At home mum

hi dolphin ,how was your weekend? my 2 went out and hired a canoe ,my husband want's to buy one now .I bet u he won't be able to move tomorrow when he starts back at work lol.  I wish i could of gone but my body just can't do it ,"never mind" hope your ok .m x

Hi Dolphin

I am sorry to read that you are having such a tough time.  TEA is absolutely right.  We are all here to support you.  If it helps to get things off your chest then this is the place to do it.  We all have some understanding about at least a small part of your difficulites at the moment.  So please post your concerns and we will all try and see if we can help and support you.

All the best

ColinCat

Hi Dolphin,things seem really tough for you having fybro and type 2 Diabetes.The great thing about our community you can just let it all out . how do u cope with your fibro ? x M

Hi Tea

Don't mean to push services that you may have already tried but have you contacted the Education Rights Service. They'd be able to talk through your options for your daughter and it sounds like this could be a real help for you right now.

You can find details of the service and how to contact them on this page:

http://www.autism.org.uk/educationrights

Sorry if you've already tried them and this is just repeating what's been mentioned before. But if you haven't, I'd really recommend giving them a call.

Hello can't sleep tonight worrying about my daughter ,in my hart of harts i know i'm sending her to the wrong school but at same time i feel i have no choice ..........or do i ...............Idon't even drive i feel useless your children trust in you to do the write thing ......i'm letting her down the system makes it hard there's no one to give guidence .my husband does nothing lets me do it all .......no strengh at mo due to my fybro /fatigue .has any one had a simular situation ,i sure could do with some advice 

Thanks..I feel we are at the very start of a long journey..when I explained to the teacher about DS meltdowns after school she looked so sad for him. She also said 'whatever's going on for him and whatever the cause his frustration and anger are very real and we need to help him through it'....I felt so heartened to hear her talk this way.

Hope you have a good weekend.

J

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Hello ,so glad every thing went well for you at the school   :)   and it's fantastic that you have got groups that your son is going to enjoy and you can meet other parents all in all a good day then ,  hope you enjoyed your take away tonight just what you needed i bet . m x

I had a sneaky little lie down this afternoon before I did my visit and talk at the school...it went well and DS teacher is going to get the SENCO involved..We have been given lots of details this week for out of school activities for kids with disabilities..so off to visit on tomorrow afternoon.

Booked some more activites for August so I am feeling like I will be able to cope better over the Summer holidays now. 

If you can face your 'friends' it might be more energising to go out and have a change of scene..works for me sometimes..just depends on how draining the company your in will be.

My partner has just nipped out for a take a way..am hungry now.

J

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Well it's friday!!!!! meant to be going out saturday with our 'so called friends'but don't think i'm up to it ,got no enery this week .My garden has gone to pot.... HAY HO.....LOL  What you doing over weekend ?? xx m 

Hi ya J !!! how are you today ????......................... what i do now wich i find really use full ,as my memory is soooooo bad i write every thing down in a book ,eg...a brief description of your day with boys ,WHEN YOU VISIT YOUR SONS TEACHER WRITE EVERY THING DOWN,WHAT YOUR FAMILY SUPPORT WORKER SUGGEST write it down  .................................Do a list of all your concerns ,with this daily diary plus all your other written information it will make you come across clearer and you have all the facts and info to leave with camh it will make your case stronger  .Remember its not just there observation that counts its what your telling them as well wich is just as important they (HAVE)!!!!! to take that into account .I know it's tough  but you will get there xxxxxxxM

I am seeing the teacher to discuss our 'suspicions' and mention that my partner is suspected of having AS. I know she is seeing some of the things I am but I don't think she joining the dots up in the way I am etc.

Hi hope you have a better day sweetie. You sound down (understandably)..some days it hits you like a brick and you feel you don't have the energy to explain or deal with one more issue..we laugh about the day we call 'The day it all became too much'..it ended up with me trugding across a field full of cows in my pink fluffy slippers because I could not cope with one more demand being made on me by my partner or the children 

Good news about your daughter doing the full day and wanting her uniform a real bonus..nice one.

My parents live about an hour away and as I am an older mum they are both in their 70's now. They are lovely people but like you say they forget...very rarely they have the boys for a day..afterwards they laugh and say 'gosh how do you get anything done? It's full on all the time with these two!'

Got some leaflets on the parent partnership yesterday..so that's on my 'to do' list. Awaiting CAMHS (that's and AUgust appointment). Spoke to the parent support worker who deals with school..getting mixed messages off her and the teacher. Teacher says to me DS is having problems with anger and socialising..but when support worker speaks to teacher she comes back and says everythings fine..so that's conflicting.

