Yesterday was not a great day.

I had begun the day with tremendous hope! The doctor agreed with me that it was time to try an increase in Koby's Abilify. In five weeks of school, he had been formally restrained (because he has been a danger to himself or others) five times. On days that he hasn't had to be restrained, he has still had a bad day about 95% of the time. So, yesterday was the first day of the new dose. I just knew that it would work immediately! (In my defense, when I spoke to the doctor, she told me that we should see a difference pretty immediately.)

On my way to work, I called to speak to the special education teacher that works with Troy. I was concerned that his IEP was not being followed by one of his teachers. He came home with an unfinished assignment with a failing grade on it. It made no sense to me; he has an aide who helps him daily and the accommodation of extended time (1 day) for his work--in addition to other accommodations, such as reduced length and writing requirements. Our conversation was very positive in that he listened to my concerns, agreed that there was validity to them, and promised follow-up. I also called and left a message with the teacher in question, asking her to call me when she could.

Work was busy. As the day progressed, it got busier and busier, and that's when the fun began. Work is always my top priority when I'm there. Some days (okay--many days), however, I end up having to multitask more than usual, juggling phone calls or e-mails about the kids with the ever-changing responsibilities and challenges that come with my job. [Side note: I am blessed, blessed, blessed (!) to have a job that affords me the luxury of grace in taking care of my kids' needs.]

Troy's teacher called to speak to me. To sum up our lengthy conversation, she said she knew about his accommodations and apologized for having Troy slip through the cracks on this assignment. She said she would visit with the special education teacher to come up with some solutions. I explained to her that he needs tremendous supports in place daily in order to be successful.

While we spoke, I worked, splitting my concentration between our conversation and the work on my screen.

Later in the day, I received another phone call from the special education teacher. He had visited with the teacher
during recess, and they had come up with some strategies and plans to avoid what had happened. We had another very productive and positive conversation.

When we hung up, I looked at the paper in front of me. I had jotted down notes as we had spoken...and a line...and notes for a work-related issue that I was also concentrating on as we spoke.

Throughout the day, with all of the busyness of the work day and the juggling of phone calls about Troy, I still held onto a glimmer of hope that it would be a great day for Koby. I worried and hoped and thought and prayed and worried some more about how his day was going.

And then...the phone rang again. It was Koby's teacher, telling me that he had a truly awful day. He had to be restrained. Again. The room had to be evacuated of the other children. He was unable to calm down for over an hour at one point in the day. As she continued to relay the many, many challenges she had faced with my son all day long, I continued to stare at my computer screen and to do my damnedest to evenly split my attention between two very different thinking tasks and give them both the attention they needed and deserved.
And I could feel myself struggling and failing to do so.


The hopeful glow I had carried around with me all day was extinguished.

To make matters worse, I was supposed to have left work already. It was curriculum night at school, and I was going to be late. Obviously, I had to continue the important conversation about Koby, and I had to continue to plug away at my work. I could feel the stress level rise as I stared at the time on the screen, listened to the teacher on the other end of the phone, and wondered how much more work I could squeeze out before I left.

Eventually, we hung up, resolved that tomorrow was a new day. I closed down my computer and hurried to my car, frustrated that I'd be so tardy to the presentation at school. Still, I was determined to attend.

After curriculum night, I went home and helped put the kids to bed. Then, I cooked myself a box of macaroni and cheese, and Tom and I discussed the day. This ended up segueing into discussions of each of the kids' progress, long-term realities, medication side-effects, etc. This lead to me crying in anger and frustration and, if I'm honest, a little bit of hopelessness.

Later, in the shower, I was replaying my day. (I do all of my event processing in the shower.) I thought about every single event that had transpired, and you know what I realized? I clearly remembered a refrain that I had said under my breath over and over and over again all day long...."They're worth it."

I said it, I believed it, I knew it, and I reminded myself of it all day long without even realizing I was doing it. "They're worth it, they're worth it, they're worth it, they're worth it."

