Special Needs Archives - The Sparrow Fund

November 20, 2019

He’s lovable just as he is {advocating}

“I don’t think anyone can grow unless he’s loved exactly as he is now,
appreciated for what he is rather than what he will be.” ― Fred Rogers

I can’t think of a better tangible example of this truth than the relationship that is easily noted between the ayis and “Fischer.” I look at him and see all that he will be capable of with the support of a family. I see how smart he is and how much he could progress given the right tools.

But his ayis, they see him for who he is now. They recognize what he’s capable of despite his circumstances. It’s easy for them because they’ve seen how far he has come – and they love talking about it.

He doesn’t want modified activities or to be treated differently. He wants to be treated like the older, smart kid that he is. And they do that so well.

He’s so capable, smart, and strong already. Just as he is now. You don’t have to guess what he’ll one day achieve to fall in love with this guy. And we can’t wait to meet the family who will tell him how lovable he is every single day.

Interested in learning more about this little guy whose advocacy name is “Fischer”? He’s currently available for adoption through AWAA. Contact info@sparrowfund.org to learn more about where he is and our experience with him, and contact our friends at AWAA to hear more.

Erin Garrison has been a pediatric physical therapist since 2010 and was first introduced to The Sparrow Fund through serving on an orphanage trip in October of 2016. It was during this trip that her heart was stirred and she was drawn to a big career change in order to serve children living in orphanages, their temporary caregivers, and families who move forward to adopt them. Her passion is to help equip and train the orphanage staff on developmental and handling techniques to assist in reducing delays. She also seeks to be a therapeutic resource for families as they transition children to home and get connected to the services needed. You can contact Erin directly at eringarrison@sparrowfund.org.

March 12, 2018March 12, 2018

Choosing Hemophilia

One of the first steps in the adoption process is filling out a Medical Needs Checklist, which is a daunting task. Typically, when adoptive families are considering whether they would be able to parent a child with particular needs from such a list, hemophilia jumps out as one of the scarier needs. That make sense. Hemophilia is pretty rare – only about 1 in every 5000 boys are born with this need. That means most of us have gone our entire lives without meeting someone with this condition. Because of that, most of us likely have very little information about this need, or we might even have some misinformation. Before I adopted my son, all the knowledge I had about hemophilia came from my high school world history class in which I learned that hemophilia was “the royal disease” that made people bleed a lot. That was it. Like many people, I assumed that hemophilia meant that a child might “bleed out” from a simple cut or scrape. Thankfully, I was wrong! That couldn’t be further from the truth. I have learned much since my first exposure in high school world history class, because my son has hemophilia. I have the privilege of watching him grow, learn, and joyfully engage with life. He is a typical boy who just happens to have a bleeding disorder. Hemophilia is very manageable, and it’s just a small part of our lives.

So, what is hemophilia, then? Children and adults with hemophilia are missing a protein in their blood that helps the blood to clot. These proteins are called clotting factors. To understand how to care for a child with hemophilia, it helps to know a little about the clotting process. A good analogy for the clotting process is a set of dominoes. Remember how you used to line dominoes up and then tip the first one over to watch them all fall in succession? The clotting process works the same way: there are 13 proteins, called clotting factors, that all work together, in succession, to build a stable clot. But, if one of those proteins (or dominoes) is missing, the clotting process stops prematurely. The most common type of hemophilia, Hemophilia A, occurs when a person is missing Factor VIII (factor 8). This is the kind of hemophilia my son has. Children with hemophilia bleed longer than others, not faster, and they bruise more easily than you and I do. Cuts and scrapes are treated much the same way as for a person with typical clotting. The biggest risks in hemophilia are bleeding internally, such as into joints, muscles, or soft tissues. But, the good news is that hemophilia is very treatable, and these children live happy, healthy, long, joyful lives.

Treatment of hemophilia involves replacing the child’s missing clotting factor. Usually, children receive intravenous (IV) infusions of their missing clotting factor two or three times per week. That may sound daunting, but it takes only a few minutes! We do my son’s infusions before breakfast (his choice) three times per week. Some children receive infusions peripherally (into a vein, like my son), and other children have a port into which their infusions can be given. When my son first came home, we had a wonderful home health nurse who came to do his infusions. After he was home for a couple of years, our Hemophilia Treatment Center trained me to do them myself so that we could treat on our own while traveling or when our nurse wasn’t available. I can’t say enough good things about the supportive care my son receives from the Hemophilia Treatment Center (HTC). They patiently answered my umpteen questions before my son came home, and the whole treatment team (a hemophilia nurse, pediatric hematologist, social worker, physical therapist, and education specialist) continue to be tremendously supportive as he grows. You can check the HTC Directory here to see if there is one near you.

