Monday, August 30, 2010

Amblyopia Poem: "A is For Amblyopia, Allergies, and Asthma,Too"

I found this poem the other day when I was.. surprise surprise.. googling away for more info about amblyopia.  I had to share it.




"A is For Amblyopia, Allergies, and Asthma,Too" An Alphabetic Poetic Celebration of Differently-Abled Children by Tammy Z, Movsas, MD, MPH

Sunday, August 29, 2010

Thoughts from the COVD Webinar with Dr. Sue Barry

A couple of nights ago I attended the free webinar that COVD  put on with Dr. Susan Barry, author of  Fixing My Gaze: A Scientist's Journey Into Seeing in Three Dimensions.  The webinar was entitled "School Crossings: ...A Neurobiologist's View of How Our System Fails Children With Vision Problems". With August being National Children's Vision and Learning Month, and my child headed off to school in the upcoming days, the webinar was particularly timely. 

Having read Dr. Barry's book, I am familiar with her story and hold her up high as an expert in the field of Vision Therapy and the brain/eye connection.  Amblyopia, after all - is a neurological disorder. For me, it is not the first neurological condition that I have had to dig deep with and learn as much as I can. My son has autism, which - oddly (or not so oddly enough) was another topic that came up during the webinar with Dr. Barry. For more info on autism & vision issues definitely check out the College of Optometrists in Vision Development research.

The August 26th "School Crossings" webinar consisted of Dr. Sue Barry and Dr. Leonard Press having a conversation that lasted about 30 minutes followed by brief question and answer.  It began by Dr. Barry sharing her story of growing up without stereo vision. The first thing she addressed had to do with learning to read and the struggles that she had. She illustrated how a child who has convergence insufficiency will struggle with reading. In simple terms and via very easy to read diagrams she showed how someone with normal vision would read a single word and then how someone like her, or like my daughter would see the same word.   Dr. Barry struggled with reading yet she loved to read and her mother encouraged reading. She has her mother to thank for being able to read - albeit slowly for many many years, until she improved her stereo vision.  She boldly shared how educators labeled her "a dim bulb" and put her into special education classes with children who had written off by the system.   When I think of Dr. Barry - the last thing I think of is a dim bulb.  She is highly educated, a professor in Neurobiology at Mt. Holyoke, an established author. Yet as a child, she was written off. And, thankfully - she overcame it.

I don't want my child to be written off.  My daughter is struggling to learn how to read.  She loves books and she loves to be read to.  When we work with her on reading she tells us it is too hard.  She isn't lazy.  She isn't stupid.  When I sat in on the webinar and watched Dr. Barry illustrate on the screen how my daughter could be seeing words vs how I see and read words - I had a moment. I have often shared how I felt her struggles with reading and writing had to do with her eyes, but I didn't realize just how difficult of a mountain she has to climb here.  Dr. Barry also shared her struggles with driving and how at one point she just opted to walk everyplace vs risking driving.  I hadn't given much thought to driving as my daughter is only 5, but yes - that is also just more reason that we need to get her binocular vision functioning.

You can listen to Dr. Barry's NPR interview and learn more about her at: Do You See What I See? A Scientist's Journey Into 3-D
 
I also highly recommend picking up a copy of Fixing My Gaze: A Scientist's Journey Into Seeing in Three Dimensions (now in paperback).

To Patch or Not to Patch (At School).. That is the question

So, next week my daughter starts kindergarten.  The program here is halfday and just a few hours long. She is in the AM class and should be home by noon.    Our patching regimen is 6-8 hours a day. 

The dilemma:
  • She doesn't want to patch at school.  
  • A part of me says to let her patch at home after school. Another part of me says she needs to patch at school.
We COULD patch after school but it would mean patching as soon as she got home and right up until bedtime.   This is what my daughter would prefer as she really doesn't want to patch at school. Socially the patch really upsets her. Even though she is a strong little girl who is quite confident, the patch definitely cuts into who she is and how she feels about herself.  Also, I recently found out that one of the children who is going to be in her class is someone who has been a problem before and called her names including "one eye" and teased her.  This is just wrong!

