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ETA— For my visually impaired readers, these are two pictures of Nik drinking a yogurt smoothie through a straw all by himself. This is big, big stuff.

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Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
Natasha Bedingfield ~Unwritten
On top of the recent escalation of Nik’s mystery pain, he’s begun having a really difficult time lately at PT and OT. We have no idea why; I’ve been with him nearly every single time and if I wasn’t then Niksdad was. Nik used to laugh and clap and squeal with glee when we pulled up in front of the office. For the past three weeks though —whether in conjunction with the escalation of his pain episodes or for some other reason entirely —Nik has had complete meltdowns each time we go.

Things progressed from Nik screaming and crying as soon as we walked through the door —and proceeding to then thrash and slam his head on the (carpeted) concrete floor— to having a complete screaming, crying meltdown in the car as soon as he realized where we were going (based on the route we took). On Tuesday of this week, Nik lost it shortly after we left home; it’s a six mile trip each way. We decided to discontinue his playgroup because it got to be so bad; I think he was freaking out some of the other moms and one or two of the kids, too.

Anyway, yesterday was no different —at first. As soon as we pulled out of our neighborhood and onto the main road, I saw Nik’s face scrunch up in the pre-meltdown expression. Since he’d been in a great mood thus far all morning, I knew it wasn’t from pain; I started to distract him by singing songs from Signing Time videos —over and over and over. It worked to not only distract him but it got him laughing and clapping and trying to sing along. (You should hear his rendition of “…Signing Time with Alex and Leah, come and play…;” it’s utterly adorable!) I thought I had found a magic solution —until I pulled into the parking lot.

Interestingly enough, Nik cried and screamed but he cooperated with me. He didn’t kick and thrash and roll on the ground as he has done in the past few weeks. He sat down in a chair at my request, took off his shoes and coat, and then ran screaming…to the playroom! There were many bumpy and hysterical patches but, overall, Nik did really well. Miss D, our awesome OT who is now fully certified in sensory integration diagnosis and techniques, followed his lead and found ways to turn each struggle into a new game. By the time we left, Nik was smiling and happy. He spent more time playing one-on-one with Miss D and really paying attention to her —her eyes and her face especially, and he even gave her a kiss when we left! Then he turned around and wanted to go back inside again! So we did that for a little bit; I really wanted our leaving —and Nik’s experience of entering the building, too —to be joyful for him.

I am happy to report that it worked. In fact, Nik spent the entire rest of the day being giddy and giggly, affectionate and funny, and as cooperative as any willful toddler can be in one afternoon. In short, the rest of the day was delightful! But it gets better…

We had a feeding therapy session in the afternoon; Nik’s nap was cut short —always a crap shoot —and it was a decided change in routine which I wasn’t sure Nik would handle well. You guessed it; I was wronger than wrong! I think I can say without reservation that this was his best session ever. EVER.

Maybe it was our visit to the neurologist on Thursday, followed by the bloodletting —er um, visit to the lab— for a multitude of tests. Or perhaps the moon and stars were in perfect alignment. Whatever the reason, Nik was a total superstar with Miss M. To quote Miss M, “Nik’s the best speech therapist I’ve ever met!”

You see, Miss M has been working with Nik to teach him the necessary oral motor skills to actually take a bite of food. Progress has been slow. It’s only been very recently that Nik would even tap an apple wedge against his top teeth, let alone let any other food come into contact with them. He still guards his lower teeth with his tongue even when he’s sipping from a straw. We’ve been doing exercises with his chewy tubes to strengthen his masseter muscles as well as to try to reduce some of his oral defensiveness.

The game plan has been to gradually move through stages:

1. accepting the tube near the back of his jaw, followed by;
2. five consecutive bites on the tube at he back of his jaw on each side, then;
3. inserting something crunchy like a potato stick inside the tube and repeating the bites at the back of the jaw to introduce the sensation and sound of crunchy solids.

The idea is that Nik would gradually tolerate the sound of the crunch —which startled him terribly once before— and allow him to get the tiniest bit of dust-like crumbs on his tongue. This would then lead up to:

4. taking multiple bites on the tube and crunching the contents and then;
5. voluntary biting in the front of his mouth, followed by;
6. biting and crunching along the full range of his mouth.

