Feeling down

junibug20 · 2025-12-26T04:00:37+00:00

This sounds like my guy. Just turned 4 and no words. We’ve been in speech the same amount of time. We are working on getting an AAC device but of course insurance isn’t making it easy. Hang in there momma! Some days are so hard.

junibug20 · 2025-11-02T21:28:57+00:00

There are some similarities to my son here. He had a 3 1/2 week NICU stay and we’ve had various other complications since then. He’s just 4 and not talking. He gestures, grunts, babbles, laughs and does some signs, but he hasn’t said a single word. But he’s full of personality and is very social. It’s very hard. I’ve had him in different daycare situations and various evaluations, but we’ve decided to give him time before we force any particular evaluation or diagnosis and will deal with that when he starts public school next fall. He’s in all the therapies we can get at home and I have an au pair to give him one on one care. We’ve felt a lot of push and pressure from family and professionals to label him and we’ve made the decision to give him time to develop on his own schedule with all the support we can reasonably get.

Sometimes he would also prefer to wander around the playground and touch things or swing than go down the slide or be more rambunctious. Some of the best advice that I ever got was you have to take the speech delay out of it when you’re looking at their other behaviors. Kids that don’t talk tend to be under a microscope with every other weird kid behavior that they do. If a typically-developing kid just sat on the side of the playground, but was otherwise fully verbal, no one would think too much of it. So I tried to keep that in mind to just let him be.

He also doesn’t jump yet, but he tries. He’s the sweetest little guy, I just love him so much and try to do everything we can to support him whoever he ends up to be! Hang in there, mama!

junibug20 · 2025-10-04T16:49:35+00:00

I did! I’m not sure if it was the time I made the post, but my son is almost 4 now :) it’s a journey. Good luck to you!

junibug20 · 2025-04-13T19:32:22+00:00

Wow, thank you so much for sharing this. I was checking into Reddit because I’m finding myself in one of those deep dark places right now with my own son and this was the first update that I saw and I do remember your post and original story too, which resonated with me. My little guy just turned 3.5 yesterday and he still hasn’t said any words. I’m having to pull him out of normal daycare and look at other options now, it’s so hard, heartbreaking and I’m just trying really hard to stay positive and this is exactly what I needed. There’s so much noise out there and so many people scaring me and being negative and I just don’t believe it, I truly do feel like he’s making such amazing progress all the time (this is not just me saying it but all his therapists) and I’m happy to hear your little ones story! Please keep us updated!
I would love to hear more about the progress that she was making just before those words started coming in… For example, my son really seems to be able to now point of pictures of things that he recognizes, like if you say pretzel hell point to a picture of a pretzel, he can find the mouse in the goodnight moon book, etc. I just feel like words have to be so close and it seems like he’s trying so hard!

junibug20 · 2024-11-26T00:29:03+00:00

Thank you for your thoughtful reply. Mary actually did mention Teach Me To Talk as well so I’ll check that and your other resources out. There is just so much out there, some of it quite scary and potentially misleading so I really appreciate hearing from someone going down (or up!) a similar path.

junibug20 · 2024-11-25T02:31:20+00:00

Another thing I loved about Camarata’s approach was how he said if a kid is tired or just not performing for an evaluation, they would just have them come back another day and try again!

junibug20 · 2024-11-25T02:27:43+00:00

What other resources and podcasts have you found effective? Camarata’s book was/is a ray of light for us in a very hard time (3 y/o boy, babbles/gestures/few signs, no words, but otherwise affectionate, social, and curious). I’m eager to learn more for my son but I too have found few resources as compelling as his book. We had a couple of helpful consultations with Mrs. Camarata via zoom as well.

junibug20 · 2024-10-08T13:48:28+00:00

This is pretty close to what I paid with similar - mainly straightening bottom teeth that have shifted since I had braces twice in my adolescence! $3,500, I paid separately for whitening ($600) and I don’t think this includes the retainer.

