help..... im sinking

[bjkmummy]

i dont know where to start - im sat in here in tears and just feeling the im losing control of everything - so much is going on that i feel like im sinking and just want to go to bed and never ever get up again - just feel the need to list everything that is swimming around in my head at moment

 

i have ben who is 5 and autistic at a special school - joe who is 3 and also autistic at a special nursery and keira 3 who is nt

 

1. joe goes to a mainstream nursery as well. his twin went to the same nursery but she was copying his behaviour so moved her to a different pre school on the raf base we live in 2 weeks ago - was working well - this morning found out that keiras group is closing and is merging with joes group at xmas so why did i bother moving her!!! now she will have to deal with the change plus how is joe going to cope with all these new children coming into his nursery????

 

2. contacted social services a few weeks ago mainly for respite. knew not going to be good when 1st thing they do is give me NAS leaflet. my hv phoned thois morning to make an appointmet to see me next months. she mentions that social services contacted her and told her nothing they could do for me so im on the verge of phoning them to tell them not to bother coming to see me today cos waste of time if nothing they can do plus it means me taking joe out of nursery an hour early for nothing!!!

 

3. ben in tears this morning as he has just changed classes at his special school and a boy in the class picking on him. ben was hysterical this morning about not wanting to go. last week he came home with a bruise on his head where the child had hit him. nothing in his book from school about it so i didnt say anything but now ther eobviously is a problem. ben is also asking me to collect him from school which he never does.

 

4. ben has a review at school on 22/9 - im anxious cos i want them to start statementing him. he can only stay at his special school for one more year at it only takes them to they are 6 - there is a primary school with an as unit in town which i want ben to go to but i need to get his name down etc so i need things to get moving. theyve changed the date of the review once already. dh has booked the day off and weve arranged childcare for keira etc. i got an appointment ;last week for the twins to have their eyes tested as they have squints but appointment on the same day as the review so cancelled them and awaiting a new date in october

 

this morning have found a message left on the phone saying the school want to change ot to 29/9 so i could have taken twins for their eye tests after all and now dh needs to change his leave etc

 

5. ben has apointment to see his consultant on weds - no real concerns about this but just something else to worry about!

 

6. feel really unpopular and left out. bens school runs a saturday once a month club - i go every month and feel like a complete outsider - like i have 3 heads or something - maybe being over sensitive

 

think thats everything - also think i am hormonal so maybe thats why i cant stop crying!!! feel really down that social services are going to do nothing - i did expect as much but still feels like ive been hit in the stomach - i am going to cancel them coming cos i will lose it big time if they come to see me!!! and i dont want them to see me as a demented mad woman!!!!

Edited September 11, 2006 by bjkmummy

[bjkmummy]

well ive ohined social services and started crying!!!! they are getting the social worker to call me tomorrow when im less fragile.

 

i was also meant to meet someone for coffee this moring but they didnt turn up!! ( think that they had honestly forgotten as we agreed it a week ago and she has twing girls with asd)

 

have just phoned dh and he is going to meet me for lunch so at least i can speak to a human face to face and have decided to go and pick ben up from school today to show him that i am there for him which will be a nice surprise for him!

[smiley]

<'>

 

Hiya hun,

 

You must be exhausted . Hope hubby can make your lunch together .

 

Have some cyber hugs from me <'> <'> <'> <'> <'>

 

xxxxxxxxxxx

[Sarah666]

Hi bjkmummy

 

Im so sorry to hear that you are so low at the moment. Not able to offer much advice really, just plenty of <'> <'> <'> . I'm not having such a good time of things myself at the moment, so I really do understand how you feel.

 

Take care

 

love and <'> <'>

 

Sarah

[mossgrove]

There are days whjen it all gets on top of you, and things that you may have taken in your stride a couple of weeks ago make it seem like the whole world is against you, but it does get better in the end. Having two children on the spectrum can make the sheer number of appointments and correspondence overwhelming.

 

Hopefully meething DH at lunchtime will give you a chance to draw breath. And you are a good mother, even if it is hard to believe it when you are at the bottom looking up.

