Carol Report post Posted July 24, 2005 I posted this on the side by side forum - & got good support (thanksMinxy & friends) - I felt I didn't want to post here as I feel like all I have done is moan & you must be getting so sick of me going on about my problems - but I am not being as rational as I can be so please forgive me - any insight or advice from here is more than welcome. ( & thanks Nellie for al your support) had an "informal" meeting at social works offices on Wednesday & at first after the meeting all I could do was cry & feel totally distraught - but now I am getting it into perspective and putting my boxing gloves back on..... quite a long meeting ( won't bore with all the details) but one thing that came up was that the psychiatric day unit (that my son goes to on average a Friday morning and just over an hour on a Tuesday) have said that they feel that my son has seperation anxiety about me ( he will be 14 next month) I did not say anything as I had heard the phrase - but not sure of all the implications - so looked it up when I got home & now realise that they were actually implying that the reason my son can't cope with school & I have problems getting him to the psych day unit is not down to him not wanting to go - it is about him not wanting to leave me!!!!!! - what total BS & it just makes me so unhappy that yet another professional resource completely misunderstands about aspergers & how it presents itself & - he is totally happy staying with his dad - goes to his nana's for weekends, even when we visit Manchester he is happy yo be left with my SIL - he is great with people who love & respect him _ I work weekends now & he will say goodbye if prompted but more interested in Runescape - but really hacked off that they could try & rationalise his problems by blaming me. They also said about my mental health & then the other thing I was pointing out was that (as we have no respite & I am the primary carer) that I worry about what would happen to my son if something happened to me & the person from the psych day unit said - "why you are not thinking of doing something are you?" they also made a disapproving remark about me using bribes to get him to the day unit - so once I took stock & realised that the only time I have to resort to incentives to get my son to co-operate is when it is school or the psych day unit - so have told him that from now on the pressure is off & if he does not feel up to going to either I am not going to pressure him into going - & he has been so calm since I told him that I know I am doing the right thing ( we are waiting for a desicion to be made re a special school placement) & I just feel bad about making him do things that make him unhappy. There was loads more that came up at the meeting & these are just some of the things that are stressing me out - thought I would share & see if anyone else has had this "label" attatched ? lol no pun intended. the bottom line is I have always bent over backwards to meet the so called professionals more than half way - but I am just not playing anymore & see how they like it when Carol is "not so nice" Carol Quote Share this post Link to post Share on other sites
nellie Report post Posted July 24, 2005 Carol, My son suffers from separation anxiety?.. he suffers separation anxiety when he is put in any situation where he knows the carer cannot understand, motivate, respect and look after him. Maybe you could point out to the professionals that your son is not anxious because he is separated from you but anxious because he is being looked after by people who don't understand him. In other words he does not feel safe and secure at the psychiatric day unit. Nellie xx Quote Share this post Link to post Share on other sites
oracle Report post Posted July 24, 2005 100% agree with Nellie. I was told that my son aged 13 also had anxiety seperation disorder.Infact your post could well of been written by me 5 years ago. I became quite worried because they were asking very probing questions about me and our family. I now know that David was the way he was because he saw me as his facilitator and someone who understood him without him having to say a word. In short I filled in the blanks for him and made an uncomfortable enviornment more bearable.He hated going to any appointments because he hated going anywhere he had never been before. This was because he was not in control of the situation. By this I mean he could not predict what would happen and that made him feel physically ill.This is VERY common for anyone with ASD. Only wish I had known that at that point. I was told to drag David kicking and screaming from the house to these appointments no matters what. I did and we eventually ended up on 48 hour suicide watch. It made the 'professionals' feel in control and powerful because they were calling he shots. Mentally it almost cost me my son. I think that the BIG issue here is were the Social Workers at this meeting you attended ASD specific trained? Most Social Workers have probably had a couple of hours training a day's at the most. So most know nothing about our children. It's taken me 18 years of living with my middle son and five years of hard work post dx to understand both of my kids with ASD and I live with them 24/7. Please please ask someone if these people were qualified to be dealing with you and I do not mean their Social Worker qualifications. I would also question the people dealing with you at the psychiatric day unit. Is this unit ASD specific? If you do not ask these questions then no one else will. If you do not feel comfortable asking this then find a support group of Carers Centre who can advocate for you and help you. I really can not stress enough that you need help here and someone to ask these questions. My son is now 18 and can hold his own without 'mummy' being their to hold his hand, as it was put to him. But he still sometimes needs me to bridge the gap for him. But he can now speak for himself most times. He is also out going and had confidence in himself. That is something that comes with time and the input from people who really do understand. This is very close to my heart as you can probably tell if you need to talk about this any more or just want to vent please feel free to pm me. Carole Quote Share this post Link to post Share on other sites
Mother in Need Report post Posted July 24, 2005 Hi, my experience with social workers so far is that they have no training at all re any type of medical problem, and do not want to understand either. I have found it real scary to talk to those people; without training they are there to give us 'advice' and if we don't do as they say............they've got too much power based on no knowledge............... as Carole wrote, dragging her son kicking and screaming on their orders, is just not on. The same with doctors in hospitals as well, doing bloodtests or anything to do with needles and our kids get so scared, but they will continue even if it takes an hour of agony for them, with no regard to their feelings. I think it is all totally wrong. And Carol, for me, bribery works sometimes and when it does, I use it! Why make my son extremely unhappy for hours, when he can't help himself anyway, if I can make him happy quick and keep my own sanity in the process, and thus remain fit to care for him? Happy v unhappy. I know which one I prefer! Quote Share this post Link to post Share on other sites