You can see where this is going, right?

If I told you that we’ve only recently mastered step two, you might understand why Miss M and I were both utterly speechless yesterday when we introduced step three and Nik took off like a champion thoroughbred and raced through the entire process —all the way to step six —completely independent of any coaching or input from Miss M! Multiple times.

As if that weren’t enough, Nik showed off his new growing sign language vocabulary for us; he can now sign eat, apple, please, thank you, more, shoes, and cat. He is close to mastering share, cheese, and bye-bye. Yesterday, we added another emerging sign to the list, too! But let me back up a bit, first.

Nik’s current manner of asking for things is to grab our hands and direct us toward the object he wants; sometimes he wants us to perform a task such as opening the buckle on his lap belt or taking off his shoes. We are trying to pair Nik’s non-specific requests with at least an acknowledgment. For example, when Nik drags my hand toward his lap belt I will say “Oh, you want Mommy’s help? If you want Mommy to open the buckle show me ‘please.’ Sign ‘please’ for Mommy.” As I say this I am also showing him the signs for open and please. (Nik doesn’t sign yes so we use please in its place.) When he signs please by patting his chest, I open the buckle and praise him.

The most important element is that we make Nik acknowledge and confirm what he wants. He is becoming much more consistent with this. When and where we can, we try to introduce new signs. So when he “asked” me to open his lap belt yesterday at the end of therapy, I asked him to show me open —fully expecting that he wouldn’t but that we would make a few attempts before we defaulted to please. You could have knocked me over with a feather when Nik responded with a sign which is clearly his rendition of open and then followed it with the intonation of the word as well!

Yes, I got teary.

Meanwhile, Miss M needs to completely rewrite all of Nik’s feeding goals and some of his speech goals. His augcom devices have finally been ordered and should be in soon. At this rate, I suspect Nik may outgrow the need for those specific devices pretty quickly. We are going to start working on photo cards soon, too.

In other areas, I think I’ve mentioned before that Nik is beginning to really cooperate with simple directions such as sit down, give it to me, give Mommy a kiss, come here (not as consistent but I think that’s more about willfulness!), and the like. He is also making big strides in self help skills such as putting on socks and shoes —with help, of course. Nik also practices taking off and putting on his own shirt nearly every chance he gets —sometimes with very humorous results.

So, as Kristen reminds us in this eloquent post, our children’s stories —indeed, all our stories —are still largely unwritten. Nik’s will, I suspect, have multiple plot twists and more than a few cliff-hangers before it’s finished. Just when I think I am in control of the plot, my main character throws me a curve. But then, I wouldn’t enjoy the ride half as much without a little excitement, right?

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There’s something talkin’ in the wind
Whispering through the trees
That feeling in my bones again
Just puts me right at ease

It takes me back to all the times
I’ ve been here before
But crossroads, old familiar signs
Tell me there’s something more


(A Change In the Air ~ Clint Black)

There does seem to be the scent of change in the air lately. As I wrote in this poem, it feels like spring is finally coming after a long, dark winter. I don’t just mean this particular season; I mean a winter of the spirit, of the soul.

It feels as though we are on the cusp of some big breakthroughs in many areas with Nik. Since we decided to take him out of school this past autumn (you can read the saga here, here, here, here, here, here, here, and here), he’s made such remarkable progress in all the ways which inspire hope and joy in my heart. No, Nik is not yet potty trained or eating by mouth; he still has a way to go in those particular areas. But he has made such great strides in connecting with and integrating his environment, connecting on a deeper, more intimate level with so many people —and differentiating between us all.

The bonds between both Nik and his dad and Nik and me, have become so strong that we are no longer peripheral to his daily activities —no longer merely the people shuttling him back and forth to appointments, changing him, feeding him, picking up after him; we’ve become central figures —the ones he wants to play with, to dine with, to hang out with. The ones he misses when we are gone from his side for more than an hour or two. The joy in his little face when he hears my voice when I come home from the gym. The gleeful way in which he drops everything and races to the gate when Daddy comes home from school or work; the squeals of delight when he sees his coat and knows he is going “Zoom-Zoom” —off on an adventure with one or both of us. The deep, crinkly-eyed laughter we share as he looks into my eyes when I tickle him or dance with him, or teach him how to flip backward off my lap to do a standing somersault.

