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Wednesday, November 13, 2013

3 Minutes of Boredom

For about three minutes last week, I was bored. Actually bored. There were no sick kids to pick up from school. There were no rages happening. There were no teachers letting me know that my kids were having challenges. There were no therapies to go to at that one moment in time. I told my dad I thought I might need to get a job because boredom and I just don't mix. He said if I was bored for a good solid three months, then he could see me getting a job. Otherwise, he said, just wait. You'll have another crisis before you know it. Of course my Daddy was right.

Last week I got an email from one of the boys' teachers saying that she was very concerned about the fact that they had book reports due in about 4 days, hadn't read a book, one of the boys hadn't even chosen the book, hadn't completed the report, and are currently both failing her class. She said she was "passing the assignment of the book report off" to me, in hopes that I would be more "convincing about the importance" of this assignment. I wrote back and said that I have been trying desperately to get the boys to read a book. I try desperately to get the boys to do anything and everything they are supposed to do in life. Showers, homework, therapies, clean underwear...This is not a laziness issue for the boys. This is lack of executive functioning skills. The boys struggle like this in every single area of their lives, from daily living skills to academic to emotional. This is just how their brains work. No amount of arguing, wheedling, pleading, yelling, bribing, cajoling will ever change this. Believe me, I've tried all those things. Many times, I work way harder trying to get the boys to cooperate with whatever I think they need to do than the effort it would take for them to just do it.
I can tell the staff at school are getting frustrated with the boys. Jonah's social worker had a chat with him this week and he felt she was very tough on him about homework, completing it, turning it in, working hard, etc. These are all skills that need to be improved upon, but that will come with time and practice, not chewing my kids out. A teacher recently told the boys they were failing her class anyway, so it didn't really matter if they turned in their worksheets or not. 

I can tell the staff at school are going through the process I have been through, where they're trying different approaches with the boys to see if anything will get through to them to motivate them to finish their work and get it together. The teachers have tried the compassionate, understanding approach. Then they've moved on to the tougher approach. They've being firm, yet encouraging. They're edging on scare tactics now. Telling the boys they will fail, no matter what they do. That it's not worth turning in late work because they won't earn enough points to make the assignment worth doing. I understand these tactics because I've tried them all myself. I can't blame the school for doing these things. But nothing works unless the boys themselves feel invested and motivated. The boys are just the way they are. Their brains are doing the best they can. The fact that they get overwhelmed when asked to brush their teeth and put their shoes on tells me there's a good chance they're overwhelmed with 6th grade academics also. It's not a question of a cognitive disability. It's an executive functioning, frontal lobe, disability. They're doing the best they can. And, sadly, their best is not currently good enough to meet the expectations at school.

Which is why tomorrow we are having IEP meetings to see if the boys will qualify for more help. I got the reports from the school psychologist and the boys test in the average range overall for everything. Every test. Every evaluation. There are some minor concerns here and there that dot the horizon of how the boys are perceived to function at school, but overall, they test average, act average, hide their problems so they appear average. I'm happy about that, it is a true blessing that the boys have enough courage and strength to make it at school without completely sticking out. But I'm very concerned because the school sees the external things that happen with the boys, but the internal things come out only at home. Because of the boys' anxiety, stress, feelings of being overwhelmed at school, when they get home they let it all out and let me in to see what a ball of nerves they are from holding it together all day. I can see they're disorganized, confused, overwhelmed, discombobulated, and exhausted. This isn't an ok way to get through your school career.

The other thing that really worries me is the fact that the boys have such poor immune systems because they were so premature. They miss a lot of school. A lot. Sometimes it is due to anxiety, but for the most part it is due to illness. It's hard to explain, but the boys have such sensitive nervous systems it seems, that any minor illness makes them feel completely horrible and they can't function at all. So although their fever might be only 100 degrees, they feel like it's 107 and they're dying. They can't concentrate or focus. They feel they can't survive at school. They come home and shrivel into the fetal position for as long as it takes to feel better. Even if it's just a cold! Jonah has come home sick three times in the past three weeks, including today. I took him to the doctor, who said it's not strep. They're doing blood tests to check for mono, among other things. The boys are just always sick. Last Friday, I had to pick up Aidan AND Jonah from school because they were sick. I never know when all my plans for a day will have to be thrown out because a boy is sick, yet again.
When the boys feel sick, they can't function at school. When they miss school, they feel more anxiety. They miss more work. They get behind. Which makes them feel more anxiety. Which makes them want to avoid school. Which makes them feel more anxiety. It's a vicious circle that I can't break for them. I am doing absolutely everything I can think of to boost their immune systems and help them be healthier, but it doesn't always work. I want help from the school with this. There has to be some way to help the boys keep up with everything even though they miss a lot of school.

