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

Post diagnosis is the hardest time as you are still comparing DS with fully NT children. I never really think about NT 4 year olds now, after all I won't have one for another 2 years ( DS2 is not 2 yet). I find it helps to focus on how much DS1 can do now as compared with last year. ASD means delay in development and possibly disordered development but it is still development. Also I once read a little poem on another web site for children with SN, it was a bit Hallmark greetings card but that made it sadder in a way. The theme was 'I know I'm not the child you wanted' - from the perspective of the child speaking to the mother. It was quite moving and helped me to realise that DS1 does not have ASD on purpose to annoy me!

I know where you are now and it's a scary place to be. It's a kind of shock - even though I'm sure you knew already in your heart. I had this with dd back in January when her cerebral palsy was re-diagnosed to a much more significant form that would give a different future than we had been led to believe. I just felt slapped and it took me a long time to pick myself up. It's ok to swing from being really cross to loving them furiously and it's ok to want to close your eyes and make it all go away. You can accept the diagnosis for what it is but still wish your ds's life was easier without feeling any guilt.

Dla forms are awful - we found it a real point of despair as you have to focus on the worst case scenario - do it in little chunks and make dp do some too when he's back. I found I was doing it all myself and getting really upset so I ended up crying and after that dh and I worked on a paragraph a night together and we whizzed through it. It is worth it though - did you get the form through the post or on-line? the good thing is that if you get it sent to you they back-date payments from the date stamped on the form which can be quite a pleasant surprise in your bank account!

I did find it really hard for some time and ended up getting quite depressed - the doctor actually said it was a form of post-traumatic stress disorder and that I was still 'in shock'. I've been taking anti-depressants for a few weeks and I'm getting there (not suggesting you are depressed but just something to look out for - it's easy to get bogged down and not look after yourself).

I've also been having some counselling - I'm inmcredibly lucky as I have found a charity locally that organises days out for children with SN but also has a counselling service and the counsellor used to be a SN teacher so really understands - and it only costs £1 an hour! I think it would be quite reasonable to ask your GP to refer you for counselling. It's great being able to have a good moan to someone who isn't going to say 'but it could be worse' 'yes, but isn't she pretty?' type comments!

Thinking of you and I know things will get easier for you - you sound like a lovely mum to your ds.

The DLA thing is terribly stressful; we are just going through the same and it brings up all sorts of painful thoughts. To do it correctly you have to spell out to yourself what the very worst bits are like, of course it hurts! I can cope reasonably well with having to get up in the middle of the night to comfort dd and help her go to sleep, or with putting her knickers on when she can't bend her knees- it's having to spell out on a piece of paper that other Mums of 11-year-olds don't have to do this that really brings it home.
But the money is needed to make her life more independent, to take away some of the disabling aspects: I am not going to stop any pain to me getting her what she needs.
And remember- once it's done we can go back to focusing on the big picture!

thank you all feeling so much better while filling out form he was on floor smiling up at me and im there writing on seperate bits of paper how difficult it is for me

but as he was sitting ther counting twenty twenty 1 twenty twenty 2 it just made me smile and think he may not communicate like others but his also doing alot that they are yet to do so proud emotion

its just so hard i really wanted to get point across to DLA so havent filled in all book waiting for friend to do that sat

but have written on seperate pieces of a4 our life in each section how hard compared to other children his age it can be

the lack of awareness his melt downs in public the dangers of hi running in road wrote the incident outside his pre school that vowed me from then on to only get there as doors are opening

as one day we were there and he wanted to play with other children who were outside the door thought why not im here

gave instructions stay ther ebe careful dont run off roads dangerous ok he says

next thing his off running opening in railings he runs through now near road i know if i run after him he'll think its a game im shouting stop his laighing im walking at fast pace car is coming his b the road car is near him my heart is pounding his finding the whole thing hilarious juts got to him 1 sec later he would of been under car

iwas in tears embarrassed as all othe rchildren were able to stop when parents trold them and never ventured off when told and here he was nearly killing himself i felt sick all day was sick when i got home

it was so close ebevn now makes me feel so ill how close that was

now i get to pre school as doors are openeing or he'll have a melt down if i say no to letting him play outside the doors

