Parent of a Child with Albinism

Early Intervention Services-4 months-present
Vision Specialist and Occupational Therapist come once a week for an hour, one on Tuesday, the other on Thursday.
Work on vision skills- tracking, following, depth perception
Work on motor skills, reaching, grasping, holding head up, rolling over
Work on using vision and motor skills together- opening mouth when spoon is coming.
Prebraille (kids with albinism might use braille, might read print, or both for a while)

Tests/Assessments used
-HELP (Hawaii Early Learning Profile)
-OREGON Skills Inventory
-Parent/team report

IFSP Outcomes for Vision (9/19/06)
-Fixate on a variety of toys and faces
-Localize sounds and voices
-Follow in all directions
-Track in all directions
-Gaze shift between two toys and faces
-Monitor light sensitivity
-Scanning her environment
Time frame for goals-6 months

IFSP Outcomes for Motor skills (9/19/06)
- Lyra will use her vision to purposefully grasp a toy
-Lyra will play with a toy using both hands at midline, medium size toy, bottle, object to mouth
-Lyra will hold an item in each hand and bring them together at midline, i.e. banging 2 toys together
-maintain grasp on item in each hand
-Lyra will remove 3 hand size objects from a container
-Lyra will put 3 hand size objects into a container (voluntary release)
-Lyra will maintain position on all 4’s for 1 min.
-Lyra will crawl forward on all 4’s five feet
-Lyra will sit up with minimal support
Time frame for goals-6 months

Today at Lyra’s OT session, we began updating her IFSP goals/outcomes for the next 6 months. These are what we want Lyra to be doing somewhere between now and when she is 16 months old. We really just got started with updating these today. We may add some goals in these areas and we still need to set some for cognitive skills and self-help skills. These are not necessarily in any order and we will check them off as she reaches the goals.

Motor Skills
-lower self from furniture
-cruising
-stand independently momentarily
-walks forward, 2 hands held
-walks, 1 hand held
-stand alone well
-walking 2-3 steps independently
-creeps upstairs
-roll ball back and forth
-pick up small object with neat pincer grasp
-isolate/point with index finger
-put objects into container (voluntary release)
-builds 2 cube tower

Social Skills
-waves/responds to bye bye
-babbles with inflection
-imitates familiar gesture

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

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

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

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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Lyra had her first Orientation and Mobility assessment on October 16th. She was 17 months old. I had been and still am doing a lot of research on Orientation and Mobility, and the benefits of the services to infants, toddlers, and preschoolers. Orientation and mobility(O&M) is 3 things: knowing where you are, knowing where you want to go, and knowing how to get there.

Do kids with albinism need these services? Maybe…maybe not. It depends on a lot of things. It can’t be determined based on visual acuity alone. It depends on how they are using the vision they have, how they are moving in their environment, and if they are doing this safely and independently. It’s important to know that many children with low vision will figure out how to move around safely and independently in familiar places like home or daycare, without difficulty. However, behavior in unfamiliar environments can be surprisingly unpredictable. Regardless of your child’s visual acuity, it is very important that your child receive a thorough assessment by a certified orientation and mobility specialist. If a child is moving around in his/her environment, whether that’s rolling, scooting, crawling, pulling up, or walking, he or she could potentially benefit from O&M services. (more…)

Lyra wears her glasses now all the time, rarely taking them off except for at night. This is wonderful, however now they are nearly too small for her. They are beginning to leave marks on her nose where they are too tight, and they barely reach over her ears. This STINKS! I can’t believe we are already going to have to spend another $200+ for a new pair of glasses. Eventually, thank goodness, she won’t be growing so fast and her glasses won’t need to be replaced as often.

At close distances, those less than 6 feet or so, she seems to be doing great. I don’t notice her putting books right up to her nose anymore. She does stand/sit fairly close to the TV, but then again, so do many fully sighted toddlers. I’m anxious to see how she’ll do this spring when she can play outside. How far away can she see a tree, or a car driving by, or a cow, or a flower, or all the other outside things that she hasn’t learned about?

