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DS anxiety/meltdowns/oddities could now be my fault.........

(18 Posts)
coff33pot Mon 30-May-11 19:04:55

Dont know where to start other than I have been upset, angry, stubborn and just plain pissedoff.com!

DS will be 6 this month and for the last 18 months been nothing short of hell in his behaviour at school and trying desperately to sort some sort of normality out. He is on SA+ has an IEP, had an EP visit him but only for half an assessment due to her going of sick and being the ONLY one for our area. So we have half a report being done. Behaviour specialist has come into school on two occasions. First for ideas on how to combat bad behaviour and the second time to actually spend time with DS and came up with the same conclusion as I have of the fact DS possibly has AS and gave the school more detailed help on this subject. None of which worked as the school are adamant they will do it their own way.

I was fed up and battled it to get CAMHS to see him. First assessment in April went well and the woman said she will put her findings before a disiplinary team but it is looking that DS has AS. She then send me pages upon pages of questionaires to fill in including one about AS. I dutifully filled them all in and sent them back. She visited DS at school and her findings are that he has little to no child interaction in playgrounds, class etc. DS is 1 to 1. The school are determined to try to intergrate DS back in a full class enviroment by the end of this term so that he "starts normal" in september. Which I know wont work as he cannot cope sitting at a table for a few minutes with a few peers let alone permanently in a whole class! Needless to say he has spent more time hiding in a cupboard or under the table and has now turned violent to get away from the teachers endlessly trying to drag him out of his hideaways instead of leaving him where he is to calm down.

I then got a letter from CAMHS woman saying after an indept convo with the head/senco I needed to come back for a further assessment with my DH. That very day my DS was excluded from school for bad behaviour as he allegedly threatened to throw a chair at a teacher because he didnt want to leave the cupboard. (there were three of them creeping inside so he was cornered)

The Camhs meeting did not go well. My DS is obsessed with killing and guns and turns into Ben 10, Soldiers or some other character with a gun. So they now think his violence is my fault thanks to the school going on endlessly about his gun issue. So I explained that I have pin numbers past 8 oclock on all channels of tv so he doesnt watch violence. he has played tombrader as he loves the skills of leaping around with his dad and yes there is the odd bat to shoot but no humans. Also he only plays the training game which is swimming and climbing and sumersaults so yes he play acts doing that. I have stopped him playing it for the last 8 weeks and so he has moved onto pirates after seeing clip of pirates of caribean on tv. So now he is swashbuckling instead bearing in mind all he has seen is the clip!!! He has plastic soldiers to play with with his grandad as normal boys do. The school are going on and on and on about his obsession rather than the fact that he cant cope with school full stop! I have prepared visuals and laminated them for the school as he likes lists and loads of other ideas and even bought them a book called 10 things. to try and help them understand my son. He works well with visuals but they need to prompt him and show him visually to keep him on the straight and narrow but they dont and put them to one side and STILL try to reprimand and encourage verbally when he has too many sensory issues going on around him and so he shuts himself away and becomes "another person"

Now at the meeting they put forward the possibility that because he didnt open his eyes till he was officially due there could possibly have been a problem of me actually bonding with my DS UTTER CRAP!!! and possibly my DS is suffering anxiety issues because of it.

Also the fact that I had post natal depression has made it difficult for my DS.

The fact that my DH was there at the time to help doesnt seem to matter.........

As I was sat there trying to make them see that this was not the case I just plainly felt myself drowning. She then said she was sorry she had to ask???? why ask??? when in the same sentence she said she can see we have a great relationship with DS from our first meeting without even having a home visit and how much he is close to us. Then to make matters worse he needs to be seen by a Psychiatrist and guess what........................they have to employ one yet and that could take months and she said she is loathe to help out the school with any specialist help before he has been seen by this invisible not yet employed person!

