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Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  After a hearty lunch and some down time for Nik —and a healthy dollop of analysis and brainstorming by Niksdad and me— we decided to try our luck a second time.  After all, the festival is only one day a year and the orchard offers free peach ice cream cones—made from their own peaches— which is heavenly!  Even Nik adores it.

I am happy to report that the outing was a rousing success!  Nik managed to consume an entire cone by himself —along with a goodly portion of mine!  We even managed to get in some play time at a nearby park which we’ve recently discovered.  Nik was so happy all afternoon; he sang and clapped and raced around the park without a care —exactly as we had hoped it would be.  He even picked up a sweet little guardian angel!

I don’t think it’s an exaggeration to say that our afternoon was the antithesis to our morning. 

So what was different the second time around?  Nothing, really.  And everything.  I know, I know —that doesn’t make sense.  But, really, the things we did were so incredibly simple that I wasn’t even sure it would work.  We met Nik where he was.  To do that, we had to observe his behavior and listen to his cues.

Let me give you a little background which might help this make sense:

Nik is nonverbal but extremely intelligent.  He understands just about everything that is said to him, about him, around him.  He takes everything in.  He also has a very strict interpretation or understanding of certain constants.  One of those constants is that food is eaten while sitting in his booster chair at the table unless it is otherwise specified. e.g., “We’re going to Nanny and Granddaddy’s for dinner.” or “We’re going to a restaurant for lunch.”  (Snacks are a different category; he’s ok with eating them in the car, at the park, play group, etc.)

Nik is also usually very good about adapting as long as he understands the sequence in which he can expect things to occur.  Nik knows ice cream is food.  He doesn’t know that “going to get ice cream” means going somewhere —let alone somewhere new —in the car.  So, to Nik, “ice cream first, then park” would mean “We’re going to sit at the table and eat ice cream and then go to the park.”

Nik is also amazingly observant of his physical surroundings.  He can tell where we’re going based on the turns I take or the scenery along the route.  If I tell him that we’re going somewhere different —and I may have to repeat it many times to reinforce the message as I drive— Nik is, generally, ok with it.  Today’s destination —the orchard for the ice cream and petting zoo —took us right past the turn for the park.

Can you see where this is going?

Right. So here’s our happy-go-lucky boy —already wound tighter than a top from the shoe incident— thinking he’s going to sit and eat ice cream and then go to the park.  By the time we got to the orchard, not only had we not eaten ice cream but we’d driven past the park!  Poor Nik  was experiencing such tremendous cognitive dissonance that he simply could not function.  I’m not using hyperbole for effect, either.  By the time we returned home this morning, though he was happy and clapping when we pulled in the driveway, Nik was completely motionless and silent when we opened the car door.  It was as if he simply checked out for a moment to re-calibrate.

This afternoon, armed with those realizations, and the knowledge that Nik doesn’t know what the new place —the orchard— is, we realized that we had to give him only one part of the sequence at a time.  Otherwise, we risked the likelihood that Nik would fixate on “going to the park” and block out the rest because he couldn’t visualize it.  We also decided to try something that I’ve been meaning to try for a while —a rudimentary picture schedule to help Nik know where we are going in the car and why we are not going the way he expects us to go.  (Side note: Nik doesn’t seem to have this trouble with changing activities at home or at therapy; it’s only when we are driving places that he gets so rigidly attached to his expectations.)

I printed out two pictures to take with us.  We gave Nik the first one —a full size picture of an ice cream cone— before we got in the car and explained to him that we were going to “a farm” to get ice cream.  Oddly enough, though I don’t think we’ve ever taken him to a farm, Nik seemed to understand that concept.   Maybe it was simply because I named something that he understands as an actual place or, at the very least, a place that is not home?  I really don’t know.

As we drove along the exact same route we took this morning, I sang silly songs about eating ice cream and going to the farm for yummy ice cream.  Nik even got into the spirit when I asked him to show me how he eats an ice cream cone by, well, eating the ice cream cone picture!

eating pic of ice cream

Nik never once whined nor got upset the entire drive.  As soon as we arrived, he let Niksdad put him up on his shoulders and we made a beeline for the ice cream.  Nik’s reaction was all the proof we needed that we had done the right thing:

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After Nik downed an entire cone —and attempted to eat a few twigs, too —we asked if he wanted to go to the park.  He wasn’t quite clear about that so I asked if he was ready to go in the car.  That got a clear affirmative so we went and sat in the car.  Once we were in the car, Niksdad gave him the second picture —a picture of a playground similar to that at the park —and asked if he wanted to go there.  The light bulb went on and our little dude was on board.

The rest, as they say, is history.

