How do you keep on going?

[Claw3]

Feel like i have the weight of the world on my shoulders today.

Step-dad was rushed to hospital and its not looking good.

Ds1 had an interview today for a college for A levels and didnt get a place, so frantically trying to find another college.

Dss came knocking on the door last night with a suitcase as his mum has punched him and thrown him out.

Ds3 ASD has a massive sore on his chest where he has been scratching himself in school today.

The dog has started to have violent fits and i have to take him to vet on Monday.

Dp is off of work with depression.

Im finding it hard to just keep going, i feel like crying.

How do you pull yourself together at times like these?

Give yourself a pat on the back for surviving long enough to post. Agree with lougle about papertrail and star about GP backing you up about time off. You can ask them to write to paeds/camhs re anti anxiety meds while you're there. No obligation to give them to ds but sends a very clear message that you, the OT and the dr all agree that he isn't coping.

And whatever you do, don't mention the new issues re your stepdad, dss, dog nor dp to the school as they're bound to use it as an excuse (old stuff is ok if they know already, you can give minimal info making it sound minor if you think ds will tell them himself).

Cream cake and baileys flying through Internet to you.

Thanks Mariagoretti, its nice to have a bit of support and understanding and baileys and cake of course

Oh God, we really sound like a dysfunction family, dont we, now ive blurted it all out like that!

Ds has been attended CAMHS for 1:1 therapy once a week since January, to help him deal with his anxieties. They do not agree with OT about him taking meds, but they have never seen him looking like how he did in the pictures.

I didnt notice the scratches on his chest, until i got home from CAMHS today, otherwise i could have shown them. They were not there this morning.

Oh yes i would never dare tell anyone, other than here, that i actually felt overwhelmed today!

Right thanks everyone, feeling much better now ive had a moan

Will go and do bedtime now and then set about getting some emails sent with pictures attached.

Claw

CAMHS always told us that if DS's condition deteriorated to contact them immediately and not wait until the next appointment.

A child who is doing this to themselves is in severe diistress and CAMHS should be aware. Sometimes you just have to be very assertive, demand to see them and tell them that you want some action - now.

Medication is not a route to take lightly and I must admit to having been quite averse but since DS was put on meds for OCD and anxiety he has improved vastly.

However the root of the problem is school. If you could get your GP to sign him off that would be a good step as it would him a breather from it. After all he can't be in a fit state to learn very much at the momment so you have to quaestion the benefit in him being there.

Mt DS tried to hang on in school unsupported for too long and its left him with longterm mental health issues. I think you need to take him out before it does lasting damage to him.

You're doing a great job in prioritising, by the way. That's how I deal with the avalanches that occur from time to time.

Best wishes

Claw sorry to hear about the stressful time you're having. Can't add much except to say that tomorrow is another day and will hopefully be better. Know how you feel as ds has had a really stressful time since he went back. Someone asked me something about him at work the other day and I broke down and had to be sent home. It helped talking to my boss though so she knew all the crap I was having to deal with as well as busy job. I feel a lot better now and hope you do soon too!

Star, that is exactly what i did say. CAMHS agreed with me. But CAMHS pussy foot around schools.

Wet- thanks, i have emailed CAMHS attaching pictures and info about incidents. Told them i feel that ds is in distress and not coping. I have asked LA for emergency Statement and hope that they back my request. Also emailed LA. Now all i need to do is write a letter to the school and hope that they back my request. I worry about that, teachers and SENCO dont seem to communicate. Ds couldnt see to read all day, but teacher never thought to mention this to SENCO.

Will get an appointment for my GP too, she is useless and comes out with bollox such as are you sure he doesnt suffer with eczema and dont worry he will eat once he sees the other children eat in school. But she will write whatever i tell her to write for a pound note. Greedy cow. New GP is needed too.

Fighting, thanks. So true. I will get up early tomorrow and write to the school. Im trying to think of a nice way of putting it, so they dont get defensive. I rarely cry, perhaps that is what is needed, a good old sob with snotty nose and everything Glad you are feeling better.

Silver, so sorry i missed your post, trying to do 10 things at once!

That is really kind of you and i will let you know if i need help. Thanks im really chuffed

Would really appreciate some help with this letter to SENCO, this is what i basically need to say, only shorter and better! My brain is a whirl.

I am attaching pictures of injuries that ds has caused to himself recently, which is causing me some concern.

