Monday, 18 August 2014

It's Time To Let Peter Pan Grow Up

I don’t know if it’s exaggerating to call this an epiphany. After all, I like a bit of  drama. But I’ve experienced a shift in attitude over the last week. Since I spend most of my time reading, writing and thinking about autism, I figured if these new thoughts hadn’t occurred to me, then maybe I ought to share them with you.

Before I had kids, I used to get on very well with my little nieces and nephews. One of my self-styled bonding rules was never to patronise them and always to speak in an ordinary voice (not in cutesy high-pitched tones). For my young neuro-typical relatives, I’d speak more or less as I would to an adult, asking their views and listening to their thoughts. I’m pretty sure that they liked this because I became the Pied Piper for quite a while. Whenever we visited Gavin’s sister I’d be followed by a trail of small people, and I liked it. 

After Alec’s accident at the age of two, I seemed to break this rule of mine. Not only that, but I’ve only just realised that I’ve done it.  Whilst I speak to Bobby in much the same way as I did to my nieces and nephews all those years ago, I’m often squeezing Alec into a giant hug and coo-ing over him like he’s a little baby. I cringe when I read this. How could I have let that happen?

Do you really need to treat someone who is pre-verbal and who has learning difficulties as if they’re younger than their age? I’ve always rejected trying to assess Alec’s mental age, because it moves about. Of course, if you judge it by what he can achieve at school compared with a ‘normal’ ten year old, his mental age is pretty low. That doesn’t mean that I get to judge how young his thoughts and attitudes are. In some senses he does act like a younger brother to Bobby, but in other ways you can absolutely tell that inside his head he is maturing.

There’s a difference between using simple language and treating someone as if they are simple. Alec is still cute as a button and has profound learning difficulties, but is he going to grow up any quicker if I talk to him as if he’s still a toddler? I don’t do it all of the time, but I do it too much of the time. It’s become a habit.

Here’s the profound question that occurred to me: Can Alec think of himself as any older than five if he gets treated like a five year-old by his mum? Don’t we always show what we expect of people by how we treat them?

The biggest way I can show him that he’s up to the job of developing language is by how I converse with him. Not with complex language, I can still keep it simple, but with a tone of voice that implies that I know he’s growing up.

So, I indicated the sock drawer this morning and said in a sensible voice (which felt somehow unkind) – “It’s the top drawer Alec, have a look.”. And he did, and retrieved some socks. And instead of saying ‘Ooooooh well done whoooose a clever boy then!!!’ I said ‘That’s right, good job’. He couldn’t pretend he couldn’t do it as I hadn’t patronised him enough to allow it.

Because he’s preverbal, repetitive and lives in a sensory universe of his own making, sometimes the only way I can connect with Alec is to make a big fat fuss of him. 

Unfortunately, babying him may not be doing him any favours at all. It keeps him where he is. It defines him as younger than he is. 

I don’t know why it’s taken me quite this long to realise but perhaps it’s hard to face the fact that I do have a ten year-old who is rather limited in what they can do for their age. 

It’s easier to brand him Peter Pan and live forever inside that mother/toddler bubble.

What could happen if I finally let Peter Pan grow up? I guess I’ll find out.

Monday, 11 August 2014

When the carpet of hearts starts to stab your feet

It seems a while since I wrote about the adventures of Kevin the Nintendo DS.

What's been taking up more of my focus recently is Alec, and more specifically Alec's metamorphosis from a gentle and gentile little soul to the human equivalent of a wrecking ball.

When Alec's trying to be affectionate, he mugs you, and as he's got older it somehow feels more like he actually means to grab your handbag. This is to do with being bigger physically, growing up hormonally and generally not knowing his own strength.

When Alec's not trying to be affectionate, we have started to know about it. Whereas before he might have whined slightly or just ignored you altogether, now he's developed a real skill for finding the upper part of your arm that smarts most when it's pinched. He's also developed a vice-like squeeze from which his fingers have to be prized one by one.

God knows, if the way I feel about Alec could be manifested into form, the dude would be permanently walking on a cloud of little hearts. There is nothing I wouldn't do for him. Which is why I, and I suspect many other mums, have gulped down the pain of the pinching and the assault of his high-pitched screaching.

You can acknowledge to the world in general that your son is being a pain in the backside, but that doesn't mean that you wouldn't walk on hot coals if it meant saving them a moment's discomfort or pain.

Alec's aggression is no doubt a good thing. All the AuKids panel experts think so (we have done an Ask the Panel on pinching since we've had other parents write to us on the same subject).

Tori's often said that you can work far more with 'difficult' than 'docile', as 'difficult' behaviour is at least an attempt to communicate which you can mould into a more productive kind of communication.

Aha, yes I get that. In a practical, sensible, co-editor of an autism magazine sense, I get that.

But as a parent who's basically pissed off with it, the message is slower to sink in. Emotionally, I am wishing that the docile dude was back.

The carpet of hearts has been my undoing in some ways with Alec. So docile was he, so grateful was I for his mere presence on this Earth (after a near fatal accident in 2005), that cotton wool has become his comfy existence. He wasn't getting away with murder, because he never particularly looked like he was going to commit it.

But since his demeanour is changing, my parenting style has got to adapt. I've got to toughen up a bit whilst recognising, of course, all the things that he's trying to tell me in his own somewhat painful way.

In amongst all this is my brain's terrible habit of sweeping generalisations. If we're to get through this, I mustn't keep saying that Alec's difficult at the moment, or that he's going through a 'bad' phase. He is no more going through a phase than I am.

Alec has difficult moments and they are just that - moments. The pattern of his behaviour has changed for sure, and let's just hope that he's busy working on a miracle. The time I spend analyzing the bad moments, though, and getting upset by them, far outweighs the time Alec demonstrates behaviour that I find hard to deal with.

The 'phase' if there is one is more a phase of my own worry than any unrelenting pattern of Alec's.

So I've decided to keep a little diary. Not one of those diaries that chart behaviour so that you can understand its source (I've already sussed that). Just a diary focusing on all the good things Alec does during a day. The positive attempts to communicate, the times he's told himself not to grab, the big smile he woke up with... I've found that there's rather a lot of the good stuff to focus on. He is mostly still a very sweet little boy. It gives me a real sense of perspective and when times get tough, perspective is very much what it's all about.

Once you've told yourself you've had a bad day, or a bad week, or a bad month, it's not long before you say to yourself that your life is rubbish, why can't you have a nice normal life like everyone else...and that self pity can really bring not only you down but everyone else around you.

Not least the very little person who relies on your positive energy to influence their own behaviour.