"Emma"

So I intended to write just one post about my job in the VE classroom and then move on, but there is one more story I feel compelled to tell that haunts me in these days particularly. And if I ramble or get off track along the way, forgive me. I never know where these things will go.
Her name was Emma (not really, but because this story is of such a personal topic, I am changing her name). She was in the V.E. class the first year I started. At four years old, she was a wisp of a thing. Her hair was dark brown and full of stubborn cow-licks, often a tangled mess, for which I blamed her mother. She was light skinned, but of spanish descent, so her eyes were a deep brown and doe like. I can't quite remember the first time I saw her or what I thought of her  in those early days. She didn't have a "label" which if you know anything about special ed, then you know all about labels. No, just "Developmentally Delayed" with no reason as to why. But remember, this was 1994. She had an older sister in the second grade who was a typical child and a high school age step brother, with some special needs of his own, but he didn't live at home.  She was always visibly clean, but disheveled at best, her clothes wrinkled and dingy and never particularly "little girly" looking at all. Again, I blamed her mother for not dressing her cuter or taking more time with her in the morning, because you know, I was 18 and I knew all about parenting! Ha!! But amidst all her clumsiness and lackluster, she was a beautiful child. Her mother was not very put together either. Three out of five days Emma would arrive late to school. While the other kids sat at circle time singing good morning songs, the door would creak open slowly and Emma, her sister and her mother would tiptoe in, a look of pure exhaustion on her mothers face. Her blouses were often tucked only half way in to wrinkled slacks that needed a good hem job. She had an office job, so she needed to look presentable, but most of the days she just looked awake. She would often talk about Emma and how she worried so about her future and where she would end up. She didn't know what would become of her daughter and feared about the coming years. Emma's sister would just stand there, trying to smooth out her sister's matted hair as her mother talked with the teacher. She seemed so, I don't want to say negative, but negative. I never took a liking to her and though I knew she loved Emma, it seemed so forced.
At that  time, I was an "enhanced assistant"which basically means I was "technically" hired for one particular child, but in reality I helped with them all. The little girl I worked with used a walker and was dealyed in her speech and development and as I think about it right now, looked ALOT like Camryn. I can't go into her story right now, as I get off track easily and want to focus on Emma, but I will say that little girl was an innocent child born into a really crappy family. And that's all I will say for now.
So, because I was busy with my assigned student most of the day, I really didn't get to spend a lot of one on one time with Emma. From what I had heard and observed she didn't talk much and when she did it was her own language. Her eyes, for all their deep brown, were eerily vacant at times and she seemed as if she lived in a world of her own. She had trouble staying on her cot at nap time and would "talk" to herself throughout the day. My student started missing more and more school, which meant I was free to help with the other kids more. Again, they all had a story and stole my heart, but I have to stay focused. This was before Dylan was in the class and at this time, if a student had a hard time resting at nap time, an assistant could walk them around the school while the others slept. I volunteered to walk with Emma, as I found her fascinating. I would take her tiny hand in mine and we would walk the halls. The school was an open campus, so we weren't confined to the inside. I would walk her through the schools butterfly garden and always name each bug and flower. I knew we weren't going to have a conversation about it or anything, but she was a child and she needed to be talked to, regardless of whether she talked back. We would take the winding path to the library, turn around and pass the huge live oak. One day in the fall, when the acorns were on the ground, Emma bent down and picked one up. "Acorn" I said,"Baby tree". She pinced it between her thumb and pointer finger and brought it so close to her eyes they nearly crossed. She would examine it and roll it back and forth in her hand, but not a word, or at least not a word I could understand. And then we would keep walking. We did this for the next couple of months, as my student got very ill and was out for long periods of time. And every day, Emma would pluck an acorn off the ground and I would say "Acorn.Baby tree." I tear up at this because I have these very converstaions with Camryn.  Then one day, when Emma was particularly antsy at nap, I volunteered to walk with her. We followed the same path we usually did and as we came to the oak tree, Emma picked up her acorn. I can't remember why, but I was looking the other way, not paying attention to what she was doing and then I heard it. The softest, tiniest but clear as a bell voice said "Baby." I was flabbergasted! She said baby! She said it! All these days I was saying it to her just because,hoping she'd get it but figuring probably not, but she did! "Yes Emma, yes! Baby!" I was so ecstatic that I grabbed her by the hand and raced back to the room to tell the other teachers. I was so happy and so proud and completely inspired.
A month later, on a lazy Sunday morning, I sat at the dining room table to read the newspaper sprawled out in front of me. Fifty percent chance of rain...sale at Macy's... Child 5, Drowns in Backyard Pool. I screamed "Oh my God!" and I cried for so long after.
