farfalla

Hi guys long time since i was here, so much has happened and that would take me a year to type ........ so im just gonna tell you about niams sleeping! after 14 years and 9 months he is sleeping at night after being given metolin last thursday! He still cant face swallowing one, he has tried bless him, but he chews them and within 2 hours he is asleep. i have been up at night with him since he was so small and now he is sleeping, it is so weird yet soooo fantastic. i wouldnt have niam on medication for all these years, and then did so much research on this drug and after a lot of thinking abd worrying it was the best thing ive done. # i know its early days but the first night sleeping is amazing. now to sort out the rest of his life

Hi all thanks for the replies - to answer some questions........ (i will try and remember them ha) Niam went into a mainstream school when he advanced to senior 2 septembers ago, and didnt fair well, we carried on and on with them but it made him so depressed and withdrawn - which in a way was a good thing we moved away......... i looked at mainstream when we moved here, but after a lot o thought, did i want my child to go through all that trauma again of starting a new school, trying (with great difficulty) to make friends.... trying to answer his questions of why i put him there, and his pleas of help - every night he came home from school........... my answer was NO! It killed me watching him before i wasnt putting my child through that again ! so its been a long process! I have rang and rang.......... every week................. being told they are waiting for reports from this body and that one! what can i do or say......... except quoting the timescales! i have everything written down........ every call, person and outcome! Here are my timescales........... Jan 22nd - assessment being considered (6 week deadline) 5th March Feb 20th - letter to comfirm proposed assessment to go ahead (on track -very good) 14th May - assessment to be completed (Not yet) 28th May - proposed draft of statement or letter in leui........ (Nothing Nadda) 23rd July - 26 weeks up over and out! i rang again today - and the information is all collected and ready for a draft statement to be proposed and sent out to me, it in in the tray of his officer........ and i should get the draft this weekend or early next week!!!! Unfortunately there isnt one person to shout and rant at, due to the factor about 5 or 6 people have to compile the information that goes towards the final statement................ So i sit and wait. we have put forward a school for Niam(well the Ed PHY told us it was the one he thought would benefir niam best, but we arent 100% sure of this, so i have more research to do!!), which is a hospital school, dealing with children who find it difficult to cope with mainstream and assist them and anaylise them before placing them in a school!!!!!!!!!! Niam wants to goto school, no he doesnt like the hussle and bussle of mainstream but he wants to see people other then me and my hubby! So maybe next week i will have some answers, and prob more questions if i dont understand the draft statemtent! thanks for reading andlistening guys xx

Well not much has happened really....... As some know we moved to Devon in December, and we couldn't get Ds into school due to his level of LD and reports that were sent back from his mainstream school in Guildford. So i thought i would give HomeEd a try- that lasted about a month, i had a visit from the inclusions officer who advised me that schooling would be better for Ds - due to his lack of social skills! That was in Feb! My DS is NOT in School!!!! He will NOT be going school until at least Sept!! 9 Months of nothing! I saw the inclusions officer two weeks ago and she was so shocked that Ds was not receiving any education! Ds has been seen by educational phy! A Ped consultant! and thats about it. they are sorting out his assessment for statement! what happens when the 26 week deadline is up? im sure its 24 weeks this week.... who do i kick off too? how much impact will it have - its not as though he can goto school as they are all shut now! and half the people dealing with Ds' case are on holidays............. and hey i know i worked for adults in social services, and saw how and when the childrens school department took time off (a lot)!!!! Well not much o an update really, but the fact my son has lost a lot of his education is so disapointing! rant over thank you and good day

