My story

Our story

I want to share my story with you, a story about our journey toward healing and eventually moving beyond an autism spectrum diagnosis. It all took place abroad where we had been living and working for quite some time. In 2007 our first child was born. My son, Matthy J. was a beautiful baby, thriving in every way. Then came the vaccinations, just another part of childhood, something we all take for granted. After all, they’re meant to protect our children, right?

Firts shots and the complications

I went ahead and had Matýsek vaccinated without really looking into what it involved or what consequences it choice might have caused. After the second shot, Matthy developed complications: eczema that covered his little body from head to toe. His bottom was red and irritated. He was fussy, could not sleep, and kept spitting up. He ran a high fever for two straight weeks. We saw our pediatrician and then went to the ER. There I was told that everything was fine and that, most likely, his body was fighting a virus or some kind of infection. They said there was no cause for concern.

Every new shot seemed to make Matthew health worse

With each round of vaccinations his health seemed to get worse. At just four months old, he began to cry with a piercing, desperate wail that went on for hours, impossible to soothe. I now know this kind of cry is called an encephalitic cry. He would only fall asleep for a few minutes before starting again. We could not lay him on his back as he would scream and arched his body in pain. From that time on he hardly ever slept on his back. By the time he was a year old, he was getting repeated ear infections, up to eight times a year. He was anemic, constantly on antibiotics. Those, in turn, led to urinary problems and yeast infections. It felt like an endless cycle.

First shots and the complications

After the whooping cough vaccine, he actually caught whooping cough at age two. The doctors were saying the same, and they hinted that I was being hysterical. This went on until he was about three, when after another vaccination there was a major regression. Our little boy became a child who stopped talking and stopped noticing us. Over roughly eight months, he fell back in every area to the level of a 15–18-month-old. He stopped smiling, playing, and showing interest in us or anything at all.He began having spells of disorientation, seizures, and anxiety. Matthy J. stopped responding to his name. He spun in circles, ran around, could not be stopped and was constantly on the move. We could not touch him. He could not tolerate bright light or sharp noises or the general bustle around him. If the wind blew or a car went by he would immediately cover his ears and any harsh sounds would hurt him. He blocked eye contact with his hand. Other children could not get near him. He held his fingers in odd positions. He would run off a bit and then put his body and fingers into a strange pose. I kept thinking he might be having a cramp, that this could not be right, that it had to hurt. Then came severe constipation. His stool was light gray and reeked of sulfur or ammonia. He was extremely pale, almost gray, with dark circles under his eyes. He often stared into space. Later he would suddenly laugh or giggle at random, but not at appropriate moments. He moved and acted as if he were drunk. He sweated heavily, and his sweat had a strong odor.

Final diagnosis: regressive autism

Starting around nine months old, his breathing was strange and it stayed that way until he turned four. Even in his sleep he seemed to hold his breath. Later I learned that apneic pauses are a sign of brain damage. So we saw a neurologist, a developmental specialist, a psychologist and others. The first diagnosis was PDD-NOS (Pervasive Developmental Disorder -Not Otherwise Specified) since he was still so young. Later, at the Drexel Autism Center in Philadelphia he was diagnosed with autism with a GAFF score of 46. The final diagnosis for Matthew was regressive autism. As a result, by 42 months our child had fallen back developmentally to the level of a 15-month-old. Just before his third birthday, we had a four-hour evaluation through early-intervention services and the result stated his development was right on track. About nine months later, another evaluation showed clear regression to the level of a 15/18 month-old and the specialists were stunned.

Birth of our daughter Anička and her reaction to vaccination

In 2009 our second child was born, our daughter Anička. Matýsek was 33 months old then and the worst vaccine-related harm had not yet happened. Just as her older brother Anička was vaccinated and then had health issues, which were blamed on viruses and similar causes. As with Matthew, doctors firmly ruled out vaccine side effects. A major change came 14 days after her third dose at seven months. Anička suddenly stopped sitting on her own. Her arms and body went limp, like a rag doll. She stopped turning toward sounds. The babbling stopped. Our lively baby became a child who only lay there. I remember that at about four months she suddenly had severe tummy pain and constipation. A healthcare worker asked me how I knew she was in pain. Sometimes the emotions are hard to bear, and other people’s indifference is crushing.

