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Saturday, February 13, 2016

Energizer Bunny

So much has been happening lately, I haven't had a moment to write! You'll be happy to know that Jonah FINALLY got an IEP!!! The school team agreed that they now see him struggling academically as much as I have always seen him struggling at home. Whew. 

Of course I cried buckets at his meeting. It's my MO. I'm The Cry-er. 

I had a 504 meeting for Aidan in the morning. Alex was out of town that whole week. (Perfect timing. Not.) Aidan's meeting went well. We talked about more ways to support him academically, and also with homework. We added a few more supports so that hopefully his anxiety will start to decrease. We'll see how it goes. 

Then after lunch we had Jonah's IEP meeting. I didn't cry at all during Aidan's meeting! I was very proud of myself. And at Jonah's meeting, I started out just fine. I was worried. If he didn't get the IEP, I wasn't sure what in the world we were going to do. I was nervous. The team started reading through Jonah's evaluation. I was doing fine. We keep reading. And reading. And then comes the part about where he falls on different rating scales based upon how teachers, parents, and Jonah himself, see that he is doing emotionally, academically, psychologically, etc. How much is ADHD is affecting him, how social he is, all that good stuff. The first couple of rating scales, I was still doing fine. But the rating scales were color-coded. And it felt like there were a million of them. And they all basically said Jonah is tanking in almost every single area. 

I felt frozen in time. I couldn't even hear what the school psychologist was saying anymore. I couldn't understand the words she was using to explain the graphs. That said my son was doing terribly in so many ways. I fought back tears, I struggled to maintain my composure, I tried to swallow and breathe and take a deep calming breath and think about how I was NOT going to cry...

and then the team turned to the next page of the report and there was yet another graph, charting out how much my boy struggles...

and that was the straw that broke the dam holding back my tears...

and then I ugmo-cried. We're talking way past "ugly cry" here, people. It was ugmo. It was one of those trying-to-not-sob-out-loud-so-then-you-choke-on-the-sob-and-cry-even-harder-as-your-face-contorts-and-you-want-to-shrivel-and-die kind of cry. Bad. Really bad. And really mortifying.
 

When our sweet, supportive advocate whispered if I needed to take a break out in the hallway, I ugmo-cried even harder. The team stopped talking and turned to me. To watch me ugmo-cry. To make sure I was ok. I squeaked (because even my voice wasn't working right) that it's just so hard to see in black and white and red on these graphs how much my little boy is struggling. And failing. The psychologist smiled at me reassuringly and said that that's why we're meeting, to give Jonah the help he needs. 

I don't think I stopped crying for the next 30 minutes. Thankfully, the team just kept on going with the meeting and let me weep until my eyes were red and puffy and my nose was red and puffy and my cheeks were red and puffy. 

We did take a break eventually. I waited in the hallway of the front office to take my turn in the bathroom. And then one of the ladies from the front office- who knows me pretty well because I'm constantly there...with Ben's forgotten glasses. With Jonah's forgotten iPad. With forgotten books, and homework, and water bottles, and picking up sick boys...we see each other a lot. So this sweet angel walks down the hallway to me with a box of tissues in her hands. She gave me the kleenex and said I could wait in a room off the office if I wanted to. What I wanted to do was hug her and cry until there weren't any more tears left in me. I'm worn out from these meetings, from fighting for my kids, from being their watch dog 24/7. I was so touched by her kindness that I burst into MORE tears and mumbled something about just needing to go to the bathroom. I wasn't making a lot of sense at that point. 

On my way out of the office, the other sweet angel working that day held out her hand to reach mine, and clasped my hand with both of hers and said "Be strong. Stay strong." Which, you guessed it. Made me cry more. I said to her "Stop being nice to me, you're making me cry even harder." 

That's what I love about our schools, our community, my friends. Wherever I go, someone is there with a helping hand, a supportive word, and kind box of kleenex. I emailed my office ladies the next day and thanked them for being so supportive of me, and for trying to help me find calm and comfort during a very stressful time.

We got Jonah's plan all worked out, and I feel like he is going to have a great opportunity to turn things around and succeed, given this help. I'm so sad for him that things had to get this bad before we were able to get him help. But I'm looking forwards, not back. From now on, he has help and support. He'll be ok. We got what we needed.

