Author: vidyut

  • New beginnings

    New beginnings

    We have now moved to our new home, and Nisarga seems to be thriving. He is eating more, sleeping sooner, sleeping sounder and rising at the crack of dawn all excited.

    Another new beginning is the end of my resistance to massage. After being told that it wouldn’t help him, and after seeing little to no result from it as well, I’d given up on it as one of those things everyone either tells a mother to try or avoid, depending on which end of the orthodox to allopathic spectrum they land.

    Then today, something a new neighbour said, suddenly clicked. He was speaking of trying various exotic oils specifically to help his condition (as opposed to the general “build strength” or “good for baby” suggestions so far). It was a minor departure from the routine suggestions and possibly an accident more than intentionally different, but it got me thinking.

    After Nisarga settled into a very uneasy sleep, I got on the internet and hunted down information.

    And I can’t believe I missed this, but 3 in 4 cerebral palsy patients experience pain from their constant involuntary movements. Astonishingly, I have not actually tried to solve the pain beyond gently pressing his feet when they seem restless. I however seem to have noticed subconsciously that the few times he was given crocin – usually for unrelated reasons, he slept soundly and moved around less in his seep. Obviously, he can’t make painkillers a part of his diet, but surely there can be massage oils for pain that can be in his routine?

    So I hunted down information that mostly led me to herbal and alternative medicine websites and some natural treatment websites including one that claims to treat cerebral palsy (implying cure). In the process, I ran into dozens of names of oils and herbs that would be useful, and made a note.

    Among those on various pages (and for various related reasons ranging from pain relief to relaxation and nerve stimulation), I noted those I had present at home to experiment. I had rosemary, eucalyptus and citronella (I thought it would be the same or substitutable, if not, for lemongrass). On a stray note, most of these seem to be astringent or somewhat mildly irritating to the skin – I wonder if that is a factor in the pain relief – by creating counter sensations or increasing blood flow, etc.

    Taking a few spoons of olive oil, I mixed a few drops each of these, and rubbed a sleeping Nisarga’s legs.

    Normally, touching his legs when he’s sleeping, particularly extensive touching causes him to contract them closer to his body. Not today. He just relaxed into my touch, his breathing suddenly deeper and his whole body went limp in a way that spoke of relief.

    So I rubbed some into my own aching legs, and the ache indeed seems better.

    So now I’m hunting down various other alternative medicines and massage oils to try with Nisarga. Might as well boost this growth spurt and see where it takes us.

    And I am planning to massage him (very lightly) with one or more of these oils twice a day. Less rubbing and more of pain relief and relaxation.

    I’ll update here if there are any noteworthy results.

  • A day of upheaval – the end of this marriage

    A day of upheaval – the end of this marriage

    It has been a day of emotional upheaval in many ways, all of them centered around Nisarga.

    It is no secret that my relationship with my husband has been deteriorating over the years. I have gone to my parent’s home with Nisarga when he was a year old, only to be convinced to return. Then came the turmoil of his delayed milestones and the Cerebral Palsy. Worried sick about not being able to make it on my own while earning from home, enough to care well for Nisarga as well as earn the extra money to make things work, I kept returning from every breakpoint, compromising in that cliche “for the sake of the child”.

    Perhaps the child was the excuse. Perhaps it was my own fear of proving inadequate to care for him, that let me slide to the easy road of the devil I knew. And somewhere, I think Raka too started realizing that he could get away with treating me anyhow, because I would not go away, because having both parents around was undeniably better for a child with an already limited social circle.

    This morning was another breaking point. Raka had gone to Lonavala yesterday, and returning late, had planned to stay with my parents. Only he arrived there drunk. My parents are teetotalers with no acceptance for vices of any sort. Then, changing his mind about staying, he left there again telling them that he was coming home to Virar (about 2 hours). My mother was very disturbed, and called me asking about why Raka was so disturbed and complaining about me, asking me to do more to keep him happy and prevent him getting drunk. This was almost midnight.

    After reassuring her, I turned the phone on silent, as Nisarga is sound sensitive and wakes up if the phone rings, and my mother has a propensity to call without regard for his bed times and she was already justifiably disturbed. She also has a tendency to call up and ask whether anyone traveling has reached safely.