The connection goes so deep, the current runs so strong and true that it makes me weepy nearly every time; we’ve waited so, so long for this connection. It feels fresh and new and exciting every day.

Nik has come light years in a few short months in the way he communicates and cooperates, as well. Nik has progressed from completely ignoring our requests such as “Hand me the red square” when we are playing with his shape sorter, for example, to not only complying roughly seventy-five percent of the time but to also no longer simply throwing his toy over the gate when he is finished with it. Now, he will bring the toy to the gate and, if one of us is in view, he will babble or make some sort of noise to get our attention and then hand us the toy.

I realized just yesterday, as I watched him try and fail a few times to get one of the pillows from the sofa over the gate, that Nik’s tolerance for frustration is increasing; he’s developing more of a determination to persevere. He still gets upset when certain things don’t cooperate with him, but —by and large— it seems that he makes so many more attempts at things before he falls apart if he cannot do it. He is more easily calmed down in the aftermath, as well.

If I see he’s very frustrated with something, I’ll let him have a bit of a tantrum over it and then I’ll come into the room and simply say, “What is it, buddy? Can you show Mommy what you want?” Usually, he then engages with me to help him problem solve; I am trying very hard to not simply do things for him any more. Nik has more than proven he is perfectly capable of figuring things out, but sometimes he just needs a little reassurance that he can, in fact, do it. Not terribly different from any other four-year old, I imagine?

I am very excited about getting Nik’s communication devices; I haven’t written much about that because I didn’t have any idea how long it would take or what to expect. We are completing the paper work to order the devices recommended during his AAC evaluation at the end of January. In the meantime, though, I just found out today that the local branch of our statewide assistive technology initiative (DATI) has both devices available for us to borrow for up to two weeks at a time. If no one else is waiting for them, we may be able to renew them for an additional two weeks which should nearly cover the processing time for Nik’s own devices. I’ll tell you more about the devices and how we can use them in another post a little later.

In the aftermath of the EEG fiasco earlier this week, our fabulous new neurologist has made arrangements for Nik to have an ambulatory EEG done locally —this coming Wednesday! We are hoping that the results will give us some more information about Nik’s odd, recurring pains. I truly don’t think they are seizures but it will be good to have the results to rule it out.

Dr. G recently increased one of Nik’s seizure meds —and we’re seeing some positive changes, thus far. The increased dose does tend to make Nik a bit drowsier —though you’d be hard pressed to tell during the day! If you didn’t know Nik and watched him play during the day, you’d think he was a fairly energetic boy; I can see that he is a bit less frenetic and is able to focus on one thing at a time for longer periods. He also takes slightly more quiet breaks and will lay down to play with a toy for a few minutes before he jumps back into the fray.

Where I really see a change is that he is napping again —up to two hours at a clip, if I let him! And it doesn’t seem to interfere with his ability to fall asleep at bedtime. Nik is averaging about ten to eleven hours a night; I wish I could say he is consistently sleeping through the night —but I am hopeful that he will again! The best part though is that both Niksdad and I think we are seeing much less seizure activity since the increase. It’s only been four days so far, but it’s a good sign.

And, of course —as you saw earlier this week— the eating is progressing very well. Now, mind you, we’re nowhere near even being able to count the calories in what Nik is eating and even farther away from thinking about losing the feeding tube. But, the progress Nik has made in the last couple of months is unbelievable. It’s as if he is constantly challenging himself to try something new.

The key, I think, has been in recognizing and honoring his need for autonomy; Nik wants to feed himself —which is right in line with his extremely strong spirit of self-determination! It seems that, as long as Nik has his own utensil —and, lately, his own bowl —and can have some measure of control over eating, he is a willing participant. I might even venture to call him a joyful participant. He still struggles with large quantities of more than a half-teaspoon at a time, or with chunks larger than a grain of rice; he hasn’t quite figured out the whole chewing mechanism but we think he is on the way. Where, a year ago Niksdad and I were running on the faintest vapors of hope that Nik would ever eat by mouth again, we are now both excited and enthusiastic. Mealtimes are wonderful family times again.

