Joe's gran

Thanks very much for all the good wishes. We are only just beginning to calm down!!!!

Hello everyone, Haven't been around for a while but thought you might like to know that we heard on Thursday that Joe has a place in the local language unit. We are thrilled to say the least. The unit covers an area with a population of 150,000 and there were two places!!! We did feel that Joe's diagnosis of ASD +language disorder might be held against him but his speech therapist was great and the statement came through as saying Joe needed slt at least 4 times a week. Anyway thanks for everyone's support here both with his statement and advice on language matters. Joe's gran.

Hi, We're in North East Lancashire. So far so good with LEA. Nursery have been superb!! Joe's gran.x

Hello isaacsmum, We are just going through this with Joe's proposed statement at the moment. We were advised on here to contact the NAS on 0845 0704002 to speak to an educational advocate. We did this and she was wonderful. We photocopied and mailed the proposed statement to her and by 4pm the following day she had checked the statement , phoned my daughter to discuss it and then emailed the relevant points which needed amending + most importantly in your case the legal grounds for the changes. Seems to be working in our case, Good luck. Joe's gran.x

Hi, My daughter began the statementing process for Joe as soon as he started nursery. He is 4 in May and have just got the draft statement through. Joe got a dx of ASD in Jan.All the assessments show that Joe's language is his main problem and we are hoping he will get in the local language unit. When my daughter first voiced her concerns the local SALT dimissed it all. In the end we paid for a private assessment of his language (best �80 we ever spent) and that really got the ball rolling. ......really against our socialist principles but when it comes to family who cares!!! So it is poss to get a statement started. We are so glad that we have pushed for Joe even though I think we have made ourselves unpopular with some people... well worth it to know Joe will have the best start possible! Best of luck Joe's gran.x

Thanks for all the advice. My daughter phoned the NAS legal helpline and we had to p/copy and mail all the docs to a legal representative. We did this yesterday. By the time I arrived at my daughter's with Joe at 4pm this afternoon the legal rep. had phoned my daughter and emailed her recommendations through along with the necessary legal references for back up. Now ready to begin discussions. VERY IMPRESSED!!! Thank you. Joe's gran.x

Hi, My daughter and husband are just going through all these decisions at the moment with our grandson, as Joe is due to start school in August. Although special schools/units were not suggested until my daughter asked, as soon as she asked, provision was made for her to look round them in order to make the best decision. We did feel that the professionals would get 'brownie points' if Joe ends up in mainstream but to be fair they have given my daughter every opportunity to make an informed decision. I feel it is just so difficult to make that choice and it is a huge decision for people who already have alot on their plate, all this coming only 3 months after getting Joe's diagnosis. In view of this it has even be suggested that Joe may stay at nursery until his mum and dad make their choice at least until Joe is 5 (another 3 terms away). So here in this part of Lancashire it seems people are getting choices, but maybe this is because of the severity of Joe's language problems. I sometimes wonder what would have happened if the family hadn't mentioned special education. Before my daughter looked round the special schools she had no idea that they could cater so well for children with problems like Joe's. Choices only exist if you realise there are options available. Joe's gran.

Hi, We tried Joe with a cranial therapist. Joe loves being touched, stroked, having his haircut etc. We thought he looked like a good candidate. He was really good ,bless him and the therapist was wonderful letting him have a ride up and down on the bed etc. However Joe would just not lie down which it seemed was virtually essential for one of the places on his head. So it became a bit of a 'no go' . Anyway rather than distress Joe it seemed sensible to wait a little time and try again. ( We weren't charged!) The therapist was great and was really intersted in Joe and has promised to send me the latest info he has just received on the treatment of ASD through cranial therapy. I'll pass the info on of course once it arrives. Love Joe's gran.x

Thank you so much , both of you. Where would we all be without you. Love Joe's gran.x

Hi there, Back from holiday and received Joe's draft statement today. My daughter and her husband are not happy as it is just so vague. I downloaded and printed the AFASIC doc for them to help and they are hoping to now to get some outside bodies involved (Parents in Partnership, I think it's called). Joe's needs are described very fully and accurately (severe languge disorder and ASD). Everyone involved in Joe's assessment recommends the local language centre (very few places) However the provision mentions no specific extra time at all if he goes to mainstream(at the moment he has 1-2-1 at nursery as his receptive skills are so poor). It is acknowledged in the statement that he needs SLT at least 4 times a week. In the provision part of the statement, SLT comes under non-educational provision (even though it says it should be carried out in school) and is section 6 (AFASIC make no mention of a section 6) and we sort of get the feeling that this will not be covered by the legal part of the statement as it has been placed outside education and that there will be no legal basis to fight for Joe's provision if it is not forthcoming. Has anyone any experience of this section 6 and whether it comes under the legality of the statement? It appears to be the sort of medical implications and mentions his asthma, sleeping problems etc then they slip in SLT... are we just becoming cynical or are we being 'fobbed off'? Would love some help before we get the 'big guns in'. Love Joe's gran.