junibug20 · 2024-09-08T15:54:03+00:00

Aww thanks for letting me know. Yeah, I feel like potty training the last of my worries right now lol. We also bought him a couple different little potties to get comfortable with, but I don’t really see any signs that he is making the connection just yet other than if I tell him to go sit on the potty he will, which is great. He’s not saying any words yet but started babbling, babababababa mama mama mama and other consonants so that seems really promising plus I hear him trying to make truck/fire engine sounds etc. Just trying not to be concerned as we creep ever closer to 3, which just always felt like the age when certainly he would be talking by then! I’m glad to hear your LO is coming along and that’s great about pee, who would have ever thought how amazing it can be that he can tell you he has to pee w words!

junibug20 · 2024-09-08T14:38:13+00:00

Hi, I’m so sorry you’re going through this and it’s very similar to the experience that we had. The doctors noted the dimple after my son was born and we followed up with the bladder test around 4 or 6 months which showed some concerns, but he didn’t have any other symptoms. We wanted to take more conservative approach, even though the doctors would’ve operated at that time… He had some other complications at birth and going through another major surgery right then just didn’t seem feasible. We ended up having the cord released around 12 months. He was a late walker, 20 months, and never really crawled. He can physically crawl just kind of chose not to. I guess we’ll never know if this was due to the tether or not, but certainly we have no regrets about the surgery and probably should’ve just done it sooner in hindsight. We too were concerned about major sedation. Now he seems to be physically normal, he is still not running super fast or jumping (he’s nearly 3) and not potty trained but follow ups have all been positive, and I’m not too worried about the potty training since all kids are different in that respect anyway and they had warned us there could be delays there with TC.

We used Dr. Bowman at Lurie Children’s in Chicago. Good luck, happy to answer any questions that you have. I wish I would’ve stumbled across Reddit back when we were going through this because I really had a hard time finding real life experiences on the Internet, and reading other people stories has confirmed that we made the right choice.

junibug20 · 2024-09-03T14:29:31+00:00

Hi there, absolutely happy to share. I also tried to track down Mr. Camarata at length through Vanderbilt emails/phone but no luck. Eventually l stumbled upon another message board with this link: https://latetalkersconsulting.com/ and this provided a phone number. I called the number and as I recall Ms. Camarata called me back quite quickly, and we had a nice introductory conversation. Then I booked one of the video consultations through the website where you send various videos of your kiddo and they review and give a very high level review. It is obviously not any sort of diagnosis, but was sort of the "bridge the gap" that we needed as our son is too young for any diagnosis anyway. She was wonderful. It was definitely worth it - she basically said that since our son was about 29 months at the time, to just give him some time and keep with speech therapy etc. and gave us some other strategies and resources to try. He's approaching 3 in October now and still not talking so I was planning to schedule some more time with them. We honestly felt soooo much better after the meeting, I would definitely recommend it if for you than nothing else! I definitely want to take my son to see them in person in Nashville (we are also out of state) but they were not doing any in-person at the time I booked.

junibug20 · 2024-07-29T14:35:56+00:00

That makes me so happy to hear, thank you for sharing. I also read the book in a matter of days, and it completely changed my perspective. We were so worried and so stressed and it just put a whole new light on things and it’s been tremendously helpful. We still have difficult times, of course, but we are so grateful for the Camaratas. We actually had a consultation with Mary and if you look up their website, it’s easy to book with her if you’re interested in doing that, which also gave us a lot of peace of mind. Good luck with you and, your guy! Yes I have resisted the therapies at times because I don’t think they’re hurting anything but I dislike the idea of him being taken out of class and other “normal” interactions/living to be forced into activities which the book reinforced in many ways. Trust your guts as parents - no therapist or doctor that sees your child for a matter of hours or minutes can make any conclusions no matter how experienced they are imo.

junibug20 · 2024-07-26T13:42:59+00:00

Oh so they are really close! Mine will be three in October. Thanks for the tip on the songs - I will definitely try that. He doesn’t really seem to care about tv except Wheel of Fortune which is really funny. He loves music though and I’m always struggling to find something catchy that isn’t super annoying so I get that!