I carry that truth with me every day of my life. I don't care how much stress I have. I don't care how much juggling and multitasking and exhaustion I have some days. They are worth it.

 
 
I was doing so well with regular updates here! And then....I stopped. I will get back into writing regularly again! If I publicly commit like that, I have to do it, right?

I thought I'd write about Laura again today. Some of you are aware that in an attempt to motivate her to make good choices at school, I set a very high bar for her...if she could have 20 days in a row of good behavior at school, she would get her ears pierced. We got very close our first go around. If I remember correctly, I think she had 14 good days in a row! And then, she stopped.

So we began again. And again. And again. And again.

She started to get bad reports every day. In addition to bad behavior, though, she also was not doing her schoolwork. Previously, her academics really had not been negatively impacted. Sure, she might have to do her work in another room with an aide, but the work was done. That was not happening anymore.

We went to Open House last week at school. When her teacher saw us, she said, "I'm sorry I didn't have the chance to call you today." I replied, "It was that bad today?" Apparently, yes, it was. Her teacher told us that she has been completely unable to focus, has been incredibly hyperactive, swings her arms wildly, can't stand in line, plays in the sink's water (even rubbing the water all over her face), she jumps and twirls, the list went on and on. Her teacher expressed great concern that she was now struggling academically. 

At home, we have also noticed some changes. Laura has always walked high on her tippy-toes, but it has changed. She now prefers to walk on the knuckles of her toes. It looks incredibly painful, but this is her preferred method of transportation. She shows zero signs of discomfort and struggles to stop herself from doing it when we tell her to stop. 
She also makes strange noises with her throat and sinuses.  She suffers from severe acid reflux and has her entire life. I know what that looks and sounds like. This is different. We've also had some issues with a throat clearing vocal tic from ADHD meds. Again, this is something different. 

She bites her fingernails to nubs, picks and peels her toenails off, and refuses to let scabs heal. Here is a recent example of a scab that she has had for probably five months now. Warning: It's not pretty!
Picture
The scab itself is small--most of what you see here is dried, smeared blood. This was right before her bath one evening.
Her teacher has spoken to us about her scab picking before. She says that she tries to limit her to one band-aid a day, but then she ends up covered in blood, like this. We have seemed to find a way to help though--finally! Tom has been putting liquid bandage on it. It stings, and she doesn't like it. It's still not healed, but it's finally looking better. 

The way she was walking was so worrisome to me. I assumed it was a sensory-seeking behavior. She has always been fearless, impulsive, and constantly craving stimulation of some kind. I feared that she would now cause serious damage. I spoke to an OT (Occupational Therapist) while at Koby's ARD meeting, and she told me that she definitely would cause serious damage. 

I called our therapy company and requested an OT evaluation. It was conducted last week, and she will begin services in about two weeks. She plans to work on her fine motor skills and self-regulation skills. She may teach her how to brush herself. I'm eager for therapy to begin and am very hopeful it will help. She believes the noises she is making are another sensory seeking behavior--she suggested it could be a physical or auditory experience that she is getting from it. 

In the meantime, Laura has a psychiatrist appointment in two days. The major shift in her behavior came and continued after her last medication change. We are constantly trying to find the just-right formula for her. We are definitely not there. We are always trying to avoid the vocal tic from returning, but at this point, I'm wondering if the vocal tic may be something we have to accept if the medication is helping her to have better control of herself. We will discuss possible medication changes at the appointment. 

In addition, we are in the process of moving her out of play therapy and into cognitive behavioral therapy every week. It's a gradual process, but we are now having her in a weekly, one-on-one session. Before, she and Troy had joint or shortened bi-weekly sessions. I'm hoping that this will also help her.

All this to say--my beautiful daughter has some very real challenges. And though I am trying desperately to help her overcome them, some days, some weeks, I wonder if we will. I do know this: I love her far too much to give up. And I know she WILL get those ears pierced one day!