progress is playing with your food (& mine)

Little N has been on a "food jag" for the better part of a year (longer?). It got especially bad back in the spring when he refused to eat anything but yogurt, applesauce, & milk. That's what first prompted us to seek help.

Part of the therapy for this kind of thing is play. Play with food. Get messy. Food is not just a non-issue - it's light, easy, 3-times-a-day-or-more, silly fun.

In the last couple of weeks we've seen some new developments, like licking a slice of banana bread 10 times, putting a cracker in his mouth for a couple of seconds, speed-feeding me rice crackers, and stabbing satsumas. (His occupational therapist was so impressed when he demonstrated that last one. He WANTS to play with the fruit!)


Other parents will say, "The kid won't let himself starve." But kids with this challenge - will. Some of these kids can't stand being in a room with food out on the table. It's nerve-wracking for something so vital as eating to be a persistent issue for your child.

To me, it feels like it's already been such a long time for Little N to have such a limited diet. The therapists tell me it does take a long time and he is already showing these new signs of mastering the challenge of food.

Despite it all, Little N is energetic, happy, growing, very strong, stretching past limits we don't understand and engaging with the world in new ways.

jettisoning Gifted & Saved

Today was the last day of my Halloween Staycation week. Tomorrow I'm back in the office. Despite being brutally infected with the nastiest cold this side of the apocalypse we still managed to complete some household tasks and to enjoy some playful family time together.

The top of our to do list was purging the apartment and storage unit of excess. If we don't use it then we don't need it, and I can't deal with the clutter. Maybe having these things used to make me feel cozy or secure but now it just feels heavy. I want to feel light and limber. We packed up clothes, baby toys, kitchen utensils, unopened toiletries, magazines... inane odds & ends that I probably brought home in the first place. L filled the bed of a pick-up truck with donations for our local Goodwill. That was the easy part.

While L and N were napping, I sifted through fifteen years' worth of journals. Declared them all junk. When L woke up he took them straight out to the recycling barrels. All those years. All those musty words. Dumped.

Flipping through my former scribbles I recognized two pieces of me that I'm laying down and I'm relieved (light & limber) to see them gone: Gifted & Saved. I'm neither now. I'm pretty sure that I was never either one. But my childhood was dominated by these ideas and so my identity was cast in them. At best, I had strong verbal skills but the rest of my academics weren't anything special. On the other hand, I was steeped in Evangelical Christian religion and culture as a child and earnestly practiced what I was taught.

With each new level of education and development the dissonance rang louder. I stepped out of sync with my academic track in high school, wrestled with spiritual doubt, and questioned the religion's moral code. I was looking through everything I'd been given trying to find something true, something more, something that fit me. And these old journals carried that same struggle through my college major, friendships, partners, first jobs, volunteer work... My father's death was a powerful breaking point where I consciously cast off a lot of who I'd been raised to be but you can't live in the liberation of grief forever. The family reassembled itself. I reassembled myself and the old familiar ideas were still significant.

The two threads of Gifted & Saved, certainly thinner, remained and I traced those wavering lines through these old journals. They show up in how I compare myself to my peers - careers, families, activism, education, aesthetics - it's a long clunky spreadsheet of what I was supposed to be versus who I am today. They show up in my persistent attempts to participate in some kind of Christian community - I randomly bring my son to the Baptist church around the corner & don't forget that Quaker meeting I say I'm going to visit. They show up in the books and articles I read about new theology and alternative interpretations of atonement and Mary and... it goes on and on.

My son's birth, my growing into motherhood, and these recent months of evaluations and therapy for N are a years-long breaking point where chunks of my identity are cracking and falling away. In some places I chip at it and try to shape the changes. Not that an identity is a tidy static "it." At best, the early years after my father's passing showed me the fluidity and phases that are a self and a family. Even so, you can name some of your states and phases along the way. I am not Gifted, I'm ordinary as dirty dishes and a day job. I am not Saved, I love the people who gather at church, I bask in their faith, but the preaching makes me cranky and I don't believe a word of it.

These two words aren't true for me anymore and they aren't true for my little family. They were so important for so long and so I lay them down with respect and even gratitude. Today I need different words to express and to shape who I am. My little family needs words like that. I'm wary of the words that the school system will enter into my son's records. It's time to choose our own words and make them stick as long as they can be true.

first day of "chool"

Wednesday was N's first day of "chool!"

to the bus stop in Daddy's arms

On the bus ride (city bus not school bus) the driver announced on the PA system that she was so excited to be driving N to his first day of school. Pretty cool, right? It totally reminded me of our wedding when the captain of the ferryboat announced us after the ceremony. Another one of those wow life events and sharing that zing! with a group of strangers - surely they can feel and enjoy the electricity of the moment.

