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The truth about tiredness…

How many times have I heard friends moan they are tired as their little one has been up during the night sick or is having a phase of being up during the night… Regularly I take a deep breath whilst thinking ‘if only…’  I hope one day that never actually slips out! After all, relative to their normal life they will be tired and to be perfectly honest I wouldn’t wish our lack of sleep on any of my friends!

Angel is now 6 and soldier 5. For the first 3years after angel was born I lived with a constant headache through lack if sleep. For those parent’s reading this think back to the first 3months of parenthood and how tired you were waking up constantly through the night and even up all night quite frequently and imagine it never actualy stops… This is what we and many other special needs parents have to learn to live with.

A combination of both children requiring oxygen at night time and pulling off their cannula’s regularly, angel having ADHD and both having sensory processing issues including hyper sensitive to noise. What does that really mean though? It means

  • having to wait until the kids are asleep to put on their oxygen cannula then waiting again to turn the oxygen concentrators on so the air blowing up their nose doesn’t wake them up then up, down, up, down to reapply using the same elongated routine when they sense the air and pull it off!
  • Angel going through periods where the oxygen routine would be a welcome rest. At the height of Hyperactivity Angel can go 2 full nights up buzzing… As she doesn’t stay still for 10 seconds it’s like a hurricane has swept through our house. As she has learning disability and no safety awareness constant supervision is essential.. After 2 full nights of no sleep it’s like flying to Oz and back again the next day, jetlag city!! How Angel keeps going I will never know, she’s like the Duracell bunny!
  • Sensitivty to noise means – no kettles, tv on silent, no crisps, whispering… I’m sure you are getting the picture, if not they are up and the routine begins again…

I can only describe the permanent tiredness as like living with a hangover…

We can trully understand why sleep deprivation is a form of torture…a good night is 4-5 hours sleep and not necessarily all at once. Not something we would wish anyone else to have to experience but know many other families out there quietly cope with the same challenges too….

Sleep well tonight folks x

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Pls come to lunch, it’ll be lovely to see you all…..

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…..

x

 

 

 

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Happy New Year

We wish you a merry Christmas, we wish you a merry Christmas, we wish you a merry Christmas and a Happy New Year!! As I embark upon sharing insight into our lives with you, our family, friends and followers a quick look back at 2013 by way of introducing ourselves…. In true Ali (that’s me) style my glass is half full and I remember the good things. On here you will share all the twists and turns and share with us in lives that are anything but ordinary. Thank you for giving some of your precious time to read…

Lots to be thankful for in 2013. Our angel has had a wonderful time at school, learning her alphabet and numbers. She was so ready to spend time with her wee pals.
our soldier finished nursery where he made some great wee pals and moved onto School. He smiles every day and gives the most amazing cuddles. He finally got an autism diagnosis, putting a label on some of his behaviours, it doesn’t change him he’s our wonderful boy.
Hubby made partner at work something he’s really strived for.
Me, I have had a wonderful year with my fab kids. Spent time with and had the most amazing support from old friends and many new. Designed fatframe which has taken sooo much longer than I wanted but should be available to buy very soon. And had a very very busy year at work with lots of laughs too.
It’s not been a year without it’s challenges and I always miss my mum and dad at this time of year but in balance a lot to be thankful for…..
So thank you to each of you for being part of it in lots of different ways. I wish you a fabulous 2014 and hope it provides you with many happy memories to carry forward and cherish in future years….
HAPPY NEW YEAR

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