Advice needed please on referral appt with GP following on from my AIBU thread

[DowagersHump]

Ooh it feels like a bit of a big step posting in here but so many of you were so kind on this thread about DS's teacher telling me that she thinks he has possible SN at parents' evening that I've screwed my courage to the sticking place. :)

Moved on a bit since then and my main concern is to get some support for him before he starts junior school and/or get information to inform my choice of junior - he's currently in yr 1 so only has another year in his infant school and obviously I need to start doing applications/making decisions this time next year.

So I've made an appt with my GP on Friday. I'm going while DS is at school which I assume is the right thing to do - the GP won't assess him will he?

I'm pulling together a list of some of the things that I think may be a concern and explaining about the extra support he's getting at school.

So now for my questions:

Is that enough or will I need to fight for a referral? And who/what services am I asking for him to be referred to (assuming educational psychologist but have I got that wrong)? How long will it typically take to get a referral? Given my timeframe is fairly short, would I be better off to ring the LA educational psychologists direct and get a private appointment (which I can afford assuming it's going to be around a couple of hundred quid).

And the big question - if they do find 'something', what will happen next?

Thanks in advance if you can help me with any of these questions and virtually hold my hand before my appt!

[StarlightMcKenzie]

Look up the symptoms of ASD, Dyspraxia, ADHD and SPD and write down every one that seems to fit. Then next to each one write at least one, if not two real life examples. Copy this list and hand it to the GP whilst asking for a referral to a developmental paediatrician. It is much harder for them to ignore written evidence.

[EllenJaneisstillnotmyname]

The EP isn't a medical professional so can't DX anything medical, so you will be needing a referral to either a developmental paediatrician or possibly CAMHS in some areas which use clinical psychologists, I believe. There are two fronts to fight on, educational and medical. To get support at school it's the educational route you need, and getting a medical DX (or not!) can be a very long process, but it certainly helps to grease the educational wheel. Your school can ask for the EP to get involved. I can't remember the details of your DS's needs, are the school supportive?

If your DS is struggling at school there are 3 levels of support, school action, where the school support him alone, school action plus where an outside agency is involved, eg EP, SALT, OT etc, and finally a statement of SEN, where his needs and provision to meet them are assessed and documented in a legally binding statement. If he may be heading to a statement you can request Statutory Assessment yourself, directly to the LA. there are standard letters on IPSEA website for this, and it puts you in control (rather than the school) for making sure it's being done.

Gosh that was long!

[DowagersHump]

Brilliant idea Starlight, will do that.

EllenJane - thanks, that's really helpful. At the moment the school are dealing with it by the TA providing him extra support/1-2-1 during PE (I have downloaded the programme he is doing from the LA site - it's basically OT). At Easter, they plan to review his progress and then decide if they want to bring an OT in.

School are supportive (in the sense that they told me they thought he had a problem and have started putting things in place to help) but I am annoyed with his teacher who told me he has a problem with remembering what he's supposed to be doing when and yet doesn't give him much extra support (his water bottle goes into school on a Monday after the weekend and comes home again day after day because no one reminds him to take it out which is what happened in Reception; he forgets to change his reading book; he comes home wearing half a PE kit or odd shoes etc). So something that would make them acknowledge that he really does need extra support and isn't just being a dilly daydream or 'difficult' would be really helpful. (yeah, me and a couple of million other parents who are trying to get it for their kids I'm sure!)

One of the junior schools I'm considering has a system where children have a 'home room' and then the children move from classroom to classroom for their different lessons. I cannot see DS being able to cope with that - he'd probably just wander off.

[porridgelover]

Dowager, as you've mentioned sensory difficulties would a checkllist help you to show to the GP?

I agree with starlight that when you are going for a diagnosis, it helps to arrive with written support rather than trying to tell the story. A diary of what has happened; a list of examples, written concerns all go over well.

As for the problem with remembering; lots of children on the spectrum (which you mentioned on the other thread) have working memory difficulties. That means that they can cope fine with (perhaps) 2-step commands, but will fail at 3-step.
Visual schedules can help with this, although he's a bit young to read a list. But if teacher is willing, she can take 2 minutes to walk through it at the end of the day if you (show willing and) do it up for him.

Finally, if your DS is anything like mine, the possibility of moving from room to room for lessons would be too much for him and would exhaust him; leaving less available for actual learning.

[mariammma]

Make a simple laminated checklist, a visual schedule, and/or a template/jig for your ds to help him bring his belongings home. A bit like [http://themaryfrancesproject.blogspot.co.uk/2011/09/montessori-activities-and-placemat.html this] or this or something very plain.

The beautiful thing about this approach is that it looks as though you're giving the child a helping hand.. whereas actually you're subtly modifying the adult's attitude, focus and behaviour

[mariammma]

this oops

[DowagersHump]

The teacher did talk about laminated cards on a keychain to help him remember steps but I will do something similar for home - thanks, that's a good idea.

I'm not sure if he would be exhausted or just get distracted/lost when moving between classrooms in Yr 3 but I am fairly certain he wouldn't actually arrive in the classroom he was supposed to be in at least twice a day

Right - I've got SPD lists and dyspraxia lists which seem to cover most of the things he does/doesn't do. I will write down specific examples under each one :)

[Catsdontcare]

Ds was only 3 when we got referred but I think it helped that pre school had done a letter expressing their observations and concerns and I had a report from an independent salt when I went to see the gp. If your school are supportive and are the ones suggesting referral ask the teacher to write a brief letter supporting your request.

