dinner time

-

It’s dinner time.

I try to coax her into the kitchen.

She takes a few steps, then bounces off an invisible wall.

Have you ever seen a firefighter repelled by overwhelming heat? It may be invisible; but it’s impenetrable. 

She reels backward into the office.

I offer her my hand again. I promise to show her that the cooking is all done. That it’s OK to walk into the kitchen now. I tell her that we will look at the stove together before we walk all the way in.

“There’s nothing on the stove, baby,” I say. “I promise.”

She looks leery.

“No pan?” She asks.

“No pan,” I say again, “I promise. Let’s go look together. I’ll be right here with you.”

Her body is rigid. She’s not moving.

“No pots?” she asks.

“No pots,” I say.

“There won’t be any noises,” she says.

“No baby, no noises,” I promise. “Let’s go see.”

Together, we take a tiny step forward. I’m hopeful.

Then not.

She drops my hand and bolts in the other direction. She runs in a tight circle – into the hallway, around the corner, into the living room. and back through the office door. She is covering her ears with her hands. She’s no longer talking, but yelling.

“NO NOISES! THERE WON’T BE ANY NOISES!’

God damn it. 

Academic challenges? Bring ‘em on, Bucko. Difficulty with diet? Self care? Social Pragmatics? Transitions? We’ll figure em out. Every one of them.

But this.

I can’t ‘fix’ this.

I can’t make it OK.

I want to scream with her.

I want to know why.

Why my girl.

Why anyone’s girl – anyone’s child needs to hurt like this.

Why?

No, this isn’t an option. Not now. 

Deep breath. 

I tell her again. “The cooking is all done, Brooke. It’s time to eat now. It’s OK. No noises. I promise.”

A broken record.

We’re stuck in a loop. 

I offer to pick her up, to carry her in. “I’ve got you,” I say. “You’re safe,” I tell her.

It’s hollow. I can tell her until I’m blue in the face that she is safe – I can try my damndest to SHOW her – to PROVE to her – that she is safe, but if I can’t make her FEEL safe, it’s all for naught.

That difference is monumental once adrenaline has drowned reason. 

She comes toward me ever so slightly, then stops again.

She’s shaking.

-

Eventually I will coax her past the stove.

We will make it – together – to the table.

We will both feel like we’ve climbed a mountain.

-

Later, I will sit down at the laptop, open it to Diary’s Facebook page, and write.

Please God show me how to take away my baby’s fear. We can get through anything – we can, but damn, it’s the %@&#ing fear that hurts the most.

And I will close my eyes.

And pray.

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38 thoughts on “dinner time

  1. I wonder why the noise scares her – my son says the same thing (not to the same extreme) – it’s like there are so many sounds when cooking with the spitting and the splattering and I wonder if their brain goes to the consequences of it hitting them or there are so many sounds that it overwhelms the sound system. It’s one that I’d like someone who has autism to explain, if they felt even remotely the same.

    • Wattle,

      I don’t know if it’s for the same reasons, but for Brooke the fear stems from a couple of times over the years that our smoke alarm was triggered by smoke from the stove. So she’s not really afraid of the cooking noises per se, but what she thinks is a likely consequence of them. I hope that helps.

      J

      • Ok, so ours is different because the sound of the fire alarm just signals dinner for my son :)
        However a friend’s son who had crippling anxiety attacks was able to control it through Cognitive Behavioural Therapy – done when there was no anxiety and he was relaxed and working through the scenarios of what might happen (what is the worst case scenario, what she can do) and what to do when the situation arose. This might not work at the moment but worth a try but as other language and understanding grows, it might be helpful.

    • Yeah, CBT can be a great tool, but it unfortunately relies heavily on language, emotional self-awareness and conceptual understanding. *sigh* hopefully someday. ;)

      • Thought so, hopefully with the leaps and bounds she did in 2011 that this is one of the things that is changed sooner rather than later.
        Is it all food or just particular types of food you cook? Could she draw some of her signs about eg sizzling steak or what about on youtube is there any of her characters eating that food or youtube videos of cooking those foods – I wonder if they would elicit the same reaction and if not, could be used to show her that the characters house doesn’t spontaneously combust.
        By the way, I hope your smoke alarm is still connected despite the distress because there have been too many fires this year in Australia where a smoke alarm would have saved lives – note there are smoke alarms that don’t go off on smoke primarily, they use some other sensor and are therefore less likely to go off on cooking smoke – when we changed ours, it made a dramatic difference, it really didn’t go off every day.

