Dropping in on Autism: One Family’s Struggle with ASD & SPD

This post is very special to me. It’s about my best friend Paula and her two-year-old autistic daughter, Samantha. Complications with her insurance company have made it nearly impossible for Sam to get the treatment she needs. We have started a collection at gofundraiser to gather enough money to pay for these critical treatments. You can make a donation here; I assure you that every dollar counts.

Please, continue reading to learn more about the triumphs and struggles of this amazing family as they navigate through the difficult waters of autism spectrum disorder.  

Click Here to Donate: http://www.gofundme.com/atjnxg

A Recent Visit to Buckhorn Road

Even today, visiting my best friend Paula is like revisiting my childhood. She’s lived in the same split-level single family home with red brick exterior since I can remember. It’s 48 steps from my parking spot to her front door—and the moment I reach the front stoop, the door swings open and the nostalgic smell of my long-time best friend greets me.

Paula is standing in the doorway in a t-shirt and yoga pants, her long dark hair piled on top of her head and a warm smile on her face. She reaches out to hug me and asks how I’ve been. We take a moment to chat before she follows me up the long flight of stairs leading to the main level of the house. At the top of the stairs, I stop at the steel baby gate bolted to the wall. Paula tells me to move aside so she can unlock it; but I’m determined to figure it out this time.

I fumble with the latch for five minutes before losing my patience and lifting my leg to step over the gate. Paula grabs the back of my pants, pulling me back to the top step. She reminds me that I can’t step over the gate because if Samantha sees me, she’ll do it too. She reaches around me, pushes down on the gate with her foot, and twists the latch with her hand.

To me, it looks more like she’s entering a ten-digit security code and providing a foot scan. I’m 32-years-old and this thing seems like an impenetrable steel barrier designed to keep out criminals. But, in truth, it’s a carefully engineered gate designed to keep their baby MacGyver from toppling down the stairs.

As soon as the gate swings open, I hear her. Little tiny bare feet tip-tap-tapping down the hallway from her bedroom, emanating a high-pitched, ear-piercing scream that I’ve learned to recognize as the sound of excitement. She stops when she sees me standing by the gate, and approaches carefully, waves of blond curls covering half of her tiny face. She brushes the strands from her grey-blue eyes with the back of her hand. Her dad stands behind her, still wearing his uniform from work, and gently pushes her towards me.

Samantha stares up in wonder, flashes a baby-toothed smile, and runs around me in circles until her mother reaches down to stop her from falling. She asks Sam to say hello to me. Samantha screams again, only this time I can tell it’s not a happy sound. I bend down to get a closer look at her perfect little face. She reaches out to touch my guitar pick necklace, her eyes intently locked on mine. Holding the tips of my fingers together in a cone shape, I swoosh my hand up in the air like a missile.

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Usually, that’s when we make launching sounds like a flying rocket, followed by a blasting explosion. But, today she watches in silence, so I make the sound for her. I whizz my cone-shaped hand up and zoom it all around—imitating the high-pitched whistling of a missile—before exploding my fingers into her tummy and tickling with a giant KABOOOM! Her little giggles eventually graduate to uncontrollable laughter, and she reaches for my hand to do it again. And again. And again…

This is her favorite game that we play, and honestly, it’s my favorite too. The “missile hand” can tickle and hug her in ways she would never tolerate from my non-missile hand. I take advantage of the close contact. We play hand-missile for nearly thirty minutes in the hallway, before Paula motions for me to come sit down.

She tells her daughter that we’re done playing “rocket” for now, and we can play again a little later. Sam hops into the living room behind me like a pogo stick, waiting for our game to start anew. Paula suggests that she pick out her favorite book for us to read instead. It’s usually a hit, but on this particular day, her eyes grow wild, almost glossing over, before her tiny arms start to shake.

With one hand fisting large clumps of perfect curls, she smacks herself in the face with the other. I bend down and try to calm her, but it only makes it worse. She holds her breath for a few uncomfortable seconds before belting out an ear-piercing scream and banging her head into the nearby wall. Paula is up to restrain her before I can even blink. She lifts her from the ground and pulls her close to keep her safe from herself.

