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“Education is only a ladder to gather fruit from the tree of knowledge, not the fruit itself” ~ Anonymous
For months, I’ve agonized over finding the right materials, setting up the right environment, planning the right curriculum to home school Nik —to help him “get ready for school.” (…as if that were really an option right now?) It has been so overwhelming that I have dragged my heels and gotten stuck in analysis-paralysis to the point that I have had anxiety attacks (well, moments anyway) about whether we made the right decision in pulling Nik from school all those many months ago. I mean, sometimes I’m just not sure I have what it takes to home school Nik and meet his needs.

This morning, as I sat in the loft checking email, reading blogs and doing a bit of research, I started to really listen to Nik as he played down in the family room. His laughter and songs bubbled up over the balcony; I could see his smiling face with my ears. His each and every little sound is so richly nuanced that I cannot begin to imagine how much this child of mine has to tell the world. I listen to him admonish the pillows on the sofa or his scooter for not cooperating with his grand plans —whatever they may be. I listen to his enthusiastic singing of his favorite parts of the ABC song from Signing Time; it’s always a fair indicator of his mood since he looooves that song.

Feeling incredibly guilty that I haven’t yet struck upon the perfect combination of curriculum or methodology, but bolstered by yesterday’s foray into the local über-discount store where I found some preschool oriented materials cheap, I decided to simply go play with my son.

As Nik climbed all over me and we laughed and bounced, as we tickled and giggled and he asked for “more, more, more” with his flying hands and laughing eyes, it occurred to me that we were in the middle of a learning experience. When we play together, when I prompt him to use his language and communication skills, when he looks me in the eyes laughing and smiling, he is learning how to interact with others, how to express feelings, how to engage another person’s interest, how to ask for what he wants.

When I tell him “No more, Mommy’s all done,” he is learning about boundaries and limits and how to respect them; sometimes it works and sometimes it doesn’t, but he’s learning.

When I introduce a new toy —a small red foam ball and brightly colored bowling pins —he is learning the skills of observation, exploration, and discovery. Of course he does not do what I expect him to do —in spite of my showing him a few times. Instead, he laughs and throws the ball and chases it around the room; he tries to mouth the pins or stack them or link them like beads.

Watching him trying to sit on the six inch round foam ball time and again —as he does with his yellow playground ball which is three times the size of the foam ball, I laugh and shake my head thinking he’s just being silly. Then it strikes me that he is learning through experience about big versus little, soft versus hard. As he tries to bounce the red ball and it doesn’t go very far, he is learning about how different physical properties act. He rolls or kicks the ball on the floor and he is learning fine and gross motor coordination, visual tracking, and how to aim at another object.

It finally occurs to me that so much learning takes place in our household every minute of every day if I but step back to see it. If I allow myself to let go of the expectations, imprinted on my consciousness by so many years of traditional school room learning, and the goals I think are important, I can watch and learn from Nik where he needs to go next. I can follow his lead and use the skills he already possesses to build a strong foundation for him to continue his own journey of exploration, self discovery and learning. And I can incorporate his journey into mine.

When the student is ready, the master appears. ~Buddhist Proverb

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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.

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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.

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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.

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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.

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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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Yeah, I’m gonna take that mountain.
Ain’t nothing gonna slow me down.
And there ain’t no way around it.
Gonna leave it level with the ground.
Ain’t just gonna cross it, climb it, fight it:
I’m gonna take that mountain.

I was born a stubborn soul;
This is just a stumblin’ block;
I’m gonna take that mountain.
—Reba McEntire

I had hoped to post this on the 2nd. But, wow, life keeps coming at me faster than I can duck and dodge lately, it seems. This post has been “in progress” for a couple of days now. Had a few things keeping us on our toes recently, as you may recall!

What, you may ask, is the significance of the 2nd? It was Nik’s 45-monthiversary. Yeah, I know, you don’t usually count the months after they reach a certain age. But since Nik was born, on the second of every month I stop to celebrate the miracle that is my son. (For those of you trying to count right now, Nik was born on December 2nd.)

