Category Archives: Waiting Kids

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

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

Host Families Needed: You can help!

“Without intervention, upon leaving the orphanage, 60% of girls will end up in prostitution, 70% of boys will be on the streets or in jail, and 15% will commit suicide within the first two years on their own. YOU can revolutionize the life of an abandoned child.”                                                             – New Horizons For Children
New Horizons Stat

Project HOPEFUL has been informed of a cutie that has an opportunity to be hosted. You have the opportunity to make a HUGE difference in the life of a child. Every child deserves to know what the love of a family feels like. We don’t have much time left to find Vlad a host family! Please inquire quickly if you are interested in showing this handsome guy the love of Jesus!

Ten year old Vladyslav is a very diligent student and his favorite subjects are math and PE. His director describes him as very active, polite and kind. He Vladthinks logically and likes to analize things. Very friendly and likes to socialize with friends. Vlad attends an art studio where he likes to draw, paint, and work with clay. On his free time he plays soccer and loves to read and watch cartoons. His greatest and most cherished dream – life! Vlad is HIV positive.

Vlad is being offered for hosting via New Horizons for Children (www.newhorizonsforchildren.org) for 5 weeks this summer anywhere in the U.S. Please contact Stacey at smaljian@newhorizonsforchildren.org for more information!

Adopting from Russia: The Davis Family Story

A Guest Post by Tesney Davis~

Two and a half years ago, my husband, Greg, and I began praying for God to do whatever he wanted with our lives. Adoption became something that he was showing us he wanted for our family. We began to pray about adopting a child with special needs. Greg and I have a lot of experience with children who have special needs. It seemed like a natural fit for our family. As we prayed, God opened our eyes to children with disabilities in orphanages across the ocean in Russia. We started our adoption journey of a child with Down Syndrome. We were given a referral for a child in Russia and awaited our invitation to go meet him.

Eight months later, as we neared the finish line of our adoption, one of the family members in Russia stepped forward to adopt the child for which we had been given a referral. We were devastated when we received the news that the child we had planned to bring into our family was no longer available for adoption. We grieved hard. Although heartbroken for our own loss, but God showed us that we were following him, and his ways are perfect. We knew we still wanted to adopt.

Shortly after losing our original referral, we received a new referral for a four-year-old boy with Down Syndrome named Kirill. We were more guarded with our emotions this time, but we had no doubts that we should commit to this child. We had to re-file a lot of our paperwork because of the change in referrals and regions of Russia, but our commitment to this child was not something we took lightly and we gladly did whatever it took to bring him into our family.

Then another piece of devastating news arrived from our adoption agency: a tragic story of an adoptive mother sending her child back to his country alone on a plane with a note pinned to his shirt had hit the media…and the child was from Russia. We were told this was not good and that our adoption could be delayed indefinitely. Adoptions in Russia came to a screeching halt. Kirill’s region stopped processing adoptions for eight long months. The judge refused to accept any Amercian adoption cases until an official treaty was signed between the United States and Russia.

Even though we wouldn’t be able to finalize the adoption in court until the treaty was signed, we were allowed to go visit Kirill and sign our official petition to adopt him in August 2010. We fell in love with him during our visits. This was our son.

During that time, we were told by our in-country facilitator that Kirill would be the first child from his region EVER to be adopted with Down Syndrome. A birth mother keeping her child with Down Syndrome is unheard of in this area of the world. Adoptions of children with Down Syndrome just don’t happen there, these children are literally hidden away from society in orphanages and mental institutions. As our process continued, it became apparent that Kirill would be a pioneer. If our adoption was approved, it would pave the way for other children with special needs to be adopted from this region.

Then, a miracle happened around Christmas and the judge in this region suddenly changed her mind and began processing American adoptions again. We were elated.  Could this be the light at the end of a very long tunnel? We were finally granted a court date-March 17, 2011. St. Patrick’s Day…a lucky day! Our son was coming home!

March 17th arrived, and as we sat in the courtroom and suffered through five agonizing hours of difficult questioning, we were not prepared for anything but an approval of our case by the judge. Two doctors, two social workers, and the Minister of Children’s Services all made very strong statements on our behalf. They fought for us and for our son, Kirill.

But when the ruling was read, the judge said, “Your application to adopt is rejected.” The basis given was that Kirill was “not socially adaptable” due to his “medical condition” and he was better off in an institution than in a home with a family. As the judge read her ruling, she stated several times that we were a good family, that we met all the criteria to adopt a child, but that she would not approve our adoption because Kirill had Down Syndrome and his “level of backwardness” made him unfit for any family. She told us that we could adopt another child, because legally our application had no problems according to Russian adoption law. She said she would approve our adoption for a “typical” child, but not this child. Why? The only reason? Because he has Down Syndrome. Even though we were approved by our home study agency and by the USCIS to adopt a child with special needs. It made no sense whatsoever. Denying a child a family because he has Down Syndrome is a violation of human rights at its most basic level!

We appealed to the Russian Supreme Court in Moscow. Within two months, we received our Supreme Court date to appeal our regional judge’s decision. May 24, 2011, we stood before a panel of three Supreme Court judges and argued our case. We were told by our lawyer prior to our hearing to expect the worst. The best case scenario was that they would allow us another hearing with a different judge in our region, but that they would not overturn our original judge’s ruling. That meant we would have to wait for yet another court date.

