Friday, 6 October 2017

AutismParenting: Never underestimate the value of routine 


Everything in life has an intrinsic value.   Some things are more important to some of us than others. Some value family, some health, some money. My six year old autistic son values routine.  Routines keep him safe.  Routines ensure things happen right.  Sometimes I'm blown away by the impact a tiny change can have.

David's school is having some building work done.  An unfortunate incident where entire roof of one of the blocks need to replaced means that the Year 6 now need to be taught in some semi-permanent structures in the school car park.

It's a huge job for school and there are a lot of things going on on the school grounds.  David isn't in Year 6.  He's not even in the main part of the school  David is in Year 1 (after repeating his reception year last year) and is in a specialist autism unit attached the the main school.  Kids in the unit can go to the main school when they can cope with their lessons.  But the new classrooms aren't the problem for David.

Unlike the kids in the main school and mostly for security reasons, kids in David's unit are brought to school by car and dropped in a drop off zone in the school car park by the unit entrance.

One of the tiny little knock on effects from the building work is that the cars can't get to the drop-off and pick-up zone anymore.  It sounds like a ridiculous thing to be upset about doesn't it.  I now park my car on the other side of the school gate approximately four meters away from where I usually park the car.

Never underestimate the value of routine. Every school day for the past two and a bit years David has been picked up from school in my car from the parking zone inside the school car park.  On Monday that didn't happen and the results were catastrophic.

As I pulled my car up to the gate 'in the wrong place', David went into meltdown and it's probably the worse one I've see since the shoe incident.  He threw himself onto the gravel path screaming and kicking with tears pouring one after the other down his instantly red face.  He was constantly pointing at the car and the car park, the car and the car park.  But there was nothing to do.  Where the car park once lay, was now a double storey classroom.

It took us, that's myself and a member of the unit staff, a few minutes to work out what David was so upset about.  Did he want me to go to the car park? Did he want his teacher to go to the car? Transitions, moving from one place or another or from one task to another, have historically been difficult for David but it's not been as bad recently.  It's something we are familiar with as his older brother used to find them hard too.

His next action was definite.  David ran to the rear of our car, with us in pursuit.  There he used all his might smacking and punching the number plate, still with crying and screaming.  He was trying to move the car.

When David is this upset and we can't help fix what he sees as being wrong, we usually have to wait and try and help him focus on something else.   We try and replace the 'value' he has lost in some way.

For example, if the the car being in the right place gives David a satisfaction level of, say, 10 and it being in the wrong place takes David to a, say, -10, then we've got go find something worth 15 or 20 to get David functioning again.

I'll be honest, after I'd tried the iPad, cake and some chocolate I happened to have in the car, I was out of ideas.  The staff came out with various items that were David's reward and motivator items in class.  Nothing.  People from the rest of the school crossed the road and past on the other side.  A delivery driver dropped a parcel up the road and stood looking for a few minutes.  I think he thought we might be kid napping David or something.  Eventually the delivery man left - I don't know what he thought was going on.

And after 40 minutes, David was still not letting anyone touch him and screaming at the back of the car.  In a last ditch attempt one of the members of staff pulled youtube out on their phone and played 'you're welcome', the song from Moana.   The screaming stopped.   A minute later so had the tears as David stood still facing my rear number plate but looking out the corner of his eye at the phone near his face.

After another two minutes David followed the phone like a puppy following someone with a treat into his seat in the car.

50 minutes.  50 minutes of doing nothing but trying to get David into our car to take him home. Needless to say his siblings were upset and confused by what had just happened.  As I sat driving home, I prayed that this was a one off, but I'm afraid to say that's not the case.

The truth is nothing, not even Moana on youtube, was valuable enough to David to get him straight in the car the next day. But his meltdown lasted just 30 minutes.  The next day it was down to 25.

I've never seen David so affected by such a simple change before.  He's had meltdowns but not so long or so upsetting.  And as I left his school today, with his meltdown down to just 12 minutes, I reminded myself to never under estimate the value of routine for David.  It makes him feel safe, it makes things seem right.  And when a routine changes, we will have to accept that he is going to find it extremely difficult to move on.  Let this not be confused with defeat, any understanding of my son I gain from an experience is one step closer to him.  But sometimes this is quite a painful step.

