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JJ's mum
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Everything posted by JJ's mum
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My boy was diagnosed at 5 with Aspergers Syndrome but thats only because the process took so long. He was referred shortly before his 4th birthday.
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Thanks for this, I had a read of a few pages on Amazon too- it looks good and very readable so I placed an order for it.
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Its great that your son recognises his strengths. My son is also great with instructions and his ability to spell words backwards blows my mind! Its always better to be more focused on your strengths than weaknesses so it sounds like your first chat went well. My boy was diagnosed around 6 weeks ago and ive still not found a way to tell him.
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Sounds bliss! Ive just got a degree last year and I think my computing department was full of Autistic people and most of them were among the most successful students/lecturers because of the ability to focus on a subject. I didnt read past page 18 of that book online because it just didnt ring true to what ive seen of the Autistic people that Ive met. I will be following this thread though because it is very relevant to me as im wondering how to tell my son as I dont want him to think im trying to say there is something "wrong" with him. Im not sure why im worried though as he is 100% certain he is perfect im not sure he would ever think otherwise!
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Sounds bliss!
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I was shocked reading some of this book on Amazon too as my son was diagnosed with Aspergers around 6 weeks ago aged 5 and I was thinking of telling him soon. It said the best time to tell a child is when they are saying they want a family, house, fast car etc..... Im not sure I agree that telling a child that they have Autism when they have (in my opinion) perfectly realistic expectations from life is the best thing. Ok so my son has poor coordination so maybe driving a fast car may be tricky but at the end of the day everyone dreams. If a person with autism has the capacity to dream of having a family, house and car then they surely also have the capacity to achieve their dream. Im sorry but im not going to be the one to shatter my sons dream, Im a dreamer myself and if he only dreams of a flat and a skoda ill be the one encouraging him to dream of a mansion and a porsche! Noone gets anywhere in life without dreams and ambitions. Call me thick but how can they suggest that Autism is a reason to stop dreaming. I fail to see how this isnt achievable for a person with Autism or in fact most disabilities. My husband has cerebral palsy and is a wheelchair user and we have our first child together on the way, the car ordered - albeit mobility! and a house. End of rant!!
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Ive been around on and off for around a year when we first realised my son had problems which we thought were Aspergers. Anyway he has now been diagnosed although he is currently doing well at school ( he is only 5 though) so I will probably be around a bit more looking for advice on various issues now we know for certain that he has Aspergers. It took around 10 months from start to finish to get a diagnosis for him which was a bit of a shock as we feel he hides it quite well to the outside world. He is very much more himself when he is at home with his family and more of his traits become obvious as he is more relaxed . Anyway Hi to everyone!
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My son was the same, he went ever so brave but it was too much for him and keeps talking about it several months later. That blood test was 100% necessary since it was believed he had meningitis. Thankfully he didnt but it was looking very like it so I think they did the right thing persevering to do it. Even the doc who referred him couldnt see the point of it so it is hard to see how it is worth it. It would just be reinforcing his current fear of hospitals.
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I didnt think you gave the impression that you though it was a reason not to have children, I am more concerned about the NHS and the way this nanny state is heading they may well do in the future. I have definitely decided against the genetic testing and will leave the decision to my son when he is older. Looking at symptoms of fragile x, I think that it is unlikely that he has it and am certain it would cause more trauma than the possible benefits of knowing.
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Thanks everyone for the replies. I think you are right in that the diagnosis of Aspergers isnt a negative thing. It has helped me a lot to know that it wasnt just me imagining his difficulties. The school say he is fine now and he is happy there although his behaviour after school is worse. He likes the routine and until he faces difficulties as I have been told he will particularly with English comprehension by the specialist speach therapist there is no need for intervention but I do feel the diagnosis is accurate. It is just that after being told that he didnt have the problems id described by the school and that it was just my parenting by my mum I was certain he wouldnt be given a diagnosis. I guess deep down it is a relief to know that there is a name for his difficulties. Thanks again everyone.
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Im not sure to be honest. I doubt this is the reason as all the family history is on my ex husbands side of the family. Having any more children with him is the last thing on my mind! I am however pregnant so maybe it has something to do with it. But if that is the reason then Id burst their bubble because my son is gorgeous. Id rather 10 of him than 2 like my daughter who is currently making it her lifes mission to answer back as much as possible. It has been noted that my son doesnt smile so maybe that has something to do with the test but I think whatever the reason is, Im refusing it especially since it is a big blood test and on same ward he was in when he had suspected meningitis and hence the blood test. I dont see a reason to avoid having children because of the possibility of aspergers. Im a believer that normal is overrated.