He came out of school today with a sore on his chest. He has been scratching his chest, causing injury. It was not there this morning when he came to school.

There was an incident in the playground today reported to me by Miss x, where ds had been violent to a girl and she had reported it to a teacher, apparently ds did a 'Chinese burn' on her arm (ds says the girl was head butting him, whether she was or whether ds has misinterpreted her intentions or perhaps an accident, i dont know). When he was questioned about the incident, he run away and hid in a "dangerous place" (not sure where) and they would not have found him, had it not been for the Miss X seeing where he hid. When they got him out from his hiding place he then broke some school equipment.

Both August pictures were taken just after he broke up from school for the summer holidays. He scratched at his hand until it was sore and rubbed at his eye constantly until it closed up.

July picture before he broke up for the 6 weeks, injury to his stomach caused by scratching.

Prior to the Summer holidays there were also 3 incidents of ds being aggressive to other children and ds received a written warning.

There have also been a few other incidents since ds returned to school this term. Ds was claiming his eyes were hurting and rubbing at them and that he was unable to read anything for the whole day in school and ds says Mrs X told him to mention to me about getting his eyes checked. Ds 'forgetting' to bring any reading books home. Ds is barely eating at lunchtime and Miss X reported that ds was shaking when she tried to encourage him to eat. Ds also coming home very distressed that he was going to jail and that the children were trying to put him in the shed and he had been thrown on the floor grazing his head (sounds like it may have been a pretend game that was a bit rough, that the children were playing, that he has misinterpreted)

I feel ds is confused and getting distressed to cause himself injury.

I have asked the Local Authority to consider ds?s statement as a matter of urgency and was hoping that you would back my request.

This is no reflection on the school. I just wanted you to be aware of the incidents and my request.

That reads so true and is so polite I would (almost) leave it well alone. I don't think it needs to be shorter or more professonal. It reads as 'my son has massive problems, they're coming from the school situation and this is why, current approaches aren't helping, i'm grateful for your help and I've only gone over your heads because it's an emergency. Please help us out.'

Which I'm assuming is the message you wanted to send. I'm going to try & remember to copy your adult approach first if I'm tempted to go nuclear at school... I think I have childish fear & an internal bad attitude when it comes to dealing with teachers (do hide it but it's fairly disempowering).

However, much easier when it's someone elses dc... Just add to 'no reflection on the school'..... 'as I know you can't give him huge amounts of one to one without getting the LA's backing' to reinforce what you want

So sorry to hear you've got all this going on, Claw. The letter is brilliant (though alarm instead of some concern is good).

Maria, you are right, its a 'that will do' letter, added the line you suggested, printed and ready to go. Emailed CAMHS and LA last night. Job done and one i tick off of my to do list.

Im sure SENCO isnt aware of half of it, teachers, TA's etc dont seem to communicate. This year ds has 2 teachers who job share, which isnt improving communication.

Thank you :)

Thanks Cory, feeling much better this morning, was just having a 'woe is me' moment. Business as usual today!

Have printed letter already, im resorting to 'that will do'. Im normally a bit of perfectionist and could spend hours writing a letter and weeks/months on parental contributions etc. Done and sent is good enough for today at least.

Just dropped ds at school, handed in letter for SENCO and thought i would have a word with TA as the children lined up.

Me: Ds has a bad sore on his chest where he has been scratching.

TA: Does he have Eczema.

Me: No he gets anxious (surprised that TA knows nothing about him)

TA: Does he have OCD or something.

Me: No, he has autism.

TA: Have you asked him what he is anxious about.

Me: He doesnt know that he is anxious, but im assuming it may have something to do with yesterday in the playground, when he gave a girl a chinese burn. He says that he head butted him, but he often misinterprets peoples intentions.

TA: Yeah kids like to bend the truth sometimes dont that.

Me: He is not bending the truth, he misinterprets. Anyhow he ran away an hid and then broke some equipment, so he was obviously feeling overwhelmed.

TA: I will keep an eye on him.

I despair, i really do.

Just off for an interview at college with ds1, fingers crossed.

hope all goes well at college with ds1, claw.

good letter -well done. gets it all on record.

are you up to writing to confirm your worries that TA didn't know your ds had asd? and about the misinterpretaion/bending the truth bit? just more stuff to get on record, really - should all help your SA, though.

how is that going? any more news on the ed psych visit?

