Help! I don't know what to do anymore!

[Mother in Need]

My 12 year old AS son has just spend 6 weeks at a a specialist psychiatric day unit for assesment and therapy, the idea was that they would help him reintegrate back at school as he totally refused to go as school was not meeting his needs.

This 'reintegration' did not come to much unfortunately, though promises of improvements were made. Well these were obviously forgotten again during the holidays, as they have not been put into place.

My son fully refused to go to school this morning, which is a very normal scene here (and scene is definitely the right word). So I spoke to the deputy head in charge of SENCO on the phone, who basically just said that they have done everything they could all along, that my son should take more responsibilty (to which I pointed out yet again that he has an emotional age of between 3 and 7 only), that once he is at school he can manage perfectly (yeah right, that is why is so school phobic), that he is defintely not going to have 1:2:1 support (even though this was recommended by the specialists) and that 'unfortunately that's all there is.'

 

School itself slowed down the assessment process by nearly a year, till I had enough of it all and employed a solicitor to by-pass the school and request the assessment direct. We are now on Stage Two of this process, but I have been told that it will take till Easter before he'll have his statement (IF he'll get one).

 

I estimate that his attendance rates for the last term was below 20%, and the way we are going now, it is going to be nill. He is not receiving any education this way, and I am stuck with him. I have lost my business by now as I can never ever work, and I am not looking forward to having him 24 hours a day, 7 days a week, and on and on, without EVER having a break from him. Can't even close the door to the loo and hide in there for five minutes...

 

Can school be held responsible for not meeting his educational and emotional needs by not creating a safe enough space and personal TAs and hence he has become school phobic? Or will they just say that they have done more than is their duty as this child is not statemented yet and therefore he should be happy with whatever he is given, even if it is not enough?

 

What can I do/should I do between now and The Statement?

Edited January 9, 2006 by Mother in Need

[oracle]

Do you think that having a Statement is going to make any difference to the situation that you are in now with your son? I am not being flippant or dismissive but having been in your situation - and believe me I can quite clearly see what you mean when you say (and scene is definitely the right word) because I have been there done that and eventually had the smashed up furniture to prove it. I am asking because once it has got to the stage where a Mum is physically unable to force her child to school then I do not think a Statement will make a jot of difference unless perhaps that will also mean a change of school. When trust breaks down - and we sometimes forget that children need to trust these people to - then it is almost impossible to regain the trust of the child. We never got David back to school and I do not say that to worry you. School have dragged their heals until the balance of power has left their grasp and is now in the hands of your son.

 

The difference between us is that I realised that my son would never go back willingly after he had a full breakdown and I gave up trying.

 

You ask

Can school be held responsible for not meeting his educational and emotional needs by not creating a safe enough space and personal TAs and hence he has become school phobic?

 

I do not know the answer to this but I do however have contact numbers for a group of solicitors who may well be able to answer your question. First contact is free. If you would like these numbers please pm me and I will pass them on to you.

 

Unless parents try and make schools accountable for their total lack of support an understanding nothing will ever change. It would be good to see if you can hold them accountable here?

 

Good Luck

 

Carole

[UltraMum]

No advice but <'> <'> <'> - have you got IPSEA involved?

[nvapid]

have they absolutely refused 1:1? Is there another child in his class (registration/first period) who has a TA/LSA?

If you are in the second part of the assessment process - then it is extremely likely you will get some sort of statement. On that basis, write to the HT, copying the LEA, and ask if you could have a TA/LSA help you over that first 20min hump by meeting you at the gates and escourting your son in and staying with/accessable him until he goes to his first class?

 

Be helpful, offer solutions you are happy with. If they refuse, they look bad and uncooperative and you can then officially list all the times they have been so to the governing board, LEA and Director of Education.

[Guest hallyscomet]

hi,

 

A lot of us can empathise with you, on how the system can let us down. I know some have had better success in going to a Paediatrician. At age twelve has your child been prescribed any medication for his condition. It truly sounds like your child is going through a very typical scenario a lot of us parents have gone through, once our children reach the age of twelve. Once our children reach puberty, everything we used to do in the past stops working, and usually find that some of the medications need to be changed. On the medication Board of this forum there has been a lot of talk on how Risperdal has changed their childs lives and got them back to school. Have a look here you will find a lot in common.

 

Hopefully the Paediatrician will fast track the process for you. Most I am sure would agree with me.

 

All the best

 

Regards

Hailey

[Hectorshouse]

MIN I don't have much to add at the mo, am shattered from meeting, but you are in my thoughts ..

 

Saying that, I do agree with Carole here in a way, a statement still isn't going to get your son out the door to school, but ... and it is a big but ... he is still entitled to an education and the LEA do have a responsibility for this which so does the school, when I get my awake head on I might have some clearer ideas.

 

I do totally agree with Carole that schools should be made accountable for their lack of support and understanding, they really don't like us awkward parents, but if they were doing their job we wouldn't be the awkward parents we have had to become. Keep the pressure on, we are behind you.

