Friday, June 10, 2011
Thursday, June 9, 2011
The Bird is the....Tic?!
Jake's tics seem to last about three weeks on average. Meaning when a tic appears we can be pretty sure it will be phased out within a month. There's obviously no rhyme or reason for this, that's just how it is.
One tic that wants to stay though...well it's a fun one.
And no, I'm not talking about the word BIRD. I'm talking about that lovely digit that sprouts out of the middle of our hand. The one we all love to hate. The dreaded middle finger. When Jake's around, everything gets flipped off. The cats, the computer, the trees. Sometimes even nothing at all.
He's actually pretty good about not doing it in public. I don't know if it's a conscious thing or not but I suspect that he tries to hold it in. Because when we hit the car after being in a store it comes out full force.
There are times when he brings out the big guns too. Curse words. He doesn't say them at school somehow but when he's home, they come pouring out. And I let them. Now you might judge me because of that and I'm really okay with that. I try not to ask my son to be something that he's not. When we are in the privacy of our own home or the car, as long as he's respectful I let it go. Because I know he isn't saying it to be rude or mean.
Even when he slips in public, I just ignore it and move on. To point it out or say something will just compel him to do it more. I know people see and I'm sure they're thinking horrible things about it. But I find that the further we go into this adventure, the less I seem to care what others think.
I always try to remind people to think about what Jake goes through. He can only escape his tics when he sleeps. And unfortunately for him, he doesn't require a lot of sleep. =) For a lot of people this puts things into perspective. For those that don't get it...well they just don't get it. And that's unfortunate for them.
"Be who you are and say what you feel. Because those who mind don't matter. And those who matter, don't mind." - Theodor Seuss Geisel
One tic that wants to stay though...well it's a fun one.
And no, I'm not talking about the word BIRD. I'm talking about that lovely digit that sprouts out of the middle of our hand. The one we all love to hate. The dreaded middle finger. When Jake's around, everything gets flipped off. The cats, the computer, the trees. Sometimes even nothing at all.
He's actually pretty good about not doing it in public. I don't know if it's a conscious thing or not but I suspect that he tries to hold it in. Because when we hit the car after being in a store it comes out full force.
There are times when he brings out the big guns too. Curse words. He doesn't say them at school somehow but when he's home, they come pouring out. And I let them. Now you might judge me because of that and I'm really okay with that. I try not to ask my son to be something that he's not. When we are in the privacy of our own home or the car, as long as he's respectful I let it go. Because I know he isn't saying it to be rude or mean.
Even when he slips in public, I just ignore it and move on. To point it out or say something will just compel him to do it more. I know people see and I'm sure they're thinking horrible things about it. But I find that the further we go into this adventure, the less I seem to care what others think.
I always try to remind people to think about what Jake goes through. He can only escape his tics when he sleeps. And unfortunately for him, he doesn't require a lot of sleep. =) For a lot of people this puts things into perspective. For those that don't get it...well they just don't get it. And that's unfortunate for them.
"Be who you are and say what you feel. Because those who mind don't matter. And those who matter, don't mind." - Theodor Seuss Geisel
Saturday, June 4, 2011
Summertime, and the living is...crazy as usual!
Summer.
Pools, BBQ's, vacations.
Insane heat, cicadas and pterodactyls that stick around way too long. lol (The latest tic)
I'm not a fan of summer. Besides the fact that it's ungodly hot in the Midwest United States there's no schedule.
What most people love about summer I can't stand. It seems that during the school year Jake and I cope well with most things because there is a set schedule. Predictability in the everyday is usually a comfort when you aren't able to control anything else.
It's one reason I make Jake go to summer school. Yeah, it's only four weeks long and four days a week but it makes the summer so much easier to bear. He's entertained mentally and this makes the melt downs and tics easier to bear. Once that's over though...ugh.
Jake graduated 6th grade last month and now it's on to middle school. He's actually very excited about it but a little apprehensive at the same time. Excited because he'll be able to move around more during the day and meet new people.
