There is a tree in the backyard. Liam calls it his thinking tree. He loves climbing up there and being by himself. Sadly, this is rough in the winter. He doesn't have as much time to himself and he is getting really fed up with his brother and sister and not having any alone time.
He wrote his dad a note yesterday. I struggled with this post because I didn't know if it would be invading his privacy to put this out there, but I asked him if I could write about it in my blog, and he gave me permission to paraphrase. He said he wanted to disappear. And that even though we seperated the boys' space in their room, Aidan annoys him and he wants his own space. He said that there's so much swirling around in his head, and sometimes he's not doing very well with it. He said that he was typing it because he's not very good at telling us.
It's been almost all I can think about all day.
I got him on a waiting list for a therapist to work on HRT therapy with him and took a break from the therapist we were going to. But right now what I feel he needs is his old therapist. So I called her this morning, and am hoping to get an appointment soon. She left her group and started her own practice which didn't take our insurance. She thought that they would have that worked out soon, so I'm hoping that she's all set with that now.
I'm scared. I want to help and just don't know how to make him feel needed, loved and safe. Babies are easy. This is tough.
Monday, January 31, 2011
Sunday, January 30, 2011
Other moms
I got invited to join a group. I've been part of moms groups before. When Diane was little, I joined a group of breastfeeding mothers at Women and Infants Hospital in Providence. When the children were very small there was a breastfeeding supoort person from the hospital there to answer our questions. As the children got older, we moved to a different location and then finally realized that it was time to start rotating around to each other's houses because the kids were outgrowing the space and needed room to run around. We shared a special time together. These women and children define, in such a specific way, that part of my life. We went our seperate ways to some extent, some of the women staying in touch. Others of us losing track of each other through the years. We had a wonderful reunion of many of us last summer. It was amazing to see how the kids had grown and how instantly we picked back up. Lots of us are still in touch via facebook- the wonders of social networking.
The new moms group I was asked to join meets once a month. I feel blessed to have been asked, it's a wonderful group of women, and I instantly felt a kinship with them. They are all moms of special needs children. Instead of talking about plugged ducts and how much cereal our babies were eating, I was with women who instantly understood my angst at having Liam written up on the bus for his tic. I felt as though I could vent to them in a way I hadn't to anyone else about that event in our life. About how furious I was, and upset for him. There were five us total, and four of us were from the same town. For me this was such a pleasure. While the parents of the other kids in my TS group may understand what Liam's going through with his TS, these moms understood the school system that I've been working with much better. It was so nice to have other moms to talk to about the school in this way. They instantly understood my logistic concern for Liam when he enters middle school next year. Where will he be able to go to tic without feeling uncomfortable? Currently he's able to get outside easily, at the middle school he won't be able to. The talk of meds and services and sensory issues swirled around in such a comfortable way.
Today I'm feeling thankful for all of the supportive moms I know out there.
The new moms group I was asked to join meets once a month. I feel blessed to have been asked, it's a wonderful group of women, and I instantly felt a kinship with them. They are all moms of special needs children. Instead of talking about plugged ducts and how much cereal our babies were eating, I was with women who instantly understood my angst at having Liam written up on the bus for his tic. I felt as though I could vent to them in a way I hadn't to anyone else about that event in our life. About how furious I was, and upset for him. There were five us total, and four of us were from the same town. For me this was such a pleasure. While the parents of the other kids in my TS group may understand what Liam's going through with his TS, these moms understood the school system that I've been working with much better. It was so nice to have other moms to talk to about the school in this way. They instantly understood my logistic concern for Liam when he enters middle school next year. Where will he be able to go to tic without feeling uncomfortable? Currently he's able to get outside easily, at the middle school he won't be able to. The talk of meds and services and sensory issues swirled around in such a comfortable way.
Today I'm feeling thankful for all of the supportive moms I know out there.
