Church Newsletter

Back when Liam was first diagnosed with TS, I spoke to the CE director at out church and we talked about whether or not we should tell the other kids in the church school about his TS. At the time, I didn't feel like it was necessary- Liam's tics were pretty mild. In my mind, I was still trying to keep as much a sense of normalcy as I could, and trying not to make Liam feel needlessly stigmatized. Our outlook on telling other people has changed along with Liam's tics. Now I try to tell everyone that I can about Liam's TS- if they've been informed, and they remain intolerant, shame on them. If I don't take the opportunity to educate them and they're intolerant, shame on me. The ministers have given me the opportunity to write a piece for the church newsletter to explain TS. Oy- think they'd mind if I wrote the whole newsletter? I guess I can try to be brief. In addition, Liam's class and the older kids are going to watch "I Have Tourette's, But Tourette's Doesn't Have Me". It's a great start, and hopefully a jumping off point for discussion other than "what a horribly behaved child" at coffee hour.

Here goes:

Several of you were treated to a "cue" during pageant rehearsal. The cue was a high pitched squeal that sounds almost like a whistle- the young children were told that they were to smile at the audience when they heard it. Or you might have heard it during coffee hour and wondered why the parents of that child were letting him behave so badly and completely ignoring the noise and not reprimanding him.

Liam was diagnosed with Tourette Syndrome in March. The diagnosis was a relief for me- I could officially get Liam the accomadations that he needed in school. It was a relief for Liam- I showed him "That Darn Tic" a newsletter written by kids with Tourette's, for kids with Tourette's. He was so happy to know that he was not alone. Tourette Syndrome is a neurological disorder that causes a person to make repeated and uncontrolled (involuntary) movements and sounds (vocalizations) called tics.

Liam is not badly behaved, he's not trying to be annoying, he has a neurological disorder. Shortly after Liam was born, I was standing at the front of the church with our family, Liam's godparents, Rebecca, T. Michael and the all of the children gathered around the baptismal font. Many of you were probably in church that day, and I took great comfort in the fact that Liam had his church family surrounding him and promising to help raise him in the path that God has chosen for him. God chose a tough path for Liam.

We've been working on techniques to quiet Liam's tics on the bus to help make it easier for the bus driver to concentrate. When I asked her the other day if the gum chewing was helping, she told me that it was so much better and asked me if it helped at home. I told her that I wouldn't know- we don't expect Liam to try to hold in his tics at home, it's really uncomfortable for him and our home is Liam's sanctuary. Liam is free to tic without anyone batting an eye. My hope is that Central will be a sanctuary for Liam as well, that church is one place where he will be understood and accepted.

For more information on TS, please visit the TSA website- http://www.tsa-usa.org/ . I'd also like to invite you to read my blog http://beth-lifesatwitch.blogspot.com/ .

