Saturday, September 14, 2013

The Little Magpie

Every wonder how hard it is to follow the thought process of a child like mine!? I mean, if its about following the trail of destruction and messiness that she leaves in her wake, I can reconstruct her damage-inflicting spree of bored disdain. Chocolate, cheese, drinks and soap, water, washing-up liquid, cushions and clothes... nothing is safe from her when she gets into that mood.
It is the more subtle, quiet workings of her mind that flummox me. How do I 'train' myself to re-wind from an unexpected situation and conclude that she had a hand in the cookie-jar, so to speak??! Simply put, no evidence, no blame.... I always blame the stress factor in my own life on my inability to find things, and I have an appalling sense of recall. I put things in the same place for years, and if I change that place to render the article safe from my ever-evolving, curious child, I can never find it when I need things the most!

Last week, as I rushed around like a numbskull, after two 12-hour night shifts and trips to the School, shopping for groceries and trying to stay awake, I suddenly noticed (only when I needed them, to be honest) that somehow I'd managed to misplace or absently put away my house keys, bicycle keys and ALL the other keys that stayed in one loop...!  After nine hours of agonizingly going over every square inch of the house, retracing my steps hundreds of times and asking my 7 year old  (who had held them last of all), I was confused, upset and overwhelmed at my own incompetence. I blamed my absent mindedness and buried my disappointment under a frantic hunt for the lost item. Oblivious to the fact that S had simply left my home n bicycle keys on Thursday, behind her School-grown pot of coriander on the window sill, I hunted all over the damned house. I had to cancel an appointment I had volunteered to attend, and searched everywhere, muttering with barely-contained anger and a startled disbelief at the microscopic capabilities of my brain to short-circuit out of order at the slightest opportunity.

I am so well-versed with her nature and little habits to hold/ hoard stuff in her room that I meticulously searched it from wall to wall. Then,hoping she must have taken them to school, safe in her coat pocket I even rang them on the chance that they may be found by her Teacher but that was not the case. At the end of it all, after a whole day of searching till I'd exhausted myself mentally, they miraculously materialized when she was at the kitchen table having her tea with Dad n sis. It turned out that she had left them on the sill when she watched her bus pull up outside that morning.

Today, it was my wallet that went missing. I was frantic and had to cancel my Debit cards, and all that- only to come home at five and be told by R that ,"Mummy, I KNOW where your wallet is- S had it under her bed (!!??) " .I had been at work last night, and was unaware that she had sneaked it upstairs and hidden in the kids' toy box under the bed. R was searching for things to play with in the early morning when she found it. Being 7 yrs old herself, she forgot to mention S's hiding place as I readied them for School! I have a feeling my little Miss S was a MAGPIE in her previous incarnation!! 

Wednesday, August 21, 2013

Senses and Sensibilities

I don't know how to say this... or even if it's ok to do so. So, mindful of the diverse sensibilities and views of the readers here, I offer a blanket-apology to those who may be appalled or discomfited by this post. I, however, am not apologetic about the nature and content of this post, but rather for the unfortunate friction it might cause to those whom it might inadvertently offend.
I've had this experience for a long time, and am at my wits' end on how to tackle it, not only because of how vulnerable it may make us (my DD and myself) to judgement or ridicule but also how it might be perceived in general. I first noticed the signs when she was very little; barely a year old if I recall correctly. I instantly knew what it was, having been a kid myself once...but was nonetheless unsure... nonplussed even, of how to answer my vigilant, seen-it-all M-i-L's (we all lived together until last year) queries of " Does she have constipation??" or " Is she eating well? ...She looks as if she's having a fit..."
I am talking about a normal, harmless and totally natural phenomenon. I am referring to infantile (and/or subsequent) childhood masturbation. I have talked to my GP and faced SENCo's past and present when they threw this 'info' at me, saying, "...and she stiffens up, her ankles crossed, and lays there... lost in her own world". I've felt deeply hurt, sad and at times angry at the judgemental tone of someone who is in a position to do so much if only they would look at things in a more open way.
The best piece of advice I have received was from fellow-mumsnetters who said, (years ago, I may add) that it might be worthwhile to gently tell my dear girl that its okay to feel this way but this is something one does in private. I've have done so on many occasions with some degree of success. But, now that she is at the cusp of adolescence, I want to communicate so many ideas to my baby without making her feel as if this is something 'wrong' or unsavoury. 

