Can anyone tell me if it is possible to deal with an endless succession of poorly informed, unsympathetic and unprofessional doctors, speech therapists, teachers, friends and relatives without killing somebody??!! I swear I am going to end up punching someone before long, I truly cannot cope with these people anymore. I've pulled him out of school (due to their constant complaints about him ignoring them - have you read the report on his hypersensitive hearing that I gave you??). The speech therapist finally offered him three one-off sessions which we have had to wait a year to get - when I told her I'd been doing it myself at home seeing as she'd had no input she told me that I was risking his development by refusing to let the 'professionals' do it. His paediatrician has refused to do a formal assessment as he says he's not 'compliant' which therefore means he's had no access to occupational therapy or any other kind of input and if one more person tells me I should be glad he doesn't talk so much because their kids never shut up I am going to lose it!
I'm sorry to rant on so much but I used to be a nice person! I used to be calm and serene, empathatic and patient. Now I snap at people constantly, can't even be bothered to be polite anymore, swear instead of talking calmly and I've just cut myself off from everyone. The only person I'm always nice to is my boy (thank goodness) but most other people around me just irritate me and I can't even be bothered to talk to them. I recently met a guy who seemed really nice - four dates in and I was complaining about the lack of support for my son and how hard I was finding it to cope (after he asked me if something was wrong) and he told me to stop whining! Does anybody understand how hard it is?
Please can someone tell me that they have dealt with this for years and they haven't killed anybody?! I'm laughing now as I write but I really do want to get hold of these people and spend a whole day just slapping them about! I never used to be like this!!
It's not easy when you don't have people around you who understand what you are going through. Things never look as hard as they are from the eyes of another person. It's good that you can come here and vent because it probably spared someone that much deserved slap you describe.
I have found myself to be less involved with old friends and making new friends with mothers of autistic children. Who understands better than someone in a similar circumstance. I don't know if it's the comfort of knowing they are not judging my son or my parenting, or if it's the need to not feel alone. Probably alittle of both.
I also think psychologically I may be rejecting the rest of the world as a coping mechanism because the fact is my life is never going to be the same or even close to my old friends with typical kids.
So rather than be sad about that I have absorbed myself in helping other moms deal by sharing my experiences on this roller coaster ride of good weeks and bad as well as good days and not.
Keep you chin up and try to ignore the comments of the people who don't walk in your shoes. We on this board understand and are here for you when you have the urge to smack someone. I've been there !!!
I feel for you. I don't have any children, but I have had to deal with people like that all my life who told me I couldn't do anything, that I was nothing. They did everything but give me a proper diagnosis to work with. It's a wonder I haven't killed one of those people. I became a person I really hated. Sometimes, when I think of what I used to be, I can't look at myself in the mirror. I know I'm not that person anymore. At least I hope not.
I hope things go better for you and everyone else on this board.
Believe me, we've all been there, or in my case, I am currently feeling a bit enraged with the treatment of my son as well. Can I ask you a couple of questions?
How did you decide that pulling him out of school was the best solution? We're having some major issues at Liam's school right now, and I'm on the verge of pulling him out. But, where are you persuing his therapy and socialization, if he is not at school? Have you been able to bring someone into the home for him?
If you get a chance maybe check out my post 'the worst day...' and let me know what you think.
Radagast, you are spot on - he is very sensitive, very bright and his coping mechanisms are incredible. I have seen dozens of people ignore him when he tries to talk to them - specialists during assessments (they ignore him for half an hour whilst they ask me questions and then expect him to interact with them), teachers who don't even hear him when he speaks, or mishear what he says and go off and do the wrong thing, and people who simply mimic what he says to them, so I think you're absolutely right. I'm sorry to hear that you've been on the receiving end of this - are you on the spectrum yourself? (Sorry I hope that's not too personal a question). Do you find it too much hassle to interact now and therefore chose not to? Jaiden will just switch off when it gets too much and retreats into his own little world, no-one can get to him when he's like that.
Jeffrey's Mom, thankyou for the positivity. You are right, I do find being with mums with similar children much easier - I spent today with a good friend whose eldest boy is autistic and it's lovely to talk without explaining myself endlessly and having people offer crap advice, so thankyou for yours, it is well received!
9CatMom, I'm sorry to hear about your own experiences as well and I hope things are better for you now? Do you think people's reactions are largely down to ignorance? Thankyou for your input.
Suzy, I did read your post and I have to say that the behaviour displayed by that man and the school is beyond disgusting. He has been verbally aggressive and very threatening and if I were you I'd contact the police and see if you can have him charged and/or threaten him with some sort of order preventing him from accessing the school grounds. Your son has a right to an education and you have a right to escort him to school without fear of molestation and intimidation. The school should have very quickly informed that man that he would be asked to leave if he continued to behave in such an agitated state and supported you. Of course there needs to be a consequence when Liam pushes someone over but it needs to be clear, calm and appropriate to the situation; it is not for grown men to deal with in such an appalling violent manner. I don't know if there's some legal support group that can advise you in a case like this - we have the National Autistic Society in the UK? I'd also look at the legalities of them physically restraining your son and smack them with that as well.
With regard to pulling Jaiden out of school, it had basically got to a situation where I was doing all the work for them and I just got too exhausted to keep doing it. I wrote reams of stuff for them about his particular difficulties, what we did at home, how we coped etc, most of which kind of went over their heads. They didn't apply for the extra funding they needed to get him full time support which actually would have made it dangerous for him to go - he will escape given half a chance and needs to be watched if doors aren't locked. They grabbed me every other day for a 'quick chat' and basically talked bollocks to me, made up his IEP's and wrote lists of things he'd achieved which he couldn't actually do. I finally realised that the effort I was putting in to him going to school would be better spent going to him directly. We'd never had any useful information from a speech therapist anyway so I'd been doing my own programme with him for the last year - it's called the Hanen approach and it breaks down into simple stages each level so you can work through it systematically - I just figured out what suited him best and we've worked through it at our own pace. My bug bear with the whole socialisation thing is that, whilst autistic kids obviously need to spend time being kids, it needs to be in an environment that they are comfortable in. My boy can't cope with more than five or six kids at a time, so a class of 26 was just too much for him. We've got friends I meet up with regularly and I take him to stuff like organised 'splashes' at the local pool so he's around other children. We're in the process of moving to a more built up area where there are more groups that he can go to. I think it depends on how much energy you're willing (or able) to invest in fighting the system and whether it's feasible that home-tutoring would be easier for both of you. I do find being with him 24-7 difficult, but I'm sorting him out a childminder so that I can get a break and he can be with other people as well.
Sorry this is so long. Thanks to everyone for replying. Suzy, I'd be glad to come and vent my anger on that hideous man - I'd really look at having something done about him, his reaction was akin to a physical assault. Liam has difficulties that affect his behaviour, what's that piece of c**p's excuse? Hope you're able to sort something out. x