 

 

Simon

[forbsay]

Hiya

 

Sending you lots and lots of hugs.

 

Thinking of you.

 

forbsay

x

[UltraMum]

<'> <'> <'> bkjmummy <'> <'> <'>

 

You've a lot on your plate ...

 

Re the review I would tell the school that it's not convenient to change as you have already had to alter your arrangements ...

[marshmallow]

Sending you loads of Hugs <'> <'> <'> .

[oracle]

Is there anyone who can be with you tomorrow to bat for you when SS comes round to visit. Even just to be there, listen and take notes? Don't be put off and don't give up you 'can' get help and respite even if that means a fight. Do you have a local group who can help and support you? We do that for families here and it's amazing how just having someone speak up and out for you can help. You are in a tight spot and need help. It's not about waiting until you are in crisis SS are there to make sure the crisis does not happen.

 

Oracle

[Paula]

<'> <'> <'> <'> <'> <'>

 

No advice just sending these .I know what its like when it all starts to get too much.You feel like running away and never comeing back.

 

Hope lunch goes well.

[lil_me]

<'> Sorry to hear you're having such a rough time of it at the minute, you're not alone, never forget that. Thinking of you and hope things are better soon. Hope you have a nice lunch together.

[Flora]

<'>

 

It's just too much at once isn't it? I know it's no consolation at this moment in time, but things will feel differently in a few weeks. I know this because I have felt exactly the same as you. I've typed posts very similar to yours then deleted them....

 

Stay strong. I'm glad you've got a dh supportive enough to be there for you.

 

Take care hun, let us know how you are.

 

Flora <'>

[Bagpuss]

I'm so sorry to read this <'> <'> I can totally relate to the forces scenario....dh and I were both in RAF ...so I've been there, both as a serving member and as a forces wife living on camp. It can be isolating, especially as family and friends are usually far, far away and the continous movement causes such upheaval. Difficult to maintain long term relationships. I would certainly try to get someone round your house when SS come to speak up on your behalf. Are you under a RAF medical centre and medical officer? They are usually superb at dealing with families in crisis. I know in our day we had the Families Officer, but been a long time and not sure how it works now. My dh's boss/section were absolutely amazing when we went thru troubled times (my dh lost both his parents within 10 days of each other). I would also contact the school and explain the lengths you have gone to to make this review appointment and that you would appreciate it if the original date were kept. Please hang in there, you havn't got two heads, and your friend would of forgotton.......I know I get really tearful at that time of the month when life seems to be too much and things I would normally brush off seem insurmountable. I hope things look brighter soon and if you have want to PM me or chat via MSN please do. Your not alone hun <'> <'>

Edited September 11, 2006 by Bagpuss

[Karen A]

<'> <'> <'> <'> Hope you got out for a nice lunch.No words of wisdom but thinking of you.Karen

[bjkmummy]

thanks everyone for all your replies

 

just got back from lunch - dh was a bit worried but when i listed all the little things that have happened today he understood why i wanted to see him. he also got a salmon sandwich out of it!!!!! after dh left, some other people came and sat with me so it was nice to talk about normal things for a while

 

im going to go and pick ben up from school so that i can speak to people at the school to see why the appointment has to be changed again and also i want to see the specialist hv about joe as well so i can do a few things at once. when dh gets home tonight im going to go out to asda for a while to do some retail therapy!!!! its also my birthday tomorrow! but i am feeling better and stronger - i am quite strong most of the time but we all do have our down days however strong we seem on the outside. thankfully its places like this site that get us all through the tough times , where everyone understands and does not judge you but can listen and offer sound advice!!!

 

definately a bottle of wine and some choclolate tonight!

[hev]

retail therapy works for me every time,i normally buy food though!! glad you got a supportive husband and friends to sit with you,i have bad days like you then let it all out ready to face another day,hope you can get the school to stick to the original appointment,take care love hev xx

[DaisyProudfoot]

<'> <'> <'> Take care, it does get on top of us all sometimes doesn't it?

 

Advice: when you see the social worker tomorrow take notes because what you say and what they hear can be two completely separate things. Been there!

[smiley]

definately a bottle of wine and some choclolate tonight!

