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Monday, June 2, 2014


Janey started screaming tonight within seconds of getting off the school bus.  Before she was even in the house, the screams had reached a level of intensity that is near impossible to describe.  Imagine the loudest, most intense scream you've ever heard.  Imagine a horror movie scream overdone by about 200%.  Imagine the most intense noise you can imagine a person making.  Then double any of those.  That's Janey scream at its worse.

We got her in the house, and through her yells she asked for cheese, which we got for her.  Within a short time, she seemed calmed down.  Tony needed to go get William at work, and Janey wanted to go.  I went along, just in case.  We got her a Happy Meal.  All seemed okay until about half way home.  And then the screaming started again.

In a car, the scream is next to impossible to deal with.  Tony wanted to roll down the windows, but I said we shouldn't.  If someone in a neighborhood car heard her, they would be excused in thinking she was hurt in some horrible way.  But with the windows up, the sound echoes around and makes driving hellish.  However, you just want to get home as quickly as possible.  It's never easy to decide what to do.  We decided on ignoring the screams, as much as we could.  For a minute that seemed to work.  She calmed down enough to ask to hear "The Ant Go Marching" on the iPod.  We handed it to her playing that, and she listened for maybe half a minute, and then resumed the screaming.  I started my patter, partly to calm myself and Tony and William, telling her we soon would be home, we would lie down on the bed, I would sing to her if she wanted, she could rest, she could have a nice cold drink, everything would be okay....I talk in a sing-songy calm voice that often seems to quiet her.  It did a little, enough to get us home.

At home, walking in, the screaming started again.  I am thankful every day for having neighbors that understand Janey.  I can't imagine living in a neighborhood like some I've heard of, with neighbors without sympathy.  We got her inside, I lay down with her on the bed, I did my talking, and she calmed.  She is now eating like crazy---often something she does after a scream, even when she has already eaten a lot, as was the case today.

The screaming is near unbearable.  It drives us into a state that doesn't feel like living.  It feels like surviving, just barely.  Yesterday, Sunday, also featured a huge amount of screaming, and it drove me to email the special ed coordinator for Janey to see if I could change my mind and have her go to summer school, even though I previously had been quite convinced I wanted to try not having her go this summer.  But I know if every day was a screaming day during the summer, I would not make it.

I have no cheerful conclusion here.  I can say SOMETIMES it seems like the screaming spells are shorter, but they are more intense than ever.  They drain every inch of enthusiasm I have, every bit of hopefulness and energy.  I am sure they do the same for Janey.  And yet, we can't prevent them.  We can't predict them.  We can't consistently help them.  We can only live through them.  That's as positive as I'm going to get tonight.


Bethany said...

While I know you'd love to figure out the trigger or reasons for the screaming to help bring that peace and calm for Janey, I wonder if you could do something for you to take the edge out of the sound. Would you be able to use some earplugs to help lower the decibel of sound to your ears? Of course, only while you are with her to ensure her safety, but could it make her screaming session more bearable? I'm sure you would still be able to hear her but maybe it could calm you some? Maybe, in turn, she would feel that from you and calm a little. I just want to offer some help, some way, to you my friend. Wishing for peaceful days ahead. ((hugs))

Antti said...

I'm crossing my fingers for a shorter spell and wishing you all the strength and endurance!

Suzanne said...

Thank you so much to both of you! My husband Tony actually has used earplugs for the screaming on several occasions! I haven't tried them, because the actual loudness isn't what gets me as much as the emotions and the scene, but I might give them a try! It's a great point that Janey might see that we are less bothered and herself might clam down. Antti, you always give me a boost with your kind words, as do you, Bethany!

alexandrakhodlova said...

Hi Suzanne, many regards from the Czech republic. My name´s Sasa and I´m a special pedagogue in Prague´s hospital where we´re interested in authism too. I love your webside because of your great family and Janey at first. It helps me to improve my English.... You all are great, thanks a lot for sharing your experience. Sasa

Roxy Simmons said...

I'm there with you Suzanne - you are not alone - Saffron xxx