Another breakthrough with ad hoc Feldenkrais Method

Those following this blog for long know that I have been learning the Feldenkrais Method on my own (and not too well) from videos found online and books and training videos purchased on the internet. Basically, this being such an experiential knowledge, simply watching or words are not really “enough”, but in the absence of a practitioner within reach, and with my belief in the Method, I am doing what I can.

So, after a long plateau, during which, I lost motivation, etc. I ended up taking a break. Then I began again a few days ago. The first day or so was… okay… nothing really happened, but three days ago, something suddenly clicked for Nisarga with how he uses his back (or rather how he didn’t use his back, but could). That session exploded into possibilities.

Difficult to put into words, but the end result is that Nisarga is now much more happy about holding and banging toys, which he had lost when he regressed. He has also started applying his knee to the floor to help his creeping. He requires lesser assistance in sitting up, and is able to maintain his sitting much better than before. His back is more relaxed and the curve in his spine doesn’t show as much.

I suppose all this would have happened much earlier in the hands of a skilled practitioner, since for me it is an awkward process of remembering movement possibilities I had noted in videos, seeing how any of them might fit what we are doing, innovating based on them, being sensitive to Nisarga’s body and mind… many things at once… I am not skilled enough yet for it all to just instinctively happen, as it does for those with more experience, but I guess it is far superior to not having known about the method at all.

He just figured out that his back could do more than he was using it for, and it kind of flowed from there. Very optimistic. Watching videos and reading a lot again, so that I can use this breakthrough and we can figure out more ways the body has potential…

This is also good on another level, because I was getting a lot of flak for discontinuing his Physiotherapy on my own initiative, because it wasn’t helping and he seemed to be getting stiffer from all the demands of applying strength to achieve something that was basically movement. It was also making his scoliosis more pronounced (not that any of the doctors noticed that or agreed when I pointed it out until the recent doctor from Vile Parle), which I found worrying. The doctor had prescribed braces, but to me it made more sense to get rid of the tenseness than to prevent it from showing as a distortion.

In any case, with over 6 months of physio, he hadn’t really achieved any particular milestone – he still wasn’t sitting or crawling, creeping erratically… and any progress from one session was not lasting unless repeated constantly. That isn’t learning. But to me, as a mother with a “non-performing” child, it had become about defending a decision made with considerable thinking, observing and soul searching in the face of those who insisted on the proper procedure being followed, recommended training being given, etc.

*Sigh* it always seems to be a fight between responsive choices and choices deemed right by the world.

Anyway, he is creeping far more fluidly than the physiotherapy allowed him, his scoliosis is relaxing again, and I can SHOW the difference to skeptics – which definitely helps.

Bhaubeej 2011

So, Bhaubeej, or Bhaidooj, as the Hindi people call it was yesterday, and Nisarga had a blast.

Actually his day hadn’t been so great since he had been constipated again after quite a while of good stomach, so he was fussy. But all that changed when he reached there. Normally the boy who yells and forces people to pay attention to him instead of talking with each other was delighted to be at the center of everyone’s attention.

Reminded me of what another aunt said. “In a family gathering, the babies thrive in the middle of the room” Absolutely true for this guy at least. Not much to say – the pics will say it all (including a brand new picture for his profile).

We had a pretty good time, actually. He played a lot, we talked a lot, his recent development into sitting more surely got a lot of approving noises… more on that later.

The food was good. Nisarga ate first and slept on time, so we ate stress free… like clockwork to the point of him waking up just as things got boring and wanting to poop (which meant we headed home while others talked themselves down to normalcy) just the way his dad and mom tend to do, so perhaps it is hereditary

Diwali visit to grandparents

We went to Virar to meet my in-laws over lunch at the temple. My father-in-law is too old to travel much and hadn’t met Nisarga in months, and Diwali was a time when they anyway want us to come and pay our respects at the temple. (no, it doesn’t matter that I am atheist – apparently god doesn’t discriminate)

Anyway, it was somewhat a disaster in terms of crowded trains, heat really sucking the life out of us all, particularly Nisarga who got really cranky. A hurried lunch and hassled afternoon. Things got better after we all napped for a while in the afternoon.

So a brief time before we left was what the doting grandparents really got with Nisarga, and we wrung every last bit of attention out of it. Some of the pictures tell the story.

A day for heading out

So, Nisarga has discovered that there is a whole new exciting world out there. And he wants to go out. out. out. All. The. Time.

Bring him back from a walk and he turns right back to the door.

To summarize since he woke up at 8:15am today (and it is 9:30am now)….

Woke up, smiled, pointed to the door. So I took him there, we rang the door bell a few times, rode the lift to the ground floor and back.
He wanted to go out. I took him along to buy milk.
He wanted to go out. We rode the lift down, went to the gate of the building, watched cars drive past.
He wanted to go out. We went and said “Hi” to the neighbour
He wanted to go out. By now, his grandmother was free. He is taking her out just now as I type.

