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.