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Saturday, April 27, 2013

Skinned Knees

Yesterday while we were waiting for Aidan to finish his therapies, Ella and I went outside to enjoy the sunshine. She was happy as a clam, being able to run up and down the sidewalk. If she's running, she's smiling. 

Until she took a bad fall. 

And scraped the skin off both knees pretty badly. 

And cried bloody murder and bled bloody drops. 

All over my skirt.

Here's the crazy part- once I had assessed her injuries, I was relieved. Relieved that her injuries were only skin deep, yes, but also relieved because skinned, bleeding knees are easy to fix. Easy to see what the problem is, and easy to mend. I know exactly what to do for skinned knees. I know exactly how to comfort my little girl when she has an obvious owie. It was a relief to know, for once, what was wrong AND how to fix it.

I was surprised as this feeling of relief flooded me. I realized that so many times I'm searching for clues as to how to help my kids, and it's like I'm feeling around in the dark without a flashlight, trying to figure out what's wrong and how to fix it. Where do you start when you know there's something different about your child that needs to be addressed? Who do you turn to when your kids won't sleep? Who will help you when your little boy cannot comprehend two-step directions? I'm constantly watching the kids- for changes, improvements, declines, reactions to medicines, mood ups and downs, illnesses...it's exhausting sometimes. 

So I was happy when my girl had an easy owie that I could fix. Of course I was sad for her that she was hurting, but I'd take skinned, bloody knees any day over all the other things we struggle with on a daily basis. Things that are so very complicated and unknown and confusing. Things that overlap- is my son irritable and moody because he has ADHD? Or because he has Tourette Syndrome? Or is it because of his mood disorder? Or did he just not get enough sleep? Or are his meds having negative side effects? Or is he having sensory issues because of the change of season? Or because a tag is bothering him? Or is he getting sick? Or is it just because he's got siblings who bug him? Or maybe he's anxious about something that he can't verbalize, and the only way he can get help is to be grumpy and mean.

I'd take obvious, bleeding knees any day. 

Sometimes I'm tired of thinking and investigating and problem solving. Let's just have an obvious owie that Mommy knows how to fix. It's a little crazy when a toddler's skinned knees bring Mommy relief.

Wednesday, April 17, 2013

House for Sale!

We've decided over the past couple of months to sell our house. This is a big decision for any family, and one that comes with extra worries when you have kids with special needs. We debated for a long time, but finally decided that it was a good time to move. We're staying within our current school district, the kids will still go to the same school and have the same friends. We can continue to get therapy at The Therapy Tree, Ella can still go to her dance class and gymnastics and preschool...so hopefully we'll find a little more living space within the same community. 

Alex and I explained to the kids after Spring Break that we were going to pack up our house and sell it, and then find a bigger house to move into in our town. I was worried about the boys' reactions, but they handled the news well. I could tell Ben was pondering things, but I let him percolate a little and didn't give him more information than he needed. I knew he'd ask questions as they came up. And he has. I was really concerned about one thing in particular- painting Ben's room. A couple years ago I painted a mural all over his walls of a jungle scene, and then we got tiger posters to hang- Ben's favorite animal. He had stars and clouds painted on his ceiling too. In the past when we've asked if he wanted to repaint his room, he has adamantly said NO. I knew we needed to repaint his room in order to get the house as sellable as possible. Ben and I talked about it, and he said he understood, and I could do whatever I needed to to his walls and ceiling! What?!? Is this really MY Ben? When I needed to pack up his room and declutter it, he said that was fine and I could pack anything I needed to. The kids are really being so flexible! I think it does help that they know we are not moving far, and their friends will still be around. Our home will change but our community environment will stay the same.

Aidan said once that he didn't want to leave his friends on our block. I told him we can drive him over when he wants to see them. He said "I don't like driving. I like walking." Well. There you go. Other than that there haven't been any complaints about the packed up house. The boys keep asking which house we're buying. I keep explaining the process. Over and over and over.

I have been feeling a little manic and a lot stressed, these past three weeks since we decided for sure to sell the house. It was brought to my attention by a very wise soul that I apparently work well under pressure. Everywhere I go, people say I look so calm and collected and like I'm not stressed at all. Inside I feel like I'm going CRAZY!! So when people say that I'm super surprised. Because I feel like everyone can tell I'm going CRAZY! 

