Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for August 2011

Community

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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.

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Written by Spectrummy Mummy

August 14, 2011 at 8:43 am

Safe Heaven

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In our home we have a safe haven. A secure area we can retreat to in the event of danger. Before we arrived, somebody had tried to sort through our large collection of keys to label them, and so we found the keys for our “safe heaven.”

It made me smile, because in so many ways, where we live is like paradise. The weather is glorious, the people friendly, the country amazingly beautiful, but with all the conveniences we’re used to. I can’t believe how fortunate we are to call this place home for the next three years. It surely is heaven.

Apart from one thing: the crime. It is hard to match up this glorious land of sunshine and smiles with the frightening statistics. Car-jackings, personal invasions (armed robbery of private residences), smash and grabs, muggings are all alarmingly commonplace here. It is the rape capital of the world. Living in the Northern suburbs, our affluence is a stark contrast to the poverty of the townships. There are parts of this city I will never visit. Even here I will always be on alert.

I’ve never lived anywhere like this before, and I can’t believe how much I took for granted that feeling of peace of mind.

When friends asked how I liked South Africa when we first arrived, I responded that it was like England, but with better weather and worse crime.

Then England rioted.

Seemingly out of nowhere, first London, then other parts of England came under siege. I struggled to believe it, this is England. This is my safe haven, where I would always return with the children if things got too crazy elsewhere. Suddenly it seems safer here than over there.  Severe cuts to the police force left them instantly overwhelmed.

Of course, this looting and violence didn’t suddenly spring up. It seems that the motivations for the riots are different in different parts of the country. Just as there are multiple causes: a cocktail of political, racial, cultural, and economic reasons, so will the ultimate solution be difficult and complex. I don’t have any answers here.

Yet the reasons people are putting forward to explain this senseless shift to chaos are intriguing. A generation of children and young adults who are alienated from the rest of society, who are so disengaged that they feel no empathy for the pain and destruction they are causing to others. Young adults who feel their futures are so hopeless that they opt for instant gratification regardless of the consequences. Entire sections of community at odds with one another, and a pervasive mistrust of authority.

Alienated, disengaged, lacking empathy, hopeless- these are the words I’ve read recently to describe the people of my homeland. The neurotypicals of my homeland at that. It is interesting to me that the same words which are often used (incorrectly) to describe adults and children with autism are being applied to entire sections of community. I would love to understand what is happening in England, but the causes are mysterious and complicated.

I’m ashamed at the violence directed against innocents.  A teenager even tried to mug my friend as she walked with her baby in her neighbourhood in broad daylight.  I’m proud of the way others rallied together to clean up the mess.

The Prime Minister described society as “sick”, but he failed to offer a cure. We are invited to see the rioters as different to us.  And while I can’t imagine tearing up my homeland, neither can I imagine feeling alienated, hopeless and disengaged.

As the police regained control and the courts are dealing with the fall-out, we are learning that those involved in the riots appear to come from all sections of society: a number of students, a teaching assistant and an 11 year-old girl are among those facing charges. For a while, the rules were gone, chaos reigned, and the thrill of the mob was too appealing for many. England was in meltdown. If these people have taken part in destroying their communities, we have to ask ourselves why, even if the answers are mysterious and complicated. Even if a solution is hard to find.

It pains me to think of my home country being torn apart, to see places I’ve lived and visited being destroyed. Just as it pains me to think of the crime in this beautiful country where I now live. Just a few miles from the townships, I can close my gates, lock my doors, and enjoy a relatively safe heaven. But I can’t help but feel sad that I have experienced a different England and South Africa to many.

And that my haven will only feel safe under lock and key, away from the alienated, disengaged, and hopeless.  Peace of mind is increasingly a slice of heaven that few of us can experience, no matter where we live.

Written by Spectrummy Mummy

August 12, 2011 at 1:29 am

Wordless Wednesday 10 Aug 11

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Security

I was dreading living surrounded by all this security. Now I can’t tell you how grateful I am to have all these protective measures.

Peace of mind is beautiful.

Happy Wordless Wednesday everyone, and be safe wherever you are.

