Monday, February 21, 2011

They came 9 hours by train...

This couple came over 9 hours by train to attend the conference!!! They had a daughter who was 32 years old and had Down Syndrome!! They asked to speak and were highly motivating to all! Imagine having a daughter with Down Syndrome when the country was communist! Imagine not knowing what was wrong with her, and treating her like your other children! And imagine this, she learned to speak and read and write, and that was against all odds back then! Imagine finally meeeting with professionals and other parents and getting to tell your story! This couple was so thankful to God for the opportunity to encourage other families and for their special daughter that they sang a song of praise! Imagine that!!It was hard to keep back the tears and I found myself singing along with the group in Russian praising the Lord! At a conference...

Long overdue Conference Pictures

I've been so busy that I just realized I never did post some pictures and share information from the conference! We had somewhere around 175 people between the two days and that consisted of families, orphanage workers, doctors, educators, and volunteers. We barely had time to drink some water in between sessions as there were so many people with questions! I even missed the closing as I was speaking with a few parents who needed support during that time. Luckily, I did not miss the wonderful ladies from Vorzel presenting our team with hand made presents and thanks for all that we had done for them and the children, as I was presented mine individually earlier that day!

I presented on two different topics, the first topic Early Intervention Techniques with Children with Disabilities: What to do and How to Do it, to enhance your infant and child's development!, was presented both Friday night and Saturday morning.
I t was interesting the first night, learning to present with a translator. I had a wonderful young woman, Helen, who did an awesome job! I am very casual when I present, like to joke alot and since I was presenting the medical aspect of Down Syndrome and Cerebral Palsy, she didn't have alot of medical terms to translate; just alot of jokes. I had brought my puppet, Alexis for demonstration purposes which was perfect. So, thank you Slyvia for not letting me leave without her! Gwen Smith was so wonderful to share pictures and videos of her adorable little son Henry whose smiling face greeted people throughout the presentation! I was also fortunate to have downloaded some great videos on infant stimulation and some toddlers with DS signing and reading which really opened the eyes and ears of everyone. Not being able to find the signs in Russian I encouraged them all to start using some signs to have basic needs met.

My second topic was Therapeutic Strategies and Equipment for the Physically Limited Child and although I am not a physical or occupational therapist, as an Early Intervention Specialist I need to incorporate appropriate strategies for positioning and transitioning children. While in the orphanages, I noticed so many children with failure to thrive, and watched as the workers struggled to feed them. So I knew I had to address  this important issue, along with positioning to prevent contractures, etc. in the children with cerebral palsy. I was so happy I had Alexis to demonstrate the positions because it is such an important issue. My dear freind Sylvia had drawn illustrations of positioning do's and don'ts which hung around the room and I had a large packet of handouts as well. I hope that they walked away with a clearer understanding of how and why you handle the child with physical disabilities in specific ways. It was great to also have equipment which we then donated  to specific families and to the orphanage at Vorzel. 
My third sessions was for Questions and Answers and was packed! And in betweeen it all, I had scheduled appointments with individual children and families!

This little guy's parents were so proud of their son and worked really hard with him at home, They traveled hours to get to the conference and just wanted to know that their son was developing as he should! They are doing a great job with him, and I expect he'll be signing for 'eat, drink and diaper change' before you know it! It was so great to meet families who decided to keep their child rather than listen to the doctors and send them to the orphanages! More on the other presenters tomorrow!

Sunday, February 13, 2011

Here's Anya!

Anya couldn't wait to go back to playing with the toys that I gave her from her Mommy and Daddy! She was so excited by all the attention!

Sunday, February 6, 2011

The First International Conference on the Needs of Children with Disabilites

Please checkout this link to see the TV coverage of the conference! It is my understanding that it was seen by thousands in the former USSR and is a testimony to the ministry of Almaz Church and our Misison to minister to the orphans and children with special needs! This would not have happened without God who brought our group together! Please watch it all as there are many familiar faces from Vorzel as well as other orphanages that many of the children who have recently been adopted were from!В-Киеве-прошла-конференция-посвященная-служению-детям-с-ограниченными-возможностями

Groupa House 1 Vorzel

This is where it began for me! 19 months ago, I finally undestood what God wanted me to do with my life! Why he gave me my daughter Jillian, with six fingers, and why I spent my life helping children with disabilities and becoming a special education teacher. It was here that He wanted me! Here I met Pastor Sasha Skripak from Almaz Church, an evangelisist Pastor, and me a Roman Catholic, who showed me what I must do! It's here where Serving Special Orphans was found! Only God could be this creative to bring two people from the opposite sides of the world together for the same Mission! And out of that meeting, that day in June 2009, the First International Conference on the Needs of Children with Disabilities developed!!!!

