Why Albinism?

My last post was about how Jackson said he knew that Emily would be the awesome, funny, clever, happy little girl who is now part of our family.  We should have trusted him and not worried.  But, we did worry. 

 

We worried before we said “yes” to her file and we worried after we said yes.  We worried how another child would disrupt our status quo and whether she would adapt to our lives and family style.  We worried about albinism and what it might really mean as a special need on a daily basis.  Thankfully, those worries were all for naught.  Emily has adapted wonderfully – a testament to her spirit and fortitude – and other than us having to get used to naps and diapers again, her transition into our family has been pretty much seamless and albinism has not seemed like a “special need” at all.  It seems strange to me now that we didn’t initially have Albinism as a listed “need” on our medical checklist.  [When you adopt through the Special Needs program, agencies have you complete a checklist of medical/special needs that you will consider accepting in children who might be referred to you for adoption.]  There is no reason why Albinism wasn’t on our original list other than this:  I hadn’t ever even thought about it.   I didn’t know much about albinism, hadn’t read the blogs of any families with children with albinism, and just had honestly never given it a second thought.  It wasn’t something we discussed and were nervous about or opposed to considering.  It was just something we had never thought about at all. 

During the three years leading up to our decision to submit an application and begin the process of adoption, the “system” seemed to work relatively smoothly and many families were pretty quickly (after paperwork) referred children (primarily girls – as boys tend to wait MUCH longer to be adopted) with very minor or correctible special needs.  By the time our dossier went to China in late summer 2013, the system and process had changed a good bit.  The monthly shared lists were trending toward being very small and "minor needs" children were seemingly fewer and farther between for referrals.  Families’ wait times were lengthening and some larger agencies were telling people to expect 1-2 years for a referral of a young girl with minor, correctible needs.  Very different than during the prior years.  We were approved for a child up to age 5 with certain special needs that we felt we had researched well.  Our dossier was logged in September 2013 and, when the October list came out, we got a call.  No real wait at all.  The trouble was that maybe we were not as prepared as we thought three years of research had made us.  We consulted two doctors and received two very negative reports.  One doctor was convinced that the child had a fairly significant syndrome and that scared us.  We turned down that referral and I cried.  I’ve posted – briefly – about this before.  The same thing happened for us at the end of January 2014.  Then, we received a file at the beginning of February and we said yes.  We submitted LOI (Letter of Intent) and received our LOA (final approval) very quickly.  Then, we received an update that was entirely different than what had been in the child’s original file – and which was pretty dismal.  All measurements and numbers were different – for every month recorded – and the “milestones” and development information was all different.  It was as if the update was for a different child altogether - except that it wasn't.  We asked for another update and were given the same information again.  We asked why things were suddenly totally different and we were told that the original file was all wrong.  We were confused and upset and didn’t feel that we could take a leap of faith based upon information we could not trust.  We had to send the LOA back saying we could not accept that child.   It was an awful, awful experience and we began to seriously question whether we were following the path we were supposed to and whether we really were supposed to adopt. 

 A few weeks later, as I’ve talked about in a prior post, our agency rep called to tell me that she had a very strong feeling that she had seen our daughter, but that she wanted to know if we would consider a child with albinism if the child appeared.  (Our agency rep did a great job of watching for any new additions to the shared list – even on non “release” nights).   We went into research mode and read everything we could read in the span of about 48 hours.  It just happened that in one of the Facebook groups of which I’m a member, a mom had just done a “tutorial” of sorts on her adoption of a child with albinism.  I wrote to her.  I then joined an albinism prospective parents group and asked more questions.  Time and time again, the “word” was that albinism is – on a daily basis – pretty much a non-“need.”  Similarly, the moms told me over and over about all the things their children COULD do vs. what they couldn’t do.  They told me that their children do just about everything that any other child would do.  But, we still waffled on whether we would look at the file if the child our agency rep had referenced “popped” up on the list that week.   When we talked about why we were waffling, it wasn’t about albinism really.  It was because we did NOT want to say no to another child – ever.  When a friend asked me whether I would look at the file if we had not already said no to the other children, I said yes – we definitely would.   Saying that out loud convinced me that being afraid to say no was not a good reason to pass up a chance to see a file that might be our daughter’s.  And, as it turned out, that file did “pop up” on the day our agency rep thought it would.  We opened it, and there was Emily – big and smiling and healthy.  The response from the doctor we consulted was three words in all caps: “GO GET HER.” 

