cmuir

Hi 'Fraid the letters and emails were a follow-up to the fruitless meetings with supposedly the relevant people! Caroline.

Hi Feeling extra fed up tonight! Useless husband in bed snoring his head off without a care in the world, whilst night after night I'm either writing letters or desperately trying to find something on this forum that's going to help get my son a formal diagnosis. I've been battling on my own for 2.5 years to get a diagnosis for my 4 year old son. Heard a couple of weeks ago that the EP is only going to apply for outreach teacher support when my son starts school this summer. Seems that support is for the teacher ? or should I say teachers! Turns out my son is going to have the added confusion of having two part-time teachers, neither of whom have taught a child with special needs. I've sent 3 strongly worded letter to the appropriate people stating that they're setting my son up to fail before he even starts mainstream school. I've also demanded that they give him the full-time support that I was told he'd get 3 months ago. In addition, after having waited 3 months, heard that CAMHS are refusing to see my son on the grounds that he's in the assessment loop. Even after I advised that that assessment loop means that my son have been seen by a specialist on average every 4 months. Now got 19 reports since last July and getting nowhere. That's the second time in 6 months that CAMHS have been asked to see my son by his consultant/gp/hv. Infuriating thing is that in order to get a diagnosis they have to assess him and if they're refusing to assess we ain't going to get a diagnosis! It ain't rocket science! Meanwhile, the little fella's behaviour is getting worse (partly because he's on holiday and out of his normal routine) and more and more challenging/difficult to handle. The list goes on. I really feel like telling these so-called idiot-specialists to leave us be now. Each time I get a date for an appointment I naaively think that we're a step closer, but how wrong am I! Have to laugh when drug addicts, etc get help from social services, etc when they ask for help, but when I ask for help I've got to fight tooth and nail. What do I have to do to get help for my little boy whose clearly behaving the way he is because he's crying out for help. I've written several letters so I'm waiting for the replies. In the meantime ... Sorry, I know I sound negative and miserable. Can't help it. Just feel desperate and feel like I've failed my son. Caroline.

Hi This might sound really cynical, but I wish they'd bloomin' well make a documentary about families living with ASD. Just watched the documentary on selective mutism and I'm normally the type of person touched by medical type issues, however, I found it really hard to sympathise with something that is self-inflicted as opposed to something that outwith anyones' control. Guess I'm sounding of a bit ? I'm still battling to get a diagnosis for my son. Heard after waiting 3 very long months that CAMHS will not see him (second time in 6 months they've been asked by my son's Consultant/GP/Health Visitor). Just gets me when I see people with a lot less problems getting media coverage and medical intervention/assistance. Boy I do sound catty!!!? C.

Hi After hearing that CAMHS are refusing to see my son for the second time in six months, I've spent the past couple of nights drafting out a couple of very strongly-worded letters. One is going to my son's consultant to get her the chase things up and the other is going to CAMHS. I've basically said that it is imperative to get a diagnosis in order to get help and support from some services which are only accessible with a diagnosis. I've went on to say that they are denying us the help by failing to assess my son which would contribute towards a diagnosis. Finished off by saying that the letters and responses would be going to my MSP. Feeling quite smug just now ? hope that puts a rocket up their backsides! Meanwhile on the education front, got a response from the parent and pupil support education manager who seems really helpful. He's contacted our EP to get more information. Don't think they've got a leg to stand on as the EPs very own report states that my son poses a danger to himself and others and needs very close supervision. Nursery Manager's report says the same. Think I may have them by the dangly bits after quoting various Acts! Fingers crossed. Here's hoping! Would like to remain smug for a bit longer and hope that I don't end up feeling like I've fallen on my face again. Caroline.

