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…)

I post a lot of videos of Lyra. I do this not just to entertain, but also to support my overall purpose of starting this site. I’m not sure if they really HELP other parents of children with albinism.  I hope that for NEW parents of a child with albinism, watching these videos gives them comfort.  I want encourage them and show them that everything is going to be okay.  By seeing how happy, and NORMAL, and silly, and beautiful Lyra is, maybe they will worry a little less, smile a little more and have hope for their child’s future.

Plus…I’m her Mommy…and I HAVE TO show her off. 

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…)

My husband is currently in the process of transferring this site from one hosting provider to another.   During that process, the site may occasionally be down completely or you may find links not working, pictures missing, and other wacky looking things. Hopefully everything will be looking and functioning properly within a few days.

Thanks. 

Over the last couple of weeks I’ve been borrowing a friend’s Sony Digital SLR camera.  It’s AMAZING how easy it is to take good pictures when you have a good camera.  It’s been so much fun!  I’ve been taking pictures like crazy.   Lyra really knows how to ham it up for the camera.

Lyra had an appointment with her pediatric ophthalmologist this month, a check-up that was originally scheduled for the end of September. Several weeks ago, we lost one of the lenses from Lyra’s glasses. After over a week of searching, I gave up. We knew we had to get her a new pair. I didn’t want to buy her a new pair of glasses right then, knowing there was a chance that her prescription might change in September.  So, I called Lyra’s PO to see if they could get her in sooner. Luckily, they were able to schedule her an appointment later the next week. In the mean time, they said it was okay for Lyra to wear her old glasses…just until the appointment.
The day before Lyra’s appointment…the missing lens to her other glasses magically appeared. There it was, just sitting on the end table in the living room. I don’t know how it got there. We asked Rebekah and Dominick and neither of them knew how it got there. I suspect Lyra may have found it on the floor somewhere and just picked it up and put it on the table, but as much as I GRILLED her…she just wouldn’t confess…lol.   Maybe it was the dog.

Lyra’s check-up went really well. They dilated her eyes and all that fun stuff. Her refractive error didn’t change, so her prescription remained the same. So much for my reasoning for Lyra needing a sooner appointment. Dr. Grin did note that Lyra was focusing on objects/noisy toys at a further distance. She was looking at and paying attention to the wiggling barking stuffed dog on the shelf across the room. …well okay then.
Regarding Lyra’s nystagmus, Dr. Grin said that when she is focusing on something close up, her nystagmus REALLY slows down. Since the appointment, I’ve been paying attention to that more, and I agree. I’ve even noticed that for very brief moments when she’s focusing on something, her nystagmus stops completely.  Her next appointment will be in 6 months.

Dr. Grin did not, nor does she ever give us any type of visual acuity numbers for Lyra. I’m okay with that. She said she’s seen children have a visual acuity of 20/200 and then at an appointment 6 months later that same child see at 20/80. Those numbers fluctuate and they are not a definitive or complete indication of what Lyra sees.  However…just for the sake of numbers, we do now have a number.  Last month at the NOAH conference, we had the opportunity to get those visual acuity numbers. Doctors from the University of Minnesota were seeking volunteers to participate in a research study. It consisted of some basic information forms and a questionnaire and also included a vision test. They used a preferential looking test, specifically Teller cards, and based on that test, at that time Lyra’s acuity was 20/130. Those numbers mean more to other people than the do to me really. When people ask us, “So what IS Lyra’s vision like?”…that number is really what they’re asking for. So now I have a number I can give them…instead of just a range. I know her acuity may be better or worse than that on any given day depending on the environment and situation, but knowing whether its 20/100 or 20/360 doesn’t make any difference or serve any purpose. For those people who ask and just HAVE TO know… 20/130 is what I’m goin’ with.

Just over the last month I’ve actually had a more than a few opportunities to respond to those people, asking how well Lyra sees. After talking to those people and just thinking about comments people have made in the past, I’ve come to a conclusion… I think Lyra’s glasses are misleading. I think a lot of people assume that with her glasses on, she has 20/20 vision. When I’ve told people that Lyra’s vision is 20/130 WITH her glasses ON, many of them are shocked. These are people who have known Lyra since birth. A common response is, “Really! I had no idea her vision was that bad.” People knew Lyra had vision problems but apparently thought her glasses “fixed” all of those problems. It just really makes me wonder now, how many other people in Lyra’s life think this.

I can understand how easy it would be to think Lyra sees better than she does. She does function very well and puts on quite an act, fooling people into thinking she has perfect vision. I admit, sometimes she has me fooled, forgetting that she has any visual impairment. Then one day, Lyra walks up to a pile of laundry sitting on the couch and says, “Hi Daddy!”…and I’m reminded, oh yeah, she can’t see perfectly. Fortunately those sad moments are rare. Honestly, MOST moments are happy moments, when the focus is on silly, beautiful, sweet Lyra…and not on her visual impairment.

The new book, “Raising a Child with Albinism: A Guide to the Early Years” is now available for purchase.  It is published by the National Organization for Albinism and Hypopigmentation (NOAH) and is the first of its kind.  This book will be an invaluable resource for new parents of a child with albinism.  It truly is a great book.  I’ve already bought 6 copies. I am also one of the 20 contributing writers and one of the 8 contributing photographers.    You’ll find pics of my Lyra on pages 41 and 88.

Here is the book description from the NOAH website:

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

I have updated the link in the sidebar, “How Lyra Sees” with the new longer version of the presentation.
Dr. Brian Evan’s updated presentation includes more than double the number of slides as the previous one.  This has always been very helpful to share with friends and family members to explain to them how albinism affects Lyra’s vision.

How We See

The Toy Industry Foundation, in partnership with Alliance for Technology Access (ATA) and American Foundation for the Blind (AFB) have released an updated toy guide for children with special needs.   Here is the link:

Let’s Play: A Guide to Toys for Children with Special Needs

A couple of weeks ago, our family attended the 2008 NOAH National Conference in Las Vegas.  I was getting ready to write this post and I was having trouble remembering everything I learned at the conference.  We had a great time and I learned a lot and met a lot of people, but honestly, it’s kind of like this picture above…a big blurrrrr… (more…)