Grief is like Another Child

20130205-092247.jpgHearing the cars outside just highlights that I need to get to sleep. The moonlight peeks through the blinds in our bedroom. I need to sleep. I do not know when she will wake me up. My four-year-old has a horrible sleep track record. Most nights I take the midnight shifts to let my hubby be rested for work.

Today was one of the bad days in our world of autism. She did not sleep last night so the morning ABA session did not go well. She screamed to leave. When I took her to preschool, I did not expect it to go well. An hour later I had got the call from her aide that she was inconsolable. I went to get her early. For the rest of the afternoon and into the evening she wailed. I had no idea how to help her. She does not speak so it makes it even more heart breaking. I hate myself for saying how much Autism can suck.

At that moment I said it in my head, the tears rolled fast. I turned away from my husband to try not to wake him. I balled my fist into my mouth to muffle my sobs. It took several minutes for the tears to stop. It is like I lost someone I never knew. Only we do not have a funeral. Grieving about it gives power to the feeling that it is like another child. She is my daughter and I will do anything for her. Right now I accepted the grief so I can move forward and be the mom she needs in me.

In Your Face Autism

shopping cart

The blood is racing through my body to the point I think it is going to burst my veins. My hands grip the shopping cart handle as I whisk us away from the older man. I feel light, euphoric even.  Surreal does not even begin to describe it. For once, I said the right thing at the right time.

Minutes ago my four-year-old raced ahead of me in the grocery aisle. She accidently bumped an older gentleman’s basket. He was not hurt at all. I caught up to her as she raised her arms to indicate for me to pick her up. I scoop her into the cart. The man that she bumped came up beside me and grumbled that those kids should not be contained but punished for what she did.

Without taking a breath I looked at him and said, “ Did someone teach you to be an asshole or does it come naturally?”

Walking away, I am stunned at what I said. For years since my youngest was diagnosed, I bit my tongue when ignorant comments or unsolicited advice would be dropped in front of me. I am not trying to be on a soapbox and make everyone be aware of autism and it’s many gifts and challenges.  All I ask is that she be given the same respect as others expect her to give them.

I do not swear or call people bad names very often. I want to show my kids that mom does use her words. In this case, I do not regret standing up for my kid, who doesn’t know how do that for herself. Ironically, I did not see that man as we finish our shopping. I pack up the car and buckle her in. She gives me a big kiss and hug. Her direct eye contact is a new gift. Maybe she knew what happened just now and she is thanking me in her way. Never mess with a Mama Bear. In your face Autism.

Isolation and Labels

 

Watching my five-year-old tear around the school playground after school makes me ask myself if I was once that carefree. I realize that I must have begun for the first ten years of my life. I have small memories of after school play dates and skating club parties. That all changed the summer before I entered the sixth grade when mom died.

I remember clearly my first day back to school. I was asked by the teachers to help the librarian while the class continued on. Shortly after, I told the librarian that I had to go to the bathroom. I snuck back to my classroom door and saw the entire class gathered around the teacher. I heard the words, “Her mom died.” Stunned, I went back to the library and was excused to go back to class after an hour.

When I entered the classroom and walked to my desk I could feel all their eyes on me. No one spoke to me or looked at my eyes. From that moment on I had a label, Motherless Child. For the rest of my school years I had a hard time making friends. I still hear the whispers as I passed through the playground about how my mom died. The calls to play diminished fast. I felt like a circus freak.

As I became an adult and began working full time, I made few friends. I felt like I forgot how to make a friendship work. Yes, I had my husband who became my best friend instantly. I also had my younger sister who is still one of my best friends. Yet, as her older sister there is only so much I can dump on her emotionally. I continue spending my life protecting her.

When I became pregnant for the first time, I went into research mode. We have very little family around and I wanted to make sure that my child grew up with people to call friends. I joined a mommy and me group. All the babies were close in age. While on maternity leave we got together several times a week. We have shared a bond in motherhood that stuck through the years.

As our youngest showed global delays, it became harder to meet in groups. She would stick out with her differences, especially in her speech delay.  Her older sister wanted to go do pre-schooler things like water parks and indoor playgrounds. Her younger sister could not handle large crowds. I had to turn down invitations because I could not handle the stress it caused my young one let alone me. I had to watch her every move.

As she was finally getting the assessments for autism more friends faded, just when we needed moral support. I don’t blame them. We just could not do the things ‘normal’ families could do.  And then, magic happened. We made new friends, and new acquaintances became fast friends. They helped in ways they may not have realized. Also, entering the world of autism opened a new support system. Everywhere I looked there was the label of Autism and it felt okay.

My youngest comes over to me wordlessly demanding to be picked up. I scoop her up and look for her big sister.  I see her off on the swings with a school chum. Instead of telling her it’s time to go home, I give her a five minute warning. A compromise. It is so hard to balance both girls’ different needs. The best gift I give them is labelled simple- Love.