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.

I've never seen anything, how did you know?

Since we "came out" about Liam's TS, one of the most common things I hear from friends and family are things along the lines of "I've never seen anything, how did you know?". I'm always a little bit astounded as I've seen several tics a day (even on his best days) since he was in Kindergarten or first grade. Part of it is, of course, that I'm more tuned in to my kid than other people would be, so unless it's a really blatant tic, other people don't notice- unless they're aware of tic disorders and TS. I will never forget one of the first people that I told that we were going through the diagnosis process saying to me "oh, really? You don't have a diagnosis, I assumed you did". Her son has OCD and a tic disorder. I kind of liken it to buying a new car. You don't notice them on the road at all, then you buy one, and suddenly they're everywhere.

I'm still always a little bit surprised when close family and friends are taken by surprise by Liam's tics. I tell them what it's like, but like with anything else, I guess you can't really know until you live it. On Thanksgiving, the kids were all in the living room with my stepdad and my best friend's daughter playing cards. Me and my mom and my best friend were sitting at the dining room table still enjoying our dessert and tea. Liam had his squealing tic. Then it came again. My friend said "what the hell was that?". She thought my youngest was screaming. I told her and my mom "Oh, that's Liam's tic". They both looked so surprised, because I don't think they'd ever seen Liam have a bad tic before. My mom was getting ready to take Liam to her house for a few days, and suddenly, I think, the severity of Liam's TS made her nervous for the first time. I don't really worry anymore about what people will think when we're in public. Liam and I are both pretty good at explaining TS in a very concise way. My mom started asking if it would be ok to take him to this place or that. I told her he was very able to explain to people what TS is, and he'd done it several times. I told him as they were leaving that grandma would like to bring him to these places and if he had a tic and thought that it made people uncomfortable, he could explain to them that he had TS.
I guess like every mom with a kid with TS this age, I hope that he's one of the ones who essentially grows out of it. But if he's going to have to live with it, my hope is that he remains comfortable and confident enough in his own skin to be open with the people he loves about what he's going through and doesn't try to hold back in front of them.

My TS Thanks Giving

Thanksgiving, much like New Year's, is a time for reflecting and seeing how things have changed over the last year. Last year at this time, we were still 4 months away from getting Liam his diagnosis. We've had a lot of changes.
This year I'm giving thanks for:

A diagnosis. It was tough prior to having a "name" for what we were going through.

The National TSA. As soon as we got our diagnosis, I spent a great deal of time watching videos and reading articles on the TSA website. Liam had felt so alone and was so happy to find kids his age, with similar interests, who also have TS. He was a different kid after I showed him "That Darn Tic" the TSA's newsletter for kids, by kids.

SELAC (Special Education Local Advisory Committee) One of the first people that I called when Liam was diagnosed was the President of our school district's SELAC. She was able to put me in touch with another TS mom whose son had gone through the system. It was great to get the perspective from someone who had been through what we were going through.

My mom friends whose kids have special needs. I can't even begin to describe the empathy that moms who have special needs kids feel for each other. It's like you're in a private club that others just can't begin to understand. They "get it" in a way that others cannot. Some of the most amazing support through this has come from friends whose kids are on the autism spectrum or have severe anxiety or OCD. It requires a shift in thinking that I don't think other parents can ever understand completely.
And as a subgroup to that- my TS mommies. I've met some amazing moms of other kids with TS. Some of them I've only met online, and some of them I've been lucky enough to get to spend time in person with. I'm incredibly thankful for them.

My adult friends with TS, It's great hearing from an adult perspective what it was like as a kid. And just having grown ups in our lives who have been there is such a source of strength.

Our local TSA- This is probably the thing that Liam gets more excited for than anything else all month. It makes him so happy to be with other kids who he doesn't have to feel self conscious around. Both the other kids with TS and the siblings. It's a great environment.

A good school system- while I have sometimes had frustrations, I've heard horror stories from other folks who couldn't get IEPs or 504 plans. We're very lucky.

Good friends and family.

this could be me

The National Tourette Syndrome Association posted this on their facebook page. It reminds me so much of me and Liam and our outlook and things that we deal with. It's a great little 3 minute slice of what it's like to have a child with a not terribly severe case of TS. I think most of the documentary type of things I've seen about TS tend to be about more severe cases.

http://www.parentsask.com/herstory/raising-son-tourettes

Fate?