  2. It is NOT all for naught. One day the fear will ebb. She will trust you that it won’t be there. She will realize when mama says its all clear it is. I know because I’ve been there. My son is so terrified of a logo it has parallyzed him to go anywhere with a tv for fear it will appear. Over time we have worked with it and he trusts us. He’s learned strategies to deal with it. I’m not saying he’s over it, but he can deal. He can function around it. Have you tried something like an iPod with her favorite music to cover up the (potential) noises and then when she sees she can take it off?

  3. I could have written this myself! My so-called “high functioning” baby who will probably lose a diagnosis due to the new DSM criteria, who will not come downstairs without saying “mom, are you cooking.” If I forget that I hadn’t turned the oven off, he runs screaming as if someone has just opened fire on him. Something so simple as preparing dinner in our house can easily turn into a war zone. I feel the same way as you. If there was one thing I could fix among all the challenges it would be the dysfunctional marriage that happens when sensory overload meets anxiety.

  4. It’s like a sucker punch to the gut every time. I want so badly to fix it for her, for you. I can’t. All I can do is tell you how much I understand this and how much you are both loved and carried in my heart and prayers. xo

  5. It is not all for naught. She will learn to trust you. She will learn to deal with it little by little. One day you’ll see a slight change. You will keep working on it and it will change. it will. My son has a fear similar to this of a LOGO. He fears he’ll see it on a tv commercial and go into a meltdown like only us parents have seen. He has learned to trust us when it’s “safe”. he has learned strategies and FINALLY that mute and not looking helps (even though he is seeing it in his head and that’s just as scary), but it’s improved. A LOT. Have you by chance tried an ipod with her favorite songs (songs that always make her happy), to put on while you show her its safe? It can cover potential sound threats and when she decides its safe she can take it off for dinner?

  6. I’m at the complete opposite direction with fear. He will walk up to the stove when I’m cooking, and try to touch the pots, he will walk on the edge of the basement stairs, he will walk out into the dark, and it scares me to death that he might get hurt, I can’t even take a shower or pee in peace untill he is asleep, and still can’t sleep sounly afraid he might get out of bed and get hurt. Still, I can’t imagine my baby feeling that fear I’m feeling. I pray that Brook will overcome it soon!! Hugs!!

  7. It is not all for naught! Slowly but surely she will trust you and she will be able to deal just a little bit better. Your love and perserverence will help her learn to trust. My son has a parallyzing fear of a logo! He wouldn’t go into any place that had a tv on (hard these days). Slowly but surely he has learned to trust us when we talked him through it and taught his strategies to deal with it. Have you tried an Ipod with her favorite (happy!) songs on it. It would have cover up potential noise threats and then she could take it off when she gets to the table. It might be an effective tool. We now use it and bring it to noisy places. He takes it off when he feels comfortable and feels it is quiet enough. Just a thought. She needs some sort of feeling of power over it.

  8. Big hugs to you both! Our poor little loves struggles are heartbreaking. I hope you got to the table or had a picnic in a quiet room.

  9. I’m sure this is something you’ve already tried, or for some reason, don’t want to try, but what about earphones. Bose has some great ones (pretty expensive), that you could probably hand her before walking in. She could remove them when she sees that the pots and pans are put away, but they could simply be something to get her into the room, and she could use them when she’s out and about too.
    Although, they provide such a wonderful silence, she may not WANT to remove them. Then you’ve got a problem, but perhaps if you can make her realize they’re only for “special times,” when she’s feeling “as scared as the whole word” (a phrase one of my students used), you’ll have a great tool for both of you.

  10. So heartbreaking to read, I can’t imagine how heartbreaking it is to be going through it. I pray that Brooke’s fear will subside. I pray for all of our kids who suffer from anxiety and fear. It’s the demon we can’t see and it’s just so hard to fight. But we will. We will.

  11. would earplugs be an option for you? some kids (and adults) use them for auditory sensitivities with great success. I wish you luck!