Thursday, January 13, 2011
Spreading Awareness
Taken from the Center for Disease Control website:
"Community-based studies that include previously unidentified cases have reported estimates of 6-8/1000 children with Tourette Syndrome. The first-ever national estimate among a nationally representative sample of U.S. children revealed that 3 out of every 1000 children between the age of 6 and 17 in the United States have been diagnosed with Tourette Syndrome, according to a study by the Centers for Disease Control and Prevention released in the Morbidity and Mortality Weekly Report. Because this estimate is based on parent report of a Tourette Syndrome diagnosis, and diagnosis is less likely for children with limited access to health care services, this prevalence estimate is likely an underestimate of all the children who actually have Tourette Syndrome. "
Sadly, Tourette Syndrome is still horribly misunderstood by the general public. I spend a lot of time these days reading and posting on the National Tourette Syndrome facebook page. It's a great place to exchange ideas about ways to live with this more easily, sometimes just to vent in a place where you know other people will understand, and to share successes. One of the best things about it is that I've met people from all over the world who I instantly have a connection with. It's been a huge blessing. One of my friends from the national TSA facebook page is a mom in Korea who publishes a TS newsletter there. She's asked my permission to use Liam's article in her newsletter and will send us a copy when it's done. Liam is thrilled. He's being translated into Korean! Quite an accomplishemnt for a 10 year old writer. My friend has asked me to expand on it and write my own article. I'm so touched and honored to be asked. So I'll share it with you all.
My name is Beth Newberry and I'm the stay at home mom to three wonderful children, Diane (13), Liam (10) and Aidan (6). Liam was diagnosed with Tourette Syndrome on March 30, 2010. The diagnosis came as a relief for me, I finally had some answers and an explanation for what we'd been going through with Liam. When he was in preschool, we started to notice that he'd throw his head back and blink rapidly. I mentioned it when we went to his annual check up. The doctor told me not to worry about it, that it was a tic. She also said that he would probably grow out of it, or that the tics may change. She also told me to try to just ignore it because he might not even realize he's doing it and talking to him about it might make it worse.
The rest of preschool and Kindergarten went by without too many problems. When Liam got to first grade, his teacher complained quite a bit about his behavior. His tics were pretty mild, but she complained about his lack of control in class. Second grade was a nice respite. His teacher was much more flexible, and wonderful about communicating with me. I would let her know if I saw any new tics, and she would let me know if she noticed any. During this time period, my husband just thought that Liam needed us to be more strict and more structured and that he needed a teacher who would crack down on him and give him some discipline. The whole year was horrible. Liam's homework load would take several hours a night with me constantly on top of him to finish. It was stressful for both of us. On top of that, he was being kept in for most recesses because his handwriting was not "neat enough". His teacher kept insisting that he just needed practice, while I knew in my heart that something was really wrong and no amount of practice would make it improve. My husband was all on board with the strict approach, but Liam was so miserable. He was cooped up during the day, and then forced to sit for hours rewriting everything he had done during the day at night.
During these years his tics would change. Some of his tics included noises like blowing air through his lips which made a sound sort of like a horse. There was a lip pulling tic that would cause bruising. We also started to notice some echolalia where he would repeat things that other people said, but usually in the form of a song.
Fourth grade was a tough transition into a new school. His teacher was a wonderful man who has moved on to be a principal at another school. He was kind and caring, and realized that Liam was not just acting out to be difficult, but that he needed special accommodations to help him do his best. His teacher called in the OT to have her help to give Liam the type of things he needed in his classroom to help him concentrate on learning. I decided that it was time to find a neuro-psych group that would evaluate Liam for Tourette Syndrome. I got in touch with our pediatrician and told them that we needed a referral.
Liam was so relieved when we got his diagnosis. He finally understood why he was not able to control his body. I showed him The National TSA website and "That Darn Tic" a newsletter that they put out for kids, and written by kids. He was so happy to know that there were other kids out there with Tourette Syndrome too.
Liam's transition to fifth grade was tough. The work load got harder and leading up to the start of school, his tics got much worse. His motor tics increased to full body tics. He developed a vocal tic that's a loud squeal that sounds like a sharp whistle. Liam and I discussed the idea of him going on medication. While the medication has definitely not been a magic cure all, it definitely helped a bit with the tics. We've worked on dealing with his anxiety (which increases the tics) by working with a therapist and getting involved with the local TSA. We have also educated Liam's class and (thanks to a friend who runs an overall special needs education program at the school) his entire fifth grade class about TS. The school administration has been wonderful and supportive. I have a great line of communication with the principal who has been caring and supportive.
