Tag Archives: National Adoption Month

Parenting a Child with Down Syndrome

So what’s it like to parent a child with Down syndrome? How long do you have to read this article? Because I could probably fill a book with the myriad of answers to this question. So for the sake of blog etiquette, I’ll keep it as succinct as possible.

My personal experience only goes so far. Our son, Kirill, was adopted from a Russian institution at the age of five and he’s been home with us for 2.5 years. So a lot of our experience has been influenced by the neglect and trauma of living in an orphanage for the first five years of his life. Our experience is vastly different from many of our friends who have biological children with DS, or who have parented their adopted children with DS from birth or soon after.

First, let’s talk about the medical stuff because people are always concerned about that. Kirill doesn’t currently have any additional health complications that sometimes accompany DS. However, we had to do a lot of testing to rule out any of these common issues AND we had to do a lot of interventions and therapies (still do) to help him learn to do many age-appropriate skills. Medically, we had special X-rays of his spine in case there was any sign of instability, extensive heart testing to make sure there were no issues there, and a swallow study. At first, Kirill couldn’t swallow normally and we had to thicken all of his foods and liquids to make sure he didn’t aspirate on them. We worked with a speech therapist and an occupational therapist on swallowing skills for a few months and these issues quickly resolved for him.

Kirill also had a lot of issues with his eyes and we had to go to a specialist who works with children with his specific condition (strabismus). He also had really bad ear infections and gastrointestinal infections. It took us a little while to sort all of that out too. He has tubes in his ears and he had to be on a special diet/take lots of antibiotics to get his guts regulated and clear of infection. He still needs checkups every six months on both his eyes and his ears.

At first, getting all of Kirill’s doctor’s appointments and therapies set up was hard. We had four therapy appointments on a weekly basis. I kept charts and meticulously wrote down every single thing he did.  I did choose to let my professional goals slow down, with the knowledge that both the doctor’s visits and therapy sessions would likely decrease as Kirill grew older, and I could always work later. (Other parents don’t have the same flexibility as I did, which doesn’t mean they are forced to choose between working and caring for their child. The therapists go to the day care in that situation.)

As far as just the hardest thing we deal with on a day-to-day basis, potty-training has been our greatest parenting challenge. Due to low muscle tone and hyposensitivity (difficulty feeling sensation), we are still working on potty training (Kirill is 7. Average age for children with DS to be fully potty trained is 8…so we are right there with the average). Another difficulty we have with Kirill is socially appropriate behavior. He pushes, eats off other people’s plates, and doesn’t sit still very well (also sounds like a typical child at time…ha). Both of these are to be expected and are not impossible to learn for children with DS, just a little harder to teach/learn.

Kirill also doesn’t speak so that presents a lot of extra challenges. I’ve read percentages of kids with DS that never learn to talk at all…it’s not that high…most children with DS do learn to talk at some level. Honestly, I don’t even care anymore if Kirill talks or not. Sometimes, his non-verbalness (is that a word?) even comes in handy. I never have to worry about him talking incessantly on long car trips. He doesn’t talk back. I get lots of “quiet time” if I just have Kirill around. We have another son who doesn’t have special needs. He is on the opposite end of the spectrum…hyperverbal even. So it’s kind of a nice balance. Many parents of adult children with Down syndrome that I’ve talked with often comment upon the fact that their son or daughter with Downs is the “easiest” of the bunch. Although the individual stories will vary, the overall portrait of family life with a person with DS positive. Is it harder in some ways? Sure. But our family motto has become “easier is not better”.

When other people describe children with DS, they often say things like, “They’re so happy all the time!” or “They just go with the flow and are easy to please.” Well, I’m here to tell you that is a myth. Sorry to disappoint, but Kirill has the full range of emotions that any other human being has and then some. He’s really good at letting us know when he’s upset. I think that myth may be perpetuated by something that I DO see in Kirill. He is easy to get over things. He doesn’t really hold a grudge. His frustrations are the same as our other son, but I do think he “gets over it” faster than Clayton. However, that isn’t true of every child with DS.

Which leads me to the main thing I want you to know about parenting a child with DS. It’s very much like parenting any other child. My joy and heart come from seeing Kirill succeed, watching him grow and learn, and looking forward to his future. Maybe my tune will change as he gets older and we face new challenges, but I don’t really think so. God has always given us what we need when we need it. We just take it one day at a time around here. Kirill has taught us to slow down and not worry so much about tomorrow. It’s actually a pretty awesome to be able to realize that in a world where people get so caught up in the rat race.

A lot of people ask, “Will he ever (insert skill here…talk, potty, etc). Well, we don’t know. What we do know is that Kirill is limited. He’s more needy than other children his age. He’s vulnerable because of his special needs. But so am I. So are you. We are all limited, vulnerable, and needy.

I guess that’s where Jesus becomes the common denominator for us all. We all need help…and my help comes from him and the people he uses in my life. We all need community and family and other people with whom to be interconnected. We all need help from Jesus and each other to do life.

 

So maybe life is harder with a child with DS. Maybe it’s just different. All I know is, I wouldn’t have it any other way.