Now I got a email from school asking for a meeting to discuss this appointment. As they have said they just cant cope with DS and he needs specialist help. When I phoned them to discuss it the first thing they came out with was "what did they say about the gun issue?" NOT ABOUT HIS POSSIBLE DIAGNOSIS OR HIS WELFARE.

sorry guys this is totally out of any correct order and probably looks like mumbo jumbo but I am starting to get to the banging my head on a brick wall senario..........

bochead Mon 30-May-11 20:48:17

There's lots in your story that mirrors mine.

Here's my list of suggested actions:

1/ Get thee to your GP ASAP and demand (don't ask!) for a referral for an ADOS assessment with a developmental pead (ADOS is an autism test and is run by a multi-disciplianary team overseen by a developmental pead). Also ask for a referral to an OT that specialises in sensory issues.

2/ Write to your LEA SEN officer today, requesting that your son be assessed for a statement of special educational needs.

Oddly enough your son's exclusion at such a young age actually helps PROVE that the school needs additional support. The statement process means that there is a time limit mandated by law on how long the lea has to complete ed pysch , salt reports etc and really look properly at your son's needs. From start to finish it takes 6 months so under circumstances let anyone talk you into delaying (I guarantee someone will try!). 6 months is plenty of time for the various agencies to pull their fingers out in my book.

Keep a diary for yourself of all incidents in case you need it to show the dev pead or an education tribunal at some point in the future.

Lastly hold your head up and remember "blame the Mum" is a routine so many of us go through that frankly the next "pro" that tries it on me is going to be asked point blank why they are so lacking in originality as it's boring. You are being given the run around and they know it so try to deflect their own inability to DO anything to help your kid by blaming you.

Just keep calm, carry on and make the official requests via GP and the LEA for your son to recieve the help he's entitled to.

coff33pot Mon 30-May-11 21:21:59

Hi Bochead thanks for the reply smile

Well i am going in circles at the moment as the school has been allocated 15hrs for 1 to 1 care and this is without a statement. The school is pressing for an actual Statement but the Ed psych has failed miserably. She called to school and did cognitive skills test and some other puzzle tests with him and they were for a 7 yr old and he was just 5 at the time. he passed all those.

She then went off sick and the ball was then left in my court to deal with it. The school are having her small part of a report drawn up by the head of the EP department as there is no one else and she will be sick for some months yet!

I have already been to GP who was good enough to write to a Clinical Pead and get me an appointment. BUT the pead decided it was not her proffession and refused to see DS and she automatically referred him herself to CAMHS without seeing him.

I do have a diary by the way of a home book from school and I have kept them all and have shown two to CAMHS. This is the second time he has been excluded from school now in under a year. I have managed to persuade the school to let me come up and calm him on a few occasions when they are at a wits end and he manages to stay there if I do.

All in all this last meeting with CAMHS seemed to be just a time wasting wind up to say the least apart from the fact that they will do a report for me and send a copy to the school to assist them in their statement hunting. But the thought that the school will know my personal business with regards to post natal depression is just tooooo much info I am willing to part with.

bochead Mon 30-May-11 21:31:10

I get you - Cahms released info to school re my ex to school that I didn't want shared to all and sundry especially as he's never lived with us so is irrelevant to my lad's issues.

Make that statement application - I found it helped cut thru some of the B%$*&. Ask for a referral to a pea with an autism speciality and a SALT.

coff33pot Mon 30-May-11 21:58:13

I will ring docs tomorrow and try again to get someone else. It is stupid that DS has to wait for them to employ a psych for him to be seen. I did ask could they not call in a relief from somewhere as there must be a lot of other kiddies needing help and having their help suspended like this. But her answer was that the relief was on another job so to speak.

It is so frustrating to think that this is going to hold everything stalemate for quite a while. I am definately sure I am not the only one tho............

