A TALE OF 2 ATROCITIES – (Special Edition)

Most of this story is a first-hand account of Cecilia’s life and struggles as a single mother, raising a daughter who has battled for her health and rightful place in this world as a person with special needs. As fair warning, much of what they have been through may at times seem unjust, aggravating and graphic. Please keep an open mind and heart as you read their story.

Emily has both epilepsy and autism. Life has been particularly difficult for her and Cecilia the past year and a half, as the they’ve been consistently in and out of court amid two life-altering cases.

At two and a half years old, Emily was diagnosed with autism. Eight years later, when Emily and Cecilia were living on the West Coast, Emily was also diagnosed with epilepsy. In fact, neurologists explained to Cecilia that Emily’s form of autism spurred her epilepsy. Neurologists also revealed that girls with autism tend to be more susceptible to develop epilepsy than boys with autism.

Two weeks prior to Emily’s 10th birthday, Emily happened to be highly stimulated one evening, between computer games and TV. Cecilia suddenly heard a loud thud to the floor; “I thought Emily just fell off the edge of her chair.” After Emily failed to answer her mother that she was okay, Cecilia knew something was wrong. When Cecilia walked into Emily’s room, she found her daughter convulsing on the floor, her head tightly crooked to the left and her eyes rolling in the back of her head. Emily’s first seizure happened to be a grand mal. At the time, Cecilia was beside herself, screaming because she had no clue what the problem was. It wasn’t until Emily was rushed to the hospital that evening, that a doctor explained she had a seizure and epilepsy. Cecilia felt helpless.

Growing Pains

Backing up to 2008, while Cecilia was on vacation from the West Coast with her now ex-husband, her sister-in-law informed her of a program for kids with special needs in the Midwest. For the next three years, Cecilia watered that seed in her mind’s eye. After an amicable divorce in 2011, Cecilia determined it was time to uproot herself and Emily, move and start anew.

Emily’s father is still very much a part of Emily’s life, even though he remains out west. The lines of communication are open between the two, and Cecilia makes it a point to inform him of everything that transpires in Emily’s life. He also does his best to visit and offer support. For instance, this February when Emily was hospitalized for a severe reaction to Phenobarbital, he took an extended trip to the Midwest to be with her. As chance would have it, he had unfortunately just lost his job. Nonetheless, he was there to take care of Emily and offer relief to Cecilia.

Medications

Frequent trips to the hospital have been unfortunate realities for Emily and Cecilia. Little did they foresee the degree of experimentation involved in finding the proper medications and dosages. Emily has experimented with twelve different medications, most of which have either proved ineffective or worsened the severity of her seizures. She’s down to her two last hopes – Depakote (since 2012) and Phenobarbital (since May 2015). The Phenobarbital initially seemed to exacerbate her seizures. This past January, her reaction to the medication was so severe she was rushed to the hospital. Cecilia recalls Emily losing control and rapidly flicking the light switches off and on screaming, “Help me, help me; my head is killing me. I’m going to kill myself.”

After Emily was stabilized, her doctor determined that her dosage needed to be decreased from 5 to 1 pill in the morning and 1 at night. Adjusting the dosage of her current medicine was the only option left, until they found the right formula. Ensuing that adjustment, Emily had another episode in February while at school. This time, observed repeatedly banging her head against the wall, she was deemed potentially dangerous. The teachers therefore isolated Emily by locking her in a classroom. Cecilia was called in from work to pick her up, at which time she assessed Emily was in such a state that she needed to be escorted to the hospital via ambulance. The hospital kept Emily under observation by doctors for a full week. Emily was in what was called an “M-1 hold” (a Mental Health Hold), as the doctors ran tests on her.

At this juncture, doctors determined Emily needed medication to help offset the side effects of her psychotic episodes, and prescribed a mild dosage of a psychiatric drug named “Intuniv”, also used to treat ADHD. As that seemed to help, neurologists further discovered Emily’s sweet spot with the proper dosage of Phenobarbital. Emily immediately responded positively to just 1 pill in the morning. Since that recommendation, she has been going to a local Children’s Hospital and vastly improved. The frequency went from one seizure per month while living in the West Coast, to 2 seizures a week after moving to the Midwest. Emily has been seizure-free since December. Conjointly, she has felt no uncontrollable urges of wanting to hurt herself or anyone else.

