Mother in Need

Jomarie, change a few details on your story and your situation is very much the same as mine! My ex is abroad at the moment visiting his parents, and I am sooooo hoping he'll decide to stay there...good riddance.... I really know how you feel! My AS son is so frightened of his dad that he won't be left alone with him at all. If your ex is anything like my ex, he won't even know what autism means, nor that his son has it.... I have been wondering what I would do if it came to where you are now, and I have come to the conclusion that I would take him to court to take away his parental responsibilites as he is not fit to be their father (I have three boys in total). For now though he only wants to see his kids when he feels lonely (this is my impression anyway)(every few months for a few hours only) and has never had them over to stay.

Mirry, do you want a copy of my son's DLA forms? I'll send them to you if you want. Some other parents did that to me and I found them soooo helpful, as it gave me such a clear idea of what to write (and to be honest, I copied whole parts of them). Let me know and I'll email them to you. As I said, my son does not have to do any homework, and you can request/insist on the same. My son is not settling into school at the moment either (he is now year 8) and the school has jsut today come up with a plan to ease him into lessons more slowly over the next few weeks instead of having to plunge in fully as they've attempted (againast my will but he created such a fuss today that they've decided to listen). I'll hear more about it on Monday apparently.

Crikey Paul, not very confindence inspiring, isn't it...

I too had a hard time with my youngest (NT) who was born with a hiatus hernia and wsa constantly vomiting blood all over the place, he was finally operated on at age 2 3/4. BUT that took changing GPs and then still changing 3 peadiatricians, none of them were really listening and kept putting me off. Till one day I burst into tears in the doc's office and to calm me down he relented to finally doing some proper tests and ofcourse then they finally realised I ahd been right all along. They then put him on loads of medication till he finally had his operation. He still produces too much acid now (at 8), but can no longer throw up which is a big help. The whole thing has made him a fussy eater and he doesn't care if he doesn't eat for a long time as he got so used to being hungry as before he could never keep anything in.

Mmmm, I would have thought that if a child is upset and shows someone the card then might it not be reassuring for that child to be called by their first name? I have made up a little card myself for my son, and it contains his name and address and my phonenumber, and his array of diagnoses, with a basic 'please help and understand this child' on it. I have put it in the NAS' autism alert card folder which also contains more detailed info on autism. My problem as yet is, he does not want to show it to anyone, so how could it be used?

Good point there Paul. We too had problems with the taxi firm years ago, and when we complained to the LEA they simply ditched them and they found a much better company!

My son has been taken out of language lessons due to his anxiety. He spends the time in the learning support unit instead, where a LSA helps him with his homework. Any homework that does not get done during those hours, he does not have to do!. Homework was a major problem for us, and it sounds like this is the case with your son as well, so maybe that might be one to ask for: no homework!

My school refused to statement as well, even though I officially requested it. I finally contracted a solicitor who managed to get the LEA to take note and we are now on stage one; considering it took me a year to get to this stage, I am quite pleased!. The solicitor also threatened legal action to social services who were completely ignoring loads of official requests for assessments, and it seems like they too are now sitting up and taking notice, though they're still not doing things according to those guidelines, but my solicitor has made them well aware of that.

Thanks! Big brother is now expecting them for his birthday! You've made him happy! Which is double-great, as normally his brother's AS means he misses out on so much, but this time, it is actually giving him something!

Thanks. I'll have a look through those links immediately after leaving this message. I actually had asked my pain management consultant about it as well for myself, but he basically said the same as the GP. BUT in many other threads people say that they have managed to get their consultants AND many their GPs to prescribe it so if it is not mentioned in this 'holy' book of theirs, then how did you all manage to convince them all?

I've asked my PG to prescribe my son melatonin, but she will not as she has never heard of it and it is not in her book. She did say that she would read up on any information I could supply her, though this would not mean that she would feel happy prescribing it. So what I need is information on a scientific/medical level regarding melatonin, that would convince the GP it actually exists and is worthwhile prescribing (for both my son and myself as I am currently on some tough meds for sleeping). Would anyone have any links or info? Thanks!

