sawjd

Hello Kathryn, Thanks for the post. I have to do a parent referral and give that a go first and our doctor (who we had seen tonight) said she will support a letter to the education authority and support the schools request for 8 hours support. So we are going for a statutory assessment and just wait and see what they say. I spoke to someone from IPSEA who said that they can't refuse a assessment on the grounds that he has not gone via a CAFs referral. Doctor tonight said that its a part of a childs safety team in Haringey. Its been a stressful few weeks, because our son has been refusing school on the days when they have to dress up. Its been odd days but now his logic is that because i cannot dress up then i don't go so if i cannot do a subject i don't go. We have told him this is not ok and that he has to go in. I have said he does not have to dress up but he does not believe me and then we have tears and tantrums and finger peeling off of banisters and i cannot stand him being upset so he has missed things like book day (where you have to come dressed up as your favourite book character). Assembly on one occasion where they did a mini play and he got so anxious he told us the night before he was not going in. We have had to miss about just three days in the past three weeks or so. Parents evening they told us he has been more problems with his behaviour in the playground where he has been pushing and shoving people to the point of causing tears. He does not understand about peoples personal space and does not read peoples emotions so he never knows when to stop until its too late. At least he is not biting people and throwing chairs in the classroom like the eldest one did at his age. Thanks for advice kathyrn, i wish i found and had access to this site sooner. best wishes love sandra

Hello everyone, Our 7 year old hates this stuff (movicol)land just wanted to know if any parents out there have been successful in getting their children to take this. I have tried to put this in fruit juices but he just has a couple of mouthfuls and thats it. He has been having bowel problems for a few years now and had abdominal pain and screaming fits with it. Been prescribed lactose, did not like that either. He cannot stand any fruit, does not like any veg, ..... i have tried to hide it, in mash, under gravy, in gravy, tried smoothies, all types of fruit. He refuses. He will eat baked beans...but can't keep having that a source of fibre. He loves cheese practically on anything. He still has to wear nappies at night as the bowel control is not great, he is more relaxed at home but i think he refuses to go properly at school. He jigs about a lot then gives in and goes to the toilet, othertimes he is not in control and says to me when he can feel like having a wee and other times, he says i didn't feel it. He is sometimes so unaware. He is struggling at school in litracy and we are due to put in for a statement of special needs. We are just waiting to speak to a inclusion officer. Then have an IEP again. Any advice on this subject would be greatly appreciated. Eldest son cannot stop going and is never solid.His bowels are really bad. He is 18 and i can't get him to see the doc over this. The sensory problems that our 7 year old has is more a problem than any sensory issues we had with the eldest one. He was much more violent and is still prone to temper tantrums. Just need a solution to this and then we can manage better. When do we get a break as parents ?. thank you for reading this. best wishes love sandra

