Starting school when you have Ocular Albinism

Children with vision problems face a lot of difficulties when starting school, and not just the obvious ones, i.e reading and writing. We were very nervous about Yon starting Reception this past September, and we did a lot of ground work before that. This page will try to list down all the things we learned about starting school when you have Ocular Albinism (or other vision problems), and I hope you find it helpful.
I would appreciate any comment or ideas I haven't thought about, so feel free :)
As a disclosure before I start, I would like to make it clear that this is my experience with Yon, and that every child and every condition is different. These are just suggestions based on what we did, and should be taken in that regard.

The first questions you want to ask yourself when you start thinking schools -
1. Mainstreaming or special schools. This is a very big decision, and though it's not irreversible, it will be tough to change once made. I am no expert, and can't help with that. Every child is different, and only you, the parent, can know for sure what is best for your child. Just remember, some mainstream schools have vast experience with dealing with SEN children, so they might be worth checking out.
2. Statements. From everything I know, getting a statement based solely on vision impairments is very hard, almost impossible in fact. I think in cases where the child is legally blind it might be more feasible, but in cases like ours, where you are talking partially blindness, I wouldn't hold my breath.
3. What are your school options. What kind of schools do you have in your area, what are your chances of getting in to one of them, etc. I know, for example, that in Islington (but I have no idea how it works elsewhere), you can get bumped up the list if you have a medical condition.
4. Your council. As I understand it every council in the UK is different, and so you should go online (it is a good place to start looking) and see what options your council have for kids with SEN or Sensory Difficulties. Even if you don't have a statement it doesn't mean you won't get help.
5. Your hospital. If you haven't talked to the Family Support worker in your eye-hospital, this is the time. You want to get as much information, and formal documents as possible. Family support are usually more inclined to support partially blind registrations and help with talking to the SENCO in the school than doctors. You want your family support worker on your side.
4. Key worker / outreach advisor - if you don't already have one, get one. You need one. We found ours through the local council website, so like I said before - do check it out. Our outreach advisor comes to the school to observe Yon, talk to the teachers and SENCO, educate them about Ocular Albinism and help us make sure our voice is heard within the system.

My advice to every parent who asked me about school is to first of all walk the ground. Check every school, talk to every head teacher, meet every SEN co-ordinator. I know not all schools like you doing this, but the truth is I don't care and neither should you. You will have to be your child's voice and advocate anyway, you need to feel secure and know that you are leaving him in good hands, and you will need a school that is willing to walk the extra mile for you, so vetting them beforehand doesn't hurt. And one last thing, I know it's hard getting into schools, there are waiting lists and criteria and everything, and it is all true up to a point, because the school has final say in who gets in, so in order to have the best chance - meet them and charm them.

Even though Yon is going to reception in the same school where he used to go to nursery last year, because we wanted him mainstreamed (usually with children who only have vision problem that would be the case) and we felt we could get the best care for him there, we were still very unsure about his transition to reception. What you have to remember here are two things -
1. No matter how nice and helpful your school is, and how much experience they have with SEN children, the odds are they have no idea what Ocular Albinism is, and what children with severe vision problems need. It is up to you to teach them (that is where your advisor and family support worker comes in).
2. For children with vision impairments it really doesn't matter if they move to the room next door or to a whole new city. They rely very heavily on structure, routines and familiarity and might react very badly to changes, and reception usually means a new classroom, a new teacher, new children, new rules.

Our solution was simple - and I can't stress that enough, talk to them. You would feel like you are nagging, you would feel like they all can't wait to get rid of you, you would feel like "that parent". It's fine, you just have to remember that the teacher has 20 more kids in the class (more or less), the head teacher a 100 more, and the advisor usually works in at least two more places. You are the only one who is solely focused on your child. It is up to you and only you to make sure he (or she) doesn't get lost in the system. So talk to them, nag them, meet them. They mostly don't mind, and you will make sure they remember your child and his needs.
We have a nagging schedule, which goes like this -
We ask the teacher and the lunchtime assistant every day about his day, what he ate, who and what he played with, if he had any difficulties, etc.
Our advisor visit the school every half term to make sure his needs are met, and that he is having a positive experience with starting his learning, She observe him for an hour and talk to him and to the teacher and then we meet with her and with the SENCO to discuss everything.
We have a meeting with the teacher every half term to make sure everything is going on well.
We talk to the head teacher once a term to make sure it's all smooth sailing.
It sounds excessive right? But the truth is last year we didn't do all this and then we came in for a regular parent-teacher meeting to hear that our teacher thinks Yon might be autistic. Trust me, nagging is easier.