Special therapy and early progress

What more could I add. When Anička was about twelve months old, we turned to early-intervention services for help. Specialist therapists began working intensively with her. At first, under their guidance, she showed no improvement or only the smallest signs of it. She was still too young for a firm medical diagnosis. Matthy had been diagnosed with autism, and we were told nothing could be done. We were advised to prepare for limits ahead: day programs and special schools. It felt like, “Here is the diagnosis. Here are your children. Go home. We are sorry.”

I cried over that moment and replayed it in my mind many times. Something in me kept resisting that verdict. I had given birth to and raised two healthy children. I could not accept that, with a wave of the hand, something or someone would take them from me without my doing everything possible to stop it. With Anička, because of her age, the conclusion could have been speculative. With Matthew, it was crystal clear. I wanted my children back.

Alternative medicine and a better tomorrow

I was at a crossroads. Either leave everything to conventional care and early intervention or add alternative approaches based on the Autism Research Institute DAN (Defeat Autism Now) and similar protocols. I was living in the U.S. then and paying for everything myself rent, the kids, food, special diets, specialists. No one discussed costs with me. The doctors’ answers did not satisfy me, so I sought out people who specialized in autism. I did it on the fly with the kids in tow. I sat at the computer and devoured everything I could find.

I read about major risks tied to vaccines, their ingredients and side effects that in my view most pediatricians do not even diagnose correctly. I connected with many parents and professionals who thought like I did and had children with similar issues. Some of the most knowledgeable people I met were the parents themselves. Their drive to help their own kids and their persistence turned them into true experts on autism from many angles.

Let me push back on a myth I keep hearing in the Czech Republic: that parents of children with ASD are too emotionally involved to become real professionals. Many are outstanding specialists in early intervention and special education and in research from biochemistry to metatherapy. Because I dug in, I gathered crucial information and went into the fight with a clear goal: to minimize what vaccination had caused and get my children back.

We met regularly with other ASD parents and traded information what to try with the kids, where to go, who to ask, how much it would cost. That knowledge was invaluable for me as a mother footing the bills, and for the children, who did not have to endure every trial and error step. I could choose what seemed best based on how their bodies responded.

We adopted the DAN protocol recommended by ARI in the U.S. The aim was to heal and restore function especially in the gut. We focused on intestinal dysbiosis, poor digestion, parasites, malnutrition, oxidative stress, PANDAS, and more. We supported detox pathways and supplemented amino acids and other things their bodies could not produce or absorb. We did all of this under the supervision of a physician and a specialist in the field.

A happy ending to our story

It is a long shot, but not impossible. You need patience. In my view autism is mostly in the gut. Another key step for us was detox. Kids’ bodies with autism can be in rough shape and that needs fixing. With the right support, their systems can heal. Alongside that we kept going to early-intervention services, speech therapy, and other specialists. I cannot put into words how grateful I am to everyone who helped care for my children. Without them, Anna and Matthy would have had little chance at a typical path. Early intervention matters. Treating both kids was hard financially and emotionally. Many times I was at rock bottom and wanted to quit.

I am glad I did not. Today I can say with pride that one day my children will live independently and raise families of their own. Sure, if you look closely and want to find it you might still see a hint of “autistic traits.” What matters to me is that they go to regular school and preschool. My savings account is empty, and my head is packed with info that probably will not help in everyday life. But I got my kids back. And it was absolutely worth it.

Matthy is a natural athlete. He has an IQ of 136, a brilliant mind for numbers, and he taught himself to read and write with almost no instruction. He loves building sets of every kind. He is exactly the kid he is meant to be. Anička has a little imp inside her who loves to dance and has a very gentle feel for people. She rides a bike and skates, and when mischief cannot find a way, Anna can.

One last thing. About six months ago, I was walking with Matthy. He said, “Mom, remember when I was not talking and you kept talking to me? I wanted so badly to answer you, but I couldn’t.” He was four then.