GOALS FOR VISION AND COGNITIVE SKILLS
Will recognize when book is upside down and correct it
Will match object to picture
Will sort, match, identify colors (red, green, yellow, blue)
Will identify parts of book (cover, pages, text, pictures, top, bottom)
Will sort, match, identify colors and other concepts including size and shape
Will follow directions and identify objects using spatial concepts (above, below, in front, behind, on top, under/over)
Will identify body parts and ‘function’ of body parts both receptively and expressively
Will recognize and identify common environmental sounds (at home, outside, at church) and their direction (in front, behind, left, right, above)

Strategies/activities to work toward this outcome:
ITS will provide play ideas/techniques to encourage Lyra to use her vision during play and everyday activities
ITS and family will practice these strategies during play and everyday routines
ITS will recommend various types of toys or materials that will encourage skill acquisition
ITS and family will remind Lyra to look at what she is doing. Use phrases like ‘watch your work Lyra’, “Use your eyes to help you ____” (find the toy, match the shape, make it work, etc)

Assessments used: HELP, parent/team report, Oregon Skills Inventory

GOALS FOR GROSS AND FINE MOTOR
Imitate intersecting lines during drawing activities
Kick and throw a ball towards a target
Catch a big ball
Snip paper independently
String 5 large beads
Manipulate fasteners and a variety of mechanical closures

Strategies/activities to work toward this outcome:
ITS team will provide play ideas/techniques to assist Lyra in advancing her fine and gross motor skills
ITS and family will practice these strategies during play and everyday routines
ITS team will work with family to make any adaptations, if needed, in order for Lyra to be able to complete tasks.

Assessments used: HELP, parent report

©2008 Parent of a Child with Albinism. All Rights Reserved.

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

©2008 Parent of a Child with Albinism. All Rights Reserved.

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

©2008 Parent of a Child with Albinism. All Rights Reserved.

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.

Most of the activities and the information your parent educator would be giving you, would be very similar to what you get from your child’s Family Service Coordinator, TVI, OT, Speech Therapist, etc.  If your child already receive services from these types service providers, the LAST thing you want is ANOTHER provider to try and schedule home visits with.   So, what can Parents as Teachers give you and your family that you don’t already have?

Peer to peer interaction.

Many PAT programs offer weekly play groups for the children enrolled in the program.  This is the MAIN reason I signed up.  These play groups will give Lyra the opportunity to interact with children her age in our local school district.  She will get to meet and play with children who will eventually become her classmates in school.  The other children will be able to get to know Lyra and learn about albinism BEFORE she enters school.   Lyra’s parent educator told us that they plan to offer the weekly play groups beginning in October.  I can’t wait!

There are more than 3000 Parents as Teachers program sites across the country and around the world.  To find one in your area, visit the link below, and then click on, “Find a Program by State.”

Parents as Teachers

©2008 Parent of a Child with Albinism. All Rights Reserved.

Thanks. 

©2008 Parent of a Child with Albinism. All Rights Reserved.

©2008 Parent of a Child with Albinism. All Rights Reserved.

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.

©2008 Parent of a Child with Albinism. All Rights Reserved.

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.

The book we made with Lyra is called Lyra Plays Outside.  It’s about all the things she has to do before she gets to go outside and play, like putting on sunscreen and her hat. :)  Lyra LOVES her new book!  She asks to read it a million times a day and she is already beginning to memorize it.  Sometimes she can predict what the next page is going to say and says it out loud before I have a chance to read it. We made 2 versions, one on blue card stock and one on yellow card stock.  We weren’t sure which one she would prefer as far as contrast and glare.

To see what her storybook was about, click below to watch the “movie” inspired by the book.  LOL

Lyra Plays Outside

©2008 Parent of a Child with Albinism. All Rights Reserved.

• NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.
• International Albinism Center
• Albinism International- An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.
• Albinism Fellowship UK- An organization that aims to provide information, advice, and support for people with albinism and their families.
• SARA Foundation (Supporting Albinism Research and Awareness)- A site created to help parents who have children who are diagnosed with albinism.
• Positive Exposure- Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.
• The Hermansky-Pudlak Syndrome Network Inc.- The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

• American Nystagmus Network- A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.
• Vision for Tomorrow Foundation
• Hadley School for the Blind- Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.
• The Low Vision Gateway- A comprehensive list of low vision resources from around the world.
• Vision of Children- Information about current medical research, outreach, and education.
• NAPVI (National Association for Parents of the Visually Impaired)- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

• Alana’s Albinism Site
• Amber’s page
• Emerson Porter
• William’s Site
• Joseph Andrew
• Skate Angel
• Life in Noodletown
• Ramblings of Casey
• Inconsistent Ramblings

Websites/Blogs of adults with albinism

• Heather Kirkwood’s Blog
• Bianca Knowlton’s Site
• Nicole’s Site
• Annette’s Blog

Commercial Websites

• Solar Eclipse- Sun protective clothing
• UV Sungear- Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.
• Baby Ride- Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.
• Sun Togs- Sun protective clothing for all ages and cool kids sunglasses.
• North Solar Screen- Various types of window tinting and window shades.
• Llumar Window Film and Window Tint- Professional glass film/tinting for home or auto.
• Industrial Shadeports- Custom build shade structures.
• Protect-a-Bub- Sun protective clothing and accessories.
• One Step Ahead- They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

• SENSwitcher- Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.
• Seedlings- A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.
• Library Reproduction Service- Large print books for children and adults and Large Print reproductions of educational materials for special needs students.
• Perky Duck - A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.

