bluefish

Yes at times I feel sorry for myself when I am so tired and ds needs so much attention and noone(everyone here excluded) understands just how hard any one day can be! I also feel sad like mentioned in other posts for the holidays we wont have for the birthday parties we dont go to and like today the easter play that my ds did not manage to take part in.I think we would not be human if we did not feel this way at times. Yesterday I sobbed my way through town as ds was having a difficult day and people were staring at my son who was sucking his thumb and making a terrible cry(like that almost of a wounded animal) Some days I take it all in my stride and others I fall apart, be good to yourself its a hard road for you and your child. x

Hi, my son gets middle rate care and no mobility. I phoned and asked about change of circumstance in order to apply for mobility as he his now very difficult when out and about. I was told I could of course apply BUT they would look at whole application again and I ran the risk of no mobility and care going down!(worst case senario but possible) I did not apply! But I did request a blue badge from ss and got one!! At first I was turned down as GP did not support application. I was advised by ss to go and speak to GP and explain problems getting around. I did not feel comfotable doing this as my doctor has never seen my son regarding asd. So I phoned ss and explained and they agreed a health proffesional that was involved with his asd could write support letter. My hv did and we got our badge. I know this does not answer your question but the badge has helped SO much its another option for now.

Hi thanks for replies. I dont know if SALT has experience in asd? I just assumed so as she also works at cdc? But her report suggests she does not understand ds communication problems. When I read the report it was like it was describing another child! The problem is he speaks very very clearly(sounds very posh!)and uses learnt responses to questions.You really have to spend time with him to see this.He also reapeats everything and wants a certain reply to his question that he has already decided upon...In my opinion his comunication and understanding of language are probably the thing that affects him most. Do I approach the lea with a request for him to have another SALT to assess him? or is it best to contact the one that did the assesment and disscuss my concerns???? Really pleased to hear that as they are doing assessment its a good sign for statment....... I must admit I had NO idea how exhausting this all was going to be. I found writting the parent evidence very very upsetting and difficult to do. It took about a week for me to manage to get down what I wanted to say, then broke my heart when I had finished it. I actually(stupidly) thought it would all be atomatic!!!!!! child needs extra help=child gets extra help!!!! We live and learn

Hi, I requested an assessment for statement as did school.I received a letter to say they will do the assesment.I have sent in parent evidence, school have sent their evidence, HV has sent very suportive letter and ed psych has been in to do assesment. speach report was very disapointing as although did mention some problems seemed to make him sound far more able with his communication than he is and was based on a very breif one to one.he is due assesment tomorrow at school by someone?and of course I guess they get report from pead and cdc and clinical psych? Just wondered if we have got to this stage how likley is it we could get statment? I was told by ed psych that a dx is only a pointer and will not have much bearing on result? If we do not get statment or if not enough hours offered the appeal prosses sounds rather daunting... It was also pointed out to me by ed psyhc that if I disagree with amount of hours( if any given)while I appeal no help will be in place!! I feel so strongly that ds will need lots of support that if no help or not enough help offered I would want to keep him at home to educate.. so my questions are anyone got any idea how likely it is we will get statement? (or is this impossible to gauge?) If we dont, can I keep him off while I appeal? how do I find out about home education or asd units in schools He is not due to start reception till september but has made so much progress at nursery with small class,visual timetable,iep and wonderful, caring ,understanding staff that I am terrified all the hard work will be undone in a class of 30 if he does not have the support. Thanks in advance for any advice or comments

My son is autistic.... he has autism... he is hfa.. he is aspergers... he has aspergers?? Who cares! He is my son and those that understand understand. and those that never wil never will.I think that those of us as parents who have asd children will always meet people that will never get it no matter which way we explain it.. and the adutls out there who are asd will have probably found it does not matter how you word it people either understand or they dont!! I have found sadly that most people THINK they know about autism but infact have no idea. I have been congratulated by some parents when I have tried to explain he is (or has) hfa. like it is some sort of prize. I cant blame them as they have no idea or understanding of the reality of it. I have found that the wording has or is has made no difference(so far) to the way people preact.... But then when my son is older maybe he will have a stong opinion as to how he is described? lets hope so.........

