Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘progress

Ikea and Quaaky

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Logo of Ikea. Drawn by Mysid on a PNG original...

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When Pudding was about 6 or 7 months old, and making quite typical sounds in her language development, we asked her what she wanted to do that day.  And with Spectrummy Daddy as my witness, she said “Ikea.”

We went, because in August in Luxembourg there wasn’t a whole lot else to do, and popping over the border to Belgium seemed just as good an idea as anything else.  Plus, we liked the waffles there, and Pudding seemed strangely at home in the chaos and over-stimulation of the place.

We kept going, and as Pudding got older, she became more interested in the kids play area they had there, though only kids aged three and older were allowed to enter.

Some time later, we found a place called “Quaaky”*, and I quickly fell in love.  Quaaky was a creche/play area hybrid for kids two and up.  You had to sign all kinds of indemnity agreements, but then you could leave your child fully supervised with qualified workers, as long as you stayed in the shopping centre, and responded quickly to the pager.  Because most kids were already in some kind of child care, it was usually pretty quiet, and there were more attendants than kids.  They had a huge soft play area, reading nook, and craft corner, as well as the regular kid toys.  Pudding loved it, and I loved the hour or so I got to myself.  I’d sit in a cafe with my big belly and a hot chocolate.  Yes, and a pastry too- why deny it?

Because I was pregnant with Cubby and pretty worn out from my hyperactive toddler, I began going once a week.  She always had a good time, and would tell me that she “had a good time with boys and girls.”  I didn’t realize back then that is was a script, nor did I think too much about the fact that she didn’t play with the others.  I was just impressed at my two year-old speaking in sentences.  The other kids typically spoke French, German, or Luxembourgish, so that explained why she never spoke to the other kids.  Of course, we know differently now.

Then one time I was beeped.  She’d tried to open the gate, and was redirected by the staff.  So she tried again, and again, until she had a meltdown, and they paged me to get her. Once she realized she didn’t have control, she never wanted to go again.

Back to present day, and back to Ikea.  We’ve gone there a couple of times over the last couple of years.  Pudding always wants to go to the play area, and against my better judgement I allow her.  Every single time I’m beeped a few minutes later when she gets overwhelmed.  The first couple of times I’d explained to the staff that she had autism, but I soon found there was no need.  The second she showed any discomfort, they’d page me.  One time only three minutes had passed before she wanted me to come back.

It isn’t worth it to me, for Pudding to become so upset when it is so much easier to keep her with me .We have to walk past the play area to enter, and even though I try to dissuade her, she wants to go every time.  Saturday was no exception.  I reluctantly agreed to her request, knowing that I’d be traipsing back through the maze that is Ikea before I knew it.

We sprinted over to find the Smörgfaast we needed, and we actually managed to find them and had time to decide they weren’t for us.  I checked my beeper- nothing.  We found some Mjerkling and Djarrbörg instead, and went to pay for them.  We made it through the checkout- still no beeps.  There is a 30 minute time limit anyway, so I made my way over to find her happy and holding hands with one of the members of staff.  She’d even made a craft during her time there.  Of course, she only gets comfortable when we are about to leave the country!  She told me she had “fun with the boys and girls”, but this time I let myself believe she meant it.

On Wednesday we were in the car and she found the craft she’d made on Saturday.  I asked her about it and she said she’d made it at “Ikea- like Quaaky.”  It is still incredible to me that she remembers things from over two years ago.  But that memory of hers is one of the things that gives me hope.  So many times she had wanted, and tried to have this experience, but she just wasn’t ready.  Now she did it, and I hope that accomplishment makes a permanent impression.

So instead of looking at it as over two years of failed attempts for just one successful visit, I know this was as many times as my girl needed to get comfortable and keep challenging herself.  And I know that with a little time, and a lot of patience, she’ll do anything that she sets her mind to, including having fun with boys and girls.  If I’m very lucky there’ll even be a hot chocolate or a waffle in it for me too!

*Apparently the sound a Luxembourgish frog makes, which is weird, but then so is “ribbit.”

