sue45

Hi Clare, Sorry you and your son are going through this awful time. Katkins suggestion sounded good to me. If you can somehow get over to your son that most things about school are the same as they were, to reassure him - especially any of the bits he enjoys, using pictures and imagery, it may eventually allay some of his anxiety brought on by the changes. It's probably a good idea to try to find a time when he's relaxed to talk to him about it, not when he's already stressed and anxious, and try to come across positively. I know how hard this can be when you're scared of making things even worse and I'm sorry if I sound stupid or that this just isn't relevent to you with your situation with your son. There have been times when I've had real trouble getting my daughter to go to school and many when I've given up the struggle because it's just too stressful for us both to get into such a state. Keep your chin up. Eventually things will calm down again. The attitude of your teacher doesn't sound too helpful. I think if I were you I'd concentrate on dealing with the problem with your son first and then go in all guns blazing when that's a little more stable. For now, you're having to deal with the fallout from the schools lack of understanding - when you're feeling stronger ie; all your energy's not being taken up helping to undo what they've attributed to, try to get back-up from the specialist your son is under. I hope this makes sense, and I really hopes things start to get better soon for you. Take care Sue

I haven't posted for a bit Paula, reading about that poor woman and her son made me want to touch base, so here I am. Sounds like you're having a s**t time - sorry to hear it. Keep your pecker up though, I'm sure there is hope. I'm having a few weeks of relative peace with my daughter and I keep thinking any day now she's going to go off the deep end, but so far so good. It's really odd because just a few weeks ago I posted on here desparate for help and got loads of support and good advice from people like you - and now it's almost as if we haven't got any real problems which is making me feel a fraud for stampiong my feet with the paed and also filling out DLA forms. Never mind. I know it's probably temporary and things'll head down hill again but it's given me hope for my daughter for the future - and for me. I really hope thigns settle down soon for you. Have a good old munch on the old rivitas- not much fun but better than gritting your teeth. And just think about the pounds dropping off... <'> <'> <'> Take care Sue

<'> <'> <'> <'> Good for you Hev, I'm so pleased you went and I hope you start to feel better very soon. Sue xx

Hi Hev, I think you need to tell it to your doctor like it is - as someone else has said. It does sound as though it could be panic attacks you're having, though if you've had asthma, I'm sure your doctor would need to check to make sure it isn't that. Panic attacks are really debilitating and you can feel as if you can't breath - or like there's a heavy brick on your chest. It's really scary. I felt exactly as you do last year when I was having panic attacks, that I had to just get on with things because that was just the way they were. Dealing with my daughter had just really got on to-p of me and I knew everything was down to me and that nothing was going to change that. DON'T BELIEVE IT! You shouldn't be feeling this way and you really do need some support Hev. That horribly desparate sensation you're having that there's no way out because Steve's the way he is and you just have to get on with it is being produced by stress. It's a vicious circle that needs to be broken and you need to get the help to break the perception you have of yourself being trapped in something that's never going to change. This was how I felt, and the way I was seeing things, in a totally desparate aand negative way. And the way i was feeling was actually making matters worse with my daughter because I was so on edge all of the time and jumping down her throat that I was exacerbating her behaviours. I felt if I loosened the strings, or let go a bit, I might unravel altogether and never be the same again. that keyed up feeling over a long period of time is really bad for you. Eventually, I went to my GP, blubbed like a baby because I couldn;'t speak without doing so, and got the help I needed. I can;'t tell you what a relief it was to start feeling like my old self - It's actually only when you start to get yourself back that you realise how low you were and how much that has affected your perception and thinking on just about everything. I'm begging you, Hev, please seek help. You're obviously suffering and the sooner you seek help the sooner you'll start to feel like yourself again. It;'s just taking that first step that's hardest, after that, you may find you start to feel better simply by reaching out in the right direction to ask for the help. Is there someone you trust who you could take along with you to see the GP? It can seem really daunting thinking about what you're gong to say, maybe you could write donw how you feel just to get you started? I really wish you all the best and hope you start to feel better very soon. Take care. <'> <'> <'> <'> Sue xx

