World Autism Awareness Day- My daughter's Story

Nothing to Disclose


Hello lovelies! Happy Tuesday! As you are more than likely well aware, April is Autism Awareness Month and today is World Autism Awareness Day. All across the bloggerverse people are posting blue, the color of Autism Awareness, or sporting puzzle pieces, the Autism Awareness logo.  I can't tell you how awesome it is to see so many people reaching out and helping to shine a light on Autism today. I'd love to personally hug each and every one of you, but since I can't do that, I'll just say thank you. :) I will be posting my manicure tomorrow, since this post is more important to me.

Autism Awareness is is a cause that is close to my heart. Some of you already know our story, but for those of you that don't, and those of you that missed it, I'd like to share it with you here today.  When I started writing this, it was still April 2nd, so I'm still counting this as my Autism Awareness Day Post. There may be some typos, since I can't bear to edit this. It's hard enough to write. As you read this, I urge you to keep an open mind and read to the very end. It's important.

My name is Kimber. I'm a blogger, business owner, friend, lover, confidante, and occasional pain in the ass. But first and foremost I am a mother. I have 2 incredible children, Dexter (almost 3), and Kallista (almost 12). This story belongs to my daughter.

Kallista was born on a gorgeous afternoon in June 2001. From the moment I saw her, I knew she was something special. She was a tiny thing, just over 6 lbs, but perfectly healthy. My pregancy was nowhere near enjoyable (let's face it, I'm not one of those women that enjoys being as big as a house, being uncomfortable all the time and having a small being playing bongos on my bladder) but it was normal, and Kalli was a happy, thriving baby. Like every parent, I had all sorts of hopes and dreams for my beautiful little daughter. Big dreams. I wanted her to change the world. 

Kalli was a good baby for the most part, save for being a touch colicky at night.  She was snuggly, loved to be held, and hit all of her milestones early. The only issue we really had was that she hated her crib, preferring to sleep in her bassinet, swaddled in her blanket. Otherwise she was you average, every day baby. 

Kalli grew quickly, and before I knew it, she was a toddler, tearing around the house, talking up a storm, and still hitting every milestone ahead of time. She was prone to some pretty large tantrums, but have you ever met a toddler that wasn't capable of throwing a mind blowing tantrum? Everything seemed normal. I wasn't worried at all. 

When Kalli turned 4, I enrolled her in the same pre-school that my nieces had attended. My family knew everyone there so I knew that she was in good hands. She seemed to do well and enjoyed going. She had some issues with speech - a hard time with S's and Sh's, but otherwise seemed to be thriving. But things are not always as they seem. 

At her first parent/teacher conference, I met with her pre-school teacher and the head of the pre-school. They seemed a bit nervous, but I figured whatever was going on was just normal kid stuff. I was told how wonderful my daughter was, how much they loved her and enjoyed having her there, but that they were concerned about her. They felt that she was delayed developmentally. I became very angry and chose to write it off as a misunderstanding. The only kids her age that she had been around were a former friends daughter, who wasn't exactly a good kid, and I figured Kalli was just acting up since she didn't really know better. I rationlized her motor skills deficits as just being clumsy. I thought she would grow out of it and everything would be fine. Her teacher continued to voice her concern over the next few months, but I wasn't listening. My daughter was fine. Outwardly, she looked like everyone else,  she didn't have any delays in her milestones, and outside of her tantrums, she was a joy. What could possibly be wrong??

The next year Kalli started Kindergarten. Her teacher was another friend of the family, a former counselor and just the sweetest woman ever. I was nervous, but thought Kalli would do great. I had high hopes for her. She was fine. She had developed some interesting behaviors, but I was convinced that they were just a stage and she would grow out of them. She would be fine.

Within the first 2 weeks of school, the calls started. Kalli was throwing tantrums that were beyond what I had ever seen. She was throwing herself to the floor, banging her head on the wall, and was inconsolable. The slightest thing would set her off - another child breaking the rules, a change in schedule, the noise in the classroom or on the playground. The calls were coming almost daily. I didn't know what to do. Her teacher reported that the only thing that seemed to calm her down was spinning in circles (which I had seen her do, but all kids spin sometimes, right?), or swinging.  At home, she had started flapping her hands when she was excited or upset, which I thought was just a passing phase, something she did when she was frustrated with me and couldn't quite express what she was feeling. This had escalated at school, happening more and more throughout the day. Her teacher reported that she was also opening her mouth really wide and tensing her face, sometimes with the hand flapping, sometimes without. She wanted to meet with me. And I was growing increasingly concerned and afraid. 

What was happening to my little girl? Why was she throwing hersellf to the ground and hitting her head on the wall? Why was she flapping her hands so hard that the other kids thought she was trying to fly? Something wasn't right...but I had no idea what. So, I did what so many of us do...I hopped online and searched for these behaviors. 

