Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘inclusion


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I could hear the catch in my throat as I told the woman she was wrong.  That rejecting Pudding’s application for admission was a mistake, for them as much as for us.  It really was us and them, no matter how she tried to tell us this was in our best interests- not giving Pudding a chance is wrong.

Pudding had gone through a battery of tests for this school.  The first day of the tests as soon as she woke up, I knew she was ill.  I also knew we wouldn’t get a second chance.  I would just have to hope she would shine through.  But when Pudding is ill, everything is too much, and a strange place with unfamiliar people and questions she didn’t feel like answering were beyond her comfort.  The following week she was feeling better, and performed as required, but the decision had already been made against her.

And instead of just denying entry, we had to sit, again, and listen to Pudding’s autistic traits used against her as reasons why she shouldn’t be included.  Once again, this is a remedial school.  A place that is supposed to welcome and support students who need a little extra help.  But the doors are closed to us.

I tried to distract myself from feeling hurt over the weekend.  Hurt isn’t a good emotion for me.  I mope and feel sorry for myself without doing anything.  Doing nothing does…well, nothing for Pudding.  

I’m hosting the book club in our little community this month.  One book particularly appealed to me, Wonder by R. J. Palacio.  I found a short video taster for the book which ended with the line:

“You can’t exactly blend in when you were born to stand apart.”

I quickly downloaded the book, and laughed, cried and cheered on the protagonist through his journey.  It is a work of fiction, of course, but at its heart is a message that held me up this weekend.

It doesn’t matter how nice the campus, how well-equipped the school, the size of the classrooms, or how expensive the admissions process- the only thing that matters is that we find a place that embraces Pudding’s differences.  Not accepts…not tolerates…but truly acknowledges the wonder of our child.  Because then, and only then will she show them how right they are about her.

Written by Spectrummy Mummy

May 7, 2012 at 8:07 pm

A Father’s Anger (guest post by Spectrummy Daddy)

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I haven’t written about this, because I’ve been too hurt, too indignant, but most of all just too weary.  Spectrummy Daddy, however, has settled on angry, and he’ll tell you why.  Please note that LLG (lovely little girl) is another pseudonym for Pudding….

Recently, we’ve tried to find a school that will take Lovely Little Girl.  It can be difficult, but there are numerous remedial schools that have fine reputations here in Johannesburg who aim to mainstream their students.  That’s what we’re looking for, a place that will take her, and help move her to a normal school.  It’s one of the problems we have: Schools won’t take her because she’s only been involved in Autism centered programs, but she can’t get in to a school to give her the chance.  It’s a vicious cycle.

So when we got an appointment with one of these remedial schools and they said they’d take her on a trial for 3 days, I was excited but also a little scared.  3 days isn’t long for someone who isn’t on the spectrum to get acquainted with new surroundings.  Heck, I take at least a week, and I’m purportedly neurotypical.  Still, it was a chance to get going and maybe have her ready for a new school next year.  We didn’t prepare her as well as we should have, but sometimes it is better to have her at her worst to make sure the school knows what they’re getting.  Usually, though, in a new environment LLG is a bit timid at the beginning.  I was hoping she would steal the hearts of the teachers and they would say how excited they were to have her coming the next year.

It wasn’t to be.  They had her for 3 days (actually 2 1/2) and called afterwards to tell us that they couldn’t provide for her, and we should try an autism only school.  Never mind that everyone that has ever had my lovely daughter in a class or therapy tells us that she is a prime example of a child that would blossom with mainstream schooling.  Never mind that you really can’t tell anything from 2 1/2 days of school observation.  Never mind that they used words that showed they were fixated on her being on the autism spectrum.  No, they couldn’t help her.

You know what?  If they truly didn’t have the ability to help my daughter, then I would be ok with that.  I’m not going to force them to take her when it wouldn’t be beneficial to do so.  I have her needs to look out for as well.  What really steams me is that it appears that they didn’t even try.  2 1/2 days doesn’t tell you anything about my lovely daughter.  They said she went on “elopement” during her first day to go and jump on the trampoline.  That’s a particularly “autistic” phrase.  My question is: Did you tell her it wasn’t time to jump on the trampoline, or did you leave her out there to continue jumping?  Did you lay out the rules for jumping on the trampoline?  How many kindergarten children, seeing a trampoline at school, would not go and try to jump on it?  But, because my daughter has autism you assume that she just does her own thing and can’t be told to come join the circle?  REALLY?!?!?

