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Urgent help needed-having massive difficulties with cahms

(12 Posts)
Greys33 Mon 21-Oct-13 05:30:20

Hi I really need some advice on what to do next. My son is only 5 but been having day and night wetting probs since started preschool two years ago. It started with a failure to potty train fully which had nursery forcing us to and led to problems with fears of toilet and would only use his own potty. we pulled out id the nursery and then at home I managed to get him to be dry most of the time and through the night mostly. My child started preschool doing ok with it but rapidly deteriorated whilst there. Leading up to this my child couldn't dress themselves despite my trying to show them, couldn't do buttons or figure out how to ride bike/ trike and still was unable to use a knife and fork, still opting for a spoon. At pre school my son struggled socially and found being moved from different classrooms hard. he wasnt shy or retrearing but more frenzied and over stimulated. school mentioned difficulties which we then arranged to see them however took two months to get in to see anyone. When we did they suggested a learning plan as they felt my child would struggle moving up to reception which we said was great. I then took my child to gp about wetting issue and was told to keep a diary and go back in three months, after about two months I got fed up to be honest so I raised my concerns with wetting with our health visitor instead who arranged a referral to paediatrics this was turned down and we were instead referred to Camhs. My child went through reception well as far as we're aware, he struggled to pick up phonics so I wrote into teacher for advice and worked hard on this he improved well. The p.e teacher on 3 occassiotions had a telling off at my partner in the playground about the fact our son couldn't dress himself. Which we ignored as felt completely unfair, but continued to work with son on this so as to help his confidence. Four weeks before summer my son reported a serious bullying incident which had us straight in at school where we were told oh yes we had meant to talk to you your child has not been doing very well at school. We were shocked and said can you clarify to which we were given very loose info but much the same as before we they discussed an iep for our son for next year which we again agreed to (both suggestions on action we followed up a couple of weeks later to be told that oh we are not doing that now) anyway, we arranged to meet new teacher senco and have a chat about our child. We were told that our son would get very stressed and have outbursts followed by lots if apologises afterwards. That our child struggled with sitting still and structured tasks and that they were defiant. Also told he is very affectionate and tries to cuddle other children and staff is too tactile. Right so we can't away feeling a bit lost. We were working with cahms already and had given permission for school to discuss our son with them. However our cahms sessions we felt at a loss with it seemed directionless and no real progress being made it seemed almost like they were waiting for something is the only way to describe these sessions. Over summer I worked really hard with son managing to get him to use no less than five or six public loos he had a lovely family hol where the family with us are specialist dyslexia assessor, and five teachers all suggested dyspraxia and ADHD needing looking at. I forgot to mention my son saw a speech and language therapist when 2 1/2 which they suggested he had unusual learning traits and may be on the autistic spectrum. Anyway, my son was anxious on his return to school this year he needed me on his first day to go to the loo with him, his class teaching assistant he said tells him off alot who was a little pushy about my going to the loos with him but I had to insist. Since back he's wetting himself terribly again he's had 4 serious incidents of aggression and ex spidering himself we found out from him he is seeing the learning mentor but no one told us and cahms have been very unhelpful it ended last week with him being excluded from school and school asking to have him statemented. We have agreed but pointed out that school having followed stamenting procedure so he probably won't get through now, they responded by putting him on an iep on Friday. I asked school to bring in an ed psych in too to access my son and the person at cahms told me off saying I was interfering in the process?! I made a complaint to pals and want to be given a new team now as I'm furious at how mis understood I am by them. They over summer told me not to see a gp again for a paediatrics referral again and now I feel I should not have listened to them. So I have arranged with doctor for a referral to the in continence expert just waiting for it to go through. Please I don't know what on earth is going in here but I feel we are being massively let down and mis understood. My son is suffering and its really got me feeling that I don't want to send him back to school.

Hi. You poor thing. You absolutely ARE being let down and taken on a merry ride.

(Sorry to be picky but could you use paragraphs or break up your text a bit. I may have a disability of my own that makes it incredibly difficult to read like that).

Firstly, as far back as you can remember with as many actual and approximate dates, you need to write a diary/log of all contact with agencies so far.

Next, you need to read up on dyspraxia, ADHD and ASD and find symptoms lists. You aren't trying to diagnose here but write down every symptom that appears to describe your ds followed by a real life example or two of that symptom. Take your list to a GP and Insist in is put on file and on a referal to a developmental paediatrician.

Next, send to the SENCO a chronology of events wrt the school, their promises, the incidents.

