baileyj

I have been giving my 4 1/2 year old son Max the Haliborange Omega3 orange liquid, he's had it for about 4 weeks, so far Ive noticed he has become more hyperactive, but that seems to calming down? Is this usual? Jo

Hi Jenny, go to your GP. I was like you before XMas, I went to my GP and she signed me off work for a month, and offered to send the surgery counsellor round. I didn't have the counsellor, but just going to the GP saved my sanity, just to be told it was OK to feel that way really helped. Please give it a try. Jo

update for you folks, lots has happened since I last wrote. Its been ages since ive been the site, new job and alot of research for Max's statement later. I got alot of info off the Afaisic web site, (thanks Nellie for that advise) and also contacted the NAS, as I wanted to find out how I stood legally. I was put in touch with one of their educational advocates, you have to wait about 2 weeks for a call back, but well worth it, what a great lady, she was local to me, it seems they put you with someone that knows your own LEA. I sent her Max's draft statement, and also told her what I'd done, (I had written a report taking quotes from all Max's reports, advise from Afasic). She sent me a list of points that I needed to get into the statement, and said it was a very loose statement, and told me to get a meeting with Max's statementing officer. She also pointed me at case-law and judicial rulings to use if I needed to. So, off hubby and me went to our meeting with LEA, I was armed with my report, and rulings etc. The chap was actually very nice and very open to what we were asking for, I showed him my synopsis, and said we were only asking for what the expert reports recommended and nothing more, and that we wanted things quantified, including school funded hours etc, and requested lunchtime support, we had an OT report that supported that. We also showed him the rulings, and asked for his interpretation on them, that seemed to show him we meant business. He said he would do his best. It made us laugh though, he said we were the first ever parents who had been in touch via email, can you believe that in this day and age. lol. The outcome was very good, we have just accepted a statement that gives Max 20 hours centrally funded support, 7.5 hours school funded support, 2.5 hours centrally funded lunchtime support and 2.5 hours school funded support, plus alot of amendments with specific programes for Max. So, we are well pleased so far so good. I was very scared, but its definately paid off going in well prepared, and the NAS were fab. Max's current 1:1 will go into reception with him, as the nursery he is now in is attached, and he has alredy been going in and out of his new classroom, and he's been on his first ever school trip...his 1:1 was great, can you believe it eh, things can work out. So my advise to anyone is try and perserve, show em you mean business. Its all wrong, and we shouldn't have to do it, but it seems we have little choice. Best wishes to all Jo

Max is currently scared of the bath, since some water went through the overflow and made a gurgling noise, thats it, terrified. So having to shower at the moment. He frightened of sudden high pitch noises, or noise of vacumn cleaner, blender things like that. Scared of walking anywhere (thank goodness for new McClaren Major Stroller!). Obsessed with Toy motorbikes, Simpson Hit & Run on the PC, and the fact that weve sold a car and its gone ! And as always Thomas & Co. Jo

Many thanks for you advise so far. Ive got a little further. Spoke with the headmistress yesterday, advised I'd spoken to LEA and advised them of her position, and that from now on this was between her and the LEA. She agreed, and said funding was not my issue but hers. So, so far so good on that one. I asked her if she had had any success in the past resolving these sort of issues with the LEA, she said not really, and that the school always ended up finding the extra funds themselves. So I said, what about in Max's case if the LEA say no, she said then yes, the school would fund the extra hours, and that Max would have full-time 1:1. So I think thats a victory...we'll see. Ive agreed to speak with her at the end of the week, but as far as I am concerned I don't care what her and LEA say, the statement says Max to get support, I will ask the statement officer to update it stating 20 hours centrally funded, and 7 hours school funded rather than school to provide rest without specification. The head has asked if Kev (my house-hubby) can come up to school at lunch-times initially to help Max with his lunch, this is because Max has eating difficulties and will only eat sarnies in 1" squares (he won't bite), and has never had a lunch at school before. She said it would only be initially until Max gets used to it. The school don't have a canteen as its a small village school, the children eat their sarnies in the classroom with a dinner lady present. Ive said yes initially, but now I think Ive done the wrong thing, its just her trying to penny pinch rather than pay for someone at lunchtimes. Max will need the lunchtime help, but should be able to manage play times (I think). So thats whats happened so far, what do you think folks? Jo

