liamnmrs

Hi Sharon, I am still battling with the school even now. Before when I was getting no where at all I must admit I probably could have handled the situation differently. I demanded that I be refered to a different person at CAMHS via my GP. I made a diary of events and videos on my phone of various things that he would do. I took them all with me to the appointment and explained how the school had treated us. It was then that CAMHS went in. As he is struggling with work in school we had already been at school action plus for a while so as no progress was being made I complained and complained till the ed pshyc was brought in. I also used Parent Partnership to help me liase with the school as they could convey my concerns in a "less emotional way". If I had not trusted my instincts and fought for what I felt he needed we would still be no further now. The second person I saw at CAMHS had no doubt and sympathised with how we had been pushed from pillar to post. I know as parents we are not experts but we know our children and it is so frustrating when we are not listened to. take care x

Hi Sharon, I feel like I have just read a description of my son. He is nearly 7 and only diagnosed in February this year. I am still new to this so will probably not be of much use advice wise but just wanted to share our experience with you, as I think this site has helped me so much in knowing I am not alone. My son had speech therapy since being 3 and no one realised. He has seen an ed pshyc on numerous occassions over the last couple of years but they mostly focused on his lack of ability in the class room. School kept and unfortunately even with diagnosis keep saying "he is fine ". However he is making no academic progress or very little and I am told how he is happy at school yet when I observe him in the playground he is stood on his own or crying. As soon as I pick him up he is like a little time bomb and just explodes. My GP finally refered me to CAMHS two years ago after I finally persuaded him that this was not a reaction to my divorce. After our records being lost we were finally seen by a second consultant there who after our first visit went to the school to observe L. He then called us in and told us there was no doubt L has asd. He also suffers from sensory issues. Over the last couple of years our friends and family has disappeared into the background as L was seen to be a very naughty little boy who I was not controlling. The school also tried to send me on a parenting course for which I think they still regret to this day with the response they got from me ! With the diagnosis I have learnt so much. Visual timetables have been fantastic for us and social stories, these were things I had never heard of before. I must admit I am not focusing on L's learning to much at the moment as I am still learning to improve his quality of life. so homework takes a back seat. I was also told to complete the nas ABC form ( which is Antecedant - what occurs immediately before an outburst, Behaviour - what happened during the outburst and Consequence of the behaviour what happened after ) This has helped us in looking for triggers and also assists with planning. Anyway we are still waiting for the school to apply for a statement, as he has been on an IEP for two years with no progress. CAMHS have called a multi agency meeting with the school to try and get things happening more in the way of support. Speech therapy are now visiting him there and assist with the teachers and the LEA have sent someone in to educate them on ASD's. As for friends and family not understanding well to be quite honest - its their loss. I will make no excuses for my son, he is as he is and its us that have to learn his ways. Easier said than done especially for his younger sibling. However thats how things are. I now marvel at little acheivements and yes we may make two steps forward and another three back on some days but hey ho its a case of trial and error. Sorry I cant be of more use but I hope things start to move in the right direction for you. I am sure you will get loads of info and advice from here. I have found it a sanity saver ! Best wishes and take care x <'>

Thanks everyone for your advice. He has had another one today and have noticed he always says he has a headache and tummy ache just after. He also says he is really tired. Have spoken to doctor who is reluctant to refer back to ped as on last visit becuase he has SPD he would not let her examine him, which I dont know what I supposed to do, this cant be helped ? have explained my concerns again and got an appointment for CAMHS for next week so hopefully they may take me more seriously. Will try and tape them as I know this has worked in the past with things. Thanks again for your help.

