Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for October 2010

Turning Pink

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pink ribbon

Image via Wikipedia

Today is October 31st, which is Halloween, which is a big deal in the spectrummy community, for better or for worse.  (In our house, Halloween is adored by Pudding, but we’ll see how her more defensive brother deals with it this year).  But today is also the last day of National Breast Cancer Awareness Month.  I started out the month not paying so much attention.  My mind, as always, is in a million places with bidding, and managing Pudding’s needs, and trying to figure out what is going on with Cubby.  I bought some products that had the pink ribbon on them, checked my boobs in the shower (they’re fine, thank you for asking) and didn’t consider it much more than that.

Someone who reads and comments on this blog, unfortunately, was not so lucky.  At the beginning of this month, I emailed Jen to see if she wanted to go for a coffee.  We’d been reading and commenting on the others’ blogs, and we live so close to each other, it seemed silly not to meet up.  We tentatively arranged to meet the week Spectrummy Daddy was away, but before we finalized our plans, I logged on and read this post she’d written.  And though I hadn’t yet met this new friend, I was in tears by the end of it.

We still haven’t met up for that coffee.  When you’re diagnosed with two kinds of cancer while your husband is serving a tour in Iraq, life gets in the way.  I’ve been left to follow Jen’s story at a distance, as she bravely shares her experience with the rest of us.  She is writing some amazing things, like what we shouldn’t say to someone newly diagnosed with cancer, and exploring all the raw emotion brought about by having her life turned upside down within the space of a few weeks.

At some point soon I’m hoping to tell Jen how amazing she is to write through her pain, how normal it is to have these feelings, and how fortunate I feel to have her as a friend, even if I haven’t met her yet.

One in eight of all women will be diagnosed with breast cancer during their lifetime, please check yourself, and remind the women in your lives to do the same.

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Written by Spectrummy Mummy

October 31, 2010 at 5:28 pm

Social Networking

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I am yet to see The Social Network movie (babysit, anyone?)  but I’m dying to.  From the time I discovered Facebook, I adored it.  It was almost like it was made for someone like me, who is emotionally close, but geographically distant most of the time.  I’ve always been much more of a computer geek than a telephone drone, so I’d found the perfect vehicle to keep in touch with everyone in one place.  Don’t get me wrong, I loathe all those farm/garden/zombie/vampire apps my contacts often play on, but I can hide those from my feeds, and whatever floats your boat anyway, some people don’t like spilling their lives into a blog (imagine!) so I get it.  I like updating my status, and I like “liking” and I can even like my own status.  Who are you calling a narcissist?

Then there is Twitter.  I didn’t start on that until just after starting this blog a couple of months ago.  It made me confused and crotchety, though my close family and friends would tell you that is just the way I am all the time.  Twitter just seemed to be a bunch of people in a room shouting at one another, and I didn’t see the point.  Slowly though, new connections were forged, and I started to figure it out.

The beauty of Twitter is that you can shout at anyone in the room.  If you want a particular person to be in that room, you simply follow them.  I was dissatisfied with Pudding’s experience at the Halloween Dress Rehearsal at The Disney Store, but instead of taking that message to a nonchalant call centre operator, I could shout it publicly at the president of  The Disney Store.  The message that you take to the top?  That is the message that gets listened to.

“@DisneyStorePrez Jim Fielding
@spectrummymummy our events can accommodate many kids, but I am happy to hear more ideas”
Excellent.  Not only is that what you want to say publicly, Mr. President, but it also happens to be what I want to hear.  So I gave him some suggestions, but look at that, he wants to hear some more.  I know we have more, so go and tell him!  Disney theme parks do a great job of taking care of our kids, there is no reason why that can’t trickle down throughout the entire Disney empire.
I think I’m starting to find my voice here.  My voice is part of a collective of voices getting louder every time we deliver our message.
Awareness is already here.  A number of my Facebook friends have taken the Autism Spectrum Quotient test recently.  There are movies, TV shows, articles, and books talking about autism.  These days it is a hot topic.  People are aware, but we need more, and we won’t be quiet until we get it.  We want understanding and acceptance for those living with autism, and that is a message that needs to be heard.  It is a message I’m willing to shout.
There is a campaign on November 1st asking people to avoid the social networks as an effort to raise Autism Awareness.  I will not be part of it.  While I appreciate the sentiment behind the idea, the concept just doesn’t work.  One day of avoiding Twitter and Facebook will in no way represent a lifetime of communication challenges.  Some people living with the challenges of autism are reliant on social networks to communicate with the rest of the world.  They can’t take a day off from those challenges.  For right now, I am speaking on behalf of my children.  I can’t take a day off from that.  We can’t be silent.  Let’s go beyond awareness and get some real understanding and acceptance.  Let’s do that by talking about autism to everyone who will listen.
It is my great honour to use an hour of my time on November 1st to be a guest moderator for The Coffee Klatch’s first ever 24 hour Autism Chat on Twitter.   Please join me there, help me shout a message of understanding and acceptance.  Because people are listening if you shout publicly, just ask The President (@DisneyStorePrez).

