Just what we needed

Who knew? An older brother is the greatest thing since sliced gluten free bread! He catches up with B when he bolts, puts his arm over A's shoulder so he doesn't lag behind, cleans up after himself, and gets us up to date on the latest technology. It's the greatest!

We went bowling today. We all really suck, but we had a great time. B only bolted down the alley once.

Yesterday we rode the commuter train. Pretty exciting! To the shopping center and back. Lunch at the burger joint. A and B remarkabley well behaved!

Update

No worries. What a sweetheart! Happy, helpful, extremely polite. Enjoying his brothers. Very very nice.

crash course: teenage boys

My stepson is arriving in a couple of hours. He caught a ride with Santa, arriving on the midnight express from Brazil. Well, not quite express, he'll have been traveling for about 24 hours by the time he gets here. I'm trying to remember all the reasons why I thought this was a really good idea.

What do you do with a teenage boy, anyway?

solstice

Tomorrow is the winter solstice. My meditation instructor explained that the solstice is an excellent time for meditating, it can be very powerful and transformative.

high speed

i've finally come out of the dark ages, or rather slow ages, and now have high speed internet. After being offline for a week or 2 at home, it is both nice to be back online and yet at the same time it was really nice to take a break from my computer addiction, actually read a book with a binding, light candles, talk to my partner..... hmmm....

Giving Thanks

I have much to be grateful for.
Tops on my list this week are:
* my partner, who loves me
* a sitter to cover the hours I was running home from work to meet the kids getting off the bus, and sometimes was late (sorry MB, I know that means S is even later, but really, it's not usually my fault!)
* the ability to put nutritious food on our table
* my beautiful children, who try really hard (today B tried really hard to put his foot in the toilet bowl. I guess there are different ways to measure success)

47 days from now

please remind me of my New Years Resolution:

In 2008, I will learn to ask for HELP.

memory

I find that I'm losing my memory much faster than I'd like to. I have to remember to do something about this.

chicle

This weekend B discovered chewing gum. And loved it.

Vote for Dave!

Update: Dave won!

One Day

I want to experience one full day of no worry and no stress. Spend 24 glorious hours living totally in the present moment and being happy. Think it's possible?

IEP Blues

Today I found out that tomorrow morning, in addition to B's trienniel iep, we will ALSO be holding his annual iep to define new goals and objectives and services. And I'll be damned if I can find that little piece of paper "inviting" me to participate in the meeting to see what was checked off. Just when I thought I had enough stress going on this week.

Ups and Downs

I've gotten into a weird habit of thinking about my life as a blog entry. Here's the entry I was thinking about writing last weekend, while/instead of actually living my life:
UP: I was able to take both boys on their bikes to the school playground. A did an excellent job staying with me, waiting, not crossing the street without me, and stopping as I stayed VERY close to B.
DOWN: Shortly after we arrived at the school playground, B threw his shoe (up) over the fence, where it fell (down) into the neighbors' back yard. I make B ride his bike home with only one shoe on, while I hold onto the back of his shirt because I no longer trust him to listen to me at all.
UP: Luckily, A continues to listen, wait and stay with me.
Then I dump the kids back home, wake T from a (very brief) nap, and drive back to the school to try to figure out where B's shoe is. I really don't want to lose this shoe because another shoe (from a different pair) is still waiting on his school roof (where B threw it last week) until the janitor has a chance to climb up there and retrieve it (along with all the other things, including a watering can, that B has thrown up there). So I drive around the block of mansions (literally mansions) and finally figure out which one probably belongs to the backyard where I think the shoe landed. The door bell is located outside a wrought iron gate, attached to a speaker system that calls into the house. Thankfully I see some children's toys in the yard and am hopeful that an understanding mom opens the door. Not the case, but a handsome and extremely nice man instructs me to go around to the side gate that I can open and look for the shoe. He comes out in his PJs to help me look, casually explaining that he was watching football and not to worry. We chat a bit as we hunt through his backyard for the shoe, which is camaflage green in color. Eventually he finds it and I'm on my way.

I decide to take just A with me so he can finish enjoying his bike ride, because I want to reinforce his positive behavior and let B understand the consequence of his actions. And because I need a break from B.

UP: A and I head to the office park by the bay. This is one of the places where I take the boys when I'm alone with them and need to get out of the house. They don't necessarily behave here, but there are usually so few people around that it doesn't matter as much. A is really happy to be here. He hops on his bike and takes off along the path. I walk behind, keeping an eye on him. He gets to the first circle, and comes back towards me. Good, I think, he understands that he needs to stay close enough to me so I can see him, and he understands that he may need to backtrack if I start lagging behind. "Let's go down to the next circle" I say to him.

