Sunday, January 29, 2006

My tribe

I finally had my tribe of women over yesterday. The "special" women. The hot mama's. All of us have special needs kids around 5 to 7 years old. A few of these women given more than one child that has "therapy" as a part of their child's weekly schedule. Autism and "autistic like tendencies" is someting all of us understand and live. Five of us women total and 1 who was invited, but was out of town. We all are married and have 2 or more kids.
I feel so blessed to have found these incredible women on this crazy journey.
They are: intelligent, funny, loving, wordly, international, critical thinkers, passionate, liberal, world changing women.
We are all on a similar journey, even tough our kids may be different there are similarites.
We get each other.
We get being hypervigilant in public.
We get that everyday can be exhausting and long, that patience is hard to keep.
We know the pain of the park and being with children the same age as ours, who behave nothing like ours.
That people don't call for "play dates" often, if ever.
That people stare in public and pierce you with their unspoken words,
"Why don't they just discipline their child!"
That in our hearts a piece will always grieve that our family isn't "typical"
That you don't get to go everywhere you'd like-like out for a simple dinner, b/c your child(ren) can't handle being in a restaurant or has such a restricted diet, it isn't possible.
That tantrums /melt-downs are part of a typical day.
That small gains are big gains for our kids
And we can celebrate them together
Most of all our children are blessed because they have this extended family that gets who they are and loves each of them for the unique and beautiful children they are.

my tribe

The hospital experience in A's mind

A. has an EXCEPTIONALLY high pain tolerance. I mean scarey high. I am certain it is a component of his sensory integration disorder (SID). Half the tears he shed over his horribly broken arm were not about the pain, but about fear of the situation and distress over messing with his routine. In a kid with autism/autistic tendencies and/or SID the the tears and distress are about different things. In this case:
not getting the milkshake he'd been promised (b/c now we knew we were looking at surgery and anesthesia)
being in the hospital past bedtime
having to take his underwear off
my head in the way of the tv screen
My positive guy found great joy in:
spending the night in the hospital
breakfast in bed
the cover over the plate of food-which contained his favorite eggs and bacon
the tv on the ceiling having Disney Channel
The ER had individual apple computers at bedside on carts-you could choose the movie or show you wanted to watch. The morning after the surgery we had a hoo-ha b/c he wanted to go back to the ER for the computer. When these are the memory highlights-clearly the pain wasn't too bad.
In fact it all seemed so good Ki says she wants to break her leg.

Saturday, January 28, 2006


A. broke his arm. Broke both bones in his lower arm, one of them puncturing out of the skin creating an open fracture. Over to the ER. Surgery that night at 12 am. A night in the hospital.
A. has fine motror and sensory integration disorder and vision differences. Writing is difficult and one of his weakest areas. Of course he broke his dominant left arm. He is splinted/casted from his knuckles to his armpit. This little guy doesn't get to m any breaks.

Tuesday, January 24, 2006

A. Pissed

When Big A is mad he often yells. Sometimes he yells nonsense words. Other times he yells out parts of reprimands he has heard in the past-either from me, others, t.v., school etc.
Over Christmas a new and amusing reprimand was delivered by him a few times:
"That's it Mama, you're grounded for Hannuhka!"
Well, atleast I know he is culturally diverse.

Spelling Test

A brought home his homework for the week yesterday. He is supposed to write sentences for each of his spelling words. It does amze me that he can spell so well. Always gfets 100% on test at school and we never do more than preacitce words orally 1X. This thing about putting them in a sentence was new. I had doubts he could do that.
"Okay, A, what is a sentence you can write with word "much" in it?"
A, "I watch too much t.v."
Looks like he gets it!

Wednesday, January 18, 2006

I have an angel and she was at Safeway today

I was at Safeway today shopping with BA and marveling at his wonderful behavior. This after a hellacious trip to Petco yesterday with the 2 of them sprinting around the store and cutting off people with those little kid carts, tantrums here and there, telling me "no". Today he pushed to cart without banging into things, stayed with me, no tantrums. we ran into Miss S., who was his 1:1 AIDE LAST YEAR. sHE WANTED TO BE SO AGaIN THIS YEAR BUT WAS BUMPED BY SENIORITY. (Sorry hit the caps key there-not really yelling.)
Anyway, she has 2 kids, 1 in college and 1 in high school. SHe told me that she has been feeling bored and is really missing having kids around. She is interested in taking BA and Ki at times and maybe going to the movies or the park. WHAT?? Someone wants to take BA and I don't have to pay them??? We talked about how the movie Curious George is coming out. When we picked up ki he told her, "Hey Ki, Miss S is and I are gonna hangout after school and go to the movies and the park."
( Hopefully they won't show their true colors right away)

Sunday, January 08, 2006


I keep meaning to go back and write about Xmas and all in and
around and since then.

For the moment I am amused that I sit here on the couch- with my labrador, cat and guinea pig. They all hang out together. World peace on the couch.