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

Autism Awareness, Awards, and Progress

Today, on World Autism Awareness Day, I think about the progress that my little boy has made. While he does not have an official diagnosis of autism, he’s next to it – spectrumy – with speech and language challenges, sensory and OCD issues, and overall motor skills and motor planning delays. Honestly, just 12 months ago, I was 100% convinced that he is autistic. Today, though, while he continues to exhibit many of the same characteristics, he has made so much progress that I question.

I know that Tucker will have lifelong challenges. I know that speech and pronunciation will likely always be hard for him.

I also know that just three years ago, he wasn’t really talking and that today, he’s creating elaborate conversations between his Minions and his Lego Stormtroopers. That some of the conversation may be hard for anybody other than the two of us to understand is beside the point. The point is that three years ago, the word water was pronounced “ah.” Not to be confused with “hah” which was helicopter.

He’s come so so far. Sometimes, it breaks my heart to see his struggles. But then, I see his triumphs and his milestones and that while I miss tiny him, I am so proud of then him and now him.

The following is something that I wrote almost two years ago. At the time, when Tucker became frustrated or angry, he lost the few words that he had and went into a place inside of himself. He lashed out and was hard to reach. Today, this behavior is not completely gone, but it is mostly gone. You guys, the progress. It’s amazing.

(if you have a child who exhibits signs of autism, speech delay, OCD, or sensory processing problems, PLEASE contact Early Intervention, your school’s special ed program, a developmental pediatrician – please – it works, I promise)

VOTY 2014 Kristi Campbell Voices of the Year Award BlogHer - Finding Ninee

I won the People’s Choice Award from BlogHer’s Voices of the Year contest (that’s me, kissing my sign above) for the following and thought it was appropriate to share it again today, on world autism awareness day and for the Finish the Sentence Friday prompt of “I once won an award for…”

***

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?

Autism and developmental delays please just play my game the way I want to by Finding Ninee

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? I do, and I’m in my 40’s.

Tucker Dec 2012This has been a Finish the Sentence Friday post, where writers and bloggers gather to share their own takes on a particular sentence. This week’s was “I once won an award for…”
Interested in joining? Come to our Facebook Group!
This week’s hosts:
Me (Kristi from Finding Ninee)
and your cohosts:
Allie Smith of The Latchkey Mom (and this week’s sentence thinker upper) and Allison Carter of Go Dansker Mom.
Also, look – it’s like I’m in an Allie sandwich! How cool is that?? Wait. Is that weird.

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  • Emily - This is one of my favorite posts of yours and you SO SO SO deserved that award for it! I may have made this comment last time, but the way you are able to show us how T may be feeling or thinking is incredible and truly insightful. Thanks for sharing it again and most especially today – how perfectly appropriate!April 2, 2015 – 10:07 pmReplyCancel

    • Kristi Campbell - Thank you Emily!! Of course, I’m guessing really based on his behavior but I think it’s pretty close to how it’s been for him at times for sure. And thank you!!!April 4, 2015 – 3:29 pmReplyCancel

  • Sarah - How did I miss this post before? It’s perfect, absolutely perfect. And, yes, you could definitely be describing what’s going in my head at times.April 2, 2015 – 10:26 pmReplyCancel

    • Kristi Campbell - Maybe something that happens in all of our heads Sarah? And maybe it’s before we knew each other?? I think I posted it in August 2013 so possible.April 4, 2015 – 3:32 pmReplyCancel

  • Allison carter - Yes, perfect.

    Perfect.April 2, 2015 – 11:22 pmReplyCancel

  • Janine Huldie - OK now I am crying and you most definitely deserved an award for this and just so much more, KristiApril 3, 2015 – 2:03 amReplyCancel

  • Kelly McKenzie - Oh Kristi. This is the first time I’ve read this and I am bowled over. But in a good way. T has such a wonderful advocate in you. There could be no better.April 3, 2015 – 6:47 amReplyCancel

  • Sandy Ramsey - That post is still so incredible, Kristi. It has been amazing watching Tucker grow and make fantastic strides. Thank you for sharing the hugeness of those moments with us. You are a fabulous mom and a beautiful human! Love you! XXApril 3, 2015 – 8:22 amReplyCancel

    • Kristi Campbell - Thank you Sandy! You are a beautiful human and an awesome mom <3 So much love back to you, friend!April 4, 2015 – 3:43 pmReplyCancel

  • Allie - Just like the first time, you took my breath away. And you so deserved the award for this. Even twelve years into out journey, I need this. I need the reminder. A reminder that yes, progress is made, but also, breaks are still needed. By mommy and son. Love this, you and your sweet, miraculous boy!April 3, 2015 – 8:31 amReplyCancel

    • Kristi Campbell - Here’s to remembering that our kiddos need breaks and that we do, too, sometimes! Love to you, Sweets!!April 4, 2015 – 3:50 pmReplyCancel

  • Kim - I loved reading this from Tucker’s point of view!!! I think that lots of us could do well to remember to breath and recognize the mad before it takes over – at least I know I have had times when I failed this and needed some sort of system.
    Your son has so much joy and so much to teach all of us!!!April 3, 2015 – 12:36 pmReplyCancel