DOWN: A heads down the path, but DOESN'T turn into the next circle, like I expected him to, and like we usually do when we are all on foot. HE KEEPS GOING. At this point, I this point I start calling his name loudly, but he is too far ahead and doesn't hear. I start running. A is fast on his bike, and the distance between us continues to grow. I shout out, but he doesn't hear me. I lose sight of him. I panic. I run out of breath and have to stop running. I ask passersby, "Have you seen a little boy on a bike go by?!?" They say say, and indicate that he headed further down the path. I catch my breath and start off at a run again. I think I see his pale yellow shirt ahead in the distance. I cup my hands and yell as loud as I can. No response. The wind carries my voice across the salt flats. The pale yellow dot goes around the bend and I lose visual contact again. I ask more dog-walkers if they've seen a little boy on a bike. Yeah, about 5 minutes ago he went that way. Couldn't be that long ago, could it? I panic more, and try to run faster. I can't run any faster. I can't see my kid. I try to make up time/distance by cutting through the parking lot. I panic even more, as I realize he might stay on the sidewalk and head down towards the freeway. I ask the guy on rollerblades if he saw a little boy on a bike, with a red helmet. "What?" he replies. I panic more, I am losing time, I can't see my son, which way did he go?!? I run more, in a seemingly random direction. I think I glimpse his shirt way down the path. I pant as I ask another stranger if he's seen my son, and keep running, and keep yelling. I'm totally out of breath. I hope he stops when he gets back to the bay. OMG what if he goes into the bay>!>! He won't go into the bay, we come here fairly often and he's never gone into the bay, he'll stop at the car, he'll stop back at the first circle, shit, I don't see him. I ask the folks who are fishing if they've seen a little boy on a bike. The girl says, "yes, he went by half an hour ago with a big smile on his face." My voice gets a high pitched nervous edge to it, "Half an hour? When I was with him? Have you seen him just now?!?" "No", the man replied. "How did you lose him?" Mouth agape, I point to my feet, "He's faster than me!" The man dropped his fishing pole, "I'll help you look for him. Will he know where to stop?" I thank him, and shake my head. The girl wants to go with him, but he tells her to stay. "If you see him, tell him "stop" Tell him to wait right here for mama." I have a split second debate about whether I try to explain to this family that my son has autism. I decide not to waste my breath on that, and run back to my car (which I should have done 15 minutes ago) and start to drive along the path with my windows wide open shouting his name. Finally I see him heading towards me on his bike. I swerve towards him and slam on my brakes. I almost hit a car riding along side A -- it's the fisherman, who found him first and was accompanying A back towards me. I am grateful. I am so incredibly relieved. A sees that I am upset, I see that he is not. I try not to yell at him. I think he really didn't realize that my expectation was that he would stay close to me. He knew where he was, and was happy riding his bike. He was not worried. I was just about as scared as I've ever been. Well, maybe it was on par with the time B ran down the ravine by squid's house. But at least then I had my friends there to help me - this time I was reliant on strangers and not thinking fast enough, not acting fast enough. I try a few short sentences of explanation to A, "You need to stay with Mama. You have to make sure I can see you, and you can see me. I was really scared. I didn't know where you were. I couldn't see you." He senses I'm upset. But doesnt really understand. We buckle up, and go on our way.

sometimes i'm just so amazed at how much beauty I can see just walking out the door... like today as I left work, the sun was on its way down, glowing golden on the orange leaves of the trees - just beautiful. And then as I was leaving the grocery store (on a rare sober trip) the moon was full and bright, and it just got me thinking how grateful I am to live in a part of the world where we can still see the sky and breathe the air and gaze at the moon...

Cousins and Cars

I don't have much family out here, so it was unusual to get a visit from my mom's cousins last night, who were on the peninsula for a friend's granddaughter's bat mitzvah. I grew up with their kids, we went to school together, the older ones babysat for us when we were little, and we spent summers swimming in their pool (which they say now holds 400 goldfish - the oldest are 10 years old and a foot long). The first thing they said when they walked in and met my boys for the first time was that Grandma says hello. A picked right up on the reference to Grandma, and intuitively understood that these folks were somehow connected to his beloved grandma (the general family resemblence and old-folks-from-Florida air helped). At different points in the evening, both A and B snuggled in between my cousins on the couch, and A even had a short interaction with cousin M about cars, which they both admire.
Cousin M: Do you like cars?
A: Cars.
Cousin M: You like to play with cars?
A: smile
Cousin M: Where are your cars? In your room? Go get them!
A: looks at me. I affirm that he should go to the front room and get his cars. He goes, brings back his favorite car, sits back down next to Cousin M, plays with his car, and shows it to him.
Really nice.

a few of my least favorite B behaviors

drinking water out of the toilet bowl
pouring shampoo down the drain
pouring liquid hand soap all over the hallway floor
jumping on and out of bed at bedtime

Sad

I'm sad today, and not dealing well with any thing.

One of the joys of being an 8 year old boy

is taking a shower, and realizing, after drinking a gallon of shower water, that if one points one's penis upwards while peeing in the shower, it serves as a "water" fountain.

Unlimited Potential

In my nightable drawer, I have a little box of "wisdom cards" with affirmations and sage advise. From time to time I select one as a reflection. This evening after his bath, B discovered the box in my drawer and was about to play 52-card-pickup with them. I snatched them out of his hands, and as I was putting them away I realized that he had managed to hold on to one card.

"You have unlimited potential"

Hmmm. B, you can hold on to that one, I told him, as I read the message out loud to him.


Now if only we could figure out how to unleash it.

ciswy

my options, in chronological order:
1. Spent my entire lifetime believing I was fat, even though it's probably only really been true for the past 7 years, and for a time in college. Why? Because of the catty girls behind me in the water fountain line who said that my belly was getting so fat as I was drinking water. In retrospect, they were probably just hot and thirsty and wanted me to hurry up.

2. Requiring speech therapy in first/second grade because I couldn't pronounce the sh sound. came out as s. Not too big a deal, unless you know my name irl.

3. 2nd grade school bus. I got on the bus at almost the last stop, and noone would let me sit with them. Happened repeatedly. Although i wasn't aware of why at the time, in hindsite and conversations with my bro, it was probably bec i was one of the few jewish kids on the school bus.

4. 4th grade. chorus tryouts. basically all the kids get to join. all the time. except for me. Did it have anything to do with the fact that all the other kids were given familiar christmas songs to sing, together in a group, and I was given a hanukah song that I didn't know to sing by myself?

5. 6th grade when two classmates taunted me (endlessly), claiming that I stuffed my bra. And that I did such a poor job that the 2 sides were uneven.

6. Junior high, and the perpetual lunch time fear that I wouldn't have anyone to sit with in the cafeteria.

7. Adulthood, challenged to take on a creative writing project and terribly fearful that I don't have the ability or the wit to produce anything publishable.

