Archive for the ‘frustration’ Category

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.


Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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Thank you to all of you who weighed in on my last post about our dilemma. When I wrote that post, we had not yet hit the proverbial wall; I didn’t know the behaviors would get even worse. The first night of the medication —only two doses given at full strength —left Nik in a lethargic zombie-like state the next day; the second night —doses of only half strength— accomplished the aim of uninterrupted sleep and a subsiding of the allergy symptoms but left Nik in an even worse state of hypersensitivity and extreme agitation.

We opted to forgo the medication and try to mitigate any allergic response as much as possible using some homeopathic remedies to relieve the symptoms. Now, say what you will about homeopathy —we are all entitled to our opinions —but I have personally experienced times that it works both for me and for Nik. I certainly don’t believe homeopathy —or anything else for that matter— will “cure” my son’s autism (or anything else). What I have seen, though, is that it can ameliorate some specific symptoms of physiological responses and make things a bit better —more manageable, if you will. Such has been the case with the homeopathic antihistamine we’ve used. It’s not perfect and it doesn’t solve the problem by any stretch —Nik’s still showing signs of allergy or extreme sensitivity— but it makes Nik more comfortable and less inclined to claw at his head. And that’s all good.

Anyway, we decided Nik in the aftermath of the Atarax was too close to our experience of Nik in the weaning stages with Lamictal. (You may recall that was an ugly time for us.) Nik continues to show us that he does not handle certain types of medications well at all. No amount of titration or even minimal use will work. He has had adverse reactions to four different seizure meds, paradoxical responses to another anti anxiety med plus Benadryl, and now this. At some point, we have to respect the messages he’s giving us. That point is now.

Last night, Friday, was our second night without the Atarax. Nik slept okay —not as long as I’d have liked but soundly none the less. This morning, the light is back in his eyes and the music in his voice. As I write in the loft, I can hear Nik playing happily in the family room below; he’s actively engaging with his electronic toys, singing along in time with the music and “talking” back when they make the letter sounds. “Huh” he says when the alphabet train says “This is the letter H.” Instant recall where two days ago there was confusion and extreme frustration at his inability to retrieve the information in his brain.

I witnessed the same thing yesterday in his OT session; he couldn’t recall simple things that he’s long ago mastered —this one was matching colors in a sorting activity —and he got so frustrated that he just fell apart. Yet, today he’s able to respond to a disembodied voice from his toy asking him “Where is the letter P?” He recognizes that he has to wait a moment before pressing the right button and he’s actively looking at the letters to find the right one. He even says “guh” for “good” when he knows he’s pressed the right button. He is aware in ways he hasn’t been for a few days.

As for me, well, I suppose I’ll just learn to adjust and sleep less. Meanwhile, the payoff of seeing my son back to his normal rascally self is enough to keep me going. Our quest for information and answers continues.

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Tonight it feels like I can’t catch a break even if I used a net.

My wunderkind is down again. A dear friend emailed me yesterday “apparently no one told Nik he has special needs.” Apparently no one told him he was sick, either.

Today was a bumpy day after a bumpy night in a string of bumpy nights. Then the wheels fell off the bus. Nik broke out in a very fine, pinpoint raised red rash on his back, his feet and ankles, his arms, under his arms…

What’s a mother to do when her child is on so freaking many meds and has multiple medical diagnoses? It could be from the antibiotic —unlikely as he’s taken this one many times with no side effects, but you never know. It could be —waaaay scarier —a rash caused by one of his seizure meds. We talked to our awesome neurologist this evening (he even gave us his cell phone number!) and he told us to stop the medication entirely. Not something that is normally recommended with this kind of med but he wanted to err on the side of caution as the alternative could be, um, potentially permanent.

Then again, it could be something viral like roseola. Or, possibly, something else entirely.

