bluefish
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Posts posted by bluefish
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Thank you KezT
Having felt so low and tired I called in the cavalry(my mum) who took ds at 6.am and I went to back to bed for a couple of hours and was refreshed(well a bit) and ready to carry on! she is the only person I have ever left him with and never overnight as he is very hard work and an escape artist! But I think that I need to ask for help a little more often as it really helped. I think I can be a little too proud for my own good sometimes! I just never wanted to "put" on her and have always felt that my life choices led me to be a single parent and I didnt want my mum to feel put upon, but truth be told she loved being asked to help out! and the two of them had a ball! we have agreed she will sleep over once a week and do the night with ds and let me get a full nights sleep!!!!!!!
so maybe that bad day worked out to be very positive indeed.
Lyn x
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Firstly I wouldn't worry about carrying a toy. My son is 8 and still takes something with him everywhere. His school also allow him to take something with him every day, usually two items so that he can share it and play with someone. They also use the toys/items he takes with him in the Social Skills Group, where the other children might ask him about his toy etc. He also likes to collect things. By that I mean any small piece of nothing in particular that catches his eye that is on the ground. It might be shiny, and usual shape or colour etc and it goes into his treasure box.Your son is only 5, and as part of his diagnosis he will have difficulties with speech, social interaction and communication. He may get upset at social/play times because he wants to 're-enact' something he has already seen, or he may have a precise way he wants to play to go. My son used to try to 'direct' his friends by telling them what to say and what to do. Now he is older he is more flexible. But having said that he can be very rigid in his way of thinking.
Rather than spontaneous play groups, he might do better at structured play where he goes somewhere to do something and he knows what he will be doing. Again he is a bit young for things like cubs etc. But that type of structured environment might work better.
But he will need school and a Speech Therapist (they are the professionals that work with social interaction as well as speech) to work on his skills in school, especially as he wants to play and interact, but doesnt know how to do it.
If he is getting very upset then he probably needs some time out to calm down. I used to use sunglasses and DIY ear defenders for my son and it seemed to work. He has since been screened for Irlen Syndrome (Visual perceptual problems) and wears Irlen lenses.
So it will get better. When he is really upset and having a meltdown there is nothing that you can say or do at that moment other than try to remove them to a quieter place. I too have talked to my son about going somewhere to calm down, but he is unable to predict when he needs to do that, and when it is all unravelling he is unable to do anything about it. But, TBH, if he could then he probably wouldn't have got a diagnosis, because that is part of their difficulties isn't it.
Also, afterwards when he is calm talk to him about what upset him. My son has given me some really good insights into what actually caused him to become upset and sometimes it is nothing along the lines of what we are thinking is the problem.
Regarding sounding pleasant, intelligent and much older. That is because they learn by copying things, language included. So although he is using very sophisticated words and may sound older and wiser than his years. He may not have the understanding or maturity to match his words.
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Thanks for all the replies, It really helps to know we all get these days and its not just me!
A better day today, so onwards and upwards!
If given the choice of a lottery win or 8 hrs sleep I know what I would choose
Thanks again everyone and thinking of all of you having that bad day xxxx
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Thanks Enid, feel rather silly for posting but the walls just closed in on me today! and everything felt hard!
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Put this in the wrong topic but dont know how to move it
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Hi, had one of those days where I just feel worn out and just a bit sorry for myself...ds has just pooed his pants again which has become a daily thing and I think just for tonight the smile has slipped. I am worn out through lack of sleep and the constant demands of ds and simply tired!
Feel the need to moan and feel sorry for myself just for tonight...... sorry!
Just feel so sad that this is my life... and dont see a silver lineing
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I am sure tommorow will be better, but a tough day sometimes makes you look at the whole pictue and thats when things look blesk, single parent and I worry like mad who would care for ds if something ever happened to me
moam over!
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Thank you for the advice.
and thank you kathryn for being pleased ds is doing well. I can honestly say the new school is like a drop of heavan! they love ds and he is doing so well that I had to hold myself back from hugging his teacher at parents evening!!!!!!
It just goes to show that schools differ so much where special needs are concerned and having lost all faith in the education system it was fully restored within days of ds starting his new school.
I think that the school will probably fight to keep ds hours but have decided to ask to meet with them prior to the review, so I can hear any negatives they might have to raise in advance.
It feels strange as at the last school things were so awful that I had alot to say and now I have nothing to do with school other than" Good morning" and " thankyou, see you tomorow"
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Hi, this post is a little early as the review not till December but it is already on my mind and wondered if anyone could advise....
Ds moved schools in Feb and since the move things have been perfect! He has a 15hrs statement which the new school take very seriously and I have NO cause for complaint or concern and would go as far as to say the school have given me my life back! It is wonderful not to worry and complain all the time!
I feel very confident that they understand ds and take amazing care of him.He of course has his difficulties but these are planned for and managed very very well(can you tell I love his teachers!)
This will be his second review, the first was just a couple of months after he got statement at old school and everything stayed the same.