Part of my victory has been the acceptance of her special needs from a very early stage- much before anyone-family or professionals- even imagined the possibility of her having any significant special needs. She looks like any other nine year old, and, on the surface, appears quite sociable and aware to make anyone stop and think. Call it the quirks of motherhood, or, as a Senior sister once put it, Good old maternal instinct- I totally 'get' her. Even if she has returned home from school and runs to me and gives me a sideways hug before pushing past me in her haste to get inside, I understand that she's possibly looking for 'Daddy' inside. I know she is tired and needs to just 'be' and recharge her batteries after a day of routine and creative pursuits, mild but well-supported task-oriented scholarliness. Sometimes, if my husband is still at work, she lingers outside... picking up a leaf on the ground or kicking at a pebble on the drive. Often, her anxiety is diffused when she sees her loving Daddy at home on his days off. Then, a great sense of excitement and fun, obedience and play ensues and my household is a typical haven of kid-induced activity.

She asks me as she gets off the bus- "Where's Daddy!?" if she has seen him at home on two of the previous weekdays, and is disappointed by my reply when I say he's at work. She takes a while to change her uniform, and is distracted if she's hungry. After an hour, she is fed, settled and either playing on her tablet or watching some TV (we try to stick to about an hour of TV at the most, on weekdays.) If I have occasion to enter the room, she is often lying down, watching TV, indulging in her exploration of her own body (rather like her sister, who sucks her thumb for comfort).To me, S is only doing what comes naturally to all of us; finding a ‘safe place’ to unwind and relax after a day of varying degrees of stimuli, demands and sensory overload. Her choice of activity may be unusual and different, her need to relax is not.

Perhaps her special needs make it easier for her to withdraw into herself… It could be that her awareness of her need to wind-down and finally be at peace is best realized in the safety and familiarity of our home. whatever it may be, I am deeply moved and thankful that she is safe, happy and unharmed. Just as her little sister sucks her thumb (she is 7 years old) or bites he nails depending on whether she is relaxed or anxious, s hasa way of relaxing that may involve rocking, listening to music, talking to herself, or some harmless, innocent self-gratification.

I have noted that things have reached a crescendo in the past two weeks and it might just be her way of coping with a stressful day and relaxing in the only safe place she knows- home. School haven't mentioned anything related to the self-stimulation in the past three years and understandably, CAMHS was unsure about my 'diagnosis' of the activity per se. When I mentioned talking to her Paeds, a lady doc who saw it in her clinic when she was examining S and her lower limbs for a possible motor-coordination difficulty, CAMHS was suggesting some 'distraction' tactics which have- on occasion- worked fairly well. When the CAMHS Nurse suggested I offer to paint her nails or rub some fragranced hand-lotion into her hands, I tried the latter and was glad when it worked. The key was discovering an alternative means of relaxation; the gentler the better. I was not surprised in the least and sent the dear Lady who patiently sat and listened to me this week my message of joyous gratitude. The nurse, in my opinion, was far, far more helpful than the GP, SENCO or Paedriatician had ever been.

My deepest dilemma is that as she matures physically there will come a time when I will need to address the delicate subject of ‘societal perception’ of masturbation. Its cultural, religious or physical references, the conclusions drawn and the implied sexuality alluded to- at this, the most natural of acts by a child on the brink of self-exploration and discovery. More worryingly, in a cultural climate as fraught as India with her diverse, at times ill-informed malevolently patriarchal society, how do I protect my 9 year old with GDD (Global Developmental Delay) and Echolalia, and the developmental maturity of a four-five year old. How do I protect her from people who might take her behaviour to be something it most definitely is not?? How do I ensure the safety and innocence of my achingly-sweet child??
This article in a medical journal is path breaking. It corroborates my point of view and gently reprimands me for being militant in my intensity to ‘intervene’ and offers, instead, to redirect the focus elsewhere. Not on the act per se, not even on the propriety of it but on that which is sought. A feeling of safe, calm relaxation. As an avid googleer, my uneasy mind was quelled by suggestions like this one-
We suggest a few practical points for management of masturbatory behavior:

Videotape the event in question. Not only will this facilitate diagnosis, but viewing it with the parents can help them realize that it is not a life-threatening event.

Help parents change their view of the child’s behavior as a disease. This is a normal behavior, and parents should view it as a harmless, nonpainful habit.

Scolding or threatening the child is not appropriate. Efforts to stop the behavior forcefully will only reinforce it and possibly instill a sense of shame or wrong-doing as the child gets older.

Redirection can be helpful. Engaging the child’s interest in other activities or toys can draw her attention away from the behavior.

As the child gets older, a milestone can be defined to end the behavior, at least in public. For instance, 1 parent used the child’s fourth birthday as an opportunity to tell the child, “Now you’re 4 and a big girl. Big girls don’t have to use diapers anymore. Big girls also don’t do ‘stretchies’ outside of the house. Let’s try to do our ‘stretchies’ at home.”

