General Disabled Parents Chat

[weegiemum]

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!!

Hello! I am deaf (small amount of hearing in one ear) and have three hearing DDs aged 6 (well, she is 6 on Monday) 3 and 7mths. My hearing loss is sensori-neural so although I can often hear sound, I find it hard to distinguish words.

I also have some brain damage from a vaccine reaction which causes problems with the connections between the two sides of my brain which mean I am uncoordinated, have balance problems and a lopsided smile!

My DD1 is finding having to stop what she is doing and face me while talking annoying at the moment, both of the older ones get really cross when we are out because I can't understand speech while there is car noise going on!

Hi there good idea for a thread, just short hello post as in pain typing. Will return!

Can I join you all? I am a mum to a DS (6) and a DD (2). Two years ago I was diagnosed with a form of juvenile macular degeneration and I am now registered as partially sighted. My peripheral vision is perfectly ok, but central vision is non-existent. This means I can run for the bus but am pretty sure I must get 'funny looks' when I produce my disabled bus pass (luckily I can't see their faces).

Unfortunately, the diagnosis came at the same time that DD was diagnosed with a large hole in the heart. 2010 was not a good year for us.

Anyway, two years on and DD's heart has been well and truly fixed thanks to GOSH (although she now has a serious 'attitutude' that wasn't there before) and I am back at work as a Chemistry teacher. I get a lot of support through Access to Work who funded lots of equipment as well as a support worker.

Hi Radical, I'm also VI and also a chemist

Just wanted to update those I've talked to about my carpel tunnel surgery. It's booked for a week tomorrow. (if I don't chicken out!)

Hey Lola, that's the same day as me! Not in one of the Oxford hospitals are you!?

Good luck with the surgery Lola.

Good luck Lola - is it at the Nuffield ? You really won't regret it.

I'm in Yorkshire. Its all getting a bit scary but every time I think about it my hand hurts even more so u know I have to get it sorted.... Will check in with you afterwards (when I can use my hand again)

I'm at the Nuffield CMOTDibbler, they've been very good in the past at the Centre for Enablement (hate the name though!), hoping the hand clinic is as good ...

Good luck lola!

can I join till April2011 i was single mum to 4 children , youngest has sn himself had eds 3 but no major issues and ended up with back pain and problems with my bladder and in a&E but vy that time it was to late and most the nerves in my spine had been sawn through so other than a toe and feeling pain no movement and no recovery been told

So now am a full time wheelchair user and still a single mum after some really shitty months life is now good and moved into adapted house one week before xmas which helps a lot

So great to have so many mums here, even though so many have such severe problems!

I'm back in hospital tomorrow for my IV treatment which I need as I can't walk without support since the weekend.

My eldest child (dd1) starts high school tomorrow (it's S1 in Scotland, y7 in England) and I feel ancient! But the ghastly neurological pain kind of keeps my mind off it!

My great big girl got on fine today, got the bus no problem and we picked her up and had a good chat after (dh's day off!). But I ended up staying in the car when we picked her up (we were held up 10 mins so she went to the park with her friends). Cos her friends all know about my disability but I let dh go and get her, cos I don't want to embarass her .

She shouldn't be embarrassed about having a disabled mum. But it's not easy when you're 12!

Update on CT surgery. Was very icky thing to have done but so far (just over 24h). The pain is surprisingly manageable compared to the pain of the flare ups!

How are you doing Roller? Did you have keyhole or open surgery(like me) ?

Hello Lola, was thinking of you!

I'm doing ok, pain is manageable and hoping to take the bandages off today! More movement than I thought I'd have too (like typing!).

I think I had open surgery but I was under a general anaesthetic so I'm not sure!

You had a general! They refused to give me one (did my best not to watch but all the tapping and tugging grossed me out big time). Probably for the best though as generals make me very very sick. The whole op took only 7 mins by the way!

The pain is only really bad when I knock something over and catch it with my bad hand without thinking. I'm extremely clumsy so this has happened half a dozen times today already.

I'm also finding that I'm holding it still and in a fist. It's getting stiff so I know I'm doing bad but I'm freaked out by the tugging feeling in my stitches when I move my fingers.

Glad to hear you are doing well. How does your hand feel when you type? Does it feel like they have helped the original problem?