Moon

B pointed to the moon and approximated "moon" tonight (I prompted, as T or I do every night it is visible from the bedroom window, to say goodnight to the moon).

Distal pointing.

Yeah.

Sleep Away Camp

I signed up BOTH my boys for 2 sessions of weekend sleepaway camp, in December and March. Such a big step! I think it will be really good for them, and I KNOW it will be really good for me. I talked to another parent there who also has 8 year twin boys with significant disabilities, who was incredulous that T and I have only had 2 nights (not even consecutive) EVER alone together without the boys since they were born. He's been sending his kids to sleepaway camp since they were 5. I'm really hopeful that it will help them increase their independence skills, and just open them up to a new experience. Many thanks to jennyalice and Mama B who supported me in making this big decision!

I accompanied another mom to an iep meeting today. The school psych was trying to explain that her beautiful did not meet the requirements for a mental retardation diagnosis, but he came awfully close. I'm not sure how much she was able to absorb. Just the not mentally retarded part. Or really close. I could see how painful it was for the professionals to break this news to the parent. And yet, the mom needs to know this. She needs to understand as much as possible about what her son needs, including where he is at right now, and what kind of support he needs to progress. Hard day.

Tent Camping!

All four of us went tent camping this weekend, and we all came back whole and healthy with not even a close brush with mortality, so the trip definately exceded my expectations. Sacramento River Delta, with a group of about 65 campers from a special needs group on the Coast, who invited us to join them. Several young adults with disabilities such as downs and autism, including at least one independent young adult with downs who was unaccompanied except by his younger sister. Very supportive group of people. A few high school students around, who were getting social service credits for running after B and helping some of the kids in electric wheelchairs maneuver around the campsite terrain. Great weather, collective meals, swimming and boat rides in the mercury-contaminated fish-filled river. I think we'll do it again next year. Maybe even time to invest in our own tent.

I took my first-ever yoga class tonight, and really enjoyed it. Gentle Yoga, the class is called. 7 students, many with issues such as arthritis, obesity, joint issues. Age range from 20-something to 70-something. Great introduction for me. I'm hoping to be back there next Monday evening.

Good Boy

Every morning when I put B on the school bus, I tell him he has to be a good boy, then ask him if he will be a good boy, then wait for him to echo back "good boy" so I know he is paying attention. Seems like the concept is not quite sinking in though.

B has been having some "issues" with the school bus. The problem started on the day that the classroom staff put someone else's jacket on him on a 90 degree afternoon and sent him home on the bus for a 90 minute ride. Poor guy was overheated and not happy. Ever since then, he has been figuring out how to wriggle out of his buckle guard (and through the guard out the bus window) and wriggle out of the harness (this kid is more agile than Houdini!!!) and walk around the schoolbus as the driver is trying to concentrate on Freeway traffic.

Equation II

so i think there must be an equation between amount of wine drunk and feelings of great love. I think the equation results in a sine curve.

2 glasses of wine later...

The teacher I'd been waiting 2 years for until an opening in her class became available for one of my sons.... is having a hard time with my son. Aaarghhh!!!! I thought she'd be perfect for him, provide enough structure to prevent the negative behaviors and encourage some actual learning and progress. But instead she writes me notes that he is pulling down his pants in the play area and at snack time and starting to poop.

WTF does he have a 1:1 for if not to NOT LET HIM PULL HIS PANTS DOWN AND POOP IN THE PLAY AREA?!?!?!?!?!?!?!?

One of the many things I'm grateful for

Doing housework is a nonissue in my home. T does the majority of it. I do the things he doesn't like to do. We have periodic disagreements about certain things, but that's on a monthly or yearly basis, not a daily basis. We both share a general philosophy that we each try to get done whatever we can when there's a moment, so noone gets stuck with too much at the end of the day. That's a really nice thing.

The things I want to know about blogging

How come squid's blog always knows who I am, but my own doesn't?
How exactly do you make those cool links to the things you are talking about?
How can I change my background color to purple instead of bright pink?

Fruit Trees

My parents owned and lived in the same home for 32 years and never once planted a fruit tree. Since we bought this house 6 years ago, T has planted 1 lemon tree, 2 peach trees, 1 plum tree, 1 cherry tree, 3 fig trees, 1 apricot tree, 1 nectarine tree, 1 orange tree, 1 apple tree, 2 pear trees, a grape vine, several berry varieties, and a few others that didn't survive. 1 of the peach trees and the orange tree died, and the cherry tree has not born fruit (apparently needs a partner). The berries didn't survive. But we have one heck of a fruit harvest. And if you've ever been to my place, you know we don't have a whole lot of land, nor do we spend an extraordinary amount of time these days in the garden. But oh how beautiful it is to lie in the hammock at sunset and feel the breeze blow threw the leaves and spot the ripened black figs that I plan to pick as soon as I can convince myself to arise.

Equation

I think there must be a mathematical equation that proves how the closer it gets to bedtime (theirs, not mine) the less patience I have.

HOT

Not as in hot mama. As in 97 degrees. As in I want to go to a cool dark bar and drink a beer. And hang out where no-one under age 21 is allowed. Where no one whines, including me.

SuperMoms

Why is it that the moms in my tribe feel like we are required to be supermoms 24/7 and if we miss for like 15 minutes then we consider ourselves to be total failures? Why cant we cut ourselves a break and say hey, I'm doing a really great job, and i do a really great job about 90% of the time, and that's amazing, and I'm amazing and my kids are amazing and if something slides every once in a while its because I'm just human and that's ok, it's a good thing even....

i think i'm going to try to model that attitude. Call me on it if i don't....

Good Day

Yesterday evening I had the most beautiful conversation with my oldest son.
Me: "How was your first day at school? Did you have a good day?"
A: "Good Day."

