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.

Sunday, March 3, 2013

Hard to say

It is after 10 pm on Sunday night and it is freezing! I snuck into Emily's room to make sure she was warm enough. Despite sleeping with 4 blankets, she is rarely actually "covered" when I check on her before I go to bed. Jacob went to bed later than usual tonight but I was surprised to find him still awake when I opened his door.

I decide to lay down with him just for a few minutes. He has one of those Twilight Turtles that cast stars and a moon on the ceiling. There are three color options for the stars and I'm so glad he likes the calming blue stars. Emily likes the red ones because it is as close to pink as she can get from her turtle, but the harsh red glow reminds me of staring at an alarm clock.

"Everything is so hard for me."

My heart breaks into a thousand pieces, as it comprehends what Jacob has just found the words to say.

He starts to talk about things at school, a computer center and a listening center, listing different things that are hard. I'm trying to remember specific details but it is a blur. I'm listening to him but I realize that the main reason I feel something physically crack deep inside my spirit is because my worst fear has been realized. I've said those words to people before, usually through tears: "Everything is just so hard for him." But I've never said it in front of him.

And now he's realized it, too. To hear those words come from his own mouth, in such a sad, resigned tone... it is just too much.

I hold him and tell him that I know things are hard but that I am going to do everything I possibly can to  help him learn and grow and be happy. I remind him of all of his teachers at school, at church, and therapy that are doing their very best to help him. I remind him that God loves him very much and will always be there to help him.

"I promise that things will get better," I say. The words feel hollow, almost like a lie because I know that things will probably get worse before they get better.

I wonder what it would be like if everyone in my life was trying to change me? How would I feel, how would I act? Would I be angry? Would there come a point in the day where I would just say, "No- I am done." Would I be sad? Would I overreact to things?  Yes, yes, yes, yes, yes. (Anyone want to take a guess at some of the issues we are currently trying to help Jacob cope with?)

It looks like I just got a lesson in compassion from my 5 year old by looking at the world through his eyes.

And suddenly I feel better about my promise that things will get better. If nothing else, I have gained a greater insight into Jacob's heart and that is where all real change, any change worth fighting for, will happen.

Thursday, January 24, 2013

Detours and dead ends

I haven't written in awhile. I was waiting until I could write a really uplifting, positive post about Jacob's progress since our new diagnosis. The specialists at UF told us that he has a mixed receptive and expressive learning disorder, not autism. In short, this means that he communicates and processes things like a 4 year old instead of a 5 year old.

Here is the quickest recap of the past several months that I can manage:

  • September 20th: Diagnosis from UF & begin process of trying to get a speech/language therapy evaluation at Wolfson's so that Jacob can start therapy.
  • October 17th: Meet at Jacob's school to have his IEP revised to include language therapy. (Free, convenient, and included the possibility of being seen more than once a week.) It is a process to collect data and evaluate if his problem is a need that could be met with extra help in class or warants therapy, so we were told that it would take a few months. I didn't want to wait, so after giving my written consent to start the process with the school, I still pursued the private route.
  • Found out that the school didn't place him in an inclusion class like we were told that they would. His teacher is actually referred to as a "ghost teacher". But changing classrooms at this point would be a nightmare so we just all try to make it work.
  • November 1st: Started dealing with major anxiety issues and inappropriate behaviors on a daily basis. In one night, I went from having a child that was happy to sleep on his own to having a kid that absolutely wouldn't sleep without me. 
  • Called the UF "specialists" and were told to get him therapy 30 miles from our house, weekly. Therapy. For a child that cannot express himself or answer even the simplest "Why?" question. NO.
  • November 14th: Met with the pediatrician to figure out what to do, including the possibility of medication. He advised us to wait it out on the meds, start the language therapy before even considering therapy (which he agreed would be a waste), and use some behavioral management techniques to improve the behaviors.
  • Thanksgiving break: After we returned back to our normal schedule after the break, it was as if something had clicked inside of Jacob. He was calmer, happier, and gradually started sleeping on his own. His behavior was just much better and I wasn't the only one who noticed. 
  • November 26th: FINALLY get an appointment at Wolfsons. He gets accepted for therapy, and I was told that we might want to consider Sensory Processing therapy as well. He has always had sensory issues, but they keep getting brushed aside in each diagnosis because they seem to be getting better with time. I decided to start Speech first, and hopefully after he was in speech at school, we could start the sensory stuff at Wolfsons.
  • December: I wrote a note to Jacob's school when his progress report came home to check on the status of the data collection, etc... for therapy at school. I was told that they just had to finish up the process and get him on the MRT schedule. (They hold 2 of these meetings a month.)
  • We manage to get in for 4 therapy sessions at Wolfsons by December 31st before our insurance changed. 
  • January 2: start trying to get Jacob's therapy approved under our new insurance plan. End up having to miss 2 weeks of therapy waiting.
  • January 12: Get a call from the guidance counselor letting me know that Jacob's paperwork had never been filed or something and the data collection process that takes MONTHS was NEVER STARTED. "Sorry, could we get you to sign a new consent form?" At least they had me date it "October 17", so that he could become a priority instead of being put at the bottom of the list. 
  • Ever since Christmas vacation ended, Jacob has been off the wall, unfocused at a new level, and exhibiting weird tendencies that (the therapist confirmed) are related to sensory processing issues. I ask her to start the evaluation process for sensory therapy. 
  • January 21: Decide to take the risk of therapy not being approved and still take him to his session. ($130 instead of a $30 copay for 30 minutes. I find out that he has been removed from the therapy schedule because of the insurance problems. All of our convenient 5 pm appointments were gone. For the next 9 weeks, we had to find random and totally inconvenient appointment times.
Today, January 23rd: Officially denied coverage for therapy from the insurance company. (Getting this information took 3 times longer than I was originally told it would take.) The bright spot is that we will probably be approved for a scholarship program where we only have to pay a copay (similar to insurance). I just need to fill out a single form and get the insurance company to fax me an official denial letter. "Sure, no problem. We'll have it faxed to you and the doctor today," said the seemingly helpful customer service representative. 5 pm= No fax. If I don't get my application in asap (like, tomorrow) I will lose all of the random appointments and be put on a waiting list. 

I also called the guidance counselor shall I put it mildly?... lit a fire under her "la-dee-da, the system is just slow and you can't fight it" butt to get his language therapy eligibility evaluated. NOW. 

If you actually took the time to read that, is your head spinning? Mine is. 

Like I said, I've been waiting to write an encouraging post about how well Jacob is doing and how much progress he has made with all of the therapies and interventions that I've been ensuring that he has. 

Still waiting...

Discouraged doesn't even scratch the surface of describing how I feel about how people and institutions are failing in every possible way to help me help my son. That is all I want. At the risk of sounding bitter, I've accepted that this is our road but I hate it. Someone call my travel agent because I want to select a new destination. I want to be on the road that gets us invited over for play dates with other Kindergarteners; where we could even think about looking into music lessons for the kid who already has a passion for it or joining Cub Scouts or soccer; the path that allows me to have a full conversation with my son without it ending in total frustration for one or both of us.

I know in the depths of my heart that it could be SO much worse and I am truly grateful that it isn't. But I can't help but look at Emily sometimes and think, "But it could be so much better." 

Guess how long I get to attend that pity party? About 10 seconds. Then I am invited right back to my life of trying to make the best of it and doing everything I can to pave the road ahead for Jacob. The past 5 months have been full of detours, dead ends, pot holes, and any other metaphor you can think of. The rest of the foreseeable journey actually looks worse than I ever thought we'd be on.

Please God, fill up my tank.