Let's face it, school for kids with TS is tough. It comes with all of the usual situations that are tough for kids, but it comes along with a whole slew of other issues. One of the things that I have continually reminded myself throughout this that makes us "lucky" is that we have one school in town for K-2. One school in town for 3-5. One school in town for 6-8. One school in town for 9-12. For a kid with TS this is ideal. There is no point in time where Liam will feel as though he needs to explain his TS to a whole new set of peers. Liam's older sister Diane is in 8th grade this year, and will be moving on to North Smithfield High School next year. We moved to this town partly because the school system has such a great reputation and we've been very happy with it so far. She will do great in a traditional college prep atmosphere, that's her thing and that's where she thrives.
So it probably comes as a shock to many that I'm researching high schools for my fifth grader. I think North Smithfield High School will be the perfect place for Diane, but I'm not so sure for Liam. I think he'd strive in a more creative personalized setting.
To this end, we went to an open house at Beacon Charter School last night. Liam's whole face lit up when we went into the theater room and he saw the set that was being built. He asked if the students get to build the set and questioned the teacher about the materials the students used to make the columns that were in the current set. I was floored by the visual arts department.As much as I loved my art teachers in high school- this was akin to the art education I received in college.
The decision for me came in the math room. Liam had obviously been holding in his tics. There were three kids giving us the tour. In our tour group was a mom and daughter. the daughter was looking to transfer from another high school. Also in our group was one of my friends and her son who are looking at high schools for next year. Liam let out a HUGE vocal tic. One of the kids giving the tour said "dude, why'd ya do that". Liam very matter of factly said "I have Tourette Syndrome. It's a neurological disorder. I can't help it." The kid giving the tour just shrugged, said "oh" and they continued talking about whatever the discussion was about before he ticced. I thought "yep, he can handle this just fine".
Liam and I sat down at one point while we were waiting for our friends that we drove with to finish up with some questions they had. Liam turned to me with a big grin and told me he wanted to be put into the lottery to go there when he's in eighth grade. So while my eighth grader is traditional education bound and some of her friends are looking at other high schools (we saw several of Diane's friends from school, dance, etc), I'm thinking about high school alternatives for Liam. I think we'll also look into the MET, which uses an individualized learning approach with internships as well. And while I know I'm eschewing the safe and easy zone of having Liam be with kids he knows because it will be comfortable, I want him to be in a supportive creative environment where it's not about his TS but developing his unique potential.
Friday, February 18, 2011
Tuesday, February 15, 2011
Attitudes and Tolerence
I started this blog primarily as a documentation of what we're going through with Liam's TS and a way to vent. I also wanted our family and friends to understand what's going on. Sometimes I am amazed at how people react to my blog- because I think of it as my outlet and a teaching tool. I'm amazed when people tell me how much they get out of it and how much it means to them.
My mom is one of my biggest fans and cheerleaders- about everything, but definitely when it comes to this blog. We went to visit her at the hospital this past weekend. She went in for emergency surgery after some complications from her initial surgery that she had to repair her divericulitis. She told Liam how proud she is of him and what an inspiration he is. She said that the nurses all ask her how she keeps such a good attitude about all she's going through and that most people get very depressed about the surgery and long recovery. She told them that she's learned so much about dealing with adversity from Liam. I'm so proud of him for teaching, and proud of her for learning and telling him. And happy that this blog has helped with the process.
Along those lines, one of my heroes throughout this journey has been a young man named Marc Elliot. He goes to schools around the country to teach about tolerance. So far, Liam and I haven't had the opportunity to see him in person. But I have a faith that things happen for a reason. One of the other facets of my life where I try to educate and change perceptions is in my job. I am an Ava Anderson Non Toxic consultant. I joined the company because I was appalled at the toxic chemicals that were in my family's personal care products. So now I go and do home parties where I teach about what's going on in the cosmetic industry and sell a safe alternative. One of my recent hostesses happened to be Liam's Sunday School teacher. So after the party was over we were chatting about the kids and I mentioned Liam's TS. She didn't know that he had it but told me that they were having a speaker with TS come to the school that she works at and that she'd like to invite me and Liam come as her guests. I immediately blurted "is it Marc Elliot?". She wasn't sure, but she emailed me the info. Sure enough, it's Marc Elliot. I'm so excited and so thankful. I am so proud that we've put it out there to be forces for positive change with this rather than tried to hide it and act like it's a bad thing. Changing attitudes, creating tolerance.
