The meds come up again...

We're back into our school routine and things seem to be going well.

We have our therapy appointments on Tuesdays after school. The tics seem to be doing a lot better and we decided that we need to start working with Liam's time with his therapist on some other issues. For the past two weeks in therapy we've been talking to our therapist about impulse control and how we can work on that with Liam. She said that one thing that we may want to do is talk to our neurologist about meds. Big deep breath. My immediate reaction was "NONONONONONO" but I said "well, we have a neurologist appointment next week, we'll talk to him about it."

For the entire week, I've been searching my soul on how I feel about this. Vascilating. Talked to Brian, my husband. His immediate reaction without being open at all was "absolutely not". Talked to friends. One friend said "well, you need to just be open to putting it out there and listening and seeing what the doctor has to say. Then you'll at least have your options."

Yesterday morning I went into the neurologists office expecting the worst, expecting to be pushed into putting my child on stimulants. Playing some crazy balancing act with having to push up the tic meds to balance the side effects of the ADD meds. We talked for awhile about my concerns about Liam's moodiness. The neurologist thought that it was perfectly normal developmentally and was not concerned. We then moved on to Liam's impulsivity. He asked both of us a lot of questions and said that he felt as though Liam should only be medicated for his impulsivity if it was interfering with school. He also said that he hadn't seen Liam tic at all throughout the whole appointment and was really happy with how his HRT was coming along. He said that he thought if Liam keeps doing as well with his HRT that we should talk to his therapist about taking him off of the clonodine next summer.

Huge relief.

Back to School

So I got a call from the team leader of Liam's grade (who we had met with towards the end of last year). She set up a meeting with me to meet with his teacher and his science teacher (He only switches teachers for science and electives).

I went to the meeting yesterday. Much to my delight, Liam's older sister (who can do things specifically designed to terrorize her brother, as all older sisters only can) was very nice about Liam's luck of the draw this year. I told her who Liam's teacher was and the response was "Oh, she's really nice, EVERYONE loves her." I was very happy to hear that. Liam thrives with the kinds of teachers that kids love- which isn't neccessarily the same as the kind of teachers parents love, though often they're one in the same. I was a little nervous at first because the team leader is so friendly and nurturing and I thought she would have been a perfect fit for Liam, but the teacher he got seems just as wonderful.

I got to the school and we went to his new classroom to check it out. I was happy to see that his teacher had it arranged with the desks in small groups of 4 (which will remind Liam of how his 4th grade class was set up and put him at ease).

We sat and talked about all of the things that were on the list from the last meeting. All three of the teachers had Special Ed. degrees in addition to their regular teaching degrees and started out in Special Ed. which is fantastic. I was also thrilled that they really seemed to understand that the tics are not the primary issue with Liam, that that can be a problem, but it's also the impulisivity, anxiety and OCD issues that can be really tough with him when it comes to school. They also seemed to understand that handwriting and neatness should not be the be all and end all of how a student is graded (thank goodness!). When I mentioned that before he was diagnosed in third grade his teacher sent him home with hours of recopying every night because it wasn't neat enough and his letters were not formed properly, they all winced. (YAY!) We worked on a plan for sensory breaks that include a yoga ball in a room close to his room that's supervised and where he's accounted for. We also discussed ensuring that others in the building know about his TS so that he is not punished for making noises or fidgeting. His teacher was beyond thrilled to learn that he's very open about talking about it and willing to do a presentation for the other kids.

We set up a time for Liam to go in next week for him to meet his teachers,get his schedule, walk around the building, check out where his locker is and where the room he will be taking sensory breaks is going to be. His orientation is tonight, which he'll be away for, but I'll be here.

Overall I have a very good feeling about going into this school year. I'm really happy with our new therapist and think that will be a great match as well in terms of getting him adjusted to his new school.

Popular

WHEN I SEE DEPRESSING CREATURES
WITH UNPREPOSSESSING FEATURES
I REMIND THEM ON THEIR OWN BEHALF
TO THINK OF
CELEBRATED HEADS OF STATE OR
SPECIALLY GREAT COMMUNICATORS
DID THEY HAVE BRAINS OR KNOWLEDGE?
DON'T MAKE ME LAUGH!

THEY WERE POPULAR! PLEASE--
IT'S ALL ABOUT POPULAR!
IT'S NOT ABOUT APTITUDE
IT'S THE WAY YOU'RE VIEWED
SO IT'S VERY SHREWD TO BE
VERY VERY POPULAR
LIKE ME!

Nothing quite as flattering as the veiled threat of a law suit. New name, same content. Sticks and stones may break my bones, but the changing the name of my blog won't hurt me ;)

Too much togetherness?

People keep asking how our trip to Quebec was, and overall it was a wonderful trip. It was jam packed with tons of sightseeing.Unfortunately, this made for some snippy parents and very tired little boys. Not to mention that sleeping on an air mattress (many times with one or two boys in our sleeping bag) did not help. There were other contributing factors to the lack of sleep- many nights it was our resident skunk. One night it was raccoons who thoroughly enjoyed the container of nuts that somehow missed the evening cleanup. One night it was Liam having a nightmare about being stuck in a straightjacket (he was really stuck in the foot end of his sleeping bag). He almost stood up and ran through the wall of the tent. Luckily, I made it to the zipper of his sleeping bag before that happened.
One thing that on reflection has been really tough for me is that being with Liam when he's not ticcing very much but having a TON of other TS related issues is really really tough as a mom. Much tougher than the tics. We seem to be getting a really good handle on our HRT and we even came up with a response for a new tic. Liam started shouting "SUCKER" at completely inappropriate times to his brother and sister. At first I didn't realize what was going on, having not heard any vocal tics for awhile and just ignored it at first but started asking him to knock it off when it got annoying. Luckily, Brian shot me a nasty look at one point when I said in a not so nice voice to cut it out. So I sat down with Liam during a quiet moment and asked him if it felt like a tic. We worked through it and were able to come up with a response. He's done an amazing job at working through it and I'm so proud of him.
What was much tougher on me, and on all of us, was the impulsivity and Liam's growing need for independence. It was unbelievably tough in two cities (especially the old parts of the cities with tiny sidewalks and streets that would suddenly change from pedestrian walkways to streets with cars zooming through them) to try to make him understand that racing away from us to play in a really cool looking fountain was not ok. I think because of the lack of tics lately, it's been much harder for me to remember that he can't control this and that it's part of the whole picture. We had a lot of discussions about trust and responsibility and explained to him that until we can get his impulsivity under control, it's really tough to give him the independence that he's craving.
Before we went on vacation, we talked with his therapist about setting some goals of things to work on that aren't tic related since his tics are pretty calm right now. I talked to him about working with his therapist on the impulsivity and seeing if that's something that we can work on together. He agreed, but did not seem very happy about the idea even though he knows that this is what he needs to do to be given more independence.

