That kind invitation to something that should be enjoyable and in the past would have been met with ‘great looking forward to it’ is still met with ‘great looking forward to it’ whilst underneath I am having lots of other conflicting thoughts:

  • What is their house like?
  • Are the outside doors secure?
  • does it have stairs?
  • is there somewhere quiet for our soldier?
  • what damage will our hurricane angel be able to do?
  • will it be a formal sit down?……

That simple act of kindness from friends who we haven’t seen for too long and who we’d love to spend time with and see their 2 lovely mainstream kids. I am determined that we do still try and do normal things even though the easy option is often to stay at home!

This is how it went yesterday:

1. Preparation- what do we need to take? How will we keep our soldier desensitised? IPad √ what if he gets bored of that? Box of sensory toys √ what about our angel? IPod, songs, headphones √ writing pad √ nappies for my 5 year old √ snacks and drinks to keep things calm √ changes of clothes √ and so it went on…. Really we are just going for lunch not on holiday..

2. The journey there- our angel doesn’t want to get in the car as our soldier has sensory issues and cries and she can’t cope with his crying… We recently bought a weighted blanket to help him with the sensation of not being in control of his body when the car moves which has helped so much but our wee lady still has memories of him in full meltdown with motion change! After a while and a lot of persuasion all in and belted, soldier has his weighted blanket folded across his lap, ready to go… We know they won’t eat a normal meal of meat and veg (textures too difficult) so they (and the back seat of the car) enjoy a sandwich, suck on raisins and some crisps on route. Sorry to my pal who has cooked so nicely for them but we have now learnt getting them to sit at a table and eat is too stressful so much better to feed them before…

3. The arrival – after 30 mins of repeating reassurances of where we were going to our angel, what we will do when we get the, who will be there, when we will leave.. timetable.. Timetable… Timetable… We arrive and she is tentative but ok to go in. Our non-verbal soldier doesn’t recognise the location and so sits on the ground when he’s lifted out the car. ‘I’m not going here, I don’t recognise it’.  IPad to hand with his favourite app on – he will follow the iPad as if it was a dog lead – and laden with our many bags we are there! Hurrah, lovely to see you! Welcomed into their beautiful home and by their two polite gorgeous boys.

4. Pre-lunch – a beautiful oak staircase with twinkling Christmas lights wrapped around the bannister, like a magnet to our soldier! We don’t have stairs, both our angel and soldier will now venture them but neither are steady on their feet so they can’t be left alone.  Twinkling lights, lots of flapping, jumping and excitement from our boy and yes you guessed it stair climbing! From the bottom to the top and back again following the lights, up, down, up, down, up, down….. With me supervising in case he takes a fall.. Meanwhile our ADHD angel has spread her wings and  is running all over their beautiful house lifting ornaments (none of these in our house any more, not even photos lying out), exploring Christmas decorations, in and out all the rooms – bedrooms included. Yikes, sorry, so not appropriate for a child to be in your bedroom (we now have a lock on our door at home).  Feels so rude as we should be catching up, finding out how our friends are, instead we are in supervision mode!! Eventually our angel starts playing chase with their youngest whilst our soldier is sat at the bottom of the stairs watching the lights, flapping behind a home made stairgate of piled up kitchen chairs!

5. The lunch – a light gold carpeted dining room with cream upholstered chairs – aaaargh, I can see my son now dropping tomato sauce on the carpet or my daughter spilling her drink!  Reminds me of my last house with cream carpets and cream fabric dining seats, gosh how things have changed!  Now it’s wipe clean floors and chairs.  My friend is so lovely, don’t worry about it she says her son drops food on the floor all the time..  We all sit down, the soldier led by his iPad to get him to sit at the table, our angel led by the promise of a drink of 7up. Our host serves up a lovely meal of chicken casserole, mash and veg.  Soldier sticks his hand in and sucks some mash then is off to find a quiet corner on his on.  8 people in one room is sensory overload for him.  Angel does manage to sit still long enough to drink her 1/ 4 up of 7up. Then it’s off spreading her wings again whilst we try and eat. This time it’s mummy that’s up, down, up, down. checking on what she’s up to – moving objects out her reach, checking doors, removing unopened Christmas presents she’d find fun to open, turning off a laptop she has found on without password protection (woops sorry, just turned off the SONOS sound system!).  Sorry to leave the table so much, sorry I have rearranged your house, sorry the quick chat I had in the kitchen with my lovely friend was cut short having to run after our hurricane before she caused more chaos, sorry they didn’t eat your lovely meal and final sorry we have to eat and run as the soldier is starting to get over sensitised and I can see signs of meltdown and the angel has drained of colour, looks shattered and will kick off soon if we don’t head home and back to routine.. and I know it’s only 5pm!

Dear friends, please know that we totally appreciate you hosting us all, making us feel very welcome and putting up with our chaos… we love you and we are sorry we can’t get time to sit down and hear properly how your lives are!  This little blog will start to give you all an insight into ours…..





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