Joy

Sadness

Pride

Loss

Love

Exhaustion

Strength

Empathy

Admiration

I feel it all and more!

I also feel fear or is it some kind of need or determination for something I know is impossible?

Completely impossible but here I am wanting and needing it because what else can I do!

My gorgeous, dear son will need care for the rest of his life, he doesn’t have the option to choose his own house and make it a home, he’s not going to be able to experience fatherhood and the love a parent feels for a child. My son isn’t going to be able to devote his life caring for his family, instead he will be the one needing the care.

I fear the future when my son will need staff to care for his needs, when he lives in a home filled with people that are paid to care for him instead of family that want to care for him.

Will staff be coming and going?

Will they understand him?

Will they know the way he likes his food cut or know the trousers that are his favourite?

Will they be able to read the signs his hands make?

Will they let him touch their faces in that tender way that says “I love you “?

What if someone hurts him and I’m not there to protect him?  That thought breaks me then stamps on my crushed heart.

Will they see him the way I do and melt at his smile, that smile is the cure to everything. The way his whole face lights, a drip of warm feeling,  a dash of heavenly joy and a squeeze of happiness.

So you see I have this need, pure determination to live forever.

I have to always be here to care for him and protect him, I can’t leave that smile and heart of golden innocents.

I eat healthily and exercise in a blind hope of preserving my health.

I stand here fighting the impossible fight that isn’t even a fight really, it’s just the circle of life.

My eldest son tells me, “Don’t worry mum, I’ll care for him.”

“I know you would” I reply, “but one day you will have a wife and family of your own and I could never expect you to be your brother’s carer, he needs you to be his brother and love him.”

I’m not going to live forever here, even Lord Voldemort didn’t manage that.

I can look after myself to keep me here with him for as long as I can but then what?

The only answer is to come to terms with my son being looked after by others. To trust others to be his everything.

We have already started respite, allowing him a day or night sometimes in the care of others.

Preparing us both.

He’s creeping towards being a teenager, some have said it’s the crucial time to start adding outside care into his life. I still feel torn yet I know I’m helping him adapt for the future.

Maybe this is my subconscious back up plan, maybe it’s the sensible bit at the back of my mind saying “no one lives forever”.

Now, as a lot of you may know a few years ago Santa decided it would be a great idea to send some of us young elves out to mingle with the human children.

The idea was to learn from them, that they would teach us the true meaning of Christmas!

For us to see why it’s important for us to work so hard.

We are to move unseen while spreading Christmas happiness, maybe a few cheeky games – after all we are elves!

But I most definitely did not make flour angels or throw bread to the ducks in the bath..nope, nope not me!

I may possibly have wrapped the TV…

…Hahaha yeah that was funny.

The biggest rule we must follow is to not get touched or we lose our magic.

Five years ago I heard about this one family, one of the children is autistic and he would not be able to understand why we can’t be touched,  it would be distressing and confusing for him but I couldn’t ignore him, I couldn’t leave him out!

I’d watched this family and knew they needed some extra Christmas magic.

They deserved it.

I knew this boy and his brothers had so much to teach me, the purest hearts with magic shining in their eyes.

How can young minds be so understanding about things that I’ve seen adults struggle with?

They had the power to speak with no words…I was hooked – I had to be with them.

Speaking to the big jolly man himself he agreed I had to go to this family, Santa found a way but I can’t tell you how!

That’s a secret!

Five years on and these children still amaze me.

That boy still has no voice but I do hear him!

If someone can’t use a voice to say what’s inside,  it doesn’t mean that they have nothing to say, no it means we just have to listen a little deeper, take the time to help them release the magic from within.

You see if we look over a beach of pebbles, each one different yet each one smooth and shiny as the water washes over them.

Moving together, comforted by the understanding of the other pebbles.

Then hidden amongst the pebbles lay shells, different from the pebbles yet striking!

The water washes over them rippling through the shells groves, the shell gets caught by the waves sometimes putting it off balance, looking a little lost and different to the rest of the beach.

