Saturday, April 25, 2009

Beginning: Green Men and Flax Seed Pastry

Though my prevailing thoughts (and therefore posts here) are jubilant and victorious when it comes to Addie, if you've read for a while, you know that there are things that weigh on me about ensuring she stakes her own claim in this world. Independence has always been important to me, but unfortunately, when you say that word in relation to a child with a disability, people assume I mean things like zipping her own coat, wiping her own patooty and being able to operate a toaster.

Yeah, I guess that's part of it or maybe that stuff builds to the definition I have, but it's not what I mean when I say independent. I mean someone with firm belief in herself, someone who is sure of her place in the world, who knows that she brings something of value to the varied communities she is a part of and because of this, she feels as much joy when giving as when receiving. I have this identical hope for both of my daughters, for myself, my husband and for everyone I love, everyone I care about.

But Addie's exchange of value and mutual understandings with people is all buggared up with being non-verbal and having eclectic cognitive machinery. Some of this independence does come from what might seem like the opposite - an assurance that people know you, believe in you, voluntarily interact with you. That's a little tricky for her. And then there's the therapy factor, where it's all about Addie receiving instruction, help, prompts, rewards for even the smallest things. It teaches a child to accept and to deliver only for praise, not for the good feeling it gives you in your heart to do your best, to make another person a titch happier if even for a moment.

But little by little, I am getting a round about understanding that my girl does have a place and that she is becoming more and more certain of it. The result has been a natural sort of inclusion - friendships.

A few weeks ago a Ziploc with a little toy from Shrek was in her backpack after school. Addie, being the crude humor aficionado she is, adores Shrek and all green upright beings in general. If she were a regular old talking 5 1/2 year old, there would not be a soul left unaware of this obsession. But she can't describe her adoration with all the minutia commonly shared in kindergarten classrooms. She can only make the most of it when there is anything Shrekish in her presence.

So I opened this Ziploc that day and pulled out this little toy. Addie freaked. I was regretting opening it in front of her because I was sure it was a mistake and that the teacher put someone else's confiscated toy into the wrong backpack. But there was a note.

"This is from Miles. He gave it to her this morning because he knows how much Addie loves Shrek."

So this kid, Miles, 4 years old, came over for a play date once. We talked a little bit about stuff Addie is in to, but Addie being a Shrek fanatic was mostly of his own deduction. She doesn't really play much with toys, but we've got the Shrek gear going on here and there. My knee jerk thought when I saw the little toy and the note, though, was "Miles and Addie must have talked about it at school." A remarkable thought, given the circumstances.

Miles is fresh out of toddlerhood and he knows Addie already, knows what would make her screech with rapture, squeeze me in gratitude, as though I had anything to do with it. I didn't. It was between the 2 of them. That falls into my definition of independence.

An evening later that week as I got Addie out of the bathtub, there was a knock on the door. Michael and Cate were making collages so the dining room table was covered with scraps and scissors and paper. I had a naked - but for a towel - junior kindergartner in my arms. Michael opened the door to a tall man I've never seen and a small dark haired boy with huge brown eyes. I knew that boy. It was Charlie, another fellow from Addie's class.

Charlie left a voicemail earlier for Addie that I'd forgotten about. He came by with his dad to follow through. He handed over a bag of mini-muffins. His voicemail forewarned us of his intentions, saying the New Yorky way 5 year olds do "Addie, I made some of dose muffins you weally like, so I'm gonna bring 'em ovew. Don't wowwy, if yew not home, I'll weave 'em in yew maiwbox. Cuz I know you weally wike 'em. A wot!"

Yes, I had been regaled by various aides at pick up time a few times that Addie LOVED snack because they had "Charlie's muffins." I had them once - they are particularly good - chocolate chip pumpkin flax seed mini-muffins - very moist and kinda good for you. The mini size also appealing.

Addie received her treats (in the buff!)and relished them after she got her jammies on.

Addie is making herself known. She is clarifying her place in the world. Her friends (they are truly friends because what is a friend but someone who recognizes what makes you smile and then goes out of their way to deliver on that) know who she is and create the overtures that she cannot yet. Sure, there's parental encouragement going on, but Shrek and flax muffins - those preferences the boys themselves would have to know and have spoken of before any mom/dad-involvement could happen.

We are still working on Addie's side of these reciprocal relationships. She and Miles share a love of "alternative" kid music and so we are working on a playlist for him. I think Charlie is a fan of animals, but we have more fact-finding to do.

The gestures themselves from these boys are kind and influenced by adults, but the knowing what would give Addie the absolute shivvies of excitement is the gift these boys have given to Addie. She herself doesn't recognize that aspect of the offerings as Addie has never questioned her place, never doubted that people would know her and want to be with her. It is I who needed reassurance again.

