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SN children

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Original poster

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

45 replies

mackerella · 08/03/2013 19:56

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?

OP posts:

TheNinjaGooseIsOnAMission · 02/05/2013 10:39

hi lostin I think what you are experiencing with your dh is incredibly common, it's often brought up by others on the sn board and is certainly something I can relate to. Even though we are years along from dx ourselves now, we still have our moments with the stresses of all the extras that come with a child like our dd3 but we're mostly holding it all together! It's hard, I don't think there are any easy answers, sometimes I feel better if I can get some time to myself and do something nice, other times it helps to have time with just myself and dh without the kids.

I have no idea about canes, it's not been appropriate for dd3 to use one yet

MareeyaDolores · 02/05/2013 21:05

No idea about canes and VI... but parental gut feeling is generally a much better guide to interventions than any professional. No matter how well educated or well meaning .

BeeMom · 02/05/2013 21:58

Generally, when doing O&M training, a child is started with something that looks almost like a push walker with curved front legs. Bee transitioned from this to a white cane very early, within a month or so, but that was what her O&M instructor started with. Also, there are a LOT of different tip types for the cane, so choosing the right one is something that you generally do with O&M.

Bee has some pretty severe impulse control issues (and I can tell you being whacked in the head with a white cane HURTS) so we were adamant that the cane was not a toy. Even though she is not starting to train until September, is there any way you can speak with her instructor just to see if he/she has an objection to you getting her a cane now.

I know one family whose child was clearly not willing to wait for O&M to start walking... they got him a push wagon similar to this and padded the handle to protect his face if he fell forward. They weighed down the wagon part with bean bags and let him go. Admittedly, their walls did take a bit of a beating about 10cm off the floor

As for the distance between you and DP. sadly, this is very common. Once the initial "shock" from friends and relatives wears off, they return to life as normal, leaving you to feel as if you are on your own - and with no one to vent to but your DP, there can be a lot of venting. I have a friend who has a child like Bee - I whinge and vent and bitch and moan to her, she does the same about her daughter to me. That way, we both have the chance to let off steam, we can both unload to someone who gets it, offer suggestions or just lend an ear, but we aren't doing it to the person who is just as stressed as we are about the same things...

We are here to talk - you can add me on FB if you like. That stress and fighting is what ends the marriages of the majority of families with complex children - recognising it now and trying to do something about it will do so much to getting through all this.

ProudMumVI · 04/05/2013 16:10

Hi I'm mum of a visually impaired son he also has hearing impairment. I'm new to the site so just getting used to it. Would love to chat to any fellow mums as its good to chat to people who know what we are all going through x

2old2beamum · 04/05/2013 16:23

Hi my son 14 is deaf/blind and has other problems. He has a cochlear implant which gives him a few enviromental sounds. It was put in too late to give him speech.
He uses Caanan Barrie (limited) on body sign language to help him communicate.

ProudMumVI · 04/05/2013 16:31

His my sons 9. He is able to hear quite well, he just can't hear certain tones and sounds. He has intra ocular lens implants in his eyes. He's registered severely visually impaired (which is the same as the previous blind registration). His eye condition is a hereditary condition.

I've not heard of Canaan Barrie before. My friend uses makaton with her son who has ASD x x

TheNinjaGooseIsOnAMission · 04/05/2013 16:48

hi proudmumvi, welcome to the board My dd3 has a vi and hi, did your ds have cataracts?

ProudMumVI · 04/05/2013 21:48

Hi, thanks for the welcome :) yes he had cataracts and has had a few complications and problems with his pressures. Did your daughter have cataracts? X

TheNinjaGooseIsOnAMission · 05/05/2013 09:01

my dd3 was born with partial cataracts so she still has hers, one is quite dense but won't be removed as the retina is damaged and won't restore any vision, the other they won't remove until it grows a bit more. Sorry to hear your ds has had trouble with his pressures.

Funbird · 05/05/2013 10:37

Hi everyone. Thank you fo the invite to this thread ninja. I am new to the site and going through the school issues my son is just turning 7. Although his vision is being looked after really well by the hospital the support outside this is a bit patchy.

I come from a family of cataract and glaucoma sufferers. My family has always had that you can do anything attitude. I have vision in the 6/9 6/12 range due to cataracts. I am stunned that the support is so different now from when I was a child.

I would say never be afraid to let your little ones try something. We have the odd tumble and a lot of bruises but in the end it is worth it if it makes them happy.

