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 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....

Celebrating her smiles...

My eight-year-old never ceases to amaze me. With her vivid memory, her zest for life and her absolute, unadulterated love for people she likes and cares for! She often reaches out and caress little children tenderly, or holds her TA's hand and says something so totally, disarmingly simple and heartfelt, it makes my hear clench with joy. She strikes up a conversation as I wait in line at the tills at the shops, sayying "Hello," to perfect strangers with such a genuine, cheery smile on her face that even the most spectacularly serious sort of folk break into a grin and say 'Hello' back! S is very straightforward. She says things like, "This is my mummy...I am shopping with my mummy...", making those of us who are with her or talking to her, smile widely.

Lately, S has been going through what I can only describe as a 'dark phase of the moon'. she would scream and shout at me and other adults at school if she was asked to do something. She has recently resorted to punches and abuse directed at me when I say something to her. On one occassion, we were walking home together, and as usual, I ran through the drill, " let's look left, then right and then wait until it is ok to cross over the road." I was holding my younger daughter's hand and bent down to ask her if she agreed it was 'ok' to cross or not, suddenly, over her head I watched a white van approaching, and noticed the driver hesitate, as if unsure... Instinctively, I whipped my head around, and was horrified to see S prancing into the middle of the road, her naughty, defiant eyes teasing me...daring me. I rushed forward and tried to hold her hand and bring her back, but she kicked-off right there and then, making me feel as small as an ant..... When incidents like this occur, I try to put myself in her place and think of how she would need her mum to react... It takes a few deep breaths and a good deal of self-control (which I, sadly, somehow lack) to refrain from shouting at her and giving her a royal 'talking- to'... Its a constant process of learning to invoke my reserves of empathy and patience and unlearning expectations, rational thought and "Oh, she's just trying to spite me" kind of thoughts...
Today, after nearly a year of watching her temperament gradually change from sunny to surly, I was ecstatic to see the obvious change in her demeanour. She smiled and greeted her Paediatric Occupational Therapists- Kirstie and Sharon at her O T review this afternoon and giving Sharon a big hug, happily settled down to do the activities she was meant to do. K observed, assessed and for some activities, timed her making observations and chatting with me about how I feel things are getting along. We had this review nearly  4 months too late because of other events in our lives and I was secretly thankful they even considered seeing her today. 
K said she has made great progress, which, although not quite in line with S's age-expectations, is progress all the same..."you should be really happy" K told me as she finalised the discharge paperwork and shared her observations with me. I was! Ultimately, what made my day was the big hug and kisses she gave me, and the realisation that, for the day atleast, I would be there to pick her up from school!