I know what it is like to be the mother of an Autistic child- I don’t forget ever, it’s impossible. We also get the added enjoyment of ADHD, Anxiety and Depression all diagnosed and rolled up into the most brilliant beautiful 16 going on 17-year-old girl named Irene. Sometimes though I just don’t think anything of it, it’s just a day like any other day. Some days are harder, some are easier- they just blend. I can’t even imagine how hard it is for Irene though.
It has been a while since we have had a complete meltdown, they look different today. I am not sure if it’s the 3 years of Social Skills classes, the 3 different psychotic meds she’s on currently or just the fact that she is getting older and the kids don’t pick on her as much? Maybe the world is becoming softer to the world of Autism? The stares have lessened, the kids teasing and poking fun because they know if they poke just enough she will start screaming uncontrollably and then the tears start- that is fun for some to watch. Please don’t talk to me about medication on such a young girl either, I struggled with it myself considering I am a recovering addict for so long and probably added undue trauma to my child by not easing her symptoms earlier. She has made great strides with medication, especially since she was diagnosed Depressive. Prior to Social Skills and meds what it looked like for us was borderline Schizophrenia and having done the research I know we are not out of the woods yet on that one. The silent giggles and laughter to who I do not know. I try not to worry, I have faith, but I live in reality as well.
Things we get to work on, and when I say we I mean Irene and myself- her father and siblings are very much in the picture but it’s just not the same. It’s Irene and myself mostly together against the world. Sometimes I forget that – I get wrapped up in life and the things I want to do as an adult. I forget that if I am not there she is pretty much alone, the truth is that when I am there she is pretty much alone too. I have to force her out, planned adventures that must have a lot of quiet time. That sounds so much like myself I cannot even explain.
At times I forget about the crowds and the sounds- I forget about Autism and Anxiety altogether. I fail. She is not like my other children. She is special.
I recently took Irene with me to an out-of-town convention that I had worked on for almost two years. I wanted her to see the sights. I wanted her to see what her mother had done, what took me away from her and my family on late nights and all day meetings, where I had dragged her to events leading up to and what for. I wanted her to see. I failed to recognize the commotion, sounds and fear that it might cause my child- I forgot. I knew I would be paying a lot of money for banquet meals she would not eat, I was paying for her to sit with me. Irene eats about seven different things and four of those are a potato in a variety of different ways. Before the meal was over she had asked to be excused to the hotel room and at that moment I knew.
I knew she had left her earmuffs at home, she had left her headphones which are actually her security in the hotel room- she had even left her knitting and her phone was dying. These are the things that comfort her. These are the things that allow her to join in with others, but allow her to escape at a moment’s notice. These are the things that sometimes, I say sometimes, stop her from pulling her hair out or mutilating her body by picking at imaginary things that are not there- scarring herself. I cannot stop these things from happening and I know she can’t either. It hurts. It hurts me that my daughter is hurting and I can’t help her. No one can, this is just our life.
You come to grips with it. This is it. These are the things she does. Will it be forever? Will she grow out of it? Who knows? My job – to try to remind her to stop pulling her hair out in a kind and loving way that does not seem like nagging bringing her to tears. To try not to cringe when I see the gaping whole on her chest that she has gouged out because she knows if it can’t be seen people won’t stare. The truth is they stare as she is doing it. Where? In class, at dinner out, in the grocery store lines and anywhere she gets bored at. I try very hard to let it go as she is doing it because I know it upsets her. I don’t think she’s aware she’s doing it- they have just become her new mannerisms. Such as when she bounces off the walls at home down the hall or the humming when things are going really good. Those are the things I look for, the things I know that when I see and hear I know everything is alright in her little world.
The struggle. With all of that there is an even harder struggle. The struggle that she looks just like everyone else. That she is smarter than so many her age. No one thinks she is different and they suggest just let her go, go run off and hang out with the other kids. I know better. I want to let her run and go hang out. I did once- I won’t do it again. Within an hour she had shot a gun and been kissed by a boy. A boy she had never met nor seen again. A boy who could have done anything and she wouldn’t have stopped it. Would she have? I don’t know. I knew better and I fail sometimes.
How do I trust the world with Irene? The tears well up as I type these keys. My child. The brilliant young girl who has her whole life ahead of her. As she gets ready for AP exams and SAT’s I secretly wonder to myself does she understand? She has hundreds of emails and letters coming for colleges, I am not sure if she even knows what any of that means. I have to remind her and ask constantly for more information. There is no excitement, there is no “normal” joy. It’s just another day and another college- the latest from Vassar.
I am both excited and afraid. How do I let her go? Do I let her go far or do I keep her close? The truth is I know already. None of it matters because she will either do great or she won’t- just like any other kid. There are no safe guards. I hope I can find a place where she is comfortable, where she will thrive. A place that will understand and be accepting. A place where she and I both feel safe. She will need help and that is my job as her parent to make sure she gets everything she needs! I know that! She can do it!
There was a time- a time when she didn’t talk. She stared blankly into the air, defecated on herself, cried uncontrollably and was inconsolable. A time where they said things like she will never be able to live alone, may be able to hold a part-time job with assistance. Well we are way beyond those times. We have grown and these are new times. I don’t have all the answers. I am trying to catch-up myself sometimes. So when I see other people who are just like us- I smile because I know. It’s impossible to forget.
The Chicken Lady