Development delay?

[Icantthinkofastupidname]

Hello!

I'm just wondering if anyone has any insight on when 'doing things at their own pace' becomes a development delay, and who is the one to 'diagnose' this please? We are seeing our health visitor on Friday, so just trying to gather some advice/information before then.

For context, because it almost certainly is relevant, our son has Spina bifida, Hydrocephalus and Chiari II malformation. We see a physiotherapist every 4-6weeks, she doesn't seem overly concerned about his development yet. She is referring us to occupational therapy for help with seating. We are on the wait list for portage.

He is almost 9 month and he is not yet rolling, sitting or picking toys/items up. He will touch some things, if its close to him, but will not hold anything placed in his hand for more than a few seconds or voluntarily reach out for something. We are struggling with weaning too (in an ideal world we would have BLW, as we did with our daughter, but that's seemingly impossible at the moment). We have tried some spoon feeding of purees, and 9 times out of 10, he will gag and be sick or just post the food back out with his tongue. He gets monthly head circumference checks for his Hydrocephalus to ensure his VP shunt is performing correctly so they also weigh him, and over the past 2 month he has only put on 40g, so he has dropped a centile. They don't seem concerned about this tho.

Any words of wisdom gratefully received :)

Thank you!

Hi op. Didn't want to read and run. I don't know enough about you sons current conditions to offer much. However, my ds was officially labeled as having social communication delay at his 2 year health check and that's when he was put on waiting lists for things. I did raise speech delay at 17 months and he was seen but was put on a watch and wait due to his age. I hope this helps a little. I'm in the NW

As he has health problems they will be monitoring carefully. The delays to his physical ability is probably down to his health condition and they have put physio in place and made the referrals. They will not be alarmed at his progress or there of as it has a known cause.

I know it's hard but try not to worry about comparing to a typical child as he will be different in early development but they will progressively add in support as required.

As a positive story I have a 40 year old friend with spina bifida and hydracephealus who is married, 2 dc and a partner in a medium sized accounting firm, he does use a wheelchair day to day though he can drive, transfer himself about and needs no care help from his family or professionals. He's had surgeries but makes like of them to us so I can't tell you how difficult they were

SEN parenting is the Wild West
They're never concerned unless the issue is a threat to life essentially. If he doesn’t need to be in hospital then no one is concerned. That’s my experience.
My DS’s development from 2-4 was like watching a car crash happening in slow motion. But no one was ever concerned.

Now he’s almost 5 and granted they’ve given him an ASD diagnosis and he’s got into a fully specialist school…they’re still completely unconcerned. They don’t really care about improving, advancing or stretching kids they literally just ‘manage’ the situation to a base level and avoid any hospitalisation.