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I don't know how you manage

(26 Posts)
hildathebuilder Tue 12-Jul-11 15:54:27

I am getting very fed up with those 6 words.

My Ds has CP probably quite mild possibly mild to moderate, he has weekly physio, plus some other physio on top at the moment. We have cdc appointments, and some other appointments due to DS other health issues. I took a week off when he was in hospital but I had leave booked then anyway.

I work full time and went back full time when DS was 6 months corrected age. My husband works. We both have "professional" and well paid jobs. However we can both work flexibly and my company say just take the time off when you need it for an appointment, we know you'll get the work done when you need to. DS is in a nursery who are very good, and if and when he's ill my parents help. So far it works. It's hard and I wonder if its sustainable in the long term.

But how does anyone do it.

I know eveyone means well, and they mean those words as a compliment(well apart from my secretary who told me to stop work for my son's sake, but even she said that in a well meaning way).

I don't know whether I am just having a rant as I don't want to hear I have to do more than the average, or whether I am asking am I kidding myself to think I can carry on like this without cracking under the physical pressure. But whichever it is I know you will udnerstand.

1980Sport Tue 12-Jul-11 17:20:46

I was going start my own thread about what I'm about to write but I thought I'd respond to you instead smile

I have the opposite - most of my friends seem to think I have it easy!! My DS is 2.6 with severe GDD with mild hypotonia, not mobile, not self feeding, no communication, some difficult behaviours etc etc. Life is pretty hectic with appointments, statutory assessment, form filling (you know what I mean) I'm due to go back to a well paid job I love shortly after maternity leave with DS2 and we're really beginning to wonder if this is feasible esp after my FIL was very ill recently - PIL's are our main help!

I happened to mention this to a friend who has two DC, (2 & 4) both of whom are fairly high maintenance. I would need to have some sort of income and was talking about childminding - DH wasn't too keen as he thought it would be too tiring. Anyway my friend happened to meet DH and mentioned the childminding to him saying it would be a great idea. When he said he wasn't so sure she basically implied we had it easy because DS1 wasn't walking and we'd soon find out what hard work really was when DS2 hit the terrible twos!! She has also compared carrying her NT 2 yo (who can walk but likes to be carried) to me having to carry DS1! And that we're so lucky DS1 sleeps!

Another friend said how lucky we were to get the extra income from DLA and rarely asks how things are but I seem to be her first port of call for every trauma in her life however insignificant!

On one hand I'd hate everyone saying oh how do you manage, you're so brilliant, I could never cope but on the other I'm getting really fed up with my so called friends not realising how stressful life is at the moment!

I haven't been much help sorry sad

Claw3 Tue 12-Jul-11 17:29:59

Id like to have SOME friends to say such things to me!!

Its pretty difficult making friends when you have a child with SN's.

hildathebuilder Tue 12-Jul-11 17:41:33

OK, I will try to appreciate the sentiment and try not to get worked up with the words. I do know I am lucky and compared to many i do have it easy... I just still wish for that magic wand where I don't have to manage if that makes sense. And I don't want to be reminded of that everytime someone says something. But I am sure there is nothing which is the right thing to say smile apart from perhaps can I pour you a wine grin.

And I have good friends who are always offering to help even if they don't know what they can do (neither do I given they don't have the magic wand) Maybe they will be less so as DS gets older but for the moment they are there for us all and I am grateful for that. I didn't mean to come accross as if I wasn't but it still winds me up. A bit like oh aren't you lucky not to have got so big/fat/pregnant when DS was born early, and oh I wish i fit my clothes as quickly as you did, and all those other well meaning sentiments which are in fact just a reminder of what you have lost.

1980 if it helps I do manage, I don't get time for myself really, and I never get much sleep, but in many ways I can come to work for a rest. And when it doesn't work I do have a really very good relationship with my company who give me the flexibility I need. I just want not to need it.

justaboutWILLfinishherthesis Tue 12-Jul-11 17:56:28

Message withdrawn at poster's request.

Claw3 Tue 12-Jul-11 17:57:37

Sorry Hilda, i didnt mean to be flippant, there are no 'trumps' when it comes to problems or things that drive you crazy smile

I hadnt really noticed, that i didnt actually have any friends, until sos sen told me never to go to Tribunal alone and to take a friend along grin

justaboutWILLfinishherthesis Tue 12-Jul-11 17:59:08

Message withdrawn at poster's request.

Claw3 Tue 12-Jul-11 18:04:45

Aww thanks Justabout, im in the South unfortunately, but accept your unmumsnetty hug grin

To be honest, i find that i dont have much in common with parents of nt children and they say things which wind me up, a bit like what hilda is talking about!!