HRT upset

School's out, which means that life is much easier on the TS front for the most part. The only thing that hasn't gotten easier is HRT. We missed two weeks, one week Liam was not able to go, and the next week his therapist was on vacation. We've been doing well at home so this wasn't a big deal. We had a tough time transitioning from his former therapist to HRT initially because the approach is so different. Our former therapist (who we hope to get back to when we have the HRT all figured out) does a lot of art and play therapy. Her office is filled with toys and art materials. The first appointment she ever had with Liam, she told him that he could touch anything that he wanted to touch in the office, except her desk. HRT is done in very sterile looking rooms with no distractions. No toys, no art meterials. HRT is very much right down to business, and Liam clearly does not feel as comfortable with his new therapist. That being said, he's definitely warmed to her and has opened up to her lately.
This week, we went in for our normal appointment and she started by letting us know that she had some tough news for us. She would be leaving. It's a teaching clinic and they made the new assignments for next year and she'd been sent someplace else. So we will have a new therapist. This clearly did not sit well with Liam as he does not like change. When we got going in our session we talked about how our practice was going and I mentioned that when Liam is mad at me and I tell him to use his response he looks at me and tics worse on purpose to upset me. We tried to work with Liam on dealing with this issue. Unfortunately it didn't go well. One of my biggest fears with TS is the tics where Liam hurts himself. Liam's therapist asked him what he thought he could do instead of retaliating by ticcing more on purpose because that wasn't really helpful. He said "what if I scratch myself?" And he proceeded to dig his nails into his leg and rake his fingernails up his leg. His therapist and I both told him that we didn't think that that was a really good way of dealing with it that it should be something that is calming and doesn't hurt him, but it was too late. I sat there and helplessly watched Liam make big red welts all down his leg and arms. I know that the bigger deal I made about it at the time, the worse it would have gotten. I tried really hard to show no reaction at all after my initial "I don't think that that's a good idea, let's think of something else" but I'm sure he saw how much it upset me. I know that hearing the news that he was in for a change in a therapist now that he's feeling comfortable with this one did not help this whole process along. I'm really hoping that he takes to his new therapist well and quickly because I think we're generally having some really good success with the HRT.

I am woefully behind on updating my blog...

...but maybe that's a good thing. I think part of the reason that I haven't been updating is because Liam hasn't been ticcing quite as badly. It comes with the territory it's summer vacation.

So I'm going to give you a big jumble of an update with all that's been going on.

First thing that springs to mind is baseball. As those of you who consistently follow my blog know, sports has been a mixed bag for us. I've found that I have to be very in your face with coaches and ask them to tell all of the kids on the team about Liam's TS. We've had some awful experience with sports and coaches and some wonderfuls ones. This year with baseball was wonderful. Liam's coach was fantastic, and he told me at one point that playing baseball really made him happy. I think in the past he just did it out of an expectation. It's spring, time for baseball. This year he loved it. I'd been telling myself that this was the last year. Next year he ages up to Majors which is a bigger time requirement and he'll be at the middle school so the time requirement for homework will be more intense. Then the last game of the season came, followed shortly by an email:
Hello Tim,
The Matrix Power Picks for All-Stars are 1)Mike 2)Liam and 3)Daniel. Congratulations to these players for an outstanding season.

Sometimes God or the Universe sends you these messages that are fairly undeniable. And this message was, your boy loves playing now and is being recognized by the coach of the 1st ranked team in his division going into the playoffs as one of the three best kids on the team. Time to put aside the hurts of the past and the fears that he might have a tough time and let him play.

School ended on a fairly good note. Liam got good grades and is looking forward to Middle School. I still have some mixed feelings about his teacher this year. But, I recognize that it was a tough year for her as well with lots of kids who were not easy in the class.

HRT- HRT seems to be going really well. Liam is doing really well with his responses. It's much easier to work with him while we're both at home. We also hung up little signs all over the house to remind him that he needs to practice. I have an alarm set on my cell phone to remind us to practice every day at 2. We'll see how this works.

Orthodontist. The kids' dentist (who I love) really likes our orthodontist because he thinks they have a similar philosophy. I really like that he's very close to our house. That said, he's kid of gruff and old school and tends to be a little difficult. Not a problem with Diane, but I've had a tough time getting him to understand Liam. I asked Liam if he wanted me to find someone else, but he said that it was ok. The good news is, he had put a fence in Liam's moutth to get him to stop sucking his fingers. It's been very successful and now Liam's problem with his assymetry is fixed. Now we just need to deal with an overbite.

Last TSA meeting/minigolf- last night was the last TSA meeting, minigolf of the year. Like many other things in Rhode Island, the TSA goes on break.
It was really nice for me to be with the other mommies. It was nice for the boys to be with their buddies. There was one really bizarre moment when we were gathering in the parking lot. One of the girls ticced. And it sounded quite a bit like Liam's old squealing tic. Liam asked loudly "WHAT WAS THAT?!" I was horrified. I couldn't believe after all we've been through with his tics that he'd say that. I guess it's a good sign that he doesn't really have any loud noticeable tics right now so it didn't occur to him not to react like that. I pulled him aside and quietly whispered. "Liam that was her tic, remember, like your loudn squealing one that you used to have" I got a huge "Ohhhhhhhhhhhhhhhhhh" in reply.

Now we're looking forward to summer, and All-stars, and camp, and camping, and not so much on the braces, but they'll be on by the time school starts.

Our first HRT success

I started writing a very long entry earlier today about our experience with HRT and how it's going so far. It was an explanation not only of the process but also a recap of our three appointments thus far. Suffice it to say, it requires a lot of hard work and retraining the way we think about TS.We've spent our first real working week with it tracking one of Liam's motor tics. This particular tic is especially upsetting to listen to -he grinds his teeth horribly. So we spent a week tracking the tics and keeping notes on how many times he had it during a particular time period, who was around,how they reacted, how Liam was feeling at the time. Then today during the session we dissected the tic. We talked about what happened during the tic and leading up to it.

One of the most difficult parts of this process is that Liam had built up such a great relationship with the therapist that we were seeing before we started the HRT, and he hasn't built up the kind of rapport and trust he had with his last therapist with the new one. This has been a huge source of stress for me -I've spent a lot of time second guessing if I'm doing the right thing for him.

