socializing online when you can't leave the house

I suppose one of the reasons I started this blog was to reach out to others like me in similar situations, a universal desire, I'm certain. We all feel better in the company of others who can relate to whatever we've going through.

Ever since my mini stroke last year, I have made a concerted effort to get out of the house more, even though I feel less like doing it than ever before. But I was so determined to force my kids to socialize more even though the two oldest pushed against it. The truth is they need it, and they benefit from it, despite disabilities that make them fight having human contact, especially NEW human contact. The little one loves to get out and play with others, although he often wants to keep doing whatever he's doing in the moment, so he has also joined the protest movement against leaving the house. Once he's out though, he's usually happy about it.

Anyway, that is all about the kids. My dh hates leaving the house almost more than them. A grown aspie is harder to get into motion that the children, who at the very least will eventually capitulate rather than suffer my wrath. But the dh is practiced in the art of passive aggression; he will often say yes, and then sabotage our ability to actually do something with his behavior. But he needs socialization too, and occasionally I overcome inertia for the both of us, and out we go. Sporadic outings do not build long term relationships however, so he doesn't really have any friends in this fine city/state/region of the country. But everyone who knows him likes him, and my relatives are all very nice to him on the rare occasion that they see him. It's still not enough, but it's better than nothing. What I really want is for us to once and for all pick a church, and build a relationship with it as a family. Heck, I would even settle for all five of us choosing a different church each and rotating. You can still build relationships that way.

But I need something more for myself. My best friend is over an hours drive away, I'm lucky if I get to see her three times a year. We are both consumed with family drama that makes it difficult. Most of the rest of our good friends are in Los Angeles. The disability level in our household has really escalated since we've been here near Philly, which has made building new relationships very difficult. I try to keep in touch with some of our friends and family online, but it's been a struggle. But at least I have that option in this day and age. I've made some new friends online, and even met some of them in person.

We found a new church through web surfing a few years ago, and I was excited when I found out that there was an online community active in the church in addition to their relatively local physical building. As it turned out, other members of my family had a history with this church that I was completely unaware of, but it made me feel that my prayers to find the right church for us had been answered. I knew that it was likely that dd would have a hard time with any regular church attendance, and though some of the people there were absolutely outstanding as far as fellowship opportunities were concerned, sure enough, she eventually pulled back. Our attendance since 2005 has mostly consisted of participating in their yearly halloween alternative celebration, but I still like the congregation as a whole. I figured we could always participate in their online forums as well, but alas, the webmasters apparently have new responsibilities that have put maintaining the website a bare minumum priority.

Well I was pleasantly surprised this year to find out that several of my favorite people from the church have started blogs which have become my favorite new nightly reading time. I really enjoy this fellowship, though I'd love more of the in person variety. But I find as much entertainment value in blogs as I do with novels. Don't get me wrong, I still read voraciously from the local libraries, but now the spare hour or two I get to myself after everyone else is in bed is often devoted to blog reading. I also have found great comfort in several blogs of autism parents and some individuals with autism.

I was reminded recently by a friend whose wife has a rather high degree of physical disability that one needs to be creative with social pursuits and hobbies in those situations. They are both addicted to Warcraft, which is an online role playing game that is very popular though it bores me to tears. But his principle is correct; social outlets are so important that you take them however you can, and we are lucky to have such opportunities in our present circumstances.

Last year I began a love affair with myspace that started as a chance to share a bit of our lives here with family and friends far away, and expanded into something so much more. My enthusiasm waned a bit as site content is not monitored nearly as much as I would like when it comes to a program that I encourage my children to use; there is way too much almost-porn on the site for my comfort, but I still get a lot out of it, and I will quote one of my blog entries from myspace from last year:

START
MYSPACE IS FUN. And you get to hang with your peeps when it's convenient for you. Like in the middle of the night when a toddler wakes you, or insomnia gets you, or the freaking dog won't stop barking, or when you have ten hours of work to do while the kids are sleeping and out of your hair. Myspace helps those make those moments much more bearable. So I will still be here on myspace, representing myself a little more personally now, and sharing my minute details when I feel like it.

I've been searching for some friends and family on myspace to see if I can find some people that I miss being out of touch with ... myspace does make it a lot easier to hang out with people online, which is great when you are all the way across the country from most of them. I have to credit my sister in law Hazel for convincing me to give it a thorough test drive.

MOST of the people I added as friends are ones that I know very well, or at least used to. I have added a local musician that I love plus my favorite health food store and a couple people connected to that, but, for the most part, my friends have a very personal connection to me, and I LOVE it. It's been really great finding friends from freaking elementary school, junior high, high school and college. Also some friends from the post college, pre Philadelphia work era. Some of them I found by accident while I was searching for someone else. Very very cool. I have a desire to kind of reconnect with people lately since I turned forty last year, and sort of almost but not really died. Let's just call it a too close for comfort brush by death.

I have kind of been out of the loop since my second son was born, but he's five now and I'm starting to have a little bit of time to think about something else. Mostly that time comes late at night, but all the more reason to myspace. It does seem like a verb to me.

Plus some really great friends of ours moved away last summer, and I miss them so much. I've convinced at least one of them to give it a try. Honestly, myspace is a good chance to build better relationships with ones not only far away who are near and dear or even just on the edge, but also with people right in front of my face or close to it. Lets face it, with my husband's long work hours/ horrendous commute, three kids I'm home schooling, and a couple family members with agoraphobia, plus a definite diabetes fatigue, I just don't get out much. And that isn't likely to change anytime soon. We haven't been to church in over a year. I've been out of the visiting circuit for so long that people far away are coming to see US.

Two years ago, my precious grandmother E died, and her funeral was almost an impromtu family reunion. My maternal grandfather's family has had an annual reunion for ages up near Allentown that came to a halt a few years back when the organizers at that time wisely gave over to their retirement years. My grandmother's funeral was a fortunate event in that it gave some of my cousins who had been knocking around the idea of starting up the reunion again the final motivation they needed to push forward.

In June 2005, the E family reunion was reborn thanks to my cousins K and B who spearheaded the event, and so many other relatives that were eager to contribute to the glorious occasion. We were all so happy to see each other, and it really punctuated for me how much less socializing I have done with my family since moving near to so many of them. Total irony.

The saddest part is that DH and I have sacrificed being near our immediate families to live out here and raise the kids in what we consider to be a friendlier family environment, close to much extended family, and yet we don't make the effort to see them. My mother comes to see US. Almost every week in fact. And while that's great, sadly, that is five other of our children's grandparents in L.A. that they rarely see, who I haven't seen myself in over three years. If I'm 40, they certainly aren't getting younger either. My next big push is to convince the grandparents to open myspace accounts. But I'm loving finding other relatives here now.

This also coincides with what would be my 25th high school reunion next year, if someone from my high school bothers to get one together. I didn't go to the 5th, 10th or 20th, and I have a feeling I may have to wait until 30 comes around. 2008 will also be the 25th year since I matriculated as a freshman at UCLA, and though I met many great people through the 7 years it took me to get a 4 year degree (finally graduating ELSEWHERE), the ones I think about most are four great girls I met (three were dorm mates) that year and didn't keep in touch with past 1990, though I bumped into one at Costco in 1996. Nostalgic? I think so. So far I've found 2 of them here.

Reconnecting with people on myspace in all the categories above has been so awesome, many of them don't have direct accounts, but their kids do! Even if some of the content on the kids' pages just grosses me out. And there are a lot of skanky people on myspace. Lord knows my privacy settings are all very high, and they need to be. But the younger generation has rekindled my hope for building on our relationships and reconnecting with their parents. Hopefully, together, we will get them all hooked I know I'm hooked.
END

I'm still going strong with myspace, I have over a thousand pix loaded there. I've been using email for what seems like an eternity, though I guess it's only been fifteen years plus a little. I was trying to remember the first internet service I had to no avail. I'm also on goodreads since last December. And now I'm starting blogger instead of just reading other users all the time. So I guess I'm embracing the online social movement, even though compared with the average age I'm a dinosaur. Truly, I don't know how I'd live without it now.

God is good and god is great, and so I thank him for the internet.

The toll it takes

I took T to a church group last week that divides the kids into age groups and genders. One thing I can't stand about the traditional public school model is the segregation by age that is so unnatural in the rest of life's venues, and I think, harmful. At the same time I think it's probably necessary for safety reasons in the public schools as there is so little supervision of the kids who often interact in negative ways with each other; if bullying is a problem in same age peer groups, how much worse would it be in a mixed age group? But I totally digress here. Even though I have found a church or two that supports home schooling, and my own most frequented church of choice has a youth group that mixes ages 12-18, if I want T to be able to pick some of his own social activities, those same age, same gender experiences are likely to be a benefit in some ways in an environment where the people in charge don't know him well.

