There’s something talkin’ in the wind
Whispering through the trees
That feeling in my bones again
Just puts me right at ease
It takes me back to all the times
I’ ve been here before
But crossroads, old familiar signs
Tell me there’s something more
(A Change In the Air ~ Clint Black)
There does seem to be the scent of change in the air lately. As I wrote in this poem, it feels like spring is finally coming after a long, dark winter. I don’t just mean this particular season; I mean a winter of the spirit, of the soul.
It feels as though we are on the cusp of some big breakthroughs in many areas with Nik. Since we decided to take him out of school this past autumn (you can read the saga here, here, here, here, here, here, here, and here), he’s made such remarkable progress in all the ways which inspire hope and joy in my heart. No, Nik is not yet potty trained or eating by mouth; he still has a way to go in those particular areas. But he has made such great strides in connecting with and integrating his environment, connecting on a deeper, more intimate level with so many people —and differentiating between us all.
The bonds between both Nik and his dad and Nik and me, have become so strong that we are no longer peripheral to his daily activities —no longer merely the people shuttling him back and forth to appointments, changing him, feeding him, picking up after him; we’ve become central figures —the ones he wants to play with, to dine with, to hang out with. The ones he misses when we are gone from his side for more than an hour or two. The joy in his little face when he hears my voice when I come home from the gym. The gleeful way in which he drops everything and races to the gate when Daddy comes home from school or work; the squeals of delight when he sees his coat and knows he is going “Zoom-Zoom” —off on an adventure with one or both of us. The deep, crinkly-eyed laughter we share as he looks into my eyes when I tickle him or dance with him, or teach him how to flip backward off my lap to do a standing somersault.
The connection goes so deep, the current runs so strong and true that it makes me weepy nearly every time; we’ve waited so, so long for this connection. It feels fresh and new and exciting every day.
Nik has come light years in a few short months in the way he communicates and cooperates, as well. Nik has progressed from completely ignoring our requests such as “Hand me the red square” when we are playing with his shape sorter, for example, to not only complying roughly seventy-five percent of the time but to also no longer simply throwing his toy over the gate when he is finished with it. Now, he will bring the toy to the gate and, if one of us is in view, he will babble or make some sort of noise to get our attention and then hand us the toy.
I realized just yesterday, as I watched him try and fail a few times to get one of the pillows from the sofa over the gate, that Nik’s tolerance for frustration is increasing; he’s developing more of a determination to persevere. He still gets upset when certain things don’t cooperate with him, but —by and large— it seems that he makes so many more attempts at things before he falls apart if he cannot do it. He is more easily calmed down in the aftermath, as well.
If I see he’s very frustrated with something, I’ll let him have a bit of a tantrum over it and then I’ll come into the room and simply say, “What is it, buddy? Can you show Mommy what you want?” Usually, he then engages with me to help him problem solve; I am trying very hard to not simply do things for him any more. Nik has more than proven he is perfectly capable of figuring things out, but sometimes he just needs a little reassurance that he can, in fact, do it. Not terribly different from any other four-year old, I imagine?
I am very excited about getting Nik’s communication devices; I haven’t written much about that because I didn’t have any idea how long it would take or what to expect. We are completing the paper work to order the devices recommended during his AAC evaluation at the end of January. In the meantime, though, I just found out today that the local branch of our statewide assistive technology initiative (DATI) has both devices available for us to borrow for up to two weeks at a time. If no one else is waiting for them, we may be able to renew them for an additional two weeks which should nearly cover the processing time for Nik’s own devices. I’ll tell you more about the devices and how we can use them in another post a little later.
In the aftermath of the EEG fiasco earlier this week, our fabulous new neurologist has made arrangements for Nik to have an ambulatory EEG done locally —this coming Wednesday! We are hoping that the results will give us some more information about Nik’s odd, recurring pains. I truly don’t think they are seizures but it will be good to have the results to rule it out.
Dr. G recently increased one of Nik’s seizure meds —and we’re seeing some positive changes, thus far. The increased dose does tend to make Nik a bit drowsier —though you’d be hard pressed to tell during the day! If you didn’t know Nik and watched him play during the day, you’d think he was a fairly energetic boy; I can see that he is a bit less frenetic and is able to focus on one thing at a time for longer periods. He also takes slightly more quiet breaks and will lay down to play with a toy for a few minutes before he jumps back into the fray.
Where I really see a change is that he is napping again —up to two hours at a clip, if I let him! And it doesn’t seem to interfere with his ability to fall asleep at bedtime. Nik is averaging about ten to eleven hours a night; I wish I could say he is consistently sleeping through the night —but I am hopeful that he will again! The best part though is that both Niksdad and I think we are seeing much less seizure activity since the increase. It’s only been four days so far, but it’s a good sign.
And, of course —as you saw earlier this week— the eating is progressing very well. Now, mind you, we’re nowhere near even being able to count the calories in what Nik is eating and even farther away from thinking about losing the feeding tube. But, the progress Nik has made in the last couple of months is unbelievable. It’s as if he is constantly challenging himself to try something new.
The key, I think, has been in recognizing and honoring his need for autonomy; Nik wants to feed himself —which is right in line with his extremely strong spirit of self-determination! It seems that, as long as Nik has his own utensil —and, lately, his own bowl —and can have some measure of control over eating, he is a willing participant. I might even venture to call him a joyful participant. He still struggles with large quantities of more than a half-teaspoon at a time, or with chunks larger than a grain of rice; he hasn’t quite figured out the whole chewing mechanism but we think he is on the way. Where, a year ago Niksdad and I were running on the faintest vapors of hope that Nik would ever eat by mouth again, we are now both excited and enthusiastic. Mealtimes are wonderful family times again.
Many would say that our life goes at an insane pace —and I suppose they would be right. Between Niksdad’s nursing school, nursing clinicals, and work and Nik’s multitude of therapies, playgroup, and swimming —with the very frequent doctors’ appointments thrown in for good measure— and my renewed attempts to get in regular work outs at the gym and maybe even a date with Niksdad every once in a while, I guess it is rather frenetic. But it feels like the pace of a family finally hitting its stride after so many stumbles and false starts; like we’re actually gaining some ground right now.
And that’s a pleasant change, indeed.