mum22boys

2 years from first visiting GP to getting diagnosis. That doesn't include the 3 years I spent chasing up the health visitor with my concerns!!!

Hi, For a while now I have wondered if M, nearly 8 years old, has ODD. I've kept it to myself as support following the ASD diagnosis was non existant. We have had lots of problems at school with behaviour. Letters home etc. The other day i was talking to his private tutor who mentioned she felt he has ODD. Today we have had a meeting at the school and the Head has now said she feel M has ODD. She had printed me out a sheet on it. We agreed we thought so as well. I don't think the Head has come across anyone with it before and she is not certain how it is diagnosed, She thought maybe a psychiatrist not psychologist. Has anyone got a child withh ODD as well and how do you go about getting diagnosed? Also how does this present itself with Autism as well? Any advice would be welcome. Thanks. mum22boys

Thanks for replies so far. When I have my head together tomorrow I will look on the ipsea website. My head is pounding at the moment with the utter shock of it all. I never expected the head to stoop so low as to do something so sneaky behind our backs. I agree with you Cat I think the Head does see us as the problem. Personally I think she needs some kind of psychiatric help. I know I can't leave him in the school but really can't face moving him, then applying for stat assessment and maybe (hopefully) moving him again. I will be informing the school I am applying. DH wants to go and see her Monday am, to confront her. I think we need the weekend to get our thoughts together and decide how we are going to handle this. I am wondering if the consultant may ring her tomorrow to back up the diagnosis and tell her how wrong she is. Thanks for the advice and support <'> mum22boys

I am in desperate need of some advice. M was diagnosed ASD a year ago.Prior to his assessment it was clear the Head did not believe any of M's problems existed. However we were aware of them everyday. Since his diagnosis he has had very little support from the school. He is nearly 8 and is barely reading and writing, working to reception/year 1 levels (he is in yr 3). His behaviour is all over the place, he wanders in class, won't work, has temper tantrums.... A few weeks ago we were called in regarding his behaviour. He has started picking up chairs and tables. The Head said something needs to be done regarding his behaviour but to be honest didn't really come up with much. I did however get the impression she doubted his diagnosis as she kept making comments. She said she can't understand why he doesn't stand up when the other kids do in assembly or clap or sing etc.. she said that was not a child with autism, a child with autism would follow others. I disagreed but said nothing and thought i'd raise it with his consultant. Today we met M's consultant again. What she told us has shocked us. She had a phone call last week (she didn't directly take the call but has the message written down) from the Head saying she and other health proffessionals (we have no idea who) doubt the diagnosis and want him re-assessed!!!! Luckily his consultant is clued up and she didn't return the call, she waited to speak to us. She asked if it was something we also felt. Which we told her we do not doubt it at all. M was taken out the room so I could talk to her about school. I burst into tears and asked her to tell me whether he has autism or not. She said she has no doubt at all, she is 100% sure he has autism. She summed it up by saying children of 8 years old do not usually crawl into her office on all fours, sit on their mums lap, not speak and not make eye contact. He definately has autism. What the consultant can't understand is how the school will not accept it. We are furious. DH wants to make a formal complaint about her going behind our back and speaking about him to the consultant. How do we go about this? Also I now know the time has come to just go ahead and apply for stat assessment myself as she will never do it and we want him out of there and hopefully in a special school. Please can you give me advice on the stat assessment process when doing it yourself and also about complaining about the Head. Thanks mum22boys <'>

