bluefish
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Posts posted by bluefish
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Hi, Ds starts in reception in september and has 15hrs statement for 1-1 ls. I do not know who this will be but am almost certain they will not know ds
I was thinking of writting about ds what he likes,what he is good at, things he does not enjoy etc and including some photos.(home based stuff) so who ever works with him will be able to have some insight into what makes him tick and see things we do at home etc. BUT don't want to tread on any toes. I know his home/school diaries will have much of this stuff in as I write a weekly update about home,but thought it would save them having to trawl through all of them.
Just wondered If any of you have done anything simular or feel I should let ls find out about ds in own way and own time?
I was not thinking along the lines of "educating" some one so they get a pre conceived idea ie He wont do that or this but more like ds loves to swim, at moment finds the idea of birthday parties a bit difficult but we live in hope,loves Thomas the tank,favorate story is... just nice general stuff?
Any thoughts?
Thanks in advance
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brought a tear to my eye.
Wel done.You must be so proud
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Hi I have not replied before now as you probably know more than I do about the lea.
But here are some thoughts I had. who are you speaking to that is not doing their job and returning calls and working within the guidlines?They need to be reported. It is simply not good enough that they are not doing what they say they will. Have you spoken to the senior eduation officer? What about your MP or someone in health that could back you up?I can not understand how they can get away with doing whatever they want and no sticking to the rules! There must have someone that they are accountable to? no idea who that is, but a formal complaint has to be made! Maybe the Mp will know who you can contact to bring the lea to task.
Sorry probably been of little help. Good luck
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Whish I had some answers but sadly dont. hang in there and good luck.
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Im surprised you've been discharged. My son was dianosed 2yrs ago and i still regularly speak to his pead - if there is a problem and to order his melatonin. We also speak to salt and have regular meetings at school. i would have thought your ds should have a pead but then maybe im just one of the lucky ones
Id be interested to know how many other children have a pead.Thanks brooke for your reply, It feels a bit stange that thats it! I am pleased in a way that we dont have to see anyone but feel very confused. I gained nothing from appointment and It was sort of mentioned that it was just to make sure I understood situation? I know that ds will not be suddenly "cured" but thought they might monitor him for a few years just to see how he develops?I kind of felt It was "your son is autistic, thats not going to change, goodbye" And if we are now under education I am not happy as have no convidence in ep nor the senco who have very limited experience in asd and in senco case has no interest. any suggestions?
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Saw paediatrician who said he no longer needs to see ds. It was the third time we had seen him. First was initial referal second was dx after assesment at cdc and then today for a review. We just chatted a bit about asd I asked a few questions and updated him on statement and progress and that was that. My question is ..is that it then. ds is on the autistic spectrum and we no longer have to see anyone? or will we have to see people through school? I know at his statement reviews we will have meetings but other than that are we to be left alone to resume normallity?
just wondered
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Hi, I feel a bit lost now I have setteled for final statement of 15 hrs and it says everthing I asked. I have been so busy fighting I suddenly feel at a bit of a loose end now I am not spending my evenings researching early intervention.
So I think I have just realised (or started to accept) that my son is different and it's for life! It is stange when I am fighting it kind of takes my mind off the fact that ds's problems are real.... does that make any sence???? I know there will be many a battle yet to come in order to get him the help he needs for the future but think everything has all been such a fight so far I have not really had time to reflect on the fact my sons life is not going to be what I expected. Does it sound weird that over a year since all this began that I think it is only just sinking in?
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Thanks for all the advice.
At moment he still has them...and chemist said not to give medicine again for two weeks. I have done all of recomended ie clean ironed sheets,hoovering everywhere,hand washing etc. ds is a boy that gets naked the second he gets in the house and have been trying with little sucsess to get him to wear pants!! Hope they go soon!
thanks for replies
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Hi I noticed ds had thread worms on tuesday and bought the recomended medicine. I gave him the stated dose 5ml but he gagged like mad even though I gave it by squit type suringe dose thing as he struggles with taste and it was banana!
all ok yesterday but tonight he has tread worms? been on nhs direct web site and it mentions do not let child suck thumb.. No idea how I can stop that as it is his main comfort. Not sure if he didnt get enough of the medicine down and thats why its not gone or his thumb sucking? He does not seem to be bothered and only reason I noticed is he still uses a potty rather than toilet. Anyone had this problem? I have read and re read the info on medicine and it states nowhere if you can re-take if problem not gone,just good idea to re-dose in two weeks.I am aware that you can not give me medical advise but wondered if anyone has had this problem?
