Thursday, December 20, 2012

Through Brian's Eyes

People say blog posts are supposed to be short and sweet, so my apologies that this is neither....
I'm not sure where to even begin this post, it's not at all what I enjoy writing here or what I ever thought I would put to paper.... This is where I write about Liam, about his diagnosis of Albinism with Nystagmus and our families struggles and triumphs along the journey of parenting a special needs/visually impaired child..... So what happens when you have a child and a husband who are both in this boat together?
From day one I remember several occasions where I begged and asked God to show me what my son sees, through Liam's eyes, hence the blog.... I never expected that he would actually show me through my own two eyes, less alone those of my dear husband.
Brian first started complaining of blurred vision and headaches, with a little light headedness, a week and a half ago. The following day he had hit his head at work and then come home to receive a massive headbutt from our son. It was so loud I heard the CRACK in the next room but Liam was fine, Brian was bruised but after the initial sting he did the tough guy thing and waved it off. Morning came with a major headache but we went on with work and dinner and bedtime routines. Several days past of headaches and "resting" his eyes before someone notices that he was winking and rubbing his eyes a lot. His response, "yea I've had double vision non stop since the day we headbutted and i hit my head at work" .... To this my response was "what hit at work," as I hadn't been told before.
The next day he was off to the doctor, insurance or not (which he is on the "not" side of that fence) where his doctor sent him to a optometrist thinking he might have cracked the bone above his eye. I arrived at the appointment just in time to hear the doctor say the words " you have nystagmus".
HAULT
Now if you've been following along on our wild ride on this blog, you know from our experience with Liam's diagnosis of nystagmus that we are now experts in the subject after all the long research hours and doctor visits. We also know that once started, nystagmus hardly ever just stops......causing double vision and blurred vision even legal blindness.
It is also something that is caused by severe head trauma or neurological disorders like MS, ALS, brain tumors, bleeds, etc.....
Since Brian wasn't born with it that rules out congenital, leaving us with acquired nystagmus and the list of causes for this are on a scale from harmful to fatal. None just good but some manageable.
So started the hour long questioning of the eye doctor, then the MRI which ruled out tumors, bleeds, and lessened the chance of it being head trauma.
This leaves us with neurological disorders..... And a day after Christmas appointment with the neurologist.
That my friends and family is where we currently stand, on the fine line of WE NEED YOUR PRAYERS.
So many have called, emailed, and text to see what we needed and how we are doing and we are so grateful! We love you all! But right now we just want to ask for your prayers. Brian is having to adjust to not driving and the constant vision loss of seeing double (and relying on me to read things to him and drive him around) as well as the fears of what lay ahead and what will happen if his vision is not fully restored. It's the same road we walked with Liam but yet so unfamiliar and different since, let's face it, Liam doesn't know any better and Brian knows exactly what he is missing.
It's a lot to take in, but one thing he has said is that he feels like he understands Liam and his sight so much better now having walked in his shoes... And through him all my questions about "how Liam sees" have been answered. Some I wish I had never asked, but glad to be able to see through Brian's eyes into Liam's. Through all of our eyes the world looks slightly different tonight that's for sure.
So we ask that you just keep us in your thoughts as we enter the crazy holidays and the great unknown, and we promise to update with more shortly...we love you all!
Oh and if you see my husband lurking around with an eye patch, be sure to toss him a pirate joke to lift his spirits. He will love it! :)
Ames

Saturday, December 1, 2012

Sensory Therapy


One of the biggest issues we faced over the past 6 months with Liam was his sensory issues. A fellow mom of a child with Albinism said it was like raising a child with a sensory disorder like Autism; we quickly figured out what she meant by this too. Our vision therapist reassured us that almost every child with a significant visual impairment/blindness has sensory issues that often even land them on the autism spectrum though they do not have autism. This is due mostly to the fact that they are tactile little beings, meaning they rely on their sense of touch (and sound) to navigate their world. When that is disrupted, like in loud noisy rooms or with too much touching or not being allowed to touch other things, it can overload them and lead to meltdowns. To avoid this she told us she would be working a lot with Liam on sensory therapies. Slowly from the things we saw her do with Liam in therapy, we were able to construct sensory stimulating situations at home to keep practicing with Liam.

Some issues we faced starting out: dislike of messy hands, dislike of certain food textures, dislike of noisy nursery rooms and situations, dislike of swings or uncontrolled moving....the list just goes on.

Now here are some things we started working with him on at home that have really seemed to help with his sensory issues (which are mostly invisible now to the untrained eye but appear on occasion.) We are always careful to watch when we think the situation will push Liam to a melt down (like nursery still does, and large gatherings with non familiar family).

  • Bubble baths- We had to really ease into this one with blowing bubbles and learning first to pop the bubbles. Once we did this he was easily comfortable with bubbles in his bath.