I had to have a general as I couldn't keep my hands still enough for the ecamination, let alone surgery! It was quite unpleasant as they had to put the injection and drip in my feet, which are still quite bruised.

The numbness I had pre surgery has almost gone though, before I was waking up a few times a night with horrible pins and needles but that has completely gone.

Same as you with the clumsiness though, have hurt myself a few time that way. Took the bandages off yesterday to change the dressing and the left looks gruesome but healing but the right the wound is gaping a bit. Might go to the GP tomorrow.

When do you get your stitches out?

You had both done! I feel a complete baby now..... Only had my right done.

Have you just got dressings on the palm of your hands? I feel naked without my bandage and it hurts now its not supported. I've had it in a splint and then a sling trying to get comfortable.

I've still got the throbbing and numbness on my index finger that I had before op. hope that's not a sign that it hasn't worked.....

Ha,I put the bandages back on! The dressings didn't seem at all secure and offered no support so I thought it was better to put them back! I've had a splint on yesterday too !

I've got pins and needles in two fingers now

Just popping in to say hi!
I'm feeling pretty crappy just now, it's just my head not coping very well with the permanence of my condition. I'm lonely at home now the children have gone back to school! We moved house 3 months ago as I couldn't cope in the old house and I miss my friendly neighbours, round here everyone works full time.
I'm back at work myself this week - I teach young mums basic literacy and numeracy, and I'm getting a whole new class starting on Tuesday. I'm looking forward to it, though getting there is a bit of achallenge. I think I'll be more positive once I'm back at work.

Hi

I was wondering if any of you might be prepared to offer me some advice / support? As a new "Mum to be" I guess a lot of my concerns are related to becoming a Mum. I am sure these feelings of anxiety have been experienced by many of you and I know that they will diminish once I give birth and am getting on with being a Mum. However, doing it alone does make it scarier. In addition I am disabled and the combination of theses three sources of anxiety are making me start to feel more anxious about having my baby. Please don't misunderstand me, this baby is VERY wanted. I fought long hard medical battles to get pregnant including undergoing 2 lots of surgery and according to the doctors I am risking my life by being pregnant. But I know it will all be worth it. I have always wanted a baby but medically have been told to wait for this operation or that recovery and in the end I had to go against them as I felt it was now or never if I was to get pregnant. Even though I do not currently have a partner I decided I would not let that stop me from going for my dream.

Disability wise the situation is complex - but briefly - I have rods in my back from my neck to my hips. The surgery to insert these did not go well and I was left paraplegic (incomplete T6/7). I have an underlying disorder of my connective tissue (Ehlers Danlos Syndrome - EDS) so my joints get injured and dislocate more easily. The combination of the spinal cord damage and EDS led to my large bowel stopping working so I had to have an ileostomy (bowel empties into a bag on my tummy). When they did this surgery I went into intestinal failure with my stomach and small bowel becoming problematic. As a result I spent 7 months in hospital and now have a line which goes through my chest into my heart - I have spent the last 2 years setting up drips at home - this gives me extra nutrition (TPN) and extra fluids. Encephalitis after the spinal surgery led to my pituitary gland being damaged so I am steroid dependent and worst of all it damaged the sleep centre of my brain so I have a sleep disorder similar to narcolepsy, (I get warning I need to sleep and I take drugs to help control it - but it is still the biggest disability to me).

Although I have some support and help through carers, I am still worried about being a Mum with so many medical challenges. However, I am bright, I was a primary school teacher and a Paralympic swimmer (before my medical problems escalated), so I know that with determination anything can be achieved.

Do any of you have any advice regarding using a wheelchair and - cots, bathing, changing tables, carrying baby, travelling round?

Also any suggestions on what I can do now to make my life easier for when the baby is born?

Many thanks, Fi

PS Hi and best wishes to all of you Mum's and Mum's to be especially those with additional challenges!

Hi Fi, you are incredibly brave having a baby with these challenges! I'm slightly in awe. My disability (CIDP) only started about 9 months ago and my children are all at school so I can't really advise you much (I'm very good on the subject of pre-teen tantrums!!) but there are several folks here who do know loads about adapting. It's nice to meet you and I wish you all the best for your pregnancy aand beyond.....

