Not coping with dd1 being disabled

[heartinthecountry]

Really hoping that someone else out there understands this or I am going to sound like a real bitch. Have hesitated about posting but I am really not coping at the moment. Sorry this might be long.

Ever since dd2 was born (nearly a year ago) I have been really struggling with dd1 in lots of ways. Partly due to her behaviour and partly due to my own feelings.

Basically I have begun to really resent her disability. I never used to feel like that. I used to feel that it was who she was and if she was different then so what? Now I hate the fact that she can't walk unassisted and I have to physically help her with everything. I hate the fact that I can't really play with her because her concentration span is about 2 seconds and she just doesn't have the play skills. I hate the fact that she can't really occupy herself at all. I hate the fact that every time I ask her a question I have to ask it about 5 times to ensure that the yes or no answer she has given me is the one she actually means because often she says yes but means no or visa versa. I hate the fact I have to ask her to do everything 10 times and even then she often won't do it (things she is totally capable of but chooses not to do). I hate it that she has started shrieking at the top of her voice whenever she doesn't get her own way/is bored. Most of all I hate the fact that she spends her whole time hitting or pushing over her little sister.

Basically I have become really resentful of the fact that she is disabled and that I am never going to have a 'normal' family life.

I think part of the problem with having dd2 has been that I have realised for the first time just how different dd1 is and how much I have missed out on. dd2 is just easy and everything about dd1 at the moment is just hard.

I don't feel I can talk to anyone about it either. Everyone is always telling me how lovely dd1 is and how well she is doing. I feel like they don't hear me when I say that I am struggling.

Sorry this is long and I don't feel I have really explained myself properly. I love dd1 but I just don't want to be with her at the moment. Am I awful? I feel like I have let her down very badly by not being a more understanding mum.

[maddiemostmerry]

Oh HITC, I know exactly how you feel, the repeating everything, the knowing they can do something but don't, the shrieking.

My ds is great as well, but sometimes the complexity of it all really hits home.

Everyone also tells me how great ds is doing which he is, but again it doesn't take away the sheer grind of it all.

I'm not sure of what I can offer in way of advice but believe me you are not alone.

I try to set myself small treats(choc etc) for getting through the day

[PersonalClown]

I could have wrote most of your post about ds. I figure it's normal. We are not superhuman although some people expect us to be. We all have our limits.
Have a ((hug)) from me.

[2shoes]

reading your post said one thing VERY clearly to me. it is your dd's disability you hate . not your dd.
I hate all those things. i hate the fact that dd has cp. but i love dd.
I think all parents of a disabled child feels the same at some time. you don't say how ols your dd is. but i think as the years go by most(not all) parents learn to accept it. but it takes time.
sending you loads of love and my email
[email protected] if you want to just unload or if you want to join TTR(sorry if you already have can never rember who has and hasn't)

[2shoes]

(pesonalclown have you joined TTR? email me if you want to)

[heartinthecountry]

Thank you all of you. Sitting here with tears rolling down my cheeks - I think sheer relief that others understand.

dd1 is nearly 5 2shoes. I thought I had 'dealt' with my issues about her disability years ago but seems i hadn't really.

Not sure how I get beyond this though. I can't live the rest of my life feeling this way about dd1. Its not fair to any of us.

[heartinthecountry]

What is TTR 2shoes? Sorry, I haven't been around on mumsnet so much in the past year so this has passed me by.

[ellis65]

I used to be like that with my DD, everyone tells you they don't know how you cope, but you cope because YOU are HER MUM and you love her, yes, its hard, i know, i have a SN daughter, and she is so different from everyone else, just remember you were chosen to have her because you are special too. I don;t have a diagnosis for my daughter, it doesn't really matter now, she is who she is and loved very much for being different. Speak to your social worker, if you have one, she could be a good listening ear, mine certainly is!!

[heartinthecountry]

Hmmm, don't think I am special ellis65 - certainly don't feel it and definitely feel recently that dd1 could have done a lot better than me. She needs someone who is patient with her not someone who gets cross and shouts with frustration. I am really trying to cope day to day but lately it gets on top of me more often than not.

I don't have a social worker or an hv.

[ellis65]

Dont want to be nosey, but do you have a husband/partner, who could help you, my mum and my husband help me out lots, my dd is now 15 years old, and i must admit the years have flown by, yes, i've had my moments when i didn;t want her, but please be reassured that you are a good mum, these feelings are totally normal, and understandable, but please don't compare your daughters' abilities, they are individuals with their own needs. BIG HUG to you.

[heartinthecountry]

dh is generally very good but has been working away from home during the week for the past 3 months (stil one month to go). I know this has made things harder but I wasn't really coping before that.

I have a respite carer, I have a childminder (I work 2 days a week) so I do get a break. But it doesn't seem quite enough at the moment.

[ellis65]

I agree, respite, childminding is never enough, but your right, with Dh working away, things will seem so much worse!!

[ellis65]

Can i ask a stupid question, does your daughter go to school?

