02 December 2009

One of my sisters commented that I sound like our mother when I write about the need to clean -- well, she might have something there. Could it be that my mother's obsession with cleaning -- Martha could have visited on any day. She might not have agreed with the style, but it was consistent and clean! -- was her cover for other feelings. My parents weren't the expressive types, but the house was clean and there was always food to eat. That was never enough for me, and I've never looked beneath the behavior to find more.

For me, I know that this wild mood of making lists, bringing as much order as I can to our lives, and cleaning is what I must do to get ready for David's surgery. My thoughts right now are about doing what I think I must if the surgery was today -- getting phone lists and email lists to my circle, solidifying a contact for Cheshire, and getting a bag packed for Julia in case she needs to stay with someone. I have a longer list to accomplish but I am looking day by day. Somewhere on the list -- and I admit, towards the end -- is this cleaning that I feel compelled to do. Genetics? I think of it as a way to make it easy for people who don't live here to be here -- in the house -- and to make David's re-entry as comfortable as possible.

Crazy worry? Yes, indeed. But I have a list, and for me, that list of tasks is comfort. Learning is never linear. Spirals and roller coasters maybe.

Julia had a bit of an easier time getting into the school building today. Was it just the noise yesterday? Very well could be. And I wonder if it has to do with the drugs. The Guanfacine is supposed to slow her down some so that she can take in more of what is around her in an appropriate way. Julia is so very sensitive to sound, in particular the sound of metal against metal. She hates it!!! I know that it bothers her terribly to walk into school due to the sound of the metal lockers banging against each other and the general loud din of children. And I am talking about hate as in standing in one place with her fingers in her ears, eyes closed, and yelling about the noise. Not very effective, huh? However, she has refused to consider doing anything about it. I think that a great well of fear roars up and stillness is the best that Julia can do. Terror takes over and she is unable to bend her mind or body around any solution. She is a live nerve when she gets this afraid.

So, here is where the drug may be helping.

We got to school late this morning -- the bell has rung and the kids were lining up to go into school. I decided to bring Julia right into her classroom -- maybe avoiding a bit of the noise -- and headed for the far door of the building. She seemed to realize what was coming in a very visceral way and dug in her heels. Right away, I offered her the soft ear plugs that I carry -- been carrying them for months now hoping she would use them when she needed them. She refused and I offered them again. She accepted. (I'd like to see some fireworks going off right now.) I put them in and we went into the school, up the stairs, and into her room. One of the aides in her room noticed right away that Julia was walking in so comfortably. Julia put her stuff away, without help, got out her journal and started working. She kept the her hat on and the ear plugs in.

Was it the drugs? I want Julia to get to a place, with or without drugs, that she can understand that there are tools for her to use, strategies and help to overcome challenges like her sound sensitivity. I want her to learn that she is safe and that together we can figure out how to make her life pretty good.

These steps, that would mean nothing to the parent of a NT child like I was with Cheshire, mean the world to me. Each time Julia takes a step towards the world whether it be towards me, her teachers, or her therapists, I am excited for her and in awe of her bravery.

Now back to my lists.

3 comments:

Elaine said...

Good for Julia. I often wish for ear plugs too. And the cleaning? Ordering your world makes perfect sense. I clean like a mad woman before leaving on a trip - always. And when facing a deadline with writer's block. Good luck.

Anonymous said...

now i`ll read your rss

Anonymous said...

мне кажется: отлично!! а82ч