flower23

Hi, My little boy is now in year 4 and was diagnosed with AS in August of 2008,, I had a similar experience with school and it took a long hard fight to get them to understand his needs, .. However even now , because he copes quite well in school I am sure they still feel I am complete nutter. But they dont witness how it is at home !! I had never heard of AS , until a friend of a friend who I was chatting with was talking about her little boy, and everything clicked into place,, I went to the doctor who refered us to paedetrician, who diagnosed him within the hour.. When i told the SENCO , she admitted she had noticed a bit of hand flapping in year one , but just put it down to over excitement, by year two his new teacher in parents evening mentioned that he hadnt done his test and just sat quietley and for love nor money was not going to do it.. and he wasnt even concerned about it.. this happened on another two occasions.. she also asked me about his vacant expression, that another teacher had also noticed.. (this was all before I knew anything about AS).. By year three , school refusal had started and tantrums at home and meltdowns for the silliest things,, far too many to mention.. I took him to school in his pjs and he lay feotal position on the headmasters chair crying, who told me that he thought it was a control thing over me..!!! Although I did tell him that this would happen time and time again unless he gets more help in his lessons.. I ended up taking in web address for him to look at and understand that it may look like he his coping at school, but isnt.. !! and was told the school didnt have the funds to keep his stress levels down!!! Even now we have good and bad days, because of his lack of social understandings and although they do have a few things in place for him, he can come home after a bad day and not mention it until we have had a full meltdown of not getting in the bath because there are bits in it, or he needed to go in first, or even sitting in the bathroom for an hour because he refused to get out.. until he blurts out that someone had called him a midget and he couldnt understand why... once it was out in the open,, he got out the bath and was fine.. Although i have not given up with school, i try to stay calm and not let the patronising comments get to me anymore!! the last one being after he had a lovely week on a residential trip with no problems, he went into school crying with me and there being too many people in the cloakroom,,, I was then informed that he was a different child when he was away and completely fine.!!!! Tears in my eyes again, I left him in the class room after being peeled off me again.. Dont let them get you down, and keep coming on here as I do for a rant,, !!

Most of the time he cant explain why he doesnt want to go certain places...He just doesnt,, he likes it at home!!! he will go to places he knows sometimes , like grandparents or friends sometimes.. but it all depends on the day.. even minutes before..!! If we HAVE to go somewhere , shops etc, It just takes longer as we usually have to go and look at some video games , and he has to know which shops and what we are going for,, and god forbid we make a detour...lol I am accused of lying quiet a bit lately... lol Even up until today he had been looking forward to a guitar lesson i had booked one on one,, and literally minutes before we got there it all went down hill in the car,, It wasnt really bad, but the tears came and he said he didnt want to go , he wanted to go home... Unfortunately , he wont do the pictures for me now, so its still managing jake on an hour to hour and minute to minute routine.. Like you mentioned,, preparing is essential, and my attitude now is no matter what happens , meltdown or anxiety is to stay calm and have patience and most of the time it can be dealt with.. I must admit the last nearly nine months has been a total rollercoaster, and family life has changed dramatically,, but we are all getting there,, and you defintely find out who your true friends are!!!

Hi Karen, Just thought I would do a quick update, and thanks for all the advice.... Well everything been up and down with school and two weeks ago had a terrible morning but eventually got him into school after lunch and he stayed and chatted to the head for an hour or so... I got back to pick him up,, and I think finally the head got it!!!! he had looked at the website I had given him and after chatting to him finally realised and saw Jake who has Aspergers and not controlling and naughty jake..!! We now have the Melatonin and must admit it has been a life saver,, and we now have jake in a great bed time routine,.. now he isnt soo tired, his attitude is a lot better, but we can now see the anxiety in Jake , but which can be controlled alot better.. We still have our off days and had to put him into the car on Friday, but other than that he is alot easier to talk to and meltdowns although are still there can be controlled alot quicker and easier.. As for school the I.E.P is set in place, which is great, but we still have some issues to cover.. even today he cam home and for the first time in a long time told me he hadnt had a good day, and spent two playtimes standing in the toilet on his own, because of silly playground games of hiding from him from some of the boys.. he takes it so much to heart.. bless him But anyway,,, it is so much happier for getting his sleep,, but I am under no illusions that this will cure his anxieties, especially when going to see his doctor at the hospital he was laying on the floor, legs wrapped round mine, tapping his head on my legs..lol (all over the fact there was no caffiene free coke,,, or more to the point , we hadnt told him where he was going and still isnt comfortable in places he doesnt like to go too..) xxxxx

Hi Karen, I have had a look and it seems the Social Inclusion Service is a team of teachers and professionals that work with schools in the area.. I am going to ring them today, to make sure who ever is going tomorrow has a good knowledge of Aspergers., its all very daunting..lol I just dont know what to expect, at the moment Jake isnt really getting any one to one at school, and the TA sit on a table with a group of children in his class just to help out.. and I dont really know how much time he should be having one to one? The head did mention the School Action plus and putting a IEP in place., so hopefully by the end of this week a should be clearer on whats happeneing.. One of the TA did do some visual cards we took home to try and encourage him to get to school, which worked for about two days,, lol,, then he didnt need the cards as he knows what time and what he should be doing before school , as he informed me..!!! The more I speak to my son each day, the more I am sure his issues are the need to fit it in, and the small things just mount up into one big meltdown, then he is fine again.. and I know school would like to put it down to control and tiredness , but he went lovely yesterday to school after another late night, (awaiting appointment for melatonin!!!) He even stopped taking his toast and juice money in for morining playtime, which I couldnt understand until I found out that his best friend didnt take any each day. I understand this could be a child without AS, but trying to convince he head is becoming really difficult , and the more I explain the more petty I sound...

