I have a visually impaired 10 yr old DD

[Beaverhausen]

Hi everyone,

I just need to know whether AIBU.

My DD is 10 she was born with OCA ocular albinism, she has no pigmentation in her hair, skin or eyes and is registered as legally blind. Although she is not completely blind but has nystagmus, low vision and photophobia.

My problem is this, she is in a main stream school, a very good school with a VI department who are exceptional within the school.

DD came home yesterday with her latest project in hand looking very down and sad. She has been working really hard on all her projects been putting in the effort with it all and we have been very proud of her she has show great progress.

She was very sad yesterday and told me that she feels that her projects are not being given the same attention as the "normal" childrens and found that her volcano project had been put in a corner and left there without any feedback from her teachers.

For a while now I have had this feeling that she is not being given the same opportunities or feedback on her work as the other kids have due to her disability. And that the teachers feel that due to her disability she wont be able to achieve the same goals i.e university etc as the others in her class.

This morning I called to arrange a meeting as I am very upset and disappointed that yet again my child is being tarred with the disability brush and not to expect much because she can just sit back and claim benefits when she is finished with school.

This is not our goal for our child and we do not claim benefits or ever have as this is not what we want for us or for her in life.

Am I wrong in wanting to confront the teachers about this?

I totally agree with you to speak to the school, they shouldnt behave like that. I really feel for you and your dd. I wish her all the success.

I don’t think you are unreasonable , but I think it would be a good idea to give some specific examples of when you feel she has been held back/left behind, and perhaps ask questions eg ‘how are we going to ensure dd has all the same opportunities are the other children?’ Rather than complaints. I think you’ll get more from the meeting if you approach it as a starting point to improvements rather than a complaint.

does she have an EHCP plan? It's up to you of course wether toy claim benefits but 8m sure she would be entitled to DLA as it supposed to be for the the extra expense that comes with a disabillity I don't know why you wouldn't claim it?

Yes I would speak to the school. There is no reason why your DD can't achieve academically in the same way as anyone else. Some of my family are registered blind and they are high academic achievers with good jobs. I would kick up a real stink if they don't start supporting your DD properly.

She was very sad yesterday and told me that she feels that her projects are not being given the same attention as the "normal" childrens and found that her volcano project had been put in a corner and left there without any feedback from her teachers

Certainly speak to the teachers but you need to have concrete evidence, rather than your dd having a 'feeling' that she is not being treated like the others.

In my ds's school there are 2 children with albinism (not sure what type, but both are severely visually impaired and registered blind) One is a high achiever but very reliant on his carer for his safety, but his mum is very positive and I would have no doubt that university is on the cards for him, no matter what the barriers will be.

First off - just to give you a positive story: I have a colleague with ocular albinism, registered blind, and he's a brilliant scientist, working in a really good research group with an international reputation - so bright people with this condition can succeed given the right support.

Second - there is an issue with (some) schools' and (some) teachers' aspirations for children with additional needs. My 10yo DS has dyslexia, and I've definitely encountered an attitude from the occasional one of his teachers (most are brilliant and can see where I'm coming from) that what you're aiming for is "good enough" rather than "what this child can achieve at their best" - i.e. if you take a child with additional needs and get them to a roughly average performance, this is a "success".

My reading of the situation on this front was confirmed by a friend who used to be an Ofsted inspector - the school's scores are heavily weighted in favour of getting the majority of children to an acceptable standard and demonstrating "added value". There's no huge incentive in the scoring system to stretch really bright kids (of course, good schools and good teachers will want to do this - but the rewards aren't built into the school scoring system for SATs), and schools are also struggling with limited resources to do as well as they can for as many children as they can. So you're in the business of getting the best you can for your individual child, while they are in the business of doing the best they can, on average, for several hundred children. You have to work with them on this one, while doing the best for your child.

So the question is how to engage with the school in a constructive way. I'd start, as a PP suggests, with pointing to individual examples - getting stuff on display, etc. Stress that you don't expect this all the time, but that it really means a lot to your daughter in terms of positive feedback and encouragement/motivation when her work her chosen. Also find members of staff who you can work with. My son's current class teacher hasn't been that helpful (to put it mildly: if she'd actually read his ed psych report and decided to deliberately do the opposite of all the recommendations, she couldn't actually have done much worse), but both the SEN coordinator and the teacher who coordinates IT tech have been very helpful.

