Mashawna Thompson, Author at Parent of a Child with Albinism

Learning from Bekah

I am just like Rebekah and Rebekah is just like me. She teaches me. I see her…and then I can acknowledge and understand things about myself.
I hope she learns as much from me.
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I wish I had the motivation and thought I have at 3AM…at 3PM instead.

Sun Protective Clothing

This pink outfit in the first picture and the brown pants in the second picture are made of Solarweave fabric. It provides an SPF 30+ and is very loose and breathable, and just really convenient. It ended up being a lot less expensive than the one-piece sun-protective outfit she has, that is made out of the same type of material. You can see that out-fit in my last post here: Laugh it Off.

We purchased one yard each of the fabric in pink, tan/brown, and white for a total $30. My mom, who is an awesome seamstress, was able to make Lyra a shirt with a hood and a pair of pants out of the pink, 2 pairs of pants out of the brown, and 2 shirts out of the white, one with a hood and one without. That ONE one-piece sun protective outfit retails for $40. Obviously, if you know someone who can sew, buying the fabric by the yard and making the outfits, is a much better deal.
Lyra wears these A LOT. It’s much easier to throw these on her to go run errands than to slather on half a bottle of sunscreen. For now, as you can see in the picture below the pants are long enough that they even cover her feet. 🙂 I know it kind of looks like she has some GINORMOUS long legs, but really my mom just made them a little extra long so Lyra wouldn’t grow out of them as fast. I told my mom she should start her own line of inexpensive sun protective clothing, but so far she doesn’t seem too interested. Here is the website where we purchased the fabric: Sungrubbies. They have the fabric in pink, blue, tan, black, and white. If having outfits made isn’t an option, you can find several websites/retailers of sun-protective clothing in the Resources section. They can provide just as much sun protection and can be a handy alternative to sunscreen, AND, you don’t have to reapply these every 2 hrs.

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Laugh It Off

Sometimes the only way for me to deal with things or to get through a situation is to add a little humor. And thats OK… You need too be able to laugh it off once in a while. It’s kind of therapeutic for me and sometimes keeps me from bursting into tears. For example, when Lyra got her outfit made out of UV protective material for her birthday, I said “Look, she got a HAZMAT suit” or when I say she is like a pinball when she walks around bumping into things. However I would have very likely become defensive if someone else would have made those comments first. Of course she is still a baby and I will be careful not to say things like this when she is old enough to understand. You can see a pic of the outfit below.
Other times, laughing it off means I need to make a sarcastic comment in response to someones question thus preventing me from blowing up or smacking them. Generally the questions and comments are sincere, but occasionally there are the questions that are just plain stupid. For example, on Sunday afternoon we were at a restaurant and I had Lyra in the bathroom washing her hands. A young adult came up to us, with eyes WIDE OPEN, and asked, “Is that her REAL hair color?” I replied with something I read on the NOAH forum and said… “No, we hold her up by her ankles and dunk her in bleach once a week.” Then I walked out of the bathroom. Seriously, why would her hair NOT be her natural hair color.
Other times I just get bored with answering the same old question the same old way. I posted a question on the NOAH forum looking for some variety in how to respond to “Where did she get all that white hair?” Here are some of the suggestions I got from various NOAH members:

It is all in the genes!
From God.
I drank alot of milk when I was pregnant.
The supermarket–aisle #6, Loreal color #35, $10.00 and you too can have the same color!
It was “special order.”
From Santa Clause.
From the mailman.

Some of those aren’t really untrue, just a little more interesting. Others are obviously just a bunch of baloney. I’m not condoning lying. Sometimes I just gotta make it through the day.

Here is a link to a section on another parents website called “Dumb Things People Say.” It really cheered me up when I first read it when Lyra was only a couple of months old.
Dumb Things People Say

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Toy Information Links

Toy Ideas for visually impaired infants, toddlers, and preschoolers. -from Texas School for the Blind and Visually Impaired.

