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General Disabled Parents Chat

(116 Posts)
weegiemum Mon 18-Jun-12 19:14:25

Several people have suggested that we should have a general rather than specific chat for parents with disabilities so I thought I'd start it!

I'm weegiemum, I've got 3 kids at 8,10,12. I have an ongoing neurological condition called CIDP, which gives me numb hands and feet, arms and legs, lower face, and altered predation so I can't tell where my lower limbs are if I can't see them!

The result is I have no balance, limited walking ability, have a wheelchair and walking aids, and can't do fine motor stuff. Sewing, writing, cooking, knitting etc all ruined.

Just wondered if, whatever you've got, however you're disabled, you might like to join in here!!

SunnyCarrie Tue 03-Jul-12 11:26:45

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

SunnyCarrie Tue 03-Jul-12 11:28:15

Sorry that should be how to play with baby when you CAN NOT get on the floor hahah pesky rubbish fingers smile

Carrie x

SunnyCarrie Sun 08-Jul-12 15:50:28

Ok I have Juvenile arthritis since 15 months old, nothing like the older persons type which is wear over time on cartilage, this is an immune system fault where the immune system attacks every thing in a body, every joint can get eaten and sometimes organs are affected. I had a hip replacement at 12 but many other ops before that, took my A level exams and uni finals in hospital hitched to an IV of morphine after my latest replacement surgery each time.

I have limited mobility and deformed joints and have annual surgery. I have been on chemo type medication injections since I was 8 years old.

I have a toddler boy who is healthy and my joy. He is a bright little man, so proud of him.

I don't know what it is to run, sit on a sandy beach and build sand castles, walk up a hill and see a view or sit in fields with grass under you in the summer. I therefore don't miss these things like perhaps adults who get illness later in life do. I feel so sorry for adults who suddenly develop disabilities later in life because you can see pain all over their faces whilst their bodies learn to adapt to pain and anxiety on them whilst they work out how they will adapt etc.

I don't bother being down with my arthritis because that doesn't draw people in my experience, in fact it is quite normal for people who are well to shy away because really what can they say, they don't know what to say to make it better and really nothing can be said to change things so I smile and happily enjoy what I can in life. This seems a positive way to deal with things to me. It had worked for me in many ways but at times when am very ill it can be a little isolating as I don't want friends to see me having to be wheeled on a commode to the toilet which is what happens for quite a while after surgery both in and out of hospital.

I have good friends, all healthy and most athletic who often forget I am unwell despite clear visual cues of wheelchair and wonky hands etc but I love them when they say hey let's all go ice skating, I love them because I feel proud I am doing a great job of making them see past disability which not only is great for me but for others with disabilities that they meet smile I never do go ice skating clearly but I am the social organiser or glue as they say of the group so if I don't organise it it doesnt happen!

Nice to talk to you, this is a good place to come when I need support which to be fair my mates think I am so grounded and strong I am their counsellor never other way around which gets a little exhausting on top of being a mummy on top of coping with rubbish body difficulties.

Right I am organising a retro party next so best go feed my son,read him some books and start thinking of ye olde games to do at party that I ,and my husband who also has youth arthritis, can whoop their bottoms at heeheehee.

I love festivals by the way, has any one been to the Larmer festival ? Isn't there supposed to be a children's festival with Zingzillas and Mr Tumble etc ? Can't remember what it is called but think it is in Devon, sounds a good time for little ones smile

I have an apointmen about carpel tunnel surgery on Friday. At the moment I'm going for it (resting just isn't cutting it!) but I may lose my nerve....

Rollersara Mon 09-Jul-12 10:07:06

Let me know how you get on Lola, I'm having both wrists done next month, just waiting for a date!

NoHaudinMaWheest Mon 09-Jul-12 13:56:15

Hi thought I'd join in. Waves to Lola and Ben10. I have ME and am having a relapse at the moment. I have DS 15 and DD 12. DS has Aspergers syndrome and Obsessive Compulsive Disorder the latter severely. I have also had carpal tunnel syndrome and had both wrists operated on. I would say go for it - it makes an enormous difference. I had my right hand done last year. I had been putting it off for years because of DS's needs but it was such a relief to get it done finally. It did take a while to recover (about 2 weeks to get the use of my hand back). But I can now write type sew without having to stop every 2 minutes. I would definitely recommend it even though in my case I still have residual symptoms. In my (pretty extensive) experience nothing else works. Good luck with the appointment Lola!

flowerflo Mon 09-Jul-12 14:17:21

Hello all. Sunnycarrie - I went to the Larmer tree festival a couple of years ago. Really loved it - good mixture of music, arts, comedy etc. I also went to the End of the Road festival last summer when I was pregnant (same venue as Larmer tree). I did enjoy it but stupidly the disabled camping was down a hill????!!!! I camped in the general area and it was much easier. I can walk but am slow and find it painful, so couldn't cope with a larger festival but Larmer tree is just perfect.

weegiemum Thu 12-Jul-12 23:45:39

I'm so proud of myself I had to tell someone! I'm on holiday atm in the Outer Hebrides, the only sunny place in the country as far as I can tell! And while we've been up this time ( we lived there for 10 years before we moved to Glasgow) I've managed to walk on sand, sew up a hole in my trousers and paint on stones with the kids. I've also done some cooking and baking!!

