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Wednesday, January 15, 2014

Porcupine Prickles

We made it through the holidays. We spent great time with family and friends, and celebrated all our usual family traditions. All without too many meltdowns, so that was good. School has started back up, and of course our world has turned upside down with school starting back up. Some of us are really struggling.

Before the holiday break from school, I spoke with the school social worker who works with Ben about my concerns with the level of his anxiety at school. The social worker really got my Mommy Porcupine Prickles all up. She began by saying that first of all, there is no way Ben can fit his body into his locker. And if he did, another student would surely tell a teacher. And if he was crying at recess, another student would surely tell a teacher. She said she isn't sure what Ben wants my reaction to be by telling me these untruths. She isn't sure what Ben's motive is for telling me these things that couldn't possibly be true. At school he seems happy and isn't a behavior problem, so she's not sure what the deal is.

Excuse me??

First of all, when you're a social worker, especially at a school, I think you should be more tactful, respectful, and sensitive. This person has known my child in one setting for four months, I have known him for 11 1/2 years. Who do you think has a better handle on the nuances of Benland? And there are much gentler ways of saying you think my kid is lying to me in order to manipulate me. It makes me so irritated I wish I had been able to continue being a school social worker myself so that this wouldn't happen to other families.

I told the social worker that first of all, I have seen Ben's locker. She had said she had doubts that I had seen it. And if Ben wanted to squeeze in there, he would find a way. But that isn't the point. Regardless of whether Ben's physical body fits into his locker or he just thinks about how he needs to escape into it in order to deal with the stressors of school, it doesn't matter to me. Whether he sobs at recess, or tears up in a bathroom stall, or just feels like crying, doesn't matter to me. What matters is that my kid is struggling so much that, at home, he is sometimes in tears from the anxiety. He is eaten up from the inside out from anxiety. When he is overwhelmed by his homework, he puts up an angry front so that we have to spin our wheels trying to get him to calm down, instead of facing his homework. What matters to me is that I don't know how to help my child when he is not with me or able to reach me by phone. The social worker doubts that Ben is struggling as much as I think he is. Way to be social-workey, Ms. Social Worker. You're supposed to be our number one supporter and help my child deal with his stress at school, not be yet another strip of red tape, another person I have to convince of my child's (apparently invisible) special needs, in order to get help.

During our conversation, I got my anger under control and explained to the social worker what I'm seeing and what my concerns are. I said if you take away all of Ben's crutches, you leave him with no way to cope. He needs help. So we agreed the social worker will continue to check in with Ben. I told her it is not unusual for Ben to say that everything is fine at school and not ask for help. This is normal for Ben. He only asks me and Daddy for help, and usually only lets me into his heart to know how much he really struggles. But the social worker needs to let him know that she is there for him as a support if he wants it. That's all she can do, I understand. It's frustrating, but at least I got her to agree to see Ben, which is the least I can do for him at school.

I really struggle with how else to help Ben and Jonah with school. Like everything with them, they are not motivated by anything. Bad grades don't really bother them. Jonah is motivated by teachers getting upset with him, he wants to avoid that because he wants everyone to be happy with him. Ben hates it when teachers are "upset" with him, but it's not enough to motivate him to get homework done. So many times with so many things, people say to me "Just make them do           . Just MAKE them brush their teeth. Just MAKE them do their homework. Just MAKE them put away their important things so they don't lose them. Just MAKE them pick up their dirty laundry." Yeah right. Have you met my boys? It's virtually impossible to MAKE them do anything. It's like working with a minefield. At any moment, they can become overwhelmed or frustrated and explode. And then you have a major meltdown on your hands and life for the entire family grinds to a halt because you have to handle the one that is out of control. And they're old enough and big enough to not be able to MAKE them do much. I don't know how else to help them with life, other than what I'm already doing which isn't very successful. I hand them toothbrushes coated with toothpaste. Alex and I lead them through homework, hand in hand, one step at a time. Some days I have to help them get dressed. All this because I know they can't handle "normal" life. When we try to force them to handle it, they get completely overwhelmed and we get stuck in Tantrumville for up to hours. They just can't handle it. Over the years of being their mom, I've realized, and try to remind myself daily, that it is not my fault that they are this way. It is not because I'm a bad mom, or I didn't parent them right, or I do too much for them so they're lazy. They have neurological disabilities that make life very hard, frustrating, and overwhelming for them to complete daily living tasks many days. Sometimes they can handle these stressors that I take for granted easily, when all the stars align: when they have had just the right amount of sleep, when they are not sick at all, when they are in a good mood, when no sibling has frustrated them, when life feels easier to them. But honestly this rarely happens. Which makes me tired. Sometimes I think about what it must be like to have children who don't take 400 medications and vitamins and supplements, who don't have diet restrictions, who don't have behavior issues you have to constantly be prepared for. I wonder what that's like.

When I get down in the pits like this and worn out, I make myself look at all the positive things. Like this: Ben, Jonah, and Alex went to a camp with our church youth group last weekend. They were all very excited about the trip. The night they got there, it was a winter stormy night. The roads were dark and icy, cars were getting stuck, it took a lot of time and patience to get to the camp. They finally arrived safely. I got a call at 11:30 from Alex. He said Ben wanted to come home. Ben was inconsolable. I talked to him on the phone for a while, trying to calm him down. His anxiety was out of control. He insisted that he had to come home. When he is like this, I just have to keep talking and talking to him until something clicks with him and he is able to calm down. That night he was sure that if he went to sleep, something bad would happen to him or me. He missed me. He needed me. He wanted to come home to be with me. No matter what I said, he wasn't calming down. The fact that Dad was right there didn't make any difference. 

Finally, I said that sleep would be Ben's escape from worry. Nothing was going to happen to him or me while we slept. Instead, Ben's body and mind would rest, rejuvenate, and it's impossible to worry while you're sleeping! I said this over and over, and suddenly I could tell I'd found the Magical Thing that hit home for Ben. He started calming down. He eventually agreed to spend the night and see how things were in the morning. 

Ben had a total blast that weekend. He hung out with new friends and old. He got to do fun, crazy things in the snow. He got to worship in a different, awesome environment. He was so grateful that he had gotten to go, and stay, at the camp all weekend. I knew that Friday night when the guys called that this was an opportunity for Ben to work through his anxiety and succeed. I knew there was no way he could come home- the roads were too bad anyway. And I knew once he got through that rough patch, he would have a great time the rest of the weekend. And he did it. He was proud, I was proud. Daddy was relieved.

Last week, after fighting with the boys to take a shower for days, I finally lost it. I had even filled up the tub for Ben to take a bath! I yelled at them about everything. I get so frustrated and worn out, having to drag them through all the things that they should just be doing on their own now. So it was not a proud Mommy Moment. I said fine, be stinky and disgusting. I can't do anything else to convince you to take care of your bodies. I'm done.

The boys went upstairs to our bedroom, where they hang out and watch TV before bed. Later, they came out. Jonah had agreed to take a shower the next morning. Ben was all clean. ALL CLEAN!! He said he had wanted to surprise me. He had made Jonah watch the door so no one came in, and he hadn't let the water out of the tub after he was done because he didn't want me to hear the water draining and have his surprise ruined. He knew I would weep with happiness and relief. He knew just how to make my day. 

Sometimes there are beautiful, glistening moments like these that shine through the rest of the crud of our struggles. I try to focus on those things. Sometimes I even succeed. 

One step at a time. One foot in front of the other. My mantra. Time keeps ticking whether we're struggling or not, and these moments lead to other moments. We'll get through all of this, and more, right?

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