Written by Spectrummy Mummy

August 10, 2011 at 3:21 am

The Journey

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Before we left for South Africa, I referred to our journey as The Flight, and much as it deserved capital letters, it disguised the fact that there were in fact two flights. The first was a tiny domestic flight under 2 hours, the second being a mammoth 15 hours. So in my preparations, I concentrated mostly on the big one. I assumed the first flight would be easy. I was wrong.

We’d had a couple of hiccups before boarding. The van that we booked to collect us was late, and we were all waiting in the DC summer heat for over half an hour. To say that the kids became irritable doesn’t really do it justice.

Going through security was tough for Pudding this time. She refused to let Kelly doll be subjected to the x-ray machines, then became anxious of the (male) security guard. Fortunately we’d chosen the special screening area and there was hardly any other passengers around to add to her distress.

We pre-boarded, and I retrieved one of the Flying Fairy’s wrapped up gifts: a pad of paper and markers. She was delighted, and began to draw. She drew the best rainbow yet, along with a few other sketches. I was pleasantly surprised at how well the gift occupied her.

Once we were airborne, the attendant came around offering a drink, and we pulled down the tray for the first time. When she finished her water, she moved her pad to the tray and continued drawing. She drew a train “for Cubby”, and then a princess. The princess’ gown needed dots.

She raised her hand and with too much force brought it to the paper. I quickly told her it was too hard, and held her hand to help her gauge the amount of force required. But this wasn’t a teaching moment for our heroine. She was incapable of changing her motor action, and again and again she raised her arm for more dots.

The woman in front turned around and told Pudding to stop kicking her chair. Pudding’s legs had not moved until that point, but when she feels threatened she reacts violently. Pudding was scared by the tone of the lady’s voice. I knew the legs were going to kick from that point on.

The woman continued staring at Pudding, waiting for her response. She would have waited a long time. I apologized, and explained that my daughter has special needs and may not have understood. This was not acceptable. So Spectrummy Daddy and I avowed that we would do our best to prevent Pudding from disturbing her peace.

Of course, now that Pudding was ruffled, preventing her from disturbing the peace was easier said than done. Though I managed to prevent her from touching the seat in front by holding her hands and legs, she became very vocal (and loud) in her discontent.

The woman and her husband continued to turn around, give us “the look” and sigh, but I resolved not to make the situation any worse. Still, every stare was a challenge to Pudding. The more they turned around, the worse her behavior became. She was desperate to get off the flight. So was I.

Loud as Pudding was, we’ve seen much worse in other children. Evidently the couple in front had not. I’ve had my seat kicked for the entire duration of a flight, and I don’t think that drawing dots on paper really compares. They complained to each other for the remainder of the flight, making sure it was loud enough for us to hear. I became particularly rattled when the woman wondered aloud why “they are allowed to fly.”

How I wanted to scream at her! Who shouldn’t fly? People with autism? Any special needs? Children in general? Who are “they”? Just anybody who is not the same as me?

But as I’ve written before: when Pudding is worked up, I don’t have the luxury of rage. My only job is to comfort her, because the last thing we all needed on that flight was a meltdown, and we were flying perilously close.

Pudding eventually calmed, and returned to drawing. Her storm had passed, but mine still raged on. The lady became air sick, and I felt my first stirrings of compassion. It is bad enough feeling sick without being disturbed. I was glad Pudding was preoccupied at that time, she tends to repeat that somebody is sick over and over. There is nothing worse, let me tell you, if in fact you are sick at the same time she is pointing it out, ad nauseum.

Soon it was time for the final descent. The husband called for a flight attendant, wanting to know where he would be able to collect his wife’s wheelchair. The attendant explained that they could wait until everybody had disembarked and it would be brought to the cabin door. Instead the wife opted to get off at the same time as everybody else and walk on her crutches.

Her husband moved on ahead quickly (presumably to collect the wheelchair) as the wife moved slowly and painfully through the tunnel to the terminal. Spectrummy Daddy had waited behind to collect our stroller (push chair) and I followed directly behind the lady with Cubby and Pudding.

With her two crutches, there was no room for other passengers to pass. Now I felt for her. Others were trying to get by, in a rush to leave the airport or make their onward connection. Once she had started there was no way to change her mind. She had to keep going until she reached the terminal, no doubt feeling the humiliation of a body that can’t do as she wishes.

