The power of voice: How to teach your child to self advocate by Holly Scott-Gardner

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Education can be a very confusing setting for parents of children who are just diagnosed. You probably have lots of questions, like can a blind person really fully participate in school? Will they ever be able to achieve the same things as their peers? But most of all you probably wonder how you and the people around you can support your child.

Here I hope to offer you some practical tips for managing various subjects at school and how self-advocacy, most of all will benefit your child in the future.

At 16 I returned to a mainstream school environment by choice. It was by far the best decision I ever made, though that’s a post for another day! I did however face significant challenges in some areas which I overcame through a combination of discussions with teachers and coming up with my own solutions.

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I’ve always been a braille user and as a child my reading speed and accuracy were very high. However from years 7 to 11 at school I began to use electronic text more and more. On my return to mainstream school I hadn’t considered the impact this had on my reading speed and whether braille was actually the best format for me anymore. I chose to use braille almost exclusively in all my a-levels and it was a very difficult experience. Had I maintained my previous reading speed I would have been able to keep up but with the deterioration in my skill level I couldn’t.

As a result I struggled through, unwilling to admit that I wasn’t able to keep up. I didn’t ask for my English books to be given to me electronically because I had no idea that I could be in charge of my own support needs. I instead chose not to do the work and when possible avoided going to school at all. This isn’t a practical solution!

From this experience I learnt a lot of things. Firstly, even once you have learnt braille it’s good to have a reading test at least every 6 months to assess your current reading speed and accuracy. This way, if it starts to slip you are aware of the issue. You should be able to ask the teacher of the visually impaired that supports your child for this, and once your child is older encourage them to take responsibility and organise the tests themselves.

I would also advise that every blind student has textbooks electronically, even if they are going to use braille as their primary format. It means they can switch between the two when needed. Another technique is to find out what chapters will be used in class in advance. If your child is in secondary school encourage them to be responsible for asking teachers to let them know what section of the book they will use in the next class. Even if the braille book contains the print page numbers it may not line up with the edition that the school are using. It allows the blind student to make sure they will be able to find the right place in the book quickly, rather than spending the first five minutes of class looking for it.

I spent two years studying for my a-levels and although it was a very complicated time I learnt so many things. Most of all once I left I understood exactly what I needed in order to succeed and that I was allowed to tell people when something wasn’t working for me. I had always assumed that because I was a child, I couldn’t tell adults that things they were doing weren’t effective.

I then went on to study a BTEC in sport and exercise sciences. Before I started I went to visit the college a number of times and meet the learning support staff. I explained that I wanted all my books electronically, and if possible could the corresponding print page numbers be added to the text. I didn’t bring either of my parents with me when I did this and I think that was crucial. I needed the college to be aware that these were my support needs, not what my parents thought I’d benefit from. Once your child is over 16 they should be able to articulate what support will work best for them. It creates a stronger relationship between the student and the school and gives the student the ability to manage their own support. Understanding what you do and don’t need is vital to success once you have left school and progressed onto higher education and employment.

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A lot of the course material was very visual and I worked with the tutors to make it accessible to me. For example when studying a unit on anatomy I used tactile graphics and models. I had a model of the heart that could come apart into two sections. One of the assessment pieces was to label a picture of the cardiovascular system; instead of doing this I explained the whole system verbally. It was a compromise that allowed me to meet the assessment criteria in a way that didn’t put me at a disadvantage.

We also studied a unit on lab and experimental methods. The problem with this unit was we would have to test blood samples. I knew that I would never be employed in a position that would require me to take blood. Whether it’s right or not, a company would likely not risk it for insurance reasons. So I asked if I could take a different unit instead and complete it in my own time. Again, this was another moment when self-advocacy benefited me greatly. My tutors knew that I understood exactly what I could and couldn’t do and so they trusted my judgement, we both decided that taking an alternative unit was a logical step.

It may be hard to give your children control, and allow them to try and advocate for themselves at first. There will be people who don’t listen and assume that a disabled person can never really manage their own life. But these people are wrong; your children can grow up to have a strong understanding of how to modify educational resources to make them more accessible. They can discuss their needs with professionals. It is exactly what they should be doing.

If you feel like your child is very dependent on you for all these things and they are in secondary school you could try starting a conversation with them. Ask them which parts of the support they receive work best, and if there’s anything else that would make life easier for them. Encourage them to talk directly to subject teachers where they are struggling, instead of relying on you or a teaching assistant to do it. Most of all, teach them that their voice is valued, and that they do have a right to speak up. A lot of disabled children grow up without even realising that they can manage the support they receive. They are so used to other people doing it they don’t know that there is a place for their voice.

I’m about to start university and I’m so thankful that I have the skills I do to explain what I’m going to need. So far the experience of organising support has been incredibly positive. I know what technology works best for me and in which areas I will require more help. It’s very easy to look at someone and assume they were always a certain way, but I wasn’t. I’m lucky that I’ve been given the opportunities I have by my family to be fully responsible for my education. At first, you may need to work with your child, but each time take one small step back, I’m sure you will see a difference.

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