Grandparents story | Parents story
Grandparents story | Parents story
| Filip
Dear grandmas and grandpas, I would like to share my memories with you, tell you how I became a grandmother and how long it took to find the cause of my grandson’s retarded pace of development, to explain why he does not speak. When he was born, my grandson was very little and had lovely blue eyes. There were some problems with anoxia (already during the delivery), but doctors assured the parents that everything was all right. My son took my daughter in law and my grandson back home. I underlined ‘my grandson’, because I was extremely proud and happy of becoming a grandmother. Filip won my heart immediately. Showing my happiness and pride I had to be very carefull, however, so as not to hurt my children’s feelings. I was afraid they could tell me not to interefere with their baby’s affairs. But they proved really tolerant and have taken all my ideas with much understanding. I, on the other hand, keep in mind that it is the parents, who take all the decisions. The only person who had misgivigs about Filip’s development at the time
was the midwife. She encouraged us to make certain that he did not suffer
from cerebral palsy.
I remember clearly how scared I was. If it should prove Filip had this disease, how would his parents take it? Would they manage to fulfill all the potential duties? Would they put up with the pronouncement? It was on the way to Wroclaw, that I first realised I must not give up. If the worst-case scenario was to come true I would be the one to help and support my children and grandson, to show them which way to go. Not only to make it easier for the parents, but most of all for the sake of the little one, totally dependent on us. The quicker the parents overcome the shock, the quicker they will start the fight for the child’s better development. To our great relief, it turned out that from the neurogical point of view Filip was a healthy child. The doctor remarked that the family acted as if wanting to make a sick child out of a healthy one. We came back home happy as never before. All our fears and anxiety disapperared.
But with time I grew more and more apprehensive again. Why has Filip not started spaking yet? Why does he develop slower than other children? I tried to explain myself that boys start speaking later, that once he starts he will make up for the lost time. I also did not talk with Filip’s parents about my misgivings. After all, the doctors said everything was fine.. Filip was getting older, but he still had problems with speaking. I knew he felt the need of contact with the surrounding world and that he was trying very hard to express what he had in his little head. His emotions and frustrations gradually accumulated. At times he got very angry and his eyes showed great saddness and regret. He hit and bit us and himself. I realised how much he suffered not being able to communicate with us. In his desperation he managed to teach us his own code. He kept repeating
his signs until we finally understood what he was trying to express. The
more we were able to understand, the calmer he got.
After a magnetic resonance of the brain we found out about the underdevelopment of left temporal and frontal lobe, those responsible for speaking. Filip received 10 series-10 injections each to match the healthy neurons
in brain, which was supposed to make his brain work better. The treatment,
however, did not bring the expected effect. The boy underwent more examinations
by different specialists, he started visiting a psychologist.
The genetic opinion was short and left us with nothing to hope for.
Our whole world broke into pieces. My children came back home devastated. What is this symptome? What kind of handicap?After all, Filip developped almost normally, the only real problem was with speaking. When I looked at my children and my beloved grandson I got more and more angry. How can anyone show so little respect and understanding for other people’s feelings to pass such a tragic information without even trying to prepare them for it? I felt strong greviance against the whole world, against the doctors for not having noticed the signs typical for Cri-Du-Chat syndrome, against the world of science for having so little knowledge about it. The worst of all was that once doctors, psychologists and rehabiltants
found that the child had a genetic disorder, they claimed they could not
do anything.
Now I know that neither the geneticist nor the doctor could say how to deal with Filip or other children with the syndrome. I also know that the world of science acquires information about rare disorders from the families, by observing children’s development, that the change in genetic code is irreversible, that it is not a disease. I know that every child with Cri-Du-Chat syndrome has to be observed individually. We should concentrate on developping those skills that children point themselves, with which they have the greatest problems Their pace of development cannot be compared to that of so-called ‘healthy’ children. At the time, however, I felt growing anger. It was the anger that saved me from a nervous breakdown. I knew I had to be very strong now. Although I was terrified and did not know what to do, I could not afford to show the fear to my children, since they desperately needed support and hope. It was a really hard time for me.
I managed to get a few pieces of information on Cri-Du-Chat syndrome. I was very happy that we found out at least what the mysteriously sounding syndrome was. We started searching for more and more information, for addresses of other families having the same problem. When we met professor Alina T. Midro we saw a light in the tunnel. She
was the first to show us understanding, patience, interest in the progress
Filip made. She also gave us some scientific descriptions of the syndrome.
We were extremely lucky to have found such a wonderful person.
One of these methods is called “Montessori”.
Show how to do things and help only when the child asks for it. Praise whenever he or she does something well or at least tries to, as praise and approval are very important in motivating children and help them develop. My grandson made me understand it. He is very eager to help with everything, always does his best and waits for being praised. It is really discouraging for him when he does not feel our approval. I came to an idea that it would be very useful for Filip to learn finger language (he is not able to speak but can hear and understand other people). He would thus be able to communicate with a larger group of people and identify with it. He could express his needs, feelings, share his experiences and fears not only with the family. All that would enable him to find a place among the dumb and as a result he would not be so lonely anymore. We started the lessons of finger language. Filip had no difficulties learning the signs. He made progress quite quickly and used the signs he mastered while communicating with us. After a year, however, we realised that his speaking abilities did not improve at all. Therefore, we decided not to continue finger language lessons, but to icrease the number if meetings with a logopaedist instead. It proved to be a good decision. Filip started speaking more and he still uses finger language when he does not succeed in expressing himself in words. In his case combining the two languages gives really good results. We speak, Filip speaks and shows the signs. Yesterday ( 28 May 2002 ) it was Filip’s 8th birthday. He is the most important person in my life. All the time he develops at his own pace, he acqiures new knowledge and skills. I am proud being his grandmother. Every day Filip teaches me, shows me the world seen with his eyes. This world is full of love, tenderness and warmth, there is space for everybody and everybody has the right to happiness. We have come a long way and there is still much before us. Today, from the perspective of all these years passed, I look in the future with much more optimism. The Cri-Du-Chat ‘monster’ proved possible to control. I wrote this text for all grandmothers and grandfathers who have similar
worries.
Write to the e-mail address : stowarzyszenie_gen@poczta.onet.pl
Hanna Maciejewska
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