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Not Really a Special Need: Adopting a Child with Albinism

September 26, 2016 by nohandsbutours 0 Comments

No Hands But Ours is focusing on skin conditions this month. My son has albinism, but I hesitated to write our story. Heck, our dermatologist has discharged us. If my son ever has a suspicious mole or a serious burn, we’ll go back. Otherwise, I am capable of – the dermatologist pointed out – totally handling this skin condition on my own. It’s not that I have special training. For the most part, my son’s skin condition requires… nothing. Or at least nothing much different than what I already do with my four biological, fair-skinned children.

What does that entail on a daily basis?

Most mornings, I check the UV index online. There are UV monitors and even bracelets and sunscreen bottles that will change color and alert you to UV rays – but the online weather report serves just fine for us. If the UV index is below 3, then I do not think about my son’s skin for the rest of the day. Since we live quite far north, there are several months of the year when the UV index never goes above 2. If the UV index is 3 or above, then I make sure there is a bottle of sunscreen with me. If we are going to be outside for more than 10 minutes, I apply sunscreen approximately 15 minutes before we walk out the door. I only apply sunscreen on parts of my son’s body that will be exposed to sunlight – in other words, parts not covered by clothing – and I don’t apply it at all if we are mostly going to be in the car or running errands in and out of shops. When we’re outdoors, I reapply sunscreen every 90 minutes.

That’s it.

Admittedly, we’re not a big beach, sailing, Disney, etc. family. Plenty of people with albinism (PWAs) live or vacation in sunnier climates more than we do, however, without any problem. It’s simply a matter of being vigilant. UV-protective clothing and beach tents also help.

Right now, my son cannot be responsible for his own skin care, so we apply the sunscreen for him. At school, his teachers ensure that he has sunscreen as per his IEP. Happily, my son has not yet had a burn. Many PWAs have a story of a rebellious phase when they stopped being careful about sunscreen – and of one painful burn that convinced them that their parents knew best. One burn is not a disaster.

No matter what the UV index is, my son wears sunglasses and a hat with a large brim if we go out. The hat is good to protect his scalp, but mostly it is to protect his eyes. Photophobia (extreme light sensitivity) almost always accompanies albinism, and our son is no exception. We have prescription sunglasses, and also prescription indoor glasses with a 20% tint. My son is four years old and doesn’t have a lot of “self-care” skills. He learned very quickly, however, to find and put on his hat and glasses when the light is bothering him. In my humble opinion, little kids are always super cute in eyeglasses!


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This month’s focus is on skin conditions, but I would be remiss if I didn’t mention that all people with albinism also have some degree of visual impairment. (I wasn’t fully aware of that when we checked “albinism” on our agency’s SN checklist, so maybe you didn’t know either!) In a nutshell: vision issues result from a lack of pigment in the retina and abnormal development of the optic nerve.

Nearly all PWAs also have nystagmus (involuntary eye movements). The degree of visual impairment varies greatly from one person to another. Our son’s visual impairment has been more of an issue than the skin condition, but that isn’t saying much.

So far, my son’s VI doesn’t really affect us on a day-to-day basis at all. Once or twice a month a wonderful teacher for the visually impaired (TVI) visits my son at home or at school. She has good tips but, honestly, it’s mostly common sense. My son is more likely to scribble (it’s “pre-literacy mark making”, people!) if he is offered chunky markers than if he’s given pencils that make faint lines. As we are teaching our son to feed himself, it’s better to spread the Cheerios on a dark-colored napkin than to camouflage them on a cheery yellow plate. When we choose board books, we look for ones with simple, uncluttered pictures. Our son is far from learning to read, but if and when he gets there (God willing), he will need enlarged type and probably a slant board and/or magnifier.

Since my son is nonverbal right now, it’s hard to determine exactly how much he can see. He is probably legally blind. That doesn’t stop him. He walks, runs and climbs as well as any four year old. Even in new surroundings, he rarely trips or bumps into anything. We think he has sonar! Chances are that he will never be able to get a driver’s license. The issue seems abstract now, but I can imagine that it is hard for a teen with albinism to watch his friends go through that rite of passage without him. Even before that stage, though, my son might be one of the kids who are embarrassed by his Elsa-white hair and insist on dying it.

As with any visible difference, there is the risk of teasing or outright bullying. On that front, our family’s experience has been relatively easy so far. People in our child’s province ranged from curious to cautious about albinism (no, it is not contagious!), but no one was unkind to us.

Now that we’re home, we’re living in a very diverse community, and people rarely even notice our son’s unique coloring. We have had some ignorant comments and questions. (Yes, his hair color is natural. No, I shouldn’t insist that he take off his sunglasses indoors. Yes, he is really Chinese!) Happily, they all seem to go right over my son’s head. Adult PWA have told me that even in the U.S. it can be hard to grow up looking different, and our family talks often about how beautiful albinism is. Most people seem to agree!