 

Sounds like a good plan!

 

Pleased you're feeling stronger <'>

 

xxx

[Karen A]

Yes nobody would argue about your right to wine and chocolate today. <'> <'> Karen

[bjkmummy]

well i went to the school to collect ben - spoke to his teacher and they said they would keep an eye on him re the other boy hurting him although today there has been no sign of any thing untoward. his teacher said yet again that they have seen no 'signs' of behaviour from ben. i asked about ben being statemented before he returns to the mainstream as hes in a special school at the moment - got the speech re not necessary to statement every child - made it clear i would be seeking a statement as i want guarantees that he will recieve help - we've been in the mainstream already and ben couldnt cope so will not put him through it again.

 

think my mood is a bit more serious though all the kids are at home and i just cant be in the same room as the - they are not doing anything major but i just have a need to be away from them. its tea time and i have no energy to get them something to eat and fell as though i cant be bothered - they have just had ice lollies on the way home from school but i know that i should be iwth them, chatting to them about their day and inter acting with them but i feel nothing for them. i just want to sit and cry and lock us all away from the outside world. im fed up of being made to feel that im an outsider. i honestly feel today that ive come across as one of those parents who has made it up about the children even though we have a written dx etc but that ive imagined it and no one else is seeing or dealing with what i am. just walking back from nursery with joe and keira and ben had a major melt down cos i asked him to stop at the road yet an hour before his teacher telling me that they see no sign of any behaviour so is it me??? i know that ben has aspergers but im questioning it and i feel like people think i exagerate his behaviour for some reason - i would give every thing in the world i have to take the aspergers out of ben and for him to be able to have friends etc. i fell such a failure - ive fought so hard for the dx and nows hes got it people are trying to tell me that hes all right really and doesnt need help at school. he should be in year one now but cannot recognise letters or numbers etc so hes going to be so far behind his peers when he returns to the mainstream. i feel like im staring into a big black hole and want to step in it and never come out of it again - that what is the point of trying to help the children when at every turn i get a sledgehammer knocked against me. im just waiting for dh to come home and say hes off to afghanistan at any moment - i can so feel that one coming. i just want to give up but i know i cant cos of the kids who need me and without me who will fight for them???? i have no family - dh family dont want to know - i lost my mum a week before the twins were born - i buried her on the friday and had them on the monday and now 3 year slater have 2 with autism - where did it all go wrong??? i lost so many friends when the twins were born as my so called friends were worried about me going to visit with 3 children!!! god help them if they now knew that two were autistic. i feel people avoid me cos i must have a big black cloud over my head. i take no care in how i look anymore - i look like an old bag woman most of the time although the kids are always well turned out - not fair to drag them down with me. i have managed to lose 2 stone of the weight ive gained but i still feel like ######

 

anyway off to have a good cry and get the kids their tea - many thanks for listening so far

[UltraMum]

<'> <'> <'>

[smiley]

<'> <'> <'> <'> <'> <'> <'> <'> <'>

[keepingmesane]

lisa ((( )))

 

is there anything i can do to help?? i know im not near you but so wish i could be there to support you

you have so much going on and im not surprised how you are feeling, ive felt similar over the last few weeks. you are doing a fantastic job so please dont feel guilty.

im around if you want to talk

 

thinking of you (( ))

[curra]

Sending you lots of <'> <'> <'> <'> <'> <'>

 

Many of us have been through similar days and you will be understood here. Try not to blame yourself and take care of yourself too. Things do get better.

 

Curra

[dooday24]

<'> <'> <'> <'> <'>

[oracle]

I think you need some hands on help and I am not surprised. Just living with the fear that your hubby could be posted to Afganistan would be enough to make me feel ill.

 

One of the hardest things to live with when your child has an ASD is having to prove that it does have a disability. People, mainly teachers and professionals are constantly trying to make you feel as if there is not a problem. It can get to the point where by you ask yourself is it me. The answer is no it's not you it's them but sadly because you can't see autism it is not taken seriously until it jumps up and bites you on the face.