My next big goal is to get Liam's middle school ready for him. I'd like to get the principal and the staff ready for him to be there, and get the older kids ready to hear his shrieks in the hallways and bathrooms. I feel lucky to live in a fairly small town (10,000 people). A lot of the kids already know each other through the town sports programs and from the lower school.
This has been a big change in how I have to parent and what I need to do for my children. Overall, I think it's been a good change. I need to concentrate more on listening and on what Liam's needs are, and less on what my expectations are.
"Community-based studies that include previously unidentified cases have reported estimates of 6-8/1000 children with Tourette Syndrome. The first-ever national estimate among a nationally representative sample of U.S. children revealed that 3 out of every 1000 children between the age of 6 and 17 in the United States have been diagnosed with Tourette Syndrome, according to a study by the Centers for Disease Control and Prevention released in the Morbidity and Mortality Weekly Report. Because this estimate is based on parent report of a Tourette Syndrome diagnosis, and diagnosis is less likely for children with limited access to health care services, this prevalence estimate is likely an underestimate of all the children who actually have Tourette Syndrome. "
Sadly, Tourette Syndrome is still horribly misunderstood by the general public. I spend a lot of time these days reading and posting on the National Tourette Syndrome facebook page. It's a great place to exchange ideas about ways to live with this more easily, sometimes just to vent in a place where you know other people will understand, and to share successes. One of the best things about it is that I've met people from all over the world who I instantly have a connection with. It's been a huge blessing. One of my friends from the national TSA facebook page is a mom in Korea who publishes a TS newsletter there. She's asked my permission to use Liam's article in her newsletter and will send us a copy when it's done. Liam is thrilled. He's being translated into Korean! Quite an accomplishemnt for a 10 year old writer. My friend has asked me to expand on it and write my own article. I'm so touched and honored to be asked. So I'll share it with you all.
My name is Beth Newberry and I'm the stay at home mom to three wonderful children, Diane (13), Liam (10) and Aidan (6). Liam was diagnosed with Tourette Syndrome on March 30, 2010. The diagnosis came as a relief for me, I finally had some answers and an explanation for what we'd been going through with Liam. When he was in preschool, we started to notice that he'd throw his head back and blink rapidly. I mentioned it when we went to his annual check up. The doctor told me not to worry about it, that it was a tic. She also said that he would probably grow out of it, or that the tics may change. She also told me to try to just ignore it because he might not even realize he's doing it and talking to him about it might make it worse.
The rest of preschool and Kindergarten went by without too many problems. When Liam got to first grade, his teacher complained quite a bit about his behavior. His tics were pretty mild, but she complained about his lack of control in class. Second grade was a nice respite. His teacher was much more flexible, and wonderful about communicating with me. I would let her know if I saw any new tics, and she would let me know if she noticed any. During this time period, my husband just thought that Liam needed us to be more strict and more structured and that he needed a teacher who would crack down on him and give him some discipline. The whole year was horrible. Liam's homework load would take several hours a night with me constantly on top of him to finish. It was stressful for both of us. On top of that, he was being kept in for most recesses because his handwriting was not "neat enough". His teacher kept insisting that he just needed practice, while I knew in my heart that something was really wrong and no amount of practice would make it improve. My husband was all on board with the strict approach, but Liam was so miserable. He was cooped up during the day, and then forced to sit for hours rewriting everything he had done during the day at night.
During these years his tics would change. Some of his tics included noises like blowing air through his lips which made a sound sort of like a horse. There was a lip pulling tic that would cause bruising. We also started to notice some echolalia where he would repeat things that other people said, but usually in the form of a song.
Fourth grade was a tough transition into a new school. His teacher was a wonderful man who has moved on to be a principal at another school. He was kind and caring, and realized that Liam was not just acting out to be difficult, but that he needed special accommodations to help him do his best. His teacher called in the OT to have her help to give Liam the type of things he needed in his classroom to help him concentrate on learning. I decided that it was time to find a neuro-psych group that would evaluate Liam for Tourette Syndrome. I got in touch with our pediatrician and told them that we needed a referral.
