baileyj

Done, and I had a letter back from my MP yesterday saying she would definately be attending.

Max, now 8, came out of day nappies when he was 5 and night nappies when he was 7. We waited until we thought he might be aware, which is difficult as they don't always know, or know how to tell you. We were advised to start all nappie changing in the bathroom, so it could be associated with going to the toilet (no mean feat in our tiny loo!), then when it got to Summer let him run round the garden with no bottoms on, so he got used to tinkling, seeing it happen and get used to the feelings, next we moved onto the potty, initially had potties in every room, so he could go easily, then moved on to just 1 potty bringing it to him, next taking him and the potty to the bathroom, again to start associating going to the loo with the bathroom, and finally moving on to using the loo. We found there were 2 very different issues, firstly the fact that he knew he needed to go to the loo, but secondly and the bigger problem, not letting him wear nappies. It was the one most constant thing in his life, something he'd always had, and in the end we felt it was more a case of him not wanting to let go of the nappies rather than not knowing he needed the loo or had control. Eventually it was cold turkey on the nappies, and he realised we weren't going to give in. We had to be tough, but it was worth it, you do need to be sure they are ready for that though. That then led to cold turkey with the potty, again he started to want that rather than the loo. The whole process for day nappies took about a year, so it does need patience. At the end of the day we felt it didn't matter how long it took as long as Max was OK. Night nappies different ball game really, a quicker process, as Max much older and understanding, it was more of a reassurance thing. We planned when we would start, did a picture story, kept a mini potty/toilet in his bedroom for re-assurance, put a rubber backed sheet on the bed, and gave it a try expecting nightmares, but it sent very straightforward and he was dry within days. There are no hard and fast rules for this, no exact age, just when your all ready, and keep gently trying, if at first it doesnt happen, just stop, leave it for a few months and try again later. Good luck Jo

Weve learnt over the years that you don't need to conform. As someone said, traditions are important to us, but that doesn't mean they are right for our little ones. Max now 8, now enjoys Christmas, but that only started last year. Now, from about October I start writing a list of what he wants, with Max's help, and he sees the list. I have become an expert on Adverts and honeing in to what Max wants. Then I give everyone in the family an item to buy, so that Max knows what he's getting. Now we can wrap pressies, but when he was younger he hated surprises. It took me a few years to get over that and learn that it didn't matter if we were abit different. Result, no shocks or suprises, happy Max, so happy family. And, on Christmas Day when were all sitting down eating the Turkey at the table, Max will be in the playroom (his choice) with his nuggets and chips and a happy boy because he's not stressed. Hope everyone has a good one, or at the very least survives it. Jo x

Mines the same, he's 7, its guns, war, soilders, shooting over and over again, models of guns, names of soilders. At 7.30 in the morning i wake up to him standing by my head saying "morning Mom, I'm corporal blahdeblah, and this gun is an AK47 with a magazine", and it goes on and on until bedtime. Doesn't matter what you say. I just answer, with "oh yes", or the required thing. Its exhausting. Now yr telling me its going to carry on into teens, omg!

It has really helped me reading this thread also. My Max, 7, has been moving into his own world more and more, particularly over the last 6 months, and more so lately. With Max its all soldiers and guns, he calls us Seargent Smith, or tells us he is Corporal so-and-so, and if we don't play along he gets so angry. Its getting worse as he is getting older. I had wondered if it was because he is becoming more aware of the world and didn't want to be in it, but in his. He calls it "his world". I had wondered if this was something that 7 to 8 ASD children do? Reading this, others are very similar. Also he's not liking the end of term, as activities are different, today its a beach party at school which thinks is terrible. Don't feel so alone now. Sorry have no answers, but just the reassurance that its similar. Jo

Started wondering when Max was 20 months old, felt sure at 2 and a half when he started playgroup, he was DX at 3. Now he's 7! Jo

Can I ask, what is the 5 point scale and sensory profiling? Thanks Jo

What county are you in the Midlands? I am Worcestershire, and our assessment was done quite quickly, NHS. Jo