T had a great time at the group, so at least I should be grateful for that. Ironically, when the group leader asked for prayer requests, T asked for them all to pray for his mother, because there is "only one of her, and four of us." I can't even imagine what the leader must have thought of a statement like that, but it cracked me up. But lord knows I appreciate the prayers, especially when I would have expected him to say something like "please pray for me, because I'm starting school again soon, and I hate it. Plus I'm looking for a good new school for someone with asperger's." Well that's certainly something I've been praying about a lot recently.

It's true I need my own prayers though, and I have to learn to ask for it. On more than one occasion in the not too distant past, some people have recommended that I join a caregiver's support group, and even my doctor made some not to subtle comments about how talking to a "counselor" might help with some of the stress that a person who lives with four people with disabilities might feel. Well I am not proud, if I had the money and the time, I love therapy. But the point that I need to take better care of myself especially under these circumstances is well taken. I think it's a mother's universal lament that they are so busy trying to fulfill the needs of all the other family members that they don't have time for themselves or otherwise always put themselves at the bottom of the list. And it's stupid. Because if I had taken better care of myself, I would be a better wife and mother right now.

It's been just over a year since my mini stroke, and I don't really feel like I've made that much progress. I have worked really hard, so it's fairly frustrating. Here's what I wrote on myspace last year around this time:

START:
I have been getting a lot of questions about how my health is going recently. Back in May, I had what some doctors referred to as a possible "mini-stroke" or "TIA." Don't really care what it was called, but it sure was scary. My blood pressure was off the charts, and I didn't realize it until it felt like my head exploded. Anyway, a couple of doctor visits and diagnostic tests later, it turned out that I had very high blood sugar and very high cholesterol to go along with the high blood pressure. I usually get a physical every year, and last year I skipped it. I am pretty particular about not skipping it usually because there is a lot of disease in my genes. But last year was very hard. In fact, the last six years have been a real challenge, and last year was just the icing on the cake of stress. So I had no business skipping my physical, busy or not, and I paid for it, and worse, my family has really paid for it.

The good news is I didn't die. And my heart is in actually pretty good shape. The bad news is that I have type 2 diabetes, but I am absolutely determined to get rid of it. I have radically changed my eating habits (goodbye my favorite cherry coke - sob, sob), and I have been meticulous about eating when I'm supposed to, measuring my sugar levels, and taking appropriate therapeutic measures. I am learning more everyday. And while I've been feeling pretty cruddy, things are definitely looking up.

After three months of treatment, my 30 day sugar average is 139, my 14 day average is 134, and my 7 day average is 131. So the numbers are not only almost normal (normal range is 80 - 120), but they are still going down. Soon I may need no insulin or drugs at all. I keep a close watch on my blood pressure, and I only have to take medication for that on an "as needed" basis, which is almost never. I am doing some gross things (anybody care for the taste of pure apple cider vinegar?) and I keep trying more things. I am eating a lot more fruits and vegetables, and a lot less carbohydrates, especially simple carbohydrates.

So all in all it's pretty good news. And in the not too distant future, I look forward to saying "I used to be a type two diabetic, but not anymore!"
END

Well, my optimism was unfortunately misplaced. Because an average of my morning fasting and post prandial (two hours after eating) blood sugars ranges widely from 130 up to 155. I need MORE insulin now, not less. And I have definite long term nerve damage that is probably irreversible and makes my sugars a lot more erratic. I am going through early menopause due to all of this, and my fibromyalgia has kicked into overdrive. My diet has such a low percentage of carbohydrates in it that I needed to start eating more protein (mostly animal products, something I was previously trying to cut back on). With the weird hormonal changes that the descent into menopause causes, I suddenly gained twenty pounds in two months last spring, which is still with me, but fortunately has not increased at least. I am horribly fatigued. And thanks to the nerve damage, I wake up almost everyday with horrid nausea and pretty much have constant stomach pain. I will keep working on it, but it's frustrating for progress to be so slow or non existent after such a hard struggle.

I have a lot to be grateful for, and my faith has only increased in the face of all of this. I do need to make time to work on myself more. It's so hard to consider putting the kid's needs on hold while I make time for myself. I still haven't had a physical since last year, even though I've seen doctors more this year than in my whole life. That's just foolish, and I know it. But I have such a hard time keeping up with the bare minimums that adding more doctor's visits into the mix seems impossible. I wouldn't say that I'm depressed (I have been before, so I know the difference) but it is certainly easy to get discouraged right now. But with baby steps, and maybe some more prayer, I keep going forward.

The trouble with boys is that boys are always looking for trouble

Today I read the post of one of my favorite blogs that reminded me of one of the reasons I wanted girls so badly. Call me sexist, but as the mother of two boys (who are both mildly autistic), my fear is first for damage to their persons, and then for the damage to my property, and often both happen at the same time. When my husband once found our (at the time) three year old firstborn, T, on top of the refridgerator, the first words out of his mouth were "don't tell your mommy." I do feel like I spend so much time and energy keeping them from killing themselves. I think mothers without boys can rarely ever relate.

The self-injuries get old fast; I think of myself as a compassionate person generally speaking, but the guilt of one incident stands out very clearly in my mind when I felt I had been put through the wringer one too many times. My firstborn had yet again run into something hard while he was sprinting forward but looking behind him. I was so irritated as I was trying to get arms full of groceries through the door while juggling to get keys out of my purse and unlock our entry, I actually yelled at him. A few minutes later he was still holding his head while sitting on the couch, and I noticed blood trickling down his hand.

One of the challenges with autism is often an inability to communicate proportion or relativity (this nearly cost him his life a couple years ago, probably something akin to refusing to carry an epi pen). It looked like a small cut on his head to me, and I debated not calling his doctor (I was tired, outings with him were always a challenge). Naturally, the pediatrician wanted me to bring him in, and ten stitches later, I conceded that perhaps I should have been a little more sympathetic when he banged his head. I do everything I can to reduce the frequency of "boy induced" boo boos, but thank god for the blessing of being able to cover them in prayer everyday.

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.

time out for an OCD reflection

I haven't really talked about my dear daughter here yet, because I meant for this blog to be about asperger's. But I was commenting someone else's post tonight that was partially about the sense of purpose their previously challenging son was getting from enlisting in the army and graduating from basic training, and it really touched me as I related it to my own challenging child, the eldest. When she came to us, she was already a half grown teen, and there was a lot of emotional baggage that came with her. But one set of symptoms was really apparent to me, even though I didn't have a name for it at the time: obsessive compulsive disorder. This is a very serious developmental problem that is often a symptom of aspergers and autism, but lots of other people have it too.

It's been quite a journey learning about it, and knowing now that I am the only person out of five in my house that doesn't have it. If you know anything about it, you know how difficult it can make it to accomplish just the mundane details of everyday living. I'm not going to get into a full on description of it here tonight, but I felt like my dd deserved a tribute for the very big achievement she made recently. This in the face of her very active OCD, which in her case includes crippling agoraphobia (fear to leave the house and/or go out in public), claustrophobia, extreme anxiety disorder with panic attacks, major depression, and a truly absurd condition called trichtilomania (google it if you're interested). And she did it all without benefit of an IEP! We didn't have time. But she did have 504 plan accommodations, which were far from adequate, but I doubt we'd be celebrating now without it. Here was the comment I left on the other post:

This summer I watched my daughter's graduation ceremony from high school. She has horrible agoraphobia (thus I haven't been to church recently), and she could have chosen not to participate in the ceremony if she wanted. Even so, I pretty much held her hand all the way through it until she was up on stage, and there was a school nurse stationed nearby, but I was very proud that she had made the commitment to stand up with her peers and acknowledge what for her is a profound milestone.

But the sense of purpose that you were talking about, it was the first time I had felt that so acutely for her. She had made the original decision to return to being accountable to a school authority (after we adopted her, she home schooled for several years), and even though her curriculum was delivered though cyber technology in our house, it was still a really big deal for her to have to complete state set standards, deal with deadlines set by someone else, and communicate with her teachers and other strangers in the school.

The graduation ceremony was the first time she really met some of her classmates, but there was a lot of satisfaction in watching them all rise as a group and hearing the speaker discuss the expectation of their contribution in the world. You could see on their faces how they felt like they were part of something important.

This is a school that really emphasizes leadership and community service, and it really affected her in such a positive way in terms of helping her develop an avocation for her life. I really have to give all the credit to god for leading us to this school and helping her choose to enroll, plus seeing us through all the ups and downs as she finished the program.

I had been so afraid that she might never even make it this far, and I still have a lot of days when I wonder what the best way is to try to access her potential, but this is one of those situations where I have had to really let go and let god, and try to feel his peace.

