NB: The following is, um, lengthy (says the mistress of understatement). Please, settle in with a cup of coffee, a bottle of scotch —whatever your beverage of choice may be —and enjoy the ride!
I get the sense that there is a mass movement taking place among many of our children right now; it’s a movement encompassing sensory regulation, social development, speech and language, motor skills, and improving health. Truly, all you have to do is read what’s going on with so many of Nik’s cyber-pals —GP, Isaac, Fluffy, Maizie, Miss M, Bud, Charlie, and so many others —and you can’t help but feel that this truly is a rousing good start to the year.
Now, that’s not to say that everything is perfect and rosy every day for every kid. Of course not; the learning and developmental trajectory for our kids doesn’t seem to be quite as linear —certainly not as smooth and consistent — as the average child. I like to think of it as more of a sine wave. Some days are up, some down. Lately, it sure feels like there’s an awful lot of “ups” happening in our household and around the blogosphere.
I think Nik has made tremendous strides in overall sensory integration and learning to tolerate and accept certain kinds of input. He certainly is showing signs of becoming increasingly self aware and is finding ways to give himself breaks and down time that aren’t necessarily preceded by a complete meltdown —or “coping challenge” as I sometimes call them. Perhaps it’s a combination of his growth and development and mine, too. I am trying to adopt some of Kristen’s Zen attitude and am practicing letting go —and continuing to really trust my instincts even when others would tell me they’re wrong. It’s paying off in myriad ways.
It is said that when a person loses one of her senses she finds that the others become heightened. For example, a deaf person’s sense of touch may be very keen, or a blind person’s sense of hearing or smell seems to increase. Perhaps that is so with parents of non-verbal children; perhaps our intuition becomes heightened to allow us to really tune in to the subtleties of our child’s body language and facial expressions. I truly feel that has happened with me and Nik.
The multitude of ways Nik is communicating now is astounding to me. He still doesn’t’ speak and he won’t point or grunt but he will look very pointedly in the direction of the thing he wants if he is seated and unable to get it for himself —all while making happy little song-like sounds. If what he wants is out of his reach and someone is nearby, Nik will insistently tug at their hand in an effort to drag them to retrieve it for him. More and more lately, I find myself being willing to go along to see where he is taking me. Sometimes I know what he wants but I want him to ask for it. Others, I think I know what he wants and he ends up surprising me. Always, the communication is clear, determined, and involves some joint referencing.
Nik continues to be highly motivated by and responsive to music. We have specific songs for mealtimes, diaper changes, brushing teeth, washing hands, giving medicine, sensory brushing, playing a certain game together, and bed time. Nik will often start to hum one of those songs to indicate he’s ready for a diaper change, a meal, play, or bed. There are many, many other songs we sing too but they are more for fun and learning; those are the songs I often hear through the monitor in the early morning hours as Nik begins his day in the quiet solitude of his room.
Nik is beginning to really catch on to the concept of sequencing. Where he used to go ballistic if we didn’t do a desired activity or an expected routine in a certain way, Nik now understands when I say “Diaper first, then toys,” for example. He used to fight me when I changed him because he wanted his toys right then. Now, he generally cooperates —though he certainly has his giddy, rascally, or obstinate moments. He knows that I will keep my word and give him the desired toy after I change him. The down side to this is that I have to break it down into each step; otherwise, he thinks that as soon as the diaper is on his bottom it is time to bounce off the sofa and play. Never mind the fact that his pants may be around his ankles or he’s got nothing else on since we just removed his pajamas!
Nik’s cooperating so much more lately. Whereas he used to launch a toy from his chair during meal time, Nik will now not only turn off the toy but he will then make attempts to get my attention and hand me the toy. Ditto with his socks after he takes them off in his crib; he used to throw them over the side and laugh maniacally. Now, I can stand there and ask him to give me his socks and he does. He is getting better about showers —he hates bathtubs and has finally outgrown his infant tub —about brushing his teeth, getting dressed, and so many things. It’s really quite pleasant most days!