 

HHxx

[Mother in Need]

My son is already on respiridone, and I slightly increased the dose before Christmas. When I brought the dose back to his normal 1 mg a day afterwards, his behaviour instantly deteriorated so I put him back on the 1 1/2 mg. This is without the doctors knowing, as they are near impossible to contact and once contacted I would still have to wait a month or two for an appointment so I have just gone ahead with it.

Fast tracking barely happened when he threatened his brother with a knife twice, so it certainly won't happen for so small a matter.

 

As for the statement, yes I am hopeful it will make a difference because IF it says he needs 1-2-1, then school cannot refuse to do so. But if it doesn't...........

 

He needs more LSA help than the first 20 minutes, he is soooooo immature emotionally that he needs help all throughout the day. School just CANNOT see this, because he is so incredibly bright they can simply not see his emotional age/state. And as he can't either... They feel he needs to 'take responsibilty' and 'tell them when something is wrong and what'. Yeah right, he is not capable at all of doing this, but they cannot see past his adult use of language etc and feels he is a good communicator

 

I have got a solicitor involved already, and will talk to him about this, but am not sure how things stand financially with the loss of my business, so simply cannot build up large (or small) solicitor's bills.

 

I realise that the simplest solution is to home educate; I have done this in the past for 6 years, hence I know enough that this won't work now, he is too oppositional for me to get him to learn anything, and also, I need that break from him. I love him dearly, but 24/7 without ANY break ever, is not what I can cope with anymore.

[Suze]

At any point during your sons assessments at the physchiatric unit did anyone mention a specialist provision for your son.If they did this would be good evidence if you wanted to request a more specialist provision for him. Reading what you have said about his current school it does,nt seem like the best place for him even if he does get fulltime 1-1.Best of luck Suzex.

[Mother in Need]

Thanks Suze, no unfortunately they did not. They felt that because he is so very bright, he should be able to manage at school with 1-2-1. I am beginning to seriously doubt this though...

 

The good news is that I managed to get him to school today, and I think they got my message somewhat that they really had to do a lot more, because he says he's had a good day and even his English teacher tried not to shout (he seriously dislikes teachers shouting) which he usually seems to do most of the time (well, no, that's my son's impression!). I've had a day off, went on here, had a bath and slept all the rest; I needed that! Tomorrow morning will say more about how his day really was, as all comes out when he has to go back there. But even if he goes, most days is a fight in the mornings and I'm tired of it, and so are his brothers.

[Guest hallyscomet]

<'> <'> <'> <'> <'>

 

Our prayers are with you that things get better real soon. You deserve it, What meds does your child take mine takes Risperdal and Concerta and anxiety tabs called Luvox he is on the severe scale, he is a different person on these meds he used to be like your son. He thanked me when I put him on different meds, as he said he couldn't integrate without them, talking to peers was virtually impossible, he just couldn't get his head mind around it. Combination of Concerta & Risperdal gave him the mental energy to have a conversation. I had tears in my eyes when he was 5 because of how medication gave him the ability to talk again.

 

At the age of twelve everything went off the rails again, this is common, my son was old enough when he reached puberty to tell me how the change of medication changed him again, once he was on the right meds and dose, that is, read on to see how hard it was for him.

It was such a struggle I later found out as his brain wouldn't process words, so he would get so frustrated he would resort to violence, he punched one kid in the face for teasing him. Meltdowns galore. Poor guy once he was able to tell me how it was, and it wasn't until he was on the right meds was he able to sit down and tell me, I love him so much, and felt so bad for him. Literally, my daughter and I were scared... I remember so clearly my son became very violent and aggressive a real short fuse, I remember feeling sick to the stomach, thinking his medications are not working, what am I going to do now. When I rang his Paediatrician and told him spoke with him directly on the phone, he made time to see me and my son that day, he said if ever I had a problem with behaviour change to call him immediately and he will see him asap, well, truly I was relieved as because I feared that if something seriously didn't happen soon I feared I would lose my beautiful boy to an institution or I would end up in one and my daughter. We ended up doing a school change as the school he was at just put him in the too hard basket, we ewre paying $4,000 a year and they were ###### wouldn't take any responsiblity in giving his medication. I remember it was really hard going. Once we change to the Public system he again thanked me as the Librarian took full responsiblity for his medication and if he didnt come to get it she would ring the class room he was in as she had a copy of this timetable. My boy said the children were much nicer and more understanding.

 

I read your story and Clarkie's and I can tell you I know exactly what it is like to walk in your shoes. I say to both of you, if you don't feel you are getting the right answers go to the top in search of a Paediatrician that specialises in children like ours. My sons Paediatrician is worth his weight in gold, he really cares. He is my sons rock, especially when my son's future has clouded over all black he always makes the sun shine for us and my boy.

 

My prayers are with you that you and Clarkie get the help you deserve.

 

 

 

Love Hailey <'> <'> <'>

Edited January 11, 2006 by hallyscomet