You might be wondering what everyday life looks like for a child with hemophilia. Today, my son went to public school where one of his favorite activities is running on the playground. When he came home, he did several somersaults on the couch (much to my chagrin), and we played basketball outside on our driveway. He runs, jumps, falls, and gets back up again. In other words, he does all the things any other child does. The only activities I (and the HTC) restrict are contact sports like football and hockey. Heading a ball in soccer would be risky, too. (These activities would also be risky for a child without hemophilia!) He knows a lot about his condition, and he is even learning to do his own infusions. We spend just a few minutes per week on infusions, and those don’t happen every day. Otherwise, life looks like what you’d imagine with any child.

If you are thinking about whether to check “hemophilia” on your Medical Needs Checklist, know that it’s a very manageable need. You can read other family stories on the No Hands But Ours site. There is a wonderful, supportive group of families that would be happy to answer questions: just join the Hemophilia Adoption Advocacy Facebook Group. Reach out to your state’s chapter of the National Hemophilia Foundation. You will find that the bleeding disorders community is close knit and incredibly supportive. Finally, reach out to your nearest Hemophilia Treatment Center (HTC) and ask questions! I was fortunate that my HTC even reviewed my son’s file before he came home. They answered every question I had, and I have since discovered that they were right: hemophilia is a manageable need. If I can do this, I’m sure you can, too!

Kelly Cartwright is lead Mentor Mom for Hemophilia with No Hands But Ours, former member of the Board of Directors for the Virginia Hemophilia Foundation, and mom to an amazing boy with hemophilia and an equally amazing daughter. In her day job, Kelly is a professor of psychology and neuroscience, specializing in literacy and human development.

ADVOCATING

A few months away from 7 years old, “Ari” likes riding a bike, living life in tandem with his foster sister, and playing with toy cars. He currently attends kindergarten with his foster sister. Sadly, his birth family likely found themselves unable to care for his medical needs given that he has hemophilia. He needs a family committed to honoring his relationship with his foster sister who is also waiting to be adopted. He’s currently available through Madison, a good agency which is offering a $500 grant to the family who wants to make him their son. Contact info@sparrow-fund.org to learn more about where he is and our experience with him, and contact Sarah at Madison to learn more about him and what the process would look like.

September 27, 2016

Hold the Hugs. High Fives and Fist Bumps, Please.

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.

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.

lyds_62-firstdayofschool

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

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

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Kelly founded The Sparrow Fund along with her husband Mark in 2011. She works alongside Mark in his full-time purposeful work in China and works part time as a therapist at the Attachment & Bonding Center of PA, Kelly has a particular interest in (a) encouraging parents who are struggling to attach with their children, (b) helping parents walk with their children in understanding their own stories, (c) helping couples continue to pursue each other and grow together while they parent their children as a team, and (d) training and supporting orphanage staff in China to build relationships with children and each other. Kelly and Mark have been married since 1998 and have 3 biological children and 1 daughter who was adopted as a toddler from China in 2010. You can learn more about their journey on Kelly’s blog.

March 24, 2016

Adoption Reflections

When we first followed God’s call for adoption, we had an idea of what our family would look like, but God had a different one. Initially, my husband and I said we only wanted a little one as young as we could adopt without any special needs. Since I would never carry a child in my womb, we wanted to experience all those fun benchmarks parents enjoy with their children, and frankly special needs scared us. However, God kept pointing and dragging us toward the special needs, and the in the end, He opened our hearts to three precious children with hand and/or foot deformities who have transformed our lives in ways we could never have imagined.

11181217_10107900757884744_498877627850055729_n So our sweet little Grace Lihua entered our lives at 18 months old. She brought us great joy, and just like any other toddler, we had the opportunity to teach her English, experience the joys of potty training, etc. We have watched her grow in beauty both inside and out, way too fast! She is now six years old and continues to amaze me on daily.

