Monday, July 23, 2012

NOAH Conference- Low Vision Care - The Ipad and The Student

When we attended the NOAH Conference, as I previously mentioned, we did have several times when two or more sessions that we wanted to attend fell at the same time and we were forced to split up to divide and conquer them all. At one point there were three that we wanted to attend so we each (Brian, I and my mom-in-law Glenda) split up and attended one apiece. Then when Liam was feeling tired and cranky and just wanted his momma, my mom-in-law stepped in and attended another session for me and took some great notes for us that I wanted to share. Here are her notes from the two sessions, one on low vision care and the other on the use of an Ipad in schools:



LOW VISION: What to do when you've been told that there is nothing that can be done.

(presentation 7-13-12 at Noah Conference by Thomas Porter OD)

14-20 million Americans have low vision. Age related problems will cause this figure to almost double in the next 30 years.

1.75 to 2.2 million people have some form of albinism and experience low vision. One of the first and most important steps is to get glasses obviously. However, the next step can be harder. It is wise to seek an appointment to a Low Vision Clinic to get direct help for particular problems. These may be more difficult to find, but typically, you can ask an optometrist or ophthalmologist in your area where may be one located. Most university medical centers that have an eye department are required to have a low vision clinic associated with them so contacting the main information number for the medical center may help locate the services. (Be aware that most eye doctors don't have much expertise in low vision at all. It is a very specialized part of vision care. If there is no Low Vision Clinic around, ask about occupational therapy services in your area as some therapists specialize in low vision rehabilitation).

General points made during the presentation:
• Research shows that any vision changes below 20/20 affect the person's safety and independence and their overall functions tend to decline.
• Visual acuity of 20/50(corrected vision) generally is accepted as the level when reading and life management become more difficult.
• Typically, there is a 7 years time lapse between the diagnosis of the visual condition and a referral to a Low Vision Clinic. A lot of life occurs during that time, so the sooner a low vision referral occurs, the sooner management skills can be developed.
• Typically, it is accepted that a person needs to be able to see 7 characters at the same time in order to have a decent reading speed. If the letters need to be enlarged more than that, the reading times will be slow.
• Low vision aids purchased through the internet will vary greatly as to quality.
• If in doubt about things the person is trying to read - always remember:

BIGGER + BLACKER + BOLDER = BETTER

There are 3 things to manipulate to assist vision:
1. Contrast enhancement: contrasting colors such as a beige plate on a brown placement, etc. Driving while looking into bright sunlight is an example of contrast loss. This may manifest itself by the person seeing some things clearly and other items not.

This can be improved by:
• having the proper types of lighting (see below).
• improving the figure ground relationship (dark background with light letters) (avoiding visually busy backgrounds when trying to visualize objects - the clearer the front figure is in comparison to what is behind it helps improve the contrast).
• specially tinted lenses can enhance contrast.

Gray and green glasses lenses decrease glare and enhance comfort but also decrease contrast.
Amber and brown lenses increase contrast but don't decrease glare as well as gray and green so may not feel as comfortable.
(Overall, the presenter stated clearly that amber and brown glasses lenses and contacts are preferable for improving vision.

2. Proper level of magnification. Reading in large print or with a magnifier.
• There are 4 ways to increase magnification:
a. large print
b. change the relative distance (get closer)
c. angular/optical (glasses or magnifier)
d. electronic magnifier.

• Large print may not always be available (restaurant menu's for example) so having a pocket magnifier is a good idea.
• Placing books on a slant board brings them closer to the face.
• Ruby video magnifier is a pocket video magnifier with a folding handle and a stand. Good company/solid reputation.

3. Learning to use remaining vision more effectively. (related to all the above).

Beyond any other factors, the presenter stated that highly motivated individuals tend to do well in their lives. The people who tend to dwell on how bad things are tend to not do as well in life.

Lighting / Bulbs:

Halogen bulbs are generally considered to be the worst for causing glare. CFL and traditional incandescent bulbs cause harsh glare also with a yellowish cast. Typically you need a good balance of brightness and contrast.

Natural daylight bulbs are what are currently recommended as a balance between brightness and glare. Examples of these are Ott Lamps and Daylight Lamps. Similar bulbs are available through traditional lighting sources also.

***********************************************************************

While not discussed in-depth, mention was made of SynergEyes contacts (hybrid hard and soft lense contacts combined) and a company called Enhanced Vision Systems who has a product called Jordy which is a video magnification systems mounted on glasses.

Session #2

THE IPAD AND THE K-12 STUDENT

( from the presentation listed above at the NOAH conference 7-14-12 by Joanna Graham)

The use of an Ipad in school is very helpful to the student. While the school will likely acknowledge their responsibility to offer large print textbooks to the student, these textbooks are very large and bulky and can be difficult to transport between classes even in a backpack, etc. The chances of injury is higher to a student carrying such a heavy load around. Also, some students have reported difficulty in getting all their texts and belongs in their school lockers.

