One child, one mother and one chromosome more

By 25/09/2019Blog

This story is told to us by Raya Tsvetanova – Senior Early Childhood Intervention Specialist,she works from 7 years with children and families in the program “Early child intervention”. Raya is part of the team of the Community Support Center “St.Sofia”  in Foundation “For our children” . From her practice she has reached the conclusion that the earlier children receive help and the sooner parents are supported in encouraging their child`s development the further in life children will go. Investing in the earliest years brings dividends throughout the human life.

 

We met again four years after we worked actively with Krasi`s family. How time flies…They had come to the Community Support Center “St. Sofia” to bring their extra clothes and toys, the mother wanted me to see how grown up Krasimir is, and how well he is developing. In my mind I went years back. This was one of my first cases in the program “Early childhood intervention”.

 

Kalina gives birth to the twins Krasimir and Milena in 2010. Out of nowhere comes the diagnose Down syndrome for her newborn boy. Most people say that in these cases life Is divided by “until” and “after”.

 

Not long after the birth of the children the father goes through a work accident and for a long time is attached to bed.  The family has a hard time financially and can`t look after their three children – the older child Stoyan and the twins. Kalina didn`t feel prepared to look after a child with special needs. And the doctors in the maternity ward advised her to abandon it. They told her he won`t develop correctly and can ruin their lives.  No one was there to encourage the mother. Full informational vacuum considering the care for a child with a Down syndrome. In that moment she desperately though “Where are you God?!”. She left the child…

 

Krasimir was raised in an institution until he was 3 years old. The mother`s heart , however, couldn`t stand the separation and Kalina decided to take her child from the social care home. She made a colossal regrading of her values. She read many articles and materials for people with Down syndrome, who become Olympian champions and restauranteur`s with their own business. She gathered information for different entertainment methods, specialists who can help him develop his potential… and so she reached us at the Community Support Center “St.Sofia”.

 

How did my first meeting with the child go? He climbed on me, scratched my face and plucked my hair several times. The mother told me: “He acts like this because he likes you”. I asked myself what would it be if he didn`t? He was like a beast. Later on, I realized he had been in an institution for 3 years. Three whole years! No one had taught him how to express his emotions adequately. That`s what he could do – pluck and bite.  He plucked cruelly his own hair. Small, weak…he could barely stand on his feet. He didn`t walk well.

 

But he was like a fury.The whole world was new to him and with great curiosity he studied it. On the children`s playground he would stop before every leaf and stone. The walk probably was a long one. Kalina had to explain what everything in this big unknown world is. She repeats something he must know a 100 times. I`ve admired her dedication and patience towards her children. The same way I admire mothers who take care with such big love for their children with special needs.

 

Then, on this meeting, Kalina let her tears down for the first and last time – she cried until all the gathered sorrow went out…”You feel like you`ve wronged the way – you`re flying for England but you land in Finland.”

 

“Actions are needed not words’…said one of our biggest poets and Kalina and I got to work.  We started stimulating the motive, sensors, playing and social activity. After a certain period of time the child would walk stably and the aggression and self-aggression was reduced the positive affective tone was predominate, he would make syllables. Krasi learned to climb and go down the staircase. He started feeding himself using utensils and drinking water from a glass. He expressed preferences towards musical toys. Great pleasure was from him to play the drums. That`s why once a week he would visit the musical therapy in the Community Support Center “St.Sofia”. He did routine actions by instruction. The first words appeared. He pronounced the word “bread” very good – probably because he liked eating…

 

The hardest was the moment in which we fought for him to visit a mass kindergarten. In the close to their apartment one he wasn`t accepted because our society still has prejudices for children with special needs. With a lot of actions and the lack of actions from the institution`s side he was accepted in one. Every child needs friends, love and to be a part of life in the social community. This is important for his intellectual and social growth.

 

At the beginning the teachers were prejudiced towards Krasi and his abilities. I did several meetings with the staff and explained that the children with special needs aren’t scary. They are like every other child regardless of some specialties in their development. I explained that with Krasi`s presence in the group children could be better, more tolerant and to learn to accept the differences. Regardless of the difficulties the teacher step by step managed to help the child adapt successfully in the environment and encouraged his success. Kalina became calmer because of the shown compassion and interest towards her family.

 

Now I watched Krasimir….he had become taller, he had grown…there was confidence in his eyes …the mother proudly demonstrated his new skills – he can now count to 10, write the numbers to 10, when asked he shows on a picture and pronounces the letter from the alphabet.

 

Why is this story special to me? Because I had the privilege to be a part of it as a “Early intervention” specialist with the knowledge I have and the desire to help. And because once again I convince myself in that – a mother`s love can make wonders…

 

On the way out I asked Kalina “How are you living?” She answered: “The extra chromosome exists we are learning to live with it and I think we manage to live happily.”

 

Our “Early intervention” services how good intentions are made possible so that children with special are an active part of society, to have a happy and complete life and not stay in their homes or hidden in institutions.

 

According to statistics in the world from 700 children 1 is born with the Down syndrome. The Down syndrome is a genetic condition which is determined by the existence of one extra chromosome in one or in several cells. Instead of having two copies of the twenty first chromosome people with Down syndrome have three. In a result of that they have total 47 chromosome in their cells instead of the normal 46.Because of the chromosomes and the genetic material they carry play key role in determining the character that extra chromosome impacts their whole life. They have a specific outlook, some typical health problems and their physical and psychological development is slowed down in comparasment with their coevals.

 

One of the typical things for children with Down syndrome is the lowered muscle tonus – hypotonia. The development in the muscle system builds the base allowing the child to move around, to explore the surrounding world and is connected to all others development areas. Raised in institutions children are falling behind their development, become passive and lack motivation.

 

Raya Tsvetanova – Senior Early Childhood Intervention Specialist

Community Support Center “St.Sofia”