Thanks for all of the comments. Since this post I have had a long, honest and open chat with my mum about her embarresment and although it was hard to hear some of her problems regarding e in public It did us the world of good.

Hi Sarah, Welcome to the forum

Hi I shall be careful in future how I phrase my posts! Please let me make it VERY clear we walked ten miles but e was only bare foot after the river NOT for ten miles. I think there have been lots of valid and interesting opinions. We all have very different ways of bringing up our kids. I dont want to start defending myself or my parenting. I did not mean this post to end up being about safety etc. I ,as we all do adore my child and do what I think is best. Origionally I was really asking "am I wrong" to be upset by my mum. It is hard to see yesterdays situation without having been here I perhaps was not as accurate as I should have been, if I had given more detail maybe it would have been eaiser to picture the scene. But as I say I dont want to start having to go into great detail to try and show you I am not totally irrisponsible. But no offence taken Its always interessting to hear what people think. thanks

Thank you for all your replies. I would like to make it clear that the river e jumped in is clean, no rusty bikes or other nasty things no currents no hidden dangers.We are lucky to live in an area where all our kids swim in the river. This is a place e plays all the time and swims in summer. I am pleased so many of you were concerned but please give me some credit as a mother I am not stupid and am with him in my wellies! Yes it is feb and yes the water was cold.And no its not ideal that he wants to play in the river, BUT this post was about his behaviour, the squeaking and the getting undressed in public.

E is four and always safe as I am with him but he does seem to feel the seasons in a different way to the norm, I have stopped fighting to make him wear a coat and the reverse when its hot and he insists on being bundled up.this was never a question of if e was safe. I have an autistc child of course I make sure he is safe, it was a question of what is acceptable in terms of behaviour? I have no problem with him jumping in the river as I think whatever makes him happy! I always carry spare clothes. It was just a question of my mum being upset by his behavour.

My mum is embaresed by e's behaviour. We had a great day out walking and all was good untill e stripped naked and jumped in the river! my mum says its not right and I should stop him. The thing is I know its feb and prob not the done thing to jump in the river but it makes him happy he does not feel the cold and it was sunny day, she was to be fair more bothered that he was squeaking like a mouse and people were staring( hee hee Its cold ,its feb and naked boy in river squeaking loudly like a mouse)but I felt hurt that grandma is embaressed! I think if he is happy and its not hurting anyone and its not in a social situation then why does he need him to conform? We walked about ten miles today(we live in the country) most of which e was bare foot and other walkers passed comment that he was bare foot.e had a great time but so sad that grandma thinks I should stop him being him. Am I wrong?

Thanks for replies! feel much better today. I have just phoned blue badge dept and told them my GP does not know my son, and asked them if form could go to HV instead as she knows us very well and sees e on a regular basis. They said just get her to write them a letter and they will look at application again. It was HV who suggested bb so am sure she will support my application

Hi, I feel really sad tonight. I think it is triggered by blue badge refusel, It is such a double edged sord as had we got it I know I would be sat here feeling sad(If that makes any sence) I just wish we did not have to fight for everything.Who in there right mind would want a badge if they didnt need it?I felt like turning up at Gp with car seat at end of surgery and saying" here you go pop to the supermarket with e and then fill in your form!" luckily had calmed down and did not do this! e had a bad day today and this made me mad that GP has no idea whatsoever what it like to walk in our shoes for a day! e is demanding response to his quetions at mo and says over and over and over say it mummy say it and I have to repeat question and answer. it sounds daft but it is SO wearing. Thanks for letting me moan. reading it back feel pathetic for feeling so tearfull

Got a letter to say e does not fit requirements for blue badge. The letter also says" You may wish to disscuss your application with your GP" Any advice on what to say to him without him thinking I am telling him his job?

