Kindergarten!!

The customary First-Day-of-School-Picture-in-Front-of-the-Garage-Door

Eva enthusiastically started Kindergarten this week. She had a great time getting to know a new school, new teachers, new routines and new friends (and seeing some old friends from Preschool). The staff tell me she has been doing very well with work time and is having fun at recess, in music and at the library.

She's been anxiously awaiting Kindergarten since she started to spend some time in the mainstream Kinder class when she was in Preschool. By 7:30 a.m. on the first day, she was dressed and dancing and hoola hooping around the living room and making snow angels in the carpet to her Party Mix CD I made for her (her favorite dance/techno and lively pop songs).

So excited she can hardly stand it! (This is at 7:30 a.m.--2 hours before school starts).

Eva is going five days a week for a few hours a day to a public elementary school that has the Primary Life Skills program for the district. I don't like the term "Life Skills" because it makes it sound like they're learning how to cook, make their beds and balance their checkbooks. They're little kids. They're learning the same things other little kids are learning. The just need a little more teacher time and assistance. I prefer a "Supported Classroom". So anyway, she is there.

There are two Supported Classrooms at the school with Kinders, 1st- and 2nd-graders combined. One class generally has the Kinders and those in need of more support. The other class, the one Eva is in, generally has older kids and those who have more skills and abilities. She is one of two Kinders in this class with eight 1st- and 2nd-graders. Other Kinders in the district don't start classes until this Monday, but since Eva's class has mostly 1st- and 2nd-graders, her teacher said I could bring her this week if I wanted to. Sure! The more school the better!

I'm glad she is in this class and will have the older kids from whom to model. I'm grateful that the staff recognized that she has the skills to be able to succeed in a more challenging environment. And that I didn't have to petition for her to be given the opportunity to be in this class, which I would have if she'd been assigned to the other class. I am very proud of her.

Hooray for new adventures!

Growing Up and Gratitude

     I'm composing this post in my head this evening while Eva slips into a snuggly slumber in my lap. They're so sweet when they're unconscious, aren't they? My memory recalls moments when she was a tiny baby (though she was never tiny) and I would hold her in my arms in this same wide chair. I would look out the window at the broiling clouds and get lost in thought—or no thought—with Eva’s newborn breath making a spot of my neck warm as she slept on my chest. Soft quiet inhalation, soft sighing exhalation. 
     I gazed at her, memorizing her every millimeter, her every angle. I watched her eyebrows come in and how the deep blue of her irises had more and more pale blue flecks in them as the days passed. The flecks slowly decorated her irises but left a thick deep blue ring around the outer edge. I gazed at her. She gazed at me.  She curled up in my embrace and inside my heart and slept deeply.
     And now, I gaze at my little big girl resting her head against my chest and smile to myself. She is changing, growing so much. 


1.   She has just grown out of her car seat and we put her new booster seat in today. She was SO excited and felt very grown up! 
2.   She's lost three teeth now (we found the third one in her bed one morning after it fell out overnight) all in a row. She sticks her tongue through the gap and smiles widely. As before, she took her Tooth Fairy money to the Farmer's Market and gave it to one of her favorite buskers: Richard, a kindly man in a pressed white dress shirt and Carhartt overalls who sings old southern work songs and honkey-tonk country, a capella. 

3.   She has been totally interested in outer space lately. She wants to go there and to learn all about it. I'm ecstatic about this because astronomy is one of my favorite subjects to go on and on about (after meteorology and maps). So we looked at NASA images of the moon surface, the earth, the sun, galaxies, nebula. It. Blew. Her. Mind. I talked about how there is no sound in outer space, which I knew would be really intriguing to her since she is skittish about noise. We got a book at the library about Mars and a Bill Nye DVD about the Moon.  I'm gonna tell her everything she can handle about astronomy. 