The problem is that patching after school we are going to have a hard time getting in all her hours consistently because of after school activities like dance class, etc.   I also feel that if she patches at school the types of activities they do are beneficial activities for her vision.  She is also having a hard time with reading and writing and so it is my hope that if the school sees her struggles she will get the extra support she needs. (I plan on meeting with the teachers and Child Study Team about this) - and she is in a kindergarten class that has 2 teachers so this is a good start.

Ultimately, I feel that we need to patch at school which means letting my daughter down. I also know that we need to do something with the class and the teacher to help explain her patch. We did this in Pre-K and it went pretty well. She brought in books and she talked about the patch. We also had an individualized health plan in place. 

I'm also perhaps overthinking this - but should she patch on the first day of kindergarten or is this something that we introduce after she has had some time to settle in and I could meet with the teacher, etc?

Clearly I'm more of a nervous wreck about her starting Kindergarten then she is! 

Thursday, August 26, 2010

Krafty Eye Patch Coupon Code & Back to School Patching Tip

Krafty Eye Patches is having a "Back to School" Sale. 

Back to School Labor Day Sale
15% off all merchandise Today-Sept 7th
Coupon Code      Holiday15



If your child patches at school.  Deluxe kits are great to take to school.
Have classmates make patches for your child. Thank them for helping make your childs eye Strong.

Have the kids names written on the back of the patch they made for your child.  Everyday your child gets to wear a friends patch to school.  The kids love this and will be asking your child everyday to wear their patch next.

This will really help your child with wearing a patch to school.
No more teasing.  This will make them a star!!


www.KraftyEyePatches.com


If you haven't tried Krafty Eye Patches - check out our review of these fun and non-toxic patches "craft kits".

Book Review: The Pirate of Kindergarten

My daughter heads off to Kindergarten next week. So, when the children's librarian contacted me recently to let me know that a new book had arrived called The Pirate of Kindergarten , it was particularly timely.  I'd heard of this new book but had yet to read it. My daughter, who patches for Amblyopia, doesn't particularly like pirates or being associated as such. In fact, she has come to detest pirates and anything to do with them.  When she saw the cover of the book with a little girl wearing a "pirate" patch she had a few choice words to say about it.

The Pirate of Kindergarten by George Ella Lyon is the story of a little girl, Ginny, who sees double. She loves to read and she is your typical little girl but she sees the world in a not so typical way - two of everything.  This makes school and reading particularly challenging for young Ginny who finds ways to work around seeing double (she shuts one eye).  In the book a school vision screen uncovers her double vision (diplopia) resulting in an eye doctor prescribing glasses and the use of an eye patch - hence the name "the pirate of kindergarten".  In the story the eye doctor gives Ginny two different eye  patches - one pirate style and another that is worn with glasses. Pirate Ginny takes on Kindergarten seeing the world in a whole new way (to her) and is confident and successful (with an eye patch).  

Despite not liking pirates, my daughter was very engaged when I read this book aloud to her. She looked on at the illustrations and she actually held tight to my arm as Ginny's struggles unfolded. The illustrations (by Lynne Avril) are vivid and spot on.  The pictures are drawn as if from Ginny's eyes with two of everything - it is as if you are seeing the world as Ginny sees it.

The Pirate of Kindergarten opened up a lot of good conversation between my daughter and I about her vision. Belle was very curious and rather concerned about Ginny's double vision and asked if she was going to see two of everything. I explained that she shouldn't be seeing double - but that if she ever does she needs to tell me and her eye doctor right away. She also asked me if Ginny has Amblyopia like her because she wears an eye patch. And lastly, she wanted to know if she was going to have to wear her eye patch at Kindergarten because she really doesn't want to be "The Pirate of Kindergarten".  That topic, in itself, will be a blogpost in and of itself. Ultimately though, we have this book to thank for coming to a common ground about patching and some very difficult but sorely needed discussion about about how it makes her feel and why it is so important that she patches every day (whether it be in school or out of school). 