    So I checked with Raka, and found him drinking further. He informed me that he wasn’t coming home, and he would figure out where he would stay as he was in a mood to stay in Vile Parle. An hour later, he called to inform me that he was coming home. I asked him to not ring the bell and wake up Nisarga, but to use his key to get in. He told me he didn’t have the key. I waited for him till 5:15am worried sick about him traveling in the middle of the night badly drunk, and fell asleep half sitting in front of the laptop, only to be woken up by a thunderous noise and a terrified Nisarga crying. It was barely half an hour since i fell asleep, but Raka had arrived, and after I didn’t answer the doorbell, was proceeding to kick the door and yell abuses at me.

    I opened the door to terrified neighbours peeping out of their door behind him, realizing that I probably was too fast asleep to hear the doorbell. It turns out that the doorbell wasn’t ringing. It was switched on, but it had either malfunctioned before, or while he was trying to ring it to wake me up.

    He entered the home screaming abuses and telling me to get lost if I can’t even open the door for him. Unlike the other times he loses his temper with me, this time, he was speaking with Nisarga in an angry, aggressive voice as well, and Nisarga kept breaking into sobs. I simply never had a chance to get a word in, and the rage terrified me. He just thundered on, without even a pause to fit an apology in or pacify him in any manner enough to give Nisarga a breather. Then all talked out, he slept, leaving me with a subdued Nisarga, who for once stayed quietly in the bedroom (normally he heads for the outside room the minute he can escape).

    This is the end of the road. If this isn’t a sign that the state of our relationship continuing is NOT “for the good of the child”, I don’t know what is. It is time to find my guts and move on, “for the good of the child”, because every child deserves a home where he never cringes in fear.

    I have appealed to friends for help to support me financially and make up the increased cost that renting accommodation and turning sole carer fully will mean and I have started looking for a place to move into. I had earlier planned to move far away, but Nisarga and Raka love each other normally and Nisarga really has very few people who understand him well, so I am looking for a place close to ours, so that they can meet regularly, but we have our own life and I can breathe without cringing again. This is it. The concrete proof that staying together won’t help our son thrive. The solid support that friends are extending. If at this point too, I let myself be convinced to continue, then I am the one not acting in my son’s interest. That is one thing I have tried never to be guilty of.

    Nisarga and mom will be embarking on a new adventure from now forward. We will live with joy and to our best, because the other shock today was the heartbreak of seeing another parent faced with the mortality of a beloved child and my million fears that I never give voice to are eating me alive.

  • Nisarga learned to open bottles

    Today afternoon, the husband came up at me furious. Nisarga’s face is smeared with snot. What kind of a mother are you? Can’t you even clean his face? He wiped Nisarga’s face clean.

    I was puzzled. Nisarga didn’t have a cold. I hadn’t noticed him cough or sneezze or anything, and he’d given me a drooly kiss minutes before heading off to the outside room and encountering my husband who got immediately furious. He was drooly, but I most certainly didn’t notice any mess on his face. Strange.

    I shrugged it off. Kids. Who knows?

    The maid had just started to sweep the room, when she asked me what it was in the upturned stool. Puzzled, I went over. It is a short plastic stool that Nisarga had turned upside down and was banging for fun. the inside of it had a white mess. Thinking Nisarga had probably puked, I told her to put it in the bathroom, and I’d wash it. I looked around. There was no visible explanation for what else it could be.

    This was most puzzling. The stool was behind me, as I sit working on the laptop, but it was a mere two feet away. I may miss a running nose, but no way is the mother gene in me not going to notice if the child vomits in such a quantity a mere two feet from me. It was strange. I realized that it probably was vomit that my husband noticed on my son’s face.

    But there was something odd about the “vomit”. The inside of the stool is reinforced with ridges for strength, and they form a grid, so that there are raised squares. The “vomit” was in three of the squares, but they were not adjacent squares. Also the height of the stool being such, and the gap between the legs being too little, it didn’t seem physically easy for Nisarga to stick his head there to vomit like that.

