back

“Worry is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained.”

~ Arthur Somers Roche

I have something of a publisher’s block this morning. It’s not writer’s block. No, I’ve got plenty to write. In fact, I have plenty that I’ve already written. There’s the farting Jesus story (oh yeah, that’s a doozy), there’s the post about Brooke using the last of the missing “W” words (hooray!), and then there’s the one about a small victory that wasn’t so small (in which my girl WILL. NOT. GIVE. UP.) But I just can’t bring myself to publish any of them.

You see, my baby’s struggling this week. Really struggling. And I don’t know why. I can’t fix it or even help her fix it.

And so, really – funny stories, celebrations of words and small, not small victory dances feel awfully out of place.

Like Pigpen in a cloud of dust, Brooke has been walking around in a bubble of raw, smoldering anxiety. At the slightest provocation, the door opens on the past. Gone is the little girl with so many tools and so much language, replaced – at least for a brief moment – by the one with no words. The one with overwhelming fears that reduced her to a living breathing mechanism of self-preservation.

The moment Luau or I step near the stove she starts. ‘No noises. No noises. Dad, no noises. Mom, no noises.” A couple of days ago, I warned her that I was going to turn it on. The gas makes a crackling noise as it starts up, but it abates quickly. Her real fear is of the vent, which I assured her I would NOT use. I told her three times I would NOT turn on the vent. She was apparently not convinced. In tears, she grabbed both of my hands and physically PULLED me away from the stove.

Walking into her room she yells back down the stairs, ‘NO butterfly birds.” She waits for reassurance that indeed, there are no butterfly birds in the house. I dont have the slightest idea what a butterfly bird is. A moth maybe? I just know that my girl needs to know (and needs to be told again and again and again) – that there aren’t any in her room.

“No noises at school,” she says all weekend long, every weekend. “There won’t be ANY noises at school.” She is terrorized by the possibility of another fire drill at school. We have plans in place. They’ll warn her, get her out of the building before it begins. But I can’t promise her that there will never be a fire ‘drill’ at school. What if there’s a fire?

“Cookie Monster isn’t here anymore,” she told me yesterday.

“No, honey, Cookie Monster went away a LONG time ago.”

Brooke was three when we did away with the devil spawn talking Cookie Monster doll. She was terrified of the damn thing so we had hidden it away in the far reaches of an upstairs guest room. One day, Katie meandered up there and found it. She began playing with it and made it talk. Brooke heard it and lost it.

All she knew was that she had heard Cookie Monster’s voice come out of the room her sister was in. For the next forty eight hours – two DAYS – she was scared to death of her sister. She could not be in the same room with Katie without shaking and crying. And so, with much fanfare to assure that Brooke knew he was gone, we sent Cookie Monster away to the great Sesame Street in the sky.

“Cookie Monster is all gone. My dad made him go away,” she said yesterday. THREE YEARS LATER.

“Yes baby, he did. Cookie Monster’s gone; I promise.”

“He’s not here anymore.”

No, honey. He’s not here anymore.”

The old self-soothing behaviors are back. The crying, the shrieking, the sensory seeking scratching, the picking at her skin, the scripting in force.

Three of the past four nights, she’s cried at bedtime. Just cried. I’ve laid down beside her in the dark, as I always do. I’ve asked “Baby, why are you crying?” and in so doing have taken the first step back into the labyrinth where we used to live.

“Because I cried.”

“Sometimes when I cry, it’s because something hurts me. Does something hurt you, honey?”

“No.”

“Is something scaring you, love?”

“No.”

“Brooke, what can I do for you? How can Mama make it better?” The old questions, the old insecurities. My life as Encyclopedia Brown – always looking for clues to unlock the mysteries.

“You can hug me.”

And I do. For as long as she’ll let me.

So maybe tomorrow I’ll hit publish on the funny. Or on the new word. Or maybe the small victory that wasn’t so small.

But not today.

For today, Mama’s just trying to make it better.

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35 thoughts on “back

  1. I’m afraid this post has taken Grammy’s words away,too. I’m so sorry. I know how difficult steps back are for everyone. She’ll come out of this. She always does. Keep hugging.

    Love you!
    Mom

  2. It’s so hard, isn’t it? I guess there’s not much comfort in knowing that we go through this too, that there are times when the anxiety is so high and the regressions so overwhelming that I want to turn him upside down and shake all the worries out of him, like sand out of his shoes after a day at the beach.

    I’m sorry Jess. I only know that this will get better; that somehow the moment will pass. In the meantime, I’m sending a hug and wishes for peace–for you and your sweet girl.

  3. Oh, Jess. This must be so hard. But at least she could tell you that hugging her would help. And hugging is something you’re awfully good at. Brooke has so many people rooting for her; she’ll find her way out of the fog.

    Love.

