Category: Daily Life

  • 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.

  • Beautiful, brilliant day of learning

    I had been getting a bit pushy with Nisarga’s movement lessons. Needless to say, it was counterproductive. He was getting bored rapidly or cranky. I was getting frustrated at the lack of a breakthrough. So yesterday, I decided to back off (long overdue). I spent time reading about the Feldenkrais Method, reminding myself of what I was to do and what not to do. I watched videos on youtube. Returned to our session with a calmer mind, determined to do nothing, till it “happened”.

    And it happened. Boy how it happened!

    In one session, Nisarga learned to say “wawa” with a finger stuck in his mouth while saying “baba” so that his lips didn’t touch. Rapidly, he moved to more fingers, less fingers, stuffing T-shirt in his mouth and…. saying “wawa” erratically, but without anything preventing his lips from meeting and producing “ba” instead. Five minutes later, he was making a “guuuuh guuuuh” sound.

    I stopped while we were ahead, did some work with his back and legs and worked a bit with a “false floor” (another post about this maybe later). Today, as he was sitting straddling me as I lay on my back, he suddenly leaned forward, pushed with his legs and put his upper body weight on my arms (he still lacks strength) and voila! He was standing!!! Heavily supported and very brief, but the movement was there, the shift of weight on his legs, the straightening while pushing.

    I supported his elbows so he could put weight on them and he stood up even straighter. Transferred him to a lousy walker we have (need to get a better one) and with some encouragement and generous assistance, he was trying to pull himself into standing there as well.

    What a transformation from nothing happening yesterday, to everything buzzing today!!!

    And as always, it took me to dial down my hyperactivity, do less, listen more.

    In a brilliant, brilliant mood. Only wish I had someone who could run a camera while these moments were unfolding.

     

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  • Nisarga’s 4th birthday

    Today is Nisarga’s fourth birthday and it is a day of mixed feelings. On one hand, life is full of affection and small, but real learning. On the other, no matter how much I wish not to measure milestones, it is yet another birthday gone past without Nisarga achieving any dramatic milestones.

    He sits well enough with support, but sitting without support is still far from reliable. He attempts to stand using me (and only me) as support, but it needs so much help that it can’t be called standing. A part of me dreads this day when people will ask about “progress” and my usual descriptors that bring joy will not communicate anything real to them.

    So he understands better, he’s learning things, moving slightly better, taking an interest in the laptop, but what does it mean? Does he sit, stand, read, write? Nope.

    It gets tough to explain what I see as daily changes. Small, but welcome. Perhaps they do not impress one who doesn’t realize that there are also answers like no change, no matter what I tried, or worse, regression. We have been through that too.

    So different is the life to present and so different is the one we life.

    For the world, I’m the mother of a special needs child. At home, I’m just mom and he’s Nisarga and life is pretty amazing actually, if we don’t look at missed deadlines of “normalcy”. We have fun together. We respect each other. He’s developing a distinct personality, which I am quite awed to realize is affectionate and sensitive to others.

    Right now, as I type, it is almost five in the morning, and Nisarga has been up all night, playing. He woke a little past midnight when Raka switched on the TV. Raka is fast asleep now, but after a solid  4 hour sleep, Nisarga was awake “for the day”, so to say. So we played in the middle of the night. We watched videos, did silly things and showered kisses on each other. (Been a long time since last update. Kissing is our favorite activity these days).

    Exhausted, I think he will sleep if I try now. Giving him a few minutes to play with an empty snacks wrapper (he has been fascinated with making plastic crackle since last night) while I capture this moment for his blog. The pre-birthday birthday time, when the world hasn’t yet woken, but hours of celebrating a treasured relationship have already happened.

    PS: In other news, I got him a tricycle for his birthday. He can’t ride it, of course, but he enjoys sitting in it and being pushed around, and I’m hoping it gives him ideas for things he could try doing with his feet.

  • Nisarga has learned to open the fridge

    God help me! Every time the kid goes out of sight, he is right there at the fridge, with its door open, basking in the cool air. On one hand, I’m thrilled, as always when he learns something new – it is an obvious solution, yes? Hey! It is hot. I know where mom keeps the cold air 😀

    He’s cute and obviously quite delighted with how he has figured this out, so I’m not bursting his bubble. I let him enjoy it for a bit and then distract him and pray it works…

  • Fascinated with the laptop camera

    Rofl. Today morning, Nisarga hit some keys on the laptop, and started the camera, which is something even I haven’t figured out. So, we clicked some pictures and made some effects. Here are the results. Some of the better ones, that is.

