A day to Love Luton.

'Heavy rains and driving winds forecast for the weekend!' said the weather forecast on my iPhone. I was cycling back from a 12 hour shift at work and hoping to spend some quality time with my little family. We ate crisps and pop-corn and watched a DVD of THE CROODS, much to the children's glee. We had milkshake and chocolate buttons, and the girls showed me their pumpkins, carved with their father helping them. Later, he'd watched smilingly, as they painted the lanterns with red, gold, orange and blue. I cleared my dinner dishes away and we both watched the girls fall asleep with the film still running....Rani was the first to nod off!

My other-half peeped in, from the back garden window and we shared a laugh at how quickly the kids fall asleep when a film is on and its finally time to watch something they have always liked! I told him about the weather warnings on my BBC Weather App, and we debated the time the clocks would actually go back an hour to end the BST. I said it would be midnight on Sunday, a few hours later, while hubby said it should be on Monday at 0000Hrs... I checked my e-mails while he smoked outside in his shed, in the company of Blaze and Sam, our two German Shepherds who are always eager to play! After some simple conversation, we both fell asleep too, and I roused myself to find the clocks had automatically gone back!

Better still, my e-mail to the Love Luton Half-Marathon Organizers' volunteer Co-Ordinator had a reply! I was happy and relieved to note that I could bring my girls along to the Venue as I had signed up as a volunteer for the Love Luton half-marathon. At the last minute, early that week, I had shot off the mail to Ms Sinead, the Local Council Head of 'Environment and Regeneration' panicking that having the kids with me might not be allowed.... Her reassuring reply and suggestion that we all help at the last mile WATER STATION made me sleep easy. I told the kids in the morning, as their Daddy was getting ready for work, perhaps we could all go out and help the Race (as my girls called the Marathon!) Runners.

The next morning, after an extra hour in bed (thanks to the end of BST), the kids awoke easily, when I emerged from the shower, and Raj got read for work. We all said goodbye and the kids excitedly peppered their Dad's face with kisses and a quick hug, and we all left home before half-past Seven.
At the Venue for the event, the girls clutched my hand and their water bottles, as we looked for signage that would guide us to the Briefing location for the team of Volunteers. Since this was the first time we were volunteering at an event, we agreed to stay together and search together. There were hundreds of people with fluorescent jackets, emblazoned with logos for their groups and for a while, we felt lost....

Soon, we entered the building and were guided towards the Cafe Bar upstairs, where we would be briefed. I met and started talking to a Lady who was a seasoned runner, whilst the girls sat down and looked around...  but she'd had to pull out of the race when she had a fall whilst out on the circuit, and decided to volunteer instead. There were about 150 Volunteers that day and the Team briefing was followed by a ten-minute break for an egg and bacon roll for those who wanted to 'fuel' up for a big day!! I checked the route and found I and Angie, the Lady I was talking to earlier was at the same WATER STATION along the route. After the 'breakfast' (which my daughters ate in instalments, may I add!) two buses took us around and dropped off at our stations along the soon-to-be-active routes. It was close to about 09:00 AM when we reached the 12 Mile Water Station, with Angie and Paul (another seasoned runner who chose to volunteer this time) estimating the first runners to filter through after 11:00 AM.....

Initially, the kids were quiet, taking in their surroundings, although Shivangi made a lot of friends, saying, "Hello!" to others on the volunteers bus, whilst shy little Rani stood hugging me (there was no room on the bus to sit initially, as we were all packed in the buses!) and stole little smiles at me!! Angie and I stood together, near the front of the bus and listened to the other volunteers chat affably, some having arrived from all the way in Brighton. When I expressed my surprise at the long journey they'd made to volunteer, they burst into laughter and said, "Yeah! That's cuz you Luton people don't want to volunteer..!" I laughed back and said, we are a big Town but this is our first (of many to come, I hope!!) Half-Marathons, so we could use the expert help!!After we were dropped off, we took stock of the tables, bottles of water and cups left for us to set up the Water Station.... The girls sat on a nearby parapet and ate the remains of their Bacon rolls. Around half past ten, we saw the Marathon Marshalls on their bikes and Paul and Angie said we could get people trickling in within the hour. So we got busy setting up the water station and soon enough, we had half the table full of cups of water, and decided to stop for the time being.

The girls soon started talking to Angie and Paul, and told them about the time when they climbed up the Dunstable Downs from the bottom of the road, up the trail and to the top. Sometime after noon, the runners started coming through faster and closer, so as we grown ups set up the cups, the children ran to the roadside and tried to pass them on to the runners. A lot of times, we saw the cup grasped into their hands briefly, but the runners' pace meant that they had just a few sips of water in the cup. This gave us an idea.... we started taking the tops off the bottles and replacing them, just lightly twisted into place so that the runners could grab the bottles and run with them, as they drank. What invariably happened was that they threw the used cups off to the side of the pavement as they ran, so the kids, Paul and I helped by clearing up the area afterwards, picking up all the rubbish to make sure it did not end up in the little stream that runs along the road into Luton Town.

Sometime during the afternoon, a Herald and Post photographer took pictures of the kids giving water to the runners and even to this day, the girls remember the fun they had on that blustery October morning!! Rani says "I can't believe we've got our pictures in the paper, Mummy!" and that makes me smile inside. After the last runners were through, we all walked into town and took pictures with Angie, before she was picked up by her husband. Paul lived in Milton Keynes, so he took a bus from town to get home. As the kids gave them both goodbye hugs and high fives, I felt a sense of peace and happiness I cannot describe. Not only did Shiv behave fantastically well all day, she was involved and attentive and ready to help all day. We then walked into Mc Donald's and bought them both Happy Meals, before taking a bus back home after a brilliant day!!

The Little Magpie

Ever 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 with a great deal of accuracy. Chocolate, cheese, drinks and soap, water, washing-up liquid, cushions and clothes... nothing is safe from her when she gets into that mood.
It's almost as if I can see what, when and how she feels a certain way, but the WHY escapes me... Invariably, it is the 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, my approach to mayhem is 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!! 

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.

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

'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!

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....

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!)

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!

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...!