We started the morning again with the, "I don't wanna go to school" song. It is going to be a really long school year if every day starts that way. I told him if school was really that bad and he wanted to make the decision to end his school career at 2nd grade it left little options for what he was going to do with his life and if that was the decision he was going to make he would have to come with me to the lice clinic and I would teach him how to clean the shop and as he got better and taller he could help people with lice removal but that would be his option if he decided not to go to school anymore.
His response: "Fine I'll go to school."
I said if that is his choice then I would like to start each day happy and not with the, "I don't wanna go to school."
He said, "We'll see. I'll try."
The rest of the day that I spent with him before and after school he was just a happy boy. Had a snack after school. Looked at a photo essay with me that showed postcards from the 1950's and 1960's Poconos resort and then the photographer went back today and took photos in the same places to show how they have fallen in disrepair. He was very focused going through the essay. It totally kept his attention and he had very interesting ideas on what they could do with these beautiful spaces.
I didn't ask about his tics or anything like that.
I'm very anxious to see if he is back to the no school thing in the morning.
Thursday, September 7, 2017
Day 8 on meds - Wednesday
The day started with, "I don't want to go to school." He had a host of reasons - it is boring, it isn't fun, none of his best friends are in his class, he wants to be at home. But none of them were about his tics. Until we walked to the bus. He tried to tell me none of them knew about his tics until I reminded him that 2 kids in his class are on his bus and they each had a couple of siblings. And our neighbor who knows is on his bus and his best friend. He gave me a look like, "Dang it she figured it out."
At the bus he had 100 "what if" scenarios all with a negative spin on them. I had 100 responses all with a positive spin. He looked at me and said, "Stop being so positive!!" ... I told him I couldn't help it and that was just who I was and one day maybe he would hear the positive spin in his head and not worry about the negative. Then I asked him if he would try today to do that.
When he got off the bus he said, "worst day ever" (which he says often and I always tell him I hope this is his worst day ever because if that is the case his days are pretty good.) but when I heard it I thought all the worst. I asked him why it was such a bad day and he said, "My homework is to decorate my writing notebook and I have the most awesome Spiderman spiral notebook and I don't want to cover it up with decoration. And we had indoor recess and I didn't win playing Uno and you can only play with the people in your class." I asked, "was that it? those are what made it the worst day ever?" He responded, "Isn't that enough? That is terrible."
I explained that these were not terrible things and with thinking positively we could make changes. He told me you can't change the future. I tried not to laugh too hard when I said, "Actually Lincoln the future is the only thing you can change. You can't change the past - you can only learn from it."
I told him losing at Uno would help him become better in the future. Each time we play we learn a bit more which means we get better. So in the future if he applies what he learns in each game he will just get better and better. I also asked him if he had started writing in his writing notebook yet because if not he could keep his awesome Spiderman notebook to draw in and I have some plain spiral notebooks he could use to decorate for his writing notebook.
He was amazed. He still wasn't happy he lost in Uno because he can be quite competitive but once in the door he got one of the plain notebooks and drew an awesome picture on the front and problems were solved. He relaxed after that and until bed time there were only a couple of cursing episodes and bops.
At bedtime he said his bug bites were getting better because he didn't feel like he had to scratch so much.
I know I am looking hard for a difference and others may not see it the same way but we really do see a difference and that he is coping well with everything.
At the bus he had 100 "what if" scenarios all with a negative spin on them. I had 100 responses all with a positive spin. He looked at me and said, "Stop being so positive!!" ... I told him I couldn't help it and that was just who I was and one day maybe he would hear the positive spin in his head and not worry about the negative. Then I asked him if he would try today to do that.
When he got off the bus he said, "worst day ever" (which he says often and I always tell him I hope this is his worst day ever because if that is the case his days are pretty good.) but when I heard it I thought all the worst. I asked him why it was such a bad day and he said, "My homework is to decorate my writing notebook and I have the most awesome Spiderman spiral notebook and I don't want to cover it up with decoration. And we had indoor recess and I didn't win playing Uno and you can only play with the people in your class." I asked, "was that it? those are what made it the worst day ever?" He responded, "Isn't that enough? That is terrible."
I explained that these were not terrible things and with thinking positively we could make changes. He told me you can't change the future. I tried not to laugh too hard when I said, "Actually Lincoln the future is the only thing you can change. You can't change the past - you can only learn from it."
