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Archive for the ‘determination’ Category

But we won’t let nothin’ hold us back
We’re gonna get ourselves together, come on
We’re gon’ polish up our act, yeah
And if you’ve ever been held down before
I know that you refuse to be held down any more

Ain’t No Stoppin’ Us Now ~ McFadden & Whitehead

True to form, it takes more than a raging fever and another ear infection to keep Nik down for more than a moment or two. After a night of Tylenol and good dose of Zithromax, he woke refreshed and perky on Wednesday. Not quite full-throttle Nik —but close.

So, Nik has gone from the boy who fell asleep while actually playing with a toy on Tuesday

to —


Climbing to new heights on Tuesday afternoon and discovering the joys of dimmer switches.

Reaching the light switches from standing on the floor; I’ve reset my VCR/DVD player half a dozen times in the past 48 hours.

Learning the proper amount of force it takes to body slam the gate in the back hall open without making noise; we discovered this when we heard the inside garage door open yesterday afternoon. (Niksdad has since replaced the gate with something sturdier!)

Figuring out how to turn a cap on a bottle (great fine motor practice!). AND…

Operating a regular doorknob. (I’m hoping praying it was a fluke or beginners’ luck…)

My sanity was already hanging by the merest thread. It is gone; gone, I tell you. And I couldn’t be prouder…or more afraid!

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What counts is not necessarily the size of the dog in the fight – it’s the size of the fight in the dog. ~ Dwight D. Eisenhower

As we’re weaning Nik off of naps and one of his meds, he definitely gets more tired by the end of the day. I suspect it’s a combination of increased energy and alertness which leads to greater physical activity—which I didn’t think was even possible for this kid —and greater sensory input to try to process; the result is that Nik is exhausted at the end of the day.

Today is no different.

His slender frame encased in his “footie” pajamas —the sight makes me smile as it’s the last vestige of any sign of baby about this boy —Nik chirps and sings as he toddles on wobbly legs toward the stairs. He is so tired he nearly runs into the kitchen cabinet en route.

He spies one of the cats lounging on the back of an armchair but is too tired to give chase; he acknowledges the cat with a sing-songy “mah-mah-mah,” his way of saying “meow,” as he pinches and pulls his cheeks to make the sign for cat. He continues in a zigzag line to the foot of the stairs; his feet are barely able to propel him forward. “I think you’d better carry him, honey,” I say to Niksdad.

Unassisted, Nik begins his laborious ascent. On most days, he holds the railing and walks up with great confidence and speed; tonight, he crawls on his hands and knees like a thirsty man approaching a desert oasis. He pauses about midway; sitting back on his foot, he nearly tumbles but Niksdad is there to steady him. “Nikolas, do you want Daddy to carry you?” my husband asks.

Nik pauses and turns his body toward us; I expect him to reach for his father. Instead, he turns brusquely away. His determination makes me smile. Nik refuses to ask for help except in the direst of circumstances; this, clearly, does not qualify. He continues to crawl; his progress is much slower than before. He pauses to rest his forehead on each step before he climbs —as if he is gathering strength for his arduous task. You would think he is Sisyphus, pushing the boulder uphill, he is working so hard and is so determined!

Reaching the top step at last, Nik staggers into his bedroom and heads right to his crib. I am certain he will ask for help in getting into bed; he is so tired I cannot fathom that he has the stamina to do it in the usual fashion**.

Apparently, I am mistaken yet again. Determination thy name is Nikolas.

** Video of “the usual fashion” as of approximately three weeks ago:

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If music be the food of love, play on; give me excess of
it, that, surfeiting, the appetite may sicken and so die.

~William Shakespeare~

While he may lack the prodigiousness of the Bard, Nikolas seems to be experiencing an explosion of communication lately. Not just in the generic cooing and babbling which he often does, or even the “singing” of certain songs/tunes —though he has been singing more in context to indicate an activity or desire, come to think of it.

No, Nik really seems to be catching on to this whole communication gig. We’re having some mixed successes with the actual AAC devices; Nik is making good progress with sequencing but the whole bit about conscious choice-making with the push of a button? Sporadic at best. I’ve been working with Nik’s speech therapist, Miss M, on finding ways to develop this skill. We are both thinking waaay outside the box here. Nik really is not cued in to visual symbols yet but is keen on music. We’re working on some ideas to incorporate a snippet of music —like a line of a song from a video he likes— only spoken, not sung, and coupled with a visual representation so he has to hit the button if he wants to actually hear the music.

So, when you add in the powerful motivator of music, with Nik’s new found crush on Rachel, and his intense desire to eat… well, you get something like this:

(For clarity: the sign for apple is made by rubbing your knuckle in a small motion in the apple of your cheek. Children who are just learning to sign —or those with fine motor impairments —often use approximations rather than precisely mimicking the sign.)

Now, the video is obviously set up but I did so in response to Nik actively requesting a piece of apple from me at dinner time. TWICE and without prompting!

