Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘communication

The Gift

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Pudding Notes

One of the great things about international schools (and the reason I push so hard for them to admit Pudding), is that every kid there knows what it is like to be different. Sometimes we have had excellent teachers who worked hard to include Pudding. Sometimes, the kids themselves have stepped up. The last year here has been challenging in a number of ways, but one thing I never had to worry about was other students not accepting Pudding.

We don’t have any explicit social skills teaching here, for better or for worse, but Pudding does have an excellent aide to help her navigate the social world at school. Though her methods for interacting are sometimes perceived as unusual, Pudding has always been socially motivated. And where she has a will, she will always find a way.

Soon she had a close set of girls in her class who became friends. In class they would sit around her. At concerts, sports days, and assemblies they would support her, in a non-intrusive and accepting away. They found her level and they met her there. Her friend Ana* was a natural at this, perhaps having observed her mother, an occupational therapist who had previously worked with children on the autism spectrum.

Last year Pudding wasn’t allowed to participate in Spanish classes, which was a great source of frustration for us all. When I would collect her after lunch, she was often visibly (and audibly) distressed at having to leave her friends. One day her friend Sofia* drew her a picture of the two of them to let her know she was missed too. And so began a correspondence between the two, that continues to this day.

On days that Pudding had a hard time leaving, she now began sending notes to the kids going to Spanish lessons. And here is where things get really special- they sent them back. Concrete reminders that she was accepted and missed. She belonged. I would often find caring notes and pictures from kids in her grade I had never met before. Her ability to connect with children even beyond her close set of classmates.

Sometimes the acceptance took a while longer, but resistance is futile. Pudding took a shine to Cho*, a boy in her class last year, and he was pretty intimidated by the strength of her not-so-subtle affections. Over the course of the year, he went from avoiding her to becoming a good friend.

One of the bad things about international schools, is that most children who attend them do so on a temporary basis, like us. So recently we had to say goodbye to Ana and Cho. It feels no exaggeration to write that Pudding was heartbroken. Pudding worked through her feelings by sending notes.

In the meantime, Pudding’s friendship with Sofia continued. The two progressed from sending notes and pictures to small gifts and tokens. At least once a week, Pudding would come home from school with a gift bag from Sofia, and she would find or make items for Sofia in return. In time we have managed a successful play date, and both Sofia and Pudding are looking forward to the next one.

But she still misses her friends who have moved on. When I mentioned that another mother was going to visit Ana and her family her native country, Pudding knew exactly what to do- she would send gifts to go with her. She carefully selected items, wrapped them in paper she decorated herself, and sent them to Ana. I just heard today that Ana was delighted to receive her present. She was sad that her friends in Argentina had forgotten her, and Pudding’s gift was a concrete reminder that she is loved and missed.

The school has allowed her to attend Spanish lessons now, and she keeps finding other ways to connect with new friends. Her ways aren’t always conventional, but her sentiment is sincere and unmistakeable. Every effort is a gift.

*Not their real names. Neither is Pudding, in case you didn’t know!

Written by Spectrummy Mummy

October 15, 2015 at 4:26 pm

10 Things

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!0 ThingsPudding is about to start first grade in her mainstream school.  She is returning after completing kindergarten, so many things will remain the same, but there are new challenges for her to face.  Most importantly, a new teacher.  She asked me to tell her about Pudding, so here I will try…

1. She is always trying her best

Always.  It may not seem like it.  Especially at 3 am, it can be hard to see it, but she is aways trying her best.  She isn’t lazy, or naughty, or clumsy.  She makes every effort.  Praise her efforts.  Rejoice in her successes.  Never punish her if the results don’t match her peers.  She is trying her best.  Always.

2. Make her comfortable

Sometimes you can’t tell she is trying her best, because she is trying to get comfortable.  Getting comfortable for her could be a lot different for her than it is for you and I.  Comfort needs to be on her terms, and you might have to try a few things out before you both figure that out.  Does she need to be away from the bright light coming in from the windows?  Does she need to be seated close so it is easier for her to hear you amongst the classroom noise?  Is somebody doing garden work with loud equipment?  Does she need to get up and move?  Perhaps a stint in the sensory room.  Try and make sure her every sense is satisfied, and you’ll have a much more comfortable learner.  You’ll even find she tolerates more if you allow her to be in control.

3. Ease her anxiety

This one is easier said than done, I know.  Let her be your guide.  We’ve read the social story all through the break, and she is familiar with the school, but there will be changes to her routine that take her out of her comfort zone.  She knows when she has had enough.  Respect that, and know that if she trusts you, that is already half the battle won.  When she gains confidence, she is bold and resilient.  If she is pushed into doing something, she is scared and stubborn.  Let her be your guide, and she will push herself harder than you could imagine.