Most students with visual impairments also use a CCTV unit to magnify and enhance their work. It sits on top of their desk and takes up a lot of room. However, ipad technology makes the use of a CCTV unnecessary as most everything can be done on an ipad that needs to occur in school.

One of the disadvantages of a CCTV is that it is bulky and when the student begins changing classes, it is difficult to change from classroom to classroom as it typically must be transported on a cart. If the child has to do the transporting of the TV, then it prevents them from being able to socialize with the other students at class change times. It also requires several minutes to get set up in the new classroom. So if an ipad can help prevent some of these issues as it is very portable, then the child will benefit. An IPAD is also much cheaper than a CCTV set which costs $2500 to $35OO so many school systems may be willing to purchase an ipad instead for the student to use. If the school purchases the ipad, the student may have to leave it at school at night and through the summers so many families are buying their own ipads so the student has full access to the technology. (It was also noted during the session that many local Lion's clubs may be willing to buy an ipad for a student or may be willing to donate several to the school district for use by persons with visual difficulties).

A protective case is VERY important when giving an ipad to a child to help protect it from being dropped, knocked off the desk, etc. Slant boards are available to purchase to help put the pad at an angle that makes it most readable while avoiding glare from overhead lights. A stylus or a writing glove is available for writing tasks. The stylus is not expensive ($12 or so) and having extras may be a good idea. Wireless keyboards, enlarged keyboards and reverse color keyboard covers (off-white with black text) are available from Apple.

Protection from theft at school may be an issue also. Free etching is available from Apple to help identify the pads owner. There are also apps such as Find My Phone or Find My Ipad that helps pinpoint the ipads location if it has been lost or stolen. Classrooms are typically left unlocked when the students leave their rooms for library or recess, so the Ipad should be locked up somewhere. Small safes are available for around $25 from Wal-Mart that can be left at the teacher's desk or in a closet so the student can lock it up when they leave the room.

If the parent is the one with the Itunes account, then any apps purchased for the Ipad can be shared on devices associated with the account.

Ask the school for any wireless internet information. If there is a group activity to look up information/research on a computer, then sometimes the teacher is happy to have another device to be used for research projects. The student's group can share on the ipad rather than waiting for a computer. You may have to make the point to the school that if the other kids are looking up items on the internet for their class, then the visually impaired student has the right to be able to do so also so the wireless info will be necessary. Ipads can use wireless or 3G/4G but the wireless option is typically best for school.

The news and current events features are helpful for school reports, etc. If the teacher has regular magazines that will be used for research, these can be downloaded onto the Newstand feature for the student's use. If the school has a subscription to the print version, they may have access to a downloadable one also that can be used free or the school may need to opt to pay for this for the ipad.

(The policy on playing games, etc. at school should be verified to avoid any misunderstanding between the student and teacher.)

ZOOM is probably the most useful function that an ipad has for someone who is visually impaired. Any text can be zoomed (magnified) up to whatever size is needed. There are several ways to use the zoom although many just use the pinch feature like an iphone works. ($19.99 for this App)

In the Settings: General: Accessibility features, the font size can be set to a permanently enlarged size. The background color can also be changed to a black background.

There is also a Voice Over feature in the accessibility settings. However, currently Zoom and Voice Over can't be used together although this is supposed to change in the near future.

Speak Selection is a feature that lets you highlight text and then the device will read the highlighted area to you.

Ipad 3's have a mic and can take some verbal commands, much like an Iphone Siri function.

The Ipad has a place for headphones for listing to music, podcasts, videos, etc.

Calendars, Reminders, Notes features can be used for the student to record classroom assignments.

Any internet features that are needed regularly can be added to the homepage of the device by going to internet options and doing Add to home screen and it will appear as an app.

Printing from an Ipad is difficult unless you have a MAC printer. However, there are some apps in development to help with this (one is listed below). For now, it usually is easiest to email the document to someone who can then print it off.

With all of the above noted, it may be necessary for the student to have a laptop available to them. The Ipad doesn't read all textbooks well and some people find that a small laptop at school may still be necessary depending on the textbooks being utilized. If the school has purchased textbooks for the normally sighted kids, the school should approach the textbook company representative and request an electronic large print version of the textbook also. Not all but some companies give these free to the school as a service after they have purchased a certain number of hardcopy textbooks. The school may be able to push the representative some to get free large print/electronic versions in order to be able to keep the school's business.

Several people indicated that the battery will hold up for a school day without problem.

