Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘understanding

I Know

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Pudding was off school last week.  She doesn’t like being off school.  In fact, she loves being AT school, which is pretty awesome most of the time.

But not so awesome last week when she wasn’t there.  She is very anxious that we are going to stop her going to school, so she doesn’t trust that  break will only be temporary.

She wanted to see her friends, and her teachers, and seemed to be under the impression that the more she asked about them, the faster time would pass.  Which is weird, because it seemed to work the opposite for me.

“You’ll go back to school on Monday,” went my litany.  Over and over I said it.  I didn’t even think abotu what I was saying, I just repeated myself over and over.  My own echolalia.

What you might think I’d have made certain of….what any sensible or rational person would do….and absolutely what every spectrummy mummy must do is, you know, have her facts straight.

Yep.

I know.

So, still thinking that it was Back to School Day, we went through the motions of getting ready.  And even though she didn’t want to get dressed, she would, because it was for school.  And even though she didn’t want to stop playing with her brother (I know!), she would, because it was for school.

We even went outside early so there was absolutely, positively no chance of missing that school bus.  What did it matter that I hadn’t dried my hair, put on make-up or retrieved that contact lens that had slipped behind my eyeball.  There’d be loads of time after I got her on the bus.

“I want to go to school.” She reminded me after 5 minutes.

“I know.”

I really did.  The bus wasn’t technically late yet.  No need to panic.  I don’t know where the other kids are who normally get on the bus.

I want to go on the bus.”

“I know.”

Ten minutes turned into fifteen, and it was definitely time to panic.  I needed to get back inside to check, but I was a coward.  I tried suggesting that she went to the bathroom.

“No.  I want to go to school.  Only to school.”

I know.

Finally Spectrummy Daddy comes out, having checked and found that school doesn’t go back until Wednesday.  He’ll take Cubby, I’ll take Pudding to her therapy centre.  I’m already late for work, but I know that if I don’t explain things to Pudding, it will be worse.

I know.

But I’m a coward.  I run upstairs where it is already too late to fix that hair or find that contact lens or well, forget about make-up.

So Spectrummy Daddy tells her for me.  But, you know, she accepts it.  There is no meltdown.  No tears.  No refusing to go to the therapy centre.  All the things I knew would happen just…didn’t.

So I was wrong about school, and I was wrong about Pudding’s reaction.  I might think that I know her, but I’m just starting to see what she is about…and I can’t wait to know the rest.

Written by Spectrummy Mummy

October 29, 2012 at 4:43 pm

Boston (part two)

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Alysia overwhelmed by choice at Wagamama

Following on from part one.

We took a cab into the city and wandered around Quincy Market.  We wandered around exploring, then I saw a little shop that sold Christmas tree ornaments.  Now, it might seem a little strange to take Alysia (who is Jewish) to such a place in May, but I had my reasons.  A while ago I wrote a post about collecting ornaments on my travels, and how our tree now represented the alternative journey are family is taking.  So here I was, on a trip to a new place, and needed to commemorate it.  If it weren’t for autism, I wouldn’t have been there.  No matter where in the world we are, every Christmas I’m going to look at my Red Sox ornament on my tree and I’ll remember my amazing day.

It took a while for us some time to find a place for lunch.  The two of us are so used to dealing with our families’ dietary requirements, and sensory issues, we were overwhelmed by possibility.  So used to accommodating the needs of everybody else that we simply couldn’t decide for ourselves.  Eventually we settled for Wagamama, and I might have to wait some time for my husband to forgive me for doing that without him (sorry honey).

Jedi Warriors and a Stormtrooper

After we strolled around some more, when I spied a Stormtrooper.  We simply had to get our photo taken with him.  Not long afterwards, it rained heavily, so we sought refuge indoors with hot chocolate and cake: the fuel of spectrummy mummies, and mommies.  The rain hampered our sight-seeing efforts, but by the time it cleared up it was time to head over to meet The Squashed Mom, our other Hopeful Parent in Boston that day.

Try Defying Gravity with The Squashed Mom

Try Defying Gravity with The Squashed Mom

Like my other friend, Varda was just the same as in her blog, and we all settled down for a much too brief chat over a bottle of wine.  It was so great to be in the company of these ladies who just understand, without explanation.

The same Time that had made me impatient for the day was my enemy once again.  It was time to head to the airport.  It was time to say goodbye, not knowing when or if I’d see them again.  The end of a day I’ll never forget.

A flight, bus, metro journey and taxi cab ride later, and I finally arrived home.  I smiled as I saw our blue porch light shining to welcome me home, knowing that the same blue light was shining at my friend’s house.  For my friends, and all those who light up the path so we know we never walk it alone: thank you, and keep shining on.

Thank you to all the Spectrummy Daddies who let us fly.

Written by Spectrummy Mummy

May 10, 2011 at 8:27 am

A day in the life.

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Wake up, 4.45.  No Pudding, don’t be awake.  Go back to sleep, please go back to sleep.  I’m too tired. She comes into our room, gets into bed.  The day has begun. Don’t be snappy, rouse yourself, wake up! Daddy goes to work.  Cubby wakes up.  I take a shower.  Are they playing?  It is too quiet, what are they doing? They are playing together.  I get dressed, go downstairs taking the kids with me.  Today Pudding starts her trial back on rice.  I make Cream of Rice cereal.  She must be so excited, she has had the same couple of things for breakfast over and over these last few months. She doesn’t like it.  I add blueberries, vanilla, more honey.  She eats most of it.  Cubby loves it.  Get the kids washed and dressed.  Bus comes, Pudding leaves for school.

