Having a Village – I’m recruiting

I have become firmly addicted to facebook lately; it’s been my social outlet, so my motivation for blogging has really declined, BUT. I have been thinking a lot about how we use these social networking sites online to compensate for our isolation. One thing that a lot of parents of special needs children have in common is isolation. It’s so challenging to find a place you can safely take your children, and where they will be enthusiastically included. Social excursions are so trying. A big effort I made this summer was to get my big aspie boy some social skills training so that he might navigate the world with a little more ease. A while back I was discussing how he had been excluded from the youth group at our church, and it has stuck in my crawl so badly that this summer, I took him back to the church and insisted that they include him. They weren’t interested in learning about asperger’s or what kind of accommodations he might need (apparently saving the souls of the least of these is not very high on the agenda of many churches), but by god I forced him on them. And I’m still doing it.

But it’s not just the church; far from it. We are often excluded by our own families who would rather pretend there is no problem than make the effort to learn about what they could do to help, or at the least include their own kin who might have a challenge or two. Most often I have been scolded for poor discipline, but this is not an uncommon occurrence among families who have children whose symptoms present behaviorally. Hell, it’s not uncommon among families who have kids with purely physical disabilities.

Truthfully, many families have issues even when all members are neuro typical, and when mental challenges run rampant, forget about it. You can have all the love in the world, but where ignorance reigns supreme, well, dysfunction is the order of the day. As my grandmother deteriorated in the last years of her life, several of her relatives lived with her, including my own mother at times, and took a tag team approach to caring for her. She was most afraid of losing her mental faculties, and becoming a burden on her children, and both those things happened. The relatives that didn’t live with her often criticized the relatives who did live with her as taking advantage, but the truth was, she was difficult. She became unable to make decisions concerning the maintenance of the house, and no one wanted to override her, not the people who lived within or the ones who lived without. As a result, the house fell almost to ruins by the time she died, and no one wanted it. In order to sell it after she died, the land had to be separated from the house, because no one wanted that money pit.

My grandmother's house is up the road from where I'm living now, and it KILLS ME that someone outside of our family bought it after she died b/c the relatives couldn't get their act together and come to an agreement about it. My grandparents had it built, they bought the land first, and my grandfather was a farmer who did a lot with his own two hands. He's been gone over twenty five years, but she was with us until 2005. It has SO MANY positive memories for so many, because there are over thirty acres of woods with it. She loved bird watching, and above all else, many of us wanted to honor her memory by preserving that woods. God willing, that will happen, but nobody can say for sure. Like they WOULD HAVE BEEN ABLE TO if one of us kept it. I LIVE HERE because I moved back to be near to her in her last years of life, and now I have to drive by it and see SOMEONE ELSE living in it. I would have been happy if ANY member of my family had it, and I would have loved to have had it myself, and fill it up with adopted special needs kids. But no way could I have afforded to restore it without help. Thank god it's a pumpkin patch now so that for as long as that business survives, we can at least go and visit it every year.

My grandmother has been gone now for almost five years, and there is still bad blood between the relatives because of this. The way they fought stupidly over stuff in the attic that nobody cared about for thirty years was just devastating. We all LOVED each other. Why did they make each other feel bad about some stupid trunks of moth eaten blankets in the attic for chrissakes? The PROPERTY, the land, the bird preserve is what MATTERED. There were several people who might have wanted it. We just couldn't come together and agree that we should all help one of us buy it, nobody could agree who was responsible enough to keep it up. Very ugly words were exchanged. So now, NOBODY has it. Great solution. And people are still very hurt about it. We couldn’t even manage to be a village for each other.

Oof. Once again, I am reminded that getting older does not mean becoming more mature.

But why can’t we do better than this? Why can’t we see that we all need a village? Why at least can’t extended families be a village for each other? How do we not see that the world is better for everybody when we take care of our families, and our neighbors, and our communities, and even people in deep need in other, far away places. Like New Orleans. Or tsunami victims in Sri Lanka. But we don’t even do it for people who are related to us. We are much too disconnected. I think not everyone is cut out to be a parent, and nor should they feel like they have to. There is a tremendous societal pressure for EVERYONE to procreate, though we clearly already don't have enough resources for the kids of the present and future anyway. I was compelled to adopt at an early age, and by god, I wish I'd followed that instinct. There are plenty of kids out there who feel unwanted. Godwilling, I will regain my health and go down that road again someday.