Hi, I agree with all the others, wait until ready. What we did was in the Summer holidays before Max (now 7) started school, just before he was 5, was let him run round the garden with nothing on the bottom half, so he could have accidents to his hearts content, from that he learned to know when he needed a wee, because he could see it. Then we had a potty and moved it to every room he was in, and kept saying "do you need wee?", and when he said yes, sat him on the potty, with big but quiet (so not too noisy) cheers and rewards when he did good, and also the same if he didn't go, so he felt sitting on potty was a good thing. Also while he was still in nappies, made sure all the changing was done in the bathroom, so he learnt to associate the bathroom with wees and poos. Honestly we must have looked barmy singing all the happy songs in the loo, but hey. The second half of the problem was not just learning when he needed to go, but to get him away from nappies, he loved his nappies it had been a constant all his life. Once we knew he had some control, we just had to go cold turkey with the nappies. He begged us for them, but after an afternoon of us saying "no your a big boy now", he gave up. It then took a long time to move away from the potty, we were forever emptying it. But over time, we moved it to the bathroom, so he got used to going to the bathroom for it. When he was about 6, we went on holiday and didn't take the potty. When we got home he asked for it, and we said it was gone. He again, kept asking but after an afternoon of it, stopped and has used the toilet ever since. Night nappies, different thing. We got Max out of them just last December when he was 7. We waited until we felt he was ready, then got a special bed sheet for accidents. We made him a story about going to bed in pants, and put that on his bedroom wall and read it every night, and stuck ridgedly to it. Cut down drinks before bed, going for a wee, then sleep. We did put a potty in his room for the first few weeks, more for reassurance for him to be honest. He was more than happy to let it go last month. So apart from a few accidents, he's been dry at night for 3 months now. Hope some of this may help you. its not set in stone, its just what we did. Most important thing is, take you time, and don't stress if it doesn't happen. It takes as long as it takes. Jo p.s. Max's nursery tried to do the no nappy thing, when he was 3, I told them it was disability discrimination, and they soon backed off, He wore pull-ups all the way through nursery.

When Max was diagnosed with ASD, we were also told he had hypercausis, which is sensitivity in hearing. He has problems in the classroom with all the noises being loud, and seem to crash into each other. We got him some great ear defenders, which filter out the noises, but he can still hear the teacher. Got em from here http://www.peltorkid.co.uk/ He has had them since he was 5, he is now 7, and they have helped so much. Jo

My son Max is 7, in year 2 and due to take SATs this year. He has a statement and 27 hours TA time. School are brilliant, have said he can have longer to do his tests, over several days in short bursts, in a seperate room (which he will prefer) with his TA to write for him. If at any time we feel its pressurising for him, then he won't take them. Max too has much difficulty writing, he hates it, so TA writes for him, or for things like spelling, he uses pictures of letters. Good luck, hope you can get the help thats needed. Jo

I just wanted to post what I think is great. Tonight I am going to a talk in Worcester given by an OT on sensory stuff, I found out about it from Max's LSA at school, she is fantastic. She rang the place in Worcester, got all the details and booked our places. Even the people at the centre said they'd never had school people before and how good it was. So tonight, Max's LSA Julie, the school SENCO Pat, and me are all going to this talk together, to find out more and see if there stuff that can help Max at home and at school. Its all in there own time, and a good 20 mile drive to get there. Can I just say, I know lots of people have awful times with there school and support systems, but I wanted to shout a big THANK YOU to Max's school, and particularly his LSA and SENCO and for all they do for him and me. <'>

Hi, its been a long time since Ive posted, hope everyone well. My question is, my Son Max, 6, always seems talk in his own world, its a happy world, but not ours. Whatever his current obsession is, he talks about it, and lives it most of the time. He was a very late talker, really only started understanding and talking more in the last year. Right now he is into a playstation game called Medal of Honour which is a shooting game, so from the minute he wakes, he will ask us what guns we have, ask us to choose what guns we like, calls us "marines", and lives his life through the game. He will answer questions like "do you want a bag of crisps", but apart from that its like pulling teeth. His whole conversation is in that world. It makes me so sad, will it always be this way or will he grow more into our world as he grows older? We don't try and change it because he gets so upset, and can't understand. Also as he's getting older his temper is vicious. We realise that he needs to be able to retreat to his world for comfort and security, so we wouldn't dream of tryin to change that. Will it ever change? Will we ever get to have a conversation about real things? Should we continue to live in his world? He is a bright happy loving little boy, very brave. He is in mainstream school with fulltime 1:1, his LSA is fantastic and works wonders with him, so in lots of ways he is doing brilliantly. Sometimes its so isolating and lonely for us. He doesn't play with other children and doesn't want to, if he talks to other children, it will be an off the wall statement about his current obsession, and they look at him like he's got 2 heads. We love him so much, and accept him as he is, but occassionally we wonder what the future holds. For all you parents of older children with ASD, or older ASD peeps, does it change? Jo

my son is 6 nearly 7, he too has changed alot this year, more agressive, more obsessive, shouting, if he doesn't want to do something getting very angry with us. i was going to put a post up similar to this asking the same question. i don't have any answers, just keep persevering. its hard though. Jo