The reputable Children’s Hospital also concluded over numerous tests that Emily is not a candidate for any current operations potentially beneficial to her condition. Emily’s seizures are generalized, meaning they can start from any point in her brain, rather than a specific area. Thankfully, Cecilia’s insurance plan has been able to cover a majority of Emily’s medical bills, but she states, “as soon as I’m done paying one bill, another one starts up.”

Adversity

School Aftermath

Emily doesn’t always understand other peoples’ intentions, most significantly her peers. When people are cruel to her, she doesn’t immediately recognize it and gives them the benefit of the doubt because she yearns for friendship. For this reason, Emily is predisposed to be in a more naturally vulnerable position than many of her peers. Furthermore, she is prone to overreacting when she feels threatened or attacked. As Cecilia explains, “If someone says ‘hi’ to her, she thinks they’re her friend.” Adversely, it’s understandable why she feels so deeply hurt when a peer goes out of their way to put her down.

Prior to her most recent seizure in February, Emily got into an argument with another girl at school. Things escalated to the point where Emily felt threatened and out of control, thereby triggering a “psychotic episode.” Exacerbated by the medicine she was taking, Emily experienced what Cecilia describes as hallucinations. Emily reportedly threatened to hurt the girl, at which point the school took serious and immediate action, isolating Emily from others. Subsequently, the mother of the other girl involved put a restraining order on Emily. This situation eventually went to court, where a judge ordered Emily could no longer attend public school for the rest of her high school years. As the judge pounded his gavel, Cecilia felt the weight of the world in the reverberation of the sound block. She felt like everything she had worked hard for – to keep Emily in school and give her a semblance of a normal life, was a failure.

A meeting ensued with Cecilia, the staff from the school district, Emily’s psychiatrist and the district director of special education. Both the director of special education and Emily’s psychiatrist heavily advocated their desire to help Emily find a permanent solution for special and private education. In the meantime, Emily has been homeschooled since the third week of February. The school district provides her special teachers at no additional cost. On the bright side, she is getting one-on-one attention, but she’s not experiencing the social interaction she craves. Two outstanding issues in court require ongoing appearances before the judge – (1) The restraining order; and (2) Guardianship, which she was just granted this past month.

Even though Emily is an 18-year-old junior and faces a host of challenges, she is determined to finish high school and go to college. In addition to Emily missing a lot of school due to myriad health-related episodes, Cecilia states that is not the only thing that has kept her behind. “A common issue when Emily was having more seizures was that she would forget things she [had] learned the day prior to her seizure.” In essence, it is believed that Emily’s seizures severely impact her memory.

Notwithstanding, Emily has big aspirations and has conducted research to find a college to accommodate her and others like her. Specifically, she recently attended a career fair where she decided that the University of Montana is where she wants to go. Cecilia recalls her excitement, “Mommy, this is the college that is going to help me because they have programs for kids with special needs.” Cecilia can recognize that college is a primary focus for Emily right now, and wants to both encourage her and set her up for success, which is why she has suggested a local school as a first step toward preparing for an out-of-state destination. “Mija [an endearing Hispanic term], I think you should start here at a local college and then little by little you can get ready to live on your own.” Emily has also written a letter to the University of Montana and emailed other colleges. Many kids without disabilities don’t have the same passion and desire to prepare for college.

A Loss of Innocence

Rape

In July of 2014, when Emily was 16 years old, a teenage boy (with no disabilities or special needs) raped her at an after school/summer recreational establishment for kids. Cecilia reflects, “It happened so fast and completely changed her life.” Emily had been regularly attending the recreational establishment, a place where Cecilia was familiar with the staff and felt comfortable leaving her daughter. The day prior to the rape, Cecilia observed the boy and Emily hanging out together. Emily mentioned that the boy was there on vacation from another state. The next day Cecilia dropped Emily off, and not an hour later, received an urgent call from the center requesting Cecilia’s presence.

Mothers’ intuition kicked in. “I had that sixth sense and knew something terrible happened.” When she arrived at the recreational establishment, Cecilia was greeted by a mob of squad cars and police officers everywhere. When she saw her daughter, Emily was crying and her hair was tousled. Cecilia demanded, “What’s going on?” The police then informed her Emily had been raped. Cecilia’s heart dropped. Emily had not even fully comprehended what had just happened to her. As Cecilia cried with Emily, the police said Emily needed to be rushed to the hospital to have a sexual assault forensic exam done via a Sexual Assault Evidence Kit (SAEK).

