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Ask Dr. Kay Your Questions!

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Dr. Kay Ferrell

Dear Friends,

With the help of FamilyConnect and AFB Press, I am pleased to be able to spend some time with you on this blog, to talk with you about your families and your young children who are blind or visually impaired.

From Monday, July 18 until Friday, July 29 I'll be answering the comments and questions that you post here. Simply scroll down to the bottom of this thread and click on the "Comments" link to post your question or comment. You need to be a member of FamilyConnect to post a comment. If you aren't, please take a moment to register. It is free, and will also give you access to a number of helpful features on the site. Feel free to ask any questions you have about understanding your child's development, preparing for school, or any other issue that concerns you. I'll also be answering questions about my new book, Reach Out and Teach: Helping Your Child Who is Visually Impaired Learn and Grow. AFB Press has arranged a special 10% discount for families who order through the online bookstore. Use coupon code FC2011.

I look forward to our conversation!

Dr. Kay Ferrell


Ed. note: Thank you to everyone who participated! Comments are now closed on this blog post, but we hope that you will continue the conversation on our Parents of Infants and Toddlers Forum, Parents of Preschoolers Forum, and Parents of Grade Schoolers Forum.

Topic:
Ask the Experts
There are currently 52 comments

Re: Ask Dr. Kay Your Questions!



Hi thanks for the opportunity, my son is CVI cortical vision impairment so he can see partly like through shattered glass I'm told, but we don't know the extent of the brain damage caused by a stroke in utro. My question is can the CVI child actually learn in a school enviroment our schools here only cater for 2 disabilities at a time (he is visually, mentally and physically disabled) and then I still have to pay for someone to go around with him to classes if we want him in whichever school. We can't afford this so we have chosen homeschool route but I am struggling to find an effective curriculum to help my son. Another family I met with a CVI son landed up not schooling him at all and now he is in a place where he is the entertainer but can't do any of the job's in the shelted employment. Is this what I should prepare myself for and settle with the fact that my son won't be functional more than that. walking, being toilet trained eventually and a good person but not able to do much as our country (RSA) is very limited in resource or encouraging parents to get connected for all those with limited funds for all necessary equipment, therapies, schools etc. Will I find what I need to help us in your book? Could we have some access to your book through our association for the blind?


Re: Ask Dr. Kay Your Questions!



Hi, Shandre (hmmm -- how do I get the accent mark in your name to show up?),

Sorry I didn't respond yesterday -- I've been painting, and I had the blog scheduled to begin today -- but never mind! Let's get to your questions.

Regarding what your son can see, I wouldn't describe CVI as looking through shattered glass . . . it's more likely that he is missing parts of his visual field, depending on where the brain injury is located.

You didn't mention your son's age, but I don't know that the future is as bleak as it seems to you right now. My book is aimed at infants, toddlers, and preschoolers, and gives lots of ideas about how to encourage learning. The first thing I would want to know about your son is what his functional vision is like -- that is, how much does he see, where does he see best, and does he rely on tactile information for learning. Until you know that, you don't really know HOW to teach him. So, that's where I would start, and yes, my book does show you how to figure out what your child is seeing, but there are lots of internet websites that can help you with that, too. Search for "functional vision assessment" using Google.com or some other search engine. Also, check this (www.FamilyConnect.org) website for information on functional vision.

Hope this gives you a place to start --
Kay


Re: Ask Dr. Kay Your Questions!



Hello!! What a wonderful oppurtunity this is! My twins were born at 27 weeks, boy and girl, my daughter was diagnosed with ROP at 5 weeks old and underwent 8 eye surgeries including, laser, cryotherapy, vitrectomies, and lensectomies in both eyes, she does have a hole in her left retina, but we are still unsure of her vision, she is going to be 2 next month, and all of her therapist say she is doing extremely well, she is walking on her own, although not willing to use her cane, she is behind in eating on her own or holding her own cup and is behind in speech. We were discharged from her retinal specialist about 2 months ago, my question is really simple but no one is able to answer me, we really want to know how much she can see if any? I know this is probably something you can't answer as you don't know her history, we really trusted her doctor and stood behind him and still do, but if she doesn't have any lenses and can see wouldn't this make it worse? I'm at a loss as to what to do next, we still see her regular eye dr. and see him again in oct., I just want the best for my daughter and want her to live life to the fullest! its very frustrating at the same time not knowing what to do to help her, she gets frustrated easily as well as she doesn't know how to communicate with us, her brother helps her out alot too, his vision is normal and he protects his sister and helps her as much as he can. thank you for your time just even if it was to just read it just helps to get it out! thank you!!


Re: Ask Dr. Kay Your Questions!



This message is in response to reandcorey:

Twins! How wonderful! Isn't it neat how they help each other out? It's a very special bond.

You are correct that removing the lens will affect her vision. The lens is responsible for focusing rays of light on the retina, which means, if the lens has been removed, that some things will be out of focus. But not everything -- objects that are at the right distance for your child's eyes (whatever that is) will be in focus, but objects at other distances will not.

Ask your doctor for a report on your child's vision that includes the results of her surgeries. Sometimes that's written in "medical jargon," but a teacher of students with visual impairments (TSVI) can help interpret that for you. A TSVI can also do a functional vision assessment for your child, a way of determining how she uses her vision, which should give you good information on how your child learns visually (or if she is more of a tactual learner).

You didn't mention whether you had a TSVI or not . . . are you receiving early intervention services?

