Any help or advice please??

[Em8888]

Hi, I've been lurking around this site for a little while now and it is so nice to see what a great support you all are.

My ds is now 7 yo and I have always had a feeling that something wasn't quite right. It was when he started mainstream school that it became apparent how different he was to other kids his age. He is an august born so I just put it down to that. He has and always has been over anxious about any new situations, watches and plays the same games over and over again, seems to go into a daze when you talk to him, can't follow instructions well, found social situations quite challenging and throws tantrums whenever anything is changed in his routine.

However, in reception, his teacher told us that she was quite concerned about how little progress he was making and recommended we should make a referral for him. She even hinted at autism at this point, which I was quite shocked by at the time.

We referred him through gp to CDC and he was seen a year later by a paed and she concluded that he was just immature as he is just one of the youngest in his class.

He was then referred by the school to an ot as his writing wasn't progressing well at all and found it really hard and tiring, after 2 assessments, they confirmed he has hypermobility as he also has difficulty with his gross motor skills as well.

Then, we moved this year out of the area, into East Sussex. He is now at a much better school and are better at keeping us involved more so than his old school. He was moved from school action to school action plus at the end of summer term as they seemed to be more concerned about ds progress. This year, he now seems to be in the situation where he is very sensitive to classroom noise and loud noises at school, it had impacted so much he has asked to leave the classroom to work and eat lunch in the library - they have given him some light weight ear defenders to help him cope with this. I know he has never liked loud noise but it is now becoming an issue for him. He had a hearing test and detected no physical issues - apparently reacted in good time to them all. He has also been rereferred to a paed but as we are in another authority, we are having to wait another year for him to be seen, despite having been referred before - is this right?

We have also spoke to the ed psych with his deputy head who is an inclusion officer and raised all concerns that we all have with him and she said that it sounds like he shows some asd traits but needs to observe him which probably wouldn't happen til the new year!

So all in all, I am feeling a bit stuck, I don't know what to do next. I have accepted that DS is different to other kids his age but want to make sure he gets the right support at school and how can we deal with anxiety and issues appropriately as well. He is a very quiet and generally well behaved gorgeous boy, I want to do the best I can for him but feel like I'm stuck and do not know what to do next.

I have heard a lot about children being statemented and how it is hard to get, but I really don't know what it means - could anyone explain this to me please?

Sorry for the lonnnng post but I'd love any advise and tips on how you would go about it or have done previously.

Xxx

I would deffo echo what Polter says, spend this time to gather, gather gather evidence for the Paed assessment. Video and note anything that makes you think ??? what causes meltdowns/anxiety etc. sounds like his sensory needs are a big issue I would definitely prioritise these.

Set up a meeting ASAP with SENCO and Class Teacher to get the help documented/formalised in an IEP (Individual Education Plan). At School Action Plus school should be writing down targets for your ds and formalising the help he gets. It sounds as they are already willing to make accommodations for him which is good. What help do you think he needs? Social needs ought to be targeted in addition to academic. All this can be done while applying for a statement.

If Ed Psych is going in in Jan that should be really helpful to clarify his needs and give good ideas for supportive measures. Make sure you find out the date of the visit to ensure you are given the chance to discuss your ds needs with this Ed Psych. Don't let them just slip in and out again!!!

Stick around here for the many pearls of wisdom

Ah thank you lovelies for your responses.

Polter do you know what, such a simple idea keeping a diary and something I will do as it will come in so handy at the assessment - I seem to remember from the first assessment that there were a few things I didn't mention, but of course hindsight is a wonderful thing!

Funnily enough handywoman, ds has just had a total meltdown - his tooth was very wobbly, hanging on by a thread and was screaming the place down about it. He was so distressed about it, it was unbelievable, shouting at is to get away from him. It finally fell out when we were trying to tell him to wobble it and things calmed down. This is how he reacts to things when he can't cope with loud noise, differing situations and some social situations, it is so heartbreaking, especially as I want to know how to deal with his reactions in a good way.

Polter - I have thought about DLA but wasn't sure I could get it without a diagnosis. But when I think about how much time we have to pre empt everything and deal with his reactions, it might be worth it?

I will see if I can find out anything about the date of the Ed psych's observation as yes, I worry about them just doing it and not letting me know!

Thank you again xxx