    Still, the mess had to be washed. Gingerely I ran water over the stool and the stuff started foaming! I touched it. It didn’t feel bad and smelled fantastic. Like my moisturizer, in fact 😀

    In the meanwhile, the maid had independently reached the same conclusion when she found the empty moisturizer bottle pushed deep under the cupboard – with its cap off. I give him the bottle to play with because he likes it better than his toys. The cap is always screwed on well. No one is in the habit of half closed bottles here.

    We have deduced that the kid has learned to screw the cap off the bottle and figured out how to pour stuff, smear it on his face, and then generally pour it around into suitable containers, which the hollows between the ridges on the inside of the stool turned out to be. And he seems to have enjoyed it thoroughly, because on seeing the bottle again, he immediately tapped it on his hand over and over till the remaining few drops of moisturizer were on his hands too. Then he rubbed his hands together and wiped his face and inhaled deeply. Cute.

    All in all, I lost a bottle full of moisturizer I liked very much but never used. I learned that the kid now must be given empty bottles or stuff that is safe for him and we don’t mind losing. The husband not being able to smell hadn’t realized when he wiped his face that whatever it was, it was something perfumed.

    Best of all, I am quite thrilled that he has figured out how to open bottles. Unscrewing a cap is not an easy trick for him.

    I gave him bottles to play with again and again for hours after that, but he didn’t open another.

  • Sitting up on his own

    There are dozens of half written drafts and yet somehow I don’t seem to upload this blog as often as I could. Nisarga is growing, learning. I have been sensing that he is able to sit for a while now, but when made to sit, he loses confidence and supports himself with his arms, slides onto his back or front immediately. This time, I was able to con him into watching his favorite song on my laptop, while we did our exercises, and voila! He was sitting on his own, just like that.

    I sneaked away to record this video. He sat for more than five minutes – we played the song three times while he was sitting. He didn’t lose his balance. When he got tired, he lowered to the floor and creeped off.

  • Nisarga at the Indian Homeschooling Conference

    Just back from the Indian Homeschooling Conference in Khandala. I had taken Nisarga there. Our first major trip, only possible because a friend played a belated Santa Claus and procured for us a second hand framed backpack carrier from Australia (none available in India). This allowed me for the first time to put both Nisarga and most of our luggage on my back leaving my hands free and I was able to take on the challenge of taking him solo for a five day conference with all the luggage and travel it entails. It was tough, and heavy, but it was possible. The rest can be overcome with determination.

    And boy, am I glad I took the decision to go! It was a life affirming, enriching and informative experience.

    Right from the time when I met other homeschoolers to get on the shared bus (where I arrived due to a pick up from my parents home by a homeschooling family, where we stayed the previous night), compassion and help was abundant. To manage the luggage, to manage Nisarga for when my arms got weary… The bus was something of a misadventure for us. Nisarga got severely motion sick and suffered all the way. The only thing to do was a bath on arriving in Khandala.

    But the unpleasant start apart, the community was like coming home. We were at St. Mary’s Villa, which has a pretty big camus with large dormitories and enough accommodation for hundreds of people. Huge lawn and abundant play areas and beautiful views. Nisarga took one look at the kids running riot and wanted to be set down. He did not want to be picked  up again till we left unless it was to attend to some need. He was creeping all over the place and I gave up the idea of appearing a competent mother by keeping the child tidy. Over the next five days, he creeped on the floor everywhere. Indoors, outdoors, corridors, session areas, lawn, dining room… you name it. And I discovered just how much stamina a supposedly fragile child like him “who cannot even sit” actually has.

    He was interacting with people in unprecedented numbers on his own terms. Charming them, loving the attention, or creeping off lost in his own thoughts.

    The adults were wonderful. Whoever was in the vicinity had an eye on all the kids around. I never fell short of people who’d happily keep an eye on him while I took a breather. They sang songs to him, got him colors to play with, told him stories, carried him around showing him things…. or just walked along as he creeped off wherever the whim took him.

