Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘words

Wordless Wednesday 13 Mar 13

with 3 comments

Seven years ago this week, the hubby and I were newlyweds having dinner with friends at this diner.  Like every old cliche in the book, I reached over and took a gherkin off his plate.  One pregnancy test later, and we found we were unexpectedly expecting the wonder that is Pudding.  I still hate pickles though!

Almost seven years ago, the hubby and I were newlyweds having dinner with friends at this diner. Like every old cliche in the book, I reached over and took a gherkin off his plate. One pregnancy test later, and we found we were unexpectedly expecting the wonder that is Pudding. I still hate pickles though!

Written by Spectrummy Mummy

March 12, 2013 at 7:37 pm

Comfort Zone

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In case you hadn’t dropped by lately, this blog has been pretty quiet this year. For someone who normally has an overabundance of words, I’ve hidden behind pictures.

The day after Christmas, I lost one of my closet friends. Even as I type know I feel a pain that I can’t find the words to describe. Rachael was truly one of the best people I have ever known. I’m mad that she was only in my life for twenty years, but I cherish every moment we shared.

She made a disability advocate of me years before parenting would take me that extra step. The world was a better place for having her in it, and I will miss her for the rest of my life. She would have been 35 tomorrow. In the midst of grieving, we had another sudden death in our Consulate community. I’m once again lost for words, and without my outlet, I find it hard to process all this loss. I can’t make sense of the senseless.

Without writing, I am out of my comfort zone. I turned to the next best thing- my camera, and tried to content myself with viewing life through a lens. But there is always more going on outside of the frame.

In the midst of all this, Pudding has truly found her place. She is reaping the rewards of all the support and effort that goes into teaching a different thinker. My girl is reading! Not just odd words and signs, brand names and adverts. She is reading books, and learning to write her own stories.

My biggest wish for her- that she can narrate her own life story- just took a huge leap forward. She will have words. They will delight her, they will inspire her. They will give her comfort when needed. And she will own them. She will own her story.

Last week I met with the Director of Teaching and Learning at Pudding’s school. She asked me if I would take part in the conference they are holding about inclusion in international schools.

I was overwhelmed with anxiety. I can’t do public speaking. I express myself best through the written word, I couldn’t even imagine talking in front of that many strangers. This is way out of my comfort zone.

But how can I not? How can I not persuade other international schools embarking on a journey of inclusion that they need to develop programs for children like mine? They need to open up their doors.

They need to get out of their comfort zone, and so do I. I sought permission from my boss, and he went one better- he offered me his support. He reminded me that what might seem like weaknesses can be our biggest strengths.

I don’t mind stepping out of my comfort zone, if it means helping to persude more schools to do the same thing.

Written by Spectrummy Mummy

January 25, 2013 at 1:04 pm

The Germinator

with 4 comments

If I was a graphics queen, there’d be an image of a Phineas and Ferb germinator right here.  Sorry, all I’ve got is bad puns.

 

I haven’t done a Cubby is Funny post in a while.  Not because he is any less funny, but because there is a whole lot of other stuff going on that pushes it to the back of my mind.  And really, we all need the funny.  It needs to be right at the very front.  Life is just easier with a smile on your face.

Poor Cubby is ill right now.  He has a cough, runny nose, fever and tummy ache.  We’re waiting to go to the doctor in a couple of hours.  Meanwhile, he and I have taken the opportunity to just relax together.  Okay, I’ve taken the opportunity to relax.  He has bursts of hyperactivity, then gets foetal on the floor.  He is only one for cuddling on his terms (he gets that from me!) so I’m begging him to come to me like a needy girl does her bad boyfriend.  This doesn’t appeal to him at all.

What he will do is sit on the sofa with me to watch Phineas and Ferb.  As we watched Dr. Doofenshmirtz makes his latest evil -inator, I asked Cubby what kind of -inator he would make.

A Germinator.

I had to laugh.  Then I wondered, so…is this to take away all the germs that are making him sick?

“Yes…and then SHOOT them at people!”

He really is my boy, what with that sick sense of humour.  Watch out, Heinz Doofenshmirtz, you’ve got competition.

Written by Spectrummy Mummy

November 27, 2012 at 9:37 am

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

Big Little Concepts

with 5 comments

When Pudding was first diagnosed and we met Pudding’s first speech therapist, she asked how many concepts Pudding understood, such as big/little, high/low, up/down.  All of them, I assured her.  After all, this kid labelled a green hexagon at 20 months old, of course she knew that basic stuff.  Of course, she didn’t.  I didn’t understand the extent of her language difficulties at the time, I was duped by how much she knew, and didn’t think to question how much of it she actually understood.

So when Pudding’s therapist asked for the big doll, I was shocked when she gave her both the big and little doll in her hands.  And so began months of unraveling my daughter’s words to see how many concepts she had figured out, and what we still needed to work on.  Helping her second language become her mother tongue.  And months have turned into years of offering a big or little choice, of trying to explain these relative concepts in almost every exchange.  At some point, she understood.  She would identify correctly, but I wasn’t convinced she truly got it.

