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Little rays of light

This morning Soldier lit up my world. Such small things to most families but such major communication for Soldier.

We have been away for a few days and since coming home Soldier had been getting up early.. so I have been telling him if it is still dark when you wake up go back to sleep…

So this morning he gets up and when I go through and tell him ‘it’s not morning yet’, he smiles at me, pulls his blind back and points to a crack in his shutters where sure enough it is brighter than his bedroom and he smiles….. I can’t help brimming with pride, super communication and yes, he was right ☀️

He is an iPad addict so the first thing he wants a in the morning is his iPad but he doesn’t get it until later in the day or as all of you with autistic kids know, he’d be lost to the world of his iPad and him….

We store the iPad on top of the wardrobe in our bedroom so it is out of reach. He has in the last few weeks worked out how to stand on the dining chairs. He knows no iPad in the morning so after getting dressed he comes into bed for a wee snuggle, we are still on holiday so no rush.. I head in for a shower and he pushes a dining chair through the house into our bedroom to the wardrobe, stands on the chair to reach the the iPad, and helps himself… sneaky! But great problem solving 😍 He may not be able to speak but boy can he communicate, love your Soldier 💕

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not such a happy birthday..

Here we are heading back from what should have been a bit of family fun to celebrate soldier’s 9th birthday but in true ASN family style it never worked out that way….

we should have left home yesterday morning all excited for our night away at our favourite hotel  instead Soldier was in serious pain his body trying to kick start clearing chronic constipation 

We should have been in the car heading North to our destination instead we were running a deep bath at home to help soldier deal with the terrible cramps he was experiencing and calming angel who can’t cope when her brother is upset

We should have been checking in to our hotel ready to go for a swim in the beautiful pool instead we were comforting our son as his body started a poo explosion 

We should have been relaxed, happy and getting ready for dinner where we had arranged a birthday cake for Soldier to make a fuss of him instead we were in the car unsure whether it was a good idea to still go away, hoping Soldier’s situation would clear and let him enjoy his actual birthday today, giving Soldier lots of cuddles 

We should have been eating a lovely meal together as a family instead we were checking in our room and running baths for Soldier to help with his situation 

We should have been having a nightcap reminding Soldier we have one more sleep before his birthday instead we are having room service deadly quietly as Soldier is so shattered he has fallen asleep on the bed 

We should have had a fab night’s sleep in big comfy beds instead we were up and down showering Soldier as his body did what it needed to do to clear what it had been storing, so sad for our boy and hoping it would stop and give him peace soon

We should have been having a slap up Birthday breakfast making a fuss of our boy instead he was totally shattered and needed some rest, his cramps slowing down leaving him wiped out

We should have been down in the outdoor spa that he loves so much singing happy birthday to our boy instead we decided to head home as he was still suffering and clearing…

So I write this my boy is beside me in the back of the car upset leaving one of his favourite places in between being upset from cramps… and it is his 9th birthday. It makes me so sad that with his genetic disorder comes chronic constipation.. we have tried many medications under gastro consultants and yet every now and then this awful, distressing situation still happens that I can only liken to watching him go through birthing type painful cramps 😞

So this year we will be delaying Soldier’s Birthday and making a big fuss of our brave boy on Saturday, love you Soldier, life is shit (pardon the pun) and you don’t deserve this……

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Sometimes it just hits home so hard!

Today has been a toughy! We said goodbye to our gorgeous little pup Cookie. It really brought home to me the impact that our kids limitations has on their and our lives. I don’t mind admitting it has been a day of tears.

Yes, she is only a dog BUT she was a little addition to our family that we thought we could have. She was a bundle of fun, love, companionship that was going to bring a new dimension to all our lives. Angel wanted to feed her and look after her and Soldier wanted to stroke her and play chase.

Sadly Soldier has asthma as well as his NALCN breathing difficulty and whilst our first week was great the last few nights have been awful for Soldier. Culminating in him being unable to breath last night by about 2am and him and I going and lying out in the car where the dog hadn’t been, he was still a mess. So Cookie has gone to a new (and very lovely) home. If I am honest I feel robbed, robbed of that little bit of happiness.

It brought home how much we have been robbed of…

Robbed of 2 healthy children….

Robbed of being able to do many everyday things never mind our dreams of great achievements for our kids.

Robbed  of more children healthy children ourself as we have such a high chance of another child having the same genetic issues – NALCN and TRAPPC9.

Robbed of the chance of grandchildren given our kids situation or unless someone takes advantage of Angel which is a very real fear.

A pet surely isn’t too much to ask….  alas it seems it is….

Life can be cruel, how is it decided who will be robbed of what really matters in life??  Continue reading

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When it hits you like a train…..

So you’re on the railway, it’s been a tough journey and you’ve finally got there then you see the lights coming towards you at the rate of naughts and ‘bang’ you’re hit….. Reality has just slapped you across the face….

Your child (Angel), that you have sought mainstream interaction for has just reinforced her difference! She doesn’t want to go to Rainbows for about the 4th week running. She doesn’t want to see her ‘friends’. She’s too tired. She doesn’t want to have fun….

Yes, I thought it would be great for her to have mainstream engagement with little girls (as it’s mainly boys in her class). All started well then she began to struggle and her behaviour became more hyper.. Now she’s refusing to go.

It defeats my purpose to push her to go after all it’s for her. Such a shame as she started off so well.

When your child has medical issues sleeping at night, when she’s up at 3am frozen as she can’t control her body temperature so she’s shattered in the morning, when she’s anxious as she’s not as able as other kids and she takes more time to process information and instruction, when she feels safe around her direct carers and adults because they are predictable imageI suppose I can understand….

I so wanted her to go along and make a little friend or 2 her age but seems that was a bit of a pipe dream.

I wish we were merrily travelling along the same train line as everyone else but instead we are stuck on the sidings watching the happy passengers whizz by accepting we will never be on that journey……

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Heartbreaking loneliness no more – for the kindness of a friend…

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Was not so long ago I posted about how heartbreaking it is for Angel who would love friends to be in an environment where that wasn’t possible.

A friend I made since coming across to Edinburgh messaged me on the back of that post and offered a play date with her daughter who is the same age as Angel, in mainstream with high performing autism. Oh yes please! But of course it’s down to the girls if they want to spend time together.

What a success (and thank you to the wonderful mummy for making it happen!).

The girls started with music dates at our house and progressed to girly play dates with nail polish and make up and yesterday baked together at Angel’s new friend’s house. It’s beautiful, they are so undemanding of each other. If one wants time out the other just carries on, it’s so normal in their world. The smiles on their faces say it all 🙂

I can’t tell you how happy this makes me. My Angel enjoying time with a little friend, the friendship that she has sought for so long.

I know this makes me sound like a dating matchmaker but I’m constantly on the look out for other little friendships for Angel. She’s pretty unique, more verbal than most of the kids in her school, very few girls in school as well, but way less able than mainstream kids. Finding her play date matches is not so easy. Long may this lovely little friendship last! Xx

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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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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