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visual impaired?

(43 Posts)
l3mma Sat 18-Aug-12 17:57:43

any other paretns or parents to be with a visual impairement? would love to chat to others in a similar situation.
Lea x

radicalsubstitution Sun 19-Aug-12 19:55:20

Hi Lea,

I was diagnosed with Stargardts macular degeneration in 2010 and currently have VA of 6/60 in my left eye and 6/36 in my right.

I have a DS (nearly 6) and DD 2 1/2.

I wasn't diagnosed until my mid thirties, and sight loss has been pretty sudden (following second pregnancy). The whole family has had to cope with a sudden change of circumstances (including me giving up driving) which has not always been easy.

I still manage to work part-time as a Chemistry teacher - with lots of help (including a support worker) from Access to Work. It's not always easy, but I'm determined to keep going for as long as I can.

What's your situation like? Have you always been VI? x

megandraper Sun 19-Aug-12 19:58:15

Hi Lea, I have RP, about 2% of useful vision left, and 3 young DCs. What kind of VI do you have?

l3mma Sun 19-Aug-12 20:12:37

I have beyond advanced Keratoconus and a failed cornea transplant in one eye, other eye urgently needs one but I am refusing due to all the complications including developing a cataract in the other. I was registered legally blind March 2010 so still semi finding my feet (cane in hand and all) but don't let it stop me, doing a part time Masters degree in Addiction which I love.

Just getting frustrated with simple things like ultrasounds and how to be honest stupid the sonographers can be. The midwife was clueless but is slowly getting there thankfully.

x

l3mma Sun 19-Aug-12 20:13:36

I should add KC tends to affect 1 in 2-3thousand out of which 1 in 10 thousand get registered legally blind x

megandraper Sun 19-Aug-12 20:59:34

Haven't come across KC before. I am also legally blind. Don't have a cane (no room for it in hand when pushing double buggy...) but will be getting a guide dog at some point in the next few years, I think.

What was the problem with the sonographers and midwife?

l3mma Sun 19-Aug-12 21:40:05

I applied for a Guide Dog had a few assesments, rung them to say I am now pregnant got a lot of cr@p back from them, short outcome gotta get back when kid is 18 months old to see if Im still suitable, um my mobility needs will not vanish just cos I have a kid, they will change and alter.

We had a private scan at 6weeks all was wonderful

NHS one at 10weeks 5 days they refused to make things larger or move screen so I could see "something" I asked can you turn up noise so I can hear heartbeat hubby said I got given "dager eyes"

NHS at 13weeks 5 days was a lot better but still couldnt see anything

Private at 16weeks 6 days was awesome they gave us a free cd of 33 photos so I can run zoom text over the pics so I can see easier smile

Midwife wanted to refer me for a Social Worker cos evidently in her eyes disabled people shouldnt be parents!! she was rather baffled in the first few appointments but is slowly getting there.

I was only diagnosed with the KC in May 2009 so have had a very quick progression.

I intend to wear baby most the time so will in theory have space for cane although I am currently really bad at remembering it so who knows x

megandraper Mon 20-Aug-12 03:24:47

Few people without experience of low vision are good at dealing with it, I find. But it is hard for them to understand, I realise that. People think it's a matter of total blindness, or reasonable vision and don't realise the complexity of different levels of vision.

I think Guide Dogs have a general policy of not doing guide dog training with someone who is pregnant or has a very new baby because you need to devote a lot of attention to the dog training and maintain consistency of dog handling and routine. Although I know that they make exceptions, depending on individual circumstances. At the moment, I can't imagine how I'd handle kids, buggy and dog - wouldn't be a help for me, plus I find the buggy is a good mobility aid (similar to cane, I suppose, for feeling the texture/level of the ground in front of me). I'm intending to go for a dog when my youngest is school age, so applying about a couple of years before. I need all the kids to be able to walk reliably next to me.

Slings are great - used one a lot with DC1, though DC2 and DC3 were heavier and my stomach/back muscles weren't up to it.

I imagine a cane is also useful for letting people know that you have a visual impairment (which has its own pros and cons). Because my impairment's not obvious to people when I'm out and about, I think they are often annoyed/offended when I don't register their presence.

l3mma Mon 20-Aug-12 09:19:30

I understand why Guide Dogs have policies what I can't grasp is how rude and nasty they were to me though, I ended up tweeting their head office who had a word with them as initally when I rung them to say I am pregnant their words were "oh well we will cancel your application" n the phone put down on me very abruptly.

Yeah the cane has its uses people either move rapidly out the way, stand n dawdle then when I dont register their heals n they get a wacking do the "what are you blind" or occasionally people will offer me help.
x

megandraper Mon 20-Aug-12 13:24:40

That sounds unpleasant - I'm surprised they weren't helpful, as the people I've dealt with there have been really nice. But each region is probably different. They should have talked it through with you.

When are you due? Congratulations by the way!

l3mma Mon 20-Aug-12 14:28:44

due January 18th smile so quite a while away yet.

The whole process to date with Guide Dogs if honest has been a sham and series of incidents so this being the latest didn't suprise me.
x

megandraper Mon 20-Aug-12 20:45:23

what else went wrong?

wannaBe Mon 20-Aug-12 20:54:55

hello.

I am totally blind and have been since birth, and I have a 9 yo ds.