Wel thought i would vent my frustration on here, i always found it helps I wrote on 6th Jan we were home educating DS.............. I have heard NOTHING! So i rang the Lea today, and she told me about his statementing process, even though surrey had got the green light to go ahead with the stat assessment, we now have to re apply!! This is going to panel on 12th FEB! |They werent sure how up to date the paperwork from Surrey was, and needed to look into this..... at which point i told them we were told around the begining of december that green for go on assessment, so thats how up to date it is!! My officer (who i dont care for much, already!!), said we dont know your son here, so we would have to start again, i raised my voice then, and said this has been going on for 18months! so does he have to suffer another 18 months before he gets from education what he should of had in the beginging!!!!!!!! (and by then he would be nearly leaving school) Then she told me that it was LAW that DS had to be school educated, at which i replied............. ITS LAW HE HAS EDUCATION EVEN IF ITS SCHOOL OR HOME BASED!! After a few mumbles and oh er ermmm...... she said i will get in contact with the home schooling officer to come and visit, and dicuss what he will need to be doing..... (i dont know what things he is on...... i am no teacher). after her apologising for DS not having education now for 9 weeks! he may get some soon....... not that he is moaning!! i then rang surrey to see that my case officer had sent all the paperwork to plymouth, which they said they had, and i should ask plymouth for paper copies of ALL of it for me to keep! this is due to plymouth also saying that they didnt know if they had all the information they needed!!!!!! tomorrow i start my new job, tonight i will be mainly drinking WINE!!

Thanks hun, hope you and yours are well, is connor back at school now? i will send you my home number so we can have a chat............ i am still waiting for LEA to ring me concerning the home ed......... ha at them being so good..... gulp! xx

Well we have now moved and nearly settled in.. still boxes to unpack! We talked to Niam over the xmas about school, and showed him the websites of the nearest ones to us- basically he has flipped and has school fear now! His last school in Guildford we great- they tried all they could with him, and got the assessment process going, but his experience there wasn't ever good............... So now we are going to Home ed him, i am a bit scared and wondering if i am doing the right thing, but i know a friend (hey clare), who managed it, so i am going to give it a go................. We have transferred all the info here, and lea are being good about things (so far), we just have to wait for a phone call to talk things over........... as at the mo i dont know what the heck i need to do, i have tried to look at things online but they are a big mess in my head................ So thats about it from me so far. OOOOO apart from its his birthday today,.............. 13!!!! He hates parties, but is letting his cousins come down for a little buffet later.............. How will i get on - god knows - i havent got a clue ha ha Happy new year to all........ lets hope this one is good for my little baby

i am so annoyed got a letter from lea today, refused us on the grounds, the school had failed to send in info from the E.P and others involved in his care at school. rang the school and the senco was very apologetic, but its like i said to her, it took her 3 months to send the silly thing off, and they did it incomplete. now we are moving at the end of the month, so the school are sending all the information back to lea this week, so at least if we get an appeal to a yes, DS' statement process will continue, and not have to be restarted! i am drained and for what................. those idiots!

OOOOOOOO and schools in plymouth or the surrounding area please elp!

Today we have decided (all in a day) that we are moving to Plymouth. We are all set, but worry about all the tings we are sorting out up here, Niam is setting out to be statemented............ will this be affected?????? Niam is being seen by chams (i think thats how it selt) at the end of december, by which time we wil have moved!!!!!! Yes 4 weeks today! we will begone, what do i do to transfer all this over? i have an appointment with my gp tomorrow for other things, can i ask her to transfer it al over? do i need to ring SS about the statemnt............ God no wonder my brain is mush, and now this to add to it all any help with be gratefully recieved

Hi just wanted to say my son chews things. when he was young it was his tops..... corners of t shirt, parts of his coat, they would get so wet i use to take 2 or 3 with us in case we went out to change him. I can say he has grown out of the sucking thing, but that was the start he likes to chew things.............. he chews everything..........! When I have asked him about this he tells me he likes the feeling in his mouth. so at the moment, its plastic coat hangers! i find them broken on the floor and find bits in his bed. I have spoken to him about the dangers too, MY fear of him choking more than anything........ but he looks at me all grown up and says *mum i ain't silly*! He is nearly 13 and I cannot see him losing this trait soon......... sorry i cant be more helpful

wow thank you for that rainbow, i will get the doctor to look at this. he is overweight due to noise levels within PE,so he stopped doing activitiy sports in year 7! we try and keep him active but it is becoming harder too when he is constantly moaning about his legs and feet, i will ask bout this though. today he is having a good day - but then we are at home!!

