Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘progress

Easy

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I’ve got so much going on this week that I don’t have time to post.  But I’m such an excellent procrastinator, I’ll do just that.  This week, for instance, I’ve got a video conference tomorrow, a cocktail reception on Thursday evening, organise our family to fly out to the states on the weekend, and I need to draft the presentation for a conference upon my return.  Oh, and the thousand other things that I need to do in my job.  But I only work part-time (32 hours a week), so it should be easy.

And then there is the day to day dealing with kids with special needs.  Trying to eke out time with each to put what they learn in therapy to good use.  I’m effectively dealing with three different schools, and two sets of speech and occupational therapists.  Yet somehow I only have two kids, and their needs are comparatively mild, it really should be easy.

I was talking to a colleague today who said I make it all look so ‘easy.’  I had to laugh.  Of all the things my life is…easy would be the worst adjective.

I’m dropping balls, but somehow my juggling act keeps going.  I forgot that one of Pudding’s schools has spirit week this week, and I forgot to dress her up like a movie star on Monday.  Lucky for me that Hello Kitty is a movie star (shut up, she is!) and Pudding always opts to dress like Hello Kitty.

She is helping out in other ways too.  Taking on more little duties as I shirk them.  She has been making leaps and bounds with her reading and writing since starting in an inclusive classroom.  On Thursday Spectrummy Daddy and I will be taking her in to school for a teacher conference in which Pudding will demonstrate her progress.  

One thing I’ve made certain of, even as we get busier and busier, is that Pudding always reads her reading book from school every evening, then I read a story of her choice.  After she has finished, I comment on the reading log sent from the teacher.

I guess Pudding thinks that she’ll save me a job here, because tonight I went to write, and I found she’d already done it.  Her verdict on this book?  Easy.

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I don’t think any of this is easy, my love, but thank you for always reminding me that it is worth it!

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Written by Spectrummy Mummy

February 26, 2013 at 7:24 pm

Art Matters

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For three years now, I’ve opened her school bag to see if I can gleam from the contents what her day was like. My powers of deduction aren’t exactly at a Sherlock level, but I use each clue to tease more conversation from her. My goal is to add some words beyond the script of, “you played with your friends at school.”art

Some days I get some real evidence: her artwork. I’ll ask her if she was learning about snowmen or flowers, or Hello Kitty (because Mr. Holmes himself would deduce that she was education at the Hello Kitty Centre for Learning and Cute Fun!). But for years she didn’t care. She is about the process, not the end result. Art was done. Finished.

For so long, I’ve praised her art, asked her questions about it, showed it to others. But something was always missing. She didn’t care. She didn’t care if we thought it was good or bad. The only way we knew she ever thought it was good or bad was that she was a mistress of censorship, and much of her work was scribbled out as soon as it was completed.

That thing that Cubby seemed to be born with- a pride in his efforts- just seemed to be missing in her. And while parenting Pudding is a welcome relief from the “look at me, look at me” antics of her brother, I wondered if she would ever feel that pride. Pride in herself, pride in what she could do.

deerstalker

It was important to me that she felt it. So even if my words were never heeded, I would take that artwork from her bag and tell how good it was. I couldn’t make her care about her achievements, but she would always hear that we did. Let her hear us singing her praises even if she never wanted to join in our melody.

And then things changed.

Maybe it was being in a classroom with other little people who loved their work and showing it off. Maybe she knew that to compete with a sibling who wants all of our attention, she’d better seek some of it. Maybe all our words sank in. Maybe it was just time.

First she started to show me her work. Then she let me add it to her wall.

And then I guess I missed some one day, and I found that her art collection on her bedroom wall had grown by two pieces. They were fixed so neatly to the wall, that I at first assumed her daddy had added to the gallery. Only I found the box of adhesive on the floor, and I know he would have put that out of reach of the kids. I checked, but it wasn’t him.

When I asked, Pudding confirmed that she’d put her pictures on the wall. I could elicit no further details, but you don’t have to live on Baker Street to deduce that she put it there because she liked what she’d done. She placed it there with care because it is important to her. Her art matters to the most important critic of all.

Written by Spectrummy Mummy

February 4, 2013 at 7:57 pm

Wordless Wednesday 30 Jan 13

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Okay, I’m adding a few words just so you can get some context.  This photo, kindly supplied by Pudding’s teacher left me speechless, which is a kind of wordless. 

This morning, I posted this on my Spectrummy Mummy Facebook page:

When it comes to Show and Tell, Pudding prefers to adopt a Don’t Ask, Don’t Tell policy. We’ll see if she wants to explain why there is a Luxembourg flag in her backpack today.

And then her teacher emailed this:

Show and Tell

With these words:

Pudding did her first real show and share today…so cute!