Ok, I know it is echolalia, and I set him up, but still, he doesn't repeat things that he doesn't understand or doesn't want to say. So I really think he was telling me he had a good day!

And B's teacher said that all things considered B had a good day too. Only problem was escaping. He is way too fast for them. Today she told me that he stole an oreo cookie from another little girl at recess. I love the fact that she is honest with me and reports these things!!!!

I think we're going to have a good year.

As I'm sitting here trying to figure why I am feeling sorry for myself, I realize that I was triggered by my adorable 5 year old neighbor, who I saw earlier this evening as she was getting in the car with her mama to go by crayons and I was schlepping groceries in from my car. "Tomorrow I'm starting kindergarten!" she gleefully told me. So i realized I am suffering from the what-I'm-missing-out-on blues. That was supposed to be me with the cute-as-a-button first-day-of-kindergarten little girl getting ready for Spanish Immersion School and already probably the most bilingual person (adults included) in the entire school.

I love my boys dearly. I really really do. I'm thrilled that BOTH A and B approximated the word school bus as we had our bedtime chat about going back to school tomorrow. I know that they understand that they'll go back to school on the school bus tomorrow, and that is AMAZING. But it's not italy.

B-T-S

Back-To-School always gives me the heebie-geebies. I guess that's what I really should have told the newspaper reporter. The hardest part about being a mom of special needs kids at back to school time is the harsh reminder of just how different our lives are. I'm just fucking tired of always being different, having kids who are different. I guess i need a lesson in accepting our differences.

Male Nurse

I go out of my way to identify and select women to be my doctors. As a general rule, I really don't like being touched by men I don't know. Even my dentist is a woman. So I was quite disconcerted at the doctors office the other day when my (female) doctor told me the NURSE would be right in to hook me up for an EKG which involved HIM going under my bra, all around my legs, and other (previously) private areas.

As you all know, I'm the last to favor gender-based stereotypes. So I shouldn't necessarily have been envisioning a female nurse. But it did throw me a bit.

Squid Saves the Day

I am still in the process of recovering from A Very Scary Incident During Which I Lose Visual Contact With My Youngest Son In a Dog-Horse-Chicken-Filled Ravine That I Can't Climb Out Of.

In our relationship, T is the one who is always looking out for potentially dangers and pitfalls for the boys, and I am the one always saying, oh, let's just try it, it will be ok, noone is going to get hurt. He thinks I'm slack and careless, I think he's a paranoid scaredy-cat. In the end, I think we probably balance each other out nicely.

But I am rethinking the level of risk to take now. After the Scary Incident. In part because I PANICKED. I always assumed that if I perceived my children to be in mortal danger, that I would react immediately and appropriately to rescue them. But in reality, I just stood at the top of the ravine and screamed my head off. Which of course had no affect on B. Or rather it had the affect he was looking for, and thus he just ran further down the ravine.

Fortunately, my hot mama friends came to the rescue. Squid bravely and calmly (something I couldn't muster at all, but had a wonderful affect on B) went down to the depths of the poison oak and sticker patches and pushed B up by the butt, then pushed me up by the butt since I was quite incapable of climbing up myself, while jennyalice and Mama B watched over A and Leelo and their own kids.

I was pretty disappointed in myself and my own inadequate reaction. And disappointed in B for blatantly disobeying and willfully entering into a dangerous situation. Proud of A for independently deciding that we were all where we shouldn't be and climbing back up to safety. And grateful for the tribe that helped me get through it.

M and S

S went to preschool with A and B. He is one of the success stories. Now a rising 3rd grader, fully integrated, doing well. Will totally live independently as an adult. And right now a very sweet kid. Twice this week we found S, his younger brother M, and their cool mama at the local school playground, where all the kids ride their bikes and pull branches off the eucalytpus tree. Last time S helped me find B when he went missing (unnoticed by me, B went into the boys bathroom to pee, all by himself, and S found him washing his hands at the sink). Today S helped me when B tried to escape out of the parking lot on his bike (S on his bike is a lot faster than me on foot!). In retrospect, I don't necessarily think B was trying to escape; rather, he had seen S riding over the speed bumps, thought it was cool, and was doing the same thing.

Oh, by the way, I highly recommend teaching your kids to use their bike brakes BEFORE removing the training wheels. It is VERY hard now for me to teach this important lesson, and they are riding VERY fast.

B is so present lately. Really on. Paying attention to everything. Thinking about what he wants and how to get it. Trying to repeat words, really trying to make the different sounds, like more, faster, off and on (yes, we're talking about the blender here). A total speed demon on his bike. Wakes me up every morning with his helmet and sneakers on, ready to go. I rub the sleep out of my eyes, put on a bra and shoes, and try my hardest to keep up with him. Although he is doing a great job stopping at the corners and looking for cars. He actually turns his head, points his finger, and says "no cars" (in his own B-way). Beautiful.

A is hanging low. Showing more and more signs of add. It worries me. Except I know that whenever one of them is doing well, the other takes a hiatus. We'll see how it goes.

B on Bike

B has just about mastered riding a 2 wheeler. I'm so proud of him. T took one side of the training wheels off, and B did just fine. He gains speed and keeps his balance. Pays attention to where he's going. And so motivated! Put his helmet on at 7:30am, and his shoes.
Me: What do you want, B?
B: Bah.
Me: Bike?
B: Bah!
Me: Ok, take off your pajamas and put on some pants, and we'll go outside and ride bikes.
Within the blink of an eye, he was dressed and ready to go! Sped down three blocks to the end of our street, and then we turned around and came home, me panting, trying to keep up with him.

I think I need to buy a bicycle for myself, because I surely can't run fast enough.

