This area is not a substitute for expert advice. Whilst many Mumsnetters have a specialist knowledge of disability, if they post here they are posting as members, not experts. We would always recommend that posters seek advice from properly qualified medical professionals on any health issues that concern them.

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

megandraper Tue 28-Aug-12 23:19:54

how frustrating - I know (from experience) how dispiriting it is to have a ridiculously long and difficult public transport journey to cover a really short car journey. Does your council offer any disability transport?

I'm not aware of any and to be honest I'd feel a fraud it I tried to access it. I can use busses. It's just a royal pain in the bottom. (and I'm used to being chauffeured around grin) I get hight rate mobility so that in theory covers taxis for the days I (or dd) can't cope with the bus or the places we need to go which aren't on a bus route (like her dancing class)

ImPeppaPigOink Sat 01-Sep-12 00:10:33

Lola It is hard to have full sight then lose it. But I suppose as I can't get it back I need to move on.

CAn I ask how do you manage to take your DD out? I have not left the house alone for 2.6years through my vision as I struggle with the roads etc and as DD is too young to know about road safety it is safer to stay in which I hate.

I'm pleased I have found this thread as it seems you all lead normal lives. I would love to be able to go out with DD and not Dp even though he is great, I had to quit work but mainly through all of the admissions to hospital through my brain disorder.

It's a bit different for me as I've always had rubbish sight and am fairly confident about being out on my own. I lost a lot of confidence once I had dd though. I was terrified about crossing roads and have only started using a symbol cane since I had to take her out. When I first had her I lived in London, 200 miles from family and friends with dc's and DH worked long hours. I HAD to do things on my own. But we moved up north while she was a baby and I have support now. I still sometimes carry dd across roads so I can really concentrate on the traffic and run if I think I need to. She's 6 so I really have to stop doing this! (she's going to get eaten alive if the girls in her class see us)blush

But if I'm going out with dd on my own I will only go to places I know really well. Particularly I have to know where the nearest toilet is at any given moment as dd only ever gives me 30 seconds notice!

If its a busy place dd HAS to hold my hand all the time. Otherwise I can't concentrate on finding my way around because I'm worried about where she is. We had a phase where this was a problem (and suspect we are heading for another one) but that's the condition of us being out together and if she won't I call a taxi and we go home.

I had some mobility training when I moved to help me get to know my new area and routes that I could take a buggy down safely. (but until dd was 3 I mainly used a selection of slings)

Now I only really panic if I have to take one of dd's friends anywhere, especially if I have to cross a road, the responsibility of keeping your own child safe is pretty daunting but it's nothing compared to having responsibility for someone else's!

I'm glad this thread is helping you. I talked to wannabe when I was either pregnant or dd was tiny, can't remember, but i remember thinking how reassuring it was that she was coping so well.

megandraper Tue 04-Sep-12 11:13:40

Do you all feel you are stricter with your child(ren) because of your visual impairment?

I am very strict with mine about road safety. Went to the park yesterday - I had buggy with baby, and walked on the edge of the pavemnt nearest the road, with DS1 (age 4) on his scooter nearest the wall, and DS2 (age 3) on his scooter sandwiched between us.

They have to only scoot at walking speed (no getting ahead of me) and I take the scooter away if they don't do this.

Sometimes I feel a bit mean at being so strict. But actually, I don't understand why parents with perfect sight let their small children scoot on ahead. Lots of driveways crossing the pavement - not every driver is looking out for small scooter-riders.

Oh yes. I couldn't cope with taking dd out on her scooter! It's for garden use only. (although she is also VI so she needs extra supervision grin

I must look like a complete helicopter parent to everyone. I'm always hovering behind her. (so I don't lose her!). And she has to stick to me like glue when we are out or I feet shouty and take her home. But it's that or not go out as far as I am concerned

Btw, I'm having an ongoing row with my parents (who do a huge whack of childcare) about whether it is reasonable to let dd ride a bike on the road. They say because they let me I should let her but there is no way! She has no awareness of what's around her and the traffic situation had changed significantly since I was young. And I had many many MANY crashes and looking back its amazing I wasn't seriously hurt!

They say I am independent because I was expected to function without help as a child. But I had a very unhappy childhood because of that. The eye condition I have runs in the family but I have much worse sight than the rest of them but their attitude was that I'd my mum could do it I should be able to do it. Dd's sight is better than mine and DM accuses me of not giving her enough freedom.