    [satellite]

    He found the graphics of the software and the animation of the snapshot flying to the folder when clicked so fascinating, that he wanted me to keep clicking. We clicked some 80 odd pictures – almost exactly like each other 😀

  • When the going gets tough

    It has been a month now, Nisarga is super clingy. We had gone to stay in Virar when my mother-in-law fell ill, and ever since then, he simply won’t let me out of his sight.

    His medication also doesn’t seem to be working any miracles, and the dystonia is more pronounced. He has increasing trouble falling asleep. His body just won’t quieten. Arching, twisting, jerking… well… not as bad as that sounds, but he is constantly moving. All. The. Time. Day and night and even in light sleep he can move enough to wake himself up.

    This also means that he is spending tremendous amounts of energy, and no matter how much he eats, he isn’t putting on weight. I feed him the regular chapati sabji and stuff whatever we eat, and keep giving him something to nibble as often as he wants. High calorie somethings.

    I used to feed him infant food after his meals, so that he was solid full and not just tired of chewing. Now he doesn’t want that anymore. He likes the “real” food more. While that is good, now I’m wondering what I can do to make sure he doesn’t lose weight…

    But my real concern is the dystonia. Just had a marathon three hour session trying to get him to sleep. He was sleepy – ready to sleep for three hours, but just as he would fall asleep, he’d jerk, or twist, or arch his back, and we were right back where we started.

    The new medication also seems to have added to his constipation, so that becomes yet another reason he won’t sleep.

    Here is a video of him generally doing his thing. He loves to be in this passage for some reason. The way he uses, or rather doesn’t use his limbs as far as possible worries me. With the Feldenkrais, he has learned to use them some, but needs reminded, without which, this is what he does.

    Frankly, I don’t think the Bexol is working. Let us see what his neurologist says.

    In other news, he is becoming addicted to his medication, which I think is a good thing. We never miss or delay a dose. Seeing as how he is supposed to take it long term, I don’t see this as bad at all. Breaks my heart to see the little guy cranky and stiff and wanting medicine – of all things. After the first few days, he has understood it helps him so much, that I can put the tablets in his mouth, and he simply chews and eats them :(

    Reality is coming home to roost. Nisarga hasn’t made any significant progress, his dystonia is getting more troublesome, and I am increasingly exhausted.

    The only bright spot is somehow, I found the energy to begin doing the Feldenkrais sessions with him again for the last two days, and they are still helping him. I think I need to quit worrying about how much I don’t know, and focus on learning and doing all I can.

  • Rediscovering Water

    To make a long story short, the water storage tank at home overflows when some conditions are met, and those conditions got met today. The result was a big puddle of water in the passage outside the toilet and bathroom.

    This is the passage. The area before Nisarga, near the tub of washing gets totally flooded. As it did today. With the mother-in-law busy in the kitchen, I decided to mop it up before Nisarga got into it. I started mopping, and as usual, Nisarga creep-raced out of the bedroom. Before I could put down the mop and wash my hands, he was well into the puddle of water, staring at the water in amazement.

    I was like… since he’s already wet, why not? let him enjoy this new experience too. So I splashed the water a bit. AND he broke into laughter. He immediately started splashing the water. This is new – this instantly understanding something. I let him play for a bit and took him back into the bedroom to get him dry. Not a chance. He wanted to go right back there into the fun.

    So I distracted him by talking about it. I asked him how he played in the water, and he made the splashing action!!!!! This is beyond new. This is really communicating something not immediately happening. Wow!!!

    Realizing that he wasn’t going to quit pining for the water, I ran him a warm bath, and we had a splashing time and I thoroughly tired him out. Right now, he is with his grandmother, having dinner, almost asleep

    Earlier in the day, he had started reaching out for things beyond his reach. He had started answering “How does Nisarga sing?” asked by Raka with “aaa…aaa…aaa”. By the afternoon, he was answering that if anyone asked.

    He is already using his body more and more, using his hands to manipulate objects better, and using his legs far more than before. The stiffness is decreasing, though he still creeps with them stiff straight, as you see in the picture.

    One week post the doctor’s visit, and the increase in the dose of Syndopa and the new medicine… this is where we are. I am so thrilled, I can’t stop grinning. After over a year of struggling all alone, listening to all the wise words about how his problems were my fault and I should not neglect him, etc, finally it is clearly visible that they weren’t. The medicine is distinctly helping.

    No words to say how big a load off my chest this is. If these are the changes in one week, I am confident that with the Feldenkrais and the medicine, we’ll be fine.