Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘IEP

Echo Echolalia

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Pudding has a new script as we drive in the car.  She looks out of the window at the buildings.  When she sees a house, she repeats:

That’s a house, and you remember this house.

And then we pass another house, and she’ll say it again:

That’s a house, and you remember this house.

Every time we pass a house.  Every time.  Sometimes we pass buildings that aren’t houses, and she demands to know what they are.  It doesn’t matter if I’m driving in rush hour traffic with idiots on their phones who don’t look when they change lanes (calm down, Spectrummy Mummy); if we pass a building and she doesn’t know what it is, that must be rectified.  Luckily she has that awesome memory on her, and a near GPS-like mapping skill, so once she has been told it is a hotel, or a mall, and then checked on the veracity of that a subsequent time, she is cool.

That’s a house, and you remember this house.  That’s a house.  That’s a house.  That’s a hotel.  That’s a coffee shop.

As I imagine it, she is talking through adding it to her mental map.  Then each time, checking that map hasn’t changed, and adding a little more.  It is pretty cool that she finds ways to make her world more ordered, so I don’t get too irritated by it, even though we spent a lot of time working on my motor skills.

Until Cubby does it too.

At first he would just immediately repeat everything she said, to Pudding’s great delight.

That’s a house.  (That’s a house).  That’s a house, and you remember this house.  (That’s a house and you remember this house).

The two of them were greatly amused by this game of Driving Mama Crazy.  But then Cubby started doing it when Pudding wasn’t around too.  Using the exact same words as his sister.  Echolalia of echolalia.  I can generally distract him, but left to his own devices, he repeats the script at length throughout the journey.  He repeats at other times too, but not consistently.

Does he have echolalia?  Does his brain work in the same tape recorder way?  Cubby has advanced language skills for his age, but he doesn’t always use his words socially or flexibly.  Does echolalia fill a gap when he doesn’t have the skills to communicate effectively?  At times echolalia seems to perform the same function as it does for Pudding.

Or is is something else?  Is echolalia normal to him because that is what he has heard all his life from his big sister?  Is it reinforced by her laughter and encouragement?  If Pudding was no longer echolaic, would it die away with him too?

All these things pass through my mind whenever we’re in the car together.  Is history repeating itself, or is is just my boy repeating my girl’s words?  Echo echolalia.  And can I tell myself that he is merely copying all those spectrummy behaviors that we see in him now?  She spins in circles, flaps her hands, and has meltdowns, so why shouldn’t he?  But what about the spinning wheels, his difficulty with transitions, the way he gets overwhelmed when there are more than a couple of kids around?  These are things that Pudding doesn’t do.  It is so hard to tell what actions are *his* and what are a result of being a younger sibling in our home.

Certainly this afternoon I’ll be thinking about these things some more, as I drive my grey-area kid to his IEP eligibility meeting.  And yes, it is crazy that we’re going through this Incredibly Enervating Process again weeks before we move to another continent.  But if we’re going to have a repetition of what happened last time we moved, I’m going to be prepared for it.

 

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Written by Spectrummy Mummy

June 9, 2011 at 7:23 am

The Reward Chart

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I promised an update on what happened with the reward chart, so here it is.  Hopefully this will help anyone else wanting to give this a try.

This was the chart I bought.  It comes with some ready made chores and various circle tokens.  There are also rectangle tokens for completion, and some blank ones to make your own chores too.  The first important thing was positioning.  Pudding would just play with (and lose) the magnets, so I put it up high where she couldn’t reach.  I took on board the suggestion of having a picture of the object she is working for, and found a picture of Abby and taped it up on the wall.  I’d managed to find a smaller and cheaper Abby doll than the one she initially fell for to use as her reward.  For the first trial, I didn’t want her to have to wait too long, so I gave just three chores, and only five days to earn them.  I only put things on there that I was certain she is capable of, so I opted for the following:

  • Get ready for bed (we’d still help with brushing teeth and bath, just taking off her clothes and putting on nightgown)
  • Get Dressed (I’d lay the outfit ready for her, no buttons or zips to contend with)
  • Say Please and Thank You (she is pretty polite, so thought this would be an easy one for her)

