does the enormity of it all just hit you sometimes

[Fio2]

it happened on monday. i had met a mum from my dd's school, we chatting along fine and we do really get on and I just started to feel sick, as though i was going to have a panic attack or faint. I felt sick to stomach and felt really weird. It was the enormity of it all just hit me in that split second. I felt panicky for the rest of the day and still feel a little weird now.

Most the time i just feel okay and muddle along, but then other days i feel as though i cant take any more knocks iykwim

this is most probably a complete ramble. i know you all think i am a manic depressive anyhow but its as though I have nothing to moan about and my mind starts working overtime. The pressure of being in charge of all those decisions and being the interpreter and guardian of such a complex child that no-one else has a clue, except a few like minded, similar positioned people

is it just me ?

[TheRealMrsF]

no...you are NOT alone!

I know exactly what you mean...i have been feeling overwhelmed by it all for a few weeks now....

i crave being 'at ease' and 'relaxed'.....i'd love to just 'be ME'.... i can't even describe what exactly i feel....just there is no part of my life that 'just happens' or 'takes care of itself'...i have to be involved ALL the time.

I suppose my current 'gripe' is how hard it is to 'convince' anyone of what caring for my boys involves...all i get is :

"you are coping so well...there's nothing we can offer you that you don't alraedy know/say or do" (well...at what expense....yes....i do everything i can to help my lads...but i am so exhausted....and it's like a treadmill....but I DON'T WANT TO GET OFF...cos...if i stop ...THEY will suffer....)

or

"they look so normal"

Feel like shouting....BUT 2 of them are AUTISTIC!!!!(from the rooftops preferably)

Social services finished me off this week when they imformed me that we don't meet their criteria...as that dept only deal with children who are SEVERLEY DISABLED....and that mine are ONLY IMPAIRED!!!!!

If i didn't have DLA forms flying round in my head i would be writing a letter to SS challenging their 'assumption' that my boys are 'only'IMPAIRED (YUCK!!!)...how do they define SEVERE DISABILITY.

And would they prefer that i give up trying so that they then HAVE to intervene.?

[Saker]

No I know exactly what you mean. Sometimes it just strikes me and I can't believe it's happened to me and that I really have a child with special needs who is going to go to a specialised unit (well if he gets a place! ) Before you have children you discuss what you would do if you had a disabled child but you don't really believe you will. And yet at the same time I can't remember a time when I thought things would be any different. Sorry now I'm rambling, but I do understand what you mean. I think most of the time you have to focus on the little things or you couldn't cope, but occasionally you take a wider view by mistake .

[Dingle]

I think I just buckle under in a different way. I suppose I have to hold a lot of my feelings/worries in. I can't "off load" them on my mum and dad, they have too many health issues of their own. I have friends, but only really to chat to IYSWIM, no one to really open up to.

DH is fantastic, but I really don't think he can appreciate what it is like trying to deal with all the cr@p day after day.

The point about being alone in the decision making is just so scary! I just can't believe the lack of professional guidance out there.

[jenk1]

its horrible isnt it?, i had those feelings yesterday-i just hit rock bottom but then the only thing u can do is go up, sometimes u have to hit rock bottom and then a situation will get a bit better, i said to my mum yesterday "i cant cope any more" she said "oh u r coping" then changed the subject, its the little things that get to me like a shopping trip,going to the inlaws and seeing the other smug parents of their NT children watching mine,not being able to go anywhere on the spur of the moment,having to explain "he doesnt understand he,s autistic". then u get "oh r u sure he looks normal" that really really annoys me when they say that even my mum said yesterday she,s not sure if he is autistic,oh great-if your own mother thinks that how does that make u feel? sometimes i think im going mad and its all a bad dream that i will wake up from..sorry just rambling on

[coppertop]

It's the little things that seem to get to me. Last week I was at a toddler group with ds2 when one of the helpers said "He talks well for a 2yr-old, doesn't he?" I just didn't have the energy to explain that despite his recent language explosion his comprehension is still a long way behind. Another occasion was when I had to take ds1 with me for ds2's appointment and the Paed asked if they ever played together. I looked up and there they were, each at opposite ends of the room, blissfully unaware that there was anyone else in the room.......

While waiting outside the school last month I heard one of the other parents complaining about how many presents she'd had to buy this year because her ds had been invited to so many parties and she didn't want to say no to him. Poor ds1 hasn't brought home a single invitation all year, and it just hit me how different he is to other children of his age. I must admit that I went home and had a good cry.

