Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘questions

Lessons in Asperger’s #1

with 7 comments

Pudding has been swimming with her instructor twice weekly for 6 months now.  I’d be hard pressed to find anyone outside of the teaching profession who so perfectly encapsulates the balance between pushing a child, and being sensitive to her needs.This instructor has a knack for teaching kids who haven’t done well in other swim schools, including other kids with special needs.

Pudding adores her.

I made it clear from the outset that the instructor should feel free to use a zero tolerance policy when it came to not paying attention during the lesson.  Getting distracted could have serious implications in the water, so our alternative was to warn Pudding that if she wasn’t listening, she would have to sit out of the pool.

Of course, Pudding’s neurological mix of ADHD and ASD make it very difficult to maintain her focus all the time.  There are many distractions, both in and out of the pool, which make 20 minutes seem like an awfully long time.  Inevitably, some days Pudding gets put out of the pool, given time to get herself back together, then allowed to swim again.  Her instructor never minds, because it seems like even on those days when it is hard for her to focus, she is swimming well.  Some days she swims well, some days she listens well.  We take either as a good day.

Yesterday, she did both.  She listened to every direction, and followed it beautifully.  For the first time ever, Pudding out-performed her typically-developing peers.  It was one of those beautiful, wondrous days when all the efforts my girl puts in paid off.  And her teacher and I got to bathe in that glory too.

What really made me smile, however, was that after all this time of getting to know Pudding (and other children on the spectrum), there are still some ways in which the instructor is learning.

At the start of the lesson yesterday, Pudding led her friend down the steps of the pool, rather than sitting in the usual place to begin.  Oh my goodness- it was so cute- but not following the rules, so her teacher was forced to intervene, albeit smilingly:

Girls, where are you going?

The other girl stopped in her tracks, and dutifully turned around and returned to sit at the side of the pool.  But I knew, I knew what was going to happen next.  Because I’ve learned lesson #1 in speaking with an Asperger child: Never ask a question unless you want a direct and honest response.

I watched knowingly as Pudding continued on her merry way, only to respond to her teacher:

I’m going down the steps.

We all burst out laughing.  Lesson #1, my friend.  Don’t worry, there is plenty more she has to teach us, just as long as we are always willing to learn.

Written by Spectrummy Mummy

June 15, 2012 at 12:23 pm

The Fix (at Hopeful Parents)

with 2 comments

This post was originally published at Hopeful Parents.  You can find it by clicking here.

On August 16th 2011, Pudding asked me a why question. She was wearing a Hello Kitty top, blue leggings, and Disney Princess socks. I was drinking tea, attempting to warm up after a cool day in Johannesburg proved it really is winter here after all.

As she bounced into the room and her fingers explored every surface, they found the switch of the lamp. She flicked it on and off, as she has done every day since we arrived, but this time it didn’t turn on, and for the first time ever she asked me why.

Just like that. So naturally and spontaneously that a stranger observing might take it for granted. But not me. Every detail is forever etched into my memory. The pounding of my heart and the giddy, elated feeling.

I can’t tell you the day she first smiled, sat by herself, spoke her first word, stood alone, or even took her first steps. I have the memories, but they are pinned down to weeks, not days. Though I’ve been asked countless times on countless forms documenting her development, I give vague answers. 4 weeks, 5 months, 10 months, 12 months.

Those answers satisfy the professionals, looking to pinpoint when her development went awry.  But they don’t satisfy me.

I have replayed those milestones over and over for the last two years, but I can’t get more specific. The truth is that I didn’t accord them the attention they deserved. I was the stranger observing who took them for granted.

Moments after she asked and I even managed to answer her question, I shared this milestone on Facebook. A friend commented that this would herald an exciting new phase of development- the why question being a “gateway milestone”.

I had to applaud her choice of words. No longer the stranger taking milestones for granted, I am now a developmental junkie. I’m addicted to observing the miracle of development, not just in my own children, but in every child I encounter. I can’t get enough, even when I have to be patient with a small stash. I knew that it was a year ago (and four days) since I’d written that Pudding doesn’t ask why. I knew, because I’ve been waiting for this fix ever since.

When I first held Pudding and Cubby, I remember the sudden burst of love I felt for them. Already I was taking for granted so many things: their health, their strength, even their just begun lives. Never again, for either child. I take nothing for granted, appreciating just how fortunate we are.

