Hi OP. I wonder whereabouts in the workd/country you are.
I find your post relatable. My DS is 3 and has been waiting over a year to see our community paediatrician and speech and language therapy. We noticed when he was nearly 2 that he wasn't talking and it was quickly becoming obvious that he wasn't just merely a late bloomer. He baby babbled when his peers were beginning to string 2 and 3 word sentences together, whereas my boy had never even said "mama." Plus he was slow to reach developmental milestones and to this day has no comprehension or understanding of anything about himself or the world. For example, he's 3 and a half now and his peers can say "I am ...... and I am 3 years old," yet my DS cannot say anyof that or would even understand it. He doesn't know he's 3, he doesn't know his last name, he doesn't know what Christmas and birthdays are, he doesn't understand anything. It's incredibly difficult trying to get him to do or learn anything, for example, toilet and potty training. Again, all his peers are 3 and a half and independently toileting by now, yet we can't communicate with him in a way he'll understand to get him to do it. He doesn't understand his own body to know when he needs to go and to hop on the potty. He can't even say "potty!"
However, he's bright as a button at problem solving, puzzles, using cutlery, running, jumping, climbing, drinking from an open cup with no spills.
We are in Manchester, specifically Trafford and our first port of call was we forego the physicians/GPs and took him straight to our local walk in children's clinic.
From there, they sent a health visitor to our home to observe DS and referred him to something called Traffords Educational Development Services, who in turn were able to refer him to the paediatrician, speech and language and also occupational therapy. However all this has been put on ice during the pandemic and he hasn't been seen by anyone. Even before lockdown, the paediatrician cancelled his appointment 3 times due to her own unavailabity. One of those times we got to the office and she just hadn't shown up that day, no phone calls to any of her scheduled appointments or meetings from her team to let any of us know! Trafford NHS community services aren't the best, they're slammed and veeeeeeery slow.
DS has been accepted to his older bro's school now and is due to start in the nursery in 2 weeks time. The school applied for funding for him to have help in school because he's currently admitted to the services of something called SENAS (Special Educational Needs Advisory Service.) But I don't know what help that will be?! I'm in the dark because DS hasn't been seen by anyone and the school are asking questions I can't answer right now.
SENAS have suggested Autism to us but it doesn't feel like that's what it could be. He's cuddly and sweet and loves attention and cuddles, provided he's in the mood for it!
We've also had dyspraxia suggested to us, I wonder if you've had that mentioned to you?
My older DS was diagnosed with ADD two years ago (he manages it so well with no meds at all that aside from him struggling to focus and being easily distracted, you'd never know he had it!) and the health carers younger DS has seen so far have mulled over that being genetic and hereditary.
DS has been offered a face to face occupational therapy appointment in 2 weeks but I don't even know what that is for, he hasn't had a diagnosis of anything yet! We're going because it's at least a visit to someone, anyone! Has occupational therapy been offered to you?
I'm interested in your story OP, without wanting to pry. You mentioned DS was in neonatal paediatrics from birth?
xx