Archive for the ‘communication’ Category

When I was a much younger woman —in my wild and impetuous days as a single gal in NYC— I had a friend, Anne. Anne was roughly a dozen or so years older than I and was a single mother raising two young pre-teen boys. Though Anne was far from perfect —she reveled in being right about things (and she usually was) — she had a heart of gold and a righteously protective streak a mile wide. She would offer me the shirt off her back, the food in her cupboard, and a soft place to land when my world came crashing down around me. She was also the first to stand by a friend in need —“fighting the good fight”— or to teach that same friend how to stand up for herself. We lost touch a number of years ago through simple neglect; our paths diverged so greatly after the birth of my son, the geographical distance between us, and who knows what else.

Anne always had a habit which annoyed me to no end; every time we would go out to eat, she would ask me if I wanted to “join the sharers club.” She always wanted to share whatever we each ordered; I, on the other hand, never wanted to share. Call it miserly, greedy, thrifty —I was, after all, a single woman living alone and pinching pennies in a very expensive city— but I really got annoyed. Anne never took it personally though. She would simply smile and say, “Aw, sweetie, you don’t know what you’re missing. One day you’ll realize the joy of sharing.”


Amid the clatter of emptying the dishwasher —Nik’s laughter echoing through the playroom and into the kitchen— I hear the sound of uneven footsteps and the banging of a heavy object as it bounces along the floor. I turn to see Nik dragging one of his new toys over to the kitchen gate. As he hoists his little cash register toy up over his head, I fly to the gate to keep the toy from crashing to the floor. Nik stops mid-toss and laughs. “Are you all done, buddy? Do you want Mommy to take your toy?” I should know better than to ask a question like that; Nik doesn’t have the communication skills to answer such a query.

I take the toy from him and begin to place it on the armoire near the telephone —still in sight but safely out of reach. Nik begins to vocalize something and gestures at the same time —tapping the fingertips of his right hand into the palm of his left as if he’s making a “Tee.” My eyes widen in surprise. Am I seeing what I think or is it just a coincidence? I’ve seen Nik do that gesture before but assumed he was just copying the video and didn’t really understand the concept.

“Sweetie, do you want to share the toy with Mommy? Is that what you want? You want to play with Mommy?” Nik emphatically begins to pat his palm against his chest —his universal sign for “Yes, please. I really want it.” How could I possibly resist such an entreaty? Picking the toy up from its high perch, I carry it to the sofa and ask Nik to join me. He squeals as he races to the sofa and settles in so close to me that I have to put my arm around him so I don’t accidentally elbow him in the face as we play.

For fifteen minutes we share. We take turns and sing songs. Nik makes free with his kisses —a rare treat lately since he’s becoming such a Daddy’s boy. When he’s had enough, Nik signals to me that we are finished playing by picking up the toy and placing it in my hands. With one final kiss, he slides off the sofa in search of new entertainment. I sit dumbfounded.

Though I’ve not thought of her in a long time, Anne’s image comes to mind. I smile and realize I now understand her gentle words of many years ago. As usual, she was right.

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

~William Shakespeare~

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

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

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

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

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

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

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

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In an effort to support Nik’s intense and newly blossoming desire to communicate, I’ve been willing to try almost anything. To that end, I’ve become a convert to a near fanatical movement sweeping the nation in throngs of babies and small children. Even conservative media outlets have bought into the hype!

I’ve resisted the lure for a long time. I had a plethora of what I considered very valid objections to joining the movement; the time and expense were too great, Nik didn’t have the coordination to perform the requisite actions, and I would be the one doing all the work…and so on.

Well, like any good cult, I found myself drawn in, curious to find out more from the likes of these die-hard followers (her, her, her, her, oh and her, too). I kept reading about the enjoyment their children got out of it, the diminished stress levels they personally experienced as a result and— gosh darn it— how cute it all is! Being a sucker for cute, devoted to my son having more enjoyment in his life, and a slave to my own stress, I simply had to check it out.

I was hooked. But how to support the habit? The library. Yes, it’s true. Even the library is on board!

You know, it’s said that a cult will make you turn your back on those you love. Well, I hope Mary can forgive Nik his betrayal; apparently, he’s got a new main squeeze. Her name is Rachel. All I have to do is start to sing a refrain of one of her siren songs and Nik starts smiling like a love sick schoolboy. No, really, I mean it; he even begins to blow kisses to the air! Sorry Mary, it’s been a jolly holiday. But this thing with Rachel? Well, it seems pretty serious.

Consider it a sign of the times. And the times…they are a changing!

Nik getting his Rachel fix

Nik spontaneously signed “eat” for the first time this morning…
while watching the video, of course!


The use of cult references is intended for purely humorous effect. Please accept my apology for any offense given; it is entirely unintentional.

