baileyj

Right now, everything seems to be awful. Our neighbours (we live in a semi) are building an extension, they call it a conservatory, but its going to have a brick wall 3 meters long, blocking the light to our lounge. Weve objected, but planners are basically saying tough. Neighbour gonna do the extension himself, so it will be evenings and weekends all through the spring/summer. The noise and distruption is going to freak Max (5) out. Had a letter today from school, starting in a weeks time they are refurbing nursery and 2 reception classrooms, which means they are all moving into the school hall for 5 weeks, even having to go in through a different door. So Max's nice safe familiar school environment is going to totally change. While its going on they are going to combine the 2 reception classes, so Max is going to be in a school hall in a class of 50+ children...omg. Then when he returns to his class its going to be totally different. Work is massive pressure right now, I am working flat out and very stressed anyway. Do you ever feel like it all comes at once? And soon it will be statement review time, so will have to go through all that again, and I bet they will try and reduce Max's 20 hours 1:1, so more fighting. I feel absolutely worn out and fed up and just wish it would all stop. Max himself doing ok at the moment, accept for he's learnt to kick push and hit lately which is challenging to say the least. Sometime I feel like life is just one great big battle, its never easy and never straight forward. Someone up their must really hate me. Sorry for moaning on, but I really needed to tell someone. Jo

Oh it must hurt your feelings so much. We also live in a close, with several children all ranging from 5 to 8, in the Summer they all play out together. Its different for us, in tha Max (5) isn't interested. I'm always saying, do you want to go and play with the other children, he always says NO. He is the opposite, he has absolutely no interest in making or having friends. I put this down to his ASD, and tell myself as long as he's happy, then I am, and if he's happy alone, then fine. But....inside I do wish he wanted to make friends. Maybe being a loner will save him the pain of their rejection? I guess were never satisified are we? I hope things get OK. Jo

Max was first thought ASD at 2.5 in playgroup, we got DX when he was 3. This opened doors to us for alot of help and interventions, the Preschool-learning Alliance helped us get a playgroup, then when he started Nursery at 4, he went in with 1:1 immediately through the Early Years panel, and started mainstream reception last September statemented with 27 hours of 1:1. If it hadn't happened I know Max would not have made the progress he has, and be the little boy he is today, so I say definately yes early DX is good. I know its a postcode lottery though, we are Worcestershire and they are very good, neighbouring counties I have heard some horror stories. Jo

My son is now 5, but I have used this forum since he was 3, so I guess I'm an ex-preschooler. We went through Statementing when Max was 4 and in Nursery and this forum was a god-send. Also when in playgroup at 3. Jo

SLT101, Thank you for you reply it is very interesting and helpful. I hope I haven't made it look like I am criticising our SALT because I am not, and I tried to say that to her yesterday, I said it was nothing personal and that we know her time and resource are limited, I just wanted to say how curriculum based Max's speech therapy is. I hope I didn't upset her. Regarding the tests, I had suspected it was the case, that they are not necessarily ASD based. As Ive said Max can name pictures for England, it doesn't mean his communication is appropriate. I guess its just a case of Max going at his own pace, and maybe he's never going to communicate as I'd like, maybe its just the way it is, and if someone told me that, I'd accept it. But they don't, they just say its part of the ASD and it will improve. I just want to make sure I am doing the best I can for him and getting as much help as he needs. His communication has improved massively over the last 12 months, his receptive language (is that understanding whats being said to him?) is much better, in January last year he simply didn't understand what nursery were saying to him, but with patience, support and fantastic 1:1 who has years of ideas, he understands quite alot now. Also his speech is alot better, he uses more and more words now. I suppose Maxs poor SALT felt really attacked yesterday, she rang me to say what a great morning they had had and how well Max was doing, and I just had a go about wanting more SALT. She hands over to another SALT at the end of the school year. We had been told it was a SALT from CASBAT, but Max has been signed off CASBAT so now its a SALT from Max's current SALTS team instead. Very confusing. It will be more of the same, half termly visits monitoring and guidance. No actually therapy though is it? Thanks for all your help all. Jo

Helen, who do I ask to do this? Jo

Max's SALT has just called me, having done her half termly assessment of Max. She "monitors" him and provides guidance. I raised my usual argument, in that though his speech and understanding is improving, he still talks alot of gobbledy gook. He can label anything, and now understand most instructions, he's just scored age 4 & 5 months on his SALT tests. He is 5 and 3 months in age. But....he never really iniates real conversation. He asks for things, and answers questions, but if he wants to speak to us, it will be a learnt phrase like "Donald and Douglas raced down the track". I said to the SALT, no-one gives us and Max speach therapy at home for real life. Its all based around school and the curriculum. Hes in school 6 hours a day, 5 days a week, what about real life, no-one helps with that as far as speach goes. She said "you can ring me any time", yeh right, she's never there. I feel really frustrated, there must be more they can do rather than just monitor? Any advise any one? I am even thinking about looking into private speech therapy, does anyone have any advise on that? Jo

