The Stuff of Our Life – 17th June 2016

The Stuff of our Life.

 

Two nights ago we were woken at 2am by a very distressed Little Miss H.  Being awake is not unusual for her.  Being anxious is not unusual for her.  But this time seemed different from usual.

She was very upset about burglars.  We are incredibly lucky that so far, touch wood etc we have not been burgled, so in our groggy state this seemed a random and nonsensical thing to be SO upset about.  Where had it come from?  What was this all about?

Having eventually settled her back to bed the rest of the night was relatively painless bar the 5 o’clock wake up call but again that’s not particularly unusual.

But the interruption of sleep has a knock on effect.  Of course it impacts on Little Miss H despite her being acclimatised to her own sleep requirements, which by the way do not match mine!  But worse, it impacts on my health – I’m stiffer than normal, I’m sorer than normal and I’m foggier than normal – this then impacts on everything (and therefore everyone) else for the whole day;

I had to climb the stairs (3 flights) at nursery which shouldn’t be a problem but when every joint in your feet and legs hurt, it is like climbing Mount Everest (I imagine anyway!).  Thinking on my feet during a meeting with OT, having to think about all the equipment required for Tiny Miss at school for the coming year whilst having brain fog is trickier than it sounds.  Racing around to appointments, concentrating whilst driving in the fog and rain, lifting Tiny Miss (nearly 20kgs worth of 4 year old) who is beyond exhausted and less than compliant, standing to cook tea for tired hungry children, lifting saucepans when I have no strength in my arms and the numbness in my hands means I could drop them at any minute.  It wouldn’t be the first roast or pan of boiling water dropped on my kitchen floor due to my disability.  All whilst the pain in my arm is screaming as though I was lifting a boulder the size of a car, fighting a cramping stomach because I snatched the leftover crust of their toast for my breakfast and my crohn’s is complaining that I made a duff choice,  all whilst little, sleep deprived, grumpy people are refusing to do homework, demanding things from me every 2 seconds when all I want to do is sit down and stop hurting.  It pushes my patience to its very limit.  Mr H will have to make his own supper as I won’t manage to cook anything else after dealing with the girls’ tea.

Yet I still don’t know why ‘burglars’ interrupted our night.  Coaxing information out of Little Miss H who is demand avoidant is tricky at the best of times, trying to understand her story telling is the other challenge. So coaxing the info from her whilst trying to decode what she is telling me has become an art form.  Her lack of social imagination and impaired theory of mind means that she doesn’t realise I don’t hold in my head what she does in hers.  I don’t have the memory of her day so I can’t begin to guess, but she assumes I know who she was with, what they were doing/playing and how.  Stories start half way through with ‘he’ and ‘she’, rather than names or scene setting.  In itself it’s hard work gleaning information from her but when I’m tired, sore, distracted and impatient it can be even harder but we work at it and we generally win (ish).  So using my best patience and encouragement we got to the bottom of the burglar concern.

A group of them had been playing a game in the school playground which was something to do with burglars.  That’s the extent of my knowledge but it’s enough to deduce what is worrying her.

I am thrilled that she has friends.  I am thrilled that she plays in group games.

But I do feel so sad for her that her literal brain carries this information beyond the playground and it interferes with her life.

It’s happened before, for example when she became petrified of ghosts.  The sleepless nights lasted for weeks before we got to the bottom of it.  An automatic air freshener in the toilets at school squirts its mist out periodically and the story went around that it was a ghost.  There have been other instances and it’s always something surprising and usually something that her peers wouldn’t be overly concerned by, at least not to the extent that it impacts on Little Miss H.

So teatime last night was a warning bell to me.  She ate a huge amount.  She eats when she is anxious so I was aware something was going on but she was otherwise calm.

Thinking her concern was related to her previous night’s dreams, we made plans before bedtime about what we would do if there really were burglars and dealt with her worries.  We did brilliantly, even if I say so myself.  Her anxiety was well managed and she was calm.  Bedtime was smooth.  I was proud of us.

Tired and in pain I went off to a mindfulness session which I use to help me relax and focus and which I love.

I got home exhausted, very sore and really ready to sit down.

Little Miss H walks in groggy and confused.

Me: “Hello darling, what’s up?”

LM: “I wanted to ask you a question”

Me: inwardly rolling eyes thinking ‘seriously? I haven’t even sat down yet’ but I smile, put my arm around her and repeat “OK, what’s up?”

