Clare63 Report post Posted January 28, 2008 People generally describe me as a positive and very patient person, guess that's what I portray but not always how I feel on the inside. Spent most of the weekend writing and re writing my report for the statement assessment, once again opening up old wounds. Today we went to CAMHS and for the first time in ages I left feeling very down and alone. We were late because we could not find a parking space and so were only given half an hour. I am alway fully prepared and have a copy of my notes to hand over, these include what has happen since last meeting, both negatives and positive things, questions I want to ask etc., Anyway I was told I had made an assumption for my son (which I hasten to add he corrected me on) only to be told that I should not make assumptions and be positive and up beat at all times. OMG I work so hard to be positive and encouraging towards my boy, I spend so much time with him, Home Ed'ing (well school work sent home) life skills, encouraging him to go out etc., talking and just being there when he needs me. And its hard 24/7, sadly I snapped back and told the psychologist how dam hard it is and that I have a life too, that all I wanted was for my son to be understood and supported in school, that I was sick of everyne expecting him to change that really they should all be makes changes to help him and how unfair and one sided it all seems. My lad try very ahrd to fit in and do what is expected of him, buts its a struggle and all he is asking is for some understanding and support so he can get on with his life, I don't think that's too much to ask. Ah we also had a debate about the fact that there is nothing between mainstream and specialist school and that aspergers children are expected to change and fit in. I got all passionate about it and said well I will be writing to my MP as I think its appaulling that our kids are not catered for ....whoops went off on a bit there . Well I am home now with a cuppa tea and feeling sorry for myself, guess I will pick myself up in bit and be bright smiley Mum, but for now I just want to crawl under the nearest stone. Clare x x x Quote Share this post Link to post Share on other sites
Mumble Report post Posted January 28, 2008 Clare <'> <'> Swap the mug of tea for a glass of wine later , maybe some choccy, put your feet up (for a while). You are doing wonderful things so sod those peeps for now at least. You know you are doing what your son needs, and you know your son better than anyone. Anyway I was told I had made an assumption for my son (which I hasten to add he corrected me on) only to be told that I should not make assumptions and be positive and up beat at all times. Right . . . So you're supposed to lie to your AS kid right? An AS kid who probably has difficulties with truth/belief and a need to know exactly what's what? Great thinking!!! :wallbash: Quote Share this post Link to post Share on other sites
Karen A Report post Posted January 28, 2008 Hi Clare. <'> <'> <'> It is very difficult not to feel down at times during the statutary assessment process because so much time is spent looking at the negatives.It is not realistic to be up beat all the time....if you were another professional would probably say you were in denial. Karen. Quote Share this post Link to post Share on other sites
smiley Report post Posted January 28, 2008 Clare <'> <'> <'> I would have said exactly the same as you in that position. It's more shocking to hear cr*p like that when you arn't expecting it - expecially as you're having a down day as well. Keep fighting for your little one - you're doing great <'> This evening, find a glass of something scrummy, stick on your faviourite film, find the snuggly bit on the sofa, phone a mate and look after you for a bit. Smileys orders! <'> Quote Share this post Link to post Share on other sites
brooke Report post Posted January 28, 2008 (edited) you know best <'> <'> I sometimes think the "professionals" dont have a ******* clue!!!! Try not to let it get to you as hard as it is. Sounds like your a great mium to your son <'> <'> Edited January 28, 2008 by brooke Quote Share this post Link to post Share on other sites
Guest Lya of the Nox Report post Posted January 28, 2008 (edited) stuff that as good as you me , and other peeps here, we are NOT super mum, dad and carer, as hard as we try it wears us out, we have to help our kids to fit in a wee bit, but the world has to bend a wee bit get on that sofa get out the chocccccccccy, and be clare <'> <'> <'> <'> <'> <'> Edited January 28, 2008 by Lya of the Nox Quote Share this post Link to post Share on other sites
Bagpuss Report post Posted January 28, 2008 <'> <'> <'> There will always be times when it becomes overwhelming.....this is one of those times. Don't try to snap yourself out of it....take your time, do things which make you feel like "Clare" again, ride the storm.....you will come out the other side to calmer waters <'> Quote Share this post Link to post Share on other sites