I know ds is doing so well due to the fantastic support he recieves and due to the hours the school have in which to give him that support, however I am worried that the support will be reduced as he is doing so well.
I want to be very positive about his progress and the school at his review but will this mean his hours may reduce?
I would not be able to say he is struggling as I think "be carefull what you wish for"
The education officer is very nice, although we locked horns in the early stages of ds statement, he seems very fair.
will it have a negative affect on ds statement if I can say it seems perfect and really works?
reading this back it sounds a little crazy, but I have heard if a child does well the statement may be reduced
thanks for any replies
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Oh yes, a huge problem!
I do have several of the same thing but they are either exact copies or just slight variations in colour. I know people think I don't change my clothes but I know I do and so I don't let it get to me.Why? Well that's really difficult to put into words. I suppose it's a mixture of things:
- Not having to make a decision about what to wear and worrying about making the 'wrong' decision
- Knowing how the clothes will feel so I'm not uncomfortable
- This won't relate to your DS, but it means I don't have to make huge decisions about what to buy - I know which shops sell the items I wear that fit me
- Also, by always wearing the same, people can't make comments on my 'new' outfit, so I don't have to deal with not knowing what to say!
It sounds to me like you're doing all the right things - I'd just suggest caution over the day-named outfits in case the sock monster gets peckish and steals part of one outfit...
thankyou so much for your reply, glad you think I am doing the right thing....it is nice to hear the view of someone on the spectrum as I am working in the dark and everythining is trial and error xxxx
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Good luck
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Hi, ds always wants to wear the same clothes on non school days(he calls it his weekend suit!) at weekends this is frustrating but not the end of the world, although I am sure people think the poor lad has no ther clothes! but I choose my battles these days and this was one I decided he could win as it did no harm and caused him so much distress.
Now its the holidays and he could not possibly wear the same thing everyday, although he would love too!
I reasoned that it might be that he feels "safe" knowing what he will wear? so have made up 7 different outfits(suits), named them with the days of the week and put them on his visual planner each day and it seems to have worked, he is still a little unsure and would prefer to wear his favorite suit but is complying.
Just wondered if anyone else has this problem? and also if any adults with asd might be able to put in to words what ds is feeling regarding his need to wear the same thing....
I guessed it could be security thing as he wears his school uniform without fail, for school trips, dress-up days, plays etc as he can not understand that you could possibly wear anything else!
I often think the other mums think that I am an absent minded mother and I simply didnt bother to kit him out on non uniform days
not to mention every phot of my son he is wearing the same thing!!!!
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Hi
my son was also diagnosed at 4 and I too knew it was coming, when I met with ds consultant at the end of his time at the cdc and he actually said it out loud I felt like I had been hit by a truck! I was amazed that I felt that way as I was pretty sure he was autistic as it had been mentioned when ds was reffered.
That was two years ago now, and I sometimes have a very sad day, but it does feel easier.
Thinking of you.
I bought lots of pecs on ebay at a very reasonable price, and our visual timetable helped loads! I hardly use it now as ds is more verbal and we have a good routine.
good luck with everything
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Hi,
I try to introduce new things with little or no success, but keep trying,so he gets to see new things. Thomas the tank has been and still is one of ds obsessions and has been for 5 years,that always seems to stay where other things come and go. Ds has been obsessed with signs,the highwaycode,safety signs industrial signs....this has been going strong for about 2 years althouh is less frenzied now
at one point we had to read every no smoking sign as we walked through town! getting a loaf could be a lengthy business! Its amazing just how many signs are about.. He also likes to watch the same dvd to the exclusion of all others over and over and then one day finds a different one and does the same, it can be weeks! It makes him happy.... but I try to get him to try new things. I think it can be tricky (well for me anyway) I have found myself crying at the zoo because I want ds to look at the animals and he is crying because he wants to count the "Do not feed "signs!!! I think in some ways I do things for me as I think he is missing out, but maybe hes not? although I totally agree that the more things we can introduce our children to will help them to be able to draw on those experiences later and be able to join in
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Hi, My son started school last september, he sounds like your lad good with numbers and could read, within weeks he was a different boy.He had a 15hour statement but the school really didnt understand his needs, and as he wasnt a problem at school he was pretty much ignored. He became obsessed with phonics and could no longer read. His behavior at home was terrible, he was not naughty but simply distressed, bitting himself etc.After battle after battle with the school I removed him at the begining of December.I was all set to home educate but the welfare officer suggested a small village school. He started in march and things have been perfect. there are only 40 children in the school and they seem to care about sen.His reading is fantastic and he is looked after and understood. I will not be sending him to mainstream senior school.
It is really hard but I think that inclusion does not work. Often even with statement...
There needs to be more schools with provision and understanding of high functioning children.
Find out what is available in your area. good luck
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Hi,
My son had lots of problems when he started reception in september, he is a bright lad and not only learnt nothing but went back as far as his learning was concerned, He had a statement of 15hours and yet was still failed by the school! it got to the point that he was so distressed at home(apparently fine in school..)that I removed him in early december. He started at a new school late feburary and we have not looked back. He is once again the happy little boy he was and is learning fast and well he is very clever but really struggles with the every day stuff, which this school seem to understand and embrace.