People are good and I give them credit for that. But I also give Addie credit for inspiring goodness, for clarifying her quirky passions without words.

My girl is becoming independent.

Addie signs the word "love" to her new little hand-me-down Happy Meal baby Shrek

She spins to welcome baby Shrek to the family

Fresh from a bath, enjoying Dad's lap and Charlie's muffins

Blowing a kiss of thanks to Charlie for the muffins

Friday, April 10, 2009


Sorry, but there's more. This was drafted before the breaking news of the swing.

I'm her mother, so of course I think this way. Addie's trajectory leaves a cloud of dust behind her sometimes. It may not often be a generally recognized triumph, but in this mother's esteem, she's pretty extraordinary (which is guess is fairly obvious). As is Cate.

There's a pleasant little bonus going on with regard to letter recognition, as regular readers are aware. I went back and looked up the junior kindergarten curriculum in my district to see where she is with this skill in a general education context. This a partial quote from one element of Language Arts listing what K4 learners need to know by the end of the year:

"How to name most upper case letters"

This week's note from Addie's special education teacher:

Good morning!

Okay here is the latest about the rock star:

The upper case letters she can now identify are: C,O,L,Y,B,V,G,E,F,N,A,P,S,Q,W,M,U,X,H,Z. Woo Hoo!

The six left to work on: T,J,D,R,K,I.

What I have been doing last week and this week is letting her sit on the swing. I stop her and then say. "What letter? Show me". She signs it then after we do a couple she swings. She has been so proud of her accomplishments! She just looks at me and smiles away with her excited body movements.

Addie is crossing off one bullet point on the general ed curriculum BEFORE many of her peers. I know, it should not be important that there are typical peers behind her in this. And it isn't the biggest boon - the greatest part is that she's stepped on to the road to becoming a reader. But it does mean something to me that right now, she ranks in the top half in her class on this one early academic standard. Though that is taken for granted in many cases, I'm not sure how often we'll be able to say that for Addie. Just even this once is big stuff for us.

She has safeguarded herself a bit against low expectations. She is capable of general ed concepts that may at times need to be taught and assessed in less traditional ways. I am ecstatic that she is establishing this in such a grand way after only being a school kid for a few months.

She's not a girl who proves herself incrementally. She, like Cate, prefers not to let the effort show much until the desired result is almost fully baked. This means lots of exposure to things with little evidence of interest from her...until one day - WHAM! - she knows (and cares to prove she knows) most of the alaphabet.

Others are laying things in her path without first demanding empirical "proof" that she can/will take them up (as is so often the case in special ed, unfortunately). The leaps of faith we take at home are catching on. I see her spec ed teacher hopping along, her classroom teacher popping up. Her little K4 friends were bobbing since the day they met her. I envision Addie's school building from the outside, the windows to her classroom looking like the clear plastic crown of a hot air popper in full operation, little popcorn heads up and down, unfailingly giving each other, including Addie, the benefit of the doubt.

And here's Addie demonstrating the appropriateness of the gift by getting through the alphabet in 2 weeks' time. With 2.5 months of school left for the year.

Not delayed. Not slow.


Thursday, April 9, 2009

Milestone: Belly Spin to Sit n' Pump

I had never seen Addie even attempt to sit upright on a regular belt swing before. Until Tuesday. There aren't any swings at school (other than the giant platform one in the therapy room), so it's not something she's been focused on during recess.

On Tuesday after school during our usual backyard routine before lunch, she had me sit on the swing and then signed for me to get moving already. I thought she'd climb up on my lap or head over to her slide. But instead, she watched me from the front, from the sides and from the back for a good 10 minutes or so while I narrated my amusement ("straight, bend, straight bend, I'm pumping my legs, straight, bend, it makes me go, straight, bend..."). At the point of her choosing, she booted me off and requested that I help her sit upright on the swing. Normally she's belly down, winding the ropes so she can spin out. No spinning on Tuesday.

The second we were both satisfied with her position and grip on the ropes, she started straightening her legs and bending them alternately. Not at the cadence that would actually get her a good even swing - skipped a few switches, but she gets that her legs control her movement. And she's pretty pleased with her clever self.

Here, have a look.

Friday, April 3, 2009

Wish for Simple: Granted

I got it. Just finished taking delivery.

The ebb and flow of general parenthood is plenty itself, but then add the layer of having a child with a disability and you're mixing in additional sacks of details: IEPs, assistive technology, medical and therapeutic interventions, activism, advocacy, trainings, meetings, various swamps of fiscal quicksand, etc. On the whole I feel up to the challenge, but there are times when so many gusts are swirling at once it gets overwhelming.

