I wake to the screams of my eldest son 

Who’s only three

And my heart it just bleeds

Because it’s me that he needs 

But he doesn’t see me 


These night terrors have a grip

so strong 

I can barely lift him to my hip

And my lip 

It trembles


He’s so far gone

That he’s bordering on

Hysteria 

‘’Kai, mummy’s here’’

But he can’t hear 

And the fear 

Is clear

In my eyes 


This is happening night after night 

Within him this fight or flight 

Try as I might

I cannot stop it

And I don’t know why 

So I hold him so tight 


During the day my son is...quirky 

Positively perky 

He needs the same plate 

I have to open the baby gate 

Walking From the same direction 

He watches Wall-E, the same section

Over and over


And there’s no debate 

That his gait 

Is...different 


He’s obsessive and shy

And my eye

He won’t meet

When I speak 

He just repeats 

And he’s described as ‘off beat’ 


He’s not hitting milestones 

So I pick up my phone 

For guidance from the NHS 

The stress

Is like a weight on my chest

A vest

Too tight 

I can’t remove it 

Or sooth it

I fear there’s something wrong 

But I must be strong

For him


Months of tests and appointments 

Of hiding my disappointment 

When he doesn’t understand the instruction

A simple construction 

Of blocks 

The blue ones

But he doesn’t like blue

So he chooses

The red 

In my head 

I’m willing him to understand...he can’t  

So I take his hands

And ignore the burn in my tear glands

And we must wait........

...........So we wait


The letter arrives with the answer I dread 

My head 

It spins with the word I hoped I misread.....

Autism


What do we d.....

How do I hel.....

What does this me....

WHY HAS THIS HAPPENED TO HIM?!

Not my son, the beat of my heart 

My world has been ripped apart 

By just three letters.....


A.S.D


Autism Spectrum Disorder

Its confusing and scary

I even pray to a deity 

I don’t believe in 

To find the strength from within 

For him


I find it In knowledge

Book reading, course taking 

Even when my hands are shaking 

my body aching 

From the suppressed tears 

I dared let fall

I put my fists into balls

I make all the calls

I fill out the forms 

And I weather the storms 


A few years after that letter 

I got another one 

about Cayden, my younger son 

But this time the road was travelled 

That Autism horse was saddled 

And I wasn’t scared 

I was prepared


Having both my sons on the spectrum 

Has been hard in so many ways 

It affects every part of their days 

From speaking and eating 

Sleeping and meeting 

New people, it’s exhausting 


Their attention and comprehension 

Of social conventions 

Is poor

It’s a direct extension 

Of their inclination 

Not to learn about things that they don’t care about 


Autism does not discriminate....

It does not care about gender nor race....

It’s now much more commonplace 

And will cause you to displace 

Your sense of norm 

But what is normal anyway?.....


For years I questioned Why them?

And the simple answer is ..Why not? 


I love my sons, don’t get me wrong 

But some days I just don’t feel strong 

Enough to keep up the battle 

That I constantly have to face 

And sometimes I. just. need. my. space

 

Space to think and be..

Just me...

Space to calm my fears..

And wipe away my tears 


You see the biggest worry

Of an Autism parent is 

What happens to them after I’m gone 

Who will love them 

And hold their hands

When they don’t understand

Why mummy’s not here 

And this wasn’t her plan 


It’s 10 years on

And Im still learning 

To deal with the pain of yearning 

For what might be 

Without those two letters which contained just three. 

Autism Wessex is registered in England & Wales under charity number 1000792 at Charity Hub, Portfield School, Parley Lane, Christchurch, BH23 6BP. We use cookies to improve your experience using this website.
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