2010-06-22-Raising a Child with ROP

Seminars@Hadley

Let’s Talk: Raising a Child with Retinopathy of Prematurity (ROP)

Presented by Paula Korelitz Jen O’Neill

Moderated by Debbie Worman Debbie Siegel

June 22, 2010

Debbie Worman Welcome to Seminars@Hadley. Our seminar topic for tonight is Let’s Talk Raising a Child with Retinopathy of Prematurity. The Hadley School for the Blind is happy to have all of you join us for tonight’s discussion. Retinopathy of Prematurity (ROP) is a disorder of the blood vessels of the retina that occurs in some premature babies. In general ROP is a disease affecting the youngest, smallest and sickest infants. Typically this includes infants born earlier than 32 weeks of gestation and weighing under 3.3 pounds - the smaller and more premature the

In tonight’s seminar we will focus on teaching strategies and resources for raising a child with ROP. We will not be discussing the actual medical condition itself. My name is Debbie Worman and I will be moderating this seminar. I am an instructor with Hadley. Two of the courses I teach are You, Your Child and Your Community and Learning Through Play – both available in Hadley’s Family Education Program. Joining me to help with moderating duties is my colleague, Debbie Siegel. Debbie, would you pop in and introduce yourself?

Debbie Siegel Hi, I’m Debbie Siegel. I teach Introduction to Braille. I also teach the Abacus courses and both of these courses are offered in the Family Education and Professional Programs. Hadley also has a partnership with Utah State University and I teach a college level course called The Role of Parent Educators Working with Blind or Visually Impaired Children. This course is also open to parents and professionals. And, Debbie, I’ll turn the mic back over to you.

Debbie Worman

Thank you, Debbie. And I appreciate your moderating the text messages tonight and relaying questions and comments for those who are texting. Presenters for our seminar are Paula Korelitz and Jen O’Neill. Paula is an experienced vision teacher and she is the current Outreach Director for the Association for Retinopathy of Prematurity and Related Diseases and that’s more commonly known as ROPARD.

Jen is a student in Hadley’s education program and she is the mother of Camille who was born 25 weeks premature. Camille has severe ROP. Hadley is very pleased to have both Paula and Jen sharing their insights and personal experiences during tonight’s seminar. As I know both of our presenters quite well, I personally feel you will find their comments beneficial and enjoyable.

Currently I am seeing we have 32 participants in attendance and we have parents of children birth to 3; some adults with ROP; and we have professionals who are listening tonight, as well as parents who have older children with ROP. So it’s very exciting to see we have a range of participants.

A quick reminder that this seminar is indeed being recorded. Within a few days you will find an archived

©2011 The Hadley School for the Blind Page 3 of 55 2010-06-22-Raising a Child with ROP version of the seminar, along with past Hadley seminars on Hadley’s website which is www.Hadley.edu and Debbie will text that email address in the text box. Tonight’s format will be an informal discussion. While I have prepared a list of questions for Paula and Jen, we truly want to hear from you. During our discussion we hope you feel comfortable asking your own questions, either by using your microphone or texting. You do not have to wait until the end of the seminar to ask your questions; we want you to feel like Paula and Jen are in your home, talking with you. So let’s get started. Let’s talk about raising a child with Retinopathy of Prematurity. Paula and Jen, would you start us off by sharing a little bit about yourself and how ROP is a part of your life? And, Paula, why don’t you start?

Paula Korelitz I was a state instructor for both Insight and Visa and I, fortunately when I retired from Detroit Public Schools, was asked to work with Dr. Michael Tracy and become the Outreach Director for ROPARD and it has been a true blessing for me to be able to do what I love to do and do it with a marvelous team of doctors.

Jen O’Neill

I’m going to go ahead and chime in here. I’m Jen O’Neill and I’m going to tell you just a little bit about myself and my daughter and I kind of want to just put some information out there about our background so not only people that are on, but also people who might listen in the future feel like if they connect or relate to our story somehow can feel free to contact me any time cause I know as a parent it can be pretty daunting when you don’t know what you’re doing when you get a new diagnosis.

I see people on this list that have helped me in the past and so in a way I feel like I’m speaking to the choir in seeing some of these names, but I do want to give a little background and share some of my insight in our six years of dealing with ROP as a parent and as a family.

My husband, Bill, and I live in Omaha and we have three children. Camille is coming up on six here pretty quick and we also have a daughter, Olivia, who is four and a son, Jack, who just turned one. Camille was our preemie – she was born at 25 weeks and two days with ROP which turned out to be a very severe and aggressive case despite treatment. She was born at 1 lb. 13 and was in the NICU for 11 weeks which really is pretty good considering she was born so early and so small.

We actually were home by the time her ROP started surfacing and we had about a week at home and realized that it was really flaring up and a week after she was discharged she had her first laser surgery to try to keep the ROP at bay and it ended up not working and she ended up hemorrhaging into her eyes at which point we went up to Michigan to see Dr. Tracy and that’s how Paula came into my life.

And she’s had a total of I think nine surgeries. After her two laser surgeries she had one vitrectomy in her better eye; three in her eye which didn’t ever end up having any vision and now is considered a low-vision child and is pretty much a dual-media learner in every sense of the word, although Braille I think is going to end up being her more stronger way of learning. She has some mild Cerebral Palsy in addition to her ROP, and that affects mostly her gross motor skills but that was the result of a brain leak she had in the NICU, so that’s kind of our story in a nutshell.

Debbie Worman Thank you, Paula and Jen, for sharing a little bit about yourselves and letting the participants get to know you a little bit better. I’d like to start the questions off. I’ve always been curious - I’ve worked with a lot of parents in the Family Education Program. What’s it

©2011 The Hadley School for the Blind Page 6 of 55 2010-06-22-Raising a Child with ROP like to be the parent of a child with ROP and Paula, you can answer this from your perspective. What do you see with families that come to see you at the center? What are they coping with? What are some of the issues they have?

And Jen, maybe you can address some of the day-today challenges and also the celebrations that you have with Camille; how you balance your roles and such. So I’d like to throw that question out to Paula first.