Many would say that our life goes at an insane pace —and I suppose they would be right. Between Niksdad’s nursing school, nursing clinicals, and work and Nik’s multitude of therapies, playgroup, and swimming —with the very frequent doctors’ appointments thrown in for good measure— and my renewed attempts to get in regular work outs at the gym and maybe even a date with Niksdad every once in a while, I guess it is rather frenetic. But it feels like the pace of a family finally hitting its stride after so many stumbles and false starts; like we’re actually gaining some ground right now.

And that’s a pleasant change, indeed.

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Eighteen months ago Nikolas was eating. It wasn’t a wide variety and it wasn’t anything that involved any sort of chewing or significant oral motor effort —all pureed baby foods with some rice cereal mixed in for extra calories and bulk. But he was eating —nearly one hundred percent of what he was offered every day; this made up roughly seventy percent of his overall diet. We were excited; we thought we were on our way to losing the g-tube —in the home stretch.

Then, shortly after Nik began attending school in June 2006, it all came to a screeching halt. We watched as the school OT, then the teacher, then a couple of paraprofessionals all tried different ways to get him to eat. The OT began her campaign while Nik was still eating some —though the quantity was dwindling with each passing day; she was determined to teach him “the right way” to feed himself. “Give us some time to get to know Nik,” she said. “Let us try it our way for a while and see how he does.” To me, that was the beginning of the end of Nik’s eating as we then knew it.

By September of that year, Nik was refusing absolutely every attempt to feed him. He was content to sit and clamp his lips together and push away the spoon or throw it if you gave it to him. He would laugh hysterically as if to say “The joke is on you!” We went through great angst over this new development. We saw a behavioral psychologist, outside speech and occupational therapists for evaluations —we even went to Children’s Hospital of Philadelphia (CHOP) to see specialists in the pediatric feeding and swallowing program. No one was able to figure out why Nik wouldn’t eat or what to do about it.

I had my theories but couldn’t prove them —that Nik had been forced into something at school and he rebelled. That the total school experience was too much for him and he couldn’t pull himself together enough to eat on top of all the other demands being made of him. I knew then that Nik has significant sensory issues but no one was willing to listen. Even the “brilliant specialists” at CHOP ignored our concerns over sensory issues and discounted the PDD-NOS diagnosis Nik had been given nearly a year before they saw him. Their advice was simply to ignore the negative behavior and it would go away. We knew instinctively that was not the answer.

Niksdad and I were frustrated and downhearted about what the future might look like with a feeding tube as a permanent fixture in our lives. For a very long time, I held on to hope and kept trying new things on my own with Nik every once in a while; nothing seemed to help with any measure of consistency. After a while, we stopped trying —we even stopped seeing the behavioral psychologist; after all, she was supposed to help us with the feeding issues and we had reached an impasse. We surrendered to the presence of the hated feeding pump.

It is a natural and normal part of being a mother to nurture and nourish your child. Yet, for the second time in Nik’s young life, I felt that I had failed him. When Nik was born, so tiny and fragile, I was unable to breast feed him; he was on a ventilator and I couldn’t produce enough milk. After six weeks or so of valiantly trying to express what milk I had and only getting a few ounces a day, I had to concede that I would not get to experience that critical bonding with my child.

Now, nearly three years later, I felt that I had again not measured up as a mother; it was a bitter pill to swallow.

September 2007; we took Nik out of school. We were tired and frustrated and very concerned that our son was retreating further and further away into his own world during the school week and taking days to recover. Every weekend —and every week he was out ill from school —the Nik we knew would start to emerge again only to disappear shortly after returning to school. After withdrawing Nik from school, we began to have regular individual OT, PT, and Speech therapy sessions. Bit by bit, Nik began to return to his usual happy, energetic self —in spite of his ongoing health issues. By the time we started with dedicated feeding therapy twice each week, my sense of hope had returned in full.

Nik’s therapist, Miss M, is the same SLP that followed him through the early intervention program with Easter Seals; she has known Nik since before his second birthday and loves him like her own child. He adores her and trusts her implicitly; they have a very strong bond and affection for one another. On top of everything else, Miss M gets Nikolas completely. She doesn’t exactly understand the autism piece, but she sees how smart Nik is and how determined he is to communicate and participate in his own ways. She follows his lead and she seeks my input and insights all the time.