Even though my daughter doesn't want to be a pirate in Kindergarten, she likes this book. We plan on adding a copy of it to our bookshelf after we return our library copy.



Wednesday, August 25, 2010

Free Eye Patch Tutorial (Make your own using Craft Foam)

For those who wear the over-the-glasses style eye patches. Be sure to check out this great post with pictures over at Little Four Eyes to make your own eye patch (over the glasses style) using craft foam.  

Free Eye Patch Tutorial

Here are 2 other links on making your own eye patch:

Dr. Susan Barry - Special FREE Webinar on Advice to Parents 8/26

Special Announcement: COVD is hosting a LIVE webinar interview with Dr. Sue Barry 

THURSDAY - AUG 26th, 9PM EST/6PM PST



Dr. Sue Barry is also known as "Stereo Sue", the author of Fixing My Gaze: A Scientist's Journey Into Seeing in Three Dimensions 

School Crossings:
...A Neurobiologist's View of How Our System Fails Children With Vision Problems

Hear Dr. Susan Barry answer questions about difficult school experiences that resulted from her vision problems; how, for example, she was mislabeled as a low aptitude student and assigned to a special problems class, and what her mother did to help her child succeed. And more..... including what you can do to help your child succeed!

Please join us! Share this news with your patients, colleagues, referral sources, etc. Put the press release on your website, share the info on Facebook, Twitter, etc.

Most importantly - do it NOW! There is limited seating and once it's full, the meeting will be closed.

TO REGISTER FOR THE MEETING: Go to www.joinawebinar.com, fill in the meeting ID number 547-423-251 and your email address, click on "CONTINUE," then fill out the brief form that comes up next and at the bottom of that screen be sure to click on "REGISTER."
If you have ANY difficulty registering or any problems during the webinar, contact TECH support for gotowebinar.com at 800-263-6317.




Related Links:
Get Help from Stereo Sue - author of Fixing my Gaze 

Friday, August 20, 2010

New glasses for Big Brother

It was a week of eye appointments all around.  It began with taking my my daughter to the eye doctor where we learned that her eyes stayed the same they weren't getting better - but they weren't getting worse either. It ended with taking my son to his eye doctor, who specializes in children with special needs - where we learned his eyes also stayed the same.  It is funny how the same results for 2 different kids, 2 different vision situations completely - and one I was disappointed with - the other I was elated. 


I honestly felt that my son needed new glasses not just because his were "trashed" but I have noticed him squinting a bit.  He doesn't have Amblyopia - he is myopic and has astigmatism.  He is also autistic and he is incredibly rough on his glasses.  He breaks and loses more glasses than I can count and relies heavily on the use of an eyeglass retainer. I feel as if we live at the optical shop and have to get his glasses adjusted constantly. Eventually this past year I gave up and just had him wear his glasses retainer very tight - otherwise the glasses were so stretched out they wouldn't stay on his face. They also were pretty banged and scratched up. Screws had been replaced multiple times. I need to take a picture of them and add it to this post...

Turns out Alex's eyes only changed ever so slightly and he could still pass the test 20/20 with his old glasses on.  But, because they were in such bad shape we got a new script and went and got new glasses.   I found that it was hard to find glasses that fit him well.  He is too big for kids glasses but adult frames are too small.  The selection of "teen/junior" frames isn't as good.

We ended up with a pair of X-Games flexon frames in the "Ripped" style. Alex picked an attractive brown titanium frame.   He's lookin' good and I'm hopeful that these will hold up a bit better than his previous ones.  One can hope, right?

Tuesday, August 17, 2010

Do Carrots Help You See in The Dark?

Do Carrots Help You See in The Dark?

