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Archive for the ‘food’ Category

Yesterday was an intense day. Too many appointments, the prospect of lots of lab work for Nik, and the question mark about whether or not he did, in fact, have a rotavirus. You know, just another ordinary day in our lives.

We had a great appointment with a new doctor, an allergist, to help us make some headway into figuring out the causes of Nik’s ongoing pains and recent skin rashes. We left feeling really good —despite a long list of allergens to be tested. The doctor was personable and Nik seemed to take to him. Always a bonus.

The day took a nosedive from there.

The appointment with the pediatrician, to discuss Nik’s recent apparent illness and whether to culture for a rotavirus, ended up not happening. The nurse that had scheduled the appointment had not confirmed it in the computer. When we arrived, we were told that the second doctor in the office had a family emergency; that left Nik’s doctor, Doctor Mary, holding the bag for all the appointments for the day. Since Nik seemed to be so much better than he had been even twenty four hours prior, we opted not to wait in the hopes she could see us.

We headed over to the lab to get the blood drawn for Nik’s battery of tests. After a lengthy wait, we were greeted by a seemingly disorganized lab tech. As soon as she realized the tests were for Nik, she balked. Whether it was because it was so close to the end of her day and she didn’t’ feel like dealing with a screaming child or whether it was simply because she felt like it, she told me she couldn’t do the tests because it would require more blood than she could take from a child at one time. I’ve since discovered that wasn’t true but, whatever.

So, a lengthy day spent traveling up and down the middle portion of our state, bouncing from appointment to appointment —it made us tired and cranky. By the time we got home, we decided to go out to dinner. As luck would have it, both Nik and I had reactions to some food. Neither was too bad, but it was enough to make us both uncomfortable.

I woke this morning feeling pretty tired and crabby; a state I must confess lingered until about lunchtime. I’ve been sitting at my computer, willing myself to find words to write —and coming up dry. I’ve also been listening to my son singing and playing happily in the loft. For some reason, it put me in mind of this post from Kristen. I realized I could choose to be angry and resentful about all the energy expended yesterday —seemingly for naught, or I could choose to find something good to hold onto.  I chose the latter —in the form of a cookie.

Yes, a cookie. And french fries, too.

Since we’ve been limiting Nik’s exposure to potential allergy-inducing foods, the allergist warned us that it might actually skew the testing. He actually suggested that we feed Nik some of the foods we’ve come to suspect —especially wheat —in order to trigger an immune response. So, with that in mind —and thinking we were getting blood drawn in the afternoon —I bought Nik a giant chocolate chip cookie. Okay, let’s be honest; it was as much for me as it was for him.  But we shared that cookie in the Starbuck’s parking lot like it was manna from heaven.

It was Nik’s first-ever chocolate chip cookie. Yeah, okay; big deal, right? Right. The cookie was fairly chewy and soft so I was able to mash up bits and pieces and slip them into Nik’s mouth. Normally, he would either gag or reach in to remove anything larger than a single crumb, but this cookie was sweet and gooey and melted quickly. And he adored it!  By the time we were through, Nik had consumed nearly a quarter of the cookie; much of that he even placed in his own mouth —another first —instead of licking it off of my fingers!

While we’ve been trying to mitigate all these weird reactions to foods, we’ve had to severely limit Nik’s oral intake; it’s just so challenging to find things he will eat that are the right consistency and texture that are not potential allergens. We’ve been more than a little concerned that he might regress in his desire or ability to eat by mouth.  So, after the allergist told us to “stimulate his system,” we decided to really go for it.

When we went out to dinner last night, we let Nik have some of a buttered roll, a lick of my patty melt —he even tolerated a very small crumble of beef on a fork without gagging—and, of course, french fries. Nik’s favorite thing to do with fries is to dip them in either Daddy’s salad dressing (usually honey mustard) or in ketchup.  His favorite thing to do last night? Show off his ever lengthening reach and lightning quick food-snatching skills. At one point, I wasn’t fast enough to stop him; Nik helped himself to a fistful of fries off the plate.  The boy’s hands are definitely getting bigger, too!

Nik did have a bit of a reaction to all those foods and was a cranky, uncomfortable boy by the time we got home —clawing at his ear, pulling his hair; we gave him a quarter dose of Atarax at bed time and another half dose five hours later. He slept through the night and has had relatively few side effects today. The allergist gave us a prescription for Allegra to see if that will help with the symptoms without causing the neurological side effects. We will start that after the blood draw on Monday.

