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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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Soldier, my inspiration!

imageAfter 2 broken iPad covers Soldier inspires me to design an iPad cover that is easy to hold and bounces if dropped!

Where do you start? – it’s been quite a journey! Design, IP protection, prototype, manufacture, stock storage, fulfilment and so it goes on….

So 18 months later on what feels like a really long journey #fatframe is born! Thank you soldier!

you can find out more at

http://www.fatframe.co.uk

You can also follow us on Facebook and twitter.

🙂 x

 

 

 

 

 

 

 

 

 

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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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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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Soldier’s voice #1

As many of us with kids on the autistic spectrum know there are so many different views of autism especially non-verbal autism. Some schools of thought are that children who present with autism, are non-verbal and appear to have severe learning disability are  just that severely mentally impaired. Other schools of thought are that the communication challenges presented with autism are masking the child’s intellect. Who knows? We can only make a judgement on our individual child….

I am reading a fabulous book just now called Carly’s voice. Some of you may have seen the video I’ve shared a couple of times about a severely autistic girl who learned to type on a computer to communicate and revealed that she actually had far greater intellect than anyone ever imagined…. The book I am over half way through has inspired me to start sharing some of the little things I observe in my Soldier that make me really think that his current ‘tag’ of severe learning disability is actually wrong – we just don’t know how to access him yet!

Soldier’s voice #1

Both Angel and Soldier love our iPads. It doesn’t matter if both have the same apps one will always be ‘the attractive one’. We have different coloured protective frames but I can’t imagine that’s the driver. Expect it’s just good old fashioned sibling jealousy!

Angel was happily playing away on the black iPad when Soldier decided that was the one for him! A tussle ensued with Angel protecting her hold of the much saught after device! Soldier tries various different angles to get it and eventually backs off…. Or so I thought! I then observed him go and find the bluE iPad and take it Angel and hand it to her in the hope that she’d take it then he could get what he wanted – the coveted black one! She didn’t fall for his little trick but it certainly made me smile! He’d thought it through and worked out a little tactic! Go soldier can’t wait to see your next attempt!

 

Www.carlysvoice.com  – well worth a read!