Being a parent can be very challenging, sometimes even more so when a child is visually impaired. For example, parents to visually impaired child might worry about which options will be available to the child, such as whether they will be able to go to university or not. In this post, I interview my parents and ask them about their experiences and their views on early education for visually impaired children.
Let me start with a short disclaimer. Every visual impairment is different, and everyone faces unique challenges. The experiences of myself and my parents are by no means representative to all visually impaired children. My main intention with this article is to inspire parents to seek out the conditions in which their children can thrive, such that they - if they want to - will have the option to go to university.
My parents' educational background
Let me first tell you about my parents' educational background, since this one of the strongest factors that will influence the academic success of a child (see this article in The Guardian, for example). Both of my parents went to university - my mum studied geology and social science in Germany and my dad studied history and German in Sweden. They were both quite invested in their studies (my dad even started a PhD in German, but later switched it for a job in IT administration). Just to give a clearer idea just of how invested they are, when I moved out aged 19, they both went back to studying by enrolling in full-time or evening classes. My mum retrained completely as a soil sanitation consultant and my dad took up history of literature. In summary, I come from a very academic home, which did help set the scene for my early education and later university studies.
Summary of the support I had
First, let me summarise what support I had in school. This will serve as background for the following questions.
Aged seven to nine, I had a pedagogue who helped me out with a number of things. I don't remember much of it, but she helped the teachers and made sure I could follow the lessons. She was employed by the school when I started there, and while she was mostly focused on me, a number of other children at the school also benefitted from her help.
When I turned ten, I had a special needs assistant who helped me out in and around class. She would read out what was on the board when I couldn't see it or the teacher didn't read it out loud. She stayed with me until I was twelve.
Teachers at my school went to professional development courses where they learned about teaching visually impaired students.
I had the following assistive technology permanently in my classroom: A desktop computer (extremely useful), a CCTV camera which could enlarge print and small objects (I used this occasionally), and a slanted desk to make sure I had good posture and didn't have to lean forwards to see things (also extremely useful).
For a while, we tried using a system called e-beamer. Sensors would capture text and images written on the board and transfer it directly to the computer, allowing me to see it up front. It didn't work very well though, as the cleaners would always move the sensors, requiring the system to be calibrated. This is a good example of how good intentions can sometimes be thwarted by practicalities. It's very important to keep trying new things to see if something might just do the trick.
Interacting with the school
My parents both found that much of the support available to us depended on engagement of the headmaster and the teachers. A vigilant headmaster would actively engage with the teachers and talk to them about my needs. If this didn't happen, it would be down to my parents to keep tabs on me and check that the teachers actually did what they promised they would do to help me. As a child, I didn't want to stand out and was reluctant to actively request more help, so my parents would make sure to regularly catch up with the teachers.
Both my mum and my dad stressed the importance of building good rapport with the school, and to focus on positive interactions, especially during meetings. In other words, instead of criticizing something that had gone wrong, they would focus on how the problem could be solved, and stress the crucial role of the teachers. For example, it was very important that the teachers were happy to integrate the use of the assistive technologies into their teaching. As this was at the onset of modern personal computers, some elderly teachers were still reluctant to take to technology. It was still important though that they would, for example, allow me to work with the computer when everyone else was writing by hand. My parents would try and convince them to do this by pointing out what valuable skills I would gain and that using the computer would save them and me a lot of time in the long run. It was important to also make sure the teachers felt appreciated for the extra work they put in.
It was also often down to my parents to come up with creative solutions to problems and get the teachers to implement them. Let's take maths as an example. When I was 11, the pace in maths class picked up substantially. I had a teacher who liked writing on the board, but she struggled to get into the habit of saying out load what she was writing. As a result, I fell behind. I found one thing in particular very difficult, namely switching quickly between the maths exercises and the paper where I was writing the exercises. This might not seem very important, but basically it took me much longer than the other children to locate where I'd been looking in the book, which made me slower over time. To solve this, my parents asked the teacher to copy out the exercises and pasted each into a workpad with some space under it. That way, I had the exercises and the paper in the same place and I didn't have to switch back and forth between two books. I quickly picked up speed, and I became really good at maths. Without that intervention, I probably would not be doing a PhD in physics today. It's a relatively minor change, but it made a huge difference.
The necessity of high expectation
This is maybe the most important point of this entire post. During our conversation, both my parents emphasised the need to maintain a high but realistic set of expectations, both when it came to me and my abilities, and the school. It is very easy to hold a disabled person to a lower standard. Sometimes this is of course warranted. For example, my parents never expected me to become a table tennis pro with my eyesight, so that would have been a silly expectation. They did however expect me to do as well as the other children in maths tests, because the visual impairment has nothing to do with maths ability.
Why is an education important for a visually impaired child?
I wanted to see what motivated my parents when it comes to education. I asked them about their views on university studies, and both of them said they believe that it is important for a child to pursue their passion and become really, really good at something. This doesn't necessarily mean academia as they encouraged my sister and me to take music lessons and pursue creative interests, too, but it did mean they wanted us to find a topic we enjoyed and pursue it. They both stressed that they believed this was extra important because of the visually impairment since some careers are simply not an option, like those that rely heavily on excellent eyesight. The reduced number of options made it even more important that we obtained skills that would make us competitive in the job market. My parents also thought that a strong education will also help employers see beyond the visual impairment. As my mum put it: "I wanted the first thing an employer asks for to be your skills, not your visual impairment". Basically, when you're really good at what you do, the employer will be more happy to accommodate you.
