Non medical care for special needs newborn

[Wombleofwimbledon1984]

Hello. I am expecting a baby with 22q deletion syndrome in early June. I’m confident that the medical side will be covered by the hospital but I know that the baby will be high risk for learning disabilities, low muscle tone, behavioural problems, mental health problems and speech delay.

I haven’t had any information around what services are available in any of these areas and I’d really like to do as much as I can now to prepare as I know often you need to fight like mad for them.

Does anyone have any advice as to how these things work? Do I go through my health visitors? Is there such a thing as a coordinator for all of this stuff?

Obviously giving birth whilst all this corona nonsense is going on means it’s not going to be anyone in the NHS’s priority but worth a try... Thanks everyone xx

honestly, it depends on the severity but I don't think there is much esp in the early months. maybe some physio later on for the low muscle tone but not much else for years.

my child has a chromosome disorder and autism, severe learning difficulties, and severe speech and language delays.

we have school support, had about 10 sessions of salt on the NHS over the years. she gets seen now at school once per term.... but that's it. we get no help with the behavioural issues as such.... whatever we get is through school but nothing for us as a family. there just isn't much out there.