whack a mole

My kids all love the game whack a mole- you know when you go to Chuck E. Cheese or an arcade? There's this game- it's about waist high. You stand over it with a big foam mallet. You wait for the little moles to pop their heads up out of the holes and you try to hit them as they pop up. The more moles you hit, the more points you get. But the annoying part is that even after you've hit a mole, it still manages to pop it's little head up at you to make you feel like you haven't accomplished anything.
Sometimes that's my life with Liam.
The progress report came home from school. Liam's missing homework assignments. Reading logs. What kills me about that is that he's a voracious reader, but I think with the OCD component, he feels as though he CANNOT write his reading log until he's stopped reading for the night. (Usually he falls asleep with the book still open next to him). At the same time that I was reading the progress report, Aidan told me that he'd forgotten his homework once again. Sigh. Screaming, yelling, and gnashing of teeth ensued. When I calmed down, I think I finally got it across to Liam that he would read for half an hour, write his reading log, and then if he still wanted to read AFTER the rest of his homework was done, that was ok.
New mole popped up- Liam received a music progress report saying that he hadn't completed any of his music homework. (this along with the the overall progress report, and Aidan's announcement that he forgot to bring home his homework home led to my losing it). My first thought was "How difficult can music homework POSSIBLY be??? He's been taking piano lessons since he was 5, this is probably CAKE for him."  Then I reminded myself that his academic homework is tough enough for him to get through and if it's not on the homework board, he forgets about it. So do I call the principal and tell her that music education is important to us, he's taking trombone lessons after school and can we please put that towards his music grade at school? Or do I work with the music teacher and Liam to try to make up the work even though it's going to cause more stress but hopefully help him to learn to track his homework in all of his classes so that he's more prepared for middle school?
Speaking of middle school, another mole to worry about. In less than a year, we have a new school, a new administration, new teachers and new kids who had been in the same school as Liam when he was younger, but not while his tics were this severe. I'd like to start pushing sooner rather than later for those kids, teachers and administration to get educated on TS.
The bus. Happily, this mole is down for the moment. Liam is chewing gum on the bus. It seems to be working for him and the bus driver. There's a stew of reasons that the bus is difficult. As soon as kids start telling him to stop ticking anywhere, that location becomes stigmatized to him. It takes work to get it to not be a problem for him to be in that location without ticking. Also, he's been cooped up in school all day trying to control his tics. At some point, after holding them in all day, he needs to get them out. He also has issues with being in places surrounded by people. And while he has not verbalized this to me, I'm sure being in a location where he cannot excuse himself and go someplace to tic has got to be tough.
Our newest mole is church. We love our church and the CE director and ministers have been amazing with their response to Liam's increasing tics. I've emailed all of them and talked to some of them and their response has been loving and supportive. The CE director loves Liam and she has been so wonderful. She told the kids at pageant rehearsal that whenever Liam squealed, it was their cue to smile at the audience. It was FANTASTIC. We had a long talk on the phone, and she's so caring and calming. I got lovely emails from two of the ministers that were supportive and caring and they assured me that they'd work on an education piece at their staff meeting on Tuesday. My concern is not so much the children, it's the "control your child" looks at coffee hour, and the looks that Liam gets like he's misbehaving. Brian reminded me that I can't get upset at people who don't know, and rationally I know that, but as a mom, my primal instinct is to protect my baby.
The karate class mole- Liam's karate instructor is wonderful. His wife is fantastic and has been trying to help spread the word among the parents. The kids are getting used to his ticking in class. There's one poor kid who is in his class who has sensory issues and the noise for him is excruciating- more so than to the other kids. Tht one's tough, because I totally get it, and wish there were some way I could help to make it easier on him. The parents in the waiting room have been tough. I'm trying to get it out there, and I'm sure time will heal this one, but it's definitely trying.
I'm hoping Christmas break will be a nice break for me from playing whack a mole.

relating

I realize that lots of times I feel this rush of relief when someone "gets it". Liam had a playdate last night. In the past, I haven't felt the need to tell other parents about his diagnosis, because I don't feel that it defines who he is. But lately, with the severity of his tics increasing, I feel the need to let them know so that they react well if he tics when they're with him. So I said to the mother "by the way, not sure if your son mentioned but Liam has Tourette Syndrome". Her response was "Yes, he told me, I worked with someone for years who has Tourettes. He's not allergic to anything is he? because I'm taking the boys out to eat." Whooooosh, rush of relief.
I had a similar experience when I told a friend with a special needs child about his diagnosis. She sent me this poem that I'd love to share with those of you who have not had the pleasure of reading it. It made me love her as a friend just that much more. She gets it.

Welcome to Holland

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tourette Syndrome: A First Hand Look

I'd like to thank Liam for allowing me to repost an article that he wrote for his class newspaper.

I was first diagnosed with Tourette Syndrome when I was in 4th grade. It was at first a little surprising, and a little relieving. I finally knew why I did those inexplicable movements and sound.

Have you ever had your leg suddenly twitch when you're in bed? And I do it, about 50 times a day literally.

I have always ticked, but the first few times I ticked after being diagnosed, it felt creepy. Most people thought I was doing it on purpose, even I thought I was, but it was m brain doing this. At that time, I didn't understand Tourette Syndrome, like I do now.