So after our week of tracking and a large part of our session spent dissecting his tic,we started working on a competing response. Liam refused to try using the response the therapist suggested, insisting that it would not work.We finally came up with the idea of him pushing his tongue against the roof of his mouth,relaxing his lower jaw and letting it hang down a little bit, and taking a few deep breaths through his nose. We practiced a few times in the office before we left. He worked on doing this when he felt the tingle that he feels prior to the tic.

Later on, while we were at his music school, about to leave from his trombone lesson, I noticed him doing his competing response. I asked him about it after we left. He said it had worked, he was going to tic, but instead used his competing response. He broke out with a huge grin across his face, and iw as screaming in excitement in the parking lot.

I know we have a long road ahead of us, but if this can bring him a little bit of relief, I could not be more thrilled.

Sometimes...

 

...I like to share the thoughts of others. This was posted on the national TSA Facebook page from a mom on Mother's Day. Love it.

God Chooses Mom for Disabled Child 

Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993

 

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

 

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.

" Finally, he passes a name to an angel and smiles, "Give her a handicapped child." 

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." 

"But has she patience?" asks the angel. 

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." 

"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy." 

"But, Lord, I don't think she even believes in you." 

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles.  "A mirror will suffice." 

Rough night

So we had a bad night last night. Liam has always been freaked out by ticks. (Ironic, no?)
Over the course of the weekend, we've found two ticks- neither of them actually attached- on him. The first his dad found crawling on him. The second was on the table right next to him last night, he must have brushed it off without realizing it. His OCD has gotten worse lately. He REFUSES to take a shower until it's dark. He says it just feels "wrong". So we're dealing with timing other things around this latest issue and trying to talk him into giving it a shot since soon it will be light until after his bedtime. In addition to that, he had a complete meltdown absolutely convinced that there were ticks on him. I told him I would do a thorough check. He wouldn't let me near him, he was sobbing and hysterical. He finally went upstairs to do his homework only to come down a few minutes later still hysterical, telling me that after every problem he did he needed to check his whole body for ticks, he says he knows that they're there and he just can't find them.
I finally sent his dad upstairs to talk to him because I was feeling so helpless trying to assure him that nothing was there and telling him to let me check for him. It took his dad a half an hour to calm him down. Liam said he was never going to go outside again. I told him that because we have a cat and dog who both go outside we can't prevent the ticks getting in the house.
I'm hoping for a speedy stop to this since the kids can finally enjoy the outdoors.

It's a Tourette filled day (in a good way!)

A few months ago, a friend who works at a private school in Providence told us that a speaker with TS was coming to the school where she works. I immediately blurted out "Is it Marc Elliott?!" Marc is a 25 year old motivational speaker who is known internationally for speaking about tolerance. I have seen various clips of him and was so impressed by what I had seen that I really wanted to see him live. She said "I don't know, but you and Liam are welcome to come as my guests". A few days later she touched base via email and it was indeed Marc Elliott that we were getting the chance to see! This morning (after I called Liam out of school) we hopped into the car and drove to Providence to meet our friend. She met us outside of the building and as we walked into the entrance to the auditorium, Marc was standing there talking to one of our friend's coworkers. She introduced us, and Liam and Marc had the chance to chat. Marc is exuberant, funny, charismatic, self effacing and genuinely kind and caring. He treated Liam like he was a rock star. I told Marc that we were having an all TS day lined up- Marc, our first appointment with our new therapist who is going to work with Liam on HRT, and our monthly TSA meeting. Marc gave Liam some excellent advise on HRT. He told him that it may really help him a lot, that it is A LOT of hard work, and most importantly, not to beat himself up inside if it doesn't work for him.

Liam left to use the rest room and Marc explained to us that lots of times when you're trying to control the urge to tic it's overwhelming and it's all you can concentrate on. He said that it takes a lot of hard work for HRT to be successful.

There were a few things that really stuck out from his presentation. He talked about tolerance, and why teaching tolerance is more important than teaching acceptance. While acceptance is the ideal that we should all strive for, we are all human, and we all make assumptions about other people all the time. The important thing to remember is not to turn those assumptions into actions. Live and let live.

Marc mostly told stories of peoples' reaction to him. The story that I think will stay with me for a very long time was that he asked someone who had a very accepting reaction to his TS why he was so accepting. The other man "Jay" (who Marc met on a subway platform in NYC) said that he was on a bus one day and there was a very loud kid screaming at the front of the bus while Jay was at the back. Everyone on the bus was kind of talking about why the father (who appeared to be sitting next to the child) wasn't doing anything. Finally someone else on the bus walked up to the dad and said "will you please control your child?". The father explained that they were on their way home from the child's mother's funeral. Jay's take away from this experience was that you never know what is going on in someone else's life, you never know what challenges they are facing. If you can be accepting, that's the ideal, but at the very least we should all be tolerant.

After the presentation, Liam and I went up to stay good bye, and you would have thought Marc was saying good bye to his best friend in the whole world, he gave Liam a big hug.

(to visit Marc's website, go to the link on the right hand side of the page)
So now we're on to TS adventure #2 of the day- Liam's new therapist, Dr. Bidwell. I'm nervous but hopeful that this will help Liam feel more comfortable.

Tonight we're going to our monthly TSA meeting. This month one of his new friends is bringing Yu Gi Oh cards, TSA meeting and Yu Gi Oh duel combined- what could be better?

Matt Giordano

We had the pleasure of seeing Matt drum and hearing him speak at the September RI TSA Meeting this year. Can't share the speaking with you, but here he is drumming. Enjoy.

One step forward, two steps back

I got the call today. The one I've been waiting for for quite some time. The Anxiety Research Clinic is taking Liam as a patient. They will work with him on CBT and Habit Reversal Training. While I'm a little hesitant to pull him away from his therapist that we've been seeing, I want him to give this a try. They will be working with him to realize the feeling of a tic coming on and develop a competing response to try to lessen the tics.
There are a few schools of thought on this within the TS community. Some feel that it is an awful lot of work for little return. Some feel that it's not good for people with TS to suppress their tics. I feel that Liam does this anyway on his own, and if he can get some help with better ways to do this, it will be easier for him. I explained to him that it may help him with turning his loud squealing tic into something that's less noticeable and easier for him to deal with in public. I asked him how he felt about that. He said he wasn't sure.