I've had several friends mention that I haven't updated my blog lately- very accurate! There are several reasons- our whole family has been consumed with politics. For those of you who don't know, Liam's dad is a State Representative and we just went through his first (hopefully of many) reelection campaign. So the whole family has been busy with campaign activities all fall. Liam spent a lot of time on his scooter and skateboard out knocking on doors with his dad. The second reason is that as far as Liam's TS goes, we've pretty much been in a holding pattern. He's doing well on his meds, school is going ok, he's been busy with activities- so there hasn't been much to write about.  I'm excited to say that I have something to write about!

Back in April after Liam got diagnosed I decided to find him a therapist to work with. I found a therapist who we LOVE who works with kids and does a lot of art and play therapy- which is perfect for Liam. They built up a really nice relationship. Then a little over a month ago a friend who reads my blog asked me if I'd give a friend of hers a call. Her friend had just recently gotten her daughter's TS diagnosis. We had a great talk and she mentioned that her daughter had gotten into a program where they were working with TS kids and doing habit reversal training, and best of all, they take insurance!

My big fear was figuring out how to take a break from Liam's current therapist to get him into this program. One of Liam's largest anxieties is change. I was afraid to rip him away from this relationship he'd built to try something new. Thankfully, the timing was perfect. The next time we went to his therapist's office, she asked if she could talk to me alone before we brought Liam in. She let me know that she was leaving the group she was with to go out on her own and that she was having a problem with our particular insurance company and it might be a little while before she could clear it up. I let her know about my conversation with the other mom and she was so happy that we'd found something. We were able to talk to Liam about it together and let him know that we thought it would be good for him to try this new type of therapy.

I spoke to the new doctor the other day. We're going to set up an intake interview within the next couple of weeks. Liam will be working on identifying when he's going to have a tic and work on generating a competing response so that the tics will be less severe. I have a lot of hope that this will help Liam with not only his tics, but the other problems that go along with TS.

Orthodontia and Substitutes

One of the bains of Liam's existence is substitute teachers. This is totally predictable, and I'm sure it's true for a lot of kids with TS. All of the angst we went through prior to Liam's diagnosis with teachers telling us he "wasn't behaving" are back again on days when there's been a substitute. And while in an ideal world we could educate all of the substitutes about TS, it just isn't as easily done as that. Teachers who have Liam all the time and other people who are around him all the time (including his family) have a hard enough time really understanding it, but to try to get a teacher who is not there all the time to understand why he's fidgeting, making a noise or talking out of turn is close to impossible. While Liam hasn't come home complaining about substitutes lately, I was reminded of this at the orthodontists office today. Liam had a tic where he was chewing on his fingers until they were bleeding. So I bought him a necklace, "chewlery", so that instead of putting his fingers in his mouth, he could chew on this necklace. Well, today his orthodontist (though I've explained to him several times that Liam has TS) insisted that it would be better if he not chew on his necklace. I cheerfully told him yet again that the option was the necklace or his fingers until he bled. At which point Liam showed him the scarring on his fingers to prove my point. I continue to be frustrated by people who seem to think that behaviors and tics associated with TS  are "bad behavior" or "bad habits". The orthodontist is putting a cage in to stop his finger sucking (a bedtime habit that we've been unable to break), but told me that he'd need to stop chewing on his necklace too (definitely not a habit, but TS related as it's come on over the last 6 months). It frustrates me that teachers and people in the medical field aren't better educated.

I'm sorry

There's an interesting divide among the TS community about apologizing. Some people will not apologize for their own or their kids ticcing. Some will. My feeling on it is a middle ground. I feel as though Liam having a tic in public around a lot of people is unfortunate for him, because it's never comfortable for him to have attention drawn to himself like that, but that it's almost always an opportunity to educate.
I've tried to teach Liam that when it happens he should simply give an "elevator speech" about TS. An elevator speech is a concise planned out speech that you could give in the time it takes to ride an elevator. I've practiced the main points that he wants to get across with him. He likes to let people know that it's not contagious and he can't help it. I like it if he gets a few more details in there because I feel like education is such a huge part of conquering this for the entire community. The more people can identify it, not be scared of it, and know someone with it, the more overall tolerance and understanding there will be.
One of the other great things about doing this as opposed to apologizing or just pretending it didn't happen and letting people wonder what's going on is that Liam is gaining a tremendous skill. He's learning to talk to people with confidence on a subject that he has greater knowledge of than most adults. It's a great way to empower him.
Before Liam was on his medication, he was having horrible tics walking through the grocery store one day. His younger brother was being BRUTAL to him. Whining and yelling at him to stop making that noise. Ever since, grocery stores have been a huge trigger for Liam. Whenever we walk in I can tell he's getting tense and about to start ticcing and he worries about what people will say. As soon as I tell him "go aheadn and tic, and if we have to explain it to people we will" he calms down and the urge to tic subsides.