We started the transition process in May. Yes, four months before Yon actually started Reception. We had meetings with his nursery teacher to arrange the transition schedule; with our advisor who came three times - once to meet us and Yon, once to give the staff a basic training session about Albinism and vision impairments and one last time to meet with us, the reception teacher and the SENCO; with the reception teacher to make sure she knows what to expect; and with the head teachers to make sure we will get the help we anticipate Yon will need.
My advice here is to come to all these meetings prepared. Do your homework in advance, decide what you want to get or what questions to ask, write it all down (I type & print it all so I could give a copy of my questions to the people we meet with) and don't be embarrassed to ask.

This is our list of things I wanted to make clear to the school before Yon started reception, and I find I go over most of them in every conversation with his teachers even after -
1. We wanted to visit his new class during the summer holiday to make sure he feels secure on his first day and knows his way around. We got permission and brought him there every day in the week before he started school. We felt it gave him more confidence so I am recommending it strongly.
2.  Yon needs routines. He doesn't do well in unstructured environments so we wanted to make sure they understand that, and also he needs to know in advance what is going to happen, so we wanted to know what the schedule will be so we could get him ready.
3. Yon has food issues, and he had never eaten lunch in school before, so we were worried about him refusing to eat, distracted by the noise, etc. We wanted to make sure the school is aware and that he will get special care. Fortunately they have vast experience with SEN children and food issues in our school, and they put him in the Special children table.
4. Safe toys. Yon uses animals to make himself feel secure and safe. They are his safety blanket. We wanted to make sure he won't be told off if he needs them, and also to make sure that if he only plays with animals at the beginning the teacher will know what it means.
5. Talking. Or lack thereof. When Yon is in distress, doesn't feel secure, meets new people, goes to new places, etc., he doesn't talk. You can ask him whatever you want but he won't answer. He looks right through you and seems totally detached. We needed to make sure the teacher understand that. Because when Yon does feel safe, he won't shut up.
6. Wearing his hat in class. We wanted to make sure we got permission for that, as Yon wore his hat inside as well as outside. Since then he got new glasses that react in the sun so until the summer he won't need his hat indoors.
7. Going down the stairs. Because ocular albinism impairs 3D vision, Yon finds it hard to go down the stairs. He needs to hold on to the rail, he gauges his steps, and it takes him a long time. Even stairs he uses daily will take him longer than other kids. Usually they say - paint the edge of the step in a bright colour. BUT, some children with 3D difficulties sees that as more challenging, because for them a change of colour or material makes it seem like another step. So if there are steps, you want to make sure he gets to try them out before he starts school, and make the teacher aware of that.
8. P.E lessons, might be challenging. Especially when playing with small balls, or when people are running around really quickly, or when they need to climb and jump. I am not saying it's impossible for children with visual impairments to be good at sports, just that it takes time, and you want the P.E teacher aware.
9. Noise. You know how they say that when one sense doesn't work properly your other senses compensate? Well, with Yon it's noise. He gets distracted easily by noise, he has to find out what it means, where it comes from and who is making it. It's not because he isn't interested in what he is doing, or that he can't concentrate, so the teacher should be aware of that and provide him a quiet environment within the class.
10. Computer. Yon did not do well with the computer at home or in the nursery. We bought him an enlarged keyboard and a colourful mouse which solved the problem at home, but wanted to make sure he will get that at school too.
11. Size of lettering on the wall, on the whiteboard, on printed sheets. Very important. Very. You want him to be able to read everything, so it should be very large. For Yon a printed sheet should be font 16 or larger, and  much larger than that for everything else.
12. Placement of writings. Classrooms have a tendency to be filled with posters and letters, and materials on the walls. It's colourful, it's educational, it saves space. It's very bad for Yon because he can't see them. So make sure the teacher understand that.
13. Writing in pens. Children with vision problems need contrast. Pens give you better contrast than pencils. They are also easier to see because they are stronger.
14. Defined lines on the page. There is no sense in giving him a piece of paper with fine lines on it. He won't see them. He needs big, bold, defined lines.