Hi It really is a difficult one and I think a very personal decision. I don't have any advice, just my thoughts on the subject ... I think that it's all well and good for these so-called experts giving lectures, but they're the ones that clock on a 9 and finish at 5 and don't have to look after a child with emotional, behaviour and learning difficulties 24/7! That may not be helpful! May be my ignorance, but I think it's a gamble or a lottery in terms of the harm that MMR does. The MMR issue was definitely covered up ? forget the name of the Dr who 'came out', but he was effectively deported to America! Aren't there separate injections available? After all, you're not saying you don't want your child to be immunised, you're just saying you want the option to choose whether to opt for the 3-in-1 or 3 separate injections. Go with your gut feeling. If it doesn't feel right ? don't do it! Best wishes Caroline.

Hi We've been on the receiving end of something similar. it's amazing how to start with people appear to be all very sympathetic and understanding ? that is, until a point!!! I'm afraid I tend to keep people at arms length. I'm still battling trying to get a diagnosis for my child, battling to make sure the school which my son starts this summer will give him the support he needs, and battling against CAMHS who have refused twice within six months to even see my son. I feel like I've got enough on my plate. Just don't need people like that. Caroline.

Hi My son is being assessed for "something on the spectrum". I keep telling specialists that he has sensory issues. Some of the signs being: - extreme dislike of having hair brushed or teeth cleaned - hands fly up to his hears when he hears a noise he dislikes or an unexpected noise - he doesn't seem to feel the cold eg wears clothing inappropriate to weather - takes all his clothes off at every opportunity - when running a bath and is forewarned about not putting his hand in bath water because it's hot, he'll ignore and put toys in hot bath water and apparently not feel it (even when it's burning hot!) - the list goes on These so-called specialists haven't listened to a word I've said and have ignored the sensory issues to concentrate on other things. After more than 3 years of battling, we still don't have a diagnosis. Read a fantastic book called The Out-Of-Sync Child by Carol Stock Kranowitz. Amazing. I agree with everything you've said after having read this book. Caroline.

Hi I've sent out several letters/emails to various people within the education department stating that they've went back on the support that was originally promised and that the proposed level of support is inadequate to say the least. At least it's in writing now. I've also pointed out that they'll be setting my son up to fail before he even starts school! They keep banging on about mainstream schooling being best and I'm willing to give it a try on conditon that they ensure my son has a level of support commensurate with his needs. Forgive me for being negative, but it will no doubt fall on deaf ears again!!! Feeling extra low because on top of the school/support issue CAMHS have decided they won't see my son ? took 3 months to tell me that. CAMHS specialist finally returned one of my calls this afternoon. I'm afraid I left her without any doubt as to what my feelings are and how they've turned their backs on my son. They won't see him on the grounds that there are other specialists involved. I pointed out that we've been in the so-called loop for over a year and nothing constructive has happened. In addition, the assessments that she spoke about are singular and happened over 3 months ago. She just wouldn't see reason. I'm livid. I promptly got on the phone to our consultant who's on holiday! 'Fraid this just adds fuel to the fire and I'm even more mad, especially when I discovered it took her 7 weeks to send the letter of referral. That will be going in writing in a letter of complaint. Talk about banging me head against a brick wall. Does anyone actually listen? My little boy is behaving the way he does because it's a cry for help ? he's not coping! I can handle the behaviour, etc, but what I can't handle is watching him 'suffering' and him not being given the support and guidance that he so desperately needs. I'm trying to hold down a full-time job and do the very best I can for my son and it's still not good enough. I feel like I've failed him (I really do). I'm desperate and can't get anyone to listen. What now? Caroline.

Hi Thanks for the advice. Just discovered this morning after waiting 12 weeks that CAMHS won't see my son on the grounds that there are a lot of people involved already. They feel this could be detrimental. I agree, but it's clear the wrong people are seeing him and not damn well doing anything. I'm so upset and annoyed! Caroline.