Nik is still not eating by mouth but he has come light years beyond where he was just three short months ago. Nik is now interested in nearly all food except baby food; if he sees a jar of baby food, he will push it away and refuse to even try it. He wants REAL food —the food all the grown ups are eating.

While Nik has not yet figured out the mechanics of chewing —though he is accepting the chewy tubes now where he used to bite them once and then throw them —he has the most advanced licking technique I’ve ever seen. Nik can even manage holding the spoon all by himself to dip into food I offer; he taps the spoon on the edge of the plate to clear the excess, as Miss M does, then licks the underside and the bowl of the spoon. He will not accept the spoon into his mouth or allow it to touch his lips at this point. Yet he will lick food off my finger, and will allow us to rub foodonto his lips —just no spoons! But we’re working on that.

Meanwhile, Nik is into all sorts of tastes and consistencies from salsa and wasabi mustard —I kid you not —to garlic roast leg of lamb and black bean chili. If it’s on our plates Nik wants to try it. And we are willing to let him try anything he wants. He’s a big fan of his Nanny’s homemade peppermint ice cream and caramel custard!

Nik has never been big on finger foods. He used to get very upset when his hands got dirty; no surprise there to anyone whose kid has sensory issues. As Nik has gotten more exposure to a variety of things both at home and through OT, his tolerance for messy, sticky hands has improved greatly. Where once Nik would pick up a cheerio or a goldfish cracker and throw it, he now brings them to his mouth to sample. Often he will throw the first half dozen or so before he settles on one to savor —licking, kissing, and sucking on the poor thing until it’s a mushy mess.

Nik has taken a bite or two of solid crunchy food before but it was kind of snuck in by using a thin pretzel stick in the chewy tube. The first time scared him so badly he wouldn’t even touch the chewy tube for a few days. Miss M said that’s normal; the sound is usually very startling. She said it sometimes takes a while after that for a child to try again.

She was right; just this week, Nik took his first voluntary bite —completely unprompted.

He had been savoring one particular goldfish cracker, holding it by the head, when he gently put his teeth on the tail fins. He didn’t apply any pressure; he just felt the fish between his teeth for a moment. He took it out of his mouth and looked at it with a mixture of pride and curiosity. Going back for a second attempt, Nik applied more pressure this time and broke off a fin in his mouth. Both Miss M and I held our breath as we waited for Nik to begin to gag. The gag never came. Nik didn’t swallow the piece (which was about the size of a grain of rice) but he didn’t gag; he merely worked his tongue around until the bit of cracker was forward enough for him to remove it with his fingers. Miss M and I cheered loudly.

We haven’t yet seen a repeat performance but I know it is coming —Nik is far too interested in food not to persevere. I believe and trust in my gut that the day is not far away when Nik will figure out this business of chewing —of eating. And when he does, I expect he will take on the world —one bite at a time.

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It was high noon and The Kid was ambling along in the corral. He was fidgety after a tough morning busting toys and, occasionally, his own head. He was feeling hemmed in and the urge to break free was irresistible. He was itching for a showdown and he knew just when and where he was going to make his stand. He bided his time until he heard the familiar rumblings.

The lunch train was due in from the dining room —accommodations for one. But The Kid had other plans which Ma was not privy to. When the corral gate opened, The Kid made a break for it. Ma had no choice but to follow as he dashed from the safety of the corral toward the Town Square.

Ma tried hard to slow him down by the special chair she’d had rigged out just for him. The Kid wouldn’t take the bait. In a spurt of sure-footedness, he darted past Ma, making a break for…

The Booster.

The two tussled near The Chair. Ma tried valiantly to redirect and cajole him to it but The Kid wanted no part of it and laid himself down in the middle of the town square. He was willing to risk looking like a tantrumming toddler to prove his point; he’d outgrown The Chair and it was high time Ma accepted that fact. Ma knew she’d met her match and had to think fast. In the end, she relented and let The Kid have his way.

