Finally i have a date for meeting with EP.More hand holding please.

[flyingunderpants]

The meeting is friday morning,at school.
SENCO and DS's class teacher will be there too.
One problem is the EP that did the assessment has left.So it's a new EP at the meeting.Has far as i know she hasn't met DS.Not sure how i feel about that really.It's to talk about the assessment that the other EP did.
My heads gone blank.I need to write a list of questions.
I just know i'm going to cry.I feel so ill at the moment,my glands are swollen in my neck.I'm sure its stress.

It is a stressful business. If your head is blank maybe you could ask the teacher to

take the lead and identify the areas she thinks are of most concern.

This is one tactic I have adopted for those spinning head moments.

It will at least give you a chance to ease your way into the meeting.

handholding, mumsnet style

Thankyou lionheart

I'm going to list things here,and most likely add to them over the week.
If there are things that i add, that anybody think i shouldn't bring up please tell me.

Speech delay
Reading and writing (he's not really progressing,at the same level he was this time last year).
Difficulty in communicating.(not knowing what to do or say when playing,hard to explain).
Obsessions (used to be balls then cars now its lego.He doesn't play with anything else.Will only wear clothes with lego on.Brought him a badge now to put on if top has got picture on).
When its dark he has to turn every light on,in all the rooms he passes.
Doesn't like any change.
Forget where he needs to go next at school,or his way around school.Even though he's in year 2.
Noticed more and more that he doesn't make eye contact with most people.

Some of the above is on DS's assessment,but most isn't.
If i listen to MIL DS is just shy.I'm sure he isn't but its hard to explain.

He doesn't understand sarcasm.Even if you try and explain you didn't really mean something.
Can't ask him to do more then one thing at a time.He forgets or doesn't understand what you are asking him.

it sounds as though you are hoping for a diagnosis of aspergers/ somewhere on the spectrum.

tbh, the ep is ok to deal with school based learning, but these issues are much more widespread and would benefit from a proper developmental assessmenty. make an appointment with your gp and ask for a referral to a developmental paediatrician. the ep report may be some help with this, but the ep alone will not be able to diagnose.

this is much wider than school. do seek a referral to get some support.

some areas will refer to camhs as well as paed. dx for spectrum issues def not done by ep.

Thank you madwoman
I'm not sure what i want any more.
The EP recommend a referral to pead in the assessment.I'm waiting for an appointment.
But at the back of my mind,i keep thinking i'm reading more into things,then i should.
I just don't know what to think.

Do you have the ep report?
What tests did they do? Or was it just a crappy 'watch him in the classroom for a bit' assessment?

It wil be ok. They are taking you seriously, and once you are in the system with the paed things will start to happen. It's never fast, and they won't dx without an evidence base, so don't fret about blowing things out of proportion. Just share your concerns and ask lots of questions. It often works best at the beginning to bow to their wisdom and use lots of 'just want to do the best for x' type stuff.

School obviously see something too, so you can all work together to find out what...

And be kind to yourself. You know this week will be stressful, so don't push yourself. Hibernate if necessary, or keep busy if that works for you x

madwomanintheattic thank you.

I managed to get a copy of the EP report,after ringing and asking for it.
EP did watch DS in classroom but also did lots of different tests.But the EP that did the assessment, has now left so it will be a new one at the meeting.
It was the school that asked for EP assessment.So i know deep down its not just me being paranoid.

DS's teacher call me in at home time.To tell me DS had been really upset at school today.He couldn't remember his helpers name,who he as had for about 18mths.She said she has noticed he forget lots of things.Like where he is going.Which i had noticed myself,but he is now forgetting names.
She said she is looking forwards to the meeting friday,because she has afew things she wants to bring up.
I think i'm going to ask her tomorrow morning if i can see her before the meeting.

That sounds like a really good idea.

It isn't going to be easy, but you are moving in the right direction with school, which is really important to get better support in place.

Stay strong x

If you know which paed he has been referred to, you can call the paed's secretary and ask about waiting lists. Offer to take a cancellation appointment at short notice. Mention there are 'new' concerns, and school are trying to move forward but you need paed appointment to start ball rolling.

