Here some suggested organisations that offer expert advice on SN.
Possible SN?(14 Posts)
My DD is 12 and has been in and out of the system with various things: speech therapy, toilet training issues, sensory issues. She's had a couple of IEPs through being behind at school, too, but she always ends up being discharged. I spoke to Young Minds who reckoned that there was an issue but she's very borderline.
Finally, I got a referral recently to CAMHS, which she had had at 5 then was swiftly discharged. This was on the back of having some very bad thoughts that she might kill someone and having all these counting rituals and superstitions to stop herself. She also talks about her obsessions telling her to do stuff and not do stuff. I notice this increases and decreases with stress. She'd also stopped eating over the summer through a vomiting phobia but thankfully the not eating element of the fear has passed.
She has an awful temper where she smashes things, sometimes stuff that is expensive and we really care about and also her own stuff, which she is nonchalant about because it's hers.
Over Xmas, she'd had some proper meltdowns then settled into a routine and was relatively calm. She's back at school tomorrow, cried sick today but turned out to be fine. She was extremely difficult to get to bed, messing about, refusing to get changed, being disruptive, annoying her younger brother who was trying to sleep and, when she finally gets in the bathroom, she just stands there refusing to do anything at all. This can go on for over 30 mins. It's got to the point where I'm so distressed at how we are having to live now because, by and large, the difficult behaviour, after a very brief respite over Xmas, is practically on a daily basis and I must admit, I am not good at disguising my feelings now and keep lamenting the fact that my life is 100x more difficult than anyone else's and I'm having to follow her around like a 2 yr old. Tonight, even her tone of voice and facial expressions weren't the same - manic on both levels - and seemed to be getting a kick out of the performance.
She is on the waiting list for an assessment. I've been told over the phone that it may look like autism but it's hard to tell until they see her. I've also been told by a duty worker that the rituals sound like OCD, not schizophrenia, as I'd feared. She is perfectly normal at school and around friends though the mask is starting to slip around family. The autism doesn't quite fit for me as she is social, if very immature, both physically and mentally (she looks like a nine year old).
Her behaviour prior to secondary school was better. Not perfect and but manageable. We certainly did not have major problems every day. I try talking to her when calm and she agrees her behaviour is wrong but, in the heat of the moment, it doesn't compute. I am wondering more ADHD? She is starting to have issues with friends, which she didn't previously. From what I can see, they are ahead of her in maturity and find her a bit annoying, which, of course, is compounding things.
Anyone with similar experiences who can help or share?
Probably not much help but you've just described my DS, who is the same age, almost exactly. He has also been in and out of the system, was assessed for ASD when younger but told it didn't fit. Did end up dx with dyslexia & sensory issues and was ok-ish for a few years. However, he has got MUCH worse since starting high school - meltdowns, school refusal, ritualistic behaviour. Behaviour is perfect at school though and when others are around, it is us that gets the brunt! He has been referred for another ASD assessment but have been warned it may prove negative again as his interpersonal skills are too good apparently. However, there is definitely something wrong and He needs help.
So, huge sympathies. I will be watching this thread with interest.
I am not good at disguising my feelings now and keep lamenting the fact that my life is 100x more difficult than anyone else's
It isn't. I'm not going to get into just how ill informed that idea is but if you are thinking it and expressing it give yourself a large cup of tea and a gentle word.
That's the tough love bit of my post, but I do think it sounds tiring.
How can you make it easier for all of you?
I find no it helpful to address the individual things that are hard and then sort of inch our way back to ok.
So, breaking things when cross. What would you like her to do instead? Can you come up with a plan that allows her to express her rage/frustration/fury in a more ok way. (For example shouting/swearing/ripping paper/jumping)
Can you move teeth cleaning an hour earlier so you aren't all so tired and perhaps do something fun afterwards (e.g. Pjs and teeth then a game of cludo).
If puberty/hormonal swings are a thing, try to up liquids as it seems to damp down the mood swings.
Do more of things she likes/find s new hobby for her.
From talking to others who are surprised and shocked and say they don't have problems to the same degree, I do think I'm right in that things are harder for us than most. I don't and never had to the same extent (apart from 3/4), the same problems with ds. I think it's actually helpful if I accept and acknowledge that (without the emotion above) and then try to address it rather than brush it off as normal
When normal, we found try to come up with strategies for anger management but in the heat of the moment, it goes out of the window. That's the problem. Every day is different.
Motivation after is hit and miss. Eg if worked today in getting ready but might not tomorrow
I'm wondering if zzz means in relation to other people with children with SN?
I agree with you, most people I know with kids the same age do NOT have to take the same amount of crap I do and are shocked by some of the things DS says and does. I totally get what you mean with best laid plans going out of the window in the heat of the moment. We did manage to get DS to school relatively smoothly today but tomorrow is likely to be a disaster as he has games
Thanks worried. It's reassuring to hear I'm not the only one but I'm not glad you have the same problems. It's the simple everyday stuff she wont do that's wearing. I could cope with the run of the mill teen stuff
I'm sorry i meant in the context of her deficits not that all children need the kind of support you describe.
It is helpful to realise that you are working harder (as is she) than your peers with more able children, it isn't to think it is a hundred times more difficult than anyone elses.
In the context of autism/OCD/anxiety There will be many experienceing similar or worse challenges.
I think I would feel better if I know there was definitely an issue and had professional support and strategies up my sleeve that worked. The textbook stuff works for my son but not my daughter
The fact she has been under camhs and salt means there is an issue. Discharge just means they have nothing to offer at that time not "she is cured". The obsessions and rituals you describe are not behaviour nt children really have
It's frustrating because salt seemed to think her language was ok and it was in the expressive sense but she didn't know how to answer questions at 4 ish. She'd ignore and talk off topic a lot of the time. I could see it but they couldn't.
With camhs, she was discharged because her behaviour and issues surrounding that settled and the closing session amounted to 'there's nothing that would make me anxious. ' From occupational therapy, I just got a sheet with the explanation that her sensory issues would' right themselves '
I think ds has been discharged from salt at least 4 times (probably more like 6, but I'm soooo tired today it's a bit blurry). He has a severe language disorder,ASD, and attends a SS. Discharge means "we've done the bit we said or can't do more". We have also been discharged from OT, paediatrician, and EP .
Join the discussion
Please login first.