Written by Spectrummy Mummy

October 28, 2010 at 7:13 am

Wordless Wednesday Oct 27 10

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Two little girls, and a drug deal*.

Happy Wordless Wednesday / Special ExposureWednesday!

Actually, not so wordless, as I left my regular readers with Great Expectations yesterday.  Anyway, I was going through the photos I took on Friday, and when I saw this one, I just knew it had to be my WW photo.  I’m not doing my usual “ordinary scene of cute little kids playing together, but it is so much more than that” spiel.  Though I could, because this is Pudding and E.

No, I want you to look behind them on the left and check out the drug deal* that is taking place.

Pudding, Cubby, E, her mother B and myself were at the playground of the local library.  A hooded youth with a threatening air came along and sat on one of the benches.  He put his feet up and did his best to look menacing, and he did a good job.  I was taking care of Cubby, and Pudding had wandered off to go down the other slide on the opposite side of him.  B and I called Pudding back to us in that scared-but-trying-to-sound-calm way that you do under these circumstances.  Pudding strolled over and looked at him.  And when I say looked, I mean stared.  The more I called her (with rising panic in my voice), the more she stared.  He stared back at her.  There was an eye battle between Pudding and the 6ft tall hooded chap that would rival any Western showdown.  No words were spoken.  I think my heart stopped beating.  Then he put his feet down, and Pudding walked by him, watching him until he looked away. Then she carried on playing.

Aspie 3 year old, 1 – potentially dangerous criminal, 0.

That is the force of her personality.  She will not be intimidated.  There is either an iron will, or a reckless insouciance, or a heady mixture of both that lets her plunge into life and take what she wants from it.  A force to be reckoned with.  That is why I continue to have such expectations for her future, no matter what.  I know her dogged determination is going to take her wherever she wants to go.

*You’re going to have to take my eyewitness testimony that this was in fact a drug deal.  It may have just been an innocent chap selling candy to high school kids, but this close to Halloween, I think not.

Written by Spectrummy Mummy

October 27, 2010 at 6:58 am

Great Expectations

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You know it wasn't a good day when this is the best photo I took of the whole experience.

Friday was Pudding’s school field trip to the pumpkin patch.  For those who aren’t familiar, a pumpkin patch is where a farm dedicates itself to Halloween and becomes a huge playground with hay rides (being pulled on a tractor), corn mazes, pony rides etc.  For me, a big way of alleviating homesickness is by indulging in experiences that are unique to  the place I’m living in.  We went to one last year, and she had a great time.  It was sensory heaven for my little seeker, and she got to ride a pony for the first time.  Back then we were still learning a lot about her needs and the way she reacted to certain experiences, so it was nice to put a tick in the “likes pumpkin patches” box.

Sadly, the field trip went less well.  Right before we set off, Cubby fell down the steps outside our house and cut his face.  We arrived before the school bus got there, and she skipped about in delight from attraction to attraction.  Of course, Cubby wanted to do the same, and without a second adult, it became a not-so-fun game of kid-herding.  We had the first meltdown when she didn’t want to leave something to find her classmates.  I think the real problem was that she was perplexed by the mix of people from school and home.  As soon as she saw the aides, she hid behind me and refused to speak.  Her teacher took her away, spent some time calming her down, and then had one-on-one time with her.  Unfortunately, this was a small pumpkin patch, so when I took Cubby to see the animals, she saw us and got upset all over again.  We joined back up, but she continued to be miserable unless left to do her own thing.  Her own thing was to wander to the exit, so that became the end of doing her own thing for that day.

