Seeing Clearly With Antonia Chitty

Podcast Episode 29. Being able to see properly can really transform a child’s life according to Antonia Chitty. As a qualified optometrist and author Antonia is passionate about getting all children’s sight checked. She explains that many parents feel daunted at the prospect of taking their child with additional needs for an eye test. However, as she explains children don’t need to be able to read or communicate verbally to have their eyes tested. Antonia also talks about the signs to look out for that indicate eye issues including preferring things to be close up, squinting and headaches. Antonia provides some very practical tips for dealing with eye tests as well and some useful resources to look at.

We also discuss relationships, an area in which Antonia has also written, and the effect having a child with additional needs can have on relationships – in particular, the relationship between the parents. Many parents report that they feel isolated when their child has an additional need. They often feel that they don’t have anyone or anywhere to discuss the pressures put upon their relationship. It can be very dividing. Antonia advises to go and get help, acknowledge that it’s taking its toll, and reminds us there are strategies available to help us.

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Podcast Transcript
Welcome to episode 29 of the Journey Skills podcast. This episode, I’m talking to Antonia Chitty who’s an author as well as a qualified optometrist. Antonia has written a number of books on health issues as well as on special education needs.

In our chat, we talk about the importance of getting eye test for our children and how to manage the process. We also talk about one of the other areas she’s written on which is about relationships and the impact having a child with special education needs has on the family, particularly parents’ relationships.

We talk quite a bit about why young people with additional needs often go undiagnosed with sight issues and one reason seems to be that when our children are young, we often have so much going on that we’re pretty overwhelmed and there’s something hits us in the face it’s not going to get noticed. We were lucky, if you can put it that way, that our daughter spent time in hospital when she was quite young and really had a set of assessments done on her. So, her issues with her long sight were picked up really early. But I confess that even today, getting a sight test done still comes way down on my list of things to worry about. So, talking to Antonia was a timely reminder that that’s not a good thing to do.

Antonia also addresses the other reasons at eye test get avoided and that’s in part because some of our children frankly don’t like people getting up that close and personal to do the eye test. Add to that, the perception of having an eye test means you need to be able to read and understand those large letters then that’s another reason to avoid having eye test done. But as she explains to us, there’s plenty of ways around those concerns and she talks about some very practical ways to make an eye test, a much less scary experience for our children.

I hope that after listening to Antonia that, like me, you’ll be reminded of the importance of sight in the big picture census and getting any vision issues sorted can have a massive impact as she explains. In the latter part of that conversation, we chat about relationships.

Antonia has written a book called Special Needs Child: Maintaining Your Relationships. I would be citing the pretty obvious, if I told you that having a child with additional needs isn’t easy on any relationship. It’s not easy for the entire family and it’s obviously not easy for the child and it’s not easy to spend time on maintaining relationships while dealing with everything else that’s going on. It’s going to put a strain on any relationship even on the strongest of us because it’s often the daily rollercoaster.

Thinking about the future isn’t always easy but it becomes really necessary to plan and hit everything. I’ve kind of accepted now that we weren’t necessarily have that emptiness that some of my friends will have and I know some people would say, “Well that’s not a great thing anyway when your children leave home.” But basically, when you have a child with additional needs, it’s a very different family life cycle.

DEBRA: This week, we’re talking to Antonia Chitty. Welcome, Antonia!

ANTONIA: Hi, there. Thanks for having me.

DEBRA: Tell us a little bit about your background.

ANTONIA: Okay, so I started off as an optometrist but once I had children of my own, I started writing books. So, I’ve written a number of books on special education needs; one on down syndrome, a book called What To Do When Your Child Hates School, which is, you know, it talks out a lot of the issues that come up for people whose children aren’t gonna fit into the mainstream. Some books about special issues like food and sleep which often an issue for people whose children has got special needs.

And also book for parents of special needs children called Special Needs Child: Maintaining Your Relationship because again we understand that every parenting relationship has stresses. If you’re battling your local authority or trying to get the healthcare your child needs, that can really take its toll. So that’s where that one came about.