Crossroads is definitely a good way to describe our current position, but I just have to keep the faith that he will continue to guide us no matter how apprehensive I might be that our hold on something finally positive is very tenuous.

elephant and baby steps

Today, I took two steps with my aspie teen. One caused major anxiety, the other was only minor. Three months ago when T turned 15, I felt a sudden urgency to focus on his future. He suddenly seemed so far from independence compared with his chronology, and the amount of time left before adulthood is quickly shrinking. Truly, I don't want mere independence. T has so many gifts that I feel a deep need to figure out how exactly to tap his potential to share with the outside world.

Part of this is guilt inspired. I have spent so much time on the needs of DD since she's been with us these last six and a half years, and now that she's graduated high school, it seems like it should be his turn for awhile. Anyway, today was our appointment with the gifted education program that is a satellite of T's cyber school. I asked if they could please help me evaluate whether or not their program was a good fit, because I really don't have a good sense of it. If he gets in, and we decide to accept, it will be his first formal schooling outside of the home since he was in pre school.

There is a large push by the Home School Legal Defense Association to try to convince their constituent members that home schooling all the way through high school is a good idea, and that more and more universities and other post high school institutions are starting to turn a favorable eye towards home schooled graduates. This is a faith based organization, and I agree with their philosophy to a point, but know that this is a hard sell. I have noticed in my home school groups a large attrition during the high school years as either parents feel like it's just too difficult or that they need the "easy" accreditation of an established traditional school to pave the way to college admission. I was never concerned about either of those challenges until recently when it became obvious that my son is smarter than me. Or at least more motivated.

I am neither too modest or a braggart. I simply feel that I might not be the best or sole resource to continue T's education. I already took on extra help through the means of a publicly funded cyber school program. But now I think I need even more. There are few educational qualifications or programs for being a stay at home schooling mom, but I felt reasonably capable when I started. My high school gpa was fine, graduated in the top ten percent of my class at a supposedly superior high school (although how great could a public school be in California?), did reasonably well on my college entrance exams, and graduated with just over a B average from a state university in a competitive program. It wasn't easy, but it wasn't rocket science either.

So what's my point? If people in my home school group with high school diplomas could educate their children, why shouldn't I be able to? I mean, I might have been trained to make money instead of teaching, but taking care of my own kids seemed like something I should be able to do alright. I read lots of books on that too, and I had some basic biological instincts. I began home schooling with reasonable confidence, and added resources when I thought I needed to as I went along. I always felt that if I wanted more help, well then my husband, my stepmother, father, brothers and father in law (who are ALL engineers, talk about being the odd one out) could chime in whenever I asked. My mother in law was a school teacher. There are a lot of teachers in my side of the family also; it should be in my genes, right? The longer I kept with it, the more I felt it was a really good idea. Spiritually, it felt really right. It certainly fit his learning style in his younger years. In fact, if you ask him now, he still wishes he could go back to it.

But as soon as I saw that he wasn't developing "evenly," I reconsidered a bit. I didn't feel like it was anything I was doing wrong exactly, it just bothered me that a child so obviously bright was taking a long time to learn to read, and an even longer time to write. Well some of it was my ignorance, though it would have been the same problem with teaching methods at traditional schools. T has a definite learning preference for the right side of the brain, and as soon as I gave up on phonics and let him learn by site reading, he took off like a racecar. He still can't write. But guess what, the traditional curriculum, though delivered by a cyber platform, didn't fix that problem either. So it's definitely not all me, those deficits exist with or without mom's teaching methods. But what to do about them?

And now, what to do about the areas in which he excels? This child has been almost completely self taught in math, all the way up to beginning algebra. Granted many 15 year olds are beyond algebra if they are in gifted programs, but how many of them were self taught? I have lent a guiding hand once in a blue moon, when he gets stuck on something, but a small assist and he is off and running again. He can spend hours everyday drawing in tedious detail, and he DOES spend hours everyday reading. He loves creating stories, and he has spent countless hours teaching himself spanish and german. I still can't play chess, and he picked it up in a couple of hours.

So today he spent three hours testing at the gifted program, and I spent even more than that filling out the paperwork and gathering documents. This was the third time I had been at the physical location of the school, and even though it seems outstanding, I still have absolutely no idea if I'm doing the right thing. I really just don't know. At one point the director of the program who was acting as proctor came out and asked me if T could diagram sentences, because when she asked him to spell a word that she used in a sentence, he asked her if the usage was as a direct object or indirect object. I laughed because I had no idea what he was talking about, and then told her I really didn't know if he ever had diagrammed sentences. I was pretty sure he could pick it up relatively quickly though. I asked T on our drive home if he really needed to know the answer to his question in order to do the spelling test, and he said no, he was just trying to translate the sentence into german in his head.

So I have to do something, that's obvious, he's definitely beyond me, and our financial means (you won't see any private tutors at this house), but WHAT. Lots of prayer will be helpful. If we decide it's a good fit, then there is a huge transportation hurdle to overcome. Prayer will be good for that too. If this program doesn't work out, there are a couple others to shoot for, but who knows if they're right, and if not, we are going to run out of options fast in podunk. I know I need to rely on god for everything, but I just don't always hear what he's saying.

Later this evening, I took T to a vacation bible school program, one of many that abound in this area like wild rabbits, and again, I handed him off to a man in a closed room with several other teenage boys and hoped that bible man wouldn't try an indoctrination that I'm uncomfortable with, because T is a long way from discernment. But he will never develop discernment without positive social experiences with other godly people. I can tell you that the class leader of 3-7 year olds was completely over the head of my 6 year old aspie. I'm glad too, because I believe god should be presented as joy and love, especially at that age. I heard a story full of vengeance and punishment, in a vocabulary meant for much older kids. Then we got to hear all about sin and the blood of jesus. I'm so glad he couldn't possibly have understood it, so the nightmares to which the other kids will most likely be subjected will be avoided at our house.

But beyond my critisms of that particular church, or church member, in addition to developing the boys academic skills, it's really time to step it up spiritually. Despite DD abject terror of the church, it's time to at least go back with the other kids, even if it means we leave her at home. At least the boys seemed to have a really good time a church tonight, it's a small victory. The more I get T out into the world, the more he is going to need to be fortified with the armor of god. He's led kind of a charmed life up until now, though he probably wouldn't see it that way. I know he feels like life has never been as good since we moved from the west coast to the east coast, but that mostly has to do with the arrival of his little brother, and less attention, which would have happened on either coast.

And he needs me too much. He would be happy if I could just be his almost everything, but I can't, and I shouldn't. I need to help him prepare to leave the nest, gently, without crashing and burning. It's always about finding that fine line and walking it. I want him to know the joys of being able to stand on your own two feet, and maybe even a wife and children, if that's possible. Well I know it's possible, but I mean in a positive way instead of a negative. With god all things are possible, if they're meant to be, and I really hope they are.

a willing participant

Tonight, I did something cool. I went to the local Library for "Murder Mystery Night." There were a lot of activities there: Making crafts (I wasn't interested, though, because I had been doing crafts all summer long), we all gathered and listened to a man who told us some stories (he told them very well and it was very interesting to me), we ate pizza and then we investigated a (made-up) murder. Afterwards, there was karaoke. At first I was nervous, but when I heard we were allowed to use YouTube, I felt some confidence. Heck, I actually raised my hands in the air and jumped up and down. I never thought that I would ever do that. I sang a song that I really liked. And then after everybody else got to try (a lot of them seemed really embarassed, but I wasn't! Ironic, huh?), I got to sing another song. I had a lot of fun!

I was social in public, and I was without my family. That was a big thing for me because usually I am very shy. Well, I was pretty shy at first, and I didn't really make close connections. But I did interact with other kids, so it's a start. I mean, I actually sang in public! So I think it's a BIG start! I'd like to do more things like this in the future!

oh the horror!

The emotion of fear is really fascinating to me. I actually used to hate horror movies. I thought they were too gross, but now I've grown a tolerance for it. Probably because of playing video games, there was a lot of blood in fighting games and horror games, but it was so fake looking. Gradually I got used to it, and my mom was always watching CSI shows, so I got used to that too. It was more the anticipation of the gory stuff, what I imagined was more disgusting then what was actually on the screen. The movie Halloween had very little blood in it, I bet most people wouldn't guess that, except for one scene where a girl gets her arm cut off.

I started to get really interested in japanese horror movies when I kept seeing the trailors on tv, like the Ring and the Grudge. I watched the american remakes too, but those really sucked. I guess I related more to a japanese audience; the scripts were buit on japanese urban legend and culture which just didn't translate well. Americans prefer werewolves and vampires I think, compared to asian audiences. There was a lot of psychological tension building in those films. I think it was a natural progression from all the horror survival video games I liked to play. I had started playing a lot of action video games with weapons, and they were getting boring. In the survival horror games, there was the added element of trying to stay alive avoiding monsters or forces compared with which you are underpowered. Just combat with other humans wasn't as exciting as winning against a zombie.