Max's nursery put in the request for Stat Assessment, he was already at Nursery Action Plus, and had been "in the system" for a while. I then put alot of detail in the Parental Report and copies of all his DX paperwork. Jo

Max DXd 2 years ago. During DX loads of assessments off everyone. Then saw CAMHS once back then, supposed to see paeid yearly, but haven't for 18 months. Used to get weekly portage visits before Max started reception, brilliant. After DX saw SALT quite alot, but now SALT once every half term goes into school, but I can ring here whenever I want. OT cr*p, but now got new one who I can ring whenever I like, school also in contact. Best support initially was pre-school learning alliance, they helped us no end find a playgroup that could work with Max. And now his school are fantastic, his LSA is very experienced and knows how to tap into all the resources. Other than that, this forum has been my best support. Today, Ive been asked by the pre-school learning alliance if I will talk to parents of a newly DXd 3 year old, have agreed cus I want to help, hope I get it right. Jo

My son's statement is worded below: Part 3: Special educational provision Educational provision to meet needs and objectives ( staffing arrangements � A teaching assistant, centrally funded for 20 hours to enhance school provision for Max, whose functions will be: o To work to the direction of the class teacher and Special Educational Needs Co-ordinator, and through them to the direction of specialist teachers from the support services. o To work through routine elements of Max?s programme maintaining appropriate records and reporting back on progress and difficulties as directed. � Additional 7 ? hours teaching assistant time to be funded by the school. � Lunchtime support, centrally funded for 2 ? hours per week, additional 2 ? hours to be funded by the school. N.B. Any centrally funded resources are detailed in addition to the resources which the school itself has allocated or will be allocating. Any such allocation should be maintained (or started, in the case of a new admission to the school) from the funding which the school already receives (or will receive on admission) in respect of Max. also regarding SALT: © curriculum, � Access to the full range of National Curriculum subjects. � Max should have specific programmes to develop his speech, language and listening skills. These should be developed jointly on a collaborative basis by a speech and language therapist and teaching staff and delivered as an integral part of the curriculum and monitored jointly by the speech and language therapist and teaching staff. It is working very well, his TA has already been TA to another ASD child in the school and stayed with her from Reception to Year 11. She is very experienced the school, the system, and has been with Max now for 18 months, starting in nursery. Max would not cope without her, she guides him through the day, backing off when necessary, and cajoling when necessary. Most importantly, she genuinley cares for Max. Jo

Julie Walters could play me (also a Brummie Lass), and Darren Gough (strictly come dancing) my hubbie, simply cus DG gorgeous. This is a cool topic Jo

Guess what............Max is ill, burning up, 3 week cough got alot worse, in our bed, so after all that, no nativity or sheep song today, if hes OK tomorrow we may try, but probably not. Thanks for support. Merry XMas all. Jo

Hiya, I know exactly how you feel. Last year at Max's playgroup nativity, it was a nightmare, at that time he couldn't communicate or understand so it had been virtually impossible to prepare or warn him what was to come, he had been fine at rehearsals, then on the day he was horrified, his nice safe playgroup hall had transformed to rows of seats, and lots of strangers, he came on stage with the other children, having refused to wear his costume, sat on his 1:1s lap, and just rocked and barked like a dog. I got into such a state, the tension I felt in me was awful, all those proud parents sitting their, and me just dieing inside seeing my little boy so scared and confused. I jumped up, walked quietly to the stage, plucked him from his 1:1s, lap and sat him down with me, craddling him in my arms, and telling him what a good brave boy he was. I then felt so guilt wracked that I had put him through that, I was quite ill with it all and ended up having a month off work. From then on I said I'd never do it again, I didn't make him attend any XMas parties or anything. His safe world around him had transformed, with strange lights appearing everywhere on the roads, strange parcels, with surprises inside (to Max this was very scarey), and this big bloke in a red suit shouting ho-ho-ho. Yet, here we are, 1 year on, and yes, its his nativity on Thursday afternoon, he's been fine in rehearsals, and happily singing his sheep song all week, one of his classmates is going to take his hand when they all sing the song, he is seated by the computer room door in the big hall, so if its too much, his 1:1, can just take him quietly out..........am I doing the right thing, I don't know, he can now communicate well, he understands whats going to happen, and is prepared, and so am I............at least thats what I'm hoping/ I am very nervous as I swore I'd not let him do this again, I still don't know if its the right thing to do, I'll let you all know on Friday. Please try not to be too upset by this, this I think is the hardest time of year for us. Max got over it quickly last year, as soon as we were home with his videos he was fine, it was just me that wasn't. Keep your chin up. Jo