    • Kristi Campbell - Thanks Kim and you’re right – we can all learn to breathe through the anger!! And I agree of course that Tucker has so much joy and such amazing lessons for us. <3April 4, 2015 – 4:03 pmReplyCancel

  • Elizabeth - Loved this the first time I read it, still love it. Consider it shared my dear!April 3, 2015 – 1:26 pmReplyCancel

  • Anna Fitfunner - Kristi, I loved that post the first time that I read, and I’m loving on it again. Tucker really has come so far, and I send out praise for your husband and you, who have stuck it out with that darling boy. Many, many kids with autism can get better over time. Not “cured” (whatever that means) necessarily, but better so that they can participate and find joy in the world around them. Thanks for keying into National Autism Day, as well. Raising awareness means a lot to our community!April 3, 2015 – 6:38 pmReplyCancel

  • Roshni AaMom - This was an amazing piece because it gives one a firsthand insight that very few articles have been able to give of what it REALLY feels like!! Such a well deserved award, Kristi! 🙂April 3, 2015 – 8:51 pmReplyCancel

  • Dana - I love this post – isn’t this the one you read at Blog U? I’m glad you are sharing it again. I feel lucky to be able to witness Tucker’s growth over the past few years, and I look forward to meeting him in person. Over the summer, maybe?April 4, 2015 – 12:11 pmReplyCancel

    • Kristi Campbell - Hey Dana,
      Yeah it’s the one I read at BlogU. And I’d LOVE to have Tucker meet you and your kids this summer and be able to meet them myself! (yours, I mean, obviously) Yes!
      Happy Passover, Friend!April 4, 2015 – 4:05 pmReplyCancel

  • TheMomCafe.com - This is one of my favorite posts, so I’m SO glad you shard it again Kristi. Especially in reflecting on your sweet boy and how far he has come and honoring Autism Awareness. <3April 4, 2015 – 5:30 pmReplyCancel

  • My Inner Chick - CONGRATSSSSSSSS on the ***People’s Choice Award ***!!!!

    You. Deserve. It. Darling.

    …because your VOICE lifts & transforms & inspires. xxxxxxApril 5, 2015 – 1:53 amReplyCancel

  • Tamara - Loved the post last summer and I love it now!
    And I’d like to meet Tucker this summer too!
    Happy Easter!April 5, 2015 – 2:56 pmReplyCancel

    • Kristi Campbell - I so hope you’ll meet Tucker this summer and that I’ll meet Scar and Des. SO SO much.April 7, 2015 – 11:37 pmReplyCancel

  • Sara - Love this (both times!) T-Man HAS come a long way! ….and really, I think we all need “A Break” sometimes. There are adults I’ve met who could use a “HANDS” reminder every now and again. ….and I’m reluctant to admit how frequently I’d like to hide under my chair (or desk) to regroup. Huge hugs to you & Tucker.April 6, 2015 – 6:06 pmReplyCancel

    • Kristi Campbell - Love YOU for reading this (both times) and we so need a fucking break sometimes. All of us. Here’s to bigger chairs or floors that swallow us.April 7, 2015 – 11:38 pmReplyCancel

  • K - Kristi…I loved that post when I first read it and I love it today. You deserve that award 110 percent.

    Yesterday evening, I attended a talk given by a man who has Asperger’s (he wrote Look Me in the Eye) and he shared many similar sentiments…those feelings of being overwhelmed and frustrated and of playing in a world that was beyond the understanding of the other kids. He called it his world of “tigers and elephants,” and he said it took him until he was an adult to realize that his world, his tigers and elephants, were different than everyone else’s. Not worse…just different. His. Unique. 🙂

    Love this post. Love you.April 7, 2015 – 11:20 amReplyCancel

    • Kristi Campbell - Sweets! I’ve been thinking about you and wondering how almost end of year is going for you. I wish I’d attended the same talk – that sounds amazing. I so hope that it doesn’t take Tucker until he’s an adult but if it does, I think that’s maybe okay too. I mean, it takes being solo to have wings, right? And Huge love for you my sweet friend. Always.April 7, 2015 – 11:40 pmReplyCancel

  • Stacey - >> 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? <<

    Holy crap, this is so my son (who, like Tucker, is spectrumy but not enough to be on the spectrum; he instead has SPD). My Thomas has a lot of issues getting other kids to play with him. His teacher and I discussed it and she thinks it has to do with his speech (again, like Tucker, Thomas was a late speaker, lost the few words he said, has articulation issues, and possibly Apraxia) and that the other kids don't want to take the time to wait for my kid to spit his words out. I think it's more that he wants to play a certain game a certain way and he doesn't understand that other kids don't always like to do that. Either way, it's frustrating and saddening knowing my son struggles. He's doing better in the play area at school, but if we go to the park and there are other kids, 9 times out of 10 he either wants to go home or he plays by himself. : It sucks. He doesn't. He's awesome. Frustrating at times, but awesome. 🙂April 8, 2015 – 4:51 pmReplyCancel

    • Kristi Campbell - Wow Stacey,
      Thank you so much for commenting. It’s always so heart-warming to realize that there are kids who are so so similar to Tucker when it comes to speech and who are spectrumy but not enough to actually be there. I really appreciate you taking the time to share and I love your last words. It sucks. He doesn’t. He’s awesome. YES!April 9, 2015 – 11:15 amReplyCancel

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