i know he is unable to follow these things i ask him he just doesnt understand

i have written loads of things so hoping my point gets across and we can get it as there is some courses on communication and help and really would like to get the ball rolling aswere still waiting for speech therapy he was diagnosed 4 weeks ago has had speech delay since he was 2 and we still are not having any help

sorry needed to rant there feel better now

now i can look positively

it is amazing how much of a blind eye you can turn to how much there needs are different

but you know ive decided yes this has opened my eyes i may have needed this so i can be more aware of where he needs the help instead of being in denial now i can be more positive and get the help and help him myself as now i know

so i will use this positively instaed of denying myself and himself of the help required he can only benefit from all of this and in some ways me too

thank you to all of you

i look into the face of my child while he is sleeping

silent tears fall down my face

things are so different to what i expected them to be

but ive realised this makes no difference to me

he was given to me to be loved for the special boy he is

he has opened my eyes to how different his world will be

but we will tackle this we will help him we are a loving family

so dont feel sorry for me or him for we know nothing but love

and as for his needs we'll tackle them even though we know it'll be tough

i have more than anyone else for i see the world two ways

and as i stroke his face and whisper to him i love him

i mean this for the rest of my days

a poem i wrote for my son

mummy are you embarrassed when you look at me do you wish i was different

do you wish i could do things and know things that others could

do you get angry at me because you feel i should

because i see the world diffently and i am happy

i just want people to understand and except me

for i am not like you wanted and im not what you thoguht you'd get

but i have so much to learn and im not done learning yet

when you look at me mummy i see you love me but i see sadness in your eyes

when your in bed at night i can hear your cries

but mummy take my hand and we'll get through this together

as you have much to learn from me as i have from you

but i know when i achieve my goals i see your so proud when i say i love you i see it in your eyes

so day by day we'll learn together and for me dont sympaphise

see me for who iam, what i can do, and what i can be

and mummy that all i ask from you for me

one i wrote from my son to me

thank you sometimes i find such relief in just writing feels nice to share it

i like the im not done learning yet part as i know thats true we still have much more room to improve and learn that is what keeps me going

It's a dark time when you first have to acknowledge your kid needs help - I am a little over a year down that road. As Cyber says, you cope by looking at your child as an individual rather than comparing to others. I haven't been as successful as Cyber at not comparing though - occasionally it does smack me on the arse. Have hope. A lot can change in a year, particularly at this age.

yes i was fine until needing to fill them bloody forms out then i guess my brave face dropped

i as then actually having to face facts i feel bit better now ive typed on here had a cry i can start again just needed to release the my god it is true feeling rather than his ok maybe they have made a mistake

i now see his real needs so it cant be a bad thing i know where i can start helping him now instead of it'll be ok

just feels good to get it off my chest i can be free of my thoughts and allow the positive ones back and start again

its only been a month so i guess i have been in denial but now im not my child is different my child is amazing my child has atough time ahead

but i'll be there every god damn step of the way fighting his corner to get him the best care he needs to be able to function better in this world

what a lovely set of poems Bubbla - if it's any help, it does get easier (I am 2 years on from diagnosis). Plus, I know for sure that I could not love him any more more if he were "normal" - in fact I think my love for him is stronger BECAUSE he is more vulnerable. Some days, I feel like a tigress protecting her wounded cub from the outside world! And I also think of all the nasty, so-called normal child qualities he will never have. He will never be a bully, he will never be spiteful. He will never put someone down for their race, or gender or religion. All he really wants to do is bounce, get cuddles and be happy! And, by the way, they told me he'd never do much but I'm now teaching him to read!! Big hugs to you and your DS!

oh well done to your ds ancient that is fantastic

they tell you what they cant do its amazing what love can allow them to achieve the time the effort the caring thats what helps

maybe if they pulled there finger out and didnt leave lots of us without the help all our dc could achieve so much more

we spend half the time chasing what they should rightfully be getting

but whatever my ds achieves i will be proud as we can only do the best we can do and that is what counts

maybe its because we can see the real them and not just the diagnosis we give them the chance

i love stories like that so much hope can be given to others

I feel at times as if I keep 'boasting' about DS1 on this site. I don't have anyone else to share the little moments with (except DH).*

DS1 has a SN Nanny for a few hours each day. The park she takes him to has a lot of exits that he can nip out of so she has taught him the meaning of 'Stay in the Park'. The other day, she lost sight of him and panicked. She ran to the nearest gate and then DS1 popped out from behind a bush shouting 'Stay in the Park!' at her and laughing with excitement. Last year, he would barely have acknowledged someone's existence and he couldn't speak at all.

