I'm lost!

[Crinkleypeach]

Hi all
I am looking for some advice as I don't seem to really know what I am supposed to be doing.
I have a 5yr old son and his school sen teacher and I have had several meetings and discussions about his behaviour. He started off at school being quite noise sensitive which was news to me as I have a fairly busy and never to quiet household. He struggled with the noise of the dinner hall and the dancing they do in the mornings. Given time he has done a u turn and is now taking part in all of these activities. It feels like he just needs time to adjust to new situations which I feel we all do in one way or another.
He is very particular in that he likes routine and structure, they have 2 different teachers throughout the week and he found that confusing for the first couple of weeks. He didn't like being in class photos and now he is in all of them. His teacher has made a referral and I am now on a waiting list for him to be seen by a neuro development family hub person. I have no idea what this is and the sen teacher hasn't given me any information I don't even know what it is they think the problem is. I don't know if they think he may have autism or something else. I'm a novice at all of this.
He does struggle with his moods, he gets upset and then gets angry that he is upset and he seems to mix the two. I'm fully aware that he struggles with this kind of thing and I try to calm him down in the way that works but at times he gets so mad that he just shouts at me or throws things on the ground.
He remembers absolutely everything and is doing well in school with his reading and his writing he enjoys learning and he likes to have jobs to do so that he feels like he is being helpful and in his mind things are done right. Iv always liked routine. He stims with his fingers when he is thinking about something or working out what he is doing next with his trainset or truck garage toys, I have been into the school several times and questioned what they have put on the forms they keep filling out as they ticked boxes such as eye twitching and hand flapping which he does not do. I'm not one for hiding these things so if he was doing that I would be in full agreement but I'm not sure why they keep trying to fill out forms with things he isn't doing. I ask to see the forms regularly and I have copies as I am trying to work out what is going on. I'm sorry for such a long winded start but this is the first time iv found anywhere that I can say how I'm really feeling and hopefully get some advice back. If I have worded anything wrong or anyone finds anything offensive I truly didn't mean to be. What do I do next? Visit the gp?
I am so proud of him for the progress he is making and the growth in confidence he does need some extra support and I keep being told how difficult funding is to get and I appreciate the wait for things but I just don't know what I should be doing to help him with things like the moods etc.
Thanx in advance for any answers xx

If the school have made the necessary referrals you don’t need to see the GP unless you are concerned about something else. As well as a neurodevelopmental assessment you could look at separate SALT and OT assessments (they may be part of the multidisciplinary neurodevelopmental assessment anyway but separate referrals wouldn’t hurt), in some areas you can self refer but others the school or GP may be needed. Sensory OT isn’t provided everywhere but is worth a referral.

Are you sure DS doesn’t display the eye twitching etc. at school? It isn’t unusual for DC to display different behaviours in different settings.

If DS needs more support at school you can apply for an EHCNA yourself, IPSEA have a model letter you can use.

Thankyou for your response,
When I questioned why they had put eye twitching etc on the teacher wasn't really sure and took them off the forms. Iv been in and heard from them about different behaviours which as I said before was news to me as I hadn't witnessed any of it at home or out and about with him and I do understand school is a different environment and that things may well change when he is there but I don't seem to be getting any answers. I feel slightly pushed along in the process without really being told what they are thinking or what these signs are

This isn't very helpful, but we are in a very similar position, our son is also 5 and started school in September. We know our son has some behaviours which are perhaps a bit odd, but not to a point which we thought were particularly unusual and put a lot of it down to him having persistent glue ear for years. Now he's started school they have done a referral for ASD (I believe). A lot of the things they say he does at school, we don't really see, or didn't believe were big issues, but we are working with all parties as we are of the opinion that the teacher will have seen a lot more 5 year olds than we have and will have a better idea of what is typical and what is not and if they think our son's behaviour is not typical, then they probably know better than we do.

We were referred just before Christmas, and we have now seen CAMHS and Developmental Paediatrics and are now on the pathway. We have found that since starting this process it's made us recognise more behaviours which we hadn't even noticed which now seem unusual (like he chews holes in his clothes). I have no idea if I am supposed to be doing anything else! I am currently just dealing with any agencies and facilitating everything I can but I have no idea if I should be doing more. It's really tough!

