Don't know how to give more time to dd1(NT) who is suffering due to dd2(SN)

[Hangingbellyofbabylon]

dd1 was only 18 months old when dd2 arrived in the world, 5 weeks early. She was a difficult baby and is a difficult child - of course now we know she has CP it makes us understand a bit more what she was battling with from birth. DD2 is nearly 3 and is very bright and verbal but struggles emotionally and physically - walks with a kaye walker at present, tantrums, very babyish and clingy etc.

dd1 is 4 and an August babe so the youngest in her class at school. In the last year she has developed severe constipation and is now under the paed at hospital. She loves going to hospital and the constipation has become her 'thing'. DD2 has cerebral palsy, dd1 has 'poo problems'. We saw the paed this week and he mentioned that lots of the kids on his books with constipation have a sibling with SN and it seems to be a fairly common thing .

In recent weeks we have had lots of new 'stuff' for dd2, her special toilet seat has arrived and her stair rail is being fitted tomorrow. In response dd1 has upped the ante and taking to having 3 or 4 massive wee accidents from getting home from school to bedtime (yet stays dry all day at school). DD2 has her weird tantrums that go for up to an hour, so dd1 shouts louder and has started kicking and hitting.

It is crap for dd1 - I know this but cannot change things. Dd2 does need constant extra help and will for the forseeable future. Dd1 just doesn't get enough time and so is making me have to give her attention. It makes me feel guilty and sad and I just wish there was an answer.

No one gets it, they only see the little disabled girl who is doing so well with her walking frame they don't see the fact that every single aspect of our life is topsy turvy and dysfunctional now. I wouldn't want dd to be different I just wish I could double myself so I could also give my very special dd1 the attention she needs too.

I dont quiet have the age difference but have had similar toilet struggles with DD1. Though not as severe are your DD1.

My DD1 is 3 (30th Aug birthday) DD2 is 9months next week and Severe CP I also have a DS who is 9.

DD1 lost her confidence and wouldnt go to the toilet without assistance, we are just gaining a break through with the help of the nursery and unfortunately its just been time and confidence building, which is so hard to do with the added strain around.

I have to say I rather the toilet issue than my DS who tried to jump out his bedroom window to the sobbing shouting of goodbye world

Could you buy strange little treats for your DD1 when your DD2 needs equipment? I dont know maybe as DD2 needs a special seat for the toilet but you need special bottom wipes to go poo we will go get them tomorrow or special soap for when you poo???????long shot.

I have to say with the tantrums DD1 has responded very well to just being grabbed and cuddled and doing deep breaths 1 to 3.

Good luck x

Thanks Josey - I think you've got some good ideas, dd would love the special toilet wipes and stuff . things must be tough for you too, it sounds like you're doing a grand job. Your poor ds, it must be heartbreaking to see him so sad. How are things now?

Special incentives for to stay dry worked well for my ds2 - star charts, lots and lots of praise, a present at the end of every dry week etc.? We eventually decided that the only way to give all 3 kids quality time was for me and dh to take them out separately, not as a family. Sadly not an easy option if you're on your own, granted. I felt that some of ds2's issues were about school rather than ds1's disability though - they are so knackered and lack individual attention that they let melt down in their own ways as soon as they get home.

Definately try to find some way of having uninterrupted special time with dd1. I had 3 in 3 yrs, 3rd severe sn, and from early on have had extra help to ensure all get time with adults. Social Services can put you in touch with volunteers who can come and help - is it surestart?

Agree is there anyway you can afford a mothers help for a couple of hours a week? Or could DD2 have some sort of respite - or even if your partner could look after her for a couple of hours whilst you and dd have some time together.

However if thats not possible at the moment

*Write little notes to DD telling her how special she is, why you love her etc - don't mention dd2 in it - just let the letter be about her - then leave it somewhere for her to find.

*Get out photos of her when she was little and maybe let her help you organise the photo album - telling her stories about what she was like as a baby etc or silly stories.

*Share a bath together

*Make a worry box where she can put her worries - then you can read them together (know it's hard at this age though)

*Come up with a list of fun things to do ie painting, reading a book, going to the library, going to the zoo etc an dwhen you do get a chance of 1on1 then she can choose one of the activities and enjoy it with you

It is very very hard. I feel I am only now having a chance to really get to know ds, who is 8; because ever since he was born, his elder sister has drained so much of my energy. I am so grateful that it is happening before he is grown up, but I do feel about all the time he has had to take second place.

Can't offer much in the way of practical solutions- most things you'll have thought of anyway- just sympathy.

Things are actually really good now, I was given a bit of a reality check, DS has always struggled a little bit a school and homework etc he sees a punishment from ME the insident was over a homework argument. It hit home though that I needed to give him a bit of a break with him being so much older he gets a bit more grief.

Our toilet issues with DD have started to resolve with sticker charts etc, big sister stuff really does work.

Im very stubborn and I carry on as though DD2 didnt have a disability, I try my upmost to have appointments when DD1 is a nursery or the ones that come to the house(SALT,PHYSIO,OT) all include DD1 and get her to do some things with her sister, now she does the things off her own back. example Im doing dinner DD2 in her tumble form and DD1 plays hide and seek round the chair or brings her a toy and rubs it up and down her arm over her hand and cheek, then sings the songs.

Sometimes I think My dd1 is just an amazing person and will develope into a profession when she is older to help others, but we wouldnt know she could do this if it wasnt for her sister so it must be because of her way of life.

It wont be because your not giving enough attention its just they need a special attention themselves, special wipes that sister cant use or my DH works away so we have a night where DD1 sleeps in my bed and thats enough when she is down.

Please remember this kind of thing happens in the most blissful situation its standard sibling stuff just more prominant due to dd2s circs.

hugs x

Gosh Riven how old is your DD1? I dont want to be intrusive but do you know where she is and have contact?

I will look into restbite whenDD2 gets older but my view at the moment is any new baby into the family would be disruptive.

Riven as if you havent had enough, I bet you wish you could hit those tossers in the ass with an air gun or the likes.

Although there are similarities to our dd2s I have been very fortunate that my DD is quiet and will happily sit listening to what is going on round her and hopefully seeing things now although limted. Infact my dd1 who is 3and a half is playing with her just now showing her how to work her toys

If I was in your possition I think I would be begging for all the rest bite in the world.

How is your DD just now anyway settling with the PEG?

Thanks for all the great ideas - things are loads better. We've been showering dd1 with extra love and not expecting her to be quite so grown up. She loving all of the extra hugs and I've even picked up and cuddled her even though she's massive cos I think she needs to feel a bit coddled. (not that she doesn't get cuddles normally). I've also been praising her for every little thing she does that is good even if it's every day stuff like putting shoes on the shoe rack. I found on Friday after school that she'd also been having a crap week at school with all her friends refusing to play with her so I think that also contributed to all of the toiletting issues. Things have been loads better, no accidents today or yesterday at all . Sometimes it's so easy to get wrapped up in dd2 and all of her achievements that I forget that dd1 is a shining star as well.

Thats brilliant news really pleased for you.

I had a girls night with DD1 tonight we went to bed together watched sat night TV and I pleated her hair so it would crinkle in the morning. I was going to paint her toes pink(she loves that) but she fell asleep while I was doing the hair. She was just full of herself tonight though, she is still sparked in my bed, think im going to have to fight for a space.

Its amazing how little things make a HUGE impact.

I try doing something to make her giggle once a day as well even if its giving her a quick tickle or racing her to the car after nursery.

Really hope you carry on with the ups x