Yeah, Niksdad and I really relish the idea of spending a sunny, beautiful Saturday traveling to the hospital to have someone that doesn’t know anything about Nik tell us, “Um, well, we’re not really sure…” Yet, we have to cover all the bases —just in case. Nik’s fooled us in the past and it hasn’t been fun.

There’s a little more to the story but I don’t have the mental energy to try to tell it. Something about the increase in all the icky “mysterious pain” behaviors and the angst of watching my son struggle so. I tried to tell him tonight, as he cried and pulled me to him —clinging to me like a monkey —that his Daddy and I are trying really hard to make it all better. I think he understands that; I hope he does. My heart aches and I am frustrated.

Can’t we just deal with one stinkin’ thing at a time? ARGH!

And have I mentioned that I’d sooo much rather be at BlogHer with Susan, Kristina, Vicki, Jennifer, Kristen, Jordan, Stimey, and a bajillion other potential blogging friends? Or DisneyLand with my pal, Drama Mama, and her awesome girls?


(Thanks in advance for the prayers and warm thoughts.)

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It is said the darkest hour is just before the dawn. Each day brings with it a new dawn and a darkness which, depending on circumstances, can seem bleaker and blacker than one thinks possible.

Yes, as Drama Mama said in her comment on this post, we do seem to do things in a BIG way here at NiksHouse. I’d give an awful, awful lot to be oh-so-very-small right now. Really, truly, I would.

In the wake of this awful stuff, and on the heels of this amazing stuff —well, it just keeps on getting better and better. Sorry, you couldn’t sense the sarcasm oozing from those words? Let me elaborate.

Today, Nik had the worst experience ever with PT and OT. We had back-to-back appointments this morning after another phenomenal session with Miss M. Nik actually made it to the parking lot again before he lost it. Like last time, he went inside —screaming and crying in protest the entire time. That was the good part. I’m sporting a fat lip tonight as a result of letting my guard down. Technically, I didn’t really let my guard down; it’s more that I didn’t think Nik would react as strongly as he did today; he reached a new high. Or is that low? Whatever your perspective, let’s just say that Nik’s flailing head and Mommy’s lip are not a good match.

Miss D worked with Nik and tried to follow his lead and redirect and distract him when and where she could. They even took a walk outside in the sunshine and fresh air while I waited inside. It went great until Nik saw our car and tried to open the door; when he couldn’t open the door and Miss D led him away from the car —you can imagine the scene in the parking lot. He completely fell apart and just was not able to pull himself back together —even after Miss D brought him inside and I held him and sang to him; he quieted for a moment but then ramped right back up.

We’ve hit a crossroads in many areas it seems. First, and I wasn’t certain I wanted to share this yet but it seems appropriate at this junction, our neurologist wants to put Nik on this medication. Niksdad and I have made it clear that we are not yet ready to go down that road until we have exhausted all other possibilities and ruled out any potential underlying physiological causes for Nik’s pain. And it is pain; I can see a very marked difference between his pain episodes which strike out of the blue and the temper he displayed today.

Today. Ah, it was really difficult to not react negatively when talking with Miss D about Nik’s cognition and behavior. She truly thinks that he “knows what he’s doing” and seems to think he has some measure of control over it. I, on the other hand, do think he knows what he is doing but that he cannot control it —yet. It was agonizing to watch as Miss D held Nik by the arms in a chair and spoke sternly to him as I was putting on my shoes; it was nowhere near a true restraint such as this, but it was enough to make him even more agitated. And, to be fair, she had to hold him in order to keep him from running out the door into the parking lot which borders on a very busy road. None the less, I hurriedly donned my shoes and got Nik into the car.

I have to accept the fact that Nik is growing bigger, stronger, faster, and smarter. With that growth and development, I assume, will come tremendous gains; but they seem to be coupled with equally tremendous challenges in coping with change, communicating his needs, and being in control —or not, as was the case today— of himself and of his environment. And yet, I know that Nik is not an angry and aggressive child; this behavior is fairly new and, until recently, I have usually been able to help him work through it.

