Advice please - does my dd need a statement?

[frazzledbutcalm]

How do I know I'm not just wasting everyone's time? What happens if she's having a good day when they're assessing her? How do I know I'm not seeing/thinking more than is actually there?

Briefly, I have 4dc. Dd2 (child no.3) I think may be aspergers. I've thought it from age 3. We just about got through nursery, she wasn't happy until the day she left. Reception was an absolute nightmare. I try not to think of what we went through as it is really upsetting. I didn't go with my instincts and I will beat myself up forever about it. Anyway, she's now 9 and in year 5, and is learning to cope with school. Academically she's great. Emotionally, socially, she's not. She's just started to talk to teachers if she wants something, she's now learned not to cry during harvest festival/christmas assemblies etc. She has 1 best friend and I would say 5 others that she can talk to. She's come on leaps and bounds these past 2 years. She had severe anxiety issues that are now more manageable. I don't even know what else to write as there's just so much!

I saw a parent support partner at school who was fantastic. One of her sons is autistic so she understands. Over our few chats she said it sounded as though dd was on autistic spectrum. She then got her friend who works for CAMHS to (unofficially) chat to me who also said she was on the spectrum. They said they wouldn't do anything further as dd was now coping well at school and we are managing her behaviour at home.

I feel she might need the statement for the school move in 2 years time.. I'm not sure her new school will be as understanding if there's no official statement. Does a statement just mean school has to provide the extra level of care advised or is there more to it?

We have struggled with issues for years, sometimes struggled quite badly with her issues/behaviour. But now she's learning to cope I wonder if it's worth persuing or not?...

Any advice and help would be greatly appreciated.

Not so brief after all!

Hi frazzled and welcome to the board.

I think that you may have been advised badly TBH, a person from CAMHS shouldnt really be diagnosing your child, officially or unofficially unless they are a psychiatrist who has completed various assessments.

It does sound as if your Dd needs some extra support for the move to secondary and you can start the statementing process yourself. However If it was me I would be going to my GP and asking for a referral to a developmental paediatrician to find out exactly what the issue is.

FWIW and this is my opinion, if it has taken your Dd until yr5 to begin to learn to cope at school she could have a huge problem at secondary which is approaching very rapidly.

As I say this is only my opinion.

Pursue it for your DD, your gut instincts should never be ignored.

The GP should refer your DD to a developmental paed for further evaluation.

Does your DD kick off a lot at home after the school day?. I ask this as some children whose additional needs at school are not being met release all their frustrations of the school day at home.

IPSEA's website is good re statementing and I would suggest you apply for the statement yourself. www.ipsea.org.uk

What help does your dd actually get?

Why hasn't she already had a paediatric referral for developmental assessments if you have thought she was on the spectrum for 6 years?

She is unlikely to get a statement at 9 if you do not have professional evidence to support your request.

Ask your gp for a referral to whoever dx asd in your community (sometime camhs, sometimes paed). Get the assessments done. An informal 'dx' by a friend does not evidence of need make.

Do you have a file of her past ieps? Has she received social support in small group work at school in the past?

Yes, apply for a statement, but with no supporting evidence of need, they are unlikely to even assess, tbh.

What on earth was the parent support worker doing? Is she a counsellor?

What does the school senco say? Why did the parent support worker not suggest you discuss with the senco instead of her friend?

Start gathering your file of evidence, and getting her some support through the pct.

Get cracking with the diagnostic pathway. Girls and academically able kids seem to confuse the NHS, so you want to have the 18m of tail chasing wait-and-see etc all over and done with, well before year 7.

And as said above, an evidence trail proving the need for each and every bit of support is the key to decent support at school. Whether that's via school action, school action plus, a statement or whatever will be replacing them in two years time.

And dump the guilt, it's highly probable that if you'd kicked up before people would have ignored you anyway, or sent you on interminable parenting courses.

Guilt now is just getting in the way of the hard-headed, rhino-skin, tiger-mother attitude which you'll be needing shortly. try and alternating with and

Oh god, yeah. Guilt is misplaced, but largely inevitable as any sort of parent. Ds1 had obvious issues for years and wasn't dx until 10. No one was remotely interested until yr5, because he's bright.

But now is the time to get a shift on. No more informal chats. This stuff needs recording, and referrals made, and assessments carried out. The statement in itself is meaningless without the rest. And probably not possible without it.

I wished I'd posted sooner

THANK YOU ALL FOR YOUR ADVICE.

