When I start to worry about the future, I purposefully return to the present

How to approach children with autism? How their integration in Finland looks like and what kind of services are available for families with an autistic child? I discussed these topics with an inspirational Clara Vázquez. This blog is based on our interview and it’s divided in two separate articles. Today you have the opportunity to read the first part. What is important in the relationship between parent and child with special needs? Do cope better with the diagnosis of autism mothers or fathers? And why is it important that parents have to work on themselves?

I met Clara during the spring 2020, when both of us have started to volunteer in the NGO for immigrant women in Finland. I liked her immediately. Educated and optimistic woman with opinions that made me think. I also liked the way she approaches her children. Mostly her 11 years old son with autism. As she says: ”We try to have a full family life. The key is to accept this diagnosis and to understand what your child needs.” 

When Clara’s son was born, they had lived in Spain. She, a trained psychologist, was informed about some signs and symptoms of possible autism. Her son had a lot of difficulties from the day he was born. At that time she didn’t really make a link with autism, she just intuitively felt something is wrong with my kid: ”It’s obvious that children need a lot of sleep. This is the way their brain is properly developing. But my son slept very badly from the first months of his life. For the first time when he slept 4 hours in line, he was already almost one and half year old. It was terrible. Not only he was awake, but that whole time he was restless and he cried continuously. I couldn’t sleep, I lost a lot of weight, I didn’t have the energy for any reasonable conversations. I was devastated…” 

Her son, unlike some children with autism, was able to maintain eye contact with people, but he was really uncomfortable with the physical contact. He disliked hugs, nor other ways of touching. In time, when children’s speech is developing, her son repeated the same syllables or over again, without the end or change of intonation, f.e. syllable ma-ma-ma. But in Spain it wasn’t possible to get him tested, he needed to be older than 3 years. Clara says that the diagnosis of autism can be made much earlier and the time gained could be used for early intervention and needed therapies for much younger children. And the sooner therapies start, the better results can be expected. 

”Because doctors didn’t want to start the diagnostic process and I couldn’ t obtain any free of charge therapies without their results and confirmations, I had to pay for private care. At that moment I was doing my specialization and I decided to do therapies with my son by myself.” , recalls Clara. 

Thanks to her profession, Clara has a lot of necessary theoretical knowledge, and of course as a mother she perceives situations much more complexly than only from the professional point of view. What is the most important in the relationship between a parent and a child (not only) with special needs?

1. Acceptance

”The first and the most important thing is acceptance of what is happening and how your child is. I know many parents who have difficulties accepting their child in a way he/she is. I don’t judge them, I understand it’s often very difficult. The more, we as parents, can accept our child, the better and deeper connection we can have together. For example, I respect what my son likes and what he likes to do. He likes to travel by metro and he likes elevators. Whenever I have time to be only with him, we travel by train to Helsinki, we use the metro and travel to the last station, or we go up and down with the lifts in the shopping mall. It’s our time, only me and him. It might sound easy, but it is sometimes difficult for parents to spend time with their child like this, because we, parents might have different expectations. In Spain for example it is expected that a boy will play football, he will run and spend time somewhere on the playground. If these expectations don’t meet the personality or preferences of your child, parents might have difficulties connecting with their children. If I don’t relive my expectations as a parent, most probably I will not enjoy going by lift up and down. For me this is acceptance. Accepting kid’s needs and adjusting to them. Doctors didn’t recommend me to support my son in these activities. They are worried, it will become an obsession. But I don’t think so. I feel like I spend time with my son in a way that suits him.”

2. To have enough information about the condition of your child, his/her difficulties and needs

Clara notes that she knows a lot of families, that for many different reasons, haven’t found out enough information about the diagnosis of their child and they rely only on selected information from doctors. But information means power – power to be better prepared for what is your child coming through and what he/she needs. To have enough information has a great impact on families also in other ways: ”I realized that well-being of families, who have information is much better, than well-being of families, who are uninformed. Situation of an informed family is better from the perspective of physical and mental health.”

