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

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?

just sayin’ …

2851405-drwho“Oh Mama, pleeeassse can we watch another episode of Doctor Who? Please? Just ONE more … then story time.”

My darlings so badly wanted to spend some more time on that couch with me. It was cosy and familial and wonderful.

“I’m sorry, my love, but I have to work.” (One day, when they write their autobiographies, this will be the title. I’d wager money on it if I had any).

“It’s Sunday Night! Can’t your client wait until tomorrow?”

Fair point.

“The work is already overdue. I have to finish it tonight. It’s hours of work and it’s already late. I really should get to it now and not debate the issue with you.” (It’s just so warm and snuggly under the blanket, a daughter on either side and a fire gently snoring in the hearth. I’d rather be debating bed times than working, it’s true).

All at once, something new glinted in her eye. “When were the deadlines?” Her tone is innocent, curious. Even so, something about those expressive eyes causes me to pay attention.

“Well … three weeks ago,” I confess.

“Huh.” She pauses. “You know how you complain about your clients not paying you … ?”

There it is.

“I’m just saying,” she says, as she skips off to bed.

Yep. Just saying everything in no words at all.

(Full disclosure: the clients who haven’t paid HAVE received their work already. This poor unfortunate has been at the receiving end of the stress-paralysis induced by the malefactors. Just to be clear ;))

Unexpected Expectations

Expectations lie at the heart of human suffering.

We develop an image of the life we want, set things in motion to achieve it, and then expect the outcome for which we’ve worked and schemed and plotted. When it comes, we are briefly satisfied and slightly smug.

And almost immediately, we are hungry again.

We crave.

We expect more and do what we feel is necessary to acquire it.

And so it goes.

Worse, when our expectations are not met, things are not good. We sulk. We brood. We blame. We lash out. We become vindictive.

Things fall apart.

It is better to live without expectations. Rather, live in a state of expectancy. Live in hope and joyful anticipation, while cultivating a deep, authentic acceptance of whatever outcome our lot may be.

This perspective truly informs the heart of my philosophy. Or so I like to think.

Yet with surprising frequency I am tripped up by the expectations I didn’t know I had.

I thought things would be different – better. I thought my brilliant plan was logical and sound. I thought I’d feel better once I’d set it in motion. I thought I’d feel relief. I thought I would be able to move on.

I did not think I would be flat: deflated and empty. I did not know that I expected resistance to my plan. I certainly hadn’t anticipated the hope I’d had that I would be opposed, that conflict would arise and lead to a new and better plan: a strategy. A way forward.

A vision.

I had no idea.

Some days

Some days are bright rays of sunshine.

Some days are full of joy and sparkles.

Some days include movies – in the cinema – and bacon nachos and chocolate cupcakes and sleep overs with BFFs.

Some days, baby girls turn NINE YEARS OLD and wrap the universe around their little diva fingers and spread happiness with every batted eyelash.

Some days spill over into others like too much honey and infect whole weekends with their sweet, warm, indolent light.

Some days are less so.

Some days, brilliant minds are overwhelmed by too much of everything.

Too many ideas.

Too many options.

Too much to do.

Too much lack.

Those days are hard.

It seems like the brief melt down, substantial as ash (and as black) has swallowed up the mellifluous days of celebration that went before and left only cold emptiness in its wake.

Some days, we are so blessed. We have so much.

Some days, it is too much.

 

We all said no to drugs

We all said no to drugs

#BeAHero

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