Marc's website: http://www.whatmakesyoutic.com/
My mom is one of my biggest fans and cheerleaders- about everything, but definitely when it comes to this blog. We went to visit her at the hospital this past weekend. She went in for emergency surgery after some complications from her initial surgery that she had to repair her divericulitis. She told Liam how proud she is of him and what an inspiration he is. She said that the nurses all ask her how she keeps such a good attitude about all she's going through and that most people get very depressed about the surgery and long recovery. She told them that she's learned so much about dealing with adversity from Liam. I'm so proud of him for teaching, and proud of her for learning and telling him. And happy that this blog has helped with the process.
Along those lines, one of my heroes throughout this journey has been a young man named Marc Elliot. He goes to schools around the country to teach about tolerance. So far, Liam and I haven't had the opportunity to see him in person. But I have a faith that things happen for a reason. One of the other facets of my life where I try to educate and change perceptions is in my job. I am an Ava Anderson Non Toxic consultant. I joined the company because I was appalled at the toxic chemicals that were in my family's personal care products. So now I go and do home parties where I teach about what's going on in the cosmetic industry and sell a safe alternative. One of my recent hostesses happened to be Liam's Sunday School teacher. So after the party was over we were chatting about the kids and I mentioned Liam's TS. She didn't know that he had it but told me that they were having a speaker with TS come to the school that she works at and that she'd like to invite me and Liam come as her guests. I immediately blurted "is it Marc Elliot?". She wasn't sure, but she emailed me the info. Sure enough, it's Marc Elliot. I'm so excited and so thankful. I am so proud that we've put it out there to be forces for positive change with this rather than tried to hide it and act like it's a bad thing. Changing attitudes, creating tolerance.
Marc's website: http://www.whatmakesyoutic.com/
Thursday, February 3, 2011
The med decision, again
In August we opted to put Liam on clonodine. I had a tough time with this. I am very hesitant to take any kind of medications and try to even avoid the antibiotics that most people scream for as soon as they get sick. I have been known to throw out pain killer prescriptions without getting them filled.
It was a tough choice to go on the clonodine, but one I felt was right at the time for Liam. I had a rough time with the way it was put across to us and am still trying to trust our neurologist. He asked Liam if he could take a pill once a day that would make the tics go away, would he take it? This seemed so unfair to me. Children are not equipped to make those decisions and there are other considerations. And what if it didn't work.
We finally opted to try out the clonodine and it seemed to help for awhile. With Liam's current moodiness and anxiety, I've started to wonder if this is really what we should be doing.
I called his neurologist today to have a chat with him and discussed the options. I'm so conflicted and scared. Part of me feels like I'm going down this path kicking and screaming. What are these meds doing to his body? It's a blood pressure medication and when we do miss a dose his whole little body gets so thrown. I was very honest and told his neurologist that I'm terrified of going down the path of multiple drugs one to help the tics, one to help the anxiety, one to help the moods. He told me he agreed and does not diagnose meds lightly and that he'd really like it if we didn't give up the time and investment we've put into this course. So hear I am, crying, agreeing to up the dose.
We have a little pillow that Brian's aunt gave him when Diane was born that says "Children Don't Come With Instruction Manuals". I keep thinking of that little pillow and wishing that someone would tell me what the right choice is.
It was a tough choice to go on the clonodine, but one I felt was right at the time for Liam. I had a rough time with the way it was put across to us and am still trying to trust our neurologist. He asked Liam if he could take a pill once a day that would make the tics go away, would he take it? This seemed so unfair to me. Children are not equipped to make those decisions and there are other considerations. And what if it didn't work.
We finally opted to try out the clonodine and it seemed to help for awhile. With Liam's current moodiness and anxiety, I've started to wonder if this is really what we should be doing.
I called his neurologist today to have a chat with him and discussed the options. I'm so conflicted and scared. Part of me feels like I'm going down this path kicking and screaming. What are these meds doing to his body? It's a blood pressure medication and when we do miss a dose his whole little body gets so thrown. I was very honest and told his neurologist that I'm terrified of going down the path of multiple drugs one to help the tics, one to help the anxiety, one to help the moods. He told me he agreed and does not diagnose meds lightly and that he'd really like it if we didn't give up the time and investment we've put into this course. So hear I am, crying, agreeing to up the dose.
We have a little pillow that Brian's aunt gave him when Diane was born that says "Children Don't Come With Instruction Manuals". I keep thinking of that little pillow and wishing that someone would tell me what the right choice is.
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