too big

*

I have this thing that I do. I wake up in the middle of the night, panicked. Oh, yeah, it’s a hoot. Nothing better than waking up night after night feeling like you forgot something. It’s awesome.

Anyway, the bigger the real issues in my waking life, the smaller the ones that wake me up. Was that English? Let me try again.

When really, really big issues loom, I find myself really, really worried about small ones. I’ll wake up panicked that I forgot to sign a permission slip or that I haven’t returned an e-mail to a friend. I’ll perseverate on things that need to be done – send in the insurance forms, get the tail lights fixed on the car, call that yoga teacher who we hear is a wonder with kids like Brooke.

There’s always a list.

There’s always something to gnaw on in the middle of the night.

And the bigger the big stuff is, the more I worry about the small stuff.

It’s self-preservation.

Even though the list never really disappears, at least the items on it are manageable.

They’re wrangleable, fixable, doable.

The big stuff?

Not so much.

*

Two Saturdays ago, in the car ~

Brooke has been crying and yelling for much if not most of the day.

After much discussion and collaboration with nearly everyone in her life, we have tried what was to be a two-day change in her meds. It’s not working. It’s the opposite of working.

We’re in a death spiral.

From the back seat Katie’s voice is pleading. “Mama, Brooke keeps doing this thing with her jaw. Why is she doing that? She’s moving it up and down and it’s weird. Why does she keep doing that?”

I take a deep breath. I don’t trust myself to speak.

“Mama?”

“Katie,” I say, trying desperately to keep my voice even,”let’s talk about this at home, OK?”

Brooke looks like a 1980’s investment banker hopped up on coke. Her eyes dart around the room, her jaw works non-stop. Her eyes are dark, her skin is sallow. She has been shouting through tears, “I am SAD.”

My heart literally, physically aches.

I want this shit out of my baby’s body.

NOW.

This isn’t OK.

I want to scream. I want to break something. I want someone somewhere to feel this pain.

I have no control over what’s happening to my girl.

I focus on time. The med has no half-life. It will work its way through her system by nightfall. The nightmare will be over. At least for now. So I focus on time.

When we get home, Luau takes Brooke downstairs and I get into the shower. I turn the water to scalding. It doesn’t help.

Katie comes in. “Mama, can you tell me what’s going on now? Why is Brooke acting like this? Why does she keep yelling and why is she so sad and why is she doing that weird thing with her jaw? Can you tell me now?”

I tell her what’s happening. I tell her that Brooke’s medications aren’t right. That Daddy and I have been working with Dr S and Dr Dreamy to figure out how to fix it and that we tried something today but that what we tried didn’t work.

Katie’s face melts into an awful mask of confusion, rage and sadness. Her voice is plaintive yet hard.

“Promise me,” she says. “Promise me that you won’t DO THAT TO HER again.”

It is an accusation.

I stand still and try to process her words. I can’t breathe.

I can’t promise her. I don’t know what we will have to do next. I don’t know what to say.

Before I can find the words, she begins to cry and runs out of the room.

I turn my face into the scalding water. It burns, but not enough to help.

*

The last line of the e-mail that I sent to Dr S reads, ‘I can’t speak for Luau, but I really need some guidance here. Where we are is clearly not working and I don’t have any idea what to do next.’

We meet with her on Thursday night.

And until then I will wake up panicked about tail lights, insurance forms, yoga teachers and unreturned e-mails.

Because I have this thing that I do.

When the big things are just too big.

66 thoughts on “too big

  1. That’s just awful, my friend. Our minds do torturous things to us when they’re in survival mode, searching for some semblance of control. My heart aches for you, your girls and Luau. *hugs*

  2. You know your “Cats don’t have dogs” line (which I love by the way), perhaps it applies to Brooke’s anxiety, perhaps the big anxiety is actually made up of lots of little ones that just grow too big….

  3. On one medication my son said to me, “mom, what do the voices say to you?” Ok. This medication is not working is what the voices were saying to me at that time. Not what I told my son but I quickly called the doctor once we were home. We were in the car at the time.

  4. I know the feeling. When finally I was in a place to try meds with my son, wouldn’t you know it the first one made it so much worse for him and very frightening for us.I was close to calling 911. I already was petrified to try , and then we switched and tried something else and again it was not good.I kept thinking how can I put him through this ? Looking back I don’t know how I agreed to keep going but we did and we have not found the perfect one , but one that we are glad we persisted to find.

