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Catching Up

Every Monday for eight months, Susan has come to our house for the evening. Her official title is Behavioral Management Specialist. When we agreed to this service, I was reluctant. I didn’t think she could help us.

This is the one where I think I’m so damn smart that I’m pretty much a world expert and it comes back to bite me in the ass. That’s kind of like saying, “This is the Three’s Company episode where they have a misunderstanding.”

And in spite of myself, Susan taught me. Tips and techniques? No; I did, in fact, know those. My philosophy was in line and appropriate; my knowledge was extensive. My attitude, though?

Lousy.

Susan walked into our house and looked at our boy and saw…a boy. She peeked underneath the raging cauldron of illness and symptoms on the surface and saw Carter. By watching her, I learned to do that, too. She repeated a mantra with me: If he could do better, he would. She repeated a mantra with Carter: Attitude is everything!

Both of those mantras were really for me.

I watched her noodle around and find ways to get Carter invested, to get him fired up and excited about things he could accomplish.

I learned to do that, to be on Carter’s side. Brian and Carter and me, a team, fighting against the illness and its symptoms. One for all and all for one!

We “graduated” from behavioral management services this week. I’m less smart now than I was when we started. That’s a relief.

*          *          *         *          *

Yesterday, when I picked Carter up from school, one of his teacher’s said to me, “He had a really, really good day! He’s doing so well; we’re all amazed at how fast he’s learning!”

Carter, on the way home, spoke almost without breathing, “Mom! I’m so far in my math book, I might have to start a new one soon! I just sit at my desk when it’s time to do math and work super hard, and if I need help? I just ask, quick as a wink! I get so mad when I have to sharpen my pencil because that means I have to stop and I hate when I have to stop! I like math even better than recess. Can you believe that? And I read a whole book today! Well, not a regular book. It’s this thing on the computer and you click to get to the next page and I read every single word! Can you believe that? And we’re learning about reptiles and amphibians and mammals and…and…shoot! I can’t remember what the other one is. What’s the other one, Mom? Oh, yeah, fish! I like the reptiles the best except we couldn’t have one as a pet because Lolly might eat it. Hey Mom, I’ve been working so, so hard at school and aren’t you amazed? Can you believe it?”

I hear, in his voice, not the pressure and confusion of mania but the excitement of a child who is experiencing success. He’s proud.

There is no greater joy in my life than to see my children feel proud of themselves. Carter has infinitely more to be proud of than most kids, but far, far fewer opportunities to feel that pride.

In the past year and a half, when other kids his age were learning to add and subtract, to read books and write stories, to play basketball and ride skateboards, Carter was learning to live with monsters. He was learning ways to manage his anxiety and where he can feel a rage start in his body. He was learning how to tell doctors and therapists what they want to hear so he could get out of their boring offices faster (not a lesson we’re happy about). He was learning (Please, God, he needs to have learned this.) that his dad and I are in this with him, no matter what.

*          *          *         *          *

In the past 20 months, I have seen the best of myself, and the worst.

I’ve seen the best of Brian, and the worst.

I’ve listened to my little boy beg me to kill him, or to let him kill himself.

I’ve refused to do either, repeatedly.

I’ve thwarted a suicide attempt.

I’ve watched him struggle with monsters.

I’ve adjusted to new diagnoses, added to the many that he already had.

I’ve administered over 6,000 pills.

I’ve stayed awake with him dozens of times because he couldn’t sleep.

I’ve stayed awake by myself dozens more times because watching my child suffer is an agony that sometimes refuses to take a break.

I’ve met some people. Wonderful people who love me and who I love. Some understand how I feel; some do not and yet they add something extraordinary to my life.

I’ve found my way back to the practice of using letters to make words and laying the words down in lines until there are stories.

I’ve learned to revel in every tiniest joy.

I’ve become accustomed to living at alert level red.

And now? I have to re-learn regular(ish) life.