Thanks,
Kay


Re: Ask Dr. Kay Your Questions!



Hi Dr. Kay. Thank you so much for this wonderful opportunity. I have a 5 year old who we advocate to participate in any and all activities that sighted children do. She is currently taking gymnastics (initially one on one and now in a class with others her age). She has chores that she does everyday (feed the cat and clean the table after dinner). She rides an electric 4 wheeler, bike (with training wheels), plasma car, etc. We try to inspire her independence in any and every way. My one question is to enable her independence in the kitchen and our home, how should we organize our kitchen pantry, refrigerator, bathroom closet, etc. and when is the correct time to start? Should we use braille labels or just keep everything in the same place at all times? This gets kinda tricky when she wants to help me with dinner and wants to find the can of green beans, etc. Your advice is very much appreciated. Many thanks, Lori Planson


Re: Ask Dr. Kay Your Questions!



This message is in response to lplanson, about independence for her 5-year-old:

Lori, I'm not sure you need MY advice -- you seem to know just what to do! Look at what you've done already!

I think I have two answers for you:
1. It's virtually impossible to get everyone in your family to put everything in the same place all the time. It might make sense to do that in the linen closet, or do it for the toothpaste, toothbrushes, and hand soap in the bathroom, but usually life isn't that organized.
2. If you can, it would be helpful to label things in the kitchen in some way. You could do it in braille, or you could use textures to mark certain things, but that means you have to label every can of peas and every jar in the refrigerator -- and that seems a little overwhelming to me!

The short answer is, do what seems best for your family. The long answer is, purchase one of those braille label makers and label what seems necessary. Maybe you could set up the refrigerator in categories -- condiments on this shelf in the door, beverages here in the door, leftovers on the top shelf -- making sure that the items she would use most are within easy reach. Trust your instincts -- they already seem pretty good to me!

Thanks,
Kay


Re: Ask Dr. Kay Your Questions!



Hi Dr. Kay!
My 6 year old grandson, Brian, had RP. I am so concerned about his thoughts and feelings and how he sees the rest of the world. His behavior is not bad, but he is often moody and cries alot. Is there anything that we can do to help him with these moods?

Thank you so very much!


Re: Ask Dr. Kay Your Questions!



This is in response to gardenlyn:

Six years is a tough age; emotions run rampant, and children struggle to get hold of them. I'm assuming you're referring to retinitis pigmentosa, where his night vision is more problematic than during the day. I think before I would attribute his moods to his eye condition, I would try to figure out WHEN these moods occur, and WHO WITH. What happens right before, and how do the adults around him respond? If you keep track of this for a few days, you may discover a pattern either in terms of what seems to happen before the moods develop, or what happens in response (for example, do the moods result in more attention from those around him?).

My grandson had a difficult time at age 6, too. He's 8 now, and he's much better at handling his emotions. Try to look for patterns in Brian's behavior, and remember that he may see things differently than you do, but for him, that's normal -- he's never known anything different.

Let me know what you find out,
Kay


Re: Ask Dr. Kay Your Questions!



Hi Dr Kay, Thank you for being giving me this opportunity. My question Is I have a 8 year who is totoally blind and has austim, He is diet is very limited it consist of weetbix with sugar and rice milk,2 yogurts for morningtea,spagetti for lunch and for dinner it is very mushy vegies mixed into together on top of that he will have a bottle and that has pedisure and other times he has rice milk in as well...we have been to a speech therepist and has OT look at him we have been under what we call here in New Zealand child developmental clinlic and nothing has helped we have been patted on the back and told we are doing a great Job....sigh my isusse is that he is not progressing to the next level..Your advice would be great at this time as I am about to go back to the child developmental centre and questions to ask my pedis doctor would be great.
Many thanks
Maxine Jeffery


Re: Ask Dr. Kay Your Questions!



This comment is in response to jefferyclan:

Hi, Maxine,

It certainly sounds like your son has a very limited diet, but it also sounds like you're taking steps to make sure he gets the right nourishment. It's not unusual for children at this age to have likes and dislikes about foods, and to refuse to eat certain foods.

I guess the first thing I would do is let the child development center know how frustrated you are. Let them know that you want to do more. They may think you're overwhelmed and not ready, and they may be mis-reading your cues. So tell them! I would also ask if you could work on the food issue, because that seems to be foremost in your mind. There are behavioral strategies that can be implemented, but it's hard -- you have to be very consistent in your expectations and not "give in" in order for the strategies to work. But if it's really important to you, you can do it.

I would want to know your child's functional vision (what he can see and how he uses his vision, or whether he's a tactual learner). Do you have a visual impairment specialist who works with your family? He or she can usually do a functional vision assessment. To me, that's always the first step, because unless I know HOW a child learns, I don't know how to TEACH him.

Good luck at your next visit; let me know how it goes.
Kay


Re: Ask Dr. Kay Your Questions!



Hello Dr Kay,
I have recently ordered your book and am anxious to read it.
My daughter will be 3 years old shortly. She has severe bilateral colobomas with very limited vision.

She will be starting preschool in the fall. At what age should I tell her about her visual impairment? She will surely get questions from the other kids, even at this young age. And how should I tell her without scaring/upsetting her?

Any suggestions would be appreciated.
Thank you,
Lori


Re: Ask Dr. Kay Your Questions!



