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Living with danger fortunately most parent’s don’t understand…..

My heart sank this morning when I woke and did my usual check of my facebook news feed. Another 5 year old autistic boy wandered off and being hunted for…. Then further down my feed another young lad with autism wandered off and drowned… An all too familiar situation when you arw living in an autistic world.

From very young I have had a sixth sense with my 2 SWANS that given their learning disability (we didn’t have the autism ADHD diagnosis’ at that time) I had to always make sure doors, gates etv were locked. I remember visiting a close friend with my kids and was up and down from lunch closing doors, garden gates etc.. She told me at the time I had to teach my kids boundaries rather than simply making it safe…

Now I am confident I have to make it safe.. In fact to be fair my lovely friend having come on this journey with us would now understands that I am not just a paranoid mum.

Both Angel and Soldier would take themselves off for a walk, no looking back, no looking where they are going… And aoldier’s love of water is terrifying.

Our own home has house keys in coded key safes, up high is no longer an option and our outside doors sound like a shop alarm when someone opens them, our garden gate is always locked and despite all this security I still worry….

We are on holiday at the moment and even with a gated and fenced villa, pool fence etc I still go about checking doors are secure, won’t let the kids run free in the grounds unless they are accompanied in case the gardener or pool cleaner arrive and leave the gate open..

It’s so sad ūüė¶ and seems like I am restricting their freedom and I know many friends and family think I am paranoid but they don’t live in our world….

This is an interesting link on autism and wandering (and this is without learning disability). 90% of tragic wandering results in drowning ūüė¶ water is like a magnet to autistic children and they sense no fear.

http://www.awaare.org/

My heart goes out to the family in the US who lost their son this morning, probably a loving, caring family who live in fear of their son wandering off…. Parents like us know only too well how easy it is for them to be here one minute gone the next….

I am glad to most parent’s this is an alien concept! Xxx

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Lack of safety awareness = stress!

For most families it must feel such a simple thing, heading out a few blocks walk to the local shops to run an errand. In fact in such beautiful sunny weather like today it should be a pleasure…,

2 children with learning disability, no safety awareness and sensory issues it’s not that simple!

As there was only me (mum) today one child must go in a buggy as two become uncontrollable and not being dramatic that could mean one or both ending up on the road and that really doesn’t bear thinking about! Soldier can’t walk far especially if disabled by sensory noises like busy traffic but he wants to try and getting him in a buggy can be a real¬†challenge now. ¬†He’s getting big and strong and it is a battle of strength, how will this pan out when he’s bigger? I pray that the sensory issues lesson and he understands enough that he has to hold your hand and walk with you.. Otherwise he’ll be restrained when he is a big angry boy wanting to walk and that feels so cruel and incredibly stressful, he doesn’t get it is for safety….

Angel decided she was bringing baby Annabel in her pram and after major meltdown when mummy said no I did what you should never do and negotiate that she could bring the pram as long as she walked next to me (i.e. I gave in!) 

So off we set for a short walk to the local shops to collect something and within seconds Angel with her ADHD is not looking where she is going, bashing into Guy’s buggy, walls, lamp posts and even passers by! Stopping at kerbs involves me grabbing her and on the way back she thought it mighty funny to run off.. Mummy certainly didn’t find that funny next to a busy road!¬†

Getting back home was a relief with sore shoulders from the stress… I have no idea what it must be like to be able to have your children walk safely beside you, no idea but I can only imagine it would be bliss!! Xx

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A diagnosis, so why so confused??

Yesterday our world was turned upside down again! We turned up for a routine appointment for Angel to find out we had results for our Soldier from a leading edge genetics study of developmental disorders that Soldier has been part of for 3 years. 

This study is called DDD (deciphering developmental disorders) and holds the hope for many families who have children with undiagnosed disorders (SWANS) that one day they will find the answer to that much asked question ‘why?’.

Our geneticist who is a lovely and an incredibly well respected geneticist Prof Ftzpatrick was hugely professional but we could tell he was excited about the uniqueness of what they have found in Soldier.

In essence they have found two genes that don’t function properly. They are not duplications or deletions as is normally found in genetics they just are not quite right. Both are incredibly rare and one of the genes they don’t wholly understood what purpose it actually serves in the body. One gene has 5 reported cases of children with disorders and the other 4 globally. And these reported cases are either duplication or deletion so not the same as Soldier. ¬†Please believe me I am trying not to use any medial jargon!¬†

So tons to take in…..

 

So how do we feel? 

– oddly a bit confused, a bit numb, we have a cause for one of our SWANS but it doesn’t tell us an awful lot more.

What now?

– Angel needs tested to see if she has the same..

Is there a cure?

– no. At the moment there is no understanding of the impact never mind a cure…

Are there any adults that might give a clue to the future?

– no, unfortunately not, these genes were only discovered in 2009.. In time though maybe more cases will be identified and give future kids an indication of what the future may hold…

What will change?

Probably nothing, as we don’t know what it means therapy, support, education, oxygen etc will all stay the same…

Why has it happened?

Hubby and I have both passed a different faulty part of the same Gene to Soldier. As we have 2 copies we are fine but his doesn’t function properly….