[mamadadawahwah]

Just posted a thread on my ds's diagnosis today and then read this one. I am trying to be stoic about it all but am still in shock as its only an hour since diagnosis. My son is blissfully unaware that I am bawling at the computer thinking of a future for him in a special needs class or, when I am dead and gone, in a care home.

I have resolved this very moment to never give a shit what other people think of my son though. He is mine and I know what is best for him. I have to say that I listened to a lot of people say how wonderful he was, prior to this diagnosis, and that he would be all right and that there was nothing wrong with him, he will grow out of it, etc etc. You have heard all this before I know.

My question is what do you moms with ASD kids say to others, if anything, to someone about your child's "condition". I dont want all and sundry knowing my child's medical history.?

[Caroline5]

fio, you aren't alone - I've been feeling like this sometimes too. Sorry you've been feeling low. dd2 is becoming a little more 'challenging' now, mainly screaming a lot when out and biting. Most people just look on with pity which isn't what you need. Also as I'm now on my own (sound of violins playing mournfully!) I just imagine trying to battle through for endless years with my dds. The thought of all the decisions rests heavy on my shoulders (and all those teenage years - aagh!)

I agree with Saker, it's easiest to cope one day at a time and avoid taking a longer view!

[Blu]

oh, god, fio, it hits me sometimes and DS's problems are not even serious.

If i ever find myself talking about his big surgery and times i feel he will be terribly vulnerable, I sometimes start to cry, completely without warning. I sometimes start to explain, completely calmly, to someone who has asked, how we made the decision we had to make over whether to amputate DS;s leg or not, and I'm perfectly rational and then WHAM.

It sounds as if it is the emotional impact overwhelms you from time to time - and of course it does, you're her Mum, you love her, and it IS a huge responsibility that you eal with every single day. it really is.

XXXXXX

[SoBlue]

I agree its all a battle with the outside world and with your own family sometimes when they don't bother to understand your childs problems. I had a strange conversation today when my ds teacher/helper spoke to me about feeling inadequate, as she is being shadowed by his new trained autistic sn teacher. I had to give her a pep talk to comfort her as she felt she might be doing everything wrong. It was a very surreal conversation, iv felt that way many times myself.

[geekgrrl]

Fio, I do know exactly what you mean - have had a few of those moments recently as dd2 will be starting school in September. Last week I was sitting here reading a leaflet on inclusion for kids with DS and just suddenly burst into tears - it just all seems so unfair sometimes that I should have to read up on all sorts of stuff and that it's not all just normal and straightforward...
Same again yesterday afternoon when I drove home with dd after picking her up from her 'settling in session' at primary school - the teacher only had time to tell me that dd had had a nice afternoon and on the way back I just started crying again - dd was sitting silently in the back of the car and I had no idea of what she'd been up to and no way of finding out as she doesn't talk. Her older sister would have been bubbling over with excitement and telling me every little detail.

It just really hits you sometimes. That's why meeting the Wiggles today was such a big thing not just for the kids but also for me - it was nice to get a really big bonus for a change.

[heartinthecountry]

Absolutely Fio.

Mostly when I look into the future. Scares me stupid. Try not to go there.

Sometimes it takes me completely unawares - like yesterday. I was parking in a disabled bay and I just suddenly became overwhelmed with this thought of "how did it happen that it is normal for me to do this?"

[Dingle]

Oh dear, hugs to anyone who needs them!! I told myself today that the battles I am fighting today will only make our lives easier in the future..

....who am I trying to kid.. you get over one battle and another jumps out and slaps you around the face.

Still, I do have battles to fight...

commence battle page 13 DLA form!

Chins up my lovelies, at least we have each other for support. It softens the blow knowing that however down you are feeling, whatever "silly" little goal we meet, there is always someone here knowing exactly how you are feeling.

xxx

[Jimjams]

Fio I find ds1's schoo in particular hits me with it, because so many of the children are sooo disabled. it sort of emphasises where we are. I have a feeling you feel the same and Davros too.

(PS ds1's annual review started with the head saying "well he's a complex little chap isn't he"- complex is the everyone's favourite word for him )

[Thomcat]

The enormotity of it all has hit me really for the first time recently. Since becoming pregnant really. You know me, Miss rose colured glasses and all that, and I'm happy with being me and wearing those glasses. B ut I'm not stupid and I know what's behiond them and I've had to think about it a bit recently and yes, it upset me, it worried me and it scared me. That's why thinking about the future sucks.

But since the testing / thinking about the future I've re-looked at a few things and yeah in short, I've been hit in the face with a few things of recent, but hey ho, like I always say there are a lot of people a lot worse off than me and nothing has new has happened and I actually feel more lucky these days to have Lottie in my life. So all in all I'm still happy, just a bit changed.

