Friday, 14 October 2011

G - The Bigger Picture

We always had a feeling that there was something....a gut feeling really, but something just a little bit different about G's reactions to the world around him. Ok so no first-time parents really know what on earth they're doing with their new little bundles of joy but some do at least give out the semblance of coping! Not us. Even back then, it felt like everything G did was sort of normal baby stuff - but "normal on steroids"! He would only sleep for a matter of minutes and would wake, screaming and colicky and inconsolable. It took 10 months and a professional Sleep Clinic, (who almost gave up on him) to stretch those periods of snoozing to a delicious few hours. We were not fun people to have around as G cried almost constantly - I remember a roomful of NCT mums silently applauding when G had - for one time only - nodded off in his little seat for 10 minutes. Cooing strangers who thrust their faces into his pram would be rewarded with terrified screaming that would reverberate off the walls the rest of our trip - I used to pretend I was deaf when the inevitable supermarket granny would ask if he was a "good" baby (WTF?!) He walked as early as he damn well could - driven, I think, by the desire to get away from strangers.

Me and Dave were utterly knackered back then. I felt like the worst type of failure for not being able to make my baby happy. I didn't want a perfect baby - I just wanted my baby to be contented. We spent a lot of time, reading stuff, searching for answers and trying out different methods of "soothing your baby". Nothing really worked. G just wasn't comfortable in the world and that was that.

He was, however, the most intensely loving little chap - with his direct family.

When G was 2, I took him to the doctor about yet another ear infection and the doctor amazed me by commenting that his speech was delayed. To me he was the chattiest, brightest toddler around. I just hadn't realised that no one else could actually understand his hundreds of words. He hated unknown children and would literally throw himself off the top of the slide in the playground if another kid followed him up the steps. But, boy did that kid have a good memory...! The Health Visitor was duly sent round and took one look at the terrified, shaking child who was hiding under his bed to avoid her, and told me that my son might have Autism.

A bout of Speech Therapy sorted out his Swahili-type pronunciation and friends and family assured us that all the other stuff was "just normal kid behaviour". G seemed happier with his clearer communication skills and started at the local Montessori and the Autism word was buried. That was also the time when J had started having seizures and we had entered the world of blue lights and hospitals and diagnoses with him. As much as I hate to admit it, this did somewhat eclipse any worries that we had about G at the time.

Every few months, though, G would have a few weeks of really struggling with life - almost a cyclical thing. He'd be "fine" for a 3months and then have six weeks of being all out of kilter. He had friends, but didn't always keep them for long. He had intensely strong interests in things and almost seemed addicted to collecting things or information about whatever the interest of the moment was. He was massively over-sensitive to tastes and smells. He cried a lot at school but was also bright, quirky, chatty, hilariously funny, loving (almost overwhelmingly sometimes). Ach - he was ok generally but there was just that something - that niggly thinggymabobble that me and Dave just couldn't quite put our fingers on. When he was happy he was ECSTATIC! When he was sad he was MISERABLE and when he was angry he was LIVID! The emotional settings were all too high or too low. There were few grey areas. Impulsivity was huge, and shouting - his and inevitably ours (terrible terrible mother, that I am) - was a common occurrence. Oh and did I mention his reaction to change...?

We were frequently called into the Headmistress's office about the crying and now and again, about lashing out at other kids. She listened to our concerns about G's behaviour at home but told us that "There's nothing wrong with G when he's at school. He's very clever, he's very chatty and it's obviously the fact that his brother is getting all the attention that's making him feel sad". Hmm. Yes - we have a name for that woman that isn't overly polite...! Still, he continued to fall out of the school gates at the end of the day in floods of tears, even though I was told he was "fine" during the day.

Junior school and more cycles of "darkness" and "light" for G - generally a cool, bright, clever, popular kid. The interest in the history of video gaming intensified. He still refused point blank to go to birthday parties or play football or go to any after-school clubs at all. Now and again I'd enlist him in some activity and force him to go (God, sometimes even bribe him to go!). He'd always love it for the first two sessions and then refuse to go EVER again. Sigh. Two days out of 5, G would come out of school in tears, having been "fine" during the day. But he was ok. It was only me and Dave that had concerns. It was all "normal kid behaviour". The school staff continued to infer that I was an over-anxious mother, desperate to label her child.

Now, I don't think either Dave or me are neurotic types. We don't strive for that perfection in our kids that some parents find so crucial. We're good with "quirky". We're probably dissed for our lax attitudes for some aspects of parenting - tennis clubs and scholarships to the wankier schools in our area were never on the menu. We like our kids for who they are and want them to lead happy lives. And that's the crux of it. Something has been stopping G from being as happy as he could be. We never felt that there was something "wrong" with him - something that needed "fixing". We just wanted to understand WHO HE IS and to help him reach for the stars.

I wrote about our quest to help G in a previous post - Labelled with Love. And labelled he has been. Aspergers Syndrome. I'm going to write more about what this means and what this has changed in my next post, but I don't see G as "Labelled". I just think that a light has been shone onto his way of thinking about and perceiving the world. I'm not sad about it. To be honest, it's a relief after 10 years of knowing but not knowing. My main emotion, however, is pride.

4 comments:

Rachel said...

Your post has brought tears to my eyes. My son has Aspergers too - and I feel exactly the same way as you. There IS nothing wrong with him and without his AS, he wouldn't be the wonderful person he is.

Shrinky said...

First, let me say as I know you are a brilliant, brilliant person, it obviously follows you are also an amazing, nurturing and awesome mum - however - reading this makes me realise afresh the absolute depth of your unconditional love and commitment to your wonderful, precious cherubs.

Labelling is good, sometimes essential, to gain that often denied access to the help our kids frequently need. It's a bumpy journey, and so much easier travelled if we're given a basic map for the ocassional reference to.

You know I am a few more years down the road of this autism ride, than you are presently.. and you are probably sick of hearing me spout this, but it DOES get so much easier and better along the way - I so wish I had a crystal ball to show you!

I am so glad the mother of G and J still not only knows how to dance, but does it so well.. I'll meet you for that Salsa, one day yet!

mrs willy said...

Beautifully put, Mrs H, beautifully put.

Susan Wallman said...

This post is so heartfelt. As are all your posts - that's what makes your blog brilliant.
PS: The headmistress reaction makes me reaaaallllly cross.