 

By Tesney Davis, Parent to Kirill from Russia

Video

He took our ‘Yes’ – The Boulton Family

There were two main concerns my husband and I had about adopting a child with Down syndrome. How would it affect us, and how would it affect our other children? As we talked and prayed through our concerns we knew that this is what God was asking of our family and we trusted that He would cover it all. The truth is every time you add another member to your family it changes the whole dynamic. There is less time, and less money. But for us what we were to gain was so much more.

We mourned the loss of the dream of a one bedroom retirement house on the beach. We mourned the empty nest that will never be. We mourned the dreams we had for ourselves. And then we allowed God to anoint us with His oil of JOY for the dreams He has for our lives, which we know FAR EXCEED anything we could imagine.

We talked with our kids about the changes that were to come. We would need their help. We would be asking much of them. They were excited! They were ready to welcome another sibling into our family through adoption.

As God would have it, He took our ‘YES’ and ran with it! God brought us TWO BABIES!  We took placement of our Ruby in August 2012, and Conner came home in May 2013.  Both just a few weeks old when we got them, and just 11 months apart from each other.  Both with Down Syndrome.

I wish you could peak into my home and see what these babies have done to us. They are our little gifts. They are healers; they are joy; they are hope; they are angels from heaven. They have given us compassion and patience. My big kids are undone. They would do anything for their babies; and they will defend and guard and protect them always. They walk around wearing Ergos; they hold them and feed them their bottles. They change diapers; they sing songs; they cradle and rock, play hand games, and are learning sign language together. I had no idea how God was going to use our YES and these two blessings to change each of us so radically.

As evidence of how these changes have affected our children, our 12 year old son was given an assignment to creatively express what “inspiration” is to him. His inspiration is his family. This is the video he created.

His video won 1st place in his school, and was entered into the district competition where it also won First Place. Now it moves on to the County competition where more people will see how our family chooses to follow Jesus.

It is wise to pray and discuss and seek counsel before making an important decision like adopting a child, particularly one with special needs. We all worry about how growing our family through adoption can negatively affect our children. The truth is adoption is always hard. It is the result of brokenness. And in the hard, each of us, including our children, have the power to choose how we are going to respond. I choose to trust that God is faithful, and that even in the hard and the broken, the successes and the failures, He is ever changing each one of us to be more like Himself.

— Lyndsay Boulton, U.S. Liaison to Village of Hope

The Faces of HIV in 2013

I was driving to work this morning and passed by a billboard that reads, “I am living with HIV and my brother is standing with me.” As I read it, there was this moment inside of me where I *forgot* that I too am living with people who have HIV. And just as fast, the flash was gone and I remembered my babies.

The truth is, I never thought this would be my life. I mean, come on. MY life? Single and raising not one, but TWO children who have HIV?  Sheez. I must be crazy!  Here’s some more truth:  I never {okay, very rarely} think about it!  My boys, wrestling in full-nelson style on the floor?  Nope. Doesn’t occur to me. Wet beds, runny noses, coughs, vomit?  Never think of HIV.  Leah and Seth sharing drinks, food, baths, and germs?  Not a second thought. My kids engaged in straight-up-mania in the jumping pool?  Zilch. Is there a chance one of them could get hurt and bleed? Um, yea. There’s always that chance! But if they bleed — hear this now — they are not going to “catch” HIV from each other.  Period, full stop.

More truth? Listen up. I don’t think our friends think about it either. {gasp} That’s the thing about the truth. Once you know it, you’re not afraid!!!

I pray that those of you who are considering adoption would consider that HIV is, as our founder Kiel Twietmeyer has said, a “cheater” special need.  It is medically manageable and not scary.  For those children who are in need of a loving home, could God be leading YOU to parent a child with HIV?  Are you willing to step out in faith for this?

 HIV Blog 1

Or this?

 HIV Blog 2

Because this is the face of HIV today:

HIV Blog 3

And this:

 HIV Blog 4

What are you waiting for???

HIV Blog 5

Addicted to God Through the Orphan

This post is by our staff member, Jen Knapp:

Two years ago today, with great anticipation, I boarded a flight for Accra, Ghana. My husband stayed back with our other two daughters. I was finally going to bring Juliana home! The last six months of our second adoption had not gone at all how we expected. Not a surprise…now that we’re veterans! It was like a bad dream you couldn’t wake up from. Everything that was supposed to happen didn’t. Every promise that was made was broken. Every extra
documentation the Embassy asked for wasn’t enough.

Friends fasted. Neighbors cried. Government officials petitioned. We could not find favor in getting Juliana her Visa to come home. Thirteen weeks felt like thirteen years.

Until. God showed up.

He showed up in a very unexpected, powerful way through the organization I am writing this post for. Out of no where, I was reminded about an article I had read the previous winter. The article was in People Magazine about the founder of Project HOPEFUL. God prompted me to remember this article SO THAT I could find them at the right time. It seemed like God wanted to manifest his power and presence through the favor of this organization. And He did just that. Project HOPEFUL was used by the Lord to bring justice to a part of our adoption case that was unjust.