N's class is really small, a total of 4 boys and 1 girl, and Daddy stays with him for the full 2 hours (and it meets 2x/week). Another little boy, D, latched onto N as soon as kiddo got to class. N wasn't sure of D until D most awesomely crashed a large toy. Then he was impressed!

picture N made in OT

N's teacher is really strict, in a good way. Everyone must wash hands and help with clean-up throughout the class. N also receives Occupational Therapy and Speech Therapy as part of his school time. He enjoyed both of his therapists and showed off to them what he can do. There were a couple of bumpy events during class but N recovered and kept going. That totally counts.

Kiddo was loud & proud the rest of the day. Even when I got home from work hours later he was still excited. We went out to the pub to celebrate. N continued on his show-off mode, picking up Daddy's ginormous fork and pretending to eat with it.

big happy sigh. This is exactly the foundation of good work and little successes that we needed. This is what hope looks like for us.

serendipity

We had a really great meeting at N's new "school" this morning. We met with the Program Director, as well as N's Educator, Speech Therapist, and Occupational Therapist. This is the second time where we have had the good fortune of meeting with the program director rather than another employee, such as a nurse or our Family Services Coordinator.

The Program Director is both thorough in her work and personable with us. She's super-mega-competent. We so appreciate the time & attention she's given our family.

We discussed our concerns and corresponding goals for N's education and therapy. The team was very positive and open with us. They listened carefully to our ideas and anecdotes and were also able to suggest things that didn't immediately come to mind for us. Like, expanding N's use of consonants - yes! he needs that! - but I don't know if I would have been able to say it that way.

The Program Director was able to alleviate my anxiety about what happens when N ages out of this program. While she can't guarantee that he'll qualify for the public school system's program, it's highly likely that he will. There simply isn't enough time for him to get caught up on all the related areas that would dis-qualify him. So it's a mixed blessing and I can accept that.

So! N and L will start class on Wednesday! I'm nervous and excited, and a little tired from our big morning out. N did great today. He was content and played quietly at the table for the entire 1.5 hours of the meeting. Wow! Good work kiddo. And he said "bye" to each of the women as they left. Super sweet. I think they'll really enjoy working with him. (I do.)

lunchtime text

12:35 PM L: one last thing, he melted down at 12:03, I guessed it was food, but did not say it, he made eye contact and said "eat" and made the sign.

No, I don't want N to be melting down, but! Yes, I do so eagerly want kiddo to tell us what he needs and wants. This was a big score!

Tati & the airplane

One of the questions they ask us at, like, every stinking evaluation they do of my sweet boy is, "If you ask him to identify something in a picture, like 'Where's the cat?' will he point to it?"

No, he won't, so stop asking! Gah! It makes me feel badly that he can't/won't/doesn't do this stuff. Besides, don't you people read each other's notes and reports? Grrrrrrrr!

do you see N's little hand reaching for Tati?

But the other night N did something different. We were reading his favorite book, Numbers by Sara Anderson, and his favorite number 5 has a picture of 5 windows. One of those windows has a cat, just like his favorite pal Tati. N shouts, "TATI!"

he named her all by himself!

"Yes, honey, yes! There's a little cat just like Tati in that window! Good eyes!" Yay!! He identified something! I know, I didn't ask him to. He just wanted me to know the cat was there and he told me. I say that counts! (no pun intended...)

I recently pulled an unused mug out from the back of the top shelf to make tea for a friend. Rather than climb back up to put it away, I just added it into our current rotation. The next night, while I was sipping from it, N says, "airplane!" I was very confused, "Do you hear an airplane? Are you thinking about airplanes? Do you want me to get an airplane toy?" "Airplane!" He's looking at the mug... I glance at it. "Oh babe, that's a helicopter, but it's close. Good work." "Airplane!"

I put him to bed a little while later and made myself a fresh cup of tea. Looking more closely at the helicopter on my mug, yeah, it's a seaplane. Just like the planes N watches fly over us all day, everyday. I was so apologetic to his little sleeping self.

& then he kissed me

My son kissed me! The sweetest, proudest little kiss! He was so cute.

We were watching The Daily Show because that's quality programming for mamas & children and kiddo got up from where he was playing, ran over to me, I leaned forward and MWAH! He grinned and ran away. Then ran back! Stuck his cheek out for me to kiss it.

