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It’s been a year….

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Since I last blogged….

I’ve taken to the iPad again tonight as it has been a week of real highs and lows. When you walk the path we walk alongside Angel and Soldier it’s anything but ‘the norm’ and you see the absolute best and worst in people and situations.

This week we have experienced really wonderful kindness and giving for kids like Angel and Soldier when our local taxi drivers took 100 kids including Angel and Soldier to the seaside. These cabbies give up their day (and many the day before to decorate their taxis) as do police outriders to escort the parade to the seaside. The councils close the street route and the public take to the streets to be soaked by water guns and water bombs as the kids have a day money can’t buy. Parents and carers can relax and be amongst families just like us, no one turns a hair at meltdowns, nappies on older kids, behavioural traits, you name it… It is normal to us… And the cabbies treat your kids like the special little angels they are… It’s exhausting as they pack so much into one day but truly magical.

This week has also broken my heart watching a fellow SWAN family facing into an impossible decision for their brave boy. This SWAN mummy is absolutely amazing, she writes beautifully in her blog. https://areyoukiddingney.wordpress.com/2016/06/18/quiet-storms/.
She is fun to be around, stunningly elegant, has a successful career, most of all she is filled with love for her gorgeous family.

We have talked a few times of how her son and Soldier look really alike and have similar mannerisms. We’ve watched each other’s boys grow up in our SWAN network. I can’t begin to imagine how surreal and emotional her current journey is…. I think how I would feel if it was Soldier but it’s just not possible to imagine…

Life is precious, enjoy every moment you have with those you love and give yourself a kick up the backside when you are stressing or arguing about nonsense… Save your energy for when life throws the really big challenges at you ūüė™

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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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Rainbows week 3…

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Was a trip to the local Pizza Hut.

Angel has been very excited about going to eat pizza with rainbows! Mummy was more nervous about leaving her… Will she sit still? Will she make a bolt for the door? Will she cope with the noise?

Well 15 little girls and all the noise and she coped so well, ate her dinner and enjoyed it! I am so proud. And so thankful for the 3 leaders who have accepted her so well into their Rainbows group. ūüôā ūüôā

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No blue badge for a learning disabled child is like taking away their freedom….

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I have to admit to shedding a tear in front of Angel today.. Mummy’s upset she says….why?

We were sitting in the SMART (SouthEast mobility and rehabilitation technology centre) in Edinburgh having been referred there for Angel’s blue badge assessment.

She has had a blue badge for 3 years and it has transformed our ability to do things. Angel finds crowds incredibly difficult, has NO safety awareness, is frightened in new environments, frightened of loud noises, has no concept of waiting, having ADHD she is very flighty and thinks it’s funny to dash off even in front of a car and her learning disability means she would run off and just keep going..,… The ability to park close by makes essential things like doctors visits and dentist visits so much less stressful before the actual appointment by limiting the sensory issues. Even accessing outings is made possible by avoiding busy crowds and queue’s. We are able to let Angel experience so much more of life.

Children like Angel use to be awarded blue badges on the grounds of safety awareness. Not any more… The badge criteria is now solely physically based, can you walk 50 metres along a quiet hospital corridor with no distraction, noise, traffic etc? How can this be a fair assessment criteria? You don’t apply for a blue badge to park at the top of a quiet, safe, enclosed internal corridor… Even the assessor said today she felt sorry for us (especially as we have Soldier as well) but that Angel doesn’t tick the boxes so Angel isn’t eligible! ‘Don’t give up hope she says trying to soften the blow, the autism charities are lobbying parliament so you never know… But at the moment safety is not a criteria’. So as a mum I hear ‘we no longer care about children who are unsafe, either you restrict what you do with them or you put your child’s life in danger’ what a choice??

Come on government, this can’t be right, we get that you want to reduce blue badge abuse and personally I totally agree with that but this reform with no ability for the assessor to use subjectiveness in individual cases is seriously restricting the life opportunities of these kids, is this really what you want??

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Soldier’s voice #2

Soldier certainly made me laugh today, he may be non-verbal but he knows what he wants!

I was recently updating his clothes for the summer, I thought lets be bold and get something a bit different from his navy, denim and beige trousers. Well if going to be bold lets not do it by half, so bright green (yes snooker table green) trousers were added.

Today being a beautifully sunny day in Edinburgh I thought it was time for them to have their first outing, Soldier looking colourful and bold in his green jeans and stripy top….

As we were about to leave for a walk to the park, Soldier takes me by the hand back to his bedroom, opens his wardrobe door, takes out a pair of navy cargo pants and pulls the green jeans down! Angel makes an appearance and comments on the situation ‘He not like them’..

The moral of the story, my learning disabled nonverbal son has better fashion taste than me! X

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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….

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