Articles

• Socialization and the Child with Low Vision
• The Role and Function of the Teacher of Students with Visual Impairments
  
  This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

©2008 Parent of a Child with Albinism. All Rights Reserved.

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:

©2008 Parent of a Child with Albinism. All Rights Reserved.

Lyra- July 2008

Lyra- July 2008

Dominick- July 2008

©2008 Parent of a Child with Albinism. All Rights Reserved.

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

©2008 Parent of a Child with Albinism. All Rights Reserved.

How We See

©2008 Parent of a Child with Albinism. All Rights Reserved.

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

©2008 Parent of a Child with Albinism. All Rights Reserved.

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…

We arrived in Las Vegas the afternoon of Thursday, July 10th.   As we were checking-in and just looking around taking it all in,  Lyra kept going up to other little kids with albinism saying “Hi Lyra…Hi Lyra…”   It was cute and sad at he same time.  :)   It was fun seeing all the moms I’d talked to and gotten to know on the NOAH forum and seeing all the kids and babies I’d seen so many pictures of.   I even got to see some of the kids who’s photos had been in the slide shows I’d made.

Friday was the first day of sessions.  I had volunteered to help with Sun Gear Swap that morning answering questions and taking/organizing clothing and sunglasses that people were donating.   This gave me another opportunity to meet and get to know some people, including Susan DuBois, editor of the new book Raising a Child with Albinism: A Guide to the Early Years.  This book is AWESOME and I think EVERY parent of a child with albinism should have it!  I believe it will be available to purchase from the NOAH website in the near future.

Sessions we attended that day included Genetics of Albinism, Albinism Research, Computer Tips and Tricks for People with Albinism, Parents: Taking Care of Yourself and a Parent Discussion group.  If you asked me what I learned that day, I’d be at a loss for words.  There was just SOOOO MUCH information to take in that to pinpoint one specific thing I learned would be difficult.  All that information is stuffed somewhere in my brain though…ready for me to pull it out when I need it. 

Most of that day and most of the conference really, I hung out with my good friend Jill, who has an 18 month-old son Andrew who has albinism.   Friday evening our families went out to dinner together.   It was a lot of fun and the whole night went pretty well overall…until the end.   To make a long story short, Lyra puked up her meal all over the dinner table, we didn’t have a change of clothes, then later back at the hotel, Troy also threw-up.   We’re still not 100% sure what caused it, but we think it may have been food poisoning.   They both started running a fever and Troy had a headache for pretty much the rest of the conference.  Dominick and I never got sick.   Because they were sick, Troy couldn’t go to any sessions on Saturday and Lyra could not go to the daycare.  I did manage to attend 3 sessions that day.  I had volunteered to moderate the first session I went to that day, Positive Exposure presented by Rick Guidotti.   To say that was COOLl would be an extreme understatement.  Rick is an amazing person and has done and continues to do incredible things for the albinism community.   The other 2 sessions I attended Saturday were What Parents Need to Know About IDEA, and Adjusting to Low Vision and Looking Different.

By Sunday morning, Troy and Lyra were feeling better.  We all got to attend the breakfast and closing session, during which they announced that the 2010 NOAH Conference location would be Washington DC.  I’ve never been there…I can’t wait!

By far, the best and most memorable thing I got out of the conference was just seeing, meeting, and talking to other parents of children with albinism and adults with albinism.   To be able to see and and be around so many people who you can really connect with…people who understand everything you’ve been through and are dealing with…is just indescribable.   It was amazing and wonderful.  I got to know and share stories with SO many parents.  It’s as though we’re all kind of like a big family.   One experience I had that was really special to me was when I saw this group of  girls with albinism.  They were SOO Beautiful!!!  It just made me feel better…for Lyra.  They were pretty and happy and just full of life.  They weren’t weird looking or awkward or self-conscience AT ALL.  As a parent, you just think about things…and how life will be for your child as a young adult.  I needed to see these girls.  They made me more hopeful, and made me smile. 

Meeting Rick Guidotti was just like WOW!  He even found time to snap a few pictures of Lyra during the conference.  I can’t wait to see them! I also had the chance to meet many of the adults with with albinism who I’d got to know through chatting and email over the last couple of years.  It was good to hear their perspectives on some of the issues associated with albinism and just to hear their life stories.  A few other parents and I even got invited to a breakfast Saturday morning to meet the NOAH Board of Directors.  They are a great group of people and I’m so grateful I had that opportunity to get to know them.

I can’t wait to do this all again in 2 years at the next NOAH conference.

The picture at the beginning of this post was taken during the NOAH group picture on the last day of the conference.  Even though it’s difficult to make out any faces, it shows you just how many people with albinism attended the conference.  In case you’re curious…Lyra is sitting on the lap of the woman wearing a bright turquoise shirt, sitting right in the middle of the group.

Here are some more pictures from the conference.

Here is a short video of the Sunday morning breakfast crowd and the slide show and 2010 conference location announcement.
Be prepared to puke if wobbly camera scenes make you nauseas.   I was moving the camera all over the place at first.  I’m sure it will be terrible for those of you who have albinism to watch with all the quick movement.  I apologize for my awful camera skils. 

Oh…but you have to wait until this song is finished.

©2008 Parent of a Child with Albinism. All Rights Reserved.