I already had a guide dog when he was born, and tbh using a dog and a buggy is IMO impossible unless you're prepared to drag a buggy behind you which I wasn't, so I carried DS in a sling until he was about 8 months old and then in a back carrier until he was two. Although as soon as he could walk he was allowed to, and I just gradually increased distances until he became used to it.

My visual impairment has never held me back - I held down a fulll time job as a finance manager until I had DS and I am now in the process of setting up my own business as a life coach.

Which branch of guide dogs have you had to deal with? Tbh I can understand why they may have such a policy as getting used to a first guide dog is a difficult process which takes up to a year really too establish that bond etc, and having a first baby is a bloody shock to the system, I wouldn't recommend taking on both at the same time.

megandraper Mon 20-Aug-12 20:58:24

Hi Wannabe.

Slight de-railing but I have a question - at what age did you find your child was able to walk safely alongside you while you were using your guide dog (and your child not holding your hand). i do realise it would vary for different children.

I am trying to visualise (not the best choice of word perhaps!) keeping track of my kids at the same time as using a guide dog...

wannaBe Mon 20-Aug-12 21:47:00

well, the way I did it was like this:

He held my hand when he initially started walking, and when he was walking well I attached reins to him with a wrist strap attached to the reins (to give him more room to move iyswim), although he still held my hand at his own insistance. Then when he was able to communicate I would let him go in an area where I knew he was safe i.e. the park, and he knew that if I told him stop he had to stop, and that if he didn't he would lose that freedom iyswim. I think the vitally important factor here is that I allowed him to walk as soon as he was able to, so walking just became a natural process for him iyswim.

Another thing which also went in my favour was the fact that I had a very well established guide dog - she was eight when I had ds so didn't need masses of my concentration iyswim, also I lived in an area which I knew extremely well.

megandraper Mon 20-Aug-12 22:12:57

yes, all very helpful. I have 3 DCs - when I get a dog (plan to get dog rather), the eldest will be about 7- 8 and the youngest 3- 4. It will be a big change for them. And me. (and DH).

wannaBe Mon 20-Aug-12 22:38:34

Yes it will bring big changes to you and your dc.

My ds grew up with my dog, but he was 3.5 when she retired and we had to adapt to having a new inexperienced dog together. But children learn quickly and my dogs have all (I am now on my 3rd dog since the second was retired early) learned to follow my ds i.e. in shops etc - it is a very useful skill for a guide dog to learn. lol.

megandraper Tue 21-Aug-12 20:14:04

that does sound useful, wannaBe!

one small question - when you travel by car, where does your dog go? In the boot? In the passenger footwell? Am wondering if we would have to have a bigger car.

Hi lea, Congratulations on your pregnancy!

i'm also registered blind (vision in best eye 6/60) I have a 6 yr old who has inherited my condition and is partially sighted and also has ASD. I have a very bad back (caused by years of poor posture for many years). And carpel tunnel problems in my hands.

I work full time, I have a PhD and find it easier to earn money to pay for stuff like a cleaner and childminder for the school run. (i.e. the stuff that I find difficult). I was a SAHM for 2 years and was really depressed as I effectively went from a high achiever to not coping with things everyone else took in their stride. I still get lots of time with dd and we are both happier now I'm working but things have got better now I'm in a flexible job and dd is older.

The bus service is none existent where I live so I'm not very independent. I'm working on that at the moment as DH is changing careers and will not be around at weekends much anymore which I will find VERY difficult. I stopped going out by myself when dd got too heavy/wiggly for my slings. I was a nightmare with pushchairs.... Dd has no danger sense and can bolt so its challenging to say the least.

megandraper Wed 22-Aug-12 07:45:31

That sounds tough Lola - it is really hard not having any public transport you can use. Does your local council offer any help? Are there any bus services for the disabled? There is one in my area, but they won't let me take under 5s on it (and all 3 of my kids are under 5!) so it's not much use to me. Would perhaps work for you though? Have you had an assessment from social services to see what help they can offer you and DD?

Glad your job is working out well.

wannaBe Wed 22-Aug-12 09:24:29

hello bh, the dog is trained to travel in the footwell in the front of the car, depending though on what kind of car I'm travelling in I will put him in the boot if that is appropriate.

megandraper Wed 22-Aug-12 12:14:52

Is the footwell a bit of a squash for long journeys, or is the dog happy for long distances?

ImPeppaPigOink Sun 26-Aug-12 15:17:17

Hello

I'm currently Partially sighted (read second line down on the chart) I'm on the brink of losing my sight fully. As the damage to my Optic Disk and Nerve is severe.
I've been registered Partially sighted since May 2011.

I have DD who is 4 and I'm 17weeks pregnant (Due 3/2/13).

Hi Peppa (got that blummin theme tune in my head now!)

I can't imagine how hard it is to have full sight and lose it (I've always been at best partially sighted). Congratulations on your pregnancy. Hope you have your 4yr old prepped to help when the baby comes.

Ooops. Shouldn't be on mn. I've lost dd in a sandpit blush

mummy and daughter days out are tricky but dh has chosen to work up to 4 weekends out of 6 angry so we have to get better at going solo.

Bedhop - there is some transport but it's unreliable and takes over an hour to do the 10 min car journey to the shops sad and dd has ASD and is not good at waiting. So i gave up trying a few years ago, But now it's that or stay home so she's got to learn to cope and I've got her some gadgets to keep her amused. When we moved to the area we picked a house with a good bus service but in between putting the offer in on the house and us moving the bus service was taken off sad

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