*This might change as I have finally met the mother of the other ASD boy at DS1's nursery. We live close to each other and we have a lot in common!

bubbla...just wanted to remind you that you are not alone. I am on a low too at the moment- could have written exactly the same 1st post that you did....

It does get easier- i have 2 already with ASD and the 3rd is being assessed for ASD- and i know from my experience that each time i felt this low it was at the point where i had what i had been saying all along - confirmed.

Please don't see this as a 'oh poor you with 3 ASD' as 99% of the time its actually easier having 3 peas in the same pod...and DH & I can see much ASD behaviours in ourselves- so when i post on here i am concious that cos i have 3 ASD that it sounds so tragic. It's not. (only 1% of the time )

my point is that this IS a difficult time for you. DLA forms are absolutely soul destroying as you have to be so negative- like you say, focusing on the things he cannot do- instead of the things he can do.

I am going to start my own thread (similar to yours!!!) as i don't want to steal your thread!!!! However , if you read it some of it may reflect how you are feeling.

use my thread we can all support each other you can steal my poems too if you want lol

i tend not to feel sorry for people as i know having children can be hard and challenging regardless

but i do undertsnad how much harder it must be in terms of how im feeling you have been through this time and time again so in that respect i will sympaphise as it is soul destroying but we still have great kids regardless there ours of course there great

anyone can write how there feeling on my thread we'll use it as a support thread a rant and boast thread

cyber that is great news bless him

i also find it very frustrating daughter in same boat as ur son, and u do think that sometimes why us?

however i have also thought to myself things could be a lot worse such as wired up to a life support machine or kidney/heart problems

all we can do is love them even more, its so hard at times, and if u get annoyed just try and take a few minutes out go get a drink/smoke or breath of air, try not to lose it, and trust me i have done on occasion although find it easier now.

use your friends knowledge to the best and to ur advantage

good luck

ps love the poems

xx

thanks 123 most of the time i am fine not frustrated with ds understood him better

its since i am having to really acknowledge how different he is its been last 2 days from lookingb at them forms

all of a sudden my patience has gone im stressed i cant handle his whining im shouting because its frustrating me that i cant work out what he wanted

he can use words but has days of them not meaning what he wants so i get it wrong he there no no whining crying im losing it

but now i have ranted and cried and told people how im feeling im suprisingly feeling like a weight has lifted

no one to talk to in rl so helps that i can come on here

i remember when first joining mumsnet i didnt know then ds was classed as SN he had speech delay so i thought i remember getting completely flamed for trying to give words of support

and now i realise how they must have been feeling and how stupid i probably sounded even though i was being nice i now have the hurt that evryone else had

but hey onwards and upwards from here ive hugged him kissed his snotty nose told him iloved him and he said I WUG YOU MAMA

music to my ears now thats my beautiful boy

thats so beautiful started me off again now im going to wallow into my bacon sarnie

thought id treat me and ds to bacon sarnie cheer us up his happy playing dora v tech

thanks bubbla- and how did you know that i love poems like yours!!!

how far into the DLA forms are you? we all use a great website to help us- it was recommennded to me by a mumsnetter years ago...but as you have your friend helping you may be ok- but shout if you need it.

that website helps explain the differences betwwen " can he feed himself" (and you automatically say YES" to
"he will only eat off 1 plate. No cutlery. Only food that has gone cold. carrots only cut in circles of same thickness and diameter. only maris piper/king edwards potatoes. battered fish fingers- no 'bits' as on breadcrumbs, "
then on to explain what would happen if you don't comply to all this....how long it takes to prepare- to supervise to motivate etc.
then how it is not typicall of a child that age. (the ds that this applies to 12 in oct- and the only one of those things listed that he can 'tolerate' being 'wrong' is the plate being different.

and thats because i have been deliberately fighting his compulsion by using different plates- as he goes away with the school in july for 3 nights and i have been working on the 'simpler' problems so that hopefully he does not draw attention to himself over something that maybe i could have prevented.