nellie Report post Posted March 22, 2005 Rabbit, Well done It's been a long struggle. I think I will just give up my battle to get J into the special school before the end of the school year....he is sooooo happy at the moment and the summer is coming.....long lazy days at the beach will be fun.....in an educational way of course!!!!! I agree, enjoy your summer without all those battles. Tomorrow is another day. Take care Nellie <'> Quote Share this post Link to post Share on other sites
baddad Report post Posted March 22, 2005 Congrats rabbit and J - way to go!! Annoying as ever that your observations totally discounted in the past while their observations in the 'new' (ie home) environment carry so much weight - same as it ever was - but a lovely anecdote for you arising from it with the hoover and stuff. If J's ever bored I've a hoover here that's feeling rather neglected... L&P BD Quote Share this post Link to post Share on other sites
sylvm Report post Posted March 23, 2005 Sounds as if things might be looking up - hope so Rabbit Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 26, 2005 Things really have moved on in leaps and bounds for us over the past few days, I can hardly keep up with it myself!!! A few weeks ago I went to see our MP.....I had been told he was pretty useless so didnt really hold out much hope that he would do anything for us. WRONG!!!!!! I received a letter from the Director of Education.....all 7 pages long!!!!! Basically it goes on about how alarmed the director was to hear of the experiences J had encountered within his old mainstream school. The Head from Hell has been "missing" from school for the past few weeks....it now appears he will not be returning!!!!! The LEA have failed miserably to deal with J's home tuition, placement at special school and statementing procedure. They hold their hands up to not being reponsible in providing their duty of care....... And from after the Easter break J can go to the special school as and when he feels comfortable. I am to attend a meeting with the school head to devise a programme of dates to integrate J back in to school on a full time basis. The Director apologise for all the distress this has caused us as a family and has asked if I would be prepared to meet with him to discuss the areas where the sytem is failing children with ASD asap. Our solicitor is in a flap because the letter is going to provide us with excellent evidence against the LEA when we take them to the cleaners for disability discrimination!!!!!!! They have admitted in their own words that they have failed to provide an education for our son....how very foolish of Mr Director..... Quote Share this post Link to post Share on other sites
Helen Report post Posted March 26, 2005 (edited) Rabbit, I'm not quite sure what you say to you... I've had to read your post a few times to take it in... The words: relief, achievement, joy, frustration and anger all come to mind. Although this is a wonderful result for your family, your LEA has certainly put your family to the test I hope your LEA gets everything that it so richly deserves Well done for standing your ground! Edited March 26, 2005 by Helen Quote Share this post Link to post Share on other sites
KarenT Report post Posted March 26, 2005 I've been reading through the history of your situation over the past couple of day and I'm astonished you've had to go to such lengths to get your son educated. Just what would have happened if he hadn't had such a dedicated mum? The past few months must have been incredibly stressful for you and I can't begin to imagine how you've coped throughout, but a huge Well Done to you for getting J what he needed and deserved. You should be massively proud of yourself. Karen x Quote Share this post Link to post Share on other sites
bid Report post Posted March 26, 2005 Rabbit, what brilliant parents you are <'> But how appalling that your whole family has had to go through this I hope you throw the book at the LEA! Congratulations, and I hope J. is happy at his new school, and that the DISCO assessment answers the questions you have about his dx. This is a shining example of the power of refusing to give up no matter how impossible a situation seems...true inspiration to the rest of us Bidx Quote Share this post Link to post Share on other sites
jan Report post Posted March 27, 2005 Dear Rabbit, What an amazing lady you are. You are an inspiration to us all! Well done! I hope things improve for all of you now, you certainly deserve it. I hope the LEA and all else involved get their just desserts for putting you through this nightmare! Good luck jan Quote Share this post Link to post Share on other sites
Helen Report post Posted March 29, 2005 Rabbit, Good luck with J's assessment tomorrow, best wishes, Helen x Quote Share this post Link to post Share on other sites
Guest flutter Report post Posted March 29, 2005 i have just read through all of this thread wow u are one special mum and well done Quote Share this post Link to post Share on other sites
mossgrove Report post Posted March 29, 2005 Rabbit I am delighted for you, you have worked very hard to achieve this. Here's to a much better spring and summer than you ever expected! Simon Quote Share this post Link to post Share on other sites
Sallya Report post Posted March 30, 2005 Rabbit, how did it go today? Been thinking about you xxx Quote Share this post Link to post Share on other sites
