Friday, June 22, 2012

Albinism in the News

There’s a new article out on Yahoo News this morning that I wanted to share….It’s very disturbing to me since we have talked about trying out public schools with Liam when he gets older and I would love some other parental feedback on it.

The family is seeking action against the school and rightly so I feel, as the children were badly sun burned during a school 5 hour outing during which they were REFUSED sunscreen and being allowed to return indoors.

As you read, keep in mind that one of the mother’s children has a form of Albinism. The family also had a form on file with the school alerting them to the child’s condition and how to care for her and her “sun allergy”.

Let me know your thoughts. You can also link through the article to the mother’s blog where she answers some questions like “why did you not give them sunscreen prior to leaving for school,” and “why did the girls not stand up for themselves knowing they were starting to burn.”

Here is the link:

Thursday, June 21, 2012

Homemade Flash Cards for Shapes

Started making my own flash cards for Liam this week. I decided to start with the basic shapes first in English and in Spanish and then move to colors, numbers, and letters from there. I used card stock paper to make them thick and then use self-laminating sheets to seal them from his sticky hands and drool. They are high contrast and have English on one side with Spanish on the reverse so that his sitter and I can work on them with him. We are in the process of purchasing a Braille label maker to put clear label strips with the Braille shape names on the cards as well so that Liam can go ahead and get used to the feel of Braille. I looked everywhere for some to buy but could not find any large enough for us so I just decided to make my own. We will see if they work!

Wednesday, June 20, 2012

Baby Banz Giveaway WINNER!!

First, let me say how excited and grateful I am that we had so many mommas participating in our first giveaway! Thank you all for voting and for all of the extra you did to show your appreciation for Baby Banz and their products. Thanks also to Baby Banz for sponsoring this giveaway and we hope we can do many more with them in the future!

Now, to announce the winner! I’m pleased to announce that Laura Love is our first giveaway winner of the Baby Banz products! We hope she and her little one enjoy the sunglasses and hat’s protection from the summer sun this year.

For those of you who did not win keep checking back with us, we are already planning another giveaway in three weeks for Braille t-shirts handmade by Jennifer Pletcher over at So stay tuned and thanks again for your participation!

Saturday, June 16, 2012


A few weeks ago I did a post (“Sun Protection for Kids with Albinism”) on sun protection for kids' hair, skin, and eyes, especially those with albinism, and the products our family has found most helpful in protecting Liam in this department. In the post I commented on our favorite sunglasses by a company called Baby Banz and how their strap-on sunglasses are amazing for toddlers and infants in the sun. Some of our main reasons for picking the Baby Banz sunglasses over other brands were:
1. A breathable, comfortable band with adjustable Velcro to fit perfectly on your little ones head.
2. They are shatter resistant (a.k.a. Liam-Proof)
3. Lenses offer 100% UVA/UVB protection
4. Neat, colorful designs to match any individual’s taste.
5. They were developed by a dad who took action to protect his son’s sensitive eyes from the harsh sun in Australia. (We love parents with a cause!)
6. The warranty. They back up their product!

(Basically, we just love them!)

Since then, Baby Banz has volunteered to sponsor a giveaway, here on our blog, to bless a lucky child with a pair of their amazing children’s sunglasses and a sun hat. The giveaway begins now and will close Tuesday night at 11:59pm (06/19/12).

How do you sign up? Well, simply answer the question below in the comments section under THIS POST….not on Twitter, not on Facebook, not via email….on THIS POST. Then if you’re in the mood to score some extra points after answering our question, here are a few extra options for you:
1. “Like” the Baby Banz page on Facebook –CLICK HERE
2. Subscribe to Baby Banz’s blog –CLICK HERE
3. Subscribe/Follow –CLICK HERE and/or HERE
4. Follow Baby Banz on Twitter – @babybanz
5. Post about the giveaway on your Facebook status
6. Post about Baby Banz on your Facebook status
7. Click the “Share” button at the bottom of this site to share us on Facebook
8. Click the “Share” button at the bottom of our Memo to Mom blog to share on us on Facebook- You can link to the blog using the “Parenthood” tab above.
9. Subscribe/Follow us on our Memo to Mom blog by following the “Parenthood” tab above and clicking on the picture that says "follow us".

Each of these things will give you two extra points in giveaway but you must send me a message to show me which one you did. (Must show proof with the attached links.)
Wednesday morning check back with us and we will post an announcement of the winner and arrange for them to receive their free gift from Baby Banz!