[Blu]

HITC - I have no experience, but I can hear what you are saying, and completely sympathise.

All I know is is that a good friend once 'confided' (because it seemed to her such a taboo-busting thing to say), that she was having to bite back pangs of rage at her DD! while trying to spend time with DD2 as a baby 'I felt she had had her time, I was furious with her because she wouldn't let me have that one-to-one with DD2'. I guess you mus be feeling this, along with lots of other frustations and long-felt but little acknowledged feelings.

And i guess amidst motherjood, coping and having a working-away DH, there has been NO time at all which is just for you. Or attention to your needs as a person.

Unfortunately, Mums of SN kids don't seem to come with a special upgrade package which gives you superhuman strength (though god knows, you need and deserve it), so don't feel guilty if on standard-issue resources, you run out of energy and goodwill.

Most of us would.

But, I don't know what to suggest. Except shed the pressure of feeling that you are awful or have let anyone down.

[gess]

HITC- will reply later, have to dash out now, but understand and identify with everything you say.....

I think its really hard when you have a 2nd and they start doing everything, and they're so easy in comparison yet they need different things, and you have to try and balance everyone's needs, but the kids needs are totally different.

Do you get direct payments? That helped a lot, allows us to be a 'normal family' once or twice a month AND pays for extra help.

Also counselling. After 5 or 6 years of dealing with it by myself I've just had 6 months of counselling and its been really helpful to talk through everything.

[heartinthecountry]

Blu and gess - thank you. Always both so wise!

Luckily I do get time with dd2 by herself when dd1 is at nursery (though she has been ill a lot lately and therefore not been which hasn't helped). But yes, definitely there is an element of real anger at dd1 because she never allows us to do anything really together. I can't play with both my children at the same time because as you say gess their needs are so very different and dd1 just doesn't tolerate dd2 at all. I know there is an age gap (but far less of a developmental one) but it is more than that.

I get 8 hours dp's gess which is what I use to pay my respite carer. She is great - just wish I could employ her full time!

I think I do need to look in to counselling again. I did see an NHS counsellor about 3 years ago but tbh I didn't like him much and not sure I was in the right place to get the most out of it.

[ellis65]

My youngest in 9 years old, and my dd gives him a hard time, but you have to adapt things round SN daughter, also we never function as a family of 5, it is always me with the other 2 sons, and husband with daughter, or vice versa, we all have to learn to adapt to what hand you are dealt with.

[ellis65]

Gess: what ages are your kids?

[2shoes]

heartinthecountry TTR is a sn yahoo group that we set up about a year ago, just gives you somewhere private to talk.

[gess]

ellis ds1 (severely autistic) is 8, ds2 5 and ds3 2.

When were your dp's awarded? Is that 8 hours a week or a month? You could ask for an increase in hours if you feel that would help. For comparison I get 8 hours a week during school terms, 15 during school holidays. I'm OK at the moment as I have a backlog but I may ask for more during school holidays soon; they did offer me more recently. That may be particularly useful if dd1 won't tolerate dd2. That might improve. After 5 years ds1 has finally started to actually interact a little with ds2. He used to physcially shudder whenever ds1 went near him! DS3 sits on his lap!! I would never have believed that was a possibility.

The counsellor I used had a lot of ASD experience- made a big difference to effectiveness I think.

Agree with ellis about never really functioning as a family. We never all go out, or if we do then we split up, but ds1 then dictates the trip really so if we do its only for a walk or something. I sometimes still feel really sad about that, but a friend pointed out that she never really did whole famils stuff with her kids because there is a 9 year gap between her eldest and her twins. Which made me feel better about it. I still really really stuggle with not being able to go on holiday as a family- and I get quite angry about that. Sometimes I just allow myself to be angry for a while. Do you have friends in the same situation? I find offloading to them about life's unfairness really helps......

[heartinthecountry]

I get 8 hours a week gess. Which is okay. I'm not sure I would get any more.

I'm going to think more about how I use them though. At the moment I have a woman who looks after dd1, takes her out etc which is great as a break for me but I am wondering whether I need to spend more time with dd1 not less so that we can kind of 'bond' again.

[gess]

that can help. I find ds1 much easier when its just him without the other 2, we can do stuff. How does dd1 cope with dd2? DS1 reacted very badly to ds2 being born.

[heartinthecountry]

She seemed fine when dd2 was first born but now that dd2 is more of a 'person' I feel she is very jealous of her spending any time with me. Also hates her playing with any of her toys or generally being near her, let alone touching her. She hits her a lot and pushes her over a lot which I find quite distressing.

[heartinthecountry]

Lots of people have said dd1's reaction to dd2 is very 'normal' which I suppose it is. So obviously that is in a way a good thing. But I do worry that dd1 is never going to have any understanding of 'why' she shouldn't hurt dd2 which at least most kids will get when they are older.

[Pages]

I totally understand and sympathise. Since having DS2 I now realise how easy it can be having a child. DS1 is very sweet and lovely but he is a lot of work, and the combination of the pair of them leave me permanently exhausted.