I haven't written a post since May. It is now 2 weeks before Christmas, and I am at a loss as to where to begin. So many things have changed.
I guess I will start with the most obvious- Her tics and OCD are worse than they have ever been. Her behavior and sleep patterns are very unstable. She jumps up and down at least a thousand times every day, counts everything from how many times she jerks to the lines on the floor. She has one drawer in her entire dresser that she wants her clothes to be kept in- ALL of her clothes (panties, blue jeans, skirts, and socks all crammed into one drawer). She has a series of cartwheels, jumps, and blowing out her cheeks that she repeats every so often.
There is a window of about 2 hours every evening when her morning dose of medication is wearing off and it is still too early for her night dose. This time is always the hardest. I try to have her home at this time because I am never sure how she is going to handle it. I made the mistake of taking her in the grocery store at that time of the day not too long ago and we barely got through the first section before I had to take her out. She couldn't stop counting the lines on the floor and she didn't want them to touch her. That is a very hard thing to avoid, however, when her main tic is jumping. The jumping would make her land on the lines, which made her freak out and start counting how many times they touched her. That sort of thing can happen in any store or mall where there are lines on the floor, depending on the time of day.
School became too much to handle. She was having nights when she wouldn't even close her eyes until close to 5 am, so school the next morning would be out of the question. If I got her to bed at a decent hour, and the next morning got her ready on time, one thing would set off a whirlwind of tics and panic over the thought of tic-ing in front of the kids in her class, and she would miss that day as well. I pulled her out and started homeschooling about 2 months ago.
I have no idea how her teacher ever got through the day with her.
She can't sit still, never remembers the things that she learns unless it is presented in an extremely repetitive manner, she screams and hiccups during tests because she gets nervous, and if she's had a restless night, she will literally fall asleep in the middle of a sentence when I am looking directly at her.
The school district finally diagnosed her with having a learning disability a few weeks ago. Since then, she has been attending 3 hours of special education a week and I am overwhelmed with the support and extra help that we both get in every subject. (If anyone ever considers homeschooling, K12 is definitely the way to go!)
She cries a lot out of frustration. She tells me all of the time that she hates Tourettes Syndrome and she wishes that someone could take her brain out and giver her a "slower one". That is the best way that she can describe what she goes through everyday- she can't slow down.
Allstars continues to be her sanctuary. The constant movement and the specific routine of practice keeps her occupied. She says she doesn't even think about TS when she is at the gym because there is always something for her to do with her body. I can't even describe how thankful I am that she has that.
She started seeing a new doctor. There was an issue with her previous doctor not returning our phone calls a few months ago, and because of her pretty serious issues at night we can not afford to have a doctor that isn't dependable. This doctor has helped her night issues some. Unless her tics during the day are extremely bad, the new medication that she has been put on helps her fall asleep at night. That has been a huge relief. Sleep is so valuable when you have a child that needs your constant attention.
We have started going to the nursing home on Tuesday mornings. She sings to the residents and visits with them for a few hours every week. The very first time that I took her, I knew that we would be regulars. She seems to be at ease around the people that live there. She can spend the entire few hours that we are there talking to each one of them, hugging them, and singing about the Lord. We are going in the morning to sing Christmas carols.
The holidays are going to be busy and full of excitement, so I am sure that will only exasperate things. But as long as she holds on to her smile, I will be able to do the same. I know that her Christmas will be fantastic. Her daddy and I will make sure of it.
She deserves more than I would ever be able to do for her. She deserves a day that isn't completely ruined by a brain she can not control.