Relationship side can be tough my DH had no experience of VI before my son. He coped really well until school where the differences became more evident and now causing some difficulties. Weirdly he didn't notice how our child was different as we don't know many other children

ProudMumVI · 05/05/2013 21:52

Hi, I'm a single mum now so deal with it all on my own so don't know about relationship problems re: vi (our problems were to do other issues).

It seems that getting the right support for our children is a bit of a battle :( it's unfair that we have to fight for much needed help!

TheNinjaGooseIsOnAMission · 06/05/2013 09:20

we always had really good support from our QTVI, but found the school really just didn't get it no matter how many times she went in and explained it. Thankfully dd3's current special school is fab, it just stresses you out so much when you feel like you're saying the same things over and over again and just being ignored.

2old2beamum · 06/05/2013 20:55

ProudMum VI Sorry meant to get back earlier but things a bit manic (what's new?)
Canaan Barrie is "on body sign language" Makaton is not appropriate for Jay as he is blind. We sign on his body and he uses his body to sign back. EG thumb on his forehead means I am a good boy and when he has done well we put our thumb on his forehead. He has many more signs!
It sounds complicated it is!!

TheNinjaGooseIsOnAMission · 26/08/2013 11:13

just bumping to see how everyone's doing I can't believe the holidays are almost over and we're getting sorted for going back to school next week! Dd3 can't wait, she's missed everyone at school

BeeMom · 26/08/2013 15:35

Funny, Ninja, I was thinking about this thread yesterday. Bee is starting at a new school (part time) next week, and I was surprised to know that the vision itinerant didn't even know about her. There will likely be a lot of settling in - in Y3 the visual demands increase a lot, and my gut instinct is that she is not going to have an easy go of it :(

eggandcress · 26/08/2013 16:27

Hi all
You are definitely correct BeeMom the visual demands really increased around this age for my dd, coupled with the fact she had the teacher from hell in year 3, it was tough for her. Year 4 was when all hell broke loose and I had to be very proactive and get her situation sorted out. Year 5 got better and year 6 was brilliant!

Next week she is starting at secondary so we will see how that goes! She does not seem worried. We have been doing practise walks to school ready for the start. Actually I think she is excited. She has the same itinerant vision specialist to look after her.

BeeMom · 26/08/2013 18:01

Thanks for responding eggandcress - Bee has been in a very specialised and supportive setting so far, and the last thing we need is to have another barrier blocking her ability to learn :(

Poor thing bent her glasses a few weeks ago when she fell (better her glasses than her face, but still...) and this morning they finally fell apart. Fortunately, she still has old ones, so she can limp through until we get her to the ophthalmologist, but she will be wearing an old and underpowered pair of glasses.

I have heard that Y3 is tough across the board. I am trying to be excited for her, but my gut is in knots...

TheNinjaGooseIsOnAMission · 26/08/2013 20:03

dd3 will be going into y3 but she's at a ss so not the big jump for her, hope all goes well for bee, changing placement is such a worry! Dd3 is slowly getting better with her breakages do you usually have a long wait for new glasses?

good luck for your dd too eggandcress

I'm trying to persuade dd3 it's time for bed, I'm not having much luck, sleep is for the weak going by the look I'm getting

BeeMom · 27/08/2013 02:20

We are fortunate, Bee will be able to get in to her ophthalmologist the end of next week, so once that is done, we will have to collect the paperwork from the disabled children's office and we can start looking for glasses. This is actually the first pair that has been full on broken - and she has been wearing glasses since she was 6 months old.

The fall she took was a good one - she scuffed her face and flattened her glasses - I shudder to think what her little face would have looked like if the glasses hadn't taken part of the force of the fall. I hauled out an old pair of hers - not her current prescription but certainly better than nothing.

The placement change is partial - she will be 3 days in the SS and 2 in the MS. The SS will consult and handle purchase of equipment/tech etc, but because Bee's things are so personalised at the SS, no one thought to include the ViT. She will be in a class of 28 students now, and have to see the blackboard, and access her books... There will be a lot of visual demands (and she will be sharing an EA with a little girl who is cognitively very able but physically very involved - I am not sure how that is going to work out at all).

I have to remind myself to breathe - and know they will do their best for her. We go to visit the school on Wednesday - it'll be the first time Bee has seen the place. Hope she likes it.

TheNinjaGooseIsOnAMission · 27/08/2013 13:33

dd3 has the eye unit end of next week so it'll be new glasses for her too, she gets very bored with all the waiting around at the hospital, I forgot the ipad last time and it was absolute hell. Bee's fall sounds nasty, it's horrible watching them going flat on their face.

I hope Bee likes her new school, how nerve wracking, get that wine chilling ready

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