Apprehensive because he has half a 7th grade class to introduce to his best friend. =\ He's been so lucky that his friends have grown up with his tics so they just know that they are part of him. It's just Jake. Adding new students to the mix will be...interesting for lack of a better word.
He's already had a small taste of what's to come. During the school year there was a lock-in at the middle school. It was comprised of the 7th and 8th graders and the 6th graders were invited so they could familiarize themselves with the school. Jake was beyond excited! It was one big social for him! lol
On the whole he had a good time. But a few days after he told me about an incident. He was walking down the hall to get to another part of the building and he was alone. There were a few 8th graders walking towards him and when they passed by one hit him in the arm. Enough to leave a bruise. These same kids had given him problems about his tics earlier. Because, of course, they were prevalent since he was so excited.
Much to my dismay Jake didn't tell anyone. As any parent knows it's hard to sit back and let your kid deal with stuff like this. You want to protect them from it but you can't. It's social suicide if you do and they'll never learn how to deal on their own. I try to make it clear to Jake often that he needs to be his own advocate. I'm not afraid to step in if I have to but I want him to learn how to do it himself.
Another incident happened this week on the first day of summer school. There were a couple of kids in one of his classes that were giving him problems. He told them he couldn't help it but they brushed him off. Thankfully, they didn't give him problems the next day but I stressed that if it happened again he needed to say something to the teacher or the principal.
As I stated before, kids are forgivable for their ignorance. They sometimes just don't know because they don't have the life experiences. That's why I was so thrilled that Jake did his presentation so much before the school year was over. I was so proud when I would hear how well he did and how he handled himself in front of the classes. He even had a few teachers that requested him to come into their room. He has already talked about going back next year and getting the teachers he missed.
I know that you can't expect everyone to understand, even if they are given the information. It's just the way of things. It's comforting though to see Jake become a little more confident every day. A little less concerned with how people see him. I love seeing glimpses of the great person that I know someday he will become.
So, we will endeavor to make it through the summer yet again. July and August will be long but I'm hoping we can fill them with enough things to do and it won't be quite as painful as it usually is. We are lucky to have so many free things to do around St. Louis and that will make things infinitely easier.
Pools, BBQ's, vacations.
Insane heat, cicadas and pterodactyls that stick around way too long. lol (The latest tic)
I'm not a fan of summer. Besides the fact that it's ungodly hot in the Midwest United States there's no schedule.
What most people love about summer I can't stand. It seems that during the school year Jake and I cope well with most things because there is a set schedule. Predictability in the everyday is usually a comfort when you aren't able to control anything else.
It's one reason I make Jake go to summer school. Yeah, it's only four weeks long and four days a week but it makes the summer so much easier to bear. He's entertained mentally and this makes the melt downs and tics easier to bear. Once that's over though...ugh.
Jake graduated 6th grade last month and now it's on to middle school. He's actually very excited about it but a little apprehensive at the same time. Excited because he'll be able to move around more during the day and meet new people.
Apprehensive because he has half a 7th grade class to introduce to his best friend. =\ He's been so lucky that his friends have grown up with his tics so they just know that they are part of him. It's just Jake. Adding new students to the mix will be...interesting for lack of a better word.
He's already had a small taste of what's to come. During the school year there was a lock-in at the middle school. It was comprised of the 7th and 8th graders and the 6th graders were invited so they could familiarize themselves with the school. Jake was beyond excited! It was one big social for him! lol
On the whole he had a good time. But a few days after he told me about an incident. He was walking down the hall to get to another part of the building and he was alone. There were a few 8th graders walking towards him and when they passed by one hit him in the arm. Enough to leave a bruise. These same kids had given him problems about his tics earlier. Because, of course, they were prevalent since he was so excited.
Much to my dismay Jake didn't tell anyone. As any parent knows it's hard to sit back and let your kid deal with stuff like this. You want to protect them from it but you can't. It's social suicide if you do and they'll never learn how to deal on their own. I try to make it clear to Jake often that he needs to be his own advocate. I'm not afraid to step in if I have to but I want him to learn how to do it himself.
