lilbec

Thank you for all your comments and I will follow up on all you have suggested. The school he is currently at is a specialist ASD school attached to a secondary but it is still brand new and so is not fully up and running yet. The good news is that I had a conversation yesterday with a friend who is a SENCO at a primary school and is very knowledgeable. She said that the LEA was going to increase the Statement age to 25 beginning in Sept '14. She seemed pretty certain. So that is one thing that is a relief to know. The head is working hard to get him extra work associated with helping out younger students with sports and hopefully even next year it might be paid as they do with their Sixth Formers. For him that is an excellent motivation ;-) Otherwise I don't think he is yet motivated enough to do any additional work to cover missed topics. I can mention it though and sound it out. I suspect the head of the secondary school is a less amenable person and more rigid about structure. Hmm.

Sorry I knew that post would be confusing but I just needed to rant. I wanted B to repeat Year 10 as he had really struggled at his previous school and so near the beginning of last year was sent to a Pupil Referral Unit where he ended up staying for the whole of his Year 10. He got on reasonably well there but they did not have the staffing to do more than 3 basic GCSEs at foundation level plus some other non-academic qualifications. Although he struggles with school he is actually very bright and with the right support should be capable of getting a good number of good GCSE grades which will open up his prospects later whatever he chooses to do. He was ok about repeating the year at another school as they would not know him anyway and would not realize that he was repeating. We didn't stick to our first choice mainly because of the time frame. I knew that he would need to get settled in a new school immediately if he wanted to settle well and keep up so I was keen for him to start in Sept The previous SENCO had told us that we needed to get all of our reports done and gathered together before we even requested an assessment, which had delayed everything by several months already. Then we were pushed by several people independently to go for the new school rather than our first choice partly because we would be very unlikely to be given our first choice and would end up being sent elsewhere anyway. We felt it was making the best of a not-ideal situation in the very limited time that we had. Keep in mind that we went from an Asperger's diagnosis in March '13 to a finalized Statement at the end of Aug. I did not feel that it was wise to risk having to go for a Tribunal and then him have to move schools yet again. And at first I did not realize that there was even a problem with the new school apart from the distance. The new school opened in late Sept by which time the placement was named. It was soon after this, that we were told he would be attending classes with Year 9s. Unfortunately the mainstream secondary school where he has his classes had only last year started GCSE work in Year 9, which no one thought to inform us about and wasn't listed on their website when I researched the school while abroad. And it has only just this year changed the policy to a 3 year GCSE program. At the time of notifying parents of this there were only 2 students from the special school having classes in the mainstream school who would be affected by this and they neglected to notify us, and somehow the special school thought that we knew The other boy is in Year 9 anyway and so is unaffected really. So poor B is the only person for which this whole situation is a problem. Apparently a notice was sent out to parents in Nov. but we were missed out. Of course even if we had found out in Nov the process of requesting to move school at that point would have unsettled B even more and he still would be behind in the course work by the time he got to a new school if indeed we were allowed to change. So you can see that it is a complicated situation made more complex by the special school being brand new with the Head trying to set up a new school with delayed building works and still recruiting staff at the same time as integrating the secondary age students with the mainstream school. The head is really doing everything she can to help him succeed. It just seems that yet again he has had the bad luck of being caught in the middle of changes. I am doing everything I can to keep an open mind. Perhaps it will not be a bad thing that he will take so long over his course as his dyslexia makes his studies difficult and with so little support in the past he has not yet learned good study techniques or motivation. And if the Statements do change to cover older students then he could have support for A levels later on if he wishes to take them and perhaps even for university if he wishes. In the meantime the Head is setting up circumstances for him to be getting Sports Leadership qualifications and experience which would ordinarily only be open to 6th Formers. I hope that has made a modicum of sense. The whole situation certainly doesn't make much sense to us as parents but we have to trust that all will come right in the end. The main thing is that B is happy and has as much access to as much education as he wishes or needs to live a fulfilled life as an adult. Thanks for listening.

Cats! I like dogs too but prefer cats. My son's cat used to groom him and love on him so much when he was little, I know it helped him get through some very difficult times.