I told him losing at Uno would help him become better in the future. Each time we play we learn a bit more which means we get better. So in the future if he applies what he learns in each game he will just get better and better. I also asked him if he had started writing in his writing notebook yet because if not he could keep his awesome Spiderman notebook to draw in and I have some plain spiral notebooks he could use to decorate for his writing notebook.
He was amazed. He still wasn't happy he lost in Uno because he can be quite competitive but once in the door he got one of the plain notebooks and drew an awesome picture on the front and problems were solved. He relaxed after that and until bed time there were only a couple of cursing episodes and bops.
At bedtime he said his bug bites were getting better because he didn't feel like he had to scratch so much.
I know I am looking hard for a difference and others may not see it the same way but we really do see a difference and that he is coping well with everything.
Wednesday, September 6, 2017
Day 7 on meds - Tuesday
Well today was the first day of school and to say I was nervous would be an understatement! Linc woke up feeling pretty good and pretty excited. But the nerves were there you could see it. We are normally quite early for the bus but for some reason when we walked out today we were late and the bus was already at the stop. I think it turned out to be a good thing because he just ran to the bus. There was no standing around and over thinking the whole thing. Being that it was the first day I raced to the school so I could meet him when getting off the bus and walk him to class.
He walked through the halls saying hello to all the friends he had missed over the summer and then promptly sat down outside his class to wait to go in. The first thing he did when he sat down was pull out his "Taking Tourettes to School" book and showed it to the person sitting next to him and started to explain what it was. It was awesome.
I popped into the class to see the teacher for just a moment. Let her know we were sorry we dumped so much info on her over the weekend and that Linc had a book about Tourettes and that he wanted his class to know about it because he didn't want to worry anyone was going to tattle on him if he didn't something he wasn't supposed to. She said they were going to read aloud today and that she would read the book.
He came in and took his seat. She had a paper for them to fill out and as I stood in the hall talking to a friend I watched him look frustrated and upset. It broke my heart to leave him and I worried all day he was having a rough time of it.
I anxiously stood at the bus in the afternoon waiting for him to get off.
When I saw him bound down the stairs and proclaim, "Today was AWESOME" there are no words to describe how happy I was.
He said class was great. He said the teacher read the book and when she was finished one of the kids in class said, "that book was awesome I want that book." which made Linc feel great. He said once everyone knew about it he felt much better. He said he didn't think about trying not to do it as much because he wasn't worried about anyone getting mad anymore. I asked him if he had many tics during the day and he said he thought he had some but he wasn't paying attention so he isn't sure and that was a great enough answer for me.
He remained in a great mood the rest of the evening. He had several moments of vocal tics. Some cursing and some bop type sounds but nothing that was over powering him. He hasn't been picking at his bug bites nearly as much and the muscle tics are so slight now. His whole face scrunching where he would stop talking to get through the tic hasn't been happening. He does a bit with his eyes looking to the side but I don't even think he notices it and it doesn't stop him while he is doing something.
So glad day 1 of third grade was a positive one. Now just a couple hundred more and we'll be to summer again.
He walked through the halls saying hello to all the friends he had missed over the summer and then promptly sat down outside his class to wait to go in. The first thing he did when he sat down was pull out his "Taking Tourettes to School" book and showed it to the person sitting next to him and started to explain what it was. It was awesome.
I popped into the class to see the teacher for just a moment. Let her know we were sorry we dumped so much info on her over the weekend and that Linc had a book about Tourettes and that he wanted his class to know about it because he didn't want to worry anyone was going to tattle on him if he didn't something he wasn't supposed to. She said they were going to read aloud today and that she would read the book.
He came in and took his seat. She had a paper for them to fill out and as I stood in the hall talking to a friend I watched him look frustrated and upset. It broke my heart to leave him and I worried all day he was having a rough time of it.
I anxiously stood at the bus in the afternoon waiting for him to get off.
When I saw him bound down the stairs and proclaim, "Today was AWESOME" there are no words to describe how happy I was.
He said class was great. He said the teacher read the book and when she was finished one of the kids in class said, "that book was awesome I want that book." which made Linc feel great. He said once everyone knew about it he felt much better. He said he didn't think about trying not to do it as much because he wasn't worried about anyone getting mad anymore. I asked him if he had many tics during the day and he said he thought he had some but he wasn't paying attention so he isn't sure and that was a great enough answer for me.
