Parent of a Child with Albinism

This is a new post, but old information. Originally I had posted a complete copy of Lyra’s original IFSP. However, because of privacy concerns, I removed that link. From this point on, rather than posting the complete file, I will just copy and paste the relevant information from the IFSPs. I will be updating a few other similar posts over the next few weeks.

Lyra’s first IFSP -September 2007
Age- 4 1/2 months
Time frame for goals- 6 months

Service Providers:
Teacher of the Visually Impaired (TVI)- 1 visit/week
Occupational Therapist- 1 visit every other week

Goals for Vision Skills
Fixate on a variety of toys and faces
Localize sounds and voices
Follow in all directions
Track in all directions- including computer games
Gaze shift between two toys and faces
Monitor light sensitivity- explore NOIR sunglasses
Scanning her environment- Will visually explore her mid to distant environment and move to an isolated target up to (1) ft away

Goals for Fine Motor Skills
User her vision to purposefully grasp a toy
Play with a toy using both hands at midline (med size toy, bottle, or object)
Hold an item in each hand and bring them together at midline, i.e. banging 2 toys together
Remove 3 hand size objects from a container
Put 3 hand size objects into a container (voluntary release)

Goals for Gross Motor Skills
Maintain position on all 4’s for 1 minute
Crawl forward on all 4’s 5 feet
Sit up with minimal supports

Goals for Social Skills
Waves/responds to bye bye- wave or say “bye-bye”
Babbles with inflection
Imitates familiar gesture

Goals for Self-Help
Drink independently from a sippy cup
Finger feed herself
Eat with utensils

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.

We just completed Lyra’s annual IFSP review. We added goals/objectives for the next 6 months. She will be having a speech evaluation and an O&M evaluation in the coming weeks. We will add goals/objectives in those areas once the evaluations are complete. She is scheduled for Oct. 16th to update her Functional Vision Assessment.

Lyra’s updated IFSP

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.

Lyra’s Functional Vision Assessment -completed August 2006 when Lyra was 3 months old.

Here is Lyra’s IFSP. She was 4 months old when it was written. We are just beginning her annual review to update all of her goals. I hope this is helpful to other parents.

Lyra’s IFSP

Lyra’s “Present Level of Development” -This is actually included with Lyra’s IFSP. It was written before the actual IFSP to basically get a baseline of Lyra’s abilities.