How do you find the strength to keep fighting??

[lisad123wantsherquoteinDM]

I know I dont post here much, so sorry if its not the right place.

DD1 had an informal dx of ASD in June as a "formal dx would not be helpful at this time as everyone is managing ok"

In 5 months things have really gone down hill. DD1 is self harming, crying loads, panic is terrible and she says she is always feeling sad.
School really arent coping well this year and are struggling to keep her from panicing daily.

I called CDAC, they wont see us without a referal. GP wont refer us without seeing us again, and school nurse said she would get paprerwork in place. I have called school nurse 5 times and she has not returned my calls. SENCO isnt in most days and Im fast running out of steam.

How the hell do you do it? why do I have to fight so hard to get people to listen, I mean this is a 6 year old girl ffs!
Am I doing something wrong??

poor girl.

You need someone on your side. Does she have a paediatrician?

nope not a sauage, austic advisory wont touch her without a formal dx, cdc wont do a thing without a referal, SENCO is useless.

We have no help at all, and i dont know how we can move forward.

Sorry if this is a silly question, but why don't you see the GP? On the face of it, as somebody on the outside of your situation, that seems the obvious thing to do. Not that it will give you instant relief of course - you will still have to wait.

So sorry that you are all having to deal with this though. I can imagine it is really tough, feeling so isolated.

Also what does the teacher have to say about it all? Can't she get the SENCO to pull her weight? You'd have thought it was tough for her having to deal with your DD too, without the SENCO back up from her colleague.

I think you need to get the senco to call you to make an appointment with you, rather than relying on catching them when they are in. IME most sencos are fairly elusive unless you make set appointments.

It looks like you really have to see the GP for the referals and maybe ask to see a developmental paediatrician too.

well we thought it would be better to go via the school nurse, as she is more likely to have better insight and have an idea of what is happening, and I dont know if she has started the paperwork, if she has we dont need to see GP does that make sense?? If she called me I would know!

Teachers are struggling this year, there are 2 other children in her class with asd, and i think they are over worked and just dont know how to manage DD, as she isnt displaying disruptive behaviour, she can be quite hard to get control of but not in a hitting out way, as in mass panic and tears way. They also have 3 different teachers which DD struggles with, and they all work differently.

SENCO is goingt o call me when she is back this week, so will make an appointment to see her when she calls.

I would by-pass the school nurse at this stage. If she wants to add anything after the GP referral then that is great, she can do, but she isn't helping at the moment and you need to feel like you are doing something and there is light at the end of the tunnel wrt getting help.

Have you met the school nurse before? I wonder, if like ours, whether she has several schools to deal with and is too busy.

never met schoolnurse, will arrange to see GP tomorrow.

I would not expect the school nurse to have any more insight into this than a GP tbh. A GP will be able to refer you on to the appropriate specialists and people and I imagine the school nurse would suggest this anyway.

Oh poor girl ...poor you too
We also bypassed school nurse and went to gp. Gp basically said ' i have no idea what you are talking about...but you sound like you do...so am happy to refer' and referred to camhs
Go via gp

Is it mainstream school? Just wondered as we don't have school nurses at ours. If so they have an SEN budget and are expected to put in up to 20 hours per week 1:1 per child according to need. You do not need to have a diagnosis just have identified a need. There are lots of strategies they can put in eg visual timetables and if they have other ASD children they know about these and can use them without a diagnosis / outside advice. Do you think its school she is finding hard to cope with? If so could she go part time for a while?

Ring your parent partnership officer (look on your Local Council website under special needs) and see if they will go to meeting with SENCO with you. Take someone with you if you can to take notes.

If I were you I would write direct to whoever gave informal diagnosis and explain what has happened and that Autism Advisory service need to provide support asap as your child is self harming and things spiralling out of control. They will not want a letter like that on file without being seen to do something.

I have been to the GP today to discuss referral for ds1 to be assessed for possible ASD.

The GP was really good, listened to everything we had to say and is referring to a well respected paediatrician, but also suggested we make an urgent appointment with the Headmaster at ds's school to arrange educational support for him. I have spoken with the school this afternoon and they are going to set up a meeting with us, his teacher and the SENCO to discuss options.

It has taken us a really long time to pluck up the courage to take the first step, but we feel much better now that there seems to be some positive forward motion.

