Parent of a Child with Albinism

Lyra has been receiving Early Intervention(EI) services since she was about 5 months old. The level of services and method of services vary from child to child and state to state. These services are provided under the federal law IDEA (Individuals with Disabilities Education ACT). I have come across parents that have never heard of EI services or others that are receiving inadequate services. Children with albinism are AUTOMATICALLY eligible for services based on medical diagnosis. All children should have the option to receive these services. Unfortunately, even with the federal law, some kids don’t get the opportunity. Sometimes its hard for parents to find out who handles the services for a particular state. Here is a website with lots of information about Early Intervention and contact names and numbers for EVERY STATE.

National Early Childhood Technical Assistance Center

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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 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

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.

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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On Saturday March 31st, my husband Troy and I participated in a training session through the Children’s Center for the Visually Impaired called O&M(orientation and mobility) Patrol. The goals were to get an idea of what its like to live with low vision and to gain a better understanding of various ways to improve orientation and mobility for our daughter. There were a total of 48 parents and grandparents of children with visual impairments. First, we listened to/watched a presentation covering the basics of orientation and mobility. Orientation is knowing where you are in space and where you want to go and mobility is being able to carry out a plan to get there. We learned a lot of great techniques, activities, and tools to help at all the various ages and stages of our child’s development. We even got to look at and play with a few “mobility tools” like a white cane and this electronic sensor thingy that vibrated in your hand when you walked too close to an obstacle. Honestly, before this training, the idea of Lyra ever using a white cane to get around gave me a huge lump in my stomach. It’s not such a scary thought anymore.
After our classroom instruction it was on to the field training. We were all grouped into pairs and then assigned a coach. Troy and I were together. Each group was given a pair of simulator goggles that simulated as closely as possible, the vision of their child. Our goggles simulated 20/400 vision. They also gave us money…$3.25…wooohoooo! I wore the goggles first. All 48+ of us had the same assignment. We had to walk out of the building to the bus stop on the corner, take the city bus to Crown Center Plaza (DON’T FORGET TO ASK FOR A TRANSFER), walk around the shopping center and buy something for less than $2.00. Then we switched, and Troy basically did the same thing and then took the bus back.
At first, wearing the goggles was a little nauseating. Even just walking was weird feeling. One difference that I noticed right away was my depth perception. Its hard to sit down on a bench when you aren’t exactly sure how far away it is or knowing where to put your foot to step onto an escalator. I couldn’t read street signs from the bus and when we went into a coffee shop to buy something I couldn’t read the menu. Thank goodness I had my “sighted guide” Troy there to help me order my coffee. I also frequently found myself putting my face really close to things. I doubt someone would want to buy any of the bagels after watching me with my nose an inch away from them trying to see what kind they were. That kind of made me sad…worrying about what onlookers might think of my child. Overall, my vision wasn’t THAT bad, which was comforting. I would have liked to take the goggles home to wear longer and see what it would be like to do all the stuff I normally do with low vision.
This program was a wonderful learning experience. We each received our own little award certificate in recognition of completing the O&M training. We were also sent home with a huge packet of information and resources for orientation and mobility. And even though it only lasted a short time, I was very grateful that I had the opportunity to take a look at the world through my daughter’s eyes…kind of.

Here are some articles/links for more information:

• Orientation and Mobility Training: The Way to Gohttp://www.tsbvi.edu/Outreach/seehear/fall98/waytogo.htm
• The Roots Of Orientation And Mobility: Birth to Three Years http://www.tsbvi.edu/Education/roots-0to3.htm
• Orientation and Mobility: Preschool Style http://www.tsbvi.edu/Education/preschool-om.htm
• Almost 100 Motor Activities for Infants and Toddlers http://www.tsbvi.edu/Outreach/seehear/summer01/motor.htm
• Orientation And Mobility (O&M): The Early Years Of Infancy Through Preschool http://www.tsbvi.edu/Education/early-years.htm

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4-3-07

Today Lyra and Miss Kim, her “teacher of the visually impaired” worked on putting on and taking off stars on her star stacker toy. She is pretty good with the taking off, but not so coordinated when it comes to putting them back on.

We also read some books, encouraging tactile exploration. She did some good looking at the pictures, but she seems to be much more interested in turning the pages and eating the book. Kim suggests we try to get her to explore the various textures of touch & feel books. We need to get some more touch & feel books or just make our own.

One of our favorite activities with Miss Kim is playing with our box of stuff. Its just a small orange box that we filled with various toys/objects. We work on taking out and putting in, identifying or finding objects by name(”Where’s the duck?”), uses of some of the objects(hairbrush, telephone), and anything else we think of. We keep the same things in the box all the time.Here is what we have in it: ball, book, duck, egg shaker, baby, two green blocks, sunglasses, hairbrush, telephone, shoe, and a binky.I think that’s all. I think she is saying “duck” when she pulls that out, but its definitely debatable.

Today Lyra was able to follow a ball across the room

and retrieve it twice. Yay!!!!!

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