Sorry it's gonna be a long one, I'm at a loss as to what to do, I posted before in regards to my DS2 who is 5.
I've been fighting tooth and nail to get him seen by a paediatrician which still has yet to actually happen. I've had meetings with his previous teacher, school nurse, community nurse and SENCo team regarding concerns that something was wrong and the fact people were refusing to deal with it.
He is not your typical 5 year old, he is currently under speech and language and is delayed by about 2 years minimum, along side that is his understanding of things. (He initial went at 2 and was only 6-12 months behind however they refused to see him again due to being "short staffed") However, he is delayed in all aspects, he can't read, he can't write his name, he has only just learnt to count to 10 again after somehow forgetting (he previously could count to 10 at 2), he has no concept of numbers or letters, for example the letter 'L' isn't a L it's "my name" because his name has that letter in. He needs routine and stability and as such gets on really well with pictures outlining what he has to do/what is yet to be done in his day to day life, He really struggles with verbal instructions and will often lead to him getting confused/crying/whinging, even something simple as "go to the toilet" and despite living in the same house for 4 years and he knows where it is, he sometimes will do things like open the front door/go in the kitchen and just cry. Its like he's suddenly lost ability and understanding to do something he previously knew.
He seems to go through stages where he's doing really well, making great progress and then suddenly stops and can't do it anymore (as a baby he hit his milestones early, rolling, crawling, sitting, saying mama then come 7/8 months he stopped didn't walk to way past 1 and stopped saying words)
Everything came to a halt due to covid which I understood, however the school nursing team made contact and said they absolutely will not even entertain the idea of him being seen by a paediatrician until he went for a blood test to test for chromosome issues. I took him albeit felt it was a massive waste of time, nobody thinks thats where the issue lies, some came back so the community nurse agreed to see him, he's slightly anaemic which has nothing to do with the current issues we're facing and they're waiting on the genetics, however they've informed me they think they'll come back find and at that point they'll discharge him as it's not genetic etc and they he won't see a paediatrician and the school will have to figure out what's the issue as it's obviously educational.
Surely this can't be right? Everyone agrees that there is something wrong, he categorically isn't up to where a 5 year old should be, I mean his friend is count up to 50 and 3 months ago DS2 could barely get to 5. I'm at a loss as to what to do, nobody seems to want to get to the bottom of this apart from me. I've contacted the GP who saw him for 2 minutes and told me "not to worry, he's happy" which he is but that in the grand scheme of things isn't gonna cut it :(