Anyone fancy a support/chat thread for parents of blind/VI children?

[mackerella]

Just that, really! DS is 2.3 and has a severe VI, as well as another (medical) condition that requires a lot of hospital treatment. We've really struggled to find other people in a similar position who can share advice and experiences. I know from lurking on MNSN that there are a few other parents out there who have VI/blind DCs, so wondered if you fancied a place to get together and chat?

great idea mackarella dd3 is almost 7 and has a vi as part of a wider genetic syndrome. My biggest bugbear is the length of time it always takes at the eye unit, two and half hours last week, should have taken a packed lunch

Don't know if we will fit in on this thread DS now 14 is deafblind and complex needs. Due to his dual loss he does not fit completely in the deaf world or VI world but I am interested in any advice.

hi 2old, my dd3 has a HI too, she signs which can be interesting with a child with a VI and poor motor control

Hi Ninja that is interesting DS4 uses on body sign language (Canaan Barrie) with some success with those who know him.
I do worry though how isolated, he is fortunately very placid or as some professionals say passive!!

Hello ninja and 2old - it's lovely to chat to some other parents of children with VI!

2old (it feels a bit rude to call you that!) - of course you're welcome here. I'm sure I've got lots to learn from you both because my DS is only 2 and I feel we're still at the beginning of our VI journey. He is "just" visually impaired (in that it is caused by a straightforward eye condition and as far as we know he has no other special needs) but he also has a serious medical condition that requires a lot of hospital treatment. One of the things that has surprised me so far is how much effect his VI has had on his global development. We'd anticipated difficulties with mobility and so on, but we're finding that it's affecting everything else too (speech, social understanding, general maturity...) It wasn't that obvious when he was a baby but now he's a toddler, his difference from his peers is becoming really marked Still, his VI teacher says this is normal for children with his level of visual impairment and that he's making ok progress when that is taken into account, so I guess I should stop worrying!

Hello

I have two children with VI, a ds and a dd. My ds is 13 and he also has severe autism and severe learning difficulties. My dd(age 10) has only the VI. They both have statements and ds goes to special school. The VI affects them differently, really for ds it has pushed him further into his own world as he is unable to learn stuff like PECS or signing as he can't see. He is non verbal and therefore communication is pretty much impossible for him. He refuses to wear glasses which does not help. My dd goes to mainstream school and it mainly affects her academic work, she is quite brainy but the VI stuff does hold her back as she finds tests really hard. She has modified papers and extra time but still gets exhausted!

It is good to know there are others on here with VI

mackerella I am It is a lot more polite than some of my names in RL

Hello eggandcress

Bee has a visual impairment - a visual field cut and refractive error (her vision is 20:2000 uncorrected).

She does see well, all things considered, but as she gets older, we are noticing that she is having more trouble (as the visual demands put on children as they progress through school are greater and greater).

We did start O&M training with her when she was 3, but she HATED the cane, and frankly has adapted well without it. Her first (tiny) white cane lives in the front closet now.

I look forward to hearing from others who have walked this road before us, and sharing what we have learned as well. I am finding that the vision itinerant teachers seem more comfortable with blind children than those who are partially sighted...

oooh lovely, there are quite a few of us, hello

2old, dd3 is the same, only understood by those who know her, she has a fab new salt finally who seems to have got to the bottom of her speech issues so hoping she can learn more consonant sounds and with the signing we'll get some better communication going, it's going to take some time!

makerella, I think it's impossible to stop worrying is your ds in preschool yet? We found that helped with dd3 to a certain extent.

eggandcress, dd3 loves her glasses, hearing aids are very hit and miss, it's hard when she won't wear them as she misses so much, it's not easy is it?!

beemom, that must be a very small cane, how sweet

We stopped trying with glasses when ds was 4.5. Now he doesn't even have to go to the hospital for check-ups as he was very difficult to test. It was a relief especially after he bit the opthamologist when she tried to put the drops in, this was despite me and three nurses holding his limbs!
We still go to the hospital for dd but I always ensure the appointments are when he is at school!

Hello all,

I have a 9mo DD who is just (last two weeks) diagnosed with retinal dystrophy. We're not sure what type yet but we've already been advised that there is no medical intervention available so we're trying to digest that information and get on with things.

So far we don't think she has any related issues but we'll have to wait and see I guess. In the meantime we have started to get in contact with School for the Blind, national centre for the blind etc to see how we can support her. On the bright side she's already very physical and fearless. She rolls rather than crawls because I think she doesn't see things to reach for. And weaning is proving to be a real challenge (posted on another thread about that).

