A letter to parents

FOR EXAMPLE:

If only legs are affected and the child sees well, talks, has socially and emotionally acceptable reactions and is cognitively preserved – that would be the FIRST level of impairment.
If the child has increased muscle tone in the arms and legs, failed to roll over from back to tummy independently (which is the FIRST motor skill, for example) and also has impaired vision, cannot speak… These children belong to the FIFTH level of impairment.
Vuk also belongs to this group. Honestly, for a long time I did not accept that Vuk has any level of impairment. After I had finally come to terms with the diagnosis of cerebral palsy, I didn’t believe that he would have a lower degree than the first one … and to be even more honest, I believed that he would play football for none other than…. Manchester United!
It was unbelievable to me that, with so many hours of exercise per day, (on average 10 hours!) little Vuk would not only be unable to walk, but also, of course, run or play football like his dad.

I feel the need to tell you a personal example, as I believe you can benefit from it:
When Vuk was one or two years old, we took him to “therapy” with a certain “healer”, if I may call him that, a “miracle worker” as many parents called him.
When he saw the Vuk, he said: “This time next year, he will be walking!’
And of course, when someone makes such a promise to you, what would you do at that moment?
We made the same decision as anyone would have … Without complaining, we travelled more than 300 km every month for the next year to go to treatments. And although there was no fee for treating the children, you had to wait…
We waited for several hours for a five to ten minute treatment…

In all that agony, we were waiting … for five days the parents were all together in the same place and, of course, we supported each other in some way, we saw “improvements”. Unfortunately, I NOW know there weren’t any.

But how did these “miracle stories” come about?

As it happened, a little girl from Novi Sad could not walk at the age of one and a half and was slightly behind in motor development. Physiatrists call this type of developmental deviation “neurorisk development”. So, it’s not cerebral palsy, but the child may have suffered for a few seconds during a more difficult birth, maybe there was some mini-bleeding that quickly subsided, and the child is sitting, crawling, hasn’t really talked yet and is not walking. Naturally, especially if it’s a first-born baby, parents are worried. And that’s completely normal! We are worried about completely benign things like when our child has a virus or a high temperature, let alone something more serious. And we leave nothing to chance!

They started treatment with the above-mentioned ‘miracle worker’. The therapist who was working with both Vuk and the little girl at that time said that she would walk in a month or two for sure and that she just needed a nudge. And she did start walking, soon also talking and, of course, the results weren’t attributed to the normal course of events, or the therapist, but…. you guessed it right….to you know whom.

And okay. I don’t want to dispute anyone’s merit, because often the success is a combination of all the people who put a lot of effort into different treatments. We all take our little ones to several places in just one month so that we don’t accidentally miss out on something “because we don’t have much time to waste”. But what happens next?
The little one walked, but the person I’m writing about told her parents: “Bring her to me every month “so that I could check up on her” and maintain her condition!”

It so happened that we were waiting for treatment and that little girl was also there, walking around. An old man said: ‘This child is just fine. There’s nothing wrong with her!’

An old woman in the waiting room replied: ‘You should have seen what she used to look like! If it hadn’t been for… (I don’t want to name the person because of my personal attitude) …, she would never have been healed!
Of course, a lot of parents who witnessed this episode followed and absorbed every word and then started telling the story of the “miracle” to others, with sincere hope that “the same miracle” would happen to them soon.
Then I stopped… my world stopped for a moment… I was holding Vuk in my hands, I looked at him, then I looked at the little girl running around, then I glanced at him again. ‘How is it possible? What about Vuk? He can’t even hold his head and we’ve been coming here for a year, and I know what the little girl used to look like a couple months ago.’
Then it dawned on me! I realised everything that I wrote about before! You cannot compare Vuk and that little girl!