Am reading the Asperger's couples workbook..so far it's brilliant and it describes how my partner views the world, also how the NT partner can feel depressed and frustrated when comunication breaks down. I am finding it helpful to see things from my son's and partners world..good stuff.

I think from what you are saying your health problems are more of a problem when you are under stress, it is the same here with me..my pain has gone through the roof this last 2 weeks. I am having a quiet day today to try and build my reserves a bit more.

You are doing in a good job there and the fact yesterday was a success just proves you are...keep going and big hugs to you.

J

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Hi J bit fed up now ,i wrote to you  then lost it all not happy...O...managed to stay a whole day at school and she really enjoyed her taster day .The best thing was she actully wanted to try the uniform on tonight ,now!! that's a first for .....O.....hubby came with me as i did not feel good ....................Nice your parents had the boys..................parents always say things like that when they look after or see their grandkids, its for short periods of time and most of the time i'ts all about treats and spoiling them i'm sure they forget what it's like 24-7 .........................and it's even harder when your children have other issue's .You do begin to realise that unless you've lived it and had that worry and stress no one can truly under stand .do your parents live near you ?? i wish my mum was living closer to us . have you spoken to your sons teacher about you concerns and you could try parent parnership they would be a good place to start ....... who have you spoken to so far ,and what have they said ?? 

Hi sweetie, sorry you have had a toughie again. DS was problematic today because he was back to school. My parents came round to collect the boys from school but before that my father tried to tell me that DS was just naughty etc etc. 

Then he went on to add that DS was 'always alright with' him..I assume the inference is that we as parents are doing something wrong...again. I pointed out that on the rare occasions he saw DS it was such a treat it distracted him from his anxieties.

Dad did back peddle then at his mistake and said 'of course you are a really good Mum and very patient with him'...but I still felt very hurt by it..as you do. So I understand what you mean..it's always tough when people just don't get it.

You must be apprehensive about tomorrow I hope it goes OK for you both...don't you sometime just want to gather everyone up, close the curtains and tell the world to go away some weeks!

Just found out our local CAMHS have a new guideline that they don't refer families on to other assessments until they have participated in the Positive Parentling Programme...I am not against the programme but it feels like another long winded hoop to jump through towards assessment..all this time DS school days are ticking away...sigh. I will have to see if there's room for negotiation on that one.

Am seeing DS teacher on Friday after school..am very nervous about it, especially after what my dad said today. Was what your friend said a similar sort of thing to my parents remarks?

J

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Evening  J,how's your day been today ????( with you )       hope youv'e not been to bad .Boys better now ??? .... my friend upset me today but.... hay ...ho she does'nt understand .my daughter came home from school early today because of her bowel problems third day running .................................... hope she's ok tomorro as she has her taster day at her new secondary school ,fingers crossed she goes .       m  xxxx  

Hi Westie Mama this makes such a change i'm so used to people being busy ,never ill the perfect children wasn't  until i came on this site you feel a belonging to people who are experiencing simular things and people who will listen and care. your day's seem very much like mine at mo................i too only get to go out when my husband is home ,here if you want to chat

I'm at home all the time too and am having a pretty miserable day today.  Feeling very sad and lonely.  My husband works very long hours, he leaves at 6 and gets home at 8 and I'm home alone most of the time as my daughter disappears off to her boyfriends at every opportunity.

I realised earlier that I haven't been out of my house at all, apart from putting rubbish in the bin, for nearly 4 weeks.  I can't remember the last time I had an actual conversation with anyone other than my husband or daughter.

I need some serious happy thoughts today.

Thankyou  J  ,i too get a lot of aches and pains my meds don't seem to be working any more ,my doctor said there's nothing else she can do for the pain and fatigue this has left me feeling quite low and not wanting to pester the doctor any more............. sorry J i don't want to drag you down.        M xx

Yes I do understand I have exactly the same issues. Am attending a chronic pain clinic soon the 'try and get my life back'.

You can talk to me anytime.

J

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morning !!!!!!!         I have become very isolated ,when my husband is at work and now i have my illnesses ,coming on to this site has made me feel i'm not alone and now i can chat to people where we can support each other .... thats great thankyou .

Hi I'm new too..I have chronic illness too and am looking after twin boys (they are 5 soon).

One son is awaiting assessment and so is my partner...I have just joined and everyone is SO helpful and kind. The people on the helpline are fantastic too.

Take care

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