Sorry for rant smile

megandraper Wed 05-Sep-12 14:16:37

Much harder if your DD is visually impaired as well, Lola, I agree.

YY to feeling like a helicopter parent in certain situations. I find it difficult to chat to other parents in playgrounds etc., as I need all my attention on keeping track of my DCs. I tend to dress them in similar clothes and bright colours to help with this.

While your DD is young, it is your (and your DP's) decision what she should/shouldn't be allowed to do, and your parents shouldn't be pushing you to allow things you feel are unsafe. You are in the best place to judge. I sometimes have the opposite problem - my DM (who has normal sight) sometimes wants me NOT to do things which she thinks are unsafe. She doesn't realise that I am making judgements about what is and is not safe every second of every day, and that I'm best placed to decide this. It is all done with the best possible intentions though - as with your parents by the sound of it. What does your DP think?

DH keeps his head down grin

I don't think he's ever really come to terms with dd having the family eye condition (or ASD) and he was brought up in a family where DC weren't valued until they could bring in a wage sad

megandraper Fri 07-Sep-12 11:45:30

What is your eye condition, Lola (if you don't mind me asking)?

It's complicated grin and it's very rare so i'm worried it would identify me very easily If I named the syndrome (and I'm very lazy about thinking up new usernames) but our common symptoms are ptosis (drooping of eyelids, nystagmus like uncontrolled eye movement and what our brains seem to do is ignore the input from one of our eyes (so we have monocular vision, and a very limited field of vision, but we found out last night dd can see 3d with 3d tv's which I can't! ) I was properly messed about with by the doctors when I was a kid and although I can't prove anything I don't think it's a coincidence I'm registered blind when my family members who didn't have aggressive surgical intervention aren't.

megandraper Tue 11-Sep-12 11:50:27

Fair enough Lola. Sorry about your experience with doctors, that sounds horrible.

Just having to do headlice combing with DC1 who has started school. Have deputed DH to do it, as I 'm not sure I'd see the lice. What do you all do about this?

Smother her in chemicals every time she starts scratching her head grin. She has a complete melt down (ASD sensory issues about anything 'on' her) but I can't see them, nor can my mum and DH is always working/studying/volunteering so he's never there to help.

I'm a bit worried this week as my head is itching but I don't know if it is because of something real or paranoia!

megandraper Tue 11-Sep-12 13:51:44

I have just had a separate thread in chat about headlice! Everyone there recommended the NittyGritty comb so I have bought one of those. I think I am going to do a preventative weekly comb of everyone!

(and yes, it is making me itchy thinking about it too...)

Thanks for the tip! Do you need to be able to see the lice to use the comb??

megandraper Sun 16-Sep-12 06:31:51

I don't think you need to be able to see the lice to use the comb (i.e. it will get them out regardless, and you can just section the hair and do it methodically) - but you might not know if anything has come out. I don't know if I would be able to see them or not (we haven't actually got them yet). You are supposed to wipe the comb on tissue after every stroke. Would your DD be able to see/tell you if anything had come out? I think I am going to have to start doing it myself, as DH is not actually doing it...

On advice from a teacher at school, I have also bought the Vosene spray-on, leave-in conditioner with tea-tree lice repellent. Worth a try!

I use a shampoo that is supposed to repel lice. No idea if it works or not though. I do feel that we are doing the Full Marks treatment less but that could just be that she shampoo makes me more relaxed about treating her. smile

Dd probably won't be able to see the lice either.... But I will look out for comb anyway.

wol1968 Fri 30-Nov-12 14:10:56

If any of you have kids of school age, how do you ensure you're kept up to date with all the bumf that comes back from the school? I have a registered blind friend who has terrible trouble keeping up with costume days, no-uniform days, outings etc. Obviously she can't use Parentmail because she can't see to use it (and she's not very tech-savvy anyway) so she has to rely on a husband who works irregular hours, or kids (one with mild SN, the other just a bit too young to be reliable) or friends/neighbours who may or may not be there.

The office has been supremely unhelpful to her (they can't ring up about everything, they couldn't possibly print the letters off in large print, hasn't she got friends who'll let her know...) but I'm sure there's something legal about her needing all this stuff in a format she can use. What would you advise?

Personally I find it a nightmare and I can usually read normal print (If I can find the news letters) missed non uniform day a few weeks ago, dd was mortified sad school are extremely unhelpful. They print everything as small as possible to save paper. My childminder is usually pretty good at telling me what's going on (but it's obviously not a foolproof system)

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now