Last night, after Niksdad and I finished filling out a sensory profile for school (yay, they are finally taking us seriously about the sensory issues!), I sat down and typed out a quick list of some of Nik’s accomplishments over the past couple of weeks. I also did some serious reflecting on where we’ve come together as a family and what Nik has been through as a human being. I got so overwhelmed that I couldn’t write anything

Try as I might, I still cannot bring myself to write in any coherent fashion about the events leading up to Nik’s delivery by emergency C-section or of the 209 day s we spent in the NICU. Sure, I can share the specific statistics of Nik’s weight, length, Apgars (which were 9 and 7), his diagnoses, and his surgeries. I can share funny anecdotes about my son and interactions with other people. What I cannot yet write about —not even for myself — is what I went through. The emotions are too raw. Too real. Too close, still.

How can you capture the essence of one’s personal experience in the aftermath of being told not to plan or celebrate your child’s birth yet beacsue he may not even make it through the night? The implications of receiving such advice are staggering still. There are some things which one cannot write about until many, many years after the fact; I guess this must be one such for now.

In any event, I can —and do joyfully —share the incredible growth of my miracle child. Unlike the last party I threw, this one is full of joy and laughter —and overflowing with love and pride. I hope you’ll join in the festivities!

At one month old, Nik’s feet were a mere 1 ¾ inches long —smaller than the bowl of a common table spoon (not to be confused with a Tablespoon for measuring). His limbs were so small and fragile. Nik’s entire arm was the size of my index finger; my husband’s wedding band fit all the way to Nik’s elbow. He had gone through the first of his numerous surgeries at the tender young age of 19 days. Nik hated to have a wet diaper; one of the first things he learned to do was curl his foot to confuse the oxygen sensor attached to it. When he needed a diaper change, Nik would curl his toes and the nurses would come running to see what the alarms were all about. Even then, Nik was exhibiting some pretty amazing smarts!

Fast forward to today. Nik has been through numerous surgeries and spent way more time in the hospital than any person ever should. To date, he has spent 18.9 percent of his life in a hospital —most of it in one continuous stretch. That doesn’t include outpatient visits or ER trips. Do the math for your own life; if you had spent that much time in the hospital, what would your outlook on life be like? I am continually in awe of my child’s inherent sunny disposition and his utter confidence that he can do absolutely anything. And he can; the boy is unstoppable!

If you’ve been reading my blog for a while, you know that Nik has made some amazing strides recently —just surf my recent archives for plenty of examples! Here are the latest in what I hope will be a long, continuous line of “amazing and death-defying feats” from my little monkey:

Nik walks. Perhaps not with elegance or grace but certainly with verve and enthusiasm to spare. He climbs like a monkey! The sofa, the crib, the window sill…

We play so much more than ever before. The joy and laughter are no longer one-sided; when I can engage him, Nik participates fully and joyfully.

Feeding is becoming enjoyable for both of us again. Nik’s still not eating but he is making great progress with chewing things he wouldn’t chew before —wash cloths, chewy tubes, Nuk brushes —I think because I am making a game out of it. He is trying so many new tastes and textures, still only licking, but without fighting. If I can encourage his enjoyment of many things, I have confidence that he will actually eat them one day.
Nik is now making so much more eye contact more consistently. He laughs appropriately (sometimes not) and is beginning to initiate contact and communication in his own way. Lately, it seems there has been a communication explosion. Nik takes my hands to guide them down to his tray when he wants to get out of his chair. To his lap belt when he wants out of the stroller. To the gate when he wants to go through.

Nik is beginning to communicate more with his voice. While the words aren’t there, he makes sounds that are the tonal equivalent of “No” or “Mo-om!” —you know, in that admonishing tone. Same thing for “up” and “out”, both sound similar but he uses them in the correct context quite often He will approach Niksdad and make a “raspberry” when he wants to play with him (the “fart” song I mentioned here). He will hum the tune of “Wheels on the Bus” when he scoots over to be brushed, “Row, Row, Row your boat” when it’s time to brush teeth. He gives kisses now with a smacking of his lips to the air before he tips his forehead to my lips.

Nik is wearing his glasses more; it’s still a battle sometimes but when he is engaged in an activity he forgets he has them on and will wear them for up to 40 minutes at a time. And speaking of being engaged…Nik will stay with an activity for anywhere from 20-40 minutes now (with prompting and interaction w/someone). It used to be less than one minute!
My once fragile and sickly little child has become strong, strong, strong. He goes on and on like the Energizer Bunny on steroids! The other day, he tipped over his Kimba seating system. The thing weighs roughly 50 pounds! Slow is not in his vocabulary; he’s got things to do and “lost time” to make up.

