Showing posts with label Motor skills difficulties. Show all posts
Showing posts with label Motor skills difficulties. Show all posts

Friday, May 31, 2013

The "NO!!" answer.

Whenever I despair about my child's behaviour or worry about her 'reason' for behaving as she sometimes does, I feel totally lost for answers.... Her Special Needs are  like a vein, thin but impermeable. They sometimes keep me from understanding a lot of what goes on in that mind and heart of hers, so I feel inadequate as a mother. Some days are good; she will give me an angelic smile, maybe even a hug if I'm lucky, and say, "I love you, Mummy". On others, for a seemingly inexplicable reason, she will shout, scream and push me away if I try to pacify her when she gets herself worked-up, which is about ten times a day.

It starts from the time I try to wake her up and ends (if we're lucky) when she finally falls asleep at night. She will sometimes wake up two or three times a night, and is restless and fidgety even in her sleep. She may be asleep or awake when I quietly make my way to her room in the morning, but I'm mostly scared of her shouting out "NOOO"... " I DON'T want to wake up!!" or simply shouting because it's me she sees rather than her Dad. On lucky-break days, the preliminaries (such as brushing her teeth, breakfast etc) dealt with, I offer to help her dress when she screams with frustration. It could be her T-shirt sleeves she's struggling with, or the state of her hitherto shoulder-length hair) She sometimes shouts and screams angrily, on the brink of a meltdown (pushing me dangerously close to one myself) at being asked to swap her shoes over when they are on the wrong feet.

She hates being told to do anything and only takes directions from her Daddy dearest, who is by then, on his way to work. Sometimes, as we go through the motions of our daily power-struggle, the School Bus arrives and R runs to open the door, which makes S become even more agitated at realising (or being told) she is keeping someone waiting. I reach out to iron her jumper or comb her hair and get a high-pitched screech that makes me cringe.  I have asked many professionals, friends, parents of other girls with SN, what could be making her upset- The dreaded, horrid question resurfaces unbidden, "Is it ME!!??" ...."Am I doing something wrong that is setting her 'off' like this!??"

All I know is it is painful and heartbreaking to live through it everyday...Especially because I am the only parent/adult/person she is so volatile towards. Sometimes she gives me an unexpected, crushing hug and I meld into her arms, mentally thanking God for His infinite love an kindness and at times, she will push me away as if I am invading her very being... I was greatly helped by a friend and her two hour experience of my interaction with my daughter, and her suggestion was spot-on. I googled- oppositional defiance disorder and was shocked by how incredible it was that none of the so-called professionals had ever seen what a mother of another child with struggles and trials, worries and anxieties somewhat similar to my own could see.

Asking he if she wants something which I suspect she does (food, clean socks, lump of cheese, juice, water, etc) brings about a 'hmmm' response, or if prompted into politeness, a "yes please, mummy" but it depends on her mood. She will challenge or shout, ignore of simply defy all my directions, instructions, 'routine charts' and timer-monitored tasks. Things will roll smoothly at School where, I am told, she is sometimes defiant but easy to manage with 'tokens' and stickers, praise and encouragement. While I offer her lots of verbal praise and make it a point to tell her Daddy dearest about her good behaviour, (conveniently forgetting the bad!), use sticker charts and prize tokens etc, her approach to me is one of nonchalance and ill-disguised indifference. The only emotion she displays is if I crack up and run away upstairs, and burst into tears, and she laughs her head off at the sight. Her little sister scolds her, saying" Shame on you, S, you've made poor mummy so sad, can't you see she's crying because she loves you??!".

I have learned to control my own feelings; they serve no purpose and are merely wasted on my child who is often unable to vocalize her own. I refrain from talking in anything but the simplest of sentences. I give only the briefest of instructions. I have to constantly remind myself that a word count of over five per sentence is a NO NO. The best times are when I keep my wits and hang on to my patience and optimism. I tap into my reserves of faith and Hope in His love for us all....I do not pray in the conventional Hindu sense, but my bond with Him is as strong, if not stronger, than  my bond with my own children.

Saturday, August 4, 2012

Velodrome Victories.


