Wednesday, December 17, 2014

Mourning the Loss

This Post Probably won't make much sense unless you read Sleep... It's not a Behavior Disorder.  This situation has really profoundly impacted me.   As I start to reflect on why it affects me so deeply there are a few reasons. ...
1. I am seriously worried about how this will affect Naomi psychologically. She is a psychologically vulnerable person. She's already has got puberty going on and that’s as much as I want to deal with. I'm certain that Ms. Supervisor is entirely too confident about how this can be handled if we see the kind of aggression we saw a couple of years ago. If, God forbid, that were to happen, Naomi is also much larger now than she was then. We wouldn’t be able to hold off on medication or just physically resist as we did before.

2. I had grown to like this lifestyle. I will mourn it when I'm lifting Naomi out of bed in the morning, figuring I’ll skip brushing her teeth because otherwise, we’ll be late. I'll remember that I used to have infinite patience prompting her to put her own clothes on as I shove her arm into a sleeve or do up her buttons, because there is no time or patience for prompts anymore. I'll mourn it as we skip the morning dog-walk - when there's no other dogs out and minimal traffic, and thus relatively safe. I'll mourn it as I hand her a granola bar for her to eat in the back seat, instead of making pancakes together. I’ll mourn the life we used to have when I pick her up from school at 2:30 wondering how the hell I’m going to fill the time until dinner.

3. This is the part that I haven't dealt with yet. I am mourning the trust and good feelings I had with someone I thought was a friend. The last time I saw Ms. Supervisor I said "I miss you! We have to go out for a drink some time!" And she readily agreed. We had never gone out for a drink, but we well may have. I met Ms. Supervisor –( let's call her Suzie, ) in a community park in 2012. Naomi, as usual, was touching a little girl's hair and she went to Suzie's daughter. I usually just shrug and say 'Sorry,' when this happens, but the little girl Naomi was touching that day was African American and I wanted to be clear that it wasn't the race of the girl that prompted Naomi to touch her hair, it was just what Naomi did. "She has autism," I told Suzie. Suzie lit up and smiled. I'm a Behavior Analyst!" She was very interested in Naomi and asked a few questions. I asked where she was working and she told me that she was a stay at home mom. She and her family had just moved to Ohio from the Atlanta area and she would be looking for work soon.
"Naomi goes to XYZ school" I told her "They are always looking for people. You should call them if you are interested."
A few months later I saw her with her kids at the Children's Museum. She said that she had gotten through stage 1 of the interview process and would be re-interviewed with the executive director soon. (You'd think they were hiring the CEO of the World Bank)
A month later there was a call on my answering machine. "Hello, my name is Suzie Supervisor and I'm the new Behavior Analyst at XYZ. I've seen you a few times around the community. It will be great to get to know you and Naomi professionally."
I was a little taken aback, because we were in AWE of the Behavior Analyst that Naomi had at the time (Sheila), and I didn't want to change to this new person (Suzie). But I had little choice and I figured we'd give her a chance. There were advantaged to this new arrangement. Suzie came to our house. While Sheila was wonderful, I only really related to her professionally. I respected Suzie as a professional, but I also came to think of her as a friend. When she came to our home, I looked forward to Naomi's 'break times'. There were like a social break for me. I enjoyed her company as we'd talk mom to mom about things. We lived in the same town so we’d discuss the local public school and its services (which we both had issues with.) Both our daughters were girly girls. They both insisted on sparkly dresses and had similar figures although Naomi was taller. So it just made sense for me to give Suzie the dresses and shoes that Naomi had outgrown. (I learned I had to do it surreptitiously. Naomi didn't like me giving her prized fashion pieces away. ) Suzie would gush over how much her daughter loved the clothes and I must admit, I enjoyed knowing that they were loved and cared for. When Suzie had a coupon she didn’t need and she thought I could use, she gave it to me. When we got a dog, Suzie gave me advice on how to work with him and told tales of her own dog. She helped me plan our trip to Georgia when the MRT study came up, we talked about the adoption course Stephan and I had taken and we’d see each other in various community settings. In short, we were friends.
Although our friendship went beyond Naomi, it was based on her. She told me Naomi was her favorite and I naively believed. She said that she LOVED going into Naomi’s classroom, because when she entered Naomi was the only one to get excited as if a movie star had entered the room. As with any involved parent in an autistic kid’s life, we occasionally had issues with the supervisor. Suzie would address them quickly and although we weren’t always completely satisfied with the outcome, we usually were. We always felt like Suzie listened to our concerns and understood them well. In short, we trusted her.
So last week, when Ms. Supervisor called and expressed such a strong resistance to empathize with our situation, showed such callous disregard for Naomi’s well-being, and exaggerated to the point where it came very close to lying…I was crushed. Crushed by the circumstances for sure, but also crushed to find out Ms. Supervisor had this cold, callus nature to her.
At first I made excuses for her. I was certain that someone above her was MAKING her do this. I was sure that she was painfully forcing herself to do something she really didn’t want to do because her job depended on it. But there were so many things she could have said that wouldn’t have changed our circumstances, but would just let us know that if it were 100% up to her, it wouldn’t be this way. At the end of one of our conversations I had said “I’m really sorry we have to go to war like this. I hope you understand, you’ll just do anything for your kid.” She responded with “K”. Not “It’s okay”, or “I’m sorry too. I’m just doing my job.” That would have been something, even if it left everything else the same.
When we pointed out that we had been given no time to prepare or make other arrangements she said it was “Unfortunate,” as if it were an act of God, completely unrelated to anyone’s conscious decision. No apology, no explanation, just “That’s unfortunate.”
When I relented and agreed to bring Naomi at a modified morning time, I think there was something subconscious in me that did it for the friendship. I had hoped to see a little of the Suzie that I have grown to love, but I really didn’t. Everything I had asked for got shot down except speech therapy – which was conditional on open times. Plenty other things were taken away. She, once again, made it clear that she thought that Naomi’s sleep pattern was just a behavioral issue. She acted like an authority figure that was standing her ground because she knew what was best. I felt entirely disrespected as a parent. She thanked me for calling, but because she “had a heavy spirit.” It was as if she was thanking me for coming to my senses, instead of thanking me for making sacrifices. She expressed no concern for how difficult this was for us. The overconfidence she expressed in dealing with any behaviors that may come up as a result of this change just made me feel worse.
So I’m mourning a friendship. It wouldn’t be the first time. I just usually can predict when a friendship is fading away. This one came clear out of nowhere. I can't trust Ms. Supervisor any more. Maybe it's best to find that out now.

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