Then God did something crazy. Not crazy to Him, of course, but crazy to me. He brought an eight-year-old boy into our lives. My husband first saw his picture in an email from our adoption agency and simply sent me a text that said “I want him”.

I’m gonna be honest with y’all. When I saw that text, I laughed, just like Sarah (Gen. 18:12). First of all, a text like this was very out of character for my husband. Second, there was no way I was going to adopt an eight-year-old boy. Think of all we had missed in his life. He wouldn’t speak English. How would he respond to discipline at the age of 8? Would he even want his life disrupted? I had any number of excuses and fears. But God had a different plan and He changed my heart.

12189967_10107900757859794_3578549754294173009_n And so Anthony Jianyou became our son at the age of 8. It was by no means easy. The hardest thing for us was the language barrier. He wanted to talk with us, discuss things with us and vice versa, so we struggled for a while with a translator app, but God is faithful. This was His plan, not ours. I worked with Anthony daily, and after being immersed our lives, he learned English and our love grew and developed as did our ability to communicate. The things we learned about our sweet boy still bring tears to my eyes. He told us that while he was in China, he often wondered if there was someone out there greater than himself who loved him. Now his love for the Lord brings such joy to our hearts as does his heart for sharing God’s love with China.

Our family still felt incomplete. We knew there was one more little girl waiting for her forever family.

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Enter Eva Hanting. She was four at the time of her adoption and her transition has been the most difficult. She spoke a regional dialect so it was very difficult to communicate at first with her. She was unaccustomed to discipline and was very attached to her care givers. At four, she had a great desire to understand everything we asked of her so we struggled for a while, but now as we approach the one year mark with our precious girl, the change is remarkable. For the first time, this past week, she told me that she now liked America and did not want to go back to China. This is a huge step for her. And she truly has the desire now to obey us with a happy heart. Oh, and did I mention she is basically fluent now in English.

No adoption is easy, Whether it is a older child adoption or a baby, there will be ups and downs and joy and pain, but oh the rewards and beauty of seeing their lives changed forever. “A father to the fatherless, a defender of widows, is God in his holy dwelling. God sets the lonely in families . . . ” Psalm 68:5-6a

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After struggling with infertility for 5 years, God led Suzanne and her husband Adam to His Plan A for their lives—adoption! Their daughter, Grace Lihua, came into their lives in 2011 from the Fujian Province, China. Their son, Anthony Jianyou, joined their family in January of 2013 from Shanghai, and Eva Hanting joined their family in May of 2015 from the Hunan Province. After a career in politics, Suzanne is thankful for God’s provision in their lives that now allows her to work part time as a Pilates instructor while home schooling their children and working as a part of the WAGI leadership team. You can follow their adoption journey and life on their blog, Surpassing Greatness.

September 24, 2015September 24, 2015

True.

Six months ago I poured my heart out to a friend via email:

Because you are also an adoptive Mama, I think you’ll understand that I find myself very much at a loss to remember why God called us to do this in the first place. I know the “right” answers: that He loves children. That we are adopted and so we do the same. That justice for the least of these is so crucial to the Kingdom. But truthfully, I can’t quite remember my own heart answers.

Why did I want to partner with God in adoption?

Did I really know what I was getting into?

Why doesn’t God heal all of JM’s body, instead of just in part?

I want very much to keep the idealistic mentality that God really does redeem the stories of kiddos like mine, but sometimes even down to my very core I am wrestling with the question, “Is God actually good toward my son? Toward our family?”

Of course, even having these questions at all feels like a terrible betrayal of the faith I’ve held all my life. That’s where much of the depression comes from. I have not yet found God’s continued delight in me even as I question whether or not He’s the God I thought He was. I don’t think He’s afraid of our rants and raves and questions and accusations. As I’ve been living and breathing the words of many of the Psalms I keep thinking, “God let David rail against him too and didn’t strike him dead for blasphemy…” But this is a life-altering journey for me just as much as it is for my little boy. I chuckle at my naivety all the time. I really didn’t know that God would use my son’s adoption to unravel me.

I just read a verse in Hosea this morning that I find is my question and prayer: “For He has torn, but He will heal us.”

Does He still heal our kids, dear friend? Does He still heal us too? Or is it possible to be failing so miserable at being an adoptive Mom that I’ve ruined the possibility of healing for my son and for me?

