A new read

(Warning: Narnia spoilers in this post!)

Years ago Hans and I purchased a copy of The Complete Chronicles of Narnia. I had some knowledge of this C.S. Lewis classic but had never read it. It sat on our bookshelves until a few months ago when I read a few chapters in "The Magician's Nephew" (the first book in the series) to Jack. He thought it was too scary and we put it aside "until I am 5."

It became a joke between us; when selecting a book at bedtime I would sometimes offer Narnia and he would laugh and remind me he was not yet 5. Jack's birthday is months away and I'm bored with Fantastic Mr. Fox and Charlie and the Chocolate Factory and the Dragons of Blueland and Winnie the Pooh. In fact very especially bored with Winnie the Pooh; I'm so jaded that "the Enchanted Place" no longer has the power to make me cry. So when Hans went out of the town for the weekend recently and I had bedtime duty 3 nights in a row, I bribed Jack into reading Narnia. I offered him 5 extra minutes of Toki Tori play time for each chapter of Narnia. He went for it!

At first he complained about how much he didn't like it; that he was only listening for Toki Tori time. But then we drew near the end of "Magician's Nephew" and a curious thing happened. He started asking questions about the story. "Why is Jadis so evil?" "Why did eating the apple make her pale?" "How did Aslan die and come back to life?" And more. This is the first book we've ever read together to prompt so much thought and discourse. I'm not even sure how to answer most of the the questions, but we talk about it together and it's been a rich conversation. Sometime we will sit and read a few chapters in the middle of the day without any talk of Toki Tori time. And Aslan has been popping up in Jack's roller coaster drawings, which is a compliment of the highest order.

We've now finished the first book and started "The Lion, the Witch, and the Wardrobe." Narnia continues to prompt conversations and enchant both of us. I love the wry humor and Lewis's lovely descriptive writing. The queen is super scary! And Aslan is so powerful! I think I've found the children's book for me.

New beginnings

Jack started his new preschool this past week. It's a very small SF school which provides specialized support to kids who need help with social skills, speech, and physical issues. We supplement this afternoon program with a 2 morning a week SFUSD language and learning program.

Our new schedule means we spend a good deal of time in the car, and Jack's days are longer than he is used to. He has been tired at the end of each day, but happy. In fact, he reported "I have a friend," a girl he's been playing with at language and learning.

Yesterday Jack and I were talking casually and he said, "that was back when I didn't like myself." My heart froze for a moment as I tried and failed to rewind what he had said just before that. He didn't want to talk about that time, of not liking himself; it seemed to be something he has worked through and so does not need to be discussed further. We believe this summer was a detox for him -- whatever happened in his previous preschool was not good, and now he's better, to our immense relief.

One more thing. He doesn't pretend to be other people anymore. He's just Jack. Just the way we love him.

Our happy place

We are back from our second annual week at Camp Mather, a San Francisco-owned and run family camp in the Sierra. The camp is situated at a dusty crossroad with routes to Hetch Hetchy reservoir and through Stanislaus Forest at a bit above 4000 feet. Visitors can stay in one of 116 cabins or 20 tent sites shaded by a thin forest of ponderosa pine, cedar, and black oak. The grounds, which formerly housed workers who built Hetch Hetchy, have shared bathhouses, a dining hall (all meals are included in the fee), a small lake, pool, and general store. Ping pong tables are sprinkled throughout, as are boulders which provide endless entertainment for smaller kids. The camp runs activities such as crafts, talent shows, and family movies, so it's possible to stay busy at the camp if you like. For folks who want to roam about, it's a short drive to Yosemite Valley and Hetch Hetchy Reservoir, and there are several trailheads in a 10 mile radius, starting points for hikes in the woods or romps in the branches of the Tuolumne River.

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.

