Tag: children with albinism

Resources

Albinism Information

NOAH -The National Organization for Albinism and Hypopigmentation- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.

Albinism International -An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.

Albinism Fellowship UK –An organization that aims to provide information, advice, and support for people with albinism and their families.

SARA Foundation -Supporting Albinism Research and Awareness- A site created to help parents who have children who are diagnosed with albinism.

Positive Exposure – Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.

The Hermansky-Pudlak Syndrome Network Inc. –The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

American Nystagmus Network –A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.

Hadley School for the Blind –Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.

The Low Vision Gateway -A comprehensive list of low vision resources from around the world.

Vision of Children -Information about current medical research, outreach, and education.

NAPVI -National Association for Parents of the Visually Impaired- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

Alana’s Albinism Site

Amber’s page

Emerson Porter

William’s Site

Joseph Andrew

Skate Angel

Life in Noodletown

Ramblings of Casey

Websites/Blogs of adults with albinism

Heather Kirkwood’s Blog

Bianca Knowlton’s Site

Nicole’s Site

Annette’s Blog

Commercial Websites

Solar Eclipse -Sun protective clothing

UV Sungear –Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.

Baby Ride -Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.

Sun Togs -Sun protective clothing for all ages and cool kids sunglasses.

North Solar Screen -Various types of window tinting and window shades.

Llumar Window Film and Window Tint – Professional glass film/tinting for home or auto.

Industrial Shadeports – Custom build shade structures

Protect-a-Bub – Sun protective clothing and accessories.

One Step Ahead -They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

SENSwitcher -Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.

Seedlings -A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.

Library Reproduction Service – Large print books for children and adults and Large Print reproductions of educational materials for special needs students.

Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.

Articles

Socialization and the Child with Low Vision

The Role and Function of the Teacher of Students with Visual Impairments

Coming Soon… more blurbs, more personal websites/blogs, commercial websites.


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Shop-Toys, Books, & Sun Protection

After working on this little project for over a month now, I am finally ready to present this to all of you:

Because of the unique needs of children with albinism, it can a very challenging task finding helpful products. I thought it would be nice if parents could find toys and books that are good for low-vision and also sun protection products all in one place. I created an Amazon store and then searched through the hundreds of thousands of products on Amazon.com to find the ones I thought were the best. My selections were based on my research, personal experience, and personal opinion. By no means is this the only place on the web where you can find these items, however it would take you long time to try to find all of these on your own. I will continue to add products over time, including increasing the number of toys for older children. In case you’re wondering, I earn 4% on all purchases made through my store. So this means I earn a whopping $4 for every $100.00 spent, so I don’t expect to get rich through this project. Any money we do earn will be used toward our trip to the upcoming NOAH conference in July.
Thanks for shopping!
Please email me if you have any questions or if you have any suggestions for products to add.

Click on the link below to visit my store:

Toys/Books/Products for Children with Albinism

Speech Evaluation & IFSP Update

‘Ehhhwhoa’ and ‘Buh-bah’= Hello and Goodbye

Lyra’s speech development is still delayed, and she has yet to begin receiving actual services from a speech therapist. This will begin next week. She was evaluated in October, but the evaluation was incomplete. In addition to that, staffing issues caused a delay in beginning services, so we had to get another evaluation completed by a different speech therapist. It has been frustrating to say the least. Hopefully everything will go as planned next week and Lyra can get started.
At this point, she’s just making gestures (thank goodness she learned a bit of ASL) and grunting. But she’s trying to speak- she’s using different inflections in her voice and chaining sounds together. She plays a game on the computer called ‘Giggle’ and when she wants to play it, she says “guh-guh”. ‘Hello’ in Lyra-speak is “ehhhwhoa”. Goodbye becomes “buh-bah”. She knows what ‘hot’ is, and to her it’s ‘haaht’. The word ‘yeah’ is a long drawn-out, whispery kind of “yeeaahhh”. It’s all about communicating, and Lyra is clearly displaying frustration in her ability to do that. Like any parent, I understand my child’s unique vocabulary better than anyone else, I just wish that Lyra could be understood by everyone else too.
You can view her Speech and Language Evaluation and IFSP by clicking the links below.

Lyra’s Speech Evaluation

Lyra’s Updated IFSP


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Lyra’s Updated “Business” Card

We have recently updated the “business” cards we had made a while back. We changed the pictures, replacing them with more recent ones. I also changed the wording on the back slightly. In case you haven’t seen the previous post about how/why we made these cards, you can view that post here: Here’s My Card

We designed and ordered them through Vista Print. They’re always having special deals and you can also get other types of personalized products; magnets, address labels, calendars, pens, etc. Below is a picture of the front and back of Lyra’s card.

Click on thumbnail to view full size.
Lyra’s updated “business” card

Getting Glasses

Lyra has developed enough of a refractive error to need glasses. They are for farsightedness and the strength is +2.5 in one eye and +2.75 in the other. Her PO was going to wait another 6 months. I asked if we could go ahead and get them, as long as there was not HARM in it, so that Lyra could get more “practice” wearing them. The doctor agreed and told us to try and get Lyra to wear them 25% to 50% of the time. We are excited and nervous at the same time. We are still trying to figure out a way to get our insurance to pay for them, so we haven’t actually GOT the glasses yet.

One thing I worry is that friends and family might assume that her vision is 20/20 once she has the glasses. These glasses will only correct her vision to a point, and do nothing for her distance vision.

I’ll be sure to post some pics when we get her glasses. 4th-a.jpg4th-b.jpg


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Here’s My Card

Here is an idea. Maybe I’m a little obsessive, but oh well. For anyone who has seen NOAH’s albinism info. “business card, you’ll notice I modeled ours after it. I first got the idea to make something like this after Lyra’s TVI told me about a parent who got sick of answering the same questions over and over again and decided to make bookmarks with information about albinism to give to people. Then I saw NOAH’s cards and knew I had to make our own. I am a strong believer in educating anyone who has questions or anyone who only knows the myths regarding albinism. These cards are really great to carry in my purse just in case. It saves us the stress involved in answering questions or responding to ignorant comments and quickly shuts-up the annoying people.card-front1.JPG card-back1.JPG


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Strabismus Surgery Success

Lyra before strabismus surgery Lyra after strabismus surgery
Before After

Lyra’s surgery went very well. I think she did better than I did. The surgery itself only took about 40 minutes and then she stayed in the recovery room about an hour. That was a really long hour for me to wait. I didn’t think it would take so long for her to wake up. We were home before noon. It’s amazing what they can do with outpatient surgery these days.

Her eyes weren’t as gross looking after surgery as I expected. The inner whites of her eyes were bloody, but it wasn’t constantly dripping or oozing blood or goop. Her eyes never got so crusty that they were matted shut. Her recovery and healing has been fairly easy. The pictures above are from a week before her surgery and then 2 days post surgery. They look pretty straight to me, at least for now. I hope they stay straight. I am constantly checking to see if they start to cross again.


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Her post-op check up with her pediatric ophthalmologist was a week ago. Dr. Grin said Lyra’s eyes looked good and were healing properly. She will go back in about a month for another check-up.

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