This comment is in response to Lori:

Thanks for purchasing my book -- let me know what you think! A lot of the revisions for this edition were suggested by parents like you (not that I think I'm going to write a third edition!).

I don't think you need to worry so much about upsetting or worrying your daughter -- after all, her vision is what it is, and she's never known anything different. But what other people think will affect her -- if they think she can't do anything because she's visually impaired, she'll learn that she doesn't have to do anything. If people feel sorry for her, she will internalize that and feel sorry for herself.

In my experience, the best time to do this is in preschool. What I would do is go to the preschool and do a little inservice for the other kids -- you explain a bit about your child's eye condition, and what it means for everyday things, like pouring a glass of water, or identifying objects by touch, or seeing things far away. I did this as a child's teacher of students with visual impairments, but you could do it yourself. it would be good for the preschool teacher, too, to learn more about how your child sees. I'd set up little games by blindfolding the other kids, or asking them to guess what an object is when it's hidden inside a paper bag. Your preschooler may not be able to verbalize what her vision is like, but you probably know just by watching her.

It's important when talking to your daughter to be straightforward and matter-of-fact: this is the way she is. There's nothing "wrong" with her; she's just different, in the same way that some kids are really good at certain things and others are good at entirely different things. If you can be up front and factual, she will learn to be that way whenever her classmates ask her about her vision.

You may be surprised -- young children do not always react to differences the way your/our generation did. Disability is much more visible in society these days, and children seem to approach it openly and honestly.

I have a feeling that she already knows how special she is, just from what you write in your comment . . . but every child is special to every parent, and she needs to know that's perfectly normal!

Good luck!
Kay


Re: Ask Dr. Kay Your Questions!



Just a note to all bloggers:

My grandson is visiting me this week, so I'll be responding to your questions mostly at the end of the day, after he's gone to bed. Thanks for your patience!


Re: Ask Dr. Kay Your Questions!



Luis Pistelli


Re: Ask Dr. Kay Your Questions!



Dear Luis Pistelli,

I would like to talk with you, too. Tell me -- what is the history of services to children in Brazil, and how much inclusion is going on now? Have the teachers had any training at all?


Re: Ask Dr. Kay Your Questions!



Hello Dr. Kay,
I'm so excited to be asking questions to someone who has studied visual impairment. I have a 4 yr daughter with SOD. We are extremely lucky that it has only effected her vision. Hormonally and mentally she is just fine. She has been attending preschool since she was 2. The resource up here were I live is little. She get OT about 4 or 5 times a year. She has a child development worker who she sees 2 times a month. Anyways so on with my questions. Biting, she doesn't so much bite herself as others. I know it is out of frustration or if she is tired, but she can't continue to bite people. Picking at her face, she does this and it has to hurt. But she continues until she bleeds. She doesn't like alot of food, I believe some of that is her age and some of it is the texture of the food it's self. We are working on getting her to feed herself but after a few bites, then she wants me to do it. She puts everything in her mouth. Her favorite thing is rocks and sand. How do I stop this, is there a reason as to why she is doing this? Thank you for your time.

Ashley


Re: Ask Dr. Kay Your Questions!



This is in response to Ashley Dunn:

It's normal for kids to go through a biting period. It's tricky, but you want to try to interrupt her before she actually bites -- then you don't punish her (because technically she has not bit if you stop it before it occurs), but you do say something like, "we don't bite" or "it's not nice to bite." You're probably correct that she is frustrated and that's why she bites, but she's frustrated because she can't express her emotions yet.

Picking at her face is more difficult for me to answer. When kids hurt themselves like that, something else is going on. Out of curiosity, when she picks at her face, does she get a lot of attention? She may find it reinforcing if she does. But for this type of behavior, I would want to talk to a behavior specialist -- either a psychologist or someone trained in applied behavior analysis. You didn't say where you lived; if you live in the US, you could make this part of her IEP.

The fact that she's putting everything in her mouth suggests to me that she wants more oral stimulation, which might be because she's not eating a lot of textured foods. This, too, could be helped by talking with a behavior specialist or even the OT.

Write back -- tell me about your preschool and the special education services she receives!

Kay


Re: Ask Dr. Kay Your Questions!



Hi, Thank you for your input. I live in northern Canada. I will definetly be asking her OT about it. She goes to preschool for all kids, she has an aide who helps her. Making her more social. She has this room already mapped out, just like our home. They have also made it so, she is able to find where she is. The CNIB have come up to us, to help the preschool make it easier for them and her. The CNIB only comes to where I live 2 times a year, but we go see them 3 to 4 times a year. Just the other day, we met with the mobility instructor to start the use of her cane. With time she will get it. Her child development worker and I are working on her yearly OR assessment. So hopefully that goes good. If you have any tips on how to make the cane use more fun that would be helpful. The thing is I only have so long to use it outside til it snow and is freezing outside. She doesn't like the snow as it is and she finds it hard to navigate through. Again thank you for all your input.

Ashley


Re: Ask Dr. Kay Your Questions!



This message responds to Ashley:

I sort of had a feeling your lived in Canada; don't know why exactly.

You can use the cane indoors, too, you know. Perhaps the goal during the warmer months is to use it outside, but people use their canes to navigate indoors, too. I would imagine the O&M instructor would want her to use it at school, especially when she moves into a new classroom, to help familiarize herself with the layout of the room.