It's good to be polite

Quite suddenly Jack has become a polite child. He says please, thank you, you're welcome, bless you, pardon me, and sorry (if someone is hurt). The other night he was trying to get himself to sleep and I was in the adjoining room. I sneezed 5 times and he yelled "bless you!" from his room. He's also making an effort to use his fork while eating noodles and the like.

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!

Song request

Jack's bedtime tonight softened the edges of a rough day.
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."

One month down, two to go

We're almost through with our first month of “free summer.” Overall I think it's gone pretty well – about ½ the time I think I can make it until September!

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.

Our bedtime song

I've tried other songs at bedtime, but the only one that has stuck is Hotel California. I don't know why I picked it up in the first place -- I don't care much for the Eagles -- maybe because it is long and has elements of repetition in it, or because I can somehow remember the words. Regardless, I've been singing it to Jack since he was a baby.

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?

The end of the line

A turbulent couple of weeks led to dramatic change. We had been muddling through Jack's preschool; things weren't great, but we thought we could make it through the summer and then one last year until Jack would go to kindergarten. But after receiving some feedback from the president of the preschool (it's a coop) we decided to no longer continue there.

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)

We've been riding the emotional rollercoaster, as usual.

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.

Garden of eating circa 2010

My onions (and there are far too many of them) are not thriving. They are about to flower but the "bulbs" are just not there. They look like giant scallions. Won't try them again.

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....

Accidental discovery

We've started making Sunday evening family movie night. Usually Hans and I are quite exhausted by Sunday night and lying on the sofa for 90 minutes with Jack is a nice relaxing way to end the weekend. Also Jack's ability to watch a movie has improved to the point where sitting through a movie is now possible.

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!)

Eating air

In our house food has become the new sleep; it's Jack's current issue.

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)

Sleeping, mostly dry

There's been so much going on and it's been a while since I've written. I'm going to try to catch up one day at a time, so here it goes.

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.

Catching up

It's been a rough time. I was sick (with the flu, then a severe and tenacious sinus infection) for 2 1/2 months, which really taxed the whole family. I didn't feel like doing anything but resting, and Hans took some time off to let me do that, but he needed to be at work, so for the most part we muddled through. I was crabby and I'm sure that affected Jack. Plus I didn't have the stamina to take him to the playground or our usual haunts.

In addition, we had a really rough session with psychologist who had been (is no longer) treating Jack and advising us. Although Hans does not see it exactly as I do, I felt attacked by the doctor, who said if we had followed his advice about starting speech therapy and a hiring preschool aide for Jack 3 months ago, he would be in a much better space today. I felt particularly hurt by these comments because no one has a magic pill or treatment for spectrum issues. As parents we do our best, make decisions that feel right, learn from our mistakes, and move on. While both Hans and I do not disagree with the doctor's assessment, I feel the doctor was quite defensive and did not display appropriate empathy. We are grateful for the assistance he provided in the beginning of Jack's treatment, but believe we need to find someone familiar with spectrum therapies in our area, alternative treatments (some of which we found and are described below), and schools which might be a good fit for Jack in the future. We didn't get that from this doctor so are now searching for someone to help us in this way. The break between us and the doctor occurred at a particularly low point for Hans and I (Jack was a little freak that week) and took a while to recover from.

So I'm not sure how much of that family stress rubbed off on Jack, but he has had long stretches of oppositional behavior, whining, and general pain-in-the-assishness. I realize that parenting has its up and downs, but these downs were really quite low. This past week, though, I am feeling at about 80% health-wise and Jack has been much better. He also seems to have gone through a brain growth spurt; he is writing letters and numbers with increased confidence and skill and now reads incredibly well. Just this afternoon he insisted on reading "One Fish, Two Fish, Red Fish, Blue Fish," by himself all the way to the end, before we could leave for preschool. He sometimes reads himself to sleep at night too.