4. Speak her language

There are no shortcuts here, I can’t really give you a phrasebook in Pudding.  Communication will be a struggle until you figure out the idiosyncrasies of her language.  You’ll get to know her quirks.  She may reply ‘no’ if you ask if she is okay, and ‘yes’ if you ask if she is fine.  If she is struggling to process something verbally, try a different way.  Always respect her no.

5. Listen to your own language

What you say in the heat of the moment will echo in her heart.  I’m working right now on assuring her that her writing isn’t ‘ugly’ and that she isn’t ‘clumsy.’  Thoughtless expressions like this resonate with her.  She’ll repeat them to me, but worse than that, she’ll repeat them to herself for even longer.  Let your lasting testimony be words that build her up, rather than knock her down.

6. Give her time

I mean this both literally and figuratively.  Remember that she is taking in a lot of other information at the same time as your words, and these need to be decoded before she can respond.  Give her a few extra seconds to process a question or verbal command.  Better still, provide visual cues to assist her interpretation.  If she doesn’t seem to pick something up, try another approach until you get the right one.  You will.

7. Presume competence

Believe in her, and she’ll show you how right you are.  Do otherwise, and you’re both doomed to failure.

8. Help her to belong

She is an amazing, fascinating, beautiful, kind, brave, multi-faceted little girl.  She wants nothing more than to belong in her classroom.  Help other classmates to understand her value, and interact with her in a positive way.  Not just for Pudding’s sake, but for their own too.  Sooner or later, all of us will feel that we don’t belong.  Teach them that everybody does.

9. Embrace the special interests

Yes, you’re going to have to learn to love Hello Kitty.  Special interests can be a weapon or a tool, depending on your approach.  See Hello Kitty as a way of cutting through other distractions and helping her to focus.  You can count the Hello Kitties, write stories about them, paint pictures…the list goes on and on.

10. We’re here

We aren’t going to tell you how to teach, but we can tell you how to help her learn.  The most important thing is that the two of you develop your own relationship, and you learn from each other.  Trust me, I’m still learning from my girl, and I’m constantly amazed at all she has to teach us.

Happy learning!

Written by Spectrummy Mummy

August 15, 2013 at 8:38 am

Gestures

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We were traveling in the car to a village called Clarens for the weekend.  The kids’ grandparents have been visiting, and Spectrummy Daddy thought his parents would like to go to this artists’ haven in a valley in the Free State surrounded by mountains.  I agreed, because I thought is sounded like heaven for all of us.  It was.

But we were late setting off.  I had a work event that day which included Spectrummy Daddy getting hit in the face with a whipped cream pie (I have a weird job).  The event had run late, and then with picking up the kids and getting stuff ready for a weekend away…later still.

We finally set off and hit all the rush hour traffic.  I was getting panicky, because much as Johannesburg has street lights and paved roads, that wasn’t going to be the case where we were headed, and this just isn’t a safe country to be driving at night.  Especially with all the men-folk in a different car with the GPS.

Actually, we did have Cubby with us in the beginning, though I’m not sure he counts as a man yet.  He wanted to be in the girls’ car at least.  As we crawled along in the traffic, I noticed Pudding was the wrong kind of quiet.  I looked back and her face confirmed what evidence supported a few seconds later: she was car sick.

Pudding has been car sick a few times before, but this was bad, and it was already getting dark.  We found a small shopping center off the motorway, cleaned up as best we could, changed clothing, and allowed Cubby to switch back to the boys’ car, which had become much more appealing by virtue of being vomit-free.

Traffic was even worse as we got back onto the motorway.  We inched along, and with cars cutting in and out, were positioned further away from Spectrummy Daddy and the rest of the gang in the boys’ car.  I was trying my hardest to keep their car in sight.  I knew how vulnerable we were without a GPS, especially as it got darker and harder to navigate.

I was more concerned with Pudding getting sick again, and kept checking my mirror to see that she was still okay.  I barely had time to react as a white car swept in from the side, almost hitting mine in his attempt to enter the motorway.

I was furious.  Already upset from the turn our trip was taking, this car had almost caused us an accident before we’d even left the city limits.  But feeling vulnerable already, I tried to keep the road rage in check, I brought the car to a halt so it could enter in front of me without hitting.  I didn’t need to lose what was left of my cool. 

But the man in the white car had turned back to me and was gesticulating, but I didn’t understand what he was saying.  He is saying words too, but I can’t hear them, and the movement of his lips means nothing to me.  I doubt he is speaking English.  

Then he started clapping at me…but slowly.  The hairs on the back of my neck were raised.  He is starting something!  We’re stuck in this traffic, and this guy is trying (and succeeding) to intimidate me!

Or is he?

I can’t understand his gestures AT ALL.  Is he being apologetic?  Does he feel bad that he almost crashed into us and is saying so, but there is a cultural divide?  Is it possible that the slow clap could not be sarcastic?  And a woman is in the passenger seat, maybe I’m getting this wrong.

