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Archive for the ‘behavior’ Category

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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You know it’s not a good sign when your child has had more sleep than you.

Lulled into a false complacency about leaving him unattended long enough to go upstairs to finally get dressed, I peek in on Nik who is happily watching Mary Poppins and clearing out the toys from the play room.

There, I’ve finally acknowledged it —the family room is no longer; it has been overrun by a deceptively small, sweet-faced, impish dictator. Nothing is sacred in that room . All objects not currently in the rotation of favored playthings get summarily tossed over the gate in to the back hall. This includes every single pillow. I swear, if the kid could heft the sofa cushions over the gate those would be history as well!

In a moment of mingled courage, naivete, and stupidity, I dash upstairs to shinny into my jeans and pull on a sweatshirt; no time for glamour while there’s a curious little boy on the loose. But, really, I think to myself, once he’s cleared out the room, what could he possibly get into? I take the extra minute or two to select a pair of socks and grab my sneakers to put on while I sit at my computer and pull my email.

The skin on the back of my neck begins to tingle; my mommy-sense is picking up on an unfamiliar vibe. It’s too quiet. I look over the railing from my office space in the loft. My heart kicks into overdrive as I race down the stairs.

Nikolas has staged a coup upon my sanity and forever shattered my already fragile sense of peace. I don’t know whether to laugh or cry; I do neither. Instead, I do what every self respecting mother of a child teetering on the brink of dumbfoundingly cute danger —mild, but danger none the less—would do; I grab my camera.


ETA: This is a re-enactment. No children were hurt in the photographing of these events. And, no, I didn’t let Nik re-enact the part where he actually tried to climb up yet another level to get things off the top off the entertainment center!

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And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before.

Help me if you can, I’m feeling down
And I do appreciate you being around.
Help me get my feet back on the ground,
Won’t you please, please help me?

John Lennon/Paul McCartney

There are days when I feel so utterly lost and helpless for what to do about Nik’s ongoing health challenges. I’m not talking about the daily routine of tube feedings and medications, the seizures, or the weekly trips to a plethora of therapies —PT, OT, Speech, Feeding, and the multitude of doctors appointments. No, those are pretty much second nature after all this time.

Days like today, after nights of interrupted or nearly nonexistent sleep like last night (and the night before, and the night before that, and the night before that…) —when Nik is especially quixotic, going from happy to distressed and back again in mere seconds — these are the hardest for me to bear. When Nik is in the throes of battle with his mystery ailment —which seems to be continuously morphing with each day, adding or changing symptoms — that is when I am at my nadir. I am exhausted and anxious, worried, frustrated, and confused. I have been so grateful thus far that Nik truly doesn’t seem to have any self-injurious behaviors except when he is ill or in pain. But lately that’s been a constant.

When it begins, I don’t know what to do to help him. He’s still small enough that I can try to hold him and comfort him through the worst of it. At the very least, I am able to provide an environment where he cannot do too much harm to himself as he thrashes and writhes, kicks, and pounds his head against the floor. The floor is the one I have the most trouble with; it is a laminate floor over concrete slab. I am so worried that Nik will give himself a serious concussion. He already has a permanent lump on the side of his forehead from hitting it against the side of his crib at night and a new bruise has appeared on his cheekbone —about the width of the space between two slats. Whatever is causing the pain seems to respond to Advil but the kid can’t live on the stuff forever! And the doctors, so far, are no help at all.

Days like today are utterly exhausting to me; I cannot imagine what they must feel like to Nik. A string of days such as we’ve had lately with Nik’s fever, rash, cough, etcetera leaves me feeling antsy, gloomy and short tempered with the entire world. I need to get out for something more than a quick trip to the grocery store or the gym. Niksdad, bless his heart, is so busy with nursing school all week and working every weekend that even when he’s home he’s spent, too. And he helps where and when he can, he really, really does.

Respite isn’t an option at this point because of Nik’s medical needs; they are great enough to require skilled nursing care because of his g-tube and seizures yet there is such a shortage of home health workers that we cannot find someone willing to work just a few hours a day, a few days a week. On the other hand, they are not so great that he qualifies for home nursing care through his insurance. And because of Nik’s autism we are reluctant to leave him in the care of just anyone. Obviously, when Nik is not sick I can take him out with me but even that’s been quite a while; he’s been sick off and on for seven weeks now —the worst being the past ten days.

So, what do you do when you’ve reached your breaking point and there is no relief in sight? When you are at the end of your rope and listening to sad or emotional music so you can cry tears of release? When you can’t stay in the same room as your own child for very long because you just don’t have the energy or patience to handle their behavior or to engage, stimulate, or redirect? When you feel like a bad parent but you know it’s the devil of sleep deprivation and anxiety talking in your ear? What do you do?