Hi, M is nearly 8, diagnosed ASD a year ago. He has always had big temper tantrums since he entered the 'terrible twos' and never came out the other end, i'm sure you understand me!!! When he started school he would contain himself all day and explode in the playground every evening. This continued until the end of year 1. Once in year 2 he started 'exploding' in class. Nothing too bad at that time. He would take himself out the classroom and run up and down the corridor or would kick and scream when I left in the morning. By the end of year 2 we had been called in because he hit his pregnant class teacher in the stomach. I at the time told her I was sorry she had been put in this position of teaching a child with ASD who had no support. Now in year 3 his behaviour has got worse. He has had lots of change and upset this year as his new class teacher (who also turned out to be pregnant) was off on long term sick just weeks into the new term. She had however identified how hard he was finding school. By now he was crawling up and down the carpet every afternoon and not working. She applied for exceptional needs funding and was turned down. She came back for a couple of months then had to start maternity leave 3 months early through health problems and he had 2 supply teachers. The school tried to be consistant and the same two teachers shared the week. Things then got worse. He was getting frequently angry and refusing time out and walking out the class. Then he started picking up chairs. He wanders the class not working. Things aren't good. The school employed another class LSA so there is someone in the class all day but this has had little effect. Last week I met his teacher (long term supply). He told me how he won't work, wanders the class, never writes and constantly answers him back. He wanted to know what he could do to help, but I just don't know. Other than provide 1-1 which they won't do I am lost for ideas. The Head has finally admitted she doesn't know how to handle his behaviour. They have input form the AA teacher (who i'm convinced is just a text book advisor having never had any practice of working with kids with autism) and also the ed psych. The school says they put the things in place they are told to do but it's not specific advice for M, so it doesn't work. Today i've had a letter from school telling me they are not happy with his behaviour. They say they understand the temper tantrums but feel he is sometimes deliberately hitting out. He is hurting the other kids etc. My husband is not happy about this letter as we have always approached the school because of m's problems but they have never acknowledged them. The school is very reluctant to apply for statutory assessment as they believe they won't get any extra funding anyway. Me and DH are now of the opinion he may need to go to a special school now as he still can't read or write properly. He has a private tutor who has been working with him for 15 months and she says she has made no progress with him. He still can't blend his sounds. Both his old class teacher and the private tutor believe he also has dyslexia. I feel we need the school on our side if we apply for statutory assessment as she can be aukward. Tomorrow we have our annual appointment to see m's consultant. Is there anything she can do to help us with stat assessment? Any advice would be welcome as I feel i'm not getting anywhere. Thanks, mum22boys <'>

M's school applied for exceptional needs funding for him. It was turned down at district level because as his teacher put it 'kids with autism don't get exceptional needs funding!!!' Seems to sum up the Hertfordshire funding system nicely doesn't it. As for statements because they don't tend to put hours on statements or allocate extra money, as the school is expected to fund this from their standard SEN budget it seems our schools Head is of the opinion statements are worthless. She is reluctent to even bother applying for statutory assessment. Yes I know I could apply , but the way she works if I did this and it wasn't 'her idea' she wouldn't back me but just make it 10 times more difficult for us. So if you ask me the whole system sucks!!!! The Head will only bother to apply for stat assessment so we can try to get him into special school when he gets to the end of primary school. Why is this made so difficult for us?????? mum22boys

Thanks to those that have replied so far <'> I am not suprised by the responses but I am angry that our children get diagnosed then we are sent away to get on with it. I wouldn't expect a child to be diagnosed with for example cerebal palsey and not receive a wheel chair if they needed one so why is it our children are diagnosed with Autism and not even any skills to help them cope for the rest of their lives. It makes me so mad. This is a crazy situation. I WILL be asking lots of questions at M's next appointment. mum22boys

Hi, I haven't been around for a while but i'm back for some advice. M was diagnosed ASD a year ago. There was no real shock to the diagnosis as we had been pushing to find out what was wrong for 2 years but the consultants explanation to the 'extent' of the autism came as a bit of a shock. However we knew he would get a diagnosis. I don't know if reality has only just sunk in but I am now really concerned that M has no support, no mention of getting support or help and i'm starting to wonder if i'm still going to be having my child throw himself on the floor when the slightest thing is different or not how he expected when he is 15, 16 or older... How is he ever going to understand that things can be different, or the outcome to something might not be as he expects if there is no one giving him support and teaching him these things. Will he always throw himself across chairs, rock back and forth and scream when he can't cope or will things change??? The school (he's in mainstream) have now admitted they don't know what to do about his behaviour. They have the AA teacher out to him and the ed psych. The school says they follow the advice and stratergies but they seem to be geared up just to autism, not M as an individual. M has a consultants appointment in 2 weeks which i intend to ask these questions. What i'd like is to know if anyone has received help and support for their child after the diagnosis, and if so what kind. Thanks mum22boys

