Parent of a Child with Albinism

Lyra is doing extremely well developmentally.  Right now, as far as her cognitive abilities and milestones, she seems to be at about the same level as her older brother and sister at that age.

Part of this, I’m sure is because of the extra attention she’s been given via early intervention services.  But I think another reason for her success is that we have never lowered our expectations of her just because she is visually impaired.  Sure I have worried in the past, that Lyra might not be able to do something, but that’s never stopped me from letting her try it anyway.  I don’t make excuses or use her visual impairment as a crutch and I won’t let her do it either.  That may seem harsh to some.

I’m not saying there haven’t been or never will be limitations to what she can achieve.  Sometimes we will just have to find new tools and creative techiques to enable her to overcome those challenges.  If there is something she truly CAN’T do, in time and on her own terms, she’ll figure it out.  But Lyra is far too willful to ever give up without a fight.

Don’t be afraid to expect the best from your child.  And don’t ever let anyone else tell you that you can’t or shouldn’t expect your child to be able to do something.  If they do, don’t be afraid to ask them WHY, make them back up their statement.  If they say,  “because  in the past every kid like yours couldn’t” or “this is the way it’s always been done”…I say, So What!  That’s not enough to convince me that my child won’t be able to achieve something.  You know your child better than anyone, so if you think your child CAN do something…go for it!

I’ll get off my soapbox now and end with one of my favorite quotes…and I have a lot of favorite quotes lately.

The pupil who is never required to do what he cannot do, never does what he can do. – John Stuart Mill

Lyra has been a busy girl.  These are current IFSP goals that she has met and a whole bunch of other milestones she’s met.   Mommy has been a busy mommy.   I have a ton of updates I need to write about and hopefully I’ll get those posts written over the next few days. 

IFSP GOALS MET- VISION AND COGNITIVE SKILLS

Will recognize when book is upside down and correct it
Will match object to picture
Will sort, match, identify colors (red, green, yellow, blue)
Will sort, match, identify colors and other concepts including size and shape
Will follow directions and identify objects using spatial concepts ( in front, behind, on top, under/over)
Will identify body parts and function of body parts both receptively and expressively

IFSP GOALS MET- GROSS AND FINE MOTOR
Kick and throw a ball towards a target
String 5 large beads

IFSP GOALS MET-SPEECH AND LANGUAGE
Lyra will demonstrate understanding of early descriptive words (e.g. sizes, colors) with 80% accy in a field of 3-4 choices
Lyra will follow 2-step commands in context with 80% accy.
Lyra will use personal pronouns (I, me, my) with 80% accy.
Lyra will produce 40-50 spontaneous 2-4 word phrases of various types in a 45 minute session.
Lyra will produce an age-appropriate array of communicative functions in her spontaneous utterances

____________________________________________

OTHER MILESTONES MET
demonstrates the use of familiar objects on request (hairbrush, crayon)
finds/touches big/little objects on request
identifies and matches shapes (circle, square, triangle, diamond, star, heart)
understands and gives “just one”
understands and gives “just two”
finds object when function is described (show me the one you brush your teeth with
touches smaller body parts (fingers, thumb, toes, belly button, elbow, and chin) on request
touches body part when function is described (show me what you hear with, see with, eat with)
tells age verbally
sorts 3 kinds of dissimilar objects
counts verbally 1-5
names 2-3 animals, 2-3 items of clothing
tells own current activity (“eat cookie”, “go potty”)
combines two words to express possession (“daddy car”)
asks questions beginning with “what”, “where”, or “when”
uses “is” in statements (“this is a ball”)
occasionally uses articles “the” and  “a”
plays with 2-3 peers with adult supervision
pets and interacts with 2-3 different animals
shows awareness of routine by preparing for next activity without reminder (goes to table at lunch)
spontaneously joins in when familiar song or rhyme is heard
attempts to help adult with more complicated tasks (holds dustpan, wipes table)
enjoys hearing familiar stories repeated; tries to participate in story telling
greets familiar people without reminder
says please and thank you without reminder
interested in T.V.
stacks 8-9 small cubes
imitates adult making vertical and horizontal lines with a pencil/crayon
imitates circle with pencil or crayon
matches colors (red, yellow, blue, black, white)
participates in messy activities (fingerpaint, sand)
independently explores familiar rooms in own home
knows the arrangement of furniture, doors, stairs within own home
uses straw to sip liquid
holds spoon with adult grasp
pierces food with fork and brings to mouth
pulls pants up and down with assistance
zips engaged zipper on coat or sleeper
indicates wet or soiled pants
flushes toilet with reminder
washes hands with soap and water (needs assistance)
dries hands with towel
brushes teeth (with assistance)
puts together 3-part nesting toy
rolls, pats, pounds, pinches clay ball
turns knobs on toys, T.V., stereo
holds pencil with thumb and fingers in adult grasp
walks up stairs independently
jumps in place with both feet
pushes chair or stool to counter and climbs up
somersaults forward
stands up one foot momentarily

Most parents know how hard it can be to get your child to “perform” on command, but I decided to give it a shot. Here is Lyra showing off some of the words she’s learned over the last couple of months.   She has been receiving regular speech therapy for the last month.  Lyra even mentions her speech therapists name, Scott, in the video…hmmmmm…  I swear it was just a coincidence. 

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.

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.

We’ve had some surprising new developments on the stairs this week. Notice how she looks down AND feels the edge with her foot. She’s a very quick learner. We’re so proud of her.