As for making cane use fun, try making a game out of it. See if she can tell sidewalk from grass, wood from tile or carpet. Set up a mini "obstacle course" where she has to use her cane to navigate around obstacles. She's just learning how the cane cane be a useful tool for her.

Another thought -- you didn't mention when she picks at her face. It could be that using the cane will provide more information to her hands and keep them busy. Granted, she's not going to have a cane in her hands ALL the time, but it seems to me that she's trying to communicate something to us, and perhaps her hands need to be more "involved" -- it's like she's telling us that she needs something interesting to do with her hands!

It's hard for me to say what's going on when I cannot observe your daughter. I wish I could. I do feel she's trying to tell us something, and we have to figure out what it is!

Kay


Re: Ask Dr. Kay Your Questions!



Hi and thank you for this. My daughter is 7. She has nf. She has 2opric nerve tumors. No light perception in the left and 20/400 in the right. She has been through 72 weeks of chemo. Tumors are now stable x 2 years. She is starting the 2 nd grade. She is learning Braille (5x) a week. Has an o and m instructor and very on para-pro. Her "shadow" as I like to call has been with her since kindergarten. The school is great with her. She will be getting victor reader, has short braille books, large print items. Teachers,principal and director of student services are very supportive. She well functionally but eye exams are poor as you can imagine. Just wondering if you have thoughts, suggestions for her transition to second grade. I know this open ended ut anything you have to offer is much appreciated. Her "shadow" is devoted solely to her. Playground is marked with orange tape and school is one level. Thanks.


Re: Ask Dr. Kay Your Questions!



This message is to carroll:

Thanks for writing!
Sounds like your daughter is doing really well. Those 72 weeks of chemo must have been difficult for all of you.

It's difficult to make recommendations for your daughter when I don't know her. One thing I would think about is the paraprofessional, especially if she's assigned solely to your daughter. I'd want to be sure that the para pro helps to facilitate your daughter's interaction with the other kids . . . . it's great to have someone assigned to help with her schoolwork, but sometimes this makes your child dependent on the para pro, rather than independent, and can also interfere with her interactions with the other kids. Then, again, it depends on your daughter's needs. Only you can decide -- I'm just suggesting that you observe from time to time and make sure that the para pro is the asset you want her to be. I say this mostly because second graders are becoming more independent, and more in charge of their own learning. You want your daughter to be that way, too.

I'd keep watching, too, to see how her reading preferences develop -- whether she will be a print reader or a braille reader (some kids are both). The school sounds ideal -- as you can tell from some of the other messages here, it's not always easy to find a school system that will go that extra mile for you, and it sounds like yours has.

Your teachers have probably already done this, but second grade is a good age to talk with the other kids about visual impairment. I've even gone to some second grade classrooms and talked about the anatomy and physiology of the eye, using models. In Colorado, it seems to be part of the second grade curriculum to study the sensory system. But even if it's not in your second grade curriculum, it's a good age to talk with kids about differences among people -- they're much more aware and curious at this age.

Thanks again for writing. I don't know if this will be of much help to you, but I hope it is.

--Kay


Re: Ask Dr. Kay Your Questions!



Thank you Dr Kay. I understand what you are saying about the para pro. She has been with my daughter since kindergarten. She is protective of her but also seems to know when to back away. The kids are also helpful to my daughter. Her broiler is right in th classroom and they are aware as little ones can be. In fact she was walking with her cane this last and some older girls ran up with questions annd tried to touch her cane. Before I could say asked her best buddy told them "please don't touch her cane I helps her see". The girls were stunned and ran away. She was polite when she said it. I don 't want anyone to be afraid of the cane but I was so impressed that her friend jumped in to help. Yu could also see how proud her buddy was. She is currently reading print and Braille. She is very good on an I pad..math games. Her school room this year will have one. Thanks again.


Re: Ask Dr. Kay Your Questions!



This is in response to carroll:

Sounds good -- and sounds like you're right on top of things!

Kay


Re: Ask Dr. Kay Your Questions!



Thank you for this wonderful opportunity. My question involves pre-school education. My son in 4 years old and has bilateral detached retinas. He is legally blind. He has some vision in the left eye with limited visual fields and appears to have only light perception in the right. He has no lens in either eye.

Despite his terrible vision, he is very functional and does not have any other disabilities. Generally, de appears to be keeping up with the other kids at this point but there are some delays due to his vision impairment.

He will be entering his second year of preschool in September and will attend 3 days per week for 2 hours, 20 minutes per day. He will be working with a TVI and O&M specialist each school day for 45 minutes (which is equal to 32% of the school day). He will begin pre-Braille during that time.

I am working with the school on finalizing his IEP, and wonder if he should have an extended school day to minimize the amount of time that he misses from the classroom. The school has not offered it, but I am going to request it. I am preparing for my meeting with the school and wonder if you have an opinion about whether an extended day appears necessary, and if you any suggestions that you can offer for my meeting with the school?


Re: Ask Dr. Kay Your Questions!



Dear nancyg:

Two things come to mind:
1. If your son is keeping up with the other kids, why do you think he needs an extended day?
2. Yes, an extended day could help him.

See how hard it is to never have observed your child and to try to give advice? Trust your instincts!

I wonder if you could ask the school to have the TVI and O&M come AFTER preschool . . . both of them would still need to consult with the preschool teacher, of course. I understand what you're saying about the VI time being almost one-third of your son's time in preschool, but I think you may want to consider when his "pull-out" time for VI services occurs, and whether it could happen outside of the preschool classroom. Research does indicate that services provided IN the classroom are more effective than when they're provided in isolation, but you're juggling multiple concerns here. I think that maximizing his time with the other kids, while making sure that he's not idle and/or missing what's going on in the classroom, is the direction you want to go.

