Ok here goes...

[DayShiftDoris]

right I've been lurking awhile it just feels massive to put in writing.

Had a really bad day but it's ME having the bad day not scallypants (DS aged 6) although my bad day ofcourse rubbed off on him.

Start at the beginning shall I

Right Scallypants has always been a handful - I am the parent being pulled in by the teacher and that started at nursery. He is very loud, very bouncy, lacks concentration BUT he also lacks confidence and is often quite insecure and has been since he was very young (when he was 3 he told me his auntie had 'gone, not coming back' because he hadnt seen her for 6 weeks - she was away). He is 'rountine boy' and always has been, even has a baby he breast fed 2-3 hrly and slept most of the night and he hates changes to routine. Changes have to be almost negoitated and unsettle him.

He struggles to make and keep friends, adults find him difficult to deal with and I've lost count of the number of social situations I have had to remove him from.

So we got to school. He struggled to settle but mostly reception was scraped through with not to many war wounds - all of the above were mentioned on many of an occasions and he had a couple of visits to the head but it was ok, just...

In the summer things deteriorated with his childminder to the point where she asked me to find alternative arrangements which I did - he wasnt really any worse than he normally is it had just worn her down over a long holiday.

Year 1 was a hard... by Jan I was having regular meeting with the head. Things calmed a bit but at the parents evening in March I was told that things were bad - he wasnt finishing work, he was disruptive, distracting other children, disrespectful to adults and they suggested referring him to comm paeds which I agreed to.

Two weeks later they suddenly changed their minds.

I know! I know and the school year got worse! Scallypants developed a very negative relationship with a child in his class and the two of them were at loggerheads - this was disrupting the rest of the class and the school tbh didn't deal with it well - the teacher announced to the class that the 2 boys mustnt ever speak to each other!

Come the last term of the year I was dragging Scallypants to school every morning, literally dragging to school. He was barely dressed most of those mornings and often late. I discovered later he was hiding uniform (I thought it was lost!). He was very unhappy. Home life was miserable too. The school were dragging me in on minute but not keeping a home-school diary the next.

Anyway we got to July and things were pretty awful then outside of school he hit another child and really hurt them. I went to the school and demanded a referral to comm paeds. I was beside myself that my child had hurt someone to that degree and all the head could do was be defensive about their care of him!! WTF - I didn't care what had happened to that point I wanted to the future to be different.

Anyway enough was enough with the school - as much as I liked the head her response was defensive and I forsaw a battle plus I got wind they were planning to split him from his best mate when they moved to yr 2 (infact they had asked Scallypants which 3 children he would most like to in class with and it turned out they had moved him away from all 3) which would have DEVASTATED him... so I started to look for a new school though I knew it would be a MAJOR MAJOR issue for him and it was done after much thought, I had been considering it for a long time.

I found a smaller school. The head had been given a run down by the head of his current school and she was not keen to take him. I laid it on the line - how he was, how I found him and that I planned to signifficantly change how I operated JUST to get him settled. She agreed to not only take him but promised to give him a fair chance too.

So new school plus had my referral to comm paeds and for good measure I saw the GP who referred to CAMHS too.

First term of school went well. Too well almost as school started saying there was nothing wrong and when it would come to assessments from comm paeds they would say there was nothing wrong... Sounds awful but I was devasted and burst out crying. The head thought I was depressed!! The Gp decided that I was hideously stressed!

The thing is in order to give him a good chance at the new school and baring in mind what he might be like - I gave him exactly what he wants which is strict, strict routine, I dropped hours at work, I dropped the small amount of social life I had and the only flexibility in his life was a flexi shift once a fortnight. I live to a timetable and have no social life.

The head was horrified but didn't want me to stop!! LOL so on it continued... the school was yet to see behaviours as bad as I had 'promised'

Oh yeah - comm paeds were waiting for the end of term then school do assessments (but comm paed is a bit hit and miss!) and CAMHS had bounced the referral after a telephone conversation.

Half term - no structure = awful - nuff said.

The last half term Scallypants unravelled... almost every entry in the (very well kept diary) was him disrupting lessons, poking other children, hitting, being loud... basically cant work in a group without an adult.

He had no IEP, no school action plus... nothing and yes I know he should have but I biding my time.

Then one day I walked in the classroom on collection and he was being restrained... he was being restrained properly by a properly qualified member of staff and have seen Scallypants in a rage enough times to know that he needed restraining. Took me and senior staff member 40 mins to defuse the situation.

The fallout was initially very messy between the head and I but after a 2 hour meeting we have a new level of understanding. The main outcome was a CAF

The CAF she has written is very very good.