Some parents can be offended by a discussion of masturbation with regard to their child. We sometimes use the term “gratification behavior” instead of masturbation when discussing this behavior with parents.

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.

Sunday, December 16, 2012

A Loving Prayer for my newborn Niece

My Dearest Brother Digvijay and Prachi 

I was thinking of you both for a lot many days before your baby arrived as I waited for the news! On my way to work and back, I waited and then some more!!  So here is something I've been thinking, and mulling and sort-of wish you too- Now that she's finally here, its here for you, with my prayers and best wishes to your little FAMILY!!

You met one day, 
By the good Lord's will,
and promptly fell in love,
Then marriage vows united you, 
with blessings from above.

The years roll by,
with life on a high,
and loved ones watch and cheer,
you live in joy and love complete, 
now your little darling is here!!

So, wish you wonderful years ahead
and I want to say just this,
May His blessings always shower you all
with Love and Care and Bliss,
and as you gaze upon her face,
and hold her close to your heart,
she fills your lives with amazing Grace,
and this is just a start!!

'Life is Love' and no one else 
can show us this so clearly,
as this little gift of Love in your arms,
that you both hold so dearly!!
God bless this little one,
as she fills your eyes with tears of merry, joyful laughter,
this angelic bundle of delight, your precious little daughter!!

- (this is something I wrote last night for you both)

May you all have a life full of total Joy...she will soon begin to grow and make your hearts just glow with pride at each and every moment! I Pray that all your moments are filled with this little very REAL DREAM!! She will smile, and yawn, cry or sneeze, roll and then crawl, and walk holding your hands,and give you all her love making you feel like the luckiest people in the world!! 

You gaze at the little miracle so perfectly formed, and instantly fall in love again!! Her tiny, perfect hands and toes, her little eyes and downy hair, her baby-smell, her sleepy face, her cuddly, snuggly warmth... As you hold her close and stroke her face, remember how much you were loved by our parents too, and now its your turn- to give it back to the Universe and especially to the proud grandparents!! 
So cherish her, love and share the miracle of parenthood, in all its beauteous glory...
There's nothing quit like LOVE, when it comes to life's story!
I'm sure, in time, she will learn all about life from two of the most loving, adventurous, wise and special parents in the world, YOU TWO! For now, just enjoy her and experience each second with this most special blessing from God-and reflect on how beautiful it is to just BE PARENTS!!! 
I wish you Love and may God bless her, my little niece...!! I wish I were there, to see her now, but I know in my heart it will be soon....

-with all my love,
yours, Ruch

Wednesday, October 10, 2012

'Monster-face' runs a race!

(For the past few weeks, we've been reading Winnie-the-Pooh books at bedtime, and Pooh bear's observations, simple truths and lovely tales about him trying to make up rhymes and little songs inspired the title!

The best thing happened this Sunday- Shivangi (with Rani n me) had a day out and SHE won an unexpected medal for participating in the fundraising race! I'd say good day, but it was good in bits and great in places and not-so-good at times, you know!?.....but in the end, she learned to value herself and believe in me- just a little bit, I guess! Feel so grateful for that... Thank you, L & D Hospital fundraising team!

Yesterday, S, R and I went along to the L & D Hospital NICU fundraiser run in our town. (I had signed up for the 2K run along side my 8 year-old Shivangi). Rani was not too keen on the 'running' bit, and was content to stay with a friend and watch us from the sidelines instead. By the time I gave R a kiss and asked her "Are you sure!!?" and watched her nod, then turned around to face S I discovered she was already twenty feet away, and running off along the course!
On the run!
I caught up with her and we settled into a rhythm for about a hundred metres, when she started shouting at me, "STOP, Mummy, STOP, STOP...." I immediately stopped, and she said "don't run, we will walk now"... It would have been disastrous to argue or coax her, so I smiled at her and we took off at a trot, taking in the footballers practising in the field to the right and kept going...! 4 little girls and their families were also running along, as was a toddler perched on her Daddy's shoulders! Eventually, we made it to the last Kilo-meter, and the jolly L & D volunteers cheered S. She started running again, to my utter disbelief! We ran/walked and chatted together, me trying to keep her from pushing herself too far- I know that once that happens, a screaming rage and tears are just around the corner... S coped well, in all, but did not want me to run with her, for some reason, so I trotted behind her!
As soon as she was within sight of the finish line, she ran off again, and beamed and smiled a 100 Watt smile which made me feel elated!
Home again!
The medal and goody bag she got only served to make her more joyous, and she hugged her little sis Rani delightedly. Posing for pics, she made my heart swell with joy and love, and it was a terrific fundraiser for the NICU where she had spent the first 5 days of her life...! ( more about that here)

Posing with sis!