TSA happiness

When I first tell people about Liam's TS, the typical reaction is "Oh my goodness, I'm so sorry, how did you know!?" or "Really? I've never noticed anything"
The funny thing is, I have known for years, but was putting off a diagnosis because I wasn't ready for it. When Liam's tics first started I was alarmed and brought him to the pediatrician who told us that many kids have tics and grow out of them and I shouldn't worry. I went with that FOR YEARS. Until it became an issue in school. 

Once we got the diagnosis, one of our biggest comforts has been the Tourette Syndrome Association. One of Liam's first comments after we got the diagnosis was something to the effect of "why am I the only one who has this". I had him sit down at the computer and read That Darn Tic, which is a newsletter written by kids with TS for kids with TS. I was able to show him pictures of other kids with TS who were his age, had similar interests, and were talking about their TS. It was amazing watching his attitude change when he realized he wasn't alone.

We were also able to start going to support group meetings. Liam and I walked into our first TS meeting with hesitation, not sure what to expect. We were greeted with a sweet smile by AnnMarie, a mom whose teenage daughter has TS.  She asked if we were there for the support group. She showed us where the kids were meeting and I sat with Liam while he got comfortable with the other kids. Once I got him settled in, I headed over to the parents' meeting.

It's been 7 months since our first TSA meeting- we went to the October meeting the other night. Liam was so excited he was bouncing up and down when I told him it was time to head out for the meeting. He had a great time, as did his little brother. As for me, as heart wrenching as it is talking about what our kids are going through with this, and what we're going through trying to parent kids with TS, it's the most wonderful feeling to have a group of people who just totally "get it". Sometimes there's answers and exchange of ideas. Sometimes there's just talking, listening, and understanding. Either way, this is where I know me and Liam can feel totally comfortable.

med blues

Ugh, just ugh.

Saturday night Liam slept over a friends house, and busy as we were, we totally forgot about his meds. He did too. Yesterday was a bad tic day, but today is our blyuck day. Liam feels just horrible- stomach ache, achey all over, exhausted, diarrhea. He's missed his meds three times now since we started, all with the same results. I posted on the National Tourette Syndrome board and asked if anyone had had experience with this. Someone answered that they had the same experience and that clonodine is a blood pressure medication as well so it really screws with the system when missed.

Thank goodness tomorrow will be back to normal.

It's Not Just the Tics

There's a great pamphlet that I had attached to Liam's 504 Plan called "It's Not Just the Tics". It talks about ways that teacher's should deal with TS in the classroom. One of the biggest issues with TS is that it's always comorbid with a wide variety of other disorders. Liam's diagnosis was strongest in TS and ADHD, but his neurologist says OCD is probably stronger than ADHD. Regardless, I'm always wondering what is related to the TS and what's not. Today the things that were clearly attention/focus issues seem myriad. This morning I asked him to remember that he was being picked up 15 minutes early and he should remember to write down his homework earlier in the day so that he didn't forget anything.

We got to his orthodontist appointment and I said "did you remember to write down your homework?"
The answer was "um, well, I remember what I have to do". After his orthodontist appointment, we drove back to his school and I asked him to take out his planner and we could go write down his assignments. He informed me at that point that he'd forgotten his planner. We went inside and his teacher mentioned that she had also reminded him to go over his list early since I was picking him up early. She asked him if he remembered his social study book, which he needed to do his homework. The answer was of course no.

One of the other frustrating things about tics seems to be that the more the person feels the pressure not to tic, the worse the compulsion to tic seems to be. I always wonder if this actually the TS or the OCD. We went to the grocery store after we went back to Liam's school and I noticed that he was ticking more than usual. Probably because he was upset about school. But he was trying to keep his screaming relatively soft. He told me "Mom, I don't want to be screaming through the supermarket". I told him not to worry about it, that he could scream all he wanted and I wouldn't care at all. He squealed a couple more times, which I completely ignored, and then it stopped.

