Archive for the ‘good stuff’ Category

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:
Peanut Butter
Flat bread cracker
Potato chip
Dill pickle
Fried green beans (a yummy appetizer at TGI Friday’s)
Horseradish dip
Sweet potato fries
Mashed potato
Tortilla chips

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.


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




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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Nikolas is still in the process of learning how to communicate choices. Tough for a nonverbal little guy with lots to say. It’s not a precise science; more of an inexact, interpretive art which we practice every chance we get.
A typical encounter usually goes something like this:

Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases from my hand.)
Me: Oh, you want Signing Time? Okay.
Nik: (Throws Signing Time to the floor and takes Mary Poppins from my hand.)
Me: Oh, okay, you want Mary Poppins instead?
I put Mary Poppins in the player; as the opening credits begin, Nik wails in frustration and flings the case to the floor.
Me: (sighing) Nik, do you want Signing Time instead? Can you use your words to show me, please?
Nik: Pats his chest to say “Yes, please.”

Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases and very deliberately presses it against his lips in a kiss.)
Me: (Startled) Oh! You want Signing Time?
Nik: (Points his right index finger into the palm of his left hand —sign language for “show”— then pats his chest to say “please.” As soon as Rachel appears on-screen, Nik begins to clap wildly.)
You could have knocked me over with Yankee Doodle’s feather!

Happy Independence Day, indeed!

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How much time do I spend in turmoil, wailing and gnashing my teeth, and wondering—

“Will he ever…?”
“Can he even…?”
“Why doesn’t he…?”

If I stop to remind myself that Nik does things in his own time, I am able to let go of the anxiety; Nik has shown me countless times that he is capable but he must find his own pace, his own rhythm. And when he finds that groove —that perfect chemistry that only Nik can know —magic happens.


So many babies who have some sort of special medical needs from birth or shortly after —be it from extreme prematurity, genetic anomaly, or some sort of trauma or insult surrounding gestation or birth— end up being given so many medications; this one to stave off infection, that one to keep the heart from stopping periodically, another one to help with digestion, seizures, blood clotting —and so on. The longer term ramifications of these medications can not ever truly be known though reasonably logical conclusions can be drawn from years of accumulated data. Still, when a parent is faced with life and death choices, it can be more than difficult to weigh and measure the long-term effects of a particular drug against the permanence of losing one’s child.

One is forced to make imperfect choices with little objectivity.


Nik began having absence seizures when he was roughly fifteen months old. At first, we thought they were simple staring spells —Nik’s little way of finding respite from the bombardment of sensory input which accompanied the revolving door of therapists and visiting nurses to our home and frequent trips to one or another doctor in the cadre of specialists for all of his -isms, -itises, and –oses. It wasn’t until he was two that Nik finally got an official diagnosis and began yet another medication.

We went through a few different meds before we found the one which seemed to be the most effective with the least negative side effects. Little did we realize that the cure would also bring about a new problem. Apparently, as we gradually ramped up to the appropriate maintenance dose, Nik began to experience a marked sense of disorientation and dissociation. He felt funny; his balance and coordination —already grossly delayed—were significantly impaired. Because we had no basis for comparison, Niksdad and I did not realize it.

With each incremental increase in the medication Nik felt the fuzziness invading his head. Because he couldn’t tell us with words or signs, he told us in the only way he could; he began waking with screams and howls as he shook and swatted at his head in his attempts to make the sensation go away. We never made the connection between the medications Nik received at dinner with the behavior which occurred hours later. The onset was so gradual that we thought there must be some underlying physical issue; something else had to be causing our son’s horrific discomfort.

A month after Nik’s third birthday, another medication was prescribed for the headaches we all— the doctors included— were certain were from some other source. The second medicine enhanced the effects of the first; a vicious cycle ensued. As we continued to increase the dose of the first medicine, the second one magnified the intensity of its effects on Nik. Nik’s once rapid progress with gross and fine motor skills seemed to stall; his previously voracious appetite completely disappeared. The smiling, laughing child I knew wasn’t replaced with something or someone else but his attention span began to dwindle greatly. Nik’s autistic characteristics became more pronounced; they were there all along but they became the first thing we saw more and more.

Can I prove any of this beyond a shadow of a doubt? Unfortunately, no.


Though he loves to brush his teeth at home —sitting on my lap as we sing a song about brushing — Nik has always hated our trips to the dentist. I don’t blame him; he has to be restrained by strangers who don’t want to take the time necessary to allow him to explore and find his comfort level. Unfortunately, we don’t have a choice about dentists right now so we try to make the best of it; I still have to argue though to be allowed to hold Nik on my lap instead of sacrificing him to their care.

Having discussed the issue with the neurologist and the pediatrician, we recently decided to try a low dose of diazepam (valium) to help Nik relax a bit; if he’s not anxious about it he won’t fight, right? Wrong, wrong, wrong. WRONG.

You know how some doctors tell parents not to give their kids Benadryl or cold medicine before flying because it can have the opposite of its intended effect? That’s called a paradox response. Yeah, that’s what happened to Nik when he got the drug in his system. To say it wasn’t pretty would be a gross understatement. Picture your sweet little child strung out on PCP (Angel Dust); you’ll get the picture.

I tell you this not to garner sympathy but to illustrate a point. At the peak of his medically induced rampage, all of Nik’s previous behaviors relating to his episodic pain returned in full blossom —and then some. It was one of the worst things I’ve ever witnessed; doubly so because I knew that I had caused it. I knew that it was simply Nik’s mind and body reacting to the horrible, disorienting sensations caused by the drug; the knowledge brought no comfort.

Sobbing as I drove the 54 miles home with my feral child, I had a flash of insight.


When we tried to increase Nik’s second seizure medication a few months ago, in preparation for weaning off the first one —the one we worried was causing headaches— Nik’s episodes of horrifying pain and related behaviors drastically increased; his temperament became more volatile and his meltdowns more frequent and more intense. As soon as we realized this and we reverted to the status quo Nik began to improve. After numerous discussions with the neurologist, we decided we should try to wean Nik off of the second medication instead; it has more long-term negative effects on cognition and liver function.

The change was not instantaneous but it was rapid. As we gradually decreased Nik’s daily dose of the medication, we began to see marked shifts in Nik’s attention span, his interest in social interaction, and his desire and ability to initiate play. With each decrease in dose it seems we have witnessed a blossoming of Nik’s personality and intellect; his keen problem solving skills have reached new heights. Nik’s motor skills and communication have been catapulted to a level we had not expected to see for quite a while longer. But the best and most important change we have seen?

The complete cessation of Nik’s episodic, debilitating pain. (Knock wood!)

Can I prove this theory beyond a shadow of a doubt? No, again. But the explosion of cognition, motor skills, and rich social interaction that I see in Nik on a daily basis tells me all I need to know.

Sometimes magic happens all on its own. Sometimes it needs a helping hand.

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