One of the aims is to clarify if Scallypants has ASD and / or dsylexia. She also thinks we need family counselling because of some events in his life (and the way he is!) have possibly caused an unhealthy need for me to there in order for him to feel secure.

So there I am it's all moving, I have a supportive school - they even helped with a timetable for the holidays.

Ok so the holidays - the timetable has made the difference - he has been much better than half term - still a few issues and a couple of really bad blowouts... mainly because (and I know it was such a bad idea!!) I changed the timetable and worked a different day to what was planned. Since I changed that he has been VERY difficult and refused the timetable and had 2 major kick offs. And when he kicks off he violent towards me.

I don't want to say too much about my job except I am in a privilaged position re a flexible working agreement and so feel I need to give a little when I reasonably can and I made a bad judgement about being able to this time.

So today...
Well today he wasn't that bad but he had refused to go out for a few days and I finally got him out... 15 mins later we were back and I had lost it. It was normal low level nonsense but I over-reacted

I am a single parent, social situations are tricky for him, christmas is difficult for me anyway as my support network (what it is) are busy with family, etc and thus I had a timetable full of nothing for me.
I have been out socially once in the last 6 months.
Being a single parent means past bedtime I am in for the evening.
Normally I cope by seeing friends whilst he is at school but in the hols its more difficult and xmas trickiest.
I haven't seen another adult since the 30th.

I rang a friend in bits and she just told me I needed to live with it... which is true but you know I don't think I'm strong enough anymore. I feel very isolated.
Luckily I spoke to another friend who just told me I wasn't going mad but perhaps I was over-reacting.
Another friend with a SN child is meeting me at soft play tomorrow as it's on the timetable to go and I hadn't arranged it and Scallypants (probably the trauma of having a psycho parent) decided he wanted to use the timetable again.

I feel like there is no light at the end of the tunnel - I made the decision to change my life for him (tho never had much of a social life) and it's almost feeding his behaviour but I cant just stop as he is atleast fairly managable whilst I live like this.

Beginning to seriously wonder if I haven't just caused the whole problem myself tho I am told not by friends... well they think I am bonkers for not having a social life.

In answer to the questions... yes I have family in area but he struggles going there so it's kept to bare minimum (once a fortnight when I work flexi) and I cant afford a babysitter and to go out nor do I have friends who can babysit for me on a regular basis and my job is such that i have to save my favours for emergencies.

I warn you now I am feeling rather negative and blaming myself so be gentle.

Have read, will be back after work.

No blaming yourself. Blimey, you're a single mum, you're doing so much to help him and get answers for him...from what you write I think he has a brilliant Mum.

OK, couple of quick thoughts from me (you may know from other posts that I'm in the middle of the autism spectrum and also a mum). Re him possibly being on the autism spectrum - you might as well assume that he is and treat him as if he is, and see if it makes any difference.

How to get us to go to a social event...
Advance notice - put up a sort of visual calendar on the wall with pictures to show what will happen when each day. Might help generally.

On the day that you're planning something different, lots more detail - Google is your friend for this so if your computer can handle it, get Google Earth and its fantastic Street View going, and find pictures of the exact place you're going to socialise. It'll usually let you look at the house/building from almost all front and top angles with him so he can see exactly where you will be.

Transport - visual stuff for how you will get there and what sights he will see on the way there and back.

Clothing - let him choose what's comfortable. No major changes. A heavyweight coat or jumper to wrap tightly round him can really help some of us to settle. A baseball cap can help some of us too, because it's sort of settling to feel the even pressure on our heads and it cuts out some of the light glare.

Sunglasses can help too, as can soft earmuffs to help block a bit of the sound out. Practising at home with this stuff first is probably wise, in case it doesn't work.

Make the timings really clear, and also the alternatives, e.g. work through a drawing of events with him on a map maybe, and talk it through..."We shall leave at X, get on the bus between A and B time, be on the bus for between C and D time, get off the bus, walk to the house which you've seen on google, stay for half an hour/between half an hour and an hour, walk back to the bus, be home between E and F time" so he knows how long he has to cope there. Taking a sort of egg timer thingy with him that shows how much time there is left for the visit can really help some children.

Is there a quiet space there he can escape to, away from social noise and interaction? Can you draw where it is, for him, or can a friend send you a picture of the rooms in the house so he can see what it's like?

Can he take a favourite toy/hobby with him that you can guarantee other children won't try to touch or take away from him? Sounds odd for a social event but we panic if people we don't know well touch our things.

I'd get friends to stop using air fresheners etc in their houses if they can, as they smell so strongly for us. And strong perfumes etc. And not try to talk to him much unless he offers a chat to them.