Hi Probably heard this all before, but ... My son is 4 now. Since he was just over a year old I've been on and on and on at my Health Visitor and GP trying to persuade them that something wasn't quite right with my son (namely his extreme and off behaviour). Have to let off steam, but they're both a couple of useless so-and-sos. It took several nasty letters and 2 years later to get them off their backsides and refer my son onto a Paed. That was last July. Since then there are now 10 people seeing my son who say they've looking into possibility that my son "has something on the spectrum". I'm fed up that we're being passed from pillar to post. I work full-time and spend every night looking at this website for advice, reading books, writing letters, etc. Feel like I've finally ran out of steam. HV and GP don't return phonecalls (5 this week to be precise!). Been waiting on an emergency referral since mid January to CAMHS. Specialist is dodging my phonecalls too! Sick fed up getting nowhere. Meanwhile I have to put up with a barrage of physical and verbal abuse from my son. Breaks my heart watching him behave the way he does and he so desperately needs guidance and support and isn't getting it. Can't take him anywhere without him flying off the handle. He's so controlling. My husband has to be one of the most selfish, self-centred person that I know as he leaves everything up to me. Also having a battle with EP/Education Dept as son is due to start mainstream school this summer. The support they said that they'd be applying for hasn't been applied for. I'm livid. I'm fighting a losing battle. What now? Caroline.

Hi I think she has done you a dis-service and let you down badly by effectively forcing you to seek a private diagnosis because she was too spineless to disagree with her boss. Have to say I'd wouldn't hold back and I'd tell her how let down you feel ? no wonder there's bad feeling (she's incompetent!). So-called specialists like that have no idea how us parents agonise over seeking a diagnosis. Just my opinion! Caroline.

Hi I'm not expert, but thought occurred to me that facial and verbal tics may be Tourettes Syndrome (an Autistic Spectrum Disorder). My 40 uncle has Tourettes and it's been covered on TV by various documentaries over the years. That said, I know that some ASD can 'overlap' others. My uncle has had it since he was a boy and was only diagnosed at the age of 19 (less was known about it 20 odd years ago!). I remember him as a kid and even more recently as making all sorts of strange noises, facial expressions as well as spitting and clenching his fist, etc. These tics tend to get worse when he's stressed - they're involuntary. May be worth investigating further. Best wishes. Caroline.

Hi Just a thought, but maybe it's nothing to do with school ? maybe puberty (a bit early granted, but possible?!). Caroline.

Hi Tally That's just it, a diagnosis of autistic features is enough to get my son the support he needs at nursery (just been given one to one support starting 4 weeks ago). However, seems it's not enough to get him support he needs when he starts school in the summer. I keep hearing from these so-called specialists that as far as they're concerned we don't need a diagnosis ? oh but we do!!! We can't access the services that would otherwise be available. Reason I'm considering seeking a private diagnosis is because it takes so damn long to get anywhere on the NHS eg we've been waiting nearly 3 months for an emergency referral to CAMHS! I realise that there are milestones that a child has to reach in order for specialists/others to actually see the differences/compare with other kids, etc, but my main issue is that there are long waiting lists. If you were paying for a service like an assessment which ultimately could lead to a diagnosis you wouldn't have to wait anything like the same length of time. Caroline.

Hi Ooops, I'm really sorry. I didn't know what PM was ? until now. I'll certainly do that. Thanks. Caroline.

Hi Carrie I heard that XXXXXXX was off on long term sick leave? Is she back now? Caroline.

Hi Nightmare! I have a 4 year old son who is due to start school in the summer. As yet, I'm still battling to get a diagnosis. He's had numerous assessments and I'm still waiting on referrals ? being passed from pillar to post in other words. Everyone is in agreement that there is something wrong and are only willing to say 'something on the spectrum'. Finally, he's just started being given one-two-one support at nursery. Anyhow had a meeting with headteacher, EP, etc at mainstream school he's due to start in the summer. Was horrified by that dinosaur of a headteacher, who is thankfully retiring before he starts school, so I'm not going to worry too much about her. However, the support (a full-time learning assistant or auxiliary) that the EP lead me to believe isn't going to be there. When I insisted on being given a straight answer, all she could say was that the teacher would get outreach support from a teacher from a special school to visit (couldn't say how many hours per week). Typical! I need to get wise and fast. I was going to write to my LEA (take it that's the education authority?) and request a statutory assessment. Was also going to write a letter to say that I think the support that is currently being proposed is grossly inadequate and they'll effectively be setting my son up to fail before he even starts mainstream school! In addition, in the absence of a formal diagnosis, think I need to get a private diagnosis. I'd be really grateful if anyone could advise of a specialist that they have had positive first hand experience of ? NAS couldn't recommend anyone! Also, who and what exactly are the Early Years team? Are they in Edinburgh? Please help! Really desperate! Advice gratefully received. Thanks. Caroline.

