DS (8) seems to be falling apart

[lamandler]

Hello, I posted a couple of weeks ago about DS who has been going through some assessments. We had a diagnosis (by DK) of atypical autism and possible ADD. I feel though like I can't even start to deal with that while self esteem is so low and his anxiety is so high!

It's all happening so fast, in Y2 last year (at mainstream primary) he was obviously bumping along under the radar, and even though I alerted school to some issues with sleep and mild anxiety, was always reassured that he was ok.

This year, all change - a new teacher, KS2 transition, and more self awareness/noticeable difference to peers means that he is a shadow of the happy little boy he was. Every day, he has tummy ache/feels sick, headaches, is telling stories of being teased, is being 'stupid'. I tell the Head, SENCO and teacher all of this.

We are in the process of having a range of assessments, so far OT and Ed Psych but they are unfinished, seeing CAMHS next week as a first referral point into the 'system'. Saw DK privately.

So bits and pieces seem to be happening at school to address some things, but he isn't accessing any help as he has disengaged almost entirely from school and learning.

I just don't know what to do - I can't deal with picking up a shell of a boy from school every day, teacher says "he was fine" when he OBVIOUSLY isn't. And I feel like I am going mad......

What can I do to help him? He is so withdrawn that he doesn't listen to me much these days so anything I say falls on deaf ears - is therapy of some sort potentially helpful? Would love to hear from anyone who has been in this situation about how they helped their DC get out of a hole - without us doing that for him he will never get the better of his other issues.

I can't stop crying, my own mental health taking a pummelling!

Hugs to the two of you! Can you be very clear with the school how he's feeling / has changed? E-mail it to them so it's in black and white.

If he's already going through assessments then they presumable are aware that he's struggling and they should be supporting him. Ask them how they are going to help raise his self esteem back up, and if counselling is available.

Let them know how he is when he comes home as it may be that he's bottling it all up from school and they're not seeing what you are.

DS1 (ADHD) had a real low in Yr1 but bounced back with his Yr2 teacher onwards. His dx helped but also she eased the pressure off him and let him get there in his own time while his self esteem came back up - it was what worked for him anyway.

Hope you get quick answers to his assessments, and is there someone who can support you through this? A regular coffee and a chat, plus the odd trip to the pub with other mum of kids with SENs is what got me through.

Thanks, I feel like I have been clear with the school, and the Head in particular. They have given him a time out card, and he will have mindfulness sessions and a Y6 buddy after half term. All feels like sticking plasters though IYKWIM? They are obviously waiting for feedback from the EdPsych before doing anything more drastic. I really do want them to ease off the pressure, but they seem to think he is refusing to cooperate in class at the minute through choice rather than because of anxiety - but surely they are interlinked!

I do know a couple of other mums at school who have children at various stages of the process, but I find I can barely talk at the minute without crying. I need to get a bit of mindfulness/resilience myself!

It's hard for the entire family getting a child assessed. I didn't realise at the time but at my last appeal my Ds was uber stressed ( he was so flappy he could have taken off) older boy also started to hate school. They picked up on all that from me. My next appeal is next week but because I'm chilled ( resigned) everyone is happy. Ds defiantly did feel some stress as well from assesment but do to the nature of appeals they all came at once.

One thing I realise more now is that we all matter as a family. Everyone deserves to be happy. However I don't feel like I do. I have to be in a mess to cope. I let my house turn into a tip and I find comfort in that weirdly.

Mindfulness sounds much healthier.

My ds was very similar going into y3. He disengaged with learning completely and would just sit in the corner or the back of the class on his own, he was bullied, developed migraines and stomach/digestive issues and became a shadow of his former self. I was just the same as you and was in tears a lot myself at the situation and how badly my ds was affected.

One day I picked him up and I just knew he'd had enough. I called the Educational Psychiatrists' Crisis Line and sobbed my heart out to them. They put his details on their next case meeting agenda and within a week he had an EP working with him 1:1 on emotional literacy, as well as involvement from the social/communication wing of our LA's outreach service. According to them, entry to Y3 is the most common age for things to break down for children that haven't had a diagnosis in the infants.

