04.27am

It’s Saturday, almost 4.30am, I am sat drinking my 2nd coffee of the day.

Evan has a  swimming competition this morning,his bag is ready by the door his clothes carefully laid out, his water bottle packed.

We don’t need to leave the house until 7.00am but he likes to be prepared.

He got up at midnight to ask if the alarms were set, at 2am to check the same, he was then unable to settle until he had talked about the competition,what strokes he would be swimming and the plan for the day,even tho these were the same questions we had already covered in detail the evening before.

Eventually he and the dog both snuggled back down at 3.45am leaving me wide awake.

I can’t help wondering when this became my normal.

The boys

 Evan is a boy who likes a plan

He likes to know what is happening and when, needs to discuss and talk about the things that have happened so he can work out if they were good or bad experiences.So he can then use that information to plan how he will react,respond and behave the next time he is in that situation.

He is already practicing the conversations he will have with his wife and has chosen names for his children (both boys,Patrick and Connor, named from the film Marley and me)

For a long time he has been rehearsing life.

Without the natural ability to instinctively know how to moderate his behaviour in certain situations  he needs to experience as many scenarios as possible and store them for later use.Some of which is taken from television and film.

Evan speaks beautifully and is always extremely polite. However what he says is mimicked or rehearsed and robotic in delivery.

The real boy is lost in translation.

Evan is very literal in the way he views the world and still struggles to understand why people never seem to say what they mean or mean what they say.

When he was younger I explained to him it is rude to tell a person you dislike the gift they give you so he took to handing presents straight back with a cheery “No thank you”

It has taken a great deal of time,patience and effort over the years to instill in him that it is polite to thank someone for a gift, regardless of whether you like it or not, and that it does not constitute telling lies.

Now when given a present, he enthusiastically expresses his thanks using appropriate language and facial expressions,although this is simply a learnt response,he is not being polite nor is it a true reflection of his emotion.

Evan’s ability to communicate is similar to using a computer, both can only use the available data they have been programmed with.

He is exceptionally clever at memorizing conversations, using sentences,quotes and phrases he is able to call upon stored appropriate responses making him appear polite and compliment.

This is why he enjoys repetitive activities,likes to go to the same place and do the same things because he knows what to expect.This is why he likes to watch the same film hundreds(and hundreds) of times.

It allows him to really enjoy himself

If you take away his structure,the safety of practice, then the uncertainty of life  can become overwhelming.Leaving him not knowing what to expect,say or do detracting from enjoyment of everyday things.

So It may seem strange that we lack spontaneity, stick to a schedule and practice events in advance,but there is a method to our madness and it works for us.

Evan often needs to mentally rehearse, talking through a situation before it takes place giving him the ability to cope with it.

The seemless gliding through a social situation he achieves is a much rehearsed and often carefully planned and premeditated performance.

We have been to the pool where the gala is to take place several times before. Evan is familiar with the changing rooms,the smell and the sounds of the leisure centre.He can visualise where we will park and where the spectators will sit. 

All this helps him build a picture and prepare himself, it makes the day more enjoyable for him with less overload.

It is wonderful that Evan has found swimming, it combines his love of water with his need for routine and structure. 

I am so proud of him.

I know how much it takes out of him just to be with the other children waiting to swim.

I know how much harder he finds it to understand what is expected of him.

I know that this little boy gives 100% effort before he goes anywhere near the pool. 

 

 

 

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2 Responses to 04.27am

  1. Heather Young says:

    Lin I have the utmost respect for you and very often wish I had even a smidgeon of your patience. You do a fantastic job! I’d love to share your story with many of the whining parents who complain that the kids got up half an hour early or that they have to look after their kids for the whole weekend as grandparents are actually having a social life themselves. (((((hugs))))) xx

    • Lin says:

      Thank you Heather!
      I am aware I have it easy compared to the many parents caring for children/adult children with severe and complex disabilities.Families that cope day in day out without support or respite for years.
      I think we often have no idea how lucky we are until faced with a situation that shows us xxxx

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