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.