High school? We can do this, right?

Well...we survived the first semester of high school. It wasn't a cake walk but it definitely wasn't as bad as I thought it would be. Jake adapted rather easily and found his safe places and people quickly. That was what I was most worried about. Before he had always had the nurse to go to or the principal in middle school. High school is so different and I thought it would be a struggle for him. It was, just not in the way I thought. He liked most of his teachers and classes and after some organizational issues were dealt with he settled in nicely. We did have a problem with one teacher and it was unfortunate because it was the one class Jake was looking forward to. Shop. From the beginning of this class Jake struggled, mainly with the multitude of worksheets that were thrown at the students within the first two months. By October the class average was in the 60% range and Jake was failing. Not because he didn't know the material but because of the shear volume he was receiving. Worksheets are his bane to begin with but this was crazy. I attempted to find a happy medium with the teacher but he seemed to not want to work with me. I then went to Jake's caseworker and asked her to help me communicate our needs to the teacher and still did not get what I wanted. I wanted to be able to say if Jake needed extra time to complete a worksheet and I wanted the teacher to email me updates about Jake every Friday so that I could check for understanding and get back with the teacher. I ended being the one who had to email the teacher every week and I finally just gave up. Why? Because at this point the worksheets were no more and Jake was doing hands on stuff and getting an A for those items. Jake and I talked about it seriously a few times and finally decided that this class and the teacher in particular were not for us. So I asked his caseworker to pull him from the class for the second semester. It wasn't worth Jake's GPA or self esteem to keep him in a class where he was not going to be successful. He did well in his other classes, even setting the curve for Earth Science in his grade. He is active in two clubs, Science/Weather Club and Robotics Club and is starting his A+ tutoring this semester at the elementary school. He has an English teacher he adores and is interested in the subject for the first time in forever! He has also found his safe places and teachers and I couldn't be happier. I've been very proud of him stepping outside his comfort zone and starting to advocate for himself this year with his teachers. I know he will still struggle with it, probably his whole life, but it's a step in the right direction. We did decide to have him take gym during the summer since the classes are so big. There's less chance of him having issues with the other students (his buttons are very easy to push) and it's a shorter time period. He's just excited that he will have more time to take electives during the school year because of it. I'm so glad he loves school and learning because if he didn't this would be much harder on both of us. Jake continues to go to therapy but not as often as he used to. He just needs that word vomit time but as he finds more outlets to do so he needs a professional less and less. He also is seeing a specialist for Tourette's who is helping him deal with his disability with medicine and other suggestions. The medicine is tricky because Jake doesn't like to take pills but knows he needs something so it's a work in progress. I am looking forward to second semester and seeing how he grows and adjusts to some new classes and opportunities but I know he will do well and kick butt at the same time!

High school? Ugh....

Barring any unforeseen circumstances, Jake should graduate 8th grade this year. That means next year we start all over again. New building, new teachers and new unknowns. Thankfully Jake will know the freshman principal since it's the same principal he has now. That is small comfort though for the uncertainty we will face until school starts next year. They don't choose case workers until after school is out so Jake won't know who his is until school starts. I put in a request to have his chosen early but they told me it wasn't possible. It just wasn't a fight I wanted to engage in at that particular time. He doesn't really know many teachers at the high school but he does know some of the upperclassmen so I'm hoping that between them and his friends he will be able to make it through the first month relatively unscathed. We had his IEP a couple months ago to go over his issues and pick his elective classes. It went much differently than I thought that it would. Thankfully his current caseworker is well aware of his issues and made a point to emphasize them multiple times. She invited one of the nurses since that is usually a point of contact with Jake and told them he would be in to visit and they needed to expect the word vomit. There is nothing required on their part. Just let him vomit what he needs to say and send him back to class. I'm hoping they will be receptive to this. I think that once he gets to know some of the teachers, especially the science teachers, he will have a place to go when he needs to unload in case the nurse's office doesn't work. He's already eyeing some of the science clubs and I know two of the teachers and the head of the department so that might help. We also decided to have him take gym during the summer. He was not happy at first until we explained our reasoning. Gym class is high school is huge. Like 50-60 kids huge. If Jake took a gym class during the year there's a good chance there will be some students in there he doesn't mesh with. That is a recipe for disaster because Jake lets people push his buttons. But if he takes it during the summer, it's only for four weeks, Monday - Thursday, and he's done. Four weeks, half credit. Then he can take more classes during the school year too that he's interested in and get extra credits so he doesn't have to break his neck during senior year. Win win as far as I'm concerned. I'm worried about some of the teachers he might get as well. Jake has a standing order on his IEP to be able to leave class if he feels like he's going to explode. We've never had a problem with this item since Jake usually goes where he needs to (nurse), gets done what he needs done and goes back to class. I have heard that in high school, some of the teachers aren't as receptive to this need. Momma bear is probably going to rear her ugly head at some point during next year because I know Jake's rights. It's on the IEP, they have to do it. His case worker might also be an issue. I don't know any of them down in the high school but I'm really hoping he gets a good one. I try not to worry too much because I tend to borrow worry and it's not good for me. My goal is to make sure I do everything I can for Jake before school starts and make sure he knows where he can go if there's a problem. We have four years to tune his self-advocacy skills so that he's prepared to go to college. I'm confident that we will accomplish it and not let any of the bumps along the way derail us.

Advocacy

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

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.

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.

Chewie?!

Chewbacca moved in overnight. I find it funny right now. I'm sure I won't in a week.

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