Thursday, September 23, 2010
Saturday, September 11, 2010
Wednesday, August 25, 2010
Our Camp Mather vacation planning started way back in the early months of this year, as we opted into the annual lottery for San Francisco residents. In spring we learned we did not get a spot, and were very far down the waitlist. But, just like last year, at the beginning of August our number came up and off we went.
We loved this year's cabin, which was a well-shaded single on the lake side. Last year's cabin (aka the split hot box) received sun throughout the day, so it was super hot at night. It also shared a wall with another cabin, and the noise was very bad at night (we never met the other family but their kids went to “bed” quite late).
Our days were pretty lazy, and started with a cozy family snuggle. We rode our bikes to breakfast at the dining hall, then hung around our cabin (stomp rocketing was a hit) until the pool opened, which as the week progressed became more and more Jack's focus. One morning was reserved for our annual Hetch Hetchy hike. Our goal is to hike a bit further each year; mission accomplished, but we still haven't made it very far. We didn't reach the junction with the trail climbing up to the north; not only was it hot, but smoke from two nearby fires made the heat feel quite oppressive. I do love the view along the reservoir, but this hike is one of my least favorite in the Sierra. I shudder crossing the damn dam (fear of heights) and then again going through the tunnel (to quote Ponyo – “don't like this place”). But a visit to Hetch Hetchy is part of our family tradition now and we all enjoy the drive.
Another morning we drove north to Cherry Lake, with mixed results. It's a gorgeous drive on a road that dips down to cross the Tuolumne before climbing through chaparral and conifers to... well there's a lake here, but how to get to it? We found the boat ramp and a very nice (albeit lonely) campground, but no signed day-use access, no little store, nothing. When we got back to Mather I scanned the map more carefully (which I should have done prior to the trip), noticing too late that the road only runs around the lower part of the lake (actually a reservoir) before heading out on gravel east toward Lake Eleanor; the other end of the road sweeps off to the west to CA108. The later route showed promise for a fun motorcycle ride sometime in the future, but I wouldn't make the trip to Cherry Lake again. Next year we'll zip down to Yosemite Valley instead.
At camp if we weren't splashing in the pool we ignored all the other options – the small old school playground, arts and crafts programs, shirt tie-dieing, volleyball, archery, nature walks and the like. A few times we floated around the lake in our inflatable boat, and Hans and I took turns hanging out with Jack so each of us could have short breaks to read, swim, etc. But really it was all about the pool for Jack.
For the first few days Jack floated around the pool inside a star-shaped inflatable but when it sprang an unfix able leak (and the store was out of new ones) he adapted to the lack of a floaty without fuss or fear. He took the preschool swimming lesson 3 days, and when his teacher suggested he was ready for the beginning class (for 5 year olds), he elected to try it on the last day. The teacher was mediocre and he had a tough time understanding her instruction, but he showed so much determination it was really emotional to watch. Overall the week built a strong base for swim lessons here in SF, so we're on the hunt for a good pool and a patient teacher.
We had a blast with our made-up game, “torpedo snatch” – using the super fun toypedo. Hans and I swept it back and forth just under the surface of the water while Jack tried to intercept it. When he did get it he would giggle madly and attempt to toss it over the ropes into the deeper part of the pool. Then it was our job to dive under and retrieve it. The game was so infectious that by the last day other kids were asking to get in on the fun.
It was an awesome week – from the coyotes singing the camp good morning to the incredible stars at night. We can't wait for next year!
Some tips for Mather beginners:
The cabins are rustic for sure. Just beds, a dresser, closet, and bookshelf (if you're lucky). Picnic table out front. Yes, there is electricity.
Mule rides (and every other pony/mule/horse option) sold out almost immediately; next year we will reserve a spot at the corral upon arrival.
If you are sensitive to altitude changes, take it easy the first day. Last year I took the swim test (a swim out to the lake dock and back and then treading water) the afternoon of our arrival, and was surprised how winded I felt. This year I waited until the second day and had an easier time.
