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Everything posted by joybed

  1. I totally understand your feelings. I have 3 children on the autistic spectrum and my bond with each of them is different. My oldest is 20 and he's the sweetest boy but he wasn't always like this he had severe behaviour problems and was very destructive. We now have fun together but have very little in common and conversation can be difficult, this makes me feel guilty. Piers is 12 ASD/ADHD he is funny and loving but also loud and aggressive, he's almost constantly angry. He tends to be very rough and I have fibromyalgia which causes me muscle and joint pain and chronic fatigue. His hugs hurt so I too stiffen up when anyone touches me but especially him as he's so rough. Lydia I have lots in common with as we both dance and love music and fashion. We tend to do a lot together due to dancing and I feel guilty as I don't spend so much time with the boys. I think being a parent is extremely difficult especially to a child with additional needs and I think you are being a little hard on yourself. I don't know how easy it would be if my children didn't have ASD because it's all I've ever known but at times life is rough. I rarely get enough sleep, I work full time and have health problems. We just have to do our best with what we have. Get support and help wherever you can and be kind to yourself your doing great.
  2. Hi my daughter Lydia doesn't have an official diagnosis but I am pretty sure she has aspergers, her two brothers are on the spectrum and she has a number of traits. She Has just had a massive meltdown, crying, sobbing, screaming throwing things (the dog and her brother both ran for cover). The reason for this she had put on a screen protector on her iPad and had got a few bubbles and dust under it. She is distraught because she has wasted money. I am aware she has hormonal changes going on right now but this was totally blown out of proportion. She has a few things going on right now,tap exam tomorrow, blood tests Tuesday to rule out juvenile arthritis and her twin brothers behaviour (ASD/ADHD) is shocking at the moment. How do you deal with this behaviour ignore it, cajole them. I have lived with ASD for 16 years but this is new to me.
  3. Hi I have a 10 year old with asperger syndrome and ADHD. The last year has been difficult. It all started when he was taken off his concerta as it was causing severe appetite suppression. He was severely underweight and suffering from failure to thrive so he was commenced on equasym 20mg. Since then he has become increasingly withdrawn, aggressive and has started self harming. Head banging, punching himself in the head etc. he is achieving very little at school he can only concentrate for a maximum of 20 minutes and then needs time out. He finds social relationships difficult and is the victim of bullying. School have suggested a specialist placement but there is no where to meet his needs in our area and his dad wants him to stay in mainstream school. Tonight I collected him from school he had had to go to after school club as I was working. An incident had occurred where he had lashed out at someone he was worried he would get in trouble. His sister tried to help by saying he had to control his temper he totally lost it and lashed out at her too so she hit him back (she is probably on the spectrum too). He became very upset and said his life wasn't worth living she regrettably said her life would be better if he was dead. When we came home something instinctively told me to go to his room when I did he was attempting to jump out of his window. He said he thought our life would be better without him. I have been through this with his older brother (also has ASD) but at an older age. I don't know what to do. I will call his consultant tomorrow but I am afraid to leave him alone. Any advice, I am on nights tomorrow night and really scared to leave him as his dad isn't as patient with him.
  4. Hi my 10 year old son has aspergers and ADHD and he is on concerta xl. He is very underweight for his age (3 stone 7 or. 49lbs) he is also very petite. His twin sister is 2 stone heavier and much taller. He has been taking this about 18 months and hasn't gained any weight since starting taking it. He was initially taking Ritalin 10mg twice a day and 5 mg in the evening. Just recently he has started complaining of headaches and stomach cramps. He has no appetite and makes excuses every meal time as to why he can't eat, the exception being breakfast when he eats reasonably well. He says the concerta makes him feel sad and on the odd occasions he hasn't taken it he is much happier. When he doesn't take it he is much louder and hyperactive but manageable for us. I am not sure how school would cope with him though and his school work has improved since taking it. The only real food he eats are eggs, cereal and brioche rolls this concerns me as he was lactose intolerant till he was 4. He hasn't seen his consultant in over a year and we can't get an appointment till the end of next month. I have rang the secretary numerous times to try to get an appointment and I can't get one. I have also been to my GP 3 times about this and the answer is always allow him to eat what he wants no matter how poor quality the food as long as it's high calorie. This concerns me as I want my children to eat nutritious foods. I no longer know what to do and am beginning to dislike giving him the tablets. He is susceptible to infection and looks very pale. Any advice.