There are so many kids with TS who have ODD, and depression and anxiety attached to their diagnosis and I sometimes wonder if any of those things were things that got missed or misdiagnosed and am I waiting for one of these things to surface more severely around the corner.

tic whys

When I was in college, I began to get horrible stabbing pains in my abdomen and was diagnosed (after some very unpleasant testing) with ulcerative colitis. All through college and when Brian was in law school I would go through horrible bouts where I wouldn't be able to eat for weeks on end due to the pain. I'm assuming that the reason that this generally doesn't bother me anymore is that I'm far more careful to get lots of sleep, excercise regularly, and eat a healthy diet than I was in college and when I was working waitressing the breakfast shift and staying out late at night  for drinks with coworkers after my job doing telephone fundraising while Brian was in law school.
I remember during that time having lots of bouts of colitis. When this would happen, Brian would cross examine me and ask if I'd been getting enough sleep, if I'd been eating anything unusual, a whole list of other factors and  mutter about the change in weather (as drastic temperature shifts seemed to bring on symptoms). It would, quite frankly, annoy the hell out of me. Whatever brought it on, it was happening to me at that point in time and I just needed to rest, not eat much, and drink lots of fluids until I felt better.
Thinking back to that, I woulder why I tend to do the same thing mentally with Liam's tics. He's been relatively tic free for the past week or so, he always has them, but they've been pretty minimal. Tonight I was walking through the grocery store with him watching him have tons of motor tics and going through a mental checklist of reasons for tics to get more severe. Not enough sleep? Change in schedule? Too much stimulation? Trying to hold the tics in in front of others for too long? It makes me wonder why I'm doing this to myself. I know life doesn't always go as planned, and as much as I would love to put Liam in a bubble to make sure that his tics are minimal, I can't. I wonder if the mental checklist will always be there or if I'll ever accept that there are some things we just can't control.

NECAPs (pronounced kneecaps)

NECAPs are the New England something something assessment somethings something-
They're the standardized tests for kids in New England to see where we stack up. They're administered from 3rd-8th grade.
I have to admit to cringing whenever I receive mail from the school. I assume the worst. We get practically everything general home in the backpack, and if it is something of the more urgent variety, we get a robocall from the school. So a letter home means something specific to one of my kids.
So when I saw the "to the parents of: " letter in the mail the other day I was a bit on edge.
I've been reading the horror stories of other parents on the TSA facebook page, about IEPs not being followed and lack of notice of 504 plan meetings.
I have to say that we've been blessed with a wonderful, amazing, communicative school district and teacher.

So, the letter.

I opened and found that during NECAP testing Liam would be provided with extended time, small group seating, and frequent breaks to walk or rock in the rocking chair.

*huge sigh of relief*

Followed by email communication from Liam's teacher to let me know that he would be  taking the test in a different room with her co-teacher to provide him with fewer distractions and better ease of letting her know when he needed breaks.
I wish other moms were able to point to my son's school and say "this is how you do it right".

The siblings

I started this blog to vent, educate, and just generally talk about my feelings where it concerns Liam and his TS. So, it stands to reason, the siblings don't get talked about quite as much in this blog as Liam does.
Diane seems to be dealing with Liam and his TS just about as well as can be expected- she pretty much ignores the whole thing And loathe as she is to admit it- she does kind of like her brother. They get along fairly well (well, as well as can be expected for a 13 year old girl and a 10 year old boy).
Aidan alternates between adoring and emulating his older brother and hating him. Which I guess is fairly normal as well.
Liam seems to have a tic that involves "laughing". The laughing is not really a laugh but a Muttley noise (If you are not familiar you can go watch at this youtube link ) This drives his brother nuts, and we've tried to ask Liam not to look at his brother while he's doing it. It most often seems to take place WHILE I am driving. You think texting while driving is a distraction? Try dealing with this.
Aidan doesn't understand Liam's tics at all- and as much as I try to explain to him that Liam can't help it, he can't seem to understand. One of Liam's tics at the moment is a loud squealing noise. Aidan seems to think this is very fun and when Liam squeals at home, Aidan likes to do it too. Which makes Liam do it more. *sigh*
Another one of Liam's tics (which seems to have subsided somewhat) is repeating phrases and turning them into a song. Aidan likes to join in, and sometimes this is absolutely hysterical and lots of fun, and I join in as well. You can see how this can all turn into the bain of a 13 year old girl's existance. One of my favorite hobbies at the moment is embarrassing Diane. Since that happens to be her brothers' favorite hobby as well, this tic is truly a joyous thing for Liam, Aidan and I. And while Diane gnashes her teeth and acts like we're torturing her, I think she secretly thinks it's kind of fun.