Then if you pick that shell up and place it to your ear listening carefully, you may just hear something truly beautiful.

If you have an elf at your house say, “hello,” from me.

Have a great Christmas everyone.

Love Albert x

I am NOT glad my son is disabled.

That would be ludicrous!

If I could take away all the pain and fear, anxieties and outside ignorance then I would in a heartbeat!

But that is not possible so instead I look to the positive.

I’m not the mother I envisaged I would be,  I thought I would be spontaneous, cool  (hopefully I’m still a little of that, possibly) whizzing my children off here and there for new adventures.

I still take my children on adventures but with routine in tow.

But this old vision was from the young, pre children version of me, before I knew my path was going to be a whirlwind of bumps and cuddles.

I like the mother I’ve become more than the one I thought I was going to be.

I’ve discovered patience I never knew I had.

I’ve learnt to see beauty in things I may previously overlooked.

I have empathy flowing from every pore because I now ‘get it!’

I really really get what people are feeling because the chances are, I’ve felt that too at some point.

I now don’t care for the perfect ideal, instead the real!

But even more than that, even bigger than the changes in myself.

My typical children are growing up seeing a disabled person not as a disabled person but as a person.

They will have watched their parents deal with more than possible at times yet stand together.

Witnessed as a person falls to their knees exhausted with carrying a heavy load, instead of walking past with eyes to the ground, we hold out our hand, let them lean on us until they can stand then walk together.

This little lad that came into our lives 9 1/2 years ago and turned our everything not just inside out but up, down, spinning in circles and zig zagging off to crazy land.

He’s been a beautiful blessing.

He has no verbal voice but teaches things of such value.

He has a vision impairment but sees the beauty in the mad world we live in.

When caring for a disabled child it’s all consuming so it can feel impossible at times to look beyond what we have to do everyday.

It’s easy to get lost in the mass of hospital appointments, meltdowns, medical care and ridged routine.

Yet in between every rocky mountain is a breathtaking ravine.

A phrase that doesn’t quite cover all the feelings inside and out.

That phrase is, ‘All touched out’ .

I breastfed all three of my children for long periods of time, my youngest being the longest.

It was truly amazing to see them grow and thrive while I was doing what I felt I was made to do.

But towards the end of my youngest child’s feeding journey I started to get the feeling of being ‘All touched out ‘ .

I had a river of feelings and emotions flowing through me making me confused and on edge.

I’d never felt this way before.

I knew how much comfort my child felt by feeding from me but I also knew we had done an amazing job to get that far.

I had this feeling following me around like a shadow, a feeling of wanting to be away from everyone,  it was so strong I even wanted out of my own skin.

A cloud of demands silently above me.

At times I’m reminded of this feeling but for a different reason.

As I said I have three beautiful children, each different yet amazing…my nine year old son is severely autistic, a non verbal ray of sunshine.

But it’s not easy caring for a disabled child. I wouldn’t say it takes a special kind of person to do it because I’m not!

Far from it, I’m just a normal mum doing my best.

I do school runs, housework and cook, even walk the family dog. Just like every other person. Then I have other things to do like a constant stream of appointments to organise, prepare for and attend.

Mountains of paperwork to organise from therapy reports to EHCP.

I lift his wheelchair from the car and change nappies of a growing lad.

I deal with meltdowns and my sons self-harming.

I’ve learnt sign language and tried to teach my son to sign some words.

Ordering adult sized nappies and therapy aids.

Helping my other children cope with their own emotions of having a disabled brother. .

Like many mothers in my position I’ve put this pressure on myself to be the perfect mum and keep on top of the house, family life and being a good wife while being a good carer.

Beating myself up if a job gets missed, yet always having a smile on my face as I couldn’t bare if people saw how tired I was.

How ‘ All touched out ‘ I was feeling from the pressure and demands of being a mother and a special needs parent.

But you know what?  I’m tired of trying to be the perfect mum!