  5. Hi I have fibromyalgia and follow the paleo diet. It is basically eating in a more natural way, if you can't kill it, dig it up or pick it you can't eat it (I don't kill my own food though LOL). The diet cuts out all grains, legumes, dairy and artificial additives/preservatives. I stick to a diet rich in meat fish vegetables some fruit nuts seeds and healthy fats like olive oil and coconut oil. It has reduced my pain levels significantly and I have much more energy not to mention glossy hair better skin and a better temperament. I have also lost weight despite a relatively high fat diet. My son has ASD/ADHD and was lactose intolerant as a small child. I think he still is as he gets abdominal pain all the time and is severely underweight. Good luck with your diet and if you need more info PM me.
  6. I am just jealous so many people live in north wales. We holiday frequently in Beddgelert and love the area. Welcome to the forum.
  7. Hi my son Piers has Aspergers and ADHD he takes Concerta 36mg once daily and melatonin 7.5mg at night. The concerta has worked really well on his hyperactivity, concentration and impulsivity but has drastically reduced his appetite. He eats well in the morning usually 2 bowls of cereal (we make sure he eats breakfast before his concerta) and is usually starving at bedtime so i know it is the concerta that effects his appetite. He has packed lunch as he wasnt eating any of the school lunches. To begin with he ate well at packed lunch but for the past 2 weeks he has been bringing his lunch box home untouched. He states he doesn,t like sandwiches and he is being put of his food by other children being silly (usual child things like making trumpy noises eating sloppily etc) and this makes him feel sick. At home he is reluctant to eat lunch but we encourage him by making sure he has no distractions sits down to eat etc. His evening meal is very hit and miss if it is pasta he will eat everything other things he won,t touch then he is hungry later and demanding sweets. His twin sister is consatntly hungry and will graze all night so I feel like all I do is prepare food with 3 packed lunches and the twins demands this is getting tiring. He is also becoming increasingly fussy. Previously he ate anything his favourite foods being chilli, olives, squid and snails, but now the list of foods he won,t eat is getting longer. He hates fast food (not a bad thing) and is easily put of his food. If one of his siblings coughs or burps at the table he then refuses to eat. He naturally refuses dairy products as he was severly lactose intolerant until he was 4 and he instinctively knows if he eats too much it gives him a poorly tummy although he does have some dairy in his diet. He has lots of energy (perhaps too much) is healthy but at 9 years old he only weighs 3stone4 his consultant knows this and says that as he hasn,t lost any weight she wants to keep him on the concerta as it works for him, I agree with this but I am concerned about his weight. His weight is on the 2nd centile and height between the 2nd and 9th centile. When he was born he was on the 75th so this is a huge drop. Can anyone who has dealt with this give me any advice. My husband is notoriously bad at dealing with these situations and comes in heavy handed, he told him last night that if he doesn,t eat he will take him to the hospital and leave him there, this as you can imagine caused a massive row between us. My oldest boy is also ASD and although he is a fussy eater he has a good range of foods and will eat every bit on his plate to the point the plate looks clean when he has finished. Sorry this is so long.
  8. Hi my son Piers has Asperger syndrome and ADHD. He takes concerta 36mg in the morning, this has helped his concentration and educationally he is doing very well at school, he repeated reception and has remained a school year behind his twin sister. This year at school he has improved so much with his reading and numeracy skills so school view this year as a major success however socially it has been a disaster. He is socially immature and very small for his age he would prefer to play with teddy bears and is terrified of ball games, most of the boys in his class are football mad so this singles him out immediately. He is often called a baby and treated like an idiot this really upsets him. The one friendship he has is with a really manipulative child who demands toys, sweets etc in exchange for friendship Piers hands these over as he is so desperate for a friend. I have spoken to school about this and they have started a socially speaking intervention with Piers. He has had numerous changes to his LSA the latest one due to the fact that his LSAs son was bullying him, after i complained they have now employed someone who will be with him until the end of year 6. His teacher is not special needs friendly (despite being the SENCO)and her answer is always well he is fine at school and implies we must be doing something wrong at home. He just about holds it together at school but then we have terrible meltdowns at home and I have to cajole him all the way to school. He then holds it all together again at school. I have been through the same thing with my oldest son but he was 12 when this started and really don,t want to have Piers go through the hell Marcus did. We are also having problems with aggression he is verbally and physically aggressive towards his siblings and myself afterwards he is full of remorse and says things like nobody loves me beacuse I am a naughty boy why don,t you put me up for adoption (he has a friend who is adopted so knows all about this). We obviously reassure him and tell him we love him a lot and don,t want to give him away but he struggles to believe this. He has never been given this impression by myself his sister maybe but not us. He says the most horrible things ("I am going to stab you in the eye with this fork", "I will snap your neck" and at these times I really believe he could do it. I make sure knives are out of reach and watch him like a hawk. He only has 4 more weeks in this teachers class and his teacher for next year is much more child friendly but also very quiet and I am afraid she may not be firm enough with him. I am not sure his medication is right for him it worked really well initially but now we are seeing increasingly aggressive and hyperactive behaviour he also barely eats anything, he only weighs 3 stone 4 at age 9 this is another concern. Any advice, I hate seeing him like this and it is affecting my other childrens lives also.
