Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Facebook

Away

with 3 comments

It was beautiful in the Drakensberg mountains.  There was a stillness I wasn’t used to.  A calm to our days.  It was about peacefully breathing fresh mountain air, rather than rushing around to schools and therapy appointments.  You know what I wanted to do when we first got there?  Tell you about it.  But being all the way up in those mountains, we were far away from an internet connection.  And a sensible, forward-planning kind of person might have stocked up on credit for her own wi-fi hotspot, but I’d left that woman back in Johannesburg.

The funny thing about email, Facebook, Twitter and yes- this blog- is that I hadn’t realised how long a week would seem without them.  Little did I know when we first arrived and I was unable to check in, that a storm would take out our internet at home for the week after we returned.  I was already feeling antsy.  Still, it wasn’t going to hurt me to be offline for a week, after all, there were other things to be doing.

My parents, both confirmed Facebook fans, were also feeling the disconnect.  It didn’t help that their business calls weren’t getting through without Skype to route them to their phone.  Spectrummy Daddy had no such luck in escaping work- his Blackberry was fully functional, and kept him in the the throng of one of those crises that always seem to happen if we go away.  The grandparents got to busy themselves with Pudding and Cubby, giving me lots of free time in one of the most beautiful places I’ve ever been.

Unable to write, I turned to my other special interest: photography.  It was the perfect place to practice different techniques, and almost every direction I looked in I found something I wanted to snap  Then some strange things started to happen with the camera.  Maybe if we’d been back home, I’d have just stopped using it.  No doubt I would have taken it to a camera shop to look at.  But I didn’t.  One day we went to a wildlife reserve, and the first time I picked up the camera, the shutter mechanism broke.  Really broke.  Beyond repair broke.  Gone and we can’t afford to replace it kind of broken.  Sigh.  All this was going through my mind as I was taunted by an adorable giraffe scampering right by our car, and image after image I was desperate to capture.

Now, I’ll be living in South Africa for another two and a half years.  There’ll be ample opportunities to go to reserves, game parks, and safaris.  But I couldn’t get out of the frustration I was feeling, try as I might.  I couldn’t just enjoy the moment.  I was angry with myself because I couldn’t just enjoy the moment, when everyone else was managing to do just that.

Not the first time, I’m reminded of how similar I am to Pudding.  I feel all the frustrations of not being able to communicate easily, and not having things go my way when I try to escape into my own world.  But I’m the lucky one, this kind of situation occurs rarely for me- it is the way my girl experiences this world.  And she manages to do it with a whole lot more grace than I can even begin to muster.

I was glad to get back home, even if it has taken until now to get reconnected.  The funny thing was that Pudding was all happiness and ease in the mountains.  We had a week with improved communication and far more relaxed interactions, including lots of cuddles with the grandparents.  I’m curious about whether it was the altitude that had such a positive effect on her.  Or perhaps she just needed to get away from it all.

At least I got some photos for future Wordless Wednesdays before my poor camera went to the great developer up high.  It was great to get away, but I’m so glad to be back.

Written by Spectrummy Mummy

February 10, 2012 at 6:57 pm

How To Be A Friend

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When Pudding was first diagnosed, many of our friends asked us what they could do to help, and we were completely at a loss to suggest anything.  We didn’t have a good enough grasp ourselves on all the issues surrounding an autism spectrum disorder.  Also, to be perfectly candid, I went through a phase where only I could do anything regarding Pudding.  But we did need help, in many ways.  And we were lucky that our friends found ways to assist us.  Two years on I can identify some of those ways we did, and still do need help.

Here is what our friends did for us.

Waited for us to talk

Keep calling or emailing us.  Even when we don’t reply.  Especially if we don’t reply.  Right after the diagnosis I was too frantic and preoccupied to keep in touch properly.  I’m still grateful for Facebook to let me reach a number of people at the same time.  Remember that a lack of response probably has little to do with you, and a lot to do with other demands on the parent’s time.

Try to gauge if and when your friend is ready to talk.  I’ve described the first few months post-diagnosis as losing my voice.  It took some time to accept the different route our life was going to take, and I wasn’t ready to discuss that immediately.  Don’t be hurt or upset if your friend doesn’t immediately turn to you for support.  My friends were patient enough to wait, and I opened up when I was ready.