I’ve co-written most of these books with Victoria Dawson who I’d rather you’re gonna be speaking to soon who’s teacher and a sleep specialist. So, we’ve interviewed a lot of people for these books. We’ve used our own expertise and we brought in another other people’s expertise where we’ve needed it.

DEBRA: You’ve mentioned your background is an optometrist, have you written about that?

ANTONIA: Yes, something that maybe parents don’t know is that children with additional health issues, additional needs also are far more likely to have eye problems. 2 and 3 of them are likely to have an eye problem. Some people can be daunted about taking their child just for an eye test. So, I’ve also done work in the past with SeeAbility who are a great charity and they’ve been doing a lot of campaigning to ensure that every child gets access to an eye test.

Children don’t need to be able to read to have their eyes examined and if your child doesn’t communicate at all, the optometrist can examine their eyes, they can use different lights to measure whether they’re likely to be long or short-sighted. If your child uses different communication systems, again just a bit of preparation back in work, there are pictured charts.

There’s something called Preferential Looking which is a test chart where’s a picture on one part of the chart and not on the other and by holding it up, the optometrist can see if you’re child’s eye goes towards the picture which is natural thing that they’ll do or it’s just randomly looking at both half of the cards equally. So, by using smaller and smaller pictures, they can tell at what point they lose your child’s interests, at what point they can no longer see the pictures on the cards. So, there’s lots of different things that can be done, getting every child with the right spectacles on a well-fitting pair of spectacles is something that I’m passionate about. There are a lot of opticians and optometrists out there who are very keen to do that.

If you’ve been through the hoop of getting an eye test and you’ve got your child’s specs but they’re not staying on with it or like keep slipping down. That’s quite normal. I think again what parents need to know is that it’s okay to keep going back to the opticians. And they will keep re-adjusting them and sometimes it may be that the frame isn’t right and maybe you need a different frame or headband. There’s lots of different things that can be done. So again, you know, I’m just passionate about getting children’s eyes looked after because then they can really fulfil their potential. You know, hopefully parents will feel supported.

DEBRA: What do you think the reasons are that they get me missed then? Because it’s 2 in every 3. [Yes.] How are the children missed?

ANTONIA: It’s lack of knowledge and definitely a lot of children are missed, it’s lack of communication on many levels. People think if they’re child can’t communicate then they can’t have an eye test. Opticians need to do a better job of explaining what they can do. SeeAbility are working with special schools so that an optician and an optometrist, (so the optometrist does the eye examination, the optician does the spectacles) they go into the schools. So that they’re there one day a week and kids who need to test, everybody gets a test in every so often. The optician will walk around the school and if somebody is broken aspects or there’s falling down, they will be there to sort it out.

One of the barriers for parents is getting their child to an unfamiliar setting. Let’s take the eye care to the setting that the child is already comfortable in and I think that’s a really positive way forward.

DEBRA: What would you recommend to parents then who think that their child might have an eye issue but they’re non-verbal. They’re not able to communicate. What kind of things should they be doing?

ANTONIA: Right. Definitely start asking around other moms and dads, “Have you had your children’s eyes tested? Is there a good optician that you know? You can contact SeeAbility and they have a directory of opticians who are committed to working with children special needs and there’s also the British Association of Behaviorial Optometrist (BABO). Their members have extra training, so through one of those routes by asking around or by contacting SeeAbility or BABO, you will find there’ll be someone in your area who is good at that sort of thing. I could say you know you could just walk into any High Street optician because they will test your child’s eyes but it’s probably worth doing the preparation first on finding someone who’s dealt with children who don’t communicate verbally.

Because also sometimes an option for getting your child looked after at the hospital but the most straightforward thing is to find a High Street practice. Go in and explain about your child: what’s going to be the best time of day for them to have their eyes tested? Will they want to come in first to check out the surroundings and get used to it? Most optometrists are very happy for a child to come in, have a look and just go. Because they wanted to be an okay experience as well. You might want to talk about what’s gonna go on in the eye test.

