One thing that I've learned about TS is just when you think everything is on an even keel, hold on tight and get ready for a storm. As any parent of a young child knows, nothing throws kids off quite as much as the holidays. Kids with TS are especially thrown by change in their routine. In our house, not only are we dealing with the just gone Thanksgiving, fast coming Christmas, but we also are dealing with the unexpected loss of my grandmother.
Yesterday I took Liam to karate and was amazed by how much Liam was squealing in class. We were down to a few times a day, but this was at least once or twice a minute through most of the class. I was very proud of him for telling the other kids during their stretching period about his TS. Not only did he tell them, but he gave them the address for the national TS Association website. Thankfully, the owner of the dojo has had other kids with TS, so he's dealt with it before in his class and Liam loves him. His wife was very sweet and I was so touched to see her want to run in and tell the other kids to not yell at him or tell him to stop.
Today, I happened to be outside to get the kids off of the bus. I heard him squeal very loudly and saw his bus driver tense. I said to her after he got off "Liam told you that he has Tourette's, right?" She told me that he had told the bus monitor. She said that she didn't know if she could take it, and that sometimes it startles her while she's driving. While I sympathize, I bristled at the comment. She said some of the other kids yell at him to stop it. She said that the older kids were good about telling the little ones that he can't help it and the less they yell at him, the better it will be.
I asked him later if he wanted me to drive him to and from school. He said that he'd prefer to take the bus. He likes spending time with his friends on the bus. As much as I want to protect him from others being cruel, I'm proud of him that he's willing to tough it out and try to make them realize that it's something that they need to adjust to, even if it's difficult and annoying for them. I'm trying very hard to practice patience and empathy for the other kids and the driver and the monitor, but sometimes it's tough.
Wednesday, December 8, 2010
Thursday, December 2, 2010
parent teacher conference
My daughter's parent teacher conferences go something like this:
"Your daughter is wonderful, I can't say enough about how much I like having her in class, she's doing an excellent job, there's really nothing she can improve upon, what are you doing here?" I actually skipped her parent teacher conferences this year to go to Liam's monthly TSA meeting because I figured Liam and I needed our TSA meeting more than I needed to hear 7 teachers gush and ask me what I was doing there.
It should come as no shock that Liam's parent teacher conferences are not quite the same experience. Liam is empathetic, artistic, smart, and has TS. Which brings with it a whole set of behavioral problems. Kids with TS lots of times blurt out comments during class that are not pertinent to what's being discussed. They can't sit still. They move around a lot from the tics. They need to get up and move around the classroom or take a walk outside to get the tics out and refocus. They have lots of sensory issues that require different creative solutions. They make noise. They're inconsistent- some days the TS is practically non existent, and other days they can't stay focused, they're jumpy, and they're ticking like crazy. Many of them are incredibly impulsive. Most of them have dysgraphia (a hand writing disability that does not allow them to form letters well). Third grade was pretty much hell for Liam because of the dysgraphia. He had an old fashioned teacher who felt her mission in life was to make sure that every child coming out of her class have perfect penmanship. She was lovely, and a good teacher, but a stickler for neat, orderly and quiet. The end result of that for Liam was lots of work being sent home to recopy and lots of lost recess to redo work. I am to this day beating myself up emotionally that I allowed recess to be taken away and that I forced the poor kid to sit and redo page after page of trying to write neatly.