thought it would be nice for us togo too london for the day, mother was up with my 7 year old nephew........... Dh had the day off..... so all ready to go. Started ok until we got on the train, very busy going to waterloo, and standing room only....... DS starting saying his legs hurt and he needed to sit down, then he got angry with me and said it was fault he was cramped and i should move back. on telling him i couldn't because people are behind me, he told me i was an IDIOT, as loud as he could........... and nearly everyone looked at me. He started huffing and moaning telling me i was stupid, and i could feel everyone looking, as if i was a bad mother and he was just a naughty child....... GOD should i get autistic tattood on his head!! I did manage to calm him down, but he was still quite angry on leaving the train, so we had to sit on the bench for 5 mins so he could rest! While walking through london the only thing he shouted about continuously were that his legs ached and they were going to snap. his Nana tried talking to him which made him worse, so i had to snap at her and tell her to leave him please! We went to china town for lunch, DS loves chinese food, so i thought this would be good. WRONG - the curry wasn't the NORMAL one from our local....... and all the other things there didn't look right or taste right, a buffet lunch for 4.99 and he ate a piece of chicken! 1 cube of it, before gagging and spitting it back on his plate! I will know better next time, if there is a next time.............. i thought i had done everything to prepare him, telling him step by step what were going to do and showing him web pages of where we would be.............. i overloooked the overcrowding on the train...... D'OH! Once on the train home he was back to lovely self and we relaxed, got in the car and drove home.................. back to normality! Just wanted to have a vent on here, things have been a bit stressed here lately, me and hubby had a blow out, but think we have things back on track, he even said for the first time, seeing son with our younger nephew he could see the difference in him straight away. rant over, god it seems worse when i see it written down......

Fantastic news hun I am sooooo happy for you catch up soon xx

Sending hugs out to you and con honey! If you want to scream gimme me a ring or pop round for coffee, and bring connor to say hi to Niam, and of course bring that crazy doggy xx

good to have you back hun, hope all is well x

sigh i am so thick,. spoke to lady dealing with case and got it all sorted brain will be back to normal soon eks

Hi All, i got my letter through today to say the SEN panel are meeting to discuss a stat assessment. of course they want information.............. is this the time i send in everything all at once? what things do i need to send in? ?letter from the school? ?emails from the school? info on how DS is at home after school? info on sleep patterns etc, it is info to support the statement....................... i can not think for the life of me what to send, i got a migraine last night and the thing wont shift! typical! any help would be thankfully recieved, and i will look at the info files on the front pages............ one more baby step forward hopefully.......... meeting on the 5th november

WELL DONE BOTH OF YOU i know i knew but want to bump up my posts lol :thumbs: :thumbs:

Hey hun hope you are well, speak soon........... as for the assessment, got an email today, to say yes Mrs B, the paperwork was sent off last week! Nice to keep me informed, but at least its off......... phew

Just an update, I was told this morning by the head of LA, that DS assessment has been sent!!!! i feel relieved, but this was not from the senco, so i might have to email her too just to make sure,.............. not from the horses mouth, so can't believe it yet a baby step forward..... update later

glad he managed to stay calmer then you(in all that traffic), bet its strange for you too not having him around....... one step forward...... will text you later this evening when you have had time to relax <'> >< <'> >< <'> xx

hi suze i am on the same, but reducing it by 10mg is a bit heavy and could well be the reason for the tearful and mood. go back to the doctor straight away and tell them how you feel,they should increase it back to20mg no problem. and as the above post said, ask the doctor if 10 then 20 every other day may work better for you, but you will need to see the doctor otherwise you will run out of tablets then be in a bigger fix. hope this helps hugs far xx

thanks for the replies people, i have looked at the link with the letter and will look into it once my frame of mind goes back to a normal thing! thanks for pm clare, put you into my phone and will text you over the weekend so you have my number too! god i am just drained, its like the begining all over again!