If you have a choice of dates, the camp is hotter and the mosquitoes are more common early in the season. We have found the last few weeks of camp (in August) to be a perfect combination of weather and fewer bugs. It's also easiest to get a reservation when SFUSD schools are in session.
The food is good! If you have a picky eater note that peanut butter and jelly and cereal are available at every meal. Breakfasts alternates between eggs, pancakes, and hot cereals, with fruit available each morning. Lunches are simple – most campers opt to order a bag lunch at dinner for the next day – choose pbj, turkey, roast beef, or a veggie option. Each lunch comes with fruit, chips, and a cookie. During our week we enjoyed fish, pasta with meat sauce, tacos, eggplant parm, turkey dinner, bbq chicken, and bbq tri-tip for dinner. Desserts were tasty too, and included orange cake, pies, ice cream, and chocolate cake. Alcohol is permitted in the camp, and many parents tote a bottle of wine or beers for dinner. A week without cooking is a huge vacation for me – no shopping, preparing, or cleaning... I loved it.
Watch out for bears. We actually saw a young bear in camp during the afternoon one day – an uncommon occurrence. Bears do make appearances at night, so keep the area around your cabin secure, with all food inside. Squirrels also will try to invade your cabin/picnic table. Keep the door closed when you're not within the immediate area.
Cabins lock from the inside, and if you bring a padlock you can lock your cabin when you're away. However, safety is not much of an issue in the camp. Hans came up with this brilliant idea -- we wrote our lock combination on our camp wristbands with a sharpie. Camp staff advises that inflatables left at the lake be locked at night – must be a safety issue? A thin bicycle-type cable lock works well for this.
Bring more towels than you think you might need, or a clothesline to dry them.
There are washers and dryers if you need them.
There is one bathtub in the whole camp – in the women's side of bathhouse A.
Everyone rides bikes everywhere. Make sure your kids have helmets and wear them every time they ride their bikes. There are not a lot of rules at Camp Mather, but staff is really serious about the helmet issue.
Cell phone reception is non-existent. I tested out the reception on the way back and found no coverage at all until we reached Priest; even then reception was spotty until the bottom of the grade. I heard Evergreen Lodge (just a mile from camp) has wi-fi if you're desperate for email.
From the Mather website: “call Camp Mather directly, 209-379-2284, Thursday nights to see if there are any last minute vacancies for the following week. Mather Manager, Claudia Reinhart, offers available reservations from last minute cancellations on a first come first served basis at camp.”
Christmas lights are traditional – we used one set to decorate the outside of the cabin and one set inside as a nightlight.
More tips here.
Tuesday, July 27, 2010
The two of us have been hiking (here he is in the photo thinking about Winnie the Pooh near a clump of gorse bush at San Bruno) nearly every week, going to various city playgrounds daily, and Hans has taken Jack out for weekend jaunts to Fairyland, the Oakland Zoo, and Great America. Jack loved GA, especially the water rides -- we'll be back. At Fairyland he made a friend and together the two of them rode the carousel, the Jolly Trolley, and the Dragon Slide. He told me later that he kissed his new friend! Unfortunately this girl lives in the east bay, but it was great he was able to stretch his social skills. Yesterday at the playground with a little prompting Jack asked a girl to bounce with him. He's making great strides here!
About a month ago I took him to a PT for an evaluation. She found him to have "weakness in his proximal musculature." To help him with this we will continue to hike and bike, plus get him swimming, and work on increasing his core strength. The PT also recommended increased "heavy work" and physical activity -- Jack loves jumping into cushions and when Hans comes home he has been asking to "rassle." Since we've been presenting him with situations where his body gets increased sensory feedback I think he is slightly less "bouncy" and more calm.