I went to the GP a couple of years ago. They wouldn't refer her as she interacted with family, therefore she must be fine

I asked at school and they said they can't refer her as she doesn't kick off at school. They advised me that GP won't refer as it then comes out of their budget

I've been back to GP recently and they've now said they'll refer her whenever I'm ready to start the ball rolling.

attila she kicks off big style after school ... some days worse than others. I can tell what kind of day she's had as soon as she comes out of the school door..

mad she now gets just small help, they tell her if any change is happening before it happens, explain it to her. Last year her class had to go the ict suite once a week and just sit anywhere and grab their whiteboard pen. Dd could not do this ... so they allocated her her own seat and pen. Which was great, until someone would sit in her seat, but she couldn't tell them to move. Just little things like that really. But only a very few staff are aware so it's not really ideal. Lunchtime staff are not aware so she's often just sitting alone if her best friend is not there.

I have no idea what SA or ieps are?? ..

The parent support worker is not a parent! Sorry if it sounded like that. She is a qualified counsellor who liaises with parents to get the best for their child. She fights school if she has to, fights government if she has to. She's there for the good of the child.

SENCO didn't do much tbh. But they say that because she doesn't kick off in school, they are limited as to what they can do.

I definitely have been too easily fobbed off. I NEED to be tougher and fight for dd. I find it hard to be forceful. I think I doubt myself as I've been told for years that I cause her problems and that she only acts up for me! (school tells me this)

When she started school she didn't eat for 2 whole weeks. She was slim anyway but I could count her ribs! She cried constantly. She would only wear a certain pair of socks, certain skirt etc. We had to walk the same way, never change route. The list is endless. Didn't speak to her teacher or other children. At all.

Up until a few months ago we couldn't even go shopping without MAJOR tantrums, tears and flinging arms. Now she will often tolerate a shop.

Everything has been informal so far, I think from your advice now is the time to step it up and make it formal.

Should I be keeping a list of everything we have struggled with over the years so they can build up a picture? Or will they just assess how she is now?

Oh, bless you. Get thee back to the helpful gp and request referrals to both developmental paediatrician and camhs. Ask who does asd assessment locally.

Read up on 'school action', 'school action plus', and 'individual education plans' (SMART targets). They don't have to be academic, can be social etc.

Try and document the ways that she is supported informally at the moment (the ict stuff etc)

You could also read up on stuff like sensory issues as well as aspergers etc.

Keep posting, and good luck x

I've just googled sa .... sexaholics anonymous ... i'm guessing this is not the sa i'm looking for

SA , school action, IEP, Individual Education Plan. Also google SEN COP, (SEN code of practice) I'll have a quick look to see if I can link a copy.

www.education.gov.uk/publications/eOrderingDownload/DfES%200581%20200MIG2228.pdf

Ahh, makes more sense

I'll take a look, thanks x

It says website is unavailable. I'll keep checking.

Weird, try this one and look for the downloads at the bottom.

www.education.gov.uk/publications/standard/publicationDetail/Page1/DfES%200581%202001

I've just tried link again, it worked! And so did the 2nd one. Much reading for me now
Thank you

It makes sense to get the ball rolling as soon as you can, as it can take months or over a year to get assessments done and things into place.

I wouldn't feel guilty either. In my case, we had a handful of assessments and was told that it was just development delay after each one. We stuck at it because as parents we knew it it was deeper than just delayed development.

My advice would be, don't feel guilty, keep on pushing and pestering for a diagnosis and don't take no for answer. An educational pyschologist should carry out assessments to decide what support should be given and then an appropriate statement of educational needs should be put in place.

Your child deserves the support that she needs and only you can get it for her. They make it as difficult and frustrating as possible, but don't give up.

Hell, we all feel guilty, don't we? There's always something you feel you could have done better. It's called being a parent. Not worth spending any energy on!

Re your question - they will want a full developmental picture, so anything you can recall, and also when each developmental milestone was met...

The school won't - they will just focus on the present, but a developmental paed or diagnosing authority will want a full history.

Ok. I'll start writing a list of all things I can remember being a problem for us. We saw an educational pyschologist at school 2 years ago who just said yes she has funny quirks but lots of us have funny quirks and can be shy...
All authority figures have always just put me off and made me think I'm making more out of this than there is...
The parent support partner and camhs friend said if I wanted to pursue it formally they would 'jump the queue' for me as they know so much already from me.
You get used to your dc behaviour and it's only when you see how 'normal' children react/go about things that it impacts how 'not normal' your dc react... i use normal and not normal very loosely as I don't like these terms, but ykwim x