In the span of one day, without any coaching or prompting, Lyra has figured out how to:

1. Take her pants off…followed by her diaper(before today, had only taken her diaper off).

2. Take everything out of a laundry basket, flip it over, and then climb on top of it and stand up….and then fall off.

3. Climb out of her pack-n-play bed (first ever attempt)

…but she still can’t point at anything.

This is one of the few fine motor skills Lyra has not been able to master. She is supposed to be able to point at pictures in a book, and point to something she wants, and point to her body parts upon request. I’ve been really creative in my ideas to try and get her to point or poke at things. We read “The Grouchy Ladybug” and tried to get her to poke her finger in the holes. I bought one of those old fashion toy telephones that you have to actually put your finger in to “dial” the numbers. I even dropped cheerios inside of a “pop bead” so she’d stick her finger in it to get it out. Nothing has worked. She doesn’t point at things, she just pats. I haven’t been this frustrated and stressed out about a milestone since the fisher price star stackers. I thought she would never be able to put the star stacker rings on the stand. It seemed like it took forever.

As far as pointing to things she needs…well that is NOT a need as far as SHE is concerned. Lyra has figured out all sorts of ways to get what she wants, or in some cases, what she DEMANDS. She grunts or screams when she wants us to give her something. Then she shakes her head “no” while we play a guessing game trying to find out what she wants. Other times she just takes the “I’ll do it myself” approach. If she can’t reach a toy in her toy box, she’ll just climb in or if we won’t lift her up over the gate into the kitchen, she’ll just bust THROUGH the gate. When we used to have a gate at the bottom of our stairs, and Lyra learned how to just open the gate.

Maybe we just need better gates.

Obviously her gross motor skills are not a problem. She’s a pretty smart little turkey. I just don’t understand, considering her creativity and all of the things she’s managed to figure out, why she can’t just POINT her finger. I don’t even care if she points AT anything. I’d be happy if she just held one finger up in the air. She just needs to get that one finger isolated…preferably her index finger…not her middle finger.

Maybe I’ll just teach her to pick her nose…kind of hard to do that without isolating one finger…Ha Ha

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Lyra has learned how to safely go down the stairs. We had to teach her to do this through a lot of repetition. Some friends of ours had taught their two daughters to go down stairs like this, so we had to give it a try.

Please excuse the TERRIBLE audio on this video. You may want to just turn the sound off.

Milestones-
Focuses on faces- 4 months
Laughs out loud- 3 months
Rolls front to back- 3 months Rolls
back to front- 6 months
Sits unsupported- 7 months
Says “Da Da”- 7 months
Says “Ma Ma”- 8 months
Crawls- army crawl- 1/7/07
First teeth- 1/7/07- two lower central incisors came in together (this was a big day)
Claps hands- Feb 4th, 2007
Pulls up to standing position- Feb 11th
Goes from sitting to crawling and back to sitting without help- Feb 13th
Crawls-on hands and knees- 10 months
Cruises-side to side only, along sofa or coffee table- 10 1/2 months
Stands alone- 3/25/07 (maybe 3 seconds-tops)
Waves Bye-Bye- 10 months (waves to herself)
Finds hidden objects/toys- 10-11 months
Discovers her voice-9-11 months (“sings” along with music and screams for fun)
Takes first steps w/o hanging on to anything— 5/1/07- 1 or 2 steps, 5/7/07- 4 steps

How does a baby know to open her mouth for a spoonful of food? They see the spoon coming.
In Lyra’s case, at 4 months, she couldn’t see the spoon coming. This made feeding her more difficult. We tried different sound cues to get her to open up. One that was more successful was tapping the spoon on the bowl just before bringing it to her mouth. It didn’t consistently work though and eventually gave up on the sound cue. Maybe not the best decision on our part as parents. We decided to wait a bit longer for solid foods. Now Lyra can see the spoon coming and opens her mouth. She sometimes tries to grab the spoon. A lot of babies do this, but in Lyra’s case I think it also has to do with her visual ability, specifically her depth perception. She isn’t sure how far away the spoon is and wants to guide it to her mouth using her hand.

The strabismus surgery she is having in a couple of weeks could improve her depth perception. We’ll see if it helps with feeding.

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What Can Lyra See?
A lot…but just not as clearly as everyone else. Her vision now is about 20/200, which is legally blind, but this doesn’t mean she lives in a world of darkness. My vision without my glasses or contacts is 20/200. Very early on, we knew she could see something…we just weren’t sure what. She would look at toys, books, or objects that had very high contrast. We have a dark navy blue border along the top edge of the white walls in our bedroom. We would take Lyra in there, and she would look up at it and laugh hysterically. Of course so would we, it was so cute. This was as early as one or two months.
As her vision progressed, we could judge how well she could see based on how far away she could track or follow a lighted or unlighted object. Her field of vision is expanding more and more every day, but more slowly than a baby without a visual impairment.
Lyra’s vision is also affected by the nystagmus and strabismus. They affect her ability to focus on detail as well as her depth perception.
Because of the photophobia, it is also harder for Lyra to see things in rooms with very bright light or outside on a sunny day. Its like coming out of a movie theater into the bright sun. The glare can be almost painful. She see better in dim light. The bright light is very irritating on her eyes. Just the other day, we spent several hours at a mall. The mall had typical bright florescent lighting. Lyra would not leave her hat on no matter how many times I put it back on her head. By the time we left the mall, her eyes were red and watering.

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work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.