the storm

*

Oppose not rage while rage is in its force, but give it way a while and let it waste.

~ William Shakespeare

*

Luau had put himself in a bind. He’d volunteered to chaperone Katie’s field trip (starts with ‘A’, rhymes with Barboretum) and without realizing the overlap, he’d also committed to help with a Halloween themed project in Brooke’s classroom at the exact same time. I was thrilled for the excuse to bail him out. Oh dear, what shall I do? Looks like I may just HAVE to sneak out of work early that day and help out. *wink, wink, sigh *

I couldn’t have been happier as I set up shop with two other moms in Brooke’s classroom. We were each charged with leading a Pumpkin Math station.

One was an observation station where the children observed various types of pumpkins and gourds and then recorded their observations. One (mine) was a counting station where the kids took a stab at estimating how many seeds had come out of the pumpkin and then sorted them into groups of ten and counted them out together. We then compared their estimates to the actual results and tallied up how many friends had guessed too high, too low and just right. The third was a weighing station where they estimated the pumpkin’s weight and compared it to other objects around the room.

We set up our individual stations while the kids were out at recess and I was nearly vibrating with excitement by the time they came back in.

The kids were adorable. They were chatty and friendly and silly and sneaky and eager to touch and feel and smell and explore everything around them. They guessed everything from 100 to 2000 seeds and grew wide eyed as we counted them out. Every one of them wanted to reach into the pumpkin, eager to dig right into what they were learning. It was heady stuff, watching them drink it all in.

Brooke’s group came over in the second rotation. I watched her with her aide, our spectacular Miss N. I started out just as I had with the last group, by showing them the pumpkin and asking them what they thought had been inside of it. Kids shouted answers over each other and we sorted through the noise as I called on one child at a time. Brooke fidgeted and looked around. I asked the kids if they knew what ‘estimate’ means. Two little hands shot up in the air. I looked over at Brooke. She was playing with the counting cards in front of her. I called on one little boy who looked like he might just burst if he didn’t get to say, ‘A really good guess!’ Miss N kept Brooke on track as we moved along and the kids wrote their estimates on their worksheets.

Things were moving fast. I was under the gun to get through the lesson in the alloted twenty minutes. I knew Brooke would need help – a lot of help –  following what was going on around her, but this time it wasn’t my job. It was all on Miss N. She kept her moving, feeding her numbers and helping her figure out what to write on her page.

On the last rotation, the teacher came over to relieve me so that I could follow Brooke’s group. I caught up to them at the observation table where Brooke was sitting in front of a miniature pumpkin. Miss N was prompting her with questions. “Brooke, what shape is the pumpkin?” she asked.

Brooke answered, “Orange.”

“It is orange, Brooke,” said Miss N patiently. “That’s its color. Can you tell me what SHAPE it is?”

I drifted into some of the other bits and pieces of conversation around the table.

“What’s that word for figuring out the size of something round? Excuse me, Ms F, do you know if it’s the circumference or the radius that tells you how big it is? Are we going to measure these? Do we have rulers?”

“Mine is a funny shape. It looks like it’s having a baby! Tee hee!”

“This one’s not a pumpkin. It’s a squash. Or is it a gourd? Um, is this a gourd? I have to write that down. How do you spell gourd?”

And then I focused back in on my girl.

“Brooke, can you tell me what shape it is?”

“A circle.”

“Good job! Let’s write that down now.”

She set to writing the letters, one at a time. Miss N had set up her notebook in front of her like an easel to make it easier to write. She began to write her first letter – a ‘T”. She started in the wrong spot and Miss N gently pointed out where she needed to be, drawing a smiley face on the page as a guide. She handed her a pink eraser and Brooke erased her ‘T”. Over and over and over again, Brooke would write, erase and write again. Miss N would let her go for a while, allowing her to get the thought out, but eventually she’d have to remind her what she needed to do. Finally – FINALLY – she had a five word sentence on the page.

‘The pumpkin is a circle.”

She fussed and said that she was done. Hell, I’d be done too. Miss N calmly said that she needed to write just one more thing about the pumpkin. “What color is the pumpkin, Brooke?”

The kids around us were still chattering excitedly about their gourds and squashes.

“This one’s really bumpy! Check it out; it’s like it has a diseeeeeease! Ha! Ha! Ha!”

“It’s orange.”

“That’s right. Good job, Brooke. So let’s write that down.”