Paula Korelitz Well, I think the thing that I notice most frequently is that very few parents that come to our center have ever met anyone who’s blind and so their perspective of blindness is one where people really need a tremendous amount of assistance just to survive. And so that’s a key issue for us to talk about and explain the difference between helping your child and helping your child too much so that your child becomes dependent instead of independent. So that’s, I think, one of the key issues.

And then I also think that it’s really important for parents to connect with other parents and thank goodness for the internet because now there are so many ways for parents to connect. But my primary

©2011 The Hadley School for the Blind Page 7 of 55 2010-06-22-Raising a Child with ROP resource has always been Hadley for the parents. That’s pretty much how I perceive that very early part and if you want any more specific questions, I’d be happy to answer them.

Debbie Worman Jen, why don’t you jump in and share your perspective and then maybe we’ll open the mic up if there are any questions. So, Jen, why don’t you go ahead with that question?

Jen O’Neill I just want to build on what Paula had said first of all and kind of leading up to that, ROP is kind of unique in terms of raising a child with a visual impairment I think because of the circumstances that lead up to it. And they say this so you’ll kind of understand where ROP parents are coming from if you’re an educator or if you’re a person who happens to be living with ROP or if you are a parent yourself.

In a different group that I am a part of, there’s kind of this resonating theme among parents that the ROP diagnosis is kind of the exclamation point at the end of this NICU ride that has already happened which is one of the most surreal experiences in this day and age that I’ve ever had and it’s just really a series of moment-to-moment up and downs that I just don’t even think you realize what you’re going through at the time until it’s all done.

And for us it was kind of like once we had gotten out of the point where we felt like we could take a breath;

©2011 The Hadley School for the Blind Page 9 of 55 2010-06-22-Raising a Child with ROP then we got the ROP diagnosis. So it was kind of the statement at the end when you thought you had survived everything. And in some cases, I have met many parents who’ve been told this – assured that everything is going to be okay with a little laser surgery.

So my personal experience and my husband’s experience is that we had never met anyone with a significant visual impairment and what Paula had said is, I think, very true for us in that for us it was scary and I will be the first to admit that because the only knowledge we had was our imagination, and being sighted people who are very dependent on our sight, what we envisioned visual impairment or blindness as was what it would be like for us if we, as people dependent on our sight, had lost it.

And in that way, I think it’s very important that parents get a lot of support from each other and from people in their lives, from maybe adults who are living out of the visually impaired individuals to know that it’s going to be okay and these kids can do lots and lots of things – everything that… I say that carefully because the NICU… I’m going to backtrack a little bit – because the NICU can leave you with a lot of unknowns and I think ROP is very hard for some

A lot of the times people say your child can do anything. Your child can do lots of things and you can accomplish a lot together, but in being sensitive to some of the problems that can come out of the NICU too, there are a lot of things that are hard and there are a lot of unknowns. But that part of the uniqueness of living with a child that comes out of the NICU in this day and age is that these babies are very small and very fragile and often have lots of other things going on and it’s very hard as a parent to sort out.

Is this the vision; is this the prematurity; is this the brain bleed; is this something else? And it’s a very huge growing and learning experience – a delightful one, I will say. I won’t say that it’s the easiest thing I have done – it’s definitely the hardest – but definitely the most rewarding thing I have done. And we all have beautiful children that come out of this. But there are triumphs; there are things that are hard; there are days that are rewarding; there are days that are tough and it’s a very great journey and I am a better person for it and I have a beautiful daughter. But it has required me to come out of my shell in more ways that I’ve ever imagined.

Paula Korelitz I just want to add one thing. One of the things that make ROP different from other eye pathologies is that great degree of prematurity and it also differs from both other kids who are premature and other kids who have a vision impairment that is a genetic impairment. Most developmental pediatricians are going to say that a preemie should catch up with their peers at about two years of age and we know that ROP babies don’t do that.

It’s closer to six years of age for many of them and that’s because they have surgery after surgery after surgery and with each surgery there’s regression. And another issue also is that many parents take that baby out of the NICU thinking their baby is absolutely fine because they’ve been discharged and then when they go for their first well baby visit to their pediatrician, lo and behold, the pediatrician says to them, “There’s something wrong with your child’s eyes and you need to see a pediatric ophthalmologist.” And that’s an issue all over the world, not exclusive to any country. It happens here in major cities in the U.S. too.

Debbie Worman Thank you very much. It’s good to hear both perspectives and, Jen, especially from a parent to

©2011 The Hadley School for the Blind Page 12 of 55 2010-06-22-Raising a Child with ROP know what you were feeling. I’ll let you know that one of the text messages that came through while you were talking was from Darlene and she said, “Amen.” So I think other parents who are listening are in agreement with you and the professionals have some good information as they work with parents.

At this time I want to open up the mic to participants for questions. Please ask questions about developmental concerns; if you have early intervention questions; if you have educational concerns; if you have any questions about any technique you’ve heard about such as Active Learning; anything about IEPs. I’d really like to hear what questions the participants have and Jen and Paula would be very happy to answer them. So I’ll open the mic to our participants now and to our texters.

John Hi, my name is John once again. I’d like to know if your child, Jen, had any developmental delays. I was diagnosed with ADHD at the age of 18 and I developed a mental illness at the age of 18 because of my ROP. I attended the Atlantic Providences Special Education Authority Resource Center for the Visually Impaired in Halifax. That was the only place that was equipped for me and unfortunately I found it

©2011 The Hadley School for the Blind Page 13 of 55 2010-06-22-Raising a Child with ROP really hard being home at a young age. And I’d like to know – was your child in a public school from the get- go or did she have to go to a specialized school for visually-impaired people? Thank you.

Jen O’Neill Hi, John. Yeah, my daughter Camille is just turning up on 6 so she’s going to be 6 and will be in first grade next year, so we’re kind of just starting out with our school journey. She just finished her first year of kindergarten in a mainstream school in our public neighborhood school. Prior to that she had two years of pre-school to get services for vision and start in her pre-Braille skills and that, here in Nebraska anyway, is part of the early intervention, kind of meshes right in with the public school system in a pre-school type environment.