Her next appointment with her pediatric ophthalmologist is in March. (YES! I finally learned how to spell that word correctly) Anyway, we’ll probably try to wait until then to get her new glasses, in case her prescription changes. Everything else looks good. I rarely see the nystagmus anymore and we have not seen her strabismus coming back.

It is much easier to tell you how Lyra is doing with her vision, fine motor, and gross motor skills by showing you. Here are 3 different videos demonstrating Lyra’s various abilities and quirks. You’ll see in the first video, based on the appearance of the floor, that there’s definitely a reason why the nursery workers at church have nicknamed her the Platinum Tornado.
Notice in the second video how inconsistent her O&M skills can be. She uses her vision and weaves through a room full of toys perfectly one time and then a minute later walk through the exact same path and fall all over the place. It’s hard not to laugh. She is too cute!

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‘Ehhhwhoa’ and ‘Buh-bah’= Hello and Goodbye

Lyra’s speech development is still delayed, and she has yet to begin receiving actual services from a speech therapist. This will begin next week. She was evaluated in October, but the evaluation was incomplete. In addition to that, staffing issues caused a delay in beginning services, so we had to get another evaluation completed by a different speech therapist. It has been frustrating to say the least. Hopefully everything will go as planned next week and Lyra can get started.
At this point, she’s just making gestures (thank goodness she learned a bit of ASL) and grunting. But she’s trying to speak- she’s using different inflections in her voice and chaining sounds together. She plays a game on the computer called ‘Giggle’ and when she wants to play it, she says “guh-guh”. ‘Hello’ in Lyra-speak is “ehhhwhoa”. Goodbye becomes “buh-bah”. She knows what ‘hot’ is, and to her it’s ‘haaht’. The word ‘yeah’ is a long drawn-out, whispery kind of “yeeaahhh”. It’s all about communicating, and Lyra is clearly displaying frustration in her ability to do that. Like any parent, I understand my child’s unique vocabulary better than anyone else, I just wish that Lyra could be understood by everyone else too.
You can view her Speech and Language Evaluation and IFSP by clicking the links below.

Lyra’s Speech Evaluation

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This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

Lyra has been been working on activities using a light box during her last few sessions with her TVI. Specifically she has been working on shapes and color sorting. Using the light box really motivates her to sustain her attention to an activity for a longer period of time. It makes the learning activity more fun and visually stimulating.

Illuminating the colors and shapes makes them easier to see. (more…)

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

We recently updated Lyra’s speech and language goals on her IFSP.  Her speech therapist has been coming weekly for the last 12 weeks.  She’s doing great and we’re considering changing her sessions to biweekly instead of weekly. She went above and beyond meeting her first set of goals, so I think we can set our expectations a little higher this time. 

These are her previous goals, which she has met:

• Will name body parts
• Will identify family members by name
• Will express greetings and affection with her family

These are her goals for the next 6 months:

• Lyra will demonstrate understanding of early descriptive words (e.g. sizes, colors) with 80% accy in a field of 3-4 choices
• Lyra will produce attribute+noun (e.g. big shoe, blue ball) phrases in therapy and by parental report.
• 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:  labeling

This past spring, our family attended an event at our local Children’s Center for the Visually Impaired called Literacy Lollapalooza.  This all day workshop type event included a variety of sessions designed to promote literacy in children with visual impairments.  One of the activities that was talked about in a couple of the sessions was making your own book, specifically making a book about something in your childs life, an “experience book.”  You could write a book about a visit to grandma’s or a trip to the zoo.  You could make a book about a daily routine like making dinner or bath time.  You can draw the pictures for your book, use real photographs or even cut pictures out of ads and magazines.  Let your child help as much as possible by drawing or pasting pictures, putting pages in order, even providing the words for the story by telling you what a picture is about. (more…)