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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.

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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?

*sigh*

(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!
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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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