So we’ve been part of our school system since she was about four months old. Developmental concerns – that was one of your questions – she’s had many right off the get-go and as Paula said, it’s hard to sort out sometimes what all of that was. She was very premature of course so she started out a little bit behind. Her CP – which she does have a mild to moderate form of – now that we are looking back, we know that that probably did cause a delay in walking and some of her gross motor skills.

This is one of the most important things and it was huge for me to have resources like Paula to lean on as she was going through her surgeries because for her first year of life, for a while it was every week or two weeks she was going under anesthesia or having a procedure. And she ended up having, I think, eight surgeries that first year, and between the ages of 18 months and three years, battled glaucoma very badly.

And there was the summer when she turned two that she spent a lot of time literally huddled down on the floor because she had significant pain and when we came out of that and finally got that under control, it was finally then that she really started to come out of her shell. That was before she went into pre-school and it was really hard for us as parents to try to articulate how much of a toll I think all of that had on her. And looking back now, our gut instincts were right.

Once she started having these insults to her system, if you will, she really started blossoming and really came into her own in pre-school. She’s a very bright little child that does really well. She very determined; she’s extremely happy; she tries anything and she’s a delight. Not to say that there aren’t obstacles that we face, but she is out to conquer. And so I hope that

©2011 The Hadley School for the Blind Page 15 of 55 2010-06-22-Raising a Child with ROP answers your question a little bit. But, yes, there were developmental concerns and it’s impossible, I think, to pick apart why other than she just had a pretty large blow dealt to her when she was born and then had some complications from the ROP in terms of her eye disease as well.

John I want to thank you very much, Paula - that was a great explanation. I’m an adult, as you know, and I was in the NICU for seven months and I only weighed one pound, 11 ounces so that’s where I come from. And I also had CP in a mild case as well and I developed trouble with my gross motor skills as well, so I understand exactly where you’re coming from from that point of view.

Debbie Siegel Thanks, John. There’s a comment on the text from Jody who wrote in while you were talking that says, “I’m a 57-year-old adult with ROP; I’m here to be the crystal ball for the parents to tell them that their kids will grow up and be just fine.” So, Jody, thank you for your comment.

Paula Korelitz I just want to comment to Jody that I talk about Jody quite frequently to parents because Jody, on the

©2011 The Hadley School for the Blind Page 16 of 55 2010-06-22-Raising a Child with ROP listserv that she’s on that I work on, has commented that she was a print reader when she was a child and as an adult learned Braille. And I strongly urge all the parents that come to our center to expose their children to both print and Braille because they soak it up when they’re little munchkins.

Patti I am a 56-year-old adult with ROP and I can speak from a historical perspective. When I was little – back in the Dark Ages – we didn’t have the various medical and surgical interventions. I don’t think they were doing vitrectomies and stuff like that back then, and I don’t know if that’s good or bad. We just kind of rolled with the flow and adjusted to the condition that we had, and an eye doctor at one time said to my mom, “The best thing you can do is don’t hope for miracles, but think about education.”

And I have two quick questions. I don’t care who answers it, but is it common for ROP people to lose their vision due to glaucoma? The second question is if somebody could address ROP issues in terms of orientation and mobility. I’ve heard that sometimes there are some real spatial problems.

Paula Korelitz Okay, here’s my answer to the first part. Any child born with ROP should be followed closely. Those children are more likely to get cataracts and glaucoma at young ages than the rest of the population. I’m sorry. I forgot the second question which is how my mind goes, so if you want to pose it again, I will try to answer it.

Linda That was the O&M question and I’m Linda and I wanted to talk about it because it’s one of my favorite subjects. I’m a little older than Patti and my parents had something that was actually a stroller that could be converted into a walker and it was much heavier than the ones that are sold nowadays. And that’s what I got around in because I had CP too; I didn’t walk till I was two and something because I had some things done to my Achilles tendon.

This walker that I had really allowed me to start getting around by myself and getting into things by myself at the age that a sighted child would have. And I think that some of the problems with ROP kids and mobility has to do with the fact - sometimes it can be a brain problem – but sometimes if the parents don’t know that they should let the child explore in whatever way they can, then the child doesn’t pick up orientation normally and think about moving around in a normal or semi-normal way.

Paula Korelitz Linda, you’re absolutely right. I think again that goes to parents being overprotective and instead of expecting their children to be independent, they kind of create a dependency. In terms of the spatial

©2011 The Hadley School for the Blind Page 19 of 55 2010-06-22-Raising a Child with ROP awareness, I believe that the spatial awareness is a problem again of not allowing your child to experience the world around them and if you start out with a little room when the child is just an infant, it creates some awareness of spatial relationships. And also I’m a strong believer of early introduction to a cane. So as soon as a kid is able to walk, I would urge the use of a cane or a pre-cane.

And Joseph Cutter’s book about orientation and mobility is one that I think is extraordinary. We can also talk about how a parent can introduce a cane to kids even before the kid is able to walk, if we want to discuss it at a later time.

Debbie Siegel Hi, I’m going to break in with a question we’ve got here. It’s a child who’s presenting patterns like tapping or hitting her head when she’s upset and they’d like to learn how to communicate with her. She’s got multiple disabilities, ROP and she doesn’t speak and she’s got developmental delays.

Paula Korelitz Well, I think part of that is frustration in not being able to communicate and I would certainly try some sign language with a child like that. I would make sure that that child always has something on her body so that

©2011 The Hadley School for the Blind Page 20 of 55 2010-06-22-Raising a Child with ROP she has something to play with. I would also make sure that there’s a lot of movement activity for that child because I think that tapping or head hitting comes, again, for not having enough sensory input. So those are things I would do. In terms of hitting her head, I wouldn’t hold her head to stop the hitting; I would put a pillow or something soft between her head and what she’s trying to hit her head with.

Laurie Hi, this is Laurie in response to that question. I have a child that I work with; he’s six years old. I started working with him 2½ years ago. He’s deaf and blind. When I started he was wearing a helmet all the time because he was doing the same thing – hitting his head, anything he could grab he would hit his head. He had no language at all. I would sit down and start giving him signs – my background is actually as a sign language interpreter – and I would give him as many signs as I could.