Do you know on a survey (this is going back over ten years now, but it made the news, big and scientific, very respectable with a huge amount of responders) the number one thing that people WOULD NOT do if they had to do it over, was have children? It is hard enough in this world to have children when you REALLY REALLY want them AND have a very committed partner in doing so. I don't care what your politics are, it takes parents AND a village to raise a child. And we need more people who are willing to be the village, and less parents who carelessly make children. You childless by choice people out there? NEVER apologize for not breeding, the only regret is not doing something you REALLY wanted to do. Or the long ass list of things I want to do when the kids are older which is rapidly becoming shorter because of my health. So. While I'm waiting to get more kids, I'm trying to be a better village.

Can you tell I could rant on that subject for hours? Some of it is because I have custody of someone else's child whose parents were judged terribly, and then given no help. And now, I have my own special needs kids (both my boys are mildly autistic, but mercifully high functioning), and I have been in the same spot. Everyone wants to judge, few want to put their money where their mouths are. We have VERY expensive private medical insurance, with HUGE copays, and the service we get is for CRAP. My dad used to get on his soapbox about how wonderful HMO's were, until it almost cost him his life. It certainly cut into the quality of his remaining time. I suspect he had other plans for his retirement years. Having kids is an enormous risk, even if you are the most responsible person on the planet. Just taking care of yourself, even if you do everything right, can be wildly expensive. I can't believe the amount of money I am going to put in my mouth even though I have always kept my teeth clean. No escaping genetics.

Who’s to say who is responsible enough to have children anyway? Life isn't fair sometimes. Just hanging on to the most basic of resources, a home, is tricky.Weather happens, the market changes, property taxes become RIDICULOUS, Wallstreet executives get away with criminal behavior and everyone loses their retirement money. There are no guarantees.

I always say that friends are family that you get to choose for yourself, and very often, they make up for the family that you got stuck with. Thank god for them. My best friend is a girl who was in my house the night my mom went into labor with me, so you could say we go way back. Her kids will come to me if she dies, her husband is gone and probably none of the plenty family she has on both sides will want to deal with it. Funny, we don't have that much in common either, but it's the time you spend that matters. We don't like the same music, tv shows, movies, or have the same hobbies, career interests, are opposites in our choices of men. She smokes, I am horribly allergic. The list is long. But when I gave birth to my first child in L.A. and she was just graduating from her masters in Philly, she packed up everything she owned, dragged her unwilling boyfriend, drove across country with a freaking uhaul, and came and lived near me for two and a half years in expensive L.A. county with no job prospects, just faith in me. And that birth/recovery (long, long recovery) almost killed me, I can't tell you how precious it was to have her living nearby during that time.

And when she gave birth to her twins prematurely seven years later, I packed my bags and my kid, left my husband and our very first newly purchased HOUSE (you know what a big deal that is in L.A.) and moved in with her across the country while she needed me. We lost the house, ultimately, because of that choice (and because of 9-11), but I wouldn't trade.

That's what family SHOULD be, but so often isn't. So if we’re lucky, we just choose it for ourselves, and are glad that we found it. I haven’t seen my best friend for a year, even though we live just an hour apart now, but I could pick up the phone, ask her for help, and she’d be right there. If she could get a sitter! And I wish I could say that I had a lot more friends like that, but truthfully, I don’t have the time to develop those relationships now. My mother is seventy years old, with diabetes and schizophrenia, and I am terrified at the thought of losing her, because she is my mother, and also because she has been our lifeline. I have even considered moving back to L.A., because we have five rapidly aging parents there too, and they will probably need us soon. In the meantime, we have needed their help too. But we need a bigger village, now more than ever. And in order to develop those relationships, we need to be able to go where our children are welcome and included. And if I wasn’t so tired, I would create that place if needed to. But for now, we are still dependent on the kindness of strangers who aren’t as tired. So if you aren’t already, please, consider becoming part of a village, or even creating it.

Talking to a friend

It's been awhile since I last talked to my friend Micah; he lives all the way in California. I called him for the first time in a long time, probably months. I grew up with him before I moved to Pennsylvania, he's an aspie like me. It's a miracle that we both met because I didn't think I would meet someone who was very much like me, now that I reflect on it. Back then all I was thinking was that I have a friend who has the same interests I do. We kinda still do now. We both like art, video games and really good movies. He likes action movies more, but I prefer horror thrillers usually.