  • Swimming- At first Liam would only go into the water with me if he was firmly attached to my chest, legs wrapped around my waist. I had to really work on facing him outwards and getting him to relax and kick the water with his feet. Slowly, he started to venture further away from me, frequently coming back to gain more assurance from Brian or I.

  • Ball/Sand Pit- This was Gigi's idea when we first started out because at therapy Liam's therapist would get in the giant ball pit with him in her lap at every visit. Each time he would spazz out and claw his way out. Every week they would try again, easing in one leg at a time until his torso was in and he was fully surrounded by the little balls. We made our own at home with a cheap kiddie pool and a bag of the same plastic balls. (She said the balls were easier than sand but either served the same purpose.)


  • Playing in the Leaves- When it's too cold outside to swim, a big pile of leaves will still do the trick. This is just like the ball pit, submerging him in the leaves or sprinkling them over his head. Only because he can throw them back on us, did he eventually begin to love this!

  • Wrestling- It's simple but effective! The constant contact all over as he and his daddy wrestle along the ground, is a great sensory activity. 

  • Finger painting- One of my favorites! Read about it HERE.


  • Swinging- This we also did each week at therapy because it removes Liam's sense of control and would always send him straight into a meltdown. To get past this, we had to start with small movements in the swing, and make encouraging sound affects like WOOOHHOOOO and WEEEEEE!! The minute he started to panic we had to remove him from the swing. Each session he sat a little longer, until finally there was a giggle....then another.....and another. Right now , 1-2 minutes is our max, but for that 1-2 minutes we giggle with enjoyment.
1 minute in....happy face!
Two minutes in....starting to
get the "get me down!" face.


Thursday, November 1, 2012

Braille Shirts

Did I mention we are selling Braille shirts ?? Because we are.
Check it out!
www.liamsproject.org

Tuesday, October 30, 2012

Goodbye Tanning Beds.....

Tanning has always been a hot trend, more so with women than with men, but a hot trend for all none the less. When I was 16 I used to BEG my parents to let me go tanning in the tanning beds.  They held out as long as they could but eventually caved on the issue.  I was determined to get rid of my pasty white outer shell and trade it in for a mocha brown one.  Turned out, I tanned very well for being so pale.  I hardly ever burned, and it didn't take very many sessions to come out with a "golden glow" as they called it.  Problem was, when I stopped hitting the tanning beds, hello pasty pale--welcome back...not. When I got older, pre-Liam, I only tanned for events like beach trips, summer graduations, weddings, etc.
Then came Liam.
Over the past year of coming to understand and process Liam's albinism diagnosis, I have begun to think of our other future children, the ones with a 50% chance of also having albinism. Brian and I will welcome the idea of another child with albinism if it be in God's plan for our family, but then my thoughts turn to little girls.....little girls with albinism......little girls with albinism that eventually grow up and become little 16 year olds with albinism....and then my thoughts turn to that very first time I hear them ask...
"Mom why can I not/when can I start tanning?"
You see to society, tan is beautiful, not pale. No one in high school ever says
"I wish I were pale!"
So when the time comes, and it will come, what am I to say? How do I justify that pale is beautiful when all their mother wants to be is tan?  What happens when I explain the issue with their skin, how their skin will not tan, how it would only be painful and impossible to become tan or in their case lobster red. I can imagine the conversation going just like this:
"It's not fair mom, I'm the palest girl in school."
(Reinforce pale is beautiful)
"But I just want to be tan!"
(Reinforce pale is beautiful, God made her just the way she is.)
"I don't want to be pale!"
(Reinforce pale is beautiful, God made her just the way she is, and remind her she is not alone in this.)
"It's not fair mom, you get to be tan! I want get to tan like you!" (Not that any kid in high school ever wants to be like their mom but you get the idea.)
Insert heart break here......
How....How do you justify and explain this to your 16 year old daughter? My 16 year old self pulled out a similar complaint and I know looking back no response would have done the trick...

To me, and this is my own personal belief, it is not enough to just tell my children, my pale children with albinism, that I think they are beautiful.... I need to show them I believe it. Show them I desire to be just like THEM not society's version of beautiful. That I believe my own pale skin, though tan in comparison to their's, to be beautiful and just how God made me.  That I disagree with society and desire not to change my pasty pale skin.

I want to be like the moms who shave their heads for their children with cancer, showing them beauty is not in a girls hair or any other outer embellishments ..beauty is deeper than skin and hair, make up and jewelry.  Beauty is what is on the inside. So to do that, I must try to embrace my pale outer shell so that one day I can show my daughters that OUR outsides are beautiful just as our insides because they are just the way God made us.
Pale is beautiful.............[and it's about time society discovered this as well]
So goodbye tanning beds, hello pale! Welcome back! Even in the face of two summer weddings, you'll do just fine for this mom.