Now I’m sure she finally gets it.  The last couple of weeks, Pudding has been very demanding assertive about her breakfast choices.  Typically she demands that Daddy makes biscuits at the weekends, and I make pancakes in the week.  It doesn’t always happen, because I’m not the best morning person (some of my family members just choked on that last statement), but when I cave and make her a batch of pancakes, she decides who gets which ones. 

Big ones for Pudding, and little ones for Cubby, in her sweet sing-song voice.

A couple of times I’ve deliberately switched up her orders, and she has turned them back to the kitchen.  She only wants the BIG ones.  Well, at least until she has exhausted her supply, and then her brother’s little ones become very tempting once again.

And it isn’t just restricted to food items.  She correctly identifies various items relative to each other.  Yesterday I asked if her brother was big or little.  Little, of course.  How about Mummy?  Big.  Sigh, she is right on that one too…moving stress is bringing on some serious sensory cravings of wine and chocolate.  I preferred it when she called me pretty!

The girl has it down.  Another little concept that feels pretty big to me.  Little step by little step, we’ll make some big progress.

Written by Spectrummy Mummy

June 13, 2011 at 6:18 am

An Alternative SPD Lexicon

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I finally got around to writing a brand new post for the SPD Blogger Network.  I’ve decided to share with you what my brain thinks when I hear terms like “IEP”, “bilateral coordination”, and “motor planning.”  I’m pretty sure that most parents of kids with sensory issues will agree with my definitions.  If you have any of your own- please feel free to add them in the comments.  You can read the post here.  I guarantee you’ll laugh or your money back.*

SPD- Sometimes Pretty Demanding.
IEP – Incredibly Enervating Process.
Motor Skills – What we develop as we drive our kids from OT, or PT, or ST, school, social skills groups, doctors, and specialists with reluctant, squabbling children doing their best to distract us. Requires…
Motor Planning – bringing enough snacks/ juice/ stickers/ fidgets to keep the kids relatively calm for the journey. Inevitably leads to a…
Gross Motor – how my car looks after all the snacks/ juice/ stickers/ fidgets end up dumped out on the floor.

And while you’re there, take the time to read Spectrummy Daddy’s post and you’ll learn why he is always our superhero, even when he doesn’t realize it.  His entry is part of the Sensational Dads series this June, which you should definitely be reading.  There are some amazing posts on there.  Go on- enjoy!

*Money back offer strictly limited to return on payment for reading the post.  Oh look at that….it is free of charge!  Costs nothing but a click.

Written by Spectrummy Mummy

June 6, 2011 at 6:58 am

Cubby’s Words

with 32 comments

One of my early posts was sharing some of Pudding’s words.  Even though he doesn’t have the difficulties with language that his sister does, I thought it was about time I did the same for her brother.  His quirky little personality is just starting to emerge.  Here are some of the gems we’ve had lately:

.

To me showing him what I thought was a picture of a truck in a book:

No, that’s not a truck.  It’s a backhoe. (To the mirth of nearby shoppers, who enjoy seeing a thirtysomething woman being smacked down by a toddler.)


At the playground, upon seeing the bichon frise dog that once bit me:

Mummy, I see a sheep!

Me: No, honey, it’s a dog.

[angrily, to me] No, it’s a sheep.

[To the dog] Baa baa.  Baa baa.  Sheep say baa.  Sheep: say baa!

Daddy and I were in the car discussing pantaloons, a costume used in the period drama, Downton Abbey.

I want pant balloons, please!

While holding his boy parts as I changed him:

This is a carrot. (I think he misheard “privates”.)

One morning, at the breakfast table:

F&%K!  F&%K!  F&%K!

Eventually:

I need a F&%K! (After much hyperventilating, realizing that he is requesting a fork for his waffle.  Phew.  Not that he’d have gotten that word from me!)

Do you have any kid gems you’d like to share?  It is going to be a long day, putting in the autism miles to get to the sibling study, so I could use a good laugh.

Written by Spectrummy Mummy

March 31, 2011 at 7:16 am

Do you see what I see?

with 20 comments

“I think in pictures.  Words are like a second language to me.”

Thinking in Pictures, Copyright © 1995, 2006 Temple Grandin, Vintage Books.

Our appointment with the optometrist took place.  She didn’t complete all the tests, but we are now armed with the knowledge that Pudding has a slight astigmatism in both eyes.  However, she demonstrated that she could read letters at a distance and close up.  We’re going to need to get her to complete more of the testing to figure out exactly how able she is to see.  Believe me when I say that this is easier said than done.

So I watch her all the time.  I follow her gaze and I try to work out if something is interesting to her.  It is clear or distorted?  Is it making much difference to her vision, or barely any?  Not surprisingly, but frustratingly, I can’t tell.  We are speaking different languages, with no translator to help.  She is learning my language, but I still struggle with hers.  I’m verbose, my ability to visualize is limited by that.  I think in words.

