Sports Day -2nd June 2016

Tricky, tricky week here at H2Au towers.  Today is sports day and the build-up causes such anxiety for Little Miss H.

Last night she couldn’t handle her emotions and she couldn’t sleep.  She finally fell into a disturbed sleep at 2am and was awake at 5am.

Her normal Thursday routine won’t apply and she can’t handle that.  The fact she doesn’t know EXACTLY what sports day entails (in spite of taking part last year, she can’t generalise her experiences).

Details that worry her include; what she’ll be doing, where she’ll need to be at any given moment, who will win, who will be there, who is in her team, what the weather will be, whether lunch will be affected, what snack they’ll be having and whether she’ll be able to have the snack given her allergies, when/where she’ll get changed, will she know how to do what she needs to do etc etc

These are all questions she has asked this week.

She is also excited because her team won last year and she likes winning so is fully expecting to win again.  If they don’t, the fall out will be disproportionate and will need careful management.  We have been working on expectation management and making plans just in case.

Adrenaline will get her through the day.  She will ‘cope’.  We will manage.

This regular stress on her little body coupled with the lack of sleep is unsustainable and causes fatigue which impacts on her hypermobility so she may not do as well today as she is hoping/expecting and she can’t make the link.

The fact that she’s been awake since 5am means so has Tiny Miss H who does not function with fatigue.  Tiny Miss H is to be at sports day as part of her school transition management and that fact is causing Little Miss H further anxiety as it’s another facet she needs to be aware of and in ‘control’ of.

In itself it’s a big day for Tiny Miss H as she prepares for her, soon to be, new school and has all the emotions and challenges associated with that.

For Tiny Miss H a school sports day is something we never dared to dream she may take part in when we received her initial diagnosis.  Hard work and determination have meant she now is able to be there and furthermore actually take part in the ‘new starters race’ – a challenge in itself for her emotionally as she is beginning to become aware of her differences in ability and in terms of it is daunting to be the tiniest at big school and most new starters will be feeling some anxiety.  A challenge also physically as she isn’t as able/stable/fast on her feet as her peers.  To do this on top of sleep deprivation impacts more than you can imagine.  It manifests in challenging behaviour and screaming.  Which further compounds everyone’s stress.  It also means she will be more prone to accidents and falling and she will require more physical support generally throughout the day. For example she fell on the stairs at nursery this morning due to tiredness.

The lack of sleep for me has its own issues regarding my pain levels and therefore my patience and ability to think on my feet, my ability to help Tiny Miss physically and my ability to employ the various different strategies each girl requires to support them to manage their own tricky days.

So a simple sports day becomes a gauntlet and I have to run it carrying two little misses, both metaphorically and literally and all on three hours sleep.

What could possibly go wrong?!!

Have a great day people.



Author: H2Au: the stuff of our life

H2Au: the stuff of our life. A personal story of our family's life with Autism, a rare chromosome disorder and auto immune disease.

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