Hi, We've recently (last week) been on holiday to Spain. I notified the tour operator in advance that my child has special needs. With the last tour operator I had to fill in a form detailing the problem. I asked for the front seats so he has more room, no one in front etc and asked for pre boarding as he finds it stressful getting on a plane with lots of people about. I also wrote that he may need to be carried if he gets stressed. However in the past I haven't had to fill out a form and just explained his needs over the phone. Our tour operator this year was very understanding, even asking passengers if they minded swaping seats with M as he was allocated a seat 3 away from his original seat he had when flying out. they then offered to get a 'buggy' to meet him when he got off the plane to minimise stress. There are some good people out there Give them a ring and explain mum22boys

Westie, i value anyones advice, so thanks. Funny enough I only just finished a course last night, a six week one on ASD. So when they suggested I go on a parenting course I said 'how many do you want me to go on?' They asked what i have been on and i listed this last one, the NAS earlybird course, local support groups etc... What really got to me was the one they want me to go on is for a general special needs parenting course. Now it is run at the same time the ASD one ran and I was told by the people who ran that course that they started it because the special needs one didn't cover enough Autism issues!!!! Now what confuses me is that if as they say my child is 'normal' and has no needs why do they want me to go on a special needs course???? I will be asking SN Health Visitor when she phones! But yes I will probably attend because I will never have anyone throw back at me that I didn't take their advice. I am seriously wishing tonight we had never had R put on the CDAC list as the peads wanted. This has been one day I never want to repeat again. To make a parent feel they are not doing an adequate job when you have one child with autism and another with behavioural problems could really be damaging. I am trying to forget what has happened and pick myself back up again, but i know it will be hard. Thanks for your advice, mum22boys <'>

Thanks so much for your replies, they meant a lot <'> Me and DH were talking about todays events and both feel we were patronised. It was continually implied that we had brought these behaviours about. basically as DH said they had made their minds up in the prof meeting before the assessment. We told them we felt they were saying we were bad parents and they said they never meant to imply that at all. every example we gave them was faced with challenging questions. Such as, we were describing that he was sent out of swimming lessons every week for hitting and kicking and screaming at the swimming teacher. She would tell me she couldn't have him in the pool. The consultant said ' what did you do then?' So I said 'well take him home'. She couldn't understand why and said in not so many words that we should have perservered! WHAT. Oh but they know best .... because they work with autistic children everyday...and yes we live with one which is a hundred times harder. I feel very disappointed with today. It's not we wanted the diagnosis.... we wanted answers not the finger being pointed! Thanks again. mum22boys

Hi, R had his CDAC assessment this morning. He is 4 years old and was referred there after being seen by 2 peads within the last year. My elder son M is 7 and was diagnosed ASD in April. R's assessment was with a different consultant and was a very different set up. There were 6 proffessionals there studying him and us! It was becoming very obvious half way through that they were hinting the behaviours R was displaying was down to our parenting! Now the things we were concerned about were things like having to have his cereals lined up every morning, walking on a certain side of the road, screaming if when i collect him from nursery that i walk the wrong way round the table, forgetting his lunch, only eating lunch in car when it is moving, insisting i strap him in car, push buggy etc.... the list just goes on..... He also is displaying simular social problems to his brother, talks to kids in class but wont acknowledge them out of class or interact with them at parties etc. His play skills are good and we were half expecting no diagnosis although it was the peads that have said there was social/communication problems. They have said today that his challenging behaviours are because we are letting him control us. I can't see this after all he is not throwing screaming fits and tantrums because he can't have a bar of chocolate etc it is because i am walking the wrong way round a table! They just want to send us on a parenting course! I feel very upset and depressed over this. It made me wonder if they thought M shouldn't have had a dianosis and we were just bad parents. M is very different and has poor eye contact, no imaginative play and very poor social skill. This has left me feeling a failure as a parent and I can't see why R's behaviours are down to us. Has anyone else had this? I am now concerned that several years down the line that R gets worse and there is no help available because they just see us as not parenting properly. Thanks for reading this and i'd be grateful for any feedback and comments on what we've been through today. mum22boys

