Got these beautiful words by Natasha Badhwar in my email today. Reminds me so much of Nisarga’s enterprising ways.
Raise a child who laughs in the face of fear. A child who respects his parents and protects his family even when he disagrees with them…
Raise a child who is not afraid of his own voice. Who does not hide to stay safe, especially when his silence can be used to target and hurt others.
Raise a child you are willing to learn from. A child you might have to hold protest rallies to protect one day. A child you will defend. A child you might have to hold candles to commemorate one day.
Be a fearless parent.
I am happy to report that one week after the surgery, Nisarga’s pain is minimal. He is still a little subdued (mostly because he can’t do much with half his body in a cast), but there is little pain, lots of smiles, and we even had a moment when he balanced himself well enough to raise both hands – something not really possible for him, because he used to need to keep both hands on floor to sit even briefly. I’m hoping this means that even with the support of the plaster cast, part of it is also that his hip is in position where it should be, allowing his weight to rest on it, instead of needing to use his hands.
It isn’t all easy. Movement for him is very difficult, and being comfortable can also be a pain when his body can’t really change position. It can result in some strange contortions like…
Nisarga sleeping in his spica cast
He is just not used to sleeping on his back, so invariably he wants to sleep on his stomach. But the first few days, he wasn’t comfortable on his stomach. When he fell asleep in the middle of changing his diaper (I had turned him like that to tuck the backside of the diaper into the cast), we decided to prop him into place if the position gave him enough comfort to fall asleep instantly.
The pain is better now. Will his movements also be?
Who knows? Only time will tell.
In the meanwhile, Nisarga has gone from trying to cut and rearrange my handmade soaps to trying to put the in plastic bags and shrink wrap them, because monkey see, monkey do, and mom isn’t cutting soap these days and we are each other’s best fans and pals. Like so.
There was life before being a mother and there was life after. It is as though I am a different person now. A person I like. As a parent of an unschooled child, I often face questions about my role as a parent. Opinions vary. Many see education, discipline, good ideals for a better future India that current adults cannot create and more as part of their parenting goals. To me, it is simple. It is nurture. It is providing him with an environment where he can thrive.
I see us as companions. I am older, been in the world more, with greater abilities, so I assist this very precious person by doing things he cannot do for himself yet. Helping him discover a world I have some familiarity with. Giving him my highest honesty so that he may never lack for a robust sense of how he is perceived. I am his most enthusiastic supporter, fiercest defender and privileged companion in the journey of life.videos porno incesto milfster
A child facing severe disabilities, someone who cannot yet confidently sit or talk at almost 6 years of age, he is still a person I am proud to be associated with (as opposed to have shaped/created/etc). The time many children would spend on learning to move and run and talk has, in his case, translated into a time observing people. He is blessed with an emotional wisdom I envy at times.
Once, an aunty from the building visited us when Nisarga was playing with some toy. True to many bullying adults, she entertained herself interacting with Nisarga for a part of the visit. Alas, the entertainment was at his expense rather than with him. Taking his toy, she held it to herself, said it was hers. Nisarga is not possessive. A toy is for having fun. If you take it from him, he only looks on expectantly to see what you do with it. However, I was irritated. I don’t appreciate my son being poked at for amusement and intervened a bit abruptly telling the woman “aunty, return his toy. I’ll give you another” in the cliched style of telling a child snatching another child’s toy. It was an awkward moment, but the woman stopped trying to make Nisarga feel insecure. I will not be modest. I secretly took great pride in how I put her in her place “That will teach her to mess with MY son”. It was combative, aggressive and perhaps unnecessary, given that the woman did not mean him any harm. I was infatuated with myself as the great Robin Hood of the inequalities of respect for children. The masterstroke of the visit happened when she got up to leave. Nisarga went over and gave the toy to her. Again, when thoroughly charmed, she refused politely.
I have seen him do this over and over. There is no such thing as a person Nisarga cannot relate with. He gives space to those not interested, woos those who show potential, has lured countless people into serving as his escorts for short trips outside (which is his primary interest in people – the potential of going out). He blows kisses to the point people forget he can do little else. My “serial kisser” as I’ve nicknamed him, is an endless source of affection. A friend’s daughter figured it out quickly when she visited. She toddled around the home, returning periodically to squat next to him for a kiss before taking off again.