My 6 year old is sensitive to noise, one of the boys in the year above, realised this got a rise out of my son, so kept going up to him in the playground and screaming down my sons ear, causing him to burst into tears. He got so anxious and didn't want to go to school. Fortunately, my son told his TA, who kept close to him, made the boys in question apologise, told their teacher in front of my son that they were in trouble, so my son could see them be in trouble. But... it carried on, I then threatened to go to the parents house, but the school didn't want me to and so the boys parents were bought into school. It has stopped now, but my son is still frightened to go out into the playground. We have made an elaborate reward system to combat this, and the situation is monitored. It was horrible though, I was so upset at the thought of my son standing by the classroom door scared. We are lucky, its a small village school with zero tollerance on bullying. Jo

Maxs' OT recommended some excercises, not sure if they are physio as such. Its to do with the fact that he struggles so much with writing. Max is 6, and OT said it was to do with the messages from his brain going to his hand holding the pen. Would that be motor coordination, not sure. Anyway, he does simple exercises with his TA at school each morning, baby pressups x 10, and then he leans on the wall with his hands, and pushes up and down x 10. Also, he has a bandage strip, his TA has drawn spiders on it, and he has to scrunch it up with his hands. It does seem to have helped, and his TA has made it into a fun game too. Jo

Max has similar, its called his Safe Box, and contains favourite toy cars, bricks etc. Its kept in his classroom. Jo

Weve ordered ours, and school have also ordered one. Jo

Hi, Max (6) seems to be changing, and I could really do with some advise, or to know if its common? For years everything was concentrated on speech and understanding, now he can speak and understand us (this has come on in the last 12 months), we have a changing little boy. Great of course, but it does have its draw backs. The worst thing is, if we tell him No don't do that, he just flips. Its as if he searches his memory for a response, picks one from a cartoon, currently Bugs Bunny, and comes at you saying "shut up, shut-it up" trying to put his hand over your mouth. So, he can be trying to do something that may hurt him, like stand on the saddle of his bike, so I say "Max, don't do that, you may fall and hurt yourself", and flip, off he goes. It doesn't matter what tone of voice I use, either normal, quiet, or shouting (Ive tried them all), he just can't stand to be told not to do something he wants to do. I try to calmly explain hes being told not to do it because we love him and don't' want him to hurt himself, but still no good. He gets so angry, and it always ends up in him storming off and in tears. That breaks my heart as he looks so sad. Is he playing us? I think maybe weve spoilt him, and he's always got away with too much because of his autism. I suppose I make excuses for him thinking, he's autistic he doesn't know its wrong. Does this happen to other people? How do you handle it? Do you have any suggestions for ideas on ways round it? Is there a better way to say No? Help please, its getting so difficult. Jo

Sounds like you are making good headway, slowly but surely. Keep it up, if you do, you will hopefully get the right result. You have all the right people helping you, and NAS or IPSEA are so helpful. I know its very stressful, and tiring, but if you do get a good result, you will hopefully feel, like I did, how worth it was in the end. Jo

I know what you mean, my 6 year old said to me "on Christmas Eve on 24 December, Father Christmas comes and brings me birthday presents, and on Christmas Day on 25 December, I go downstairs and find my birthday presents under the Christmas Tree". It did make me smile. 12 months ago, he wouldn't string 2 words together, now he is obsessed with dates etc. I didn't have the heart to correct him, as I was just so proud he said it all! Jo

That sounds great, I bet your so proud and pleased. Jo

Same from me, without this site, Max wouldn't have got his statement with excellent provision. I used lots of examples and info off this site. Hooray to everyone! Jo

This all sounds like typical LEA avoidance. They always send out the first statement with very loose wording, lots of things like "when needed" and "upto". I had all this reworded in Max's statement, with the help of the NAS Advocate. I think they do it to see what your made of and what they can get away with. You have to be really firm with them, and show them you mean business. If you follow the rules, as long as you write back within dates, to say you are going to respond when you have reviewed xxxx, you don't have to stick to the 23rd December date (I think). LEA will always try and save money and cop out. Don't accept this statement if you are not happy with it. We had about 4 before we accepted one. If you want I can email Max's final statement to you, he started Reception with it, and its been maintained. Let me know if you want a copy, pm me yr email address and I can send it. Please treat with confidence. Hope it helps Jo

Hi, I used this service when Max (6) was being statemented in nursery ready for starting Reception. It was brilliant! I had to wait 2 weeks to be allocated a person, she was local to our LEA, and knew exactly how they worked and had been through it herself with her son. I emailed her a copy of Maxs' proposed statement, (which was very loose) she went through suggesting amendments, and making it more specific, she also guided me through the process. She got me to setup a meeting with the LEA, and again gave me suggestions for the meeting. This included writing my own report using quotes from all Maxs' assessment reports, as to what he needed. Each time I got a proposed statement I emailed it to her, and she went through it. The end result was Max got 27 hours 1:1 with very specific tailored programs to meet his needs. She was worth her weight in gold, I would recommend it. Good luck Jo p.s. that was for Worcestershire LEA, I don't know how it is for other areas.