advise please

[luvsghouls]

Hi
I hope i'm posting this in the right place. My ds2 has been under the hospital for problems with his behaviour i had started to notice when he was 18mnths he wasn't like any of the other children and in all of his delvelopment checks he was always behind never reaching his milestones i asked for help then as he became very difficult to handle lashing out and havin tantrums over the slightest thing and i was told he was just copying his older brother from when he had gone through the terrible 2's (theres 17months between them) i carried on doing my best and trying different parenting courses. Anyway we finally got someone to listen and the gp refered him to the hospitals child development centre. We went through the assessments and was told the couldn't diagnose him properly yet but they suspected he was low end of the autistic spectrum and had adhd. We were told before they would diagnose properly we had to take him to speach theropy and behaviour theropy as they thought there was a chance these could be the cause. We have taken him to all the speach theropy and on our 1st session of behaviour theropy we were told his behaviour was too extreme for them to handle as he has violent tendancies (sp) so we were refered to IAPS after 1st referal we were told the SNHV couldnt send it so the school nurse sent one instead we went throu the form together and she put all his worst behaviours down and sent it off. I was informed today that they dont think they can deal with him as his behaviour is not extreme enough! Even though he cant be left alone with the younger 2dc or our cat as he has attacked them all on a number of occassions. I'm so frustrated and upset at the moment as i have been told i now have to go back to the gp and get another referal to the child delvelopment team i really dont know what to do anymore as i have done everything they have asked and i'm still left with no help for him has anyone else had this and if so what did they do to get the help?
I've just looked back and ds2 sounds so horrible but he really isn't he can be so gentle and loving but no matter what we do he just never listens and when he goes off on one everyone is at risk even himself

Just seen your post. Im going to have a think on this overnight, but I will post again tomorrow. Didnt want your post to go unanswered tonight.
Err, rather a lot of "posts" there, must be the late hour!

luvs

Hiya, I read some of your post, but I have some reading issues and can't stay on the right line etc when it is all text like that.

Is it possible to break up the text into 3 or 4 lines or paragraphs please. Then I might stand a chance.

How old is your DS2 now? What is/are IAPS? Who did the behaviour therapy?

Sorry for all the q's just trying to work out where you are in the system.

Hi polareyes ds2 is 5 now he will be 6 in dec
as far as i know IAPS offer theropy to children with extreme behaviour problems he hasn't had any behaviour theropy at the moment we had an intial assessment when we went to the child development centre then afterwards we had a meeting with the HV for children with disablities and complex needs it was then she told us she wouldnt beable to help as he was too extreme for her to be able to deal with.

Hi
I hope i'm posting this in the right place. My ds2 has been under the hospital for problems with his behaviour i had started to notice when he was 18mnths he wasn't like any of the other children and in all of his delvelopment checks he was always behind never reaching his milestones i asked for help then as he became very difficult to handle lashing out and havin tantrums over the slightest thing and i was told he was just copying his older brother from when he had gone through the terrible 2's (theres 17months between them) i carried on doing my best and trying different parenting courses.

Anyway we finally got someone to listen and the gp refered him to the hospitals child development centre. We went through the assessments and was told the couldn't diagnose him properly yet but they suspected he was low end of the autistic spectrum and had adhd. We were told before they would diagnose properly we had to take him to speach theropy and behaviour theropy as they thought there was a chance these could be the cause.

We have taken him to all the speach theropy and on our 1st session of behaviour theropy we were told his behaviour was too extreme for them to handle as he has violent tendancies (sp) so we were refered to IAPS after 1st referal we were told the SNHV couldnt send it so the school nurse sent one instead we went through the form together and she put all his worst behaviours down and sent it off.

I was informed today that they dont think they can deal with him as his behaviour is not extreme enough! Even though he cant be left alone with the younger 2dc or our cat as he has attacked them all on a number of occassions. I'm so frustrated and upset at the moment as i have been told i now have to go back to the gp and get another referal to the child delvelopment team i really dont know what to do anymore as i have done everything they have asked and i'm still left with no help for him has anyone else had this and if so what did they do to get the help?

I've just looked back and ds2 sounds so horrible but he really isn't he can be so gentle and loving but no matter what we do he just never listens and when he goes off on one everyone is at risk even himself

I think you need to start writing letters of complaints.

so first off I would find out who is in charge of the IAPS team, and write querying why your DS2 is deemed not severe enough. Keep a diary of his behaviour and attach that to demonstrate. Does he get any support at school or display challenging behaviour there? if so ask the school to do a letter to, to strenthen your case. also the person who said his behaviour was too severe for them to deal with, did they give you a report/letter to that effect? if so include it, if not ask them to do one.