APPS:
• Join Me allows the ipad to show presentations/etc from the teachers computer. Not interactive = just reads what is showing on the screen. Both need to have downloaded the app.
• Splash Top performs the same as Join Me but allows for interaction between the 2 devices.
• Notability allows writing with a finger or stylus to take notes.
• Noteshelf allows taking notes on a page that looks like a notebook.
• Italk allows recording the teacher's lecture and play back at a later time.
• Imovie lets the student make videos for projects.
• Pages functions like Microsoft word for documents.
• Keynote functions like a PowerPoint presentation function.
• ECAMM Printopia makes any printer believe it's a MAC printer. (still has some bugs apparently at this point).
• Dropbox is an app that lets the teacher share their documents/videos/photos easily with the student.
• Coursesmart is a reader that allows rental of textbooks with large print and can be used for quite a few textbooks.
• Pearson Success Net is a web based textbook service that can be very useful but doesn't always work well (textbook formatting doesn't always hold up the way it should).
• Kindle is free and is great for novel reading. The font can be made larger easily and it was indicated that the background color can be changed also.
• Nook and Nook Kids apps work much the same way as Kindle.
• Glio, E pub, Goggle books are all other book readers. (Most book readers will only show text - not illustrations. For small children - having a hardback book to look at the illustrations simultaneously may be a good idea).
• Bookshare.org is an accessible online library for people who are print disabled. Gives you access to thousands of books and textbooks. If an MD will provide a letter indicating the person is "print disabled" then this service is free.
• Storia/Sholastic are books that many schools utilized - the company will provide E versions of their books if the school requests them.
• Public Library - many libraries have apps available for free lending.
• Dictionary app - several types exist at differing levels of cost. An app that will verbally read the word is a good idea.
• Alphabet apps will be good for younger students who are learning to read. One that will verbally say the alphabet and words are important.
• 1000 sight words is also a good idea for younger kids.
• Telling Time or Interactive Telling Time is helpful when learning this skill.
• US Map is a good app for learning geography and state capitols.
• Periodic Table will help older students in chemistry.
• Math Practice apps may assist with math learning.
• Handbooks for group activities such as Boy Scouts and Girl Scouts are available for downloading onto an ipad.
• Instructions for many toys/puzzles/games (Lego's for example) are available for download to an ipad.
• Music Zoom - this is an app that is not out yet but is under development. Someone that attended this session announced that he is developing this app for learning to play musical instruments with a visual impairment.


Friday, July 20, 2012

Library Services

(A small break from the notes from the NOAH Conference, I'll get back to those later this week though...)

There are some amazing services for the blind and visually impaired to gain access to Braille and large print books for free. The Library of Congress National Library Service for the Blind and Physically Handicapped (NLS) has a state by state service which can be accessed through your states library website. The books and aid devices are issued on free loan just like you would at a city library but these books arrive in the mail to the individual and are then returned via the mail with free postage. The books can be “checked out” or loaned for up to 6 weeks! To participate you have to fill out an application and have it signed by a medical professional stating that the patron is indeed blind or visually impaired. Once submitted you will be contacted with information about how to begin borrowing books and equipment for reading. (FYI they also have books on tape to listen to.) We just began this process for Liam and are so excited that services like this are available. Now lets just hope they have some good children’s books!


Helpful Links:

National Library Service for the Blind and Physically Handicapped- http://www.loc.gov/nls/

Resource Center- http://www.qualityansweringservice.com/resources/blindness-resource-center

Arkansas Library - http://www.library.arkansas.gov/Pages/default.aspx


NOAH Conference Sessions: Team Parenting, The Great Adventure

Another two good sessions at the conference this year were “Team Parenting” and “The Great Adventure: Discovering the joys and challenges as the parents of children with Albinism”. Each was geared specifically towards parents, talking about marriage and struggles that come along with raising disabled children. “Team Parenting” focused on keeping up with a healthy marriage and making sure the “balance of duties” did not fall to one parent but that the work load was shared between both equally. “The Great Adventures” was more about the struggles the parents of a child with Albinism face each year as the child grows. They were both equally helpful to us but I have far more notes from “The Great Adventure” session since “Team Parenting” was almost a repeat for us from our pre-marital counseling sessions years ago—always a good reminder though—plus I was in and out with a sleepy, cranky Liam! Here are my notes from each:


Team Parenting

- Make sure you have regular “meetings” outside of you date nights to discuss schedules and agendas for the kid(s). Go over appointments, school events, problems with schools or the student, concerns or current fears, and anything on the family calendar. Make sure to keep you date nights separate and NOT about these issues!

- Look for ways to stay in touch with each other. Weekly date nights, text messages, leaving notes for each other, coffee dates, mid week lunch dates, evening walk around the block, etc. Make them rituals so that you will get into a routine of this so that neither partner feels neglected in attention in any way.

- Take turns. Don’t make it a habit for only one parent to take the child to doctor appointments and the other to do sports, take turns doing each of these so that the balance is the same for both parents. Important that each know what is going on at the doctor/sports/school/etc.

- Remember to say “Thank you”.

- Make sure to take time not only with your partner but with yourself. Have “alone time” often to “reboot” and relax and make sure your partner is doing the same.