3. Facilitation of your child’s life

”If I have a lot of things at home, it causes my son stress. Imagine it like this – syn wants to pick up something from the fridge. If the vegetable is mixed with other things, he gets angry, because he can’t see what he is looking for. So, if I know that this is the source of the frustration for my son, I try to do something about it. For example, I have a fridge in order and the space is precisely divided. Shelves in the fridge are numbered as floors in the elevator. If he asks where the juice is, I will tell him it’s on the second floor. Son will look immediately into the “second floor”, he will immediately notice juice and we will avoid searching, that would cause him stress. I have books in order in a bookshelf. My son doesn’t have a lot of stuff in his room, because he would be nervous. But you can’t facilitate your child’s life, if you don’t have enough information and if you don’t know your child and his/her needs. It’s all connected. All these three areas.” 

Clara is a neuropsychologist. I wanted to know if it was anyhow easier (because of her education) for her to accept the diagnosis of her child. “No, it wasn’t. My education and my profession helped me to obtain information. But acceptance is a more complex matter. We have to work on it. We have to forget our own expectations and we have to live in the present. My education has nothing to do with these. ”  

Is it possible to help parents who are dealing with the autism of their child? What can we do as friends or relatives for the family to keep moving forward and not to be trapped in the feelings of guilt, regret and bitterness?

“ What we can do is to be available, if, at some point, the family will be ready to move forward. And not to judge them. It is a long process to accept our children and it is strongly connected with our own childhood. How we were accepted by our parents? But this is for long term therapy. As friends, we can only show that we are here, ready if somebody decides to obtain help. If I want as a parent to accept my children, regardless of their special needs, I have to start from myself. Why can’t I accept my child? It is usually because our parents hadn’t fully accepted us. And we have to realize this. We have to cry it over, we have to talk about it and just then we will see much clearer, that we cannot accept our children, because we were cut short of it in our childhood. After that starts another part of work – first we have to accept ourselves and to love ourselves in the way we are. Just when we accept ourselves, we can accept our children.”

I know personally few families with children with autism and it occurs to me, that mothers usually cope better with the diagnosis than fathers. Clara pointed out, it is not like that: “It depends on personality. Maybe men talk less, maybe they can escape from this situation into work or into hobbies. We mothers may look like we are coping better with the situation because we spend more time with the child if we are at home and not in employment. But we can escape too. Even if we are in the same room with our child. Because it’s different to be present and connected with a child and just to share the common space. Yes, we are often the whole day with a child, but we only share space together. In fact, we are not connected with our child. So, it looks like the mother is the present one, but she is inwardly distant from her child. There are many ways to escape from reality – speaking in a very general way, men usually escape physically out of the family (e.g. working too much), while women usually are present in the family, but they escape more internally and pay attention to other things than their children. (e.g. neverending to-do list for what a mother needs to do at home).”

Clara is active on social networks, where she makes autism and life with autistic child visible. That’s why I see her also as an activist, who promotes that it is possible to have a happy life even if we have a child with autism: „I share here not only practical information on autism, but also our pictures. Maybe it encourages someone. I want to show other people that it is possible to have a great time with kids, that it is possible to live a happy life and also to have some time for myself and my hobbies. I had to learn to live in the present. Whenever I start to worry about my son’s future, I have to come back to the present. It’s normal to have worries. But, we don’t own the past and we don’t know what will come in the future. That’s why it is better to come back to now, to this particular moment and live in the present. Of course, sometimes I also have difficulties to do so, but I purposely come back to the present. It is not natural, it has to be learnt.”

Personally, I also realize that I have never worked so much on myself like I have been doing now – since I have been a mother. When I have the capacity, I try to understand why I do things in the way I’m doing them. Similarly to Clara, my own experience with therapy and my education, help me a lot in this process. But just that doesn’t make me a better mother. Being a good parent it’s a never ending learning process. 

Today we spoke more about practical recommendations for parents and about Clara’s experience of what is a more effective approach to the child with special needs. About Finnish social services, available support for families with an autistic child,  about guaranteeing the human rights of these children, especially the right to education, you can read more in the second part of this blog.