Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘different

K is for Kindred

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My last post, in this series- J for Jealousy– was both easy and difficult to write.  Easy in the sense that I sat at a keyboard for twenty minutes and typed until I got it all out of my system, but hard in the way that I worried about how it might be interpreted…especially by my family and friends.  My kin.  The people in my life who aren’t dealing with autism, did they read that post and think I’m resentful of them?  I don’t know, nobody said anything to me.  We haven’t built that bridge yet.

That post was one of the most commented on, read, and shared posts I’ve written in a while.  I’ve noticed a trend: when I just share what I’m feeling without worrying about how I make others feel, especially when it is ugly and brutal, I feel supported and protected by you.  It is taking off the mask of normality, and being loved for the scarred and savage being that hides beneath.

When I became a special needs parent, I felt myself disengage from friends and family.  And I felt some of them distance themselves from me too.  I had no idea how to put my overwhelming, and often conflicting feelings in words.  How could I communicate, when I suddenly spoke a different language?  The more I kept quiet, the more isolated I felt.  Lost at sea, with no idea how to get back home.  While everyone else continued living as before, I was shipwrecked to a distant island.  Strangely, I never felt more alone than at the times I put my mask on, forced myself to be social, and visited the mainland.

It took a while before I realized that I wasn’t alone on my new shores.  There were other islanders, many of whom had been there for some time, and had developed survival skills.  There were even other islands, often with much more savage terrain than my own to deal with.  Most of all, there were people just like me.  It wasn’t so lonely any more, I had a new kindred.  In fact, it was impossible to be lonely, because more and more people are washed up on our shores every day, and they need us to show them they are not alone, will never be on their own.

Still, sometimes I get jealous of the mainlanders.  Sometimes I feel resentful that living on my island requires a lot of effort.  Sometimes I need to hear a, “me too” or a, “I know how you feel.”  The language of my people.

After some time on the island, I feel like a native.  Like I’ve always been here, like I belong here, amongst other kindred spirits.  My island has a rugged beauty that I love.  The citizens here holding each other so that were one of us to go adrift again, we could be pulled back home.

I found that once I accepted that I’m not a mainlander anymore, I could find a way to build bridges back there.  I can spend more time there now, as an expat, knowing that because I’ve changed so has the way I look at the place I once dwelled.  Many of my mainlander friends and family have found a way to reach out across the sea, or we meet on our bridge in the middle.  Though I’m foreign to them now, I’m still kin.  Some of them have told me about their own shipwrecks, different to mine, that left them floundering in their own abyss.  They let me know that I don’t need to wear that mask with them.  Most of the time I feel comfortable visiting the mainland,  but only because I know that when I don’t, I can come home to my kindred, and we can speak the language that unites us.

This post was written as part of my A-Z series.  You can read the rest by clicking >here<.

Written by Spectrummy Mummy

January 5, 2012 at 8:52 am

Culture Shock

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I was born with a neurotypical brain.  For the most part, I sense and perceive the world like the average person.  I can communicate with ease, and have no problem getting my needs met.  I find it easy to connect to other people, and interpret what they mean, even when they express themselves non-verbally.  I can read accounts written by those on the spectrum, and I can observe my daughter closely, but I will never know what it is like to be on the autism spectrum.

But I do know what it is like to feel different.

I came to live in the US when I got married, five years ago.  I assume that my transition to this country was infinitely smoother than most foreign-born wives.  I speak English fluently(!), I’d previously traveled in the U.S., I’d been working at the American Embassy, and count several Americans as close friends.  I didn’t anticipate any difficulties assimilating into my new life.

Like most people who move to a new country, I first enjoyed an extended honeymoon period.  Everything seemed better, faster, easier.  The cashier bags your groceries for you?  Brilliant!  Your request to have food prepared your way is graciously met.  You are enthusiastically encouraged to have a great day, without sarcasm.  Puzzling, but genuinely endearing too.

Then, after a few weeks, the novelty of the new place wears off, homesickness creeps in, and culture shock begins.  Why can’t I just put my own shopping in bags?  I feel like a fool just standing here doing nothing, it wastes time.  Can’t people just eat what is on the menu?  And I swear, if another person tells me to have a nice day, I will vomit on them.  Culture shock and morning sickness both hit me unexpectedly at the same time on that last one.

The worst thing though, is not knowing the rules.  The hidden curriculum that everybody around you just takes for granted.  I vividly remember the first time it happened to me.  I was at the post office, trying to send a package to my parents.  I’d written their address clearly, then put my return address on the back, as we do in England.  The man at the counter refused to send it, and said I needed to do it right, but with no explanation.  I asked him to clarify, and in an exasperated tone, he told me I needed to write the return address in the lefthand corner.  I couldn’t figure out why it made a difference moving the address to the side, but I did as requested, and sheepishly  returned to the counter.  This time the guy was unexpectedly furious.  It turns out that he meant the front of the package, not the back.  He scribbled all over the package, stuck labels on and alternately condescending and mocking my accent, he pointed to where I needed to write, and threw some forms at me.  I didn’t even make it out of the post office before tears of humiliation were streaming down my face.