Monday, October 8, 2012

A Special School

Not so long ago, (in the first week of September in fact) my exuberant little 8 year-old started a new chapter in her life. Actually, make that OUR lives. She started attending her new school- a Special School for children with severe, complex behavioural and learning difficulties... Her old school, which her little sister, R (6yrs) still attends, is still linked to her in my heart. Her teachers, friends, other parents, all ask me how she is doing in her new school, and how she likes it there...and each day I tell them that she's settling down, loves school and falls asleep on the bus ( I wake her up, every school-day morning at 0630...) R's new class is right next to S's year 3 classroom from July. In walking along the corridors, with R by my side, I recollect the pain and unshed tears I buried inside me each day, as I resolutely removed myself from S and her class. She would be fine on some days, and absolutely livid or tearful on others, depending on how she felt that morning....The class teacher and T.As always reassured me that she was usually fine a few moments after I left and carried on. Sometimes, this knowledge was the only string holding me together.

Nonetheless, since S has started attending a Maintained Special School in our town things have slowly but surely changed for the better. Of course, we still have those off days when she is screaming in fury or frustration and I am bloody ready to tear my hair out... But I am learning to cope with her mood swings, her hatred/love for me and her need to do things her way....My husband helps me understand her somewhat better, and I dare say I feel horribly envious of the splendid way in which he manages her behaviour... ASD wise, her journey is smoother, because of the specialist input of her teachers and T.As at her new school. I guess the best example is she's amongst children who share some of her specific special needs and the adults in the School are trained and experienced enough to cope, help and support them in their journey to learn and grow in their life. The new school is well-equipped to handle her needs, guide and support her learning and help her become a whole, rounded person despite her difficulties.

The one thing that gives me untold peace is the fact that she is settled there; happy and already making friends again. After years of struggle by her splendid Primary (mainstream) School, and us parents, it was a sigh... Yet, to this day, if you were to ask me if my child has ASD I would have to honestly say "I DON'T KNOW." Not because I doubt the it, but because there has been no formal diagnosis, not yet, anyway. Her Paediatrician has always maintained that she "May present with a dyslexic profile, in future" or " Could be on the spectrum" which is kind of open-ended; neither here nor there...
It was in a chance meeting with her Paediatrician, (again, at the hospital where I work that I learned about a review of S and her difficulties) arranged by the Ed Psych (Educational Psychology) team to take place in the near future. She asked me how S was doing and I told her about the new school S is at, for children with behavioural and learning difficulties. The doctor informed me that there would be a review arranged for S and her needs, looking to assess her needs in a measurable and identifiable manner. She mentioned the ADOS (Autism Diagnostic Observation Schedule) test and I made a mental note of the same. (read more about ADOS here) The assessment is timely and yet long overdue at the same time...

All this, again, would not have happened if it were not for some very dedicated, helpful adults- the Family Worker (Mrs A), her teachers' inputs and help and the SENCO at her previous Mainstream Primary who included my letter to the SENAT definitely spurred things on. It is all I needed, someone to listen and take note of things from my perspective.... It has taken my worries, my tears, my stress and my pain ,and made it all worthwhile- because, finally, someone is able to reach out to her and help her learn at her level, at HER pace. She has done well because of the patience, perseverance and persistence of her T.A's over the last few years. At her Mainstream Primary, the class teachers and T.As were terrific! Always supporting her to the requisite degree- not letting her feel left-out, yet not making her work beyond her potential.... They shared a bond far beyond the calling of a teacher and a pupil. Shivangi, in her inimitable way, has touched their hearts... This morning, I met her old T.A in the school corridor after dropping Rani to her classroom. We exchanged a hug, and she asked after Shivangi's well-being. It was a moment when I realised how deeply S has affected the lives of all of us- her Parents, her teachers, her friends...even strangers!

On the UP side, just a month or so after joining the New School, she visited Ashridge Woods on a School Trip and loved it! We talked about it the next morning (I am at work till 2200 each day of the week, barring some Saturdays and Tuesdays) and she spoke about playing on the 'Bumpy Hills' when her teacher let go of her hand briefly, and brushed aside my concern for her nettle-scratched hand with endearing 'grown-up' ness..." Its FINE, Mummy... I didn't even cry!" My little Ms Tornado is finding her feet now..!
But, there is a DOWN side to it too... now that S has settled in to her new school, she has begun to 'copy' behaviour that she sees around her. Considering that some of the children there have developed their own 'coping' mechanisms and have a varying degree of special needs, I find it heartbreaking and also a bit insensitive on S's part that she shows no remorse for her own behaviour. (i.e, when she copies other children and their behaviour). Should I put it down to her 'echolalia'  or mimicking others? Is that good, bad, or very bad!? How do I get through to her?? She nods and smiles when I tell her not to copy other children and their behaviour, as they may have learned to cope in that particular manner. She will sometimes repeat, "I must not do that", "I must not copy", "It is BAD.." but she does it nonetheless.... A teacher and one of my friends on an FB group 'different for girls?' (you know who you are!) suggested I use stickers or cards to remind her so as to not nag her all the time... maybe use simple PECS symbols or pictures etc...A similar situation arose in her second week at her new school (read more on my P.E.C.S: Our version PAGE)