As a child my mother always told me, "eat your carrots - they will help you see in the dark.". When I became a parent myself, I wanted to look into this and see if it was truth or myth. My research revealed that this is a part truth. While carrots will not help you see better in the dark, they are on "the good list" for foods to eat that can help prevent the development of AMD, a leading cause of blindness. Ok, since we have this in our family medical history.. it means carrots should definitely be moved up on the veggie list.

The best foods to eat to help your vision

1. Choose those foods high in antioxidants. Studies have shown that AMD is linked to low levels of antioxidants, especially Vitamin E & C. An excellent source of Vitamin C is the obvious - citrus fruits, as well as kiwis and surprisingly Broccoli. For Vitamin E turn to vegetable oils, avocado, and nuts.

2. Load up on luteins (and zeaxanthin). For luteins and zeaxanthin - the best source is leafy greens like kale, collards and spinach. Eating whole eggs is also a good way to boost your bodies lutein levels (as well as cholesterol, so be mindful when eating too many eggs).

3. Seafood might be renamed to "See-Food" as the Omega-3's in fatty fish and zinc in shellfish are both beneficial to the health of your retina thus preventing AMD. Good choices for fish include salmon, mackeral, tuna, oysters, crab, and shrimp.

But what about the carrots? They are high in Vitamin A, and yes they are on the approved list.

Food List for your Eyes:
Avocados - contain lutein, Vit A, Vit C, Vit B6, Vit E
Broccoli - Vit C, Calcium, Lutein, Zeaxanthin, Sulforaphane
Carrots - Vit A
Eggs - Vit A, Zinc, Lutein, Lecithin, B12, Vit D, Cysteine
Garlic - Selenium, Vit C, Quercetin
Kale - Vit A, Lutein, Zeaxanthin
Salmon - Omega 3 fatty acids, Folic Acid, Vit D, Vit B6, Vit B12, Vit A
Sunflower Seeds - Selenium
Tomatoes - Vit C, Lycopene
Spinach - Vit A, Lutein, Zeaxanthin



This Article was originally posted (by me) at Bella Online Vision Issues

Monday, August 16, 2010

Patching Progress.. or lack thereof


So, after learning that Belle needed to patch again more intensively - she really wasn't a happy camper.  But, despite it all she has been trooper about it and has been wearing adhesive patches daily for 6-8 hours for the past month. She's only missed the 6 hour mark one time, which I'd say is pretty darn good considering we have had a completely crazy summer.  Today we went back to the eye doctor for a 1 month recheck to see if the patching was making a difference. 

Belle struggled again with the chart and kept saying C for S and getting a couple of other letters wrong. They switched to pictures and she proceeded to see things like "surfboards"  and "skateboards" --- items that are not on the eyechart.  For those familiar - you know it has a hand, a horse, a cake, a telephone, and a bird.  We just smiled and didn't make like she was getting things wrong because she gets very discouraged easily. 

Ultimately the results were not the best. But, they weren't the worst either.  She made no progress in a month - things stayed the same. So, they didn't regress either, as they did previously. 

The doctor says more patching. He wasn't real surprised that we didn't see a lot of results in just a month, but last year when she started patching we saw results right from the get-go. So, this was a disappointment to both Belle and I - to say the least.  We continue patching and we go back in early October (6 weeks). 

We hope and pray for progress.

Tuesday, August 10, 2010

Eye-Doodle eye patch stickers - Wearable Art for eye patches

Belle's been wearing primarily adhesive patches since her last visit to the doctor when they gave us the bad news that her vision had regressed.  With summer and her doing a lot of things where she isn't always wearing her glasses, the adhesives are working out pretty well for her.  But, she hates the way the adhesive patches look which is why we've been doing anything and everything we can to make the patches "pretty" and fun.  

