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To think no one understands how dire it is to access support for kids.(11 Posts)
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?
If you are stuck between CAMHS and paeds and both blaming the other you could try asking your MP to bang their heads together (if you have a nice MP, or realistically a nice constituency worker in their office). That worked for me when my son's 'urgent' op took 6 months because either the hospital or the CCG lost the paperwork, both blamed the other and neither would talk to me. One call by the MP's office and the hospital caved immediately and offered me a choice of dates!
Otherwise, yes its shit. We are paying for a private assessment for my child as his school aren't very supportive and we don't want to wait years for a CAMHS referral. We are lucky we can afford to do that. It could work out very expensive if they then recommend more specialist assessment but going private seems to be the only way to get anyone to even give advice.
We went private for occupational therapy and social communication assessments. She is already under NHS salt for her speech disorder.
I wouldn't even know who she needs to see to be able to go private for the next bit
Would you be better getting this moved to the special needs board as there will be people there who can advise you on the next steps to take. It's good that the school is helpful and supportive. Is your GP any good.
I am so sorry.
My only advice is to join a parent support group so that you don't feel alone.
Find out who your local SEN advocacy service is so that you don't have to go into meetings alone and carry all the mental load of never ending meetings with very little outcomes.
Contact your local special school to see if they have any TA's who are looking for private work who can provide respite for you. They will need paying but they are the only people I know who will have the skills to be able to look after your daughter.
Basically, you need to find support for you, so that you don't burn out. As this is a long, rambling system. The absolute best case scenario for you would be a move to a special needs school.
Make sure the SENCO and staff keep applying for an EHCP to move her into a school that will have the interventions and mental health support that you sound like you need. Keep calling the SEN team at the council (as my experience is that the more annoying and prominent you are - the quicker you will get help).
Sorry I wrote that when there were no replies.
It is crazy. I have waited 53 weeks for an EHCP to come through, despite there being a 20 week legal limit. No ED psychs in the county to complete an assessment, no EHCP without one. Crazy!
Yes, it's hideous and shockingly negligent. Does your LA not have a disabled children's team? Ours does, but it often doesn't occur to the duty team to refer there, but if you phone directly sometimes that works? Have you got your MP on it? I'm so sorry you are going through this OP. Could you insist on a TAC before early help discharge you? Surely they should be referring up? Unmumsnetty hugs to you.
Thank you. Thought I might get roasted for asking too much.
CAMHS asked me if she has expressed suicidal thoughts but she hasn't got the blinking communication ability to do so. However, every single professional who has seen her in person has all expressed how severe her state of mind is.
Will be trying the MP route Monday, hadn't thought of that thank you.
On Monday if I actually manage to get hold of our EHCP caseworker I'm going to ask about if we were to fund the ed psych privately. She's well known to SALT who has had recent high levels of communication with school so they can write their report for it but ed psych will need school input ans we have 3 weeks before summer holidays. Deadlines have been relaxed but thebrough deadline for the report being done should be in 4 weeks. However the LA have stalled communicating the agreement to assess. Hopefully if the LA agree to use a private ed psych I fund it will prevent a huge delay to her starting year 1 without provision.
Our disabled children's team are very much physical disabilities or complex and seem to neglect neurodisabilities. Early help want to close before a TAC is possible to be held.
I might broach the subject of summer with her 1 to 1. Luckily her and her 1 to 1 have an amazing bond and she's already said before she would help in holidays but was bound by school. However that may be different now it's summer and DD is having a new one to one in September.
I'm so unbelievably tired by it all.
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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