alexmum2
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Posts posted by alexmum2
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This sounds very much like what happened to me, they said our circumstances weren't life threatning so we were not eligable for support ( just like to add I'm suprised you got away with the word Freaking):-)I'm about to complain as I requested an assessment of my daughters needs and was told that because she accesses an ASD specific youth club once a week, I don't beat her, I protect my other children from her, no ones reported any concerns, she's not in special school and "only" has mild/moderate ASD then she won't qualify for direct payments. I didn't ask for direct payments, I asked or an assessment to see what support, if any, was available. She asked me to give an example of her difficulties so I said has not developed age appropriate self care skills. She actually asked me why I can't teach them to her! When she asked me what I'd like to be able to do I said to leave my house with my dd and DS and not need a 2nd adult due to her refusals to walk ad DS only being just 5. Her response was well if she won't walk for you she won't walk for someone else! I replied I can deal with the refusal to walk/meltdown but I can't also keep my DS safe at he same time! I said what about a carers assessment instead and she said I couldn't have one because dd not entitled to direct payments!!! She didn't speak to anyone apart from the autism communication team who she said sit behind her and all they knew was that she went to the youth club so she couldn't be that bad or they would be working with dd so therefore I should go to them for support. I then explained that ACT only support educational needs and only school can refer and that they hadn't referred as under Ed Psych and getting a statement so their input couldn't add anything. She never even read the CAF! She also didn't know that CAMHS don't support ASD as its not a mental health issue! Freaking useless!
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Madeinthe70,s
I have to say I agree with what you are saying . I worry for my son that when i am old he will be on his own and struggling to survive. There isn't enough practical help out there, everyone quotes things form books about aspergers but know seems to be saying this is how to cope with someone who is mean to you or bullying you at work.
They just expect you to get on with it, it's the ivisable disablity. i wish i could say more but I cant find the words.
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OXgirl omg you could be talking about my son, I feel exactly the way you do I am sooo worried that he will end up on his own for the rest of his life. I have tried so hard to try and get him into something in the hope of making some or even one friend out of school ....to list but a few; Swimming classes, Cubs, Scouts, Action for Children ,our local aspergers support group who arranged different activities... nothing worked. he desparatly wants friends but is sooo worried about being used and rejected as thats whay has happened in the past.
He gets on very well with his teachers and other adults but sadly not his peer group; kids at school wont associate with him, as like most kids at school they don't want to be the ones being singled out as the kid that hangs around with the lad with aspergers.
My son also finds it difficult to contect with others like himself, as he says the ones that attend the activities arranged by the aspergers support groups are not on his level , I don't mean to sound as if he is better than others with aspergers but as we all know aspergers is a spectrum.
He doesn't have anyone his age invite him anywhere... I have invited some of the kids he has mentioned that he sometimes talks to at school, back to the house or to the cinema but he hasn't wanted me to do this and says he only was going along with it to make me happy; needless to say he would never get invited to go anywhere with them. It heart breaking
He is in yr 11 now and I cant see a light at the end of the tunnel either.Soraya:
My son too spent his birthday with his dad and me, like your son he would have loved to go somewhere with another friend or a few mates but I know it will never be and like he says to me "it aint gonna happen". He has low self esteme to, because of the years of bullying and tormenting he never understood how to deal with it. I am at my wits end... I saw another lad in our street and several years ago when we first moved here he was about the same age as my son... I asked his mum if he would like to come over and play some computor games with my son but it never happend.
My son has always gone to main stream school and is doing very well academically but socially his life is ###### as he puts it.
Smiley K
I am so pleased things have turned out well for you, I wish there were young people in my son's school who could see his pain and not worry about what others think of them asking him to join them, but sadly there doesn't seem to be anyone. I have asked the school to buddy him with some one but so far they haven't got round to it and like I said he is in year 11! now.
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Dana, i realy feel for you and i do know what you and yoyr son are going through because wehave gone through the same ... my son has been bullied too all his life and doesn't have any friends at school or else where, and unfortunately he doen't have any cousin the same gae so he too is totally isolated. my son was so depressed at one point he was put on Prozac at the ga eof 11yrs! but things will get better believe me
<'> Try contacting Strut or you local county council may have some info on local support groups, it didn't do us much good as my son never wanted to go to any of the organised activities they did during the school holidays but it may work for you... it's worth a try.Does your son go to main stream?
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Has anyone any information about LEA's Transitions criteia?
I have spent ages looking though the internet contacting my County council to find out what support (if any) my son will receice post 16yrs through the Transition team, what i have gleaned it not good for those of us who have kids who are in main stream and statemented 0well not in my neck of the woods that is) apparently you have to have a social worker or have a CAF team involved with your child it's all very confusing if anyone has any other info i would be most greatful in hearing it cos at the moment the kids who have gone to main stream s are falling though the net as regards to post 16 support.