One big bummer that became a great teachable moment -- Jack ran away from Hans when they were out biking at a campus near our house. Hans called me and I came running to help. I found Jack's bike but no Jack and I was terrified he'd been snatched (illogical I know, but this was my greatest fear). Turned out he rode his bike down the hill from where Hans was, but then decided to walk back up to where he had "lost" Hans. A helpful maintenance worker found him and was taking him back to the school's maintenance office. By that time the police had arrived (thank you Google voice for helping me find the local police phone number while I was running around searching) and when we got back down the hill Jack was sitting in the front seat of a police car. (He said later he liked that because inside the car there were lots of numbers.) We made our way back home as calmly as possible and got Jack to sleep. The next day we sat him down and talked about what to do if he got lost again -- not to get in a car with someone he doesn't know well, not to run off, etc. Since then he has been awesome and I've tested the waters by leaving him just outside the bathrooms at Golden Gate Park and Limantour Beach and he's done totally fine. He seems to really get this lesson -- I hope so because my blood pressure was insane for hours after he was lost!
Saturday, July 3, 2010
He asked me to sing "Per Majedy." I didn't know what he meant.
He said, "it's really short."
"Can you sing it for me?" I asked
And this is what he sang:
"Per Majedy's a pretty nice girl,
but she doesn't have a lot to say
Per Majedy's a pretty nice girl
but she changes from day to day
I want to tell her that I love her a lot
But I gotta get a belly full of wine
Per Majedy's a pretty nice girl
Someday I'm going to make her mine, oh yeah,
Someday I'm going to make her mine."
Monday, June 28, 2010
We started the month out with a trip to Legoland that went much better than we anticipated. The drive was long, and we got stuck in LA traffic both times, but Jack did great in the car and once we arrived at our Carlsbad hotel we had a nice, peaceful stay. From our hotel we could see the entrance gates of LL, so we were able to walk there. The hotel was great – nice pool, clean room, and exceptionally quiet – the only complaint I had about it was the relentless sales pressure to attend a condo sales pitch. A brewpub-themed restaurant on site provided us with room service breakfast (heavenly) and yummy take-out dinners, with take-away jars of beers we drained each night.
LL itself was not super crowded. We were able to make our way through the entire park by the end of the second day. Jack and Hans rode each roller coaster, even waiting more than ½ hour for the big scary blue one. The weather was quite cold the first day but even so Jack wanted to spend most of the day at the (brand new) water park. We shivered much less the second day and splashed for hours. The three of us went down “Orange Rush,” kind of a rafting/waterslide combo, floated on tubes on the “river,” and Jack loved the smaller water slides. We attempted the big blue waterslide, but Jack decided at the top that it was too scary. Luckily the staff let Hans and Jack switch over to Orange Rush. Jack really loved anything related to water the most – every time we passed through the water works area of Duplo Village he immediately ran to the attraction where the water squirted up from the ground.
We were at the LL gates at 10 both mornings and left when they closed the park. At the end of the day we were all tired, but Jack kept to his same (torturing his parents) sleep schedule, falling asleep at 8:30 or 9. He slept fine through the nights and woke up ready to go.
As soon as we got back home from our trip he stopped wetting the bed at night. In fact, I'm going to go out on a limb and declare him potty trained. I rarely remind him to go during the day and he's been dry every night but one now for more than 2 weeks. He still does need encouragement to poop, but when he shows signs of readiness, he'll sit with the ipod on his lap and play a game or fiddle with the timer/stopwatch until he is successful. This is a huge milestone for all of us. It's a big boost for his self-esteem and lightens the household work load considerably.
Jack is still struggling with his identity; most of the time he says he is someone else. He is pretty good-natured about it and expresses his identity preference in a light-hearted way most of the time. One morning last week when I picked him up from his speech group he said he was Jack until the very end, and then he became Becky. I asked him why and he said, “because I wasn't sure if everyone liked me.” I was stunned at the level of his self-awareness. Even though we talk about feelings and work to promote his self-esteem, we haven't been able to get him to be Jack all the time. It's a work in progress.
Hans and Jack are continuing to bike most mornings, and Jack and I are beginning to hike together on free mornings and afternoons. On a San Bruno hike last week he expressed fear about wild animals; I was glad he could share his feelings so we could address that. We've gone to Windy Hill twice and that preserve agrees with him, so I hope to increase our mileage and build his endurance with repeat visits. He seems to prefer grassy fire roads rather than wooded paths, so that's a challenge for me to find the perfect parks and preserves.