Hi Weegie Mum

Thank you for your lovely reply. I don't think I am brave, stubborn maybe?! I just truly believe that I can offer a child a good quality of life and I think if I were to let things like my medical conditions stop me from following my dreams, it would be like giving up. Medicine is developing all the time and maybe they will resolve some of my medical problems in the not too distant future. If I had not tried for a child now and I waited for things to change, how hard would it be to be lots better but it to be too late to try? My biggest concern was that I had to make sure that I knew I could look after and support a new life (even if my medical condition did not change). This has taken a lot of soul searching, looking at finances, support I have and could bring in if needed. Children need stability and to be able to be children and I am anxious that my child is never a "young carer" or that they feel they missed out by having me as a Mum. When I was Primary School teacher I managed to achieve this to such a point that the kids actually thought it would be cool to be in a wheelchair and they were proud to have had the chance to try sports that other teachers did not do with them. I took my kids out on the playing field and with a special motorbike attachment to my chair I was able to move round the field with them teaching them basic skills in everything from cricket to hurdling. A lot of people have expressed concerns about my being pregnant and having a child. But this seems to be the story of my life. People doubt you because you are disabled and you almost have to be better than just good for them to accept that actually you can do something and do it well!

Thank you for taking the time to reply and good luck to you with your family.

Very best wishes, Fi

Mumonwheels, you sound amazing and will be a great mum. When is your baby due? My disability is very different to yours, but I wanted to reassure you that you will be fine and will adapt with your child. My dd is 7 months old and I have coped much better than people thought I would. I can't handle other children and babies, but me and my dd have grown together. My problems are with strength and stability (I have a muscle wasting disease) but I have found equipment that helps and developed ways of handling my baby. I would highly recommend the charity remap who adapted a cot to meet my needs. I use a sling sometimes to carry my baby so imagine this would be useful for carrying a baby in your wheelchair. I never used a changing table, it was easier for me to use the bed or the floor (less lifting). I had a bedside crib initially which meant I could see to her independently in the night. Little things like having a moses basket or bouncy chair on the sofa in the early days meant i didnt have to move too far. I could waffle on all day about what worked for me, but what I've learnt is that there is often a solution, it just sometimes takes trial and error to find it!. Try out as many bits of equipment as you can (I find the expensive things often suit me the best typically!)

Hello mumonwheels (and everyone else!), congratulations and I hope your pregnancy is going well!

I don't know where you are in the country but I have found some very good support services in my area, particularly a specialist OT who came round my house with a pretend baby when I was pregnant so I could try a range of tools and techniques for looking after the real thing! I am in the South of England.

Unfortunately for me it has been largely trial and error so what worked for me may not work for you, but as flowerflo mentioned bedside cribs are great, if expensive (I had this one, which is great!). Slings have also been my friend, especially the BabyBjorn which I use when I'm on crutches. I haven't been out in my wheelchair on my own with DD I'm afraid, it was too much of a challenge. However, the OT I mentioned said that she is aware of something Remap made that was a kind of bicycle seat that goes on your lap with a seatbelt for the baby. Certainly get in touch with Remap as soon as you can.

I did all the changing on the floor as well, and had several changing stations around the house which makes things much easier. I also second what flowerflo said about you and baby growing together. My mum was looking after me and DD recently after I had surgery and was really worried about carrying her downstairs. She was surprised to find that DD (who is naturally lively and a wriggler!) goes very still and holds on tight to go up and downstairs, somehow she has understood she needs to do this when mummy (or grandma) is carrying her.

Good luck!

Hi Flowerflo, thank you for your great reply. My baby is due on the 20th of January next year. I am excited as I have my 20 week scan tomorrow morning. It seems to have taken forever to come round!

It seems amazing your child seems to know to sit still for you - was that right from the start?

I will definitely get in touch with REMAP. I am hoping to be able use a sling to carry the baby a lot of the time but I am a little worried how much the weight might pull on my back and shoulders. Can you tell me what you found worked for bathing your baby? What other equipment did you find helpful? I know different things work for different people and although I do not have a muscle wasting disease my joints are quite weak from the connective tissue disorder and a joint condition which affects my hands (psoriatic arthropathy).

How old is your child now? Did you face any problems with other's attitudes with people thinking you should not have had a child?

Thank you for taking the time to reply.

Very best wishes,

Fiona