I was happy to be able to talk to him again, it was good to hear from him. I rarely get to see my friends nowadays, most of them have moved away or I moved away from them.

Some of my friends just moved back here, close by, even though they aren't right next door anymore. I am really happy to see them. I will call them the R family, the mother, father, Amanda, Angel and Michael. Their whole family was friends with my whole family and I'm really glad they're back. Michael is friends with my little brother D and he is really happy that they're back. Amanda is a couple years older than me and Angel is a couple years younger, but they are two of the greatest friends I've ever had. So is Micah, but I don't get to see him anymore. But I consider them all my best friends.

So I'm starting to get back in touch with all my friends again. It's making me very happy. I was really sad when they were gone, the girls especially were the last good ones I had that lived close. Now that they are back, things are going great. I was pretty depressed having all my friends gone, but I'm especially appreciative that they are back.

It's kind of hard for me to make friends because I'm a little bit shy. My mom would not let me go out by myself, and I don't like to do it anyway because the world is not a safe place. I am probably more at risk than regular people because I don't know how to look out for myself. I don't know how to do things like normal people do. I think I'm abnormal a bit. With strangers, I tend to be very formal, I try to be a like an adult. But sometimes I feel like a little kid. I don't know the in between. I feel a little bit weird, but I usually feel happy about who I am. I think I just get depressed because I think there is a lot of grumpiness around me and I don't get to see my friends enough.

I would rather not go to school because I think it is a hell hole. You take a bunch of random people and coop them up in a building for seven hours and that is a set up for something bad to happen. Some schools are ok because they can be different from normal traditional public schools. Any one who has been at one of those regular schools or knows someone who is has heard of something bad happening at a school. A good school would be where the employees are nice and really cares about the kids, so that if one of the kids misbehaves or hurts one of the other kids, then proper measures are taken. And no harsh punishments for little kids. I think aspies would really suffer because they don't understand the rules and they would get in trouble a lot. I think aspies should have a special school just for them where the adults are specially trained to understand them.

Right now I'm schooled at home and that's the way I like it, but I would like a chance to make friends with other people, especially people like me. When there are a lot of people around me, I feel kind of anxious. I was a vacation bible school last week, which was ok because it was just one week for a couple of hours per day, and there was only a small group of teenage boys who were very nice. I think they were taught to be nice because they go to that church a lot. Some of the kids in the other classes were strangers to the church who just came for the food and the games, and they were more wild. I don't like it when groups of kids act wild and misbehave. When all the classes mixed together, I just stayed near my friends Amanda and Angel and then I was ok.

blogging at gunpoint

I was home schooled until fifth grade when I started a cyber charter. I got sick all the time when I was little, so my mom decided to take me out of regular school. Plus she had started to suspect that I would have a hard time in regular school, what with having to sit at a desk and all, and follow rules, and try to learn things by intuition. So when I was 12, she had me tested at the cyber school and they said I should be in seventh grade instead. They decided on sixth. I didn't care, I had no idea what it meant to be in a certain grade. It was hard, since I still couldn't write. I don't just mean I didn't know how to compose, I mean I had a hard time taking a pen and physically making the letters. I am left handed, but so what. I really don't know why, I would draw constantly all day long. I still have a hard time writing, but I can really use a keyboard.

I liked the cyber school when I could do it, but I hated it when I couldn't do it. Some stuff was easy and some stuff was hard. It was really different from home schooling. IF I had the choice to go back to home schooling, I would. But now I have to think about what I need for college; for some reason though I have no desire to go to a regular school with a regular classroom, I have always believed that I should go to college.

After a few months at the cyber school, there was a health class resource called Brainpop that I used all the time, even just for fun. I was reading about symptoms of a thing called autism, and I thought, wow that sounds like me. And that sounds like me. And that sounds like me. Me me me. In fact, I thought, why don't they have my picture in there? So I asked my mom if she had ever heard of autism, and she started laughing. That's how I found out I was autistic. I guess she didn't think there was any reason to tell me, kind of like when you find out that Santa Claus doesn't really exist.

I think it might have been nice if I had known sooner, just so I could understand why I was weird. But I will leave those details for another post. I don't really like blogging. I don't even like myspace, or email, even though I am a teenager. But I'm supposed to do this as therapy, because I avoid communicating with people. Bah humbug. But I love the internet. I like youtube the most. I will make my own videos someday, and then maybe I can stop blog writing. That's all for today.