Weaning a baby with visual impairments

[mackerella]

(I've just posted this on the weaning board, but thought I might get some good advice here too)

Has anyone got any experience of weaning a baby with visual impairments? We've just found out that DS has extremely limited vision in both eyes, which may reduce to none at all, depending on the success of various treatments over the next few months. We had intended to do BLW, but I'm now not sure. OTOH, part of me wants to go ahead with BLW anyway, on the grounds that:

a) it will help DS develop his fine motor skills (which are not bad, actually)
b) it will help his independence (he's quite an independent chap already, and I'm keen not to 'baby' him)
c) he'll probably feel more comfortable directing feeds himself rather than having spoons full of food appearing from nowhere and being shoved into his mouth when he's not expecting it

We were thinking of starting now (24 wks), which is a tiny bit early, just so we don't have to start this in the middle of some very intensive medical interventions. DS is EBF, so I'm not worried about him getting enough food - I'd just like to give him something new to do (and take our kinds off his treatment!)

Are we mad to be considering this? We're totally new to this (both the weaning and the VI) so any tips or experiences you can share would be very welcome!

[TheNinjaGooseIsOnAMission]

A lot will depend on how much residual vision he has and what he can see. I'd recommend getting in touch with your sensory impairment service and get some one on one advice from them. Blw can still be done, just a little differently, unless he has muscle tone problems which would make it a little trickier.

If he has almost no vision and can't see a plate in front of him when sat in a chair then you could try something as a term of reference that is associated with food, eg you may give him a plate to hold so he will learn when he holds the plate then food will come and use the same wording every time its food time. Remember that for him, everything will be coming out of nowhere, this will be no different and will be his 'normal'. You can run his hands round the edge of the high chair tray, eventually he'll learn where the edge is and the food will be within that, put the food on the tray and guide his hand to where it is, food is usually a pretty big motivator so he will soon learn how to find it. You can of course put the food straight in his hand but it will help his independence later if he learns where the food will be as well.

if he has a little vision then you can still do any of the above but use a plate or bowl that is a contrasting colour to the food where possible so it stands out. If you think of a white piece of bread on a white plate, it's not going to be easy to see, put it on a red plate and it'll be more obvious. Although you may find like we did with our dd3 that once she learnt where food will be she doesn't actually look any more, she just feels till she finds something. If she wants something in particular then it's normally nose down to tray to get a closer look.

hopefully that'll give you something to try to start off with, you'll soon figure out what works best for him, it's one of those things like every thing else, it's trial and error and go with the flow to work out what he will respond best to.

[NoodlesMam]

Ninja's advice is brilliant. Have you had any contact with the Vision Impairment Service? We have a QTVI who visits us on a regular basis to offer advice and she shows us how to help our DD2 without stifling her independence. I've honestly found her to be an invaluable source of support and advice. The service is available to all children with vision impairment from birth so if you havent seen anyone yet you could perhaps give your DS's eye doctor's secretary a call and ask to be referred. It seems strange to me that the service is there and imo a fantastic service to have, yet I found out about it through MN and had to call the hospital and ask to be referred?

I ditto the colour contrast advice Ninja gives. My DD2 doesn't have a mat under her plate, she has the contrast of the black table underneath, and we also only have plain plates, no patterns, and I run her finger round the edge of the plate to make sure she knows where the food is. She does usually end up with her nose almost in it but she gets the job done.

The only other advice I would give is to learn from your DS. My DD2 amazes me every single day at how well she adapts to every situation thrown at her. Just when I think ' oh no, she wont be able to do that', she finds her own little way.

[mackerella]

Thanks ninja and noodles for your very useful advice. Lots to think about there!

We're still not sure how much DS can see, but the doctor who diagnosed him said he has no central vision and may have some peripheral and navigational(?) vision left. I'm not yet sure what the implications of this are. His condition is progressive, so this may change over the next few weeks depending on treatment.

We haven't been told about the visual impairment service - in fact, haven't been given any support at all yet! - so I'll chase that up. We're just reading everything we can find and trying to make decisions with a mixture of empathy and common sense. DS's diagnosis was very recent so we're also trying to get to grips with some pretty life-changing circumstances.

