Would like some advice please about DS

[basgetti]

Hi I've not posted on this section before but lurked for a while and would appreciate some advice, input, anything really.

I'm currently 28 weeks into a severe HG pregnancy so feeling very fragile and unwell anyway, but just wanting to cry about DS at the moment.

He is 6 (Yr2), and had extensive speech and language issues resulting in therapy from 2 and a half which continued into school. He was discharged from SALT a year ago but has had ongoing problems and a new referral has just been made at my request. But I'm very concerned his issues go beyond just speech. He has major problems with socialisation, understanding and interpreting situations properly and just with his communication in general. Alot of his mannerisms and struggles seem to fit the descriptions of autism that I have read. But would this not have been picked up during all the time with the speech therapist?

I don't feel his needs are being met sufficiently at school and he ends up in tricky social situations that he can't navigate without support which doesn't seem to be forthcoming. He had an IEP for socialisation in reception but is at a different school now and they don't seem interested when I have tried to discuss this. He went to a party this week and it all ended in disaster, with children calling him names and running away, him lashing out in retaliation, I've actually kept him off school today because I just feel like I'm throwing him to the wolves and he doesn't have the language capacity to always be able to explain events or his 'side' of things properly.

What can I do? Should I ask for a meeting with the SENCO? I'm not even sure what I should be asking for but I know that things aren't right.

Thanks.

Hi basgetti welcome to the board.
How long do you think the SaLT referral will take? Could you phone his old SALT and explain your concerns, they might be able to refer your DS to the developmental paediatrician.

My DS (7) is very similar to yours. He had a referral to paed when he was 3.9, it didn't happen and I truly regret not chasing it up, I trusted his SALT and I thought if she didn't say anything about ASD it was because he didn't have it. His new SALT referred him two of years later after just a couple of appointments .He got his dx of ASD a few months later. I was shocked just because the first 2 SALTs never mentioned it.
When we first saw paed she said " why this child hasn't been seen before? it is obvious he has special needs!" .

My point is, if you truly believe there is something else going on besides his language difficulties, go and try to get a referral to developmental paediatrician through his SALT or GP.

Thanks for your reply. I'm not sure how long the new referral will take as the forms were only done this week, I will ask the teacher about the time frame on monday. I was shocked that they discharged him in the first place and took this as a positive that everything was fine, but unfortunately I feel that whilst his language has improved on a superficial level, the depth of his communication and social difficulties are becoming more apparent as he gets older.

We had exactly the same when DS was discharged at the beginning of Reception, I took it as a positive until the teacher and SENCO said "hang on a minute, he still needs plenty of intervention, don't let them fob you off".
He has just got his EHC plan this week and the SALT is still trying to discharge him!

Sorry you're going through this

Definitely do as tambaboy says. Keep a diary for a few weeks of behaviour, difficulties, all you have said aboev. Go to your GP, present the list and demand ask for a referral for a developmental assessment.

School is a separate issue. They may bury their heads in the sand to help get him assessed until or unless he starts causing problems for them (eg having real meltdowns in class). They also can't do anything to diagnose him. But they can and should be giving support, whether or not he has a diagnosis of anything, as social integration - or lack of - is as much of a problem at school as academic achievement, and they have a duty to support him here with or without a diagnosis. The fact he may have a language delay too should strengthen your case for support. The fact the SALT discharged him doesn't mean he doesn't need further help - it's just that the way the system usually works is that the NHS provide SALT for pre-schoolers, but once they start school, the funding and provision comes from school, so school have the duty to buy in the services.

But for assessment with a view to any diagnosis, you need a developmental paediatrician. This should also include SALT assessment alongside it.

Keep posting on the board - there is so much advice and support here to help with day-to-day stuff, as well as loads of information about how to get things happening with schools etc.

Thanks so much for the responses and the information. I really like the idea of a diary. There is so much that I just put down to DS being DS and we organise ourselves to accommodate it, but looking at it objectively it is becoming more of a problem in his social interactions outside of the home.

I am definitely going to speak to his teacher about putting some support in place to help his socialisation. He went from having an IEP and being allowed a safe space away from the playground in his last school, to being left to negotiate his way around break and lunchtimes without any support, just me being told a few times that he hit someone/was hit, or he comes out of school distressed about the latest situation he had that he can't explain properly. It's just heartbreaking.

In addition to the socialisation issues he is also very repetitive in his routines and in things he has to do. So if he likes a film he will want to watch that again another 20 times before he moves on. He will also have to watch a certain film or do a certain activity every time he visits relatives for example, as that is what he associates with their home. He also has 'set phrases' almost like a script he has to say each time a specific situation occurs. He didn't point or follow hand actions until he was well over 3, in addition to his speech difficulties which included not being able to make any consonant sounds until well over 3 too. He gets obsessed with things and they are all he wants to think about or do, and if something goes 'wrong' or not according to plan he gets very distressed and it escalates really quickly.

There are other issues too but these are the main things that are worrying me. I'm a bit ashamed to say I had little idea of ASD signs, and assumed because he is very affectionate, bright and engaged then it probably didn't apply to him. But doing a bit of reading around it strikes me that he seems to fit alot of the criteria. Hopefully the new speech therapy referral will help get the process going and he can get the support he needs.

Do you know when the new SALT will start? Because it may be a long wait, and even then, you have to hope that the SLT will agree with you that there's cause for further investigations. The SLT cannot diagnose, they'll have to refer again to developmental paed, so you'll then have to wait even longer for that referral to be made.

I would go straight to your gp and ask for referral, separately to any SLT that may happen. This is not just a S&L issue, IMO.

if you have concerns, you can go to the gp and ask for a referral yourself.

I would do a diary, as mentioned, first, to take with you. I would also google and read up on some behaviours... ds had obvious ASD behaviours(eg. deliberate, repetitive movements) then things that just seemed run of the mill stuff but were listed as traits when I googled.

I've started compiling a diary (and lists of concerns!) ready to take to the GP. Is it best that I go on my own so I can speak more freely, or do they need to see DS in order to do a referral?

I spoke to DS' teacher and she was very nice. She is new and is surprised that he was ever discharged from SALT. She is putting a new IEP in place for socialisation and has also put DS in a special intervention group for speech and language. I'm at the surgery tomorrow for MW so I will book an appointment for GP for next week whilst I'm there. Feeling a bit more positive about things today. Still being sick though!

Fantastic that the teacher is on board.
I wouldn't take ds to the appointment, that way you can talk more freely. Make sure you take notes, diary ext with you and insist on a referral to developmental paed.
good luck.

I've made an appt with the GP, I have to wait nearly 2 weeks but that was because of the specific doctor I wanted to see, who I think would be most helpful and the easiest to talk to.

Everyday at the moment there seems to be some incident or other in the playground, I'm finding it so stressful. My stomach is constantly in knots when he is at school and I only relax once I've picked him up and got him safely snuggled on the sofa. Is this normal? I'm so anxious I don't know how I'm going to cope with a new baby too. I'm already neglecting my health, could do with another hospital admission but putting it off as feel that I need to be the one getting him from school and making sure he is okay. I can't imagine another 10 years of feeling like this!