndrome.
The days and weeks passed, leaving the first-time mom-to-be worried and very scared. The average gestation period for women is 40 weeks. A baby arriving a week or two early or late is not uncommon, but with all of the bad news Varner had been given, it just added to her stress.
“I was 42 weeks pregnant with her. She came out sunny side up. She was blue and gray. She had swallowed what she wasn’t supposed to swallow, so they didn’t think she’d live past 24 hours.
“They had told me that she wouldn’t live since I was five weeks pregnant. She’s 10-years-old and thriving,” Varner said with tears in her eyes. “She didn’t speak until she was 6. She was in Children’s Hospital for three years of her life. She’s had C. diff three times. She has died in my arms twice.
“She’s supposed to be here… and you can’t tell me she’s not. I have fought for her life since I was five weeks pregnant. She has gone through hell, and she has returned victorious. I expect great things out of this child.”
Although she still has a cornucopia of maladies, Soni has been defiant against all life has thrown at her thus far. Then again, so has her mom. Maybe the apple didn’t fall too far from the tree.
When she’s old enough, Soni wants to travel the world and live in Canada. She wants to travel somewhere different all the time and rescue animals all over the world.
The Golden Rule
There are certainly children who do not know how to act or interact with someone that may have some form of disability. There are kids who may not know to ask what it is they may perceive as abnormal.
For that matter, there are adults who fall into the same categories. To those who taunt, bully, or even ignore someone they feel is different or weird, Soni has what should be a simple and attainable solution.
“If you want people to be kind to you, be kind to them.”
For all of the bullies out there, she added, “Bullying is not good because somebody could bully you. Treat other people how you want to be treated.”
That may not be an exact quote, but it’s alright if it’s a little different.
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