Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for June 2011

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

Paperwork

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Paperwork

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Where do I begin on paperwork?

I’ll start with last night, when we got a thick envelope in the mail containing Pudding’s occupational therapy notes from last year.  I was a little baffled, until I read the enclosed note saying that our insurance hasn’t paid them for services since last July, and if the account isn’t settled in the next month, we are responsible.  Can I mention at this point how I made Pudding leave her beloved first OT who was trained in Floortime, and had an awesome connection with our girl, to go to this one just because it was an “in-network” provider and we’d be able to avoid insurance hassles.  And even though I have to make a 42 mile round trip, and even though my girl’s progress has slowed markedly, we kept going.  For a year.  That we might have to pay for in full.

So now, weeks before moving, I had to sort through all the insurance paperwork to sort out what is going on with them, and hope we can resolve it quickly.  Because the last thing we need to do right now is pay for a year’s worth of therapy.

Or shall I talk about the ongoing saga of the paperwork of a Foreign Service child with four diagnoses?  How every time we apply to a new school, or doctor, or therapist, we have to fill out form after form requiring the same information?  How we have to apply to many schools, because the American or International Schools can’t decide if they will take her until they’ve seen the paperwork.  The school’s paperwork, not the thorough expert evaluations we’ve had done in preparation, and offer to digitally send.  No, that would be too easy.  Paperwork with question after question about what is wrong with her, and never the space for me to talk about all that is right.  So she gets turned down on the basis of paperwork that doesn’t have a hope of describing all she can offer.

Perhaps I’ll talk about my other child.  My grey-area kid who has shown some, but not all, signs of autism since I learned what to look for almost two years ago.  Who has been in a sibling study since the age of ten months that measures every aspect of development, then presents me with a report every few months.  And then evaluated for his OT and PT services through Early Intervention.  How we’re still unsure, so we took him to a Developmental Pediatrician to take a look at him.  And now he has entered the public school system.  We have masses of paperwork on the boy, but we still aren’t certain what is going on with him.  It will take time and more paperwork to figure him out, I guess.

I think I’ll just leave you with the thought that we have all this paperwork and we can’t keep it together.  Our girl gets into our filing cabinet, and drawers and folders, and it gets drawn on, or cut, or ripped.  The chance of it getting lost during moves pales into comparison with it getting destroyed on any given day at home.  The most important things, the IEPs, the reports and evaluations, get digitally scanned so we always have an electronic copy, just in case.  When we move we’ll have it with us, so we can just print it out again if necessary.

Just when we think we might have found a solution to our vulnerable paperwork, Pudding expresses an interest in computers, and I realize how simple it would be for it to all disappear.  If only I could make all the paperwork disappear for good, I’m tempted.  But then thinking about all we’d have to go through to get replacements…..you know it would take even more form-filling.

Written by Spectrummy Mummy

June 9, 2011 at 8:01 pm

Posted in Foreign Service Life

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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.

 

Written by Spectrummy Mummy

June 9, 2011 at 7:23 am

Wordless Wednesday 8 Jun 11

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How Pudding described her day in feelings...mine would be exactly the same.

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June 8, 2011 at 6:43 am

Living abroad with a special needs child

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So what I didn’t tell you when I wrote my letter to editors last week, was that it wasn’t the first time I’d tried to get magazines to address their lack of coverage of special needs issues.  From the beginning of my involvement in the exchange with Parents magazine, I started paying attention to web sites and magazines to see if they fared any better.  On the whole, they didn’t.  So every time I tried and failed to find what I was looking for, I’d contact them with my complaint, and wait for the response.

By and large, I’m still waiting.  That is the problem with being invisible, of course.  It takes a lot of us saying the same thing to get noticed.

One time I clicked from a fellow foreign service blogger’s site to Expat Arrivals, and again, I noticed there was no mention of special needs issues within the expat community.  I was unsure if I should approach them in the same way.  After all, special needs parents make up a small proportion of expats.  But then I thought about it.  In Pudding’s preschool autism class of just 6 children, one girl had been born and raised in the Middle East, and a second child (besides Pudding) is about to move overseas this summer.  A further two boys are first-generation immigrants.  These are issues affecting 5 out of 6 children in her class.  I know this area is more geographically mobile than many parts of the US, but that still makes a sizable group of children sharing similar experiences to Pudding, not to mention the many children of Foreign Service Officers who have special educational needs like our daughter.

To my surprise and delight, the editor emailed me back, and acknowledged the lack of coverage in this regard.  Then she asked for my help in providing an article about our expat experiences.  Expat life is about letting go of your expectations, and finding the enjoyment in a different way of living.  There are highs and lows, but it never gets boring.  Does that sound familiar to my fellow special needs parents?

Here is the link if you’d like to read more, and here are other posts I’ve written about my take on living the expat life.

