Nisarga

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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 :D

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.

Nisarga’s medical history

Been working on this post for a bit. Many people asking exactly what is wrong with Nisarga, so putting it together the best I can.

  • He was fine till he was 3-4 months old. Had just begun turning to side, catching toys, etc when he kind of just… regressed.
  • Low body tone – hypotonia. Just used to lie on his back, not moving.
  • Started developing flattening of head, slightly curved posture (scoliosis?)
  • Turned to side again at 6 months. Turned over at 7 months.
  • Used to bang toys a lot (broke one musical keyboard like that). Used to raise himself on hands. Stopped raising himself on hands.
  • No sitting, no crawling.
  • His pediatrician used to tell us all was fine and some kids were late till he got one year old and she suddenly asked us why we hadn’t been more proactive. Obviously she didn’t remember what she had said. Changed pediatricians, pursued more doctors.
  • N started physio. Did for 6 months. No milestone achieved. Stopped. He didn’t like it, and it wasn’t helping.
  • Got MRI done. Clean. Nothing noteworthy.
  • Met neurologist who prescribed Syndopa, which was a disaster, asked for some expensive tests (karyotyping and metabolic something), which I wasn’t so sure about, but am planning to get done now.
  • Meanwhile, he seems to be developing tactile aversions. Doesn’t raise himself on hands anymore, doesn’t hold objects anymore, or touch hands together.
  • Still not sitting, crawling. Forget standing, walking.
  • Not talking
  • Refuses to use hands for things like waving bye (he can, he has sometimes)

My own observations and stuff (that has so far been not picked up by docs as significant):

  • He seems to be developing scoliosis, which further makes it difficult for him to balance himself.
  • Hypotonia
  • Some spasticity
  • Scissoring (phase, decreased now)
  • Does not arch back properly, making crawling, sitting, everything inefficient

That is pretty much it. I can provide specific info if needed.

Other background:

  • Born 3 weeks early.
  • APGAR 9/10 after 5 min 10/10
  • Birth weight 2350g
  • Labor – Induced, long, uncomplicated
  • Jaundice when young. No specific medication or treatment, took into sunlight. Resolved in days.
  • MRI done. Normal.
  • Currently stopped all treatment for a month on advice of family doctor.

I have done some Feldenkrais work with him, to which he responded well, but stopped as it didn’t do well with physiotherapy. Pretty much the only thing he has responded to so far.

Doctors so far: Pediatrician, family doctor, pediatric specialist (don’t know difference from pediatrician), pediatric neurologist, pediatric physiotherapist.

Consulting and advice from assorted doctors. Nothing surprising from current track.

Drawing with Nisarga

Uh…. no. He didn’t actually draw these, he…. directed them.

He was fussy, so to entertain him, I started telling him about the website design work I was doing. One thing led to another, and we fiddled around with the Harmony script for drawing – an adapted version of which forms the background of this site.

He liked the look of the colors moving around on the page, so we did a lot of that.

I showed him how to write his name, drew him various things like kids playing, mountains, flowers, computer, etc. Things were moving quite fast, so I don’t have a whole load of screenshots, but these are a few, just to show off my son’s choices, and the very marvellous Harmony script by Mr. Doob.

Conversational contexts

Nisarga has really started picking up on overall meanings/tones of conversations. And he’s on my side!!!

Make that he’s on my side in defending his rights. Two incidents.

We were meeting the big physiotheripast – the main woman – Dr. Urmila Kamat. She comes once in a while and meets a lot of people, so invariably the appointment timings get pushed around. Not the end of the world, but Nisarga really has a very low threshold of waiting for appointments. He fidgets, demands to see Mickey mouse, wants to see the road and the cars and generally do something non stop till he tires himself out, or be cranky till he tires himself out. This delays in appointments business is really not a good idea for younger kids (or older… or adults).

So, we went in, and he was already fussy. On top of that, it was an unfamiliar social context from what usually is in that room. he didn’t particularly like it, but bore it with that resigned cooperation that is so characteristic of him once pushed beyond his energy zone. It was fine, and I preempted any fussiness by distracting him, etc.

Till the doctor lit into me for immediately answering him every time he cried. Apparently I should not do it, which is another big argument for me, but I’m used to this dictatorial nonsense, so it goes in one year and out the other. Nisarga was giving her dirty looks, which could have been his mood, but later, as she tried to speak to him, he deliberately looked away at everyone except her. Good for him. There is no reason that he should smile and interact with someone recommending that his distress should be ignored.

The other time happened when my mother-in-law visited recently. With all the candidness of her generation, she declared that there was nothing wrong with him, and that I am not feeding him enough/correctly. I honestly have no answer for that, since I really don’t know what’s wrong. The lines of the doctor’s investigation seem completely wrong to me. So her guess was as good as mine as the doctors. I asked her what she meant.