I cried all the way home —mostly out of frustration at not knowing how to help Nik navigate his world, our world. For the first time, I had to see the potential for Nik to be a danger to himself or to others should his actions be misunderstood or if someone tries to restrain him. I immediately thought of this book (which I had dismissed in the past as not being relevant to Nik) and wondered if there might be something there to help us. Until very recently, I haven’t seen Nik as an explosive child; he’s never done anything to anyone that has ever given cause for concern —except to himself.

There does seem to be a correlation, or at least I think there may be, between these explosive outbursts at PT and OT lately and a rougher-than-usual afternoon; after mornings like today, Nik doesn’t nap and his tolerance for frustration seems to be nearly nonexistent. This afternoon, he was almost manic in his nap time antics —see-sawing from giddy laughter to flat out shrieking hysteria at still being in his crib. Poor Niksdad was here with him while I was at the grocery store; when I came home, Nik had four new bruises on his head and face —one across the bridge of his nose from pressing his face so hard against the crib slats. Hours later, his forehead still bears the imprint of the mesh netting from his crib tent.

I know that we are not the first family to experience this and we will certainly not be the last. But I’d sure love some thoughts and maybe even a little advice on ways to weather this storm and still keep my sanity —and keep Nik’s beautiful little face intact.

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(Subtitled: Nikolas and the VERY BAD hair day)

In light of all the sweet comments about how well my wild child-biker boy seemed to tolerate the ambulatory EEG, I must come clean. I confess to engaging in a bit of Potemkin-izing in posting that photo. Not that the moment itself wasn’t real; rather, it was only a brief moment of levity in a very long, tiring, frustrating day. One I wasn’t quite ready to write about as it hadn’t yet reached its dénouement.

If you consider the mystique of the “biker dude” –the devil-may-care attitude, the I-do-what-I-want-when-I-want swaggering bravado typified in biker lore –well, you’ll get a slight inkling as to how our day really went yesterday. To say Nik had his own agenda would be an utter understatement. His agenda? To get the hell out of the contraption on his head –no matter what. Our agenda? To do whatever it took to keep it on for as long as possible. It was ill-fated from the start; someone was going to lose.

The initial hookup went okay. Nik thrashed and cried but he did not have to be restrained or sedated; that is a major breakthrough for all of us. (Though, I must admit I might have wished to be sedated by the end of the day yesterday!). I say initial because we made three trips back to the EEG/Sleep Lab within the first four and a half hours to repair the damage done by little fingers and thrashing heads. The sticky paste on his head, the pressure of the little metallic cups of the electrodes, the tape, the wrap, the weight of the recorder pack –which Niksdad brilliantly attached to Nik’s beloved doggy backpack; all of it was a complete sensory nightmare for Nik.

By the third visit, we had pretty much debugged the trouble areas where the tape and wrap weren’t holding. We had to break down and wrap under Nik’s chin, too. That made him ballistic! In the end, we brought supplies home to do our own repairs/reinforcements for bed time, knowing all too well that the electrodes wouldn’t make it through the night with ol’nimble fingers Nik! But I’m getting ahead of myself.

In all, during the daytime, Nik tolerated the whole get-up quite well –as long as he was thoroughly entertained every waking moment. Both Niksdad and I spent the entire day playing with Nik, keeping his hands and mind distracted from the gooey, hard, dangling things on his scalp. We actually managed to have some fun together in the process, but boy was it exhausting! As I wrote to Kristen last night, hour-long shape sorting sessions aren’t exactly my idea of a good time.

The cool schmatta on Nik’s head is actually his dad’s do-rag which he wears under his motorcycle helmet in warm weather to help absorb perspiration. We thought it was less intimidating and less post-brain-surgery looking than the flesh-toned brown cling wrap on Nik’s head. Nik didn’t seem to agree and only kept it on long enough for a few good photo opportunities. I’m telling you, the kid knows when he is on camera and expected to perform; that can be good and bad.

