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Thursday, August 29, 2013

Big Boy Hangers

So much happened last week! We packed into three days about a month's worth of activities. Ella went to her first Cheer class! She was beyond thrilled. She says when she grows up she wants to be a "pom pom girl and a massager." Can't go wrong with that! 
 Then I took the kids to Apple Holler to have one last summer outing before school starts. We had a great time, even though it was sweltering. We climbed in an wagon and got a ride out to the apple orchard where we picked about 200 unripe apples. (We were there for the experience, not necessarily ripe apples) I couldn't get the kids to leave! We had a snack, played around, looked at the farm animals. It was really a nice afternoon.

Tuesday we had therapies in the morning, followed by a psychiatrist appointment for Ben and Aidan. We talked about how Aidan has taken the summer off ADHD meds, and although he displays a lot of ADHD behavior, we made it through the summer pretty well. We increased his anti-anxiety med at the beginning of the summer, which has helped him a little bit in dealing with all his worries, but it has also made him a little less inhibited when out in public. Like he doesn't worry about running away from us in a crowded mall all the way to a store where he wanted to buy a toy. Eek. So some of the effects have not been exactly positive. 
Aidan started the same ADHD med that Ben takes. What was really interesting was that the psychiatrist showed me the chart of different meds and said that basically our boys are the minority because most ADHD meds do not work for them, or cause very bad side effects. I asked if you were a "normal" kid, not in the minority, if you took a medicine to help with your ADHD, would it be like flipping a switch and all of a sudden you would just be more focused, clearer, more in control? Would there be a night and day difference? 
The doctor said yes. If you react typically to ADHD meds, that is what happens. I told him that boggles my mind! Because that has not happened for us, ever, with any of the boys. The doctor said then that leads us to question their diagnosis and whether or not they actually have ADHD, or maybe they do have ADHD and are just extremely sensitive to medication and tend to have negative reactions to most medications. Who knows. Either way, it's difficult to treat our boys with medication because we have to try so many different kinds and most of them don't work. We always implement behavioral strategies too, and the boys get counseling of their own to work on strategies themselves. But we have needed a medicine component also in order to be more successful in treating our boys' diagnoses.
On Wednesday, Ben had to have a cardiology checkup to see what the results of his month of wearing a heart monitor showed. He had an EKG and an echocardiogram also. The cardiologist said Ben's valves are a little stickier than they were last year, but that doesn't really affect anything at this point. Everything else is the same as last year, so that is a good thing. It also tells us that Ben is really having panic attacks and these "spells" are not related to his heart defect. I explained to the cardiologist, in front of Ben, in Ben Speak, what Ben's fears are regarding whether he is having heart attacks and whether his heart defect is killing him. The cardiologist was awesome, as he has been for the past 11 years in dealing with our boys. He told Ben that his heart defect is not killing him and he is not having heart attacks. He may never need anything done to fix his heart. If he does need fixing, they may be able to work on his heart without doing open heart surgery. So the doctor put some of Ben's fears at ease. I appreciated that, especially right before we launched into the new adventure of middle school, which if anything could produce a panic attack, that would.

Ben and Jonah got to go to their new school, get their schedules, unpack their lockers, and find their classrooms. Aidan got to go to his school and do the same thing. He was so joyous about getting the 2nd grade teacher that Jonah had! I had hoped the exuberance would last a while, but it was gone on School Day #3. From the moment Aidan wakes up many mornings, he has some difficult behavior. I asked him what the problem was. He said he didn't want to go to school. When he hangs back from getting on the bus, looking apprehensive and reluctant, I take his little hand and lead him onto the bus steps. I am sure he is fine from that point on. Here we go again, with another year of school angst.

Meanwhile, Ella has been having more (normal) tantrums- trying to express her independence and being dismayed when it isn't possible to get her way. I know these are age-appropriate and not due to mental health issues or diagnoses of any kind, which is reassuring. But frustrating and tiring none the less. No one is sleeping well, I think due to worries about our new school year. And the thing that really sticks out to me is how mental illness (or any other diagnosis for that matter) doesn't take a vacation day. Is it your birthday? Bipolar doesn't care. Is it the first day of school? Depression doesn't care. Are you trying to have a nice family dinner to talk about the first day of school? Bipolar-induced rages just don't give a hoot. And usually, all the diagnoses that reside in our house become more pronounced because of the stress that is involved in anything out of the ordinary. So if it's someone's birthday in our house, the excitement and sensory input is even higher than normal, which leads to more exaggerated anger and frustration. If you're trying to sit and have a nice dinner with nice conversation about the first day of school, the anxiety the boys all feel about it plus being exhausted from holding in tics and worry and anger and sensory overload all day explodes in a mushroom cloud and there is no conversation at all. Only fighting. It does get exhausting. Why can't diagnoses just take a day off once in a while? Maybe once a month, just be on vacation so we can have a nice calm normal day? 
One big milestone: I gave into the constant battle with Ben and Jonah's shirts and bought big boy hangers. I've been fighting Jonah and Ben's shirts for the last size and a half, trying to manipulate the shirts into staying on little-person hangers. I finally gave in. I bought grown up hangers. How is it that my boys are so big? This is something that they should write about in all those parenting books- someday you will have to buy your little babies big kid hangers, and it will be traumatic and make you tear up at Target as you put the big white hangers into your cart. No more powder blue little person hangers. Now, granted, putting the boys' clothes away is much easier since the shirts actually stay on the hangers when put there! But it was a little sad for me when I had to make this purchase. I never thought about how there would come a day when I'd be buying big boy hangers. 
One foot in front of the other. In the next couple weeks we have a mountain to climb. Ella will start preschool. Before that can happen I have 2 meetings at her school. Therapies continue for all the kids, but at our school year times, which means we have to find a way to juggle homework too. Ben and Jonah are going to start going to our youth group meetings at church, which of course happen to meet the same evening that we have all our therapies scheduled, so we have to do some major rescheduling. Jonah and Ben have IEP meetings! I'm anxious about that, worried they won't qualify for the services I know they need. Aidan is in a defiant, anxious phase. Ella is in her normal, "independent" 4 year old phase. Ben is more angry than usual. Jonah is more reactive than usual. 


Sometimes life just feels like a mountain. One foot in front of the other. I told Alex the other night- we only have to get Jonah and Ben through six more years of school. He just about passed out at the thought of all the work ahead of us.

Middle school schedules, big boy hangers...what will come our way next?
Middle School Schedules!!

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