Max (5) is gorgeous, dark brown eyes, and thick dark hair. He's often commented on. As to whether its linked to his autism, dunno, don't care, just great to sing his praises really. Oh yeh, his Dads gorgeous too (well to me anyway). Cheers and aint it nice to say good things Jo

With Max (5) I don't try and put him to bed until 9pm, which is too late, but if I try any earlier he just won't go and just leads to major stress for everyone. I stick to a strict routine, and he goes to bed with a torch, a book and his gameboy. I always say the exact same words, "nigh night, love you, see ya mornin", then close the door with the lights out. He then plays his gameboy till he conks out, its not ideal, but it helps him wind down, and he's generally asleep by 9:30 or 10. Probably not what I should do, but it does work, so I stick with it. Hope you manage to find a way through, it must be so very hard for you, I know I used to dread bed-times, you dread it all evening beforehand, then the rest of the evening your shattered and stressed from it. Take care Jo

Spoke to HV in June, referred to CDC immediately, started assessment in Sept, DX in Dec, so not too bad really. Jo

Folks, got this in the NAS letter today: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=253&a=7806 Its a program on BBC2 next week based on Jacqui Jackson and her family. Cheers Jo

We to just tell people straight out, Max is autistic. In school all the parents are nice, some ask how he is, some treat him normally and don't turn a hair when he completely ignores them, and then theres some who don't really speak to us cus they don't know what to say. It used to bother me, but ive got used to it now, and I am very open about Max's difficulties I find it the best way. When with strangers and he's having one, and they stare, i just concentrate on calming Max down and making him happy, I take no notice of staring people. Jo

Hiya, I would say buy what you think she'll enjoy. My son Max (5) ASD has obsessions, but where we can weve tried to use them to reduce his anxiety levels, and to teach him things too, so for XMas this years its DVDs, PS/2 Games, Gameboy Games & PC Games, because that is what he gets pleasure from. "Normal" toys just don't interest him. Some one would perhaps say its not the right thing to do, but it works for us and Max is a happy chappie. Cheers Jo

Max (5) does it too, with him its advert speak, especially if I am asking him to do something like get off the computer, he launches into "your not making any sense", something he's got off somewhere. Ive learnt to cope, and answer back in the same way. Often its Thomas the Tank langugage, if he wants to express he is angry, he shouts out some angry Thomas txt. Iknow its just his way of communicating his feelings, and the only way he knows how. People do stare, but Ive become hardened to it now and take no notice of em. It does get easier I promise. Jo

Brilliant, bet your so proud, isn't it just great these achievements, its so much harder for our kids, so when they do achieve, its all the better. About getting bitten and things, I remember someone once said to me, though its hard, it means they trust you enough and love you enough to show you how they feel, its their method of communication. That made me feel better. Jo

Max too quite happy to go, in fact was first in class today. Jo

Hi reuby2, What everyones said so far is really really true. My son Max (5) was DXd at 3, at the time I thought it was the end of the world, I remember feeling physically kicked in the stomach, the words "autism" just kept screaming through my head. I couldn't see where the future was going, I thought it was the end. I worried about everything for Max, like you he is my world and I am very protective of him. I worried for his future and what would happen to him. It was so so hard. Like everyone on here says, give it time, read whatever you can, the National Autistic Society website is very good. Learn as much as you can about autism, some of it may frighten you, but remember not everything applies to each child, they are on a spectrum and all different. 2 years ago, I thought all our lives were over....I was wrong, its different yes, but different is OK. I love my little boy with all my heart, he is the most wonderful thing in my life, and I would die for him, thats never changed. Every achievement however small is wonderful, and when he looks at me with his beautiful brown eyes and smiles, I could reach for the stars. Would I change him...... no, he's my Max just the way he is, and your little one is and will always be the same for you. Let yourself grieve, then when its right for you, pick yourself up, dust yourself off and you'll find Holland is pretty good actually. Cheers and lots of love Jo <'> <'>

Mine was Ben, due to my then surname.

Hiya all, does anyone know any good websites or links or shops where I can get some ear defenders for Max (5). I here lots of peeps say how good they are, so would like to try em for Max. Cheers & hope everyone surviving Halloween & Bonfire Night/Fireworks. Jo