Monday, October 19, 2009

We Have Lift-Off

It was another busy Monday here. I feel like we're on a moving treadmill all day long. After dropping Romania at the bus stop and hurrying home to get ready for our weekly ES meeting, I got a call from Holland's school OT. She wanted to stop by to install some software for us. If you know anything about this software, you know that it took me about 8 months to actually track it down and get the school OT last year to install it on our computer. She always had an excuse of why it wasn't going to work out. Then the hard drive on our computer gave out and we lost all our CD installed software. So, gone was the Clicker 5. I mentioned at the annual IEP review that I would like to have it again and this morning she called wanting to come over. She knew we had our weekly meeting. She even changed the day she was working because Tuesdays and Wednesdays didn't work for us (how's that for accommodating?).

While we met with our ES, Ming Ming installed Clicker 5 and then showed me quickly how to navigate around to get started. She even offered to come over any time I needed help or wanted help with Holland's work. Such a change from last year's non-helpful OT.

After doing a bit of school, we left for Egypt's appointment with the orthotist. We barely got away with a shoe insert. She could have done a 1/2" insert, but then we would have to get an insert actually in the sole. They sand down the shoe and add the needed height. It starts at $90 a shoe and it would only be in one of her shoes. Plus she would grow out of them so fast. Insurance doesn't pay for this. They consider it cosmetic. Holland's inserts were covered because they are for his flat feet. I'm not sure how an uneven leg is considered cosmetic, but for now, we don't have to get the more expensive insert. Plus, now I have to get rid of all her cute shoes. Some of them are too shallow and she'll just walk out of the shoe.

We came home and did another paltry 30 minutes of school and then it was off to pick up Romania from the bus stop. We came home, I finished getting dinner ready, but we didn't have time to eat it (tired yet?) because I had to drop Romania off for handbell practice. Then I huffed on over to Bi-Mart to gets some Rx's and cat food. Egypt and Holland were just bouncing off the walls. Sometimes I just want to tie them together and string 'em along. It's just exhausting having kids with you while you're trying to run errands. I was hoping to pop into Goodwill and look for some jeans for the boys, but there was no way I was going anywhere else. Thankfully, Super Hero was home and he went to pick up Romania from handbells.

Tuesday looks to be even more tiring. Holland has his OT appointment in Portland; we have fencing class and I'm debating on whether I'll show up for speech or not. I'm going to have a speech evaluation for him at the same place where we do OT. I just don't think 20 minutes a week is enough and since we're already up there, might as well.

It's 6.52 and I feel like going to bed right now. Maybe nobody will miss me if I sneak off and lock my door. Yeah, right.

Monday, October 12, 2009

I Need a Personal Assistant

My life has become so complicated that I am now taking resumes for a personal assistant. The pay is what you'd expect - nothing! I'm having a hard time figuring out what I have to drop in order to continue being a sane person. I did not start out the school year thinking that having Holland take two classes would put such a snag in everyday life. But now I have to add a weekly occupational therapy appointment for him and a weekly physical therapy appointment for Egypt. She will need another cortisone injection and she has trouble gripping a pencil because of her affected thumb. She needs some intervention so her joints don't freeze up. Luckily I can do these two appointments at the same time. But it means driving into Portland and that sucks time from the already limited schooling time.

Tuesdays Holland takes Fencing class and I drop Egypt at my sister's house and take her two oldest boys to the class. I got a call from the Speech Path and we are trying to figure out when she will do the 20 minutes of speech that's on his IEP. Sheesh. Really? Only 20 minutes? Why bother? I'm trying to decide if I want to drag Egypt with me to another school building and sit in the office while Holland has his speech. And this could happen when Romania has no school on Fridays. I am thinking about driving out to Springwater, letting Holland have his speech session and work in Romania's class. But in order to make it to Egypt's new handchimes class (did you see the video? She just LOVES it!), I would have to leave Springwater before school is out.

I'm running out of daylight hours to do everything. None of this scheduling dilemma takes into consideration all the trouble I'm having keeping Holland on task. He argues about absolutely everything. Keeping him focused is near impossible. You'd think I was asking him to walk on hot coals when I ask him to write something. All he wants to do is sit and listen to me read. We are reading "Mattimeo" out loud. It's the third book in the Redwall series. We read history out loud and he draws while I read. I read all his science out loud. Do you see a pattern? I'm exhausted and feel like I accomplish nada on a daily basis. How's that for feeling motivated? I'm beginning to think that someone else can do a better job. Romania complains almost daily that he doesn't like school and wants to come home. I ignore Egypt all day long. I do NOTHING with her. People are freaking out that I don't have her in preschool. That's just what I need. One more place to drive to. I just shoo her out of the school room and once in a while let her sit on the floor and try to attend to two kids. Holland gets so distracted and can't do anything on his own. If I try to help Egypt, he walks off or sits and complains that I'm not helping him.

If you want to feel real good about yourself, homeschool a kid with special needs. That'll put you in your place.


Thursday, October 8, 2009

Handchimes class

Romania did a handbells camp this summer. He loved it so much, we are now doing a Monday night class. The instructor asked how old Egypt was. I said she'd be 5 in a few weeks. She invited her to join a hand chimes class for younger kids. Here she is (Holland decided to try it too - he's in the green shirt)

Thursday, October 1, 2009

A Busy Bee and the Rheumatologist

Today is a very hectic day. After I dropped Romania at the bus stop, I came home to drop Holland with my mom and take Egypt to her rheumatology appointment. Holland has a ceramics class on Thursdays, so my mom took him there and I drove to Emanuel for Egypt's appointment. After lunch, I have Holland's annual review IEP meeting, pick up Romania, then drive up to Portland for another doctor's appointment at 5. I'm tired just typing that all!

Egypt's rheumatologist said that she has two more joints affected. He checks the affected joint each appointment, but also checks non-affected, because it can happen fairly quickly. He noticed a slight deviation in her jaw. He measured how far she can open her mouth - which was good - but her jaw deviates to the left. There is no swelling so far, but we have to come back in 2 months (instead of 3) to check it again. I went to an information meeting one time and saw the horrible things that arthritis in the jaw could do to a person's face. I'm totally freaked out by that. She also has a thumb affected. He actually thinks it may have been affected before and he didn't see it. But the way it moves makes him think that it's not a recently affected joint. So we are now looking at the possibility of polyarticular JRA because of the smaller joints involved. She was diagnosed with pauciarticular JRA because of the larger joint and only being one. If a child has bigger joints involved, it's more likely that it will stay pauciarticular. But now that she has smaller joints affected, the diagnoses has changed.

We also have to look into getting lifts for her shoes. Her right leg is growing faster and each time we go in, there is a bigger discrepancy in the difference of length. Now there is over a centimeter. He's afraid if we don't address this, she will continue to keep her right leg bent to compensate for the length difference.