In a world obsessed with achievement, this disabled child has figured out and aced the one qualification within the scope his current capabilities that can help him – how to invite an endless supply of well wishers willing to make and keep him happy. Even the postman asks after him, if he doesn’t see him instantly peeking to see who’s at the door. The same postman he’d once conned into taking him on an elevator ride with heartbreaking sobs over this utter stranger leaving Nisarga behind when he left after delivering a parcel. Yet, at six, he has managed almost nothing traditionally recognized as achievement. My tweets about his antics have earned him a small chunk of my followers on twitter who ingore everything I tweet (politics, digital rights, opinions, current affairs, more), but never fail to respond to the occasional tiny wry, funny, frustrated updates about my life with him. It could be said I write well about him. It is just as true that he has taught me to appreciate him.
I see this as a part of nurturing him. I have done many things in life. A few that I am proud of too. And yet, being able to provide a space where this “flawed” child will be unconditionally respected, loved, secure is among the things I have done imperfectly and the most precious. He is at the root of some of my most controversial choices. Some of the most difficult challenges to deviate from conventional wisdom and stick my neck out in pursuit 0f something that is better for him.
When I committed to non-violent parenting, Nisarga wasn’t even born. Categorically including not just physical, but verbal and emotional violence to the point of avoidable lack of consent being violence and unacceptable was a move that had almost every “well wisher” painting pictures of doom and gloom with a spoiled child making everyone’s lives hell. And yet, the opposite has happened. Receiving understanding has helped him respond with understanding at an age when children throw tantrums as a default. It has helped him be secure about himself and his place in the scheme of things at home – an assisted equal, not an inferior person without a vote. And his freedom of choice in his own home is not hostage to my convenience as far as I am able to ensure.
Committing to unschooling was easier. Already a staunch believer of experiential learning and having no intentions of sending any child of mine to a school, all it took was finding out what it is called. Allowing him to determine what he wants to learn has probably been the most empowering thing I have done for him. And even more transformingly, it extended seamlessly to his “physical therapy” for his disability, where I gravitated toward the Feldenkrais method which is more like a “psychologist for the body” or unschooling the learning of movement, just like everything else than “training” of the physiotherapy sort.
The common factor in the choices has been putting Nisarga first. What will enable him? What will allow him to do more of what he wants with least input of effort? And I went about learning it. In the process, educating myself thoroughly on several methodologies and philosophies of life.
Is it easy? No. Am I very good at it? No. But it is an unwavering goal. Giving up is not an option. Nor is taking the easy bypass at convenience. As I once explained to a skeptic, “Would I overrule my son jumping from the roof of a building? Yes. Without a doubt. But I wouldn’t lock him in his room over it. I’d probably give him a table to jump off from. If I could afford it, and his physical abilities would allow it, I’d even try to offer him sky diving or bungee jumping if his fascination with jumping off from a height persisted!” In other words, his autonomy and choice will be respected and supported by me to the best of my ability – barring risk to life. Nor would I take away his right to choose as a consequence of his wanting something I did not find appropriate. I would find ways to reach middle ground that could give him what he wanted while managing my concerns as well.
Of course, this is the ideal scenario. This Buddha-like acceptance and love can vanish rather rapidly in the onslaught of daily life. That is the part where it is important to persist. To constantly chase continuous improvement rather than a brittle perfection that fragments into nothing if not achieved. So I get really frustrated. And I vent. Usually on Twitter. An episode last week was when the little terror tried to mop the floor with buttered bread. It ended with a stunning insight into what goes on in that tiny head. I’ve been making mock threats to put him up on Ebay if he didn’t sleep in the next 10 minutes for years. The space to vent and laugh at myself a bit allows me to return to him without grudges.
And sometimes I slip. These days I sometimes find a really tired and ugly whine within me when I go “Why do you do this Nisarga? It is so irritating.” And the attempt is to get a perspective on the issue. Is he doing it to irritate me? Since when is he responsible for catering to my moods? How can I handle this better?