Hello AnGee, Totally understand where you are coming from and what you are going through. I could have emailed this almost the same. What we have done is not see ILs as much, as they don't understand ms either, both conditions have brought blessings in disguise as relapse remitting ms is not so obvious to other people but mainly to the sufferer and with our sons (both ASD) i was blamed and still am for not encourging them to socialise yet MIL refuses to go out with us when i have offered. For instance to a support group for people (MIL her son has ms) with ms and she has not gone once, NOT EVEN ONCE to see her sons friends who are not in wheelchairs but walk with sticks. MIL herself is aloof at times. As for FIL, least said about him the better. Since we have not asked her to child mind our son anymore they have been better towards us, having said that a recent visit where Grandad was being antaganistic towards us has made me doubt further visits again. Its a bit long winded but if you want to email me privately i have my email details here i think anyway. Sorry new to this site and it will take me a while to get used to knowing where everything is. Like you, i always get the questions, why is he doing this and why is he doing that, FIL would ask me why is he walking on tip toe still, looks at me as if i have all the answers or is it my fault look that he gives me. They look at me as if i am in charge and ask me other stuff that should be personal to a husband and wife and OH (other half) won't say anything except when we get home he says to me just say nothing, they don't need to know. Things like finances, but i have started to use a phrase, its goes something like this, ' I know you are trying to be helpful and mean well, and thanks for your interest but we like to follow the professionals advice and the specialists thanks, when it comes to our childrens welfare. Should they repeat there advice to you or air their doubts to you say again, (using the broken record routine) and follow word for word and then expect a tut and a look and see how they change the conversation quickly. To me ,its a polite way of saying indirectly 'look its none of your business if you are not going to believe me i won't wast my breath explaining anymore as i need to save my energy and my time is better spent on my children than your attitude. If you don't speak about it, at some time they hate not knowing, they ask eventually and if you give them a chance to put you down they do it, so don't let them get a word in when they start, cut their intro. You do have to be strong, and when they are nice and meaningful they expect you to drop your guard, my adivce would be don't. be prepared. My side of the family are much more accepting as they have seen how bad the eldest was and seen how the young one behaves and initally i did have trouble in my side accepting that the second son could have ASD (how could i have two boys with this condition they were thinking)but i have showed reports to both my sister (my parents have passed on 10years this feb) and my OHs family and guess who believes me..... my side. Well i get the 'all children do that' and well you should do this. They think that all children with ASD are the same. Whats extra sad is that OH has two sisters who are teachers at a primary school and they have a autistic child and when the subject of autism comes up they turn to me and say ' the child that we look after , now he really is autistic'. He won't go to school. Guess what our 7 year old is refusing school but becuase they (the sisters) are not to witness it they don't believe it. Sad isn't it. They only want people with good health and no problematic children in their family. Well tough sxxt. Sorry for the language but AnGee, its their loss. Eventually they will realise it but it just takes time. It is difficult with your 18 year old, can i ask is it mild or moderate diffiulties he has ? .Our eldest is 18 and we are having problems with him today about going out with some workmates (prospects via resources for autism got him a job with a little help from me). Its confusing at times as you can be unsure if the teenager nature is taking over or autism. I have had to explain why i need to know the names (christan names) of his workmates in case anything happens to him then i know who he is with. Your typical teenager would understand why but refuse to give names and be just damned awkward but our son could not understand why i needed to know, i said to him 'in case anything happens to you', 'but mum', he says 'you can't stop it happening', 'no but i can ask the person who you were with, should anything happen to you. I tried to explain to him what insurance is, 'why do we have insurance, you know incase anything happens, well if something should happen i can find out through your friends'. 'Does it matter' he said,' i would be dead'. 'Anyway i am not a car so why are you talking about insurance'. (wish i could tape record him) Some conversations are absolutely priceless. Sorry for my ramblings about us but just wanted to show you, you are not alone. Good luck with the inlaws, remember whats the difference between in laws and outlaws ... Outlaws are wanted. Be careful, this phrase works both ways. love sandra

hello Jax, Sorry i just re read the last paragraph and obvioulsy things are not going well. Has anyone other than school been offering any advice on his lying and stealing at all ?. Are you being supported by your local authority enough ?. It must be difficult to cope with him doing this, how do other parents and children feel about him ?. I am getting the looks from parents all over again. The feeling of isolation we feel is diffiucult so moving to another school where they have a few more children on the spectrum might just be the thing where i could talk to other parents who are local and maybe he could make some friends. best wishes love sandra

Hello Jax, Thanks for the post. Does your school have a SENCO (special educational needs officer). Its good that your sons school were so open and honest enough to feel that they could comment. Our first son and his problems were not picked up despite my pleas. I am reluctant to go for what they call a CAFS referal. It is to do with informing all authorities and that they talk to one another and share info about your child possibly without you knowing. Your doctor and child mental health team and other professionals all get involved. Some say its a better way to handle things, but this is Haringey we are talking about, things they say have improved since the baby p case but they have a long way to go still. Me and OH had talked about changing schools. Don't think they do have his best interests at heart as they have implied i do not encourage him enough and i explained that we do encourage him and they think it my doing that he behaves the way he does. They are saying they do not have problems with him yet it is still an effort for him to get to do some work especially litracy and also he is pushing and shoving kids in the playground as he is not aware of other childrens space or boundaries yet the school have only just told us about a few incidents of this happening. If something had been said earlier then we could have sorted something, talked to our son instead of letting this go on, having said that we have tried to explain things before but its in his nature of this condition and his lack of understanding that makes him aggressive. The head teacher and myself have had a bit of a disagreement about the dressing up (fancy dress)and she thinks i should encourage him. To me its optional and should not be forced on to him. He does not feel left out as it does not bother him if he does not dress up. Tonight he is refusing to go in tomorrow as he cannot do the work and i am due to meet someone from the autism team (links with schools in the area) to discuss strategies on how to get him to perservere. Many thanks for taking time to reply. Hope that things are going well for you child. Best wishes sandra