                  Pastor Sasha Skripak, myself and the Doctors and ladies from Groupa House 1!
This Groupa houses the most severely involved children and I believe those who are about to be scheduled to be transferred as it was here that Leeza, Ivanna and Igor had been this summer. And here that little Volvo had been before being transferred! It has a small infirmary as well. And it has some of the most beautiful and most involved children. But the good news is, these children are leaving soon, not to a level 4 orphanage (institution) but to families who found them and want them.When I photographed these children and inquired about their availability back in 2009, I was told these were children that NOONE would want because they were too sick! Not all of the children have been 'cleared' for adoption and we need to pray that their parents release them before it is too late: Sasha, Dmitri, 'little Mikie', and Katya and 'little Stevie" before they end up like Volvo, transferred or like little Erra, who is with God in Heaven.
Little Mikie
Little Stevie
Plase pray that these children are released for adoption before it's too late  for them!

Misha needs a family so desperately! I have seen his laugh and I have seen him lying in his crib, alone, legs and hips in a cast looking so sad and distant. Please won't someone come forward and take this little boy home?
I was finally able to whisper to Igor (Casey) that he had a Mama and Papa coming for him!
I couldn't stop squeezing Timur as I told him his family would be there soon as well.
And this little guy got the news that his parents would be there the next week!! And the Malone's are currently there visiting with their LITTLE guy and should be bringing him home soon!

My own daughter would have been in this house with her vision delays, six fingers, seizures and significant developmental delays so these children have held a special place in my heart! And these woman have too because they have cared for the weakest and their house is in the poorest shape. Hopefully, this house will receive the facelift it needs through the Almaz Missions this summer and the children will all be with their families!!!
God Bless them all!!!

Vorzel Visit

It was wonderful to visit the children and workers at Vorzel, the orphanage where I first realized that God had been preparing me for His work with the children my entire life! Since the first time I was there approximately 19 months ago, I have known 19 children with special needs who have been adopted by famlies in America and France. I have been fortunate to have been able to follow the stories of some of these children and was happy to share updated information and photos of some of the children (with their parent's permission). A few of the children I had previously brought gifts and photos from their adoptive families and immediately was questioned about these children's adjustment in America. They were a bit disappointed I hadn't brought photos of more children and promised them that I would try to bring more next time. Yes, I plan on returning in June if it is God's plan for me.
I met with the Head Doctor, along with Dave, Jane and Anya and were given permission to go to all the Groupa Houses.I also was delighted to present little Miss Anya with gifts from her Forever Family and video her also! I am not sure who felt she had Moebius syndrome, but am sure she doesn't have it after seeing her giggles when tickled!! Having known this little one for 19 months, I am so happy that she has a family! There I was distressed to find that Mr. Bougdon, who had mastered walking with the aide of a walker I had brought there is June, no longer receives visits from his father. We need to pray for this little munchkin along with all the children!

In Groupa 5 ,I was able to see all the children whom I had spent so much time with and talk with some of the caregivers regarding the children who were recently adopted from there. I'm so happy to announce that Sasha and Dmitri, along with their sister Nadia are being adopted by a couple from AlmazChurch and will be living locally. Oh, how I fretted over this sibling group! This is the  mission of the Amaz Church; local families, members of their Church, adopting the children!

How delighted I was to see the room finished that the Almaz Mission groups was working on last June. Not only do the children have new walls and a new bathroom, but the staff finally have a bathroom of their own!And the playground is now fenced in! Now..if we can only raise the funds for the equipment this spring!

In Groupa House 2, I met with Tatiana and she allowed me to visit with and photograph  Baby Boo (AKA: Hamilton/Oliver for the his family and give him his gifts and family album. What a priviledge this was! He is just so precious!

So much more to share...

Saturday, February 5, 2011

The orphans in Znamenka sing their hearts out!

These orphans have spent their lives institutionalized in the Ukraine. Yet they can sing joyously! Remember them the next time you feel discouraged!


A short trip by taxi brought us to the orphanage known as Berizka where we met with Alexander the Head Doctor/Director. We shared with him the purpose of our mission and invited him and his staff to join us at the conference. After talking with Dr. Alexander for a while, he pulled out a picture of a child with Down Syndrome who had recently been adopted from there and asked if we had any current information on her. He remarked that he was so surprised that a family who already had one child with Down Syndrome would want another one. We have so much work to do to open the eyes of the professional as to the blessings these children bring into your life! And once again, I realized that what some have perceived as a 'cold attitude' towards the children and adoptive parents is really just their coping technique for 'letting go' of the children they have cared for since infancy! Wherever we went, the careworkers were anxious for news and pictures of 'their kids'. At Vorzel, where Anya, Dave and Jane's daughter with Down Syndrome was adopted from, they produced a picture of her when she was little and asked to pose for pictures with her, fixing her hair and clothes so she looked 'just right'.I am so glad that Pastor Sasha and Olya have ministered to the workers as well as the children!
Dr. Alexander, reported that the children of Berizka were ill but he would allow us to visit with them none the less. We were delighted to see a small group of children engaged in music and movement in a large room and other children in little classrooms, actively engaged in play with educational toys. These little faces were so precious and happy, despite their little 'drippy noses'! And we met with staff who were planning on attending the conference. It was nice to see that this orphanage was recently remodeled and that quality things were happening for the children. A previous group had provided them with some current books on Down Syndrome which they were hoping to have translated. When we suggested they just use the internet and a translator site for current information, we were shocked to find that their was NO COMPUTER and INTERNET access at the orphanage. We take for granted that we can get whatever information we need at our fingertips, yet, the HEAD DOCTOR had no internet access!!! And I guess then, the individual living outside the city would have no access either!