Liam was so relieved when we got his diagnosis. He finally understood why he was not able to control his body. I showed him The National TSA website and "That Darn Tic" a newsletter that they put out for kids, and written by kids. He was so happy to know that there were other kids out there with Tourette Syndrome too.
Liam's transition to fifth grade was tough. The work load got harder and leading up to the start of school, his tics got much worse. His motor tics increased to full body tics. He developed a vocal tic that's a loud squeal that sounds like a sharp whistle. Liam and I discussed the idea of him going on medication. While the medication has definitely not been a magic cure all, it definitely helped a bit with the tics. We've worked on dealing with his anxiety (which increases the tics) by working with a therapist and getting involved with the local TSA. We have also educated Liam's class and (thanks to a friend who runs an overall special needs education program at the school) his entire fifth grade class about TS. The school administration has been wonderful and supportive. I have a great line of communication with the principal who has been caring and supportive.
My next big goal is to get Liam's middle school ready for him. I'd like to get the principal and the staff ready for him to be there, and get the older kids ready to hear his shrieks in the hallways and bathrooms. I feel lucky to live in a fairly small town (10,000 people). A lot of the kids already know each other through the town sports programs and from the lower school.
This has been a big change in how I have to parent and what I need to do for my children. Overall, I think it's been a good change. I need to concentrate more on listening and on what Liam's needs are, and less on what my expectations are.
Wednesday, January 5, 2011
Vacation?
With all that's been going on this year I totally forgot to book our time share. We have a float week, so it's not automatically assigned, we need to book it at the beginning of the year. This year I forgot. So, several weeks ago I called up the reservation number and said "can I still book our week?" There was good news and bad news "Yes, ma'am, you can still book it, but you can't bank it". That answer meant that we suddenly had a large efficiency on the Cape for New Year's Eve. Since we had no other plans, we decided to take advantage of the opportunity to spend a few quiet days with the kids up on the Cape. Most people do not enjoy spending time in summer beach communities during the winter, but Brian and I have always loved going to the beach this time of year.
The downside was we hadn't traveled yet anyplace other than to visit family with Liam's tics this severe. When we went to Disney over the summer, there were definitely mild tics, but they were nothing like they are now.
We had a beautiful large room with a deck right across the street from the ocean. The boys immediately had to check out the deck. And of course, with his new surroundings and the excitement, Liam was squealing like crazy. For those of you who have read my blog before, you know that Liam's squealing tic is a high pitched squeal that's been compared to a whistle (not a soft whistle, a very loud shrill whistle) and someone even once thought that it was an alarm going off. The boys peered over the divider onto the next deck (as boys will always do) and found a mom and her, I'd guess, 1 year old sitting out there enjoying a meal. After the boys went in, I leaned over and explained to her that Liam has TS, and I really hope that the walls are thick so that the sound wouldn't bother them too much. She laughed and told me that she hoped the same thing for our sake because the baby would probably make just as much noise.
After we got a little bit of unpacking done, we gave in to the relentless demands to go in the pool. The tough thing about indoor pools, is the accoustics are amazing. One of Liam's triggers for his tics getting worse is excitement. Another is new places. Another is new people- especially new kids. We got to the pool and there were two people there. Both were boys about Liam's age. He was ticking like crazy. Every squeal bounced off of all the surfaces and sounded about 50 times louder. I remembered a game I used to play with my friends at summer camp where we'd go underwater and try to talk to each other. I asked him if he could try to go underwater to tic. He could get them out, and all of us would be saved our hearing. The two boys glared at him, thinking he was being intentionally obnoxious. The rest of their family eventually joined them, and I mentioned to the mom after several of Liam's tics that he had Tourette's and couldn't help the noise he was making. She looked thoroughly embarrassed and said cheerfully "oh, no problem!" I remember as an only child, always making friends with anyone who happened to be around so I'd have someone to play with. Despite Liam not being an only, he's always been very similar to me in that regard. In the past (before the tics were so severe), I'm sure he would have immediately made friends with the boys and they would have figured out some game to play that would have been infinitely more fun for 10 year old boys than playing with his "mean" older sister and "annoying" little brother.