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Just a quick update to yesterday’s post

Since Addie Ville came to stay last night, Nik slept fairly well; he only woke at 4:30 a.m. but that was because we didn’t give him his extra dose at 11:00 p.m. We couldn’t —he was out cold and sleeping on his tummy and wouldn’t budge even when I gently tried to turn him over.

After some fuss and furor in the wee hours, Nik went back to sleep for another couple of hours and woke in a glorious mood! He’s been playing and singing and clapping for nearly two hours now. In other words, just like a typical day around here. YAY!

So, we’ll be off to see the trains and Santa in a few hours. Did I mention the trains? Nik seemed fascinated by them last year, even with all those mind-numbing drugs in his little body. I can’t wait to see what he does this year.

Me? I’m so excited to see him excited that I’m an emotional, weepy wreck this morning. But in a good way. Might have something to do with these bloggers I’ve been reading so far this morning. See, Christmas is the season of miracles.

It’s a cold, cloudy day but there’s no call for rain until later this evening. I think it’s going to be a good day! (And, yes, Addie Ville will be tagging along, for sure!)

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I think five is going to be our best year yet!

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In our continuing quest to help Nik learn to communicate his wants and needs in a manner which is far less annoying than whining or crying more universally understood, we’re building on the small sign language vocabulary he already possesses. I may have mentioned in a post or three about how rapidly Nik’s skills are developing since we took him off the Lamictal, yes? And I may have also mentioned a time or twenty that his appetite —rather his willingness to taste things —is increasing at an amazingly fast rate which, if unchecked could impoverish a small country, no?

Nik long ago learned the sign for cracker which is made by flexing your left arm at the elbow and tapping the elbow with the closed right fist. It comes in handy at feeding therapy —about the only place he will deign to eat goldfish crackers anymore; his palate has become more sophisticated since he’s no longer taking the seizure meds.

Nik’s latest culinary favorite seems to be small pretzel rods —”dipping sticks,” actually. They are the right size for his hands and he can carry one around nearly everywhere he goes while he plays. Quite convenient, that. Unless you have an aversion to sweeping, vacuuming, and mopping the floor at least once daily? But I digress.

Since there doesn’t seem to be a universal sign in ASL for pretzel, we’ve been using the same sign for cracker and then saying the word pretzel for Nik. It’s simple and it seems to work. But, Nik being Nik, he came up with something all by himself yesterday; it happened so fast that I wouldn’t have believed it if Niksdad hadn’t been there as a witness.

I was in the kitchen starting to get his dinner ready when he walked over to the gate singing and smiling. When Nik knew I was looking at him, he signed cracker, please. “Oh, would you like a pretzel, Nik?” I asked. Without missing a beat, he signed please and quietly uttered ge gah.”

Kid’s got me wrapped around his little finger like, well, a pretzel, I swear!

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Talk about a lesson in trusting yourself. In the five weeks since Nikolas took his last dose of seizure medication, we have witnessed the following:

He’s begun showing a voracious interest in food again after two years of not eating; he wants everything from our plates and wants to feed himself. He’s not actually biting and chewing yet but he is making tremendous progress with pureed and thickened foods. And he’s tolerating all kinds of new textures such as meat (!!), breads and bagels, tortilla chips, slightly chunky mashed potatoes, mashed broccoli, cookies…all kinds of things he never showed any interest in before.

He no longer wants to sit in his Kimba chair to get a full tube feeding by pump unless he is either in the kitchen while I am making dinner —and getting to share it with me while I cook —or sitting at the dinner table with us. Breakfast and lunch are now broken up into two rather large bolus feeds as Nik sits in his little Elmo easy chair. He even follows directions to pick up Elmo and “bring it over here” (usually near the sofa so I can sit and feed him) then makes a big production out of sitting down and patting his tummy to indicate he’s hungry. Yeah, he’s turning into a first rate ham.

He comes to the gate to tell me he is hungry by signing eat; if I ask him does he want apple or cracker (pretzels) he will indicate his preference by signing the right one, followed by please. He now signs please anytime he wants something. Then, I ask him to show me what he wants. In the last five weeks, Nik has learned the signs for book, ball, and watch. Well, technically, he’s learned the sign for time —as in Signing Time —but he likes to chew on my sport watch so I’ve taught him how to ask for it with nice words. I still have to prompt him some on that specific one but he’s really catching on fast.

He can also sign all done, open, shoes, and diaper now. And, very often, he will sign “ball, please” or “book please” completely unprompted when he wants a toy. This week, Nik actually stood in front of the armoire, patting his chest for please and said gah, gah.” You’d better believe he got that book right away!

