Sunday, 24 August 2014

Things I love about autism

*It goes without saying that everyone is an individual and these things are specific to Peter and his autism.*

I read something the other day. It was written by a parent - they said that they hated their child's autism and wished they could rip it out of them. I do understand where they're coming from as our children face so many challenges every single day and it can be really really tough to look after them, but I think it's a mistake to separate the autism from the child in our minds. It's easy to be negative about the thing that we perceive is stopping our child being themselves, when in reality it's a part of them - they can't be themselves without it!

So without further ado, these are the things I love about Peter's autism:

1) He is easy to entertain. Peter is a sensory seeker for every one of his senses, so the only thing we really have to worry about is sensory overload. He loves loud and quiet noises, all tactile experiences, strong and mild tastes, interesting smells (he doesn't experience disgust at "bad" smells the way we do), physical movement like spinning, running and jumping, visual input like lights, colours, pictures, moving objects. If there's nothing to interest him at any given moment he'll make his own entertainment by moving his fingers in front of his eyes to make the light flicker, looking at things from the corner of his eyes, flapping his hands, spinning, or making loud noises.

2) He takes joy from the little things. Peter really appreciates beauty, especially in nature. He will stop and examine flowers and insects on our walks, and will stand and gaze at running water for what seems like hours, he loves clouds, rainbows, stars, walking barefoot on grass, the wind in his hair, splashing in puddles. The joy just bursts out of him as though he can't take it any more - his whole body will tense up, and then he explodes into laughter, shrieking and flapping. You can't help but smile when you're near him!

3) He wears his heart on his sleeve. He is not secretive, he doesn't hide his emotions, he's not an introvert. When he feels something, we know about it - whether that is frustration, upset, anxiety, boredom or pure joy.

4) He is predictable. Yes, we get it wrong sometimes, but generally we can predict how Peter will react in situations and can prepare accordingly. Activities and days out take far more planning and preparation than they would with a neurotypical child, but if we try to see things through his eyes we can envisage trigger points before they occur and react accordingly.

5) He loves routine. We have no problems at all putting Peter to bed, because the "tea time, bath time, bedtime" routine is such a safe and secure part of Peter's day that he looks forward to it.

6) He is determined. He struggles to understand and make sense of the world every minute of every day but doesn't let this stop him enjoying life, progressing and achieving beyond anyone's expectations.

Thursday, 14 August 2014

Raising expectations

We're finding it frustrating that people seem to have such low expectations of Peter. It took months of his teachers saying that he was doing well, settling in beautifully, a lovely member of the class etc. before we found out about some atrocious behaviours that they were dealing with on a daily basis and were able to help them put strategies in place to improve things. We've just had a similar situation as Peter has just finished three weeks of a special needs holiday club - on the last day we discovered that he had been behaving appallingly from the first day, and the play leaders had just let it all slide meaning that his behaviour deteriorated as he continued to push the non-existent boundaries. When we challenged them they were shocked that we don't accept such poor behaviour at home so it rarely happens - they genuinely didn't think Peter was capable of making good choices.

Why is this? Is it because he has autism? Because he's developmentally delayed? Because his speech is immature and his eye contact is minimal with people who aren't close family and friends? Is it because he's a looked-after child?

How do they expect children to learn how to behave if expectations are so low from the start?

Thursday, 7 August 2014

Sibling contact

Peter's having a fantastic Summer holiday! He relaxed into the swing of things about one week in, and we've had some really lovely days out as a family. We even went camping together near the seaside, and Peter enjoyed the whole tent experience, paddling in the sea and watching the boats.

We had Peter's first sibling contact this week at a local soft play centre. Peter has several siblings - some in other foster placements, and some placed with relatives. The children were removed from their parents getting on for 18 months ago, they haven't seen each other for around a year, and it was fascinating to see them all instantly drop back into the roles they had when they were at home. The oldest child became "the parent", the youngest child became "the baby", and they all treated Peter as though he'd made no progress at all since they last saw him although they clearly adore him and have missed him. Two sets of their grandparents had also travelled to be there, and it was a strange and wonderful experience chatting to all the people present, and realising that they are now all part of our extended family because Peter is part of our family. Sibling contact will be arranged at least four times a year, and it will be lovely to watch the other children grow up and see them progress, just as it will be lovely for them to know Peter as he gets older.

One bizarre consequence of having a large, loving, extended family who don't communicate or see each other regularly seems to be duplicate presents! It's no secret that looked-after children tend to have a lot of "stuff" (although we've tried to stem the tide a bit by saving towards more expensive items that meet a sensory need rather than endless toys), but as an example Peter has received no less than three remote control cars from various members of his family for his birthday! Not that he is complaining at all, although he hasn't got the coordination to work them yet so they've been put away for now.

We've noticed that Peter seems to go through phases of rapid progression and then plateaus for a while to process everything before starting again. He's in a rapid progression phase at the moment, especially with his speech and understanding, which has been fantastic as it's reduced his overall frustration and anxiety. He's putting several concepts together now to ask questions and tell us what he wants in more detail - still no grammar, just lists of words such as "come on come on watering can paddling pool Peter blue slide tummy" to tell me I'm not filling up the watering can with the paddling pool water fast enough, he wants to slide down the blue slide on his tummy whilst I spray him!

He also now understands how a calendar works, and accepts if we tell him something fun is happening "on Friday", rather than having a meltdown because he didn't understand that the fun thing would ever happen if it wasn't happening now. We use a visual calendar with symbols for activities we're doing during the week, and he regularly checks it to remind himself what's going on. It will be a very different child going back to school in September!