We have had Max's draft statement through, he is due to start Reception in September. The bottom line is they have offered 20 hours "centrally funded " support for his 1:1, and the rest to be provided out of the schools SEN budget. THis is 7 hours. Ive been to see the headmistress and she is saying its not on, and that they shouldn't have to pay it and don't have budget. Ive spoken to LEA who have made a note, and are saying for me to have further meetings with school. Is this right, should I be getting into budget arguments with the head mistress, surely not. Ive been on the net and found their funds allocated for 2002/2003 to give me an idea, and its about �60k. Also their ofsted report showing underspend of about �60K, so surely they can afford to fund 7 hours. I don't want to upset the headmistress, the school have been brilliant so far in nursery, but Kev and I fought long and hard to get Max's support funded via the pre-school panel before he actually started nursery, so they have had it quite good in that they haven't had to do it. What should I do next, how can I approach it, I'm stuck, does anyone have any advise. So far Ive used lots of advise off here including the parental report, and we got the statutory assessment through straight away, and they issued the draft without even going to a panel. So so far so good, just this last hurdle. Sorry to go on and on, but I'm really at sixes and sevens and just want to get it right and things in place for Max. Jo

We were lucky Max's panel meeting is held at our CDC, and our lovely CDC staff gave us the name of the person who chairs it and says yey or nay, cus it pigs them off how it all works and the LEA secrecy. I then got onto the LEA website and found his email address. From there I have been in the great position to bug him via email. I also phone him on the day of a panel meeting with a silly question, just to put me into his head on the day, one of Max's PLA workers advised me to do this. Don't know if its worked, but the bloke definately remembers me and has said so at the panel meeting, cus Ive had a right laugh with Max's portage worker, also on the panel about it. Jo

HIya, Perhaps the Ed Physc is playing it safe because of the experiences with your first son, in that they said he was coping and then it turned out he wasn't. Also perhaps she thinks your daughter needs to stay in pre-school for the social interaction she needs, but attend specialist nursery for more specialised help with the more complex sensory and imaginative play needs. In my area that is quite common. Hopefully you will get a clearer picture when you go back for a full assessment, will it be done by a multi-disciplinary team? Thats what happened with Max over a 3 month period. In my experience with Max, 4, and the professionals, there is alot of conflict between the health profs like paied and SALTS, and the Education people, like Ed Physc. I know our paeid and education have many battles and disagree alot, mainly to do with support levels and budgets, and our paied has to be very careful how she words her reports, she tends to tell us the 'real' situation, but then write reports to LEA with what will work to get Max his support. Its all so confusing isn't it, and does your head in, having to play all these politics. Hopefully you will be able to find out whats what and if she needs it, your little girl will get the support to help her and you. Good luck Jo

its only an idea, but what about one of those swimming jackets, the ones in places like mothercare, they have pockets in with foam blocks that can be removed, perhaps you could replace the foam block with something heavier? Jo

sorry folks, not sure if I did the link properly its: http://www.weightedvest.com Jo

This is such a coincidence, Max's OT yesterday told me about weighted vests, and gave me this website weightedvest.com. It was invented by a Mom of an ASD child, our OT swears by em. She says it satisfies the need for deep pressure and will help calm Max when anxious or stressed. Sorry noetic, its for children so won't help in your case, but may help some of those looking for childrens products. Jo

great news Annie. Can I add some husband support please...my husband is a house-husband as i work full-time, he is fantastic and my rock and holds us all together, he's fantastic with Max, and puts up with me too which is no mean feat ! Jo

When I first spoke to Max's nursery before he started to tell them he was autistic, I told them he was not toilet trained, they said that was a problem, I told them they would be discriminating against Max if they refused him, and they immediately said OK, and he now attends, in nappies. They are even now toilet training him by taking him to the loo with the other children so he can get the idea. Stand up to em, they are breaking the law! Jo

We get high rate care DLA for Max, but were refused mobility and told to re-apply when he was 5. I have a similar problem with my 4 year old Max, he will only go anywhere in his buggy. If we try and get him to walk he just screams or stands their with hands in the air to be picked up. He is getting far too heavy for picking up and far too big for his buggy. I think he feels safe in his buggy, particularly in shops. Ive even been considering buying a McClaren Major Stroller, but would this be giving in, should I try and get him to walk? Any ideas, has anyone got one or used one? They are �200 new and what if he then decides not to go in it? Any advise? Jo

