he is the most

beautiful

man in the

world.

when he laughs

i am happy

for him

when he sleeps

i am happy

for him

when he hugs

his mum and dad

i am happy

for them.

a stranger

may not see that

he is the most

beautiful

man in the

world.

to us

the world is

confusing

but to him

it is like

clouds

on a clear day

or blue sky

when it should be

grey.

his mum sits

on the sofa

crying

she is tired

because her son is

alone

not from lack of

love

but because his

burden

is to be

alone.

to be the most

beautiful

man in the

world

you must be

alone.

 his brother Victor

loves him

his brother cares

for him

when he cries

Victor says

mum

dad

Stanley is

crying

he cares for his

brother

he loves him

dearly.

to suffer this

a punishment

the rewards must be

great

a reward

unseen.

the boy

on his dads back

is the most

beautiful

boy in the

world.

sometimes you feel

that you want

to get

hold of him

to squeeze him

to squeeze him

so tight

that you might

squeeze out

of him his

condition

but this may also

squeeze out his

beauty

for he is the most

beautiful

man in the

world.

   Daniel Cockrill

Great news this morning, my friend’s autistic boy called her mummy for the first time ever - he is 8 years old.  Some parents of autistic children  never, ever get to hear that word.  I  am so pleased for them both.

A young friend of ours took him for a long walk after school last night.  On their return, after a few minutes standing next to me watching me cooking he said to me, “had a nice walk”!  I nearly dropped everything on the floor.

We were all completely stunned and happy that he should be able to verbalise something like that

Just reading a piece  about a new book called The Four Walls of My Freedom by a diplomat’s wife whose glamorous world changed utterly when she gave birth to a severely disabled son.

‘What matters for her son is to lead a life that is  full, interesting and exciting even if from a bed, and what matters for her is to be able to help him do that.  She acknowledges that some people don’t think this is important, because they don’t see her son as fully human.  “You can see people are thinking you should be going after what the rest of society believes has value and is profitable’. “I realised that to claim that my family should have the freedom the family down the street has, I had to make the argument that disabled people are of equal worth.  Then you couldn’t say the person who will never ‘contribute’ in conventional terms is a less valuable person”.

After seven weeks of school summer holidays and no help from the local authority at all since last November we are finally back at school. ( Must get back into fight  mode on that one).

He was very happy to go back and we have literally been counting down to this week since  19th  July.  Also, for the first time he wanted to know what was happening the week after this!  I think it might be time  to make a very simple diary for him!

Spent the day cleaning the house.  Two of those hours were spent hoovering and dusting his mattress, changing sheets and wet wiping every inch of his bedroom.  Have to do this weekly for him as he has a severe dust allergy – as well as the  hay fever, asthma, excema, peanut, latex allergy, (requiring an epipen!)  Of all of these allergies the dust allergy is a killer to stay on top of! I haven’t been so good this week and i can see the huge red circles creeping back again under his panda eyes.  Having to keep all the windows closed in this heat because of  severe hay fever  in this heat seems unfair but need to keep the pollen out. 

Ho hum, now to put his furry toys in the freezer – hoping there is enough room.  I will freeze those dust mites out if it is the last thing i do.  Oh, and not forgetting the pillows, chuck them out monthly and buy cheap new ones was the nurse’s advice.  Otherwise i have to boil wash them and they take hours to dry!

I’m going to  

Smash through all your barriers

Kick every one apart 

So nothing stands between us 

And I can reach your heart

I’m going to 

Scream away your silence

Destroy your blank disguise      

Paint the colour in your cheeks

Switch the light on in your eyes

I’m going to

Chase away each fear you have

Make them run and hide

Tear off all those Russian Dolls

That trap your love inside

I’m going to

Fill your days with sunshine warmth

Enough to melt the frost

And bring to you a childhood

Like it never had been lost

© Irene Ewen 16/08/09

…as I pen another letter to the Social Services who won’t even match the minimal  help  I was getting before I moved house.  Seems they must think that my changing post codes must mean my son has miraculously shaken off his autism and got better with age.  The social worker came round to interview me and fill in another Core Assessment – “what stresses you out the most she asked?” - “the constant fight with Education and Social services to get any support at all” I said- when I get the assessment back I see  she hasn’t written that  bit down.

“If a person takes no thought about what is distant, they will find sorrow near at hand”  If we  don’t think about the wider world, we will grow narrow-minded and sad.  That is roughly what Confucius was driving at in this observation.The wider world may give us cause for concern but at least it gives us perspective. 

.

I had the radio on in the car this morning and  heard that there is a new book out today about Charles de Gaulle.  I didn’t know that he had a daughter with special needs whom he adored.  When she died he and his wife spent a long time sitting by her grave until he said “Come, let us go from here, at last she is like other children…”