Support for neurodivergent toddler

[Cat58]

Hi all, I’m new to Mumsnet. I’m nanny to two amazing grandchildren. My almost two and a half grandson is displaying very clear neurodivergent tendencies. We are paying privately for an assessment. My daughter is positive that he is autistic. He is her only child . He is loving, clever, speech delayed but saying more words each day and socially interacts pretty well with other children. He attends nursery twice a week with no issues. The issue is with his recent meltdowns and hurting himself usually over sensory issues such as his refusal to get dressed, the feel of certain clothes, not wanting his dirty nappy to be changed . My daughter is trying to do everything right and be calm and distract him but she’s at breaking point. Her partner cannot cope at all. Is there a telephone support line she can call to speak to another mum or parent who is going through the same thing? She has joined local online groups in her area in Worcestershire but she desperately needs some advice ? Thank you all.

Has DD looked at a referral to SALT?

Not all ICBs commission sensory OT, but if their area does, it is worth a referral. They might like to look at some of the ideas in this booklet. The Occuplaytional Therapists resources could be helpful too. It is primarily aimed at older DC, but the book the Out of Sync Child will help DD begin to understand some aspects of sensory integration differences.

Has DD spoken to the nursery? What support are they providing? Does DGS have an EHCP?

Has she spoken to the HV &/or GP?

It is worth contacting Home Start. They may be able to support DD.

Worcestershire parent carer forum runs some groups where DD can speak to other parents who have DC with additional needs.

Contact has an advice line and a listening service.

Hi Flawlessflipper, thank you so much for your informative reply. Yes my grandson had a referral to SALT - he had one appointment a couple of months ago. My daughter is using Makaton with him- I am too and it helps him but he can say quite a lot of words now. I will suggest that she check if her area offers OT but certainly the booklet you have mentioned is a good start. DD did try to get an EHCP and it was rejected. My grandson’s nursery is very supportive particularly as he has a very limited diet. I’m pretty sure OT was raised by DD to the GP but rejected but I will ask her what the reasons were. I will also advise her to contact Home Start and Worcestershire parent carer forums. Thank you again for taking the time to post.

Did DD appeal the EHCP refusal? Was it refusal to assess or refusal to issue?

For some reason the link to the booklet didn’t post in my pp, but it is here.

Hi again - I’m sure they said she could try again when he’s a bit older - I think they thought he was too young but I’ll check. Aah I did mean to
ask you about the book - thank you so much.

DGS isn’t too young for an EHCP. If DD didn’t appeal and still has the right of appeal, she should appeal to SENDIST. If she doesn’t have the right of appeal, she should request another EHCNA, then appeal if refused.

oh it’s not? Thank you- I will talk to DD tomorrow about this too. I appreciate you taking the time to help - thanks again .

LAs will say it is, but it isn’t. It is a good lesson in learning not to trust everything the LA say. LAs will tell you what they want you to know, their (often unlawful) version of the law, and will sometimes outright lie.

IPSEA and SOSSEN are charities who support parents with SEN matters. They both have lots of helpful information on their websites and they have advice lines. It is also worth reading the SENCOP.

That’s so interesting. As a family we are learning as we go along so it’s really helpful and enlightening to know these things. I have made a note of the charities and to read SENCOP. Thank you!