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.

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