Sam’s tantrum continues to escalate to a full-blown meltdown, and I can only standby and watch helplessly. She pulls a hand free from her mother’s grip and tears at the air with tiny fingers, flinging her feet frantically. Beneath the sound of Sam’s deafening screams and intermittent sobs, I can hear the faint sound of Mickey Mouse and Donald Duck playing in the background.

Paula shifts the weight of her flailing two-year-old and struggles to keep her still. Her cheek is red in one spot, where Sam’s thrashing hand accidentally made contact. In the chaos of it all, my best friend looks up at me with a faint, exhausted smile, and says, “I’m sorry.”

That’s only one of many experiences I’ve had with Samantha. Sometimes she’s happy and content for my entire visit, other times she experiences unusual and rapid mood swings, but many times she seems to shift back and forth from extreme terror to overwhelming anger and frustration. Most children throw temper tantrums, especially at 25 months, but Sam’s tantrums are very different from those of an average toddler.

A Little Bit About Sam & Autism Spectrum Disorder

Children without autism throw tantrums to get what they want. But, children with autism and sensory processing disorder experience uncontrollable outbursts for a variety of reasons. Mostly, Sam’s outbursts are related to sensory issues. Sometimes she hears a noise that agitates her senses, other times she sees or smells something she’s afraid of. Children with autism often experience tantrums because they’re unable to verbally express their needs or feelings.

For some children, like Sam, a tantrum includes some form of self-harm: banging her head into the wall, hitting herself, biting herself, etc. Researchers believe some children hurt themselves to release endorphins in the body that provide them with a sensation they actually enjoy.

She’s a truly incredible child, with above average intelligence and the spirit of a warrior. Perhaps she gets those two attributes from her mother, who’s the kind of person who perseveres in extremely difficult situations, and consistently stands up for what’s right, despite the consequences.

Paula: Super Friend and Super Mom

I met Paula 21 years ago—in the sixth grade cafeteria. We happened to be sitting with the same group of girls, and one of them was teasing me relentlessly. The kids in middle school often called me a “dyke” or “boy-girl” because I played on the boy’s baseball team, and I wore an Oakland A’s jersey with baseball cleats to school on a regular basis. I argued with the mean girl to stop calling me names. Paula stood up from her seat and slammed her lunch tray into the table. The entire room was suddenly silent. She pointed her finger at the girl and asked, “Do you want me to beat the crap out of you, or are you going to shut up and learn how to be nice?” Needless to say, that girl never bothered me again, and Paula and I have been besties ever since. At 5’3, she has always been small, but her fierce warrior spirit can make her seem ten feet tall under the right circumstances.

Another time, when my boyfriend broke up with me in 9th grade, Paula asked her teacher for a pass to meet me in the bathroom. I was devastated. I was so upset that I didn’t even bother asking for a pass. Skipping class meant big trouble at our high school—and for me, at home too. Paula spent the duration of the class period consoling me on the bathroom floor until I finally stopped sobbing like a baby.

Five minutes before the bell rang for lunch, one of our teachers came into the bathroom and asked to see our passes. I felt Paula reach behind her back and graze the side of my arm, pressing a piece of paper into my hand. Before I could stop her, she stood up and admitted that she was skipping class without a pass. As they left the bathroom to walk towards the principal’s office, Paula turned to me and smiled, as if to say, don’t worry about me—everything will be fine. That’s the kind of person Paula is.

Enter: Daryl and Baby Sam!

Years later, Paula married a wonderful guy named Daryl. I approved of Daryl whole-heartedly—not just because he loved her undoubtedly, but also because he was kind and generous to her friends and family.

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When she became pregnant, I was really excited for her. And, once the baby was born, I rushed to her house to meet her for the first time. I parked my car in its usual spot, but instead of rushing to the door, I found myself lingering in the driver’s seat, and then taking the slowest 48 steps I’ve ever taken. In that moment I realized that I was actually afraid to meet her. I knew our friendship would change, and secretly, I felt a little jealous.