Brian's never been a big fan of eating out with the kids. I love eating out no matter what, as long as the food is good. It's a break from the normal routine. Lately I hate eating out with the kids because it's a tough experience for Liam, much like I'm sure school is every day. He's trapped in a seat, holding in his tics. I can tell when he's starting to feel the need to tic and ask him if he'd like to use the restroom. It's infinitely more work than staying home and eating where he can tic all he wants without worrying about it. At home, the drink choices are water or milk, at restaurants it gets much more difficult. I used to have very strong feelings about handheld video games at the table, now that's out the window. Liam's tics usually totally go away while he's playing his DS, so now restaunts are a great place for him to bring in his DS.
With Liam's more severe tics vacations have changed. I'm happy that we had a "test run" of a quick, close to home 3 day vacation. Next year we'll be camping, lots of excercise and time outside will be good. We'll see where we are the year after that for our next Disney trip. Luckily while Disney is exciting, it's familiar.
The downside was we hadn't traveled yet anyplace other than to visit family with Liam's tics this severe. When we went to Disney over the summer, there were definitely mild tics, but they were nothing like they are now.
We had a beautiful large room with a deck right across the street from the ocean. The boys immediately had to check out the deck. And of course, with his new surroundings and the excitement, Liam was squealing like crazy. For those of you who have read my blog before, you know that Liam's squealing tic is a high pitched squeal that's been compared to a whistle (not a soft whistle, a very loud shrill whistle) and someone even once thought that it was an alarm going off. The boys peered over the divider onto the next deck (as boys will always do) and found a mom and her, I'd guess, 1 year old sitting out there enjoying a meal. After the boys went in, I leaned over and explained to her that Liam has TS, and I really hope that the walls are thick so that the sound wouldn't bother them too much. She laughed and told me that she hoped the same thing for our sake because the baby would probably make just as much noise.
After we got a little bit of unpacking done, we gave in to the relentless demands to go in the pool. The tough thing about indoor pools, is the accoustics are amazing. One of Liam's triggers for his tics getting worse is excitement. Another is new places. Another is new people- especially new kids. We got to the pool and there were two people there. Both were boys about Liam's age. He was ticking like crazy. Every squeal bounced off of all the surfaces and sounded about 50 times louder. I remembered a game I used to play with my friends at summer camp where we'd go underwater and try to talk to each other. I asked him if he could try to go underwater to tic. He could get them out, and all of us would be saved our hearing. The two boys glared at him, thinking he was being intentionally obnoxious. The rest of their family eventually joined them, and I mentioned to the mom after several of Liam's tics that he had Tourette's and couldn't help the noise he was making. She looked thoroughly embarrassed and said cheerfully "oh, no problem!" I remember as an only child, always making friends with anyone who happened to be around so I'd have someone to play with. Despite Liam not being an only, he's always been very similar to me in that regard. In the past (before the tics were so severe), I'm sure he would have immediately made friends with the boys and they would have figured out some game to play that would have been infinitely more fun for 10 year old boys than playing with his "mean" older sister and "annoying" little brother.
Brian's never been a big fan of eating out with the kids. I love eating out no matter what, as long as the food is good. It's a break from the normal routine. Lately I hate eating out with the kids because it's a tough experience for Liam, much like I'm sure school is every day. He's trapped in a seat, holding in his tics. I can tell when he's starting to feel the need to tic and ask him if he'd like to use the restroom. It's infinitely more work than staying home and eating where he can tic all he wants without worrying about it. At home, the drink choices are water or milk, at restaurants it gets much more difficult. I used to have very strong feelings about handheld video games at the table, now that's out the window. Liam's tics usually totally go away while he's playing his DS, so now restaunts are a great place for him to bring in his DS.
With Liam's more severe tics vacations have changed. I'm happy that we had a "test run" of a quick, close to home 3 day vacation. Next year we'll be camping, lots of excercise and time outside will be good. We'll see where we are the year after that for our next Disney trip. Luckily while Disney is exciting, it's familiar.
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