Annea

Sending loads of positive vibes and luck your way!!!! It is so wrong that we have to got to these lengths to get what our children need!

Hi Kizzy, don't feel guilty about 'applying ' for it, in fact you have to tell the tax credit offices of ANY changes of benefit or other circumstances, it just so happens that on this occasion it pays for you to tell them about the changes! It made a big difference to our income... Enjoy a few treats... Anne

I think the problem with the whole world of Asperger Syndrome, is that there is no 'one way' that our children are.. I found I was dismayed that the young girl was so troubled and was treated so badly. I think I think that I thought this because my daughter isn't like this, I am aware that her friends my have watched this and will not have the maturity to understand that this script is not 'typical' (I do of course understand that some children are of course like this and some parents will be relieved to see the truth of their childs life portrayed) My daughter would most definitely have thought about the 1 second becoming 35 seconds.. but she never would have been able to say it... As for the teachers! well I thinkt hey were portayed abominably.... but as you know from some of my recent posts, there are teachers like that in our schools today... I can think of two in my daughters school who act very similar to two of the characters. It's a drama, but dramas carry a huge responsibility and the BBC must understand that this programme will definitely colour peoples view of A/S... many of us fight bigotted and uneducated people evry day of our lives, I hope this will not make it worse...

My husband and I watched this together and have very mixed feelings. On one hand I feel appalled that they played up the violent side of things and did make her look extremely menacing. The programme did make no mention of her struggling becuse it was a new school with violent and initmidating teachers. On the other hand it did highlight just how ignorant the education system can be, and how ill prepared many teachers are to teacher children with A/S. As for her very astute comment at the end, this actually made me smile, as it is exactly what my daughter does to stop people asking her how she is feeling, and she knows she does it for this.... I doubt she would recognize someone else doign it though!!! All in all I hope that the programme balances this storyline, or I for one will not be watching it again! Anne

Hiya, When my dd started in year 7, I asked about transport. My DD can't cope with the noise and hustle bustle of the bus and she is a runner when she gets stressed. The transport manager told me to put her on the bus, and if she runs or can't cope, he will look at transport... After many weeks of messing around, I asked him whether he ws willing to sign to say he takes responsibility for his actions in putting her in unsuitable transport. He then told me he would need a letter from her doctor before he did a risk assessment, I asked him to send me a full copy of his risk assessment, and asked him who would be doing it and what qualificiations they had in deciding what risk my daughter would be in, because of her particular problems... Withn a week he had laid on a taxi.. he did try to put her in a taxi with two other children but this would stress her too as the journey is used by her to psych herself up and wind down after school... she needs quiet... so the paed said NO she needs individual transport, and he has now given up, the yearly reviews that he said would happen, don't . So she is safe going to and from school. IPSEA advised me on this issue, and I would advise you to get someone on side.... the way I see it, it is a legal requirment or us parents to get our kids educated, so therfore someone has to help us to do this if our kids have special needs... Dig your heels in.... that huge journey would be gruelling even for a seasoned commuting adult, a child can do without that pressure on top of everything else. Good luck!!!

Thanks everyone..... it is really rough here just now... the good wishes are really appreciated...

Hi Viper, we were turned down for the blue badge because in this area you need HRM, but I do know in other areas it is discretionary... I think this s one 'benefit' that is so unequal as it depends where you live.. It might be wrth applying anyway? at least you will know how the land lies in your neck of the woods... good luck!

