"Temple Grandin" the movie, it rocks, and so does the person

Well, I already technically blew it for NaBloPoMo since we had some computer issues today, but hopefully you all (all one of you) will forgive me missing November 2nd, since it's after midnight. Just watched "Temple Grandin" for the first time, courtesy of a DVD just received for my birthday from my dear parents. Lots of very familiar moments and anxiety causing scenes.

For anyone not familiar, Temple Grandin is a famous person in the autism community for, well, having autism, to a pretty significant degree, and managing to be very financially successful and independent in the world, and for being a very vocal advocate for persons with a disability (especially autism).

Temple holds a special place in our hearts, because she also represents hope. Hope is critical to getting through the journey. One day, I hope that won't be so. Hopefully at some point, children will all be assessed for their particular education needs, and an appropriate curriculum will be applied without parents have to battle to the death for it, and without our children having to be so despondent from being forced into an ill fitting cookie mold that the school finally concedes they need specially designed instruction, and without making them endure ridiculous measures under the banner of "special education." Hopefully, someday, the federal government won't just require FAPE from local schools, but will fund it. Hopefully, someday, teachers won't have to worry about their jobs being threatened if they dare suggest that a one size fits all teaching method doesn't work for specific child. Hopefully, we will get rid of money wasted on NCLB, and switch to finding effective practices for all kids, making tests redundant, not taught to. When your child comes home miserable everyday from school, that's intolerable.

But until that day, we have hope. Hope that our significantly delayed, non verbal child WILL learn to speak eventually. Hope that they will develop functional empathy, and be able to navigate around and with other people in the world on their own. Hope that there is some method by which our kids can cope with an environment overwhelming with sensory input, and still thrive. Hope that we can find someone in the universe who sees what's in our children, dying to break out, and helps them be able to do that. Hope that we can harness whatever special interest or talent they have, and turn it into a independence providing, taxpaying job. Temple demonstrates all those things, and so much more.

Temple Grandin, the movie, did not touch on any of the medical issues that so many of our kids have that result in what we now call "autism," but if you are someone unfamiliar with autism, I highly recommend this movie as a good starting place for trying to develop an understanding. It's very entertaining, and for those of us who are already in the community, it's also very validating. I wish to caution the newbies, that there are much more lower degrees of functioning that what Temple displays, within the spectrum, and that autism manifests in as many different ways as there are people that have it. "If you've met one person with autism, then you've met one person with autism," is a familiar refrain to those already neck deep in it. But I think probably the most important aspect of this movie, although it touches very little on Temple's early childhood, is that, as a society, we must all presume intelligence and competence, and never give up on finding the method of learning that works for each individual.

I was very concerned with Temple's lack of friends which went largely unaddressed, as that's still a huge need for kids with autism, but certainly having a meaningful life with purpose is a very good start.

Having a Village – I’m recruiting

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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.