- Show appreciation. Make sure, on top of saying “thank you” that you let your partner know how much you appreciate the things they do. It helps to be specific in this area when showing appreciation, ex: for doing the dishes, for cleaning up the yard, for taking them to soccer, etc.

- One on one time with each child. Make sure each child gets one on one time to do an activity they each like so that no child in the house is feeling neglected due to another child’s disability. (This can even sometimes be just taking ONE child with you on errands and alternating each time.) Make sure each parent is doing this with each child not just one parenting getting one on one time with the kids.

- Make sure the load is shared. Often times in any family the “work load” is unbalanced but in a family with a disabled child where there is even more work (doctor visits, therapy, etc) the load is doubled often on one parent. Make sure you and your spouse share responsibilities and that neither of you feel like you carry more of the load. It is easy to “burn out” if the load is not even. Share doctor appointments, therapy visits, school meetings, fixing lunches and cooking dinners, the household chores, etc.

The Great Adventures: Discovering the Joys & Challenges as the Parents of Children with Albinism

-Make sure your child with Albinism has older friends with Albinism, they will act as mentors to them often times. Make sure you have other families affected by Albinism to support you and to talk with through different issues you will face.
- Educate- Yourself on the child’s condition, your family and friends, and the child’s teachers and peers.
-Share the information with the child who has Albinism. Often times you need to explain to them why they look different, why it is important to protect them from the sun, and why their eyes work differently than others. Don’t assume the child knows this or does not need to know.
- Seek out and learn about all the low vision solutions and test them out to see what the child likes or dislikes.
-Be an active member in your child’s IEP meetings.
-Don’t assume everything in your child’s IEP is being done or followed. It does not hurt to follow up and double check.
-Cheer on your child and support their decisions even if you disagree. (Some children may want to try to do things with their limited vision that you think is not going to be possible but no matter if it is or is not they need to know you support them trying to find out for themselves.)
-Close your eyes and let them take chances. Example: It may scare you to watch them play baseball or ride a bike because you are afraid they will get hurt but don’t let this stop you from letting them try! They may even succeed!
-Ignore limitations. At first when they are little and first diagnosed lots of doctors will tell you “they will never do this or that” but do not let that worry you or stop you from letting them try. So many times the doctors are giving you “worse case scenario” which is not always true since the vision and abilities range differently for each person with Albinism.
-Expect the same from all your children even those with/without Albinism. You children should all be treated the same, get to do the same things, punished the same, etc so that none feel favoritism or limited on what they can do.
-Kids with Albinism often find their own way of doing things like reading or watching TV, let them find what way works for them and do it that way, don’t try to force tech devices on them to help with their vision if they do not want to use them.
-Don’t prohibit or limit sun time just make sure to use sun protection.
-Don’t let the child isolate themselves from others due to their different appearance or vision.
-Remember even having two children with Albinism they will not see the same!
-Include siblings without Albinism in everything, let them help the child with things as well and vis versa.
-Answer the child’s questions about Albinism and their sight don’t deny it, tell it like it is.
-Observe them, their behaviors, and such to see what adaptations need to be made in your home environment and at school. Do they need a stick/cane, or a guide dog, do they need more or less sun protections etc.
-Keep up to date on all laws and regulations involving your child’s condition.
-Canes can help with sensory processing to “feel out” their environment.
-You know best for them not their teachers or aids!
-Find the beauty in Albinism. It’s not all bad!!



Thursday, July 19, 2012

NOAH Conference Session "Get Off the Bench and into the Game"

Everyone knows that it is important for kids to get daily physical activity, either with sports or hobbies or just play time recreation activities, but what do you do when your child is visually impaired? They will enjoy the sports just as much as sighted children but which sports are safe for them and which ones will allow them to be a competitive sports player if they wish to do so? And how do you encourage visually impaired kids to play sports? These are all things that were addressed in NOAH’s Conference session titled “Get off the Bench and into the Game”. We attended this session because even though my husband was never really into sports growing up he is a big nature bum at heart and loves to be outdoors. We want to teach Liam how to play sports and do outdoor activities for fun if not one day competitively in school. So here are my notes:
• Staying active in sports: boosts confidence, self esteem, and strength.
• 70% of disabled individuals DO NOT work/hold a job; 50% of those who are disabled but play sports DO work/hold a job.
• For disabled individuals there are many sports in the Paralympics and also some on local levels. (The USABA.org is an organization for blind/visually impaired athletes.)
• Some visually impaired sports:

Hiking -a stick/cane is often needed
Frisbee -large, brightly colored soft frisbees are available
Track and Field – for hurtles they typically count steps, often a guide runner is needed or used to run along side the runner verbalizing instructions throughout the course
Tandem Biking/Tri-cycling- is a competitive sport but can be done for leisure (need one sighted biker)
Beepball- blind baseball only with two bases (1st and 3rd) only one will sound an alarm to let the batter know which way to run (they sound at random not in numeric order)—also the pitcher is the only sighted player the others are all blindfolded to make sure the game is fair for those who are blind and those who are partially sighted. The ball also beeps to let players know where it is in play. For more about Beepball click HERE.
Goalball- everyone again is blindfolded to level the playing field for blind vs. partially sighted players, bells are inside the ball which is the size of a basketball and there are two goals just like in soccer but players roll the balls like in bowling. There is tactile tape (often duct tape) on the court to allow the players to find their positions since they are not allowed to leave the “play zone” when on defense. For more about Goalball click HERE.
Judo- only 1 modification is made and that is that both players must remain in contact the entire time. You can also talk with the child’s coaches about using verbal instruction and/or changing the lighting in the room to help with glare.
Rock Walling- great for visually impaired kids already hooked into safety harness.

(*These are just a few but even something as simple as getting outside and rolling/tumbling around playing Nerf gun wars is an activity and it gets the child off the couch!)

There are many camps for visually impaired/blind individuals to learn sports using guide skiers, runners, swimmers, etc. Look up “Camp Abilities” which is an organization that holds camps for disabled kids such as “Learn to Surf”, and “Learn to Cycle”.

In all sports the competitive nature gets stronger as the children get older so often it gets harder for children with visual impairments to stay in sighted sports as they grow. Always reinforce that it is great to play just for fun and not competitively and that you are proud the child made the team and tried their best and that it is not always about winning. Often there are problems with regulations on wearing hats and shades during sports, know that they have the right to participate with these accommodations and if you face troubles in this area don’t hesitate to speak with the board. Sometimes it is an issue of having all the players matching or the game can be forfeited, so in cases like this all players could wear the sun gear as well.

P.E. in school- Make sure the child’s P.E. teacher knows not to use gestures, to make adaptations to the sports but not to single the child out when doing so. It is easy to do activities with each child using a guide runner or one child being blindfolded and the other verbalizing commands to them, these can be fun for all and teach good team work skills. (A great book about this is “Going Places” from APH.)

*During any outdoor sport, children with Albinism need to make sure to take protection from the sun with hats, shades, and sunblock.

Wednesday, July 18, 2012

NOAH Conference Session "Ask A Parent Panel"

One of my favorite sessions at the 2012 NOAH Conference was the “Ask a Parent Panel” with several different moms and dads ready to answer a multitude of questions on raising a child with Albinism. Their children all varied in age, sex, and race so there was a great diversity in the answers for each question and every parent had their own ideas or opinions to share. Here are my notes from the question and answer session with them all.

*Q: Do your kids freak out in crowded places and how do you handle this so that they can be a little independent?

 A: Yes even at 10/12 years old they still freak out in crowded places as is normal with a visually impaired child. We try to make sure they know what color we are wearing when we left the house so that if they get lost in a sea of people they can try to locate us by our color shirt. Another mom’s answer: I always tell him “Don’t panic, you don’t have to find us we will find you just stop where you are and yell!” She said several times they have been in a crowd and she will be no more than five feet from him but he loses track of her and starts to shout her name. At times he feels comfortable to wonder a few feet away or so as long as he knows she will find him when he shouts for her.

*Q: What are some challenges your kids face?

A: Headaches are common. The key is teaching them to recognize when one is coming on so that they can take medicines or go lay down before it becomes monstrous and they miss school because of it.
-Hard to meet new people. Often times we have to coach them to ask the child’s name and information when they meet because due to their low vision they may not recognize them the next time they meet. Also it’s hard due to self esteem to get them to meet new people. You have to push them sometimes but know when to back away and let them handle it themselves.
-Seeing things when out and about is often hard. When you point out “oh look at that helicopter” (etc.) this is hard for them to follow or see with out technology/magnification devices on hand so make sure to carry some with you at all times so that they do not miss out on things. As they get older force some independence on them and make them carry their own devices to be able to see things outdoors. Sometimes the child does not want to admit that they are different than others so they will resist and refuse to use the devices to help them see better and you cannot always force this issue. When they feel they do not want to miss out anymore they will “hopefully” come around.
-Dealing with a devastated child is very hard when they face something that their vision simply will not allow them to do. One parent told a story that their son just wanted to excel in baseball and when he was no good at it he just crashed, devastated and disappointed in himself. You have to reinforce their strengths. Tell them you’re proud that they just made the team! Etc.
-Dealing with well meaning teachers is hard. Sometimes a teacher will think they are helping the child by not allowing them to do something like go outside at recess on a sunny day but really they are hurting the child who WANTS to go outside and be normal with the rest of the kids he just needs some sunscreen and such to do so. Also when a teacher means well by not wanting the child to feel different from everyone else in the class so she gives them the same handouts but really the child is different and needs the exception made to give them large print hand outs or help them copy it down. These type well meaning teachers often do more harm than good.
-Sometimes you have teachers who just flat out refuse to enlarge things for them or often “forget” to do things to help the child. One parent mentioned to deal with this when her child’s teacher “forgot” to enlarge the print on her handouts, she went to the school with a handout 4x smaller than normal (since her child needed it 4x bigger than normal to read) and gave it to the teacher to read. The teacher could not read it at all and she reinforced that this is what she did to her daughter so how was she supposed to read the homework either? You have to make it where they actually “see” where the child is coming from and why they child’s eyes are different from the other students.