Babysitting

We have struggled from the beginning to find a babysitter who would be mature and responsible enough to take care of our kids.  To make matters worse, they both have extreme separation anxiety.  A couple of our friends have come over to sit with the kids once we got them to sleep so that we could sneak out for a date.  They’ve arrived early so that if the kids did wake up, they’d feel more at ease knowing who was in the house with them.  Because our kids already knew them, we felt comfortable leaving.  Parenting special needs children often means that couples don’t get time to themselves, which leads to even more stress.  We can’t thank our friends enough for the times they’ve done this for us.

Bringing a date to us

When Spectrummy Daddy was in Afghanistan, Pudding was already on edge and leaving her at that time was out of the question.  One Saturday night, a couple of friends came over with take out and dessert to take my mind off things.  I’m sure they had better things to do on a Saturday night, but I’ll never forget their kindness.  If you have friends who just can’t get out- go to them!

Keep inviting us

I’ve lost track of how many girls’ nights out I’ve missed.  But once in a while, if a relative is visiting, I manage to get out and catch up.  Those times are a tonic.

Our friends have also continued to ask us to things as a family.  We’re lucky in that Pudding still enjoys parties, so we have been able to attend for the most part.  Our friends have also been very generous about providing allergy-safe foods and activities that are suitable for my kids.  A big point here is that they aren’t afraid to ask about what our kids do and don’t like, and I’m not reluctant to make an exit if it becomes too overwhelming.

Pudding is difficult to engage, particularly in social or chaotic environments.  I’m always grateful for the friends who keep trying with her.

Play Dates

Our kids need to spend time with typically-developing peers, and many are in self-contained classrooms, particularly when they are very young.  Our friends who had a child close to Pudding’s age have been great about encouraging play between them when our schedules permit getting together.  Pudding learns things from play dates that I could never teach her as an adult, nor would she ever learn spending all her time with other kids on the spectrum.

Learn about our kids

I’ve lost track of the number of times a friend has sent me a link to an article about autism, or even a photograph of the White House fountain.  Several of our friends read my blog, and get to learn a little more about the girl who only seems to talk in repetitive sentences when they’re around.  You needn’t write a blog, but take the time to describe what makes your child tick, and what leads to overload.  It took me a few months to become open to talking about Pudding and autism to our friends, but I have no regrets that I did.

Bought from our Wish List

Almost every time we speak to a teacher, therapist, or fellow parent, we learn about some new thing that our kid needs.  Therapy equipment is expensive, and our kids are still kids too.  They like toys, a lot.  Because Pudding likes extra stimulation, we use a lot of new things to keep her interested and engaged.  Friends have bought things like the sit ‘n’ spin and bead toys for sensory input for birthdays and Christmas.  They’ve also bought things I wouldn’t have thought of that have been very beneficial, but more importantly- fun.  Our friends and family have made sure that the kids toys aren’t all about learning, but princesses and trains too.  The only downside?  I never get a chance to write all my overdue thank you cards.

Do it from a distance

Admittedly friendships are harder to maintain from a distance.  But special needs parenting can be isolating, and any way you find to show a friend you are will mean more than we can express.  My friends have sent packages of chocolate and little gifts to show they still think of me.  Even a postcard or letter lets your friend know you care, though you are miles apart.  That way we still feel like we’re part of a community.  Facebook, Twittter and Skype are great ways to keep in touch.

More ways to help

Meetings

If you are able to do so, come with us to important meetings and appointments.  Even after a few IEP meetings, Spectrummy Daddy was unable to leave work, and I was intimidated by the number of people in the room for Cubby’s IEP eligibility meeting.  Even if you don’t know anything about what is being discussed, your presence would be a great source of support.  Alternatively, taking care of the child or sibling would mean one less worry for the parents.  If you can spare a couple of hours, it would make a huge difference to the stress of the day.

Siblings

Remember the siblings.  Often we have to prioritize the child with the most demands, and the other one gets overlooked and forgotten.  Be sure to focus on the sibling so that they don’t learn that the only way to get attention is by imitating the behaviors of their brother or sister.

