Parent of a Child with Albinism

Lyra’s early intervention team recently completed her yearly re-evaluation. Lyra is 2 years and 4 months old.  Her goals are updated at least once every 6 months.  (more…)

As I may have mentioned before, over the last 2 years, writing has sort of become my therapy.

I recently had my 4th article published in Albinism Insight.  The article is about emergent literacy in children with low vision.  The information can really be applied to ALL children with low vision, not just those with albinism.  Some of the information from my previous post, “Literacy Lollapalooza” is included in the article.  You can view my article by clicking on the following link.

literacy-all-pgs

Recently, our family has been reconnected with the Parents as Teachers program.  We first participated in the program 5 years ago in a different school district, with Dominick.

Parents as Teachers (PAT) is an early childhood parent and family support program serving families throughout pregnancy until their child enters kindergarten, usually age 5.  Here are the goals of the program from the PAT website:

Program Goals
* Increase parent knowledge of early childhood development and improve parenting practices
* Provide early detection of developmental delays and health issues
* Prevent child abuse and neglect
* Increase children’s school readiness and school success

This FREE early childhood program is for ALL children, not just children who have a delay in their development. Parents are supported by PAT-certified parent educators who provide home visits every 6-8 weeks. At each visit, in addition to offering developmental screenings, a parent educator will bring activities to do with your child to help enhance his/her language development, intellectual growth, social development and motor skills. (more…)

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…)

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

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

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…)

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.

‘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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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. (more…)

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…)