If it looks like you are banging your head against a brick wall with school...... my advice would be change school! It is the best thing I have ever done.
I am just a normal parent now I drop my son off and I pick him up, with none of the worry or stress I had at the last school.
Good luck
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Hi,
I had a letter to say mumps is on the increase in our area. Ds had the mmr at 13 months but I did not let him have the booster. I do not blame the mmr for his autisum BUT the seeds of doubt were sown and I felt very strongly he should not have the second jab. My health visitor and the school nurse have been very keen for him to have the booster but my gut says no.
He is a very robust fit and healthy child, so should I worry about mumps?
I worry that by not getting him immunised I run the risk he could catch it, but my gut still says no jab. I feel between a rock and a hard place
He is doing so well, and has progressed so much I am terrified that of anything changing that.
any advice?
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Hi,
I totally understand the sence of loss, most of the time as ds is an only child and it is just me and him I am just used to him and our life feels "normal" but when we go to the park and a child 4 years younger than him is chatting away I really feel it and the difference in development is like a smack in the face. Also at school when the mothers chat and the children are all going to each others houses for tea I have been known to sob on the way home!
I get an amazing amount of joy from my son and go for months and months without feeling sad and it can be a family visit or yet another thing we are not able to attend that can make me fel this sence of loss. Not to mention peoples total lack of understanding! I took ds to a summer fate this weekend and he was very worried he might see people he knew,didnt want his face painted and had no interest in the boucy castle, and as I saw his peers and younger children racing around and having fun I felt a bit sad, BUT he is happy it is often me that feels I am missing out
I know just how you feel, but it will pass again if only for a while xxxx
thinking of you
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Hi I was told today that ds grandfather has passed away, he has been very unwell for a long time.I contacted ds greandmother even though there has been no contacct for 18 months to pass on my thoughts and condolensess. My mother encoraged me to contact my ex rather than just send a card as it was his father and my sons grandfather(although he has not seen his son for 2 years and does not phone or email) I called and when he heard my vioce said "what the f**k do you want" I said I am so sorry to hear about you dad. at which point he started to rant and rave using the c word so I put the phone down.
Just feel so sad. it is him that broke all contact with us and I felt I should pay my respects to his father. how can he once again feel its ok to swear and curse at me??? feeling very sad tonight
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Hi, we saw paediatrician who asked me lots of question and then spent an hour or so asking ds to do different tasks (puzzels and colours etc)
He then refered ds to CDC and ds attended one day a week for almost 4 months. At this point he was given dx and was discharged.
He did lots of activities whilst there and it was a bit like nursery, but he was being assesed. he also had additional appointments with a clinical psycologist,speach and language therepist and paediatrician during this time that I was able to attend.
My son was 3 and half at the time.
Before his first session alone at cdc the centres co-orditator had a good chat with me and ds played with the toys and was shown around, the next week when I had to leave him I was a bit tearful and nervous but he had a nice time.
I hope it goes well for you x
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Hi very good advice to speak to Ipsea they gave me lots of info so when I was fighting my sons courner I knew my rights. In the end I voted with my feet and removed my son for three months( and moved schools) but It is important you are listened to. Speak to Ispea, but also dont be shy to contact your education officer to express your views if the school wont or dont listen. You know your child best and what is best for them.
I wish you luck xx
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still crying from reading your post, your a great mum god its hard. wish I had some words of wisdom for you, but al I can say is going through exact same thing and it hurts. xxxxxx
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hi, my brother has just anounced he is getting married in spain in November. But he is rather put out I will not be able to go.... He knows his nephew is autistic but seems to have taken it as a personal afront that I will not be able to go! I have tried to explain that ds does not travel..... he is well aware that when our grandmother was very ill I drove 7 hours to see her and had to stay overnight at a travel lodge it was horrific it took two of us to get poor ds through the doors screaming and then a very difficult evening with ds begging to go home. I have decided that I do what is best for ds and that does not include a flight to spain! I feel so sad that his uncle cant understand, why would I turn down a week in the sun unless I had a dam good reason
moan over! but I do feel sad that family dont understand
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hi
i keep bursting into tears for no reason! all is good and since i moved ds to a new school everything is going great. but now the battle for statement is over and everything going ok i suddenly feel broken. my son is autistic...... i never gave myself time to except it i never took a moment to think about it. it has been one long battle with school and the la that i understand now has keept me from having to beleive my little boy has a dx of autisum. does that sound crazy? I am delighted things are going good for us with school but having nothing to fight and focas on has made me face the fact that this is for life and i can not make it better.... i must sound silly...... my beautiful son is autitic and i dont want him to be.....I am scared about his future I can not beleive it has taken over a year for these fellings to emerge i feel heart broken.
please tell me this is normal ??????!!!!
i must sound selfish
congratulations !
in Education
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Great news!!!!! Well done him xx