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DD came back from a weekend with my mum saying she wasn't allowed to use her wheelchair.

(17 Posts)
Hangingbellyofbabylon Sun 28-Jun-09 23:03:05

My dd is 3 and has cerebral palsy but has just started walking small distances unaided. She's very wobbly and tires quickly. She mainly uses a kaye walker outdoors and her wheelchair if we have to go further than about 100 metres.

My mum is normally good with dd but always encourages her a bit too much iyswim, doesn't accept that she gets tired as well. She took both my dd's away camping for the night in her VW camper van, when it came to picking them up my step-dad started fussing about how much space the wheelchair takes up hmm. Yes, we know but fgs she uses a wheelchair, not taking it is not an option. They didn't take her kaye walker and I gave in on that one as it was going to cause a fuss.

When they got back today dd was incredibly tearful and clingy. As usual mum gave them a fun packed weekend but they did way too much and dd got beyond exhausted. She just doesn't get it that getting her to do loads and loads of walking does not make her 'better' - it just makes her cranky and achey and unable to walk at all the next day.

When it came to bedtime my lovely little dd was just sobbing and sobbing and after about 30 mins out came this garbled sentence about her being so so tired and nanny wouldn't let her sit in her wheelchair sad. I don't know if she literally wouldn't let her or more likely that dd didn't feel able to ask as my mum pushes her so much to walk all the time sad. I just feel desperately sad for my little love and also despondant that even my mum who sees more of dd and in theory knows her better than any other relative - still doesn't GET it angry.

She is doing so so well and I'm proud of her walking but she just doesn't have the same stamina as other children and my mum needs to know that. Just before she fell asleep in my arms she said 'please mummy no walking tomorrow, I don't want to leave the house' sad.

Guess what? I've said nothing to my mum because I daren't upset her as I need her help so much at the moment for various different reasons. Pathetic really.

daisy5678 Sun 28-Jun-09 23:09:09

shock sad

Poor you and your dd.

Is it worth bringing it up in an unrelated way? I do this a lot with my family e.g. if they keep giving him sweets/ chocolate, which I don't let him have, I don't always bring it up then, but about someone else (often totally made up)e.g. "oh, it really annoyed me when x gave ds sweets the other day, because it makes him hyper and then he wants them all the time. I wish they wouldn't do it"

Crap example, but you get what I mean.

People don't get so upset/ defensive when it's abstract and not about them. But they may think twice next time!

Hangingbellyofbabylon Mon 29-Jun-09 09:17:57

thanks givemesleep - I think you're right and I'll try to have a diplomatic word with mum when I see her next.

bullet123 Mon 29-Jun-09 10:52:08

Does your dd have any hospital/doctor appointments coming up? If so, could your mum come with you to them? She might listen if someone else was to tell her about your dd's difficulties in walking.

5inthebed Mon 29-Jun-09 10:57:30

Your poor DD sad. Don't want to sound rude, but your mam sounds like she is in a bit of denial about your DD's CP. My mam is the same about DS2's autism, it is very hard going.

Bullet123 has given a very good suggestion. Might help your mam understand how important it is for your DD to use her wheelchair/kaye walker.

2shoes Mon 29-Jun-09 11:44:42

bullets idea is good.
your poor dd, i think I would stop visits until your mum behaves.

Hangingbellyofbabylon Mon 29-Jun-09 13:07:07

my mum does come to appointments and also comes to conductive education every week I just think she's just so blinkered and as soon as she started taking a few steps she wanted to believe that she was just the same as any other walking child. I do need to talk to her I know. She's always having a go at me about me not being positive enough about dd. But what's the point of being blindly positive and totally unrealistic?

springlamb Mon 29-Jun-09 13:41:12

When ds was younger, I used imaginary convos with consultants to relay back to family on things like this, eg

SL: "So I asked the consultant, well my instinct is to make him practice doing that constantly. Should I be? And the consultant said no no only about half an hour a day or you'll affect such-and-such a muscle. So I'll have to watch that..."

