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6 yr old strangling himself(15 Posts)
My 6yr old DS is in Y1. He was very unhappy in the first term at his private & very academic school, at first we put it down to the change (he was at a Montessori nursery), but at the beginning of the next term they told us that he is emotional & behavioural needs were beyond their level of expertise & recommended we see a paediatrician/educational psychologist. Around the same time, about year ago, he drank some Calpol. We rushed him to hospital, fortunately it wasn't enough to cause any damage. A week later he tied his dressing gown cord around his neck & came to show me. His face & whites of his eyes were pink & around his eyes it was purple. He saw an ed psych who said he had some Aspergers & Dyslexia traits, but that he was too young for her to confirm a diagnosis. He also saw a paed psychiatrist, but we didn't feel he was the right person for our son, for various reasons. DS started at a school specialising in dyslexia on his 3rd term in Reception (a year ago). He became much happier & we hoped that his 'issues' were in the past.
2 weeks ago he tied his dressing gown cord round his neck again, I didn't immediately realise what he was doing, until he came to show me, so he had been doing it on his own for at least a few mins. School called an emergency meeting with the SENCO & said we need to get urgent help. They also said that they feel he has Aspergers. They would like for us to get him screened, but we would rather wait until some physiological health issues (he has lots of stomach ulcers, rectal prolapse, rectal bleeding, small vomits & I think he still has reflux) have been properly addressed, to begin with by diet, as I feel there's a correlation between his gut & mental health. Both they & the GP said we shouldn't ever leave him on his own, & school suggested checking the house of anything he might harm himself with (that he could progress onto other things). He's been referred to CAMHs - the GP said it would be better to follow the CAMHs route before doing anything privately as he's not covered by medical insurance & it's likely to cost a lot of money. Last week he put his hands around his throat, again showing me, & at school tied his jumper around his neck. Our GP is pushing for a CAMHs appt. I'm waiting for the school's counsellor to give us an appt.
Does anyone have any experience of this kind of thing? Can anyone offer any advice please? I feel like I'm running on adrenalin, that this is a nightmare, I need to focus so I can care for my son in the very best way, but my panic is getting in the way. Is there anything I should look into?
Thanks very much!
I dont have any experience or advice particularly but cannot read and pass by.
I can imagine that you must be terrified and overwhelmed.
At the same time, I cannot understand why your GP/school counsellor/paediatrician are not treating this as urgent...you should surely not have to wait to see any of them.
I would be emailing all concerned with a summary (e.g. what you have written here) so that there is a paper trail of your concerns for him; which might expedite things for you.
Keep posting- I suspect that somebody on here will have had experience that may help.
We have had similar with ds2 (he is 11 so a bit older) only method of choice being plastic bag rather than rope. Thank goodness he does not know about that route.
CAMHS should see your son as a priority, If ringing up does not work take him into A&E and ask to see the duty psychiatrist. This is an emergency!
Also ask for an urgent assessment by social services. They should be able to put in support. They can help you do a risk assessment of your house so that anything potentially dangerous knives, ropes, plastic bags is locked away.
It sounds like even this new school is not meeting his needs. I would read up about HFA/ Asperger Syndrome strategies and start implementing them both at home and school immediately to see if this helps. Is it still a private school? What if any support are they giving him. Can school get an autism outreach service into advise.
By all means carry on chasing up the other medical issues but get yourself in the diagnostic pathway for HFA/AS as soon as possible because it takes such a long time to get going (often can be a couple of years). To do this go to your GP and ask for referral.
For us the most help has come from getting a statement for ds2 so that he is supported at school and social services providing a 'buddy' which has helped to lift him out of his depression. We still have the occasional bad day but it is nothing like as bad as it was three months ago.
I'm sorry I don't have any experience of the strangling, although my ds (now 11 with Aspergers) did go through a phase of trying to choke himself and beating himself over the head with a giant encyclopedia when he wasn't being properly supported at school and couldn't cope.