Brooke looked exhausted.

After stealing a good long hug, I left with the other moms. I met Luau outside and we scurried off to enjoy a couple of precious hours before pick-up. On impulse, we decided to head into town for lunch.

We sat down in a lovely little Italian place off the town green. I smoothed the white cotton tablecloth as I ordered a very grown-up sounding meal. I took a deep breath and sat back in my chair. And then it happened.

In the middle of the day, in a particularly civilized little dining room surrounded by older couples and ladies-who-lunch, the storm came. I didn’t recognize it at first. It’s been a long time since it’s been around. But it was undeniable. It wasn’t any of the usual suspects. It wasn’t sadness. It wasn’t frustration or heaviness or weariness. It wasn’t anxiety or even fear.

It was rage.

Suddenly and without warning, I was choking on the silent scream of impotent rage. For a fraction of a second, I couldn’t see. The room went dark and the air disappeared. I couldn’t move. I had this strange thought afterwards – that I’d wanted to flip the table. Just stand up and turn it over. To cause upheaval, commotion, noise. But as in a slow motion nightmare, I was paralyzed.

Just as quickly as it had come, it passed. The only remnants were the tears on my face and the tension in every muscle in my body. I felt like I’d been in a car wreck.

I get sad. I do. I get sad and I get tired. I get frustrated and weary. But until that day, I guess I hadn’t gotten angry in a really long time. That day, I was ANGRY.

I was ANGRY that my girl has to work so God damned hard to do what seems to come so easily for everyone else. I was ANGRY that she is trying to figure out the difference between a color and a shape when everyone around her is talking about radius and circumference. I was ANGRY that she has to write and erase and write and erase to get one God damned word on a page. I was ANGRY that she has to puzzle through every single interaction that is somehow so natural for everyone around her. I was ANGRY that she has to struggle to keep up with a world whose pace and focus are so completely different from hers. I was ANGRY that every little thing is so God damned hard for her.

Why my girl?

Why my baby?

Why anyone’s baby?

Just why?

The clouds passed that day, but they’re still close. And I can’t get past this sinking feeling that they’re not really gone. No – if I had to put money on it, I’d say I’m standing smack in the eye of the storm.

51 thoughts on “the storm

  1. Oh Jess, I so understand! Can I stand with you while we weather this storm together? {hugs} :wipes tears rolling down face:

  2. oh yeah…that’s where you are, all right. find your anchor! your “grounded” someone(s) or something(s)…don’t let go jess. it’s NOT over. that rage lurks and waits…but you’re not alone…and your love is bigger.it won’t let you stay paralyzed. with you,

  3. In a nutshell autism sucks. I am not one to put the happy smile “we’re fine” spin on it. It sucks that these children have to go through life like this and what can happen to families as a result is also sad. Of course we love ours kids but the monster of autism is just horrid.

  4. You know, Jess, it is so unbelievably hard. I think about the little tricks my son has developed for himself to almost “joke” his way thru lessons like this at school (and keep in mind, he’s older) and how sometimes the adults think that he’s not paying attention or disruptive or even disrespectful–and yes, he is all that at times. But why? Because all of it is so incredibly hard. Yes he writes and erases a dozen times to get that one good sentence; his brain gets all “fuzzy” as he says and slows him down. So he makes a joke, he deflects, he has a thousand and one avoidance techniques. I sit at home and worry–will he ever pass the tests he needs to pass to move up a grade, go to college, live an independent life?

    And all of it makes me sad, some of it makes me angry and every single solitary day I ask myself “why?”

  5. I get this. It’s the reason I couldn’t volunteer in the classroom. In a weird sort of way, let the tide of anger wash over you. Chew on it. Revel in it. Work it out. Let it fuel you.

    And then you carry on.

    Love you.

  6. This, this right here, is what all my anxiety is about. This is what I don’t know yet. Kindergarten, where Charlotte is at now, all I’m hearing is that she’s doing great, she’s following instructions, she’s staying with the class. Great, fine, yay, but IS SHE LEARNING? Is she keeping up? Does she understand what’s going on around her.

    Your post moved me to tears this morning because you spoke the words that are simmering just below the surface for me. But right now it’s the great unknown. Wait and see.

    I don’t know what else to say, Jess, other than to lend a supportive shoulder. None of us know why.