4.   Her recent favorite show to watch is Stomp (a dance troupe that uses the body and ordinary objects to create a percussive theatre performance). Everything in our house is a percussive instrument to tap or bang on. We've collected an assortment of sticks, brooms, tubes, tubs, boxes and plastic bags for her to stretch her creativity. One of the acts the performers do is an increasingly difficult call-and-response rhythm with the audience. The other day, while we were in the kitchen, Eva was hopping and stomping and clapping, as per usual. She turned to me and clapped twice. Pause. Clap clap. Pause. Clap clap. I responded: clap clap. She squealed and clap-clapped again. I responded. She tried out a few other rhythms and jumped up and down laughing with joy when I repeated her rhythms back to her. Something major connected in her brain with this one!
5.   I was in the shower; had just turned the water off. A little hand pushes the shower curtain aside. She is holding a granola bar. "Here mommy! A granola bar for YOU!" "Oh thank you honey! But I don't want one right now--I'm all wet." She stares at me, arms limply at her sides, a granola bar in each hand. She brightens, "I have a granola bar today, too! You help me open it, please?" I tell her I will after I dry off. She stares blankly at me again and toddles off. When I come out in my robe, there are two granola bars (still in wrappers) on the living room floor and she'd moved on to something else.  
6.   She was "helping me" fold a load of towels. I showed her how to fold a washcloth--two steps. She was so excited and practiced over and over and over, talking her way through it. Joy for new small things!
7.   I had a hamper full of darks on the couch to fold. She dumped them out on the couch (Oh! Is she going to help fold?); took the hamper to the floor, climbed in and watched TV.


Eva starts Kindergarten tomorrow. She's back at gymnastics next week and will be spending an afternoon a week at Montessori soon. I'm feeling blessed, grateful and smiled upon. I was sweeping out the garage the other day and focused on feeling gratitude--not thinking the words or lists of things I'm grateful for--just feeling. 

The Return of Fish Face

For those of you who knew Eva as a baby, you may recall that she often made a fish face. Like, all the time. It was pretty remarkable considering her massively chubby cheeks.

She did it for a few months and stopped. And then forgot how to make it, couldn't get her cheeks sucked in enough, her lips puckered enough. Well, I'm happy to announce that the fish face has returned!

A couple weeks ago, she just started making it again. Often. Like, all the time. Maybe they were working on it at school or in speech therapy? At any rate, it warms my heart to see her little pucker-y face again. *muah!*

A small tirade followed by little celebrations...

Now, I know I don't post here as much as some of you in the blogosphere would like. It's not that I don't marvel at the joy and my blessings every day. It's not that I don't want to share them with you, my friends and strangers. I don't write here to share every time Eva has a cold or the days when she and I aren't getting along or the stresses I feel as a mother to this child (which are great sometimes but I have another place for those words). I am keenly aware of airing my family's dirty laundry for the world to see and, being a private person, I will not do it.

I do not wish to hold up Eva's accomplishments as a means of comparison with other children with Down syndrome or other disabilities or with typically developing children. One of the mantras I wrote for myself very early in my motherhood with Eva is "Do not compare." I realized quickly that I would destroy myself and my family if I became consumed with comparing every aspect of her existence with other babies and with the baby I had in my mind that I was "supposed" to be a mother to.

This blog is a place for celebration. For learning, rejoicing, and honoring the things that make Eva the fabulous little girl that she is. I'm not here to prove anything to anybody or to persuade or to garner pity. I am here to share little glimpses into the heart of my girl so that you may feel your heart swell for a moment as mine does every day that I am blessed to have her by my side.

Here are a few examples of Eva's fabulousness:

--A couple weeks ago, Eva called me, for the first time, "Turkey Lips" and laughed hysterically. It caught me off guard and I laughed, too. I don't know where she got that phrase or why she thinks it's funny but she did. She's only said it that one time.

--(In a breach from my preference to not share medical news...) Last week, we thought she was getting a bladder/urinary tract infection. After she told me her tummy hurt and pointed beneath her (super cute outie) bellybutton, I explained to her what her bladder is and how it works. Basic, simple sentences. She nodded and processed. Then she told the story back to me to further process it. She said "My body make potty and fill (b)ladder, a balloon, fill up, up, up and POP!" She laughed joyfully as if balloons filled with shiny confetti had just exploded in the living room. OK, no, it doesn't pop. I told her again, realizing the comparison to a balloon was leading her to this conclusion. She told the story to me again, this time to make sure I understood how her bladder works. "Fill up, up, up and...POP!!" Hahahaha!! Whee! OK, think what you want. What's the harm? It won't actually pop.

--Then there are the rare and precious jubilant expressions of unabashed sudden nakedness on her part. She even puts her clothes in the hamper when she streaks. She's so tidy. Or well-trained.

--Yesterday morning, waiting in the driveway for the school bus, she politely asked me to pick her up because the chilly damp wind had picked up. I held her and we listened to the quiet on the street, the different birdsongs. She put her warm hands on either side of my face and nuzzled my nose and giggled. We got to talking about colors and finding things outside in different colors. I said, "Find something brown. Do you see something brown?" She said, "That tree. JJ's house. Dirt." I said, "Find something purple." She said, "Our house!" (Our house is periwinkle). She gasped and said, seriously, with her hands on my cheeks, her face an inch from mine, "Mama! Our house purple (like) fruit smoothie!" Yes indeed, Eva! Eva enjoys fruit smoothies I make with blueberries, among other things. We laughed at her genius.