One of my favorite video games was called Clock Tower. It involved stealth and hiding, and I read that it was based on a Dario Argento movie called Phenomena. I saw it posted in parts on youtube, and then I started looking at other Argento movies too. They reminded me of some of the CSI shows that my mom watched, there was always a main character that would get drawn into the mystery somehow and go around investigating. The tension of who did it was always what pulled me in. And when you find out the killer is a main character, that is more involving. The climax where the killer is revealed is usually exposed by some tiny little detail, and that revelation knocks me off my seat. In one movie I guessed who the killer was early in the movie, but I still wasn't sure, and that kept me interested for the rest of the movie.

It's hard to find other people who like horror movies, but there are lots of them on the internet. I just wish I had someone like a local friend who liked the same stuff so we could talk about it and make our own movies. I guess it's not a popular hobby. But I don't think I'm weird. I think the fangirls are way more obsessed than me.

letting go, but cringing

One of the frequent characteristics of autism and aspergers is an unusually high degree of interest in something or another, in some cases you could even call it an all consuming obsession. T was no exception in this particular area; as a baby, it was fans (or anything that spun), there was a brief love affair with Thomas The Tank Engine, which was quickly supplanted by K'nex (which he still uses now as a calming technique), an intense occupation with drawing, lego mania, then all things Yu-Gi-Oh (if you need to ask, don't). As much as I disliked Yu-Gi-Oh, I would gladly take it back if I could rid him of his present affliction: horror movies and video games. And not just any, the really crappy kind. As a homeschooling parent for a lot of years, I learned to take advantage of his interests and turn them into teachable moments. Keeping his attention was always one of our biggest challenges. Up until Yu-Gi-Oh, it was rather easy to find opportunities to use all of those earlier interests into academic development. Truthfully, I could have used Yu-Gi-Oh for all kinds of school skills if I just hadn't disliked it so much. But now what?

I no longer have the primary responsibility for choosing his curriculum and supplemental materials as T is currently enrolled in a cyber charter school, complete with giant heavy text books and relatively up to date computer technology. Still, I consider his outside interests to be his most likely source of eventual independence and success, and I try hard to keep him busy with endeavors that I consider productive to his personal growth in some way.

But of all the things to be interested in, why the macabre? I can't STAND it. I also feel like it's some kind of sickness maybe even, or sign of psychopathology, although others have assured me that this is a common interest for young teenage boys, like battles and war, weapons or kickboxing. But seriously, yuck. You'd think I'd be dancing with joy that he really wants to learn how to write stories and make films, but it so hard to to find ways to help him turn this grotesque muck into something positive. I have had discussions with him about the importance of improving his drawing and creative writing skills, as well as using a video camera and learning how to use the computer technology in all those areas to edit his work. He has also expressed an interest in acting, but usually that means he wants to carry a knife. I tell him that at least participating in some kind of drama club or classes will help him to be a better director, but I'm not sure he could find the type of parts that would really interest him if he doesn't get to stab something.

The best I feel like I can do is try to help him be more discriminating in his choice of reading material and film selection. He tells me what he really likes are psychological thrillers where there is a lot of suspense with a good story and someone's life has to be in danger. So far, that usually means a big knife and lots of bloodshed. I have recently suffered through Friday the 13th, Halloween, Nightmare on Elm Street, and his newest favorite: anything by italian director Dario Argento. This means that I am now forced to watch even more crappy horror movies made in the seventies and eighties, two decades I hadn't minded leaving far behind me.

I can't help but think these kind of movies, especially in large amounts, are somehow spiritually damaging. And a minor point here, but ugh, the lousy production values! Yet at the same time, I am constantly looking for those activities which can be expanded on to turn into valuable teaching tools that will have a great positive impact on his future. As he quickly progresses through his teenage years, this becomes more crucial to me all the time. And how much censorship should I exercise at this age? How do I help him cultivate good judgment? The control freak in me wants to steer him out of this cess pool as fast as I can muster. The good parent in me wants to find some redeeming educational value in this pile of crap.

My efforts so far have included introduction to Alfred Hitchcock (he complained that most of the time, Hitchcock tells you "whodunit" too close to the beginning of the flick) classics, which netted some agreement between us that Psycho was a good movie. This led to his reading of the book on which the movie was based, and the crowning achievement of a voluntarily written book review which he was eager to post online. I should mention here that although I have forced him to sign up for myspace, blogger and goodreads.com, he is an extremely reluctant user of all three. My heart swelled tonight when he requested that I help him enter a review of Psycho onto goodreads. YAY!

But I still feel like there's a long way to go. I tried turning him on to Sir Arthur Conan Doyle, and the book just sat there for the three week check out period until I dutifully returned it to the library at due date. Still, there are other signs of progress. On our camping vacation, he begged me to let him bring an Agathe Christie book he didn't want to put on "pause." I had actually discouraged him from bringing a bunch of "filler" materials with him since I wanted him to take advantage of all the activities offered at camp (for which we were PAYING). I conceded that he could bring a book or two, it was a long car ride.

Yesterday when I asked him to please read the last autobiography I finished about an extraordinary man with aspergers, he asked if he could please wait until he was done with Clock of Doom by Paul Stewart. I'm thinking that's at least a step up from Halloween. I was so proud as he explained to me the significance of clocks commonly used as symbols in horror plots. He has also shown an surprising fascination with house music lately, which I discovered is in most of the soundtracks of the cruddy movies he likes. I would like to build on that too (it would be easier if I could tolerate it myself). So all told, we have elements of art, drama, music, writing, filmmaking and higher quality reading. I should be able to expand out from there, don't you think?

Next, I was thinking of introducing him to Stephen King and Dean Koontz. Is eleven too young to be exposed to Stephen King? That is our best guess of T's emotional/social age. I would think that a lot of people would agree that Stephen King has critical acclaim and some serious financial success. I've used his artistic interests against him as he hates to leave the house, but has grudingly taken part in free community art classes I have found here and there all summer. I only wish I had been more organized to take advantage of some of the free drama and film/podcasting classes around here as well, but hopefully they won't decrease in popularity before next summer.

If I could have gotten his medical assistance in order, I would have had access to other beneficial therapies as well. Like I said before, next year. I'm just so afraid to run out of time for entitled resources. We are always pressed for time. T, like a lot of aspies, and like his mommy, is a "night" person, so that makes things a little more challenging to find that mesh with our schedules. One of the toughest aspects is his lack of social skills. The older he gets, the more capability is expected from him by outsiders. Inclusion is a lot easier for my little one; random adults are much less forgiving of mental challenges in a non exclusive setting.

Well I just keep hoping and praying and searching; letting go by inches and sometimes feet.

As a side note, here is his review of Psycho, the book:

"I have always heard about the movie with the same title, that it's so great. But I only recently have heard that it was based on a novel. I really liked the book, I thought it was very good. It was a bit different from the movel; for example, it went much more in depth about Norman Bates' psychological struggle and how difficult his life was. In the movie, Norman seems like a nice guy, but in the book he was much more pitiful. I was amazed at how a deep nasty secret is revealed after someone else commits a small crime. It was very unexpected, and I really like that. In one sense, you could tell that something bad was on the verge of happening, but you would never guess how extreme it was going to be. This is so much more than a horror story, it's a deep psychological thriller."

And he gave it five starts out of five. Not too shabby for someone who has extreme trouble expressing himself in writing.

Asperger Book Review: Born On A Blue Day, Inside the Extraordinary Mind of an Autistic Savant, by Daniel Tammet

It's non-fiction, and I wouldn't say exactly that it's poetically written, or great literature, but I found it amazing. For one thing, forget the sexy title, the really interesting stuff in here is about this man's struggles, or may I even go so far as to be politically incorrect and say "deficits." How he copes with those differences is much more intriguing than his savant aptitudes.

I realize that people are getting more interested in hearing about autism currently, for which I am very thankful, but this book works for anyone who doesn't "fit in" or is going through the struggle of adolescence. How Daniel describes feeling like the odd one out in his family, being puzzled about how to make friends, being the proverbial square peg in a round hole are really universal themes. I don't downplay the autism aspect though, for anyone who wants to understand better what it's like to be in the shoes of someone who toils with the challenge of autism, either as an individual or a caretaker, this book really helps break it down very personally and clearly.

Frequently, one of the more difficult characteristics of autism is the strain to communicate, not only with speech but also in writing. Daniel is able to articulate so beautifully what goes on in his head and compare it with neuro typical experiences that I am doubly impressed. It really sheds a light for those of us who can't relate, and puts into words what other autistic individuals feel but can't express. I think other parents of kids with aspergers or high functioning autism are going to find great hope in these pages.

No, he still can't drive, and his life isn't easy, but it's definitely blessed; he lives independently, and by focusing on his strengths rather than problems he is financially independent with his own web business, has a healthy adult romantic relationship, and tries hard to advocate for others with autism by taking advantage of educational opportunities even though it's hard for him. It's a simple, quick read without a lot of scientific jargon to slow it down. I didn't just enjoy this book, I thank him for it. By the way, I haven't taken the time to write a review, but another book that I really liked with similar themes is John Elder Robison's Look Me In the Eye.

