Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘autism awareness

Parents Like Us

with 13 comments

My friend Alysia emailed me with a call to action.  One of her friends had received the April edition of Parents magazine, and was dismayed to find there was no coverage of autism.  You see, next month is OUR month.  Autism Awareness month.  Some parents called for action, and Parents initially responded that there was going to be an article about bed tents and 2 online posts.  I have a bed tent sitting in a closet that couldn’t ease my girl’s anxiety at night.  I write online posts every day to raise awareness, understanding and acceptance.  This was not good enough.  Why can’t we open a magazine about parenting and find parents like us there?

I joined in the voices calling for more:

I join in with all the other PARENTS here who are appalled at your condescending and dismissive attitude.  As a mother of a child on the spectrum, I’m shocked that you were unable to dedicate a single issue to raise awareness this month.  It isn’t just our kids who feel marginalized and excluded.  We’re parents too, we deserve acknowledgment.  In April, we need Awareness.

They listened to us.  When we speak together, the world has to listen.

Here is their response:

We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email FacebookSupport@meredith.com with the following information: 

• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)

We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.

Please, if you have a story to tell, do share it.  Show them that we are here, not just Parents the magazine, but all the parents who are struggling to understand their child’s strange behavior.  All the parents who feel alone.  Let us make sure that neither they nor their children feel marginalized or excluded.  It is too late for the print edition for April this year, but I know that together we can make ourselves heard for next year.  Let us show them that we are here.

They are parents like us.

Written by Spectrummy Mummy

March 23, 2011 at 12:13 pm

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