In the middle of the night, Nik awoke with one of his painful episodes and freaked out because he couldn’t get to his ear –it was partially covered with the wrap and tape. In his feral hysteria, he managed to pull the entire wrap off in one painful motion –along with the tape from his cheeks. As he flailed and screamed and wept, Nik kicked and glared at me. His expression vacillated between accusatory rage and pleading.

My heart squeezed tight in my chest as I tried to stay calm. (Hey, I’m great in a crisis but hell in the aftermath.) Niksdad and I managed to replace the leads which had come undone and I wrapped his head –again. With a full day of school ahead of him, Niksdad returned to the oblivion of sleep; Nik lay in his crib, his little body wracked with angry sobs. He held onto my hand, squeezing intermittently, not quite willing to punish me in full measure and unable to let go of the comfort I offered.

We stayed like that for more than an hour. I knelt by the side of the crib clinging to my composure and murmuring soothing shushing sounds as Nik began to relax. I felt like a supplicant at the altar; praying for redemption in the eyes and heart of my tiny, outraged savior. My absolution came on gentle, steady breaths as my child drifted off to a fitful, exhausted sleep. I lay on the floor and wept.

A few short hours later, I awoke to the sounds of Nik laughing and clapping both his hands and his feet –something he does when he is inordinately proud of some feat. Sure enough, Nik had managed to complete the job he had begun the night before –the job I had interrupted with my cling wrap and tape. Nearly all the electrodes were detached and dangling from the tangled mass of his gooey hair. Cognizant of his decisive victory, Nik sat up in his crib, blowing kisses to me.

We all knew it was a done deal that I was returning to the lab with Nik first thing this morning. We ended up completely disconnecting everything so they can download and analyze the information; hopefully, enough data was captured to be useful. If not, we will have to go back again this afternoon to try again for another 24 hours.

I’m not sure my sanity can withstand another assault so soon!

UPDATE: We dodged the bullet of another 24HR EEG! Whew! The doc is reviewing the data but the tech said they got a lot of good, clear recording —especially at the times we noted that Nik seemed to have some type of possible seizure activity. Most of his episodes showed up during his sleep on previous EEG’s so I hope they were able to get enough of the night time data in spite of Nik’s “hat doffing” exercise!

Right now, Nik is in his jammies and down for quiet time; I’m hoping he’ll sleep so I can, too!

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Damn Murphy anyway. I should have known better than to post all that wonderful “spring is coming, la, la, la” crap the other day. I might as well have stood in the middle of Fifth Avenue just daring the Manhattan cabbies to hit me as I crossed against the light.

Whatever it is that goes on in Nik’s head —and I mean that entirely literally —to cause such pain and distress is on the rise again. It’s been an ugly couple of days around here. Nik’s been Jekyll and Hyde, the master of the mixed message, contrarian extraordinaire. He wants me; he doesn’t want me. He clings to me; he pushes me away but gets upset when I leave his side. It’s no longer sweet and endearing. We’ve far surpassed bonding and moved right into the stalker stage.

And the pain. The physical pain that washes over him unexpectedly. While he’s playing or dining. While he’s watching Mary Poppins. It’s as if someone has stuck him in the eye with a hot poker. And Nik seems to want to blame it on someone —anyone —and I seem to be conveniently at hand. I can’t say I blame him, really. I mean, I’d like to be able to blame someone or something for the topsy-turvy days, the disjointed nights, and the bruises and tears. If I am feeling this way without the physical sensations Nik is experiencing, well, I can only imagine how he feels. Though, last night I did go to bed early with a migraine; I’ve not had those in nearly a year.

We’re back to the daily Advil habit to mitigate the worst of the pain —or at least dull it to a tolerable level. I hate when we have to resort to that, though; it really starts to wear on his stomach. Today he’s been clutching at his belly periodically. It makes me wonder if it’s the Advil or if it’s new symptom being added to the mystery ailment.