What I found was something called "Sensory Processing Disorder", a disorder where the brain cannot process all of the sensory input coming in and the person ends up completely overwhelmed and unable to cope.  It was treatable with certain therapies, and she fit so many of the symptoms that I was convinced that was it. Okay, I could handle this. I would get her the therapy that would help her, she would learn how to process all of the sensory stimuli and be ok. 

When I met with her teacher, I was fully prepared to hear that Kalli probably had SPD, and that things were going to be just fine. But what I heard was something that I was not prepared for. For the very first time I heard the word Autism associated with my child. And I was devastated. All I knew about Autism was about classic Autism. Kids that couldn't speak, needed assistance 24/7 - kids that weren't able to communicate even their basic needs. The world was caving in on me and I thought I was going to pass out. That wasn't my child! Autism??? No! Look at her! She can speak! So she flaps her hands and spins in circles. So changes in her routine freak her out. Maybe that's just a phase. But that is not Autism!

Thankfully Kalli's teacher had alot of experience with Autistic children and their parents.  She managed to calm me down and convince me to have Kalli assessed. In the meantime, she gave me some information and resources on Autism. Even though I was convinced that she was wrong, I decided that I would look into it. I wanted to know *why* she thought my baby girl was Autistic. I needed to know - was she verbal now and would lose the ability over time? Was she just going to deteriorate and lose her ability to communicate with us? I knew her teacher well enough to know that she wasn't saying all of this lightly. There had to be a reason, even if I didn't really agree with it. 

Once I started reading about Autism, I understood. I learned that Autism is not just a disorder that renders people non-verbal, but that there are several disorders under that Autism umbrella. I learned that there are High-functioning forms of Autism, and that the people effected by them look and sound alot like everyone else. I read about Asperger's Syndrome, and everything clicked into place. The meltdowns when her routine was changed, the fine and gross mother skills deficits, the sensitivity to certain sounds and smells, fixating on one area of interest, and most of all - the hand flapping, and spinning (self-stimulating or "stimming"). She was all of this.  I agreed to have her tested and set up the date.

An Autism diagnosis does not come overnight, and we went from one appointment to the next for weeks. Kalli was tested, re-tested, and tested again. She saw therapists, neurologists, behaviorists - you name it, we did it. It was long and nerve wracking. Underneath it all I still hoped that we were wrong. A diagnosis of Autism would mean that her life wouldn't be the fairytale that I had hoped for for her. In those few weeks I had learned that the other kids in school were taunting her, excluding her , treating her badly for being different. And this was only kindergarten. I hoped and prayed and bargained with any and every god that I had ever heard of. 

Then, on a bright and sunny May morning, my world came crashing down. My daughter was officially diagnose with Asperger's Syndrome, a high-functioning form of autism marked by social deficits, motor skill deficits, self-stimulating behavior (hand flapping being the most common), sensory issues (sensitivity to light, sound, smells and textures, and a need for as little change of routine as possible. My daughter, my little angel, my whole world, was indeed Autistic.

I won't lie, and honestly most parents go through this- but I mourned the loss of the future that I had envisioned for my daughter. I allowed myself that luxury for awhile, and then I braced myself. I had done the research and knew what we were up against. I knew she needed an advocate. She needed me to be strong, to be there for her and to fight for her. 

I learned all I could about Autism. Every disorder on the spectrum. I devoured every book, article, research paper and web site about Autism and Asperger's Syndrome. I learned everything I could in order to help her thrive. 

We convinced the school that   she needed an IEP, and her needs were accommodated in the classroom.  Academically she was ahead of the game (Aspies are known to have higher than average IQ's), but socially? She struggled. She didn't understand others. She didn't interact like they did. Outwardly she looked like any other kid, but the stimming  wasn't something that she could control yet, and that made her a target.  Kids are cruel anyway, but throw someone that is different into the mix, and you have a recipe for disaster. 

I never hid Kalli's diagnosis from her, explaining everything to her and helping her understand why she is who she is. She was never ashamed or sad, in fact she was always proud. She has Asperger's, so what? She knew why she needed to stim, why a change in schedule would cause her to melt down, but she couldn't control it. And that meant that it was out there for every other child to see. 

The bullying started early. Kids would refuse to play with her. Ask her why she was so weird. Make up hurtful little rhymes and chants. It was heart-breaking. I asked the school to educate the other kids about Autism so that maybe they would learn to be accepting of others and their differences at an early age, but that didn't happen. In fact, the only thing that was highlighted was the fact that she was different and that the other kids should try to be nice. That was it. There were never any consequences for the other children. I was told they were too young to understand and that "kids would be kids". 

I'm going to skip around a little bit here, since the story is the same year after year...

