Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘signs

Gestures

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We were traveling in the car to a village called Clarens for the weekend.  The kids’ grandparents have been visiting, and Spectrummy Daddy thought his parents would like to go to this artists’ haven in a valley in the Free State surrounded by mountains.  I agreed, because I thought is sounded like heaven for all of us.  It was.

But we were late setting off.  I had a work event that day which included Spectrummy Daddy getting hit in the face with a whipped cream pie (I have a weird job).  The event had run late, and then with picking up the kids and getting stuff ready for a weekend away…later still.

We finally set off and hit all the rush hour traffic.  I was getting panicky, because much as Johannesburg has street lights and paved roads, that wasn’t going to be the case where we were headed, and this just isn’t a safe country to be driving at night.  Especially with all the men-folk in a different car with the GPS.

Actually, we did have Cubby with us in the beginning, though I’m not sure he counts as a man yet.  He wanted to be in the girls’ car at least.  As we crawled along in the traffic, I noticed Pudding was the wrong kind of quiet.  I looked back and her face confirmed what evidence supported a few seconds later: she was car sick.

Pudding has been car sick a few times before, but this was bad, and it was already getting dark.  We found a small shopping center off the motorway, cleaned up as best we could, changed clothing, and allowed Cubby to switch back to the boys’ car, which had become much more appealing by virtue of being vomit-free.

Traffic was even worse as we got back onto the motorway.  We inched along, and with cars cutting in and out, were positioned further away from Spectrummy Daddy and the rest of the gang in the boys’ car.  I was trying my hardest to keep their car in sight.  I knew how vulnerable we were without a GPS, especially as it got darker and harder to navigate.

I was more concerned with Pudding getting sick again, and kept checking my mirror to see that she was still okay.  I barely had time to react as a white car swept in from the side, almost hitting mine in his attempt to enter the motorway.

I was furious.  Already upset from the turn our trip was taking, this car had almost caused us an accident before we’d even left the city limits.  But feeling vulnerable already, I tried to keep the road rage in check, I brought the car to a halt so it could enter in front of me without hitting.  I didn’t need to lose what was left of my cool. 

But the man in the white car had turned back to me and was gesticulating, but I didn’t understand what he was saying.  He is saying words too, but I can’t hear them, and the movement of his lips means nothing to me.  I doubt he is speaking English.  

Then he started clapping at me…but slowly.  The hairs on the back of my neck were raised.  He is starting something!  We’re stuck in this traffic, and this guy is trying (and succeeding) to intimidate me!

Or is he?

I can’t understand his gestures AT ALL.  Is he being apologetic?  Does he feel bad that he almost crashed into us and is saying so, but there is a cultural divide?  Is it possible that the slow clap could not be sarcastic?  And a woman is in the passenger seat, maybe I’m getting this wrong.

So I don’t react at all.  I don’t smile.  Or nod.  I don’t shake my head.  I keep my eyes focused ahead as though I’m oblivious.  The traffic is bumper to bumper and not much safe space to manouever myself anywhere, but if he stops, if he is going to get out of the car to hurt us, I’ll pull off onto the hard shoulder and speed my way around.  I’m mentally prepared for highjacking.

But for now, I just need to remain calm and alert.  I don’t need to overreact.

Yet this man seems desperate for my reaction.  He won’t stop with his gesturing and clapping.  Then his wife gets involved, doing the same thing.  And it is dark, and I’m not sure where I’m going, and my kid is sick, and I can’t see my husband’s car, and I’m scared and WILL YOU PEOPLE JUST STOP TRYING TO PROVOKE ME???!!!

And then the wife works it out.  I don’t understand!  So she tries a different gesture, and I breathe a sigh of relief as she chooses a thumbs-up sign, one that even a white western woman like me would be able to understand.  

And I do.  With a large smile I return the symbol, and the man and his wife do the same and we are all smiles and thumbs and nobody gets hurt.  We move on.  Slowly.