Cecilia explained how things snowballed from that moment. From the hospital, Emily was sequestered to a child advocacy center, where detectives questioned her about the incident via video recording. “That wasn’t even the worst part. From the very beginning, I told the police, Emily has special needs, autism and epilepsy, and is on medications. I can show you official documents of the conditions Emily has. Please let me know, how can I help”, Cecilia pleaded, but claims that the police brushed her off and appeared disinterested. A detective later asked for a written statement from both Cecilia and Emily. In addition, the detective egregiously requested Cecilia to pick up photographic evidence from the SAEK at the hospital and deliver it to the police station. She complied.

Two days later, Cecilia showed up to the police station with the statements, and the same detective told her that he had already passed along the evidence to the District Attorney’s (DA’s) office without the written statements. According to Cecilia, the evidence was also turned in without Cecilia’s paperwork, specifying Emily’s special needs and conditions. When Cecilia expressed her issue with that, the detective back-pedaled and asked Cecilia to give her the statements, and that he would even let her see the recorded video session they had with Emily from the child advocacy center. Cecilia agreed. Upon watching the video, Cecilia exclaimed that they manipulated Emily and mainly asked questions that didn’t pertain to the case. “It made me sick to my stomach. That wasn’t even my daughter on there.” Regardless of the tactics used by the detectives at the child advocacy center, this seems to underscore how they and the police ignored Emily’s special needs and learning disabilities.

Courting a Court Date

A few days after her police visit, the DA called Cecilia to let her know the case had been dismissed. Dismayed, Cecilia demanded an explanation. The DA told her she had to meet him at his office, about an hour drive away, if she would like to speak with him in person. Cecilia held strong, “No, this happened in [her hometown], and you need to come [here] to explain it to me.” The DA finally agreed to call her later to schedule an appointment about the case dismissal. Cecilia reeled, “They tried to take advantage of me because I have no money!”

Cecilia was desperate for legal assistance she could not afford. Enter a non-profit organization, a resource center [name undisclosed] for people with disabilities. Cecilia recalled a certain woman from this organization at a class she once attended there. Not knowing where else to turn, Cecilia enlisted aid from the woman. As Cecilia relayed Emily’s story, the woman said she would help however she could, even though she didn’t immediately know how and didn’t provide legal services. In an even more surreal twist, the woman turned out to be a very close friend of someone at the DA’s office. According to the woman, the DA’s office had 3 people working on Emily’s case – one woman and two men. Allegedly, the woman at the DA’s office initially wanted to continue with the case; however, the 2 men overruled her.

Days later, the woman from the resource center accompanied Cecilia in an interview attended by everyone from the DA’s office. The DA that originally contacted Cecilia addressed everyone at the meeting, while noticeably giving Cecilia the cold shoulder. As the meeting progressed, Cecilia was furious with the way they blatantly ignored Emily’s special needs. In a last ditch effort, Cecilia threatened to take her story to the media if they didn’t reopen the case and press charges against the boy that was clearly implicated in Emily’s rape. Finally the DA’s office succumbed. “I was scared at what they might do if I kept opening my mouth, but I knew this was the right thing to do”, Cecilia repudiated. Knowing that she was not going away, the DA got back with Cecilia a week and a half later to inform her that they were going to reopen the case.

The boy was eventually charged with sexual assault, summoned to court and pleaded guilty. However, because the boy was a minor at the time of the rape, the judge sentenced him to only two years of probation. More than anything, Cecilia wanted people in her own backyard to be aware that there are people with special needs who are ignored and treated unjustly all the time: “They need to be respected. They deserve respect.”

The Recreational Establishment

After hearing Cecilia’s heartbreaking story, one grave question kept resurfacing. Wasn’t the recreational establishment culpable for the heinous crime that was committed under their watch? Cecilia explained that with the help from her friend at the undisclosed non-profit, they were able to make an appointment with the board of directors to address the center’s accountability. Cecilia mentioned that many people encouraged her to take the recreational establishment to court for a handsome settlement. Cecilia adamantly denied that motivation, “I’m not trying to get money. I just want to prevent this from happening to other kids.”

When Cecilia met with the Board, she expressed how she thought they needed to make changes to their system. In response, the recreational establishment presented a contract that Cecilia originally signed with them. They highlighted a section that stated Emily was allowed to go in and out of the building at will. In addition, there was no sign in/out sheet accounting for a building full of kids, ranging from 4th through 12th grades. Moreover, Cecilia found there is no program, clause, or supervision for kids with special needs. Once the kids leave the building, the establishment claims no responsibility for their well-being. More frustratingly, Emily was raped just off property from the establishment, and as she and her assailant left the building, the young man in charge of manning the front desk was allegedly texting and didn’t even acknowledge them.