Stumped by an eight year old

I made brief reference to an impromptu question and answer session about autism that I gave at our family vacation summer camp in my last blog; I haven't been able to stop thinking about it. I have felt SOME obligation to participate in autism awareness as a mother of two boys with aspergers/autism and a wife to an adult with aspergers as well. I am not incredibly versed in autism science, and I am in fact a poor representative in general for others suffering with a family member's autism as all three of my aspies are very high functioning. So high functioning, in fact, that we get little sympathy. I never knew until recently that my sons (and probably my husband) qualify for medical assistance, which will provide educational tools for them that we couldn't possibly afford on our own. Their pediatricians never mentioned it. They probably think that we don't really need it, things aren't that bad. I always have the suspicion that when we are out in public together, and strangers (as well as extended family) witness the atypical behavior of any of my three guys, they probably chalk it up to them being "weird" at best, or assume that I am a bad mother at worst.

That goes extra for my dd with obsessive compulsive disorder; I have gotten outright dirty looks and nasty comments in situations where I have tried to be creative in helping her grow and develop in social venues. She has a high degree of social anxiety, and she doesn't want anyone to know it. I think there is definitely an assumption that if a person "looks normal" then they must also BE typical. There are no plaster casts, protective helmuts or wheel chairs that are obvious props of disability; there are no physical feature markers like the slanted eyelids of down syndrome. Many times a person with a disability prefers to keep that knowledge to themselves anyway so as not to stand out in crowd, many times their most fervent wish is to be typical and fit in as much as possible without drawing unwanted attention to themselves, it's amazing to me how much behavior is motivated by a person's strong desire to be "normal" and "accepted."

I still wish sometimes that there was a way to "warn" people in social situations with my mother that she is schizophrenic, so that they can understand that there is a reason for some of her odd behavior without being afraid of her. But she doesn't want to acknowledge her condition, even to herself, much less tell others. So last week when she told me that no one would really talk to her at a high school reunion function, I asked her a few questions and found out at the beginning of the luncheon she told one of her old casual acquaintence school mates that there were UFOs presently hovering over the Neshaminy Mall. I feel for her loneliness, and I also feel for the poor person who must have been fearful of my mother or at least very uncomfortable after what was inappropriate "small talk" in that situation. I keep trying to gently impress upon my mother that she isn't likely to find metaphysical like minds in the seventy plus crowd in our extremely religious conservative southest PA region, and definitely not at a high school reunion. I know it falls on deaf ears, the delusions of paranoia and grandeur run so deep in my mom that my entire adult life I have come to expect that on almost any social occasion that we attend together that she will at some point corner some unsuspecting victim with tales of the upcoming apocalypse.

I want to be a better advocate for raising awareness in regards to mental/emotional disabilities. I really want to make sure my children get the tools they need to be able to be socially appropriate and function independently in general society, I would love to save them from the difficulty and pain that I have witnessed my mother and husband suffer. I have finally realized that although a lot of it is working directly with them; another piece of it is definitely helping to improve societal acceptance of diversity.

Camp really lit a fire in me. I rose to the challenge of speaking in front of an assembled crowd, mostly because I figured how difficult could it be to tell people about my boys for five minutes? Well it turned out to be a lot harder than I thought. So far, my consciouness raising has mostly been limited to one on one conversations with adults that come into contact with my children and maybe need to be aware of their differences. But the very first question I was asked as I stood up on the stage in front of maybe eighty people threw me for a loop, I was actually stuttering and sweating a little as I wracked my brain to come up with an appropriate answer for a very simple question: What is autism?

No one had ever asked me that before, and what made it especially challenging was that it came from an eight year old. I frantically searched my vocabulary data banks to try to think of a way to explain it that he could understand. I'm sorry to say that I did a pretty lousy job. But I thank god for his question, because you can bet that next time someone asks me that, I'm going to have an answer ready that a young child can understand. It's not only important for adults to become more aware, but obviously, the children of my sons present generation will be the adults in their future as well, long after their father and I are gone. In fact now I will be soliciting questions from others, so I can prepare appropriate answers for all future opportunities. One thing my children have taught me is the importance of "teachable moments," and they don't just come when it's convenient.

Aspies Welcome

A week at Camp Sequanota

There are some childhood memories that are so sacred that you fear to spoil them by revisiting the scene of the crime in reality as an adult. Thank god this wasn’t one of them. At worst, I thought my kids, hubby and I would have a week away from our daily grind up in the beautiful Allegheny mountains in a place I used to love, and at best, that we would all have a really good time in a special camp that has a special place in my heart. Never did I dream that it could possibly surpass all my wildest expectations by the height of a mountain peak.

My poor husband hasn’t had a vacation in over four years. This matters to me, as he works incredibly hard to support us including a hellacious commute each way into downtown Philly (40 min drive plus 40 min train ride plus 10 min walk) every weekday. This is in some part so the kids won’t have to leave a stable home out in the safer countryside, and so that we can live on a budget that allows me to not have to work outside of the house. Everyone in my immediate family would agree that I work like a dog inside the house. I am not complaining; no one held a gun to my head and made me raise three children with developmental disabilities; still, we can safely say that we could all really use a vacation.

But a financial crisis of epic proportions several years ago put any kind of travel out of reach, and we were determined to save up for a trip to Los Angeles to see our family rather than make small short jaunts here and there. We always try to have a good time with the kids, so it wasn’t vacation so much that they were missing out on as an opportunity to see their family and friends in Los Angeles. T made it out by himself a couple of years ago, but that journey was completely sidelined by acute perforated appendicitis, and now he won’t leave mommy’s side for any kind of bribe, not even Disneyland and unlimited hours on Uncle’s playstation 3.

So we had just about saved up enough dough to get all five of us out to L.A. complete with car rental and miscellaneous hotel stays, courtesy of the addition of G.W. Bush’s economic stimulus plan, when gas prices skyrocketed. Plane ticket fares soon followed, and we were crushed. The airline we normally travel DOUBLED their prices, and everybody else was already more expensive anyway. If DH had more time off, we would simply drive out, but for right now, I’m just going to keep saving in combination with hoping for a miracle.

And although it was diametrically opposed to our ultimate goal, I couldn’t stand the idea of not taking the kids anywhere, especially after getting their hopes up about California. And then we still had the issue of DH working like a slave dog with no rest for the weary. SO, we dipped deep into our Cali fund, and took a trip down memory lane. A week at my favorite childhood spot, and it was not only fun, it was AWESOME.

When I was a wee tot, my Uncle E (ex husband of my mom’s sister) was invited to be a guest pastor at a Christian summer camp in the mountains for a family week which included a free ride for the family. That was actually very impressive since he has SIX freaking kids. Somehow or another, my mom and us kids got an invitation too. I think. I was too young to remember it, or maybe not yet born. From what I can remember of the legend, several of the families from the church at which my uncle was the pastor decided to attend as well. And a tradition was semi-born.

Within a short period of time after, my Uncle’s family switched over to Camp Sequanota for subsequent summers, and brought some of his congregation with him. I do not remember if he was a guest minister, but who wouldn’t love a free week of camp in exchange for service, so I don’t doubt it. That deal is still standard today. In fact, a lot of the staff volunteers, and the paid staff ain’t gettin’ much. Anyways, not much later after our introduction to the camp, my Aunt and Uncle were divorced, but lucky for me, she kept the camp attendance in the settlement, so to speak. My mother was divorced by then as well. She had to have been, or we would have NEVER attended. Camp was/is a four letter word for my dad. I don’t know how many summers in a row my family attended, but I specifically remember ages 3, 7, 8, and 12. I also specifically dragged my younger sister there when I was 19, and then my husband a few years after we were married, I was 25.

I am absolutely sure that there were other years that I can’t recall. In fact, I only remember age three since there is a picture of me sitting on my stepsister’s shoulder outside one of the camp buildings. How she ended up there, I can’t imagine. There is nothing like pouring fresh salt in the wounds of divorce more than your ex-husband (who wanted the divorce) asking you to take his stepchildren and new biological children on your summer vacation with you, but god bless my mother, she was and is a generous soul. I wasn't actually old enough to remember how my mom felt about it, but I can imagine some. Anyway, at various times, my sisters (who don't belong to my mom) were with us. In that way, all of us siblings got to be together in one of the most fun venues of our lives all at the same time. In fact, in the same cabin with seven of my cousins. But that actually added to the fun.

One of their family members at Sequanota is a family tradition, almost all six of my cousins worked at the Camp over the years during the summers as they reached the appropriate ages, and they were all certainly prolific campers. My cousin J married his wife, who he had met working at the camp, during summer camp 1986, the same year I had taken my little sister there. He had actually worked his way up to Assistant Camp Director. He and his wife, who still live locally, had taken their four boys there too, I suspect that eventually too many competing summer interests interfered, cause it’s been awhile for them now. Even my grandmother had been a camper there, and my Auntie R continued the tradition long after her kids had grown and gone. I had always wanted to take my own kids there.

