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anyone out there with disabled partner and baby?

(8 Posts)
lighthousekeeper Sun 27-Apr-03 21:03:20

In brief: h uses wheelchair outside house, v whizzy and sporty. Inside uses stick and it's getting more and more difficult for him to carry our little chum around AND I don't know what he'll do when commando-shuffle turns into crawling as it will any day now and s is too fast for father. And our little chum is too big for baby slings so how is h going to transport him when h is using wheelchair? My lovely H is secretly worried that if I get ill or die (which I'm not planning on), social services will take baby away from him (altho rationally he knows this won't happen but it's a measure of fear and frustration). Have been trying to sort these and other practical issues out myself but now feel like SCREAMING because have asked GPs, health visitors, etc for help since before birth. My secret cynic thinks that h is not disabled enough to register on anyone's radar and everyone thinks we cope just fine. I know about DPPI and DPN but would just love to talk to someone else who has a disabled partner and a baby!

Meanmum Sun 27-Apr-03 21:08:18

I can't help in terms of people to contact as I don't have this situation but is there anyway you can rig up a harness system that will go around your husband that he can then clip your son into when he is in the wheelchair. Something like the harness on a highchair. I bought a simple harness from Ikea really cheaply as I needed to put it into my son's chair. Maybe something like this might help when they are out and about.

Jimjams Sun 27-Apr-03 21:36:19

I have a friend who uses a wheelchair. She kind of ties her 16 month old son onto her using a sling- when she needs to carry him in the wheelchair. It holds him quite tightly onto her lap. it's similar to the huggababy sling- any of the material ones should do. It seems to work well.

However disabled you are, SS etc are crap- or non-existent.

lighthousekeeper Mon 28-Apr-03 10:38:09

Thanks for these. Will try a fabric sling. Think we probably need to get involved with Disabled Parents Network and meet other people in similar position but am reluctant to do things on behalf of H as he's said he'll get involved, so need to be patient and let him do it in own time. Bit frustrating, though.
Have just discovered mumsnet and it feels like a safe place to be.

Issymum Thu 01-May-03 12:49:56

Hi Lighthouse Keeper

My husband also uses a wheelchair outside house 'v whizzy and sporty' and a stick inside the house!

DD is now 26 months old and DH often carries her on his knee on the chair and the pair of them roll along together. It gets a lot of second looks in Sainsburys.

At first we bought one of those straps you can put around a suitcase (broad 4" webbing with a clip and an adjuster", the idea being that it could go round both of them together and stop her from falling out of the chair. But in fact DH has never used it. DD seemed to understand very early on (before 2) that she needed to sit still on DH's knee and DH says that he can feel as soon as she makes any kind of move or adjustment. I still think the strap is a good idea, but there really doesn't seem to be a problem. DD and DH will go off alone together to feed the ducks, although generally we go out as a family and I will pick up DD from DH's knee if he has to e.g. bump down a kerb.

Other issues? DD has climbed into the chair at home and tipped it over, so watch out for that!

DD can obviously walk and run now faster than DH. But it doesn't actually seem to cause a problem. I think we have subconsciously used a mixture of home safety features (stair gates, cupboard locks etc.) and discipline. Also, within the home, if DD does run off, DH normally stays still and shes back within a minute or two because she's bored and lonely.

Will your husband manage by himself? Yes. Currently DH baths and puts DD to bed any night when I get home late from the office. However, a whole day alone together might be quite tough.

Will Social Services take DD away if you are not there? I doubt it? They've just approved us to adopt a second child and that has to be on the basis that there is a risk (however slim) that I won't make it! And no, we haven't worked out how DH's going to bath a baby and a toddler, but we will extemporise, even if it's just a matter of drafting in a willing teenager one hour a night as an extra pair of hands.

Sorry to go on so long but I would also love to talk to someone else who has a disabled partner and a baby. Does anybody know how we can correspond 'off line'?

Meanmum Thu 01-May-03 12:59:23

Issymum - write an email to contactus@mumsnet.com asking them to forward your details on and they will do so. I'm not the one with the disabled partner but am always happy to talk.

lighthousekeeper Sat 10-May-03 19:28:37

Issymum - you should have an e-mail waiting for you from me! Am so pleased I posted my message! It's been a bit of a tough week - DS has started settling in to nursery prior to my return to work and I've been dreaming all night every night about DS being alone and not being able to get to him and other psychologically obvious stuff. Also REALLY irritating conversation with ILs who can't understand why we need a car seat on holiday:

FIL: well, you didn't have car seats and you're ok.
DH (After much provocation): doesn't it make your blood run cold that we didn't?
FIL: It makes my blood run cold that you insist on having one.

AAAAAAAAAAAAAAAArgh! Also irritated that ILs think we're being extravagant and excessive because we think we need a bigger car (but will never be able to afford one, so it's hypothetical anyway). Currently: boot filled by wheelchair, front seat filled by buggy, back seat filled by child in car seat, second parent, changing bag, ancient newspapers and half empty water bottles, etc. Luggage? Who needs clean pants?! We bought a powertrike (powered mountain bike type attachment that fits to a wheelchair to make it usable off-road) so that we could go for walks in the country and we've not been able to use it since ds born because NO ROOM IN THE CAR! Don't these people understand?

I don't know WHAT came over me! Probably a gush of goodwill towards mumsnet and subsequent desire to be very honest. Thanks so much for all the advice. Much much much appreciated.

lighthousekeeper Sat 10-May-03 19:29:10

Issymum - you should have an e-mail waiting for you from me! Am so pleased I posted my message! It's been a bit of a tough week - DS has started settling in to nursery prior to my return to work and I've been dreaming all night every night about DS being alone and not being able to get to him and other psychologically obvious stuff. Also REALLY irritating conversation with ILs who can't understand why we need a car seat on holiday:

FIL: well, you didn't have car seats and you're ok.
DH (After much provocation): doesn't it make your blood run cold that we didn't?
FIL: It makes my blood run cold that you insist on having one.

AAAAAAAAAAAAAAAArgh! Also irritated that ILs think we're being extravagant and excessive because we think we need a bigger car (but will never be able to afford one, so it's hypothetical anyway). Currently: boot filled by wheelchair, front seat filled by buggy, back seat filled by child in car seat, second parent, changing bag, ancient newspapers and half empty water bottles, etc. Luggage? Who needs clean pants?! We bought a powertrike (powered mountain bike type attachment that fits to a wheelchair to make it usable off-road) so that we could go for walks in the country and we've not been able to use it since ds born because NO ROOM IN THE CAR! Don't these people understand?

I don't know WHAT came over me! Probably a gush of goodwill towards mumsnet and subsequent desire to be very honest. Thanks so much for all the advice. Much much much appreciated.

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