Flora Report post Posted January 28, 2008 Clare <'> I've had many moments feeling like you do... this past year has been a roller coaster. When I feel like that I tend to switch off the computer... put on my pyjamas and get everyone settled for the night then lose myself in a good book or a dvd, or some entertaining drivel on the tv... A good night's sleep and then you'll wake up refreshed ready to fight another day. Try a hot relaxing soak... and if you have trouble sleeping... melatonin!!! I'm a bit naughty and sometimes have one of bill's melatonin, sends me into a a deep dreamless sleep. You will have days of feeling discouraged, days when you feel that nobody is on the same page as you... My solution, apart from the above, is to 'smoke them out'; Ask the difficult questions; take them to task over areas of confusion and contradiction. If they think you're wrong in what you say, ask them WHY they think you are wrong; and when appropriate ask to see the written policy/evidence etc to back up what they are saying. The last time I was at CAMHS I just got fed up of the cryptic conversations we always seem to have... so I just asked out right 'are we on the same side? ie, are you as keen as I am to ensure that we get things right for my son?'... it obviously worked because within two weeks I was in receipt of an extremely supportive bit of evidence written by the child psychiatrist. It may not get us what we want, but it's certainly put a spanner in the works for the LEA. Hope this helps Flora XX Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 28, 2008 Your brilliant wonderful people, thank you for your kind words of support, faith and encouragement. It means such a lot. <'> <'> <'> Think you are all right, need to go spoil myself this evening, but its so hard to switch off, think I'll start by leaving this wondeful forum, be it just for tonight. Will light a few candles, get my pj's on after a nice soak in the bath and just chill out. And hopefully be back to my usual self with vengance tomorrow. <'> <'> <'> Clare x x x Quote Share this post Link to post Share on other sites
dooday24 Report post Posted January 28, 2008 hi clare. hope u r having a nice relaxing evening u deserve it u r a gr8 mum and would do all u can for him. they r so ignorent these proffessionals. keep fighting hun and dont let them get you down,, i know this is hard at times all you want is wats best for yr child like all of us and they dont listen keep yr chin up and think 2moz is another day thinking of u and sending you loads of these <'> <'> <'> <'> <'> <'> <'> <'> <'> <'> <'> speak to u sonn love donnaxxxxx Quote Share this post Link to post Share on other sites
forbsay Report post Posted January 28, 2008 Hi Clare Just want to send you lots of hugs. <'> <'> <'> <'> <'> <'> Quote Share this post Link to post Share on other sites
Stella63 Report post Posted January 28, 2008 Clare ditto ditto ditto what everyone has said!! We must all stick together and that is what this forum does for us. Enjoy your evening - large glass of something nice and lots of deep breathing!!! Stella xx Quote Share this post Link to post Share on other sites
JsMum Report post Posted January 28, 2008 Hi Have you heard of PALS in the NHS they may be able to help with further support reguarding accessing specific assessments in AS/ASD, My cahms pyschiatrist said he wasnt qualified to diagnose ASDs and so since been referred and on assessments, we have confirmation else where that J does have an ASD but I want a paper diagnosis from our local NHS, to support school, home support, social needs. Its so frustrating to be treated so trivual and this Pysc had no right in his aproach towards you, he sounds very patrinising and unhelpful, I wouldnt certainly stop at this man, go above him and request a proper assessment from your GP, keep noting all your concerns, even if it takes years and he is older which is happening more and more because some people in Cahms have no clear idea of ASDs, just assumsions and outdated beliefes, so dont let this doc put you off trying to get the right support and the right services for your child, schools are still learning about AS so keep going, keep fighting and dont ever give up. Big hugs, and I agree with Bagpuss totally, letting go of our pain is very healing and going with a feeling how ever bad or good, happy or sad it feels is very freeing. JsMum Quote Share this post Link to post Share on other sites
pearl Report post Posted January 28, 2008 Just wanted to add another <'> Quote Share this post Link to post Share on other sites
farfalla Report post Posted January 28, 2008 (edited) Hi hun Haven't been on here for a while, as so much going onwith DS and school, so sorry to see you feeling down, why do the professions make us feel so cr@p! I had it with the senco at the begining, why didnt I KNOW DS WAS DIFFERENT? How and why should I, he is my only child, and like you I want him to have the same as others. geez I could go on! We must catch up for that coffee real soon, and have a good cry and laugh. Big hugs for you honey <'> >< <'> >< Edited January 28, 2008 by farfalla Quote Share this post Link to post Share on other sites