There was a suggestion of taking his guns and his plastic soldiers away and I said what about his lego? he makes guns out of that too or how about stopping taking him to the woods for walks as he uses sticks as arrows like robin hood too or dont let him change the toilet roll as he uses the empties as Ben10 omnitrix watches.........you could go on and on. Think I will just put him in a dress and let him play with dolls. It is bad enough that he is odd at the best of times to peers without taking their similar boys interests away so he has no link with them whatsoever....I have tried curbing which kids programmes he watches but to be honest everything his age now has some sort of zapping or powing going on. And he cant stick to peppa pig for the rest of his life.

pinkorkid Mon 30-May-11 22:19:54

hi coff33pot,
your situation with camhs needing to appoint a psychiatrist resonated with me as our local camhs were without a permanent consultant for a year. However during that time they did have a series of locums who saw our ds regularly. While this is not ideal from the point of view of continuity, they cannot run their service without a resident child psychiatrist.

I can recommend 1) putting your concerns about your child's needs not being met in writing and 2) using PALS (patient advice and liaison service www.pals.nhs.uk/ as offering useful support in persuading camhs to speed up slow service. It should also be possible for your ds to be seen by a neighbouring camhs if his case is urgent.

Also they should not release any personal medical information about yourself or your son to a third party without your express permission. For peace of mind you could remind them of this in writing too or ask them to reassure you that this will not happen. We were asked for our approval to pass reports on to school and were able to ask for an edited version to be passed to school which allowed only information relevant to ds education to be sent.

Also think bochead is absolutely right about requesting the assessment of his sen asap as the lea will have to keep to the statutory deadlines whether or not their current ep is off sick. They will have to appoint a locum ep to cover. It's well worth getting a copy of the sen code of practice to know what should be happening, when. www.education.gov.uk/childrenandyoungpeople/sen/sen/guidance/a0013160/the-sen-code-of-practice hope this link works, otherwise there are links on ipsea and sossen sites.

good luck - let us know how you get on.

leiela Mon 30-May-11 22:25:23

Oh dear....

First off breath, as someone has said blame the parent's is usally the first stop .. many of our kids have obsessions it's just unfortunate yours is guns which always get's people abit more nutty than usual.

If it makes you feel better, one of my son's "things" a few years ago resulted in me and my family having to explain to SS that i was NOT committing sexual acts on my son!!! It took us alot of explaining to get us out of that hole belive me.

I was so upseting for all involved, my OH who arrived at the school to find SS there to be told school belived i might be doing things no decent human being should and me having to explain myself and then worse face school and the teachers again... horrible... i very almost pulled my son from the school rather than face them again, untill OH convinced me them being overly careful was better than leting a child in need slip though the net.

Chin up im sure you are doing all you can in a horrible situation, try not to let it get you down. People are always looking for someone to blame your unfortunatly the easiest target.

mariamagdalena Mon 30-May-11 22:30:04

Coff33pot, don't just phone your GP, actually book an appointment and go in. If your DS might conveniently display some behaviours then bring him along, otherwise go by yourself. Feel free to cry in front of them. It might even help.

Before you go, google the paediatricians working in the hospitals round about. Itll make life easier if you know who you want your ds referred to Neurodevelopment or neurodisability are likely to have access to ADOS testing. And if your GP knew you during the postnatal depression, ask him or her straight if it can cause autism. Obviously they'll say no, and you can raise your frustrations with feeling blamed for your ds's problems.

I dont know how severe your bout was, but as you say your partner was about to compensate in any case youd have needed an exceptionally severe and prolonged depression to cause such major problems. So it might be useful for your GP to write to Camhs with an accurate depiction of how you and your family were during that time. Or maybe the old health visitor could?

Finally, who were you all seen by at Camhs? You say they don't have a psychiatrist which is very unusual. I presume it was a nurse, social worker or a psychologist? The first 2 can't make a diagnosis, and only some psychologists can, depending on seniority. It sounds like you didn't get any multidisciplinary assessment and I'm wondering about their asd experience. Please don't feel bad about your DS seeing a psychiatrist (if you ever get the chance!) cos in some areas they're the main asd specialists.

pinkorkid Mon 30-May-11 22:32:11

Cross posted a bit with you re them needing to call in a locum. Being under pressure with staffing and budgets makes cahms appear at times to offer a crap service - but you mustn't let them put you off with what are essentially excuses. Looking back over the last 18 months with ds unable to attend school for a lot of that time, I wish I had got pushier earlier because he only started to get his needs met when I did.

