Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘moving

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!

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Written by Spectrummy Mummy

August 1, 2011 at 6:03 am

Newton’s Law

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“To every action there is always an equal and opposite reaction:

or the forces of two bodies on each other are always equal and are directed in opposite directions.”

Newton’s Third Law of Motion.

I would say that, as a rule, my life is governed by Murphy’s Law.  As we are in the process of moving, however, I can’t help but think of Newton’s Law- possibly the only thing from studying physics almost twenty years ago that my tiny little brain still remembers.  For me to write a post that even refers to physics is ridiculous- together with the other sciences and mathematics, these are definite areas of weakness for me.

We are currently staying in temporary accommodation, and there is no kettle here (the horror!).  To make tea, I had to boil water in a saucepan, but then the lid was stuck.  Spectrummy Daddy couldn’t remove it either.  He is similarly challenged in these areas, and between the two of us we couldn’t decide on the best course of action.  We are not great systemizers, for parents of a child on the autism spectrum.

He thought we needed to boil it again to heat and expand the metal; I felt it needed to be cooled to shrink it.  And my interpretation of Newton’s Law means my way makes sense.  And Spectrummy Daddy’s interpretation of his wife is to go along with whatever I think until I prove myself wrong.  It is cooling in the fridge as I write.

But really, I’m not talking about a pan lid.  I’m talking about Pudding.  You see, I feel like I know my girl well.  I have a conceited notion that I can predict how she will react to a given action.  Having lived in the same house for two years, surrounded by her favourite things, I thought she would have  a very emotional reaction to leaving her home.

Moreover, I felt that she would also react negatively to our temporary quarters.  For those of you keeping track, this is where we stayed two years ago, and I wrote about it here and there.

Even before I stepped into the room, the smell of the cleaning products was unmistakably familiar.  Had I been blindfolded, I’d have known where I was.  And the same layout, and similar (updated) furnishings intensified the memories. I know she remembers the place, so I’ve been on high alert for any sign of anxiety, but none came.  She danced and pranced around the rooms.  She was giddy and giggly.

After staying the night, we needed to return to our house on Sunday to finish sorting things ready for the packers to come.  And there it was: an equal and opposite reaction.  Instead of having problems leaving her home, she doesn’t want to leave the temporary accommodation.  The meltdown I’d been anticipating came, but for a completely different reason.  Whereas I’m the one stuck and struggling with the past, she is ready to move on.

The forces on our two bodies are equally strong, but pushing us in opposite directions.   Newton’s Law.

I just went to the fridge and tried to take the lid off again, and it still won’t budge.  I think we can safely say that I’m as baffled by physics as I am my girl at times.  But unlike a subject I’ve avoided ever since leaving school, I’ll spend the rest of my life striving to understand the mysterious, perplexing and incredible Pudding.

Written by Spectrummy Mummy

July 25, 2011 at 8:59 am

Paperwork

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Paperwork

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Where do I begin on paperwork?

I’ll start with last night, when we got a thick envelope in the mail containing Pudding’s occupational therapy notes from last year.  I was a little baffled, until I read the enclosed note saying that our insurance hasn’t paid them for services since last July, and if the account isn’t settled in the next month, we are responsible.  Can I mention at this point how I made Pudding leave her beloved first OT who was trained in Floortime, and had an awesome connection with our girl, to go to this one just because it was an “in-network” provider and we’d be able to avoid insurance hassles.  And even though I have to make a 42 mile round trip, and even though my girl’s progress has slowed markedly, we kept going.  For a year.  That we might have to pay for in full.

So now, weeks before moving, I had to sort through all the insurance paperwork to sort out what is going on with them, and hope we can resolve it quickly.  Because the last thing we need to do right now is pay for a year’s worth of therapy.

Or shall I talk about the ongoing saga of the paperwork of a Foreign Service child with four diagnoses?  How every time we apply to a new school, or doctor, or therapist, we have to fill out form after form requiring the same information?  How we have to apply to many schools, because the American or International Schools can’t decide if they will take her until they’ve seen the paperwork.  The school’s paperwork, not the thorough expert evaluations we’ve had done in preparation, and offer to digitally send.  No, that would be too easy.  Paperwork with question after question about what is wrong with her, and never the space for me to talk about all that is right.  So she gets turned down on the basis of paperwork that doesn’t have a hope of describing all she can offer.

Perhaps I’ll talk about my other child.  My grey-area kid who has shown some, but not all, signs of autism since I learned what to look for almost two years ago.  Who has been in a sibling study since the age of ten months that measures every aspect of development, then presents me with a report every few months.  And then evaluated for his OT and PT services through Early Intervention.  How we’re still unsure, so we took him to a Developmental Pediatrician to take a look at him.  And now he has entered the public school system.  We have masses of paperwork on the boy, but we still aren’t certain what is going on with him.  It will take time and more paperwork to figure him out, I guess.