"Id rather people ask"

It's funny, before I had a child with a "disability", (though I tend to think of Liam's TS as just something that we need to deal with, not a disability) I would hear people with disabilities say that they'd rather have people  ask and that they love that little kids ask them about it.
Two things have become really clear to me:
1) I wish people would just ask
2) I wish many kids who ask would do so more politely. There's a difference between an inquisitive "did you make that noise?" and a roll of the eyes and "can't you stop making that noise?" But, beggars can't be choosers and I'd rather they ask rudely and get an answer that may teach them something than not ask at all.

The current diagnostic criteria for Tourette's Syndrome, as defined by the Diagnostic and Statistical Manual of Mental Disorders IV are as follows:

1. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.
   
2. The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.
   
3. The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.
   
4. The onset is before age 18.
   
5. The disturbance is not due to the direct physiological effects of a substance (e.g. stimulants) or a general medical condition (e.g. Huntington's disease or postviral encephalitis).

Liam's been having tics since preschool. The first one we noticed was eyeblinking. Followed by:
* throwing his head backwards
*several vocal tics, the first being "that horse noise"
*chewing on clothing to the point that he went through zippers on winter coats and chewed off buttons and through necklines of shirts. (I've been told by our neurologist when he asked for the laundry list of tics this is more of an OCD and or anxiety issue, but they're all inter related)
*pulling on his lower lip to the point that there were bruises across the skin underneath his lip
*echolalia (neurologist also thinks this is more of an OCD behavior than a tic- but Liam would repeat short phrases that he's hear and turn it into a song and have to sing it a certain number of times)
*punching his own knee to the point of bruising
*kicking- not at anything, his leg would suddenly just thrust. This would occassionally cause him to fall or have to sit down.

The tics that we're dealing with right now are a high pitched squeal (which sounds a bit like a whistle). This is really irritating to his throat. One where he pushes in his lower abdomen with his hands and then runs his hands quickly up his torso. And my personal least favorite at the moment, though all of them are painful to him to some degree, a biting tic. He bites his finger to the point where it is calloused and sometimes bleeds. We're working on redirecting this tic into a chewing toy at home and other things at school. Gum sometimes is really helpful with this one as well.  I've bought him a piece of "chewelry" and am counting the minutes until it gets here because I think it will give him a great deal of relief for this particular tic.
Tics can occur a few times or last for months or years. There's no rhyme or reason that I can figure out to them- though some moms of TS kids say they notice a cycle. Tics can be more forceful and more prevalent for lots of reasons- stress, exhaustion, excitement or when Liam's been holding them in for too long. And they calm down or disappear during certain times too- when he's reading, playing music or playing video games.

the medical dilemmas

We went for a meeting with Liam's teacher yesterday to discuss what he needs to be doing to make sure that he's working up to the best of his ability. Homework for Liam takes hours to complete. It is not an easy sitting down and getting it done. I remember fifth grade homework for Diane usually taking about 15 minutes. With Liam, the same amount takes several hours.
One of the suggestions that his teacher gave us is to get him CBT or Cognitive Behavioral Therapy.  From the website of the National Association of Cognitive Behavior Therapy:

      Cognitive-behavioral therapy is based on the idea that our thoughts
    cause our feelings and behaviors, not external things, like people, situations,
    and events.  The benefit of this fact is that we can change the way we think to
    feel / act better even if the situation does not change.

There is also a therapy for Tourette Syndrome called CBiT or Comprehensive Behavioral Intervention for Tics that is supposed to be very effective in reducing tics in some TS patients. From the TSA USA website:

Comprehensive Behavioral Intervention for Tics (CBIT) is a new evidence-based non-pharmacological treatment option for tic management developed by members of the Tourette Syndrome Association (TSA) Behavioral Sciences Consortium.
CBIT procedures combine elements of habit reversal training with psycho education and function-based behavioral interventions to teach patients effective tic management skills.

