Down to business

Last Thursday this was my office because sometimes when you are in Rettland you have to get down to business. Earlier in the week I found out that the school hadn’t finalized who Claire’s aide would be yet. With just two weeks until the first day and people who had never met Claire making the decisions, I panicked a little. I emailed the new director to try to explain Claire and why it would work better if they used the aide that she had during summer school. I was so nervous as I typed that I nearly passed out as I hit send. A day went by and I heard nothing. I called the teacher and left a message, desperately trying to get to somebody in the process. With a nagging feeling in the pit of my stomach I decided that the best thing that I could do would be to go and breathe and try to get a little perspective. I sat, perched over the gentle waves and tried to come up with some sort of a plan when my phone rang, it was the teacher. I told her my concerns, she listened and understood. We hung up, she called the district and I prayed, took deep breathes and tried to remember that somehow, it would all work out. It wasn’t long before she called me back and explained that the district felt pretty confident in their decision and that we could talk about it on Monday. That was hard to hear, I felt defeated but I couldn’t quit. As I sat on that bench, listening to the gentle waves I emailed the director at the district. My fingers flew as I typed out a plan to train the new person, if they were going to insist on that route, I would do my best to make it as successful as possible. I outlined what needed to be covered with our physical therapist, what it would take to learn to feed and toilet Claire and I also reminded them that the new person would need recent CPR training as last year the aide had to administer the heimlich while they called 911 for Claire. I felt peace as I looked over my notes and I hit send knowing I had tried everything. A few hours later my phone rang again, it was the teacher. She wanted me to know that after further consideration, the district had decided to hire the aide that I had requested, the one that knew Claire intimately. After hanging up I literally jumped in the air and clapped my hands, the tension in my shoulders melted away, my spirit soared. I did it. My job is to get people to understand Claire so that she gets what she needs and when I got down to business, I did it. That is why I rest, why I do what I do to keep my head clear because Claire needs me to speak for her and to do it well.

This process reminded me of a few things when it comes to advocating for your child. It is critical that you take action and tell whoever you are working with what your child needs. Don’t wait for them to come up with a bad plan, take a good one to them. Nobody knows your child as well as you do, the best way to work with everyone is to paint a clear picture of what your child needs. When you focus on what the child needs it is easier to see what needs to happen and the best direction to go in. Most importantly, this reminded me that I can do it and you can do it too.

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