They said it was an accident. They said her stepdad was out, her mother in the garage doing laundry and her sister and her were "playing" inside. They said she was nude, except for a pair of cowboy boots, which probably filled up with water as soon as she fell in. And they said her mother screamed when she found her and although the neighbors tried to bring her back, it was too late, she was gone.
Her birthday had been the Friday before and her mother was to bring in cupcakes, but she forgot. She said she would bring them in Monday, but there would be no need. I was not a mother then, not even an adult, but I remember thinking that something just didn't seem right. These days if you asked me if I would ever, EVER leave Camryn unattended around a pool of water, the answer would be "No way in hell!" She is drawn to water and has no fear of the dangers it can bring. And although I had no idea what Autism really was back then or that Emma was in fact Autistic, I knew that no child should be left alone around a pool, and certainly not a child like Emma. Yet, she was and she drowned. Why?
I could never shake the feeling that maybe this wasn't an accident. I'm not suggesting it was on purpose either. More like a mother who was tired, scared and alone. A mother who loved her child, but didn't know how to raise her and had no hope for her daughter's future. A mother who maybe, just maybe, had given up, checked out, gone numb. And for all the anger I had for her, all the hateful thoughts I had about her, now that I am the mother of a child whose future is as uncertain as Emma's, I feel so sorry for her mother. Because as ugly as this may sound, I have been in that womans wrinkled shirt and scuffed up heels. Feeling so defeated that fighting was no longer an option. Feeling so certain it would all be in vain, so why bother. Now I am not at all suggesting that I thought about harming my child. That would NEVER EVER happen. I am saying that there have been times on this Autistic journey that I have felt like giving up, feeling sorry for myself and just not trying so hard, or at all for that matter. I would be lying if I said I had never fantasized about a life without screaming and public meltdowns and injuries to other kids and off limits outings and vacations. Yes, I have daydreamed about it all. How nice it would be to pack the kids up for the weekend, take them to Disney and let them play along others as we watched from the side. How amazing to go to Target and checkout without Camryn biting herself and screaming in frustration because the cashier is scanning the dog bones. And how truly luxurious to sit out in the fenced backyard with all my kids, let them eat popsicles and play in the sprinkler with no fear of Cams pinching her little sister so hard she bleeds or pulling Masons hard so hard she falls to the ground. And though I knew nothing of Emmas homelife or her idiosynchrosies (sp?) I know the heartache her mother felt when the doctors told her Emma wasn't"normal" and I know the sadness her mother felt when she looked at her older daughter and knew that she would always be responsible for Emma when she and her husband were gone and if her sister didn't take care of her, who would? Who would love her like her mother did? And I know the exhaustion at the end of the day and the mornings you literally drag yourself out of bed, fearful of what the day might bring. And I also know the love she had for Emma. That undeniable, inborn protectiveness all mothers have for their young. The hopes that the best the world has to offer would be within her reach.
I think about Emma often. I go over that story in my head. And I see it all so differently than I did back then. Emma was Autistic. I'm sure of it now. But sixteen years ago, that word was not well known in society. There was no Autism Speaks, no puzzle piece bumper stickers. There wasn't half the information and interventions available today, not to mention the prevalance in the population. And even with all the resources out there now, I still feel so overwhelmed and helpless at times, so I really can only imagine how her mother must have felt. I wonder how she is today. I wonder if she is at  peace with Emma's death and how her life has turned out. I wonder if she was ever able to look past the heartache and frustrations and find the beauty and good in the little girl who was different than most. I wonder if she ever, just once, considered herself blessed to have the experience of raising such a child. I wonder if it ever crossed her mind that things might get better, that it wouldn't always be so hard. I wonder if she knows I still think about her daughter and that now it's more personal than ever. I feel for Emma's mother and wonder how many other's were/are just like her. I am so blessed to have such support from family and friends. To be able to talk with others and get a break and have access to good schools and therapies.   And although it is too late for Emma's mom, I hope that no one ever feels that they have to go through this quietly and alone. It's okay to talk about it, in fact, I find it necessary. It's okay to say it's hard and it's sad and it's scary and that yeah, at some times it really, really sucks! I think you can make yourself crazy trying to pretend that everythings okay, you've got it all together, you can handle this. It's okay to admit defeat, as long as you pull yourself up determined to win the next round. Raising Autism can be a real challenge with more downs than ups sometimes, but if you just go with it, really go with it, really experience it, really feel it, I think you will find it will be the most rewarding thing you will ever do in this life!