The irony is that Nik is making such great strides in so many areas; I just hate that it comes wrapped in such prickly packaging.

If I try to be really objective, I might be able to see that, perhaps, Nik’s sudden clingy, bossy, come-here-go-away behavior is an attempt at controlling something that feels out of control to him. A small measure of comfort when he feels ill at ease, perhaps? Maybe it is those things and maybe it is not. I wish he could tell me what hurts, what he feels and hears. What he needs.

Tomorrow morning Niksdad and I get the dubious pleasure of taking Nik to the sleep lab at our neurologist’s office; at 7:30 tomorrow Nik will be hooked up for a 24 to 48 hour ambulatory EEG. Thank goodness Niksdad does not have school tomorrow and will not only be around to help me in the morning, but will give me an opportunity to get out of the house for a bit by myself. The last time we did an ambulatory EEG, Nik was not walking; in fact, he had just learned to sit up a month before. I can’t help but wonder how Nik will respond to all the electrodes on his head and lugging around the backpack-recorder.

If there is a patron saint of parental sanity, please, please pray for me? For us?

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Saturday morning’s frustration with the Kid Zone left me angry and feeling like I was on the war path. It was not a pleasant sensation. And frankly, it wasn’t pretty either; I’ve been on the other side of the fence —watching another person be so consumed with the righteousness they felt that they scorched others with their heat as they blazed past on the way to vengeance and vindication —and thinking what a jerk the person is being. I must confess that my knee-jerk reaction is to do the same in the heat of the moment. This is why I was grateful that the incident happened over the weekend. It’s that whole cooler heads prevail thing…

When my mother came to babysit on Saturday afternoon I was still upset; I seriously considered going off to Starbucks or Wawa for a cup of coffee and a muffin or something sweet then going for a long drive in the country to cry out my frustration. Instead, I “put on my big girl panties” and went to the Y to squeeze in the workout I had missed in the morning. I felt better afterward; you’ve got to love the endorphin rush that comes from a good workout! As a result, I was able to deal with the childcare situation a bit more calmly.

I left a note for the Child Development Director —the person that oversees all the kid’s programs, the day care, the after school stuff, etc. It simply said “I have a child with special needs and I’d like to discuss one of the Kid Zone policies with you.” She called today and we had a good, calm, cordial, and productive conversation. I explained what had happened and made it clear that I knew the attendant didn’t know me or Nik and that I recognized I was too frustrated in the moment to try to deal with it. It old her that I appreciate that policies exist for a reason and that I wasn’t asking her to change the policy. Instead, I asked for her help in finding a solution that would both support Nik’s and my needs and honor the policy.

It was so simple. In five minutes we had a solution that works for everyone; she is going to leave written instructions for all her staff. The policy is for the protection of other children who have slipped out of the Kid Zone in the brief moment or two it takes for a parent to enter through the main door. I can appreciate this completely; I even told the Director that it sounds like something my kid would do! The solution is that there is a back door through another room which we can use as often as we need to until Nik gets used to the transition. To her credit, the Director never once made me feel like I was asking for something extraordinary or impossible. And, to my credit, I felt like I had taken a stand for my child without burning any bridges or becoming a negative force.

There is a phrase which is used so often in talking about IEP’s and disability rights —Presume Competence. I think the world would be a great deal easier to navigate if we did the same for others we deal with. Presume competence, presume that others want to help or do the right thing. Find ways to work together to arrive at a solution.

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One foot in front of the other
One foot back to counter it
Days like these you’ve got to find it in some other way
It’s all or nothing baby

Avalanche, start inside of me
Avalanche, down through the trees
Avalanche, start inside of me
Avalanche, hell down through the trees

“Avalanche” by Matthew Good

I read an email from Susan at The Family Room who didn’t tell us she was celebrating a birthday this week —earlier this evening and was all set to reply when Nik started howling like he hasn’t done in a couple of weeks. Had he not been in his chair with the pump running it definitely would have been one of those drop to the floor, head slamming episodes. It lasted roughly 40 minutes. Off and on , waves of pain and tears and head hitting coming one on top fo the other. Spent from the effort, Nik has been passed out cold in his crib for nearly two hours now.