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Adult PWA and other parents have been amazingly willing to share their stories and advice. Most have emphasized to me that albinism is not a handicap that will limit my son’s life in any significant way. Professional baseball might not be an attainable goal, given his VI and depth-perception issues, but albinism will not stop him from being a doctor, lawyer, marathon runner…

Please know that if you are considering adopting a child with albinism, you have a whole community of people who are ready to support and reassure you. Some resources are below.

Several types of albinism exist, including one that involves a rare bleeding disorder (Hermansky Pudlak Syndrome). Thankfully, my son has not had any unusual bruising or bleeding, and we have not done genetic testing to determine the exact type of albinism he has.

My son has white hair, white skin and blue eyes. (No, people with albinism do not have red eyes, although they may seem red in certain lighting because you can perceive the blood vessels.) It is fairly certain that he has OCA1. OCA stands for oculocutaneous albinism, meaning both my son’s eyes (that’s the « O ») and skin (the « C ») lack pigment. Children with other forms of albinism may have reddish or light brown hair, and may have some skin pigment. There are also forms of albinism that affects only the person’s eyes (OA), although that is unlikely to be diagnosed in a waiting child.

When we were reviewing our son’s adoption file, I brought it to our much-trusted pediatrician. Albinism is fairly rare – approximately one in 18,000 people in the U.S. are born with this inherited, genetic condition – but our pediatrician actually had some experience with it. He shrugged. This is not a Special Need, he told me. It’s a Social Need. Our son’s real needs, as our pediatrician wisely predicted, are all adoption-related and, sadly, go much deeper than his skin.

Resources

NOAH (the National Organization for Albinism and Hypopigmentation) has a wealth of information for parents, as well as conference calls (including some aimed specifically at adoptive parents) and an annual conference.

Albinism Community is a large Facebook group for people with albinism and their families.

Albinism Adoptive Families is a Facebook group for families who have adopted, or are in process to adopt, a child with albinism.

For families considering this special need: the Prospective Albinism Adoptive Families Facebook group is a great place to start.

“What Can I See” on YouTube is a wonderful video for understanding the VI aspect of albinism.

Love Without Boundaries also has a super video, which I watched a ridiculous number of times when I was waiting for our son.

– guest post by Jennifer

Making the Grade: High Fives and Fist Bumps Instead of Hugs, Please

September 25, 2016 by nohandsbutours 0 Comments

I still remember her. She was the best. My 1st grade self loved her big smile and her early 80s old-lady perm. Everyday, she’d stand by the classroom door at the end of the day and hug each and every one of us. I was excited to go to school everyday because of her and her Mr. Rogers-ish ways. It’s a parents’ dream — a kid who loves school and has a teacher who showers their son or daughter with affection.

Except when it’s not exactly a dream.

Touch is a powerful thing. It can hurt tragically, and it can heal supernaturally. It makes neurons fire in our brain like the fourth of July. Touch is a remarkable God-given tool to build relationship and connection from the neighborly casual to the most intimate. And, it’s something our children who have had hard starts often have a hard time with.

Some kids can’t get enough of it; some kids struggle to accept and receive it at all. And when they struggle with touch, we as parents struggle along with them.

When our kids are small, we can hold them, literally “wear” them, cosleep, guard those moments when we feel trust and connection can build. But, those small kids grow bigger and our strategies to help them give and receive appropriate physical touch have to grow with them.

A few weeks into the school year, what do you do when you realize your child has the warmest, sweetest preschool teacher in the world or the veteran 1st-grade teacher who has a poster above her desk that says FREE HUGS HERE? You thank God that your child got that teacher and that you know he or she is being taught by someone who cares about their heart and not just their brain.

And, then, you might want to think about writing an email with a gentle request. Touch is important in the classroom; research and personal experience tell us so. But, high fives and fist bumps can do the trick and allow you to save those hugs and kisses for home.


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Want a little jump start on that email? Here are two examples to get you started. The first is for the teacher of a child who goes after hugs and kisses from everybody; the second is for the teacher of a child who has a hard time giving and receiving affection. Copy and paste, switching out names and pronouns as appropriate. Or, simply let them be a starting point to create an email all your own. I’d love to read your final product, if you do. Send it to me; maybe yours will become the template for another family.

Regarding a Child Who Gives Indiscriminate Affection

Dear Teacher,

We so appreciate you. You know how to successfully teach a child to do something he or she has not yet done before –which would be magic in and of itself. But, somehow, you manage to not only teach a child but teach him or her in a room full of children. Each one of those children learns in his or her own unique way. And, each child comes from a different place and brings his or her own unique needs into your classroom everyday. What you are able to do by teaching each child individually and the entire class corporately is nothing short of an everyday miracle. We don’t take that lightly!

