Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘community

Here and There

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Tuesday was a really hard day.  We haven’t had a break in a while, and I was itching to escape.  I booked a night away at the weekend, but it has been a relentless run of a couple of months without stopping, and one night away seems like too little, too late.

After another draining day at work, I collected the kids from school, and got ready to head back out- Tuesday evening was the back-to-school open evening for parents at Pudding’s school.  No time for dinner.

To say I didn’t feel like going out there would be understatement.  The school is a 45 minute drive at the best of times, and after dark in Johannesburg?  Not so much the best of times.  I try my best to avoid ever driving alone at night.  But Spectrummy Daddy was staying with the kids, and I felt like I couldn’t not go.

Traffic was even worse than usual.  I left at 5:10 to be there in plenty of time for a 6:30 start, but I soon realized it wasn’t going to be enough.  All in all, seven (7!) traffic lights were out on the busy route, and not one of them policed.  I turned on the radio only to hear that the alternative route by motorway was in the same condition.  As day turned to night, and gridlocked in traffic, I felt a growing sense of unease.  My frustrations darkened my mood further, and I let myself go…there.

There is where I imagine an easier life.  Where we live close to family and friends, and I can count on them to give us a break when we need one.  There is my kids going to a local school and growing up with the same community.  There is building a life for us, and living it- not having to do the same thing over, and over, in far away lands.  There is easy.  Here is hard.

My legs were cramping from riding the clutch for so long that I almost missed driving an automatic.  I did my best to avert my curious gaze from the casual prostitution happening at a particular traffic light where I idled for too long.  I wanted to call my husband and tell him I was done with here, with this whole Foreign Service life, but I know better than to use a Smartphone here while driving alone in the dark.

Finally, finally, at just after 7 pm, I arrived at the school.

The Director saw me first, and gave me a friendly greeting on first name terms.  Next I saw the mother of a child who was in Pudding’s class last year.  We hugged, and I started to feel better.  Next I got to check out her new classroom, where she’d left me a note asking to check out her “portit.”

I left her a note in return, then got to check out her new classroom, taking note of the many accommodations. As Ms. A, her new teacher had previously let me know- these supports are actually beneficial for all kids, and having them available to all ensured that Pudding isn’t singled out.  I felt all my tensions slip away.  My girl, she is right where she needs to be.

Next I got to meet Pudding’s art, music, and PE teachers.  I had to smile as the new teachers shifted from polite interest to excitement as they found out I was Pudding’s mother.  That kid really is a rock star, and I loved hearing all the anecdotes: such as Pudding turning on the music in class- the music teacher convinced it only happens when she talks for too long!  Yes, that absolutely sounds like her.

Though it was getting late after a long day, I couldn’t resist popping in to see Pudding’s kindergarten teacher, who was in the middle of reassuring a new parent that her child (who had some differences of their own, but not like Pudding’s) was in the right place.

I couldn’t agree more.

The drive home was just about the complete opposite- I practically flew.  What was I even thinking on the ride out there?  Of course this isn’t easy, but she is where she belongs, and when we move again, we’ll start up a whole new village.

Here or there, it doesn’t matter.  We are always right where we need to be.

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Written by Spectrummy Mummy

August 30, 2013 at 11:05 am

Beyond Blue

with 2 comments

I’ve been thinking a lot about this month and what it means.  Thinking, but not really finding the words to write about it.  I’ve read many articles and blogs about how we don’t need autism awareness now, only acceptance.  I’ve read about people lighting it up blue, refusing to light it up blue.

The first World Autism Awareness Day took place when Pudding was just a few months old.  It came and went without me giving it any thought.  I was an outsider.

Sometimes I still feel like an outsider.  Perhaps it is all these years of living as an expat- I don’t seem to fit in even where I’m supposed to belong.  Even when I’m fully in agreement with someone’s perspective, I seem to see another side.  I’m divided.  Conflicted.

I have my reservations about the Light It Up Blue campaign.  I’m concerned that Autism Speaks is speaking without listening to autistic adults.  

And yes, what good is awareness without acceptance?

