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Emily's Story








Emily is a special little girl and is literally one in the world. When Emily was born 13 years ago, the doctors diagnosed her with Chromosome 2q36 Deletion Syndrome. Genetic specialists have found no record of anyone else having the same deletion anywhere in the world. This means that no one can tell us what to expect for Emily’s development, health, or quality of life. The chromosome deletion has caused her severe delays physically and cognitively, as well as numerous medical issues, such as 20 surgeries, a feeding tube, asthma, epilepsy, hydrocephalus, hearing loss, bone abnormalities, horseshoe kidney, and multiple other diagnoses. As if Emily’s life isn't difficult enough, she also has autism, which causes her sensitivity to sounds, lights, and textures, anxiety in unfamiliar environments, and difficulty coping with change. When Emily is feeling frustration, anxiety, fear, or is looking to make herself feel better, she engages in severe self-injury behaviors. But even though she's had a rough life, Emily is a sweet, silly little girl. And she changes the life of everyone she comes in contact with.


Not including the current therapists at the school she attends, Emily had thirty different therapists and teachers in her first 6 years of life, and I saw little to no improvement in Emily’s abilities with most of them. Every doctor Emily had was encouraging behavior therapy (called ABA), and we'd also read the research and testimonials from happy parents all over the world who insisted that ABA was amazing. Over the course of 3 years, we tried four different behavior therapists. The therapists seemed at a loss for how to work with Emily, and we watched her self-injury behaviors go from occasional head bangs, to constant head banging, biting her hand till it bleeds, punching herself in the mouth and even knocking out teeth, slapping her face, poking her eyes, and squeezing her throat. The therapists were no help as time went on and a few even threw in the towel. It was obvious they were losing confidence in her.

Although we still saw amazing potential in Emily, we had completely given up on sign language, and on behavior therapy because it never seemed to work. It frustrated her, it frustrated us, and most attempts at getting her to communicate left everyone in tears. As a result of making her so upset, we often spent hours trying to keep her from hurting herself while she screamed and had indescribable meltdowns. Most of her therapy sessions involved her crying and hurting herself out of frustration.


In 2009, we began another desperate search for ABA therapy.  Based on the therapists we’d already had, we were skeptical, but again, desperate. Emily was 5 years old, and her self-injury was out of control. She had a dark bruise and bump on her forehead that had literally been present since she was 20 months old. It had never had time to heal because of the constant hits. It’s in every picture we have, from every birthday party to every visit to Santa. It’s large enough in some that it even parts her bangs. When I was pregnant with my second daughter, Emily came with me to my baby shower. And in all my pictures, there’s Emily in her brand new “Big Sister” shirt, with a huge bump on her head and two black eyes as a result. I was crying and pleading for our pediatricians, specialists, schools, and support groups to please help us find help. Her self-injury behaviors had gotten more dangerous as she grew stronger. We were tired of the ER trips, CT scans, and MRI's, and I was so drained from having my heart broken every time I watched my beautiful baby girl forcefully bang her head on a tile floor or glass table.

Changes were made by the state to Emily's insurance coverage, and behavior therapy was no longer covered for children with autism. Although we are a single income family, we decided we had no other option but to keep searching for a better behavior therapy clinic and pay out-of-pocket. We were terrified of what was going to happen to Emily if her behaviors continued. After some searching, we visited the Applied Behavior Center (ABC) for an evaluation. I met with the owner, Bobbi Barber, who seemed genuinely interested in helping us. I was anxious for Bobbi to see the severity of Emily's behaviors, but while we watched Emily play in the school, she never once tried to hurt herself because she was so content and happy. This was a stark contrast from the elementary school she’d been attending, where she seemed miserable, rundown, and broken. Bobbi offered us a discounted rate of therapy so that we could afford to get Emily the help she so desperately needed.


Emily began ABA therapy at ABC twice a week after school, and I was crushed when I heard they wanted to teach her sign language. I just knew I had found another dead end. But I kept quiet and decided to try again. And 2 weeks later, Emily started signing “snack” for her favorite butterscotch pudding. Other signs soon began to follow—scratchy (for her favorite texture), water, swing, bounce, eat, and music. I was so excited, I just knew I had to find a way to afford their intensive behavior therapy program and send her there full time.

The public school she was attending for kindergarten had her placed in the profound classroom, kept her strapped in a chair most of the day, and even suggested to me that her happy squeals and laughs were too loud and inappropriate in a school setting. Every day, I would pick her up from school and she looked miserable. And every day, I would hear someone say what Emily wouldn't or couldn't do. Her self-injury was out of control, at a count of 400+ incidents during the school day. It’s hard to even imagine a number that high. We stayed up till all hours of the night, talking about how scared we were for Emily, and how miserable we were with her classroom environment, and the useless things they were required to teach her. We just couldn't bear to send her there anymore. A typical school setting had become too dangerous to Emily, even with a special classroom. She needed to spend her day in behavior therapy, not school.


In April of 2010, we enrolled Emily in Applied Behavior Center's full time behavior therapy program. Covering the expenses required even more sacrifices than we were already making, and for the first time in our lives, we needed financial help from our parents. But this program has been a literal life saver for Emily. There was a lot of “damage” the therapists at ABC have had to undo from years of Emily being forced by other therapists and teachers. She began to make amazing progress and every one around her could see it. Her self-injury behavior has dropped to less than a quarter of what it was when she started there, and on a really good day, the total count is around 30! Down from 400! She is learning skills necessary for the rest of her life, such as sign language, washing her hands, feeding herself, a drinking from a cup, all goals the school system considered “irrelevant.”

Our friends and family generously contributed to our online Fundly fundraising campaign, for which we are eternally grateful. It helped cover a year of therapy for Emily. But unfortunately, she has many years to go and we can't "beg" our friends forever. We have applied for grants, refinanced our home, and searched endless insurance options to no avail. Austin switched to a job with better pay, and as a result, Emily lost all of her Medicaid and SSI assistance. She is on a waiting list for services from the state, but the list is long, and she's already been on it since 2007. There is absolutely no way possible that we can afford this therapy program without help. And so we are trying to figure out how we can keep Emily at the place that has done so much for her.


We can’t begin to explain how heart breaking it is to know that our daughter may not be able to receive the treatment she needs to have a good quality of life, just because of cost. And so once again, we are on a desperate search, but this time, it’s to find a way keep her enrolled in the program that has made such a difference in our lives. That's where you guys come in!

For the first time in years, there is no bump on Emily’s forehead. There is no bruise. There are no trips to the ER with a softball size lump or two black eyes. Emily is happy to go to her program each day, and I don’t leave with a sick sad feeling like I did when she was in school. She’s making huge improvements and accomplishing goals, the therapists at ABC find her just as fun as we do, and finally we found a place that sees in her what we have seen all along. That’s what we've been desperately searching for all these years. And we aren't ready to let it go.

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