Related links:
Autism Parenting: My son's heart ache over one shoe
Getting responses using a token economy
Tearful transition turns out OK
Different possibilities can be OK



18 comments:

  1. I can't imagine how distressing this change must have been to David, though it's clearly affected him deeply. And it must be hard to know there's nothing you can do to put his routine back for him, however much it upsets him, and to see him upset. I hope he manages to adjust to the change soon and the meltdowns lessen x Thanks for sharing with #WotW

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  2. Routine is so important for children with autism. I didn't appreciate how much myself for some time. Now my son is an adult he still gets upset by sudden changes that we make but progress has been made and he can now break his own routine without consequence. I hope that David has a more settled week next week, it is easy for us to underestimate the effect of small changes. #wotw

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    1. Thanks Louisa. Our eldest copes better now but it still affects him I think. Much better the following week too.

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  3. Aww! Bless you! Sending love and hugs. It sounds like a distressing time for you all. I hope David is more settled next week x

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  4. Goodness. So difficult for all. I'm glad you can see he is gradually adapting to the inevitable change. I'm sure when the school were drawing up their plans for the repairs, they had no idea the problem it would cause for David. I like how describe the satisfaction levels. Hope it all gets easier for David and all of you. #wotw

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  5. That sounds exhausting for all of you - It sounds like things were thankfully improving although I bet a 12 minute meltdown is still very challenging to deal with and I hope that David has now adapted to this change. Disruptions to expected plans can be really really hard to deal with. Have you ever written about how you manage to stay calm when your children are in meltdown? Would love to read that one! Thanks for hosting #SpectrumSunday

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    1. I've not idea how I manage to stay clam but I usually do. Maybe because a lot of the time me being calm is actually one of the few things I can do that helps the situation? I might have a think though and do a post.

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  6. Bless his heart, it must be such a confusing and distressing situation for him, and for you to see him like that. I hope every day gets a little better for him #SmallStepsAA

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    1. Thanks, a week later and it's almost as if it never happened. Each day got better until it was OK.

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  7. Oh goodness, this is such an insight into how the seemingly small things can be so huge for children with autism. I think routine is actually quite important for children in general but can only begin to imagine the repercussions of not following a routine for a child with autism through this post. Thanks for linking up to #coolmumclub xx

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  8. Oh bless him. I am so sorry that he has found this change such a challenge and it must have been very difficult for you to witness I am glad the staff were around to give you support. You are amazing! Thank you for linking up to #ablogginggoodtime 🎉

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  9. Poor David (and you!), it must be so incredibly hard to see him struggling so much with a change like this and know that there is nothing you can do to make it right for him. So glad that the staff at school were so supportive and that the meltdowns have been easing as the week goes on. I hope that this week has been a much better one for you all x

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  10. Oh bless his heart. I know how well routine works for us so I can only imagine how important it is for you as a family. Thanks for linking up to #TriumphantTales, hope to see you again on Tuesday! X

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  11. I still get floored by my Eldest's reaction to small changes, especially when we don't realise that it is part of a routine. Just this morning Eldest had to be calmed down because his 5yo sister wanted her weetabix without milk. Turns out, in his mind you can have normal weetabix without milk, but not chocolate weetabix. For him chocolocate weetabix without milk is like a biscuit and you can't have biscuits for breakfast.

    Hopefully the past week has been a little easier as he gets used to the new routine.
    #spectrumSunday

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  12. Poor thing, my D can be (and does get) absolutely floored by the slightest change, it's a case of riding it out isn't it. Hope he's adapting more to the changes now. Thanks for linking up with #SmallStepsAA

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  13. I really feel for you, I hate meltdowns like this. I feel like we get trapped in a circle of upset and you need something to break that circle. Sometimes we can't. Sometimes we have meltdowns just because we need one and they are easier. I hope your school drops get easier as this work continues. I feel you might need lots of cake though! #SmallStepsAA

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  14. Whilst my girls are not autistic, any break in routine causes major distress to my eldest. It's something I have to actively manage rather than just accept.
    Thanks for sharing.
    #ablogginggoodtime

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  15. Oh gosh, it's so hard when you can't do anything to help! Thank you so much for sharing with #AccessLinky

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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