This boy definitely inherits both genes and impatience from both parents. God save us :p

Tests done, nothing clearer

So we had been asked to do four tests to help understand what is happening to Nisarga. Did all four.

Eye Opinion: Eyes fine
BERA: normal.
Metabolic screening: amino acids (I think) found in urine, but nothing major.
Karyotype tests: No numerical or structural abnormalities.

Earlier MRI was normal.

He has some problems with constipation since we have moved to Vile Parle, because he doesn’t move around as much with my parents constantly picking him up. I keep reminding them to put him down, but I suppose, that is grandparents… anyway, the doctor prescribed some ayurvedic medicines and recommended increasing fiber in his diet to help him pass stools more easily.

Pretty much what I knew, by now… as a mother, I suppose you end up picking these things up automatically… but it was good for my father to hear, that I wasn’t being a neglectful mother by putting Nisarga on the floor or asking them to put him on the floor and let him explore.

Now what? We met doctor S.M. Vaidya, who is supposed to be one of the good guys in Vile Parle. He thinks we should now schedule an appointment with his pediatric neurologist Dr. Anaita Hegde, as planned. He says while all tests may be normal, even their being normal is a clue to someone looking at the whole picture, and she is an experienced doctor.

So I suppose that is what comes next.

Nisarga’s Bera Test

So it was Nisarga’s BERA test today. It was scheduled for 2pm and we were prepared as instructed.

Wake him up early – check
Get doctor’s letter that he doesn’t have cough, cold or fever – check. We took him today itself so that it would tire him out some and make him more inclined to sleep later.
Last feed at 1pm – an hour before scheduled test – check
Arrive on time – check

The audiology department at Nanavati is built in a building which is all basement and flat terrace at ground level on top. Some three or so floors underground. I found myself wondering what they did when Mumbai flooded. Anyway, down we went.

We seemed to be the only people there at Nanavati’s audiology department on time other than a receptionist. So I entertained myself looking around and I found this poster about symptoms of hearing problems. The fifth point seemed to me one that would unnecessarily make a lot of people take tests, but what do I know…

Anyway, we waited, and patience paid off and all that. The audiology assistant arrived and some form filling and chitchat later, I was handed a tiny cup of medicine to give Nisarga so that he would sleep.

Nisarga is very easy with medicines. No force, just requests work very well. So I gave it to him in sips. He gagged on first taste. Apparently he didn’t like the taste (I didn’t like the smell either), but sweetheart that he is, he took most of it anyway, and which point he really gagged and vomitted.

And I don’t just mean the medicine, but his earlier meal or what was left of it too. Big, big mess.

I was in stunned paralysis. Never in his short life had he puked like this, and I had no freaking clue what to do now, seeing as the cotton dupatta I had brought along as a useful multipurpose resource exhausted its potential almost immediately.

I took the dripping (yes, yuck) kiddo to a bathroom on the floor below, and stripped him and did what I could to tidy him up, lugged him back to my mom who had come along, and returned below to tidy myself and rinse out his clothes and cotton cloth as best I could, since I had not taken along a change of clothes. I ALWAYS take along a change of clothes, but you don’t exactly associate messy clothes with a baby on fasting and sleep medicine. I hadn’t imagined I’d need them at the beginning of the adventure

So anyway, we had a new problem. No one had an idea of how much medicine had done its job, and how much more should be given, and if he would keep it down at all. Finally, I tried to get him to sleep the regular way and he did sleep. I put him verrrry carefully on the bed, and the doctor came in for the test. To my surprise, two women in burkhas, I had imagined were patients came in too. They were apparently her assistants or students or something. My first experience of a burkha clad doctor!

Anyway, the doctor was a real soft and silent worker, and within no time, she had got some thingies attached behind both ears, his forehead, and crown, inserted two earbud-like things in his ears, and the test was started.

This has to be the most boring test ever, because there was absolutely no action other than various waves showing up in the software on the computer. The doctor whispered some instructions to the two burkha clad women, and exited, and they kind of took over, though it was mostly a lot of squiggly line watching.

Then, they started whispering among themselves, slowly graduating to talk. I suppose doctors are like any other students in any other classroom… and I was biting my nails hoping that my extremely sound alert son who also hadn’t had the proper sleeping dose didn’t wake up. That would be the mess to cap all messes – to wake up with strange strings attached, two women covered strangely next to him and no familiar face. I mean, I have nothing against burkha clad women, but I don’t think Nisarga has met any before. I had no clue how he would allow them to calm him in a strange surrounding after already having puked, etc. Fingers crossed, a few hints to keep volume low, finally an outright request and explaining the situation to them, seemed to work for a while.

Nisarga was sleeping well now, though he had frowned and made a few sounds when their voices had got loud earlier. The doctor came in to check a few times and asked them to do some things, which I didn’t understand. They changed a few settings. There was no change in the view – squiggly lines.