Hi Really peeved! Had a meeting this morning with a mainstream school headteacher, health visitor, educational psychologist, care worker, nursery manager, specialist teacher (ASD) about my son starting mainstream school in the summer. Prior to the meeting, I was led to believe that my son would be given near-full-time support as is aggressive and challenging behaviour is a big issue. That support was supposed to consist of supervised playtime at breaks and lunchtimes as well as support in the classroom. However, today I was advised (only after insisting I be given a straight answer!) that the support is only going to consist of outreach support from a teacher from a special school. I'm liviid! That simply isn't good enough. If my son is to succeed he's going to need a lot of support initially, then after the 'settling in' period, revising support if necessary. I therefore asked how much outreach time he would get and again was given an evasive and vague answer. I won't be told anything until much nearer August. Aaaaaarrrrgggggh! Any good ideas as to what I should do next? Thought about phoning the education liaison person and having a good rant at her! Decided that's not a good idea and am now thinking I should send letters to everyone who attended today telling them how disappointed I am with the level of support that's being offered. Really worried, my son is going to be left to struggle with a bunch of idiots that pen-push and sit with their calculators! Boils down to money doesn't it!? Headteacher has also decided that the primary 1's will be taught by 2 teachers: one in the morning; other in the afternoon. I asked if either teachers had any experience teaching children with an ASD and was told neither had taught any ASD kids but were very experienced. Was also told that if he's badly behaved he'll be disciplined accordingly. I really feel that there's a big difference between child behaving badly because their simply being naughty and a child who is behaving badly because they have an ASD! My stomach's in knots and I haven't a clue what to do next. Been advised that we're too late to get him into a special school because of the holidays. Also told that because my son hasn't been formally diagnosed, that he wouldn't get a place in a special unit anyway. HELP! Advice welcomed. Caroline.

Hi The school for children with emotioanl and behviour problems that I went to see was very impressive. I asked question after question at them, one of them being about the reasons for the kids have emotional and behavioural problems. In simplistic terms, the assistant headteacher, who is a very large woman, told me that they've found there are two groups of children. There's the group that call her a fat cow simply because she is fat and that's how they see her. On the other hand, there's the other group that call her a fat cow purely to be nasty. It was that comment that really struck a chord, because there is a big difference between the two groups. The school are very aware of that and teach the children in these two separate groups. I therefore don't think that this type of school should be written off. I guess it depends on each school, but the one that I saw I was very impressed. They are also fully aware of the reasons why kids have behavioural and emotional problems and do their best to help and guide them. They also work directly with their on-site specialists (social workers, occupational therapists, psychologists, etc) and parents. They also offer a lot of support when they feel that a child is ready to be integrated back to mainstream ? it's done slowly and staff accompany the child. They aren't just left. Inevitably some people will have had negative experiences. It's worth investigating and asking lots of questions. Just my opinion! Best of luck ? not an easy decision. Caroline.

Brilliant! Thanks. Caroline.

Hi Can anyone advise exactly what is a statement and how I could go about getting one? I'm guessing that it's like a record of needs for school which details a child's difficulties and how they can be managed as well as a progress plan. Thanks. Caroline.