Also, the fact that it was only 2 1/2 days.  That’s all they gave her.  She doesn’t come out of her shell until at least day 3, and even then it’s only a little bit.  New school environment, new teachers, what little kid wouldn’t be a little off.  Heck, I remember crying for my mother when I went to Kindergarten, and she worked in the same school!  (I was a bit of a wuss.)

The worst part is, my daughter loved it there.  She talked about her new school, and cried when we took her back to the school we have her in.  That’s what upsets me the most.  That my wife and I had to tell her that she couldn’t go back to the new school, because it wasn’t to be.  I’ve promised myself that no one will ever tell Lovely Little Girl that she can’t do something because of her autism.  If she wants to be a writer, painter, philosopher, activist or even a mother, no one can tell her no.  She will do what she wants to do, all they need to do is give her a chance.  This school effectively said she couldn’t handle the work they do there, and that we need to lower our expectations.

My response is that my daughter probably would have gotten bored at their school because she is probably smarter than the teachers, and we need to find a place to help stimulate her mind to reach its full potential.  While she needs work on some things (like not poking someone in the chest who wears a Hello Kitty shirt as a way of greeting) in others she’s fine.  Heck, I can’t do lenticular puzzles, but she does them in less than 10 minutes.  She’s already figured out how to use skeleton keys and how to get things from locked rooms without getting caught.  My trouble is making sure she uses her powers for good and not evil.

We’ll find a school to take care of her.  I know we will.  But this lack of trying by a school whose job it is to help those who need help the most still bothers me.  Hopefully I’ll get over it, and one day maybe LLG will use this as the starting point from her speech she gives when she graduates from University at the top of her class.  Even if she never reaches that point, I’ll still always believe she can.

Written by Spectrummy Mummy

March 22, 2012 at 1:04 pm

Including Pudding

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It had been a long day after another long night.  So long, in fact, that I’m writing about this day in the past historic tense, even though it was today.  Yes, today was that long.

My last task of the day (not really, but my last driving task of the day) was taking Pudding to her swimming lesson.  We go twice a week, and normally I don’t mind taking her.  Seeing her so happy in the water makes up for the inconvenience of going there.  And there is inconvenience.

Sometimes it comes in the form of Cubby, who always feels like he wants to come with us, until we get there and he remembers that sitting on a bench and keeping quiet is the opposite of what he wants to do.  Most times I’ll cave in and take him, but occasionally he chooses to stay with Ms. Leia until Daddy gets home.  Today, thankfully was one of those days, because with a nasty croupy cough, things could have been much, much worse.

Most of the time, the inconvenience comes in the form of driving the mean streets of Johannesburg.  There are all kinds of hazards to deal with, to the point that most days I’m convinced I’ve been sucked into a virtual reality game.  If I’m not avoiding kombi buses as they swerve across the lanes while continuously beeping their horns, I’m trying to avoid the erratic truck in front with about 15 men and building equipment piled into the back, or it could be a mother distracted by her toddler IN THE FRONT SEAT, NO CHILD SEAT OR SEAT BELT!!!

Worst of all, though, are the windscreen washers at the lights in this particular route.  That sounds nice, doesn’t it?  Someone offering to clean your windshield as you wait for the lights to change?  No.  It is an act of aggression.  No matter how you shake your head and say no, one of these guys will pull your wipers up, then soapy water will be sprayed on your clean windscreen.  And then if you don’t pay (because security has advised you to NEVER open your window, or in any way encourage this kind of activity), they will threaten you, try to pull off your wipers so you can do nothing about the fact that you can’t see, the lights are about to change, and the aforementioned erratic drivers are honking at you to move.

But I do it twice a week because Pudding loves it, and I’ve written here and here and here about what swimming means to her, and me by extension.

But today, the longest day after the longest night, the 15 minute journey took 50 minutes.  It had been raining all day, and traffic was even worse than usual.  Even though it was still raining, the windscreen washers were still out.  I managed to avoid an incident this time, but my heckles were up.

