Join Angela, Axel, Abel and Asher as they welcome their new sibling home.

Saturday, January 11, 2014

Our Story: The Long Version

This post will be long. There are many new readers here who don't know the whole story and have asked how we got to where we are today. So here it is...all of it...grab a cup of joe and a comfy chair.
**************************

Dean and I met in 2003. By the time we were living together in 2004 we only had one kid living with us and that was Angela who has Down syndrome. When Angela was 8 years old her behavior started to take a nose-dive and we couldn't figure out what was going on. She was very difficult to manage and we were struggling. We sought out in-home behavioral services to help us learn how to parent this child who was suddenly so difficult. For a long time I questioned if the behavior was neurologically based because it came out of  nowhere and didn't seem to have a function. She wasn't frustrated. She wasn't trying to communicate anything. It just came about unprovoked. Very severe aggressive behavior. We wondered how we would manage her as a teenager or adult? Angela has a history of strokes as an infant so she was at significant risk of developing seizures. We had EEG's done several times to rule out seizure behavior but nothing ever showed up. She also started having nocturnal migraines which are really bad warning signs, and in April 2007 we were told she is a ticking time bomb.

It was during this time when we learned the plight of children with Down syndrome in other parts of the world. We were heartbroken to think of Angela born somewhere else; treated as an animal the way these children were. But Angela was so difficult. There was no way we could ever add to what we were already dealing with.

Then, when Angela was 12 years old she had a TIA while on the back of a horse. I brought her into her neurologists office immediately and she had one of her sudden, severe aggressive episodes while in the Neuro's office. "THAT is a seizure!" he said. She was started on the right seizure meds that very day (got her first pill in his office!) and, I kid you not, within 48 hours Angela was a different kid! For five years we had been walking through hell with her, and now we had our old, happy-go-lucky Angela back! This was right at the end of the school year, so her teachers didn't see effects. Angela has an extensive behavior plan in place at school so everyone knows how to manage her behavior there. The next fall, after the first day of school,  her teacher called me, "Who is this kid you sent me? This is not the same kid I've had in my classroom the last 3 years!!"

Within a few months I was ready. I wanted to adopt. Dean was not. In fact, he wanted nothing to do with it. I would read to him from adoptive family blogs about what was happening to "our kids" on the other side of the world and he would ask me, "Why do you read that stuff? Why would you want to read something so sad? I don't want to know about it." Finally I gave up. "God, I know we're meant to adopt but its not my job to change his heart. Thats something only you can do, and so I'll let it rest." I stopped talking about it. I kept praying about it.

In the fall of 2009 someone I knew - who was herself a representative of Reece's Rainbow - was working on her Bulgarian adoption. She jokingly asked if anyone wanted to go along with her to help bring two boys home. I emailed her, "I know you were kind of joking, but I would absolutely go with you!"

And so it was planned. Then at some point we added a side-trip to Serbia to an institution she had connections to at the time. Our trip finally rolled around in April 2010. Dean was irritated I was going on this trip. He would be home alone with Angela, and he didn't feel very capable of being a  single parent of a teenage girl for 10 days. He dropped me off at the airport saying "Don't even think of falling in love with some kid! We are NOT adopting!" And while on that trip Dean learned how to do pony tails, and lots of other girl related things he never imagined he would ever do.

During that visit we were introduced to many kids. Among them was a girl who was 10 years old with Apert syndrome and a 10 year old boy with Down syndrome who was living in foster care. The girl needed a family, and fast. I was blogging about her, and Dean was reading the blogs. Finally, after about Day 4, Dean asked me over skype, "So how do we get that girl out of there?"

And that was it. I told the facilitator, "The moment I get home, we're starting our homestudy."

And that's when I started this blog. We called the girl "ianna" (I use a lower case i because the font on this blog it's hard to see it starts with an i) we named the blog after her and we started working to bring her home. Only there were problems. And it was during that process when we got the first hints of corruption that lurks in international adoption. As it turned out, ianna was never eligible for adoption. Her parental rights were still intact. By this point we were convinced that adopting a child with Down syndrome was absolutely the right thing for us to do. We decided to move forward and adopt the 10 year old boy with Down syndrome. His name was Djordje, and he was the tiniest 10 year old I had every seen.

In December 2010 I traveled to Kragujevac Serbia to get our son!

Finally, Djordje Axel joined our family. Oh how fun was this little guy!!


We were happy. Very happy!

This is not to say that Axel was an "easy" kid. While he joined our family relatively seamlessly, there was a lot of institutional behavior that  needed to be dealt with. His foster family had taught him some great skills in the area of independence, but the behavior had yet to be dealt with. And deal we did. Step by step. My good friend once referred to parenting adoptive children to a game of "Whack a mole". The moment you deal with one issue, another quickly pops up, and sometimes there are more than one at a time!