 In case any other family is trying whether albinism is something you can handle (and I realize that saying “handle” makes this more clinical sounding than it is when we are talking about real children and real lives and needs for families – but I also know that families want to be practical about the needs they feel capable of dealing with depending upon their family circumstances), I wanted to talk about (and caveat this to having only been a mom of a child with albinism for 5+ months and that everyone's experience is different and that one should always be prepared for the worst-case scenario) what albinism looks like in our family so far.  And, so far, it has really been a non-issue.

DAILY LIFE:  Emily gets up, looks to see who is coming into her room, says “Hi Mom or Hello Dad” to whichever one of us it is, and then she comes to us.  She goes downstairs by holding the rail and walking down.  She tries to climb up into her highchair.  She asks for whatever food she SEES on our plates.  She feeds herself with a spoon or fork.  She helps us get her diaper changed and clothes on (she knows how to put on her own pants and socks – and she’s only 23 months old!).  She plays.  She brushes her hair (or tangles it).  She waves “bye bye” to her brothers as they go off to school.  She plays with toys in her car seat.  She walks down the hallway to her preschool class and helps me point out the noses on the animals (Noah’s Ark) painted on the walls.  She sees other children’s clothes and notices if they have “dots” (polka-dots).  She joins her toddler class in whatever they are doing.  She plays in the play kitchen, colors and paints, plays with toys, “reads” books, goes on the playground, and hangs her coat on her special hook.  She comes home and plays more: with musical toys, blocks, beads (loves beads), books, stuffed animals, trains, etc… She can stack blocks, drop checkers into the “Connect Four” slots, take her brothers’ small Legos apart, stack rings on a peg, do age-appropriate puzzles, look at the animals in the touch and feel books, dance, kick balls, push trains, etc… She can look at some of the pictures we have in frames around the house and recognize who is pictured there.  She noticed a train picture on her brother’s bedroom wall the other day and pointed and said, “choo choo.”  She sees and names objects in books.  She loves ride-on toys, push toys, and balls.  She can kick balls and throw them.  She plays with playdough.  She climbs ladders and goes down slides.  She pets our dog and cat.  She goes up and down stairs.  She closes doors and turns on/off lights.  She opens cabinets and sees crackers and yells “Caw-ker!”  She sees cans of nuts and says “nuts!”  She sees her juice cup and says “joo cup!”  She calls for her brothers and recognizes who they are.  She can point to people's eyes, nose, mouth, ears, hair, etc... when asked.  She doesn’t run into things or stumble around.  She has an EXCELLENT memory for where things are in our house – even at her young age.  She sees things, but she also uses her memory to tell her where certain things are and where she can find them again.  If you came to our house and did not know she had a vision issue, you would not think that her vision was any different than anyone else’s.  The same would be true at her preschool. 

“NEEDS” on a daily basis:  Minimal.  We put sunscreen on her (stick works well) and we have sunglasses for her in our cars.  (She usually asks for her “gas” when we get in the car).  She doesn’t love hats, but we try.  She wears normal clothes (not covered-up always) and goes swimming and plays outside.  We try – with all of our kids – not to be out in the brightest sun for hours on end.   But, we haven’t altered much since she has joined our family.  She comes to her brothers’ soccer games.  She goes to the pool.  She goes to the zoo.  She plays in the yard.  We just are more diligent (which is a great thing for all of us) about sunscreen.