Wednesday, February 2, 2011

MIssion Trip and Conference Jan. 2011

I have so much to share about this trip that I needed time to process ( and get over the jetlag and exhauston)all the wonderful things that happened on this trip. I not only had a personal agenda, but also a group agenda and a conference to prepare for, so the week was extremely busy and the amazing thing, is that it all went off without a hitch!I arrived the day before the rest of our Mission group so that I could visit with Sasha and Olya Skripak, the Pastor and his wife from Almaz Church, the children and staff at Vorzel and friends whose child with DS was recently adopted and is in America. After visiting with the Skripak's we headed out to Vorzel where I met with Olga the head teacher and presented her with my favorite book 'Go Away Big Green Monster' which I had translated into Ukraine along with a activity related to the book for her to use with her groups. I thought this was a wonderful way to reach out and support her efforts to enhance the quality of the education for the children in her care. As a teacher, I did not see the quality of literacy/stories in the Ukraine as we have here in America and hope to change this by bringing good quality books (translated of course) for the orphanage children and staff.
That evening I was welcomed into the home of a family whom I had played a small role in helping their daughter with Down Syndrome find a family in America. I had previously 'blogged' about their situation in earlier posts. I was treated to a traditonal Ukrainian meal and was thankful that I could be there for them.

That night I met the rest of our Mission Team for the first time; Jane and Dave Daulton, from a Father's Heart, Inc., two amazing people who have adopted 7 children with Down Syndrome, Dr. Robert Rogan, a psychiatrist, Jan. B. a nurse, and Dr. Cindy Normandia, an Occupational Therapist.Together, with Sasha and Olya, we were committed to make a difference for the children with special needs and their families, both in the orphanages and at home.

The nest day, we rose early and boarded a train for Znamenka, a four hour ride. I have to admit, I was impressed with the train station and the train itself. Znamenka, is a Level Four Orpahange where many of the children from VOrzel could have been tranferred to, had they not been adopted. Ten years ago the Daulton's, had gone to Znamenka, and reported that then much of the building had no electricity or running water and they had returned on a few Humanitarian trips. They were so impressed to see the changes in the orphanage which had received help from a group in Belgium . I was delighted to see children actively engaged in therapies, educational and recreational activities. Yet I was saddened to see many children still lying in beds, blankets holding them down so they could not roll over, and no stimulation at all. Yes, the walls were brightly colored and some rooms had televisions, but some of these children spent years, lying in beds. Their bodies were stunted in growth and had we not seen adult teeth, sometimes two sets of teeth, in their mouths, or their names and birthdates on a card on the wall above them, we would have thought they toddler age or significantly younger then they really were. Two boys will forever be engraved in my heart. These boys were 27 and 24 years old, the age of my sons, yet their contorted bodies were the size of 6 year olds. They quivered and smiled as I stroked their hair; one clung to me as he 'softly cooed 'like a baby. To think that these boys were the ages of my sons and probally never left their beds; never went to school, never played with toys, never snowboarded, never went to the beach, never, never, never did anything my boys had done, left such a lump in my throat and a pain in my heart. Tatiana, the director, made so many positive changes for so many children, and Znamenka is now a 'model' orphanage, yet still the children suffer. Everywhere else in the orphanage, we saw happy children, smiling children, laughing and singing children. We met some older children, who made us wonder why they were ever placed there in the first place. One boy, made the most beautiful beaded flowers, a girl in a wheelchair did amazing embroidery, another drew pictures of a 'happy sunshine', a girl with neurofibromytosis, hid her face. Here in America, these young adults would be living on their own and gamefully employed and Sveta, would not have to hide her face as she would have received the medical treatment to remove the disfiguring growth from her face. She would not have to have live out her life in an institution hiding her face from the visitors and younger children!!What a shame, what a waste... yet fortunately for them, they know no other life so they are without bitterness and are content and even happy!

The Forgotten Children in Znamenka

Please look at these faces and remember them in your prayers. Help us to help them.