In the last six weeks, she has had fuss-free school transport (she's being picked-up and dropped off at the doorstep, everyday as we live more than 4 miles away from the School), healthy school meals (which we can afford now thanks to my extra working hours' regulations) and is enjoying her learning, participating in the school routine which is specifically tailored to suit children with severe or complex needs, like herself. Gone are the days of struggling to get her into her class and watching her scream and cry as she hated letting me go away, which I did eventually, with a heavy heart. Now, she hops on the bus and turns around with the sweetest of smiles, blowing me kisses while I do the same, as the Bus slowly pulls away.....The last thought on my mind as she slowly vanishes into the distance, is of gratitude to God for giving me such a beautiful child who teaches me something about myself everyday...

"Its Friday, it's Friday, the weekend starts on Friday..." sang my little girl last weekend... now, when I drop off/ pick up my littlest to her class, the corridors of the school, the people, the T.As all remind me of her sister's absence... but I know she is happy in the school she's now attending....

Saturday, September 15, 2012

Rough and tumble: A & E

It is a well-known fact that children are accident prone. More often than not they fall, bump their head, scrape their face, hands or knees... Or worse still, jump right into danger when their parent or another responsible adult takes their eyes off them for a few minutes. Lulled into a momentary false sense of ( the girls') safety, H tried to multi-task and clean his car while the girls were in the trampoline. Unwatched for a few minutes, they jumped, swung around on the nets and S promptly fell out landing on the hard paved patio. That she did not hit her head and was saved by virtue of her leg caught up in the safety net was nothing short of a lucky miracle. Being as it was, she hurt her arm and the impact made her whole wrist, palm and arm seize up in pain.

The first thing I notice when I get home from work is the frown on her tear-stained face.... She reacts to my "Hello beta, how was your day!?" with a grunt and a rough swipe. S is sitting near her sister in bed, watching a kiddie-movie. It is around 22:00 on one of the last few days of the Summer Holidays... Rani fills me in on the details of her injury. Soon, H walks into the room and we talk about it, briefly. I save my questions and concern for later.... I've learnt from my past experiences with S- if we downplay any minor injuries she is likely to quit making a big fuss over it. Alarm bells, however, ring in my head as I watch her hold her hand partly folded into a loose fist. Suddenly, It doesn't seem all that minor an injury to me. Quietly, I leave the room as H and I take our conversation into our bedroom. I ask him, seriously, if he would take us to A & E??! He says it seems to be better now, and suggests we let her rest tonight, with the possibility of taking her there in the morning. Since I was not present when she sustained the fall, I decide to take his advice and let it rest for a day...

The next morning, 01st Sept. 2012, a Saturday dawns sunny and bright. As the kids awaken and go through their morning routine, I watch S' hand closely for any tell-tale signs of swelling- the indications a fracture. Aside from some screaming and shouting at me (which is the norm, rather than an exception) when I attempt to help her change her clothes, she retains her sour mood- brightening up only around her Dad when he wakes up. I notice her pain, the way she is holding her hand.... and I feel worried, anxious and perplexed at S' behaviour towards me- best described as indifferent, with spurts of clinging shower-of-love moments. I hug her back when she demands it, feeling drained and empty inside.... worried and stressed no end.
As I reluctantly get ready for work, I tell H we should take her into A & E and get her hand examined, as she was still complaining of a lot of pain there. He finally agrees to drop us off and pick us up if we're seen before I go onto my Ward adn start work. We make it there before noon! We're seen by the Lady atthe reception, and I tell her my concerns, she notes down the history, and nature of the injury, and directs us to take a seat. S fidgets and is jumpy, but all I can see is the way her hand and arm look and feel. she does not let me touch her arm at all. After about half an hour's wait, she is shown into the Paediatric A & E area, where she is instantly absorbed by the toys and games. A young nurse with a cheerful smile calls out her name and she shuffles to her feet, smiling shyly. A senior nurse-practitioner examines her arm and hand asking her about the pain and talking to me about the nature of the injury. She asks S about the fall, the pain and where it hurts. S points out the palm of her hand and the area around her wrist. The nurse says it is probably nothing major, but agrees that an X-Ray will rule-out a hidden injury, and given S' ASD, I am relieved at her decision.
After an X-Ray request has been filed, we are shown to the Imaging Dept. via A & E Majors. S wants to touch everything and doesn't want to hold my hand at all. In a few minutes, we're standing at the Imaging Reception, looking into an unmanned reception window, waiting. I glance down at S and smile reassuringly, and she smiles back, her little face barely clearing the window base. she looks like a disembodied cherub-face, floating curiously...! A young man with thin features and blond hair shows up and asks me, " Yes, May I help you?" , and I give him our family name. " Can you spell the name for me please?". S-H-I-.... I begin, and he types it down quickly, looking for the request. " There's nothing on the system, yet," he says, " would you and S like to wait here for a few minutes?" "That's fine, " I say, when S pipes up at the young lad, surprising me. " What is your name?"... " Luke, " he says, smiling at her for the second time, " My name is Luke"... " Hello, Luke!" S says to him, as I look down at her in awe of her friendly, open alter-ego! She's full of surprises at times and sometimes oh-so-predictable... S sits down and points at a chair a little further away from the one she's occupying. I sit down in it, obediently, eyes dancing with a hidden smile. s giggles, and jumps into the seat next to me. We play the "silent-chatter" game, where S whispers loudly and I whisper back in a whisper....talking about anything that interests her. The waiting area is empty, so she does not cause me any embarrassment by asking questions about people with the inherent frankness of childhood.