The only problem was the fact Axel was hiding a medical surprise for us. Just a few weeks home he was diagnosed with AAI, and he was immediately fitted with a neck brace to be worn 24/7. The orthopedic people came to the house that night to fit him. Angela felt terrible for him.



While the adoption itself was very smooth, I found myself thrown head first into a ring of adoption corruption that would eventually become a bit of an international legal mess. The US based non-profit grant funding organization - Reece's Rainbow - turned their back on us because we refused to ignore the corruption. The adoption community connected to them turned their back on us for the most part, and we were quickly ostracized from all the online groups associated with them. In February 2011 we were notified by the Serbian government that an official investigation had started. They requested all electronic and paper correspondence between us and the facilitator, as well as contracts we had signed between Reece's Rainbow an the adoption agency we had been forced to use at the time.

In May 2011 I returned to Serbia to give a deposition to the Serbian government about the case as they prepared to press charges agains the facilitator. Eventually she was removed from her position as pediatrician in the institution and was told she could have nothing further to do with adoptions. (to this day she has still not gone to trial, but that is not surprising considering the speed at which the legal process  moves in Serbia! I was told she faces charges if profiting off adoptions by taking advantage of her role as a state employee, as well as child trafficking) The results of that meeting were posted on my other blog.

Since Serbia was working so hard to clean up the adoption related corruption, Dean and I decided we were ready to adopt again. So, on that trip in May I hand delivered our updated homestudy hoping to travel again in the fall. When the meeting was done I flew home to pack up the family again and move us to Philadelphia for a week where Axel underwent cervical spinal fusion. He would spend the next four months in a full halo followed by several more weeks back in a neck brace.

Which really didn't hold him back at all!



In September 2011, with Axel out of his halo and back in school,  the ministry sent me a list of children who met our criteria. We narrowed it down to two: one boy, one girl. Oh choosing is SO HARD! You know the child you turn away is going to be left wasting his or her life away! We asked for more info on the kids and learned the girl was not yet walking. Dean and I are not young and carrying a child or dealing with a stroller all the time didn't really appeal to either of us. We chose the boy. Unfortunately because we had spoken out about the problems we faced with Reece's Rainbow we had lost the support of the adoption community. We were lucky that this adoption was very inexpensive. Most of it was covered by our tax refund and I was able to fundraise the last couple thousand dollars we needed.

In December 2011, Lazar Asher joined our family!

Asher was so tiny! At 9 years old he was the size of a two year old...maybe. He was *barely* walking and could not eat solid foods. He was basically a 6 month old baby who could toddle-walk. Only he was 9.

But he was adorable, and we loved him.

One year later, in September 2012, we inquired again about any children who met our criteria. We were open to a boy or girl, but preferred a girl. There were only two children who met our criteria: one boy, one girl. The girl did not have Down syndrome, instead had just general delays. For us, that was a bit too vague. We didn't feel prepared to parent a child with so many unknowns. To us, Down syndrome is what we know. We can, for the most part, see what is "institutional behavior" and what is "Down syndrome" related behavior. Down syndrome feels safe to us. We understand it. Its is our normal. By this point we knew the children we choose are those nobody else wants. The hard kids. The kids with years and years of institutional baggage. We chose the boy.

We received our first picture of him on Christmas Eve, 2012.


Dean's first words were, "I see trouble in that grin!"

Dean is very wise.

We spent the next few months struggling to raise the last of the funds we needed. We had our tax return, but had to raise around $4,000. It took us months to raise it since our name had been turned to mud in the adoption community. People were really angry we had spoken up against Reece's Rainbow, not only about their involvement in Serbian adoptions, but in the adoptions of friends who had adopted from other countries. Except for a small cluster group who had similar experiences,  everyone else refused to believe it was possible for this organization to do anything wrong. Thankfully we had the support of Project Hopeful who helped us some, and we did a couple give aways here on the blog.

Finally April 2013 we traveled to meet our boy! At our ministry meeting the head psychologist from the institution was very honest, "This is a very difficult boy." (Later we learned the ministry had never presented his file to another family because they didn't feel anyone was capable of managing his very difficult behavior.) Dean and I exchanged looks. We knew "difficult". Because of years working with awesome behavior specialists who had helped us learn to manage Angela, we felt like we had a lot of tools in our belt, not to mention our experiences with Axel and Asher. We were ready for Abel! We went from the ministry office to the institution just a few blocks away to meet him.

We were in for a rough time of it. 

At 10 years old, Abel had spent more time in an institution than any of our boys. He had so many survival skills that he used, none of which were very pleasant. He was aggressive toward others, destructive (throwing large pieces of furniture!) and extremely hyperactive. Every time we visited we came up with a goal for the visit, "Walk around courtyard holding my hand the whole time." Or "Not getting kicked/hit/bit/pushed/hair pulled." One day, as we entered the institution, we stopped in the doorway and said a quick prayer. "Lord please help us see things from his perspective. Help us know how to help him." That was our breakthrough day. More good things happened on that visit than on any other day. Also, the officials agreed with us that our time in country was very short, and that we needed to take him from the institution as soon as possible in order to change his behavior so we could actually take him through airports. He was like a wild animal!