There is a playlist of songs on my iPod that I listened to frequently as we prepared to make JM a member of our family. I’d listen to it in the car as I drove, looking into the backseat and picturing my boy finally there, swinging his legs and singing along to the radio with me. I’d listen to it through headphones, facedown on the couch sobbing because every minute felt like an eternity before I could tell him, “Hi, I’m Mami.” I listened to it when I couldn’t sleep, as I prayed a mother’s prayer of protection over my boy as he woke up thousands of miles away from me in a different time zone.

These songs have weathered many storms in my journey toward motherhood.

I haven’t gone back to that playlist recently, although some of the songs filter through every now and again when we’re just listening to our music on shuffle. But this morning as I worked, I intentionally chose that list. Knowing the order of the songs, knowing what songs would come up. I picked it and prayed that God would show me something new in the familiar refrains.

He didn’t disappoint.

There is a song by Sara Groves called “It’s True.”

I listened to it, as I have hundreds of times, and felt a comforting thrill in my soul as I listened to the words,

“It’s true, a God who came down to find you.”
“It’s true, angels sing through the night ‘Hallelujah!’”

In one of my recent counseling sessions I explored how the word “grafted” – used often in the adoption world – has taken on new meaning for me through the journey of adopting our son. At first, it felt lovely and beautiful. “Grafting” a family meant creating something new like a flowering tree or a hybrid fruit, juicy and sweet. The idea of being grafted together made my heart leap with excitement.

Ahem.

“Grafted” means beautiful, yes. But it is a beauty forged in the fires of battle. It is a healed beauty. It is a beauty that first knew deep pain. I told my counselor that now I know we are “grafted,” but as burn patients understand grafting. To be grafted is to have a wound that requires deep cuts and stitches before it heals. A wound that will continue to burn and ooze agonizingly long after you want it to be healed. We lived in the proverbial “ICU” during our first year and a half at home. All three of us have the scars on our hearts to prove it. (We will likely find that our wound reopens at various stages of our life as an adoptive family.)

But we are healing into a grafted family. And it is beautiful. My heart does leap with excitement as we become.

I wrote this in my journal just last week:

This season feels like one of rest and fulfillment after a really hard climb, complete with falls, scrapes, and painful bruises. It feels as though we’ve reached a huge meadow after a tortuous hike and can rest here for a while in the beauty of flowers, sweet breezes, butterflies, a bubbling brook, a shade tree, and a picnic lunch. I am feeling full and alive and rested in a way I haven’t felt in a long time. A “before we started our adoption” kind of long time. Back in 2013 kind of long time.

As I listened to the words of these special songs, my heart breathed out a sigh I didn’t know I’d be holding. Oh, how we prayed for Him to find us in our hard days! Oh, how we prayed for songs of comfort in the night! Oh, how how we ached to believe that what we were fighting for was true!

He was answering all along.

And then I heard another song. A rejoicing song. A song we’ve played over and over and over. One of the first songs JM “sang” for us in the car one day last year.

“I am not who I once was,
defined by all the things I’ve done.
Afraid my shame would be exposed,
afraid of really being known.
But then you gave my heart a home!

So, I walked out of the darkness and into the light
from fear of shame into the hope of life.
Mercy called my name and made a way to fly
out of the darkness into the light.”

– Ellie Holcomb, Marvelous Light

Two notes into the song, JM came into the kitchen dancing, laughing. He was singing the words of the song to me, not knowing that his very life is the words of this song.

It was one of those moments when the world stands still, everything but him turning blurry in my vision. Watching my son, home, singing the words to a freedom song in my kitchen. Believing with me that the truth of what we fought together has brought us into the marvelous light of God’s healing in a way I used to only dream about.

So Mary trusted God more than what her eyes could see.

– The Jesus Storybook Bible

Now my eyes are seeing.

He does heal our kids. He does heal us.

For He has torn, but He will heal us. (Hosea 6:1)

It’s true.
Hallelujah.

_____________________________________________

Karli Smeiles is a wife, mother, and birth doula. She finds inspiration for her writing in the faces of her boys, and in the abundant love of a redemptive God who recycles everything for good.

Karli and her husband welcomed their first son through adoption in February 2014, discovering along the way just how beautiful and painful adoption can be. The Smeiles family grew by one more as they welcomed a biological son to their family in May 2015!

Find more of Karli’s writing at www.lovesongforHim.wordpress.com.