--This evening, Eva and I were assembling Valentines for her class party. She was practicing lines and circles on a piece of paper while she waited until it was her turn to write (with my hand to guide) her name on each Valentine. I was sitting next to her, writing kids' names on Valentines. She said, "Line. Line. Across...that 'H', Mama!" Oh, holy crap. She wrote a capital 'H'. She's never purposefully written a letter before (that I'm aware of). We celebrated and laughed. And then she did it again. And again. And again.

What a charmed life I live to be able to celebrate and laugh every day. Thank you, Eva.

Put a Smile on Your Face

This video of Eva dancing to KT Tunstall's Other Side of the World always makes my heart swell. She had just turned 2 years old; it was only a couple weeks after a 10-day hospital stay, very sick with RSV and pneumonia. She was still a year and a half from walking but being on her bum certainly didn't stop her from exploring her world and enjoying herself. I appreciate the reminder to feel joy for what you have and to follow your heart's longing. Thank you, Eva.

(She signs "music" at the end).

Blackberries!

Just a quick post to express my gratitude that Eva loves blackberries. There are so few foods that she really LOVES and meal and snack times have always been challenging. So hooray for blackberries!

Today, Eva and I took a "stroller walk" to the grocery store for a few things and she spotted blackberries along the trail. They are quite abundant in our part of the country and the bushes are heavy with berries this time of year. I love the smell of blackberries in the air when out for a late summer stroll. How lucky we are to live here. I parked the stroller and started gingerly plucking blackberries while Eva reminded me "no red ones, mama. Just black". I put a small handful in her lap, maybe 8 or so and went back to picking some for myself. By the time I'd picked 2 or 3, she was chirping behind me, "More, mama? Can I have please more blackberries?" I swear, the longest sentences she puts together are for asking for blackberries. So I put another pile in the hem of her dress, like a little basket for berries. Two or three berries into my picking and she's asking again for more, purple juice smeared down her chin, her fingers dyed purple. She doesn't eat anything with such gusto! Hooray for blackberries! (Though I should add it was the same earlier with raspberries and blueberries. Off the bush and into the mouth).

She ate probably a pint or more on our stroll today. I picked another couple cups and took them home. Later this evening, she came to me at the other end of the house and put a blackberry in my mouth. Presuming (correctly) that she must have dragged her stool to the kitchen counter to reach the bowl of blackberries, I went to check that there weren't blackberries squished into the carpet. Nothing in the carpet (that I saw anyway. I'll probably find that next week when the berry starts to mold and the stain is good and set). There were, however, purple fingerprints on the counter near the bowl and down the front of the dishwasher--and all over her face and fingers and some on her jammie pants. When I asked her if they were good she just giggled and held her fingers up for me to wash: "blackberries! Yummy!"

Indeed, my sweet girl.

Eva's Library Picks

We go to our wonderful Downtown (Bellingham) children's library regularly for fresh reading materials. Eva is old enough now to thoughtfully pick out which books she wants to take home, go to the counter and up the stool, hand the books to the library staff and say "these books, please". Sometimes, she tells me she's done with the library by haphazardly yanking books off those easy-to-reach shelves while I scramble behind her trying to re-order her chaos and try to slow her down. On our last trip to the library, we came home with five books. That evening, we pored over our new pile of books and I found that TWO of them made me cry as I read them. OK, I'm not generally one of those cry-at-the-commercials weepy sorts of people, but I do have a soft spot for a sweet children's book--especially one (or TWO) that my daughter thoughtfully picked out just for us.

The first book is called A Name on the Quilt: A Story of Remembrance by Jeannine Atkins. It is a beautiful story about a little girl and her family gathering to assemble a quilt square for her gay uncle who died from AIDS (this is a children's book, probably good for mid-grade school age). The family, including her uncle's partner, talk about the uncle as they assemble this quilt square made from pieces of his clothes, to be included in the AIDS Memorial Quilt. Oh jeez. Kleenex, please. (The library system has only one copy of this book, and it's at my house till June 14. Sorry!)

The second story, which I highly recommend to my many friends who parent a child with special needs, is called Ruby In Her Own Time by Jonathan Emmett. This tender story is about a family of ducks and their littlest duck, Ruby. She hatches last, is small and doesn't do what her siblings are doing. Her parents ask "Will she ever...?" and, of course, the answer is "yes, in her own time." Aaah. More Kleenex, please. What a gentle reminder to relax; that Eva will do many things...in her own time. (The library system has several copies of this book).