SeeAbility and RNIB advise things like you’re using a torch just practice shining a light around your child’s eye. Obviously when the optometrist does it, it’ll be brighter and more intense but just the ‘I’m gonna look at your eye’ experience is quite a strange one. ‘I’m going to come very close to you and look at your eye’ is also something that children don’t like necessarily and it’s not natural to allow a stranger within a few inches of your face.

So talk to the optometrist, look at some of the SeeAbility and RNIB resources about what happens in an eye test and SeeAbility and RNIB both have simplified breakdowns of the different stages. They have some ideas. The opticians gonna ask you to look at something that gonna show a light on your eye is you can run through that at home. And if you’ve explained that maybe you want extra time, maybe your child isn’t going to be responding, maybe a child can do the preferential looking then they’ll be prepared to take out the right equipment and do a test at the time of day that he’s going to work well for you and for them. Maybe it’ll take two visits to get the right results. And maybe after that they might want to order a particular frame that are going to work for your child depending on your child’s posture, whether they use a wheelchair, whether they recline more.

Different frames can be more comfortable. There are fantastic frames out there that are softer, more adjustable, more resilient and the dispensing optician can take you through the best frames, the best lenses if they’re needed. So, it is just really the question of being patient, taking your time, realizing it may take a few visits to get this right and I know that that’s difficult combined with school and work and other children. But it is worth it.

I think the thing that we haven’t talked about yet is the health issues. Children with special needs do have an increased risk of eye disease as well as being short sighted or long sighted. And it’s really important to get that picked up early on. The chances of any one child having an eye disease is very low. But the other some conditions that can cause pain and if you don’t know why your child is always rubbing at their eyes maybe the optician could help work that out.

I’ve seen a number of older people who perhaps have lost sight because they haven’t been able to communicate that they’ve got an issue. It’s obviously something that every parent would really want to avoid that. So, going for an eye test once is a start but yes, the optician will say “Come back in six months or come back in a year or come back in two years if everything seems stable” and that’s just as important.

Also, if your child becomes an adult, setting up a system so that they’re empowered to get the regular checks they need. Because the increasing age increases the risk of eye disease just taken down syndrome is an example. Children with down syndrome may be more likely to get cataract involved in getting cataract in the sixties or seventies or eighties they may be getting in the forties or fifties. So, the ongoing need for eye care is really important too.

DEBRA: You mentioned there a little bit earlier and I guess I’m backtracking a little bit because I wonder if parents miss some of the signs you mentioned rubbing your eyes and that’s an obvious sign. Are there other signs that you would suggest to people to keep an eye out for?

ANTONIA: Yeah, it’s very easy to miss signs because your child is just behaving like your child behaves and you don’t know how they behave if they were different. There are some amazing videos on YouTube of children with quite high prescriptions putting on their first pair of glasses in the world opening up for them. It’s not an easy one but does your child prefer things to be close up? Or do they hate it when you bring things close to their face? If they are very focused on things as are near, they may be short-sighted. If they’re oblivious to things that are going on further away, it may not be just they can’t pay attention, maybe not they can’t see it.

Rubbing and touching the eyes, squinting. Squinting is used for two different things. Squinting is when you screw up your eyelids because they’re uncomfortable then you might squint in bright light, so that’s one sort of thing to look out for and the other is with your child has a squint or lazy eye, whether both eyes point in the same direction when they’re looking at you or whether one eye wanders off to the outer sides or whether it comes in towards their nose. That’s not an easy one to pick up. But sometimes you can see that their eyes are wandering and if you wonder about the eyes wandering, get them checked. Because you know, it’s very often parents to see that.

Her eyes are fine but when she gets tired, one of them drifts out. The health professionals aren’t seeing that at the end of the day when you’re putting your child to bed. That they’re losing focus. So, you know it can be something that only happens at certain times of day. Headaches difficult one to tell, I know. But if your child is distressed and sharing signs of a headache, that can be done to an eye problem but yeah, really, every child should be getting their eyes checked depending on their additional needs every six months, a year or 2 years.