  9. Hi my name is Joy some of you might remember me I used to hang out here a lot but life gets busy and I havn,t posted for a while. I thought I would just do a quick post to update you all. I have 3 children Marcus 17 has ASD and you might remember had lots of problems in mainstream comprehensive when he was about 12 with bullying, not able to cope with school life and self harm. After getting the right level of support for him and transport via taxi he left school last year with 10 GCSEs and is now in mainstream 6th form studying interactive media and ICT, he is on line to get a good pass and is planning on staying there at least another year. The school has an ASD unit which gives Marcus support and also life skills/ work experience. We are so proud of him, he still needs lots of support and encouragement but is doing so much better than we ever expected and thankfully not self harmed for a while. For those of you going through tough times fight and be strong it is so worth it. Piers is now 9 and has a diagnosis of Aspergers and ADHD, he currently takes Concerta 36mg. He is within a mainstream school with 18 hours support. He is a funny charismatic little boy who educationally is doing very well since starting meds. However he is also an aggressive little monkey who is really struggling at school at the moment (I have writtten a seperate post regarding this asking for advice). Lydia is Piers twin sister she probably has ADD or aspergers or both. She has virtually no concentration skills at all (unless it involves dancing, the big bang theory or how I met your mother). She has a good circle of friends now although she has to work hard at maintaining these friendships and can often be selfish. We have to constantly battle with her to get her to focus on homework etc and she is so forgetfull. Her current teacher acknowledges her concentration issue but educationally and socially she is doing well so adopting a watch and wait policy. She has dance lessons 6 hours a week which she loves and loves performing on stage, this has increased her confidence no end and she is no longer the timid little girl she once was. Miles (the hubby) is still the same, still not coping with the kids still prefers to do his own thing, he loves us in his own way but just leaves me to deal with it all. Finally we come to me I am pleased to say i no longer suffer from depression. I have found a love for exercise (running, cross fit and bodybuilding) and have lost 3 stone. I still work fulltime and hardly get any sleep but the exercise helps me cope. On a not so positive note I have been diagnosed with Fibromyalgia and a small benign brain tumour but I dont let either of these things stop me i don,t have time. I wont stay away so long next time glad to be back.
  10. Hi everybody i am doing the great yorkshire run on the 9th october on behalf of the national autistic society. I am doing this A, because 2 of my children have ASD, B, The NAS have always been a great source of support for me and my family and C, crazily I love running. The race is 10k or 6.2 miles in Sheffield the training has gone well and i am looking forward to the event. If anyone would like to sponsor me I have a just giving page, www.justgiving.com/joy-bedford Thankyou in advance of any sponsors.
  11. joybed


    I took my 15 year old who was then 12 to a Take That concert a few years ago he was excited about going and kept nagging me to take him. We got off to a bad start as we went into the venue only to find we couldn,t leave again he had had no food and is very faddy and didn,t like any of the food on offer. The minute it started i regretted taking him he sat really quiet all the way through it, looked very bored and showed no excitement at all. On reflection he was overwhelmed by the whole experience and blocked it out so he could cope. He said afterwards he enjoyed it but didn,t ask to go again the next time they toured. He doesn,t really like take that though and maybe the sight of his hysterical mother was what was too much for him. He also went to see Fame Academy all together a much smaller thing when he was about 7 and asked to leave at the interval he sat all the way through with his hands over his ears.
  12. Piers recieved diagnosis of ADHD today and starts treatment tomorrow with ritalin. Although the diagnosis was expected i am still realing from it. Really scared about riatalin and also it just doesn,t seem fair that my beautiful boy has to deal with so much at his young age. He has taken it very well and is glad there is a reason why he behaves the way he does as he always gets upset after an outburst. Hope treatment brings positive changes. Sure i will have lots more questions once i get my head around it all.
