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About joybed

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    Ben Nevis
  • Birthday 06/05/1971

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  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.
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