Behind me I could hear others becoming impatient. Maybe some were thinking that she shouldn’t have been allowed to fly, much as she had said a little while earlier about Pudding. This woman’s disability had been hidden while she was seated on the plane, no wheelchair or crutches in sight. Pudding’s disability is hidden all the time. Sometimes her autism can inconvenience others, but never as much as it causes difficulties for my girl. This lady and Pudding have more in common than she would ever have realized.

I was still angry, and scared of the impending 15(+) hour flight. I needed a drink to calm my tempest. We made our way to the next terminal, and found a coffee shop. After a short while, the couple arrived and sat a few tables away from us. This lady who had seemed so formidable an hour earlier now looked elderly, frail, and beaten by her efforts. Pudding, no longer hyperactive, looked tired and defeated too.

We’re on the same journey, and yet finding it so hard to really see those traveling with us.

Our table was right next to a piano, and a gentleman arrived to perform. The kids were pleasantly distracted by his music, and before long, I was too. I noticed something around his neck, and realized he was wearing an autism awareness lanyard, and I almost cried. In recognition, relief, solidarity….I don’t know what. When it was time to go to our gate, I gave him the remaining dollars I had left in my purse and thanked him, not just for the music.

And you know, the second flight was better than I’d anticipated. A passenger even apologized to me for disturbing Pudding when she had fallen asleep. We made it.

This can be a Hell of a journey, but it eases considerably knowing that we don’t travel it alone.

Written by Spectrummy Mummy

August 8, 2011 at 2:13 pm

Wordless Wednesday 03 Aug 11

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Happy Wordless Wednesday!

This photo reminds me of the song “She’s a Rainbow” by The Rolling Stones.  She comes in colours everywhere.  Enjoy your Wednesday, and leave me your link in the comments section.  By the time you read this we should have landed, but will probably be a few days without internet connection.

Written by Spectrummy Mummy

August 3, 2011 at 12:01 am

Making Connections

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As you read this, I will be finishing packing, getting the kids ready, heading to the airport, taking our first flight, making our connection in the busiest airport in the world(!), or on our second 16-hour flight.  Or I’ll be a stranger in a strange land, figuring out what to do next.  At least for me, that is familiar territory.

When Pudding was first diagnosed, I struggled to learn a foreign language littered with phrases like “echolalia” and “proprioception.”  Eventually I became fluent in this new language, even making up my own translations for some of those tricky phrases.  This language would be how I communicated with Pudding’s educators, therapists, and doctors; but to communicate with my girl, I had to learn to speak her language, just as she struggles to learn mine.

During the last two years, I made connections with those who could help me navigate this strange land.  In particular a teacher and doctor whose care and attention extended beyond Pudding to our entire family.  They acted as my guides so I didn’t get too lost.  Eventually I found community resources, and made sense of insurance regulations and somehow managed to find a path to follow.  It wasn’t always the easiest journey, but I could stumble my way along.

I would be lying if I said I’m not intimidated by starting all over again.  Making new connections, and finding trusted professionals who have my family’s best interests at heart.

At least once I began blogging, I found that there were so many of us, we could find our way together.  By reaching out to one another, we make new connections, form a community that doesn’t have geographical boundaries.  I have friends walking the same path, holding my arm if I should happen to stumble.  I’m grateful beyond measure for the friendship and support I’ve found through this blog.

Connections matter.  A few weeks ago a friend from university announced he was going to be the manager of a new independent cinema in England.  I immediately though about how great it would be if they could do the sensory showings that we enjoy here in the US, and suggested to him that they do just that.  He said he’d get back to me, and earlier this week he wrote back saying that when they open later this year, the cinema will be offering sensory showings every three weeks.

If that can be done in the UK, why not South Africa?  Why not everywhere?  We just need to keep making those connections.

I want to thank you for reading, commenting and sharing this blog over the last year.  It has been an incredible journey, that in many ways is only just beginning.  Time for me to go and make my connections.  Time for more adventures abroad!

If you would be so kind, I would love it if you could visit here and vote for Spectrummy Mummy as one of the top autism blogs.  Many thanks!

Written by Spectrummy Mummy

August 1, 2011 at 6:03 am