Liam's first quarter report card came home this year with "Liam is inconsistent and impulsive" written in the comment section. Then he came home with a time test (a time test?! For a kid with TS?!) that had a big red "parent signature needed" stamped across it. My heart sank. My stomach did flip flops. Did his wonderful teacher who I had such high hopes for totally not get it? Yesterday I spent time prepping. I gathered together the report card, the 504 plan, and 6 pages of information from the TSA website for educators, highlighted with info that I thought particularly pertained to Liam. I had a little mantra going in my head. "be patient, be understanding, be kind, know that she has lots of other kids with their own needs in her class and Liam cannot be her first priority all the time". I took a deep breath before I went in. I spent over 45 minutes with Liam's teacher. We had a wonderful conversation about how things were going with him, and the progress she had made with him, and we talked about some of the work she had dome to try to figure out what was associated with the TS and what was not. We had a discussion about how during the beginning of the year he would be rude to her, the aides, other kids- and how much it had improved. We discussed his medication and how it was going. We discussed some of the other things that TS can come with that Liam doesn't have. We talked about his TSA meetings and the article that he was writing for the class newspaper about having TS. We talked about the talent show and his magic act, and his group social studies project that he worked on first quarter. We talked about reading comprehension and how it's graded. We went over the 504 plan together to see if it needed any updating, and her fears for him heading into middle school.
It was a wonderful meeting, and put all of my fears to rest.
"Your daughter is wonderful, I can't say enough about how much I like having her in class, she's doing an excellent job, there's really nothing she can improve upon, what are you doing here?" I actually skipped her parent teacher conferences this year to go to Liam's monthly TSA meeting because I figured Liam and I needed our TSA meeting more than I needed to hear 7 teachers gush and ask me what I was doing there.
It should come as no shock that Liam's parent teacher conferences are not quite the same experience. Liam is empathetic, artistic, smart, and has TS. Which brings with it a whole set of behavioral problems. Kids with TS lots of times blurt out comments during class that are not pertinent to what's being discussed. They can't sit still. They move around a lot from the tics. They need to get up and move around the classroom or take a walk outside to get the tics out and refocus. They have lots of sensory issues that require different creative solutions. They make noise. They're inconsistent- some days the TS is practically non existent, and other days they can't stay focused, they're jumpy, and they're ticking like crazy. Many of them are incredibly impulsive. Most of them have dysgraphia (a hand writing disability that does not allow them to form letters well). Third grade was pretty much hell for Liam because of the dysgraphia. He had an old fashioned teacher who felt her mission in life was to make sure that every child coming out of her class have perfect penmanship. She was lovely, and a good teacher, but a stickler for neat, orderly and quiet. The end result of that for Liam was lots of work being sent home to recopy and lots of lost recess to redo work. I am to this day beating myself up emotionally that I allowed recess to be taken away and that I forced the poor kid to sit and redo page after page of trying to write neatly.
Liam's first quarter report card came home this year with "Liam is inconsistent and impulsive" written in the comment section. Then he came home with a time test (a time test?! For a kid with TS?!) that had a big red "parent signature needed" stamped across it. My heart sank. My stomach did flip flops. Did his wonderful teacher who I had such high hopes for totally not get it? Yesterday I spent time prepping. I gathered together the report card, the 504 plan, and 6 pages of information from the TSA website for educators, highlighted with info that I thought particularly pertained to Liam. I had a little mantra going in my head. "be patient, be understanding, be kind, know that she has lots of other kids with their own needs in her class and Liam cannot be her first priority all the time". I took a deep breath before I went in. I spent over 45 minutes with Liam's teacher. We had a wonderful conversation about how things were going with him, and the progress she had made with him, and we talked about some of the work she had dome to try to figure out what was associated with the TS and what was not. We had a discussion about how during the beginning of the year he would be rude to her, the aides, other kids- and how much it had improved. We discussed his medication and how it was going. We discussed some of the other things that TS can come with that Liam doesn't have. We talked about his TSA meetings and the article that he was writing for the class newspaper about having TS. We talked about the talent show and his magic act, and his group social studies project that he worked on first quarter. We talked about reading comprehension and how it's graded. We went over the 504 plan together to see if it needed any updating, and her fears for him heading into middle school.
It was a wonderful meeting, and put all of my fears to rest.
Saturday, November 27, 2010
I've never seen anything, how did you know?