Food 

Many kids on the spectrum have problems with food and dining out.  Some are very sensitive to textures and smells, meaning that only a few foods are tolerable for them.  Many children can’t handle the noise and activity of restaurants and food courts.  Still others are only comfortable in very familiar environments.  And then there are those with food allergies or intolerances who need to eat a very restricted diet.  If you are the parent dealing with the food issues, I promise that it soon gets unbearable.  If the family are willing and able to get to a specific place to eat, consider taking them out for a meal, or buying them a gift certificate for a meal there.  If not, find out about their list of okay foods, and prepare a meal.  Even one meal less to worry about would be a godsend, and you might even develop a taste for extreme cooking.  Not that I have.

That was long!  Please let me know in the comments any ways your friends have helped you…or ways you’d like them to help.

Written by Spectrummy Mummy

June 21, 2011 at 8:26 am

The Flow of Awareness

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It starts with a drop, which turns into a trickle, which becomes a stream, and then a flood of awareness.

My own journey to awareness started like that.  With a drop of realizing that Pudding communicating differently to her friend, to a flood of life-changing diagnosis.  But that was just my awareness.  That was never going to be enough.  I’m just a drop.  I talked here about how I’d tentatively, nervously updated my Facebook status.  A trickle of people knew about Pudding’s autism.  Then I began a blog, and it turned into a stream.  I talked to everyone I know, and everyone who reads here about autism.  But it doesn’t go far enough.

This is the month for awareness.  Everybody is sick of April already.  You all know autism.  Some of you know Pudding.  You wouldn’t be reading this without awareness.  Bloggers are sick of raising awareness.  They write about it ad nauseum.  They live autism.  They’ve raised awareness in everyone they know.  The stream stops there.  It stops flowing, it becomes stagnant.

When everyone we know has awareness, we need to keep flowing out to everyone we don’t know.  Because once upon a time, we were just a drop, and we were sustained by that same current.  It is hard to imagine there was a time when we weren’t aware, but for me this wasn’t even a long time ago.  This was why it was so important for our voices to be heard by Parents magazine.  Today, my post was published on their site.  All month long we are taking our stories to a new audience, displaying both the diversity of the autism spectrum, and the experiences of the families living with autism.  Spreading awareness, reaching out.  We still need to go further.

We need a flood.

That is where you come in, dear reader.

If you are a blogger, get out of your stream.  Write a post aimed at readers not personally touched by autism, and share it.  Parents Magazine is still accepting submissions.  I know many of you have reservations about that, so find another outlet.  Write a letter to a local newspaper, or post on  a non-autism site.  Link up a photo that encapsulates your life with autism, and link up for a Wordless Wednesday.  Here is the tough part.  Tell everyone you know to share it.

If you are not a blogger, or a writer, or even not personally touched by autism: share it.  Take one of the Voices of Autism posts, or any other blog post about autism that you like and “like it”, tweet it, email it.  Tell your friends and colleagues to read it, for Autism Awareness Month.  You’ll become a trickle of your own.

How do I know?  This isn’t my idea.  My friend S. who I knew from Luxembourg asked if she could email one of my posts to her colleagues.  I’d just been waiting here for people to come to me to read my story, content enough with floating where I am.  She inspired me to keep up the flow by beginning her own trickle.  For the rest of this month, I’m going to get out of my comfort zone.  I’m going to ask everyone I know to do this for me.  I personally find that more difficult than standing in front of The White House wearing blue.

To keep the flow of awareness going this month, we need a flood.  It starts with you.

Written by Spectrummy Mummy

April 10, 2011 at 8:19 pm

All I want for Christmas is….Me!

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AutismLearningFelt
The theme of this week’s Special Needs Blog Hop for this week: What I Want for Christmas.

I’ve already found what I want for Christmas and added it to my Amazon Wish List.

It is Me.

Yesterday I was on Facebook, and I went to close it down, but instead I clicked the area above it, where my “Add to Wish List” button from Amazon is located.  Immediately it linked up my profile to my Amazon Wish List.  Imagine my delight when I found I could purchase myself, for the very reasonable price of $5.99!