The ability to express hunger seems to have blossomed recently; it is still non-verbal but it is very clear. When Nik is hungry he will start to whine a bit and lift his shirt to expose his belly. If he knows I am watching, he will sometimes start to pluck at his feeding tube and growl a throaty little growl like a hungry little bear. When I ask if he’s hungry, he’ll either growl again or punch himself once in the side of the head. I’m not sure where that one came from —one of the girls he used to go to school with did that so I wonder if he remembers that. We are working on eliminating that little mannerism!
Often, I will ask Nik if he’s ready to eat or if he’s ready for breakfast, lunch, or dinner. He clearly understands the names of the meals because his response to either question is the same —he signs “eat” very emphatically! Sometimes, he will walk over to me and take my hand to make the sign, too. He really looks forward to meals now and I try to give him tastes of all sorts of things.
As I recently wrote about here, goldfish crackers are becoming quite popular with Nik. Of course, with his desire for strong flavors I have to get the pizza, extra cheddar, or buffalo wing flavored ones! I can only give him one at a time or he licks them and tosses them in expectation of receiving another. If he sees me put the rest somewhere, he will lick the one he has, toss it, then very emphatically sign “more.” Demanding little guy!
Today, he finally repeated the unsolicited bite of food —three times! Once was with a goldfish cracker and the other two were with animal crackers. With the latter, he actually bit off a large piece that I had to fish out of his mouth because he got panicky and couldn’t work it forward by himself. But it didn’t’ deter him. He even let me crush up a cracker and give him bites of crumbs of varying sizes directly on his tongue. The kid wants to eat so bad he can, well, taste it!
Since it’s too cold to go to the park, one of the ways Nik and his dad get to spend some time together is by going to the mall. It’s a great place for Nik to be able to do lots of walking while wearing his harness —backpack really, it looks like a puppy. He gets to walk independently while Niksdad gets to keep him close at hand and safe. When Nik gets tired or overwhelmed, he simply sits down wherever he happens to be. After a few times of this, he ends up getting a ride on his daddy’s shoulders. Hey, the kid’s not dumb!
Seriously, though, we have started to really figure out that it is one of Nik’s ways of showing that he is on sensory overload; he begins to stumble a lot, or starts looking up at the ceiling while he walks (and then trips), or he sits. Niksdad used to get so angry because he thought that Nik was just being willful. I figured he was simply tired. Then we started to notice that it happens more at certain times of day and usually coincides with any of the following: no nap, a big morning of PT/OT and play group, the mall is crowded, Nik didn’t’ sleep well the night before. All of these things —either alone or in some combination —really tax Nik’s ability to process his environment.
As soon as we made this connection, so many other things have started to shift into better focus for us. The times when Nik has suddenly stopped playing and just lain on the floor playing with a favored musical toy, his wanting to sit with his books first thing in the morning, his need to bite sometimes —all seem to occur when Nik is either overloaded and needs a break or when he’s still groggy from sleep. In both cases, he can’t handle too much input. Once we realized the connection, I was able to let go of a lot of worry; I used to think that Nik was in danger of regressing when he would send so much time on the floor. Now I realize it’s what he needs to help him regroup.
It’s interesting for me to watch as Nik becomes more self aware and also more socially aware. It is especially evident when we are at his OT/PT sessions. We do those back to back, thirty minutes each session and the therapists work closely together —often observing one another if they don’t have a child they are working with at the time. Nik has been really exhibiting some developmentally appropriate behaviors —flat out tantrums —when he is being asked to do things he would rather not. On one hand, I want to cheer. On the other hand, it shows me a lot about Nik’s obstinate streak as his personality really begins to shine. (He must get that from his father’s side of the family. Heh, heh, heh.)
Nik’s OT, Miss D, is wonderful with it. When he starts to kick, scream, cry, and pour it on, Miss D simply puts Nik on a mat and lets him work it out. Then, she tells him that she knows he understands her and she’s sorry he doesn’t want to do “X” but he needs to do “X” anyway. It’s always in a loving and respectful way; it’s never about control but is very much about helping Nik to understand that he doesn’t always get his way. And she’s usually giving him some sort of deep pressure or brushing as she’s telling him that, too.
