"Id rather people ask"

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

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

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

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

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

the medical dilemmas

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

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

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

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

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

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

Fifth Grade blues

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

TSARI awareness day

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

School Days

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

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

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

The med decision

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

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

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

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

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

yesterday

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

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

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