Yesterday was a fantastic day for Team GB. The shower of Olympic gold was impressive, heady and tipped us fans of British Cycling over the edge of ecstasy. (I was at work yesterday evening, and realised the days events ' schedule was CYCLING, when I was with Mr H, one of my patients who loves to follow the Olympics on the bedside telly, and has become a harbinger of Good News for us, as we nurses often ask him about the latest Team GB victories!!) With poorly controlled enthusiasm after a peek at the nail -biting events unfolding on my patients' Hospedia screens, I bantered and chatted with the lovely people- my patients, their families, young kids visiting their Dad, granddad or uncles, as the historic events unfolded! Many of them shared my grins and agreed that this was the most amazing day- with  Sir Chris Hoy, Victoria Pendleton  and the Fab Four boys taking the podium. Here's to many more victories, personal and national, and many many more people who can, potentially discover the joys of bicycling!!!
 As the band played 'God save the Queen...' and the crowds sang as one voice, their voices clear, patriotic and emotionally charged with boundless fervour and joy I felt optimistic, happy and a bit nostalgic myself! Memories of a childhood spent roaming carefree and joyous, along deserted summer streets in India came to my mind. Riding on a bike exploring the neighbourhood with my brother and sister for company in the early 1980s, I had forgotten the freedom and peace just being on a noiseless piece of engineering gives a person! All this happened as I went about my duties, on the ward, but part of me was also proud and thankful to TEAM GB in general and Victoria Pendleton in particular, for encouraging and inspiring me, a mother of 2, to take up cycling again, here in GB. Having participated in two Cycletta events myself, and with increasing confidence as I now cycle on the roads, I feel Cycletta has inspired not only me, but also many thousands of mums, grannies and teenagers alike to join the women's cycling revolution!
Why am I waxing eloquent about my love and passion of cycling, when I'm blogging about my daughter, you ask? The reason is simple, if a bit unusual. When S was four, her Granny (my MiL) brought her a little bicycle for her birthday. S loved a good set of wheels. As a four-year-old, she thought it unfair that her toddler sis gota ride while she walked alongside me. To her great frustration, she had grown too tall for the 'buggy board' I'd used on the back of her baby sister's stroller, to ferry her to nursery and back.
S had enjoyed bumming along on the trikes at her nursery the previous term, and we had hoped she would learn to love riding her bike. All kids do, I figured, and it would give her a bit of gentle exercise, which I often craved myself, owing to our unpredictable TBW: Typical British Weather. If this worked out, I reasoned, it would scatter her daredevil sense of bravado over a wider area of the neighbourhood as she took her energetic self outdoors with me on my own bike...
But it was a case of 'Man proposes, God disposes...'. Mind you, this was before her SN were formally acknowledged via a statement and well before B and MiL even began to comprehend there COULD be some truth to her Nursery School SENCO's recommendation that her School Placement works closely with us parents and investigates her Social Communication, Language & Gross and Fine Motor Skill Difficulties... It was simply too much to expect and dream on my part, I guess. Harder still for her,too. In spite of hours of careful and patient demos from me, and the training wheels still attached, she pedalled, furiously, backwards, rendering herself immobile and immensely frustrated. At our 'attempted rides' she sat on the bike, rigid with anger or pound her feet on the ground and bang her small, sensitive palms viciously on the handlebars yet refuse to get off the bike. In all, the agony I went through watching her helplessly locked in that state of extreme frustration was what put me off kids' bikes altogether.  In S' case, there is something to be said for consistency of behaviour. A pattern has emerged, which I can now clearly see, but at the time, it made me go numb with helpless worry and turned her into a chopper whose blades whirred furiously fast and dangerously close to my sanity. S has always gone from a difficult task=frustration=meltdown. any help proffered is often unwelcome and boy! does she tell me that!  She'll scream, cry and shout at me (or my husband) launching herself into a tizzy of frustration and a cesspool of deep anger...
But today is four-years-later... today is gloriously sunny, and I feel particularly optimistic! I will try today to take my (now) 8 year old (who has always had a love-hate relationships with all tasks involving balancing owing to her motor skills' difficulties) and attempt to get her and her little sister to start riding their little bike. At an appointment last month,her OT (Occupational Therapist) mentioned that if I was keen for her to balance on a bicycle and slowly get used to the idea of stability, (before she even learns to pedal,) I should take the pedals off the bike... something I'm going to try today!
So, whilst they eat their breakfast and change, I'd better get stuck in an sort out their bike, testing its road worthiness, and giving it some TLC via a can of WD 40!
Wish us luck!!