  13. Hi JS mum good to hear from you. Hows evrything going like i said havn,t been on here for ages and likewise was wondering how you were. Its interesting what you say about school. Piers LSA will often write in his home school diary that he has had a good day and done fantastic pieces of work but then he comes home and can,t seem to read to a word to us and he still cannot write his surname. He has repeated reception but is still far behind lots of the others in the class. Parents evening was a real eye opener, his teacher said they had no issues with poor concentration but then in the next breath said she sits him by her feet at carpet time to keeep him on track. He has 18 hours support and his LSA is wonderful and has really taken to him and him to her. He seems to enjoy school and i think the routine is good for him. At home we have lots of behavioural issues Lydia has a friend round to play every night (little girl next door)but unfortunately piers has a real problem with her he thinks he can control who comes into the house and when, he often viciously attacks both his sister and her friend. He and Marcus continue to have a love hate relationship M will sometimes allow him into his room but then other times will get upset when he tries to go in. Teenage thing i suppose.excited and nervous at the same time about tomorrow will let you know the verdict. Completed race for life 5K in 31 mins 11 secs not bad to say i had been ill.
  14. Hi all i havn,t been around for a while as life in general is very busy. Marcus is doing Ok at school at the moment. Currently year 10, teenager in a big way mostly, grunts and hiding in his room these days. He is however fairly calm the odd outburst but think puberty didn,t like him hopefully the old hormones are letting us all have soon peace. Piers is the big problem at the moment he is a little terror, completely hyperactive, no sense of danger and continues to be agressive. We have an appointment at the externalising behaviour clinic on Tuesday to get get results of second ADHD assessment. The problem is he is quite calm at school and hardly ever causes them any bother. However he had a major meltdown and punched me during Marcus consultants appointment (they have the same cons) and the day after the hospital phoned to see if i wanted to accept an earlier appointment,(seems too much of a coincidence to me) have mixed feelings about dual diagnosis i am sure you know what I mean. Lydia is doing better, increasing in confidence daily now little miss busy bee. She now dances, swims, does gymnastics cheerleading, beavers and brownies. We are never in. The boys cope Ok with all this surprisingly. Hubby still not coping well with it all and is infact still in denial with occasional periods of woe is me. I cope better as I am now doing a lot of exercise, and i run 3 times a week, the difference is amazing and i have lost some weight WOO HOO. I am doing the race for life tomorrow (first event for me)and I am doing a 10k for the NAS in October. In a reasonably good place at the moment. Wanted to post something positve for a change and thank everybody for their help when times have been hard. Hope you are well at the moment. Will let you know how the race went.
  15. Hi just wondered how you all would deal with this. Piers behaviour is becoming worse every day of the holidays. I am truly worn out by it. He and Lydia,s relationship is detriorating rapidly and I need to go shopping but he is reluctant to get dressed yet again and i am not thrilled at the prospect of a screaming child in Tesco,s. Piers has aspergers and probably ADHD also. HE has numerous sensitivity issues he has always had an issue with socks and shoes but this has now progressed to clothes also. He is very small and needs trousers with an adjustable waist but cannot stand the elastic because i need to pull it in in so much. He will only wear clothes that have Ben 10 on them or another character he is in to. I don,t tolerate this and encourage him to wear other things but it is literally a fight to get him dressed. He prefers to remain naked but then tantrums he is cold and this is obviously not an option. He is very controlling in the way he plays he insists his toys are perfectly straight and screams for them to be perfect, he cannot explain what perfect is so screams until I hit on the right thing. His speech is good but he cannot find the words to explain himself. He becomes easily frustrated and becomes destructive if he cannot do something. His DS has been removed as he tried to break it and we had to stop a Wii game after 1 minute yesterday because he was having such a tantrum. Life is one huge tantrum. To top it off Lydia is winding him up all the time and all they do is fight. At The moment I am finding it hard to deal with the tantrum that has just occured as i felt close to losing my temper. He cries all the time, is constantly attached to my leg, he is now saying nobody in the family likes him and will not be reassured. He is also refusing most foods. He has a cold and a nasty cough and obviously the school rouitne isn,t there also. We are trying to get back to mnormal after the mayhem of christmas. DH is now back at work and i am at home alone with the kids. Marcus has gone to his Nannas as he cannot cope with the noise Piers makes. The house is chaos and i cannot see a way past it. It is soul destroying to see a 6 year old so frustrated deeply unhappy.
