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.