I found it easier to do it this way as whatever they were doing wrong it was done out of love and a wish for ds to achieve his potential. Also, they were my support network and I didn't want to upset them. Also, I am a coward.

springlamb Mon 29-Jun-09 13:42:55

Of course, nowadays ds usually deals with them himself - usually by telling Grandma to 'bugger off and leave me alone. Go and pick on someone else'.

cyberseraphim Mon 29-Jun-09 14:10:00

I think these attitudes are very common esp. in the older generation. Neither of the GMs (Grandmothers) in our case can understand that DS1's speech will not automatically progress just because he has the speech of a two year old now (He is 5) they see it as talking/not talking and in your case walking/not walking. There is probably a Heidi element too as many older people were brought up to believe that children/people with any issues were just 'lazy' and needed to be 'pushed' sad

HairyMaclary Mon 29-Jun-09 17:32:40

Oh springlamb I do that too! I'm so glad to hear you say that I thought I was nuts but it does seem to work! I have a lot os sympathy HBOB, while DS still only takes a few steps he gets v tired in lots of other ways and it's very hard to get the message across sometimes.

laumiere Mon 29-Jun-09 19:51:31

Poor you and your DD, CP exhaustion is awful. DS1 is 3 and just walking, but he keeps pushing himself and doesn't understand about getting tired. We overdid it on Sat and are still suffering today!

I explain it to people that he has to work 2-3 times as hard to move his muscles, so gets tired/burns a lot of calories/easily overheats.

Hangingbellyofbabylon Mon 29-Jun-09 22:25:25

I talked to mum tonight and she admitted that she didn't bring the wheelchair when they went out to a model village yesterday and that she didn't realise how tired dd would get. We always bring it with us because when she gets tired she needs to sit right away. I think dd panicked a bit without her chair and that was what upset her - last night we had to take her to the car to show her we had the chair and it wasn't with my mum still sad. I think my mum learnt a few lessons this week and although it's not fair that dd had to suffer in the process, at least from now on things could be easier.

On a different note... laumiere, I love the pics of your two in the buggy pod and maclaren elite! so cute. I still have no real idea how I'm going to transport my two around when this baby arrives in September..

5inthebed Mon 29-Jun-09 22:33:04

<sneaks on Laumieres profile>

Gorgeous boys, I love your DS2's hair! I need to invest in a buggypod I think!

Mitchell81 Tue 30-Jun-09 07:30:44

Hangingbellyofbabylon Sorry to hear that DD was upset, glad that your mom has now realised what DD is capable of.

laumiere Can you still fold the maclaren with the buggypod attached. We have both and I am sure managed to put it on and fold it with DS1, but tried to put it on again and it doesn't fit very well at all and buggypod looks lopsided. Unless you attach and it can't fold iykwim

laumiere Tue 30-Jun-09 14:33:23

Thanks for the compliments on the DSes! I have to admit I'm naughty with the Pod, it's supposed to be for 6mo up but as you can see DS2 fits quite snugly at 4mo!

mitchell no, we have to fold it, then take it off in folded mode and fold the MC. To be honest if I have to go somewhere where the MC needs folding (like a bus) I use a pushchair with a buggy board for DS1 and make sure he sits and rests as much as possible. The Pod is very warm too in this weather and the sunshade is hopeless so I hook a muslin into the rain cover and use that instead. I have noticed it 'pulls' the Maclaren frame down on that side too, and yes, once you take it off and put it on it looks lopsided. We don't take it off any more as I had to get the screwdriver out every time!

Mitchell81 Tue 30-Jun-09 16:38:13

Thanks Laumiere, DH is getting so fed up with me making him change buggy and trying it on different ones, but I am never happy with the fit. But with summer holidays starting on friday, need a solution. So might look into attaching it so it can't be folded and see from there. Thanks again, sorry Hangingbellyofbabylon for hijacking your thread.

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