Despite trying incredibly hard, Kalli had a hard time making friends. Occasionally another child would play with her, but then they would see her stim, or she would fixate on one topic and they would shun her the next time. As the kids got older, they started taunting her daily. Calling her stupid, retarded, asking why she didn't just stop being autistic. They started going out of their way to upset her, knowing that she would metldown if they pushed the right button. Then they would point and laugh.  They would throw things at her, kick sand at her, and even go so far as to push her off the swings. 

And the school did nothing. Not a thing. No matter how hard I tried. 

This was the norm for Kalli up until 5th grade. That's when things came to a head. 

Kalli's teacher was a shrew of a woman who made it clear to me in the beginning of the year that Kalli would have NO special treatment. IEP? What IEP? SHe doesn't need that! She just need some discipline. You're using her Autism as an excuse.  I fought with the school, but they felt that she would do just fine with less accomodations. She needed to suck it up and get ready for middle school. My mother volunteered at the school to keep an eye on things and actually overheard them saying that as long as they had her IEP on paper, it didn't matter if they actually used it. Kalli's grades started slipping, and the kids started taunting her in the clasroom. Her teacher did nothing to stop it, saying that Kalli instigated it with her behavior. When Kalli would stand up for herself, her teacher would come down on her, telling me what a problem child she was and saying that Kalli was the bully since she would not back down from these kids. 

You have to realize that at this point, my daughter had been taunted, teased, and bullied every single day of her school career. She routinely came home in tears, would beg and plead to stay home. She was at her breaking point. So instead of crying and slinking away, she became angry. She would stand up for herself, tell these kids to stop and leave her alone, yet she was the one getting into trouble. I went to the administration so many times, and every time, nothing improved. Nothing changed. It got to the point where I would cry when I had to leave her at that school, knowing that I was sending her into this place where she was treated like shit, and noone would help her. 

Things kept escalating. One day, my husband (Kalli's stepfather) went to pick her up from school. He was waiting for her in front of the school, standing next to a little boy. When Kalli came out, she said hello to they boy's sister. She said hello back, and Kalli turned to straighten her backpack. The little boy turned to his sister and said "Don't talk to her! She's the weirdest girl in school! She's sick!". Now, my husband and I are the kind of parents that other parents dread. We don't hesitate to speak up, and we will be on your doorstep demanding answers in record time. My hubby didn't care this kids mom was right here, he turned to this boy and said "You know that's my daughter right? She's not weird. She's not sick. She has Autism." The kid turned sheet white, stammered an apology, and his mom grabbed him and ran away like a sheep. Not the kind of thing you want to hear said about your child, and that was tame.

This kind of thing happened every day. There was one girl in particular that made a sport out of tormenting Kalli. She would follow her around, calling her stupid, retarded, ugly, worthless, etc. SHe would actively seek out kids that were nice to Kalli and tell them to stop talking to her because she was weird and crazy. The other girls would shout out insults about her across the lunchroom. Pass notes about her in class. Run away screaming "ewwwwww" when she walked by. They would tell her she needed to be in the mental ward. That she was crazy and nobody like her and that she needed to go away. Her teacher saw all of this. She did nothing. I called the school and complained. They did nothing. For 5 years, they did nothing. This was my daughter's life. At 10 years old she had no self esteem, no sense of self worth, and was terrified to go to school. 

Things came to a head when I picked her up from school one day. I was walking towaard the front of the school, and Kalli was walking out of the front doors. The girl that targeted her the most was standing off to the side. Kalli reached out and swung around a sign post as she walked by. Another girl did the same thing right after Kalli. That was I heard the mean girl yell out "Ewww! Don't touch that! Kallista touched it! If you touch anything she's touched you'll be retarded like her!" . That was it. That was the final straw. I marched into the front office, stormed right past the receptionist and secretary and busted right into the prinicpal's office. I didn't care what she was doing. She was going to listen. I told her what had happened and her response was that I was overreacting and she would deal with the girl the next day. 2 weeks later, nothing had been done. Nothing. And I was furious. I started speaking with other teachers and staff, and I learned that they had witnessed incidents that I had never even been told about. Earlier that week, my daughter had been grabbed and thrown to the ground by a boy in her class. She hurt her arm (I was told that she fell), and everyone who saw it happen laughed. Including the teacher. When Kalli started crying she was told that she was being dramatic and to "suck it up".  If I was pissed before, it was nothing compared to this. I asked why nobody had gone to the administration. The other teachers told me that when they did stand up for Kalli, they were threatened with their jobs.

For 5 1/2 years my daughter had been bullied at this school. For 5 1/2 years the administration had promised to enforce their zero tolerance policy and had done nothing. Something had to give. 