My goodness, I know what you mean about gingerism! My son is ginger (actually dark ginger) and has been teased in a good-natured way about this in the past. I am surprised though that adults would bully people about it although you have done a cool experiment to find out about it. Reminds me of a book we had to read when I was a teen called "Black Like Me" by John Howard Griffin. Personally I find it very attractive. :-)

Some advice please. My son was finally diagnosed a year ago with Asperger's and 2 years prior to that with dyslexia. It has been a long hard road but with being very organized and pushy we managed to get a Statement ready for him to start a new school in Sept. and were given almost everything we had asked for including him repeating Year 10 so that he would be able to get his GCSEs. I did not feel that repeating a year would be too traumatic as he has an end of Aug birthday anyway. It was a scramble to get everything in place for Sept especially since we were abroad for 3 weeks in Aug. and doing a great deal of the finalizing online. In the process, I was told that the school we had requested was full for Year 10 with a short waiting list but that a new special school for ASD was opening attached to a secondary school which was on the same site. So new that the building works were not scheduled to be finished until a couple of weeks after school started and we would have to start late. In fact they have only just been completed but are fantastic and the staff are absolutely brilliant, cooperative and I cannot say enough good things about it. We did know that, unfortunately, the school was going to be a long drive away-at least twice the travel time of the school we had chosen and 4 times the nearest school which we were told was likely to be the only other option for us. The down side of the nearest school was that GCSE work starts in Year 9 and he already knew quite a few students there who I am quite sure would have teased him about being in Year 9 classes instead of Year 11. So we chose the new school. What they did not tell us was that GCSEs in the new school also start in Year 9 and we did not find this out until we had already agreed to the Statement having this new school as the named school. OK, so we have been working with this and B has been doing very well except that he has objected strenuously to being in classes with Year 9s. I know that this is a pride thing and he feels "demoted" as age and Year is so important to him and he sees all his old friends getting ready to move on at the end of Year 11. He also is tired of travelling 45-50 min each way every day to get to school and not being able to have friends home after school since they all live so far away. As a result he has been refusing to go at all. Today I had a meeting with the most wonderful head teacher who works so hard to make sure the children are all happy and thriving and is trying to get everything organized that I suggest might help. And I think we might get him back to school. BUT during the meeting I realized that at this secondary school to which his school is attached, starting GCSEs in Year 9 means that they are studied over 3 full years with no option to take them early if you are ready. Which means that B has effectively been moved back 2 years not 1 and will finish GCSEs when he is 17 and will turn 18 just before the next school year. Which means that he will not be entitled to LEA funding to attend the school for 6th Form and A-levels. You cannot imagine the shock I felt when I was told this. Everything we have been working towards is liable to be undone when B realizes that he is going to have to go to school for 2 extra years to get the same qualifications. He hates school and I know that the idea that he will have to continue after 18 just to get A levels will mean he will not go at all. He is so bright and with the right support A levels should be easily attainable. I am so angry and feel like we have been duped into agreeing to this school rather than the one we wanted with the end result that he will not be able to continue on to get A levels with appropriate support if he chooses to do them. Is there anything that we can do about this? Or is it too late now?

Thank you. I will follow this up

Hi all, At long last all the reports are in and we have finally received a Proposed Statement. Our caseworker has also listened to my concerns about the length of time everything was taking and the delays that inevitably occur over school holidays and has managed to get the Panel review brought forward for 2 weeks time so that we can get something in place for Sept. Just barely gives us time to change anything if we need to but we may not need to. Just wanted to get an opinion from more experienced people regarding the wording for provision as it seems a little vague. There is no mention of precise hours for instance. My son is AS and above average intelligence but also dyslexic and achieving only average level academically. He is currently in a Pupil Referral Unit following exclusion. We are aiming for a new mainstream school that has an AS unit attached and has a very good reputation for support for special needs generally and AS in particular. We are also aiming to repeat Year 10 as he is an end of August birthday and has essentially missed his first year of GCSE studies with his current placement only set up to teach basic English Math and Science. Ideally what we would like is for him to be mainstream as he seems to flourish socially in this context, but with the necessary support to help him achieve. His Proposed Statement states in Part 3 for educational provision: Access to a broad, balanced and differentiated curriculum, with modifications which will ensure that tasks and activities are commensurate with his level of attainment and which take full account of his social, emotional and behavioural difficulties. Staff should be fully aware of his difficulties and able to provide a classroom/learning environment which minimises confusion and maximises his independence within the classroom. Consideration will be given to the following: An individualized program to develop his...........devised and monitored by the SENCo in conjunction with the Subject teacher and supported by a Teaching Assistant within small groups. This program will include...... At first this sounded really good to me giving us exactly what we had asked for. However, I am also a realist and know that if things are not spelled out clearly and precisely we may well not get what we need. Nothing in the proposed statement says anything about transport either but I am not clear if this is the time when we work that out. Opinions?