He remained in a great mood the rest of the evening. He had several moments of vocal tics. Some cursing and some bop type sounds but nothing that was over powering him. He hasn't been picking at his bug bites nearly as much and the muscle tics are so slight now. His whole face scrunching where he would stop talking to get through the tic hasn't been happening. He does a bit with his eyes looking to the side but I don't even think he notices it and it doesn't stop him while he is doing something.
So glad day 1 of third grade was a positive one. Now just a couple hundred more and we'll be to summer again.
Tuesday, September 5, 2017
Day 6 on meds - Monday
Today was an insane day at work so I was only with Linc in the morning and then the evening. He spent the day with his sister and dad and they both commented that his physical tics were down but that there were still bursts of cursing. His sister said they seemed better but she also admitted she is a bit used to them and doesn't think much about it anymore.
Come evening it was a different story. He broke down. Bawling, worried, anxious and inconsolable. School was starting in the morning and he was so upset about it. He was nervous in general about starting 3rd grade and getting back into a routine and the tics. I was worried about him when we went to bed but knew he had to find a way to power through and embrace everything.
We got a book called "Taking Tourettes to School" and put it in his backpack. I told him I would tell the teacher about it so she could read it to the class if she wanted and he liked that idea. Now we just have to see how tomorrow will turn out.
Monday, September 4, 2017
Day 5 on meds - Sunday
Unfortunately I didn't get to spend a lot of time with Linc today because I had to work. We did hang out in the morning and he woke up in a great mood. He got a little frustrated playing a video game and was cursing a bit so I suggested he do something different. Playing with this new legos or reading for a while. He did but he contradictory statements were still there.
When I got home from work his sister was at a sleep over so Linc had me all to himself. I asked him how the medicine was making him feel and he said, "I don't know."
I asked his dad how he was during the day and he said there was some vocal tic but they got stronger around 6 PM. He thought that was when he had the most trouble.
Linc went to bed in a great mood. Talking about what he was going to do when he woke up in the morning and that he had a great day today.
When I got home from work his sister was at a sleep over so Linc had me all to himself. I asked him how the medicine was making him feel and he said, "I don't know."
I asked his dad how he was during the day and he said there was some vocal tic but they got stronger around 6 PM. He thought that was when he had the most trouble.
Linc went to bed in a great mood. Talking about what he was going to do when he woke up in the morning and that he had a great day today.
Saturday, September 2, 2017
Day 4 on meds - Saturday
I got to spend the whole day with Linc today. Again at home he was doing much better. I would say the cursing was a bit more than Friday and he was again correcting the negative things he says. He absolutely hates when he says something negative about someone that he immediately says the positive.
He was very upset that he kept saying, "Santa sucks just kidding santa is awesome." He asked if I thought Santa knew he had TS and didn't really mean the things he said. He seemed very worried that Santa would realize but I assured him Santa was totally aware and would not be upset at all with his tics. That gave him some relief.
He has been saving his money and decided today was the day he wanted to go to the toy store and spend some on Legos. So he and I headed out to the toy store. Gotta say there isn't anything quite like your adorable 8 year old walking down the aisle saying, "what the fuck what the fuck." The worry and pressure he felt in the toy store really showed. He was very excited at all the choices and that he had saved up so much so he was on rapid fire with his cursing. He was trying to cover his mouth and say it quieter. He did say, "I wish there were no little kids here so they wouldn't hear my tic" We picked out his legos, paid and headed for the car.
Once in the car I asked him how he was feeling. He said he felt so bad for the bad words and wished people knew he didn't mean to do it. And he wished people weren't judging him. I told him even without the tics people who care and love you will never judge you and people who do judge you aren't the ones that care and love you so there was no need to take to heart what those people think. I asked him if he would like to make a card that he could give people that told them what TS was that way if he thought people were judging him or didn't like what he was doing he could give them the card and then he would be taking a step towards teaching people how different we all could be. He loved the idea so when we got home we designed this card:
He was very upset that he kept saying, "Santa sucks just kidding santa is awesome." He asked if I thought Santa knew he had TS and didn't really mean the things he said. He seemed very worried that Santa would realize but I assured him Santa was totally aware and would not be upset at all with his tics. That gave him some relief.