August 13, 2015August 20, 2015

Things No One Told Me About Adopting a Child with Special Needs {Summer Flashback}

Before Afua joined our family, I read many books, I researched the best doctors and hospitals and I spoke (or facebook messaged, texted, skyped…) with moms who had adopted children with similar special needs. But no matter how much I prepared, some things still took me by surprise. Maybe they never came up in conversations or maybe this is the stuff we don’t usually talk about. Adoption is a beautiful way to grow a family (we had adopted before and knew this). Adopting a child with known special needs is a beautiful journey with its unique challenges that stem from loss, trauma and often unmet medical needs.

Learning the child’s diagnosis

I remember sitting at our Neurologist’s office and he patiently reviewed Afua’s MRI results with me. He described the areas of her brain that were affected by the lack of oxygen, that it likely happened during a certain part of the pregnancy and that in the end, the diagnosis given to her in Ghana, cerebral palsy, was correct. Hearing those words took my breath away, made me speechless as if I had no clue and this was a newborn baby with a devastating, unexpected diagnosis. I knew it was coming. This wasn’t a surprise. But in that instant I grieved the diagnosis as if I had not known. Adoptive moms are not superheroes, we grieve our children’s diagnoses as all mothers do. We may know what’s coming when a doctor confirms the test result. But it’s just as real and sad.

Then came a diagnosis I did not expect. The audiologist came to me as Afua was still in surgery.

“Profound hearing loss”
“it is unlikely she hears speech at all”
“deaf”

Tears were streaming down my face as I listened to her explain waves and decibels and hearing levels. It was like a foreign language and all I wanted was to hug my girl. But she was still in surgery so I sat in disbelief.

We are not extra tough as we process new diagnoses that sometimes come unexpectedly. When we say “yes” to adopting a child with special needs, it is not because we are expecting an easy road or we somehow are up for anything. We say yes to a child and we join their journey of medical diagnoses, different abilities and navigating a world that isn’t always as accepting as we want it to be. Because we firmly believe that every child regardless of their differences is deserving of a loving home and a family. And in the midst of our “yes”, we realize how much we needed them too.

When others notice your child is different

I remember the first time we went to a high school football game. Afua was in a stroller and I took her to the concession stand. Two little girls stood in front of us and one kept looking back. Then came the dreaded words: “What’s wrong with HER?” Don’t worry, I handled the situation with adult maturity, kindness and compassion (with a little bit of education thrown in for good measure). But it bothered me. It made me sad that there were children who were not around children with special needs. Children who didn’t know a nice way to ask why a child was in a stroller when they should be walking.

The truth is, as I have parented Afua, the less I think of her disabilities. I see my daughter. I know her smiles and her expressions. We have a language and I know how her body moves. None of it is strange or unusual to me. But other people (strangers usually) will remind me that she is not typically abled. They do it by their looks, their stares and their comments.

Friends may or may not stick around

This journey is hard to understand, right? I’ve had people ask me why we would choose to parent a child with special needs. When you adopt, you get to pick, they say. Some have hinted that we are trying to prove ourselves to be special, faith filled or we just may not have thought this through. They know our time alone as a couple is non existent. They see the way our life is stretched thin. Some choose to continue our friendships (even thought we aren’t always the most consistent company). Others have stopped asking, and that’s ok too.

What I have found is that the friendships that have remained have become so special and authentic. There is no pretending that this is all easy and smooth. They also see the absolute beauty that exists, the way Afua is changing all of us and how she is an equal member among the siblings. Those who take the time to know Afua get why she is in our family. She belongs with us and we belong with her.

You will doubt your abilities and it’s ok

I am not an organized person by nature and it is a vital skill when parenting a medically complex kiddo. I also work part-time which makes things challenging. Afua is one of 5 children and they also have appointments and needs to be met. Honestly, there are days that I wonder how to juggle it all. In the process of figuring it out, I have learned to let go control (so hard!!!) I’ve reached out for help (so humbling!!!) and I have had to find organizational tools that work for me.I am still struggling with this area of parenting but modern technology is helping me keep most of my appointments :)I know I can’t do this by myself and I don’t have to. I have a great husband, wonderful family and friends and also a caregiver that fills in as needed. Our life is richer because we aren’t doing it all alone.