Not many areas have a similar EP Crisis Team, but essentially it was the work on recognising and understanding his feelings and being able to talk to someone about them that helped him. Also, as your instincts suggest, leaning off him at school, allowing him to take a break and read (his choice of de-stressing activity at the time) on occasion when it all got too much and giving him access to the library or to be in the class with the teacher at break-times if he wanted to, instead of having to go outside with everyone else.

We started the emotional literacy work before the EP got involved, by just getting him to point at emoticons that represented how he was feeling at the time. We'd do this before after school each day and eventually managed to get his teacher to do it after break and lunch and before he came home too. We then worked up to him giving us a word associated with how he was feeling and eventually a brief sentence, usually about what had precipitated that emotion. The EP then ran with it, taught him to scale his emotions 1-10 and incorporated that into what became his feelings diary. It was a slow and gradual process over the 4 years of juniors, but by y6 he was able to split even the sessions between breaks into separate feelings and why and was much more able to explain how he felt and why. In the meantime, the single most important thing was his weekly meeting with the Autism outreach teacher (he was diagnosed with ASD just before his 9th birthday). He used the session to download his worries about school, the teacher used his feelings diary to work out flash points and issues that needed working on and advised his teacher about strategies they could try that might help.

Ds is 13 now and even now, the 'mentor' role of having a trusted adult at school he can talk to about problems is the single most important piece of support he has. He still has a tendency to bottle things up, but having gone through all the emotional literacy stuff, you can draw him out if you ask the right questions.

Thank you all for your responses, sorry I disappeared, but couldn't remember my login!

Still no further on here, am currently reliant on school to assess/carry out interventions, and if I hear the word 'budgetary constraints' again I will flip.

One of the three targets on his much vaunted IEP is to learn his number bonds to 20, so there you go, that's the answer....

Meanwhile, he still feels sick every morning and I am not coping v well with this lack of control over such a huge part of his life

If the school is saying that they can't support your DS because of budgetary constraints, then effectively they are admitting that they can't meet his needs from the resources available to them which is the criterion for an EHC needs assessment. It also sounds like there's clear evidence that he isn't making adequate progress. So I suggest you go ahead with applying for the assessment - check the process on your council's Local Offer website.

This ^.

The school are admitting they can't meet your ds' needs without further funding and you have evidence that he is not making the progress he should be. Going ahead with a parental request for EHCP seems like a good way forward.

I came to that conclusion myself today and emailed the headteacher with exactly that. I listed the provisions professionals have (so far) said DS needs and asked outright "can the school provide these consistently in a planned programme" (or something to that effect!) as this is what we expect for him. If they cannot, we apply for EHCP, and I will start the process after a much needed half term break from it all.

It's the frankly awful SENCO who trots out the staff stretched, no resources line incessantly. She's really appalling and has upset so many parents that I know of with her incompetence and lack of tact. Awful. And it's the DC who suffer. No-one wants to rock the boat, they all have statements/EHCP so their children's needs are being met and funded and they actually have limited contact with the SENCO.

By the way, she has only ever said it verbally in a meeting, not on paper - does that still count? My email today was an attempt to get them to say via email that they can't - I suspect some resource will appear from somewhere to avoid the whole EHCP palaver.

What gruntled said.

Ask school if he's on the SEn register, how much money that provides them and for a breakdown of what they are spending it on to directly benefit your Ds - ask for SMARt targets.
They are unlikely to actually give the breakdown - although they will for EHCP but it'll make them sit up and realise you are aware that they do have funding for him so won't accept budget constraints as an excuse.

My LA gives a rough estimate that the funding is equivalent to 12.5 1:1 support a week.
Anything they are providing group wise does not count - they can only use an equal proportion of the funding for each child attending etc.

If you have verbal conversations email them to thank them for conversation on x date and time, a bullet point list of what was discussed, a bullet point list of their responses and a bullet point list of what they agreed. You can then put for example - we discussed DS need for x, you said school could not provide that due to funding, you didn't have any further suggestions of alternative provision you could provide.