I gave myself a deadline of two weeks to pack the house and make it sellable. It will end up being three, but I think that's pretty good. If you had seen our house three weeks ago, the house now is barely recognizable as ours. We hadn't gone through things for ten years. I have thrown away and donated so much stuff, I can't even believe it. It feels so good and spacious and clean to be in our home now. But a little empty and without personality. I have been brutal about packing- everything goes in a box and into the garage. We're going to do this right, one time, and hopefully the house will sell soon and we can unpack in a new home and make it ours.

Once I'm done freaking out about getting the house perfect to sell, I know some nostalgia will creep in about leaving our home. We have so many great memories here. But my hope for our family is that we will have a little more room to stretch out in a new home. The other night, Jonah was having a meltdown. He did a great job of recognizing that he needed time alone, so he said angrily that he was going to his room. Unfortunately, he shares a room with Aidan, and unfortunately, Aidan was already in bed and asleep. So I couldn't let an angry Jonah go in there and wake up his brother. I told him I was sorry, as his body went limp from despair and anger and depression. He said fine, he'd go to Ben's room. Luckily Ben was ok with that, since he was doing something else in a different room. I just felt bad that my boy who is finally, sometimes, understanding what he needs in order to self-regulate wasn't able to give himself what he really needed: time in his own sanctuary of peace. So that struck home for me even more the need for our family to have more space, hopefully for each child to have their own room. 

I feel spoiled saying I want each of my kids to have their own rooms. I know we are so blessed to be able to have the home we have, let alone look for a bigger one. But then I also know that our kids can really benefit from having their own spaces to decompress in. When the boys are agitated, being around people just doesn't work. So when I start feeling spoiled, I just remind myself that this move is for the benefit of our family, who would really get so much out of having just a little more space to live in. A little more room for peace.

A new chapter is coming in our life. As of Monday, we'll be looking for a new home! I love adventures, even when they're a little scary because you don't know what's coming.

Wednesday, April 10, 2013

504 Meetings

Today I had Jonah and Ben's 504 Plan meetings with their school. I was pretty nervous because although some years I know how the meetings will go, this year I wasn't sure. I felt like there were a lot of areas we needed to cover, and a lot of areas I needed to fight for on the boys' behalf. 


This morning as I was getting ready after my shower, wondering as usual if I was dressed ok, Ella turned to me from where she was sitting on my bedroom floor and exclaimed "Mama! You look wonderful! That means you look beautiful!" 

Wow. I took that as a sign that I must look decent at least, if I had made an impression on my toddler. I was so grateful for her in that moment. I needed a little support and my 3 year old was there for me.
Ben's meeting was first, and since the boys will transfer to the middle school next year in 6th grade, the principals from both schools were at the meeting, along with a 6th grade teacher, the current teacher, the math teacher, the social worker, and psychologist. I was a little intimidated at first by the crowd of people, but then I remembered I used to run these meetings as a school social worker, and all the people gathered around the table were there to help my boys. So I decided not to be nervous about that at least.

It has been a very frustrating year for us this year at school. It started off with a mixup, and the boys' teachers were not made aware that they had 504 Plans. We got that all worked out eventually, but I feel like there has been a lot of miscommunication and inconsistencies throughout the year with the accommodations the boys are entitled to receive. Ben's teacher spoke about how much progress he has made this year, how he has gained maturity. All wonderful things, and I'm so proud of him. I had to put my foot down on a couple of modifications the team wanted to make to Ben's plan to eliminate some accommodations that I feel he still needs next year. But we came to an agreement and I feel like Ben will have the support he needs as he enters middle school next year.
Then it was time for Jonah's meeting. Jonah's teacher is now on maternity leave, so he has a long-term substitute. She is still catching up on what is going on with Jonah, and didn't know much about his 504 Plan. It surprises me that these important plans don't get passed directly to the substitute teacher in these instances so that there can be some continuity. Like last week, the teacher wrote on Jonah's spelling test that she would start marking it wrong if he wrote a capital 'B' or 'D' where it was not supposed to be capital. His previous teacher this year had let that slide because it's part of his ADHD and Dysgraphia diagnoses. It also happens to be in his 504 Plan that small mistakes like that are not to be penalized. But the sub hadn't gotten a copy of the 504, so didn't know that, so Jonah was freaking out about all this and his anxiety was even higher. For no good reason. So we ironed that out today. Among other things like that.

