Early Intervention from a Parent’s Perspective

Let me introduce my family, my children, and along with this you will see how I came into contact with early intervention. I have six children. Three of them are officially receiving early intervention, but as a matter of fact, all of them have received early intervention –some needed more, some needed less - and some are still receiving it.

I think it can be instructive also to specialists working in practice, why each of my kids received early intervention, what they needed, how and where they got treated, and who and how were involved in the process.

My eldest son is almost as old as the early intervention in Hungary – 20 years old now. After finishing a 5-year long secondary school, he is now learning for the oral final exams, graduating in two subjects on a higher level, preparing for studying at a university of technology. His dream was always to become a pilot.
|His dream cannot be fulfilled due to his speech disorder:- stammering. Sometimes just a little bit, sometimes it is hard to understand him. Stammering started right at the beginning of learning how to speak.: The first time I heard it I thought, ‘Don’t worry, he will grow out of it.’

That is what the paediatrician, the district nurse, the day nursery teacher and the grandparents told me. I also stammered as a child but did not grow out of it but have a serious speech therapy background. That is why I tried to find some kind of therapy as early as it was possible but after I had read through the literature of stammering, I reconciled myself with waiting until his age of three. Then, as the recommendation of the paediatrician, a psycho-pedagogue started to work with him… with very poor result. After a year, I took my son to a famous specialist, an author of a book in the subject.

As per his recommendation we joined the stammer group of Bárczi Gusztáv Special Education College in Damjanich Street. As far as I was concerned, speech therapy is not part of early intervention. However, it can be interesting because, in this case, I noticed a slight difference compared to the normal speech development. So with this treatment, I thought, we could do something against the problem. The speech therapy we found was incredibly efficient and productive. We joined the group of Mácsainé Hajós Katalin. The lessons took once a week, for two years. She didn’t only improve my son’s speech disorder but also opened his personality with endless love and patience.

While the children were playing, the parents were talking about the problems that emerged in a parents’ group with the help of a psychologist. The perspective was absolutely family central. My son had no symptoms after a year. The feeling of paradise came to the end with starting a badly chosen school and a teacher. Several therapies we tried afterwards are not part of the topic of the conference.

Meanwhile, my first daughter was born in 1997. She was around five months old when I noticed her physical development slowed down. My friend’s twins, who are the same age as my daughter, were playing happily while my daughter did not want to move but was lying calmly. I started to worry seriously when she was around six months old. The district nurse did not really want to visit my family, she only called me on the phone. As a reaction of my worries she just told me: ’Don’t worry, children grow and develop in different ways, she will catch up.’ The paediatrician’s diagnose is worth telling: ’No worries, the child is just a meditative one.’ The orthopaedist said, she was all right and would be a nice ballerina. He drew the conclusion because he could move her easily, for example her legs to her ears. Although it sounded like a nice plan for the future, it did not comfort me when at eight months old she was still ‘meditatively preparing for a future ballet-dancer’.

I took her to baby-swimming, hoping she would feel like moving in three dimensions. She did not, so I took her to an ambulant conductive consultation for my friend’s advice. The specialist felt a few physical exercises would solve the problem. So we started to make the exercises from that time on and later, when I made my daughter sit, she could sit by her own. However, she was still unable to move without any help. She was already nine months old that time. I was really unsure.

Apart from me, no one was actually interested in the physical delay of my sweet, smiling and well-balanced daughter. ’Do I really worry too much?’ Another month passed, without any change. I could not accept this big difference as normal while other babies at the same age were already learning how to walk, yet my little daughter could not even move. I just could not ignore the facts but had no idea where to go, what to do, whom to talk to. I had no help or guideline from the health service at all. At last, I found someone who happened to be a paediatrician at a PIC department. I took my ten month old, peacefully sitting, daughter to him. He was the first one to agree with me about the big delay in needing help. With a little uncertainty in his voice, he mentioned the name of Anna Dévény – Who invented and totally new method in physiotherapy called ‘Dévény Special Manual Technique and Gymnastic Method (DSGM). Aunt Panni worked at the famous Dévény therapy centre and looked at my daughter and said: ’God, how hypotonic this child is!’ I was terrified and thought: ’What’s that?’ Does she have high blood pressure? Or low?’ So this is how we started taking part in DSGM.

Since the age of 1, she has had early intervention at an integrated day nursery. It consisted of cognitive development and physiotherapy but we kept on with the DSGM therapy as well. She took her first steps when she was 16 months old. As a recommendation of a DSGM-therapist, neurological tests were taken but we did not learn about the causes of the problem.
She is 16 years old now. She did not become a ballerina but danced in a group for seven years. The orthopaedist was sort of right, at last. As I have mentioned, finding solutions to my first two children’s problems was unbelievably hard. I have found it important to share my experiences with you because I think the majority of the parents, having similar issues, are uncertain and have no idea where to go, or whether to go somewhere at all. From this point of view, my story looks like a typical one.