  7. I only go to the school for meetings – never in the classroom. I went once last year, to help with gingerbread houses, which basically meant his TSS got to dick off while I made sure Foster did more than sit there and lick the icing. Rage, fury, anger – those words all seem very small in the moment, when your entire body is overtaken.

    Also – it seems to me this is what we all do this time of the year, watching out kids struggle where other kids naturally enjoy the holidays – watching our kids with their hands over there ears, mouths slack as people around them chatter and carry on. I’m angry and I don’t know how to fix it.

  8. Let your inner Marzan (Jarzan?) out, Jess. Use your anger to fuel your passion for your daughter’s best interests.

    But no table flipping. Especially not when pasta’s involved.

  9. it’s tough because the anger can come from so many directions. i remember trying to socialize, failing, over and over…and it was angry about how much easier it seemed to be for everyone else. but…i was also angry about the fact that my absolute best efforts to meet people? they felt like a chore, an obligation. it was just me, going through the motions…and even then i wasn’t getting anywhere. so the joyless aspect…the fact that a crucial component of being human felt so empty, obligatory…that was fuel to the anger. so this post struck a chord…where, it’s not only hard for kendall to answer those questions, but it’s also exhausting,something to get out of the way…and i definitely understand where your anger comes from. these reasons and the fact that there’s no satisfactory resolution. it’s unfair. it’s not right. it hurts.

  10. Big hugs. I completely understand. Honestly, one of the big reasons I put Kayla in a special education school, is because I don’t want to be constantly reminded of how far behind she is (she’s 5 and functions at a 2 year old level). I just see Kayla as Kayla. I forget where she “should” be. And then I do something like volunteer at my older daughter’s school and see what kindergarteners are doing and then realize that’s what Kayla should be doing, too, but since she’s not right there next to them, the effect is considerably lessened.

  11. Made a mistake in the above that I need to clarify:

    “And it’ll be that same rage that will keep fueling me until the day I die to keep searching for other things that can help S. It’ll help me to never become complacent, to never accept that ‘this is just the way it is..’.”

  12. Jess,

    In my experience anger is moving in the right direction. It is a step up from despair. Anger means Mama’s gearing up, gathering momentum for the next hurdle. You are strong. Your anger will serve you, and Brooke. And then you will let it go until it is needed again.

    Your emotions are here to serve you. All of them. You are doing a great job.

    Love.

  13. I had a friend go into the back yard with a case of diet cokes after her mother died. She didn’t leave the yard until she hurled each can at a tree. Some days I wonder, “Why haven’t I thrown a case of diet cokes yet?” and then I realize, “in my mind, I have.”

    Just saying, I’m with you. And I’ve got the diet cokes, for whenever you need them.

  14. I had my own moment of rage this afternoon. Most of the time we focus on the good, on the progress, but sometimes? Sometimes it just really, really sucks that my beautiful girl has to work so hard for something that should come so naturally, and it sucks even more that there isn’t a damn thing I can do about it.

    I wish it didn’t have to be this way, for any of us.

  15. Ah Jess. I so get the anger, the rage, the shaking your fist at the sky and screaming why, why, why!!!!

    Things have gotten easier here over the years.. I so vividly remember what it was like when my S was your Brooke’s age (and at that time nobody really acknowledged that something was going on with him – he was talking after all, and all I got was the ‘he’s just being a boy’ bullsh#t).

    I’ll be honest… it’s pure RAGE that has driven me all these years. To keep searching for the puzzle pieces (and that search continues to this day), to find whatever intervention (dietary changes, alternative medicine, educational interventions, outside therapy, tutoring, traditional medicine, etc) could help make things, at first, easier for S. And then, yes, BETTER for S.

    And it’ll be that same rage that will keep fueling me until the day I die to keep searching for other things that can help me. It’ll help me to never become complacent, to never accept that ‘this is just the way it is..’.

    And as to the why this happened, why this continues to happen to so MANY kids? Well, that’s where the solid research comes in. Research into each and all potential contributing factors..

  16. Thanks for sharing so openly and honestly. I wish we had answers. You’re daughter is beautiful and perfect in her own unique way. And you are there to make sure everyone else sees her for who she is.

  17. Wow, you’ve just said what I think so many of us feel. For some reason this time of year is HARD. I think the upcoming holidays have something to do with it. Hugs to you.

  18. The anger I get makes me word vomit on people. Often. I react and I am not always a nice person.

    It is okay to be mad and angry, but I think your right… It just isn’t fair.

