An interview with Dorata Mucha, mother of an autistic boy and creator of his fanpage “Tomek: Me an My Autism”.
When she heard her son’s diagnosis, she had a breakdown. Then, she decided to fight against autism. She forgot about family as well as herself. It was only thanks to her next pregnancy that she was able to approach her son’s disorder differently. Dorota Mucha, mother of 6-year-old autistic Tomek and author of the ‘Tomek: Me an My Autism’ fan page, talks about the life of her family, her son’s education and therapy, and her own path to the acceptance of autism.
When did you learn that your son had autism?
A month after his second birthday.
What were the early aspects of his behaviour that made you worried? What did you do then?
First of all, he had problems sleeping. I just couldn’t maintain any daily routine or rhythm for him. I had to carry him around in a wrapper all day. In the end, my husband played the kangaroo at night by having Tomek sleep on his belly. Before we went to sleep, we did various activities, like foot massage, body massage, relaxing baths, carrying Tomek around, and rocking him up and down. We tried having him sleep in his bed, in our bed, and in a carriage. Then there were problems with muscle tension. His legs wouldn’t rest, and his body was stiff. Before he went to sleep, I put his legs between mine. It was the only position he could relax in and sleep.
Tomek cried and shouted even though all his needs were met. You couldn’t draw his attention with anything. Hugging him didn’t work. Nothing worked. He could cry non-stop for two hours, and then he would suddenly stop on his own. He shouted in new situations, for instance, at the doctor’s or when we had guests. We reported the problem to a paediatrician, who actually saw all this with her own eyes, but she couldn’t help us.
Tomek also had problems with defecating. We massaged his feet and belly, gave him special tea and low-fat anti-colic milk, and finally tried giving him medicine – Duphalac and Lactulosum. Tomek had very high fevers. After vaccines and during infections, he reached 105 F. He was hyperactive and restless. He wasn’t interested in toys, he ran away from us, and was unaware of danger.
Who else noticed your son’s developmental problems?
No-one in particular, at first. Tomek’s grandmothers compared his crying to how their children used to cry, and said that none of them had cried so much. The paediatrician said that there was nothing to worry about, even though we told him about the problems and Tomek screamed during the whole visit and for half an hour before it and 15 minutes after it.
How did you react when you learned that your son has autism?
I went through many phases. At first, my legs buckled under me. I knew nothing about autism. I once watched a film about the MMR vaccine and some boy, but it seemed so distant to me. I thought that things like that didn’t happen to people every day.
I was afraid to ask the doctor more questions. I wanted to go back home as fast as possible and read something about autism myself, because I couldn’t believe that my son had it. I wanted to find proof that Tomek doesn’t have autism, after all.
I googled ‘autism’, and infographics showing the symptoms of autism came up. Unfortunately, most symptoms matched. I showed the infographics to my husband, but he waved them away and said that there was no point to make premature diagnoses, and that I was exaggerating. I, unfortunately, already felt that it was something serious. I was terrified, but still hopeful. The most depressing thing for me was hearing that autism was incurable, irreversible. That it was practically a life sentence. I went through depression and despair, then I started pulling myself together slowly and decided to deal with autism head on. I was 100% engaged. I forgot about the world, my daughter, my husband, and myself… Only my fight against autism existed. Pregnancy and my third child broke me out of this frenzy. I began looking at autism from a healthy distance. Tomek went to preschool, and I went back to the world. We’re still taking action, but we’re much more relaxed about it. We’re able to take it easy.
Where did you look for support? And did you find any?
At first, I looked for support among my friends, who had different opinions, then among my family, in religion, on the Internet, on forums, among doctors, teachers… I looked everywhere. At the time, I thought that no-one gave me support, because for me, ‘support’ meant showing me a single best way, therapy or medicine that would cure autism. I would have considered it support if someone had told me, ‘Don’t worry, he’ll get over it! You can live with it!’ But looking back, I think that everyone I asked helped me one way or the other.
What is the most important thing for the child (and the parent) after the diagnosis?
Keep on being a parent. Don’t wear the uniform of a strict therapist. Don’t go mad about all this. Don’t lose balance. Look after yourself first, because if you’re depressed, frustrated and weak, you’re not going to make much headway or help anyone. It’s a bit like being on a plane. You first put on the oxygen mask yourself, then help your child put it on. It’s time to begin therapy only after you’ve organised your life. Once you see the first results, you’ll know that the therapy is meaningful. With the first successes, even the smallest ones, hope will come. And hope is very important. There needs to be a spark of hope. Always.
