feeling really low last few days someone give me kind words to pick me up

[bubblagirl]

well as you know ds has been diagnosed ASD been filling in forms for DLA well attempting to friend is coming sunday she is social worker so knows how things need to be worded

well it has made me feel so low i think ive not wanted to believe anything is wrong have managed so well with being positive and seeing things as a bigger brighter picture

but now i realise my ds is so different from other children his age im finding im getting frustrated with him and its annoying me that we cant communicate

yet we have been so close as i understood his needs more

why now am i feeling like why me why him

crying as im writing this as shouted at him this morning and kept thinking why cant you just be like other boys your age after half an hour of just whining and not knowing what he wanted

i know its not his fault and i love him more than life itself

and i also know its because its sunk in after doing that bloody form ive been in denial not seeing him for what he cant do but what he could do

now i seem to notice all the things he cant do and im so sad cant explain the heaviness in my heart and the pain in my chest and just keep crying

sorry just needed to say something to someone as dp is away and feeling so alone

im going to go and smother him in kisses and give him the biggest cuddle

poor mite probably has no idea why i keep getting cross and that makes me more sad im going to have to make it up to hi today

my bacon sarnie was gorgeous ds was all excited too bless him

thanks mum23 i have only written some in book waiting for my friend to help me word correctly bu thave added a4 paper with the extra bit sabout my ds the fact he doesnt like his head touched combed washed and he has fear of bath so is too dangerous now to attempt to put him in bath as throws himself around too much a danger to me and himself

at the moment his ok with food and platess

cannot do certain things like add gravy or he'll freak out and not eat food he has to pour on himself

but nothing to much in feeding area

more social communication danger awareness

i have written incidents and things on seperate paper

and my friend can help with formal jargon in book so hopefully it wilol strengthen his case

should say 3 a4 paper both sides so 6 of all other info

The whole danger awareness issue is awful. I always feel really sick before going to new places on days out. ds once ran into an adventure playground slide that I thought was enclosed - turned out to have all sorts of bits veering off at all angles, including a maze bit, also lost dh and had two little ones screaming for attention. We did manage to reunite quite quickly but really scared me cos he wouldn't even be able to explain to anyone if he was lost.

yes i know sounds silly but hadnt taken ds on a train since he was about yr

used to make me shake with fear what if he starts creating what would i do wouldnt be able to calm him down what happens if he just wanted to get off how would i get him home

well became brave took him to romford only 3 stops thought if worse come to worse i could get off at harold wood and get train back only one stop

luckily he loved it and had a great time but i was nervous wreck getting on now i am ok ahve been back 3 times

just doing new things new places scared of how he'll react but more so to the looks we get when he does create

also danger issues such as being unable to let him go off like other children in case he doesnt come back same reasons wouldnt be able to say he was lost

so scary i envy the children that plod along after there mums when walking down the road couldnt do that with ds at all

yeah - I think the walking along bit is the thing that really makes ds stand out. He is 8 now and even my 3 year old will walk by me without holding hands but although 99% of the time ds1 would probably walk very nicely next to me I just can't risk it cos of the 1%. I bought these id bracelets that I am def. using next time we go somewhere busy and we are drumming name and address into ds. still never quite relax though! On a plus note I don't get so stressed about tantrum type stuff anymore cos I just figure it's no-ones business and they can poo off!

lol good attitude i am getting there at least he doesnt do it often but when he does i know about it

i dont apologise for his behaviour anymore as im not ashamed of him used to always feel i had to apologise for his behaviour not now

he is who he is and if others cant accept him then its not his loss he couldnt care less but they miss out on a wonderfully bright child that could probably teach them a thing or to

id bracelets sound good idea may get one for my ds how does that work regards to name and stuff or is it justa number and address on them

The ones I got are quite basic(mothercare) just write name address/no. I think - I s'pse it would be useful to put some reference to asd on it though.

well i will have to look into that not sure about putting ds name on it though will ask SN teacher as id be worried about wrong person getting him and knowing his name

feeling much better now spoke to dp who is working away he was slightly more supportive than normal which helped he has trouble with emotions

ds has just eaten all his dinner and asking for more and for once didnt over cook whoops

thank you all for your kind words and support i really do appreciate it iis suprising how lonely you can feel at times

well ds is asleep and i have now eaten my dinner feeling so much better

thank you again for helpful advise and words of encouragement

Good point about putting name on the label - I guess if you just had a mobile no. on it then if you were in a park or somewhere someone could just ring you - I'd be interested to know what your teacher recommends. Glad you're feeling better!

yes feel so much better put loud music on had good song and dance with ds just acted silly had fun and sang really loud mademe feel so much better

i just worry if someone addressed him by his name he might think it was ok to go with them and it may not be someone with the right intentions

i doubt very much he would tell them so would actually know what safety measures we can take i'm at SNAP on monday will ask what she recommends

I know exactly how you feel. On the day of my ds's dx, I was 'fine', didn't cry in front of all the professionals and held it all together. The next day I crumbled, at home where I felt safe. What I'm saying is that even when you are 99.9% certain that your dc is on the spectrum, you still do not want to hear anyone confirm it and you still hope that they might suggest that the problems are down to something else.