  4. I’ve been gone too long. I’ve missed too many posts and am so far behind. I feel overwhelmed by your writing. Your days have tremendous ups and downs. These days of going back … we get them, too. The noises, the memories, the wagging dresses, the mommies leaving … the things that frighten them. We try to chase them away, shaking brooms at the corners of their rooms where the dark things hide. We hug them, we wrap them in love, we put their favorite pj’s on. Jack and I are staying at home. Because out there is too much right now. We’re having pj days. Because getting dressed is too much. We’re eating mommy food because restaurant and even restaurant food is too much.

    I send you a broom, pj’s, mommy food, and lots of love to wrap yourself in.
    xo

  5. To say life on the spectrum is a roller coaster ride is a simple but apt metaphor. It’s true in a lot of ways, but none moreso than this: the treks up to the peaks are long and slow, and the dips back into the valleys can happen so fast they take your breath away.

    Hang in there, this ride is far from over, and at the bottom of every hill there’s sure to be another climb.

  6. This resurgence of old fears is something that waxes and wanes for Rocky even now. When he is anxious, he reverts to worrying about the possible presence of mice in the house, something that goes back to the day he saw a field mouse in our basement, back when he was three (those early memories are doozies, eh?)

    For us, what’s worked well is using visual prompts (e.g. we don’t have mice thanks to Terminix). Rocky also benefited down the road from OCD medication when the worries took away his ability to sleep.

    For now, sounds like mama’s hugs are the best medicine for Brooke. Lucky girl.

  7. I can only remind you what you remind me – that it ebbs and flows; it’s cyclic; it does indeed abate.

    We’re going through a pre-teen episode over here, if it makes you feel any better.

    Miss M simply told me, “Look, Mother. I’m working it out.”

    I think Brooke would tell you the same.

    Go easy on yourself, and remember that she always comes back.

    For my own, I think it’s a time of recharging/assessing/and fueling.

    Not comforting, I know, but be comforted that we all know, understand, and love you both dearly.

  8. The anxiety is heart wrenching isn’t it? It’s so wonderful that she takes comfort in you and can articulate that to you. I always feel like we are 2 steps forward, 1 step back and sometimes we take a leap backwards so that later down the road we are leaping forwards. Hugs to you.

  9. Sending love to you and your sweet girl on the quietest of angel’s wings. As Kristen said, it’s no consolation to know that this will pass eventually. But it will.

    One thought…when Nik is on the verge of getting *really* sick he will have days of inexplicable regressions and upsets before ANY symptoms appear. Is it possible Brooke’s getting sick so her senses are all super-heightened?

    I so wish I could fix it for you, for her. I know the fear, the worry all too well. Sending love, love, love.

  10. Jess, I couldnt help but think of your post back in July, the car ride home…”Out of the clear blue, Brooke grabbed my arm as though her life depended on it. It was nearly violent in its sheer force. She’s tiny, but she almost knocked me over as she yanked my arm away from my body. She suddenly and quickly wrapped herself around my arm and tucked her head down into the crook of my shoulder.”…
    She knows she can depend on you- to be there for her, to comfort her in the way she needs…for her to ask to be hugged? Well, it sent me looking for the kleenex again. She’ll be okay Jess, just give her the time she needs to sort this through.

  11. Sending YOU (the ultimate Mamma bear) hugs and love as you comfort your precious little bear. And love and hugs to Luau too.

  12. I think you’re doing the best things possible – keep your patience, keep looking for clues, and keep on being there for your girl. It must have been a long weekend, and we all have weekends like those…we SO understand. I want to add that our naturopath helped SO much for Noah’s anxiety using homeopathy – just trying to think about what helped us over here.
    I’ll be thinking of you, and by the way, your words help us all more than you know.

    XO R

  13. Oh, Jess, I’m so sorry. It’s never easy to watch our kids struggle like this, feeling helpless is the worst feeling, but you are right there and so patient. Hugs.

  14. I have to analyze everything to death and try to hunt down the exogenous factors that could be impacting any once of my child’s development. It sometimes works. And sometimes not. Like clockwork, I see regressions at the change in seasons (uh….snow in your neck of the woods this week?!) daylight savings, winter blues…For spectrum kids with their melatonin and serotonin funkiness, I think these little things can cause them to cross the line. And in the meanwhile, grab that roller coaster bar and just hang on super tight. xoxoxox p.s. I’m ordering a light therapy lamp this week. Will let you know if it works. Let me waste the $$ first :)

  15. I’m there right now with my son. I love that she wanted a hug. Sometimes it’s the simplest gesture that carries the most. I try to remind myself that when this happens (as it is happening now to me, particularly with noise) that maybe my child is on the cusp of new learning — the brain activity is too much right now but after this he might have grown a little. Hold on tight. Sometimes all we can do is just simply love our children and we can’t under-estimate the value of that. Thank you for sharing. Best, Katie

  16. i just spent ten minutes staring at an empty comment box, trying to think of comforting words. i even typed a few, but quickly erased them. sometimes there’s pain, no real words to balance that out, things just hurt.

    maybe i can just distract you. have a giant crate of fish sticks airlifted to your house. delivered by none other than captain gorton himself. he’ll even cook them for you, he’s all about that.

    i don’t know. me, many others, we’re rooting for your little one, that she’ll get through this.