So here’s the question, you may need to visit Baby Banz/s site to view all of their products in order to answer the question thoroughly.

What Baby Banz product do you like most AND why?

Now…why are you still reading this? Get posting!!

Friday, June 15, 2012

Lightbox Activities and Making Your Own Equipment

I mentioned before that our therapist fro ASB (Arkansas School for the Blind) was using a type of waterbag with Liam on the Lightbox to simulate fluid motion and work on his visual motor skills, and I also mentioned how I could not find these anywhere for purchase. Liam loved playing with the fluid, pushing the colors all over the light box and the floating fish inside the bags. I did end up finding a set of red ones for purchase but it was a set of lightbox activities and was very expensive. (If you want to check into these kits, click HERE to redirect to the American Printing House for the Blind website.)

Anyway, since we did not purchase the set, our therapist Pam gave us instructions on how to make our own waterbags. We made smaller versions of these this past week to test them out before we make more colors in the larger bags and after seeing how well they worked for us I thought I would share Mrs. Pam’s “recipe” for them. They work great for us and Liam loves to chase the “fishes” and mix the colors together and hopefully they will work for your little lovie as well.

Lightbox Activities
• Zip-lock freezer bags can be used on the lightbox to enhance looking behavior and to encourage visual motor progress. (Consider double-bagging to avoid leakage.)
• Only use lightbox and waterbags when lightbox is unplugged from charger.
• Fill the bag with clear hair gel then add several drops of food coloring. The color gets mixed as the child presses on the gel surface. The color, light and movement properties will attract the child's visual attention. Begin with a single color only.
• Add colored beads or cut out shapes. The slightest touch will create movement without auditory competition. Again, color, light and movement properties should attract the child's visual attention. Even the slightest touch will create movement of the beads facilitating independent interaction with the materials. Begin with single color beads.


Use Water
• Fill the bag with warm water and add drops of food coloring.
• Release transparent or colored beads into the water.
• Add bright, single color (later, two colors) shapes cut from acetate sheets. Shape punches from craft stores work very well or look for colored transparent objects that can be used in the zip lock bags from dollar stores. Select objects that have rounded edges so they do not rupture the bags. Bingo chips and small plastic balls work well.

(I think that she also mentioned that you can mix one with water and gel and then add the food coloring and objects to it as well but we did not test this method out yet.)

Additional Lightbox Activities
• Transparent containers used with transparent, colored objects can be used on the lightbox for visual-motor, placing, and sorting activities.
For sorting, cover the lid of the container with black paper, leaving only the shape opening uncovered. The light from the lightbox will shine through the opening creating a high contrast target for placement of the shape.
• A black grid and colored pegs (APH Product #1-08665-00) can facilitate visual motor, placement and sorting/matching activities. Remember to consider visual field function when presenting the activity and match color to the child's color preference.
• APH Familiar Object Pictures (APH #1-08666-00) are very helpful for recognition of two-dimensional information. These colored translucent pairs of pictures depict 15 common household objects that are very similar in form and color.
• APH Plexiglass Spinner and Patterns (APH #1-08664-00) can be placed on the lightbox and can be easily activated by touch and it does not have potentially distracting auditory input. Color may be added to the spinners to make them more CVI appropriate.
• Beginning puzzles can be made from black foam board and translucent color shapes (APH #1-08663-00). Start with single shape puzzles, favorite color shapes.
• Include other translucent, single color, non-auditory objects for lightbox play (plastic slinky was one we used in therapy)

***Also thought I would mention if you don’t have access to a Light box or want to spend the money to purchase one you can use an artists' tracer (the same exact thing, the light box used for therapy is just more durable and made to take a beating). We found a great artist tracer to use is the LightPad, which is slightly expensive but available at Hobby Lobby stores for 40% off with their online coupon. So paying instead of paying $99.99 you could pay $59.99 for the small one, or $83.99 for the larger one instead of $139.99. So if you can’t find a Light box just search for an artists' tracer/light tracer.

*Here are a few brands I found online:
American Printing House for the blind Lite Box
Art-O-Graph Lightracer
GAGNE Porta-Trace
The beginning.

With colors added.

Wednesday, June 13, 2012

Want Your Own Pair of These?-Our First Giveaway

Like our cool shades? Have an infant or toddler that needs a pair? Want to know how you can get a FREE pair? Need a cool sun hat to go with the free pair? If you said yes to any of these questions then stay tuned, we are about to host a giveaway. Our very first give away, sponsored by Baby Banz Inc., will begin in just a few days; so if you want your FREE pair of Baby Banz shades and a Baby Banz sun hat, then stay tuned.

