My twins aged 7 both have ASD/PDA and significant behaviour issues. In my house I have to hide the knives and last year I sent our cat to live with my mum. The cat came back when my mum was hospitalised but she might have to go again soon as my son has recently throttled her again- when I screamed at him to stop he did it to me instead.
This is our experience of trying to get some help.
Paediatrician when aged 4 - this is for CAHMS due to the complex behaviour issues.
Finally see CAHMS after multiple rejections and a four year wait. They basically say they are autistic what do you expect. Discharge both children straight away without any proper assessment.
Safeguarding referral to social care - they say they are not ‘disabled enough’ and the safeguarding concerns aren’t serious enough. Offer to send some pictures of injuries sustained. They don’t want to see them. They say you need a family support worker (note, we had three family support workers years ago and all of them managed to make things worse and blame my parenting) - despite this I agree to speak to family support again to ‘tick a box’
Family support say this is way too complex we can’t help. Also you have lots of support already - the kids get Occupational Therapy and Speech and Language Therapy. They do, this is true - but neither of these services address behavioural issues or emotional regulation to the degree we need it. Oh well sorry we don’t know what else you can try. Write to your MP (already done that!).
Relayed the above to the Educational Psychologist who says I hope you can work productively with family support. Lol.
The EP does recommend some ELSA support at school. So far from what I can gather this is consisting of telling them to use kind hands and use their words, and going through the ‘ zones of regulation’ (they have done this more than once already).
Occupational Therapist - the kids really need some intense play or drama therapy - the behavioural issues and issues with emotions are blocking me from providing the OT services they need.
Request extra funding for play/drama therapy under their EHCPs- SEN panel reject this as they are
“unclear as to the evidence based rationale of the interventions suggested.”
There are numerous other examples of being let down / refused assessments or access to services.
No one wants to take responsibility or actually spend any money while the kids are young and the right intervention could make a difference - no, we’ll wait until they reach crisis point and then it will be too late anyway.
Over 6 weeks ago my MP wrote to minister for mental health, minister for children, ambassador for children’s health, chief executive of nhs trust, director of children’s services. Possibly a few others - no one has responded.
I’ve got numerous complaints and appeals in at the moment and when I have exhausted these processes I will be taking legal action.
It’s absolutely shameful. There are no services for these kids.