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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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Not a budding children’s author with my nightime writing!

For nearly 2 weeks over Christmas we had to stay up at night and watch Angel sleeping in case her tonsils blocked her breathing until she had her tonsils removed on 3 Jan – that’s a whole different blog!

How do you stay awake?? Well I decided to enter a mumsnet competition to write a short story about animals, the prize to be published in a McMillan book and have your story illustrated. Perhaps writing when half asleep having been up night after night was not very sensible but it gave me focus for a couple of nights.

Over 600 entries and I didn’t make the short list but I did manage to stay up and ensure my Angel could breath so success in one field.

Anyway I thought I would share, enjoy me little rhyme/short story – the theme had to be an animal!

 

Sam searches for food
Sam Sea Lion was finished work
After his safari park beat Catching balls and other tricks
So hungry he needs to eat

Sam got up, and headed off
As fast as he could go
To see the meerkats eat their food
And fill their tummy so….
                                                               
The meerkats they were guzzling
on insects, dirt and worms
Sam said yuk, I can’t eat that
Your food it makes me squirm

Sam got up, and headed off
As fast as he could go
To see the pandas eat their food
And fill their tummy so….

                                                               

The pandas they were chomping
on bamboo leaves and shoots
Sam said no, I can’t eat that
Your food tastes just like old boots

Sam got up, and headed off
As fast as he could go
To see the hippo eat her food
And fill her tummy so….

                                                               

Hippo wallowed in the lake
Gobbling up water plants
I would like to swim with you
But as for eating that I can’t

Sam got up, and headed off
As fast as he could go
To see the tiger eat his food
And fill his tummy so….

                                                               

The tiger he was biting
Antelope for his tea
That’s my friend, I can’t eat him
Tiger food is so not for me

Sam got up, and headed off
As fast as he could go
To see the bats eat their food
And fill their tummy so….

                                                               

Bats flying in their dark cave
Swooping down to catch some flies
No way could I do that

I just cannot jump up that high
Sam got up, and headed off
As fast as he could go
To see the bison eat his food
And fill his tummy so…

                                                               

Bison he was chewing on
Lush green grass straight from the ground
How boring that must be
Even though there is lots around

Sam got up, and headed off
As fast as he could go
To see the rhino eat his food
And fill his tummy so….

                                                               

Rhino he was foraging
Every single but of a bush
He will run after me

So please do not disturb him Shoosh

 

Sam got up, and headed off

as quiet as he could go

To see the monkeys eat their food
And fill their tummy so….

                                                               

 

 
The monkeys they were peeling

Lots of fruit and nuts yummy

Fruit is good for me but

It does not agree with my tummy
Sam got up, and headed off
As fast as he could go
To see the giraffes eat their food
And fill their tummy so….

 

                                                               

Giraffes they are stretching up

Easting leaves from up on high

Chomp chomp from the branches

How would I get up there? oh sigh

Sam got up, and headed off
As fast as he could go
To see the snake eat his food
And fill his tummy so….

 

                                                               

Slippery snake slides along

And with forked tongue eats a rat

Eeee Eeee your food still squeaks

Oh snake, how can you eat that

Sam got up, and headed off
As fast as he could go
To see the Ostrich eat her food
And fill her tummy so….

                                                               

Wow you are very big for a bird
Walking through and eating grass
Gracefully pecking through it
Not for me, I think I will pass
Sam got up, and headed off
As fast as he could go
To see the zebra eat her food
And fill her tummy so….

                                                               

 

 
The beautiful stripy zebra
Daintily eats flowery plants
Why would you eat such pretty things
Flowers are on dresses and pants

Sam got up, and headed off
As fast as he could go
To see the chimps eat their food
And fill their tummy so….

                                                               

Hoo hoo call out chimpanzee
Tucking into lots of figs
That is a lot of food
You eat even more than the pigs

Sam got up, and headed off
As fast as he could go
To see the lion eat his food
And fill his tummy so….

                                                               

He is king of safari

Sam watches safely from far

Lion rips up his meat

Same moves fast when lion roars Rharrrr
Sam is up and heads straight off
As fast as he can go

To see the penguins eat their food
And fill their tummy so….

                                                               

At last they eat the same as me
Munching on fish yum yum yum
Can I please share your grub
I’d love it in my empty tum

Sam got up and headed in
To join the penguins meal
Lots of different types of fish
So happy Sam could squeal….

sammy seal

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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