Thursday, September 26, 2013

Half a glass

I haven't blogged in 6 months. I started half a dozen posts that I couldn't finish because I was in a dark place. I've been desperately hoping for something good to write about. I have an overwhelming tendency to gravitate toward the negative in most situations. I am not trying to be a Debbie-downer. Often it can be a very helpful trait as a mom.

We all know that optimists see the glass as half full, while pessimists see it as half empty. I tend to take it a step further and expect that someone will spill their glass and I will have to clean it up. (Ah, the lessons of motherhood.) With this mindset, I am usually prepared for the worst case scenarios that can make or break an average day. But the flip side is that I have to work extra hard to find the positive side of a situation.

So, that is what I have been doing for the past 6 months. Jacob has made a lot of progress in speech and language therapy at Wolfsons. He is an excellent reader. He fully participates in his Sunday school group at church now. His favorite thing to do is play educational games on the iPad. Ever since his birthday, he starts many tasks with  "Mom, I am 6 years old now so I can do it myself." He is a great, if sometimes overprotective, big brother. Jacob had a great time at VBS and Rock Band Camp this summer. He is sweet, silly, and smart and I love him.

But we have had some big ups and downs with his medications and their side effects. One caused major anxiety and resulted in potty accidents and fear of going to the restroom. Every single day. At home. At school. At church. Everywhere. He would have to have help going to the restroom and needed constant reassurance that only his faith gave him. "I am brave. God and Jesus are with me in my heart, so I can be brave, right?" This is what he had to tell himself over and over for months, even after stopping the medication. This broke my heart a dozen times a day. My mental health began to verge on whether or not he was wearing the clothes I sent him to school in or not... And did I mention that Emily decided this was the exact same time that she wanted to be potty trained?

We have also dealt with a loss of appetite and weight loss, insomnia to the point where he has gone 36 hours without sleep a few times, and mood changes. Even after all of that, he still does better on the medications than off of them (believe it or not). I could go into lots of details here, but I won't. If you have questions about this part of our life, please ask me.

Jacob has a very late birthday and technically started kindergarten as a 4 year old last year. That combined with not being on grade level in every area prompted us to have him repeat kindergarten. I am sure this was the right decision. I prayed very hard for the right teacher for his second year of kindergarten. I thought our prayers were answered when he got Mrs. Wise, whom we have know since Jacob began his therapies in Pre-k. All of his work was coming home looking better than ever. No potty accidents. He moved his behavior clip up to the highest spot a few times.

We were thrilled. Everything was falling into place. I even shared my praise reports with church and school friends that often pray for Jacob. The glass was finally half full!

Remember when I wrote in one of my first posts that the process of finding out about Jacob's diagnosis was like standing in the ocean getting pounded by a wave that you thought you could brace yourself for?  Well, wouldn't you just know that as soon as I opened my mouth to say something positive, a huge wave knocked me to the ground? We got a letter from the principal telling us that he would have a new teacher starting the next school day because his teacher was "recruited by the district to teach for another school." What this actually means is that she applied for a different job and didn't get it until after they completed the first 12 day count, leaving 18 kindergartners and their parents very disoriented.

He got a new teacher that has a background in special education and I really like her. She is very organized and is doing a great job for being thrown into such a crazy situation. We got to know all of the support staff, too, including the new CSS site coach. I was really impressed that she called me to introduce herself and learn more about Jacob, even after she had met my husband at orientation.

The school year was just rolling along: Jacob was doing his work, his behavior clip was moving up most days, and we were settling into our new routine. My boss asked me how Jacob as doing and I got to tell her how wonderful he was doing in school.

Can you see the wave coming? (Or maybe someone just spilled their glass.)

We have a new side effect from the medication. Jacob cannot stop rubbing his head because the medicine, he says, makes him itchy. I got an email telling me what a difficult time he has had lately finishing his work because of the rubbing. She has tried several techniques and nothing has worked.
I don't want to switch medications because our next one to try takes a whole month to start working, if he responds to it at tall (many kids do not).

In the same email, the teacher responded to my request for the site coach's email address. Guess what? They pulled her to teach Kindergarten and now there is a new person on the job!  Now I just need to find some time to have a meeting with the principal to discuss how some of the choices made this year have weakened the special education department and keep hurting the children that need stability the most. This is Jacob's last shot at the good foundation that kindergarten provides and I am not ok with the lack of communication and the shuffling of teachers at the end of the first quarter.

Will it help? Probably not. But maybe before they make one more change to the staff helping my son they will think, "Oh no... We will have to deal with that annoying mom if we do this."

That just about sums it up. Every time I think things are going well, they get worse. I've been trying
to figure out how to help Jacob for nearly two and a half years. The victories are small and sparse. The setbacks and problems  come in all sizes but they never stop. Some days I am treading the water, but most of the time I am drowning. My only strength comes from The Lord.