What about other kids that we may have?

There is a 25% chance they could have the same… Who knows if Angel is the same yet….

Have I been on google?

Of course, who wouldn’t. There’s not much to read as so rare, no social media groups to join, no English¬†speaking families to contact…

It’s a bit strange, I expected an emotional roller coaster but instead it’s all a bit numb.. All a bit nothing.. It’s early days right enough , the news is only 24 hours old, let’s see what the next wee while brings…. Xx

 

 

 

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Not a budding children’s author with my nightime writing!

For nearly 2 weeks over Christmas we had to stay up at night and watch Angel sleeping in case her tonsils blocked her breathing until she had her tonsils removed on 3¬†Jan – that’s a whole different blog!

How do you stay awake?? Well I decided to enter a mumsnet competition to write a short story about animals, the prize to be published in a McMillan book and have your story illustrated. Perhaps writing when half asleep having been up night after night was not very sensible but it gave me focus for a couple of nights.

Over 600 entries and I didn’t make the short list but I did manage to stay up and ensure my Angel could breath¬†so success in one field.

Anyway I thought I would share, enjoy me little rhyme/short story – the theme had to be an animal!

 

Sam searches for food
Sam Sea Lion was finished work
After his safari park beat Catching balls and other tricks
So hungry he needs to eat

Sam got up, and headed off
As fast as he could go
To see the meerkats eat their food
And fill their tummy so….
                                                               
The meerkats they were guzzling
on insects, dirt and worms
Sam said yuk, I can’t eat that
Your food it makes me squirm

Sam got up, and headed off
As fast as he could go
To see the pandas eat their food
And fill their tummy so….

                                                               

The pandas they were chomping
on bamboo leaves and shoots
Sam said no, I can’t eat that
Your food tastes just like old boots

Sam got up, and headed off
As fast as he could go
To see the hippo eat her food
And fill her tummy so….

                                                               

Hippo wallowed in the lake
Gobbling up water plants
I would like to swim with you
But as for eating that I can’t

Sam got up, and headed off
As fast as he could go
To see the tiger eat his food
And fill his tummy so….

                                                               

The tiger he was biting
Antelope for his tea
That’s my friend, I can’t eat him
Tiger food is so not for me

Sam got up, and headed off
As fast as he could go
To see the bats eat their food
And fill their tummy so….

                                                               

Bats flying in their dark cave
Swooping down to catch some flies
No way could I do that

I just cannot jump up that high
Sam got up, and headed off
As fast as he could go
To see the bison eat his food
And fill his tummy so…

                                                               

Bison he was chewing on
Lush green grass straight from the ground
How boring that must be
Even though there is lots around

Sam got up, and headed off
As fast as he could go
To see the rhino eat his food
And fill his tummy so….

                                                               

Rhino he was foraging
Every single but of a bush
He will run after me

So please do not disturb him Shoosh

 

Sam got up, and headed off

as quiet as he could go

To see the monkeys eat their food
And fill their tummy so….

                                                               

 

 
The monkeys they were peeling

Lots of fruit and nuts yummy

Fruit is good for me but

It does not agree with my tummy
Sam got up, and headed off
As fast as he could go
To see the giraffes eat their food
And fill their tummy so….

 

                                                               

Giraffes they are stretching up

Easting leaves from up on high

Chomp chomp from the branches

How would I get up there? oh sigh

Sam got up, and headed off
As fast as he could go
To see the snake eat his food
And fill his tummy so….

 

                                                               

Slippery snake slides along

And with forked tongue eats a rat

Eeee Eeee your food still squeaks

Oh snake, how can you eat that

Sam got up, and headed off
As fast as he could go
To see the Ostrich eat her food
And fill her tummy so….

                                                               

Wow you are very big for a bird
Walking through and eating grass
Gracefully pecking through it
Not for me, I think I will pass
Sam got up, and headed off
As fast as he could go
To see the zebra eat her food
And fill her tummy so….

                                                               

 

 
The beautiful stripy zebra
Daintily eats flowery plants
Why would you eat such pretty things
Flowers are on dresses and pants

Sam got up, and headed off
As fast as he could go
To see the chimps eat their food
And fill their tummy so….

                                                               

Hoo hoo call out chimpanzee
Tucking into lots of figs
That is a lot of food
You eat even more than the pigs

Sam got up, and headed off
As fast as he could go
To see the lion eat his food
And fill his tummy so….

                                                               

He is king of safari

Sam watches safely from far

Lion rips up his meat

Same moves fast when lion roars Rharrrr
Sam is up and heads straight off
As fast as he can go

To see the penguins eat their food
And fill their tummy so….

                                                               

At last they eat the same as me
Munching on fish yum yum yum
Can I please share your grub
I’d love it in my empty tum

Sam got up and headed in
To join the penguins meal
Lots of different types of fish
So happy Sam could squeal….

sammy seal

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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¬†‚ąö what if he gets bored of that? Box of sensory toys¬†‚ąö what about our angel? IPod, songs, headphones¬†‚ąö writing pad¬†‚ąö nappies for my 5 year old¬†‚ąö snacks and drinks to keep things calm¬†‚ąö changes of clothes¬†‚ąö 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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