But what if there is a fundamental lack of awareness?  What if, instead of the right to a free and appropriate education, schools (even private, special needs schools) refused admission because of an autism diagnosis?  What if there are barriers here that individuals and families have to face that I will never even understand, coming from a whole different world.

So when we lit up blue, it was in a spirit of solidarity.  Less about the charity that initiated this campaign, and more about how autism has connected me to people in this beautiful country who  I would never otherwise have known.  Like my friend who started a charity from her living room, because she knew that there wasn’t going to be one if she didn’t.  Or my friend Di– unable to find a school to meet her son’s needs- opened her own!

Or people whose lives have been touched and forever changed by knowing our daughter.  Her beloved teacher wrote to us this week:

I just can’t tell you how much of a privilege it is to be Pudding’s teacher (or Pudding being my teacher?)- she is a shining light.  Today as we got ready for Show and Share, she somehow got herself ready to talk to the group before we had even had a chance to choose who went first.  She had her picture of a spider (in black  – no sign of pink or Hello Kitty??!!!?) that she had drawn as she got to school this morning and put on the show and share table before assembly.  She is better at planning her day and being ready than anyone I know.  She then lapped up the limelight while she showed her classmates her picture and waited for the applause. How things have changed!

She continues to surprise me and teach me, but most of all she makes me smile.

Happy World Autism Awareness day!  Pudding has made me aware of so many things and I am so grateful!

 

And I think about one of my local colleagues who came to me today realizing that as I talked about my daughter, I could have been describing his.  Through awareness coming to understanding and acceptance.

And beyond South Africa.  I think of other people I’ve met through this blog, all over the world who are my heroes, my friends, my community. 

My girl wouldn’t shine blue.  She is all pink.  But she shines.  

For me it is beyond a campaign, beyond a charity, beyond one country.  I think of a whole planet with lights scattered all over.  Some of them may be clustered together, some may be the only light around.  We shine together.  

Maybe I don’t really fit in, but I still know I belong.  That might be what we all really need from this month.

 

 

Written by Spectrummy Mummy

April 4, 2013 at 8:58 pm

Comments

with 7 comments

A recent post I wrote got a lot of attention.  I’d dashed it out quickly, before starting work, as part of another blogger’s link-up.  It was a sensitive subject: calling out Ann Coulter’s use of the R-word, and no sooner had I published it than I was bracing myself for the backlash. 

I should have taken longer than a couple of minutes to write that one.  I should have made it even more clear that I don’t have a political agenda, but a personal one to do my best to ensure this is as accepting a world as I can make it for my children. 

And I know how ridiculous that sounds, and that I will never be enough change how people think and speak and treat each other, but I also know that I have to try.  I know that I’m not on my own.  And I know that I’d do anything to prevent my children being called that term.

The number of views on that post kept creeping up, until it far exceeded anything else I wrote.  While I was pleased that so many people were interested in learning about why the R-word is offensive to the special needs community, I thought how strange it is that the most read post about my children is about something that shouldn’t apply to them at all.

I got comments that day, but they were all of a consensus with me.  I couldn’t help but wonder about the ways my piece had been shared, and what other people were thinking and saying about it, but nothing negative came my way.

Another autism site occasionally takes my posts and publishes them for a wider audience.  A few days after publishing my post, they shared it too.  Here, the comments became offensive:  I was a “cry baby”, I should “grow up”, “it is just a word”.  There were supportive comments too, but what really stuck in my head was the person who insisted that I was “using a blog dedicated to handicapped children to score points against a Conservative woman (I) don’t like.”

I made a conscious decision not to respond to any of the comments there, and asked the site to no longer use my posts.  I understand that some welcome debate, and encourage opposing views with the aim of persuading them to their own way of thinking.  In this case, no heed was being paid to what I’d written.  Assumptions were made about me, and what I had to gain from writing, that had nothing to do with the actual words I’d written.  There would be no changing minds here.

But that didn’t mean that I forgot about the accusations made against me.  I was angry and hurt.  I’m offended by a person using the R-word be they a friend or celebrity, politically left or right.  Am I using my children?  I’ve always written this blog with the intention of sharing it with them. 