The thing to remember is keep trying to engage constructively. Most teachers want to help, and will try their best within the limited resources the school has. If an individual teacher doesn't "get it", don't go in all guns blazing because the other teachers will (understandably) close ranks. Instead, try to keep communication with that teacher open, and keep nudging gently, but also try to identify other members of staff who will help (provided you haven't thrown a hissy fit about one of their colleagues first). Just keep saying to yourself "this isn't about me being right, this is about me getting what my child needs from a system which is very inflexible - now, how do I do that diplomatically?"

Absolutely speak to the school.

But I don’t know why you wouldn’t claim dla. It is there to help you as a family and give your child extra help - from anything and everything! It’s not wrong to claim a benefit you’re entitled to.

We claim dla for our son with autism - we receive high rate - he attends special school and it enables us to do all kinds of things with him. For example we are going to use some of it to take him on a trip to London to see all the museums as he loves science!

The school should be helping and motivating your child so definitely pull them up on that.

Hi ladies,

Thank you for your input. :)

The head of the VI department had called me, she is a lovely lady and has helped my daughter immensely.

She agreed with me and will be speaking to the teachers in question. We will be setting up a meeting in a few weeks time. I sometimes feel like an over protective mother and worry that I might take things too far but as she stated it is my right and parents being proactive is welcomed, so that was a relief.

But she did raise an issue it seems DD has a bit of a temper at school, and feels it is something we need to have referred. So I will be speaking to DD and seeing what might be the problem. And then speaking to our GP to see if we can get a referral for her to get to the bottom of her anger issues.

I just want the best for her and even though she is at a bit of a disadvantage to other children not to have this hold her back as she is quite capable of achieving just as much.

This is my only child and I had her quite late in life so it is all trial and error unfortunately.

And that the teachers feel that due to her disability she wont be able to achieve the same goals i.e university etc as the others in her class

Then those teachers are very, very wrong.

I have a friend who is classed as legally blind. Through her I've met many people in the wider blind/low vision community. I've never met so many lawyers in one place in my life. Seriously, so many within this particular group have gone onto uni/higher studies and have become lawyers, advocates and other professionals. So any teacher who thinks a child won't achieve anything due to their lack of sight needs to get over themselves and be re-educated.

This is my only child and I had her quite late in life so it is all trial and error unfortunately.

Ah it is for everyone

I can’t add to the brilliant advice you’ve already had, it’s great you have it in hand and you’re involved. Hope your meeting goes well.

Do you have a VI organisation locally that can support you and advocate on yours or your DD’s behalf
Guide Dogs UK amalgamated with Blind Children UK a few years ago and they now provide children and families with support and advice(nothing to do with actual dogs ).
If you would like me to find you any further support pm me

@emmyrose2000 you just made me realise one of the people I know who was first seriously visually impaired as a child but now completely blind is a lawyer.

EmmyRose you are so right. Thank you ladies, Hobnob we have fantastic support from her VI department they could not be better and with their help DD has progressed beyond expected.

I communicate with a lot of parents of VI children abroad in particular America and the help and support they get there is phenomenal. Whereby here in the UK you have to fight tooth and nail to get the support you need.

We moved down to Manchester 3 years ago and I could not fault the NHS up in Glasgow they were fantastic. We were here hardly a 6 months and they discharged her from the hospitals opthamologist and told to use high street opthamologists.

I was fuming but unfortunately they did not want to hear anything, my daughters sight is quite severe, the shape of her eyeballs are different to everybody elses, she has very low vision and severe photophobia.

So you can understand why I get up on my high horse when I feel something is not right.

You've already had some excellent advice from PPs on school; am glad that you're getting help for your DD regarding the anger she's expressing at school - is it possible she's experiencing fear & frustration around what her future might be like as a VI person but she can't really articulate it & it's coming out as anger? (At school because of the issues with her teachers &/or [perceived] differences with peers &/or because she doesn't want to worry or hurt you.) Plus of course at 10 there's always the chance that puberty hormones might be making an appearance & helpfully exacerbating things.

Have you been able to sort things out with opthamology? Sorry, I wasn't sure from your post if that was an ongoing issue or one you've already resolved. Am so sorry that happened.

Was wondering if your DD did any extra-curricular activities that might help ensure she continues to believe that she's just as valued & valuable as all the rest of her peers? Absolutely her school should be ensuring that happens in the classroom, but it struck me that reinforcement elsewhere might help?