What I wanted to say was that my ds has gut issues very similar to yours, although without the prolapse, he used to vomit small amounts regularly, had constant diarrhoea, which would often be bloody and severe stomach pain. He was tested for coeliacs, but the blood test was clear (the Paed thinks due to a vomiting and diarrhoea but he had the previous week meaning he hadn't consumed enough gluten to show the antibodies in his blood). He couldn't refer for biopsy without a positive blood result and we couldn't put him back through eating gluten and seeing him suffer in order for him to have another blood test. We kept a food diary and managed to match his symptoms to gluten consumption, so the Paed has said he should be treated as coeliac and he has been gluten free for a couple of years now, with the result that all his digestive issues are gone - unless he accidentally eats gluten, when they quickly return. We were told that the inflammation caused by the reaction to gluten can indeed affect mental health and I do believe ds improved dramatically when we removed it from his diet.
The only complicating factor is that ds still get's bad diarrhoea and stomach pain and occasionally reflux vomiting, when things go wrong - as a result of high anxiety. I honestly believe the combination of the coeliacs/gluten allergy in combination with the stress he was under being unsupported in school was what caused all the digestive issues in the first place.
We went through all the investigations for his digestive issues at the same time as his ASD assessments and I would advise you get going on the ASD referral/assessment immediately (GP first point of contact).
OneinEight's advice is spot on, but you could also check if you can self-refer to the Ed Psych in your area and if you can that might be a way of speeding up his access to an ASD assessment. If the assessment takes ages, keep phoning and asking how long it's going to be, as you may manage to get a cancellation, we did and it shortened the process by months.
Ds's Ed Psych was from the crisis team and she worked in school with him on emotional scaling and literacy, made sure the school started putting support in place even without a diagnosis and stopped them refusing to recognise the problems. She also did the main EP report for his statement (that we applied for ourselves) and was involved in his multidisciplinary assessment.
My 7 year old has done similair. His paediatrician said if we ever feel it necessary, ie he is really not safe then take him to A&E, so I would echo that advice.
I assume the GP has marked the referral as urgent? I would ring and check where it is. Keep hassling. Keep a diary of events, send it to every professional you come into contact with.
I would also pursue a diagnosis too. My ds has aspergers, he also has iffy bowels btw. He is struggling to come to terms with his diagnosis, but he is actually happier now he knows he is not "bad" or "naughty".
Another thing I would do is make sure that he somehow gets the chance to relax - he is probably in fight or flight mode all the time. Can you take him swimming, tramploning, try children meditation apps?
I'm so sorry, it is very very hard.
My friend's son strangles himself and punishes himself often. He is 12 has aspergers. I will ask my friend if they have any advice on how they have dealt with it x
Thank you so much for posting, I really appreciate it! We're trying not to tell many people because we don't want anyone to say anything to DS, so I feel quite isolated, & scared because I'm taking advice from GP, school etc & I'm worried they may not be giving me the right advice, however well intentioned they are.
I'm writing this in haste as they've just gone to the park. I'm very grateful for everyone's advice & support, & hope I don't seem rude by not agreeing with everything!! You've really helped me think about things. I know this will be long, so sorry about that too!
DH doesn't really believe in the milder side of ASD & has refused to believe DS could be on the spectrum until fairly recently. He's finally open to the possibility that DS may have issues that he needs help with, but I can't discuss it with him, so I just tell him what the 'specialists' say & what I'm planning to do. DH thinks I'm incredibly dramatic about DS, it's very frustrating. It also makes me question myself a lot - am I being demanding of the Dr etc. My mum is very opinionated, so I have to do the research first & then discuss with her, although she's very, very supportive.
School completely freaked out when I told them about the strangling incident, the head called us in urgently to discuss it (DS has a sickness bug so we had to wait until after the w/e), but conversely it took her 3 or 4 days & 2 reminders to send me the school counsellor's number/ed psyche. I feel that school (it's a private one) are meeting DS's needs better than any other school could, except possibly a school that specialises in Aspergers/emotional/behavioural issues, although it's not perfectThere are 5 kids in DS' class, they are very involved & very caring with all of their children & their families, there's a lot of outdoor play, DS's attitude, behaviour & learning have dramatically improved since he started there, we had a 2hr long meeting with the head & SENCO, they have offered lots of advice (get a dog, don't have play dates longer than 2hrs, only speak English at home...) etc. They aren't happy that we don't want to have the Aspergers screening & then get all the support that will come along with it straight away, but I think they will accept waiting to see what the EP's advice will be. There is another boy in DS's class who is waiting for an assessment (DS's teacher said they're very similar), but unfortunately his parents are thinking about moving him to a school closer to their home as they will need to start taking their DD to school as well in Sept (she does have Special Needs). I really hope they don't as I think it's really good for DS to spend a lot of time with someone similar to him. DS is behaving badly in 3 classes, & I'm worried school will say they can't keep him because of this. We feel that if school think DS has Aspergers they can work with him as if he has, they don't need a confirmed diagnosis immediately.