Meanwhile, we’ll be sharing cookies —with our glasses half full.

cookie_mouse

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In spite of an inauspicious beginning to the day, my 45th birthday ended up being full of so many small and unexpected delights that I was giddy by the time I collapsed into bed around midnight. Might have something to do with that mojito at dinner, but I don’t think so.

First there was my husband’s beautiful card; it was so deeply moving that I wept. He is not a man of many words or effusive emotions; his actions speak volumes more than his words ever can or will. Yet each time he gives me a card, it says all those deeply heart felt things a girl could ever wish for. And I know he means every word of it.

Next, came a fabulous session of feeding therapy. It was fabulous for so many reasons but the true standout event was that Nik fed himself yogurt. Voluntarily. With a spoon. Many times. He even placed the spoon in his mouth in the “correct” horizontal position that most of the rest of us use; it was only once but it’s a start! Miss Michelle and I just sat there grinning at each other like we had just won the lottery. Best birthday present ever.

Until lunchtime.

My mother took us to lunch at a nice little downtown café. Nik was, again, a superstar. He kept asking Nanny “please” for a bit of her soup (no go, it was hot and had crab in it; I didn’t want to find out the hard way that he has the same shellfish allergy I have). He delightedly sucked on a lemon wedge —he is his father’s son, for sure —and even signed “apple” when he wanted more. It took me a minute to realize he was calling it an apple because of the same wedge shape. Pretty clever that kid!

He “ate” flatbread crackers, potato chips, tasted my chicken panini sandwich — I finally gave him a bit of the bread which he licked to death. He even tried my dill pickle. When dessert came —yummy crème brulée cheesecake with caramel sauce, raspberry coulis, and whipped cream garnish— Nik went wild. I offered him some bites from my fork but he wanted no part of it. Instead, he reached across the table (when did his arms get so long??), grabbed the extra fork the waitress had left, and simply dug in!

He was an absolute sticky mess and I loved it. I thought my mother was going to cry. I’m not ashamed to admit that I, um, perhaps, leaked a tad from the corners of my eyes. The photo quality isn’t great (cell phone) but it’s tangible proof!

Nik had an awesome afternoon at OT with Miss Debbie. He’s gotten very fast and accurate with sorting colors and objects and almost ready for slightly more difficult tasks. Nik even used some very intentional communication with Miss Debbie about an item he wanted from one of the cabinets. She was so excited by it that she had him do it again just to make certain she wasn’t imagining it; she wasn’t.

Niksdad, Nik, and I went out for a celebratory dinner. Ostensibly, it was a celebration of my birthday; it was also a celebration of Niksdad acing his test (as in a full 100%) yesterday morning and of Nik’s amazing progress in the eleven days since we stopped his Lamictal cold-turkey.

Nik was a voracious “eating” machine! He wanted some of everything that his daddy had. I wish I had thought to video the moments when Nik, pretzel or tortilla chip in hand, would watch with longing as his daddy would take a bite of a something. From the expression on his face, it was as if Nik were thinking “Hey! I wanted that one!” Priceless.

In all, my non-eating son tasted or ate all small quantities of more food in one day than he has in more than two years.

He enjoyed the following foods:
Yogurt
Peanut Butter
Pretzel
Lemon
Flat bread cracker
Potato chip
Dill pickle
Panini
Cheesecake
Fried green beans (a yummy appetizer at TGI Friday’s)
Horseradish dip
Sweet potato fries
Mashed potato
Gravy
Tortilla chips
Salsa
Lime
Strawberry

By the time we got home from dinner, Nik was pleasantly tired and went right to sleep. His final gift to me? Eleven hours straight through the night!

So, while I might not have had a wild surprise party or been showered with lavish, expensive gifts, I can honestly say that my cup runneth over. It almost makes me look forward to forty six.

Almost.

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Video Wednesday

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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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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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It’s felt like a long week for some reason. Could be the long holiday weekend in which Nik exhibited the balance of a Zen master in his escape from the crib. Or the frequent interrupted nights of sleep which have been randomly sprinkled throughout the week. Or, perhaps, it’s just the emotions I have roiling inside my head and heart lately. I have been deeply affected by both the utter joys of some of my friends’ blog posts, and sunk low by the pain, worry, or despair in still others. I have been feeling things very acutely lately. I guess it takes a toll after a while.