We’ve talked about the importance of presuming competence and Nik’s ability to understand while also honoring his boundaries and sensory limitations. I feel like, between the two of us, we have a pretty clear sense of when Nik is being a typical toddler and when he’s truly reached his limits of tolerance. So we are now starting to build in some behavioral elements to his OT sessions. It’s slightly daunting for me but exciting at the same time; it’s a place that, just four months ago, I wasn’t sure we would get to. The truly wonderful thing about it all is watching how motivated by positive interactions Nik has become; he really responds well to Miss D’s warmth and love.
Nik’s been very responsive lately to all sorts of affection and attention. Nearly overnight it seems my little loner has become interested in playing with Mommy and Daddy nearly every chance he gets. It is both gratifying and annoying all at once! Yes, I know, be careful what you wish for, right? There are days when I get almost nothing done because I am playing games with Nik —sorting shapes and colors , spinning him around in his giant green bucket, tickling, making funny faces and noises which he is starting to mimic. And yet, oddly enough, I don’t really mind it. I know the time will pass so quickly and I don’t want to miss a thing. We missed so much together in Nik’s early life that I don’t mind trying to make up for lost time with him —even if it sometimes feels like we’re trying to make it all up in one afternoon’s worth of play.
All of this sensory awareness and growth is really spilling over everywhere. Nik is suddenly very interested in the world around him. From our two cats he’s recently discovered —who have been living with us for Nik’s entire life and would be just as happy if he continued to ignore them —to the snow falling outside the window yesterday morning which Nik was watching through the glass with great excitement and curiosity; it’s as if a whole new world has just cracked wide open for Nik to discover and explore. He’s unnervingly fearless when it comes to climbing, sliding, touching, or even tasting. He goes through his waking hours at warp speed and comes crashing down to sleep mere moments after his head touches the crib.
In fact, Nik has been sleeping better lately, too. We’ve finally debugged the whole bedwetting thing —for now—by using sleepers with the zippers in the back (cut off the feet and turn them around), diapers with the tabs done in the back, and vinyl training pants over the diaper. I’m sure it’s just a matter of time before Nik figures out how to circumvent that one, too. Seems we’re always looking for that better mousetrap…
Meanwhile (and I hesitate to jinx it by actually saying it), Nik’s pain cycle seems to be in remission or, at the very least, at a temporary lull. Dare I say, possibly gone —at least for the past five days and nights? When it hits, there is no question that there is some sort of pain response going on. But we’ve been trying a few non-pharmaceutical things that seem to be making a big difference. These things include eliminating the possibilities that Nik is hungry, cold, tired, lonely or bored. Sounds trite, no? But really, if a kid doesn’t talk and needs to get someone’s attention what better way to get it than screaming and slamming his head against the floor?
Now, I am absolutely not saying I think it is all behavioral; I do not. There unequivocally is some pain being triggered —by what we have yet to determine. However, in eliminating all of these other factors when and where we have been able to, the episodes come into clearer focus.
One of the things we started to wonder about —in the absence of any sort of endocrine testing —is whether Nik has been having some bouts of hypoglycemia. Where he’s completely tube fed and that stuff doesn’t really stay with you a long time, well, it may be possible that he was getting headaches, irritability, and nocturnal wakefulness from it. As we’ve increased his caloric intake some and made sure to give him some small snacks between his bigger meals, we have noticed a marked shift.
Still no answers —but more questions to investigate. That’s not necessarily a bad thing; we will raise the issue with Dr. Mary soon.
So, there you have it —in a very large nut shell.
A whole new world
Don’t you dare close your eyes
A hundred thousand things to see
Hold your breath – it gets better
I’m like a shooting star
I’ve come so far
I can’t go back to where I used to be
A whole new world
Every turn a surprise
With new horizons to pursue
Every moment red-letter
I’ll chase them anywhere
There’s time to spare
Let me share this whole new world with you
A whole new world
That’s where we’ll be
A thrilling chase
A wondrous place
For you and me
~ A Whole New World (Tim Rice/Alan Menken)
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