I'm not sure that's helpful but you're not alone.

Its so good to hear from someone in the same position as me at this time, honestly thankyou so much for your response. I always knew there were some of his behaviours that were perhaps a little bit different but I didn't think there was to much to worry overly about. As you say the teacher has seen alot more of that age than I have also. I am going with it and taking everything on board and am waiting for appointments etc I know there is a long wait and I don't mind as he is happy in himself and in school and is making good progress. I think I'm going to have to speak to the sen teacher and find out what he is being referred for as I really don't know. I haven't been told to much about what they are thinking iv just been given some examples of behaviour.
I posted as I didn't really know who else to speak to at this point and I would just like to be in touch with others that are just starting out this process like we are.
May I ask what your referral appointments have been like so far?

Sorry for being so slow coming back to this, it’s been a bit of a busy week!

So with developmental paediatrics, they first sent a load of paperwork, questionnaires to fill in, the school were also asked to fill in the same thing (with slightly different wording). Then we were invited to a face to face appointment, about 3/4 months after we submitted that, where they asked almost the same questions as the questionnaire and also took our sons measurements. We then received another lot is paper work asking pretty much the same questions again. At the face to face appointment my DH was told that based on the information provided from us and the school, they would refer him for an autism assessment, but it would take up to 8 months for that to happen (so this should be early next year).

With CAMHS I think it’s been a bit unusual tbh. I spoke to the school SENCO and she said they had a therapist who was “looking for a 5 year old” to complete their training and she only had our son in that age bracket. The SENCO said in her opinion we should take the opportunity as referrals are taking about 18 months in our area at the moment. So within a few weeks, I had a meeting with a therapist where they wanted to know everything, mine and DH background, our relationship, my pregnancy, the birth and everything since and our concerns. In this first meeting I did say I wasn’t exactly sure why I was there and we didn’t think there was much unusual but the school had concerns. Despite this, they thought therapy would be good for our son. We then met his therapist (me, DH and son) and had a brief meeting with her and original therapist (who I believe is her mentor). They then offered us 3 initial play therapy sessions (son only). After this we had a meeting with them to discuss their findings and recommendations. Son has been offered intensive therapy which is 3 times week, 45 minute sessions and me and DH go to one parent session a week also. This is unusual though, apparently the NHS only offer 1 session a week usually, but this therapist is able to offer more as she hasn’t finished her training.

In addition to this my sons school have been giving him 3*10 minute lessons a week with an ELSA teacher to try and help him manage his emotions and I have been having monthly meetings with a continence specialist within the county school nursing team, as this is another area my son is struggling. She has just pushed the referral up the chain (not sure exactly who to) as we’ve been using her for about 6 months and he’s not totally clean/dry yet, though he’s made massive improvements. I self referred for that before son started school through the health visitor helpline that runs in our area, as I was worried about it.

I still have no idea if I should be doing more, I’ve looked at paediatric occupational therapists as I think this might help but not sure if it will or not and I’ve barely spoke to the school SENCO or ELSA teams in months, though I’m in regular contact with the class teacher. It’s so hard! And we’re already dealing with a lot of juggling facilitating all the therapy along side work and our other child, but also want to make sure we’re doing everything we can to help him.

Sorry! That’s a lot of text! But I hope it helps!

@ChocolateChipMuffin2016 one thing you should do is apply for an EHCNA if you haven’t already.

@LargeLegoHaul is this for an EHCP? I have been wondering about this as his last report from school basically said doing well/ok “with support” throughout and I wondered if it had been worded in that way deliberately. Tbh I should have asked his teacher! Is this something I can do without a diagnosis? And independently of the school? Or should I speak to them first? I’m feeling a bit clueless! Thank you, it’s so helpful to have advice!

Yes, it’s for an EHCP. A diagnosis isn’t needed as it is based on needs rather than diagnosis. You can apply yourself you don’t need the school to apply or agree, but it’s a good idea to tell them first as it is easier if the school are supportive.

IPSEA and SOSSEN have lots of helpful information as a starting point on their websites, including a model letter you can use to apply.