  5. DOAM, so sorry that you are ALL going through this. Prayers are being said daily, that is all I have, but I believe in them. I believe in you too. One love:)

  6. Reaching out a hand for you to hold…I have known this pain, too, and wouldn’t wish it on my worst enemy. Sending so many good thoughts, wishes, prayers and please to the universe that there is a better solution for your sweet girl. For you all. Love. Love. Love.

  7. So I have this analogous thing that I do when it’s all too much, which is to go all Super Analytical and make categorized lists ad museum. Sort my boy’s issues and prioritize possible avenues to address them.

    God forbid the emotional duct tape should snap.

    God knows what my boys make of this when all is melting down and I am making the decision tree.

    I took very little comfort from the NYT story last week on women and sleep that related the stunning news that sleep disruption and sleep deprivation are most common among women with children and especially among mothers who work. Pretty sure there must be a special category for mothers with special kids. One woman said something like “how am I supposed to be this multi-tasking maniac all day, and then become a zen master at bedtime?” Yeah, exactly.

    So…is company comfort? Every time I read this blog I think so! But I’d still rather be reading on more than a few hours of sleep.

  8. We have been in your shoes. Keeping your family especially Brooke in our prayers. We have tried so many different medications and then we found one that kind of worked (risperdal) but then my son became one of the rare cases and got a conditon called Tardive dyskinesia (ticking). It now means anything in the Risperdal family of drugs he can no longer take. My son is basically on no meds except one that helps him go to sleep (not stay asleep). I wonder on days like you just wrote about, people expect us (mommies and daddies) to keep it together and not go off the deep end. Not sure about you but I am finding it hard not to just lose it. Im trying so hard to be strong.

  9. Your pain and struggle are ao palpable in the words you write. I can offer virtual hugs…and, again, the words to assure you that you are not alone. I know your pain…I understand the struggle, and, I, too, wake up worrying about little things. I hope Thursday’s meeting gives you all a new plan and refreshed hope.

  10. I hope it helps to know that lots of us have been through it. We also had terrible and frightening side effects on the way to finding the right meds. But we try because we may find something that really helps. And we wouldn’t want to feel like we didn’t try.

  11. Will be sending your family huge “vibes” Thursday night, because we’ve been there too, trying to help our son and instead making him sob for twenty-four hours straight. It took me a long time to get past that one. I’m so sorry for what Brooke and your whole family is enduring right now. Hoping for all of you this visit brings you some peace.

  12. Thursday’s comin’ just hang on…and I hope it gives some direction and help for your girl…for all of you. We’ve thus far avoided meds, so I can’t relate to that part. However, having boys that have various vocal and motor tics that are sometimes a non-issue, but oftentimes very annoying to siblings I can relate to some of the pain of Katie’s conversation about Brooke’s behavior/the jaw thing. It’s so hard trying to be/do/say all that each child needs in those moments, especially when it’s all too big even for us. You already know, but I don’t think we can ever hear it enough…you are not alone. ((hugs and prayers))

  13. ****Heartbreaking!*** We only want what is best for our kids. We want to help them be the best they can be. To ease their pain. And most times, it is out of our control. And all we can do, is sit back and deal with the aftermath. But we know, that we are doing all we can, out of LOVE and out of determination for a positive outcome. As parents, we must stay strong for our kids, but we also must take time to let our guard down and grieve when things get TOO big.

  14. My daughter had an identical reaction to a med. It was terrifying to watch. I felt helpless. I hope Thursday goes well and you along with Brooke’s Dr. are able to find a med that gives her the relief she needs!

  15. definitely self-preservation at it’s best…hang in there.
    meds are all about trial and error. it’s scary knowing you won’t know unless you try, and even scarier when you try and it’s worse than before.

  16. I do the same thing, wake up in a full sweat about something so minor. Two things help a little, one is my chant “During the day we do our best, nighttime is the time to rest”…Childish I know, but it’s like counting sheep and really hard to focus on some small worry when this annoying voice keeps interrupting you with a silly chant. Also, Gaba from the health food store, helps with the anxiety a little, or esle it’s a placebo and I just think it helps, either way it makes me feel a little better. Glad to hear Brooke has the meds out of her system now, I hope she is feeling so much better.