Another incident happened this week on the first day of summer school. There were a couple of kids in one of his classes that were giving him problems. He told them he couldn't help it but they brushed him off. Thankfully, they didn't give him problems the next day but I stressed that if it happened again he needed to say something to the teacher or the principal.
As I stated before, kids are forgivable for their ignorance. They sometimes just don't know because they don't have the life experiences. That's why I was so thrilled that Jake did his presentation so much before the school year was over. I was so proud when I would hear how well he did and how he handled himself in front of the classes. He even had a few teachers that requested him to come into their room. He has already talked about going back next year and getting the teachers he missed.
I know that you can't expect everyone to understand, even if they are given the information. It's just the way of things. It's comforting though to see Jake become a little more confident every day. A little less concerned with how people see him. I love seeing glimpses of the great person that I know someday he will become.
So, we will endeavor to make it through the summer yet again. July and August will be long but I'm hoping we can fill them with enough things to do and it won't be quite as painful as it usually is. We are lucky to have so many free things to do around St. Louis and that will make things infinitely easier.
Thursday, March 3, 2011
Parenting is a hard job....
So things have been going pretty good for Jake since I last posted. We've had some little issues and some meltdowns but nothing that we couldn't handle. Jake has once again taken up the torch of being the voice of Tourette's at his school.
As I said before, Jake is in scouts and he loves it! Unfortunately he's not very good about getting started on stuff so I gave him a nudge as far as his badges went. I picked out a handful that I knew would be relatively easy for him and said 'Here ya go. Now go do something." lol The first badge he chose to work on was Disability Awareness. Easy peasy right?
One of the requirements of the badge was for him to do a presentation on disabilities to a cub scout or other group. I suggested he talk to his counselor at school and see if maybe she could assist him with that since he already had a presentation for Tourette's put together. She was more than happy to help him out and arranged for him to talk to a 3rd grade group of students.
As always, Jake shined in the only way that he can. I was given multiple comments from teachers and the principal and even received a phone call from the counselor telling me how proud she was of Jake. Again his capacity to love brought tears to my eyes. He and the counselor then set out to have him talk to more classes at school. I was so thankful that he was able to do this. He is helping others to not only understand a disability but helping himself communicate and deal with his own disability.
It became especially relevant a month or so ago when I was approached by a teacher that knew Jake and had dealt with him in some after school activities but had never had him in their class. Overnight one of her students has started ticing. She has been familiar with Jake for a good two years at least and she knew about his diagnosis so she approached me for possible suggestions I might have for her student.
I gave her a brief rundown of things I had done for Jake and some things his 4th and 5th grade teachers had used with him. I also gave her a brief overview of the disability itself. Ironically, a couple of days later there was an article in the local paper about a study Washington University was doing about tic disorders. God works in mysterious ways sometimes. =) I mentioned the article to her and she was very interested in the information it included and passed it on to the parent.
Unfortunately the situation is not something that is a good one. I am almost positive this student has Tourette's because I have watched said student and it's like Jake all over again. Suffice it to say this student does not have the support and understanding that Jake does from his family. My heart nearly broke when I realized this.
My son will be a productive and successful adult because he has a support system to rely on. At school he has caring educators and an Individual Education Plan that allows him certain concessions to help him be successful. Of course he also has the Disabilities Act which is a tremendous help should the need arise.
I have never understood parents who don't want to have their child 'labeled' so they choose to ignore the problem. While my son is not my whole life he is the most important thing and I would move heaven and earth to give him the help he needs. When you choose to ignore the issue, you only make the problem worse and make it that much harder to overcome the obstacle your child is faced with. If it is a serious problem and gets in the way of their education and their ability to function you should do something about it. Make noise! Be heard! Do whatever you can to get your child where they need to be.