Well, that’s my long-winded explanation for how I got Niksdad to take us out to dinner tonight. Not a date, though we have one coming to us soon I think. Rather, a nice family outing —something we haven’t done in a very long time. In the past, such outings were not very enjoyable for any of us; Niksdad and I spent the entire time marshalling the toys Nik would propel halfway across the aisle —oblivious to the glares of other diners. Or Nik would get fussy and squirmy from the lights, the noise, the time of day…

Since we’ve been on a roll lately, we decided to chance it. We planned our outing with military precision. Pump? Check. Syringe and tube? Check. Meds? Check. Sippy cup? Check. Mesh feeders? Check. Toys? Check. Forward march! And off we went…to Applebee’s for an early dinner. And it was a pleasant experience! OK, except for the part where I smashed the tip of my finger under the seat cushion of my broken chair. No blood; I’m fine (sniff, sniff…rolls eyes dolefully).

Nik was amazing throughout the entire dinner! He was alert and fully engaged in the environment and with us. That is not something I have ever been able to say about previous dining experiences. I did brush Nik and do joint compressions before we left the house; maybe the sensory input helped him regulate himself better? Or, just maybe, Nik has made another developmental spurt.

In any event, Nik sat much like any other 3 or 4 year old in a restaurant. He was very well behaved —only threw one thing and that was a teething biscuit that he decided didn’t have enough flavor to suit him! He “nibbled” (ha! Ok, licked) the teething biscuit alternately dipped in salsa and in the horseradish sauce from our onion rings. (Yeah, it’s a good thing I’m going to the gym tomorrow morning!)

Nik’s favorite thing, the thing which held his attention throughout most of the meal was a pineapple wedge.

Between the pineapple and the balloon the waitress brought for Nik to play with, we never had to pull out a toy. Not once!

Nik slurped and licked and laughed and played at taking turns feeding Mommy and Daddy. He tugged and batted at his balloon —laughing hysterically each time it bopped him in the face. Niksdad and I laughed right along with him.

It was the first time I can remember in a very long time that we simply laughed together and took such unadulterated joy in a moment that included our son’s active participation. Frequently we will watch Nik and laugh at his antics, but this was different.

This was a shared moment —a relationship.

And while I am bragging, I must report that Nik was very clear in his communications tonight. When I offered him something in the mesh feeder (I brought three with us!) that he didn’t care for he simply pushed it away and reached for the one he wanted —or for the pineapple wedge. Poor wedge, suffered nearly the same fate as our friend the peach slice!

And Nik colored! Ok, I don’t mean in a coloring book with pretty pictures kind of way. I mean in the manner of a child who has just begin to learn about holding a crayon; chubby sticky fingers clamped awkwardly around the too-thin waxy stick, Nik jabbed at the page and actually moved his hand back an forth a time or two. (The picture on the right is cropped bit of the kid’s menu. If you open the pic in a new window, you can see the oragne crayon marks!) He even showed his hand preference —finally! Turns out my son is a lefty!

Yeah, we got some odd stares from people around us. Not so much disdainful looks. More like curiosity about the little boy with the tube running under his shirt. The boy who was so obviously having a grand time with his parents. Wondering, perhaps, what is “wrong” with him? Wondering perhaps what is wrong with his mother that she keeps talking to him like he’s done advanced calculus on the back of his napkin? Who knows? Tonight we couldn’t have cared less what the rest of the world thought.

Tonight, we were “just another family” and it felt grand.

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As my little hometown grows up and becomes overrun with new housing developments and shopping centers, it is becoming increasingly rare to find celebrations of the old ways, the agrarian culture, and the simpler times. Sigh. As Rascal Flatts sings, “I miss Mayberry…”

One of the neighboring towns hosted their annual peach festival this weekend to commemorate the town’s once rich agricultural history. You see, Delaware was one of the top peach producing states in the union until the dreaded peach blight of eighteen-something. Seriously. Nonetheless, there are a few large farms around doing a booming business; one of them always hosts a huge customer appreciation event complete with music, hayrides, a small petting zoo, and free peach ice cream cones all day long.