  17. I can’t make it go away but your whole family is in my prayers. Take care of you too, you are too valuable to all of them! Hugs….

  18. Night sweats and horrors are the lot of almost all loving parents but you, and parents in your place, have so many more pressures to cause you to find sleep a lost cause. It is probably better to get up and have a cup of tea and write to all of us untill sleep is all you have left to do.
    I also think you inherited the propensity to carry the world on your shoulders but you do it better than I could. I’m confident that you will find the right med to help our baby but remember it isn’t an exact science and it may take a little time.
    If you can’t sleep at night call me I will likely be up anyway, thinking about you and yours.
    Love you,
    Dad

  19. Jess,
    Did B. activate on SSRIs? This happened to us, and it was perhaps one of the most terrifying experiences we have ever been though. Beyond scary, The *only* solace is that ultimately it was reversible.

  20. Oh, I do the same thing when things are rough with Emmett! My theory is that I have to obsess over the things I *can* control, because obsessing over the things that I can’t fix will make me shatter. It’s a survival skill, I think.

  21. We have been down this road. K was on one med where I could actually see the change in her face, from normal to full of rage, after taking it. It changed her personality completely. The magic med that was supposed to bring it together. Yeah, right. We have tried meds that have caused my poor child to balloon up 15-20lbs. I hate the trial and error. I hate the lasting effects they have on my girl. I have come to realize, even with the perfect med, it only helps a bit. Adding and changing never help more, and usually help less. Right now she is on one med for her anxiety, and even though things are far from perfect, we are accepting the help it has brought and, yes, refuse to use her little body as guinea pig any longer. It’s such a hard road. As a parent it is impossible to watch your child struggle like this, especially when something is supposed to be the golden ticket. I, too, have the anxiety that keeps me awake at night. Where even the mundane begin to feel overwhelming. I can’t even think beyond today, because such an uncertain future can be too much. You are definitely not alone.

  22. Jess,

    Your Facebook updates with links to your new blog posts are the first thing I see every morning (yes, I admit to checking FB before I get out of bed. It’s the only time I actually have to do it during the day). My husband too often finds me lying in bed with tears streaming down my face and asks if something good or bad has happened to your girls.

    Anyway, as does everyone else, my heart goes waaaayyyyy out to you and yours. It’s amazing the similarities I see with our kids and lives (1 NT, 1 ASD. Husbands that are runners, and run to raise $ for autism. And, I think you mentioned somewhere that you grew up Jewish? Me too). I’m living similar roller coaster ups and downs with my 4yo aspie. I recognize the pain. And the joy.

    But, I had a question. I’ve been talking to a yoga teacher here in Denver who does an after school club at my kid’s school. She was great with my son and has told me she’s interested in bringing yoga to our kiddos. I, of course, am falling all over myself to help her. You mention a yoga instructor that’s really good with our kids in this post. I’m wondering if there’s a way we could connect the two? Share some information and advice?

    Either way, Mama. Stay strong and take care of yourself.

    • ty for the kind words. as for the yoga teacher, it’s no more than a lead that we’ve just heard about. i have yet to even contact her so i’m not in any position to try to connect her with someone else. so sorry, cause i’m the first one to try to do that. hope it works out for both of us 🙂

  23. I felt your post so much today that I had to reply. usually I read but dont respond. I’m afraid obsessing and stressing over big or small issues are the only coping mechanisms I have in dealing with my ASD 4yo DS. Everyone else seems to dismiss the issues and puts a “it’ll get better” face on it. While I hope and pray to God that it will, somebody has to worry about it all. So I get it. I get the sleepless nights, the awakenings, the second guessing on meds and accusations from family and friends. Yes it is comforting to know that there are others in our world who feel the same but you’re right, it’s a shame we have to even “worry” about it. Big hugs to you.

