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Here are some suggested organisations that offer expert advice on SN.

just needed to let off some steam

(39 Posts)
bubblagirl Wed 25-Feb-09 18:05:42

ive had such a bad day today ds has been much better though

but at the drop of a hat i could cry i sat here last night and thought i knew ds was autistic but as i didnt have to contend with all the traits at home i guess i neverr really took it in

but now he doesnt sleep he is sensitive to sound he shuts himself away all day started to harm himself its actually occurred to me that his autistic

i feel like his just been dx all over again and i feel stupid ive known for 9 mths and although i got used to it and took it really well im wandering if its all been for show as now i feel im out of my depth my parenting skills arent very good and im scared to leave the house as i cant deal with the melt downs and i just want to cry

and then i hear such sad news and the worries that other mn are going through and i want to cry ah gain i feel daft my worries are hardly the same i should stop feeling so sorry for myself

nobody needs to reply im sitting here alone and just need to speak

2shoes Wed 25-Feb-09 18:06:49

sorry you are having such a crap time.
how old is your ds?

bubblagirl Wed 25-Feb-09 18:13:29

he'll be 4 in april just feel sad as i have known all this time he was autistic but never had to really deal with the behavior but now im lost

and i said to dp last night in all honesty im think we still expect him to do what nt children do dp says he shouldnt be on games console so much and i dont think he should be in his room all day but in all honesty its not unusual for an autistic child i was reassured of that yesterday and feels like ive been slapped in the face as im dealing with things im not used to or i dont know how to deal with them

and also because he is suffering at pre school from lack of sleep there progress as been halted and his becoming clearer that his not like all the other children and i guess im worried for him starting school in sept etc

as soon as we see this paediatrician the better in my eyes but they are hugely delayed so could still be along wait as we should have been reviewed in dec but thats how far behind they are i want them to help him with his sleep as his so different when his slept well

sorry im going on will go to bed soon i think escape the day lol

2shoes Wed 25-Feb-09 18:54:57

if he is only diddy, youa re probally greiving. to find out your child is not "nt" is a terrible shock and it is like loosing the "nT" child. be kind to yourself. xx

bubblagirl Wed 25-Feb-09 19:00:49

thanks honey don't worry just having a bad day thats all lack of sleep and just feeling sorry for myself all will probably seem brighter in the morning after all i accepted it and i have to just get help when i struggle with new behavior xx

jennybensmummy Wed 25-Feb-09 19:02:34

hiya, sorry didnt want to read and run but have to be quick as just about to have my tea! My son was 3 in november and is autistic, he was diagnosed back in may last year but i still have days where i just want to sit and cry. Ben has a lot of behaviour problems, from bad sleep to headbanging and violence. If i can help or be a shoulder to listen im here and ill be back on later, or my email is jenniferault @ if you want a chat xx

bubblagirl Wed 25-Feb-09 19:04:07

thank you so much thats really kind of you i'll keep note of your e mail just in case and also if you need to talk with me im here too

bubblagirl Wed 25-Feb-09 19:07:55

ive sent you an e mail forgot to write my mn name so if strange person beginning with s contacts you its me

HelensMelons Wed 25-Feb-09 19:22:14

Sorry your having such a crap day bubbla. Know how it feels at times. DS2 got a dx in Feb 07 of asd and I still have those moments when I just have and need a big cry.

Hope tomorrow is a bit better.

siblingrivalry Wed 25-Feb-09 19:32:39

Hi Bubblagirl

I really feel for you and what you are going through -I'm in a similar position myself.DD1 is going through ASD dx.

For what it's worth, the lack of sleep is a major factor in making things feel much worse;it just isn't possible to keep functioning properly with a huge sleep deficiency.Sleep deprivation has been used as a form of torture, after all! Do you have anyone who would take your ds for a couple of hours, just so you can go back to bed? Sometimes, when I am wiped out, I have a lie on the sofa while dds watch a dvd.

I think that accepting that your child has SN is a roller coaster, with days when it all feels unbearable. Just remember you are never alone -you can post on here any time. I am also on TTR if you need a chat.
I have also has a terrible few days with dd1 and felt that I just couldn't cope, but it did pass and today has been much better.

You will have 'good' days, but I think that you are so exhausted at the moment that you need rest more than anything.
Take good care of yourself- you are doing a great job smile

troutpout Wed 25-Feb-09 19:48:48

It will get easier bubbla..i promise it will. I'm not saying it won't get harder again at some point..but the phases come and go...and you will be able to deal with them better because you will have seen most of it before.
I had complete periods when ds was little where i could have sworn he was nt...and then it would all go pear-shaped and i would really feel out of my depth with him.
There was a real period of grief for me ..2 shoes is right.When you finally recognise it for what it is like your life changes in an instant.You sound like you may be going through this now so don't be hard on yourself's ok to feel sorry for yourself too

5inthebed Wed 25-Feb-09 19:48:56

Bubblagirl, I had one of these day yesterday, and could have really done with a <<hug>>.

DS2 was dx in Feb last year, he will be 4 in August. I would say we are still learning what his autism is, and I guess he is also "developing" into his autism as well. Ds2 has always woken a few times a night, but used to play quietly with a toy in his bed. Now he gets up, turns on lights all over the house, turns on the taps in the bathroom and kitchen (if I forget to lock the baby gate) and once turned the gas stove on. Luckily for that one I was up feeding ds3.