Hi I'm facing the same dilema. Have to say, I went to visit a school for children with emotional/behvioural problems in my locality and there was lots of things about it that impressed me. I had difficulty working out how my son compares with some of the other kids. I thought that the school knew exactly what they were doing. They have specialists in-residence. I liked the visual timetables ? the kids knew exactly what they were doing from one day to the next. They had quiet room and even a room with padded walls (many a time, I've wished for one of those!). I guess the question very much depends on what your child's difficulties are? If the behaviour overshadows everything else, then it's definitely worth considering ?�I've considered it! Personally, I don't think that school is for my son just now. I feel like we're in unchartered territory as he's due to start primary school this summer at the age of 4.5. My main problem was that I don't know how my son's behaviour compares against the other kids. Have to say, I saw a lot of behaviour from the special school kids that reminded me of my son. I do feel that I have to try mainstream first and if it doesn't work out, I would definitely consider the school for children with emotional and behaviour problems. I keep hearing that as such whilst you can't ignore the reason for the behaviour (ASD!), the problems still need to be tackled and handled firmly. If the behaviour is a massive issue, then it makes sense to me to tackle that first, then go back to mainstream. I think it's a very personal decision and not an easy one. Best of luck with your decision. Caroline.

Hi I'm facing a bit of a dilmena just now in terms of deciding whether my son goes to mainstream school or a special school. I manage to make my mind up and then hear something that manages to change it again and again! Ideally I would like to try my son in mainstream, but I'm concerned that if he goes to mainstream and it doesn't work out, will I have a massive battle on my hands to get him into a special school? Generally speaking, has anyone found they've had great difficult going from mainstream to special? I'd be grateful for any advice. Many thanks. Caroline.

Hi I'm facing exactly the same dilema as you are. Have to say I'm a big believer in gut feeling. I've looked at a special school and felt that it wasn't for my son at the moment. I've arranged a meeting for this Wednesday with a mainstream school headteacher and our EP/HV/care worker/nursery manager amongst others are all going to be present. Basically, I'm looking for a lot of reassurance and if I don't like what I'm hearing, he ain't going! I'll keep looking elsewhere. I guess it very much depends on the level of 'disability' that you child has. If his speech and language isn't great amongst behavioural problems, etc then I would say special school. In our case, the main issues are interacting with others appropriately/behavioural. Intellectually my son is very clever and I know he shows a lot of potential ? it's crucial that he gets the right guidance. My only advice is to ask a lot of questions. I know that when I looked at a special school I felt that there were a lot of kids a lot worse than my son, which put me off. I don't want to set him up for a fall in mainstream, but I believe I should give him the chance and after 6 months if I see it's not working, I'll make sure he'll go to a special school. Best of luck. Caroline.

Hi I really sympathise. My son is four now and I first started noticing exactly the type of behaviour that your talking about when he was just over a year old. My son would bang his head off solid plaster walls, hit himself in the face/head, deliberately knock a cup of hot tea that I was holding over me, he used to poke me in the eyes, grab my face, scream, destroy things, throw things, the list goes on. The main thing was the lashing out and aggression. I have to be honest and say that I've struggled and struggled and it's only been over the past 8 months that anyone has actually started listening to me. My health visitor and GP didn't seem interested, they kept saying it was the terrible two's and because I work full-time, I kept getting the finger pointed and asked questions like 'oh you have quite a demanding job, must be difficult ...' ? in others words ? you can't cope!). It was only after me persisting and writing a couple of strongly-worded letters that I got somewhere in terms of a referral. Even now the diagnostic process is very slow with assessments after assessments and they can be very repetitive. One thing that my health visitor did explain was that because there are developmental milestones that a child reaches with age before anything is noticed. In addition, it was obvious what my son's problems were when he started nursery. My advice is to push and push for a diagnosis and get into the diagnosis loop. The sooner it all starts, the sooner you'll get a formal diagnosis and be able to start accessing the services that are available. Because you have ME and a baby on the way as well as another sibling, your first point of contact and key person to targets is really your health visitor. You could also contact NAS (www.nas.org.uk). I realise that I may not be giving you any quick-fixes, I really just wanted to be honest about what I've found. If it's any consolation, I found that my extremely violent son behaviour has became a little better with age. Best wishes. Caroline.