There are several opportunities to receive early intervention in Hungary nowadays. We have got to be the home of many therapies in the past 20 years that are now well-known abroad as well. Our country now has worldwide acknowledged specialist too. Although many changes related to the field of children with special care and needs, have been made, parents concerned these issues will not get information easily or they only get one-sided, incomplete information about their possibilities. I have experienced that today’s practise is still the same and has not changed much over the past 20 years. Parents still give information to each other trying to trust– sometimes unreliable – sources and advice of the Internet. On the other hand, I also need to say that the number of websites providing useful and reliable information in the subject has increased. On the contrary, there is no protocol after premature birth and intensive supply at hospitals. It means that it is all about luck whether these problems are diagnosed, and whether parents know about the treatments or they can hear about a subjective opinion. Parents are mostly alone with their problems and their children with health issues.

During the last 15 years a lot of things have changed around me, in my family, also I have changed a lot. Without any pompousness, today I can bravely call myself a determined and competent parent who is able to make an objective opinion of her own child, who is able to recognize and accept that her child needs help and is able to find and use the necessary help. However, the road until this was not easy, full of sorrow and difficulties.

I trusted in the process going smoother after the third child… I was mistaken. After a pregnancy without any problems, my little son came into the world by C-section. Máté was two days old when the paediatrician of the hospital announced – so all in the room could hear – that because of the suspicion of infection in my womb I needed to prepare for my child to be unable to see, hear, speak and move. ’Do you have any questions?’ he asked without any emotions in his voice. I did not. I think I was shocked.

Though the following thoughts are connected to early intervention indirectly, I would like to make a stop here for a second. In my opinion, the empathy, helpfulness and the responsibility of the doctors and specialists towards a special situation and tasks needed to carry out are essential. It’s all about knowing the power of the words since it can determine the parent’s attitude towards their children, the acceptance of the children, the intervention and the specialists as well.

I know it can be a big and hard task for the specialist too but I am pretty sure that without an honest conversation included professional opinion, sensitive care, humanity and enough time, doctors can make incurable mistakes that influence whole families’ lives. It would be very important to awake the specialists to the consciousness of this. I have experienced that a sympathetic doctor or specialist, who does not pity us, can help parents through many problems.
Because in Máté’s case there were certain physical signs of his different development, we knew after the first examinations that he would need intervention. Having some information from my room-mates at the hospital, I made an appointment at the Early Intervention Centre in Budapest immediately. It’s never easy to call an institute like this. In my opinion, I cannot imagine no bigger heartache than looking at your child and knowing what difficulties he faces in the future. The first examination at the Intervention Center was very determined. It was not just about the process of the intervention but – and most importantly – about the relationship with my son. Máté was two months old then and we had had enough hospital experience by then.

At the beginning of the examination something happened that could seem to be only a little momentum for anyone else. One of the specialists asked: ’May I pick up Máté?’ ’Of course’ I replied immediately with a smile on my face. It’s hard to define what I felt at this time. No-one had asked me anything like this before. Máté was just another case involving more necessary examinations and for me, as a responsible mother, to let them to do these.

The specialist’s actions shocked me, it was the first time a specialist had taken us into account and saw a baby – the human in Máté. In that strange moment I could not remember who he was. I still don’t know but am still grateful to him. He gave our dignity back. I could be Máté’s mother consciously from that time. We were very lucky since we got into the centre by chance. I knew someone who knew someone and that person recommended it to us. The district nurse came to see us as a ‘one off’ compulsory visit then she disappeared. She never called us again and I never got any help from her. The paediatrician tried to encourage me nicely and talked about other serious cases that had positive endings during his practice. On the other hand, he admitted that he didn’t know the intervention possibilities or different methods, so I couldn’t get any professional help from him.

It wasn’t hard to recognize that our situation was bad, and that the specialists couldn’t give us any assurances regarding the future. We knew that we had nothing to lose, we had to try everything for Máté. We took it upon ourselves to do intensive research hoping to find information relating to Mate’s condition including tried and untried therapies, treatments, different medicines and physicians that promise ‘miracles’. We tried to make objective decisions by talking to doctors we considered to be reliable but, of course, everyone had their favourite theories and the ones they would not recommend. The responsibility of making the right decision remained ours. It was very depressing. How could we decide? A parent facing a situation like this is just a layman, yet has to be able to choose the right and proper method, treatment, medicine and operation carefully. Whether their decision is right, they will probably never know. The advice, explanation, confirmation and support of doctors and specialists would be great help.

Máté’s early intervention continued in an integrated day nursery at his age of three, still completed with DGSM, hydrotherapy, horse therapy and also speech improvement in Bliss Foundation. Máté has multiple disabilities. As ie didn’t find any kindergarten that would have been proper for him, we went back to the special group Tree of the Early Intervention Center at his age of five. It was the Heaven itself for Máté. I was sad and happy at the same time when my little son started to cry in the afternoon because he didn’t want to go back home. After outgrowing the centre, he became the student of Csillagház. He still learns there.