Toys, Glorious Toys! -by Jean Robinson, Family Support Specialist, Texas School for the Blind and Visually Impaired.

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Welcome to Holland

I found this beautiful story from a link on another parent’s website. Thank you Cassandra. It’s another way of looking at or describing what it’s like for parents who have a child who is different in some way. To me, it is also a reminder that you never know what God has planned for you.

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WELCOME TO HOLLAND

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley.
All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Lyra the Pinball!

Lyra is walking pretty much all the time. I rarely see her crawl anymore. This is AWESOME…except that she is like a pinball when she walks. I keep the toys, books, blankets and sippy cups picked up as much as possible, but Lyra drags everything out all over the place. Then she walks around the room tripping on this, bumping into that, and sideswiping everything else. I know toddlers fall a lot when learning to walk, but I think its more than just being a toddler. The only identifiable issue that we can try to correct, is that Lyra doesn’t look down, as she walks across a room. She just PLOWS right on through. Her TVI says this (not looking down) is fairly typical of kids with visual impairments. Also contributing to her frequent bumps and bruises is her poor depth perception. She’ll misjudge how close she is to the wall or climbing gym and clip the side of her head on it.
We are working with her and trying to use some sound cues to get her to stop and look down. And lots of kisses for the bumps and bruises. She will be having an evaluation with an Orientation and Mobility specialist in a month or two. This is a standard evaluation done once a child starts walking. The O&M specialist will be able to help us recognize/identify which trips and falls are a result of her low vision and which are just typical toddler falls.

She’s been doing so good… I had started to forget she had any visual impairment for a while.

It just makes me sad…

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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.

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Cheap, Old Fashion, and Homemade

Sometimes the best toys are not the most expensive or the fanciest. Often the simplest toys or non-toys provide the most enjoyment.

The first picture, a Fisher Price toy phone, is good for pretend play and fine motor development. Pointing is a fine motor skill and the little holes for dialing are the perfect size for little pointer fingers. We cut off the string that connected the receiver to the base to make it more user friendly. It was too short. You couldn’t hold the receiver up to your ear without lifting the base up off the floor.

In the second picture are just “pop beads.” These are good for just building overall hand strength and also hand-eye coordination. They were a little too difficult to pull apart, even for me, so I took a metal file tool and filed down the sides of the tip a little. Now they fit in the holes more easily and Lyra can actually pull them apart.

In the third picture is our modified shape sorter. There were too many shapes. First we put duct tape over all of the openings except the circle. Once she could successfully put the circle block in the hole, we uncovered the square opening too. Once she can do both of those, we’ll uncover another. We also taped the lid down to prevent her from just taking the it off to put the shapes in.

This goofy looking thing in the last picture is a cottage cheese container. We cut little slits in the top and pulled a piece of ribbon up through each of them. We tied knots on the other ends of the ribbons so she couldn’t pull them all the way out. The purpose of this homemade “toy” is to practice a pincer grasp. The pincer grasp is a very visual fine motor skill and often tough to master for kids with visual impairments. We were looking for various ways for Lyra to practice this, other than the typical, picking up cheerios. Her TVI gave us the idea for this.

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Lyra… “Cover Girl”

My baby girl is on the cover of a magazine!!! I wrote an article for the latest issue of Albinism Insight, a quarterly magazine published by NOAH. I had included some pictures to go with the article, but her picture being on the cover was a complete surprise. We were all very excited when we saw it. The article is basically a condensed version of the “history” section of this site. I couldn’t come up with a title myself. The magazine editor, Kelsey Thompson, titled it, “Life with Lyra: A new mom reflects on her first year as the parent of a child with albinism.” I was very pleased with how it turned out, expecially since I’m not much of a writer. I barely passed most of my english classes in high school and college. 😛
The entire issue was wonderful and had a lot of really great articles.

We are all just so proud of Lyra!