Reflections on the Past Year

Among the things I realized this past year:
* My children really do have autism. Ok, so I'm still a bit in denial, but almost, almost at the point of acceptance.
* I feel best when I'm working to make positive changes in our community.
* I'm proud of the work of the task force.
* I still don't have as much patience as I need.
* I feel best when I include exercise and meditation as part of my daily/weekly routine.
* Building relationships is key.
* I control my thoughts; I control my life. (I tend to forget this last one too often).

Harry Potter

Spoiler Alert: I am about to reveal the main point of the entire Harry Potter series, including Movie #5, Order of the Phoenix.

Friendship and Love are the most important things in life.

Trust your friends. Look out for them. Follow your heart. Tune in to your instinct. Have confidence in your own abilities, and also recognize that you can't always do it alone.

I think that's why I like the series so much. Plus the fact that it is a total escape from reality, like a mini-vacation from being stuck inside my own mind.

My good friend Moon came over for a visit today. I adore this child for many reasons, one of which is the fact that he is the only child in the universe who asks to go to A and B's house for playdates. Here's a glimpse at the first 5 minutes of our date:

Moon: I want to watch THIS video!
Me: Moon, do you come over here just to watch videos? (naively thinking this was a good way to seg towards interactive playing)
Moon: Yes!
You've got to love his honesty!
A moment later, he is at the toy shelf, pulling out the box of trains and the box of traintracks. Sorts through, and finds James. Tries sticking a few magnet trains to the back of James, and seems somewhat agitated.
Moon: Where's the t..m...ah?
Me: Where's the what?
Moon: The t...m...ah!
Me: I don't know, let's look in the box.
Moon: I can't find James' t...m...ah
Me: The Thomas train?
Moon: No, the t..m...ah!
Me: Maybe we don't have one.
Moon: James needs a t..m...ah
Me: A timer?
Moon: No, a T...NM...EH.
Me: A movie? A movie about James?
At the mention of movie, Moon takes James and goes back to the living room to watch the video he picked out. A sees Moon with trains, and goes into the front room and continues sorting through the box of trains, lining them up in row. When the video gets boring, Moon joins A, and now spies what he is looking for.
Moon: Here it is! James' tender!
Of course, James always has a tender. Ignorant me, not only do I not pay enough attention to the omnipresent video to realize what was missing from James, I don't have a vocabulary nearly as sophisticated as Moon, who although he has slight articulation issues, sure knows his train parts!!!

We had a lovely playdate. Picked and ate apples from the tree in the backyard. Played hide and seek. Played catch, jumped on the trampoline, water play. A few rounds of the aligator dentist game. Another video and the promise that he could take one home later if he agreed to play outside for a while. Very nice.

Lack of anonymity.
Sense of community.
Which is it?
Both, I guess.
Or maybe just the small town feel of this town.
Where I take my kid downtown to hear some free live music, and we run into his preschool instructional assistant, a colleague from work, and the County autism specialist and her kid, all within about 30 minutes. Luckily I was with A and he was extremely well behaved, actually sat on the edge of the fountain without getting wet at all and enjoyed the music for at least 4 songs, and when he got up and I asked him if he wanted to dance, he DANCED for a moment.

JOAN!

We went to see Joan Armatrading in concert last night. Absolutely amazing. She is one of my top 3 favorite singer/songwriters. Right up there with Tracy Chapman and Gilberto Gil. Excellent show. We were in the FIRST Row!!!! I've never ever been in the first row before. She looked at me, smiled at me, sang to me, danced with me. And the techies let us take her song list at the end of the show! Amazing.

ready to retire

Why is it that people retire at 62 but not 42? I'm quite ready to retire now. Although there was a good bit of stress on my vacation, it's nothing compared to the stress of returning to work.

Good Trip, Great Boys

I really couldn't ask for better behaved EIGHT year old boys. A has been an absolute angel. Puts his dirty clothes in the basket in the laundry room, clears his plate off the table and puts it in the sink when he is done eating, asks to go pee-pee when he has to. Total pleasure. B has done a great job, too. Other than climbing up on to the glass dining room table to spin the chandelier, he has been remarkably well behaved. Yelled a handful of times. Drinks the pool water. But nothing major, no big problems. Both very lovey with my grandma, especially A. A, B and Nana were sitting together on the couch this afternoon, A really cuddling with her and interacting with her, and B right there next to them, not missing any of the action. My folks have really been good with the boys, too. I have to give my mom a lot of credit. She really has assumed responsibility for them in many ways. It's been good practice -- quite possibly for August, when maybe she'll take one of them back here for a week. And we've all been ok without T. Although I do miss his company/companionship/partnership/love, in many ways it is less stressful and calmer and less work without him at my folks house. Interesting, I wasn't really expecting it to be that way.

Nana

A bonded with his 94 year old great-grandmother today. They sat at the table together reading a train book. They counted 1-2-3-4-5 trains. They pointed at the passengers and the trees and the conductor. They had a great time. When I got ready to drive Nana home at the end of the evening, B ran to put his shoes on. He decided he was coming with us. Pressed the right buttons on the elevator. Greeted Nana's friend in the hallway (said bye instead of hi, but it was still appropriate because we were on our way out.). Very good boys.

Florida

I've told Grandma she's in charge. Today she and grandpa took the boys to Gee Whiz, the children's science museum in Sarasota, while I had a lovely afternoon with my grandmother. She told me stories of how my grandfather's mother got divorced when my grandfather was a toddler, because her husband, who was a milkman, was cheating on her. And how she and a woman friend invested $400 in stock in the 1960s and that it's worth a lot more than that now.

The boys are loving the pool. B has swallowed about half of it already. A is teaching himself to swim. He puts his face in the water and blows bubbles. And he is jumping in off the side of the pool. I know he is preparing himself for the diving board at the RM pool, which he is fascinated by.

