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.