I know it doesn't seem like much, but when you think that 6 months ago I couldn't walk unassisted, couldn't feed myself or wash myself, couldn't hold a pen (still can't really write) and had horrible vertigo the whole time and was constantly throwing up. I still have bad days/weeks and I still can't walk very far, but it does me good to look back and see how far I've come!

Now if only I could relearn how to do my bra up behind my back .....,

CMOTDibbler Fri 13-Jul-12 09:31:38

Fab news Weegie !
Doing your bra up behind your back is highly overrated imo, though I was delighted when I could do a bra up at all

NoHaudinMaWheest Fri 13-Jul-12 21:02:43

Weegie great news! I'm sure it was a man who invented bras that do up at the back!

hhhhhhh Fri 13-Jul-12 23:59:11

Message withdrawn at poster's request.

flowerflo Sat 14-Jul-12 08:13:17

Great news weegie. Hi flooded, nice to meet you. It took us a long time to decide to have children too but as soon as I was pregnant I never looked back smile I've coped with motherhood much more easily than everyone thought I would. Have spent lots of time researching and buying equipment to make the physical demands easier. Good luck xx

Rollersara Sat 14-Jul-12 11:06:47

Ahh, weegie, we go up that way often, just got back from Arran this year, which seems a bit wussy by comparison!

Carpal tunnel surgery is an interesting one for me as my hands are so screwed due to dystonia I didn't even know I had the syndrome until a specialist suggested tests when I was in for something else altogether. For me, surgery won't make anything much better, just stop it getting worse sad

Oh, and the reason I was seeing the specialist was to discuss the chances of DD inheriting my condition. They still can't tell, and won't be able to until she is walking, but as flowerflo said, motherhood hasn't been as hard as I expected, have lots of high tech and not so high tech aids to help...

hhhhhhh Sat 14-Jul-12 12:52:25

Message withdrawn at poster's request.

weegiemum Sun 15-Jul-12 07:24:03

Most of my stuff (I don't have much really) came through the rehab OT. I was given walking poles by a friend and theyve been a complete revelation to me!
Arran isn't wussy at all! We go to the outer Hebrides a lot as we used to live here and we still have our house here which we rent to tourists and just block off the weeks we want to come.
I don't envy those of you who have to worry about passing things on to your dc. I've been told that it's likely the susceptability to immunological diseases is inherited, the specific illnesses aren't. However I do have mild (at the moment) rheumatoid arthritis as well as the CIDP which both my Grans had, so I sometimes wonder about that, and my condition is related to MS, which my cousin has. It's a minefield!

flowerflo Sun 15-Jul-12 08:20:19

I got the standard stuff from OT (bath board, raised toilet seat, stair rails, bed raisers, walking stick). I also had my cot adapted by a charity called remap (it's fab- higher than normal with opening door sides). However I've worked out lots of things for myself and been a bit creative. Have tried out all baby equipment to find out what works best for me. I initially used the troll crib as its adjustable height with a drop down side and it can go next to my bed so I didn't need to get up in the night. I always had a Moses basket or baby bouncer on the sofa next to me so I didn't have to bend to the floor. I have a stokke xplory buggy - nice and high and sturdy enough to lean on to help me get up. I use the buggy in the house as I can't lift very well or walk around carrying dd very much. Have a stretchy wrap sling so my hands are free to hold the rails when I take her up and down stairs ( but only do this if no-one about to help). I tied scarves to the baby bouncer chair so it's like a sleigh so I can pull her around! When she was first born I practiced everything over and over again with my partner to work out what I could and couldn't do. It's amazing how much I can do although there are only certain places I would go to alone. I checked out all the baby changing facilities in local shops but many are too low for me but I can change her in her pram if I sit down. (have done this many times in the disabled loo!). I can cope very well at home but hate going to other peoples houses or baby groups as I need more help there. I'm coping as she becomes heavier too as I'm so used to handling her, we adapt together. I can't handle other babies in the same way as I'm not tuned in to their weight, shape, movements etc but with dd I'm fine. I think the way I pick her up is pretty unconventional but she's fine with it! I've just bought a few bits of equipment off eBay for when she starts walking - gonna try them all and see what's best. Can't bath her at all, but that's daddy's job!

Rollersara Sun 15-Jul-12 19:29:23

Whereabouts on the Outer Hebrides are you weegie? We've done the Uists, Lewis and Harris, definitely want to go back to Harris! Skye is my favourite island so far though!