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Written by Spectrummy Mummy

July 21, 2011 at 9:16 am

Flashbacks

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For most people, life goes on.  The years are punctuated with transitions, but for the most part time seems linear.  Day by day, month by month, then year by year, time passes.  Not so for us.  Developmental disorders play tricks with time.  Some things are s-l-o-w-e-d right down, for better or for worse.  There is truly something magical about witnessing childhood in slow-motion.  Every breakthrough is a special gift.  And just when you think you start to understand, you’ll find yourself living through something that you thought was left behind.  Then suddenly your kid is catapulted through progress, and a new phase of development begins.

Cubby is the exact age that Pudding was when we noticed her language difficulties.  So many of the things that we noticed in Pudding at this time are emerging in him.  It becomes impossible to tell which things are sensory processing challenges, which are behaviors imitating his sister, and what might be autism.  Time will tell, but time moves slowly haunted by these ghosts.

Foreign Service life plays tricks with time too.  The line of time becomes a series of connected cycles.  Move, adjust, live, prepare, move.  Somewhere between prepare and move, the whole process takes you back to the beginning.  Right now I’m living through an almost constant feeling of déjà vu: the same events, places, people, and emotions from two years ago.  I say that I don’t know if I’m coming or going, but they cycle moves on even if I feel trapped in time.

Cubby’s IEP meeting took place in the same place as Pudding’s first one.  The same school and the same room.  I sat at the same table.  So I wasn’t present for that meeting.  My mind was somewhere two years previously.  Afterwards I’m finding it hard to forgive myself for not pushing harder for more services for him.  Of course, we are moving, so Cubby won’t go to school there.  Things will be different for him, but when I flashed back, it felt eerily familiar.  Defeated and voiceless.

On Thursday we drove by the apartments I talked about here.  I still remember sitting on the couch next to Pudding, trying to see if she would look at me when I called her name.  Like time paused back then, the details are so vivid…the fabric of the sofa, the taste of salty tears, the too-bright orange of goldfish crackers that she could eat back then.  I’m bracing myself for our return; we’ll stay there for a week before we leave for South Africa.  I snapped out of my reverie to tell the kids that we would be going there soon.  Prepare.

Pudding looked out of the window as we passed by.  “It’s got a swimming pool.”

I can’t speak.  Does she remember?  It was two years ago, she was only 2 1/2 years old…how can she remember?

And a playground.”

She remembers.

I wonder what else she remembers.  At the time she didn’t seem to pay attention to our distress.  I thought she didn’t notice when I cried, and I cried there a lot.  I know better now.  I know she is always taking everything in.  Maybe she can’t respond appropriately, maybe she doesn’t have the language to tell us, but she remembers.

If I think I’m having flashbacks, I don’t know what it must feel like to her.  We may be going through a cycle, but that doesn’t mean we can’t change it.  Record some good memories over the painful ones.  So in these last few weeks, I’m winding down the therapies, easing back on commitments.  Making the time about them.  Celebrating time, instead of fearing it.  So when these flashbacks return, as they will in another cycle, we’ll welcome them.

Before we know it, we’ll be flashing forward to something new.

Written by Spectrummy Mummy

June 26, 2011 at 12:31 pm

Big Little Concepts

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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

Buy one…

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Last week we returned to the hospital for the results and recommendations following Pudding’s reevaluation.  As you may recall, I was worried leading up to the appointments, but managed to reevaluate my own perspective for the actual testing.  Spectrummy Daddy was going to stay at home with the kids, but at the last minute decided we were all going.  I think he thought I as perhaps less calm than I appeared, but I reassured him.  She already has been diagnosed with an ASD, a lifelong condition, nothing is going to change that.

Actually, we do know that some individuals who meet the criteria for an autism spectrum disorder in early childhood no longer do so in subsequent evaluations.  It seems like early intervention can be incredibly effective for some children.  Other children receiving the same services, however, do not make the same improvements, and we don’t know why that is.  We know that therapy is essential for all children, but we can never tell how much progress will be made.

Pudding is in an intensive ABA/VB based preschool autism class.  She also receives private speech and occupational therapies, and we work on developing her skills at home.  We’ve seen her make progress in many respects since her diagnosis.  And yet, we’ve seen new difficulties emerge at the same time.  I knew we weren’t going to be one of the families to be told that their child no longer has autism.  At the same time, I’ve come to terms with Pudding’s differences, indeed, they are part of what makes her so special.  My job is to ensure that she has the best program for her that we can provide, which begins with accepting the diagnosis, and adopting the advice that we had come to hear.  We do the best we can with what we have.  So now let’s see what we have.

