Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Sometimes, I’m not myself. By my maybe-autistic son. Sortof.

As he gets older, some of Tucker’s issues are more identifiable. Things that, when he was a baby, were totally unknown in the way that all things baby are a little bit unknown, have become more recognizable as actual behaviors. Part of what we’ve learned about ABA (applied behavior analysis) therapy is that to correct undesirable behaviors, and to reinforce desirable ones, we need to first attempt to identify the antecedents in order to understand what’s setting him off. Then, we can base our reactions on whether we want him to continue each particular behavior or discontinue it.

Basically, what this means is that while Tucker’s pretty much always ground his teeth, we now know that him doing so is an attempt to self-regulate. He’s getting stressed out and if we don’t intervene, his stress level will likely escalate and possibly get ugly.  It’s heartbreaking.

Sometimes, we’re not able to recognize the early signs of stress and Tucker goes to an angry, anxious place inside of himself.

He becomes not so much himself. The following is how I imagine it to be, inside my little boy’s head, during these moments.

I’m having so much fun! I’m on the playground and see magic connected climb-through boxes that are going to become a house and an airplane at the same time. They will make me invisible until I laugh. When I laugh is when I’m not invisible anymore, so that Mommy can find me.

Today, I brought my favorite toy ninees to the playground.  I’m flying them up up up. So high, so fast.

Vroooom.

I love ninees and that’s why I carried some all the way to the playground. Everything is lined up perfectly when my favorites are together – the playground, my ninees, my best friend, and my mommy.  Oh. I know they’re called airplanes now. But sometimes, when I’m excited, I still say ninees. Sometimes, something happens in my mouth when my brain talks to it, and when my mouth wants to talk to you, the words get broken on the way out.

But that’s not what makes me sometimes not myself.

I love the playground. I get an idea in my head on what exactly perfectly the-way-it’s-supposed-to-be fun looks like. Sometimes, the supposed to bes don’t happen.

On the playground is when I am doing magic, and flying, and it’s my turn next (I waited for my turn) but then, my friend took my airplane out of my hand and ran away with it.  I don’t want him to do that. I don’t want him to do that, because I was just getting ready to do a fly circle-stunt in the air, and now my friend has my plane, and he’s running, and I have to get it.

Mad. But not that mad.

Then, he does it again, and I already said “NO” and “stopit,” which is what my teacher and my mom say when I’m supposed to Be Gentle and Be Nice and Keep My Hands To Self. I did. I kept my hands to myself and I said “Sorry, Friend” after I almost was going to hit him. I didn’t hit him. I stopped it.

My friend has a different game in his head than the game that I have in my head. My game, in my head, is better and why can’t he see that my game is more fun and that he’s ruining everything? He just took my airplane again. And he’s running with it.

I can feel in my body that I’m mad and that I need to keep HANDS to self but I’m mad and running and why can’t my friend see that my game is more fun?

It’s. Not. Chase. Time. It’snotchasetimeandI’mgettingMADandMADDER.

My friend is not taking turns and it’s pissing me off that another kid is making tooloud baby crying sounds and can’t he just stop it and when I used my words to say STOP IT like they taught me to, he didn’t stop it.  It’s all tooloud too loud and why won’t he stop it? I want him to STOP IT STOP IT STOP IT. Nobody is making him stop it and I still want to play my game. I can feel in my body that I want to make them stop it and I can feel in my head.  There is noise that is happening in my head and that noise makes my broken words even more broken.

I don’t like the feeling in my body and I don’t like the feeling in my head but I don’t know how to stop it. It sounds like

CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH

It becomes white and red and black in my brain and that static noise in my ears…

…and I can’t hear and I can’t think and I just want to play with my ninees the way I WANT TO PLAY with them and this is terrible and I just want to go home and you suck. And this is in my head and my ears and my eyes and my mouth is broken and I can’t say stopit any more and I can’t say anything and all I know is

CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH

That’s all I know and…

“HANDS!”