JB, I'm not sure, either. After pushing the paed some more she has contacted family therapy and theyve agreed to give us an assessment meeting on 5th april (initially they'd refused saying we weren't a serious enough case- and when I spoke to the decision maker at fT, she told me their resources didn't match up with the amount of refferals they were gettign so it was only the absolute worse cases that were being seen. She kinds of said that as I was obviously a caring mother and they had lots of really disfunctional familys on their books etc, etc, Nothing I said swayed her decision, but thankfully, I did manage to get through to the paed how serious the situation is. I don't think any parent really wants to consider drugs for their child, but if the situation and the child's life has become absolutely intolerable, then it's a choice to consider. I think my own attitude to meds has been tempered by how much they helped me with anxiety and depression. They were a godsend - without them at that time, I'm not sure I would have managed to pull myself out of a very black hole. Our kids are no different - if they're suffering, they're suffering. If the situation got so basd H wasn't able to function, I'd definately consider her taking them. Sorry this is a bit of a confused waffle, I think I'm trying to sort thigns out in my own head about where I stand. Take care Sue xx

Hi Paula, Welcome to the forum. It sounds as though you're having an absolute nightmare. As Phasmid and others have said, dont sign anything until you get your report through and then take it from there. Keep posting, you'll get loads of support here and some very good advice from the likes of Phasmid etc, who seem to know the system inside out! I really wish you luck, and make sure the specialist knows how urgently you require your son's report. <'> <'> <'> Take care sue xx

Viper, your pain is so palpable I could cry. What you're saying reminds me of me last year. I struggled against seeking help thinking I would snap out of it - I ended up in a loo miles from home cracking up down the telephone practically screaming like a lunatic. A break down, nearly. Sometimes being the strong one also makes you weak because you feel you have to keep going and as that's what you've always done, you can't see why it shouldn't carry on. It's actually a strength though, to recognise when you need help, if you see what I mean - and that's exactly what you're doing by speaking to us, you're seeking help. Well done! That menas you've taken the first step. What jo said about not thinking twice about taking medication for something physical is exactly what my GP told me when I was reluctant to turn to drugs for help. She said if you were diabetic, you'd take insulin, if you had a migraine you'd take pain killers etc, What's the difference? And it's true. It sounds as though your husband had a bad experience on anti ds, that doesn't mean yours would be the same. I ws prescribed Serotonin and almost immediately felt more like my old self. The first week i was a bit more tired than usual, but i think that was as much as anything the relief after being so keyed up and feeling trapped inside myself for so long, of finally feeling I was getting back on track. After the first week I had no side effects at all, except I started to feel like my old self again. It really saddened me the way you describe how different you feel now to how you once did with your family - I was the same. I just wanted to run away forever and couldn't imagine feeling good about myself or my daughter ever again. It was such a relief when I started to see the good things about H and myself again. Please see your GP!!! Please, please, please! <'> <'> <'> <'> <'> Take care, you're a strong and capable person who just needs a bit of care and attention herself at the moment and you do deserve it. Sue xx

Hi Hev, Sorry you're feeling so tense. The others have given good advice so i can't add much, except to say, our lives are very stressful and it's pretty constant - so it's bound to take it's toll. I went through something similar last year, I remember talking to a friend who was trying to persuade me to go to see the GP - I kept saying to her, I know what's wrong with me, it's my life, my GP can't sort out my life for me so i've got to battle it out myself. I was in such a state I couldn't see that I needed help. Everything just kept going round and round in my head and I couldn't get any further than thinking, ...this is my life...I've GOT to cope...the GP can't solve my problems or take away the stress of dealing with H. And H was driving me insane. But i thought I'd better knuckle down and just get through it. That attitude nearly led me to a breakdown. I was VERY, VERY, wrong. Once I submitted and went to see the GP I felt better very quickly. Sometimes the first step to feeling better is admitting you're worried that you might not be coping, or you're really worried that at some point soon you might not. You probably ARE coping, and admirably, but it sounds as if the worry is just getting on top of you at the moment. Our bodies and minds have ways of showing us we need support, or help: the shaking you describe is your body letting you know you could do with some help. I hope you feel better soon Hev. Take care and let us know how you're doing. Sue xx <'> <'> <'>

Hi Kinky j, What an upsetting time of it you;ve had. I'm glad you seem to be getting it sorted out and feel you are being listened to by the ss woman. This is a great place to come for advice and support. Take care and I hope all goes well. Sue xx