Carol Report post Posted July 25, 2005 thanks very much for your kind replies. as far as asd knowledge goes - apart from the ed psy ( who was insrumental for my son finally getting his dx) - noone from the psych day unit or social work has any specific training on asd & they have often said that they take their lead from me as they acknoledge that I am the expert there ( I know more flippin contradictions) that is why I feel so let down & my concern is now that if they have me pegged so incorrectly - ie hinting at my mental health & enquiring if I am suicidal - how wrong have they got my son - well apart from the glaring error of this seperation anxiety. Are they just applying behavioural management theories that work with the other chidlren who attend the centre. Carole - thanks so much for your post - I read it out to my husband and you have it spot on - my son trusts me to do the best for him. Mother in Need - you are also correct about the bribery & putting them through so much hassle for such trivial ( to them) things. the main thing that is going to make me determined is that the change over my son since I have told him he is no longer going to be cajoled, pleaded, bargained with to get him to the psych unit & the school - he is so calm & we have had no incidents since. In fact we have had some small breakthroughs with him being willing to try new things ( he has now started making himself (& us) cups of tea) - and tried pepparoni pizza last week my concern with this is that the more he stays in the house & if we do get this residential placement - will it put him under more intolerable pressure to adjust to a new environment with so many changes? - or is letting up the pressure going to be the best thing to help him prepare for being in a calmer, asd trained environment? oh for a crystal ball Carol Quote Share this post Link to post Share on other sites
Tez Report post Posted July 25, 2005 the main thing that is going to make me determined is that the change over my son since I have told him he is no longer going to be cajoled, pleaded, bargained with to get him to the psych unit & the school - he is so calm & we have had no incidents since. In fact we have had some small breakthroughs with him being willing to try new things ( he has now started making himself (& us) cups of tea) - and tried pepparoni pizza last week my concern with this is that the more he stays in the house & if we do get this residential placement - will it put him under more intolerable pressure to adjust to a new environment with so many changes? - or is letting up the pressure going to be the best thing to help him prepare for being in a calmer, asd trained environment? oh for a crystal ball Sorry haven't got a cyrstal ball but we are in a similar position with our son. He's been out of school since April due to the stress it caused and for a long period didn't want to leave the house but things are starting to improve here. My son's Deputy Head intoduced us to one of his former pupils who had experienced similar problems and who went on to excel at a school that could more easily meet his needs. This boy told us that he needed 6 months away from any school and any social pressures to conform to being something that he wasn't, he needed to be allowed to "just be". He introduced my son to some other AS teenagers who had experienced similar problems. They all said the same thing, they needed a long period of time just to recover from the inappropriate socialisation pressures that had been put on them. All of them had turned their lives around when they had just been allowed to be themselves in environments that were right for them. Like your son, our son is a different child now the pressures of school have been taken away, his self help skills have improved and he now wants to go out to places such as Scouts again and although he finds it difficult he is working out his own strategies for coping with things that he wants to do. I think you know your own child best. Just go with your instinct and although it is good to listen to other opinionsand consider them, try and retain control and make your own decisions about what is best for you all as a family. I hope that you feel less stressed soon. It's a pity that no-one seems to have offered you any constructive support to lessen your stress. Try and get some space for yourself and if you want to talk or moan about anything just PM me. Quote Share this post Link to post Share on other sites
Guest flutter Report post Posted July 25, 2005 sounds like they do not really know what they are talking about i have recently had same thing at school, and it knocks you for six, but you are one strong woman!!!! and you are the best person to know how your child is no matter the age!!! All kids get like this when stressed for goodness sakes, whether or not the have specail needs people who know nothing but think they know lots, take great delight is piling blame onto parents keep those boxing gloves.................... ooh and teach me how to use them <'> C x Quote Share this post Link to post Share on other sites
oracle Report post Posted July 25, 2005 (edited) Once I had stopped dragging David to sessions at the Child and Family Unit and also told him that school was off the agenda, because Child and Family were making that a major issue, he did slowly begin to recover. I totally agree that in the right setting our kids can and do do well. Sadly for David there was no right setting because for him his dx came too late, and more importantly I believe, at a time when I had very little knowledge of his condition. At that time I had lots of 'gut feeling' but no knowledge to back that up with. If I were fighting his corner now then maybe Home Ecucation would not be my first choice as David is a very able young man. But at the time it was withdraw him from the system lock stock and barrel or lose him. I withdrew. He started to unwind and relax and that was when we seen a huge difference in him and I knew that we had been right. The worrying thing is that nothing appears to be changing as parents are still being handled by professionals with no understanding of the condition. Carole Edited July 25, 2005 by carole Quote Share this post Link to post Share on other sites
ceecee Report post Posted July 25, 2005 (edited) From my experience people with aspergers tend to lean and rely on one person causing the asperger traits to lessen when being with that person. Edited December 3, 2005 by ceecee Quote Share this post Link to post Share on other sites
~Jonathan~ Report post Posted July 25, 2005 (edited) I've been told I have 'abandonment issues' just like Billy Connolly apparently, he's talked about this on stage. Is this similar to separation anxiety? Edited July 25, 2005 by ~Jonathan~ Quote Share this post Link to post Share on other sites