After the first day, I realized where I’d gone wrong.  The problem lies with the last one.  In many ways the reward chart is like a mini IEP with goals.  Those goals have to be measurable.  Getting dressed and undressed is pretty obvious.  Please and Thank You, however, get tricky.  Do I demand that she says them without prompting for every request?  Do I just require 50 % compliance.  There is another thing too.  She is a polite kid, especially when she very much desires the item.  So what happens if she asks for something I don’t want to give her (say, a cookie before dinner) and she asks very politely?  And she asks over, and over again (say, every night).  Still politely, but kind of a ceaseless polite whine, even when I’ve said no.  I don’t need to encourage that.

Given that we were just trying to make this as easy and fruitful as possible in the beginning, I just awarded the token for any saying Please and Thank You at least once in any given day.

The other two goals were much simpler.  She gets dressed fine at the weekends when she is going somewhere she wants, but it has become a chore to get her to do it in the morning before school.  Likewise, getting ready for bed signals the end of the day, and that comes with battles when she doesn’t want that to happen.  The reward chart works great here.  I still have to nag remind her that she needs to do it for a token, but the token does appear motivating enough on most days to get her to do it.  Success.

Every single day she asked me for the Abby sticker (the picture I taped to the wall).  Perhaps because our previously unsuccessful attempts at reward charts had involved stickers, she thought that was going to be the prize.  I gave it to her, of course, when she completed her goals, but the smile on her face when she finally got the Abby doll was worth it.  You can see that she is clutching the picture in the other hand.

Ultimately, the first trial was successful.  The chart directly led to increased independence with getting dressed, and also cut out battles over what she would wear that day.  It introduced the concept of waiting for a reward, and having to work for it.  I learned what works and what doesn’t, and shifted the responsibility for some self-care over to her.  For a girl in an ABA based classroom, it was nice to see that she is capable of delayed gratification of rewards.  After several more trials, I’m hoping to introduce a kind of pyramid reward scheme, where she can choose to cash in her tokens for a smaller reward, or save them to get something bigger.  Deferred gratification is a tall order for an impulsive kid like Pudding, but an essential lesson nonetheless.

The second attempt, that was more interesting.  I’ll tell you about that next time.

Written by Spectrummy Mummy

April 18, 2011 at 6:58 am

Look, Mummy! (A pretzel in the potty).

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Earlier this summer while Spectrummy Daddy was in Afghanistan I begged requested that Grandma came to keep my sanity visit.  During that time we made Pudding this dress, with matching headband and dress for Sleeping Beauty.  It is not twee if you’re three!  It isn’t.  Shut up!

Today she put that dress on.  I couldn’t find her headband, so I left her to get dressed while I did the same for Cubby.  She managed to find it and called:

Look, Mummy!

I hurried to get there.  This whole “Look, Mummy!” thing is new to us.  One of her IEP goals is to use appropriate ways to gain an adult’s attention.  I love it.  I get to my bedroom and find her preening in front of the mirror.

Look, Mummy, I’m beautiful.

Can’t argue with that one.  Earlier in the week, though, she had done the same thing.  She appropriately engaged my interest, but it wasn’t such an appropriate sight that greeted me:

Look, Mummy!

I found her in the bathroom.  She’d just used the toilet.  I’m not going to talk numbers here, but it wasn’t pretty in there.

Look, Mummy, it’s a pretzel!  I did a pretzel in the potty!

I know, disgusting, I’m sorry.  Just felt like a little toilet humour after this [insert profanity] week!

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Written by Spectrummy Mummy

September 17, 2010 at 12:17 pm

Why?

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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

An Education

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We had Pudding’s IEP meeting on Tuesday.  IEP stands for Individualized Education Plan.  All U.S. children are eligible for special education services have an IEP that sets out measurable goals for them to attain.  Generally an IEP lasts for a year, but if you…erm…pull your child out of a placement and put them in a completely different program with a different teacher in a different school, it is necessary to do a new one.  Oh, how we like to be different!