  16. Meeting went well on Friday. School have said that academically they have no concerns but have finally agreed thay cannot meet his social needs. They agreed when I said that mainstream couldn,t meet his social and self care needs and said they cannot imagine him in mainstream college. Connexions also said i need to be looking into future long term care for him as an adult as they can anticipate huge problems in early adult life. Part of me is relieved they have finally admitted this but the other part is angry it has taken this long. It has been obvious to me he needs more structured social teaching for the past 3 years why have they continued to fight me. How can they suddenly go from saying he is brilliant and coping to needing long term support as an adult? . We have agreed he will continue with year 11 at his current school on the level of support (or maybe a slight increase) he has at the moment. However they are looking into specialist ASD colleges for year 12 and 13. I have an appointment to look around the local deaf college which has a large number of ASD students and offers a good support package on Wednesday and connexions are looking into the school I wanted him to go to in year 8. Fairly positive meeting but just waiting to see what will happen as he needs to have an assessement by the local mainstream college to see if they can meet his needs, if they cannot then the LEA will agree funding for special college. This won,t happen until next autumn. Have a further review meeting in June to discuss it all again arrange appointments etc. My worry is that Marcus will go for the assessment appear as if he would cope and they say he is able. Marcus tends to say he is OK and not tell the truth at these kinds of things, not his fault he just gets really stressed and wants it over so he tells them what he thinks they want to hear to get it over with. Hopefully my views will be taken into consideration. Thanks for your wonderful advice again. Will keep you posted on the outcome. I will continue to fight for him as i have for the last 10 years and with all the help on her we will succeed thankyou again.
  17. joybed


    Hi again. I love christamas always have always will, i love giving gifts and all the anticipation of christmas eve and the dinner and everything, you really can,t beat it but this year i am really stuck for gifts for the boys. Marcus i am kind of all right with as there are computer type things he wants/needs. Lydia I am done for and could buy again 10 times over she is easy. The problem is Piers, what do you buy a child with no imagination , who can break anything in 2 seconds flat. His interests are Ben 10, Dinosaurs, scooby doo, power ranges etc. He has most Ben 10 stuff but most of it is plastic rubbish which is gimicky, has lots of fiddly bits and expensive. Also he says he really wants them but then plays very little with these things. He isn,t a reader becomes easily frustrated with computer games and has little atttention span he also has learning difficulties. One thought was a cd player and story CDs as he likes bedtime stories obviously this wouldn,t replace time with us reading to him. I refuse to let them have TVs in there room they sleep little as it is. Any ideas. He shows no interest in ASD type visual toys either. There is a chad valley dino mountain I have seen that looks OK anyone seen this is it OK for our kids.
  18. Hi I havn,t read other people replies as i am on my way out to DS1 annual review but wanted to reply. Marcus was 8 when i gave birth to twins. Marcus has ASD and dyspraxia. We did lots of preparation work with him prior to the twins arrival told him the truth about how life would change, what would happen when I went into hospital, discussed the possibility of my needing to stay in hospital for a period of time if i had a caesarian or the twins were preterm etc. We tried really hard to keep his routine the same when they were 1st born and my friends were great helping take him to school etc as were all my family. Obviously life changed, his routine changed a little, he was used to coming home from school doing his homework and then having tea and then time on the PS2, there were times when this couldn,t happen because I was busy feeding or one or both of the babes was unsettled, there were odd times we were getting fish and chips at 21.00 hours. Marcus coped with all this, helped when he wanted to by passing nappies, switching of breastpump etc but on the whole took very little interest in the babies. This changed when they became mobile and could get his things, Marcus became upset if they touched his things and would shout at them. He was never physically aggressive but i watched closely. This has got worse as they have got older. They all argue a lot. At times Marcus will try to play with his siblings but often gets it wrong, it either goes to far in play fight and someone gets hurt(usually Marcus who is 5ft7 and stockily built, little Piers who is in age 3-4 clothes can knock ten bells out of him) or he invades there personal space and generally annoys them. Piers was diagnosed with ASD at 5 and although different to M in many ways they have similarities and clash horribly. Also M is a very aloof ASD who is intensely private and P is a very loud, boistrous in your face ASD, this makes for an interesting family life as you can imagine. Throw into this Lydia who also has ASD traits (although undiagnosed) and it is even more lively. Lydia finds her brothers difficult she is often embarassed by her brothers behaviour and is very blunt with them telling them when there behaviour is innapropriate or if they smell (see post on lack of personal hygiene). On the whole I cope well now I don,t know any better and although at times i think why does everything have to be so hard on the whole you just get on with it. DH doesn,t cope as well but is getting better, his world fell apart when Piers was diagnosed and he suffered from depression at this time but is slowly coming to terms with it all. We thought long and hard about having more children and were reassured ASD wasn,t genetic and as my husband isn,t Ms dad we would be OK, obviously that isn,t the case and they now say that the ASD probably is genetic and travelling down my family line. For all this I wanted another baby DH didn,t and I had womens surgery last year and the docs recommended I be sterilised. I agreed partly due to this and partly because at that time we were going through the diagnosis with Piers and Marcus was having a very tough time at school. I now deeply regret this decision. All of my children are extremely hard work but I love them all and try to do my best by them. The only regret i have is that none of them get enough one to one time and I often meet myself coming back IYSWIM. Life is different for us and I do sometimes envy friends who can just do things on the spur of the moment without a seconds thought but on the whole I wouldn,t change a thing, they are unique people who all have good and bad sides like everyone.