*Each parent gave their “1 piece of advice” to us next.

          - Independence. Don’t jump in and take over when a problem hits, teach the child to self help. When a teacher forgets to enlarge print on something, have the child first take it to the teachers attention before you jump in to fix the problem for them. It will mean more coming from the child than from “just another angry parent”.
          -Get an Orientation and Mobility Specialist. They will teach the child how to navigate every day areas so that they are familiar with their environment. (They teach them how to use walking sticks and how to count their steps around a room. Ex: It’s five steps to the right then two steps to the left to navigate our hallway, or the fridge is five steps away from the back door. Etc.)
          -Do not let the schools take you off of an IEP and switch you to a 504 Plan. Know your legal rights!
          -Don’t limit the child; let them try whatever they want to (as long as it’s safe) even if that means that they fail some. One of the parents mentioned that their doctor told them the child would never and should never ride a bike with his low vision, but they let him try it in a safe zone and he LOVES it! One day he may crash and he may never be able to do it out of their safe zone around their home but at least they never told him he could not do it at all.
          -Make sure to expose them to other children and adults with Albinism. They need to see successful, career professionals with Albinism to show them that they can be successful even with Albinism and low vision. They also need the friends with and some without Albinism. Get them to do the summer camps for low vision kids and for kids with Albinism to push them to do more and try more things like sports and such. It’s important that they have kids in their lives who can relate and sympathize with their issues with their vision and their Albinism.

* Q: How do you handle sunburn and schools/teachers?

 A: When the child is older if they forget the sunscreen it is definitely a learning experience. They cannot always rely on the parent to stop them and put on the sunscreen for them at some point the have to be independent and remember to do this for themselves. It’s important to start applying sunscreen each time you go out early on so that it becomes a habit for them and make sure they know and understand what happens when they forget the sunscreen. (By 6-7 years old the school will expect them to know how to apply the sunscreen themselves so make sure to teach them how before then.)
    -Also, have sunscreen and a hat in both your IEP and/or your 504 plan for the school to apply or give them to do for themselves before they go outside each day. Teacher will often forget so they need to make sure to stand up and make it known that they need it if it has been forgotten and not just go ahead outdoors and suffer with a sunburn. If the school refuses to put this in an IEP/504 Plan for you threaten a lawsuit because as bad as that sounds they will consent to avoid any legal issues. (Use this only as a last resort.)
    -One parent also mentioned that if you can afford to, use a neuro-psychologist to give a report on “how the child learns” to the school at your IEP meeting. They feel like the person who evaluates your child for the school, since they are paid by the school, are not looking out for your child’s best interest but that of the school. Using an outside source ensures that your child gets everything from the school that they need to excel.
    -On taking notes at school: Get handouts of all notes taken in class from the teacher on paper that is enlarge for the child to see. Still urge them to take some note in class and listen for things not on the handouts. Use coping and highlighting as well.
    -At the beginning of the year it makes a big impact if the child will write a paper or go to the teacher and tell them a little about themselves and their Albinism as well as how they see things. This usually has a great impact in getting the teacher to help the child throughout the year and not forget to make accommodations for their vision.
    - Sometimes it helps to get the vision spec goggles to show the class and teachers how the child sees. (I shared a link in the last post on where you can purchase these!)

*Q: How do you make sure your other kids (without Albinism) feel important as well?

A: Make sure the child/children without Albinism are allowed to help for things like the NOAH conference and other functions for families with Albinism and that they know that “Albinism is a family affair and we are ALL part of this family.” Ensure them that though you spend a lot of time with them for their eyes, you spend other time with them. (Examples would be braces/teeth, their school work, their sports, etc.)
    -Make sure you make the kids without Albinism use sunscreen before leaving the house as well, it’s always a good habit for anyone.
    -Make sure to take individual time with each child to make sure you are giving them 100% of your attention at some point.

*Q: How do you handle the lunchroom?

    -Kids with low vision typically report that they have a hard time spotting friends or an empty seat, and navigating the crowd and food lines in the lunchrooms at school. Some kids will take their lunch so that they can rush in and get seated before the crowds of kids start, others will have someone walk them through the lunch lines and to their table of friends. Some kids just have their friends shout out to them so that they can spot them more easily once they have gone through the line and are trying to find their seat. Each child though at some point has ended up sitting alone because they cannot find their friends or an empty seat near them so make sure you child is comfortable and happy to just be by themselves at times.

