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Everything posted by Sooze2

  1. Thanks Jsmum. We saw the consultants dogs body (can't remember what they call them!) yesterday and he was lovely. He is going to ask her and my gp if they will referr DS to the sleep clinc, there is one in Bristol. In the mean time he has doubled his menatonin to 4mg - which is great but I promptly lost the prescription so will need to get another - I had a lot on my mind and was trying to act normal! Hopefully they will give me another script because getting DS's meds is like going underground to get class A drugs here and they may not beleive that I lost the scipt but may think I have sold his Concerta which was also on it!!!! He sugested that it may be that the concerta is wearing off too soon and he is getting a bit hyper before bed and so that is why the Menatonin is not working very fast - I thought that sounded good. He never has caffine and hates chocolate, only has sweets once a week (hates me for it but has good teeth! ) god I'm mean! Anyway we'll see how it goes. Things will probably go haywire now anyway because my DH left me this morning - hey ho!
  2. She said that they can't give a higher dose last time but I will ask again tomorrow. x
  3. My son has asd/adhd and I found all the fish oils made him very very hyper, especially those ones with orange in (I can't bear to recall the reaction he had to those!) Is your son wild and hyper in the evening during the weekends and holidays or is it just after school? Is he like it at school? My son was hyper all the time but far far worse after school partly due to being stuck in all day and the other part due to him not coping and zoning out at school and being unable to follow anything that was going on. He has been medicated for a year now and he is so much happier and it has changed his life to the point where he asks for his meds because he feels the positive difference they make to his life, he was very unhappy before. I'm not sujesting you medicate - school and consultant had to persuade me to do it to be honest because I was against it (scared of it!). His consultant did say the same as Baddad - it was an unknown quantity what effect medicating would have on him because she said that if his ADHD was crontrolled by the drug his ASD may have come more to the fore and he may actually appear much more Autistic and different to his freinds which could have a negative effect! What she said has happened but to very very a small degree but he is now feeling more included in life and has even been taking part in a majour theatre production in the local Secondary School (he is primary) for the last few months which is totally incredible considering before leaving the house at all caused him trauma! He is on a low dose which has changed his life in an imensely possitive way, because he now copes and can actually listen first rather than meltdown first which is great. Sorry, I'm rambling and I know this isn't what you asked about but I thought I would reasure you that medicating isn't always a bad thing. I felt that I had failed as a parent when the consultant sujested it (told me he had to have it!) the second time because I don't beleive in medicating for anything - I was very very unhappy about the whole thing. hth
  4. I did the test based on someone I know Aspie Score was 130 of 200 neurotypical score was 65 of 200 I had to say I don't know to some questions it said you are likely an aspie So for those in the know, what does that mean in terms of - what am I dealing with? It was for an adult and things have been hard and seem to be getting harder. I can't really say anymore than that....
  5. Thats exactly the same for me!! I am sure it was actually my brother that told me I was adopted because I don't remember being told about it but I suddenly changed when I was about 4 according to my cousins. My brother told me he told me, which would n't have been in a nice way but my Dad always talked about it as if it was totally normal and very factually. I approached telling DS about his diagnosis in the same way, he knew he was different he knew he was struggling and getting told off all the time for what he thought was no reason so I told him before we went to all the appointments that we were trying to find out exactly what he found hard so he can get some help with it all. He was all for it because he was a pretty unhappy boy by then.
  6. Does anyone else have family who refuse to accept diagonosis, or indeed that there is any problem at all? What problem? There is no problem with my son at all, I should just get him to stand outside the front door for a while and he will soon behave - it worked with the other grandchildren and her own children. I did put the mother in laws advice into practice once and luckily I went to the front room window to make sure he was still there and he was gone - I found him in the park! He had just turned 3. He was supposed to be too scared to run away. Or I could smack him or lock him in his room - "didn't do you any harm, parents are too soft these days". ADHD is just a name people with naughty kids made up and they give them drugs because they are too lazy to discipline them - "actually ADHD was first recognised in 1845 Dad" - don't be so rediculous - sculks off to look at something very impotant in the garden etc etc etc etc Its ok though - he's polite and he eats well, thats the main thing and we have all managed to avoid talking about anything real for the whole of our lives so we don't have to face up to the reality of anything. Dh accepts it now, but up till about a year ago he thought everything DS did was normal because he seemed just the same as he was as a child........................................ He can't cope with him but thats normal! So there is no support at all, just a very mad woman laughing insanely in the middle of the night Hugs for everyone. I am totally sure ASD and the like are inherited - how can there be so many people with a diagnosis or with children with a diagnosis that have so little support, perhaps it's a little like looking into a mirror for some members of the family and they just don't know how to deal with it. I know DS gets a quite few things from both me and DH - lack of sleep definately from me etc etc.