  19. Hi all as some of you will remember Marcus whos is 14 and in year 10 has had numerous problems in his mainstream comprehensive school. This was really bad in year 8 when we had a period of home ed/ flexi schooling, severe anxiety, self harm etc etc. He has recently been coping Ok at school, he has 25 hours support, a taxi to and from school and is ticking along. This is the problem he is just OK, he still has social difficulties with the other pupils, general teasing, name calling saying they are going to call the house and speak to me saying he has been bad at school etc. Marcus is a very private person and likes to keep school and home very seperate he rarely tells me what happens and if he does it is usually after he has built himself into such a frenzy I have difficulty extracting any rationale snippets that could help him or me. From what the teachers reports say about him he is just achieving in subjects but in others he is being very diruptive, not achieving anything and they are using the nintendo Wii as a form of bribery (you do 30 minutes gym work and we will let you play on the Wii for 30 minutes). He has had a meeting with the connexions people (what planet are they on) and they have discussed future careers he apparently said he wanted to design or try out computer games connexions have said this is a much sought after position and maybe he should consider being an IT trainer, he has no social ability, cannot answer the telephone appropriately, and does everything on his terms. In his last review he had said to connexions he wanted to be a racing driver and her and the SENCO were laughing saying well everyone should have a dream he is also severely dyspraxic and has no road safety awareness. When I pointed this out i was told I was being negative and it was all too far in the future to worry about it now. When we had all the problems in year 8 I found him a lovely school for communication disorders who were happy to take him but the LEA said he was too bright, now his predicted GCSE results are ranging from a C (in IT) to a G in most other subjects. I am not too upset by this as he I don,t think he could cope socially in a work environment anyway. He is very bound by routine, tries to manipulate others to allowing him to have his own way, refuses to join in with any family events and makes no allowance for others needs. Yes I understand this is his condition but i don,t think school do. He is also still very destructive has no ability to rationalize his actions and no awareness of consequences or danger. The other day he tried to encouraged his brother (also ASD) to ride a tonker truck down the stairs and thought this was funny thank god I overheard what was happening. He doesn,t want to go to further education, I doubt in the current climate he will find a job and I work so cannot be here all the time I wouldn,t dare leave him alone for more han a few minutes as he would probably flood the house or burn it down he has already tried to flood the house on numerous occasions not to mention ripping up carpets, scratching windows glass, breaking his siblings and his own things. What does the future hold. School are happy with him as he doesn,t cause them a problem, he now happily goes to school with his taxi driver and no longer makes a fuss so on the surface everything rosy. He is 15 next month so running out of time. Any advice. I have written all my concerns o the school and I am about to speak to the ASD team now. What can i reasoanbly ask for. I am sorry if this sounds very negative I love my son very much but he isn,t the easiest child to live with and at times even my patience wears very thin. Very worried about this meeting and DH can,t go with me.
  20. Thankyou for all the advice. We don,t have a problem getting him into the bath he goes in every night, it is part of his routine and he is happy with this but i don,t think he is washing properly and I think it is a hormonal thing. His hair is much greasier just lately and really needs washing every night this is not part of his routine yet and is taking soem sinking in but we are getting there. Initially he was just dunking his head under the water and though that would do, then there was the question of which bottle of various concoctions to use, he would get used to using something and one of the other kids would empty the entire botlle in the bath so than he would be confused and again not know what to do. I have remedied this by preparing the area before he goes in there, showing what to use where. I recently found out he was using shampoo as a body wash for example. I have been dropping questions about his bathing into general conversations so it doesn,t look like I am nagging him and by a process of elimination and trial and error I am teaching him how to wash. He will not let me in the bathroom at all, he has gone from parading around naked in front of a window for all to see, to not wanting anybody to see any flesh at all, he is very embarassed when Piers walks into his room naked but strangley happily comes into the bathroom when I am naked and can,t understamd why I ask him to leave. I suppose like everything else it is slow progress and you need to keep on chipping away. He will happily use spray deodorants but can,t cope with roll ons however he forgets and often I am too busy in the morning getting tham all out the door and forget to remind him, also he tends to use too much and nearly kills everyone. He lsitens to his little sister and she is a perfume addict so maybe she can teach him. I am dreading it when he starts needing to shave how do you teach that, i have already decided an electric one is the only thing i would dare let him use. Marcus is very resistant to a visual timetable of any description he says they are for babies and he is too old for such things, if i write a list or symbols of any decription he throws a wobbly unfortunately these would really benefit him.
