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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 😪

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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. 🙂 🙂

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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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