(Playing an inflatable game at his first OU tailgate)
365 days of struggles, tears, smiles, change, prayers, hope, determination and love.
So much has happened over the last year. I haven't blogged much about his TS, more about the changes I'm making in our lives to ensure he has the best life possible. TS may exist in Hayden's life, but I won't let it define him.
The doctor's said his tics would change, and come and go, and they were correct. His repetitive blinking seems to be gone, and I thought maybe he wouldn't have any motor tics for a while, but now he's started licking his lips all the time. I try to keep things as light as possible, so we just jokingly say his "clown lips" are back (he gets very chapped around his mouth from the licking) and double up on the chap stick and Vaseline. Nothing we can't handle! The head moving/nod is gone - which is awesome! He still clears his throat a lot and hums. But, I'm very thankful none of his tics are anything that most people even think twice about. It could be so much worse...which has been my mantra for the last 365 days.
The day the humming tic started, we were in the car. I heard him hum, but I didn't think too much about it. New tics don't really surprise me; all my research told me to expect this. And so, I was fine, until I heard him do it again, and he caught my eye in the rear view mirror and he started to hum along with the song on the radio in an effort to cover it up. It broke my heart. I fought back the tears and told him a new tic is nothing to stress about, especially not around me. He started crying and asked me why God would do this to him. Hardest question I've ever had to answer.
It can be easy to tell people "There's a bigger plan", "God will work it out" or "All things work out for His glory". But, looking into the tear filled eyes of your child, who is daily fighting a battle with a neurological disorder that effects his self confidence and self worth, is a totally different ball game. A 7 year old who is just starting to learn about his faith and God, isn't quite ready to comprehend why bad things happen to good people.
So, I explained it as best I could while we sat at the red light. I told him that God has a plan for his life, and I knew it was going to be an awesome plan. That, sometimes, things that seem really hard or bad at the time, will end up getting better and other people will see how it turns out and it will help them. I told him that most people don't know anything about TS but he could be the person who changes that and helps other kids who will struggle with TS in the future. I also reminded him that all of these things are "big jobs" and God only gives these kind of jobs to people who are tough and can handle them, so God must think he's a pretty awesome little guy.
Then, we turned the radio up and sang/hummed as loud as we could.
The move was rough on Hayden; change always is. He's seeing a counselor to help him work through what may be some mild OCD. A very high percentage of TS cases also have a co-morbid condition; OCD, ADHD, ADD, impulse control, etc. Hayden has impulse control issues, especially during times of change. He requires a very routine life/schedule. When things are very consistent, so is his behavior, and vice-versa. We're working on some coping skills and anger management. Seems to be helping.
We've settled into the house, and we're nearly 2 months into school. Lakeview has been amazing. Everything I hoped we'd find when we changed schools. His teacher is a retired drill sergeant, so she has no problem keeping him on a daily schedule and routine.
Things are starting to settle down, so I hope to get back to posting more. I've missed taking time to journal the changes I'm making!