It is also crap to have to read all the negative reports about your dc and to write negative comments yourself (such as on the DLA form). I also hated the intrusion into my privacy but of course, I slowly got used to it.

My ds was also unconcerned about dangerous situations. He would run off through gates, vault over park fences (once he did this and ran over to a double decker bus to bash its sides, luckily it wasn't moving), climb up high, hug dogs and all sorts of other heart-stopping things. It was horrendous. BUT, he is less manic now and although he still has a reduced sense of danger, he is slightly more trustworthy than he was 2yrs ago.

All I can say is that with age, things do improve. Your ds will continue to develop at his own pace and the those elements of his behaviour that your find tough right now will slowly improve. He will continue to learn new skills and he will probably surprise you with what he can do and what he understands.

Your poems made lovely reading, I hope you feel better soon.

That's true about the invasion of privacy. I'm naturally quite a private and almost painfully shy person but I've found I've really had to change for ds's sake. It started with all the healthcare folk, inviting strangers into my home to observe us (reeeeallly hated that) and then gradually had to get more ballsy righting stroppy letters and telling headteacher he was talking rubbish. I hate offending or angering people so this stuff really went against the grain. The flipside is I'm not a quiet little mouse anymore and I think all my children benefit from that.

THANK YOU MMAJ it is lovely to hear your ds is doing well i know with my ds i still have the normal 3 yr old behaviour in there as well as the lack of awareness so hopefull with age it will improve

he does take to listening to me more about danger but still climbs up onto arm of sofa to dive off time and time again

he just copies and memorises what i say it hasnt sunk in bless him

i'm very wary of anyone else other than my parents take him as they dont quite get it they believe he is just normal 3 yr old boy and that makes me panic think 'ill write list of what to with him as dp parents want to take him out for day and gut renching just thinking of it

seuss i've heard it can be very intrusive not experienced any of it yet so really nervous about that i wouldnt say i'm shy but i'm no where near as confidant as i used to be and do like my home as my safe place

well i am feeling ok today lovely lady from mn is coming to see me so i'm really looking forward to meeting her and dc

and having an adult to talk to been on my own all week with dp working away he is due back today or tomorrow and then back off on tue so wont see much of him at all again as out all day monday ds pre school and snap

anyway thanks again for yesterday strange day just made me realise the DX wasnt a mistake guess id convinced myself as much as i had excepted it that it could still be wrong but now i have seen his needs for myself im more aware and open to it all now xx

Do you find you have to remind yourself that some of their odd behaviour is just "toddler" behaviour and not a product of their "issues". Don't you hate it that you have to agonise for days about things other people take for granted - leaving them with a babysitter, school trips out, going to the dentist, having other friends over for tea (I make a point of doing this with my friends similarly aged NT kids, just so that DD learns how to behave around others). You have to fight for everything - can't just wave them off to school like every other parent but have to fight to get them the support they need (I'm going to start next week to get DD accompanied at school. Was hoping that the school would do it for me, but they obviously aren't going to so I'm just going to have to push and push until it happens).
LOVED the poem. I felt that way a few months ago - particularly wanting to scream at DD for not being normal. I also have panic moments that DS is going to be exactly the same and WHY do I do that? It's not like I'm going to love him any less!!
I miss bacon sarnies. And curly wurlies. Would love a bacon sarnie with brown sauce, and a big glass of hot ribena right now. Can't get any of those things in France! Oh well, will go and raid the fridge for chocolate instead.

DD does the sofa thing!
I love mumsnet. I love my freaky weird kids. Although I do wish DD would go to sleep tonight as it's half past ten here and I can still hear her chattering away.

My DS1 (ASD), 3.4, rides on the buggy board (tethered to me by wrist reins, natch! ), with DS2 (13 months, apparently NT) in the buggy facing us. The other day, the baby was blinking at me and laughing; I couldn't work it out until I heard DS1 laughing as well. The baby wasn't blinking at me: the kids were blinking hard at each other and laughing.

Only SN parents would get how wonderful that is. I hope you feel better soon, bubblagirl. Off now, but wanted to share that xx

thanks every one glad to know im not the only one having to do all these things sometimes you forget others fele the same thats what i love about being on here

i know his normal toddler behaviour and can get round that its the behaviour that no matter what i say he cant hear me and i cant calm him down just fixated on that one thing

i just wish it wasnt so hard but i know no different either really and apparantly make it look so easy so even if i am finding it hard im glad it doesnt show