Besides the obvious benefits, it seemed a fitting tribute. In 1992, when I brought not only my dear husband to camp for the first time, but also our old friend and roommate D.S. (for whom our younger son is named) along with my mother, I met up with some of our old family friends. I had been telling several of them how hard we had been trying to get pregnant, complete with a miscarriage just a year previous, and most of them gave their empathy including promises of prayer. Elfriede, the head of an unbelievably enduring Sequanota family, told me to go home and relax, that she could feel that it was going to happen for me. Sure enough, I was pregnant in less than a month, and gave birth to T the following May. I was really hoping to see Elfriede this year so that I could blame her properly, but alas, she was struck by poisen ivy.

So this was the summer that T finally got to grace the entrance to Sequanota. It only took me fifteen years to fulfill that wish. At least it was only six years for little DS. It was the first time that 20 year old DD had ever been also, and I felt proud that I was continuing the Harsh at Sequanota tradition. By the end of the week, all of the kids, including little DS, begged me to bring them back again next year. I couldn’t imagine the possibility that it would be better than what I had remembered as a child. Even DH, who doesn’t like anything, had a really great time.

To call it “Camp” is sort of a misnomer. There are no tents in sight, although I believe there is at least one night when the kids sleep out under the stars with the staff if they choose. Once upon a time there were old fashioned covered wagons that could be used for sleep outs. The schedule is absolutely packed with activities, but family week is kind of like the old “Club Med” commercials, you can exercise as much as you want, or exercise your right not to exercise at all. There are actually a series of stone or wood cabins, built on either side of the dining hall as funding originally permitted. The cabins consist of one large room with at least 12 bunks including thin mattress, plus a bathroom with real plumbing.

Rather bare bones plumbing to be sure, but a week without flush toilets and showers would have been a deal breaker for me. Each cabin has its own hot water heater, and there are electrical outlets every few feet on the walls. There used to be fire places which have since been boarded up, and the cabins are “winterized” which as far as I can tell means they sealed up all the cracks they could and added space heaters. You have to give them props, because the camp recently celebrated their sixtieth anniversary, and I’m amazed that the cabins have lasted that long. We quickly rearranged all the bunks to suit us, and hung curtains, set up a “kitchen” bunk, hooked up an entertainment center, as well as a loft for little DS alone to play on. You have to bring your own linens for family week, but really, the price is spectacularly cheap for a family of five at four meals a day plus private lodging. It averages out to less than $160 per person. I think that’s cheaper than when we last went in 1992.

After our first night we had pretty much set everything up the way we wanted, when we got a surprise knock at the door. My cousin J, wife and three of his sons plus dog came in from town to visit us, and both my boys really enjoyed meeting up with some more of their cousins. I absolutely adore J’s wife (he’s ok too), and we walked around the camp as many of the old timers called out their greetings to my relatives. About that time my boys discovered the snack shack, and were absolutely amazed at our willingness to let them buy ice cream. I shy away from excess sugar for both the kids, but I knew they would be surprised at how fast they would burn it off. There are very few idle moments at Camp Sequanota, though they do also cater to the senior crowd.

In the early eighties there was an “enrichment center” built with modern conveniences, sort of a semi hotel with a group kitchen used for conferences and for people who are more “delicate.” Mothers with newborns often opt to stay in the Enrichment Center instead of a cabin. Each room only sleeps two, but you can take several rooms there if you prefer. While we stayed in one of the cabins, my mom joined the fifty five and up group down at the more cushy Enrichment Center for the week. All of the seniors joined us down at the dining hall for meals as well as all other activities; they were in all ways a completely integrated part of family week.

You know what the best part was for me? They fed us four times a day. Breakfast was at 8:30, and included a continental breakfast that you could show up for anytime up until 9:30. I don’t know what hot breakfasts they served, I was still sleeping. But I can tell you that I could at least have chosen from an array of cold cereals, plus bagels, pop tarts, toast, yogurt and a giant fruit bowl from which I commonly stole apples and bananas at 9:25. Lunch and dinner were always something tasty, and if I couldn’t get the kids to eat it (read “little DS”), there was always a loaf of bread plus peanut butter and jelly on the counter if you wanted it.

We all gathered together for lunch at 12:30 and dinner at 5:30, whereby we would find already set round tables that sat eight. Most families ate together, though the children would often ask if they could sit at someone else’s table. The counselors spread themselves among the family at the beginning of the week, but often sat at an exclusive table as the week wore on and everybody already knew everybody else. There would be a brief grace, then someone from the table would go up to the counter and bring back large serving bowls full of goodies, I promise you it wasn’t health food, but it was good food. At lunch and dinner you got dessert, and you cleared your own table and wiped it down. After the two later meals, we would sing together for about fifteen minutes, and then were sent on our merry way. Around 9:30 every night, there was some kind of goody served as “fellowship” snack back in the dining hall. I loved it. I didn’t cook a darn thing all week, and that was vacation to me.

Morning activities consisted of bible study, swimming lessons for the brave (the pool isn’t heated) and usually something else like rock climbing or hiking. The arts and crafts cabin was open each morning and afternoon for a couple of hours, and I was pleasantly surprised by how much my boys loved it as well as my daughter. We came home with a whole box full of stuff from there (for which I naturally have no room in the house). There was jewelry and Christmas ornaments, suncatchers and wall decorations, tie dye shirts and foam figurines. It would take another three pages just to describe the arts and crafts cabin.

The pool was open for free swim from 2-5 everyday, and most days the weather cooperated. It is this gigantic oval set in the middle of hundred year old trees and divided in to three sections of depth. The kids have to take a swim test before they can go in the deep end which includes a diving board. But if swimming is not your thing, it’s ok. Every afternoon included an array of alternate activities, and almost all were included in the price. They had horseback riding, canoeing, rafting, softball, volleyball, etc. A lot of the older guys take advantage of the golf course next to the camp. The only thing I paid extra for was 5 dollars apiece for the big kids to go fishing (although DH and little DS some how were included for free), and also 3 bucks each for DD and T to do ceramics as well, though my Mom ended up taking T’s ceramic slot. Camp wore that boy OUT. It’s the first time I’ve seen him nap since he was three.

The most exciting things the kids did were probably the rock climbing and riding the zipline. T got a new digital camera from my brother for his birthday, from which we have some footage of them performing those daring deeds. The zipline is a new addition which was built at the edges of the athletic field. They usually only open it once during the week, but after much begging, they did it a second time for us. You have a sixty foot tower, and a cable suspended between what looks like two telephone poles, at least a hundred feet apart. They hook you by a harness to a ring that encircles the cable. The platform to which you climb on your own power (that was the tough part) is slightly higher than the other end of the cable, so physics does the rest.

You push off the platform and “zip” to the other end of the field. Usually, you come back at least half way before coming to rest, at which point you slide down an “exit” rope to the ground. You have to be over 12 to go on the zipline, six year old DS was actually so afraid he begged us not to go on. Slightly less scary but no less exciting was the fishing, during which all of them, including D, caught a fish. Little DS wanted to hold his fish in his hand, during which he squeezed just a little too hard, and the slimy fish popped right out and dove gracefully back into the water.

Only DH, DD and T did the rock climbing, and my DH actually made it all the way to the top. He got some nasty gashes on his leg to show for it, and I felt the need to remind him of his advancing years before proceeding with any of the other activities. “I didn’t even feel it at the time!” Yeah ok, but he sure felt it in the heavily chlorinated water of the swimming pool a little while later. In fact, DH had to see the doctor on the Monday after we got back to be treated for some torn cartilage in his rib cage. Nice. Thank god for narcotics. I can’t really talk, because during one rainy downpour, I ran for the comfort of the arts and crafts cabin only to land solidly on my back as I slid on the wet concrete right through the door. It was a pretty spectacular entrance. Like I said, thank god for narcotics. I consider this week to be the recovery from my vacation.

After dinner was actually my favorite part of the day, there was always a game of something or other going on, and I am an outstanding spectator. In addition to all the great things the staff offered everyday, some lovely annual visitor brings his moon bounce to family camp each year, and every afternoon and evening little DS burned off some more calories inside the “Lion King.” There is also a snack shack that sells all kinds of goodies in addition to camp memorabilia as fund raisers, and the kids were very altruistic about contributing their allowances to this effort. Seriously, where else can you still get a Popsicle for twenty five cents?

The camp has 450 beautifully wooded acres decorated by nature, and there are several worship sites built all over camp. When I was little, I remember going to a different site each night for a campfire and worship service. They still do almost the same thing. Though you can arrive as early as 2 pm Sunday to register and have a swim before dinner, we missed both events and got there only in time for the first worship service at founder’s chapel just outside the woods. The next different worship site we used is down a hill with wood steps built into the hillside, and the same for benches just before a clearing with a campsite. I’ve been at that campfire every time I’ve been to Sequanota, but I can’t for the life of me remember the name of it now.