When I heard about Eye Doodle patch stickers, I thought these looked right up Belle's alley.  These are patch shaped stickers with cool art on them that are made to go right onto your eye patch. They work best on adhesive patches but I guess there's no reason you couldn't put it onto an over/under the glasses cloth patch or pirate-style patch (though the shape might be a bit different).  Eye Doodles were designed by a parent, Annie Agars, artist and parent of Julia who was born with a cataract and patches daily.  The pictures are bright, colorful, vibrant, and "cool". They encourage people to look with good eye contact which in turn helps the wearer establish good eye contact of their own.

Eye Doodle stickers are disposable and made for daily wear. A sheet of 8 stickers is priced at $3.75 with deals on the Eye Doodle website like buy 4 sheets get a sheet free and buy 8 sheets - get 2 sheets free.   They come in Left eye or Right eye designs and in a variety of themes like ocean, garden, holiday, creatures etc. There is a huge selection including some that may be more "boyish" and some that are more girly - though most could be worn by either a boy or a girl and none are babyish!  Belle picked out the sheets In the GardenWhat Little Girls are Made of, and Hearts & Stars. When she is wearing them a lot of people make comments about how cool her patch looks.  I like that they don't look 'babyish' and another friend told me that she thought they looked almost Ed Hardy-esque or tattoo-inspired, I guess I can sorta see that.  Belle likes the colorful drawings, especially the bird patches from the "In The Garden" sticker sheet. I asked her what she liked best about them and she told me "I like birds". Ok, that's the 5 year old for ya!  I say, if they help a child become more patching compliant they are a keeper!

Belle wears  Eye Doodle (over Krafty EyePatch) & playing computer games

For more info: http://eye-doodle.com/

Disclaimer: Thanks to Eye Doodle & Annie Agars for allowing Belle and I the opportunity to try out your eye patch stickers and share our experience here at Amblyopia Kids

Monday, August 2, 2010

Back to school shopping trends - glasses are "in"

So, the other day I took my kids over to Target to buy some birthday party gifts. And, being as Target is 'that store' that you can't get out of without spending 4 times what you intended to go in for.. I, of course, found some other cool stuff for the kids.  My daughter got a T-shirt for $5 that had a girl surrounded by flowers and she is wearing glasses (pic below). She also got a T-shirt with a rabbit wearing really big glasses - they had puppies too (that were wearing sunglasses though). I couldn't find a picture of  that one to share here, I'll have to post one of her wearing it - its adorable.  My son picked a T-shirt (green of course, his favorite color) that had a skull wearing 3D glasses.  On a more disturbing note I did find a T-shirt with a baby chick on it wearing glasses that said "nerdy chicks rule" and another shirt that said Proud 2B Nerdy.  Thankfully both of these were not girly or cutesy enough for my daughter so she didn't even consider them. I would have definitely not allowed it!

Over in the school supply section they had a ton of Paul Frank items  (the ones with the monkey) that also featured glasses.  My son picked a folder (because it was green) that had the monkey inside of  an oversized glasses frame and it says, "I don't see so good. Where are my glasses?". Inside it has pictures of the monkey wearing different frames (including 3D glasses the red/blue kind). 

What trendy items featuring glasses have you found?


Girls' Cherokee® Fresh White Short-Sleeve Graphic Tee XSGirls' Blue Short-Sleeve Glitter Graphic Tee LBoys' Mossimo Supply Co. Mint Short-Sleeve Graphic Tee Shirt SGirls' Paul Frank® for Target® Pink Short-Sleeve Julius Tee M

Purchase Amblyopia Awareness Items to support children's vision

Do you love someone with Amblyopia? 

Show your awareness by purchasing T-shirts, bags, magnets & other items from the Amblyopia Awareness shop hosted at Cafepress.  A portion of the proceeds will be donated to children's vision charities.

http://www.cafepress.com/AmblyopiaKids




Slogans include:
  •    I Love Someone with Amblyopia
  •    Eye Patches are not just for Pirates
  •    Eat Sleep Patch
  •    Peace Love &  Amblyopia
  •   Amblyopia Kids  - Outdoors &  Everywhere