Nisarga

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  • Nisarga exploring the Mumbai international airport

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  • Living with my son’s Cerebral Palsy

    The last day since that tentative diagnosis of Cerebral Palsy has been surreal. In many ways, nothing has changed. While my husband was very resistant to the idea of a handicapped child, I had long reconciled myself to Nisarga never being “normal” – whatever that is. For me, Nisarga is normal. He is my only child. I have no idea of how else it could be.

    I had expected the diagnosis of Cerebral Palsy for over two years now, since all my efforts to learn the Feldenkrais method to help Nisarga kept coming to ideas used for CP patients to be most useful for us as well. Not to mention that the low tonus in the trunk and curled hands were something I saw daily in my son.

    So, in a way, nothing should have changed really, beyond reconciling to a new and hectic way of life. Yet today feels different.

    He is eating well, sleeping well. I did new movements with him, he was able to push himself back in his walker for the first time today. It is almost as if the diagnosis released us from some kind of limbo we were in. As if I was unconsciously treating Nisarga’s condition as a temporary thing and postponing inconvenient things till he was better. And somehow, realizing that this was it was also a call for action to start living NOW.

    Don’t know if that makes sense, because we are most certainly happy on a daily basis, but today was …. different.

    I feel in me a resolve to not let Nisarga’s increasing weight prevent us from doing things and am actually planning on taking him out on bicycle rides with me. I have been wanting to visit local villages and interview villagers as a part of my interest in grassroots blogging for a long time, which I kept postponing because there was no one to babysit the child and so on. And bam. All of a sudden, today I feel I can take him along with me and we can have fun visiting places and seeing people and learning about them.

    Instant freedom.

    No idea what this mood is, or how long it lasts, but I hope it lasts forever.

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  • On the train

    Nisarga. Had an exciting day. Yesterday. Raja took him visiting friends and family who have Ganesh idols in their homes. I joined them in the evening at Raka’s uncle’s place in Malad. He makes his idol at home, from clay. This year he had painted it too.

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    Nisarga was all agog, watching proceedings with wide eyed fascination. This was exciting stuff. Slept like a log and woke up at 5 am, still wired. And now here we are. On a train to town, the Mecca or special needs kids specialists. Lost track of hoe many times we have done this chasing new leads to no avail. So far only my ad hoc Feldenkrais lessons seem to have shown any result. That too is quite modest, to pit it mildly. Hope this time turns out better. We desperately need a breakthrough. The doctor’s visits have started feeling no different from fasting all day on a mountaintop and sacrificing chickens. Nisarga’s first sleepover went well. Here’s to hoping today is. Great too.

  • Walk in the stormy breeze

    I had taken Nisarga out on a longer walk yesterday evening. He can be really tough to carry for long periods, so I took him riding piggyback, with a dupatta to hold him like a sling. This is very easy to carry and I did fairly good time with it. The weather was perfect pre-monsoon breezy weather. Nisarga was thrilled to find a cool breeze after so many days of languishing in the heat.

    So we went further ahead. Wandered around. Found spots with better breeze to stand at. Looked at cows, dogs, buffaloes, shops…. Nisarga had kept a constant stream of excited “baa be baa baa” and didn’t want to come home at all.

    So we drank some juice. He can’t drink well from the glass mugs the chap uses, so he got sticky. I got sticky and then it was really time to get home and clean up šŸ˜€

    Small joys. Today.

  • Update on Nisarga’s health

    To make a long story short, much has happened since I used to write here regularly (and I think I should update regularly for reasons more than memories – to record changed in health).

    Nisarga had shown no real improvement in his physical development since we started treatment. He was on increasing doses of medicine without a real diagnosis and his body was actually stiffer than it was before treatment. Doctors considered this to be a regression. I was not so sure. His legs were straight and stiff and turned inwards till the top of his feet touched each other. He had developed extreme aversions to holding anything or putting weight on his feet. No way this was better than before we started treatment, regardless of how good the doctors were.

    I had quit the physiotherapy already because of no results, and about a month back, I tapered off his medicines till he is now completely free of any treatment prescribed by doctors. This has actually helped him improve. In the last month, he is sitting up much better, he is holding objects in his hand more. He has learned to put a spoon into a bowl, interacts more, increased babbling.

    Some of it seems directly related with stopping the medications – the reduced stiffness, for example. Other things are what we achieved through the Feldenkrais method. It is the only thing that hasn’t failed us yet.

    So currently, we are only working daily with new ideas from the Feldenkrais method and eating well and loving a lot. Each day seems to open new abilities than the one before. It is tough to say when he will stand and walk, but whatever is happening daily is building on the previous day – consistently for a month now. First time I’m feeling we are on some kind of a track toward growth.

    Considering that I am learning the Feldenkrais method completely by myself, I’m going to try and update on the blog on and off as a kind of working journal.

     

    In other news, I was able to help two other people – a child with a hand with very limited movement and an adult with pain. If my learning continues, I hope to be able to offer help to other parents who want to help special needs children expand their physical abilities. I think I am developing some amount of reliability with my skill. This could change lives if I do it seriously.

  • The birth of a girl

    A doctor from Pune has stopped charging for the deliveries of girls or treatments. I think it is a brilliant stand to take.

    The reason for it is sad though. I was reminded of the time when I was in the maternity home for the birth of my son. Two girls were born (and other boys too) and they remained in my mind for a long time because of the difference in how they were received by their families.

    http://twitter.com/aparna639/status/293837367553454080

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    https://twitter.com/awidge/status/293844800149528578

    https://twitter.com/TrianguluM33/status/293863910019317762

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  • Nisarga’s Bera Test

    So it was Nisargaā€™s BERA test today. It was scheduled for 2pm and we were prepared as instructed.

    • Wake him up early ā€“ check
    • Get doctorā€™s letter that he doesnā€™t have cough, cold or fever ā€“ 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 ā€“ an hour before scheduled test ā€“ check
    • Arrive on time ā€“ 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 Nanavatiā€™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 knowā€¦

     

    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 didnā€™t like the taste (I didnā€™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 donā€™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 donā€™t exactly associate messy clothes with a baby on fasting and sleep medicine. I hadnā€™t imagined Iā€™d need them at the beginning of the adventureĀ :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 classroomā€¦ and I was biting my nails hoping that my extremely sound alert son who also hadnā€™t had the proper sleeping dose didnā€™t wake up. That would be the mess to cap all messes ā€“ 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 donā€™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 didnā€™t understand. They changed a few settings. There was no change in the view ā€“ 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 weā€™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 couldnā€™t find her, so juggled cranky baby, purse, etc and figured out payment. Called momā€™s phone. Dad picked it up at home. She hadnā€™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.

  • Nisargaā€™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 justā€¦ regressed.
    • Low body tone ā€“ 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 hadnā€™t been more proactive. Obviously she didnā€™t remember what she had said. Changed pediatricians, pursued more doctors.
    • N started physio. Did for 6 months. No milestone achieved. Stopped. He didnā€™t like it, and it wasnā€™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 wasnā€™t so sure about, but am planning to get done now.
    • Meanwhile, he seems to be developing tactile aversions. Doesnā€™t raise himself on hands anymore, doesnā€™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
    • SomeĀ 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 ā€“ 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 didnā€™t do well with physiotherapy. Pretty much the only thing he has responded to so far.

    Doctors so far: Pediatrician, family doctor, pediatric specialist (donā€™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 šŸ˜€

    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 šŸ˜€