They are beyond comparison! They’re not from the same story!
We cannot compare children who only show signs of neurorisk or first degree brain damage with children who are third, fourth, fifth!!!
We’ve had wonderful examples of toddlers walking at our centre, but I didn’t want to post them on public networks for this very reason. I don’t want people to think we’re miracle workers!
I want us to be presented in the light of modern therapy, keeping pace with the world in Cerebral Palsy treatment . OUR GOAL is to improve the quality of life for children and, therefore, for parents. And that is really the most important issue. We offer several treatments in one place, so you don’t have to go to the other side of Europe only to try just one of them.
Also, if you learn to feed your child in 15 minutes per meal instead of an hour, five times a day, you have made your day and life much easier. I speak from personal experience because I used to feed Vuk for more than an hour four times a day… if he cried, I cried with him… these are the moments that drive us to despair… Today Vuk eats his meal in 15 minutes. For me it is a huge success and a great relief.

• Medek Cuevas Method – based on the stimulation of balance. After three weeks of treatment using this method, we notice changes in the quality of the children’s posture, especially in children who are hypotonic. In children with a spastic (hypertonic) form of cerebral palsy, we noticed that the tone increases just for a brief moment, even though the child has better hand support and better balance reactions. But that’s why it’s wonderful if you can combine this method with:
• The Feldenkrais method and JKA approach, which I often like to describe as those that teach us to divide complex movements into small puzzle-like pieces that are easier for both children and their brains to grasp. The Medek method teaches us to perform the movements suddenly at a certain angle in order to target a postural reaction. Feldenkrais and JKA teach us to divide those movements into mini-trajectories so as to make it easier for the child to transition from a lying position to a side sitting position, for example,.
• Integration of primitive reflexes – by Dr. Svetlana Masgutova – After several years of research and daily observations of my son Vuk, numerous thoughts and questions ran through my head, but the most important one was: “How can I influence the Moro reflex that throws him out of the sitting position so easily when he is scared?!”
  I also asked doctors and therapists these questions while they were working with Vuk, but I didn’t get any answers.
  I finally got my answers by reading materials and attending seminars abroad, mainly thanks to the dedicated and extensive work of Dr. Svetlana Masgutova.
  These answers were not easy to find. I travelled hundreds and hundreds of kilometers in search of them. I got the first answer, but not all of them in the Czech Republic at the TheraSuit seminar. Because of the TheraSuit method and the advanced course, but also due to my interest in primitive reflexes, I travelled to America. I met Julietta Wenzel there who presented her own work, as well as the work with the QRI laser developed by Bonnie Brandes. Because of her, I went to Switzerland to be trained to use this type of QRI treatment. I also read books by Sally Godhard, which was the reason for us to go to Budapest to see the therapist who uses her method. Finally, she told us about Svetlana Masgutova. I attended her first seminars in Slovenia and then the Netherlands. I came across this method in 2013 for the first time through “Archetype Movements” and then by attending one of the most important seminars: “Integration of Postural and Dynamic Primitive Reflexes” For seven years now we have gained invaluable hands-on experience in treating primitive reflexes at our centre, in addition to attending numerous MNRI® seminars. I am certain that it is only thanks to us and our research that these seminars are nowadays held in Serbia.
• Integrating primitive reflexes according to Bloomberg and Bonnie Brandes – it gives us a bigger picture and a more complete approach to integrating primitive reflexes.
• TheraSuit method – a method that originated in the USA and is based on strengthening the muscles that are undeniably weak in our children. I stayed at their centre for two weeks.
• The PNF and DNS method are two extremely powerful methods, especially for children who actively participate in movement.
• Myofascial Release and KMT – thanks to which we influence the reduction of contractures.
• Neurofeedback according to Othmer – The Othmers have developed some of the best quality software and protocols in order to stimulate an adequate frequency of the brain.
• Pablo and Tymo through Tyrotherapy®, which makes it easier for the little ones to participate cognitively by playing games.
• Galileo programme – helps strengthen muscles and reduce muscle tone during treatment.