In other words, tons of detail of each part of the day, and as little light/sound/smell/social stuff as possible, and keep to that routine.

I think I need a cup of tea myself after all those thoughts, but it often works, and if it gets you to see a friend or two without meltdowns, great.

PS I'm not sure that he's clingy because of family trauma - very often the world is simply so painful and so scary for us that a favourite parent is the only known thing there is. If he turns out to be ASD, that might be a reason. His confidence will come with a full diagnosis and therapies and support and strategies, I suspect.

you are dealing with so much on your own and fighting his corner for him. No wonder you're worn out. I don't really have practical advise as my ds has other issues but what amberlight says sounds like a good place to start. what about contacting parent partnership and seeing if they can help you with the school? www.parentpartnership.org.uk/ Can you get referrals to paeds through your doctor? It really does sound like you need some professional help to try and help him without losing yourself in the process. Stay on MN for moral support. Hope things improve for you soon.

Amberlight

Thank you so much... that is some insight. He doesn't seem to use anything to make himself better apart from me. Sometimes when I collect him from school he's got this wild look in his eye and clings to me like I've been gone years. He's never had a favourite toy or book and tends to very easily just let things go without a second thought.
Things like TV, wii, DVD's if I let he would watch / do all day and at top volume. NY's day he spent FIVE hours listening to harry potter audio books - I figured it was ok because it was literature.
The stuff about a google is brilliant and will help and planning social intereactions... I have never done that and it may well help.
More planning... crumbs - did I mention I'm a sort of easy come, easy go kinda girl!!

Ohmeohmy
Sorry mine is a long post - school are pretty good and it's moving well in terms of him and me getting support but it could be a couple of months before I see any real change!
I will stay on MN though - Thanks x

You'l be needing a large cuppa to go with that extra planning then . If it's any consolation I couldn't do social groups etc for many many years and apparently used to be absolutely terrified if my mum wasn't where I expected her to be. But those were the days before anyone knew what it was or thought to do anything about it. Much more help and understanding now.

Def treat him as if he's ASD.

You really need to get him to the Comm paeds asap.

He may well have some sensory issues. He may go into overload and be doing the 'flight or fight' thing. This can make kids extremely strong and aggressive. Try to get a sensory OT to look at him.

Amberlight read some research that said ASD kids with sensory problems are more likely to be anxious. My DS is Mr Anxious (6 with ASD) despite having the most reassurance in the world!!

He may be fighting for a bit of control in his life - when you cannot control what you take it in terms of sights/sounds/physical feeling then this makes sense.

Please don't think you are sacrificing your life for his. You sound like a caring, thoughtful and loving mum. You are simply taking steps now to help him (and yourself!) in the future. It won't always be like this. It can improve.

We've all been there with the dark dark dark days of SN. We all understand.

you must not blame yourself, the proffessionals do that enough for us!
I have quit my job and chanced so much of my life for my girls over the last few years I forget what I used to do before they got here :) Its what you do for your children and very underdtandable to anyone who knows what your dealing with.

On a practical point with have a very strict routine and have for a long time but once that is settle you can make small changes.
Im glad you have a good school for him, it makes loads fo difference.
He is only 6 years old so you have time to get this sorted but you will have to push for everything, nothing comes easy when it comes to SN im afraid.

Take some time, think about 1 thing you want to change at a time, small things and work on those for now.

Where are you? There are alot of support groups around, maybe we can suggest one :)

Oh and welcome to the board.

Welcome to the board doris, come here and talk about any problems you have as many of us will have been through it already and have advice.

My dear son has only just been diagnosed with ASD and I don't know what I would have done without mumsnet.

You sound like a lovely caring mum who is doing the best for her son and will continue to do so, so well done.

You have definatly come to the right place, my Dd3 has been in the assessment process for around 18 months, we have recently been seen at camhs who reccomended that we should treat her as if she has a ASD even though we don't have a diagnosis.

Like your son she can become fixated by routines and is incredible clingy. I have a partner [her dad] but she will not accept him sometimes it just has to be me. I get one evening a week off to help run a Guide unit but apart from that I rarely go out.

It is very draining, kids like ours are really hard work, you are doing everything you can do, like the others say, don't beat yourself up.

If you are having a hard time come on here, theres always someone around with help, support or just to listen.

Good luck with your paed appointment, if they are being slow ring them and offer to take a cancellation at short notice, you might get seen quicker..

Thank you everyone.

Today has been better... have seen people and been out of the house and because we were at a big soft play place that he know he was fine. The shop first was a different matter but hey ho price you pay for wanting a shelf!