This reading experience with Eva was so beautiful (for lack of a shinier, more energetically glowing word) and reminded me that 1) my girl is a perfect, radiant little being; 2) I am so SO blessed to get to spend my life with her; 3) the universe will provide for me what I need, when I need it and I'd better pay attention because it might be in the form of a children's book (or two).

Eva Reads Her First Word!

Yes, you read that correctly. Eva read her first word this evening (that I'm aware of anyway. She has a way of "yeah, I've done this FOREVER. What's the big deal" about her sometimes). We were reading stories before bed and I said "What's this word?" like I often do but she's never answered before. I point to each letter. "c. a. r.", she says. "Right!" I said, "what's that word say?" "CAR!" Oh my gosh. Yes, it DID say "car"! Holy cow!

Mind you, this exciting event hasn't come out of nowhere. She has always loved books and preferred looking at words over pictures (going way back to a few months old). During all the pre-preschool assessments and much to my annoyance, I had to prove it to a school official that she knew 18 letters just before she turned three. Eva has known all the letters for several months now and many letter sounds. She's been able to identify store names on the building and on top of receipts for a couple years now. We read to her. We point to the words as we read them. We have her read each letter in a word, going left to right. I've had a suspicion that she could read some words for awhile but have always explained it away.

Back in February of this year, I had a conference with Eva's preschool teacher. She told me that the woman who teaches the resource room came to the classroom for a visit one day (she doesn't usually work with the littlest kids) and she and the teacher got to talking about Eva and how she knows all her letters and really seems to absorb everything around her. Eva did a few tests in the resource room and, to everyone's joy, she scored at a kindergarten level for pre-reading skills! So the teachers started Eva on a reading program, the beginnings of which consist of matching like pictures, with other pictures as distraction. Then moving on to matching simple letter combinations, which gradually get more complex, to see if she can sort through the visual stimuli. The next step is a Reading Mastery Program with chunks of words (it stresses learning to identify the whole word, as opposed to spelling it out). So in addition to reading at home like we do, pointing out words, having her read the letters to us, we also started to label things in the house (bed, couch, table, etc.) so she could get used to seeing the words attached to things she's familiar with.

I am so grateful for wonderful teachers and staff who recognize that Eva can handle more challenges and not dismissing her desire to learn until she's "older".

What Eva taught me: to not think I know what she is capable of; to not think "oh, well that skill is for older kids, not her"; to set high standards and beam with pride when she meets them.

My little girl, 4 years, 2 months and 20 days read her first word. Car. It's music to my ears.

Perspective

First, a note: I know I haven't posted for awhile and it certainly isn't because there has been nothing to share. But now it's a month's worth of little things all smeared together. So back to today...

I picked Eva up a little early from school today so we could go to a dear friend's retirement party. Eva has been the Morale Booster/Therapeutic Hugger/Sweet Heart-Melting Charmer at my work since she first came when she was 3 weeks old. Everyone at my work has been incredibly loving and supportive of our family from, literally, the DAY she was born and our lives changed forever. Each coworker ("family friend" I should say because they are so much more than coworkers) has shown their love for and acceptance of us in their own way. It was wonderful today to see everyone together in one space, celebrating our dear Lynn and his new adventures as a retiree!

Back to school...we left the classroom and headed down the hallway. Eva was walking all by herself, carrying her backpack and a weep tried to escape from my throat. It was only last spring, when Eva started school, that she could walk only about halfway down the hall, holding my hand(s), before her legs would tire and I'd carry her the rest of the way. And that was a huge accomplishment. Today, I watched my little baby walk BY HERSELF the entire length of the hallway (it's about 100 feet, I guess?) No hands held; no falling; no brushing the wall for support. She was charging ahead on her own, taking a piece of my heart with her.

Another day, another reason for celebration. How lucky I am to get to celebrate so often.

Joyous Day

Two exciting things happened today. Two events that will change my life and the lives of many for the better. It is a day to be hopeful for the future and to claim a renewed sense of purpose, determination and honor.

1. Barack Obama was elected the next President of the United States by a WIDE margin; and

2. Eva has finally decided that she can successfully drink from a big girl cup (i.e., not a sippy cup with a lid).

It's a very big day in our home. Share the joy with us.

Hope.

I heard this story on All Things Considered (NPR) this afternoon while I was waiting in the car during Eva's speech therapy session. Not only did the details this man expressed ring to familiar and true to me and our experience, but I thought: the more stories of families raising children with special needs that are out there in the mainstream media; the more citizens are educated and enlightened about the challenges we parents face and the many ways our lives are just like theirs--the less I feel alone.