I'm nervous about our meetings tomorrow. The bottom line is that I want more help for the boys so that I can see that their level of daily functioning at school is up to par with their cognitive potential. That's not too much to ask, is it?

Last week I got another email from Aidan's dear teacher. She let me know that for the past few weeks, Aidan has really been struggling with focus. She reminds him to pay attention, and sometimes that helps. But he's struggling. I told her that I'm frustrated because I'm doing everything I can on this end to help Aidan. He's on vitamins and supplements and medications. He gets an essential oil blend for ADHD on the bottoms of his feet before school (when I remember). He has fidgets and chewies. He gets all kinds of therapies. At some point, I realized, I'm doing all I can do. The rest is up to Aidan's brain. And I also realized, his brain is doing the best it can. I'm priming it for success, and this is what success looks like for him at this point. He's doing the best he can. The teacher understands this, and I told her I appreciate so much how she keeps me informed. It helps me get a whole picture of how Aidan is doing, so I can be a more effective advocate for him.

Last but not least, little miss Ella has a bit of a diaper rash type deal going on, even though she's long past diapers. So convincing her it won't hurt to pee, and it won't hurt to take a lovely baking soda bath every night, has been like TORTURE. Mostly for me. And also for her. Why don't kids believe me? After the first night when she had succeeded at going pee and I had put her in the bathtub "the hard way" and she realized it wouldn't hurt, Ella said "Mama. You were right." I said I know! You have to believe that I will always tell you the truth! If something will hurt, I will tell you! She said "I know. You never joke me." That's her way of saying 'trick' her. My kids should know by now that when I say something won't hurt, it won't! Crazy kids. How old will they all be when they finally realize this??

Not only have there been crazy things like teacher emails happening recently, but there has also been the normal level of crazy: yucky behaviors because kids are sick and so more crabby and irritable. Kids being even more overwhelmed than usual with demands like put on shoes, take a shower, do your homework. Kids fighting with each other more than usual. Kids fighting with neighbors more than usual. Kids refusing to eat meals, take meds, brush teeth, put on clean socks...I'm worn out. 

As one of my friends said recently, it's the thinking about everything your kids are going through that exhausts you. Yes, it's the running around like a chicken with your head cut off too, to all four kids' therapies, doctor's appointments, psychiatrist appointments, school appointments, extra-curricular stuff, etc. But man, the thinking can get to you. I spend the majority of every day, I think (no pun intended!), just thinking about my kids. About their disabilities and special needs. About their medicines and behavior programs. About their dietary needs and sensitivities. About therapies. About supplements we should maybe try. About school. About what I can say to convince school that the boys need more help to be successful. About anything I can think of or research about that may help any one of them with any one little thing. I think about it when I lay in bed at night and can't sleep because of worry. I think about it when I'm stopped at a red light. I think about it in waiting rooms. I think about it in the shower. I think about it when I'm tying their shoes in the morning. It's exhausting! If I was paid to brainstorm about my kids and their special needs, I would be a wealthy, wealthy woman.

My dad pointed out I don't do well with boredom because I thrive under stress and pressure, and am good at multi-tasking all the unique challenges our family has. Thank goodness I listened to his advice and didn't run out to apply for a job last week during my 3 minutes of boredom! Because sure enough, we've been bombarded by our usual level of chaos. Maybe even a bit more than usual. I just keep telling myself once I get through the meetings tomorrow, I'll feel wonderful and light (assuming I get what I want) and I can take down Fall decorations now that we have snow and put up Christmas ones with joy in my heart. (Don't tell my mom I've already been listening to Christmas music. For some of us, the holidays can't come early enough or last long enough!) And just move ahead to the next challenge that next week will bring us. 

Once I get through the meetings tomorrow. And Jonah gets better. And Aidan starts concentrating better. And Ben picks a book for his NEXT book report. And Ella's rash goes away...at least there is no more boredom around here. Those three minutes were uncomfortable and miserable for me. But maybe a little peace and boredom would be ok once in awhile. Maybe like two minutes.

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