CHSHH(hands?)HKKCHURHKURCCHHHH

…and…

CHShh(Tucker!)HKKchurhkurccHHhh

And then I am sad because I was maybe-bad and I didn’t keep my handstoself…and I’m crying…and I hear

CHShHHH(deepbreaths)hkKCHURHkurcchhhh…hhh…hhh…

Yes. (deep breaths)

I didn’t mean to hit my friend. Can we still play?  I’m sorry. Here. I’ll stroke your head to show you I’m sorry. Can we still play? But don’t take my ninee. That’s bad.

I still want to play and I want Mommy to know that I want to listen, even when I can’t because of CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH.

Sometimes, I can make it go away myself. If I tighten my mouth and my shoulders and my face and my eyes and my hair, sometimes it goes away. But sometimes, it comes even when I don’t want it to and my broken mouth is brokener. That’s when Mommy has to tell me “HANDS!!!”

Then, I am calm. After the crying, and the knowing, I am. Calm.

But Mommy sometimes isn’t.  Because Other Mommies look at My Mommy like she is bad and she is not bad, she is just breaking through the CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH.

Sometimes, then Mommy gets sad and I tell her I want to go home because I want to go home and I just want to go home because I am done.

I’m learning. I’m learning to ask for A Break. And to Take Deep Breaths. And that Hitting Friends is Notnice.

And that’s when, me, Tu-uck is sometimes mostly not myself. But not on purpose, and not because.

When are you not yourself?  Do you sometimes need a break, hiding under a chair to get your hair back to not feeling like static CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH?

Tucker Dec 2012

This has been a Finish the Sentence Friday post. Today’s sentence is “I wasn’t really myself when I…” Come join us and play! Next week’s sentence is “If I had a magic wand, the first thing I’d do is…”
Janine: Janine’s Confessions of a Mommyaholic
Kate: Can I get another bottle of whine?
Stephanie: Mommy, for Real
Me: Finding Ninee

 

 


by Kristi Campbell

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  • Janine Huldie - Oh I think we all need a break sometimes Kristi and can tell you that I know my girls have their moments, too. Trust me and even tonight, Emma had a meltdown when Lily took one of her toys. I know it may not totally be the same, but believe me when I say I do deal with what sounds quite similar to me with both my girls, too often enough.August 22, 2013 – 10:10 pmReplyCancel

  • Sarah | LeftBrainBuddha - Oh, Kristi, you never cease to amaze me with your powerful writing about your son. Reading this made me think about what must go through my children’s minds when they get frustrated and are trying to remember all of the rules and how to behave…. I think if we all could think about what the world looks like and how it gets processed in our children’s minds, whether they have special needs or not, we would understand their behavior so much better. This is powerful.August 22, 2013 – 10:11 pmReplyCancel

  • Rachel - That you imagine your son’s world so vividly makes you a beautiful mommy. He is so lucky to have a mom who seeks to understand him so. Just as we are lucky to have a window into his world as well as other children like him from you, his beautiful mommy.August 22, 2013 – 10:11 pmReplyCancel

  • Jean - This is important. I hope you get a zillion hits on this post.August 22, 2013 – 10:20 pmReplyCancel

  • Dana - Have you read Nobody, Nowhere by Donna Williams? This post reminded me of her book. She is a woman with autism who wrote about what it was like, and it is amazing. As is this post. You need to print it out and show it to Tucker’s teachers when he starts elementary school, and paraphrase it to his classmates so they can better understand where he is coming from. I wish Tucker could read this and know how much his mommy loves him and gets him. Although I know he doesn’t need to read it to know this.August 22, 2013 – 10:26 pmReplyCancel

  • Sarah Almond - If we only could really get into their little heads and understand what is going on! I think that you are most likely spot on-a great post Kristi!August 22, 2013 – 10:27 pmReplyCancel

  • Kenya G. Johnson - Wow Kristi – excellent – you drew me in and I was there!!! This was perfectly illustrated without a picture. I so felt every moment for both of you. I think I held my breath.August 22, 2013 – 10:46 pmReplyCancel