Lesson learned- I won’t attend any more field trips for the time being.  She would have had a much better time without me there, much as I don’t like to admit it.  I really don’t like to admit it.


At least we got stickers!

__________

I did keep expectations low in the afternoon.  We had a play date with her friend E., and hearing that the Disney Store was having a Halloween dress rehearsal, we decided to let the girls dress up in their princess dresses.  I wasn’t sure what to expect, so really I should have anticipated an overwhelming and unstructured frenzy of sensory overload.  Pudding couldn’t do any of the games, and kept pulling out of the throng of kids to touch all the shiny things that Disney has to offer a princess-obsessed girl.  I think we can safely say we won’t be trying that again, although I did get the phone number to see if they’d consider doing a sensory-friendly or special needs event some time.

_________

I had great expectations for Friday, and they weren’t met, but I’m okay with that.  There are some things she just isn’t ready for yet, but I wouldn’t have known that without trying.  I continue to set my expectations higher for tomorrow than yesterday.  If we don’t get there today, we adapt, we accommodate, but we keep trying.  One day it will happen.  Something else happened in between these two events on Friday which reminded me that Pudding has a confidence in herself that I can only aspire to, and whatever she expects for herself, she’ll get.

I’d tell you about it now, but I’d rather leave you with great expectations for tomorrow.

 

Written by Spectrummy Mummy

October 26, 2010 at 9:19 am

Places

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“You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.
You’re on your own.
And you know what you know.
And YOU are the one who’ll decide where to go.”

Oh, the Places You’ll Go! (1990) Dr. Seuss.  Random House; Reprint Edition.

I don’t write much about being a diplowife, spouse of a Foreign Service Officer, or trailing spouse (vomit) as I’m sometimes referred to, but as we are going through the bidding process, this part of my life is very much on my mind.  We are still in a holding pattern, but it looks like we’ll be going to one of three posts, all of which are on new continents for me.  Eek.  Life will be different, but then, life has been different for a while, it will just be in a new place.

Last week I  submitted my Wordless Wednesday photo for the weekly State Dept Round Up . It is sort of a blog-hop for diplobloggers- go check it out.  I kind of cheated on the theme of where we are now, because I’m lazy developmentally we’re in a new place and I’m excited by it.

The Round Up this week was quite the experience for me.  Some of the places I’d never been to, but were interesting to look at.  Other places I had.  I taught English in Paris for a year during university, and I can’t look at photos without feeling the pang for my soul-place.  It just gives me sweet, sentimental memories though, and renew my vow to spend my 40th birthday there, having just as good a time as my 30th.  Just looking at the Eiffel Tower made me happy.  I’m English by birth, American by marriage, became a mother in Luxembourg, but I’m Parisienne at heart.

One of the bloggers posted pics of another place we’d been.  It was the temporary quarters we’d stayed in when Spectrummy Daddy had language training in between our move from Europe to Bolivia.  We never got there, of course, because it was while I was staying there that we noticed Pudding’s differences.  Even though the apartments have been remodeled, it was so painfully familiar.  Looking at the pictures was like being hit with grief all over again.  That was where I mourned for my little girl’s future, feared for her interactions with this world, and was terrified that autism would make her distant from me.  Somehow those feelings are tied up in that physical place, and I’ve moved on both literally and figuratively.  The remarkable thing is that while these apartments are just a couple of miles away from our rental home, emotionally it is very far away.

This brings me to this week’s Round Up theme, which is about what I never knew before Foreign Service life.  I guess that what I never realized before is that when you live a nomadic life, you begin to feel very passionately about places.  I knew when I got married into this lifestyle that I’d miss my family and friends, but I had no idea that a place could hurt so much, or make me smile like an old friend.  I didn’t know I’d care more for England as an ex-pat than in all the time I lived there.  I think that this might be why many third culture kids frequently move into careers in conservation.  You can feel as much for the environment as you do people.  And a location can truly make an impression, for better or for worse.  Places can hurt or heal.

We’re ready to find out where we’ll move to next.

Oh, the places we will go!

 

Written by Spectrummy Mummy

October 25, 2010 at 6:41 am

Autism Miles

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A Gif Animation of a Speedometer.