He told me that he was taking his break today at school. He takes two timed walks and has permission to take walks whenever he needs a break. He usually is able to suppress his tics in the classroom and lets out his loud squeals on his walks. He told me that today while he was taking his walk an adult told him that "that is enough of that" when he was walking near her and he ticced. I asked him who it was. He said "I don't know, some parent." He told me that he tried to explain but he ticced again and she told him to stop it.
So while I feel that the world should conform to Liam and be more supportive and less judgemental, if we can help him to lessen the tics and make it easier for him not to have such severe tics, we'll give it a shot.

Report Card YAY!

To say that this has been a challenging year academically would be an understatement. It does not help that Liam's sister is academically a superstar- I don't believe she has ever brought home less than an A. So while we don't make the comparison, I'm quite certain he does. This has been a year fraught with average grades for him, and he's unbelievably hard on himself. I try to highlight the positive of what he's done well in when he brings home a report card, and remind him that if he did his best, that's all we care about. The biggest accomplishment for me was the comment!
First marking period the comment was: Liam is impulsive and inconssistanyt in his daily work.
This made me seethe. Did she not read his 504 plan and the information that I had attached to it about Tourettes being more than just the tics? I tried to discuss this with her at the parent teacher conference and she was fairly dismissive and wanted to discuss what Liam was doing well academically and her fears for bringing him up to speed for middle school. I thought second quarter would be better. Nope.
Second marking period comment: Liam likes to make his own directions rather than following the directions given. His written work is not always organized well.
No, Liam has a neurological disorder that makes it very hard for him to follow directions given and sometimes he needs to have it gone over in a little more detail and time. Liam also has in his 504 plan that all writing assignments should be done with a graphic organizer because he has a hard time organizing his thoughts when writing.
The thing that made me most furious in these comments is that by fifth grade, we all know that Liam is reading the comments himself as soon as he gets out of the classroom door. I had this discussion at our last 504 plan meeting and asked his teacher to PLEASE email me or call me with those types of comments and to try to find something positive to say about my child in his report card because he comes home pale as a ghost and horrified when he has to hand them to me.
I am happy to say that this report card was different- he burst in the door and yelled "mom I got a great report card!" And it is. All As and Bs, not a single C in sight. A check mark in needs to work on self control and needs to work on working independently. And the piece de resistance in my opinion:
Third marking period comment: Liam has shown improvement in all areas.

New sports season, new people to tell

We got the info on Liam's first baseball practice this year. I have mixed feelings about that these days. He's getting to an age where it's less acceptable to skip practices, but if I know he's overstimulated and tired after school, it's really hard for me to take him to practice. I also had to write the obligatory email to the coach in response to his email regarding the first practice:

We're looking forward to it! FYI- we put it on Liam's registration, but just so you know ahead of time, Liam has Tourette Syndrome. It's a neurological disorder that makes him have motor and vocal tics. The motor tics are pretty small (at the moment). His vocal tics can be pretty loud. He does not have coprolalia ("the swearing tic").
Tim Howard (the soccer player) and Jim Eisenreich both have TS.
We're very open about it, please feel free to pass this on to other parents (though many of them may already know, it's always good to let people know ahead of time). If you have any questions, please feel free to contact me or Brian :)


I have mixed feelings about doing this- part of me feels like I should let it come out organically, but that leads to misconception and I'd rather have it just out in the open at the beginning. I have flashbacks to my worst moment with Liam's TS with me standing helpless on the sidelines while the kids on the other team screamed at him to stop making that noise. I wanted to run out on the field and grab him and hug him and bring him home away from that. Instead I waited just on the edge of the field, and smiled at him as he came off and we talked to the other coach about TS when the game was over. It was one of the worst moments of my life. The other coach was fantastic and understanding, but there's only so much you can do in the moment. If it were left to me, we would stick with karate where everyone already knows Liam and just ignores the tics. I know that's not fair to him and not good for him. So off we'll go to baseball and hope for the best.

A Tale of Two Meetings

One big transition that's been weighing on me has been the transition from Elementary School to Middle School. I called the Principal at the Middle School and asked him if we could meet and discuss the transition and what would make it easier on Liam.

Meanwhile, Liam was feeling sort of down one night and asked if I could come and snuggle with him. He started crying and told me that he was being punished at school for using a silly voice. He told me that he hated doing it, it was a bad habit and he just couldn't stop. I asked him if it was a tic. He said, no, it didn't "feel" like a tic, but he really couldn't stop. His teacher has been reprimanding him for it, and some of the other children have been doing it, and Liam's been getting blamed. He said one day, he thinks a chair squeaked and he got reprimanded. My "mama bear" instinct totally kicked in, and I emailed the teacher and cced the Principal to explain that Liam was not able to control it and the reprimanding needs to stop. She said that she asked him if it was a tic and he said no. The difficulty comes into the equation in that hardly anyone with TS JUST has TS. Liam also has OCD, and tends to fixate on things when reprimanded rather than redirected. This is hard for me as his mom to understand and recognize, it must be very hard for his teacher who is dealing with a classroom full of kids, all with different needs. While I respect that, my concern is for my son, not the other kids or the teacher.

My first meeting was with the Principal of the Middle School and the 6th grade team leader. My husband came and we discussed transitioning in general and Liam's specific needs. I was put very much at ease, and feel so much better about the tranisition. They have a sensory break room with a swing and a yoga ball and some scooters. I feel that this is going to be a good break for Liam when he feels he needs to "bounce" and the swing will probably be helpful as well. We talked about the rest of the staff. The last thing I want is for Liam to get punished in the cafeteria or by a substitite and we talked about my concerns. We also talked about the best way to deal with his behavior- planned ignorance and redirection. His seating- not in the front, not in the back, to the side and near the door. Discrete break signals. And where he could go to let out his tics- the bathroom is where Liam will probably feel the most comfortable. They were supportive of Liam coming in whenever he needed to over the summer to put his anxiety to rest, and the Principal suggested that we plan to come a few days before the official orientation for an orientation just for Liam so that he feels more confortable at the one with his peers. We discussed the Teen Ambassador coming in to do a presentation for the older kids who have not been with Liam in a few years and won't know what to expect. I left hoping that the team leader is Liam's teacher, loved her. And the principal was fantastic too.

I've had a very nice relationship with Liam's current Principal. She's been very supportive of Liam. I have had a love/not so love relationship with his teacher this year. It's been a tough year. I want to push him, but also know how tough it gets for him. We decided to leave the 504 plan as is, and I asked her to be very cautious about reprimanding to try to not get Liam fixated on a behavior. I also asked her to email me with things like him being impulsive and blurting things out with each individual instance so that we can try to work on those rather than a general comment of "he's impulsive". She did have some great ideas for Liam, including having him work on his keyboarding skills over the summer so that if he's having a rough time writing he can type. She also mentioned a film program that he might enjoy during the summer, so we're going to look into that for him.