B did just fine on the plane. A did great on his own with Grandma/pa. I'm very proud of them both.

Airplane

Next week we are flying to Florida. Grandma is here now, and is leaving on the plane with A on Tuesday. Then B and I fly down on Thursday. I'm freaking out a bit about this all. About how A is going to handle being just with Grandma and Grandpa for a couple of days. About how I am going to handle both boys without T for a whole week. This will be the longest time T and I have been apart since I was pregnant. This is one vacation I am not really looking forward to.

Anniversary

Today is our 7th wedding anniversary! We are celebrating with a dinner date tomorrow evening. A wonderful opportunity to reflect on how blessed I am with my amazing family.

A

A and his tutor are in session. Tutor points to a picture of a car taped to a whiteboard easel.
T: "What's that?"
A replies in his whisper voice, "car".
T: "point to the car" A points.
T: "write the word car" A takes the dry erase marker and writes CAR.

B

B is hooked on airborne. I don't know if what he likes is the fizz, the flavor, the color, or the cool cylinder that they come in, or a combination of all of the above, or something I'm overlooking. In any case, he found the tube in the kitchen this morning, and put one in his tea. Then he wanted another one. I told him no, he already had one, and asked him if he wanted a vitamin. "Vite" . So of course he got one. Then he tricked me to get out of the way, and grabbed the airborne tube again. This time his papa intervened. "Open". (sounds more like uhpuh, but the intent was crystal clear). T replies with "Uno" trying to get B to agree in advance to just one more. B: "Uhpuh". T tries again, "uno" and holds up one finger. B responds by holding up one finger. Gets his second fizz of the morning.

Today's Little Slice of Heaven

The Scene: Both boys in session with tutors. Door open. I approach.
Tutor to A: Who's that?
A (turning to look into my eyes): Mama
My heart absolutely melts.

Roller skates

I've spent about 2 years (very intermittenly, of course) looking for a pair of roller skates for B, on his 1st grade teachers' recommendation (I guess they had a pair at school that he liked). I hadn't been able to find a pair in his size that were not inline and not pink (my criteria, not B's). Well I finally found them, and Teacher J was right! He loves them. Has been skating around the living room in them. Started to do tricks, like putting one on and jumping off the couch -- really cool. Or putting them both on and going down the one and only stair in our entire 700 sq ft house. He's really cute about it though, finding them whereever they are, putting them on himself, and just enjoying himself. So very nice to see him just enjoying himself.

Big Brother A

We were at the little animal/berry farm on the coast yesterday, hanging out in front of the chicken pens. B is casually sticking his fingers through the holes in the chicken wire. I tell him to move his fingers out of the fence. No response. I tell him he better be careful or the chickens will eat his fingers off. A moves over to B and physically pulls his fingers out of the fence for him. Good job taking care of your bro, A!

focus

I think maybe i've developed add. I can't seem to focus on anything. It takes me forever to get anything done. Feeling very unproductive. Do you think it's age? Is this normal? It doesn't feel normal.

Ok, so back to happiness. Like this morning. B woke up really happy. He lost a wiggly tooth, and I think he was pleased with this. Also, the bedroom furniture was rearranged, and he saw a great jumping opportunity. Only thing is, he needed me to move so he wouldn't land on top of me. I'm not sure if he was being considerate of me and didn't want me to get hurt if he landed on me, or if he surmised that he'd be better off landing on the mattress than on mama (although these days, I'm probably even more squishy than the mattress). Anyway, he was just so purposeful with what he wanted, selecting a magazine from our bathroom collection to take back into bed with him after his early morning pee in the potty, arranging the covers the way he thought they should be, and later pouring himself a bowl of his current favorite cereal (peanut butter panda puffs). And happily munching away on them. Yeah. Happy. B was happy this morning. And that is a real blessing. He used to wake up crying (as T reminded me). Now he wakes up happy and purposeful and able to communicate enough and act enough to get what he wants. And he's happy. What a blessing.

Happiness

Every once in a while, not nearly often enough, I am able to totally BE in the present moment and enjoy and appreciate all my blessings. And really be happy. Sure, pieces of life are hard. Of course, I wish that my children's lives were easier. Maybe not easier, but less complicated. I don't want my children to suffer. But isn't that what all parents want? And so many parents watch their children suffer because they can't afford to feed them nutritious food, or buy them medicine when they are sick.

But I digress. I meant to write about happiness and here I am writing about suffering. I guess that's why I find it so hard to STAY in the present moment.

Happy Mothers Day!

I've discovered the perfect antidote to the mothers day blues. I'm a bit too shy to come right out and say it on my blog, but I'll give you a big hint. It involves the activity you were engaged in that made it possible for you to celebrate mothers day today.
Now, if only the kids would fall asleep.....

summer camp

So we went to visit camp crum this morning. B would definately need a 1:1, and they definately don't have 1:1 available at this point for this summer. So we will put a "sign up for summer camp" reminder in the calendar for November (when of course that is the last thing we think about in NOVEMBER), to see if we can secure 2 spots for next year. very beautiful, in the mountains, but lots of potential danger for a bolter. And I don't want to send A by himself the first time. So we'll wait. They both really liked the place though.

power of mind

I got an email yesterday, a powerpoint presentation on "The Secret: Law of Attraction" basically, what you think about, happens. If you think about good things, then good things will happen. If you htink about bad things, then bad things will happen. That our truest beliefs, our deepest thoughts, make things happen.

Do you think that's true?

