The longer I am back the more I feel like life is finding it's new normal. I am thrilled to get back into the special needs interviews and focus on some of these specific needs. This week I'm going to focus on Albinism. My good friend Emmy is the mom that I interviewed! Please remember that we are not medical professionals. The women interviewed are simply moms sharing their experience with us. Always, always talk things over with a medical professional before making a decision!
Albinism is a term to used to describe a condition in which a persons body does not make the correct amount of melanin (which is what colors the skin). That's the most basic definition.
Special Needs Interview
Albinism
What country did you adopt from? China Waiting
Children
What was the age of your child at the time of
the adoption? She turned 27 months on Gotcha Day
What made you consider this special need? I was
born with a special need myself and when I learned of the possibility of
programs placing children with special needs I never looked back. Albinism in
particular wasn’t on my yes list but my maybe list and when I had the file of
our sweet little with albinism, I researched it extensively and learned that it
was actually a need that was quite easy!
What does daily life look like for you now? It’s
basically the same as it was before we brought her home just with more kiddos!
We’ve had a few more medical appointments in the beginning, but really in the
long run, it will only be two more a year than usual! Some extra sunblock,
sunhats and glasses! That’s it.
How has it impacted your life? Hugely of course
because we brought a new child into our home. We have been so blessed by the
gift of a third child and she is fitting in unbelievably! I would say in no way
has her need impacted our family. We couldn’t be happier with the results from
the doctors so far.
Are there variations of the condition and what
are you dealing with in your child? I am not a doctor, but have picked up on
lots of info to share.
Albinism has three major (minor in my opinion) areas of
concern…
1st: Vision is probably the most variable and
unknown ahead time. Within the vision part of this need, there are many factors
that can affect vision. I am not a doctor, so please do your own research as
medicine frequently changes and advances.
-Nystagmus
– This is where the eyes dart back and forth. Our daughter has this and it’s
pretty minor unless she is stressed and tired. I have seen some people with
albinism learn to control this on their own; there is also a surgery that can
help people with more severe cases of it.
-Astigmatism
– This is hard to explain, but has to do with where the eye takes the light
coming in and focuses it. Our daughters are severe and this will not usually go
away with age like it can for non-albinism people. It can be mostly corrected
with glasses.
-Strambismus
– Misplacement of eye (lazy eye) our daughter doesn’t have this, but it is my
understanding that there is treatment for this condition.
-Photophobia – Light
Sensitivity. Our daughter has this and
her is pretty severe. Sunglasses, Sunhats and low lighting help. This doesn’t
go away either and I believe all people with albinism suffer from some form of
this
-Low vision – While somewhat
correctable, glasses do not usually correct their vision enough to help them
see clear. Though I was recently told that their vision could improve over time
somewhat.
I know all of that sounded scary, but really she is just a
regular kid that is squinty in bright light that I have to remember to grab
sunglasses for when we go outside. We are in the process of getting her
prescription glasses filled and will get the double dipped transition lenses
and then we won’t even have to remember sunglasses! Without the glasses she
needs to get close to things to see them… other than that she is just like any
other child! I don’t even notice she’s different from my typical seeing kiddos.
I find that I parent her not much different than my seeing kids. She can still
read my facial expressions and hear tone in my voice…. Oh and her eyes are NOT
red. They are blue with a hint of violet in certain lighting. Dare I say she
has the eye color most people dream of having! Photographing her can be tough
because of squinting and flashes are a huge no-no for light sensitive kiddo’s!
2nd is skin
I read a
bunch on this and saw many differences in opinions on many different topics.
I’ve seen both parental differences and medical staff differences…. This is
what we do. Not saying it’s right for every person with this condition but
works for us. Sunblock is applied when
going outside. We do not avoid the outdoors during sunlight hours, but properly
equip her eyes and skin to do whatever it is we want to do. We do try to buy
clothing with sun protection (summer especially.) From what I can tell about
the cancer concern is they are more likely to get cancer if they get burned, so
be sure they don’t! Hats are important in the summer to protect their scalp…
and sunscreen even in the hair/scalp.. Apply often.. More than usual but don’t
go over the top and buy 90SPF.. Their fair skin can be sensitive and going
overboard with chemicals is not the answer. It’s proven that anything over
30SPF isn’t more effective than 30 and doesn’t last longer. All it does is put
more chemicals on their skin than needed IMO.
3rd is Syndromes… When I did the research for
Daisy I was told because of her heart condition, she was more likely to have a
syndrome than the average person with albinism. The major two syndromes
associated with albinism are rare! I’ll provide some links for researching more
on this need.
How does insurance coverage work for this
condition and the adoption? As long as you add them within the allotted time
(check with your state) I don’t believe it’s an issue. I would make sure your
medical insurance covers vision.. other than that, I can't think of anything.
What expenses should a family be aware of
upfront? Adoption costs and glasses. Also, sunblock can be very costly,
especially if you decide on using more natural sunblocks because of sensitive
skin.
What state are you in and does it offer
additional coverage to this particular special
need? I live in Minnesota, which is nice because the U of M has an albinism
clinic. Also there are support groups and IEP services for Low Vision in our
area. Plus a school for the blind about 30 minutes south of us if her vision
was worse.
What
else would you like others to know about this condition? This condition is life
long (meaning there is no cure) but it’s really the special need that other
parents of children with albinism consider the non special need need!
Here are some helpful links:
Links:
http://www.adoptspecialneeds.org/success-stories/kramer-kids-albanism/
(Interview of a family with LWB that adopted a child with albinism)
Waiting Kids with Albinism
email me at: hookedonfaith05@gmail.com for contacts for more information about these specific children
Felix DOB: 2009
Look at that grin!!!
Shane DOB: 2000
Reid DOB: 2001
Cory DOB: 2002
Jason DOB: 2002
(I couldn't resist the second picture of Jason!)
Andy DOB: 2003
Brent DOB: 2004
Timmy DOB: 2004
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