 EYESIGHT:  We don’t yet know what Emily’s acuity is.  She is too young to do eye charts or to answer questions about vision at the ophthalmologist.  She's also pretty squirmy for eye exams.  We took her to an eye doctor in August and I didn’t love him (posted about that too) because I felt like he pitied us and that is ridiculous!  She has glasses as a result of that appointment, but she takes them off a good bit.  We saw a new pediatric ophthalmologist yesterday and I liked him a lot.  He said that he thinks her prescription (for the glasses) is correct, but that she may just not need the glasses for distance vision now like she will as she gets older (for reading and other detail).  We are to come back in a year.  He thinks one exam each year should be sufficient.  He confirmed some things that I already knew: (1) The eye differences that albinism causes are not correctible with glasses, but other issues that could exist in kids with albinism (or any other kids/adults for that matter: near/far sightedness, refractive error, astigmatism, etc…) can be; (2) her need for sunscreen is probably a bigger “need” for her than are the glasses on a daily basis right now; (3) most kids with albinism go to regular school and do regular things – including regular sports and activities; (4) most kids with albinism don’t need Braille (although some moms in the Albinism groups say that it can be helpful to learn); and (5) some people with albinism do drive (depending upon their visual acuity and requirements in the state in which they would attempt to obtain a license.  Emily’s glasses darken in bright light or when she is outside, but she prefers sunglasses to the prescription glasses when outside.  She has mild nystagmus – which is (in lay terms) movement of the eyes from side to side.  Most people don’t notice it unless I point it out when she is looking at certain things further away.  Nystagmus can be – in some children – surgically corrected.   It is worse for some people with albinism than for others.   In some children, it can improve with age.  In others, it is most evident when the eyes are tired or stressed.  While Emily is doing great and has been assessed by groups/professionals as on target developmentally, we know that as she gets older and starts to need to look at smaller print and finer detail for reading and writing, that she will need some school-related accommodations.  We’ve worked hard during the past 5-6 months to get her into the best position to receive that help.  We’ve had her assessed by the county/state early intervention program.  She does not qualify for services at this time because she does not have delays in other areas, but her diagnosis (albinism/visual impairment) alone gets her into the system to be ready to have an IEP (individual education plan) at age 3 when she would be eligible for public preschool.  We go for one hour a month to meet with a vision teacher at the Center for the Visually Impaired in Atlanta.  This group is terrific and will help us to monitor her progress and needs and will even help us with the IEP’s and other school-related issues down the road.   Emily sees us, sees objects, sees pictures, etc…  She finds and picks up small items.  She plays with and uses toys just like any other child her age.  The only thing I notice about her vision is that I’m not sure that she sees steps down or changes in depth going down very well.  She still runs full steam ahead, but she will sometimes stumble if there is a change in depth of the ground or a step that is the same color as the ground and she is not familiar with the setting.  For example, when she first went over to my parents’ house, she fell down their one step (all hard wood of the same color) that goes from the dining room down into their den.  She didn’t see the depth change for the one step down.  Now that she is used to going to their house, she knows the drop-off is there and she remembers to go down that step (even without us telling her to do that).  She also pays little to no attention to our TV (my one child for whom I can honestly tell the pediatrician she has no “screen time” at all. J).  We assume this is because the TV is mounted higher on the wall and is probably out of the range at which she could see it well from her level or from the sofa.  Occasionally, she will come close to the TV (see picture) and point to something.  Otherwise, she doesn’t even look up.  She does look at things on the Ipad though.  At other houses where the TVs are on lower stands, she will sometimes stand very close and watch for a few minutes.  I assume that’s probably what she did in China since one of her reports said that she watched TV sometimes.

 SKIN:  Her skin is sensitive to the sun and needs at least an SPF 30 sunscreen applied every 2 hours when in the sun.  People with albinism are at higher risk for non-melanoma skin cancers. Some kids with albinism have skin that is sensitive to things other thing sunlight too.  For example, bug bites may bother them more than they do other children.  Or, they may be more bothered by new clothes that haven’t yet been washed or they may be more prone to eczema or skin irritations.  So far, Emily’s skin does fine with us just putting a good, creamy lotion on her at bedtime.  We will see a dermatologist for her about once a year.