Rabbit Report post Posted April 1, 2005 CP came, spent the day with us.....J had major meltdowns.....and to cut a very long and emotional day into a few words.....J has been dx with Autism. A bit shocked because until recently we had always thought it to be Aspergers.....but J has a SALT delay and a very low IQ....so the dx couldnt even be HFA.....CP was excellent and picked up on things hubby and I hadnt....he certainly knew his stuff, but he is reported to be highly regarded and one professional I spoke to said she thought he was quite possibly the best out there. Very emotional and if you look at the time of posting this you can see I cant sleep....head is buzzing with a thousand and one questions.....but will I ever find the answers????? I doubt it!!!!! So what next.....sort out J's schooling for once and all. CP is going to make some very strong recommendations in his report.....so will bombard the LEA with those as and when the report arrives. Funnily enough this morning we received a letter from the horrible NHS Paed.....he wants to see me on tuesday of next week.....MP has written to him....so I expect he will be seeing me out of duty.....just to tell me that J cant possibly have any form of ASD because he doesnt lick the windows!!!!ARGHHHHHHHHH the bloke is a jerk.....I'll sit and listen to his ignorrance....once the report from CP is written up then I will gain the greatest satisfaction in shoving it up his ar5e!!!!!!!!!! Quote Share this post Link to post Share on other sites
KarenT Report post Posted April 1, 2005 I'll sit and listen to his ignorrance....once the report from CP is written up then I will gain the greatest satisfaction in shoving it up his ar5e!!!!!!!!!! Can I watch? You could sell tickets! Glad to see you're keeping your sense of humour, girl. Life's a lot harder without one. Karen x Quote Share this post Link to post Share on other sites
bid Report post Posted April 1, 2005 A very poignant time, I know, but at last you have a proper diagnosis. Hang in there, and you will get the right support for your son. You sound like great parents <'> Bidx Quote Share this post Link to post Share on other sites
mossgrove Report post Posted April 1, 2005 Rabbit My thought are with you at this difficult time. Ironically enough, this latest asessment means that the Special school is probably the right place for your son. It's an emotional time getting a diagnosis (our 5 yo was diagnosed with ASD last month). Relief that someone has understood and you have confirmation that your weren't imagining it all, but confirmation that it isn't just going to go away. I am lost in admiration for what you have been able to do for J though. He is very lucky to have you. Simon Quote Share this post Link to post Share on other sites
nellie Report post Posted April 1, 2005 Rabbit, <'> <'> The CP sounds excellent, sorry it has come as such a shock, it's a tough time. We are all thinking of you. Nellie <'> <'> Quote Share this post Link to post Share on other sites
sylvm Report post Posted April 1, 2005 Pleased to hear you got the dx and have also now managed to catch up on your victory re schooling - had a problem getting on this thread for a few days due to over zealous computer protection systems! Now you seem to have the opportunity to decide what is best for J at last. Quote Share this post Link to post Share on other sites
Helen Report post Posted April 1, 2005 Rabbit, You now have an official diagnosis for J - well done. You've fought for so long, you must be exhausted <'> Quote Share this post Link to post Share on other sites
Yorkie Report post Posted April 1, 2005 To the best mum a kid could have (except me of course!!!!!) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx Quote Share this post Link to post Share on other sites
Rabbit Report post Posted April 3, 2005 Thanks everyone. Just wish it didnt hurt so ###### much and the thousand "what if's" that are flying around my head would disappear!!!!!! The dx of Autism has really hit my hubby hard. Silly old me suspected that J would not get a dx of HFA or Aspergers because he has such a low IQ and language delay......how I wished I had sat and talked about my thoughts with my dear old man before the CP came......then I could have prepared him for the dx a little better. There is just one sentence that the CP said that is really getting to my hubby....." Prepare yourselves for the fact that it is highly unlikely that J will go on to live an independent adult life.....he is unlikely to even want to drive a car....so driving will not be a big issue for him." Poor old J....cars are his obsession....hubby has recently bought an old car and he and J are going to rev it up together. The garage is becoming a workshop and the men in my life are slowly pulling the car to pieces....J has pictures of how he wants it to look....neon lights are a must!!!! All J talks about is when Dad and he have finished the car he will be able to drive it....because he will be bigger then. In my dreams my wee man will get married....he will have a lovely family....he will be happy.....why does it hurt so much?....I wish we hadnt had the dx now. Quote Share this post Link to post Share on other sites