Hi again, The Ep is ringing me tomorrow , (I am gathering she is different to the Inclusion Team who are in school with me on Thursday?) .. apologies I am still learning and having to find out myself how everything works.... I even took a website address for the head to look at, it was a very basic website , but explained about aspergers, I am hoping he will have looked at it, and then I will make sure tomorrow the Ep is aware about everything has happened so I have her back up too...

Thank Jsmum, This forum has been a life saver for my sanity just lately, and it is soooo sad that you have to fight for every bit of advice that you need, I have found a wonderful group that isnt so local , but is run by parents who have been through the same, their advice has been excellent .. and will not be taking him in his pj's again!! and yes I do have the pictures, which I will be taking on Thursday.. It is sad that he doesnt get invited to any birthday parties, and I had to watch him search through his school drawer to see if he had an invite to one party, and pass it off when he hadn't got one... I could have cried... As for more help in school, I really think I have a battle on , as I have already been told from the Head that there is no outside funding for this.. ? I am dreading Thursday but determined to stay strong!! I am just hoping that they dont make me feel like some paranoid mother !!! as ithas took since his dx to get out of feeling like that..

Hi, I can understand fully where you are coming from, We have just before Christmas received DLA , and my dx son can is a different child in school , but before and after can be a nightmare, .. The Dla asked for a report from school in which, he received one from the SENCO who taught him in reception!!! and one to say that they didnt see any problems at all in school only that he is slightly behind in some subjects.. I put loads of extras on the Dla form and even phoned the descion makers to speak and explain to them, I also asked them to get a report from the paedatrician who did the dx, which they did... One fight over!!! now I still have problems trying to convince school that he may need extra support there, as it can be terrible some mornings just getting him to school, so would appreciate any advice there!!! have got the inclusion team going in on Thursday and have had to chase the Ed P, so speaking to her tomorrow,.. I am too only just finding info out on here, thought I was being paranoid on how different they can be at school to home... We went through brushing his teeth, and the tears and sensory issues, Dont worry about the form , just put everything down... and it should be okay.. x

Hi,, And thank you to all you have responded to my plea...lol all advice is taken.. Since the dx , we have defintely started to work out , which are meltdowns and which are tantrums... Since the start of September , we have made him go into school and he has well understood before and after the meltdown, that this would happen.. and as explained after the first time he ended up in the headmasters office in his pj's in feotal position on a chair.. crying That it would definitely happen again and again,, ... As we all know , once the the meltdown has started , there is no stopping until he has decided to calm down.. These meltdowns, although are mainly regarding school, are also in the holidays or after perhaps staying at his nannys , which he loves and asks to do .. .. you can bet , its like waiting for a bomb to explode when he returns, last week it was because he didnt like what he was having for tea, and I ended up sitting on the stairs while he lay at the bottom crying,, .. Twenty minutes later, I asked if he wanted a drink with his dinner, he said yes and came and ate his dinner , as though none of it had happened.!!! My feeling is that it is the prentending to be normal (thank you Karen), although we are starting to notice and pick up on little bits he tells us or written in his diary every night,, for example ,, he has forgotten his P.E kit (it is always there), and his best friend wasnt doing P.E, or this week he had to have a dinner instead of packed lunch as he had lost his lunch box... (his best friend had changed to dinners).. Once or twice a week, someone has Accidently run into him on the playground, or knocked him,, but always accidently and they didnt mean it,, the last three birthday;s there was no invite, (even from his so called best friend)... A couple of months ago, after a major meltdown, in which the Pumpkin was thrown down the stairs, I left him with two pieces of paper, one to draw himself at home and the other at school. and to write how he felt.. The school one, - " I cried at school , because my friends were whipping me with snakes and the work is hard" and the home one . "I cry because of the Homework" This was the first I had heard about the incident and he had told the dinner lady who dealt with it,, meltdown over and off he went to school as though it had never happened.. I took the drawings into school, and the head teacher said they would sort it... I feel he needs more one to one support, but as the headmaster said " there is no outside funding to keep children calm whilst in school"!!! and they use Teaching Assistants is for the whole school, Ok ,,, so after my rambling again, lol... the basics are that , we are learning to cope at home and reduce anxieties as much as you can, but obviously need the support in school for him? dont I ,, or am I going round in circles....???

Hi, Feeling a little bit in dispair today, after another bad week before and after school.... My seven year old was diagnosed with Aspergers last July and since the start of term last September , things have rapidly gone downhill...and I am walking on eggshells every morning, to see whether he is going to have a meltdown before school... We seem to make a couple of days then its meltdown time,, this can be in the evening , morning or just because his cereal isnt Full to the Top!! lol.... The headmaster just doesnt get it,,!!! and today was the last straw when I insisted that it was in school where the problem must be, his anxiety levels must be sky high trying to fit in with no extra help... his work is fine and just under where it is supposed to be,, (which is good to say he misses a few lessons coming in late etc ) Because he has no special education needs the headmaster just cant understand it... and today told me " he felt that it might be a control thing from my Son.!!! and no matter what we will get to the bottom of this even if the answer is something we dont want to hear!!!!" My son has been taken in his pj's crying, i have had my hair pulled , kicked and things thrown at me ,, verbal and spitting and its getting worse.. The headmaster has informed the Inclusion Unit , but not chased it up,, this was before Christmas, and today I have finally arranged to speak to the Education Psychologist on Tuesday ... I don't know what to expect as I am new to all this, but I know it must be school.. has anyone got any advice..??? His behaviour is fine at school, and once he is there is enjoys it even after a meltdown... Any advice anyone!!! Please???