 FUTURE:  I know that we’ll have more to deal with when she gets older and needs us to advocate for and to help her with school, but we hope that by getting on top of the issues now and having professionals help us monitor her vision and progress, that we’ll be ready to do that.  We are biased for sure, but we know that Emily is smart and we do not want her to fall behind or be held back from anything simply because she cannot see quite as well as can her peers.  Our plan is that she will attend a “regular” preschool where a vision specialist is on staff or where we have one come to work with her as needed.  Our hope is also that she will then attend a “regular” elementary school (and beyond).  We hope that if she gets used to using vision aids and accommodations from an early age, that she’ll be ready to read and write when the time comes.  Although neither the ophthalmologist nor the Center for the Visually Impaired says that many of their patients/clients with albinism use Braille or canes, many parents of children with albinism advocate for their children to learn Braille or to have cane training.  Those parents say that while their children can read larger print/font books/words/documents/computer screens, that knowing Braille may help them in later years (high school/college) when they have more voluminous reading assignments and their eyes may tire faster.  Some also say that cane-training can help their children adapt to situations where they may face different terrain or be somewhere where they aren’t familiar with the layout, depth of stairs, or changes in the ground.  In the albinism parents groups that we have joined,  there are constantly reports and pictures of people’s children (with albinism) at dance recitals, playing their school band, playing soccer, playing volleyball, riding bikes, swimming, doing gymnastics, and doing all other regular kid stuff.  We have those same hopes for Emily.

PUBLIC PERCEPTION:  As we’ve been out and about with Emily this summer and fall, I’ve noticed that most people haven’t ever seen anyone with albinism.  They don’t immediately recognize that Emily has albinism.  I think that is because of some of the misperceptions/misconceptions about what people with albinism actually look like.  Most have blue or gray eyes.  Some with more pigment in their skin may have darker blonde or reddish hair and green or hazel eyes.   The red or pink eyes that people expect are not present except in some flash photographs where the light of the flash reflects off of the back of their eyes and shows up as red or pink in the pictures.   Just as they don’t immediately recognize that Emily has albinism, people also don’t recognize that she has any sort of visual impairment.  Her preschool teachers tell me that if I hadn’t told them of any vision issues, they would not have known that any exist.  (This will likely change as she gets older and needs to look at books and other documents from a much more close range than that at which a toddler looks at toys or coloring pages).  Most people say her hair color is beautiful (and there certainly are a lot of people in our country who pay a lot to have white/blonde hair).  It's pretty common for American toddlers to have light hair like hers.  This won't be as common as she gets older.  There may be people who ask about her white skin and hair and there may be people who have ugly things to say.   My thought on that - for now - is that that is generally true about anything.  Kids and other people can be mean.  But, most people have something that could be a subject of ridicule (even if it shouldn't be) and/or about which they feel self-conscious (weight, acne, height, scars, athletic ability, etc...)  Our job, as Emily's family, is to encourage her, to help build healthy self-esteem and confidence, and to remind her that she was/is fearfully and wonderfully made by God.

If anyone who reads this is wondering about albinism as a “special need,” I’d be very happy to talk about our experience.  For us, so far, it has really been a non-“need” with the exception of some evaluations and appointments to get various doctors and other services in place for down the road.   What Emily needed most was a chance to be in a family and to be loved and to receive the accommodations she needs to shine. 

HELPFUL LINKS/INFORMATION:

The NOAH (The National Organization for Albinism and Hypopigmentation) website is a great resource for learning more about albinism.  www.albinism.org

NOAH also produced a terrific parent webinar video (link below) about how and what people with albinism really see.  After watching this, I felt so much better about what Emily sees and what she can do.   If you are considering albinism as a special need, I HIGHLY recommend watching this webinar. “How We See” https://www.youtube.com/watch?v=uJ6EX4uphUg

It was also helpful to us to read the “frequently asked questions” and common myths/facts about albinism (from the NOAH webpage) - http://www.albinism.org/faq/children.html  

I also found the FAQ’s about albinism (http://www.visionfortomorrow.org/albinism-faqs/) to be very helpful to us and I copied them for Emily’s teachers and for some of our family members to read as well.

 

So – here are some pictures from the past month or so to show what albinism looks like for Emily (reading, playing, walking, on playgrounds, drawing, etc...)