Just thought i would have a winge here, not been around for ages, as i have had a meltdown as well as DS. saw the child protection officer today, due to some issues he had been told about DS, why had he been off sick from school on many occassions - they have been told when he was off the reasons why, a lot of the times were due to him having a bad day with other children at school the previous day, and caused him anxiety and the refusal to go to school the day after! he told one of the teachers he has crisps for tea sometimes! - after i laughed i told him yes he may have crisps while his tea is cooking but if you knew DS you would know that he wouldn't even let me get away with JUST giving him crisps!! what does DS do at the weekends, does he goes out and play with other children - basically NO, he won't entertain the idea of playing with others, he has a close circle of 3 friends but only likes them coming here or going to their house. he knows his road sense if non exsistant and won't go over to the shop alone, due to a busy road crossing! then he asked me what support i had - NONE! i did of course refer to this website, and say it was a life saver on many occassions. but other than this i have no network of help. he mentioned that i was married, and that i had someone to talk too................ again HA - as much as i love hubby he does not grasp the AS with DS, nor does he attend meetings at school, get involved with calls to and from school, or deal with any issues that arise. i prob could ask him for help, but when i get lost with it all myself! why should i confuse someone else then the tears came again, you would think after all this time that they would stop and i would harden up to the world........ but no, the littlest thing sets me off, when i am on the phone to family and they ask how i am i quickly tell them i am fine and everyone else is fine, just to get over the risk of the wet face! all my family live in devon and i am here in surrey, the in laws are nearby but not that i could go over and sob to them, i know they would be great but it aint my thing! i did ring social services the other day asking to speak to someone....... (i work for them- with eldery peeps), and i got fobbed off! passed from one person to another, and in the end put the phone down in a worse frame of mind then when i started! i am still waiting for the assessment from the school to go off for his statement............ this is another bug bear! the senco told me in july she was sending it.... so all summer i waited for my letter to arrive to add my bit! nothing- on returning in sept i was told the LEA dont meet during the summer so she was sending it by the end of sept! now i dont know if this is true and puttin LEA into google didnt give me much info! then 2 wednesdays ago i asked if it had been sent, she said her line manager was looking at it be end of the day, to check all the info was ok, and she would then send it............ when i got a call from her monday evening i asked was everything ok with assessment...... on which i got a reply, oh my line manager has been away for a few days and he has to check it over for me, which he will do this evening! what is going on........ can i complain to someone about being told yes it will be gone soon, and still hasnt. we would of heard by now if it had gone by july, if DS was being put forward for a statement, but no we are still at the starting gate! son does get a lot of assistance at school with LA's but im not stupid as i know this cant continue forever, and soon the funding will dry up. he will be in year 9 next before we hear anything............... sorry to rant on, i have nearly had it with everthing, signed off work at the moment for being mental myself, (ok for crying, same thing though) and don;t see any light at the end of a long wet tunnel! i will keep breathing, and as far as my son goes, he will always see me smile, but where do i go from here any replies will be thankfully read, and any info will be sucked up like a mighty hoover

thank you for all the replies, its only been the last 6 months that he has shown anger at home, usually its in school bless him! He was angry with his girlfriend too last week, but we put that down to being tired after getting little sleep! I say girlfriend, but losely. They have know each other for 5 years at primary school, and she asked him out last year, he won't cuddle her or even contemplate kissing her, as for the sexual side of things he doesnt seem to want to know about the birds and bees, even when i have tried to talk to him about changes that are going to happen as he gets older, and with his bits and bobs ha! He has talked about being dead too, amd i have told his doctor about this, just so she has it on record, but that happened a couple of times after school with the continuing bullying, which after the first year of senior school has not stopped! but that again is another tale............ it is surprising we all don't end up in mental homes, it is just as hard being a parent of a challenging child as it is a (should i say) normal child...... here ends this rant for now. off to see how i can please him this afternoon