DD’s father, big M (for those of you who don’t know or remember, we borrowed DD from my cousins seven years ago), who used to work there, tells me he thinks it’s called Council fire, but I think that may just be the occasion. The best of all is a site well up into the woods at a pretty steep climb called Luther League, and I found out this summer that some friends of ours got married there just a couple years after DH and I were there in 1992. What a joy it was to watch our kids play together this year. T actually had one of the beefier counselors carry him on his shoulders the last half way up the hill to Luther League, it was that steep. Last but not least, the pool was decorated with lights and candles for worship on our final evening, and even the pool is isolated in the middle of the woods down a wooden flight of steps built into the hillside. The beauty of the place never ceases to take my breath away. But it’s not the best part.

The fellowship is by far the best part of camp. I had called before deciding to attend, and asked if the camp staff was prepared to deal with two kids with autism and another with obsessive compulsive disorder during family week, and they encouraged me with open arms. It just so happened that they had just hosted an autism day camp the week before, and in the later part of summer, they hold an annual “Mentally challenged” camp which encompasses everything from mental retardation to emotionally abused and head injured. The staff took so much weight off of DH and me, I didn’t know how much the kids would be able to participate in activities without us, but we were welcomed along for everything, and as it turned out, the kids felt comfortable to leave us and go off with the others. The program director was well aware of our situation, and she assigned specific staff to just our kids.

The staffers even set up a “sweet heart” dinner for the adults; they decorated the dining hall with hearts, candles and glitter, then took all of our kids up to the outside pavilion for a cookout. DD was willing to watch D all by herself as she often does at home, but I was SO nervous about him being in a large group of kids up in the middle of the woods that the program director had one of the counselors dedicated just to watching little DS. He is the one of my kids that I am always terrified about running in front of a car, or jumping off of a cliff because he suddenly decides he can fly. I am sure he will be an amazing adult if I can just get him to survive his childhood. I don’t know if I was really hormonal that night or what, but I cried during the first half of the dinner, and I thank god that just about twenty minutes after we started, the program director came back to pick something up from the kitchen, and told me how well little DS was doing. I was finally able to relax and enjoy it when it seemed like they were really taking me seriously.

That wasn’t the only break I got from my near constant daily little DS vigilance. After evening worship service, there was always that 9:30 snack, and after that, most people with little kids went off to bed. But there was always a contingent of hard core gamers that stayed behind in the dining hall. DH joined in with me the first year he went, but all during camp week he would take little DS off to bed and leave me with one or both of the big kids to play with the other big kids. The staffers even joined in initially but you could count them out by about 10 or 11. They leave the dining hall open all night for family week, and some of us closed the place down every night. Every year in my younger days, one of the exciting parts was always to see who brought what new board games.

There were always some old standards for the dice and card players, and trivial pursuit became a stock item after 1980. But you also have modern additions such as Encore, Scattegories, Pictionary etc. I’m pretty sure I saw chess and checkers along with Monopoly as well. One thing they didn’t have – electrically powered games. I saw more than one teen going through video game withdrawal, although the battery powered handhelds were very popular. In fact, if you happened by OUR cabin, you would have seen a PS2 complete with spiderman and mini-tv, not to mention the videos the kid’s watched on daddy’s laptop. Next year I won’t even bother with those, there was just too much else to do. One of the reasons my DH was happy to take little DS to bed was because DH was TIRED. Little DS gave him the excuse he needed to get some much needed rest after the day’s rock climbing and games of capture the flag. Neither my DH or I felt like we needed adult time alone at night, we had so much help with little DS all day long that it really felt like a vacation.

In fact, the whole week the staff really stepped up to the plate and involved little DS in everything; he was one of the youngest ones there. Our old friends now have three boys, the oldest of which was 11, and he became a special friend to both T and little DS all week. The most amazing thing was probably watching DD, who is very nervous around new people, separate herself from us and make new friends. That was especially AWESOME. This fall she will be re-entering a class room for the first time in seven years, and I have been praying for her to be fortified for doing so. Mr. Old Friend told me near the end of the week, that my DD had made some really insightful comments during the group bible study, and just to hear that she opened her mouth at all was really miraculous. She even told me that she thought it was fun when I asked her if she would be up for performing during “skit” night.

Ah, skit night. The camp is really big on skits. Much to the children’s delight, almost every worship service included a funny skit. Then there is both a talent night, where skits abound, and then a dedicated skit night. I had been working on some t shirts for the boys in the arts and crafts cabin that had some pithy statements about autism. More than once, I had a few individuals come up to me and make comments about the need for more autism awareness, which gave me the idea for our family skit. I asked for volunteers from the audience, which turned out to be my downfall, and then took them as well as T and DD up on stage.

I was supposed to pretend to be a first time camp counselor, and the others were my “campers.” The idea was that I would give them all camping tasks (clearing the ground, starting a fire, setting up tents, making food, etc) and at the end of every request, T would say “I can’t do that, I’m autistic,” then I would ask his sister to minister to the poor boy, and then would get the others to do the actual tasks. Unfortunately I go so many volunteers, that it was hard to keep them straight and busy; they were supposed to mime everything they were doing, but actually ended up using so many props that the audience was in hysterics. Finally, after several tasks are performed by the others, I pretend to get really frustrated with T, and I say “you won’t do ANYTHING, what CAN you do?” and he replies “I’m pretty good at sitting in this chair.”

Well that about brought down the house, but even I was having a hard time containing my laughter when the ones who were supposed to be bringing me “fire wood” carried a church pew into the center of stage. At the very end, I had all my “campers” line up in two rows, and tell them since they’ve done such a great job of everything, I’m going to give them a reward – some ice cream for dessert. At this point, T dives off his chair, pushes everybody else out of his way, crawls under their legs, pops up at the front of the row right at my face and says, “PLEASE can I have some ice cream, I’m AUTISTIC.” Well I thought at that point perhaps we had gone too far, because some of the elderly ladies in the front row looked like they were having a major challenge with bladder control, and I saw a few others blowing their noses and wiping away tears.

But after I got everybody to put the stuff back in its place (including the church pew), I sent them all away, and then I promised a piece of chocolate to anyone in the audience who would ask me a question about autism. Now, I never was that athletic, but that night was the absolute epitome of pathetic arm throwing as I would invariable hit someone a couple rows in front of whoever was asking me a question. Fortunately they were all pretty generous and made sure that whoever was supposed to get the chocolate actually received it in the long run.

My family also did an old skit classic called bubblegum; DH sits down in a chair, pretends to chew on gum, and then sticks it to the bottom of the chair. He leaves, then I approached the chair and get my hand “stuck” in his gum. I pretend to throw it on the floor, and as I’m leaving, T comes on the stage and steps in it. He picks it off his foot, and tosses it behind him as he walks away. DD comes on the stage pretending to pick it out of her hair. When she is finished, she sticks it back to the bottom of the chair, then walks off stage. DH then returns, sits in chair, pretends to pick gum off the bottom of the chair and stick it back in his mouth. Audience laughs hysterically. We win prizes. You know what they were? The chance to be pawns in other people’s skits. DH got major punked during one of the other family’s skits, but I thought it was only fair as he had stepped on their son during capture the flag the previous day.

The hard thing about skit night is that you know it’s your last night. So while you are laughing, you are alternately crying and preparing to say goodbye to both fellow campers and staff who now feel like your family, and there is a good chance that you are never going to see some of them again. Even the old timers agreed that this particular summer included a particularly outstanding staff. One of them got up and gave a speech about it, and I saw some of the counselors crying. After snack, we went back to the cabin and half way packed up. I knew it was going to be very hard to do it in the morning. I didn’t sleep all night, most likely fearing an inability to wake up in the morning. When DH woke up on Saturday, we left the kids sleeping and went down to breakfast together. I took my camera and collected last minute pictures along with email addresses. My mom couldn’t stop crying, it was really touching to see how deeply she felt the powerful spiritual pull of the camp and the fellowship of the staff and other campers.

You want to know what the worst part of camp was? Saying goodbye was hard, but the absolute most awful was the trip up and back. It is a four and a half hour drive, but with my elderly mother who needs to stop every hour and a half, it was a six and a half hour drive. Back when DH and I first went, he was sure he could cut down the four and half hours to four, and he did. In the spirit of competition, on the way back I drove, and I cut that down further to three and a half. Stupid. But man, I would have been thrilled now to do it in four and a half, or even five. But by the end of six and a half hours in my van which at the moment has a broken air conditioner, I was ready to kill. Or sleep. We made it even worse on the way home by stopping to see my cousins on our way out of town, then taking a nice sit down leisurely lunch before getting on the turnpike. Then of course we had to stop and pick up our dogs, hosted for the week by DD’s actual mother and father, my other cousins, at the other end of the turnpike. Then riding home that last leg with both dogs in an already cramped car. Super ugh. If you want to, you can bring your pets to the camp, so we’ll see how we feel at the next opportunity. But I will gladly do it again next year, and every year after if I’m lucky.

to be or not to be 15

I had my fifteenth birthday last month, and some people thought it was weird that I wanted to have a party at Chuck E Cheese. But they have great arcade games there. Actually there were more adults at my party than kids, and a lot of them went nuts on the games. I get along better with adults than kids my age anyway.

