BackTHE MOPPET SHOW: The Crockhome Syndrome
When you have a child with special needs, you have to factor in the fact that you'll be battling the really big guns, i.e. the real G-word. Guilt.
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Children are manipulative. There’s no question of that. I am convinced they come into the world knowing three things. What they want; when they want it; and who can get it for them. With the passage of time, they polish this knowledge into a fine art—and why not, there is ample opportunity to do so. Babies, bless their plotting hearts, generally have a sea of unsuspecting souls they can practice their cerebral spells and potions on, folks who will even smile fondly and coo, while they are maneuvered by miniature Machiavellis into breaking rules they have often set themselves. Let’s just call it the Crockhome Syndrome, one that’s one hundred percent effective.
By the time they’re about five or so, yes, that K-word appears. Kindergarten. It takes them about five seconds to look around a room, spot their target (whatever forbidden thing it is they invariably want), assess the situation, complete a quick SWOT analysis, and then, most importantly, hone in on that one ingredient vital to any successful tactical maneuver: A sucker. In our home, incidentally, that’s generally spelled G-r-a-n-d-m-a. Or P-a-a-t-i; that’s a Tamil synonym for Grandma/Sucker, depending on which side of the family’s in town.
It really doesn’t matter if your baby is differently abled, and is non-verbal, like our Kyra. She will probably still have an innate ability to spot the sucker in your particular circle of family and friends, and communicate effectively with them in a way that will make you, the parent, that Creature-Who-Lays-Down-The-Law, look
a) Heartless, or
b) Terribly Heartless
The thing is, when you have a child with special needs, in addition to the heartless quotient, you have to factor in the fact that you’ll be battling the really big guns, i.e. the real G-word. It doesn’t get bigger than this. Guilt. It’s so big that I’m going to really get into it another day, but let’s just start by saying that if there’s no one else to make you feel guilty about something you probably did not really have a choice about, then you’ll figure out a way to feel guilty about it all on your own. Again and again.
It’s there, hanging gently and poisonously over your head, like the Delhi smog in winter, or any other time for that matter, causing untold damage to the inside of your body and head. Equally illogically, your special child knows it, not the smog, but how to play into your (unnecessary) feeling of guilt, that is.
You would think that when your child is non-verbal or can’t hear in any case, it shouldn’t make a difference if she’s silent or communication is difficult, right? Well, think again. Not in this family. There’s silence and then, there’s silence. To explain this needs some context.
I quit fulltime work two-and-a-half-years ago, well exactly two years, five months and one day ago at the time of writing, not that I’m counting or anything, to manage the processes involved in resolving Kyra’s medical issues, which had become increasingly complex. I’ve mentioned in passing, in previous posts, a couple of those problems. More specifically, she is totally deaf on both sides and has a condition called auditory neuropathy, which complicates the business of hearing even with devices. She has bilateral cochlear implants (CIs) that she seems completely non-responsive to—in short, as far as we know, she’s still completely deaf post her CI surgeries, for all practical purposes.
She has also been diagnosed with autism, and has full-blown insomnia, needing strong daily medication to sleep since 2012, which, by the way, means Wyly, my husband, and I, really haven’t slept all that much either, since 2012, so we can be forgiven for seeming a bit strange—sleep deprivation and all that. She has hypotonia, feeding issues and severe gastro-intestinal problems and is currently undergoing testing for other neurological issues.
To go completely off tangent here, and yes, yes, I do that sometimes, if any of you moms or dads have children who cannot chew properly, even if they have their (doubtless sharp) little teeth, try asking your therapist or doctor if it’s because your child has a problem moving his or her tongue. We discovered early on, courtesy a lovely occupational therapist in Gurgaon, India, that Kyra had an unusual problem. She had no lateral movement of her tongue.
In simple lingo (and I cannot give you the medical jargon), you apparently need both horizontal and vertical movement of your tongue for speech and for chewing. We knew Kyra clearly had no problem biting. Those of us in her charmed inner circle all bore badges of honor that were throbbing proof of her incisive ability. Tooth marks on furniture, shoes etc, leading visitors to mistakenly believe we had a new puppy, were further proof of her need to mark her territory, but for some reason, she didn’t or couldn’t chew food, even soft food.
Our therapist, or Kyra’s rather, suggested we get clearance from her pediatrician and if she did not have a nut allergy, we try putting a lump of sticky peanut butter on the inside of her cheek, which would force her to use her tongue to try and dislodge it. This in turn, over time, would get her to move her tongue sideways. It took us around 13 months of doing the exercise every day to get Kyra to move that reluctant tongue naturally, and it was a pain to do it.
But let me tell you, just the pleasure of stopping using a blender to puree most of her food at every meal and then clean that darn blender every single time it was used, was well worth that effort! She still can’t eat the pizzas and burgers that most kids her age can, but she’s getting better, and I suppose that’s a good thing, right? In our unusual world, you learn to spin it positively any which way. (Yes, I’ll take two of that please!)
Anyway, coming back to the halo around my head after undoubtedly being Mother Of The Year for quitting a wonderful, even if I say so myself, professional career to manage my First Born’s needs, you would really think that same first born would understand and appreciate that sacrifice and having mommy to herself almost 24x7. I always thought being Editor-in-Chief was a demanding and lonely job. I was basically a glorified sub-editor (bless those subs!) with more pay, yes, but also crazier hours, a ton more work and no one to gripe to or with or about—half the pleasure, if I’m honest, of a work day.
Now, being Gofer-in-Chief, I’ve realized how easy I once had it, and how demanding a position can really be, with no pay, only work, so the hours don’t even count, and yeah, the only people you gripe to, just grin manically at you in return.
So, is my beloved first-born (and only) child appreciative of all this sacrifice? Ha! Mommy is kept on a very short leash and as I’d mentioned, punishment by silence for any perceived intransigence or fault can be excruciatingly loud and clear. If I make the mistake of going out for a rare dinner with Wyly, and it is rare, as he travels a lot (there, I got in a sideswipe), I invariably return to find that I am being Ignored, with the I in Upper Case.
Daddy gets his loving, she’s used to his being in and out. Mommy is shown her place with a toss of the head, a loud sniff, a firmly turned back. There is no yelling or wailing even now, and which is why I come back to the manipulation, she well knows what will work best, without even having heard her great aunts or grandmoms, masters of the game all, ever having had a chance to coach her. The cooleth doeth to me every time, and I go forward, remorseful, to coax, cajole, and plead my case, even as daddy rolls his eyes and says “wimp".
I try, I really do try hardening my heart and laying down the law, and even though the husband refuses to believe it, it works, kinda, sorta, most of the time. It’s not wimpishness, it’s just that I sometimes wonder if there was something I could have done differently, should have done differently, when she was inside me. And that makes me more susceptible than other moms perhaps, to give in to her sometimes. It’s that same question most mothers of children with special needs ask themselves. For the most, that answer for them, as for me, despite my precious baby’s sneaky scheming, is no. There wasn’t. It wasn’t your fault. Or mine. Sometimes in life, sadly, bullcrap happens. The trick is in knowing it is just BS, shoveling it out of the way as best as you can, and getting on with the business of living.
The Moppet Show is a blog by Kadambari Murali Wade about her experiences of bringing up a child with multiple special needs. A new blog entry will be published every Friday. Read the previous blogs here.
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