Having had a brief follow-up with the recreational establishment, Cecilia claims that to this day, no procedural modifications have been made in light of Emily’s case.

Reflection

Support

In addition to Emily’s father, Cecilia has learned to embrace the support of others around her, especially her brother with whom she and Emily lived with for a short period. Her co-workers and friends, and Emily’s former school have all been willing to help at significant points. Cecilia has learned to accept support for Emily’s and her benefit. For instance, kids and teachers at Emily’s former school helped Emily with her seizures.

Cecilia is a teacher at a Head Start program in her hometown, and thankfully, has a very supportive boss who understands her predicament and consistently covers for her when Cecilia is called to tend to Emily. Cecilia calls her, “an angel in my life. Honestly, with everything going on with Emily, I just live my life one day at a time.” She can’t plan too much in advance because she has to remain ready for the unexpected. Cecilia knows the pressure that puts on her co-workers and doesn’t want to take advantage of that, but claims, “They’re amazingly understanding and know I have no choice.”

Cecilia also credits the Director of Special Education at Emily’s former school that fought for Emily in court. Despite the judge’s verdict of preventing Emily from going back to public school, the Director told the judge that the court was violating Emily’s rights, and that she should be readmitted by the public school. Even though there was no change in the judge’s ruling, Emily and Cecilia felt and appreciated the solidarity from a well-respected school district official.

Emily’s psychologist has played an integral role in referring help regarding the restraining order at school. She also did what she could when Emily was raped.  The psychologist not only provided extensive emotional assistance, but also helped Cecilia by writing a letter to the judge about Emily’s condition in response to the restraining order. Additionally, the psychologist was interviewed by the police and DA regarding the rape case. Cecilia believes this eventually helped to reopen Emily’s case.

Tips and Tricks

Cecilia attributes her faith as a major guiding light in her life. She thanks God that Emily has medically endured, is doing better and hasn’t hurt herself or anyone else. Cecilia often reminds herself of how lucky she and her daughter are to have each other. They’ve learned to lean on one another during the worst of times, and neither one nor the other would change that for anything.

Cecilia reinforces how important it is to do one’s own research to get the answers needed. It can be easy to give up or go along with doctors’ generalizations, but you have to be determined to find the right people and resources that will provide the right answers. She states you can never give up, you can’t feel embarrassed or afraid, and you need to ask lots of questions. Take the time to ask for help. That is the only way you will get it. “There is always going to be someone that can help you. I tell Emily, life is not fair. There [were] a lot of injustices that happened to you, but this is going to make you stronger. This is going to be a situation to where you will be able to help others in the future.”

“Talk to other people with epilepsy and autism – share stories and support as often as possible.”  Cecilia recalls one of the most frustrating moments in court with the judge when she repeatedly referred to Emily as mentally ill. Cecilia feels it’s a common misconception not only for her daughter, but also others that might have epilepsy or autism. In Cecilia’s words, “Emily is not mentally ill. Emily has special needs. She has issues that some people don’t understand. The effects from the medication are what has caused problems, but this is not my daughter.” Cecilia wishes to continue her passionate fight to convince the judge, the courts and others who don’t understand these two separate conditions, to recognize them properly. “I don’t want to fight for this to be right. I want to fight for this, for future people who go to court… so they can all better understand what’s going on.”

“Accept the condition you have. If you do not accept it, you’re going to be fighting against something you’re not going to be able to win. Laugh about it and make jokes. It makes life easier. Your life is not going to stop because you have seizures. You have to keep living and enjoying the things you like to do.” Cecilia’s advice is something that Emily takes to heart in her extra curricular activities.

Emily loves to play basketball and Lacrosse. She also participated in the Special Olympics for downhill skiing and won 2 gold medals. She initially resisted the Special Olympics, until she learned of a boy in her class that was also going to be in it. This boy apparently has severe learning disabilities, and Emily expressed interest in wanting to help him. “You know what mommy, I want to help him. People don’t understand him and he needs my help.”  She has been a mentor to the boy, was in the newspaper (for her success this time), and has her eyes set on going to nationals next year. She also likes to dance – specifically hula and Tahitian dancing.