Kids my age a lot of times do stupid things like waste time trying to bug girls and show off. I always think about having a serious relationship, finding someone who likes the same things I like, and eventually leading to marriage way down the road. But I'm in no hurry to get there, I'd like to take things slowly. I have no interest in drinking, or taking drugs. I tried alcohol once; piss would have been better. I've seen a lot of reality tv shows where people do drugs and then act really really dumb, and then pass out like a corpse. What's the point of that? I know some people take drugs because they hate their lives, but they should spend some time in a foreign country and see if they don't think their lives are a lot better than they thought.

The point about age with Asperger's is that a lot of kids who have it are only two thirds the maturity of their chronological age. So therefore I'm more like ten? But I don't FEEL like ten to me. But my mom says I am. I guess because people my age are getting jobs, or learning to drive, or are more independent. I don't really know how different I am from other kids, because how I am seems normal to me.

When I'm in public, I think I'm actually very mature, or more mature than other people my age. I don't spaz out in public, and I don't swear. But a lot of times I don't notice how other people are feeling, and I don't respond to them. When something bugs me, I try to ignore it until it drives me nuts and then I explode.

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.

I don't know what I'm doing, but I have something to say.

I have this overwhelming need recently to find an outlet of expression, but technology has passed me by. Or maybe I can just look at it as learning a new thing. Whatever. Way to turn over a new leaf with my insecurity on my sleeve.

Usually my motivation to express myself doesn't conquer my fear of the internet, but tonight I am jumping on the blogging band wagon. I have been stalking the blogs of other people for some time now, but I really really like my privacy. And even after some diligent efforts to find a blog program that allows people of your choice to view your blogs with just a password, I have not succeeded in discovering the perfect program for me. So I'm going public. Because I refuse to make my family and friends sign up for one more account at some obscure site that thinks it's the latest and greatest thing, and that everyone is just dying to give it their personal email account information.

I don't even know half their email accounts anyway; I got lazy about collecting those after the beauty of myspace allowed me to email people without knowing their addresses. The technology makes me uneasy, but I fully admit to being dependent on it. So maybe I should have titled myself "the reluctant blogger." I am definitely skittish. And grouchy because I can't have my own way.

But there are definite advantages to blogging. In my case, I have a lot of people that I care about that are far away. Many of them care a lot about our kids, and are especially interested in their development since they are not neuro typical. This is a great way to share the all the details, in absence of a large group conference call on a daily basis. And I can do this whenever it suits me, namely late at night or in the wee hours of the morning when the house is quiet and everyone is asleep.

I should be grateful to live during a time that includes such fabulous communication options. I just feel like a technology dinosaur, and I'm nervous about what I don't know. I will probably delete any anonymous comments, that is, IF I've enabled them, I don't know. My hypocrisy knows no limits; I leave anonymous comments on blogs all the time.

So with a complete lack of confidence, I do now proceed. Why do I have such a desire to reach out more? I don't really know. Fifteen years ago, I gave birth to a fervently desired baby boy, and I feel like I've been stumbling around in the dark ever since. A multitude of challenges for us and for him. A year ago, we got the most precise diagnosis yet: Asperger's syndrome. I still hadn't gotten used to the autism label. Every time I think I've got a handle on it, the goal changes.

Asperger's syndrome; maybe knowing that would help me figure out how to better proceed. And then I had a mini-stroke (I didn't even know there was such a thing). Diagnosis for me? Diabetes, at a high degree. All my fears came rushing back that had plagued me at his birth: would I live long enough to make sure his needs were met? To make sure he would grow into a fully functioning independent adult? To maximize his potential? If I do die, will his godparents be up to the task?

Well it's a year later, and I'm still here, thank god for that. And still trying to figure out how best to proceed. Some how, his entering the high school years has made all the decisions we have to make from now on seem more critical to an exponential degree.

Six years ago, we were blessed with another baby, and I thought it was a chance to get it right, in some ways redeem ourselves by applying the lessons learned from baby number one. Baby number two was a package deal with a teenage daughter borrowed from a cousin as a "mother's helper." She was full of lessons for us too as we navigated the path of discovery for her own special needs. I feel like I have a full time job as a mental health advocate, but I'm losing my mind.

You'd think I'd have the hang of this by now, but truly, I feel completely inadequate to the task. As my baby turned six, it became all too obvious that he is not only delayed, but it looks like he'll be going down the same path as his big brother. I know there is a genetic link to autism, but there was such an obvious reaction to vaccines and/or mercury in the case of my big boy, that it never occurred to me that the little one might be affected too by a similar condition.

The baby has never been vaccinated, though lord knows what's in his dental materials (at least it's not mercury). I feel like I have failed them both. I know I can't control the outcome of the combination of my genes with my husband's, but I can be just as irrational as anybody else. In fact, we had planned to never again dip into our gene pool after baby number one, just in case, but sometimes god laughs at the plans we mere mortals make.

I wouldn't undo it if I could. Those two precious children that were created as a result of our love for each other are most definitely the joy of our lives and god's greatest blessing. But it overwhelms me to think that every decision I make on their behalf in raising them is ultra-crucial. The journey has been rough, and looks like it's only getting more difficult. Books, prayer and crying on shoulders have become my greatest refuge.

In the midst of my whining, I have to make a point of what I've been telling everyone lately: we have actually won the autism lottery, if there is such a thing. Other parents we've met, who have autistic children, envy us and would for sure tell me to shut up. My older son, and my younger son as well, if he does indeed have the same label, are definitely on the high functioning end of the spectrum.

So how do I best exploit that? How do I make certain that they get the full benefit of every service they're entitled to and that every appropriate educational tool is applied? I know they have gifts to contribute to the world, how do I make sure they can best access their talents? My guilt that I might do the wrong thing, that I might not have done the right thing, well I think that is a fairly universal fear among all parents. But for exceptional children, I can easily imagine that it is probably doubled or tripled.

A few years ago, as my oldest son approached middle school age, I agonized over the switch from exclusively home schooling to either a hybrid of home school and private school, or a fairly new option in education: cyber school. I knew I needed more support. I finally settled on the latter, and it has been both really great and really difficult. The poor kid has been putting in sixty hour weeks to keep up, doesn't have any formal accommodations, but he mostly gets A's. It's almost three years later, and I still don't know if I did the right thing.

One very interesting day came during his first year of enrollment; he was studying diseases in his health class. "Mom, have you ever heard of autism?" I had been wondering when the right time would come to have a discussion about that. Looked like it had arrived. "Yes, I've heard of autism, and you have it." It had never really occurred to him before that he was different, and I felt no need to point it out to him.

Up until recently, inclusion had never been too difficult for him. People occasionally told me that they thought he was "Interesting," including one of the pastors from our church. But nobody except some of our closest inner circle really knew, and even most of them remained blissfully ignorant. I say that because there are definitely those who would prefer not to acknowledge anything but perfection.

As puberty advances though, there is really no denying that quirks exist. I have a child who is taller than me, most certainly a fifteen year old physically, even will NEED to shave soon, and yet he is really like a ten year old in terms of social development and emotional maturity. He can no longer avoid the knowledge that other kids his age are different, even though that's who he hangs out with, and it hurts him. That hurts me, too.

We had another one of those conversations not too long ago. "T, have you ever heard the word 'Asperger'?" He thought really hard for a moment. "Is that like the guy on youtube who reviews video games? He said a game he played was like an ass burger with a side of fries." I told him I was pretty sure they weren't related, as soon as I was done swallowing my laughter. I picked out a book from the library for us to read together, a fictional account of a fifteen year old with Asperger's who tries to solve a neighborhood murder mystery (the victim is a dog). My son loved it, I was disappointed. But it was a start.

We are both testing out the edges of what Asperger's means to us, and what we need to do about it. Right now, my biggest challenge is getting him to relate what he is doing presently with his education to the career goals he has for ten years from now. More than five minutes into the future is difficult for him to visualize. We have to pick an educational resource for this fall, and it's proving to be a really weighty consideration.

Somehow all of this is creating a need in me to document our journey. Hopefully I'll be getting him to make some contributions of his own. I know the grandparents would love that, even if it's just "today I ate a peanut butter sandwich, and then I studied my Spanish before I played video games."

We take all the signs of progress we can get.