You know that feeling, after you take off a very heavy backpack and you feel like you might float away?

I feel like that. Free and joyful but also disoriented and a little dizzy.

I’m finding my way back to the ground.

*          *          *         *          *

Carter is not cured. He has a severe, chronic illness. Everything could fall apart next week, or tomorrow, or later today. There are more crises in our future; adolescence looms like a hulking monster just a few years away. But what if the next few years were quiet?

That could happen.

His illness is not in remission. The little guys are here; his emotions are more volatile, fluctuate my widely, than for other kids. He’s afraid of so many ordinary things.

And yet? Quiet. Calm. It’s all relative.

Happiness.

I expect catastrophe. This is me, telling you that I am trying to learn to expect nothing, to walk around on the ground grateful for the many gifts and unsurprised by the many pains.

It is what it is. It can never be anything else.

*          *          *         *          *

This morning, before school, Carter said, “I have lots of catching up to do, Mom.”

“Why, babe? You don’t have to catch up to anyone; you get to be Carter, doing Carter things.”

“But Charlotte and Sean sent me all those presents and I didn’t write thank you cards to them! If I was sad or upset that day, they didn’t know that was why. They still sent me the presents, right?”

“Yes, they did. We’ll make thank you cards after school, OK?” My breath, caught in my throat because this boy? Whether it is because of his baptism by fire or because that is just who he is under his illness, this boy understands kindness and gratitude.

He crawled into bed with me this morning, scrunched right up against me with his face in my neck and we both went back to sleep. He was late for school.

That’s OK because we have lots of catching up to do.

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58 comments to Catching Up

  • I don’t really know you at all, but I’m proud of you. You’re a strong woman with a strong and good heart and working to produce a strong and good boy despite the challenges.

    I know autism isn’t the same as what you’re dealing with but I’m in the middle of a non-fiction book you might relate to/be interested in. It’s called “Cowboy & Will” by Monica Holloway (the mom) and it’s about the way getting a dog helped a young autistic boy find his way a little better. It didn’t cure anything (obviously there’s no cure) but it made life a bit more manageable.
    Lisa @ Grandma’s Briefs recently posted..Buried in books

    • Thank you, Lisa.

      Autism is not the same, but there are many overlaps. I might pick up that book later on; we have 3 dogs, but one is Carter’s buddy. She is the perfect dog and he adores her.

  • I am so happy for you and your family– and these small victories. The person I’m close to who has similar struggles as Carter has beaten the odds in ways none of us could’ve predicted or hoped for, graduated from college and is one of the most amazing people I know.

    I can’t imagine the things you’re all going through and while it may not be much, I’m sending *hugs* your way.

  • d

    every single second of the day is so precious!! Carter is precious and he has a friend here who asks about him often. She saw, the day she got to play with him, what Susan saw. It was easy for us (myself, my mom, my daughter and my husband) to see him as the little boy he is that day…because of you. Because of your tears, because of your anger and your frustrations, because of your unconditional love for your son, We got to see Carter on a good day (well, ok, we got to see him have a few good hours) but the point is…Those good moments are starting to happen more and more because you have brought people like susan and his teacher into his life that see him like a little boy first, illness second. Bravo Adrian. You have taught this mom more than you can ever imagine!

    • It always makes me smile to see you here. You know so much of MY story, the things that came before Carter, and you know how that makes the picture different.

      And thank you. Many, many thanks. He is precious; he is extraordinary. Seeing him smile is indescribable.

  • Jorene

    NO problem being late…I’ll write you a note….hugs.

  • What a sweet post, enjoy the happiness in catching up.
    Mama Bear recently posted..Smashed to Pieces

    • Sigh. Thank you.

      You know how hard it is, to sink into this and really BE here for it, without watching over my shoulder. I’m trying to learn to do that, to be watchful while being fully present. It’s so rare. I hope you have that again at your house, and SOON.

  • This post made me cry like a little girl. Literally weeping at my desk at the office.