And did I mention how smart he is? Seriously. Nik isn’t terribly interested in playing with things “appropriately” but if you give him leeway to explore and examine something? He will figure out how it works in the blink of an eye. Sometimes he doesn’t seem to realize that he has all the information to put his skills to work and then…BAM! Just like climbing out of the crib. And he knows the deadbolt on the front door is the thing that keeps him from getting out. —for now anyway! I am already trying to think two steps ahead to solutions for the day —coming very soon— when he realizes he can open that door to a great big world.

I hope the world is ready for Nik.

Ready or not, here he comes!

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We’ve been through some things together
With trunks of memories still to come
We found things to do in stormy weather
Long may you run.
~Neal Young

Wow, who knew there were so many of us on this same journey?! Thanks everyone for not only your supportive comments on my existential crisis, but especially the reminders that “this too shall pass” (eventually). I guess I’ve gotten so used to worrying about something that it was inevitable I would turn my radar inward to myself and my marriage. Not a bad thing to do every once in a while, I guess.

Things are looking brighter these past couple of days. Niksdad seems more relaxed —now that he’s embraced the “no work for two weeks” concept. He’s been taking Nik to the park in the mornings after breakfast; giving me a chance to get back into my workout routine which has been interrupted by first Nik’s then my illness. It’s felt really good to get out of the house to do something that makes me feel more vibrant afterward. Sweaty, but vibrant.

We’ve made plans to take care of some projects around the house —big ones, like replacing the yucky carpet in the family room with some sort of wood laminate. The family room is where Nik spends a great deal of time and it takes a real beating. The carpet is ugly and stained and I don’t even want to think about what’s possibly growing underneath! We won’t be able to do the actual work until Nik goes back to school on the 22nd. But, the process of planning and making flooring selections —which of course leads to discussions of other projects —has felt good. It feels reminiscent of the early days in our marriage when we would tackle projects together in our first house —the one in CA, where we lived when Nik was born. We were partners and made a great team.

In fact, we still make a great team; everybody remarks on that and tells us how lucky we are. They are right. We’ve had to shift our focus quite a bit in these past few years but we’ve always worked well together —planning, discussing, researching, strategizing, dreaming together, and inspiring one another. Maybe we took our eyes off the road for a little bit but I think we’re on the right track.

It’s a bit like all the times I’ve been on a car trip by myself (in the olden days before Niksdad came along). I’d be off on an adventure, driving down the highway —not always toward a specific destination. I’d look down and the gas gauge would read near empty and the next exit wouldn’t be for miles and miles. I’d drive along, darting anxious glances at the fuel gauge every few seconds, wondering when I would run out of gas on some lonely stretch of road. Know what? It never happened; I always made it to a gas station in the nick of time.

I need to remember that more often when I get antsy about my life —especially my marriage. The frustration, though, of not being able to have consistent time alone together gets tough. Unfortunately, we aren’t exactly in a position to shell out bucks for specialty care givers —which are VERY hard to find around here. In fact, there’s such a demand that no one with the right qualifications wants to work the small number of hours we need. The respite system in our area is the pits for us right now. Medicaid doesn’t recognize the need for couples to go out once in a while as legitimate. If I worked or were in school, then they would consider our eligibility. The only drop-off respite we’ve been able to find doesn’t’ work with our schedule and our needs. So, we limp along with the help of my folks for now. During the school year I think (I hope) it will be a bit easier; some of the Para’s also do childcare/respite once in a while and I know lots of them!

Meanwhile, though, we’ve been making plans to do some things together as a family; things like a return trip to the beach, a trip to the zoo, a local peach festival this weekend, the pool at my parent’s country club in the afternoons (weather permitting), and a trip to a new “Can Do” playground which opened up about an hour north of here, near the hospital where Nik sees all his specialists. We might even try XBos again!

It feels like a time of renewal somehow. Maybe not quite what I had envisioned —you know, candle light and romance —but perhaps better, more important as we, Niksdad and I, learn to make the most of the precious time we do have together. Time that must include our son right now.

Long before Niksdad and I got married, I wrote a vision for myself of what I wanted our marriage to be:

Niksdad and I have a loving marriage and raise healthy children in a warm,
loving, creative, and stable home. Our relationship touches the lives of
many as we open our hearts and home to many children. Our love helps heal
others.

Deep, huh? It may not look quite the way I had envisioned it all those years ago, but perhaps we haven’t lost our way after all. Maybe I just need to check the map every once in a while to realize that the wrong turns or missed exits will still get us to our destination —wherever that may be. And if I let myself, I just might enjoy the ride.