About five minutes later, a Radiographer calls out her name and we make our way down to meet her. Ten more minutes and we exit the X-Ray room- S grinning from ear to ear, showing off her sticker! On our ay out to Paeds again, we walk past Luke, pushing a portable X-Ray machine in from Majors. " Bye, Luke", S pipes up, making him smile in surprise. I like the way he smiles at her, genuinely touched that she remembered his name! That's my S for you, in a nutshell. She may not remember which shoe goes on which foot, or whether or not her vest or T-shirt is on the right way around, but she never forgets people's names, things they like and how they made her feel...It took us another couple of visits to A & E to sort our her arm, but eventually, I think, I learned something from my daughter that day.

About how pain is a state of mind.
What matters is that one trusts the judgement of an expert, but also makes allowances for the little niggling 'voice' inside.
How a kid will be a kid. Always.

The second visit came on Tuesday, the 4th of Sept. This was the day she had cried a lot, screaming in pain when trying to put on her top, and jumper. Soon, her screaming escalated and became more of an angry outburst, when I tried to help her. In the evening, as soon as she returned from school, we walked over to see our GP, and he said we should go down to A & E again, as the top of her arm was tender and seemed to be causing her pain. The way she held her arm by her side also made me worried. We made our way down, H's uncle dropping us off at the entrance, and we walked in again. The nurse listened to my concern, and referred S to the Paediatrician. The good doctor examined her after a half an hour wait. S was absorbed in the games and toys, and I, in watching her. He said he was reluctant to X-Ray the upper arm cos the hand had been fine, and it was probably a sore muscle. They gave her some Ibuprofen and Paracetamol, and after another half-an-hour, they saw her again. This time, when the doctor asked her if she had any pain, she said, " No." He spoke to me about bringing her in in case the pain worsened, but sent us off with the two painkillers. S was happy enough, and when I told her to go say thank you to the nurse and doctor, she gave them both a big smile and did as she was told. The doctor took her hand and said, " you're welcome, S!" and brought her to the linen room, where they had a box full of teddy bears. He invited S to select one to take home,  and she picked one dressed in her favourite colour- green.

S outside the Hospital, waiting to be picked up.
Post Script: Excerpt from my diary- 
 Have returned from our THIRD trip to A & E... half an hour ago... Its now 2304 Hrs... girls asleep- Raj just managed to put the girls to bed... The A & E sister said it was probably nothing, and when I insisted she was in pain for a couple of days, she thought it was best to X-Ray the shoulder. It turned out to be a fractured humerus.... They gave her a sling and a morning 'fracture clinic' appt for tmrw. Thank God, its not major, but I felt like a fool cos no one would believe me. Hubby stood by me and came along, so that was good... but he also told the nurse-in-charge, about our reason for visit being  ".... my wife, here is worried about my daughter's arm now..." She will be seen by the Orthopaedic doctor tomorrow. I guess if the doc yesterday would have requested an X-ray it would have been picked up then, but its S we're talking about! She thinks everything's a lark!!
Kids fed, watered and tucked into bed. S' Painkillers given. Fast asleep now... A & E staff were brilliant!!! 100% dedicated people! ( Working round the clock, without a break on 12 hour-shifts is no mean feat! SALUT!)

Sunday, August 19, 2012

One fine day...