Since we "came out" about Liam's TS, one of the most common things I hear from friends and family are things along the lines of "I've never seen anything, how did you know?". I'm always a little bit astounded as I've seen several tics a day (even on his best days) since he was in Kindergarten or first grade. Part of it is, of course, that I'm more tuned in to my kid than other people would be, so unless it's a really blatant tic, other people don't notice- unless they're aware of tic disorders and TS. I will never forget one of the first people that I told that we were going through the diagnosis process saying to me "oh, really? You don't have a diagnosis, I assumed you did". Her son has OCD and a tic disorder. I kind of liken it to buying a new car. You don't notice them on the road at all, then you buy one, and suddenly they're everywhere.
I'm still always a little bit surprised when close family and friends are taken by surprise by Liam's tics. I tell them what it's like, but like with anything else, I guess you can't really know until you live it. On Thanksgiving, the kids were all in the living room with my stepdad and my best friend's daughter playing cards. Me and my mom and my best friend were sitting at the dining room table still enjoying our dessert and tea. Liam had his squealing tic. Then it came again. My friend said "what the hell was that?". She thought my youngest was screaming. I told her and my mom "Oh, that's Liam's tic". They both looked so surprised, because I don't think they'd ever seen Liam have a bad tic before. My mom was getting ready to take Liam to her house for a few days, and suddenly, I think, the severity of Liam's TS made her nervous for the first time. I don't really worry anymore about what people will think when we're in public. Liam and I are both pretty good at explaining TS in a very concise way. My mom started asking if it would be ok to take him to this place or that. I told her he was very able to explain to people what TS is, and he'd done it several times. I told him as they were leaving that grandma would like to bring him to these places and if he had a tic and thought that it made people uncomfortable, he could explain to them that he had TS.
I guess like every mom with a kid with TS this age, I hope that he's one of the ones who essentially grows out of it. But if he's going to have to live with it, my hope is that he remains comfortable and confident enough in his own skin to be open with the people he loves about what he's going through and doesn't try to hold back in front of them.
I'm still always a little bit surprised when close family and friends are taken by surprise by Liam's tics. I tell them what it's like, but like with anything else, I guess you can't really know until you live it. On Thanksgiving, the kids were all in the living room with my stepdad and my best friend's daughter playing cards. Me and my mom and my best friend were sitting at the dining room table still enjoying our dessert and tea. Liam had his squealing tic. Then it came again. My friend said "what the hell was that?". She thought my youngest was screaming. I told her and my mom "Oh, that's Liam's tic". They both looked so surprised, because I don't think they'd ever seen Liam have a bad tic before. My mom was getting ready to take Liam to her house for a few days, and suddenly, I think, the severity of Liam's TS made her nervous for the first time. I don't really worry anymore about what people will think when we're in public. Liam and I are both pretty good at explaining TS in a very concise way. My mom started asking if it would be ok to take him to this place or that. I told her he was very able to explain to people what TS is, and he'd done it several times. I told him as they were leaving that grandma would like to bring him to these places and if he had a tic and thought that it made people uncomfortable, he could explain to them that he had TS.
I guess like every mom with a kid with TS this age, I hope that he's one of the ones who essentially grows out of it. But if he's going to have to live with it, my hope is that he remains comfortable and confident enough in his own skin to be open with the people he loves about what he's going through and doesn't try to hold back in front of them.
Wednesday, November 24, 2010
My TS Thanks Giving
Thanksgiving, much like New Year's, is a time for reflecting and seeing how things have changed over the last year. Last year at this time, we were still 4 months away from getting Liam his diagnosis. We've had a lot of changes.
This year I'm giving thanks for:
A diagnosis. It was tough prior to having a "name" for what we were going through.
The National TSA. As soon as we got our diagnosis, I spent a great deal of time watching videos and reading articles on the TSA website. Liam had felt so alone and was so happy to find kids his age, with similar interests, who also have TS. He was a different kid after I showed him "That Darn Tic" the TSA's newsletter for kids, by kids.
SELAC (Special Education Local Advisory Committee) One of the first people that I called when Liam was diagnosed was the President of our school district's SELAC. She was able to put me in touch with another TS mom whose son had gone through the system. It was great to get the perspective from someone who had been through what we were going through.