There have been a lot of great new things in the last week. The hyper-sensitive phase has subsided and N is just busting out of his shell. He says "mommy" now! My long desired word. I smother him with kisses every time he says it. He says "bye bye" really clearly to people, places, & things. He blows kisses. He's joyfully active. Daddy got him a little play-tent designed like a green jeep. N is crazy about it and spent a solid 30 minutes this morning going all Monster Truck on it having crashes. He jumps on the bed and makes little climbing challenges for himself. Today he navigated an artsy, sculpture-ish, uneven set of stairs on his own, finding the places where he could step up. We're stacking blocks and practicing with the shape sorter. We color together after a meal.

Little things he knows or has been practicing in play are getting out into the light of day. Most of all, I'm loving his efforts to communicate. I'm loving this new found vivacity and expressiveness. The "N" that we knew was in there is coming out.

I don't know how long this phase will last. Hopefully everything he's showing us now he'll be able to maintain and continue to progress. He is still sensitive. Yesterday's trip to the park was about 60/40 playing versus withdrawn or repetitive behavior when the place swelled with children and activity. And yet, I think he managed it better than other outings. I think it counts.

Tonight, when I put him in his crib, he hopped up right away, leaned forward, and then he kissed me. Nite nite, sweetheart. "Bye-bye."

simple colorful stretches

Tonight we painted a good end to a good day.

Do you see? N is stretching.

He used 3 colors, blended & layered them, and used 2 different types of paintbrushes. (This is all new.) A few times he would look at me questioningly while gently touching a point on the paper with his fingertip. "Yeah! go for it." He'd reach out with the paintbrush and color near that spot.

This new painting comes in concert with more babbling sounds and using those new sounds conversationally, as if he's speaking words. He's also using a few signs consistently to communicate with us about airplanes, more, milk, potty, and baths. He's playing more imaginatively, like with a little plush cat he's named Tati, or making a pair of pillows operate like the drawbridge we live near, or making a toy car go "ouchie" when he flips it over monster truck style.

These are also more delicate days for N. It seems like new skills & accomplishments come with a phase of heightened sensitivity to his environment. He reacts fearfully to loud noises. He fusses when we fall out of step with morning routines. And hunger puts him out of his mind. We comfort him & pack snacks.

The best part of our day is the hour or more after N goes to bed. We listen to him in his crib. He sings, babbles, practices phrases like "bye, see you later" that he never says during the day, and works with intonation like a cable tv pundit. And he just plays, pulling into his crib any toy that's within reach. So happy & secure. He relaxes into the child that we know is in there behind all sensory issues and developmental challenges. A funny, curious, beautiful, creative, much loved little boy.

the best boogies! (or The Boogie Hoodie!)

this is so great! look at the sleeves of this sweatshirt! look at the shoulder!
dried food &... boogies!

this means that kiddo can feel when there's stuff on his face
and he's figured out how to deal with it
and he's doing it by himself!

That's why these are the best boogies.

this is what progress looks like

Back in May, kiddo wouldn't step off of the blanket in his bare feet. The grass was too much for him to feel with his little piggies. Today, he eagerly helps me remove his shoes and socks so he can run and explore our favorite spot by the lake.
In our bare feet.

bring it on home

We've enjoyed some really fun accomplishments this week with N. He's started making the connection that the same things that he does out in the world at specific places - like making art at the Children's Museum or playing with food at the pub or climbing around at Gymboree - he can do at home. These activities aren't locked to a place and neither is he. He can do what he wants whenever wherever he wants to.

Wow! Do you see how that would expand how he expresses himself as well as what & how he can learn? It's really important. And... we're having fun doing it!

This morning we made art at home. I set up paper side by side on the doors of the art cupboard. Laid out crayons, markers, colored pencils, and paint (with brushes, kiddo still doesn't dig goopy fingers).

I worked on the one on the right.
N joined in moving back and forth between the two canvasses

and the floor.

Nice work!

And, did you know that kiddo had a piece in a local indie art show?

We think it's "Blade of Grass."
He is so zen.

on the spectrum

We've just learned that Baby N is "on the spectrum."

We're still not totally sure what that means, and I kind of wonder if anyone is totally sure of what it means.

I was shocked when the evaluator said it. She was the first person to say it out loud. I had expected her to tell me that he's super normal, just not average, and well on his way to catching up with speech and language, and his feeding issues, and the little social quirks he's got. Instead, she explained that each of those things, or maybe it's the constellation of them?, locates him "on the spectrum."

It feels like this open-ended challenge that we'll be wrangling for years, for the rest of his life?, wrangling with teachers and school systems and children and new young friends and their parents and insurance companies and scheduling therapy...

Yet, he's my same sweet funny bright curious little engineer baby. He loves numbers. He howls at the moon. He'll sit and figure something out til it's figured out. He jumps! He dances! He puts his cheek next to mine.

And he's on the spectrum.