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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!!

flowerflo Sun 11-Aug-13 20:04:20

Hi Lauz8710. I have a muscle wasting disease too, which mostly affects my core muscles, legs and breathing. My little girl is 18 months. I was able to take her out on my own before, but now she's mobile it's getting more difficult. I can't pick her up from the floor or run after her so I need someone with me to go out most of the time. I had an awful situation in a car park the other day. She wouldn't get in the buggy so we both ended up having to sit on the floor until her tantrum was over! People looked at me very strangely! She's very independent and climbs in/out of buggy, high chair etc, but she's developing her free will at the moment and pushing the boundaries! I have to make everything into a game so she cooperates with me smile

lauz8710 Fri 09-Aug-13 16:50:23

Hi everyone, i have an un diagnosed form of Congenital Myopothy, I can only walk short disatances and have weak arms causing problems with simple things like brushing hair, teeth ect, I have a gorgeous little boy whose 2 and a half but because of my condition I can't take him out on my own much which is really frustrating, is there anyoneone with a similar condition out there? smile

Btw I have dd(9), who also has dcd and ds(6).

Hello, another "invisible" disability here - psoriatic arthritis doesnt look invisible to me when I'm all swollen, but other people seem to think I'm overdramatising it

Have been struggling carrying on as normal as possible for a year since I was diagnosed, housework is never done and DH is struggling being carer/working full time, so am determined to do anything I can to "help" it.

Oo btw, mum of two boys, 16m and 2.10 smile

Hi everyone, great to read the posts (manged about half atm). I suffer with epilepsy and DCD(dyspraxia).
The main problems I have as well as 'not looking disabled', are that my memory is really bad, to the extent that I can forget what someone has said the second they stop talking. I also find it hard to do things in the right order, makes cooking and housework complicated! People who don't have the condition can not seem to understand that I do actualy listen to what they r saying just can't always understand what they r saying even the most basic things like make me a cup of tea. I also spend half my time walking around the house trying to remember where I put things and what I came in to get!! hmm
I also find it hard to 'get to the point' and to know when to stop talking so sorry my posts will probably be very long winded.

Secretswitch Wed 24-Jul-13 21:22:52

Hi, I'm a mum of three. I have a prosthetic leg and hip replacement. I also have a seizure disorder,
I just want to cry right now. There is a thread in AIBU about a woman who pulled a customer up on her attitude towards disabled people. I am also sad and hurt by the comments being made by other posters, things like "people have to stop being overly sensitive about disability"
I just don't know how not to be sensitive since I AM DISABLED...
I am sorry if I posted in the wrong place. My heart just hurts..

newmummynow Wed 24-Jul-13 19:08:55

hi im mum to my 1 month old son and my disability is that I had a brain tumour when I as 11. My partner is disabled to he was hit by a car when he was 4 and can only use his left side. We've found these first weeks hard with child services and are hoping it will get better sometime soon.
grin)

gallifrey Fri 19-Jul-13 15:47:29

I believe they are introducing free nursery placements for 2 year olds for parents that receive certain benefits ESA being one of them. worth having a look in to.
I don't qualify because my ESA is contribution based sad

Reenypip Fri 19-Jul-13 10:51:46

Hello :-) I've posted before further down and on different topics.
I'll re-introduce myself briefly.
I'm now 27 and have a 10 week old baby girl and a 2 year old boy. I'm a wheelchair user and have multiple chronic health problems (wont list them all)....I use a wheelchair because I've had past 3 burst fractured vertebrae, both fractured feet, and damage (incomplete) to my spinal cord and nerves, in an accident.
I have a blog which I occasionally update
rhiangregory.wordpress.com
www.rhiangregory.eu

I made a Facebook group a while ago called disabled parents unite.
It's a private / request to join group. Feel free to search for it and ill add you in.

andreaglamite Fri 19-Jul-13 08:16:09

I am disabled mum with Narcolepsy and Cataplexy.
My son who, s 6 has special needs.
Trying to get a diagnosis and the correct help in school has become unbearable I try not too worry or take things personally but its so hard especially as I dont no whats wrong with him he went on a school trip and gave away his biscuits well he gave everyone in the class one I got upset with the school for letting him im not a bad person I just worry about him.
Sometimes I feel like nobody understands how hard it is I wish there was more support because most of the time its other people's lack of understanding that makes life hard more than the disability itself.