I left myself on the wish list, because I can think of nothing else I need more.

Another me to do the housework while I play with the kids.

One to play with Cubby and one for Pudding.  No guilt over divided attention.

I could stay at home with the napping Cubby while driving Pudding to her therapy appointments.

There would be a me to stay home with the kids while another went on a date with the hubby, or had a girl’s night out.

Let’s not forget the homesick me who could fly back to England for Christmas while the other one got to stay here.

I think I might win a prize for the most narcissistic wish, but I’m not deleting me from my list!

Written by Spectrummy Mummy

December 16, 2010 at 4:47 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

Downbeat Funk

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I was thinking that if you asked me what my mood was at the moment- downbeat funk is the way to describe it.  Then I realized I like that expression, and it would be a great name for a band, if I had inherited my dad’s musical talent.  It is that kind of low, where even if someone does something nice for me, I somehow manage to turn it around, and become a killjoy.  There really isn’t much hope, until the holding pattern that our lives are in right now allows us to move on.  I tell you though, we are strapped in and ready to take off.

One of my bloggy friends nominated my blog to receive this award:

http://lifewithasperger.files.wordpress.com/2010/09/flattery-award.jpg

That was really nice of her.  I love reading her blog, she is smart and witty and it gives me insight into the mysterious workings of the Aspie brain.  I’m then supposed to nominate 7 other blogs I read, and then tell you in my blog 7 things about myself.  Now I’m stuck, because I’m in a downbeat funk and I just don’t feel like playing!  If I don’t though, I’ll 1) hurt people’s feelings and 2) violate a blogging convention.  The thought of doing either of those puts me in a worse mood.  Everybody else followed suit, and I’m left like the odd one out, maintaining internet silence, and wondering once again why I sometimes refuse to cooperate?  So I suppose I  should just play along.  Shouldn’t I?  It would certainly consume less energy than what I’m about to write.

I don’t mean to be such a misery, I feel the same way about those email forward things, or those things on Facebook that command action of me.  You know, those “you’re-a-true-friend-now-send-this-back-to-me-and-20-other-friends-or-I’ll-think-you-don’t-care” type of things.  I NEVER do those.  Not ever.  You could be my very best friend, or someone I haven’t seen in almost 20 years, or never met at all, and my reaction is the same.  There must be a lot of people who think I don’t care, but the reverse is true.  I get excited to hear from somebody, only to discover it is a generic forward.  Am I the only one?  Can’t you just send me a personal message?  Can’t I tell you that I like you in my way, and not be obliged to do it on your terms?  There are ones where I’m dictated to click “like” if I love my mother, or husband, or kids.  It makes me want to scream!  If the only way my family know that I love them is through clicking a “like” button, I’m doing something seriously wrong.  We used to have chain letters when I was a child, and I never did those either.  Now with the internet, these things have gone viral, and I refuse to participate.  I will do things on my own terms or not at all!  If I had more time and energy, I’d mount a campaign against these things, they enrage me so very much.

Wow, the rage.  Of course, this isn’t really about the blogging award.  This is about going through a period of time where lots of things are out of my control, and my little blog, my sanctuary, is where I get to have things on my terms.  So, I’ll tell you this:

I don’t read many other blogs than the ones on my blogroll, which I do need to update to reflect a couple of the newer ones I’ve started to read lately.  Those are the blogs I recommend, I refuse to say if I like some more than others, as on different days they touch me in different ways.  So I won’t give you 7 blogs to read, just read my blogroll if you choose to do so.  Or don’t, I won’t make you!

I also won’t tell you 7 things about myself here.  In fact, this misanthropic post probably reveals more about me than 7 factoids could tell you.

I also won’t give anyone else this award, or forward an email, or make you click “like” on something.

I will comment on your blog if I like what you wrote.  I will add you to my blogroll (sooner or later) if I like your work.

I will also try really, really hard to get out of my downbeat funk, so that I can respond with the grace that a thoughtful gesture deserves, but I’m not making any promises at the moment.

Written by Spectrummy Mummy

September 27, 2010 at 10:17 am