[Request] 1 , 2yo , Luke , South Carolina

[u/pokchop92]

Hi Santas! I'm requesting for my sweet 2 year old son, Luke. He's the strongest & most inspiring person I know & he makes me want to keep choosing to be better everyday.

Luke is a little musician. Music was his very first language; it was the only thing he'd respond to in the NICU to get him to eat. He was born almost a lb & a half & spent his first 105 days in the NICU on oxygen support & he got through so much. Now he's a perfect & mostly healthy little agent of chaos. He's autistic & mostly nonverbal (except for , "puppy , choo choo , ride , go , ball , & yellow" - he also knows how to quack & Moo & he yelled "HOHOHO" in Santa's face when he met him the other day) but he signs & gestures very efficiently. He also sings very well & loves mimicking sounds he finds interesting. He has perfect pitch.

He loves guitars & pianos. He has a collection of tiny guitars for each occasion (car, bed, outside, the one he can tune, the one with all the colors...) & he can figure out simple melodies on the piano by ear (twinkle twinkle, little lamb, Mario noises). I know that sounds crazy but other people have noticed too, unprompted! He's got a fantastic taste in music; mostly soul & R&B vibes. But he's also batty for Elmo & Mrs Rachel. So, he's flexible. He gets onto you if you talk over his songs!

He's been getting very into things that go. Cars, Trucks, bikes, tractors. He's taken a real liking to trains. They go, make fun noises, & have bass. It's so fun seeing him light up & make noises of the vehicles he sees!

He loves learning & figuring out new things. & he's so smart & silly & cheeky! He'll sign something in, I swear, a sarcastic way & then side eye you & cut you the half-grin. I can't even. Keeps me on my toes.

He's been through so much. Especially in the last few months. Like has been... very blustery. We were displaced by Hurricane Helene at the end of September. We were out of power for a few weeks & had to spend everything we had & could get on hotel & food. & we lost so much. FEMA is overloaded & doesn't seem to share my urgency for Christmas. Which I totally get. But it all makes my belly hurt. Add to that, he suddenly developed a severe allergy to one of his 3 safe foods (he has ARFID & a severe oral aversion from his extended time in the vent as a baby. He will only tolerate liquids or purees in his mouth or he'll throw up & stop eating) while we were at the hotel & now only trusts one. One thing he's willing to eat. Ever. I'm not sure how to convince him that it's OK now. But he's been such a trooper. He's not able to articulate some of his clearly more complex feelings, though. He's been signing "I'm sorry" before he asks to do anything. I guess I've apologized to him & had to say no a lot lately. That also makes my belly hurt. He doesn't understand, but he's such a good boy. I don't want him to think for a second that anything with the storm & losing his stuff or how sick his food made him, had anything to do with his behavior or doing something wrong. He's actually been so very amazingly good in spite of the upheaval. I wish I could give him a whole train of ducks & puppies playing guitars for how amazing he is.

I'm so sorry for how late this request is. It was very tough for me to make & I've been trying to write this out since last night. I'm not very good at this & I have so much to say about him & why he deserves so much more than I can give him this year. I know it's long. Thank you for reading & for helping make Christmas magical. Bless y'all!

https://www.amazon.com/hz/wishlist/ls/2F5Z4T94RRJLL?ref_=wl_share

https://imgur.com/a/OAEqzCG

[u/School_House_Rock]

A friend in mine son didn't speak until he was 3 and when he decided to, he was speaking in full sentences. He had the knowledge, he just chose not to talk (he is now 32, married 2 gorgeous kiddos) - they would dx him as selective mutism now, but in the early 90s it wasn't a thing

You might find some success in the Deaf community - it all depends on the group, some are very much sticklers that you have to be Deaf, while others are happy to have individuals who sign.

The subreddit is really great and may provide some ideas on how to help him convey emotions and other expressions - he already has a grasp of adding facial expressions to his signs (which is just adorable) to help express the nuance of the sign

Subreddit name is coming - have to check for official name....

r/deaf

[u/pokchop92 → u/School_House_Rock]

Yeah, I fully expect that of him tbh. It's what he did with walking. He showed us he could, but found crawling much more efficient for a very long time. Then, we went to a Halloween carnival & he hated the hay on his hands, but wanted to get to the other side to play, so what did he do? Stood on up & toddled on over like he'd been doing it his whole life.