Image via Wikipedia

Here is my week in Autism Miles:

Monday Collected Pudding from school and took her to speech therapy and then home.  32 miles.

Tuesday Trip to expensive organic grocery store for GFCF bread and yoghurt.  4 miles.

Wednesday Occupational Therapist office accepted by our insurance round trip.  42 miles.

Thursday Sibling Study round trip.  In morning rush hour traffic with a hurty back.  Yuck.  110 miles.

Friday Pudding’s field trip.  19 miles.

Saturday Dropping off Pudding at S.M.I.L.E. and collecting her.  61 miles

Sunday TBD, potential day trip to Philly.

______________________________

At least 268 miles this week in the name of autism.  I was thinking about this as I drove to and from Cubby’s sibling study.  I spend more time on the road than your average trucker.  One bonus though, it appears that Cubby’s “special interest” is trucks, so he is quite content being driven around for the most part.

___________________________

Wouldn’t it be nice if I could accrue points with these miles?

100 miles = A brother/sister play time that doesn’t end in someone screaming.

200 miles = Good therapy session.

500 miles = A day without meltdowns.

1000 miles = Spontaneous back-and-forth conversation for more than a minute.

5000 miles = A week with no nagging verbal prompting.

10000 miles = A chauffeur for therapy sessions.

Read the rest of this entry »

Written by Spectrummy Mummy

October 22, 2010 at 6:57 am

Stringing Beads

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Very recently, we have seen an improvement with Pudding’s fine motor skills, and patience.  The combination of this results in a new found ability to string beads.  Yay!  Now that she can do it, she wants to do it all the time.  Pudding is great at practicing an accomplishment she has already mastered, so after an entire year of trying to get her to string beads with no success, she now wants to do it all the time.

I remarked on this oddity of perfectionism to my parents, who quickly informed me that I was the exact same way as a child.  Not for the first time, I thought about the many traits we have in common.  If I’m honest (and what would be the point of this blog if I’m not?) I still shy away from things that are difficult for me, and spend too much time on things I enjoy being able to do.  I guess the only difference is that these days I know I have to do things I’d rather not.

Of course, I’m doing all I can to encourage this new found love of beads.  Grandma and I went shopping last week to the craft store, which was a bold move with Little Miss Touch in tow.  We chose a variety of beads, some regular beads, and some that came in jewelry-making sets.  I sent all but the largest beads back with Grandma to give to her for her birthday or Christmas.  I’m scared of getting her frustrated by progressing too quickly and destroying her enthusiasm.  I needn’t have worried, because she is threading those beads with ease, I don’t need to help in any way.

Yesterday she came to me and asked if she could make a necklace.  I was all for it, especially as I was making dinner at the time and an occupied Pudding means less trouble for me.  She sat down, and diligently strung several beads on her string.  It took her about 15 minutes of concentrated effort to complete her task.  It is the longest I’ve ever seen her focus on an activity, and the fact that she was working those little fingers?  All the better.  I marveled at the effort she put into what is a difficult and frustrating task for her.

When she finished, she brought the beads for me to tie around her neck.  I admired her work and then, HORROR!  My fingers slipped as I went to take it, and the beads scattered all over the floor.  I almost wept, thinking of the wasted effort.  I knelt down and told her in my serious voice how sorry I was to have ruined her necklace.  My tone of voice initially scared her, so I reiterated in a lighter tone that I was sorry for breaking her necklace.

I expected anger, tears, a meltdown, instead, I got…..laughter.  She giggled, jumped up and down, happy and flappy, and said, “Mummy dropped it!  Mummy spilled the beads!”, as though this was the funniest thing that could have happened.  She helped me to collect the beads, then she sat back down on the floor, and began stringing them again, just as sweetly patient as the first time.

Here is where she and I differ.  Had that been a 3 or 4-year-old me?  I’d have had a tantrum.  I’d have been angry even though it was an accident.  Even the other day when I spilled sauce on my freshly cleaned floor, I went mad.  Just as there have been many, many times when I’ve tried and failed to see what could provoke a tantrum in Pudding, I’m just as puzzled by the absence of one here.  I guess she didn’t inherit all of my traits.

Once in a while I wish I could inherit some of hers.  Just not all of them.

Written by Spectrummy Mummy

October 21, 2010 at 7:17 am