WRT weaning: I spoke to the lactation consultant who runs my local bf support group and she said it would be ok to hold off weaning for another month or two, especially if it would be interrupted by hospital stays, surgery, etc. DS has been on iron and vitamin supplements since birth for a totally unrelated condition, so I don't feel he desperately needs solids yet. I'll try some of your suggestions - having a mealtime routine, getting him to feel comfortable in his highchair, letting him explore his surroundings, etc - but won't stress about food yet. We tried him yesterday with some steamed sweet potato and carrot pieces but although he picked them up and brought them to his mouth, I don't think he recognised them as food. I think he's not really ready for this yet, so we'll keep it fun and unpressurised. If he happens to eat something as well, then that's a bonus!

Hope you don't mind my asking: how old are your DDs and have they both been visually impaired from birth? (PM me if you'd rather.) It's so heartening to hear some positive stories!

[TheNinjaGooseIsOnAMission]

dd3 is 5 and has had her vi since birth, she has a genetic syndrome and the vi and plenty of other stuff is part of that. She's very short sighted, has damage to the retina and a small amount of optic nerve damage in both eyes and a partial cataract in her left eye. She has no useful vision in her left eye, but has slightly better vision in her right eye, she's worn glasses since she was 7 months old but they just correct the shortsightedness.

You should be able to find the sensory impairment service on your council website usually under education, you may be able to refer yourself, they may call themselves vi service or something else but you are looking for the mention of a QTVI (qualified teacher of the visually impaired) the service here is fantastic and have given us so much support over the years. You could also try doing a search of the yahoo groups to see if there is one specific to your ds' condition. I think most social service departments have a vi team as well, so it may be worth trying them as well, dd3 has a card they issue to people with a vi. She was issued with her vi certificate from the hospital but is also registered locally if that makes sense.

most people are surprised to learn she has a vi, she charges around like all the other children and gets stuck into everything. Ok she has a few more accidents but she hasn't realised every one else sees a little more than she does

[NoodlesMam]

just back from holiday so sorry for the late response. My DD2 will be 3 this week and has been vi since birth, although we didn't know until just after her 2nd birthday when her right cornea scarred over.

DD2's retina isn't developed properly, her left optic disc is slightly small, she's short sighted in her right eye and very long sighted in her left, she also has limbal stem cell failure which means the blood vessels are growing into her corneas and the cells from the white part of her eyes are migrating onto her cornea - thus clouding the 'clear window' part of her eye. The LSC failure also means that her corneas don't drain properly, they swell, she often has infections and the epithelium (skin covering the eye) is rough rather than smooth so her eyes constantly feel gritty or scratched, eventually both eyes will scar over although we don't know how long that will take, also because of the scarring to her right eye this is now amblyopic (lazy eye, wanders off). I still feel guilty for not knowing but even the eye doctor was surprised to find what he did. DD2 was supposed to be having a basic op to peel a bit of loose skin off when the doc found the 'loose skin' was scarring and all the other things. So I suppose that just shows how well kids adapt.

Like Ninja's DD, my DD2 charges around like any other child, infact it's amazing to watch her because I know her vision is so bad but yet you wouldn't know it. Just the other day she'd had her night time 'vaseline' ointment put in, the room was becoming dark, yet she still managed to navigate across the room to find a book like she would at any other time??? She doesn't seem to bump into things but we do have to watch her near steps as she doesn't have much depth perception. My DD2 doesn't let her vi stop her from doing anything at all. Occasionally for her own safety I have to stop her and make her feel her surroundings (we're often seen nose down at steps while she feels the edge).

When we found out about DD2's eyes my whole world fell apart, it will be a year in August and I still have bad days and still shed a tear now and then. But then I look at my baby girl and see that she is so happy, there will be times when she finds some things hard, life will be a bit different for her but I know she will find her way in life because she already does, she finds her way of doing things, mostly without being taught. I learn from her every day, I used to be terrified of doing things wrong, of stealing her independance or maybe giving her too much but she lets me know in her own way what's right for her.

DD2 hasn't been registered yet as we're waiting till her next appointment and another vision test with refraction, she's only recently started wearing glasses.

I hope you've managed to get in touch with your local vision impairment service by now? Feel free to PM me any time if I can be of any help.