Every situation is different and I understand that. Some children are borderline or don't have any issues at school and that's great. But why would you hold your child back because you are afraid of what others would think? Because let's be honest. That's the main reason that most people don't want the label. They might be viewed as the source of the problem and heaven forbid someone think they weren't perfect.
I have learned a lot about myself through dealing with Jake's issues. Since 4th grade I felt 'different' but had no way to explain what was going on with me. I didn't have the outlets or understanding that Jake has. Things were different back then and progress is always a great thing. I'm growing along with my son and I'm enjoying every minute of it.
My only wish is for others to experience the same thing and help their kids out when they need it. Kids don't always know how to say things and sometimes they tell their story in other ways. Listen. It's the most important thing you can do for them besides loving them. They just want to be heard and understood.
Listen to the song they are singing....
As I said before, Jake is in scouts and he loves it! Unfortunately he's not very good about getting started on stuff so I gave him a nudge as far as his badges went. I picked out a handful that I knew would be relatively easy for him and said 'Here ya go. Now go do something." lol The first badge he chose to work on was Disability Awareness. Easy peasy right?
One of the requirements of the badge was for him to do a presentation on disabilities to a cub scout or other group. I suggested he talk to his counselor at school and see if maybe she could assist him with that since he already had a presentation for Tourette's put together. She was more than happy to help him out and arranged for him to talk to a 3rd grade group of students.
As always, Jake shined in the only way that he can. I was given multiple comments from teachers and the principal and even received a phone call from the counselor telling me how proud she was of Jake. Again his capacity to love brought tears to my eyes. He and the counselor then set out to have him talk to more classes at school. I was so thankful that he was able to do this. He is helping others to not only understand a disability but helping himself communicate and deal with his own disability.
It became especially relevant a month or so ago when I was approached by a teacher that knew Jake and had dealt with him in some after school activities but had never had him in their class. Overnight one of her students has started ticing. She has been familiar with Jake for a good two years at least and she knew about his diagnosis so she approached me for possible suggestions I might have for her student.
I gave her a brief rundown of things I had done for Jake and some things his 4th and 5th grade teachers had used with him. I also gave her a brief overview of the disability itself. Ironically, a couple of days later there was an article in the local paper about a study Washington University was doing about tic disorders. God works in mysterious ways sometimes. =) I mentioned the article to her and she was very interested in the information it included and passed it on to the parent.
Unfortunately the situation is not something that is a good one. I am almost positive this student has Tourette's because I have watched said student and it's like Jake all over again. Suffice it to say this student does not have the support and understanding that Jake does from his family. My heart nearly broke when I realized this.
My son will be a productive and successful adult because he has a support system to rely on. At school he has caring educators and an Individual Education Plan that allows him certain concessions to help him be successful. Of course he also has the Disabilities Act which is a tremendous help should the need arise.
I have never understood parents who don't want to have their child 'labeled' so they choose to ignore the problem. While my son is not my whole life he is the most important thing and I would move heaven and earth to give him the help he needs. When you choose to ignore the issue, you only make the problem worse and make it that much harder to overcome the obstacle your child is faced with. If it is a serious problem and gets in the way of their education and their ability to function you should do something about it. Make noise! Be heard! Do whatever you can to get your child where they need to be.
Every situation is different and I understand that. Some children are borderline or don't have any issues at school and that's great. But why would you hold your child back because you are afraid of what others would think? Because let's be honest. That's the main reason that most people don't want the label. They might be viewed as the source of the problem and heaven forbid someone think they weren't perfect.
I have learned a lot about myself through dealing with Jake's issues. Since 4th grade I felt 'different' but had no way to explain what was going on with me. I didn't have the outlets or understanding that Jake has. Things were different back then and progress is always a great thing. I'm growing along with my son and I'm enjoying every minute of it.
My only wish is for others to experience the same thing and help their kids out when they need it. Kids don't always know how to say things and sometimes they tell their story in other ways. Listen. It's the most important thing you can do for them besides loving them. They just want to be heard and understood.
Listen to the song they are singing....
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