    What got me? The paragraph of Carter recanting his day at school.

    Although I’ve never heard his voice? I heard it crystal clear in my head as I read through.

    I have never worked long term with kids with mental illness, but I have worked in SED classes and have seen the day to day victories and defeats.

    This is definitely a victory.
    Eileen recently posted..The Week Ahead

    • Oh, Eileen, thank you! I can’t tell you how happy it makes me to make people cry with JOY for a change!

      He’s so puffed up with pride right now, he’d bust his buttons if he was wearing any. Best. thing. ever.

  • I’m with Eileen. I’m sitting here crying, out of happiness, for both you and Carter.

    I can only imagine what the little things, that most people (who have children without issues) take for granted, mean to you.

    • Oh, yes. The things that seemed very ordinary before Carter came along? Are now monumental.

      But what I want more than anything is to have the chance to take them for granted with Carter, too. I want to see him smile and hear him laugh and think nothing of it. My fondest wish!

  • Beautiful! And beautifully written. I love the line, “I’m less smart now than when we started. And that’s a relief.”
    http://www.pampersandpinot.com

    • Haha! Yes, it’s a theme in my life, this problem I have with thinking that I am SO damn smart. Most of the time, it’s just a burden, but I cling to it anyway, for whatever reason.

      Thank you.

  • Jen

    Congratulations on your and Carter’s achievements! My son (3yo, ASD) does’t talk yet but this post gives me hopes for the converstaions we are going to have in the future. Maybe it is just the start of the school year, but I’ve been reading so many great updates on special needs blogs. Something good is in the air for once!
    Jen recently posted..Excuse me!

    • Fall often is a good time; in the spring kids with mental and behavioral health issues tend to fall apart. I’m buying some full-spectrum lights this year so hopefully we can have an easier time next time around!

      There is always hope, but I have been in places where I couldn’t see it. Hang in there.

  • i am so glad that you are having time to catch up with carter.

    and that he? is feeling so much better.

    sometimes?

    being late to school is a good thing.
    cathy recently posted..Baby Snakes

  • I have had so much good news this week and then I sat down and read this…and now? The tears are streaming. No good news for my family…but for my friends and other family members? TONS of good news. So much so that I am overwhelmed with thankfulness and joy for all of you.

    Over and over you make me proud to say, “yeah, I know her. She’s my friend.” even if it is just cyberly.

    I just…I just don’t have the words for how happy this post makes me.

    So much love. bursting all over the place.
    Katie recently posted..Back To School Bonanza Giveaway Recap

  • Anonymous

    Again you help me feel how you are feeling through your words. I really really think you are an amazing writer and mother, wife – woman.

  • I am happier now than I have been all day.

    And I was pretty happy earlier (PPNB got an interview. Yay!)

    And still this…this is bringing me much happiness.

    I don’t care how long it lasts (although I hope for many many moons and more).

    I am happy *now.* Because you are feeling backpackless-light *now.*
    Lori @ In Pursuit of Martha Points recently posted..Writer’s Wednesday

    • Yes! You understand! I hope it lasts a long long long long long time, but even it it’s gone by the time we sit down to dinner? There is joy here right now.

      Sigh. Thank you.

  • Meg

    That’s great news!!! I’m so happy to hear there is some calm now. Beautiful.
    Meg recently posted..Back To School

  • LCW

    When I taught school I worked with students who had special needs; Autism, severe learning disabilities, etc….The best piece of advice I heard from a parent talking about her child was this: I see John (name changed) for who he is, I love him regardless if he can’t say it back or he may never understand the love I feel for him. I don’t expect him to be “cured”, I see John for everything he is and isn’t.

    She accepted him and the diagnosis and he was the one of the best little guys to work with, because we had mom on our side and more importantly, John’s side.

    I’m so glad you’re enjoying life right now.

    • Thank you.

      It’s so hard sometimes, to see the boy he is instead of the illness that sometimes crowds him out. But he’s always in there, he’s always my little boy. But I’m getting better at it.