In addition to the spontaneous signing —in the correct context, too, as he signed “eat” and then “apple” in succession —Nik has also begun mimicking the intonation of certain words or phrases that he hears me say or is learning from the Signing Time videos. Tonight, after I gave him the apple wedge and he started slurping away like there was no tomorrow, I said “Nik, can you say Thank you!” as I made the sign, too. He thumped his chest with his palm (apparently his way of saying “thank you” as well as “yes”) and said “uhhhh-uh” in perfect intonation.

The words may not have been there, but I swear I heard “I love you, Mama” in that simple guttural utterance. Nik beamed at me; I laughed —then wiped away a tear.

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Ah, intuition takes me there
Intuition takes me everywhere

~John Lennon

In my desire to share last week’s experience with the diagnostician, I realize now that I left out some pertinent information which may put my attitude into context for some of my readers who are outraged on my/our behalf. (And, truly, I am so touched by that. You have no idea how much.)

I am not going to let that doctor’s attitude, arrogance, laziness —call it what you will —deter me from finding answers for my child.

I don’t know what steel I have found within me but I refuse to let go of my knowledge that whatever is going on with Nik has a physiological cause. It may have some significant neurological manifestations but, based on our evidence-based knowledge that Nik’s brain has sustained no further injury since birth and there is no sign of any progressive degeneration, the cause is absolutely physiological. I know that from some deep-seated, intuitive understanding which I cannot explain but I trust implicitly.

Sometimes, when I am starting to doubt myself —to think that maybe I might be wrong —things like this article pop up in unexpected places and fan the embers of hope which I refuse to let die.

Lee J. Nelson struggled for years with a similar issue as Nik is experiencing—not the same but close enough —and yet he would not accept the diagnoses of the myriad doctors he saw. Sixty over the course of six years. One hundred different medications. He never gave up in his knowing that there was a root cause which could be addressed. His story is worth reading; it inspires me.

Nelson sums up exactly what I think many parents and patients with anything less than a straightforward, text book diagnosis may have come to believe:

Nelson said the experience has radically altered his view of doctors. “I’m very thankful I had the [financial] resources and the gray matter to do what I did,” he said. “But I think that a lot of physicians have lost their intellectual curiosity and don’t want to work with a patient.” [Emphasis mine.]

I will not give up. You —and especially Nik —can count on that.

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Snips and snails, and puppy-dogs’ tails…

More like gnashes and wails and long paper trails –that’s what this little boy’s IEP will be made of! While Nik is still battling the upper respiratory bug and the ear infection which have kept him down (but never out!) for nearly ten days now, I’ve spent the last few days doing some research in preparation for another IEP meeting.

I’m hopeful that the next one will go better, or at least leave us a little less battle weary. We’re going to take a very different tack on this next go ‘round and will do everything in writing and record the session. We’ve already got some specific points we need to follow up on which weren’t addressed in the last IEP. And, going forward, we’re going to be cordial but, frankly, a pain in the butt about requesting an independent educational evaluation (IEE). We have already provided our own privately done evaluation which school has virtually ignored. You may recall that Bobo indicated that it didn’t matter anyway. Well, we’ll see about that one.

We will play their game only better. We’re going to be looking over the goals and objectives with the proverbial fine-toothed comb. We truly feel the goals they have set for Nik are not appropriate and seriously underestimate Nik’s abilities. Of course, we’ll also be looking for an increase in services and now, with the change of Nik’s placement from school to “home instruction,” we’ll be pushing for a teacher to come work with him at least one day each week.

The challenge now is for me to sit down and write up cogent arguments supported by facts and concrete data. It’s a challenge getting my emotions and mama-bear protectiveness out of the way. But I have to in order to give Nik the best shot at a meaningful IEP. I don’t want to go through another year like last year. I mean, I know that Nik will grow and progress and flourish on his own (well, perhaps Niksdad and I might have a tad to do with it, too). But the things he could do, the catching up he could achieve if he is given the right combination of supports, services, and challenges… he could actually benefit from his FAPE instead of just filling space and marking time.

In the time since he’s been home, in spite of his being ill and running a continual low-grade fever, Nik has been so much more animated and focused. He’s consistently (well, almost consistently) cooperating in most requests such as “lie down so I can change your diaper,” or “turn the toy off and give it to Mommy, please.” Yes, that’s right. Along with the newly emerging skill of standing independently, Nik has already made significant progress on TWO of his IEP goals. Frankly, I don’t think it’s much more than the fact that he’s not so bloody overwhelmed by is environment. But, hey, what do I know? I’m “just his mom” and can’t be objective. (Sarcasm dripping from her voice…)

So anyway, I may be a little quiet online for a while as I gather resources and compile data. I’ll be lurking and commenting from time to time but I may not write much this week. Don’t worry though, I’ll be back!

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A quick update on the school situation —

I spoke with the case manager on Tuesday afternoon. While she seemed to be sympathetic to our situation, her official stance was “Let’s go through the IEP and see what school comes up with before we look at what’s next.” Toeing the party line, for sure. Needless to say, I got off the phone feeling very frustrated and a bit down-hearted. As I related the story to my husband Tuesday night, he reminded me —being so much more pragmatic and less emotional than I am on any given day —that to the larger entities involved (those being school and Medicaid), this is as much about a business negotiation as it is about the best interests of a small child who needs much in the way of supports and services.