    Hugs to you 🙂

  19. Not sure what to say… But for some reason I pictured Brooke, not you, in the restaurant standing up from your chair and flipping over the table with a look of pure determination on her face while she created the commotion and noise. A case of diet coke sounds like a good idea…maybe for both of you? xoxo

  20. I’m with Drama – I never volunteered in the classroom. It was mostly because I always had to leave work early to be with Nigel when school was out, so I wasn’t able to be there during the day. But that was probably for the best, because it’s been hard enough for me to go to the Scout meetings and attend any other peer functions. It’s just a glaring testament to how very different he is and the monumental challenges he faces. Anger-inducing indeed. Sending love to you.

  21. am nodding my head in empathy & emphatic agreement over here. but you said it best in your response to meredith…stay strong. we’re all in this together.

  22. Wow! I can’t even begin to imagine, but you’ve given a small window to what it’s like. Thanks for sharing.

  23. I feel that anger a lot too, but reading your post now, I’m tensing up with anxiety and fear. My baby is only 4, and I’ve avoided thinking about his life as far from now as kindergarten because I don’t want to imagine how painful it will be to watch him struggle, surrounded by NT kids, realizing that he’s different.

    Do you think Brooke is aware yet that she’s different?

  24. meredith – i’m so sorry to scare you. i don’t live here much. and there’s a lot of good where we are. a lot. but the moments are there.

    as for your question, my answer is – i just don’t know. i do think that brooke knows a hell of a lot more than she can yet tell us, but i just don’t know. i wonder if someday she and i will sit and read this together and she can fill in the missing narrative – hers.

    stay strong. we’re all in this together.

  25. Jess, you don’t know me, I stumbled on your blog one day, and have been here since. Your words say everything mine can’t, yet anyway. I have a daughter on the spectrum, and I have felt all the things you have, even the anger. I also wonder why it has to be so hard for our kids, but not having a good answer, yet, I keep looking. I thank god for my family and the help I have. When it gets to much, I remember I am not alone in this. Thank you, thank you.

  26. I have wondered so many times why everything has to be so much harder for our kids. Thanks for writing and reminding all of us that we’re not alone. About the writing part, could Brooke’s aide scribe for her or could she type? That has helped my son a lot, both in terms of saving time and frustration.

  27. hugs. i know that anger well. and it takes practice to keep it at bay. but sometimes we need to feel it, and (i’m sure others have already said this) use it to further motivate you to help kendall and all of our children. i know you will.

  28. I read your post this morning and had to leave it … to cry. In times like this I don’t say “Why,” I say, “It’s not fair.” I know are both useless and impotent. But it doesn’t stop the sorrow. I felt the same when I went to playgroups, to Sunday school, to pre-k. It is an arrow through my heart .. for your Kendall, for my Jack, for all our kids. I’m holding your hand, kiddo. Wanna share some tiramisu?

  29. I was going to write something positive like “channel that rage into enery to help Brooke blah blah blah” but what I really want to say is that I understand and know that feeling, the frustration and all-consuming anger over the unfairness of it all. If it helps at all, there are many of us out here going through something similar. You’re not alone and your feelings are valid. Autism is a dark and frustrating world for the people who have it and the people who love them. Keep writing. I look forward to your posts because when you open your heart to all of us you help us work through our own problems as well.

  30. I read this this morning and am amazed at how your posts so often touch on something I’m feeling. Rage is powerful, rage can get things done… but sometimes it just sucks and flipping over that table is all you want to do. Thanks for writing so movingly about something I think we all feel.

  31. another mama here ready to flip some tables. watching my sweet girl struggle so much is just a little too much some days. and, yes, i feel so f’ing angry about it sometimes. lately, most of the time. i come from a family where you “acknowledge the anger, then move on.” um, yeah, that worked before, but these days… not so much…. i’m glad you’re letting yourself feel your anger, not trying to push it and hide it and erase it. and thanks for sharing this with everyone, because as you can see, we’re sitting right next to you in that restaurant. we’re the ones throwing food and smashing wine glasses :)!!

  32. I have never heard someone express my own feelings so well!
    I think I know WHY….I needed this experience to learn true love, compassion and acceptance. I now wonder WHY I was blessed with this remarkable child who can teach me so much about life.

  33. Pingback: Making a Difference for the 1 in 110 « To Wish Impossible Things

  34. Pingback: for the fathers « a diary of a mom

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