  12. Jess my son had an auditory sensitivity to the extreme over coughing and sneezing. Couldn’t handle music. At all. Couldn’t function at circle time at school with songs. It controlled our lives. We did auditory integration therapy (Berard AIT) over the summer and it made an amazing difference. Those sensitivities are gone. GONE. If you haven’t looked into it please do. For me it was priceless and helped him so much. Hugs as you journey through to help Brooke.

  13. My son has similar fears…also because of prior fire alarm noise. To him and his uber-sensitive ears, I am sure it was a pain so overwhelming that the mere thought of it scares him to his core. That’s why I can’t bake anymore…if I start taking stuff out, he goes into hyperdrive with anxiety, stims, and elopement. I am so sorry that Brooke suffers..it is so hard when all we want them to feel is safe in their own home….hugs for you both.

  14. Omg….that poor baby! No one should have to have such paralizing fear of walking into
    A room! It is heartbreaking..prayers for you & Brooke that it gets better for her a little each day. My girl still can’t tell me (though she is no longer considered non-verbal) what the fears and nervousness are about. I see it in he eyes and in her body but It is still a guessing game. It is so hard.

  15. SO right there with you, Jess. The fear. The noises. The kitchen. We’re working on the very same thing here. The blender (the freaking blender!!!! Read more here: http://aimeevelazquez.wordpress.com/2011/03/25/blending-up-fear/) continues to be that kitchen item that he can’t be near. We have worked through the electric mixer, the vaccuum, the food processor etc. etc. etc., but there’s still the blender. Little itty-bitty teeny-tiny steps of progress have been made (thank you Youtube and the “Will it blend?”series that I think allowed my little one to once again enter the kitchen), but forget using a blender at home with Jonas around. We actually plan our blending around our day when we have to use hte blender, which is pretty crazy but is our reality. *heavy sigh* and lots of (hugs).

  16. Jess-
    Our almost 6 year old daughter “K” with HFA reacts very much like Brooke to noise (or even the prospect of it). She has a younger sister whose screams drive her to tears and cause her to bolt immediately. We have found that earphones (you know like the big ones that pilots use, but kid-sized and in a lovely pink color) are a godsend. Even when the noise isn’t present, it provides her enough confidence that the sudden, loud painful sound won’t happen that she’s able to tolerate dinner. Don’t know if this will help at all, but just wanted to give my 2 cents.

  17. Had to come back to add this: I know you already use a number of techniques for Brooke to deal with the day to day noises. I completely get that it’s the anticipatory anxiety which she is powerless to control. It’s like another friend said to me today about her *own* anxiety, “I can throw all the logic at it that I want, but it’s not helping.” THOSE are the times which are the absolute hardest; harder still when it’s your child and you just want to make it better.

    And sometimes, just knowing you are heard and understood means more than all the helpful advice in the world. I’ve got nothing to offer except that. And love. xo

  18. I feel your pain, but I also offer hope. My son just turned 18 and over the past 6-9 months has matured in an amazing way. The kid who was afraid of dark rides and uncertainty became the young man who was eager and enjoying a ride recently on Space Mountain at Disneyland. A ride he has pulled me away from and refused to even walk near for the last 8-9 years.

  19. I can relate to what you write. My daughter is afraid of her great grandmother’s oxygen tube. We have no idea why, she was fine with it and then one day >poof< she's deathly afraid of it. It's been a whole year since we've seen her. She keeps asking to see our daughter. My dad gets upset that we don't visit his mom. They don't get it, no matter how much we explain. And I feel like crap each time this issue comes up. I wish we could just get over this hump already.

    Hang in there. One day, one day this will be behind you.

  20. My ex-wife follows your blog and sent me the link to it. She has does some editing/proofreading for me on a recently completed a video-based training series that addresses everyday challenges faced by parents of children with autism. Titles include: Overcoming Irrational Fears, Getting Kids to Eat, Expanding Interests…there are eight in all. Below is a link where you and your readership can view the video module Overcoming Fears:

    http://vimeopro.com/tomcaffrey/video-modules The password is: caffrey (lower case).

    One of the featured case studies in this module is a child overcoming his fear of a smoke alarm. It’s compelling video; I hope it helps your child the way it helped David.

    Tom

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