Barbara Barwacz-Mikuła, President of the “I’m For” Association for Persons with Autism and Their Families, shares tips for parents.
When someone asks me if parents can or should be their own children’s therapists, I answer, ‘Parents should first and foremost be parents: that’s their main role and calling’. However, we – the parents – have a great advantage over every professional therapist in that we love our daughters and sons, and our parental instinct usually allows us to choose what’s best for our children. While you should never forget about therapy, it’s the closeness, the feeling of security and the familial bonds that make up an invaluable asset, which gives you a considerable capital for a good future – says Barbara Barwacz-Mikuła, mother of Ola, who has Asperger syndrome, and President of the ‘I’m FOR’ Association for Persons with Autism and Their Families.
When children are born, they don’t come with an instruction manual. You can prepare for the birth by buying all the essentials and reading advice books, but when the long-awaited moment comes, the mystery remains unsolved. Every day and every night bring new events. You wait for the first smiles, the first sounds and words; you buy rattlers and carousels to give the baby stimuli that they can play with and observe. And sooner or later, you start thinking if everything’s fine with your child. You go for walks, talk with other mothers and fathers, compare your children and ask questions – and then you get the disturbing feeling that your baby is different.
Barbara remembers this time very well. ‘You begin to look for consultations, see doctors, do medical check-ups and spend days and nights searching the Internet for information. And then, the diagnosis comes: it’s the Asperger syndrome. My daughter Ola was 11 when her otherness was described in these two words, which have accompanied every day of our lives ever since. We began therapy immediately’. For Barbara, the diagnosis shed light on part of the mystery. She decided to solve the entire mystery in order to help her daughter prepare for adult life and teach her to be independent, make friends and pursue her passions.
Barbara shares seven tips with us that helped her in her everyday work with Ola:
1. Diagnose the ‘otherness’ and name it openly with your child.
I think that sharing the information about Ola’s ‘otherness’ was among the most important decisions I’ve made as a parent. I told her about it directly after I heard the diagnosis. I found a test on the Internet designed for an initial Asperger syndrome examination, and asked Ola to take it.
My heart raced when I was waiting for her response after the test showed that she could have the disorder. I was surprised when Ola… was relieved to hear it. Her otherness had been defined.
She now knew that she had problems not because she was worse, but due to something that has a name and that you can come to terms with, though not to a degree that would prevent from fighting for yourself in this complicated, yet beautiful world.
2. Follow your intuition. Don’t blame yourself or other people.
I sensed that something was wrong more or less from the moment Ola turned 2. All I could do is follow my intuition. And as it turned out, I intuitively assumed the role of a therapist. My daughter’s deficits became clear during preschool. Ola couldn’t play with other children due to the aggressive behaviour she had developed, and because she only paid attention to boys – girls didn’t interest her at all. Instead of ‘normal’ meals, she only ate buns, often not even with butter. Animals were her only toys. She could talk endlessly about all the different dog breeds.
I signed up for workshops for parents of children with challenging behaviour, where I found out that there were people who even bigger problems than I did. At that point, I decided that I wouldn’t blame me, or my husband, or my child for the fact that our family functioned differently. And that was my first therapeutic milestone.
Through trial and error, I was able to come up with methods that helped Ola function in her everyday life. I told her stories about preschool using her favourite animals. We did exercises to improve her motor coordination. I also explained to her that saying ‘hi’ or ‘good morning’ is important, because it makes life easier, and that trying to play with peers is much more fun that using violence. We signed contracts to achieve small and big successes.
Her problems got worse in primary school. I watched with terror as the days passed and Ola still had no friends. She would come home sad and wasn’t eager to go back to school. Her form teacher told me to relax and that things were going to get better, but he did nothing to make it so. That was when the idea came to my mind to write scripts and do some role-playing. To help Ola learn to make friends, I prepared descriptions of various situations that could take place at school and guides on how to use these situations to get to know people. We worked on simple things, like asking a peer to lend her a pencil: how to ask the question, how the person could respond, and, depending on their response, how to proceed with the conversation. There were days when Ola came home downhearted and told me with sadness in her voice that there wasn’t enough time that day, which meant she hadn’t pulled through again. But there were also days when Ola came back proud, because she had mustered the courage to ask her friend for the pencil, and they had lent it to her. She wasn’t able to carry out that conversation every time, but these small steps gave her strength.