I hopped outside to ask my mother to stand up in the sun so that the cotton cloth at least would dry enough to wrap him and take him home when done, or we’d be parading him in a diaper. She wanted to visit the rest room. She is also a little slow and physically stiff, so it took a while, and by the time we were almost figured out, I got a call that Nisarga had woken up. Pointed stairs to mom and told her to keep going up till sunlight and ran back to Nisarga.

He was totally outraged. Furious, scared. Apparently, the test done, they had started talking in normal voices thinking that it was fine. He woke up among strange looking strangers. Took me a while to quiet him down.

Went to reception. Was told to go to OPD in next building to pay and return with receipt. Took the diaper clad baby hoping to hand him over to mom, but couldn’t find her, so juggled cranky baby, purse, etc and figured out payment. Called mom’s phone. Dad picked it up at home. She hadn’t taken it along. Dad started ranting at me and told me to abandon her and return home. I hung up on him, resumed search. Found mom. Handed baby, completed formalities, etc.

Took baby, covered with that thin cotton dupatta which was only slightly damp. Caught rickshaw. Headed home.

Phew.

Bath Time

Here are two videos from our bath time escapades. Nisarga has always loved the playing in water part of bathing and always hated the washing face part of it.

The fun lies in catching a stream of water or pushing a bobbing toy under. Some of the most enjoyable moments of the day.

Doctor’s visit in Parle

Much has happened since the previous posts. I finally gave up on trying to patch the marriage and have moved back to the father, which isn’t a big improvement, but still as step in the right direction.

So, we needed a pediatrician in Parle, and we went to one this time. And what an ace!!! Nisarga has five tests pending – all of them off beat and not easily found, so most doctors kept pointing us to Jaslok, where their appointment procedure was confusing, and it is an hour’s drive at least, so multiple appointments would be a pain.

In an effort to get what we could done nearby, so that at least the agenda on the day we did go to Jaslok was lesser, I got the opthalmic testing done yesterday. The doctor found nothing of concern, but recommended another test – again at Jaslok.

Today’s doctor was able to provide us options that were literally within fifteen minutes at home, plus definite contact numbers and so on. Very useful.

He also was the first doctor to acknowledge that Nisarga’s spine indeed seems to have a curve. Most doctor’s had shrugged it off as something of less consequence. So I wasn’t being paranoid and his back does have a curve.

Nisarga was his usual engaging self while we waited, and lost patience rapidly once we went in. Luckily, the location of the clinic is very charming and child friendly. Here are some pictures of Nisarga from when we waited.

At the end of the day, we are to do four more tests. The Karyotyping, Metabolic screening, BERA and eye opinion. Pretty much as planned originally. Just confirmed. However, he provided us on information where we can get these done without having to go too far. Also phone numbers from each place for getting appointments. Much improvement over the crazy attempts with Jaslok – very strange that no one in their ENT seemed interested in picking the phone and the one time they did, they sounded like they hadn’t heard of BERA, even though the receptionist had connected me with great confidence.

Earlier, most of the advice had been to go to Jaslok, which had been a big problem for me both in terms of expense as well as managing without assistance with Nisarga. So this is a most welcome visit in terms of making things possible, even though nothing different is known or happening on the medical front because of it. For the information of anyone else who may need it, I’ll share the details as and when we do the tests.

Meeting Dokya

One of our friends from the mountaineering days is Dr. Milind Chitale. We had been planning to take Nisarga and his medical papers to him for a friend’s opinion on his issues and treatment.

Accordingly, finally we took Nisarga today. My father had come along, which was a bit awkward for me, because there were things I wanted to speak with Dokya I was not comfortable with the father knowing.

Luckily, because of the hurry and stress around the leaving to meet him (both my parents are nags and uncaring of quality of process or consideration for people as long as the action is done) Nisarga started crying almost as soon as Dokya was done taking a look at him and his body movements etc. So I suggested that the father take him and head home, while I continue the conversation and return separately.

That was good, because we were able to speak about Nisarga in considerable detail.

He disagreed with Dr Parul’s advice to wait and see what happens, though he agreed in the sense that there was no point doing anything before the test results arrived and stressed that the tests must be done at earliest.

I think I trusted this advice more than anyone else. Maybe because he was also a friend? So it is decided. We need to do opthalmic testing, BERA, Karyotyping, metabolic screening. About the expense, he said it might be better to go to KEM, which is far away, but far cheaper and has good doctors.

He asked for a few days to find out which doctors to meet and when to go. So, that is decided.

I also spoke with him about our break up and my depression and he suggested that psychotherapy might be a good idea, but we could wait and see in the sense of Nisarga being more urgent and how the shift to the parents impacts me.

Left his home with a huge sense of relief. Finally I had a plan of action in hand solidly. Surprising how I had reached such a stage of unsurety that even written test prescriptions were not enough to prod me into action and it took a friend with the knowledge and right to go “do this, then this, then this. Don’t think” to make me feel able of doing exactly what I was supposed to do all through.

A conversation about Nisarga’s health options