As you know by my recent posts, things aren't good here at the moment.... My 13 yr old DD with A/S has always suffered from lot's of anxiety and meltdowns following school, but today was horrendous. When she got home she immediately went and hid under the bed... when she came out with a bit of coaxing she was so very upset.... She had been in an RE class when the topic was influence and part of the topic was smoking especially passive smoking.... My hubby is a smoker who has struggled several times t give up, he doesn't smoke in te house or around the kids but she was so upset and angry at him because of what she had been told at school.... The more worrying bit though was after she had told me this she started sobbing again, say over and over " everything is wrong, so wrong" this went on for well over an hour and she was struggling to vocalize what she meant..... then she described that she is always worrying about bad things, constantly thinking about the bad things going on in the world,,,, starving kids, poor people, war, etc etc etc.... she told me that she never stops thinking these bad thoughts... she said everhtng that happens esecially good things makes her think of terrible things.... This is something that is so far from my experience with her and it really scared me... At one point I thought she was going to need to be sedated as she was so hysterical, it got so bad my hubby actually put the dictaphone on, as we thought we might need to remember some of the things she was saying to tell the doc etc... Has anyone got any experience of this sort of behaviour? it just doesn't seem like AS behaviour to me? I have actually put her to sleep in my bedroom tonight as I was so scared to leave her with her sister as she was so upset. Please anyone who has any advice, let me know! Thanks

Hi Pumpkin, As it happened I did wrote to the governeors about the difficulties my oldest was having and they didn't even reply to my letter! It is a fairly smallish catholic school, and I wish there was another similar school that I could take them to, but most of the other schools around are much larger and I think this would just add to the probs, and hey wy should I move? I am waiting for the educational welfare officer to come back to me so we will tell you all what the outcome is. Anne

Tha nks everyone..... and thanks Di! Will let you know how everything goes!! Anne

my daughter is always covered in brusies from school and a few years ago, fell off a bench and broke her elbow which needed pinning, she never flushes the loo or wipes herself or washed her hands, but schools don't even notice this.. but how are they goign to know that... Funnily enough last week they walked down to the local church, but dd was given a lift by the teacher, not sure why.... I am goignt o make an apt to see the head and list all the things that dd has probs with so hopefully they will include some of them even if they haven't seen them.... I will also make the senco aware of the probs, as she will probably have to fill the form Di, am still waiting for my dissability key worker I was told last week that the social work dep would contact me in approx 1 week. I am hoping they will be of help. I aso requested the school records last week, i told them they have 15 days to get them to me, they told me that I would have them within the 15 days and no charge would be made for copying! I can't imagine how they would know about her roads sense, but she has very little! Also the other day she approached a dog that was tied up, and it almost bit her, I have told her so many times about stranger danger and road danger etc but it goes in one ear and out the other... It is frustrating isn't it? I will try and get hold of my daughters physio and ask her to write a report for me, her specialist I think is on holiday at the moment, I think I will ring the DLA and ask them if they are going to ask for a medical report.. it seems ludicrous if they don't. Thanks all for you help.

What a time wasting exercize!!! My eldest daughter with A/S never had a form sent to the school otherwise she prob never would have got anything! Will they still write to her specialist as well as physio or will they not bother? She sees the physio twice a week and has seen her paed three times in the last three months so they would be able to give real info.... How frustrating! Thanks for answering me.... anyone else got any advice?

The morning after the first night in our new house we were awoken at 6am by a police woman calling us from our hallway.... after a near heart attack we founf out that our son age 5 had got himself up and got dressed and decided to go and explore his new neighbour hood. Luckily a neighbor had spotted him, decided he was too young to be out alone and called the police..... They were happy we were not drunken or drugged up and that he hadn't been home alone and they said it wasn't uncommon.... This was the second time he had 'left home' the first being before we moved when he had seen signs for the circus and had decided to go and find it.... we always kept our downstairs doors locked but he opened the big window and climbed out!!!! Luckily we caught him before he had gone far at all! We now have battery run windo alarms on our patio windows, our down stairs door AND on his bedroom door. We were so scared he might get out again and get hurt.... If he gets up for a wee in the night his alarm sounds so we know he is up, we then make sure he gets back in bed safely... it also stops him rummaging and getting upto mischief in the house when we are asleep.... The reins or a hand strap sound a good idea if he goes walk abouts whilst you're out and about.... Good luck!