She described a diet that was way less than what this guy eats, but in her eyes, it was the “routine” that mattered. I feed him when he is hungry. According to her, I should feed him at certain times only and ignore him if he asks at other times. She even offered to take him away with her for a while to get him into a healthy routine. Uh… no, it isn’t as “child stealing” as it sounds. That entire generation seems to be okay with kids being sent out to relatives etc to change habits or break them. And parents being advised to send their kids somewhere to ‘fix’ them. It was an idea, not a kidnapping. That will get him eating healthy!!! Well, Nisarga was taking none of that. He had been solemnly listening to the conversation, but we were both surprised when he broke in at this point making angry sounds at the MIL and clinging to me!!!!! Two minutes later he asked HER for food and when he got it, he wasn’t really hungry. MIL was feeding him. Just ate a couple of bites, but refused to let be put the remaining back in the kitchen. Oh boy, we are growing up, we have opinions and we have no issues with making them known. My boy!!!

Note: Though if he was really smart, he would have known that his grandmother has a lot of this “rules” kind of thinking indoctrinated, but when it comes to action, she fed him as lovingly as I do – totally out of “schedule”. At that point, if I had suggested that he wasn’t really hungry, I’d have gotten blasted for depriving the poor tyke when he was asking for food :D

Its love, and its fear. Both my parents and Raka’s don’t live with us, so they don’t have the reassurance that he is happy and improving slowly but steadily. The longer this is happening, the more “wild ideas” they get – its fear, concern, love. Just saying this, because the incident is written leading to Nisarga’s actions in that one incident. In reality, other than me, his grandmother is the only person I can leave him with without second thought. They adore each other. She takes him for long walks. That explains it all :D

Body movement as it evolves

Just got this update in the email.

As most of you know, I follow Feldenkrais information as a part of my quest to help Nisarga learn and grow naturally. I have been following “The next twenty five years” which is an ambitious film project for documenting the evolution of the work of Moshe Feldenkrais. This is a clip they have released of baby Liv, which conveys so clearly the process of physical learning right from the relaxed and random to the easy accomplishment of the intentional.

Truly, if you have a child, are involved with children, or are lucky enough that the child in you is alive and kicking well, this one is an insight. You can see clearly how the movements build on the learnings from the effort so far and refine them. It also is an insight into how effortless a Feldenkrais movement can be if you stop “doing movements” and get into discovery.

Learning to move

[vimeo http://vimeo.com/13598879]
[vimeo vimeo.com/13598879]

[vimeo 13598879]

Growing up like mom and dad

Okay, so its Nisarga’s eleventh birthday, and we are all grown up and ready to work. Naturally, the very first work we will try on is work we have seen happening around us. So friends, families and well wishers, here I present, Nisarga the mountaineer:

Baby wearing a climbing helmet

Nisarga following in Raka's footsteps

Baby working on computer

Nisarga watching photos on my computer

The first one was taken when Raka was packing for a batch for waterfall rappelling, and Nisarga insisted on playing with him and all the equipment. Raka picked him out of the mess and put him to one side and plonked his helmet on his head and the little guy was deeeelighted. i whipped out the camera, and it became the next toy he wanted :D

The other one is about Nisarga’s increasing interest in the computer. He loves to watch the screen, and tap away at the keys. Mostly I open a word document and set the font to some huge size and bright color and let him bang away, or, like this one, I open a folder of photos so that he can bang at keys and make the photos change. Here are some more:

Baby in mother's lap intent on computer

Nisarga helping me work

Love the little guy.

10 months old today

I haven’t posted in a long time, but I thought today was special. Nisarga is 10 months old today. I did absolutely nothing special, because Nisarga did something I’d like to remember forever as a memory of his 10 month birthday.

I woke up this morning to tiny feet kicking my chest. The guy had turned 180 degrees and was trying to nurse through my shirt :D We did the bed milk thing and when he nodded off, I promptly slept. Oh, but he hadn’t nodded off. He started batting at me and babbling. Desperately hoping for sleep, I clutched him to my chest and rolled over to the other side, depositing him between the husband and me.

Apparently Prince rug-rat knows which of his subjects are functional at what times of the day, because he promptly ignored me and proceeded to do the batting at face and kicking chest routine with Raka, who mumbled baby stuff at him. This delighted the little guy so much that he sarted to laugh out loud, babble and roll all and crawl over the bed. Vibrant. Loving life. Enjoying the attention, and the day was just beginning!