So, Saturday morning found NiksFamily heading out in the sweltering, muggy air to embark upon an adventure —to expand our cultural horizons. It was, I think, the start of a new family tradition. We ventured into the town center —all two blocks of it —to check out the official peach festival (which is separate from the event hosted by the orchard). The town’s single train station —long ago converted to the town hall —doubled as the main stage on Saturday. Heck, it was the only stage!

We wandered the street along the edge of the railroad tracks, perusing the offerings of myriad vendors. The local high school drum corps playing in the background, Niksdad and I held hands as we wandered and sweat. Nik wanted to walk a bit so we took turns holding his hand for support. When the heat became too much to bear, Niksdad hoisted Nik onto his shoulders. Now, I have been to many “street fairs” when I lived in NYC and near San Francisco —the kinds with a gazillion different vendors and umpty-ump musical acts (some big names) and an air of highly organized chaos about them. Saturday’s festival was nothing like it.

There were tables of crafts and clothing, jewelry and hand-sewn handbags, potpourri and wood art. And the baked goods. Oh, the baked goods. None of the slick, mass produced bakery fare here. No sir, each and every pie, cookie, loaf of bread and you-name-it —all home baked by the ladies of the XYZ church auxiliary. Such a fierce competition between them, too! I found myself getting teary as we wandered; I suppose I could claim it was from the heat or the sun in my eyes. The truth is, I felt an odd connection to another time; I felt nostalgic for a life I’ve never known but always dreamed about. I felt like time must have stood still for this one day, just for me. And that was just the beginning…

After melting under the morning sun, we got in the car and headed up the road to the farm for the customer appreciation event. Now, my mother swears she use to take me to this farm as a kid —to pick out pumpkins; I have no recollection of this whatsoever. I am sure I would have remembered such a beautiful farmstead; their event was so much nicer than the festival we had just left. There were huge tents —set up under gigantic shade trees which have to date back well over 150 years —with volunteers serving up refreshing ice cream full of thick chunks of yummy peaches. Mmmmm…There were hayride tours of the orchards, a small petting zoo —kind of a rag-tag collection of family pets and farm animals —and a musician playing wonderful background music that you could sing along to. Perfect.

I don’t think words can do justice to the fun we had. Nik wanted to walk around holding onto one of our hands or he wanted to scoot along on the ground. Knowing how much Nik thinks he wants to eat versus how much he actually does (rather, DOESN’T) eat, I decided to see if Nik would deign to take a lick from my ice cream cone. He’s never really cared for ice cream before; it’s too cold and too wet for his liking.

Apparently, the secret is all in the cone! Not only did Nik enjoy the ice cream, he wanted to have his very own cone and “yelled” at me when I tried to share with him. He actually looked me in the eye, pushed my hand away and said “Ng, ng, ng, ng!” which is how he says “no.” Nik didn’t really want the whole cone, he just wanted the control. But the fact that he ate numerous bites —licks, really —of peach ice cream was pretty monumental. Especially because he sat on the ground next to me the whole time and even tried to feed me a time or two. New stuff. A big deal.

Ice cream finished, we wandered a bit and ran into some people we know including one of the para’s from summer school. She was pleased to see Nik; he actually acknowledged her presence and held her hand for a moment. It was a sweet moment for all of us.

From there, we found the petting zoo. Nik didn’t seem to really recognize that there were animals there; perhaps it is because he hasn’t had much exposure up to this point? There was a two-day old calf, some baby bunnies, a couple of pygmy goats, and a dog. An interesting collection to be sure, but it was just enough to captivate the smaller kids. Once Niksdad helped him pet the calf, Nik seemed to catch on a bit.

By lunchtime, it was clear that Nik was beginning to fade. We gathered up our dirty little ragamuffin —with his dusty shorts and his dirt-smeared face he looked like the most typical three and a half year old boy —and began to head to the car. When I heard the song that was paying, I had to stop and dance with Nik. How could I possibly resist the lure of “American Pie?” I scooped Nik up and whirled him around as I sang to him —and he looked me in the eyes, threw his little head back and laughed! The more I sang and whirled, the more he looked right at me, smiling and laughing and clapping his hands. I could have died on the spot and gone with a smile on my face!

Yes, definitely an occasion to be repeated every year!

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…to be a pain in the neck, a thorn in the side, a nudge, a pushy mama.

