Wow. This word holds so much more meaning to me now than just a few months ago. According to Dictionary.com it means “the act of pleading for, supporting, or recommending.” Sounds pretty straight forward to me, but for a special needs child it could mean the difference between getting an education or not.
I’m very thankful that my son goes to a school district that embraces special needs children. They’re not perfect but they try damn hard to get kids what they need. The problem that most people have with getting their children help is that there is so much stuff to shift through. It’s very confusing to navigate if you don’t have the knowledge. And let’s face it, most of us don’t. I knew the bare minimum while Jake was in grade school and I thought it was enough. I was wrong.
I have the distinct pleasure of having a good friend who is an advocate for our state. She went to training and has the personal experience to help parents and children navigate the very confusing world of special education. Without her I would have been lost this year. Jr. high has thankfully turned out to be a lot easier for Jake in most ways. He thrives not only on the constant physical motion of his day but also on the mental motion. Academically he’s doing wonderfully. But those darned special needs keep coming back to bite us in the butt.
If you’re child has special needs and you aren’t getting the help you need for them then find someone who will help you. Don’t be afraid. There is a ton of help out there you just have to know where to look for it. You’re state website department of health should have links to get you on the right track. Or simply typing the word special needs advocate into a search engine should start you off too. What it boils down to is don’t stop looking and don’t stop asking for help until you get results. Sometimes it takes a lawyer, but I hope that it doesn’t come to that for most of you.
I hate asking for help but I’m getting better at it. Trust yourself enough to know that you can do what you need to do for your child. For some people it’s easy for others, like me, it’s a struggle. Don’t be afraid to get the answers you need for your child. Don’t be afraid to lean on others to help you with your struggles. It’s part of what makes us human beings and helps us be better people.
Here's some sites that might be of help to you. Your state should have it's own department or some non-profit groups that can help you as well.
http://www.copaa.org/
http://specialeducationadvocacy.org/default.aspx
http://www.ed-center.com/special_education_advocate
Thursday, February 23, 2012
Growing together...
Watching my son grow through the years has taught me a lot about myself. We’ve always had special needs in our life but the last few years have been more like a rollercoaster going off the tracks than a leisurely ride through the park. I always knew I was different but growing up I didn’t feel like I could talk to anyone about it. Hell, I didn’t even KNOW what was wrong with me. I just knew I wasn’t like the other kids. Times were different 25 years ago. We didn’t understand anywhere near like we do now about special needs and mental health.
Now, as I watch my son deal with his ADHD and Tourette’s syndrome, it feels like things are starting to come together for me as well. Through dealing with his issues I’m gaining a great understanding about myself and why I am the way I am. My afflictions are what they are. They’re labels. But you don’t have to let them define your life. Yes, I have ADD and depression. I’m pretty sure I have tic disorder and am an Aspie. But I don’t let them rule me most days. I use the knowledge that I gain and make a decision to deal with the issues and try to make things work for me in the best way I know how.
I use that same thought process with my son. I can only imagine how things are inside his head. The daily struggles that he puts up with and the sense of self-worth, that as a teenager, is already in flux. Add the disability and the mental health issues and it’s just a powder keg waiting to explode. Some days it does and the clean up process is hard for both of us mentally, but we do it. Because there is no other alternative than to soldier on. I want my son to lead a productive life and be an asset to society, so I help him the best way I know how. I use my own life experience and tell myself I don’t want him to take 36 years to figure out how he works. What his limitations are. I want it to be easier for him. Isn’t that what all parents want? We want better for our kids.
Maybe it’s easier for me to be understanding since I am kind of coming from the same place. I know a little bit how he feels and that does make it easier to be sympathetic to his plight. I don’t like to be an enabler though. They are not an excuse. They are merely a roadblock that you have to find a way around and to overcome. Some are easier than others and you have to lean on friends and family with others. It’s a constantly evolving process that keeps you on your toes and when you don’t like change…well it can piss you off sometimes. But in the end, I don’t have a choice. I have to do it for him.
I never thought that being a parent would be this hard or this rewarding. When you’re a kid you don’t think about all the bad things you have to go through. Everything is sunshine and roses. When you’re an adult you find that some days are cloudy and sometimes your rosebush might have a few bugs. It’s learning to adapt to those nuisances and finding the rainbow despite them that makes everything worthwhile. Sometimes, we have to make our own sunshine and roses.
Now, as I watch my son deal with his ADHD and Tourette’s syndrome, it feels like things are starting to come together for me as well. Through dealing with his issues I’m gaining a great understanding about myself and why I am the way I am. My afflictions are what they are. They’re labels. But you don’t have to let them define your life. Yes, I have ADD and depression. I’m pretty sure I have tic disorder and am an Aspie. But I don’t let them rule me most days. I use the knowledge that I gain and make a decision to deal with the issues and try to make things work for me in the best way I know how.
I use that same thought process with my son. I can only imagine how things are inside his head. The daily struggles that he puts up with and the sense of self-worth, that as a teenager, is already in flux. Add the disability and the mental health issues and it’s just a powder keg waiting to explode. Some days it does and the clean up process is hard for both of us mentally, but we do it. Because there is no other alternative than to soldier on. I want my son to lead a productive life and be an asset to society, so I help him the best way I know how. I use my own life experience and tell myself I don’t want him to take 36 years to figure out how he works. What his limitations are. I want it to be easier for him. Isn’t that what all parents want? We want better for our kids.
Maybe it’s easier for me to be understanding since I am kind of coming from the same place. I know a little bit how he feels and that does make it easier to be sympathetic to his plight. I don’t like to be an enabler though. They are not an excuse. They are merely a roadblock that you have to find a way around and to overcome. Some are easier than others and you have to lean on friends and family with others. It’s a constantly evolving process that keeps you on your toes and when you don’t like change…well it can piss you off sometimes. But in the end, I don’t have a choice. I have to do it for him.
I never thought that being a parent would be this hard or this rewarding. When you’re a kid you don’t think about all the bad things you have to go through. Everything is sunshine and roses. When you’re an adult you find that some days are cloudy and sometimes your rosebush might have a few bugs. It’s learning to adapt to those nuisances and finding the rainbow despite them that makes everything worthwhile. Sometimes, we have to make our own sunshine and roses.
Revelations....
I know it's been a while and I apologize if there is anyone out there still reading. The last two years have been really hard on Jake and I and when I find life difficult I don't tend to write as much. The urge hit me today on the way home so I'll post that too.
I lost my job in July of 2010 and trying to figure out where to go from there has been a difficult process. I finally realized I needed to start new so I started back to school this year. It's actually been kind of fun and I find that I'm much better at it this time around.
Lots has been going on with Jake. We've had to deal with a few extreme things that I wont' get into on here because of their personal nature but I think it's made us even more of a united front. I've learned that sometimes you need other people to help carry the burden and that doesn't mean you're a failure. It means you're human. I'm very thankful for the friends that I have chosen and how much they have selflessly helped me.
I promise to try and update more and not wait until the urge hits next time.
I lost my job in July of 2010 and trying to figure out where to go from there has been a difficult process. I finally realized I needed to start new so I started back to school this year. It's actually been kind of fun and I find that I'm much better at it this time around.
Lots has been going on with Jake. We've had to deal with a few extreme things that I wont' get into on here because of their personal nature but I think it's made us even more of a united front. I've learned that sometimes you need other people to help carry the burden and that doesn't mean you're a failure. It means you're human. I'm very thankful for the friends that I have chosen and how much they have selflessly helped me.
I promise to try and update more and not wait until the urge hits next time.
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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