I'm in east midlands - there are some support groups but we dont have a disgnosis so it's difficult to just rock up to one.

My worry is that he seems to be on the cusp. One friend says a manage him almost too well and when he got very bad I threw in so much structure I helped him pull it together so that he coped with the change of school which on one hand is fab and on another seems to run the risk of them going 'There you go then - he's ok'

I just feel desperate because life is so difficult. We cant just go to the shop ever, it has to planned or negotiated. If we decided to just do something it inevitably will go wrong because he's not happy.

At the moment I cant see how I would ever have relationship, more children or even just further my career. I can live with the latter but no more kids and on my own forever . Professionals have agreed with me that indeed it would be a very bad idea and not to do that at the moment please

spinkles He's been seen by the comm paed twice - the first meeting got us no where and the second one 4 months later saw her sending me a Connors questionnaire and I took her the CAF that school had done. I have no faith in the comm paed at all apart from she has sent a behaviour specialist nurse out who wants me to try a behaviour technique based on CBT but there is a waiting list and that will be end of Jan and definately after CAF.

Has anyone had any experience of this technique?

Sorry I write a lot!

From what I have heard cbt does not work well if I child has Asd. We manage dds behaviour but I had a diary of all we do every day and the pead saw it wasn't this wasn't what we would do with an nt child. So don't panic that you are managing him well.

I think they are thinking CBT because of the ?attachement disorder ?linked to trauma

I'm glad she is insisting on coming to the CAF metting tho and ofcourse nothing will happen until after that (hopefully 14th Jan or following week)

I need to start a diary properly.

I have a partner and we still between us struggle so you are doing brilliantly. But you can't do it all without a break. Apply for Dla see cerebra website for good advice on how to complete form you don't need a dx just someone ( the head?) to confirm how much extra work is involved. You might then be able to get carers allowance as well. You can ask for a disabled children teams social worker to assess for respite - which can be in form of direct payments so perhaps you could ask for babysitter so you can get out. Look at local asd groups again you don't need to be certain its asd to go along. Access to social worker may open up options like holiday playschemes with trained staff etc. Contact a family website is good place to look or NAS. Just apply for everything you are entitled to. And meeting other parents in same boat can really help. People have mixed experiences of social workers but if they think you can't cope long term it's in their interests to help. A local family battled for years with 2 severe asd kids but it was only when mum cried and they thought they might end up having the kids in expensive residential care they put support in. Breaks to have a social life is not unreasonable.

Hi DayShiftDoris. Welcome to the board. CAMHS and / or community paed are most likely to make an accurate diagnosis if you give them the right information. And if you suspect asd, finding out more will ensure you don't forget to tell them about any signs. If he has nothing, or something else, it will become clearer over time; the key thing is to avoid being prematurely discharged from clinic.

Agree with lisad that standard cbt isn't necessarily what will work if he does have asd. That said, a behaviour specialist nurse may help as they should have loads of related experience, and have a host of other techniques (and probably know how to modify the cbt approaches to suit high functioning asd dc).

Most of us on here have been initially fobbed off with basic parenting advice. And almost everyone seems to have thought we were going mad, had caused all our children's problems, and were irretrievably bad parents. That includes posters working in education, health or social services.

I'm wondering if your ex-childminder might write a report or come to clinic with you. An experienced minder was completely unable to cope with your ds's behaviour during the summer non-routine, even just during the day. Two schools have had similar problems, and so have you, but mainly when you deviate from a strict routine. Surely that 'proves' it's not 'you'.

Yup, what Maria said. I have 5 1/2 years experience working with people with SN, mainly ASD, and an NVQ3 in the field. I have had teachers with no SN experience tell me I'm out and out wrong and know nothing, just because I was a TA and they were the teacher

YOU know your child best, please don't forget that

Just wanted to send waves of empathy your way Doris. You sound like you're doing a great job as a parent - the job of two as well. I have no support network locally, and know how trying to have any form of social life that doesn't involve a coffee shop during school hours is nigh on impossible. My DH works variable hours so even if i wanted a night off, it wouldn't be regular and it would have to be arranged last minute - so doesn't usually happen.
I don't know if you get used to it. Perhaps it's just another stage of parenthood? I do think it would be worth trying to organise a regular something, to give yourself some time to be you again and some very valuable head space to have your own thoughts.

auntevil

You've summed it up exactly how my social life is but although I dropped what little I had in Septemeber I had never really gone out regularly before - it's just that before I occasionally made it a reality though it always unsettled Scallypants, cost me money and barely seems worth it. Then when you see your friends drifting away because you wont even contemplate a night out ever, when you are told about nights out and then are pressured on the end that 'you have to come next time' and are told you'll end up a sad lonely spinster.... well yeah it's getting hard.

