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

It Wasn’t Autism, Until it Was and Then Wasn’t

Caillou’s whines bounced around the room’s lemony light the morning I tried to figure out whether my two-year-old was deaf. I muted the TV mid-sentence, and watched. Did he notice?  

He was wearing my favorite outfit. Blue shorts and a white polo with rugby stripes along the chest.

He wasn’t bald any longer like Caillou, but his hair was wispy. Still brief on his head.

I set the remote on the sofa, and stood to his side. Loudly clapped my hands behind him. Nothing. No change in his silly little grin.

***

I was sure it wasn’t autism until I was sure it was.

For the first year of Preschool Autism Class (PAC), I drove him, unwilling to take advantage of the short bus that was happy to come to our door each morning. He was too little, too innocent.

I worried about the drivers and other students. The seatbelt-less seats.

About the bus rumbling away from home. From me. About him, rumbling away from me as I felt less-than perfect.

Back then, I grieved the fact we weren’t attending a Co-Op Montessori class the way I thought we’d be.

It was a year before he rode the bus, and on that first morning, I put my heart in his pocket and a noise-activated recording device in his backpack.

Later, him safe and home, I tried to listen and couldn’t understand enough of the noises to make sense of anything, much less his day.

I felt ashamed for not trusting in the first place, except how could a mama trust sending her baby to school while he still needed naps and asked for water by saying “ah?”

How could that mama not send a noise-activated recording device along with her baby?

I did send it again, every now and then but never got much more from it than I did from him.

Even once he’d found some words, “How was your day?” was met with the same silly little grin, while wispy hair grew thicker. His teachers met us, in the parking lot. Those of us who drove. 

They walked them in, and he went.

baby with backpackI did trust them. Not the bus at first, but the teachers. The ones who came to our home soon after the lemony light morning of Caillou and my home hearing test.

“It’s not autism,” I said.

“Doesn’t matter,” Mrs. M replied. “It’s what program matters. For him. You want him to talk, right?”

“I do,” I said. Blinked back tears. Dared to imagine that one day, I’d hear “water” instead of “ah.” That one day, I’d hear “I love you.”

And so, Preschool Autism Class (PAC). Eventually, a PAC graduation ceremony.

Later, we found grace in kindergarten.  

***

I was sure it wasn’t autism until I was sure it was. And then, I wasn’t sure.

Today, it’s probably not autism, but something like it.

Something like a lot of things. A lot of kids.

He cannot have tags in his underpants.

He brushes his teeth with only water, and has a hard time with social cues, volume control, modeling, and reminds me of bottle-drinking-baby-him while he twirls his hair round and round and round his finger.

This week, the knot in his too-long hair (he wants a man-bun like some YouTuber he knows) was addressed by him. With scissors.

Usually, he asks me to help but newfound independence with my words of “your hair, your choice” means his hair is past his neck in the back. Until this week. Today, he has an Alfalfa sprout, right at his crown.

“I used the scissors,” he said.

He cut the knot out, himself.

“UGH,” I think. I remember cutting my own bangs. How I hid them by cutting them to my scalp.

He bounds down the stairs with this sprout.

I don’t even care. Maybe, it’s an excuse for a soon haircut?

His hair, his choice.

And mostly? I just felt thankful that he has words.  

I even kinda like that he wants a man bun, and that his crazy hair looks more like this than the little boy I pictured at seven-years-old.

This has been a Finish the Sentence Friday post. This week’s sentence is “I don’t want to write about…”

In hindsight, this is an insanely stupid sentence as pretty much everything I don’t want to write about will never appear here in this tiny corner of the webs of the internets. Except, maybe, I do want to write about Tucker and his progress, except I don’t want to write about Tucker and his progress.

That’s an essay for another day. Maybe. If, you know, I feel like writing about it and all that.

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  • Emily - We went through this too — still do, because Big Dude doesn’t “fit” under a label. Speaking of labels, I’ve always had a hard time with them, because to me, they mean “stigma” even though they really don’t and shouldn’t. But, I also learned that if you want your child to receive certain services in school, then you need those labels, even though you dislike those labels and even though your child doesn’t really fit under any of those labels. We finally got to a point in Big dude’s schooling where he didn’t need any support and therefore he was “declassified.” So, what did I learn? Hold on to the labels until you don’t need them anymore. 🙂May 18, 2017 – 10:13 pmReplyCancel

    • Kristi Campbell - I know what you mean about the stigma, Emily. I feel that way as well although it’d sometimes be easier to have a label to explain what’s going on. And yeah, the school thing gets more complicated. Tucker’s only seven and so far, so good with the general for services, but still. Thanks!May 19, 2017 – 10:02 pmReplyCancel

  • Lisa @ The Meaning of Me - Well done, my beautiful friend. Well done.
    You know, as far as we’ve come, I still wish I could keep my girl home with me all the time. Until I remember that it wouldn’t be good for either of us in the long run. And oh how I wish I could send a recording thing with her, just to know is she OK? Happy? Getting along with people or being bullied? Ugh.
    But gosh look how they’ve grown…and look how awesome they (and we) are. No matter what we do or don’t write about. xoMay 18, 2017 – 10:23 pmReplyCancel

    • Kristi Campbell - Thank you so so much!! I sometimes wish I could keep Tucker home with me too but honestly, that would be too much. For both of us, you know? I’d totally send a recording thing with him still if I didn’t know his backpack is in a cubby on the other side of the room. I never got great recordings anyway… And yeah, they are awesome. We are, too. xoMay 19, 2017 – 10:03 pmReplyCancel

  • Dana - First, I love this look back at Tucker’s journey, and yours. I love knowing that I have known you since before kindergarten, and that through your eyes and words, I’ve had the privilege of watching Tucker grow and thrive.