    Even more amazing was that there were sessions that he actually could participate in on his own level. Storytelling, salt dough play, the art corner to “draw” whatever he wanted and abundant music. We experimented with giving him paint to dip his hands into to paint when he had difficulty drawing with crayons or brushes. Alas, he painted his body and didn’t touch the paper for the most part. He tore chunks out of salt dough lumps, and when I shaped them into balls, picked them up and put them into a neighbouring child’s plate, where another adult promptly made a basket for all the “eggs”. The spontaneity and adaptability of being in the moment was what he thrived in.

    What was precious for me was the affirmation in being among like minded souls who didn’t so much as twitch an eyebrow over the idea of a parent challenging and discarding well engraved “best practices” if they didn’t work. I was astonished to realize that I was actually quite a great mom. Most of the time I’m just living in the moment, coping with life as it unfolds. The idea that I was doing it in a manner that in the opinion of others was enriching for my child was a novel and very gratifying experience after reconciling myself to being the sole person to blame for everything gone “wrong” with Nisarga, for not “obeying” doctors, for being …. unconventional and unapologetic about it. The idea that there could be not just individuals, but an entire community who thought what I was doing was absolutely fine and recognized that those choices were made because I was putting my son’s interest first was something I didn’t realize how much I needed till I experienced it.

    Another unique facet of this community was the kindness. Not just the adults, which one would expect with a lot of parents committed to a child led perspective. but the kids as well. With Nisarga creeping all over the place and preferentially haunting corridors, I had resigned myself to a few accidents with people tripping over him, or stepping on him apart from the inevitable well scrubbed hot bath on reaching home. To my astonishment, not one such accident happened. Here was a child getting underfoot with all kinds of hyperactivity happening around him – toddlers on tricycles and scooters, older children on various kinds of skates and skateboards, general running at full speed… and not one child trampled him. It is like they were aware of each other. They slowed and went around him without fail. I don’t remember seeing anyone tell them to be careful. They just did it on their own when they realized he was around.

    This, I guess is an outcome of sensitivity. Children learn from what they see more than what they are told. With parents being sensitive, that was the “idea” of how one can be that was available to them. In the five days, I did not see the children be unkind to each other. I didn’t notice any serious fights or telling tales of each other to adults. But more importantly, I didn’t see adults yelling at the children either. I didn’t see taunts, ridicule, insults, threats, orders or any of the many ways we usually see parents control their children. Children were doing what they like, including the occasional racket in the middle of a discussion, and they never even got told to keep quiet! How refreshing.

    The talent among the parents was incredible. There were at least three story tellers with their unique styles that could hold an audience spell bound. There was a long time homeschooling parent who was literally the Pied Piper of the conference. The kids would follow her where she led, do what she asked. There were sessions on toys from trash, natural farming, RTE and NIOS, guest sessions, home remedies and health, storytelling, “How many particles in the world”, birdwatching, a trip to the lake, peaceful parenting, creativity, FAQs for new homeschoolers and those who were guests come to find out more on the open day. And many more. There was so much for parents to earn and take home to improvise for their learning needs.

    And it was clear that parents and childrens were both learners when homeschooling.

    In the midst of all this, the children produced five short films, several plays, dances, countless individual performances of musical instruments, songs, recitals, jokes, sold crafts in a small mela…. I don’t know if any individual can describe everything that happened.

    As a long time homeschooler put it, if we don’t allow it to stress us, the noise of their excitement just becomes like say traffic noise. Ambient and it doesn’t bother a session. I saw that this was true. It really worked like that. This was indeed a good thing, because the few sessions I participated in with Nisarga, he babbled along with whoever was speaking very often. And it didn’t bother anyone. No complaints. No one turning around irritated at the disturbance. It was an amazing symbiosis. Parents and children operating fully intent on their respective goals and in the same space with no hassles. And when you talk of a community of hundreds, that is no mean feat.

    I think the surprise moment for me was when last night, a girl was going around with a sheet of paper and she asked me for my phone number. I gave it to her, and told her my name. She dismissed it saying she wanted the number for Nisarga! I guess this is the point when a parent realizes that their child has been forming their own relationships independently of the parent. Even if it is a child that can’t speak or even sit. Astonished doesn’t begin to cover my reaction in that moment.

    I could probably talk on and on, but there will be more updates that are less about Nisarga and me on the Homeschooling blog, so interested people could probably head over there.

