Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘guilt

American Guilt

with 12 comments

Last night’s Spectrummy Mummy Facebook page status:

(Medical procedure + new special interest + trip to the mall) – spare cash = guilt to the power of 10. My equation for today.

We have another new interest.  I’ve quit calling them special, my Pudding is a little too easy in her consumer affections these days.  A few weeks ago we were at our local mall, when I noticed a large crowd gathered in front of a new shop.  We moseyed on by and saw that there was a new American Girl store.  There were little girls everywhere with multiple red boxes.  Something tells me that our part of America is not quite hit so hard by these economic times.  For those unfamiliar, American Girl is a shop that sells ultra-expensive dolls and matching clothes and accessories for girls.  We looked through the window, and Pudding was enthralled, and quickly demanded to go inside.  The place was so busy, that there was a ticket system to gain entry.  Even if we were prepared to wait hours to get inside, the place was still crowded.  I promised her we’d go in another time.

One day I pulled up the web site, and she quickly discovered a favourite, and named her “Kelly” (Pudding likes to give her own names to things she likes).  Since then, at least once a day, she has asked me to show her pictures of Kelly.  I heard that our store also has a bistro and girls can dine with their doll, and I knew how much Pudding would love it.  I talked the hubby into it, and found the earliest reservation we could make was for the last week we were here.  Perfect- one last treat for our American girl.

Yesterday we had to take Pudding to have an EKG to check that everything was fine with her heart (it is) due to her new medication.  She didn’t want to go.  She has seen enough doctors lately, I don’t blame her.  Enter the guilt, because of course, it isn’t fair that this is her life.  It especially isn’t fair that this is her life for what little time she has left of being an authentic American girl.  Armed with stickers and lollipops, Pudding did great, in fact, she eventually liked it so much there she didn’t want to leave.  We decided to do something nice for her, but at 99F, it was too hot to do anything outdoors.  We made our way to the mall.  Somehow, this translated to going to the American Girl store.

Oh I know, what you’re thinking- we got her the doll, right?  Well, we have decided to get her the doll she likes.  But it is expensive, and her birthday isn’t until December.  We need to get the money together for it, but also it has to be seen as special for her.  She can’t just get something because she wants it.  We’d planned on buying her one for when she goes there for her meal.  That week will see her packing up all her toys for a few months, and the Kelly doll will give her something to focus on for the flight.

We went into the store, and it was Pudding heaven: dolls and pink everywhere.  She was very enamoured with a doll’s iron and ironing board, which bemused me- ironing is man’s work in our house, she has never seen me do that particular task.  Of course, she wanted everything and the struggle was keeping her little fingers out of the boxes.  We took her to see the restaurant where we’d be taking her in two weeks.  Naturally, she wanted in.  I tried to explain that we could go there next time, but I’m fairly certain she wasn’t listening.  She had her own agenda.

We made our way downstairs and she found the Kelly doll.  Immediately she hugged it, planted kisses all over the face, and smoothed the hair.  I don’t think I’ve ever noticed a reaction to something that was at once so typical and so Pudding.  She wanted that doll like any other 4 year-old, but she loved it like only Pudding can.  She is the very definition of all or nothing, my girl.

Spectrummy Daddy and I looked at each other helplessly.  Moments later Cubby decided he needed a boy doll too.  Where was a doting grandparent when you needed them?  We had to get out of there.  I tried reason to get her to put the doll back, but Pudding loves beyond reason.  Eventually with more guilt than it is humanly possible to feel, I had to prise it from her hands, place it out of reach, and carry the screaming Pudding out.  All eyes were on us, of course, but I doubt I’m the only mother to have carried a brokenhearted little girl out of there without a red box.

As we neared the doors, a sales assistant approached with a sticker.  Pudding was incandescent with rage, thrust the sticker back at the lady and between sobs forced out:

I-don’t-want-a-sticker-I-want-Kelly-doll.

…which was just awesome pronouns, especially when distressed!  I’m sure the lady was confused: there are many dolls with names, but none of those are Kelly.  Once we were safely out, her newly motivated language skills were in full force.

“I don’t want to go to the playground, I want to go back to the Kelly doll.  I want Mummy to get her.  Mummy, please get her.”

Each polite, appropriate, functional request an extra little stab of guilt.  Eventually the tears stopped, and I talked to her about earning the doll with her tokens.  She seemed to get it.  The chart had worked before in getting what she wanted.  She began to cooperate, and after some time in the playground, we left for home.

This morning we began the day with her usual insistence that she stay home with me instead of going to school for the morning.  Later she told me she had to go to the mall, for Kelly.  I’ve got to make a calendar with a picture of the Kelly doll.  Two weeks is going to be exhausting when time is measured in guilt minutes.  And then of course, I feel guilty for Cubby.  More guilt dollars.  There is going to be a point where I’ll be the first ever stay-at-home autism mother who is forced to return to work because of the guilt.

American Guilt, at a mall near you.

Written by Spectrummy Mummy

July 12, 2011 at 7:39 am

The Package

with 17 comments

The Package of forms from the hospital is just as heavy as last time.  Its bulk doesn’t comfort me, though they are blank, I’m scared to complete them.  I quickly hide them in a drawer.  It loiters in the drawer, unopened, for three months.  I know it is there, but I will myself to ignore it.  Finally, one week before the appointment, I have to open it, can put it off no longer.  Lucky that I did, there are forms for her teacher to complete, and there is only one day remaining before Spring Break.  I quickly tuck the rest of them away.

We’ve completed these same forms before.  That time there was a sense of urgency.  In my desperation to understand, I pushed away the overwhelming thought of what my answers would mean, and just responded to the questions posed about my girl’s development.  Just questions, they don’t define her.  Then those forms were evaluated, and more evaluations took place, and a label came which still doesn’t define her, but altered the course of our lives nonetheless.  That label brought answers, and understanding.  It brought recommendations for therapies that we just couldn’t afford.

It also gave us a new starting point.  A ground zero from which to chart her progress.  And this is the part that scares me.   The first time around, we compared her development with her peers, now we compare her to her younger self.  Yes, there has been progress, but has there been 20 months of progress?  In our game of snakes and ladders, are we moving forward?  I can’t help but reflect that had we been able to follow their guidance, there would have been much more of that elusive progress.  The feeling as familiar as the package of forms: Guilt.

Guilt is debilitating.  It leaves me prone.  I must fight it, because she needs me to keep moving forward so that she can too.  We do the best that we can, with what we have.  That maxim motivates me.   My armor.  I size up my enemy again: Guilt.  Nothing compared to the opponents my girl faces every day.  The best that I can do right now, is simply to fill out a few forms.  It isn’t easy for me, but like my girl, I try my best.  Time to open that drawer.

I did open that drawer on Tuesday.  There was no filling out the forms though.  Every time my attention was elsewhere, a pair of supervillains intent on destroying the house, my patience, each other, the world took over.  Eventually when peace was restored with bedtime, I opened up the envelope again, and got to work.  I don’t remember what answers I gave the first time around, but I suspect many things remain the same.

But there are so many things those forms don’t measure.  A burgeoning sibling relationship, the ability to work out what she needs even when her system is threatened, the capacity to make friends, flexibility in the face of disappointment.  So much more than I’d have hoped for the last time.  I just need to remember that for today.  I’ve been trying since the early hours of the morning.  I have the same worry and guilt as ever, but now mixed with pride and hope.  The heady cocktail of a Spectrummy Mummy doing the best I can, with everything I have.  Just like any other day.

Written by Spectrummy Mummy

April 21, 2011 at 5:38 am

A day in the life.

with 4 comments

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