Let's catch up: I don't remember much of mid-September to mid-October I was so sick. Once I started feeling semi-human again, Jack and I had some really strong growth experiences together. One day we went to free-play at Pump It Up (an indoor inflatable bouncy house chain) and I was worried it might be overwhelming for him -- lots of kids and noisy to boot. But he loved it. We traveled down to the beach at Fitzgerald Marine Reserve a few times and although we always missed low tide, we had really peaceful and fun trips. Jack has asked for a friend from school to come over and play and each time they get together Jack is a little more social and cooperative.

Our preschool field trip to Lemos Farms (which I wrote about previously) seemed like a giant step in the right social direction. Two weeks later Halloween rolled around -- another event which was challenging last year for the whole family. This year Jack coped with a very crowded preschool Halloween party -- he didn't engage with other kids much, but he didn't get shut down either. He was excited about Halloween and trick-or-treated quite capably through our neighborhood.

Preschool has been up and down. Jack's definitely paying more attention to the other kids, but he hasn't yet figured out how to deal with angry feelings well -- we've had a few times when he's hit a kid and one (knock wood) biting episode. We've brought in an aide for him, a very nice, bright woman who we hope will assist Jack in social situations. More and more Jack is willing to play pretend games that don't (or hardly) involve letters and numbers, like donut factory -- his aide will attempt to pull kids into his activities and vice versa.

Last week we started speech therapy. His speech-language pathologist was impressed with his speech understanding and usage -- it's at about a 5 year old level (she had to stop at 5 because he was getting bored). She found his speech difficult to understand, so we'll approach therapy focusing on individual sounds and then moving on to speaking more slowly and clearly.

A class at Project Commotion is another new "therapy." This San Francisco non-profit offers martial arts, Capoeira, and "classes that incorporate movement, tumbling, sensory activities, and play," for "children with autism spectrum disorders, sensory processing disorders, cerebral palsy, and trauma." The class we take is like Acrosports for spectrum kids. Jack does find it challenging, but his instructor really knows her stuff, and I'm hopeful PC will be a good outlet for Jack's energy, as well as a safe place to explore social connections.

For fun we started swimming in one of San Francisco's warmest pools. Jack loves the warm water so much we go twice a week. It's great to have one more exercise outlet now that our pre-winter rain is starting.

Coming up: Thanksgiving. Jack is excited because he knows the time between Thanksgiving and New Years is eggnog season and he LOVES eggnog.

Pumpkin patch, one year later

There are no photos from last year's pumpkin patch field trip. I've found I don't take pictures in the midst of despair. In retrospect, it was probably one of the warnings signs for us, that Jack was different from the other kids in his preschool class. After all, there they were, jumping in the bouncy houses, petting goats, laughing.... And there we were, in extreme distress: Jack overwhelmed and shut down, me, overwhelmed and angry. Other than a quick foray into a bouncy house, Jack refused to do anything else. Reluctance morphed into tears and screaming, so we went home. He was so exhausted that he slept on the trip back from Half Moon Bay.

This year my expectations were low. Two days after an extremely windy rain storm, the day was warm and sunny. I hoped for a pleasant drive to the pumpkin patch, a quick tour through the pumpkins before Jack got overwhelmed and we headed home. It didn't turn out that way.

Maybe because of the recent storm, the patch wasn't packed with preschoolers. There was a pleasant amount of pumpkin pickers and lots of buddies from preschool. Almost immediately Jack asked to ride the "train" (an engine pulling faux train cars) and we did to his delight. Then he bounced in the bouncy houses. I asked him if he wanted to watch the ponies. When we got there he said, "I want to ride one!" He stood in line patiently, tolerated being lifted up and placed on the pony, and rode contentedly. I watched in delight, nearly crying, as he reached down to the pony and gently pet him. "Soft!" he said.

After another train ride and a second pony ride, we gathered with the other preschool families for lemonade and cookies. Then a quick group portrait and it was time to go home, pumpkins in hand. When we were getting in the car Jack said, "mommy, can we come back here again?" I said yes, asked him what he liked best. With a sweet smile on his face he answered, "riding the ponies."