So, if your child hasn’t had an eye tests, definitely start the process. The glasses can actually really help them communicate. If your child uses something like eye gaze, it can improve how long they can use it for and improve the accuracy with which they use it. There are all sorts of things that can really help your child engage with the world to the maximum of their ability.

DEBRA: Do you think that sometimes the eyes get kind of lost in all the other health issues then because people are focused on the obvious?

ANTONIA: Definitely and I know that I’m saying to you when you probably have 27 different health appointments already lined up just to throw another one in there and I know that’s an issue. I’ve got three kids and two of them are having regular appointments at the moment for different things. And it’s difficult. But yeah, it does get lost and there’s this thing if your child isn’t telling you there’s a problem, verbally or non-verbally, it’s easy to ignore the eye tests that have been done when children start school really and not getting done in every area now, so that’s one way of catching children with problems that has fallen away.

It’s something that can really transform a child’s life; being able to see properly. I’m thinking of a case study from SeeAbility of a child who had a prescription of -24. And I know that maybe that doesn’t mean a thing but that’s massively short-sighted. He couldn’t see anything beyond a few centimeters away from the end of his nose. The rest of the world would honestly be a scary blur. Things come up at you and you don’t know where they’re coming from and it’s made such a difference to him having the SeeAbility optician in school. He does break his classes quite often. But there’s always somebody there to fix them and if you as a parent take a while to get your child’s glasses fixed, it can be worth asking the optician just what can they see without them. Because having a spare pair is quite important for a child whose glasses really are their world.

DEBRA: So, it’s almost like if you haven’t done it, go and do it. Because when you just mentioned there about being shocked when someone comes up to you, I’m wondering now if some children, we think they’ve got anxiety but it’s partly because they can’t see.

ANTONIA: It can very much contribute to other issues and yeah if you haven’t had an eye test for your child, do start finding out about it. Some optometrist will do it at a home service, some will come to a school. So, if you think that getting your child to the opticians is insurmountable, that is not a barrier. Ask the optician and again this is back to asking an optician has got a special interest in the area and they will be ready to come out. They’ll bring the different types of testing cards, they have portable equipment and if you think ‘Yeah, it’s really not gonna work having my child tested in this environment’, well there’s other ways around it.

You get into a relationship with a good optometrist, a good optician and they will be a friend to your child for years to come and it really helps them to make the most of their abilities. I think there are some good people out there and they are keen to help. I’m very much aware that it is just one more thing to take on. But it’s worth it.

DEBRA: You mentioned about relationships. Can you give us a little bit an idea of that what that was about? Because I think that’s probably something that’s recurring in this podcast; about parents talking about the impact on their relationship?

ANTONIA: Yes, I’ve just opened the book at the page Why is this book needed? Many parents report that they feel isolated when their child has additional need. They don’t have anywhere to discuss the pressures on their relationship. How parents are getting on together. I think it can be very dividing when one of you is always at the hospital or the clinic, or taking your child to something else and maybe the other one’s having to look after the other children or they’re having to go to work and you both collapse at the end of the day. And maybe one of you is too tired to tell the other one about their day and maybe somebody wants to hear all about it and the other one can’t bear rehashing it because it’s painful. It’s difficult.

We know that coming to terms with the diagnosis can often go through the same stages of grief, loss, depression, anger, bewilderment, and hopefully finally, acceptance as a death in the family. Parents can go through that at different stages so you may be feeling angry about it while your partner is depressed of the latest news at the hospital. You have to cope with that, but you know, you can’t understand why your partner isn’t angry, and they just can’t cope with everything that’s happening all at once and just want to curl in on themselves. It’s a big issue.

There is help out there but again it can take time to find the right person to help. There are services that are setup for marriage counselling but it’s not about the marriage, it’s about all the pressures we’re going through. And I think, what Vicki and I would say from the book is going out and getting the help you can. Acknowledging that it’s taking its toll is one of the things that a lot of people just keep on keeping on and trying to do it all for the good of the children.

