‘The turning point is to accept your child as it is’

‘Now that you ask me, I start thinking. Perhaps from around a year and a half I haven’t asked myself: Why does all this happen to me?’. Around this time came the moment when, thanks to the help of specialists and psychologists, Veselina starts to understand her son better, to accept him, to go beyond what she thinks a child should be capable of doing and beyond her ideas of what makes a child happy. She starts to notice his steps of progress more, to appreciate them irrespective of the fact that for most parents with ‘normal’ children these steps may appear minimal, unnoticeable.

Veselina is the mother of Ivaylo, a keen and active boy who is almost six years old. Besides being a kid who likes to ‘drink juice, eat apples, sand, water, snow ...’ (as Veselina describes him with a smile on her face), who has a scoter and plays with the kids in the kindergarten, Ivaylo also has a diagnosis—a general developmental disorder. And problems characteristic of the autism spectrum.

Today Veselina says that she considers herself happy. Or at least as happy as every other person. She is calm, confident in herself and her child. However, it took time to get to this state. And support. At least a year passed before Veselina could get back on her feet. ‘It was extremely painful to hear and accept the facts. I was in low spirits for a year, shut off from the world. I was asking myself why this was happening to my child exactly. Of course, I didn’t want it to be true. And understandably, there were moments of desperation. You think how he will never be like the other kids’, she remembers. However, when I realized and accepted this fact, I pulled myself together, it seems, Veselina adds.

‘After we started seeing a psychologist, we became more confident parents.' 

This was a huge support, it gave us an incredible start, gave us courage’, she recollects. She thinks that such support should be provided to every family with a child experiencing difficulties. For speech therapists and child specialists are easy to find but if the parents don’t stay beside their child and help them in the best way possible, nothing is going to happen, the young woman says.

‘We realized that whatever happens, we will never give up on our child. We will just do everything in our power to help him progress. And to make him happy. We realized that we could achieve this’, she adds.

According to her, the turning point was when she accepted her child as it was.

Without imposing on him her own expectations or the expectations of the people surrounding her. She accepted him ‘despite everything, despite everyone and despite what surround us in today’s world’. She stopped worrying when going out for a walk with her child, her stomach stopped churning with anxiety of what was going to happen outside, whether Ivaylo would get angry or ‘throw himself on the shop’s floor, how would the other people in the park react’. Because he is, after all, her child.

The young woman can’t give general advice on how to be a good and happy parent of a child experiencing difficulties and thinks that everyone has to find the mechanism to achieve this state on his own. ‘However, maybe you should stop caring about what the other people would say’, Veselina says.

According to her, parents often demand too much of their children. They see everything through the prism of their own ideas of progress and happiness. We need to accept our children with their strengths and weaknesses in order to understand them. If you focus too much on the negative things in your child or your life, you will never be contented, she says.

‘I want Ivcho to be able to do as the other kids do. However, every kid is different. Thus I started noticing Ivi’s positive sides—he is loving, caring, he likes to be hugged, to laugh, he is a good and cheerful boy. Even sometimes, when I see how the “normal” kids behave towards their parents, how spoilt they are, how they argue ... I am glad we don’t have problems of such magnitude’, Veselina says, laughing.

She explains that, at least for now, it is easier for her to look at things day by day. When she starts thinking about the future, she becomes a little disheartened. ‘For example, when I think about him starting school, whether he’ll start it now or we’ll have to postpone it, how he’ll get on, what the future will be. As for myself, I have decided to plan and look at things day by day and notice the everyday steps’, Veselina adds. For example, she proudly recalls how she taught Ivcho to ride a scooter recently. At first, I thought it was completely impossible, but with a lot of stimulation, work with specialists, work at home and encouragement we finally made it happen, she adds. This could look easy for a two-year-old child but it is a great progress for us, the young woman adds. She says that her phone is full of happy moments—videos and photos from similar stages of progress. He sees my happiness, understands it and is happy too, Veselina says.

There is another reason for Veselina`s happiness, calmness and confidence, as she herself points out—Veselina has a job. ‘The fact that I am more than just Ivo’s mother, personal driver and therapist, that I can find the time to go to work, to take care of myself gives me comfort, gives me confidence and, in return, makes me a better parent’, she says.

There are rules in the household: things don’t get slighted or compromised just because Ivcho is experiencing some difficulties. I have certain requirements of him – that he washes himself, helps, takes his clothes to the laundry bin, etc., Veselina says. In the mornings she takes some time for herself in order to dress up and put on some makeup. ‘Perhaps I am the pushier one, I made it clear that he needs to consider the fact that I have needs as well and I made him wait. And little by little he learned’, she recalls.

In all other respects, their family is no different than many others although parents often worry about taking children outside their familiar surroundings, both because they fear how this will affect them and because of the other people, such fears don’t stop Veselina and her son’s father. Last summer Ivaylo went to the seaside with his mum and dad; he was extremely happy there and had a great time. At the weekend he goes to the mountainside, spends time in the nature, visits caves, museums and many other places. Veselina isn’t sure to what extent her son realizes what happens on those trips but she is certain that he gains from them in his own way and the fact that they go out of their comfort zone really matters. In order to live like everybody else. And so that the three of them can be together—she, her son and his father. Even thought Veselina doesn’t live with Ivcho’s father any more—they have separated. This, however, doesn’t stop them from being beside their child as good and supporting parents.

‘We, like many others, have been scared, riddled with fears but a person should always try and hope for the best. We don’t want our kid to miss on things’, she says. She is certain that many parents restrict their children out of fear—fear how their children will react, how the other people will respond. And mostly out of fear to be pitied. ‘I know this because I have been through it. This is why I want to tell my story, so that other people can see that the thought of having a child with disabilities isn’t so scary. Yes, it may be tough, it may seem impossible, you may feel that your world has come to an end and what not. However, there is light. If we stop blaming ourselves, if we stop blaming our child, the physicians, our family, and if we stop being afraid of the other people and their opinions’, the young woman says.

When asked what advice she would give to parents who have recently discovered that their child is experiencing some difficulties, Veselina says:

‘To be very confident, to know that they have the necessary power and capabilities within themselves, to keep their chins up irrespective of everything and everyone and to fight for their children with all their strength. Even to fight the institutions, to fight everyone.’

She doesn’t deny the fact that every day is a fight, a fight for every single thing, even the most basic ones like stopping your five-year-old child from wearing diapers just because it is easier for the women who take care of him.

However, this fight matters. In the seemingly small everyday steps forward.