I know he's not "cured." We struggle on a daily basis. But our pumpkin patch visit was a wonderful gift, perhaps a glimpse into the future, to a time where Jack will continue to embrace new experiences with joy. A future full of ponies; who can argue with that.

In the blink of an eye, a month goes by

We were on vacation: one week at home, then one week at Camp Mather (bliss).
Jack went back to preschool after the summer break.
We took a quick Labor Day weekend trip to Louisiana.
We came back and 2 of us (the oldest 2) got very sick with the flu.
Just now digging out. Everyone is mostly healthy, although I am still coughing.

I hope to write something next week.

Two sweet things that make me smile

Jack says:
An animal active at night is nocturtle
The county south of San Francisco is San Matato

Carrot bread for preschool snack

This has been a big hit at Jack's preschool. It's easily doubled.

Carrot bread
4 ounces (3/4 cup) unbleached all-purpose flour
4 1/4 ounces (3/4 cup) white whole wheat flour
1/2 Tablespoon baking powder
1/2 teaspoon baking soda
1/2 teaspoon salt
2 teaspoons cinnamon
3 large eggs
1/2 cup canola oil
5 1/4 ounces (3/4 cup) turbinado sugar (or regular granulated)
12 ounces (3 1/2 cups) peeled grated carrots (shred them with a food processor if you have one)

1. Preheat the oven to 350 degrees. Lightly oil a loaf pan.
2. In a medium bowl, mix together the flours, baking powder, baking soda, salt, and cinnamon. In a mixer bowl, combine the eggs, sugar, and oil. Mix to combine, then add the flour mixture and beat on low until incorporated. Add the carrots and stir one more time. Remove the bowl from the mixer and stir by hand to incorporate the carrots.
3. Spoon the batter into the pan and bake about 1 hour. A toothpick inserted into the center should come out clean when done.
4. Let cool on a rack about 15 minutes. Unmold and cool completely. When the bread is cool, wrap in plastic wrap overnight.

Work=change and change is good

Vestibular, proprioceptive, sensory integration, crossing midline, pincer grasp, motor planning... all big words pertaining to therapies for Jack. Although the words are intimidating, thankfully the "work" is not, because it's all play-based. Here are some of the strategies we're implementing for his autism:

Playgroups: At least once a week either Hans or I take Jack to a professional supervised therapy playgroup with other autistic kids. These playgroups are always an interesting and unpredictable mix of personalities and autistic traits: some kids are overreactive, some underreactive, some respond to stress by flicking the lightswitch up and down or slamming doors, some by seeming to go to sleep. It's sometimes tricky to get these kids to interact, but when they do we've witnessed some good social growth.

Occupational/sensory therapy: Our home-based work can be just about anything -- on a daily basis Jack manipulates playdough, moonsand, laces with string, builds with blocks and legos and train tracks. These assist with fine motor control. Outside he plays with the hose, draws letters and numbers with chalk, blows and pops bubbles. These two books (Starting Sensory Integration Therapy and The Out-of-Sync Child Has Fun) have lots and lots of new ideas we'll be trying in the coming weeks, like bean bag tossing, pounding with hammer and nails, playing with shaving cream, balancing on a wobbly beam... enough ideas for months.

Motor planning (and self esteem): our best therapy is bike riding. Jack is so good at it and enjoys it greatly. We do it every day, for miles at a time. We're pondering purchasing a full-size trampoline; they are pricey but I think he would get a lot out of it (and I've always wanted one).

Soon we'll be starting speech therapy, floortime work with a home helper, and occupational therapy with an expert, so we'll get lots of new ideas.

It's hard to believe that we've only been working on his issues for less than three months (I had to double check the calendar because I didn't believe it myself). How has Jack changed?