Poor Nik was scrunching up his eyes and flicking his right ear and screaming, punching his face and crying and he STILL kept trying to hold my hands to do “If you’re happy and you know it!” It broke my heart. I guess he wanted to do the song/clapping because it’s his favorite thing to do and it makes him feel good. The juxtaposition of the clapping and the teary, scrunched up face…it was all I could do not to cry in front of him.

I thought I was hanging in just fine lately until this happened. We’ve managed to string a few good days together in a row —the nights, not so successful yet. You know, seeing how much it takes out of him and then how far back it sets him when it goes on and on…this is what makes me worry about the future. How can he make the continual progress if he keeps getting dragged down by the cycle of pain and recovery? It’s like we take a giant leap forward and then go toppling off the mountain peak. The falling is the hardest; the initial ascent is rough too —until we find our rhythm again and can catch our breath for just a little bit. It feels like we keep gaining momentum and then we hit a patch of ice and go tumbling down again.

Not the behavior or the skills that Nik is learning and mastering. It’s his health that takes the hit and then he seems to have a fairly significant regression or stagnation. It comes and goes in cycles and seems to take so much out of him. When we’re on an upswing it’s fast-moving and exciting. When the squalls hit, it’s as if an avalanche tumbles us, leaving us buried us for a while. We dig our way to the top and begin all over again. When we are in the trough of that cycle I’m not sure I can see the forest for the trees.

There’s been no real movement on the medical front in so far as finding any answers or any greater comfort for Nik; our appointment with Dr. House’s team isn’t for another three weeks. Meanwhile, we’ve got some other things coming up on the horizon. There’s a multidisciplinary evaluation next week which I am really looking forward to. It’s done by a team of therapists who work with the Developmental Pediatrician whom we see twice a year. They are wonderful people and they really like Nik a lot. More importantly, they haven’t seen him since before we pulled him out of school; I am eager to see what kind of progress they think he has made.

Equally important will be the recommendations they make for Nik’s therapies. I will not be surprised if they recommend an increase in all areas and hope they can help me make the case with Medicaid to increase services. Over the summer, Medicaid had authorized two sessions of each discipline per week instead of the one they cut back to in October (after we pulled Nik from school). Not that I want to increase the number of appointments we have, really, but they did make a huge difference.

After the team evaluation there’s Nik’s four year old check up (!!!) followed by another sedated hearing test (ABR). We had to reschedule the appointment with new neurologist until the end of the month so we had enough time to gather all the necessary records to send in advance. We will also get to see the cardiologist and the pulmonologist this month, too. That’s in between seeing the orthotist to adjust Nik’s ankle-foot orthotics and seeing the Rehab Engineer to adjust the seat and foot plates on Nik’s chair…and to possibly order a special bed for Nik. Oh, and I think there’s Christmas in there somewhere, too!

Whew, putting all that in writing makes me grateful that I have started to ask for help.

In another health update —mine— I am finally getting the coughing crud mostly under control. It turns out I contracted a staph infection —NOT MRSA — on the heels of a plain old upper respiratory infection and it turned into tracheitis. Not highly common in adults —we usually get bronchitis then pneumonia — it is basically croup. Well, you know, I like to think of myself as a kid at heart! Before I went to the doctor this week and got some antibiotics and cough syrup with codeine (that’s my excuse for my rambling writings this week!), it felt like a mule team had been tap dancing on the base of my throat and I was coughing so much, especially at night that I was hoarse and experiencing some embarrassing hygiene situations if I coughed too hard (don’t make me spell it out, people!). It’s still not so great at night but that may simply be aggravated by Nik’s renewed nocturnal waking this week. Still, I feel much better and managed to actually go work out this morning. I had to reintroduce myself to my trainer it’s been so long!