And now, 2½ years later, he is communicating in full sentences, grammatically correct, making spontaneous requests. It was really incredibly helpful and has made a big difference in his life. He does have multiple disabilities. He didn’t walk until he was 3½, almost 4 years old and he had some cognitive issues. Now he’s doing so much better. When I first

©2011 The Hadley School for the Blind Page 21 of 55 2010-06-22-Raising a Child with ROP started with him they told me that if he had five useable words by the time he’s 21, I’d be lucky. Here he is – 6 years old – he got awards this year in school. He’s doing amazingly well.

Debbie Worman Thank you, that is an amazing story and we appreciate your input. Paula, earlier you had mentioned something called the Little Room and I think it would be helpful if you want to take some time to discuss that since we’re talking about children with additional disabilities.

Paula Korelitz I’ve always said that if I have a little room for my own kids and grandkids, I would have used it for them. It’s one of those things that is such an innovative tool that it’s hard to believe that it didn’t happen before. But the Little Room was created by Dr. Lili Nielsen and her intent was to use it really with children with multiple disabilities, but as I said, I would use it for any kid if I had one.

It sits on a resonance board, a board preferably made out of birch plywood that has about a 1” lip so that the board doesn’t sit flat on the ground. And the Little Room is a cube with one open end and it can be made into several different figurations. The top has a

©2011 The Hadley School for the Blind Page 22 of 55 2010-06-22-Raising a Child with ROP piece of Plexiglas with hole in it and distending from those holes are items that appear to be junk and the reason they appear to be junk is because they’re not toys, but it you think about toys nowadays, virtually everything is plastic.

So if I have a child who needs to learn how to refine their tactile senses, then if everything is plastic, you’re not learning a lot. So for instance, in ours we have different kinds of brushes, we have paper, we have wood, we have metal and it looks like they’re in there randomly, but they’re really not. We try very hard to balance right and left so that if there is a prickly item on your right hand, there’ll be a prickly item on your left hand, but they’re going to be different. The texture is going to be different so the child learns not only spatial awareness from that, but also refinement of their tactile sense.

And I just want to put in – in terms of resources, if I were the parent of a child with multiple disabilities, one of them being blindness, I would really make an effort to make it into Detroit to go to Penrickton Center and it is, I think, the foremost center for active learning which is what the Little Room is based on, in the United States so that you could see all the tools that Lili Nielsen developed for kids who are blind with other disabilities.

Jen O’Neill I just wanted to chime in here and say that we first got a Little Room when we went up when Camille was about four months old and Camille had her first trip to Michigan and we stopped in the ROPARD Center and talked to Paula and fashioned a Little Room for Camille where we did just build it with all the stuff we could find that had any sort of tactile sense to it – things that were wooden; things that clicked; things that chimed – anything like that.

And it was a great experience for her in that we could put her in there and you would start to see patterns where she would find the things that she liked the best and go back to them and I think it really did lay a good foundation for her as far as not being afraid to touch things, not being afraid to explore, feeling safe, feeling like she had a place where she could be safe and learn how to explore. I don’t know how much of that plays into how she is today.

I think there’s probably many factors that – going back to that issue of being overprotective – it’s something that I really took to heart from Paula and from lots of the adults that I saw or didn’t see, I heard from on the listserv really encouraging me not to do that. And we’ve really made that a point with Camille to not be

She had significant balance issues were especially good when she was smaller because of her CP and will fall and get right back up again; will explore, knock her head, get right back up again. There are limits – you have to be safe but as parents you kind of set the tone for how your child is going to learn to react to certain things too. And that’s one of the things that even her P.E. teacher says today is that she’s a kid who, looking at her and knowing her background and seeing her on paper, you wouldn’t think that she would be willing or able to try some of the things that she does.

But she is pretty fearless as far as exploring goes and for that we’re pretty grateful cause once you get into that pattern where it’s really hard to get over fear and to get over sensations, I think it’s harder to get out of. So I think it’s a good thing to encourage with kids early is to explore, get your hands on textures, try out different things, be imaginative with your toys.

Much of what we had were like long balloons strung together on a stick, whisks with bells inside – things that were totally just things you could find around the house, but could find in a aisle that you shop for pet

©2011 The Hadley School for the Blind Page 25 of 55 2010-06-22-Raising a Child with ROP toys, things like that. So getting your hands on those things early and helping your child learn to safely explore the world and build that confidence I think was really helpful with us.

Debbie Worman Jen and Paula, this is Debbie Worman again and one of the questions that I’d like to make sure we address tonight is could you tell us a bit about some of the support that you find helpful for parents? What are some of the support systems that you have found valuable? So if you could address that question in whatever order you want, Paula and Jen. Thank you.

Paula Korelitz Well, as I said earlier, Hadley is definitely one of the supports that I always refer families to. I always encourage families to join parent groups; I always encourage families to join listservs. I think it’s really crucial for parents to understand that they can get a very different perspective from other parents - which is why we wanted Jen on this seminar tonight – than they can from professionals; we don’t live with that child and so we may have a lot of book learning, but we don’t have that intuitive understanding of what another parent is going through.

The internet is absolutely amazing. Ten years ago, if you had a child who was born with any kind of problem, but especially either a vision loss or a hearing loss, the chances of you being able to communicate with another parent was slim to none. And now you can do it daily and actually form friendships that last a lifetime because of the internet, and I think that’s truly amazing.

John Are there any adult internet lists for adults with ROP available in Canada or anywhere else?

Paula Korelitz It doesn’t matter where you live. If you have access to the internet, there are lists that are adult ROP lists, but there are also a lot of adults that are on the ROP listserv that Jen is on and there are many adults on that. I think Jerry is on that one and I know Jody is on that one where they share information with one another too.

Jen O’Neill I want to reiterate the listserv thing. It’s a great way for parents to find connections. I personally learned a lot when Camille was first diagnosed from being on the listserv and it was a place where I could just learn and ask questions as they came up. It was a huge resource for me when we started having what we suspected were problems with Camille’s glaucoma and things like that because we learned a lot from adults who had lived with glaucoma in that way.