Thanks silver, just got back, Yay ds has a place at college, starts Monday :) such a relief.

Thank you so much for your offer, very appreciated. Im taking one step at a time and things seem to be getting sorted. I think i just flap when too many things happen as once, i like everything sorted there and then. I have to do today, i cant put off to tomorrow.

I keep a diary off all conversations, incidents etc. I dont want to complain too much about the school just yet, as they have been trying hard. Year one TA and teacher were amazing, year two seems to have taken a nose dive.

GP appointment at 3.55.

EP went into school to assess ds on 6th, so no reason why LA cant decide now. Will check my emails.

The LEA will be waiting for the EPs report which can take 2/3 weeks or more to come through.

Wassup, they have given me a date of 5th October for the decision. Ep works for them, probably in the same the building. I dont see why a child causing himself injury cant be dealt with as a emergency. No one seems to think its a big deal expect for me and people on here.

CAMHS, oh its his way of coping. School, oh we will keep on eye on him. I feel like screaming, just give him some bloody help!

Keep on going Claw. Think of the battle you had with the last school - you did it in the end. This is just another thing to overcome. You will get there - it just takes so bloody long. All these professionals should try putting themselves in our shoes. DH had a bit of a rant in frustration at new Senco recently and she was 'very upset' apparently. No - upset is having your child saying they want to be dead rather than go to school. She'll have to toughen up a bit if she's dealing with SN parents. I am now getting to the stage where I'm going to get very demanding and be a pain in their backsides but you have to do what you can to help your ds don't you?
Hope you have a good weekend.

Fighting, You are right, if you have a problem, you have to sort it, it is the only choice.

Thanks hope you have a good one too

Claw.. I don't know if this will be of any help to you.

I in no doubt asked CAMHS for help when school issues that weren't being dealt with by the school, were effecting not only ds's mental health.. But the by product was putting himself and others at risk of harm.. And had also caused actual harm.
What his camhs coordinater did.. Was to give us a tier 3 behavioural therapist specializing in asc.

She has managed to strip just about everything down to basics.. She has gone into a meeting with me at school, because school we not putting in the support he needed.. ( it's funny how in that meeting the one thing I was told ds could not have, was produced like it was the SENcos bloody idea.. In front of the BT)... We also got the other things we needed... Just by her sitting in the meeting!

Without her.. We would have been fobbed off again, as we were during our phone calls. .. They tried the ' your son is lying' ( without actually saying it) tack.. Which the BT resolved for us.
It seems to make a massive difference on the reaction of the school between a parent saying exactly the samething as a BT.. Which is awful! It's a waste of resources, time and someone else could have had that BTs time.. It makes me so angry.

Anyway our upshot is.. The way that school deal with ds and his issues..has a dramatic effect upon his mental health.. No matter what stratagies and tools we use on a constant basis at home.. It is not good enough that in our case a SENco came across with NO knowledge. About ASC...
One minute he was saying he and staff saw ds having no problems... In the next sentence he was talking about issues without even knowing that he was seeing classic ASC behaviour.
.. I enjoed pointing out to him that he was actually seeing issues.. But not recognising him.. And explained a little knowledge is not only free.. But a valuable resource!

anyway though that ramble.. I just want you to be aware that.. You can ask for a behavioural therapist from camhs .. Based on him harming himself..
And camhs deffinatley can and do go into schools to support parents trying get schools to impliment simple stratagies that will stop this risky harming behaviour!

Thearsenic, thank you. Ds has 1:1 weekly therapy at CAMHS. CAMHS will be involved in all meetings with the school (he started at this new school about 2-3 weeks before the summer hols.

Ds's new school are trying really hard and recognise that he is a very anxious boy.

His IEP targets areas such as anxiety, eating, fine and gross motor skills and social skills. It actually says "areas to be developed" and lists all his difficulties which are not significantly dealt with in his IEP and states "these should come from statement objectives". Obviously IEP help received is vague and includes things such as TA supporting ds, social skills group 2 x week, Jump Ahead 3 x week, support for PE, support for handwriting etc, etc. His IEP is very good, as far as IEP's go.

The school are saying they cannot met all his needs without a statement. His needs are not being met, hence the self injuries. The LA need to get a bloody move on with his statement. I have asked for specialised TA support etc, etc.

Ds told me today that his 'willy' was hurting, when i got him to show me, he has similar injuries around his penis.