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.
Wednesday, July 23, 2008
Saturday, July 19, 2008
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.
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.
Thursday, June 19, 2008
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.
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.
Tuesday, June 3, 2008
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 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.
Wednesday, May 28, 2008
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.
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.
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