Reenypip Tue 09-Jul-13 11:38:56
gallifrey Fri 05-Apr-13 13:43:15

fizzbizz yes I am in the same situation as you. I have a 9 year old daughter and a 2 year old daughter. I am pretty much on my own with the little one all day. I find it really hard to go out on my own with her and either have to wait for dh to get in from work or get my other daughter to come and run round after the toddler. I have GBS and fibromyalgia.

Fizzbizz Fri 05-Apr-13 12:40:08

I have a very active two yr old boy. My mobilty is greatly reduced due to Multiple Sclerosis which is a degenerative disease. My husband works full time which means I mind our son. I cannot leave the house with him on my own. I don't get any help with childcare. Is there anyone in a similar situation?

flowerflo Fri 22-Mar-13 20:39:42

Mumonwheels - just wondered how you are getting on with your baby? I always meant to come back to this thread but don't use mumsnet very often. If you are still using mumsnet I'd love to hear how you are xxx

It sounds like you are in the best place then, I have always found the NHS a mixed blessing. The only time I need much care is when they've tried to help.... I believe I'm only blind because if the treatment I had on the NHS as a child (but there are no records so it's hard to know for sure)

weegiemum Sun 30-Sep-12 14:08:56

It's the paying for healthcare that prevents us moving. I get a treatment once a month at a cost of about £8000 and we'd never get insurance. Also, the one good thing is that I've got an excellent neurologist and our local hospital is on of the top places for treatment in the uk, if not the world. I'm very, very grateful for the NHS!

:-( I've vetoed moves to the US and Canada. Canada was a pipe dream but Dh had a job offer the US (when little Lola was 2) and I made him turn it down (well I said I couldn't go with him) I don't think he will ever really stop resenting that, but he has stopped me from having my dream too (not that itstit for tat, we just didn't have the same life plan) . Staying together has meant neither one of us can be truly happy I think.

The worst of it is I lived in the US before I met Dh so he feels the injustice, but I was a student living in a dorm on a big campus, with everything I needed provided, not a mum to a disabled child living in the suburbs (with a dh working 80h weeks!) with no job or transport...... Or childcare..... And paying for health care.....

weegiemum Sun 30-Sep-12 10:25:09

Aw thanks Lola. I think that it's settling in to my mind now that this is not only lifelong but slowly degenerative. We had always planned to go and work in Latin America, it was our dream. But it's not to be, and it's hard to let the dream die. Dh has been very depressed because of this. I feel like I'm hurting him by being disabled.

{{{hug}}} I know exactly how that feels. Dh is making some choices at the moment which would be fine if I wasn't a physical wreck. I feel so useless because there is so much stuff I can't do anymore, I used to have hobbies, and a social life! Now I have health care routines and hospital appointments.

weegiemum Sun 30-Sep-12 09:09:56

I just came on to whinge. I'm feeling terribly down about my disability right now. I miss the things I can't do anymore. I feel such a burden on my lovely dh and family. I hate living with this. I hate being pleased that I managed to fond a nice walking stick. I just want normality, but it's not ever coming back. Just feel very hopeless and sad.

Rollersara Thu 27-Sep-12 20:58:24

Don't know! Was advised on what to do until the stitches were taken out, after that it was "take it easy", and that was it! So I guess use it, but don't overdo it (which is what I think I've done!).

It seems I can't spell physio today grin

Gp was no help for me, just told me to wait to talk to specialist. I missed a call about pysio today whilst having a migraine. I hope that will be helpful (although I have encountered 2 brands of physio from my hospital, hand on (helpful) and just lots of talking (if only talking about it could take away the pain! It's pysio not counselling ffs!!)

The thing that worries me most is I don't know if I should be resting hand or using it? What were you advised to do?

Rollersara Thu 27-Sep-12 19:40:52

Sorry to hear that Lola, sounds like the underlying problem (pins and needles sounds like carpal tunnel syndrome) hasn't been fixed at all. Mine is better in that sense, just the surgery has caused more problems. I'm on maternity leave, but there is no way I would be able to manage either the driving or the typing my job entails at the moment. I was told to expect to be back at work probably after 2 weeks, 4 weeks at most sad

Have you seen your GP? Am thinking I need to...

My hand is very weak and over sensitive. I can't lift anything heavier than a cup, I can grip or squeeze at all sad and I have a very physical job which I'm really not able to do 6 weeks on..... I have pain in my wrist now as well as the original pain in my fingers and my fingers go dead during the night, I'm waking regularly with pins and needles. I don't know if I should be resting it still or trying to get some strength back,

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