    Nisarga has been quiet since we returned. He responds, but isn’t doing much on his own. I am wondering what is going on in that head. Is he assimilating or is he missing, or perhaps both? He hadn’t wanted to leave.

  • A day of fear

    Today, while in Nisarga’s favorite exercise room, I had Nisarga in a wheelchair, while I turned around and made space for him to sit in the pool of balls (a sensory stimulus exercise he loves). I must have turned my back on him for maybe a minute. Next thing I know, he had fallen head first to the floor behind me.

    There was no visible sign of injury, and the crying was normal after a head bump. The doctors didn’t seem overly concerned by what had happened, but I am out of my mind with fear. Not fear that he has been injured. He had been cranky since waking up this morning, but nothing added after the fall. I am terrified because it is dawning on me how big the problem really is.

    Nisarga was sitting cross legged in the wheelchair. Very stable. He even goes down slopes like this without losing balance. Yet he had managed a fall that would actually require him to make serious effort to achieve. He probably tried to reach out to me, or the activity in his eagerness, and fell out of the chair instead of losing balance (which would be impossible in the position he was sitting in).

    All day, his balance has been very bad. He has stopped sitting spontaneously as well and most of the time doesn’t even sit when told. This is a definite regression and it is not today alone – which could be explained as a bad day, upset stomach or something.

    This hospital seems to be so good, yet the results we are getting are similar to the physiotherapy. He hasn’t really learned anything new, he has forgotten things he used to do, and any exercises make him stiff. The effect of the medication too is unclear. Just like the previous times when I used to interpret any change in behavior very optimistically, only to realize later that there was no concrete change. The Feldenkrais sessions too lead to very confusing outcomes at times these days – is it because I have run out of insight, or is it because of two different ways of learning to move interfering with each other is tough to say, but I no longer get a clear understanding of what’s going on with him.

    Frankly, I am depressed today. I don’t know why he is regressing or whether his condition is getting worse, or it is a result of exercise or medicine or a combination of any of these. My hunch is that he is extremely sensitive to triggers that make him rigid, and the Feldenkrais method helps us work around them, but the rigidity of the movements of his physiotherapy trigger it. In the sense, he isn’t really able to sit like a normal child, but we had workarounds that let him sit at will, however he could. Now that the physiotherapy is trying to make him sit in specific ways he can’t, he can’t do that or the workarounds because of the rigidity. But I may be wrong.

    I am at the lowest point in terms of optimism in a long long while. I have no confidence in what I am doing with him, I have no confidence in what the doctors are doing with him, I can no longer even count on abilities we took for granted so far.

    On a personal note, the relationship with the husband is deteriorating, and I had been hoping to become independent and move out. One big deterrent was the lack of mobility for Nisarga. It is difficult to go shopping if you can’t even get the child to sit a minute while you take money out of your purse or put groceries in a bag. How does one live independently with added expenses AND not even have basic mobility to count on?

    And now that fear is magnified a hundredfold. Forget putting the child down to do something, the child isn’t even save if I turn my back while he is in a wheelchair!

    Things are looking really overwhelming. I have no choice but to move on, but I for the first time in my life I have no idea what I am moving toward other than putting one foot ahead of the other.

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  • Update on effect of Lioresal, general stuff and Un-hygiene day

    There seems to be no dramatic physical change in Nisarga since starting him on Lioresal Syrup (Baclofen) for his spasticity apart from slightly less stiffness in his legs. It is so slight, that it could also be my desire to see a change more than actual change.

    However, there are changes on other fronts. His food intake has dropped. Just as he was eating marvelously, we are back to finding ways to tempt him to eat. This worries me, as this kid seems to take his own time putting on weight, while one day of ill health can reverse any gain and make him look all bones. But I think it is too early to worry. I have noticed it at once, and am on top of this. I can tempt him to eat more. I’ve done it before successfully. Also noticing that immediately after the Lioresal syrup dose, he refuses nearly all food and I’m guessing from his sometimes mouth-open-tongue-out expression that he may be getting slight nausea from it. So today I experimented with feeding him full first before the medicine and giving him a couple of hours before facing a meal next. That seems to have worked (once). Will update.