  • Emily - You show such incredible insight to what Tucker likely feels like. He is so fortunate to have such an awesome mom who is so attuned to him. I love how you wrote about this topic!August 22, 2013 – 10:47 pmReplyCancel

  • JenKehl - Kristi- this is amazing and wonderful and perfect. To be able to understand so well what is going on inside Tucker’s head, it’s like it was really him talking. I know how you feel so much. Today Isaiah wouldn’t shake a woman’s hand because he said it was “unsanitary” and I was so embarrassed I had to leave. I didn’t want him to feel bad, but how can you explain?
    You are amazing. TTTx10August 22, 2013 – 10:54 pmReplyCancel

  • Stephanie @ Mommy, for Real. - That. Was. Amazing. Apparently you should always write these posts at the last minute, because that took my breath away. I want everyone I know to read this. I think it is incredible that you climbed into his head that way and gave him the words to share with all of us what he is going through. You are an awesome mom. Like, the best. Do you have any idea how lucky your son is to have someone like you? Who cares so much, tries so hard, and is so freakin’ gifted? I can’t believe you just wrote this.August 22, 2013 – 11:00 pmReplyCancel

  • Kristi Campbell - Janine,
    maybe it’s the same with all kids. At least how it feels to moms, anyway. I wish the inside-head stuff were easier for Tucker, though…
    —
    Sarah,
    i wonder too. I really wanted this to be more of a glimpse into Tucker’s head but on the third draft, I just was mucking it up worse. Thanks, friend.
    —
    Rachel,
    Thank you. I wish I knew more.
    —
    Jean,
    Aw. Thanks, you. Me, too. But doubtful.
    —August 22, 2013 – 11:33 pmReplyCancel

  • Kristi Campbell - Dana,
    I haven’t actually read that but I’ve written it down and THANK YOU for letting me know about it. A friend of mine (the mom of the friend of Tucker’s in this post) just read Ido in Autismland but I haven’t read that yet either. I think (???) it may be the same thing. If not, a glimpse into the mind of somebody with autism, anyway…
    —
    Sarah,
    I wish we could get into their little heads, too. So much.
    —
    Kenya,
    I kept looking for pictures but the happy ones and the crying ones – none made perfect sense. Thank you for getting it anyway!
    —August 22, 2013 – 11:40 pmReplyCancel

  • Kristi Campbell - Emily,
    I hope so. I try to know what he feels like. I wish I actually knew. Every time I read this, i want to change it. So thank you…
    —
    Jen,
    That woman’s hand probably WAS unsanitary. Never underestimate the power of the words of our kids. Ever. Who know. Maybe she just wiped her ass without TP. He might have been right.
    —
    Stephanie,
    I can’t believe that you are as awesome as you are. Because. You are awesome, and thank you. And I’ll probably edit it a thousand times more. Or not. ‘Cause should but busy…
    —August 22, 2013 – 11:50 pmReplyCancel

  • Deb @ Urban Moo Cow - {bawling}
    (again)
    that is all. xoAugust 23, 2013 – 12:23 amReplyCancel

  • Shay - Oh, Kristi, this is heartbreaking, and I’m pretty sure only moms can understand it–although I hate when people say things like that, because it’s so condescending to women who aren’t moms. But I just know from my own experience before having kids that I thought kids who had meltdowns were just “spoiled” or not disciplined, or blah, blah, blah. Now, though, after having kids, when I see this happen to any little boy or girl, I feel so bad. This was such a great post, and it really touched me. I know that sounds so bullshitty, like I’m just saying that, but I’m serious. I’ve seen this happen so many times with so many kids, my own or not my own. And it just hurts my heart. 🙁August 23, 2013 – 12:24 amReplyCancel

  • Kristi Campbell - Deb,
    Sorry. Again. And all of the agains to come.
    —
    Shay,
    Life changes when we have kids. I thought the same blahblahblahblahblah when it came to my friends, before me, too..
    And thank you.
    Thank you for getting it.
    —August 23, 2013 – 12:46 amReplyCancel