Hi, We went through assessment with M(age 7) in April this year. They asked all sorts of questions from birth to how he was as a baby, favourite toys he had, sleep patterns, toddler years, pre-school. They ask everything from obsessions to temper tantrums. they observe eye contact, play skills and look at all reports they have. Good idea to take copies of any reports you have as M's consultant asked if she could keep them. They had previously observed him at school and to be honest they went more by our views and what they observed on the day than what the school said. The whole thing took about 2 and a half hours. We went away for half hour and came back to be given the verdict. We too will be going through the assessment process again in a couple of weeks with our youngest child who is 4. He is to be assessed on 21st Nov and his observation in school is 14th Nov. We are starting to prepare ourselves. lots of notes on all the things that worry us and all the strange behaviours he has. Good luck with yours. Will be thinking of you. mum22boys <'>

Just read your post noogsy and I was going to ask Cariad the same thing, about getting a pass at the town Hall. We go for new year so would like to be prepared. we have visited a few times before but this was prior to M being diagnosed so didn't get a pass. Kids are really looking forward to it although i feel stressed just thinking about how stressed M will be with all those people about!!! Having said that he will say he had a lovely time. Glad your trip went ok. mum22boys

Hi, My eldest, M age 7 was diagnosed ASD in April. We had spent almost two years waiting for assessment so by the time he was approaching 7 and we had plenty of time reflecting on the behaviours that we were 100% certain he was going to recieve a diagnosis. Which he obviously did. Seven months later and we have just found out our youngest son will have his assessment next month. I am panicing so much. I am so worried whether he will recieve a daignosis or not. So I am worrying that if they diagnose him also I may think years down the line that he shouldn't have been diagnosed IYKWIM. Then I worry if he doesn't get a diagnosis and he has ASD!!! Deep down both me and hubby think he does have it also.He is very different from M but the behaviours are there and he has a speech problem as well. I suppose my concern lies with what Nursery will say because they aren't really 'with it' and see no problems (they didn't with M and it was staring them in the face) so I know they will say there is no problem. I have them all at home!!! The week before the assessment he is going to be watched in class by the SALT for the CDAC. Obviously i've been through one assessment this year so know what questions will be asked on the day and I know parents views are taken into account more than the schools. How was it for the rest of you in the run up to assessment? did you worry about everything like me? Thanks in advance! mum22boys

Kathryn, I think the new system has just confused things with regards to statementing. The teacher decided M needs help NOW. Not in 6 months time if we go down the statementing route. This leaves things hazy if you ask me as if he is sucessful he may be awarded the funding for the entire key stage 2, which in M's case will be just under 4 years. However the school know we want M statemented before year 6 as we want the option of mainstream or special school. I have no idea how things work though if a child has exceptional needs funding. If we go ahead and apply for a statement and he gets less than full time support then does that mean we lose the exc. needs funding and get less support? Do we if he is sucessful leave it until year 5 when we need to start thinking about secondary schools to apply for statutory assessment? This system has made things confusing. I want the option of special school or mainstream later on and really if a child gets exc. needs funding i feel that should give the choice. not just if you have a statement. Hope that makes sense???? If you do know the answer to my question reg statements and exc. needs funding could you please let me know. Thanks. mum22boys

Hi, and thanks for your replies - positive and not so positive M's class teacher is the key stage 2 member of staff that goes to the cluster meetings. She was so concerned after having M in her class for just two weeks that she made the decision to apply for exceptional needs funding. This has been based on all events in the classroom (the crawling up and down the carpet, rolling up and down the carpet, refusing to work particually if another child has misbehavied, hitting teachers and children, and running out of school). He has a LSA with him in the morning but he needs more support. She took his case to the cluster meeting and all the schools said he has exceptional needs and agreed his case to go to district. He is now waiting the EP assessment although his teacher believes the EP requesting to see him is not directly linked to the funding. M is the first child his school has taken to cluster meetings so they don't know what to expect, and neither do we. As I understand the meeting takes place after half term and is purely based on the teachers report. They have applied for a full time TA, a specialised company to come in to teach him social skills and money to create a room for him to take himself to when stressed so he doesn't run off and lash out at everyone. We are keeping our fingers crossed and he is lucky. I will keep you all informed. mum22boys ps Lizzie, I am in the same LEA as Kathryn, so will also be in the same as you.