I would go back to the GP and ask for an urgent referral back to the CDC.

Do you get DLA for DS2? if not it may be worth applying as it would enable you to buy in some extra help/equipment etc. ALso if you have any DC under 5 and live in an area that has homestart you can refer and ask for help, they can play with your younger DC whilst you manage your ds2 etc. it would likely be 2hours a week. www.home-start.org.uk/homepage

May also be worth getting in touch with your nearest Sure star centre, as some have family support workers who will probably know what local services are available and give you some support.

Hi Polareyes

Thanks for the reply I have rung the doctors luckly enough its a big medical centre and they are open weekends I have to take him tomorrow morning.

He has an IEP at school and we have daily behaviour reports sent home they have been in contact to try and get a TA to be with him in the afternoons as this is when the teacher has amitted she can't cope with him as she is on her ownthey have changed tatics with him this week and as usual it has tworked but he follows the pattern that when they do this it will work for a week or so then he reverts back.

We never got a report stating that his behaviour was too extreme for them to deal with and as for as I know the SNHV as left.

We have a diary I write in everyday with what he does as I write in when his obbsessions start and write down events that may be a trigger to the behviours so we can try and work out whats going on the CDC and IAPS have both recieved a copy of these to try and show them what he's like on a daily basis

We are in contact with Surestart for the 2 younger dc's as were i like is only small and it was the easiest way to find playgroups and such but they have said as he is in schhol now theres not much they can do but I will definatly look into Homestart

I'm sorry if my posts seem a little rambles my head is just everywhere right now and I'm so confused as I'm trying my best with him and the others but so far asking for help isn't getting me anywhere

Glad you've managed to get a gp appt. Do chase up the SNHV dept, they must hae a record somewhere. KEeping a paper trail is pretty vital so follow up all your discussions with a summary of what has been agreed.

DOes your DS2 have a statement of educational needs in place? If not, the fact his teacher is struggling to meet his needs would indicate he should get one. www.ipsea.org.uk have details of the statementing process. If he is better supported in school it may help help his behaviour at home as well.

Another option is to approach Social SErvices for respite. It is not something i have experience of, though from reading posts on this board, some families regret asking for help, others just find them ineffective, and some find them helpful.

All of my posts on this board are rambles so no need to apologise! YOu have a lot on your plate and i really hope you can access some helpful support soon.

Hi. I think your first port of call is to ring the Child Development Centre, and explain that you are being passed round the system since they first assessed your ds.
Insist they make the referral to the correct behaviour therapy since they advised it. Say, you have waited long enough and will not wait while your GP re-refers you.
Im afraid, that you will discover that in the world of SN, you have to shout loud and keep on top of people or you get nowhere.
If you think you will find it difficult to be assertive over the phone, then write a letter or e-mail.(Whatever you do, keep a copy of letters sent and to whom).
The Child Development Centres statement that your dss difficulties maybe due to speech and/or behaviour,seems a little strange. His speech and Language and behaviour may be stemming from his ADHD and Autism, but Not the other way round
If, you do not get any joy from doing the above, then write a letter of complaint to the Head of the Primary Care Trust for your area and request a response in writing from them.
If, the Child Development Clinic are reluctant to proceed with your ds, ask your GP to refer you to CAMHS,(child & adolescent metal health service), who are able to carry-out the necessary assessments for a confirmed dx of ADHD and Autism-ie, Connors Rating Scale and ADOS.
Whoever you talk/write to, refer them to Early Intervention and how important it is and that your ds is almost 6yrs old now.
Let us know how you get on. HTH.

so sorry you are going through this struggle to get the right help for your child and the rest of your family... I really do sympathise - you're at the worst time in terms of dealing with the authorities; it's worth keeping on trying until you get somewhere, because once you find the way into the services, you can unlock help in lots of different areas.

maybe you can you speak to the school senco or headteacher: maybe they will give you some advice on getting a statement; it would be in their interest too.