Embracing it, even in short bridesmaid dresses!

Sunday, October 28, 2012

The Partners Print/Braille Book Program

We are approved!!! Liam was approved for the Partners Print/Braille Book Program, a partnership between Dolly Parton's Imagination Library and the American Printing House for the Blind. The goal of Dolly Parton's program: to provide six books a year, every year of a child's life up to six years of age, to encourage early reading and a love for books in small children. The goal of their partnership with American Printing House for the Blind is to provide these books in Braille for children with visual impairments.
We had almost forgotten that we had applied in the first place, since they have a decent waiting list, until we received our first braille book in the mail. We are so excited to be receiving these books to work with Liam on his Braille as he grows. One day this boy will love to dive into a book just like his parents do, only his books with be much thicker with their textured pages.

If you'd like to submit your child for the program please visit:
http://www.aph.org/dolly-partons-imagination-library/

Saturday, October 27, 2012

Like a Fancy Old Typewriter.......

Our new Braille Writer!! 


We were so blessed by someone at our local school for the blind to get a great deal on this sweet piece of technology. Right now it's mostly helping mom and dad study their Braille, but hopefully, before we know it, we will be using it to teach Liam his Braille. So neat the technology they have these days!

Thursday, October 25, 2012

Help For Those with Albinism

Notice the new link above? 



.... That's all the explanation I'm giving for now, you'll all have to go check it out for yourselves. 

Monday, October 15, 2012

White Cane Day

October 15th is international White Cane Safety Day. It's purpose is to celebrate the independence of those with blind and visual impairments. It celebrates the success and achievements of those in the blind and visually impaired community and the tool for their independence- the white cane.
Also called Blind Americans Equality Day, it's a day that I never even knew existed until Liam came along, but that will be celebrated in our house from here on out.
So Happy White Cane Day all!


(Extra fact: The 3rd week in May is national Whit Cane Week, slightly ironic that Liam was born the 4th week of may just missing White Cane Week by three days!) 

Sunday, October 7, 2012

Starting Our Texture Book

 
A texture book is something that a lot of visually impaired/blind children enjoy playing with when they are young since they often explore the world best through touch.  They are very good for use in therapy with children of all sorts of disabilities that focus on the use of other senses other than just sight and sound. I have been trying to collect different textures over the past few weeks to put into a large book for Liam and so far I have collected the basics: soft, rough, smooth, and what I call fuzzy/ticklish. I know there are many more textures out there to be found but these I found so easily in Hobby Lobby's paper crafts department; put them together with ring binders and there you go! A homemade texture book! I know you can buy huge kits for fairly cheap online that come with many different textures to teach children, but I thought I would just form my own based off what I could readily find. Cheap, fun to make and fun to add to over time!
 


I should add I used:
Glitter paper (rough but better than sandpaper)
Foam paper (smooth)
Felt (soft)
Strips of feather fur (layer them for better texture)
And I will be adding several in the next few weeks for other textures such as grainy, slimy, sticky, velvety, and crinkle.

Friday, September 28, 2012

And The Books Go To.....

By random selection (thank you random generator at random.org) Kristine is our book winner this week!! Thanks for your great book suggestions Kristine and all you other ladies as well, we will be doing some book shopping in the near future for Liam! And for those who didn't win this week I will be giving away more books shortly! Hang in there and thanks for the great suggestions and participation!
Congrats Kristine!!

Monday, September 17, 2012

Giveaway Books for Visually Impaired Kids

I know it's Monday and you are all thinking... It's Monday where is it? Where's the next giveaway?? Okay, sorry twist my arm, Monday got away from me, far far away from me, but here it is!
I will keep this simple...
Over the past year we have found that the best books (besides Braille books) that most visually impaired kids really pay attention to, are high contrast books and LARGE books with LARGE print and pictures. This is very true for Liam and lots of other parents we speak with say the exact same thing about their kids and picture books. We have noticed that sometimes these books are slightly hard to find in stores so we decided we would give away a few of them!
So we picked Liam's absolute favorites only.... Ones that he will never put down once you have read them just once to him, begging to have them read over and over again until we distract him or hide the book. (Seriously, we have read each several hundred times at the least !)
So you know the drill, post below with a simple idea for another book you think we should try with Liam; either a large picture/print book or a high contrast book. Extra points for followers or Facebook/twitter repeats. Winner gets both the high contrast book by Tana Hoban and the large picture book by Eric Carle. Reviews can be found on our book bin tab to the left.
Good luck to all! Winner will be announced Friday night! See you all then!

Friday, September 14, 2012

And The Winner Is.......