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Well, my parents were not able to babysit last night so we didn’t have our date night. Harrumph! We did manage to rent a movie and get some “down” time that wasn’t about studying, cleaning, doctor’s appointments or taking care of Nik. We got a commitment from my folks for this coming Friday night, though, so I think we can muddle through another week without forgetting each other’s name!
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Today has been a terribly stormy day with thunder and lightning and driving rain. Though, why on earth it’s called driving rain is utterly beyond me; you can’t see a darned thing to drive when it rains that hard! Our well laid plans —to take Nik to the park in the morning then the pool in the afternoon —fizzled out big time. We took Nik to XBos instead.

Overall, he did really well. He cruised and climbed and slid with both Mommy and Daddy a few times. He seemed to be really enjoying himself until Daddy took him up into the structure one last time to try a different slide. We still don’t know what it was —the noise, the lights, being tired, or maybe fear — that made Nik completely freak out midway through the trek. I was waiting on the ground level while Niksdad took Nik up through the structure. They were having a perfectly good time until somewhere near the top.

I could see Nik fighting against going up the platforms as they got closer to the “big” slide (which Nik loved when he went down with Daddy a little while before). Daddy would help him up and then Nik would climb right back down. This went on a few times and then Nik just went ballistic. He fell to the floor screaming, crying, kicking, hitting his head and biting his hand. To say it was awful would be an understatement; I know you all fully understand what I am describing.

Poor Niksdad made the mistake of trying to restrain Nik (he was in a relatively safe area and was not in danger of falling) and got a head-butt in the nose as Nik thrashed and reared into him. I felt helpless and frustrated. I could see what Niksdad was trying wasn’t working and I didn’t want to tell him so in such a public way. I simply told him to keep Nik safe and I was on my way up. I don’t think I’ve ever climbed and clambered so fast in my life.

When I got to Nik he was still frantically wild —very much out of control. I wrapped my arms around him and pulled him into my lap —receiving my own head-butt in the neck for my efforts. My objective wasn’t to restrain him but to stay with him (thinking very much of Kristina’s post about being Zen with Charlie) and to let him know he was OK. I just told him over and over that he was ok and that no one was going to make him do anything he didn’t want to do.

As I spoke very calmly to him, I began doing some joint compressions on his hands, arms and shoulders and gently pressing his hands together so he could (maybe?) get some calming input. I started to rock forward and back as I held him and hooked my arms under his knees, hugging them close to his chest. I felt his body begin to ease and the crying became more of a whimper. I scooped him up in my arms and asked Niksdad to go down first so I could hand Nik down to him as we went from level to level. At one point, I simply carried him until we got all the way down. By the time we got to the main floor, Nik was nearly recovered.

We took him into the toddler play area —with all the little Tumble Forms type stuff —Nik was back to normal in minutes. We decided it was time to go and headed back out in the rain. By the time we got on the road, Nik was singing and smiling as if nothing had happened.

I felt so awful for Niksdad. One, because Nik hit him so hard that he nearly broke his nose. Two, he didn’t know how to help when Nik really needed him. I don’t mean that in a judgmental way at all; rather, that we are still fumbling our way around and trying to figure out what works. Niksdad is still learning that restraint makes it worse. I think I get it more readily because I am the one that is usually with Nik at all of the “awful” appointments where he needs to be held down for something (like the g-tube stuff or EEG’s). Since I am not strong enough to hold Nik as he gets bigger, I have had to find alternatives.

The only reason I thought of trying the joint compression is because of Miss D, Nik’s new OT. I’ve watched what she’s done with him the two times we’ve seen her; it isn’t a magic cure at all, but it definitely helps Nik maintain focus and calm. I’ve been trying it at home over the weekend but haven’t been able to tell if it helps. I think I can safely say, after this morning, that it does.