  7. HI Julie, thanks for that. DS had his addenoids out when he was 5 (along with grommits in) because he was still drooling a lot and also snoring terribly, didn't help him sleep but did stop him drooling and snoring so not a bad result - 2 out of 3.... Did they put monitors all over your daughter and how did she manage to get to sleep wearing them? We have the same problem, with DS in that he can't switch his brain off and it is still wirring while he is asleep! We used to say that the only reason he slept at all was because his body was so tired even if his brain was still awake!
  8. I am hoping someone will say yes to this question because I have asked for DS to have a medication review (yes I had to ask! ) because his sleep is becoming a problem again. He takes 2mg of menatonin every night which is taking longer and longer to work and now he is not getting to sleep till around midnight again and a bit of sleep talking is creeping back. I am very concerned that soon I will be back to staying up at night to stop him sleepwalking around the house and screeming like a banchie at all hours! Witout the pills he can hardly sleep at all, he also takes concerta xl for ADHD which I think needs upping but that is for another post! The consultant who prescribed the menatoin said that there may be a risk of it causing infertility with long term use so I would really like to find out why he can't sleep so we can make an informed choice about the long term treatment of this rather than accepting the first thing that is offered. I have done an internet search and it turns out that our local hospital do sleep clinics - I think it seems strange that it hasn't been sujested to us by the pead before but there you go! Thanks in advance Suex
  9. Darling Sally, I really don't know what to say. You have given me such great advise to my problems and I haven't got any for you so I am sorry. All I can do is offer a few of these <'> <'> <'> <'>
  10. I think you were lucky Chris, I think the care we all get is mostly down to where you live. All my area seems concerned with is a diagnosis (if you push for it and getting someone to talk to you is like speeking on a telephone AFTER its been disconnected!) and to be put on meds then discharged. This is what has happened with us, the CHAMS O/T has now discharged DS which I only found out about when I phoned her the other week for advise, her only aim was to help with the initial diagniosis and make sure he was no longer throwing chairs in school so once he was medicated and so easier to deal with her job was done - period! My freind in Cornwall has a boy of 18 months who we all have concerns about and a SENCO attatched to his nursery is referring him to a pead for assement with a view to looking into Autism. All this has happened within less than 2 months! It took 9 YEARS to get help for my son who she says was worse than her boy by a long way and I live in Devon - the county next to her - it really is a post code lottery!
  11. Parent Support lent me a brilliant book to read to siblings called GWERN. I read it to all of them together inclunding ds who has ASD and it really did a good job. The book has very few words but it summed up DS very very well and I said that if there has been books written about Autism then there must be loads oand loads of people with it otherwise no one would buy them I have told him Autism is very common and that it doesn't meen there is something wrong with him but that he thinks differently sometimes which is why he knows so much about so many things which is brilliant - he loves to read and research cars and facts. He also has ADHD and I'm afraid I told him that if he was to have anything that is probably the coolest thing to have! Probably not very good for me to say but his main aim in life is to be cool and for him having to take meds to calm him down meant that he wouldn't be a mad and crazy boy - which is what his friends liked about him so I had to explain it all in a way that actually made him think he was cool. Anyway, I hope this helps a bit. I feel that its best to be honest but tailor it to your child.