My mom friends whose kids have special needs. I can't even begin to describe the empathy that moms who have special needs kids feel for each other. It's like you're in a private club that others just can't begin to understand. They "get it" in a way that others cannot. Some of the most amazing support through this has come from friends whose kids are on the autism spectrum or have severe anxiety or OCD. It requires a shift in thinking that I don't think other parents can ever understand completely.
And as a subgroup to that- my TS mommies. I've met some amazing moms of other kids with TS. Some of them I've only met online, and some of them I've been lucky enough to get to spend time in person with. I'm incredibly thankful for them.
My adult friends with TS, It's great hearing from an adult perspective what it was like as a kid. And just having grown ups in our lives who have been there is such a source of strength.
Our local TSA- This is probably the thing that Liam gets more excited for than anything else all month. It makes him so happy to be with other kids who he doesn't have to feel self conscious around. Both the other kids with TS and the siblings. It's a great environment.
A good school system- while I have sometimes had frustrations, I've heard horror stories from other folks who couldn't get IEPs or 504 plans. We're very lucky.
Good friends and family.
This year I'm giving thanks for:
A diagnosis. It was tough prior to having a "name" for what we were going through.
The National TSA. As soon as we got our diagnosis, I spent a great deal of time watching videos and reading articles on the TSA website. Liam had felt so alone and was so happy to find kids his age, with similar interests, who also have TS. He was a different kid after I showed him "That Darn Tic" the TSA's newsletter for kids, by kids.
SELAC (Special Education Local Advisory Committee) One of the first people that I called when Liam was diagnosed was the President of our school district's SELAC. She was able to put me in touch with another TS mom whose son had gone through the system. It was great to get the perspective from someone who had been through what we were going through.
My mom friends whose kids have special needs. I can't even begin to describe the empathy that moms who have special needs kids feel for each other. It's like you're in a private club that others just can't begin to understand. They "get it" in a way that others cannot. Some of the most amazing support through this has come from friends whose kids are on the autism spectrum or have severe anxiety or OCD. It requires a shift in thinking that I don't think other parents can ever understand completely.
And as a subgroup to that- my TS mommies. I've met some amazing moms of other kids with TS. Some of them I've only met online, and some of them I've been lucky enough to get to spend time in person with. I'm incredibly thankful for them.
My adult friends with TS, It's great hearing from an adult perspective what it was like as a kid. And just having grown ups in our lives who have been there is such a source of strength.
Our local TSA- This is probably the thing that Liam gets more excited for than anything else all month. It makes him so happy to be with other kids who he doesn't have to feel self conscious around. Both the other kids with TS and the siblings. It's a great environment.
A good school system- while I have sometimes had frustrations, I've heard horror stories from other folks who couldn't get IEPs or 504 plans. We're very lucky.
Good friends and family.
Tuesday, November 23, 2010
this could be me
The National Tourette Syndrome Association posted this on their facebook page. It reminds me so much of me and Liam and our outlook and things that we deal with. It's a great little 3 minute slice of what it's like to have a child with a not terribly severe case of TS. I think most of the documentary type of things I've seen about TS tend to be about more severe cases.
http://www.parentsask.com/herstory/raising-son-tourettes
http://www.parentsask.com/herstory/raising-son-tourettes
Sunday, November 21, 2010
Fate?
I've had several friends mention that I haven't updated my blog lately- very accurate! There are several reasons- our whole family has been consumed with politics. For those of you who don't know, Liam's dad is a State Representative and we just went through his first (hopefully of many) reelection campaign. So the whole family has been busy with campaign activities all fall. Liam spent a lot of time on his scooter and skateboard out knocking on doors with his dad. The second reason is that as far as Liam's TS goes, we've pretty much been in a holding pattern. He's doing well on his meds, school is going ok, he's been busy with activities- so there hasn't been much to write about. I'm excited to say that I have something to write about!
