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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!

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Heartbreaking loneliness

I have to admit to feeling like a bad parent at the moment…..

Our Soldier has started to show some interest in interacting with our Angel but in true autistic style he much prefers his own company and in fact really struggles in normal noisy children’s company and takes himself off to a quiet spot. He certainly appears happy with his own company although I do always have a slight niggle that underneath the autism there is a little boy who wishes things were different….

Where I feel very guilty is that Angel really wants a wee pal to play with! I know most people reading this will ask themselves, what’s the problem? Doesn’t she have friends from nursery, school, locally? Parents of other children with learning disability will most likely be reading with a knot in their stomach.

In the early days when Angel’s difficulties were becoming obvious I was googletastic and read many times about how lonely life can be for special needs children. I’m not sure I really believed it as at that time we were part of a fabulous local mum’s group and another group of friends we made through NCT.  Angel was Angel, she was part of the group, never short of a play date. Her difficulties grew as the group grew up and whilst the other kids and parents didn’t really understand what it was like for us they were immensely supportive and inclusive.

We moved city before Angel was 3 and left behind those groups of friends.  Thank goodness for Facebook many of them remain my friends today but Angel and her wee pals have taken their separate routes in life…….

She often asks for someone to play with and clings to my hubby and I to interact with her, play with her dolls, pretend cook, do art, all the things that a normal little girl should be doing with her little pals…. It’s absolutely heartbreaking sometimes!

We have moved to an Area with quite a few young kids locally. It’s city centre though and a couple of streets away from one of Edinburgh’s large private schools so a lot of local kids attend there, a very different world!

When we moved here Angel attended a supported nursery place on the other side of the city and a private mainstream nursery near our house on a Friday. In the 2 years of nursery she was not once asked on a playdate or to a birthday party, already the gulf between mainstream and special needs was obvious.  Angel was well known and seemed to be well liked but she was different….. It broke my heart for her to be so lonely when she was still being asked to birthday parties back in Bearsden where we are from (although through time thatunderstandably stops as the kiddies move onto nursery and school, build their own sets of friends and we are no longer local). I’ve lost count of the number of times I have been in tears regretting the move away from our understanding and accepting network,

She has moved on to special school. Here I wished for another little girl like Angel that she could form a bond with. My eyes were opened quickly that the majority of children with additional support needs are actually boys. Angel joined a primary 1 class of 10, 8 boys and 2 girls. There are some lovely little boys in her class and she has had a few play dates which is good and one little boy in particular but unfortunately they are in different classes this year and see less of each other. In a special school the children are bused in from all over the City so even meeting the little boys is not straightforward.  The little girl in her class she has struck up a wee friendship with at achool and they greet each other with little hug. I have sent notes to the mum/carer, invited her on playmates/ to parties but she’s never responded. Another thing I have learnt along the way that sometimes the parent/carer of a special needs child has their own challenges and that you may never strike a relationship.

I continue to host birthday parties, Christmas parties and ask along friend’s kids, school class mates and Soldier’s nursery pals and it is lovely that there are some little friendships there in these settings.

What I long for though is for Angel to have a proper little pal or two that she so seeks….

I will keep searching for another little girl like Angel and hope they form a bond! My latest venture is to find an inclusive rainbow’s pack. Even that’s not as easy as if she was a mainstream kid, our local rainbow pack has said as she doesn’t attend the school she can’t attend,……

It’s my dream to see my Angel playing happily and growing up with a little pal. Something most people don’t have to think about, it just happens…….

Xx

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The truth about tiredness…

How many times have I heard friends moan they are tired as their little one has been up during the night sick or is having a phase of being up during the night… Regularly I take a deep breath whilst thinking ‘if only…’  I hope one day that never actually slips out! After all, relative to their normal life they will be tired and to be perfectly honest I wouldn’t wish our lack of sleep on any of my friends!

Angel is now 6 and soldier 5. For the first 3years after angel was born I lived with a constant headache through lack if sleep. For those parent’s reading this think back to the first 3months of parenthood and how tired you were waking up constantly through the night and even up all night quite frequently and imagine it never actualy stops… This is what we and many other special needs parents have to learn to live with.

A combination of both children requiring oxygen at night time and pulling off their cannula’s regularly, angel having ADHD and both having sensory processing issues including hyper sensitive to noise. What does that really mean though? It means

  • having to wait until the kids are asleep to put on their oxygen cannula then waiting again to turn the oxygen concentrators on so the air blowing up their nose doesn’t wake them up then up, down, up, down to reapply using the same elongated routine when they sense the air and pull it off!
  • Angel going through periods where the oxygen routine would be a welcome rest. At the height of Hyperactivity Angel can go 2 full nights up buzzing… As she doesn’t stay still for 10 seconds it’s like a hurricane has swept through our house. As she has learning disability and no safety awareness constant supervision is essential.. After 2 full nights of no sleep it’s like flying to Oz and back again the next day, jetlag city!! How Angel keeps going I will never know, she’s like the Duracell bunny!
  • Sensitivty to noise means – no kettles, tv on silent, no crisps, whispering… I’m sure you are getting the picture, if not they are up and the routine begins again…

I can only describe the permanent tiredness as like living with a hangover…

We can trully understand why sleep deprivation is a form of torture…a good night is 4-5 hours sleep and not necessarily all at once. Not something we would wish anyone else to have to experience but know many other families out there quietly cope with the same challenges too….

Sleep well tonight folks x