Archive for the ‘development’ Category

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.

Read Full Post »

One foot in front of the other
One foot back to counter it
Days like these you’ve got to find it in some other way
It’s all or nothing baby

Avalanche, start inside of me
Avalanche, down through the trees
Avalanche, start inside of me
Avalanche, hell down through the trees

“Avalanche” by Matthew Good

I read an email from Susan at The Family Room who didn’t tell us she was celebrating a birthday this week —earlier this evening and was all set to reply when Nik started howling like he hasn’t done in a couple of weeks. Had he not been in his chair with the pump running it definitely would have been one of those drop to the floor, head slamming episodes. It lasted roughly 40 minutes. Off and on , waves of pain and tears and head hitting coming one on top fo the other. Spent from the effort, Nik has been passed out cold in his crib for nearly two hours now.

Poor Nik was scrunching up his eyes and flicking his right ear and screaming, punching his face and crying and he STILL kept trying to hold my hands to do “If you’re happy and you know it!” It broke my heart. I guess he wanted to do the song/clapping because it’s his favorite thing to do and it makes him feel good. The juxtaposition of the clapping and the teary, scrunched up face…it was all I could do not to cry in front of him.

I thought I was hanging in just fine lately until this happened. We’ve managed to string a few good days together in a row —the nights, not so successful yet. You know, seeing how much it takes out of him and then how far back it sets him when it goes on and on…this is what makes me worry about the future. How can he make the continual progress if he keeps getting dragged down by the cycle of pain and recovery? It’s like we take a giant leap forward and then go toppling off the mountain peak. The falling is the hardest; the initial ascent is rough too —until we find our rhythm again and can catch our breath for just a little bit. It feels like we keep gaining momentum and then we hit a patch of ice and go tumbling down again.

Not the behavior or the skills that Nik is learning and mastering. It’s his health that takes the hit and then he seems to have a fairly significant regression or stagnation. It comes and goes in cycles and seems to take so much out of him. When we’re on an upswing it’s fast-moving and exciting. When the squalls hit, it’s as if an avalanche tumbles us, leaving us buried us for a while. We dig our way to the top and begin all over again. When we are in the trough of that cycle I’m not sure I can see the forest for the trees.

There’s been no real movement on the medical front in so far as finding any answers or any greater comfort for Nik; our appointment with Dr. House’s team isn’t for another three weeks. Meanwhile, we’ve got some other things coming up on the horizon. There’s a multidisciplinary evaluation next week which I am really looking forward to. It’s done by a team of therapists who work with the Developmental Pediatrician whom we see twice a year. They are wonderful people and they really like Nik a lot. More importantly, they haven’t seen him since before we pulled him out of school; I am eager to see what kind of progress they think he has made.

Equally important will be the recommendations they make for Nik’s therapies. I will not be surprised if they recommend an increase in all areas and hope they can help me make the case with Medicaid to increase services. Over the summer, Medicaid had authorized two sessions of each discipline per week instead of the one they cut back to in October (after we pulled Nik from school). Not that I want to increase the number of appointments we have, really, but they did make a huge difference.

After the team evaluation there’s Nik’s four year old check up (!!!) followed by another sedated hearing test (ABR). We had to reschedule the appointment with new neurologist until the end of the month so we had enough time to gather all the necessary records to send in advance. We will also get to see the cardiologist and the pulmonologist this month, too. That’s in between seeing the orthotist to adjust Nik’s ankle-foot orthotics and seeing the Rehab Engineer to adjust the seat and foot plates on Nik’s chair…and to possibly order a special bed for Nik. Oh, and I think there’s Christmas in there somewhere, too!

Whew, putting all that in writing makes me grateful that I have started to ask for help.

In another health update —mine— I am finally getting the coughing crud mostly under control. It turns out I contracted a staph infection —NOT MRSA — on the heels of a plain old upper respiratory infection and it turned into tracheitis. Not highly common in adults —we usually get bronchitis then pneumonia — it is basically croup. Well, you know, I like to think of myself as a kid at heart! Before I went to the doctor this week and got some antibiotics and cough syrup with codeine (that’s my excuse for my rambling writings this week!), it felt like a mule team had been tap dancing on the base of my throat and I was coughing so much, especially at night that I was hoarse and experiencing some embarrassing hygiene situations if I coughed too hard (don’t make me spell it out, people!). It’s still not so great at night but that may simply be aggravated by Nik’s renewed nocturnal waking this week. Still, I feel much better and managed to actually go work out this morning. I had to reintroduce myself to my trainer it’s been so long!

