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I am banging my head up against the wall with DH and DS and I am seriously about to walk away

(36 Posts)
hereidrawtheline Thu 16-Jul-09 18:47:36

i dont know what I am about to walk away from.

But I feel an urge to flee just anywhere at all.

DS is so bloody autistic no offence meant but honestly I have no normality with him anymore at all. DH thinks from what he's read that DS cant be ASD because he is so chatty and sometimes has great days, mad, funny etc.

Of coruse we are still waiting for DX surprise surprise we still havent heard back from CAHMS who were supposed to see us "early July" but I will be astounded if anyone says he is not ASD as I can find no other plausible explanation for the living hell we are usually in.

How can I get DH and I on the same page, example when DS freaks out over the wrong cup I think just give him the right cup DH thinks we are reinforcing habits/behaviours. Roll that out a hundred times. I feel like we will never agree and never know what to do.

DH seems to still think ASD means more rainman type children and without transferring into his brain all I have absorbed here I just dont know what to do. I am at a loss.

HecatesTwopenceworth Thu 16-Jul-09 18:56:44

Both of mine are autistic. ds1 never shuts up! grin he is friendly - too friendly! really in your face! So many people think autistic always means non-verbal, non interactive!

re the behaviours. imo you both have a point.

You can't fight everything and you need to pick your battles. Some things just don't matter. The cup is one. It doesn't matter if he always has the same one!

but

you're not helping them by buying into all their obsessions. they need to learn to be flexible, to be able to adapt and to cope with change. - I can hear all the parents of autistic kids literally pissing themselves laughing! grin but it's true! This world is not structured, repetative, the same and they do need to learn to cope with that.

Would it be helpful for your dh to spend time with other families with autistic children? To see it in action as it were! grin If you live anywhere near me, I would be very happy to have you round for a cup of coffee and you can meet my kids.

hereidrawtheline Thu 16-Jul-09 19:05:52

hecate I think it would be helpful. whereabouts are you? We are N. Essex.

I know you are right that we both have a point but literally everything is an issue now. There is no peace, ever. I am struggling between feeling shameful feelings of dislike towards DS and defending him. I just dont know what to do and I want to stress I do NOT mean this literally but I just want to kill all the bloody NHS people who have stood by and done bugger all for the last year and never ever followed through on their end of the deal. They have helped ruin my family. I am furious right now. I have called and left polite messages, nothing. It is as if they never heard of us. I dont know what the point is anymore.

HecatesTwopenceworth Thu 16-Jul-09 19:08:44

ah. I'm in derbyshire dales! It's a good long drive but you're welcome! Perhaps you could have a few days holiday this way and combine?

How old is he?

Have you considered making a formal complaint?

hereidrawtheline Thu 16-Jul-09 19:12:33

DH is 35 grin

just kidding. he'll be 3 in 2 weeks.

I am going to make a formal complaint. I was holding off to ensure I did the right thing but I am fed up. They have totally fucked us around one time too many.

I dont know who to complain to. it isnt just CAHMS its the pead & hospital and everyone.

mysonben Thu 16-Jul-09 19:14:03

I'm sorry you are feeling so down. And i can agree with you yes it is double the trouble when dh acts like a jerk. Mine does too...and he still is in denial too and we fight over this all the time.

We have the same scenario in our house, with dh thinking i'm reinforcing a bad habit and that ds should be punished for creating merry hell over a plate , a cup, or a crease in the fabric of the sofa when we sit on it and he is playing with his cars next to us.

So where do we go from there? I have no idea!
I keep telling dh that ds doesn't mean to be a pain , that all these things may seem trivial to us but are so important to him , his routine , his rituals,...

Same palava with ds refusing to share anything, he will endavour to snatch whatever toy or object dd (14m)will be holding, and dh just shout at ds that he must share. Ds doesn't seem the concept of sharing! (Head against wall!)

Hecates- i would gladly take up the offer you made to HIDTL. wink

HecatesTwopenceworth Thu 16-Jul-09 19:17:37

ah, 3. Mine were diagnosed at 2.5 (ds1) and 3 (ds2) and it is a long process - understandably they take their time at that age.

You phone them up and ask for a copy of their complaints procedure. Be polite and friendly.

I did it. It lit a fire under them! grin I also told lea woman in a meeting about 1:1 hours that I didn't care about her need to fund other children (she was trying to tell me that my child wouldn't get all the hours he needed because other children needed funding. - legally they have to meet the need of each child, funding is not the parents problem!) and felt that the only option now was to take it to tribunal. I got my own way!

you need to be firm, pushy, polite but make them see that you are going to be trouble if they piss about!

Are you going to consider making the trip up here then?

HecatesTwopenceworth Thu 16-Jul-09 19:18:33

Door is open, MySon. Well, not literally. We're locked up like fort knox in this house, but you know what I mean! grin

silverfrog Thu 16-Jul-09 19:18:43

HIDTL,

I swear we must have been separated at birth, or something grin

seriously, I have struggled with all the things you describe.

dd1 is nearly 5, and dh has not had a problem with her asd diagnosis, but before she was dx'd, he spent a long time (not deliberately) undermining my worries. he was well meaning enough, but that isn't always the point.

even recently, when I have been really struggling, he hasn't been totally onside.

dd1 has started having sleep issues, and he was glibly telling me to cope (well, not quite, but that is what it felt like) until one night he was here when she was screaming, saw her fears and behaviour, and has since changed his mind on what I am coping with.

