Help - What is wrong with my child & what can I do - sure he will be excluded or dead soon...

[oliandjoesmum]

I haven't posetd on here for a couple of years now, but if you are interested in the background I guess you can search on my nickname. I am not sure how to do links??
Anyway, my eldest DS is now 8. His behaviour is so extreme, I have no idea how to cope any more. He was recently moved to a larger school for year 3 because we thought he would manage better there, and his brother (4 - in reception) wanted to go there. His violent outbursts got worse and worse (hitting/ biting/ trying to stab a child with a pencil), and his depression and self harming attempts (biting himself/ hitting himself with heavy objects/ scratching/ pulling hair out) also escalated. I eventually had to take him out the day I found him running around the school screaming his head off and unable to even recognise me (no teacher with him). I think he found the size/ sensory overload/ social demands of the school too much.
He is now at another smaller school (the school he had left) part time, but he is so withdrawn and suicidal. He can't look at people, he puts his coat over his head when walking in to school. He can only manage two hours a day, and certainly no lunchtimes.He has violent outbursts at home, kicking and throwing, and he hides under tables/ beds etc. I also have a 4yo and 1 yo to care for, and a part time job.
The other parents are being horrendous, the gossip is atrocious. My son is undergoing an ASD diagnosis, he quite clearly is mentally disturbed, and he can't help his actions. However people are saying I don't care, that I am cold and rude (I am actually acutely depressed, and unable to cope with the playground anymore). They have also started chinese whispers that my 4yo is 'naughty'(he isn't, right perfect peter) to paint me further as a bad mother.
I am in constant conversations with educational psychologist, CAMHS, CASADT, consultant, head teacher etc etc, what more can I do?? Nothing ever actually seems to happen, mental health process seems to be a complete nightmare.
Have applied for IPF, really hoping this might help, but really, I don't know what to do. Is this ASD/ conduct disorder/ ADHD?? I just don't know. I am at breaking point and having panic attacks frequently about him being excluded/ taken in to care. The other mothers have no idea, they say 'we/him are not punished enough' for his behavoiur, they have no idea of the hell. I need some help, but I don't know where else to turn....

You poor thing. Is a diagnosis close?

God you poor thing. How long is the diagnosis supposed to be taking? What support is the school offering? Contact the National Autistic Society and Parent Partnership (google it) and get some support for yourself. He is ENTITLED to an education and you need to kick up a fuss with the LEA (sorry, but the amount or arse-kicking you need to do when you have a kid with SN is unbelievable).

I can't help but wanted to send you hugs. Is your eldest happier at home, would it be possible to keep him at home for the time being until you get the diagnosis?

Oh you poor thing

You say he is seeing a consultant,and awaiting a dx?When do you next see them?Can you get an emergency appt?What about the Ed Psych/SENCO type people??

I am a bit unsure what to say,really.You sound understandably at your wits end.I hope someone comes along with more knowledge.

Hugs Wrinkly.

(Have you posted in SN??There maybe someone on there with better advice than I0

Devoutsceptic is right - is his needs are not being met it is not your fault - it is the fault of the school/LEA. Have you got the number of the parent partnership officer?

School sounds very frightening for him.
The gossip must be upsetting and isolating for you all.
Is home schooling an option?

I think it will do you good to post in sn and you will not feel so isolated. You don't know yet but there is obviously something.
Don't be hard on yourself. Take things in small chunks. Things will gradually improve, look after yourself in all this, you have so much on your plate. Are you seeing the dr about your depression?
Don't worry about what people think, stuff 'em. You might be surprised to find that many are understanding but if you are depressed it is difficult to think straight about things.

Keep posting on mn you will get loads of support from people who know what it's like and will have practical advice for you.