Back in April after Liam got diagnosed I decided to find him a therapist to work with. I found a therapist who we LOVE who works with kids and does a lot of art and play therapy- which is perfect for Liam. They built up a really nice relationship. Then a little over a month ago a friend who reads my blog asked me if I'd give a friend of hers a call. Her friend had just recently gotten her daughter's TS diagnosis. We had a great talk and she mentioned that her daughter had gotten into a program where they were working with TS kids and doing habit reversal training, and best of all, they take insurance!
My big fear was figuring out how to take a break from Liam's current therapist to get him into this program. One of Liam's largest anxieties is change. I was afraid to rip him away from this relationship he'd built to try something new. Thankfully, the timing was perfect. The next time we went to his therapist's office, she asked if she could talk to me alone before we brought Liam in. She let me know that she was leaving the group she was with to go out on her own and that she was having a problem with our particular insurance company and it might be a little while before she could clear it up. I let her know about my conversation with the other mom and she was so happy that we'd found something. We were able to talk to Liam about it together and let him know that we thought it would be good for him to try this new type of therapy.
I spoke to the new doctor the other day. We're going to set up an intake interview within the next couple of weeks. Liam will be working on identifying when he's going to have a tic and work on generating a competing response so that the tics will be less severe. I have a lot of hope that this will help Liam with not only his tics, but the other problems that go along with TS.
Back in April after Liam got diagnosed I decided to find him a therapist to work with. I found a therapist who we LOVE who works with kids and does a lot of art and play therapy- which is perfect for Liam. They built up a really nice relationship. Then a little over a month ago a friend who reads my blog asked me if I'd give a friend of hers a call. Her friend had just recently gotten her daughter's TS diagnosis. We had a great talk and she mentioned that her daughter had gotten into a program where they were working with TS kids and doing habit reversal training, and best of all, they take insurance!
My big fear was figuring out how to take a break from Liam's current therapist to get him into this program. One of Liam's largest anxieties is change. I was afraid to rip him away from this relationship he'd built to try something new. Thankfully, the timing was perfect. The next time we went to his therapist's office, she asked if she could talk to me alone before we brought Liam in. She let me know that she was leaving the group she was with to go out on her own and that she was having a problem with our particular insurance company and it might be a little while before she could clear it up. I let her know about my conversation with the other mom and she was so happy that we'd found something. We were able to talk to Liam about it together and let him know that we thought it would be good for him to try this new type of therapy.
I spoke to the new doctor the other day. We're going to set up an intake interview within the next couple of weeks. Liam will be working on identifying when he's going to have a tic and work on generating a competing response so that the tics will be less severe. I have a lot of hope that this will help Liam with not only his tics, but the other problems that go along with TS.
Monday, November 8, 2010
Orthodontia and Substitutes
One of the bains of Liam's existence is substitute teachers. This is totally predictable, and I'm sure it's true for a lot of kids with TS. All of the angst we went through prior to Liam's diagnosis with teachers telling us he "wasn't behaving" are back again on days when there's been a substitute. And while in an ideal world we could educate all of the substitutes about TS, it just isn't as easily done as that. Teachers who have Liam all the time and other people who are around him all the time (including his family) have a hard enough time really understanding it, but to try to get a teacher who is not there all the time to understand why he's fidgeting, making a noise or talking out of turn is close to impossible. While Liam hasn't come home complaining about substitutes lately, I was reminded of this at the orthodontists office today. Liam had a tic where he was chewing on his fingers until they were bleeding. So I bought him a necklace, "chewlery", so that instead of putting his fingers in his mouth, he could chew on this necklace. Well, today his orthodontist (though I've explained to him several times that Liam has TS) insisted that it would be better if he not chew on his necklace. I cheerfully told him yet again that the option was the necklace or his fingers until he bled. At which point Liam showed him the scarring on his fingers to prove my point. I continue to be frustrated by people who seem to think that behaviors and tics associated with TS are "bad behavior" or "bad habits". The orthodontist is putting a cage in to stop his finger sucking (a bedtime habit that we've been unable to break), but told me that he'd need to stop chewing on his necklace too (definitely not a habit, but TS related as it's come on over the last 6 months). It frustrates me that teachers and people in the medical field aren't better educated.
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