Thinking of you <'> <'> <'> Sue xx

JenRose, sorry I'm a bit late coming to this post, i have to say I'm flabberghasted! How can they say "autistic traits" and not connect the other issues to these "traits". It's like dissecting an orange and saying the pith isn't part of the orange because the colour of it is wrong ...if you see what I mean...I'm disgusted they are blaming parenting skills when you're the ones who are there saying we need help! I hope the other psch treats you all with the care and respect you deserve. Take care Sue xx

Hi poppy and Jessie, thanks for the encouragement and advice. Hearing about other people's problems helps in that you don't feel alone, but it's also so sad that there are so many struggling. Have some of these <'> <'> <'> Sue xx

Hi mum22boys, I know where you're coming from with the school thing. I've had many mornings strife trying to get my daughter to go to school. Where we differ is that I haven't got someone telling me it's all my fault. I sometimes feel sorry for myself because I'm on my own but I see there is an upside to it - in my imagination, if I had partner it would lighten the load and I'd have support and everything would be that much easier,but of course that's not always the way it works is it? You have my sympathy. I'm sure whe he thinks about it he'll realise what he's saying isn't right. Take care, I hope you get some relief and things calm down a bit soon. Sue xx

Lancelot, I like it... I like it very much, I feel very like a PITBULL at the moment... and yes save it because they're (LEA) next on my hit list....Watch this space... xx

Thanks Curra - it's been an eye-opener. I think you're right, we're seen as cases, figures etc. It's woken me up from my stupor which can only be a good thing. All power to all Pains In Butts!! ...and have some of these yourself... <'> <'> <'> ..we need as much as we can get Sue xx

Florrie, please don't apologise for being supportive. It really means a lot to me that you and people like you have taken the time and trouble to speak to me. I really don't know what I'd be doing now if i hadn't discovered this forum because it's an absolute life-line. I hope all is going well for you and hope your son is coping in his new flat. Thanks and take very good care Sue xx

Thanks Florrie - yep you really do have to keep chipping away. Daisy, I feel liberated! I've always been shy about asking for anything, never mind help - I'm pleased to announce I've seen the light , I'm working up from being afraid to ask, am on to telling, and maybe one day DEMANDING we get the help Take care and thanks! Regards Pain In the Butt

Well folks, I'm beginning to get the picture and to see that you really do have to be forceful to get anything done to help your child when they've been dx. Thanks to you savvy people, I've been chasing up and frankly, I'm disgusted with the way me and my daughter have been shuffled around and messed about. When the paed dx H, she limply offered Family Therapy, only after I expressed shock that was going to leave us to it and see us again in 8 to 9 months with no offer of any support or therapy. I accepted FT. Anyway, after coming on here and spilling the beans about how bad I felt, I rang the paed to let her know how bad the situation was and she said I should contact Family Therapy, which I did. I wasn't able to speak to lady dealing with our case but i was told it was being looked at now and that this lady would phone me to let me know what was happening. I've had no phone call, in the mean time, I got hold of my paed again to ask about medication for anxiety for H. She said she'd rather not go down that route but would rather we try therapy so i said yes, but we're not getting any help at all. I was gobsmacked then, when she told me Family Therapy had contacted her to say they wouldn't being offering Me and H therapy. On top of that, I've just found out school haven't been officially notified of H's dx. Another ######-up! I found myself going over details I've already told her about and her asking questions and going over and over the stuff I've told her already. It was like getting blood out of stone and you would have thought she was rather a stupid person, not someone who has probably studied for years in this, her specialist subject. I had to get really forceful in the end as I felt she just paying lip service. She kept saying , is it worse do think? in the end I said, what do you mean worse? It's always been bad, that's why I came to you in the first place, because we weren't coping. She sounded surprised at how bad things were then- But how bad does she think "I'm desparate," is? or "I'm frightened one us is going to really get hurt if we don't get help." which is what i've said to her before. Anyway, I'm ranting, i just wanted to say, thanks for giving me the strength to get pushy. WE're definately going to get the Family Therapy now, she says. But what `i've learned is not to trust any of them. You go away hanging on in there because you think help is on it's way and it's blooming well not, because someone's decided you don't need it, or the letter's got lost or....There I go again! Sorry. i'm feeling fiesty and up for it. I'm going to keep on at them. I've also got and am filling the dla forms so thanks for advice on thta too. I'm beginning to see what you mean Daisy - you really do have to fight your corner. Thanks folks Sue xx