It’s the first time she wanted to go up…I thought it might be a Welsh flag, but she corrected me and told us that it is from Luxembourg. 

Your girl is amazing…just love her 🙂

If you are familiar with Pudding’s challenges, you’ll probably share my joy.  If not, let me tell you that this is the picture of an everyday miracle. 

By the way, yes- she came from Luxembourg, but the really amazing thing is gettting to see where she will go.

Written by Spectrummy Mummy

January 30, 2013 at 11:44 am

Her Way

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We had our first parent-teacher feedback session since Pudding started Kindergarten.  When we’d first sat down, educators and parents at a large conference table, this was the time we’d earmarked to evaluate our experiment.  Because even though inclusion is commonplace in the US, what we are doing with Pudding is something different here.

So when we’d originally hashed out our plan, this was to have been the day we’d decide if it was working or not.  And if not, it would have meant removing Pudding from this school, and placing her back in a more restrictive environment.

But we knew it was working.  We knew without even seeing her work showing her progress.  We knew from her enthusiasm for school.  We knew from the care and dedication of her teachers that she was in the right place.

Pudding’s teacher told us (as we know) that there are days when she is bright, sharp, and switched on.  And also (as we know) that there are days when she can’t focus at all.  It is hard for a teacher to evaluate- is that progress?

Progress is hard to define in kids like mine.  Tests and measurements rarely show her potential, just her level of interest in being tested at that time.

Pudding started the school year by opting herself out of class most of the time.  She would start a group activity, then go to work one-on-one with the learning support teacher.  She was saying when she’d had enough.  She was advocating for herself by saying, in her own way, that she was overwhelmed.  And then as the weeks have gone on, she is choosing more often to be part of the group activities.  Inclusion, but her way.  I couldn’t be more proud.

And then there are the tangible ways that inclusion is helping.  Her teacher told me that, working in a group of three, Pudding had paid close attention to what her two friends were doing.  She’d coloured and cut out shapes just like her friends.  Not because she was told to.  Not because doing things the same way is right or rewarded.  Because she wanted to.  Inclusion, but on her way.

There were anecdotes galore about the ways Pudding interacted with her school friends, educators and environment that were just so her.  I could write a post for each of them, and maybe I will when I carve out some time.

But for now, I just want to show you this:

This is how we know she is making progress.  We know that where she is happy and comfortable, she will learn.    We know that once she was turned away, and now she is a poster child for inclusion.  The possibility of her leaving wasn’t even mentioned.  We know that she is where she is meant to be.  Now, that is progress.

Pudding’s teacher thinks so too, here is an email she kindly allowed me to share (possibly because I bribed her with french goodies)…

Dear Spectrummy Mummy and Daddy,

As I had a cup of tea and a macaroon, (thank you so much, they were delicious!) I reflected on my day of conferences.  It occurred to me that my conference with you felt a little different from the others.  Was it because I had seen 11 sets of parents before you and felt a little weary or was it because I felt more like a mini celebration?  I think it’s the latter.  Our last meeting together was when we put all our plans in place last school year.  I think we were all a little unsure of how this year would turn out for Pudding and it had a slightly sombre tone.

Today, 3 months down, I felt such a sense of relief when you walked in and looked happy.  I have felt intuitively that  Pudding was doing well and making progress.  It is so hard to do all the formal assessments with her that I do with other children and that hard data is so easy to report to parents.  Often the way I teach Pudding has to come more from a gut feel than from a book or program and as soon as I think I have her figured out and think something will work, she does the exact opposite.

All I know is that Pudding is learning, that she is happy and that she is loved at school.

Yes, she is.  And all because she did it her way.

 

Written by Spectrummy Mummy

November 13, 2012 at 4:57 pm

Better

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Cubby got sick yesterday.  He started with diarrhea, went to lost appetite, and finished up at fever.  We had a stay-at-home day making the most of our new GIANT beanbag (only it isn’t beans and the kids adore the sensory experience) thing.  So there was too much TV and movies, with a little bit of drawing and writing practice, but mostly a comfortable day at home.

Then comes nightfall, and the illness kicked up a notch, as they are wont to do.  He was sick all over our bed, and the diarrhea became worse.  The fever got higher today.  It would abate when we gave him medicine, but then pick up again as it wore off.  The highest it got was 102.7.  In the week, we’d have been straight to the clinic, but at the weekend it gets trickier.  He didn’t appear dehydrated, but the diarrhea was more frequent, and he was definitely more miserable.