Domi was born in 2004. Finally, he was like a ‘normal’ child, growing without any special treatment. We learnt about his kinetic skills quite early but his exaggerated mobility and unmanageable behaviour caused a lot of trouble for the kindergarten teachers. Their suspicion about Domi having ADHD, with other words being hyperactive, was not proved, yet he could make people crazy around him. These times, I always recall the words of the famous child psychologist, dr Ranschburg Jenő who said in one of his lectures: ‘From the aspect of a lazy lion laying under the trees every cheetah looks hyperactive.’ However, a little therapy didn’t do any bad for Máté. We have made up our own category since then: hypermobile superactive. Anyway, it seems that Máté’s problem is controllable with the help of sports.

In spring of 2011, I gave birth to twins, Luca and Simon. Simi was three and a half months old when I got the first medical diagnose of him. I knew there was something wrong with him right at the beginning. He was different. I felt it. Everyone around me, of course, told me I was wrong. They tried to comfort me: ‘He’s a twin, the younger one, still a bit weak but will catch up. Anyway, he’s a boy and they’re lazier than girls and you are just over-reacting because of Máté. Well, my friend described him the best: ‘the world is too much for him’.

I felt him a bit tight, so we started to take part in DSGM. It was as if we had come home. The therapist found the twin, Luca a bit hypotonic, that’s why she also received treatment for a while. When Simi’s weight development stopped and started to lose weight, I took him to a gastroenterologist immediately. He found everything fine. It didn’t comfort me at all. I went from doctor to doctor by my own because the paediatrician didn’t find anything to worry about. However, I was absolutely sure that my little son was not growing as his twin sister did.

Then a routine blood and urine test finally revealed the cause of the problem: diabetes type 1. We were actually relieved. We were very happy to know about Simi’s sickness after that many unsuccessful medical visits. What’s more, it was something you could live with. We thought it would make the weekdays a bit more complicated but Simi could live a complete life.

We believed that the insulin pump would make the last three months only a bad dream but we had to be disappointed. His blood sugar results were very unstable and could not be fixed. The doctor said it was all right but I was even more dissatisfied and helpless. In autumn we decided to change doctors. The new doctor, dr. Luczay Andrea ordered a genetic test right away because she suspected Simi having a very rare genetic disorder called DEND syndrome. It comes with slow development, epilepsy and infant diabetes. Simi was seven months old then.

We had been going to the Early Intervention Center on a weekly basis for 2 months then. For me it was natural to turn to them when I had any problems with my children. We went there like going home and they also treated us like family members. It was a great feeling and I knew that we were at the right place. However, Simi’s development didn’t start as I expected and imagined. He was still strange.

Finally, we ended up at the neurology in November. The EEG showed serious operational disorder but no epilepsy. Despite this, the epilepsy treatment started and we got the prognosis for the future: he will live his life as a little plant. He really became worse and worse. He behaved very strange, screamed, slammed then became very lethargic. The nights were frightening and sleepless. There were even more signs to tell us that we were going to the wrong direction. The neurologist didn’t want to change anything, he still wanted to continue the epilepsy treatment and I was absolutely lost. I didn’t understand because Simi was still not stated as having epilepsy based on his regular health checks. In spring, we decided to change doctors again. He was almost a year old then. The new neurologist, Dr Altmann Anna gradually stopped the anti-epileptic medicines. Simi became better and better, his development started slowly, his EEG became clear and finally totally negative. Meanwhile, before Christmas, the result of the genetic test arrived: Simi’s DEND syndrome was proved. Currently he’s the only patient diagnosed with DEND syndrome in Hungary.

With the control of the endocrinologist we began the proper medical treatment and also early intervention continued. It currently includes physiotherapy, mental development, DSGM treatment and a special kinesitherapy on a daily basis. In the meantime, our little plant grew into a runner plant and there’s hope to have a ramble rose soon. He can sit, kneel, stand on all fours, climb and he can manipulate very well and also knows how the lisping snake hisses.

Finally, I would like to say some words about our current district nurse, Kis Zsuzsa, who stands beside us, not like the ones before. She helps with anything, supports and encourages us and she usually keeps the hope in me. I am very grateful to her.

And now I would like to thank you for your attention. I hope you can draw some conclusion and moral lessons from our stories. I hope early intervention will be better and easier accessible for all the families concerned. I hope that information stream will be more effective and natural in the future. It would be very important for paediatricians, specialists, doctors, district nurses to have leaflets or any publication that help providing information and making decisions for parents. I do believe in having a well-operating area between heath care and special education soon.

TÁMOP 6.1.4 presentation of ’New ways of childcare’ professional opening program included in Early childhood (0-7 years) program, on 28th May, 2013 in Budapest by the cooperation of the Institute of Pharmaceutical and Medical Quality and Organizational Development and the Office of Health Authorisation and Administrative Procedures.

Kovács Andrea