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In under 5 mortality rate was recorded in the CEECIS region from 1990 to 2011.
The mother of a sunny child: the world of bright colors and smiles
Shahnoza Ikramova is a strong mother and head of a specialized non-governmental educational organization “Umnichka”, which provides assistance to the families with children with Down Syndrome. She shares her experience of being a parent to a special child and all the stages she had to go through.
Never give up and believe in your children
“When my son Rustam was born, people at the maternity ward made a big fuss, and my heart sank sensing something is wrong. Sometime later, I was told about my baby’s diagnosis: Down syndrome. I was immediately offered an option of sending him to an institution. I always wonder why in our country there is such an easy procedure of sending away the child, and such a complicated procedure of accepting your own child.
What helped me to find strength to do the right thing was definitely my family support, because I had absolutely no idea about what Down syndrome is and how people live with it. I underwent all the stages of parental depression - stress, denial, seeing no future and most of it was due to the lack of information. I knew English and Russian and I would browse all over the internet in search for some information, opportunities and recommendations on how to compose our individual development programme. I was lucky that I managed to find the right information. I understood that with the right approach I can get my child to learn basic skills and live in the society.
Old Soviet-time description of children with Down Syndrome states they can’t walk, play, learn, or understand you, and even don’t recognize their parents. However, day by day I realized that it was wrong. Rustam has always been an active boy, keen to learn new things and do more you expect from him. Surprisingly, he taught us many things. He taught us to be softer and kinder. He changed our life focus from ordinary things like making career, earning money to the wonderful world full of love, joy and thankfulness for what we have.
All we need to do is spare our time, believe in our kids and train them, play with them, pay them the most of our attention and love.”
Parents community: inspiring each other
“A great specialist at the National Screening Center, Antonina Pak, helped us to create the parent support group. She knew it is important for the parents of special children to know they are not alone, and to share knowledge. So she connected us with each other. Now there are parents who have seen positive results and who even have managed to get their kids in regular kindergartens.
Environment affects a child’s development. Children learn from those who surround them. From my experience I can state one simple truth: inclusion starts in the family. The family should accept a child first and then start working on his or her development right away. In the long run the child is like an indicator of parents’ attitude. It is hard but once you open your heart and soul to the special kids, you will understand why they are called “sunny kids”. It is hard to stay indifferent to their constant bright smiles.
To get back to the parent support group or parent community as we call it, I can say that we are evolving altogether. We gather once a month and share every single piece of information we find. When one of us sees a parent with a sunny kid in the street, we go up and talk to them and invite them in the group. Our first gatherings were all about complaining to each other about our problems, crying on each other’s shoulders and feeling better – exactly like after a visit to a psychologist. Then we shared the development programs, methodologies and results that inspired us all. Now we go beyond dealing with diagnosis only. We help each other with household or family matters - with basically anything. We communicate every day through a Telegram group, share videos and photos of our kids and some moms even write poems.
This year parents organized an event for the International Day of People with Down Syndrome. We had a similar one last year with children’s fashion show, concert program, presentations and treats. It’s always celebrated in a high spirit and we have many people - parents and their friends - helping us with its organization.”
“Umnichka” development Center for children with Down Syndrome
“In 2012, I felt that I would not find a Development Center more appropriate for my child. Knowing what is the best for him I came up with the idea of “Umnichka”. Today we have more than 200 children with Down Syndrome visiting this Center. . The Center is open for all children from birth and up to the age of 7-8. Unfortunately, it is not free, because we have to sustain ourselves. But, we have a flexible discount system.
We are about to open the fourth branch of our Child Development Center. I also want to start teenage peer groups to help the kids with their school progress and even further, creating a possibility to gain some skills for them to be able to work when they grow up.”
“Rustam is 10 years old now. He is a 3-grade student. He loves going to school. He likes reading, painting and playing with friends from the neighbourhood. He is a very intelligent boy. I am happy to be the mom of the boy with rich inner world who makes me a better person every day.”
Open your heart
“To all the parents like me, who have had to face this situation, I would send the following message: when you hear about the diagnosis of your child, it seems very scary, but don’t be afraid. Every person is unique. Our kids have just one more chromosome which makes them a little different. They will learn. Maybe later, but eventually they will. Believe in your kids, don’t try to make them who you want them to be. Invest in the development they need according to their potential. When you train them well, even their faces change and become less and less typical of children with Down Syndrome.
Life of parents like us can be wonderful. I am thankful for my child for being born as he is. With him I opened a completely different world of endless trust, joy, love and acceptance. Open your heart to that and you will see there is nothing to be afraid of.”