Hi and welcome to the forum. This is a topic I'm very interested in at the moment as my daughter (dx AS) is having fairly frequent meltdowns during which she becomes violent and attacks me. I got hold of the paed yesterday and asked her about the possibility of medication but she suggested meds can make them dopey and was reluctant to go down that route. Forgive me if I'm wrong, but I think she was talking rubbish (about the dopey bit) can you enlighten me? Does risperdol have that side effect? Thanks Sue xx

Hi Hev, Sorry you're feeling it at the moment and I hope today has brought with it some sense of relief. We all feel the relentless pressure of it sometimes and like the others have said, it's good to release it somewhere safe. This is the safest place I know as everyone understands how you're feeling. Take care and keep your chin up - you're doing a fantastic job and don't forget that. I'm sure your son knows it too. <'> <'> <'> <'> <'> <'> <'> <'> <'> <'> Sue xx

Thanks Daisy, florrie and Hailey for support and kind words. It really helps. Take care Sue xx

Hi Hev, This rings a bell!!! My daughter has always had a loud voice. Even when she's not trying to be loud she just is and it can be very embarrassing when we're out. If someone takes too long in front of us in a queue she will just come out with "Why can't they hurry up?" in her normal (loud!) voice and we get some really dirty looks. Having said that, it can be funny too - we were once buying tickets to get into the cinema wqhen she was about 9 and I asked for two and a half to see what ever it was and she piped up straight away, in a really disgruntled, loud voice, "Two adults and a child you mean - I'm not a half a person, I'm a proper person you know!" and the chap behind started to laugh and agreed with her. I was just praying he didn't go on too much before he got a mouthful about being rude and interrupting other people's conversations. I have to say the noise really gets to me sometimes though. She will come up behind me too and start singing at the top of her lungs, or just make a really loud sound I know it's awful but sometimes i think I can't win because if she's in a bad mood it's awful but if she's in a good mood the noise is incredible too Bless her, she can't win either with a mother like me who's never coped well with loud noises. I literally freeze up and go into anaphlactic shock, frothing at the mouth, head spinning round on shoulders. It can render me dumb. Take care, I can hear her dulcet tones now, hammer drilling their way through the brickwork and drifting up through the ceiling into the flat of my long-suffering and lovely neighbour.... got to go.. Sue xx

Hi Hailey, Very interesting! Thanks very much. (I've pm you). Sue xx

Hi Helen, I think in some respects Paula is right in that as long as you get the support and help you need for your daughter, that's the main thing. (If you are?) But i understand your need to have something concrete so you know exactly what you're dealing with. I don't know what the protacole is for a child so young (mine was 13 when dx) and what kind of help has been offered to you but I know there are many very well informed people on this forum so you can ask and see if you're getting what's available and needed. His description of your daughter's problems does sound ASD. I don't know if it helps but I found the letter from my paed confirming dx a little confusing as on one page she said..."information....confirm(s) my initial impression that indeed H does have Asperger Syndrome/Autism" and on the next page she said, ....behavioural difficulties, and the concern about social communication are due to an underlying ASD (Autistic Spectrum Disorder)." she seemed to be hedging her bets here. I think it's possible the experts are often groping around in the dark a bit because they don't actually live with it but are told everything second hand. I can understand your concern with the "wait and see" comment; how long do you wait and see? Until your daughter's 20? If his dx has made it difficult to access help I'd push for more clarity or a second opinion. As I say, there are some great and well informed folks here and someone will be able to tell you what support you should be getting either way. All the best Sue xx

Lauren, I can relate to not doing simple tasks (like your letter that just needs signing and posting). I've always been likethat and I let things worry me but don't actually take care of them until I really must! How strange we are!! I'm sorry Lotty, I got completely sidetracked analysing people's characteristics in previous post when you actually asked for help. The only thing I can suggest with regard to keeping order, is what my mum tells me to do, which is to do things straight away and put things away after you as soon as you've used them. In order to do this you have to designate 'places' where things can go so that you always know where to find them when you need them. I'm sure that would help in generally keeping organised. Initially, it might mean havign a sort out through the whole house and reorganising so that everyone knows exactly where everything is.Sounds like hell, doesn't it, but probably worth it in the long run. i just wish I could keep to it myself!! Best of luck. Sue xx