This is our journey.  We laugh, we love, we grow, we make mistakes, we reflect, and we learn.  If what I write helps other people on their journey, I’m happy for that- but there is no ulterior motive here.  This is simply the way we encounter the world, and how the world encounters us.

And yet those words stayed with me.  They held me hostage.  They made me question what I’d done, and if I should any longer write publicly.  It would be so easy to stop, I have so little time anyway. 

Even when I forced myself to write, just so that I wasn’t allowing someone else to make that decision for me, it didn’t stop the little voice in my head from repeating those things over and over.  Then I got a comment from a new reader:

I’ve begun following your blog and I find it so moving, amusing, and delightful that I decided you needed to know! It seemed fitting to share it under one of my favorite posts. This makes me think of “The Moose” by Elizabeth Bishop, and the play on perspective made my eyes tear up a bit! Though I have no children of my own, your blog makes me feel like I can handle whatever comes my way with grace, compassion, and humor. Thanks

That comment made me question if I’d handled this situation in a way that was true of what she’d said.  Not really.  I’d allowed myself to feel all the weight of negativity without sensing any of the light.  Ignoring all the support and community to focus on a person’s opinion that is far removed from us.  Who not only doesn’t understand, but won’t try to. 

And if I stopped writing for any reason other than it was the right time for me and my family, I wouldn’t be living life on my terms.  I thought about what I would want my children to do if they were attacked in a similar way, and found my own example severely lacking. 

When I think about how I want them to handle whatever comes their way, I want it to be with grace, compassion, and humour.  Do I want this reader to be right about me, or a harsh critic?

And what if, what if one day somebody were to call Pudding the R-word?  Would I want her to feel held up by the way we see her, or weighed down by one offensive word? 

Thank you to the lady who wrote that comment just when I needed it.  Thank you to each and every one of you who take the time to read, and particularly those who comment.  I don’t always have time to respond to them these days, but I am going to make sure that I pay attention to what you say.  That I really feel your words, and give those the weight that they deserve.  

Maybe then I’ll handle things that come my way with the grace, compassion, and humour that we’re all capable of.

Written by Spectrummy Mummy

November 5, 2012 at 10:38 am

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

Home

with 12 comments

Pudding has settled in incredibly well to our new surroundings.  We live in a very small community with just 4 other houses, and now everybody knows her and Cubby.  Of course, it doesn’t take long to get to know someone when they ring your doorbell, and march into your home uninvited when you answer the door.  If ever I forget that Pudding has no concept of boundaries, I’ll just wait for one of the neighbours to let me know.  It won’t take long.

When the Consul General and his family first arrived here, their residence wasn’t ready, and they had the pleasure of being our neighbours for a few weeks, which meant an intimate acquaintance with our daughter.  She liked to call on them, do a tour of their house, check on the cats, then leave.  Living with Pudding, I forget how strange her behaviour must seem.  This tall preschooler who invites herself into your home, but refuses to speak or look at you.  Fortunately, they took it in their stride, and even told me how charming they found her, which is very diplomatic of them.

Another colleague of my husband and his family live directly across from us.  They’ve probably experienced the most visits.  Pudding has taken it upon herself to invest in the welfare of their pet rabbits.  They even have the grace to extend an invitation to let her feed her furry friends, which is nice, but unnecessary.  Pudding would gatecrash anyway.

Another house has a family who are based at the Embassy in Pretoria, they too have experienced a Pudding tour.  I thought about apologizing to them for the impromptu visits, but one day I was typing away at a blog post and I turned around to find their 3 year-old standing behind me.  I’d say we’re pretty even.

And so the remaining house.  Until this week it had been unoccupied, but the couple who live there returned home.  I met with the husband and we had a brief chat about our little community, and England as we’re both expats.  I awkwardly mentioned about Pudding’s habit, and again, he was kind enough to say it wasn’t a problem.  We’ll see if he continues to say that for the next three years.

Add to this cast of characters the housekeepers, nannies and guards who appear to be enchanted by the troublesome twosome.  They accept her endless quirks without question.  She is free to be herself, which is usually an atypically social and giddy girl.  After a school day of targeted therapies, Pudding is ready to let loose, and I let her.