Hi, Today I found out M was put forward for exceptional needs funding at the school cluster group. They have agreed he has exceptional needs and now his case has to go forward to the district to see if they agree. I am so pleased we have passed the first hurdle. Has anyone had a child been awarded exceptional needs funding and if so how did the process go. Would also be keen to hear from anyone that had their case turned down. Thanks Mum22boys

Yes it's just the standard meeting, but generally every other teacher has allocated us more than the 10 min as they know we have more to discuss. I will definatley get a meeting with the AA teacher sorted as something needs to be done. jlp, It was comforting reading that you obtained a statement for your son mainly because he wasn't accessing the full curriculum. This is why I believe M needs statutory assessment. Thanks for your comments, mum22boys

Hi Pumpkinpie, Thanks for your reply. I know you are right - something needs to be done before it is too late. The meeting I mentioned is just a teacher/ parent meeting which is the week before the Autism Advisory teacher comes back in. So I think we need to discuss the issues surrounding m before she comes in. Usually i get a time to come to the school when the AA teacher is making her visit so I can express any concerns I have. The Head is the SENCO so she will see the AA teacher at some point. M's class teacher is also the Key Stage 2 INCO (Inclusion co-ordinator). I am sure that M's teacher will honestly tell the AA teacher what problems she is having with M. yet I feel without a statement things will not improve. I know I can apply without the school but it would be so much easier if i have the school and AA teachers backing. mum22boys

Hi Karen, Thanks for your reply. Even though my relationship with the school has been VERY rocky in the past they are trying now. They prepared him very well for his move to year 3. He visited the classroom with me, his new teacher and the head before the other kids were told who their new teacher was. He then went with his class the following week to have the afternoon in his new classroom with the new teacher. He has a visual timetable and any changes are explained to him beforehand. One of the big problems the teacher faces with him is his inability to cope with other children misbehaving. He has always had a reputation for being the 'class policeman' but this has got worse. If another child misbehaves and he feel the right punishment (usually the child being given a warning) was not given out he will refuse to work. Thats when he starts crawling round the classroom etc. I feel he needs more support than he is currently getting. Obviously at parents eve when she has had a chance to really get to know him then I will be asking what support they intend to put into place. I appreciate your comments, thanks. mum22boys

Hi, M is in year 3 now (7 years old, diagnosed ASD about 6 months ago). To be honest his behaviour in school has been going down hill since reception. His teacher last year was useless, didn't want to know about his problems and brushed the whole lot under the carpet. She did start a home/school diary which she only wrote in occassionally and I always felt I didn't get the whole picture. He has an autism advisry teacher come in , but last years teacher obviously told her he was fine in class, until her last visit. The AA teacher saw the 'real M' and said she was concerned. She agreed to visit the school at the start of October to see how he has settled into his new class. I asked her about applying for statutory assessment and she said she will see how M is in class in Oct. He's now in his new class with a really lovely teacher who is interested in helping him. he also has in the class in the mornings a lovely Teaching assistant who generally helps out with all the kids in the class. His teacher had started up a home/school book and to be honest I am shocked by what I read. Every day he is refusing to do the work. He may crawl up and down the carpet, roll around on the carpet or walk around but he will not do the work. It's not every lesson but maybe 2 lessons a day. Thursday because he was told his class teacher was going to be out he went mad when i got him to school and by the time I was at nursery with R , M had escaped out the class and ran to find me. The school did hold him until the caretaker had shut the gates. It took ages for us to calm him down and then he again refused to work. He can't afford to not be doing the lessons, he can barely read (he's only just grasped reception words and a few year 1 words) he can barely write (it all needs to be translated!) and I don't know what to do. We pay for him to have a private tutor after school twice a week. I am going to leave it till parents eve which is the week after next and ask his teacher what happens when he refuses. Does it sound like I could have a chance applying for statutory assessment as I believe he needs someone with him in class? Has anyone else experienced this? I would appreciate any thoughts on this, Thanks. Mum22boys