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Life isn’t about waiting for the storm to end;
It’s about learning to dance in the rain.

Jennifer over at Pinwheels commented by email on my last post (the fun video post, not the pathetic self-indulgent post) that “it’s just as it should be…sunlight always comes after the storm.” So why do I constantly feel like I am searching for the rainbows and somehow missing them? I mean, it rains then it shines and it rains again. Then the sun peeks out and the clouds roll in and …crazy emotional weather in my world these days!

Long story short, the “affliction” I mentioned before continues to rear its ugly head. Nik’s fever continues; he woke with a temp of 100.5 at 4:45 this morning. And today it was the fabulous Miss D (our favorite OT) who was treated to Nik’s frightening manifestation of mysterious pain. One moment he was playing happily with a shape sorter, the next minute he was screaming and writhing on the floor in abject distress. NOT behavioral.

This happened a few times toward the end of our session and right before our weekly playgroup. While Miss D and Miss T set up for the group, Nik played independently for a bit, happily pulling balls from the ball pit and tossing them. He’d toddle off to chase the balls and the return them to the pit, laughing hysterically the whole time.

Except for the time he tripped and slammed face first to the floor.

Needless to say, the morning was no longer much fun for either of us. My poor battered baby sobbed and wailed in my arms, bleeding from his mouth. My throat felt like a boa constrictor’s prey as I fought back my own tears and tried to calm Nik enough to verify that his teeth were in tact. Thank God for small mercies. He does, however, have bruises from his chin all the way up the center of his face to the bridge of his nose. They are a nice complement to the ones on each side of his forehead from banging his head against the sides of the crib each night.

You know it’s bad when you have the pediatrician on speed dial on your cell phone. Off we went for the fourth visit in as many weeks. The prize for using our frequent visitor points? More antibiotics for the dual ear infections, the second round in a month. Sigh…

Well, at least it explains the nocturnal waking, the low-grade fever that wouldn’t quit, and the screaming head-banging…for now. Until we see the ENT tomorrow and are told “No, he doesn’t have an infection; those pediatricians always jump the gun.” I kid you not, we’ve been told that before. But the good news is that the immunologist moved Nik’s appointment up to this Friday and has ordered some blood work. Well, the appointment is good. Bloodwork? Not so much.

And yet, through it all we keep finding the tiny pockets of joy (like Susan mentions here) and savor them like forbidden sweets filched from Grandma’s candy dish when the adults weren’t looking. They are all the richer for their hard-earned and unexpected sweetness.

And, truth, in poetic irony…it has indeed started to rain tonight. The thunder is booming in the distance and the rain has just started to pelt down on the skylights. (I love a good storm!)

Perhaps tomorrow will bring the rainbow after all.

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NOT ME.

Tonight we went to dinner at a local restaurant —a new place for us that we’ve heard some mixed reviews about. We figured it was early enough in the evening that we would be ahead of the crowds and Nik could have an enjoyable time with us —licking foods from our fingers and utensils and feeling like he was completely a part of the “normal” family dining experience.

What a freaking disaster! As soon as we walked in the door, I knew it wasn’t going to be the stellar experience we were hoping for. The hostess didn’t seem to quite grasp the concept of two adults plus a wheelchair. Yes, that’s right, I said a wheelchair. When we dine out we have to take Nik’s special seating system which can be a bit cumbersome. For some reason all the dumbass high school girls working the hostess duties at every restaurant we go to assume that Nik will sit in a high chair —this despite the fact that he is being pushed in a pseudo-stroller the size of a freaking Cadillac El Dorado and I say “No high chair; he won’t sit in one and we need room for his wheelchair.”

So, here we are tonight at the Texas Roadhouse, with Nik and all his gear in tow and the hostess wants to stop and tell us all about how we can pick our own steaks from the display or order from the menu. Nik is practically climbing over Niksdad’s head at this point and I just said, perhaps a little more curtly than I should have, “We just want to get settled in at a table.”
So little miss hostess huffs and walks on, leading us to the very back of the restaurant.. She gives us a table in the middle of the small, cramped room —the perfect location for Nik to do the most damage possible as people are walking past. OK.

As Niksdad and I start to settle in and unpack Nik’s pump and feeding stuff, Nik decides to be Super Baby and tips the table over. Yes, that’s right. I caught it just before the plates went crashing to the floor. Not a single server lifted a finger to help. Yes, indeed, I’m loving this restaurant experience.