  17. We know that everyone has bad days here and there, but why does it seem like our kids bad days are so much badder, er, worse? Hang on to how far she has come and know that she will be back there before you know it. Hugs!

  18. @Jo – dont mean to hijack – I have an Apollo GoLite P1 therapy light. Bought it I think about 4 years ago? Best investment I ever made for my SADD. Do their questionnaire to know what time of day/how long/intensity is right for you.

  19. Thanks Lisa63. I’m getting the newer version but the same one. I’ve been waiting to buy, but you gave me the kick in the pants! If you follow Jess’s blog every day I’ll post back one day soon and let you know how it’s working out for us. If anybody else is interested, best price is on drugstore.com :)

  20. jess, what a lucky girl brooke is to have you as her mama, right by her side with kind words and warm hugs in bulk. there is no better feeling (imo) than knowing your mama is there. really there… i’m sorry these days have been so hard for all of you. please make sure you have someone there to give you some hugs, too. xxxxx.

  21. I hate it when that happens. But happens it does. These little regressions that pop up out of nowhere then fade away without explanation. Just hang tight and ride the wave. There’s really nothing more you can do. Just keep supporting her and I promise, she’ll find her way to shore.

  22. Thanks for the tip about the soft hooded T-shirt. I’m definitely going to try this out. Hannah’s a lot more sensitive right now too for some reason and her anxieties are THROUGH THE ROOF. Her OT today said that she thought it could possibly be due to the change of season and this unusually cold weather we are having. You are in Boston right? That’s not too far from us here in RI. Surely you’re having this freakishly cold weather too. Just a thought. Anyway, I’ll be praying for you, Brooke, and the rest of the clan that things even out quickly.
    Natalie

  23. We know that it’s cyclical, we hope that it’s just a phase. I suppose these trips “back” remind us even more to be grateful for the small things (hooray for ‘W’ words!) and how far they really have come.

  24. I know I said it before, but just remember the progress doesn’t go away; it’s in there. You’ll find a way to help it resurface, even if it’s just by being patient.

    we know just how you feel here at casa del rooster; we’re in it with you; we send you a giant embrace

    when worry gnaws at me, i try to remember that i’ll never look back and wish i worried more, and i try to do something i can treasure, even if it’s eating a hot fudge sundae! but i can say this to you, and yet you know worry does get the best of me sometimes. we are human, and we love our babies fiercely, so this will happen sometimes.

    i had a friend once who promised to worry for me while i took a break. makes no sense, but comforted me. in the spirit of comfort, if you want, i will worry for you for a while. you eat that sundae, or play dress up with the girls, instead.

    xo

  25. thank you all so much for your incredibly kind and generous words.

    after hearing from so many of you (both online and off) that your little (and not so little) ones are struggling right now too, i’ve come to believe that the time of year has an awful lot to do with the added stress on their already taxed systems.

    the rapidly changing seasons, the screwy weather (at least here in the northeast where we’ve vacillated between 38 degrees and snow and 68 and sun all within 24 hours), the dramatically shorter days and far less time out of doors to get the jigglies out are conspiring to make life tougher for our kids.

    add to that the fact that expectations are ramping up dramatically at school right now – the early days of getting to know classroom routines and reviewing old material are quickly giving way to getting down to business.

    it’s not easy on kids who thrive on routine and who need to know what to expect.

    tonight we went to a ball field after dinner. we ran the bases and played imaginary baseball. we ran after each other. we laughed.

    and it helped. a lot. no tears at bed time tonight. just hugs.

    as i so often say, i am so grateful to all of you. i am blessed to be able to purge the demons here and to have a group of caring, wonderful friends who help me puzzle through what’s going on.

    or who just say, ‘i know.’

    thank you. all of you. i am so, so grateful.

  26. Hugs. Those darn mixer-board slider-switches! (my own metaphor for those outta-nowhere, for-who-knows-how-long regressions)

    I’m glad to hear that you had some good running-around family time. And to see you post the “excuse me” conversation today!

  27. Take all the time you need to hug Brooke. This is heartbreaking. To not know what is wrong or how to fix it. Just as bad as knowing what is wrong but not being able to fix it. I lift you in my prayers today.

  28. I am a new reader of your blog but catching up on old posts. After reading this doozy, I am sure we are living with the same daughter! Our ‘cookie monster’ was the old tickle-me-elmo which could not ever be in the house for any reason.

    Our aide at school has strict instructions to get out of class 5 minutes before each fire drill. Unfortunatly, the school had a false alarm one day that caused about a week of tears and fears about going back to school, but it evenutally faded. Now my daughter points out all fire alarms wherever we go and asks to make sure they aren’t going to go off. On a recent trip to Disneyland she had her own disposable camera and when I got the film developed, I found pictures of more than one fire alarm, so it’s going to be one of those things we are just learning to live with. On a positive note, she was up, dressed, hair & teeth brushed and ready to go to school all by herself today for the first time ever, so there is light at the end of the tunnel….

    As or favoite fish Dory says “Just keep swimming, Just keep swimming”

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