Be not afraid

Got a call from my Mum today. She has this way of telling me bad news. She asks how I’ve been, listens, and sighs heavily when I finish. That’s how I know its going to be bad news. I don’t often pick up on social/emotional ques but Mum is a creature of habit (like the rest of my family). Its nice (in a way) to know that bad news is coming before its said.

My grandmother has (probably) less than a year to live. She’s 85 years old and for the last ten years or so her health has been failing. Its only been in the last five years that she’s begun to actively die. It started with a heart attack that led to a stroke that lead to her losing sight in one eye and experience full body muscle weakness. She has low blood pressure and osteoporosis. The osteoporosis leads to abnormally high levels of calcium in her blood which is not just bad for her bones but also her heart. Three years ago she was diagnosed with a kind of cancer of the blood. The only way she will ever be cancer free is if she has a bone marrow transplant but she wouldn’t survive such a harsh procedure. Her heart muscles are atrophied and her heart is actively leaking blood. A pace maker could be put in but it would only stop sudden cardiac arrest. It wouldn’t really solve any problems. It might extend her life but no one can say for sure. She doesn’t want to have the surgery and I respect her decision.

My grandmother has been a fixture in my life since the day I was born. I was very jaundiced at birth and had to be put in a light box immediately. No one could hold me. My grandma prayed and sang to me. Both my parents worked long hours and if me and my siblings weren’t at school we were at my grandmother’s house. When we’re sick she gives us Sprite and eggs and refried beans. Tortillas were her specialty. Her tamales were a Christmas treat I looked forward to all year. Spanish rice, picadillo, and conchas overflowed at her house. She’d bring home a peppermint for each of us when she came home from work. She never forgot and she never miscounted. She was the first person in my life to respect my food sensitivities. She’d make my portion without onions. It took a few minutes more but it wasn’t a burden for her. She knew what I liked to eat. She would challenge me to try new things.

“Try a bite mijita,” she would instruct. “If you don’t like it I make you some eggs.”

Sometimes I liked it. Sometimes she’d make me eggs. She never got mad at me for being a “picky eater”. As long as I tried and didn’t waste food in her house everything was okay with her. As long as I was eating I was healthy.

“Jita,” she would say. “Don’t shake your hands at the table. You’ll get food on the floor.”

No yelling about quiet hands. Just a direction and a very logical reason for it.

“Jita,” she would say. “You need to listen at school. You need a high school diploma to go to college and I want to see you walk the stage.”

I was still mad at my teachers and confused by my classmates but Grandma wanted to see me on my special day. So I learned to put up with it.

“Mijita, when others are mean to you show them your beautiful smile,” she instructed.”They want you to be mad or sad. If you smile you confuse them. Then you come tell Grandma about your hurt.”

And it worked. Bullies stop picking on you if you just don’t care. I would tell Grandma if I was hurt or mad at their words. And it would be okay because Grandma loves me. And Grandma would always love me. There are so many of us (me and my siblings) but she had a way of talking to you that made you feel like you were the only one in the world. Because to her, you were. There was no other granddaughter like me and she thanked God for me every day. My birthday is in December but she would always buy me two presents. Because my birthday was as special as everyone else. Sometimes she would buy me a small one person cake. it would have reindeer and Christmas trees on top. It was my little cake. Just for me. Only for me. And she always remembered my favorite was chocolate.

When I left for college she was sad and scared. But she smiled and cheered me on. I was going to get my degree, the first in my family. She prayed to Jesus that my “school mind” would be open and that the library would be too. The first time I came home from university I went to visit her as usual. She looked so much smaller than I remember. So much weaker, so much sicker. For the first time I realized that my grandmother was going to die. That one day she simply wouldn’t be there anymore. I was so sick with the knowledge that I could hardly stand to look at her. My grandmother had been strong her entire life. She raised her sons alone after my good-for-nothing grandfather abandoned his family. In a time when women had no voice she and her sister worked menial jobs to buy their own home. Any obstacle could be overcome with hard work. Everyone had a skill that was special and could be used. Everyone’s life was important because they are a child of God.

She is a very, very religious woman, my grandma. Pious and as true a believer as there ever was. But her belief was never a weapon. She never tried to put the “fear of God” into any of us. Not even the time I nearly burned her house down. She just reminded us that God loved us. She wanted us all to be Catholics but she loved us no less if we never joined the church. She prayed her rosary quietly while we would nap when we were young. She thanked God for each of us by name. We were the sum of all her prayers, her reward for faithfulness, and proof, if only to her, of the loving God she leaned upon.

I joined the Catholic church in my early twenties. It is a fact that surprises many as I am generally logical and rational and religious beliefs tend not to be. Grandma brought me to the church. I saw the peace and joy it brought her. I saw the comfort religious beliefs could bring. I hoped to find that for myself and I very much did. My faith wavers often but that is just the nature of the thing.

My grandmother faces death with a serene smile. She is comforted by the love of God and His promise. She has lived all her life to be able to go home to His Kingdom and knows that the family members who have gone before her wait for her there.

