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

Posts tagged ‘asperger’s syndrome’

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 …

Diagnosis: here we come

Tomorrow is the day. We’re seeing a diagnostician to find out whether or not any of us has Asperger’s Syndrome. We’ll know, one way or another. We’ll know more than we do now, at any rate.

Here goes nothing!

Today is the tomorrow you worried about yesterday

Today is the tomorrow you worried about yesterday.

Taking a step towards diagnosis

aspie=awesomeI’m sure you’ve noticed a recent (subtle) focus autism spectrum conditions and how they affect individuals in the real world. The reason for the focus is that we’ve begun to suspect that most of us in our family are on the autism spectrum. Goldilocks and I, in particular, show marked Asperger’s Syndrome traits.

I’ve been researching the traits and challenges of autistic individuals for the last 4 – 5 years, and this research has given me a tool set that I can use in dealing with the girls in the most effective ways possible. It has also highlighted the coping mechanisms I’ve developed personally since childhood, in order to “blend” into what people think of as “normal”. The great thing about these coping mechanisms is that I can share them with Goldilocks and Red Riding Hood. When they face challenges that neurotypical individuals do not, I have a whole treasure chest of resources available to equip them to deal with just how confusing life can be.

An added (and unexpected) bonus is that I feel more free to be me. I no longer feel the need to conform to certain incomprehensible social mores. Or, if I do, I understand why I do, and am better equipped to do so successfully. This is turning out to be the case with my darling girls, as well. And I find that when we work through our home education programme, if I approach them with my “Aspie Goggles” on, my expectations are moderated and their responses and progress makes more sense.

In other words, this particular label suits our family. It helps us. There’s just one problem: officially, the label doesn’t apply to us. Not yet, anyway. Never one to take a doctor’s word for a final diagnosis, I decided to do comprehensive research and
beta testing” before I made it official. And I have. I am ready for the challenges and all that remains is a medical diagnosis. Even that is not a necessity, but it does make it easier to explain things to people. For instance, I’d love a band-aid to apply to social circumstances when the girls won’t engage, make eye contact, or give an acquaintance a hug or kiss. I’ve never forced them to do those things, and they’re not being rude when they refuse to do them. But it would be easier to have an “official” reason why when we’re dealing with others. A diagnosis also gives us access to support groups, places where we can safely ask our questions and share our experiences. Without an official label, we’re just interlopers feeding off the challenges of others.

This week we took a huge step forward. Based on the recommendation of friends of mine in the autistic community, we spent part of Friday morning with Action in Autism to begin to clarify my suspicions. The results are positive: the counsellor I spoke to agrees with my assessment, and has made an appointment for us to see a diagnostician early in April. We’re one step closer to having an official name for our super powers. Huzzah!

I stumbled across this video this morning, and the young lady presenting it eloquently describes just what it is that makes Asperger’s syndrome, and being an aspie, so awesome. Her words certainly mirror our experiences, so I hope you’ll watch it and find out a little more about what makes us tick.

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