On top of all that magical teaching stuff, we know you care about each child. You care about their stories. We can tell. We can tell when you look right into their eyes and greet them in the morning (that doesn’t go unnoticed). And, we can tell when Jenny talks about her day and quotes little things you said (yeah, she does that). She knows you care. And, that’s so so important to us as parents… really really important. It’s because we know you truly care that I’m reaching out today and asking you to do something for Jenny that may seem slightly counterintuitive.

Jenny had a hard start. Children who aren’t in safe families where big people take care of little people often learn strategies to get what they need. One of those strategies is physical affection. It makes sense really. Big people respond to little people when they put their arms up and when they want hugs or a kiss. It works. But, it isn’t right. Our job, as moms and dads, is to show our children that we’re the big people who will take care of them, that we’re not temporary, we belong to them and we belong with them. Some days, John and I send that message well to Jenny and she receives it well. Other days, it’s a real struggle on both sides.

Would you be willing to help us in all this as you have Jenny in your care? It would be really helpful if you would partner with us to teach her that there are better, safer strategies than physical affection to get what she needs. At home, we are working on teaching her that we are always available and willing to give hugs and kisses but if there’s something she needs, she use words and simply ask for it. She often hears, “You know, if you need something, all you have to do is ask!” Another thing we have tried to teach is that hugs and kisses are for family, and high fives and fist bumps are for everyone else. We want to guard hugs and kisses as best we can so she learns boundaries and sees them as a “family thing.” So, can I ask you to do something that may feel a little strange at first? When she reaches out to hug you – as I expect she will – can you redirect her with a high five or a fist bump?

We want her to continue to feel the care from you that she has been because that’s important. We want her to know that we’d never send her somewhere we didn’t think was safe and that we trust you to take good care of her and teach her well. We know touch is a great way for her to experience that care. But, I truly believe that she’ll get it through the high five or fist bump paired with the consistency and personal attention that we know she is getting from you.

Let us know what you think as you find time to respond. We would love to keep the lines of communication open so that you are not only partnering with us, but we are partnering with you.

– Jenny’s mom

……………………….

Regarding a Child Who Struggles to Give and Receive Physical Affection

Dear Teacher,

We so appreciate you. You know how to successfully teach a child to do something he or she has not yet done before–which would be magic in and of itself. But, somehow, you manage to not only teach a child but teach him or her in a room full of children. Each one of those children learns in his or her own unique way. And, each child comes from a different place and brings his or her own unique needs into your classroom everyday. What you are able to do by teaching each child individually and the entire class corporately is nothing short of an everyday miracle. We don’t take that lightly!

On top of all that magical teaching stuff, we know you care about each child. You care about their stories. We can tell. We can tell when you look right into their eyes and greet them in the morning (that doesn’t go unnoticed). And, we can tell when Jenny talks about her day and quotes little things you said (yeah, she does that). She knows you care. And, that’s so so important to us as parents… really really important. It’s because we know you truly care that I’m reaching out today and asking you to do something for Jenny that may seem slightly counterintuitive.

Jenny had a hard start. Children who aren’t in safe families where big people take good care of little people are affected in significant ways. One of those ways is in giving and taking in affection. It makes sense. When a child hasn’t experienced safe and sufficient nurturing as a baby, closeness can be really hard. It can make them feel vulnerable and threatened. We’ve been working on that as a family, practicing giving and receiving hugs and kisses. And, we’ve celebrated a lot of growth there. But, we’ve always been very careful, intentionally guarding that closeness, reserving hugs to family only and practicing the exclusivity of our family, something Jenny, unlike most children who have not experienced a hard start, needs to learn.

We are excited to have her a part of your class this year, but we’re also a little anxious. We are concerned that as we widen her circle, the small but significant successes we’ve seen may be hindered. Would you be willing to help us in all this as you have Jenny in your care? Would you be willing to reinforce what we have been working so hard for at home? One way you could do that is by not giving her hugs or kisses; they’re a “family thing.” We do want her to trust other caregivers who we trust and build appropriate connections there. We aren’t opposed to touch; we know touch is important to connection. But, high fives and fist bumps are best for her (and they’ll go a long way with her!). Hugs and kisses are for family, for people you love; high fives and fist bumps are for everyone else, people you like and who like you. That’s what we want her to learn – which is way more important to us than all the letters and numbers combined.