Charmed out of our sleep, the husband and I meekly moved to the edges of his playground watching our miracle not just welcome, but kick the day into action. His delightful mood lasted through the day, with loads of talk and laughter. It was only as he settled for his morning nap that we remembered that he was 10 months old today. Of course! The little guy knew :D

So, in the absence of anything special for you guys to enjoy, I’m doing something I’ve been promising for a long time. I’m uploading some of my favourite photos from the time I’ve been MIA here. Enjoy!

baby and mom - casual moment

Nisarga and I having a good time

mother and baby in toy train

Nisarga and I at the Matheran train station, resigned to the train moving when it will.

infant in baby chair

Nisarga loves his chair, but after I saw what he did with his toys, I scrapped plans for letting him play with food

mother and baby lying in the park

We had a blast playing and talking in the park (and rolling around)

Uncertainties of unschooling

Posting an email response I made on a group I belong to.

“What if things don’t fall into right places and then one day your child will ask, why did you do this to me?”

The way I see this, no matter what I do, I will have done some things well and messed others up. If a child (or anyone for that matter) wants to put blame on me, there will always be ammo. There is no way to predict how things will unfold. I can only act to the best of my ability and in line with my beliefs right now.

That said, I imagine a child who suffers decisions made by others, whose individuality is not nurtured, whose desires are not respected is likely to harbor more resentment from always living to someone else’s tune. So its not really a equal choice problem to school – unschool, since once out of school, there is no reason for the child to suffer from living another’s idea of appropriate. so, in fact, I would be removing many resentment triggers by unschooling.

How will you face it?

By facing it. There are no short cuts. I will need to get buy-ins from many people lovingly involved in his life – be it through stubborn, gentle, persuasive, argument… It is a journey with each person you’d like remaining lovingly involved.

Are you sure what you are doing will work for your kid?

Nope. I am sure that this is the best choice I can make.Hindsight is twenty twenty. Now takes courage in belief.

Why don’t you send her to another good school where they don’t conduct exams?
Why not IB or IG, they are international and fine quality education?

This is really something that needs addressed before committing to unschooling. Its not going to help anyone to jump in the sea and long for a pool. For me, it is basically four things:

  1. Childhood is fun. No point investing over a decade of this precious time working hard to learn things never needed beyond exams.
  2. I would like my child to learn things that will enable him to meet the world as an empowered individual (as opposed to fortified graduate)
  3. I believe many things that are a natural result of syllabus are harmful to the emotional growth of a person. (Just think of an education system that makes kids competitive, collaboration is denounced as cheating, and then corporates spending huge amounts of money to get their genius top-ranking interns able to work functionally as a part of a team)
  4. It feels unnatural for me to be sending my child away from family for long periods, no matter how safe the other environment is. Safety for a child is not about my assessment or some authoritative certification, but the immediate experience of familarity, comfort and attention. I used to breed horses, and never separated colts from their dams till they were of working age. I even tried to work them together as far as possible till I observed them grazing separately and forming their own relationships. I have worked mares in an emergency with foals trailing along. Why would I do any less for my child? I think there is something seriously wrong with a society that forces children to be independent of their parents and expects adult offspring to feel attachment for their parents. It can be conditioned with heavy doses of shoulds and guilt, but to be experienced, where is its foundation in a vulnerable child learning to survive without parents in situations that challenge them most? This child simply doesn’t need parents for their emotional well being. They grow up to spend all kinds of money and effort over their parents, but their idea of a good time wouldn’t include them. I wouldn’t dream of sending my son anywhere out of sight of me or a family member without my son initiating it, or (in an emergency) being okay with it. Simply put, when I’m an old, drooling bed ridden idiot, I’d like my child to care whether I want to go to that wonderful old age home.

I guess my thoughts are rather extreme on this subject, but I believe them completely, so here I am.

6 months old

Some of the best pictures to date.

Today Nisarga turned six months. And what a wonderful day it was! The day went fairly well with a morning of play and the little man just didn’t want his nap today. After his Sadhanamavshi and Manjumavshi visited him, he went off to sleep. He slept for a solid four hours and woke up in the most amazing mood. Here are some pictures.

These pictures are going to be how I remember him years from now.

Playing infant

infant listening

These pictures are pretty much how he spends the days. The nights too…. till he absolutely can’t go on.

This guy doesn’t like to sleep. My son.

Turning from front to back

Finally, Nisarga has turned from his front to his back. He’s done it twice before, but that was more about him pushing with his legs and his bottom sticking in the air. He lost balance and toppled over.

Today, the guy very deliberately raised his arm and kept swinging his body more and more and TURNED over. I put him back on his tummy, and there he went, rolling over again, and again.

I had been worried about him not having any interest at all in rolling over, and when he finally did, he did it effortlessly! I guess he just didn’t need to or something.

Wow. I called Raka over to see, and before he reached, this little wriggler was on his back already, so I put him on his tummy again, and he happily showed off for dad.

Wow.