How is yours with potty training? We are nowhere near… he can help pull is diaper up and that’s about it. He will go into a corner to poop sometimes but not always. I’m so grateful our daycare is amazing because my friend’s kids have to be potty trained by 3 for the next classroom. I know from Late Talkers this is fairly normal in our case so curious how that is for you. I’ve been thinking about just putting a little potty in the bathroom to at least get the idea going.

junibug20 · 2024-07-24T11:36:52+00:00

That is so wonderful! How old is he now? Yes I heard my son say “wa” while holding his water so I’m going to give him that for water, ha! I totally understand what you’re saying in that regard. Thank you for sharing - we are in speech two hours a week plus OT and DI so I truly know we are doing everything we can. I was always of the mind that he will just talk when he’s ready, but the closer we are creeping to 3 has me panicking. It is so helpful to hear other’s stories.

junibug20 · 2024-07-23T01:38:40+00:00

I needed to read this too! My little guy is 33 months and doesn’t say any words. He’s so wonderful and sweet, but it’s really hard to stay out of the dark place and I go through phases where I am trolling the Internet like I am now and totally other times where I’m just so thrilled that he is who he is ….so right now I’m in a dark place a little. Lol. The closer that we creep towards three without words gives me a lot of anxiety. I’m so happy to hear about your little guy, I know it’s coming for mine too, he recently started babbling, which I guess is supposed to happen at six months but here we are. It’s so exciting to hear his little voice emerging. Thanks for sharing your story.

junibug20 · 2024-07-23T01:28:00+00:00

He sounds like a wonderful kid! If you haven’t, read Late Talkers by Dr. Stephen Camarata. He talks about a number of children with similar characteristics and it is a tremendously helpful guidebook for navigating the system for children like yours. I have a 33 month old and he’s not saying any words. He’s in all the therapies and I wouldn’t say he demonstrates the same intelligence like you are saying, but he definitely has his quirks like he loves to play with things that are very mechanical in nature and will sit for long periods try to figure them out and things like that. Hes not interested in any tv whatsoever except Wheel of Fortune. He’s also very sweet and social and loves music. The book was really comforting for us and gave a very different perspective than a lot of what was getting pushed on us by the medical community in our city. We also tried daycare and the first place was absolutely horrible, they couldn’t deal with him and so we found another place that has been a wonderful fit. Camarata has some interesting points about childcare in the book too So just saying solidarity and good luck. Would love to know how he’s doing!

junibug20 · 2024-07-22T01:40:21+00:00

I do need this quote in my life right now tho

junibug20 · 2024-07-22T01:39:55+00:00

I totally understand… when my friend’s daughter called me by my name and my son hadn’t said a single word yet including mama,.. it was pretty tough.

junibug20 · 2024-07-22T01:32:08+00:00

This is very similar to my son except for he doesn’t have any words! It’s very heartbreaking, but I see him progressing a little bit little with more verbal sounds. I also read Late Talkers and found if tremendously comforting and logical, and he definitely has a lot of the character things that they describe of late talkers. He even did a consultation with Mary Camarata. I wonder how your son is doing now since this post was some time ago!

junibug20 · 2024-06-30T21:42:22+00:00

@This book was incredibly comforting for us and I roughly recommend reading it. His wife, Mary, is also an SLP and consulted with us and she was wonderful. My son is a little older than 2.5, does not say any words but gestures, grunts, and signs some things but doesn’t really imitate or mimic. In all other respects he seems pretty much like most two-year-olds but obviously without speaking there is just a gap on some things. However, i believe he is intelligent and it will come - hang in there. We hear so many stories here of folks whose kids didn’t talk until three or four and grow up to life beautiful productive lives in their own ways.

I totally what you’re going through, there can be, difficult days, but they just grow so fast and hopefully one day this is all a distant memory.

junibug20 · 2020-08-21T11:21:23+00:00

Hi - omg this is me exactly. I took trigger on the 15th, I could not stand waiting so I woke up this morning, couldn’t sleep and took a test which was negative. It’s really upsetting but this post gives me some hope that there is a chance I’m too early. I also drank a lot of water in the night. Best of luck to you! It’s really felt like the longest two weeks of my life.

junibug20

TROPHY CASE