Hi again everyone, can I ask you all... I heard back from the DLA today to say they can't process my application until they have more info from school! If you read my last post you know I am struggling with getting the school to take anything seriosuly, so can I ask what questions the school will be asked? it seems bizarre as many of the care issues such as bed wetting, physio, night splints, etc etc are out of school time, the other things such as attention defecit and behaviour etc, they say doesn't exist even though her physio say it's very apparent. I am also wondering why they will not have contacted either her paediatrician or the physio as these names were both entered onto the form as being able to give extra information... Can anyone shed any light? thanks again in advance (listening to the thuds from upstairs as my daughter gets in and out of bed and runs down the corridor - will she ever sleep?)

Ipsea are representing me at the DRC tribunal as I fall into the fanancial category I just haven't been able to get hold of my rep yesterday since the letters came through... I will try him first as it would make sense to ask someone who knows my case(s) Thanks everyone for your support.... I honestly didn't think I could put one step more in front of the other yesterday..... We were so looking forward to my Middle dd goign to secondary... we were thinking at last a child going on to this school without any problems, no reasons to be on the phone all the time etc.... and now this... it really knocked the wind out of me.... Funnily enough I have since made contact with another parent who is having quite similar probs t me concerning my eldest dd AND it's the same school!! so this makes me understand that actually it might not just be me!

I hope noone minds me posting about my situation... I always seem to be miserable lately, and yesterday I was so upset I ended up having a panic attack! Can I just rant for a bit about whats happeneing at present! My daughter A/S is in year 9, she is bright and therefore the school say that she needs no extra help, the thing is she is so very anxious about school, she struggles with the noise and the hustle /bustle, she can't ask for help in class as she is a perfectionist and can't admit she needs help, if she does admit she needs help she struggles to vocalize her difficulties. She is on SA+ but her IEP's are thrown togethr, I have never been asked to review them or sign them, she issupposed to have a pastoral carer but this has not been put in place, she is supposed to hve a quiet room to escape to but this doesn't exist, she has an alert card that she is supposed to show a teaher if she s overwhelmed, but she hasn't the courage to use it.... She was turned down recently for her statement and we have just lodged an appeal... The head wrote me a letter 12 months ago which told me that unless my dd had a statement then she would get no extra help in school because they had no funding for it. SHe was also down to do two trips one in year 7 and one in year 8, these were foreign trips! She was desperate to go, but the school refused to put in place any extra help for her so she had to pull out twice... we have now lodged and had accepted a claim for dissability discrimination against the school. On top of all this My middle dd just started the same school and was so looking forward to it.... but the first week there she was pulled out in front of her friends and asked why she had a non uniform blouse on, the blouse is white and this is all it specifies in the policy. The next day my daughter was the victim of having chewing gum put in her hair by two kids sat behind her in class, the same teacher from the day before asked her to identify the culprit, which she couldn't do because they were behind her, they were also in the same room as her when she was supposed to identify them! Because she couldn't, she was told that she must have had something to do with it and must have been messing around, so she was punished allongside the two bullies... I was so upset that I rang the form teacher whos class it had happened in, she told me she knew my dd wasn't responsible and didn't know why she had been punished, she told me she would get back to me, but she never did! Yesterday my daughter was in yet another class, when this same teacher came into to see her teacher and asked if my daughter was their along with the other three, she went on to say tat these girls should know that all the teachers in school have been warned about their behaviour and they better watch out! (or words to that effect) I am at a total loss as to why this teacher has turned against my daughter and is I feel bullying her! The education welfare offcier has now become involved and is goign to arrange a meeting t try to sort the issues out. AND on top of all this my youngest dd who is as yet undiagnosed, but who has both mobility and behavioural issues had her first IEP written. The IEP refers to her as 'he' and 'himself' and it has been hastily put together. The school had to fill out an OT form for me, and it was filled in shodily at best, their was no information put on their about her needing extra help in spellings focus group etc, plus personal care nd mobility issues she has. I have now asked for a full copy of her school records, and I am going to apply for a statement, so that I can get her assessed properly. My solicitor is having her seen by an OT and toher professionals. I feel like I am drowning!!! My ex has hinted that I am responsible for making problems worse for my middle daughter, because if I hadn't spoken out this teacher wouldn't be targetting her... I wonder how much more I can take on without flipping totally...... Can I also ask, at an SEN tribunal, can IPSEA represent a person or is it best to ask SNAP? I just don't feel like I will manage on my own... My hubby is good really but he just goes with the flow and isn't really that supportive as he doesn't know what is needed of him.... My goodness, Reading it back I think I must seem like a raving lunatic! Does anyone have any light to shine toward the end of this tunnel? Thanks...