Let us know what you think as you find time to respond. We would love to keep the lines of communication open so that you are not only partnering with us, but we are partnering with you. If you have questions, we welcome you to ask. I can’t promise I’ll have an answer for you, but I’ll do my best to find one as I know you are doing for my child and the rest of her class.

– Jenny’s mom

image by Emily Adcox


Child Who Waits: Moses

September 24, 2016 by nohandsbutours 0 Comments

Look at tiny sweet Moses and fall in love!

Born in September of 2014, Moses is just less than 18 months old. How he needs a mama to love him! Moses is described as a playful little guy who loves to interact with his caregivers. He likes to make sounds and call to different people and objects he sees, and he loves to laugh aloud when he finds something funny. He enjoys playtime and he’ll reach for nearby toys he sees. Although his caregivers describe him as quiet, he loves to smile and make noises when his caregivers tease and tickle him!


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Moses was only a few days old when he was found at the orphanage. He is currently in care at the orphanage where he was found. As of May 2015, he could raise his head if lying on the abdomen & could turn on his side. At that time he was not yet sitting or crawling, but could search for sound source and track moving toys. He was really good at visually following moving toys and people, and his caregivers reported that he can search for the source of sounds. He was also said to laugh loudly, and could pick up a toy near him to play. He could also smile at being teased. It would be great to see and update on little Moses and find out all he has learned to do and how he has grown and developed since May!

Moses is officially diagnosed with microtia and facial difference. He is also said to have a brain injury. A CT scan in his file, done in August 2015, does not show any brain abnormality. There is also an auditory test included in his file, which indicates sensory nerve deafness of his right ear. His file does not indicate any surgeries.


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Sweet Moses is described as a lovely child, and his caregivers wish for him to find a loving family and to have a happy childhood and beautiful future. They state that “we believe he will bring more happiness to a family.” Moses is so in need of a loving family to help him reach his full potential.

Moses’s file is currently on the SHARED list. If you already have an agency, advocates are happy to share his identifying information with your agency case worker so they can locate his file on the shared list. Just send us an email!

Also, WACAP is offering a $4,000 grant for qualifying families. Seriously interested families should download and complete their pre-application (no fee, no commitment) HERE. You may email the completed pre-application to WACAP with your request and the first available case manager will respond.

Making the Grade: Choosing a Classical Approach

September 23, 2016 by nohandsbutours 0 Comments

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Our decision to homeschool began like many other families’ journeys, I’m sure. We wanted to give our children a Biblical worldview, be a bigger part of their lives (no parents ever regret spending too much time with their children!), and have the freedom to choose our studies based on individual interests. We also hoped to …Read More

Find My Family: Alexa

September 22, 2016 by nohandsbutours 0 Comments

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Meet Alexa! Alex was born in October 2003 and is almost 13 years old. She loves dressing up and is an exceptional artist. Alexa has many good friends at school. Alexa’s caregivers wish is for her to find a loving family who can help her reach her full potential. Alexa herself has expressed her desire …Read More

Waiting to be Chosen: Annabelle

September 21, 2016 by nohandsbutours 2 Comments

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Oh my. Meet Miss Annabelle. This sweet baby girl is just one year old, and new to the list at HIC. Annabelle came to the orphanage when she was nine months old, and was found to have Down syndrome, and a CHD (ASD – report is in her file). You can read more about Down …Read More

Our Red Thread of Hope: An Advocacy Success Story

September 21, 2016 by nohandsbutours 4 Comments

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The Chinese have an ancient proverb that says, “An invisible red thread connects those who are destined to meet regardless of time, place, or circumstances. The thread may stretch or tangle but will never break.” Back in July 2015, the Lord called our family out of the Ethiopia adoption program, where had waited for over …Read More

Urgent Aging Out Child: Victoria

September 20, 2016 by nohandsbutours 0 Comments

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Sweet 13-year-old Victoria was found at the age of three, but just now had an adoption file prepared. She is now available to be adopted thanks to a new orphanage partnership with Madison Adoption Associates. Victoria is a Hep B carrier, but is otherwise healthy. She has just under 7 months to find a family …Read More

Making the Grade: Links for Parents of Kids with Special Needs Part Two

September 20, 2016 by nohandsbutours 0 Comments

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It’s September which means school is back in session. And this month at No Hands But Ours, it’s all about Education. From IEPs to OT, from homeschooling to Early Intervention, we’re covering the gamut of educational topics and how they relate to the unique needs of the children who have joined our families through adoption. …Read More

Meet the Contributors: Faith

September 20, 2016 by nohandsbutours 2 Comments

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Continuing today with our series in which we share a short Q and A with one of our contributors to give y’all, our faithful readers, a little more behind-the-scenes insight into the amazing group of writers assembled here. And it will also give each of our contributors a chance to share their heart in a …Read More

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