Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for June 2011

Idealist and Realist

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When Pudding was born, she was pure and perfect.  I was determined to keep her that way.  I would only nurse her, no chemical formula for my baby.  No pacifier, my baby wouldn’t have nipple confusion.  When she was ready, I fed her the organic, mostly locally-grown vegetarian diet that I ate, cooking all her meals from scratch.  She wore cloth diapers, and I used non-toxic cleaning products.  I’d encourage her to play with handmade wooden toys, and not allow her in the presence of TV or electronics.  I’d expose her to foreign languages and museums and art galleries.  She would always be perfect.

I was the Idealist Mother.  The Green Goddess of parenthood.  I never said it out loud, but I knew in return I’d have a perfect child.  I had no problem with other people doing those things with their children, but it wasn’t good enough for mine.  It was smug, it was judgmental, it is how I was.  Nothing could go wrong, if I did everything right.

But right didn’t seem to work.

The first thing I caved on was the pacifier.  There was no nipple confusion here, she knew exactly what they were, and needed them in her mouth the entire time.  Or she’d scream.  The entire time.  I was ashamed, but the pacifier stopped it.  She needed it, and I gave it to her.

I kept nursing her, but her appetite was insatiable, and it left me drained.  I finally got over myself, and tried formula, and the instant she put the bottle to her lips, she was allergic.  How could it be?  I’d done everything right!  Well, except for fixing her genetic predisposition.  My first taste of not having control.  I didn’t like it.

And then I was on a slope.

Once I started making food around her allergies, I lost my passion for cooking.  For a while I carried on making different meals for everybody, but then came the second pregnancy with complications.  When I began to crave chicken, I gave in and ate some for the first time in 10 years.  Then I discovered how easy it was to make one meal everyone could eat- there was no going back.  With more allergies, and a picky eater in Cubby, there are days I wish I could just get a break from the preparation and cooking and get fast food.  The old me would be horrified.

Though Pudding wore cloth diapers until she was potty trained, this Green Goddess failed with the second child.  When I observed that Pudding was more attracted to noisy cause-and-effect toys, we bought more and more of them.  Going to museums became difficult, a much rarer event.

And the languages.  I stopped trying to teach her French and Spanish.  She’d picked up a few phrases, and a couple of words in Luxembourgish and German, but she always using them in the exact same context.  Eventually I realized she was doing the same thing with English.  Our friends who allowed TV had kids who had better language skills than she did.  I eased up on that too.  When I saw how technology could help my child to learn, I embraced it.

Eventually this week I came to the decision to do something I vowed I’d never do- even after Pudding was diagnosed with an autism spectrum disorder- a medication trial for her ADHD and sleep disorder.  Putting something chemical into my pure, perfect baby would have been inconceivable to me a few years ago.  It is hard to let go of the idea that I’m failing her when I don’t match up to the ideals I’ve always held.  But those ideals just haven’t been able to deal with the reality of parenting.  Just like I require my kids to be more and more flexible, I’ve had to bend too.  And I’m certain that there’ll be more bending to come with time, as those ideals get left further behind, and my care becomes more pragmatic.

Perhaps not.

One thing that Realist and Idealist Mother have in common is that she wants the best for her kids.  She just finds different ways now.  Another thing?  My babies are still perfect in my eyes.  I’ll never change that much.  The Idealist in me keeps looking for ways to make this world a better place for my kids to live in, the Realist is helping them adapt instead.  I’m hoping that the two sides keep each other in balance, and show my kids that things are never black and white.  There is always another way to look at things.

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Written by Spectrummy Mummy

June 16, 2011 at 7:51 am

Wordless Wednesday 15 Jun 11

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When pouring water is combined with victimizing her (willing) brother, a happy Pudding ensues.

Written by Spectrummy Mummy

June 15, 2011 at 7:19 am

I don’t want to

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I don’t want to write about what is happening today.

I don’t want to say that I am taking Pudding to a psychiatrist.  I never wanted to say that.

I don’t want to return to the place she was first diagnosed, then acquired more diagnoses, one for every year of her life.

I don’t want to see the receptionist with her brittle smile.  I don’t want her to hand me more forms.

I don’t want to hand over another piece of my child’s care to a stranger.  I don’t want to admit that she needs more help than we have been giving her.

I don’t want to change her.  I don’t want to hurt her.

I don’t want to cry.  I don’t want to go.

But I will.

Because I promised her I’d always be there, and I’d do anything for her.  Even when I don’t want to.

Written by Spectrummy Mummy

June 14, 2011 at 12:02 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

Paperwork

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Paperwork

Image via Wikipedia

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.

Written by Spectrummy Mummy

June 8, 2011 at 6:43 am