But back to the mother of the year thing—

Here Nik’s been ill for weeks and we finally start to get a handle on things; that should have been our first clue that it was a bad decision. We decided to try tonight because Nik was having a pretty good day. Until we got to the restaurant; the noise and the music and the lights are just so overwhelming. Up to this point, Nik has been playing happily and placidly most of the day. Toy throwing has been almost non-existent and he’s been very engaged and making lots of eye contact with me.

As soon as we got settled in and Nik tipped the table, it was all down hill from there. The toy we brought tonight which normally can keep him enthralled for 20-30 minutes? Tossed within the first 3o seconds. Ditto everything he could possibly reach on the table. Fortunately, it wasn’t much, but he sure tried!

Sitting across from Nik, I watched him get all “spectrummy” as I call it; he was in his own little world, grunting, squeaking, waving his hands and turning his head back and forth very rapidly. Little response or acknowedgment of anyone else around him and no eye contact at all. All the things he used to do so consistently just a few weeks ago. Before we took him out of school, Nik would come home so overwhelmed and sensory-overloaded that he couldn’t function. That is what I saw tonight and it broke my heart. It took every ounce of strength I had to not break down and cry in the middle of the restaurant.

It didn’t help that we were surrounded by other tables with couples looking on. Every once in a while I glanced up and could see some odd looks directed Nik’s way. I’m sure the people didn’t realize they were being rude or hurtful but goddammit it got under my skin in a way it hasn’t in a very long time. Maybe it was my own projection, but it felt like they were judging Nik and finding him lacking or odd or weird. It hurts and it makes me angry and sad.

I’m trying so hard to work with Nik every single day now; to spend time getting down on the floor with him and engaging him as much as possible. And it’s been working pretty well. But tonight reminded me of how fragile it all feels. How quickly the thread can unravel from the tapestry we are weaving together. I am anxious that tomorrow will be a challenging day for us both —me because I will be watching for telltale signs of regression or detachment; Nik because he may be exhausted after tonight’s overload. I truly haven’t seen him like this in so many weeks. Possibly since the end of summer school in late July.

To add insult to injury —the food was mediocre and over priced.

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I think I’ve mentioned more than once recently that Nik seems to be making really wonderful strides in the two weeks since we’ve taken him out of school. (See here, here, or here.)
While, technically, there is still much to be resolved around services such as PT, OT, Speech therapy, Niksdad and I are at very much at peace in our hearts with whatever comes. And it seems with each passing day there is some new affirmation of the rightness of our decision. Today’s came in an unusual and unexpected medium —a temper tantrum. Note, I did not say a “meltdown” or “coping challenge” though, in truth, the latter is exactly what it was.

The scene was my parent’s house. My parents live a mere six doors down the street and it is not an unusual occurrence for us to walk down to visit with Nanny and Granddaddy. In fact, when asked if he wants to go see Nanny and Granddaddy, Nik will usually drop whatever toy he is holding at the moment, squeal, and make a bee-line for the gate in anticipation of the journey. To put it mildly, Nik adores his grandparents; they have a lovely mutual admiration society going.

When we venture off to see Nanny and Granddaddy, we almost always go through their garage and into the house, where Nik makes the rounds of every door on the first floor. The layout of my parent’s home is such that Nik is able to make a path around the hallway and practice going up and down single steps unassisted. He loves the sense of freedom and autonomy, I am sure; I loathe having to chase him from door to door telling him “No door” over and over.

Today, however, my parents were outside working in the yard when we arrived. Nik greeted them with his usual affectionate zeal which involves clapping Nanny’s hands and rubbing his forehead against Grandaddy’s chin. A little unorthodox, true, but no less joyful and affectionate than hugs and kisses. Greetings over, Nik marched himself right over to the garage door and waited to be let inside. When he realized that wasn’t going to happen, well, he lost it.

And he didn’t.

In the past, Nik has —as many of you are very familiar with from your own child’s meltdowns —simply willed the bones in his legs to turn to liquid and hit the floor or ground with alarming force as he screams and cries. Nik would usually get so worked up that often Niksdad or I would simply have to pick him up and either carry him or put him in the stroller and leave.

Today, however, Nik screamed and cried and carried on so that the neighbors must surely have thought that wicked old man (Granddaddy) must have hurt the poor little boy! Poor Dad; he stood looking at his beloved grandson and was helpless. I’ve never seen a man look poleaxed like that before. But Nik kept his legs under him. In fact, once he realized that Granddaddy wasn’t going to let him inside —and he tried desperately to get Mommy and Nanny to acquiesce, to no avail —Nik simply grabbed Grandaddy’s hand and began to drag him away.

