isaacsmum

You could try sandbox-learning.com this has a free full colour story on waiting. You just enter all your childs details and they personalise it for you. They have loads of other printable stories but you have to pay around ?4 or ?5 pounds for them. lucy sorry I cant work the hyperlink thingy

I dont know if you have considered going down the gluten/casein free diet route but I have heard that some children chew clothes because there is gluten in either the fabric or the washing powder and they are trying to get a gluten "fix". You could simply try changing your washing powder as an unfamiliar taste might not be so appealing. But I agree with the other suggestions that you try to find an alternative item for him to chew.

Great news Sallya I cant think of enough superlatives to praise IPSEA they are a godsend to all us parents in dispute with LEAs ( which seems to be just about everybody with a schoolage child with SEN) Ill raise a glass to you tonight lucyx

Ive not been onsite for a while as Ive been bogged down a bit trying to sort out isaacs statement but I just wanted to let you know that we had a meeting at school last night with the LEA and the senco and following advice from IPSEA we held our ground and they have agreed to everything we asked for They did try to fob us off at first with the old SALT is a health issue and not education but the lovely lady from IPSEA told me exactly what to say eg. "if you can prove to me that isaacs communication problems will not affect his ability to access the curriculum then i will accept that this is not an education issue" The other bit that had me gobsmacked was when i asked why all the needs in part 2 were not addressed in part 3 of the statement he tried to say that the needs were just a general comment on isaacs abilities and should i wish to have each need addressed in what he called a very "inflexible" manner then those needs would have to be "investigated further to make sure that they were real needs!!!!!!" I couldnt believe the cheek of the man and told him to go ahead and investigate but as isaac was dx autistic and had been seen by innumerable professionals confirming this it would be highly unlikely that they would say anything different partic as all isaacs "needs" are just those intrinsic to autism. Anyway after 2hrs of "heated debate" everything we asked for (and some extra bits) was agreed. Thanks to everyone who gave me advice on my earlier posting about contacting ipsea and the nas educ advocacy service. They gave me fantastic advice. lucy

Thanks everyone for your replies. I have spoken to a very helpful lady from the N.A.S. educ. advocacy service and have got some useful quotes from the IPSEA website (couldnt get through on the helpline,theyre obviously swamped due to seeming complete inability of LEAs to write statement clearly meeting kids needs) I have completed my letter of concern and feel a lot less stressed than yesterday altho still a long way to go. I think what fills me with despair more than anything is this long term never ending battle just to get a reasonable level of support. I work with kids with SEN myself and I know that schools and LEAs have limited budgets but if I hear one more "professional" argue that they "have to prioritise" and x wont get any help because there are x number of children who have much greater difficulties I will personally wring their condescending necks Its like going to the doctors with a fractured toe only be told to go away and live with it because mr x is much worse off he only has one leg! Sorry to rant so much but ive had the week from hell 1) The school I teach in was OFSTEDed last week and I was told that the special need kids i work with were being "denied access to the curriculum" due to the fact that i was withdrawing small groups to work on social skills, communication skills and fine motor skills using carefully worked out small steps to meet their indiv needs but thats not good enough because theyd missed the vital text on plant growth that they couldnt have followed nor cared less about. 2) My sons beloved SSA who has been with him full time for the last 2 yrs came round to say she was finishing at the end of term because she only wanted to work with foundation stage children. 3)The dreaded document referred to above 4) Last but definitely not least, my 40 th birthday ( i dont know how that happened im sure im only 19) So I apologise for my incoherent ramblings but thats my excuse and im sticking to it OH BOTHER ITS TEN PAST 3 IM LATE FOR THE KIDS LUCYX

Have just recieved Isaacs proposed amended statement and its slit my wrists time again They are once again being deliberately vague and not specifying hours etc. Im in the process of putting together a letter stating my concerns and wonder if anyone could advise. In part 2 of the statement it states that isaac has Special educational needs in terms of expressive and receptive language (which is good) BUT it does not state specifically that he needs speech therapy. Should I ask them to put this or will the above be enough? In part 3 the only ref to speech therapy is that there should be "a structured language development programme, in conjunction with the speech and language therapist ( as directed by the relevent NHS trust)." To me this is a get out because it could simply mean advice being given to school and no speech therapy at all. I want them to be more specific but have been told that due to the shortage of speech therapists available they will not specify amount of speech therapy to be given. Should i request that they specify eg 1 hour a week (which he has at the moment despite nothing quantifiable in statement) and risk having to fight it out at tribunal or do I accept that if there are no speech therapists available theres nothing they can do? There are other issues in the statement including that it does not quantify funding but this is the one that is bothering me the most. The thought of having to go through all this AGAIN fills me with despair. lucy