Nik ended up having lunch and taking a nice nap while Niksdad got to study for his final exam tomorrow and I got out of the house for a short break. All is well and Nik is now sound asleep for the night. Let’s hope…

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Yesterday, as you can probably tell, was a difficult day for me. I am sure the fact that Nik had such a difficult day, too, didn’t help one bit. His blankety-blank ear is acting up again…worse lately than it has been in a while. No signs of infection (yet), but I think it’s on the way; he woke up screaming this morning and hitting his ear. Sigh…

Meanwhile, we’ve been starting to make some connections that are leading us to wonder if Nik may have some sort of vestibular disorder. It’s still early stages of mulling things over but we will definitely ask the docs to consider checking it out. He’s got significant vestibular insecurities (more than he used to), his balance has been kind of funny of late, and his eyes…well, they’ve got a lengthy history of their own. Throw in the whole weird ear saga that continues to worsen with no sign of infection. I don’t know that we would have put these particular pieces together but the new OT indicated some things in her initial evaluation which do seem to be cause for concern; it certainly bears checking out.

Yesterday was one of those days for Nik. Manic tears and laughter all morning long. Nothing made him happy or comfortable until he had Advil at lunchtime.

After a short non-nap (happy quiet time in his crib), my happy-go-lucky boy was back. In rare form, too! It never ceases to amaze me how Nik makes such rapid progress when he is well and healthy and how quickly he seems to lose skills when he is under the weather. In the morning, my angel couldn’t pull hiimself together to be able to cry out for “mamamamama”; even a trip to the park just didn’t cut it.

Yet by the afternoon he was literally climbing the walls…and the furniture…and the windows.

I took him for a walk to my parents house (roughly 2/10 of a mile round trip) without his orthotics; I wanted to wear him out so he’d sleep well! LOL. He walked the entire way there without having to stop and sit once! Just held my finger and marched his wobbly little body all the way there. He knew where we were going and was very excited; he adores his Nanny and Granddaddy! Good thing it’s mutual; Nik fairly attacked his Granddaddy by climbing onto his lap and demanding “kisses” by touching his forehead to Dad’s…over and over and over. My dad was in heaven.

Nik showed off his newly developing walking skills by taking a few steps here and there to Nanny’s outstretched hands, demanding that she play their special singing, clapping game. No one does it quite like Nanny.

Niksdad’s work schedule was changed for this weekend…some unexpected time off. Between studying for his final exam on Monday and getting some yard work done, I think we are going to try to have a date night tonight! Woo hoo!

Here’s to a brighter day…for everyone!

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So much to write about and so little time lately…

Nikshouse is healthy again. HURRAY! Thanks everyone for your good wishes and thoughts. Nik is completely over his summer cold and I’m on the tail end of mine —having sounded like a cross between Greta Garbo and Kermit the Frog for a few days there. Believe me, it wasn’t pretty! Nik’s stoma (g-tube site) is healing nicely and doesn’t seem to bother him in the least now. If only we could figure out the ear thing. If you’ll pardon the pun, it waxes and wanes; sometimes it seems to hit out of the blue and others we can sort of predict when it’s going to be a bumpy stretch. We’re somewhere in between right now as Nik slept through the night last night for the first time in a while. Alas, Niksmom did not.

Blame that Potter kid! I finally laid my hands on a copy of the new HP book and simply couldn’t put it down until the wee hours. I feel like someone might feel after being zapped with a cruciatus curse. I have no one to blame but myself. Sigh…it was worth it! LOVED the book. I won’t spoil it for anyone by discussing it here.

Let’s see, where do I begin? Wow, all of a sudden the lyrics to the theme from Love Story started running through my head. Think about it; they’re very apt when applied to a parent-child relationship. But I digress.

Nik had his evaluations with the new PT, OT, and SLP on Monday and Tuesday. We went for his first sessions this morning and have scheduled something at least three days a week for the next few weeks. I am so impressed with the therapists already. They zeroed right in on some of the key things we’ve been concerned about within the first few minutes of the evals. The greatest part is that the OT, Miss D (not the same Miss D from school), wants to spend a great deal of time working on just sensory stuff with Nik. Hallelujah! We’ve been asking for someone to do that all school year. She’s even contacted the pediatrician about increasing the number of OT sessions per week so she can work with Nik before each of the OT and Speech sessions.

The physical set up at the facility (I’ll call it the “gym”) is wonderful. Something for nearly every level of ability to accommodate all sorts of abilities while providing challenges, too. Today, Nik actually climbed up a ladder (with some help from Miss T, the PT) to a sliding board. Not steps…A LADDER. Who knew he could do that? Certainly not I. There are separate rooms for quieter, more focused activity which is where Miss D went through a pretty rigorous brushing protocol and did lots of joint compression before trying some vestibular activities with Nik.

