Living with vision problems

Firstly, just to clarify, neither Becca or I have vision problems. MrJ6 does, however. He has ocular albinism. Basically this is a lack of pigment in the retina. This causes a nystagmus (involutary movement of the eyes) and reduced vision. He is very long-sighted and has needed to wear strong prescription glasses from about 18 months old.

Apart from his small size (unrelated) and the fact he wears glasses you probably wouldn’t notice a lot of difference with him. He runs around the house, narrowly missing doorways like all the rest of the kids. Get up and down the stairs okay. Jumps on the tramp; swings high on the swing.

All normal… But watch closely…

MrJ6 will sit right up in front of the TV in order to see it. And when I say right in front, I mean centimetres away (we’ve recently acquired a larger TV and are getting him to sit further back, but he still prefers to be close). We bought a large monitor for the computer (22”) and we still pull it up closer to him when he is using it. It comes closer and he uses about size 32 font when he is typing something so that he can see what he has done.

This is manageable stuff. He is good at moving around new and different places. He learns his environment and then can get around. The learning of the environment is very important to him as he has little or no depth perception. He has gained more confidence as he has got older but only a couple of years ago was very scared to go across bridges at a playground as he couldn’t tell how high he was.

At school he is doing well. He has had very supportive teachers and teacher aides. He also has support from a Vision Resource Teacher (VRT) and BLENNZ (Blind and Low Vision Education Network of New Zealand). He will have a VRT until he is 18. Through the VRT, BLENNZ and GSE (Group Special Ed) MrJ6 is very well supported with the technology he needs to cope at school. He has been given an excellent dome magnifier to help with his reading. He has a CCTV unit at school that he can put a book underneath and it will enlarge the text and change the colours/contrasts with. He can read well – just a little slower than some of his peers.

What breaks my heart a little though is doing certain things with him. A family outing to the zoo can be so difficult. He loves the zoo, but actually cannot see most things that others can. Looking for birds in the cages is hard. They are small and often the enclosures are so cluttered with trees, shrubs, bushes etc that he cannot tell the difference between one thing and the next. The animal really has to be right up the front of the enclosure and generally quite large before he can see it.

At one point he had glasses that were a little bit weak. When the script was changed and he put on his new glasses he saw a fly and it freaked him out. He had never actually seen a fly, fly! He was about 4 at this stage.

Why am I writing about this? I guess I am writing this to raise awareness. Even if someone is wearing glasses, it doesn’t mean they can see well. MrJ6 cannot make out who someone is standing on the other side of the road unless they speak to him. As parents we need to be aware of the limits of his vision and help him accordingly. Others need to be at least slightly aware so they can support him if needed. His peers always help him out if he needs it. His siblings do the same.

Lots of people wear glasses. But there are so many different issues with vision. Be aware of those around you and offer your support if it is needed.

It’s all about LOVE

It’s been an unusual week for our family. Rebecca and the kids have all been away to see a sick family member, and I’ve been home alone so that I could still go to work. It’s always tough being apart from the ones you love, but occasionally this it what happens. What it does though, is it reminds you not only how much you love them, but WHY you love them.

I might complain sometimes about how noisy the kids are, or how exhausting they can be, but over these past few days I would’ve loved to have heard them playing, shouting and even arguing! The interactions – both pleasant and unpleasant – are important. They’re part of what makes a family.

So parents… Give your kids a hug. Give them a kiss. Play with them. Tell them how much you love them! Do it even after you’ve had to discipline them. If I hug and love on my kids after I’ve growled them for something, they always respond positively. I’ll tell them that I love them and they always tell me, “I love you too.” That’s a moment I know I’m doing an okay job as a Dad.

Don’t forget to show affection to your spouse also! Show love to your husband/wife in front of the kids. Give them a hug and a kiss. Tell them clearly how much you love them and how fantastic they are. It’s such an important thing to model to children – how to be loving parents.

Raising a family is all about love. Let’s share it around!

Nathaniel

Parenting: its not one-size-fits-all

(via http://babybrewing.com/)

As soon as you have an obvious baby bump people seem to think that every conversation is an opportunity for them to give you any and all parenting advice they possess – regardless of whether they have children themselves or not. However well-meaning these people are, there is one parenting truth that seems to have escaped them: there is no such thing as a one-size-fits-all approach to raising children.

Every child, and every situation requiring parenting skills, are different. Like it or not, the way you were raised will influence how you parent your own children. In some cases you will strive to imitate the best parts of your childhood by copying what you remember your parents doing. At other times you will deliberately do the opposite of what you recall happening to you or your siblings. Factor in that your co-parent has a similar yet unique war going on their own head and you have a recipe for problems! Parents need to communicate. Talk, talk, talk about various potential scenarios and how you hope you’d respond to them. When you have decided together what approach to take, you will be able to work as a team.

Methods of discipline, in particular, cause the most debate. People have different comfort zones for how tough or lenient they choose to be with their children. Compounding this, something that works for one child will not necessarily work on another – even within the same family. There is nothing wrong with seeking ideas from others, but those of us who have been-there-done-that need to remember that there is nothing as annoying as unsolicited advice (something I am conciously trying to stop offering).

At the end of the day, all you can do is smile, nod politely and say “I’ll consider it” or “I’ll keep that in mind”.  They don’t need to know that in reality you only thought about it for as long as it took you to reply!

Family culture

I’ve been doing a bit of thinking recently about having a family culture. I realised that in 3-4 years, MissK10 will be 13 or 14, and probably getting rather independent. But I want to make sure she is safe, comfortable talking to me and Rebecca, and has good values instilled in her to help her make the right decision. This isn’t just about her, it’s about all my kids, but as she’s the oldest, she’s going to get to this stage first.

So Rebecca and I have decided to sit down sometime soon and discuss what we would like to see happen. Obviously our kids will have to make their own decisions, however I hope that we have been a good influence on them before this happens. I would like to think that we have taught our kids values that will prepare them for making the right decisions to do with boy/girl-friends, being able to stand up for what they believe is right, sticking with their convictions etc.

This sounds like it should be easy for Rebecca and I to discuss what our family ‘culture’ will/should be, however we were brought up in very different ways with some different values. So there could be some compromise, discussion (perhaps heated) going on to decide on what stand we will take.

I think ages 13 and 14 is too late to start doing this. Values need to be instilled at a young age, and we’ve been doing this with our kids. However, they haven’t yet had to make difficult decisions other than should I yell/scream at my sibling because I don’t like what they are doing?! We can only do so much as parents, but if we don’t make an effort we will regret it. At least by doing this, when our kids make wrong decisions in the future we can say that it was their choice and we did what we could. We won’t leave them out to dry – we will still support them and help them, but they will have to deal with the consequences. I don’t want to be the reason for wrong decisions being made.