And I think that kind of one of the major things I would recommend to any parent is no matter if you think you need support or not, when you’re raising a visually- impaired child, you do and that’s because it’s rare. I

©2011 The Hadley School for the Blind Page 28 of 55 2010-06-22-Raising a Child with ROP mean, it’s a low incidence disability for children and having other parents to connect with, having other adults to connect with, having other professionals to connect with that know visual impairment is invaluable because otherwise there’s a lot to sort through, especially in the educational system that’s hard because people just don’t know about visual impairment, especially if your child is in a mainstream setting.

As far as some of my favorite resources – I’m kind of a Hadley junkie – I’ll admit it and I think just the early childhood classes were invaluable for me if you have parents or if you are a parent that is looking for some creative ideas about helping your children, about fostering some of that developmental stuff. And I can’t say enough about the Braille thing which we is what kind of we have been talking about before and I wanted to comment on.

If there’s even an inkling that your child is low vision, I think Braille, as early as possible, using print alongside of it – like in our case, if that’s still an option – is the best way to go. We’ve got a captive audience right now with our 6-year-old and although she prefers to use her print now, it’s obvious to us that as time goes on it’s going to be probably harder for her in terms of fatigue and that sort of thing and Hadley is a

One of the things that I think has been important to us is that the things that we want her to do, we model that as well. So it’s been a huge resource for me in terms of learning Braille because I want to be able to show her that it’s important enough to us to learn as well, if that makes sense.

The Jewish Guild for the Blind actually has a whole host of support groups for parents – ROP being one of them – and I think at the end Debbie Siegel has a number to reach Dan Callahan there, but it’s a free service for parents who have a child with visual impairments where we can get on, share resources, bounce ideas back off of each other, share joys, share frustrations, talk about how to approach problems and that sort of thing.

Because if your child especially is in a mainstream setting, not by anybody’s fault but just by the rare incidents of visual impairment, it’s going to take some thinking outside the box and some extra advocacy to get them what they need and deserve in the school system.

Jody

Hi, it’s Jody from Ontario, Canada and I just wanted to comment on your statements, Jen, earlier. I think one of the key things that has been very successful for me to work with parents of children with ROP is that idea of not being overprotective. I know you have this little bundle of joy and you want to keep it safe, and what I found is often the children are often kind of the opposite of what their parents are at where they want to explore, they want to do things and they want to learn.

And so when we’re able to break down that barrier and teach them active engagement, independent learning, creating opportunities where the child can be independent, there’s often a major progression in their development and learning. So I just wanted to comment that you sound like a parent who really wrapped your mind around it and did everything possible to help your child, Camille.

As well, the other comment is with some of the websites and connections, I just wanted to mention to the gentleman from Canada that he also can contact the CNIB and they can also assist to try to connect him with people locally who may be adults with ROP living in Canada or within his region.

Tina

Hi there. This is Tina and I have a few comments. As far as support organizations for parents, not giving the whole list, but there is the National Association of Parents of Visually Impaired and the National Organization of Parents of Blind Children. I believe one is with the ACB and the other one is with the NFB but they actually usually have seminars on the days before their conventions in the summertime where they bring in people with expertise and children who are blind or visually impaired. And that’s actually once where I met Joe Cutter and that was totally fun because I’m just thrilled with the kind of stuff he’s doing.

Another thing I was going to mention is well, I had a fun childhood because my dad was a mechanical engineer – he got his degree in mechanical engineering – and so my parents did things like make this little board – maybe – oh, I don’t know how big it was back then – maybe 2 inches by 3 inches – and they drilled holes in the board so that we could lay marbles on them and they’d stay situated so that we could make Braille letters and things like that. And I just remember that was one of the funnest things I think I had around and I just would always be playing with it and making different letters and stuff.

And it was neat because when you rolled your hand against it, the marbles rolled and it kind of gave you the sensation of the whole tracking thing in terms of fluidity of movement. About the Braille thing also, my mom actually learned Braille before I did so that her rationale was that she wanted to teach me how to read just because she taught my other two siblings how to read and she wanted to be involved in that same process.

Some of the things that she did were she made me a notebook of tactile pictures where she for instance cut a round piece of felt and made some little stripes on it and wrote the letters b-a-l-l in little felt dots below it and that was… I just remember so many neat things like that they did and I just think it’s imperative that as parents, people become involved with the education of their children no matter who they are, but especially if they’re blind or visually impaired to show them different aspects of the world that they might not know exist quite yet and just to have fun with it.

Debbie Worman Thank you everybody for sharing such wonderful ideas and offering everybody support. And it’s really nice to hear from the adults with ROP and their memories of what their parents did with them. I think it sends a clear message to parents that every little bit

©2011 The Hadley School for the Blind Page 33 of 55 2010-06-22-Raising a Child with ROP empowers your child. I am watching the time because that’s my job as moderator and believe it or not, it’s already 7:25 and unfortunately, we’re going to have to wrap this up. We maybe should have had this as a longer seminar and we have lots to talk about.

But I’d like to bring the seminar to a close and by doing so, I would just like to remind everyone that this seminar is available on Hadley’s website and Debbie Siegel can type that in again – what the Hadley website is – and then there will be a Resource List. So we’re going to include all the helpful resources that everybody suggested, as well as our own. There will be websites, organizations, those listservs and books that we’re going to have posted on the Hadley website and please take the time to check them out.

And while you’re there, please check out Hadley’s other seminars for topics of interest. You may wish to follow up today’s discussion by enrolling in a Hadley family education course, some courses related to issues we discussed are You, Your Child and Your Community; Beginning the Special Education Journey; Learning Through Play; Early Independence and Introduction to Braille.

Parents of older children may enjoy Contracted Braille or Abacus and professionals are most welcome to enroll with Hadley and may enjoy taking Learning Through Play; Early Independence; Braille and the Abacus. And who knows – she might become a Hadley junkie just like Jen. So you can check out all of Hadley’s programs and courses on our website.

Thank you all for participating today. Don’t sign off yet, however. We do value your feedback. Please let us know what you thought about this seminar and please suggest future seminar topics by sending an email to [email protected]. Let us know what times are good for seminars for you. This was an experiment, an evening seminar. Let us know if that works. At this time I’d just like to briefly hand the mic back to Paula and Jen for any final words of advice that they may wish to share. Paula?