So I don’t react at all.  I don’t smile.  Or nod.  I don’t shake my head.  I keep my eyes focused ahead as though I’m oblivious.  The traffic is bumper to bumper and not much safe space to manouever myself anywhere, but if he stops, if he is going to get out of the car to hurt us, I’ll pull off onto the hard shoulder and speed my way around.  I’m mentally prepared for highjacking.

But for now, I just need to remain calm and alert.  I don’t need to overreact.

Yet this man seems desperate for my reaction.  He won’t stop with his gesturing and clapping.  Then his wife gets involved, doing the same thing.  And it is dark, and I’m not sure where I’m going, and my kid is sick, and I can’t see my husband’s car, and I’m scared and WILL YOU PEOPLE JUST STOP TRYING TO PROVOKE ME???!!!

And then the wife works it out.  I don’t understand!  So she tries a different gesture, and I breathe a sigh of relief as she chooses a thumbs-up sign, one that even a white western woman like me would be able to understand.  

And I do.  With a large smile I return the symbol, and the man and his wife do the same and we are all smiles and thumbs and nobody gets hurt.  We move on.  Slowly.

We crawl on into the traffic and a night that gets darker and darker.  I have hours of driving to reflect on the incident with the white car and my reaction to it.  I wonder if this is how it can be for Pudding- when you struggle to understand body language and gestures, when communication is both basic and foreign at the same time, does she feel this afraid?  Does she misinterpret smiles as threats?  If an olive branch looks like a loaded gun- how do you ever trust this world enough to make relationships in it?  I’m profoundly aware, once again, that if I faced Pudding’s challenges, I would be curled up in a corner and refusing any interaction.  She takes my breath away with the simplest of actions.

When we finally get there, it is Pudding’s turn top be anxious.  She won’t let me go out of sight in this unfamiliar place.  I try to calm her with my words, and then abruptly realize that she won’t be able to interpret them if she is already feeling vulnerable.

So we climb into bed together, and I offer her my hand.  She recognises the gesture, and moments later falls asleep, her hand still holding mine.  One sweet gesture at least, we both share and understand.

Written by Spectrummy Mummy

April 15, 2013 at 2:41 pm

Behaviour Is Communication

with 22 comments

I didn’t come up with this idea.  It was….ooh, can’t find it.  Probably Skinner though, sounds like one of his.  Feel free to let me know in the comments, I don’t have time to find out this week.  Anyway, behaviour is communication.  I know that.  I’m a Spectrummy Mummy.  I know these things because we get a nice little manual explaining everything with the diagnosis.  No, I’m just messing with you.  I know this through learning the hard way.  There never is an easy way, now is there?

So just to be clear, I know that behavior is communication.  Right?

I also know that my girl has a pragmatic language delay, and that her senses create a bunch of mixed signals, which cause her to be disconnected from her body.  Yep, I know that.  I know things, see.

On top of this, I know my girl.  I know my girl.  I don’t claim to always understand her, but I do know her.

Still, on Monday, all I saw was a terrible day.  I knew her sensory issues were driving her behavior, but that seemed to be all I could see.  She was more impulsive, compulsive, destructive than I’d seen her in a very long time.  I asked myself why, but I guess the part of my brain that figure out these things was too busy trying to deal with the chaos.  Because unregulated Pudding is chaos.  Impulsive, compulsive, destructive chaos.

She was ill.  She felt wrong, and was compelled to make herself feel right, with her sensory-seeking ways.  When they didn’t work, she didn’t stop, she just kept going.  Desperately trying to make it better, angry with me and herself for not being able to fix the problem.  She can’t tell me she is ill, in fact, she says the reverse when I ask her.  Experience has given us clues.  If she talks about wanting to clean her mouth- get a bucket, she is less than 10 seconds away from vomiting.  If she wants to lie down, or needs a blanket, or tells you to clean it up, she is ill.  She’ll tell you she is not sick if you ask her, but she is.  You just have to read her behaviour.

So I can’t tell you why I didn’t think she was ill on Monday.  That I didn’t interpret all that behavior as communicating that basic fact.  If I’d known, we’d definitely have skipped speech therapy.  Who needs that when they are ill?

Yet, aside from that, I wouldn’t have done anything different.  When she got into the fridge and began smearing food everywhere, I found some tactile activities for her.  When she jumped on the sofa and the bed,  I directed her to the trampoline.  When she asked for hugs, I gave them.  When she pushed me away angrily, I let her.  When she screamed, I was calm.  Not a natural calm, but a learned, forced, necessary calm.  A calm almost two years in the making.

I’m not a saint, I was ready for a drink when Daddy walked through the door, I whined to him about all the gory details of the day.  But I’m also a little wiser than I used to be.  I know that behaviour is communication.  And even when, especially when, I can’t understand hers, I need to make sure I’m communicating the right thing.  That I’m here, even when she pushes me away.  That I can’t always make it better, but I will always try.  That when her world feels terrible and different, I will be constant.