    But here is the real kicker of a change.

    Whether visible or not, the kid seems to have a spurt in energy (which shouldn’t make sense if he’s eating less and maybe suffering nausea). I am guessing here that he is experiencing less rigidity, though the visible effect is not too big and simply has enegy left over that would normally go into controlling his body for basic functioning against the spasticity. That is a wild guess, because nothing else would explain his sudden getting into all kinds of things.

    For example, today seems to be un-hygiene day. I am imagining this kid having a mental list of icky things to do that he’s ticking off. Within a few hours of waking, he’d managed to get into the balcony off the bedroom (read dusty storeroom) five minutes after his bath. And yeah, he creeps on the floor. He can’t crawl yet. Back to the bath – the leftover water was still warm.

    As I made him breakfast, he went to the front door and pushed around a pair of slippers and was tapping one all over his body. Then he upended a garbage can. As I speak, he’s managed to pull out all kinds of electronics mess and wires we had put into a large bag to sort later. I guess I’ll sort it today. He’s done half the work. His face is streaked with dirt and he’s grinning like a demon. I’m looking at a phone banged into three pieces and swallowing a bit before returning the grin. “Look! it became three pieces” this is an old favorite activity.

    It isn’t that I keep things where he’ll reach them, but clearly the kind of keeping an eye on things I am used to now needs an upgrade.

    So yeah, nothing concrete I can put a finger on, but there are enough subtle changes that he’s catching me by surprise.

  • Another day at the hospital

    Another day at the hospital

    Another Wednesday, another trip to the hospital. Our first since the big Cerebral Palsy clinic day, which had gone far less dramatic than we had been hyped up to believe.

    On the positive side, the session for speech therapy went well, with the therapist giving us several ideas on encouraging speech that ranged from toy choices and interaction styles to massage of his cheeks and mouth area. Lots of ideas with potential.

    The time spent in Room 106 with its various balancing apparatus was very useful again, like last time. We tried out a few more pieces of equipment including a rocking horse kind of thing, which Nisarga enjoyed tremendously.

    The two physiotherapy departments continue to be a pain. We have been prescribed certain exercises for him, that we must make him do, but Nisarga remains true to his history of not liking repetitive and regimented movement as well as becoming stiffer after doing it. Frankly, I agree with him, as logically, they do not appear to be headed in a direction that will contribute to his movement choices. I don’t anticipate much good to be resulting from these and am, in fact having to work harder to combat increased rigidity, both in him, and in my mind, as forcing a crying child to do exercises he is trying to escape just does not fit my view of humane.

    I also think it is dangerous, as crying is the only way he can indicate if he is in pain or other discomfort, so it may be possible to injure him by forcing him to do something he is resisting with everything he has in him. And he is not like that. Nisarga is one cooperative and cheerful guy. Uncontrolled crying is so not him at all. So I am very disturbed by these therapy sessions, particularly the one on the first floor, where the therapist is extremely uncompromising in the movements she wants him to make and Nisarga dislikes that so much that he simply refuses to have anything to do with her.

    I need to find a way to select the therapies that are helping and opt out of the ones that aren’t, in order to maximise the useful impact on him, and reduce stuff that wastes his energy with stress or adds resistance to an already difficult reality. Or at least ask the therapists to not force him and simply show us the movements, which I can try and weave into our Feldenkrais sessions. This is not going to be easy, as the husband is usually inclined to think I am a fool and don’t care about Nisarga’s well being and etc, so apart from resisting the considerable pressure from doctors to “do this if you want your son to get well”, there is the home front too. Why would I be happy to cooperate with one therapy and not another? What vendetta would I have for some therapists over others when they are all new to me? If I was resisting for the sake of it, I’d do it for the whole gig and save time traveling 4 hours every Wednesday in insane rush, no? Procrastinating. Who knows, maybe against the odds, the exercises help and I don’t have to do this battle?

    Anyway, I am noting the movements those therapists see as desirable and trying to achieve them in more respectful ways at home. Hopefully that will help. Or at least not harm.