Paula Korelitz Well, after the official close, I would like to respond to Louis’ from Brazil’s question, so if you want to hang on and talk about restoration of vision, that would be great.

Debbie Worman Jen, did you have any final words of advice for our participants tonight?

Jen O’Neill Parents out there, I think just one of the things that I’ve learned the most from being a parent to Camille and from other people is that – Paula and I were talking about this the other day. It’s scary as a parent if you’ve never experienced visual impairment when you first get a diagnosis. But when it all comes down to it, it doesn’t bother the child. They are happy no matter what as long as you create that atmosphere and that confidence that they can do anything that they set their mind to as long as you support them and love them.

It’s a lot of fun. Somebody said it is a lot of fun, and for me I have seen the world differently because I have a daughter who has taught me a lot about joy and about being able to learn in the way that’s best for her. I’ve become a better person and I think see the world better. So that’s all I have to say.

Debbie Worman Thank you. One of my most favorite quotes from Jen appears on her journal that’s on the ROPARD website and she says, “When in doubt, treat her like any other little girl and she will do just fine.” That’s always been one of my favorite quotes.

I want to thank Debbie Siegel for moderating with me. A huge thanks to both Paula and Jen for sharing their time and insights. Both Paula and Jen have agreed to stay on with us after the seminar so after I finish the recording, Paula and Jen are going to stay on and they’re going to take some of your questions. We can continue our conversation. So if you want to follow up with them, if you have questions, just please stay in the seminar room.

Once again, Hadley would like to thank you all for joining us for Let’s Talk Raising a Child with Retinopathy of Prematurity. I encourage you to watch for future seminars at Hadley and I’d like to say take care and good night.

Paula Korelitz At this juncture I would not say anything would never happen because technology is so amazing. The work that’s being done now is primarily being done with two groups in terms of vision restoration. One is a group called Leber’s Congenital Amaurosis and the work that’s being done there is gene therapy and it has been successful.

And the other work with artificial vision has been done with people with retinitis pigmentosa and they are especially good candidates because they have

©2011 The Hadley School for the Blind Page 37 of 55 2010-06-22-Raising a Child with ROP always had some vision and their field of vision narrows to a pinpoint sometimes, but they could have very good acuity, even in that pinpoint. And so they have visual memory which means that when somebody puts a device in their head - that functions as the camera that their eye doesn’t have; then they have a visual memory of it.

And the reason that that is important is because this is really a joint venture between the eyes and the brain and the brain is a very unique organ in that if it realizes that it’s not being used in a certain area such as the eyes, it will literally turn itself off in that area and use the capacity that it had originally devoted to vision for something else, perhaps enhanced hearing or enhanced touch – we don’t know exactly – but we do know that it will turn it off.

I always say to families that probably within the child’s lifetime – I hope in mine – but certainly within the young children we’re seeing now, within their lifetime, artificial vision will probably exist. The problem is whether the child is at a point where the brain has already turned off that part where it’s being used for vision which usually happens somewhere around 8 to 10 years of age.

The book that I always refer parents to is a book called Crashing Through and it is a biography of a man who did have his vision restored and he technically had 20/20 vision, but because his brain wasn’t interpreting what he saw, that vision wasn’t useful. I hope that’s helpful, Louis, and I’m not telling you to give up hope. But I am telling you that the age of your child is probably a crucial aspect as to when or not artificial vision will be useful.

Caller Hi, I have a question for I guess anybody who can answer it. A student that I work with is deaf/blind. He is really hard of hearing and he’s completely blind in the right eye, has low vision in the left eye. He sticks his finger in his eye constantly and it is something that I have not been able to stop him from doing. Is this harmful to his eye or do you have any strategies that I can use that would prevent him from doing this or redirect this behavior?

Paula Korelitz It’s a common practice with visually impaired kids with lots of pathologies and that’s because when they poke their eyes they’re getting phosphenes. If you rub your eye you get little dots that you see and that’s what they’re getting. So it’s a form of vision stimulation.

Can it be harmful – yes, if the eye actually has some vision, it can deteriorate that vision and also can make the eye sink in – something called pthisis. So, yes, you should try and discourage it, but I would try to discourage it by finding something else that that child can do with his or her hands.

Jen O’Neill I kind of wanted to chime in there because one of my favorite speakers that I’ve heard speak and he’s been on the conference call that I do with the moms’ ROP support group is actually from California Deaf-Blind Services and his name is Dan Brown and he has some great papers online just for someone, I think to expand to children with visual impairments, but also of course, their expertise is children who are hearing impaired and visually impaired.

And his take-home message is if children are exhibiting a behavior there’s usually always a reason for it. And his recommendations are very much like what Paula said – find something else to replace that and to give that child feedback because usually a child is telling you something if they’re doing something. And if you want to get rid of that behavior, it’s best to replace it with something else. But he has some amazing papers on the website for California

Deaf-Blind Services for proprioception, vestibular stuff. It’s really fascinating and it gives a lot of insight into working with kids who are visually impaired and maybe hearing impaired as well.

Caller I just want to chime in as well - being a professional that I am - I always encourage people get a medical perspective to rule out any medical problems as well. And like you said, Jen, the concept of there’s a reason why the child is doing it. Either it’s drawing attention or it’s distracting the child from a task or it’s visual stimulation or whatever it may be, it’s trying to figure out what those things are that are triggering the behavior – what’s happening before, during and after that might give you some insight into what’s happening and then developing a plan to replace that behavior with something that’s more positive and reinforcing.

It’s not so much attacking the negative behavior, but it’s teaching the child something else that’s going to get him even more attention so that he basically decides that this is no longer useful behavior.

Tina Well, actually, what I was thinking is I used to do a similar thing when I was younger, but mainly in the

©2011 The Hadley School for the Blind Page 41 of 55 2010-06-22-Raising a Child with ROP idea I didn’t have light perception in. And to me, it’s just more of a touching my eye, as opposed to poking it, I guess, and even sometimes if I’m really under stress I find myself doing it even now. But it’s just something – I don’t know – not exactly calming, but maybe something just a self-stimulation kind of thing just because it isn’t getting stimulated any other way.