Next to Normal

I had the opportunity to go see Next to Normal at Providence Performing Arts Center. It was such an emotionally draining show- very powerful. The performances were wonderful. For any of you who have been reading my blog for awhile, you'll know the personal struggle I've faced with the medication decisions. I think it becomes normal for those of us facing neurological disorders to discuss the various pros and cons of different meds. I used to be one of those smug people on the outside looking in thinking "I'd never medicate my child, how could people do that to their babies". When you're looking at it from the perspective of what will give you or someone you love some relief from their symtoms, the perspective totally changes. The song that resonated the most with me was "Who's Crazy/My Pharmacologist and I"

Dan:
Who's crazy?
The husband or wife?
Who's crazy?
To live their whole life
Believing that somehow
Things aren't as bizarre as they are?

Who's crazy—
The one who can't cope,
Or maybe the one who'll still hope?
The one who sees doctors
Or the one who just waits in the car?

And I was
A wild twenty-five,
And I loved
A wife so alive,
But now I believe I would settle
For one who can drive.

Doctor Fine: [Spoken]
The round blue ones with food, but not with the oblong
White ones, the white ones with the round yellow ones
But not the trapezoidal green ones. Split the green ones
Into thirds with a tiny chisel, use a mortal and pestle to grind...

Diana:
My psychopharmacologist and I...
It's like an odd romance—
Intense and very intimate,
We do our dance.
My psychopharmacologist and I...
Call it a lover's game—
He knows my deepest secrets—
I know his... name.

And though he will
Never hold me,
He'll always take my calls.
It's truly like he told me:
Without a little lift,
The ballerina falls.

Doctor Fine: [Spoken]
Goodman, Diana. Bipolar depressive with delusional episodes.
Sixteen-year history of medication. Adjustments after one
Week.

Diana: [Spoken]
I've got less anxiety, but I have headaches, blurry vision,
And I can't feel my toes.

Doctor Fine: [Spoken]
So we'll try again, and eventually we'll get it right.

Diana: [Spoken]
Not a very exact science, is it?

Voices:
Zoloft and Paxil and Buspar and Xanax...
Depakote, Klonopin, Ambien, Prozac...
Ativan calms me when I see the bills—
These are a few of my favorite pills.

Diana: [Spoken]
Oh, thank, Doctor. Valium is my favorite color. How'd
You know?

Doctor Fine: [Spoken]
Goodman, Diana. Second adjustment after three weeks.
Delusions less frequent but depressive state worse.

Diana: [Spoken]
I'm nauseous and I'm constipated. Completely lost my
Appetite and gained six pounds, which, you know, is
Just not fair.

Diana, Doctor Fine & Voices:
May cause the following
Side effects, one or more:

Diana & Doctor Fine:
Dizziness, drowsiness,
Sexual dysfunction— Voices:
Headaches and tremors Diarrhea, constipation
And nightmares and Nervous laughter,
Seizures— Palpitations—

Diana, Doctor Fine & Voices:
Anxiousness, anger,
Exhaustion, insomnia,
Irritability,
Nausea, vomiting—

Diana:
Odd and alarming sexual feelings.

Diana, Doctor Fine & Voices:
Oh, and one last thing—

Doctor Fine:
Use may be fatal...

Gabe:
Use may be fatal...

Dan:
Use may be fatal...

Doctor Fine: [Spoken]
Goodman, Diana. Third adjustment after five weeks. Reports
Continued mild anxiety and some lingering depression.

Diana: [Spoken]
I now can't feel my fingers or my toes. I sweat profusely
For no reason. Fortunately, I have absolutely no desire for
Sex. Although whether that's the medicine or the marriage
Is anybody's guess.

Doctor Fine: [Spoken]
I'm sure it's the medicine.

Diana: [Spoken]
Oh, thank you, that's very sweet. But my husband's waiting
In the car.

Dan:
Who's crazy?
The one who's half-gone?
Or maybe
The one who holds on?
Remembering when she was twenty,
And brilliant and bold.
And I was so young,
And so dumb,
And now I am old.
Diana:
And she was And though he'll never
Wicked and wired. Hold me,
The sex was He'll always take
Simply inspired. My calls.
Now there's no sex, It's truly like
She's depressed, He told me—
And me I'm just tired. Without a little lift
Tired. Tired. Tired. The ballerina falls.

Who's crazy— My psychopharmacologist
The one who's uncured? And I,
Or maybe
The one who's endured? Together side by side...
The one who has Without him I'd die...
Treatments,
Or the one who just My psychopharmacologist
Lives with the pain? And I.

They say love is blind,
But believe me—
Love is insane.

Doctor Fine: [Spoken]
Goodman, Diana. Seven weeks.

Diana: [Spoken]
I don't feel like myself. I mean, I don't feel anything.

Doctor Fine: [Spoken]
Hmpf. Patient stable.

Dysinhibition

"The phenomenon known as dysinhibition is characterized by difficulty consistently

inhibiting thoughts and/or actions. Inappropriate statements or behaviors very

frequently result from the student's inability to consistently apply "mental brakes".

Dysinhibition means that a child cannot stop himself from expressing behaviors,

thoughts, or displaying actions that someone else may more easily be able to control.

Such behaviors might be displayed as excessive silliness, being sassy, freeassociative

comments, emotional outbursts, contextual swearing, blurting out,

inappropriate comments explosive anger and oppositional defiance. Picture a sign

that says, "Don't Touch, Wet Paint". For many of us, the sign is an invitation to touch

the paint. We must fight the urge to do so if we are to obey the sign

and the norms of society. We must inhibit the very behavior that has been suggested

to us by the sign. We can easily recognize inhibition as being difficult for all children

when we think of puddles on the sidewalk that are just begging to be jumped into.

Inhibiting behaviors is challenging for all children but it presents a far greater

challenge for students with TS due to this neurological disorder. We must understand

that this is not purposeful disobedience but is merely a function of the brain that is

affected by the chemical imbalances that cause TS.

A young boy's teachers had a difficult time believing that every time this second grade

student said something inappropriate or acted in an impulsive manner that it was a tic.

It is helpful if we understand that Tourette Syndrome is more than tics, and recognize

that many of the difficulties a student is experiencing are "symptoms" rather than tics.

All too often we think of verbal and physical tics as being the only symptoms of TS.

Many students whether they have severe or mild physical and vocal "tics" also have a

significant difficulty with the invisible but extremely disruptive symptom of dysinhibition.