Let me know how it goes --
Kay


Re: Ask Dr. Kay Your Questions!



Hello Dr. Kay, thank you for giving us this opportunity to ask questions. It is hard to find people who understand the unusual set of circumstances many of us face each day. Your time is appreciated.

My visually impaired child is not that young anymore. She will be turning 18 in a few weeks. However, I am very concerned about her development as she moves into adulthood. She has Stargardts and was diagnosed in the 3rd grade. She is a very Intelligent child. She graduated a semester early from high school and has always maintained good grades. But now, as we progress toward college I am noticing more and more anxiety and fear in her and it really concerns me. She did not have an easy time in high school. There were a few who picked on her and bullied her because of her conditions so it has left a bitter taste in her mouth. I think she has gotten over it as she realized it was just ridiculous high school drama but she seems reluctant to venture out much on her own and is very scared of the next step. She is registered in a bioptic driving class and has been working toward receiving her driving permit but mostly only because we have urged her to do so. She does not have the confidence that she will be able to drive. Her low vision specialist assures her and I that she can. I am again, reluctant to push her too much because, as she has told me many times, I can't see through her eyes.

My question is basically, is it normal for so much anxiety to be present in such a young capable person who I feel sure can conquer anything she makes up her mind to do? And how do I encourage her to keep trying and help her ease her fears?

Your thoughts are so very much appreciated.

Thank you

Vickie


Re: Ask Dr. Kay Your Questions!



Dear Vickie,

Is it normal? I don't know; maybe I'd call it "heightened awareness," as many youth are reluctant to make life changes, especially if it means moving away from home.

Has your daughter spent much time with other visually impaired persons? My daughter (who is not visually impaired) worked at a camp for children who were visually impaired many years ago, and I remember being astonished at the kids who seemed to blossom in that environment. Not only was it a camp, without academics, but it was a place where the kids seemed to be able to relax and get relief from the daily grind of being "on stage," with that sense that everyone's watching them and waiting for mistakes, or comparisons, or whatever young people do to each other.

It sounds like you already have a college picked out. You may want to see if there are any adults with visual impairment where she's going to school. You can probably find out through the college's Disability Support Services office. But make sure she's connected to the Disability Support Services now, before she starts classes, to minimize any frustrations with making her needs known to faculty members.

I feel like I'm rambling (it's late here). Keep supporting your daughter and letting her know how capable she is. My guess is that once she's found her niche in college, you will see that fear dissipate and she'll be back to her "old self."

Kay


Re: Ask Dr. Kay Your Questions!



Hello !!
My son is 7 years old, totally blind, non verbal and very sensory defensive.
My main questions are regarding the sensory issues - it has been, for a very long time now, just about impossible to cut his finger nails, cut his hair and / or brush his teeth.
He is very strong and if we really want to hold him down, it takes 2-3 people to do so. I believe we are now at a stage where his resistance is more behavioral than just sensory. I am looking for advice how to get these much needed tasks done without to many bites/ scratches/ pinches and traumatic screaming from him. He does have daily desensitazation sessions at school for nail cutting (for a year now), but unfortunately stil don't make the actual cutting any easier ...

Thanks,
Shiri


Re: Ask Dr. Kay Your Questions!



Dear Shiri,

I think I would want to revisit your son's IEP (are you living in the US?). A year of "daily desensitization" with no effect tells me that it's not working! I tell my teachers/students that if a different behavior is not observed within two weeks, it's time to change the lesson plan. I don't mean to suggest that tactile defensiveness (which I like to call tactile selectivity, because a child, to me, is expressing a preference) can be "cured" in two weeks, but I do think that if there's no improvement, something is missing.

You have a difficult situation on your hands, I know, and I wish there were an easy answer. And as "difficult" as your child may seem to you and his teachers, try to resist the temptation to blame it on him. You may be correct that at age 7 it is more behavioral than organic, but I wouldn't want to give up. Seek more intensive behavioral therapy for him -- and remember that whatever program is set up, YOU have to be as consistent as his therapists. Behavioral programs that are followed sometimes and not followed other times only reinforce the behavior you're trying to change, because the message the child receives is that sometimes he can get away with things (he just doesn't know when, so he may as well keep trying).

Thanks for writing, and please keep me posted,
Kay


Re: Ask Dr. Kay Your Questions!



What is ur opinion on the stem cells being used to treat ONH?


Re: Ask Dr. Kay Your Questions!



Dear rbikandi,

I honestly don't have an opinion about stem cell research for optic nerve hypoplasia! But I will do some research and see what I can find out!


Re: Ask Dr. Kay Your Questions!



My 11 year old daughter was diagnosed with Stargardt's disease 1.5 years ago and is now legally blind. We are having a problem with iep implementation (things are just not happening in a timely manner). Do you have any suggestions? Do you think a cure will be found for stargardts?


Re: Ask Dr. Kay Your Questions!



Good morning, Kimberlyd:

I do not know if a cure will be found for Stargardts, but then again, I don't know what science is going to do. Look at cochlear implants -- what a difference they've made for children who are deaf and hard of hearing -- but ask me 10 years ago, and I never would have imagined it could happen. So, as much as we hope for new science that will change our children's lives, we have to deal with the here and now. BTW, I know many successful adults with Stargardts, so the future already looks good for your daughter!