I was reminded again this past weekend of the responsibilities I have as a follower of Christ to grow up. To mature. The bible says in 1 Peter “like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, now that you have tasted that the Lord is good” [1 Peter 2:2-3]. Spiritual milk is supposed to be the experiences you have with God when He
shows up and makes himself known to you. Those moments you can’t deny when you got out of the way and it was all Him! Those moments that take your breath away and leave you asking “how did you just do that, Lord?”

To taste and see that the Lord is good, is drinking from that presence of God. And it leaves you wanting and craving more. To be told to crave spiritual milk, is actually a command to be addicted to God!

I’ve never experienced the real, tangible presence of God on a more consistent basis than I have with the global orphan care community. Through our two international adoptions, I’ve seen God’s power, protection, mercy and help so closely I could touch it. And the more I saw it, the more I wanted it. With Project HOPEFUL, I’ve seen babies literally given life saving surgeries in the last minute because God showed up. I’ve witnessed hundreds of complete strangers come
together and secure the funds to pay for an HIV+ woman to be transferred to a hospital that could save her life. I’ve stood in awe as I’ve watched brothers and sisters via social media sacrifice what they had to finalize the travel arrangements for a husband in Illinois to fly to Ukraine and help his weary wife bring home their newly adopted children.

Every time I’ve seen God show up on behalf of the orphan, I’ve found myself wanting more. Believing more.

Like when we find out a sibling group of three from Ethiopia needs a family and it has to happen soon because the oldest is getting close to aging out…in the past I would’ve gotten discouraged quickly thinking “alright, God, how are you going to do this?” But now! Now that I’ve seen and tasted that the Lord is good in the midst of orphan care…now I find myself saying “alright, God, here you go…show yourself off!”
And I want more. And more. And more.

Project HOPEFUL

 

 

 

So glad you’re home, sweet girl!

The views expressed in this article are those of the author alone and do not necessarily reflect the view of each and every staff member at Project HOPEFUL.  Thank you for following along through our Adoption Awareness Month series!  For more information or if you have specific questions about any post, please reach out to us at projecthopeful@projecthopeful.org

Adoption Is Not About You

A post from our staff member, Deb Steiner

There is an article circulating on Facebook right now entitled, “Marriage is not for you.”  As a single person, I read the title and thought, “You got that right.  Apparently.”  Ha!  But then I read the article and realized that the title was just one part of what this husband was saying.  Marriage is not for you . . . it’s for family and for your spouse.  It’s laying down SELF for another person (and family) in a total and complete way.  It’s not about you.  

November is adoption awareness month, and I’m just going to say it:  Adoption is not for you.

I am a huge advocate for adoption in those cases where a child is truly in need of a family (more on that in another post).  My brothers were adopted; my three children were adopted; I have supported countless friends in their adoptions.  It would be crazy to think I’m anything other than an {huge} adoption advocate.

And yet . . .

I don’t want you to adopt.  I don’t want you to adopt if you think it’s a fad.  I don’t want you to adopt if you are doing it for your ego or to receive accolades from people you do and don’t know.  I don’t want you to adopt if you have a savior complex.  I don’t want you to adopt if you are filling a God-sized hole in your heart.  I don’t want you to adopt if you intend to treat your children who were adopted differently than your biological children.  {This seems painfully obvious.}  I don’t want you to adopt if you think you have to.  I don’t want you to adopt if you can’t say now that it’s FOREVER.  Please, don’t adopt.

Over the last couple of years we have seen the disruption rate of adoptions continue to increase.  This saddens my heart. Children who are already hurt are getting hurt again.  By us, Church.  Let’s enter adoption with the same prayerful, submissive, heart-ready heart that we enter all big decisions as believers in Christ.  Let’s not be rash; let’s be thoughtful.  Let us pray and seek wisdom.  Let us worship God with our hearts, souls and minds.

Do I think there are times when disruption is warranted and even necessary?  Of course I do.  {I put that in bold to avert any hate mail.  Please.}  But I also think those situations are in the minority and not the norm.  As parents who are considering and then proceeding to adopt children from hard places, it is our responsibility to be ready for, and dare I say embrace, the “hard” that it brings.  Be ready for your young, post-institutional daughter to behave like a cling-on spider monkey to any nice grown up that comes her way.  Be ready for your teenagers to rage.  Be ready for your special-needs child to smear poop on the walls.  Be ready for extra doctor appointments, therapies, interventions, respite options, surgeries, IEPs, and hard, hard work.  Just be ready!

Because at the end of the day, adoption is not about you.  It’s about HIM.  His perfect plans for our lives and for the lives of the children who we step out in faith to love.  God’s plans for our families and for the children He will lovingly place into our arms whether by birth or through the miracle of adoption.

So, while adoption is not for you, it is beautiful and awesome and redemptive and amazing and I pray that you will consider it.

it’s not about me.  –Deb Steiner

The views expressed in this article are those of the author alone and do not necessarily reflect the view of each and every staff member at Project HOPEFUL.  Thank you for following along through our Adoption Awareness Month series!  For more information or if you have specific questions about any post, please reach out to us at projecthopeful@projecthopeful.org