Hi joybed, I agree you need to discuss the problems with the HV. Although i don't have the large age gap I am in a simular situation to you. My eldest is 7 and was diagnosed ASD in April after a 2 year battle to get to the bottom of his behaviour. We knew it was autism, in fact my husband had been saying it since M was 2, I just couldn't accept it. By the time M got to reception even I agreed we needed help as we just hadn't come out the terrible twos! During our wait for M to be assessed we started to noticed things with his younger brother. R has just turned 4 and from the age of 2 until he was 3 we 'studied' him. I just felt I couldn't go along to the Hv again with another child. At this time M hadn't even been diagnosed and I was saying R's behaviour isn't right also. I felt it was my fault. As I said by the time R had turned 3 I was convinced things weren't right and I went to the HV. I had a list of his behaviours and she agreed things needed to be looked into. That was a year ago now and we have been told R will be assessed in Dec. He has been seen by two pead's who agree he is showing signs of autism although he does have some good signs. No two children are the same. Mine really are very different but both display different levels of severity in their problems. This is what made us seek help for R, the fact that the things R was doing was not the same as M. He wasn't copying. M has terrible tantrums, can't cope in new places and has no imaginative play and very poor social skills. R however has severe anxiety problems but can cope with change as long as he's been made aware first. He can have bad temper tantrums but not as bad as M. He has imaginative play but it's repetitive. You need to find out for definate. I think from reading your post you know deep down he may have it, just like we know R may. As for your husband, I agree maybe he will come to terms with a professional telling him. I didn't have the problem with my husband as he identified it first but I will say i think he found it hard understanding all M's problems and behaviours. The best thing we did was go on the NAS help programme for the day. It taught my husband a lot and made him understand M a lot more. Is there any course you can take your husband along to? Even if you tell him it's to support you. Good luck, I know how hard it is to do the journey twice. mum22boys <'>

Hi, We are off to Chessington tomorrow on a coach trip for the day Does anyone know if you can hire a buggy or maybe one of those push along cars there? DS2 is 4 but not too good at walking very far. We don't really want the hastle of a buggy so would rather see how day goes and hire one if we have to. I don't mind if we have to have lots of sit down periods so he can manage but could do without trying to push a buggy through hoards of people. I have been online and can't find any info. I have printed the maps off for the boys but does anyone have any advice on the trip. They have never been there before Thanks mum22boys

Hi, You are not the only one fed up with school already!!! M went back to school today and at lunch time he had tried to run away His new teacher seems to be very good, it is just the poor communication throughout the school which makes it all the harder. M has a big problem at the moment with eating with other people. He says watching them eat makes him feel sick and he refuses to eat if sat with others. I explained the problem to his new teacher and she agreed to take him to the hall at lunch and get him sat on a bench alone. Apparently that was ok until another child sat next to him, so he moved, then another child sat next to him which he ignored. A teacher then walked into the hall and said to M and the other child they were to sit at a table. He stood up shoved his lunch in his bag and said thats it i'm running away. And with that he took off. The dinner lady (who is also a friend) tried to run after him but didn't catch him in time. His class teacher walked in the hall at that moment and asked where he was, she was furious when she was told what had happened. He was sent home with a new message book. At the end she wrote asking me to make sure M doesn't wear his elastic bands to school again. This has been his obsession for the last few months, picking up the postmans elastic bands and wearing them . Easier said than done. They have no idea how hard it is trying to break an obsession. he went mad when i told him. Yes I agree there is a safety matter to it but M doesn't understand that! I feel worn out already. Then today I found out R is about to have his CDAC assessment. I can't believe i'm going through it again. Hope some of you had better first days back. mum22boys <'>