Just received a letter asking if we would like to nominate an Independent Parental Supporter. How important is it to have this sort of person and who should it be?

Hey Chickengirl, Just came across this post. I am not Aspie but my son is and only just diagnosed at 14. He is also above average IQ but not as high as you. Also dyslexic so really struggles with school. I was especially interested because you like chickens and so do I. I actually studied poultry nutrition at university years ago. Although I ended up changing fields we now have 3 hens included in our count of pets. So funny to watch and talk to. Ours are all hybrids. We have a Nera, a Bluebelle and a Golden. I also remember what it is like to be a teenager and in love with someone unattainable. Really aches inside. But something else will come along eventually and that ache fades. I'm sorry you feel like you have AS and anxiety and aren't believed. Hang in there. If you can find some information about AS to print out or an easy to read book like "Freaks, Geeks and Asperger's Syndrome" then leave it laying around for family to find and look at or even give it to them to see what they say. They might have their eyes opened when they realize that someone can come across as coping with society when they really aren't. Good luck.

Thank you Sally that is really helpful. I contact the SALT team some time ago to request an assessment and was told by the school that they had been contacted. But this was during a meeting and slightly off topic so I did not follow it well enough to know exactly what they are planning. I agree that if you make very specific requests it is much more successful and it is hugely helpful for me to know what requests to make. Thank you. I tend to do a lot of email contacts also. People can access it in their own time and follow it through. It also gives me a copy of the conversation and date as I keep copies of all of it! But if that is not successful then phone calls are much more prompt. I know the EP, very keen to help and was instrumental in finally getting the correct person to see and assess my son. She has given email and phone details and sent me a copy of school reports so I have already contacted her to let her know assessment is granted. I will now contact her with these specific requests as well. But they are on holiday also as she works term times only. Sigh.

Hey lisa hang in there and don't give up! Pester people. I sat back for too long and listened to people tell me what a naughty boy my son was when it was obvious to me that he wasn't naughty but was not coping. He was bullied for years and it was his fault because he "did not learn not to retaliate" when someone did or said something nasty to him. I just did not understand exactly why and was beaten down by years of struggle at home and with the school. But the length of time taken for assessments etc is ridiculous and the more we as parents get out there and complain the more it will be seen that CAMHS needs more specialist support and training. And bed32 how did they arrive at a diagnosis after a 30-45min "test"? My understanding is that the formal diagnosis is arrived at by using a questionnaire that lasts more like 2 hours as well as observing the child and any medical and/or school reports available. It certainly was in our case. Unfortunately I also found that when you ask for a specific assessment they will look only at that. So you will have to pester to keep them looking at different things to give you a "label" to use for explanation for your daughter. And don't be afraid to say to them that you need to tell her something. Personally I agree that being "over-imaginative" should not exclude her from being ASD. We don't always know what they are imagining. My son has a very vivid imagination which can be quite unrealistic socially. It can be very good escapism when life is a struggle. And I agree that it isn't necessarily the "doctors" you need to see to get the right help. I am a GP and, although had some vague suspicions regarding ASD and my son from a young age, was uneducated enough in that area that I discounted them for quite awhile. We also went the route of ADHD although I wasn't convinced, and were told no and nothing further was done. I pestered for years for dyslexia assessments and was told he did not have it until I went privately and had a more complete assessment and told actually yes he did. But of course I again had to pursue the next diagnosis when I realized that was not the complete answer. So don't give up. If you feel you are waiting too long or not getting enough feedback regarding assessment etc, contact someone and ask. Repeatedly. If the referral is through the SENCo at school, pester them and the person you were referred to. If the referral is through your GP find out who it is to and if that is the appropriate department and if you are waiting too long then contact PALS (patient liaison service)and tell them about it then keep phoning and talking and pestering. We asked for a referral specifically for ASD assessment. It took 7 months before it was done. When I hadn't heard anything after the first 3 weeks from referral I started phoning around to find out why. School holidays slowed things down but mostly people's lack of initiative. Eg. one department a few months down the line had done nothing because they did not have a contact detail for the SENCo at the school. They knew the school name, the child's name and were in the same town but lacked the initiative to pick up the phone to call the school to get the SENCo name or to use the computer to get it. So I gave it along with a bit of a push. Remind people you are there and need attention. As a part-time GP I actually appreciate this because it can be so easy to get caught up in the day-to-day grind and think someone is sorted out when they are not. Like the others will tell you, get a file going with ALL the paperwork in it regarding school reports, assessments-complete reports, any discussions you have with teachers etc. It will all paint a picture and help those assessing your dqughter's needs as well as helping you to remember things from years earlier when asked them during an assessment. And keep trying. Can't say it enough. Don't give up. There are lots of us out here to back you up and support you. Listen to what advice people can give you, choose what YOU can use and set aside the rest. Someone else will find it useful. You are not alone.