Anyway good to see we're not the only ones.

hi lostin

do you have a qualified teacher of the visually impaired (QTVI) yet? Do get the eye unit to refer you or ring your council and refer yourself, they usually come under the education service somewhere, often as part of a sensory impairment service. There's also the nbcs victa and look that are worth looking at. That's assuming you're UK based

I didn't see your weaning thread, sorry. It's good to talk through everything you do, even if she's not yet understanding, as she's so young keep the language simple and consistent so you might say, 'dd (use her name so she knows you are talking to her) food time', every time you go to prepare food as she won't be getting the visual cues that a sighted child would that food will soon arrive. It depends on how much vision your dd has, if she has some residual vision then think about colours and contrast, so if you have a white piece of bread then put it on a red plate for example to give her the best chance of seeing it, you may still have to guide her hands. If she has a white high chair tray then some really bright cutlery, plates and bowls would be good, ikea do some cheap and cheerful stuff.

If she has no vision or is likely to loose vision, or you just fancy doing it then objects of reference are a good way to go, so you'd give her an object that you give every meal time, eg a spoon, so that when she has a spoon in her hand she learns that food arrives. That works with plenty of other things like a plastic duck might indicate bath time. It allows her to anticipate what is coming next which again, sighted children get from watching you running a bath or seeing you get a towel out. So once she has the anticipation that food is arriving, you can run her hands round the outside of the plate of the bowl so she knows where the food will be and guide her hand to the food itself. Same when food is dropped on the tray, guiding her hand round till the food is found until she learns the process herself. Of course it would be easier to place the food directly into her hand but it's good to be thinking about independence and teaching her that when the food is dropped she can search round with her hands and find it.

my dd3 (7) has some residual vision that she uses really well when she wants to, unfortunately meal times she can't be bothered and rarely looks at her food, it still gets messy

Hi Ninja,

We're in Dublin but yes, the specialist teacher is coming next week to meet her. I have to be honest and say I have zero experience of serious disability in general so I keep ringing people/organisations up and asking whether there is anything else I should be doing? I don't want to miss anything or for her to miss out on any support. Probably making a right nuisance of myself now.

Arrrgh the weaning thing(sorry don't know how to link to other threads). I need to tackle the problem anew. She is a rascal. She has absolutely no interest in food, doesn't put stuff in her mouth in general and looks mortally offended if you try and get her to taste (not eat, just taste) anything. She's my first so I have no idea how serious it is that she's not weaned yet. The community nurse says it's very serious but I have learnt the hard way to take what they say with a pinch of salt! She's in the 91st percentile so not exactly wasting away. I'm hoping that one day she'll just wake up really hungry. I'm going to give your contrasting colours a try- she does have some vision so that might help.

I keep telling myself that there are no 20 year olds who only live on bottles.

being a nuisance can be a good thing Hopefully your specialist teacher will be a great help, ours was.

I have no medical training but I wouldn't worry too much yet, all usual guidelines go out of the window when you have a child with any additional need. Can you sit her on your knee when you eat so she gets an idea of what to do? Make it a fun time, make up some songs, anything to make it seem exciting so she wants to join in. She will get the hang of it eventually

Hi LostinLocation just ignore the idiots re weaning, she certainly is not fading away. They are so hung up on their books

Ninja can offer you far more advice than me (DS has extra problems) and I agree with all she has said make it fun and please do not get stressed, as you say the only bottle you see hanging out of a 20 year old is an alcoholic one.
Good luck and fret not

Lostin, I am not certain if I still have it (but I am on a cleaning binge, so if I do, I'll find it) but I was given a very good book when Bee was little about development and visual impairment. It was developed by the Canadian National Institute for the Blind and is given to all families when their children enter the vision early intervention programme. If I find it, I will let you know and pop it in the post to you.

One VERY helpful resource that would be available to you and anyone else who is caring for someone with a visual impairment is the Hadley School's distance education programme. They have tons of courses, which are totally free to family members. I have done the developmental one, multiple disabilities, the one about fostering independence, Braille and Abacus.

I strongly recommend that anyone who isn't familiar with Hadley to give it a look - the courses are excellent.