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Yes that is the one. The paediatrician didnt know if there were any benefits for him either, only to detemine a genetic link as there is evidence to suggest that Autism is inherited and in my sons case there is a history on his fathers side. My reservation with being diagnosed with a genetic condition it is possible, even if unlikely that he could be counselled about the risks of having children. I wouldnt want him to feel that it could lead to his children being affected and it is certainly irrelevant at age 5!
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My son had a 4 1/2 hour assessment today with the multi discplinary team or something like that. They have said he has aspergers syndrome and that is the teams expert diagosis. However they asked me whether I would like them to make the diagnosis formally to the school etc or whether I would just like his difficulties listed. They also asked if I would like a blood test for some genetic condition that has been linked with Autism. I was wondering if anyone had any advice as to what to do. My immediate reaction to the blood test is to refuse as son is petrified as he had one when the docs suspected meningitis a few months ago. I dont want to needlessly make his fears worse. Im not sure at all whether a diagnosis will help him. A year ago his difficulties were more apparent but he is doing well at school and the specialist teacher has said no intervention necessary. He is 5 and just started school in September but has no problems and can now accept that the timetable changes sometimes. Do you think a diagnosis helps?
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OK, who was it that didnt want to go to the cutty sark? http://news.bbc.co.uk/1/hi/england/london/6675381.stm Looks like it is gone forever :-(
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2 Questions: 1) is it agreed that the meet is on 14th July? If so: 2) Can I come? Been following the thread for some time since I couldnt make june due to house move and wedding, or 7th July as it the last day of honeymoon. 14th July should be ok but would have to bring new husband who is wheelchair user. Anyone know how accessible greenwich is by public transport. I know you can get there by boat from central london but not sure if all are accessible. I will prob bring my son (4) too as it is his kind of day out but leave my daughter behind.
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If you are talking about council housing or social housing then you may well be able to present your case for a 4 bedroom house. You as an adult are entitled to your own room, your girl would also be. Your boys would normally be required to share but since one has aspergers you could present your case for seperate rooms. I have a friend who recently did just this with our local council ( completed transfer ) and was given seperate rooms. Mention things like poor sleeping patterns, need for lights differing, noise,need for own space etc if they are causing difficulties. I was making a case for my 2 children who are opposite sex and both under 10 to have own rooms as they cannot share but thankfully managed to secure a mutual exchange where they will have seperate rooms - the third is tiny but will be ideal for my son who would sleep curled in a cardboard box if he could ( if the house im moving to is still ok since the ground shook in folkestone yesterday, we have far less chimneys and roofs that the day before!)
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Thanks, I planned to take a couple of pages of notes id taken. I didnt think of making a video. I might set camcorder up. My son is looking more autistic these past few weeks in his behaviour, so im sure if she is experienced as people say she is then she will be convinced. Im not sure if she will attempt to diagnose. I was under the impression that he would be seen by a multi discplinary team which I presume will be another time. Appointment not until end April, but will let you know how we get on.
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I just wanted to say that my paediatrican appointment has come through, after being referred by my health visitor. The lady we have apparently is knowledgeable with diagnosing ASD. Does anyone know if I need to do anything to prepare or what will be done at a first appointment? The letter from the hospital says nothing other than the date and time of the appointment.
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My husband doesnt understand at all. But then again, if son is on the spectrum ( which im pretty sure he is) then husband is more on the spectrum IFKWIM and therefore wouldnt know that his behaviour wasnt 'normal'. In fact compared to husband, my son is very normal. Know how you feel though, its pretty hard when you are trying to talk about your concerns and people just dont get it. I have a friend who Ive sat down with many a time and explained J's difficulties. Her daughter has a habit of opening our gate on her way past( which is my sons "job") and every time my son breaks down she proceeds to tell me how his tantrums "need sorting" and then to her daughter that it wasnt her fault she deliberately opened our gate and J is "in a bad mood". My husband finds it difficult to love full stop. He has said several times he doesnt know what love is and if someone was removed from his life he would carry on as normal. This has been demonstrated to be true since our break up, he rarely calls the kids and shows no emotion when his rare visits end. Im not suggesting he is. My husband is struggling to love our son ( and daughter for that matter) but he finds it hard to show love because he lacks empathy. I love my son more because of his "aspieness" because he is such a beautiful person and full of character. Its not easy <'>
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Forgot to say, I email my daughter and send her messages on Yahoo messenger and she loves it! I even ask her sometimes to tidy her room and she does! Might not work for an adolescent but you could always try.
