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.