15. No laminations. Laminations causes glare. Glare causes children with vision problems to see less. This is important for the school to understand. If you want to laminate, use matt, but never shiny.
16. Ability to move in class. Children with vision problems should be able to move in class if they need to see better. If he needs to come closer to the board, or move to one side of the room to avoid glare, than he should be allowed to do so and the teacher shouldn't think he is disturbing, or uninterested.
17. Whiteboard. In the olden days we had blackboards, they were nice and chalky. But these days we have smart-boards or whiteboards, which are smarter and cleaner but are also prone to glare and less contrast, so children with vision problems might find them hard to deal with. One solution is to have the child sit at the teacher monitor, where there is no glare and the lettering is more defined, and another is to connect an iPad to the monitor and have it all displayed there. That will also prevent him from having to look up and down all the time which is difficult for kids with vision problems, because it takes them time to find their focus with every movement.
18. Learn touch-typing. Well, not really in reception, but you want to get used to the idea that reading and writing might be somewhat difficult for him, and you want to get him used to the idea that he will move to touch typing as quickly as he can.
19. Never ask a child with vision impairment "did you see that?", because the answer will always be "yes". You should learn how to ask the correct questions, like "What do you see there?" and see the answer, and also learn what are the signs that he doesn't see. For example, Yon will start to talk about other things instead of answering the question.
20. When children with vision impairment get tired it's harder for them to concentrate and their vision deteriorates even more. If your child has a squint or nystagmus you know what I am talking about - if he is sick or tired it's more pronounced. So a reading lesson in the afternoon for example will be tougher for them than when done in the morning.
21. Loosing friends. It is difficult for Yon to see things clearly, so when everyone is wearing uniform it is tough for him to find his friends. Make sure the teacher understands that. They tend to forget about it, but he needs help in playtime too. He might get frustrated and upset if he spends too much time finding his friends and then playtime is over, or his friends moved on...
22. Work in small groups or one-on-one is better, so if the school can give you that even without the statement it's great. Try to ask.
23. Null point, is the point were your child utilises his vision to the max. It is the way he sees best. It usually involves a head tilt (Yon's is left). Make sure the teachers don't correct him to sitting upright. You want him to be able to develop his ability to help himself and to trust his instincts.
24. Being in charge. Yon needs to feel in charge of every situation and hates being told what to do. Some of it comes from needing control over his surroundings. Some from being the baby in the family. We are working with him on that, but the school needs to be aware of that too because some of it stems from his condition.
25. Enlarged print books. If your school follows the Oxford tree books there are enlarged copies. Yon is fine at the moment with the regular ones, so we are still waiting to see what will happen when they move to the harder ones.
26. Low vision clinic. You can get a referral (we are still waiting for ours) and they are supposed to help you find the right aids for your child. Can't tell you if it's worth it, but I can tell you to not count on it, or if you really want it nag them yourself.
27. Coat pegs at the end of the row. It is easier to find, and so it is advisable, but I didn't find it necessary with Yon as he just have to memorise where his is, and he forgets his coat on a daily basis anyway.
28. It is sometimes tough for him to understand facial expressions if he is too far away, and to see what other kids are playing with. He needs help with that. He needs to be told - do you want to go over to that table and play ABC with XYZ?

The last thing we did is teach him all the letters, some writing, and some basic maths over the summer. The teachers thought it was overreacting, and they might be right, but my logic was that it is going to be tough enough for him to overcome everything else, and find his place in school as it is, and I did not want him to have a bad experience in his first year of school. So I bought some workbooks, basic ABC cards, and used the iPad and made sure he has all the basic materials they will learn in class covered. I wanted him to have an advantage, I wanted to make sure he will be able to learn how to read and write (which we were very unsure of before), and I wanted him to have the extra confidence.

Yon has been in reception for almost three months now, and he is loving it. All the preparations we did really helped him and us and the school, and I hope at least some of them will help you too.