I am a good mum!

I make mistakes and do things wrong at times.

I forgot jobs and even the odd appointment has slipped my over crowded mind but my children are cared for and very much loved with everything that I am.

So who cares if I didn’t do any washing yesterday or my children had a chip dinner Monday because I was exhausted.

So what if I don’t get a chance to hoover today or I forgot to order more nappies?!

I’m still a good mum, my children are still cared for and smiling.

My son’s care matters a whole lot more than hoovering and dust.

And maybe one day I’ll put into practice what I so desperately want to do.

Ease the pressure I placed on myself and be happy with just being a good mum.

My heart sinks when people conjure up the wrong image of, “autism”.

Someone, ‘quirky’, with struggles, but in the right environment they can do OK, maybe even discover that special gift that is associated with autism.

But that’s not my son’s autism.

Then when people finally meet my son, I see it hit them, yeah you weren’t expecting that kind of autism.

My son is the other kind of autism, the severe kind that people find hard to understand.

The kind that when he’s making his noises in public people divert their eyes because they don’t know what to do.

Or worse, they stare!

My son doesn’t speak or play with friends, he wears nappies and uses his fingers to eat.

His hands and legs don’t work that good.

He screeches and makes random noises.

Flapping and stamping his feet.

My son is nine years old but inside is still only one.

Yes that kind of autism.

When he was little he never smiled or responded to people, so when strangers smiled and said hello to him they would quickly give up because they got no response.

That’s my toddler you gave up on.

It might not show but he can still hear you.

He is the child that doesn’t get invited to parties or play dates.

The child people stopped talking to because they gave up.

The child that had no other option than to attend a special school.

His home is filled with disability aids, sensory toys and a wheelchair.

For a while I felt crushed when the conversation turned to autistic people having special gifts.

Like it was something that was expected.

I was even asked on numerous occasions what his gift is!

“Oh, he is a gift – to me”.

But he does have a gift.

A beautiful, magical gift. The best kind.

His smile – it’s like a magic potion, one of those smiles that takes me away from it all, that makes everything OK.

It melts me and heals me all at the same time.

A smile that clears my view so I can see the stuff that really matters.

My son has that kind of autism and the most perfect gift.

Will I ever sleep again?

Will I know how to react if my son is unwell?

Will my built in feeding devices ever stop leaking?

But, ‘Will my child ever talk?’ was not one of them.

My first son did talk, from a very young age he had a severe case of verbal diarrhoea (but it was pretty adorable).
When I fell pregnant again it never crossed my mind that it would be different this time.

Then during my twenty week scan abnormalities were found on our baby’s brain. We were told that our unborn child would have learning difficulties of some degree, probably Down’s Syndrome, but without invasive testing they couldn’t tell us anymore.

I knew the risks of those tests and whatever answers they would give would change nothing.

So instead we started on our unknown path.

Now even at this point it never occurred to me that I wouldn’t get to hear my child’s voice or that I would learn a whole new way of talking.

At eight months old my son called from his cot “mama”.

We all know the feeling when we get that first word. It’s beautiful.

But I didn’t know then that it would be years before I heard that again.

My son is nine years old now and recently we have been blessed with the words “mama ” “dada ” and even the word “no” (oh I love that one).

At times I’ve felt overwhelmed by the thought that my son may not get to make a phone call, sing along to a song, shout at me or call our family dog. And how cruel it seems to have that taken away from him.

I look at him and he smiles, moving his hands into the few words that he’s learnt.

My son with no voice has taught me whole new ways to speak.

His hands making signs, him guiding me to the thing that he wants.

He lifts his hand and moves my face to look at him, into his beautiful eyes.

I can read his eyes now, I can see his desires and needs, I witness his joy and feel his pain.

Sometimes I lose my beautiful son behind those big blue eyes but my eyes search his, eagerly waiting for his return.

It’s not about what we don’t have!

It’s about the magic and the strength of a little boy who found us a new way.