Great! So there's all these treatment options to help my child with dealing with his tics with a cognitive behavioral approach, right? Not so much. When we first went to see Dr. Brown (our neurologist) and brought up CBiT with him, he said that he didn't think that there was anyone working with it nearby who he could recommend. It was very labor intensive and unless done very well, not very effective. And that many people who had had success with it went on to larger cities to work with larger populations and more prestigious programs. I placed a call to the Yale Child Study Center at Yale New Haven Hospital in Connecticut where they do CBiT. I asked the woman who answered if they accept my insurance. I was told that they do not take insurance, the fees are all paid out of pocket and then you can submit to your insurance company to see if they will pay the insured back for any of the out of pocket expense. The program there appears to be once a week for 6 (sometimes shorter) to 8 months.
I also placed a call to the OCD Study at Bradley Hospital in Rhode Island. I know that they do CBT therapy and was told by a friend whose son was exhibiting tics related to his OCD that the treatment that he received there helped his tics completely diminish. I explained to the woman that Liam's primary diagnosis was TS comorbid with ADHD and to a lower level OCD and Anxiety and asked if they do CBT therapy with TS kids. She said that she was not aware of this, but would speak to a therapist and get back to me.
I then went to my very best source, the wonderful President of our local TS chapter who is looking into it for me with the Dr. that we work with at the local TSA chapter and also through his notes from the national TSA conference.

I find it sad that it's so easy to just keep prescribing these kids different meds when there are non-pharmaceutical therapies out there that are proven to work, yet it's so hard to get them. The recent Discovery Health Network documentary on TS alluded to this as well showing a surgery that greatly diminished one child's tics with great out of pocket expense to the family. Looking forward to a hopeful answer from our local TSA.

Fifth Grade blues

I've been emailing a lot with Liam's 5th grade teacher. I'm feeling very down at the moment about Liam and school. I was a horrible student, hated school, was the "isn't living up to her potential" poster child. So, I totally get Liam and his lackadasical attitude. He's artistic and a dreamer and it just doesn't matter to him. Add to that the TS and school is pretty much his lowest priority. So as a mom, I'm going nuts and pulling my hair out and trying to yell, cajole, punish, reward, anything that will get him to do what he's supposed to be doing because he's my baby and I want the best for him. As a person, I totally get where he is right now and can relate absolutely. Part of me thinks that it would be easier to pull him from "normal" school and homeschool him. But I don't think that would be the best thing for him- he's a social being and loves being around other kids. I also think being forced to learn how to organize and get his work done on his own and fit into the "normal" world is important for him. Then I sometimes wonder, how much of his energy at school is being spent on trying to hold in his tics?
The upshot of all of this is that we're going in to talk to his teacher this afternoon to try to get him on track academically. Fingers crossed that we will come up with some solutions to make our lives not a constant battle at homework time.

TSARI awareness day

Today the kids and I headed to the Providence Children's Museum for the TS Awareness Day. We got there early so we enjoyed the museum and then settled down to some new faces and some familiar faces. It was great to see some old friends, though we didn't really have too much of a chance to chat since we had to leave early, but still nice. We also met some new people, which was fantastic.
Once the program started we were treated to a wonderful presentation by Matt Giordano, who started out by having 4 members of the audience hold what I can best describe as drum heads with a rim around them that you hold. He performed an amazing piece for us, and then gave a great motivational presentation. He spoke a little bit about his own life and what he did to develop his drumming talent, and also about growing up with TS. He talked a lot about attitude and thinking of TS as a gift. He also did a really great simulation of what it's like to have TS- he had us count as quickly as we could by 2s for 30 seconds in our heads. I got to 108. He then told us that we were going to do it again, but this time we were going to have a "tic". Everytime that he beat the drum  during the 30 seconds, we had to touch our knees, then our elbows, then our shoulders. Then he told us that we were going to have an OCD symptom as well so that every time we got to a number divisible by 10, we had to go back 2. So instead of 2,4,6,8, 10, 12, 14, 16, 18, 20 it would be 2,4,6,8,10,8,6,810,12,14, 16,18,20,18,16,18,20,22
The second time I got to 26. No wonder kids with TS have a hard time focusing!
After that most of the crowd (including anyone who wanted to join in who hapeened to be visiting the museum) participated in a drum circle- great fun.
I love TSARI, not only because the group has been a tremendous source of support, but it's really wonderful being around an entire group of people where no explanation is needed. My husband and I are in complete agreement that home is a place where Liam should be able to tic completely freely, but it's great to have another safe haven where no explanation is needed and there's no odd glances or comments and Liam doesn't have to even think about his tics.