He’s begun putting on his own shirt, helping to pull up his pants —and zipping them!—and he can pull up his socks, put on his orthotics, and shoes; I help him with most of those things but he does a pretty good job without me, too. He can brush his hair, feed himself with a fork and spoon, and consistently asks for more when he wants it.

My child —the one who is visually impaired, didn’t walk until 15 months ago, and has cerebral palsy —has nearly mastered climbing the stairs —all by himself while holding a toy in one hand — opening regular door knobs, flipping light switches, and can get the lid back on his bottle and screw it shut 7 out of 10 times. He’s figured out how to climb slanted rock walls, small ladders, slide down slides in every possible position, and is learning to not only steer his little bike by its handle bars but is beginning to figure out the concept of pedaling —again, with minimal assistance from us. His motor planning abilities continue to amaze us as does his keen awareness of nearly everything going on around him.

We used to have to encourage him to stand up to walk to the car because he was always so focused on the ground right in front of his feet. Now we have to cajole him to continue walking because he is so busy picking flowers, picking up leaves, chasing squirrels, ringing the doorbell, running to the end of the driveway. It’s pretty cool; annoying sometimes but cool none the less.

Did I mention the daily kisses and giggle-fests with both Mommy and Daddy? The way he takes my hand to walk to the car and signs please to tell me he wants me to come to the park with him and his Daddy? Or the way he rides his bike from the family room to the front door because he heard us say the word park? Or the way he warbles in his beautiful little vibrato to ask me to sing opera for him? And when Miss Rachel is singing on Signing Time, he now grabs my arm and makes me stay to sing along. His current favorite is the “ABC” song (aka “A is for Alex…”). He always sings that when he is happy, happy, happy. And when I sing the last part that goes “X is for x-ray and Y is for yesterday; Z is for zipper and now we are doooone! Hooray!” He collapses in a fit of the giggles and claps wildly for more.

And when he’s sitting alone in his chair and watching Signing Time without me (a rare occurrence I can tell you), I peek around the corner from the kitchen to watch as he flexes his fingers and waves his hands along with Miss Rachel. I don’t know what he’s signing but he’s definitely trying to sign more words.

Tonight, as we were killing time waiting for Daddy to hurry home so we could put Nik to bed, I discovered that Nik recognizes NINE letters of the alphabet —A, B, E, M, N, X, Y, and Z. He can correctly identify them by pointing! We haven’t even begun to work on letter recognition so I know it’s all from the videos and singing. Well, and the fact that my kid is a freaking genius! I was blown away!

So when some doctor tells you “Your child won’t…” or “Don’t get your hopes up,” don’t you dare sell your child out and buy into that crap defeatist attitude. Sometimes all it takes is a belief that it can happen, the determination to create the possibilities —the right environment, the right people— and the ability to love your child more than you fear their labels and limitations.

“There are two lasting bequests we can give our children:
One is roots, the other is wings.”

~ Hodding Carter

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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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For five consecutive nights —hopefully six after tonight —my son has slept peacefully through the night. Ten to twelve hours.

Straight.

Through.

The.
Night.

The last time he did that my son was about two and a half years old.

The changes I have seen in my child in the past four days have been nothing short of miraculous to me —and that even accounts for nearly a full day spent in the emergency room over the weekend. (It turned out to be nothing they could identify and he’s completely fine now.) I’m trying so hard to wrap my brain around the words to convey the magnitude and scope of these changes; the words and changes are swirling so fast, I simply cannot make them make sense yet.

I can tell you this; there is not a single area of development that has not been positively impacted by the discontinuation of Nik’s seizure meds. Motor skills are blossoming, his appetite is returning and his resistance to certain food textures is diminishing. Communication is increasing as he tries to couple simple sounds and gestures in meaningful combinations. His four year old attitude when he doesn’t want to cooperate is crystal clear —yet he complies anyway. Problem solving skills are increasing at an alarming rate; I see new hazards in my home each day that I didn’t think he even noticed or could figure out how to reach.

Nik’s therapists and I have marveled at how hard he pushes himself; how he challenges himself to not only master a skill but to push through his fears or his sensory issues. The things he could not tolerate at all in the past two years he now attempts consistently; each time he pushes just a little farther in spite of his own resistance. What used to cause him excruciating cognitive dissonance now merely seems to challenge him to try harder.

My heart aches with the stretching it has done to accommodate my maternal pride, my hope, my ever increasing sense of ease; I can feel it oozing out all over people around me, too, as I comment on blogs or talk to friends and family. The love, the hope, the profound respect for my child and appreciation of his intellect and drive; it’s all so much larger than I have allowed myself to embrace these past couple of years.

I feel like we’ve landed in Oz and everything has become technicolor.

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