Experiencing Emily

Today, my son began indoor soccer at the local YMCA. One of the boys on the team is different- special...He is like my niece Emily. I thought it was wonderful that this boy was included and I remembered...

The first time I saw Emily, she was wrapped up in a hospital blanket, her cute face peeking out. He father was holding her, and my sister, my cousin and I all began to cry at once, overwhelmed at the miraculous joy of seeing her. Elle was a mother. My little sister was a Mommy now. Amazing.

The spontaneous tears surprised Tom and Elle. They surprised me. I guess it just proves that, though many people have children, each one is a miracle. Each one represents a lifetime of dreams that parents hope will be reached.

Emily is a special child. She has autism. She has delays and deficits in many areas. There are things she can’t do yet, things she doesn’t understand. It is not the result of an injury or illness. Traditional medicine has no answer to the question why.

Emily developed normally for about a year. Her folks noticed it appeared she didn’t always hear them, so her hearing was tested. Then I started to notice small things. Things she wasn’t doing that most children could at her age. But kids hit milestones at different times. A little delay was not of major concern. Her doctor thought she would catch up.

I remember telling Elle I thought there was a problem. I hated myself for even thinking something was wrong. But I was a pediatric nurse, and knew that the sooner Emily was evaluated, the better. Hopefully I would be wrong.

Elle asked me that day what the worst-case scenario would be.

“Autism”

The diagnosis that confirmed the suspicions came from a neurologist several months later. Now we knew “what”. We still don’t know “why”.

Ellen never smoked, drank or did drugs. She had prenatal care. Emily went for all her check-ups. And she was a healthy baby.

How could this not break your spirit?

Elle and Tom do an amazing job with Emily. But it is seven days a week, twenty-four hours a day. Tommy, a police detective, has a second job to help ends meet. Ellen is at home with Emily and her little brother and sister, full-time.

Together they are impressive. I am in awe of my sister’s patience. I see it every day I see her. What is it like to have an autistic child? I can only share the glimpses I get when I baby-sit for Ellen on the rare occasion that she goes out without her kids.

Some nights are easy. Emily has even fallen asleep on my shoulder, while playing with my hair. There are nights when I am able to understand what she wants, because she is pointing to the pictures on the fridge. I have even gotten a kiss and hug.

Small things. But huge events in the life of an autistic child.

The other days are hard. Because Emily cannot speak, I sometimes don’t know how to help her. I don’t know if she is hungry, tired, or frustrated. Sometimes she gets overloaded, from noise or other stimulus, and she cries and I don’t know how to take the pain away. It is a helpless sensation, for a child to be so upset and to not know the cause.

The hardest thing to watch is when she scratches away on both sides of her nose, until she bleeds, and to not know how to stop her. To watch this beautiful child who is locked away hurt herself… I want to help, but don’t know how.

I watch the kids for a couple of hours. Elle and Tom are with them all the time. I can’t begin to imagine how hard it is.

We hope for real progress in battling Emily’s autism. We are starting to dream for her future. Do we expect a miracle- no. But wouldn’t it be something to have this beautiful child released into our world, rather than trapped in her own?