So, like I said in my previous post — you know the antithesis to this one? —it’s been a very full week.


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In the moonlight
All the words you say
Make it relatively easy
To be swept away
In the half-light
Can we trust the way we feel
Can we be sure that anything is real?

“Moonlight” by John Williams, Alan Bergman and Marilyn Bergman

Seems lately that a few of us have been off-kilter, out of sorts, unable to concentrate, feeling disconnected, or overwhelmed. I’ve been ill the past week or more with some gunk that has decided to move in for a longer stay; I’ll be calling my doctor Monday to ask about a sinus infection and bronchitis. Frankly, I’m surprised it’s taken this long for it to hit me given the stress of recent months.

But lately, I’ve been feeling odd too and I can’t say it’s all (the cold) in my head. I try to write about things —fairly significant things about Nik and his health, progress, or development —and I can only get part way through. I seem to get so easily distracted that I lose my train of thought and either fall out of the groove I was in or I take off in a completely different direction. My writing lately has felt more like “stream of unconsciousness” than anything else.

Sure, it could be the gallons of cold medicine I’ve been imbibing (liquid daytime and nighttime meds in case you were thinking something more exciting!). But tonight, on my way home from the grocery store, I discovered the real culprit lurking in my neighborhood.

Seriously, it’s been a strange time in my head lately. So many things going on with Nik, my being ill, Thanksgiving and the approaching Christmas holidays, and Nik’s fourth birthday. I feel like I haven’t had a chance to catch my breath and when I do, I can’t seem to articulate the thoughts I want to share.

So bear with me as I disentangle my threads of thought and try to regain my sense of order and control (well, in some small measure anyway).

Here’s the first of a few installments—

Nik’s speech therapy:

I’ve alluded to this in previous posts. We’re at a crossroads with Nik’s therapy; he’s not making any discernible progress as far as I can see. There are no new sounds or gestures to communicate specific intent or thoughts. And yet, he does communicate pretty clearly. Niksdad and I are the only ones who know how to interpret it though and that’s not a great thing for the longer term.
Nik’s current therapist, Miss K, is the same one that worked with him (and I use the term loosely) last year at school. She left in September to go into private practice. At the time we started seeing her, I didn’t realize that Nik’s former therapist through Easter Seals, Miss M, could still see him. Since we had already made the arrangements with Miss K, we started to see Miss M for feeding therapy; she has a sub specialty in that and we knew Miss K wasn’t equipped to help Nik with the intense oral motor therapy he needs for eating skills. I also thought the exposure to different people would be good for Nik.

Well, here we are a couple months down the road and Nik is making tremendous strides with feeding but not with communication that others may be able to understand. I think Miss K doesn’t have the experience to handle a kid with the complexities of Nik’s background; she’s only one year out of her clinical fellowship. Miss M, on the other hand, has been in practice more than ten years and has seen all sorts of kids through early intervention. After an entire school year of working with Nik, mostly in group settings, Miss K still doesn’t quite “get” him; she doesn’t see or understand the autism and she just doesn’t connect with him. Miss M has the advantage of having worked with Nik in our home for more than a year. Nik adores her and will do nearly anything for her —ok, except eat outright and talk. But the relationship they have is beautiful; Miss M gets him on so many levels. She doesn’t necessarily see or understand the autism piece but she engages Nik in a way that few others can. They laugh and clap. they take turns, they make pretty good eye contact. Miss M has made such a lasting impression on Nik that he initiates playing a game with her that he remembers from more than a year ago.

So why isn’t Miss M seeing Nik for his speech therapy you ask? Good question. She doesn’t have any more time slots available —though she says she could do both feeding and speech combined in the two sessions a week we already have. I don’t have a sense of how in tune she is with augmentative and assistive technologies. I guess I need to ask her. My fear is taking away that extra session a week that we have been using to see Miss K and not making sufficient progress with augmentative devices or strategies to help to communicate with others in a meaningful way.