The IEP -- what exactly is going on? Are you not receiving the services, or is your daughter not accomplishing the goals? You can request an IEP review at any time; at a minimum, a review has to occur yearly, but both you and the school can request a review whenever circumstances warrant it. If your daughter is not accomplishing the goals, then the methods of instruction need to be changed. Let me know more about what's happening and I'll try to give you a more precise answer!

Thanks for writing,
Kay


Re: Ask Dr. Kay Your Questions!



Thank you for this forum! My 3 yr old son is a SIDS survivor with Visual Object Agnosia and Prosopagnosia, among other challenges. He's progressed beautifully with much prayer and therapy; to the point that the neighbors can't understand why he's in a special school.

I, however, can't understand why we've never met anyone who's seen pediatric AGNOSIA - not even on this website! Is there any other parent/therapist out there with a child like ours? Have you ever treated a similar child?

We are seeking advice on how to educate him [I realize that's kind of hard if you haven't met him]. He is super with colors [it's his "cheat tool" to identify the world], but terrible with shapes - after a year, he mastered circle, but is still confusing square and triangle.

Would you recommend teaching him Braille first, or beginning with a "lifted/tactile alphabet" approach - after all, he does HAVE eyes, and we want him to use them as much as possible. Someone once suggested that learning Braille would motivate him to learn the ABC?

His school made tremendous modifications to the classroom to help him learn, but he has significant difficulty entertaining himself [at home, etc] as he can't easily identify toys or what to do with them, and more or less is limited to cars, Little People [the people only], and color-match games. He gets very bored and frustrated. We got a touch-screen computer with some games he can play, but those are limited as well. Any ideas?

Thank you - looking forward to your response!


Re: Ask Dr. Kay Your Questions!



Dear anosmommy,

I've never worked with a child with Visual Object Agnosia and Prosopagnosia myself. But from what I know about this condition, your son will always have difficult seeing objects and faces; but I also know that visual function can improve over time. It's hard to say exactly what he is seeing, but I would want to do a functional vision assessment and then a learning media assessment before I made decisions about his reading medium. I would also want to know the site of any brain lesions that are causing the agnosia -- because that information can tell you a lot about what to expect in his vision.

Good for him that he uses colors to get clues about his environment! This tells me that he has great potential -- you simply don't know what will make the difference for him.

I'm a little curious about the toys that he plays with, and whether the cars are small like the Little People. Where does he hold them when he's playing? Where is his head position? I'm wondering if he's giving us a clue to optimum size for his visual functioning. . . .

I don't know that a tactile alphabet approach will be successful, although I think braille can be. If he has enough vision to see a tactile alphabet, why not just use print? A learning media assessment can tell you which sensory modality he is using for getting information and learning. Three years is not too young for this type of assessment, and I actually think it's critical in your son's case. Exactly how much vision he has/uses may remain a mystery, but careful observation can help figure out how best to teach him.

It IS hard to give advice when I haven't met your son -- thank you for recognizing that. These are just some of my ideas, and I do hope they will help you figure out some next steps. Keep up your good work!

Kay


Re: Ask Dr. Kay Your Questions!



Hallo!
My name is Anastasija. I am a mother of a 9 year old boy- his name is Ilja. My son is blind from his birth with the diagnosis-Nirrie desease. I, like every other mother, do all my best to give my child everything he will need, to understand his world and to bring our two worlds-invisible and seeing world together. For me it has become my life, my hobby, and my professional job- now i am working as a teacher for visually impaired in a state kindergarten with blind children and their parents. I am very interested in everything, which is connected with life of blind people, blind childrens development and everything, what helps me to understand and to help blind children and their parents. I have bought your book "Reach out and Teach" at AFB and read it now, i have already heard about your book, which was published in 1985 and which seems very interesting and usefull for me too. Unfortunately, there are very few books in Russian, which deals with blind childs development and share practicall knowledge and advise. From my first education i am an interpreter and can read books in English- but there are so many parents in Russia, who would like to read your books too, but who dont know English! That was why i would like to ask you- is there an opportunity to translate your books in Russian? I can do it myself, but i need your permission. I dont know how to do it with publishers here in Russia, but the main thing for me is to get your permission as an autor- if i get your permission i will search for a russian Publishinghouse to publish your book.
I will wait for you answer,
with best regards
Anastasija D.


Re: Ask Dr. Kay Your Questions!



This is awesome - thank you for opening this up to questions!

Our daughter is VI - born in Guatemala with congenital cataracts which were removed and false lenses implanted. After visits to Bascom Palmer (Miami, FL), a low vision doc, and other docs, she also has nystagmus, strabismus/esotropia, amblyopia, photophobia, no 3-d vision/abnormal depth perception, high bilateral myopia (may be progressive), loss of peripherals in all 4 quadrants bilaterally, a staphyloma and her optic nerves are slightly rotated. Her optic pressures have been high over the last 3 years in exams under anesthesia that she has had, but glaucoma is not being "seen" in the photos or by the docs.

I have 2 questions -- we have noticed her nystagmus has gotten worse (we have told the ophthalmologist this also). Will the nystagmus slow down any time soon? Or will it be after she is an adult? Doesn't this affect her reading? (She is just entering 1st grade and I have noticed problems with reading for a long time.) Braille is not even on the table - and that is a very long story.

