skye

Hi Jsmum and Kathryn, Got the proposed statement in my hand today. It sounds really good. They propose 32.5 hours one to one support for the term after XMAS and then 22.5 hours until the yearly review. Part 2 and 3 look really good. They seem to have taken everything into account. I think we have to give it one last try and I also just found out that there is an ASD independent school not extremely far away. I am going to try once more with the mainstream school and like Kathryn says if it doesn't work we will be in a very strong position to change the provision to special and possibly even the ASD school. Whew, I am worn out with all of this! I am trying to hang in there and go this last little bit of the way, but it's hard.

QUICK UPDATE: I received the statement. The SENCo asked for 17.5 hours and we were actually rewarded 32 hours. The SENCo couldn't believe it. She says the LEA never offer a full time statement like that. I have had to completely reconsider my game plan. I feel like we really are going to have to give it a try with full time support. I am afraid if I keep her off and for any reason it doesn't work we would have to start back a square one and maybe never receive a full time support offer like this. So thanks for everyones advice. We are still doing home ed at the moment and are working with the SENCo for DD to come back at about 2 half days per week until the support worker is hired. Probably won't start back full time until after XMAS holidays. Anyway, Thanks for all of the replies and help!

Well my kicking off and showing that I wasn't going to stand for anything less has finally paid off. The statement is done and suggests 32 hours full time one to one support!! I had just let the school know that I was going to be keeping DD out for home ed. I am working wiht the SENCo to send in DD on a very part-time basis until the worker is hired and starts after XMAS holidays. I finally feel like we are getting somewhere. I was happy to keep her home, but really hope that she will be alright now with full time support. I really take my hat off to the home edders as it's out 3rd day and I am already tired and worn out. I just wanted to come on and say WOOOOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO

HEYHEY! I am like a new woman. So many exciting prospects for my little girl! I have gone Ikea crazy in the house and organized everything and I do mean everything I could. After visiting the ASD unit I realize how organized everything was and how at ease the kids were with it. I have spent an entire week getting everything ready for school to not start this Monday! WOOHOO!! Off to Eureka science museum, the library, Leeds Armoury and swimming all this week. Next week is a "positive news" class set up at the local library for home edders and then home ed climbing in Rochdale and a meet up at Yorkshire Sculpture park. We are going to pack in as much as we can right now and stay busy. I can't wait to go to museums and shops while all of the other children are in school. Rock on! Skye

Thanks for all of your great advice and comments. I love it on this forum! Anyway, just to let everyone know DD is now officially home educated. I feel like a huge weight has been lifted. I am really happy and excited with the prospect of home ed. I know that it is the right decision for our family. WOOHOO! Freedom! <<<<BEEP>>>> the SYSTEM! Two fingers in the air to bad schools and no provision for high function children with ASD!!

Hi K, I just wanted to share our experience of my DH and his trying to obtain a diagnosis via the NHS in our area. I too was like you. When DD started being assessed for ASD I was reading up on all of the material thinking wait a minute here! This sounds a bit familiar!! Anyway, DH told his GP about what I was saying and at first was in a bit of denial about it and didn't really want to discuss it. I think curiosity got the better of him. He really wanted to find out if this was the reason he had such a hard time in life. He was put in a special school for being "socially disturbed" at an early age. He was severely bullied etc. The GP referred him to a psychiatrist who I don;t think really saw any benefits of an adult gaining a DX., as in what he was hoping to gain by it. It really went no where. He actually told DH it can sometimes make people feel better to say that they have AS and that he was happy for husband to tell people that if he was so inclined. We were extrememly confused by everything the man said, and that's as far as it went. I know that there are a few adults on this forum that have been successful in obtaining a DX of AS, but I think the majority of them did have to go private and fund it themselves. I don't really understand the problem with DX an adult. From what I gather it can be trickier the older you get because you have gone through life being this way and have been able to possibly mask or change some behaviours to be able to function in life. Therefore something that may have been very apparent as a child may not be so easy to see. Anyway, sorry no advice here. I have to say it has actually helped our relationship. I have to make allowances for my DD because she has ASD and I have learned to do the same for DH. Little things that used to get on my nerves or hurt my feelings don't anymore. Anyway, I hope you find some answers. XO Skye

It is really great to hear a positive outcome! Long may it last!! I am sure if the school is as good as it appears to be, you could probably just mention that you would like a bit more detail in the home to school book and maybe you could set something up to go in and see them more regularly or maybe even a weekly phone conversation with someone in the classroom. Seeing the state of DD's home to school book, if she were doing really great then it would probably be empty as they really only showcase the worst bits and problems from they day! Maybe it is a good thing that they have nothing to report! Really pleased for you.

