Travelling with ASD

Travelling with ASD – A post from the small hours of the morning of 4th April 2016

 

We are having such a fabulous time catching up with family and friends but this is the side of Little Miss H’s autism no one sees, she saves it for me. I’m her port in a storm and right now the storm of anxiety that’s raging within her causes her to lose sleep, to panic, to lie awake worrying about tiny details that aren’t her job to worry about or indeed aren’t anything that ‘needs’ worrying about to a neuro-typical mind but she can’t control it, it’s a storm bigger than any little 7 year old should have to cope with. It’ll be like this for a couple of/few weeks and then she’ll get back to ‘normal’ but it’s this hidden, private and quiet manifestation that impacts on her and the family that makes going away for events so hard. Her weighted blanket and our newly learnt mindfulness techniques are helping but now this mummy needs to go and finish settling her and try and get some much needed sleep of my own.

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Welcome to H2Au: the stuff of our life

This is the excerpt for your very first post.

Welcome to my first ever blog post and my first ever blog; H2Au: the stuff of our life.

This blog is a personal story of our family’s life with Autism, a rare chromosome disorder and auto immune disease.

With this blog we are doing our bit to raise awareness.  We may only be one drop in the ocean but we will never see the tide of change unless we first create a ripple. Wishing for acceptance of all invisible conditions/disabilities is fruitless without first making people aware and educating them, so here we are to share our story.

What is our story?  Our story is of our family and our journey through life.
We are a family coping with lots of stuff. We live in Scotland, UK.

Let me introduce us;

I’ll tell you more about us another time but for now a brief introduction of our ‘stuff’.
Mr H is diagnosed with High Functioning Autistic Spectrum Condition (dx as an adult in 2013), ADD and Dyslexia.
Mrs H (the author) is diagnosed with Hypothyroidism, Crohn’s Disease and Fibromyalgia.
Little Miss H is diagnosed with High Functioning Autistic Spectrum Condition, Sensory Processing Disorder, a rare chromosome deletion, hypermobility, Select Mutism and has traits of Pathological Demand Avoidance (PDA).
Tiny Miss H is diagnosed with a rare chromosome deletion, Global Developmental Delay, hypermobility, hypotonia and Sensory Processing Disorder.

The interplay of all these diagnoses is complex and as much is ‘hidden’ or invisible, the struggle can be subtle and lonely. The aim of this blog is to raise awareness and acceptance of the very real issues that we experience.

I can promise that the story is raw, real, funny, sometimes sad, informative and hopefully inspirational.

Dive on in!