Angry about treatment of niece with CP, need your advice

[ContinentalKat]

So mil and sil have been for a visit with dn who is 4 and has cp. cp mainly affects her right arm and leg. We only see them 3 or 4 times a year so obviously are not involved in their daily life, but every time we do see them I get so angry and sad about the way she is treated!!!!

I'm going to give you a few examples:
Dn sits on my dd's Tripp trapp chair when she is here and has trouble getting on and off. Rather than lift her up, I told her "try to get on backwards and see if you can manage yourself", standing next to her ready to assist. Mil pushes in and lifts her up.

Kids wanted to play with wooden Thomas set. I show dn how to put tracks together and leave her to figure it out, 30 seconds later mil is building the track for her.

Kids go upstairs or outside, dn is told "no darling, you're not allowed to because you are disabled". and your trousers could get dirty

I gave dn child safety scissors and get dirty looks and panicky screams about "she can't do that" yes she bloody can if you show her how to hold them

I get that the nappies and dummy at 4 might be ok, although I frown upon them.

What I don't get is the attitude! I was told today that "she can't be taught because she is disabled" and "you can't say no to her because she is disabled".

How on earth is she ever going to learn anything if they keep treating her like a baby?!? I am so sad and angry for her. I know that she has limits, but should she not learn what she can do rather than be told what she can't?

Please correct me if I am totally wrong on this one. Any good advice out there?

that sounds really bad actually. They actually call her disabled? And tell her she can't do something normal like go outside or use scissors? Is it MIL who does this, or her mother too?

They are both the same. Best thing for her seems to sit on the sofa and watch tv.

Thanks for the quick response, btw.

I have a cousin that has mild CP - ballet has been his salvation! He looked REALLY out of place in the classes at 4, but in the abscence of cash to pay for private therapy his mother kept him at it. It paid off big time - it's only hen he's really tired that you notice it noadays.

He still does his ballet religiously at 15 so you can guess that he is fully cognisant of just ho good the benefits are too him. (Not many teen lads into ballet).

Ballet classes are my suggestion - buy them for her as a block for a gift. She's being treated like a precious princess so may be permitted to attend & I've seen that it does have very real theraputic benefits fo mild CP.

School and nursery ill knock this parental attitude on the head over time, as the modern approach is all about enabling these children. There just aren't the resources to "baby" kids that don't need it.

Poor kid.

It's unfortunate, because they are limiting her in many ways. But I would be careful about these type of comments:

because it just sounds downright judgemental in a non-constructive way IYSWIM. If someone said that to me about DS2 (who uses nappies at night at 5yo) I'd be quite angry, as potty training is simply not always straight forward.

I think the only thing you can really do is encourage when you can, and that's about it, as it's not your child. Once she starts school, she will be outside of their influence for a few hours a day, so she will get loads of encouragement to do things on her own.

at the telling her she is disabled.

It does sound like they are limiting her development by assuming she won't manage or doing everything for her. However, having a DD with mild CP myself I do sometimes wonder how my reactions come across to others. I do constantly have to say 'be careful' or 'do you need help with that' because I know what she can do and what she has difficulty with.

Also my DD is 5 and still in nappies - not much that can be done if bowel function etc has been affected.

Phew, I really needed to vent, I am always so rattled when they come over!

I am hoping that things will change for the better once she starts reception in mainstream school in September!

@bochead: Will definitely check out if we can pay for some ballet lessons for her, but as we are not involved in daily life mil and sil will have to take her, so we'll see how that idea will go down.

@Triggles: I do have a problem with her still having a dummy in all the time at 4!
Potty training is a whole different story, and I know how difficult it can be. Still don't understand why they can't try? AFAIK bowel function has not been affected.

Nope. Sorry. Judgemental. I am sorry but it's not your business to "have a problem" with her having a dummy or not potty training. Wind your neck in on that one. You are way out of line on that.

I think the issue with nappies and a dummy at four is possibly also a reaction to the fact that she appears to be being treated like a baby in every other aspect. If she was being encouraged to be independent in other ways then it could be conceded that the nappies at four had to do with her disability rather than the inability to allow her to grow up as seems to be the case here. I think a dummy at four is wrong, sorry. If that makes me judgemental then so be it .

Op for me personally I would find it impossible to keep my mouth shut. As someone who grew up with a disability I have had first-hand experience of people who believe that the disabled are incapable of being independent. My nan on my dad's side of the family was particularly bad for this, but fortunately we didn't have all that much to do with her, but I can see that if I'd grown up closer to her it could have been an issue.

I have also seen first-hand the damage that over protecting a child can do, and the children I went to school with (I went to a specialist school for people with visual impairments) whose parents did absolutely everything for them were very obvious, and dare I say it, found it much harder to adapt and get on in the real world as they grew up.

Doing everything for a child with disabilities is not helpful to them at all. I can see how a parent might feel they should, but it is not right and it will not help her in the long-term. If this girl is going to grow up into a yung woman and want to lead an independent life she will not benefit from having had everything done for her as a child.