If you were to ask me, I’d say that exploring her environment is a necessary step for Pudding to feel comfortable in her new environment.  A comfortable Pudding is a child who is ready to learn, develop, and show us what she is made of.  I wonder how this move might have gone had we lived in a less welcoming (and forgiving) community.

So my girl is currently free range, and I don’t think she has ever been happier.  Because we happen to live in this incredibly supportive community, I’ve allowed her all the freedom she desires.  One day there will be boundaries to learn.  One day there will be appropriate social conduct lessons.  But for now, there is freedom, and a strong feeling of home- even if not all those homes are our own.

Written by Spectrummy Mummy

October 27, 2011 at 12:43 pm

Community

with 11 comments

Community. It is a word I’ve used a lot in the last two years. I’ve written about the autism community. In spite of the divides and differences, it is a place I’ve considered my virtual home for the last year. But apart from an all too brief day in May to meet my friend Alysia, my community has been distinctly virtual. I’ve felt the loneliness of being the only family like ours, and loneliness might just be the opposite of community.

Loneliness is what compelled me to write my first blog post. It wasn’t that I didn’t have friends, it was that I struggled to communicate my experiences. Spectrummy apples don’t fall far from spectrummy trees. Many of my friends did read, and began to understand our version of autism. They became part of my community too, just as the other parents of children on the spectrum, and adults with autism who read and commented, and shared their stories were my community.

I didn’t feel lonely any more.

And then we moved. Not just a little move, but to another continent, far away from my community. I wasn’t just cut off from my friends and family, everyone I’d ever known, but no Internet connection meant I was absent from my virtual family too.

But not without community.

In the State Department, each officer and their family are assigned a sponsor to meet them at the airport, buy some essential groceries, and answer questions about life in the new post. Our sponsor also had a foreign-born spouse, and two children aged 2 and 4. They were kind enough to take us along with them to some of their favourite places. They also threw a party to welcome us to the rest of the consulate community on our first weekend.

We were welcomed. Several times I felt compelled to explain or apologize for Pudding’s behavior- after all, strangers and the intense social experience of a party was overwhelming, particularly for a child with Asperger’s who had just moved to a new country. But every time, I was told there was no need. We were all accepted there. And just like any community, the consulate is full of different kinds of people, our own particular brand of diversity just as acceptable as any other kind.

A few days after the party we went out to an elaborately family-friendly garden centre with some of the other consulate families. After spending the morning at a huge playground, we went for lunch at a restaurant where Pudding made her own pizza. The sensory experience was just what my little seeker was craving, and she was in heaven pressing out the dough, rolling it out, smearing the sauce, and sprinkling on the other ingredients.

Then the chef took it away to cook, and the trouble began. Pudding had been enjoying herself, and saw no reason why her creation was taken away. We carried her back to our table kicking and screaming. I held her thrashing body as Spectrummy Daddy helped ease her into the comfort of her weighted vest.

I began to explain to her that she would have the pizza to eat soon, but as always during a meltdown, I was unclear as to how much she heard, or understood. As I gestured over to the brick oven where we could see her pizza, I noticed a table of three women with a baby and toddler. Staring. Talking to each other and staring at us. We were the car crash from which they couldn’t avert their eyes.

I hate those eyes and the challenge they represent for Pudding, and for my parenting skills. I don’t discipline during a meltdown, and I know that is what is expected by those who don’t understand. Sometimes I’m understanding of their lack of understanding. After all, I was once blissfully ignorant too. But sometimes I don’t have that composure, and in the company of my new community, we were in the midst of our greatest challenge.

As Spectrummy Daddy explained to our new friends about a meltdown, and why Pudding needed to wear her weighted vest, I glared back at the table of witnesses. Though they quickly averted their eyes, they whispered to one another, and looked back. In anger I mentioned my frustration about the stares to the rest of the table.

One of the other mothers gently touched me on the arm, and told me to turn around to face the rest of the group. “You’re with us now, we don’t care what they think.”