Though quite how the odd night out here and there is going to help I cant see! And the stress of the odd night here and there is just too much.

My biggest problem is actually a huge relief is that whatever is going on with Scallypants he is seems to sit on the cusp or is high functioning. He is attaining average levels at school and with a lot of management and effort is managable... have ummed and ahhed for years as it is.

I can see me going through all this for them to decide he doesn't need extra support at all. And regardless of that this is my life now - a life that no one understands or sees the need for me live like.

It's very scary

Doris, it sounds like they weren't terribly good friends if that's their attitude

Can you access some SN support groups in your area and make some real friends?

It's looking like I need to find a support group and soon... I've started to put feelers out.

Spoke to his head who is very supportive and it's a definate that the timetable worked... so it's looking like more structure will be key at CAF meeting - cue mad sort of

I seem to be very very lucky that I now have a supportive head teacher... though we don't as yet have an IEP or SA+ though to be fair the new understanding and CAF happened very quickly and to have written a IEP / SA+ at that point would have been counter-productive. I am under no illusions however and I will be looking at this to be completed very soon after the CAF and then I will be wanting a statement... I might be happy with the support we are getting and bit bruised around the edges but I am no pushover

Friends are getting there... some dont get it. One has been through a similar process and is out the other side with new partner and more children and hadn't considered how that might be different for me as she has supportive family and I don't.
Believe me I have cleared the deadwood from my friendship groups... these are people who are worth working on. I am not very good at being totally open and honest about my feelings so sometimes I think they are feeling about in the dark!

Am presuming you know there's a thread to substitute for going out on the lash / for a quiet curry with a few friends. So hopefully be seeing you on Friday night then!

Do your RL friends know that your lovely Scallypants probably has some problems beyond just being hard work? would they be more flexible if they did know? Cos if not, they may need to be relegated to the bottom of your second-best friends list (possibly excluding the soft play/SN mum).

I know you're worried 'they' will decide he doesn't need any extra support. Well they can't. You're his mum and you've decided that years ago, and you very effectively provided it. Print your posts and use them: you put things very well which makes assessments more effective. The usual worst case scenario isn't too bad: they might argue amongst themselves about what diagnostic category would accurately describe your dx's difficulties. That's ok, just keep bothering them till they get it right.

No professional could say that the amount of support you're already providing isn't well over the line into 'extra' territory already. And since it still isn't quite enough, they'd struggle to argue he doesn't need it.

sorry, cross posted. Glad some friends are worth the effort.

I know the support group I joined was / is v welcoming to any family with related problems, diagnosis or not.

mariamagdalena

Not aware of the thread - thats this??? Am I in for a good Friday evening?

You have really clarified my thoughts with what you have written. I am already doing so much 'stage management' of him that I don't know what is normal anymore other than my friends children are a doddle to care for

The friend's understand that he is having assessments but are in 2 camps: Trying to make me feel better by telling me it's probably nothing (without realising that I been through that one a long time ago!) and others who KNOW there is a problem but feel I should get on with my life regardless because they are worried that I cant sustain this for much longer but they are very worried about me going under with the stress and isolation.
I know they care about me and I know they deal with their own SN kids really well but I struggle to tell them how it is for me when I am not with Scallypants, how tight the handle I need to have on him to get through day to day, sometimes just me seeing that bedtime needs to be 7.15 instead of 7.45 can mean the difference between a good and bad day.

I have my flexi shift this weekend... it means a night at my dad as I will be at work at 6.30am. No wild parties for me but I do get to see a friend in hospital I hope who I haven't seen for a while thanks to bloody school hols! Scallypants doesn't cope well with me going so the weekend has already been planned with precision to get him back on track for Monday...

Oh did I mention that when he goes back to school he has a new teacher and a new classroom - the head is worried, I've not got over the holidays enough to worry about it!!

A lot of SN mums i know appear to deal with their own SN kids really well, but i bet that they have either been through similar feelings as you are going through now, or are going through them and just good at hiding their emotions.
A lot of us are like that analogy of a duck - calmly swimming on the surface - with our legs going ten to the dozen underneath just to keep afloat. Very few other parents have the same level of preparation and organisation and extra worries over seemingly trivial details. That's why support groups and these pages are invaluable at putting things back into perspective. They re-define 'normal'
Hope the new teacher and classroom haven't caused too many issues. let us know how he gets on. post another thread if there are problems as i know there will be many who have been through similar and can offer advice/suggestions and empathy.

Yeah the Friday night thread opens around 6ish. Come along and chat about nonsense!