In the interest of full disclosure, I must say we have been working with Nik using the sign for “eat” for a while now. He understands it, he will mimic it if he’s specifically asked within the context of meal time. He has not, before today, ever spontaneously signed this or any other sign.

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Well, in a continuation of Kristen’s reference to a perfect storm, I must say that today’s evaluation was absolutely incredible. I am practically bursting with hope and joy and good feelings. And you know what? It feels good! It must be contagious! I know, I know, it’s the whole karmic cycle, the you-get-back-what-you-put-out-to-the-universe kind of stuff but…REALLY! I am not sure if the car was actually running as we drove home; for all I know we could have been flying I felt that good!

The evaluators really got Nik —and he was gracious enough to let them. In an hour and a half, this team of two people was able to discern more about my child’s personality, his intellect, and his communication abilities than an entire school full of therapists, educators, and psychologists was able to over the course of fifteen months! That said, I must also acknowledge that both Nik’s OT (Miss D) and SLP (Miss M) contributed greatly to the process; Miss M accompanied us this morning and Miss D talked to the staff OT yesterday to provide her input. I also have to take a great deal of credit because I made damned sure that this was not going to be another “wasted opportunity.” I provided tons of information, insights, and feedback. I set up our morning so that Nik had opportunities to settle in a bit. I went in with no specific expectations —willing for once to let the process take us where it would.

And, oh, what a wonderful ride!

In the end, we came away with some concrete recommendations for a couple of basic devices and —even better —how to actually use them. Not just “Push this button to record …” but how to actually implement them as a fundamental part of Nik’s daily routines; we are just beginning the administrative process to actually get them. Perhaps most importantly, I came away with the absolute knowledge —firmly rooted in my gut now, instead of just in my conscious, rational mind —that the decisions Niksdad and I agonized over all those months have paid off. Richly.

What the team saw in Nik this morning would not have been possible even three or four months ago. I cannot fault the school for not wanting to see these things in my son, but I do blame them for their unwillingness to provide the environment he needed to make the gains I always knew were possible; I think they simply didn’t know how and would not admit it.

DL, the assistive technology guru was all that I had heard he was —and more. Or is it less? This very physically imposing man was the gentlest of giants with Nik; after a very momentary meltdown (on Nik’s part, not DL’s) there was an instant connection. DL engaged Nik in a way that simply captivated all of us. Nik gave his attention in brief intervals with an intensity I am seeing more and more lately. It is an awesome thing to witness in my child. I wonder if this is sort of like what Drama Mama was describing in this post today. In any event, DL was masterful in the most understated and reassuring way. Watching him in action with Nik was a gift.

During the course of the evaluation we watched Nik do things he’s never done before. I don’t know if he felt the good vibes and knew it was safe to fully reveal himself but it was remarkable. Sure, he sorted some cups by size and then by color (yay! those sorting and classifying skills are finally kicking in!), but Nik came to me seeking comfort and reassurance —not something he really does even in the throes of his worst episodes —and he accepted it. He complied when the OT asked him to come back to sit down with her. He initiated play with DL and then responded with appropriate frustration when DL wouldn’t let him do something he wanted to do.

DL commented to me, “it’s very obvious Nik fully understands physical cause and effect but he also clearly understands social cause and effect.” I was floored. How could this man be so incredibly insightful about my “challenging child” (what he used to be called by some of the staff at his school)?

And when did my son suddenly catch on to this whole social cause and effect thing? Clearly I wasn’t looking when it happened!

I imagine that — much like life in general —everything is a matter of perspective. DL is trained to see all actions and reactions as communication; in his eyes, Nik was communicating loud and clear. The objective, he says, is to help Nik find ways to organize those communications and to learn that there is a dance of give and take.

This morning’s experience left me with the very good feeling that Nik will not only learn to do this dance but that he will, in time, become the master.

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I really can’t say
How I feel right now
I would if I could
But I don’t know how
Just give me some time
And I’ll come around
I’ll pick myself up
I’ll dust myself down

~ I Really Can’t Say (UB40)

? ? ? ? ? ? ? ?

If you need words for this entry go here.

(For more Wordless Wednesday posts go here.)

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Apologies for the disjointed writing which follows; I am struggling to find words and string together coherent thoughts lately. I seem to be suffering from sort of mental (emotional) malaise and am finding that I get easily distracted. That is why I have been so “bloggy quiet” as Kristen wrote to me in a recent email.

Nik’s been ill again. It’s nothing mysterious or scary; just the upper respiratory crud that’s going around with a touch of stomach bug thrown in. He’s pretty much over it except for the super snotty nose which makes it hard to breathe and sleep at the same time. Breathing seems to be winning lately.

In spite of the illness, the tyrant, er um, I mean Nik has been ruling the house with an iron fist. His adoration for Mary Poppins? At an all-time high. If I am within reach of his hands, they are grabbing mine and dragging me toward the TV to turn it on for him. I think he now knows how to SPELL Mary Poppins. God knows, if I say the name he starts squealing and dancing around like a ‘tweener who just won Hannah Montana tickets from some radio show! Did I say I was fond of Mary Poppins? I may have been mistaken.