So, like I said in my previous post — you know the antithesis to this one? —it’s been a very full week.


Read Full Post »

Look out! Look out!
They’re walking around the bed
On their head
Clippety cloppety
Arrayed in braid
Pink elephants on parade

“Pink Elephants On Parade,” from Dumbo

It feels like there’s a huge pink elephant sitting in the middle of my cyber living room and I cannot get past it to write anything else until I deal with it. Of course, no one else can see this elephant because it is really in my mind. But since blogging seems to help me work out some of these things, well, you lucky readers will get to join me in my sorting it out. Grab your hankies, this feels like an emotional journey of epic proportions today.

Since Nik was born, this has always been a very difficult time of year for me. I know that it should be filled with joy and hope, faith and miracles, and all that sort of stuff. But for me, try as I might to let it go, it still carries the essence of anxiety. The glimmers of impending catastrophe that gnaw through my veneer of calm, cool collectedness.

We knew just before Thanksgiving that there was something “not quite right” with my pregnancy. I spent the two nights before Thanksgiving at the hospital getting steroid shots and being monitored for hours before they would let me go home. My sister’s in-laws —who always welcomed me with open arms to every family gathering since my own family was 3000 miles away —pampered me and waited on me hand and foot that year. Nik was born via emergency C section the following Tuesday afternoon following a scary non-stress test (you gotta love the oxymoron name of that one, huh?!). My husband was somewhere under the San Francisco Bay —on his way to a conference in the same town where I sat alone and terrified in a hospital labor and delivery ward waiting to find out whether our child would make it long enough to be delivered.

Nik was in rough shape with no amniotic fluid to cushion him, the umbilical cord was wrapped a couple of times around his tiny fragile neck, and he was in a breech presentation. Try as they might, the OB and perinatologist couldn’t get Nik to respond to any stimuli. His body was shutting down and his heartbeat was irregular. Time was slipping away and attempting to take my child with it.
Niksdad made it with some few minutes to spare. Nik followed soon after.

I don’t’ remember much of the delivery, except the feeling of my insides being stuffed back in before they stitched me up. Niksdad had left my side to be with Nik. He was the only one of us who saw our son’s face unencumbered by breathing apparatus for weeks. Niksdad’s strongest memory of the moments after the delivery is of touching Nik’s hand and feeling Nik’s miniature grip around the tip of his index finger. “I’m here, Daddy. Don’t go away.”

Yet here we are four years later with our strapping boy. He has so many challenges and he fights like a hero every single day. I know I should be reveling in that spirit. And most days I do but, for some reason, these days approaching Nik’s birthday are always a roller coaster of emotions for me —and for Niksdad though he doesn’t show it quite as obviously as I do. There never seems to be an end in sight, a soft place to land to catch our collective breath.

I am sure some of this feels more intense this year because of the episodic pain that Nik has been having and our anxiety about finding a cause —and putting an end to Nik’s pain. Then, too, there is the fear and uncertainty of what lies ahead for Nik in terms of his overall development. We refuse to accept that Nik will not progress beyond where he is now in terms of his ability to communicate his wants and needs. With each passing day I see Nik become so much more engaged in his environment, so much more interested in socializing with familiar people like his grandparents and his therapists. Yet we also see so many times where Nik is simply not present at all; he has retreated into a place where we cannot reach him. There seems to be no middle ground, no place where we can see a continuum of progress unfolding.

We feel lost as to what to do for Nik. We pulled him out of school because we knew it was too overwhelming for him. Yet he needs something more than I am able to give him by myself. There is such a dearth of resources in our state unless your child is in the school system. It feels so damnably unfair that I have to put my child in a situation that I know is not good for him in order to gain access to certain services. And it breaks my heart that our financial situation is what it is right now and that we are not in a position to be able to pour dollars into additional therapy for Nik; he responds so well when he gets it.

Maybe that is the emotional parallel that I am feeling right now —the uncertainty, the fear of whether my child will be alright, and the worry that I am not up to the task. It definitely feels the same as it did four years ago; that’s a feeling I haven’t had for a very, very long time. I know that I cannot see into the future and I’m not certain I really would want to know anyway. But I seem to have lost my sense of being grounded recently and I don’t know what to do to get it back.