  • I’m so happy for you that I could just burst! That is definitely “goo” which is infinitely better than “good”! 🙂 Just lovely. Just wow. That’s all I can say. Just wow! I’m so glad for you!
    thebluemoongirl recently posted..Panic Room

  • Gratitude for this.

    Love that recognition of the difference between excitement and mania. The ability to recognize when the words are being pushed out of the well of “too much” and when they are simply a boy who is soooo happy about what he is doing that he can’t wait to tell you all of it.

    So proud of you for “graduating.” Priceless days, these are.
    Barnmaven recently posted..Impulse

    • Yes, priceless. For the better part of a year, I have been thinking, “If I could just get a chance to catch my breath, we could keep going!” But the chance never came. We would have a few quiet days or weeks, but not long enough. The healing takes time for everyone.

      And thank you. I hope you have similar quiet at your house very soon.

  • Wow! I’m with Katie here, busting out all over with happiness and joy for you. Truly, it made me so happy to read these words. I’ve had an exhausting day alone with the kids in the “vacation” house (my husband had to leave us to go back to the city because his frail 93 y.o. mom went into the hospital the day after we got here) and needed to see something full of hope and light. And yours is the real deal because it comes after so much darkness, struggle and despair. And because you are able to let it be exactly what it is for as long as it will be. School doesn’t start for us until mid-September, and I look forward to it with both joy (a moment to myself again, whew!) and trepidation. Jacob starts a new school with all the attendant hopes and fears that go hand in hand with that (why, I think I smell a blog post brewing here) and Ethan… I am worried about. 3rd grade really ratchets up the pressure, so the “medicate or don’t medicate his ADD” dilemna will come to a head this September and I haven’t decided on which side of the fence I have fallen about that. But wait, enough about me… I am so so happy for you, and especially for Carter who is feeling happy and proud of himself, and all the wonderful things little boys deserve to feel that he’s had precious little of. Damn, I’m crying again, better not short out by brother-in-law’s laptop. All love.
    Varda recently posted..The BlogHer10 reflections of a very slow newbie blogger

    • Thank you! Yes, it’s been one of my biggest challenges since Carter was born – to be present in the moment, not worrying about what might happen next when things are good or refusing to accept and make the best of things when it all goes to hell. Really hard.

      I think many, many parents of kids with SN (especially SN of an emotional/behavioral sort) have ambivalent feelings about school. Our kids are SO intense that the hours away from them are essential for our well being. But then again, our kids are needier and it’s way scarier to hand that over to other people who may or may not even really give a shit. And then, of course, the decisions. SO MANY decisions! Meds or not? IEP, 504, what classification, what services? And the policing – is the school following the IEP? Is my kid getting what he needs?

      Yeah, exhausting. And we need rest more than almost anyone, but we get far, far less time to recuperate than almost anyone, too.

      Sigh. It’s so hard. So, so hard, and when the good times come, they shine like jewels.

  • And can I just say (not to hog the comments space here too much) that this is what I love so much about you: that yesterday you wrote a gut splittingly funny post and today you’re just making the tears flow. That you can do both so well, and powerfully and full of real is just …. awesome. And then while I was trying to go back to yesterday’s post I somehow landed in your “Apologia” post from May (because I’m a techno-weenie and get lost sometimes with the navigation stuff) and got blown away once again by about a million things you said in there that I have also thought. And I discovered we have something else in common, because I wrote this about my Dad: “My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.”

    I have only been blogging a very short while (6 months!) and yet keep finding “my people” in such a profound way here. I can’t believe I didn’t figure this out sooner, because as my hubs has said “honey, you were made for this shit.”

    So at the risk of sounding all sappy and shit (and I haven’t been drinking I swear) I am falling in cyber-puppy-love with you and your raw honest amazingly beautiful writing. OK, putting myself to bed now.
    Varda recently posted..The BlogHer10 reflections of a very slow newbie blogger

    • Wow. Thank you!