Hello! I had no idea there were so many of us with VI kids here. Little Lola (who's actually 6 going on 16 so not that little!) is partially sighted and I am registered blind (but mostly have enough sight to cope as partially sighted). Lola also has ASD. (and I'm a little on the spectrum myself :) )

Lola It is interesting that we learn more and more about each other and our DCs piecemeal here, but it is really nice to know that my family, just about as quirky as they come, is not the only one that is as "out there".

While Bee was born with her vision impairment, mine is catching up to me in middle age. I have been trying to think how I am going to manage as things progress, and have come to the conclusion that I probably might benefit from a chat with the Institute for the Blind... not there yet, but my vision loss is really starting to affect me, and learning how to manage now before it becomes overwhelming might be a good idea.

Haha... 2old2 I just had a flash of DD stumbling in the door at 18 swigging out of a can (which of course I never did myself at that age ). Weird that that is a happy thought.

Bee, thanks so much for those links. They look very interesting and should keep me busy for a while. I think while we're getting used to the situation it's good for DH and myself to feel like we have something to be doing that is helpful.

Hi lola. It's great to hear about others out there with little ones doing well and who have made it work themselves.

great link beemom! It reminded me about this that they give out in the UK. Or they used to anyway, it's been a long time since dd3 was a baby

I had that pack 6 years ago Ninja! I didn't really use it though. Dd had her own ideas about milestones and filling things like that in just worried me, and as dd has the same eye condition I do it wasn't like I didn't know what to expect, Not that it wasn't a shock that she was VI as I'd had my head completely in the sand and had assumed she would be ok (50/50 odds)

Beemom, sorry to hear your sight is deteriorating. Mine dropped lots in my late teens, but touch wood, has been stable for a while. I usually test at about 6/60 now but it varies throught the day and from day to day. There are some fantastic gadgets about to help with some of the challenges of VI. Not that I use any of them! I prefer a smart phone but social services / RNIB will be able to advise you so you can adapt slowly.

Dd is desperate for me to lose sight so I can get a guide dog!!!! (I hope I will keep enough useful sight for many years yet!) Besides I'm a cat person. (but even I can see that a guide cat wouldn't be a good plan.)

Hi All,

I have a quick question if anyone is out there.

So, I was at home this weekend and discussing stuff with my and my DH's family and I noticed that the word 'blind' seems to really unsettle people.

My question is whether I should be using the word blind at all. I know VI is more correct in our case. But my thinking is that the word blind is going to appear throughout DD's life in one form or another. She is registered as blind, will go to a school for the blind etc etc. My DH in particular hates it and gets quite cross. But DD will start to understand soon and I don't want her to think it's a bad/shameful/negative word. I'd prefer to upset the grownups now and let them get used to the term than risk her feeling upset ever ever.

But then maybe I shouldn't be pushing it on anyone if it's not the done thing?

I think it's entirely up to you what terminology you use and what you are comfortable with I would guess your family are still coming to terms with your dd's diagnosis and maybe using the word blind just sounds so final to them, that this is something they were hoping wouldn't happen?

I know there are often guidelines on what terminology professionals should use, where we are dd3 is always VI, never blind with the people she works with. She's also registered sight impaired, and schools are for children with VI, blind really isn't a term used anymore in this area. That said, that doesn't mean I don't say she's blind

To simplify things, I explain that Bee is legally blind (as she does have sight) and that I have a visual impairment (as I am losing mine). Just as people tend to look sideways at me when Bee stands up and walks from her wheelchair, unless she is carrying her white cane, being led by a guide dog or wearing sunglasses inside (all stereotypes of the blind) if I use the word "blind" without qualifiers, I tend to be questioned.

Frankly, unless it is necessary, her vision challenge doesn't actually come up.

Hi All,

I know this thread has stalled but but I have two questions if anyone is around to answer them.

1. Um... this is a bit awkward but did your child's diagnosis cause any issues in your relationship. I'm finding that DH and myself are very quick to row at the moment and also I think no one else really understands so the only person you can shout at (be angry at) is him. But it's not the best to be honest we're kind of struggling now that the initial phase of telling everyone is over. It's like we're trying to continue with normal life and there's no time for us to go and digest this massive change in our lives. It's not good.

1. What are peoples opinions of white sticks/canes? DD is 11 months and won't start any specialist training until Sept. She's already starting to stand. I can't decide if I should just buy her one of the baby ones and let her play with it or wait for the professionals. I met this older woman recently who's Vi child is long grown now and she was so nice- the one thing she said to me was don't be afraid to take risks. I kind of just want to give her the cane to play with. Is that a bad idea?