He has been saving his money and decided today was the day he wanted to go to the toy store and spend some on Legos. So he and I headed out to the toy store. Gotta say there isn't anything quite like your adorable 8 year old walking down the aisle saying, "what the fuck what the fuck." The worry and pressure he felt in the toy store really showed. He was very excited at all the choices and that he had saved up so much so he was on rapid fire with his cursing. He was trying to cover his mouth and say it quieter. He did say, "I wish there were no little kids here so they wouldn't hear my tic" We picked out his legos, paid and headed for the car.
Once in the car I asked him how he was feeling. He said he felt so bad for the bad words and wished people knew he didn't mean to do it. And he wished people weren't judging him. I told him even without the tics people who care and love you will never judge you and people who do judge you aren't the ones that care and love you so there was no need to take to heart what those people think. I asked him if he would like to make a card that he could give people that told them what TS was that way if he thought people were judging him or didn't like what he was doing he could give them the card and then he would be taking a step towards teaching people how different we all could be. He loved the idea so when we got home we designed this card:
He loves them and can't wait till we get them.
We also called the Assistant principal and she was amazing on the phone. Letting Linc know everyone was there to support him and that they know he is a good kid. That the teachers and staff are there to make school awesome for him and he just needs to be himself. She also let him know that the principal, who Linc absolutely adores, had a student his first year of teaching that had TS so he understands what Linc is going through and worried about and he is always there for Linc. It was a fantastic phone call.
We were invited to a close friends house for dinner but at first Linc didn't want to go. The toy store was a bit hard on him and he was finally feeling a bit calmed down working on his legos. But he suddenly changed his mind and said, "I think it would be good to go." So we got dressed and headed over. Everyone there knew about his current tics and he came into the house saying, "I have TS and say some things I shouldn't but I don't mean it. Just want you to know." All the kids headed to the basement and had a blast. I asked his sister and her best friend at the end of the night how he was and they said he hardly cursed. The friend said she heard him say hell a couple of times but that was it. He came home very happy and went right to bed. It was good spending the evening with people he wasn't worried about judging him.
Day 3 on meds - Friday
Linc hasn't had any trouble taking his pill which is great. He looks forward to it.
His tics subside drastically while at home. We still had cursing today but down dramatically. He also took time to come sit out by the fire in the evening. He was quite chatty and his vocal tic mostly consisted of saying contradictory things. Things like, "This sucks, just kidding, this is great." The negative things he says bother him so much he feels he needs to say the positive right after.
His facial tics weren't all day long today. More off and on and just at the beginning of the week his mouth/nose/eye tic was so constant he would stop talking to get through it. Today I just noticed them here and there but they didn't interfere with whatever he was doing.
I didn't see him look at his fingers once, neither did his sister or dad.
He was also more positive throughout the day.
I did call the school and spoke with the assistant principal. I laid a lot of information on her. Since I had never brought the NF to their attention letting them know about that and the TS was a lot and she was awesome about it. She gave me her cell phone number and said she wanted to let Linc know personally that they knew he is a good kid and were there to support and help him. So we will be calling her tomorrow to talk.
His tics subside drastically while at home. We still had cursing today but down dramatically. He also took time to come sit out by the fire in the evening. He was quite chatty and his vocal tic mostly consisted of saying contradictory things. Things like, "This sucks, just kidding, this is great." The negative things he says bother him so much he feels he needs to say the positive right after.
His facial tics weren't all day long today. More off and on and just at the beginning of the week his mouth/nose/eye tic was so constant he would stop talking to get through it. Today I just noticed them here and there but they didn't interfere with whatever he was doing.
I didn't see him look at his fingers once, neither did his sister or dad.
He was also more positive throughout the day.
I did call the school and spoke with the assistant principal. I laid a lot of information on her. Since I had never brought the NF to their attention letting them know about that and the TS was a lot and she was awesome about it. She gave me her cell phone number and said she wanted to let Linc know personally that they knew he is a good kid and were there to support and help him. So we will be calling her tomorrow to talk.
Friday, September 1, 2017
Day 2 on meds - Thursday
Linc woke up happy he was going to school to meet his teacher today.
I went to work and came home to find him asleep. When I went to wake him he had no desire to go to school. He did eventually get up and get excited about going to school.