Alright guys, so before I tell our lucky winner please know if you did not win this Monday morning, bright and early, we start another giveaway in honor of National Albinism Awareness month so try try again!!!
Monday's giveaway will be a collection of various high contrast children's books from two of our family's favorite authors! I can't wait!!

So without further babble ,
The winner is..... Bonnie and Daniel!! So great seeing that your son helped you win Bonnie!! Great team work guys! We will be getting with you to mail out your custom Braille shirt soon!
Also, I need to correct an earlier statement as the money from these shirts Jen makes does not go to the Foundation Fighting Blindness but to the RDH12 Fund for Sight organization started by Jen and several other families affected by this rare type of blindness affecting the RDH12 gene. From there the money goes straight into research that is leading the fight for a cure. So for those still wanting a shirt please stop by Jen's site and check them out! It's a great cause and a great group of families fighting for the sight of many, and they can't do it alone. Thanks all for participating and congrats Bonnie!!

Friday, September 7, 2012

GIVEAWAY Braille Shirt!!

Several weeks back my hubby and I purchased some crafty hand-made Braille shirts from a fellow mom blogger and mother to a visually impaired child over at pletcher5journey.blogspot.com/. Jen has a beautiful daughter named Finley who has a rare eye disorder called Lebers Congenital Amaurosis (which you can read more about here and here), that will eventually cause her, over time, to completely lose her sight. Upon hearing this news, Jen did what any mom would do and started finding ways she and her family could assist in the fight against time for a cure. Jen took to making customized Braille items to raise money for the Foundation Fighting Blindness and when we found her page shortly after Liam was diagnosed, we just had a heart to help by purchasing our whole family these shirts. After hundreds of people have stopped us to see what the shirts say and the reason we have such unique shirts, we realized she was also spreading awareness for a common cause for all visually impaired and blind individuals. 
Any parent would move heaven and earth if they could to save their child's right to a SIGHTED childhood, so we decided to help spread the word about Jen's fight for Finley's because it literally is a race against time. 
So, for the challenge..... Since Brian and I are currently learning Braille (since Liam will one day probably be a duel reader reading both Braille and large print books) we decided to drag you all along for the ride. 
Look at these pictures....


 






 
 
 



Now I bet you are all wondering the exact same question .... "Amy what do they say already?" 
Well that's just it.....To qualify to win a customized Braille shirt from Jen's shop you must post the text in Brian's shirt BELOW into a comment box on this post. It MUST be correct and the only ways to get extra points are listed below with the rules! Good luck and get going!!!


 


















The rules:
No sore losers
Winners shirt custom text must be of "do-able length" and no profane words
Competition ends Thursday the 13th!!!!
Winner will be announced the following day (Friday) 
Color choice pending availability 


For extra points:
Do my shirt as well 


















Do Liam's shirt



















Go visit Jen's page for Finley and leave her a hello message
Follow throughliamseyes.com 
Repost about the giveaway on Facebook or/and twitter 

http://www.finleyfighters.com/
http://pletcher5journey.blogspot.com/


Saturday, September 1, 2012

New Reason to Love September

I bet you didn't know that September is my favorite month of the year did you? Among many reasons are: the start of Pumpkin Spice Lattes at Starbucks, the first day of fall, my mom's birthday, tights and boots, and one recently very important new reason...... 

It's NATIONAL ALBINISM AWARENESS MONTH!!!!! 


That's right, so in honor of NAAM the will be hosting several giveaways throughout the entire month! 
A sneak peak you ask? 
Well ok here's a clue- shirts, books, cards, flash cards just to name a few!
So stay tuned, the gives start this coming week! 
First up will be special Braille shirts from a friend and fellow parent of a visually impaired child and you won't want to miss it! 

Tuesday, August 7, 2012

The White Cane

Recently at the NOAH Conference, we noticed a lot of people, even children, with albinism use a white cane for walking and some even used service dogs. We talked to several people to ask what age they started using these assistance aides and many told us the younger they started with them the better they did and more comfortable they felt with using them. Everyone we spoke with told us to get Liam started ASAP with an Orientation and Mobility Specialist, who would train him to use these devices and other things to improve his day to day life as he gets older. O&M specialists help with many things like landmark recognition, voice directions, step counting, mastering stairs, locating items in a store, depth perception, and cane or assisted travel,etc. Our local school for the blind is going to be evaluating Liam in a few weeks to see how often he will need this training but for now we decided to take the other parents advice and get Liam a small "kiddie cane" to practice with at home and outside. Most likely from what he heard from others Liam will only need his white cane when he is in new, unfamiliar places or overly crowded environments but it's typically a must have for individuals with albinism as far as we were told. So here are some pictures and videos of Liam's first kiddie cane. He loves having it for outdoor steps already and to push into toys all over the house. If we can just keep him from hitting things/people with it for now we are doing good!! Never hurts to start them young though!



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.