We crawl on into the traffic and a night that gets darker and darker.  I have hours of driving to reflect on the incident with the white car and my reaction to it.  I wonder if this is how it can be for Pudding- when you struggle to understand body language and gestures, when communication is both basic and foreign at the same time, does she feel this afraid?  Does she misinterpret smiles as threats?  If an olive branch looks like a loaded gun- how do you ever trust this world enough to make relationships in it?  I’m profoundly aware, once again, that if I faced Pudding’s challenges, I would be curled up in a corner and refusing any interaction.  She takes my breath away with the simplest of actions.

When we finally get there, it is Pudding’s turn top be anxious.  She won’t let me go out of sight in this unfamiliar place.  I try to calm her with my words, and then abruptly realize that she won’t be able to interpret them if she is already feeling vulnerable.

So we climb into bed together, and I offer her my hand.  She recognises the gesture, and moments later falls asleep, her hand still holding mine.  One sweet gesture at least, we both share and understand.

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Written by Spectrummy Mummy

April 15, 2013 at 2:41 pm

Cubbyhole

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Now, some of you may have noticed that there is another little person in my life who doesn’t get as much of a mention as his big sister. There is a Cubby-sized hole in this blog. It isn’t right. He deserves his own write-up.

I’ve been putting off talking about him, because I don’t exactly know what to say. Every time I write a post on WordPress, there is a place for me to ‘tag’ my posts and this puts them in a category. I don’t know how I’d tag my boy, and I don’t know what category I’d put him in. I used to think Aspergers was a binary thing, you have it or you don’t, but Cubby is pint-sized proof that this isn’t the case.

When Pudding was diagnosed, Cubby was only five months old. At the time I was angry with myself (and the world) that I’d missed things in Pudding that were suddenly so obvious. I was determined not to miss anything second time around. But Cubby, like his big sister, hit all the developmental milestones. Just like her, he was born liking fans and lights, and tactile sensory-seeking. Just like her, he developed separation anxiety at a very early age, and seemed over-attached to me. And just like her, when I mentioned these things to the doctors, they told me this was normal.

Even Dr. P, Pudding’s excellent, perceptive, developmental pediatrician has yet to see the signs in him, but referred us to a sibling study to monitor his development.

We’ve had two sessions of the sibling study at the Kennedy Kreiger Institute. Each one is a grueling seven hour assessment, and both times we’ve had to split the session over two visits. The first evaluation found him to be developmentally on target, but with joint attention problems. Joint attention is where a caregiver shows something to the child, and he or she acknowledges this and responds accordingly. Joint attention deficits are considered to be the first indicator of autism. Cubby had some joint attention, but hadn’t mastered it. We went to work on this, and by the time his second evaluation had taken place, he had age appropriate joint attention.

We aren’t allowed to breathe a sigh of relief though, because this time around they found problems with his social communication, something that had been one of his strengths at the first visit. At age 16 months he knows and uses many words, he is developmentally ahead, even putting words together, but there is something about his use of words that is slightly off, or atypical, to use the word which frequently describes our children.  I’m working on his pragmatic skills, and teaching him some basic sign language, which enables both sides of the brain to be engaged in communication.  Perhaps we can get him back on track with this too.  Or maybe there will inevitably be another sign emerge, and then another.

Only time will tell.

For the moment, he makes great eye contact, shares his interests and imitates in play. Our local Early Intervention services will only provide therapy if he has a significant developmental delay, or has a formal diagnosis. Saying that I think he could be spectrummy just isn’t going to do it!

The A-word isn’t so scary the second time around, but that doesn’t stop me worrying about my baby boy. This time we know what challenges may be ahead, and how hard it is going to be to meet them, with our increasingly limited resources.

In January we’ve got our appointments for his assessments, perhaps by then things will be more evident. Until then, he just doesn’t fit into a cubbyhole, he can’t be categorized. He just is who he is, and we love him for it.