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Does anyone else feel their personality clashes with their 'aspie personality'?
My personality is loud, opinionated, confident to the point of arrogance, and I believe if it wasn't for asperger's I would be the life and soul of the party - the asperger's balances me out in a way I suppose. Being aspie means I struggle socially and don't 'get' fun - this is what bothers me, it’s not things like feeling lonely due to lack of friends, what gets me is that I want to go out and be wild, loud, social, but just don't know how, the idea of ‘fun’ just baffles me.
I feel that a lot of my personality does come from having been an aspie, I was never diagnosed as a child and asperger's or autism was never mentioned. I was mute for a large part of my childhood and I felt trapped, other people talked on my behalf so I believe I grew to be loud and opinionated to make-up for this, I was bullied a lot for being so strange which I believe gave me my strength and confidence...as for where I get the arrogance...well it's not arrogance if I really am that great
In my head I know who I am, sometimes it can come across a little online, but no one else ever sees my personality – and what are we if not our personality?! It's always the aspie characteristics to my personality that they see; shy, quiet, ignorant, cold, anti-social, rigid, unfeeling, boring, self-centred, whiney, weak, and of course people see the meltdowns (uncontrollable crying in my case). This to me is about as far as I see myself as could be possible.
Don’t get me wrong, asperger’s has it’s benefits, as well as the above it also makes me genuine, honest, smart, and most people who get to know me see this too, I’m just saying there is a clash between my personality and the asperger’s characteristics. I do think that although apserger’s seriously influences your personality, at the same time your personality remains separate from the characteristics from asperger’s.
Where as I was closer to a person with severe autism as a child (seriously, I could barely function) I can now pass as an NT, but I still feel trapped like I did when I was mute; I may be able to talk and express myself now, but I can't express my personality! It makes me feel sad that it seems as though as far as I've come in my life, and dealt with challenges, the fact remains the aspie part of me means I won't get to be who I am.
Anyone else have any idea what I mean?
You sound like a real nice person to me.... i have a son who has some wonderful gifts like you... and I know he would make a great friend for someone but unfortunately he has no friends which breaks my heart.... but like you things were very difficult for him in the begining but he has learned to cope know he is 13yrs.
I agree with you about personality ... the personality that people see is not the real one I see thsi all the time in my son .... if only otheres saw what I saw they would see a different person this is why I get son faustrated and sad I feel my son like you is missing out on so much fun.
I had no friends at school and still find it difficult now to make and keep freinds but when I did have friends life was so much better...... i think i had undiagnosed aspergers.... life has been a great struggle for me, but i have survived i think thats all we can do.... but of course live in the hope that things will get better some times they do and sometimes they don't.
If you ever have the time i would love you to tell my son of what your life has been like... how you have coped... just to give him some hope .... but only if you want tto I realise that you may have concerns about this it's jsut i think he would benefit from someone else who has aspergers look on things.
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If anyone can advice me..... I have read the posts on direct payments ad nellie advised bid to go to the jargon buster to get more info on social services criteria for direct payments.
As i have had a great deal of difficuly in getting them for my DS I went to the site and the message I found said the site had been moved or renamed? server error?
Any advice would be most welcome, on how i can find this site or if anyone knows the criteria that social services uses to agree to direct payments.
I have been told such a lot of b...sh.. from my social servcies dept I don't have a clue as to wether it's right or wrong.
They have done an assessment but I never received any comunication as to wether we had got direct payments and nothing to say we hadn't? all we have got is 2hrs support a week from a volunteer group called SOVA?
When i contacted the manager of the 2 sociial workers who did the assessment to find out what was happening to my claim, she said because i had agreed to the volunteer group giving the respite i forfeited my claim?
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hi there liny - lou
what the school are saying is that your child needs extra support; But big (But) they need to get exta support? LEA lots of red tape ect ect . IEP. At all cost's the LEA will try not to fund your childs support! Read: SEN Codes of Practice! you will find it hard to decifer.
At the end of the day the LEA have DUTY to support your son. GET a STATEMENT OF SPECIAL NEEDS! get it through your GP , SCHOOL, ED Phy get a dg
Hope this helps
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KezT Yes i agree with what you say; some agencies I have spoken to today have voiced the very same thing as you, it appears to be how badly you need support or how badly you child needs support, I can't get my head around why it can't be both? Thanks for you reply KezT
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In our area, I agree with Chris - you have more chance of getting help if you word it that it is for the benefit of the child, rather than for respite for you. The carer's assessment and the child 's assessment are two separate things, so you need to be clear which one SS are doing.Did the SW actually do an assessment when she came before? Did you get a copy of that assessment? If so, check what it said - depending on the wording, you might be able to argue that a new assessment is not necessary - that you have tried the voluntary agency as requested and they now need to review the situation.