Thanks for the suggestion, I'll go follow them now! In my experience, the deaf/HoH community have been super welcoming to our autistic community, & especially the kiddos! We actually got connected with a deaf kids group through the NICU, who have been super helpful with accommodating signs for his dexterity & development level.

It's actually really sweet to see some of his signs. He does everything palm facing himself, so he looks like he's waving to himself lol. Any sign over an open palm (like help, again, or stop) he'll instead do it vertically like clapping. So "help" is clapping with a thumbs up, & again is clapping with one closed fist. & he'll make up signs, like "uh-oh" is splayed fingers then "o" & he mouths so I know that's specifically what he's saying lol. & lately I think he's been pulling some sign-glish bc when you say his name, he'll do "L" but make the "K" sounds worth his mouth! It's so cool & crazy to see how smart he is to put that together!

Sign was actually really important to me, even before it was apparent that he'd be less (or slower) verbal. I'm also autistic & can't vocalize when I'm overstimulated, so I really wanted to make sure he had a few ways to express his needs. I feel like there's a lot of stigma with nonverbal children on the spectrum bc of miscommunication. Luke would probably be a lot more prone to meltdown from frustration if he didn't have tools like sign to ameliorate that overstimulation before it becomes full overwhelm. He doesn't always recieve info verbally if there are too many other things going on, but he can focus on a sign. So when I see he's getting ruffled, I can sign to "stop, breathe, make a smart choice" & he'll start finger counting (or sometimes even get caught on "breathe" bc he'll pretend to blow out his candles & get silly)

Sorry for the novel; I don't get to talk to adults often, & my baby is obviously my special interest so I could talk about him forever. Plus, I was also responding to your other comment about sign lol.

Here's more pictures. Bc I just have so many.

https://imgur.com/a/d2qwc78

[u/JMTC789 → u/pokchop92]

u/pokchop92, I also would be happy to have you contact me if you want to talk to another adult.  

Your posts reminded me of my own son's issues with delayed speech and ADHD.  As a 34yo paramedic, you'd never know he'd had any challenges, but those early years were sooo long.

I am awed by your crafting.  If creativity is in a gene, I think Luke inherited it from you 🤗 and I'd love to hear more of his escapades!

[u/pokchop92 → u/JMTC789]

Well shucks, thank you! That's so sweet!

Sorry for the late reply. Bubs has skipped his nap twice in a row with tummy troubles. I think his well visit had in fact made him unwell. Every single time!

I LOVE hearing these stories about these kids blowing proverbial raspberries at milestone charts & taking their time experiencing the world at their own pace!!! Thank you for sharing that, I know you're so proud of him! Paramedics have a special place in my heart. I've known quite a few (& needed several as well) & they're all wicked cool people who just want to help people. It's a fantastic job for ADHD folks! How long was it till he found his voice? Was he a big talker once he did, or was he a more quiet & thoughtful type? Did he always have an interest in medical sciences or was he a hobby hopper (like me lol)? Hope that's not too many questions...

This is one area that I'm actually weirdly suited for, & that my autism is a huge benefit (for once lol). I mean, it's exhausting (he never sits still. We went to a adhd kids event & every single mom commented on how busy he was lol) & sometimes very frustrating (like...his ONLY friggin safe food is $4+ per MEAL & not covered by WIC...so that can sometimes be a fun challenge lol) but let me tell you something. I feel this kid in my bones. I understand on a spiritual level exactly why he won't eat or talk. I can see what he's cogging like I'm reading a book. I can almost always find a workaround or way to communicate something to him. It's sometimes a bit silly, but... we're silly people so... lol. So I'm more thankful than anything. I'll rest eventually.

But yeah, long is a really good way to put it. But also impossibly short. I've always said that time's not real (as in I have 0 sense of it & it follows no real rules...) & I believe that so much harder these days lol.

Crafting is my stim & I would explode without my glue gun. Which is convenient, bc I've had to make toys & fix clothes as of late. But again, this is my yellow brick road of an alley! I recently made him a Tigger spring bouncing...yard thing? Idk what you'd call it. It's made from pallet boards, an old Trampoline spring, a recycled tricycle seat, an old Tigger stuffy that I waterproofed with Silicone caulk, & spite. It's like a spring-lever bouncer... thing? Am I making sense? (My meds are wearing off & I can't tell lol) I think (hope 🤞) he's gonna love it!

Sorry for the book again. Lol I didn't come with a "summarize" feature; my writing style is pretty textbook "stream of consciousness" with no other settings.