By the way your son sounds similar to my nephew, he is still waiting for a diagnosis, it was suspected adhd but more likely aspergers but they are still guessing.
My neice was diagnosed with aspergers and once you know better what you are dealing with things do fall into place and settle down I think.
I hope you get a diagnosis soon.

oliandjoesmum,
please please ignore the other parents. The school should have not allowed this situation to have escalated. It is not your fault. If going to school is upsetting your son, and you, so much, I would be inclined to keep him off school and invest my energies in kicking up a fuss, as others have suggested. The local authority should be carrying out a statutory assessment so, if that's not already in hand, you could ask them to start. You can request the assessment on health grounds as well as likely ASD/ADHD.
I would ask your paediatrician for an urgent referral for a multi-disciplinary neurodevelopmental and psychiatric assessment. The benefit of going to a specialist service like this is that all the assessment can be done on the same day and you should get one set of reports summing up the diagnosis, treatment etc. If your son needs medication or psychological therapy, that can also be started strsight away. Your son sounds complex and if the local services have taken this long to get their act together, there's a good chance any help finally offered will be inadequate/inappropriate.
You could also contact SOS!SEN for advice. They offer an excellent service supporting parents in exactly your situation.
Basically, all I'm trying to say is I hope you're okay and things start to happen for the better.

sorry you and your DS are having such a horrible time. if you've not already done so, get in touch with your nearest ASD support group, as they may be some help in helping you through the local system.

Oh, this is awful for you all. that your son is clearly so unhappy and the knock on effect it is having on the rest of the family.

Is there a Parent Partnership liaison person for your borough/area?

Sounds like a little lad at our pre-school earlier this year. He was all over the place and would hit and kick people if they told him not to do something and he would physically fight you.
The special needs co-ordinator was at the pre-school one day seing another child and she said she had never seen such a wild and violent 3yr old.
We had a meeting with the mother and the SN people but the mum would have none of it and said that ALL boys are violent like that, its part of being a boy!
She was seriously deluded. Just hope the little boy gets diagnosed quickly.
At least the OP is trying her best to get something done. But yes, mental health services are rubbish in this country all accross the board

it may seem a bit mad (but guessing your desperate) try a mctimony chiropractor. children can be so in pain (physically) that it can literally send them mad. my chiro told me about cases where autistic children (my younger brother is autistic) who recieved treatment had complete turn arounds and no more autistic behavier. honestly its worth a look. also my brother improved on omega 3 milkshakes. i hope this helps at all, as really cant imagine what it must be like for you

wow, thanks for all the support. Can't believe how many responses so quickly. It just feels better to offload and not feel so alone. I have tried avoiding the playground, I have to be at the other school for DS2 so that isn't difficult. Backfired a bit though because now I am apparently 'ashamed and avoiding' mothers. Have had another awful evening, he was really hitting and kicking me. He went really hyper and was just runnig backwards and forwards across the room banging in to the walls. I desperately love him but I do fear for my other children who are so sweet. What if he hurts them? What happens then?? He keeps on saying he is a 'waste of space' and a 'dickhead'.
He doesn't have a statement, our case is going before the funding board (I think called??) tomorrow for IPF (individual pupil funding) so that he can have 1:1. I also think this is the only way he can stay in mainstream education. It is so heartbreaking because he is super super clever, reading age in teens, he really can be amazing.
I am also going to fight at the doctors tomorrow for some help, this is all reaching crisis point.

Wow. Empathy coming your way. The stress you're under is clearly overwhelming. I would seriously consider printing out these pages and handing them directly to the parents who have so little feeling, they should be thoroughly ashamed of themselves. There will be safety in numbers - the cowards - give them something to read, and educate them. If you reach just one of them it will help your child and mine (12 yr old high funct autism) and others in the future. The only thing I'd add is that I'd maybe question mainstream. I thought it was the right place for so long but now my son has started at a special school, he is just so much happier, he actually feels for the first time like he belongs there. He's bright too, but mental health is the most important thing of all I think.