  • K - I love this post so much. Your insight is incredible…you are incredible…Tucker is incredible…thank you. I hope that Tucker gets to read this post someday because it serves as a reminder of just how amazing both of you are. When I read this post, my heart breaks just thinking about all of the mommies who stare and judge and just don’t understand…and I feel for Tucker, too, and the words that are broken and just won’t come out. And yet I love how this post captures his beautiful spirit beneath it all, beneath those broken words and confused feelings. The whole world needs to read your blog. Thank you. xoxoxoAugust 23, 2013 – 12:58 amReplyCancel

  • karen - Kristi you are an awesome mom for totally understanding what Tucker is thinking/feeling and what he goes through.

    I try to think about what Dino wants/needs when he is having a meltdown or try to deal with it before it happens…which is kind of impossible!August 23, 2013 – 6:45 amReplyCancel

  • Kerri - This is what makes you such an awesome mom. The fact that you can get inside Tuck’s head and imagine just what he is struggling with. How he sees, hears and understands and tries so hard. Not just for you, but for himself.

    Adore you and love this post.August 23, 2013 – 8:10 amReplyCancel

  • Linda Roy - Kristi, you are so insightful and I love the way you write. That kind of understanding and insight into what Tucker must be thinking is awesome.August 23, 2013 – 9:28 amReplyCancel

  • Chris at Hye Thyme Cafe - Just thinking that whole thing through is exhausting, never mind living it! Must be sooooooo frustrating! 🙁August 23, 2013 – 10:07 amReplyCancel

  • Lisa @ Golden Spoons - Kristi this is all kinds of AWESOME!!! I used to teach kids with all kinds of different special needs and so many times I wondered what exactly was happening inside the beautiful minds. You expressed it so perfectly. I could completely feel his angst building and then calming. I love it and I hope many, many people read it because I think it would help us all understand better which would make the world a better place for everyone!August 23, 2013 – 10:24 amReplyCancel

  • Tamara - Maybe we all have different games in our head, and that’s part of the problem. You are so astute to get in there like that. What writing! I’m sorry Tucker gets so frustrated/scared/angry/everything when his games don’t turn out a certain way.
    I had to read this no less than three times today.August 23, 2013 – 10:25 amReplyCancel

  • Katia - I am speechless. This was the best thing you ever wrote and one of the best, most powerful and touching posts I’ve ever read. You are so talented as a writer and so wonderful as a mom.August 23, 2013 – 12:39 pmReplyCancel

  • Sandra Sallin - Wow, you really were able to get me into Tucker’s head. It was very enlightening. It’s a wonderful post and more mother’s should be able to read it. This is for mother’s of special needs kids or not. It gives us all insight. Thank you. Brilliant.August 23, 2013 – 1:34 pmReplyCancel

  • Lisa - Wow. You really get inside of Tucker’s head and I bet you’re pretty spot on about what goes on in there. It must be incredibly powerful for Tucker to feel understood and acknowledged by you, his mom. Surely it is difficult to navigate for you, but from this and other posts of yours I’ve read, you clearly have a gift for mothering.August 23, 2013 – 1:37 pmReplyCancel

  • Janet - Amazingly well said. You’re a fantastic writer. I can’t imagine not being able to get your body and voice to do what you wish they would. My little Chris has the same struggles.August 23, 2013 – 2:02 pmReplyCancel

  • Jessica - Your poor little guy. 🙁 But at least he has the best mom ever. That is true empathy!August 23, 2013 – 4:51 pmReplyCancel

  • Considerer - This is amazing. You’re incredible. I totally felt it with him. Well done you for sticking with it and helping him to learn to regulate.

    And if ANY of those Moms look dirt at you, I’m’a come over and pound on them. How very dare they.