In early May, when Jack would come home from preschool, we'd ask him about his day. What did he eat for snack? Who were his teachers? What did he do? He would answer each question the same way, "I don't know." We were at the playground one day and three of his classmates were swinging a few feet away. "Who are those buddies?" I asked Jack. Same answer, "I don't know." Virtually all he would talk about was numbers. He had a "hand clock" -- his two hands would make number shapes and he would hold them up in front of his face and count. Constantly. His favored toys were numbers from a puzzle.

Two months later, Jack sits at the dinner table and tells us a few details about school -- maybe one child he remembers having snack with, a project he did with a teacher (whom he will often remember by name), and what food was tasty for snack. On a day after playgroup he will spell a child's name with letters in the bathtub. We haven't seen the handclock in weeks. He does still fixate on numbers, particularly when stressed and at the end of the day, but Jack now has the capacity to talk about other subjects, spontaneously show interesting things to us, and bring a toy for admiration to a visiting adult at home. Instead of playing exclusively with numbers, he plays with just about everything. His old show-and-tell standbys, the number puzzle pieces, have been replaced with a favorite book, one of his nuts and bolts, a small car, plastic animal, etc. While in the past he would most often relate to his numbers as if they were people, he's now moving through an obsession with babies. I can see this drifting toward a better understanding and acceptance of kids as playmates. It's coming, I'm sure of it.

In May, conversations were fragmented and illogical. When asked why, he would be unable to respond, or would say, "that's just the way it works." Now Jack can often respond with reasonable logic. He can now accurately recount the details of a bicycling adventure or explain how an argument started and was resolved.

Jack's sensory awareness has grown. He was previously underreactive -- I'm convinced that's why we've had so many problems with potty training (it's getting better, but most of the time he's still not aware when he needs to go). Now he wanders into the kitchen and says, "I smell something yummy." We have some work to do with his sense of touch, but overall he's more sensory aware.

Only one month ago, when asked to draw a circle he would switch the crayon from one had to the other; now he uses only one hand (usually the left) to complete circles, and is willing to cross midline (this helps to establish the dominant hand and is important for beginning writing).

He can and will throw epic tantrums when he doesn't get his way. But he's learning that a stack of blocks that gets knocked over can be fixed. One favored toy can be shared back and forth with a preschool buddy (he did this yesterday and I thought I would fall over -- He and a friend from school were both grabbing for the bubble bear at the same time and Jack said, "we can take turns."!).

I think his biggest improvement is eye contact. A few months ago he would not look at us unless we begged him to. Then eye contact was brief and perfunctory. Now he looks at everyone and has learned the joys of nonverbal communication -- his eyes sparkle again like they did when he was a baby. When he is fully absorbed in play it can be difficult for him to break away and make eye contact, but overall he is much better.

We still have a lot of work ahead of us. Jack's empathy is not great and this can lead to big blow ups between us, like the other day when I badly cut my finger and stumbled around looking for something to staunch the blood flow while Jack screamed about wanting cherries and needing me to count to 9 RIGHT NOW. Less than ideal.

He is creatively mischievous and tests boundaries constantly. His top trick last week was to remove the running hose from the splash pool and place it inside the house, flooding the bedroom. That was not a fun afternoon. Both at home and school he seems compelled to rather violently dump stuff and then is never willing to pick anything back up. Perhaps encouraging more structured dumping (a small backyard sandbox?) will lessen the impulsive dumps. I have to remember that emotionally he is lagging behind a bit, and also that a little misbehaving is not the end of the world.

We love him deeply and are so happy that the work we've started is already helping. Onward!

All mixed up

Jack has mostly moved beyond individual foods kept apart. He drove right in to his first burrito (filled with tofu, his choice) and also will eat small bites of chicken shawarma.

As part of our "reward good behavior" plan he's been getting Joe-Joe's (Trader Joe's oreo knockoff) every once in awhile. Hans and I both noticed that the very first time he got one he immediately twisted the cookie apart and ate the filling. When we showed him he could dip the cookie in milk he got even happier.

His favorite beverage these days is half soy milk half juice. He giggles when he drinks it.