When I won’t give in to the MP obsession, Nik insists that I play. Never mind the growing mountain of laundry, the cat hair clumps on the carpet, the breakfast dishes in the sink, or the fact that Mommy hasn’t had a shower yet, Doesn’t matter to him. I am getting stronger at telling him “No” and sticking to it. Even when it results in the world’s cutest suck-up tactics. Really, where does the boy learn these things?! Nik will come over to the gate and look at me and start making kisses with his lips. If he’s really angling for my attention and cooperation, he will sometimes walk to the entertainment center, tug on the door, and say “Mamamama” before he comes back to tug my hands again. If that doesn’t work, he goes for the triple play which includes his rendition of “If you’re happy and you know it…” (lots of huh-huh’s and ba-ba’s with a few ga’s thrown in for flourish) combined with the kisses and calling my name.

Sigh, the boy is a master manipulator, um, negotiator. (Hey, it’s a matter of semantics, right?)

On the health front, Nik’s mysterious bouts of pain have diminished quite a bit since we started treating them like hypoglycemia. We still deal with the nocturnal waking but not as consistently. No word yet about scheduling his video EEG; we are entirely convinced his pain episodes are not related to seizures. None the less, it will be good to have a clearer picture of his seizure activity, too.

Nik is doing well with all his therapies; nothing really new and exciting to report yet, just slow and steady progress. Consistency. He did recently learn the concept of (and word for) smell. Now he loves it when I give him things to smell. His favorites seem to be peppermint extract and one of his blankets fresh out of the dryer. The kid’s got good taste. Of course, there is also the random smelling of his socks when he takes them off; he is all boy, for sure.

Nik is also getting more adept at communicating —or at least knowing for himself and trying to communicate to others —when he needs a break. Last week in OT, Miss D kept trying to get him to do something and he kept trying to get away and go into a room with the lights off. Usually, Nik will do anything for Miss D but he wanted no part of even playing with a favored toy. I wondered aloud if he was feeling like he needed a break. God bless Miss D for listening and trusting; she let him go off on his own and, sure enough, he took a very short break in the darkened room and then came back out to play with her. I’ve noticed him doing more of this sort of thing lately when he has had multiple appointments back to back or been out to the store or the mall with Niksdad or me. Where he used to simply fall apart, now he first tries to find some quiet space for himself. Often it looks like dragging s few toys into his Thomas the Tank Engine tunnel for some quiet play, or hiding under his giant green bucket with his star stacker toy.

Nik has also recently decided that naps are for babies. Oh, don’t get me wrong, the kid goes down every afternoon after lunch; he just doesn’t sleep anymore! When I offer him a toy or a book he will take it and play quietly in his crib. Sometimes he will simply sing little tunes to himself. He has begun to push the limits, though. The toys he has don’t entertain him long enough and he wants to be up and about. Yesterday, he cried and wailed in anger and frustration for a good 45 minutes before I finally got him up. Today he is singing. I suspect once he figures out that I am not coming to get him soon those songs will turn into protests.

As I write all this it occurs to me that what I am describing is a lot of age appropriate or developmentally appropriate behavior. What a nice thing to realize!

We are definitely approaching a crossroads of a sort; though Nik has many, many delays and multiple challenges, he’s doing very rapid catching up in some areas —especially cognitively. He’s learning the art of manipulation, effective use of the nuances of resentment and anger, and the value of judicious use of self-injurious behavior. Where once it was easy to distract Nik and redirect him from undesirable behavior, now he is set on what he wants and will brook no opposition. Sigh; he is in for a lifetime of heartache in that regard! Niksdad and I are constantly re-evaluating our methods of dealing with some of the less than pleasant behaviors; we need to make sure we are setting expectations that are reasonable and attainable for Nik while also making certain that he does not inadvertently get rewarded for bad behavior which is within his actual control. It’s that last bit “within his actual control” which is difficult to determine sometimes.

The pressure to interpret Nik’s budding communication is also tremendous. His voice, face, and body have all become much more expressive. The range of communication —that is to say, the variety of methods he uses —is not so great but, those methods placed into context communicate so much.

Tomorrow there will be a lengthy evaluation to determine what, if any, augmentative/adaptive communication device might help Nik find more and better ways to communicate. I am numb about it, frankly. Having been through so many evaluations and interventions in Nik’s short life —going through cycles of hope and disappointment, anxiety and frustration, and finally feeling left adrift to figure things out on our own —I am not certain anymore what I hope and expect from tomorrow’s experience.

I will try to write more about that after the appointment.

So now my brain has turned left when I want it to turn right and Nik has begun the wails of protest. Sigh…small measures of quiet are so hard to find some days.

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