I am visually impaired and have albinism and nystagmus.

Just because your DD and you have suspicions about low expectations because of her disability doesn’t make it true. I understand as a parent you want the best for your DD but she wouldn’t be the first child who thinks they are being treated differently and having an obvious disability, can make that leap in conclusion a lot easier.

You are lucky to have a supportive VI department and I’m glad they are helping but don’t let your DD’s disability become the most remarkable and distinguishing thing about her, it isn’t.

I went to a school for the visually impaired and there was a culture of low expectation there but it didn’t stop me from going to University or traveling the world twice, working, moving to mainland Europe, having a child etc. I simply didn’t get the memo that my VI meant I couldn’t do things and when stuff happened that I didn’t like, discrimination because of my visual impairment wasn’t my first conclusion even though sometimes it was the reason.

I was bullied sometimes by children and I have been stared at and talked about by adults, which would piss me off when I was younger but the advantage of being older, is not giving a shit. If someone stares now, I stare back (there’s nothing as satisfying as holding a mirror up to the thoughtless behaviour of others).

I look different and it took a long time to accept that most people don’t care and those that do make an issue of it, are in the minority.

Talk to her teachers, as a parent I know (parent evening veteran) that sometimes the child I experience at home is not the same child that her teachers experience.

Hi Marie, due to her vision she is unable to enjoy normal sports but she does go to football every saturday specially for VI children. She goes to dance classes every thursday and she plays the clarinet on Wednesdays.

Unfortunately finding childrens clubs in my area have been unfruitful. I have contacted one who specifically indicated that they do cater for disabled children and the assholes never responded back. Supposed to be one of the best clubs in the area too.

As for Opthamology all they said was that if the high street opthamologist feels she needs to see them they will refer her back. If we stayed in Scotland i can guarantee you they would never have discharged her.

It took me getting the head of the scottish RNIB involved in getting her into this school as the SEND department were giving us the run around.

Unfortunately I just have to stamp my feet every now and then for people to sit up and take notice of her and to take her condition seriously. Sad but true.

It took me going off at a headmistress this morning for them to actually admit anything and tell me about a few other issues they were having.

But thank god her VI head has stepped in to help, we would be lost without her. She is fantastic at what she does and really cares about the kids.

David Blunkett
Peter White
probably loads more people.

You are right to have high aspirations and to advocate for your child.

Thank you agent Johnson I never thought of it that way.

I have contacted one who specifically indicated that they do cater for disabled children and the assholes never responded back. Supposed to be one of the best clubs in the area too.

OP calm down. I know what it’s like to advocate for a child but you come across as the whole world is against her and it isn’t. She will pick up on this and the last thing that she needs is to have that perception.

The RNIB provided me with all kinds of aids (which I rarely used) and I was only occasionally referred to an ophthalmologist which was a PITA because tinted lenses and such, delivered not much gain for the level of inconvenience. At university, support began and ended with getting copies of the OHP’s before lectures (which made me Miss popular with the other students). However, the most positive impact on my quality of life has been recent technology; having the internet in my pocket (iPhone), an iPad and Google Maps (which helps with not getting lost and being able to do things on the fly without loads of planning).

As I said before, if people aren’t being as helpful and supportive as you’d like most likely it’s got nothing to do with her VI.

Some woman stopped me recently in one of those hideous soft play places and asked me if I was an albino, I replied yes and she then went on to comment that she was surprised because my eyes were blue/grey and not pink like her rabbit. She was dead serious, so I contained my laughter and went on to explain that I’m pretty sure that eye colour wasn’t the only difference between me and her rabbit and before she could defend broadcasting her ignorance, I was gone. Watch BBC3 “Things not to ask a blind person/ diabetic/ mixed race/ etc”, where you’ll hear some ridiculous things uttered by the general public and you’ll soon realise that we all have something that others will be curious or a dick about, humans eh!

Protecting your DD is not just about fighting battles, it’s about equipping her with the skills to deal with life’s challenges and yes, her VI will present challenges but the overwhelming majority of the challenges she will face, will have nothing to do with being Vi.

There are times when you will have to stamp your feet and your clenched fist will come into contact with a table or two but being angry and defensive the majority of the time, is so so exhausting. Don’t get me wrong, I can deliver a pretty impactful side eye when the mood takes me but I’m fearful that it’s overuse will diminish its impact and I I’m a parent who needs it to be at full potency to get me through DD’s teenage years.