Believe me, those feelings were fleeting, because once I made it through the front door, up the stairs, and into the living room, Paula handed me the most beautiful little baby I’d ever seen, and I was smitten. As I stared down at this tiny human being, I was flooded with emotion. She looked exactly like her mother. Her lips, the shape of her eyes, her cheeks, and her tiny nose—there was no doubt whose child she was. It was at that moment when I realized I wasn’t loosing a best friend; I was gaining a niece, and she was absolutely perfect.

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I couldn’t stop holding her, kissing her, and staring at her tiny face…

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A Mother Knows Her Child

It’s been more than two years since the day I met Samantha. In the beginning, I watched Paula and Daryl endure the usual struggles that come with parenthood. On the outside looking in, she was a normal, healthy baby. But, overtime, her behavior began to change, and by 18-months old she was completely non-verbal. Paula expressed overwhelming concern for her daughter every time we talked on the phone—but doctors, friends, and family—everyone she knew dismissed her concerns.

Samantha’s behaviors progressed, while Paula’s fears for her child continued to grow. Her pediatrician finally recommended a speech program for infants and toddlers, and Paula made the first available appointment. Sam was eventually evaluated and qualified for their speech therapy services. She was exhibiting major delays in her receptive and expressive language and fine motor skills. By the time she turned 2-years-old, the only word in her entire vocabulary was “Ta-Da”.

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Sam’s Spectrum

Language is one of the first things to be affected by autism spectrum disorder, and there’s a long list of symptoms that often follow. Some children with autism also suffer from other behavioral or developmental disorders. Some are even mentally retarded. Samantha, however, is above average intelligence. Her IQ presents itself in unique and interesting ways, like throwing together a puzzle in mere seconds, or figuring out how to crack a complicated lock or latch system that would leave a normal kid stumped.

Some of the most difficult symptoms of ASD and SPD are the explosive meltdowns and tantrums I described earlier. Using certain words, touching certain objects, or even a simple change in her daily schedule can send her into what Paula describes as “a head banging, hitting, screaming, and hair pulling rage.” She thrives in a secure, consistent environment, and enjoys the security of a well-planned routine. If structure is important to an average child, it is imperative for a child with autism.

She’s very methodical, and often chooses to sit in the mulch and stack rocks in neat piles instead of playing on the playground. She loves to touch and collect leaves and grass, but despises the feeling of sand and finger-paint. It’s almost like the world is telling her one thing, while her senses are telling her something else entirely.

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Finally, A Diagnosis

In late January of 2014, Samantha was diagnosed with Autism Spectrum Disorder (ASD) and Sensory Processing Disorder (SPD). For her parents, it was as much of a relief as a painful diagnosis. At least they knew what they needed to do. Although there’s no cure for ASD, early detection and intervention are crucial for her future development. There are critical periods of neurological development, which occur in the brain between the ages of one and five. It’s important for all children to receive proper behavioral care, especially in that age group. But, for children with ASD, it’s imperative.

That’s because ASD directly impacts early brain development. It’s characterized in varying degrees by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors. Children with ASD often experience difficulties in motor coordination, along with severe bouts of anxiety, insomnia, and attention deficit.

A defining feature of the human brain is its ability to evolve based on certain functions. Sam’s brain can literally rewire its own genetic formation, based on her sensory, motor, emotional, cognitive, and linguistic activities and exposures. Extensive research shows that intensive early intervention in ideal educational settings during the preschool years results in improved outcomes in most young children with ASD. Under the right circumstances, children with Autism Spectrum Disorder can grow up to live independent, productive lives. In fact, many people with ASD excel visually, musically, creatively, and mathematically.

Sam’s Treatment Options

Luckily, treatment for autism spectrum disorder is consistently advancing; there are more and more programs and therapies available every day. Every child deserves the chance to achieve a future without limitations. Which is why Sam’s parents were ecstatic when they received a call about an opportunity for their daughter to take part in a classroom research program at Kennedy Krieger Institute in March of 2014.

