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


angie said...

Addie....first of all you are adorable. You are also definitely showing your place in this world. It truly touches my heart to see that the other children understand so well what she likes and they go out of their way to make her smile. That made me smile today too! You go girl....keep on showing the world what you are made of! The wonderful thing about our children ( of the many wonderful things) is that they know that this is their world. They know that they belong here and that they are so very loved. We can learn so much from them!

Beautiful post Terri:). Thank you so much for sharing it. I check every day for a new post about your family. Does that make me your bloggy stalker friend?? Ha! Your family inspires me.

Jessica mommy to Alex/ RTS said...

Addie, you inspire me constantly, and Terri, you are my mentor in all of this. I love your courage, your goals, your confidance in Addie.
I am thrilled and honored to have youboth in my life!

Kristi said...

Smiling here. It is a beautiful post and I am so lucky that I had the chance to meet your family.

Tatersmama said...

I just came across your blog while looking up information on RTS. I'm a family daycarer in AU and I have the most wonderful, engaging little guy in my life... A little guy with who's doing his best to grow up - against all odds.
My little guy is coming back into care today after a 3 month stint in the hospital... and I can't wait to have him in my arms again!

Phillippa said...

Another amazing, uplifting post. Thank you Terri. :-)

Christine said...

I really enjoyed this post. Half way through reading it my wireless mouse froze up and I freaked out.. "NO no, I want to read more" I thought to myself. 5 minutes later I fixed it and was able to continue reading... Thank you Teri, you and Addie have given me so much hope, Addie is a beautiful child.

Brandi said...

Your insight into Addie's life and your desire for her independence inspires me every time I read one of your writings. You give me a different outlook when I look ahead to Nathan's future. I only hope that when Nathan enters school that he will have a team as wonderful as Addie's!

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