I want her to go there. I know that she is tired of being in pain and she is tired of being sick. She is tried of hospitals and doctors and needles and pills. I want her to be at peace. Much of who I am today is because of her. Much of the peace I find in my life is because she so patiently taught me how to get there. She has always accepted me exactly for who I am. I have never been strange or weird or tiring to her. I have always been her Janna and I always will be.

I just really, really wish she could stay here with me always. Because I’m not done needing her to remind me that I’m perfect and wonderful and that I am a precious gift from God. I’m not done being her granddaughter. I don’t want her to go. But I know she’ll be waiting for me.

The Three Whys (of my autism)

Why do I have autism? When I was diagnosed I never asked myself that question. From what I knew about autism (and what I’ve learned since) the cause of autism is partial genetics and mostly still unknown. It is a neurobiological disorder that definitely has a genetic component but what that component is exactly isn’t known. Studies have found anatomical differences in the brains of some individuals with autism but by no means all people with autism. Brain scans have found differences in the way the brain of an individual with autism reacts to certain stimuli but this is a correlation. Causation is not found in any of these studies. Like any disorder that effects the mind the why of autism is bound to be incredibly complex. I am the only person in my large immediate family with a diagnosis of autism but I am not the only one to display autistic characteristics. Looking at my family objectively, I can identify traits of autism in my father, two of my brothers, and two of my great aunts (my Dad’s aunts). My father grew up in a generation where a diagnosis would only have been made for someone with a very profound mental disability. Someone like my Dad who was successful in school and never a behavioral problem wouldn’t have drawn attention. My brothers were probably never identified for the same reasons. They both had excellent grades and never caused any problems. Both of my great aunts come from a background of profound poverty. Neither of them went beyond junior high and when they were young the most profoundly disabled were hidden away and forgotten about. The elder of my great aunts was born in 1922. We’d come a long way by the time I began attending school in the 1990’s.

I got good grades in school but I caused a lot of problems. I had a pathological need for routine and sameness. Any deviation from the norm lead me into a spiral of panic and anger. I had psychical and verbal stims. I still do but trial and error has taught me when and where not to engage in them. I have sensory issues. Certain things, like sand, are intolerable to touch for me. Touching denim is worse than having teeth pulled. I see the rapid flickering in florescent lights that some do not. I can also here the constant buzz all florescent lights make. I can’t not hear it. I’m sensitive to change in temperature. My  kindergarten teacher described me as “aloof; distant; struggles with social skills”. In the first grade I was referred to the school counselor. A report she gave my parents states that I had an “odd manner of speech”. I was “socially immature, inflexible, and naive”. My speech was so delayed that my Mom took me to the pediatrician. He assured her that I was fine and need to be encouraged to talk more. So many, many signs.

So why was I not diagnosed until my 20’s? Part of the reason is that Asperger’s Syndrome wasn’t recognized as a diagnosis in the United States until 1994. I was ten years old by then. Another part was the fact that, like ADHD, autism was a boy’s disorder. Girls with autism were extremely rare and displayed severe intellectual disability and most often engaged in dangerous self injurious behavior. I was reading at a college level in the third grade and kept my mild SIB a secret. One of my earliest memories is my Mom telling me that she never knew when I was happy because I never smiled. So, being logical and practical, I practiced smiling in front of a mirror and reminded myself to smile whenever someone around me smiled. Everyone loves a smile. Basically I learned to adapt. I loved to read and always made sure to have a book with me at all times. If you’re reading people rarely interrupt you. If people didn’t interrupt me then I wouldn’t have to struggle with social situations. When you’re a girl who is very quiet everyone seems to see you as very polite. I couldn’t upset anyone by saying something bizarre or rude if I never spoke. I knew that I was different and that something about me was very, very “wrong”. So I learned to hide it. I compensated. I did my best not to stick out. My grandmother drilled into me how to speak politely to an adult and I used that script, improving on it when necessary. If I daydreamed in class, well, that was hardly a problem with my grades.

So that leaves the third why. Why me? I’ve never asked myself that question either. When I was diagnosed I was incredibly happy. Finally a name for and a description of this thing I had always known was there. I was autistic from my very beginning. From the womb to the tomb, yo. I have never not been autistic. I have had parents ask me “Why my child?” My immediate, but never spoken, answer is “Doesn’t matter.” To me it truly doesn’t and I find it hard to understand why it would. If a child is nonverbal, aggressive, and/or engages in dangerous behaviors like elopement or severe self injury I guess a parent would want an answer more concrete than “genetics…mostly.” I will never be a parent because I know that I lack the capacity to be a competent one so I guess I’ll never be in the position to ask that question. There was never a time in which I have not been autistic. It was no surprise to me and my diagnosis caused me no pain and much joy. But I lived with my autism for 21 years. The only thing that had changed for me was this thing had a name. I do want to understand though. When I work with a child with autism I am working with their family too. If any parents read this I’d love to hear from you.