AIBU to take my daughter out of school before she sees paediatrician

[pelicantown]

My dd is 6 she has struggled every day of school since her first day at nursery. She has no friends, is always alone, cries everyday, bites her own arms with stress and is not potty trained in the night and has accidents a few times a week during the day.
We have been told that she needs assessing for autism. The school have sent off a questionnaire apparently we are waiting for someone to contact them back. We knew the waiting would be long but today I was speaking to another mum who is three years into assessments and still doesn't have a proper diagnosis of anything.

My daughter has tried to escape he school, she has locked herself in toilets , she has attacked her teachers and has to be forcibly carried in by 3 teachers which distressed her even more.

We home educate our older son (for different reasons) and also have 3 other school age children .

I just can't imagine 3 years of this. She cried for an hour last night just repeatedly saying my name. She doesn't communicate her feelings well although she has no learning difficulties when it comes to reading and writing.

I can't leave her like this for years, a new school would make no difference the school is great and they do what they can but i can't sit back and see my 6 year old biting herself until she has bruises and do nothing?

The reason I haven't taken her out is that people have advised me to wait until she has had a diagnosis of something to remove her as it is done through school but I can't wait forever for that can I?

Aibu to take her out before then and try to get help elsewhere ? Or am I making things worse?

[lesbsc101]

I am sorry that I can't help you but I hope someone in the area can.

[pelicantown]

Les- I am in Merseyside.

[lesbsc101]

Could you tell us what country you live in? Might be easier as people in that area might be able to give you more conclusive advice? My heart goes out to you- can't imagine how you must feel each day for your DC.

[JsOtherHalf]

@PuppetInParadize

DLA is still awarded to under 16's. The link I posted earlier details a very good guide to filling it in.

[beautifulgirls]

Pelican - it sounds like your DD needs more support than the school can provide. You should look into applying for an EHCP for her, that would be a legally binding document that advises what provision should be in place. Once assessed the local authority should then help you determine which school will best suit her and what support is needed there. You may for example find she is better at a mainstream school with a unit attached that has smaller numbers of pupils in any one area and that helps to reduce her stress.

All that sounds great, but be prepared to have to fight for the EHCP - local authorities often refuse to assess or then refuse to issue an EHCP after assessment claiming the school can already do everything. Please do come over to the SEN children board and post more there - lots of people who have been there. My DD has ASD and now attends an independent specialist school which is named on the EHCP she has - fo the local authority fund her place there. They couldn't offer her any other option that suited well although we did have to fight for her place and go to tribunal for it.

[PuppetInParadize]

things not tins

[PuppetInParadize]

I don't think you can make new applications for DLA now. It's being replaced by PIP. It is said that PIP is harder to get for ASD, but ds got it when he was assessed last year. However, you might find it easier with a dx. You need to really think of all the tins your DD needs that you don't do for her siblings of a similar age with no SNs. There are also ppl who can help you fill in the forms. I've always done ours myself though.

[Twinkladdictmum]

PLEASE apply for DLA. It is for her, and the additional costs she incurs (like weeing on stuff!) such as therapies and activities she cant otherwise access.

[Megatherium]

What does the school say about her? Is she making progress academically and in terms of her behaviour, anxiety, social skills etc? If not, she clearly meets the criteria for an EHC Plan and I would suggest that you go ahead to make a formal request for an EHC needs assessment. You don't need a diagnosis for this. There's information about how to do it on the IPSEA and SOS SEN websites.

[youarenotkiddingme]

You certainly should apply for dla. It's not about managing. Iys about the costs of having a child with these needs. And those costs are there all the time - which you use to cover with wages. You'd get carers allowance too. You could then afford to get DD therapies whilst you HE.

I would ask when the ep is coming in. The school clearly are trying if they've asked for an ep. It maybe the ep recommends a different type of school (specialist placement?) that does work for your DD. Then you have an informed choice on what's considered best and what you want to do.

But I certainly would never say you are BU to remove your DD if she isn't coping. My Ds didn't cope when he started sexondary last year (he has asd). He's in a different school now and is a different child.
But I was at the point of withdrawing to HE if that's what he needed.