  12. That is a very interesting comment to me because one of my 7 year old twins who is very like my ASD son in so many ways does exactly this - she will say she is tired and put her thumb in her mouth and cuddle in or zone out as soon as something she can't cope with happens especially socially! Today she has been very hard work and I have been thinking more and more about seeing about getting her assessed, I have been for a long time really but the thought of going through it all again scares me rigid! Don't know why! Anyway - Sally, I did a post containing the same thing recently - School and the head are saying that DS's innability to concentrate etc are due to his lack of sleep. He has ADHD and ASD and does have a sleep problem for which he takes menatonin so he sleeps 10 hours per night. The head said 10 hours isn't enough but last night I was reading about sleep dissorders on a website attatched to a hospital (so reliable) and it stated that for a child of 10 the ideal amount of sleep is 9.5 - 10 hours. I personally feel that either our kids are bored at school because the lessons are - well - boring or their support isn't perferming properly. Or it couldbe that they are the type of kids that just find school boring and would rather be somewhere else which at lot of NT kids feel too. Schools don't seem to allow for different personalities and need to blame SOMEONE for the the reasons why they can't get through to the child. Perhaps its a personality issue - the teacher and child don't get on like DS and a certain teacher who does art and handwriting for example - very few of the children like her and I have been told she has a very dry sence of humour that DS probably doesn't understand - why 99% of the other kids don't like is not known though Sue
  13. Just wondering, has anyone's child ever been to a sleep clinic? Would it be a good idea to find out about this rather than just keep him on drugs indeffinately? When I asked my old GP about it she basically told me to go away but Ive changed now so it may be worth an ask eh
  14. I would say yes. There is a very good reason why I am here at this time of night and it is because I have run out of menatonin and my son is still up! My son started taking it when he was almost 9 and the results were amazing. It does take an hour or 2 to work but it has stopped him from sleepwalking and stopped his terrible night terrors so any sleep he gets is quality sleep rather than disturbed, restless, short lived sleep.
  15. Well. it's nearly 2am and I've just checked DS before going to bed myself and he is still awake! I put my head around the door, was about to go in and turn his TV off (only ever used for the playstation) and he is wide awake watching a DVD with his freind who is sleeping over sound asleep next to him. He is usually asleep around 10, I turned the light off at 11.30 due to freind staying and lots of anticts going on I let them stay up. Last night he was still awake at 12.30am and woke at 7.30 am so around 6 hours sleep was had IF he went to sleep when I turned his light off! He should have been out for the count as soon as his head hit the pillow tonight really eh!? He hasn't had his sleep meds for the second night running due to me forgetting to pick the prescription up, I knew there was something I had to do on Friday............... Well at least I now know they work, DH thinks they don't due to him still taking ages to sleep but is usually off to la la land by 10.30 at the latest. Boy are we all going to suffer tomorrow! Had to tell someone since I'm still up. Must go and buy him some Medised tomorrow so he can sleep. It just shows that the Head Teacher of his school is delusional if he thinks that DS having 10 hours sleep on medication is not good and he should have more! 10 hours is a mircle compared to this and this is how it was for the first 9 years of his life. Now I remember why I have now got a sleep dissorder of my own
  16. The Daily Mail say that the Police, NHS and other agencees etc had been involved in the family for several years. Very sad for all concerned
  17. That is so very sad - your poor brother!
  18. Sooze2


    I didn't want to read and run but I can't really advise you. My GP had the same attitude when it came to my son, the last one I saw there said that I was wasting my time calling or seeing them as they don't deal with mental health problems to which I replied "he hasn't got a mental health problem, he has a neurological condition" which the Autism Outreach people told me after Parent Support at his school felt sorry for us and called in all the relavent people to see DS. I changed Doctors after that because I'd been begging for someone to see DS for 8 years but they just wouldn't have it. It must be hard not being able to change. I really feel for you because with school out of the picture there doesn't seem much support out there for adults. Could you keep getting a repeat prescription until your usual GP comes back? Or if you were diagnosed by a consultant could you ask them to see you and talk about your meds and prescribe them? Good luck anyway.