Hiya, many years ago I was prescribed Amytriptiline for migraines, I took 1 tablet and it knocked me out from 11 pm till 3 pm the next day, I was then tired and lethargic for another day. When I checked with a nurse friend, she advised this drug very strong, and used for treating disturbed mentally ill patients, bed wetting infants or migraines, and was in varying strengths. When I checked with my doctor he said I could have a reduced dose, but I didn't. It may be that your daughters dose needs to be reduced, would it be worth asking the GP? Jo

My 4 year old ASD son's diet is the same 7 days a week Breakfast: corn flakes or jam on toast Lunch: jam sandwiches, or Billy Bear ham and dry bread seperate - either cut into 1" squares & petit filous yoghurt Tea: Birds Eye dippers, Tesco french fries (must be thin fries not fat) - all cut into 1" squares & petit filous yoghurt He will also have cheese on toast, yes youve guessed it 1" squares He will not touch anything else accept wotsits, quavers or crisps. Loves nuggets and chips from McDonalds, Ive becoming a deamon at cutting em up into 1" squares, now keep a pair of scissors on me at all times. He is happy and healthy accept for alot of diarreah, but if I didn't feed him this he'd eat nothing, he'd rather starve. Ive tried everything to get him to try other things, but nothing works. Ive now reached the stage as someone said earlier, if it aint broke don't fix it, I just accept this is his diet and stick to it. Jo

Hi Gita, my son (4) had the HIB DIP, TET, PERT, Polio booster recently which is in one injection, but not the 2nd MMR which is a seperate injection. Ive never believed the first MMR affected him, though I don't doubt others have been affected, but I wasn't prepared to take a chance and have the 2nd one. Jo

Hiya LKU I also live in the Midlands, but it seems different counties/cities all do diagnosis differently. We come under Worcestershire, my son Max is 4 and has a diagnosis of "treat and manage as if ASD" which we got after being referred to a Paiediatrician at our local Child Development Centre (CDC) in Redditch, and later Clinical Physchologist at the Communication and Social Behaviours Assessment Team (CASBAT), it was the paied that referred us there. Max had multi-team assessment over 3 months at CDC which involved 2 nursery sessions a week, with him being observed and written about by the nursery nurses, paeidiatrician, speach therapist, occupational therapist. Following on from that he was assessment further at playgroup by County Specialist Support, and Educational Physchologist. They won't give formal diagnosis of ASD until he is 7 or 8 as they say he too young to know what levels he's at. The diagnosis has been helpful for Max's nursery/school support, without it we would have got nothing, in that Max has been referred to the pre-school panel and provision made for 1:1 support in nursery. We are now about to embark on statementing ready for reception. Also it has helped for DLA, we get High Rate Care. Theres loads of help on this site, and everyone has help to give or a story to tell. I see you say you are in the Midlands, I live just outside Birmingham where are you? Cheers Jo

Arr I see Max-land isn't just Max-land then, His are: Thomas the Tank Engine Motor bikes (got Daddy to thank for that one) Plug and electric sockets Numbers Adverts Fixing things Birds Eye Frozen Food Boxes (i have to empty them all into plastic bags so he can have the boxes). Max is 4 Jo

what a cooincidence seeing this post, i just ordered mine yesterday off the internet. Jo

I agree with what CarolJ is saying. Over time you just get thick skinned about it. Especially with the ones that look at you as if their child might "catch" autism off yours. Or the ones that look at you and its written all over their faces "thank god its not my child". I tend to try and think as long as Max is OK, then I'm big enough and ugly enough to cope, even though it does hurt. Max doesn't have any friends, he's only 3 and a half and doesn't want any, so at least he doesn't mind. Jo

Hi Lisa, I live in Wythall, sort of North of Redditch - where are you? Jo

Hi everyone, I'm Jo. My son Max is 2 & 11 months, and we are just starting (on Monday 15th) assessments at our local Child Development Centre in Redditch for 3 months, Max has suspected High Functioning Autism/Aspergers. Max attends a local playgroup 2 mornings a week, they are great and providing loads of help and support. I work in I.T., hubby Kevin is house-husband, so he has to attend playgroup as well - not easy for a chap! I have been all over the internet trying to find out as much as possible about the condition, and find the discussion forums the best help, just to talk to people in the same boat. Got this one from one of the other forums that I have recently found. Look forward to knowing you all. Jo