I am also not sure why you have to wait a year to be reassessed. I woud check this. If they say you can only be assessed once per year, but this was not explained to you at the time of the first meeting, then I would complain, as you woudl have been less likely to agree to try the voluntary agency if you had known that was it for a year.
We have had both done one assement for my needs through the carer's assesment team , and my son's needs through SS; In my assement as a carer it clearly states that I have requested DP and what we would use them for, in my DS case it went into the area of way he needs to be helped by another person ( other than me and my husband) to help in socialise with differnt people in different situations.
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My last word on this is that the impression is being given that funded respite care is widely available to the parent of children with higher functioning Autism. I just do not think this is the case.The post referred to above (Direct Payments respite care) has had a total of 21 contributors over 6 years, and not all about this subject.
Chris I didn't say all these people are getting DP i said MOST. I have also been on other ASD forums and the general feeling is that DP should be offered to every one in need, wether they are carers of children with special needs or adults themselves. It's a way for people to take control over the care they need and how they would like that care to be used, or in other word what they would use DP for (respite, baby sitting support during social outings ect.) and not left in the hands of SS, where the choice is not yours on the care you need when you receive it and how you recieve it.
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Hi Chris if you go to inportant topics at the top of general enquiries there first post says Direct Payments respite care, I have read the post in this topic and there are an awful lots os people getting direct payments for exactly what I need them for and what your wanting them for.
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Hi chris form what i have read on this suject today it's for both, it's not healthy for my son to be tied to my hip and it's not it's not good for me to have him there. As we don't have any family to speak of he gets no other interaction except with my husband and me, like i have said there are a lot of people on this site who use DP for exactly the same reason we are trying to get them for.
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At the end of the day i feel it all boils down to money! At the moment our LA are trying to stop statementing! so what chance to i chace in getting a few quid so i can pay some kind person to take my son out.
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Thanks Sally, yes to day i have phoned the LA SS and tried to gets some answers as to who I need to speak to as to why I have come up against a brick wall in getting my son DP. At one point I was talking to a person in the SS team for my son, and asking her for a name or contact number of any one in SS who could advise me, but all she kept saying was that she was business support and didn't have that information; I said well your not very good at business support if you can't even find the name of some one I can speak to or even put me through to some one else who may know!
But i will keep trying to find out who the disability discrimination perosn at the LA . eveything i have read about DP on this forum more of less says that our child and anyone else with a disablity has the right to direct payments if they are found to be needed.
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I have just looked at caol's links about DP and read these posts and it semms to me that LA's at the end of the day decide wther or not to give direct payments, as i applied for our son in Nov an assement was done and i explained that all I wanted was fro some one to take our son aout once or twice a week and for my husban and me to be able to go out together once in a while as we haven.t been out together for several years as we have no family or friends to babysit.
They said that they would do an assement and persueae me to use PAYP and SOVA 9which is a volunteer organisation)! i unknowingly agreed to do this ( as i didn't want to appear difficult) unfortunately my son has only been on an excursion with the PAYP worker twice in 4 months!
I explained that this service was not full filling our needs they said another assesment would have to be done and that one couldn't be done for a year!
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thanks for your comments, i have just had the social worker on the line, (what a coincidence speak of the devil))she has told me that during my assessment of needs for our son it was agreed that we should use PAYP and SOVA, but i explained that this simply wasn't working as our son in 4 months has only had 2 outings with the PAYP worker and is just isn't good enough! I want a regular contact on a set day at least once a week.
She then said that another assesment would have to be done to get DP and that could not take place until next year! direct payments were discussed at the first meeting when an assement was done where I explained why I wanted them and that that that is what i wanted, but like I said they insisted that we should use the PAYP and SOVA (which is the volunteer secter) before DP could be considered.
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Does anyone know how I can delete the same post i mistakenly put on several times?
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I applied for direct payments way back in Nov 09, had a visit from a social worker who suggested I go down the private sector route first, whci i agreed to do.
unfortuneately the volunteer worker has only took my son out twice in this time, for an hour each time. on the last occations she upset im by makeing negative comments about his weight and other things (which i don't like to mention) he is a very articulate lad and is on the upper end of the sectrum.
We don't have many family members who we see regularly and therefore i needed him to be in the company of some one other than myself and his father; we are tied at the hip and it's not good for him or me to cut a long story short , i complained to the student social worker who did the assement and explained that we felt that it wasn't working, and could we continue with our application for DP, she became quite obnoxious and s basically she it was our son's fault it han't worked!
We then received a letter to say that they would not be putting us forward for DP but would continue with useing SOVA for support, in other words another volunteer worker would be appointed to our son!
Does anyone know how I can insist on the direct payments route? I seem to have come up against a brick wall, when ever i try to contact the SW she is never there and doesn't return my calls; I have put in a complaint explaining the situation but still nothing happening.