Also the worrying about toy soldiers sounds a bit ott, if kids like to play fantasy fighting games, they will as you say turn a stick or pencil into a toy gun or sword - that all sounds perfectly age appropriate behaviour to me.

coff33pot Mon 30-May-11 23:14:55

Thanks for all your support and ideas all are much appreciated!

@ leiela my heart goes out to you in having to explain yourself in that situation as that must have been absolutely awful! And I know how you feel about wanting to keep your child away afterwards. It the fact they thought it that gets to you as it is with me at the moment.

I am in two minds to not send my DS back to school or suggest part time school mornings only for the time being until they finally help DS properly. I have prepared visuals in the basis of a Job Chart (his reading etc) Fun time chart (PE, dinnertime,playtime etc) and Bonus chart for the teacher to tick for good things like saying sorry, not running away, listening, helping others etc. DS knows ticks for good and crosses for not making the goal and this helps him with his day, and wall charts and even a good behaviour lucky dip that he can dip into if he earns 6 stickers (one morn one afternoon). I have explained to them if he is on a meltdown and runs under a table to just leave him there till he calms down but they are insistent he has to be pulled out and has to choose a time out for himself! Try telling a NT child having a tantrum that and you get a negative response. Telling that to a SN child on meltdown he is already deaf to you and anyone else until it blows over. He will accept a consequence after the effect once calm.

@ mariamagdalena We dont have personal GPs anymore that is the problem. And the one I had retired lol! You get whatever one comes up down here or wait a while as most dont work full weeks anymore. My first post N depression was actually mental abuse by my ex hub. I just kept my mouth shut and let the docs put that down (stupid but I was younger then) my second bout was purely because my ex had walked in door to see his daughter who was eleven then. But he arrived the same day I brought my middle DD home from hospital and it was a trip back in time. My poor DH came home to see me a wreck as I was convinced I was doing a crap job and he will shout at me sooner or later. I jumped every time he spoke poor man. Of course I wasnt but once scarred that way your self esteem has had such a kicking its hard to shift. The third time with DS I already knew the signs and went straight to docs myself and DH was already prepared and had changed jobs to he could be home more so all was ok. There was no way it could have affected my DS. Its just all past things that I want in the past. I can print it here because no one really knows me iyswim I dont see why the school need to know so I will contact them about an edited version as pinkorkid suggests!

The person I saw at camhs classes herself as a Child Mental Health Professional at least that is what is on all her letters and it is her that has assessed DS in school and did the initial assessment and the last one. It was she who said she was compiling all reports and assessments to be referred to the Multidisiplinary Team. She said it is made up of 5 different people. The Psychologist is the missing number 5 by the looks of things........

justaboutWILLfinishherthesis Tue 31-May-11 08:59:54

Message withdrawn at poster's request.

mum0fthree Tue 31-May-11 09:32:51

My son has a similar obsession, although his are weapons of any description. he has the superscribblenaughtss game (DS) and only ever put weapons in it. We had a physio home visit and DS was playing with his castle think she was a bit surprised when told her this is a trebuchet. He isn't violent at all though, his are more emotional outbursts.

The school brought a playtherapist in, he had done a drawing with swords etc and she commented that it was very relevant that he had drawn in red and black. I also felt disbelieved re: the violent games/programmes. She was adament that he must have access. She wouldn't have it that we wouldn't allow it plus he would actually be terrified of anything like that fgs he won't watch BGT because he finds that scary.

Al1son Tue 31-May-11 10:24:18

Coff33pot it is really hard not to take all these thing personally but CAMHS wouldn't be doing their job if they didn't at least consider whether your parenting skills could be wanting. Children with attachment disorders can present in a very similar way to children with ASD. CAMHS questioned both of these things with both of my daughters before giving them diagnoses of AS. I have been on a parenting course in order to keep them all happy but I knew 10 times more than the trainer and had to bite my tongue before I ended up leading the course!