At Reception I tried to get him into a local state school that had a really good special needs dept because I felt he had issues, but they were full (I appealed their decision too). I paid for his first private school with my credit card (& with my mum's help) because I don't earn much & DH felt he'd be fine in any state school he was offered. When he was diagnosed with possible dyslexia DH agreed to pay for his current school, but was talking about putting him in a state school over Autumn (he can afford private, but he doesn't think it's morally right, neither do I, but I felt there was no option). Now I would be very surprised if DH said he wanted to take him out.
School's ed psych called a couple of days ago. I had a long chat with her. We have a agreed that she will do a short assessment on DS. 1st session with me to discuss the issues, 2nd & 3rd with DS, 4th with me, DH & my mum, & 5th with the family, head teacher & teacher. This will be to make sure we are meeting his needs at home & school until Sept (when I'm planning for him to have the Asperger's Screening). Unfortunately she can't see him until the end of April, so we will have to wait. I feel very positive about her. She will tell us if there's anything she thinks we need to do as soon as she sees DS, she won't wait until the assessment is completed. She agrees about his gut impacting his behaviour, so hopefully she'll persuade school that waiting is best.
I don't want DS to be screened for Aspergers until his gut health is better as I feel he will behave different when his gut health is better & I know the Asperger's label with stay with him throughout school so I want to be sure his gut doesn't have any involvement in the results, but I want to be sure we're meeting his needs. I know this isn't everyone's school of thought, but I believe DS's vaccinations (combined with his genetic disposition & a couple of other factors) caused his severe silent reflux, Aspergers traits, poor gut health etc.
I'm a bit all over the place re CAMHs. GP said I should go with them rather than privately because private will be hugely expensive & If I go privately CAMHs won't offer much because they will feel we can pay to go privately, Ed psyche said CAMs won't be able to offer much in terms of counselling because of budgets & that they will want to do the Asperger's Screening straight away to best to put off, & my mum thinks CAMHs are a complete nightmare & that we could end up with SS being involved (SS became involved with our family yrs ago because of a member outside of our immediate family & I found them very ignorant, I definitely don't want to have anything further to do with them). I have decided that I will see how it goes with the EP first.
We had a rubbish paed gastroenterologist for DS until recently. He did a PH study (found no reflux, but I've realised from researching that sometimes kids can go 24hrs without having an episode), colonoscopy & endoscopy. He found the ulcers, but offered no advice re the bleeding & prolapsed. He put DS on antacids for 6wks & said come back in 6mths. We've emailed & called about 8 times since Dec & he hasn't got back to us once. DH finally agreed that we could take DS back to Dr Shah @ GOSH who specialises in allergies. We saw him in the Autumn (before we realised DS had ulcers) & said he thought the bleeding & prolapse were caused by allergies & said he should go on a soy, dairy gluten & egg free diet & put us in touch with a paed dietician. We couldn't keep seeing him (it's complicated to explain), but have now been referred back to him & DS will see the dietician in a couple of wks.
I'm afraid it's not possible to know when he's really not safe as it could happen at any time. We have to just not let him ever be alone. I thought about putting his mattress in our bedroom, but he might realise he'll get more attention because of the behaviours & our bedroom's on the top floor so I'd need to go to bed at the same time as him. I've removed everything that he could harm himself with & will keep on nagging DH to
Moosemama, are you tried taking out dairy, egg & soy (apparently they tend to be the main culprits)? I did a Yorke Test on DS when he was 18 mths, but our naturopath says that & blood tests in general aren't able to flag food issues unless they're allergies (DS was allergic to egg, he would vomit, he stopped vomiting so I assumed he had grown out of the allergy, foolish me).
Thanks so much for your help, advice & support!!!!
Sorry, also to say I've tried Shetland pony riding, martial arts, football, rugby, boxing (his granddad used to be a boxer), drama singing & dance, tennis, going for adventure walks, iceskating & chess, but he's not into any of them. He likes swimming (only pools with slides etc), but gets lots of colds/coughs, so we can't always go. GP suggested rowing (as his hand to eye isn't good). Not being good at things affects his self esteem, I need to find a hobby he'll really enjoy & be passionate about. I'm going to try trampolining & have someone looking at the possibility of him walking rescue dogs (he loves cats & dogs). We go to farms with adventure play a lot. Outside of school he only seems to enjoy playing games (I'm trying to play loads), computer & tv. Does anyone have any ideas for activities that he might get into please?