Hello Double Trouble, When Joe was waiting for his diagnosis we were also confused with the information we were given. Again the problem was between the paed. and the ed psych. The ed psych thought ASD (well probably Asperger's with a language disorder too) the paed thought specific language impairment with quirkiness due to not understanding everything. We eventually got a dx of ASD... good ... as Joe will get loads of help. I suppose it is diifficult for the professionals to work together as they are coming from different angles. A pity we sometimes get caught in the middle . Just for info, Joe has great eye contact , always smiling and giggling and people who meet him for the first time have no idea (except for his language) that he is not NT. Hope you get the dx which will provide the most help. Love Joe's gran.x <'>

Great. The search engine is very efficient on there. Thanks!!! Joe's gran.x <'>

Hello Teresa, Nice to have another 'gran' on the forum. My grandson is Joe, 4 in May, dx ASD. He attends nursery with 1-2-1 help. We look after Joe when his mum works during the week. We too feel very lucky to be so much a part of his life. I am sure you will get lots of help and support for you, your daughter and all the family. Look forward to future contacts with you Love Joe's gran <'>

Thanks Valiant Skylark, That's gone straight into my favourites. Joe's gran.x

So sorry Sallya to hear your bad news. We are just waiting for Joe's statement news. We had heard that they are getting increasingly difficult but it seems that you have just the right attitude and a fighting spirit is essential. Good luck Joe's gran <'>

Ok by us ! Great work!!

Just the reverse here. Joe adores the hairdresser's. It really relaxes him and when he is having it combed and cut you can see him getting sleepy even. We are just in the process of contacting a cranio-sacrial therapist that we have read so much about on this forum. I think Joe may be a good candidate for success. Your posting on haircuts helped us to see how he may benefit from this kind of therapy. Thanks very much Koala and of course this wonderful forum. Love Joe's gran. <'>

Hello Dylanspace, Just to let you know how disgusted we are to hear of your daughter's treatment in the archaic system which you have all been exposed to. You mustn't blame yourself. Everything we do for our children is for their good ; you can't blame yourself when systems or organisations fail to do their job properly. I am really sorry I can't offer any practical help except to say we are thinking of you and your daughter. Much love Joe's gran.

Really difficult one this....causes. My daughter is firmly convinced that Joe's ASD has not been caused by anything and is just...'Joe'. He did have very difficult birth which could have been one of the triggers I suppose. He has always been a little bit different although we didn't suspect ASD until he went to preschool playgroup and found it difficult to mix with the others (althoguh plays well now 8 months on). We do have one or two slightly quirky family members, myself included I suppose too. So he fits in well with his computer obsessed grandma! Joe's gran.

The problem with the policy of inclusion is that it is cutting people's options down as, certainly in our area, parents of newly diagnosed children are not sufficiently informed of their choices. We were not even told about the existance of the local language unit/special schools until we read on here how some children had benefited and we began to look into the position locally. Since my daughter really pushed the idea of special ed more options have been given and time is being spent now looking round various schoools ..but it was difficult to find out what the options were. Joe has really benefited from going to the local mainstream nursery and it has encouraged us that he may 'do ok' in mainstream school. However in nursery his 1-2-1 support assistant has had children with ASD / AS before and the staff generally have been wonderful. It seems though the support may only be as good as the support person. I am sure that the greater majority are dedicated people but we worry that Joe may get one in mainstream who is off sick every other week ...what do we do then? It seems to us that inclusion should be just one of many options but in this area the options are being reduced because of inclusion, with local special schools merging and even closing in some cases. Joe's gran

Hello Lisa, They were selling personal laminators in Sainsbury's (here in Northern England) last week. (Yep we were surprised too) Only about �20. Worth giving them a ring perhaps. Love Joe's gran.

Good news certainly. We have had the same response from Joe's nursery where they have just been wonderful and nothing is too much trouble. Hope all continues to go well for you all. Love Joe's gran.

Hello loulou, Wonderful news. Love Joe's gran

Hello Loulou, That sounds really interesting. Our grandson (now dx ASD) has had iron deficiency and had to go on medicine for a while. The specialist told our daughter this was not uncommon in children with Joe's problems. The iron medicine didn't seem to do much except make him constipated but the deficiency was not that serious (he took it for3 months). I wonder how many other children like ours suffer from iron deficiency and whether ASD is actually linked to it. Love Joe's gran.

Hello there Viper So sorry to hear of all the problems you have been having with your little one's school. It is so unfair that if your boy was unable to use to toilet because of anything else but a phobia I am sure the authorities would be bending over backwards to accommodate him. I do hope things get sorted out very soon for you all. Just for the record my oldest son (now 34 and a manager of a huge hotel ) would not use the toilet only his big yellow potty (he is NT!!). We spent the first 4 years of his life with this big yellow potty in a carrier bag where ever we went. Luckily he managed the toilet just before starting school. Obviously your son's problem is more serious and although we are very new to this and can not offer any real practical help be assured that we are thinking of you Love Joe's gran <'>