My DD is just 3 and has diplegic CP (only legs affected). We have always encouraged her just to get on with it all. Does your DN walk? DD does, although she spends a lot of time falling over. It makes me chuckle how, if she falls over outside, people come rushing to her aid while I just stand back. My reasoning is that, if she's not crying, she's fine and just needs to get back up - and that is easiest achieved on her own, because helping her invariably causes her to struggle to regain her balance.

Before she could walk, we invested in a heavy duty puddlesuit type thing (called a Tuffo) so she could go to playgrounds in the winter and crawl around between the equipment. We always encouraged her to have a go at something before helping.

However, I do hover round her, telling her to 'be careful' because she CAN'T do all the things her friends can - her balance isn't great, so I'd rather she didn't stand up on top of a climbing frame, not holding on, she can't just step into and out of patio doors, etc, so I help her, etc. I also try to stop the able-bodied youngsters from pushing her out of the way when she's on the climbing frame, etc because she may well completely overbalance, even though they didn't mean her to.

This means she's finding it very difficult to let me go during playgroup. She feels very vulnerable without me there hovering. Maybe I've been overprotective, but I would do the same again.

She has a dummy at night still - She has operations and medical procedures where it is very useful to have some form of comforter and she doesn't have a particular toy or blanket comforter. She still wears nappies. I don't know whether the sensations are there for her or not - sometimes I think they are, at other times I'm not sure. I haven't been terribly proactive with the training, but I don't think she's ready. She also doesn't have the balance to pull her trousers down and up to go.

I guess what I'm saying is that some of your SIL's decisions may be poor ones (the attitude that getting dirty/cutting/etc mustn't be done) but that some of them may not be poor decisions but simply the way things have turned out so far.

I don't know whether you'd approve of my parenting or not - and it doesn't bother me. I parent the way I parent. I don't do it for others' approval, I do it because it feels right. She loves me and that's what matters - and she will reach her full potential whether or not her legs don't work. I will make sure of that!

what are the posibilities of you spending more time with her, could you take her out on your own with your own dcs?

I understand that you are not keen on how she is doing things, but I also think it's very important for you to remember that this is HER daughter. Not yours!

I can safely say that there are some people that don't agree with some decisions we've made about DS2 in regards to his SNs and development. I am sure that everyone on this board has had family members that are (possibly) well-meaning but attempting to interfere in this way and question their judgement in how they raise their child. It's usually not a good scenario.

As an aside, I'm wondering (sorry, don't recognise your name as a regular poster on SNs board, so just asking) if you have a child with SNs. As a parent, we feel bombarded by well-meaning advice from all corners, and trust me, family "advice" can be pointed, rude, and interfering in a highly aggravating manner. My sister, for example, has given me TONS of "well-meaning advice" because she feels she knows it all, even though she has never had a child with SNs and isn't even that horribly familiar with DS2's dx's.

DS2 is not potty trained at night time, and he is 5yo (almost 6). We've had loads of comments from numerous family members about how we're just lax and letting it slide, but actually we've spoken to continence nurse and paediatrician and all agree that he is actually not ready yet. Based on what we know of his development and symptoms, he is not yet producing the hormone needed to acquire night time dryness. I haven't told family members that. Why? Because it's none of their business, and honestly if I told them, they'd just come up with some other reason I should be potty training him, so really, what's the point?

We've also had a few comments that his behaviour is due to lack of discipline, not SNs, as well as comments that we're not "toughening him up" because we don't push him too hard with physical limitations. We encourage, we push some, but it's never enough, as far as some family members are concerned.

You know what? They don't live with DS2. They are not his parents. We are. And being a relative doesn't give you the right to constantly question every parenting decision made.

I think you need to back off the potty training and dummy thing. And while it's okay to suggest perhaps allowing her to be more physically able, I wouldn't push it too hard. And if you in turn take her out with you just to test your theory that she needs more of this or that, you risk completely alienating her parents. Because if someone took DS2 on an outing just so they could prove a point by getting him to try doing things he doesn't normally do without assistance, I'd be LIVID. And it would be the last time that person had contact with DS2.

Sorry, but relatives interfering and constantly questioning parenting choices (and look at your OP... doesn't seem like you think they are doing ANYTHING right!) is a real hot button for me.

I also have a DD with CP, who is appears very switched on and only physically affected. We are very pro her doing as much as possible herself but it is not always possible.

I also think the thing to remember with CP is that it is a brain damage and although somethings the physical impairments are the most noticable there can also be sutle (or less sutle) other differences. My dd is also 4 and in nappies but talks about going to the toilet all the time. But she still just doesn't seem to get it. She thinks its a fun thing to go and is quite happy to sit there for hours but has no awareness of when she wees. I often get the "look" from family members when she says she wants to go for a wee or she is bursting and I don't take her. But they don't know that it is the 50th time that day she has asked and I have taken her there, stayed with her for maybe 30mins listening to her talk to her imaginery friends. 2 seconds later she will be asking to do something different. There are lots of little difference I notice about her compared to other kids her age. Most of which are only apparent once you spend alot of time with her.