Thanks Levantine, I just ordered a meditation cd & a relaxing music cd!
You're (currently or potentially) bankrupting yourselves paying for private schooling, not because you want to, but just so his SEN will be addressed. Life in the UK generally getting is more costly, and SEN-life is even more so, hence I think your first priority might need to be finances.
From everything you've posted, he is entitled to the non-means tested DLA (anything from £21-£135/ week, depending on his particular needs). And regardless of your DH's income, if you're not earning much yourself, you'll probably get carers allowance (£59/ week). It isn't necessary to have a firm diagnosis, and it's ok to have a mixture of physical and behavioural needs.
It can be hard to describe things clearly on the forms when we're used to overcoming challenges: we usually don't notice that 'our' normal weeks, or 'our' good days would be considered many hours of hard, specialised work by anyone else Cerebra shows you how to explain about the behavioural stuff and Crohns and Colitis gives examples of how to explain bowel stuff.
Given you must sometimes need the loo, would a nannycam system be useful?
OneInEight really does give good advice. Your worries about being rapidly railroaded into an unnecessary diagnosis are just that: worries.
I've never yet seen services diagnose ASD when it wasn't present; but locally I've seen dozens of families where diagnosis was delayed for years, or never given, despite the parents being (to my eyes, anyway) correct in saying that their child's ASD was so obvious, the milkman could spot it.
Also, I know its not what you've asked d about, but your child would be entitled
to a radar key which enables you to access disabled toilets in public places if queues are a problem and you're in a hurry! I have ulcerative colitis and have one of these keys, its been a bit of a life saver...
We know he's sensitive to dairy, so have to be careful with that, but haven't completely removed that or soy or egg from his diet, as he's a staunch vegetarian (think ASD rigidity) and will only eat one type of nut, so that would remove just about all of his protein sources.
His gut health is good these days, unless he goes through major stress, as he has just done, when the reflux and diarrhoea return or he accidentally eats some gluten. Even a mouthful of gluten is enough to give him a really bad stomach.
I have to agree with Maria, I have never seen a child dxd with ASD inappropriately, it's actually more likely for a child who has ASD to not be dxd than the other way around.
I understand what you're saying about labelling and it staying with him etc, I was the same in the very early days, but came to realise that a diagnosis/label is actually nothing more than a signpost to the support ds needs. Not having a label would make his life incredibly hard, leave him un/under-supported and misunderstood. Getting his diagnosis was the most positive thing that has happened for ds and the turning point in terms of us finally getting a handle on how to help him and get the support he needs in school. He is still ds, nothing has changed, but getting the diagnosis has helped us to understand him and identify what his needs are and how best to support them. When we told him about his diagnosis, which wasn't immediately, he was just relieved to finally be able to understand why he has always felt different and that it's nothing he's done or is doing wrong, it just is what it is and we can help.
My ds is also in a mainstream, independent school, but has a statement and his place is funded by our Local Authority. My concern is that independents don't have to stick to the rules and can drop support at a moment's notice without any comeback. No matter how helpful they may seem to begin with things can and do change, be it changes in your ds's behaviour that makes them reconsider or for example, a change in management to one who no longer want to support SEN. Even with the school having signed a contract with a Local Authority to provide statement support, they can still be a law unto themselves.
Please get your ds diagnosed as soon as possible. Don't wait until you have other medical advice re physical symptoms. It will take months to get access to a paediatrician as it is.
My ds has AS and also suffers from reflux. He is allergic to peanuts and gets asthma. I think there is a connection between AS and reflux, my ds's bf also has reflux and is on the spectrum. My DS had a endoscope which led to the reflux diagnosis.
The sooner you a diagnosis the better. I would also recommend you read up on AS, Tony Atwood's book is v good. Your DS appears to be very anxious, it might be related to problems at school. My ds is at senior school now but if I was starting out again I would have home educated for a few years. Your ds will be the same boy with or without a diagnosis but you will stand much better chance of getting appropriate support with a diagnosis. Good luck
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