Written by Spectrummy Mummy

June 7, 2011 at 1:15 pm

An Alternative SPD Lexicon

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I finally got around to writing a brand new post for the SPD Blogger Network.  I’ve decided to share with you what my brain thinks when I hear terms like “IEP”, “bilateral coordination”, and “motor planning.”  I’m pretty sure that most parents of kids with sensory issues will agree with my definitions.  If you have any of your own- please feel free to add them in the comments.  You can read the post here.  I guarantee you’ll laugh or your money back.*

SPD- Sometimes Pretty Demanding.
IEP – Incredibly Enervating Process.
Motor Skills – What we develop as we drive our kids from OT, or PT, or ST, school, social skills groups, doctors, and specialists with reluctant, squabbling children doing their best to distract us. Requires…
Motor Planning – bringing enough snacks/ juice/ stickers/ fidgets to keep the kids relatively calm for the journey. Inevitably leads to a…
Gross Motor – how my car looks after all the snacks/ juice/ stickers/ fidgets end up dumped out on the floor.

And while you’re there, take the time to read Spectrummy Daddy’s post and you’ll learn why he is always our superhero, even when he doesn’t realize it.  His entry is part of the Sensational Dads series this June, which you should definitely be reading.  There are some amazing posts on there.  Go on- enjoy!

*Money back offer strictly limited to return on payment for reading the post.  Oh look at that….it is free of charge!  Costs nothing but a click.

Written by Spectrummy Mummy

June 6, 2011 at 6:58 am

Turning Visible

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Dear Editors,

I don’t have a lot of time to read, but I do spend a lot of time in waiting rooms.  Too much time in waiting rooms, actually.  I see all kinds of parents like me in there.  Stay-at-home mothers and fathers, ones who go out to work, ones who work at home, parents of multiples, parents of adopted children, parents of only children, parents of lots of children, expat parents, gay parents, ones who married their childhood sweetheart, single parents, divorced and remarried parents, mixed culture and multiracial parents.  I’m a special needs mother, you see.  We’re all different.

We think differently too.  We can be a contentious group.  Sometimes we feel so passionately about something that we drown each other out.  The powerful voices which get heard are not necessarily the most accurate.  Day in, day out, we witness our children struggling, and we forget that there are other kids struggling in different ways.  We scour books, magazines, and the internet for the information we are looking for, but forget to take in another account.

So I understand, I do, that it is hard to speak to us.  I get that when you try to print information, it becomes a debate.  If you focus on one disability, it excludes others.  You choose a celebrity spokesperson for the cause, and ordinary special needs parents can’t relate, or disagree with their stance.  You find medical experts to write on the subject, and still we complain.  What does a doctor know about our lives?  The clinical analysis of the doctor and the parent’s loving description of their child are completely at odds.  And parents change too.  Perhaps what seemed to be insurmountable barriers at first later become hurdles to be leaped.

You’ll never get us to all agree about what you should be publishing, so save yourself the hassle.  Continue to ignore the issues, and save yourself the backlash.

But there is something I think we all manage to agree on: we’re invisible.  We can’t see ourselves, or our kids in the media.  It isn’t just our children who feel marginalized and excluded.  When you don’t cover special needs issues in your magazine, you send the message that we don’t matter.  It creates a barrier between parents of typically developing children and those whose children are developing differently.  If you’re the parent of a special needs child, you want other children to understand and respect those differences.

And if you’re a parent of a child who is typically developing, you want your children to understand and respect those differences.  Because now more than ever, your children will spend time with ours.  They’re in the same classrooms, playgrounds, communities, and increasingly, the same families.  We are friends and relatives, and we need to know we matter.

I urge you to dedicate a section of your magazine each week to the special needs community.  There are many different parents raising kids with all different kinds of disabilities.  Let us see them.  Hear our voices.  Present a platform that represents every parent, every reader.  If your magazine, or part of your magazine discusses parenting, it is your duty to write about all kinds of children, and all kinds of parents.

The father whose child isn’t able to sit up by herself at one year old wants to see himself when reading your magazine.  The mother who can’t manage to take a shower because her children need to be watched constantly needs to see know she isn’t on her own.  The grandparents who have never met anyone but their grandchild using a G-tube want to know there are others out there too.  The mother who doesn’t understand why her toddler can’t say mama, let her read possible reasons in your magazine so that she might discuss them with her pediatrician.

When I read your magazine, I feel ignored and invisible, but I’m lucky enough to know that I’m not alone.  You have it in your power to make all of us turn visible.  Let us see ourselves in your pages.

Yours Faithfully,

Just another special needs parent.

Written by Spectrummy Mummy

June 2, 2011 at 7:26 am

Wordless Wednesday 01 Jun 11

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Memorial Day Festival

Happy Wordless Wednesday Everyone!

Written by Spectrummy Mummy

June 1, 2011 at 7:23 am