You will find allies in the most unlikely places

Parenting a child with special needs means you spend a lot of time in local children’s hospitals, therapy clinics, surgery waiting rooms and doctor’s offices. There you will meet
other families who are exhausted yet so proud of their children just as you are. We give each other “the nod” and in silence we know that there are others who are walking this path too. And whether we chose this journey or we discovered a diagnosis along the way, there is a mutual acknowledgment of the hard.
You will meet therapists who are innovative, energetic and supportive. They tell you to take a break and get a cup of coffee while they help your child achieve a new skill or make them more comfortable. You meet doctors who devote their lives to children and their families and you are not just a number. They explain things in a way that makes sense and guide you through tough decisions as if they were making them for their own children. Allies are everywhere and it makes things a bit better.

I share these thoughts in hopes that I am not alone. That others may feel the same grief, the same joy and the same purpose in parenting a child with special needs. That maybe your friendships were tested also and the invitations are fewer. That maybe your child wasn’t adopted but you recognize these feelings as universal. And maybe this opens a conversation about special needs, adoption or even prompts someone to reach out to a family raising a child with special needs.

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Jenni is a mother of 5, married for 19 years to her high school sweetheart Eric. Her children range in age from preschool to high school by birth and adoption. Jenni works part-time in a charter school system providing therapy services for children with special needs. Jenni is a advocate for orphaned children with special needs and is passionate about family preservation. When she is not driving her minivan to various activities and appointments, she can be found blogging at Joyful Journey.

May 5, 2015May 5, 2015

Their Vision is Valuable {After}

Starting in May, every first Friday of the month until October, the quaint town of Phoenixville explodes with activity. Streets are closed, people are everywhere, and parking is atrocious. Restaurants are all abuzz with long waits for good eats. Happy hour becomes happy hours as bartenders can’t keep up with the demand. And, there, in the middle of it all, is The Bridge, our church office, where on this first First Friday of 2015, something very very special happened.

Portraits of 12 children were set up in the front window, and their art filled every square inch of the rest of that space. Hundreds of people came through Friday night–the vast majority of whom just wandered in on their way to catch dinner with friends. I saw their eyes widen as I explained the story behind the exhibit and showed them the pictures of the children who created it. I smiled with them as I told them about the little boy who loves to dance and the little girl who now lives in Omaha with her new family. I saw parents pick children up and point out details in the pictures. I heard them talk about what they would name each one. I saw groups of teenage girls gushing at how cool one of the pictures was and snapping pictures on their iPhones to remember it. I heard a young woman ask her friend if the text underneath each photo’s name was “from the Bible or something.”

There we were, right in the middle of all the activity, showing people the faces of children with special needs who don’t have families, who call an orphanage home. There, in the middle of the bar scene, were 30 incredible pictures of hope and beauty and life. There, in the middle of crowds of people, were Bible verses next to each one of those pictures that drew those crowds in.

I was all alone in that space at the end of the night. While the sound of several different bands playing throughout the streets could still be heard, it was quiet in there. As I swept up cracker crumbs and packed up brochures, I thought about how at that very moment, the children who created all that beauty were probably sitting in their classroom together–all but the one sweet girl who was likely sleeping in her new bedroom in Omaha. Whatever they were doing right then–reading, learning math, staring out the orphanage window, holding hands with their friend–they had no idea how they had just changed the world on the other side of it. I can’t wait to tell them all about it. I can’t wait to tell them again how valuable they are.

We set out to change the picture some may have in their head of a “special needs orphan” and what he or she is capable of. We set out to make louder the voice and impact on the world that those children who we have grown to love have. We set out to honor them and honor the One who created them. At the end of the night, I believe that happened; I really believe that happened.

We believe this show isn’t a once and done thing. We believe it should happen again, maybe again and again. Who knows. It will cost something, and it won’t be easy. There’s work that would need to be done to make it happen. But, I think it should because the world change is simply not limited to one night in one town in Eastern PA.

If you want to hear more about that, if you want to be part of that world change where you are, if you want your church or ministry to host this in the middle of whatever activity you are in the middle of, email me at kraudenbush@sparrow-fund.org. We’re working on putting information together for whoever else may want a part of this.