*Q: Dealing with bullying.

A: Even if the child cannot point them out they KNOW who the child is usually. Everyone knows who the bully at the school is and can usually tell you but sometimes the child may refuse or act like they do not know who is doing the bullying because the do not want you to get involved. There has to be a line drawn for when you get involved. If it is happening once a week this is too much and you need to take it directly to the school principal. If it is just an occasional bullying the child needs to be taught how to handle these situations because they are going to happen to them at some point. They need to remember to keep calm and always ask for help when need. (The person bullying them always wants the reaction!) If your kids are getting bullied make sure to get them some older friends because older friends can always intimidate the person bullying them and they will usually stick up for the child being bullied. If you have older/larger friends around they are less likely to get picked on. Help walk the child through several ways to handle the situations first rather than jump right in unless the child wants you to do so. If it continues make sure once you have made it known to the teacher and staff that it is happening that you make it known to the “higher up authority”—the principal, superintendent, playground official, etc.

Monday, July 16, 2012

NOAH Conference Session "How We See"

One session at the NOAH conference that we really liked was the “How We See” for families to see what a person with albinism really sees through their eyes. They used the following video to explain their sight, and we also were told that several years now at this session of the NOAH conference they used goggles to simulate what their vision is like to normal sighted individuals. We did not have these there this year but we did get information on how to get a pair (http://www.lowvisionsimulators.com/sitecontent/find-the-right-low-vision-simulator/cataract-simulators) to show friends and family back home this, the website we ordered them from clearly shows you pictures of the different visual acuities with the goggles. (Ex. 20/20 verse 20/200 verse 20/400 etc.)


**Side note: One thing that Brian and I did not expect was the number of people with albinism at the conference who were using walking sticks/canes and seeing eye dogs. When we talked to a lot of people they told us that in new places the sticks/canes are sometimes preferred and very helpful until they learn their way around but they are not needed in familiar places like their homes and such. It also greatly depends on the individual’s vision and remember, everyone with albinism sees things differently through their eyes, no two are the same as this video clearly shows. **





NOAH CONFERENCE "Ask the Doctor" Session--My Notes

First off let me start off by saying how amazing the conference was for our family and many others. We went into it thinking we would only meet new families and not learn near as much as we did because we thought through the internet and our doctors that we would probably have “heard it all” already which was INCORRECT! We returned home with near 30 pages of notes with new information that we would probably have never heard if we had not attended the NOAH conference. We greatly urge if you can afford to attend to do so in person because these “clift notes” versions and even the slide shows that NOAH is releasing on their website from a few of the sessions do not do it all justice. I would not trade the valuable experience, the knowledge we received, and the families and individuals we met that will forever be part of our second family, for a clift notes version. That being said I realize that not everyone can afford to go (a problem we are hoping we can one day solve with some upcoming charity events and new nonprofits in the works ) so I tried to visit as many of the sessions as possible so I could get some valuable notes for those who could not attend this year.


The sessions ran sometimes 4-6 at the same time so we had to divide up and still could not attend them all. (Most of the ones we attended were geared towards toddlers or general issues any parent could relate with.) After the first initial “general session”—for everyone to attend together—which was called “Latest Research in Albinism” we moved on to a smaller group, our first session called “Ask the Doctors” for parents.

The panel of doctors consisted of: C. Gail Summers M.D., Murray Brilliant Ph. D., David Adams M.D., Ph.D., Rick Thompson O.D., FAAO, Donna Appell, RN.

Everyone was given a note card to submit questions or could raise their hand for questions as well. Here are my notes from the session.

*It is possible that Nystagmus is caused by low density of cones in the fovea. Not yet confirmed.

*No difference in treatment of albinism unless patient has Hermansky-Pudlak Syndrome (HPS). HPS needs to be ruled out if ever a child presents with albinism but has had genetic testing and no gene is found for albinism because HPS is not detected in most normal genetic tests and can be harmful to health if not followed closely. (I actually asked this question for a friend and had asked “if no gene for albinism is found but the child is diagnosed with albinism what does this mean and what can they do next?”) They also stated that as long as HPS is then tested for and ruled out then the patient does not need to do anything further because the gene just may have not been found yet or have been difficult to find in small tests that were performed. (aka to test it all would cost the facility to much money so they test on a smaller scale—so their “scope” was possibly not wide enough.) 75-80% of changes are seen in the normal genetic testing but the rest is not.

*Two partners with different types of albinism (ex: OCA1 and OCA2) then cannot have a child with albinism. Their children would be carriers but never have albinism. (I had never heard this before! Was very shocked!)

*For a child to present signs of albinism (as far as they know) BOTH parents have to carry a gene. Even if it is only found in one parent it is probable that it is in a different gene that was not identified or found in the genetics testing.

