Tuesday, August 08, 2006

A new dimension of TS

Last Thursday, a new tic surfaced (the "squeal") with Mac. It was the loudest and most visible tic she has ever had. However, when you're going to a waterpark, you're surrounded by squealing girls in bathing suits. It wasn't too big of a deal ... until we got home ... and were in the store or church.

One of the things about Tourette Syndrome is that you never, ever know how it will play out in each child. Up until this point, Mac's has been pretty mild, considering the other kids we know with TS. Another thing you learn is that sometimes things can trigger a progression of the tics. They may go through terrible stress unscathed, and yet one incident may push their disorder over the edge. Well, that is what seems to be going on with my girl, right now. Her TS has pushed her over an edge into a new and very challenging existence. She's not quite ready to talk about it yet, but gave me permission to catch you up.

Her life is stressful:

My husband has been called to pastor a church. That's all we know. Where will we be moving? When will we be moving? We don't have any answers yet ... so we're all just waiting.

Our foster son has been with us for eight months, and will be leaving us in about two weeks. If you've ever had a preschooler, you know that they like to express every emotion (in this case, grief) in whining, fighting, crying, regression (take your pick, the list goes on). So, throw in my three-year-old, and you can only imagine the temperament in our home right now.

Some dear friends were adopting a six week old baby. They had already been having transitional visits with him. We were to all be at his entrustment ceremony yesterday. Unfortunately, we got the call Saturday night. He had died in his sleep. Tomorrow morning we'll be with his family to bury him.

Sunday morning the kids found a lizard under my son's bed. Mac was sooooooooo excited (so excited that she forgot to be nervous about going to church! Yea!). However, by the time she finally trapped "Baby Liz" in a jar, some damage had been done. He was still breathing, so she was determined to come home and nurse him back to health. Sadly, when we arrived home, he was dead. It absolutely crushed her. She wept most of the afternoon. We buried him in the backyard.

Stress, stress, stress, stress, STREEEESSSSS!

Sunday night during church, Mac politely whispered to me that she needed to squeal. I suggested she go to the bathroom to get it out. She did. Crisis averted.

We came home and had some company. She kept running to her room, and each time I would hear quite a ruckus. When I walked in, she was beet red and very disheveled. She told me that she just needed to yell, and bang her body around. She was crying. It was really upsetting her. Sure enough, I witnessed it a few times (reminding her that it was okay, and she is safe to tic at home however she needs to). It almost looked like a convulsion.

Now, as a side note, my Mac is the most kind hearted girl on the planet. She has never hit, name called, or deliberately hurt a child physically or emotionally. That's just her. She oozes compassion. Keep that in mind as you read the rest.

This continued into yesterday. At one point she was growling and jumping up onto the coffee table. She admitted later that her body wanted her to say a bad word (fortunately, her bad word is "stupid"). Again, I reminded her that she could tic away at home, and it was okay. Once she felt the freedom to do so, we could really see how hugely everything had progressed. The day was full of throwing things, banging things, giving her an empty cup to knock over when her body was telling her to knock over her brother's chocolate milk. She had the urge to hit and shake siblings. We all tried to stay alert and give her outlets for these urges.

We would stop her, suggest an alternative outlet, and then you could just see it in her eyes, "I was about to hit my sister!" She would run into her room in tears.

Welcome to our weekend! We already have an appointment with the neurologist next week. Right now we're increasing her meds a little that cause drowsiness. It will help her sleep more and hopefully keep her somewhat sedated. Today is a little better, but the new stuff is all still there. Next week will be a big, giant evaluation time with Dr. Sperry.

The good news? This morning I found Baby Liz's big brother (I'm guessing - as this one was about a whole inch and a half long! ha!). Michael and I were crawling around in the corner of my vanity trying to catch the thing. We knew it would just make Mac's day. Sure enough! We'll be at the pet store later, stocking up on lizard supplies!

It seems that all of our blogging has really been helpful for people. That's exactly why we do it. Not only do we want our own circle of friends to have more understanding, but we want everyone to learn. You may have someone in your life that has TS, OCD, ADHD, depression/anxiety, bi-polar disorder, etc.. However, they've always been labeled as "weird" or "mean" or (fill in your label here).

There is something behind every behavior. Don't run from it or avoid it. Walk right into it, make a new friend, ask questions and enjoy all that person has to offer the world.


Anonymous said...

I am so sorry for your friend's loss, how very sad.

Mac's struggles must be so hard. I read her blog the other day and she is such a cool little girl! (big girl?!?! hehe!)

Oliver Saks writes about neurological disorders and the people that live with them. His books can be very inspiring in the sense that I believe on Brain Surgeon he wrote about had TS and would be perfectly calm during surgery then experience ticks afterwards. There are no limits what Mac can do!

Anonymous said...

You have NO IDEA how badly I needed to hear that last paragraph today. THANK YOU!!! My son's issues are completely different, but still. It was just really something I needed to be reminded of.

I'm sorry Mac has to struggle this way. It's heartbreaking. But, she is soooo lucky she got you for a mom!!! And of course, after reading her blog, I'd say you got lucky too!!

My prayers are for your family tonight.

Anonymous in NYC

Amy T. S. said...



Anne said...

Christine & Mac!!! Oh so sorry that you're having a rough time. Glad you have a safe place to retreat to. Praying for your hearts and for the stress levels to be alleviated.

Harmonia said...

Sorry to hear about all the stress! You are all in my thoughts and prayers.

Beth said...

Found your blog tonight thanks to the recommendation of a friend who heard you speak somewhere..what a gift! I'm glad you're here and I'm looking forward to catching up on your life...

Be blessed and enjoy your time away...