One thing that I would advise is maybe finding activities that require two hands. For instance, I crochet and knit and you have to use both hands to do it. And I definitely don’t engage in the kind of behavior when I’m knitting or crocheting. However, oddly enough, if I’m talking on the phone, sometimes my finger sneaks up there just because the receiver is next to my head, but anyway, I don’t know if that’s relevant, but just to give you kind of an adult perspective on the thing.

Debbie Worman I want to interrupt just briefly. This is Debbie Worman again. And if anybody doesn’t mind, I went ahead and recorded this after discussion as a separate discussion because it might be good for us to post this after discussion on the Hadley website as well because it will give additional information. If people object that that, please let me know - it’s something I just thought might be a good idea, so let me know if

Caller I’ve tried to notice why Anthony does it. I notice he does it when he’s bored and he’ll rock at the same time. I’m able to stop the rocking more than the eye poking. He will actually push the eye really, really deep into his head and sometimes he gets really angry and really upset if I try and pull his hand away. He loves to have his arms scratched or rubbed, so I’ll do that and he prefers that, but I can’t do it all the time.

So I wasn’t sure if it was eye fatigue or what. I’m kind of grasping. I am deaf by intervenor but I’m more towards communication as opposed to some of the visual issues. It’s more towards education and giving feedback as opposed to some of the more specific issues and my background’s more into the deaf end of it and I’m trying to educate myself a little bit more. I don’t want to hurt him or take something away from him that’s not harmful, but I appreciate everything that everybody’s offering me. These are great things to think about and I will read some of those articles. Thank you so much.

Paula Korelitz

One of the things that I talk about is those kinds of mannerisms that pop up become habitual. So if we can stop them early, it’s a whole lot easier than later in life. Tina is still doing eye poking when she’s bored. She’s absolutely right about doing things with two hands. But a child who’s a little bit older – if you could create a vest with a whole bunch of tactile things on it and maybe even some things that you can pull up and maybe like a harmonica or a whistle that they can use so that they have something to do with their hands other than using their eyes as a way of stimulating themselves.

In terms of the rocking, just finding a place like a rocking horse or a rocking chair where they can get that stimulation that they need – that vestibular stimulation – which is more appropriate, may very well stop the rocking behavior that looks so inappropriate when you’re an adult and you do it.

Caller I’m an eye poker as well – a former eye poker- and I still rock back and forth today and I don’t know how to correct that or how to stop that. But to the lady that’s working with the deaf/blind student, I used to take my knuckle and put it in my eye. I never stuck my finger in my eye; I’d take my knuckle and put it in my eye. And I had glaucoma as well and ever since I got my

©2011 The Hadley School for the Blind Page 44 of 55 2010-06-22-Raising a Child with ROP eyes eviscerated – I’ve got glass eyes now, two of them – and believe me, it’s a lot less painful than it was with glaucoma. Thanks, and hi, Tina.

Jen O’Neill I just kind of wanted to reiterate what Paula was saying about movement and stuff. One of the things that I also picked up from David Brown when he had spoke – and one of the things we’ve realized with Camille, especially at a young age in school – is that in a mainstream setting, especially where there is a lot of auditory noise going on in a kindergarten classroom, you know a classroom with 25 5-year- olds, a lot of times what has really helped her is to be able to give her a break every once in a while from all that auditory input.

Because at this age, I think she’s still at the point where she’s trying to learn how to sort out what she needs to listen to and what she can filter out. And so sometimes giving children sensory breaks and letting her, after she’s been in a busy environment for a long time, just kind of kick back, jump on the trampoline, get some of it out of her system and then go back, has helped her as well. And giving her some of that vestibular input has really helped in terms of letting her jump or letting her find a swing or something like that has been very beneficial.

Jody Yeah, Jen, I think that speaks again to the importance of early intervention for a lot of these little peanuts. Often those behaviors that are ignored or we try to diminish through intervention or negative reinforcement often just stay there and that was my caution earlier to somebody that mentioned trying to redirect her hand and stuff. The problem with it is timing is always a key factor and if the child is trying to engage in something that gives them feedback and you’re pulling their hand away, then you basically develop one of those – what do you call it. You’re basically fighting with the child to diminish her behavior and I think the earlier it gets interrupted, the better.

And I think, Jen, again, unfortunately we didn’t have a chance to talk about this earlier, but the importance of planning for school and how relevant the information you’re sharing is with helping schools understand the importance of vision loss, the importance of visual fatigue, the importance of sensory breaks because these kids are taking in information from various areas where most kids who are sighted take it in first through their sight and often don’t have over- sensitized sensory input. So I think that’s another discussion that we certainly could look at in the future

Jen O’Neill Jody, I want to bring you down to Camille’s school. I think what you just said is exactly right. Giving staff members who may not be familiar with visual impairment information about why kids may do what they do and how to help them interpret their environment, especially when they’re little, is just so important. And we learned a lot in Camille’s first year about how much people don’t know and how much people aren’t used to thinking outside the box in terms of what you do if you have a visually impaired child in the classroom.

It’s totally valuable and totally worth every time and minute and second you can put into it on the front lines of educating staff because there’s just things we don’t think about and I think things that people that are enmeshed in a world where we’re used to these things, we take for granted and forget that people don’t know about and the simplest things make the biggest difference.

Tina One thing I was going to mention in terms of the whole movement thing – recliners that rock are

©2011 The Hadley School for the Blind Page 47 of 55 2010-06-22-Raising a Child with ROP terrific. If maybe there could be a corner of a classroom where one could be placed so that the student could be kind of out of the main ruckus of everything and have time to chill out and just take a break or whatever.

I don’t think they make them anymore, but one of my favorite toys when I was little was this thing called a Sit and Spin and it’s this thing that had a round base and then it had a platform on top of it and you’d hold onto the top of it and if you turn it, it would spin you around – you’d go around the little pole thing on it and I just thought it was the greatest thing since sliced bread.

Swings are great; even those exercise balls. I know of a student that I was working with one time that had one and she loved it because she could bounce up and down and get some of her need for movement out that way. There are just all sorts of things. One time I was at a convention and I saw this really cool hammock and I wish I could figure out a way to mount one somewhere because that was the coolest thing. There are a bunch of different options out there for movement activities or even, heck, just go on a walk with a student and maybe that would give them enough of a break, or something like that.