*Do colored contacts help? The tinted ones can reduce glare if entire lens is tinted. 15-20% of vision loss is due to glare. 15-20% is due to Nystagmus and the rest is due to the cone loss which this will not help.

*Treatment for Nystagmus? There are three types of surgery. One operates on the vertical muscles, one on the horizontal, and one on all the muscles around the eye. The vertical muscle surgery is for when the head turn is up or down to fix the null point. The horizontal surgery is for when the head tilt is turned to one side usually the right side. They do not know if doing the surgery is best when older or younger, they did say child must have a true null point found before the surgery is done because it would be harder to correct later if the null point was incorrect at the time of the first surgery. (Sometimes people will think the child’s null point is up or down but really they are trying to look over or under their glasses) There are some high risk complications with doing two surgeries so it is best to wait until a true null point is found which they said does not usually appear until the child is actively studying books or small print materials.

*Kids cannot see their own eyes move with Nystagmus in a mirror or such, only way they will see their own eyes move is with a recorded video played back to them.

*Studies show that even though individuals typically prefer one eye over the other when using their magnification tools, neither eye is actually clinically better than the other at sight. Think of it as this: both of your arms and hands are equally strong but you prefer one to write with etc.

*People with Albinism often need two different prescriptions in glasses/contacts if used—one for close up reading and the other for day to day tasks.

*Ariel print is better than Times New Roman because there are no seraphs in the font.(To see the difference compare the H in each type font on your computer.)

*Changing polarity can help when reading—instead of black font on white background do white font on black background.

*Autism and OCA—as of yet there have been no formal studies to see if there is actually an increased rate of Autism in OCA. Remember that individuals with low vision always test on the autism spectrum incorrectly most times due to their other senses being heightened. Studies have however showed that ADHD is at an increased rate in kids with albinism. Fatigue may explain this more than some medical things. It is possible though that a child testing on the autism spectrum with albinism IS actually autistic but more likely that they test needs to be redone by someone who is a specialist in Albinism and Low vision to see if their findings are more along the lines of typical behavior with vision loss and albinism rather than autism. A lot of the areas where the child falls on the autism spectrum can usually be explained by their low vision. USE A SPECIALIST in low vision. No medical link though as of yet.

*Sensory Integration –will always be higher due to low vision.

*Research in tyrosinase therapy shows it is good for OCA1 only. Re-growing small amounts of pigment, and early intervention before age 2 years is key. (Hopefully I got the spelling of that right!)

*Does adding Levadopa to patching of the good eye help with lazy eye improvement?

Studies are not 100% yet—possibly in next few years will know. Patching has worked in general to help the lazy eye by covering the good eye with a patch. Visual acuity raised with Levadopa during patching did stay up after the Rx was dropped/use was stopped. In test individuals some side effects of tantrums and motor issues were reported that could possibly be related but not yet proven.

*What’s the value of the VEP test? It picks up extra crossing of nerves to opposite side of brain but does not factor/calculate visual acuity. It is handy to diagnose/confirm albinism in patients.

*Should you see a low vision pediatric ophthalmologist as well? Never hurts to do this, second opinion is always good. They are hard to find because they are very rare.

*Tech devices for magnification and such are best to begin early on before the child get to be 5-6 years old. They may reject one device early on and then come back to it later so keep trying.

Friday, July 13, 2012

NOAH Conference 2012


NOAH. Months ago when I booked our tickets to the NOAH conference it felt so far away, a distant dream to attend to learn more about our little Liam’s condition....it felt like the day would never arrive.
Then it did.
Now that we are here, it seems like it is flying by to fast, almost over and yet we just arrived.
I had planned to share in “long story short” mode, summarizing each session at the conference in just a few lines but after attending many of them today I feel like that would not do them justice. Each had soooo much knowledge to share with us and each of us three took different things from each session that could help those who could not go this year.
(Three being Brian, myself and Gigi aka Brian’s mom/Liam’s grandma)
So I think instead I will stretch the posts out over the next few days going over each individual session after I have gathered all of our notes so that if you were not there you could possibly feel like you were...or at least like you’re reading the “clift notes” for it.
Now each hour has several sessions you must CHOOSE from so we were not able to go to all of them though we did split up several times, but we did try to go to the ones we knew would help the most people/friends of ours and us personally with Liam. That means that most of  these sessions are tailored around parenting small children or just parenting in general.  We did not attend the young adult or career professionals group sessions though we did speak to many of them to get an idea what Liam might one day face in that department. (More on that later as well.)
I will start posting hopefully on our drive home Saturday/Sunday, but heads up it’s coming! And if you are at the conference please find me we would love to connect and chat! Just look for the little boy in glasses running the hallways with his Gigi, when the others are all in sessions, we won’t be very far!
-Amy