Don't whinge or complain, just keep it factual. I.e on x date, DP and I visited you at your request to discuss x. You told us a, b and c, and offered to write ds an IEP.

On x date, I asked if I coukd see the IEP. You told us you weren't doing that any more.

On x date, I insisted on accompanying ds to the toilet. The TA made it clear she wasn't happy and said x.

Say you are just puting your records in order and felt a copy woukd be useful to her.

If you can't remember the dates exactly it's fine to say 'around about Christmas time'.

Greys33 Mon 21-Oct-13 10:52:49

Hi apologises about the message. It was done in a hurry and I'm not the best at paragraphing and full stopping were I should.
Thanks for the suggestions just wondering what should I do about cahms?
In all of this we have put our complaint in about the way the therapist spoke to me but feel unsure about where to go from here?
Do/can we leave cahms now or should we be prepared to. Wait for a new team?

I would write to CAHMS and ask them to explain what outcomes they expect for your ds as a result of his attendance.

If they're as rubbish as you say they are (and I bet they are too) then the answer to this question will be enough for you to write back and say that you are suspending their intervention at this point as you have seen no benefit to your ds from attendance so far and have no reason to believe there will be any, and that you'll be back in touch should you change your mind or feel that your child has any mental health issues, which you currently do not believe he has.

PolterGoose Mon 21-Oct-13 13:52:58

Hi Greys flowers

I just want to support what Star says, read stuff, make notes, keep a diary and also video any behaviours that you think might be important for a paed to see.

It really does sound like he needs to see a developmental paed, not CAMHS. I found that the more I read and learned the more I was more able to use the right language, it's so easy to be fobbed off when professionals use jargon and assume you know nothing.

There are 2 main areas that you need to focus in tight now:

Medical assessments and diagnoses - really important to evidence his needs and work out what is going on, is a good stepping stone to support and can bring legal protections.

Support at school - what are school doing? Is he in a state school? Are you in England/Wales?

Greys33 Thu 31-Oct-13 14:15:32

Hi thank you, we live in England and at the moment my son goes to state school. The school excluded him for a day and then asked us in for a chat they said they wanted to apply for a statement for my son. We came away and didn't really understand it all so I did a little research into stamenting I found out that because school had not taken any previous action although we had had it suggested to us by them and been positive that we then faced a problem sen won't access until school can show they have taken every reasonable action to correct the issues the child is having. So I arranged a meeting with school this time I went to the head I asked all these questions and they insisted a statement was their only option so I explained about my research and since then they have put my son on an iep we have also contacted pals and requested a change the person we now see went in to observe my child in school and school sent home a form for us to sign giving the communication and autism team access to my child at school. Our problem here is no wordy has explained who they are what they do and why my daughter needs them yet. We have had no follow up appointment made with the lady at cahms and tried to call her to find out how her observation went but can't get through. And we called school they just said its because he is struggling with peer relationships. I also went to the gp and asked for a referral but they told me they would just refer us to cahms. I feel like I'm being mucked about at the moment.

ArthurPewty Fri 01-Nov-13 21:04:03

Message withdrawn at poster's request.

2boysnamedR Fri 01-Nov-13 21:21:23

Sounds different processes county to county as I can not be reffered to cahms. Just to add my thoughts to above -your son should be on school action then moved to school action plus if no progress - both need a IEP. Statement is the step above school action plus. Sounds like your school want to skip all steps and go straight to a statement. The school might be able to pull that off as it coming via them hence a bit more weight. I would write to the school. ' you said back in xxx you would do a IEP, to my knowledge this has not been done. Please can you confirm if it has? From my understanding I should be involved in the process and sign the IEP?'. 'Please can outline to me how you intend to help ds with behaviour, wetting, anger etc. while waiting for the statement process? How will you safe guard him and his peers?' . Please can we meet ( head) this week to discus these points' . We you meet then write to them to confirm everything they say. If they say 'we're doing all we can, we can't do anymore' that's all evidence for a statement but you can't beat on anything. Not the statement or any easy fix coming soon. Get the school to do something now. Ask what they have done with kids like ds in the past? He needs them to step up now, not just if / when a statement is issued.

ilikemysleep Sat 02-Nov-13 09:16:27

I would be requesting occupational therapy assessment in your shoes. This can often be done through gp or school nurse. Or for speed you can get a private OT assessment. We recently had one, ours was 250 for assessment plus report with recommendations.

Plus chasing up school etc. It does sound like lots of sensory seeking behaviours though, and OT are often more helpful than camhs in such cases. Have you seen the book 'the out of synch child?'.

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