Paula Korelitz Someone did post when you were talking about that fact that Sit and Spin still exists, and we actually have one in our center. We also have something called a Wing Bow that is great for infants. It gives them not only movement, but it gets them on their tummies which a lot of our babies don’t enjoy doing anymore because they go to sleep on their backs.

But I really wanted to talk about the comments earlier about educating teachers. And one of the things I always like to bring up is the fact that when kids like Camille end up wearing glasses, adults, whether they’re teachers or just adults and other children, make the assumption that if you wear glasses, then you can see just as they do. And so children need to learn to be assertive about the fact that, yes, they’re wearing glasses, but they still may not see you across the classroom or across the playground and that’s a real issue, especially for teachers who don’t realize that these kids still may need preferential seating.

Caller In response to the things about the trampolines and wagons and stuff, that’s really great. The one thing I do do for him is I schedule breaks for sensory feedback. We have a rocking chair in another room and the therapy balls, or the exercise balls, he’ll sit

©2011 The Hadley School for the Blind Page 49 of 55 2010-06-22-Raising a Child with ROP with that at his back against the wall and he’ll rock on that or on his knees and do push-ups on it while we’re singing the ABCs – he loves that; and the Sit and Spins are fantastic. Thank you.

Jen O’Neill What Paula said is so important because Camille does wear glasses and she has a beautiful prosthetic right eye that looks very, very real. People are always thinking that she can see and they do not understand that her vision is very limited. And I think, especially at this young age too, it’s especially hard for her classmates to wrap their heads around.

So it not only requires education on the part of the teachers, but education on an age-appropriate level for the kids as well. Because otherwise they start to think that she’s just plain strange or weird because she doesn’t seek them out or doesn’t join in. But there’s ways that you can explain that to kindergarteners that make sense and they’re good with it. You tell them something – oh, they’re cool with it and they actually get it a lot better, I think, than we think they can.

And another thing too that goes along with that – and maybe Paula you did say this – is the idea of educating staff members, other parents, families,

©2011 The Hadley School for the Blind Page 50 of 55 2010-06-22-Raising a Child with ROP whoever you’re working with is that vision loss doesn’t just mean loss of acuity; it doesn’t just mean things are blurry. And that’s been a huge obstacle in working with Camille is getting the idea across that, okay, it’s not just that her vision is blurry. It’s that she has areas in her vision where there’s holes; where she doesn’t see things.

Yes, she can see large print letters, but that doesn’t mean that she can interpret pictures and visual clutter and that sort of thing. So there’s a lot of education to be done with staff members who are teaching her that, yes, she may be able to read large print, but pictures aren’t an effective way of teaching her. Or, yes, she may be able to read large print now but Braille is very important because when she’s in 8th grade, the volumes of print that she’s going to have to read may be too fatiguing. So there’s just a lot of big picture stuff that has to go into, I think, working with the staff too.

Paula Korelitz I know we’re jumping back and forth here but there’s a resource that I want to make sure that I talk about and that it gets on the list. There is a DVD called Letting Your Child’s Wild Side Out and it was created by a mom in California showing her daughter just

©2011 The Hadley School for the Blind Page 51 of 55 2010-06-22-Raising a Child with ROP really being physically active and I think it’s a very strong video, both in terms of stopping some of the mannerisms that develop because children don’t have enough experience with moving their bodies freely in space and also allowing the child to have such strong self-esteem because they can do things freely and easily and independently. And I want to make sure that that DVD gets on the list.

Tina One thing I totally forgot to mention, but I just learned about it actually just a couple of weeks ago. You know how video games are kind of what most kids are into who can see – I just learned about the VI Fit Games that are designed for the Wii controllers. It doesn’t use the Wii itself, but uses the Bluetooth connection between the Wii remote and the PC. And so far they’ve designed a tennis game and a bowling game that are purely auditory and vibration-based.

In the bowling game I guess when you bowl, your remote thing vibrates strongest when you’re in a good position to let the ball go. So I haven’t investigated that yet, but I’m going to purchase a controller and check it out cause that sounds like lots of fun. The VI Fit project was started just because of the sometimes lack of inclusion of blind and visually-impaired kids in lots of the more physical type sports and things as a

©2011 The Hadley School for the Blind Page 52 of 55 2010-06-22-Raising a Child with ROP way to get movement and burn calories and things like that. As somebody who’s been overweight most of my life, I think that’s completely important and something we shouldn’t overlook. I believe it’s www.vifit.org, I think it is.

Debbie Worman It is. This is Debbie Worman. It is nearing 8:00 and again, I want to thank Paula and Jen for staying on some extra time. It was very generous of them and I think we had a really good follow-up discussion. Paula and Jen have agreed to share their email addresses and Debbie Siegel, if you want to type those in again, as well as your address and my address, if people have follow-up questions, you’re most welcome to contact us – either Debbie at Hadley or Paula or Jen directly, that would be great.

But since it is near 8:00, I think we can call it a night and I do appreciate everybody’s participation and again, thank you so much, Paula and Jen, and thanks to the participants for their wonderful suggestions and, Paula, I see your hand up, so I know you have some final comment.

Paula Korelitz

I just wanted to say thank you to you for organizing this and thanks for the real active participation of all the participants.

Tina Actually, I think you guys should maybe do this more often than just a once in a while workshop kind of thing if people have time. Because so many parents need somewhere to turn to get information and maybe I wonder if some sort of grant or something could be set up so there could be maybe like a once a month workshop so that different people can drop in whenever they want to and exchange experiences and things like that. Because I think it’s an incredible resource and the more people that share their perspectives, the better. I just think it’s a terrific thing to do.

Debbie Worman Tina, that’s a great idea and I encourage anybody with comments like that to put it in the feedback at Hadley as a suggestion. You never know when somebody will run with it and again, if you have topic ideas for seminars, Debbie and I have discussed doing different eye conditions and so suggest those.

Also, don’t forget, if there’s convenient times, we always like to know what are good times. So I think

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