4. Let your family help you.
It’s worth engaging your child’s siblings in your therapeutic actions.
Paradoxically, the simplest way is to take advantage of the fact that your other kids see the child with Asperger syndrome just as a sibling, rather than a member of the family who needs special care.
You can base a natural training of social skills on this fact, where your child has to look for a method to handle human interactions. This type of training is perfect for exercising your child’s sense of humour, teaching them to be aware of consequences of their actions, and solidifying social habits.
Ola has a sister, Alicja, who’s 11 years older, and who has always taken the effort to treat her like a ‘normal’ member of our family. Though Alicja did complain that she couldn’t dress her sister in pretty dresses and ribbons in the hair, because when Ola turned 2, she refused to wear a dress and protested very strongly against any hair ornament or even a hair band. On the other hand, Alicja made jokes with Ola and played with toy animals with her. She didn’t tolerate Ola pestering her. When me and my husband wanted to let something slide, she led her on to fight some more, often with good effect. Our older daughter has been living alone for a year now, but they go on girl outings together, such as shopping, and when Ola has a problem, she writes to Alicja.
5. Engage all interested parties.
Hardly any therapy would be effective if some interested parties are missing. People should always be aware of how important autotherapy is. No therapy is going to be successful if your child doesn’t feel like it doing it or put any effort into it. As a result, your child won’t learn to be responsible for their life and the fate of the family that they are going to start someday.
One of the most important parties in therapy is the school.
A cooperation between parents, therapists, teachers and school specialists is definitely more effective than when all these people work separately, without consulting one another.
Your child spends a significant amount of time at school, and that’s when both education and therapy should take place.
To achieve success, you need cooperation and understanding from the other students in class. This is what I was missing, which is why I decided to do a presentation about the Asperger syndrome for the parents. First at the primary school, then at the first parent-teacher conference at the lower secondary school. I told the parents what the disorder is about, what it entails, what problems accompany it and how to take advantage of its benefits. I showed them bios of famous people with Asperger syndrome, told them about Ola’s problems with making friends and communication, and asked them to ask their kids to support her. The parents were very interested in my presentations and showed sympathy. They talked with their kids at school, and since then, Ola has had support from her friends, is no longer excluded, takes part in classroom activities and comes home happier. She even came up with the idea herself to take a book called All Cats Have Asperger Syndrome. She used it to tell her friends what it’s like to function a bit differently in the world with a pinch of salt.
6. We can achieve more together.
Immediately after Ola was diagnosed with Asperger syndrome, she began social skill training, and me and my husband joined a support group for parents of children with this disorder. It wasn’t long before we realised that we could achieve more if we worked together. And that’s how the ‘I’m FOR’ Association for Persons with Autism and Their Families was born. The association has been active for four years now, and I feel honoured to be its president for the second term already. So in addition to my job, which requires a lot of engagement from me, I’m on another full-time contract – a social contract that is as demanding in terms of activity as the other one. And, of course, I’m first and foremost a parent. I try to help others, and draw from other parents’ experiences myself.
7. Discover your child’s passions and develop them together.
The other day, one of the mothers from the association took us on a trip to a horse ranch. And so, Ola has been in love with these animals for four years now. Horses are her passion, which she develops not only by riding and jumping through obstacles, but also by taking care of the horses.
She also has a gift for choosing horses that no-one else likes in every ranch. The ranch owners often tell me, without even knowing about Ola’s Asperger syndrome, that these horses… are autistic, and say that Ola ‘brings these animals back into the world’.
A parent’s therapy should primarily involve helping a child find and develop their passion. Every success will shape your child’s self-esteem, build a world of values and, most of all, given them a feeling of happiness. Each success is also an excellent way to make friends with peers, because there’s always something to tell them, something to start a conversation with or maybe even a way to go horse-riding together 🙂