It came in the form of the worst phone call of my life. I was in the car with  my husband and one year old son. I saw the school's phone number come up on my phone and braced myself for the usual "your kid is a pain in the ass and had the nerve to refuse to let another kid treat her badly" phone call. But that's not what I heard. I was told that my daughter wter was in the principal's office and that I need to come right away. I could hear her crying in the background and demanded to know what was going on. Was she being suspended for fighting back? Had someone hurt her? I needed to know. It was none of the above.

My daughter was there because she was planning to kill herself.

She was 10. 10 years old, and already in so much emotional pain that she no longer wanted to live. I drove faster than ever to get there. When I arrived, Kalli was in the principal's office, with this look on her face.....it was a look I had never seen before. She looked defeated. And I lost it. Why was this allowed to happen in the first place? Why had the school ignored her? I had called and reported everything and had been assured that things were going to be dealt with. I had spent over 5 years fighting and pleading with this school to help and protect my daughter. They had failed her. And I felt like I had failed her, even though I knew in my heart that I had done everything that I was supposed to do. 

I had to take my daughter in for an emergency suicide assesment.  She was labeled as medium risk, and I had to go through my house and lock up everything and anything that she could use to hurt herself with. But she was in so much pain that she kept trying to find a way. She even tried to choke herself to death, not knowing that she would just pass out and not actually die. I was a wreck. I was losing my baby and I didnt know what to do. I had tried so hard with this school. I couldn't transfer her - no other school close by would take her since they were not equipped to handle and Autistic Student. There were no schools for Autistic kids, and I couldn't home school her while working full time and having an infant. Enter my mother. 

My mother had recently befriended a school board member and passed my story along to her. She was furious, and called me up, vowing to help us. She took our story all the way to the superintendant, and the head of the school police (which is a division of the city police dept.). I received a call from the superintendent himself, as well as the head of APS police. They both gave me their cell phone numbers in case I needed them and swore to me that this would be handled. They couldn't tell me how, but they promised it would happen. 

The next day, a uniformed police officer showed up at the school. He pulled the known bullies out of class and apparently scared the living shit out of them. I don't know exactly what happened, but I do know that not only were their parents finally involved (yup - parents had never been notified previously), but one of them was suspended, and the other was in deep trouble, but not suspended. I don't have details of what happened to the administration, but I do know that hey didn't make it out unscathed. Kalli's former teacher, although still teaching, is no longer teaching 5th grade. She's now teaching 3rd grade, and hopefully doesn't have any special needs children in her class.

After that, Kalli's troubles decreased. Thankfully she only had a few weeks left until she left that school for good, and she made it through. But it never should've taken 5 years and involving the superintendent and the police. I can't help but feel that had the administration enforced their own zero tolerance policy and listened to me when I asked for their help that Kalli would not have ended up at the point of wanting to commit suicide. 

Kalli is now in 6th grade at a new school. She is part of an Autism Program that is being piloted in APS. She has a social communication class, a sponsor teacher, and her own aides that go with her to every class. She has a word proccesor to help her keep up with written work, accomodations in her classrooms, and most importantly, neither her teachers, aides, or sponsor teacher allow anyone to bully her in any way. Even the slightest infraction is handled immediately and with consequences. They have an APD police officer on site, and I have yet to have to lift a finger to keep her safe there. She is now thriving, has made friends, has a boyfriend, and is now in gifted classes. 

She does have a therapist, and has been diagnosed with mild PTSD due to the bullying, but she is improving every day. I see a spark in her that I haven't seen since she was 4. She loves art, music, history and is passionate about Autism Awareness, LGBT rights, and fan fiction. She's growing into an incredible young woman and I am so blessed to have her. 

This isn't her complete story since that would take months to tell, but it gets the point across. Autism Awareness is important. Acceptance is important. Regardless of how different she may be, she is still a human being, with feelings just like the rest of us. When she was in an environment where she wasn't understood and noone made an effort to learn about Asperger's Syndrome and to try and understand her, she was miserable and ended up wanting to die. Now that she is in a place where she is understood and people understand why she does what she does and is the way she is, she has been able to thrive. That isn't coincidence. 

If you take nothing else from out story, please, please, please, teach your own children to celebrate diversity. Teach them about Autism and other disorders. Teach them that everyone has a right to be themselves and to treat everyone with kindness. Teach them to take a moment to learn about those people with special needs that they come across. And most of all, be a role model. We cannot expect our children to accept those that are different unless we do the same. 

Thanks for sticking with me. I know this is long, but I share this story in the hopes that it will touch at least one person and help make a change. 

The statistics are rising. The latest numbers show that 1 in 50 children will be born with an Autism Spectrum Disorder. One of them could be yours. Awareness is crucial. 

Thanks for stopping by, folks. Happy Autism Awareness Month!                



Nothing to Disclose