I try to help her do as many things as possible but as much as it pains me to say she does also need to be aware of her limitations. I wouldnt say you cant do that because you are disabled but I do have to say no sorry honey you cant do that, climb on a climbing frame, jump on a trampoline, going upstairs without me helping her then staying with her. She also has to know that I am a person and occasionaly I need to do other jobs or even sit and have a chat with a friend for a while.

I think I am trying to say that unless you know the child well there may well a hundred and one things going on that you dont know about. The scissor thing may sound like an over reaction to you. But I think I have said the same thing when visiting friends houses and they get something out so normal for them that I know DD will not be able to do it. It makes her distressed as she really wants be like her friends and that in turn upsets me. Sometimes stepping out into the NT world can be very hard because people honestly have no idea difficult (and judgmental) people can be.

Thanks for sharing your opinion with us! How very helpful!

I'm wondering how much you know about the neurological, sensory, medical & behavioural issues that lead to a disabled child like mine being in nappies in the daytime until he was over five ....gasp... I can feel your frown from here.

OP, I agree with you that telling her she can't do things because she's disabled is completely wrong. As someone with disabilities myself, I am very glad that I grew up without it ever occurring to me that I couldn't do things. Of course she should be able to have a go at figuring out things like train tracks and getting in and out of chairs.

I'm really angry about this actually.

Why would you come to the special needs board to tell us you disapprove of children being incontinent at four? 'Cos we just love cleaning up shit & do it out of choice ffs

Hi all,
thanks for all of your feedback, this has really helped me think things through.
Maybe I should have mentioned in my OP that I never voice my thoughts in RL! I know that dn is not my child.

I think, ultimately, it's not even about my dn's SN, sorry for posting in the wrong section. It is simply the fact that my sil's style of parenting is the exact opposite of mine.
Even before children we weren't close. We are different people, living very different lives and making extremely different choices in our lives. By coincidence we have become family, when we would never ever have chosen to socialise otherwise.
It is easier to accept this fact when there are "just" adults involved.
Unfortunately, having children makes everything a lot more emotional.

I have now realised that we will never be able to gap the bridge between us. For every choice they make, I would make a different one. If they weren't family, I would turn my back and not care.

There is absolutely no way that we will ever see eye to eye. Imagine all the bun fighting topics on MN: breastfeeding, co-sleeping, baby-led weaning, you name it, we're on opposite sites of the fence. There will never be any middle ground.

I cannot and will not change the way I treat dn. I know that she enjoys her time with us. I can hope to lead by example, but I think that will have to be it.

Now I need to print this off and re-read it every time I get upset about my dn.

:) I'm glad you didn't read and flounce - you have gone up vastly in my estimation (Not that you probably care either way what I think!).

But you're right - different parenting styles can be very difficult to cope with - particularly if you are family. I guess the thing to do is to remember that DN is not the parenting style - she's just DN. Yes, enjoy your time with her but also don't go out of your way to get her to do things you know her mum is opposed to - that will just cause issues between you and SIL.

Perhaps if you have an idea of something she could do, talk to SIL and say 'I thought I could do ... with DN, I realise she'll need support to do A, B and C, but I think if I keep my eye on her she'll be able to do it. Is that ok?'

I tend to find it difficult to leave DD to do an activity with someone else, because they aren't with her everyday and may not realise what she might struggle with - and she may not tell someone if she is struggling (or may not even realise that what she's doing is dangerous). If you show you've thought about the difficulties, it would help. IYSWIM?

"Why would you come to the special needs board to tell us you disapprove of children being incontinent at four? 'Cos we just love cleaning up shit & do it out of choice ffs"

I dont think op came to the board to specifically tell us she disaproved, she asked to be corrected if she was wrong and for any advice. I dont think taking such an agressive stance is really necessary nor helpfull in discussing with op the issues she may be missing an an outsider to the situation of her neice and sil.

I have no issues following parental edicts so hadn't really thought about this in my initial response. A recent thread over on AIBU woke me up to how people can get their knickers in a right twist of others choices - it was about an 11 year old's seeming early bedtime.

Twice at DS's first school he was given foods containing dairy that made him ill enough to miss a week of school per incident. I was furious! Some ijeet wanted to "make a point" re his diet, (packed lunch with "odd ingredients" like quinoa or sweet potato muffins or sardine & spinach sarnies).

Not going against the parents wishes re H&S issues IS very important methinks. Tbh it's better you don't see DN at all if you are likely to undermine your SIL's parenting on H&S issues, as at the end of the day it's her that has to pick up the pieces when things go wrong.

Thanks, Galena. That is really valuable advice as well

I am going to report myself and ask for this thread to be deleted, as the underlying problem is not SN related.