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)