That is great news Di... at least part of Torfaen is behaving itself!!!!! Please let me know if this seems to make a difference to the way she views things. All the best

Thanks Shortcake and Di (who pm'd me) I have now got hold of someone.... Thanks again Anne

Because my eldest dd with A/S was diagnosed priavately, she fell through a gap and ended up with no extra support. I am now wanting a social worker to come and board but how do I go about getting a social worker?? I am in Torfaen in South Wales but when I look at the local council web site it is just a mountain of confusion (to me anyway ) Anyone know how i get in touch with one? Thanks in advance Anne

Good for you for standing up for your sons right to a safe journey! If you have to lend them the seat again, maybe ask them to sign for it? I am constantly t a loss for words to describe the ineptitiude of some of the people who are placed in a position to care for our kids.... I'm sure it's not that they don't care so where does it o wrong, do they get so fed up with the system they give in? Do they get scared by the beaurocracy they find themselved wrapped up in? I too would complain in writing, in fact I now never do ANYTHING to do with my daughters over the phone, unless it is impossible to get it done otherwise, and then I record the conversation. I am so fed up with being told that he or she didn't say this or that!!! Good luck with routing down his proper equipment! Take care Anne

I was told that in my council, you HAVE to take the child into the offices to apply, and they said at 13 my daughter can fill it in herself! I was told that my area will NOT give a badge unless higher mobility,,, my dd gets higher care lower mobility.. Are all forms the same accross the country? Could I get one from elsewhere then get my childs doc to fill it in? It drives me mad... I have on A/S who is prone to running, I also have one not yet diagnosed who has general mobiity probs often in plaster and always falling over. I also ahve chronic incurable liver disease and as such suffer from severe fatigue. I have already been turned down once for DLA so no hope for a badge for me either.... As a family we really struggle but they look at each tiny piece of the picture and make rash judgements on them.

Finally got my new IEP through for my youngest dd not yet daignosed.... what a sham.... it is so vague and half way through it refers to my daughter as 'he' and 'himself' I am so fed up with schools at the moment (srry teachers here) I was waiting for a form to be returned for an OT assessment, it took over a week to be done, and when I got it back it was only half filled in. My child is the perfect child apparently. then my middle daughter who has no probs ended up getting chewing gum put in her hair at her new secondary, she ended up having her hair cut to get the gum out, and she was so intimidated by the girls she wouldn't say which one of two girls did it, so SHE got punished!!!! as the teacher said their was something fishy going on.... Yes you silly bat it's called bullying!!!!! I sometimes wonder what these people are trying to prove with our kids! Does anyone else sometimes want to shake sense into some people!!!! Of course this is only my own experiences and I know there are good teachers out there... it's just with 4 kids at school and I am still looking for one! Sorry just ranting!!!! Need to let of steam sometimes!

Thanks both, I am not convinced we will win becaue although the school are definitely in the wrong, the wording of the claim means that in ur case the school may have a loophole BUT I will fight them as my dd now in year 9 has been discrimnated not once but twice for the same thing believe it or not! Will not go in to details as I know their are people here who know the school my children go to... but it is sooo wrong when a head will stand and spout in the prospectus about equality and caring until the time comes to put the effort in and then it's suddenly someone elses fault. I am waiting for a date and will let you know how it goes!

That is great to hear you has such a lovely time..... One for the 'happy memories' box ! Anne