Community. Instant and accepting community. I smiled, and did exactly as she suggested. Pudding calmed down a few minutes later, just in time to devour her creation. By the time I turned around again, the table was empty, no more eyes upon us. We went on to enjoy the kiddie rides. Though there were some emotional moments, I no longer felt tense about anybody’s judgement.

I’ve mused since then about how different it would be for families like us if we had a sponsor from the beginning. One who met us at diagnosis when we were so overwhelmed and disoriented that we we felt jet-lagged. Someone to pick up the therapeutic supports we needed and helped us to shop for services. Then held our hands for those first few days, weeks, and months as we navigated a whole new landscape. How different things would be.

We’re in this together. We may be diverse and divided as a community, but you need never feel lonely again. You’re with us now.

Written by Spectrummy Mummy

August 14, 2011 at 8:43 am

Sensory Showing

with 11 comments

Last week we were visiting family in Florida, but the timing coincided with something I planned on doing one last time before leaving the country: attending a sensory showing.  Here in the US*, AMC theatres provide a monthly sensory showing of a film for those on the spectrum and their friends and families.  It. Is. Awesome.  The normal rules of the cinematic experience are suspended.  You are free to move around and talk, bring your own allergy-free snacks, and the volume is lowered and a light kept on.  Instead of the usual commercials and trailers, the film begins right away.  They even put a special price on tickets, so a family living here outside expensive Washington D.C. pays the same amount as those living in more affordable parts of the US.

The downside to the sensory showing being only once a month, and catering to the entire population (not just children) meant that the two films Pudding would most have enjoyed were not sensory showings.  We went to see The Princess and The Frog anyway at a regular showing.  We deliberately waited until it has been out for a couple of weeks, and went to a Sunday morning screening where there would be other kids.  Pudding enjoyed much of it, but the sounds was a little loud, and some scenes were scary.  She needed to make a couple of trips to the bathroom.

Towards the end she was a little overwhelmed, and I gave her my iPod (volume off) to distract her.  A woman sitting behind us quickly told us it was distracting her, and asked us to switch it off.  I wanted to tell the woman how well she was doing, that she just didn’t know what distracting was, but she’d soon find out.  But the normal rules applied there, so I did as she asked, fully expecting a meltdown.  But Pudding coped, she just asked to leave again.  Her Daddy took her for another walk and they returned for the final scene.  I was soured by the experience, and when Tangled came out and we found it was not the sensory showing that month, we decided to wait until it came out on DVD.

Finally Toy Story 3 hit the cinema and it was a sensory showing, and we had no other plans that day.  I don’t recall a time when we have felt so welcomed as a family.  There was a real sense of community, and I knew no matter what my kids did, we would be accepted and respected.  There are few times we’ve been out in public when I could say that.  Pudding really only identifies with female characters (read princesses and fairies) and Toy Story 3 became a bit overwhelming for her, so that time we took advantage of being able to wander around safe in the knowledge that we weren’t bothering anyone.  A child behind us began the film by reciting every line after it was spoken.  His parents soon urged him to stop, but it didn’t annoy me in the least; rather it cemented the fact that we were with those who understood.  Pudding had just started in her preschool autism class, and a classmate found her and cupped her face and spelled put her name.  I didn’t know she knew him (though I guessed), but marveled at how relaxed she seemed with somebody touching her.  I wonder if she was so calm because we were, because the normal rules that are so constraining for her just didn’t apply that day.

Our family already had plans the day of the sensory showing of Cars 2, but I persuaded them to join us for it.  Cars 2 definitely isn’t a Pudding kind of film, and it also went over Cubby’s head, but just being free to move around, play in the iPad, and speak is a freedom that they enjoyed, and so did we.  All the cousins got to enjoy the movie together.  Though we were away from home, it was still touching to see moviegoers hugging each other at the end.  That sense of community and belonging is a real gift.

Thank you to The Autism Society and AMC for making these accommodations and giving my children such enjoyment, and making us all feel like we belong.

*UK readers click here for information about an autism-friendly screening.

Written by Spectrummy Mummy

July 8, 2011 at 7:35 am