The second question -- her vision was running "steady" at 20/70 until Oct 2009. It started to decrease then to about 20/200 and in July 2010, it was 20/800. (School still insisted she was "Functional!" and proceeded on that basis). Her vision has been settling back at the 20/200 acuity since September 2010 to her last doc appt in Feb 2011. Will her vision go back toward the 20/70 acuity or will it run 20/200 or worse? I am unsure if you can answer this but thought I would ask. The ophthalmologist has always indicated that her condition is "unknown" - not stable or regressive, but unknown.

Another question in general -- why does the school district think that their "professionals" seem to know better than us parents and continue to put stock ONLY in their evals? It has been a long fight since 2007 and we still have 12 years to go thru high school!

Thank you!


Re: Ask Dr. Kay Your Questions!



Dear Dr. Kay, I'm a TVI on Long Island, I attended Hunter college in NYC a million years ago! I am thankful for this opportunity to thank you personally for all your literature that you have produced over the years that has included a great deal of guidance for all TVI's as well as parents in this field. I do hope you enjoyed your visit with your grandson, life is too short . Thanks again for sharing your expertise with the world! Perhaps after I get over the idea that I was actually able to correspond with you I might actually remember one of those questions I often have during my life as a TVI!


Re: Ask Dr. Kay Your Questions!



Hi Dr. Kay - Thank you for your detailed response. It's a good question - toy size. He seems to be comfortable with hand-held sized - he likes matchbox cars and kelly-size dolls, Little People (each with his personal "color" identity!), but he does enjoy Tonka trucks as well (because he can stuff 5-6 Little People inside!). That's about the extent of his playing skills. He's not great with very large toys that can't be summed up in one "tunnel vision."
The memory game he likes is also about Ritz-cracker sized.

We are scheduled for a Functional Visual Assessment pretty soon (Dr. C Roman), but what is and who does a Learning Media Assessment? Is this something we can also perform in a limited manner for teaching and practical advice?

Are your books available at the local Public Library for rent, or only for sale?

I gather from your first remarks that you would be more inclined to teach him Braille than ABC (since shapes are so difficult to discern) - is that a correct perception? (Don't worry, I won't hold you to it!). At what age do you suggest starting with Braille, and how do we go about it?

Thank you again for your generous and thoughtful advice.


Re: Ask Dr. Kay Your Questions!



This is in response to Anastasija:

уважаемый коллега, пожалуйста,

Cпасибо for your kind message. and I'm so glad that you found Reach Out and Teach helpful. I know that AFB Press, the publisher, is interested in supporting parents and teachers worldwide. If you are interested in translating the book, you would need to speak with them. They can be reached via Natalie Hilzen, Director, at nhilzen@afb.net.

Я былa студентка русского языка many years ago, but have lost much of my facility with the language. I have not lost my love of your country and culture, and I hope that I may return one day to visit with you and other parents of young children with visual impairments. Your message means a great deal to me, and I am hopeful that we can continue our correspondence!

Best wishes,
Kay



Re: Ask Dr. Kay Your Questions!



This message is for Doreen Franklin:

You know, Doreen, I've often wondered the same thing myself! That's one of the reasons I wrote Reach Out and Teach -- to give parents the tools they needed to give them confidence in their dealings with schools. Professionals have training and skills, but parents spend more time with their children than anyone else, and we professionals should not only listen to you, but VALUE what you say.

In response to your questions, please understand that I am not a medical doctor -- I can only respond based on my experience and training, and it most likely will differ from a medical doctor's perspective. I've always thought that nystagmus was a result of the brain looking for the best point of focus -- which isn't easy to find, so the eye keeps moving. It causes fatigue, just as any repetitive muscle movement would. As she approaches first grade, there are more visual demands on her due to the increase in academic tasks, which are primarily visual, after all. So it seems natural to me that the nystagmus would increase.

You have seen very good doctors, so I would not dismiss their recommendations. The list of diagnoses may seem overwhelming, but most of them are a result of the cataracts and lens implants and do not seem unusual to me. The nystagmus may make it more difficult to learn to read, but I would want to see both a functional vision assessment and a learning media assessment before I made any judgments about how she learns best (visually or tactually). You sort of imply that she has already had these assessments, but if she hasn't had them, ask your school and/or teacher of students with visual impairments to perform them.

You are correct that I cannot answer your second question. The funny thing about kids is that they give us the best answers themselves -- they have a way of telling us silently. We just have to observe and be patient and let them tell us in their own time. Stick with it! You never know what will make the difference for your child!

Kay


Re: Ask Dr. Kay Your Questions!



This message is in response to lydon:

You made my day!

It's late at night, my grandson is no longer staying with us, I wanted to catch up with this blog, and then your message is there to brighten my evening! You give purpose to my work, and I am grateful that you took the time to share your thoughts. Thank you so much!

Kay


Re: Ask Dr. Kay Your Questions!



Dear anosmommy (I love your name!),

If Christine Roman is doing your functional vision assessment, you've got the best! Please give her my regards when you meet with her.

A learning media assessment is conducted by a teacher of students with visual impairments. I used to teach my students to do something similar, but Cay Holbrook and Alan Koenig formalized it into what today is known as a learning media assessment. Cay and Alan's book (by the same name) is published by the Texas School for the Blind and Visually Impaired in Austin, TX (http://www.tsbvi.edu/curriculum-a-publications/3/1037-learning-meadia-assessment-a-resource-guide-for-teachers-2nd-ed). Basically, a learning media assessment results in information that tells you how your child learns -- visually, tactually, auditorially, or some combination thereof.