Monday, June 11, 2012

Duct Tape Fixes Everything--The Scoop on the New Stoop

Depth perception.  For children with Albinism, one of the most difficult aspects of their visual impairments is depth perception. 
 Is the step up or down, or is there even a step at all? Is the tree two feet in front of me or two hundred?
 In early childhood this causes difficulty when children learn to walk and cannot see steps or drop-offs when they encounter them so, instead, they stumble over or down them.  

After watching Liam stumble down our ONE single step at our front door or at the ONE step at our back door, I knew that we would have to figure out a way to make the steps visible to him, or we were going to have more than a few smashed noses and scraped up hands.  One step should be simple, what happens when he encounters several? Since the problem was seeing the steps all together, we decided if we could make the edge of each step stand out to his eyes we could teach him that there was a step there.  
The first idea that struck us was duct tape.(Go figure right?)  
Duct tape comes in many colors, some of which are neon colors which glow bright in any light.  So we purchased a roll of neon green duct tape and used it to make the edges of the steps sharp to the eye.  The first time Liam noticed it he stared at it in bewilderment for a long time, squatting down to touch it several times before deciding to proceed through the door.  He had definitely noticed the tape, now all we had to do was coach him on how to step up and down the step like you would any normal toddler and hold his hand for assistance.  “Step” we instruct every time he comes near it and he will pause and look down at the line, edging closer to it, and then carefully lift his foot to maneuver up it or down it.  At first he would knock his toes into it gently feeling how high or low it went before moving down or up it. Then once he had memorized our steps he felt more confident in walking right over to it and stepping down it.  
The bright green line tells him a step is coming when he is walking forward and where to stop.  Now we don’t even have to warn him of the step because, as he approaches the line, he stops and looks for our hand to help steady him as he steps.  It has helped tremendously to use this method at our house (and Gigi’s) to teach Liam that a step is present and for him to proceed with caution.  Hopefully it will continue to protect him from his previous injuries he was getting from stumbling up our down the steps the old way.
If only all the steps everywhere could be lined and made this easy!  

Here are some pictures of our improved steps, and our Superman trying them out.

Tuesday, June 5, 2012

Answers for Our Unanswered Questions-Our Final Diagnosis

Over the past two months we have had two appointments with the Arkansas Children’s Hospital Genetics Department. Our first visit was to speak with a genetics counselor, Carla, and see a genetics specialist doctor to discuss all the possibilities of albinism there are for Liam (as well as to collect his blood sample, the second visit being where they collected blood from Brian and I as well.) We had originally been told that since he is so pale and white-headed that it was a possibility that he did not just have Ocular Albinism—where the lack of pigmentation is limited to just the eyes—but that he could have a full version of Albinism—several different types, see tab above—which would mean that it is not just in his eyes but instead in his eyes, skin and hair.

Though we were always told this could be a possibility, we were convinced that Liam’s was most likely inherited from me, his mother, rather than the possibility of it being from both Brian and I. (Ocular Albinism is typically x-linked and passed on by the mother. Since I had a non pigmented patch on my arm that could indicate a carrier of albinism, we assumed it would at least be from my side, if not from both mine and Brian’s.) We spent a lot of time talking to Carla about the genetics of albinism and how they are not as cut and dry as you might think.

Carla informed us that there was a possibility that neither Brian nor I carried the gene and that it is just a mutation in only Liam. It was also a possibility (though a very rare one) that I did not carry the albinism gene at all and that the spot on my arm was just a birthmark, with Brian being the only carrier. Then another possibility was that gene they tested for both Brian and I had one of us marked as the carrier and the other as not the carrier but still having a SEPARATE gene that was carrying the albinism just not the one that affected Liam’s gene with albinism. All a very confusing mess if you ask us!! I’m sure there are several other possibilities that I have overlooked but the main thing we wanted to know was not who it came from but what type it was—OCA1 or OCA2.

That being said, now that we know all of this information we have decided to keep it just between us and our families. We love Liam just the way he is and both agree that God gave Liam his albinism, not either of our family genes, because God is going to use him for great things WITH his disability—if you can even call it that.

