Guest Post, Author at Cedars Story

Down Syndrome Adoption in Russia

November 8, 2018 by Guest Post 2 Comments

I would like to start this story by introducing myself and my family. My name is Lubov and I am 48 years old. I live together with my sister and 6 adopted children, 5 of which have DS. We live in the Saint Petersburg’s area in Russia. My sister and I both have birth children who are already working and living outside home.

Our story started in 2006 when I started to work in one of the St. Petersburg’s adoption centers for the children younger than 4 years old as a medical assistant. 3 Months later I have adopted a 1.6 years old boy, who looked a lot like my son at this age.

Within the 6 years that I was working there, I had seen many children being adopted, but babies with DS were never taken. From these adoption centers, babies with DS were further transferred to the orphanages for disabled children, where the living conditions are much more difficult that in the adoption centers and children are more likely to stay there forever.

I was always worried about these children and during the sleepless nights thinking about their lives and future. During the Soviet times, it was very common to leave your child with Down Syndrome after the birth in the hospital as people didn’t know anything about this condition and were afraid to fail, as well of being criticised by the public for having an “unhealthy child”. Of course, now the situation is much better and most of the children with DS grow up in the families. However, there are still many babies with DS in the adoption centers and orphanages but now there are many families who adopt them and give them the love they deserve.

Marina

I was looking at the websites of the adoption centers and In 2012 I found Marina, a girl with DS and made a decision to take her into our family. She was only 3.6 years old, was only 84 cm (33 inch) and almost couldn’t walk. Marina has easily adapted to her new home and family and started to go to the developmental preschool. Although due to the health problems she couldn’t attend preschool every day I have realized how much she loves other children and being a part of the group so I started to think about another baby.

Yana

One of my friends told me about a girl with DS that has been directly influenced by the new law of “Dima Yakovlev”. This law has prohibited foreigners to adopt children in Russia and one American family who came to meet Yana, didn’t manage to adopt because of this law. In December 2013 I took Yana into our home. She is very sweet and funny girl, although she had huge problems with tvision, because of this, she almost couldn’t walk. We had to do an operation and purchase special glasses. Yana started to feel much better, started to develop faster, walk and even run. Marina and Yana became very good friends and Marina started to teach Yana how to play and help her around. After awhile they became real sisters.

Sima

In 2014 the local adoption center has offered us to take another girl with DS who was only 7 months old and we couldn’t let her stay there. Both Marina and Yana very enthusiastically accepted her as a family member and were always trying to touch her and to play with her. After a few months, it has been identified that Sima has various somatic health problems and was developing with quite a big delay. Her situation needed special attention and treatment which only a family can provide.

Vladik

One of the orphanages for the children without disabilities was located next to our home and once when passing there I saw a boy with DS seating alone in the snow, other children were playing and not giving him any attention. I was very surprised, as usually children with DS stay in other institutions. On a few occasions during this winter, when going out, we had been going around this orphanage and saw this boy always seated alone. In the spring we caught his attention and he smiled at us. For the next few next days we were coming closer and calling him to come to the fence and talk to us, so after awhile he started to recognize us. We began to think about adoption, but the decision to adopt was not coming easy until we heard this boy’s story. He was living with his family until he was 4 years old, but in November 2014 his family had another “healthy” child and decided to give Vladik away, that is how he came to the orphanage. In September 2014 Vladik came to our home. He turned out to be very independent and serious boy who could do many things by himself and was trying very hard. I think for a long time he was very scared we would give him back so we changed so we would never walk close to this orphanage where he was located before.

Milana

Within the last years many children started to find families and adoption centres started to get closed as it was no need for so many anymore. Out local adoption centre was also closing and we were asked if we would want to take the last child – a girl with DS. We though that a house with 4 children has a place for the fifth one and she was the same age as Sima. This is how Milana became a part of our family in December 2016, which is less than a year now.
All of our children go to the institution for the early development wherein they are working with several teachers on early intervention programs. Unfortunately it is possible only once, sometimes twice a week as it takes us over 2 hours one way driving to get to school as we live outside the city. Also we have teachers coming to out home. Although next year our oldest children will need to go to the special school and right now we are working on the plan how to make it logistically happened as it is around 100km (63 Miles) from our home to this school.
Our children are very happy, all of them develop fast and make big steps forward and most importantly love each other and enjoy each other every minute of every day.

Luba and her sister, Vera, live in Russia with their 5 adopted children.

They were both born in Leningrad in soviet union times, (now St. Peterburg, Russia) where they have lived ever since. Luba has 2 birth children (a son who is 27 years old and a daughter who is 23 years old) Vera has a son who is 19 years old.

My sister’s life and mine are similar to many women in 90’s, not easy. Politically, we have experienced very hard times, monetary inflation, different wars and after revolutions’ instability. My husband and I had 2 children together, but during the 90’s it was hard to find a job and my husband went to look for a job in a different city. Besides finding a job, he has also established another family there. My sister had a similar story. A few years later my sister and I bought an apartment together and moved in. That is when the next, and most important chapter of our lives is, rearing our children.