[Fio2]

crikey. You know it really helps to know i am not alone, even though i feel sad all of you have moments like this aswell. Tbh i thought i was going a little insane on monday and goodness knows what my friend thought as i dont know her that well Think it was off loading so much (she did too) and then i realised what the hell my life actually was, its easy to bury your head in the sand and lets face it no-one really wants to listen or know how hard things are-except for people in the same boat and a few people who dont judge.

Jimjams the school is hard. me and my friend were talking about this too. the chaos of it all aswell, makes you feel like cr@p dd's anual review started off very much the same, mr and mrs complex eh?!

I suppose I should think myself lucky I have friends of SN children and some lovely friends of NT children who do understand and who dont cringe when dd is out with us. i have to add that as i have made friends with people of NT kids (off mumsnet, all those hairy trucking internet weirdos) who DO understand dd and know where i am coming from.

I dont know about dd being complex, i think i am

[Jimjams]

Hee hee at the cringing fio. I met Ghosty for the first time this week and ds1 adored her- spent most of the time sat on her lap, and I was trying to explain that some people can't handle him - and I don't think she could understand why (because they hit it off!).

Then I WISHED she'd been around yesterday as a friend's sister has been looking for extra cash. I told my friend I was looking for some extra hours with ds1 (direct payments money_- just general helping around the house stuff- feeding the baby, playing with ds2 etc. She came round yesterday to meet us (haven't seen her since ds1 was a baby), and he did his usual stuff, gave her a bit of a sniff, shouted a few things (not sure what) and she looked soooooooo uncomfortable. Anyway she rang later and made an excuse about not being able to do the job because..... blah, blah, blah" when clearly she couldn't actually handle being in the same building as ds1. normally I would have been really muttery about it but I actually kpet thinking- agh wish ghosty was here because then she'd see what I mean! Unfortnately I think that reaction is more common than Ghosty's.

[KarenThirl]

It sometimes hits me in the school playground. J's at mainstream school and often the sight of all those 'normal' children is too much to bear. A couple of weeks ago we had a beautiful sunny weekend - probably the first of the year so far - and on the Monday morning the yard was full of happy families, a bit of suntan, little girls with skipping ropes etc, parents chatting about what a lovely time they'd had over the weekend, where they'd been etc ... And we'd been locked indoors because of J's hayfever and he'd blown his stack every half hour for one reason or another - we wouldn't have been able to do anything nice either way. I just couldn't handle it, cracked up and started crying - it was all too much to bear.

I now work to the principle of 'better out than in' and have a good cry whenever the need arises. If I don't it bottles up and I go loopy every few weeks. I think of it as a cheap form of therapy.

I KNOW we're all doing a great job but often it doesn't feel like it, and when I'm down I could kick anyone who tells me how well I'm coping (and really HARD too). There's a lot of difference between 'not coping' and 'chucking yourself under a bus', but we've got to keep going on because our kids need us. Not doing it just isn't an option.

Keep going girls. When you get down the only way is up.

[ghosty]

Jimjams .... am and for you about that girl ... grrrr
I just don't get it! Am I really that unusual? I can see how hard it is for you ... I really can, I felt shattered after 24 hours in your house so all the way home I kept thinking "How does she do it?" but I still don't understand why people would find your DS1 so awful .... IMHO he was the most magical child I have ever met ... truly, I mean that .... I haven't stopped thinking about him since my stay with you. How can people NOT see that in him?
Sorry for hijacking this thread ...

[misdee]

not about my kids. but each day it hits me. hard. i wake up and for a few moments everything is normal. then i really wake up and see an empty space beside me, dh isnt there and he wont be for a while, if ever. each day i make phonecalls for dh, to dh, or for help for us here. each day i try to get to the hospital. each day i end up crying.


god i'm a miserable moo arent i.

you know i love you fio xx you are my rock.

[ghosty]

I wish I had been there and seen that girl's reaction .... sigh ....

[ghosty]

Misdee ....

[misdee]

ooo i missed the bit about your and jj meeting. is JJ as lovely as she seems

(not gonna make people blub tonight, incuding myself!)

[Jimjams]

Misdee I don't know how you keep going - I do think about you a lot- as I said in the other thread.

Ghsoty- funny you used the words magical- as our homeopath said the same last week- followed by magnetic. I think people either completey fall for him, or they just can't cope with the complete other planetness of him

[Jimjams]

I love fio too misdee