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Kelly has a passion for supporting adoptive families, specifically to encourage parents to be intentional and understand their own hearts more clearly as they seek to care for their hearts of their children. Kelly cofounded The Sparrow Fund with her husband Mark in 2011 to serve adoptive families. After a long time using her Master’s degree in counseling informally, Kelly recently joined the team at the Attachment & Bonding Center of PA as a cotherapist. Married to Mark since 1998, they have 3 biological children and 1 daughter who was adopted as a toddler from China in 2010. You can learn more about their adoption story, how they’ve been changed by the experience of adoption, and what life for them looks like on Kelly’s personal blog, My Overthinking.

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We’re building the nest this month!

Head right on over HERE to find out more and learn about the 40+ businesses that support adoption and the work of The Sparrow Fund!

December 31, 2014

Adoption is Hard #top10ofalltime

Children from hard places who have experienced trauma
(and I would argue that losing your birth family is always traumatic)
are going to have attachment issues.

Their trust has been broken
by the very people who were
supposed to be the most trustworthy.

Your words mean nothing to them. They have no reason to trust what you say and they have every reason to doubt. They have been hurt, they have had to learn to protect themselves, they lack the ability to empathize, and they are scared to death, they are master manipulators and they want to be in control.

WARNING: Their behavior is going to reflect this.

And it is going to make you feel crazy.
And parenting them is hard CRAZY HARD.

Even if you fell in love with their referral pictures, chances are that once you enter this crazy hard world of loving a child with attachment issues, you are not going to FEEL like you love them. No, it does not FEEL the same as parenting a healthy attached child. Not the PC thing to say, but true. It’s hard to feel love for a child who tries to sabotage you at every turn.

But, you see, you DO love them:

You love them by doing the loving thing over and over and over.

You love them by parenting them in the way they need to be parented with high nurture and high structure (despite how you parented your other kids or how your church friends parent).

You love them by holding them when they are raging and telling them that you aren’t going anywhere.

You love them by praying for them and fighting the spiritual battle on their behalf.

You love them by not being easily offended.

You love them by not being easily manipulated.

You love them by not giving up, by not confirming their suspicions that you are just like all of the others who abandoned them and broke their trust.

You love them by laying down your life, picking up your cross, and dying to yourself

over

and over

and over.

Yes, you love them. . . and by the grace of God, someday, yes someday, you will wake up and realize that they believe you and they trust you and both of you FEEL, truly feel that phileo (friendship) love that you have both been longing for.

Dear “trauma mama” if you are in the trenches today, lovingly parenting through the crazy-hard, please do not lose heart! Do not give up or be easily discouraged. Fight the battle by dying. Just for today, lay down your life and choose love.

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Blessed beyond measure to be a child of God, wife of Disco Man, mother of ten awesome children (9 adopted from “hard places”), and friend of many. Messed up in most ways and so thankful for His saving grace in my life. Trying to be thankful for His refining fire as well. Desiring to live fully, every day, for His glory alone. You can follow their life at Grace and Glory.

December 31, 2014

The Wrong Diagnosis #top10ofalltime

Several months ago, I took Evangeline, our adopted daughter from Ukraine, five years old, diagnosed with Down syndrome, to a developmental pediatrician.

“I heard this doctor is good at what he does, and I want his opinion about Evie’s lack of development since she’s been home from Ukraine,” I affirmed rather loudly to my husband Sergei in an effort to hide that really, I was taking Evangeline to this doctor for a second opinion.

A year ago, Evie was evaluated at the Erikson Institute here in Chicago for Autism. At the time, her main activities included rocking back and forth, sitting on her bed, and looking at a light-up toy. Her eye contact was sporadic at best, and she could not tolerate textured food nor touch (unless it was rough housing). I was certain we would come home with a dual diagnosis of ASD (autism spectrum disorder) and Down syndrome because almost every time I reached out to my beautiful blond little girl, my hand would get slapped.

After several appointments, Erikson concluded that Evangeline was not on the spectrum but probably suffered from the debilitating effects of orphanage life paired with cognitive and developmental delays that can accompany Down syndrome.

But I wanted an answer.

When the report came in the mail, I opened the letter while sitting on the toilet seat behind a locked bathroom door and cried. On some level, I wanted the dual diagnosis because I wanted answers. I wanted to know why Evie ground her teeth constantly, why she sought out dust and dirt to eat but refused real food. I wanted to know why she scratched her sisters when they tried to hug her, and cried at loud noises, and sat off to the side of our lives alone, most days, rocking.