  21. My 6 year old is exactly the same although he is improving. When he was 5 I was really concerned he would be run over as he had no awareness at all and would just run into the road etc. He also doesn,t like to hold hands says it hurts him and refuses to walk with a wrist strap on, he is aware enough to know he is a bit old for that. He also got lost frequently. We have had to be fairly graphic with him. I did the early bird plus course and they said don,t beat around the bush tell it how it is, explain he will die if a car runs him over and draw this happening. So it might seem gruesome but I drew a drawing (simple stick men I can,t draw) of Piers being hit by a car, laid in the road with blood coming from his head, an ambulance in the background and me and his sister crying. It seemed to work and he now walks nicely occasionally he forgets and runs off and he is difficult to catch but it is less frequent. This morning we had to walk to school on the road as there is still loads of snow here and Piers explained to me that we shouldnt really be doing this and if a car ran over him it would squish his heart and he would be dead. Some people may think this too much for a child his age but beating about the bush doesn,t work either. Another problem we had was him taking of his seatbelt in the car, the NAS suggested we wait until he did this and then in a controlled environment (no traffic, reduced speed etc) I slam the brakes on), this also worked as he slipped onto the floor and was really shocked, he now happily wears his seatbelt. You know your child and whether he can take this approach. I also think this improves with age and routine Piers runs more in environments he is unfamiliar with such as on holiday which is precisely when we need him not to do a runner. The route to school now holds no surprises for him so he walks well until he is distracted by someone or something. Hope this helps.
  22. Hi Marcus is 14 and has ASD he is in mainstream school but very socially unaware and has no interest in any kind of social interaction. He has a severe lack of personal hygiene, he has a bath every night which we have to prompt or he wouldn,t do it, he has never been good on washing his hands after toileting, he still constantly has his hands down his pants. Even though he has bath every night I am not convinced he is washing correctly and he will not let me into the bathroom. Immediately after the bath he still smells of stale sweat and the morning after it knocks you over, his hair is also very greasy, I avoid his room at all cost as it smells like a barn. I ensure he changes his clothes frequently and bedding is change weekly but the smell knocks you over when you open the washing basket. Both myself, DH and my parents have tried to tactfully and very directly tell him that he smells but it doesn,t bother him. We have supplied deodorant of every type imaginable but he needs constant prompting to use it. Nobody wants to get close to him (maybe thats why he does it). He also never brushes his teeth. My mum has even mentioned it to her GP he said it was an age thing. I am sure part of it is age but the other boys his age are all well turned out and smell OK. Any ideas before we all resort to a nose peg. I know this topic has been done before but it really is a problem for the whole family.
  23. Hi Paula i too am sending you huge hugs. I also have been in your situation with my 14 year old, fortunately at the moment he is relatively calm but i spend every day waiting for it all to kick off again. It is an incredibly difficult situation we are all in and unfortuantley there is little support out there. I too hated the behaviours Marcus displayed got fed up of being punched and kicked, was upset for my other children that they should have to deal with all this at there young age, and argued so much with my husband we were on the brink of divorce. I am fortunate in the respect that my parents give me repsite but this comes at a price as there way of keeping him calm is to let him have all his own way and that can,t happen at home with 2 other children who also have there own issues. I used to spemd my life waiting for the weekends and a break but then felt very gulty about feeling this way. Marcus too used to say home wasn,t the place for him and he hated us. I got by by remembering it was his behaviours I hated and not him but it is very difficult to be patient time and time again with someone who doesn,t accept your help. I also remember needing to go into hospital and trying to find a social worker who would understand i needed help with the children only to be told i wasn,t a priority, so 5 days after major surgery I was dealing with a huge meltdown from a very strong 5 year old with aspergers. I hope things get better and someone listens to you but we are here and truly do understand.