But I was nervous that other people would treat me like I was someone who had gone crazy overnight.  But everyone was ok with it. Friends of mine said "I think you should be friends with someone who has Tourette Syndrome as much as someone who doesn't, because they're just like anyone else." Ah...how true. We are just like anybody else, and Tourette Syndrome is NOT contagious.

One last thing, I just want to point out. The reason I have Tourette's. My nuerons are restless. Think of it this way. The little messengers in my brain don't take the coffee break they're supposed to. Instead they do something else. They make me scream, or shrug, or jerk or make weird noises. So, if you see me in the halls and I'm shrugging my shoulders, or if you hear me screech in bus line, don't be alarmed. If you think you see me having a seizure don't call 911. It's probably just a tic.

This website will help you understand TS better. Go to http://www.tsa-usa.org/ . Kids, click on "that darn tic" because you will find everything else boring, trust me, I'm a kid, I know! Adults, you should just browse, that's what my mom does.

If anyone would like to comment, I'd be happy to share with Liam.

coughs, ticks, and The Wheels on the Bus turns into Days of Our Lives

Last night was a celebration to honor our outgoing Governor. My husband had RSVPed for us back before I had the plague (ok, it's not quite the plague, but it's a really nasty cough). I went to the doctor who basically told me "it's going arond- expect the cough to last 3-4 weeks, your lungs sound clear". So, while the cough is annoying, I opted to go to the event. We chatted and had some cocktails and then grabbed some food and sat for the speeches. Though I was well armed with cough drops and a few glasses of water, I still coughed (as quietly as possible) throughout the evening. While we listened to the speeches, I tried to stifle my cough and wait for the clapping to really let loose. At some point during the evening, I realized that what I was going through trying to hold back my cough and let go during the clapping when it wouldn't bother other people  is what Liam must go through all the time with his ticks. It was really hard to focus on what was being said while I was concentrating on trying not to cough. It was also hard to try to let out little gently coughs while the speeches were going on and not just really cough hard and get it out. With my chat with the bus driver still weighing on my mind, I thought again about how hard it must be for him to get through a day in his classroom, and then the long bus ride home.

Today, Liam's principal called. I really like her a lot, and while I must admit a call from your child's principal is daunting, it did not put me at all on the defensive because I know that she wants what is best for my son. She told me that the bus driver had submitted a report about Liam's ticks. She said that she would usually bring a child into her office to gently discuss their behavior when that happens, but because of Liam's diagnosis, she wanted to talk to me first. I told her that I was so happy that she'd called and before about a week ago, I had no idea that Liam was even ticking on the bus. I explained that I only found out when I heard him squealing as he got off the bus and saw the bus driver bristle and roll her eyes. I told the principal that at that point I asked the bus driver if Liam had explained that he has TS. I also let his principal know that the bus driver had told me that the younger kids were yelling at him to stop. I explained to her that I had offered to drive Liam to and from school, but that he hated the idea and loves the bus. I also explained that the other kids yelling at him actually escalates the ticks and that what I thought would be best was an education component for the younger kids on the bus (not to mention the bus driver).
Her response was so kind, and she said that she agreed and felt that it was important to not make Liam feel at all like he was being punished and that she would work on trying to figure out a way to make sure the other children understand. She also felt that if Liam enjoyed riding the bus, he should be allowed to continue with doing so.  I offered to come in and give a presentation if need be. We'll see where it goes, but I'm going into the situation with high hopes.

Tis the season...

One thing that I've learned about TS is just when you think everything is on an even keel, hold on tight and get ready for a storm. As any parent of a young child knows, nothing throws kids off quite as much as the holidays. Kids with TS are especially thrown by change in their routine. In our house, not only are we dealing with the just gone Thanksgiving, fast coming Christmas, but we also are dealing with the unexpected loss of my grandmother.

Yesterday I took Liam to karate and was amazed by how much Liam was squealing in class. We were down to a few times a day, but this was at least once or twice a minute through most of the class. I was very proud of him for telling the other kids during their stretching period about his TS. Not only did he tell them, but he gave them the address for the national TS Association website. Thankfully, the owner of the dojo has had other kids with TS, so he's dealt with it before in his class and Liam loves him. His wife was very sweet and I was so touched to see her want to run in and tell the other kids to not yell at him or tell him to stop.