 

Do you have a support group because they can help you to feel more confidant because they will believe you and understand. There is also the Carers Centres they often work alongside SS and have people who can attend meetings with you and support you. I have no idea where you live - sorry if I have missed that - but there should be a list of groups in your area. For starters there could be a Network 81 befriender who could into school with you and help sort out a statement. It would help to take the pressure off you a little.

 

Oracle

[stressedmumto2]

Sending you lots of hugs. I think most people have days and weeks of how you are feeling right now, I know I have so please don't feel guilty about it. If you need time out, just in another room then do it, play some music to try and soothe yourself and calm yourself.

 

I'm glad you and hubby met up for lunch, it's nice just to get away from the house and have adult conversation and it's good for you, when they are at school, nursery try to do more of this for yourself I know myself even trying to go out for a night at least once a month makes me feel so much better.

 

Tonight I would make a list of all the changes you would like to happen that can actually happen, respite, holiday schemes, help in the home, some areas do it.

Don't let the social workers, health visitors tell you you can't get help. Help is out there but if you just accept it when they say there isn't any help they will go away thinking you are coping, breakdown in front of them if that is how you are feeling, don't hald back let them see how this is affecting you.

 

Sending you even more hugs and hope everything goes well for you with your coming appointments.

 

Take Care <'>

[forbsay]

Sending you lots of hugs.

 

People on this forum totally understand where you are coming from and we will not turn our backs on you.

 

Take care

 

Forbsay

x

[oxgirl]

Keep typing down your feelings to us bjkmummy, let it all flood out onto the screen and let us share some of your burden with you, even just putting your emotions into black and white will be some sort of relief. We all know what it's like to feel overwhelmed by it all and to feel like it's crushing us, I know I do. One day soon you'll feel things getting better and pouring out how you are feeling will be the first step.

 

Take care. <'>

 

~ Mel ~

[lollypocket]

Hi,

 

I am sorry things are so bad for you right now

 

I think you need to see your GP and discuss how you are feeling as you sound depressed (sorry if I am stating the obvious by saying that). I was in a really bad place two years ago, didn't know my Son was ASD then. I wasn't coping and had lost 'the will to live' basically. Had I carried on the way I was going I may have done something stupid.

 

I saw my GP and HV and was given antidepressents and sent for a course of Cognitive Behaviour Therapy. I won't say that it made me the life and soul, but it made me able to cope better.

 

I would keep knocking on the doors for hands on help from SS or whoever, but think you need to see someone about your current state of mind. If you speak to the GP and explain what is making you feel how you do, he/she may push for help on your behalf.

 

I hope you can get some help soon

 

Best Wishes

 

KW

[nellie]

I'm so sorry you are having such a tough time, you have a lot to deal with, sometimes it's like plodding through treacle. It's not your fault the system is failing you.

 

I agree with Oracle I think you should contact some of the voluntary agencies for support, the Carers Centre is a good place to start, they will help you deal with Social Services and tell you how to request a Carers Assessment. http://www.carers.org/ At least you will have someone to share your problems with, someone who understands.

 

There's quite a few special education support lines, they all give excellent advice and support. You can find all the details here. http://www.asd-forum.org.uk/forum/index.php?showtopic=676

 

I'm surprised your son is in a special school without a statement, I could be wrong, but I thought a child needed a statement to be in a special school unless it was an emergency placement. It's worth discussing this with IPSEA, the NAS or Network 81.

 

If you have a good GP he might be able to get you some help and support, it's certainly worth having a word with him.

 

Take care, I hope things improve soon.

 

Nellie <'> <'>

Edited September 11, 2006 by nellie

[Platefull of Love]

<'> <'> <'>

[UltraMum]

Some more <'> <'> <'> for today

[Valiant_Skylark]

Today's dose of <'> <'> <'> <'> <'> <'>

 

Thinking of you. Take care VS xx

[hev]

how are you feeling today? i think what oracle said about us having to prove our children are asd is so true,it makes me so mad,as if we would lie!! keep typing away to us,i cannot do hands on help but i find it helps to type how im feeling,got to let it out somewhere.

let us know how you are,we do care,genuinly,as most of us have been where you are now <'>