Tuesday, October 27, 2009


"Mom! Why are you killing me?"

My daughter just left for school.

For the third time this year, we are recovering from head lice. One would think I must have been doing something wrong. I wasn’t treating correctly. I wasn’t combing enough. I wasn’t washing enough. I suppose if the occurrences hadn’t been spread out longer than the gestation period, I might suspect I had missed something. My mother had a home daycare for nearly ten years. I’ve seen my fair share of head lice. My daughter having it for the third time is not likely attributed to our negligence.

It is infuriating that since I originally went to the school nurse and principal to bring this to their attention, not so much as a generalized note has been sent home with kids. After two months, I got a note yesterday, in a building miles away from my daughter’s school, my son’s daycare has their first reported case. At least they told everyone.

What have we come to? A school doesn’t feel they can or need to send home a note. Why? Mornings like this I get so mad that the fleeting and perhaps insane thought goes through my head: “ I know! I’ll march into the school and demand they do something to let other parents know. If they don’t do it, I’ll sue them for conspiracy to unnecessarily torture my daughter.”

O.K. I will never do that. But when your daughter screams for an hour every day, like she is dying and you’re the only one doing anything about it, it gets to you. She screamed at me this morning, "Mom! Why are you killing me?"

I’m writing about this because my daughter is diagnosed with Asperger’s Syndrome. With this, we have the misfortune of sensory integration issues, specifically tactile sensitivities. Early on, we were very lucky to be closely linked with a sensory integration clinic. Sarah received SI treatment regularly and we worked through the bulk of it.

What we still struggle with is the sensitivity in her head. Along with the defensiveness, she has a lot of hair. It isn’t just that it’s a lot. It’s the kind of hair that is 90% straight and 10% spring curls. If you don’t know what I mean, let me just say that it’s the kind of hair that makes tiny impossible knots just by looking at it. It has a mind of it’s own.

To my daughter’s horror, I had to break down and cut her hair a couple of years ago. It just became too much to deal with. She couldn’t comb it or rather refused to and I wasn’t getting any volunteers to comb the rude, swearing little girl’s hair. As her mother, I felt traumatized. Every time I combed her hair, it was like another day of torture; it was like another day of driving a wedge between us. I felt like our hearts were breaking and for what?

Having her hair cut devastated Sarah. Yes, devastated is the word. While we all know what it’s like to have an undesired haircut, to kids with ASD, it can seem like the end of the world. Sarah views all parts of her body as something she can’t live without. On another day, perhaps I’ll tell the story of what it was like training her to do number two.

After the hair cut, we pledged to do better. We bought better conditioner, better brushes, combed the night before, piggy-tailed, you name it. And now, two years later, her hair is getting long again. It makes her feel happy. How do I keep up with this lice problem? How do I tell her I might have to cut her hair off again?

Can you imagine what this all must be like for her? She thinks I am hurting her on purpose. She thinks her mother is cruel. I am not guessing. She tells me these things. If you know a child like mine, than you know she believes it. Sarah has an extremely difficult time reconciling the difference between the fact that I have to do it with the alternative of not doing it and what the consequences are. She feels excruciating pain caused by someone she is supposed to feel safe with. This sucks.

I sat at the table this morning feeling quite helpless. Even as I write this, I know that some people will read it and perhaps think I am over reacting. I also know some of you will read this and know exactly what I mean. I guess my goal is to share this story and hope for four things:

1. That someone who is struggling with any of these issues, and doesn’t know why, will seek help.

2. That someone who is struggling with any of these issues and relates, will want to also share their story. It feels good to not be alone.

3. That someone who reads this might want to make some suggestions to me or anyone else dealing with this kind of thing.

4. That it will help me move on with my day.

Until next time, Terry

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