  24. I read your post this morning and couldn’t comment b/c it too close to home right now for me, but of course, I’m back b/c I can’t stop thinking about it. We recently took my son off his meds b/c of his reaction to it, so now he isn’t on any, and I keep putting off the visit to the pharmacologist eventhough I know he needs to try something else. I hate this. It’s not fair that James has to hurt like this. It’s not fair the Brooke, and Katie, and both you and Luau have to. Or any other family. I’m completely disheveled and sad and scared and angry. I have no words to help you other than I’m sorry you are going through this and I hope that Dr. S is able to help, and soon.

  25. I get it. whew, do I get it. I’m sorry. Take a break when you can. Seperate from it all even if it’s only for an hour. It helps me to take breaks, even if I have to have my Dad drive from two hours away to watch the kids( I’m a single Mom). Put the oxygen mask on yourself first, then your kids…there’s a reason why it’s supposed to go in that order.You’re an amazing Mom, and I am thankful that you have this blog. I hope it helps a little to vent here..even if it’s just a little tiny bit.

  26. Focusing on the small things is healthy. These are problems you can solve.

    We haven’t gone down the medication path yet, and I’m scared to death of it, though I know it may be ultimately the right thing to do. So sorry you are all going through this. Good luck Thursday. I hope things resolve quickly.

    • It is only ‘private’ for 1st time commenters while it is awaiting approval. Now that I’ve approved this comment , if you were to comment again using the same name and e/mail address that you used here, the comment would immediately be public. If you added an initial to your name or used a different e/mail address it would go thru moderation again and only be published upon my approval.

  27. I wish there were something I could say that would help, but all I have is sympathy and love. I’m so sorry. I hope that today you get good news.

  28. Been there…it is the most horrible feeling in the world to know that something are giving your own child in order to help her is hurting her body. It physically hurts your own body as a mom when this happens. And you swear you’ll never do it again if only her body will flush it out and bring back “your” baby again. Virtual hugs to you, dear 🙂

  29. It really is hard, when you know there are other meds. but my son can’t take them because he can’t(won’t) swallow them. He has to have them opened over applesauce or he chews them. So we vare limited. I totally understand about the tics, man they can get to you!

  30. Very interesting blog… I will make sure I will continue to come by read and support you, your family and Brooke.

    My daughter Ca-Nefer is about to turn 14 so the things you write about… I remember, but now we are in new territory. A 5′ 10″ athletic autistic teenager!!!! WOO HOO… Ahhhhhhh…. 🙂

  31. My son at the “jaw movements” when we tried all different ” stimulants” for adhd. Come to find out 2% of children with Autism can not handle the stimulants. It broke mine and my husbands hearts watching him go through the same reactions to this medication that a person on “meth” would go through. We found this wonderful doctor who finally listened to us , about how each kind of Stimulant they tried him on what it did to him. He acted like he coudlnt stand his own skin. This Doctor put him on a Medication Called ” Tenex” this is a wonderful medication for my son. It has really helped him open up to learning and he has become more social, making eye contact, wanting to interact with other children and trying to even TALK. He is a very happy child now. The first week he was a little sleepy from it , but that has went away. What I truly like is that it is a non stimulant drug. Since we started him on the medication he has had no out bursts of crying or screaming. We had never heard of this medication but I truly believe that it has helped him. I do not like my child having to take meds but this one has helped him greatly.

  32. I know you said:,” i want someone, somewhere to feel this pain”, well i am that someone; 3 years after my son’s diagnosis i’m still on that same page, blaming myself for this nightmare he goes thru everyday.
    I’m battleing with some very strong depression, but i can’t tell nobody. All i can do is put a smile on and try to keep breathing, even when i don’t want to anymore.
    And my everyday is filled with the same questions: why my son?, what did i do?
    I wish you and your babies all the best and hope if there is really a God, that he can help our children and stop the suffering.
    If you ever just need anybody to vent, i’m here to listen. best of luck.

    • Johanna, it is very brave of you just to say that here – that you battle, too. I hope for you that you *do* seek an outlet for yourself, too. Your health, your emotional and physical health, are just as important as the health of your child. I hope for you that you can reach out to a doctor, a counselor, someone that can focus on *you* and your own suffering. You deserve that.