Pudding’s lesson is only twenty minutes long, with two boys also on the autism spectrum.  There are other lessons immediately before and afterwards, and it is a tightly run ship.  Even though we’d left the house earlier than usual, we arrived just at the end of the alloted time.  I predicted that Pudding wouldn’t be able to swim, but thought I’d try our luck anyway.

Her teacher graciously allowed Pudding to join the next class.  I wasn’t sure how well she would do.  This class had two other girls and two boys, and they were all neurotypical.  I watched her closely to see what would happen.

“New friends, ” she announced, and didn’t try to touch anyone, even though one girl was wearing a Hello Kitty swimsuit.  So, yes, her attention did wander a couple of times, but perhaps not even as much as usual.

And get this: when the teacher constructed a foam diving board, and had the kids walk and jump off it she…didn’t do the same.  She got down on her bottom and scooched along.  A pretty good method for someone whose balance is challenged and can only jump on the spot, not off something.  I wasn’t the only one who thought so, because Girl in Hello Kitty did likewise.

But then, get this: she did it!  She watched the other kids and imitated them perfectly.  She pushed herself to do something that she has never done before, and I’m pretty sure that was because of her peers in the group.

Now, lately, I’ve been mulling over the idea of inclusion.  Pudding has so far exclusively been educated in autism-specific environments.  There are pros and cons to inclusion, and I’m not certain that it would be The Right Thing for Pudding.  But when I see her step up and take a leap like that, it makes me think I should be ready to do the same.  I’ll write more about why this will be such a battle, but for now, just consider that including Pudding made this long, long day turn out to be not so bad after all.  Still, I’m ready for it to finally be tomorrow.

Written by Spectrummy Mummy

March 15, 2012 at 8:58 pm

House of Cards

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You’ve got to know when to hold ’em
Know when to fold ’em
Know when to walk away
Know when to run
You never count your money
When you’re sittin’ at the table
There’ll be time enough for countin’
When the dealin’s done

Kenny Rogers, The Gambler, United Artists, 1978

I’d woken up to an email with the news that a school we’d wanted for Pudding had declined her admission. Really it shouldn’t have been a surprise. I’d sent them all her reports and evaluations, and I’d been very explicit about her needs. I’d made sure they’d seen the worst of her.  Wherever she ends up going to school, they have to be able to accommodate her at her very worst. Even if most of the time she performs well, I need to have the confidence that she can be supported at all times, or I just can’t let her go.  I can’t.  The preschool was part of a regular international school, it would have been a stretch for them, and for Pudding too.

I’d thought they’d get to see her at her best, but they won’t get a chance now.  They folded.  Their loss.

I’d let myself hope that with an aide, and outside therapies, it could work. I’d let myself hope for inclusion, and much needed socialization with typically developing peers.  Her friends and classmates would be other families like us.

But more than that.

I’d pictured a scenario where she went to the local international school on the bus, rather than driving several miles day in, day out, to a special school.  Not only would she be like the other kids, but I’d get to be like the other parents.  I’d be able to consider returning to work.  I imagined a life with two incomes, less money stresses, being able to provide for both kids’ needs.  I don’t know when this started to matter, but somehow I’d stacked up a house of cards, and it had to come crashing down.  My loss.

The rest of my day was busy, but my mind didn’t wander far from the email.  I returned home from Pudding’s occupational therapy, and set back to work on my quest for the elusive perfect school.  We have options, and some of them are very good, but they aren’t very convenient.  And they won’t involve an inclusive setting.  Her loss?  Perhaps, perhaps not.

It would have been a gamble, to see if she could handle it.  We weren’t trying it because she was ready, because it was time.  My gamble, not hers.  My high-roller could have come out winning, but she could just have easily gone bust.  I was playing my hand, not hers.  It is for the best.  The stakes were too high.

Now we are dealt another hand.  I don’t know if there is a pit boss, but I do know the house always wins.  Whichever school is lucky enough to get my girl will hit the jackpot.  And as for socialization with typical peers, I’ll find some aces to stash up my sleeve.

These cards we have been dealt aren’t so bad.  We needed a shuffle, to learn how to play properly.  Every hand can be a winner.  I have to believe that.

Written by Spectrummy Mummy

March 10, 2011 at 11:52 am