Thanks again for everyones advise. I actually printed out a deregstration letter the day before yesterday. I decided to attend DDs IEP meeting yesterday to see what was being said and think on it. They seemed very positive about DD, however I am seeing a different view of what is going on from where I am. A woman who has been allocated to DD from the ASD team attended the meeting. She of course had loads of good input. Even with all of the positives I cannot help feeling like mainstream is not the right place. The proposed statement will be here in the next week. I guess I will get it and read through. We have visited the ASD unit in a mainstream in our area. Unfortunately there are only 6 places available in all of Calderdale and only 1 open place currently. I am not hopeful about this place and the next intake meeting for the place isn't until February. I have been informed that it is merely an assessment unit and the aim is to have the children back into mainstream sometimes as quickly as one term. I am just not sure I can cope with that or DD for that matter. The only other option available in Calderdale is a special school which I would be happy with, however my friends son who has AS currently attends there and my friend is trying to get him partially into mainstream for fear he is missing out on some vital components of his education. It's just a bad situation all around. What would we all be doing if we did not have to fight every step of the way for our kids? It is just one of those things in life that is wrong and so unfair. Not everyone is so strong and unfortunately there must be tons of ASD kids falling through the cracks of the education system. I do really appreciate all of the comments and help. I don't post here as much as I should as right now I am barely hanging on. Keep up the good fight! Tomorrow is another day and unfortunately for most of us another battle. <'> FIGHT THE POWER!

Julie, You are right I have not seen the proposed statement yet. I am aware of two different possible outcomes but I have run out of steam. I can't keep fighting. I could focus all of this energy to somewhere positive, like home education and I wouldn't always feel like I am fighting a losing battle. I'll keep you posted on what happens. Thanks, Skye

Hi Everyone, I have a huge dilemma and I know you out there with all of your experience can help me once again. My DD finally got her DX last month and her Statement is due to come in any day. From things that have been said DD will receive 17.5 hours per week one to one support in mainstream. I am still having major problems with the school she is currently in and to be honest, I can't see any mainstream being the ideal situation for my child. SO now it's the IEP meeting tomorrow at school. I really just want to sign her off of the register and Home Educate her. I am really worried that if for any reason she would ever need to go back into school then what are the implications of pulling her out now? It is my understanding that her having a statement of SEN could make it harder for me to home educate her, however if we back out of the statement now then what will happen in the future? I know that so many people are fighting for a statement right now. I just don't see my DD getting the type of support that I think she needs which is in a specialist provision. I know that she will still have the issues she currently has in mainstream even with a one to one in place. Advice appreciated and considered. Thanks, Skye

Thanks everyone for the advice. I never even thought about the toy library! They have loads of good stuff. I will get in touch with them. We stopped going when DD started school. Just wanted to say that Argos has a bubble fish lamp on sale for £29.99. It is really great although alittle loud humming. I got a big fluffly rug and some pillows. A disco lamp that was also on sale and very cheap. I got a plasma lava lamp too. It is great and DD loves it. I wish I had done it sooner. I think you could easily kit out a good sensory room like I made for about £100. Feel free to PM me about where I got all of the great stuff for the room. Mookamoo, I got some dog toys too. I also got a teething ring which she popped on the second day, and a couple of rubber door mats. Thanks again to everyone for the super good suggestions. XO Skye

HAHA I stopped in Lid'l last night. They didn't have much in. Thanks for the advice. I am off to the flea market and charity shops and then going further afield. There are probably some nature type shops in Hebden Bridge I could call into to find some stuff. I am excited to see what I come back with today!!

Hi Everyone, I have not stopped by on the forum for awhile. Unfortunately school has gone from promising to start with to absolutely horrible in about 3 weeks. This is a whole other post! I am going to visit the ASD Unit on Friday for that. The reason I am on here today is for more great advice. I am going out tomorrow with one thing on my mind. I want to create a nice relaxing sensory room for DD to come home to after her nightmare day at school. I have found a fairly cheap bubble tube, wax lamp and disco light at Argos. Does anyone else have any good suggestion for what I can get and where I can buy it that isn't online? I have thought about going to The Range or possibly Ikea? It's late and I am on my way to bed. If anyone can think of anything good, it would be really appreciated. Thanks, Skye

JSMum, I haven't noticed much improvement during the day. She is starting to have a really tough time in school again, due to a lot of changes with teachers etc. It's really hard to tell right now as all of that stuff is up in the air. I am going to tour the ASD Unit of a local primary school next week. I just hope that it all works out. So far so good with the Melatonin though, no noticable sleepiness or anything in the day. I have to say she is still waking in the night though. Mandapanda, Same here with the not taking anything. My daughter had to be held down by 3 nurses to be given some paracetamol in her bum because she had a super high fever. They never did manage to get it in there and she was admitted to hospital until her temp came down. I have found some disolvable paracetmol that you put in juice and she is fine with that(unknowingly). She does not even know about the melatonin. She likes a drink of orange juice after tea, I just open the capsule and stir it in. It pretty much disappears. I give her the orange juice in the front room at 7*30 and only have the tv and a small light on so that she will not notice if there is any bits of powder there. The lengths we go through!! So far she hasn't even noticed, this from a kid that can tell the difference between Asda and Morrisons peanut butter spread thin on a sandwich. So may be worth a try?! Thanks for the well wishes and I hope everything is going great for you all too . XOXO Skye

Sorry it's taken so long to come back to this post. The whole family had a severe cold that lasted over a week. W are finally all feeling better though!! Just an update on the Melatonin or "magic orange juice" as it is called now. Libby has her melatonin at 7:30 and is asleep by 8:45!! It's amazing! It still makes me smile and giggle when she yawns and talks about being tired. It is still totally new to us that she even looks tired or much less says that she is tired. So far we have no complaints. No side effects and good nights sleep! WOOHOO <'>