So the only thing we are choosing to share for right now is that Liam’s albinism, which we thought originally was just in his eyes—ocular albinism—is not only in his eyes…Liam has now actually been diagnosed with OCA2, meaning that he has the full spectrum Albinism in his eyes, skin and hair. This changes nothing much for Liam other than we need to make sure he is always covered in sun screen when playing outside or that he remains in the shade when possible. Our chances with each of our following kids in the future will be 50/50, as well as Liam’s future children who will also have a 50/50 chance of carrying the gene or expressing it. Liam is labeled as a carrier of the gene (who usually do not express signs of the albinism) but since he shows signs of the albinism, Liam is what they call an expressing carrier—a carrier who also expresses symptoms of the trait. This is apparently very rare from what we hear but we are satisfied with the results nonetheless. Glad to finally be done with all the blood draws and such to pin it all down on paper.

It came as a shock to us but just in time for Liam’s one year birthday so we could officially close that chapter with a solid diagnosis and move forward into a new year…hopefully one empty of hospital visits, specialists, specialist testing, and especially…needles. Insert sigh of relief here!

Monday, June 4, 2012

Vision Therapy Update

Some updates on Liam’s therapy. He has continued to do therapy now once a month for only an hour. His vision therapist has been using the following techniques for his sessions and has informed us that she thinks Liam is doing just swell! He is currently staying right on track with his development in all areas and she said he has showed great improvement in his fine motor skills ever since he got his glasses. There are definitely still some issues with several of his “complete blind spots” but his tracking and pincer grasp has greatly improved. We are so pleased he did not have to move up to once a week sessions as of yet! Our therapist Lisa is also working on his sensory issues and has seen a lot of improvement. He is currently still not attending our church nursery but he is doing much better in crowded stores and environments than he ever has before! If you are following our blog and have been debating vision therapy or were advised that it does not show enough improvement for your doctors to recommend it, I strongly urge you to try it. I had my doubts when we started too but seeing Liam be able to place a peg into a small hole was warrant for a celebration in our book and definitely deemed the vision therapy thus far a small success! So if you want to try some at home first, here are the tools we have been using.

1.A peg board and brightly colored pegs—Object with this one is clear, putting the pegs in the holes and taking them out.

2. Small bright blocks in a cup—Try letting them fish them out one at a time without dumping the cup.

3. Toys with buttons on them—Try getting them to push the button using the one pointer finger

4. Connectable toys—These are those old school plastic toys in various colors that connect to each other to form a long line, use them to practice pulling at either end to get them apart and connecting the ends to hook them back together.

5. The light box –Still using this to really get small objects and see the dull ones.

6. A ball pit—To recreate this we use a small kiddie-pool and plastic balls (all found at Walmart) It helps for his sensory issues to get him to sit in the balls without any help and play while they all surround him touching him on every side.

7. A swing—We use this for sensory issues, spinning and swinging for a few minutes. Forcing his Nystagmus to speed up rapidly and then use compression pulses on his joints to slow it back down again.

8. High contrast books—Right now she is just getting him used to feeling and flipping the pages of the books. Point out eyes nose things like that and the main objects on the pages.

9. Light up stack rings—They have the light up ones at Target, the regular ones are in any toy store but the object is that they can manage to put the rings onto the stick sucessfully.

Again, these are just some of the newer things we are trying since I last posted on his vision therapy. We are still using a lot of the old tools and tricks seen HERE.

Friday, June 1, 2012

Vitamin D With No Sun

We recently had our one year check-up with our pediatrician to make sure Liam was growing and developing well—of course he is right up there in the 90th percentile for height, weight, and everything—but I had some questions for her about Liam getting the right amount of vitamin D. Kids usually get a reasonable amount of vitamin D from the sun, but in Liam’s case—and anyone else with Albinism—his sunscreen and lack of time in the sun does not allow this. I knew he was getting vitamin D from his formula but at the 12 month check-up we were advised to start him on regular milk and wean him off of formula. This left us wondering, do we need to supplement vitamin D for him or is there other ways or foods we can get it from to be a sufficient amount for his growing little body?

Our pediatrician informed us that there is a type of milk, whole milk, which has enough vitamin D already in it that we would not have to supplement as long as Liam would drink his milk daily. Since milk and juice are all he drinks right now, this shouldn’t be a problem, but, if when he gets older he does not like milk or refuses to drink it, we may need to revisit this issue.

Now, with Liam being in the 90th percentile for everything—everyone thinks he is a two year old because he is big—we did not want to do whole milk but instead chose to do Horizon 2% milk that already has vitamin A and D added to it. So, for now we are satisfied that as long as Liam is drinking his milk he is getting enough vitamin D….take that sunshine, we don’t need you!