I agree with what some of the other posters have suggested. The GP would be a good point of contact, perhaps backed up by an appointment with the Headteacher at your dd's school.

I hope you manage to get some help really soon.

Hi Lisa,

Who gave the working DX and why exactly was no formal dx given at that time?. It sounds like a fudge on their part because they don't want to spend the extra cash.

You have an informal dx of ASD, that should be enough to go to the LEA and request your DD to be statutorily assessed (Statement). DO not let school do this, nesides which you write the SENCO is useless.

You can ask for your DD to be assessed - this is a positive thing you can do for her with regards to her schooling. Also you can appeal if the LEA say no, school has no such right.

Your DD is clearly not coping currently and this situation will not improve the higher up she goes through the school system unless you kick butt firmly with the authorities now. In less than two years from now she will be in Junior school which is yet another toughie for those children with ASD particularly if there is no real support in place.

You need to go to the GP and get that referral to CDAC with a view to obtaining a formal dx - school nurse won't be of much help here.

www.ipsea.org.uk

You need to understand her educational rights too. The above website is informative and has model letters on it that can be used.

I just wanted to let you know it does it get better. You have to keep going, you are your childs advocate. I know how difficult it is, to accept your child has difficulties and then have to fight all the way to ensure appropriate support - i cried lots. I think the most important first step is to get a formal diagnosis, then you have a "label" which you can work from, i dont like "labels", but with a label you can access provision. You need to keep focused, keep a file of all records and discussions. IPSEA and the Equality and Human Rights commission were both excellent. You also need to get a full copy of the SEN Code of Practice (i think england, wales and scotland have different codes)these are free. You need to know this document very very well. Write to the LEA and ask for a formal assessment for educational statementing - IPSEA have template letters on there web site. It took us a year to ensure that the statement was adequate to our child needs. Our child is now enjoying school and starting to make progress. All the pain was worth it. Good luck, keep focused.

If you really can't get a diagnosis - and they do sometimes push you off very hard - then can you do a private one?
I had a private diagnosis done for dd as the NHS were being very sloppy. The doctor was fabulous and wrote all the right things - including how many hours of support she needed etc so it helped us no end to get a statement.

And as everyone else has said - you DO NOT need to wait for school nurse to get her act together. Go directly to GP and cry on his/her shoulder. Ditto for anyone else you can think of. Paed, ed psych, someone at the LEA, whoever gave you the informal diagnosis ... etc. Send letters off and then ring them up. Don't be strong on the phone - let them see the worst. (But be pushy)

And hang in there. My fav saying - it's a marathon not a sprint... Take care of yourself as much as you can. (I know easier said than done, but make it a priority.)

I was in a similar situation to you, lots of problems and no help.

I took matters into my own hands and arranged an assessment at bibic, bibic is a national charity and they offer 2 day assessments, including screening for autism and it costs £50. Telephone number 01278 684060.

Ok, thanks so much for the support ladies, and yep we are in Herts!!

I had countless calls today, as I think they finally got the hint i wasnt going anywhere

SENCO has spoken to class teachers and we are meeting friday to discuss how to manage DD1 current behaviours in a way that is helpful.

School nurse called and she is sending school and me the questionaire we should have had before our first appointment with CDAC! and they will be discussing DD1 at refral meeting on Monday. We are being referred to my preffered peads mans, his a pain (worked with him myself during previous job) but he is the best and very though.

Myslef and the school have started a daily diary of DD1 to support DX.

And now feeling loads better, like im doing something for her other than crying on the phone as no one is helping.

Thanks again ladies x

oh dear, im wondering if your in my area too. I now know "informal dx" was a way of getting out of us being able to access services ect. Yes in June we were all fine, year 1 teacher was lovely but year 2 is very different, and lots of indepentant thinking which she cant handle. there has to a right answer and a wrong answer, think thats why she loves math

Why you taking them to tribunal??
If you dont want to say here my email is minx101 at hot mail dot com

We are east/north herts too

now thinking do i know u? LOL

Starlight, I am in herts too (lisa's sister) and it took me 3 years to get the LEA to agree to assess DD1 for a statement. She has 15 hours support atm, but she is due her secondary school transition assess in april and we are going to push for MLD school for her, the school and the advicory teacher both believe that MLD would be better for her, so we should be ok, yes?

sorry for hi-jack Lisa