In other words, my son costs money and they want to see who gets stuck with the largest portion of the bill. Ultimately, they will come around to doing something close to the right thing; I have to believe that or else I would give up the fight before I even begin. In the meantime, they will haggle and dicker like two old-world merchants transacting a complex ritual in the marketplace. Sigh…it is so hard not to take it personally and even harder still to wait it out.

The good news, though, is that our advocate is worth a gazillion times her weight in gold. Seriously, I cannot say enough about the way she is helping us —and it’s not just in terms of the specifics of this IEP. She is a very passionate advocate for children; having spent the past 18 years doing the same for her child with disabilities, she has been tested in the fiercest battles and has emerged with an iron will which doesn’t take “no” for an answer without first trying every avenue to “yes.”

It was at her urging that I delved into the murky depths of Nik’s past. It has also been with her assistance that I made a significant connection today with someone who has the ear of one of the top people with Medicaid’s Managed Care programs for our state. If someone can help push our case through, she may just be the one to do it. Of course, she warned me that she must first talk with our case manager and see where they stand on things so she doesn’t step on too many toes indiscriminately. Ah, yes, the wondrous joys of state bureaucracy; no agency is immune to the politics and the red tape. Ugh.

The other gift our advocate has given me is the constant reminder that, since we currently do have outside services for Nik —already authorized by Medicaid —we actually do have the power. I am not 100% convinced yet, but she keeps insisting that we will see in the end. I hope she’s truly right; I am anxious about getting my hopes up but they are definitely a bit higher than they were a few days ago!

Meanwhile, there is still no SLP at school to replace the one that left. When I spoke with the principal this morning, he told me that he’d made an offer to someone but she took another offer; I’m guessing it was in private practice or a non-school setting and infinitely more lucrative from both a financial and professional perspective. I feel terrible for the speech therapists at school; right now there are only two to handle 96 kids spread out over four locations and one of them is, I believe, only part-time. I can’t fault the previous therapist for leaving; she felt like she couldn’t make a difference for a single child given what she had to work with in terms of time constraints, limited resources, uninvolved families and administration…it’s a sad commentary.

What makes it even more frustrating is the fact that many of the new therapists at school are just that —new therapists. They don’t have the background and the experience to draw upon to handle many of the more complex needs of some of the children like Nik. So those kids are left with nothing substantial in the way of help. I haven’t seen or heard from too many other parents at school who either know that they can fight for more/better for their child or who have shown an interest in fighting for it. Sadly, many just accept whatever their child gets and figures “It’s better than nothing.” Obviously, I disagree. I almost think the little bit they get can be worse because parents make some assumptions about the consistency of what gets carried out in the classroom and don’t follow it up with effort at home.

I don’t mean to imply that I think every child’s parents thinks, feels, or acts this cavalierly; but they do at my son’s school. The demographics are such that many of the children come from single-parent homes, are being raised by grandparents, live in foster care or— worse —are homeless. There are some middle class families at school but they aren’t highly visible in their involvement. I’d like to try to change that; not only would I like to see those families get more involved, but I’d like to see the district provide training to all families about advocacy, IEP’s, planning for our children’s financial futures, etc.

I can see myself as an active, more deeply involved parent at some point. But that time is not now. Now, I want to focus on Nik and getting him the right supports to continue to flourish as he has begun to do…at home.

************************************************************************************

Tonight, though, I am a quivering mass of nerves and anxiousness. We have decided that the line we are going to take is simple — no school for Nik until he is 5. Sounds so simple, right? I know with every fiber of my being that this is the right decision. Yet, I am terrified of “them” taking away his services and leaving him, us, with nothing.

If you believe in the power of collective prayer or visions, please say one for us tonight and tomorrow? Pray, wish, envision, that Nik gets to spend the next year happily learning the things that most toddlers learn at home with their families. Envision that Nik stays healthy and grows stronger with each day. Envision that he continues to learn the fundamental life skills he will need when the day comes that we must send him out into the world. Envision that we can put that particular day off at least for another year.

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In the midst of all the bleak feelings of frustration and near-despair, there have been some really sweet moments with Nik lately which have made me smile. Some of them have been visuals.

Others have been complete sensory experiences—like this morning. Nik awoke at 4:30 am — all sing-songy and chirpy. I lay in bed listening for a bit and smiled. Dragging myself out of bed, I went to scoop him up to go downstairs. When I picked him up, Nik wrapped his arms around my neck, looked me in the eye and then tossed his head back and laughed as if we had just shared the greatest joke. This was followed by a light touch of his forehead to my lips —our customary good morning kiss.

The merriment continued as he played in the family room while I made coffee and got the pump ready for his breakfast. I stood for a moment and watched him play. He was the embodiment of the most exuberant, unbridled joy. There was no one thing I could see that was making him happy —he just was. At one point, he was laughing so hard, he leaned against the TV, panting like a winded long-distance runner, then he doubled over and just crumbled to the floor in a heap of giggles. My face hurt from smiling so broadly.

If only we adults could start each day that way; wouldn’t the world be so much brighter?

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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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