All we are asking is for our son to have contact with another person who could take him to the cinema bowling anything just once a week! we have tried other things like scouts judo ect but he finds these activities difficult.
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Hi
this may or may not be of help but if i were you i would make an appointment to speak with the head of special needs at your local county council, get in touch with parent partnership and arrange with them for some one from there to go with you for support; take your son too if you cannot find child care for him; list all the things that have gone wrong so far with the schooling of your son and list the things you would like to happen so that your son can learn in an environment where he wont be so traumatized he has to chew the skin of his fingers! My D's was the same, he was so unhappy at one school he went to, that is what he did! Hope this is of help.
I understand where you were coming from when you took your son out of school as I have been there many times, I've felt so frustrated that I wanted to do the same as you. And nearly have, but what i did was move him to another school, it was a worrying decision at the time as I thought that it would be a case of jumping out of the frying pan into the fire but luckily it worked out OK , thats not to say there weren't problems but they weren't as bad. i hope this is of some help, it may be worth trying to just get in touch with your local parent partnership and explain the situation to them first, they may come up with a better solution. You can get there number from your county council.
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This may or may not be of help but if i were in your position I would try and make an appointment for an interview with the head of special needs at your local county council and also contact parent partnership to get some one from there to go with you.
If you can not get child care for you son take him along too! Make a list of the things that have gone wrong with the schooling of your son and also the things that you expect from the LCC to educate your son in an environment where he can learn with out the trauma he has been going through of late.
It really struck a cord with me when you mentioned that your son chewed the skin of his fingers! thats exactly what happened to my son too! at the time I thought he did this because he was bored, it's only many years later that he told me he did this because he found it very difficult being in a class of noisy kids and with a teacher that was a bully. For a long time I kept him at this school until the teacher was verbally rude to me ; it was then i realized that every thing my ds was telling me was true. I moved him after that to a different school were he did well and was happy.
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Just like to say thanks for all your replies I do appreciate them. Even if i may not agree with them all.
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Sallt44:
Yes i have sent an email (several days ago I'm waiting a reply) to BIBIC explaining and outlining the situation we are in at the moment.
Kazzen 161:
To answer your question he should be in year 8. Atthe moment the school we would like him to go to has around 900 kids, I would assume that there are 3 or 4 year 8 classes, and no i have not deregistered my son yet from his present school; he is away from the school on medical grounds. depression anxiety ect.
HT's in mainstream don't usually have much to do with SEN kids in my experience, so I'm hoping that if my ds does eventually get a place, then he would be left in the care of the SEN dept and SENCO of the school, also in recent years the school has come up as one of the top ten schools in the county not just as a main stream but for their SEN support. Another reason why I would like him to go there.
Unfortunately the school is on the boarder of 2 counties and 40% of the schools intake is from another county and some of those children do have SEN but because the county they come from do not statement their children it was implied by the HT that the support that my ds would get would be used for those that don't have financial backing.
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Frankly, a piece of paper (the statement) will not change the attitude of this Head and I would have taken the hint and gone elsewhere. You will have the same difficulties of problems not being addressed as before.The three criteria you quote are correct. They could possibly say 1. but the LA won't let them say either of the other two without a bit of a fight.
We are not talking about a peice of paper here we are talking about the school cherry picking! and the fact that if my son felt good about the school even just walking around that speaks volumes to me! irrispective of what the head says. Excuse me if i misunderstood where your coming from but I'm not going to be bullyed by anyone least of all an over bearing head. The question i was asking was how can any of the criteria outlined be used in my ds case; i personnaly don't think they can. I was asking if anyone else had been in this situation and what the out come was.
ASD Son bullied and I have be humiliated by bullies mother
in General Discussion
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This almost sounds like our story Yvonne27, we struggled for years with schools , who like you say are only concerned with self image! I was also bullied by ingnorant parents who know nothing about the condition.
I changed my son's school after he was bullied several times and also tripped over by some boys which caused him an injured knee cap; he never told me about it until I saw him struggling walking , he didn't want to make a fuss! That was enough for me he wasn't going back.
In the end I went to my doctor and he signed my son off school with desperation and wrote a letter to the school.
In-effect this was assault on schools premisses in school time! However at the time I never realised this... we complained but to know avail. They took the side of the boys that injured my son saying it was just boisterous behaviour!
He then was provide private tuition at home for a few weeks by our LA then went to a small place which taught kids who were having problems at school like my son however this was only for 6 weeks.also provided for by our LA.(he loved it there). we then had to search for a new school.
We did eventually find a school he said he would be able to cope with and they did provide proper support... but the bullying still continued when the support wasn't around..
he made it through though.
The only advice I can give is go to your GP and also your LA they have a duty of care to provide safe schooling for your son.
Good Luck