yes there must be ways of making your son's educational environment less overwhelming for him. either the school he is in should be creating a workstation and quiet area that minimises the overload that he is currently experiencing, or there should be an alternative placement in a school that can meet his needs. ask for what's available in your area and make some visits to see if there is a special school/unit that could meet your ds's needs.

it must be heartbreaking for you when he puts himself down like that. you sound as though you are having such a difficult time. it's so hard if you feel that matters are out of your control. are there any triggers that you can identify that make his difficulties worse? like diet, noisy environments, transitions between activities, etc, etc. write down as much information as you can when you go to visit the doctor. it's so easy to forget things when you get an appointment and you are feeling emotional. hopefully the gp can refer you on to a developmental paediatrician.

good luck with this.

I'm going to give you a big

Why hasn't he got a statement yet - has the school gone for Statutory Assessment. With just the little info given, it does sound like he could be high-achieving ASD or Aspergers.

Definitly push the LEA for assessment. I am awaiting this prior to statementing for my DS at the moment.

My sister who works as a teaching assistant and has also done SENCO training has told me to keep phoning and hassling as that's the only way anything gets done - not right but just how the system is.

Ignore these other ignorant mothers in the playground - they want to try coping with what you have to and then see if they feel 100%. Say a cheery "hello" and then ignore them. Is there anyone there you know well enough to talk to and can drop a hint to for more accurate discussion among the parents?

Keep your head up - you've done nothing wrong - just trying to achieve the best for your child.

We saw GP yesterday. She was furious/horrified that nobody is doing anything to help him or us. She rang CAMHS and demanded as a priority that he gets some help. Waiting to here back from her. CASADT (autism support team) have written a quite useful report including some good strategies, have said also to do a story with the other children for them to understand why Joseph finds some things (personal space being invaded/ eye contact/ change) difficult. They also need to explain why he just says whatever is in his head, doesn't know how to regulate thoughts. Will also explain why he reacts by running/ throwing chairs/ hitting out. I understand that 7/8 year old children are scared, it is the parents I don't understand, one of them is actually doing a masters in psychology, and she is one of the ringleaders!! The IPF may be the stepping stone we need whilst awaiting dx.

great to hear you are beginning to get the support that you need. good luck.

Sounds like things are making progress at last. Well done, keep your strength up and hope it all gets easier from here on in.

Nothing to add but thought I wanted to send you a big hug xx
Ignore those people who are not being sympathetic you are clearly a great mum doing all possible to get help for your child.

He sounds just like my eleven year old son. He has a diagnosis of Aspergers and after four years got a statement. He is suicidal, rude, abusive and on the boarderline for being excluded from his new secondary school. I can't leave him alone with his siblings and he frequently has everyone in tears. He never sleeps and is a toilet refuser. He has attacked me on more than one occasion and I am scared for him. His siblings ALL suffer because of his condition.
He also has a diagnosis of co morbid adhd.

Just trying to show you that you are not alone.

If you do a search on my name you will find our story.

I was at my wits' end and finally decided to deregister my son, then just turned 10 years old.

He had been to CAMHS 6 months earlier for some sessions. These did help us because the workers showed open, clear discussion of our situation.

The home ed option was not part of GP/CAMHS/my relatives/husband's agenda. I was on my own on that one.

My son showed distressed behaviour for months following the deregistration, though not the pulling plastic bags over his head.

He wanted to go back to school, did so, it didn't work during the 2 weeks he was there. He showed more difficult and threatening behaviour over the months following that deregistration. We have just had a peaceful Christmas though and he has definitely settled down again. I'm amazed at the time it takes to get stuff/bad experiences out of his system.

We only had the diagnosis of High Functioning Autism in late September, after I had taken him out again. I had the post diagnosis ups and downs for a while after that. It has explained a lot though.

Sometimes I thought it was my bad parenting causing all this, but seeing him chatting and calm with his brother and with his uncle makes me realise he is happy when he is with people who love him. This time last year was a terrible place for us, but now is soo much better.

The emotional and physical pain you are all going through is off the scale. Hugs.