Otherwise we've been making mud in the back yard, building with legos and magnatiles, painting, watching movies, and playing Treasure Madness together. The ipod has become an important item, because Hans found some wonderful games and Jack will play them by himself (which is a first – usually he wants us to play them for him while he watches). He'll also work on an activity book, dot-to-dot, or coloring book while I make dinner, another wonderful thing.
We had a PT evaluation last week (more on that soon) and have settled on a preschool for autumn. We hope to combine a 4 afternoon-a-week preschool program with SFUSD's Language and Learning 2 or 3 mornings a week. Both preschool and L&L focus on social skills and speech, Jack's 2 biggest issues.
Now if we could just get him to sleep. Actually he does sleep for an average of 10-11 hours a night, which is almost enough, but he will not go to sleep early. It's 9, 9, 9 every night. Even when he has a terrible night sleep he will not go to sleep early the next night. I'd love to figure out a way to get him to sleep earlier. The PT suggested vigorous exercise immediately before bed, and we've been “getting the wiggles out,” without any change.
Wednesday, June 16, 2010
The song is actually quite adaptable to variation. I simply replace about half the nouns with other words, keeping to a theme. One of Jack's favorites is preschool buddy California -- with the nouns replaced with the kids from his (now former) preschool class. A few nights ago I did a Legloland California version that was smashing.
Last night we did 3 versions: preschool buddy, Legoland, and regular (original). Jack interrupted me to ask, "what exactly is colitas anyway?" (pause) I answered, "it's a plant and sometimes people like to burn it," (not a lie!). He was satisfied.
I think I need another rambling song for bedtime... any suggestions?
Friday, June 11, 2010
The information she passed along was vague: some parents had shared (not to us) that their children were scared by Jack – that he might hurt them. This was a surprise. I had seen Jack lightly push kids at school and struggle not to hit when angry, but we do not see our son as a violent, out-of-control kid. I figured I could see this one of two ways: either the parents (and/or kids) were overreacting, or Jack was so stressed out at school that he was acting uncharacteristically violent. Neither scenario was pleasant. I truly do not want any kid to feel scared by my son. But since the preschool is a coop, I (wrongly) assumed that any issues would be handled in an open way. To be blindsided by parents preferring to complain anonymously, rather than directly addressing issues that we could work on, felt unfair. To compound things, we also learned (for the first time) that the director had been keeping a record of all Jack's infractions in a notebook. Ick.
Our hearts were heavy but we decided to remove Jack from this preschool. I respect and enjoy many of the parents there, but our constant battles with Jack's program director and then this recent news made us feel it was time to find a place where the staff and parents understand (or are willing to learn about) the challenges of Asperger's.
For the summer, Jack will be home with me and his aide C will be providing home intervention. My goal is to lighten Jack's stress load while providing opportunities for social interactions in a controlled setting. Several families asked for play dates and that'll be great. We're also signed up for a language-based social group at our wonderful speech provider. I hope to keep him busy physically with hiking, biking, and playground visits. We'll do loads of fine motor activities and have the freedom to go and do what we want most of the time.
For autumn, we're mildly panicked about finding a preschool. Some possibilities are percolating, but we don't have anything firmed up.
I am grateful to those parents who have shown generosity, kindness, and love to Jack and us. I wonder about those parents who lacked the courage to share their negative feelings about Jack face to face. It's my opinion that those parents are teaching their children to avoid conflict, to undermine relationships, and to fear and avoid others who are different.
In the words of Liane Holliday Willey, an adult woman with Asperger's: “I do not wish for a cure to Asperger's Syndrome. What I wish is for a cure for the common ill that pervades too many lives; the ill that makes people compare themselves to a normal that is measured in terms of perfect and absolute standards, most of which are impossible for anyone to reach.”