[EveOnline2016]

I found without the diagnosis ds school didn't have the funding for him. When he was diagnosed then it was a domino effect as he went from 'behavioural problems' to ASD.

The school and me was able to to get a statement of SEN, the LA have written the statement and the school by law has to follow it.

[OneInEight]

YANBU. Took us 4 years to take this decision for ds2. Four years too long. We were told we had to stay in the system to get support. Sadly all that staying in the system meant was his mental health severely deteriorated.

[Squeakymoo]

I would ask the school who they referred her to and contact them directly to see how much longer the wait is likely to be, it may be the referral has got lost. I would keep pushing for an assessment or at least an idea of the timescale of how much longer your have to wait/ here you are on the waiting list.
I would also go to my GP and ask if there are guidelines/procedure for the GP to refer your child for assessment.
Keep pushing ad don't give up

[Librarybooksandacoconut]

OP I'm a senco but I've only got experience of one healthcare trust. Each healthcare trust is different, but in our area the GP can do a direct referral. However if the school have already referred then she should be already in the system and its a matter of just waiting for the appointment (again this is what happens in our area). Sometimes a diagnosis will be made at the first appointment, sometimes it requires input from the speech and language therapist (although I normally get our slt to assess first before I refer to the paediatrician so they have more information to work with). When diagnosis drags on, it's usually because there are complicating factors which means that it may be something other than asd going on.

[pelicantown]

No all - no my son had an iep for his dyslexia but dd does really well academically (assuming she will sit in a chair!) and so they haven't mentioned anything like this for her.

I'm not sure what the questionnaire the school did was called but they said they are waiting for the educational psychologist to come and observe her at school... so I'm not sure where that puts us in the process.

I would feel a bit guilty claiming dla - I had to give up work a year ago as we couldn't get anyone willing to look after her (she got asked to leave and after school club and family members can't cope with her!) but we do ok on dhs pay.
She has though caused thousands and thousands of pounds worth of damage during meltdowns and by weeing on everything!. I must be the only person I know who sniffs things before I get dressed, sit down or get into bed

[MTWTFSS]

You do not need a diagnosis for the school to put more help in place/apply for an EHCP/apply for DLA.

Depending on county, depends on diagnosis/waiting times. Some counties allow a paediatrician to diagnose, whereas others need the decision to go to panel.

For more advice:
www.ipsea.org.uk/

[JsOtherHalf]

The waiting list in this area for an autism assessment for a child is currently between 2 and 4 years.
Even with a diagnosis there can be little or no help offered afterwards.

[TheWitTank]

To add -my DS was diagnosed with Aspergers and it certainly didn't take 3 years. Less than 4 months from first discussion with GP to hospital assessments. NHS were amazing.

[Allthewaves]

Honestly a diagnosis may not get you any help with the school. Does she have an iep in place? Has she seen ed psych at the school.

You don't just have educational route. You can go to gp and request a referral.

I would be joining some asd groups and finding what works for your daughter. If it's been 3 years at school and you happy to home school then I would consider it. Though not sure how that places you if you r perhaps thinking a special scool in future

[Slimmingsnake]

I home educated my autistic son untill he was 8.. he was diagnosed age 4 through us going to the gp and being referred on...no school needed

[Twinkladdictmum]

It is Disability Living Allowance. It isnt means tested and is based on need not diagnosis. The form is horrid and you have to fill in each question as though she is having ger most awful day, but it is worth doing.

[JsOtherHalf]

w3.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

[TheWitTank]

Yes, I would take her out straight away. She sounds incredibly distressed and utterly miserable/scared.

[pelicantown]

Twinkle I am sorry I am not sure what DLA is ?

I have just phoned the gp and have a telephone appointment tomorrow (she said do that first so I don't have to list my Dds issues in front of dd).

If the gp is supportive and can refer separately from the school dd won't be going back.

It's kind of sad I do actually love the school although I have taken 2 of 5 children out! It's just that 2 of my children just don't seem to fit he mould

[allowlsthinkalot]

Take her out. I took my ds out pretty diagnosis. He was assessed and diagnosed whilst home ed.