Mirry, One thing at the time, remember? Maybe you can put those horrible DLA forms aside for just now, till you get the school sorted a bit more. The payment will be backdated to the date you requested the forms anyway, so whether you fill them in now or in two weeks, it won't matter for the payment. It will take a little bit of today's pressure off though! Do take someone with you if you can when visiting the school! If you don't know anyone personally who can help, try a local parents help group, carer's support worker, or a parent partnership person. And yes, dealing with one person at school (preferable as high up as possible, I myself have 'attached' myself to the deputy head of my son's college) helps a lot, and keep pestering them, again and again. Don't worry about what they think, they'll help you just to get rid of you in the end, but at least it gets the job done. (Sod them for the rest ) Remember too, it is still very early days and school should realise soon what he can and cannot do (well, some of it anyway) which should put them to think. PE, oh yes, how familiar that all sounds...long live the shorts eh! As for detention, my son had one once for forgetting his PE kit several times, and this was held during lunch time which meant he was late in eating his food. He is diabetic!!! So I wrote them such an angry and upset letter that I don't think they'll ever dare to give him another detention again! It provided a good opportunity to make some issues clear. My son doesn't like to use a school locker as it means he has to run from one end of the building to the other to pick up his stuff and then back again to the lesson. I have a copy of my son's timetable and check with him in the morning if he has all he needs (like that PE kit etc). In the beginning I packed his bag for him but after some time he began to do it himself, bit by bit. You could also use a list that mentions which items he needs on which day, that he can tick off. I.e. pencil case, maths book, calculator, PE kit, history notes etc. School should help make a basic list, as they know what is needed and then add to his home-school book if there is anything else he needs to bring (the amounts of times he didn't have something with him because I didn't know as I hadn't been at the lesson...) Dont' forget to take care of yourself too!!!! When he is at school maybe there is a chance to put your feet up, take a bath, visit a friend, or whatever, to keep your own life and morale up and refresh yourself ready for when he comes home. Councelling might be useful also.

My NT son of nearly 15 does very much the same including the physically manhandling him, though on the other hand he can be the complete opposite and is then such a darling and soooo helpful! But yes, he does get very fed-up with this, his 12 year old AS and ODD brother gets away with severely bad behaviour, and to him, it is all not fair! His younger 8 year old NT/ADHDbrother is now feeling the brunt as well, as he has to take care of his 12 year old AS brother while still being so little (for instance when they go to the gents together when the disabled is not available) or this morning while I went in to see the doctor by myself and they had to wait in the waitingroom, my 8 year old had to be in charge and deal with him. I find all in all my NT boys are geting a very raw deal they have to deal with so much, they have to take on so much responsibility, I never have a tenth of the time available for them as I have for their AS brother, and any conversation it is 'he this and he that'. We can't go out and enjoy the things we want to do, we often can't even have a simple conversation, etc etc etc my NT sons are missing out so much and I feel it is very normal for them to stand up and say 'enough is enough' or simply to express their disapointments and aggressions.

Am awaiting with abated breath!

Great news and very inspiring. I have only just started on the road to statementing and have heard so many negatives about it that it is great to know it is actually possible! Enjoy that wine but beware the hangover! By the way, where DO you all get those wonderful smileys from, they're not on the clickable smilies list?

First, I would not allow your son to go to school till his care is sorted. His medical situation is a life-threatening one and constant care needs to be in place before it is safe for your son to be there! And by the way, don't forget that this includes the time that he is transported to and from school i.e. on the school bus. Second, if you don't seem to get anywhere with the people you meet tomorrow, go straight to the headteacher and refuse to leave till he/she has talked to you and agreed on a clear plan of action. You by-pass anyone who seems to be 'in your/your son's way' that way, I am telling you from first hand experience it works and saves a lot of time and grief. Try to tackle one problem at the time, so it doesn't get too overwhelming. I have just finished my own son's DLA forms and would be happy to send you a copy of what I filled in. Saying that, I haven't had the result (from the DLA people) yet, so don't know if it is good enough, but I have had loads of experienced people look at it and they all say it is very good and clear. My son is 12, has AS, ODD, mild dyspraxia, dyslexia, and has insulin dependent diabetes. He has an appointment on Tuesday with the doctor to check if he has rhinitis as well as he always suffers from a blocked nose and sneezes loads and loads (bit messy that one). Although 12 I often introduce him to people as being a 2 year old toddler in a 12 year old body with a 16 year old brain. A combination that is not very helpful... Anyway, I think there are quite a few similarities with your son, so you might find it useful. Let me know! Have I mentioned his depressions yet... and NO he does not like to be told off or given an order. I find suggestions work better (though obviously they aren't always followed, but then, neither are orders). I.e. instead of saying 'please change your pyamas '(as they stink too much by now) I might say 'don't you think it is a good idea to change into clean pyamas some time?' This saves a lot of tantrums. What I am trying to say is, instead of telling him off, might it work better if you said something like 'might it be better if next time you asked your sister first, before taking her book out of her hands?' This might make him actually think about what happened in a more positive way, instead of him feeling attacked and feeling that he never gets anything right? He is feeling very insecure , and needs to hear from you that you love him and accept him whatever, loads of times, in words and deeds.

Phasmid and Pleasehelp, Sorry, this is rather off the subject, but those stick insects.... my NT son loves them but his few escaped over a year now...and he still hasn't found anywhere to get new ones from... have you got a couple 'spares' (they do breed rather, don't they?) that somehow could be sent to us???? You'd make someone real happy!