Hello there, my name is sandra and we (me and other half) have two boys who are both on the autistic spectrum. Our seven year old has been diagnosed within the last year. I thought i would give you a bit of a personal profile. Firstly i have dyspraxia/dyslexia, OH (other half) has multiple schlerosis which is relapse remitting ms. Just wanted to say he walks with a stick and is not in a wheelchair. The eldest boy (18) was diagnosed back in 1999. I had a horrendous hell of a time with the first boy as no one believed what was going on and i had to tape record conversations with my son to prove his level of understanding and the arguements and abuse i got from him for instance things like, 'why i was going to safeways first instead of woolworths when i said i was going to woolworths first'. Things like shop window dummies would freak him out and he would walk well out of the way if we were approaching them. Even the artist dummies would make him cry and make him physically scared. Anyway eldest boys events were traumatic for me and the thought of going through the system again with our little one brings back sad memories. I have been thinking though, there is no point dwelling on these things and i have to find some strength to fight again for our little one. The trouble is this time the support at home is not there. OH parents don't want to believe little ones problems and both my parents i lost to cancer back in 2000. (i looked after mum weekends at home before she died) Its been rough, really rough the last ten years. Don't want support from social workers, i hope that maybe talking to people like yourselves who know and understand how difficult it is, is more valuable to me and because of the experience of dealing with authorities i could be of some assistance. I have waited ages (i am not a technically minded person)for a website like this with a forum as i found the NAS parent to parent line was limited. I found myself being on the ms society website has been and still is a brilliant forum as they don't just talk about ms, they talk about how the disability affects their daily lives and also whats in the news and share jokes. I have not scrolled down and had a proper look at this site but hope to find something similar but obviously mainly support for both what our little boy is going through. So far, our son has sensory integration problems, so just quickly i will run through a few things, he can't stand crisps, hates jumpers, goes through sessions of taking his trousers off as he sweats a lot, does not like to feel tacky i think even slightly. He can't stand the sound of the piano but at the same time he has possible glue ear again. Can't stand fluff in between his toes from socks. Likes the feeling of being stroked (particularly with something like a travelcard and stroked up and down the arm.(when he is anxious at times ie like being on a train). His main thing though is dressing up and cannot stand to dress up in fancy dress. These past few months (Christmas nativity in particular) he has been refusing to go in to school when they have a dressing up day, this can be for a book day (dress up as your favourite character) or play for school or a event for assembly. This is causing so much anxiety for him and we have tears and clinging to bannisters and throwing of things from him when the school have these occasions. The school is wanting to encourage him to take part and he doesn't want to. The school think i should encourage him to do so.We have tried outside the school when he has been invited to attend parties with fancy dress,our son says i will go but i won't dress up. The school have said recently i should tell him that he does not have to dress up. They don't know that even by telling him (which i have anyway) he won't believe me. It has to come from them. The logic he has has started to show itself more now and his inflexible thinking. The school don't seem to believe its autism and do not understand. Our son has problems in art, litracy and geography. It was also in music as the noise of the piano 'gave him a headache' but we mentioned this and they have put our son to the back of the class, so now no problem,he goes in on that particular day skipping. He struggles to write any short stories but is a bit of a genius (to me anyway)in maths and can work with computers and mobile phones straight away. Last night though at parents evening the teacher said he had been fighting at play times and he struggles with being in peoples faces and not knowing when enough is enough and not understanding when other children are getting upset. We are thinking of changing schools, but this school that he attends brought his initial difficulty to our attention in the first place, can't understand what seems to me to be a change of heart from them. Do i get them to log incidents, what do i do now, its been so long since i have done this. I know its not little ones fault but i have to fight for him just like i did our first son (he is from a different relationship) i thought this would be different this time with OH but some days it feels like i am on my own again and its no one fault, sorry if this email sounds like i am angry and sad but i think it a case of going through the emotions. I am grateful i have two lovely boys and i love them no matter what but just angry that its so damn hard to make people and authorities understand. Thank you for reading such a long email. Love sandra Just one more thing, they are wanting to do a CAFs referal but i am not keen as Haringey Social Services may be notified and in the past they have given not help but hassle to me. Given all the press in the last two years, i am not keen on having anything to do with them, they did not want to help after the eldest child was diagnosed.