We’ve made an interesting discovery. Rather, I should say we’ve confirmed something we suspected. Nik has some pretty significant insecurity about not having his feet or his trunk somehow firmly grounded. Miss D put Nik in the vestibular cradle/net swing (which is only 6 inches off the ground) and he completely freaked out. Screamed himself purple, thrashed and bucked until he got himself out of the swing. This cannot possibly be the same child who used to adore being cradled in a blanket and swung through the air by his Daddy, can it?

Nik had the exact same response when he was placed on one of the large therapy balls. I know it is something that the PT and OT will help him with —developing a stronger sense of where he is in space, but it was excruciating to watch him in such a panic. Mind you, neither Miss D nor Miss T persisted in any activity once it became clear that Nik was truly panicky. But the wildness which overcame him was instantaneous and heartbreaking.

On a happier note, Miss D and Miss T both feel that the sensory work will help Nik a lot. They both said they saw a significant change in Nik’s posture and muscle tone, as well as his ability to stay focused on an activity for longer than a minute, after a good 20 minutes of sensory activities. I did see somewhat of a difference. I guess I was just wishing that it would so immediate that Nik would remain calm and focused long enough to eat lunch when we got home this morning. No such luck.

Our eval with the SLP went well, too. Miss C, actually met Nik last summer when he started at school. She worked with him once or twice before she left for one of the charter schools in our district. She works at the school and the “gym”. She’s friendly and very informative. She is going to be working with Nik on some oral motor activities as well as looking at communications methods for him. We all feel that PECS is not really an option for Nik right now as he tends to put everything in his mouth (including the cards). Plus, Nik’s secondary “obsession” after doors? VELCRO. Miss C has her work cut out, for sure. We told her all the things we’ve tried for oral motor facilitation and she was floored. Hopefully, though, with the help of Miss D and her bag of sensory tricks, we might make some headway. Stay tuned!

Nik is making tremendous growth gains lately. My little guy who was once not even ON the growth charts —adjusted for prematurity or not— has made some great catch up growth. According to the nutritionist, Nik is now hovering somewhere around the 90-95th percentile for body mass! It’s all muscle, I swear! I watch Nik’s body lengthening and his legs getting more muscular; he’s losing even the toddler look he’s had about him. My baby is turning in to a small person, a beautiful boy. I still watch him sleep at night and see glimpses of the baby in his posture —but even those are becoming fewer and fewer.

Nik is now taking a few steps on his own throughout the day. A few weeks ago he would take a step or two then his eyes would go wide —as if he wasn’t quite sure how he did that —and he would plop to the floor on his bottom. Not so anymore. Now, he actively cruises along a wall and then lets go to take a step or two, sometimes three or four, and then launches himself toward a target —a wall, a door, a leg. Sometimes he will start to sit then stoops instead and places his hands on the floor. He cannot yet stand up without holding on to something but I see him diligently figuring out the mechanics of the thing. My days of even the slightest hint of peace are numbered!

Nik is also communicating so much more. No words but so many more consistent —and affectionate and funny —gestures and sounds. Now when putting on shoes and socks, instead of simply sitting between my legs, Nik must climb onto my lap and lean as close to me as he can without actually getting into my clothing! When brushing teeth or singing our bedtime songs, he does the same; he even admonishes me with a little squawk if I am not singing the right words or if I am singing too loudly. When I comply with his wishes, he sighs and settles back against me. Or he’ll turn his little face up toward mine and smile at me with a twinkle in his eye. Yep, gets me right THERE every single time. I kiss his forehead and give him a squeeze.

We don’t really need the words, but I long for the day I might hear his little voice say “I love you, Mommy. I’ll meet you in Dreamland.” I know that there are no guarantees in this life —for anyone —and I need to accept that he may not ever be able to articulate those words in the way I would hope. That is not to say I am giving up on the idea of Nik talking —very far from it. I will make sure he has every possible chance to learn to speak; I just won’t make it the be all and end all. That Nik has a means of communicating is far more important to me than the method used.

I have lots more on my mind but I think I’ll save it for another post (or two?). As my dear friend, Mary Poppins says, “Enough is as good as a feast.”