In our area there is a central service especially for children with disabilities and special educational needs, based in the 'child development centre'... I bet there is one in your area too; it will just be a matter of finding them, and going to talk to someone. maybe the sure start nursery will be able to tell you how to contact them, or the school senco or the LEA special needs section( my experience is that GP's and HV's are not necessarily up to speed on all the other services available). good luck

Hi Lauree

thanks for your reply

I'll arange to speak to the SENCO at school and I'm at the CDC tomorrow as he has an ocpational theropy appointment so I'll ask abou the central services then.

They are going to have to arrange some kind of help for him as yesterday wqhen i went to get dressed he climbed on the kitchen side and got a knife out of the cupboard and went for his older bro and his sister and he as started to try and hurt the baby I'm really scared at the moment he's really going to hurt someone it just seems to go from bad to worse with him at the moment and when he does these things and you explain that is dangerous and he is going to eriously hurt someone he says sorry but shows no remourse and I'm not sure he even understands

let us know how you get on at the meeting... good luck x

Hi

Well a brief update apparently school have already applied for a statement but was turned down but they are still trying to push it through was a bit shocked as i wasn't aware they had applied for it but can't complain as they are actually trying to help and as of next week he'll ave a ta 2 afternoons a week.

Got a phone call as we got to his appointment this morning and it was cdc they had recieved a fax from they gp n have arranged for him to see the consultant a week on friday so hopefully this time they arrange for the right person to help this time :)

This is all good news! thanks for letting us know;
keep the momentum up while the school is on your side... You can always appeal a decision not to allow a request for a statement, and later if you are not happy with the statement you can appeal again. In this case a ground for appeal might be that the school didn't obtain the parents' full input before the request for a statement went in and so didn't have the full story. ( they should be keeping you in the loop anyhow!) .

start keeping files diaries and record of everything... conversations with teachers, incidents, anything. the TA will be able to do a report as well in support of him needing extra help... whatever you're doing, you're starting to get results, so keep going! IMHO actual 'help' or therapy whatever you want to call it is much more important than getting a medical diagnosis, although that's important too, and having a 'label' for the problem can be useful in getting access to the services you need.

Stick around here, and you will find lots of great people to talk to about this x

Was just reminded of something reading another thread... videos of your child having an episode of whatever it is he does might be useful.

And get yourself mentally prepared, because the statement process involves you, ( and the professionals around your DC ) reporting on your child in the worst possible light; it's incredibly upsetting to read the reports, but you (and they) have to lay it on thick to get the statement, so be prepared to read some very upsetting things about your DS as you go through the process. It'll be worth it in the end.

Hi

Well seems like complaining and kicking off seems to be working head teacher is going to see SENCO about getting me a copy of the statement application plus ds3's teacher is writing down a summary of his behaviour and the problems they have.

Also recieved a phone call from the school nurse she is coming to see me in the morning to discuss his behaviour and she is going to try and arrange a CAF meeting so we can get everyone together before next friday and all gather as much evidence to back up what I'm saying. I'm also going armed with all the information you have all given me so fingers crossed they'll stop passing us around.

Ds3 has to come to the hosital with me so as my back up plan I'm going to tell them if we continue to be passed around and don't recieve the help they were so admant he needed I'm going to contact a solicitor and social services a friend who has just told me she is going through the process said she had to do this to make them listen and help. I no it probably sounds extreme but I'm really worried what will happen to and with him unless he recieves help and I really dont htink all this is fair on him.

go girl! you sound like you are on a roll with this now x

hopefully but found out caf not til 5th november but spent all day ringing around and everyone involved at the school is willing to help get everything together for next week so this weekend will be spent sorting through it and putting it all in order [hsmile]

That all sounds great. Agree the school should have informed you they were applying and also I believe the LA should have written to you with their decision. It is a massive document but the SEN Code of Practice contains all the info on what school's and LA's are supposed to do. www.teachernet.gov.uk/_doc/3724/SENCodeOfPractice.pdf.

Hi

Went to the cdc today and luckily we saw the dr who did the griffths test (sp) on ds2 so he was already aware of ds'2 history he rang iap n was told they will treat ds2 as a priority so we should hear in next 6 weeks about a visit but they said with his learning difficulties its probably gonna be transfered to cahms.

The dr said rather then just wait he was making a referal for cahms himself and asking for it to be a priority he is also contacting all the people involved to put them up to speed with it all he also said we need a social worker to help make sure we are all being supported. he's suggested respite care to not only give me a break but also the other dc, We have also been given a contact number for 2 organisations for support with ds2 at home and at school.

sorry that its all rambled i'm writing it down on here and paper so i dont forget