  33. Another Medication that really helps my son is Respiradol. Some say it makes the children gain weight. It has not done that to my child. Even if it did I would be ok with it , If it helps him. My son is adopted and has came along ways since we first got him . The new med Tenex has opened him up . I can not brag on this med enuff. He is even actually sleeping through the night on it . He and I was not sleeping at all sometimes days on end. My son had to have his appendix removed 2 weeks ago so we were in the hospital for a week. The staff at the hospital kept commenting on how loveable and how much he responds to me and my husband. They said they had never seen a child so close to his caregivers like my son is to me and my husband.

  34. Wow. It’s like you’ve put into words EXACTLY what I’m going through- but don’t know how to express. Thank you.

  35. I can relate to this 100%! Over the Summer I had a similar incident with my youngest son. Meds are a last resort for me but health issues and behaviors got to that point. We ended up taking him off the meds and over time he has actually done better.

  36. I am in your shoes right now, too. The saying one day at a time has turned into one second at a time, which makes a day really long and makes me not want to go to sleep at night because on night’s heels comes another day with just as many seconds. I understand the sibling interactions, too, and experience my son trying to help and being angry – why is she on so many medicines? why aren’t you trying harder? It’s a tough road, thanks for sharing your story. I applaud you for blogging, I don’t have the energy to rehash things every day!

  37. I do it too. It has helped me to keep a running list of the little stuff and check it off as I go. Keep it next to your bed, write it down when you wake up panicked and let it go. I don’t know if you are religious, but I also pray every night for God to “take my thoughts out of my head till the morning”. It’s a control thing. You can’t control what is happening to your daughter and worrying about the little things gives you some sort of control but drives you insane too. I feel for you. It is not an easy job with this kids, but we have them for a reason and just the fact that we worry so much shows how much love we have for them and how we will stop at nothing to help them.

  38. Wow ! I do the same things about my to do list, wake up in the middle of the night over bowling money, or whether I packed my son’s swimming stuff. As for the meds, been there done that, still struggling. The one med that really works is Focalin, the insurance won’t pay for it, so Im fighting them and some days I feel the need to be medicated too. It’s so hard to see them so frustrated, anxious, sad, angry,and even down right mean. My heart goes out to you, being the parent, the one they count on, can be so hard. You feel so alone, “Why can’t someone help me !!” is screaming in your mind. Im a single mom so ME time doesn’t exist, if you can grab any downtime, do it ! My friend offered to take Josh for a couple of hours so I could get my haircut, I said no, he’s too hard to handle right now….blah blah blah. BUT I finally agreed and I felt like I had been on vacation. Just a little time to recharge, put my head back on straight lol ! I also realized it’s been 3 years since I did something fun, with friends, no kids, so I am attending my 25 yr high school reunion this weekend. Thank God for my mother !! Keeping you in my prayers !!

  39. I just want you to know that your words help so many others who face similar situations. While it doesn’t make things better, it does make it a little easier to face when you know there are other parents going through something similar. Thank you for bringing comfort to others by sharing your experiences and struggles. I hope that sharing brings you some peace, and we will include you and your family in our prayers.

  40. Oh so been there – pulled my daughter out of school to home school because meds were just not the answer. Hugs to you – we just have to carry on carrying on … it is what we do …

  41. I’m a Year 3 teacher and have a student with ASD. We do it tough each day managing him but you have put a whole new perspective on what it’s like for families. I have a whole new appreciate for you and think your an angel for just getting up each day and continuing on. My thought are with you. xo

  42. I actually feel physically pained for what you are all going through….. Prayers that it will be better…. Um, now. Hugs.

  43. I have been where you have been and am still there now. It is a place I frequent because my daughter is growing so fast and because her body gets tolerant of meds quickly and we have to try something new. It is a painful, excoriating process. I hope for Brooke’s sake and the rest of the family that answers are found soon and relief is on its way. It is so frustrating to watch our children suffer and be helpless. I HATE that feeling! Hugs and prayers sent your way.

  44. I read your post and felt every word. Now I know why I focus on making jewelry or something completely outside out of the “big thing” in my life…my son and all the Big decisions that need to be answered. Thank you for making me feel like I’m not alone. I hope you get a little piece of “peace” soon and am sending a big hug to you and your family. We all feel each others pain…we are all here with you.

  45. My son is autistic and schizophrenic. He’ll be 30 this year. I knew when he was 3 that there was something wrong. He was 15 when he was first diagnosed. It has been a hard hard 27 years but it is does get better.

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