Therefore when this student is told that his turn on the computer is over and he makes

an inappropriate remark, it is indeed a symptom of his TS. In these instances, it is best

to ignore the symptom, but to include counseling support as an accommodation in

order to teach him techniques that will help him to recognize that his “brakes" do not

always work well. Over time, he may learn to substitute a more appropriate behavior

but since the actions are impulsive, it may require a great deal of practice and

patience on everyone's part." From http://www.tsa-usa.org/



I'm having a tough time with making Liam's teacher understand this piece of the puzzle. I get that she wants to be firm.
I want to cry and yell and tell her to be nice to my kid so that he won't hate school.

Book Group

I have a very nice group of friends who I mostly met at the gym. We decided to start a book group. Yesterday was our first book group meeting in awhile. The book for this month was "Against Medical Advice" by James Cameron. I'd heard about this book on the Tourette Syndrome Association facebook page. Many of the people there warned that this was not a book that parents of newly diagnosed kids with TS should read, as it would be terrifying. I do have to admit that there were some sweaty palmed moments. The funny part of this is that I don't think the sweaty palm moments were probably the parts that my friends thought were terrifying. Most of the scary parts for my friends were what was going on with the drugs surrounding TS. Sadly, many people still do not understand that TS is not just a "tic disorder". Anyone diagnosed with TS is also diagnosed with a whole slew of other disorders. And as children grow, the associated disorders change. What needs to be treated the most changes as well. Our own struggle with the drug decision has been to medicate or not to medicate. For many it's how much medication and what combination. There's discussions of which disorder is causing most of the problems, and if we treat for the OCD, the anxiety is going to worsen so we have to treat for that as well.

For me  relating the book to our own family,  considering a family history of alcoholism on both sides, one of the most terrifying parts was the thought of Liam ever feeling the need and desire to self medicate with alcohol and drugs. We're working really hard with his therapist to come up with a plan for how to deal with his feelings and anxiety.
One of the other scariest parts for me, which I thankfully have not seen in Liam, is the self destructive compulsions. I watch friends of mine struggle with this and worry about them. In the booksome of the compulsions include: pulling the steering wheel of the car or climbing up a tree to the highest point possible even after falling through the branches. While I don't see this in Liam, I have friends who are going through these types of things and it scares me so much for them.

I'm thankful that my friends were so excited to read this book and gain a better understanding of TS.

I'm thankful that my friends were

School decisions

Let's face it, school for kids with TS is tough. It comes with all of the usual situations that are tough for kids, but it comes along with a whole slew of other issues. One of the things that I have continually reminded myself throughout this that makes us "lucky" is that we have one school in town for K-2. One school in town for 3-5. One school in town for 6-8. One school in town for 9-12. For a kid with TS this is ideal. There is no point in time where Liam will feel as though he needs to explain his TS to a whole new set of peers. Liam's older sister Diane is in 8th grade this year, and will be moving on to North Smithfield High School next year. We moved to this town partly because the school system has such a great reputation and we've been very happy with it so far. She will do great in a traditional college prep atmosphere, that's her thing and that's where she thrives.

So it probably comes as a shock to many that I'm researching high schools for my fifth grader. I think North Smithfield High School will be the perfect place for Diane, but I'm not so sure for Liam. I think he'd strive in a more creative personalized setting.

To this end, we went to an open house at Beacon Charter School last night. Liam's whole face lit up when we went into the theater room and he saw the set that was being built. He asked if the students get to build the set and questioned the teacher about the materials the students used to make the columns that were in the current set. I was floored by the visual arts department.As much as I loved my art teachers in high school- this was akin to the art education I received in college.
The decision for me came in the math room. Liam had obviously been holding in his tics. There were three kids giving us the tour. In our tour group was a mom and daughter. the daughter was looking to transfer from another high school. Also in our group was one of my friends and her son who are looking at high schools for next year. Liam let out a HUGE vocal tic. One of the kids giving the tour said "dude, why'd ya do that". Liam very matter of factly said "I have Tourette Syndrome. It's a neurological disorder. I can't help it." The kid giving the tour just shrugged, said "oh" and they continued talking about whatever the discussion was about before he ticced. I thought "yep, he can handle this just fine". 

Liam and I sat down at one point while we were waiting for our friends that we drove with to finish up with some questions they had. Liam turned to me with a big grin and told me he wanted to be put into the lottery to go there when he's in eighth grade. So while my eighth grader is traditional education bound and some of her friends are looking at other high schools (we saw several of Diane's friends from school, dance, etc), I'm thinking about high school alternatives for Liam. I think we'll also look into the MET, which uses an individualized learning approach with internships as well. And while I know I'm eschewing the safe and easy zone of having Liam be with kids he knows because it will be comfortable, I want him to be in a supportive creative environment where it's not about his TS but developing his unique potential.

Attitudes and Tolerence

I started this blog primarily as a documentation of what we're going through with Liam's TS and a way to vent. I also wanted our family and friends to understand what's going on. Sometimes I am amazed at how people react to my blog- because I think of it as my outlet and a teaching tool. I'm amazed when people tell me how much they get out of it and how much it means to them.

My mom is one of my biggest fans and cheerleaders- about everything, but definitely when it comes to this blog. We went to visit her at the hospital this past weekend. She went in for emergency surgery after some complications from her initial surgery that she had to repair her divericulitis. She told Liam how proud she is of him and what an inspiration he is. She said that the nurses all ask her how she keeps such a good attitude about all she's going through and that most people get very depressed about the surgery and long recovery. She told them that she's learned so much about dealing with adversity from Liam. I'm so proud of him for teaching, and proud of her for learning and telling him. And happy that this blog has helped with the process.

Along those lines, one of my heroes throughout this journey has been a young man named Marc Elliot. He goes to schools around the country to teach about tolerance. So far, Liam and I haven't had the opportunity to see him in person. But I have a faith that things happen for a reason. One of the other facets of my life where I try to educate and change perceptions is in my job. I am an Ava Anderson Non Toxic consultant. I joined the company because I was appalled at the toxic chemicals that were in my family's personal care products. So now I go and do home parties where I teach about what's going on in the cosmetic industry and sell a safe alternative. One of my recent hostesses happened to be Liam's Sunday School teacher. So after the party was over we were chatting about the kids and I mentioned Liam's TS. She didn't know that he had it but told me that they were having a speaker with TS come to the school that she works at and that she'd like to invite me and Liam come as her guests. I immediately blurted "is it Marc Elliot?". She wasn't sure, but she emailed me the info. Sure enough, it's Marc Elliot. I'm so excited and so thankful. I am so proud that we've put it out there to be forces for positive change with this rather than tried to hide it and act like it's a bad thing. Changing attitudes, creating tolerance.

