Have name changed for this as easily identifiable but I'm absolutely banging my head against a brick wall.
DD is 5. Looks very likely to have ASD, also experienced trauma from birth to around 20 months so there's a question of developmental trauma. Has huge sensory processing problems, speech disorder, question marks on ADHD and has extremely high anxiety. She is very prone to violent outbursts.
At 3yr1m the developmental peadiatrics sad she met the criteria for ASD diagnosis but wanted to be sure sure before formalizing it. She started school September 2019 and was relatively fine to start then it hit the fan.
So the CDC are now wanting to formalised diagnosis but she is stuck in a huge wait to transition to school age services. Her anxiety is out of control, various consultants and professionals have written to express concern over how extreme they have seen her anxiety.
She is violent at school. She doesn't eat. She doesn't sleep. Her CDC team want her seen by CAMHS as they aren't prepared to do the final assessment they want to do until she has had support to reduce the anxiety. CAMHS won't see her because of the ASD and being under peads. No one will get us out of that argument.
She can't be seen by our sleep service or dietician without a diagnosis. (Even though she should have received one at 3 and they led me to believe there was no harm in waiting just in case).
Her school have hands down been incredible. They are so nurturing and caring towards her. They aren't excluding due to her meltdowns etc. She has 1 to 1 support. We have an EHCP in process which is stuck in an equally painful rut in the system and zero communication. It's very likely a letter they were due to send last week is going to cause a 10 week delay.
School can see how bloody difficult things are and kept her in throughout lockdown. They and I are all worried for 7 week summer holidays. She can't attend a holiday club without 1 to 1. There is very little running. There are no grojps i can take her to and she is 1 to 1 ratio when out which means we are trapped as she has a younger sibling.
So then there is social care. We are under early help to try and push the health system a bit more to get out of the rut as well as to help manage the anxiety and violence. Our early help worker has openly said several times DD needs specialist health input (that we can't get) and is beyond her level of skill and knowledge. She will be closing us soon.
School keep making referrals for a child in need assessment which is the higher level service to early help. Social care have assessed and said there are no safeguarding concerns so we don't qualify. They have said it is down to school and health. So we are too severe for the level 3 service but not severe enough for the level 4.
I'm.absolutely banging my head against a brick wall and it's a 5 year old child suffering for it.
I ended up posting similar to this in a local.parent carers group and realised horrifyingly fast this is the norm.
Aibu to think we can't allow this to remain reality?
AIBU?
To think no one understands how dire it is to access support for kids.
Realityofsen · 26/06/2020 18:52
It’s shit. My son has just received an autism diagnosis, although we knew for sure for well over a year beforehand. The waiting lists were so long. He still has issues with speech and language comprehension but SALT provision around here is so incredibly dire, he’s only been seen in clinic twice since he was two years old (he’s now five). Tried contacting a local private SALT and never got a response 🙃
I think it’s appalling that you can’t access sleep or dietician input without a diagnosis, even though they forced to into delaying the diagnosis! Surely the child’s obvious NEEDS are enough for a referral?
Honestly, it’s so shit 
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