For me, things have been research, hit and miss, and a very good OT. I have a bednest which has been excellent so I don't have to get up to get DD. An ipad and kindle have kept boredom at bay, and a sling for carrying DD up and downstairs has been vital (as has having two changing stations, one on each floor so I don't have to do that too often!). OT gave me a special bean bag cushion as I can't do many of the traditional breastfeeding holds. OT is also coming back when DD is a bit bigger to discuss how to handle a toddler from a wheelchair (suggestions welcome!).

As flowerflo says though, the most important thing has been practice, especially in carrying DD. And trial and error - a lovely friend lent me three slings/carriers to try so I could find the one that worked best for us (a Babybjorn).

Reenypip Sun 15-Jul-12 22:44:41

Hi rollersara, how do you currently get up and downstairs with your little one? You say you carry her in a sling/carrier?
My partner or who ever else does all the carrying for me, but if he can't or I have a try, I sat him on my lap, while I bum shuffled down each step.
My boy is 14 months, and has been able to climb up since about 9 months, which is a great help, rather than having to lift him up myself. By this I mean, he can get on the settee himself plus he can climb the stairs (with someone watching close behind), and he can also step onto my foot plates on my wheelchair so he is higher up to get on my lap.
Make sure there are baby gates on stairs, kitchen etc. because if your toddler speeds off and gets in area you can't, it's extremely difficult, especially when you tell them no and call them to you, they don't always listen.
I'm a first time mum too, so I'm constantly learning how to adapt.

Rollersara Mon 16-Jul-12 18:32:14

I use a BabyBjorn carrier, or shuffle down which I'll have to do more often as sheis getting heavy!

Do you have a way of carrying him in your wheelchair?

weegiemum Tue 17-Jul-12 16:20:07

We lived in Lewis for 2 years then Harris for 8.5 years. Dh was the GP in Tarbert. We kept our house there and rent it out and have our own holidays mainly there. We live in Glasgow now.

These 2 weeks just past were the first time I'd been there since my disability took hold at new year, and it actually worked out very well. With my new walking poles I was even able to paddle!!

You ever need any tips for Harris let me know!!

madhairday Wed 18-Jul-12 12:43:01

Hello, can I join in? Only just seen this, I come on here from time to time but there's very little traffic on here so good to see this.

<waves to weegie>

I have a progressive lung disease called bronchiectasis which is a sister disease to cystic fibrosis and has the same treatment. I've had it all my life but in the last few years I've had more lung damage from infections and so quality of life has gone down dramatically - no longer able to work (teacher) and just concentrate on getting through the day really, as many of you do. I get so cross when people tell me what I should be doing - thinking they're helping by giving me positive ideas but actually making me feel worse, thinking they must think I'm of no use and need to be more useful - seem to have come across a fair amount of this lately. 'Well, couldn't you join this committee/help out in school/tutor children etc? you have so much time on your hands!' Grrrrr!

OK mini rant there...obviously on my mind today!

I have two dc, an 11 year old dd who has dyspraxia, psoriasis and hearing loss so we're forever chasing appts with her bless her, and an 8 yr old ds.

Nice to meet you all.

weegiemum Wed 18-Jul-12 16:41:13

Hi MHD nice to 'see' you here.
Thanks for explaining your condition, I actually didn't know all that - sounds ghastly. I'm just out of hospital after my 2 days of treatment and totally exhausted as usual - luckily dh is working away this week and kids are with my parents, so I can chill!!

weegiemum Wed 18-Jul-12 16:47:07

I also realised that I've never said my dd2 (8) has a disability - perthes syndrome which is a hip problem. When she was 4 her right hip joint died off and crumbled. She was in a lot of pain and off her legs for about 2 years, but is now allowed to be active again. There's still a 50:50 chance she'll need a bone graft on her hip socket. I'm glad she's up and about but since the CIDP started for me, I'm missing pushing her major buggy - it would have given me a bit of stability!!

madhairday Fri 20-Jul-12 19:59:25

Oh weegie your poor dd, sounds so hard for her sad

How are you feeling today?

I'm feeling cross with dd's school as they haven't given her enough support with her dyspraxia. And cross with myself for not pushing more. Have had such a crap year with my lungs and not had the energy, but still cross with myself.

darksecret Fri 20-Jul-12 22:34:11

Hi everyone,
I'm new to the thread and hope there's room for one more. I have a beautiful eleven month old daughter and am in a wheelchair as a result of pelvic damage during the pregnancy. It's been a huge life adjustment. I have been reading through the posts here and am very encouraged by the supportive 'can do' attitude here. Weegie, we'd hoped to go on a holiday this year but decided it was just too complicated and expensive in the end, so massively impressed.
I'm also humbled by how courageous you all are. Thank you for sharing. You never know who you are helping.

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