Tag Archives: special needs adoption

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

About to Jump…

This post is by our Waiting Child Director, Jenni Johnston:

Our home is about to be open to foster kids. I keep going back and forth between being super excited and super depressed about the whole thing. I’m so excited to see what God has in store for our family. I’m excited to see the miracles and lives changed forever because we gave God our YES.  We didn’t give God our “super pumped up, I want to change the world!!” YES. We gave him our “fine, I guess… since things didn’t play out our way” YES.

2013 has been my nightmare.

Starting in 2011, I began begging my husband and God for a little girl in Russia, who had HIV. I had seen her picture and knew she was my daughter. It took 11 months of me crying, praying, and yelling for my husband to feel the same way. Those were some bad months!  I began to see my husband as the obstacle in my way rather than the love of my life. We ended up in marital counseling… Not my best moment. The problem was, I KNEW, without a doubt, she was my daughter. I no longer could focus on anything else.

March 2012: My husband came home and said God changed his mind. We started the process and got to meet our princess on November 26, 2012. It was AMAZING.

She and Josh bonded. She was so proud of her new father!

When it was time for us to leave we promised her we would be back for court in a couple months. She cried and said she would wait for us.

By the end of December there were rumors about US/Russian adoptions being banned. As the weeks passed it became a reality. I was a wreck! There was some time where we jumped through hoops making flight arrangements, getting more medical work done for court, paying waaaaayy too much money for last minute visas, thinking, and praying that we would get special treatment and get finish our adoption because we had met our child. We fought publicly, trying to get the American people to care.

http://www.youtube.com/watch?v=pizAaJEIt-Y

http://www.youtube.com/watch?v=h6DYr-q-ndY

I spent the early part of 2013 so stressed that I was physically sick. Then I moved on to being angry with God. After all, HE chose when to change Josh’s mind. Why did HE wait sooooo long? During those months, when I made it to church, I would stand with my arms crossed mocking HIM, taunting HIM, and throwing temper tantrums. All the while, knowing what HE wanted me to do next… FOSTER CARE.

I honestly don’t know how or when Josh actually agreed to fostering. It was always something we were going to do “in the future… down the road, when our kids were older, when we had a bigger house, more money and time”. But, I began taking steps to make it happen and it all just fell in to place.

We are now almost to the year mark of meeting our daughter. (We are still fighting for her.)  But now we are about to jump off a new cliff into the unknown. The scary waters where we are just saying, “Welcome!” We don’t know the age, gender, special need, or even how many. We don’t know how long they will stay or if they will be newest Johnston. We gave God our YES even though we have no clue what the heck HE is up to. We are heart broken and excited. Will I be able to handle more children on top of my three children? Can I handle more children from hard places while dealing with the one I already have and fighting for another one?

I don’t think God cares what YES you give him as long you give it.

 

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

Not Impressed.

A post from Tesney Davis:

Rescue those unjustly sentenced to die. Don’t hesitate to step in and help. If you say, “Hey, that’s none of my business.” Will that get you off the hook? God knows what you know. He’s not impressed with weak excuses. –Proverbs 24:11-12, NLT & The Message mash-up

Since God first wrecked our lives in a most excellent (and most difficult) way through adoption, I’ve gone back and forth, to and from extremes. At first I was all “full throttle ahead, everyone should adopt, and why aren’t they” with my approach.

Then I felt The Lord pressing me to be a little more graceful. I felt him nudging me to be quiet for a while, to listen, offer support, and to let him change hearts. I started learning more about adoption. I visited other countries and saw first-hand how family preservation is so much better IF it’s feasible. I got in touch with Kirill’s birth mom, learned his birth story from her perspective, and realized that family of origin is always the best option. But it isn’t always an available option. 
For Kirill, and most orphaned children with intensive special needs, adoption is probably the only solution. This is where my passion has been re-ignited over the past few months. I’ve felt God telling me it’s time to speak up again. Maybe a little more boldly than ever on behalf of orphaned children with special needs.
Orphaned children with special needs. Let’s talk about that. Let’s allow the reality of their situations to sink in for a moment. A child with special needs with a loving, nurturing family will have some obstacles to overcome. A child with special needswithout a family…well, their obstacles are almost insurmountable. Depending on the country, they are turned out onto the streets, placed in mental institutions, or turned over to nursing homes…obstacles that are impossible to overcome because they don’t have a voice or a family to advocate for them.
Now, think about this for a moment. God tells us repeatedly that the least of these are our responsibility as Jesus-followers. WE are the ones sentencing them to an unfair death by doing nothing.
It is our business. 
 
God is not impressed with weak excuses. 
 
Now, let’s all together say our excuses for not doing something out loud. I will start.
Our plate is full with Kirill. (Feel free to insert your own plate-filling child’s name).
 
Well, it is pretty full. I work. Greg works. We have two kids and one of them has intensive special needs. But the reality is I work primarily from home so I have 6 hours a day alone while my children are at school. We have an extra bedroom. We have food to spare. Honestly, there is room for more from us. Imagine telling Jesus your weak excuse. Would he be impressed? For us, it has become clear that cannot check “special needs adoption” off a list and rest on our laurels for the rest of our lives.
Frankly speaking, it’s not about us. When we shift our focus to the children who need families, and we make it about their needs, everything changes. Our excuses are LAME-O.
So today, on Orphan Sunday, let’s all do better. Let’s start examining excuses. Pray your excuses to God and see how he answers. Adoption is one answer…and for many it is the only answer. But there are eleventy billion other answers he may give you. The 90-year old home bound grandmother may be moved to pray for adopting families and their children. The tween aged crowd may organize a fundraiser for sponsoring a family preservation program. The young married couple may offer respite care for tired adoptive parents. He may tell you to mentor teen moms. We can probably all think of a family in our own community who needs help staying together. Why don’t we come alongside those families and support them instead of judging them? There is plenty we can all do together. Let’s just do something and stop with the excuses. God isn’t impressed.
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