Probably more to do with me, than them as to why i dont have any friends smile

1980Sport Tue 12-Jul-11 18:34:29

Goodness - I didn't mean to sound unsympathetic or not understanding. I do get what you mean - I hate HAVING to manage too, I think we feel quite similarly about things in that respect! I will be opening the wine tonight, it's hholiday time here smile

coff33pot Tue 12-Jul-11 19:04:03

I have 3 DCs 2 NT one SN. the NT DCs cause as much havoc as my SN DC to he honest just on a different level! I run my own business with my DH, we chose this because of the added pressures of employers frowning upon hospital/medical appts or sick children. This way we work it amongst ourselves and can lock our own door if we need to without being frowned upon or worried we might lose our jobs. I do my own accounts (pulls hair out at deadlines lol) keep house and look after pets. Its a madhouse and we are not worth millions and just earn enough to pay the bills but we like it that way. No one can fire us grin I dont go out leisurewise because I cant....there is no time. But my business means I am meeting people and dealing with customers all the time so at the end of the day I dont want to go out and socialise as I have done it already. I have been told myself that perhaps I should stay at home for DS but if I did full time I would go bats and I am lucky that I have a DH to share the load and rota between us. I love him dearly as I do all my children but I also need that oomph and personal goal in life that gives me a purpose. Thats the way I am. And it does wind me up when people say how do you cope..................I tell them its because I am a mother and I just do. If my house is a mess I dont give a toss and I dont invite ppl round so I dont get so stressed out that I have to use my spare energy cleaning up instead of quality time with the children. I used to care a lot and get well anxious when someone knocked the door but now I just dont answer it! Dont get me wrong the pressure and the hours are unbelievable sometimes but I like living in a rat race. I think all mums are superhuman and will always go that extra mile for our children. We get that surge of protection and ..........yep we just plain get on with it grin

LeninGrad Tue 12-Jul-11 19:09:25

Message withdrawn at poster's request.

Pagwatch Tue 12-Jul-11 19:12:40

It drives me batty too.

I think it is an easy thing to say tbh. But like the "special mums" shite it is a distancing mechanism.
Average people don't want to contemplate that we are exactly like them - that there is no difference between us and our children could just as easily be theirs.
So "I don't know how you cope" and "I couldn't do what you do" are sub conscious ways of reassuring themselves that this couldn't happen to them.

Don't get me wrong - I know there is no intent. It is just an attempt to say something nice. But the unspoken ' I would rather it was you than me' is what bugs you I think. It does me.

I tend to smile. If pushed I say " what would you do then, if he was yours ?" and leave it

silverfrog Tue 12-Jul-11 19:15:05

agree with pagwatch.

I have, when pushed to an extremem by a friend who did not take my fixed grin and "oh, I am not special, believe me" hints, said "well, I didnt exactly have a choice, did I? there is no option but to cope" which led to a frosty silence...

people do mean well, but it does grate.

LeninGrad Tue 12-Jul-11 19:19:33

Message withdrawn at poster's request.

zzzzz Tue 12-Jul-11 19:59:15

The truth is they don't know how you manage, because they just don't get that you have to as there is no real opt out with kids, or that your child might actually be lovely as well as hard work, or that sometimes you look at their families and think "Thank God I don't have to deal with that", even if theirs are nice and nt average.

Part of the problem for me is the isolation....nt mums feel they can't complain about their lives in front of me because mine is just SO awful in their eyes. I LOVE my life. I find it fulfilling and I am happy with the children I was lucky enough to have. Yes there are days when I long for a rest [OK most days], but my 2 crazy sn kids and my 3 equally crazy nt ones are my masterpieces. I work for money, but I eat sleep and breath my children.

I don't manage or cope, I frankly the pity is wasted on me.

1980Sport Tue 12-Jul-11 20:08:11

That's really well said zzzzz - that's going to be my mantra from now on - I'm living! Not managing or coping! Because you're right - I love my life too - I have two gorgeous boys, a DH I adore and lots of things to be very positive about smile

Thanks for making me feel better, I've been really fed up the last few days!

Pagwatch Tue 12-Jul-11 20:14:22

It's not one thing nor the other. I have a fucking fantastic life. And I love my boy and all my dcs with every part of me.
But the things pagboy struggles with are hard. His disability is sad and it is hard. It just does not define my life.
Some days I do just manage. Some days I don't stop smiling and laughing.
Like most people I guess <<shrugs>>

BialystockandBloom Tue 12-Jul-11 20:26:44

I would find it hard not be pretty bloody blunt, actually. In anticipation of being asked this one day, I have already been preparing my response of "what the f* else am I supposed to do then?".

But perhaps because I am so obviously stressed not managing particularly brilliantly no-one has yet given me this dubious compliment grin

justa you are so right.

claw where are you - are you in London?