As I write that, I realize how silly it sounds. It boils down to whether I want to spend an extra hour each week (including travel time) to see a therapist who totally doesn’t get my kid and who doesn’t make me feel heard and respected —not that she has made me feel overtly DISrespected—and not have any discernible progress to show for Nik’s and my time. Or spend less time but with someone who not only totally gets my son and loves him as much as her own child but who also makes me feel like I am the expert on Nik and who is genuinely interested in what insights and observations I may have to share.

The alternative to either scenario is that I spend roughly three hours each week (an hour and change travel time each way, door to door) to see yet another therapist who may or may not “get” Nik or engage him the way Miss M does. I’m not sure that’s a chance I am willing to take.
I guess when I see it in writing it’s kind of a no-brainer. That’s one of the many things I love about blogging; it allows me to stop and try to put my thoughts in order and —voila! The answer was right there all the time.

Thanks, I needed that!

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Nothing changes
And nothing stays the same
And life is still
A simple game
~ The Moody Blues “Nothing Changes”

Plus ça change, plus c’est la même chose ~ Jean-Baptiste Alphonse Karr

We’re finally home and Nik is settled into bed after a long, exhausting day at the hospital for his MRI.

I’m too tired to write any cute stories about how Nik charmed the nurses (he did) or how my mother thought the doctor was hot and well-hung. I kid you not! My 76 year old mother…dear God, I need a drink— or a shower— after that one! In her defense, he was extremely handsome but I didn’t, um, “Check out the package.” (To all my male readers out there who are cringing, I apologize. Truly, I do! You know that’s not my usual style but it was my mother for heaven’s sakes! I couldn’t NOT tell that one!)

The long and short of things with respect to Nik is status quo. There is no change in Nik’s brain imaging. They even scanned all the way down to include the first few of his cervical vertebrae to make sure there was no change in his C2-C3 fusion (a simple congenital fusion, not to be confused with Klippel-Feil Syndrome). Everything looked “Nik normal.” No change at all.

That’s very good news because it eliminates a whole bunch of really awful and scary things as possible causes for the continuing episodic pain. It’s not very good news because it doesn’t point us in any direction to look next.

Meanwhile Nik is back to not sleeping through the night. It was nice while it lasted —all three nights of it! And the episodes continue…

I spoke with Dr. Mary this evening; she is going to put in some calls to the “fabulously brilliant” neurologist we’ve seen. Maybe she’ll have better luck getting a response from him. She wants to see if he has any brilliant ideas that no one else has been able to come up with. I’m all for that but I still resent the fact that the guy never bothered to call us —or even have someone from his office call us —after we’d called about Nik’s head injuries in September or his EEG in July. I am frustrated but I also know that this guy is the most highly respected in the area and so I will put my personal feelings aside —for now —if he can truly help Nik.

But the second he blows us off again? I already have a new neurologist lined up.

And Dr. Mary has not gotten a reply from the diagnostic group. She’s calling again on Monday. If she has no reply by Wednesday, I’m going to call in a favor from a friend at the hospital; she’s a well-connected administrator who can give me names and numbers of the doctors on the team and any inside information. If I need to cal them myself or drop by the next time I’m at the hospital, say next week… Hey, you do what you have to do for your kid, right?

Tonight, though, that looks like putting on the kettle for a cup of tea and settling in with a good book.

I’ve just started reading Tom Groneberg’s One Good Horse. I don’t know that I would have picked it up if it weren’t for Jennifer as it’s not necessarily the genre I am drawn to. But I feel such admiration and affection for her and her three beautiful boys and have such a strong sense of knowing her that I wanted to get a sense of Tom —beyond the little bit Jennifer has written on her blog.

So far, I am enthralled. I’ll tell you more after I’ve finished.

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