KarenT Report post Posted April 3, 2005 Hi Rabbit My dh is struggling too, so I can empathise with that. He fought all the way against me when I believed J had ADHD, and it's always been me who's had to get the HV out for 'another chat', me who's been behind the referrals, me who's read all the books etc etc. This time dh had said he'd accept whatever dx came about but I have my doubts as to how far he understands what 'accept' actually means. He's Ok about having a son with AS but doesn't seem to realise how much HE has to change in order to accommodate it. He still shouts at J instead of reasoning with him or using different approaches, he resents my intervention to offer him a strategy that works, and the whole thing makes me feel as if I'm having to parent him as well as J. What I've tried to do is bear in mind that while I've been working through this for four years of knowing that J had a problem, dh has been sitting with his head firmly in the sand and refusing to acknowledge it. In this respect I'm way ahead of dh and I do need to guide him through the learning process - he has four years of catching up to do after all. You'll maybe find that you have to handle your dh in a similar way. He's bound to be upset by the prognosis for your J's future but he'll learn to accept it in time. Perhaps you can encourage him to make the most of the car-related time he and J have together now as there's no guarantee that the plans they've made will come to fruition. FWIW I don't think you could have prepared him any better for the dx - if he's anything like my dh he'd have been in denial right up till the words came out of the CP's mouth and wouldn't have listened to you anyway. The dx would still have come as a shock, most likely. Try to let go of the What Ifs,if you can. Most of us make the mistake of planning our children's lives to a certain degree but the truth is we never know what's around the corner. It saddens me to see parents of NT children in the playground, with such high hopes for junior's future, making plans for this and that, but they are treating theire children like property instead of little individuals in their own right. And that's what J is. He'll make his way but it won't necessarily be the way you would have chosen for him, in an ideal world. The main thing to consider is whether or not he's happy in 'his way', so that's what I'm striving for with mine. I'd much rather he was happy than Prime Minister any day. Karen x Quote Share this post Link to post Share on other sites
nellie Report post Posted April 3, 2005 Oh, Rabbit, <'> <'> Yes, it hurts....a lot. Like all bereavements, it takes time. Karen's wise words have said it all. This helps me, I just hope I am not upsetting you further. http://www.asd-forum.org.uk/forum/index.php?showtopic=143 Nellie <'> Quote Share this post Link to post Share on other sites
Sallya Report post Posted April 6, 2005 Rabbit, I really hope you and hubby are getting over the raw shock of last week. You have handled everything so well, and your battles make mine look piddly. lots of love Sally xxx p.s I wanted to say more, but D is hitting me with a sock of lego. Quote Share this post Link to post Share on other sites
Helen Report post Posted April 6, 2005 (edited) Rabbit, (((((massive hugs))))) to you and your family, Helenxx Edited April 6, 2005 by Helen Quote Share this post Link to post Share on other sites
helenl53 Report post Posted April 6, 2005 Hi Rabbit, There is a period of mixed emotions after any DX. I think that it is a fairly natural reaction for a dad to feel the way your hubbie feels - and I am not being disrespectful to men here, - but women seem to take in the information and start to plan accordingly. Professionals seem to have a knack of making the most crass statements when discussing the future of our kids and no one has a crystal ball - so I would say the guy was generalising and not to take his words as gospel. With good support and management and focussing on their postive strengths, our kids can lead as productive and fulfilling a life as anyone. We will have a preconceived idea of what "not being able to live independently means" and this may not match up to the reality. My husband is unable to live independently, but he has a good job, he is an excellent stepfather and father and is a very loyal companion to all of us that know him. He always gives his best - and that counts for more than being a brain surgeon in my book. Keep your chin up chook. HelenL Quote Share this post Link to post Share on other sites
nellie Report post Posted April 6, 2005 Well said Helen Quote Share this post Link to post Share on other sites
Rabbit Report post Posted August 17, 2005 Well Guys....first my apologies for being away so long You know how things go.....J's Dx really did knock us back and we took some time out as a family to come to terms with it. We have spent the last few months having a fantastic home teacher coming out to the house three mornings a week to teach J in our home. She became a good friend to us all eventually.....J took some persuading and after a few battles to retrive him from under the bed, he finally settled down to actually doing some school work. It was a sad day in this house when we said our goodbyes to the teacher, but we have seen her since as "friends"...which is so much nicer. J starts school in September....we won our battles and got him his placement at the Special School....we both had our doubts that it wasnt the right place but after some integration afternoons he soon settled and the teachers all reassured us that J needed to be in the special