Likewise with development. Whether milestones are hit strongly and surely (if a little tardily) in Cubby’s case, or later and sporadically as with Pudding, I marvel at them, and the high that they bring.

At times I think of that stranger who soberly observed the milestones in her children. She never knew the intoxicating feeling that rushes through this addict as I witness the many miraculous milestones of everyday life.

After a few hours of riding this high came the inevitable comedown. Was this just appropriate echolalia? And just how long will it be until I hear the next why? I tried to shake my way out of withdrawal by focusing on how huge that milestone was.

Then yesterday at 8.47 am still wearing her nightgown she brought something to me. It was my GPS that I’d removed from the car for my husband to look at. Driving around unfamiliar streets in a new country, I’d been unnerved as it kept dropping the signal, or turning itself off inexplicably.

“Mummy, why is it not working? Is it broken, Mummy?”

Not broken, it just works in it’s own way, on it’s own time. I’m just going to have to be patient about it. But you, my sweet, you are the fix.


Written by Spectrummy Mummy

August 19, 2011 at 1:30 am

Round and round

with 12 comments

The theme of the moment is going round in circles.  Pudding is really enjoying riding the roller coasters at the theme parks.  She is proving quite the daredevil, and the minute she gets off she asks to do it again.

We’re also going round in circles with conversation.  She has a thing about asking questions she knows the answer to repetitively.  She seems to have a real need to know that my response will always be the same.  Sometimes I get playful to get a conversation with her.  Sometimes, tiredness brings out my petulant side and I refuse to cooperate.

Pudding holds her Ernie (of Sesame Street fame) doll right up in my face.

Pudding: Who’s that?

Me: I’m not telling you who it is Pudding, you know who it is. This is endless.

Pudding: It’s not endless.  It’s Ernie.

How is it that every time I get fed up, she finds a way to pull me back in?  I suppose I’d better just sit back and enjoy the ride, even if going round and round makes me dizzy sometimes.

Written by Spectrummy Mummy

December 8, 2010 at 9:11 am

An Ongoing Dialogue

with 11 comments

I struggled to keep up with the flow of conversation.  Everything was moving too fast for me to understand.  I longed for those nonverbal cues I instinctively pick up on.  When is it my turn to say something?  Do I introduce myself, or should someone else do that?  Do I direct my conversation at one person, or talk to the whole room, at anyone who will listen?  The buzz of conversation was going on around me, and I needed to take part in it, but I was thrown by how alien it seemed to me.  Too frenzied, with constant repetitions, butting in where I thought I would interject.  A whole new way of framing questions.  Some people were conversing before I got there, was it acceptable to put my words across?  What do I even talk about?  When I figured out something too say, it was too long, and the words could not come out.  Symbols to decipher that everyone else had already figured out.  I was confused.  I didn’t know the rules.   Where are the rules written down that everyone else seems to get?  It was too hard, on top of a long day.  My brain is just not wired for this, I thought.

Despite my utter conviction to shout out, my first few minutes co-moderating for The Coffee Klatch‘s 24 hour event were all too silent.  I’d meant to go to a “Tweet Room” before the event, but life just got too busy.  I tried several times during the day to show my support, but with Pudding home from school, and Cubby ill, there was just no time yesterday.  Finally in frustration I tweeted that my autism parenting was getting in the way of my Autism Shout Out.  There was no let up for the rest of the day, finally Spectrummy Daddy came home, we ate, and it was time.  No preparation, no time to figure things out.

Then I thought about my Pudding, how she must feel like this all the time.  How she keeps struggling in the face of all her challenges, but she does it anyway.  I took a deep breath, expressed some not-so-meaningful thoughts, and tried to include people in the conversation.  Or conversations.  I don’t know, like I said, I was confused.  I’m not cut out to be a Twitter chat room moderator, that is for sure.  But then again, a few months I didn’t think I was cut out to be a blogger.  And just over a year ago, I really didn’t think I was cut out to be an autism mother.  Sometimes you just have to do things anyway.  Kudos to the gang at The Coffee Klatch who make this look so easy.  I have a deep appreciation for all who brought about yesterday’s amazing event, it was incredible.  Well done everybody!

