Undiagnosed DD14

[TightropeWalker]

Hi. I’m totally overwhelmed. DD14 has got to Y10 before all her difficulties have manifested. She was suffering anxiety in Y9 but we suspected there was more to this and asked her school senco to assess her - she ended up referring her for ASD assessment. Nothing happened and DD carried on at school, with some accommodations put in place for the anxiety. This year she’s into GCSEs and I feel we are now in crisis. We’ve struggled to get school to recognise her needs, we aren’t really sure of them ourselves. We had a SALT assessment done that showed a ‘spikey profile’ problems with inferencing but scoring really well in other areas. We’ve had a visual stress test that showed multiple problems and we are now awaiting the glasses to help. All these things we’ve actually got we’ve had to do privately. School has finally agreed to put her on an IEP but she broke down last night and said she just can’t do it anymore- she can’t go in. I don’t know what to do. Our lives have just been turned upside down and everything seems to be a fight. I don’t even know why I’m posting really. I’m a new poster just reaching out I guess.

Unfortunately you do have to push for support.

Have you spoken to the SENCO again? Follow up verbal conversations with emails so you have a paper trail.

In some areas you can self refer to NHS SALT and OT, if you can’t in your area you can ask the GP or school to. If CAMHS don’t carry out ASD assessments in your area it’s worth a referral there too. In some areas you can self refer.

If you feel it is needed you can apply for an EHCNA.

If DD can’t attend the LA must provide alternative education once it becomes clear DD will miss 15 days.

Thanks for replying. The paediatricians do the ASD assessments here and DD is through the pre-diagnosic pathway so is on their waiting lists. We self referred to CAMHS and have also used their crisis line twice - they say she is accepted for an appointment but I guess she’s on a waiting list there. We have applied for an EHCP partly because it seems to be the only way of getting an Educational Psychologist involved

Are the LA sticking to the timescales with the EHCP? Make sure you keep track.

If the LA agree to assess you can request SALT, OT, psychiatrist, clinical psychologist assessments as part of the EHCNA.

Appeal if the LA refuse to assess. The majority of appeals are upheld.

We’ve been getting advice from
SEND IASS so we’ll be keeping an eye on the 6 week timescale. I’m concerned about if she stops attending school in that timeframe too though. It’s like we are spinning plates

Be careful with SENDIASS. Some are good, but too many repeat the LA’s unlawful policies. IPSEA and SOSSEN are better.

If DD can’t attend that doesn’t change the EHCNA process.

Whatever you do, don’t deregister. Parents find it easier to get support when DC remain on a school roll, even if their DC can’t attend. Crudely you are someone’s problem. Whereas if you EHE the LA will say you are making suitable alternative arrangements thereby relieving the LA of their duties. It’s also easier for professionals to sweep DC’s needs under the carpet. If DD can’t attend the LA must provide alternative provision.

SENDIASS have been great so far but we’ll heed your warning. Its really difficult getting your head around all the mechanics around SEN provision, and at the same time getting to know your DC all over again now the masking is stopping, and somehow having to learn really quickly what her needs actually are. Its just so mentally and emotionally draining.

I would second all the excellent advice (as always) from @JustKeepBuilding . In the meantime, is your DD able to explain what she's finding so difficult about school now?
What's her academic profile? How many GCSEs is she taking? Do you feel she would benefit from extra support in lessons/moving to 'nurture groups'? Also, you will need to be working with the school now if you think she will benefit from extra time in exams.

Apologies if you've already done this but have you had a meeting with her HoY, Senco, form tutor?
Your DD may be able to have a 'time out' card if she's feeling overwhelmed in lessons. Is there a quiet place she can go during break/lunch times?

If your DD does get an EHCP, this can take her up to 25 so there is extra support there if she needs to re-sit her GCSEs (or is unable to sit them next year).

Sadly, yes, everything is a fight when you have a DC with additional needs. There is a crisis in funding and it is often the 'squeaky wheel that gets oiled first'. It also helps to know the law around support at school - Ipsea has some good information, if you've not seen it:

www.ipsea.org.uk/Pages/Category/get-support