But God is still a God of miracles. As the prosecutor in our hearing stood and read his opinion, that we should not be allowed to adopt Kirill, my heart sank. I just knew it was the end for our hopes of Kirill becoming a part of our family. Then a miracle happened: the head judge stood up and read his ruling. “the decision of the regional judge is OVERTURNED by the Supreme Court of Russia”. I didn’t hear much after that except that Kirill’s name was legally changed to “Gregory Kirill Davis”. I was too overwhelmed with emotions as I thanked God and started hugging everyone in the courtroom. We had been told to keep our composure because the Russian Supreme Court was very formal and serious; emotional outbursts would be perceived as weakness and we couldn’t show our feelings. That went out the window when the ruling was read and we celebrated in a flurry of tears and thanks to God for the miracle he had just performed.

We have been home almost 19 months with our son. I still get overwhelmed with emotions when I think about the miracle God performed. Kirill is thriving. He weighed only 19 pounds at five years old when we arrived home in June 2011. Now, he weighs 45 pounds and has grown 19 inches. He had severe problems with his sight and hearing; both have been corrected. He had numerous infections and gastrointestinal parasites. Those have all been treated and he’s healthy and happy. He goes to school, has friends, and we love him with all of our hearts. We cannot imagine our family without him. He brings us great joy and we are so proud to call him our son!NewKirillBeforeAfter

We love the people of Russia and it breaks our hearts to hear of the recent move to ban adoptions of Russian orphans by U.S. citizens. I am a member of several adoption groups and have a large network of fellow adoptive parents who have adopted children from Russia. Every single family I know LOVE and CHERISH their children from Russia.

Although there have been cases of abuse and neglect of children adopted from Russia, this is an exceptionally rare occurrence. These people are not the norm and they should be punished for their crimes.

To deny children the opportunity to have a loving family is a violation of human rights and a horrible crime against humanity. Thousands of children will face a lifetime in an institution instead of loving families if this law is passed. Please stand with us and contact your government officials to voice your opposition to the ban on Russian adoptions by Americans.

Join Project HOPEFUL’s staff in signing this petition to oppose the ban on Russian adoptions HERE. To read more on this story see this BBC News story

An Important Message from our Founder, Carolyn Twietmeyer:

Friends!

I am sure you are tiring of the begging that has taken place over the last 8 weeks to VOTE FOR PROJECT HOPEFUL through the CULIVATE WINES big grant giveaway!! But, as we always say, “NO SHAME IN OUR GAME”.

I am SHAMELESSLY begging for you to VOTE and keep Project HOPEFUL in FIRST PLACE for this $50,000. LIFE GIVING, FAMILY MAKING, STIGMA SLAYING gift opportunity!! All we need to do is stay in first place for 4 more days and we WIN!! PLEASE SHARE this with YOUR friends and help us to continue EDUCATING, ENCOURAGING AND ENABLING people to adopt the most overlooked children for adoption in the world AND help HIV+ mothers KEEP their children and expand to bring LIFE to children in places like Guatemala, where treatment is currently unavailable!! Lock arms with us through the finish line!!!

THANK YOU FOR YOUR CONTINUED SUPPORT!!! We can’t finish this without you!

VOTE HERE: http://www.cultivatewines.com/give

All for ONE!
Carolyn

YOUR VOTE = LIFE!

2000 or Bust!

We are halfway through our 60 days in the running for a $50,000 grant from Cultivate Wines. We are so thankful for all of you who have been faithfully voting every day and keeping us in the lead!

Tomorrow, May 31st we are asking everyone to vote even if you haven’t voted any other day! Our goal is 2000 votes on that day. Lofty? You bet. But waiting children deserve no less! Will you please vote that day if none other (and we hope everyday) and spread the word on your FB page and by email of our vote on May 31? WE TRULY APPRECIATE IT.

“Do you know anyone who would like to take a boy like me…”

In Eastern European countries, at around age 16, orphans are forced to leave the orphanage system to enter the world with limited education, minimal support, and sometimes the just learned knowledge that they have HIV.  Within the first five years, almost 90% of these orphans end up in crime, prostitution, drug and alcohol addiction, or commit suicide.

In Russia 10% -15% of children who “age out”   commit suicide before age 18.  70% of the boys become hardened criminals.

We have four amazing boys on our list that could easily become statistics: Tim, Jack, Jonah, and Joshua. All of whom, have glowing reports. All are young men that want to make a difference in the world. All know the chances of them being adopted are slim. We have the chance to intervene and change the stories of these boys.

“Do you know anyone who would like to take a boy like me. I would really like for a visitor at least, because I am all alone and I have no one.” -Jack

When an adoptive parent came to the orphanage, Joshua asked why they were adopting such a small boy and if they would want a boy as big as him.  When a reporter asked him if he has a dream, he said “I have to find me a dad, mom, and a dog!”

According to a volunteer: “Jonah is a wonderful, just a wonderful boy!  He said that when he was younger he had a brother who was taken into an adoptive family but they left Jonah at the orphanage; then he added sadly, ‘but it’s good he has a family now.’   With great interest, he asked about family life. ‘Do you have a porch?’  ‘Do you go out socializing in the evenings?’  ‘Do you have a husband?’ (yes) ‘And he works?’ (yes) ‘That’s lucky!’”

Tim carefully and inquisitively peers into the faces of all incoming adults, hopeful that one of them will take him into their family.

Please consider becoming a FIG, or adopting one of our older boys. They have been waiting way too long for a family. Please help give them the childhood they desearve.

This article was written by Jenni Johnston, Waiting Child List Coordinator for Project HOPEFUL.  You can view children who are currently waiting for families by visiting http://www.projecthopeful.org/waiting-kids .