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My children aged 7 and 5 both have the internet in their bedroom though I do have child safety software on there. If you have windows XP you can also change the ratings that the computer can display from the internet, by going to Contol Panel --> internet options --->content --> enable then set the content you would like your son to see. In addition, I use Net Nanny, and set up the email account for my daughter, and I have to admit I do have the odd peek in there to check up that no dodgy emails have been sent to her. So far we have had no problems and its been there 6 months, apart from the first software being over zealous and not allowing words like Sussex. If you dont give him an administrator account then you can also monitor which software is installed etc eg file sharing if you are concerned he may get you in trouble by downloading copyright movies etc. My daughter uses mainly sites that I have chosen for her and added to her favourites but I know you can block access to certain sites with net nanny and also restrict the sites to ones you are happy with. I would say go for it if your son is trustworthy. If he is a rigid follower of rules then write him a list such as "do not open emails unless you know who sent it", " never give out your name and address online". I know there is an ASD chat room, the address was published on here and it looked quite good though I am too old to join! You can always check the history of addresses visited from time to time when you manage to get a look. I dont really watch over my kids shoulders though, I just trust my daughter will be sensible and they have strict orders to call me if they see something rude. Frequently getting a virus is a sign something isnt quite right about the sites someone is using or the emails they are getting, but personally I like to trust my kids until proven otherwise despite many peoples negative reaction to my kids having the internet in their room.I dont however trust a lot of sites to protect their innocent eyes so thats the bit I watch out for.
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Wow a teacher that realises that education is far more than attainment targets and key stages! Read the article, just bought your book, joined the flexible education club! Ill let you know how we get on once we get the T-shirt! My son is only 4 but I believe that he will not always be best catered for in mainstream education, particularly secondary so I intend to do as your article suggests and tailor make his education. Ive already discussed this with the headteacher of the primary my son will attend in September and as he isnt a subscriber to ( so called) "inclusion" for all, he would be supportive of me part home schooling( but registered full time) during certain sessions as the need arises or anxiety necessitates. This will hopefully mean he will learn the necessary skills, and coupled with the self led "education" I plan to provide, I believe my son can have the best of all worlds. My daughter ( 6) , however, is thriving in the school system as many do and both of my children will be educated according to their needs. I have the odd problem like the time she was given 20 lines for forgetting he PE kit ( I had a word with the teacher and asked that I get the lines next time as im responsible for the laundry not my 6 yr old and she agreed!) which damaged her self esteem but she bounces back quickly with no long term effects. I dont believe mainstream secondarys nurture our children enough, they are after all still children at 11. I dont want my son shouted at by his surname as is practice in our local boys school, i wont have him bullied by kids or teachers, I wont have him given lines or punished for things he cannot help and I certainly wont tolerate him having his work criticised by the teachers if he is doing his best, i dont want him criticised as "failing" because he doesnt match up to this nanny states "Key stages". I know our kids need to learn to thrive in the real world but much of the treatment that is acceptable in schools would never be tolerated in the work place. If you are being bullied by 30 people at work and criticised frequently by your boss, id strongly recommend you get a new job. Looking forward to reading your book, Kevin, it sounds just what Ive been looking for!
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Thanks peppa for the link, I did the childbrain one and my son scored 94 mild pdd. My daughter scored 8 no pdd. Very useful site I thought, so thanks for sharing it.
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I went last year with my 2 for 5 days and yes there is a way for people with disabilities to jump the queues. Im not sure how you qualify though. I would say there is not enough to do for 5 days if you are jumping queues though. Id also recommend you book direct with disneyland paris, it was more than �300 cheaper for our holiday in August than booking with a travel agent. We stayed in the holiday inn and it was great, not far from the site and a free bus runs to the camp. A lot of people were complaining about their disney hotels not being too great when we went. A friend stayed in the mexican themed one and the standard was poor.
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Which was in a comment about selfishness and in no way linked to residential schools. Everyone is entitled to their own opinion. You singled me out implying I was saying people who send their kids to residential schools are thinking of the nights out which couldnt be further from what I was saying. Differing opinions are one thing, everyone is entitled to their opinion and everyones opinion is linked to their own experience. Im not saying residential schools are wrong. Im still a believer that there is no place like home though. I dont want to turn this thread into an argument about one comment so this is the last I will say on the matter. The poster obviously wants advice so Ill leave the thread free for those that want to give it. A mother can only go with her instincts.