Hi all, just wondering if anyone could offer any advice or experienced similar. My son is 6 and has asd, he has recently started to forget where he is or what he has done. He comes home from school and asks if he has just got up or has he been to school today. Have taken the boys out over the easter holidays and on the way back he has asked "are we there yet " and is very distressed when we try to recap what we have done. Before he has one of these "spells" he becomes very pale and his eyes just seem to stare ( sorry I dont know really know how to explain this ) I have asked doctor and CAMHS for advice but they are saying it is just due to short attention span?? I am not convinced as he has always has a very short attention span but these incidents are increasing. Any advice gratefully received thanks

Hello Alisha, I have a 6 yr old who was diagnosed in Jan, though it was picked up on in nursery as well. I know exactly how you feel and am encountering the same problems ourselves. It can be so frustrating that I feel I am constantly justyfying L's actions, however am learning to think who cares what they think. He is my son and I am proud of him. You will find this site a fantastic source of information and comfort. Take care Amy x

Hi Finding this post has been such a relief. Finally we have found others that sound so like L. He has always been a quiet little boy who does not like any attention and struggles with involvement with his peers. He has been diagnosed with ASD but I am told he is always smiling at school and appears fine. The teachers have had support in school who have advised the use of visual charts and the mood thermometer which he uses at home. However the problem comes when his teacher asks him to use them and he will always say he is fine as he hates the attention. He admits that he feels being good in school means being happy and can not see any difference between the two. His school work is appalling yet his ed psyc test results are just coming in at average, apart from the verbal communication and empathy sections. Yet he can not do the work in a classroom environment. I am at my wits end trying to explain how the episodes at home where he is desparately unhappy and stressed are a result of the anxieties he suffers at school. School are currently collecting evidence for a statement however as he does not like support and shy's away from it, they are not convinced that it will be beneficial. As soon as he comes out of shcool he releases all of his frustrations and it is a constant battle of tears and rants (Idont know what to call them ) till bedtime when he is then troubled with nightmares and wakes frequently despite taking melatonin. Have just had a meeting with school , who advise that the things they have been advised to do, dont work , which of course they wont because he is so anxious and trying to conform they wont. The teacher has asked if I have any ideas what they can do and to be honest I dont. The room is a typical classroom with very busy walls, all of which I know are to much for my boy to deal with. He can not handle the noise of the classroom and has no real friends, ( though they have started a circle of friends programme to assist with this ) This has been ongoing for nearly five years and no one sees what we as parents have to deal with at home ( even though we love our children desparately) or the impact on siblings and general family life. . Does any one please have any ideas as to how school life can be made easier for him or who I can approach for help. We have been refered to CAMS who made the diagnosis but dont see them for another two month, have seen a pedeatrician who could not examine him in full because he does not like to be touched, have been through two years of speech therapy which they have said is now no longer of any use and we need assistance in school but can not have this unless we have a statement, SENCO has not come across this before and is unsure theirseleves,we need to see a ot but still waiting 18 months later with a further eight months to go apparently. Sorry to rant but was really hoping to get something from today but yet again it has been a complete waste of time. Have also been referred to behaviour management and parenting classes who after a six week observation have said they dont really deal with this kind of problem and any way we are dealing with things really well at home- Its not us the parents I am concerned about - its my poor little boy who cries himself to sleep in the upmost distress everynight and I can not seem to find any way of helping him. Sorry to go on - any advice greatfully received thanks Amy xxxxx

Thanks jsmum i will check that with her. At the moment I feel like I am fumbling around in the dark. What you say is so true, have been promised so much over the last three years and yet it never happens, we just seem to be banging the same drums all the time.

Thanks everyone. Saw a different speech therapist yesterday who thinks by the time we have the statement l's needs will have been left for to long. She has offered to go into school and explain the impact that school has on his behaviour/stress levels at home. She will get them to look at the daily communication book and explain how to use 'more effective communication' in it, as well as explaining visual time tables etc. So hopfefully things may start moving in the right direction now. At least there will be finally some one in school who may understand. <'>

Hi Everyone, Just wanted to introduce myself and my family. My husband and I have two boys aged 5 and 6. Our eldest has asd, spd, learning difficulties and speech problems. After waiting four years for a dx we have gone through so many mixed emotions. I have found this site such a source of information and comfort to realise we are not on our own as on dx from camhs we were sent home with book and a head full of questions. Have only just plucked up the courage to register as not very techie. School have applied for a statement but still find L's condition difficult to understand and come out with comments such as "he may grow out if". which is just so frustrating. They have just received some training on autism so hopefully things will improve there. Any way just wanted to say Hi and look forward to sharing experiences with you all.