I think you are right to insist that you cannot control your DS's play just because his deep interest is guns. I know that to the uninitiated it looks destructive and unpleasant but there are benefits to allowing children to explore this type of play and it is very supportive of your DS's social interaction at the moment. He'll learn far more from this than from any artificial social skills group and it will boost his self-esteem. If you were successful in moving him on to a different obsession he may well choose one which causes him to be much more socially isolated.

Have you contacted your local parent partnership service? They can't intervene on your behalf as such but they can give you advice as to how to get the best support for your son and they can come and support you in meetings. It's amazing how much more helpful schools can become when PP representative is present.

coff33pot Tue 31-May-11 13:38:27

Well I phoned the health proffessional that we saw and asked her to edit out any part of her report that was personal to myself and she promised she would do that and also send me a copy first before it goes to the school so that was nice of her to do that. At least I got somewhere there.

As far as parenting skills go I am an old mum lol and have 2 NT children 21yrs and 10 yrs as well as my DS who has the problems. So I pointed out to her that my other two have been brought up the same way with no issues whatsoever to do with my parenting apart from the normal stroppy teenage years with my eldest where they turn into aliens instead of children for a brief moment grin

What also annoys me is the Head/senco has taught all my children and so knows me as a mother and has known my DH for the last 15yrs! I do realise these professionals have to ask questions but why not look at my history first hmmm which is totally clear so why would I now all of a sudden not know how to bond with my child. He bonds with adults too easily from teachers to a man on the street. His issues are with his peers unfortunately and I told her he went to nursery when he was 18mths so was among children most of the time but he had 1 to 1 care there as they had enough ppl to do this with at the nursery so no problems were detected. It wasnt till he went into an older group where he had to amuse himself on occasions and mix more without a carer that the problems showed. And he didnt have guns/weapons/games then. He would still run an hide but it was always to the sensory room they had there.

I have pointed out to the school that they need to provide a quiet/sensory area for him and any other child at the school but they seem to keep saying he is the only one there which I know is not true as there are two I know of with ADHD that could well benefit from such a space being given. His 1 to 1 teaching is sometimes in the main hallway and he is expected to sit and read/spell/write with the office bell going on the main door, PE going on in the hall and visitors walking past. Sometimes he gets to use the library if there is nothing else going on there and it is the library he trys to run too to get under the table.

Sorry another rant I know lol xx

Al1son Tue 31-May-11 13:59:30

I can't see why the school thing that your DS being the only one who needs a quiet area is relevant! If they had just one child using a wheelchair would that mean they didn't need to install ramps until some more came along?

Your son needs something to support his well-being in order to allow him to be in a fit state to learn. It is their job to provide it. End of conversation!

Have you considered any other schools?

coff33pot Tue 31-May-11 17:45:35

No I havent considered other schools yet.....All in all it is a lovely school and my other two children were happy there but they did not have the issues my DS has. This school is just totally green when it comes to special needs of the autistic kind. The head told me this and said she has never experienced it before. So I told her to do what I do and research Aspergers, buy books and stop poo pooing my suggestions as I am as green as she is but at least some of the research and ideas have helped my DS at home so she could at least give them a chance at school.

Even if my DS does not finally get a dx of AS he clearly has autistic traits and social and communication problems that are so blatantly obvious so he is going to need all the help he can get.

Al1son Tue 31-May-11 23:34:39

The head should be getting the Autism Outreach Team in to advise them. A dx makes no difference the whether he qualifies for this support but in some areas he would only get it if the school buys into the service. You need to ask you head whether they buy in and if not request that they do so.

You son needs this support and they should be getting it for him.

coff33pot Wed 01-Jun-11 00:20:31

Thanks very much for that info Al1son! I will get hold of the Head as soon as term starts! smile

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