Nik’s back in summer school now and I’ve been spending each morning this week right there with him to make sure he’s getting the gross motor activity and sensory input he needs before meals. This is not a new concept; I’ve been saying this to the teacher, to the para’s, to the case manager, the PT, the SLP, the OT for months. MONTHS. Hell, even the janitor is tired of hearing it! Hello, people, did you think I was talkin’ ‘cause I like the sound of my own voice?? (Well, ok, sometimes I DO —but that’s beside the point entirely!)

Well, amen! Hallelujah! Someone FINALLY AGREES!

Let me back up a step here and put my excitement (and cynicism) in context for you. Nik has never been a real “eater.” He spent so many months with a feeding tube down his throat or up his nose, followed by the g-tube stuck into his tummy when he was one year old. Nik has gone through cycles of eating and making great progress then not eating at all —for months at a time. We’ve had just about every conceivable kind of evaluation, intervention — you name it. NO ONE has been able to de-bug this one.

A year ago, when he started preschool, Nik ate nearly everything we offered him —all pureed baby foods with little to no texture variation. We’re talking roughly 70% of his total nutrition; we were gearing up for getting rid of the tube. When Nik started school, we told the staff what works to get him to eat —we had done great with it. The attitude at the time was, “Let’s try it our way and see how he does.” Well, here we are a year later and Nik is no longer eating. Nada. Zip. Zilch.

We’ve been working with a fabulous behavioral therapist, Dr. S., who’s finally decided it is time to tell the school to either “get on the bus or get run over ‘cause we’re moving on!” She’s going to prescribe each and every step of the program so we can get Nik back on track. We’ve known for months that the problem has nothing to do with Nik’s desire or hunger. The poor guy clearly communicates his desire to eat but when we sit down to do it —he falls apart. Nik cannot focus long enough to take more than a few bites, tastes really, before he is just overwhelmed. Even the things that used to work no longer work.

Not only have we known this but we’ve shared it with everyone at school until we’re blue in the face.

My theory is that Nik ate well a year ago because he was getting the appropriate sensory and motor input for where he was at the time. Then, he didn’t walk and hadn’t discovered the joys of the mobile prone stander or climbing and cruising —let alone sliding or swinging. He didn’t need as much intensive input. Today, Nik is a kid in constant motion, in spite of not walking independently. Niksdad and I have noticed for along time that Nik does much better when he has lots of gross motor activity and deep sensory input —and especially strong oral stimulation —immediately prior to each meal. He also does better with minimal distractions; school is pretty much the antithesis to this!

Unfortunately, Nik is also a child who requires perhaps much more consistency and structure than the “average” or NT child. Why is it that we, the parents of such children, completely get it —and it’s no big deal to work with, yet the “trained professionals” never seem to catch on until it slaps them in the face?

So, back to summer school we go —

The para we really liked, Ms. M., didn’t get placed in the preschool for the summer (and boy is SHE bummed!) and there is a new (translation: totally green/inexperienced) para working with the preschoolers over the summer. That means that Nik’s teacher, Ms. J. —who is one of the few that really gets Nik, is working directly with him especially for meals. My husband always says, “For those who are ready to learn, Nik is a great teacher.” GOD BLESS MS. J., SHE IS FINALLY READY TO LEARN!

After putting up with this nudgy mother all morning yesterday, listening to my thoughts and suggestions (but having no way to implement them at the time), Ms. J. got on board the Nik-train with us! Woo Hoo! Today, as I sat and watched her working with Nik at breakfast, she acknowledged to me that yes, Nik does need far more input than he is getting. She told me she spent time yesterday with the OT to find some solutions to help Nik and is also going to be looking at how to restructure parts of his day so he focus better. (Mommy does her happy dance here!)

This morning, I ran into Ms. D, the OT. She told me she was going to be recommending a brushing program and some specific sensory exercises and activities for Nik to do daily. She also told me she shares my opinion and frustration about the lack of a structured, formal oral motor program for Nik. Ms. D. also showed me a couple of things that she’s tried with Nik that seem to be working. Yay!!

Meanwhile, we have scheduled an independent feeding evaluation in two weeks. Yeah, another eval. This time, our focus is going to be on specific oral motor activities and exercises to be implemented at school. No more of each person trying “a little bit of this, a little bit of that!” No more assuming “he’ll learn as he goes.” Ain’t happening here folks.