LM: “well, I think I might have been sick”

Me: *action stations*

A huge amount of stinking, putrid vomit is on her bed, carpet, seeped into the drawers under her bed etc – so dealing with her puking, whilst cleaning up the lumpy half-digested remains of her (enormous) dinner, changing bed linen, changing duvet, cleaning the carpet, changing her nightwear all whilst every joint in my body is on fire pushes me to the brink of vomiting from the pain myself.

Mr H does his best, he races round fetching me things to help me clean up (as I can’t be running up and down the stairs) but he can’t enter the bedroom so I’m flying solo.  His sensory processing means all smells like vomit are too much for him and all personal hygiene sounds are beyond his tolerance level.  Brushing teeth noises are bad enough but puking and retching are beyond his limits.  When the puking resumes I send her to the bathroom and then with his jumper round the lower half of his face in an attempt to mask the stench, he stands there gagging, arm outstretched behind him, holding her hair out of her face, whilst she’s bent over the toilet.  He supresses his sensory challenges to cope with our daughter’s plight.    He surpasses my estimation of how much he’d be able to cope with.  He surpasses his own!

The bedroom ready for her to lie back down, I’m dizzy with pain from the exertion of bed changing and carpet cleaning.  I stumble back down stairs to sit a minute whilst Mr H takes over and settles her into bed.

My pain is not abating and a poorly child means another night with interrupted sleep.  Every cough has me on tenter hooks and when she’s sick again I can’t easily leap out of bed, so I have to wake Mr H.  (How does he manage to sleep through all the noise?!)  So another night of us all being sleep deprived.

Today my hand is swollen from the pressure on it from scrubbing the carpet.  I’m stiff, sore and burnt out.  Everything hurts.  Paperwork has now gone undone for another week as my brain can’t organise itself when I am this tired and I don’t have the headspace to stop and think.  I had both girls at home today so I couldn’t just stay in bed to rest and recover.

Mr H gets home from work tired after a busy day and sleepless night.  He not only has to cook his own dinner tonight but he has to shop for it first.

It’s an endless cycle.  Sometimes I just want to get off the merry-go-round.  ‘I’ll sit this one out’ I think to myself, but illness is not optional, parenting is ongoing and the challenges are relentless.

I’m not complaining.  I’m just explaining.  It is just the stuff of our lives.

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Today I Cried – 2nd June 2016

Today I cried.

Tiny Miss H took part in her first ever school sports day.

I cried with pride.  But I also cried out of sadness.  I’m naturally positive and see the wonder and majesty in all her achievements but today I felt a sadness.

She brought up the rear with style and panache. She looked like she was enjoying herself until about half way through her race when she looked slightly lost, confused, tired and sore, her left leg dragging, her gait unsteady.  But she did it, she ran the whole way from the start to the finish, straight into my arms.  She gave it her all as she always does.  I couldn’t have been prouder.

I cried with pride, I cried with joy and I cried with sadness.

Whilst she was at nursery her physical challenges were at times more of a hidden disability, at times subtle and partly camouflaged by age and stage differences.  Today they were on public display.  Today they were smack in the face, screamingly obvious.  I’m not sure I liked that.  It made her vulnerable and it made me fiercely protective of her.

Today our world changed.  I was no longer a warrior mum proving to others her challenges are real, advocating for her to protect her and fight for what she needed.  Today I needed to hug her, hold her, protect her and show her she is amazing.  Of course I’ll always be her warrior mum, advocating for her, fighting for her but the battle lines have changed.  Now I don’t need to prove what I am talking about.  Now I’ll be heard.  Now they can see it.  Now it’s real (until now a tiny part of me hoped it wasn’t – that’s denial for you).

Today our world shifted on its axis and today I saw the challenges she will face, the battles she’ll have to fight.  Until now I’ve been able to fight them all for her.  So far I have won.  Together we win.  Now in a small way I have to hand over the reins to her.   I know she can win.  I hope she knows that.  I hope she’s seen in me enough to guide her through the tough times.  It scares me, but I know she is brave and I know she’ll give it her all.

Her starting school marks the start of an independence that is too big for a small person to have to face and for children with differences that’s huge, for them and particularly their parents.

Today my world changed.

Today I cried.

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.

#bringmecaffeine

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.

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!