Hi I applied for a blue badge nearly three weeks ago and have heard nothing. We get middle rate care and no mobility(e is not yey 5) so I wrote a letter with application stating the reasons why I thought we might be entitled. I enclosed cheque and photos.I phoned on tuesday and asked how it was going, they said they were waiting for GP letter. As we have a dx is this pretty straight forward? Gp has never seen e for asd but has had invites etc to multi agency meetings and has received copies of all reports. is it a good sign it is taking so long?

I have no words of wisdom and wish I knew what was naughty or difficult behaviour with my ds! All I know is I totally understand your frustrations! So many rules are children seem to have about so many things! I wish my ds would eat an orange hasnt had any fruit since he was 2! good luck x

hi had multi agency meeting last week and all agreed ds will need full time one to one in reception in September. I have sent my request for assesment,as has paeditrician,HV and school waiting for ed pyscologist to assess him in order to make their request. Just wondered how important ed pysc report as he has only ever seen my son once for 20 mins? Do they take into consideration views of teachers etc? Also, as everyone involved agree he will not cope without full time one to one how likley is it we will get that much help IF he gets a statment? e is hfa and I met a mum on earlybird course with a serverly autistic son who also had some physical difficulties that only got 16 hours per week! If her son was only awarded that much help then surly we have no chance of any? finding it all confussing and hard that we need to go through all of this even when we have dx and school and paediatrician and everyone agree he will need the help.. have been readindg the sen code of practice(as recomended by nas) and am just exhusted! with the meetings the letters ect Sometime feel this is all insult to injury. My son is asd but I have to keep saying and writing lots of negative things about him! moaning now sorry! just wondered how much help we can hope top receive? Thanks

little man said yesterday 50 and 50 make 100!? where do they get this from he can not count past 5 yet can read his numbers beoynd 1000 both forward and backward? and comes out with random things like 40 and 40 make 80? just wondered if any of you have had same same thing? He plays internet back gamon and wins but still can not do basic counting? would love to hear from anyone who has had any thing simular. lin

Hi I spoke to my GP about changing e's diet to gluten free and asked about the IQ fish oils. He was very nice but saw no need for either??? I know its not up to him and want to go ahead but was suprised by his response. Also as a single mum I had wondered if he could have put the IQ on prescription but didnt ask as he said there is omega three in everything these days!.... Anyway as the oils are expensive just wondered if any of you have found they help at all? I have heard they can really help with behavior. Also is it hard to maintain Gluten free diet? e is a very picky eater and it feels daunting.But if it will help then will try anything. Thanks lin

Hi thanks for replies. I posted form today! I wrote a letter and explained the problems we have getting around due to unpredictable behavior,tantrums and obbsesions. I tried to make it as personal to our situation as possible. I enclosed photos and cheque in the hope that we will get the badge! So fingers crossed

I was told that e had some autistic traits, then told by clinical psycoligist he was aspergers then got dx of hfa from paediatrician?!! I often wonder if it has to do with how much experience the proffesionals have with asd. I really understand how you feel. when I got the clinical pyscologist report it stated that he agreed with "me ?"that e was probably on the spectrum? during our appointment he clearly told me my son was aspergers? I had never even suggested my son was on the spectrum?I felt so upset and confussed. But then had appointment with paediatrician and he diagnosed my son with hfa? I was advised to contact psycologist and ask him to amend his report ,I did not have the confidence to do this and as it worked out it did not matter as e got his dx but maybe you are braver than me and could chalenge what they have said in report as it was suggested your child was aspergers? Good luck

Hope your dd had a fantastic day! E is a very striking child a really hansome little boy. He has always attracted loads of attention and has such a great qwirky personality, recently he rode his bike for the first time (he had had it a year!) past the laundrette and the women who work there came outside and clapped as he rode past! I think our children have that something that draws people to them.

Been told we will have a follow up appoinment in six months time..this will be the first since dx

Last week another child bit e (a dispute over Thomas the tank!!) no harm done. Anyway on friday night e woke in the early hours demanding an "Important chat" (where do our kids get these expressions at 4?)He said Please don't let him eat me! Bless, then went on to explain in his own way he thought his friend was trying to eat him when he bit him! just thought I would share this very cute comment. just goes to show how literaly he can take things!