Dr. S’s not-so-secret objective in making Nik’s feeding program so incredibly specific and regimented (not to mention far-reaching if Ms. J is looking at restructuring Nik’s day!) is to show the school how much Nik clearly needs 1:1 support. I think the fact that Ms. J. is the one doing the 1:1 support right now will only bolster the argument further come IEP time. Like I said, God bless Ms. J.!

Today I feel like we finally won a battle —which never should have been fought in the first place. But we still have many more skirmishes to go.

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(Written Tues 5/8)
Gardens have a funny way of surprising you. You fertilize and cultivate and plant and water and wait. Sometimes you see the fruits of your labor almost immediately; others it seem s like nothing is ever going to grow and you resign yourself to the fact that your plantings didn’t take root. And you wonder, “Did I give enough fertilizer? Did I water it enough? Too much? Did I plant it in the wrong place?”

Eventually, autumn comes and all hope of seeing growth is rendered moot by the layer of newly fallen leaves, then frost, then snow as the seasons change and the suns light no longer warms the sweet earth. You forget about the plants and focus on keeping warm inside, maybe some new project to carry you through the winter.
Seasons change yet again and the warmth of spring beckons you outside to the garden where the miracle of rebirth and new growth awaits. Where you once thought your special plant had withered and died, it now shows signs of soft green shoots and abundant life. You smile and bask in the warmth of the sun’s kiss upon your face.

That is how I feel tonight. The garden metaphor has been on my mind since I spent some time in the yard today, weeding, as Nik played happily inside with Daddy. For the first time, I actually enjoyed the opportunity for quiet reflection. Where I used to only see patches of incessant weeds to be pulled and shrubs to prune, today I saw the “bones” of my landscape and the possibilities they hold.

It’s like that with Nik, too. I try never to take for granted how much potential he has and try to focus on all the wonderful things Nik is and does. But sometimes, like my garden, I plant seeds and tend them so carefully and see nothing. It’s easy to let myself accept that “X” (whatever thing it happens to be at the time) will not happen for Nik. Showing affection, responding to the sound of my voice —those are two things that I realize tonight that I had given up on; Nik has never done them. I’ve tried all sorts of coaching and coaxing and even bribing with a favorite toy held near my face in an attempt to get Nik to look me in the eyes. Nothing.

Since Nik has been put on a new enteral formula, which is food-base AND has less dairy protein than his previous formula, Niksdad and I have noticed some changes in Nik. His attention span seems longer and he now seems to pay more attention to his surroundings than he ever has. The other day when I came home from the gym, Nik actually stopped what he was doing and came to greet me at the kitchen gate. He didn’t look me in the eyes but he held my hand. I was in heaven!

Tonight, Nik has been “chatty” —babbling all sorts of spontaneous, happy sounds, as he had dinner, then afterward as he played before bed. He’s taken a few short steps over the past couple of days —usually when I pull my hand away from his as he is already in motion. Tonight, though, Nik consciously let go of my fingers and stepped away from me. He walked three steps and sat. He looked up at me with a glorious grin that said all that needed to be said between us. Yup, THAT was cool!

We have a bedtime routine that includes brushing teeth before holding onto Daddy’s hands to walk up the stairs to bed. I have a silly little song I sing to cue Nik that it’s time to “Brush, brush, brush your teeth” (tune of Row, Row, Row Your Boat). If Nik isn’t ready to go upstairs yet, he will not come to me. I tell him he has five minutes to play then it’s bedtime. Usually, Nik will scoot over to me in his little crab-like crawl (he sticks one leg out to the side and won’t use his knee). He always sits on the floor between my legs and I pick him up and put him on my lap. (It is one of the rare times I can get Nik to sit still long enough to get some “snuggles” in!)

It’s been a long few days with Nik home from school with his upper respiratory infection; we’ve been with each other 24-7. I figured he’d be pretty sick of Mommy. Apparently not.

When it came time for the “brush-brush” song, Nik scooted across the room so fast I thought he wasn’t going to stop. Tonight, as he settled himself in between my legs, Nik put his hand on my thigh and turned to look me right in the eye. Then he lifted himself off the floor and climbed right up onto my lap and leaned against me. Yeah, I couldn’t see to brush his teeth after that.

Soft green shoots and abundant life. Everything feels pretty rosy tonight.

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