You know though, if I could go back two years ago to that Mummy who didn’t know, I’d whisper in her ear what I know now.  Behaviour is communication.  Somebody (damn it, who?) very important came up with that, but before you even try to understand Pudding, you’d better look at your behaviour first.  You can read all about it in this manual.  Nope, just kidding!  Still no manual, sorry.  I keep finding there is still so much I just don’t know, even when I know it.

_______

Today you’ll also find me at The SPD Blogger Network.  Come over and read and share.

Written by Spectrummy Mummy

April 7, 2011 at 6:43 am

Interpreting

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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

Echo, uh-oh

with 14 comments

Pudding chatters all day long. There are certain times, like going to the library, or when I’m putting her brother to bed, or in the early hours of the morning, when I wish she was quiet. I instantly regret such a thought, of course, because speech is such a gift and we’re incredibly lucky to have an abundance, rather than an absence of her language.

Like, oh, just about everything about Pudding, her language is atypical. This was the first thing I noticed in the symptoms that eventually led to her diagnosis. I noticed that while she spoke in long sentences, she couldn’t make conversation. And I noticed that she repeated. A lot. No, even more than that. She had echolalia. She still does, in fact, but it is slightly different in some ways. Echolalia is the repetition of another person’s speech. It can be immediate and delayed. All children go through a phase of echolalia, but verbal children with ASDs go through this period for much longer than children who are typically developing.

Uh-oh, what happened?” Once upon a time, someone (probably me) uttered those words upon seeing a mess, and Pudding’s brain recorded it for future use. Now any time there is a similar situation, this exact phrase is her way of calling attention to it. Her language is not yet flexible enough to tell me what happened spontaneously. Instead, we do a little dance where she asks the question, I repeat it back to her, and then she answers. If I’m patient and attentive, I coach her through the correct way of getting my attention and giving me the information. But because I know, I know, that when she utters that phrase it is because she has done something she knows she shouldn’t, and in my anger, my coaching slips away.

She has slightly modified this to, “What happened to me?” in order to relate that she has fallen down and hurt herself.  This seems to be the way she learns language; using the memorized phrase, then adapts it to her situation.  Doing this is called functional echolalia.  For a long time it formed the bulk of Pudding’s communication, and for an inflexible form of language, it works surprisingly well.  I learned what she was trying to convey, and if her language abilities had ended there, I’d still be grateful that we could have a back-and-forth exchange.

As she is so familiar with the question-answer format, this is her main way of gaining attention. It is predictable, and when your pragmatic skills are limited, predictable is safe. So if Pudding comes up to you and says: “What shape is that?”, she does not want you to tell her. She knew what a hexagon was before she was two, but this is the only way she knows to interact with you, and interaction is what she desperately seeks.  It is one of the things that makes us most hopeful about her future- she wants to be part of our world, as difficult as that might be.

Last year she had less spontaneous language use. If I asked her if she wanted an apple or an orange, she’d frequently respond with immediate echolalia: “Want a apple or orange“.  Other times she’d just repeat the last choice, then get mad if I offered her the orange instead of the apple.  Now she is able to make the correct choice, and even say “yes” which was a long time coming, though strangely enough, “no” was right on track.

More and more spontaneous language is emerging, but she still uses a lot of echolalia.  When she puts her own words together, it is like a tiny glimpse into the future.  Sometimes I get tricked, the way she recently used, “shall we leave?” to indicate she wanted to leave the mall, was also used to exit the park.  I’ve never heard her use “shall” in any other way, but she will, of course, as she assimilates the word into her vocabulary.

She still uses some delayed and non-functional echolalia, I think just because she likes the way the words sounds together, almost like a stim.  For instance, she likes to repeat the phrase “To the zoo“, but she seems to just like hearing it, she doesn’t have any communicative intent.  There are dozens of examples like this, but I don’t really see a correlation between anxiety and her use of them as has been suggested in some texts.  She just likes it, it feels good to her, so she continues to do it.  Spectrummy Daddy and his friends do this with lines from movies too, so it might be something that is here to stay.  It might even perform a social bonding function, assuming others share the same interests.

Many children with delayed echolalia quote lines from TV or movies, but Pudding sticks to other people’s words, and books.  She has entire books memorized, and she could deceive you into thinking she was reading the whole thing, she is fluent, and matches the picture up to the words.  In reality she can read a few words, but nothing like the amount she has stored in her tape recorder brain.  It is truly a marvel.  I’m addicted to everything that comes out of her mouth, created or repeated; except, of course: “Uh-oh, what happened?”,  that I could go without hearing for a few days!

Written by Spectrummy Mummy

September 1, 2010 at 7:42 am