Any obscenities uttered while at school he did quietly with his hand in front of his mouth. None of them was loud yelling which he was very happy about.
Upon leaving he asked if I would tell his teacher and the class so no one got mad at him. He told me he worried about people judging him.
Still not looking at his fingers any more but facial tics are happening.
He has a preocupation about dying. Is very upset I would want him to live longer than me because then I couldn't come to his funeral so who would be there? Hates the tics so much. Actually said, "I should just get it over with and die now. Then no more tics and you could come to my funeral." We talked about living each day to the fullest and that because death is something that happens at some time while you are alive you get to live life to the fullest and that is why you appreciate it so much. He agreed that was a good thing to do.
I went to work and came home to find him asleep. When I went to wake him he had no desire to go to school. He did eventually get up and get excited about going to school.
Any obscenities uttered while at school he did quietly with his hand in front of his mouth. None of them was loud yelling which he was very happy about.
Upon leaving he asked if I would tell his teacher and the class so no one got mad at him. He told me he worried about people judging him.
Still not looking at his fingers any more but facial tics are happening.
He has a preocupation about dying. Is very upset I would want him to live longer than me because then I couldn't come to his funeral so who would be there? Hates the tics so much. Actually said, "I should just get it over with and die now. Then no more tics and you could come to my funeral." We talked about living each day to the fullest and that because death is something that happens at some time while you are alive you get to live life to the fullest and that is why you appreciate it so much. He agreed that was a good thing to do.
Thursday, August 31, 2017
Day 1 on meds - Wednesday
Linc woke up happy and in a good mood. I was a little worried he would notice me watching him like a hawk so it is a good thing I had work.
He had a tic where he stuck out two fingers on each hand, held them in front of his face and looked at them over and over again. I noticed in the morning he wasn't doing it. When I got home his dad said he hadn't seen him do it once during the day and his sister agreed. Tonight I didn't notice him doing it either.
His facial tics, moving his mouth and looking to the side are still there. And the cursing is still there but not nearly as much as the weeks leading to his. I am sure much of that only has to do with the idea of the medicine. He is happy he is getting help so he is less stressed about it. Alas we shall see.
He had a tic where he stuck out two fingers on each hand, held them in front of his face and looked at them over and over again. I noticed in the morning he wasn't doing it. When I got home his dad said he hadn't seen him do it once during the day and his sister agreed. Tonight I didn't notice him doing it either.
His facial tics, moving his mouth and looking to the side are still there. And the cursing is still there but not nearly as much as the weeks leading to his. I am sure much of that only has to do with the idea of the medicine. He is happy he is getting help so he is less stressed about it. Alas we shall see.
Wednesday, August 30, 2017
Seeing the doctor - Tuesday
Just telling Linc we were seeing the doctor helped his tics slow down. He has had them for almost 2 years now but he dealt with them and it derail his day at all. But using words he knew an 8 year old shouldn't be using sent him down a spiral. The more he said them the more upset he got the more he said them. I was happy we were seeing the neurologist.
Our appointment went great even if Linc had trouble focusing and doing all he was supposed to. Observing his actions helped me see I made the right choice in seeking help.
They put him on Intuniv and told us it wasn't a drug that would produce immediate results. It would take 4 to 6 weeks to decide if it wasn't working but that we would start with a small dose and in a week or two bring it up a bit depending on how he was doing.
Linc left so happy there was something to try. He wasn't scared to swallow his first pill and wanted to go to the pharmacy on the way home.
He took the first one at 7 PM and set the Amazon Echo to ring an alarm every night at 7 PM so we wouldn't forget.
I am hopeful this brings some peace to my sweet child's tired brain.
Our appointment went great even if Linc had trouble focusing and doing all he was supposed to. Observing his actions helped me see I made the right choice in seeking help.
They put him on Intuniv and told us it wasn't a drug that would produce immediate results. It would take 4 to 6 weeks to decide if it wasn't working but that we would start with a small dose and in a week or two bring it up a bit depending on how he was doing.
Linc left so happy there was something to try. He wasn't scared to swallow his first pill and wanted to go to the pharmacy on the way home.
He took the first one at 7 PM and set the Amazon Echo to ring an alarm every night at 7 PM so we wouldn't forget.
I am hopeful this brings some peace to my sweet child's tired brain.
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