(photos: Jack's first day of school on September 4, 2008, and two from his last day)
Saturday, May 8, 2010
We all suffer when Jack doesn't get enough sleep. He is crabby, prone to tantrums, uncooperative, and impulsive. We get run down by the effort required to get him dressed, fed, to the potty, school, etc. His sleep has shifted to a much later start time, usually 9, and after battling for almost a week trying to get him to put himself to sleep, we've gone back to staying with him until he is asleep (or almost). Not fun because by the time he's asleep I follow about ½ hour later, but at least Jack's been sleeping 10-11 hours; his overall well being is much improved with all that sleep.
At school there are some subtle improvements probably only visible to us and C, his aide. He is way more able to share space with the other kids and play, really play, with a few of them. We see that outside in the play yard he can get overwhelmed by the chaos and that's when he tends to throw his shoes over the fence, dump sand where he shouldn't, or other inappropriate actions. Our task here is to encourage greater self-awareness; to help him realize that sometimes he needs to take a break and calm down when things feel too crazy , and to realize that before he reaches the out-of-control state.
For the past month or so Jack's been exploring issues of identity and emotions. He often identifies himself as either Becky (from the “Wordgirl” show), Boris (a baby dragon), Rainbow (whom we know nothing about except he is 20 years ago), Jumping Jack Flash, or a combination of the these. Initially I think it was a way of compartmentalizing his feelings; one person for sadness, one for anger, etc. When he would assume an identity he would also say, “Jack is dead,” or “Jack is never coming back,” which really drove us crazy. We've tried a few different ways of dealing with this. One is just ignoring it, which sometimes works except sometimes Jack gets adamant about being whomever and will not engage as Jack. We've tried to engage the other character to see what the underlying feelings are. We've tried explaining that the other people are really just feelings – that he can have Becky feelings, or Boris feelings, but he's still Jack. Nothing seems to work so we're hoping it will run its course. What is obvious is this is not a case of Jack trying to provoke us – he gets no pleasure from this. It's serious to him. I know NT kids pretend to be other creatures too, but I haven't read much about spectrum kids doing this. Would love some advice from other parents here.
The struggle could also relate to Jack's marked improvement in theory of mind. Here's a nice definition from Wikipedia: “Theory of mind is the ability to attribute mental states – beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires and intentions that are different from one's own.” TOM is a struggle for spectrum kids, and Jack is no exception. But in the past month there's been a shift. He notices when I am upset or sad and will say “cheer up,” or (the big kicker) “I love you,” because that always makes me smile. Yesterday he was playing with his trains and I heard him say softly under his breath to his train, “are you scared?” And then reply, for the train, “no, I'm not scared.” This is a first, and a huge growth step.
He continues to impress us with his intelligence and problem solving. Lego kits are a new love. He likes to paint, do play-doh, color with pastels, do mazes, make mud in the backyard, play bingo, assemble train tracks, and read. After showing no interest for a few months, he's back bike riding again, although he still won't ride his “big boy bike,” only the like-a-bike. When we're stuck in a long line at the grocery he will often ask to play Doodle Buddy on my iphone, but we have to watch him like a hawk when he has it, since he is able to navigate to other options. Last week he was about 5 seconds from setting up a Twitter account – no joke, he had his password typed in and everything. We watch a family movie together Sunday nights and he prefers “Monsters Inc.” (us too) and “Sword in the Stone,” because he loves Merlin. We bought a new family tent last weekend and are looking forward to camping together for the first time (we were hideously wait listed for Camp Mather).
Life continues to expand; I think we have a little more breathing room. Things aren't easy, but we just keep trying.
Sunday, April 4, 2010
Lots of potatoes are doing great, and check out the kale! I forgot what it was and kept thinking it was cabbage that hadn't headed yet. Using these greens quite a lot in soups. I haven't checked the garlic so that's still a question mark.
I'm out of pots and dirt, but the way the onions are (not) growing, I think I'll yank them up, maybe cook a bunch of green onion pancakes, and plant more lettuces, beets, and carrots in their places. And I need to find some time to start my tomato seeds....