It would be nice if my book was available at the local library, but I honestly don't know if it is in your home town.

I was only trying to question why you would teach a tactile alphabet if your son could see the letters. And if he couldn't see the letters, why it wouldn't be better to teach braille rather than raised letters. I didn't mean to give the impression that I had a preference. I'm curious to learn why Dr. Roman recommends, because she will be able to make the observations that I cannot over the Internet. There aren't very many educational materials available in raised letters, and there's certainly more available in braille and print. With technology, there's no end to your child's ability to access information. As I said to one of the other bloggers earlier, your son will tell YOU what is best for him.

Let me know how things go, and thanks again for writing. Be sure to tell Dr. Roman about your observations about size . . .

Kay


Re: Ask Dr. Kay Your Questions!



Oops, correction for anosmommy:

I'm curious to learn WHAT Dr. Roman recommends . . .

Sorry for the typo--it's late!


Re: Ask Dr. Kay Your Questions!



Dr. Kay,
I asked a couple questions earlier in the week, about biting. I forgot one important question. My daughter is 4 with SOD. She is not potty trained. Do you have any suggestions? She will once in a while tell me she has to go, but all in all she could care less. I think she might like how it feels on her skin. Is this a normal problem with children with visual impairments? Or is she just not ready? I have been trying for along time. Well it seems. Also she will go when taken, she just won't say she has to go.. HELP PLEASE!. Again I want to thank you for taking the time out of your life to help us parents, that have questions but not alot of people really have the answers.

Ashley


Re: Ask Dr. Kay Your Questions!



Thank you Dr. Kay for all your time and your lengthy answers I appreciate that you took the time to really answer all my points! I certainly will mention your name to Dr. Roman, and thanks for the tips.

Good luck selling your book - I asked the OT supervisor in my son's school today to PLEASE purchase it for the teachers [and me] to use.

Have a nice weekend.


Re: Ask Dr. Kay Your Questions!



Dear Ashley,

I think she's acting pretty normal for ALL kids, not just kids with visual impairments! She may be a little older than most, but she's on the right path!

A couple of things I would do: (1) Keep track for a few days of when she's wet and when she has a bowel movement (there's a form you can use in my book; I don't remember if you have it). You want to check every half hour -- I know it's a lot to ask, but what you're looking for is (a) is she dry for two hours or more at a time, and (b) is there a pattern to when she pees and when she has a bowel movement. If she IS dry for two hours or more at a time and if you can discern a pattern to her toilet habits, THEN you can (2) start taking her to the potty at those times when she's most likely to go, trying to catch her before things actually happen.

Do you use a potty chair or the toilet? If you use the toilet, make sure her feet are supported with a box or a step stool underneath. It can be very scary for your feet to be dangling off the toilet.

Also, switch to underwear instead of diapers (if you're still using diapers). Wet underwear is not nearly as comfortable as wet diapers! And yes, it's a lot of cleanup for you, especially in the beginning, but I've found it successful over time.

Look for signs that she knows when she's wet or soiled. I don't know her language level, but if she's not using words, maybe she'll use signs. Decide on a sign (or word) that you will use every time, and before checking her, say "did you go potty?" and make the sign, then confirm with "no, no potty" or "yes, you did go potty" and make the sign again.

These are just a few ideas I had. I hope they're helpful!


Re: Ask Dr. Kay Your Questions!



Dear anosmommy:

Thanks for the endorsement! I appreciate your kind words and for inviting me into your internet home --

Kay


Re: Ask Dr. Kay Your Questions!



At what age should someone be able to tell us how much or how little if any a child with ONH/SOD have? It is frustrating to wait when we want information on how to help her learn and develope


Re: Ask Dr. Kay Your Questions!



I meant to ask how much sight a child with ONH/SOD may have and when we should expect to know. What are the testing procedures and do we have to wait until she can communicate in order to have the tests performed?


Re: Ask Dr. Kay Your Questions!



This response is to ddphillips:

Well, there are probably a couple of answers to your question. You don't tell me how old your daughter is . . . it's more difficult to tell how much vision a baby is, because their behaviors are more limited, simply because of their age. Often we don't know until a child begins to move, or to play with toys, because it is by observation (rather than testing or medical diagnoses) that the child begins to tell US how much she sees and how she uses her vision. The best way I know to figure out what a child sees is to conduct a functional vision assessment. A teacher of students with visual impairments or an orientation and mobility specialist can usually do this with you, although you will want to be sure that he or she has experience with young children (which I'm assuming your child is).

The neat thing about a functional vision assessment is that it not only tells you how her child is using her vision, it also tells you the best way to teach her. For exaqmple,iIf she does not respond to toys in her left field of vision, you would want to be sure that you present toys in her right field, then teach her how to scan for her left field.

I hope that you have educational services that can help you answer this question, because I fear that my answer, without seeing your daughter, is inadequate. Good luck, and give your daughter a little hug from me --

Kay


Re: Ask Dr. Kay Your Questions!



My daughter was born with congenital cataracts and micropthalmia. What suggestions do you have on soothing her? She screams and cries if she is not held or constantly played with. Also, she will be having surgery soon to remove her cataracts. Do you recommend lens implants?


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