Progress

Trying to Brush teeth by self (A, B)
Buttoning own pants (A mastered, B trying)
Trying to talk (A, B)
Trying new foods (B: watermelon; A: pork)
Playing with the waves at the beach (A, B)
Following directions, sitting at the table for dinner, learning to wash own bodies in the shower (A, B)
Making time to meditate (me)

VERY Special

Five years after my sons were diagnosed, I am still totally blown out of the water. I suspect I never really left the denial stage, haven't yet made it to the acceptance stage. At first I willfully opposed the entire concept of acceptance, as it felt too much like quitting. Rather than accept they had autism, I wanted to cure them of autism. And thus spent the first year full steam ahead, learning as much as I could about mercury, methylation, peptides, opioids, EFAs, ABA, apraxia, proprioception, due process, IDEA, FAPE, and the like. When we reached the magic milestone of 5 years of age, and it was clear that early intervention did not equate with "cure" in our case, I began groping again for a theory, a vision, that could pull me through. By the time the boys turned six, I had pretty much settled on:

Fully accept and love both A and B exactly as they are today. Believe that anything is possible in the future. Do whatever I can to help them reach their fullest potential, whatever that may be.

This, combined with my overall worldview of:

Fight injustice whereever it may be found. Work towards system change. Each of us can make a difference. Accept personal responsibility for making the world a better place.

has lead be to where I am today.

So why does it hit me like a ton of bricks when the special needs summer sleepaway camp coordinator calls me to say that she has reviewed my applications for the boys, and despite our initial phone conversation she now feels like my children need more support than their camp can offer right now. This is a FUCKING SPECIAL NEEDS summer camp. That's all they serve is kids with special needs. I'm not fighting to get my kids included in a typical summer camp. I'm aware that we couldn't handle that. But this is supposed to be for kids with special needs. WE ARE JUST TOOOO FUCKING SPECIAL.

What a hit. I'm still trying to recover from it.

Thirsty?

Then just dip your hand into the toilet bowl and scoop yourself out some water to drink, yum! Even better if Brother A was the last one to use the toilet, because then you have a 50% chance of getting some pee mixed in with your water. Gives a whole new meaning to mixed drink.

I thought my youngest son had outgrown the toilet bowl drinking habit already. Guess I was wrong.....

Priorities and Motivation

for me and my kids. Sometimes I think that B is the biggest procrastinator in the world (like in the morning when it is time to get dressed but he wants to watch the train video or line up my earring collection). But then I think of myself, and how it takes me forever to get some relatively straightforward tasks done and how I invent these other priorities (like writing in my blog, or better yet, reading your blog) instead of doing what needs to be done (signing my kids up for summer camp, calling back the doctor, filing my taxes - ok, I squeaked in at the last minute for that one).

Spring Resolutions

Rules to live by:
Be intentional.
Prioritize.
Live in the present moment.
Think kind thoughts about others.
Think before talking.

Short term goals:
Generate creative energy.
Connect with people who inspire and energize me.
Don't be afraid to take on an occasional challenge.
Don't take on too many challenges at the same time.
Seek support.

BEACH

Cold breeze, bright sun, Pacific waves, and my two beautiful boys playing in the surf. Fear overcome. Frigid waters ignored. Watchful of the big waves. Splashing, jumping, huge smiles on their faces. Such a beautiful day that grandma and I decided to pretend it was mothers day.

Spring Crisis

So I'm starting to notice a springtime crisis pattern. I think it's the confluence of work-related stress (triggered by the end-and-then-beginning of my program's fiscal year budget), tax season, iep season, and usually exacerbated by a trip to florida.

Connected

I really connected with B this evening. T and A had already gone to bed (T was asleep, A was waiting on the top bunk to make sure that B would lie down in the bottom bunk). B had started to tear up a bit on the couch, not a meltdown, just a sadness, which happens to him from time to time, in a way that makes me wonder if he is reflecting on a sad emotion, on a really profound insight on the world and his own life, or if he has gas or maybe constipation. Or a combination of all that. Anyway, then he started going through the kitchen cabinets in a very purposeful way, and comes to the table with an unopened large plastic bottle of V8 like juice (which he has always rejected up to this point) and a wine glass (his beverage recipient of choice, and please don't try to offer him the plastic alternative in the same shape, only glass will do). I ask him if he wants me to open the juice, and he approximates open, so I do. He tries to pour but the bottle is big, full and heavy and his glass is thin and breakable, and the liquid is red, so I intervene and pour for him, just a 1/3 glass since I think he won't like it. He starts to drink, makes a bit of a face, but finishes his glass eventually. Then he wants more, so I pour him another 1/3 glass, and he protests, so I pour him a tiny bit more and tell him it's a lot (it is already 9pm and we try to avoid letting him have too much liquid at bedtime since until a few months ago bedwetting was a regular occurance). But he protests again and very clearly wants more, so I pour him a very full glass and he is happy. Does he really want that much juice, or is it just visually appealing to watch the thick red liquid fill up the pretty wine glass? But eventually he drinks it all. Meanwhile, he comes over to my chair, puts his arm around me and gives me a kiss. Then he spends some time peering into my mouth, exploring my teeth and tongue. What a little guy. He has so much going on inside his head, and there is so little of that that I really manage to understand. I think I need to try understanding much harder. My sweet boy.

Out to lunch

My family went out to lunch today. All four of us. After esoccer. To a restaurant that does not sport golden arches. We ate frenchfries (A) and Steak (B) and generally behaved very well. No scenes. We all got to finish our meals. We weren't the ones feeding the ducks, but we enjoyed watching them run after the bread that the neighboring diners were throwing to them.

Ah, small miracles.

Gilberto Gil

Wow, what an amazing concert on Wed. night! So spiritual, moving, touched me deep to my soul. Made me consider culture in a whole new way. Powerful messages with equally powerful delivery.

