Home business, home education and health challenges: what makes us tic?

A little while ago you may have seen me ranting away about how impossible it is to be joyful while trying to eke out a living on a shoestring budget.

*Sigh*

I’ve mentioned before about how I’ll start a blog with good intentions, then descend slowly into a narcissistic spiral of self-pity and misery, and eventually shut it all down.

It’s a little bit juvenile. *Blush*

I realised I need a brain reset.

Proverbs 23:7 – “For as he thinketh in his heart, so is he”

As long as I keep thinking of myself as an impoverished, helpless victim of my circumstances, that’s precisely what I’ll be. My Father is the owner and creator of all things, and abundantly wealthy. He promises to meet my needs.

Essentially, this means I have what I need, since He is faithful. I just either haven’t realised it, or I have squandered it. Knowing that I have what I need makes me more mindful, more aware. Living a life of abundance in the peace of this certainty makes me more productive and fruitful.

Here are some interesting thoughts on the subject, that are really helping to focus my personal growth:

 

Goldilocks and her Monsters

There are monsters in your closet.
It’s true.
They’re your closest friends, and you are not afraid of them.

I love that about you.

Today you invested all of your body and mind,
for most of the afternoon,
in overcoming your fears.

I was awed.

And you won: the fear is yours now.
You own it.
It does not own you any longer.

Each day you learn more about yourself,
And more about us -
These strange creatures, looking in.
We gawk, like visitors to the zoo,
at the amazing creature behind the bars.

But who is really caged?

The exquisite, tow-headed bird, mastering the power of flight?

Or we small-minded pedants,
with our limited vision of the universe,
trying so hard to measure you – to understand you -
with our utterly inadequate tools.

I love the rages.
I love the calm.
I love the monsters who cause you no fear.
I love the fears which come without monsters.
I love watching you navigate these roiling waters.
I love seeing all the treasure you discover in these deeps.

I love you.
All of you.
Darling you.

my little girl

Tortoise Child

Long ago, before you were born, you had a name.
But the name was not yours.
It was ours: your Dad’s and mine.
It was our deepest hope.
It was our greatest fear.
It was our impassioned promise -
To each other …
And to you.

Tortoise Child.

Long-lived.

Rich gift, full of days.

We wished it.

We bequeathed it to you.

When you were here,
and grown,
and could speak,

you did not like it.

The sound was pleasing …
But the meaning was not.

Your perfect nose crinkled in its perfect way.

“Tortoise child!”

You almost spat the words
in that sweet, refined, disgusted way you sometimes have.

“Why did you call me that?”

Because we  love you utterly.
Passionately.
Before you were here,
You were you.

And we have loved you.

We want never to lose you.

And that’s why we gave you the name …

With the hope ….

That in giving the name,
we were giving the thing itself.

Long life.

And now you have the name ..

And now you love the name.

You say that you intend to live up to it.

Perfect.
I have lived to see my wish granted -
short of days as you may be,
so far.

My precious Tortoise Child.

Melt-down moments

melt-down days

Melt-down days. Some days just are.

Goldilocks shoots me a glance pregnant with panic. She starts to breathe deeply, often triggering a tic storm as her Tourette’s tries to accommodate the compulsions of her Asperger’s. She clasps her hands (or mine, if I’m close enough).

Her hands are icy cold. A faint sheen of sweat has made them clammy, the same sheen adorning her brow.

She is very pale. The breathing intensifies as she tries to soothe herself. Where on earth have we left Papuli, her blanket?

She jams her palms into her temples and screws up her eyes. “My head HURTS!”

It’s so hard to be quiet.

It’s so awful to be heard.

Why are there so many people?

Papa Bear snaps, “What’s the matter?!” His reaction is laden with concern. All Goldilocks hears is anger. She believes she is wrong. Bad. In trouble.

“I hate it when people snap at me.” I can hear the tremor in her voice. I know what’s coming.

“It’s okay, baby. You’re fine. He’s not cross. No one’s angry with you. I understand. You’re not wrong. It’s okay.” I trace patterns on her back as I whisper gently into her ear. I wrap my arms around her tiny shoulders and gently, sooo gently, rock her. I whisper to her. “You’re fine. It’s okay.” My fingers finds the golden curls at the base of her neck and I curl them into patterns. “You’re okay. It’s going to be fine.”

Sometimes it is.

Other times …

“I need space!” (This is when the trigger came from me). “You just don’t understand Asperger’s as well the doctors at the hospital!” (Well, yes).

“Go to my room and let it out, baby girl.”

She runs wildly. That low muscle tone is doing her coordination no favours.

The bed takes up most of the room, and it’s good, because the red-blinding rage that swells through her like an angry ocean means that the chances of aiming accurately are slim. She slams into it.

The sobs that wrack her small person are violent and heart-breaking. She can hardly breathe. Her cries are loud, angry, savage.

A tic storm joins the fray and she shudders. Impotent fists pound the bed. Tears drench my pillows and remind me why we never did get that lovely jacquard I’d coveted. Her frustration finds its angry way into the heart of my cushions. Do they smell like me? Is it comforting?

She cannot catch her breath. Her efforts are brave but it needs to come out.

After a while I join her. I stroke her back and play with her hair and tell her it’s okay. I wrap Papuli around her worn out self and hold her as she sobs the last of it away. We talk it out (and sometimes it starts again. Why is the world so damn unjust? Why do some things make so little sense? Why can no one see what she sees? Or at least be kind about their blindness?)

I’m talking about melt-downs.

If you have ever had any experience with Asperger’s Syndrome, you’ll know what I’m talking about.

I always know when it’s coming. I don’t always know how to prevent it. In fact, often as not, I’m the cause … yet Goldilocks is almost always gracious enough to allow me to be part of the solution.

It starts long before these “symptoms” manifest. By now, for the most part, I know the triggers and I can predict the pattern. Waking up at dawn, alone, while the rest of us sleep. Trying to rouse Red Riding Hood (a lesson in futility if ever there was one), and failing. Being teased (sooo gently) for not making coffee for the rest of us. Pissing off the bearded dragon when all she wanted to do was say hello. A scratch from the cat. Slow internet. Changed arrangements. Someone has failed to play by the rules. Someone has raised their voice. Someone has been unfair, unkind, unreasonable. Something has broken. Something didn’t go according to plan. A project refuses to cooperate. Mama insists on doing Maths today, despite the clear indications that today is Not A Maths Day. Or maybe a balloon popped on the other side of the shopping mall and it was unexpected and the place was full and crowded and noisy and bright and chaotic and incomprehensible and Just. Too. Much.

That’s how it goes some days.

It’s Official

So.

My girls are autistic.

“High Functioning Asperger’s Syndrome with generalised anxiety disorder, precociously advanced speech and low muscle tone. And significant IQ.”

Obvs.

Is it wrong that I’m proud? And vindicated?

And just a little in my cups?

#TwoHoursSleep? Probably not THAT smart …

I am a workaholic.

I validate my existence with work. Be it home educating the girls, washing the dishes, or earning a living.

If I don’t work, I don’t feel that I have any worth. None at all.

Since I no longer have bosses or a management structure of any kind to confer worth upon the work I do in the form of praise, positive assessments, awards, promotions or bonuses, the only measurement tool I have is money. If I work hard enough, if the work I do is good enough, I will get paid. If I get paid, I have worth.

If not, I don’t.

While my head tells me that, logically, this is folly, the rest of me blunders on.

I need to work.

Work supercedes every other thing I need to do – family, friends, social commitments, health, sleep – everything is secondary to my secret obsession. Except it’s not so secret.

I have no idea how to break the cycle.

Any suggestions?

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