But we’ve got strategies for coping with stress and strategies for communication. Strategies to deal with if you’re the person who’s going to all the appointments and you can’t bear to rehash it all for your partner. Well, is it a question of taking notes, getting the professional to write things down, even recording the session so they can feel like that they’re there? They want to know about it but they’ve got to be somewhere else.

And there’s other ideas in the book for helping when there are problems because we know relationships do breakdown and I think I haven’t got the statistics to hand but there are a higher incidents of relationship breakdown when you’ve got this sort of pressure on you. But the other thing we do is ——- on things you can do to actually build the relationship up is not just about dealing with problems. It’s about finding the positive things that keep your family together.

DEBRA: It’s definitely a book I wanted to read, I’m just gonna ask you whether or not you think it’s a life cycle as well that there’s different pressures at different times. Because where I’m coming from, my daughter is getting older and the push is there for her to be more independent. But when you get to the age where… (she just turned 16) it’s a difficult relationship with her but it’s also thinking about the future for her. I mean, that kind of emptiness syndrome which we won’t necessarily get in the same way as our friends will.

ANTONIA: Which is also something that you can expect your children to leave home and then suddenly you’re in a position where they’re not going to. Maybe they want to but it’s not that easy. It’s tricky. And the book I haven’t yet written as I said is the book about what happens next, what happens when your child stops being seen by the pediatrics department, stops qualifying for school or education.

It’s a difficult time. And I think you’re right that the work on maintaining your relationship with your partner is ongoing. You need to get your child setup in a sustainable adult life. And that could take all the years for when they’re 18 to 25 or beyond. And maybe, you see other people with kids the same age on holidays, rediscovering each other. And yes, that brings up things that you have to cope with. It does come in waves.

DEBRA: I think it changes when they have less of a structured of school. You can see that school is like having a job. It’s a purpose, it’s a place, it’s a social network. And when you leave that, what happens?

ANTONIA: It’s an issue and I think parents really worry about that and you worry about ‘What if something happens to me?’ and it’s something that perhaps only other parents in a similar situation can really understand this ongoing responsibility that you feel. And even if you have a situation where your child has moved out into supported living and so on, well maybe you’re still handling their bank accounts.

All these little things: just going around and checking that their washing is done and the things that aren’t being picked up by social care and because parents care and you can’t stop that. So yes, I haven’t got any answers for that one but…

DEBRA: I was gonna ask you about that..Have you got any top tip there?

ANTONIA: No, I think, actually, that’s something that it may be more so if your children have special needs but in fact, every parent goes on worrying. And maybe that’s something to remind yourself that although you need to be more involved in some of the practicalities of life, if you’re lying in bed thinking what’s going to happen. You know, the parent whose child has off on a gap year somewhere is probably also lying awake at night for different reasons and maybe it’s just the guilt that comes with the parenting.

DEBRA: Yes, I think that’s useful to remember anyway, and that there’s a lot to parenting and it’s not only the additional needs that make you the parent you are. [Absolutely.] There are other things too, as well.

ANTONIA: And I think the inability to switch off from being concerned about your child’s future is something that’s common to everybody.

DEBRA: Thank you very much for your time.

ANTONIA: That’s alright.

DEBRA: Key takeaways? Don’t forget your child’s eye sight. If you haven’t had a test done recently, get one done just in case. And find that supported optometrist that it is out there that can help. Take some time to look at other important relationships in your life particularly if you do have a partner. We all need someone to have our back, just like we have our children’s back.

Links
Antonia Chitty
SeeAbility UK
BABO: British Association of Behavioural Optometrists
ACBO: Australasian College of Behavioural Optometrists
COVD: College of Optometrists in Vision Development U.S.A

Books
Special Needs Child: Maintaining Your Relationship: A couple’s guide to having a relationship that works
Special Educational Needs – A Parent’s Guide
Food and Your Special Needs Child
The Journey Through Assessment: Help for Parents with a Special Needs Child
What to Do When Your Child Hates School: How to see your child off to school with a smile again

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