School Days

One of the biggest issues with TS is school. I have been blessed to have some amazing educators and administrators who work with me to solve our issues. It wasn't always this easy. And it still isn't this easy. It's a daily battle and no matter how prepared educators think they are for this, you're never prepared enough.

Kindergarten sailed along pretty easily for Liam. In first grade we were surprised to have his teacher tell us that he was not the well behaved, easy going, sweet, smart child that we knew at home. At parent teacher conferences there were complaints about Liam not focusing and speaking out. Second grade was better- we had talked to his pediatrician and identified that he had a tic disorder. I was still in the rookie mode of trying to communicate the various tics to his teacher so that she would know what was a tic and what wasn't. Third grade was a nightmare. I was not well enough armed with information to support Liam- and I wasn't ready to get a diagnosis. Partly because my pediatrician's recommendation to me was that a lot of kids have tics at some point and they usually go away. Partly due to the stigma attached to "Tourette's". His teacher was, by all accounts, the teacher that everyone wanted. Sadly, she was not the best match for my guy. She wanted order and neatness and quiet. She would send home hours of recopying for Liam to do because nothing was neat enough. He was staying in at recess everyday for getting out of his seat and for not doing his work neatly enough. This, of course, only made the tics and the outbursts worse because he had no way to get it out of his system. Then, when I was totally demoralized and broken and thought I'd failed as a parent, we got a ray of sunshine in Liam's 4th grade teacher. Empathetic, kind, thoughtful, and caring he made me feel not like a failure as a parent, but helped to guide me to get Liam diagnosed. With the diagnosis we were able to get into place an official document of all of the strategies that were working for Liam in the classroom in a 504 plan. Accademically, not a stellar year, but it made a world of difference in my mindset as a parent.
Now we're in 5th grade, with a no nonsense teacher who feels comfortable with approaching me and who I feel comfortable talking to about what may help my son to learn more effectively. I received an email from her today asking me how she can identify what's a vocal tic and what's him speaking out in class. It made me feel so lucky to have an educator who is working with me to try to make her class run more smoothly and not automatically treating my child like a behavior problem. With a big sigh of relief that she asked, I directed her to an article on the tsa-usa website for educators about dealing with vocal tics in the classroom.

On my best days with Liam he is sweet and smart and philosphical and loving and empathetic and artistic. On my worst days with Liam he is flighty and not a great student and moody and scattered. In other words, he's just like his mom. School was difficult for me being flighty and scattered and artistic, and that's who he is- school would be difficult with or without the TS. My job as a mom is to try to make it the best learning environment that I can for him and give his teachers the best help that I can by educating myself and them.

The med decision

My grandmother is 91 and told me a few years ago that her doctor had prescribed her a daily medication for something. She told me that she knew that she was acting like a petulant child, but she had gotten along just fine until now without taking anything, and thought she could go on doing so. I figure by the time you're 91, you should probably get to make that choice. My grandma also tells me all the time that her Italian half and her Old Yankee half battle it out. I think when medication comes into play, it's that old Yankee half that wins- the puritanical side gets the edge. I'm not sure if this is genetic, or just the way I was raised, but I hate the idea of medication. I have to be practically on my death bed before I'll take a pain killer, and when the relief finally kicks in I tend to think "you idiot, why didn't you do that sooner?" My husband seems to have the same general feeling on this, I can't tell you how bad his allergies need to get before he realizes he should probably take some antihistimine.

Well, with that mind set, I remember marching into the Neuropsych office, jaw set, thinking "I WILL NOT let them try to put my baby on medication." So we went over the diagnosis and the options and my husband and I both said "no meds". The doctor told us that Liam had a Tourette Syndrome diagnosis that was comorbid with ADHD. The hyperactivity in Liam manifested itself not so much in the typical bouncing off the walls, but more a lack of focus. He explained to us that the medications that he could give Liam to increase is focus and help the ADHD would increase the tics. And that there were medications that he could give us to help with the tics. That was at the end of March 2010.