Marc's website: http://www.whatmakesyoutic.com/

The med decision, again

In August we opted to put Liam on clonodine. I had a tough time with this. I am very hesitant to take any kind of medications and try to even avoid the antibiotics that most people scream for as soon as they get sick. I have been known to throw out pain killer prescriptions without getting them filled.

It was a tough choice to go on the clonodine, but one I felt was right at the time for Liam. I had a rough time with the way it was put across to us and am still trying to trust our neurologist. He asked Liam if he could take a pill once a day that would make the tics go away, would he take it? This seemed so unfair to me. Children are not equipped to make those decisions and there are other considerations. And what if it didn't work.

We finally opted to try out the clonodine and it seemed to help for awhile. With Liam's current moodiness and anxiety, I've started to wonder if this is really what we should be doing.

I called his neurologist today to have a chat with him and discussed the options. I'm so conflicted and scared. Part of me feels like I'm going down this path kicking and screaming. What are these meds doing to his body? It's a blood pressure medication and when we do miss a dose his whole little body gets so thrown. I was very honest and told his neurologist that I'm terrified of going down the path of multiple drugs one to help the tics, one to help the anxiety, one to help the moods. He told me he agreed and does not diagnose meds lightly and that he'd really like it if we didn't give up the time and investment we've put into this course. So hear I am, crying, agreeing to up the dose.

We have a little pillow that Brian's aunt gave him when Diane was born that says "Children Don't Come With Instruction Manuals". I keep thinking of that little pillow and wishing that someone would tell me what the right choice is.

Liam's thinking tree

There is a tree in the backyard. Liam calls it his thinking tree. He loves climbing up there and being by himself. Sadly, this is rough in the winter. He doesn't have as much time to himself and he is getting really fed up with his brother and sister and not having any alone time.
He wrote his dad a note yesterday. I struggled with this post because I didn't know if it would be invading his privacy to put this out there, but I asked him if I could write about it in my blog, and he gave me permission to paraphrase. He said he wanted to disappear. And that even though we seperated the boys' space in their room, Aidan annoys him and he wants his own space. He said that there's so much swirling around in his head, and sometimes he's not doing very well with it. He said that he was typing it because he's not very good at telling us.
It's been almost all I can think about all day.
I got him on a waiting list for a therapist to work on HRT therapy with him and took a break from the therapist we were going to. But right now what I feel he needs is his old therapist. So I called her this morning, and am hoping to get an appointment soon. She left her group and started her own practice which didn't take our insurance. She thought that they would have that worked out soon, so I'm hoping that she's all set with that now.
I'm scared. I want to help and just don't know how to make him feel needed, loved and safe. Babies are easy. This is tough.

Other moms

I got invited to join a group. I've been part of moms groups before. When Diane was little, I joined a group of breastfeeding mothers at Women and Infants Hospital in Providence. When the children were very small there was a breastfeeding supoort person from the hospital there to answer our questions. As the children got older, we moved to a different location and then finally realized that it was time to start rotating around to each other's houses because the kids were outgrowing the space and needed room to run around. We shared a special time together. These women and children define, in such a specific way, that part of my life. We went our seperate ways to some extent, some of the women staying in touch. Others of us losing track of each other through the years. We had a wonderful reunion of many of us last summer. It was amazing to see how the kids had grown and how instantly we picked back up. Lots of us are still in touch via facebook- the wonders of social networking.

The new moms group I was asked to join meets once a month. I feel blessed to have been asked, it's a wonderful group of women, and I instantly felt a kinship with them. They are all moms of special needs children. Instead of talking about plugged ducts and how much cereal our babies were eating, I was with women who instantly understood my angst at having Liam written up on the bus for his tic. I felt as though I could vent to them in a way I hadn't to anyone else about that event in our life. About how furious I was, and upset for him. There were five us total, and four of us were from the same town. For me this was such a pleasure. While the parents of the other kids in my TS group may understand what Liam's going through with his TS, these moms understood the school system that I've been working with much better. It was so nice to have other moms to talk to about the school in this way. They instantly understood my logistic concern for Liam when he enters middle school next year. Where will he be able to go to tic without feeling uncomfortable? Currently he's able to get outside easily, at the middle school he won't be able to. The talk of meds and services and sensory issues swirled around in such a comfortable way.

Today I'm feeling thankful for all of the supportive moms I know out there.

Spreading Awareness

Taken from the Center for Disease Control website:
"Community-based studies that include previously unidentified cases have reported estimates of 6-8/1000 children with Tourette Syndrome. The first-ever national estimate among a nationally representative sample of U.S. children revealed that 3 out of every 1000 children between the age of 6 and 17 in the United States have been diagnosed with Tourette Syndrome, according to a study by the Centers for Disease Control and Prevention released in the Morbidity and Mortality Weekly Report. Because this estimate is based on parent report of a Tourette Syndrome diagnosis, and diagnosis is less likely for children with limited access to health care services, this prevalence estimate is likely an underestimate of all the children who actually have Tourette Syndrome. "

Sadly, Tourette Syndrome is still horribly misunderstood by the general public. I spend a lot of time these days reading and posting on the National Tourette Syndrome facebook page. It's a great place to exchange ideas about ways to live with this more easily, sometimes just to vent in a place where you know other people will understand, and to share successes. One of the best things about it is that I've met people from all over the world who I instantly have a connection with. It's been a huge blessing. One of my friends from the national TSA facebook page is a mom in Korea who publishes a TS newsletter there. She's asked my permission to use Liam's article in her newsletter and will send us a copy when it's done. Liam is thrilled. He's being translated into Korean! Quite an accomplishemnt for a 10 year old writer. My friend has asked me to expand on it and write my own article. I'm so touched and honored to be asked. So I'll share it with you all.