[DowagersHump]

They aren't supportive in me getting a referral now - they've said that they think it can wait until the summer term and we will review his progress then. I think that's too late because I will need to apply for junior school next November/December.

I will make another appointment with the inclusion leader if the GP won't refer him now. No one has ever expressed much concern before now although looking back, he was always particularly crap at sports day but I just thought that was because I am really crap at sports, rather than there being another cause

[Catsdontcare]

Realistically if you get referred now it could be the summer term before he gets fully assessed so I think they are wrong to tell you to wait. Mind you I'm not a fan of the wait and see approach!

[DowagersHump]

Well, that was semi-successful. Thank you so much for the tip re taking a list Starlight - was really helpful.

At first she said that she couldn't do anything without a referral letter from the school but I gave her the list (I basically used symptoms from a site about dyspraxia and another about SPD and wrote down all the things that he does/doesn't do linked to those symptoms). She read it through and said that she could see why I was concerned which made me feel that we were getting somewhere, then she asked me what I was most concerned about - his behaviour or his physical developmental delay.

I said a bit of both and then I told her about the fact that he tells me he's stupid and I'd be better off throwing him in the bin and then I started crying .

So she said that there was probably an integrated paediatric service she could refer him to as she didn't think he needed to see a psychiatrist nor a paediatrician. She is going to have a look and call me back later today to tell me what she's done. This is because, at my stupid privatised surgery, like all the other GPs there, she is a locum and this is her last day at the practice .

So we'll see what happens. If I don't hear from her, I'm going to go back to the Senco at school and ask them to write a letter on the basis that summer term will be too late for him to have been assessed before I need to start applying to junior schools.

This is the beginning of a long road I know but I feel I've taken the first few steps.

Thanks all for your help, it is very much appreciated.

[chocjunkie]

integrated paediatric service - wtf is that supposed to be?

i really think you need to push for an referral for a developmental paed.

can you get the school to write something down? Also, any chance to take your DP with you to the GP. I found it had much more of an impact when I took DH along? I would get something from the senco ASAP and make an appointment with another GP and not leave before you have received an referral tbh (that is what I did in the end - refused to leave without a referral).

[DowagersHump]

God knows but as a locum, it's not really surprising that she has no idea what the local services are.

She's left me a message telling me that she called the schools nursing service (which was her first idea - forgot to mention that). They told her that it wasn't their remit (funnily enough :o) and that she should refer him to community paediatric services which she has now done. Apparently he should be seen within 1-2 months. :)

[DowagersHump]

chocjunkie - am a single parent so not able to take a DP/DH along although I may take back up in future if I need it!

[alison222]

When you get an appointment from the paediatric services they will probably send you lots of questionaires to complete prior to the appointment - and hopefully to the school too, to get a picture of him before they see him and to give them an idea of what to focus on.
I hope it is not too long before the appointment comes through

[bjkmummy]

thats a very positive step - a referral to community paedatrics - they should hopefully get the ball rolling and get you started on the path. it is best to get it started asap rather than 'wait and see' my elder son was referred and his dx was very quick. my younger son was subject to the wiat and see approach and it took 5 years! if i knew now what i knew then i would have been mych more forceful but we got there in the end!

[DowagersHump]

Thanks alison - that's useful to know. I really feel like I'm plunging us both into the unknown here! I am the sort of person who needs to know - I had to know what gender he was when I was pregnant because I couldn't stand the idea that the people doing the scans knew stuff about him that I didn't

[WilsonFrickett]

Community peadiatrics sounds like a great place to start.

'Wait and see' is a phrase parents hear or have heard a lot. It is usually bolleaux and should be disregared. However, I do remember your thread and I think if at all possible you want to keep school onside so honestly I would tell them a white lie - you've heard it's a six month waiting list for referrals (which these days is probably optimistic) so you're keen to get the ball rolling now, etc etc.

[DowagersHump]

That's a really good point Wilson - I hadn't even thought about telling the school that I've been to see the GP but of course that's completely stupid of me!

I will make another appointment with the senco (she said that she thought we should meet again this month) and tell her what I've done. I do want to know for myself but if he had been at a primary school, rather than infant, I wouldn't have felt that there was such urgency.

As well as the two state schools, there is a small prep school locally which is affordable (it's very cheap for an independent!) and has no more than 15 children in a class. I guess we'll just have to see how things pan out. More than anything, I want him to enjoy school - because if you hate it in year one, you've got a bloody long time of being miserable :(

[WilsonFrickett]

Some posters have great experiences of private schooling for DS, others not. It all depends on the level of difficulty it will provide for them, unfortunately. It may be worth starting a separate thread on that specific topic to get views from others? I'm in Scotland and the education landscape is different.

RE the Senco meeting, yes I would tell them but as I said, present it as a fait accompli. It also shows them you are taking this seriously iyswim.

[WilsonFrickett]

^^ them being the schools, not the DCs. Where's my ?

[DowagersHump]

Here you go Wilson - a nice glass of Pays d'Oc for you.

Yes - I think it's probably down to how much he's going to be an issue for them and also will depend on their numbers - if they have plenty of prospective pupils, I'm sure they'd ditch him in favour of an NT one.

I will wait and see what the outcome of the referral is before I start seriously thinking about schools.

But yes, I will present it as a fait accompli to his infant school - I had a really good meeting with the senco and really liked her so I hope she can see that I've done it to give myself further reassurance rather than trying to undermine the school which I don't want to do. I think it's a good school which manages to balance the needs of a really diverse intake