We took him for a weekend, and on Monday, when we brought him back, the staff could not get over the difference. It was decided we should keep him, and so we did. Thus began the education of Abel!

We got Abel home. That was a major feat! He actually did quite well with the travel. He was quick to get into the routine of life in the house, and was quite quick to learn our limits and behavioral expectations. Although he displayed by far the most challenging post-institutional behavior we'd dealt with until this point, we knew what we were doing. That doesn't mean we don't ever get frustrated, or that he is perfect, but we didn't feel lost. We meet each challenging behavior with intention, and Abel responds predictably. I can say Abel is awesome for me. He is smart, he is helpful, he knows right from wrong. He is our son, and he belongs.

In September 2013 we inquired with the Serbian ministry about a girl. Were there any who met our criteria? If so, we planned to not travel until fall 2014. We weren't just told "no". We were told "not ever." Like many countries, most people in Serbia cannot imagine having four children, much less four children with significant special needs. Although we know the ministry is very supportive of our family, and they love the updates we send them about the kids, they just couldn't imagine that we function like a normal family. Surely we were similar to a small institution having four kids with Down syndrome. No. We were done adopting from Serbia.

And so we thought we were done completely. We couldn't afford to adopt from any other countries that we qualified for, and honestly couldn't justify spending $20K on an adoption when our Serbian adoptions had been significantly less. This was it. This was our family.

But I won't lie. I haven't felt "done". I knew there was supposed to be a girl here. We tossed around the idea of licensing for foster care, perhaps adopting through the US system. Nothing seemed right.

Then, in mid December, we exchanged a series of emails with the Serbian ministry. There was a girl who fit our profile who had recently been added to the registry. A child nobody would want, extremely unlikely to have a family come for her. We would be the perfect family for her. On Christmas Eve, we were told yes. We sat on the info for a week. Discussing. Should we/shouldn't we? There were several things that happened over that week that told us it was "right". We told the ministry "Yes!"

There was one small glitch. On April 1st Serbia will officially be part of the Hague Intercountry Adoption Agreement. This would cause the cost of adopting from Serbia to skyrocket to over $25,000!!! We needed to have our dossier to them prior to this date. Ok, no problem. Oh but there is! Many of our dossier documents are still good, which keeps some of our costs down. But there's a rush...we needed to have our dossier in Serbia long before that April 1st deadline (this is not the ministry setting this deadline. It is us looking at our own personal timeline which includes the kids' school schedules, Dean's work schedule, document expiration dates, etc.)

We find ourselves back to fundraising with a very short timeline. Like our other adoptions, it's hard to fundraise in an adoption community that has been told how terrible we are. People have been lied to and lead to believe crazy things, like that I've made death threats against the a organization director. ( If you're not part of the adoption community you're thinking this is craziness. You are correct!)  People who have spoken up have had unusual anonymous calls to child protection made against them, they have had anonymous reports made to USCIS (the government authority who approves international adoptions) stating that families have lied on their homestudies, etc, slowing down their adoptions and sometimes stopping them in their tracks. Nobody knows where these reports have come from, but they seem to happen an awful lot to those who have spoken up against Reece's Rainbow. We know if any such things happen to us where it has come from. Every time we start another adoption, every time we choose to speak up so others know that all rainbows are not good, we take the risk of being attacked.

We are eternally grateful for those who have stood behind us. You have helped us bring three amazing little boys into our family. You have supported us through the difficult times in our parenting journey. You have joined with us, as we once again, work to bring our last child home. A girl. A girl just as deserving of a family as your own children who you tuck into bed each night. And so, with a very short time frame, we are struggling to pull it all together. In the end, it will work out as it should. Only God knows exactly what lay on the path ahead of us. We're ready.


6 comments:

  1. Truly an inspiration! I can't wait to meet her when she gets home and I'm glad to donate to the cause.

    ReplyDelete
  2. I loved reading this-even though I read it before while following all yoi adoptions. One day when you release your book I'll make a plan to get it in SA. I really pray for God to bless your time and fundrasers ahead! Wonder if you plan on taking Axel along this time.

    ReplyDelete
  3. My internal (infernal) proofreader sez: wasn't Asher 7 when he came home? He is 9 NOW, right?

    ReplyDelete
  4. Have you thought about asking for donations of items to be raffled? I'm a crafter and quilter. I'd love to help.

    ReplyDelete
  5. Cindy, thank you for the offer! I do have one friend sending me some stuff. Can you contact me privately? deanleah at comcast.net

    ReplyDelete