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Hi, I managed to get them to agree 15hrs. The statement now says everything it should. The support that school has to provide from it's resorses is clearly laid out.
I have very mixed feelings. I am delighted with what I have acheived as this will mean 3hrs a day 1-1
But am sad I setteled for less than I wanted.
I think I could have got more but It would have gone on and on and I felt I wanted to make sure his help was in place by september.
Not sure what I will do with my evenings now I am not studying the code of practice
THAKYOU for all help advice and support
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Hello and welcome to the forum.
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My little man has an obsession with supermarkets! can you imagine! So I have had every comment known to man kind. The staff are all great at his favorate one, and know us well. We first eat in the cafe,same thing everytime..then he likes to shop. It has to be a trolly and he likes to see it full! Unfortunatley he gets very over excited and over stimulated so his behavior can be rather loud and unpredictable to say the least! But to see his face is the best feeling ever I guess a bit like a trip to Disney for another child.
People are cruel, "Give him a dam good slap,that will sort him out"
"I blame the parents"(said in very loud voice next to me)
"If he was mine I wouldn't put up with that disgusting behavior"
"If you can't control your child don't bring him to a public place"
" for god's sake I wish she would take that little brat out"
To name but a few! As he is still quite young (4 1/2) It is assumed he is a brat and I am a bad mother.
I have got a thick skin now and have said in response" I am so sorry is my autistic child ruining your shopping experience today?"
My mum find's it much harder and I have actually got ds a i'm not naughty I'm autistic t-shirt that she puts him in as she gets very upset by comments and it gives her confidence.
I have met a couple of understanding people........... One woman approached me when ds was having the mother of all meltdowns in a shopping centre,he was screaming, kicking ,biting and I couldn't get him off the floor(without risk of injury to either of us) i thought she was going to say something horrible( as crowd had started to gather to watch our distress)
She simply said you will need a hand with your bags they look really heavy which way is your car! she was lovelly to the screaming ds and between us we got to the car and I was able to calm him down! So I guess there are some people who understand but then she probably had a child/relative/friend on the spectrum!
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Hi, met with senco breifly yesterday to talk about ammended statement.He seemed totally disinteresred! I expexted him to not only be pleased with what I had acheived but have some sort of opinion and knowledge of what school will be able to provide in terms of support.
I offered him a copy of the statement and his response was "I am sure one will find it's way to me" He made me feel stupid. Surley the Senco is supposed to be interested?????????
I have left a message for the HT to call this morning so I can disscuss it with her, I need to meet with the lea and was hoping school might have some imput......
So far I have done everything myself. I think I am going to complain about Senco to HT as he seems to have very little knowledge of statement prosses and seems to see me as an irritation
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Just tell me when and where!
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Hi caroline
Made me laugh about the hair!
No the fight never seems to end.
Our children seem to be about budgets and our children's needs don't seem to count. I do not understand how people that no nothing about asd think they can tell us parents what is best for our children. I told school my ds would not cope with theatre company coming in , they told me he would be fine.. Total meltdown and was carried from the hall as he was head banging the floor with his hands over his ears! a good example of mum knows best.
Good luck with everything.
As for letting your son down? your hair may not have been at it's best but you are out there and fighting for his needs!Well done and keep going.
Lin
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Hi well it has just arrived and is indeed VERY different than the first one.
Part two now has EVERYTHING I asked for that thay had missed out. It is clear and specified.
They have now offered 12 1/2 per week. Which I am very dissapointed with BUT its double what they first offered.
I am going to ask school for a meeting to see what they think they can offer before I go back to the LEA.
anyway thought I wouuld update you all
x
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Your post hit home to me . I hate the fight. and have considered chaining myself outside the education dept just to get their attention! Why oh Why do we have to fight so dam hard to get our children the help and support they need.
I am at the "locked horns " stage with the LEA over statement hours and it's money! My child is dependent on their budget!
It is at best DISGUSTING not only do I have to bring up my child I have to fight tooth and nail to try to get him the help he NEEDS and DESERVES!