      First? Never worry about hogging comment space. I’m all good with long comments so go for it!

      Apologia is one of my favorite posts, so I’m glad, if you were going to get lost, that you got lost there. Because I really, really do believe that, that sharing truth is powerful. And I so know what you mean about finding your people! I mean, it’s a whole world here in the computer, and it’s filled with stories and words and it has changed my life. No hyperbole.

      Thanks for your kind words about my writing! I don’t feel nearly as confident with the funny stuff as I do with the serious stuff, but I’m enjoying it.

      Cyber puppy love? I’m in!

  • I’m crying too, Adrienne, with mixed emotions. You did an incredible job conveying what it feels like to live with mental illness. Carter sounds like an exceptional kid. I wish I could meet him. Why are my emotions mixed? I’m so happy that Carter’s in an “up” phase, but I’m all too familiar with the ups and downs. Also, it’s good to see someone who understands that Carter’s illness affects the entire family dynamic. If you’re a family, you are truly in it together. Here are the sentences that echo in my heart:

    Happiness.

    I expect catastrophe. This is me, telling you that I am trying to learn to expect nothing, to walk around on the ground grateful for the many gifts and unsurprised by the many pains.

    It is what it is. It can never be anything else.
    Emily recently posted..Why a Mental Disorder Is Not the End of Your Story

    • Thanks, Emily.

      So true; mental illness will try to suck all the life out of every person it can find. It bends and warps people and relationships in very powerful ways. We’ve struggled with so many things, but one of those is to remain a family, led by two adult parents and not an illness.

      And yeah, the crisis will come. We both know that it will be back. So often, I’ve wasted the good times because I’m consumed with the crap that I’m sure is around every corner, so I’m breathing and praying and trying to be here, now, with these people in this place. Happy.

  • Lovely Adrienne… Lovely post!

    Also? It is wonderful to read these words and feel uplifted FOR you. If I can feel it just by reading the words, I can only imagine what you felt writing them! Today? I am grinning ear to ear for you!

    Congrats! On your progress, on Carter’s progress… On dealing!
    Heidi-D recently posted..Wordless Wednesday – Elisabeth

  • Going back to bed and being late for school sounds like the smartest plan yet…
    Alexandra recently posted..Historys Longest Post- But I Promise You A Point

  • I’m so happy for you. I hope nothing but the best for you guys.

    But you know that.

    I really hope things keep going really well.

  • That tremendous love that you have for Carter is so beautifully woven through this post, Adrienne.

    I am so happy for your family. I’m proud of you…I’m proud of Carter.

    And I’m wishing for continual movement in this positive direction. Such beautiful progress.

  • CDG

    You inspire such love and wonder and joy!

    I’m so happy for Carter!
    CDG recently posted..Switching the Points- Wordless Wednesday

  • tears. i’ve got ’em. for you. happy, happy tears.

  • It is so funny that you can just be meandering your way about through the twisty halls of the internet and come across something so moving that you feel absolute joy for someone you don’t know at all, whose blog you’ve only read just now. This is the most beautiful and real thing I’ve read in a long time.
    themombshell recently posted..Im going to need Jeff as my interventionist

  • NTE

    I feel privileged to have wandered into this very special – and private – moment. Thank you for sharing it will all of us. You are a woman who is living her life: you are, as they like to say “all in”. which is a lot harder than it sounds, so I just wanted to thank you for sharing it with us all. I hope that things continue to go calmly, and that you are all as well as possible.

  • I cannot begin to imagine what it’s like to go through the list you spelled out under “In the past 20 months” but I know one thing for sure: Carter can be very proud indeed. He’s got himself a strong, grounded, determined and obviously loving momma.
    Thrilled to read about the progress, praying that the momentum keeps your family in the quiet zone for a little while. Or always, whichever you prefer 🙂
    Maryline recently posted..Run no matter what

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