The psychologist began by confirming what we suspected: she does indeed still meet the criteria for ASD, and Asperger’s Syndrome is still the best fit for her (until the DSM-V gets rid of that diagnosis).  Her overall language scores were higher than average (pragmatic language of course being the exception).  The rest of her learning profile was very erratic, and in some instances, she performed comparatively worse than she had in 2009.  However, at the same time, she did better at the tests measuring ASD.  She is still an aspie, but less so than she used to be.  Right.

There was more.

She now meets the criteria for ADHD, and the doctor feels that her problems in this area go above and beyond the attention problems associated with Aspergers.  It is possible to have Asperger Syndrome and not have ADHD, but that is not the case for Pudding.  Okay.

There was more.

She also acquired a diagnosis for Developmental Coordination Disorder (also known as dyspraxia).  Her fine and gross motor delays going beyond what would be expected with an ASD.  Well, if you’re sure.

There was more.

One last diagnosis of a Sleep Disorder.  We’re done, right?  Right.

Well, she has to be monitored for non-verbal learning disorder, as she is skating close to the edge of picking up that diagnosis too as she gets older.  I’m only surprised we didn’t gain an anxiety diagnosis there too while they were handing them out so freely!  Buy one, get three free.  The deal of the day, if shopping for diagnoses.

The doctor strongly felt that each of these issues are profoundly affecting her ability to learn and benefit from the therapies and services she receives.  So we need to look at each diagnosis separately to see how it impacts her and what the best overall treatment will be.  We have a lot of recommendations for her program, so now my job is to put the program together for South Africa.  That is the very definition of easier said than done!

She left us with the wise words that just like the first time we met, and Pudding was still our girl- not the diagnosis- so she remains today.  Even if we’ve added a few more diagnoses to the mix.

That is my girl: always a little more than we’d bargained for.

Written by Spectrummy Mummy

May 12, 2011 at 7:18 am

Results

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This was going to be a very different kind of post.  Very early yesterday morning I started to write through a very bad mood, and in the process of doing so, had a revelation, and ultimately came to a resolution.  Now, the working through of the problem is worth a post in itself, but that will simply have to wait for another day, dear Reader, as I’m far too excited about the results of my solution.  I know that I’m being cryptic, but just bear with me.  I become far less coherent when I’m giddy, as anyone who has ever had a drink with me will tell you.

So my resolution was that I had to be more positive.  That my negativity was causing havoc on the rest of the house, and creating a vicious cycle of anxiety.  It isn’t that I didn’t have justifiable reasons for feeling negative, and I do have every right to go a day or two without being Ms. Perky Perfect, but as I was the only one capable of breaking the cycle, I needed to do so, or face the fact that things would only continue to spiral downwards.

I resolved to do so with all the gusto of someone who had been awake since 4 am with a two day-long headache, and really needed it to end.  Pudding needed to do calming activities that she liked and were rewarding.  Two of these activities had been incorporated into her reward chart, so it was time to get working on them.  Pudding does a listening program that was prescribed by her first OT.  She listens to modulated classical music through special headphones.  We’ve noticed an improvement with her anxiety when we do it, but she resists the activity, and I hadn’t felt like fighting her.

With the promise of a token, I coerced her into doing her music.  We went downstairs to draw on her easel, and I helped her put on her weighted vest.  Usually we draw together: she likes drawing people, and I get the more difficult requests, like “Easter” or “aquarium.”  This time I drew a cat, and asked her to write it.  She’d only ever written her name freehand before, I was expecting and instant refusal, but she wrote each letter as she sounded it out C-A-T.  Her first written word!  Only last week in her evaluation I’d said that she couldn’t do it, and here she was amazing me.  That was enough of a result to keep me happy, and reward the positive approach, because, you know, Pudding isn’t the only one who needs positive reinforcement!