  19. Thats lovely. I do think that its the parents that have the problem with this because a lot of Mums have said they took them away when they reached a certain age as a lot of you have said. What a shame to take away their comfort isn't it! Some of his freinds have said their mums have taken them away too so its obvious they would still have them if it wasn't for that. I cuddled a fluffy Welsh Guard until I met DH at 24. Its the same with DS sleeping on the floor, parents think it's wierd but I'm sure some of their kids would do it too if they were allowed, I don't really take any notice until someone comments on it. Perhaps all this just lets me know that I am probably a bit different myself because I don't understand why I shouldn't let him do these things especially when it comes to him sleeping - well - he sleeps now which is still a novelty!!
  20. Sooze2

    Annual Review

    Good Luck for tomorrow <'>
  21. I was just wondering at what age do boys stop having cuddley toys in bed with them? Probably a silly question but DS has made up his bed on the floor the last couple of nights (usually in a high sleeper) and he has brought half his soft toys off the bed and lined them all up behind him next to his head. He is 10 now and in year 5, one of the toys weres a dress. I'm not bothered about this but I wondered when I should be aware that his freinds will start noticing that he still does this and they don't have these type of things anymore. One of the mums thinks cuddley toys are for babies only and takes them away once they start school, she made a comment about someone else a while ago.
  22. Thought I'd add another comment, my son has now started sleeping on his bedroom floor again - I have no idea why. He makes up a really good nest and sleeps soundly all night - in fact he went to sleep the quickest last night than he has for a long time. For some reason he finds sleeping like this comforting. Still, at least he's not right infront of the door like he used to be, he used to drape sheets from the door, shelves and wardrobes to make a kind of tent over himself and when you went in he got bumped on the head and woken up! Just quicky, your boy could just want to shut off. This is exactly how my son switches off when he's had a bad day or towards to end of term when he's had enough - the blanket and duvet come into the frontroom along with cuddley toys, tv goes on and he zones out. I think he feels safe and cosy - like it is when they are ill and being looked after and having their snacks and drinks in the front room where its nice and quiet. He does this a lot now and I'm sure its just that there is so much going on at school and so much homework etc etc that he just needs to chill at home and have no demands on him.
  23. First of all thanks a lot for replying I went to see the head about it on Friday and although he seems quite nice and smiley when passing he is actually quite scarey and had this tense red eyed/red faced furey going on which he tried to hide but didn't manage it very well, in fact he looked like my son does before he's about to go into one!! Anyway he defended everything, said that ADHD kids often feel invisible and say they are being bumped into in the palyground a lot when in fact they are the ones running into eveyone (I can see that bit) and I should talk to the teacher about the wording if I want it changed. I chickened out of giving him the really good letter I wrote because I realised that there would be no point as he is obviousely the world authority on my child and would know better. He went on to ask me about his sleep and said he wasn't getting enough when I said he has around 10 hours a night now - I said considering he has a sleep disorder and was getting half that before medication I think he is doing very well - he said he needs 12 hours every night and that is probably why he can't concentrate! I know 7 year olds who get a lot less sleep than that and are fine! Basically he is right and I am wrong - end of and if you challenge me I will get a crazy look in my eyes until you agree with me and go away As for the home work, I eventually got last weeks yesterday, it needed to be in this morning, we haven't done it due to me doing his sisters' and running out of time so he will get a timeout now. When we went in to school to find the diary that the homeowrk is stuck in was nowhere to be seen then later the TA came to my house to give it to me saying it was on his desk which it wasn't - I looked! One of the TA's said that they remind everyone each day to do their homework and it has now occurred to me something which we all know about a lot of ASD kids it that don't know they are included in the term "everyone" and need their name used - which school know applies to DS because I have told them about a million times before. So, tonight I need to go in AGAIN to tell them that they need to ensure his homework is in his book bag - they must have forgotten that - I wrote it in his homework diary which the teacher signs last week but still........ Autism outreach are phoning me tomorrow so I will talk it over with her just to confirm I am not going mad and get advise on how I am supposed to make the teacher see the error of her ways.
  24. You sound so much like me. I have no advise but just keep plodding on. Does your son have a Statement? My son got one last July and I am still going through the same issues that you are facing, they tell me he's fine and doing well then write in his IEP that his concentration is dependant on what is going on at home - so basically they have no part to play at all - apparently... Good Luck.
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