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Wednesday, January 16, 2013

The Squeaky Wheel

They say the squeaky wheel gets the oil. I try not to be an annoying, overbearing, aggressive squeaky wheel when it comes to advocating for my kids, but still firmly squeaky enough to get the job done. I've found that for me, at least, it pays to be respectful, patient, and honest. That's how I get the most done for my kids.

I think we're getting the Jonah Wheel good and greased up this month. He's just been struggling so much, in every area of life, for the past couple months. I try to wait and watch, try not to be too reactionary, and try to be patient while I wait for changes. Sometimes the holidays cause major chaos in my kids' internal ecosystems, so I waited to see how Jonah was once we made it through the holidays. 

I waited until Jonah got over all his lingering viruses left over from school during winter break. When Jonah is sick his whole body and brain are thrown off for weeks. 

I waited for the tweaks the psychiatrist made in Jonah's meds to take effect. Unfortunately, the tweaks that were made caused Jonah more anger and frustration, so we undid the tweaks. Back to square one.

I waited to see if the elimination diet that Jonah is on (as well as the rest of the family) would bring him relief from his tummy aches and behavioral struggles. The diet has worked wonders on Jonah's twin brother's behavior, but I haven't really noticed any differences in Jonah. His tummy aches are a bit less frequent, but still present. Mainly due to anxiety, we know. When you're 10, how do you know if your tummy hurts from your diet or from your worries? 

Two or three days a week I get a call from the school nurse. Jonah is in her office, upset, anxious, complaining of aches and pains, wanting to come home. After the holidays I sent out a team email to all the school people involved in Jonah's life and let them know how I want to handle Jonah's Anxiety Moments. I told them that unless Jonah was really ill, I was not coming to pick him up from school. Also, I didn't think it benefitted him to sit in the nurse's office for a few hours three times a week. I asked if the social worker would be available to see him when he is upset. I asked the teachers to check to make sure Jonah has the right homework so that doesn't add to his anxiety. I asked the math teacher if Jonah could meet with her one-on-one to get a little tutoring since math is a huge struggle for him. 

I also let the school team know what I'm doing on my end to help Jonah. He sees his counselor every week. This week I met with the psychiatrist about meds and we decided to change Jonah's anti-anxiety med since it is obviously not being very effective. We're still in the process of the elimination diet, and we'll meet with the nutritionist tomorrow to see what the next step is- how to add foods back in to our diet. Long story short, we're doing everything we can to make sure Jonah has everything he needs to be healthy and as happy as possible. Everyone is on board and on the same page, at school, therapy, and home. 

Yesterday Jonah had quite a struggle when it came time to get his coat on and get out the door to the bus. First, he locked himself in the bathroom. When we got him to come out, I made the mistake of letting go of him to help the other boys with their coats. Jonah ran upstairs and got into his bed, saying he was just going to stay there all day. Alex tried his best to coax him out. Finally, as the bus was about to pull up, I ran upstairs and wrestled Jonah out of bed. I wrestled my 10-year-old downstairs. He ran to the couch to take refuge from the day. I wrestled him into his coat and out to the driveway. I stood there in my pj's and slippers, shivering, looking at my anxious, sad, depressed little boy and wondering what else in the world I can do to help him. Life shouldn't be this upsetting when you're 10. Jonah got on the bus and ended up toughing it through the day. When I asked him how he did it, he said he kept thinking about how I had said in the morning that he couldn't go to the nurse and call me because I had appointments all day and couldn't pick him up from school. I could have used a visit to the nurse's office myself yesterday, with all my worry every single minute about how Jonah was doing and how I can help him.

It just so happened that yesterday while Jonah was having a total freakout about going to school, Aidan decided he'd jump on that bandwagon as well. He had his own little fit about school. Two brothers freaking out about school made Ben feel overwhelmed with stress and noise, so he was a little out of synch and made everyone more agitated by lashing out verbally. Ella plugged her ears against the Brother Angst and kept asking loudly if I could snuggle with her. Sometimes I wish there were 6 of me. At chaotic times like these, I just make a decision about who needs my attention immediately and most desperately, and work my way through the needy kids one at a time until everyone is eventually taken care of. I take one breath at a time and do the best I can to stay calm and keep working through the knot of chaos.

Last night when I put Jonah to bed I told him about all the ways Dad and I are trying to help him feel better. I told him about the new medicine we'll try. About how his math teacher will help him one-on-one. We talked about it all. I said that he shouldn't worry, something will start to work and he'll start to feel better. He asked if I was sure. He said "What if nothing makes me feel better?" I told him that no matter what, we'll keep trying. We'll keep working to make life happier for him. He smiled sleepily and said he loves me. It was a nice way to end a hard day.

This morning Jonah crawled into our bed saying his tummy hurt. I said "Just stop thinking about it. We're going to have a good day." Then he asked if he could take a shower!! That's never happened before. So he headed out the door into the world today a little bit happier than yesterday.

I'm hoping that all this squeaking of the Jonah Wheel will get him what he needs to just be happy and calm. After I wait and watch and see how things will play out, there comes a point where I have to jump into action and rally the troops around whichever of my little Wheels is squeaking. I pull in our team of teachers, therapists, psychiatrists, social workers, and doctors. I do research and spend every free moment brainstorming about how to help my child. It's exhausting but when it starts to pay off it's rewarding. I always wonder why it is that Ben and Jonah take turns being the squeaky Wheel. Every time, throughout their 10 years of life, one boy becomes more stable medically or behaviorally, the other boy falls apart. Why can't we get a little break where all four kids are just ok at the same time? Do we HAVE to always have one kid in crisis, for crying out loud? And if the answer is yes, could they just write down on the calendar when they'll each be going bonkers so I can prepare?

I'm hopeful that Jonah will start to feel better soon. It's been a long decline over the past couple months and the kid deserves a break. I'm grateful for the team of support we have who always grease up our little Wheels when they get squeaky. I'd be lost without each of these special people who help me take care of our kids when they're in crisis.

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