But then…

She told me she was going to draw me.  Nothing new there, she likes to draw people.  But after she finished she wrote as she sounded out M-U-M!  I knew she was able to spell cat from an app on her iPad, but Mum was something else entirely!  Afraid it was just a fluke, I asked her to do it again.  She both drew and wrote it again.  She didn’t write Dad when I asked, but she did a very good try at her brother’s name.

And then I ran for my camera, because I wanted to keep this memory, and if negativity overwhelms me again, I can click on this page to chase it away again.  It took some working through to get to my solution, but I think you’ll agree that the results are worth it.

I'm the purple one, the pink one is a self-portrait.

The second one is more legible.

Written by Spectrummy Mummy

April 28, 2011 at 6:50 am

Cubby’s Words

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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

The Tracks of my Tears

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So what I didn’t refer to in yesterday’s post were the tears.  At one point in the afternoon, I was a little puddle.  I’d been holding on for a few days.  I’d wanted to cry when I locked Cubby in the car, but that would have only made the situation worse.  I’d wanted to cry when I felt ill the next day, but there didn’t seem much point by then.  I’d wanted to shed tears of forcing a claustrophobic Pudding to stay inside, but I held back.  And I really wanted to cry upon hearing about the 16 hour flight, but somehow managed not to.

I pride myself on my stiff upper lip from my English heritage.  I felt that I’d cried too many tears when Pudding was first diagnosed.  I vowed not to waste any more on something I couldn’t change.  A useless, self-indulgent act.

I’m stressed to the point of tears, and I don’t let myself…because it is self-indulgent?  How else am I going to indulge myself?  When am I going to indulge myself?  And at what point do I let myself break?  So I reclined on the sofa, and let the tears fall.  My inner Englishwoman did chide me for being so ridiculous, but I just gave in to it.

After a few minutes, Pudding came to find me.  “I want wheels on the bus song.”

I ignored her.

I don’t want to admit this, but I was waiting to see if she’d notice.  She didn’t.  She wasn’t looking.  Her mind was on hearing the song she wanted, my feelings not relevant right then.  I wasn’t feeling like making it a teaching moment.  There will be other opportunities to demonstrate how to show concern.  I cried some more, I was being indulgent anyway, why not gratify myself with a few more tears?  I let them flow.

She asked again, a few times, until I asked her to leave through my sobs.  I’m not proud.  Hardly my best parenting moment, but I justified that she needs to see emotions if she is ever to understand them.  I know, my inner Englishwoman is rolling her eyes too.

Once Pudding had made her retreat, Cubby entered.  He saw me crying and stopped.  His face contorted into a sob, but somehow he held himself in check, and didn’t make a sound.  It was a look of…concern.  Something I’d never seen him do before.  Previously when I’d hurt myself, or Pudding cried, his reaction had been to cry too.  I fell down the stairs some weeks ago, and he cried for 20 minutes after, even though it was my ankle that was hurt, and he was just a witness.

“Mummy’s crying…..Mummy’s sad.”

We label emotions a lot, so I wasn’t surprised he had detected this one.  But I was surprised by what he did next.  He crawled up on the couch next to me, and grabbed a lock of my hair.  He just sat there, his head resting on mine, stroking my hair.  Trying to comfort me in the way that works for him.  I took it.  Before long the tears stopped flowing, and I dried my face.  I gave my little guy a hug.

He looked at me and asked, “Mummy happy?”

I told him I was, and we left to join his sister for wheels on the bus.  I gave Pudding a squeeze, though she hadn’t solicited it, and didn’t particularly welcome it.

As Cubby nears two, I can really see the different developmental tracks they are taking.  Different, not less.  Pudding will get there, at her own pace.  She is still in the race, and there is no prize for winning.  What comes naturally and easily to her brother is an arduous task for her to master.  Though Cubby has some challenges too, they pale into comparison with those of his sister.
Some kids get to sprint, others must face a marathon.  I’m proud of her, and all her efforts.  Truly, her determination takes my breath away.  Her spirit keeps her on track, instead of sitting on the bench.

But I would be lying if I said it doesn’t hurt at times as I watch her get overtaken.  Those tears will have to fall too, useless and indulgent as they may be.

 

Written by Spectrummy Mummy

March 11, 2011 at 7:24 am