I'm so proud- I only cried twice during the meeting. A new record! We started talking about Jonah's extreme anxiety, and I was telling the team how I see him hurting so badly and we're trying everything we can think of to help him and it's just not working and he's a mess. He's just falling apart, and has been all year. I asked if the team can evaluate him for an IEP so he can have more support, and they agreed he may qualify under the "Emotional Disability" portion of the IEP. They don't have time to evaluate him this year, so he'll be at the top of the list next year. 

The social worker really advocated for Jonah having an IEP also, which I so appreciate. She sees him weekly, and talked about how much school he has missed and how his anxiety is causing him such distress, it's just very hard to watch. Everyone agreed that Jonah is such a sweet boy it's very difficult to see him hurting so deeply and suffering with anxiety like he does.

We worked out a plan for Jonah next year that involves more support from the behavior specialist, quiet rooms for him to take tests in, the ability to use computer programs that enable Jonah to speak and the computer writes what he says...things like that. I feel like we have a plan that will hopefully help eliminate at least some of Jonah's extreme anxiety. 

The psychiatrist had wanted to know from the school also whether they felt Jonah was focusing well or not, wondering if we need to increase his ADHD medication. I asked the teachers and they said Jonah often gets "stuck" zoning off and can't get back on task. So no, they don't feel like his focus is where it should be at this point. Man, it's a bummer to hear things like that, when all you want is for life to be easy for your kid and for them not to be hurting and to be successful at most things they try. It's enough to make you want to cry. So I did. I cry every year, the team is used to it by now. We've been doing this since the boys were in Kindergarten. They have tissues ready when they see my name on the calendar. I just feel so overwhelmed by the magnitude of the boys' struggles at school, and by the compassion that I feel radiating from the people who share the table with me at those meetings. It just all makes me feel vulnerable, as much as I hate to cry in front of people.

Today was our Therapy Afternoon. Gotta love Wednesdays! All my kids get tune ups. Tonight Ben is getting a massage that incorporates different oils to release toxins from his body and center his energy. So Alex picked up Jonah, Aidan, and Ella after therapy, and Ben had requested a date with me at KFC. We have never gone there but he's been stuck on this KFC idea for days now, so he asked his counselor and PT if there was a restaurant in the area, which luckily for him there was. 

So Ben and I went off in search of fried chicken. It was so refreshing to have some time to focus just on Ben. He is absolutely hilarious, he totally cracks me up. After eating some of his chicken, Ben leaned back in our small booth, sighed a deep sigh, and stated "This restaurant is remarkable."

Yes. KFC is remarkable. This from the boy who asks Grandpa if we're flying first class to our Spring Break destination, and whether a stretch limo will drive us to the airport. I'm glad my kids are still bowled over by the simple things in life.

Ben and I had great conversation tonight over our "remarkable" dinner. Among other things, he reiterated to me how he doesn't 'get' sarcasm. His friends think this is hilarious about him, and he sees the humor in it too. He asked me whether I was being sarcastic after I made a comment, then proceeded -without waiting for my answer- to tell me that when people "do" sarcasm he just doesn't understand it. He tells me this about four times a week. We also talked at great length about his favorite show, "The Big Bang Theory." He thinks Sheldon's character is hilarious and now has even more of the quirks of this guy than he did before he started watching the show. Silly boy.

Today was a hard day. 504 Days are always hard for me. But I guess you have to mull it all over, put it in perspective, and plug along. It'll take me a few days of stewing to get to the point of acceptance, but I know I'll get there. In the Grand Scheme of Life, I think it's just as important to be able to find joy in the small things, make your Mama laugh, and love your own quirky sense of humor, as it is what math class you're placed in in 6th grade. We'll get through 5th grade, then 6th. We'll give the boys everything we can every day of every year to help them be happy and successful. We're lucky to live in a country where a big group of people gather at a table every year to talk about how they can help our boys cope with the challenges of school.