Still, seeing the world through Pudding’s eyes is always a breathtaking experience.  Yesterday we were waiting for the school bus to arrive, and she gazed up into the branches of a tree directly overhead.  She seemed to be in a trance for a while.  I looked up, but saw nothing but the twigs and branches of the tree, and the pale morning sky behind it.  I asked her what she saw, and she responded that she saw a bird.

I couldn’t see a bird.

I moved around to change my position in case it was obscured from my sight, but even after walking around, I still couldn’t see anything but the branches of a tree.  Perhaps her vision is much worse than I thought.  I asked her where it was, and she lifted her arm up in an approximation of a point, there.  Nothing.  Then I watched as she raised her finger again, and traced the letters of her name in the branches.

She sees with more than her eyes.

Later that day we went out for a walk and I took my camera with me.  I played around with the exposure until I got this image.  I really wanted to capture how things might look to her, with her eyes that take in too much light, and ever-so-slightly distort reality.  I may not see how she sees, but I think I found a bird and her name in there.

You just have to really want to see it.

Written by Spectrummy Mummy

February 17, 2011 at 7:20 am

Interpreting

with 12 comments

While in Orlando, we went out for dinner with our Best Man, Chandler*, and his wife, Joanie*.  We were able to leave Cubby with my parents, so Pudding got our full attention.  She was, as usual, initially quiet (anxious) with unfamiliar people, but gradually became more at ease.  Pudding talked about the pictures she was drawing, and her new special interest: Ernie.  That evening she had a thing about whistling, something she can’t do, but is currently fascinated by other people doing.  She asked me to whistle, and  dutifully obliged, and stopped when she ordered no more whistles.  Then she told me she wanted Joanie to whistle.  I wasn’t going to let her off that easily, and told Pudding that she would have to ask herself.  She did, and Joanie also followed our little dictator’s orders.  We repeated this with Chandler too.

Joanie, quite reasonably, felt that the ice was then broken, and conversation could be made.  She asked Pudding a simple question, something she knew Pudding would be able to answer.  I can’t remember specifically what it was, but probably something about how old she was, having just celebrated her birthday a couple of days earlier.  Of course, Pudding ignored her.  I took over, as I frequently do, and asked Pudding directly how old she was, and Pudding answered.  I don’t know why, but she does this all the time.  It might be that she just isn’t paying enough attention to other people to catch their questions.  It might be that she is too nervous to give a response, and she feels more comfortable with a question coming from me.  I don’t know.  Even given plenty of time, she remains aloof.

What followed was a conversation of sorts, with Joanie asking questions, me repeating them, and then Pudding responding.  Parents do this interpreting thing naturally.  You might not know that when Cubby says raff-raff, he means giraffe, because you simply don’t spend as much time with him as I do.  We become masters at decoding what our kids are trying to say.  Perhaps even more so when our children present with communication difficulties.  We interpret because we have to.  Sometimes we are the only ones who can decipher what they want to say, and form a bridge between the parties present.

Lately though, I’ve been feeling increasingly uncomfortable in my role as Pudding’s interpreter.  During that dinner, I wished I could have just sat back, and let the exchange happen without me, however stilted or one-sided that may have been.  Clearly, Pudding still has significant difficulties with social communication.  She can be a chatterbox at times with myself and Spectrummy Daddy, but adding a new person to the mix simply overwhelms her.  I need to keep acting as that bridge until she no longer needs it.

After that meal, I thought hard about why I so dislike playing interpreter.  A friend of mine has been in a wheelchair all her life.  She is intelligent, articulate and social.  She can talk, she just can’t walk.  When we were younger and out together, some people would address me instead of her, even if she was the one buying something, or they wanted to know about her.  It drove us both crazy, and we’d get fired up in righteous indignation.  Just because someone has a physical disability, they are to be denied a voice.  My friend Rebecca* would take great delight in turning such assumptions around and establishing her independence.

And so to Pudding.  I dislike being her interpreter because I fear I’m increasing her dependence.  I’m a crutch that is disabling, rather than enabling natural and spontaneous interactions.  Am I facilitating a conversation, or am I reinforcing an inappropriate way of communicating?  No, I’m not speaking for her.  Yes, I’m trying to encourage her to become independent, but for some reason I feel that I’m doing the opposite.  She is still young.  I hope and expect she will continue to develop her social communication skills over time, with assistance from her teachers and therapists.  I expect I’ll grow in patience over time too, and if this is what she needs me to do, I’ll continue to do it for as long as I have to.  It appears to be another one of those duties that falls under my job description as Spectrummy Mummy (can you tell I used to work in HR?).  I know there are mothers who would long to have a child with Pudding’s communication skills.  I’m incredibly grateful that she is verbal.  It is my role in her communication with the rest of the world that I’m still trying to interpret.

*Names changed to protect the innocent.

Written by Spectrummy Mummy

December 16, 2010 at 6:52 am

The Name Game

with 8 comments

“What’s in a name? That which we call a rose
By any other name would smell as sweet.”

William Shakespeare, Romeo and Juliet (II, ii, 1-2)

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Written by Spectrummy Mummy

October 18, 2010 at 7:31 am