The program lasts five months and classes are held every Monday through Thursday for two-and-a-half hours a day. Sam loves it. When she started the program, her vocabulary was non-existent. At 25-months-old, her receptive and expressive language was consistent with that of a six-month-old baby. But in three months, Sam’s parents have noticed major advancements in her language and communication, social interactions, emotional perception, and responsiveness.

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In addition to her weekly classes at Kennedy Krieger, Samantha also works with a myriad of in-home specialists once a week. Those include a special educator, an occupational therapist, and a private speech therapist. She also attends outside speech lessons twice a week. Her developmental and behavioral progress improves on a daily basis, which has made her parents feel truly optimistic about her future.

Tragedy Strikes & Another Insurance Company Bites The Dust

In a perfect world, that would be the end of my story. But, unfortunately, this world is far from perfect. The weekly classes at the Kennedy Krieger Institute are part of a temporary research program that ends the last week of August.

Sam’s doctor believes she needs consistent treatment in a classroom setting, in addition to her regular speech and occupational therapies. Since Sam’s research program ends in one month, Paula and Daryl have to enroll her in a therapeutic day program at Kennedy Krieger.

Unfortunately, major insurance companies—like Cigna—are not required to cover Autism or SPD related treatment and therapies in certain states. The daily fee for Sam’s program is exorbitant, and with the combined cost of speech and occupational therapy (averaging between $25,000 and $75,000 a year), Paula and her husband are afraid they won’t be able to make ends meet.

It kills me to sit back and watch this incredible, hardworking family, who pays to have adequate health insurance, struggle to pay the bills for the treatment their child so desperately needs.

I know that if anyone can make it work, it’s my best friend—the brave girl who repeatedly stood up for me, always sacrificing her needs for others. Paula will tell you, “Despite the challenges we face every day, we are committed to providing Samantha with every opportunity that will help change her life and better her future. As parents we desperately love our children, and it breaks my heart to see her so conflicted and in pain on a daily basis.”

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But, for all of her struggles and conflicts, Samantha brings more joy, love, and originality to this world than any one could ever imagine. Above all, she is a remarkable 2-year-old girl, who happens to suffer from an arduous developmental disorder. We believe, with the right medical treatment and the unconditional love of family and friends, Samantha’s development will continue to progress.

What It’s All About

Autism is a battle Sam will fight for the rest of her life, but with your help, she can receive the treatment she needs, allowing her the opportunity to live a full and productive life. Please, please, donate to her cause. We can’t change the whole world, but we can change the world for one little girl. Every-single-dollar helps, and for every 40 dollars we raise, Sam can attend one more speech therapy session.

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If you can’t donate, please share this post with as many people as possible. Feel free to contact me with any questions or concerns about this fundraiser, Sam’s progress, Autism Spectrum Disorder, or Sensory Processing Disorder.

You can check out Paula’s personal WordPress site at http://overcomingmorethanjustwords.wordpress.com/

To My Best Friend, Paula-Jean,

You were the first girl to ever steal my heart. Our time together hasn’t always been constant, and I’ve certainly not been a perfect friend. Our personal struggles, distance, time, and professional obligations have made it difficult to be together as much as I would like. But, you are such an inspiration to me. I’ve honestly never met a mother who loves her child the way you love Sam. It doesn’t matter how much time lapses between our visits; when we’re together it’s like nothing has changed between us. You are now—and will always be—my very best friend. And, I will be here for you—from now until forever.

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13 thoughts on “Dropping in on Autism: One Family’s Struggle with ASD & SPD

    • I haven’t always been there…but I’ve gotten my act together and I will be here for you indefinitely moving forward. I love you! Everything will work out; if I have to beg on the streets, we will get Sam the treatment she deserves.

      Like

  1. Gammie is sitting on the deck; tears won’t stop running down my face. The article is awesome, but the fact you took the time to care about our girl. That is life the way I know it should be. Thank you Kristinia for all that you are. You have ALWAYS and DO mean the ‘world’ to this family. Dad is smiling!

    Liked by 1 person

  2. I have a friend who has written a really good and informative account of her experiences with autism; definitely worth checking out. seeingdoubleautismawareness.wordpress.com .

    Liked by 1 person

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