She Can’t be 2 ALREADY!

In approximately 12.5 hours, my baby will be TWO!!!

I am just not ready. 🙁 It’s just awful for me really. All of my babies are growing up too quickly, but Lyra is my last baby. Even thinking about her not being a baby anymore makes me cry.

Ahhhh… I’m just a big sap.

Even though this past year has FLOWN by, it has been a great year. Lyra has really developed her personality. She is happy and fearless and determined and opinionated and usually a total ham. Oh…and she LOVES her Daddy…I think more than she loves me. 😛

It seems that after the first year, all of the little milestones seem to blur together. I know she’s learned a lot and done a lot of new things, but it’s hard to put dates on anything. Her field of vision continues to expand. A couple of weeks ago at church, Lyra was in the nursery and she saw a picture on the wall of a baby and she pointed to it and said “a baby.” She was TEN feet away from the picture. It was so awesome. 🙂 Obviously she has overcome her difficulties with pointing. Oh yeah, and she recently got her second pair of glasses. She is wearing them in the picture above.

She has done so well over the last year with her gross and fine motor skills, that as of this month, we are changing her Occupational Therapy to only once per month. Lyra can point, put, pinch, pick, throw a ball (and many other things), scribble, and eat with a spoon! (why do so many of the fine motor skills start with P) Lyra can walk forwards and backwards, run, walk upstairs using the wall or hand rail, walk downstairs holding a hand, kick a ball, twist and wiggle, jump with both feet off the ground, and climb EVERYTHING! 😛

Overall this year, she has been successful in mastering her environments…at least all of her inside environments. The only time I ever see her struggle is when she is outside. It’s funny though…she LOVES going outside! She will bang on the sliding glass door if her brother or sister go out without her. She says “outside” a lot too, which is cute because she says it with such yearning. Whenever we get ready to leave or just go outside, she always says “hat” to remind us that she needs her hat to go outside. I love it! It’s only been over the last couple of months that her language development has just EXPLODED. We’re still working on the communication aspect of it, but she definitely knows a lot of words now.

So starting tomorrow, (I guess it’s already tomorrow) Lyra will be off to master her outside world. I suppose mommy will just have to loosen those ropes a bit.

Light box





Lyra has been been working on activities using a light box during her last few sessions with her TVI. Specifically she has been working on shapes and color sorting. Using the light box really motivates her to sustain her attention to an activity for a longer period of time. It makes the learning activity more fun and visually stimulating.

Illuminating the colors and shapes makes them easier to see. Because she doesn’t have to work so hard to SEE the objects, she is able to focus more of her energy on learning the actual colors and shapes, i.e. cognitive learning.

Here is some useful information I found on the website for the Texas School for the Blind & Visually Impaired.

50 WAYS TO USE A LIGHT BOX

By: Michelle Clyne

Please take care to incorporate the use of the light box into some sort of routine…..teach parents, caregivers and other teachers how important this is, otherwise, it’s just “VI time”, and that is only good for the VI teacher, not the students we serve. No offense to anyone, please!

50 WAYS TO USE A LIGHT BOX (Lyrics with apologies to Paul Simon)

For eating, use the light box as a table:

  1. Juice in a clear cup or bottle will glow and encourage reaching.
  2. Scatter m&ms on the surface (know your audience!)
  3. Scatter cheerios on the surface
  4. Scatter small or large crackers on the surface.
  5. Set a table by having child match place, cup and spoon with a transparent outline of these objects on the light box.
  6. Set plate with slice of bread, container of light colored jelly on a light box, (apricot suggested), help child shift gaze from jelly jar to bread as he or your takes jelly to spread on bread.
  7. Jello in clear container will glow.
  8. Help child mix colored soft drink mix into a clear glass of water and watch the color develop.