The Kid rose from the dirt to help Ma with The Booster as she dragged it (still attached to the dining room chair) into The Corral. Not wanting to wait another moment for the blessed union of his posterior with the smooth plastic of The Booster, the Kid impatiently yanked off the tray and climbed up with a self-assuredness Ma had not seen before. Suddenly, she realized what The Kid had been trying to tell her all along; he’d grown —from the tiny stripling she saw in her mind’s eye for so long —into a strapping boy ready to take on the world on his own terms. Sure, he’d need her around for a little while longer but Ma knew her days as the center of The Kid’s universe were numbered.

The Kid proceeded to eat with gusto as if he’d been on a three day Tonka drive without Cheerios. He wasn’t the neatest cowboy she’d ever had at her table but Ma let him be. The hearty feast of salad dressing and pretzels, peanut butter, and apricots which Ma had prepared especially for him was a hit. He made her proud by coming back for seconds and thirds. He even remembered his manners and took a few sips of water to clear his gullet.

The sound of the beeping pump broke their quiet repast. As The Kid slurped down the last of his dressing, Ma smiled wistfully. The Kid applauded her culinary efforts and they both burst into joyous song.

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In the life of every parent, regardless of age, gender, socio-economic status or political beliefs, there comes the first of many moments which define you beyond the mere biology which has led you to a point non plus. When is it acceptable, nay encouraged, to reward or celebrate bad behavior? This is the cross-road at which I found myself this morning.

Nik and I had a very busy morning today. We woke before dawn —Nik’s bedtime dose of Advil having worn off around 4:30 a.m. —to greet the day with squeals and cries of delight (his, not mine) interspersed with sporadic head banging (mostly Nik). After a spot of breakfast, we packed up our gear and headed off to our morning workouts. Nik’s first —an hour spent in the delightful company of Miss D and Miss T for both OT and PT —followed by my session with my trainer at the Y.

Nik was in fine form this morning. Happy and highly interactive, he greeted Miss D with a big smile then promptly giggled and ran across the room; it’s a delightful new game he’s begun to play, called “Catch me if you can.” The adventures continued through the dual session as Nik independently climbed up the ladder (!!) to the platform above the slide and ball pit. The first time around he waited for Miss D to hold his hands and then he jumped into the ball pit.

The next time through he waited for Miss T to encourage him to do it again —then veered at the last second to slide head first down the sliding board. It is a hoot to watch; Nik points one toe straight out behind him and flexes the other foot to rub the toes along the inside of the slide as a tension-type braking mechanism. All the while he holds onto the outside of the slide with his hands. The result is a perfectly controlled, danger-free sensory delight!

Now, you may be wondering where the bad behavior comes in to play, yes? Apparently, it only happens when Mommy’s not around!

Energized and feeling fine (God bless the wonders of Advil and Tylenol to control the persistent pain and inflammation Nik is still experiencing in his right ear —but it’s not an ear infection!), we took off for the Y. Nik has been doing really well in the child care area as I work out. He pretty much keeps to himself —finding familiar toys with which to entertain himself between bouts of tipping over chairs and laughing hysterically. (Side note, the last time he did this he actually then picked the chairs back up! Progress.) I left Nik in the care of the staff and a very busy group of children. I’m not even certain Nik noticed my departure. Sigh…

Fast forward an hour. Sweaty Mommy comes to get Nik so we can go home. The supervisor begins to tell me how Nik’s been for the past hour; she knows he has autism and other delays and she’s always quick to point out when he’s either having a rough day or doing something really cool. She tells me, “Oh, he’s been having a grand old time exploring the underside of the furniture, tipping the chairs, playing with toys…and stealing snacks from other kids!”

REWIND!!…Did she say stealing snacks? From other kids? She must not know who my child is. My happy loner who doesn’t eat a morsel of food by mouth. Obviously, she’s got him confused with some other cute little boy, right? My face must have said it all. She laughed and said, “Yes, Nik was stealing snacks. He stood and watched the other kids and, when they’d look away, he snuck right in and grabbed some off the table.” Apparently, he even made an attempt —lip service if you will —at eating one. Once he realized it was actual food and not a toy, he spit it out immediately. Apparently, licking food is OK, eating it is another matter entirely.

I nearly fell over from the dizzying rush of shock and pride.

Attention to other children around him?
Stealth?
Food?

I think I’m going on vacation; clearly, my work here is done.

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