Failure

I had the opportunity to look failure in the face this past week. Tore part of my soul out I believe. Raised a lot of issues for me regarding ethics, value, communication, and ability. In the end I was able to conclude that I hadn't really failed. Or at least that the failure wasn't 100% attributable to me. But in the process I self-learned that I have A LOT of issues with my own failure. I have a really hard time accepting the fact that I may not be successful in something that I attempt. That I may fail in something that I attempt and try really hard to achieve. I may fail even though I try my best. That terrifies me. I may fail even though I try my best. I think that is the heart of my terror. I think that is a lesson that I really need to learn. That even though I try my best I may fail. And that's ok.

balance

i think i need to spend less time worried and stressed out over my children's futures and more time enjoying the present moment with them.

super stress

super stressed out by work right now. specifically with a miscommunication, probably series of miscommunications, with a colleague who i am charged with supervising. we spend a lot of time describing the two different sides of the same coin without agreeing that we are both looking at the same coin. things came to a head on friday afternoon -- i'm not 100% sure how we came to 2 very different conclusions at the end of the same conversation -- and i think she may be ready to resign. this is exactly the sort of thing that triggers my stress levels and keeps me up at 3am in tears and frustration. not exactly a healthy response.

proud

B is snuggled up on the couch with his papa right now, both are watching the featherweight boxing tournament of the Caribbean. Both equally absorbed. A already brushed his teeth and went to bed when it became clear that he lost the Thomas v Boxing battle.

A wrote his name by himself yesterday. He was doing his homework, letter coyping worksheets, and I asked him to write his name without giving him any visual prompts. Just, write your name x x x x. And he did. Beautifully. I'm so proud.

Question

If our children were to find life partners one day, wouldn't we want their life partner to understand and accomodate their disabilities instead of getting so frustrated by them and/or resenting the manifestations of the disabilities?

So why then do I find it so hard to do the same with my partner?

*** The only person I can ever change is myself***

migraine headaches

possible triggers:
* alcohol
* stress at work
* not enough sleep
* stress at home
* not eating well
* combination of stress at home and work
* not drinking enough water
* not taking enough time for myself
* stress

things i need to do

1. Get A new eyeglasses
2. Make dentist appointments for both boys and myself
3. pay bills
4. do taxes.
5. figure out next ieps
6. review home program notebooks
7. wash kitchen floor
8. get a massage

OCD

is driving me crazy!

Honeymoon

Back from our first ever night together away from the kids. It was really fun!!!! We went to the Jackson Rancheria Hotel and Casino (!) to see Steppenwolf on their final 4oth anniversary tour. Spent the night there. Went to a casino for our first (T) or first-since-turning-21-and-not-getting-kicked-out (S) time, but were too overwhelmed by the smoke, noise, crowd, unfamiliarity of the whole situation, and stupidness of putting money in a machine just to push a button a few times, and eventually just lose the money. The concert was great, though, I enjoyed it much more than I expected too, in part because we were in the fourth row and could actually see John Kay's facial expressions as he sang. We also ran into one of the boys' aides from preschool there! On the way back we stopped in a really cute town called Sutter Creek, wandered into some art and antique stores (places we could never dream of walking into with the kids), chatted over coffee, stopped at the Chocolate Factory and again at the Tracy Outlets (As we are driving in the car, I'm trying to explain to T about the Outlet stores, sabes los almacenes donde todo es mas barato, and he says, como los "outlets"?. The selectiveness of his English vocabulary never fails to amaze me.
Meanwhile, grandma and grandpa held down the fort at home, taking B bowling (!) and out to lunch (!), getting A off to school just fine, getting everyone in bed and asleep by 10pm with no jumping, and left me wondering why we waited 8 years to try this....

Will

I don't have a will. It's just one of the many things that still hasn't made it to the top of my priority list. But if by some fluke both my husband and I should die in a car crash or something, I want my parents to take care of my kids. And I want you all to tell them everything they need to know so they can do it.
Thanks.

confronting my own prejudices

I want to challenge myself to confront my own prejudices. The Captain showed me a blow-me-over video by a woman with autism, and a couple of websites written by people with autism, that really has me thinking alot about the assumptions that I make regarding people with disabilities. I make assumptions based on what I see or what I believe about categories of people that can be totally off base and of course disrepectful. I think the big lesson for me is don't assume.

Age-ism is another issue that I need to work on.

Taking responsibility

Owning up to the things I mess up. Saying, I should have done that, but I didn't. Or, I'm sorry for doing xyz. Sometimes it really makes a difference.

socks

Tonight, after his shower, when he was putting on his pjs, A realized something was missing and made a spontaneous verbal request.
Socks.


Amazing.

e-soccer

Today was the first day of the e-soccer season. I was very proud of all 3 of us. Of me for being brave enough to take the 2 of them. Of A for sticking through it the whole time, although in the past he's been apprehensive about the whole thing. And of B for only bolting 3 times, and always towards me, never towards the street. Coach J literally did a double-take when he saw me walk up with both A and B, since he's never met A before, only B. I swear I saw his jaw drop. Assistant coaches David and Justin were just amazing with B and A, despite the fact that - or perhaps because -- they themselves are still teenagers.

A New Year

I had a hard time deciding if I should first go back and see what my last year's resolutions were or first write this year's resolutions. I think I'll start with this year's, and then go back and check.

1. Patience. This is an ongoing resolution for me. I am definately more patient than I've been, and not as patient as I need to be. Probably will always be the case. The important thing, I think, is to keep working on it.

2. Appreciating what I have. This includes being grateful for my partner and my children, my whole family, my friends and support network. Also appreciating all of the material blessings that we have, including a roof over our heads, plenty of healthy food, running water and electricity ALL THE TIME, employment, and all the basics.

3. Let things go. Don't let all the little annoying things that happen hundreds of times a day bother me. Recognize that I control how I feel about things, I can be annoyed, or I can let it go. I can always choose to let it go.

4. Think positive. Dwell on what I DO want to happen, not on what I DONT want to happen. Focus on what is good, not what is bad.