In the late afternoon, I changed his diaper and found blood and mucous.  Oops, should have done a warning earlier in this post, shouldn’t I?  I really hope you’re not reading this over breakfast.  Sorry.  Anyway, with that, the four of us were winging it to the ER/Casualty whatever you want to call it.  Last time I went there was with Pudding, and it had been a pretty bad experience.  Spectrummy Daddy pointed out the peanuts(!) scattered on the floor, and I wasn’t hoping for much better on this occasion.

But this time it was better.  They did chide me for only having a GP and not a pediatrician.  But I just took it, without pointing out that our GP knows more about allergies and anaphylaxis than anyone in that nut-infested clinic, and that we did have a pediatrician based in this very hospital, but he died and you didn’t tell us and when we called for an appointment the replacement had too many patients so we had to go elsewhere.  To the GP.

I also didn’t, having learned my lesson the last time, try to tell them about Cubby’s sensory issues, or his hyperactivity, how he could have ADHD, or he might have a dash of Asperger’s.  I kept mum, if you will.  This was much better.  He was just a three year-old having a very bad weekend, and we were just his average family looking for some help.  They found us a room quickly, and the doctor came not much longer after that.

The doctor examined Cubby, who only resisted slightly (progress!).  He decided Cubby was not dehydrated, and the bloody stools were a result of too much diarrhea, probably caused by an infection.  He wrote a prescription, and we were free to go.

Not much of a story, eh?  Well, for me the big story here is what I’m not mentioning.  Have you noticed I haven’t spoken of Pudding?  Pudding, who can’t stand to be cooped up in the house for two days, coped.  And Pudding, who hates the hospital, came along without a peep.  And Pudding, who used to crawl all over the floor and put everything she found in her mouth, sat in her chair and didn’t even notice the peanuts on the floor.  Pudding, who finds waiting rooms too much, waited.  Pudding, who finds the examination room a sensory nightmare, sat in her chair and drew Hello Kitty.

So, while it wasn’t the best weekend, it shows the leaps and bounds our girl has been making lately.  Not just in things she can can now do, but also in the things she no longer does.  Today could have been a hundred times worse.  Today I saw how things are getting better.  Now we only need to hope the same for poor Cubby.

 

Written by Spectrummy Mummy

October 14, 2012 at 9:11 pm

Ready or Not (at Hopeful Parents)

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Hopeful Parents

This was originally published at Hopeful Parents.  You can read the post here.

I was out of sight during a game of hide-and-seek, and Cubby couldn’t find me.  Just a few months ago, this entire scenario would have been impossible.  Before we started Early Intervention, I couldn’t leave Cubby.  Ever.  I couldn’t go into another room.  He could only sleep next to me.  I couldn’t use the bathroom alone or take a shower.  His occupational therapist began introducing games of hide-and-seek for the three of us at the local playground, and slowly, slowly, he got better.  He learned to trust her, and eventually learned to trust that I would come back.

Mummy, where are you?  I miss you!

There isn’t a day that goes by when I don’t marvel at this boy’s language skills.  His ease at expressing himself and his emotions, so strikingly different from his older sister.  I let myself exhale a little.  It won’t be so hard for this one.  He can communicate, he can tell someone else what is wrong.  He doesn’t rely on me to decode every situation, every adverse sensory reaction.

He made other kids of progress too under Early Intervention.  He strengthened his muscles, both fine and gross.  He can hold a crayon correctly, he can jump from one place to another.  He learned to tolerate being touched, and ask what was making the noise.

But there were some goals we didn’t achieve before we moved.  He still struggles with waiting and turn-taking.  He is still an anxious little boy whose attention span is very short.  Most of all, though, he is still a child that can’t always play well with others.  He gets too overwhelmed.  He prefers to sit on the sidelines, observing.  For all the great strides he has made, I still worry.  Of course I worry- I’m his mother, and he will always be my baby.

As his mother I can do so much for him.  I can give him a sensory diet, to lessen his need to spin himself in circles.  I can distract him when he repeats things over and over- echoing his sister’s echolalia.  I can explain things, prepare him, help him understand this at times confusing world.  But I can only do so much.  What I can’t do is be a typically developing peer and playmate.

So today he starts preschool.  He is excited.  He is ready, but I’m not.  I’m afraid that this sensitive little soul will become overwhelmed and will withdraw just as Pudding did when she started school.  Recently we’ve spent a lot of time together, just the two of us.  Over a cup or two of rooibos tea, we’ve talked about school, and how Mummy can’t stay, and the teacher and new friends will be there to play, until I collect him before lunch.  Every day he asks to go to school.  He is ready.  I can’t hide from it, not when he is seeking something more.

So I stepped out of my hiding place.

I miss you too!

I gave him a hug, and he giggled.  Ready or not, here we come.

Written by Spectrummy Mummy

September 19, 2011 at 10:52 am

The Fix (at Hopeful Parents)

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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