    Second, I get the not wanting to write about stuff. But then it being the stuff that I do want to write about, but never will. Some people write for catharsis, and that’s great for them. Not for me.May 18, 2017 – 10:28 pmReplyCancel

    • Kristi Campbell - I know what you mean, Dana, and feel the same way watching your kids grow and thrive and travel and now the first year of college! Wow. We’ve been doing this for a long time I suppose… I sometimes write for catharsis but there are MANY subjects that will never find their way on these here interwebs pages!May 19, 2017 – 10:06 pmReplyCancel

  • Linda Atwell - One of the questions I am asked most is what exactly is Lindsey’s disability? I still don’t have an easy, quick answer, like: autism, Down syndrome, Aspergers. I generally have to go into a long explanation, i.e. short in her neurological system caused from an unidentified syndrome plus essential tremors. Wow! A mouthful, huh?

    But what does that mean, exactly? people ask.

    Although she was diagnosed as the “R” word and we know that word would not be used today, Lindsey would be called intellectually disabled or developmentally delayed.

    Yeah, but what does that mean? they say.

    So I try again and again. I don’t really know. May never know.

    I know that many of my sisters/mothers living in the special needs world do not want labels. I believe I’ve talked about this before, but I so wanted a label. I wanted one more than anything because I believed, with a label, teachers might better be able to teach her. Yet a label, I mean an easy label, never came to fruition for me. I hope it does for you. It sure seems like what they are doing for Tucker is working and I’m so thrilled for you.

    And as far as feeling like writing about something. I totally get that! Hugs to you.May 19, 2017 – 1:57 amReplyCancel

    • Kristi Campbell - I thought of you Linda, as I know you’ve struggled with what Lindsey’s disability is. It’d be too easy to say that Lindsey is Lindsey, that Tucker is Tucker… because exactly – what does that mean? What do they struggle with? With Tucker, it’s funny… somebody asked me the other day if we still thought it was autism, and a mom who knows Tucker pretty well basically said he’s “all better” (she didn’t use those words but I forget what she said). Her snippets into his life – I can see why she thinks so… but she also doesn’t see his struggle to brush his teeth, to understand that when somebody says that another kid has a nice shirt/is good at something, that it’s not about HIM, and how he struggles with so much in so many ways. But, he’s also a seven-year-old boy, with seven-year-old boy desires and interests… Anyway. Thank you and hugs right back!May 19, 2017 – 10:35 pmReplyCancel

  • JT Walters - Okayed peed myself over the calliope video. I hated that little shit too! “R” it released a lot of repressed angry I had towards that cartoon character. Now if someone could make s son outting Sponge Bob for the pirnographic.cartoon. I might some day be whole again.

    Kristin and “R”. It is just Tucker. No labels except; beautiful. adore able, perfect and really thoughtful. That is how I see him and growing quickly.

    Late so if missing please forgive. Awesome Tuckrr is all I see!May 19, 2017 – 4:28 amReplyCancel

    • Kristi Campbell - LOL to stupid Caillou!!! He is such a whiner! UGH I can’t stand him! No clue what you mean about outing Sponge Bob or some cartoon?? And I know. Tucker is just Tucker and so so awesome.May 19, 2017 – 10:40 pmReplyCancel

  • Lisa @TheGoldenSpoons - I feel like I have been watching Tucker grow up over these last few years of blogging and knowing you. I love stories about him and I kind of love that he was independent & confident enough to cut his hair (and that he wanted the man bun in the first place.). The older they get, the harder this blogging thing seems to be!May 19, 2017 – 8:07 pmReplyCancel

    • Kristi Campbell - I feel the same about your daughters, Lisa! I kind of love he cut his hair too… but the rest is SO long and now it’s this little sprout right at his crown. We’ll see what happens… and yeah, the older they get, it’s not really fair any longer, right?May 19, 2017 – 10:53 pmReplyCancel

  • JT Walters - Makes me miss my son that much more!

    Sponge Bob is British humor and very pornographic!!! Watch and learn grasshopper who had to tell me what erotica was! LOL😭😂😂😂😂😂😂May 19, 2017 – 11:06 pmReplyCancel

    • Kristi Campbell - Ok I’m obviously very naive because I’ve seen Sponge Bob and never got the pornographic part of it! Yikes! Also LOL.May 20, 2017 – 1:43 pmReplyCancel

  • Just J - While I think it’s definitely true that we all have places inside of us that we will never write about, even in journals hidden away for no one else to see, I am thankful that you have chosen to write about Tucker here and continue to share his story and yours with us, because not only do we learn from your experience, but we learn from the depth of your love what it means to be a mother, to encourage, to hope, and to believe. These are powerful lessons, and I admire your honesty so much!May 20, 2017 – 1:04 amReplyCancel

    • Kristi Campbell - Thank you so much Just J! I really appreciate you saying that — one of these days, I should probably go through the archives though and see whether there’s anything that might embarrass him when he gets older. I like being part of the community, and sharing, and helping moms who are newer on the path than I am with figuring out developmental delays, etc. but I also don’t want anything I write about to be something that would hurt his feelings, if that makes sense…May 20, 2017 – 1:45 pmReplyCancel

  • Allie G smith - I know what you mean (or think I do😭) when you say you want to write about, but don’t want to. Sorry about the haircut (I would have loved to had seen him with a man bun). I remember cutting my bangs to, it was awful. And shaving my unibrow😱. Hang in there momma xoxo.May 22, 2017 – 2:07 pmReplyCancel

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