Clean up after breakfast.  Load dishwasher.  Play time with Cubby, but first must do laundry.  So much laundry, when did I last do it?  Two days ago, three?  Why is there always so much?  Oh no, no detergent! Grab Cubby and go to the store.  Outside is hot, and humid already.  85F reads the car’s temperature gauge.  I’m going to get bitten by mosquitoes. I should have put repellent on.  They love my exotic English blood and my suck-me skin. Do shopping, get detergent, time to check-out.  Cubby is missing a shoe.  He does this every time. 20 minutes later find shoe  Yes, it was under the trolley the whole time, why do you make me say it? We leave.  Temp up to 87F.  Good, we’ll be home in time for him to take a proper nap in his bed. Cubby falls asleep in the car, wakes up when we return home.

Make lunch for us both and eat.  No time to clean up.  Drive 25 minutes to school for Pudding.  91F.  Head straight to speech therapy session, driving another 25 minutes through ritziest neighbourhoods.  I want to live in a mansion like this.  I want to be stinking rich.  What do they do, these people, to get so rich? Arrive 20 minutes early.  Wait in car with a/c on.  Temperature gauge now reads 95F.  Cubby is asleep.  Try to entertain Pudding, but she just asks to get out the entire time.  Can’t get out without waking him up.  He needs his sleep, never gets a proper nap, my fault.  Oh, hello Guilt, my old friend, how are you?  Why must she keep asking to get out after I said no?  She doesn’t understand, so I have to be Understanding.  Be Patient.

Time to go in.  Leave her there and return to car.  Cubby wakes up.  It is hot, temperature gauge up to 97F.  Drive to get a drink.  Cubby enjoys being free of the car seat.  After 10 minutes, time to collect her.  He screams at being out back in the car, now 97F.  Guilt, Guilt, Guilt. Pudding has had a good session, lots of talking, great social interaction. Thank goodness, it makes this drive in the heat worth it.  She tries so hard, it must be hard after a morning at school.  Must be Empathetic, remember to be Patient. Get back in the car, 98F.

Driving on highway, Pudding speaks: “I want to go potty”.  Still 15 minutes from home, she can’t hold it.  Cubby whining.  Come off highway, drive to a strip mall.  “I want to go potty.  I want to go potty.” Over and over.  I know, I get it, I’m trying!  Why are there so few parking spaces?  This is America, everybody drives everywhere, make more parking spaces! Find parking space.  Enter fast food restaurant, head to bathroom.  There is a queue, 3 women in front of us.  There is a hand dryer.  The low-frequency sound drives Pudding insane.  Cubby is squirming to get down.

Pudding: I want to go potty, I want a hug.  Want mummy to hug.

Me: I know honey, I’m sorry- we have to wait, these ladies are in front of us.  Please, for the love of God, women, let us go in front of you.

Nobody lets us go in front.  Someone comes out, washes their hands, uses hand dryer.  Pudding squeals, women turn and look disapprovingly.

Me: I know sweetheart, that sound really hurts your ears, I know, I’m sorry. 

Can one of you please have a little empathy?  I know she looks like she is older than she is, like she should be able to hold it.  I know you don’t get that a hand dryer and flickering florescent lights drive her crazy.  You don’t have to get it, you don’t have to live it, just let us go ahead of you and my screaming kids will be out of your way.

We wait our turn.  The next two ladies use the hand dryer too.  A plague on both your houses.  No, be Understanding.  They can’t tell just by looking at her, I should be brave and tell them she has autism.  Yeah, well, I would if  I wasn’t trying to control a wailing girl, and a toddler hell-bent on touching every filthy surface in here.  Today isn’t about raising awareness, it is about just getting through an ordinary day.

We leave.  A big, black SUV is stalking our parking space.  I shake my head at the driver, he doesn’t move.  There is no way we’ll be out of here quickly dude, just move on. Put Cubby in first, he screams.    I don’t want to put you in either baby, I know.  Just lets get home, please. Black SUV still waiting.  Look at the Autism Awareness magnet.  Look at the exhausted mother with the two little kids, look and be Patient, and Understanding, I implore you. I try to soothe Cubby, while keeping a grip on Pudding’s hand lest she runs off.  Black SUV beeps his horn, Pudding screams and falls to the ground.  She was already on the brink, but the too loud noise from the too close car sends her over.  She is shaking, her heart pounding.  I want to hit you.  I want to hurt you like you just hurt my baby.  I want to smash the windows on your car.  I want to scream and swear, and I can’t make a sound apart from to comfort her, anything else would just make it worse. Cubby is crying, Pudding is crying.  I pull her into the front seat and rock her.  I’m going to sit here as long as it takes, this car isn’t going anywhere.  Black SUV rolls down his window to yell ‘Bitch’ at me before driving off.  Pudding calms down.  I put her in the car and we drive home.  Temperature gauge hits 100F.  I’m done.

I can’t change Pudding.  She has a neurological difference that can’t be altered.  I wouldn’t change her if I could, I’d just make this world easier on her.  I need other people to change instead.  I need the women in the bathroom to change, I need the man in the black SUV to change.  I need them to be Patient and Understanding and Empathetic.  I don’t need you to feel Guilt, I’ve got that covered. You’re here, you’re doing your bit.  But can you just tell those people for me?  Because I’m done, for today.

Written by Spectrummy Mummy

August 11, 2010 at 1:00 am