Today, I happened to be outside to get the kids off of the bus. I heard him squeal very loudly and saw his bus driver tense. I said to her after he got off "Liam told you that he has Tourette's, right?" She told me that he had told the bus monitor. She said that she didn't know if she could take it, and that sometimes it startles her while she's driving. While I sympathize, I bristled at the comment. She said some of the other kids yell at him to stop it. She said that the older kids were good about telling the little ones that he can't help it and the less they yell at him, the better it will be.

I asked him later if he wanted me to drive him to and from school. He said that he'd prefer to take the bus. He likes spending time with his friends on the bus. As much as I want to protect him from others being cruel, I'm proud of him that he's willing to tough it out and try to make them realize that it's something that they need to adjust to, even if it's difficult and annoying for them. I'm trying very hard to practice patience and empathy for the other kids and the driver and the monitor, but sometimes it's tough.

parent teacher conference

My daughter's parent teacher conferences go something like this:
"Your daughter is wonderful, I can't say enough about how much I like having her in class, she's doing an excellent job, there's really nothing she can improve upon, what are you doing here?" I actually skipped her parent teacher conferences this year to go to Liam's monthly TSA meeting because I figured Liam and I needed our TSA meeting more than I needed to hear 7 teachers gush and ask me what I was doing there.

It should come as no shock that Liam's parent teacher conferences are not quite the same experience. Liam is empathetic, artistic, smart, and has TS. Which brings with it a whole set of behavioral problems. Kids with TS lots of times blurt out comments during class that are not pertinent to what's being discussed. They can't sit still. They move around a lot from the tics. They need to get up and move around the classroom or take a walk outside to get the tics out and refocus. They have lots of sensory issues that require different creative solutions. They make noise. They're inconsistent- some days the TS is practically non existent, and other days they can't stay focused, they're jumpy, and they're ticking like crazy. Many of them are incredibly impulsive. Most of them have dysgraphia (a hand writing disability that does not allow them to form letters well). Third grade was pretty much hell for Liam because of the dysgraphia. He had an old fashioned teacher who felt her mission in life was to make sure that every child coming out of her class have perfect penmanship. She was lovely, and a good teacher, but a stickler for neat, orderly and quiet. The end result of that for Liam was lots of work being sent home to recopy and lots of lost recess to redo work. I am to this day beating myself up emotionally that I allowed recess to be taken away and that I forced the poor kid to sit and redo page after page of trying to write neatly.

Liam's first quarter report card came home this year with "Liam is inconsistent and impulsive" written in the comment section. Then he came home with a time test (a time test?! For a kid with TS?!) that had a big red "parent signature needed" stamped across it. My heart sank. My stomach did flip flops. Did his wonderful teacher who I had such high hopes for totally not get it? Yesterday I spent time prepping. I gathered together the report card, the 504 plan, and 6 pages of information from the TSA website for educators, highlighted with info that I thought particularly pertained to Liam. I had a little mantra going in my head. "be patient, be understanding, be kind, know that she has lots of other kids with their own needs in her class and Liam cannot be her first priority all the time". I took a deep breath before I went in. I spent over 45 minutes with Liam's teacher. We had a wonderful conversation about how things were going with him, and the progress she had made with him, and we talked about some of the work she had dome to try to figure out what was associated with the TS and what was not. We had a discussion about how during the beginning of the year he would be rude to her, the aides, other kids- and how much it had improved. We discussed his medication and how it was going. We discussed some of the other things that TS can come with that Liam doesn't have. We talked about his TSA meetings and the article that he was writing for the class newspaper about having TS. We talked about the talent show and his magic act, and his group social studies project that he worked on first quarter. We talked about reading comprehension and how it's graded. We went over the 504 plan together to see if it needed any updating, and her fears for him heading into middle school.
It was a wonderful meeting, and put all of my fears to rest.