Thankful for

First Day: He was so proud to have his pic taken with the backpack A passed down.

I took a little writing intermission during a few busy weeks. I think an update and some recent photos are in order today, especially for our far away family members....

...And determined to walk with it all the way out to the car.

K started preschool at the beginning of February. It was bittersweet saying goodbye to EI and transitioning to an unfamiliar setting where I don't get to watch his therapists at work, hardly ever see them in fact. After some communication glitches, two bouts of pink eye, and a string of colds, we are finally settling in. And I am walking the fine line between being my son's best advocate and just being annoying. I think I'll learn some lessons in tact and patience in the process.

Little-Big Boy

K seems to be doing just fine at school himself. His teachers say he follows the routine well, enjoys the other children, and likes to participate during circle time, eats his snack like a champ, and wants to do everything on his own. They hear a lot of new words coming along and are learning his idiosyncratic speech patterns. Consistency and volume are two goals for speech therapy right now. Unable to form many sounds still, K needs to choose consistent approximations for words and draw sounds out clearly and audibly. It is possible to have a two-way conversation with him now in the form of yes and no questions. It is also possible to catch decipherable phrases in the stream of babble he sometimes shares when telling a story or praying at dinner. "OO, Ord, Day" is  "Thank you Lord for this day." Thank you, indeed.

After working for months trying to get K to start saying "Mama" again (it was his first word at 1 year, but he dropped it from his vocabulary months ago when he started adding more words), we have reached a victory of sorts. I am sometimes Mom or Mama, but for a while I was mostly "Bob!" From another room of the house, I hear "Bob! Bob!" I am supposed to come running. At the kitchen counter I feel a tug on my jeans, "Bob!" On a good day, it's endearing, a funny story to share with friends. On a long day, it grates.

My sister Kait got a doll for Christmas one year, some kind that were all the rage with the five and under set. He has a crazy shock of blonde, curly hair akin to a miniature toupee or a small head of cauliflower. He has a particularly large bottom. He is not cute. Kait christened him "Bob Junor," for reasons unclear. We laugh about that doll to this day, since now my kids like to play with him. At holidays, out come the Bob Junor jokes, the ones only we think are funny. "Bob Junor, Met Life," someone extends Bob's dirty-pudgy hand out to me. (The name made someone think of an insurance salesman at one point.) The line, both well-worn and nonsensical, still curls us up into fits of laughter. So every time K calls me "Bob" in his little man voice, all I can think of is poor, naked, big-bottomed Bob Junor with the cauliflower hair--insurance salesman extraordinaire. That's me. At your service. Then I read a few weeks ago that "children with Down syndrome often call Mom Bob, having difficulty with 'm'" (Estreich 126). Huh. At least I'm not alone.

Why do we have to work so hard for a word we had and lost? One reason might be a mild but persistent hearing loss--we will know more in April after K has an extensive hearing test. But hearing aids may be on the horizon.

 At a Charity breakfast our friends put on a couple of weekends ago, I try to look useful as a volunteer but I'm really not that busy. When "not that busy" I tend to people watch. I check out the family with the middle school boy who has Down syndrome. I often watch families with older children with an intensity bordering on scrutiny. I am taking notes. What will twelve years old be like? Eight? Six? Heck, what will next week be like? The boy is small of stature. He eats quietly in his chair and from the look on his face, I know he is relishing every bite. He is also without vocal communication. But he can talk! I see him sign with his mother. And I see how his family all dote on him. I also see a mischevious twinkle in his spirit that our K shares, as he sidles up to me looking for more juice. I heard/saw his parents tell him "No more."

He looks up at me, head tilted to one side. He signs "apple," then "juice." He's grinning at me like I won't be able to understand him--an excuse to take more? "The juice keeper didn't know, Mom!" I look at him and grin back, "No," I sign. "All done!"

He smiles congenially as if I've told him to please help himself and side steps back to his dad to try to work one over on him. I love the exchange, this boy whose eyes are the same almonds as my K. And I am reminded. There is no set model for ages and stages for children with special needs any more than there is for typically developing children. Every child is unique. My notes yield not a category defined but an appreciation for a young boy I just met and very much like.

Snow Day!

Speaking of kids I very much like, our girl A, is doing just fine herself. She keeps growing like crazy--in stature and maturity. Enjoying preschool finally (for now?), she comes home with reports of preferred activities and a few friends she plays with. She's still our spitfire, testing the limits of permissible on a regular basis. We're looking forward to the upcoming art show she and her classmates have been working on all year. Besides school she's enjoying dance and swim.

Lately, we love how she assumes a big sister role when E is away at school, playing with and tending to her little K-love. She's sensitive to him emotionally in the way that E is sensitive to his physical wants and needs. It's very sweet to see her enjoying him and even competing with him at times. It adds a new, dynamic nature to their relationship that she can be both older sister and equal playmate depending on circumstances. At home she enjoys drawing, reading, and playing babies. Hot on her reading list lately are Robert Munsch books. She always has loved a silly story.

Backyard sledding

E is well into her first grade year and showing all the signs of a little girl emerging into a young girl. She tests limits like her sister, but in slightly more sophisticated and unnerving ways. She's always on the go, happy to get to school early and stay late, happy to play outside until the last streaks of light fade from the sky, happy to play involved imaginative games with her sister, happy to throw herself into swimming and piano. Never happy to call it a day, until sheer exhaustion weights her securely in her bed for the night. Gusto. That's my girl.

Complementing each other to get the job done.

"They complement each other so nicely," a friend who hadn't seen them in a while said this morning. And I do think that's true of my passionate, high-spirited girls. Two little kites taking flight right before my eyes. Every time they push against or up or away, I have to remind myself that this is the point. My job is to give them the tools so they can fly on their own one day.

Mark and I are holding steady in the exhausting whirl three children creates, but we're also asking ourselves some important questions about the future. "Where do we want to go, if anywhere, from here?" Not just in the physical sense, but in the big picture sense. Questions about education, career, and home have come up. Questions about K's future frequently come up out of necessity; when you parent a child with special needs, there is an urgency to both the current moment and the one ten paces ahead of you. I don't quite know how to explain it, but it's different than with the girls. So there are questions. These moments usually get me excited. I like the prospect of change. But Mark, who works within a different set of confines than I do (namely the confines of being the primary bread-winner for now) does not find as much appeal in the process of making big decisions. The biggest decision we make may be to stay right where we are. In the meantime, we continue to think about future needs and wants. There is much to be thankful for in this, since where we are right now is a good place to be and where we see ourselves going holds promise, too.

Bodie, our resident scoundrel :)