Me too. I know how stressful it all is but stand firm and you will do it. GOOD LUCK!!!!!! By the way your husband sounds just like mine! lucy

Like Zemanski says keep copies of EVERYTHING and note of when was sent. Dont worry if what you have isnt in depth, send it anyway. On the form asking for parents views paint the worst case scenario as if applying for DLA (I know this is hard to do but they need to be persuaded to make a statutary assessment) If they do decide to assess, they will contact everybody themselves (social services, paed, gp, pre-school etc) and will send an EP to do an assessment either at home or in pre-school or poss both. If you need some support try contacting parent partnership (or local equivalent) they are really helpful. good luck, lucy

one other thought pim, it is much easier to withdraw a statement than to get one in the 1st place so even if it later does not prove necc. at least youre in a better position to get his needs met. lucy

Helen, in answer to your query, it varies year to year, and our ed psych is slightly more flexible than yours in that she will try to see any child we consider an "emergency", but there are a very limited no of ed psychs to cover an enormous no of schools and so time is limited. On average we get around 5 visits of approx 2-3 hours a year. ( we are a small primary school with around 260 pupils). Hope this helps. lucy

Steve, If youve not already managed to get sample you can get special bag thingy that fits inside nappies. We used this on Isaac when we did the sunderland test. We got them from health visitor and it did take a couple of goes but managed to get sample during night. Hope this helps. lucy

I would advise you to start the ball rolling as soon as possible. In my experience it is much easier to get a statement BEFORE starting school than afterwards. The problem is that once a child has started school they are then competing with all the other children with S.E.N in that school for the allocated time of the ed psych assigned to that school. As well as being the parent of a child on the spectrum I am also a teacher responsible for SEN in the foundation stage and in that respect I am constantly battling to get children assessed but have to prioritise due to limited ed psych time available (it breaks my heart). Also as you are then dealing with "professionals" who work for LEA rather than health authority it is in their interests to err on side of saying a statement is uneccessary as money for ASDs and complex learning difficulties is centrally (ie. LEA) funded whereas other SENs are funded from schools own budget. ( I hate to be so cynical but I know it to be true) In the case of my son, his paediatrician asked for a statutary assesment at the time of dx. (he was 2yrs 3 mths). This took 6 months (and a lot of phone calls and faffing about and arguing) to complete. But he started nursery with a full statement and full time support from an SSA with experience and training in working with ASD kids. I believe that all children with ASD dx or even suspected ASD should have a statutary assessment. It is likely that health service will support you in this if you ask but even if they dont you can request one yourself. They dont have to assess but they have to give you a good reason why not. Please dont give up it is def worth getting it sorted now. It will only get harder later. GOOD LUCK!!!!! lucy

Whoops! Its GLUTANO bread he gets. It does say on the packaging "may contain traces of nuts,eggs soy and milk products. It also says this on the packets of glutano shortbread ring biscuits which he also gets on precription. Isaac has been eating these products for over 18 months now and it is only in the past few months that these warnings on the packaging have appeared. When I checked with the manufacturor they insist that it is "highly unlikely that these products are in anyway contaminated with dairy products" but they are including the warnings just in case of the remote possibilty of cross contamination. Isaac does not appear to have any adverse reaction so as you say baddad- if it aint broke dont fix it! ( I have to say though, the ENER-G is better. Glutano is like plastic bread we got from early learning centre) lucy

Thanks Lucy and Nellie Have had a look at above mentioned sites - interesting stuff. I wait with bated breath to hear how James progresses. Well spooky about the moose thing ! love Lucy

Hi Lucy This sounds really interesting. I must confess Ive always been wary of using drugs on Isaac but this sounds quite positive. I did try Isaac on DMG which is supposed to be entirely natural but it didnt seem to do much so I gave up after 4 mths ( and �88) Do you know of any sites where Id be able to read up on it? Another Lucy ps My husband calls me moose