    In other good news, the medicine Nisarga had been prescribed at the Cerebral Palsy clinic had been very difficult to find, and we had almost given up, when a short tempered nurse told (an even more short tempered) Raka something that led to me suggesting yet another attempt to find it. While Nisarga and I had a great time in the room with the balance equipment, Raka went out searching for it again and chanced to find some lane of medical wholesalers, where he finally got the medicine.

    This is very good, as my internet searches had shown me that it helps decrease spasms, which is very urgent for Nisarga, as he is not able to do a lot of actions he knows how to do, simply because of involuntary movements fouling everything. If the medicine helps dial the spasms down, that one chance search in some godforsaken lane will probably do more to help him than 10 therapists.

    Yeah, so that is that. So far, so good.

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  • Vaccine damage – fact or fiction?

    It is one of those days. I’m looking at old photos and videos of Nisarga and the difference is so stark to me. Yet all these years, doctor after doctor has dismissed vaccine damage as a possibility. I cannot understand this. If a child has changed dramatically within days of being vaccinated, how can it be discarded so easily?

    Worse, say the doctors are all knowing and know everything there could possibly be to know about what vaccines can and cannot do, with the kind of scandals around medicines with severe quality control issues to the point where some claim that over half the drugs being produced in India are of lower quality than claimed, how can ANYONE dismiss the possibility so totally and without investigation?

    I go nuts every time I think of this. What has happened with Nisarga has happened, but surely more children need not go this way? Yet I feel impotent. In all these years, not a single doctor has noted the symptoms to report a possible vaccine reaction.

    I realize that I have been very ignorant and lax in terms of tracking changes, but to the best of my memory, this is what happened. Nisarga got vaccinated for DPT and HiB and I don’t know which one it was, but he became what I understood as lethargic. By the time I realized something was really wrong, it was a good few months gone by. It was nothing dramatic, just less and less activity and by the time I realized that he could no longer do the things he used to be able to and was not just in a low activity phase….

    He had been physically mobile since birth. He used to kick his feet in the air, wave his arms about from the beginning. Just before the vaccination, he had rolled over for the first time. While I don’t have a date by date track, for proof that I’m not imagining things, this is Nisarga at a week old. Note how his arms and legs both move against gravity freely, though he was born underweight and is rather scrawny. He rolled over to his sides in the process – this is him at one week old. He still cannot turn to his side this rapidly now at 4 years old. The strange expressions are because he was pooping at that time. He still makes strange faces while pooping 😀

    This is him at 2.5 months old. His weight is slightly better. Again notice how he has no problems waving his arms, though his feet are not so visible in this one.

    This one was shot soon after the vaccination. I don’t remember the exact date, but I hadn’t realized anything was wrong. Just thought he was content to watch instead of grab the rattle. Notice how his arms are spread wide and unmoving. It was over a month before he started using them again, and improvements were very, very gradual and with a lot of hard work getting him to learn. He was able to clap his hands reliably at 3 years old. It is today that he was able to hand a toy into my hand for the first time. He is 4 years old.

    This is a month or so after that video. Notice how his arms and legs barely clear the ground in spite of him being so excited and laughing (which makes it easier to bring hands and feet closer to body).

    If this does not deserve doctors even taking serious note of symptoms reported, I don’t know what the hell does.

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  • Fun at the AIIPMR

    Fun at the AIIPMR

    These are two activities at the AIIPMR that really helped Nisarga. He enjoyed doing them, and he was helped by them. In contrast, yesterday’s manipulations with his foot have left him with those stiff legs I was hoping we could leave in the past…

    Tracking the impact of various elements of therapy on him, so we can choose the more useful with time. Anyway, enjoy these pics 😀

    This is a foam tank full of spongy balls.

     

    They put Nisarga in this tank of balls and he was happy like a fish in water. The balls seem to provide slight support as well as sort of suspend him so that he is free to take the posture he is most comfortable in, regardless of gravity. He was picking up the balls one by one and throwing them into the bucket.

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    This was another very useful activity, where he was made to sit straddled on this suspended roller and the roller was swung gently. I imagine it helps with trunk control, since at least that is what I could feel his back up to as I supported him. I sneaked in a few Feldenkrais touches and movements and I found him responding really well. The changes lasted well after the session, for a couple of days at least.

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