    You totally rock.August 23, 2013 – 5:09 pmReplyCancel

  • Stephanie @ Life, Unexpectedly - Tucker seems such a great little guy, no matter what. It is the same with all kids I guess. With “normal” ones it’s mostly easier to guide their actions, but there is still the phase when they just cannot understand the big picture, or a little thing is suddenly big drama. I’m glad you are so good parents to Tucker!August 23, 2013 – 6:53 pmReplyCancel

  • Sara - Wow, such a visceral post. I felt it and tensed right there with you (him) and then released with deep breaths when it was ok to breathe again. You are clearly Queen of the Land of Empathy. All hail the queen. You are a beautiful mommy.

    …and btw, I’m still learning to ask for A Break. Sometimes we know better but our intellectual selves doesn’t sync up with our emotional selves, our thinking selves don’t sync up with our acting selves. If 40+ yr olds still struggle with it, is it any wonder that 4-yr-olds do??August 23, 2013 – 7:19 pmReplyCancel

  • Seriously Kate - This is such a moving post – it truly touched my heart. Thank you for sharing it!

    KateAugust 23, 2013 – 10:07 pmReplyCancel

  • GirlieOnTheEdge - Blogging. Is. A. Powerful. Tool.
    Cathartic, educational, mobilizing.
    It’s a tool that connects, ties and joins people who, before the advent of the internet, might otherwise have never met.
    Much to my regret, I do not have children. But I’ve been around them enough to know that in essence what you’ve written here sounds in one way what all kids struggle with as they are growing. Learning appropriate behavior(s) and the “right” way to navigate their little, young lives. Everything is new them – how to play, how to deal with other kids who aren’t so nice, whose parents didn’t put much into teaching them “how to act”.
    You have extra challenges a lot of moms don’t Kristi, but it’s abundantly clear Tucker is a very lucky boy to have you as his mom ( )August 24, 2013 – 8:13 amReplyCancel

  • Natalie DeYoung - You are a very talented storyteller. The way you captured the experience of your son’s mind is very powerful.August 24, 2013 – 11:31 amReplyCancel

  • Lori Lavender Luz - Oh, my. Blessed is the person who has someone to understand him so completely. And to even TRY to.

    Blown. Away.August 24, 2013 – 8:37 pmReplyCancel

  • Lanaya | Raising Reagan - I know all about the breaks mama … I am currently on a sabbatical from my own three year old. While it is so hard being away from her I also know why we need our time to ourselves.
    Your son is so lucky to have you as a mother. You are truly amazing!

    ¤´¨)
    ¸.•*´
    (¸¤ Lanaya | xoxo
    Raising-Reagan.comAugust 24, 2013 – 9:42 pmReplyCancel

  • Carol - Love Dexter - Wow… I can imagine that this is exactly what’s going on inside the heads of kids, like Tucker. What a great sense of fun Tucker must have. Insightful!! Thanks!August 25, 2013 – 7:27 amReplyCancel

  • Jamie@southmainmuse - You painted such a vivid picture into your son’s emotions. Sometimes I feel like throwing a major tantrum too — especially when life gets overwhelming.August 25, 2013 – 7:12 pmReplyCancel

  • SocialButterflyMom - Kristi- this is one of my favorite posts of yours. How one doesn’t have empathy after reading this is beyond me.August 27, 2013 – 8:12 amReplyCancel

  • MJM - That was awesome. Very deep and insightful. It’s amazing the things we take for granted, and never think about until someone brings it to our attention. Thanks for sharing.August 29, 2013 – 11:58 pmReplyCancel

  • Annemarie - Loved reading this, amazing!!August 31, 2013 – 10:18 amReplyCancel

  • Cyndi - This is an amazing post. I love what you did – putting it in Tucker’s perspective.
    You’re amazing. The things you do as a mom are fabulous and I’m so glad that you’re writing about it – to educate and help everyone understand, but also because I know it’s good for the soul to do so. HUGSSeptember 1, 2013 – 12:01 pmReplyCancel

  • Roshni - This is the best ever insight I’ve read about!! Thank you for sharing!!May 7, 2014 – 7:30 pmReplyCancel

  • Joy @ icansaymama - I just read this, Kristi, it is a very powerful piece and I can totally understand why you got an award for it! Love you for this!August 14, 2014 – 2:19 pmReplyCancel

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