This is one of those times. Without getting into particulars, there's a lot going on. This week I've been up later each night crafting messages that likely will need to be morphed into arguments, solving problems, trying to figure out alternative ways of doing things, reacting, planning, planning and reacting.

I walked into Winkies (mentioned here often, an emporium meant to meet all manner of needs and wants) the other morning just for the chance to think about unimportant things for few minutes. I bee-lined downstairs to the toy aisles for no reason at all. The girlie row summoned me - baby dolls, barbies, jewelry boxes, dress up clothes, etc. As soon as I honed in on the magic wands, that hot feeling in my throat came just as my eyeballs started to float. I was jerked back to when Cate was a little younger than Addie, when we'd stop in to Winkies and I'd be 100% present, in the here and now, as she deliberated about which $2.99 magic wand could handle the specific magic she needed to perform. After her decision, we'd take this new instrument of change home and make it worth the $2.99 and then some with our imaginations.

Cate's older now and suffice it to say, it takes more than $2.99 and flights of fancy to dazzle her at this point. Love her blue-eye dotted head, but things are a bit more granular as we approach puberty (and yes, I mean we - wish she could cross over without dragging me through as well, but no dice).

And Addie? Well, I don't know much about her imagination, to be honest. And she doesn't really play with toys. So my time with her is a little more complicated, even when we are just goofing around, it's a feat of analysis - figure out what she wants to do, for how long, can I turn it into a learning experience, what is she thinking, can she do this on her own, what communication is she motivated to use, how can I engage her on another level, what if I were a peer and not a mother, how would this work... Endless, really.

So I maybe cried in the Winkies lower level because the pink sparkly aisle doesn't apply to us anymore. We shop for our amusements at Best Buy or the therapy product catalogs. Not simple.

I am working on order, simplification. I have decided that if I'm to be on top of all the details mentioned above, I need to shell out and reorganize our house, and the office in particular. Our home is very small. Belongings of all kinds are in plain sight, even when it's "clean." That distracts me and keeps me a bit on edge. So. I'll get organized to aide my focus on each of the thousands of details that take us through a day.

I tore apart the "office" today. It's really a junk room with a computer and a desk in it. And about 7 million other odds and ends.

In doing so, I found a rocking chair - the rocking chair that Michael gave me for Christmas the first year we dated. Its simple, antique squeakiness is a beacon to me. Many thought it was an odd courtship gift as we'd only been dating a few months when he gave it to me, but neither Michael nor I found it strange at all. Not strange today either when I unearthed it from under chaos.

I cleared the clutter from its seat and dusted it. With each swipe the wood gained richness and dimension. I sang louder along to the music. I cleared the room enough to find a place for the rocker where it could actually rock without meeting obstacles (difficult in a room filled with everything that doesn't fit elsewhere). Oh, to rock without meeting obstacles - refreshing. But I did not sit down yet.

Addie came home mid afternoon. She had been on a play date with Mrs. Bautista. She saw the rocking chair and froze. Addie is a rocker if ever there was one. I imagined her climbing up and leaving me as she entered her own world of repetitive movement bliss. But she didn't leave me. Instead, she grabbed me by the hips - this means "your body needs to be somewhere other than where it is right now," and gently nudged me backwards until I had no choice but to sit on the rocking chair. She waited. I was sure I was supposed to rock and so I did. Yes, that was right. Once that met her approval, her tiny arms lifted up, making clear her intentions to join me.

After a bit of shifting, she found her sweet spot and settled in. There was no logistical need to hold on, gravity would take care of everything. But hold on she did - actively. And we rocked for a few minutes. Then a few more. Every so often her blond noggin tipped up to meet my locked down-turned gaze. Sometimes smiling, sometimes just checking on me. We were listening to Gomez. At times she wanted me to sing along, at others, she put her hand over my mouth with as much sensitivity as one can when they non-verbally insist that you please shut up for a minute.

We rocked and hugged. The room was chaos around us - piles here and there. Cords all over, dust clouds, things to be done looming. But all of that was decisively dumped off the rocker earlier. We were occupied with here. With now. With simple.

Addie looked up at me and briefly snickered. She signed sad and cry when she noticed the pools threatening to bail from my lower lids. Naming emotions is one of our games. But I said and signed "No, not sad. Happy and thankful."

Oh, I get it. Simple is underneath complicated. It's there all along so I need never fret its absence. Ok. Again, my wordless child, I appreciate your patience in doling out your messages at a pace in accordance with my ability to receive them.