Pudding’s first IEP was written in December right after she turned 3.  We’d been a long time without any services, so we were ready.  I’d read a lot about how I’d need to be her advocate, but I honestly didn’t think that would be necessary.  We were all on the same side, surely, in wanting what was best for Pudding.  Having deliberately moved to the area specifically for the quality Preschool Autism Class (PAC) we were initially discouraged to find that the IEP meeting was taking place at an elementary school offering only special education classes which were not autism specific.  My concerns were shot-down by the teacher asserting that the PAC classes were only for “low-functioning” children with behavioural problems.  And so proceeded a meeting where almost everything had been predetermined.  A lot was made of using a visual schedule for transitions, something I knew to be neither effective nor necessary for Pudding, who transitions well (most of the time).  When I said this, I was reminded that the teacher had vast experience with lots of children, including those with the same diagnoses.  Feeling like a “helicopter parent” I backed down.  How I wish I’d spoken up!  But I’d lost my voice back then, and it took me a while to find it.

I started to find it when we watched Pudding become more and more anxious and withdrawn.  Then we saw more regression than progress.  When I spoke to the teacher, she just kept telling me to give it time.  One time in a meeting the teacher casually referred to Pudding crying every Wednesday when it was the group OT session.  It was the first time I’d heard of her crying, and apparently it had been happening every week.  I suggested that there may be sensory issues in the gym, but the teacher did not seem to know what I was talking about.  Now I was on edge, and debating whether the social aspects of preschool were worth the cost.  I suggested she call me, or send a note home when she had a bad day, but this never happened.  Instead we got photos of Pudding looking everything from sullen to miserable.  I had to carry her in tears to the bus- the one she’d once been so excited to ride.

The culmination of our fears was when I talked to the teacher about how Pudding was possibly over-stimulated, and that was causing her to shut herself off in school.  Rather than admit this was a possibility, the teacher replied that perhaps we should “lower our expectations” when it came to Pudding.  Every professional who has come into contact with Pudding has said the opposite of this, but even had they not, how dare a teacher ever say this to a parent?  Rather than choose to lower our expectations with Pudding, we decided to raise them with regards to her education.  All children deserve to be taught by someone who will help them reach their full potential.  That potential can’t possibly be determined at 3 years of age.

One day, another child was being observed by a PAC teacher, who voiced concerns about the way Pudding seemed so withdrawn and isolated.  She felt her program would be beneficial for Pudding.  The teacher asked myself and Spectrummy Daddy to meet with her.  We took Pudding along, and watched her hug Ms. S and saw our happy, silly girl return.  Less than a week later, she was at the new school, and we haven’t looked back.

This IEP meeting was entirely different.  A negotiation where every person around the table had the sole interest in helping our child.  Ms. S talked about the special relationship she has with Pudding, and joked about coming overseas with us next year.  We agreed, and laughed, but we weren’t joking!  If it weren’t for the pesky business of her being about to be married, we would have made her sign a contract on the spot.

A good teacher looks for a way to connect with a pupil no matter how hard that might be.  They communicate whenever necessary with the parent, looking for ways to help both in and out of school.  Both giving and taking advice from those who know the child best.  They look beyond the diagnosis to see all their strengths and weaknesses, playing the strengths to their advantage and finding ways to work on the weaknesses.  A good teacher can make a world of difference to a child, whether they have special needs or not.

I lost my voice for six months this year, by keeping quiet when I needed to speak out.  I let Pudding down when she needed me, and I’m so sorry for that.  I’ll do my best to make sure that doesn’t happen again.  Now I can use my voice to say what really matters: Ms. S, you are amazing- thank you for being the teacher Pudding needs, the kind that every child deserves.

Written by Spectrummy Mummy

August 2, 2010 at 7:17 am

I want to tell you…

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“I want to tell you

my head is filled with things to say

When you’re here

all those words they seem to slip away”

Harrison, George.  “I Want to Tell You”.  Lyrics. The Beatles “Revolver” Capitol Records, 1966.

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Written by Spectrummy Mummy

July 29, 2010 at 6:55 am