S is for Sleep

That was back in the day when Lucy was a baby and her sleep patterns (as scattered as a crochet one) allowed me to at least cat nap.

I never, ever had what other mums lovingly referred to as the, “golden two hours”, in the afternoon when their cherubs slept. I hated them for even mentioning it.

A whole two hours? In one go? At the same time every day? Don’t be stupid!

If it wasn’t the regular night time feeds waking me up, it was the colic (that was a trying time).

Next came the whole day/night confusion thing.

Then the sensory deprivation phase followed swiftly but thankfully briefly by the separation anxiety – a few weeks of realising that the mummy she’d left downstairs was not the hissing mess that came to see her in her room, knocked that one on the head.

We tried everything, from the Gina Ford (I’d punch that woman if I ever met her) method to, “soothing”, lullaby lights and sounds which did anything but what they promised.

Once she was finally off to the land of nod, we’d have to perch on the sofa downstairs.

We kept the TV on low and would creep about at bed time because even though she could sleep through a storm, a mouse fart or that squeaky top stair woke her instantly.

Then an argument in raised whispers would ensue whilst my husband and I blamed each other for waking her.

The toddler years were marginally better until when she was two and a half, an evil being crept into our house and invaded Lucy…

Epilepsy. Nocturnal epilepsy.

That first night was the start of a new threat.

Even though she grew into sleeping better, it ruined any hope of it for us from that point on.

Sleep became a shadow of its former self. Some part of us never allowed ourselves to be fully taken into its arms and rested.

Every sound made us jump, every whimper or whine shot us out of bed to check that she was alright and not having a seizure, or choking, or not breathing.

Every time we had to call an ambulance in the night and go to hospital, blue lights flashing, we left sleep at home, sometimes for days on end.

Any sleep we did get at last was filled with vivid dreams and more than a few times I actually awoke having a panic attack.

Thankfully, an amazing family whose own son has severe epilepsy, developed a wearable epilepsy alarm which senses the raised heartbeat that happens just before a seizure.

The Pulseguard by Adris Technologies, has given back our permission to sleep, even if madam still has times when she doesn’t give it and stays awake all night.

We can trust that the Pulseguard is watching over our daughter for us.

These days I go by the Army motto, “Eat when you can, sleep when you can,” which as the latter is still irregular has just resulted in me becoming a bit more beach ball than beach babe!

Why I No Longer See the Autism in My Autistic Children

I see very clearly the difficulties in communication, the very real challenges with social situations, and even the lining up and flapping.

They haven’t suddenly developed eye contact and their sensory issues are still very apparent.

They still very much watch the same few seconds of videos over and over and need prepared even for the simplest of transitions.

Yet to me those things have become so much a part of my children that I no longer see them as autism: I see them as characters of Naomi and Isaac.

I understand why parents want answers and become concerned when they see their child having social difficulties or becoming obsessive over something.

I understand the fear that rises up when your child is not speaking or has severe anxiety.

I get the stress of having a fussy eater.

I know that people need answers.

But the other side to that is that so many of us have traits of autism and most children go through stages of ordering or lining up toys, repeating words or phrases they like or preferring to play alone.

Millions of children are fussy eaters or don’t like wearing certain things.

These are all things that make us unique and individual and something to celebrate. 

Almost three years since my daughter was diagnosed and I have learnt to love and respect the lining up and ordering.

To me it is just her wonderful way of making sense of things and I have no issue with that.

I embrace her obsessions and loves for what they are: her hobby and way of escape.

I adore how she sees the world in black and white and takes language literally.

She teaches me another way to look at things.

What others see as autism, I see as her personality and character.

Four years and two months since my son was diagnosed and although he has very significant needs it is all just part of who he is.

He can not speak at almost eight but that does not stop him finding other more inventive ways to communicate.

He adores lifts and mashed potato and the colour red.

He chews teddies, flaps and rocks and struggles to sit still.

All of these things are just part of who he is like his beautiful brown eyes, rugged stature and handsome features.

He is Isaac and autism does not define him.

For example even if he was not diagnosed he could easily still love mashed potato for dinner like so many other children.

In fact he has a passion for hand dryers that is very much NOT in keeping with most autistic children who hate noise.

My children are who they are.

I see them as beautiful, clever and unique individuals with their own distinct personalities and ideas.

The way they think, communicate and play is all part of who they are and it is impossible to separate their character and personality from the autism.

Other people look at my children and the first thing they see is autism.

I look at my children and just see Isaac and Naomi. 

Special Needs Mummy Shoes

I have noticed a trend of late.

There are many, what I call, “Mainstream”, mummy bloggers out there.

The ones who write, most bravely and openly, about how hard parenthood is.

How much gin/wine/Prosecco/vodka/lighter fluid it is necessary for them to swill, in order to cope for even part of the day with the tribe of little monsters/sh*ts/demons that fate has seen fit to saddle them with (funny how few of them seem to have ‘children’). 

Well now, I thought, being the compassionate soul that I am, I have the perfect product to lend help and succour to these poor, benighted, suffering women in their hour of need:


Walking just one mile a day in Special Needs Mummy Shoes brings:

The ability to endure a full day* of parenting without the need to resort to alcohol OR coffee, tea, any kind of food, toilet breaks or sleep! (*A day may last anywhere from 18 to 72 hours)

Amazing clarity of vision – allowing the wearer to see the difference between a toddler tantrum and a full-on sensory meltdown.

A new, improved sense of perspective – bestowing upon the wearer the Zen-like realisation that the prospect of not getting the school place you want is not a life-or-death situation.

The ability to become a self-taught medical expert and education specialist, whilst also managing medication/equipment, therapies, outpatient appointments, hospital stays, review meetings, work, study, marriage, other children, household management and sleep deprivation.

Vastly improved olfactory function – put them on as soon as you wake up and you will not only be able to smell the coffee, but also the bed of roses you’re lying on.

Yes! Just ONE measly mile a day in SPECIAL NEEDS MUMMY SHOES guarantees instant relief from whining and self-pity.

SPECIAL NEEDS MUMMY SHOES – brought to you by ExtremeParenting.me

I know, I know, I shouldn’t judge: everyone is fighting a battle others know nothing about. I shouldn’t have to point out that this post is flippant and not intended to be taken seriously, but I will, because there’s always one, isn’t there, who misunderstands the concept of tongue-in-cheek, and gets their head stuck right up their fundament (not that cheek, dear!).

It’s been a long day, but, I am pleased to report, I have managed to write this post using very few swear words, and whilst drinking nothing stronger than a cup of lemon tea.

I’ll never make a, “Mainstream”, mummy blogger, will I?