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I’ve been thinking a lot today about Susan’s post on The Family Room today. She really captured the essence of where we are in our lives right now —sort of. We are very far along the acceptance curve but are still somewhat in “siege” mode, too. It’s a strange and uncomfortable place to be. I so often find myself teetering on the brink of full-on acceptance and being able to simply adopt new routines and adapt when and where we need to. I’ve been able to work out regularly and have managed to lose 40 pounds —nearly half of the weight I’ve put on over the years since Nik’s birth. Stress is a horrible, horrible thing if you don’t create healthy outlets for it —but that’s a post for another day or perhaps even another blog altogether.

Then, there are days like today when my adrenaline flows and I am in my battle regalia.

Today Nik woke up very congested AND runny, coughing, feverish. In short, a sick little boy. Well, at least we think he’s sick. It might possibly be a strong reaction to the DTaP booster he had to get on Thursday. It is part of the ongoing evaluation of his immunodeficiency. Yes, Nik the human pin-cushion has to get jabbed with needles way more than anybody should have to. And we still don’t know the extent of his immune function. The immunologist on call today said, “Well, it is most likely just a reaction to the shot…but it could be an opportunistic infection trying to take hold what with his compromised immune system.” WTF…thanks, I needed that like a hole in the head today.

Going back to Susan’s post, I found myself nodding my head “yes, yes” as I re-read the bit about “a simple cold can throw us all into chaos” and wondering when, if ever, I will be able to stop getting anxious over every last little sniffle or cough Nik has. I hate that such a thing has the power to jerk me right back to the panic of all the months in the NICU. The times we were sure Nik was off the ventilator for good, or had turned some corner then…BAM!

On days like today I feel like I haven’t come nearly as far as I think. I hate that I let it distract me from other things I need to be paying attention to. I become obsessed with finding the answer, the “fix”, the “cure” for whatever physical ailment is standing in our way.

Arrogance? No, desperation.

I really need to be focusing on something else right now —getting ready for a non-IEP IEP meeting on Tuesday morning. That stirs the siege mentality/feelings, too; after a pretty mediocre school year for Nik, it feels like we have to get this one right. This one is a biggie; this is laying some significant ground work. We are meeting with the IEP team plus the district autism coordinator and the psychologist to discuss their evaluation of Nik. We’ve put in calls to both of them to ask for a private conversation before-hand but have gotten NO RESPONSE. I would rather have some vague idea of their general thoughts so as to not be blind-sided in the middle of an IEP meeting. I hate when that happens because I get caught in the emotion and get stuck there. It is not useful or helpful for Nik in any way and I have learned —the hard way—not to operate from that place if I can help it.

To that end, when the school case manager called to schedule the IEP —at which neither PT nor Speech will be represented (WTF, I didn’t agree to that!), I told her that she should absolutely not plan on walking away with anything vaguely resembling a signed IEP. I want this meeting to be a discussion about Nik’s needs and classification and placement (possible school change may be on the horizon. We have very mixed feelings about that!) and that we would need to reconvene for his official IEP later.

Just in case, though, Niksdad and I are preparing a list of the things we want incorporated into Nik’s IEP, including the rationale supporting the educational necessity of each item (e.g., “supports independent living,” “necessary for safety,” or “supports LRE”…those kinds of things). For each one the school denies or doesn’t address, we will follow up in writing and ask for explanations. I’ve been reading Mom Without A Manual lately and have been taking some notes based on her recent experiences with her school district.

I keep telling myself that if we can get through Nik’s IEP for next year and are able to get him the supports he needs (which includes a 1:1 paraprofessional full time), I can let go of the fight or siege mentality and begin to settle in and simply BE Niksmom and Niksdad’s wife. Pursuing my own longer-term interests will have to wait a little longer —and I’m OK with that. Right now, I have two guys in school who need my unwavering support. Nik needs me to fight for his rights until he can do so on his own. Niksdad needs me to believe in him and support him in his very challenging career change from engineering to nursing. He is working toward the ultimate goal of becoming a pediatric nurse anesthetist; it’s a long road but he is brilliant and dedicated. He is building a new future for us so I guess you could say he too must feel under siege sometimes.

Lest I get stuck in the bleakness of the kaka going on today/this weekend, I have had glimpses and reminders of all the progress Nik has made and continues to make every single day. The continuing efforts to communicate with those around him, the easy laughter —often at appropriate moments, the physical shifts toward more standing and attempts at walking, the music, the kisses to the “other boy” each time he passes a mirror, the sippy cup with the straw, etc. Those are the things which pull me back from the brink of despair when I am besieged with Nik’s latest illness and the worry that it will turn into something bigger, the IEP planning, or the discovery that Nik has not had ANY speech therapy at school since the June 1st. Yes, I have to take a deep breath and allow myself to focus on the here and now.

