OK, DH finally agrees. GP appointment Monday.

[moosemama]

Not sure if you will remember me. I posted a couple of weeks back about feeling we needed to get ds1 assessed for ASD but DH was set against it at the time.

Well, its been a long hard trawl, but DH has finally listened to me and done some reading and then, out of the blue, came home and said he had booked an appointment with the paediatric specialist GP at our local surgery for first thing on Monday to discuss DS1.

We are hoping for referral to a paediatrician, but understand that some GPs are reluctant to do this.

I think the catalyst was parents' evening, when it became obvious that his teacher is aware of ds's difficulties and that not only is he struggling, his work is starting to slide and she has to sit next to him to get him to focus, yet still insisted (despite being asked directly twice) that he doesn't need any additional help at school! The transition to year 3 has been really hard for him and he isn't really coping, but the teacher insisted it was just emotional immaturity that she can handle, yet she is only a supply teacher who will probably leaving after Christmas.

Does anyone have any advice on what we should/shouldn't say to improve our chances?

I have prepared a short document listing the areas where ds's development has been 'different' from the norm since birth. It has been a really useful exercise actually, as it has helped both DH and I to realise the signs were there very early on, but with ds being our pfb we didn't know that what he was doing wasn't 'typical'. Eg, he never cried for a feed or nappy change - or anything really, was happy to sit on his own and for hours and wasn't really interested in playing with other people, but seened to be happier playing on his own, didn't babble (although did develop speech quite early) etc etc To be honest we just thought we had a really easy baby - mind you, he is more than making up for it now!

Anyway, I am really nervous about the appointment and desperately want to avoid wasting the opportunity to get our point across, so any advice would be really appreciated.

I think the document is a great idea. TBH, the GPs are usually, IME, not too bothered and refer on pretty easily (no skin off their nose).

Try and find out before you go who does the ASD assessment in your area. We were referred to a paediatrician first who then referred on to CAMHS because only CAMHS could diagnose ADHD (and they also diagnose autism, which came next).

It might be the CAMHS do all the diagnosing in your area, or it might be that paediatricians can. Try googling or looking on the local NHS place's website, or the CAMHS one if there is one. You want to make sure you are referred to the right person, if you see what I mean.

Good luck!

Thanks, I will definitely look that up. I have a friend whose girlfriend works for a neighbouring CAMHS so he might be able to find out for me.

moosemama

I would personally go for a referral to a developmental paediatrician rather than CAMHS but each area has different people making the diagnosis. Here in this part of Essex it is the dev paed. However, this can all take a long time. Certainly show this document to the paed; if you have any film of your son playing at home show them this as well.

I think the teacher is wrong here; it is clear that your DS needs more support at school. Also teachers are not usually given any real training at all in any forms of SEN so remain ignorant and come out with such crass comennts. I am not really unfortunately surprised that he is not coping all that well with Y3. Juniors is a tough old game and very different from Infants. This type of situation often arises when the child's additional educational needs are not being met.

Have heard all this "emotional immaturity" re other children; its a lot of bs. His needs at school are not being met and will continue to not be met unless you kick butt nicely but firmly!!!.

In your case I would now be writing to your LEA asking for your DS to be statutorily assessed with regards to obtaining a Statement of special needs for him. You do not need either a diagnosis or school's permission to do this. A Statement is also legally binding so the school will have to follow it to the letter.

With regards to school is your DS on their SEN register?. Have you met the SENCO at Junior School?. You need to meet with this person asap, it is likely that the SENCO is aware of your DS and his difficulties.

You are your child's best - and only - advocate.

www.ipsea.org.uk. Useful website on SEN with regards to additional educational needs.

Thanks Attila.

Looked it up last night and it seems that our CAMHS have a specialist one-stop team that are qualified to diagnose ASD. I think its most likely that the GP will want to refer to them, although in actual fact I also found out that we can self-refer. Personally I would have preferred a developmental paediatrician myself, even if it did take a bit longer.

I do know the SENCO at the school, as ds2 was put on the SEN register after he was seriously ill and hospitalised last year resulting in regression and loss of skills. Ironically, he is now ahead of a lot of the children in his class, they struggled to set him targets on his IEP that wouldn't exceed the abilities of other non-SEN children in the class, but refused to take him off the register - because the set-term isn't up! So now I have one ds on the SEN register that doesn't need to be there and one not on the register that does - its a total farce!

I would have thought that the SENCO is aware of ds1, but despite our having lots of conversations and meetings with her about ds2, she has never so much as mentioned his name. (Unusual surname and fairly small school, where everyone knows they are brothers, so no way she wouldn't realise we are his parents.)

Currently the only 'help' (for want of a better word) he gets is an pretty much permanent place in the SEAL group. He attended every session last year and made no progress, so you would think that might highlight the fact that he is not just emotionally immature, he honestly can't do it. Incidentially, we only knew he was in the group because he told us. I brought it up at parents' evening and the teacher said they choose which children attend each session/topic based on their individual needs and so far this year and last year ds has attended every session (along with the same 6 other children who have similar issues). I would question the helpfulness of sitting him in a room once a week with 6 other children that have social and communication problems as a way of teaching him better social and communication skills myself.

I do want to arrange a meeting with the SENCO to discuss his needs, and will look into assessment for statementing, but the area I live in is notoriously bad for turning people down, especially if the child is high functioning. I thought it might help to have some professional opinions, if not a diagnosis in my armoury before I go into battle - iyswim.

Thanks for the ipsea link, I have been on their website before, all very useful and informative stuff.

Unfortunately ds2 has been struck down with pneumonia again at exactly the same time of year as last year. Fortunately we caught it early and its not as severe as last time, but its all a bit stressful at home at the moment. Oh well, at least I'm not 8.5 months pregnant this time though!

To be honest I don't know how I'm going to find the energy to get through this week what with tomorrow's GP appointment re ds1, hospital appointments for myself and ds2 on Tuesday, emergency plumber on Wednesday (don't ask) and doctors appointment for dd on Friday. All on top of dd not sleeping as she has chosen now to try and cut 4 teeth! Aaargh!

Ignore me - rambling on as usual.

GP was amazing. Listened to everything we had to say. Was very sympathetic and agreed to refer to a particular Paediatrician that she knows of and advised us to go to the Head of the school and make sure that he gets ds the help he needs in class.

She did say that the Paed may want to refer him on, if he doesn't think he can help, but promised to stay on top of the referral herself.

Am so relieved. Feels like the start of a long road, but at the same time I'm happy that we have finally taken some positive action for ds1.

Thanks for your advice.