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Your kids must be so excited about Christmas…..

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It’s that magical time of year when children all over the world are getting excited about whether they have been good enough for Father Christmas to come to their house and bring them the latest toy or gadget they’ve seen on the TV or been talking to their friends about. Yes Christmas is definitely a wonderful time of the year for children. Most of them that is….

For a small group of ASN kids and young people this amazing time of the year just passes them by… And not to sound self pitying in any way but as a result it is a very different experience for their family too.

In this world simple things that are just the norm take a whole different form:

Norm: my little one is so excited about Santa
In this world: my little one hasn’t got a clue who Santa is or what Christmas is….

Norm: my little one has been talking non stop about that toy of the year that I just can’t find anywhere. They’ve written it in their letter to Santa.
In this world: I don’t have a clue what to get my little one as they don’t really play with toys….

Norm: didn’t they just look so cute at the Christmas party, it was so lovely to see them all so excited when Santa arrived
In this world: my little one was in floods of tears as he/she couldn’t cope with the sensory aspects of so many children and so much noise. They were terrified when Santa arrived as to them he’s a massive big man with a scary white beard….

Norm: Christmas Carols on Christmas Eve getting excited about being asleep when Santa arrives, Listening for his reindeers and sleigh, popping a stop here sign in the garden, leaving a carrot for Rudolph and snack for Santa
In this world: too many people and being out of routine for Christmas service is just too much for our little one. Why would this evening be different from any other, a normal day, normal routine, usual things….

Norm: getting up on Christmas morning super excited to see if Santa has been and ripping off the wrapping paper to see if Santa has brought what they really really want!
In this world: it may not even register they are presents and as for the wrapping paper that will be a parent hand over child’s hand to help them rip it off. Then maybe they may play, maybe not….

It’s funny how something so magical can be so different. Of course families living in this special little world still do all the usual things but know that maybe if they are honest they are doing it a little bit for themselves as parents and a little bit because in this special world children do surprise you and who knows what they’re really aware of.

Enjoy Christmas everyone whether you are living in the norm or in this little world it’s a very special time of the year. Hold your family close and savour them for what they are xxx

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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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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 😦 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 😦 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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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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A step into mainstream

What a lovely phone call to receive this evening. Angel has a place at one of our local rainbow packs! Max 15 girls in a local school 10 minutes walk from our home, I couldn’t be more delighted!

Our first experience of a local pack wasn’t great – a ‘closed shop’ so Angel wasn’t welcome, tonight’s call though so much more inclusive, assistant brown owl is a teacher and has special needs experience.

Her first session is in 2 weeks time after the May holiday. 6pm which is late for Angel but on a Monday when she shouldn’t be so tired. Now to start reading social stories to prepare her for what Rainbows is…

A new experience coming up..

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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??