Unlike some couples, we haven’t yet figured out how to make time for too many dates or conversation that doesn’t revolve around Nik, school, or work. But we’re getting there in baby steps. Regular workouts, sitting down to dinner together, making time at least one day each week for a family outing of some sort. Like Susan said, “It’s small, but it’s progress, and that makes it feel huge.”

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Ok, I’ve been tagged by Joeymom of Life with Joey to tell you eight things about myself. Can’t imagine anything more boring to others but…one never knows!

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

So…whaddaya wanna know about l’il ol me??

1. I’ve lived in eight different states but have returned to my hometown. I’ve lived in DE, NJ, PA, NY, MA, OH, LA, and CA…only ONE of those was exclusively for college. The rest I actually lived and worked. My favorites? CA, NY, MA.

2. I am a classically trained singer. I lived in NYC for a while and tried my hand (er, um, voice) at Broadway and got as far as some call-backs for touring shows. I’ve sung in non-professional opera companies, community theaters, cabarets, and done recitals at the NY Public Library. I learned all my music by ear…couldn’t read music well-enough to save my life…until AFTER I left NYC! Now, my primary audience is a 3 1/2 year old critic who HATES when I sing anything but kids’ songs or stuff from Mary Poppins! (Hey kid, people used to pay money to hear your mama sing you know…)

3. I am hopelessly, shamelessly addicted to Regency-era romance novels (think Stephanie Laurens, Georgette Hyer, etc.). Hey, my life is stressful enough every day — when I want to get away from it all I want to get as far away as possible!

4. I went to a Quaker school in high school. I was the fifth generation in my family to do so. I am not a practicing Quaker.

5. When I was 15 I went to Italy as part of a national youth chorus. We sang for the Pope.

6. I have a degree in broadcast journalism and even won a few awards in college for my reporting. I’ve never worked a day in my life as a PAID journalist! LOL

7. Since I was a high school student, I always wanted to work with disabled kids. It took me along time to get there —I even took some early childhood ed courses toward a second degree while living in CA (didn’t finish b/c I got pregnant w/Nik). Be careful what you wish for, it has a funny way of coming true —just not in the way you envisioned!

8. In spite of my outspokenness on topics about which I am passionate, and my willingness to make a fool of myself in front of total strangers (see #2 & #5), I hate large gatherings of people. I can address my state senate but cannot make small-talk at a cocktail party.

In fact, I hate talking about myself at all! This was a hard meme for me to do…which is why I did it. Every once in a while it’s good to stretch outside my comfort zone.

Some people I’d like to know more about:

1. TJ’s Mom over at One March Day. She always has good stuff at her place. Sometimes it is funny and entertaining, sometimes poignant and very moving. Always a good read.

2. Mom to JBG from Hoop Dee Doo and PDD. I only recently discovered her blog and am in awe of the fact that she has three small kids, two with autism, and she not only manages to write but she keeps it very real!

3. Gretchen, Henry’s mom, writes on her eponymous blog (I’ve been longing to use that word!). I feel like she could be the mom down the street that I’d like to get to know better and hang out with.

4. Jennifer Graf Groneberg, writes about life with her beautiful family on Pinwheels with such exquisite coloring that I find myself feeling things much more keenly after reading her posts. I usually read her blog last in the day because it is so wonderful. Truly. Do yourself a favor and go there now.

5. I first found Vicki Forman through a link on Mom-NOS.’ site I was hooked and can’t wait to see what she’s written each month in her Special Needs Mama column on Literary Mama. I am jealous that another of my favorites, Kristen (From Here to There and Back), got to meet her in person today.

6. That would be Kristen, mentioned above. We’ve been emailing a bit and I wish we loved close enough to get together for coffee. She is a very talented writer with a gift for thoughtful expression and warmth.

7. Christine, at Day Sixty-Seven. I found her blog recently and have been following closely the exploits of her sons, her recent embarking upon a new teaching (ad)venture with her son, Oliver, and waiting to read about her new career choice. She writes with raw honesty and lots of humor. And she doesn’t have a brain tumor!

8. My final choice is selfish —I miss reading her posts lately — the ubiquitous Mom-NOS! I mean, I know she loves Palmer Cartney, mows a mean lawn, and breaks for music…but I want more! (Please??) 🙂

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