Art, using light box (covered in clear plastic as easel or table:

  1. Finger paint onto parchment paper with foam paint.
  2. Paint with dark colored pudding
  3. Paint with whipped topping on red or blue transparency.
  4. Use watercolors on parchment paper.
  5. Sprinkle powdered tempera paint on parchment paper; help child spray on water and watch color spread and swirl.
  6. Roll clay into strings and lay out in interesting shapes on light box.
  7. Use Wikki Sticks to make raised line outlines.
  8. Use “Smelly” markers on tissue paper.
  9. Make a necklace using beads and string (APH)

Simple reaching:

  1. APH “Spinner” motivates reaching to start or stop the spinner.
  2. Slinky (connected to handle and hanging over lighted surface, wrap other end onto student’s wrist to encourage arm movement.
  3. Stack up blocks so that simple arm or leg movement knocks them down.
  4. Leave a koosh ball on the light box
  5. On a large light box, put pressure switch attached to a vibrating pillow. Position the child so that slight pressure on the switch makes the pillow vibrate. Help the child shift gaze between the pillow and light box.

Movement difficulties:

  1. Adult helps with any of the activities here when the child signals the adult to continue
  2. Student uses adaptive switch to turn on the light box.
  3. Small infants can be positioned prone on the light box for Tummy Time.
  4. In supported 90 degree sitting, a small child can crinkle mylar paper under their foot or feet while they rest on a light box.
  5. Have child eye point to choose 1 of 2 items lined up on light box.

During class:

  1. Make transparencies of circle/calendar time pictures and show on the light box.
  2. Make transparent digital pictures of classmates and familiar adults, show them using light box, asking child to identify “so and so”.
  3. Have child construct daily schedule on light box using pictures made into transparencies.
  4. Count manipulatives lined up on light box.
  5. Tracing letters onto light box. Bold marker on lightweight paper taped to light box.
  6. “Sense of Science” (APH) overlays can encourage gaze shift, recognition, etc.
  7. Do sorting activities on the light box
  8. Choose rhythm instruments by the outline they make on the light box.
  9. Use light box to highlight dark lines that need to be cut for scissor projects.

Daily Living Routines

  1. To get dressed, put sock and shoe on light box, have child eye point to item needed next.
  2. Put wash cloth and tooth brush on box, ask child to choose which they want to do first. Choose with eye pointing, finger pointing, naming, switches……
  3. Before going to doctor, store, etc, show child transparencies of those activities on light box.

Make believe play

  1. Put dress up items on light box. Have child identify items and choose how they want to dress up; i.e. baseball cap vs. construction hat.
  2. Put play hammer or similar object next to play area so that child can choose to play house or play construction.
  3. Trace outlines of make believe characters/action figures to make pictures of them, then use picture to write a story.
  4. Tell stories with pictures by using real objects on light box to create a “shadow Puppet” type of performance (for example, twigs make trees and a “Barbie” type doll becomes Goldilocks).

Other activities

  1. With and adapter, look at a “Discovery Light Book” on the light box.
  2. Play “Break the Ice” on a large light box.
  3. Play hands only “Twister” with a transparent color circle overlay on the big light box.
  4. Play table top hockey (quarter with fingers) on the large light box.
  5. Make a woven pot holder putting the loom and loops on a dimmed light box.
  6. Thumb wrestle with a friend on the light box
  7. ASK THE CHILD WHAT THEY WANT TO DO!

Whole Lot of Shakin’ Goin’ On

Okay so I found some time to make this video.

This is my attempt at zooming in on Lyra’s eyes so that you can see the degree/severity of her nystagmus. I apologize for my crappy camcorder skills. Between me not holding the camera steady and Lyra’s wiggling, it’s hard to know what shaking is actually her nystagmus. Every once in a while I was able to catch her holding still with her eyes wide open. Look for those moments and then you should see her nystagmus.

The first part of the video was filmed in the early afternoon and the second half was right before her bedtime. Sometimes her nystagmus is more noticeable when she is tired. See if you can tell a difference. I couldn’t. 😛

Nevermind my singing…LOL… I promise I really do have a degree in music education. 😛

Vision Update

I have been meaning to post this for several weeks. Lyra visited her pediatric ophthalmologist for a check-up last month.