You can follow Luba and Vera on instagram @stupnikofffamily

A birth diagnosis of Down Syndrome in Turkey

November 2, 2018 by Guest Post 3 Comments

Our daughter was very secretive from the moment of conception. My period had been late so I took a few pregnancy tests but none of them came out positive. I was very excited about the thought of being pregnant since we had just started trying. I went to the doctor and after my blood work came back negative my gynecologist offered me to take some hormones to help bring my period back but something told me not to take them.

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How a birth can affect Change- Down Syndrome in Africa

October 25, 2018 by Guest Post 6 Comments

I was pregnant with my second child at a very busy time in my life. I was home full-time with my then two-year-old daughter, in the middle of online graduate school, I had a bake shop, I was running marathons, and my husband was in his second year of family medicine residency. We were very excited to welcome our second child, but we assumed we could continue life at the same pace with a momentary pause to get used to life with two little ones. And then, I went into labor.

One perk of being married to a doctor is being able to have progress monitored at home. We finally decided to head to the hospital when I was nearing 6cm. By the time I was checked in and settled in my labor room, I was 8cm. I soon learned I was progressing too quickly for meds, so I’d have to continue without the epidural I so dearly wanted. After pushing for three hours, however, it was decided our baby would be born via c section. I knew the drill, since my daughter had also been born through c section. Though I was exhausted and in pain, I felt a powerful sense of peace. As I relaxed into my surroundings, I allowed my husband’s colleagues, our friends, to do their what they did so well. Moments later, my husband joyfully announced, “It’s a boy!” An image flashed through my mind of my husband and the son he had waited for. Tears sat at the corners of my eyes. A boy. Samuel Thomas Amani Olsen. And then I noticed the silence.

Instead of bringing me my little Samuel, as we had previously agreed would be done, the doctor took my son to the warming table where he was immediately surrounded by the medical team. I requested they step aside when they were able so I could have a first glance at my baby, but when they did, I saw a silent newborn, arms flopping to his sides. Sam soon began crying, and I asked my husband to bring him to me. Wrapped tightly in his new receiving blanket, a hat set sweetly over his blonde hair, my baby boy opened his eyes as I spoke his name. It was in that instant, the moment his bright blue eyes met mine, that I knew our world was about to change.

It was confirmed within the hour that our son did, indeed, have Down syndrome. I was allowed to hold him for one, sacred moment in the NICU before returning to my quiet room down the hall. I don’t remember many details of that night, but I do remember we made a list of calls to close friends and family. We had a strong mixture of emotions. There are two calls I remember making in the wee hours of that first night. One was to my dearest friend, Jessica, and the other was to my sister, Becky. I remember those calls so well because, upon hearing our Samuel’s diagnosis, both cried. Jessica cried with me over the change in expectations, the unknown path ahead, the fear of what the diagnosis meant. Becky cried with me in joy that Samuel had been chosen for our family. She had previously spent multiple years working in a group home for teenage boys with special needs who didn’t all come from loving families. Two of my dearest friends, crying with me for very different reasons, but both were so necessary for my heart.

Our little man spent two weeks in the NICU as he learned to eat and breathe on his own. During that time, my husband went through a time of grieving. We both knew this was a healthy part of accepting our “new normal” and I encouraged him to take the time he needed. Once Sam was home with us and we began to adjust to being a family of four, I began to grieve. It was in the quietest moments, while we were alone together, Samuel cuddled up against my chest, that my heart ached. I wasn’t sad he had an unexpected diagnosis. I knew we could navigate that road. Rather, I felt it was my fault for somehow not protecting him. I was his mother, he grew within me, and I could not keep him safe. I cried for his future, all the unknowns, the things he may never understand or never experience. I cried because I was scared I wouldn’t always be able to protect him from the cruelty of others. There were so many unknowns. In those moments, I leaned hard into my faith and cried to Jesus. It was then I was filled with tremendous hope for all that Sammy had ahead. That hope is what got me through our early days and years.

Our Samuel is now five years old. Five! I can’t believe the time has gone so quickly and that we’ve had the opportunity to learn so much from him. We now take life at a different pace. We don’t judge by what the world says we need to be or do. We enjoy little moments more than we ever did before having Sam in our lives. We laugh over his hilarious performances, we get crazy frustrated at his endless NOs and crossed arms, and we celebrate over every new skill he masters.

How to Help Your Child Drool Less

October 24, 2018 by Guest Post 1 Comment

When you have a little one with low muscle tone, they can often have troubles with oral motor control and drooling. What about when you want do discourage the excess watering of the mouth? Today our friend, Molly, a speech therapist from The Speech Teacher shares her sage wisdom to help do the trick and help your child drool less.

Drooling is a part of the little one’s world. We see and feel a lot of wet bibs and t-shirts, particularly during the teething phase! However, sometimes children drool too much and/or too often. If your tiny friend is excessively drooling, it’s time to check in on this behavior. It is always best to visit with the ENT first so that they can use their magic to assess all of the physical structures properly. I am also going to share my favorite tips & tricks for our drooly loves!