I feel more understood as a parent, and more accepted as a family. This is what it means to be supportive of our family and those like us. We are all families--special needs or not--working as hard as we can to raise beautiful, compassionate and intelligent children.

Thank you for taking the time to educate yourself a little more and to share this with the people in your life.

When You're Weary...Feeling Small...

If this doesn't warm your heart, well, I don't think anything can. Biased? No. See for yourself.

Mz. Independent

Eva and I were running errands today. She was feeling the need to continuously express her fervent opinions to me and I was thinking "OK, let's get thru this and get home!" At Fred Meyer, our last stop, nearing the finish line. I was gently but firmly dragging her (she insisted on walking but was stopping every couple feet to complain) from the bathroom toward the bank of shopping carts, sharing knowing smiles with other moms. In front of Playland (where you drop your kids to play with their toys for up to an hour) she stopped dead in her tracks, the soles of her shoes suddenly stuck to the primary-colored tiles. "C'mon, honey", I cajoled. "Play mommeeeee!"

I'd never taken her to Playland before and she'd never show any interest in going. So, OK. Let's do it. She went thru the door and was busily playing before I'd even signed my name. Walking away to get a shopping cart, I could hardly keep the smile from my lips. I was free to shop without a whining child--for the next 60 minutes. But I was also proud of my big brave girl and my heart swelled with love. I dawdled thru the store and picked her up 45 minutes later. She had a great time and was in much better spirits when we left.

Once we got home, I got the wagon out to put all our bags in and pull to the house. Usually, she sits in the wagon with the bags and we make only one trip from the car. Today, she wanted to help. "Push, mommy, push". I was going to have her walk holding my hand while I pulled the wagon, but she had a better idea. She cruised (holding on to the wagon and walking sideways) from the front to the back. "Push, mommy!" I pulled the wagon and she walked from behind, pushing all the way into the garage. Cruising and walking while pushing something are both skills we are practicing. I was so proud of her that a) she did it and b) she came up with the ideas all by herself. Then she helped unload the groceries in the kitchen, ate miniscule bits of raw broccoli and scooted away with the bag of chocolate chips.

Life is so good on the days when I can enjoy the little things like these.

My Time

A few people have asked me recently, "So, what do you do when Eva's at school?" Well, I do whatever I want. Whatever I want. I don't stay home very much. I do things that I can't do with her or are easier when I'm by myself. This week, I explored hilly, dippy, woody trails that are too bumpy/narrow/steep for her stroller (e.g. Arroyo Park, Whatcom Falls Park). I run or walk until the songs from Signing Time stop playing in my head to the beat of my footfalls. I go until I get into a zone and then I keep going. I don't listen to music so I'm alone (alone!) with my own thoughts. I compose essays in my mind, like this one. I notice the shiny green buds on the trees and hear the birdies calling to each other in the canopy over my head and know that spring is coming.

Today's trail was great--knotted with roots and rocks, hills and dips, curving around trees. A natural trail. Not some smoothed out, gravel-packed, wide boulevard of a maintained trail. Those are great for strollers but when I'm alone, I want to get off the trail and onto something more exciting. This trail had a long sweeping railroad tie staircase that was fun to run down and leap up a couple times. And a smooth blue-green pond that fell over a waterfall. There were trees everywhere and duck pairs hanging out in the morning sun. Ah, deep breath. On a narrow bridge over the waterfall, I meditated and stretched for a bit. The sun warmed my back and relaxed my muscles. The rush of water drowned out any white noise of civilization and the swirls and bubbles focused my vision to the Now.

Then, I hopped and walked briskly back down the trail, up the stairs and walked as fast as I could back to the trail head. There, I met an elderly Russian gentleman whose truck broke down (his radiator, I think). I offered him my cell phone but he said, in choppy thick English that he didn't know how to use one and needed a tow truck. So I phoned a couple places and got him a tow truck with only 10 minutes to wait. He was so grateful when he cupped my hand between both of his strong old man hands. His voice wavered a bit as he said, "Thank you. Bless you." over and over. It feels so good to do something for someone when my only reward is this fuzzy feeling.

So this is what I do when Eva is at school. I also take a shower, eat bread with peanut butter and honey and drink a cup of milk after getting sweaty. I write. I don't do chores (though I organize them in my head) or run errands or talk on the phone. I don't get on the computer or idly flip through a magazine or do other time-sucking things. I do this: sit on the back deck and write and soak up the sun (in jeans and a sweatshirt--it's not spring yet!)