Frangipani Report post Posted January 28, 2008 <'> <'> <'> <'> <'> Quote Share this post Link to post Share on other sites
Bagpuss Report post Posted January 29, 2008 Hope your feeling ok today Clare....and not still sat in bath, like a shrivelled prune <'> <'> Quote Share this post Link to post Share on other sites
KateBall Report post Posted January 29, 2008 the fact that there is nothing between mainstream and specialist school and that aspergers children are expected to change and fit in. I got all passionate about it and said well I will be writing to my MP as I think its appaulling that our kids are not catered for ....whoops went off on a bit there . Clare x x x You are so right here Clare. I wish I had the time and energy to do something about it. But I'm only just having time myself to fight the system - as I'm sure we all are. One day ................ Hope you are feeling a bit more uplifted today. <'> Quote Share this post Link to post Share on other sites
elun1 Report post Posted January 29, 2008 <'> Only just read this Clare as O was poorly yesterday. I hope you're feeling a bit better today Elunxxx Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 29, 2008 Thanks again for being so kind and understanding, it mean so much to me to know I am not alone. Thanks also for the pm's and all the hugs, I cetainly needed those yesterday x x x Was in bed by 9.30 last night, totally unheard of for me. Feeling a little better today and more in control. Connor's mentor came today, she is so lovely and does so seem to understand ASD's she made me feel so much better about things. I told her about yesterday and how I feel so all ASD'd out and she was really supportive. I really feel she is on our side and as she sat and explained to Connor and I, how she had spoken to the EP and that he had simular views to her, they felt the situation was far too fragile to even expect Connor to return to any sort of schooling is the short term. She said it had been agreed and that if OK with us, she would work more on building Connor's confidence, self esteem and independance, gain his trust and have some fun together going out on little trips etc and oh yes do a bit of school work as well to keep him up to speed. Hurrah !!!! someone has finally got to grips with what my child needs. She understood how frustrating it is for me not knowing what the outcome of the statement business would be and like the EP suggested I look at others schools. I mentioned the name of a school someone on here suggested and she said its a fantastic school and that she herself was trying to get her own child in there, makes me think she does not think too much of Connor's current school !!!! Gonna be gentle with myself today and do something nice, even if its just doing a few extra miles with my dog. Thanks again everyone for being here for me. Hugs all round, for those who need them and for those who don't <'> <'> <'> <'> <'> Clare x x x Quote Share this post Link to post Share on other sites
hev Report post Posted January 29, 2008 what is a mentor clare?like a tutor or a befriending person? Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 29, 2008 what is a mentor clare?like a tutor or a befriending person? Well not sure if that's her title but that's what I call her, she is from Children Out of School Team, probably a bit of both tutor/befriender, her role is to prepare kids to get them back to school, at the moment she has a heavily pregnant 14 yr old who she is helping educate via an out of schoolunit until the baby is born and the girl is ready to get back to school. I think its a good service, they work with the EA, Schools, EP's, social services etc., Quote Share this post Link to post Share on other sites
Guest Lya of the Nox Report post Posted January 29, 2008 glad today is better <'> glad someone is listening to you x Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 29, 2008 Thanks Lya and thanks for keeping an eye on me, your like my little guardian angel. <'> <'> <'> Clare x x x Quote Share this post Link to post Share on other sites
llisa32 Report post Posted January 29, 2008 Glad you had a much better day Clare <'> I can imagine how you are feeling and it does make all the difference even when you get one professional finally 'getting it' - your mentor sounds lovely hope things continue to improve <'> Quote Share this post Link to post Share on other sites
Nic m Report post Posted January 29, 2008 Glad you have bounced back, clare nic Quote Share this post Link to post Share on other sites
Clare63 Report post Posted January 29, 2008 Cheers Lisa & Nic, Yeah I am bouncing, but then I guess you just have to. <'> <'> <'> Clare x x x Quote Share this post Link to post Share on other sites
hev Report post Posted January 29, 2008 we good at bouncing back clare arent we we are made of very strong stuff and should be proud of ourselves really <'> <'> Quote Share this post Link to post Share on other sites
Kathryn Report post Posted January 30, 2008 Clare More <'> <'> <'> Good news about the mentor - every little bit of support helps. Stay strong K x Quote Share this post Link to post Share on other sites
