“We never put the disability first”

Why me? Where did I go wrong? How can I change things? What will people say? What should I do? These are the questions parents ask themselves when they find out they have a child with special needs. But how can they overcome the feelings of shame and guilt so that they can become supportive to their children?

We talked to several parents who have children with Down syndrome and discussed about parents’ shame and guilt with Ana Niculaeș, psychotherapist. 

Ludmila Voloșciuc heard about her child's syndrome right in the delivery room.

"I noticed the doctors being agitated and heard their whispers. I looked at Nicoleta and saw her eyes, so similar to those of our neighbour’s girl, whose parents preferred to keep her only in the backyard", the woman recounts. 

The first five days spent in the hospital for investigations were the hardest.

"When I was alone with her, I had the impression that she did not hear me and did not look at me. I didn't know that newborn babies don't react the way one-month-old children do. I cried for five days, and my husband told me to calm down, because there are other people with such children", Ludmila remembers.

Lack of knowledge made her suffer the most. "17 years ago, Down syndrome was almost unheard of," she adds. She was also afraid of what people would say, and what she would do if her child was rejected. "I felt guilty, as if I could not allow myself to accept this diagnosis. I didn't even apply for the group (disability degree) for almost two years, not because I didn't accept her as a child, but because I didn't accept the diagnosis", she admits. 

Even now, she says, when Nicoleta asks her why she was rejected, Ludmila does not know what to answer. It hurts her the most when another child asks their parents: "why is this girl so ugly?". "These moments are hard for parents," says Ludmila. 

"I learned to be more empathetic" 

Beatrice is the first and long-awaited child of Ghenadie Borcan, the co-founder of Prietena Mea NGO. When she was born Ghenadie was 23 years old. He found out about his daughter's diagnosis during the winter holidays.

"When I heard the verdict, I knew very little about this syndrome. And when you don't know you are limited in emotions and thoughts. I remember riding the trolleybus on the way home and searching on Google for answers", Ghenadie says.

For three months, day after day, he lived with guilt, but also with fear, because the information seemed too scattered. Then he read a lot, spent time with his child, was supported by his loved ones and understood that things are not as terrible as he imagined.

"We never put the disability first, and that makes things easier. Betty is first and foremost a child, with according needs. She taught me to be more empathetic. And the feeling of shame that the parent may feel at first is a two-sided emotion that can be very dangerous. Shame comes with a lot of anxiety, and it doesn't solve the problem. You must get as quick as possible through the questions phase, such as "why?", "why did it happen to me?". And if the parent feels that he cannot overcome this feeling, he must seek help, especially from a psychologist", states Ghenadie. 

"It’s not only a society problem" 

Ala Burlacu has a 7-year-old girl with Down syndrome, Marusica. She saw the first signs when she first held her.

"I started crying, then I told myself that I had to overcome this," Ala recalls. Acceptance, she says, took her half an hour.

"I asked myself: what will I change if I’ll only cry and refuse to accept my own child?". Shortly after the birth of her daughter, Ala Burlacu founded the Public Association "Sunshine". Today, more than 350 parents of children with Down syndrome from all over the country have joined the Association. 

"The problem is not only the society that looks down upon our children or offends them, but also us, the parents. If we can't accept our children and we see them as disabled, that's exactly how others will perceive them. This is what I say to the parents who come to us and whose first questions are: "why me and what can I do?". 

How parents overcome the shame 

Psychotherapist Ana Niculaeș says the feelings of guilt and shame, experienced by parents when they find out the child's diagnosis, is a natural reaction.

"Every parent wants their child to be the best, to be healthy and accepted by society. When this is not the case, the pain is much greater, especially for parents who want to assert themselves through their child", explains the specialist. 

Phases of emotional grief: 

• Denial - I don't want to accept this diagnosis 
• Anger - Why is this happening to me? 
• Negotiation - What could I have done differently? 
• Depression - I am sad and in pain 
• Acceptance - I need to move on 

When asked what the parents could do, when they find out their child's diagnosis, the psychotherapist states that it is necessary to experience the grief and all its stages. "So, they can come to accept the situation. A lot of times people think that accepting means agreeing, but it's not about that, it's about accepting that it's out of your control. You may not like the rain, but you accept that it is raining, because it is out of your control. This is exactly the case of the parents of children with special needs. It is very important that they go through these phases, as this will later make them much stronger if they’ll feel that society is harsh to their child", emphasizes the psychotherapist. 

What parents can do to overcome emotional grief: 

- talk to other parents who face the same problem; 

- try to understand how others have overcome such problems; 

- talk to relatives and friends who support you; 

- talk about your own fears to cope more easily with negative emotions; 

- think about the positive resources in your life: family, friends, other people who have supported you in difficult situations; 

- get involved in activities that bring you satisfaction; 

- although the child's future worries you, think about each problem separately, not all at once; 

- look for as much information as possible that could help you care for the child; 

- try to look at the situation you are facing as something that makes your family stronger and more united. 

This material is produced as part of the campaign "An inclusive world starts with me, with you, with us...", in partnership with A.O. Prietena mea, with the financial support of the Ministry for Economic Cooperation and Development of the Federal Republic of Germany through the German Development Bank (KfW).