  24. joybed


    Hi thankyou all for your replies. Things have got a little easier on the homework front with consistency and a good routine. Maybe it was just the transition of getting back into the school routine. Don,t get me wrong it still takes time and some days are better than others but on the whole it is easier. Lydia seems to have remembered a lot of what she claimed she had forgotten but her teacher still has concerns about her. She states she is in a world of her own most of the time and spends most of class sucking her thumb or drinking huge amounts of water. the teacher said when she is doing this she is difficult to reach and almost unteachable. We tried to talk to her about this but she refuses to acknowledge we are even speaking gazing into space and sucking her thumb. When we attempt to engage her she just shrugs her shoulders and starts a converstaion with someone else. She doesn,t really play with toys (preferring to just scatter pieces everywhere) and is extremely disorganised, her bedroom is a disaster zone. She is also very easily influenced by other children. In the past I thought maybe she was stressed by the boys behaviour but on the whole at the moment they are both relatively calm, no more destructive behaviour and self harming from Marcus and although Piers is challenging he is better. I am feeling a bit paranoid at the moment as this is my 3rd child to have problems I feel everyone is looking at me as if i am to blame. Nobody has said this on the contrary all the professionals we are involved with say I do very well in a very difficult situation, but there is one mum at school who won,t even let her kids talk to mine and gives me a wide berth (she also has a child with ASD so should no better). The genetics team asked me if Lydia had any problems and said they wouldn,t be surprised (from the test results and history they had) if she started to show some behaviours but to a lesser severity than the boys. I don,t want to push for a referral myself as I was made to feel as if I was the problem with Piers and my self esteem won,t take that again. Emmet Murphy when I said "it obviously needs to be done" I meant that sometimes in life we all have to do things we sometimes don,t enjoy that is the way of the world and although i agree that exceptions do need to be made for special needs pupils the way of the world is that we all have to do these things. I am trying to prepare my children for the world out there, hopefully one day they will get a job and other responsibilties and if they don,t turn up on time or do the job they are paid for they will lose that job. I believe they are capable of what is asked of them and my belief is that they are in a mainstream school and should be allowed to do as much the same as the other children as possible. If they are really struggling i don,t sit there and force them until they are finsihed but stop and discuss with the teacher. We are fortunate enough to have the twins in an extremely supportive and ASD freindly school and they both have excellent support. I appreciate your views and hope you will appreciate mine.
  25. joybed


    Hi some of you may remember me, I havn,t been on here for a while for no particular reason than life running away with me. I have 3 children one ASD, one aspergers suspected ADHD/dyslexia and a girl with lots of ASD tendencies and some issues with writing, reading and spelling, she is very shy has low self esteem and has concentration problems. The problems I have at the moment is homework with the twins, at the moment they are just getting reading and Piers gets key words to learn. It is extremely challenging to get either of them to do anything. Piers crys tantrums, kicks and bites last night he was gouging at his eyes. Obviously I do not allow this behaviour but it is a fine line between him throwing a wobbly all together and calming him down enough to work. He can do it when you sound out the words but if you ask him to do it he immediately panicks and gives up before he starts. He repeated reception last year so has just enterd year one, he has a statement for 15 hours and a new LSA this year, he is really struggling with the change in LSA. His home school diary and reading record are variable they sometimes say he is coping well and trying hard and other times state he is frustrated and struggling. The first 2 hours after school are a nightmare he is hyperactive, clearly distressed and often aggressive. Likewise walking to school is still an issue and he is cajoled all the way. Lydia was very anxious about returning to school in her words she "didn,t want to change teacher and why can,t things stay the same". She has just entered year 2. Her first day went well with her teacher praising her for good writing and she was happy to go after that. However she is always reluctant to read saying the books are too difficult she clearly avoids trying to read. She often will not look at the book and gets letters and words jumbled up, she mixes up m + n, d,p and b. She reads "no" as "on" and often confuses words she knew last year. She states she finds reading very difficult and is embarassed about it. She is very disorganised forgets her book bag at school and often appears deaf, I have had her hearing checked and their are no issues. She rarely sits still, needs touching to get her attention and you often have to shout her name loudly to get any repsonse and even then she may not understand. My husband who was so reluctant to get Piers diagnosed has suggested Lydia may also be ASD. To make matters worse we were burgled yesterday which has upset all of the children Marcus is terrifed they are coming back for his computer, Lydia didn,t sleep worried they would come into the house when she was here and Piers is just his normal anxious little self. How can I make homework less stressful for everyone. It obviously needs to be done and I do stay calm (so far) but after struggling with one I am mentally exhausted and then have to start again with the other. Marcus is doing well after the rocky year 8 he is now in year 10 and seems very settled at school on the whole, please may that continue.
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