I know exactly how you feel, and am always here if you need to chat, to let it out and just to be made to feel that you are not being paranoid and that you are not the only one who has to deal with it. I am on MSN if you would like my MSN address.

Hope you have a better day tomorrow.

jennybensmummy Wed 25-Feb-09 19:50:56

hi bubbla, not got an email?! got a windows live request but i joined that ages ago and lolst password so not got it sorted yet!! am on facebook tho!

Peachy Wed 25-Feb-09 20:03:26

bubbla justwant to say you are responding normally

my asd boys are 5 and 9 and i ammuch further diown the line yet i have days where i feel exactky as you do now

sleep, rest as best youcan, and hugs

bubblagirl Thu 26-Feb-09 08:25:16

thank you all for your kind words its been hard to work out why i feel the way i do i know it stems from lack of sleep im struggling more with his behavior as it worsens with no sleep

just felt like im only just accepting it even after knowing all this time i guess its the new behavior im trying to accept as it makes him appear more autistic than he normally does

anyway my dp and i had huge row last night so wasnt the rest i was after but ds went to sleep in his own bed and stayed in it first time in months

i feel much more better today i guess it doesnt help me and dp having problems either so im trying to cope and be strong with everything but i feel more positive today thank you glad its still normal to have bouts of being sad and feeling the way i have been

thank you all and sorry your also having these feeling s too its so hard isnt it wanting to be strong all the time but you have one day where you feel you have been tested to your limit and crack under the pressure at least we all have each other to talk to i dont think you all know how much that means to me i really wouldnt cope if i didnt have someone to talk to thank you all xxxxxx big hugs to all needing one

lingle Thu 26-Feb-09 09:13:01

Hi Bubblagirl, morning to you.

I've followed your story since your first report about the assessment in DS's nursery. I understand what you are saying - you had the diagnosis, then you adapted to life "with autism" - but suddenly you have to adapt all over again, just when sleep deprivation is diminishing your strength.

Since the diagnosis you've supported other people on this board so much. So everyone is going to be only too glad to provide support to you now. If only we could think of a magic forumula to improve that sleep situation.......maybe you'll get some posts from people who've had some success with sleep strategies.

bubblagirl Thu 26-Feb-09 10:41:16

oh thats really kind lingle thank you its good to know that i have managed to help others with my experiences also i dont ever think of that or that i do

thank you for following our story also and giving me non stop support and listening where others cant be bothered to

i have sn hv coming to see me monday i'll probably cry so hopefully she'll get paediatrician appt quicker regarding hias sleep and hopefully get melatonin that would be huge help as he is so different when his slept and so am i lol

hereidrawtheline Thu 26-Feb-09 10:51:01

bubblagirl, I havent personally tried this yet - I have bought it online but it hasnt arrived yet - but I have read wonderful things about weighted blankets helping ASD children sleep. We are in the same boat as you so I know how hard it is. The weighted blanket I bought came from here and yes it is expensive but to be honest after a night of a 6 hour meltdown and much else I decided a one off expense of £100 would be acceptable if it sets a happier pattern of life in motion for all of us early on. Perhaps you could look into that as well?

bubblagirl Thu 26-Feb-09 11:01:57

i'll let you tell me how its worked for you and i may well consider this at the moment haven't the money as just done all his room and bought new bed etc so his money has been spent on trying to make it de cluttered fresh and nice but if you have luck may well with his next payment look into getting it thank you

hereidrawtheline Thu 26-Feb-09 11:03:55

that's alright bubblagirl I will let you know how it goes when it arrives. I know its a lot of money isnt it. And lately we have spent a small fortune on books for me to learn about ASD and stuff to help him etc.

You may be eligible for DLA. That might help? We are in the process of filling out the bloody long form now.

bubblagirl Thu 26-Feb-09 11:08:04

we have dla and that's been all used for now has paid for all his room to be done to try and make it more comfortable for him calmer colors new bed new items everything lol

it pays for his therapies so need next payment to come in we don't have much spare after bills out of our money so we use his for things for him to try and help as his young still so seems good to put it to some use and he loves his room now

nice calm and has trampoline in there now so he can just bounce and watch tv and use energy on the bad days that he other wise wouldn't use

hereidrawtheline Thu 26-Feb-09 11:13:05

thats really good bubbla that the DLA is at least helping you help him. Be proud of yourself for putting so much effort into your child. I know we all do but really I dont mean this in an ego way at all but its a bloody hard job and someone has to do it and we are all here because we want to do it well.

bubblagirl Thu 26-Feb-09 11:21:40

thats right good luck with dla form it was probably the hardest thing i had to do writing so negatively but he was awarded high rate care due to his lack of sleep

just make sure you write it as it is however bad

we all want whats best for our children no matter the struggle i wouldnt change it i just need help improving and understanding the new challenges i can take it all in my stride but when i get to a place ive never been before i need direction i need to know im going the right way and thank goodness for that help on here

hereidrawtheline Thu 26-Feb-09 11:26:06

yes bubbla I know what you mean. I actually in large part owe it to MN that things are improving at all.

I am finding the DLA form hard too as its depressing and of course you have to repeat yourself every question a million times.

bubblagirl Thu 26-Feb-09 11:33:04

yes but when its done and you get what they deserve you realise its all worth it the repetitiveness was annoying

just do bit by bit and big hugs to ds and then back to it its just something that can help improve there life with that extra support from that money

ds has new games and new bedroom music therapies ,dvd's we couldn't afford to do this otherwise

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