They dialated her eyes this time to see if her refractive error had changed, and it did. Her prescription changed from +2.50 to +3.25 in her left eye and from +2.75 to +3.75 in her right eye. It’s not a huge jump or anything, but to change that much in only 6 months freaks me out just a little. Dr. Grin said her biggest issue is her astigmatism. She said it is fairly common for people with albinism to have a significant astigmatism.
So she is getting new glasses. We decided not to get her the transition lenses this time. With Lyra becoming more comfortable outside, I worried that the transition lenses just wouldn’t be dark enough. Instead we are getting her a pair with clear lenses and also a pair of prescription sunglasses. Hopefully we will have them in a week or so.

The health of her eyes is good, no problems there. Dr. Grin said the alignment of her eyes still looks great and her nystagmus is very minimal. I’ve said this before, but I rarely notice her nystagmus at all. I often wonder how this compares to other kids with albinism. I say her nystagmus isn’t that bad, but what does that mean really? As soon as I have some time (Ha Ha), I am going to get a close up video of her eyes and her nystagmus and post it on here so you all can see exactly how bad or not bad it is.

As far has her functional vision progress goes, I have just one thing I want to mention while I’m thinking about it. 🙂 She is doing really good with walking up and down steps inside on her own. When walking up or down steps outside, she is extremely hesitant and ALWAYS needs help. She clutches my finger tightly and I have to say “step” for EVERY step so she knows to feel for it with her foot and then go up or down. I really don’t think she has a clue where the next step is. It just tells me how much her sensitivity to those bright lighting conditions can affect her overall visual abilities.

New Sun-Protective Clothing

I was browsing through the catalog I received yesterday and found that One Step Ahead has some new sun-protection items.

I am definitely going to get the outfit in the first picture below. We bought last year’s version, which was actually a one piece, but still similar. I’m pretty sure it is made out of the same material. It is VERY light weight and breathable. It doesn’t get hot and sweaty and sticky like t-shirts do during the hot summer months in our extreme Kansas humidity. One Step Ahead describes the clothing as “cool and comfortable, breathable, quick-drying, and antimicrobial. It is UPF 50+ protection.

UPF stands for Ultraviolet Protection Factor and is used to measure the protection factor of clothing like SPF is used to measure the protection factor of sunscreen and make-up.

The outfit in the second picture is really more of a wetsuit. It has the same UPF protection and is also salt, and chlorine resistant. They have a lot of other sun-protection clothing items in their Sun Smarties collection which I LOVE.

I also found a really neat outdoor sunshade/tent. That is the 3rd picture below.

You can find all of these online at One Step Ahead. Just do a search for “Sun Smarties” to find the clothing and “shade” to find the tent.
If you go to the One Step Ahead online store through I-Give, then 4% of your purchases is donated to NOAH and it doesn’t cost you anymore. You can get to the I-Give website from the link below.

NOAH I-Give

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Bubbles Bubbles…Pop!

Lyra has been exceeding all of my expectations with her vision. She has seen things or done things I thought would never happen. Like all kids with albinism, Lyra has multiple eye problems that contribute to her overall low vision. One of those is nystagmus which is an involuntary rhythmic shaking of the eyes. Lyra’s nystagmus is very mild most of the time, but it gets worse when she is concentrating hard or tired or not feeling well.

Tracking or following moving objects can be very challenging for someone with nystagmus. Seeing something that is clear or “see through” when you have low vision is also a challenge. Playing with and popping bubbles in the air is an activity that requires BOTH! It is something I could have never imagined Lyra being able to do. It was one of the many things I’ve thought about in the past….things I’ve worried about…worried that Lyra would never get to see and experience. They’re the little things we take for granted.

Well Lyra CAN pop bubbles…and chase them and point to them and stomp on them and even try to eat them! 😀 She was even able to follow and point to bubbles I’d blown when we were playing outside…in less than optimal lighting conditions.

I am thrilled that Lyra is doing so well, but I’m still always on guard. I’m not going to hold her back, but at the same time I don’t want to expect too much because I don’t want to be disappointed. I get so excited when I see her able to really see things that I wouldn’t expect. I’m definitely more hopeful for the future. With that hope and my prayers, someday, maybe she’ll get to see that shooting star after all. 🙂

Early Session with TVI and OT

This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

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 UKAn 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 BlindOffers 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 SungearLarge 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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