This month, I began to do my first early shifts in over four years (Early Shifts start at 0700 and finish at 1515) and they went well...  I do not know if it was the summery haze, gentle breeze or the bright sunshine, but it definitely helped lift my mood as I cycled home in the afternoon.. There was the prospect of  a nice lunch n dinner for B (my husband), and a walk in the park with my two daughters featuring on my 'yet to-do' list. Returning home, I found the kids upstairs with B, enjoying a 'scary' movie. On the kitchen table, Rani, my youngest,  had left a couple of pictures she drew that morning, one for her Dad,  (image below) who she adores and obeys without question.

R's drawing for her Daddy dearest!
B has a way with them, which I try to observe, now that we have more time together as a foursome. Earlier, he would return from work exhausted, and find the kids in bed already. He would have to restrict his cuddles and loving kisses so as to not wake them up (S is a really light sleeper; R is so much better) But now that he's temporarily off work and in-between jobs, he is finally getting to spend a lot more time with the girls. B's love for them manifests in the way he looks after them, looks AT them and understands and disciplines them. (Case in point- as he cleans up/hoovers/organizes things around our home he has an army of 2 'foot-soldiers'  dusting, cleaning or helping him in his DIY activities etc.)
Now, he even has them wiping down their table after a kiddie meal/treat, much to my amazement!! As I cycled to TESCO to buy some Lunch and picnic treats (for later in the week), I thought about whether the kids really cared about 'going out and doing things' as a family, or, like B himself, they are simply content to play and stay at home?? Was it me who needed to get out, and if so, shouldn't I just go ride my bike for as long as I was tired, rather than persuade all my family to get up and get going when they'd rather not? The difficulty of the decision lies in the varying attitudes of my kids. S, like B is content to do whatever it is he's doing. If he lays down on the bed, munching crisps and watching an old film, she will be more than happy to. R, on the other hand, has inherited my restless spirit... She likes to go out to the park, meet her girlfriends for a few hours (where they hug each other gleefully as if they haven't seen each other in years while us Mums make small talk.)
I cooked, cleared the battle-zone a.k.a kitchen and summoned the girls to dinner. After dinner, I got the kids ready to go to the park. Easy enough, when it comes to R, who is compliant and 'understands' when I say, " Baby, you'll need a sun-hat and can I comb your hair ( more like a 'hornet's nest')  please??!" She sits patiently as I attempt to tame her hip-length tresses using tangle-free (which, incidentally was a great discovery, as it helps overcome the morning school-rush-time tantrums by S), a wide-toothed comb and bands...
S, on the other hand, my delightfully notorious, challenge of a daughter, predictably enough, screamed at the sight of the comb. Okay, I told myself, I can do this! I tried to reason, cajole and persuade her- following it up by an ultimatum "we're NOT going until you let me sort out your hair, dear" and "Please let me, at least, comb it out and give you a hair-band". WRONG MOVE, Ruchita, I told myself... Still, nothing worked. She dug her heels in, and I planted my feet firmly. Face-Off. big time, if you ask me. Inwardly, I was not sure she would comply, outwardly, I put on a brave face- my 'I-know-how-you-feel-but-this-is-non negotiable' face. Minutes ticked by....then she, defiantly, took her wheelie-scooter thing outside the door, and I followed her out and said "we're not going if you don't help me". some of you may be thinking, 'why all the fuss, let her go as she is' but it's not that easy to watch my beautiful, energetic autistic daughter get more than her share of 'looks' from others in the park- (kids, parents etc) simply because she looked like she'd been dragged through the hedge. Backwards.
The last straw came when she lashed out at me, verbally, shouting at me and using the f-word. I told her to go inside and wait for me to get back. I made it clear to her that she was to go "inside and stay with Daddy", who I rang up, half-a-minute later, appraising him of the new situation. He said he was fine, and did talk to her and asked her what she had done wrong? She told him she'd said the 'F' word to me.... They talked about it, and she promised him she would not do that again. After an hour and a half in the park, Rani and I came back home. S had, I hope, learned her lesson. R had a good time. I was totally miserable....  but then, that's life!

Friday, August 10, 2012

Sleep Wars...and other stories.