Galena Tue 12-Jul-11 21:10:44

Hilda, I have a feeling we're pretty similar... DD was born at 27 weeks and has just been diagnosed with CP (probably mild). How old is your DS? DD is 2.3.

I hate 'You must be so strong to cope' No, there's just no other possibility. I couldn't do anything else but cope. And I look at other people who have it worse than me and think 'They are so much stronger than me' but then kick myself, because there's nothing else THEY could do either!

hazeyjane Tue 12-Jul-11 21:23:39

It is strange the way it grates, isn't it. A friend of ours said it to me the other day, and I just burst out laughing, and said, 'well actually, I really haven't been coping, but the anti depressants are helping'.

Pagwatch is right, people don't want to believe that they could be in the same situation. I also heard it a lot (along with, 'you areso brave'<arm squeeze>) when I was ill and having chemotharapy.

It scares and embarrasses people when you admit that, actually sometimes you aren't coping especially when you burst tears at toddler groupsblush.

Claw3 Wed 13-Jul-11 08:35:16

Baily, im in Kent.

I am finding that the friends i had pre-ds are becoming increasing distance, not entirely their fault, mine too. Its finding the time, the distance we now live apart, also the silly comments such as 'are you sure he has autism, he looks fine to me" etc, they just dont get it, i find myself not bothering or making an effort with them.

Ds hasnt made any friends in school, so the 'normal' getting to know other parents i had with my other children is just not there.

I did recently swap numbers with a lady from ds's ASD food group, she has two children with ASD and they are coming round today after school. She totally 'gets it' and although i dont want to spend all my time talking about ASD or special needs or ds, when he does something or behaves in a strange way, its nice not to have to try explaining things and getting the silly comments iyswim.

cory Wed 13-Jul-11 09:02:14

The first time anyone said that to me I nearly burst into tears with gratitude and wrapped myself round their neck. blush

But then my dcs do have an invisible disability and the general tendency had been to hint that they weren't really disabled at all, that I just wanted them to be disabled. Until you have been suspected of Munchausen by more than 3 people in authority over your child, you won't know how beautiful those words can sound.

Funnily enough, what triggered that first comment was dh explaining to the school secretary how much money we were spending every week on taxi journeys and chiro. The fact that the child was in constant pain and unable to walk hadn't really registered as a problem, but £60/week- now that was a concept they could understand!

I can see that "how do you cope" is a distancing mechanism, but it is better than telling a child to her face that she is a fraud. Which has happened to dd more than once.

hildathebuilder Wed 13-Jul-11 16:39:26

Sorry it has taken me so long to check back in. I was giving a training session all morning.

I knew that people here would understand, as well as say things which help me understand why it grates so much. I feel so much better having read through it all. And I am reassured that it drives some of you batty too. It's just such a backhanded compliemnt, even if people do mean well.

My DS is 16 months (13 and a bit corrected - he was a 29 weeker so "should" have been safer than many). He's delightful and bubbly, and I am sure will be fine one way or another in any way that counts. In fact he is fine in the only way that counts. He's my DS and I love him.

And I also look at people who have it worse than me, and have the same thoughts that they must be stronger than me but again realise they had no more choice than I did.

schobe Wed 13-Jul-11 17:02:33

I think in the early days everything bloody grates!

At the moment, I'm wishing people would stop telling me what a fantastic job I am doing. I'm not, I actually need a kick up the bum I think. DS needs more from me. I'm failing him daily. I'm only human and a pretty crap one at the moment.

Also I struggle with hearing about how well DS is doing and how much progress he's making. To be frank he's not - any progress is painfully slow and in tiny tiny steps. No, mother, you can't see a difference in one day.

Sorry for rant, but I think basically I'd not be happy with anything anybody says. It's always wrong tbh.

God sorry, what a completely depressing post! I'm not in a fab place atm.

DeWe Wed 13-Jul-11 17:16:04

I think anything you hear regularly starts to grate. Fine for one person to recognise it, but when that seems to be how people see it. It also (to me slightly implies) that you're rising above the wave rather than just keeping your head above the water.

For me the phrase is "Doesn't she cope well." Which is usually said in an admiring tone and is entirely meant as a compliment. Sometimes I feel it's an excuse for not offering/seeing extra help that's needed. Sometimes I want to point out what actually involves her "coping" behind the scenes. Usually I just say "thank you" but that's not really what I feel.
The other one is "she can do anything" to which I often point out that concert pianist is pretty unlikely when you're missing a hand. Again, it's meant nicely, but it fails to recognise the sad fact that actually she does have extra needs and yes, I may not like it, but there are frustrations that come with it, and I cannot do anything about it.

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