My name is Beth Newberry and I'm the stay at home mom to three wonderful children, Diane (13), Liam (10) and Aidan (6). Liam was diagnosed with Tourette Syndrome on March 30, 2010. The diagnosis came as a relief for me, I finally had some answers and an explanation for what we'd been going through with Liam. When he was in preschool, we started to notice that he'd throw his head back and blink rapidly. I mentioned it when we went to his annual check up. The doctor told me not to worry about it, that it was a tic. She also said that he would probably grow out of it, or that the tics may change. She also told me to try to just ignore it because he might not even realize he's doing it and talking to him about it might make it worse.
The rest of preschool and Kindergarten went by without too many problems. When Liam got to first grade, his teacher complained quite a bit about his behavior. His tics were pretty mild, but she complained about his lack of control in class. Second grade was a nice respite. His teacher was much more flexible, and wonderful about communicating with me. I would let her know if I saw any new tics, and she would let me know if she noticed any. During this time period, my husband just thought that Liam needed us to be more strict and more structured and that he needed a teacher who would crack down on him and give him some discipline. The whole year was horrible. Liam's homework load would take several hours a night with me constantly on top of him to finish. It was stressful for both of us. On top of that, he was being kept in for most recesses because his handwriting was not "neat enough". His teacher kept insisting that he just needed practice, while I knew in my heart that something was really wrong and no amount of practice would make it improve. My husband was all on board with the strict approach, but Liam was so miserable. He was cooped up during the day, and then forced to sit for hours rewriting everything he had done during the day at night.
During these years his tics would change. Some of his tics included noises like blowing air through his lips which made a sound sort of like a horse. There was a lip pulling tic that would cause bruising. We also started to notice some echolalia where he would repeat things that other people said, but usually in the form of a song.
Fourth grade was a tough transition into a new school. His teacher was a wonderful man who has moved on to be a principal at another school. He was kind and caring, and realized that Liam was not just acting out to be difficult, but that he needed special accommodations to help him do his best. His teacher called in the OT to have her help to give Liam the type of things he needed in his classroom to help him concentrate on learning. I decided that it was time to find a neuro-psych group that would evaluate Liam for Tourette Syndrome. I got in touch with our pediatrician and told them that we needed a referral.
Liam was so relieved when we got his diagnosis. He finally understood why he was not able to control his body. I showed him The National TSA website and "That Darn Tic" a newsletter that they put out for kids, and written by kids. He was so happy to know that there were other kids out there with Tourette Syndrome too.
Liam's transition to fifth grade was tough. The work load got harder and leading up to the start of school, his tics got much worse. His motor tics increased to full body tics. He developed a vocal tic that's a loud squeal that sounds like a sharp whistle. Liam and I discussed the idea of him going on medication. While the medication has definitely not been a magic cure all, it definitely helped a bit with the tics. We've worked on dealing with his anxiety (which increases the tics) by working with a therapist and getting involved with the local TSA. We have also educated Liam's class and (thanks to a friend who runs an overall special needs education program at the school) his entire fifth grade class about TS. The school administration has been wonderful and supportive. I have a great line of communication with the principal who has been caring and supportive.
My next big goal is to get Liam's middle school ready for him. I'd like to get the principal and the staff ready for him to be there, and get the older kids ready to hear his shrieks in the hallways and bathrooms. I feel lucky to live in a fairly small town (10,000 people). A lot of the kids already know each other through the town sports programs and from the lower school.
This has been a big change in how I have to parent and what I need to do for my children. Overall, I think it's been a good change. I need to concentrate more on listening and on what Liam's needs are, and less on what my expectations are.

Vacation?

With all that's been going on this year I totally forgot to book our time share. We have a float week, so it's not automatically assigned, we need to book it at the beginning of the year. This year I forgot. So, several weeks ago I called up the reservation number and said "can I still book our week?" There was good news and bad news "Yes, ma'am, you can still book it, but you can't bank it". That answer meant that we suddenly had a large efficiency on the Cape for New Year's Eve. Since we had no other plans, we decided to take advantage of the opportunity to spend a few quiet days with the kids up on the Cape. Most people do not enjoy spending time in summer beach communities during the winter, but Brian and I have always loved going to the beach this time of year.
The downside was we hadn't traveled yet anyplace other than to visit family with Liam's tics this severe. When we went to Disney over the summer, there were definitely mild tics, but they were nothing like they are now.
We had a beautiful large room with a deck right across the street from the ocean. The boys immediately had to check out the deck. And of course, with his new surroundings and the excitement, Liam was squealing like crazy. For those of you who have read my blog before, you know that Liam's squealing tic is a high pitched squeal that's been compared to a whistle (not a soft whistle, a very loud shrill whistle) and someone even once thought that it was an alarm going off. The boys peered over the divider onto the next deck (as boys will always do) and found a mom and her, I'd guess, 1 year old sitting out there enjoying a meal. After the boys went in, I leaned over and explained to her that Liam has TS, and I really hope that the walls are thick so that the sound wouldn't bother them too much. She laughed and told me that she hoped the same thing for our sake because the baby would probably make just as much noise.
After we got a little bit of unpacking done, we gave in to the relentless demands to go in the pool. The tough thing about indoor pools, is the accoustics are amazing. One of Liam's triggers for his tics getting worse is excitement. Another is new places. Another is new people- especially new kids. We got to the pool and there were two people there. Both were boys about Liam's age. He was ticking like crazy. Every squeal bounced off of all the surfaces and sounded about 50 times louder. I remembered a game I used to play with my friends at summer camp where we'd go underwater and try to talk to each other. I asked him if he could try to go underwater to tic. He could get them out, and all of us would be saved our hearing. The two boys glared at him, thinking he was being intentionally obnoxious. The rest of their family eventually joined them, and I mentioned to the mom after several of Liam's tics that he had Tourette's and couldn't help the noise he was making. She looked thoroughly embarrassed and said cheerfully "oh, no problem!" I remember as an only child, always making friends with anyone who happened to be around so I'd have someone to play with. Despite Liam not being an only, he's always been very similar to me in that regard. In the past (before the tics were so severe), I'm sure he would have immediately made friends with the boys and they would have figured out some game to play that would have been infinitely more fun for 10 year old boys than playing with his "mean" older sister and "annoying" little brother.
Brian's never been a big fan of eating out with the kids. I love eating out no matter what, as long as the food is good. It's a break from the normal routine. Lately I hate eating out with the kids because it's a tough experience for Liam, much like I'm sure school is every day. He's trapped in a seat, holding in his tics. I can tell when he's starting to feel the need to tic and ask him if he'd like to use the restroom. It's infinitely more work than staying home and eating where he can tic all he wants without worrying about it. At home, the drink choices are water or milk, at restaurants it gets much more difficult. I used to have very strong feelings about handheld video games at the table, now that's out the window. Liam's tics usually totally go away while he's playing his DS, so now restaunts are a great place for him to bring in his DS.
With Liam's more severe tics vacations have changed. I'm happy that we had a "test run" of a quick, close to home 3 day vacation. Next year we'll be camping, lots of excercise and time outside will be good. We'll see where we are the year after that for our next Disney trip. Luckily while Disney is exciting, it's familiar.