I think I’ll just leave you with the thought that we have all this paperwork and we can’t keep it together.  Our girl gets into our filing cabinet, and drawers and folders, and it gets drawn on, or cut, or ripped.  The chance of it getting lost during moves pales into comparison with it getting destroyed on any given day at home.  The most important things, the IEPs, the reports and evaluations, get digitally scanned so we always have an electronic copy, just in case.  When we move we’ll have it with us, so we can just print it out again if necessary.

Just when we think we might have found a solution to our vulnerable paperwork, Pudding expresses an interest in computers, and I realize how simple it would be for it to all disappear.  If only I could make all the paperwork disappear for good, I’m tempted.  But then thinking about all we’d have to go through to get replacements…..you know it would take even more form-filling.

Written by Spectrummy Mummy

June 9, 2011 at 8:01 pm

Posted in Foreign Service Life

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Comic Relief

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I still feel guilty about not adequately preparing Pudding the last time we moved.  Oh, I know what you’ll say: how could you?  You didn’t know how!  Thank you, friend.  Now I do, and in some ways it is worse.  I’m more responsible this time around.  Somehow I have to make her ready for this move.  The problem is, I don’t know for certain that things won’t change.  We’re still putting her program together, and it looks increasingly likely that we can’t do many things until we’re over there.

The one thing we know for certain, that won’t suddenly change on us, is our housing.  We have been assigned a house, and requested photos so that I can show them to Pudding.  She is delighted with the photos.  She has already assigned everybody their bedrooms, though she does insist she’ll be sleeping in Cubby’s room.  It has a small swimming pool, and a nice garden, so she is very excited about it.  Too excited.  She looks at the photos daily on her iPad.  She asks to go there all the time.

Here is our problem.  Pudding still has a fuzzy sense of time.  We think she understands “now”.  She seems to appropriately use “later”.  She knows her days of the week and months of the year, but just as words, not concepts.  She knows she goes swimming on Sundays, for instance, but doesn’t know when Sunday is in relation to other days.  She tends to insist it is Sunday so she can get to go that day.

We don’t leave until the beginning of August.  While the remaining time is just a flash in the pan for we grown-ups who have things to do, it is an inconceivable amount of time to Pudding.  She wants to go to Africa (we dropped the South part for brevity’s sake) and she wants to go today.  When we tell her we aren’t going today, she just tries harder, convinced she will hit upon the right approach sooner or later.  After all, this works whenever she wants to go to the park.

When our friends were here, we were discussing what we might do for the day.  Pudding wanted to go to Africa, of course.  I explained for the umpteenth time that we weren’t, and she seemed to get it.  It was time to get going, so I asked her to go to the bathroom first.

“Potty for Africa!”  She grinned as she closed the bathroom door behind her.

The Potty for…technique was the reason we had to stop rewarding her for going to the bathroom during potty training.  The little wheeler-dealer would hold it until she extorted a cookie, or preferred treat every time.

We all laughed.  I was reminded of a telethon with an unconventional method for raising money for developing countries.  It sounds like a charity movement, I said.

Don’t worry, everybody here groaned too.  True comic relief.

Written by Spectrummy Mummy

May 26, 2011 at 7:23 am

Moving On (at Hopeful Parents)

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This post was originally published here at Hopeful Parents.

We are now 75 days from moving.  A very big move.  I’m starting to think about packing, but there is much to do before then.  We have too much stuff to pack, far too many things accumulated over the last almost two years.  Much of it we no longer have a use for, but is good enough to be reused or recycled.  I’ve spent much of this month dividing up our belongings this way, and my house is messier than ever.  I crave the piece of mind that an organized house would bring, but there is never going to be enough time for that.

For now, I’m thinking about what needs to be cleared out, and what I need to keep to take with us.

When we moved in, I had a freshly diagnosed on the autism spectrum 2 year-old, and a baby.  Most of our belongings had been shipped ahead to the Panama Canal, waiting for us in a life that wasn’t meant to be.  Friends came to our rescue with with loaned baby equipment and toddler toys.  We bought things too, unable to wait for our belongings and trying to establish a home, little realizing that finances were about to get so difficult.  Everything seemed justified at the time, each new toy or piece of therapeutic equipment seemed so vital, but really, it was just stuff.  Stuff that has been outgrown, or no longer serves its purpose.

There were other things I brought into the house too.  Things that aren’t bought, but cost us dearly.  Like fear, worry, anger, and guilt.  They carry too much weight.  I’d love to throw them out.  I know nobody else has any use for them either, and I certainly don’t need to take them on to the next phase in our lives.   I’m going to at least try, and say that I’m moving on.  Perhaps it will work.