One of the recommendations from the Neuropsych evaluation was that we go to see a Neurologist. We had already been involved with the RI TS Association by this point and got the name of the Neurologist that several of our fellow TS Association members were using. We went to see Dr. Brown at the beginning of July to make sure that we were "only" dealing with TS and there weren't any other neurological issues. He told us that he agreed with Liam's TS diagnosis, but disagreed with the ADHD diagnosis, and saw some OCD behaviors. He explained that many TS children that he sees (he felt) were misdiagnosed with ADHD because the tics cause the children to lose focus. He asked me to imagine trying to read something and then having to rapidly blink my eyes during whatever I was reading. He told me that he thought meds could really help Liam with his concentration, and peer acceptance, and that we'd be medicating to try to alleviate the tics. My stomach knotted, I had that immediate "no meds" reaction. He told me he was going to do something unfair and ask Liam what he wanted. While I know this is going to sound stupid, I don't think I ever thought about asking Liam. I just had my immediate "no meds" reaction. I wanted the world to adjust to Liam's tics, and for Liam not to have to endure any side effects of drugs. At that point Liam said that he absolutely didn't even want to think about trying them. Dr. Brown said that that was our answer. He then told us that we needed to decide what the line in the sand was-when we would know it was time to start the meds. In my mind the word that immediately flashed there was "never" but after that was "maybe".

August 2010- we had just been on a camping trip for a week and had been home for a day when we went to a party with a bunch of children that Liam didn't know, they were from Diane's play group when she was little. He had a wonderful time while we were there and I realized that I noticed hardly any tics. When we got home, the line in the sand that Dr. Brown had spoken of had been crossed. I guess I didn't realize it conciously, but when you're a mom, watching your child struggle like that is the worst feeling in the entire world. Liam was having horrible full body tics. He could not walk across the room. We were getting ready for soccer practice and his legs were ticing so badly that I was having a hard time helping him get his feet into his cleats. His arms were ticing so badly that this simple task of putting on his shoes would have been impossible for him to handle by himself. On the way to soccer practice I heard a soft voice from the back seat say "mom, I think I want to try the medicine".

We've had Liam on the clonodine for almost a month now. It has not been "the answer" but there have been two days where we've forgotten meds at night and we've noticed a huge difference the next day in the amount and severity of the tics. I read on message boards and other blogs and the face book TSA page about the meds that others are taking and wonder how much, how many different ones, what's the line in the sand when we switch to something with worse side effects that may actually backfire and make the tics worse. I guess there's no right answer, but for now we're getting by.

yesterday

There's been few worse days for me as a mother with Liam's Tourette's than yesterday...so far. I go to the TSA page on FB and read what other kids are going through and feel horrible for them and think "Thank God he doesn't have that one" and in the next instant I realize how many new tics have emerged so quickly, and realize that we could be dealing with a new dreaded tic by the time he gets off the bus. I watch videos or read articles and think,"thank goodness we don't have this comorbid condition, or this issue", but it's so constantly shifting that I know that all I can be thankful for or get through is any given moment or given day.

So, yesterday-
The highs can seem so high, and the lows so low- and minutes apart. Liam's soccer coach came over to me when I got back to the field after running to the grocery store and told me that Liam had asked if the team could gather around for a meeting. His coach told me that he was so impressed with how beautifully Liam had explained his TS to his team mates. I was so so very proud of him. Five minutes later I was sitting on the benches at midfield watching my son play goalie and listening to a squealing tic escalating. It was getting louder and more frequent. With the increase in noise level came several "stop it"s and "cut it out!"s and "stop making that noise"s from the other team. The more they yelled at him, the more frustrated he became and the worse the tics got. My heart was pounding, I went and stood closer to the goal, still on the sideline, holding myself back, using all the strength I could muster not to grab my son and leave. Not to yell at the other adults "why are you letting them talk to my child like that?!" Not to beg the kids to please please stop making his tics worse. At the end of the game, I hugged Liam and told him that I was bringing him home for some tea with honey and lemon, knowing that this particular tic really hurts his throat. I pulled the other coach aside and let him know about Liam's diagnosis and asked him to please discuss it with the children on his team and to let them know that we would LOVE for Liam to be able to stop making that noise. That it hurts him, and it annoys him, and we'd love for it to stop. And that the more they yell stop it, and cut it out, and stop doing that, the worse it is for everyone because it only makes the tics escalate.

The bad days feel like a million small battles sometimes. Battling to educate, battling to get Liam through the day with some semblance of normalcy, battling to choose between keeping him in a bubble, or making sure that he's active and taking the opportunity to educate others to accept him and to accept the condition and the hand that he's been dealt.