school and that his needs would be best met there. We've had a few ups and downs along the way but on the whole things have been generally OK....well as OK as they can be when your living your life controlled by a nine year old with ASD!!!!! Still having the big problems with my "Ray of Sunshine" not sleeping....sleep whats that????? Melatonin sends him hyper....have tried every herbal potion going....thinking we may have to resort to my hubbys ideas....either move house and not tell J or I sleep in the caravan at the bottom of the garden at the weekends so hubby can do the night patrol. So thats it basically.....Thanks to those who have mailed me direct and passed on your good wishes.....I hope to be around more than I have been. Look forward to catching up with you all. Rabbit Quote Share this post Link to post Share on other sites
mossgrove Report post Posted August 17, 2005 Wecome back, you have been missed! I hope the special school placement goes well. Our 5 year old is starting special school in September having never been at school full time and our 7 year old is also starting at the same special school after a traumatic period in mainstream school so I do do undertand the mixture of anticipation and trepidation you must be feeling. Keep us posted! Simon PS Is the forum clock playing tricks or are you even more nocturnal than me? Quote Share this post Link to post Share on other sites
nellie Report post Posted August 17, 2005 Welcome back Rabbit <'> apologies not necessary! Many thanks for the update, great to hear you won your battle for special school. The lack of sleep must be difficult, I don't have any experience of it but I know others have had to alter the dose to get it to work. Good luck for September, keep us posted Nellie xx Quote Share this post Link to post Share on other sites
phasmid Report post Posted August 17, 2005 Hi Rabbit, we haven't 'met' before. This thread popped up at the top this morning and I wondered what on earth could have happened that a thread could be 2 pages long and I hadn't read any of it. Turns out that was because this was all played out long before I arrived here. What can I say about what you have all been put through? I was gobsmacked, utterly gobsmacked as I read through the thread. How on earth could they have done that to you, how could they? You are one incredible lady, your son is a very lucky young man to have you in his corner. You have been through more than anyone should ever have had to go through in order to get what was theirs by right. I hope you have hung, or will be hanging, the LEA out to dry over this. I'm disgusted with them. Can I just wish you and your son all the very best for this coming school term. I hope that the school is everything you want for him, and more, you deserve it, he deserves it. Quote Share this post Link to post Share on other sites
helenl53 Report post Posted August 17, 2005 Hello Rabbit Welcome back. It is lovely to hear good and positive news. I hope it works. Love HelenL Quote Share this post Link to post Share on other sites
Rabbit Report post Posted August 17, 2005 Mossgrove....the clocks sadly were correct....full moon on friday and my little man isnt sleeping well I finally settled him at 4.39am and crawled into my bed, only to be woken at 6.30am by the little tike who was full of energy and raring to go!!!! Quote Share this post Link to post Share on other sites
oracle Report post Posted August 17, 2005 Rabbit come and stay with us we can share the night together We have similar problems here. Great to see you back Carole Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted August 18, 2005 I am so glad that you finally got a resolution to your son's plight.You had a real battle and I'm so glad that you proved a lot of professionals wrong along the way. I hope that your son will thrive in his new placement.I'm pretty sure that I might have met you elsewhere on the web;I'm thrilled that things are now going so much better.xx Quote Share this post Link to post Share on other sites
mossgrove Report post Posted August 18, 2005 (edited) Mossgrove....the clocks sadly were correct....full moon on friday and my little man isnt sleeping well I finally settled him at 4.39am and crawled into my bed, only to be woken at 6.30am by the little tike who was full of energy and raring to go!!!! That is the bit that so many professionals/LEA's will never understand. Faced witth this kind of adversity it is hugely impressive that many parents function at all, let alone find the energy to fill in forms, rebut dodgy opinions, appeal to tribunals and all the rest. The lack of sleeping at night should definitely be mentioned on the DLA form if you haven't done so already as it can make a big difference to the amount you get. Simon Edited August 18, 2005 by mossgrove Quote Share this post Link to post Share on other sites
Sallya Report post Posted August 18, 2005 Glad to see you back, xxx Quote Share this post Link to post Share on other sites
Rabbit Report post Posted August 18, 2005 carerquie....yep we have met before in the good old days! I still pop in to have a peep at everyones news....miss some of the old guys lots but am in contact with quite a few via email, msn etc. Mossgrove....we get higher rate for personal care due to J's nightime antics.....I would rather have sleep instead of a few extra pennies! Quote Share this post Link to post Share on other sites