Let’s Keep It Closed

If our mouth is closed, we are most likely not drooling! Ensuring that your child has a closed mouth posture is crucial. A closed mouth posture means that your little one has closed lips and is breathing from the nose. Our noses are perfectly designed for filtering (thank you nose hairs), warming, moisturizing, and smelling the air we breathe. The nose is also equipped with mucus that captures and kills germs. Additionally, nose breathing ensures proper balance of O2 and CO2 levels in our bodies (mouth breathing usually leads to hyperventilation). Children who breathe from their mouth often snore at night, get sick more often, feel fatigued, can be inattentive, and are at risk for crooked teeth. Research has also linked mouth breathing with behavioral difficulties, learning deficits, and speech errors. Once you have spoken to the ENT and ensured that there are no physical factors interfering with your child’s ability to maintain a closed mouth posture, it is simply a matter of building a better habit!

Tools Do The Trick

Sweatbands

Wristbands are a great trick for little droolers. They should fit comfortably on their wrists and last for a good portion of the day. I like using sweatbands because your little one has more control in wiping their own mouth throughout the day. You may need to remind them when their chin is getting wet, however it shouldn’t take long for them to take the reigns! Additionally, we want our children to start to feel the difference between a dry chin and a wet chin. That is, if we allow their chins to be wet all day, they will become accustomed to that feeling. We want to keep the chin as dry as possible so that they can start to feel when it becomes wet.

Timers & Watches

Sometimes our friends need reminders to simply, “swallow” when saliva builds up. You don’t want to have a timer going off all day, so it’s best to pick a time when drool is usually heavy. Perhaps when you two are playing 1 on 1 for an hour or so you have the timer going off as a ‘swallow reminder.’ The amount of time depends on your little one so you will have to start with trial and error. Pick the time that is a few seconds before the drool starts to escape from the lips so that they have time to swallow successfully. If your child is old enough, you can use a timer stopwatch that they wear on their wrist as a reminder for themselves. The goal is that your child will start to swallow on his or her own without needing the timer because you are building the habit.

Straw Drinking

It is preferred to have your little one use a straw cup, and get rid of the sippy cups & pacifiers. Sippy cups and pacifiers prolong an immature sucking pattern that we want to move away from. Straws on the other hand promote better lip closure, drinking patterns, and tongue movement. The pattern we use when drinking from a straw is the same pattern we use to “catch” the saliva that drops from our mouth. I also like to use varying temperatures with straw cups. We want to increase our children’s awareness and icy cold water can do the trick!

Humming

Humming is a wonderfully quick & easy activity to do throughout the day. Humming provides a nice, closed mouth posture and the vibrations increase sensation and awareness! You can hum along to favorite songs or make silly sounds using humming noises. With older children you can play a guessing game where you take turns humming a song that the other tries to guess.

Wipe It Right

Yes, there is a preferred way to mop up drool. It is simple though, I promise. You want to start under the bottom lip and wipe up toward the top lip to help promote a closed mouth posture. That’s it!

Remember to Remind

I know it feels like I just gave you a lot of things to remember to remind your child to do. But it will be very worth it when the proper habits have been built and you see a dry mouth! I am a big fan of consistency because it makes a huge difference in the speed at which we accomplish our goals. The more consistent you are, the faster you will see lasting progress. You can use 1-2 key phrases that feel comfortable throughout the day. For example, you can use, “close lips” when you see your little one with an open mouth. You can try, “catch it” when saliva has built up on the lips but there is still time to suck it back and swallow. I also use, “lick your lips” for some children because it is an easier direction. You know your child best and can pick any phrase feels right for you. It is also a team effort so get siblings, family members, caregivers, teachers, and friends involved — we are all in this together!

Molly has just published her first book and has offered my readers a free copy! Sign up below for this awesome giveaway where we will select one lucky reader to receive a FREE copy. To enter simply drop your email address in below to join both the Cedar’s Story email list as well as Molly’s email list and your chance to win! This giveaway will be open from 9/24/2017 through 10/2/2017 so enter now.

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Molly is a New York City-based Speech Language Pathologist and Feeding Therapist. She is ASHA (American Speech and Hearing Association) Certified and trained in the SOS (Sequential Oral Sensory) Approach to Feeding. She received her Masters in Speech Language Pathology from Teacher’s College, Columbia University, and her Bachelors in Speech and Hearing Science from George Washington University. She currently works with the birth-5 population conducting evaluations & providing speech and feeding therapy in NYC. Molly provides therapy in the home as well as in a special needs preschool setting. You can find her on Instagram @thespeechteacher where she posts daily pops of knowledge and connect with her on her site as well as Facebook.

Erwin’s Story- Down Syndrome Diagnosis After Birth (Brazil)

October 8, 2018 by Guest Post Leave a Comment

My husband and I live in Rio de Janeiro, Brazil. We met in 2010, he is British and I am Brazilian. During my pregnancy, I was unable to get much done in the way of testing due to my insurance company. I wasn’t concerned, though; I was just looking forward to the birth of our son. After a labor which lasted the best part of three days and a very difficult birth, our son emerged purple and was immediately taken off to be woken up and bathed.