I need guidance, practical guidance, to find resources I can use to help my child. Things that I can do right here, right now —at home —that aren’t going to cost me an arm and a leg. Things that will give Nik some good sensory input and help him regulate himself enough to stay present more than spurts and moments in a day so he can learn the things he needs to learn. To communicate when he’s had enough and needs a break, when he’s hungry, when he’s bored and wants my company —and so much more.

Read Full Post »

Out of the depths come strange and wonderful blessings. This I believe. Out of my dark time (which I shared yesterday) I am receiving support and input from “strangers.” I put it in quotes because you are only strangers since we have not met face to face. I appreciate the support, the love, the compassionate understanding, and the very concrete suggestions for solutions.

Today, my heart is heavy still —though not as heavy as my eyelids after our worst night yet last night —but it is full with the gift of human kindness. In the hours between dusk and dawn, those long hours of waiting for Nik to sleep, I managed to think about some avenues toward solutions and support. I also managed to read an entire novel.

Patricia Wood’s Lottery is the story of a young man with cognitive challenges who manages to win a twelve million dollar lottery. The tale is rich and deftly woven —told from the point of view of Perry, the delightfully grounded, big hearted and oft times gullible protagonist. On the surface, it is a tale of his learning to cope with the sudden wealth of new found “friends” and greedy relatives. But it goes so much deeper than any of that. Lottery tells a tale of profound and lasting love, wisdom and accomplishment beyond the expectations of others, and the struggle in each of us to have what we want most.

It is a beautiful and poignant tale. If you haven’t already read it, do yourself a favor and pick up a copy. It will leave you with a smile on your face and lightness in your heart.

As I mentioned recently, Nik has been making some significant progress in the area of fine motor and communication skills. I won’t post any photo evidence but I will tell you that at 2:45 this morning (or is that 3:45? My body thinks the latter!), Nik was still having trouble going back to sleep. He awoke at midnight with a screaming, writhing, head banging frenzy —jabbing at his jaw and face and trying to bite the crib slats. After Niksdad and I managed to help him through it, he played happily with a toy in his crib. I usually let him do this and he falls back to sleep with ease. Sometimes it can take upwards of an hour for him to settle.

Last night it took him a full two hours. Just as I was settling in to sleep, confident that Nik would soon be on his way to Dreamland, I heard the whimpers and soft thump of Nik’s head rocking against the crib —his self-soothing rock versus the agitated pounding of a child in pain or distress. I decided to wait it out thinking he would settle in a short while. 45 minutes later he was in full crying mode and calling “Mamamamama.” I went to soothe him yet again and cajole him into sleep.

Imagine my surprise to find a scantily clad little boy standing in his crib —the zipper to his sleeper completely undone and his diaper beside him in the crib. Don’t ask me how but he somehow managed to wet the bed without wetting himself or his pajamas! Now that’s talent! As I reached to take the diaper, Nik looked right at me, put his arms in the air and said “Up! Up!” His inflection makes it sound like a little puppy barking and it’s awful darned cute. Yet another moment I didn’t know if I should laugh or cry.

I guess we learn to take the progress whenever it comes, however awkward or inconveniently timed, right?

Blessings, indeed.

Read Full Post »

Spontaneous and unbidden
Autumn colors in slashes
Decorate the lion’s face
Majestic in simplicity
It is satisfying
Menagerie corralled in a plastic cup
The smooth feel of beast
Against tongue repeated
Game poached from another’s catch
Is more gratifying

Chasing bubbles
The hunter toddles off
In search of new prey
Laughter on the wind
A new season is upon us
For those who may not be into poetry interpretation, what I’m trying to say is we had a wonderful day today. OT and PT followed by play group. The theme at group today was “wild animals.” Nik was amazing. Focused, interactive, observant. He played well along side one boy in particular; he even shared (well, sort of) a toy.

He colored without prompting for the first time —ever! I cried, I honestly cried, I was so proud of him. He was full of such joy and laughter today. He kept kissing his little lion face after he colored it. Mmmmwah!
At snack time, Nik licked every last one of his animal crackers and did not throw a single one. Major progress. When little Miss P wasn’t looking, he crawled over and stole one of her crackers! Maybe he was flirting? She was the only girl there today and she is a real cutie!
Nik has developed a love of bubbles. He spotted Miss T blowing them from across the room and walked very purposefully over, sat down and comandeered some for himself. He was so charming though that no one seemed to mind.
The speed with which my child changes is dizzying some days.

Read Full Post »