But I did not get a concrete answer. I got a “keep doing what you are doing. Find more therapy opportunities, give her time to bond with your family.” And slowly over the next few weeks, I started to shut down. I found it too painful to try to connect with my daughter. For months, I went through the everyday motions of caring for my family as best I could, all the while holding back from climbing into bed. I no longer attempted to bond with Evie. If she was fine being a part of our family without really being close to me, than maybe, I could live like that too.

And, then I realized something.

I was seeking out the wrong diagnosis for the wrong family member. Sure, it was good to have Evie evaluated a year ago. She certainly had characteristics that could point to ASD. But really, I was the one who needed the most help. I was struggling from post-adoption depression, which could have only been aggravated by a little post-traumatic stress disorder thrown in after Polly’s stroke, diagnosis of Moyamoya, and two brain surgeries. After our time at the Erikson Institute, I quietly unravelled.

I have struggled with depression all my life, but alas, it is kind of like that pesky monthly period for women. Every month I am shocked that my foul mood results with menstruation. And I am 36 years old!

Depression is like that for me, too. It sneaks up on me: a few aches and pains, feeling a little down in the dumps, sleeping poorly. I fight, I do what I absolutely need to for the family and then when I can’t anymore, I get into bed and I don’t get out.

I started to see a doctor and a therapist, but I wasn’t feeling better. I cried out to God to help me, to show me how to trust him and get back on track, but to no avail. I struggled for months, but still, somehow managed to post perky facebook stati often enough so that people outside my direct family wouldn’t suspect a thing.

But I was drowning.

This past fall, God gave me the strength to try again to get help for my depression. I went back to my doctor and let her put me on a higher dosed anti-depressant. I started seeing a different therapist and we clicked right away. I started to wake up in the morning and notice that the sun was shining.

And I saw Evangeline, a little girl considerably changed from a year ago.

Since Evie has been with us (over two years) there have been little breakthroughs here and there in our bonding. I liken them to nicking the surface of a frozen lake with a BB gun.

Now that I am above water again in life, the ice is starting to thaw. I can sit a stare at Evie for a while, marvel at her button nose, appreciate her smell, want to pull her to me.

So, why did I take Evie for the second opinion last week?

Because I wanted to make sure that a dual diagnosis isn’t in the picture for our girl. A lot of her behaviors have fallen away but she has a lot left. And although we are doing much better, I am now struggling with the guilt of that missed time when a shadow of a mother was parenting my daughter.

At the appointment, Evie climbed up into a chair, uninterested in the train set the doctor attempted to entice her with. But she laughed when he tickled her, and followed his finger as he played with her, and looked both the doctor and me in the eye almost the whole time.

I loved the doctor. He was a bit brash and un-orthodox (took a text from his wife during our interview and laughed out loud at what she wrote :). But he cut to the chase with me and it was just what I needed.

“I don’t see any definite red flags regarding a dual diagnosis off the bat, of course, if you’d like, we can do a full evaluation of Evangeline to get more in-depth. But I have to ask, why are you here? You’ve already had your daughter evaluated at Erikson?”

“Because, well”, I took a deep breath. “Because I am afraid I am not doing enough. Our other daughter got sick and ended up needing two brain surgeries six weeks after Evangeline came home from Ukraine and I. . . well, I’ve struggled with depression.” I kind of left my answer there but in my heart I added, I am afraid that I have already failed her.

“Mrs. Marchenko, your family has been through a very difficult time these last few years. I want you to know, you are doing a good job with your kids.”

I had to look away as the tears pooled in my eyes.

“And now, Ms. Evangeline,” the doctor turned to Evie and let me attempt to compose myself.

After the visit to the doctor, I realized I had been looking for two things: 1) the wrong diagnosis, and 2) validation that I am the right mom for my child.

Adoption is beautiful, but it is also very hard.

With God’s help, we all can be the right parents for our children.

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Gillian Marchenko is a writer, speaker, and advocate for individuals with special needs. Her writing has appeared in Mom Sense Magazine, EFCA Today, The Four Cornered Universe, and Chicago Parent. Gillian lives in Chicago with her husband Sergei and their daughters Elaina, Zoya, Polly, and Evangeline. Connect with Gillian on Facebook or Twitter, check out her website at GillianMarchenko.com, or follow her family blog Pocket Lint.

December 15, 2014December 13, 2014

Things no one told me about adopting a child with special needs