Parent of a Child with Albinism

These are some of the milestones Lyra met over this past year. They are not in any particular order. There have been so many! I don’t want to forget them. These are all I could remember. I’ll add more as I think of them.

pulls string to move toy along

open cabinets and drawers

kick a ball

throw a ball

climb a ladder

slide down a slide

push self forwards and backwards on riding toy

walk forwards, backwards, and sideways

run

walk up and down stairs with hand or rail

scribble in circular motion and side to side motion

beginning to hold crayon/marker correctly

build a tower of 6 blocks

feeds self with spoon

drink from regular cup without spilling

isolate index finger to point and poke

invert container to obtain small object

remove clothing including hat, pants, diaper, shoes, and socks

master 8 piece shape puzzle

gives kisses and hugs

pretend play with dishes, baby dolls

imitate facial expressions without a sound cue

points to body parts when asked “Where is your”

find named people/pets within 3-5 feet when asked “Where is”

follow 1 step directions

occasionally follow 2 step directions

sings along with songs

occasionally puts 2 words together

identify self in mirror -

identifies family members in photos

Uses 15-20 words spontaneously

names 2-3 pictures

My Favorite- In order to avoid taking a nap, Lyra will throw every binky, blanket, and pillow out of her crib, remove the sheet from her mattress, and then scream “MAMAAA”, OR she will just take off all of her clothes and then pee or poop all over her bedding, and then scream “MAMAAA.” It’s just soooo much fun and she knows mommy will come to her rescue. I’ve solved the diaper issue… she now takes naps with her diaper duct taped on.

I finally purchased some of the shampoo I had heard about to deal with Lyra’s “dingy“ hair. It’s called Shimmer Lights, and you can buy it from a beauty supply store, Sally Beauty Supply in my case. On the back of the bottle, it says the product “Brightens white and gray hair, Shampoos away yellow, and Tones down brassiness.”

It really did work quite well on Lyra’s hair. Her hair looks a lot brighter and whiter and clean and shiny. It’s pollution free, at least for now.

One thing you definitely need to do the first time you use it, is dilute it a little. As you can see in the picture below, this shampoo comes out of the bottle in very DARK purple color. If you’re not careful, your child could end up with purple hair. I had to rinse Lyra’s hair multiple times to get all the purple out. For now, I am just going to use it on her hair once a week. We’ll see if that works to maintain things.

Because of privacy issues, I have removed some of the document links in the Early Intervention section. If you would like to take a look at any of these files, please send me an email and I may be able to send them to you via email.

Let me know if you have any questions.

Mashawna

I just want to take a moment to say Thank You, to everyone who has ever left comments for me, either on my Guestbook or after individual posts. I can’t tell you how very very much I appreciate the those comments. Your comments have all been incredibly encouraging. It really motivates me to know that this site I created is serving the purpose for which it was intended…to help other parents.
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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.