Mom and I thought he was going to try the front door. Nope. Nik proceeded to drag his Granddaddy down the driveway and out to the street —straight home to his own front door! Nik cried and fussed and fumed the entire way home as I trailed along behind pushing the stroller. God bless my father; he knew exactly how huge a development this was and he went along with Nik willingly.

Once we got Nik inside, he let go of my hand and marched, I swear he marched, through the dining room, turning right into the kitchen and proceeding on into the family room —”his” room — and threw himself onto the floor for a good hissy fit. I must have drawn blood biting the inside of my cheek to keep from laughing out loud.

Not missing a beat, I grabbed one of Nik’s new books which plays music (of course, would he have any other kind?) and sat down on the sofa to play with it. Nik’s curiosity won out quickly and he came to sit in my lap. In. My. Lap. He sat, leaning against me, playing with his book for a good ten minutes. He’d press a button and I’d sing along with the song and point to the pictures for him. Every once in a while he just sighed and turned to look at me with a sweet smile. I’m sure I sighed a few times, too.

I can’t help but wonder how differently this would have all played out had Nik still been in school.

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Naturally
When I discover the cleverness of a remarkable me,
How can I hide it
When deep down inside it just tickles me so
That I’ve gotta let go and crow!

Peter Pan (stage version) “I’ve Gotta Crow”

OK, so I know I said I’d be offline for a bit doing the research and whatnot for our yet to be scheduled follow-up to the IEP from hell. But, well, I gotta crow! Besides, I am waiting for a critical bit of paperwork which school doesn’t have ready yet. Uh-huh, you guessed it; Nik’s IEP isn’t even in it’s final form yet and we are ELEVEN DAYS past the meeting date. Wonder what they would have done if Nik hadn’t been ill all last week

So anyway, back to the crowing bit.

Today, Nik is completely fever-free; he still has the runny nose and slight cough but he’s better. Sooooo…I took him to OT, followed by PT, then playgroup this morning. It was an experiment to see if he could tolerate the full two hour window of work and play.

Nik did awesome.
He gave Miss D (the OT) a run for the money with some things but it was evident to both of us (D and me) that Nik was so happy to be there with her. He did pull his own little “gaslight” on Miss D when she made him ride a scooter around the room. He fought and screamed and kicked and thrashed. Miss D never gave in. When they made it to their destination —the ball pit —and Nik got off the scooter, he gave Miss D a smarmy little look that said “Ha, this is what I wanted all along.” He laughed and toddled off smirking. What a stinker.

In spite of his protests during the scooter ride, Nik actually used a lot of vocalizations and inflections (where’s the speech therapist when you want her, right?). He also did a lot of really great, focused work doing tasks to completion multiple times where he used to simply throw things midway through and go in search of a door to play with. He even let Miss D swing with him for a good long time.

He also did a great job with Miss T during his PT session. Lots of hard work because we are trying to help correct a muscular imbalance in his hips which has developed over time. Nik doesn’t like to bear as much weight through his right hip as he does the left; it’s simply a matter of uneven use and posture but it’s become a habit we need to break. He fought it but made it through and did some nice things in the process. Nik’s gotten pretty good at communicating when he’s either bored or overwhelmed and needs a change of activity. When he’s bored, he throws the things he’s playing with (blocks, puzzle pieces, etc.); when he’s overwhelmed he throws things, too, but it is accompanied by a fit of uncontrollable giggles. Hey, I suppose ti could be worse, right?

So the real crowing is about to start…playgroup. Nik was so present and focused. He played nicely —appropriately and calmly —with a variety of non-electronic toys. Sure, Nik still obsessed about each door and tried to get to them whenever he could and he stuck to lots of things he already knew how to do well. But he tried several new activities and seemed to enjoy them.

He crawled under a low obstacle course Miss T had set up; Nik is not overly fond of crawling or being on his belly and this activity required both. He did this same activity three or four times; each time he did it better and more smoothly.

He played with a baby doll, giving hugs and kisses on the forehead!

He interacted socially with people as if it were a natural every day occurrence for him.

He wanted what two of the other kids had and came over to them to check it out!

I know that many of you understand how some of these things have rocked my world today —in the best possible way!

I think I said this to someone in an email last night —
I am convinced that having Nik away from the sensory overload of the school environment for more than a week has made a tremendous difference in his ability to self-regulate. This, in turn, helps him make such wonderful strides as he did today.

I am so proud of my son —today and everyday; he makes me crow with glee!

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