If only we could jettison that extra baggage.  We’d be able to free up space for the things we need to take with us.

The good stuff.  Things I’ve learned along the way that have proved valuable, invaluable even.  Awareness, insight, and education.  I’d love to pass these items on.  I’d like to be able to hand them over to another family like us who could make good use of them.  Gently used, but still in very good condition.  Things that should never be scrapped.

But there are many more things I also need to pack up to take with us.  I can’t live without hope.  I wouldn’t be able to make the move without being able to laugh at myself.  I wouldn’t go anywhere without the understanding that has been two years in the making, but it still unfinished.

And then the big one: support.  It might come in the form of a friend’s email telling me she understands.  It could come from my husband’s arms after a challenging day.  Almost every day I’m fortunate to get a comment from someone telling me they live it too, propping me up when times are tough, and sharing the thousand little celebrations of this journey.  It can’t fit into a packing case, but it comes with me, and I can’t express how grateful I am for it.

These are the things that life me up so I’m ready to take off.

Whether your adventure takes place in your hometown, or the other side of the globe, I hope you only live it with the things you need.  Let me know if you find a way of clearing out the unwanted things for good.  I don’t want to keep accumulating junk.

I don’t need 75 days, and I don’t need to go anywhere.  I’m ready to move on right now.

Written by Spectrummy Mummy

May 19, 2011 at 7:51 am

The next Post

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South Africa (orthographic projection)

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Today we got official confirmation that we will be moving to South Africa this summer.  It will be a huge change for us, a completely different experience.  It will be a lot of change: a new home, new school, new country, new continent.  Three years of our lives.  There are times I feel confident in the tools we have to explain moving to the kids, and there are times I feel like nothing could possibly prepare them for such monumental change.

The biggest challenge is going to be putting together an appropriate program from a distance.  We have a number of options, so now we have to work out which will be the most appropriate.  Pudding’s teacher has offered to liaise with her new educators, reminding me of what an asset we’ll be leaving behind.  We’ve scheduled evaluations for both kids to make sure we fully understand where they need extra support, and how we can best provide it.   I need to find therapists to continue the work we’ve been doing, but also we’ll have the opportunity to try some different approaches, such as hippotherapy, that have been out of our range here.  Broadening our horizons is different ways.

When we’ve worked out the details, we’ll move on to preparation.  There’ll be the mother of all social stories to write, there’ll be role-plays about moving, there’ll be books, and photos, web sites, and videos.  Preparing for the unknown.  There’ll be talking, so many words trying to explain, hoping that they’ll be understood.

There is so much to be done.  But for right now, there is breathing.   Inhaling, exhaling.  I’ve been holding my breath for so long, it feels like a sigh of relief.  A flutter of anticipation.  Johannesburg, here we come!

Written by Spectrummy Mummy

January 13, 2011 at 8:53 pm

Goals

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AutismLearningFelt

I’m joining in the Special Needs Blog Hop, and this week we’re talking about goals for the year.  The very word “resolution” brings out my rebellious side, so I’m hoping that I can stick to goals instead.

1.  The biggest thing is that in the summer we will move to a different continent.  Things still aren’t official yet, but hopefully they will be soon.  It will definitely be a change for us.  It will also be the first time we global nomads have braved this since Pudding’s diagnosis.  I’ve got a few months to research schools and therapists and put together a program we’re happy with.  No mean feat from thousands of miles away.  Ensuring that everybody is happy with that move is going to be the real challenge!

2. Take care of myself.  I’ve been very run down this winter.  Every other week I’ve had a bad cold, and when I feel unwell, I comfort myself with things that don’t help me out.  On days when I exercise, I do much better, so I’m going to try to do a work out every day, which is easier said than done with two little ones.  I need to be on top of my game for all the other things to come together this year.

3. Work on Cubby’s separation anxiety.  It would be nice to go to the bathroom alone, and to go one night where he doesn’t end up in our bed.  We did it with his sister, so I’ve just got to get him to the same point.  If I’m successful, it will lead me to my next goal….

4. Return to work.  We’re a family who desperately needs a second income.  I’ve really enjoyed the last few years being at home with the kids, so this last one will be hard for me.  We’ll see what happens after we move.

5. Blogging!  I’ve really enjoyed the last six months, and I know it is going to be a challenge to keep it going when things get crazy this year.  There are also a couple of other fellow bloggers I plan to meet up with before we leave.  That all should keep me pretty busy, I think!

How about you?  What are your goals for the coming year?

Written by Spectrummy Mummy

January 7, 2011 at 7:23 am