Hours later, my new husband returned home from work to find me still upset.  Not only did I hate the U.S. Postal Service (which, incidentally, is very American of me) but I hated America, and needed to return immediately to the land of good and decent people that were my own.  I think Spectrummy Daddy was a little perplexed at his tough cookie wife turning to mushy dough.  Eventually I calmed down, got a lesson in the very basic art of sending packages from my considerate husband, and got my mettle back.  He was outraged that the institution was so intolerant of an outsider, and before long I felt that way too.  That man had no right to treat me like that, nor anybody else who isn’t aware of the hidden rules, no matter how basic they are.  When I marched back down to the post office another day, ready to go postal, that same worker wasn’t there.  To this day I feel edgy and full of indignation when I enter a post office, though I’ve always been treated well ever since.  Probably because I know where to write the damn address now.

There have been other incidents, where I just haven’t understood the protocol in certain situations, but nothing has ever upset me the way that time did.  These days I explain to people that I’m from another country, and need extra explanations sometimes.  Most people are obliging, and it is only on rare occasions that I feel like an alien.  The lessons have been extremely useful to me.  It helps me to remember that there are many things that Pudding needs extra clarification at times, especially on things I take for granted that everybody understands.  When we are trying our best to fit in, and are confused by what is happening, might be the time it is hardest to explain that you don’t understand.  And if I feel like this, how in the world does my girl feel, day in, day out?

Last week my petrol light came on when I was driving in Maryland.  My mind was far away dwelling on a conversation I’d just had with Pudding’s speech therapist.  I found a gas (petrol) station, and began pumping.  A man who worked there cam running up and asked me if I needed help.  I was puzzled, but assured him I could manage.  Then he started cleaning my windshield, which I wasn’t expecting either.  Next he asked if I needed my tyre pressure checked.  I told him I didn’t, but by this time I was very uncomfortable.  I never know when I should tip somebody, so always leave that to my husband.  I worried that he would be offended if I didn’t give him something, or insulted that I would try.  Then I panicked as I realized I had no cash on me, I’m like the Queen in that respect.  Luckily another driver came up to him, and I made a quick getaway.

That night I told Spectrummy Daddy about this, and how I think I’ll always have culture shock until I learn all the rules pertaining to life in America.  Learning those rules is particularly hard when we move so frequently, and parenting special needs children can be isolating.  He patiently listened, and nodded, then suggested I look around next time at the gas station that I don’t accidentally pull into the “Full Service” pump.

It isn’t always about being different.  Being in our own world, and not paying attention might be something else my girl and I have in common.

Written by Spectrummy Mummy

January 6, 2011 at 6:59 am

Why?

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Pudding doesn’t ask ‘why?’ yet.  Nor does she appropriately answer when asked why.  For instance an exchange could be:

Pudding: I want a paintbrush.

Me: Why do you want a paintbrush?

Pudding: Yes, give me a paintbrush.

Me: Because you want to….

Pudding: Yes.  May I have paintbrush, please?

She is nothing if not polite, but no real answers here.  So many frustrations could be eased if we could just nail this concept.  She knows that she wants to paint, she knows that she needs a paintbrush to do so.  It is all almost there, just one tiny piece left out.  Another reason, I guess, why the symbol for autism is a puzzle piece.

The “wh” questions are generally difficult for kids with autism spectrum disorders.  Pronouns too, which I understand, because they are slippery little suckers that change around all the time depending on who is speaking.  Does ‘I’ mean me or you?  She gets around it by always using names, which is a smart solution for that issue, but won’t help with “wh” questions.  She actually uses “who?”, “what?”, and “where?” all the time, but “when?” and “why?” are just proving more problematic.  I think “when?” is because she has a murky concept of time.  When she doesn’t want to do something, she’ll frequently tell us she wants to do it “later, on Monday”, even if it is a Monday, for example.  We have included “wh” questions on her IEP, but “why?” doesn’t get included as many typically developing children don’t use it at this stage either, she is not considered delayed.

When we reach this point of being able to reason with her, so she can tell us why she needs something so badly, and I can explain why she can’t have something, it will make life so much easier.  We’ll be able to figure each other out, the start of understanding somebody else’s perspective, the seeds that one day might sprout into a Theory of Mind (which is a whole other post, trust me.  Or just google it if you’re curious).

Of course, “why?” will come one day.  When it does I’ll have to be ready with the answers.  I can do “why can’t I have a cookie?” and even try my hand at “why is the sky blue?”.  Sooner or later though, we’ll get the really tough ones: “why am I different?”, “why do I have Asperger’s?”, “why won’t they play with me?”.  I’m not even close to being able to answer, or at least give a satisfactory answer.  In the case of the last one, I’m not even ready to hear that being asked, but I know one day it will.

The other day I found this site which provides free resources for teaching these tricky concepts, and I made a book of why.  With lots of repetition, we’ll get there.  In a year she has come such a long way, I have no doubt we can do this too.

I may not have all the answers worked out, but I do have a response for when she asks me a “why” I can’t answer: go ask daddy.  Sometimes parenting and spectrummy parenting are the exact same thing, don’t ask me why!

Written by Spectrummy Mummy

August 12, 2010 at 6:55 am