Tuesday, March 30, 2010
Our first movie was Pony0. Wonderful! This past Sunday we tried Cars and I wasn't digging it, but Jack promptly fell asleep watching it, at the early hour of 6:45. We plunked him down in bed and he slept for 12 hours. So last night (this is spring break week and every night feels like Sunday night) we decided to try a movie again, this time Iron Giant (yeah -- love this one). We watched until 6:30 and then decided to watch the rest later. Jack and I read until 7 and he fell asleep around 7:45. He slept this morning until 6:30.
Is this a new sleep pattern? Wow, I hope so. He had been going to sleep at 8:30 and getting up at 6 or 6:30. Watching a movie together seems to really calm him down and get him ready for bed.
(Check out his kite flying technique in the photo!)
Tuesday, March 9, 2010
In the past he was a great eater, but these days the list of foods he will willingly consume is shrinking. Fruit remains a favorite, and Jack loves just about every kind, including blueberries, apples, oranges, pineapple, bananas, mango, grapes, nectarines, and melons. He's pretty flexible about carbs, and likes pasta, crackers, pita bread, waffles, pancakes, bread, and (fortunately) almost any kind of meal or grain blend (particularly oatmeal). Thankfully he eats beets, red peppers, cucumbers, and tomatoes, but not much else veggie-wise (and some of those items are technically fruits). When meat, chicken, pork, or fish grace the table, he turns up his nose. Beef in particular is unloved -- he says it looks, smells, and taste bad to him. I've tried fish sticks and plain fish and he'll eat neither. Sometimes he'll eat homemade chicken nuggets but not always. Rice and beans, hummus (from Good Frickin Chicken only) is ok and tofu tolerated when served as Chinese noodles (Hans' speciality). That leaves the old reliable bacon and sometimes ham. Peanut butter used to be a staple but he's been asking for tiny amounts mixed with jelly on his toast. When it comes to milk he's still flexible about that, and is happy with cow, soy, or almond.
I have been worried about him not getting enough protein, but when I did some research I found that his diet is adequate. The amount of protein suggested for kids 4-8 is about 24 grams a day. He can get his daily need by consuming 2 cups of soy milk (14 grams), 1 cup oatmeal (6 grams), and 1 cup pasta (7 grams). Since his baseline is at least that and sometimes more with the addition of nuts and other protein sources, I'm not going to worry about it any longer.
We're trying to be low-key about his food proclivities, to avoid eating from becoming a power struggle. We keep offering him healthy choices, encourage his to try new foods, and praise good habits. Maybe it's typical, but I know if Jack had his druthers he would eat chocolate, candy, and cake all day long. We don't have dessert at our house very often, mostly because when Jack eats a bunch of sugar he has a hard time limiting his consumption. Although we are firm with his limits here, he constantly begs and whines for more. I'd love to hear from other parents about how they manage their kids' diets and desire for sugar.
(photo is Jack eating bacon with his cousin Allison back in September)
Tuesday, February 2, 2010
In late December, Jack decided he was ready to stop wearing overnight diapers. We followed his cue, gave away the last 1/2 bag of diapers, and bought some waterproof mattress pads. At first we tried waking him up around 11 for a pee, and some nights that worked, while others he was unable to wake up enough to do it. We stopped trying that, since even when he was able to pee in the potty at 11 he sometimes peed in his bed later on. Some nights he peed in bed twice, so we came up with a stackable system, with a mattress pad, a sheet, another mattress pad, and another sheet -- when he pees we come in and change him and peel one layer off the bed. After a month and a half he's making good progress, keeping dry overnight more than 1/2 the time while becoming more responsible for his toileting during daytime hours.
At the same time, Jack's sleep has improved. Kids in the autistic spectrum are notoriously poor sleepers and have trouble getting to sleep, staying asleep, and getting enough sleep. We see a huge difference when Jack gets a good night sleep: better concentration, cooperation, and energy, with less whining and tantrums. Lately he's been averaging more than 10 hours a night and sometimes slumbering up to 12 hours. His sleep makes a huge difference for all of us and we hope this is a permanent improvement.