I’m still in awe of the incredible feeling of support and solidarity amongst strangers.  You can never underestimate the feeling of being amongst those who get it.  I’m humbled by the efforts of adults on the spectrum to ensure that my children have an easier passage through life.  I’m inspired by parents who encourage me to keep going through the difficult times.  When our community comes together, it is worth shouting about.  I lost my voice for a while after Pudding’s diagnosis.  At times I was silent when I should have spoken out.  I’ll make every effort to be part of this ongoing dialogue, even if I can’t always figure out how best to do that.  Though the day is over, some people are just starting to talk, others only beginning to listen.  We’ll have to keep talking until we have understanding and acceptance, and those who need to break the silence know who they can talk to.

Enough of the silence of shame and stigma.  I’m talking about my children, and this wonderful community we all belong to.  I just feel honored to be part of this conversation.

Written by Spectrummy Mummy

November 2, 2010 at 2:49 pm

School’s Out

with 6 comments

Pudding had her last day of the summer session of preschool yesterday.  Two of her classmates graduated up to Kindergarten.  There was a ceremony and a party, and as always with us there is a story.  That story will have to wait though, as I’m back in the trenches full time with my hyperactive pair.  So, no new post today.  That one can wait until Monday.

I’m aware that since Pudding’s diagnosis, many of you have questions that you haven’t broached for fear of upsetting us.  Today I’d like you to ask those questions in the comments.  Obviously I’m no expert on Asperger’s, but I do consider myself the world’s expert on Pudding, so I’ll try to answer where I can.  Feel free to remain anonymous if you prefer.  If the answer requires a longer explanation, I’ll turn it into a post.

I’ve also added a rating system to my posts.  I’d appreciate it if you could go back to your favourite ones and let me know.  I’m interested in what you like to read about.

Okay, back to Pudding and Cubby.  I have a l-o-n-g day ahead of me!

Written by Spectrummy Mummy

August 13, 2010 at 7:31 am

Why?

with 3 comments

Pudding doesn’t ask ‘why?’ yet.  Nor does she appropriately answer when asked why.  For instance an exchange could be:

Pudding: I want a paintbrush.

Me: Why do you want a paintbrush?

Pudding: Yes, give me a paintbrush.

Me: Because you want to….

Pudding: Yes.  May I have paintbrush, please?

She is nothing if not polite, but no real answers here.  So many frustrations could be eased if we could just nail this concept.  She knows that she wants to paint, she knows that she needs a paintbrush to do so.  It is all almost there, just one tiny piece left out.  Another reason, I guess, why the symbol for autism is a puzzle piece.

The “wh” questions are generally difficult for kids with autism spectrum disorders.  Pronouns too, which I understand, because they are slippery little suckers that change around all the time depending on who is speaking.  Does ‘I’ mean me or you?  She gets around it by always using names, which is a smart solution for that issue, but won’t help with “wh” questions.  She actually uses “who?”, “what?”, and “where?” all the time, but “when?” and “why?” are just proving more problematic.  I think “when?” is because she has a murky concept of time.  When she doesn’t want to do something, she’ll frequently tell us she wants to do it “later, on Monday”, even if it is a Monday, for example.  We have included “wh” questions on her IEP, but “why?” doesn’t get included as many typically developing children don’t use it at this stage either, she is not considered delayed.

When we reach this point of being able to reason with her, so she can tell us why she needs something so badly, and I can explain why she can’t have something, it will make life so much easier.  We’ll be able to figure each other out, the start of understanding somebody else’s perspective, the seeds that one day might sprout into a Theory of Mind (which is a whole other post, trust me.  Or just google it if you’re curious).

Of course, “why?” will come one day.  When it does I’ll have to be ready with the answers.  I can do “why can’t I have a cookie?” and even try my hand at “why is the sky blue?”.  Sooner or later though, we’ll get the really tough ones: “why am I different?”, “why do I have Asperger’s?”, “why won’t they play with me?”.  I’m not even close to being able to answer, or at least give a satisfactory answer.  In the case of the last one, I’m not even ready to hear that being asked, but I know one day it will.

The other day I found this site which provides free resources for teaching these tricky concepts, and I made a book of why.  With lots of repetition, we’ll get there.  In a year she has come such a long way, I have no doubt we can do this too.

I may not have all the answers worked out, but I do have a response for when she asks me a “why” I can’t answer: go ask daddy.  Sometimes parenting and spectrummy parenting are the exact same thing, don’t ask me why!

Written by Spectrummy Mummy

August 12, 2010 at 6:55 am