I am new to this, and have only just asked for an assesssment of special needs. Well no, not just asked, but just managed to get asknowledged... Anyway, I don't quite understand all this regarding the parental representation. From what I read here and via Section 8 (useful link, thanks Nellie) it seems to be more of a general picture of the child from birth to now, but it does not seem to cover the actual needs that the child has in school and why they need this statement and extra help. Or am I reading this wrong? It would be really useful if I could read an actual parental representation so I could get a clear picture of how it is supposed to be done. When I struggled with the DLA form I was send several copies of the information that people had put in and it gave me a brilliant starting point and ideas as to how to write it. Would anyone be willing to share their parental representation with me? Thanks in advance!

The latest Tax Credit Update had some very interesting news in it. They have changed their childcare rules and now, for the first time, instead of having to bring your children to the childminder, you are allowed to bring the childminder into your home!!! This is great news for us. Because of my son's AS (and age) it was not possible for me to bring him to a childminder, and that childminder would not have been able to deal with his diabetes as well anyway. So that was no use, and I've had to struggle on trying to work (from home) and care at the same time (which isn't working well at all). However, NOW, I should be able to find a specialist childminder who can take care of his needs, and have him or her come to my house to care for him! I have spoken to the Tax Credits helpline today, and it is indeed true, and also in my circumstances, nearly all the costs will be paid for by them! ***dances around for joy*** ***flops down again, simply too exhausted*** ***thinking: ###### you social services, this might be better than any respite we might finally get out of you after a long fight*** Might this be useful for anyone else?

Thanks Helen. Yes the NAS site has some clear info re respite and assessments by social services, and I have requested to get assessments since May, via GP, psychiatrist, CAB, social care worker, and finally via a solicitor. And they are still ignoring me!!! They're supposed to react within ONE WORKING DAY and have a basic assessment done within one week....yeah right.... at least the solicitor knows all the legalities and should finally get a reaction, but as you say, I don't have the energy and time to deal with anything else, and it is only because I am desperate for some help that I've taken these steps (I've had to put my business on hold already as I can't care and work at the same time). It is like with the LEA assessments (the same solicitor is trying to get both the LEA assessment and the carer's/disabled person's assessments done) we are fully within our legal rights but the State doesn't want to know....

Annie, that means that 8,555 children have special educational needs in your county, but only 1,400 have got a statement... 20% have needs but only 3% are statemented. Helen, I too was told that my son would not be statemented and I have now involved a solicitor to try and obtain one. The whole thing is so stupid; it'll cost the state more in legal aid than if they just statemented him straight away. The whole system is complete re-active and not pro-active. Don't help parents cope but will take children in care once they can't anymore. Don't help kids with problems but will take care of them in jails. Don't prevent accidents but hospitalise the vicitims. I'm sure anyone reading this could think of at least 3 different and relevant comparisons here. Frustrating for those of us caught in the middle! Good for you Helen to become so active. I simply can't cope. As a single parent of three one of which with mutiple disabilites, and a business to run, I simply am not coping as it is, and can certianly not do anything else. Also, my biggest problem always is that I cannot go anywhere without my disabled son and hence am pretty stuck...

My AS son sneezes a lot. He does not have a runny nose, it does not seem to be hay fever, and happens all year round. It is not constant, he can be fine for hours or days on end and suddenly have a sneezing 'fit'. It is really annoying for him and for those of us that get a little sprayed in the process and the sight of those bogeys hanging out isn't too pleasant (no neeed to paint a picture is there ) In my son's own words: "These sneezing fits tend to take the form of a sudden and violent sneeze followed by between three to thirteen sneezes in short succession. Generally I find that I have always got at least one blocked nostril and I find it a lot easier to breathe with a slightly open mouth, especially when I'm trying to sleep. This has happened ever since a chest infection some years ago." Does anyone have any idea how to help him with this? Maybe homeopathy or whatever? Or what may cause this? Do others have this problem?

Don't forget that only those children who actually managed to get a statement are counted. There must be at least a similar amount (or more) of children who have needs but are not statemented

I may be very cinical here, but could it be done by completely refusing to acknowledge that there are children with those needs in the first place, and/or just simply saying that those services are not available? I am not just saying this, I know for a fact that in my county there are double the number of statemented children than the national average, and the schools have been told to cut these numbers down by simply refusing to statement those that ask for them (by reefusing the parents and not supporting them etc).... this has obviously nothing to do with the real needs of the children, only with politics and finance........ Social services is saying a very similar thing, 'respite is a myth, there is no such thing as respite in this county'.... I know it does exist, but only for those with very specific disabilities (guess what... autism is not catered for)...so they pay lip service and do nothing....

My son is very much the same (though he won't be left with anyone so I don't have that break). He can only behave himself (which inlcudes all the rages...) if he feels safe, which is at home with me. Great, isn't it.... meltdowns galore, and yet school has wondered what I'm on about.... I have to say, that at the moment with the holidays he has been much better. I suppose the stress from school isn't there to build up, and he is more like a steam engine at home...letting off steam a little at the time instead of saving it all up and blowing. Will the evening primrose also help boys to calm down? It might be worth a try, but yes he does suffer from headaches regularly?