These things do speed up once you are in the system, but sometimes the waiting lists to get that far are endless. Crying on the phone is optional, but sometimes can't be helped. X

"But at the back of my mind,i keep thinking i'm reading more into things,then i should. I just don't know what to think."
Oh yes, been there! the only thing that gets rid of that is a dx! before that you will just drive yourself mad with that nagging doubt that is planted mainly by others saying things like "my DC does that", "oh yes, it's his age", "isn't that just a 6 year old boy" etc etc. well that was our case anyway. I now take a psychiatrist with 30 years experience word over all this crap anyday.
No matter what anyone tells you, you know your child. Stick with your instincts. In this case it would be nice to be wrong but if there is ASD on the horizon it is not fair to the DC not to address it otherwise it's exhausting for them. and eventually more and more difficult for everyone. Good luck xx

Thank you.It help to know that others know what i'm going thourgh and feeling.
I'll ring GP later and see if i can find out which pead DS's been referred to.At least that way i feel like i'm doing something while waiting for an appointment.
Oh i get lots of 'he's just being lazy because he's a boy' or 'he's just shy' ect ect.
I'm lucky that his teacher is pushing for extra help.I feel like we are on the same side.I'm seeing her tonight after school,to discuss what i would like to add to the report on friday.Hopefully she will tell me what she wants to add too.
Does anybody know if ASD runs in families?

It is believed that it can have a genetic component, yes, and certainly if you have family with asd then it is usually easier to get children into screening earlier (whether this is because you are used to system or recognise warning signs earlier is up for debate, but professionals are more likely to take concerns seriously)

madwomanintheattic - sadly strong family links to asd aren't always taken into account in every area . My son isn't the first local case I've come across where the pros have totally ignored it - am currently trying to help a friend whose eldest is diagnosed AS and it's obvious to all but the pct that her youngest is too.

Some forms of AS/HFA deffo run in familes - my anecdotal research is leading me increeasingly to think it's often linked with some kind of dietry/gut issue in these cases - but I'm having real trouble finding enough properly evidenced clinical trialed evidence to prove it iyswim. All the research in this area seems to be chronically underfunded, so flawed & uncordinated.

Hi flyingunderpants.

I just wanted to lend my support. The 18 mths leading up to DS's diagnosis were so stressful! I was emotionally exhausted, had various freak-outs and got ill from the stress - tonsilitis and then eventually glandular fever. It is really hard - a fraught, confusing, frustrating place to be - so just try to pace yourself, be kind to yourself and remember - you are not alone.

If I were you I would type up a one-page A4 list of the issues you believe your son has, with brief examples, hand it to the EP, SENCo etc and go through it systematically in the meeting making clear that this list is not exhaustive, but outlines the main issues you have identified so far. Obviously, you welcome their input etc etc.

So far you have the following, to which you can add a brief example for each point:

• Speech delay
• Cognitive problems, regression in learning
• Social communication issues, finding it hard to understand social rules and

cues.

• Obsessive behaviour
• Sensory issues
• Difficulty with change and transitions
• Poor memory
• Poor eye contact

There are some schools of thought that believe ASC may have genetic roots for some children. My DS has Asperger's. DS has two cousins with Asperger's Syndrome and one of my cousin's has a child who is profoundly autistic.

Good luck and give me a shout if you need any help. I have been there and have the t-shirt

That's depressing, boch.
Are yours on the GAPS diet? Have seen some v persuasive anecdotal stuff, but you are right about funding.

First of all i would like to say a big thank you to everyone that posted.
You all really helped me prepare for today. LovelyLovelyWine thank you for the list on your post,that really helped me.
The meeting went really well.The EP was lovely and listened to the teacher,Senco and myself.
To cut long story short,it has been decided that DS needs a statement.The EP feels that there is enough evidence,to get started straight away.
She is also going to get back to me ,about who else she decides to refer DS too.
There is also going to be another meeting before the end of the school year.
Finally we have took a step forwards.