What did you have the most difficulty with after the diagnosis?
My ignorance. The lack of a key to Tomek or to autism. The sheer number of different approaches to the matter. The heavy feeling of responsibility: even though I barely knew anything about autism, I had to make key decisions about the future of my child concerning what therapy we should choose and what path we should follow. The fact that there is no such thing as an autism doctor, someone who’d take care of everything on all levels, from A to Z. Rather, it’s a process: the neurologist, the psychiatrist, the psychologist, the speech therapist, the gastroenterologist, the dietitian, the physiotherapist, the pedagogue – they all have their shares of work.
Where did you look for information about education and therapy for your child?
We began with various massages and check-ups. Someone recommended homeopathy, other people recommended pressure therapy, dolphins or dogs. But I myself kept wondering how Tomek was supposed to start speaking. I found a list of centres that dealt with autism on the website of the Synapsis Foundation. The nearest centre was in Katowice. We went there and they gave us a comprehensive service. Tomek started talking about a year and a half of therapy.
What should you pay attention to when choosing the type of therapy for your child?
Whether the therapy sounds convincing to us. Whether we believe in it ourselves. I can’t bring myself to engage in something that I’m not completely convinced about.
What were the most important aspects for you after your child began therapy and education?
It was important for me that the therapy wasn’t just some hocus-pocus, and that Tomek would stay human in all this. When it comes to spiritual life, I myself believe in miracles. So I don’t need any rational explanations if something like that happens.
But I know that before a miracle can happen, you need a lot of effort and work. I like it when something is logical. When one thing leads to another. I like to understand what we’re doing and why.
That was the type of therapy I was looking for. I also paid attention to whether the therapy had already helped someone and to what degree. I wasn’t afraid of work, but I was afraid of making a bad choice and wasting precious time. This was very important in the case of speech. I wanted to have as much done as possible before my son was 3.
I could see that Tomek’s first therapy, which was pressure therapy, made him less hyperactive. But I didn’t really understand how massaging his feet or eliminating some infant reflexes was to supposed to draw out speech. I saw the first effects after the therapy that used the Krakow method. Tomek started to keep eye contact again, he understood more of what he was told and showed less frustration, and finally, he started speaking on his own.
What was the breakthrough moment in your child’s therapy (whether a breakthrough for you or for your child)?
The moment when Tomek started to speak.
What advice would you give to parents who have noticed some anomalies in their child’s development?
I’d tell them what I usually write on my blog: that you should contact a doctor (a paediatrician, a neurologist or a psychologist) immediately. If you get ignored, go to another doctor, unless the first one resolves your doubts in a meaningful way. I, however, believe in parents’ intuition: if something makes you worried, then you’re probably right. Time usually counts, especially in the case of autism spectrum disorders.
What can be done to give a child with autism the same chances for development as a healthy child?
I don’t know. It’s very difficult to do. We’re experimenting ourselves. We have three kids. Tomek is the second oldest. We take care to give him similar challenges and duties, as well as give him some enjoyment. He goes to a preschool with inclusive classes. I didn’t want him to be surrounded only by children with disorders, like at the medical centre he went to earlier.
What made you decide to make a Facebook page?
There’s no grand ideology behind it. It’s about the community.
Parents whose children have such disorders as autism have little time to spare and are definitely less flexible when it comes to meeting with their friends. The website allows us to talk with one another easily, exchange advice, and so on.
When I go to the playground by my apartment block with my youngest son, he plays in the sandpit while I go talk with the other mums. With Tomek, that’s out of the question, because I need to pay 100% of my attention to him. Besides, he doesn’t know how to play alone, so we play together, and I can still see that he’d like to run away. Many people ask me about things, so I’m happy that I can help someone. I only draw from our own experiences. It’s all I can say about autism, but for some people, that’s already a lot. We have collected quite a lot of experiences already.
What does running a Facebook page give you?
Sometimes, it lets me get away from my worries. Other times, it just makes me happy that someone’s day was brightened when they read an entry about Tomek’s adventures. Tomek is a cheerful boy. I also wanted to support other mums who have children with disabilities. We need one another. These are exceptional mums – Mums with a capital M, in fact.
What are your greatest fears and anxieties?
I think that they are the same as other parents’. Our illnesses and our children’s illnesses, whether Tomek will be independent, whether aggression or behaviours that we won’t be able to tackle are going to appear. I also worry about the future of my two other children.