I have been told his dx is "meerly a pointer" in the help he needs? I am sick of people who do not know my son being able to make desisions that could impact on his life.
Please feel free to pm me if you want to vent. I think I know how you feel.
lin
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The info was in a disability magazine. I did like the fact they can be used as a safe haven in terms of low sensory enviroment for chilling out.. but many many valid points made regarding not being able to get out,fire, taking something in that could harm ect. Also wonderful comment (fran I think?)"I would hate to be put in one" actually I agree ME TOO.
My house has every lock and safety gadget known to man kind! I would never shut his door at night and would never dream of locking him in anywhere. For exactly the same reason as the concerns raised! BUT that is exactly what this safespace tent WOULD be doing!!!!! Somehow it looked different?
Good to have your eyes opened by the views of others! I saw this in the magazine and it at first sight I must admit I thought they looked bright and cozy and a solution to my fears of him getting out of the house at night.
However having been given some food for thought realize this is not a solution to having a safe happy child at bed time.. Not to mention how would he get into my bed for a hug in the middle of the night!
But still think it was an interesting concept,and can understand why I read it with interest.
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Hi, autism support worker has given me info on "Safespaces" they look like tents but are built to fit in your childs room and can only be opened from outside, so you can be sure that there are no escape attempts during the night!
Anyone got one of these?
They do look really good.and can be built with window ect
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Hello Steve
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Thankyou for all your replies.
I think I felt as if it was being insinuated that I NEED to talk to someone,but having thought about it I guess I am a little paronoid as I feel our life has been under a microscope for the last year with all the people that have been and are still involved with me and ds.I am a very private person normally and have found all the attension very intrusive(but necessary)Still can't believe I was videoed for Early bird an had to watch it back in a room full of people!
I think I am scared of opening the flood gates if you know what I mean, as I have allowed myself very little time to be sad. And as you all know there just seems to one fight after another that has kept me busy. But I was thinking today, after first paediatrician appointment ds's dad dropped off the planet and has not seen his son in a year..so I do feel sad, angry, guilty and maybe telling a stanger that's paid to listen will help? but there is a part of me that feels? I don't know? selfish? Ha Ha I have just read this back and thought.. there's agirl who could do with off loading! And I guess if I don't find it helps I don't have to go! so maybe have nothing to lose!thanks again.
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Hi, not sure how I feel It has been sugessted I have some counselling....Not something I would have ever considered as I cope well and although deep down feel very sad that things are the way they are don't see the point in doing the "what if's "in life. Must admit the fight to get statement has really upset me,being delighted when a really negative report drops on the mat thinking "that will really help" then of course realise those things are about by beautiful ds and it is all true.. Anyone been down the counselling road to off load? Would feel a bit guilty talking about my emotions about ds being autistic.. as he is only who he is due to being autistic. but being a single parent of an autistic child wasn't what I thought my future would hold. Although I think in many ways I could not be happier as he is amazing.
But is it healthy to talk about things? I mean I tend to just put best foot forward, smile outwardly (and sob at night lol)ummmm any advice welcome
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Hi Jake Welcome to the forum
DLA (again!)
in Help and Advice
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Hi, I received decision from review of dla for oct when ds is five.
Care rate has remained at middle and have now been awarded lower mobility.
I feel a bit between a rock and a hard place as I am releived he still gets dla and pleased mobility problems have been recognised but now he is older he is far more hard work and cant ever be left unsupervised(I am sure I dont need to tell anyone here that!) we drive everywhere due to problems getting around and I have a blue badge that I got without mobility alowence as when I phoned dla to apply thay told me they would have to look at whole claim again and I had to be aware not only might I not get it but they could lower or remove care!so I applied direct to ss.I did not appeal first application of middle care as I was still in shock and wanted it all to go away
I really hoped he would get high care and mobility and would like to appeal but I am scared it could go down.
I do not think there was anything I could have added to the claim form. It was all true and he has a dx. I did not mention random things like smearing as (thankfully)they have been very few and far between and are not in the every day battle.
I also found the form heartbreaking and chucked in a few positives.
Also it says on the letter we will be in touch when it is time for next review. No time was given to this? How often do I have to fill out those horrible forms? I thought that the review was just because he will be five and that would highlight how much more work he will be than a nt 5 year old?