Sometimes there isn’t a better. It is summer now. We are both hot and sticky. I hate summer. Nisarga hates summer. We are both cranky. So we just whine our way through some days.
I see this process as nurture. Of being on his side in a way that offers him the best possibilities in the situation. Of being aware of own baggage enough that I don’t burden him with it as far as I am able. Of persisting to create continuous improvements in our lives.
Nisarga loves his tricycle of his. But because he cannot balance reliably, it is difficult to click photos. So these are all the more precious.
Nisarga on his tricycle
Nisarga is not able to move the tricycle by pushing on the pedals at all, but will will find a way. He has taken to rocking himself on the tricycle so that it moves forward.
Nisarga on his tricycle and Vidyut
Two days later, Nisarga figured out how to take his feet off the pedals and was putting them back on as well (though with less certainty).
I was working on my laptop when I realized that Nisarga has been quiet for a long time. This is very rarely good news, so I went to investigate in the kitchen. He had upended a large pot of potting mix (to plant my vegetables in) and was merrily spreading it all over the floor as he played with it. He was absolutely covered.
I hosed him down and gave him a biscuit to eat, while I cleaned up the mess and returned to him with more substantial bread and butter.
On my return, I found chewed up biscuit plastered all over the floor and his icky hands grabbing away at my phone.
I went to clean the phone on priority and returned to find him rubbing the slices of bread on the floor – buttered side down.
I’m not an enthusiastic housekeeper at the best of times and this serial mess making had me agreeing with all the comments on why some animals eat their young, etc. He wouldn’t leave the bread alone, so I figured he might as well do whatever was being planned in that tiny head.
I suppose a bread would seem like a pretty efficient cleaning tool if you wanted something soft and absorbent….
He patted at the caked biscuit gunk for quite a while (I had replaced the buttered slices with normal ones for the sake of my mental health). Clearly not satisfied, he took a slice in each hand and creeped his way to the bathroom, where he proceeded to take a mug of water (he was able to get it only a quarter full) from the bucket.
Now fascinated, I watched as he dipped the slice of bread in the water. I was not able to see what he was doing, but the dismayed look on his face made it clear that what bread normally does, if soaked – gets soggy and falls apart – is not what he had in mind.
That was when a light bulb lit in my head. I have a small piece of sponge shaped remarkably like a slice of bread – now that I thought of it – and he was doing what I did to messes – cleaned them up with the sponge! Awwwww….
All the frustration vanished in a puddle of mommy melt.
I gave him the sponge and he “cleaned” away to his heart’s content. And no, I really can’t blame him for the misunderstanding because you see…
Who can blame Nisarga for thinking the slice of bread can be used for cleaning, if his mom regularly uses the sponge on the left for exactly that?
So, a light hearted update to make up for all the hundreds that I forget to post 😀
Nisarga is quite fascinated by the plants growing in the balcony and the attention I give them. Additionally, he just loves windows. So trying to get into the balcony is an ongoing obsession. Once before, he’d actually managed to get in there and I barely caught him in time to rescue my plants from potential uprooting or worse. Today, I caught him well in time. Listen to that laughter when he gets caught doing something he’d been stopped from doing before!
So far, I’ve been giving Nisarga massages with the Ayurvedic oils about once a day or every alternate day. He loves them. It is about the only time he will lie still without trying to escape while awake. I see some improvements in his strength. He’s been pulling himself up with some weight on his legs for the past few days (note – this isn’t even remotely close to standing, but with locked knees, he can put weight on his legs for a while).
He has also started babbling more and trying new sounds. A few days ago he went “aayiga” another time “yega” – without much predictability, but it is new. He’s also made “na-na” and “de-de” sounds which is new.
No idea how much of this is because of the oils and how much is because of the other changes, but whatever it is, I’m continuing the oil massages because he loves them along with everything else (cod liver oil, occasional spirulina, ashwagandha, honey, no/low gluten, more greens, etc).
Whatever the cause and extent of the changes, he’s in a growth spurt, and I’m going to help him make the most of it.
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.
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.
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.
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.