The second day after Jonah's IEP was in place, I saw the stress physically lifting from his shoulders. I saw his heart fill with peace. I could literally see how much stress relief he already felt from having more support at school. Is life completely perfect for Jonah now? Not by a long shot. But at least we have accomplished a major milestone by getting him an IEP.

Aidan on the other hand...Aidan is such a mystery. We tweaked his 504 Plan so has more support at school. He has a math learning disability, so part of that is that he can't memorize math facts. He is able to use other ways of doing math- like using a calculator or multiplication table. He needs to learn the process of doing the math problems, but the facts themselves he can find through other means. A couple times he has refused to go to school, I think mostly due to anxiety. I'm hoping that with all these supports in place and the teacher really being supportive and on board with everything, Aidan will start to feel successful and less anxious.

Ben is off his medication that helps with mood stabilization and rages. Eek. So far, things are better than when he first went on the med. But life hangs precariously in the balance right now. I feel like we could take a dive at any time into Anger Crisis again. He weeps that he is doing the best he can, and I do know he is. But sometimes even when people do the best they can, they still need medication to help support them, because their best isn't cutting it. Sad, right? We're walking a tight rope, hoping for the best.

The other day, Jonah was standing by the front door with his coat and backpack on, about to walk down to the bus stop. Suddenly he exclaimed, "The bus is HERE!" I thought he was joking because we've never missed the bus. We're always out there on time. But he wasn't joking. Ben was in the bathroom still trying to fix his hair. I hustled him out, stuffed his arms in his coat, threw his backpack on him and pretty much shoved him out the door, all while yelling to Jonah to ask the bus driver to wait a minute. 

The funniest part was Ben. Typically, during the time before he was on the med to help his anger, Ben would have exploded in this situation. I was worried about how much to push him because since being off this medication, he's a little bit fragile in the anger department. He CAN NOT be rushed. Ever. His go-to speed is slower than a snail. In all situations. He loses his mind if he has to be rushed. So this whole incident was pretty incredible, because to my great joy, my boy did not freak out. He didn't get frustrated. He just let me rush him out the door. I watched from the window as Ben flubbered down the driveway. (Flubbered: a Carrie-ism, meaning to scuffle-run with arms and legs flailing- a la Phoebe from "Friends."  Also known as a hilarious shuffle-walk. Because you have a 50 lb backpack on and your mom says you must RUN down the driveway to the bus.) All the while Ben's flubbering down the driveway, he's yelling in a funny voice "But I didn't finish my HHHAAAAIIIIRRR!!!!! I didn't finish my HHHHAAAAIIIRRR!!!" It cracked me up and made me grateful for the day. The day I never thought would come a few months ago. You never know when Anger will appear, and you live in constant fear. When Anger does not appear, I rejoice. I rejoice in my funny boy, flubbering down the driveway, yelling about his hair. 

Ella started karate with Alex this morning. Since she was 3 and watched her brothers and Daddy doing it, she has wanted to participate. Her brothers all quit, much to Daddy's dismay. Ella believes she is not involved in enough activities. Dance, OT/Gymnastics, swimming lessons...that's not enough for our girl who loves to be busy. Daddy is delighted that she wants to try karate. I don't use the word "delighted" lightly- Daddy doesn't get delighted on a regular basis. But this morning, side by side with his little girl in their uniforms, Ella's hair just fitting back into a ponytail, Daddy was truly delighted. The class went great, and Ella was ecstatic to show us all the moves she learned already. Let's hope she sticks with it. For Daddy's sake, if nothing else!

That's life. It keeps going. Ups and downs and ins and outs. These kids keep me hopping. Aidan has to be checked for glaucoma. Ella may have it too- they're watching her. Ben has his annual cardiac checkup this week. I found out I have scoliosis (I absolutely hate the word "scoliosis." Hideous. I've decided it will be called "C Spine" in our family, because my spine is shaped like a C.), because I don't have enough on my plate, so I needed to add PT twice a week. That's just what I needed. Jonah's tummy keeps hurting on and off. Ben's hip hurts because he fell on some ice while on the school ski trip. Aidan's poop was green two days ago, which made him extremely worried. As much as Ella loves her teacher and friends, she is counting down the days until summer vacation. Every morning is met with a sigh when I answer her question of whether it is yet ANOTHER school day. We just keep going. Like the Energizer Bunny. Remember that commercial? "STIIIILL going!!!" That's us. Still going.

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