Sleep. That one restful, peaceful, quiet place that the body needs to go, to rejuvenate and refresh itself. If I speak for myself, sleep had never been an issue, until I became a mother, that is... As a kid, I used to sleep fitfully, from the moment my Ba's (Granny's) stories began to weave a wonderful blanket of images, draping her stories over my psyche, lulling me to a dreamy, secure safe place. Sleep came wafting in, riding the waves of tiredness mingled with excitement..Of listening to another one of Ba's stories and breathing in the smell of her cotton saree as I snuggled close to her, my face pressed into her warm embrace....She had a loving, sweet way of caressing my hair which actually felt like something between a tickle and a scratch, but put me to a peaceful, heavenly sleep! The summer holidays brought us cousins together, and excitement banished all sleep from our eyes! We would spend hours, talking, telling stories and playing games like UNO... (tales-of-a-bedtime-story).
Many moons later, as a young adult at University, I realised another universal truth: Sleep was good, but, no sleep was even better! I revelled in the drawings and inking I accomplished after the rest of the family was asleep, surviving on an unhealthy dose of caffeine, crisps and rock music. Ba would worry, sometimes dropping in on me through the night, to see if I was actually awake, or had nodded-off...

 As a mother, I tried (in vain) to do the whole "Sleep , my little angel, I'll watch over you, awake.." kind of thing- as glorified in Indian films over the ages. Only too soon, I realized that a sleepy, cranky mother is no good to a toddler and promptly took some steps towards a routine, regular bedtime.After the kids came along, however, sleep has been snatchy, elusive and rather too sonorous for my own liking!  As maternal instincts kicked in, exhaustion was relegated to second place as my duties as a mother came first. As I tried to wake up and focus, I'd be telling myself- 'get up, you blob, S is crying... she's probably hungry/wet/cold or bored'.
Even as a baby, S had a way of snuggling-nuzzling a bare arm, and fell asleep holding on to us. It was all very well for as long as she were little, settling in our bed next to us, and my husband was happy as can be... Things became rather complicated when my second Daughter was born 19 months after S. So we finally got the Cot hitched up in our room, and got the little baby into it. S was 20 months old by then and slept with her grandma till we moved into our own home , a few weeks before S turned two. S hated the new-fangled idea I had about them both sleeping in one room. MiL bought a lovely bunk bed for the girls, and S could sleep in it whilst the baby slept in a cot adjacent to the bed. To us, it was obvious she was beyond tired and needed to sleep.  But S had other ideas... she was ANGRY. Soon, to my surprise (although the predominant emotion was dismay and heartache at the state she was in...) she pulled herself up to stand and cried and cried in protest. Did I mention that she never stood up before, with or without support!?
Sleep and S have always had a love-hate relationship. although she loves her sleep and hates getting up in the morning. School mornings are a real pain. as is getting her to wake up. It may be about her (She's definitely NOT a morning kiddo), or may be due to her behaviour difficulties but she equally strongly dislikes being put to sleep.
At six years old, she had progressed from sleeping only next to me/my husband/ MiL, to persuading R, her little sis, to sleep with her in the bunk-bed. Sometimes, as kids often do, R uses this leverage to get S to toe her line and do things she wants S to do for her... Now, after a few years' struggles and discipline, S manages to sleep throughout the night, on most nights, and only appears at my bedside if she is awake in the wee hours of the morning, when she has been woken up by a full bladder, or worse, a wet bed...Or, like yesterday night, finds me awake in bed, and asks me, "Mummy, can you sleep with me??!"

Rather hard to say no, if you ask me, for two reasons:
If I were to say NO, S would have a meltdown/cry/scream then and there, waking up her father in the process.
If that didn't happen, she would climb into bed with us and slowly nudge me away, thereby taking up my whole bed-space till I was forced to get up and sleep in her room, while she happily snuggled up to her Daddy.

See what I mean!!?? S is cleverer beyond my comprehension, but also stubborn beyond endurance...
Either way, I now sleep less and less, from the sheer stress of it all, only managing to nod-off properly:
A) In the early hours of the morning,
B) While I'm watching T.V,
or C) When my husband decides to give me a peaceful night, putting up with the girls in our bed, and letting me get some sleep in theirs.

Sleep, for our lot at least, is elusive, ever-new and gratefully received! If the body is tired, it will sleep. Period. So, my aim these holidays, on the days I am not working, is to get the girls as tired as possible! We walk to the park, or they ride their scooties, and I let them loose, keeping a hawk-like eye on S so other innocent, unsuspecting kids are not put at risk by her swinging hand and swinging mood... This is not to say that she will attack random kids but with her blurring the lines of acceptable social interactions, she sometimes makes other kids feel threatened. Typically, she will pat a kid on the head, or touch their cheek, face or smile right in front of their noses. They react by telling her to leave them alone. She gets upset and takes a swipe or turns away. I always look out for her so I can help her keep social interaction as open-ended as possible... Difficult, but not impossible. Especially in the play-area is close to home. Disputes can be resolved by ultimately walking off homewards, and she follows, screaming and shouting abuses, but calms down once there is no negative reaction from my side. I just tell myself it must be 10 times harder, if not more, for her than it is for me. Keeps things in perspective, if you ask me....But, that's another story...!