Have you tried asking your dh what his solution is?

when dd1 was screaming away, and dh was saying that he didn't think my methods would work (I didn't either, but I had to do somehting) I asked him what his solution was. His answr? He didn't have one. So I flipped and told him that in that case he could just leave me to it if he wanted (as in bugger of permanently) because I was just doign the best I can. I don't have the answers either, but I couldn't leave dd1 scared. And he began to see it in a different way.

It is really hard, but please try not to let it get bewteen you and your dh. Have you tried your dh's methods/suggestions (if eh has any)? really given them a good go? sometimes I am guilty of getting so into "I know what is best for dd1" mode that I dismiss dh's ideas, which is unfair. a surprising amount of them have worked (purely because he is on the outside a little more, and isn't living the autism battle all hours of the day)

hereidrawtheline Thu 16-Jul-09 19:25:30

silverfrog I am astonished you would not be too ashamed to publicly state we might have been seperated at birth after my constant unhappy ranting! tbh I dont know where to draw the line grin I am writing a long multi part piece about the myths of modern life and i realised I just sound like a horrible bitter crone, you on th eother hand are lovely

and sorry I am typing in a most uncomfortable way since laptop blew up so do not always ahave the will to correct.

hecate I dont actually know where you are - sorry for my ignorance can I claim my immigrant status as an excuse? We are going to BIBIC in somerset sometime likely in sept it hasnt been booked yet. Are you near there?

HecatesTwopenceworth Thu 16-Jul-09 19:27:27

grin no. our nearest city is Sheffield.

And if you don't know where that is, I shall be ashamed of you!! grin

mysonben Thu 16-Jul-09 19:33:08

HIDTL , do you have any support from friends or family? I suppose that can make a difference somewhere.

I don't sad , most relatives are in denial and keep saying "he'll grow out of it" and the two friends i had seem to be edging away from us bit by bit.
I just so hate all this.
I feel so bad and useless most of the time.
And you are right in thinking that a lot of people still think asd IS LIKE rainman!
They all make me feel like i'm a neurotic mum and no one apart from me wants to face up to ds 's problems and when i ask for a bit of help they all turn their back.

We are in Southampton so a bit far . Would really love meeting up another mum with some issues for a cuppa now and then.

hereidrawtheline Thu 16-Jul-09 19:33:52

no I do know that blush grin

I would love to take you up on your offer but we cant afford anything other than our BIBIC trip. If I get the job I am begging for and am suddenly rich that would change though!

silverfrog Thu 16-Jul-09 19:35:48

BIBIC are really lovely, and give you a really comprehensive report.

that helped dh open his eyes a bit to dd1's difficulties.

I remember her sitting at a desk and the therapist wanting dd1 to stack blocks. and she didn't. and dh asked why it was such a big skill, as she isn't very motor delayed really.

and the therapist told him it wasn't about the stacking as such, but about the fact that most non-ASD children would want to stack the blocks, especially if they were asked.

and it began to dawn on dh that dd1 was very different. that awakening has gone on a long time, and sometimes very slowly, but that is because he isn't here 24/7. and until recently he only saw dd1 at weekends. now that he is more involved on a nightly basis, and has to do stuff with her even when he is tired/grumpy etc, then he sees it a little differently.

hereidrawtheline Thu 16-Jul-09 19:36:16

msb we dont have any real support at all. and people always think it is just extreme terrible twos, or they agree but in a way that seems they dont like us or him.

hereidrawtheline Thu 16-Jul-09 19:39:35

sf I am hoping we will come away from BIBIC with something like that.

am on my hosp website and debating going straight to formal complaint or PALS first.

Phoenix4725 Thu 16-Jul-09 19:59:46

HIDTL

I went to Bibic and found it really usefull for idears and to get idea where ds is devlopment wise and even more so they gave me ways how to help ds with various problems also ot things that im still waitinf for the nhs ot to do a program

notice you said north ESSex hmm not by colchester any chance are you as there much use as choclate teapot

hereidrawtheline Thu 16-Jul-09 20:04:01

i am in colchester hosp

Phoenix4725 Thu 16-Jul-09 20:11:36

that says it all hmm are you seeing devlopmental paed at pct we see one aDr Robinson who hates handing out labels hmm come to that anything ot sucks to and salt and physio

hereidrawtheline Thu 16-Jul-09 20:12:36

i am seeing a dev pead but not one by that name. and cahms have really massively let us down.

lou031205 Thu 16-Jul-09 20:22:51

mysonben - I am near Soton, where are you?

HIDTL - Sorry things are so tough. I am sure master HIDTL is lovely. I would meet you if I wasn't down South smile

Phoenix4725 Thu 16-Jul-09 20:24:34

we not even seen cahms thing its as ds is only starting school this year were stuck with the GDD tag with asd traits and Sli .There is a couple of paeds that are good

best is to get on the phone and start bitching .Dh should meet my ds yes hes non verbal but hes smiley and friendly but when hes upset hes a mini demon

I to am complaning as we get minmal help lol we only see spealist hv at 6 monthly meetings she has to check who ds is mixes him with dd

reducedfatkettlechip Thu 16-Jul-09 20:37:43

Oh you poor thing. I wrote a similar post not long back, it can all be so frustrating and isolating to cope with. We're down in Cornwall - an hour and a half further than Somerset and you're very welcome here too!

hereidrawtheline Thu 16-Jul-09 20:39:55

you are all angels. wish I had some of you near me. I always feel it is either me being judged as a shit mother or DS being judged as an unpleasant person. Neither of which are true in reality.

mysonben Thu 16-Jul-09 20:43:37

lou031205, yes we are in so'ton in woolston. Are you far?

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