First rule out medical issues-infection, medication etc. Easily done with a visit to the GP and a sample of urine. Then make sure drinking enough during day but with cut off point such as dinnertime as suggested. Overly concentrated urine is a bit of an irritant if they are not drinking enough on a regular basis and so can cause dribbling. And oddly enough blackcurrant drinks can sometimes cause it. Also agree that "pull ups" are good for preventing all that washing but have to be approached carefully. We had bedwetting issues and leaking issues for a long time in our family in all our children. Night-time was simply down to very deep sleeping especially with the child who could throw up and sleep right through it! Alarms for that one worked a treat but we had to make it a bit of a private family joke to lighten the atmosphere. And sleepovers can also be dealt with by using desmopressin on the sleepover night. They can have these things called Desmotabs which melt on the tongue which can be used before bed but need to be prescribed by GP. Doesn't sound like his problem is not waking up but waking up in time. Does he go to the toilet during the night if he wakes up with wet pj's?

Yet another break when everything to do with the education system seems to shut down because the schools are on holiday. But did manage to contact my son's caseworker on one of her workdays. Got confirmation that he has been granted an assessment. So have now contacted the EP directly to let her know and give her a "heads up" to prepare. Will just keep hassling people until they want to get rid of me by giving me what I want. Shame that is the way it has to be.....

Have now contacted several people at the school to get all of this in writing as you suggest. In the process have come across various emails which I have saved over the past 4 years to and from the school about behaviour, bullying etc. Makes a very interesting read to see what my impression was then knowing what I know now....Hopefully enough people will either want to help him or will at least want to get rid of him that they will all respond. Interestingly, after what Sally just said about people moving on, I was just phoned by the consultant who gave the diagnosis in Feb. Apparently we were supposed to have had an appointment 2 days ago but never got anything to tell us this so of course we missed it. Now she has been offered redundancy at short notice from changes in the department and today is her last day. I really liked her too and so did my son. She has written a report ready for when the LA requests it and I told her about the possible school and unit we wanted. Hopefully she will get that added in to the report as a suggestion. But, dang it, it is a bit of a blow to hear she is going right now. And no time to have the appointment with her. Sounds like it would have just clarified things for us as a family and she will send to information on to us but it is a real shame to lose her if we need anything added. She was so indignant for him at the wasted years and inappropriate management of his behaviour. Would have been a real ally.

Is the school not required to keep a record of exclusions? I have not kept all of the notices that were sent home. Seemed pointless at the time. And the removing him from options as punishment was a comment made by the inclusion coordinator in a meeting which I think she realized was a mistake as soon as she said it. But I know that is why it was done and this was confirmed recently to me when the teacher for one of those options was the one who said she would let him come back to her class even if he wasn't coping with the others....If he was busy rolling himself up in the curtains while the others got on with their work she would just let him get on with it as long as he was not stopping the others from learning. Again I don't have in writing why he was removed from those classes because this happened in a meeting but I would think it was obvious from the records because his disruptive behaviour is listed as the reason he was taken out of classes. I will contact this person and ask her if she will comment about it. I have now told her that we are trying to change his school and it was interesting to see the change in attitude from sullen to much more helpful. Especially since they have worked so hard to keep him there. She just does not want to deal with him any more. On a more positive note I took him to see the possible new school today and for us both to meet the head of the AS unit. Amazing! It is exactly what I want!. Not so much my son because he is realizing he will be back to working hard and having homework :-) And we were there over break time so met quite a few of the boys and watched them interact. Very interesting to see a load of kids like mine! How in the world could we have been so blind?