I then asked them what they thought my future would hold when I was little. My mum said that when I was first diagnosed with albinism, she was quite distraught as she didn't know what would be in store for me. She worried that I would not be able to access higher education, if that was what I wanted to do. She did however recall that there was one specific event that helped her feel more confident about my future. Just after I had been diagnosed with albinism. When I was two years old, she attended a meeting where a young woman with a visual impairment gave a presentation. The young woman was attending university and was generally quite doing well. This was reassuring, as it inspired my mum to think that 'if she can do, so can we'. My dad has a disability of his own, and was therefore less worried about my future. Things had worked out for him, so he was convinced there would always be a way forwards.
Integrated schooling
Both of my parents stressed that attending school together with fully sighted children was their priority from the start. There are a number of reasons for this. Firstly, a visually impaired child will eventually make their life in a world where almost everyone else around them is fully sighted. It is therefore important that they figure out how to communicate their disability and relate to their sighted peers as soon as possible. Secondly, in Sweden, which is where I grew up, there is only a handful of specialised schools for disabled children. Most of them cater to more severe disabilities, where integrated schooling is too much of a challenge, for example when children are both with both vision and hearing difficulties.
Good grades are key
Good grades are often required to study at university. With extra help, I was able to achieve the highest grade in almost all subjects, but the teachers did not think that they needed to help me beyond achieving a passing grade. They had many other children who were struggling academically, maybe through lack of motivation or learning difficulties, and they often didn't prioritise the changes I needed to excel. Therefore, this became something that my parents constantly had to fight for. Things became a bit better when I got a personal assistant. She helped remind teachers to make material available to me in large print, she helped me read what was written on the board if I fell behind, and generally make sure that I wasn't missing out. The assistant also sometimes helped me interact with the other children, as I wasn't very good at being sociable at when I was young, which might have been influenced by the visual impairment (not being able to see well makes it difficult to pick up on subtle social cues). This all ties back with what I wrote above about expectations: it's important to not relax the expectation just because the child is visually impaired. When motivation and academic potential are present, it's definitely worth exploring what extra help can be used to keep the child on track for good grades.
Assistive technology
Both of my parents emphasized that as a parent, it is really important to stay on top on the latest developments in assistive technology. Teachers and support staff were generally not very good at this, since it wasn't part of their primary duties. I was very fortunate with regards to this: My dad works in IT and my mum is generally very interested in tech. Both of them regularly checked out the latest gadgets and urged my school to try new things. Both of my parents early recognised that becoming good at using computers would be extremely useful for me in the future - everything can be enlarged and I wouldn't have to read messy handwriting. They made sure that I had a computer in school and that I learned how to touch-type (assigning each key to a specific fingers, thereby increasing speed and decreasing wear and tear on the joints). I will write more about this in a future blog post.
Technology didn't always work out perfectly though. My dad frequently took time off work to fix my school computer when something didn't work out. The school didn't have the resources to fix it at the time. Today it is probably easier, with computers having become very user-friendly and schools probably investing more into a decent IT infrastructure. Not everyone can take time off work, however, so it is important to make sure that there is someone who can help the child out in case something breaks.
One final thing my parents wanted to emphasise is the attitude surrounding assistive technology in the school. They wanted it to appear as normal and non-intrusive for me as possible. Basically, they didn't want me to feel different from the other children by using it, so they encouraged the teachers to incorporate it into their lessons. For example, the teacher could assign some people to work together with me on the computer. Today, I am very grateful for this, because it did significantly improve how I accessed information throughout my education.
Outdoors activities
For those of you with children with albinism, you know that outdoors stuff is tricky. For the uninitiated, albinism causes a pigment deficiency, which means that the skin is very sensitive to sunlight. Without applying sunscreen, I burn quickly and I am easily blinded by direct light. This means that being outdoors in the middle of the day is often quite challenging and involves long-sleeved tops and large quantities of sunscreen. My school frequently organised 'outdoor days', meaning excursions to a local lake site, to an open-air sports facility or into the forest. Being outdoors for six hours, especially in the middle of a sunny day simply wasn't an option for me. It was difficult for my parents to influence the planning of these events as they were usually attended by the entire school. This is probably a battle my parents chose to avoid, so I would usually stay home from these events, which was unfortunate because I would miss out on time with friends. We never really came up with a good solution here, but I wanted to include this example to show that, in the end, as a parent you ultimately have to prioritise.
Going to university
Finally, I asked them how they thought about me going to university. They both said they deliberately took a backseat at that point, ready to jump in when needed, but in general left it to me to sort things out. I do remember my dad helping me look for some tech that I needed during lectures. You can read more about that elsewhere on this site.
Closing remarks
Helping a disabled child thrive takes time, effort and creativity. It is an extra workload that parents have to take into account. My dad also pointed out that it's important to be aware of any gender difference, in the sense that women are traditionally expected to deal with family-related matters, such as school. If the other parent is not involved from the beginning, it can become very difficult for them to step in when extra help is needed. It's important to keep an eye on the tasks that would normally not take that much time. In the end though, it will always be worth it.
Going to university can be fun, challenging and rewarding. It can definitely be worth wrangling schools, teachers and the support system to make sure your child has the best early education that they could possibly have and that they will have the choice in the future to take up university studies.